Family

His post from yesterday… Nice Birthday so far… The pain is out of control today… I started waking up around 5 am for short periods as the waves of pain reached a level I couldn’t sleep through (1-2) I would then pass out and go back to the nightmares I was having. During one of these short periods of being awake I made note that the pain seemed to be switching sides although I don’t know if I was cognitive enough to judge if it was a “wrong side cluster” or migraine-like in nature. When I got up I had a throbbing pain in the cluster area that was well into the 1-2 level. I tried to relax and ride it out but around 9:15 it started to ramp up and became a full on attack that had rapid waves of 6-7 and a baseline of about a 5. This is a bit unusual, most of my clusters don’t seem to “throb” as bad as this one did. So here is the real sucky part… when it “broke” it never fully went away, it only dropped to around a 2 with waves approaching 3 for like the last 2 hours. I am hoping for some relief soon… 4:45pmThe level 1-2 cluster pain has been pretty much constant since the last time I posted. Now on top of that I feel like I have a pretty intense “migraine” layered with it, it I feel it mostly on the cluster side but its more spread out and often throbs on the other side as well. Light sensitivity, feeling queasy, wanting to lie down and rest…all the things associated with migraines… along with the pin point cluster pain that makes you want to move and such. its very tiring. 2:05amThe pain continued the […]

After Doc’s visit to the emergency room three weeks ago, his migraine has gradually been getting less intense, one little baby step at a time. Actually it’s been more like 3 steps forward, one step back. Monday night he still had his buddy Mr. Migraine hanging out with him, and then their asshole next door neighbor Mr. Cluster came by for a drop-in visit, and surely overstayed his welcome, partying all night with Mr. Migraine and refusing to go home. Tuesday afternoon, Doc went to see a neurologist, Dr. Maureen Watts of the Dallas Headache Association. She works in the same clinic as Dr. Stuart Black, who is supposed to be one of the world’s leading specialists in headaches. He couldn’t get in to see Dr. Black, of course, as he seems to be booked up through the summer of 2008. From what Doc told me about his visit, Dr. Watts seemed to actually take an interest in helping him feel better long-term, rather than acting dismissive and throwing drugs at him. He’s had so many bad experiences with doctors who don’t seem interested in getting to the bottom of what is causing his many and varied problems, and who don’t seem to want to deal with him because he’s not an “easy” patient. Doc wrote up several pages of history, detailing his health issues, that he gave to Dr. Watts. She read it while he sat there, and then asked him specific questions about things in his report. (I think that doctors love it when you come to them with a well-thought-out detailed list like that.) She said that from what he described, he definitely has both cluster headaches and migraine headaches (which is rare, but it can happen), and although she’s not a sleep specialist, probably some form […]

Everyone has been so nice to me for the past few days (not that you aren’t usually 🙂 I really appreciate it. I realize that this is going to sound completely cheeseball, but it means so much to me that you guys have been so concerned about Doc (and me) and have been so quick to help us out in so many ways. I know that’s what friends do: we get each other through the tough times, providing an ear, a shoulder and a kleenex when we can’t figure out how to cope with the shit that life has thrown at us. And sometimes, when we haven’t seen each other in way too long, we pick up like it was only yesterday. I just hope that I can return the favor someday. I’ve felt rather wiped out, mentally and physically… I guess it was a cumulative effect, culminating on Wednesday with the emergency room visit and all. I’m definitely feeling better now than I was last week. Stopping my Project 365 was a surprisingly huge relief, and once I beat it into my own thick head that it was OK to just go out to eat if I don’t feel like cooking, I suddenly felt like cooking again. Go figure. My boss let me take the day off on Thursday, Kathryn came over that evening to hang out, and Brett showed up with a cubic meter of Italian food. I saw Debbie and Rachel, neither of whom I’ve seen in ages, on Saturday at Ginger’s wedding shower, then on Saturday night Brittney, Yvonne and Nate came over for margaritas and dinner. I had a great time playing with Zoe, and she smiled and laughed a lot (Yvonne said it was real smiling, not just gas 🙂 Enough about me. Doc […]

Too exhausted to write much, but the CAT scan came back clear. No tumors. Hydrocodone definitely dulls his pain but he’s totally stoned at the same time, so it’s not much of a solution. Good news is, going to the ER got him some sort of emergency referral to Dr. Black, the headache neurologist who’s “booked up” until 2008. Going to call him tomorrow and see when he can see Doc. Had good experiences at the hospital. Doc felt like this time (his 4th time in the ER for headaches, the other 3 were before I met him) people were taking him seriously and not just saying “you have a headache, take some tylenol” and sending him home. Doctors seemed concerned, wanted CAT scan done. Several different people asked him who his neurologist was and seemed surprised that he didn’t have one, so rather than a “do you want to see a neurologist about your problem?” attitude, it was more like “um, sir, someone in your condition NEEDS to be seeing a neurologist.” That was definitely a positive experience for him. The nurse who gave Doc the pain shot and who checked us out at the end was so nice and so concerned about him, she seemed very sincere and caring. I didn’t get her name. When we initially got to the hospital and had to park a few blocks from the ER in the only parking we could find, a hospital worker pulled alongside us in his truck and offered us a ride up to the ER, which we took. VERY good hospital experiences this time. Of course, we haven’t yet gotten the bill.

At E.R. Getting CAT scan. More later.

Tonight it got to me a little. I was doing okay today, mostly, until just now. I went to work, talked to Doc a couple times about the headache stuff (and he’s having a really bad day, which is emotionally stressful for us both), we went to see our new financial guy who is going to make it so we don’t have to expend frustrated brain power on our investment strategies, and then I promised Doc I’d cook spaghetti tonight when we got home. After fighting traffic across town at 5, we talked on the phone to Dr. Aronoff’s nurse, who told us that the options were to take a different painkiller or, if it was worrying Doc, to go to the ER. Can someone please tell me exactly how WE are supposed to know if we should be worried? Isn’t that what the doctor is supposed to use his years of medical training to determine?! I think an eleven day long headache is pretty fucking worrisome, but for a doctor to tell us to go to the ER to get a brain scan if WE think it’s something to worry about… I just don’t understand that reasoning. Anyway, that was extremely frustrating, and then I had a conference call with Arushi and the book author about the book cover designs (which went well, by the way), and after spending another hour searching fruitlessly for the perfect stock photography image that the client wants for the book cover, I realized that I was just Completely. Out. Of. Energy. And when I told Doc that I didn’t think I could follow through on my promise to make spaghetti for dinner, I broke down and started crying. And then Arushi read my previous blog post and called to check on me, and […]