Friday, September 28, 2012

The challenges of trying to merge two worlds

Carissa Haston
G-PACT Founder and President

I live in a world that is different from most. I face a different reality than that of your average 34 year old. Mine is a world which is very real, a normal for me, yet poorly understood by the majority. It is a world in which my every attempt to describe it will not even begin to bring you close to understanding the impact it has in all aspects of my being. And while it is impossible for you to step even briefly into my world and get an adequate sense of my daily life, it is also impossible for me to step into your world and get a sense of reality in what is deemed to be normal in the average American lifestyle.

Since 1994 I have been challenged by something much greater than myself, human capabilities, and at times, I have even wondered about God. Being diagnosed with gastroparesis at the age of 16 was only the beginning of what would turn out to be both the biggest horror in my life and the greatest blessing as well. Since then I have been diagnosed with a number of other conditions which have resulted in six accounts of cardiac arrest, among other complications, and eventually led to total gut failure resulting in the need for a five organ transplant to save my life. What was intended to keep me alive for years, IV nutrition, eventually almost led to my death. I often wonder what my world would be like if I had never developed these conditions and my life went in another direction. What kind of person would I be? What would my passions entail? How would my world and the world of those around me be different? What would my perspective on life be? Where would my priorities lie?

Although I often ponder these questions, it is impossible for me to begin to fathom what the results would be. My life has been so consumed by fighting to get around in a world submerged in medications, doctors, hospital stays, plastic tubing, needles, artificial food, and that plastic tape that peels off all my skin cells when removed. I don’t know life any differently. Since my transplant my life within the medical system has improved, but will never be to the point of complete independence.

While no one has full control over his or her future or daily events, my activities are even more limited by something over which I have no control. My world is not managed so much by the hustle and bustle of daily affairs and the lives of those around me as it is by my own body. While my friends and family must manage the challenges of full-time jobs, raising families, and social activities, I must manage the frustrations of dealing with the ups and downs of living with a chronic illness. As they make plans for how to manage their time and various events, I am unable to make reliable plans due to the unknowns and changes within my health multiple times throughout the day. My schedule includes ensuring that my medications are taken on time, every time, and within a certain number of hours of each other. My daily routine will never be void of medical treatments, potential complications, and reminders that my world is beyond average. Unlike a vacation from work, school, or other events, I will never be able to take a vacation from my life as a multi-visceral transplant recipient. My life is dependent on the accuracy in which I follow a certain regimen. I must avoid many things that others enjoy such as gardening, certain foods, specific types of environments, tattoos and piercings, and certain jobs due to the chances of picking up infections. I have to be very conscientious of my surroundings and ensure that I avoid or limit the amount of exposure I have to certain people, animals, and diseases that may not affect the average person, but could severely threaten my life and health. An infection in me is not treatable by a simple oral antibiotic, but must be treated aggressively with IV antibiotics in order to help my body be able to better fight it off. Being a transplant recipient makes everything more complicated and dangerous.

In spite of living in a world which is filled with pre-cautions, uncertainties, and a daily focus on doing my part to stay well, I cannot live in a bubble. I refuse to live in a bubble. In spite of the fact that I recognize some of the things that I do to enjoy life could potentially be dangerous, I choose to do certain things anyway. I am not allowed to own a guinea pig due to the risk of developing rotavirus. However, I have had guinea pigs since the age of nine and my life would be incomplete without a little pal. I take risks when working around kids who may be carrying around an infectious disease that I could easily catch, but then my involvement with my church would not be in the positions in which I most enjoy and have been gifted to serve. It’s all a matter of weighing the positive and negatives, the pleasures against the risks, and the advantages with the disadvantages.

One of the hardest things for me to deal with is trying to acclimate myself into more of a normal world as my health has improved, while it is nowhere near to the point of being independent in what I do or free from a life of health complications and treatments. It is tough to deal with what is considered to be a “silent” or “invisible” illness. While I am glad that I often don’t look sick and my health problems are not overtly apparent to the public, it is also difficult to deal with the discrimination, lack of understanding, and blank stares of battling serious chronic illnesses while looking perfectly normal. Although undoubtedly I have many challenges, people often don’t understand the measure of impact it has on my world because I am able to walk, talk, breathe, drive, and generally have a positive approach to life and do normal things while rarely seeking assistance or accommodations unless absolutely necessary. On the surface, no one would even know the struggles I have within or the level of pain that I deal with every day. I make an effort to push myself in spite of being weak, tired, sore, or nauseous. In fact, sometimes I push myself to the point of knowing that I am physically no longer safe to continue what I am doing, but rather than seek help, I often work through my own solution, wait it out, or continue anyway. I recognize that these are not the best avenues to pursue in many cases, but it’s tough because I want people to see me as being normal and I want to do everything on my own.

I have discovered that although dealing with a chronic illness in my last few years as a pediatric patient and through college, that it is actually more difficult socially to manage it now. Upon meeting someone for the first time, the natural first question is: what do you do for a living? It’s an impossible question to avoid! Everyone works…right? It’s a great and normal conversation starter in most circumstances, yet in my case it stumps me almost every time. Immediately, any efforts I may have made to postpone or avoid being labeled as having a chronic illness are destroyed. While I am passionate about what I do and proud of the accomplishments I have made in life to this point, there is no way getting around explaining why I do it. And, to top it off, I don’t do it for a living. At the age of 22 and straight out of college, I was unable to work full-time and was approved for disability within two months of applying. But needing something to occupy my time and help others in the aftermath of months of depression due to the postponement of my dream, the pursuit of my graduate Art Therapy degree, I started what would become the world’s largest support group for gastroparesis, G-PACT. Within one year, I had used that to start the only non-profit in the world dedicated to fighting gastroparesis. Eventually, because the two conditions frequently come together, we expanded into chronic intestinal pseudo-obstruction. We recently added colonic inertia to each out to even more in need.

Every time I am approached with that dreaded question regarding career, I try to respond in the most positive light possible, yet there is no way getting around the immediate identification of me as someone who is suffering from a chronic, very debilitating disease. My typical response is that I am founder and CEO of a non-profit organization which I run from my home for gastroparesis and chronic intestinal pseudo-obstruction, two conditions from which I suffered which led to a five organ transplant in March 2006. Although I try to leave it at that in the early stages of meeting others, naturally the term “five organ transplant” brings up even more questions and leads me into a very complicated, albeit ice-breaking, conversation. There’s just no quick or easy way to explain what leads up to a five organ transplant or any portion of my very long and complicated medical history! This question is then usually followed by the question of my living arrangements. It is difficult for me to explain that I am unable to be independent and live in an apartment in the basement of my parents’ home. It is often difficult to connect with others in my age group because their world is so different from mine. They are able to talk about their careers, often marriage and kids, rent or mortgages, co-workers, and other social events. These things are unfathomable to me! I can’t even begin to understand how a person can hold down a full-time job, come home to care for a family, attend and/or organize social functions, and keep up with regular household chores and shopping. I feel as if I have accomplished something in a day if I manage to spend a couple hours focusing hard on one project, or making a trip out to run a couple of errands.

Although I try to step into their world and understand what their lives are like, it’s impossible for me to relate so therefore I am often left speechless and unable to carry on a routine conversation. At the same time, they are unable to understand where I am coming from and that the world I live in is impossible to step out of. While a career, family, and common, everyday activities dominate their lives, my life is filled with things that few can understand. It can be a one-sided conversation. Since it is much more common to do the things that they do, I can connect to an extent with their stories, but when it comes to sharing my own experiences it’s just not the same. I often don’t know how to connect and it makes it difficult to get to know me for who I am, as an average person, just coming from a completely different perspective and a totally different life experience. It impacts everything and there is no way around it. I often feel left out of conversations because I am unable to talk about or understand things that are so commonplace for most people, yet they are also unable to relate to the things that are so commonplace for me. As much as I strive to maintain normal conversation and limit my health experiences, it is such a big part of my life and a huge part of who I have become, what I am passionate about, why I do the things I do and say the things I do, and why my lifestyle is as it is that I don’t know how to get around it. I certainly can’t go back and change those circumstances in order to achieve a better sense of normalcy, and there’s nothing I can do now to escape the realities of what I deal with on a daily basis and the limitations I still have. I often find myself desperately trying to dig up stories of times when some event in my life happened that was within the realms of normal...a college memory, an internship experience, or a G-PACT issue that puts me in the career path in a sense, but unfortunately most experiences are still tainted by the 18 years that my life has been so wrapped in the medical world. I can’t separate them. No matter how hard I try, I can’t. It’s all part of me and who I have become. Yet, for some reason, many people tend to think that I should be able to separate the two. It’s only natural for my jokes, comments, and conversations to somehow involve that aspect of my life because it has such a profound influence on everything that I do.

Not too many people my age understand the feeling of losing very close friends, most of whom have shared the same experiences as I have. It’s a scary feeling to watch as some of my closest friends who fought so hard with me continue to struggle, and in many cases, lose the battle. Over the years, I have dealt with the loss of several very close friends due to transplant related complications. No one but those who have been through the transplant process can understand the fears that I have and how I must manage those fears and frustrations on a daily basis. Although I am very optimistic and see my future as bright and fulfilling, I can’t help but deal with strong emotions when any situation goes awry in my life or that of my transplanted friends. I don’t dwell on these things by any means. I make every attempt to avoid looking to the past as much as possible, but I certainly can’t separate them from my life.

Having a transplant changed things for me. I see this life as separate and completely different from my previous one, yet they are still connected. I have different issues I must battle and the entire transplant process has brought me to a greater understanding of myself, God, love, my family, friends, overall suffering, and the incredible need to fight regardless of the odds and discomfort involved. However, pre-transplant complications led to the need for a transplant and it’s all part of the big picture. I often feel as if I am ten years behind my peers in many ways because I am unable to talk about regular life issues beyond my college experiences. Sometimes I feel as if this makes me immature, but then I recognize that I am far from it. I may not be able to relate on levels that society places in front of me as a way of measuring maturity…the expectations of supporting myself financially, being totally independent, and caring for a family, my maturity is far higher in other levels of life and understanding and certainly my lack of independence is not related to anything in which I have any control.

I know how to handle complex challenges and decisions that others my age have never even considered. I’ve had to write an advance directive, a clear indication that I recognize my mortality at any time. I’ve had to push through pain, near fatal infections, cardiac arrests, surgeries, the inability to eat, living without a small bowel for a year, and the fight back from a 16 ½ hour five organ transplant and its complications just to achieve the measure of health that I have today. I have had to learn how to manage all the emotions, frustrations, and fears that come with the whole process and dealing with much of it without the full understanding of those around me. My battle with that continues as I do suffer the effects of some PTSD as a result of some of the medication problems I experienced post-transplant that left me unable to sleep, speak at times, think, remember, control, or care for myself. I was terrified, and what added to the trauma of this was the inability to express myself during that time and describe what I was experiencing to those who were trying to care for me. In spite of that, I have been able to overcome most of those memories and advance my life forward in an effort to focus on the future. While I am still haunted by those experiences, I have figured out how to cope when the emotions and fears hit and now I am able to lessen the impact they play in my life. 

These experiences have given me wisdom beyond my age as I am able to understand the challenges that come with managing not only physical problems, but the associated emotional, psychological, and spiritual challenges that so many people with chronic or life-threatening illnesses face. This has greatly enhanced my ability to work with the population in which I do. Although effective as a leader and role-model in G-PACT before, my effectiveness has been greatly enhanced by my experiences and my drive to fight for others has become even stronger. I don’t get paid for what I do in monetary terms, but I am paid every day that I am able to make an impact on the life of someone who is struggling and in need of knowing there are people out there who truly care and are fighting for them. My value as a human is not based on how much I earn, but how much of a difference I make in the lives of those around me.

Battling what I have and dealing with a future of unknowns never gets easier. It never will. I recognize that many of the medications I take and treatments I go through have consequences years down the road as well. It’s difficult at times to know that what is keeping me alive at this point may eventually lead to further complications. But I don’t let that rule my thinking or way of life. I can’t. Somewhere there is a family whose child died during an unexpected, catastrophic event and made the decision to give life to someone else during a time of mourning. I can’t let that family down. I have always felt it is my obligation to do what it takes to make that family proud to have given this gift and to see how their child has made an impact on the world.

The things that make my life so difficult are also the things that make me so passionate about life. Often, people do not understand why the littlest things are so exciting to me…an hour in the Jeep with the top off, spending a couple of hours with a friend, volunteer work doing anything for even an hour or two, and the need to cheer people up through any means I can think of, even if as simple as sending an online greeting card or an inspiring message through Facebook! I enjoy meeting people whether online or in person and just getting to know them. It means the world to me to go out with anyone at all to eat or just hang out and chat. The ability to travel and represent G-PACT is exciting because I was unable to do that for years. I love being able to represent thousands of people who are unable to represent themselves. I enjoy things in life that many people dread or try to avoid. Even things I don’t enjoy I often find that I don’t mind doing because I have the capacity to do them…I am alive to do them. There are so many things I want to learn now that I never had an interest in before. I want to travel to so many places! I love life and am grateful for every day that I wake up!

Although it is trying to know that in spite of my efforts to the contrary, I will never be seen as “normal." I recognize that I have been chosen for a reason to take on this task. My love and passion for God has grown and because I am unable to completely step out of my world and reality, it has given me many opportunities to share how the Great Physician has intervened in my life and given me more chances in life to serve Him. My story has encouraged others who continue to fight that there is hope as they have watched me come from the brink of death, unable to get out of bed, and not expected to live through the transplant, to someone who has recovered and found a way to fight back in a way that helps not only me in my attempts at coping and recovery, but all of them as well.

I recognize that not only do I owe it to my donor family to utilize every opportunity I am given and seek out others that become available, but I also owe it to my God who has clearly kept me in this world for a time because of some great purpose He has. Although His purpose is not always clear and my world is certainly filled with questions, frustration, and an ongoing struggle with inner thoughts, feelings, and fears, I know there is a purpose and it’s not in the future. It is something I am working towards fulfilling every day. So while I continue on in this constant battle of ups and downs, facing the unknown, and maneuvering within the unique and misunderstood world in which I live, I try to maintain perspective and recognize that I am not to be defined by what society deems as normal, but that God has given me a special environment in which to live and operate and a particular focus and gift in life that only those with my circumstances are given. When feeling frustrated by the inability to live up to society’s “norms” and not feeling fully connected with the typical world, I force myself to focus on how the world that I live in would be different if God had not given me the opportunity and abilities to work within it and make an impact in any way possible.

Monday, September 24, 2012

Just Imagine...

By: Carissa Haston
G-PACT Founder and President

Can you imagine never being able to eat again? Hooking up to IV nutrition or tube feedings every day in order to live? Carrying your nutrition on your back all day or being attached to a pole all night? Or, simply having to "survive" on chicken broth, Ensure, and small bites of food all day long? And in spite of that, still dealing with malnutrition, dehydration, weight loss, abdominal pain, nausea, and vomiting on a daily basis?

Frequent trips to the ER and hospital become routine...just a part of life. Social activities are non-existent because most of them involve food. If you do go out, you end up ordering water, maybe a soda, and pulling that pack of crackers out of your purse to nibble at. You feel fortunate that you are even capable of keeping that down, realizing that many people in similar situations can't. Making plans is a challenge. You may feel well and up for an outing, but then while out the symptoms attack and a planned fun-filled evening becomes a drag very quickly. That's what life with gastroparesis and intestinal pseudo-obstruction is like.

These conditions are so poorly understood. They are so hidden that people often don't believe they are real or are not as serious as they actually are. Although difficult to understand, patients suffering from GP and CIP may look completely healthy. They may drive, work, shop, go to church, take care of a family, and look great on the outside. Their color may be nice, they may look strong and energetic, and they may appear to be feeling well. Yet, the turmoil churning within them is by no means normal.

Remember the last time you had the flu. After 24 hours of nausea, vomiting, perhaps diarrhea, and aches and pains, you couldn't wait to get back to work and your normal activities. As you tried to return to your routine activities, however, you did notice you felt weaker than usual. It was more challenging to get things done because you had a day of surviving on toast, crackers, and soup...not exactly a champions dinner!

Now, take that day and multiply it by years. Add medication, medical procedures, hospitalizations, chronic malnutrition complications, invasive treatments, surgeries, and additional illnesses that develop over time. You are getting closer to understanding what life with GP and CIP is like, but you are still not there.

On top of the physical issues, because the conditions are so poorly understood, people with GP and CIP often have to live with the challenges of stereotyping by society. It is often believed that patients are exaggerating their conditions because they don't "look sick." Others believe those who suffer really just have an eating disorder and use a "mild" condition as an excuse for not eating well. People simply don't understand that a couple sips of soup can send one's gut into a frenzy and result in hours of nausea, abdominal pain, and vomiting. Sometimes this lasts even for days. One wrong bite of food can result in a bowel obstruction and trip to the hospital for an NG tube for suction or surgery to remove the blockage. There are no cold and flu treatments to help symptoms or treat the conditions at all. At best, patients can try some anti-nausea medications with nasty side effects, or drugs that are so expensive insurance companies only provide 12 a they have to decide which 12 times a month they are sick enough to take it. On top of that, any drugs that may help are pulled from the market and no longer available. Once that is removed, even if restarted through compassionate clearance programs, they never quite work as well again. But the odds of getting on that program are slim to none. They feel like everything has been taken away from them...not only health, a normal life, food, and even friends and family who jump ship, but the only treatment that keeps them even somewhat functioning.

Think back again to the day you had the flu. You probably did not want to lift your head off the bed or couch. You felt too weak to make it to the bathroom. Every time you sat up, you felt your head spin and the nausea increased even more. Finally, it was a battle of determination to force yourself up and walk to distance to the bathroom. While you were up, you tried to grab as many items as you needed so you didn't have to get back up again for a long time. By the time you get back to bed, you were so weak and wiped out that all you wanted to do is sleep or watch TV. But you couldn't get your mind off the nausea. It was so overwhelming that you curled up into a ball on your side and just waited for it to pass. You took flu medication in hopes of sleeping it off and had hope that tomorrow would be better.

People with GP and CIP don't have that hope that tomorrow will be better right now. Each day varies and some are better than others, but inevitably the bad days will always come back. There are limited options to treat symptoms, but they don't work well. Patients are basically told to "live with it." In some cases, it can't be lived with. While most people with GP get by on what is available, because there are no other options, quality of life is certainly very poor. Many survive on less than 1,000 calories a day, severe weight loss, disability, tube feedings, IV nutrition, medication with nasty side effects, and a life full of invasive medical treatments and hospitalizations. GP and CIP are not just simple illnesses which can be cured through diet changes, medication, or surgery. They do not mildly impact life. They have a profound influence on every daily activities, regardless of severity. There is no escape. Is this the kind of life a person wants to "just live with?"

There are also many situations in which living with GP and CIP are no longer an option. In severe cases, chronic malnutrition takes over and people are unable to survive the trauma on the body. The body often quits absorbing, organs shut down, and the liver may fail for those who have been on long term IV nutrition. Veins become inaccessible and there is no way for them to receive nutrition. Some who are fortunate enough to be aware of the option and be eligible may pursue a five organ transplant as a last resort to stay alive. While this can be miraculous and life saving, it doesn't come without its own complications for life. Individuals who reach this level of severity have become desperate. There are no options. They either risk their lives by going through a transplant, recognizing that even if they make it to the transplant and out of the OR, they face a lifetime of complications and possible organ rejection. But the only other option is starvation. There's not really a choice when you get to that point.

Living with GP and CIP is hard to describe. The best patients can do to help others understand is to tell people to consider what it would feel like to have the flu, every single day, and the impact that would have on your life. But then you have to throw in additional health problems and the stereotypes, comments, and claims by others that what they deal with is not real and not worthy of attention. Because they don't "look" sick, family and friends who don't believe put a wedge between them or completely leave, believing that the person is trying to use a mild condition to "benefit" from resources such as disability, have an excuse to get out of unwanted duties, a way to receive special parking "privileges," and other accommodations at work and school. They are often looked at oddly when forced to admit they are on disability because of a "stomach" problem, can't lift a box of sodas into their cars because they are too weak, get glared at because they park in an HP spot but get out of the car walking, and dealing with other colleagues and students who are jealous of the accommodations received to make life easier to live and adaptation into society easier.

GP and CIP need more attention. People don't understand what it is really like to fight these conditions and what daily life is like for those who suffer. They are downplayed as simply being conditions that can be controlled if "you would just eat correctly and avoid certain foods." While in some instances this is true, there is a very wide spectrum to the level that people die from these conditions as well. If not to the point of dying physically, many are unable to truly "live" at all as GP and CIP zaps the life out of them. Note how long it took you to recover from just a 24 hour flu. Then realize that in GP and CIP there is no recovery. There is no in between. It is a daily battle, with ups and downs, unknowns, and a life full of complexity and misunderstanding. Try to step into their shoes for a short time. Next time you have your head in the toilet, imagine life like that every day. Be thankful for what you have. Be thankful you will recover and life will return to normal. And remember those whose lives will never return to normal. Give back. Help them fight. Support them. Try to understand. Let them vent without judging them. Encourage them. They often lack self-confidence because they have either been judged so much or feel as if they are incapable of accomplishing important things because of being ill. Also, realize that you are dealing with some of the strongest, toughest, people you will ever meet. Thank you for taking the time to read this and step into the lives of those suffering from GP and CIP for a short time.

Gastroparesis (GP)

I'll define Gastroparesis,
so more people will know.
It's where a stomach is paralyzed
or it empties too slow.

Some food comes up often,
with nausea and pain.
Some stomachs get bigger,
with food it retains.

Stomachs rock and roll
in people with GP,
Its like a ship tossed about
on a wild, stormy sea.

Often Gastroparesis
is not understood,
Those with the symptoms
would stop if they could.

Some doctors do know
when patients are ill.
Others do not believe
when symptoms are real.

They need to be educated,
to order the right tests.
They need to find treatments,
that would help best.

The devastation of GP
is so hard to endure,
More research is needed
so they'll find a cure.

by: Meggy's Grandma
Megan Kondilas is a patient with GP, moderator of G-PACT's Gutsy Teen Lounge, and volunteers for G-PACT in other ways

Please pass this on, so others can read :)

Thursday, September 20, 2012

My GP Story

Guest Blogger
Melissa McElfresh

Let's roll back the clock. About 5-6 years ago I was having pain/bloating when I drank water, even a sip. I told my Primary Care Doctor and she didn't think it was anything to worry about. We live on 5.49 acres, with a well, so she told me to test it. It was fine, as always. I complained every year (just ordered my medical records and these complaints are not in there). Then 2 years ago I was having burning in my chest and after I ate, my pants didn't fit, then I got very tired. I started lying down during my work day, since I could not function well. Again, the next annual exam, all she told me was that I have GERD and to take Prilosec. I did and it didn't help. I was on and off of that for a year. In the Winter of 2011 I had so much pressure on my chest, I thought I was having asthma attacks. I would take my rescue inhaler and allergy pills, but it didn't make it go away. Since birth till now, these are the only issues I have ever had (but eczema) .

March 2012 I gave in with a burning in my chest I was not sure if I was having minor heart issues or not. My Primary Care doc didn't want to help and wanted me to go to ER. Since that is a $$ Copay, I went to an Urgent Care. I waited for 90 minutes to fill out paperwork and as soon as they saw my reason to be there (heart pain), I was admitted. I felt kind of bad for that, but knew I needed help too. From 2p until 6p I was in a little cube being tested on. All tests came back fine, no heart issue, still no high blood pressure and I am not diabetic (my father is, so I watch closely). Again, they felt it was GERD and doubled my dose plus added another dose per day to take.

I followed up the next week with my Primary Care doc, she had the 'results' and I was still having the stabbing pain in my chest. She then ordered an ultrasound. They checked every organ, I do believe for the $400+ it cost me! My insurance would not cover one cent of that!! Yep, that test was fine too. At this point my throat is burning too. So she thinks it is all the Advil/Aleve I take for shoulder pain (oh, I was in an auto accident on the freeway about 10 years prior to this and still have shoulder pain and sciatica … rear-ended on the freeway and my car was pushed into a cement barrier). So, esophagus damage was her next guess. So, I was sent to a GI Office for a scope. Prior to the scope I asked to be tested for gluten intolerance while they were already in there. I do not have a blockage, the stomach was clean, no inflammation of the esophagus, no silica disease and no signs of GERD. At that point I stopped taking the pills, as I was unable to have a bowel movement on my own.

It is now May 2012 and the GI Doc wants to do a Digestive Study (we all know this as the radioactive egg salad sandwich test). The results were 4 hours for me to process that stupid sandwich. My handout said the 'normal' range is 60-90 min. Hence, I have Gastroparesis.

I went to her office to find out the results. She then told me what I have. Gave me a piece of paper that was a print out from Mayo Clinic on GP. All it said was 'low fat, low fiber, small meals'. It said to avoid red meats, fresh fruit/veg, and other items. But it never said what I can have. She said, 'follow this and see me in 6 months'. What the ??!!

When I got home and picked up my jaw, I stated searching the internet for help. I talked to my concerned mother (retired RN) and she said 'are you sure?'. After that she didn't talk to me much about it. We are now in September 2012 and she is now speaking to me about my GP as she has seen my struggles. I educated my husband to the best of my ability, since I am learning every day. He understands and is very supportive. He will pick up things at the store that he feels I may be able to eat. Since my co-pay was already maxed out, I wanted off my birth control pills, so I elected to have my tubes tired. Family decision and one we talked about for many years (money was the issue). I read that maybe hormones have a roll in GP and since I was always sick on the birth control pills, might as well. It has not been the full 3 months yet to check and make sure the Essure procedure worked, but I am happy I did it. However, my GP is not so happy. I got worse after the procedure and have not bounced back. I would say I am 10 weeks into the 12 weeks. But even my co-workers have noticed I am sick more now. I had a Depo shot before the procedure and it should wear of soon. So, I am unsure if it is the hormones in the shot now, or if it is really my GP.

Every day I fight nausea. At times it and being dizzy are so bad I do not go into work. The days of pain seem to be gone, just a constant burn on my right side. I can't get it to go away unless I take an Advil/Aleve for a headache. I get them so bad and they turn into migraines. So, I wait to see if it will go away on its own before I pop a pill. Once I do the pain in the stomach is very bad (until the pill kicks in), doesn't matter if I have anything in my stomach prior. But, since I am only 35 I do not want to start down the road of pain meds.

My job allowed me to tap into next years vacation to use for my sick time. I was missing so much work and then ran out of time to use. They offered me part time position and we cannot afford it. At this point we are trying to sell our house, but are not having any luck. No matter how low we go. This is our only saving grace. I cannot keep missing work and I am unable to go some days.

The GI Doc said I need to take Dexilant (she is still adamant that I take a PPI). I used her free pills and then took my Rx to get filled. $150 for one month. I don't think so!! I told her and she gave me another one to take. I am, but it still does not make the nausea, pain, burning or dizzy spells go away. She gave me Zofran for the nausea. I was on it for about a week, then didn't take any more as I was not feeling nausea. During the time I took it I was off of work for about 4 days. I could not seem to get past being so worn out, had to take breaks to go to the mail box (used my inhaler … didn't help). I felt sick one morning and took it, since I was required to be at work that day. While driving to work my heart started to race. I made it to my parking lot, gathered my stuff and walked to work. I had to take little breaks to walk there and though I was going to throw up when I made it to door. My co-workers wanted to rush me to ER. I told them I think it is the Zofran. I looked it up on the internet and sure enough those are some of the reactions I can have. Tested it once more and same thing. The pills have been destroyed and the doctor was notified. She would not give me anything else for the nausea. So on a bad day I went to the store to find Bonine (like Dramamine). I took the one tablet (good for 24hrs) and felt like crap! I could not function and again did not go to work. I slept almost the full day and most of the next. Why would a person take this for sea-sickness??!! 

At this point I am out of options for what else to take. I do not want to try Reglan. Just want the nausea to go away. After 6 months I am getting use to the side pain. Only the days that I think a person is stabbing me, that is a different story. It is my hope that the nausea is tied into the dizziness and a pill can help with it.

My GI doc wants to see me in a few weeks. Little does she know I found a new GI doc to see. This gal came from WA DC, been out of school for 3 years and is specializing in GP. I get to see her on October 10th. At this point I am excited for a new person. I do not like the current GI doc, rather PA. Maybe this one can give me some ideas. I even would like to see a nutritionist. Since I consume so few calories (maybe 500 in a day... less on bad liquid only days). I did the best I can and have not dropped any more weight. To date I have lost about 15 lbs. My ribs are showing and I don't look that great anymore. Of all things, I lost my breasts. Bra's don't fit either. And pants, forget that if I am bloated. Can't wait for winter and to go to work in a dress when I am walking in the snow! Oh, and my hair is falling out. I take vitamin supplements, but guess I am lacking something else. I am sure most of you can relate. I don't ask for a pity party. This is my new life, so it seems. I just need help and guidance in finding what works for me. I do a food journal, but this trial-error thing is getting old.

Thanks for reading my initial story.