Monday, June 20, 2016

Not Quite the End

It's been over three months since I finished treatment and I can say with certainty that I am not cured. My pain is still intolerable without pain medication.

I'm still more tired than I should be, and I still tire out easily.

On the other hand, my thinking is clearer, my ability to organize has started to improve just recently, and I've had medical massages and started a Pilates class once a week, and the muscles which I've been holding tight for years -yes literally years - are finally being allowed to loosen up. As this happens, I'm discovering that some of my symptoms are more the residue of fifteen years of sickness than a continuation of that sickness.

Moreover, my understanding from Dr Efrati is that part of the healing process is long, sustained sleep. My almost two year old is not on board with that plan.

So the truth is that I've gotten better - I am continuing to get better- but I don't feel like hyperbaric was a huge miracle for me.

Wednesday, March 9, 2016

Sixty Finished

I have completed the sixty treatments that I signed up for. People are asking me if I'm better and the truth is that I'm not sure. I still need pain medicine every single day, and I'm still tired out by minimal activity. Pressure points still hurt. My thinking seems clearer, and I think my sleep is deeper.

On the other hand, for the first time in memory, I had a nightmare last week. I don't remember the content, but I woke up Yaakov and grabbed him. (He says. I remember nothing.)
I've also had some small muscle tremors lately, but I have no idea what caused them. They seem to be related to extreme exhaustion (which is my default state).

I will have an MRI in around two weeks. After that, I will meet with Doctor Efrati to determine what happens next. 

I think that there's a possibility that 1. things will continue to improve. 2. there has been some underlying improvement, but 14 years of clenched muscles, poor sleep, low exercise, etc have taken their toll and I may need some rehab. 

In any case, I'm not done with hope. Keep reading!

Sunday, February 14, 2016

Inquiring Minds

Over the past few days, a number of people have asked how I'm doing and what's happening with the treatment, and I pretty much haven't answered. The truth is that I've been really depressed for the past few weeks. My dog passed on, and while he was a dog, and he lived a full life and he's in a better place and all that, my friend - the one who has been with me every step of the way through the past 17 years- is gone.

I miss him a lot, and I've really sunk into depression. Additionally, unlike before where I was working toward the play, I am really not working toward anything at the moment. A friend and I had decided to go to a concert in order to celebrate reaching certain health-related goalposts, which picked me up a little. The concert was great, and we had a real adventure getting there and back which involved an overheating car, someone lighting a cigarette lighter under the hood of said overheating car, getting towed, driving someone else's car without a rear windshield, and a quiet taxi ride home. My car is fine, thanks for asking :) There was a leaky hose, and it's been fixed.

However, being out overnight seems to have knocked me off course, as I came down with strep and have been out of the pressure chamber for over a week now - so I'm stuck on treatment number 47, and I'm depressed, and I'm still in pain, and I'm not sure if the exhaustion is the strep or the antibiotics or the depression or just regular fibromyalgia.

But I'm not feeling too great at the moment. I can only hope it gets better.

Thursday, January 14, 2016


33 treatments done, 27 to go.

I haven't written lately because I've been tired and life's been hectic.

For the past few days, my thinking has been clearer - the "fibro fog" seems to have lifted quite a bit.
I hope this is the beginning of good things.

Exhaustion has been terrible, and pain is through the roof, I'm taking ibuprofen whenever possible and extra tramadex frequently. But my head is just a little bit clearer.

Saturday, January 2, 2016

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.

Monday, December 28, 2015

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.

Sunday, December 20, 2015

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.