24 Down, 36 to Go

Ah... here's some deep nostalgia. I'm the one in the blue dress.

I've been doing this now for five weeks, and I have to say that sometimes it's harder than it was in the beginning.

I'm no longer all excited about it.
I thought that by 20 treatments, there would be improvement. It turns out that I'm only expected to start feeling real improvement at 40 treatments.

Not so much fun when you go to the doctor and he asks you how you're feeling and you respond "lousy" and he says "oh, good."

I had a dizzy spell in the chamber one day, but I suspect it may have just been exhaustion. My blood pressure wasn't low, and I certainly don't have low blood sugar. The doctor -one I hadn't met before - a young guy with tattoos-  looked me over and said to let him know if it happens again.

My pain levels have been through the roof this week. Up until I started the treatment, I was using tramadex 200 OD (means it lasts 24 hours at a time) and that was pretty much handling the pain. Now I'm taking an extra 50 every night - night is the worst time pain-wise - and adding ibuprofen (600) or 1000mg optalgin (if you're in the US, it's banned there because some people respond badly to it, but it's another NSAID) at least once a day, and frequently twice. I spoke to my psychiatrist (who doesn't have one of those?) and she prescribed ritalin to help me stay awake - it's not ideal, but it's better than falling asleep on the road, right?

My memory has been spitting out random nonsense, which is kind of fun. I was told that I may recover lost traumatic memories. So far, I've recovered memories, but nothing traumatic. Actually, the opposite. Some have been happy memories. I'm wondering if part of my "trauma" was saying goodbye to good memories. Realizing that I will never have a particular moment again sometimes hurts so much it makes me cry.

I felt that way when I left our last apartment. We moved a few blocks away into a bigger apartment in a better location with a garden. It should have been a 100% positive move, and yet, saying goodbye to the apartment that I brought my first two babies home to, the apartment where those babies learned to crawl and walk, the apartment that my husband and I came home to the very first night we were husband and wife - it was hard to leave, even if it's to bigger and better things. Saying goodbye has always been very hard for me, even to things.

In other news, my baby (#3) had a fever today, so my husband, baby, and I had a romantic date at Terem (urgent care), where they tortured her with a catheter. It was pretty awful, and I'm glad I wasn't in the room, because her crying made me sweat and cry from a good distance away. When the doctor tried to explain something to me later, the blood drained from my face. I doubt I would have passed out - I've never passed out, but I was about as close as I get to that.

At least the preliminary results seem to be ok. She has a rare kidney condition which may make her more susceptible to kidney and other urinary tract infections, so if she has a fever, we have to check that right away. My recommendation - don't have kidney conditions. (yes, that's supposed to be sort of funny).

And again, it's late (nearly 3am) and I'm at the computer instead of in my bed, so I'll sign off.

The Play's the Thing

I haven't posted in a while - I'm now up to treatment 21, having skipped Wednesday last week.

Last week was crazy and amazing. I was in the play Raquela, performed by Women in Theater. My role wasn't particularly big, but being a part of something so big and wonderful was amazing!!!

I was in the theater all afternoon until 11:30 Wednesday and Thursday, running on insane adrenaline. I went to the chamber on Thursday, which was tiring, but necessary - Yair, the nurse who seems to be overall in charge of... well.. everything, would only authorize a Wednesday off, not a Thursday, because I'd then be out of the chamber three days in a row.

Sunday, my husband and his oldest son flew down to Eilat, which means I'm parenting solo this week - another tiring thing. The overall fatigue is pretty awful, and my pain is still no better, so it's hard to say anything's changed, but I'm only 1/3 of the way through. Today was the first day I've felt a little hopeless, but I know I have to keep on keeping on.

I am looking forward to Friday.

Day 16 - Free Flowing Oxygen

Today I tried the free-flowing oxygen, and it was so much less tiring. I still had a rough day, and needed help getting one of my kids home, but I survived. (Though I think my eldest is grumpy about having been told that mac & cheese was out of the question because there wasn't a clean pot. I really must get her used to washing dishes in those situations - it would save both of us stress.)

Anyway, I'm wiped out. Night all.

Through to Day 15 - My Lungs Hurt

Yep, I feel like a ragmop, but not as furry.

Technically, it's not my lungs that hurt, it's the muscles around them. But geez, it hurts.

I'm suspicious that there might be something wrong with the oxygen process, as another patient mentioned that he feels it's much more difficult to breathe on the lower number side than on the higher number side of the chamber. I guess I'll mention that on Sunday, though I'm not sure it's true. On the other hand, they'd been moving us around a lot, and I had the same seat for the past three days, and until then I hadn't had this kind of pain.

I spoke to the doctor, and I'll be getting free-flowing oxygen starting Sunday. In the meantime, I'm absurdly sore, and breathing even outside the chamber isn't exactly comfortable. I hope that the two days off will let me heal.

People keep asking me if it's working, and I honestly don't know. Right now, I'm so sore from the breathing issue that I can't think past that. The past two days, I've pretty much looked like a rag.. or as someone once said -R-A-G-G-M-O-P-P- Ragmop!

In other news, I'm less than a week from opening night of the play that I'm in, and I'm both extremely excited and extremely nervous.

Days 12 & 13 - Go Ahead and Laugh

Every day, before starting pressurization, they ask us if we have various things - Cell phones, tablets, remote controls for cars. 

Remote controls for cars.

I think, what, I'm going to bring a remote control for a car, but not the toy car? That makes no sense. 

I mean, as long as you're still thinking like a 6-year-old boy.

It finally dawned on me that they were talking about the car remotes that you use to unlock real cars. 

To be fair, I don't exactly have one of those - it's integrated into the car key, but still... it took me over two weeks to figure out that they're not talking about toys.

Oh well... I hope this amuses my readers. 

As to how the treatment's going, I'm still exhausted. Someone brought over dinner tonight, and I can't even begin to say how grateful I am. Last night, someone else brought over doughnuts, which were also delicious and gratitude-inducing and I'm kind of a little teary-eyed about how sweet my friends are! 

Day 11 - Glory Days?

(I apologize in advance to anyone who saw last week's episode of Life in Pieces and is now associating the song "Glory Days" with it..)

Today, the treatment went very quickly. I was reading a new book, something that moves fast, and the time just flew by - I was shocked at how fast the treatment went.

When I came out of the chamber, I was greeted by this.


This amazing group of girls was singing, dancing, handing out sufganiyot, and I was suddenly so overcome with emotion, remembering mornings of singing and dancing at Frisch, my brief foray into the world of NCSY, and Simchat Torah the first few times I was in Israel for the chag... I remembered myself, agile, young, able to dance with the best of them (even if I didn't always know the steps), and there were tears in my eyes, even as I smiled and clapped. And declined an invitation to join.

I was lost for a few minutes in the "glory days" when I was a kid that age, with that kind of energy, and the sadness at the realization that even if I feel well again, I'll never be that young again. I'll never be in that stage of my life again.

And I drove home, came into my house full of children, cute, cuddly, demanding, wonderful children, exhausted and barely able to do anything for them, and I fell asleep for a while. The baby slept and the other two amused themselves. I woke up and pushed through the next few hours, and a friend invited me to a get-together.

I gave the baby a bath, and got her most of the way through bedtime, and by the time I left, she was asleep, #2 was on his way out, and #1 was working on getting herself to sleep.

And then I walked over to my friend's house. There was soft music, wine, snacks, soup, a group of nice women to talk to. It was fun. It was quiet. It was exactly what I needed.

My teenage years may be behind me, but I think I'm finally starting to be ok with that.

It's hard coming to terms with how much I missed out on in my twenties and thirties because of my illness, but on the other hand, the important stuff is there - I made friends, I found my one and only. Together he and I have made three incredible children. It's true that a lot of the things that could have been fun or interesting or special were things I had to miss out on, but I had my priorities, and I didn't miss out on the things that really matter.

And maybe the best is yet to come. 

One Sixth Complete

Two weeks down, ten to go.
The exhaustion is still a major issue. 

My oldest brother asked if that means I sleep really well...

The answer is nope. I sleep terribly.

This afternoon, I had super-crazy dreams, which I think is a good thing, because there's a theory that the proper way for trauma to be processed is in dreams. The interesting thing is that the dream I had was of being in Germany and meeting another family who spoke Hebrew. 

This really happened.

Before I was 18 months old. 

I suppose it's more likely that my mind is working on my siblings' stories - Part of the story is that the other family was also an American family who spoke Hebrew and somehow each set of parents made such a big deal about the others speaking Hebrew that neither set of kids realized that the others spoke English. Just weird to be processing a story I only heard bits and pieces of.

Other parts of the dream make more sense to me - the common one (for me) about looking for a bathroom and not finding one (meaning I really need a bathroom but can't wake up to get to one). There was scenery reminiscent of places I went in my childhood, stuff like that. Plus just some weird junk thrown in because that's how dreams work. 

Anyway, I think that the absolute crushing pain has settled a little, and now it's more about the exhaustion. My mood is better, but music is deadly right now. Every song triggers something, and there's a lot of crying. The music for the play I'm in is one exception - since it's all new, I only have associations with current things and current friends, and it's all "clean" in my head. 

I'm trying 80's music now, and it's both painful and cathartic. Catharsis is good, right?