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

  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 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.                    ...

  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...

  Frustration.... such a little word but it carries so much meaning. Frustration, it is what I've felt for the past week, dealing with medical insurance renewal. Yes, it's that time of year again, choose a plan. If only it was that simple.    Having a rheumatic autoimmune disease, Ankylosing Spondylitis, entails many doctors and many medicines. Therefore, I need an insurance plan that covers a majority of what or whom I need to fight this disease. It is no easy feat to find the "perfect" plan. There actually are no perfect plans available to me.   I resort to finding the insurance plan that covers the specialty drugs I need. Luckily, that plan also has my primary general physician, my neurologist, and my opthamologist included as in-network doctors. The only doctor it lacks is my rheumatologist. Oh, and it also lacks coverage for the folic acid I need to take daily to combat the side effects of the chemotherapy drug. The chemo drug makes my hair fall out, unless ...

  I'm not sure if it's just me or if everyone experiences this, but there are days I don't want to leave the house. It can be days before a scheduled appointment or task, that I begin to dread the thought of going. There are days that I hurt and ache too much to go anywhere. Those aren't the days I'm describing. It's just a mounting sense of dread that holds me back. I can schedule something and even look forward to that event, but as the event draws closer my eagerness turns to apprehension. My mind is consumed with "should I cancel" or "maybe I can leave early". I begin to question myself as to why I even scheduled the event in the first place.    I had my annual mammogram scheduled for 2:30 yesterday. Last Friday, I began thinking maybe I should cancel. My thoughts were, I have had a mammogram every year, so I probably could put it off until next year. I mean all my prior mammograms have been clear, no lumps or cysts. Plus, my mom doesn...

  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...

  I didn't want to celebrate my upbeat energy after my first Cosentyx injection. I was fearful it might only be a placebo effect. This past Monday, I had my second Cosentyx injection. My doctor wants me to do a loading dose of one injection per week for five weeks. After the five weeks I will begin a monthly injection schedule.    I am still trying to hold back on my excitement, because I don't want to loose hope. However, I must say after this second injection, I feel so energetic and alive! I told my husband I feel more like myself every day. It is a feeling I am slowly remembering, it's so familiar. It has been a very long time since I felt like myself. It's scary that my life had been so consumed with pain and fatigue, that I had almost forgotten what it feels like to be me.   I am making progress on my housework and looking forward to the upcoming holidays. I know the previous few holidays have been exhausting. Maybe this year will be filled with happiness a...

  I'm looking forward to today. That's a huge thing for anyone with an autoimmune, degenerative disease to say. Most mornings my attitude is more guarded, since it's a toss whether it'll be a good or bad day. However, based on my day yesterday, I have hope. Hope....is amazing!   Day before yesterday, I received confirmation that my quantiferon TB test was negative. If you've read my blog for a while you know I had received an inclusive result on my TB test. I researched what an inclusive result means and basically it could be due to tech error or due to a person being immunosuppressed. Both of which sounds reasonable in my situation.   My doctor didn't want me to begin my new medication, Cosentyx, until I received those negative results. So finally I had the all clear to begin my Cosentyx. I injected around 5:00p.m. Monday afternoon. I really like the "sensoready" pen. When I was on Enbrel there were times I had trouble getting the top button to ac...

  Good news.... my insurance approved Cosentyx. That's step 1 of the process. Now to follow through with the other requirements.      Step 2- My doctor wanted me off the Enbrel at least two weeks before starting the Cosentyx. I've actually been off Enbrel three weeks. Each week that passes I hurt more. The last few days my hips have hurt terribly during the night and for about an hour upon rising. So I am excitedly, anticipating starting the new medicine. If you're a biologic medication user you know how crazy that sounds. Even with the doctor's warnings of IBS risk, cancer, infections, etc which the medicine can cause, I need something to slow the hip degeneration. When I hurt like I have the past few days I imagine this monstrous disease is progressing toward taking more away from me. Walking is a gift. I try to think how blessed I am to still be mobile. Never take anything for granted.   Step 3- Due to the medication risk factors, my doctor requires I hav...

  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...