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

  I slept really good last night. I haven't slept good in quite a while. I know fellow ankylosing spondylitis sufferers know exactly what I go through during the night. I've been off my biologic medicine for weeks now, the pain and stiffness increases the longer I am off of it. My hips are the current problem area. Whichever hip I am laying on wakes me with searing pain. I do what I call a roll onto my other side, but anyone seeing this process would call it anything other than a roll. I have to lift the top half of my body as high as possible then twist and slide to maneuver onto my other side. I always worry, I will wake my husband as I perform this feat of uncoordinated movement.   This morning when I woke, the very first thought I had was "no hip pain". I think after you've experienced pain for many days or weeks, you appreciate the "pain free" days hundred times more.   I am still awaiting my quantiferon TB test results so I can begin Cosentyx. ...

  I posted about my Halloween DIY crafts the other day.   As I stated in that post I had never heard of a horror doll when my husband suggested I make one. It was a fun project.  I found a cheap, $1.99 used doll at a thrift store.  I used a knife to jab out her eyes first. Next I painted all her plastic parts black (legs, arms, & head) After the black paint dried, I used a cosmetic sponge to lightly cover the black paint with dabs of white paint. I used red paint to highlight around her missing eyes, to appear they had been pulled from her eye sockets. While I had the red paint out, I painted around her mouth to appear that blood is running from her mouth. It's suppose to appear that she's just fed on a human neck. I used my cosmetic sponge to place random blood splatter on her feet, hands, and a white cloth I used to make her dress. I thought her eyes needed a little something more so I added cracked black crevices coming from her eyes. Since she i...

Christmas shopping is the last thing I want to think about on this beautiful autumn day. However, last Christmas I made a promise to myself that I would do all my shopping and wrapping early. Normally I procrastinate until Christmas Eve for last minute gifts, wrapping, and food prep. Last year taught me a great lesson on not putting off work until the last minute. It was December 24, 2016, my husband was off from work and my kids were home. I had my day all planned out. My intention was to sleep in a little later to hopefully give myself a boost to face the holiday hecticness. Of course my unwelcome enemy, Ankylosing Spondylitis, had other plans for me. I woke with my hips in such severe pain it felt like someone jabbed knifes in each hip joint. I slowly made it through my morning. The stiffness I feel in the morning lasted longer that day. I chalk that up to the stress of the holidays. One thing I have learned the hard way is stress can cause flares. Anyhow, I had put the turkey in...

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 ...

  It's important for us to have an outlet. One of my outlets is this blog and spreading AS awareness. I thought tonight I'd share another one of my enjoyments. 1966 Shasta Compact   A few years ago, my son brought home a 1965 Scotsman travel trailer. His plan was to disassemble and recycle the materials, but I feel in love with it. I convinced my son we could restore this cute little camper with it's funny front hump. Hence began a Pinterest search for restoring a vintage camper/travel trailer. The more I immersed myself in finding ideas to restore our Scotsman, the more vintage campers I saw. I was intrigued by people who "glamped" these little vintage campers. You can search "glampers" or "glamping" on Pinterest and see hundreds of the blinged out campers. We decided a more traditional route of restoration was what our little Scotsman needed. We named our Scotsman, Dexter, because apparently all little vintage campers need a name of the...

  Good news.... my insurance approved Cosentyx. That's step 1 of the process. Now to follow through with the other requirements.      Step 2- My doctor wanted me off the Enbrel at least two weeks before starting the Cosentyx. I've actually been off Enbrel three weeks. Each week that passes I hurt more. The last few days my hips have hurt terribly during the night and for about an hour upon rising. So I am excitedly, anticipating starting the new medicine. If you're a biologic medication user you know how crazy that sounds. Even with the doctor's warnings of IBS risk, cancer, infections, etc which the medicine can cause, I need something to slow the hip degeneration. When I hurt like I have the past few days I imagine this monstrous disease is progressing toward taking more away from me. Walking is a gift. I try to think how blessed I am to still be mobile. Never take anything for granted.   Step 3- Due to the medication risk factors, my doctor requires I hav...

 I want to share a book, that I found helpful when I was first diagnosed.  After being told I have Ankylosing Spondylitis, I wanted to learn everything I could about the disease. Much of the information  I found was either outdated or for medical professionals.  Luckily, I found a book on Amazon that was written by an actual Ankylosing Spondylitis fighter.  In trying to spread awareness of this nasty illness we face I have teamed up with Amazon to sponsor a giveaway. One person chosen at random by Amazon on Oct 27, 2017 will receive a copy of the first book I read about AS. I will post a link at the bottom to the giveaway. Amazon will ship directly to the winner, I will not have access to any personal info on the winner. Contest rules are listed on the Amazon page. My only regret is Amazon limits the giveaway to the US. So sorry as I have several friends overseas. Hopefully next giveaway I can find something for everyone. Gentle hugs my friends. J Holma...