Monday, November 26, 2018

Chronic Illness Update - Not Great

I really haven't been doing well lately. I have some instability in my neck which is causing my vertebra to press into my spinal cord. I also probably have something called a Chiari Malformation, which is where the bottom of the brain slips down into the top of your spinal column, which means it is being squeezed. All of this is causing a lot of neurological symptoms which are really debilitating right now. I have double vision, which makes it very hard to read, and I am so dizzy that sometimes my mom has to help me walk back and forth from the bathroom. I'm constantly dizzy, but it isn't always that severe, and sometimes I can get around the house by holding onto the walls, and on a really good day I can just walk normally, but I have to be really careful not to fall. The dizziness is really bad right now.... I also have a constant ringing in my ears, which is driving me crazy. We're trying to get my insurance to cover MRIs of my neck and brain, but they are stubborn.

Some better news is that I now have physical therapy every Tuesday and Thursday, which is so wonderful. I am getting stronger, and some of the joints that wouldn't stay in are doing better now, Also my physical therapist is just an awesome person, which makes me look forward to PT even more. Over all I'm sleeping better. I struggle with insomnia and sometimes would go for days without sleep, but it has gotten much better lately. I'm really happy about that. Also sense it has cooled down I can go outside without my heart rate jumping way too high and almost fainting. My environmental allergies are getting better because of the shots I get every week. My Mast Cell Activation Syndrome (An allergy disorder where you react to all kinds of weird things, including sometimes reacting with no trigger), is still a mess, but I am on the right track with a new medication to help.

Sadly I can't play most video games right now because the movement of the camera makes me motion sick because of the dizziness. And I can't really do much modding because of the double vision. So there won't be any mods for a while unless something changes. Sorry about that.

Anyway, I just wanted to update and let you know why there won't be any mods for an unknown amount of time. If you are the praying type, I would request a prayer for my medical team to figure out what to do about my neck. If you are not, maybe just some positive energy. :) I hope you all don't mind the current lack of modding and communication. I'm doing the best I can, but I am struggling. But I'm probably the most optimistic person you'll ever meet, so I have lots of hope.

2 comments:

  1. You struggle so bravely, with strength, dignity and so optimistic. I want to say, that I warmly supporting you. You are greate, and I hope you the victory will be yours.

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  2. Thank you so much Rineke! Hearing this is really encouraging, and I am glad to hear from you. I always smile when you post a comment, because I recognize your name and know that you've been following this blog for quite a while. Thanks!

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