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

  Today I received a call from my son's school nurse. My son wasn't running a temperature, but he felt dizzy, light headed, and nauseous. My oldest son went to the school and brought his brother home. As soon as he came in the door, I sent him to his bed. I tucked him in the bed and asked if he needed anything. He went to sleep quickly. I checked on him a few times. He looked so peaceful sleeping.   This incident made me think about all of my children's futures. I pray they never have to face Ankylosing Spondylitis or any of the other illnesses that affect me daily. If you are a mother, you know how I feel. I would suffer any disease if it meant my children didn't have to experience it.   My daughter has already been diagnosed with Raynaud's Syndrome. I don't think she takes the disease very seriously. I constantly remind her to wear socks or appropriate shoes to protect her toes. She does take better care of her hands thankfully. She wears gloves when it...

  I wrote, not too long ago, about I need to lose weight. As many of you know that is easier said than done. At my last rheumatologist appointment I was dreading stepping on the scales. This dread was compounded by my mom standing close enough to read the scale. My mother has not been kind about the fact that I weigh too much. In fact, she has had both my sister and I in tears many times.   I hold my breath as I step on the scale, as if that will help me weigh less. The digital readout flips between a couple numbers and finally stops at my weight. I currently weigh more than I ever have in my life. Even more than during my pregnancies!    I wish I could blame it on medication side effects, but that would only be one component. Last year, I was changed from Humira to Enbrel and then from Enbrel to Cosentyx. I also had flares last year that were treated with steroids.    I know a lot of my habits were the culprit. I have never been a healthy eater. From...

 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 Much of the information  I found was either outdated or for medical professionals.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...

  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...

  This morning was one of those mornings, the kind where you would like to stay in bed all day, but can't.   Normally, I try to not commit to too many engagements on the same weekend, let alone the same day. Ankylosing Spondylitis has taught me very quickly who controls my social agenda. As many of you with autoimmune diseases wholeheartedly know, our minds and hearts may be set on doing something but our bodies may say, "no way, not today".   I had confirmed months ago, I would attend my cousin's wedding at 4 p.m. today. I was expecting I would have all day to get this ole body moving and ready to attend. Of course, it doesn't always go as planned.   For several years, I have attended an annual Women's Conference in the fall. I enjoy these conferences very much and value the time with my friends and community. I found out a few weeks ago that the conference was today from 9 a.m. until 2 p.m. That's how you end up filling too many activities into one...

  Last night as I lay in bed trying to get to sleep, my feet were burning and my ankles ached. I have Peripheral Neuropathy. My neurologist prescribed Gabapentin about 3 years ago and has increased my dosage as needed.    I had an appointment with my neurologist last month. I told her my neuropathy symptoms are worsening, keeping me awake at night and causing me to fall more frequently. The doctor explained she could increase my Gabapentin, but the side effects would also increase. My main side effect being sleepiness during the daytime. If that side effect would hit me at nighttime it would be the perfect solution to my problems. Alas, no luck there. After telling her I certainly didn't need more daytime sleepiness, she said Lyrica might be an option. Of course, I have saw the advertisements on television for Lyrica. My doctor told me I would need to discontinue the Gabapentin before beginning Lyrica. Therein lies the problem, my Gabapentin also helps control...

 I have been dedicating my blog to ankylosing spondylitis awareness, but I have several other diagnoses as well. I believe while AS is my main fight, these other diseases aren't making it easy for me to keep fighting. Today I want to share one of the other enemies of my body.   It all began in my childhood. I can remember as an 8 year old crying with back pain. My aunt babysat me daily while my parents worked. She was an older lady, the kind who tells all those intriguing tales of the good ole days. My aunt was born in 1918, she was in her 60s when I was a child. I guess I equated her to a grandmother, since a majority of my grandparents passed away before I was born.  My aunt told my parents I needed to see a doctor about my severe back pain. Mom and dad were tobacco farmers, with a few cattle, plus they worked on a job 40 hours a week. They stayed so busy they really didn't see me very much. I mean I slept in their home, but I was dropped at my aunt's house when I wa...

  I am really not looking forward to today.....   Anyone suffering from AS knows when we overdo ourselves, we end up hurting more and dealing with extreme fatigue. I have a feeling it's going to be one of those days.   My husband and I are leaving in the morning for a much needed vacation. Today I have to pack, shop for groceries for my sons, clean the house, and take my mom to urgent care for a possible UTI. After all these years you would think I would know better than to procrastinate until the last day. Oh well, I'll tackle one thing at a time.   If I don't make it to the grocery store it'll be okay, the boys will survive. My oldest son already suggested I could leave money and they'd eat out each night! I don't see that happening haha.   It is so nice that our kids are old enough to take care of themselves, the house, and the dog. Plus they will keep an eye on my mom also. I absolutely loved having little kids, one of my greatest joys, but having th...

  Yesterday my mom called to chat. She had been to visit my sister. Mom mentioned my sister was cleaning her bathroom walls. Which got me to thinking, I haven't washed my bathroom walls in such a long time I don't even remember it.   My clean freak of a mom would croak if she knew that. However, when I was employed I just didn't have the energy to do much housework. Basically I came home, fixed my kids a quick bite to eat, took a shower, and went straight to bed. I typically was in bed by 8 pm. I know that is crazy early but I had to be up every morning at 4:55 a.m. for work. Plus as most of you with anklosing spondylitis can relate, I had some nights of rolling and turning. Hip pain, rib pain, neck pain, and burning feet are my worst nighttime AS visitors. I wish I could be one of you super woman who work a job, have a spotless house, and are moms. I applaud each of you. I have many times felt such disappointment in myself because I can't keep it all up. My family de...

   I'm sure a lot of you will relate in trying to save your family money at the grocery store.    Due to the progression of my ankylosing spondylitis I had to give my job up in December 2016. That was a very emotional decision for me. I may write about it at a later date. This post is about couponing since we are a one income family at this point.    I tried subscribing to our local newspaper in order to clip Sunday coupons. I found this to not be cost effective. Some weeks I only used a couple of the coupons, paying $2 per paper was a losing proposition. I canceled my subscription after 2 months. Of course that was not as easy as it sounds, the newspaper office called constantly offering me better rates. At one point I might have restarted my subscription but after being called 4-5 times a day, I said forget it. Why doesn't telemarketers report the consumer said "no" and stop calling?   Back to my subject!  ;)   I found a wonderful s...

    Finally after years of joint aches, inflammation, fatigue, and chronic pain I had an answer. But what the heck did they say I have? I sit silently taking it all in, trying to focus on what I'm being told. To be honest, I don't think I heard a fourth of what the NP told me after that strange sounding name of the disease. Here I am with an answer, THE answer. Is it wrong to feel relief? Happiness? How can I be happy, I just learned I have some weird sounding disease. Yet the flood of relief is overwhelming.      I think I may be taking this news oddly compared to other sufferers. Sitting in that little exam room all by myself, I have learned the pain is legitimate. I have suffered this so long without answers at some point I began to wonder is it all in my head. Is what I'm feeling real? I certainly know I hurt but could my mind be controlling all of this pain. I have told the long list of doctors what I experience. Some of them seem to listen and have a ge...