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I have just written an update on my health situation (see this post for background info) twice now, and both times I lost the post. It is now 11:23 AM and I started about an hour ago. I'm sitting here in pain and I just want to get this update done. The first post was a rather lengthy and detailed update on my situation. Pages and pages of words. The second post was bullet points that were pretty detailed, but still, bullet points. I was frustrated and did not want to retype the first post all over again. And then I lost the second post. So now, I'm writing this on Wordpad. And it is not going to be very detailed and it'll probably come off as frustrated and a bit short and angry. I'm sorry about that.

* First, thank you all so much. I wrote that post just to inform a few friends about my situation so they'd know why I haven't been participating recently and why I've had problems returning emails. Then I got 800 tips on the tip jar and 400 comments, nothing but total support and empathy for my situation. I wasn't expecting that - I mean  I know this community is great, you all helped me before to get a computer so I can continue blogging (and I'll never stop being grateful for this - writing and music are the two things keeping me sane and all my music is on my computer. I wouldn't have it without this place) - I just didn't expect the numbers to be so damn high. There's 1,300 people in the town where I live. So, it's pretty much comparable to almost my entire town caring about what I'm going through.

* I have surgery on December 2nd to remove kidney stones and the bladder stent. This is nothing I'm worried about at all - it's outpatient surgery and there's not even any cutting involved. And there's even a (very, very small) chance this surgery itself could eliminate my pain. Before doctors thought it could be spinal/nerve-related pain, they suggested referred pain from my kidney stones. (Stones are on the right side, pain is on the left side.) If it's referred pain, I could be back to normal on December 2nd. I am not counting on this but it's always a possibility.

* I have an appointment with a neurosurgeon on December 8th. It is not the surgeon who paralyzed me. I've seen this doctor before. He's brilliant, but kind of a dick. Though I'd rather have a great doctor who's an ass than a crappy doctor who's nice to me while I die at  27 years old.

* I've spoken with mom and she's willing to find a great specialist even if it takes a cross-country trip. I'm looking into doctors/hospitals with a great reputation, and would appreciate any help or advice or names I could follow-up on.

* I am going to find out about a patient advocate and a pain specialist, as a lot of you suggested. I feel like at this point I need both of them. Given my history with the hospital's attempts to paint me as a drug-seeker, I'm incredibly anxious about even being there and asking for pain medicine. I think that if I find the right patient advocate and pain specialist, I will have the means to make sure I get pain relief when I'm hurting bad. And with a pain specialist, I may even be able to find the right therapies that don't even involve narcotics. I worry about possible addiction in the future (though I've never been addicted to anything, and I even used to smoke all the time, and was able to just quit one day with no problems.)

* I'll probably be contacting a few of you about some of your suggestions, and I've already received a whole lot of emails and kosmails from many of you, which is really cool.

* As for an update on my health/pain specifically, it's complicated. I'm still adjusting to being at home on oral meds as opposed to being in a hospital on IV meds. I think I liked the IV pain meds more. It feels like they worked better, even though my nurses told me that the oral ones are more potent and last longer. From what I'm feeling, that doesn't seem to be the case with me. Last night was the first bad night I've had since I've been back. I've generally been able to  sleep at night. It hasn't been particularly great, but I've been getting some sleep. Last night, not so much. I was hurting all night. It was nonstop and I didn't know what to do. About two hours after I took my oral pain med, I was hurting so much that I had to supplement it with another oral pain med (they did this at the hospital, so I know it wasn't an overdose or whatever.) It kept hurting. And yet today when I took my meds, I got pain relief. I can't explain it.

* I'm almost done with my apartment recertification stuff and my food stamps stuff. It is taking a lot longer to finish because I'm a bit hazy and sorting out this paperwork is confusing. However, the food stamps office sent me a letter in the mail yesterday that has a checklist of the things I need to send them, so that has helped. I can just go down the list rather than trying to sort everything out by memory. I only have a few more days to get all of this done, and I've been especially worried about my apartment recertification. They've been wanting me out of here for months now and have been making life fairly difficult for me, so the fact that I've been hospitalized half of this month and unable to get this stuff done until the very last second scares me a bit. They seem  to be supportive of me at the moment, telling me they understand about my hospitalizations, but they often say good things to my face and then I'll get letters about negative things related to my apartment.

* I'm way too hazy and confused, while I'm in the process of adjusting to all of this, to ask important questions and think critically and function normally. Just writing this is taking forever. So I'll have more questions/ideas in the future. In the meantime I appreciate the help and I appreciate all of you so much. I love you all.

* Most importantly, I'm feeling better, in terms of my mental health and general outlook. And it's all your fault. I was so scared and felt so isolated and alone and I guess you all helped me see I'm not alone. I already owe everyone so much and yet you continue to provide unflinching support for me. I'll always be grateful.

* I'm about to post this now before I stop making sense - if I'm even still making sense at this point.

NOTE: Since this is just a general update, and I'm not really clear-headed enough at the moment to get specific information, I've asked my friend Richard Lyon to write a more specific post about surgical care and pain issues. Watch out for that one, especially if you've got information you think would be helpful for me. When I'm feeling a bit better I can go through everything in his post.

Originally posted to indiemcemopants on Wed Nov 23, 2011 at 10:18 AM PST.

Also republished by KosAbility.

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