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

  As I sit here at 4:35 a.m., I'm thinking of what my future will look like.   My back was hurting so much I couldn't stay in the bed any longer. Sometimes it feels like my spine is about to burst. I don't know if other Ankylosing Spondylitis warriors feel this same sensation. As sleepy as I was, I had to get up and move.    I have noticed my symptoms have been steadily increasing. I attribute some of this to the lack of my biologic medication. My insurance company denied the prior authorization of my injections; until my rheumatologist submits lab work showing proof that the medication is helping. Although I know the medicine was helping to a degree, the lab work shows high inflammatory markers. My last sedimentation rate was in the 70s and my CRP was also elevated.    What do I do now? It's unclear at this point. I've tried and failed on other medications. Is this how the rest of my life will be? Trying medicine after medicine with only slight impro...

  Here we are halfway through February already. As I get older it seems the years pass quicker.   Unfortunately, this new year has not began well. I experienced a change in my health insurance January 1, 2019. This normally might not be problematic, but if you are on biologic medications it can be a nightmare. With my prior insurance company, I was only allowed to receive 1 prefilled Cosentyx per month. Therefore, when the new year with the new insurance began I had no Cosentyx.   First thing I did was try calling my new insurance company, epic fail. I was on hold for 48 minutes waiting for my call to be answered. When a customer representative finally answered, she was clueless. I asked her who they used to fill specialty medications for their members. She had never even heard of a "specialty" medication. I explained it was a medication that has to be shipped to me because regular pharmacies do not carry it. She seemed perplexed. Finally after several minutes, she to...

     I am looking into other options to help my family's financial situation. I know with my ankylosing spondylitis I am at a disadvantage. I am unable to perform the types of jobs I have held in the past. I currently have a part time job, which allows me to pick my own hours and days. It is perfect because if I am experiencing too much pain on one day, I can simply work another day. However, this job may be coming to an end soon. I hope things work out and I can continue with my current position, but I do not want to wait and be left with no income. Hence, I have been scouring the web and asking opinions from friends about jobs they think I might be able to handle with my health issues. It hasn't been an easy task.     Where can someone with ankylosing spondylitis, scoliosis, osteoarthritis, peripheral neuropathy, and fibromyalgia get hired? Good question, huh? Yes, I know some people don't disclose their health issues to employers, but how can I not since the...

  Fall is here finally! It seems like it's been so hot for so long, I couldn't handle being outside for very long. These cooler days are definitely a welcomed relief from the heat. So why does my pain levels have to increase every fall? I began to notice this trend a few years ago. It is disheartening because fall and spring has always been my favorite times of the year. Those two seasons are when the temperatures are just right for me to enjoy the outdoors.  I used to love traveling through the mountains to look at the beautifully colored leaves. I'd have my husband and kids get out of the vehicle with me at every scenic overlook on the Blue Ridge Parkway. I miss those days. As my Ankylosing Spondylitis has worsened I haven't been able to travel as much or as far as I once did. Sitting for extended periods in a vehicle makes it almost impossible for me to move. It's as if my body seizes up if I don't keep it in motion.   I was talking to some friends the ot...

  Yesterday I received an arthritis magazine I subscribe to in the mail. I began my subscription years ago, when I was first diagnosed. Back then I looked anywhere I could to get more information on ankylosing spondylitis. I found limited amounts even on the web.      Eventually, I discontinued my magazine subscription for a period of time. This was mainly due to the magazine not having much information pertinent to my disease. At that time, it's articles were more focused on rheumatoid arthritis and psoriatic arthritis. However, my rheumatologist office usually has waiting room copies of this particular magazine. I would peruse it while waiting, I began to see more articles including AS. So I made the decision to resubscribe. It has some very informative articles that include ankylosing spondylitis. I am so pleased that newly diagnosed AS patients will have options for information that those of us diagnosed several years ago did not have.   The article I w...

  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...

  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...

  Have you ever found out something about someone close to you that shook you to your core? Something that blindsided you? Something that the hurt is so severe you will feel it for the rest of your life? Something that feels like a knife going through your heart?   If your answer to the above questions is "no", I hope you never experience that kind of pain. However, I dare say there are more who have been there than not. If you have love, friendship, or really any kind of relationship you probably have experienced at least some degree of this hurt.   Why do I bring this subject up you ask; the hurt I described above can be devastating to us with autoimmune diseases. The deep hurt suffered in our emotional health spurs our disease to kick into high gear. Ankylosing Spondylitis looks for opportunities to strengthen it's hold on our bodies.    Some may say, I am fortunate because I can count the number of times I've had this deep hurt on one hand. One of my ...

Yesterday was my yearly checkup. I always dread going for it but I love my doctor. She helped me through some of the lowest times in my life. She delivered all three of my children. After my third child, I slipped into a deep, dark, postpartum depression. My doctor isn’t like typical doctors, who never share their vulnerabilities. In her past she has had two nervous breakdowns. Some people in my community, ask how can you trust a doctor who has such a history? Thankfully, there is a lot of people in our community who views her breakdowns as I do. It’s a strength in my opinion, my dr doesn’t try to hide her struggles. She is not a robot. Life and issues affect her just as it does her patients. She has no problem sitting and really talking to her patients. She doesn’t only read her patients medical charts, she knows their families and cares. When I experienced my postpartum depression, she sat and listened to all my worries and fears. She wasn’t like my family members who said, “S...

  I'm looking forward to today. That's a huge thing for anyone with an autoimmune, degenerative disease to say. Most mornings my attitude is more guarded, since it's a toss whether it'll be a good or bad day. However, based on my day yesterday, I have hope. Hope....is amazing!   Day before yesterday, I received confirmation that my quantiferon TB test was negative. If you've read my blog for a while you know I had received an inclusive result on my TB test. I researched what an inclusive result means and basically it could be due to tech error or due to a person being immunosuppressed. Both of which sounds reasonable in my situation.   My doctor didn't want me to begin my new medication, Cosentyx, until I received those negative results. So finally I had the all clear to begin my Cosentyx. I injected around 5:00p.m. Monday afternoon. I really like the "sensoready" pen. When I was on Enbrel there were times I had trouble getting the top button to ac...

  As I have mentioned, I had to give up my employment last December. I try to find projects to occupy my mind when I feel well enough to produce something. Sometimes it may take me many days to finish the project, due to the fatigue or pain Ankylosing Spondylitis bestows upon me. My husband would say some projects have taken years and are still incomplete. Specifically, a train cross stitch I began for my son's 5th birthday, my son is now almost 22 years old and it's not completed yet. I'm not sure why I can't seem to finish it. It has become a inside family joke. There isn't a lot left to do on it, maybe this will be a Christmas present this year.   I decided since we are now a one income family, I need to "make" as many Christmas presents as possible. I am self conscious about sharing my crafts with family and friends. I always fear it's not good enough or not perfect.   That fear has been the story of my life. Looking back on my life, I have alw...

  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...

  Guess how I spent my day??   I crafted a horror doll. If you don't know what a horror doll is, you're not the only one. I didn't either until my husband shared a YouTube video of a lady making a horror doll. With Halloween approaching it seemed like a fun project. Plus it gave me a purpose.   Between waiting for her layers of paint to dry, an idea popped into my head. I admit I am a Pinterest junkie. On Pinterest I have saw so many cute signs made out of old wood. Since I already had paint and brushes out, I decided to make a fall sign. Luckily my husband, who is a pallet hoarder haha, had disassembled several pallets this past weekend. I scoured through his stack of pallet boards, until I found an old, weathered looking board that was split a bit on one end. I figured the split would give it character. Plus the board probably was unusable for my husband's next project.   With board in hand, I headed back inside. I considered doing a horizontal sign but in th...

  Last night was very chilly. We had to use our furnace for the first time this season. Snuggling under our covers felt so good this morning. It made getting up even more difficult than normal.   With the chill in the air and leaves starting to fall, I am reminded the holiday season is just around the corner. Which means it is time for me to start thinking about birthday and Christmas gifts.    I have 3 children, two are adults. (Although, I still think of them as kids.) Also, I was blessed to welcome a wonderful son-in-law into our family this past July.   My husband and I try to make our children's birthdays as special as possible. With two having birthdays right after Thanksgiving, it can be overshadowed by holiday events. As a mother with an autoimmune disease it can be a stressful few weeks. Each year I want my sons to know how special they are to me. I want to celebrate the blessing I was given when each were born.    My mind wanders back...