Thursday, June 18, 2015

I’ve been keeping a secret…

For the past few years, I’ve been living a lie. I’ve been reluctant to share my experience with the world, only providing an “edited version” to my family and close friends.

The truth is this: I’ve been sick. I’ve been so sick that for the past couple of years I have been homebound for the most part; only going to a select number of events, when I am able. 
Although it’s completely irrational, I felt somehow embarrassed to admit to this. It was as though I was viewing my illness as a personal failure. Sick shaming… I never imagined that I would become so debilitated. 

I don’t know why, but I somehow thought I could beat anything that came my way. I figured that if I was ever faced with a serious illness, I would be one of the people that turned it around. I would change my diet, practice yoga and meditation, positive visualization and whatever it took and I would get better.

That plan might have worked, but it’s complicated. Until very recently I didn’t have a definitive diagnosis to explain my long list of symptoms. Since it was the predominant problem,  I had focused everything on healing my painful abdominal issues. Several years back I started experiencing attacks of Diverticulitis; an inflammatory bowel disease. These attacks became so severe and life threatening that I would end up hospitalized for several days on intravenous antibiotics and pain medication. I was advised that the only answer was to have colon resection surgery and remove the diseased part of the colon.In August of 2013 I had 2/3 of my colon removed.  It was (has been) a tough recovery and I kept waiting to feel better. 

Unfortunately I did not get better. I got worse. My abdominal issues multiplied, my unrelenting fatigue increased, my migraines became an almost daily occurrence, frequent vertigo, hair loss, a bizarre condition that causes my tongue and mouth to burn from morning to night, sinus issues, sun and heat sensitivity, morning chills with low grade fever, strange rashes, dry eyes, mouth, skin…it goes on and on.

With my growing list of symptoms, I started to worry that people would think I was a hypochondriac. I felt that perhaps my family and friends thought I had become a chronic complainer. To make matters worse, every specialist I have seen, since the surgery, could find nothing to explain my increasing ailments. My case was tossed in the trash bin that they call Irritable Bowel Syndrome (IBS).  That is a medical code for “We don’t know- we give up”.

Life as I knew it had slipped away. Not only was I  increasingly unable to work, I was no longer able to do so many of the things that I loved. On the rare days that I wasn’t dealing with extreme abdominal pain or a mind shattering migraine, the least bit of exertion would leave me completely drained.   I couldn’t attend evening events because I was so exhausted I could rarely stay up past 9pm. In fact, I was in bed by 8pm every night. Going to restaurants became a problem because no matter what I ate, I would feel sick immediately after.  Shopping was no longer fun- it was exhausting.

My mind wanted to do so many things, but my body was not cooperating. I would accept invitations, make plans, and make airline reservations…only to end up having to cancel them because I was too sick to go…

I started to get the feeling that people were getting annoyed with me and my cancellations. I felt that no one understood what I was going through…or maybe didn’t even believe me anymore.  Weeks turned into months as I searched for an answer.I tried different diets and supplements.  Doctors told me that some people take a year of more to recover from this type of surgery, but that didn’t explain all the other symptoms.

I researched my symptoms. I read medical papers and studies. I read medical books. I visited websites meant for medical professionals and had to look up every other word to understand the medical terminology. It was like working on a huge foreign puzzle. It was a slow, tedious process, but I finally started to find a common thread. Autoimmune disease kept coming up. 

An autoimmune disorder occurs when the body’s immune system attacks and destroys healthy body tissue by mistake. There are more than 80 types of autoimmune disorders. These are diseases that include Diabetes Type 1,  Lupus, Parkinson’s, Rheumatoid Arthritis, Scleroderma, Sjoegren’s and MS, to name a few.

Here’s the scary part- when it comes right down to it, the experts don’t know all that much about autoimmune disease. No cure. The medicines used to treat these diseases cause side effects so horrific it's questionable as to which is worse- the symptoms of the disease or the side effects of the medicine!

Through my extensive research, which included support groups and talk threads, I found there are countless numbers of people suffering in situations similar to mine. That is why I decided to share my experience and hopefully it will help others. I hope you will join me in my quest to take back my health.

See you soon with new updates!