I am off to see the neurologist (again) this week. I am not even sure what to say to her. I feel like someone who was dropped off in a country I don't know, with language I don't know and people I don't know who can't give me directions to places I don't know. I don't even know what I want to see her for. I guess so I can be referred to a surgeon so I can discuss a surgery that I am not even convinced I am ready for.
Some family members and I sat down this past weekend and discussed my options. I kept asking them, what would you do? What would anyone do in this bizarre turn of events. I just never expected to have to deal with something that I didn't even know existed! I am still in a state of shock. And having to think about it with no one else in the house every night. And having to deal with the children every night without a partner...well when the pain hits it is from hell. Straight from hell.
Have I described the pain yet? I just refer to the pain usually. My family members asked me to describe it. I tried to figure out what it feels like. Why it is called the "suicide disease." Why I am such despair when I am having an attack.
The only way I can describe the pain is this: There is a burning hot knife cutting into the gum behind my teeth where the top and bottom jaw meet. There are also what feels like hundreds of bees stinging my gums above and below my teeth. And then under my tongue there is a pinching sensation that comes and goes. Add to this every tooth in my mouth feeling like there is an exposed nerve so when I breathe or drink or talk, the teeth pound with pain. Sometimes these different pains are individually happening. Other times they all occur at the same time.
I guess the reason it is so terrifying as well as painful is because I don't know if the pain is ever going to stop. For some reason the meds have stopped working enough to allow the pain to come back, so what if the meds stop working all together. What if I have to live with this horrible pain? What if I never go back to my normal way of life? I can't go on like this. I can't live with this amount of pain. And that is why they (who?) call it the "suicide disease." I guess some people just couldn't wait for that next day to find out if there is another drug, another ice pack, another miracle.
My family asked me if I ever considered suicide because of this condition. I guess in a way I have. I know when I am having a long, horrible attack, I know that I couldn't possibly live knowing that there is no end to it. I just keep the faith that by morning or by the next day the pain will subside. That the drugs will kick in again. That the ice packs will provide relief.
And I keep the faith that upstairs from me are three kids whom I pray to God will never, ever have to deal with anything like this in their lives, and who I couldn't leave in this world without seeing them grow to be happy adults. I also have faith that my husband, wherever he may be, is coming home and we can fight this together.
I am wandering in a foreign land dealing with a foreign disease, but my kids and husband are my oasis. They are what provide me the reassurance that I will end up back where I should be, back where I belong -- pain free and happy again.
Some family members and I sat down this past weekend and discussed my options. I kept asking them, what would you do? What would anyone do in this bizarre turn of events. I just never expected to have to deal with something that I didn't even know existed! I am still in a state of shock. And having to think about it with no one else in the house every night. And having to deal with the children every night without a partner...well when the pain hits it is from hell. Straight from hell.
Have I described the pain yet? I just refer to the pain usually. My family members asked me to describe it. I tried to figure out what it feels like. Why it is called the "suicide disease." Why I am such despair when I am having an attack.
The only way I can describe the pain is this: There is a burning hot knife cutting into the gum behind my teeth where the top and bottom jaw meet. There are also what feels like hundreds of bees stinging my gums above and below my teeth. And then under my tongue there is a pinching sensation that comes and goes. Add to this every tooth in my mouth feeling like there is an exposed nerve so when I breathe or drink or talk, the teeth pound with pain. Sometimes these different pains are individually happening. Other times they all occur at the same time.
I guess the reason it is so terrifying as well as painful is because I don't know if the pain is ever going to stop. For some reason the meds have stopped working enough to allow the pain to come back, so what if the meds stop working all together. What if I have to live with this horrible pain? What if I never go back to my normal way of life? I can't go on like this. I can't live with this amount of pain. And that is why they (who?) call it the "suicide disease." I guess some people just couldn't wait for that next day to find out if there is another drug, another ice pack, another miracle.
My family asked me if I ever considered suicide because of this condition. I guess in a way I have. I know when I am having a long, horrible attack, I know that I couldn't possibly live knowing that there is no end to it. I just keep the faith that by morning or by the next day the pain will subside. That the drugs will kick in again. That the ice packs will provide relief.
And I keep the faith that upstairs from me are three kids whom I pray to God will never, ever have to deal with anything like this in their lives, and who I couldn't leave in this world without seeing them grow to be happy adults. I also have faith that my husband, wherever he may be, is coming home and we can fight this together.
I am wandering in a foreign land dealing with a foreign disease, but my kids and husband are my oasis. They are what provide me the reassurance that I will end up back where I should be, back where I belong -- pain free and happy again.
1 comment:
hey you. i saw your folks which was really nice. can't believe how little we all see of each other at this point in our lives. i sent a few little things for you with your mom... hope it brings a smile.
maybe a dumb question, but is this sort of thing brought on possibly by various types of stress? i'm a firm believer in disease resulting from dis-ease. we're all pulling for you, hope tomorrow brings you one step closer to healing.
xo
heather
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