Welcome To My New Life Fighting A Disease I've Never Heard Of Before....... Ankylosing Spondylitis

  Before I was diagnosed with Ankylosing Spondylitis, I had never heard of it. I knew something terrible was going on with my body, but I assumed it was Rheumatoid Arthritis. When I was a small child, my maternal grandmother was diagnosed with RA. We visited her every Sunday. I remember her crying in pain during some of those weekly visits. I also remember her recounting her weekly struggles and doctor appointments. As a child hearing these tales of pain in her shoulders or hands, I could not begin to imagine how your body could hurt so severely. My grandmother was fortunate in the fact that she was able to be active right up until her passing at age 84 years. I believe her body and pain would have been immensely worse if she had not been able to stay active.   Following in my grandmother’s footsteps is my mother. Mom had episodes of significant pain during her 40s, 50s, and 60s. However, my mom is one of those people who is never still. She is constantly doing something. S...

Today I thought I'd share our videos about remodeling our son's bedroom. I posted earlier about trying to help my husband with this project. It was a slow process. Ankylosing Spondylitis is so unpredictable, one day I may feel like I can conquer the world but be bed ridden the next day. It has taught me to make flexible plans and just go with the flow. (Pardon the horrible mess!) The video below is an after remodel look. (We still had a few things left to do when I filmed it. I hope to do another video later to show the crown moulding, closet completed, and the awesome gaming cabinet my husband made for our son.) To follow our journey remodeling our mobile home, as well as restoring our vintage travel trailers, subscribe to our YouTube Channel.   Mobile Home & Vintage Camper Mom I'm hoping to learn how to edit my videos, I was happy I got my video uploaded lol. I'm so far behind on technology, it's a wonder I can turn a computer on! I have to ask my...

  Frustration.... such a little word but it carries so much meaning. Frustration, it is what I've felt for the past week, dealing with medical insurance renewal. Yes, it's that time of year again, choose a plan. If only it was that simple.    Having a rheumatic autoimmune disease, Ankylosing Spondylitis, entails many doctors and many medicines. Therefore, I need an insurance plan that covers a majority of what or whom I need to fight this disease. It is no easy feat to find the "perfect" plan. There actually are no perfect plans available to me.   I resort to finding the insurance plan that covers the specialty drugs I need. Luckily, that plan also has my primary general physician, my neurologist, and my opthamologist included as in-network doctors. The only doctor it lacks is my rheumatologist. Oh, and it also lacks coverage for the folic acid I need to take daily to combat the side effects of the chemotherapy drug. The chemo drug makes my hair fall out, unless ...

My husband needs a new, actually a gently used, work vehicle. Why, oh why, do I not have patience to deal with used car salesmen? Is it because I am already in pain when we arrive at a car lot. Add walking around the lot looking at different vehicles, to an already wore out spine, feet, and hips and you get me at my worst. I realize it’s not really the salesman’s fault. I understand he is trying to sale a vehicle to earn a living. He may have a family at home that depends on him. I know he has no idea what I am experiencing. That is one of the biggest issues with an invisible disability. People can not see all the degeneration going on in your spine and hips. They only see your outward appearance. I’m sure my face reflects my pain but unless you know me, you may mistakenly see my facial expression as grouchiness. I know many of us Ankylosing Spondylitis sufferers have disabled parking placards. In my support group, many of the younger members have had people comment on their use ...