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

  Last Wednesday I did something I have not did in years. Two of my children and I went for a long, leisurely walk in our town. We don't live inside our town limits but we are there at least 2-3 times a week. However, on those weekly trips it's for business or grocery shopping. Those trips are focused on the task at hand. We don't take time to enjoy the beauty of our little town.   I think I am not alone in feeling life gets too busy. I know when I was working full time, all I did was get up, go to work, get off work, come home, fix supper, spend a couple hours with my family and then do it all over the next day. There were days my son would have an after school activity and that made the day even more hectic. Also with my ankylosing spondylitis there were days where I came home literally exhausted and went straight to bed. I am fortunate my mother lives beside me so on my worst days she would fix my son supper. On some of those days when I was overwhelmed with fatigue, I...

  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...

  Happy Sunday! It's a gorgeous, sunny day at my house. After weeks of snow and rain it feels so great to have sunshine pouring into our home.   My goal for today is to go for a long walk on our local walking trail. I'm writing this while waiting for my husband to get ready to go with me. The exercise will be good for both of us.   My husband had aortic valve and aortic root replacement 6 years ago. He has never returned to the same person he was before the surgery. He sleeps for hours and hours, sometimes all day. Unless I nag him, he'd spend all weekend in bed. I find myself longing for the "go-getter" he used to be. He was energetic, fun, and wanted to do things with me. He used to get me in the vehicle and we'd drive nowhere in particular. Sightseeing was our adventure. We'd camp, hike, and talk for hours. He also used to write me love letters, buy me flowers for no reason, and call me just to say "I love you". I miss those little things....

  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 ...

  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...

  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...

  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...

  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...