Acceptance is Key

  Today is 7 days out from my surgery to replace the battery in my gastric stimulator. It was such a difficult decision to make, but I have not questioned it since. I know I made the best decision for my lifestyle. I needed to gain better control of my brittle Type I diabetes while still being able to stay active. I was certain I was doing the right thing, but was waiting to feel that "buyers' remorse" type regret. I was afraid I would wake up from surgery and start thinking of the "shoulda done"s. That has not happened once which is such a relief!

  The dynamic of gastroparesis and diabetes is that of a toxic relationship. One entity trying to dominate the other. I have always been active. I was taught healthy eating at a young age and that just got more intense once I was diagnosed with diabetes. As a Type I we are able to eat like anyone else, we just give ourselves insulin to cover the carbohydrates in food. I began to limit simple sugars like candy once I was diagnosed, but we all should do that anyway. When being educated on insulin dosing and carb counting you learn there are different carbs like complex or simple. Simple carbs go through your body quickly causing a quick spike in blood sugar followed by a quick drop. Complex carbs are slow to digest so they help maintain a more even blood sugar. Think about pouring plain table sugar through a straw. It's like a pixie stick. Quick. Then think about adding crumbled oats to that table sugar and you would imagine it would disrupt the flow taking the sugar a longer amount of time to clear the straw. Same thing with your digestive system.

  Now, usually insulin starts to act within 15 minutes and continues working for about 2 hours. That would be great if you had a meal with protein and complex carbs like eggs with whole wheat toast. That would make a graph of your blood sugars look like rolling hills. If you ate Lucky Charms instead you would see the Rocky Mountains on that graph. The idea is to keep the rolling hills. So what happens when your body does not digest in the normal fashion? Mountains, valleys, hills, the works. Gastroparesis starts to win the battle over insulin.

  With gastroparesis food stays in my stomach for days. Yes, I said days. On top of that, sometimes things get pushed through by other food, sometimes it travels at a semi-normal speed, and sometimes nothing moves. Liquids are the easiest thing to move. We all know that fiber, fat, and protein slow the digestion process. Most healthy diets use them to help maintain steady blood sugars, even in non-diabetics. Typically a diabetic diet is high fiber, high protein, and good fats. Gastroparesis has limited me to 5 grams of fat per day, 10-15 grams of protein, and 10-15 grams of fiber per day. THAT IS NOTHING. Yet my stomach still is not moving food. So what does this mean?

  This means I am eating a diet that is 100% against the diabetic diet or the "Lauren" diet I used to love. I am eating only simple sugars with very little protein or fiber. But remember, my belly is not moving or digesting. I cannot give myself insulin right before I eat. It usually needs to be after because my body doesn't even begin to absorb the sugar right away. Usually 1-2 hours after I give myself insulin for a meal my numbers are fairly good. But wait an hour beyond that, then the next and suddenly my blood sugar is through the roof. Why? Well, because I gave myself insulin for the meal I was eating, not for the food that is in my belly. When food moves from the stomach to the small intestine, that is where most of the sugar is absorbed. Without knowing exactly what is moving from one organ to the next it is incredibly hard to predict what may be absorbed. All I know is what I just ate. Sound confusing? IT IS! And the worst part, no doctor can give you advice. They can monitor you, but they cannot tell you how to predict something or how to safely prevent more damage. Gut motility disorders are not well understood.

  When the battery went out on the gastric stimulator I had no idea. What did start to happen, and should have been my first clue, was my blood sugar would drop way too low after eating then spike way too high 3-4 hours later, remaining high for hours. If I tried to correct, it would plummet. I thought I was stressed out and adrenaline was causing some wacky things. Not the case. I was not digesting, moving, or absorbing properly. I could tell I was struggling to digest because the easiest things were starting to feel like bricks in my belly. I have said this before, but it feels like I eat an entire fast food meal plus a large pizza all by myself. I almost feel the fullness all the way in my throat. I don't even remember what it feels like to eat a regular meal and just feel satisfied. I always feel deprived, yet always feel incredibly full.

  As you can imagine, this wears on my emotions. Food is such an integral part of our culture. We have feasts for big holidays and cook-outs or gatherings to celebrate anything we can imagine. We meet up for lunch, dinner, or drinks just to catch up with a friend. Food is everywhere. As this disease progresses, and it is happening faster as I age, I am having to limit more and more while simplifying more and more. I spent hours on the computer last night looking up recipe ideas and anything else to help me feel more "normal". Of course, this is not the first time I have done this kind of research. Since so little is understood about motility disorders there is little to be found.

  I have discovered little tricks along the way. One of my tricks is exercise. More important is exercise involving twisting or crunching always involving the use of gravity to help break the food down while shaking it through my belly into the small intestine. Walking, yoga, pilates and similar exercises are my go to. The problem is I am having to do these things more than I want now. Most days I end up working out 2-3 times per day for at least 30 minutes. As much as I like to be active I also want to be lazy. On top of that, the exercise burns a lot of calories I just tried to consume. So I eat then exercise or just not eat at all. Neither of those options are good, mentally or physically. 

  I spent a lot of last night in tears. Then my ninja girl comes out and says "I will conquer this." Then I get mad. And the cycle often continues, but it ALWAYS passes. I just explained to my husband that I am envious of those of you who can eat regularly. I don't think I remember what a normal gut feels like. I want to run and jump and swim and hike. But I can't. Not just because of the gastroparesis,  but the other diseases limit me also. I want to be able to eat at a restaurant or leave the house without having to pack my own food. I miss baked goods so much. It is this all encompassing deprivation.

  My positive self comes out when I start to spiral like this. I have options. I spent today making chicken noodle soup, chicken with rice soup, and peeled and sliced potatoes I bake with a tiny amount of olive oil. My parents generously drove 2 hours to go to Whole Foods and grab me some unsweetened peanut butter and dairy free yogurt. I have plenty of frozen fruit I can use to make smoothies. I can tolerate eggs now that the battery has been replaced. Unfortunately, that is the extent of the excitement. Notice there is nothing crunchy on this list. Also, the soups do not have any vegetables because I cannot tolerate them. No beef or pork. No spices. No condiments really. So, I have options but not many. A human being instinctively needs to chomp. Eating pureed foods, soups, and baked potatoes does not give you that crunch. It seems like even if I do all the right things I will still feel deprived. It is overwhelming and unfair. Who said life was fair, right?

  The one tool I hang on to is gratitude. I do thank my body for allowing me to wake up everyday. I thank my body for the ability to move. I am proud of myself for continuing to fight this battle. I am proud of myself for finding something to smile or laugh about EVERYDAY. I hold onto my intention for every action. Sometimes my intention for a morning workout is simply to ground myself and not focus on the benefits it is having on the disease I fight. Sometimes my intention for an afternoon unplugged is to be present with my son. Most days my intention is to be me. I have so much to be thankful for. I complain. I whine. But I know my struggles are minuscule compared to so many others. As I enter this new chapter my intention is to accept. One of the biggest causes for depression is not accepting your challenges. I will learn and adapt as the diseases progress. I remind myself that I have faced similar challenges in the past and made it through. There is always a rainbow at the end of a storm. Usually that rainbow is that the challenge made me a better person. This too will make me stronger. I may desire more than I have, but when I look at how strong this has all made me I know the grass is not always greener on the other side.

Osteoporosis Won't Break Me

  Osteoporosis. That is an interesting word to hear at 37 years old. That's what I got. I had to do a bone density scan last week. Not just because my broken foot is taking its sweet time to heal, but I am also very thin, malnourished, and I have ovarian failure. Yup. You read that right too. Ovarian failure. These are two things someone in their thirties rarely has to think about. This is now what I face. Although a little frightening, I see this challenge as a learning opportunity. It isn't a great deal of fun for a man to read about ovaries so I will keep that short and simple.

  For years I have had irregular periods. For a few years I was treated for ovarian cysts and that worked out great. When we moved from a metropolitan area in Texas to a rural area of New Mexico I kind of brushed it off not wanting to find an OB-GYN because, let's face it, who does? After 2 years and a serious lack of periods I finally broke down. I would love not to have one, but I am smart enough to know it is not good to not have them. There is not a chance of pregnancy. I had my tubes tied back in 2011 due to my fragile health. I found an OB-GYN. After a detailed exam and discussion she knew things might be more complicated. She ran some blood work and called back a few weeks later to notify me that I have ovarian failure. What's that?

  Well, I had been warned since my early thirties that many auto-immune diseases cause early menopause. My assumption was that may be what is causing me to be irregular. I have never heard of ovarian failure.  The Mayo Clinic refers to it as ovarian insufficiency. That word again, "insufficiency". Seems to be one of my running themes. Basically, my ovaries are not producing enough estrogen and/or eggs. This is not normal for women under 40. It is different from menopause in that women with ovarian failure or insufficiency can have periods on and off and possibly even get pregnant during this time (not me). Women who have premature menopause  stop having periods completely. Glad we got that sorted out. So the next question is what do we do about that?

  The doctor talked about hormone therapy and a few other things. All of which I listened to but barely understood. This is not in my wheel house and I have never even researched them. I am such an information junkie, I am usually ahead of the curve. She then explained she wanted to consult with an endocrinologist (specializes in hormone and hormone glands) as well as my primary care physician to go over options for any possible treatment. Her concern, of course, was starting something that may be dangerous considering my complex medical history. She heard I broke some bones in my foot so she decided to have a bone density scan done.

  I had to go to the local hospital. All diagnostic imaging is done there in our small town. That is a scary experience during COVID and I have been there several times since I broke my foot for different scans. A side note to this is the woman who checked me in was not wearing a mask. It is state mandated and it is a hospital. That made me uncomfortable. The scan took hardly any time. She did have to take my official height. I am proud to say I am officially 5'3". I am the tall one in my family haha Due to the pandemic, results get to the doctors faster. Radiologists are not having to do as much since healthcare is focused on necessity right now. The very next day the OB-GYN called to let me know I have osteoporosis.

  Now that was not what I was expecting. I am pretty good at being prepared for a new diagnosis. My gut instincts are good at knowing even before I consciously know myself.  Not this time. Because it is not something that was on my radar and no one in my family has really talked about it, I honestly had no concrete idea on what the different bone diseases/disorders meant. She explained and I listened, but I can't relay what she said. I don't think it registered at the time. Again, she wanted to consult with my endo and primary care doctor before starting any treatment, but some treatment is needed. I do take a calcium supplement and vitamin D because I do not absorb them naturally. She believes some hormone treatment may be necessary at this point.

  Osteoporosis literally means porous bone. Bones do have a blood supply. They also have two very important cells called osteoblasts and osteoclasts. The osteoblasts break bones down. Osteoclasts rebuild. Diabetics already produce more osteoblasts than osteoclasts which is why it takes longer for our bones to heal along with poor circulation. In osteoporosis there are also more osteoblasts than osteoclasts causing the body to lose more bone than it can reproduce. This makes the bones porous and brittle. Sometimes something as little as a sneeze or minor bump can cause a bone to break. The main concerns are the spine, hips, and wrists. I have read that even just sitting there a vertebrae may crumble. How do you protect yourself when you are a 37 year old mother?

  Strength training, impact exercises, and nutrition. So, we know I can only do so much nutrition wise. I eat as healthy as I can within my limitations. My body does not absorb all nutrients. I take supplements to help, but it is not a fix all. I am limited in protein intake due to my gastroparesis. Most of us know, protein is crucial for repair and development of the body. That one gets me. I have always exercised. In the past ten years it has really only consisted of long walks and yoga. Since my broken foot I have had to become more creative. I do a lot of floor or chair work which really strengthens your arms, abs, butt, hips, and back. Little did I know, that strength training is exactly what is necessary for osteoporosis. Score one for Lauren. The impact exercises will come in due time. They are things like walking, running, and jumping. But at least I know. Now, I can be sure to do a variety of exercises even beyond my foot injury. 

  I have mentioned this before, but I found some great content on YouTube for "hurt foot" workouts. Donovan Green (Dr. Oz's trainer) and Caroline Jordan are my two favorites. They make chair cardio videos. Caroline also makes floor barre and total body non-weight bearing workouts. I have come to really enjoy them. I used to be a long distance runner and basketball player. These workouts get me to that level of intensity. Who would've thought? Walking and yoga are peaceful, but nothing beats a runners' high. I am strengthening muscles I didn't know I had yet are so crucial to preventing injury. They have even gotten my shoulder feeling great. I had a labral tear last August and have struggled through physical therapy and more to rehab. These exercises really strengthen your posture muscles in turn strengthening your shoulders. I highly suggest you try it before you knock it, especially during this pandemic. It will reduce anxiety, help you strengthen, possibly lose weight (if needed), and as my son puts it, "It's somethin' to do". I recruited him for my evening routines. It has changed my life for the better.

  That is what is so cool. We all say, "there is always a rainbow at the end of a storm" or "the sun will come out tomorrow" yet it is difficult to really internalize. We also know there is power in positive thinking. Well, the shoulder injury and then the foot injury seemed horrible, but have now proven to actually be a blessing. They have made me really slow down. I tend to push myself beyond my limits then pay for it. These injuries have reset my mind reminding me to not push so hard. They also brought me to new exercises. I learned I really enjoy things I normally passed up. That has made me rethink trying other new things in other aspects of my life, These two trainers are incredible at educating while not judging. They are motivational. I have learned to be compassionate with myself. I am constantly reminded to be grateful for how incredible the human body is. It is one of the rare things that can heal and get stronger. I am better at pushing away negativity. I am better at focusing on my health. That helps all else fall in to place. 

  As I sit here with my foot propped up and no end in sight, I do feel thankful. I am excited for the day I can walk again because that just means I can add more to my arsenal. I will never get bored with the variety of exercises I can do. I may not be competing anymore, but I think I am stronger than when I was. I talk about exercise so much because I love it. Movement is medicine. Having a bad day> Exercise and get endorphines. Feeling tired? Exercise and get endorphines. Bored? Don't eat. Get up and move. The endorphine rush is real. The best natural remedy on earth. As long as you are doing it right and for the right reasons, there are only good side effects. Even as sick as I am, I think I was born with far too much energy and I have to get it out some way. 

So, welcome osteoporosis and ovarian failure. I am here to fight and win. 

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.

Mountains Climbed

Nine Months has gone by since my new life began. I have proudly called it my second birthday many times and truly mean it. July 31, 2013 I got an Enterra gastric stimulator implanted. A device that has forever changed my life. I had been suffering a severe case of gastroparesis that was not responding to treatment. I went from a slim frame to a skeletal frame, losing more than 30 total pounds throughout the course of the disease. It was recommended for the umpteenth time that I go to Johns Hopkins University Medical Center. After a consultation in my hometown for a feeding tube determined my comorbidities would be exacerbated, even life threatening with forced nutrition, the surgeon had an 'out-of-the-box' idea I had never heard. Leaving that appointment with little information other than an "We'll be in touch after some research..." I was devastated. I had been weakening and weakening physically, but more so emotionally. A week later, a doctor had been chosen in Dallas, TX they were sure could help. But I also had to go to Johns Hopkins in a last ditch effort to save my life.


Within a month of the consultation with the feeding tube surgeon, we were on our way to Dallas to meet this amazing doctor. That very first appointment, he made a clear decision that my only hope was the gastric stimulator and I had plenty of history to show I was a great candidate. Not only do the physical ailments have to be there for medical devices such as these, but mental state plays a big roll. They do not want to implant a device or even attach any device to a patient who is not going to follow what is necessary for the device to work. For example, an insulin pump patient (which I also have due to Type I Diabetes) goes through the same mental test, insuring the patient has the right mindset to have a device attached to them 24 hours a day. You'd be amazed at what these things effect in daily life. He needed to be sure I understood everything. The device is implanted in a subcutaneous pouch in the abdomen (made by the surgeon) and leads attached to the device are guided through the abdominal muscles into the lining of the stomach. Recovery time and full effectiveness usually take about a year. You do see the device bulge out under the skin and you have to learn to adjust you movements accordingly. The battery lasts about five to ten years. At that time it is determined if a new one can/should be implanted. While explaining this he monitored my reaction and comprehension to determine if I was a candidate. Thank God it turned out positively for me. He then needed ammunition for the insurance to agree with his findings.


This time last year I was going through some brutal testing to prove to my insurance company why I was a candidate for such rare treatment. It actually isn't even considered treatment. The FDA classifies it as a humanitarian device, which simply means it improves quality of life but does not treat or correct a problem. That is why so much is needed for the insurance companies to even consider it. I was taken off my motility medications as well as my digestive enzymes and ulcer preventative medication. I take digestive enzymes because my body absolutely does not produce them. The ulcer preventative is due to Pernicious Anemia in which the inner lining of my stomach is eaten away by my immune system as well as having an alkaline environment as opposed to a normal pH level in the stomach or an acidic much like a GERD patient may have. The alkaline state is just as dangerous, if not more, than an acidic state in the stomach. I also have Celiac Disease in which the immune system is attacking the lining of the small intestine when gluten is in your system. That all being said, you can imagine I was incredibly uncomfortable. The process took about two weeks. I had endoscopies, gastric emptying studies, MRIs, CT scans, and I even swallowed a pill with a camera and other scanning properties that traveled throughout my digestive system giving a better look at what was going on inside. That in itself was the most difficult yet interesting one of them all. I was finally told the doctor had enough ammo and I was free to return home, but it was also necessary to be seen at Johns Hopkins to solidify it all and be sure every stone had been uncovered.


Once I returned home from Texas, I had six days to prepare for my trip to the scariest place I had ever gone. I had been seen at the Mayo Clinic in 2008 following through to the beginning of 2009 (not continuous). I was terrified then. Now to be sent to an equivalent or an even more progressive facility really puts mortality in front of your face. Luckily, I had my husband and my son along as well as an amazing aunt and cousin who flew out to Baltimore just to support me. That will never be forgotten- all the support. My sister even set up a donation account to help with travel and medical expenses. I was blown away by all the love. A quick trip into the doctor's office at Johns Hopkins lead to a few minor in-office tests all coming out as expected. This gave the doctor the ok to agree with the opinion of the previous two doctors I had seen regarding the need for the gastric stimulator; if for nothing else but the increased caloric allotment. The only stipulation, we had to move to the Dallas/ Fort Worth area to be closely monitored for life. I had never lived outside of New Mexico other than the two years of back and forth to California when my dad was alive. A move that was absolutely not planned had to be made within six weeks.


A feat I thought was impossible slowly began to play itself out. Years and years of pain and suffering with little to no answers in terms of relief- just diagnosis after diagnosis with treatments but relief was hardly part of the equation. My prayers for respite had been answered, loudly. But as those moments of change began, all I could think was the world was moving too quickly. Again, with the incredible support of my sister and extended family we found a place to live that fit all of our requirements. With the help of my parents we were packed and ready to go within those six weeks. My husband had to stay behind to continue working until logistics got worked out. Thankfully, he was only there three weeks before he could join us. He made his move two days before the beginning of this new life. All the while I was wasting away even quicker because life had gotten away from me. I couldn't believe it all fell into place so easily yet so inconceivably.


Entering the hospital, I was down to 80 such pounds. I did not ask the exact number. I had to fast as you normally do with most procedures involving anesthesia. I have had to fast so much in recent years, I will be glad to never see lemon-lime soda or Gatorade as well as lemon or lime Jello. The next day, all I remember was being excited to finally get the stimulator and then, waking up. I woke up in incredible pain as if a fire had been started in my abdomen and nothing was there to stop it. I am not talking heartburn type fire, I am talking roasting-chestnuts and accidently falling in the fire. A nurse immediately came to the rescue with pain relief pushed into my IV. My husband was allowed to see me shortly after that and I remember him asking how I felt. I said, "Like I have been hit by a truck....but a good truck!" He must have passed that along because that phrase has followed me since and I love it.


Those first few days were difficult. I was expecting or strongly hoping I would be able to eat right away. I actually could only handle smoothies but quickly moved on to tiny doses of pizza and French fries. What else would you chose after not being able to eat solid food for so long? I thought life was going to be better, but that I was going to be weakened and forever changed by the surgery. The timeline was given to me, a year towards recovery and full effectiveness. As the year passes, I have reached many milestones, but in the back of my mind every month I think "Look what this has done for you. This is the best it can be." I am proven wrong time and time again.


I recently have reached milestones I have dreamed about for years. You may get tired of blog post after post talking about the unthinkables I have reached, but that's the reality of my journey. And isn't that incredible? For the first time in two to three years I was able to put jeans on with little to no discomfort this past weekend. Previously the waistband and button that have no give would only cause pain to my constantly full and distended belly. Then, in the past nine months, I would try jeans on every now and then, but it would still cause pain, only now it was the device sight and the belly discomfort. I have saved my favorite pairs of jeans out of hope of one day wearing them. As I was doing laundry on Saturday they caught my eye while putting away my normal attire of yoga pants. I stopped in my tracks and decided to try them on. I put on a loose pair first and they felt alright so I moved on to my favorite pair. They felt fine. I squatted, I bent, I twisted, I sat...and no usual pain.

The pain at the site had now turned into just slight discomfort. That's normal with jeans considering none of us ever find the perfect fit. I danced around with my son for a little while and the jeans still felt alright. I made him take a picture out of sheer glee. I have not challenged myself to wearing them all day, but I will get there. I felt so accomplished, my mind has been reeling about what else I may be able to do. This morning a challenge was calling my name.


I usually rotate walking and yoga for exercise about five to six times a week. It's a great time for centering myself. My walks includes my little dog Chewy. He is a Dachshund/ Chihuahua mix, that's what I mean by little. This morning I took him for our usual walk at a walking trail at the college across the street. It's a one mile loop and we normally do two. Today, as I normally do, I saw a few joggers along the loop. I used to be a long distance runner so that itch is always there. I haven't been able to run for at least two and a half years or more. Today I thought "could I run a mile? I could try....but stop if it doesn't feel right. Stop." So, I had this little discussion in my head the whole time I was on my walk. Chewy couldn't run with me for certain so I walked him home. I told my husband what I was going to try and he was reluctantly excited. I went across that street, I got on that path, and I ran. I thought I would surely wimp out a few steps in, but my body just fell into natural motion. I didn't get out of breath. I didn't push myself. I just ran a mile. I felt ecstatic. I walked home feeling more powerful and accomplished than I had in years all the while knowing this incredible device is helping me climb mountains.


Not only have I been able to do these things; eat more solid food, go to restaurants, wear jeans, run again, even build strength with yoga not just maintain the little I had; but my heart and mind have grown exponentially too. Years and years of day in and day out malaise is so exhausting. Imagine waking up feeling like you have the flu everyday, but you still have the same responsibilities and expectations on you as any other person in the world. You put on your best face and muddle through the best you can. Every now and then a burst of energy comes and, a phenomenon described by doctors, you go into this manic state, trying to accomplish as much as you can while the energy is there. So, I may be glued to the bed one day and the next day a little feeling of increased energy has me rushing to the store, cleaning the bathroom, washing dishes, vacuuming, etc. until the energy fades. You crash and burn then pay for the overexertion for a few days thereafter. Now, I often still feel puny, achy, nauseated, flu-like but it has lightened up enough for me to notice. I sleep through the night sometimes feeling refreshed in the morning. All in all, the humanitarian device has done exactly what it is intended to do.


The thought I'd like to spread to the world is open your eyes to the world, don't focus on the daily grind. When I stop to write my blog or in my journal at night, I am often tired and in need of a release. As I go about my writings I start to uncover all the little jewels I missed throughout the day, the week, the month. This makes me turn to my son and see how far he has come. Not a day has gone by with him on this earth, that I have not seen a miracle up close and personal. But to know he has lived his entire life with a sick mother only speaks volumes to who he is today. At such a young age he has more compassion, wisdom, and intelligence than I see in the average adult. He challenges me intellectually on a daily basis. Sometimes I get so wrapped up in responsibilities I forget to slow down to embrace him fully. When I open my eyes, I see the glory of the world. I see how amazing he is. I see how beautiful the trees and the sky are. I feel all the improvements in my body. I see lights at the end of the tunnels when physical ailments overcome me. These mountains I have climbed will be in clear view for years to come.


I will actively continue and strive to keep my eyes wide open. The happiness I have felt these past few weeks is close to the elation I felt the day my son was born and the day I got married. How can the unimaginable continue to happen only to remind you how grand life can be?

Lesson Learned- Competitive Bidding Program

Moving is always an adventure. Most of us loathe the process, but enjoy the change. Moving to a new state entirely for the first time in your life while you are ill and receiving new technology in treatment is more than an adventure. I am but a sad New Mexican who is ignorant to how the world outside of New Mexico works. The Federal part of our wonderful country is a layman's understanding as well as the history for myself. But New Mexico is like a small town that runs at a very low speed and is off the beaten track.


Along this first year in Texas, I have been through my share of awakenings. In the short five or six weeks I had before having my gastric stimulator implanted, I had to move in, familiarize myself with the area, get address changes for everything under the sun, switch my son's insurance, and do all the preliminary stuff for the surgery. I thought all that was hard. I thought all I had to do is get acquainted with new doctors and get a new driver's license. Boy, was I wrong.


Doctor's alone have kept me on my toes. Of course there are several and frequent appointments for my stimulator. The first year of recovery and calibrations is tough. I also have had to establish with a neurologist, an endocrinologist, a dermatologist, and a rheumatologist. If you have read some of my previous posts you will know that a rheumatologist is no longer necessary as the symptoms seem to be a latent version of adrenal insufficiency that has been difficult to pinpoint. I am still needing a urologist for interstitial cystitis and an ophthalmologist, but the task seems so daunting at the moment I have procrastinated greatly. Unfortunately, it seems as though my primary care doctor needs to be replaced. That's a topic for another post, but let's just say she's not the best with being thorough or with her bedside manner.


I am on Medicare so none of this is easy. Less doctors in Texas take Medicare so it was like finding a needle in a haystack just for the doctors and services I need. I have changed prescription drug plans three times. Recently, I ran into a new road block. This story has plenty of twists and turns. Are you ready?


Back in early November, an 18-wheeler somehow came into our apartment complex and smashed our mail center. It is just a gazebo with the mail boxes all around. Supposedly his GPS took him the wrong way, but any logical person would know not to turn into an apartment complex in an 18-wheeler. Needless to say, every one's mail was in there. The apartment management had no real answers for us other than, "You can now pick your mail up at the post office until the insurance can get us a new mail center." What about the mail that was in our boxes at the time? A mystery yet to be solved. Here we are at the beginning of April and we are still picking up our mail at the post office.


I had been running low on pump supplies for a few weeks now and I had not received any word about my automatic shipments like I usually do. Medicare makes you go through a third-party supplier and they usually send me an email the day it is shipped. I finally called them. I was informed that Medicare is no longer contracted with them. They have switched to a "Competitive Bidders' Market" in our area. I was advised to call Medicare to move forward because I should have received a notice back in October or November. Do you see where this is going?


Just a few months earlier, I had been working with my doctor's office on getting a new pump supply prescription because mine had expired. We began the process in late September, but the back and forth was finally done with in November. I received everything I needed. Now, switching over to a new supplier meant getting a new prescription. I knew this would be a potentially long process, but gritted my teeth and pushed through, step by step getting increasingly more frustrated. I couldn't get my old supplier to send out complimentary supplies to get me through. They could not transfer the old prescription; don't ask me why because they gave me an answer that makes absolutely no sense as most things in the medical field do. The manufacturer somehow had no record of me since 2011. Well Medtronic, I bought a new pump in 2012 that you sold me, I have been receiving supplies since than that the third-party gets from you, and finally I have an Enterra gastric stimulator implanted in my abdomen that you all made and registered for me eight months ago. (Everybody clap your hands for eight productive months) They also refused to send out some "hold-me-over" supplies all due to the fact that no one has a "current" prescription except the supplier who no longer supplies me. Aaahh


I start putting one foot in front of the other to begin the long process of finding a new third-party supplier. When I called Medicare they gave me three phone numbers of three different suppliers. The first two did not supply pump supplies. Check them off. The third said they did. Yay....they began the registration and started the paperwork right away to get me squared away. It took only a week of back and forth confusion this time to get the new prescription done. I finally received my supplies last Friday, and they were the wrong supplies.
It was a generic brand of supplies that claimed it works for all pump models including...and it gave a list of manufacturers and models. My model was not on the list. Next step, call the manufacturer to see if the generic is even possible. There is a high likelihood that the pieces do not fit my model and may possibly crack it. I turned back to the supplier. Suddenly, no one was available in the pump department to service my call that day so I left a message. That felt odd. I did tons of research on the Internet, because where else do you turn for honest information (haha). I kept coming across the same information the manufacturer had given me. Nothing can be done on a weekend so I tried to block it out until Monday. I did contact my NM diabetic educator to ask for supplies because no office here has them on hand. I also contacted my sister who has a similar model of pump. Both are doing what they can to help with supplies until I have this straightened out. I finally gave in and paid cash for supplies to give me a bit of a cushion. Stockpile baby, stockpile. Then I get a call saying they will not ship out supplies because I am a Medicare patient who needs to go through a third-party supplier with a prescription.


On Monday I called the third-party supplier, All American Medical, and notified them of the mistake. I was informed they do not supply my particular needs. Back to Medicare I go. I got two phone numbers for the "Competitive Bidders' Program". Surprise, surprise. These suppliers do not supply pump supplies. At this point I am thinking, "this competitive-bidding program is definitely not organized or handled well". When I was waiting on hold for the umpteenth time with Medicare, I decided to go online to see if I could pull up some names for this "Competitive Bidders' Program". Thank the Lord, I did. 17 were listed for my zip code so I went straight down the list. I called everyone of them I could and was very specific about the supplies I needed for my particular pump. About five businesses in, I found one. They only supply Medtronic pump supplies. Phew. Now, I await the aligning of the third-party and my doctor's office. This time I talked to my doctor's nurse and drilled into her what I need the prescription to say so I can leave this trouble behind as quickly as possible. By this time, I believe she feels the same.


Little by little, you learn how to navigate the world. New Mexico is not in the "Competitive Bidders' Market" so I had never dealt with this. Apparently, the program is new across the board but some states do not fall into it. After ripping my hair out, losing my cool with every single person I talked to, and spending all weekend trouble shooting with my family's help, I now know exactly what to ask when dealing with Medicare and third-party suppliers. I also know that screaming does not help a thing. As if at the ripe ol' age of 31 I didn't know that, but, ya know, long term stress can manifest an entire person you do not recognize. Luckily, the beast in me is only in view sparingly and this year I am releasing all demons so soon I can be the me I have always known....or possibly, quite possibly, a better me.
I am noticing more energy. I am noticing a more nourished look throughout my body. I am noticing a lighter heart. The volunteering, church, my son's school and teacher, and enjoying our new surroundings has really started to bring to light the me I used to know and embrace. Being so ill everyday can wear on you and most of us feel a great deal of guilt, inadequacy, and grief when going through a change like a diagnosis of a new disease along with its symptoms. Sometimes we get lost in it all and forget who we really are or think because the disease has caused limitations that somehow limits our personality or self worth. This healing process and recovery from what I have been through these past few years including the gastric stimulator implant has been a long road, but proving to be worth it. Lessons learned, wisdom gained, strength and resilience abound and a new heart and mind rise from the ashes made by the bridges of our "old" selves burned like the Phoenix.
That was a bit off track, but the lesson of "no matter how many times I think I've got it covered" i.e. my insulin pump supplies and Medicare, there is always a wrench coming in, eh hem "Competitive Bidders' Program", to teach you a new lesson. Along the way more layers of yourself are pulled back to open up a new part of you.
I certainly don't mean this post to come across like I am worse off than anyone else or that I have seen more pain than others. I know that is not the case by any stretch. I just realize everyday that I have not seen every struggle or I would know how to face them more appropriately.
Never stop learning....just try to stay level headed unlike I did.

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.

Connected

November is Diabetes Awareness Month because of this, there are many websites promoting and selling diabetes related merchandise such as jewelry, clothing, t-shirts, etc. I have mentioned previously that my sister has Type I Diabetes too. I enjoy this month because there is so much promotion for Breast Cancer Awareness (which is greatly needed and I support fully), it feels good to know people are still working on a cure for diabetes. I have always worn my diabetes as a badge of honor and will gladly talk about it if someone asks. My sister has always been more reserved about health issues, especially her own, but this month I found these bracelets we could get to show our solidarity in this battle we fight throughout life together. I was actually really pleased and thankful when I sent the link to my sister suggesting we get these bracelets and she agreed.

I have to give her credit. She lives in a completely different world than I do. In her business, health issues are seen as a weakness or risk. Her career and environment are not exactly compassionate to human pitfalls, but it is such a rewarding field and she is so passionate. They say, "If you're going to work for the rest of your life, do what you love and it won't be work." To take this back a bit, I also want to credit her for following her dreams. Like many with chronic illnesses, diabetes stopped her career path dead in its tracks. She took a minute, evaluated the situation, put her head down and kept on trudging. She may not do what her childhood mind dreamed up, but she found a way to be involved in what she loves despite the evil of diabetes while still making a living.

Needless to say, being two time zones away from my sister makes the distance feel even greater at times. With these bracelets, even when I cannot talk to her I will look at it and know we are connected. This was my thought as I was looking at the merchandise. Then I had an epiphany- not only are we connected as sisters, we have this remarkable connection through diabetes. There are things we can understand about each other that cannot be described in words. We have a trust in each other that is so steadfast and the illness has made our unbreakable bond even tighter. This thinking turned into reminiscing, which brought to light another epiphany.

Our father, Don, was diagnosed with Type I Diabetes at the age of 5 back in the 1950s. In those days it was such a different diagnosis, treatment, and prognosis. It was so much more difficult to manage. In adulthood it was thought that diabetics would have greater infertility rates. My parents were blessed with one pregnancy during which they were told the child will only have about 25% chance of having Type I as well. That was my sister, born healthy. A second pregnancy three years later produced another healthy baby, ME. Unfortunately we lost our father this month in 1987. Throughout childhood everyone kept a watchful eye on us, but doctors had determined that the 25% statistic was wrong and we should not worry about the eventual development of Type I.

I, of course, had my first minor scare with chronic illnesses in my pre-teen to early teen years. Type I was ruled out and not feared thereafter. Somewhere deep in my gut though, I always thought it was in my future. About three or four years after my fears should have been relieved by the rule out, my sister called from college with the news that she had Type I Diabetes. It was a devastating blow to our family. I cannot imagine what it must have been like for her to go through that process basically alone away at college. She was 20 years old.

For the next few years I watched her learn to live this new life (in snapshots during her visits home). Type I is usually diagnosed in childhood, previously known as juvenile diabetes. A 20 year old college student with only a mild cardiac history is definitely not the typical Type I victim. She was treated as a Type II patient for a while, which made her much sicker, until the determination was finally made that it was, in fact, Type I. An astonishing realization for us all. I also think the label itself mattered to her because we had lost our Dad to this very thing only a little more than a decade before. With this news, I thought that gut feeling I had all my life must have been misinterpreted. It was not my fate but my sister's...or so I thought.

I rested easy for all of about 20 minutes. My own health started flaring up about a year after her turmoil started. I managed my thyroid problems and stress as that is where they thought my symptoms stemmed. Three years after my sister's roller coaster ride into a Type I Diabetes diagnosis, I had to call her to take me to the ER because I had spent the day going about my now college life without being able to see clearly, dying of thirst, and feeling unbelievably awful. Within minutes of getting to the ER, the inevitable was seen. My blood sugar was 427 (I will never forget). The irony of this, I was the same age my sister was (almost to the day) when she was diagnosed. An irony that has been pointed out by many doctors as eligible for research.

When I was pregnant with my own son (an unplanned pregnancy) I asked as many questions as possible. I state that it was unplanned because it is never a good idea for a diabetic to get pregnant without good management and an "all-clear" from one's doctor. I was only 22 and only a year and a half out from my own diagnosis. I was told by prenatal experts then that Type I Diabetes is not as closely linked to genetics as Type II is. It was described to me as being more of a deformity like a missing thumb or a third nipple ;-) . With that said, I was told that my son has no more of a chance of developing Type I Diabetes than his peers; if anything the percentage was not even statistically relevant.

Knowing all of this now, and getting back to the amazing connection my sister and I had, that second epiphany struck me. We have this remarkable connection with our dad. I move through life, especially right now with my recent health upheaval, longing for my dad's physical presence. I have so many questions. I want him to hold my hand through this. I have complaints and concerns only he would understand and not try to dismiss. But, he is here with me daily. I have this connection with him. The three of us have this connection that so many others will not. You may think this is a sad or dark thing, but that is not how I see it.

I see my illnesses as guidance. I believe they give me knowledge I would not seek out, a compassion unmatched, wisdom beyond my years, and they keep me grounded and focused on what is really important in life. With diabetes this is constant because we check our blood sugars up to ten times a day sometimes. That reminder that I am not in control and I am not entitled to anything is there, always. This, I believe, makes me a better person. Truly, a blessing in disguise. Adding another layer of blessings, this bond/ connection between Dad and his only children, my sister and me. We have a new understanding of what his life was like and how amazing he must have been to make such an impression on everyone around him. We have an understanding of each other that no one else, not even other sisters, could achieve. Now, I want these bracelets even more.

My sister and I talk daily. Thanks to modern technology, we are constantly connected. I am even connected with my mom in New Mexico and my aunt in Utah and my cousins in California.... I have not felt "connected" to my dad in that sense since I was four years old. I now have a new perspective on our connection. It goes beyond father/daughter, it goes beyond two people suffering with Type I Diabetes, it goes all the way to the top. I have ALWAYS felt like my dad watches over me and helps guide me through life, making decisions and life choices or holding me through hard times. I now feel like he laid the path for my sister and I to walk down hand-in-hand. I feel his smile shining down on us, proud that we have grown into such amazing women and that we are closer than we could have ever thought as bickering kids.

In this day of Facebook and blogs and Instagram and Twitter and email and cell phones and text messaging, we get lost in these sometimes superficial connections with people. Let's make a conscious effort to put down or shut off the electronics and celebrate the REAL connections we have in our life. The connections with those who are truly important to you. The connections you desire to nurture and tend to are the connections you will carry with you through good and bad times to come. At the end of the day, all you need is love. Right, Lennon?

The Void ( A Tribute)

I really don't know where to begin...except at the beginning.  Two days ago we all got a call that none of us expected.  My uncle, Boyd Lunsford, had suffered a heart attack over night.  From those early morning hours until late that morning we all collectively prayed and cried, yet all of us geographically far from one another.  Many of my family members have built their lives in Texas, particularly the Dallas/ Ft. Worth area, but some further south.  As many could, they rushed to be by his side and to be with family.  Unfortunately, we lost him late that morning.

I would like to put this into perspective for my readers.  A few blog posts back, June 2012 as a matter of fact, I wrote about my cousin who passed suddenly.  That was his daughter.  The third child he has lost in addition to a grandchild.  Then, in October of 2012, not even six months later his brother passed (another uncle of mine).   This recent loss, has again left our family shell shocked still healing from the open wounds we have been mending.  As all tragic things do, this got me to go deep inside myself.

This site was set up to discuss the daily joys and struggles of living with multiple auto immune disorders.  As we all know, one facet of our lives does not define us.  It is simply a piece of the puzzle that makes one whole.  I had been down with the flu since Friday.  My doctors prescribed Tamiflu as the flu can be dangerous to all individuals but especially for those with compromised immune systems.  By Monday, I felt almost no relief so back to the doctor I go and a new prescription is written for an antibiotic as I am also battling strep.  So when Tuesday morning rolled around I was in no mood for phone calls.  I ignored them.  Within a few minutes if not an hour I received an email from my sister.  That's where I got the news.  I quickly got in touch with family in Texas and stayed close to my phone waiting for the best possible news.  It certainly ended much differently than we all hoped and prayed.  In the end, however, I do feel that my uncle is where his heart may have been for some time now.  If nothing else, he no longer has the daily trials we all see.

The next morning, as sick as I had been, my adrenaline, anxiety, and grief would not let me rest.  I walked my son to school.  Even with his enormous imagination and joyful way of describing it along our walk, I still felt pent up emotion.  When I got home I took my dogs out for a short walk, knowing if I pushed myself too hard I would be in trouble, but I had to 'release'.  On that walk something happened to me.  It was particularly peaceful. 

I could vividly smell the April morning air in our small town, my uncle's home town and where he will be laid to rest with those who passed before.  I saw a beautiful bushel of purple flowers.  Purple is my favorite color and purple flowers hold a special place in my heart.  It's like a high dose of serenity.  My uncle was a spiritual man. Anytime he would visit home he would come by and talk to me or take me to visit with him at his hotel.  He always had a story to tell and it usually ended with spiritual wisdom. I felt that rushing through me as I walked along the canal with my dogs. I wondered how these past few months had been so difficult, but in times of extreme stress I can somehow get outside of myself and feel weightless.  I talked and talked to my uncle and before I knew it my heart felt a little lighter.

Now, days have passed, memories are rushing in and family is tying up loose ends.  Services have been scheduled and we are all just trying to cope.  Something resonates with me from that walk yesterday morning, alone with my thoughts and words to my uncle.  My roller coaster, my emotions and rationality ebbing and flowing, my sense of loneliness and feeling lost all has a reason.  There is a void in my life right now I never imagine would affect me so greatly.  My sister.

About 8 years ago my sister and her husband decided to follow their dreams.  They threw caution to the wind and moved from New Mexico (the only place my sister and I have called home) and moved to California.  They met in college.  I could try to pretend I understand what they do, wanted to do, or even got degrees for, but I don't.  All I know is from the time I can remember my sister wanted to live in LA and have something to do with the entertainment industry.  Luckily she found a match in college that suited her and off they went.  At the time I had just learned I was pregnant with my son.

I have to admit I was astonished.  I was amazed that all these years of talk had turned into reality.  I felt so happy that my sister was spitting on everyone who had doubted her along the way, and her ambition never wavered.  I was happy that she had married a man that had similar desires to her.  I was happy that he encouraged her and supported her in her dreams.  But I was devastated.  I was hurt that they had not consulted the little sister before making this HUGE decision (as all married couples should, right?!)  And to add fuel to my fire, this baby growing inside of me, I thought I could only carry with my sister there to hold my hand.  But I stood strong and put on a brave face as they loaded the Uhaul and drove away from the apartment complex we both lived in.  I could not be the thing that held her back.  I had to let go.

Time has passed.  My son was born.  My sister and brother in law are slowly but surely finding their footing (not exactly a "go to college and get a nice job" kind of field).  I have since been married and moved back to my hometown.  I have made friends and lost friends along the way.  The most trying of all has been my health, I must say.  I just recently noticed how much harder it is to keep picking myself up and dusting myself off to continue moving forward.  On that walk that morning after my uncle passed my light-bulb moment hit and I realized it's "The Void".

I have a void in my heart.  My sister.  I never thought of it completely or in the light it was shown to me on that walk, but I realized all that she meant to me.  As kids (she is my only biological sister) we were always together.  She, this pretty little prim and proper princess with acting coursing through her veins and I, this rough and tumble tom-boy never understanding a word she said.  We had our differences and our fights, or so I thought.  I remember the day my parents drove her to college and the second the car drove away from our house, I crumble to the floor in tears.  I thought, "What?! I thought you'd be the happiest to see her go.  What is all this?!" 

Once I got to college, I went to UNM just as she did and just three years behind her, we grew so much closer.  She became my best friend.  I felt similar sadness when she left for California, but I thought my sadness would be replaced by knowing she was where she really wanted to be.  I also thought I would grow to learn to live without her so close.  I never have.  Recently, that has become so unavoidably apparent.

She and I lost our father to complications of diabetes when we were young.  Before his passing, my parents had spilt so my sister and I traveled from NM to CA for visits.  After his passing we continued those trips to stay close with his family.  Although in our small town in NM we had different identities, anywhere else we went she was by my side.  Even in our town she had my back when I was too young and dumb to realize.  When she went off to college, I was starting a new school and found it difficult to find friends.  I realized back then, she was the good one at talking to people and analyzing situations.  I didn't know how to do it on my own, comfortably.  When I got to college, she was a veteran and walked me through everything from finding a place to live, a job, and teaching me about finances and my future.  I always thought she was too dramatic and grown up.  I always thought she worried too much.  I now know, she did it for the both of us........my entire life.

Now I am in NM and she is in CA.  This last year has been tumultuous for our close and extended families.  I recently upgraded to a smartphone (I am technically challenged and was trying to be the driving force holding the USPS open) and so she and I have been in better contact.  You know them Cali folk, all tied down to their gadgets and too busy for phone calls.  For a long time I resented our lack of communication until I got the smartphone and realized the different lifestyles these two states have.....well let's face it, I was living a little in the past.  These days we communicate as if we lived in the same town.

That morning walk I took, sick as a dog with my dogs just to clear my head.  That morning walk to come to grips with the sudden passing of an uncle I have always learned from.  He taught me or should I say showed me what I was really reaching out for all this time.  My sister.  My best friend.  My caretaker.  My financial advisor, possible lottery-winner coach, therapist, and punching bag. 

I have written recent posts about feeling down and out.  I have written recently how difficult it has been to open up about all of that as well as feeling like I had no where to turn.  I have recently, openly written about my sense of hopelessness and feeling lost.  God takes His time, but He really does have a plan for everything.  He really does carry you through the most difficult parts of life.  This time, I believe through my uncle, He touch me.  He hugged me.  He held me tight and told me the answer to the prayers I have been screaming for months and for years. 

It is not friends I need.  It is not that dream job I need.  It is not the degrees I came short of before falling too ill to finish that I need.  It is not the perfect husband or child that I need.  It is and never has been about possessions.  It is the one thing that has stayed strong, sturdy, faithful, loyal, and honest from my first breath.  My sister.  She really does complete me.

We are opposites in every aspect.  Our personalities are different.  Our styles are different.  Our passions are different.  Our approach on life is different.  Even our spiritual and faith ideas do not always match up.  Yet somehow, they do.  So well.  She makes my puzzle complete.  I know God has His plan and certainly is not done with me yet, but without my sister He would not be able to complete my puzzle.  He knew we needed each other.  And that is something I will hold on to for the rest of my life.

 

Reducing Stress

It is winter and we are in the midst of the holiday season.  A time for joy.  A time for togetherness with loved ones.  A time of giving and being gracious.  So many pleasures wrapped up in just a few short months.  Let's be honest though, the holiday season can be a very stressful time.  This stress is often heightened for those of us dealing with chronic illnesses of any nature.  I thought it would be important to talk about some ways to help lower the stress level throughout the season so that we may all enjoy the moments we share.

Since diabetes is such a prevalent disease in our nation and across the world right now I believe this is a good place to start.  Stress affects Type I and Type II diabetics very differently and yet still has a great affect on the control of one's blood sugar levels.  Both Type I's as well as Type II's are cautioned to keep stress levels low in an effort to maintain some sort of balance with blood sugar levels.  I found a very useful link pertaining particularly to diabetics that is very useful http://www.diabetes.org/living-with-diabetes/complications/stress.html
Not only can the information on this sight be useful for diabetics, it has information that we can all use across the board.

For those of use with food restrictions such as Celiac Disease, Diabetes, or food allergies there are some quick easy ways to make your holiday season even brighter.  Often times going outside of your own home to eat with diet restrictions is very difficult.  Many hosts don't know of possible food allergies or diet restrictions of their guests.  Plus, it is difficult for any host who is not accustomed to your specifications to try to accommodate.  I have found for myself, because my digestive system is so sensitive and my symptoms can become debilitating quickly, it is easier for me to eat beforehand.  That way I can casually sip a drink or just enjoy the company at the outing.  Another thing I like to do is prepare a meal before, preferably an easy one or left overs, and pack them to go with me.  I may get a few looks or a question or two, but I just politely answer with whatever information I am willing to divulge.

I have found that it is important to focus on the moment.  Not only do I say this for the enjoyment of the moment, but also to prevent feeling overwhelmed.  No one person around you is going to understand your perspective of the world or how difficult the holidays can be for someone with a chronic illness.  Do not let their opinions or lack of knowledge influence how you take care of yourself while still being included in traditions.  It is easy to get caught up in what is going on around you, and you should, but remember who is number one.

A routine is something health professionals as well as mental health professionals emphasize as a stress reducer.  Throughout the holiday season a routine is nearly impossible to stick to, and yet with a chronic illness it is often important in the management of your disease.  With travel and feasts and traditions this can be difficult.  Do not beat yourself up over a few indulgences or strays from your daily routine.  Do your best with what you have around you and be proud of your efforts.

Most important remember how badly you feel when managing your disease gets out of whack.  Many diseases, in a state of stress, get exacerbated.  When this happens and you don't feel like yourself, it leads to irritability, fatigue, and opens your body up to risks of complications from whatever you may be suffering.  This, in itself, should be a motivator to keep you on track, let you loosen up enough to enjoy yourself, and that will allow you to not become overwhelmed.

This is a time of joy and excitement.  This is a time to remember how grateful we are to have one another.  This is not a time for our disease to control us.  Just like a rope is woven with many strands, our disease is only one strand of the rope that makes us who we are- STRONG.

Worry Wart

Over the past several years this giant snowball has seeemed to engulf my life.  More recently, particularly the past year or so, this snowball has begun to overpower me.  I've brushed it off, pushed it under the rug, beaten it down, ignored it, and tried to look at everyday as a new chance to shake it off for good.  To my own dismay, nothing has helped.  So now, I turn to you, oh powerful blog..........to air it all out and hope the release will spark change.

I wouldn't normally "air my dirty laundry" for the whole world to see.  I am beginning to understand that those of you out there who read my blog are generally people who are important to me and/or going through something so similar, judgement is never an issue......and I suppose if it is, my ignorance is bliss.  I don't have enough money for a therapist.  A journal is a good outlet and much cheaper.  A blog is somewhat of a combination.  Although, there may or may not be professionals reading it and offering up advice, a release coupled with the potential of a comment coming in with a perspective I cannot currently see may be more beneficial than thousands spent at a therapist.

I have been to therapists in the past.  I have always been told I have good coping skills.  I went to school for psychology and was stopped short 11 months before completing my bachelors.  (That is a goal I intend to keep and complete when I am able!)  I know a little about how the brain and emotions work.  Very little; nonetheless, I have a background.

I am a stay at home mom and so I have plenty of time for introspection.  I work my rear off with doctor appointments, insurance dealings, volunteering, and being a mom, but it is all done solo.  For a while, literally up until today, I thought I suffered from anxiety and depression.  I have been on medications for this in the past, but I prefer not to take medication.  It was first brought to my attention in my mid teens.  I mentioned to a professional that fights, whether physical or verbal, terrify me and always have.  I do not have to be involved in the fight.  It doesn't even have to have anything to do with me.  The outcome could have no effect on my life whatsoever, but when I see or hear people fighting I go into panic mode.  That opened a can of worms that could never be contained.  I was dubbed a sufferer of social/general anxiety as well as depression based on what my parents told the professionals and placed on medication.

As the years passed, I saw several different doctors and therapists and went on and off several different treatments.  Of course, as I got older the anxiety tended to fade a little (maybe it is better to say it got redistributed).  The things that would terrify me then no longer terrify me, but I have a whole new set of worries.  I never liked the medication.  It would take away my symptoms, but it would also numb me out completely.  I couldn't feel the good feelings or the bad feelings.  I was usually the one who initiated the termination of treatment time and time again.

Once I was sent to the Mayo Clinic and these diagnoses of these chronic, autoimmune diseases started rolling in, I started to notice that a lot of what I complained about as a child that probably motivated my parents to continue to seek help for me was more likely due to these illnesses not a mental or chemical imbalance.  Many symptoms have been explained away or treated as each disease has been diagnosed.  Along with any chronic illness diagnosis, chemically imbalanced mind or not, comes anxiety and fear.  If a major life change is caused by the diagnosis, it can also lead to depression.  As I was moving further and further away from the anxiety sufferer and falling into a chronic illness sufferer.........some where along the way the two collided.

I have to be honest, losing so much of (what I thought was) myself sent me into a grieving process.  Many people don't realize that making a life change of any nature requires you to grieve the loss of the old life.  Often, with illness, the person actually does grieve the loss of themselves on a path to finding their "new self" or new comfort.  The last 4 years has been me meandering in and out of depressed states.  I'd like to think that I am not a depresssed person because so much of what a clinically depressed person suffers with, I do not.  I do not want to take away from or discredit the real sufferers of clinical depression.  Just like diabetes or lupus, it is a real medical condition with some serious complications.  Clinical depression just does not seem to fit the bill for me.

I avoid telling my medical doctors when I am frustrated or down because they immediately jump to medication.  Most anxiety medications are also anti-depressants.  When a doctor hears I am having a hard time, their first thought is an anti-depressant.  I hate these medications.  I will do anything and everything I can to avoid them.  The truth is that it is hard.  All of it is hard.  Life is hard in general, but add these diseases on top and this juggling act becomes incredible.  Who in the world could deal with it all without ever feeling overwhelmed?!  My guess is, not a single soul.  Does that make me weak or "imbalanced" just because I am having a natural reaction?  While it is a negative reaction, it is still a natural response.  My thinking is, that is healthy.  It would be of concern if I floated through these trials without so much as a grimace.  So why the need for "help" with these medications?  Especially, when the negative feelings are not interfering with my daily life and are not lasting weeks or months on end.

I was out for my morning walk this morning and it hit me like a ton of bricks.  It is not depression per se' that is making me feel this way or that I need help with; it is anxiety.  I have been explaining to my husband recently that the world is beginning to frighten me.  Every where I turn there is a danger or a contaminate or a risk for myself.  Every step I take, every move I make, a complication could occur.  This is starting to affect my daily life. 

Let's go into this a little deeper, if you will.  When I was diagnosed with Type I Diabetes I remember the fear. I had Hashimoto's for about 7 years at that point, but symptoms were easily controlled and stability was easily reached.  No fear necessary.  As I have said before, my own father passed away from complications at the young age of 35.  That has never left my mind.  Then I was diagnosed with interstitial cystitis.  I had to pay attention to everything that went into my mouth as well as how much of it to help stabilize and control the symptoms for each.  Sleep, stress, excitement, sex, infection, exercise, etc. affected each.  After a few years, I fell into a grove.  It didn't stop there, though.

I never felt well.  I assumed that living with these illnesses was hard plus my plate was full with school and work and eventually a new son.  Then, the seizures started and progressed steadily.  I was finally sent to the Mayo Clinic.  That was traumatizing because I had only heard of lost cases going to the Mayo Clinic so I thought I was dying at the age of 25.  The seizures were treated, but no other explanation found for all my symptoms.  I was sent home knowing my journey was not anywhere near being over.  Gradually, we started getting answers. 

Celiac disease.  That means cutting wheat, rye, barley, and oats out of your diet as well as be aware of cross contamination when eating outside of your home.  Initially, this terrified me and infuriated me, but I read a lot of books.  I educated myself as much as possible to make this change as easy as possible.  The unfortunate part about it, I discovered I was one of the lucky one's that feels cross contamination within minutes and the symptoms do not let up for hours if not days depending on the severity and other factors.  Imagine digesting broken glass.  It is a painful, ripping and tearing sensation combined with cramping, nausea, diarrhea, constipation, etc.  Any uncomfortable stomach upset symptom, I get it.  I sometimes even get headaches and joint pains along with all of that.  When people ask why I don't cheat I ask them "Would you rather eat that piece of bread and wake up with the worst hangover you have ever had or just look at it longingly? I choose the latter". 

Undifferentiated Connective Tissue Disease.  So much of the treatment for this disease has to do with reducing inflammation.  To reduce inflammation they generally use steroids or NSAID's (non-steroidal anti-inflammatory drugs).  Steroids raise your blood sugar to dangerous levels.  Doctors advise against this treatment in diabetics, unless the benefits out-weigh the risks which is rare.  NSAID's are rough on your stomach.  Not only that, they thin your blood so they are dangerous for people with ulcers.  Celiac disease causes damage in the small intestine lining, sometimes going all the way through the intestine wall, so NSAID's are not recommended for patients with Celiac disease.  It can cause internal bleeding.  Our only option was an anti-malaria drug.  I do not know the science behind how it works, but somehow it does.  In the rare case I suffer a flare up, I dread the steroids necessary.  In addition to the threat of an anti-inflammatory drug, steroids leave a patient more susceptible to infection (which for myself, the danger is already grave), can cause bone loss (which for myself is already a concern due to malabsorption), and can trick the adrenal glands into thinking they no longer need to work which is a disease called Addison's.  My doctors have been on high alert for Addison's since 2009 based on symptoms and the progression of the other illnesses.  All of which seems like a ticking time bomb to me.

In the fall of 2011 I was finally seen by a gastroenterologist for all the stomache issues I had complained about for years.  Once they Celiac disease was diagnosed and treated then found to be stable based on blood tests, there was no explanation for my continuing symptoms on a daily basis.  I was literally not digesting food or absorbing it.  I spent the majority of my time for many months in bed, in pain, and very weak.  Over this past year it has been discovered slowly that I have pernicious anemia, chronic atrophic gastritis, colitis, proctitis, and lastly gastroparesis.  In layman's terms that means my immune system is eating away at the lining of my stomach causing ulcers and malabsorption.  My stomach produces no acid which is as bad as having too much acid.  This causes messages to get lost so my pancreas does not produce digestive enzymes.  The undigested or imporperly digested food then tears up my colon.  There is some immune reaction in the colon as well, but no definitive terms other than those I previously stated.  As you can imagine, this adds a whole other level to the Jenga game we have going on here. 

Food is a source of contention for me.  I am a Type I Diabetic on an insulin pump (plus I am human) so food is a necessity!  Due to the Celiac disease and the diabetes my options are pretty limited.  Add to that the digestive issues and we have to cut out even more.  Proteins and fats are the hardest things to process and fiber is too bulky.  I am limited to soft foods that are easy to digest, often liquids.  I have to find the things with the highest nutrtional value in the smallest package to insure I am getting everything I need.  Almost like getting gastric bypass without the gastric bypass.  Plus, I had to stop running because it was too much for my body and my digestive system.  I turned to alternating walking my dogs and yoga.  Running was my passion.  And still, it didn't stop there.

I was sent to an immunologist because it was becoming apparent that my immune system was very confused about its job description.  At this point everything but the seizures were being caused by an autoimmune response.  Plus, I had the rare disseminated histoplasmosis infection in 2009.  The immunologist diagnosed my Autoimmune Polyendocrine Syndrome Type II based on blood tests and symptoms and history.  He also discovered several allergies.  Everything from cats, mold, and pecan to grass, mulberry trees, and cedar.  They started me on allergy shots shortly thereafter, but warned the shots are only to help strengthen the body but they do not eliminate the threat of the allergen.  I was prescribed an epipen and told to avoid my allergens as much as possible because my immune system is in such high alert all the time.

At that point, I started feeling like the girl in the bubble.  It was explained to me that as long as my immune system is in attack mode, it will continue to do just that.  It obviously is confused as to what is foreign and what is not so the idea is to avoid as much of the dangers that we know about as possible to try to prevent further progression of APS Type II.  By the spring, I started to fall into a grove and by early to mid summer I hit stability, like many of my doctors had been hoping for across the board for years. 

Like anybody else in this world, I am not immune to everyday struggles, trials, and tribulation.  I had my own set of personal mishaps over the summer and into this fall.  These more recent neurological episodes are our new mystery to solve.  As I wait for these appointments to come and wonder what the outcome will be.  I wonder if we will get any answers or just more questions.  I wonder if relief for my headaches and disorientation will come soon. 

Last week I was washing dishes and a glass began to fall.  I went to catch it before it fell into the stainless steel sink, but my reaction time was not fast enough.  I ended up tearing up my ring finger on my left hand.  I had to go get it treated at the Emergency Room.  I hate the hospital in general, so I was even more irritated that I was there for something as mundane as a glass cut.  Trying to not make a big fuss over it, I declined the numbing of the wound before they fixed it up so the whole experience was ridiculously traumatizing.  A week later I still am unable to get the finger wet or use it.  I usually take my dogs when I walk (we have two), but I cannot hold a leash so I cannot take them.  It would just be cruel to take one and not the other.  Of course, I cannot do yoga.  It's amazing how much you use that one finger.  The week has been a little rough.  Not to mention how badly it hurts. 

So, as I was walking this morning, irritated because I wanted to take my dogs.  Irritated because I'd rather do yoga since I have been deprived of it for a week now.  Then I thought, "Everything I enjoy gets taken away from me!" As I talked myself down from that negativity, reminding myself the finger injury is only temporary, that's when the light clicked on.  I was starting to beat myself up over being depressed when I realized, it is not depression at all.  I have the mindset to walk myself out of that hole.  I have the mindset to see the positive in all the negative.  That's not the mind of a depressed person.  Often, clinically depress can not even fathom positive thoughts.  They do not see a light at the end of a tunnel or any hope.  The anxiety of my fears is crippling me.  As that thought came into my head, I started to examine recent events and my reaction to them.  I started to notice just how badly the anxiety may be affecting me. 

I am low on energy as it is.  I prefer to utilize the energy I have for my son and husband.  They are my priorities and therefore they deserve my best.  My second priority is exercise.  Without exercise, digestion, stress, and energy would be huge concerns.  Exercise gives me more energy.  It loosens my joints and muscles with lubrication and blood flow.  It allows me this time to myself to just be me, and that is a huge stress reliever.  Without exercise, it seems as if nothing moves inside my belly.  Of course, exercise stabilizes blood sugar.  All other energy just trickles down.  If I have enough energy for fun with friends or family, I'll take advantage.  Usually, the latter is what suffers the most.

I have noticed, moreso lately, that I haven't had a whole lot of energy left over for extra fun.  I have declined invitations by friends for many things.  Partly and mostly due to the fact that I do not feel well enough to get out and do something.  Many times it is because I am just zapped completely of energy.  While thinking back, I think anxiety has a lot to do with my lower than normal energy lately.  I am so consumed by what may attack me next or what may be affected by external factors I cannot control, I have resorted to staying in my bubble as much as possible. 

Spontaneity is not in my vocabulary currently.  I have so many medications, diet restrictions, and physical limitations that picking up at a moment's notice is nearly impossible.  If I do not have food prepared, I cannot just walk in to any grocery store or fast food restaurant and order something.  Believe it or not I have been contaminated many times from just ordering a fountain drink.  These restaurants are full of contaminating foods.  Most packaged food has some sort of preservative or chemical or gluten that I cannot eat.  My diet consists mostly all natural, whole foods.  That's hard to get on the go.  I need to be close to my insulin and testing supplies as well as my emergency medical devices.  Although, many of this stuff comes in a portable form, I would need a suitcase rather than a purse to carry it all with me at all times. 

The shear totality of what I face on a daily basis and the fact that I am completely competent and aware of it all leads to some overwhelming feelings.  I tell my husband from time to time, I wish I didn't understand it all so well or that my awareness will fade a bit.  I am already a bit of an introvert.  I have always been a bit of a worrier so I guess that would classified as anxious.  Pile on all these illnesses, their complications and their treatments, I've got myself in a bit of a beautiful disaster waiting to happen. 

I move on to thinking (as my problem-solving, take the bull by the horns mind works) how do I fix this?  I do not have money for a therapist nor have I ever felt like they help.  I do not want to be classified as depressed considering I am grateful for the gifts in my life and see them on a daily basis.  I do not want to burden friends and family with these thoughts.  They run through my head continuously.  If I were a friend or family member of myself, I would run at the thought of constant complaining or worrying.  We all have things to worry about.  What makes me different?  Different worries, of course, but my worries are no more important than the rest I would assume.  How do I tell myself to have faith in God's plan and stop sweating the mall stuff?  How do I tell my heart to listen to my head?

And with that, I end this.  It is long enough to begin with, but really how much deeper can we get into worrying and anxiety?  All the worrying in the world never fixed any crisis.  Worrying has never solved any problem.  Anxiety seems useful in a dangerous situation, but to have that "fight or flight" response on a constant basis is exhausting and seemingly useless.