Tuesday, May 28, 2013

Flexibility is on the menu

Today was a GREAT day, head-wise. I had a headache that went from 5-8 on the pain scale every day since last Wednesday. However, I am proud that I was still able to run 13 miles on Saturday and 14 on Sunday. Monday, though was a rest day.

So today when my head was feeling much better, even with periods of no pain, I was thrilled. I couldn't WAIT to get home to run. Got home, changed my clothes, grabbed two of the dogs, and out I went. But for whatever reason, I was not feeling good. Usually if I start and I'm wonky, it'll settle within the first mile. However when I passed mile two and my disconnected feeling was still there, I knew that I needed to stop. I called Roy and he picked me up. 

I am learning patience and flexibility. I know that there are some who might say "If you can run 13 miles, you do NOT suffer from chronic pain." The truth is it is BECAUSE I can run long distances that I am living with, not suffering from chronic pain. As an ultra marathoner I have the capacity to put pain on hold. When you're in mile 24 and you know you have 8 more miles until the end of the 50k you learn to take quick body inventory and move on, putting any non-consequential pain out of your mind. It is because I can do that that I think I am doing so well living with the chronic daily headaches. 

I was disappointed today to have to call and finish two miles short of my minimum goal, but like there are times in a race when I have to know when to push on, and when to be smart, today I had to listen to my body and be flexible. 

Today there are a number of storms passing through. Look in one direction and the sky is blue with nary a cloud, look in another and it's black and menacing. In one direction everything is calm, in another the wind is blowing. So throughout the day I'd be feeling good then get a spike of pain that might last 2 minutes or 20. I think that's what was going on as I ran. The weather was just messing with my balance and it made me feel disconnected and like I might fall at any time.

Oh well! I got to hang with my boys (Flik the Bo-Chi and Wiley the Shepard-Heeler) for awhile and be out in the sun! I did finish another mile of incline work on the treadmill so I got 3.5 in today. Not what I wanted, but flexibility is the word of the day. 

Wednesday, May 22, 2013

Started out as a good day, but...

...then about 10 a.m. I got a searing headache in the back of my head. I was helping a student and wanted to just sit down and close my eyes. Hate when they come on like that. I miss the old me. Yesterday I got home, did some housework, had dinner, and then went to bed. No run. No time with my husband. Just bed. I wish my neurologist would understand that these aren't just "Ow I have a headache" headaches. I don't know if I minimize it. He just doesn't seem to get that I need some relief and not just pre-treatments that don't work (Amitriptyline). Sure on good days when the headache is light, I get a lot done, I go for runs, I teach bootcamp classes. That makes it seem like "Well it's not too bad if she can do that, right?" The truth is, too many days I am in bed all day. I've missed so much work that now I pay for every day I'm out (no more sick leave so I have to pay my own benefits and receive no pay on days I'm out). I'm just trying to make it through the last day of school with no more days off, so Roy drives me some days. Unfortunately today I didn't feel too bad, so I didn't have him drive me. :(

I am not this person who whines, cancels plans, feels "sick", talks about medications and treatments. I have specifically worked HARD to ensure that my body does not sustain damage due to poor diet and lack of exercise. I am all about being proactive and taking control of my health, but I can't do that any more...at least not right now.

Some days I think "Surely this will end at some point, right?" After all, prior to the subarachnoid hemorrhage I had next to NO headaches. I was rarely ever sick. If I took sick leave it was most likely a personal day. Then on January 28 that all changed. The neurosurgeon said the headaches would go away within 4-6 weeks. Then when I was passed on to a neurologist because the neurosurgeon does not specialize in non-surgical treatments he kept saying "I still think they're just going to go away."

He isn't saying that any more.

It's just so damned frustrating. What if this is my life? I feel like "Well, then you need to learn to live with it and move forward" but damn it all to hell I do not WANT to learn to live with it! It is not fair that I had a brain hemorrhage. I did everything right. I am willing to work hard and to put the time and energy into resolving this. It is just maddening for this control-freak not to have any control.

Thursday, May 16, 2013

I Want Normal Back

On May 2 I had botox treatments to help with the headaches and this week I thought it was working. I can't tell you how exciting that was. I knew it was not going to take all the headaches away, but the hope was that it was going to mean the intensity was a lot worse.

Monday we had one of those "If you don't like the weather, wait 30 seconds and it will change" days. We had wind storms, hail, torrential downpours, sun, thunder, lightning. Normally a day like that would send me through the roof, but it didn't. I had a headache, but it wasn't horrible and in fact I came home and ran, I taught bootcamp...just a great day.

Then Tuesday another great day. Hardly any headache. I felt SO good. I had dinner with friends, went home and took the dogs on a HARD run, just was on top of the world. Wednesday morning I actually said out loud, "I think it might be working!" Eek! So happy!

But what goes up, must come down. I suffered through the last half of the day. I monitored bootcamp on pain meds, and held my 5k class. I came home and crashed.

Today is worse. I am so defeated. I just feel like I will never ever be normal again. I should be on top of the world. We have tickets to the SIFF and the world premiere of Much Ado About Nothing. We will be watching Nathan Fillion and Joss Whedon walk the carpet. I have been so excited about this, but all I want to do is head to the ER and get a shot to make the pain go away. It Hurts So Bad.

Wow...I'm listening to a TV show on my iPad and a lady just said, "I want normal back."

You said it, sister. I want normal back.

Friday, May 10, 2013

Top Ten Things Best Things About Chronic Pain

  1. No need to stock up on ibuprofen or acetamin...aseeto...ascorit...that aspirin stuff because it doesn't work anyhow.
  2. Easy out for pesky plans you were looking forward to.
  3. Pajamas always clean because you wear them so much.
  4. Catch up on all the faboo daytime TV.
  5. Learn more about Low-T, reusable catheters, and Cialis than you ever cared to know from said daytime TV.
  6. Buy a HoodiePillow and don't feel bad 'cause you did.
  7. Awesome assortment of sunglasses to cut the light that go with every outfit. 
  8. That last ten pounds you wanted to lose? Don't worry about it. It's set up permanent residence.
  9. Sexy new fashion accessories like an ice cap and face mask.

Thursday, May 9, 2013

Double Ewe Tee Eff

I am tired of venting on Facebook and I'm sure my husband is tired of my venting to him. After all how many ways can you say "I have a headache" before people start to roll their eyes and mutter "STFU" under their breath...or worse, HIDE YOUR UPDATES FROM THEIR STREAM!

My god, if they hide my updates they will not see my pictures of my dogs, and random photos of my food or see how many miles I run a week. How will they survive without knowing Every Moment of My Life. As my friend Jen used to say, it's Tory 101 and it's a required course.

So back up. I have a headache. Why is this worth blogging about? Because it is May 9. (Whoa, birthday of a junior high boyfriend...why is that random piece of info taking up brain real estate?) I have now had a headache for a grand total of 467 days. That means I am officially suffering from chronic pain known as Chronic Daily Headaches.

"Big deal" you might say. "Everyone gets a headache every now and again." Yes, they do. I didn't. I rarely EVER had headaches until January 28, 2012. If you happened upon this by accident you don't know me, so let me share a little background.

I am a wife, teacher, dog-mom, personal trainer, weight loss coach, and running coach. I teach high school IT classes to kids who are ready to start preparing for a career in IT in high school. In 2002 I lost and have kept lost, 100 pounds. I am extremely active; I run marathons for fun. I went from couch potato to adult-onset-athlete. As of today I've run 76 marathons or ultra marathons (26.2 is a marathon and my longest ultra was 50 miles). I bike, I kayak, I do the odd triathlon every now and again. I eat pretty healthy most of the time. So there is no reason whatsoever that I would have a brain hemorrhage.

Nevertheless...I did. On January 28, I had held my first marathon training class of the season. We ran an easy four miles and before that ran about two with my new 5k class. It wasn't hard and I didn't overdo it. Roy and I decided to go see The Descendents. We were standing in the lobby, a friend had come up to me and asked me a question. I turned to follow Roy into the movies when I felt and heard something that was not right. It felt like someone had hit me in the back of the head with a board. The pain was sudden, excruciating, and completely out of the blue. I grabbed my head and said "Oh my God! My head! Roy my head hurts!!" He looked puzzled and asked if I was okay so I took inventory. I was still standing, it was "just a headache" and even though I felt nauseous it didn't seem like anything truly bad was happening. I said "I think so" and followed him into the movies. It was dark so we sat in our regular spot (third row center). As soon as the movie previews started, I thought that someone was throwing lightning bolts into my head through my eyes. I doubled over not sure if I was going to throw up, pass out, or both. I tried to say "I think I need to go to the ER" and it wouldn't seem to come out. Roy said "Do you think we should go home" and again I did inventory and sure I was overreacting, I said "No. It's just a headache." So we stayed for the movie.

I'll wait while you say "You idiot! You could have DIED!" a few times. No go ahead. I can wait.

Feel better? Me too. I was an idiot. Long story short, I finally posted later on FB that I had the "worst headache of my life". I got a lot of help from migraine sufferers (coffee, Excedrin) but when people who work in the health industry started telling me to go to the hospital (as I was squinting trying to read without letting too much light into my eyes), I thought it might be a good time to take heed of those and the multiple text messages from my friend, Amy, that said "Get the hell to the hospital!!!"

Three weeks later I got out. I had no clue how much this was going to impact my life. I was in a lot of denial in the hospital, attributing the pain and odd sensations to the medications I was on. I had excellent (and expensive) care but I literally thought I would get out on Thursday and return to work the following Tuesday (after a 3 day weekend).

Fast forward 467 days and I still have a headache. After two months post-release my neurosurgeon, with no clue as to why I still had headaches, passed me on to a neurologist. He has tried a number of medications and every once in awhile I'd think something was working, only to fall right back into daily headaches with 3-4 bad ones a week. (I had about 4 weeks of lighter headaches and only 1 bad one per week in the summer of last year when we had very stable weather.)

Chronic pain is defeating. It changes who you are and how you feel towards life. Praise the Lord almighty I am NOT suffering from depression because I truly can understand how someone could get so low that they would take their own lives after this much chronic pain. If it weren't for the fact that I do have good days, I would go insane. There is no two ways about it. In that I am exceptionally blessed! But it just gets OLD when your days revolve around pain. It makes it hard to make plans. You know that some people don't believe you when you have to cancel. You also know that good days make people think "How can she run on Sunday and then stay home from work on Tuesday because of pain???"  There is a correlation to weather--when it changes I get a headache. Fortunately the weather only changes in the pacific northwest once or twice a day. O_o

Oh, I just realized I didn't share what I had. I had a subarachnoid hemorrhage. Doc says there is no reason to believe I would ever have another one (good news) and that I have no AVMs (more good news) or aneurisms (yay for good news). I probably did NOT die because I was so fit and had a very low resting heart rate. Since I sat down and relaxed almost immediately I had a better outcome than had it happened when I was running or in an excited state. (Yes, SAHs often happen during sex. No such luck here.) I'm glad I didn't die because how embarrassing would it be to have to carry THAT through the hereafter?

"Well what brought you here?"

"My brain exploded before a George Clooney movie while I was holding a Coke Zero. At least I saw the movie!"

Could be worse. Another common time to have an SAH is on the toilet. Then I'd have to just wear a button that said "Do not ask. No really. Do NOT ask."

So there it is in a nutshell. I had a big bad headache. Worst of my life. A headache so bad, it changed my life. A week ago I had 30 Botox injections to try to control the pain, but it hasn't helped yet. I've also tried:

  • Topamax (made food taste like ass, caused me to lose weight (darn), made me tingly. Did not help.)
  • Verapamil (caused me to get dizzy and feel disconnected. Did not help.)
  • Propronolol (caused my already low heart rate to go so low that I had no energy. Did not help.)
  • Amitryptiline (makes me totally tired, has not helped, but I'm still on it.)
  • Botox injections (the jury is still out on this one, so far no love)
So my WTF is not only What the F but Why the F. No, I don't wallow in Why the F all the time, but sometimes I just get pissed. I did everything RIGHT! I eat well, exercise, kept my blood pressure low, stayed active, did not do stupid things...no drugs, alcohol, supplements. There is no reason that this happened and on days like today when I am having another fucking rip snorter of a headache, it's gorgeous out and all I can think is "I can't wait to get home so I can just put on an ice hat and a mask and curl up into darkness.