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

WOW! So much has happened since I last posted. I apologize for disappearing for such a long time. Life happens and I guess we all let things fall by the wayside, but I promise to try to update more regularly. First, I want to let everyone know my most exciting news..... I talked about opening an Ebay store in some of my last posts. I'm happy to tell you I've been selling on Ebay since March 2019. I'm not at a point where I can say it's helping our finances, but that's because I've been reinvesting my earnings into the business itself. It takes a lot of time and effort, much more than I realized. However, I'm enjoying the journey. I'm constantly learning about brands and what sells best on the Ebay platform. Yes, I have made many mistakes and bought things I should've left behind. I'm still a newbie and expect it'll always be a challenge to keep up with the latest trends and sell thru rates. I'm not pushing myself to expand too ...

  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...

   Three weeks ago, I received a call from my mom telling me my sister had a small accident. Immediately my mind thought she meant a motor vehicle accident. Mom quickly explained it was actually an accident involving fire. My sister's home was on fire. Mom didn't seem too have many details. Later I learned my sister asked her daughter-in-law to call mom and not tell mom how bad things really were. Mom is 82 years old and we try to shelter her from worries, she's had enough over the years. I called my sister as soon as I hung up with mom. My sister was crying and said she couldn't talk. I asked if she was ok, with voice cracking between sobs she said "no". I told her I'd be right there. Unfortunately, we live 40 - 45 minutes away, so it's not a quick trip. My oldest son told my mom where I was going, and of course, she wanted to ride along. We headed out, not sure of what we'd find. I drove the interstate in silence, mom and I both lost in thought a...

  When will I learn not to overdo myself at work? I know I have to pace myself. The reason I am working my current job is so I can have a very flexible schedule. I have experienced the fatigue and pain from pushing my body.   I know how my body responds, so why did I push myself yesterday? I was looking forward to a 3 day weekend with my husband and kids. I worked about 30 minutes yesterday morning and was feeling very weak and tired. I tried to focus on one area at a time, hoping this would help me get through the tired, weak feeling. I sat down a few times to rest. I kept thinking I would complete one more area and then I'd return today to finish the job. However, the thought of having to leave my husband and kids a second time in our weekend, made me want to finish while I was there.   By the time I finished and returned home, I was so weak I had to sit in my car in our driveway to rest. I physically could not walk inside when I arrived at home. Also, I had sweated...

  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...

  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...

  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...

  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...

  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...

 When I am in the sun my arm gets a raised, hot to touch, red rash that burns. Does anyone experience this? Is this related to ankylosing spondylitis? Comments welcomed. Please click follow to join me.

 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...

  Click....click....click....  This is the sound that followed me while walking through the mall last Friday. At first I didn't even notice the sound. I was using my cane which I hadn't used in a couple months.   Let me back up and start from the beginning.   My husband and I took a small vacation last week. We left on our adventure on Wednesday morning. It was a 4.5 hour drive. By the time we arrived at the campground, I was completely wiped out. Of course, we had to go purchase groceries for our stay, so no rest for the weary. I tried to rush through the grocery store but being in a store you're unfamiliar with can be frustrating. Why is every WalMart laid out different? They're about as confusing to navigate through them, as it is when they change their Great Value labels right after I became accustomed to the old label.   After we finished grocery shopping and returned to our cabin, we tried relaxing. By that time I am hurting in multiple areas. B...

  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...