Today is Halloween. Tomorrow I will have been listed for 8 months. Next Monday, I have my next check-up.
Then on the 9th, I’ll be in Baltimore to discuss dual listing with John Hopkins.
I often dress up for Halloween.
Today I went to rehab in a cat onesie which gave the staff at my lung doctor’s office a smile.
I also had an updated evaluation since I’ve been in pulmonary rehab (again) for about 3 months now.
My heart rate was high today as it sometimes gets, so I had to go slower, take a few more breaks. Yet, I was able to finish the session.
The only thing I had to skip was squats because they usually cause me to spike a little even on days where my heart rate is behaving. I settled for what I could do.
It’s frustrating but I am glad for rehab because it gets me monitored (which I feel better about when it comes to exercise at this level) & gets me out of the house for a little while. I was having more pain today, but I felt less sore after my session than some days after I finish. At least for better or worse (knock wood) my oxygen levels have held steady for awhile & I’m not past 8 liters yet for walking around or taking care of myself. But my large tanks still only last about an hour or hour & half so that really puts a damper on going out for long, even though I have a double cart that I can haul two tanks at once.
It’s been almost 4 months since the last call. The situation itself is taxing, but I’m doing my best to distract myself.
That said, sometimes my attention just isn’t there or my energy. All considering, I’m glad I’m waiting at home versus some place else like the hospital.
It’s just I’ve been in this holding pattern for what feels like an excruciatingly long time.
As happy as I am for my other friends who were listed & have gotten their transplants, I sometimes feel a bit left behind & like I’m stuck & can’t move on.
There are people I know that are sick or who recently have died & I couldn’t or can’t really be there to support them or their loved ones when this has happened because I can’t be outside a 2 hour radius.
There is activism for organ donation, research, & other causes that I can’t commit to except for raising awareness on social media because I don’t have the health or the energy.
That’s hard for me because I’m a very cause driven person. I enjoy volunteering. Always have.
Yet I’m grateful I can still go to lunch or breakfast occasionally with friends even if that’s one of the few things I have left, it’s still an important one.
National Novel Writing Month (NanoWriMo) starts tomorrow & I’m participating again this year. Last year I wrote a 50,000 word novel in a month.
I’m going to try it again this year.
It will be more of challenge but I’m tired of forfeiting things or putting them off due to this holding pattern. This is one thing I can still do that I want to & that I’m looking forward to.
I should be outlining & maybe I will tonight later, but at least I have my genre & concept thought out ahead of time which I didn’t last year.
I have a great local crew that even if I can’t turn out physically for write-ins & get togethers still cheers me on & supports me year round.
I have friends & writing buddies I remember from last year that I’m reconnecting with & a few new friends that are going to take their first plunge this year so that’s always fun.
That said I wouldn’t be angry if I have to bail at any point this month if it means I’m moving forward in a new way.
We’ll see what transpires. I really do want things to be different this next month, but I’m not holding my breath…
I know I NEED to go to Hopkins, but part of me really doesn’t WANT to…but if I didn’t at least go down for a consult to see what their thoughts are, I’d regret it.
Yet, part of me hopes that I will get a call before the 9th so I don’t have to even go…