Today is my first day back in LA after a week at my parent's house in Ohio during an intense heatwave. So far this year it's been cool in LA, I haven't had to turn on the A/C once. (I have a window unit in the living room and one in the bedroom.) Right now though I am really wishing I had central air. I am missing that about my parents house. Also their new front load washer and dryer. I don't normally do my own laundry (thanks Jim) but I did a very small load this morning out of necessity. I haven't put the clothes away yet, (because there is nowhere to put them!!) but I did fold them and hang them on the back of a kitchen chair right across from the dryer. The best thing about my parents new dryer is that the clothes come out cool to the touch. I know everyone else loves warm clothes right out of the dryer but I think it's gross. I hate touching hot clothes.
So I am planning my dream house. There would be no stairs. Right now my apartment is on a hill so there's a big flight of stairs just to get to the street. Also, I live on the top half of a duplex, so as soon as you walk in the front door, more stairs. A house with no stairs would be perfect.
My dream house is also right here in this neighborhood, which is lovely, but part of it's charm is it's in the hills, so a lot of houses have this stair problem. Another problem is this neighborhood is an hour's commute away from Jim's new job. So if we moved we'd want to move west, where it's flatter and more crowded and more expensive. Still, for a commute of a half hour, or 20 minutes, I think I might be willing to give up living in this wonderful neighborhood to live in a crummy one. As long as it's relatively safe and quiet. I do spend most days inside anyway, never leaving the apartment. If it meant having him home at 6:15 or 6:30 instead of 7:15 or 7:30, it'd be worth it to me, since I'm pretty much home alone all day while the rest of the world is at work.
So my dream house would obviously have central air, so I wouldn't find myself in the situation I'm in now, sitting in front of a window with a warm breeze, rubbing ice cubes on myself to stay cool. Yes there's the window unit in the other room, which works fine as long as you combine it with the fan, but it's blocked by tons of boxes right now and I can't move them myself. It's been in the back of my mind for weeks, "Make sure you ask Jim to move these boxes into the bedroom, because even though it's been fine so far with just the cross breeze from the windows, one day you'll wake up, it'll be as hot as an oven, and you'll need the A/C"
Even though the window unit keeps me from dying of heat stroke on hot LA days, central air is still really the best, particularly for a sick person like myself who can't even regulate their own body temperature properly, I might as well be cold blooded. It was so nice never having to worry about the weather at my parent's house. And I think having the indoor temperature in the 70s instead of the 80s is just easier on the body, less draining.
I know I am rambling a lot about temperature. But I have to add, even though this is California and it rarely gets below 40 or 30, the dream house has to have central heat. During the day it's not cold, but it does get cold at night and in the mornings. At night it's not such a big deal, there's blankets and sweaters, but the main problem is not having any heat in the morning in the bathroom. It's so cold I have to make the water scalding hot before I can even take a shower, which dries out my skin, and the vicious cycle continues...
Musn't' forget, ideal house would have massive closets. Our closets right now are so tiny. I'd like to get rid of my dresser and just hang everything up except socks, bras, and underwear.
Ideal house would also have no downstairs neighbors or shared walls. And it would have to have a yard. Front or back, I'm not picky, though back would be ideal. Somewhere to sit outside in the mornings and afternoons and watch the birds and the squirrels and feel the sun. I'm usually not well enough to drive to a park, ok, I'm rarely well enough to drive to a park, so a yard is my only real shot from not being cut off from nature completely. Five years ago I wouldn't have thought this was so important, but since I've been home all day, alone all day, day after day, I've really come to appreciate the change of scenery I can get in the back yard.
The dream house would also be an old style Spanish Craftsman house built in the 20s or 30s, but renovated with new plumbing and insulation. I'd like the kitchen cabinets and the bathroom tile not to be ugly but I'll take what I can get. Beautiful tile would be nice though. And of course I'd get one of those new washer dryer sets my parents have. And I also need a more comfortable couch! And a more comfortable desk and desk chair for writing blogs. Right now I'm sitting at a desk chair I found in the garage of my last apartment. Someone was throwing it away, but I thought it was perfectly fine. And it was then, but now I need something a lot better. My back gets so sore so easily. My desk is from IKEA, it's ok I guess. A little wobbly, though I put it together the best I could, back when I could still do stuff like that.
I love the built in shelves a lot of the houses around here have. We have a built in book shelf here which is nice, but it's not pretty or anything, my landlord built it in the 90s as part of the stairs that go to the skylight which opens to the roof I never go on because there's no parapet. And it's hard to climb up there. Also, my landlord thinks he locked me out. Actually he just closed a padlock around a chain that doesn't connect to anything.
Last night I felt like going to a bookstore. We went to Barnes and Noble. Jim was going to buy a book, but they didn't have it in stock, so we left with no books. I saw a book I was interested in (Zoobiquity: What Animals Can Teach Us About Health and the Science of Healing!) But I didn't buy it because I knew I'd be happier reading it on my Kindle. As I put it back on the table I had this eerie vision of my future self, showing some guests into my future home. We enter a room with beautiful wooden bookshelves, but instead of books they're decorated with vases and framed photos and such things. "Where are all your books?" the man asks, clearly assuming we have none. He is an academic type, books are important to him, but he probably doesn't own a kindle, or a television. "On my iPad!" I reply, smugly. Funny, because I don't even have an iPad. But I guess "On my Kindle!" just didn't have the same ring of arrogance.
Though come to think of it, I would want to get an iPad if I switched to DirecTV, like my parents just did. Now they can use their iPad as a remote control, which is just awesome. Remote controls are terrible, so old fashioned. Half time time you push the buttons and the buttons don't work. We need touch screen remote controls. (You can control everything from your iPad but the volume, but I'm sure there's away around this, like having your TV speakers as part of your AirTunes connection...)
While I'm at it, since this is my dream house, it should have a saltwater pool (chlorine free!) and hot tub. Fruit trees: figs, oranges, lemons, pears, grapes, grapefruits, persimmons. And a gardener. A guest room with a bed for guests. Also, a grand piano, and a car elevator.
Next post(s): other things that have been on my mind: "careers" "children" and how much better I slept and woke up when I was on the MAF yogurt
Thursday, June 28, 2012
things conducive to sleeping in the afternoon:
slow blues music
slow hot weather
chronic fatigue syndrome
it was just by crazy random happenstance they all call came together today.
I want to get back to blogging more. I was posting less because I was getting worse and I didn't have the energy to spare. Then I started feeling a little better and I didn't want to be reminded that I had a blog specifically for my bad health.
I think my feeling better was a combination of the MAF 314 (GcMAF yogurt) and starting Cortef. Dr. Cheney prescribed it to me at my visit at the end of February. He said he usually doesn't prescribe it because it usually doesn't work...but it's helping me. Dosage varies but it's been between 15-30 mg a day.
So I am better, but not enough to bump my KPS up or anything. I still couldn't live on my own. I still can't go shop for food and cook myself a meal. But, while anytime last year I would have called myself housebound, it doesn't seem right anymore. I've been leaving the house at least once a week, sometimes two or three times. Sometimes I drive myself. But if I try and drive out of my neighborhood, I crash from the stress of driving, especially if the traffic is bad.
People have been asking about my nagalase, if it went down on GcMAF. It has. It started out at 2.2 and even though I didn't feel any different on the sublingual GcMAF, nagalase went down to 1.3. Then I started the MAF 314 and on January 25 it was at .98. .32-.95 is normal. So Dr. Cheney took me off the MAF 314 because he said people experienced crashes when their nagalse got too low.
I took a nagalase test after I went off the MAF to see where it was and if it would go back up, but the test I took was the wrong one. So they sent me a new test but I won't be able to get the blood drawn for another few weeks, so it will probably be two months before I know the results.
I think I have made a pretty good life for myself, confined to the apartment. A pretty good housebound life. Housebound, even though I get to leave sometimes now. To hang out at friends houses, eat at restaurants, even saw War Horse (the play). Almost didn't make it to War Horse though, I was so tired.
All day in my head I've been saying to myself "I'm so tired" Well it's more like "Oh, Alison, I'm soo tired" I'd say it to someone else but there is no one here to say it to. And I'm not gonna text my mom or my friend just to tell them I'm tired. I wanted to say it on Twitter or Facebook, but instead I just said I was so excited for the premiere of Louie tonight on TV.
I signed up for an online class in music theory. This was the first week and I got all my assignments done. It was the first week so they were pretty easy. Eleven weeks to go. I've always wanted to take music theory. I've also always wanted to go back to school, brick and mortar school. College. But these past few years I've felt I couldn't even take an online class. But with the improvements from the MAF (which I think are wearing off actually now that I'm not taking it anymore) and the Cortef, I thought I could handle it. So far so good.
I am really excited for this slight improvement. But it took me a few weeks to realize how slight it was. But it's something.
Friday, April 6, 2012
Monday, April 2, 2012
One thing about being stricken with a terrible disease at a young age: on those sleepless nights, when you find yourself suddenly plagued with guilt while thinking about those kids you were unconsciously cruel to in childhood, you can at least rest safe in knowing that no matter where they are or what they are doing now, it is almost certain that their lives turned out better than yours.
Wednesday, February 15, 2012
I made this. Click on it for a larger version.
Maybe, like me you've seen a lot of these memes on your Facebook page. First it was directors, then photographers, then wedding photographers, then geologists. Most of them are for professions, but they are branching out. Yesterday I saw one for Mormons. The idea is to show all these different stereotypes held by others, and then in the last frame show how mundane the job really is with a picture of someone doing paperwork or sitting in front of a bunch of monitors.
I don't have a job or a profession. Unfortunately, the closest thing I have is CFS. And CFS was really perfect for this template because everyone has misconceptions of it and it's a major problem.
The final frame is supposed to be the punchline, the funny, mundane reality of the seemingly glamorous profession. I couldn't do that. Maybe there's someone who can, but I couldn't. I couldn't think of anything to put in the "What I actually do" square that would be funny. And I can't try to seriously sum up the reality of CFS with one image. So I left it blank. And then it looked too white and cheery to I made it gray. I'm hoping it at least in conveys some sort of sense what everyone with CFS knows, that what it really does is steal your life away.
I would like to explain my thought process behind some of the other images before I offend my friends, parents, doctors, and society.
The idea that CFS is not a serious disease. That it's the yuppie flu. That it's something only upper class white women get and they make it up so they don't have to work and can spend all day in yoga classes instead. I am thinking specifically of something erv said. Erv is a science blog that I read during the whole XMRV thing to ge a different perspective. The comments section was always a circus and a battleground. Offended PWC's vs. erv and her readers. Someone left a comment trying to make the point that CFS was a serious disease. Here is how erv, a grad student researching HIV, replied, "Those poor, poor CFSers with their yoga classes and homeopathic 'physicians' and computers and internet" (Comment 144)
Sadly, I think this one is pretty accurate. Certain CFS specialists excluded, there are still too many doctors who do not think CFS is a real disease, and that the people who think they have it actually have depression. The fact is, as I wrote in my last post, doctors don't treat me like I have CFS, they treat me like I have depression, which is no help at all. They think it is something I will snap out of in a few years and are surprised year after year when I get worse.
Obviously, the closer someone is as a friend, the better idea they will have of the reality of your disability. But how many of us, when first getting our diagnosis, have told a friend we have Chronic Fatigue Syndrome, and heard them answer "I think I have that too" or "We all get tired"or "You just need some coffee!" etc. Because of the name, people think it just means we have normal fatigue like everyone else.
By now my own parents know that my problem goes beyond not being a morning person. But still, when I was looking for an image to use for parents, this one just resonated with me. It describes my experience in high school when day after day I could not get up for school and my parents, who like me, didn't know what was wrong, tried everything to get me out of bed. That was more than ten years ago. But still, when I go home to visit, this is how I feel I look to them. They want me to do everything on their time schedule. I have felt guilty over and over again because I could not get up early enough at the time they set to go have lunch with grandma. "Come on, get up, don't disappoint grandma!" We are working on talking about it though and we are getting better.
This is actually pretty accurate for me. I am mostly housebound, but not bedbound, so I pretty much spend all my time sitting or lying on the couch. And I am highly dependent on my laptop. For some more severe people it would be a person lying in bed. I said in my last post that I told my doctor, "I do nothing." That's what it feels like. She asked if I went to school or worked or volunteered and I can't do any of these things. And what else is there to do that seems like a real thing besides raising children? So in my dark moments I feel my life is being wasted and there's nothing I can do about it. Which is true, but on the other hand not entirely true. I have my boyfriend and my friends and my family who all make me so happy. And even though I can't write as much as I used to, I can still write a bit, and I can still read most of the time. Little things like that. I have to remember they are meaningful too.
So anyway, there is is. Please feel free to share if you think it's entertaining or useful.
When I was making it I noticed that there is no need for a square called "what my boyfriend thinks" because he lives with me and sees me every day, so he knows better than anyone. I know I could do a better job trying to help the rest of the people in my life understand. But it's something I'm not very good at. Sometimes I want to give everyone the impression that I'm better than I am, mostly people my age, so they'll be more likely to stay friendly if they think I'm young and energetic like them and able to do the things they do, even if I'm not. Sometimes with my friends and family I say I think I can do things I know I can't do because I don't want to disappoint them. And sometimes I am just being self-delusional and really think I can do things I can't do.
It's a complicated situation. But one thing I know is that a lot would change if only this disease had a different name.
Thursday, January 12, 2012
It's been three months since my last post.
Since then I went off the sublingual GcMAF and started MAF 314, which is the GcMAF yogurt.
I took my first dose on Halloween, I don't think I've missed a day. Since then I've felt better, I've felt worse, I've felt better, I've felt worse.
I thought for awhile my skin looked better but now I'm not so sure. I think my tongue looks healthier.
I think my digestion is better. Lately I've even tried eating chicken and fish again. I stopped eating meat regularly then totally a couple years ago because I didn't have enough energy to digest it. Every time I ate meat I'd end up feeling woozy, then quickly falling into a thick, dreamy sleep with my stomach churning, and I'd wake up suddenly two hours later.
I'm hoping if I can eat meat more often I might have a little more energy. I've been eating eggs for protein but I think this will be better.
While I was in Ohio for Christmas, I got called for jury duty in California. This happend a few years ago. I went to my old internist, Dr. M, who's office is just a 5 minute drive. He was happy to write my medical excuse even though I hadn't been to his office in a few years. Unfortunately when I asked him this time he said he didn't feel comfortable writing it since he hasn't seen me since. Which is understandable. But also so backward. I haven't been in to see him because it's not worth the effort. There hasn't been a cure for CFS in the last two years. He can't think I'm all better now?
So I called my "new internist", Dr. G. I switched to her because I felt Dr. M didn't really get CFS. On my first visit Dr. G made me feel like she really got it and I remember thinking she didn't say any of the typical wrong things. But on subsequent visits she did. And now going to her is worse than going to Dr. M, just a slightly longer drive.
Dr. M couldn't see me until next month, but Dr. G's office said it was a $25 charge for jury duty forms and I could come in anytime the next day. I considered driving myself but decided pretty quickly I shouldn't try. I thought about asking someone but before I could think too much Jim offered to drive me during his lunch break.
Jim never made it back to work. It took a long time to see the doctor.
She comes in with my chart. "So how are you doing? Are you back at USC?"
"No, I haven't been for years"
"So what are you doing are you working?"
"So...what are you doing?"
It's not an easy thing to say, that you are doing nothing, but it's the truth. And I am angry, because even though I haven't seen her in a year, she has my chart, she recognized me in the waiting room, she knows I have CFS, but she still doesn't get how bad it is.
It reminds me of a scene Dorothy Wall wrote about. She went to see her doctor for something, a doctor she'd been to before. She was very sick with CFS. It was a huge effort for her to get to the appointment, to make it through the appointment. She tells the doctor about her symptoms and it seems like she is listening. And then when the appointment is over the doctor recommends some play she saw. "You should see it." And she says "Doctor, I have chronic fatigue syndrome, I don't go to plays."
I loved that line when I first read it. You tell her Dorothy! I like to imagine it made this big impact on the doctor. But I think if it had been me to say it the doctor would just roll her eyes behind my back and think "what a dramatic bitch."
Dr. G says "...and you were seeing some 'famous specialist?'"
I almost didn't know what she meant. But I told her yes, I was still seing Dr. Cheney and that lately I had tried GcMAF, and now was trying GcMAF in yogurt form. She didn't ask what GcMAF was, which was a relief.
She asked if I was on any antidepressants and I said no. I remembered she asked this last time. I told her I didn't have any interest in going on antidepressants.
"But you are so young, it's such a shame you...you should be out doing things..."
This is true, I think. It is a shame. It is a major shame. But please, please don't say it like that. It sounds like you are saying it is my fault. Like this is my choice. And I have tried so much. I've tried almost everything. I hate that she says this.
A neurologist specializing in sleep disorders said something similar to me once. First, she said she couldn't do a test on me because I was sleeping too much during the day and not enough at night and they didn't run the sleep clinic during the day. Then she said "Chronic fatigue is a syndrome, it's not a disease." She said something about how it can be corrected by things like changing your sleeping pattern and when she saw I was geting upset she said "You are a young girl. Pretty girl! Smart! Good Height. There is no need for this." Then I cried some more because I came all this way, she had been recommended so highly, and how could she help me if she thought that this fatigue was just some behavior pattern I'd adopted because I had low self esteem? Also I cried because I was sleep deprived and for me it was like the middle of the night.
Today I tried to sum up again for Dr. G how I have already tried six or seven antidepressants over five years and all that time I just got worse. Some of them made me sleep more. Some of them didn't make me sleep more. Some of them made me a little happier when I was awake. But none of them helped with my real problems, that I was tired all the time and needed to sleep 12-17 hours a day. And that I couldn't concentrate anymore. That I couldn't do math or write papers anymore. No antidepressant ever helped with that.
But she still said I should try the new SNRI's like Cymbalta. I said I just didn't see the point of going through that again. I'd never heard anything about Cymbalta helping with post-exertional malaise or anything.
Oddly enough, I looked up Cymbalta in Wikipedia tonight just before I wrote this and it said
"As of January 11, 2007, Eli Lilly is currently enrolling patients for double blind Phase II and Phase III trials of Cymbalta for the use of chronic fatigue syndrome (CFS) in conjunction with the University of Cincinnati. "
Funny coincidence. Maybe if I were living in Ohio I could be a part of that trial. Make myself useful. But then I'd probably have to go off the MAF 314 or something.
I also found out that Effexor, which I started my first year of college, is an SNRI. It got me through my first semester but one week into the second semester and I couldn't get out of bed. Definitely post-exertional malaise, in hindsight. That's when they took me off Effexor and put me on Adderall. "Just to keep me awake"
But my doctors kept telling me I should keep trying antidepressants until I found the right one. So I did. Before I started my first semester at USC I started Lexapro. (I think it was Lexapro) On Lexapro I was sleeping 17 hours a day. I was missing so much school it looked like I was going to have to drop out (and I did) but I was determined to listen to my doctor and stay on this medicine. My best friend, who was also my roommate then, was mad at me. When I told her I was on Lexapro she said she'd been on it too, it did the same thing to her, and I shouldn't waste time on it, I should just get off it. I should have listened to her, but then what would I tell my doctor? He was telling me to stay on it. He said sometimes it has side effects like this at first but they go away.
I think I stayed on it two or three months before I gave up. As soon as I got off it my sleeping went back to normal. (12 hours a day) But it was too late.
I took a few months off and then I went back on Prozac. I'd taken it for for six months when I was eighteen and I thought it was the one that had worked best. In retrospect, the fact that I felt better at this time probably had nothing to do with which drug I was on. I was already out of school and I stopped taking it before I started working. So I had a lot less stress and I could sleep as long as I needed, and I did. Also, I was younger and healthier and hadn't been sick as long.
When I tried Prozac again four years later it didn't do anything. Same when I combined it with Wellbutrin and Adderall and whatever they threw at me.
I haven't tried anymore since then. And I just don't have any interest.
Other things Dr. G said that annoyed me.
"When you go to the specialist, do you see that all the patients are women?"
"Well he only sees one patient a day so I've never seen..."
"Because most of the people with Chronic Fatigue Syndrome are young women your age."
I wish I had said "Why are you telling me this?" But instead I just said that a lot of the patients I see on the message board were men. I wish I hadn't said "message board" because as soon as I said that she cut me off. I didn't even mean message board like, normal internet message boards, I was actually referring to the Yahoo Group just for Cheney patients but I didn't make that clear.
So I never found out where she was going with that.
When trying to talk me into SNRI's she said "You have to run and jump and dance and..." and I cut her off and said "No, actually, exercise makes me worse" and Jim, who was setting next to me all this time, chimed in to agree.
"Well I just said jump and dance to mean you have to try everything."
I wanted to say "But I have tried everything"
Poor doctors, up late at night, pacing around their offices, thinking "What can you prescribe to the patient who's tried everything?"
And for the record I did try jumping, and dancing. They didn't help and probably made me worse.
In the end though she signed the form and I am excused from jury duty for one year. I asked if she could make it longer since there was no reason to expect I'd be better in a year. But she said that was as long as she could make it for unless the patient is over 80.
I wondered if I could find another local doctor before the next year so I wouldn't have to come back. One who understands and won't put me through this. But I think the chances are really, really small.