Monthly Archives: February 2015

and one Hell of a growth experience., Just me

This one time, in pain camp…

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I took a leave of absence from work.  The pain is so unpredictable and uncontrolled that I can’t manage a consistent work schedule.  My office, being amazing, has promised to save my position for me and has given me the time I need to get better. I met with SuperDoc this week and she decided things have gotten serious enough to refer me to Pain Camp.

Okay, it’s actually an in-patient hospitalization in Michigan where they monitor you 24/7 and use IV injection medication to find the correct mix of chemicals you need to manage your disability. Because that is officially what I have, a disabling condition that when unmanaged takes over my life.

I can’t drive, eat, sleep, or work.  I need help from my family and Dan in getting the children to and from school.  I can grocery shop because it’s within walking distance.  I can cook because sandwiches are easy. I am in crisis. This is it. My daily pain level runs between a 7 and a 10. So it’s time to get aggressive.

I have chemically caused chronic migraine and trigeminal nueralgia.  The left side of my body from the lower jaw to my temple has a tendency to shoot unexpected pain through me at random intervals. This pain can last 30 seconds to five or ten minutes. It is blinding and awful. It causes flashes of light that blind me. Mostly it renders me useless. The migraine sits in the background and makes sound and light irritating and difficult to handle. Most days it behaves.

I don’t know why but in the last three months the intensity of my condition has worsened appreciably. I have gone from manageable to completely broken down. I have had to call an ambulance to pick me up at work, I have has to miss work and social events, I have been in bed a lot. It’s time to go nuclear.

Monday I start the admissions process. Hopefully my insurance pays for most or all of it. It’s about $40,000 if they don’t. I am worried about managing if they do not. It can take months to find the solution without inpatient treatment. The hope with inpatient hospitalization is that doctors can use IV medication to instantly judge effectiveness and side effects, thereby allowing a quick determination of what mix of chemicals will correct what is wrong with my brain. Left to do it out patient, I will have to try one medication at a time, in pill form, wait for side effects, try another, etc. The last medication I tried caused vasospasms, resulting in two ER visits with chest pains and a host of anxiety filled days for everyone.

It has been suggested that I do a GoFundMe or something if the insurance won’t cover it, but I don’t have the energy to run one. If it turns out it’s not covered, and any of you want to run a fundraiser to get me into the pain camp, I will be eternally grateful. I will also be in my cave curled up under a quilt whimpering. I can send live feed images of feral quilt cave me to push the campaign along.

Please be patient with me my friends. I am trying to come back to myself and then, to you. I am not ignoring you, but I don’t have the ability to reach out right now. Please reach out to me.

Just me, Virtual Coffee

Virtual Coffee

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I came across this meme on Lucky Number 13’s blog and I really like the idea, so please join me in a cup of:

Owl

My coffee this morning is hot and black.  I finally have a settled enough stomach to enjoy it the way I prefer it so the creamer is once again left on the shelf.

If we were having coffee today I would tell you I am scared.  I would tell you I am starting to worry about never getting better and wondering what I will do to provide for my family if I can’t work consistently.

While we sipped our steaming drinks and nibbled on something delicious I would share my happiness at my relationship.  My giddiness at having someone in my life who tries every day to make me laugh.  I would share stories of his silly antics in the ER and the way his voice changes for each character when he reads to me. I would tell you we are excited he is moving in, and that we are setting up a weekly meeting to handle any trepidation we might feel.

If we were having coffee today I would talk about how proud I am of my daughter.  I would tell you she is amazing and strong.  I would explain how brave she at school each day and I would brag about the computer game she programmed in creative engineering last week. I would also tell you that she spends as much time as humanly possible with earplugs in her head listening to music shut off from reality. Cause, teens.

I would tell you about my son.  About how cuddly he still is and about how happy I am to find him curled up in a quiet corner reading books when I least expect it.  I would tell you we are trying to work on his writing by exchanging letters and that he is worried about Penny eating his stuffies when she moves in.  I would tell you he agonizes between the seemingly Herculean task of saving up for his longed for WiiU and purchasing yet another set of stuffies.  He has an addiction.  Our house is full to the brim with plush representations of Iron Man, Mario and Luigi, Pikachu, you name it.

I would tell you about my work and how wonderful they have been in supporting me through this.  I would tell you about the people I share my day with and about how much I miss them.  How much I hope I can get better and get back to the office so I can joke around with them and create again.

Well, my coffee is empty and my head is tired.  I hope you are having a fabulous day! Leave me a comment about your coffee conversation!

Chronic pain, Do not taunt happy fun ball, Migraine, Mygraine

Not the ride I was looking for…

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The day began as they often do, with a migraine and a moan.  Today I grabbed my D.H.E. injection and headed downstairs to shoot away the pain and get started with my morning so I could walk into work and enjoy the sunshine.

By 11:30 it became clear walking wasn’t going to happen.  The headache was gone but I was feeling weak and shaky from the shot.  Still, headache gone, time to go to work.  Dad dropped me off at noon and I said hello to the office for the first time in several days.

Then about half an hour later I began to experience chest pains.

Not again, I thought.

You see last week I missed work because I spent Monday in the E.R. with chest pains which started 12 hours after taking my D.H.E.

Calmly I wrote down the time they started and when I took the medication and began trying to work again.  Then I began to feel a sensation of pain move down my left arm and into my hand, and my arm went numb.  I marked the time and the sensation and called my doctor.  No answer.  I went back to work.  About fifteen minutes later I started feeling hot and clammy and my hands began to perspire.  Shit.  I called my doctor, marked the time, made notes.  No answer.  I went back to work.  A bit later I began to feel nauseated.  I called my mother.

Which is how I ended up in the back of an ambulance on my way to the ER for the second time in one week.  My mother wisely suggested, and then ordered me to call 911 for an ambulance.  I called and they were there fast.  I was impressed.  I barely had time to alert my co-workers to the fact that I would be leaving for the day, much less that four paramedics and two EMT’s were about to swarm the building and cart me off on a gurney.

I was rather embarrassed, honestly.  I prefer my illness to be more private than that.

Once in the ambulance I got aspirin and Nitro, and off we went to St. Joe’s for the tender mercies of the day staff.  They were wonderful.  They took every possible test and precaution and sent me home with the admonishment to never again take D.H.E.

Apparently it caused vascular spasms in me, resulting in decreased blood flow to my heart that was painful, but not damaging in the same way a heart attack was.  However, there were clear that there was no good to be had in continuing to take it.  I have to agree as the triponin test I took last week at the E.R. was 0.00 and this week’s was 0.015, it seems there is a slight increase in enzymes associated with heart attack.  I want to stop this ride while my numbers are in the “still negative” for heart attack range instead of waiting to see if I can raise them any further.

So tonight it’s cookies, tea, and sleep.  And OK, a little weep.  After years of not finding a solution to my migraines I am upset that the one drug that seemed the most promising tried to kill me in other ways.  I was so hopeful for this one.  (Damn homicidal medications!)