After a brief break I am back to share my stories, worries, concerns, joys, and all that falls in between. I believe there is joy in all we go through. It is simply the intricacy of any situation that gives us the window to the beauty. I have been through a few twists and turns since we last met.
For several months, back into late 2014, I have been having these strange, painful, sudden then lingering cramps. Cramps are the only way I can describe them for lack of a better term. In mid March one of these sudden pains came on and dropped me to my knees. A pain that became suddenly debilitating, even to the point that I could not take a breath or call for help. After staying frozen long enough for the pain to settle down a bit, I called my doctor. The only way I can describe it is imagine you have eaten a super sized meal from McDonald's then took off at a full on sprint. A side cramp to knock a giant out would hit you like a brick. Now multiply that and imagine it remaining constant, but with sudden jolts sporadically. I went back and forth for a week or two with my doctor until he heard enough. He told me to get down to the hospital for admittance. Thankfully my brother and sister-in-law dropped everything to help with our son. My husband's family was ironically on their way to visit. It became a tag team situation until most of his family left, leaving behind my mother-in-law with us as long as we needed her. That was a true blessing.
Once admitted I was put on a clear liquid diet. This would be a major downer for anyone. One of the worst downers for me. I have been well over anything lemon/lime or jiggly for years now. Being a diabetic made it more challenging, as my doctor had noted it in my diet (explanation to follow). The next morning they quickly did an EGD/ endoscopy. I was still ordered to stay on the clear liquid diet thereafter. I tend to vomit often after tests or severe pain and this scope proved no different. The rest of the day was not worth ingesting a thing. IVs are certainly a life saver.
Over the next few days I was run through a battery of tests. So when I woke on that second day I read my diet allowance through and through, time and time again. Italian ice. Ok, that sounds pretty safe. I love the frozen lemonade or cherry ice you can buy almost anywhere during summer months. I called down and ordered a cherry Italian ice. I was quickly swept away for a quick scan. Upon my arrival I saw this melted red substance, somewhat jelly-like, with a strange white cream (if that's what I want to call it) which was obviously not clear yet allowed on this diet. It was not something I thought I'd like no matter what diet I needed. I decided to call down for some ginger ale considering the vomiting was only tapering off. "You are not allowed ginger ale."
"But it shows it IS allowed on the clear liquids options..."
"Well, you are diabetic and have already hit your carb limit until lunch."
Carb limit?! What exactly is my limit? I had no idea. The person on the other end and I played our little game for another few minutes. Me explaining I am Type I and have an insulin pump as well as being on the clear liquids reiterating my limited options. Him explaining I did have the option of a broth, which is also something I despise, or wait 4 hours before ordering. At this point I ended the conversation defeated. Then a light bulb. I asked my husband to run to a gas station and buy me some darn ginger ale for goodness sake. The nurse happened to be in my room at the time and said she would sneak down to the cafeteria and grab something she thought I could stomach. Within minutes I had some lemon/lime soda (oh yuck) with a small cup of orange sherbet. I asked for a cup. I decided to put the sherbet in the cup and pour the soda over it. Instant party punch. My husband then comes in with a six pack of ginger ale with a surprised look on his face because there I was with the lemon/lime soda he saw. When I explained, he was delighted at my starving, innovative ways to find a happy place. I was in such excitement when I got bumped up to a full liquid diet the next day, especially since we now knew how to work around the ridiculous carb limit.
We knew how to work our way through a lot of this due to previous hospital stays with similar restrictions. I slowly worked my way up to smoothies. With a little more substance in me I was overjoyed by getting the chance to roam the hospital when I got restless....every few minutes in my case. The pain had lessened up enough, though I was doped up pretty well by this time. I certainly could tell when my re-up was necessary. Throughout it all my doctor came by once or twice a day to check my progress or decline as well as give any updates to my family and me. Much of the stay blends together as you may imagine.
Two or three days in he came in with some information that set the stage. The endoscopy showed irritation around the leads of my gastric stimulator. There is a clear print out of risks with this stimulator, as with any other medical need, where it lays out the possibility of migration of leads, perforation of the stomach, and rejection. At that point in time, all they could definitively say was there was irritation and inflammation. He needed to communicate with Medtronic, the manufacturer, and was going to try to touch base with a national expert he knew well. The manufacturer asked for my records while communication with the colleague was difficult. Days passed with little to no new information or plan of action. It was discussed that the leads and/or device needed to be replaced. My doctor was tossing the idea around about different casing around the leads and different materials to hold them in place hoping to prevent the irritation. By that time he had determined it was rejection of some sort.
Along the way he asked if I thought I would be able to handle food. My eyes lit up, but my belly second guessed me. I opted to try applesauce with little confidence. My lack of confidence turned out to be a true finding. Vomiting ensued so I moved at a snail's pace. At day six I tried some dry cereal that soon turned in to shards of glass going slowly through my digestive system only increasing the pain I was experiencing. I gladly went two steps back and crawled even slower to solid food. By day eight, although I love my shakes and smoothies, I was ready to try again. This time I ordered scrambled eggs, a staple usually, and some potatoes, not hash browns. I made it through a few good bites. I was pleased to show my doctor when he stopped by. He wanted to see a little more before he would discharge me. At this stage of the game he had come to a decision to get me stable, discharging me, and continuing to search for a solid answer with me as an out patient. A couple of days later, I was up to half a plate of eggs with potatoes and showing clear signs of holding down fluids. He finally discharged me. He wanted to turn up the device a bit in hopes it would allow me to eat just a bit more. He also wanted to check back in two weeks for a follow-up with possibly another bump up. There were plenty of loose ends to tie up, but some strengthening and recovering time at home would be very beneficial.
I have seen him several times since. We have been left with the same lack of knowledge from others as well as the manufacturer. In another patient a replacement of leads or the device would be a no brainer, but my situation is different. What if my body just rejects what they do? What if my body is not strong enough to withstand another really major operation? How dangerous is this all? Neither my doctor nor I had any clue what our next step should be. He wanted some firm answers or strong opinions from others before he jumped the gun. In the meantime, he wanted to compile as much information as possible to present to someone or to show him light through the open door.
Many of these tests and scans were frightening, none painful in lieu of the pain we are trying to mend.
The last scan I had was a Gilliam scan, named after the man who discovered it. This is a three day nuclear medical test. The patient is injected with radioactive tracers. A special camera takes pictures from several angles while the patient lies still, usually on their backs, for 30 minutes to an hour. For me, that is when pain is at its most high. Flat on my back. On the third day a radiologist reads them and if something is seen at that time they will decide if more is needed. That extra imaging is an additional hour long scan. Lo and behold, I needed the additional time. According to the hospital staff my doctor would have the results within two days. He then would contact me with said results. Not my doctor. He is absolutely phenomenal, but he takes his time combing through everything before he says or does a thing. Admirable in this rush-and-go society.
Yesterday was my most recent appointment since the Gilliam scan. I am always a nervous wreck before appointments, no matter the health need, especially with my gastroenterologist. Add in the hectic freeway driving and navigating through Dallas equals an adventure in Laurentown. I was discouraged from the get-go with the simple number on the scale. I remind myself of my efforts in those moments. The doctor came in shortly after. Our assumptions proved true. The scan showed significant inflammation and irritation around the leads. The solution to this problem, you might ask. Remove the device. He decided replacing the leads would not help because there is no other casing. If my body is rejecting the casing, it would be wasted effort. The only solution is to remove the device. He then said we could leave it in if I could bare it until the battery dies. He and I went through a maze of, what we thought was, logic. I asked if there was any immediate danger such as additional damage being caused. He said there was not. I asked if it is affecting my small or large intestines and again he said it isn't. I asked how long the battery is estimated to last considering I am coming up on my second birthday/anniversary. Based on my settings his original estimate was three or four years back when I got it so that encouraged me. He said normally they simply replace the battery when it dies, but what he could do is replace the entire device and see where that leaves us. All the worries of keeping it in were somewhat hashed out. Ultimately, the decision is my own.
I have gone through this same scenario in my head for some time now. I have often told relatives and friends that I don't know what's worse, this pain or the pain I experienced before I had the stimulator. Now, that is exactly what I face. Here are my thoughts with some reliable opinions of others. With the device still in I am feeling pain, constant with sporadic jolts. Without the device I was constantly distended only growing as the day went on. That caused pain that increased throughout the day leaving me with a heating pad on my abdomen every night. With the stimulator in I am able to enjoy some "normal" food without intense fear. Without, I never knew when I could handle anything. With the stimulator vomiting and others are at a minimum. Without the stimulator it was daily and sometimes multiple times a day. With or without the stimulator I can hardly wear anything but elastic clothing. Without the stimulator I would have more canvas for my insulin pump and continuous glucose sensor. I hardly weigh a thing, but who knows if or how much that number will drop if the stimulator is removed. I was also reminded of how much more isolated I was before I had the stimulator. I would sleep a lot usually ending my day around 6:00p purely out of lack of energy and strength. I was also candidly reminded how close I was to death before I had the stimulator. In writing this post that statement has come to the forefront of my mind because it is a reminder that I celebrate the implant date by calling it my birthday. It was a second chance at life that day. I was blessed to have the option.
As I tie up my post for now, I leave you with the question. What would you do faced with a decision so serious, but choosing the lesser of two evils? Do not get me wrong, everyone has their cross to bare. I am simply asking how you would come to a decision. Would it take an instant to make a final decision? Or would it take some intense thought and needle searching for answers?
I will not lie and say I am ready to make a choice. I can openly say this is weighing heavy on me. The difficult part is finding an objective view because the pain is indescribable no matter the choice. The uncertainty and isolation are the same no matter the choice. I have love, support, a son who is a tornado of joy, a hard working husband, a nice place to call home, and more. I get out and interact, just not as much as my counterparts. I go on long walks. I read good books. I have so much and yet somehow the hardest decision clouds all of the amazing gifts.
Today I choose to hang in there. I choose to manage my symptoms as they stand. My doctor said my physical activity and life should not be an issue. He said to do what I can handle. So I choose to listen closely to the pain and work around it. Tomorrow, next week, next month I may change my mind. I may decide I can't take it anymore. I am at peace knowing what it is, but I am war between emotions and clear thoughts. And you yourself are probably reading this with a major decision in your life. Maybe we should just stick to the moment to see where it takes us.
As I said to my doc as I was leaving his office, "trust your gut" no pun intended....but it sure is funny if it was intentional.
Showing posts with label Gastroenterologist. Show all posts
Showing posts with label Gastroenterologist. Show all posts
Thursday, July 23, 2015
Wednesday, July 2, 2014
Pushing The Limits
Hello all. I know it has been some time, but I have had a few unusual months. I hope it can be a learning experience and eye opener for some.
On Mother's Day my son received his First Holy Communion. Although, I myself am not Catholic, I understand the importance and honor so I am so proud of him. (We will no longer discuss religion). Needless to say, the few weeks following up to that were very busy. I was worn down, for sure. It was also near the end of school when the kids are stir crazy. For a few months prior, I felt like I wasn't having as much movement in my stomach. The last time my stimulator had been adjusted was in November. I had a check-up in February, but the symptoms were somewhat brushed off. I knew it may be par for the course. For some reason, maybe the peak of stress, that weekend I instantly felt like I had before I had the stimulator.
Friday night after dinner I was doubled over in pain. We had gone out to a restaurant I frequent, but it is not completely gluten-free so cross contamination is a possibility. I assumed I had been "glutened". The next day I opted for a smoothie at lunch. With family in town for the big occasion, the girls went for a manicure/pedicure afternoon. While drinking the smoothie during the pedicure, I already felt symptoms of pain and bloating (this kind of bloating is not and does not feel like common bloating). As the day went on it seemed to get worse, but I knew there was no contamination. We went to a restaurant that is a real treat for me that evening. It has very strict procedures to avoid cross contamination. I ordered fish and chips which is high fat, low nutrition, low fiber, bad carbohydrates....but we all deserve to stray. Immediately, I was in pain just walking out to the parking lot. Again, I thought I had been glutened. Or, I thought the sudden feeling of being overwhelmed by family, a lot of activity, and a big stray from my body's normal routine may be too much.
With my routine being off, as many of us do, I was thoughtlessly neglecting some important factors of my life. I would accidently forget a batch of pills I am supposed to take at certain times of the day. That is SO important for seizure medications. And of course, different medications all metabolize differently, etc. You know the story. The increased activity and lack of rest wears on my body pretty badly. Add to all that, the manufacturer of a probiotic I have been taking for years now suddenly stopped making that probiotic. My local health food store tried to match it's quality with something else. They did supply me with a new probiotic, but unknowingly, it had dairy. A bad storm was at my door.
After the exciting weekend passed I did my best to get back on track. I assumed all my symptoms were directly connected to my choices those past few days. I had chalked up the prior, more mild symptoms from the previous several weeks to my fantasy of this wonderful device. I was reminding myself it is just a humanitarian device, not treatment; do not expect perfection. As soon as I noticed the dairy in the new probiotic, I immediately stopped using it. The notation was in the tiny print on the bottom of the bottles because there are very few guidelines for supplements and their labels. I just doubled up on an over the counter probiotic I know works very well for me. I knew it would be a few weeks until I would know if it was working in my new system. I tried to get back to my usual diet, but I wasn't strong enough. My mother-in-law stayed with us for a while after Mother's Day weekend. She loves to go out to eat and she enjoys dessert very much. She is allergic to wheat so it works out ok for me. I fell to the guilty pleasures. I also was allowing myself to relax a little. See if my body can be pushed a tad with regard to my diet. It didn't seem to like it very much at all. There were other factors in this complex equation as well.
We all have our limits, our pet peeves, our comforts, our space. As much as I love my mother-in-law, I had agreed to more than I can handle. She was supposed to stay for six weeks. Part way into the first week, my buttons were being pushed. I was trying intensely to smother my reactions because she deserves time with us, being further away now. Things got tense as the days passed. My husband works full time and my son was still in school so I was with her for several hours a day, just the two of us. That was difficult, especially when I am used to having down time for those few hours a day. In that stress, I again was missing medications and ignoring my routines completely. I continue to speak of routine because it is one of the best ways a diabetic can control blood sugar and my belly works on a routine as well (Lord, how I wouldn't love that to relax a bit). This is so dangerous. For anybody on medication, be strict with yourself. I was risking seizures, severe nerve pain throughout my body, and making my digestion practically impossible. So all this time I have a million excuses for why I felt so awful.
I finally decided to be a little vulnerable and put myself first until it fell back in to my multi-tasking life. I asked my husband to take his mother home. I felt she had spent some good quality time with us, but it was now pushing boundaries. He agreed. It ended up working out the best for her that way too, because her sister was ill and she wanted to get back to her. It worked out for us all.
Unfortunately, I still didn't get a chance to stop to breath. It seemed as though it was one thing after another. I was falling back into my routines food and medication wise, but somehow stilled missed doses every now and then. I had to take accountability for that so my feeling of malaise was not a surprise to me. I was on the edge of an important reminder. There is a difference in taking accountability and blaming yourself. Some things are out of our control.
It all came to a head one Sunday evening when life had finally felt on track for a few days. My husband grilled some fish for us and I made some oven-baked sweet potato fries. I had been trying to work fish into my diet because most meats are too difficult to digest while fish has the added benefit of incredible nutrients. When that meal was over, I knew something was really wrong. I, again, was doubled over in pain. My stomach was rock-hard and I looked as though I was half way through a pregnancy. I made my husband take a picture so I could so my gastroenterologist. The next morning only confirmed my fears. I was incredibly nauseous, as if I hadn't even been diagnosed with gastroparesis. My mouth was dry and I was so thirsty. No matter how much water I drank, my thirst couldn't be quenched. Everything tasted disgusting, bitter, almost metallic. I wanted nothing at all and all the water was making the nausea worse. By Wednesday I called my doctor.
Once I described my symptoms I could hear in his voice he too, knew something was wrong. He was booked but tried to get me in as soon as he could. Not only was he concerned about my nausea and lack of appetite, but he was also worried about infections. When I got in to see him I was doing somewhat better with less thirst and dry mouth, but still feeling awful otherwise. He did a usual physical exam and then wanted to check my stimulator. He brought out the Enterragator (I love the sound of that, like a superhero). There is a little plastic disk I place on my skin where the device is located. That disk is attached to a machine that looks like a label maker. He instantly had a look of confusion on his face. Now, I don't completely understand the lingo for this device whatsoever so forgive me if this part is vague. Basically, he had discovered that the stimulator had actually reset itself back to the settings they had first put in during surgery. That was minimal voltage to allow my smooth muscles the chance to work up to movement, let alone digestion. That meant a lot of my symptoms were because I was back to little or no movement of my stomach. This was a mystery to us all. He did also send me for a lot of lab work.
The next week I saw my endocrinologist. I was surprised to hear that through all the chaos, my A1C was 6.5. That is great because the closer diabetics are to 7 or lower, the less risk we have for complications. He also had no complaints about my blood sugar trends so he made no adjustments with my insulin. By downloading information from my pump and glucometer, he can see how my blood sugar levels are throughout the day usually looking at the last ninety days. With all the missteps I had made in that time, I had managed to do better than I had thought. Again, a blame I placed on myself. He checked the labs my gastroenterologist had run which included my A1C and my thyroid levels. Everything was normal which also meant there was no infection. My symptoms had some to do with me getting overwhelmed and letting that run me over while some had to do with the hiccup of my stimulator.
I was hopeful that soon I would feel a lot better. When my doctor had initially turned up my stimulator it made me more nauseous. While I was able to eat without pain or distention, I had no appetite and felt like my stomach had butterflies that were moving too quickly. I knew that would pass as I got used to the increased movement. My appetite slowly began to come back. I relaxed about my blood sugars, being more confident in my abilities. Then, for a few days I felt better. A day of fun with my son sparked a new hurdle.
My son and I share a passion for music and love for pushing our bodies physically. Are we weird? His cousin is a star gymnast at the ripe ol' age of eight so he likes to try out her tricks when she is not around. I happened to be in gymnastics when I was a child, but never made it very far. I am flexible and athletic though, so the few basic movements I remember coupled with my own childhood body contortions, I share with him. He had bought himself the new Michael Jackson CD (his idol) and we were having a blast listening to it while be acrobats in the living room. Once I was beat, it was time for dinner so I made my way to the kitchen. Suddenly, I felt faint to the point of feeling like I could pass out at any moment. I swigged some OJ quickly and grabbed my meter thinking the extra activity had run me low. My blood sugar was fine. Hhmm? As I went about making dinner it swept in and out, but I really felt weak. By the end of the evening I had a headache. I knew I had done too much.
Over the next few days this rush of faintness continued to pester me. I continuously monitored my blood sugar never seeing a low in these times of weakness. The headache increased and never stopped from the moment it started. I do have chronic migraines associated with my seizures so my neurologist has me on prevention medication as well as an emergency medication I can take at the onset of a migraine. After a few days, I realized it was an intense migraine and those feelings of faintness that now included cold sweats, were the aura. I needed to call the neurologist. That's exactly what I did. She told me to go ahead and take the emergency medication. If within a couple of hours it doesn't help, she instructed me to go to the hospital for IV medication. That was the last thing I wanted to do. I took the medication and waited. I gave my body a little while longer than she said, justifying my decision with my malabsorption. I told myself it had made a dent in the pain. I believe I was delusional. My husband was at work at the time and the next day he had to work open to close so I did not want to inconvenience him. Again, I had forgotten to put myself first.
Days passed with the pain still there and me deteriorating. I was weak, could not be in light, could barely handle sound, nauseous, and sleeping so much. I kept thinking I needed to give in and go to the hospital, but talking myself out of it each time. Hindsight is 20/20. I was really walking a tight rope. That Sunday my son had opening day for his basketball league this summer. I could not miss that so I did everything in my power to work up the strength for those two and a half hours. I made it that day. I did feel some improvement in pain and some increased strength so, again, I jumped the gun on thinking I passed the danger zone. It is Wednesday now and I still feel remnants of this everlasting migraine (I have had longer and worse before). My eyes and neck still hurt. I can handle very little noise. I am definitely irritable. So, when will this cycle stop?
Yesterday a light bulb went off in my head. Remember how I stressed the importance of timing with seizure medication? Well, it is also important not to miss a dose as that increases the chance of breakthrough seizures and/or migraines. Ding, ding, ding. My body has been put through the ringer for months now. I was pushing its limits. I was stressed out. I allowed myself to succumb to the thoughtlessness that a healthy individual can escape to when a special occasion arises. I missed the small print of dairy. I pushed aside nagging symptoms. I missed medications. I messed with the routine my body is most efficient in. As a patient I fell off track and blamed myself for the uncontrollables that were also part of the equation.
Let this be a lesson to us all. There is a reason for the labels on medications. Follow them along with your doctors' orders. Cut yourself some slack or the diseases take over you. We all know our bodies, healthy or not. I have said it before and will use it again, our bodies are smarter than any doctor out there so find a balance. I ignored so much and justified just as much. Now, and for a while, I pay the price. A song I love says, "if you're ever gonna find a silver lining, it's gotta be a cloudy day".
Although, in the midst of my wallowing, I was unable to get my ten month anniversary/birthday post for my new life with the Enterra gastric stimulator. Today marks day 336 on my journey to the one year mark which marks full estimated recovery time and a clear view of the device's effectiveness. I do believe my bump in the road will affect that a little bit for a short time. But nonetheless, I am here. Eleven months. One year as a resident of Texas. A rug ripped out from under my family and I has brought us to this point. This point of laughing and a little freedom. This point of about 15 pounds gained since surgery. This point I kind of take for granted until those past symptoms creep back or slap you in the face. Who can deny, this is amazing? I cannot be more thankful for the opportunity I have been given. I will do my best to stay conscious about its worth in my life. With that in your hand, it is like a diamond you never thought you'd see.
On Mother's Day my son received his First Holy Communion. Although, I myself am not Catholic, I understand the importance and honor so I am so proud of him. (We will no longer discuss religion). Needless to say, the few weeks following up to that were very busy. I was worn down, for sure. It was also near the end of school when the kids are stir crazy. For a few months prior, I felt like I wasn't having as much movement in my stomach. The last time my stimulator had been adjusted was in November. I had a check-up in February, but the symptoms were somewhat brushed off. I knew it may be par for the course. For some reason, maybe the peak of stress, that weekend I instantly felt like I had before I had the stimulator.
Friday night after dinner I was doubled over in pain. We had gone out to a restaurant I frequent, but it is not completely gluten-free so cross contamination is a possibility. I assumed I had been "glutened". The next day I opted for a smoothie at lunch. With family in town for the big occasion, the girls went for a manicure/pedicure afternoon. While drinking the smoothie during the pedicure, I already felt symptoms of pain and bloating (this kind of bloating is not and does not feel like common bloating). As the day went on it seemed to get worse, but I knew there was no contamination. We went to a restaurant that is a real treat for me that evening. It has very strict procedures to avoid cross contamination. I ordered fish and chips which is high fat, low nutrition, low fiber, bad carbohydrates....but we all deserve to stray. Immediately, I was in pain just walking out to the parking lot. Again, I thought I had been glutened. Or, I thought the sudden feeling of being overwhelmed by family, a lot of activity, and a big stray from my body's normal routine may be too much.
With my routine being off, as many of us do, I was thoughtlessly neglecting some important factors of my life. I would accidently forget a batch of pills I am supposed to take at certain times of the day. That is SO important for seizure medications. And of course, different medications all metabolize differently, etc. You know the story. The increased activity and lack of rest wears on my body pretty badly. Add to all that, the manufacturer of a probiotic I have been taking for years now suddenly stopped making that probiotic. My local health food store tried to match it's quality with something else. They did supply me with a new probiotic, but unknowingly, it had dairy. A bad storm was at my door.
After the exciting weekend passed I did my best to get back on track. I assumed all my symptoms were directly connected to my choices those past few days. I had chalked up the prior, more mild symptoms from the previous several weeks to my fantasy of this wonderful device. I was reminding myself it is just a humanitarian device, not treatment; do not expect perfection. As soon as I noticed the dairy in the new probiotic, I immediately stopped using it. The notation was in the tiny print on the bottom of the bottles because there are very few guidelines for supplements and their labels. I just doubled up on an over the counter probiotic I know works very well for me. I knew it would be a few weeks until I would know if it was working in my new system. I tried to get back to my usual diet, but I wasn't strong enough. My mother-in-law stayed with us for a while after Mother's Day weekend. She loves to go out to eat and she enjoys dessert very much. She is allergic to wheat so it works out ok for me. I fell to the guilty pleasures. I also was allowing myself to relax a little. See if my body can be pushed a tad with regard to my diet. It didn't seem to like it very much at all. There were other factors in this complex equation as well.
We all have our limits, our pet peeves, our comforts, our space. As much as I love my mother-in-law, I had agreed to more than I can handle. She was supposed to stay for six weeks. Part way into the first week, my buttons were being pushed. I was trying intensely to smother my reactions because she deserves time with us, being further away now. Things got tense as the days passed. My husband works full time and my son was still in school so I was with her for several hours a day, just the two of us. That was difficult, especially when I am used to having down time for those few hours a day. In that stress, I again was missing medications and ignoring my routines completely. I continue to speak of routine because it is one of the best ways a diabetic can control blood sugar and my belly works on a routine as well (Lord, how I wouldn't love that to relax a bit). This is so dangerous. For anybody on medication, be strict with yourself. I was risking seizures, severe nerve pain throughout my body, and making my digestion practically impossible. So all this time I have a million excuses for why I felt so awful.
I finally decided to be a little vulnerable and put myself first until it fell back in to my multi-tasking life. I asked my husband to take his mother home. I felt she had spent some good quality time with us, but it was now pushing boundaries. He agreed. It ended up working out the best for her that way too, because her sister was ill and she wanted to get back to her. It worked out for us all.
Unfortunately, I still didn't get a chance to stop to breath. It seemed as though it was one thing after another. I was falling back into my routines food and medication wise, but somehow stilled missed doses every now and then. I had to take accountability for that so my feeling of malaise was not a surprise to me. I was on the edge of an important reminder. There is a difference in taking accountability and blaming yourself. Some things are out of our control.
It all came to a head one Sunday evening when life had finally felt on track for a few days. My husband grilled some fish for us and I made some oven-baked sweet potato fries. I had been trying to work fish into my diet because most meats are too difficult to digest while fish has the added benefit of incredible nutrients. When that meal was over, I knew something was really wrong. I, again, was doubled over in pain. My stomach was rock-hard and I looked as though I was half way through a pregnancy. I made my husband take a picture so I could so my gastroenterologist. The next morning only confirmed my fears. I was incredibly nauseous, as if I hadn't even been diagnosed with gastroparesis. My mouth was dry and I was so thirsty. No matter how much water I drank, my thirst couldn't be quenched. Everything tasted disgusting, bitter, almost metallic. I wanted nothing at all and all the water was making the nausea worse. By Wednesday I called my doctor.
Once I described my symptoms I could hear in his voice he too, knew something was wrong. He was booked but tried to get me in as soon as he could. Not only was he concerned about my nausea and lack of appetite, but he was also worried about infections. When I got in to see him I was doing somewhat better with less thirst and dry mouth, but still feeling awful otherwise. He did a usual physical exam and then wanted to check my stimulator. He brought out the Enterragator (I love the sound of that, like a superhero). There is a little plastic disk I place on my skin where the device is located. That disk is attached to a machine that looks like a label maker. He instantly had a look of confusion on his face. Now, I don't completely understand the lingo for this device whatsoever so forgive me if this part is vague. Basically, he had discovered that the stimulator had actually reset itself back to the settings they had first put in during surgery. That was minimal voltage to allow my smooth muscles the chance to work up to movement, let alone digestion. That meant a lot of my symptoms were because I was back to little or no movement of my stomach. This was a mystery to us all. He did also send me for a lot of lab work.
The next week I saw my endocrinologist. I was surprised to hear that through all the chaos, my A1C was 6.5. That is great because the closer diabetics are to 7 or lower, the less risk we have for complications. He also had no complaints about my blood sugar trends so he made no adjustments with my insulin. By downloading information from my pump and glucometer, he can see how my blood sugar levels are throughout the day usually looking at the last ninety days. With all the missteps I had made in that time, I had managed to do better than I had thought. Again, a blame I placed on myself. He checked the labs my gastroenterologist had run which included my A1C and my thyroid levels. Everything was normal which also meant there was no infection. My symptoms had some to do with me getting overwhelmed and letting that run me over while some had to do with the hiccup of my stimulator.
I was hopeful that soon I would feel a lot better. When my doctor had initially turned up my stimulator it made me more nauseous. While I was able to eat without pain or distention, I had no appetite and felt like my stomach had butterflies that were moving too quickly. I knew that would pass as I got used to the increased movement. My appetite slowly began to come back. I relaxed about my blood sugars, being more confident in my abilities. Then, for a few days I felt better. A day of fun with my son sparked a new hurdle.
My son and I share a passion for music and love for pushing our bodies physically. Are we weird? His cousin is a star gymnast at the ripe ol' age of eight so he likes to try out her tricks when she is not around. I happened to be in gymnastics when I was a child, but never made it very far. I am flexible and athletic though, so the few basic movements I remember coupled with my own childhood body contortions, I share with him. He had bought himself the new Michael Jackson CD (his idol) and we were having a blast listening to it while be acrobats in the living room. Once I was beat, it was time for dinner so I made my way to the kitchen. Suddenly, I felt faint to the point of feeling like I could pass out at any moment. I swigged some OJ quickly and grabbed my meter thinking the extra activity had run me low. My blood sugar was fine. Hhmm? As I went about making dinner it swept in and out, but I really felt weak. By the end of the evening I had a headache. I knew I had done too much.
Over the next few days this rush of faintness continued to pester me. I continuously monitored my blood sugar never seeing a low in these times of weakness. The headache increased and never stopped from the moment it started. I do have chronic migraines associated with my seizures so my neurologist has me on prevention medication as well as an emergency medication I can take at the onset of a migraine. After a few days, I realized it was an intense migraine and those feelings of faintness that now included cold sweats, were the aura. I needed to call the neurologist. That's exactly what I did. She told me to go ahead and take the emergency medication. If within a couple of hours it doesn't help, she instructed me to go to the hospital for IV medication. That was the last thing I wanted to do. I took the medication and waited. I gave my body a little while longer than she said, justifying my decision with my malabsorption. I told myself it had made a dent in the pain. I believe I was delusional. My husband was at work at the time and the next day he had to work open to close so I did not want to inconvenience him. Again, I had forgotten to put myself first.
Days passed with the pain still there and me deteriorating. I was weak, could not be in light, could barely handle sound, nauseous, and sleeping so much. I kept thinking I needed to give in and go to the hospital, but talking myself out of it each time. Hindsight is 20/20. I was really walking a tight rope. That Sunday my son had opening day for his basketball league this summer. I could not miss that so I did everything in my power to work up the strength for those two and a half hours. I made it that day. I did feel some improvement in pain and some increased strength so, again, I jumped the gun on thinking I passed the danger zone. It is Wednesday now and I still feel remnants of this everlasting migraine (I have had longer and worse before). My eyes and neck still hurt. I can handle very little noise. I am definitely irritable. So, when will this cycle stop?
Yesterday a light bulb went off in my head. Remember how I stressed the importance of timing with seizure medication? Well, it is also important not to miss a dose as that increases the chance of breakthrough seizures and/or migraines. Ding, ding, ding. My body has been put through the ringer for months now. I was pushing its limits. I was stressed out. I allowed myself to succumb to the thoughtlessness that a healthy individual can escape to when a special occasion arises. I missed the small print of dairy. I pushed aside nagging symptoms. I missed medications. I messed with the routine my body is most efficient in. As a patient I fell off track and blamed myself for the uncontrollables that were also part of the equation.
Let this be a lesson to us all. There is a reason for the labels on medications. Follow them along with your doctors' orders. Cut yourself some slack or the diseases take over you. We all know our bodies, healthy or not. I have said it before and will use it again, our bodies are smarter than any doctor out there so find a balance. I ignored so much and justified just as much. Now, and for a while, I pay the price. A song I love says, "if you're ever gonna find a silver lining, it's gotta be a cloudy day".
Although, in the midst of my wallowing, I was unable to get my ten month anniversary/birthday post for my new life with the Enterra gastric stimulator. Today marks day 336 on my journey to the one year mark which marks full estimated recovery time and a clear view of the device's effectiveness. I do believe my bump in the road will affect that a little bit for a short time. But nonetheless, I am here. Eleven months. One year as a resident of Texas. A rug ripped out from under my family and I has brought us to this point. This point of laughing and a little freedom. This point of about 15 pounds gained since surgery. This point I kind of take for granted until those past symptoms creep back or slap you in the face. Who can deny, this is amazing? I cannot be more thankful for the opportunity I have been given. I will do my best to stay conscious about its worth in my life. With that in your hand, it is like a diamond you never thought you'd see.
Monday, January 20, 2014
Battle Scars and Victory Badges
My blog has been somewhat consistent along the way, but never every two weeks or once a month that you could set your calendar by. This has been very intentional because life doesn't happen in perfect increments. I don't believe fair knowledge or information can be contained to such strategic deadlines or timelines. Just like a new year's resolution, I intend on keeping it as consistent as possible to gain as many readers and followers as I can reach. Let's face it, many of our best intentions are not or cannot be kept. That being said, I would have liked to post this on my 5 month birthday/ anniversary, but life happened.
Twenty days ago I celebrated my 5 month birthday/ anniversary. I had a gastric stimulator implanted on July 31, 2013. Although I have explained this in prior posts, I would like to reiterate myself due to confusion and misunderstandings along the way. A gastric stimulator is a device that is implanted in to subcutaneous tissue in the abdomen. This tissue is the fat or loose layer between outer skin and muscle. Electrodes or leads are then guided through the abdomen into the lining of the stomach. These electrodes emit electronic stimulation of the stomach muscles much like a pacemaker does for the heart. Unlike a pacemaker, the gastric stimulator does not make rhythmic motion occur in the stomach. It does allow more movement of the paralyzed smooth muscles that aid in digestion.
This confusion or lack of knowledge became very apparent to me recently. After dealing with the most horrific stomach virus I had ever seen attack my 8 year old, my magnificent immune system allowed the demon in. One minute I was fine, the next minute I was emitting everything I had ingested and more..and more...and more. I called my aunt and husband within minutes of onset and within an hour I was nearly incoherent when my aunt came to the rescue. I will cut details, but within four hours I arrived at the hospital where my surgery had taken place.
By the time the ER staff triaged me (no more than 30 minutes after arrival) I was severely dehydrated to the point where even my limbs were stiff as a board. I had never experienced or seen this. During triage, I cannot tell you how adamantly my husband and I were in informing the staff of my complicated history but more importantly the stimulator. Initially, we were treated like all other patients and herded along like cattle until they saw the level of dehydration in combination with the diabetes and we were rushed to a room.
I had called my surgeon/ gastroenterologist as soon as the virus showed its face. He was out of the office in conferences with very bad phone reception, but the office staff did alert him of my condition. Celiac disease, inflammatory bowel disease, gastroparesis, and a gastric stimulator do not bode well in these conditions. He called my cell phone as they were putting an IV in. He spoke directly with the ER doctors to instruct them on what to do. He asked that they admit me for the night to be observed to make sure I was stable, but ultimately left the decision up to me telling the ER doctors I was a good patient who knew my body well (pat on the back). I was given fluids and medicine to stop the dirtiness and pain. After about 4 hours, the ER doctor checked in on me hinting at getting me to a bed upstairs, but I stood my ground and asked to be discharged to rest at home and be with my son. That's just what I did.
The days after I began having a strange revelation. All these years of disease and diagnoses and I still viewed myself the same as I always had. I mean, don't all of us miss the gradual changes as we grow and age? Suddenly I realized, what could have taken my son three days to get to (severe dehydration) yet never seen because his treatment came sooner than that, only took my body less than four hours. I was in such a state that I was unable to walk, struggled to talk, barely hanging on to consciousness let alone coherency. And here I am a week and a half out still struggling to balance my blood sugars and gain some normalcy in my gut. Rude awakening.
For the last 8-10 years I have complained of symptoms I had no idea were related to gastroparesis. I had never even heard of this condition before. I had these symptoms since I was young, as long as I remember. As I got older they got worse. I was diagnosed with Type I diabetes at 20 years old, which is typically linked to gastroparesis when management of the disease is lacking for a long period of time, often years. I believe these symptoms were not followed up on because I was young, my diabetes was/ is under good control, and it is highly unlikely. Thank goodness, the greater plan got me to doctors who found a good path for my treatment.
I have been through the ringer with these diseases. It has been one on top of another since the age of 12 or 13, but the snowball grew quickly these past five years. Moving from my college town back to my small hometown for a slower pace of life, thinking that would help somehow turned out to be a blessing and a curse. At the time I only knew of Hashimoto's disease, Type I diabetes, and Interstitial Cystitis. I had a baby boy and suddenly began having unexplained seizures. I was sent to the Mayo Clinic and the answers started slowly showing themselves as time went on, but those small town doctors often did more than they realized by giving pieces of the puzzle one at a time making it easier to see the bigger picture of what was necessary.
For the longest time, even now sometimes, I thought I was a victim and couldn't catch a break. I will be honest and say that it is difficult to manage 10-12 chronic illnesses at one time. On good emotional days, I see this as a great learning experience. On bad emotional days, I feel as though I cannot catch up or continue to juggle so many balls. I am lucky as a patient to have some very useful background knowledge of psychology and the medical field. Add to that, being the patient and knowledge goes up exponentially. Intertwining the science, logic, faith, hope, and emotions is a beautiful disaster.
I have been mentally motivating myself since this awaking has begun. When the days are physically tough they become emotionally tough and this cycle is hard to break. I enjoy walking or doing yoga for overall health. I could go into the details of how this aids digestion with good blood flow, gravity, and massages the digestive tract....but I won't (wink). This morning as I was walking and feeling down because every once in a while the routine falls out of place and our bodies pay for it. Missing pills here and there. A bad infusion sight with my insulin pump leading to grossly high blood sugars. All of this is under my control so I am really hard on myself when I make a misstep. This morning I thought 'Be realistic in the moment'. Of course, with two of us in the household incredibly shaken by this stomach bug, my husband just starting a new position at work and all the while trying to tend to us sickies, there is going to be some upheaval. 'Don't be so hard on yourself'.
As the thoughts were running through my head, the past few weeks kind of circled as well- good and bad. All the acute illness layered on top of the chronic illness layered on top of emotions and fears had my mind reeling. I realize that I often get stuck in my head. This tape keeps going when my days are tough. These thoughts take me too far in to the future with all these 'what-ifs' or 'statistics says' only bringing me down further leading me to try to take tighten control of what I am facing. Do you see where this is going? That's when it gets overwhelming and my mood is forever stuck in this terrified, determined rut. I am in this rut and the world is still going on around me as if nothing can stop it. You know what? Nothing can. That's when my mind said 'Be in the moment of what is really in front of you'.
While I waste time stuck inside myself trying to navigate this terrain, I miss the things that are so crucial to life and happiness. My son's contagious laugh every time his Daddy does something even remotely crude or embarrassing or when he sees a funny commercial. My husband's insatiable need to make jokes at ever turn while I try to act as if nothing he does is funny anymore. My own incredible accomplishments that I do not see while I am longing for those of my peers. The beauty that is showing itself outwardly as my body is gaining nourishment. All the new and interesting sites to take in around us in this new environment. So much to be seen and enjoyed, why waste time stuck inside the darkness? I realized that this is what may be my biggest fear. The moment.
All my life there has been a goal, a door, a window to reach. As a child you go through school waiting to get out of elementary. Then, excitedly making it to middle school and going through changes that allow more freedom and excitement anxiously awaiting high school. In high school, new love, new privileges, new experiences all leading up to college or a job. At each stage, working to make it to that next level. The whole way through it, we are planning our next move to get us to that next level. As a child, adolescent, and young adult we are so wrapped up in ourselves that we often live in the moment without a care in the world. I was abruptly stopped midway through this path that most of us take. I had to stop focusing on the joy and the path to suddenly focus on mortality.
Well, no one wants to face their own mortality. Did that become my Achilles heel? The moment at hand suddenly became too scary to face so my coping mechanism became ignoring it all together hoping to move past it. The unfortunate thing about this coping mechanism is that it is horrible and more importantly detrimental. Losing site of what is right in front of you is blinding. So I say, (in the great words of P!NK) stare fear in the face and say I just don't care.
I still have goals. Maybe not traditional but goals nonetheless. I still have dreams. They are not the dreams of my high school self nor my college self, but my 'now' self. I still have stages and levels yet to be reached. I still have faith. I still have hope. I still have joy. I still have love. What I don't need is to forget all that I still have while focusing on all the don't-haves.
I wrote a post a while back talking about my dad and sister. My dad has passed and my sister lives in California. They both have Type I diabetes. I do not know or cannot see clearly if this disease has precedents over the others. To me, it is the biggest after APS Type II. Possibly because I have seen it in them and it has terrified me and haunted me my entire life. I miss them both terribly ALL THE TIME. In that post, I wrote about how the longing is so painful and the disease so devastating yet when I shift my perspective I see how this is one thing that ties us together no matter our distance. This is one thing that we all understand about each other in unspoken ways. That perspective is what I have held on to since that realization. (Sometimes the greatest things come from that darkness)
Deciding that I am the champion here has lead me to this point. Embracing the battle scars I have on my belly and gold medal you can see poking out of my lower abdomen. Looking at old pictures of when I was a star athlete or competitive long distance runner shows me what I was when I was considered to be in peak physical condition. Knowing I am stronger now yet thinking 'I can get back to that'. That, in this case, meaning weight or size. Still telling myself 'but it is ok if you don't' knowing that as long as I continue to do the best I can, I cannot get down on myself. I can't expect more from myself than I do from others. My victory badge will remind me of all that keeps me grounded.
Within days of getting my victory badge it began taking on a new meaning. I have been contacted by others who share my struggle. Some of them even asking me questions of guidance and inspiration....ME?! My blog, my words, my life in the flesh is reaching people and making an impact. The thing I had strived for, thinking it would be done in the medical field with scrubs or a white coat, has been replaced by my inner thoughts and outward strength and resilience. That is the best feeling in the world. This victory badge not only ties me to my sister and dad, but to all of those who share my struggle and victories in their own lives. My medical alert, my victory badge, my connections, ME.
Twenty days ago I celebrated my 5 month birthday/ anniversary. I had a gastric stimulator implanted on July 31, 2013. Although I have explained this in prior posts, I would like to reiterate myself due to confusion and misunderstandings along the way. A gastric stimulator is a device that is implanted in to subcutaneous tissue in the abdomen. This tissue is the fat or loose layer between outer skin and muscle. Electrodes or leads are then guided through the abdomen into the lining of the stomach. These electrodes emit electronic stimulation of the stomach muscles much like a pacemaker does for the heart. Unlike a pacemaker, the gastric stimulator does not make rhythmic motion occur in the stomach. It does allow more movement of the paralyzed smooth muscles that aid in digestion.
This confusion or lack of knowledge became very apparent to me recently. After dealing with the most horrific stomach virus I had ever seen attack my 8 year old, my magnificent immune system allowed the demon in. One minute I was fine, the next minute I was emitting everything I had ingested and more..and more...and more. I called my aunt and husband within minutes of onset and within an hour I was nearly incoherent when my aunt came to the rescue. I will cut details, but within four hours I arrived at the hospital where my surgery had taken place.
By the time the ER staff triaged me (no more than 30 minutes after arrival) I was severely dehydrated to the point where even my limbs were stiff as a board. I had never experienced or seen this. During triage, I cannot tell you how adamantly my husband and I were in informing the staff of my complicated history but more importantly the stimulator. Initially, we were treated like all other patients and herded along like cattle until they saw the level of dehydration in combination with the diabetes and we were rushed to a room.
I had called my surgeon/ gastroenterologist as soon as the virus showed its face. He was out of the office in conferences with very bad phone reception, but the office staff did alert him of my condition. Celiac disease, inflammatory bowel disease, gastroparesis, and a gastric stimulator do not bode well in these conditions. He called my cell phone as they were putting an IV in. He spoke directly with the ER doctors to instruct them on what to do. He asked that they admit me for the night to be observed to make sure I was stable, but ultimately left the decision up to me telling the ER doctors I was a good patient who knew my body well (pat on the back). I was given fluids and medicine to stop the dirtiness and pain. After about 4 hours, the ER doctor checked in on me hinting at getting me to a bed upstairs, but I stood my ground and asked to be discharged to rest at home and be with my son. That's just what I did.
The days after I began having a strange revelation. All these years of disease and diagnoses and I still viewed myself the same as I always had. I mean, don't all of us miss the gradual changes as we grow and age? Suddenly I realized, what could have taken my son three days to get to (severe dehydration) yet never seen because his treatment came sooner than that, only took my body less than four hours. I was in such a state that I was unable to walk, struggled to talk, barely hanging on to consciousness let alone coherency. And here I am a week and a half out still struggling to balance my blood sugars and gain some normalcy in my gut. Rude awakening.
For the last 8-10 years I have complained of symptoms I had no idea were related to gastroparesis. I had never even heard of this condition before. I had these symptoms since I was young, as long as I remember. As I got older they got worse. I was diagnosed with Type I diabetes at 20 years old, which is typically linked to gastroparesis when management of the disease is lacking for a long period of time, often years. I believe these symptoms were not followed up on because I was young, my diabetes was/ is under good control, and it is highly unlikely. Thank goodness, the greater plan got me to doctors who found a good path for my treatment.
I have been through the ringer with these diseases. It has been one on top of another since the age of 12 or 13, but the snowball grew quickly these past five years. Moving from my college town back to my small hometown for a slower pace of life, thinking that would help somehow turned out to be a blessing and a curse. At the time I only knew of Hashimoto's disease, Type I diabetes, and Interstitial Cystitis. I had a baby boy and suddenly began having unexplained seizures. I was sent to the Mayo Clinic and the answers started slowly showing themselves as time went on, but those small town doctors often did more than they realized by giving pieces of the puzzle one at a time making it easier to see the bigger picture of what was necessary.
For the longest time, even now sometimes, I thought I was a victim and couldn't catch a break. I will be honest and say that it is difficult to manage 10-12 chronic illnesses at one time. On good emotional days, I see this as a great learning experience. On bad emotional days, I feel as though I cannot catch up or continue to juggle so many balls. I am lucky as a patient to have some very useful background knowledge of psychology and the medical field. Add to that, being the patient and knowledge goes up exponentially. Intertwining the science, logic, faith, hope, and emotions is a beautiful disaster.
I have been mentally motivating myself since this awaking has begun. When the days are physically tough they become emotionally tough and this cycle is hard to break. I enjoy walking or doing yoga for overall health. I could go into the details of how this aids digestion with good blood flow, gravity, and massages the digestive tract....but I won't (wink). This morning as I was walking and feeling down because every once in a while the routine falls out of place and our bodies pay for it. Missing pills here and there. A bad infusion sight with my insulin pump leading to grossly high blood sugars. All of this is under my control so I am really hard on myself when I make a misstep. This morning I thought 'Be realistic in the moment'. Of course, with two of us in the household incredibly shaken by this stomach bug, my husband just starting a new position at work and all the while trying to tend to us sickies, there is going to be some upheaval. 'Don't be so hard on yourself'.
As the thoughts were running through my head, the past few weeks kind of circled as well- good and bad. All the acute illness layered on top of the chronic illness layered on top of emotions and fears had my mind reeling. I realize that I often get stuck in my head. This tape keeps going when my days are tough. These thoughts take me too far in to the future with all these 'what-ifs' or 'statistics says' only bringing me down further leading me to try to take tighten control of what I am facing. Do you see where this is going? That's when it gets overwhelming and my mood is forever stuck in this terrified, determined rut. I am in this rut and the world is still going on around me as if nothing can stop it. You know what? Nothing can. That's when my mind said 'Be in the moment of what is really in front of you'.
While I waste time stuck inside myself trying to navigate this terrain, I miss the things that are so crucial to life and happiness. My son's contagious laugh every time his Daddy does something even remotely crude or embarrassing or when he sees a funny commercial. My husband's insatiable need to make jokes at ever turn while I try to act as if nothing he does is funny anymore. My own incredible accomplishments that I do not see while I am longing for those of my peers. The beauty that is showing itself outwardly as my body is gaining nourishment. All the new and interesting sites to take in around us in this new environment. So much to be seen and enjoyed, why waste time stuck inside the darkness? I realized that this is what may be my biggest fear. The moment.
All my life there has been a goal, a door, a window to reach. As a child you go through school waiting to get out of elementary. Then, excitedly making it to middle school and going through changes that allow more freedom and excitement anxiously awaiting high school. In high school, new love, new privileges, new experiences all leading up to college or a job. At each stage, working to make it to that next level. The whole way through it, we are planning our next move to get us to that next level. As a child, adolescent, and young adult we are so wrapped up in ourselves that we often live in the moment without a care in the world. I was abruptly stopped midway through this path that most of us take. I had to stop focusing on the joy and the path to suddenly focus on mortality.
Well, no one wants to face their own mortality. Did that become my Achilles heel? The moment at hand suddenly became too scary to face so my coping mechanism became ignoring it all together hoping to move past it. The unfortunate thing about this coping mechanism is that it is horrible and more importantly detrimental. Losing site of what is right in front of you is blinding. So I say, (in the great words of P!NK) stare fear in the face and say I just don't care.
I still have goals. Maybe not traditional but goals nonetheless. I still have dreams. They are not the dreams of my high school self nor my college self, but my 'now' self. I still have stages and levels yet to be reached. I still have faith. I still have hope. I still have joy. I still have love. What I don't need is to forget all that I still have while focusing on all the don't-haves.
I wrote a post a while back talking about my dad and sister. My dad has passed and my sister lives in California. They both have Type I diabetes. I do not know or cannot see clearly if this disease has precedents over the others. To me, it is the biggest after APS Type II. Possibly because I have seen it in them and it has terrified me and haunted me my entire life. I miss them both terribly ALL THE TIME. In that post, I wrote about how the longing is so painful and the disease so devastating yet when I shift my perspective I see how this is one thing that ties us together no matter our distance. This is one thing that we all understand about each other in unspoken ways. That perspective is what I have held on to since that realization. (Sometimes the greatest things come from that darkness)
Deciding that I am the champion here has lead me to this point. Embracing the battle scars I have on my belly and gold medal you can see poking out of my lower abdomen. Looking at old pictures of when I was a star athlete or competitive long distance runner shows me what I was when I was considered to be in peak physical condition. Knowing I am stronger now yet thinking 'I can get back to that'. That, in this case, meaning weight or size. Still telling myself 'but it is ok if you don't' knowing that as long as I continue to do the best I can, I cannot get down on myself. I can't expect more from myself than I do from others. My victory badge will remind me of all that keeps me grounded.
Within days of getting my victory badge it began taking on a new meaning. I have been contacted by others who share my struggle. Some of them even asking me questions of guidance and inspiration....ME?! My blog, my words, my life in the flesh is reaching people and making an impact. The thing I had strived for, thinking it would be done in the medical field with scrubs or a white coat, has been replaced by my inner thoughts and outward strength and resilience. That is the best feeling in the world. This victory badge not only ties me to my sister and dad, but to all of those who share my struggle and victories in their own lives. My medical alert, my victory badge, my connections, ME.
Wednesday, November 20, 2013
Sweet 16
Today marks 16 sweet weeks after surgery to implant the Enterra, a gastric stimulator. I have to say it has been on my mind all day long just how far I have come in these 16 weeks. Then I start to think how far I have come since this time last year. Although this path has been long and often painful emotionally and physically, as I look back I can see how every person, every doctor, every step along the way has been so crucial in my journey to this point.
I talk a lot about how there were not as many resources for me in New Mexico. This is a true statement. I lived in New Mexico for 30 years. Lived. My very first pediatrician was almost a part of our family. He referred me to my first internist when I was a preteen. She told us then that the big picture of my health would take time to come into view, but there was definitely a quirk they weren't catching. In college I was bounced around for a little while until a really great endocrinologist began chipping away at the pieces. Moving back to small town New Mexico had its share of challenges, but I will say this as firmly as I can, those small town doctors saved my life. They got me to specialists who sent me to the Mayo Clinic. That opened my eyes to realize I really needed to take this seriously. I am no immortal. Those small town doctors eventually put puzzle pieces together to refer me to Dallas for this very procedure. Then, they referred me to Johns Hopkins to be sure their plan was the right plan. So whatever little resources New Mexico had, it once again is the Land of Enchantment because a few gems saved my life.
To get to the business side, for those of you interested in my progress as well as this incredible technology behind the gastric stimulator, today is a good day. Last week I had an appointment with my surgeon/ gastroenterologist and the Enterragator. I tell my husband I am like Iron Man and the Enterragator, which helps the doctor control my stimulator, is what keeps me running. I am still working on the lingo so forgive me for not talking technically about the device and what happens at the appointments that leads to adjusting the stimulation and whatnot. I have hit a plateau since my last appointment and blog post. Not to worry though, a plateau is level not a decline! I am still worth a buck, but no more. My appetite has decreased as well as an increase in nausea and discomfort. Based on that as well as what the Enterragator told my doctor, he bumped up the stimulation just a bit once again. This is normal, as with anything in your body there is an ebb and flow that we are manually trying to keep in equilibrium. The discouraging part, I have to slow down on challenging my diet and return back to "safe foods" for a while. "Safe foods" meaning things I could eat before the procedure without too much trouble. I am welcoming the nutritious smoothies, fruit bars, and eggs...not that I ever cut them out completely, but they are again replacing more indulgent meals. I suppose if anytime is a good time, now is because they have become comfort foods for me. Autumn is perfect for comfort foods.
I am getting more used to having the device in my abdomen. The pain from the surgery is starting to lessen more and more everyday. It is still a little tender right at the site of implantation. If I do too much, my stomach muscles get sore. Bending and twisting along with certain clothing irritate it. But overall, these little inconveniences are nothing compared to what I was dealing with in the past. I rarely get a distended belly anymore. I actually feel food moving along my system in a more natural manner. Gas and regularity are not an issue. The biggest blessing is being able to eat three meals a day without feeling like I ate the entire McDonald's menu in one sitting.
Thanksgiving is coming up and everyone is wondering what I will be doing. I will gladly tell you, I will be doing the same as everyone else. I will be relaxing, spending time with family, and enjoying my son's time off from school. I will not partake in the traditional turkey, stuffing, and pumpkin pie meal that most Americans are accustomed to for Thanksgiving. Too many years have past with me trying to conform to a world I no longer fit in always ending with me in tears and pain for nearly a week thereafter. This year I decided to cut myself some slack. Why am I forcing down food that is only satisfying when it is on my tongue for a few short seconds? Instead, I think I will make a meal the day before to cut down on stress. I will make something that is a treat to myself as well as my family, but it will be a feast in my sense. I am sure there will be enough left-overs for me to enjoy the next day. On Thanksgiving itself, I will join family and friends for their feasts and enjoy their company with no pressure and no misery nightcap. Maybe some Thanksgiving in the future (next year?) I can enjoy the traditional meal and if not, oh well. I will make my own traditions and still enjoy life just as much as the next gal.
All in all, I can genuinely say this is my sweet 16!
I talk a lot about how there were not as many resources for me in New Mexico. This is a true statement. I lived in New Mexico for 30 years. Lived. My very first pediatrician was almost a part of our family. He referred me to my first internist when I was a preteen. She told us then that the big picture of my health would take time to come into view, but there was definitely a quirk they weren't catching. In college I was bounced around for a little while until a really great endocrinologist began chipping away at the pieces. Moving back to small town New Mexico had its share of challenges, but I will say this as firmly as I can, those small town doctors saved my life. They got me to specialists who sent me to the Mayo Clinic. That opened my eyes to realize I really needed to take this seriously. I am no immortal. Those small town doctors eventually put puzzle pieces together to refer me to Dallas for this very procedure. Then, they referred me to Johns Hopkins to be sure their plan was the right plan. So whatever little resources New Mexico had, it once again is the Land of Enchantment because a few gems saved my life.
To get to the business side, for those of you interested in my progress as well as this incredible technology behind the gastric stimulator, today is a good day. Last week I had an appointment with my surgeon/ gastroenterologist and the Enterragator. I tell my husband I am like Iron Man and the Enterragator, which helps the doctor control my stimulator, is what keeps me running. I am still working on the lingo so forgive me for not talking technically about the device and what happens at the appointments that leads to adjusting the stimulation and whatnot. I have hit a plateau since my last appointment and blog post. Not to worry though, a plateau is level not a decline! I am still worth a buck, but no more. My appetite has decreased as well as an increase in nausea and discomfort. Based on that as well as what the Enterragator told my doctor, he bumped up the stimulation just a bit once again. This is normal, as with anything in your body there is an ebb and flow that we are manually trying to keep in equilibrium. The discouraging part, I have to slow down on challenging my diet and return back to "safe foods" for a while. "Safe foods" meaning things I could eat before the procedure without too much trouble. I am welcoming the nutritious smoothies, fruit bars, and eggs...not that I ever cut them out completely, but they are again replacing more indulgent meals. I suppose if anytime is a good time, now is because they have become comfort foods for me. Autumn is perfect for comfort foods.
I am getting more used to having the device in my abdomen. The pain from the surgery is starting to lessen more and more everyday. It is still a little tender right at the site of implantation. If I do too much, my stomach muscles get sore. Bending and twisting along with certain clothing irritate it. But overall, these little inconveniences are nothing compared to what I was dealing with in the past. I rarely get a distended belly anymore. I actually feel food moving along my system in a more natural manner. Gas and regularity are not an issue. The biggest blessing is being able to eat three meals a day without feeling like I ate the entire McDonald's menu in one sitting.
Thanksgiving is coming up and everyone is wondering what I will be doing. I will gladly tell you, I will be doing the same as everyone else. I will be relaxing, spending time with family, and enjoying my son's time off from school. I will not partake in the traditional turkey, stuffing, and pumpkin pie meal that most Americans are accustomed to for Thanksgiving. Too many years have past with me trying to conform to a world I no longer fit in always ending with me in tears and pain for nearly a week thereafter. This year I decided to cut myself some slack. Why am I forcing down food that is only satisfying when it is on my tongue for a few short seconds? Instead, I think I will make a meal the day before to cut down on stress. I will make something that is a treat to myself as well as my family, but it will be a feast in my sense. I am sure there will be enough left-overs for me to enjoy the next day. On Thanksgiving itself, I will join family and friends for their feasts and enjoy their company with no pressure and no misery nightcap. Maybe some Thanksgiving in the future (next year?) I can enjoy the traditional meal and if not, oh well. I will make my own traditions and still enjoy life just as much as the next gal.
All in all, I can genuinely say this is my sweet 16!
Thursday, October 17, 2013
12 Weeks Proud
I am able to eat a bit more variety these days. I tried P.F. Changs the other day with a cousin of mine. I had the chicken fried rice and it was amazing. No trouble with bloating or distension. I also have been able to eat a family recipe of green chile stew that I love and had to avoid the last several years because it would cause so much pain, bloating, distension, and it felt as if it just sat in my belly for days. No longer :-) And of course, as I mentioned earlier, hamburgers and French fries with no regrets later. I am taken aback at times with how well I handle things that were so frighteningly painful before.
I can't report any weight gain or changes at this time. My appointments are beginning to be further apart. I enjoy that a lot. I will see the gastroenterologist as well as the Medtronic rep who is guiding my doctor through checking the status of and possibly adjusting my gastric stimulator on November 14th. I plan to have a good report.
I will say that I still deal with a lot of pain. There is a lot of cramping as well as continuing incision pain and extreme tenderness around the pocket that holds the device. Most times I eat (at least 98% of the time) it feels like I drank a cold glass of water and went for a quick sprint. It can last anywhere from 30 minutes to a few hours. I was told that is just the stomach itself getting used to moving again and possible getting used to the electrodes. I assume for someone as sick and weakened as I at the time of surgery, it would definitely take a great deal of time to rebound.
Emotionally, I am still on a roller coaster. I am so thankful for this new life. It is so difficult to wake up in the morning and still not feel refreshed. That's an issue I have had for a while and may not be directly linked to the gastroparesis or malnutrition. It is difficult to have that cramping after meals because I wonder if there is something wrong. That is probably a direct reflection of my personality. It is difficult to feel the pain of the surgery and the device in the shower, in bed, as I am dressing, when I tie my shoes, when I sit down.....it could go on. It is just an adjustment. I believe the pain is a way to get me used to the ways I need to modify my movements and actions to accommodate for the device in the long term. If I get in the habit of protecting it and favoring it due to pain now, it will be a habit by the time the pain subsides so I will continue to modify my actions.
As I go around and establish with new doctors in the area I find myself feeling alien in this world. Although many doctors have heard of the device, it is clear in talking to them that they really have a very basic idea of what it is. That carries over into everyday life because most people have no idea what gastroparesis is let alone a gastric stimulator. When I say I have just had surgery three months ago, I am looked at as if I should be back to normal life. Inquisitive eyes follow me often, but never ask any questions. In talking to a friend who has a rare illness that is very different than my own she said she says, "Believe me, it is more awkward for me than you." I found that to be a funny response.
I walk around this thin 30 year old woman. I am often dressed in athletic clothing because of the elastic waste bands and their comfort for my situation. I am picky at the grocery store, picky at restaurants, and often do not accept drinks or snacks at friends or families offer. For those who do not know, I can only imagine what thoughts run through their minds. I feel the need to constantly defend myself or justify my behavior. Then I battle myself thinking I owe them nothing and I have earned my stripes. A Type A people pleaser at its best may not be very conducive to chronic illness and rehabilitation for major injuries.
Ultimately, I have made it this far. There are ups and downs but that's life with or without chronic illness. These battle scars are a reminder of how strong I am physically and mentally. They are a reminder to take it easy or a free pass that I fought and scavenged for and fully deserve. Whatever we face in our days, take time to look back and pat yourself on the back for accomplishments others may not have noticed. Accolades do not always come in the form of trophies or certificates- they come in the form of a satisfied belly after a meal, or the smile on my son's face when we pull up to a pizza place he enjoys. It is great to see the sun rise everyday and know I have another chance to live this life.
Wednesday, October 2, 2013
Life wins
Time sure does fly. I am officially about 10 weeks out of surgery as of tomorrow. Internet was down for a bit so there was a lapse in my posts. I wanted to give an 8 week update and then move on to regular blog posts and monthly then yearly updates of the progress on my gastric stimulator. Life happens and here we are. So we'll go with a 10 week update.
I have now made almost all the rounds to all the specialists I need to see and/or establish with in Texas. Of course my endocrinologist and gastroenterologist were already familiar with me due to the surgery and hospitalization. I needed to be established with a rheumatologist and a neurologist. Both of which I had very interesting encounters with I am sure you would enjoy, but I'll get to that after the update.
Things are progressing well. I am now officially independent. My mother-in-law, who was here for additional support with household chores and womanly things, went home the first week of September and within a few days my husband returned to work full time. This means I am back to being stay-at-home Momma making meals, cleaning, dishes, and daily errands. Anyone whose knows what it is like to run a household can appreciate how hard it is; I now have a new appreciation for how difficult it is and myself (pat on the back).
I have been increasingly sore and tired. Let me say that I am taking it very slow. This is just a surgery that entails a lot of adjustments along the way. Little things like getting dressed, putting on shoes, getting in and out of a vehicle, standing in lines, and long conversations all use your abdominal muscles a lot more than we realize. The bending and twisting and stretching and stabilizing all takes extra effort. I can feel it all, but will try to hold on to the memory of these feelings as an eternal appreciation for the miraculous human body.
The cramping of my actual stomach is starting to subside. The muscle that hasn't been used in years had been prominently reminding me of it's weakness as soon as I tried to eat soon after the surgery. In the beginning it was a constant cramp as if I had drank a glass of water and sprinted down the street, but it has moved towards a sporadic cramp once or twice a day after a challenging meal. A challenging meal is anything larger than a pediatric sized meal with any normal amount of fat. Because I was used to a minimal diet of very basic, bland foods I am able to avoid this fairly easily, but as my appetite increases and my body craves more I am challenging my thriving stomach as recommended by doctors and reps from the manufacturer of the gastric neurostimulator. Depending on who you speak with the device can be referred to by many names i.e. gastric neurostimulator (the box reads this), gastric stimulator, stimulator, gastric pacemaker (which it is not).
The incisions themselves are mostly healed and closed. When I saw my gastroenterologist yesterday those were his words. I feel them; tender, sensitive, tight. The pocket where the device is has tightened up. The swelling has gone down enough that I can somewhat tell what it will look like for the duration. In saying that, it is close to my belly button, hip bone, and lower ab of a six pack (which I don't have either I just do not know the technical term) so it is an adjustment. A twist, a turn, a stretch, or a bend can push it in an awkward way or pinch the tender tissue inside the pocket. I assume that will lessen in time as well. It is bearable and probably a necessary evil to help me adjust my activity to accommodate my new addition.
Now, you are curious about my eating and weight aren't you? Well, breakfast is the same (a protein shake and a banana), but much more comfortable. I also wake up hungry most days. Before the surgery my appetite was nonexistent. I am adding more variety to my other meals. Meats, especially red meat, was a real challenge before. I always felt like it sat like a brick in my belly. Now, I even crave it sometimes. I have stuck to shredded beef and ground beef. I am able to eat chicken and pork more regularly as well, but again in small portions and usually ground or shredded in some way. I still enjoy the staples I got so used to such as eggs and smoothies very often. Sometimes that chose is made by my appetite and sometimes it is made out of necessity (need to eat overrides desire to eat). And most importantly, at my appointment yesterday I officially broke the 100 mark. Although, I don't think specific numbers are important here because every body is different, that mark to me was a major goal. In total I have gained 5 1/2 pounds. From here on out I will only refer to my weight gain in numbers but no need to divulge my weight. This blog is meant to inspire, inform, and connect people and I intend to stick to that aspiration.
Let's move on to something I thing is crucial for anyone going through this same situation or something similar that can relate. The emotional side. It is a roller coaster just being chronically ill. It has been an even more eventful roller coaster this last year on this journey that lead me to Ft. Worth, Texas and the gastric stimulator. And the ride does not stop there....at implantation. The physical pain does a number on your psyche. I can and have said this surgery is equivalent if not worse than childbirth and I do have a child I birthed. The recovery is long.
Imagine getting up every single morning and stubbing the same toe. Stubbing a toe hurts, bad if done right. First thing in the morning, that puts you in a bit of a bad mood for a bit. Then the pain lingers and lingers throughout your day only getting worse as you tire. By the end of the day, you want to throw in the towel, put your foot up, and hope tomorrow is better. That's a bad analogy, but you get the idea. The twisted thing about this recovery is that the body is now getting the nutrition and substance it has been needing for so long. This means the mind recovers quicker than the body; your mind runs on glucose. So the mind becomes willing as soon as the pain is bearable enough to push through, but the body is not capable of "pushing through" as of yet. This leads to frustration and feelings of guilt and inadequacy in certain areas.
Moving on to being a woman going through this........gaining the weight. I am going to be more candid in this than I would prefer, but people seeking connection and validation need to know this. I have been unhappy with my appearance for years. First, it was the weight loss and that it was happening so quickly. Then, it became the fact that I looked sickly thin. Also, the pain in my belly lead me to wear looser fitting clothes than I had before and has kept me limited in that area. I have longed for a more womanly figure for a while now and all I need is a little weight to get there. I also know I need weight to function and live- not only is that fact known academically but I also physical felt extremely weak. Now, the weight is coming on just as is intended. 5 1/2 pounds in a little less than four weeks is a lot for a woman to take in, especially a woman with a Type A personality whose minds never stops. My mind runs straight to the worst case scenario.
What would be the worst case scenario? I ask myself as I am struggling with this happy/sad feeling I got last night after the elation wore off from a good doctor visit. Is there one? Then I think, "No..." I am so grateful for this new lease on life. I am so thankful for the time I have with my family. I am so thankful I am not declining with no answers, resources, or support. I am so thankful to have some normal meals and be able to leave my home for more than a few hours at a time with less fear. It is a battle between vanity and life. Ultimately life wins.
Vanity, I am learning, goes out the window. It should have long ago, but I am a 30 year old woman living in our society so I cannot avoid some normal insecurities. Having a pocket watch sized device in my abdomen is noticeable and with the sensitivity of the area, I have to dress loose. Being only 5' 3" and making it to a buck make that easy because everything is big, but it is difficult because I still want my clothes to be flattering and womanly. My skin is a bit of a mess because it has always been sensitive and any change exacerbates it along with my hair and nails that have not gotten proper nutrition in some time. Rashes, acne, peeling nails, frizzy hair, etc.
Writing this is so cathartic though. That was part of the intention in starting the blog to begin with. In writing the ups and downs I am going through throughout this trial I am facing, I am seeing how blatantly obvious and wonderful the ups are and that makes me feel so silly for even noticing or complaining about the difficulties. All of the body issues will come to an equilibrium in time and will no longer be a complaint. I am sure I will find my new self in this new skin and be able to dress it beautifully and comfortably or at least to my liking. Maybe someday I will get back to a routine with household chores and daily activities......and maybe I won't, but it will all get done. One giant learning experience that will serve me greatly.
Ending with a smile. Glad to be ten weeks out. Glad to be in an environment with resources and support. Glad to have a new life with my family. Glad to eat. Glad to be alive. Glad to spend quality time with my miraculous son.
Time for dinner.
I have now made almost all the rounds to all the specialists I need to see and/or establish with in Texas. Of course my endocrinologist and gastroenterologist were already familiar with me due to the surgery and hospitalization. I needed to be established with a rheumatologist and a neurologist. Both of which I had very interesting encounters with I am sure you would enjoy, but I'll get to that after the update.
Things are progressing well. I am now officially independent. My mother-in-law, who was here for additional support with household chores and womanly things, went home the first week of September and within a few days my husband returned to work full time. This means I am back to being stay-at-home Momma making meals, cleaning, dishes, and daily errands. Anyone whose knows what it is like to run a household can appreciate how hard it is; I now have a new appreciation for how difficult it is and myself (pat on the back).
I have been increasingly sore and tired. Let me say that I am taking it very slow. This is just a surgery that entails a lot of adjustments along the way. Little things like getting dressed, putting on shoes, getting in and out of a vehicle, standing in lines, and long conversations all use your abdominal muscles a lot more than we realize. The bending and twisting and stretching and stabilizing all takes extra effort. I can feel it all, but will try to hold on to the memory of these feelings as an eternal appreciation for the miraculous human body.
The cramping of my actual stomach is starting to subside. The muscle that hasn't been used in years had been prominently reminding me of it's weakness as soon as I tried to eat soon after the surgery. In the beginning it was a constant cramp as if I had drank a glass of water and sprinted down the street, but it has moved towards a sporadic cramp once or twice a day after a challenging meal. A challenging meal is anything larger than a pediatric sized meal with any normal amount of fat. Because I was used to a minimal diet of very basic, bland foods I am able to avoid this fairly easily, but as my appetite increases and my body craves more I am challenging my thriving stomach as recommended by doctors and reps from the manufacturer of the gastric neurostimulator. Depending on who you speak with the device can be referred to by many names i.e. gastric neurostimulator (the box reads this), gastric stimulator, stimulator, gastric pacemaker (which it is not).
The incisions themselves are mostly healed and closed. When I saw my gastroenterologist yesterday those were his words. I feel them; tender, sensitive, tight. The pocket where the device is has tightened up. The swelling has gone down enough that I can somewhat tell what it will look like for the duration. In saying that, it is close to my belly button, hip bone, and lower ab of a six pack (which I don't have either I just do not know the technical term) so it is an adjustment. A twist, a turn, a stretch, or a bend can push it in an awkward way or pinch the tender tissue inside the pocket. I assume that will lessen in time as well. It is bearable and probably a necessary evil to help me adjust my activity to accommodate my new addition.
Now, you are curious about my eating and weight aren't you? Well, breakfast is the same (a protein shake and a banana), but much more comfortable. I also wake up hungry most days. Before the surgery my appetite was nonexistent. I am adding more variety to my other meals. Meats, especially red meat, was a real challenge before. I always felt like it sat like a brick in my belly. Now, I even crave it sometimes. I have stuck to shredded beef and ground beef. I am able to eat chicken and pork more regularly as well, but again in small portions and usually ground or shredded in some way. I still enjoy the staples I got so used to such as eggs and smoothies very often. Sometimes that chose is made by my appetite and sometimes it is made out of necessity (need to eat overrides desire to eat). And most importantly, at my appointment yesterday I officially broke the 100 mark. Although, I don't think specific numbers are important here because every body is different, that mark to me was a major goal. In total I have gained 5 1/2 pounds. From here on out I will only refer to my weight gain in numbers but no need to divulge my weight. This blog is meant to inspire, inform, and connect people and I intend to stick to that aspiration.
Imagine getting up every single morning and stubbing the same toe. Stubbing a toe hurts, bad if done right. First thing in the morning, that puts you in a bit of a bad mood for a bit. Then the pain lingers and lingers throughout your day only getting worse as you tire. By the end of the day, you want to throw in the towel, put your foot up, and hope tomorrow is better. That's a bad analogy, but you get the idea. The twisted thing about this recovery is that the body is now getting the nutrition and substance it has been needing for so long. This means the mind recovers quicker than the body; your mind runs on glucose. So the mind becomes willing as soon as the pain is bearable enough to push through, but the body is not capable of "pushing through" as of yet. This leads to frustration and feelings of guilt and inadequacy in certain areas.
Moving on to being a woman going through this........gaining the weight. I am going to be more candid in this than I would prefer, but people seeking connection and validation need to know this. I have been unhappy with my appearance for years. First, it was the weight loss and that it was happening so quickly. Then, it became the fact that I looked sickly thin. Also, the pain in my belly lead me to wear looser fitting clothes than I had before and has kept me limited in that area. I have longed for a more womanly figure for a while now and all I need is a little weight to get there. I also know I need weight to function and live- not only is that fact known academically but I also physical felt extremely weak. Now, the weight is coming on just as is intended. 5 1/2 pounds in a little less than four weeks is a lot for a woman to take in, especially a woman with a Type A personality whose minds never stops. My mind runs straight to the worst case scenario.
What would be the worst case scenario? I ask myself as I am struggling with this happy/sad feeling I got last night after the elation wore off from a good doctor visit. Is there one? Then I think, "No..." I am so grateful for this new lease on life. I am so thankful for the time I have with my family. I am so thankful I am not declining with no answers, resources, or support. I am so thankful to have some normal meals and be able to leave my home for more than a few hours at a time with less fear. It is a battle between vanity and life. Ultimately life wins.
Vanity, I am learning, goes out the window. It should have long ago, but I am a 30 year old woman living in our society so I cannot avoid some normal insecurities. Having a pocket watch sized device in my abdomen is noticeable and with the sensitivity of the area, I have to dress loose. Being only 5' 3" and making it to a buck make that easy because everything is big, but it is difficult because I still want my clothes to be flattering and womanly. My skin is a bit of a mess because it has always been sensitive and any change exacerbates it along with my hair and nails that have not gotten proper nutrition in some time. Rashes, acne, peeling nails, frizzy hair, etc.
Writing this is so cathartic though. That was part of the intention in starting the blog to begin with. In writing the ups and downs I am going through throughout this trial I am facing, I am seeing how blatantly obvious and wonderful the ups are and that makes me feel so silly for even noticing or complaining about the difficulties. All of the body issues will come to an equilibrium in time and will no longer be a complaint. I am sure I will find my new self in this new skin and be able to dress it beautifully and comfortably or at least to my liking. Maybe someday I will get back to a routine with household chores and daily activities......and maybe I won't, but it will all get done. One giant learning experience that will serve me greatly.
Ending with a smile. Glad to be ten weeks out. Glad to be in an environment with resources and support. Glad to have a new life with my family. Glad to eat. Glad to be alive. Glad to spend quality time with my miraculous son.
Time for dinner.
Monday, September 2, 2013
Snack For The Soul
When I referred to my surgery date in my last post as my new birthday, I had no idea how deep those feelings would really run. Every day I wake up feeling a little different. Every day there is some flash of novelty and comfort in my new world. Every day I become increasingly more aware of all the gifts that surround us. That all sounds so mushy and cliché, but it is so blatantly true.
I just had my 4-week follow up appointment with both of the surgeons who performed the procedure of implanting the Enterra Gastric Neurostimulator. I have to say that I had been really nervous about the appointments. I seemed to have hit a plateau shortly after the procedure and didn't seem to be improving in terms of nausea, fullness, and lack of appetite. For some reason in my mind, the natural processes in the world are in my control...... (Although it never seems to work out the way I want it). I was preparing myself to hear all the things I had done wrong since the surgery that would be halting my progress. I was so prepared for all the wrong things.
My first appointment was with Dr. Weiner, my gastroenterologist, and the Medtronic representative. Medtronic is the manufacturer of the Enterra and the rep helps the doctor become familiar with the treatment and technology.
At that appointment they asked about my symptoms. They were concerned with my level of nausea because that was one of my worst symptoms prior to surgery. I am happy to report that it has gone down at least 50%-75%. I complained of a lot of cramping. I describe it as chugging a glass of water and then sprinting...that kind of side cramp is what I feel. They explained to me that my stomach, the muscle, hasn't been used this way in a long time. As with any atrophied muscle, it will fatigue, cramp, and get sore. That's normal. I also complained of constipation. (TMI? Well this blog is to help inform, comfort, or inspire those in similar situations, so we have to talk truth) Dr. Weiner talked about my medications and my absorption rate. With my stomach processing more before things move into the small intestine, I am absorbing more of everything (Woot Woot!!) this leading to my system getting overloaded. He reduced one medication in half.
All in all, the symptoms, pain, soreness, and novelties are all normal and a positive sign. The rep said, statistically, I am in the top 5% of patients in terms of progress at this point. The doctor was really pleased as were my husband and I. Even the nurse and front office woman were in on the excitement as we have gone through this journey together.
"Weight gain at this point?" you may ask. Well, I am almost at my pre-op appointment weight again, but I am going in the right direction and that is more than we can say for the past several years. Appetite? I wake up hungry nearly every day. My portions are no bigger, just a better variety and more consistent. My diet restrictions are the same but I am able to enjoy more meats, vegetables, and fat because they no longer sit in my stomach for hours on end. I still get a distended belly every time I eat or drink. That will likely continue to happen just as an untreatable symptom of gastroparesis, but my stomach should grow a little so I can eat better portion sizes in time.
To check the device itself (remember it is sewn into a pocket of subcutaneous tissue in my abdomen) they held a large smart-phone looking thing (called The Enterragater, gggrrr) up to my belly where the device is, pressed it against my skin, and the screen started showing them information. Based on that information, which all looked positive, along with my symptoms they decided to bump the voltage up a notch. They told me to expect a fluttering sensation and possible nausea for the next 24 hours but it would subside. Essentially, that should increase my stomach activity a little more. They were right. Almost instantaneously, with a giggle, like feeling your baby kick for the first time, the fluttering began. I am lucky to say it never made me nauseous, just tired.
Unfortunately, with the start of the new school year I managed to catch a nasty cold. This has been a small setback, flaring up some unwanted symptoms, but what cold doesn't? We were told we should be able to see full effects of the device in 6 months to a year. I also have managed to unknowingly, in the fog of euphoria, ingest dairy, chicken, and strawberries - all of which I have allergies of some degree to. So a few more kinks, but thus is life.
The second surgeon merely needed to check the incisions. He works closely with Dr. Weiner and so he was already up to date on my progress and was pleased. Can I type that word enough? It is such a foreign feeling to me to walk out of doctor's offices with hope and positive reports.
I am (actively trying) not to allow the fear to hold me back. I am still trying to be conscious, careful, and conscientious, but I am human and sometimes forget to double or triple check ingredient lists or that I had strawberries yesterday so they aren't allowed for a few days if I would like to continue to feel well. And I don't beat myself up over a minor mistake because it will pass.
My diabetes is a bit of a roller coaster right now. I see my endocrinologist next week. With absorption rates changing and fluctuating so are my insulin needs and blood sugar levels. I have been struggling with a lot of lows which has only encouraged more calories. This crazy balancing act that is life can be fun sometimes. I am serious; I am enjoying this challenge.
I am slowly moving back in to normal daily activities. I am beginning to move better and with less pain. It will be a work in progress to learn to move with this inside of me, but as with anything, we adapt. I am smiling more. I am laughing more. I am enjoying more. It is amazing what a snack can do for your soul.
I just had my 4-week follow up appointment with both of the surgeons who performed the procedure of implanting the Enterra Gastric Neurostimulator. I have to say that I had been really nervous about the appointments. I seemed to have hit a plateau shortly after the procedure and didn't seem to be improving in terms of nausea, fullness, and lack of appetite. For some reason in my mind, the natural processes in the world are in my control...... (Although it never seems to work out the way I want it). I was preparing myself to hear all the things I had done wrong since the surgery that would be halting my progress. I was so prepared for all the wrong things.
My first appointment was with Dr. Weiner, my gastroenterologist, and the Medtronic representative. Medtronic is the manufacturer of the Enterra and the rep helps the doctor become familiar with the treatment and technology.
At that appointment they asked about my symptoms. They were concerned with my level of nausea because that was one of my worst symptoms prior to surgery. I am happy to report that it has gone down at least 50%-75%. I complained of a lot of cramping. I describe it as chugging a glass of water and then sprinting...that kind of side cramp is what I feel. They explained to me that my stomach, the muscle, hasn't been used this way in a long time. As with any atrophied muscle, it will fatigue, cramp, and get sore. That's normal. I also complained of constipation. (TMI? Well this blog is to help inform, comfort, or inspire those in similar situations, so we have to talk truth) Dr. Weiner talked about my medications and my absorption rate. With my stomach processing more before things move into the small intestine, I am absorbing more of everything (Woot Woot!!) this leading to my system getting overloaded. He reduced one medication in half.
All in all, the symptoms, pain, soreness, and novelties are all normal and a positive sign. The rep said, statistically, I am in the top 5% of patients in terms of progress at this point. The doctor was really pleased as were my husband and I. Even the nurse and front office woman were in on the excitement as we have gone through this journey together.
"Weight gain at this point?" you may ask. Well, I am almost at my pre-op appointment weight again, but I am going in the right direction and that is more than we can say for the past several years. Appetite? I wake up hungry nearly every day. My portions are no bigger, just a better variety and more consistent. My diet restrictions are the same but I am able to enjoy more meats, vegetables, and fat because they no longer sit in my stomach for hours on end. I still get a distended belly every time I eat or drink. That will likely continue to happen just as an untreatable symptom of gastroparesis, but my stomach should grow a little so I can eat better portion sizes in time.
To check the device itself (remember it is sewn into a pocket of subcutaneous tissue in my abdomen) they held a large smart-phone looking thing (called The Enterragater, gggrrr) up to my belly where the device is, pressed it against my skin, and the screen started showing them information. Based on that information, which all looked positive, along with my symptoms they decided to bump the voltage up a notch. They told me to expect a fluttering sensation and possible nausea for the next 24 hours but it would subside. Essentially, that should increase my stomach activity a little more. They were right. Almost instantaneously, with a giggle, like feeling your baby kick for the first time, the fluttering began. I am lucky to say it never made me nauseous, just tired.
Unfortunately, with the start of the new school year I managed to catch a nasty cold. This has been a small setback, flaring up some unwanted symptoms, but what cold doesn't? We were told we should be able to see full effects of the device in 6 months to a year. I also have managed to unknowingly, in the fog of euphoria, ingest dairy, chicken, and strawberries - all of which I have allergies of some degree to. So a few more kinks, but thus is life.
The second surgeon merely needed to check the incisions. He works closely with Dr. Weiner and so he was already up to date on my progress and was pleased. Can I type that word enough? It is such a foreign feeling to me to walk out of doctor's offices with hope and positive reports.
I am (actively trying) not to allow the fear to hold me back. I am still trying to be conscious, careful, and conscientious, but I am human and sometimes forget to double or triple check ingredient lists or that I had strawberries yesterday so they aren't allowed for a few days if I would like to continue to feel well. And I don't beat myself up over a minor mistake because it will pass.
My diabetes is a bit of a roller coaster right now. I see my endocrinologist next week. With absorption rates changing and fluctuating so are my insulin needs and blood sugar levels. I have been struggling with a lot of lows which has only encouraged more calories. This crazy balancing act that is life can be fun sometimes. I am serious; I am enjoying this challenge.
I am slowly moving back in to normal daily activities. I am beginning to move better and with less pain. It will be a work in progress to learn to move with this inside of me, but as with anything, we adapt. I am smiling more. I am laughing more. I am enjoying more. It is amazing what a snack can do for your soul.
Friday, July 19, 2013
Unexpected Joy From Unexpected Change
I am excited to say that a new chapter of my life has begun. I moved to Ft. Worth, TX. It happened so quickly. After being torn between staying where my heart is or moving to a place where my medical situation could be better handled, I got a shove in the right direction. With the help of my family, working as a ninja-intervention team, we found a place to stay that met our needs. Within days of locking a place down, our home was packed and moved. The week of July 4th, we made Texas our new home.
Within days, I quickly noticed what a God-send it was for my family to be so aggressive. I have an unlimited amount of options for food at much cheaper prices than I ever enjoyed in New Mexico. Shortly after arriving, my Dallas based gastroenterologist called with a date for the gastric stimulator implant surgery. In saying that, they requested I make a few appointments and undergo some last minute testing.
By now, I have been here with my son for two weeks. I have lessened my food bill by at least a third, which will come in handy when medical bills start rolling in. I have met with both doctors who will be involved in the implant surgery and I am being evaluated to get my gallbladder removed finally. Before, no doctor wanted to do surgery for fear of unknown risks.
I cannot even explain how good this all feels, as strange as that may sound. Not only was it nice to be readily available for all these appointments, but it was even nicer to only travel a few miles to get home to rest thereafter. I have also enjoyed the company and support of family who live close by. Beyond all that, and possibly most important, I feel like part of the human race again.
For the past 5 years, limitations have been put on my life time and time again. Friends dropped off the less active I got. They stopped calling and interacting with me with claims that I was no longer acting like myself. All of this I can understand because I often wanted to run from the uncomfortable situation I was facing, but I did not have the luxury. I got strange looks for my thinning frame and even stranger looks for my peculiar diet. Adding to that, it was a daily stress and mission to ensure I had food available that I could ingest without increasing my symptoms. I felt like an outcast. I felt like a spectacle. I felt like an alien.
I am in this new environment. Although I have not had the opportunity to make new friends, I have enjoyed the company of family. I can go to any store, even a corner store, and there are options available for me. On top of that, with as busy as I have been, it has been difficult to stay on my routine. That would normally be very troublesome, but here I can even go through a drive thru and order something. This is not to say that I am falling in to bad habits. The accommodations so many places offer for specialized diets and healthy eating are amazing.
No one looks at me strangely when I order so specifically. No one looks at me strangely when my shopping cart is filled with all natural foods minus gluten and dairy. I am sure my small frame and casual dress does spark a few questions in people's minds but you never see it in their face. Everyone from customer service to health care workers to the average Joe has been so pleasant and welcoming.
My son is adjusting well. Of course, he was sad and scared about the move but we explained all the perks we'd be able to take advantage of. As the weeks have passed and he has seen and experienced so.much, he is sinking in to comfort. He enjoys his cousins company and hasn't even spent time with them all yet. He enjoys all the outings Momma is able to make. We have found a school close by and he thinks it looks inviting. He has seen the hospital where the surgery will take place and met one of the surgeons. He feels confident that improvement is sure to follow.
With all this, I am feeling so blessed. God never answers our prayers exactly as we lay them out or in the manner we wish them to be answered, but he answers them all the same. He has laid this path that I have reluctantly followed for years. Here I am, seeing a light at the end of this tunnel of the unknown. All my life my health has been a mystery. Now, all the doctors agree. All the doctors believe the whole picture is in view. No doctor is acting scared or overwhelmed. It is a feeling of peace and ease I cannot describe.
We are still awaiting my husband's job situation to be ironed out, but we know it is simply a matter of time. It has been a challenge to be here without him.and go through all these life changing events over the phone. We miss him terribly and count the days until it is all final. Nonetheless, the feeling of grace fills my son & myself.
Gastric stimulator, we await you and welcome your implantation. July 31 is the big day. I hope to get back online and fill you all in on my new bionic body and the great changes we expect to come.
Within days, I quickly noticed what a God-send it was for my family to be so aggressive. I have an unlimited amount of options for food at much cheaper prices than I ever enjoyed in New Mexico. Shortly after arriving, my Dallas based gastroenterologist called with a date for the gastric stimulator implant surgery. In saying that, they requested I make a few appointments and undergo some last minute testing.
By now, I have been here with my son for two weeks. I have lessened my food bill by at least a third, which will come in handy when medical bills start rolling in. I have met with both doctors who will be involved in the implant surgery and I am being evaluated to get my gallbladder removed finally. Before, no doctor wanted to do surgery for fear of unknown risks.
I cannot even explain how good this all feels, as strange as that may sound. Not only was it nice to be readily available for all these appointments, but it was even nicer to only travel a few miles to get home to rest thereafter. I have also enjoyed the company and support of family who live close by. Beyond all that, and possibly most important, I feel like part of the human race again.
For the past 5 years, limitations have been put on my life time and time again. Friends dropped off the less active I got. They stopped calling and interacting with me with claims that I was no longer acting like myself. All of this I can understand because I often wanted to run from the uncomfortable situation I was facing, but I did not have the luxury. I got strange looks for my thinning frame and even stranger looks for my peculiar diet. Adding to that, it was a daily stress and mission to ensure I had food available that I could ingest without increasing my symptoms. I felt like an outcast. I felt like a spectacle. I felt like an alien.
I am in this new environment. Although I have not had the opportunity to make new friends, I have enjoyed the company of family. I can go to any store, even a corner store, and there are options available for me. On top of that, with as busy as I have been, it has been difficult to stay on my routine. That would normally be very troublesome, but here I can even go through a drive thru and order something. This is not to say that I am falling in to bad habits. The accommodations so many places offer for specialized diets and healthy eating are amazing.
No one looks at me strangely when I order so specifically. No one looks at me strangely when my shopping cart is filled with all natural foods minus gluten and dairy. I am sure my small frame and casual dress does spark a few questions in people's minds but you never see it in their face. Everyone from customer service to health care workers to the average Joe has been so pleasant and welcoming.
My son is adjusting well. Of course, he was sad and scared about the move but we explained all the perks we'd be able to take advantage of. As the weeks have passed and he has seen and experienced so.much, he is sinking in to comfort. He enjoys his cousins company and hasn't even spent time with them all yet. He enjoys all the outings Momma is able to make. We have found a school close by and he thinks it looks inviting. He has seen the hospital where the surgery will take place and met one of the surgeons. He feels confident that improvement is sure to follow.
With all this, I am feeling so blessed. God never answers our prayers exactly as we lay them out or in the manner we wish them to be answered, but he answers them all the same. He has laid this path that I have reluctantly followed for years. Here I am, seeing a light at the end of this tunnel of the unknown. All my life my health has been a mystery. Now, all the doctors agree. All the doctors believe the whole picture is in view. No doctor is acting scared or overwhelmed. It is a feeling of peace and ease I cannot describe.
We are still awaiting my husband's job situation to be ironed out, but we know it is simply a matter of time. It has been a challenge to be here without him.and go through all these life changing events over the phone. We miss him terribly and count the days until it is all final. Nonetheless, the feeling of grace fills my son & myself.
Gastric stimulator, we await you and welcome your implantation. July 31 is the big day. I hope to get back online and fill you all in on my new bionic body and the great changes we expect to come.
Thursday, January 17, 2013
Next Stop: Johns Hopkins Medical Center
My biggest connection to the outside world (sadly) is Facebook. I only friend close friends and family members to keep things as private as possible. This blog has connected me to a more diverse group, but I absolutely enjoy it. I think it is important for me to update everyone because I have been vague on Facebook and in person relating to my most recent health issues. Not only that, there may be someone out there in search of answers or a connection going through something very similar to me. We cannot look at illness as a weakness and hide it from the world. We need to share our stories so that real change can happen for those who are suffering from complicated cases.
My last post I mentioned that it was suggested I get a "J Tube" inserted. This is a tube that goes into the small intestine, by-passing the stomach, to get nutrients directly in to the intestines. This comes as a result of continued weight loss even with treatment for gastroparesis. This weight loss has left me with very little subcutaneous fat to insert my insulin pump. Without that tissue, insulin is not absorbed properly. That in turn results in erratic and dangerous blood sugars. A domino effect we would like to stop as quickly as we can because it is starting to trickle down and exacerbate much of my other illnesses.
After much debate amongst myself, my doctors, family, and my nutritionist the conclusion has been made that it is necessary. My first consultation appointment with my surgeon will be January 29th. To my hungry body, that seems so far away. Also, at that time they plan to remove my gallbladder. About a year ago they found calcification in my gallbladder but opted against surgery at the time because I was too weak to withstand it, and they did not want to make me vulnerable to infection. Now, we can kill two birds with one stone. In my opinion, that's a gold medal.
For more than 7 years eating has been difficult. The last two years have been the absolute worst. It started with some bad bloating. Then came some sharp lower abdominal pain. (I won't get graphic but for sufferers it is important to note the following) My bowels changed in color, shape, consistency, frequency, you name it! Slowly over time I noticed I was feeling overly full frequently. As time passed the bloating, pain, and fullness became worse to the point of frequent Emergency Room visits with little answers. Finally a gastroenterologist came into the picture and began knocking down one brick at a time. At this point he has found pernicious anemia, gastroparesis, Celiac disease, abnormal cells in my colon and rectum (he is certain this is an inflammatory bowel disease but has no conclusive evidence as to the specific type yet), and calcifications on my gallbladder. Even with treating all of this in addition to treating the nerve dysfunction (which should help digestion) I continue to decline and symptoms are worsening. I cannot tell you how badly I want to eat an "allergen free" brownie right now that has been in my cupboard for days just screaming my name and yet my gut is telling me it is impossible. I equate that to torture (excuse my dramatics).
The "J Tube" happens to be a temporary plan. Once the debate amongst professionals commenced, it was strongly suggested (for the umpteenth time in the past 5 years) that I seek answers and help at Johns Hopkins University. Luckily for me, considering my symptoms, no doctor referral was needed and they quickly scheduled me for an appointment May 22. So, for the four months while we wait and hope for answers and relief I will use the "J Tube" as a supplemental way to add calories and nutrients to my diet. My local doctors (NM) are leaving it up to Johns Hopkins to take it from here. They have all thrown in the towel, admitting my case is too complicated and sensitive. They will follow me closely and hope to pick up where Johns Hopkins leaves off.
That adds a whole new can of worms to the mix. As if finances were not already a worry for the majority of Americans, we are not immune. With my health issues we certainly have to budget tightly and sacrifice many luxuries. We make ends meet, but with this most recent news we know we are in over our heads. My life has no price tag. I am a daughter, a sister, a wife, a mother, a daughter-in-law, an aunt, and a friend. I will not let this conquer me without a fight. I will not let this conquer me. I will not let this take precious time away from my son. With the support of great family members and offers by great friends, there has been a benefit account set up for me to help my husband and I with medical and travel expenses we are sure to incur over the next several months. I will admit it is a desperate plea, but all pride is lost in times of desperation.
My family members have also set up a blog site themselves. We know the coming months will be trying, but I do not want to keep people wondering. The sight is set up for my benefit/ donation account. The blog will be updated as information rolls in due to the fact that I may be too tired, weak, or out of touch to update my own blog. Please visit this sight for more information http://helplaurenheredia.
I have hope that this will be a new chapter in my life. I know more life changes are to come, but I have high hopes they will all be for the better. I wish to improve the quality of life for my son, my husband, my family, and of course myself!
I am a fighter.
My last post I mentioned that it was suggested I get a "J Tube" inserted. This is a tube that goes into the small intestine, by-passing the stomach, to get nutrients directly in to the intestines. This comes as a result of continued weight loss even with treatment for gastroparesis. This weight loss has left me with very little subcutaneous fat to insert my insulin pump. Without that tissue, insulin is not absorbed properly. That in turn results in erratic and dangerous blood sugars. A domino effect we would like to stop as quickly as we can because it is starting to trickle down and exacerbate much of my other illnesses.
After much debate amongst myself, my doctors, family, and my nutritionist the conclusion has been made that it is necessary. My first consultation appointment with my surgeon will be January 29th. To my hungry body, that seems so far away. Also, at that time they plan to remove my gallbladder. About a year ago they found calcification in my gallbladder but opted against surgery at the time because I was too weak to withstand it, and they did not want to make me vulnerable to infection. Now, we can kill two birds with one stone. In my opinion, that's a gold medal.
For more than 7 years eating has been difficult. The last two years have been the absolute worst. It started with some bad bloating. Then came some sharp lower abdominal pain. (I won't get graphic but for sufferers it is important to note the following) My bowels changed in color, shape, consistency, frequency, you name it! Slowly over time I noticed I was feeling overly full frequently. As time passed the bloating, pain, and fullness became worse to the point of frequent Emergency Room visits with little answers. Finally a gastroenterologist came into the picture and began knocking down one brick at a time. At this point he has found pernicious anemia, gastroparesis, Celiac disease, abnormal cells in my colon and rectum (he is certain this is an inflammatory bowel disease but has no conclusive evidence as to the specific type yet), and calcifications on my gallbladder. Even with treating all of this in addition to treating the nerve dysfunction (which should help digestion) I continue to decline and symptoms are worsening. I cannot tell you how badly I want to eat an "allergen free" brownie right now that has been in my cupboard for days just screaming my name and yet my gut is telling me it is impossible. I equate that to torture (excuse my dramatics).
The "J Tube" happens to be a temporary plan. Once the debate amongst professionals commenced, it was strongly suggested (for the umpteenth time in the past 5 years) that I seek answers and help at Johns Hopkins University. Luckily for me, considering my symptoms, no doctor referral was needed and they quickly scheduled me for an appointment May 22. So, for the four months while we wait and hope for answers and relief I will use the "J Tube" as a supplemental way to add calories and nutrients to my diet. My local doctors (NM) are leaving it up to Johns Hopkins to take it from here. They have all thrown in the towel, admitting my case is too complicated and sensitive. They will follow me closely and hope to pick up where Johns Hopkins leaves off.
That adds a whole new can of worms to the mix. As if finances were not already a worry for the majority of Americans, we are not immune. With my health issues we certainly have to budget tightly and sacrifice many luxuries. We make ends meet, but with this most recent news we know we are in over our heads. My life has no price tag. I am a daughter, a sister, a wife, a mother, a daughter-in-law, an aunt, and a friend. I will not let this conquer me without a fight. I will not let this conquer me. I will not let this take precious time away from my son. With the support of great family members and offers by great friends, there has been a benefit account set up for me to help my husband and I with medical and travel expenses we are sure to incur over the next several months. I will admit it is a desperate plea, but all pride is lost in times of desperation.
My family members have also set up a blog site themselves. We know the coming months will be trying, but I do not want to keep people wondering. The sight is set up for my benefit/ donation account. The blog will be updated as information rolls in due to the fact that I may be too tired, weak, or out of touch to update my own blog. Please visit this sight for more information http://helplaurenheredia.
I have hope that this will be a new chapter in my life. I know more life changes are to come, but I have high hopes they will all be for the better. I wish to improve the quality of life for my son, my husband, my family, and of course myself!
I am a fighter.
Monday, April 16, 2012
Juggling Act
I guess it's time for another check in. I would like to write something once a week to keep things predictable, but I have come to learn that is easier said than done. I did not set out to have a blog with constant updates of tests and procedures along with results, but that seems to be what is consuming my life these days.
Most recently I had follow up appointments with a few of my doctors. Most important would have to be the gastroenterologist. As many of my readers know, I have been dealing with numerous digestive issues for several years. This past year has been by far the most difficult. I have been on treatment for pernicious anemia, celiac disease, as well as chronic inflammatory bowel disease but I have still been plagued with symptoms. My doctor decided to order a gastric emptying study. I assumed this would come back with nothing because the majority of my pain and discomfort are in my lower abdomen. Out of sheer desperation for relief and lack of motivation to argue, I agreed to the test.
The next day I went to our local hospital, fasting. I was feed one radio-active scrambled egg. I was laid on a table, and x-rays were taking every minute for the next 90 minutes to follow the egg through my stomach. 2 weeks later, I am laying in bed with my husband as we are both sick from "the crud" (sinus infection from hell) and my phone rings. The nurse from my GI tells me the study came back abnormal. My stomach is functioning at less than 50%. "That's not good" she says.
Turns out, I now have been diagnosed with gastroparesis. Literally, my stomach is paralyzed. Now, this is a common complication of diabetics, which I am. The interesting part about it is, I have complained of these symptoms since I was pregnant with my son who is now 6. I have been told over and over that it sounded like I may have gastroparesis, but that only happens after decades of uncontrolled high blood sugars. So, not one doctor ever tested for it. After some research, I learn now that it is also a complication of patients with connective tissue disease, which I also have. Ggrreeaatt!
I have been on a new medication, Erythromycin, to treat this for about 5 days. I have to say I am showing signs of improvement. I will not lie. I do not enjoy this. I am not looking forward to my future. I am 29 years old and, at this point, I am completely overwhelmed with the amount of health issues I have to juggle and balance everyday.
To add to that, I have had a pain in my outer right thigh for several months. I have an insulin pump that is constantly attached to my hip so initially I thought I was rubbing my thigh with it every time I would go to the bathroom or change clothes. I ignored the pain and tried to be more conscious of how rough I was on my body. The pain never ceased and a lump started to appear. I had an MRI done. Thankfully, all that showed was some nerve inflammation. This is also due to my connective tissue disease. I will be starting physical therapy for that tomorrow. Hopefully, relief will come easy with this ailment.
In the meantime, I continue to enjoy the time I have with my family. My son just finished his spring soccer season. I must say, seeing six year olds navigate their way through a soccer game is some of the best entertainment. The pure joy and innocence of the children. It keeps you grounded and reminds you what life is really about. I have also come to terms with the idea that being a long distance runner is no longer in the cards for me so I have taken to enjoying long walks with our dogs, Roxy a 2 year old hound dog and Chewy a 9 1/2 year old chiweenie. Every morning I take them out for an hour or so and we enjoy the spring sunrise. God is amazing when you take a moment to look around and see all the beauty he has created.
Most recently I had follow up appointments with a few of my doctors. Most important would have to be the gastroenterologist. As many of my readers know, I have been dealing with numerous digestive issues for several years. This past year has been by far the most difficult. I have been on treatment for pernicious anemia, celiac disease, as well as chronic inflammatory bowel disease but I have still been plagued with symptoms. My doctor decided to order a gastric emptying study. I assumed this would come back with nothing because the majority of my pain and discomfort are in my lower abdomen. Out of sheer desperation for relief and lack of motivation to argue, I agreed to the test.
The next day I went to our local hospital, fasting. I was feed one radio-active scrambled egg. I was laid on a table, and x-rays were taking every minute for the next 90 minutes to follow the egg through my stomach. 2 weeks later, I am laying in bed with my husband as we are both sick from "the crud" (sinus infection from hell) and my phone rings. The nurse from my GI tells me the study came back abnormal. My stomach is functioning at less than 50%. "That's not good" she says.
Turns out, I now have been diagnosed with gastroparesis. Literally, my stomach is paralyzed. Now, this is a common complication of diabetics, which I am. The interesting part about it is, I have complained of these symptoms since I was pregnant with my son who is now 6. I have been told over and over that it sounded like I may have gastroparesis, but that only happens after decades of uncontrolled high blood sugars. So, not one doctor ever tested for it. After some research, I learn now that it is also a complication of patients with connective tissue disease, which I also have. Ggrreeaatt!
I have been on a new medication, Erythromycin, to treat this for about 5 days. I have to say I am showing signs of improvement. I will not lie. I do not enjoy this. I am not looking forward to my future. I am 29 years old and, at this point, I am completely overwhelmed with the amount of health issues I have to juggle and balance everyday.
To add to that, I have had a pain in my outer right thigh for several months. I have an insulin pump that is constantly attached to my hip so initially I thought I was rubbing my thigh with it every time I would go to the bathroom or change clothes. I ignored the pain and tried to be more conscious of how rough I was on my body. The pain never ceased and a lump started to appear. I had an MRI done. Thankfully, all that showed was some nerve inflammation. This is also due to my connective tissue disease. I will be starting physical therapy for that tomorrow. Hopefully, relief will come easy with this ailment.
In the meantime, I continue to enjoy the time I have with my family. My son just finished his spring soccer season. I must say, seeing six year olds navigate their way through a soccer game is some of the best entertainment. The pure joy and innocence of the children. It keeps you grounded and reminds you what life is really about. I have also come to terms with the idea that being a long distance runner is no longer in the cards for me so I have taken to enjoying long walks with our dogs, Roxy a 2 year old hound dog and Chewy a 9 1/2 year old chiweenie. Every morning I take them out for an hour or so and we enjoy the spring sunrise. God is amazing when you take a moment to look around and see all the beauty he has created.
Wednesday, October 12, 2011
Moments of Weakness
The month of October has hit me like a ton of bricks. I knew the 5 weeks following my first gastroenterologist appointment would be difficult, but I never imagined it would be this hard. For the past several months these digestive issues have only worsened. They are at a point where they affect every aspect of my day every day. There was about 6 or 7 days at the end of September that I was blessed with some relief, but the fear was never far behind. Testing will be done (hopefully) by the end of October so I was prepared for no relief until thereafter.
In recent posts I have talked about my primary care doctor showing more signs of concern. She is a bulldog, and I love that about her. She does not want to leave any stone unturned. In addition to the 4 tests the GI set up for me, my primary added a few additional scans. At first thought, I was pleased. There have been some doctors who tested for one thing, and when nothing was uncovered they would excuse the symptoms. That usually only created a more devastating realization later. So, I am glad my current primary is more thorough.
To put this in perspective for you I will give you a glimpse of my schedule of appointments. (Because these are GI issues I will leave out details to save my own pride) I met with my GI doc on September 16th. He scheduled a test for September 22 as well as October 24. Both of these are out of town and fasting. (Fasting is a Type I diabetics worst enemy) In addition to these tests I have to have blood work and samples dropped off around October 16. My primary decided I needed two additional tests. I was scheduled for October 10 & 12 for these. Again, both fasting. These are all scans of some sort, not blood work so the fasting is not immediately resolved.
I dealt with the appointment on Sept 22 with the help of some amazing friends. I left that appointment feeling like I could conquer this. I thought, "the next five weeks of testing won't be so bad, and at least I'll have an answer soon." Boy, was I wrong. I fasted after a rough weekend for the appointment on October 10. I get to the office and find out the machine went out on the prior patient. "We are not sure how long it will take to fix. If you want to go home we can call you as soon as it's up. It could take all day." This was at 9 in the morning. I declined and reluctantly rescheduled the appointment for October 14th (another day of fasting).
This morning I woke up fasting for a scan that was scheduled for 1pm. That, in itself, is difficult for a healthy individual. While I was showering and mentally preparing to get through this day, my phone rang. The gentleman wants to push my appointment out another hour. Apologetically he explains, "they completely overloaded me today, I just can't do it sooner. Unless, you'd like to reschedule?" In my head I am thinking, "It would've been easier if this had been earlier in the morning, but the thought of ruining another day with fasting is too much." So, here I am waiting an additional hour to go to this scan. I was also told by the nice gentleman to bring an iPod or something because the scan takes about an hour and a half to two hours. Great! Two more hours with no food.
I know it sounds like an oxymoron for me to complain about having to fast when I already struggle eating to begin with. It would be nice if I could go about my days with no food to avoid the GI symptoms, but I am diabetic. Fasting only adds to blood sugar issues. Also, I am still losing weight. I am pretty sure fasting is not on the recommendation list for better nutrition. Bottom line of it all, my life is being dictated by my symptoms and appointments.
I feel completely out of control. I do try to be as positive as possible at all times for the sanity of my family as well as myself. There are so many factors I have no control over, I have to let those go. The problem I am having now is, these uncontrollable factors are affecting my life far too much. They talk about depression being severe enough to treat if it starts affecting your daily life. Similar comments have been made about addictions. If they are affecting your daily routine and responsibilities, they need to be addressed. What do I do when tests, appointments, and symptoms are so severe I no longer feel like my days are my own. I can barely schedule anything of my own choosing in the midst of all of this. Add to that my husband and son who need me. I would rather spend a day doing homework and running from practice to practice for my 5 year old than spending the day at a doctor's office while his aunt takes on my son's schedule.
Everything in moderation is something I hold dear to my heart. I am allowing this anger and frustration to flow at this point. I am allowed to be less than perfect. Today I chose to let go. Although I know there are policies, procedures, schedules, rules, regulations, etc. that affect how any business is run as well as health care facilities, I believe this is a huge short coming.
It is now at a place where I am no longer looked at as a person. I am a number or a name on a schedule. The symptoms, pain, suffering, daily struggles are non-existent to these workers. I understand that completely with my short career in health care. You have to separate yourself in order to do your job properly. You must find a balance. These are still patients...PEOPLE with families and lives outside of this scan or that test. It is not a haircut we can continually reschedule or a nail appointment that needs to be pushed back.
I feel like there is no one out there that relates to me. I feel like an outsider in my own world. How do I work through these issues without sounding over dramatic and selfish? Who do I talk to about this stuff without feeling like they are just humoring me? Where do I turn?
I pray. I talk to my husband and family. I stay in the present moment when I am with my son as much as I can. I continue to do things I enjoy to have a sense of self in this mess. I am thankful for the blessings in my life. I try to learn from ever difficult situation I face. At this moment in time I feel like screaming from the Empire State Building, "I learned the lessons. I am trying to do the best I can. Please, give me a break!!" I just need some time.
I wish every minute of everyday that someone out there will have the answer. Maybe some doctor or some researcher has seen something similar to my case and has an approach that may make my quality of life a little easier. I want my focus to be on my son and my family more than my obligations created by my health. Sometimes it is good to really feel what you are feeling!
Then you stop.....Live for today, pray for tomorrow.
In recent posts I have talked about my primary care doctor showing more signs of concern. She is a bulldog, and I love that about her. She does not want to leave any stone unturned. In addition to the 4 tests the GI set up for me, my primary added a few additional scans. At first thought, I was pleased. There have been some doctors who tested for one thing, and when nothing was uncovered they would excuse the symptoms. That usually only created a more devastating realization later. So, I am glad my current primary is more thorough.
To put this in perspective for you I will give you a glimpse of my schedule of appointments. (Because these are GI issues I will leave out details to save my own pride) I met with my GI doc on September 16th. He scheduled a test for September 22 as well as October 24. Both of these are out of town and fasting. (Fasting is a Type I diabetics worst enemy) In addition to these tests I have to have blood work and samples dropped off around October 16. My primary decided I needed two additional tests. I was scheduled for October 10 & 12 for these. Again, both fasting. These are all scans of some sort, not blood work so the fasting is not immediately resolved.
I dealt with the appointment on Sept 22 with the help of some amazing friends. I left that appointment feeling like I could conquer this. I thought, "the next five weeks of testing won't be so bad, and at least I'll have an answer soon." Boy, was I wrong. I fasted after a rough weekend for the appointment on October 10. I get to the office and find out the machine went out on the prior patient. "We are not sure how long it will take to fix. If you want to go home we can call you as soon as it's up. It could take all day." This was at 9 in the morning. I declined and reluctantly rescheduled the appointment for October 14th (another day of fasting).
This morning I woke up fasting for a scan that was scheduled for 1pm. That, in itself, is difficult for a healthy individual. While I was showering and mentally preparing to get through this day, my phone rang. The gentleman wants to push my appointment out another hour. Apologetically he explains, "they completely overloaded me today, I just can't do it sooner. Unless, you'd like to reschedule?" In my head I am thinking, "It would've been easier if this had been earlier in the morning, but the thought of ruining another day with fasting is too much." So, here I am waiting an additional hour to go to this scan. I was also told by the nice gentleman to bring an iPod or something because the scan takes about an hour and a half to two hours. Great! Two more hours with no food.
I know it sounds like an oxymoron for me to complain about having to fast when I already struggle eating to begin with. It would be nice if I could go about my days with no food to avoid the GI symptoms, but I am diabetic. Fasting only adds to blood sugar issues. Also, I am still losing weight. I am pretty sure fasting is not on the recommendation list for better nutrition. Bottom line of it all, my life is being dictated by my symptoms and appointments.
I feel completely out of control. I do try to be as positive as possible at all times for the sanity of my family as well as myself. There are so many factors I have no control over, I have to let those go. The problem I am having now is, these uncontrollable factors are affecting my life far too much. They talk about depression being severe enough to treat if it starts affecting your daily life. Similar comments have been made about addictions. If they are affecting your daily routine and responsibilities, they need to be addressed. What do I do when tests, appointments, and symptoms are so severe I no longer feel like my days are my own. I can barely schedule anything of my own choosing in the midst of all of this. Add to that my husband and son who need me. I would rather spend a day doing homework and running from practice to practice for my 5 year old than spending the day at a doctor's office while his aunt takes on my son's schedule.
Everything in moderation is something I hold dear to my heart. I am allowing this anger and frustration to flow at this point. I am allowed to be less than perfect. Today I chose to let go. Although I know there are policies, procedures, schedules, rules, regulations, etc. that affect how any business is run as well as health care facilities, I believe this is a huge short coming.
It is now at a place where I am no longer looked at as a person. I am a number or a name on a schedule. The symptoms, pain, suffering, daily struggles are non-existent to these workers. I understand that completely with my short career in health care. You have to separate yourself in order to do your job properly. You must find a balance. These are still patients...PEOPLE with families and lives outside of this scan or that test. It is not a haircut we can continually reschedule or a nail appointment that needs to be pushed back.
I feel like there is no one out there that relates to me. I feel like an outsider in my own world. How do I work through these issues without sounding over dramatic and selfish? Who do I talk to about this stuff without feeling like they are just humoring me? Where do I turn?
I pray. I talk to my husband and family. I stay in the present moment when I am with my son as much as I can. I continue to do things I enjoy to have a sense of self in this mess. I am thankful for the blessings in my life. I try to learn from ever difficult situation I face. At this moment in time I feel like screaming from the Empire State Building, "I learned the lessons. I am trying to do the best I can. Please, give me a break!!" I just need some time.
I wish every minute of everyday that someone out there will have the answer. Maybe some doctor or some researcher has seen something similar to my case and has an approach that may make my quality of life a little easier. I want my focus to be on my son and my family more than my obligations created by my health. Sometimes it is good to really feel what you are feeling!
Then you stop.....Live for today, pray for tomorrow.
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