Monday, November 30, 2015

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! 

Sunday, November 29, 2015

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.