For the next two weeks of the I-Match Program, Dad and I will be staying with his friend Shya Chitaley. When we arrived last night she spent the next two hours trying to force various forms of nourishment down my unwilling throat. Every time I said “no thanks, not hungry” she would offer something else.
I am writing this in the lobby of the Walker Building at the Cleveland Clinic, having just finished today’s I-Match stuff. It was exceptionally dull. I’m waiting for Dad to pick me up, and not sure when he’ll be here. He has a godawful cough, and has had it for quite a long time. Since he won’t be able to see the doctor back home till I get out of I-Match, he is supposed to see an urgent care doctor here at the Cleveland Clinic today. Not sure when he’ll return. Yesterday, unbeknownst to each other, he was upstairs in this building and I was downstairs, and I heard him cough and recognized it and ran up to look for him. That’s how bad it’s gotten.
One of the two others in my group has, I believe, quit the program. She had to be hospitalized on the second day when, during infusion, she forgot who, where and when she was. She has not returned and I think she will not. I am not surprised by this development, as she is a very frail woman with a long history of nasty drug reactions. It is most unfortunate, of course, that she couldn’t complete this because she was suffering horribly.
The other woman is still here, though. She finished her infusions TWO HOURS before I did. It was bloody unfair. I didn’t get done till 2:30 and by the time I had gotten disconnected and disentangled and what have you, the cafeteria had closed and I had to run off to exercise and physical therapy without any lunch. I also couldn’t tolerate the solumedrol today. One of the side effects is a bad taste in your mouth. I could put up with that on Tuesday, Wednesday and Thursday, but for some reason my body revolted today and I started gagging and begging the nurse for pop, water, crackers, anything to get the taste out. She disconnected the solumedrol and gave me what I asked for, but it seemed like a long time before the taste went away.
Next week Dad and I are moving in with an old colleague of his who invited us to share her condo for free. The colleague is “old” in the sense of “she and Dad go back thirty years” and also in the sense of “she turns 96 in two weeks.” She retired from her position at the Cleveland Museum of Natural History less than a year ago, but still visits once a week. She lives on her own and looks and acts like a woman of sixty, Dad says, but I haven’t met her yet. Honestly I’d rather stay in the B&B, because it has wireless internet and this lady’s condo does not, but $75 a night versus $0 a night for lodging is hard to turn down. Dad thinks I will get on with his friend very well. She doesn’t have any relatives in the area: her husband died a decade ago, and I think she only has two children, one of whom is dead and one of whom lives in Massachusetts. She was born in India and spent most of her life there.
Anyway, today I go home and try to survive the weekend using some of the strategies I’ve learned thus far. The real strategy-learning begins next week. And no more infusions, thank goodness.
So, yesterday we got orientated. There are two other people, both much older women, in my week besides me. Later we will meet with the people ahead of us. I already met one casually in the lobby, who came all the way from ALASKA to go through this. I told her about my friend who lives in a yurt in Alaska and gave birth to her first child there, miles from civilization, with only her mom in attendance.
We each saw the doctor both yesterday and today. She wanted to mess with my crazymeds (there are certain anti-depressants that reduce chronic pain but I’m not taking any of those at present) and I was like HELL no. It took years to get me on the cocktail I’m on now, which has (headache aside) made me feel better than I have in perhaps forever. I don’t want to screw that up. She said she understood, and just prescribed a beta blocker. Today she brought up the subject again and persuaded me to let her make one small change: extended-release Depakote, which I need to take only once a day, as opposed to regular Depakote which I have to take three times a day. She assured me that there is no other difference.
The first day I saw a physical therapist, and today started an exercise regimen. And also got infused for several hours. One of the drugs left a horrible taste in my mouth but otherwise it was all right. I had my laptop with me and surfed the net, so I was not bored.
Today in the group headache education meeting thingy I talked about my frustration and annoyance at my utterly ridiculous diagnosis. The psychologist in charge of the group said no one knows anything about New Daily Persistent Headache. He has a 1400-page textbook dedicated exclusively to headaches, and all of 1.5 pages are devoted to NDPH. There’s not much of an incentive to study it: it doesn’t kill you, it’s very rare, and because it’s pretty much a diagnosis of exclusion, screening for the study would take forever and cost untold millions.
He did share an interesting tidbit of information, however: although no one knows or can prove pretty much anything, the prevailing theory is that NDPH is caused by a viral infection. The majority of sufferers report that, shortly before their headache began, they got a virus and had a fever or whatever for a few days. Then they get better, and then the headache starts. The idea is that the virus causes damage to the nerves that cause headache, and even after the immune system kicks out the virus, the nerve damage remains. Of course, it’s got to be more than that, because (A) Not every NDPH sufferer says they had a virus beforehand and (B) Why does it only happen to a very few people and not others? But the correlation is very strong and they believe they’re on to something.
That theory applies to me just about perfectly: on September 17, 2010, I caught stomach flu from my boyfriend. I puked and was generally miserable for a few days, then recovered and went on with life. Then on October 13, I woke up with a terrific headache…
The $64,000 question, then: why, if Michael and I got the same virus, am I the only one with NDPH? Well, most NDPH sufferers have a history of other kinds of headaches — in my case, migraines afflicted me as a child, and have cursed every female on my mom’s side of the family for at least three generations. That might have something to do with it as well. Michael has no such history in himself or his family.
Of course, this is still just supposition and correlation and so on, not proof. It’s just a theory that happens to make a lot of sense. It certainly doesn’t help me any, even if I were to know for sure that this is what caused this to happen.
I talked about how, last year around this time, when I was desperately looking for answers, how devastated I was when my MRI came out clean. When I got the results I broke down and cried, because I had been so hoping it would show something that would explain what I was going through. I would have almost been relieved to find out I had a brain tumor. (I was quite sure, even before the MRI, that I didn’t, since I had no neurological symptoms besides pain.) I just wanted to have something you could see, something I could point to on the scan and say “Here, there’s the headache, right there.” Instead this is an invisible and elusive enemy I’m fighting. The other women in my group (who don’t have NDPH, incidentally, but other kinds of chronic headache) expressed similar sentiments.
I think the program, so far for me, is doing what it is designed to do. They outright said they could not cure me and could not promise any pain relief at all. But I am being educated and enlightened and learning coping skills and all that stuff.
Fun anecdote: when they asked me this morning how bad the pain was, I said it hurt pretty bad and felt like something was pulling on my hair. A short time later I had a sudden thought and realized that something was pulling on my hair: my headband was too small, too tight for me. I pulled it off and immediately felt much better.
I have arrived in Cleveland and am safely ensconced in the B&B. It appears lovely and the innkeeper was very nice, as they are pretty much required to be. I get up at seven and must be at the Cleveland Clinic by eight.
Crikey, I’m tired. And, needless to say, my head hurts. No remedy for that but to go to bed.
Due to a series of miracles, I start the I-Match program on MONDAY.
Anyone who’s in psychotic online stalker mode can just go to the Cleveland Clinic’s headache center Monday through Friday, 8 to 5 for the next three weeks. I’ll be there.
For what seems like the first time in ages, free time and good energy and (relative) Headache relief coincided enough for me to be able to spend the last several hours contentedly writing Charley Project updates, twelve of them.
I am particularly pleased with the Amber Hoopes one. I had some stuff on her from NamUs and then realized I had never altered her casefile in the whole seven years the Charley Project has existed, so I Googled her name to see if I could find anything. I found things in abundance, in particular a website her grandparents made about her disappearance. The Hoopes updates lead to my updating Stephanie Crane‘s casefile too; since those two cases share a suspect, they also shared a lot of the same details for the “circumstances of disappearance” section.
If only nights like this could still happen at the rate that they used to. But! I have an appointment to see a neurologist in Cleveland on Tuesday and it looks like the ever-elusive I-Match Program will at last come within my grasp. I think this appointment is the final, or close to the final, hoop that I have to jump through before I get my name on the waiting list. And then it’s just a matter of, well, waiting.
Because the Headache has for the past fifteen months been such a powerful malevolent force in my life. It makes me feel nostalgic for the days when all I had to worry about was severe depression and resulting suicidality, or horrific bullying at school, or academic problems, or all the backstabbing petty fighting in my family, or all of these at the same time… all of these seem to pale in comparison to this entirely different kind of misery. I must needs get into I-Match because it is the greatest weapon that I know of to fight the Headache. One of us has got to go.
Always on the lookout for pain remedies (because it’s all gone wrong again, headache-wise), I purchased half a pound of kava, a South Pacific root that you mix with water and drink out of a coconut shell. I bought a coconut shell, too, figuring I might as well do it in the traditional manner. I had it sent to Mom’s house. The package arrived yesterday and I opened up the bag and followed all the instructions, then drank two shells’ worth.
It didn’t taste as bad as I had expect, but I didn’t feel a wee bit different, even though kava is supposed to be really relaxing and helps with pain and all that. My head didn’t hurt any less and I certainly didn’t feel relaxed. Either it’s another stupid overrated herbal remedy or I should have ordered some from Vanuatu which apparently grows the best kind; my kava came from Fiji. (I refer you to Maarten Troost’s writings on his own experiences with kava. Especially pages 60 – 62.)
Anyway, I went upstairs to take a nap, leaving half a liter of kava by the sink. While I was sleeping, Mom came home and saw my car in the driveway and what appeared to be a pitcher of dirty, stinking water on the kitchen counter. She promptly threw it down the drain, wondering what in the world I’d been doing.
Did I mention that my kava cost like $70, and I’d used up perhaps a quarter of it making the first batch? And she threw half of it away. So, way to go, Mom, you just threw away $8.75. I could, like, go to the movies with that, if I didn’t buy popcorn.
Actually, I couldn’t get angry with her because she didn’t know what I was up to and I had to admit that kava does look and smell (and taste) like dirty water. I ought to have put up a note or something.
I spent all night working on more May cases. It usually doesn’t take this long, but again, with the cases being so recent many of them had lots of articles. Twenty down, six left to go. Then I will resume my normal updates (that is, adding cases more or less randomly), perhaps with a focus on this past April, which doesn’t have much on Charley yet. Of course, I’m hardly lacking for cases to pick from. I haven’t counted but (mostly due to NamUs’s flowering) I believe I have a few hundred waiting patiently in line to get written up and posted.
Much as this backup annoys me, I try very hard not to freak out and beat myself up over it. I think I do a reasonably good job at that by now.
I’m glad to be getting back into the swing of things now that my headache problem is improving. It’s not gone, mind you. It’s just that I’m no longer in excruciating pain every day, or even every week. The night before last I was in some pretty severe pain, though. I went digging through my library bag looking for some book that might be sufficiently interesting to distract me, and instead I found a bottle of Dilaudid I’d forgotten I had. For me it was rather like finding a $20 bill in the pocket of a coat you hadn’t worn for awhile. I put the medicine to good use, trust me.
HIM: So, have you ever tried illegal drugs?
ME: For my headaches? No.
HIM: Well, I mean, medical marijuana…
ME: I smoked pot a few times when I was, like, sixteen.
HIM: I mean, it’s illegal here, so obviously, as a medical professional, I could not suggest that you try it. But, well, they do have it in California, and they say it works very well for headache pain.
HIM: I’m not advising you do commit any illegal acts. I’m just saying, some people have gotten relief from it.
(Warning: graphic pictures below.)
I kind of had a bad reaction to headache pills yesterday and got into an extremely intoxicated state where my mind worked fine but my body didn’t. I couldn’t walk four feet without falling. I probably should have sought medical attention right then and there, but I was alone and in no fit state to drive, and it didn’t occur to me that it might be a “911” type situation. (It was.) By means of clinging to the rail and sliding down the steps on my butt, I managed to get downstairs without killing myself and then tried to get a glass of orange juice, but broke the glass and cut myself on the hand in the worst possible place: on the webbing, between the thumb and forefinger. This was the result:
While still lacking any coordination at all, I tried to clean things up. I couldn’t find any paper towels (thanks Mom, for going away on vacation for ten days and not telling your house-sitter where the paper towels were) and tried to use toilet paper, without much success. The result being that I bled all over the kitchen and all over myself. These, for example, are my pajama pants:
I finally gave up and went back to bed. Later, the guy doing remodeling on Mom’s house came over, and woke me to ask why the kitchen looked like a crime scene. I told him and he bound up my hand with gauze and tape from his first-aid kit, doing a fine job. I went back to bed again and slept for a day or more.
I woke up in the afternoon the next day (today), feeling rather better, and decided to take a shower, which meant unwrapping the bandage. That’s when I realized just how bad the cut was. I drove to the urgent care clinic but they refused to assist me. They got the idea that I had tried to commit suicide and forced me to go to the hospital emergency room, where I went through loads of unnecessary medical procedures and also a suicide assessment because they too wouldn’t believe this had all been an accident or series of accidents.
Four hours after I arrived in ER, someone finally cleaned and sutured my hand, but because of where the cut is they couldn’t do much for it. This is the result:
Not a great improvement, as you can see. It hurts like a bee-yotch. Thank goodness it was my left hand, not my right one, and they did prescribe antibiotics, but I wonder if my hand will ever be the same again. I can’t even hold my stupid purse with that hand now.
And I still have to clean up the kitchen.