Had a bad week, but "I'm still standin'..."

(the title- the part in quotations- is from an Elton John song which I love)

In the past week, there have been a few times it was borderline if I should go to the hospital or not. Isn't that crazy? 

One time, last Wed I think it was, I had an over-swelling of lymphedema and could barely walk, and it gave me a fever and I thought I had cellulitis again. What I have also had before is Erysipelas, which is similar to cellulitis. Robert wanted me to get checked out at the hospital, I wanted to wait it out. I know the danger signs beyond what I already had that would make me go in. Sometimes I've seen my body fight this and win, and I want to avoid antibiotics whenever possible because I have so many antibiotic allergies. I stayed home and eventually, after about three days, my body fought and won. But then this weird rash, which has existed for months on my skin grafts, broke out in many other places. Again Robert thought I should get a check at the hospital, because it was accompanied by really awful weakness and this coughing I've also had for months. I was completely weak, it was a bit scary. Too many things at once. But I stayed home. I had an appointment set with my GP today, so I wanted to make it till today and stay out of the hospital. It's a very bad place for me these days, so many bad memories; some memories distant but ever palpable, some still too close.
Also, when one feels so awful, sitting around for hours on hard chairs waiting to have doctors see you is not my idea of giving my body a rest.

After a horrendous 9 hour migraine which I couldn't take anything for kept me down for yet another day, I was DONE. Robert thought it was brave of me to weather out the migraine instead of going to the hospital to get the IV cocktail that helps. I call it self preservation. I did take a few too many sleeping pills, though, to put myself out from the migraine. Don't worry, not *that* too many.

But along those lines, the "things have been very dark and scary emotionally" lines... yeah. Things have been very dark and scary. I think about death a lot. I am getting help, though, but it's not enough. I am seeing my psychologist from years back, and she's good, but I need a psychiatrist. I went to see my loved healer, Miriam Maslin, about an hour trip from me a few days ago also, trying to reach out for more emotional help. While I do feel the session helped me, she also feels very clearly that I need a psychiatrist to manage my medicines. Things are off, *I'm* off. I tell her things (for probably 15 years now) that I don't tell anyone else. This time she felt she was out of her waters... first time ever.
I'm upset that the psych hospital that I showed up in the ER a few months ago never followed-up. They said I'd have a psychiatrist within a few weeks. That was more than two months ago.

I need to follow-up on that myself, I know, but it goes into the category of Too Much when....

I have literally TEN different physiological (not psychological) tests to do in the next few months-- throat tests, scans- two different kinds for my two different leg problems, CT's, MRI's, blood tests, yadda yadda, and I can barely get those organized. I said to my friend today, what if I just don't do them? Well, OK, I may never get my singing voice back, the click may never get fixed. OK, let's say that. But the legs stuff, the PVNS follow-ups, the blood tests? I may not be walking by 70 (or earlier, Gd forbid if the PVNS comes back) if I don't do these follow-ups, and the pain will just get worse. And I may just keep feeling crappy if we don't have any blood tests to have insight into what may be going on. Next week it's an anonymous dermatologist for this crazy rash... and probably a swab of it to see if it is fungal or infectious. Then oh happy day to a women's doctor because of lymph drainage problems and the erysipelas (look up the link I gave you in the first paragraph).

And Passover is coming and I have a huge house. That goes with a thank G-d as well, but it's stressful.

I want the life back where I wasn't a patient. Being a patient is a full-time job, but without the joy.
(except when my friend Ken sent over Ben and Jerry's peanut-butter cup ice cream because I was feeling so crappy and he wanted to cheer me up! That was indeed joyful. :)
Oh, and the fact that I can watch Mary Poppins with my kids because I am home a lot, and I can spontaneously take them out to the new "Beauty and the Beast" one afternoon.... yes, there is good in having lost my ability to hold a job. That sounds weird, but you know what I mean.

I *may* go play in a very amateur orchestra next Thursday if I'm up to it... I've been practicing a teeny bit. One day at a time.

The one time this week I felt well,
I got dressed up to go to a dear friend's wedding (just the ceremony).
Still feeling pretty well now, the same night...
let's pray Shabbat will be good!
We have some special guests coming (Dev!! Shana!)