• Posted by Cathy
  • 07 Feb 2009

A week ago this past Wednesday I had a severe flare up. I thought I was done with those. I spent 3 days in bed, and called the nurse practitioner asking to increase my meds. I heard nothing the first day. I ended up calling after hours for my doctor and he told me to take extra methadone and go see him the next day. So I went to see him, and he prescribed me some lidoderm patches (just a heads up, any time you get patches for pain, you need preapproval from your insurance company), and he also prescribed me some Valium, and gave me a shot of toradol in the office (the nurse hit a blood vessel and lets just say there was a HUGE mess on the floor!). Last Monday I went to the Palliative Care Center in Strong. The doctor was amazing, he listened and just was really awesome. I was in there for an hour and a half. He had already read all my files (which is really amazing) and then wanted to hear what has been happening from me. He told me when he was reading the files it broke his heart and then to see me sitting there in front of him was really hard knowing how much I have gone through.  We talked about a lot of different options. He started me on Aleeve since the toradol had worked for me for like 2 hours, and he wants me on something stronger then hydrocodone. He started me on oxycodone with no Tylenol in it, so I can take it more often then every 4 hours (so my liver doesn’t go along with everything else in my body). So I have started those meds, I still take the Valium, and put the lidoderm patches on at night. It does make a big difference with the patches. I haven’t really started feeling a difference with the meds, I am taking 8 a day (my Max daily dose), so we’ll see what happens once it starts building up in my system, today is only my 2nd full day on the new stuff. Other options we talked about were putting some sort of nerve block type thing in me that will release medication at certain intervals. We discussed  acupuncture, which I am for. There is a great center in Canandaigua however, with my car being broke down, I shouldn’t be driving in the first place, and it’s quite a ways away, he’s going to look into other options. I’m going to keep my mind open about this one, and see where it takes me. The last option we talked about was removing my bladder. But he has spoken to my urologist since my appointment and he’s not too keen on the idea. I would like to have it taken out. I know just like every other treatment out there it has a 50% chance of working, but I’m afraid if I do get straightened out and I do reconnect it will come back. I can’t do this again. It’s hard enough the first time around and to think it might come back is even more scary! So I think I’m going to talk to my urologist about this, and see where we end up. So looks like I might have a couple more surgeries and some different types of treatment. Hopefully something will work! I am still spending the majority of my time in bed because it is the most comfortable place for me right now. Fortunately I have been approved for disability (and on my first try!!!)!! So I went and purchased a lap top with my retro pay, so I am able to keep up to date with things more easily now.

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