Prologue: Thank you one and all for taking the time to listen to my rants
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The rest of my life.
I swallow 27 pills a day just to make it through yet that is the hardest one to swallow. I’d like to think that I’m only halfway through my journey and it sucks to think that this illness will, in some way, control the remainder. I try to make light as much as I can by cracking jokes about it, naming it or finding humorous aspects of it at least. But when you strip it all down to its core, I’m scared and angry.
I’d like to think I have the patience of Job but when it comes to this, my temper shows up in earnest. Most of you don’t see it and that is on purpose. This is my battle, my struggle and I don’t think you all should be exposed to every aspect of it. Maybe that is selfish of me. To a person, you all have been amazingly supportive and helpful. I don’t think I would have made this far with my sanity as in tact as it is, without all of you. But frankly there are some aspects that I keep to myself. When it boils right down to it, it’s a war that I have to fight and deal with. And it sucks. Majorly. More than anything I’ve ever dealt with and I have dealt with a lot.
There are times when I breakdown, I cry, I scream, I pound my fists. I want it all to just stop. I wonder why me. It’s not pretty when I do and very few of you have actually seen it happen. I keep that to myself. I know you all would be there for me if it did happen around you and would do what you can to make it easier and for that I am eternally appreciative. But I still feel like I am burdening people when I do.
I am horrible at asking for help, I am a horrible, stubborn patient. Just ask Melissa. There have been 2, possibly 3, separate instances where I probably should’ve gone to the hospital. She thought so, my doctor concurred after the fact but I just didn’t want to. I thought it would pass and I’d be okay eventually. It did and I was. In retrospect I should’ve. Why suffer when I don’t have to. In the future I will. But I hope there will be no future of needing to.
I go to the doctor at least once a month just to check in. There really isn’t much she can do for me though. Here is a typical appointment:
Dr: How have things been over the past month?
Me: Some days good, some days bad.
Dr: Is it more good than bad or more bad than good?
(Insert which side of the spectrum it falls on)
Dr: Well, we have the same options to manage the pain, higher of this or this or more of this or this
Me: Let's do this and this and see what works.
(writes prescription)
Lather, rinse, repeat. She has told me that the visits are not a waste of time. I know she feels as helpless as I am frustrated but there really isn’t much more that can be done. Her primary role is to help make the pain manageable and give me the chance to get as much out of life as I can.
The rest of my life. I am slowly working on accepting that fact.
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