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.

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.

Defying Pain

About three weeks ago I got a tattoo. I know, I'll never get a real job, or become a Japanese businessman. I'm sure I'll regret it forever, and I'll never land a decent man.

And I don't care. (For the record, I already have a decent...nay...AWESOME man, a good job, and I'm pretty sure I don't meet a lot of pre-requisites required for becoming a Japanese businessman, not the least of which is lack of equipment.)

I have been planning this for a long time. My husband actually helped me design it. I wanted a word that when I looked at it, it reminded me who I am. I wanted something that would uplift my spirit and be very meaningful to me. I also wanted it to be beautiful. We spent most of our trip to San Diego in late July discussing what word to use. One we both really liked was, "unbreakable" however I wanted it to be big enough so that if someone wondered what it said, they didn't have to get into my bubble. I also didn't want it going up my arm, into my armpit, and down my side. Again, bubble time. So we threw around a lot of words. I didn't want strength, or peace, or fortitude, or supercalifragileisticexpealidocious. I wanted something that defined me, but also gave me strength. I am a strong person, but not always and I don't WANT to always be strong. In fact, I feel that times of weakness are times I learn to be strong. I just felt that, for me, it was a little black and white.

Finally Roy blurted out the word, "Defy!" That was it. We both knew it. It was me to a T! The word has a number of meanings to me. In 2003 I had a Whipple Procedure that saved my life. I defied death through the blessing of early detection through an unrelated CT scan that found a pre-cancerous tumor in my pancreas. I defied the odds by keeping my 100 pounds of weight off that I lost in 2002, through two major health crises. I have always been the type of person that if you tell me I can't do it, I will show you 100 ways that I can to defy you. Don't get me wrong, I am not a "defiant" person in a negative way, but I defy the odds. 

I looked at my arm today as I was driving to meet a fitness client for a workout. My head was hurting and I thought to myself, "I hope I can handle this" and as I turned, my tattoo came into sight. I immediately thought "Defy the pain!" I set my jaw and thought "Bite me, pain!" and I drove on.

Now did that make the pain go away? No. But as a marathon runner I know that my determined spirit can defy pain to continue on to the finish line. 

I am sure to some people this sounds trite, to others silly, and to fellow chronic pain sufferers, ridiculous. That doesn't matter. What matters is how it sounds to me. No, I can't always defy the pain. Monday I spent all day in bed with two pairs of sunglasses and a hood over my head, crying with pain. Nothing helped. There was no defying it that day. But at the same time I can't let every day be, as my friends in the UK say, "A duvet day." I can't let fear of more pain keep me from doing what I want to do. I can't let depression from pain keep me from enjoying my life. Sometimes I just need to remember that I CAN push through things sometimes. If I can't, at least I can try. After all, I don't know how far I can go unless I test how far I can go. 

The y on the word is the flight trail of a dragonfly on the front of my arm. The dragonfly has a special meaning to me for a number of personal reasons. In general, the dragonfly holds great symbolic meaning:

• Change and transformation
• Adaptability
• Joy, lightness of being
• Symbol of the realm of emotions, invitation to dive deeper into your feeling
• Being on the lookout for illusions and deceits, whether are external or personal
• Connection with nature’s spirits, fairies realms

Defying the Pain!

It may not be for everyone, a tattoo, but for me the symbolism is comforting. The fact that Roy came up with the word and designed it for me touches me so deeply because he is not really a fan of tattoos. I love the size because it can be seen easily and there is no hiding it. I think that the reason I wanted that is that my chronic condition is "hidden" and no one who doesn't know me can see it. It makes it even more of a challenge because there are times when I hurt so bad I have vertigo and am not able to walk without being near a wall. It makes me worry that someone might think I'm drunk, or due to the fact that I run a lot, am faking it. I think I wanted something that showed. 

Training with Pain

I am slowly coming to accept/fear/realize that I might be living with chronic pain for the rest of my life. I wish I could clearly communicate how much this has changed my life. I know chronic pain changes EVERY life, but of course I only have my life.

It's summer and my usual summer routine for the past 9 years or so has been; get up early and go for a run or teach a bootcamp, then go for a run. Eat breakfast and then saddle up the bike and ride 25 miles to go see a movie and have lunch. Later in the afternoon we might kayak for an hour or so, or I'll meet someone for a second run. Two or three mornings a week I'd head to the lake before the crowds and swim a mile. That was my life. I loved that life! LOVED it! We lived and laughed and I just felt so free. Why? Because for many years prior to me getting my life together in 2002, I was obese and those things were only dreams.

Now I get up to head to bootcamp because when I planned my summer schedule, I thought I'd be rid of the headaches. I sit in the parking lot praying that no one shows on a day with a bad headache. If they don't I go home and either go back to bed, or go for a run if the head isn't bad. If I go back to bed I spend the day beating myself up for not going out. It isn't a lack of desire, it's that exhausting round of "How bad is my head? If I run, it's going to hurt more. Well what do I have to do today? Can I do the run and then chill and let the pain subside? It doesn't mean we don't kayak or bike, but it's one or the other, not both.

I think that because people see me doing things like teaching bootcamp and training fitness clients, they think it must not be that bad. I worry they think I'm 'whining' about it when I'm not. I am truly trying to hold my shit together long enough so that I can just get through the hour. Today I trained a client and had to stop my own demonstrations a few times to "monitor" but what was really happening is that so much pain was getting in the way of what I was doing, it was stop or fall down.

Today was a very rare summer evening session where no one showed up, and I hate to say I was glad, but I was. I got new glasses this morning and they took my headache from a "about what I deal with daily 4-5 level" to 11. It was so bad that I was in the garden store and I kept having to stop to keep from throwing up. Now that is NOT like me. It finally hit me that it might be the new glasses, and when I swapped them out it went down from 11 to about 7 which is better, but still is just craptastic. The rest of the day was just a cloud of pain.

I worry if I accept that this is it that I will either fall into a depression or I will stop trying. I know that I have the ability to make that choice, but I worry that if I say "Okay, this is it..." that I will let it define me. Until my brain bled, I was someone who was often called the Energizer Bunny. If you asked someone about me, they'd laugh and say I was crazy! I'd run marathons for fun, and my goals kept getting bigger every year. People who don't work out would accuse me of having "exercise bulimia" because they could not wrap their brains around someone who loves playing outside more than a 7 year old with a new bike. If I accept that chronic pain is going to be a part of my life, does that re-define me? I want to be known as the crazy, motivating coach who treats everyone like rock stars and makes them think they can do amazing things!

I just don't know. It's like there is no handbook for how to handle life when it changes dramatically in some fashion, but it is not something others can see. If I had an amputation, or a wasting disease, people would know and maybe I'd be able to see it and accept the difference. Now I look in the mirror and I see the same old me I've always seen with a tiny bit more muffin top than I'd like. But the inside isn't that person any more. The inside is scared and unsure and stops to think "Can I commit to doing that? What if my head is over the top that day?"

So I did a workout today but I didn't run and it's really bothering me, but the idea of getting my noggin a bouncin' up and down makes me nauseous. I want to go to bed, but I don't want to give into it and let the pain tell me how to live my life.

Okay, maybe I'm not to acceptance quite yet...

I Heart Summer

Next to Christmas, summer has always been my favorite time of year. Because I am a teacher, I do not have the opportunity to work during the summer. (Just to clarify, no teacher gets paid for summers off. We all get paid only for the hours in our contract and some are lucky to get extra time for special projects, but no vacation is paid.) I use this time to reflect on my teaching as a high school IT teacher, and to teach summer fitness classes and help others find their fitness groove. I also try to kill my husband. Well that's his definition of I get us out playing on the water, kayaking, biking to nearby and not-so-nearby cities, and all sorts of fun things.

This morning, my first official day of summer break, I felt really down. I thought back to last year. I remember still struggling so much with fatigue and brain pain, I had to cancel almost all of my fitness classes. It was really a hard thing to do because I felt I was letting people down. I didn't cancel the running group because I had a group of people who volunteered to assistant coach with me. We arranged it and I felt great that I could still do that, but very sad about the rest of it. Sadly most of the people who volunteered to help were unable to; some for very good reasons (like having new twins is HARD!) and some for unexplained reasons. Some just floated out of my life with no explanation. I still wonder what happened; what I said or did. That was very very hurtful and it still stings quite a bit because it isn't like I wasn't thankful, or was inconsiderate, or was faking it. Maybe they did think I was milking it.

I suppose that happens with most people who deal with chronic pain. There is always going to be those who think you're over-reacting. What are you gonna do?

I was sure that if I took last summer off I would return to work as a teacher rejuvenated and that would be the end of my healing.

I'm so afraid that it was the end of my healing, but that wasn't what I meant when I defined "the end of my healing". I thought I'd be completely better and the headaches would be gone, my energy would be back, my brain wouldn't reboot, and I'd be my old self again.

Since last summer I have seen improvement in my fatigue level. It isn't a problem any more, although I still need more hours of sleep per night. That's not a huge deal. What I have seen no improvement in is the brain pain. That's why I say I fear that was the end of my healing.

This morning I got out for a run early enough to take my older dog (he really is affected by the heat) and Flik my little Bo-Chi (Boston Terrier/Chihuahua mix). Flik is a BEAST when it comes to running. He has the terrier musculature so he's a great little runner. He's run up to 13 miles with me. Wiley has done up to 20, but he's starting to peter out around five now. Makes me sad. Anyhow, got out with them while it was still cool. I could feel the headache racheting up, so I didn't put it off. Unfortunately my plan to run five miles was dropped to three. My head hurt, I was dizzy, (common when my head is bad), and I had to stop early.

That's when I cried a little. I had a little pity party because I'm not who I was two summers ago. I hate that. I hate that I can't just hop out of bed, teach a bootcamp class, run a few more miles, then go for a 30 mile bike ride. (This is my definition of about as perfect a summer day as can be, provided my honey is with me.) I know I'll still be able to do all of those things, just probably not all at once.

So what can I look forward to this summer? I am teaching five bootcamp classes a week. Three will be at 6 a.m. and two at 5:30 pm. I think that's going to be just fine, and I do have backup for evening class. I will be teaching a stroller class at 9 a.m. two mornings a week. It'll be a low impact class, so I think I'll  be okay. I also have running classes on the weekend. I'm VERY thankful that I will be doing all of this, and I think I'll be okay. I know some days will be hard but I think I can power through, I just wish I didn't have to power through. I just look forward to the day when I don't even THINK about pain.

Headache today: about a level six.

If I'm Going to Have an Ice Cream Headache

...at least I should get some damn ice cream!

I wish I could clearly communicate what it feels like to have this brain pain. Sometimes there is pressure, sometimes there are tingles (almost feels like my brain is vibrating), usually my ears ring (but they aren't today, and really it's only one ear...maybe it's aliens trying to communicate), often my ears feel like they are "hot" and not in a good way. Today it's my ice cream headache where it feels like just after the spike in the ice cream headache when it still hurts but not as bad as the spike. So it's like the feeling never really goes away.

I didn't take any pain meds today, just some excedrin because I don't have any more refills and I don't want rebound headaches. It's also the end of the school year and we have summer school starting next week. I'm the IT person (and a teacher, I wear BOTH capes, 'cause I'm cool like Fonzie) and that means I have to have all computer labs ready to rumble. Unfortunately since I lost some of my memory last year I am flying blind on how to do this. Our school burned down a few years back and we didn't have summer school for awhile. Last year was the first time in years, and I am sure I set it up...who else would have? Unfortunately I literally have no memory of it. I did find an email that I sent out with usernames and passwords, so obviously I did it. I remember things I have done a lot before the brain explosion, quite well. In fact while I was in the middle of the short term memory issues where I would sometimes forget what I was doing while I was doing it, I could teach concepts I've been teaching for years. (It helps that my curricula is super-organized and I write it all myself). But if I had to do something new, I'd read about it before lecture, have it bookmarked on a computer, and ta da I'd totally forget it. Or math...that was fun. I would try to do math and my brain for a few months, could not do basic math. I am told I once argued with a student that 5+2 was 9. I learned to just laugh it off, say "Sorry! Brain damage!" and move on. It would hurt too much to force it.

But I digress...this has left me setting up for summer school with very little to go on. I think I'm doing okay, but it is a lot of stress. So today I chalked my headache up to stress. I think that was part of it. Part of it is that it's going to rain tomorrow so the barometer is dropping.

I don't know whether I should feel proud that I do get so much done with the brain pain, or if I should slow down. I guess my worry is that if I slow down I am giving in. I mean I'm 48 years old. I take excellent care of myself (I lost 100 pounds and I've kept it off for 10 years). I could live another 51 years (since my husband is aware that I fully plan to live to be 99 and then I'll reassess my life plans). Do I want to "slow down" when I'm barely halfway through my life? Hell to the NO! So I keep going. Today I managed a few things:

1. I got dressed. I know you're jealous of my accomplishments.
2. I went to work as a teacher (I teach high school IT classes).
3. I did not kill any children. Parents tend to frown on that.
4. I managed to set up the user accounts for summer school.
5. I set up the menu for week one of clean eating (first week school is out).
6. I taught a kick-ass bootcamp, although I couldn't participate all the way.
7. I donated a small amount to Hands for Baby Jameson. Check out Hector Picard's page and be prepared to be awed. What an amazing man.
8. I wrote this blog post. Well I'm writing this blog post. 

So back to the ice cream. Today's headache is brought to you by Ben and Jerry and the letter 7, which is about the pain level I have been dealing with most of the day. So where is my ice cream?

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.