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September 23, 2021 - Hep B Blood Test

    So I relapsed twice in the last 2 months and my emotions are getting to me. I about cried on the way to get my blood drawn and then straight rage answering the receptionists' questions because she was new and learning. I feel like a mess and trying to stay positive is proving tough today. Hold on tight, today's gonna be a bumpy ride.

    I was aggravated to begin with. I had to go to the hospital that is full of Covid cases right now. The lady who brought me a wheelchair told me I could walk. I had to explain I had an MS relapse and would fall without assistance. They wouldn't let my husband assist me even when we explained he is my caregiver, which annoyed me further. Yesterday my occupational therapy was canceled and the therapist has all next week off too. Kurt and I speculate it was due to Covid.

    There is one silver lining. I am one step closer to getting my infusion. I had to harass my neurologist every day this week to get it going. The bad news is they don't know if my insurance will cover it. I may have 1 1/2 weeks left of the Vumerity left so I'm praying the insurance covers it. 

    My neurologist also finally sent my referral to an MS Specialist. I'm going to use that appointment to get all my questions about MS answered and see what I can do to get the HSCT treatment. These last 2 relapses have been hell. I don't ever want to go through it again. I'm close to "firing" my neurologist. I feel like his office is very unorganized and doesn't make the patients a high priority. Let's face it, I need a new primary doctor, a new neurologist, a new gyno. New everything. I will get there. I just need to get through this and try not to stress. Stressing is the worst thing I can do.

Update - So they said they sent my referral to Portland OR Institute of Multiple Sclerosis. I'm looking forward to it but I know everything is stressing Kurt out. I wish I didn't have to depend on him for everything but I can't trust anyone else to take me and not make it about them and stress me out.

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