Trying to Find My New “Home”
By Kerrie | January 28, 2010
Home is where I want to be when I have a migraine. Being nearly housebound since I moved to Boston in August, you’d think I’d be all set. Except that “home” is far more metaphorical than literal. In Seattle, my home was on the couch in front of the fire. Even if my apartment here had a fireplace, it wouldn’t be the same. Home is an emotional place, an emotional state. One that is found by feeling it. One I haven’t found since moving to Boston, not in my apartment or in the city.
Driving from the airport into Seattle the first time Hart and I visited, I knew I’d found my home. In fact, when I was 13 and first visited the Pacific Northwest, it felt like home even though I wasn’t aware of what that meant. Now I’m 3,000 miles away and I feel the distance acutely. I know Boston is a great city and there’s a ton to see and do in the Northeast. Enough friends of friends are here that I’m confident we can build a great social circle. The move isn’t intended to be permanent. All this logic doesn’t erase the ache for Seattle and the forests of the northwest.
Hart and I went back at Thanksgiving. The first morning, we went mushroom hunting. My heart sang as we drove through the city, seeing the water and evergreens. The ferns, the moss and the drizzle in the forest felt so good that I turned my face to the sky to soak it in. Then a severe migraine hit on the drive back to our friends’ place. The subsequent migraines were so bad that, except for a massage appointment, I didn’t leave their house until we went to the airport, 10 days after our intended departure. I have to wonder if not wanting to leave my beloved city was the primary migraine trigger.
Over the last month, the migraines have improved steadily. I even went to Hart’s work’s holiday party Tuesday night and had a great, low-pain time. I also met a lot of new people, all of whom were curious about Seattle. Talking about my city was soothing yet heartrending. The next day, I stumbled upon The Place I Love: Songs About Longing, written by someone from Portland who recently moved to New York. Listening to the songs she shared was another bittersweet comfort.
Seattle’s lakes and trees and cranes and Space Needle fill my soul. Even when I didn’t leave the house, the glimpses out the windows cheered me. I didn’t realize how much the city carried me as I struggled with an ever-worsening chronic illness. Moving to Boston was the right choice for Hart and me and I want to make it home while we’re here. But how do I find my place in a city that doesn’t nurture me?
Topics: Coping | 8 Comments »
Finding My Life After Years of Saying “I Can’t”
By Kerrie | January 27, 2010
Telling me not to do something is a surefire way to get me to do it. My mom swears reverse psychology was the only way to keep me in check. So it seems laughable that my motto for the last two years was “I can’t.” There’s no laughter here, just sadness at the realization I’ve held myself down. In trying to not overextend myself and avoid migraine triggers, I have lost myself and my spunk.
I stopped reading in January 2008 when I noticed that it triggered migraines. I also unwittingly handed migraine control of my life. I could only think of it in terms of “I can’t read” and “I can’t work on the computer.” That was just the start. The list of what I couldn’t do grew quickly. I couldn’t go places with bad lighting or loud noises, do any exercise that raised my heart rate (including yoga), go to movies, play Rock Band…. Eventually coming to rarely being able to leave the house.
All along, I thought these were choices migraine made for me, not ones I made for myself. To a large degree they were. These (and many other) activities did trigger migraines. Ceasing all of them, however, didn’t make the migraines go away. I’d eliminate one trigger, then another would pop up. The migraines have only gotten worse.
Now I wonder if giving my power over to migraine worsened the illness. By abandoning activities I love, I crippled essential elements of my identity — an identity already ravaged by migraine and depression. Restricting myself so I don’t overdo it or not engaging in activities I love hasn’t made me feel better. It has curtailed my personality and fed my sadness.
Pushing boundaries is what I do. Actually, charging right through boundaries is what I usually do. When that didn’t help the migraines, I held myself back, playing it safe to a fault. Now I’m practicing nudging the limits, with good results.
- Using the largest font on Hart’s Kindle
, reading no longer triggers a migraine every time. If I want to read, I try it out for 10 minutes. If I feel worse than when I began, it is time to put the book down. (Though I am annoyed that I have to buy books instead of getting them at the library.)
- The migraines aren’t always worse when I walk. Sitting on my couch or lying in bed aren’t my only options. I can stand in the kitchen. It may take an hour to load the dishwasher, but I’d otherwise spend that hour on my butt or back.
- Showering often makes the migraines worse, but, again, not always. Two days last week it did. I had appointments both days so I meditated/napped for 45 minutes to regain my strength. I was able to enjoy the next four hours of both days.
- Raising my blood pressure through exercise always triggers a migraine. Or so I thought. I’ve walked on the treadmill maybe 15 days this month and it has only triggered three migraines. Many days I only last 10 minutes, but yesterday it was 37. Quick I am not, sometimes I’m not even walking two miles an hour. But moving my body feels so good.
I got so scared of the migraines that I stopped doing things that bring me joy. I’m finally seeing the place between too much and not enough. Slowly, gently. I’m coming back to life.
Topics: Coping | 3 Comments »
Asking for Help & Beginning to Heal
By Kerrie | January 13, 2010
Since stubbornness is one of my most prominent traits, I long thought sheer tenacity could snuff out the migraines. If not through willing them away (a useless endeavor), then by relentless pursuit of treatment. Instead, I have spent the last two years feeling like the migraines and accompanying depression had conquered me. Being obstinate wasn’t enough. Only by asking for help has my despair transformed to hope.
“I can do it myself” is probably my most oft-uttered sentence. When it comes to my health, I can’t. Sequestering myself only made it worse. The isolation wasn’t intentional. It started a decade ago with me thinking that talking about my ailment would automatically make me a complainer. It ended in November with me reaching out to my friends, screaming and crying and holding their hands as I fought through the worst migraines I’ve ever had.
Letting people know (and see) how bad the migraines truly are and the havoc they wreak on my entire nervous system lightened my heart. The severity of my depression since Hart and I moved to Boston is more than I wish to revisit. It is far from gone, but I can now see a way out.
People often tell me I’m brave for dealing with illness as well as I do. Asking for help took more courage than anything else I’ve faced. I was convinced I had let everyone in my life down. That canceled plans and unreturned phone calls (and emails and text messages…) made them love me less. Completely untrue.
If you are in a similar place of hopelessness, please, please reach out to the people you love. They love you whether or not you are sick. The rewards of asking for help make the necessary vulnerability worth it.
Topics: Coping, Treatment | 13 Comments »
Kerrie’s Health
By Hart | December 14, 2009
As you can’t help but have noticed, Kerrie has not posted to The Daily Headache in months. Her migraines have been increasing in intensity and duration over the last year, starting in our last months in Seattle this summer and continuing through our time in Boston. Since we’ve moved she’s been largely homebound, only getting out for a few hours a week to take a walk or run a few errands with me. In addition, looking at the computer has become a significant trigger which has made writing posts, responding to comments, or emailing friends almost impossible. Beyond the headaches, which have reached a new severity, she has constant nausea, common bouts of vertigo, muscle pain and stiffness, stomach cramping, and extreme fatigue.
The situation reached a head when we travelled back to Seattle for Thanksgiving. Kerrie has had an unrelenting migraine for more than two weeks which prevented us from going home on three separate tries and sent her to the ER on Friday. We never thought she’d go to the ER for her migraines but the combination of unrelenting level-9 pain and new stomach cramping/convulsions convinced us we needed to do something. They were able to reduce her pain to a 5 and get her a good night’s sleep, but the next morning the pain was back as intensely as ever.
We finally made it home on this past Wednesday by loading her up on painkillers and relaxants and shuttling her through the airports on a wheelchair. We were fortunate to have friends from Seattle willing to travel back with us to help out, and to get a row without a 3rd person in it so that Kerrie could lie down for the whole flight. (Our friends took some pictures along the way… when she’s feeling better she really wants to blog about the ER and flight experiences.)
She’s been suffering for years but I’ve never seen anything like the last few months and especially the last couple of weeks. We are forming a new plan of attack to get her help, and are hopeful for a new headache specialist that we are scheduled to see in January (and hoping to get into sooner.) I’m posting here today to let all of you know what is going on and to ask for your long-distance support. Please add a comment below wishing Kerrie well and I’ll read them to her while she’s working to recover.
Thank you all for your support, and I hope your heads are fairing better.
–Hart (Kerrie’s husband)
Topics: Coping | 34 Comments »
Why, Hello There!
By Kerrie | June 8, 2009
Along with the Seattle sunshine, I’m rejoining the world after a long hibernation. It was another terrible spring for nausea, but my migraines and headaches have been relatively mild. (More on that in a moment.) Whenever I have felt decent, I’ve been getting ready to sell our house and move to Boston.
That’s right, we’re moving to Boston in August! Hart was offered a job he couldn’t refuse. As much as I love Seattle, I’m excited for an adventure. I’m also terrified, but isn’t that a part of every adventure?
I hope better health and more time to write will coincide with the move. Although a change of location is unlikely to spur the change, birth control pills might. My migraines and headaches reduced in frequency and severity after I had taken birth control pills for three months. Unfortunately, they also caused horrendous nausea.
I’ve spent the last few months drugged up and conked out. Deciding I was better equipped to handle head pain than nausea, I stopped the pills last week. Sure enough, the nausea is gone, but head pain and general wooziness are back. I’m seeing a gynecologist tomorrow to determine what to try next. I imagine it will be a brand with different synthetic hormones. I hope I won’t have to wait another three months for them to take effect.
So, that’s what’s been going on in my life. I hope you have been doing as well as possible!
Topics: Coping, Treatment | 22 Comments »
New Migraine Drug Telcagepant on Hold, Perhaps Permanently
By Kerrie | April 24, 2009
Telcagepant, a migraine abortive with much success in clinical trials, is now on hold. It will not be submitted to the FDA for approval this year, as Merck previously announced. Originally studied for intermittent use, patients in an early trial to see if the drug could be used as a daily preventive developed high levels of liver enzymes.
The article doesn’t explain why, but here’s my take: People with frequent migraine episodes often take abortives more frequently than recommended. Even using telcagepant as an abortive, these patients could also develop high levels of liver enzymes.
The bad news for migraineurs is the findings could be significant enough to shelve the drug permanently. Merck, which was banking on the drug, can’t be too happy either.
What are your thoughts on why the drug is on hold?
Topics: News, Treatment | 8 Comments »
A Chronic Illness Comic: When People Try to “Fix” You
By Kerrie | April 10, 2009
This comic from the Single Gal’s Guide to RA is perfect! Just subsitute RA with your ailment. Thanks to maxjerz on Twitter for the link.
Did you know The Daily Headache is tdhblog on Twitter? So are a bunch of other folks with headache and migraine. Set up a Twitter account and you can follow any of us. All the cool kids are doing it!
Topics: Community | 6 Comments »
FDA Approves Generic Version of Migraine Preventive Drug Topamax (Topiramate)
By Kerrie | April 3, 2009
The FDA has approved production of topiramate, the generic version of migraine preventive drug Topamax. It will be available in multiple strengths from 17 different manufacturers.
This is great news for the many people who have found relief from migraines or headaches with Topamax. Except for the side effects, which many find intolerable, Topamax is often called as a “miracle drug.” I don’t believe in miracle drugs, but one that can help so many people is pretty impressive.
Ortho-McNeil Neurologic’s patents on Topamax began expiring last year.
Related posts:
- Trouble Thinking on Topamax? Study Finds “Language Disturbances”
- Antiepileptic Drugs Linked to Increased Risk of Suicidal Behaviors and Thoughts
- Preventive Drugs Improve Quality of Life for People With Migraine
[via Somebody Heal Me]
Topics: News, Treatment | 22 Comments »
Migraine Day Turns Into Multi-Day Migraine
By Kerrie | April 3, 2009
My scheduled migraine day ended with a trip to the emergency room for Hart. He had chest pain and wanted to be sure it wasn’t serious. It wasn’t — he’s perfectly OK. But we didn’t get home until almost 4 a.m.
The stress, caffeine I drank at the hospital, and messed up sleep schedule has extended Wednesday’s planned migraine into multiple migraine days. The nausea has been unbearable and I’ve been drugged to the hilt. That made yesterday not too bad!
Hart is out of sorts too. He went straight from the airport to the ER after returning from a three-day business trip to Atlanta. Except for constant drilling outside — we have to replace the main water line to our house — things are quiet around here. Baseball season starts Sunday and MLB has free games online this weekend. I imagine we’ll spend a lot of the weekend watching baseball. Sounds perfect to me!
Rereading this post, I’m pleased to see my automatic response is to turn lemons into lemonade. This isn’t the case all the time, but is my default. I don’t know how I would survive migraine life without a positive attitude. I’m so grateful.
Topics: Coping | 5 Comments »
The Trade Off: A Scheduled Migraine Day
By Kerrie | April 1, 2009
I drove more than three hours to my sister’s house yesterday so I could surprise my nephew on his 10th birthday. I had to be home for plumbers this morning, so I could only stay for a few hours. Cramming nearly seven hours of driving, lots of caffeine and bad-for-me food into 13 hours ensured I’d be sick today. I went anyway.
After years of constantly overdoing it and constantly being sick, I learned I become terribly ill when I push myself too much. Now I know to hold back; sometimes I think too well. I’m stuck at home with migraines so often. There’s only so much time I can give up because one might come along.
Last year, a friend taught me that I don’t have to shirk anything that might make me sick — even if it is something that I’m absolutely positive will result in at least a day in bed. She showed me I can choose certain times to push myself without doing it every single day. The trick is knowing one day of indulgence can lead to one (or more) days of feeling awful.
When planning yesterday’s trip, I factored in today as a sick day. Other than letting the plumbers in, I made no appointments or plans. I stocked up on easy food and checked out a good audiobook. By intentionally making a trade off, I feel no guilt.
I know I should never feel guilty for being sick, but I rarely do what I should. Today I can see what a reprieve it is to just let myself be as I need to be.
Related posts:
- Balance is Overrated: Choosing Fun Despite Knowing Vengeful Migraine Imminent
- Balance & Illness (and Always Overdoing Pushing Myself Over the Edge)
- A Banner Day
- Walking the Tightrope
- The Spoon Theory of Illness
- Balance? Yeah, Right
Topics: Coping | 7 Comments »