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.