Sjogren's Syndrome

I want to talk about this Sjogren's Syndrome I was diagnosed with last year. It came about a month after the Arachnoiditis diagnosis and sometimes I wonder if it didn't bring it out. Sometimes you can have an autoimmune disease stay dormant in your body for years, stress and other factors can bring it out. ( My therapist told me that when I told her my thought on it.)  Since Arachnoiditis is the trauma to the spinal cord nerves and can cause so many different things to go wrong in your body, seems to me it could be what caused this to come breaking out! I won't get into all the medical mumble jumble of Sjogren's because to tell you the truth, it's all about antibodies and positive blood tests and lip biopsies and so on. What I can tell you  is this, it causes dry mouth, dry eyes and other dry places and it causes some more extreme joint pain, fatigue and other weird stuff. I am 44 X more likely to get lymphoma. Will I get it? I don't know, but it's scary all the same. I do not dwell on it but the first time my glands swelled up in my neck and my ears and throat were sore, it's the first thing I thought of, I had never had it happen before. It is strange how all this new stuff just starts coming up out of the blue. The rashes too, they are what helped get me diagnosed, but they are strange because they do not hurt or itch. The only one that did itch was on my shins and it drove me crazy but we finally got it under control. The sun which I love is probably the culprit. Retire at the beach and now I am supposed to stay out of the sun, ironic isn't it?  Sjogren's is considered a Connective Tissue Disease so that is why I believe I have all the ITIS brothers living in my body. If it's a muscle, tendon, ligament or cartilage then this disease will cause a problem with them. I have a problem in every joint in my body and the little problems I had have now all of a sudden gotten worse. The inflammation in my body is worse. It really sucks to go to the Dr. when your foot hurts and be told you have Plantar Fasciitis, then the next time you go it's because you have tennis elbow, arthritic knee, bursitis in hips and legs, tendinitis in your ankles and the list goes on and on.....when does it stop!?  Now all of this stuff you can get under control most of the time. I did a LOT of physical therapy to get that Plantar's under control . I did a lot to get my knee working again so I could put down the cane but it never got better until I got an injection of Synvisc and the next step is having it cleaned out. I am putting that off until I just can't help it anymore. I am tired of being cut on. Through the years I have had so many back surgeries, gall bladder, bursa removal in my foot, screw put between my toes to keep them from growing crooked, hysterectomy because scar tissue was growing on my uterus from back surgeries and the spinal cord implant. All of the stuff that I have been through, some people have called me a hypochondriac, well I have news for them, I am not one and I never have been and it really ticks me off when people say that. You're just too young for all of that. Well yeah I was and am, but it's my life and I have never went to the Dr. where there wasn't a real diagnosis for what I was going through. I at least now know why I have had so many joint, and other tissue problems like tendinitis and burstis so long. Do I sometimes make a drama out of how I feel? Probably, I mean let's face it, I get tired of hurting somewhere. I do however relish the days where it's minimal and make the most of them. I am probably more grateful for a beautiful, pain free day than most people who don't have pain are, ever! With this Sjogren's, I have a little of the dry mouth, my eyes are dry sometimes but not really bad. My battle with this is the joint pain and all the itis brothers and fatigue. I keep a bottle of spray for my mouth by the bed because nighttime brings me the worst dry mouth. I keep my eye drops in my purse, beside my bed. I have my lozenges for dry mouth in my purse. I have to use a special toothpaste at night with A LOT of fluoride to help keep my teeth from decaying due to dry mouth. I don't want to lose my teeth, that scares me too! I have to take a medication called Plaquenil for the Sjogren's. It helps slow down the rashes and keeps the joint pain minimal. I think it's supposed to slow the progression. It is a drug made for malaria, how it came to be used in Sjogren's care, I don't know. The worst side effect is it can cause you to lose your sight. It's rare, but it can and you have to have eye exams by an Ophthalmologist every 6 months. I have come to terms with all of this. I do have moments of weakness and dwell on them when I am feeling bad, I do not however dwell on them day to day! I would be so depressed and probably never get out of bed. So I think I have pretty much explained why you might hear me whine some days and or cry. Let me tell you, don't ever think for one minute, any of you reading this who have the same thing, that crying is weak, or giving up. Sometimes, we have to let it out! This is why I started this blog. It is for my therapy but it's also for all of you Sjoggie's out there and any of you with arachnoiditis or other pain related illness. Don't give up, know there are so many like you and who understand you out there! I am only one!
I want to say that I do want a dialogue with you here. If you care to have one. Please, leave a comment below! If you don't have a google account, leave one anonymously or give your name in your comment then post anonymous if you want me to know who you are! Thanks for reading and I want to end this by saying that I give all the glory to God for allowing me to be able to share my thoughts, to be able to get out of bed today and walk, and clean, and do normal things! I can do all things through Christ who strengthens me! Philippians 4:13.
Love to you all,
Cindy