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My Fear of The Future

  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 improvements. It scares me. I think about the pain and stiffness I have at the age of 48 years old, what will 68 look like? Will I be able to walk? Will I be so frozen stiff I won't be able to care for myself? I already have trouble bending to pick things up from the floor. Last night I couldn't bend down far enough to unplug my phone charger. I had to ask my son to do it for me. I know I can make modifications in my home to assist me but there are days I long to be a "normal" person.

   I apologize if this post is too gloomy but I felt the need to let these feelings show. Perhaps you're facing the same future as me if so I hope it comforts you to know there are people in it with you. You are not alone. We all have days like these. There will always be a brighter day, it just hard to see the sunshine through the rain.

  Keep fighting my friend!

Gentle hugs,
Bamboo Spine Gal
#fightingmybodydaily


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