Tuesday, May 3, 2016

Chronic Whirlwind

I had an appointment with my Rheumatologist this week. It seemed quite senseless and I told him so when he walked in the room. The prednisone I am on for my breathing issues has miraculous affects on my autoimmune disease. High doses of steroids suppress the immune system and the immune system stops attacking your body. Whatever that means, to me it means less pain, that's all I know. My pain has been very well controlled this week and sure feels good. The best part is no pain at night which makes sleep somewhat easier even with the steroids on board which can make you hyper and not able to sleep. I guess I'm somewhat fortunate with that side effect leaving me alone.

I had my list of written questions ready for my Rheumatologist when he walked in the room. If I don't write them down I forget most of them. In between appointments I always take notes on my phone of any new or worsening symptoms. If I don't keep track of changes I forget what went on in the few months since my last visit. I have new and worsening arthritis that I needed to talk to him about. I am always amazed at his knowledge as to what is going on with me. I ask him a question and he always knows what is causing the problem. Its nice to have such a knowledgeable doctor who is able to figure everything out without batting an eye. His explanations always make sense because they are real world terms and not medical terms. So here we go. I have been having more issues with my jaw and he said the arthritis is in there now. I told him I didn't want it and he smiled and smirked and said, "I can't change that." I told him, "But you're the miracle worker." We both laughed. We have to keep laughing. We moved onto the right foot. The big toe has been swollen and painful for some time now and I was not thinking arthritis but guess what? Yup. My toes are going numb and it is affecting the nerve at the base which is causing the numbness, pain, and swelling. He explained it as the arthritis causes swelling and the body tries to fix it which in turn causes collagen to buildup around the toe that pinches the nerve. Makes perfect sense. Of course my next question, "So it will get better over time?" Wishfull thinking as usual. Answer, "Nope."  Foot doc, steroid shots, possible surgery to clean it out. Ughhh, not what I wanted to hear at all but it is what it is. When you are chronically ill you almost never hear what you want to hear. Sigh. Next, dry eyes are worse which is from the sjogrens and the fact that the punctal plugs that I had in my tear ducts fell out so the dryness is bad again. I need to go back to the opthamologist and have new plugs put back in again. This is another big decision because I can have the kind I had in before knowing that they will fall out or I can have permanent ones put in. I guess I will see what the opthamologist suggest. Then there are my teeth that continue to give me one problem after another but I didn't discuss this with my Rheume because doctors don't deal with teeth issues. Sjogrens also attacks your teeth because your mouth is dried out. No taste buds, tooth decay, etc. it never ends. 

This probably doesn't seem like much to the real world but when you never feel well and it never ends it is extremely stressful. I want to throw it all away and forget it but I can't. I must deal. When I look at the big picture knowing I need appointments with and opthamologist, podiatrist, dentist, not to mention the routine appointments with the endocrinologist, pulmonologist, and rheumatologist it gets very frustrating and overwhelming. Not to mention the stress of the expense and the fact that I don't work. It can eat me alive at times. When I allow my head to get too out of control over it all I have pull back and break it into manageable segments. One issue at a time. I have to figure out what problem needs to be addressed first. What is giving me the most problem at this certain moment? It isn't easy to discifer this when they all feel pretty equal on my problem meter. It's strange when you have one thing after another how no matter how many issues you have your brain is able to put them in a corner and tell you none of them are a big deal. I tell myself all the time to forget about it but it isn't that simple. I wait and wait until I am suffering in the worst way possible before I call the doctor. Like it's all going to magically disappear while I struggle to ignore it. Sadly it doesn't go away as things continue to pile on top of one another. I always wonder if it will ever end. The walls might be crashing in around me but I must keep the control and stay in the drivers seat. When I get down and out I pull myself back together because I realize no one else is going to do it for me. Writing this makes me realize I will start with the simple fix and move on from there. Today I'll call the opthamologist and get that ball rolling. When that is done I'll regroup and decide what issue needs to be taken care of. Breaking it down makes it much more doable than when I look at the big picture. Breaking it down makes me realize I can do this and I will. I hope this helps you realize you can do it too. Press on my friends.

God Bless!


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