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

  I don't know if other Ankylosing Spondylitis fighters experience worsening symptoms during cold weather, but I certainly do. For several weeks my left hip has been keeping awake at night. I can not lay on my left side due to the pain. Which leads me to try to sleep on my right side all night. Some nights my right hip feels like it may start hurting and I turn to my back. However if I sleep on my back very long, my lower back feels like it ceases up. Plus as an embarrassing side note, I snore horribly if I sleep on my back. At least that's what my husband tells me. Another incentive to not sleep on my back.   The other day a friend called, I told her how bad my hip was hurting. She said "oh, so you can't walk with it hurting so bad''. I told her actually I can walk, it's the only thing that helps the pain. She seemed confused. I can't explain it myself. It really doesn't make sense to me either. When the pain gets to a 9.5 on a 10 scale, I can no...

  It's official, I survived the holidays! It was a busy, crazy, go-until-you-drop December. During the month of December, I finished my loading dose of Cosentyx. Therefore I went through much of the month without an injection. I feared the change from a weekly injection to a monthly injection might spur a flare. I can't say I felt the energy I loved during my weekly injections but I did survive.   As some of you know, I went for weeks without any biologic medication waiting for insurance approval of Cosentyx. Mid-December I had an appointment with my rheumatologist. She looked back at my lab work that was performed during my "off the biologics" time frame. They use my CRP and my Sedimentation Rate to monitor my inflammation levels. They hope to keep my Sed Rate under 20, but they really prefer under 15.  It was no surprise to me, due to my pain levels during that period, my Sed Rate was 51. I have no idea the level of my rates since beginning the Cosentyx, however ...

  Last night my hip was throbbing with pain. Another hallmark pain of the Ankylosing Spondylitis disease I live with daily. I took my nighttime medications and as I lay in bed awaiting relief, I thought about contentment. What is contentment to me personally?   I thought about all the materialistic items I own. My home, car, land, and sentimental possessions all passed through my thoughts. Then I thought about my early childhood years. I remembered all those loved ones who have passed on and what an impact they made in my life. I truly have been blessed with some wonderful people through the years. That leads me to the friends and family I have today. I know if I was in need, they would drop everything and rush to my side. That is a priceless treasure. I would consider myself rich to have such people as my support system.   As I continue thinking, I hear my oldest son's laughter in the living room. He has always had an infectious laughter. I smile to myself. My childr...

  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 ...

  Yesterday I got a call no one wants to receive. I picked up my ringing phone at 2:05 pm. I heard my husband's voice on the other end of the line. He sounded a bit different. I immediately knew something was wrong. That's when I heard the terrifying words, I've been in a wreck. My stomach dropped and my heart began pounding. My first response was "are you ok?". My husband said, he thought he was okay. He said a truck reversed in the road, because apparently it missed a driveway. My husband had stopped in the road waiting for the truck to proceed. Next thing my husband knew the truck backed right into the front of our Mitsubishi Galant.    I knew my husband was okay and talking to me, waiting for the police to arrive. I should have been relieved but I began shaking severely. I sometimes experience this shakiness with no onset occurrence. I wanted to go to my husband but I could barely walk due to the shaking. I definitely didn't think I should drive. Luckily...

  I have been steadily decluttering my home. It amazes me what we have acquired during 26 years in this home. I think we become blind to items when we see them daily. I cleaned a huge contractor size trash bag of clothes and miscellaneous items out of my oldest son's bedroom and closet. My trouble is sometimes I have an emotional bond to my kids childhood items. I remember how cute they looked wearing certain clothes or how attached they were to certain toys. The funny thing is when I ask my kids if they want to keep the item, most of the time they said "no". I was shocked when they first began telling me to donate items. I finally realized I wasn't hanging onto the items for their memories, it was for my memories.    One day I watched a lady on YouTube, she was downsizing and decluttering. She recommended the book "The Magic of Tidying Up".  Some people may recognize it as the Kon Mari method. I first checked out the ebook version from my local library. I...

  I'm not sure if it's just me or if everyone experiences this, but there are days I don't want to leave the house. It can be days before a scheduled appointment or task, that I begin to dread the thought of going. There are days that I hurt and ache too much to go anywhere. Those aren't the days I'm describing. It's just a mounting sense of dread that holds me back. I can schedule something and even look forward to that event, but as the event draws closer my eagerness turns to apprehension. My mind is consumed with "should I cancel" or "maybe I can leave early". I begin to question myself as to why I even scheduled the event in the first place.    I had my annual mammogram scheduled for 2:30 yesterday. Last Friday, I began thinking maybe I should cancel. My thoughts were, I have had a mammogram every year, so I probably could put it off until next year. I mean all my prior mammograms have been clear, no lumps or cysts. Plus, my mom doesn...