Re: My apologies

November 5, 2004

,

No need to apologize...Use delete when you have to and don't worry about it. You have alot on your plate which I am sure you have heard and is becoming a cliche about now...I also hear it way too much..so i can empathize. I also have a special needs son who is 9 and autistic...and as you said it so well just waiting for the other shoe to drop is a constant here. I am so sorry you have to endure so much...but try to look at the bright side of things...even if it's just a fleeting smile from a family member...look around and try to see the positive...it can be so hard to do sometimes. I hope your daughter will go into remission...it must be the scariest thing to hear for you that she has RSD...since it has changed your whole world and caused you so much pain and you wouldn't want to see anyone go through what you have to. But remember...RSD hits everyone differently...she can go into remission and she can have it at a lesser degree then you do....I

know that may not help much but hopefully it will lessen your anxiety about it. I hope you brighter days and less pain...Hugs..GinnyKM86@... wrote:

Hey guys. I need to apologize to each and everyone of you. I've been so far down in the dumps and had so much going on that I've literally been hitting the delete key on my computer. This isn't the type support person that I usually am or like to be.

I had the resection of my radial nerve at the end of Aug. They say it was successful in that they untrapped a bunch of nerve endings and buried the nerve ending deep into my muscle. It was unsuccessful though in that the rsd, in my eyes, is much worse. It seems that everytime my pain gets to that lovely 10 and stays there for a while, something else pushes it higher. I finally told my pain doc that my pain was at 1497 and occasionally dropped to 1492. It's not that he's not trying to control my pain, it's that my body doesn't do well with meds. I had a really rough time after the surgery too. The one night stay turned into a week. My hand is so tender that it's been over 2 months since the surgery and I still have 7 of the initial 12 steristrips still in place. The surgeon said that he and my pain doc had discussed using glue instead of any stitches which was a really good decision.

As some of you know, I have a medically fragile child that requires a lot of medical care. My mom was here helping until a few weeks after my surgery but had to go home to take care of her home. She explained the situation to my aunt (they live together), and my aunt (she's a nurse) called offering for both her and my mom to come up here to help for 1-2 months to help. All she asked was that I cover all the bills and get her some sort of a membership like to the YMCA so she could do her water exercises. She 'supposedly' has a back injury from work. After all the work my son, his girlfriend, my daughter, and I did to pull a bedroom together, getting her a ymca membership that she so desperately needed to do her exercises, and then letting my doc start a high med dose plan, she shafted me after about 2 weeks when she up and said she was going home. It started when I asked if she'd like to go down and check out the ymca.

She looked at me and said well depending on what you find out at the doc tomorrow, I'm planning to go home this weekend or the next---that was on the 11th. I overheard her talking with her son that night saying she'd be home on Sat. Well I saw my doc the next day and he removed my cervical epidural and moved quickly at decreasing my meds, so that I could take care of my daughter. I went from the epidural, morphine at 20mg every4hours scheduled and 10mg every 2hrs as needed (which was very often) to Ultram and morphine up to 20mg four times a day. Talk about a bad crash off meds---adding in the upset of her deserting me, and I became a total melting pot. It wasn't enough that she hurt me, but she also took my mom's dog home with her citing she needed her for protection in the motel and that mom wouldn't care for her properly. I felt totally rotten leaving my mom to choose between helping me or having her dog. Of course, I did

win out, but it made me feel terrible. My husband is a long distance truck driver, and he was calling me multiple times a day just trying to hold me together which made me feel bad too---he's so far away and I'm dumping on him. So needless to say, I don't think I could have gotten much lower. I did a lot of typing back and forth with some friends, my atty, and even the psychologist that w/c has me referred to---I was getting concerned about the need to take out 'water damage insurance' on the laptop because all I could do was type and cry.. I've never felt so close to saying I give up, someone put me out of my misery. The only thing holding me back was not believing in it, knowing I'd hurt my family and friends, and remembering my atty telling me that if anything happened to me before we settled that my family gets nothing. So, I've tucked that 'fake' smile back on, and I'm trying to pull myself together. I've told the pain doc that

I didn't think pain could get as bad as it is---everytime I hit that #10 on the scale, I find out it really can and does get worse.

As if things weren't rough enough. my daughter was admitted emergently to the hospital on the night of the 23d, she was rushed to CT in the middle of the night, and to the OR at the crack of dawn. My sonn had to leave work to get us up there, and initially I wasn't going to stay with her because my pain was so bad. They about begged me to stay (my son was like 'dang they've asked you 5 or 6 times now to stay), so his girlfriend brought me stuff to be able to stay up there. With all that went on, I'm glad I stayed.....I'd have really felt rotten if she'd gong through all of that alone. Apparently, the dingbat we had for a home health nurse was removing and replacing the water in her Jtube balloon. The tube wasn't even in her intestine; the balloon was blown up in her abdominal wall. The jejunum had totally closed up, so they had to re-open it, and do a revision of the j-tube. That, unfortunately didn't stop her

pain. She'd been admitted with intractable pain on her right side despite my giving her IV morphine every 15-30 mins. They're thinking the j-tube mess was found accidently, and they're discussing RSD/CRPS in the chest and abdominal wall on the right side. They did call in the pain team, and luckily it was my doc that was on service that day. He has her on a 100mcg Fentanyl (Duragesic) patch and we're titrating morphine up to 2mg every 2 hours. She was discharged this past Sat, but when I called for a f/u appt in the pain clinic, I was told she had to go onto a waiting list then when she came to the top of the list they'd meet and decide whether they could help her. Like, no way, no how---I emailed my doc, and he called me the next day.....said he'd be taking her on as a patient and following her for me. I know her neuro has mentioned CRPS several times in the past, but hearing it again from him and then the pain doc agreeing about broke

my heart. I can't bear for her to go through this burning, searing pain. The only thing in her favor is that she's young and hopefully they'll have a greater chance of putting her into remission, and as the doc says she's not a 'weenie like a mother' and can tolerate meds.

So that's my messed up world in a nutshell. I doze off for a little bit, and wake up waiting for the next shoe to fall.

November 5, 2004

- I'm glad to see you posting to the group again (but I sure hope that our little notes back and forth won't stop ). If the number of posts here starts to overwhelm you, don't hesitate to delete....Just pop in when you can and know that all of us care very dearly about you and Stacey. We're here to support you. Will give you a call later today. Hugs - BarbKM86@... wrote: