Long Time No Update

On December 2, I’ll be at 2 years post transplant.   In some ways it doesn’t seem it’s been that long, in other aspects it seems longer.

I had another blip in my lung function again but rebounded again.  I guess this is just an annual dip due to weather changes.  Which I’m not really surprised by.  I’ve always had sensitivity to changes in season.

They started me on a long acting inhaler & then gave me a steroid burst.  It opened me up & my steroids now are less than they’ve been in a long time. This is good but I’m still having significant shakiness & wrist pain which has impacted my ability to type or write as frequently as I want.  I’m trying to find work arounds but it just takes practice & patience I really didn’t have until a lot of other stuff was out of the way.  Plus many of the topical ointments at my local dispensaries for pain relief have botanicals that I can’t have, but I think I found a few things that might help & are safe for me to take, so that’s good.  If they work out, I’ll review them.

In preparation for starting grad school for my Masters In Social Work in mid January, I had a round of neuropsychological tests done so I can get my accommodations in place.  It was exhausting but enlightening.

My first practitioner only ran partial testing & she was very biased about a few things I disclosed as part of my medical history.

She told me I would fail out of school, even with accommodation. I’m going to find out from someone on my team who I can report this to at the state level. I don’t want her actively harming or being so cruel to others.

The most recent (& second opinion) was validating & much better.  There were a few communication issues at the start (slow in scheduling) but I had my transplant social worker help me with that, which helped.  The doctor I used was very thorough & basically mapped my whole brain.

He also said that I will do well with accommodations &  what I need in the way of them are pretty straightforward.

He also said social work plays to the strong part of my brain so he thinks I’ll do well on the job and in placements too.   Total contrast to the dehumanizing way my initial testing was handled.

Even though I had to pay out of pocket, I’m REALLY glad I used this professional because this had been eating at me awhile.  It was a combination of factors that worsened my ability to be able to adapt like I had before. I knew it couldn’t be helped but really wasn’t even sure where to begin as far as to what accommodations I’d need or would be helpful so this will get me headed in the right direction.

I just received the results on the 19th & won’t share them publicly but they were very validating.   However, if someone has a question or wants to know who I used and how it was helpful, then I’ll be happy to discuss offline one-on-one.

This was something I needed to do for a few years too but it just kept getting pushed back for more immediate pressing issues.

It feels good to have it done & have some guidance as I’m also looking to try to get back to work at some point as well.  I will most likely need accommodations for that too.

My next step is to meet this Thursday with disability services at my school to put things in place there.  I also need to get the latest update from my long term disability company about next steps (also on the schedule for this week).








2 thoughts on “Long Time No Update

  1. ALWAYS good to see/read your updates! Be well, my friend!

    Liked by 1 person

    • Thanks DAP. I wanted to thank you about sharing about the Transplant buddies founder & posting her obit. I was so sad to hear she had died, but I think it’s good you tried to let ppl know, btw. I hope you’re doing ok.


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