Every fear, every disappointment, every angry thought... They get heaped on my heart one after another until I'm staggering under their weight. Until recently I think there was still an element of disbelief. This couldn't be happening to ME. Not me. This is someone else's life, not mine. Through all the tests, diagnoses, misdiagnoses, arguments, concessions... I was determined to grit my teeth and get back to living my REAL life as soon as possible.
The thing that brought me to my knees was the internet bill.
Phil casually mentioned the internet was going to be shut off for lack of payment. It threw me off guard: what do you mean, lack of payment? Why don't you pay it? That would keep it from being shut off, right? It didn't sink in that what he meant was we couldn't afford to pay it. We can't pay for my prescriptions, mortgage, utilities, food and gas, let alone doctor's bills... And his decision was to let the internet go and get caught up with his next pay check.
No. I couldn't accept it, fought the implications. We are not the family who has to choose between medicine and food, doctors bills or phone service. That happens to poor people, old people. We both have good jobs with decent medical insurance! How on earth could my hard-working family have to choose which services get shut off because we can't afford to pay them? This isn't right!
I have noticed I'm withdrawing more and more from everyone, everything. Stopped reaching out to support systems. Stopped painting. Stopped leaving the bedroom for long periods of time. Phil asked if I was depressed. My response was, "Are you crazy? Of course not!"
Now I'm resigned. Everything is out of my control. I keep asking Phil if things will ever get better. He says they will, we just have to keep going.
How long? Someone said to me, "At least it's only been four months, not four years."
That's the problem. I don't know if it will be a few more months, or a few years, or a few decades... Or if I'll never get better.
It's no wonder I'm depressed.
Monday, October 15, 2012
Wednesday, October 10, 2012
...or not.
So. News. Per the radiology report:
My herniation (listed this time as 6 mm when previously 5 mm - chalking that up to human error) is more consistent with cerebellar tonsillar ectopia than with Chiari. According to what I've read though, the only difference is the ectopia is smaller and asymptomatic, while Chiari is larger and sometimes symptomatic. I guess I don't understand the difference.
Very mild disc degeneration that has nothing to do with anything.
The study showed no abnormal CSF flow BUT my posterior CSF space is visibly narrowed and there is an isolated "foci" (hah, big words) of hyperintensity in my left side brain. According to the report this could be from migraines (possibly), diabetes (don't have it), hypertension (not sure if they're talking blood or brain, but I don't have high blood pressure), or vasculitis (not a clue).
They also noticed my thyroid gland was odd: "parenchymal volume loss" is the term they used. Hashimoto's came to mind but I haven't researched it enough to know if that's a possibility for me.
Back to square one. Again. There is *something* neurological going on, but my PCP is just as clueless as I am now. She doesn't think it's something surgical, I can drop Dr. Hahn (hooray!). Multiple Sclerosis was suggested but I refuse to let myself think about it. Next step: call neurologist and make another appointment to be poked, prodded, and squinted at once more. Square one. I hate square one.
My herniation (listed this time as 6 mm when previously 5 mm - chalking that up to human error) is more consistent with cerebellar tonsillar ectopia than with Chiari. According to what I've read though, the only difference is the ectopia is smaller and asymptomatic, while Chiari is larger and sometimes symptomatic. I guess I don't understand the difference.
Very mild disc degeneration that has nothing to do with anything.
The study showed no abnormal CSF flow BUT my posterior CSF space is visibly narrowed and there is an isolated "foci" (hah, big words) of hyperintensity in my left side brain. According to the report this could be from migraines (possibly), diabetes (don't have it), hypertension (not sure if they're talking blood or brain, but I don't have high blood pressure), or vasculitis (not a clue).
They also noticed my thyroid gland was odd: "parenchymal volume loss" is the term they used. Hashimoto's came to mind but I haven't researched it enough to know if that's a possibility for me.
Back to square one. Again. There is *something* neurological going on, but my PCP is just as clueless as I am now. She doesn't think it's something surgical, I can drop Dr. Hahn (hooray!). Multiple Sclerosis was suggested but I refuse to let myself think about it. Next step: call neurologist and make another appointment to be poked, prodded, and squinted at once more. Square one. I hate square one.
Sunday, October 7, 2012
Some answers?
Tomorrow morning I have an appointment to find out what the results of my spinal fluid flow MRI was. Thinking about it leaves me breathless: what if they find something abnormal? What if they don't?
If my spinal fluid flow is blocked, it likely means I'll be heading to surgery soon. Brain surgery. If there's not a blockage, we are back to square one. All of my symptoms appeared mysteriously out of nowhere, with no explanation, and no way to resolve them.
The past week has been stressful. Personal issues, relationship issues, living space issues, not to mention my mystery symptoms worsening. A couple of days ago my left foot stopped moving. Just stopped, for no reason. I could feel my foot - it wasn't "asleep." There were no pins and needles. My foot felt a little cold, but that was it. I tried to move my muscles and they simply did not respond. It lasted about five minutes, but it felt like an eternity. I lifted my leg to the couch and gently rotated my foot and pushed on my toes. Ever so slowly, my foot remembered how to work. My toes still have trouble wiggling but at least it's not permanently paralyzed. I'm so, so afraid that it's going to happen again but next time it'll be my whole leg. Then my body. Then my respiratory system... Sleep comes hard when you're afraid you'll quit breathing and never wake up.
Today my perception of temperature wigged out. I felt like I was burning up, then suddenly felt I was taking an ice bath. The thermometer read a constant 96.0 degrees. I felt dizzy, my head was pounding, my heart was pounding... Not a great day, all in all.
I just want answers. That's all. Some hope that this isn't permanent. Some day I will feel like a normal person again. Where I can go grocery shopping without my back feeling like it's on fire after a few minutes. Days when I can go a full day without a headache, or napping because the pain is too overwhelming to stay conscious one more minute.
Hopefully tomorrow there will be answers... I don't know if I have the energy to hope much longer.
If my spinal fluid flow is blocked, it likely means I'll be heading to surgery soon. Brain surgery. If there's not a blockage, we are back to square one. All of my symptoms appeared mysteriously out of nowhere, with no explanation, and no way to resolve them.
The past week has been stressful. Personal issues, relationship issues, living space issues, not to mention my mystery symptoms worsening. A couple of days ago my left foot stopped moving. Just stopped, for no reason. I could feel my foot - it wasn't "asleep." There were no pins and needles. My foot felt a little cold, but that was it. I tried to move my muscles and they simply did not respond. It lasted about five minutes, but it felt like an eternity. I lifted my leg to the couch and gently rotated my foot and pushed on my toes. Ever so slowly, my foot remembered how to work. My toes still have trouble wiggling but at least it's not permanently paralyzed. I'm so, so afraid that it's going to happen again but next time it'll be my whole leg. Then my body. Then my respiratory system... Sleep comes hard when you're afraid you'll quit breathing and never wake up.
Today my perception of temperature wigged out. I felt like I was burning up, then suddenly felt I was taking an ice bath. The thermometer read a constant 96.0 degrees. I felt dizzy, my head was pounding, my heart was pounding... Not a great day, all in all.
I just want answers. That's all. Some hope that this isn't permanent. Some day I will feel like a normal person again. Where I can go grocery shopping without my back feeling like it's on fire after a few minutes. Days when I can go a full day without a headache, or napping because the pain is too overwhelming to stay conscious one more minute.
Hopefully tomorrow there will be answers... I don't know if I have the energy to hope much longer.
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