Pain Journal Entry Back Logged
Josh says that I have to start writing about this disease I have otherwise I'm going to kill someone, so I did, and I'm going to put it in here. Originally I wrote it in my pain journal, a journal that sounds exactly as it is, I keep daily track on a scale of 1-10 (1 being tolerable and 10 being pain beyond anything I can imagine) and whether it is so bad I can't eat or sleep or talk or see or do anything, but I've started using it as an outlet. And now that I've begun this new live journal I'm going to share some of what I go through with those who care about me so that they understand why sometime I just can't.
So, here goes.
May 14th, 2005
I've been putting my journal, both live and hand written to the side, refusing to let even that have the honesty of what I'm going through. See, if I could just keep sounding up beat and optimistic then maybe no one else would see my life crashing down. Well, time to fess up. I'm scared.
I've been to the emergency room 6X since March 17th and been admitted every one of those times. I HATE hospitals! They smell. And even with the doctors I've smiled through the pain and brushed it off. It's only when my mom cries for me that I lose control and the tears slip and then I can't stop for 3 days straight. I finally had to ask her to just stop, because I couldn't crumble.
So, I say, no biggie, even when it is a big deal and shrug when I feel myself beginning to tremble. I smile wider when I feel the grimace of agony coming through. I've been diagnosed with Pseudotumor Cerebri. Not a rare condition. What makes me rare? 98.7% of all patients are over 275-300lbs. My weight doesn't even begin to compare. Weight loss is the main treatment. The condition is this: my brain is swelling w/ water and there are only two places it can push it: 1) out through my eyes which puts pressure on my optical nerve causing the photo sensitivity (lights become so bright that it actually blinds me and I've taken to wearing sunglasses 24hrs a day). 2) down my spinal chord. They first measured the pressure at 27 (a normal level is between 8 and 18). But you'll remember me telling you that weight loss is the first treatment. Well, because I'm in too much pain to eat I've lost an additional 27 lbs. As well as being on the meds for it. Yet two weeks ago when I went in, they did another spinal tap it measured a 31. So, what's wrong with me?
Sometimes I'll go 3 or 4 days without eating anything, barely drinking because just breathing makes my head jump the meter mark. They ask me what my pain level is and it's been at a 10 for months now. Sleep alludes. First because of the agony. Second because I have these horrid nightmares and fears because all the stress is pushing out. Third because the medications I'm on make my legs ache like they're going to snap in half. It's in the bones. The spinal taps make me sick. The meds make me sick. I hate it all. But I'm slowly getting used to them. Even the pain.
So, here goes.
May 14th, 2005
I've been putting my journal, both live and hand written to the side, refusing to let even that have the honesty of what I'm going through. See, if I could just keep sounding up beat and optimistic then maybe no one else would see my life crashing down. Well, time to fess up. I'm scared.
I've been to the emergency room 6X since March 17th and been admitted every one of those times. I HATE hospitals! They smell. And even with the doctors I've smiled through the pain and brushed it off. It's only when my mom cries for me that I lose control and the tears slip and then I can't stop for 3 days straight. I finally had to ask her to just stop, because I couldn't crumble.
So, I say, no biggie, even when it is a big deal and shrug when I feel myself beginning to tremble. I smile wider when I feel the grimace of agony coming through. I've been diagnosed with Pseudotumor Cerebri. Not a rare condition. What makes me rare? 98.7% of all patients are over 275-300lbs. My weight doesn't even begin to compare. Weight loss is the main treatment. The condition is this: my brain is swelling w/ water and there are only two places it can push it: 1) out through my eyes which puts pressure on my optical nerve causing the photo sensitivity (lights become so bright that it actually blinds me and I've taken to wearing sunglasses 24hrs a day). 2) down my spinal chord. They first measured the pressure at 27 (a normal level is between 8 and 18). But you'll remember me telling you that weight loss is the first treatment. Well, because I'm in too much pain to eat I've lost an additional 27 lbs. As well as being on the meds for it. Yet two weeks ago when I went in, they did another spinal tap it measured a 31. So, what's wrong with me?
Sometimes I'll go 3 or 4 days without eating anything, barely drinking because just breathing makes my head jump the meter mark. They ask me what my pain level is and it's been at a 10 for months now. Sleep alludes. First because of the agony. Second because I have these horrid nightmares and fears because all the stress is pushing out. Third because the medications I'm on make my legs ache like they're going to snap in half. It's in the bones. The spinal taps make me sick. The meds make me sick. I hate it all. But I'm slowly getting used to them. Even the pain.