My Story; The Raisin
Getting autoimmune disease has changed my life. I am finally at a point now where I can say I am happier now than I was before I was sick.
I’m Living with Sjogren’s Syndrome, Celiac Disease, and possibly Fibromyalgia.
Possibly? Fibromyalgia was the third diagnosis from my rheumatologist and she had said I “possibly” had fibromyalgia. It had come to a guessing game in figuring out why my body hurt so much and why I was so tired. I left my doctor’s office that day, knowing I wasn’t going to return and I would have to figure this autoimmune disease thing on my own.
My Story
I remember getting out of bed in the morning and feeling like my body had been hit by a Mack truck. I just knew I was hurting myself if I continue at that pace. But I had to get to work, there were too many things to do and I couldn’t possibly stop. Once I started moving I felt better and then would forget about how I felt in the morning…until the next morning.
I first went to the eye doctor’s in January, 2010. I wore contacts and my eyes became so dry and irritated, I could not wear them all day. After examining my eyes the doctor told me, dry eyes are common for a person my age. I was 52 years old. So I continued on.
In May of the same year I noticed I wasn’t really ever hungry. I would only eat because it was time to eat. So I tried an experiment. One Saturday morning I decided I would not eat until I actually felt hungry. So I skipped breakfast. I skipped lunch. I skipped dinner. I skipped Sunday morning’s breakfast. By noon time I knew something wasn’t right, I still was not hungry. So I made an appointment with my general practitioner.
In June, I explained my symptoms, including my dry eyes to my doc. He listened. He told me he thought I had 2 separate things going on. He diagnosed me on the spot with Sjogren’s Syndrome and approved me to see the opthamologist dept. so they could run tests to confirm the diagnose. My tests came back positive for Sjogrens. This is huge! On average it takes 7 years to diagnose Sjogren’s Syndrome as it is not that well known and my doctor diagnosed me in 10 minutes….how lucky am I? I’m keeping my general practitioner, he’s a genius in my book!
However, my luck did not continue with diagnosing why I had no appetite. I was sent to the Gastro Intestinal Dept. where they ran tests but everything came out normal. To add to my disappointment the GI doc put his finger in my mouth and declared it was wet and that I did not have Sjogren’s Syndrome…what an idiot! Yes, I have moisture in my body, but because my immune system is attacking my glands I do not have the appropriate amount of fluid in my eyes, mouth, vagina, etc to function properly. So I continued with my life, albeit without the contacts.
Fast forward 2 years, I found myself going to the emergency room with incredible abdominal pain. After a cat scan they concluded my intestines had stopped moving. Without movement the undigested food was creating gas and my intestines were blowing up like a balloon! They did not know why it was doing this, they said it happens from time to time, so they gave me some heavy duty pain relievers and muscle relaxers and admitted me to the hospital. Thank goodness my intestines started working again by morning. However, I knew there had to be a reason, so I started researching on the internet why this could happen…and why do I not have an appetite? It didn’t take long to figure out that I might also have celiac disease. It’s very common to have more than one autoimmune disease.
I checked my medical record and the idiot GI doc never tested me for Celiac Disease even though I had ALL the symptoms; bloating, gas, loss of appetite, etc. So I went back to my rheumatologist (refused to go back to that GI doc) and asked to be tested for Celiac Disease. Easy right? Wrong. He argued that I did not have it and I was wasting my time being tested for it. I argued with him for about 5 minutes. Then I said, just humor me, you are already doing blood work, just add this test to the list. Reluctantly he did. Well, about 2 weeks later I get this call from him, “I got the strangest results from your Celiac Test. You tested high positive for Celiac.
Voila, thus I had been diagnosed with my 2nd autoimmune disease.
It was about this time I had been at work and found I was having a hard time concentrating. I caught myself just staring at the computer screen throughout the day. I couldn’t understand what was going on as I was always a very focused person. Looking back at it, I realized now I was suffering from brain fog. I always thought that was just a humorous term people used and was surprised to find out it was a legit medical symptom. Something just clicked and I knew I couldn’t go on, I had to stop working and focus on finding a way to heal myself. I am so thankful my husband was supportive.❤️
Once I stopped working, whoa! my symptoms really became apparent. Since I no longer had to push myself to do things, I slept and slept and slept. I couldn’t get through the day without taking 2 or 3 naps a day. I always defined fatigue as being tired…oh no, there is a world of difference between being tired and being fatigued. Fatigue hurts. It is painful. My body hurt. I also suffered from Restless Leg Syndrome and TInitus.
I am writing this blog to share my experience with fellow sufferers and to let you know there is light at the end of the tunnel. It has taken years to get where I am today and I still have a ways to go. I hope you will read my posts and find some comfort as yes, there are other people who are going through the same thing. Autoimmune disease is real, this is physical not mental and the pain and fatigue you feel is real. You don’t have to wait for a diagnosis (it can take years and years for a doctor to determine which autoimmune disease you have and they can still be wrong), you can start healing your body today and you start with what you eat. 🍎🍌🥦🥑🥕🥬🥝🥗
The Raisin, Julie