Wednesday, June 3, 2015


Crazy...I'm slowly going crazy. I've been seeing a therapist now for a few months and it's actually helping, but there are times like this week where I feel like taking a long walk off a short pier. It's just a crazy, nutso time.

I was in San Diego this weekend and it was heaven. I ran the San Diego Rock and Roll Marathon. It was a challenge, but it was a good challenge. It was a challenge for my feet because I have a touch of plantar fasciitis in my left foot, but I finished with a super strong last mile. I passed 26 people, in fact, in my last mile. I was slow...over six hours. Part of it was because I'm slow and undertrained, but over 20 minutes was due to stopping to help some poor guy who was suffering from horrible cramps. I saw him go down and went over to help. I had some Biofreeze so I had him sit and rubbed his leg until the cramp subsided, and talked to him about his fuel. He'd not been fueling correctly (obviously). I told him he needed salt and he'd be able to finish and explained what was happening. That kind of thing makes me feel so good. Fortunately First Aid came along. We had him take two salt packets and he felt like a new man. I walked with him for awhile and Rose found me. I told him to grab two more packets at the next station and that he really needed fuel not just Gatorade. (I gave him a gel but he almost threw up...they are an acquired taste.) I hope he was able to finish and it was worth it to have a slow finish.

Anyhow, just those two days felt so good. My headache was light. Stress was light. Roy and I were together and having fun. I am young and felt young and then we got home. It was raining here and my headache came back. I felt ten years older. I went to work the next day with a pounding headache and felt so exhausted all day. I hate it. I'm Just So Tired of it! Pain just sucks the life out of me! I have, I hope, at least another 40 years to live and the idea of living it feeling like this all the time is so bleak.

I used to be such an up person and I just want that person back. I want to feel like I have all the time in the world ahead of me to try and do new things. I want to set new goals and feel assured I will reach them. I HATE THIS BODY SO MUCH!

Monday, January 26, 2015

I am coming up on my three year brainaverysary this week and there are days, like today, where I wish I had just died. I don't know if I really mean that or not but I'm so tired of the pain. I'm sitting here at lunch in my office and there are photos of Roy and I at Comicon and part of my brain is saying "You have a wonderful life!" and I know, cognitively at this moment, that this is true. I have so many blessings. I have a wonderful, supportive husband. I have a job that I love that I know makes a difference. One of my former students told me yesterday on Facebook that he will always hold me in his heart. We do cool things as a couple and are both on the same page. I have friends who care about me, and me about them.

It's just that this pain is so weary-ing. It just wares me down. I have had only two "good" days since November and sometimes the good days almost make it worse, if that makes sense. Yesterday, for example, was a good day. I got up early and my headache was minimal. I'd say it was about a level 3--annoying but easy to ignore. It was "there". My friend, Jacquie, and I were running a 20 mile run from Marysville to Mill Creek. I was so glad I did not have to cancel because I coached Saturday but had a bad head the entire time and spent the remainder of Saturday, after coaching, laying in a chair or in bed. So I was super happy.

On the run once I got into it about an hour in, my headache was gone. This happens when the dopamine and endorphins start doing their happy "You're getting some exercise" dance. It doesn't happen every time, and if the head is really bad, it doesn't happen and sometimes I'll do a long run anyhow because I need to for training, and be miserable the entire time. But yesterday the sun was out, it was unseasonably warm at 60 degrees. I was running with a good friend. Another good friend, Tom, provided a water stop. We picked up another up and coming friend, Tamara, to run the last four miles with us. We finished at Mill Creek Town Center and then went to Azul for lunch and of course, bought Frost Donuts to take home. My headache returned to about a level 4 later in the evening, but I still consider it an amazing day.

Then this morning I get up and right away it's on. As I was getting ready I made sure to stretch so I knew it wasn't my neck causing a secondary headache. I was in good spirits, so it wasn't like I was being grumpy or "Oh it's Monday so I have a headache" hypochondriacal. In fact it was about a 5 and I don't stay home at a 5 ever. That's sort of my base headache.

As soon as I got out and towards work, though, there is this line that when I drive past it there must be some weather zone that I hit that hits me back. It's very strange because I can even be sleeping and drive past that (well, Roy drives past that, I try not to sleep drive often) and I'll wake up with my head hurting more. Bam, head went up to a level 7. Nausea set in, immediately my eyesight blurred and I could feel my lips tingling and starting to go numb, my tinnitus getting worse, and my ears starting to burn. The thought went through my head at that moment "Maybe it would have been better if I had died." I had to fight back tears because I just felt and feel so fucking defeated.

I know it wouldn't have been. I know there is a reason I made it, but why did I have to be saddled with this ongoing headache? I don't think anyone understands it who doesn't live with this 24/7 pain. I don't think it's getting better. I think it's getting worse. I just want it to end.

Tuesday, January 6, 2015

Happy 2015!!!

Another year!! Yay! I am coming up on my third anniversary of my brain hemorrhage and I feel like I'm still learning SO much about the brain, about traumatic brain injury, about my relationship with my brain (let's just say "it's complicated"), and about my recovery.

First of all the good things. I am back to full bore running most days a week, which is awesome. I ran three marathons over Christmas Break. I did have six planned, however I tweaked my knee in the double over the 27th and 28th and decided it would make sense to not injure myself MORE so I bailed on the last three. Not that I didn't run. I did run 14 with a friend instead of 26 one of the days. I also ran at least 5 or 6 the other two days. I have the WDW Dopey Challenge coming up this weekend and I wanted to not be benched for it.

I am truly thankful for the running because it is what makes me, me! Sometimes I don't feel like going out; my head hurts just enough to make me want to curl up with one of six dogs (or two of six or even all six) but I make myself go out anyhow and I'm always glad. There are still way too many days when I just can't go and I don't like that, but at least there are more on days than off.

I think I'm maintaining my intelligence, which is also a good thing. Except on really REALLY bad days I seem to be capable of rational thought and critical thinking, even at the same time. Sure, on bad days I drool into my cereal bowl and grunt like Neanderthal Man after a bender, but those days are only once or twice a month.

My strength is back to where I was before and now I'm going to get even strongerer! Huzzah! I haven't missed teaching a bootcamp class in awhile (although we're on hiatus right now). I find that most of the time I can get out and get relief, even when the head is bad going in. That has helped me to firm up, and feel better about myself.

Unfortunately it's not all good news. I don't think I've seen any improvement this last year at all. I'm beginning to worry that this is it. This is life. I get to carry around a humming head full of pain forever. My tinnitus has grown worse, although I find that if I ignore it it doesn't bother me that much. It sounds, though, like a loud frequency hum from an old, failing TV set (currently) living in my right ear. It moves. Sometimes the TV set lives in my right ear, sometimes in my left. Blessedly there is only one set, so so far, not in both ears.

I got a new app that allows me to do a diary of my headache and it tracks the weather. I can see a direct correlation with changing barometric pressure and pain. It tends to hurt more when it drops and  the bigger the drop, the bigger the hurt.
Don't hate me because I'm beautiful...

I have tried a few things out of open mindedness and desperation. I've tried a Cefaly Device.

This hot little number sent electrical impulses into the trigeminal nerve and disrupt the pain signals. I wore it for an hour every day and it was painful (and according to this picture, sucking the life out of me because I look old here). While it was a highly attractive accessory piece, it did not work. Sad. I sent it back and am waiting for my $300 or so back.

I'm currently trying acupuncture and it's, so far, not working beyond when I'm on the table. Wait, I take that back. Last night I had some relief for the entire night. Today I'm in a lot of pain again (whoopee) but that was nice! It does give me a little hope. I am not anti-acupuncture because it helped my neck and I really like Joe, the doctor but so far I don't know if it's helping as much as I hoped it would.

Let's face it, I want 100%, permanent relief.

I'm also trying chronic in a good way. I haven't found anything that seems to work for much other than making me say "Oh yeah. I have pain, but it's over there." In other word, it kind of diverts my attention from the pain to some extent. I use it only when it's really bad. A friend brought me some pills from a coop in West Seattle that I haven't been to, and they seem to help more than anything else, but they do make me super tired. Nothing, so far, I can use on a daily basis.

So there we are. State of the Noggin. It's still there. I am still in pain 24/7 most of the time except when I run and sometimes I get relief. Yay. Then the relief fades, boo.

What are my goals and plans for 2015? Well...I can't keep going on the way I'm going. We talked about me going on disability but I decided I'm not ready for that. I think next school year I will see if I can change my schedule and teach half time. I can't teach full time any more. It's just way too hard to do this with the constant pain. I need more rest, more consistent exercise (which is prescribed for the pain and I never do if it makes it worse), and the ability to stop and lie down when I get dizzy. I hate that I have to do that, but I have to do that. Dammit I hate that I even have to write that. It makes me feel feeble and weak and angry that I am feeble and week. I blacked out today, though, and fell at work. Fortunately it was in my office, into a chair, and it was momentary. I sat there and looked like I was thinking until I was able to get up. FUCK FUCK FUCK I hate that!

But maybe if I'm not doing so much with my brain it can heal. Or maybe it won't, but maybe at least I can have some time every day to do things for me. Don't get me wrong, I'm not saying "I want time to play every day so I don't want to have to work." I mean, yeah that would be cool. But every day I come home and just want to go straight to bed and I don't want that any more. I still do bootcamp at night two nights a week but I have to take a nap most afternoons. I HAVE TO TAKE A NAP! Then when I go it's a struggle to get there and usually I go home and pass out and don't move the rest of the night.

I feel like I'm rationalizing, and I am. I've always worked 50-60 hours a week and now I want to work only 20-40 and I feel guilty. I won't bring in as much money, I will be home and probably won't do as much as home as I feel I should. I just don't know what the right answer is.

Sometimes it's just so overwhelming.