• Posted by Cathy
  • 23 Feb 2009

I apologize for not keeping up with the page lately. With IC you will notice that the pain seems like a shadow that follows you around waiting to strike at any time. Mine struck BAD. About 3 weeks ago I was calling my urologist asking if I should go to the ER (which I hate anyway because you sit there forever and it hurts sitting in those seats for so long), so he told me to go see him the next day. I started on Valium and Lidoderm patches (which are awesome!!!!). So I saw the doctor at the Palliative Clinic on the following Monday. He was awesome he had already read my file, and instead of being one of those doctors that thinks he knows everything from what he read in the file, he wanted to hear it from me. So I told him the whole story, starting with my pain starting  when I was about 18 or 19, up until the present. He was great at listening and he told me that his heart just sunk when he had read the file and now that he had met me he felt the deepest sympathy for me. He wants me to start on acupuncture therapy, get a nerve block pump, and possibly taking my bladder out. My urologist has said no about the bladder coming out. So…..hopefully I can talk to him about it and be able to understand his reasoning behind it. I have been talking to the doctors from the Palliative Clinic since Thursday trying to change my dosage of the liquid oxycodone (the pill form stopped being made in January so if your on the pill form you might want to think about getting a new script for the liquid).  I am taking 15 mg every 2 hours. Well, on Sunday I just couldn’t take the pain anymore and went for my 10 hour stay at the ER. The first 4 hours were waiting. If you have IC you know how hard it is to sit in those chairs when you in so much pain. It didn’t help that I was told numerous times that I was being called next and I watched people who came in after me go in before me. That only made it worse. I finally got called in and they were going to get an IV started but no one could get one started. I had 5 tries by the nurses in the ER, then the called in the SWAT nurse. She’s the one that if you need an impossible IV started, she’s the one to do it. On her 5th try she finally got it. They had given me a shot of morphine previous to my 8 tries, and it helped very little. After the IV got in and I got 3 more shots of morphine the pain started to subside. Finally the pain level got down to a level 5. So I decided to go home. I am now waiting for the Dr. at the Palliative Clinic to make my appointment with the pain clinic to get an evaluation for the nerve block pump. Hopefully they will find that I do in fact need the pump. Well, on a happier note, I am working on a sticker/magnet for cars, which will turn into key chains and other things to raise money for a cure for IC. So….I will be making up a new website to advertise for that and I will be putting updates on this website about the project. I need to get in contact with the appropriate people who will take the money for research, and make a deal with them. So I will keep everyone posted, and hopefully we can get the word out about IC!!

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  • 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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