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

    How does a mother face the fact that she has unknowingly passed a chronic condition on to her child? I've been asking myself that for some time now. I have guilt because my children are my heart. I would do anything to protect my children. Yet I have no doubt that at least two of my children have spine problems just like me. It weighs on me daily. Let me share a bit about my sons.    My oldest son is 26 years old. He started complaining of back pain at a young age, approximately 7 or 8 years old. I wasn't diagnosed with Ankylosing Spondylitis at that time. I believed my spine issues were all scoliosis related. We went through years of taking him from one specialist to another. He would cry from the back pain. I remembered when I was young crying with my back pain also. It was heartbreaking. I feared he would need a back brace like I wore through my teenage years for scoliosis. However, he only had a slight curvature in his spine, not enough to need bracing. I did...

   I've been neglecting to update everyone on my eBay journey. It has become one of the greatest joys of my life. That probably sounds crazy, but I receive so much pleasure running my own store.    If you've followed my blog you know I had to leave my prior job due to my Ankylosing Spondylitis. I was unable to work on a set schedule. With AS you can't make solid plans because some days you are in pain, experience overwhelming fatigue, or have unrelenting stiffness. Unfortunately, I didn't have enough work credits to qualify for Social Security Disability.     I decided to try opening an eBay store in early 2019. This seemed like the perfect job for me, I can work when I'm feeling well enough. I'm thrilled to say it's been over a year since my store, Bamboo Spine Gal, opened and it is going great. I love providing quality new & pre-owned items to consumers. I've had such great interactions with my customers. I'm very proud to say I've earned t...

  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...

Today has been a disappointing day. I had an appointment with an oral surgeon this morning. It didn't go as expected. I guess I should start at the beginning. Several years ago, the roof of my mouth would wake me up itching. I know that sounds weird, but what about our bodies isn't weird? Anyway, I would have to rub the roof of my mouth with my tongue to relieve the itching. I assumed it was an allergy issue. I tried monitoring what I ate to see if there was a correlation, but it had no rhyme or reason. This intense itching in the roof of my mouth continued off and on for a year or two.  One day, while my family doctor was checking my tonsils because of a sore throat, he discovered a bony growth. My physician said he had seen these bony growths before, but he couldn't recall what they were called. Of course, I was curious as to what was growing in the roof of my mouth. Finally, thanks to Google, I discovered it's called torus  palatinus. Apparently, it is a benign g...

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 ...

     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...

   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...