When I got the diagnosisof Arachnoiditis, I was at first, completely ignorant. Very quickly upon doing some internet research I learned that this was bad, could potentially become very, very bad.
My husband & I agreed that we would rather have me the way I am, doing little to very little activity, to keep my condition hopefully from progressing faster.
We visited my neurologist after educating ourselves and he told us that my condition was stable and he did not think I would progress. He MIGHT be right if I continue to do nothing. I do know that sometimes doing even a few simply stretches, walking a short distance, spending more than 20-30 minutes at the grocery store or sitting in the wrong chair causes me to have a “flare”. And from joining groups of people who have this condition & more reading, I have learned that I will probably progress and that the more flares I have, the worse and probably faster it will come.
So, I’m scared! I don’t think the medical community knows enough about this disease to give any one of us an adequate prognosis. And now, the government agencies are trying to ban pain killers. If I am having a flare and need help, I am going to need pain killers (strong ones). I’m scared I won’t be able to get them or afford them. I’m scared that the thought goes through my mind that I would rather die than live day in and day out in a constant state of pain.
This pain is not fixable! It is not going to get any better, only worse. I haven’t even been doing anything and the past month or so I have noticed my right ankle bone getting more sensitive to the touch, random twitching in both of my legs and the few days a burning feeling in my right butt cheek!
When the Dr. told us at first that he did not think I would progress, we were relieved. Now, I’m fairly certain that isn’t true. But, I was relieved that maybe I wouldn’t have to deal with the loss of bowel & bladder control or eventual paralysis! I was grateful that if I could stay where I was at, I would be grateful. And I will be grateful for that! I am grateful that I am not as bad off as so many others who cannot get relief and who cannot find Dr’s to believe there is anything wrong with them and that they do not need medication or help.
I am going to seek the help of a therapist. I need sometime to talk to! I mean I wake up & go to sleep thinking about this. But no one wants to hear me talk about it and my worries everyday. And I get that, who would, it’s depressing and overwhelming and tiresome. It is simply exhausting just having the worry on my shoulders every day.
I can’t do for myself without being punished by pain. I have decided that if I get approved for disability, I will use that mo eye to try stem cell therapy. That is the only possible hope I have at healing I believe. Beyond sheer luck and the grace of God!
So, now that I am restless with the ida of being stuck in a chair (albeit only certain chairs) or a bed, BUT still having control over my bowels and bladder and NOT being paralyzed – I wonder if I’m now asking/hoping for too much to be healed further. I’m not bargaining, maybe at times begging, yes, for God to help me! But is to be healed asking too much or should I simply be satisfied with a “stable” condition.
I hate that I have to depend on my husband so much! I’ve always been independent and now I feel confined and quite honestly, defined by this disease!
So, I need to ask forgiveness, forgiveness for asking for too much is what I am feeling. I sit here knowing so many are so much worse off and need so much more help than I do. Forgive me Lord for asking so much….
I call my life painful, but perfect now! One of my favorite songs stays on my mind “every rose 🌹 has its thorn!” “Yeah, it does!” All my dreams came true finally! Finally found a great man, 2 healthy children, but here I am with the thorn of arachnoiditis spoiling it all – painful!