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?

Day 9 - Acupuncture

This morning, I had acupuncture, and I think that it helped me be more emotionally settled. I'm not sure. I'm not sure I believe in that anyway.

I'm tired, and I'm stressed, and I'm achey.

I really hope this gets better soon.

Days Seven and Eight- Power of Suggestion?

The real dog can't get up on the bed anymore. 

Different doctors posit different theories on what causes fibromyalgia. I've heard it called an autoimmune disease, a hormonal problem, and a metabolic syndrome. 

Newer research tends to say that fibromyalgia is a neurological disorder, marked by actual brain damage to the region of the brain which processes pain. 

The damage, according to the staff at the Sagol Hyperbaric Unit, is generally caused by one of three things; physical trauma to the head, a virus, or emotional trauma.

I haven't had physical trauma to my head, but there was a virus - I had Epstein-Barr (Mono) sometime when I was 18 or 19, and there was emotional trauma. 

I was warned when I started the treatment that part of the process is that emotional traumas have a way of coming to the fore in one's mind.

So maybe it's the power of suggestion or maybe it's the fact that that's really how this works, but yesterday (Monday - day 7) I was in the chamber listening to music (there's a "radio" kind of like on an airplane where there are 3 channels that you can choose from) and all of a sudden, I was in a flood of memories - good, bad, ugly - anything from playing with a smaller child in daycare when I was four or five to giving birth to my children to being kissed - just everything was rushing in. It wasn't even things that were necessarily highly emotionally charged, just there was so much of it. I was overwhelmed, and I started crying. 

I don't know if anyone noticed and chose to not say anything or if people are so involved in their own stories that no one noticed, but there I was, in a room full of people, crying, tears running down my face, and feeling completely alone.

And then, the treatment's over, I have to get my stuff, get in the car, keep up normal conversation with my passenger, pick up kids, get through the day. Get through the night.

I feel so raw, like I have the emotional strength of a small child, like I could break at any moment. But here I am, being a mom, being a wife, being a writer, 

And sleeping with a stuffed toy dog. 

One Tenth!

Yep. That's how I look when I'm hooked up to oxygen!

Today was treatment number six.
I tried to sleep, but couldn't - I think it's mainly because the oxygen is behind a valve, and the effort needed to breathe is more than I can put out while asleep.

Apparently, the fact that it wears me out is totally normal, and the fact that I'm in a lot of pain is also totally normal.

I talked to another fibro patient today who is at around 50 treatments and I got some feedback that I found useful if not as encouraging as I'd hoped. She says that she still gets run down very quickly, but is slowly building up her strength.

So I was thinking that it's kind of like a trip, and there's crew and passengers and stuff. So it's a manned mission because there's a nurse inside, but the main operator is outside. The guy who usually does it is called Barry. He has a bunch of video screens in front of him and he's supposed to watch everyone for signs of oxygen poisoning, as well as tell us when our breaks are and handle the airlocks.

I realized today that there are two airlocks. I'm not sure that's what they're really called, but there's this little tiny chamber where they can pass through small items if someone needs something, and there's also a bigger chamber which can seat a few people. That chamber can be sealed, brought up to 1 atmosphere (like the chamber I sit in), and then people can go into it and decompress so that they can use the restroom.

Pro-tip - if you bring gum in in a container that closes, don't close it during pressurization or depressurization. The former causes the sides to cave in - the latter causes the top to pop off, loudly.

Water is served from plastic pitchers which do not seal. Apparently, this is why.

6 down, 54 to go.

First Weekend - Pharmacy Edition.

My kitchen pretty much looks like this

It's been an interesting few days, health-wise.
I had a brutal time falling asleep Thursday night, but eventually with two Optalgin, plus an extra dose of Tramadex 50mg (I already take 200 OD - which is slow release and lasts 24 hours) I was able to sleep at 5am. That was, needless to say, far from ideal.

Friday night, I tried that with a little bit of melatonin, and I slept really well. I woke up Saturday morning, went to synagogue, and came home feeling like I'd been lifting heavy boxes for hours. I slept another 5 hours, then woke up and went to lie on the couch and hang out with the family.

Now I've been up about 5 hours, and I'm almost tired enough to go to sleep again. I think I'll take a melatonin tonight, too, just to keep everything on schedule. The last thing I want is to be up until 2am tonight and then to feel even worse tomorrow.

Basically, I feel like I'm ingesting a small pharmacy daily, but this should be temporary. Hopefully, in a few more weeks, I'll start feeling better instead of worse... In the meantime, I'm grateful for a husband who took care of the kids all afternoon, parents who love me, friends who are amazingly supportive, and a doctor who didn't make me come into the office to ask for extra pain medicine.

Photo by Ryan Lackey

Day Five

This is one of the four multi-person chambers

We all live in a yellow submarine... Ok. It's really white. So I'm getting more used to the rhythm of things. I wake up, get everyone dressed and ready, and head off to the hospital. I get my stickers, they take my temperature and blood pressure. I put my purse in a locker, go to the bathroom-it turns out that you *can* escape in the middle, but it means an extra drop and rise in pressure, which is not exactly fun. Then a drink, and then into the chamber. 

I have a  passenger who I take home, and then it's time to get the baby... It's there that everything fails, and I am so tired and in so much pain that it just isn't workable. Unfortunately, children arrive, need lunch, need a mommy... Maybe we'll get there next week.

Day 4

There's still a lot I want to say - day 4, I was so exhausted that I went to sleep before the kids - I think I got into bed around 7:15 and I barely moved again until Ephraim came in at 5:30, and then I only actually woke up for my 6:15 alarm - and I'm still tired...

So I'm off to the chamber soon. 

Day #3 - Check In

I am more sore than I can remember being in quite a while. This apparently means that the treatment is working.

I would like to sleep for about a week, but alas, I have to do various mommy duties, and then I have to go to a play rehearsal (play in three weeks so I can't miss rehearsals no matter what)

I'm supposed to get an acupuncture treatment at some point, but I really don't have time for it. Being a mom is hard. Being a sick mom is harder.

Anyway, I'm not sure I'll have time to write more tonight, so I'm just checking in and confirming that I went for treatment #3 today.

Impressions and Answers

Taken from the Rice University article because taking a
phone/camera into the room is a big no-no

So my second day was ok, though the treatment somehow felt longer.

Here were some impressions of my first day that I jotted down while I was being pressurized and oxygenated:

1. I had brought too much stuff. There's not really anywhere to put your stuff, so less stuff is better.
2. There's a nice camaraderie in the chamber, and day 1, they didn't really seem to want me to be a part of it. Today was a little better.
3. The pressurization process is unpleasant and seems to take forever (around 8 minutes). You have to keep equalizing your ears every 5-6 seconds.  At this time, they hand out water and tissues.
   It goes up by one atmosphere over those 8 minutes. Coming "down" (which is actually the equivalent of going up in an airplane.) is easier and takes slightly less time. Veterans seem to be able to equalize much faster than I can.
4. The chairs are well-padded, but brutally uncomfortable after about 2 minutes. They're somehow shaped in such a way that you just can't get comfortable no matter how much you shift around, even if you have a sheet behind you and a foot rest. Not really sure what's wrong with them, but I couldn't sit still for more than a few minutes at a time without feeling pain.
5. There are earphones and you can listen to three radio stations, except it didn't work for me today.
6. The chamber is roughly shaped like the inside of a bus, with seats along the sides facing the middle. It seats 14, one of whom is a nurse who is their inside man - there's also a hall monitor who sits outside and watches us through a camera lens
7. If you want to leave or join during the treatment, there is a pass-through which can be pressurized separately - it's kind of like an airlock. 
8. Each person has a mask on them - you get your own mask and use it every day - There's a white tube on the left, and a blue tube on the right. Tubes are also your own. Presumably, one is for incoming oxygen (100%) and the other is for whatever you exhale. 
9. Masks are on for 20 minutes, off for 5 (roughly). During the five, people get up and stretch and walk around. 
10. People sleep or read - you can't do much else. 
11. I miss my phone - I think about it every 5-10 minutes while I'm in there. 

People have asked a number of questions. Here are some answers:

Treatment is 12 weeks, 5 days a week, 2 hours a day.

I am not part of a clinical trial, and there is no particular approval for it, so it has to be paid privately. Although they may look at my data in terms of their own internal understanding of what's going on, they cannot use my data for any research purposes (which is, imo, too bad.)

They expect me to get worse initially, and then (if we're really lucky) get better.

The first night after, I was in a lot of pain, and I woke up in the morning feeling like I'd been through a serious beating. I was tired all day... 

Ok - it's almost midnight, and I'm exhausted. And tomorrow, we do it all again.

One more thing - I want to thank my 2nd cousin Karl Taro Greenfeld, because he's been in there with me telling me stories this week. I highly recommend Triburbia: A Novel. It's been a really engaging read! 

Getting Started - Hyperbaric Hope

Hi, I'm Leah, and I've had fibromyalgia for 14 years. I'm 37 now, married, and I have three kids, aged 8, 6, and 1.5. They're great, and they deserve a mom who can function. So does my husband.

When I met my husband, I was working a full-time job in an office, and it was taking a heavy toll on me. I had migraines, and I got sick often. When we got married in 2006, I quit my job, and since then, I've worked part-time from home. At my best, I worked 20 hours a week. Recently, I had to give up a job where I was expected to work something like 2 hours a week. My health stinks.

I'm going through this very quickly, and I'll explain more about Fibromyalgia and Hyperbaric Therapy as I go on, but right now, I want to tell you about starting the therapy.

A few months ago, I found this article about Hyperbaric Chamber Therapy, and followed the breadcrumbs until I was able to make contact with the Segol Center for Hyperbaric Treatment, which is where the initial article's study ran.

I met with the staff there, including the author of the article, Dr. Shai Efrati, and began the paperwork to start treatment. They requested a number of blood tests, a chest x-ray, and an MRI. I did the MRI a few weeks ago, and today, I started treatment.

There are a lot of rules:
1. No electronics. not even a hearing aid - I think pacemakers are ok, because the spark couldn't get out of the body, but I didn't ask.
2. Everything you wear has to be at least 80% cotton (though they didn't ask about my underwear) - no wool, no synthetics.
3, Only human hair wigs are ok.
4. No contact lenses.
5. No food, but gum is ok, even recommended. They give you water.
6. No toilet - better go before.
7. You have to cover your shoes with cotton thingies.
8. They take your blood pressure and temperature every day before treatment.
There are a bunch more, but those are the basics.

Oh, and here's the part you might not know - you do it 2 hours a day, 5 days a week, for 3 months.
It's like having a job.

And instead of paying you for it, they expect you to pay - quite a lot. I don't want to write the specific numbers here, because things change, and I'm not going to come back to this page and change it every time. It's not cheap, and as of now, in 2015, no insurance pays for it. At all. On the other hand, if I can get back to working half-time, I'll be able to make back more than that long before the first year is up - so it's all relative.