12 Weeks Proud

Well folks, I have made it to 12 weeks. I feel like every ache, pain, scar, itch, etc. is all worth it when I down a plate of French fries from In N Out or Red Robin.

I am able to eat a bit more variety these days. I tried P.F. Changs the other day with a cousin of mine. I had the chicken fried rice and it was amazing. No trouble with bloating or distension. I also have been able to eat a family recipe of green chile stew that I love and had to avoid the last several years because it would cause so much pain, bloating, distension, and it felt as if it just sat in my belly for days. No longer :-) And of course, as I mentioned earlier, hamburgers and French fries with no regrets later. I am taken aback at times with how well I handle things that were so frighteningly painful before.

I can't report any weight gain or changes at this time. My appointments are beginning to be further apart. I enjoy that a lot. I will see the gastroenterologist as well as the Medtronic rep who is guiding my doctor through checking the status of and possibly adjusting my gastric stimulator on November 14th. I plan to have a good report.

I will say that I still deal with a lot of pain. There is a lot of cramping as well as continuing incision pain and extreme tenderness around the pocket that holds the device. Most times I eat (at least 98% of the time) it feels like I drank a cold glass of water and went for a quick sprint. It can last anywhere from 30 minutes to a few hours. I was told that is just the stomach itself getting used to moving again and possible getting used to the electrodes. I assume for someone as sick and weakened as I at the time of surgery, it would definitely take a great deal of time to rebound.

Emotionally, I am still on a roller coaster. I am so thankful for this new life. It is so difficult to wake up in the morning and still not feel refreshed. That's an issue I have had for a while and may not be directly linked to the gastroparesis or malnutrition. It is difficult to have that cramping after meals because I wonder if there is something wrong. That is probably a direct reflection of my personality. It is difficult to feel the pain of the surgery and the device in the shower, in bed, as I am dressing, when I tie my shoes, when I sit down.....it could go on. It is just an adjustment. I believe the pain is a way to get me used to the ways I need to modify my movements and actions to accommodate for the device in the long term. If I get in the habit of protecting it and favoring it due to pain now, it will be a habit by the time the pain subsides so I will continue to modify my actions.

As I go around and establish with new doctors in the area I find myself feeling alien in this world. Although many doctors have heard of the device, it is clear in talking to them that they really have a very basic idea of what it is. That carries over into everyday life because most people have no idea what gastroparesis is let alone a gastric stimulator. When I say I have just had surgery three months ago, I am looked at as if I should be back to normal life. Inquisitive eyes follow me often, but never ask any questions. In talking to a friend who has a rare illness that is very different than my own she said she says, "Believe me, it is more awkward for me than you." I found that to be a funny response.

I walk around this thin 30 year old woman. I am often dressed in athletic clothing because of the elastic waste bands and their comfort for my situation. I am picky at the grocery store, picky at restaurants, and often do not accept drinks or snacks at friends or families offer. For those who do not know, I can only imagine what thoughts run through their minds. I feel the need to constantly defend myself or justify my behavior. Then I battle myself thinking I owe them nothing and I have earned my stripes. A Type A people pleaser at its best may not be very conducive to chronic illness and rehabilitation for major injuries.

Ultimately, I have made it this far. There are ups and downs but that's life with or without chronic illness. These battle scars are a reminder of how strong I am physically and mentally. They are a reminder to take it easy or a free pass that I fought and scavenged for and fully deserve. Whatever we face in our days, take time to look back and pat yourself on the back for accomplishments others may not have noticed. Accolades do not always come in the form of trophies or certificates- they come in the form of a satisfied belly after a meal, or the smile on my son's face when we pull up to a pizza place he enjoys. It is great to see the sun rise everyday and know I have another chance to live this life.

Life wins

Time sure does fly. I am officially about 10 weeks out of surgery as of tomorrow. Internet was down for a bit so there was a lapse in my posts. I wanted to give an 8 week update and then move on to regular blog posts and monthly then yearly updates of the progress on my gastric stimulator. Life happens and here we are. So we'll go with a 10 week update.

I have now made almost all the rounds to all the specialists I need to see and/or establish with in Texas. Of course my endocrinologist and gastroenterologist were already familiar with me due to the surgery and hospitalization. I needed to be established with a rheumatologist and a neurologist. Both of which I had very interesting encounters with I am sure you would enjoy, but I'll get to that after the update.

Things are progressing well. I am now officially independent. My mother-in-law, who was here for additional support with household chores and womanly things, went home the first week of September and within a few days my husband returned to work full time. This means I am back to being stay-at-home Momma making meals, cleaning, dishes, and daily errands. Anyone whose knows what it is like to run a household can appreciate how hard it is; I now have a new appreciation for how difficult it is and myself (pat on the back).

I have been increasingly sore and tired. Let me say that I am taking it very slow. This is just a surgery that entails a lot of adjustments along the way. Little things like getting dressed, putting on shoes, getting in and out of a vehicle, standing in lines, and long conversations all use your abdominal muscles a lot more than we realize. The bending and twisting and stretching and stabilizing all takes extra effort. I can feel it all, but will try to hold on to the memory of these feelings as an eternal appreciation for the miraculous human body.

The cramping of my actual stomach is starting to subside. The muscle that hasn't been used in years had been prominently reminding me of it's weakness as soon as I tried to eat soon after the surgery. In the beginning it was a constant cramp as if I had drank a glass of water and sprinted down the street, but it has moved towards a sporadic cramp once or twice a day after a challenging meal. A challenging meal is anything larger than a pediatric sized meal with any normal amount of fat. Because I was used to a minimal diet of very basic, bland foods I am able to avoid this fairly easily, but as my appetite increases and my body craves more I am challenging my thriving stomach as recommended by doctors and reps from the manufacturer of the gastric neurostimulator. Depending on who you speak with the device can be referred to by many names i.e. gastric neurostimulator (the box reads this), gastric stimulator, stimulator, gastric pacemaker (which it is not).

The incisions themselves are mostly healed and closed. When I saw my gastroenterologist yesterday those were his words. I feel them; tender, sensitive, tight. The pocket where the device is has tightened up. The swelling has gone down enough that I can somewhat tell what it will look like for the duration. In saying that, it is close to my belly button, hip bone, and lower ab of a six pack (which I don't have either I just do not know the technical term) so it is an adjustment. A twist, a turn, a stretch, or a bend can push it in an awkward way or pinch the tender tissue inside the pocket. I assume that will lessen in time as well. It is bearable and probably a necessary evil to help me adjust my activity to accommodate my new addition.

Now, you are curious about my eating and weight aren't you? Well, breakfast is the same (a protein shake and a banana), but much more comfortable. I also wake up hungry most days. Before the surgery my appetite was nonexistent. I am adding more variety to my other meals. Meats, especially red meat, was a real challenge before. I always felt like it sat like a brick in my belly. Now, I even crave it sometimes. I have stuck to shredded beef and ground beef. I am able to eat chicken and pork more regularly as well, but again in small portions and usually ground or shredded in some way. I still enjoy the staples I got so used to such as eggs and smoothies very often. Sometimes that chose is made by my appetite and sometimes it is made out of necessity (need to eat overrides desire to eat). And most importantly, at my appointment yesterday I officially broke the 100 mark. Although, I don't think specific numbers are important here because every body is different, that mark to me was a major goal. In total I have gained 5 1/2 pounds. From here on out I will only refer to my weight gain in numbers but no need to divulge my weight. This blog is meant to inspire, inform, and connect people and I intend to stick to that aspiration.

Let's move on to something I thing is crucial for anyone going through this same situation or something similar that can relate. The emotional side. It is a roller coaster just being chronically ill. It has been an even more eventful roller coaster this last year on this journey that lead me to Ft. Worth, Texas and the gastric stimulator. And the ride does not stop there....at implantation. The physical pain does a number on your psyche. I can and have said this surgery is equivalent if not worse than childbirth and I do have a child I birthed. The recovery is long.

Imagine getting up every single morning and stubbing the same toe. Stubbing a toe hurts, bad if done right. First thing in the morning, that puts you in a bit of a bad mood for a bit. Then the pain lingers and lingers throughout your day only getting worse as you tire. By the end of the day, you want to throw in the towel, put your foot up, and hope tomorrow is better. That's a bad analogy, but you get the idea. The twisted thing about this recovery is that the body is now getting the nutrition and substance it has been needing for so long. This means the mind recovers quicker than the body; your mind runs on glucose. So the mind becomes willing as soon as the pain is bearable enough to push through, but the body is not capable of "pushing through" as of yet. This leads to frustration and feelings of guilt and inadequacy in certain areas.

Moving on to being a woman going through this........gaining the weight. I am going to be more candid in this than I would prefer, but people seeking connection and validation need to know this. I have been unhappy with my appearance for years. First, it was the weight loss and that it was happening so quickly. Then, it became the fact that I looked sickly thin. Also, the pain in my belly lead me to wear looser fitting clothes than I had before and has kept me limited in that area. I have longed for a more womanly figure for a while now and all I need is a little weight to get there. I also know I need weight to function and live- not only is that fact known academically but I also physical felt extremely weak. Now, the weight is coming on just as is intended. 5 1/2 pounds in a little less than four weeks is a lot for a woman to take in, especially a woman with a Type A personality whose minds never stops. My mind runs straight to the worst case scenario.

What would be the worst case scenario? I ask myself as I am struggling with this happy/sad feeling I got last night after the elation wore off from a good doctor visit. Is there one? Then I think, "No..." I am so grateful for this new lease on life. I am so thankful for the time I have with my family. I am so thankful I am not declining with no answers, resources, or support. I am so thankful to have some normal meals and be able to leave my home for more than a few hours at a time with less fear. It is a battle between vanity and life. Ultimately life wins.

Vanity, I am learning, goes out the window. It should have long ago, but I am a 30 year old woman living in our society so I cannot avoid some normal insecurities. Having a pocket watch sized device in my abdomen is noticeable and with the sensitivity of the area, I have to dress loose. Being only 5' 3" and making it to a buck make that easy because everything is big, but it is difficult because I still want my clothes to be flattering and womanly. My skin is a bit of a mess because it has always been sensitive and any change exacerbates it along with my hair and nails that have not gotten proper nutrition in some time. Rashes, acne, peeling nails, frizzy hair, etc.

Writing this is so cathartic though. That was part of the intention in starting the blog to begin with. In writing the ups and downs I am going through throughout this trial I am facing, I am seeing how blatantly obvious and wonderful the ups are and that makes me feel so silly for even noticing or complaining about the difficulties. All of the body issues will come to an equilibrium in time and will no longer be a complaint. I am sure I will find my new self in this new skin and be able to dress it beautifully and comfortably or at least to my liking. Maybe someday I will get back to a routine with household chores and daily activities......and maybe I won't, but it will all get done. One giant learning experience that will serve me greatly.

Ending with a smile. Glad to be ten weeks out. Glad to be in an environment with resources and support. Glad to have a new life with my family. Glad to eat. Glad to be alive. Glad to spend quality time with my miraculous son.

Time for dinner.

8-week post surgery update coming soon

Keep checking - it will be posted sometime soon. 

Roller Coaster

Today I had my second appointment with my new rheumatologist. I like her. Dr. Banerjee. At my last appointment she spent a lot of time with my husband and me. She was very thorough and did a full exam and workup. I could tell the whole time that she had a suspicion about my tentative Undifferentiated Connective Tissue Disease diagnosis. I was hopeful because I hate the harsh medication: plaquenil- an anti-malarial med.

I went through the exam and tests. I accepted her referrals to a dermatologist and physical therapist. My skin is always irritated in one way or another so I would love some relief. The physical therapy I could give or take. It is for joint and muscle pain, but I have seen them before to no avail. My derm appointment is soon. I am ready to feel better with better treatment at the root of the issues.

At the appointment today I got some unsettling news. After going through my medical records/history and reviewing my lab results she does not feel there is any rheumatological disease. GOOD NEWS plus no plaquenil. But......some electrolyte levels we low; sodium and potassium. In addition to my skin irritation, hyperpigmentation, and symptoms mimicking lupus, she strongly feels there is adrenal insufficiency. That is Addison's disease. BAD NEWS.

Doctors have been dancing around this with me for years. It is part of APS Type II. But I am not ready for more tests. She suggested another skin biopsy, this time of the vasculitis on my hands. Last time I had one of the face that proved hyperpigmentation. She also is going to speak to my endocrinologist about further testing. I have been tested before, but there is more they can do.

I lost it. I broke down and cried in her office. Blubbering, telling her I was glad to be relieved of one diagnosis, I am just not ready for more. ....or more tests and waiting. I thought I could have a break for a little while. But I want to feel better.

On a happy note, today is my seven week birthday after surgery. So far, so good.

Snack For The Soul

When I referred to my surgery date in my last post as my new birthday, I had no idea how deep those feelings would really run. Every day I wake up feeling a little different. Every day there is some flash of novelty and comfort in my new world. Every day I become increasingly more aware of all the gifts that surround us. That all sounds so mushy and cliché, but it is so blatantly true.

I just had my 4-week follow up appointment with both of the surgeons who performed the procedure of implanting the Enterra Gastric Neurostimulator. I have to say that I had been really nervous about the appointments. I seemed to have hit a plateau shortly after the procedure and didn't seem to be improving in terms of nausea, fullness, and lack of appetite. For some reason in my mind, the natural processes in the world are in my control...... (Although it never seems to work out the way I want it). I was preparing myself to hear all the things I had done wrong since the surgery that would be halting my progress. I was so prepared for all the wrong things.

My first appointment was with Dr. Weiner, my gastroenterologist, and the Medtronic representative. Medtronic is the manufacturer of the Enterra and the rep helps the doctor become familiar with the treatment and technology.

At that appointment they asked about my symptoms. They were concerned with my level of nausea because that was one of my worst symptoms prior to surgery. I am happy to report that it has gone down at least 50%-75%. I complained of a lot of cramping. I describe it as chugging a glass of water and then sprinting...that kind of side cramp is what I feel. They explained to me that my stomach, the muscle, hasn't been used this way in a long time. As with any atrophied muscle, it will fatigue, cramp, and get sore. That's normal. I also complained of constipation. (TMI? Well this blog is to help inform, comfort, or inspire those in similar situations, so we have to talk truth) Dr. Weiner talked about my medications and my absorption rate. With my stomach processing more before things move into the small intestine, I am absorbing more of everything (Woot Woot!!) this leading to my system getting overloaded. He reduced one medication in half.

All in all, the symptoms, pain, soreness, and novelties are all normal and a positive sign. The rep said, statistically, I am in the top 5% of patients in terms of progress at this point. The doctor was really pleased as were my husband and I. Even the nurse and front office woman were in on the excitement as we have gone through this journey together.

"Weight gain at this point?" you may ask. Well, I am almost at my pre-op appointment weight again, but I am going in the right direction and that is more than we can say for the past several years. Appetite? I wake up hungry nearly every day. My portions are no bigger, just a better variety and more consistent. My diet restrictions are the same but I am able to enjoy more meats, vegetables, and fat because they no longer sit in my stomach for hours on end. I still get a distended belly every time I eat or drink. That will likely continue to happen just as an untreatable symptom of gastroparesis, but my stomach should grow a little so I can eat better portion sizes in time.

To check the device itself (remember it is sewn into a pocket of subcutaneous tissue in my abdomen) they held a large smart-phone looking thing (called The Enterragater, gggrrr) up to my belly where the device is, pressed it against my skin, and the screen started showing them information. Based on that information, which all looked positive, along with my symptoms they decided to bump the voltage up a notch. They told me to expect a fluttering sensation and possible nausea for the next 24 hours but it would subside. Essentially, that should increase my stomach activity a little more. They were right. Almost instantaneously, with a giggle, like feeling your baby kick for the first time, the fluttering began. I am lucky to say it never made me nauseous, just tired.

Unfortunately, with the start of the new school year I managed to catch a nasty cold. This has been a small setback, flaring up some unwanted symptoms, but what cold doesn't? We were told we should be able to see full effects of the device in 6 months to a year. I also have managed to unknowingly, in the fog of euphoria, ingest dairy, chicken, and strawberries - all of which I have allergies of some degree to. So a few more kinks, but thus is life.

The second surgeon merely needed to check the incisions. He works closely with Dr. Weiner and so he was already up to date on my progress and was pleased. Can I type that word enough? It is such a foreign feeling to me to walk out of doctor's offices with hope and positive reports.

I am (actively trying) not to allow the fear to hold me back. I am still trying to be conscious, careful, and conscientious, but I am human and sometimes forget to double or triple check ingredient lists or that I had strawberries yesterday so they aren't allowed for a few days if I would like to continue to feel well. And I don't beat myself up over a minor mistake because it will pass.

My diabetes is a bit of a roller coaster right now. I see my endocrinologist next week. With absorption rates changing and fluctuating so are my insulin needs and blood sugar levels. I have been struggling with a lot of lows which has only encouraged more calories. This crazy balancing act that is life can be fun sometimes. I am serious; I am enjoying this challenge.

I am slowly moving back in to normal daily activities. I am beginning to move better and with less pain. It will be a work in progress to learn to move with this inside of me, but as with anything, we adapt. I am smiling more. I am laughing more. I am enjoying more. It is amazing what a snack can do for your soul.

July 31, 2013- My New Birthday

On July 31, 2013 I underwent the surgery to implant an Enterra gastric neurostimulator. Right upfront, I will say, I can honestly say I know of something that compares to childbirth. The difference being that you do not come home with an adorable infant and all those endorphins to distract you from the pain. Aside from that, it is the birth of a new life.

On July 30 I was admitted to Texas Health Presbyterian Hospital of Dallas. The night before I began a cleanse, of-sorts, clear liquid diet. On admittance I was told nothing by mouth as if 5 p.m. that evening. The surgery was scheduled for 9 a.m. the next morning. An IV was started and some blood tests were run. And then, we waited.

The next morning I was transported to the pre-op waiting/ holding area (real terminology lol). It felt like my husband and I waited a life-time before the anesthesiologist came to knock me out. Before I knew it I was waking up with an incredible burning throughout my belly.

The surgery consisted of an endoscopy and two incisions. One horizontally above the lowest left abdomen, about 2 1/2- 3 inches long and the second vertically right under my sternum, about the same length. Underneath the horizontal incision they created a pocket in the subcutaneous tissue or fatty-tissue. Inside that pocket is the Enterra gastric neurostimulator. It is about the size of a pocket watch. I don't know the details on exactly how they connect leads into the stomach lining. These leads are what they use to "stimulate" the stomach to move as a healthy stomach does, or as close to that as possible.

The first night I was vomiting up everything from medicine to water to the smoothie my husband had bought me for dinner. Unknowingly, he had gotten one that had frozen yogurt in it. I am allergic to casein so I cannot have dairy. We still don't know if the procedure or the smoothie or the medicine made me so sick. By the next morning they had my pain controlled and I was able to drink an all fruit smoothie. That afternoon I had french fries. Not the best dietary decision, but exciting nonetheless.

The recovery process has been a challenge. Having your abdomen cut in to is painful. You have no idea how much you use your abdomen until you can't. I have needed help with nearly every daily task from using the rest to putting on clothes to even sitting up. I stayed in the hospital a total of 5 days so only 3 days after the procedure.

By the second day I was able and eager to get up an walk. I walked the length of the hospital hall I was staying in with the help of my parents. I was lucky to have my husband, son, mother-in-law, cousin, parents, brother, and niece spend time with me in the hospital. The distraction of love and support was indescribable.

I had my first post-op appointment yesterday. I am almost up to my pre-op weight, but I have gained weight since the procedure so that is an accomplishment. The incisions are healing well and my pain is par for the course.  That was my first long car ride since the drive home. It is a little painful, but getting easier. I am eating 3 square meals a day. Although my portion size has not gone up, the consistency has. That included with no feelings of overly full or long lasting fullness. All these are positive signs.

Overall, I am extremely happy with the decision to get a gastric stimulator. The doctors and hospital staff were wonderful. I have a long way to go but a good team behind me to help along the way. My mother-in-law has become my arms and legs around the apartment walking the dog, cleaning, and doing laundry. My husband is on leave from work and he takes care of me and our son, making sure we get bathed, clothed, and fed everyday.

I will keep you posted on my progress throughout this journey.

Unexpected Joy From Unexpected Change

I am excited to say that a new chapter of my life has begun. I moved to Ft. Worth, TX. It happened so quickly. After being torn between staying where my heart is or moving to a place where my medical situation could be better handled, I got a shove in the right direction. With the help of my family, working as a ninja-intervention team, we found a place to stay that met our needs. Within days of locking a place down, our home was packed and moved. The week of July 4th, we made Texas our new home.

Within days, I quickly noticed what a God-send it was for my family to be so aggressive. I have an unlimited amount of options for food at much cheaper prices than I ever enjoyed in New Mexico. Shortly after arriving, my Dallas based gastroenterologist called with a date for the gastric stimulator implant surgery. In saying that, they requested I make a few appointments and undergo some last minute testing.

By now, I have been here with my son for two weeks. I have lessened my food bill by at least a third, which will come in handy when medical bills start rolling in. I have met with both doctors who will be involved in the implant surgery and I am being evaluated to get my gallbladder removed finally. Before, no doctor wanted to do surgery for fear of unknown risks.

I cannot even explain how good this all feels, as strange as that may sound. Not only was it nice to be readily available for all these appointments, but it was even nicer to only travel a few miles to get home to rest thereafter. I have also enjoyed the company and support of family who live close by. Beyond all that, and possibly most important, I feel like part of the human race again.

For the past 5 years, limitations have been put on my life time and time again. Friends dropped off the less active I got. They stopped calling and interacting with me with claims that I was no longer acting like myself. All of this I can understand because I often wanted to run from the uncomfortable situation I was facing, but I did not have the luxury. I got strange looks for my thinning frame and even stranger looks for my peculiar diet. Adding to that, it was a daily stress and mission to ensure I had food available that I could ingest without increasing my symptoms. I felt like an outcast. I felt like a spectacle. I felt like an alien.

I am in this new environment. Although I have not had the opportunity to make new friends, I have enjoyed the company of family. I can go to any store, even a corner store, and there are options available for me. On top of that, with as busy as I have been, it has been difficult to stay on my routine. That would normally be very troublesome, but here I can even go through a drive thru and order something. This is not to say that I am falling in to bad habits. The accommodations so many places offer for specialized diets and healthy eating are amazing.

No one looks at me strangely when I order so specifically. No one looks at me strangely when my shopping cart is filled with all natural foods minus gluten and dairy. I am sure my small frame and casual dress does spark a few questions in people's minds but you never see it in their face. Everyone from customer service to health care workers to the average Joe has been so pleasant and welcoming.

My son is adjusting well. Of course, he was sad and scared about the move but we explained all the perks we'd be able to take advantage of. As the weeks have passed and he has seen and experienced so.much, he is sinking in to comfort. He enjoys his cousins company and hasn't even spent time with them all yet. He enjoys all the outings Momma is able to make. We have found a school close by and he thinks it looks inviting. He has seen the hospital where the surgery will take place and met one of the surgeons. He feels confident that improvement is sure to follow.

With all this, I am feeling so blessed. God never answers our prayers exactly as we lay them out or in the manner we wish them to be answered, but he answers them all the same. He has laid this path that I have reluctantly followed for years. Here I am, seeing a light at the end of this tunnel of the unknown. All my life my health has been a mystery. Now, all the doctors agree. All the doctors believe the whole picture is in view. No doctor is acting scared or overwhelmed. It is a feeling of peace and ease I cannot describe.

We are still awaiting my husband's job situation to be ironed out, but we know it is simply a matter of time. It has been a challenge to be here without him.and go through all these life changing events over the phone. We miss him terribly and count the days until it is all final. Nonetheless, the feeling of grace fills my son & myself.

Gastric stimulator, we await you and welcome your implantation. July 31 is the big day. I hope to get back online and fill you all in on my new bionic body and the great changes we expect to come.