My name is Irish and I am back for the second time as a moderator.
I can't remember not feeling generally lousy. I remember starting to perspire a lot when I was a senior in high school. I had lots of aches and pains, fatigue, anxiety, for many years. The third pregnancy was full of Sjogrens health issues and I was ill the whole time.
I went to the doctor when I was fed up with feeling lousy, but mostly I just dealt with it the best I could and planned my life around it.
I got worse as I got older and some of this is the body's inability to pop back from the bad days or weeks. I missed months of work at times and had to quit a few jobs because I was weak and ill. I always felt like such a failure but at the same time was so glad to be home so I could rest. Many times I suspected autoimmune but doctors didn't much listen or really care. All in your head, you know!!!
I spent years, many miles and a lot of money trying to get help. All this time my teeth were deteriorating. I had such bad infections and so many teeth pulled - root canals and caps. Finally after much discussion with a new dentist I was able ego get my teeth pulled - the best thing I ever did. In 2002 I had another one of my horrible painful rashes on my upper arms. Finally got diagnosed with Bullous pemphigoid which is a skin autoimmune disease.
In June of 2003 I told my hubby that I could not work anymore - had no push left. I was sleeping only 2-4 hours a night and waking up nauseated every morning around 4 AM for many years. It took me around 3-5 hours to get ready for work as I had to rest so often. I thought I was just tired and needed time off. I had so much thick mucus that it was ruining my life. I bought 10 boxes of Kleenex a week. Three weeks after I quit I was in my recliner from weakness and pain.
Saw new rheumy and she ordered a lip biopsy and it came out positive - surprised the heck out of a bunch of my doctors. Finally, I thought I would get better. Didn't happen. I went back to that doc every so often and had so many complaints. She finally told me that I was taking up too much of her time. I fired her!!!! I then got ill with my Mycobacterium kansasii infection along with MRSA. The first infection is a non contagious form of TB that was found on cat scan to be in my lungs, liver and spleen. I was on 3 different antibiotics (8 pills a day) for one year for that infection.
Shortly after that I was sent to my immunologist who diagnosed me with Myasthenia gravis, Hashimotos and severely low t-cells. My t-cells were so low that doc was always watching me for the type of pneumonia that the HIV patients get. My low t-cells were from autoimmune disease though as I had other cell counts that were low. I have been on IVIG going into my 9th year plus been on prednisone for around 10 years. I have tried methotrexate which didn't go well with my low t-cells and I got sick, Imuran which made me sicker than a dog and Cellcept which caused more side effects as the dose was raised. I still might tie that a try at a lower dose in the future.
I took care of my hubby for many years and he passed away last April. He had Celiac sprue and leukocytic colitis and lived with poor health for many years. He had more diagnosis that you could shake a stick at. Our oldest son has hypothyroid and Hashimotos encephalopathy and is on Methotrexate 25 mgm a week plus s few other meds. He was one sick guy ands so thankful that he is doing better.
Middle son has hypothyroid and aches in his whole body with lots of tendonitis. He also has had severe GERD for about 10 years and is just now starting to lose his teeth. He told me the other day he thinks that he has Sjogrens. He also runs abnormal liver blood work at times.
The youngest boy has Celiac sprue and colitis and has probably also got Sjogrens as he aches all over and has dry eyes and mouth. HIs son is on gluten free diet since age 4 for celiac symptoms.
I have a tendency to be abrupt and to the point. Don't take this as rudeness or that I don't care. I just get tired and have to get done fast. I am like this when I cook and throw stuff all over the kitchen and make a mess. I always told hubby it was a race to see whether I could get a cake made before I had to sit down and rest. I am sloppy in my old age.
Spring and Care started this site many years ago and have provided one of the few high caliber online sites on Sjogrens with information and friendship. For this I will ever be grateful. I am honored to be back again. Thanks. Irish