Doctors, Drugs, Disability

Back at the doctor’s Friday.  I was hoping for her to be able to get

Ocrelizumab.  It’s not yet available.    There is a similar drug but it is not approved for my disease:

Rituximab.

It’s a 5 hour infusion and then in two weeks, another one.  Every 6 months.  So, here’s the thing, side effects.  I could get shortness of breath and they slow the drug.  I could get more colds and infections.  Long term use might lead to cancer.  And of course, death though rare.  I HATE  needles let alone I.V.s.  However, I think I am going to suck it up and try.  I looked it up and it’s chemotherapy.  Kinda  scary.  Also, it’s been around for years.  The problem is insurance may not pay as it’s off label so I may have to wait till next year for the Opera.   Has anyone used this?  What do you think?

 

The other thing is Biotin.  I had obtained it just before I was let go and at $148 a month.  It wasn’t happening.  There is a new source and it will cost $60 a month.  It’s worth a try – $2 a day. Apparently, this looks good. Anyone use it?

 

Now there’s other things going on.  I have had a hard week. I got rejected again for a job.  It’s one for which I should have been a contender.  It was exactly what I used to do.  I had to create two presentations for it.  I was notified late on Friday for Monday.  It was my birthday and New Year’s dinner, too.  I put in hours and it was good.  No go.    It was across the street from where I was and it was difficult for me to walk there.

So, at this point, it appears that I am no longer going to be able to work in corporate America again.  I have hit the trifecta – woman, older, disabled.  This is so wrong.  I can’t even begin to address this.

 

The doctor is also in NYC.  I couldn’t do it without my husband.

I have collapsed recently in the bedroom without hurting myself but scary.  My balance has also been wobbly.  The doctor says that’s due to my weakness, not the drug I take.  My fingers are weaker,  My walking has gotten worse.  My theory?  Not going out to work every day has taken its toll despite the gym.  And she agrees, stress of not having work is negatively impacting me.  She’s finally admitting stress can be a factor.  I deal with extraordinary stress.  I have just started counseling.  In terms of stress and we are only up to 2004, she thinks it’s a lot.

I asked my neurologist about going out on disability.  I expected her to pooh pooh it.  NOT!  She said who deserved it more? I have worked for decades.  I don’t want to do this. I am going to have to think about this.

On the upside, my brain is fine.  She says that will be fine and she’s never seen it change. See, when I am sitting down I feel like me.  She tells me this is me.  I think NOT!!

I need to reflect and move forward.

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