My Life With Chronic Pain

Living with Celiac Disease means living at a higher risk for other autoimmune diseases. I, unfortunately, have two others: autoimmune pancreatitis and rheumatoid arthritis. I am younger than the average RA patient; this disease does not discriminate and can still strike at most any age. Without a doubt, RA is the hardest condition that I have to live with each day. It also seems to be very misunderstood by those around me. For those who may not know about RA it is an autoimmune condition that causes the body to attack it's joints. This causes inflammation and pain in the joints which and can lead to permanent joint damage. It can affect any joint from your jaw to your toes; it also causes exteme fatigue and muscle weakness. The disease often goes into remission where no symptoms are present, when the disease is active, it is referred to as a flare.

It's easy to read a description like that; however, the ins and outs of the disease may not necessarily sink in. Having to live RA day in and day out is a very trying feat. The first symptoms I showed were what I called "sausage fingers". My hands were swollen to twice their normal size and I could hardly hold onto anything. Simple every day tasks such as tying your shoes or even holding a fork were unbelievably painful. Slowly I started to notice pain and swelling in other joints. Walking became painful, stairs were excruciating, even chewing hurt. At the same time I became extremely fatigued. Fatigue is not just a symptom of not getting a full eight hours of sleep; and I get consumed by it. It makes me not feel like doing anything. I don't even want to get out of bed to eat, I just want to sleep. Getting up and dressed or doing anything productive seems impossible.

Since my RA diagnosis a few years ago, I have had more than one severe flare. One in particular that stands out; it was the first time reality really started to sink in... That the disease was limiting my ability to function like a normal, healthy person. After church on a Sunday morning I went with some friends to Outback Steakhouse for lunch. I was starving and ordered my favorite salad. When the food arrived I tried my best to eat but I just couldn't. The silverware was to heavy for me to hold, my fingers were in excruciating pain trying to stab pieces of lettuce. It took all the strength I had not to completely lose control while I was sitting at the table. I don't think I even ate ten bites of salad before I gave up. By the last bite the fork was so heavy and my fingers were hurting so bad it made my hand shake; my bite barely made it to my mouth. I waited until I got to my car and then the tears came. I felt frustrated and hopeless.

It is events like this that are overlooked when discussing rheumatoid arthritis. Being in my twenties and having the outward appearance of good health makes it hard for some to grasp my condition. I have had to learn that when I start to get fatigued or when I start to have pain and swelling, that it is essential for me to slow down or even stop what I am doing. For some people it gives the appearance of being lazy when in reality, I am quite literally preserving my mobility. If the damage my body is causing to it's own joints gets bad enough I will loose function of those joints. Joints like fingers, wrists, hips, knees, and ankles. Loosing function of those joints meaning I can loose my ability to write, walk and even grip things with my hands. Considering the fact that the disease began at such an early age potential loss of mobility will also strike at an earlier age if the disease is not controlled.

Part of my treatment plan to prevent further progression of the disease are immune-suppressants. One particular medication is methotrexate, this medication requires giving myself weekly injections. Methotrexate, in larger doses, is used to treat leukemia; the side effects are similar, though not as extreme in lower doses. This is included but not limited to hair loss, brittle nails, and being more susceptible to other infections. I have been on it for two years now and I still get hand fulls of hair in shower after my injection. It has also caused me to have acne worse than I ever had, even when I was in high school. It is severe enough it has begun to scar my face. Not many things are more embarrassing than terribly blemished skin at twenty-five. My skin even starts to bleed if I accidentally scratch my face.

Living with rheumatoid arthritis is a daily battle. Sometimes it's a battle just to get out of bed in the morning. And everything from the symptoms to the treatment cause a host of pain and frustration. The day to day pain can be unbearable at times. It's triggered by everything from stress to the changes in the weather and the only thing that can be done is to suppress the immune system and treat symptoms. My general prognosis is years of medications, pain killers, surgeries to remove joint deformities, joint replacements, and canes and wheel chairs. I already have joint damage in my right thumb that will require surgery to correct. For now I have put it off until I loose complete mobility in my thumb, but it is inevitable. Living with RA doesn't usually lead to a bright happy future. The harsh reality is that it is part of the long painful road that I call life.

2 Essentials to My Survival

When I wrote about support systems a few weeks ago there were a couple things I left out that I think are essential to survival in any situation in life. It seems in today's world both have become taboo subjects, but I would not have survived without either. To add a little bit of background, when I was still working, the company put me in a horrible situation. I had decided to report harassment and as a result was ostracized and bullied to the extreme. So much so, that my doctors and I agree, the stress I was under was more than my body could handle. I was put on long term disability which has now resulted in my approval for social security disability. I had people in my life supporting me through all this but two things specifically allowed me to survive.

First and foremost was my faith, and the faith of those around me. When you're struggling with anything in life, from stress to chronic pain, you need a positive outlet. When I was living in Colorado, a few months after my Celiac diagnosis, I spent three separate weeks in the hospital between Thanksgiving and New Years. During that time, I can count on one hand the number of days I did not receive a card in the mail from my parents’ church in St. Louis. These people had never met me before, and had only known my parents for a few months, but I received over 100 cards in about a six week period. I often think about that and wonder what people do when they don't have that type of support system in their lives.

It was during my work situation that I came to understand what Wednesday night Bible studies were for. I was so stressed out, getting sicker by the day; on more than one occasion I thought I was beyond my breaking point. But I had a place to go where everyone knew my name...everyone was happy to see me and genuinely cared about me; this time brought fresh breaths back into my life. I had a place to go for just an hour or so in the middle of the week where I could forget about the hopeless, upside down world I felt my life had become. It was one positive in a never ending ocean of negatives.

The second resource I recommend is seeking professional help. This especially seems to be a huge sore subject for people. As if seeing a psychologist makes you weak. To be honest, I used to carry that same belief and it was the doctor that gave me the Celiac diagnosis who encouraged me to go. She said "no one can go through years of illness followed by an immediate, total lifestyle change and do it alone." I was a little hesitant to go but found that seeking a neutral third party outlet was incredibly beneficial. When you share your fears and stresses about health and life with friends and family you typically get the same response: a "you can do it" attitude and a lot of "I know it's hard, but hang in there". There isn't anything wrong with that, in fact it is our job as loved ones to provide unwavering support. However, having someone to vent to that you can share your biggest fears and concerns with who isn't going to give you a hug and say "don't worry about it," is crucial. We need someone who is there to give a little perspective.

Through my illness and work situation, I have gone back time and again to talk to someone to gain perspective. It's not something I really even shared with more than four or five people, but it was central to my survival. I've learned ways to handle situations; like when you feel you're at your breaking point every time you open the refrigerator or walk down the aisle at the store not finding anything to eat because you feel trapped by your diet. Or, how to keep your spirits up when you wake up in the morning and before you even get out of bed your joints are aching and throbbing. And, even how to cope when you're stuck in what feels like a hopeless situation and you need stress relieving survival skills.

I would encourage everyone, regardless of situation, to reach out to both support systems. The skills you learn extend well beyond coping with serious illness or stressful situations. Learning to manage the stress in your life can considerably alleviate illness as well! Everyone needs a little help at some point in their life and getting that help and learning those skills can only benefit you.

Not Just an Intestinal Disease

Celiac Disease has the following stigmas; one, that it is purely an intestinal disease and two, that it is just a severe allergy. Both are quite simply, untrue. Celiac is an auto-immune disease with symptoms that affect a wide variety of body systems. From dental to psychological to gynecological...this disease can quite literally take hold of your life. Celiac Disease has been linked to other conditions including autism, diabetes, and other auto-immune conditions. A Celiac diet is very different from an allergy diet. Some food allergies are mild and the food can be consumed in small portions; this is not, at all, true of a Celiac, gluten free diet. Severe allergies with small consumption can cause anaphylaxis and death. In contrast, Celiac disease isn't likely to directly cause death; more likely than not it will cause intestinal cancer, typically lymphoma.

These stigmas have caused a whole lot of misunderstanding about the disease. From my personal experience, Celiac has caused all types of symptoms and complications. Successfully coping with the disease and the diet is dependent on having a good understanding of what is going on in your own body.

As I have mentioned in a previous posting, I am convinced that my Celiac disease became active when I was fourteen. I had been having chronic sinus infections and eventually had to have surgery. That surgery, I believe, is what triggered my Celiac to become active. I didn't have intestinal symptoms until six years after that surgery, but my life became very different in other ways.

I did continue to struggle with other health problems, to say the least. After my sinus surgery, instead of chronic sinus infections, I had repeated bouts of strep throat and eventually became a carrier. These bouts went on until I had my tonsils and adenoids out at sixteen. After my strep, I had repeated cases of bronchitis until they removed my lungs. Ok, they didn't remove my lungs, but there was still a pattern! In addition to my sinus infections, strep and bronchitis bouts, I also began suffering from endometriosis and hypoglycemia. I saw many different doctors for the endometriosis, all of which, wanted to perform surgery, as this is the only way to officially come to a diagnosis. However, I put off the surgery until I was twenty-one and had a doctor who I completely trusted and who I was comfortable with. In high school it wasn't long before the school nurse and my mother got to know each other quite well. It even got to the point that when I got sick they would send me home without permission because they knew my situation. There were other little problems I had as well. I could not grow my nails out, they would break and flake off. My hair was damaged and brittle and wouldn't take color very well. These things seem very little in the grand scheme of things but they were very bothersome and frustrating for me.

When thinking about those days, nothing sticks out more to me than the mental or psychological problems. Part of the reason I am convinced my sinus surgery made the Celiac active is because afterwards, for the first time in my educational life, I began to struggle with most every subject. I remember countless occasions from the eighth grade through college when a teacher or my parents or someone would get on to me saying things like, "you're smarter than this" and "you're just not applying yourself". And on most of those occasions it wasn't that I was not trying, it was that I really did not understand. I know this doesn't explain away all the things I did growing up, but nothing frustrated me more than everyone assuming I was lazy or didn't care. To be honest, by the end, after years of going through that frustration, I began to not care anymore.

In hindsight it's easy to say we should've known something was going on. But even eleven years ago not much was known about Celiac, and the fact that I had no gastrointestinal symptoms makes the thought of reaching a diagnosis back then unlikely. I have noticed that since starting my gluten free lifestyle I retain knowledge and can problem solve much better than I ever could before. It seems incredible to me that something as simple as a grocery store doughnut could cause such a wide variety of health problems from brittle hair to cancer. My doctors have told me on more than one occasion that I am stricter on my diet than I need to be. After thinking back on my teenage years in the manner I just described, I think anyone would be just as strict!