Friday, June 29, 2012

Back Again for Chronic Migraine Awareness Day

Wienie Girl Wearing Purple and Red

June 29th has been designated as the day to heighten awareness of chronic migraines and the devastating effect they can have on the lives of those who have this condition.  The colors of the "ribbon" used for this are purple (for migraines) and red.  I am wearing purple and red to work tomorrow in solidarity with my friends who suffer from chronic and/or intractable migraines.

I have not been posting. I have neglected my web friends and my blog. I have been very sick, mostly due to increased pain and digestive issues.  I am trying to work full time, and have been lucky enough to work from home on days when I can't make it into the office.  However, I really need to work MORE than full time just to keep my head above water with the workload I have.  That is adding more stress since I hate to do anything without full and total commitment.  I hope I can someday start working more with this blog again.  It has always been a source of relaxation for me.

The Belly has been ruling my world since March.  I have passed kidney stones a couple of times since then, battled infections, battled gastroparesis, fought with neuropathy and increasing issues with nerve pain and dysfunction from the radiation therapy I received.  The Headache has woken up a couple of times since March, the latest being last week.  Sigh.  Wishing for an entire body transplant!!!

The Headache hit strong and hard about 10 days ago.  There was "dry thunder" going on.  I had worked a couple of really long days at the office because we had clients from out of town and I had been drafted to assist them on setting up their software.  I was heading home at 6 PM, and started vomiting.  The head pain when from a four to a ten in about 30 seconds.  I drove myself to the ER clear across town throwing up all over myself and my car.  ICK!!!

I was in such bad shape by the time I got to the ER desk I could not talk, just shake in pain.  I was able to croak out my name, and someone got a wheelchair to take me back for triage.  I was bad enough they kept me in the triage area until they had a room available.  I couldn't think, I couldn't talk, I couldn't walk.  All I could do was cry.  I forget what the pain was like before I had my occipital stimulator installed until I have a day like this.

They got me back in a room, and I remember thinking I really can't stand the pain.  I couldn't even get myself into a gown, which for some reason makes me feel full of shame, as if I was at fault someway.  I passed out from the GodAwful Pain and when I woke up I was extremely disoriented - maybe because of the pain, maybe because my blood pressure was in the 242/110 range. I was alone in the ER bay and had some problems really comprehending where I was at.  I remember getting out of the ER bed unstrapping a bunch of stuff and trying to figure out where I was.  This is not normal for me.

I finally found a call light and buzzed it but was still so disoriented they had a hard time getting me back in the ER bed.  I guess my eyes weren't responding well to light or anything else, but the pain was incredibly bad.  I don't know what I will do if my stimulator ever stops helping with the pain.  I am not courageous enough to face this on a daily basis again.

I had the letter my headache specialist had written for me last fall, for situations like this.  It helped but the pain was so bad the doctor didn't really take the time to read it very closely.  Benedryl, phenergan, solu-medrol, and at least three IV injections of dilaudid barely touched the pain.  But once it got down out of the ten range, I was able to start thinking again.  I finally told them no more meds, since the pain wasn't going to go down anymore.

I have had more than my share of experiences in emergency rooms the last few years.  I hear other people tell the nurses that on a scale of 1-10 they are at a 10.  I don't know if I am more of a wuss than those people but I am at total meltdown levels when I am at a 10.  Not saying these people don't feel dreadful pain when they say 10 but I can't physically make my body obey me at a 10.  I tremble and shake all over, and stutter badly when I try to talk.  I keep apologizing for causing so much trouble in words of one syllable kicked out between clenched teeth between groans and actual screams.  That's how bad it was - they closed the door to the room because I couldn't screaming and weeping the word PAIN when The Headache decided to see if I could take more than what I previously thought was a 10.  Terribly undignified.  Like peeing your pants in public undignified.  I lost any vestiges of control I thought I had over my body, my brain, and my reactions.

The medications finally helped a little bit, at least enough to get me off the ledge I felt was on.  The solu-medrol helped for the next few days, but now The Headache is swinging back up the pain ladder tonight.  I fear this total loss of control in front of the people I work with.  I hope to go to sleep soon and get to work again tomorrow.  Today has been a very tough day.

The Belly pain is bad tonight.  The solu-medrol helps The Headache and makes The Pancreas flare up.  I feel my life has become a struggle from one day to the next, with different systems of my body failing me and all of them hurting me.  I know there are persons out there in worse pain than I am and I truly am lucky to be here and functioning as well as I am. When I started this journey into chronic pain, I was not prepared for what it takes out of me.

I am tired of fighting to be more normal, I am tired of fighting to keep working, I am tired of being sick, I am tired of being such a whiner. I am being a wienie, and I don't want to be one.


  1. Winnie, it's good to read your voice. :)

    I can't imagine trying to balance health issues like yours (and mine) with full-time work. You aren't a wienie, you're a champion! Even champions come out of the ring bloody and beaten up sometimes. May you win the next fight, soundly.

  2. Oh Winny!!! So glad to see you're back but so sorry to hear you're in so much pain! Your strength is truly amazing; I don't know how you do it and still manage to be so thankful. You are an inspiration. I hope the pain lets up for you. Sending positive thoughts and prayers your way. xo Heather

  3. Chronic migraine awareness -- it's not funny, but it made me laugh. Some of us (you & me included!) are altogether too AWARE about chronic migraines. :/

    So sorry you've been worse than usual lately. It's so frustrating to have flare-ups when the day to day is already so difficult. Fingers crossed that your body will bounce back ASAP!

  4. Steph: Great to hear from you, I need to get back to reading my blogs again and see what's happening. Thanks for the words of encouragement. I can hear the bell ringing for the next round, and hope the fight doctor feels I can take another beating and not throw in the towel!!! Hoping your head is behaving itself a little better (hoping you are still in the mountains - that city was toxic!!)

    Heather: I don't feel very strong lately. So thanks for telling me that. You take care!!!

    Emily: I agree!!! We are WAAAAAAY too aware!! Hoping my bounce back ball is not flat. Otherwise I will have to go out to the local service station and air it back up, or the thud when I try to bounce will not be pleasant!! Ha!!

    Thanks everyone. I think I accidentally deleted a couple of comments last week when my head was not securely connected too my brain, so whoever commented then, I am soooo sorry, just not at my best lately. I always appreciate any comments and read all of them. I just oobooed big time with my big distracted head.

  5. I'm so, so, so glad to see an update from you!

    I'm sorry to hear your pain has been so bad, though. Sending good thoughts.

  6. Ditto what everyone else has said! You're truly and inspiration and I hope you remember that, even when you're not feeling strong. It's nice to see someone be real about their pain and still manage to have a sense of humor. Thank you for coming back and writing this post. Don't feel guilty if you can't continue blogging as much, we all understand! :)

  7. Oh Winny, I'm so sorry that you are having such a bad time. Glad to hear from you though!

  8. Hey girl! I've been a bad blogger friend lately. The big old dump truck backed up to my door and still keeps dumping. I was laid off April 4 due to lack of work (I think it was a pity layoff since I was having trouble keeping up even working part time.) I finally bit the bullet and filed for Disability. So far I have seen 1 psychologist and from typing the transcriptions for years I knew every question he asked me and why he asked it. I sailed with flying colors as a normal person. I guess so since I'm loaded with Prozac and Remeron and clonazepam. But I know without a doubt they will reject me the first time because it's the American way and then I will turn it over to a company that specializes in fighting for disability. I pray for you nightly. Take care. Love ya.

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  10. Somehow I posted Ness's comment 2x??? NOt sure how I did this magic but my head is not working right!!!

    So glad to hear from Diana Lee, Sue, and Heather!!!

    Ness: So sorry about the working thing. I know how hard you were trying to keep it going. I have not doubt about the reject the first time myself; one reason I have not bit the bullet and applied either. sigh. How did this become the American way? To put barriers in the way so the sick and disabled are discouraged from applying for benefits. Glad that that the chemical mess we all take put you on "normal" street!!! However,a close relative at 56 yo got disability on the first try. so you never know!!! Good luck Ness

    Good luck and painless dreams to all my blogging friends!!!