Thursday, February 27, 2014
Journey along AS is a pain in the...well you know Ankloysing Spondylitis
Ankylosing spondylitis is a long-term type of arthritis. It affects the bones and joints at the base of the spine where it connects with the pelvis. These joints become swollen and inflamed. Over time, the affected spinal bones join together.
As the pain that has fancied itself a real hang in there trooper, it is sure true to itself, hanging on daily, reminding you , "I'm here!". This ankloysing spondylitis is a real changer in life, activities, attitude adjustment I must say. It will limit you, push you, taunt you ( no pain in that joint today and the next-hello!)...as with any disease , you will re-evaluate life, you might whine, growl, moan, but then pick yourself up and say "I'm going to keep going and you are not beating me!"
A lot of pep talks to get through the mindless chores of the days, praying unceasingly. I finally told friends about this 'caring' disease and the support of great people is overwhelming . Care, love and understanding, so simple, yet so important. The others may not understand and say "but you don't look sick" in mindless little words of which I agree and say you can't see my insides.
So on this journey of #3 in autoimmune disease, I will journal on what is working for me naturally, as prayerfully I consider each step and maybe in hopes to give a light to others.
I will say I have not been officially diagnosed, this is suspicious and sure to me, I have kyphosis, bone spurs, scoliosis, have had pain since younger child years (growing pains), mid back pain for many years, have wry neck since birth. 2012 or little before , pain started in tailbone and no injury, couldn't sit in most chairs or a couch. That had moved to a hip, went away, had shin pain along with pain in chest that I thought was heart issues as I was taking yaz for years or perhaps a blood clot, but checked all clear. Those pains are common (rib pain) as those went away for months then snuck back in. Since then , the sacrum area , not lower back has been pain daily, laying certain positions or hard time walking when it's really in a flare. I was going 3 days of a flare or worse pain, then away, then later, now it's just hung daily. Shoulder pain in joint comes and goes as well as one ankle joint. Oh yes, gastrointestional problems come and go, good stuff!
So X-rays, yet 2 different opinions on what was seen, they don't always show bone damage until later, I had a negative HLA test and again there are 10% or so that have AS being negative. So again go with your gut, stick to your guns! I have not gotten a MRI as that can show tendon, etc inflammation as they are expensive . I infrequently take Advil (3) and that does help, but I can't feed myself that all the time, so only when necessary when I have important out if the house things to do. Tumeric powder in a daily smoothie with coconut oil (I hate cooking with it), yogurt, peanut butter, milk, oatmeal, banana. My liver enzymes are some off and that can be normal in AS also I've read, so I take milk thistle for such. High cholesterol that I take red yeast rice and coq10 as that is a must together for enzymes that can get off in the body.
As with any chronic disease, pace yourself, you only start with so many spoons for the day as lupus sufferers say, God took activities away (and STRESS) with is a BAD thing) so I could focus on an awesome Women's Bible Group we are starting March 6. HE knew I couldn't handle all of the things going on, so indeed HE took care of it. Whether it is chores and normal everyday things that are so difficult to get through, PACE, and relax with that coffee, tea, bath....it's OK to NOT get everything done, take care of yourself and you and those around you are better off! Give GOD the Glory! Stay blessed friends!