Er my gerd…

So I took a leave of absence to manage my wildly slipping health right?  Well, I thought I would be resting while this happened. Maybe visit a doctor once a week and manage medications while making myself eat and exercise while I adjust to them.

HECK NO!

I have been to see one to two different doctors a day all week! Cardiologists, Neurologists, more Neurologists.  When I am not seeing doctors I am on the phone long distance with doctors I am paying plane fare to go see in March or I am filling out medical forms, calling the insurance company, and talking with medical receptionists scheduling the next round of doctor’s visits.

EEK!

It’s so confounding I bought a binder, with separate pocket folders, to organize what paperwork is coming from whom, so I can bring it all with me wherever I go.  Head-slam-desk. Before you know it I will be putting multi-colored tabs on the different receipts to file with my accountant.

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My Rock.

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We are in the quiet, dim confines of my doctor’s office. He is here, by my side, once again. To make sure I am OK. To make sure I feel supported. To help me feel loved and safe and brave.

He is my rock. He keeps me hoping. He holds me up when I want to collapse. He makes me laugh when I want to despair.

He is wonderful.

update

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A lovely visit to the cardiologist. Together. Do we know how to have a good time or what?!

The collapsing star…

Hatchet told me I am a collapsing star.  When I feel well I expand out into the universe, reaching out to everyone in my life and pulling them to me with energy and excitement, questions and concern.

When I am hurting and scared I pull inward, hide inside myself.  I don’t reach out to anyone, and I find myself lonely and afraid in a dark pool of my own making.

When I am hurting, I don’t want to reach out and ask for help. I know I can’t expect my friends and loved ones to know I am hurting. They have lives going on, things that demand their attention with the loud energetic voices used by stars who aren’t collapsing in upon themselves. They are also likely quiet tired of me being in this state. It has been years since I could answer the question “How are you?” with “I am great.”

My voice has grown quiet. Literally. It actually hurts for me to speak up. I noticed this last night at coffee as I tried to join in the conversation of my friends. I lack the ability to do so. My voice cannot be made loud enough to break into the bustle of lively conversation without causing me significant discomfort. That realization has driven me deeper within myself today. Even when I am included, even when they reach out, I am isolated.

Today I am in my sanctuary. As Dan is still mid process of moving in things are scattered about and it is not the calm cave of peace it normally it. However, it is mine, it is whole, it is quiet. It has my cat and the dog. There is warmth and subtle light.

I have set my healing schedule. I will walk once a day, long walks. Far distances with or without people and pets. I will walk to improve my health. I will study and read to improve my mind. I will wait for the medication to improve my head. I will make all my doctor’s appointments. Cardiologists, Neurologists, Anesthesiologists, etc. I will call the clinics and insurance people. I will keep up with my laundry and chores. I will cook and eat healthy meals.

When my children are home I will read with them or play games with them. I will spend time each day focused on each of them. I will carve that out.

I will save the dark hours of the night for despair. The hours when the pain wakes me up or prevents me from sleeping. The hours when I become certain my life will not improve beyond these small accomplishments. Despair best suits the night time. The darkness helps it settle into your bones. The morning always brings with it a little hope and a renewed dedication of purpose.

As scared as I am to attend this pain clinic, I hope it gives me back my voice. I hope I come home with the tools I need to manage this lifelong disability so I can stop being a collapsing star and once again reach out to the people I love with excitement, exuberance, and joy.

This one time, in pain camp…

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.

Virtual Coffee

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:

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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!