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

  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...

  Thanksgiving is a wonderful time to reflect on our many blessings. It is also a time to cherish family gatherings. We celebrated Thanksgiving at our home on Friday. Thursday was not an option due to my oldest son's work schedule. On Saturday we were invited to the home of my daughter's in-laws to eat Thanksgiving dinner with them. We truly enjoyed both days. Each was filled with much laughter and more food than we could possibly eat.   I was thinking back to my childhood Thanksgivings. My mother cooked on a wood cookstove during my early childhood years. I can not imagine cooking a turkey that way. I remember mom would have to keep an eye on the wood, not putting in too much, but enough to keep the oven temperature stable. We had running water from a well. However, we had no hot water heater, so there was always a big canner of water sitting on one end of that stovetop. Mom always knew where the stovetop was the hottest and moved her pots and pans around accordingly. At th...

  Saturday night was torturous. I rolled and turned all night. My hips and lower back were in severe pain. I think, as a friend suggested, I may have overdone myself. Also, I have been noticing my weekly Monday dose of Cosentyx has me feeling wonderful until Friday or Saturday. I assume that's why my doctor is having me do a five week loading dose. Fingers crossed when I begin my monthly injection it will be effective for the full month.    Monday morning I was psyched to get my injection. Exactly as the prior two weeks, by midday I felt so much more energetic. My husband took some vacation days from work this week. He and I have had a productive start to our week.   My youngest son will be having a birthday soon. He wants a new bedroom, since his sister got married last July we have an extra empty room. My husband and I thought a good birthday present would be to remodel the room my son wants to move into. Our money has been tight since I had to give up my job l...

  I didn't want to celebrate my upbeat energy after my first Cosentyx injection. I was fearful it might only be a placebo effect. This past Monday, I had my second Cosentyx injection. My doctor wants me to do a loading dose of one injection per week for five weeks. After the five weeks I will begin a monthly injection schedule.    I am still trying to hold back on my excitement, because I don't want to loose hope. However, I must say after this second injection, I feel so energetic and alive! I told my husband I feel more like myself every day. It is a feeling I am slowly remembering, it's so familiar. It has been a very long time since I felt like myself. It's scary that my life had been so consumed with pain and fatigue, that I had almost forgotten what it feels like to be me.   I am making progress on my housework and looking forward to the upcoming holidays. I know the previous few holidays have been exhausting. Maybe this year will be filled with happiness a...

  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...

  If you follow my blog, you've learned a few things about me.  #1... I am not a professional writer, I'm sure I make many editing mistakes. Sorry! #2... I started this blog as an outlet for my emotions, but it has grown to be an instrument to promote awareness of Ankylosing Spondylitis. #3... I have never blogged, tweeted, or had a domain name before starting this adventure. I didn't even know what a domain name was!   To expand on #3 a bit, my children laugh at my computer skills and knowledge. Until a couple months ago, I had no idea there was so many social networks online. It overwhelms me!   My teenage son helped me begin setting up my blog on Blogger one day before school. Unfortunately, his school bus arrived before we added all the gadgets on the layout. I did the best I could, adding gadgets if they sounded useful to me. You can see how lost I was without my son to educate me.   I would sit down to write a post in the mornings after my son le...

  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 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...

  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...

Enjoying the beauty all around us. Even in unexpected places.

  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...

  I keep saying I am going to focus more on my health. I have gained so much weight, I don't even recognize myself in the mirror. I am the heaviest I have ever been.   My weight issues are contributed to by a number of things. If you have a chronic illness like ankylosing spondylitis, you know what I mean when I say exercising is a pain. Some days I do not feel like dragging out of bed, let alone exercise. On the days I feel well enough to exercise I usually overdo it, trying to make up for lost time. Which ends with me spending the next couple days in severe pain.   Another contributor is my medicines. Several of my medicines have weight gain as a side effect. Just what I don't need! Why can't I have a medicine that has weight loss as a side effect?? Is there even such a medicine out there??   Also, depression helps add to my unhealthy eating. When I start feeling down and stressed, I eat mindlessly.    I was barely 100 lbs when I married my husban...

  Even as my doctor says it, I cringe....      Why do most medicines have those nasty, horrible side effects?    As my doctor explains, this new medication has been known to cause or worsen, Irritable Bowel Syndrome. I'm thinking... really, really??!! She has got to be joking. Why would anyone take a medicine that can instigate another disease.   I mean, I'm no fan of stomach cramps or diarrhea. As a matter of fact, I experience that enough without the aid of a medication side effect. There are some rather embarrassing moments, I definitely wish I could erase from my brain.   As I sit there listening to her voice I'm thinking no way, no thank you. I am NOT going to use that medicine. Nope, not this girl!    At that point my doctor checks my most recent lab work. She explains my current medication isn't helping my inflammation levels. She does a physical "feel" of the joints in my shoulder, elbows, hands, and feet. A m...

  On top of dealing with AS, Fibro, Neuropathy, Osteoarthritis, and Scoliosis, I am very stressed about money.   My family is struggling financially. In December 2016, I had to make the hard decision that it was time to give up my job. The fatigue and pain from my diseases and working was overwhelming. I would come home from work and go straight to bed. Some days, I would get up about 8pm and make myself a bowl of cereal or a sandwich. My mother lives beside me, she would cook healthy meals for my teenage son. Many days she would save me a plate, which was a blessing. Toward the fall of 2016, my mom realized how horrible my struggle had become and cooked every day for us.   My husband works second shift, 3pm - 11:30pm. By the time my husband drives home from work, it's 12:30am. Therefore, he only saw me in the morning for a half hour or so before I left for work. It was a rough schedule, not being able to see each other. We made it work for 3 years but I don't think...