Monday, June 9, 2014

A day when nothing cooperates ....

All of you know I have intractable migraines. A migraine is bad every day, but some days it's really bad--make you want to curse God and scream at the world and die bad.  Today was one such day.  As soon as I cracked my eyes open,  I immediately longed to be back asleep where I felt no pain.  I felt as though someone had my head open wide, and was stirring my brain with a whisk. Everything in my head felt loose,  as if it were moving against my skull.  My eyes felt like they were being scraped. My eyelids felt like sandpaper.  I immediately began to cry because the pain was so bad. Crying never helps,  of course,  and in fact usually only makes things worse, but sometimes it cannot be helped. 

So, on days like these,  you depend on your medication to save you. But there's a phenomenon that's little known outside the migraine world called gastropariesis that's says, No, your meds aren't going to work today.  Gastropariesis is basically paralysis of the gut and it happens once the migraine process is full blown.  Things just shut down, oral meds don't process. What goes down often comes back up.  This is why injectables are an important part of treating migraine. They bypass the stomach and go straight to the bloodstream.  Unfortunately,  I don't have any injectables right now. My meds are oral, so all day, I've been taking med after med, just hoping and praying one of them might eventually get through,  with no such luck.

Now finally,  it's late enough I can justify taking my night meds.   I have no idea if they'll work any better than any other med I've taken today. Being awake all day in this pain, waiting on relief that never comes,  has been excruciating.  I can only hope the night meds will be more successful and the peace of sleep will fall upon me soon.  Please,  as you read this, hope with me for relief and peace and much needed sleep. Thank you.

Tuesday, September 24, 2013

A new illness, and a perfect day.

So, it's been awhile since I've written and I feel the need for an update.  I believe the last time I wrote I was still in basic hell.  I was in bed about 22 hours a day.  Thankfully, that has ended.  My migraines have improved drastically with daily opiates and new preventives.  The choice to move to daily opiates was a big one.  It felt like giving up on standard treatment in a way, but then again, it didn't feel like there were many choices.  So in the end, it seems to be working.  My headaches are a low level everyday still, and they spike to true migraine still on a regular basis, but I cherish that low level headache time.  I consider that a big improvement.

In the meantime, however, about a month ago, I began having pain in my hands and feet on a daily basis.  I saw my primary care physician, and after some blood tests, we discovered that I have an autoimmune disorder and I was referred to a rheumatologist.  We don't know which disorder I have, because there are many different autoimmune disorders, but once I see the rheumatologist, she will narrow that down and give me a diagnosis and start treatment.  I can't wait for that.  I just want to be treated and feel normal again.  Since I have seen the PCP, the pain has spread to other parts of my body, so I have general body aches all over daily.  I am ready for that to stop.  When I have that pain and a migraine, it just adds insult to injury, you know?

So, anyway, I want to tell you about my perfect day yesterday.  It was so nice.  I woke up at 8 a.m. and felt good all the way to bedtime at 11 p.m.  That hasn't happened in SO long.  I just ran around, got some errands accomplished, shopped, visited friends, went to a Democratic Women's meeting, then out with friends--I did SO much and felt great through it all.  It was wonderful.  I can't remember the last time I felt so good.  My body aches weren't even that bad, and my head didn't bother me at all.  It's just almost impossible to explain the giddiness I felt last night over my great day.

I wish I could say today has been so great.  I am afraid today is back to real life, complete with a migraine, full body aches, and emotional swings....  I think yesterday was just a carrot representing the life I want to have, dangling in front of me just out of reach.  But surely I'll get there, right?  If it happens once, it surely can happen again.  At least that's what I am holding on to.

Thanks for reading.

Tuesday, July 9, 2013

Shout out to my Boo!

If you've read this blog often, you know I am smitten, intrigued by, and head-over-heels for my husband,C. C takes care of me so well, I can't imagine how he's not burned out and so tired all the time. But not my C.  He says he loves me and his most important job in the world is taking care of me.

A few things he does for me:  I get either Shipley Donuts or Chocolate Gravy every morning because he worries about how little I eat and the mornings are the one time of day I have an appetite.  He brings me whatever I ask for in bed--not because I physically can't get up and get it but because he knows it increases my pain to have to walk around.  He helps me reason through medication options when my brain is trashed from migraine pain and I can't think for myself, and on top of all this, every bit of house work has fallen on his shoulders for months now.  Again, I don't know how he does it, but C does, and still manages to love me in spite of it all. 

He also takes me to the ER in the middle of the night when I need to go, he sits with me in the dark when I have a migraine to keep me company, he brings me medications when it's time and I need them.…. There are very few things C doesn't or wouldn't do for me.  And I love him so for it. 

He tells me someday I'll get the chance to return the favor.  Though I want to return the favor, I don't want him to ever be as sick as I am now.  I know I don't control these things though, and with him being older than me especially, I likely will have to return the favor.  When or if that time comes, if I can be just half the spouse to him that he has been to me, and show him even half the love he's shown me, I'll be a pretty darn good caretaker. Because he's downright amazing.  

Monday, July 8, 2013

Talking about migraine without bumming everyone out

Migraine is a big part of my life. It's not ALL of my life, but I inevitably find myself talking about it wherever I go.  I try not to be a Debbie-Downer about it, but it's hard to feel like I don't bum everyone out when I talk about my struggles with migraine.  (BTW, where did the phrase Debbie-Downer come from?  I know three Debbie's and they are all gloriously positive people.) 

I especially feel like I bum other migraineurs out when I talk about my experiences with migraine.  I try to tell them "please don't judge your situation/expectations on my experiences, because I am an extremely hard to treat case," but I feel like that's not enough. When I hear of a migraineur who is worse than me or who has been chronic longer than me, my first thought is "oh no, will that be me someday?  Is that what I have to look forward to?"  I just can't help but compare our situations and put myself in her shoes.  

Then, I get bummed out about it.  It's hard to be positive when your sure your future is filled with more of the same bleakness and pain.  So if this happens to me, I know it probably happens to others when they hear my stories of migraine.  The getting bummed out and knowing your future will be filled with pain just like me. But I don't know how to honestly talk about myself, my life, without talking about migraine.  

I used to avoid talking about migraine as much as I could, for fear of looking weak or being misunderstood.  Now, I realize they are such a big part of my life I can't avoid talking about them and talking about them is a good thing.  It brings awareness to a problem that needs more awareness.  

So I guess all I'm saying is that it's a really difficult subject to put a positive spin on, so if I've ever been a bummer to you when discussing migraine, I certainly apologize. It's not my intent.  I do hope I've raised awareness of the issue without being a Debbie-Downer. (There's that phrase again…)  

And for all you Debbie's out there--stay positive!  

Friday, July 5, 2013

Just a little vent

So, I need to vent a little.  It's multiple things really.

The first thing I need to vent about is that I have been chronic now for 15 years.  That means having migraines on more days in a month than not.  I happen to think that's a LONG time.  Longer than anyone should have to live with chronic migraines and that surely my effective treatment method is just around the corner.  Then today I read a friend's blog, and she's been chronic for 20 years.  Twenty years.  So you can guess what that makes me think.  It's possible effective treatment for me isn't just right around the corner.  I could do this five more years.  Maybe longer.  My friend hasn't found effective treatment yet.  Can I do this five more years?  Am I strong enough?  It doesn't feel like it sometimes.

I also want to vent about how I am sleeping, or rather not sleeeping, lately.  I am trying trazodone to sleep instead of lunesta.  I am on a low dose of trazodone to start out and just moving up on the dosage slowly.  It's not working out very well.  I am just not sleeping unless I take something to supplement the trazodone, and then I only sleep for a few hours at a time.  You can imagine what this sleep deficit is doing to my migraines.  I have daily migraines anyway, but they happen earlier in the day and I get no break at all when I don't sleep well at night.

Last night was rough.  Not sleeping is rough.  I'm constantly worried about how much longer this can go on.  When I first started having migraines, I was terrified of the "next one".  They were so bad, and I always knew I would have another, and it terrified me.  Now, I'm not terrified of the next one.  The next one is a given.  It's going to happen and it's going to be awful and I'm somehow going to live through it anyway. Now, what I'm terrified of is how long they can last.  How many hours a single migraine can last, and how many years migraines in general will last.

I hate complaining about things, but some days, you just need to vent.  Today was really one of those days.

Thanks for reading.

Another Mostly Good Day

I had another mostly good day today.  It was because of Zomig, but still, I need to celebrate the good days, no matter what the cause.  I even was able to watch fireworks, which I thought would never happen again.  Sure, by the end of them I was hurting, but I enjoyed at least half the show.

The day didn't start well.  I have to judge carefully how I use the Zomig because I can only use two per day and they've only been lasting about four hours per pill.  Today was an important day, you see.  Not only was it the Fourth of July, but it was the day my husband and I had promised to take my now 10-year-old niece, E,  out for her annual birthday shopping trip and dinner.  We do this with each of her older brothers on their birthdays too.  It's our chance to spend some special time with each of them and hopefully let them know they are special to us.  

So we promised her we'd take her out today and take her to see fireworks tonight. Now, I was quite concerned about the fireworks watching.  Bright lights, flashing lights, loud noises, and migraines just don't go together.  But we promised E.  I didn't want to disappoint her.  So as I said the day started off bad.  I had my usual migraine in the morning, and knew I had to get ready to pick her up around 2:00 p.m.  So I took my Zomig around 1:30, having no idea if that was too late, if my migraine was too advanced to let my stomach metabolize the medication, or if it would work as it was supposed to.  Luckily, within about 20 minutes, I began feeling a little better.  In about 30 minutes, sure enough, I felt good enough to get out of bed and begin the process of getting ready.

So a few hours later, we were on our way.  We did a lot of shopping.  What can I say, the girl takes after her mom and her aunt.  She knows how to shop.  Then, she requested IHOP, because she likes their Mac and Cheese, of all things.  After that, I was onto my second Zomig, and we were off to the fireworks show.

We had to wait quite awhile for it to get dark and for the show to start.  I thankfully remembered to bring earplugs, so the sound of the fireworks wasn't too awfully bad.  I enjoyed the first part of the show, then all of a sudden, what had been the enjoyable lights of the fireworks seemed to brighten to an unbearable glow.  Just like that.  I asked my husband if the lights seemed brighter to him, because I thought it couldn't just be me, but of course, I knew better.   I knew my evil superpowers were returning and my vision was just sharpening as it does when a migraine is hitting.  So, I began the day and ended the day with a migraine.  Unfortunately, my day wasn't over yet.

We still had to drive an hour home, and E decided she wasn't done shopping.  Besides that, we needed to buy her something for breakfast and some snacks, so we had to run to Wal-mart.  Luckily, my head wasn't at full steam yet.  We make it home, and I begin the melt down.  The problem is, I'm trying a new night med, and it's not working well so I can't sleep.  So this blog is being written with a migraine, not a level 9 or 10 at least, at 1:30 a.m.

As I said, I need to celebrate mostly good days.  I just wish I didn't have to end them by talking about the migraine I go to bed with.  Someday....

Sunday, June 30, 2013

Migraine Awareness Month #30: A Letter to a Fellow Sufferer.

Today's prompt is from the movie 2001:  A Space Odyssey: "I am putting myself to the fullest possible use, which is all that I think that any conscious entity can ever hope to do."  We are to write a letter to a fictional Headache Disorders patient encouraging that person to be kind to him or herself.  Use the ways you're too hard on yourself as inspiration.  

At the outset, let me tell you, the reader, that I am proud of myself for making it this far.  Writing for 30 days, 30 days with migraines, is a pretty big accomplishment for me.  I wasn't sure what to expect when I started this journey.  I wasn't sure if I would succeed at this task or not, but I am proud I did.  Writing is cleansing and purifying for me.  It's good for me to write.  I need these prompts to help get the creative juices flowing, however.  So if there is a lag here for awhile, I apologize.  I will try not to ignore this blog and to keep writing as often as  I can, but it's difficult to just sit and write without a prompt.  I am not a creative writer, you see.  Oh well.  On to the prompt.  I just felt the need to wrap up the month with a little paragraph of pride and warning, letting you know what you may or may not expect in the future.

The prompt:

Dear friend:

I know you are suffering.  I know it's terrible and indescribable, and you feel as though it may never end.  I have been there.  I know it's easy to be really hard on yourself at times like this, to wonder what you did to deserve this.  I think everyone who has been in this position has wondered that at times.  Trust me, I don't think there is anything you could have done to bring this upon yourself.  You can't be good enough to make this go away or bad enough to bring this on.

Don't blame yourself when new treatments fail.  It's natural to be disappointed.  It's natural for people around you to be disappointed.  Let them be disappointed.  You can't do anything about that and you CAN'T take their disappointment upon yourself.   You didn't cause their disappointment.  You can't let yourself feel responsible for their disappointment.  Treatment failures happen.  You don't want them to happen anymore than anyone else does.  You aren't the cause of their disappointment.  Remember that.

You are strong.  You deal with more pain in a day than most people have to deal with in a year.  Do you realize most women say they'd rather go through childbirth again than have another migraine?  Yet we go through labor in our heads on a daily basis.  We are strong.  Even if you feel weak sometimes, you are stronger than you ever  imagined.  Grab hold of that strength and don't let go.  Say it over and over in your mind if you have to.  You are strong.

Sometimes you will have to miss out on things you want to do because of migraines.  And it will suck.  You might cry and be depressed and wonder why life is worth living.  You have people around you who love you and who you love, and who make your life worth living.  Migraines WILL steal some things from you.  I wish I could honestly tell you that they won't.  But I don't want to lie to you.  Migraines will rob you of joy  in your life.  But you can decide how much they can rob from you.  Don't let them rob you of your friendships, your family, and the love you have in your life.  Find a balance.  Take advantage of every good moment.  Even if it's just talking on the phone, keep up with your friends and those you love.  Don't block them out.  Find ways to let them in so they understand what you are going through, as best they can, and know you are trying to include them in your life.

Migraines make everything more difficult.  From careers, to family, to friendships, to just maintaining a home.  But with a support system, you can do it.  Love yourself, and be kind to yourself.  Know your limitations, and respect your limitations.  You will make it.  And there will be a large community of online support for you when you need it.

Best of luck to you, my friend.