I have just found out that the insurance company still hasn't approved the infusions as of yet. After missing 2 doses of the injections I take for the ra, it has been all I can do to hold back and ignore (ha-ha) the pain. I was so looking forward to today. I still have an appointment with my rheumatologist that I plan to keep, but no infusion today. No relief. They say that possibly Monday or Tuesday they may hear something. Some will read this and wonder what the big deal is. Others will completely understand.
Back in the beginning of December, when I was told I was to take one last injection and then no more until the infusions start, it would be a rough month. Especially with the holidays coming. I have been barely holding it together. Today I feel...just kinda broken and tired. And despite what I wrote about earlier this morning, very much alone.
When someone breaks a bone or has an injury, it is understood that they are in great pain. Over time the injury heals and the person usually goes on to live a pain free life. But during time when the injury is fresh, complaining of discomfort is acceptable, expected. I am so frustrated right now because I am finding it harder and harder to fight back the tears from frustration and hurt. The relentless hurt. I want so badly to say how much pain I am in. How tiny little joints ache and my eyes are heavy and hot because I have had a constant low-grade temp. I feel sick. But to look at me, you would never know. There are three people who I can be brutally honest with about how I am feeling. Even then, I am very guarded, worried that I may complain to much and turn them off. I hold back, a lot. I come here, mostly, to vent and to reach out. Believe it or not, I do this because I want others in my position to read these words and know that what they are feeling and thinking is not unusual.
I have not been taking calls. I don't really feel like talking to anyone. I don't have it in me to concentrate that long on what they are saying. Sometimes, I just get annoyed and it's not their fault. I know that the stuff they are saying is important to them, but in the stabs of pain I am fighting to conceal and not cry out from, it all seems trivial. Pain is a funny thing. It breaks you down. I cannot concentrate, tolerate much or form a sentence. It's been happening a lot lately that my kids are repeating back to me the crazy things coming out of my mouth. For instance, "Let's sit on the fridge (couch) so we can work on your shoes (spelling words)" WTH? Clearly, my brain is overwhelmed. I am overwhelmed. With pain I cannot say too much about. I don't want to be that person. The problem is, this isn't a bone that will eventually heal. This is constant and I just feel like I can't take another day. I had an appointment yesterday where the doc was talking to me and said something about treatment over the next 20 years or more. I felt my eyes open wide and wondered if he noticed. Twenty years, or more?
I know this isn't going away. I've read about it. Obviously, part of me was still in denial. Chronic pain forever. Misunderstanding, forever. Silence. Forever.
I suppose there are some that may read this and think it sounds quite dramatic. Good. Maybe it is time that we all start speaking up and out about what ra really feels like. What fibromyalsia feels like. In this moment, all I know is that some of the joints in my body hurt just as badly as that broken foot I had a couple years ago. How about if we all just cast up all our sad joints for 6-8 weeks as a reminder to those who need it what this is like.
I know that eventually, I will bounce back to a better place. A place where more than just my joints are comfortable. My spirit will be at ease too, because I will no longer be walking through the forest blindfolded. That is what this feels like. Like most things in life, there is no instruction book for how to move through this. I don't like the scattered feelings. The frustration. I don't like who I am. I need control.
So this post is pure vent. Because I am sick of editing IRL, how I truly feel.