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

  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...

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 ...

  Here we are halfway through February already. As I get older it seems the years pass quicker.   Unfortunately, this new year has not began well. I experienced a change in my health insurance January 1, 2019. This normally might not be problematic, but if you are on biologic medications it can be a nightmare. With my prior insurance company, I was only allowed to receive 1 prefilled Cosentyx per month. Therefore, when the new year with the new insurance began I had no Cosentyx.   First thing I did was try calling my new insurance company, epic fail. I was on hold for 48 minutes waiting for my call to be answered. When a customer representative finally answered, she was clueless. I asked her who they used to fill specialty medications for their members. She had never even heard of a "specialty" medication. I explained it was a medication that has to be shipped to me because regular pharmacies do not carry it. She seemed perplexed. Finally after several minutes, she to...

     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...

Hello again! I haven't posted in a while due to several reasons. Since I am sitting here resting, I thought I would give you a quick update. Health wise: I had an upper respiratory infection in June. While the antibiotics cleared the URI up quickly, trying to get my insurance to pay the doctor has been a headache. It is in appeals right now. I may go into detail in a later post. About 3 weeks ago my left leg became very red, itchy, and burned. I have had cellulitis in the past, but this was not the same. In the end, I discovered I have folliculitis. I am currently on pill antibiotics plus an antibiotic ointment.  Since I have this infection, my doctors have advised me to postpone my Cosentyx injection until it clears. The longer I am off of it, the worse I am feeling. I've had to begin using my cane again because my back pain has been severe. Family wise: My daughter and son in law, who are both teachers, moved to new classrooms. We helped clean, paint, and decor...

  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...

  Yesterday I received an arthritis magazine I subscribe to in the mail. I began my subscription years ago, when I was first diagnosed. Back then I looked anywhere I could to get more information on ankylosing spondylitis. I found limited amounts even on the web.      Eventually, I discontinued my magazine subscription for a period of time. This was mainly due to the magazine not having much information pertinent to my disease. At that time, it's articles were more focused on rheumatoid arthritis and psoriatic arthritis. However, my rheumatologist office usually has waiting room copies of this particular magazine. I would peruse it while waiting, I began to see more articles including AS. So I made the decision to resubscribe. It has some very informative articles that include ankylosing spondylitis. I am so pleased that newly diagnosed AS patients will have options for information that those of us diagnosed several years ago did not have.   The article I w...

  Before I was diagnosed with Ankylosing Spondylitis, I had never heard of it. I knew something terrible was going on with my body, but I assumed it was Rheumatoid Arthritis. When I was a small child, my maternal grandmother was diagnosed with RA. We visited her every Sunday. I remember her crying in pain during some of those weekly visits. I also remember her recounting her weekly struggles and doctor appointments. As a child hearing these tales of pain in her shoulders or hands, I could not begin to imagine how your body could hurt so severely. My grandmother was fortunate in the fact that she was able to be active right up until her passing at age 84 years. I believe her body and pain would have been immensely worse if she had not been able to stay active.   Following in my grandmother’s footsteps is my mother. Mom had episodes of significant pain during her 40s, 50s, and 60s. However, my mom is one of those people who is never still. She is constantly doing something. S...

This week's weight loss is a disappointment. I don't want to make up excuses for my failure. I prefer to reflect and determine the steps I need to change.   Where I went wrong..... I did not drink much water at all this past week. That truly was my greatest downfall. I gave into my cravings. Some days they seem overwhelming. I did not follow through with my plan to exercise more. I was more depressed during the past week.   I could easily beat myself up for this failure. I don't think that would benefit me, in either weight loss nor my depression. I choose to move forward this week and just keep trying my best. I assume others have faced these types of set backs, if you have any tips, please share in the comments.  This upcoming week I plan to...... Drink more water! Exercise more! Increase protein! Snack on healthy foods!   Ok, here's my shame..... Last week's weight: 220 lbs Current weight:       222 lbs Hoping you each ...

  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....

Today I thought I'd share our videos about remodeling our son's bedroom. I posted earlier about trying to help my husband with this project. It was a slow process. Ankylosing Spondylitis is so unpredictable, one day I may feel like I can conquer the world but be bed ridden the next day. It has taught me to make flexible plans and just go with the flow. (Pardon the horrible mess!) The video below is an after remodel look. (We still had a few things left to do when I filmed it. I hope to do another video later to show the crown moulding, closet completed, and the awesome gaming cabinet my husband made for our son.) To follow our journey remodeling our mobile home, as well as restoring our vintage travel trailers, subscribe to our YouTube Channel.   Mobile Home & Vintage Camper Mom I'm hoping to learn how to edit my videos, I was happy I got my video uploaded lol. I'm so far behind on technology, it's a wonder I can turn a computer on! I have to ask my...

  I wanted to update you on my progress with my weight loss. I hope to post a weekly update. I think it will help keep me motivated. I'd love to hear ways you stay motivated.                                                                                                                               EXERCISE:   This past week the weather has been horrible so I didn't walk much. As anyone with ankylosing spondylitis knows there is a limitation on types of exercises we can do. I have tried more stretching this past week. I think when I can get outside and walk I will see more progress.                    ...

  I'm wondering if you've ever felt the kind of pain that cuts you to your core. I'm not talking about Ankylosing Spondylitis pain. We deal with it in one form or another daily. I'm speaking of emotional pain. The hurtful pain that makes your heart ache. I've experienced some painful emotions in my 46 years but there are a few that stands out as the worst.   Sometimes I wonder do the people who inflected those wounds know how deeply they hurt me. I think some probably realize, but then there are others who may be oblivious. How can someone hurt you deeply and not realize? I think they must be very self absorbed individuals. I try to always be respectful of other's feelings. However, being human means sometimes we all make mistakes. Sometimes you might say something that was meant one way but taken a complete different way. I have worried when I think I might have offended someone. Literally, I can't sleep from worrying about it. My grandfather passed away ...

  Now that I have been taking Cosentyx syringe injections for a few months, I thought I'd share my experience.   I began with a loading dose of one injection weekly for five weeks. My rheumatologist supplied me with five Cosentyx auto-inject pens. I've blogged about my euphoria feelings during my loading doses. I had energy like I hadn't experienced in years. I felt like the old me, the one who could function without pain. I won't go into all of that since you can read it in my earlier posts. I will say my experience with the auto-inject Cosentyx pen was much better than with the Enbrel and Humira pens. In this post, I want to focus on the syringes, in case anyone is facing injecting for the first time.   Once my insurance approved the medicine, my home delivery pharmacy shipped my medicine. To my surprise, they sent me syringes instead of auto-inject pens. I never open my box until the day of my shot, so I didn't realize until it was too late.   I have alwa...

  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 don't know if other Ankylosing Spondylitis fighters experience worsening symptoms during cold weather, but I certainly do. For several weeks my left hip has been keeping awake at night. I can not lay on my left side due to the pain. Which leads me to try to sleep on my right side all night. Some nights my right hip feels like it may start hurting and I turn to my back. However if I sleep on my back very long, my lower back feels like it ceases up. Plus as an embarrassing side note, I snore horribly if I sleep on my back. At least that's what my husband tells me. Another incentive to not sleep on my back.   The other day a friend called, I told her how bad my hip was hurting. She said "oh, so you can't walk with it hurting so bad''. I told her actually I can walk, it's the only thing that helps the pain. She seemed confused. I can't explain it myself. It really doesn't make sense to me either. When the pain gets to a 9.5 on a 10 scale, I can no...

  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 ...