Sunday, June 8, 2008

grieving my past life

I'm going to say it right now: I resent migraine disease, and everything it has taken away from my life.

I graduated college two years ago, a carefree, optimistic, idealistic young woman, about to embark on a promising career in architecture. The economy at that time was much better than it is now, and the job market for new intern architects was excellent. I had my pick of where to work, so I chose a firm whose mission and vision seemed to echo my own goals. I packed up and moved clear across the country, taking a chance on a new life. What better time to do it?

My first neuro, who saw me all through college while I was on Topamax the first time, suggested I try titrating off to "see how I would do". The tapering schedule he gave me meant that I was finished with the Topa before I even got to the West Coast. Fitting, I thought. A new life, no longer a slave to the little Topa pill I hated so.

An immature view, I realize now. Now I know the necessity of good preventive medication. When I was in college, I knew nothing about chronic daily headache or about migraine disease. I just knew that my head hurt all the time, and taking 50 mg of Topa every day meant my head only bothered me about twice a semester, but it also meant I couldn't consume alcohol with the same carefree attitude of my friends.

But what I realize now, what I have realized over and over again in the two years since I came off the Topa, is that that stupid pill that I hated so much is what allowed me to finish college on time, with an honors diploma and double-minor. It gave me a life I wouldn't have had otherwise. There's no guarantee, of course, that staying on the Topa would have meant it would have kept working for me - and that's what I tell myself every day. Because now Topa doesn't do anything for me other than randomly give me new side effects and make me depressed if I take too much of it. I thought at one point that it may have been working, but I no longer have that delusion.

Within a month of titrating off the Topa, the ambiguous dizziness and nausea, that I now recognize as my primary symptoms of CDH, were back. I blamed this sickness on everything: homesickness, adjusting to my new life, allergies, an ongoing fight with my father. It took until December, six months later, to schedule an appointment with my PCP. She treated me for a sinus infection; those antibiotics did nothing, of course, to actually fix my head. By February 2007 I was referred to a neurologist.

Nine months I had already given to this disease, convincing myself it had to be something else. And during that time, I was trying to establish a new life for myself. The weak social ties I had started to forge over my first summer here had already fizzled out. I just didn't feel well enough to go out and drink on weekends. I didn't have enough energy to make plans with people, or join community groups. I did a brief stint, playing clarinet with a local university band, but after a year of that, I simply didn't have the energy anymore.

From February until now has been one preventive after another, in various combinations. Topamax, nortriptyline, cyproheptadine, verapamil, gabapentin, Topamax again. Meanwhile, my CDH and frequent migraines turned into weekly migraines, then daily migraines, and now an ongoing migraine since November that's only becoming harder and harder to treat.

It's not that I resent the time I've spent trying to treat my migraines. I understand the trial-and-error nature of migraine treatment. I resent everything I've had to give up.

I no longer can go shopping or run errands for the most part. Fluorescent lights are a huge trigger for me. Not only do they aggravate my migraine, but certain tints of fluorescents - the kind most retail stores use - trigger diarrhea within 15 minutes of going into a store. Not so conducive to shopping.

I no longer go to see movies in the movie theatre. Seeing movies, especially action movies, in the theatre is both one of my favorite pastimes and biggest triggers. Seeing Pirates 3 triggered one of the first acephalgic migraines that I identified as such.

I no longer drive, except on very rare occasions when I absolutely can't avoid it. I don't feel safe on the road, since I know my concentration is impacted from this ongoing migraine.

I no longer drink. Alcohol seems to be a stackable trigger. It interacts with almost every medication I take anyway.

I no longer eat gluten, dairy, caffeine, MSG, preservatives, artificial sweeteners, high fructose corn syrup, and have severely reduced my sugar and salt intake. MSG and artificial sweeteners are confirmed migraine triggers. The rest do bad things to my digestion so I've cut them out.

I hardly ever eat out, because of my strict diet and because I hardly ever feel up to it.

I no longer do my computer-based design work. Computer screens are a migraine trigger. Working in front of a computer at work is all I can tolerate most days.

I no longer use a desktop computer at home. This doesn't sound like it would be a big deal, but my desktop is much more suited to do most design work. Since I can't do it anyway, DBF and I decided to buy a new laptop for me to use in the living room.

I no longer go to the library. This one makes me very upset. But our gorgeous library has fluorescent lighting, so I can only stop by long enough to pick up books I have on hold. No more Saturday afternoons spent reading there.

I have almost no social life to speak of. Since my migraines have gotten progressively worse as I've tried to start a new life here, it's been hard to form new social ties. DBF and I are going to make more of an effort to have people over this summer, but we'll see if that actually pans out.

But most of all, I no longer just "do" things without considering their consequences. A coworker invites me out to lunch; is there something at the restaurant I can eat? What kind of lighting does the restaurant have? I have to buy a new pair of jeans; do I order them online and risk them not fitting or do I try to buy them in a store and risk fluorescent lighting? We're out of cat food; I have to ask DBF to go buy some - I can't drive to the store and I can't go in there once I've gotten there.

There is a lot about my life that is positive. DBF, for one. A girl could not ask for a more supportive boyfriend. Without him, there is no doubt I wouldn't have been able to make it this far. I would have already had to move back to the East Coast to ask my family for help.

My job, for another. It's been a huge struggle to keep a full-time schedule with my health in such bad shape, but my job has excellent health insurance and benefits, not to mention is a great way to start my career. My firm and my boss have been pretty understanding of my situation and have given me a lot of leeway.

And of course, there's my family. My mom and sister are both migraineurs, and while their migraines have never been as severe as mine, they understand my pain.

Last but not least is my doctor. Without a good doctor I surely would have lost hope by now. I've just started seeing him, but I feel more confident he can help me than the last doc I saw.

It is just so hard to nurture hope in the face of so much failure. Five preventives I've trialed; all have failed. While there are many more to try, it takes a lot of courage to keep trying. And while I've been trying, my migraines have only gotten worse.

And more and more, I find it hard to suppress the question in the back of my mind: what if this migraine never breaks? What if I am always stuck with this pain?

Today I don't have any answers, or any insight to wrap this post up with. So I'll leave you, instead, with a quote from a book I recently finished:

"What will you do, if it does not turn out how you expect?"
"I do not know. Nor shall I worry about it until it happens. I still have an action left to take; until I have exhausted it, I shall not despair." - Robin Hobb, Assassin's Quest

Be well,


antiquityhill said...

Fabulous post MJ. The quote at the end is priceless.

I'm so sorry that you're dealing with all this right now. There are a lot about our stories that are unfortunately, the same. I really feel for you. My usual response to people like us is to tell them to 'Hang in there'. What else can we do?

Did you read my WEGO Health post about writing to those who care for us? You can find it here: Fifteen minutes that could change a life...

Thank goodness you have someone like your DBF that you can count on. He sounds terrific.

I collect really good quotes. I hope you don't mind if I ferret this one away as well. I'll stumble on it again someday and I know it will help me to make sense out of my life.

My WEGO Health Blog

MaxJerz said...

Thanks for your comment, Ellen. Please do feel free to steal the quote. I will say (for the sake of honesty) that it is slightly paraphrased, but the truth of it is kept intact. It's one I will keep close by for sure.

That is a great post. I remember when I was in HS and college, I tried to write thank you notes to my exceptional teachers and professors. It seems that we don't remember to thank those around us enough and it makes such a big difference. I went and bought some stationary a few weeks ago so I could more easily do just that.

Take care, and please do come back to visit often.


Leslie said...

Hi MJ,
Thanks for your comments on my blog. It was nice to hear from you! I have added you to my list of links and will be sure to check back often and keep updated!

Ken said...

Wow, I just found my way to your blog from the carnival and I feel like I could have written almost exactly the same thing about myself. Maybe it'll help to hear that there are others out there struggling with almost the exact symptoms as you. I'm about halfway through my so far unsuccessful TopAMAX 3 month trial in a string of unsuccessful attempts to treat my own never ending migraine. I wish I had something better to say than hang in there but that's the best my scrambled brain can come up with...

MaxJerz said...

Leslie, thanks for stopping by. I've added you to my blog roll and Google Reader both, so I'll be sure to keep up with your posts! :)

Ken, thanks for your comments. It does help to know I'm not alone, even though I wouldn't wish this pain and illness on anyone. I hope you'll come visit often and share your thoughts.

be well,

Migraine Chick said...

Wow...I started crying after reading your post because I really felt your pain and I totally understand what you are going through. It was like you were writing about my life, too. Sending a big hug your way!

Kelly said...

Yes. Yes. Parts of your post, I really identify with. The loss of friends...having to consider consequences of things that used to be "easy"...and I'm not working, so the loss of feeling like a contributing member of society. Thanks for sharing. In an odd way it is comforting to hear others grieve because it helps me to grieve it too.

MaxJerz said...

Migraine Chick, I'm sending a hug right back your way. I'm glad to know others out there understand what I'm writing about, but I hate that others have to go through this too. I tell my DBF all the time that I wouldn't wish this chronic illness gig on my worst enemy.

Kelly, you're right, hearing that others are grieving their past lives helps me go through the process. It helps me to know I'm not alone. I know I say that on the MMC forums all the time, but it really is true. Connecting with others and sharing our stories - as depressing and sad as they may be at times - can be really uplifting, and a way to keep moving forward.

Thanks to both of you for your comments.

Be well,

Alexandra said...

Thank you for mentioning your reactions to flourescent lighting. Lately, even 15 minutes under the wrong lighting can make me want to barf. A committee meeting for 2 hours? (With everyone in the room drenched in scented products?) Forget it. That can easily trigger a 4 day migraine.

Sitting in the doctor's office today, the flourescents started to get to me after only about 15 minutes. I slipped on my dark sunglasses. People began sliding me looks like I was a pretentious jack*** with delusions of "cool". Or a beaten woman. Or a pot head. And I was starting to wonder - am I being a drama queen, trying to get attention because I have a "condition"? Should I just sit there and tank the nausea until the pain starts and risk being too jacked up in the head to drive safely? (THAT'S ANOTHER THING I WAS SO HAPPY YOU MENTIONED - I do NOT feel safe driving when I have a migraine. Pain is one thing, but it does weird things to the way I think!)

Because I was driving my kid, I wore the glasses. (I just pretended I was Lindsay Lohan, minus the leggings.) I did take a quick break so the pediatrician could see I did not have red or black eyes from drug or spousal abuse. Kid's safety overcomes mom's social paranoias.

But this post has helped soothe my fears that I'm "making up" my reactions to the lighting and driving.

Note of hope: My grandfather had severe migraines every day of his life until sometime in his early fifties when *bloop!* all at once they went away. And NEVER came back.

Here's wishing a *bloop!* for you. (Hell, for all of us.)

MaxJerz said...

Alexandra, of course you're not making it up! Fluorescent lighting is a big trigger for many migraineurs. It's unfortunate that it's becoming so hard to avoid it in today's world.

Have you seen this article before?

You may also want to sign our petition, asking Congress not to outlaw incandescent bulbs, which would make compact fluorescent light bulbs much more prevalent.

If it makes you feel any better, I wear big black "celebrity" type sunglasses everywhere now. I've just come to the point where I don't care if people stare. The pain isn't worth it.

And you're right, a *bloop* would be wonderful for all of us!

Thanks for your comments. I hope you'll be back to visit often.

Be well,

CTallmon said...

MJ -

I've been out for a while, and just caught up on your blog. Awesome post. It's so odd to think of what life was before I became a chronic pain person... to ponder who I've become. I find our vast similarities trigger more self-examination than I normally pursue after reading blogs.

I do find, however, when considering my past life, my past *Me* that I can't really do so without seeing all of the other hardships I've survived. My parents named all of their children with the meaning in mind, and I've often clung to truth spoke over me when I was called Radiant Overcomer. This is by no means my first hurdle, nor will it be last.

It's a lovely quote, I'm so glad you shared it. I'll imagine toasting to life with a *virtual* glass of wine with you. :)