Health wise, I'm currently on Sulfasalazine to treat the actual "disease". It's normally used for patients with severe Rheumatoid Arthritis. If I do in fact have SAPHO SYNDROME, I've exhausted all the medicines used to treat it. So my doctor is just grabbing at anything to see if my body will accept it.
I haven't been sleeping well at all. Just last night, I didn't actually start to fall asleep until 7:30 am. I've been given muscle relaxers to help put me into a deep sleep. That dose has been upped because I'm still struggling to sleep. I've also been given Cymbalta to treat for the pain. Apparently, it has made huge strides in relieving pain for patients with Fibromyalgia . All I've noticed is that I am able to take one less pain pill than I normally do.
My hair has been falling out again, like as if I was taking Methotrexate. I'm not sure which medicine is causing that. But it makes me sad.
After my last visit with the doctor, things took a dark change. During the visit, it was all routine. Answering questions, having my bones looked at, and of course, the painful poking of the rib. This time, my doctor pressed harder on my rib than usual. A few hours later after I got home, the pain increased so badly, I was screaming and crying. That was 3 1/2 weeks ago. During this time the pain has been so bad that I can no longer stand or walk on my own. The stairs are impossible. Luckily the bathroom is not very far from my bedroom. I either hold onto the walls or crawl to the bathroom from my bedroom. I scream and cry getting there. Showers are almost impossible. My mom will put a stool in the tub and a chair by the sink. I avoid showers now until the last possible moment. I just sit in the shower and sob. The slightest movement just kills in pain. My mom has worked endlessly in helping me back to my bed, fixing my pillows, running up and down the stairs with food, drinks, and ice-packs, and staying up at night with me until I'm relaxed enough to stop crying from the pain. When people ask what they can do to help? It's helping my mom. Help her by cleaning my bathroom, fixing my bed, bringing me meals, drinks, and Ice-packs. Basically, giving her a break so that she can take time for herself and not be tied down because of me.
On Saturday, after several phone calls during the week from my mom, a Home Health Nurse came to check on me. She put in a request for Physical Therapy to come and help me move better. There is a concern for blood clots because I'm not moving enough.She checked my blood pressure, heart rate, and temperature. All where high. She said it was a good time to take me to the E.R. if we wanted. Her next thought was to get back in touch with my Surgeon who removed part of my rib back in November.
She agrees with what my mom and I have been thinking all along. There is still infection going on. She thinks it's been encapsulated inside the bone. I asked her if it was, would it be hard to show up in an image or white blood cell scan? She said it would be very hard to find. The Nurse also said that, when the doctor pressed on my rib so hard, he could have ruptured the encapsulated infection which is why I haven't been able to stand or walk on my own.
My mom and I have both been thinking about our options. We finally agreed, to put a call back to my Infectious Disease Doctor, as well as the Surgeon, and see what they suggest. If after those calls, we don't like what they suggest or agree, then I will scream and sob all the way to the hospital and see what they can do. I can't physically go to each of these doctors for observation. I have to pick the best option for me, because I'm only doing the stairs once.
In the meantime, my feet and hands still swell during all this. Fevers are as present as ever. The dizziness is just as bad, and it takes all my energy to focus on typing this up. I have several breaks. I watch reruns of shows because I need the distraction, but it hurts my head too much and makes me sick when I have to put so much concentration on new shows, and reading. In fact, as if I were a little kid, my mom has been reading out loud to me a book I've wanted to read myself, but can't at the moment.
I'm so exhausted with handling the paperwork for Social Security and the States Financial help. So many forms. So many papers. I can't do it all. A neighbor of mine is looking into finding a good lawyer to help me with this. I just need someone to be my voice. To take care of everything. It's all the phone calls, and knowing which document goes where that exhausts me. Because I barely have a voice, it's hard for people to hear me, and its so straining on me. I get frustrated at the hoops I have to jump through when I know there are people abuse the system and have now made it hard for people like me, who actually need the help.
I feel so frustrated with how things are right now. I so dearly miss my life. I miss working, going out with friends, finishing school, taking a shower without crying. Some people might be thinking, well why doesn't she just suck it up and move more? The answer is, the little movement I do, is sucking it up. It takes all that I have to get to the bathroom. Or to even sit up in my bed.
Most days I'm ready to throw in the towel. The longer I'm in this bad state, the more I get frustrated. Sadly, there are a few of my friends and family who I don't think support me or very well at least. The ones who don't show much support just truly don't get it. But the ones who do support me, I'm just so grateful because even if they don't fully understand it, I know by their actions how much they're trying to. My sweet Aunt, has been sending me emails with thoughts of hope and strength. A few weeks ago, my nephew who at the time was serving his mission in Vera Cruz, Mexico, had written me with some scripture references. It was so sweet, and just what I needed to hear to help me get through these awful weeks. Little did he know, that a few days later, my Aunt had sent me one of her emails talking about the same scriptures that my nephew had sent. She didn't know what he had sent earlier either. With both sending the same thoughts without knowledge of the other was a huge blessing to me. It was a powerful strength that told me, I can get through this. No matter how hard, and how much I cry, or get frustrated, those letters give me strength to know, that I'm not alone. I have spiritual help and love to help me with this battle. Whether anyone reading this, believes or doesn't believe my religious views, just know that it does give me comfort to believe.
It's so hard to be sick for so many years, without much hope. During those years, I get to watch my friends and family live their lives. I see them have families of their own, travel, start new careers, go on all these wonderful adventures and I'm just sitting here, not able to do any of it. I've had people tell me " well, you're sick all the time" as if that's the reason not to stick around for help and support. That's what a chronic illness is. There is no good time of wellness. It's an everyday illness. And it's very straining on all aspects.
Posting these blogs are my way of releasing my thoughts out loud. I personally don't believe in talking to a Therapist. I don't need to explain 11 years of illness to a stranger who no matter what they say, will never really understand it. No one can unless you're living it. That's just one more person to look in the eye and really know, that they can't relate or help. So these posts are my outlet. I understand my feelings, my bad days, and my good days.
In the next few days, I'll likely be taken to the E.R. I'm hoping the doctors I've put calls into, will have a better suggestion. With my fevers still, and everything else I just really hope these doctors will get on board, think outside the box, and save me from a painful trip to the E.R. My experiences in the past, is that the E.R. will only treat me for the pain and then send me home. But if that's what it takes, I'll scream and sob the whole time there.
I don't know why this disease is such a mystery. I don't know why any of the medications I've been on don't help. All I know, is that I can be in a dark corner with this tremendous pain, or I can push myself to my ability in getting to the bathroom, taking a shower, and find joy in life all while being in tremendous pain. The pain, tears, screaming, and frustrations are there anyway. Finding humor in a random tax audit, or in life, won't change anything.
Here's to hopping for better days. :)