My Child and RSD (Reflex Symapthetic Dystrophy)
(Reflex Symapthetic Dystrophy)
May 10th 1999
Spent little time resting last night as Jen, she continues in pain. Actually got to bed a little earlier than normal. Jen finally fell asleep round 2:30 as I. This morning we had an early meeting with the doctor at 8:00. Doctor see's Jen, wasn't too happy with Fridays surgery. Doctor Farless tells us that Jen's NOT improving and is setting up surgery this week again. Wanted to perform surgery TODAY without warning, but wasn't able to due to Jen had already eaten this morning. Waiting on his phone call. Doctor also mentions if this nerve block doesn't work this time, bone scans will be next. Her bones are effected. Bad news. I noticed when I was helping Jen get ready this am, she mentioned her chest hurting. This is a new complaint! Will the spreading ever end!
Time 12:35PM
May 11th 1999
Took Joshua to school this morning, was looking at other people driving around thinking how normal everyone looks and what a normal life they must have. Wonder if that's what people see when they see ME driving. Occurred to me, we don't really know what's going on in someone's life at all. Were all just out and about doing our thing. Dr. called 9:30 this morning, says to have Jenny at the hospital no later than 8am tomorrow and that surgery will begin soon as they start the iv. Another day of my stomach in knots. I worry bout her screaming and feeling the pain as she did a few days ago when this was last done. Geezz, it's not even been a week and already this is the second time for Jen! Wonder how much more she can stand of this. Dr. assures me she'll be totally out this time and will remember nothing. Jen woke up little while ago, is complaining of her jaw hurting a bit. I new it was hurting last night, just didn't mention anything. (Was HOPING was just due to her gabbering to much haha)
Will mention this to the doctor tomorrow. My nerves are on edge and noticed I've been snapping at everyone lately. Lamar told me something interesting last night. Says most have to take one day at a time, if that's too much, then take 5 minutes at a time. I think that's what it's boiling down to. 5 min. at a time. Rick emails me a few minutes ago, wants to know will this ever end! I wish I had the answer. I can feel the stress building up with all of us, including Josh my son. Went to Eckerds yesterday. Josh wanted a toy, felt so bad when I told him no, that we couldn't afford it right now, we have to save our money for the Dr.'s and treatment for Jen, he doesn't understand. This is all so new for us. So many changes. Need to call the school in a few, see if there's ANYWAY or anything I can say to talk them into passing Jen to the 8th grade for next year. Dought it. The school seems to have their mind made up. Jen's so upset bout failing. Really aggrivates me! A child has a fever, they call ya to take'em home! When they have RSD, they're required to stay and suffer with pain. School systems are so screwed up! Suit me to homebound Jen for as long as it takes. I can see her getting more depressed. Really hate to see that. But is expected. HELL! I'D BE DEPRESSED! I'm so bored! Miss the things I use to do. LOVE to go shopping or hit the flea markets or get into one of my crafts. Was hoping to start my stain glass project soon. May be I still can. Be good for Jen to help. She still has the use of her left arm. I think she'll want to. Guess I'll carry on with my exciting day, smoke more cigarettes/clean house/fight the school and worry bout Jenny some more. Poor baby, it's not her fault. Josh said he has a field trip this Thursday. Jen was jealous, she wants to go on a field trip too. I told'er next year there'd be more trips for you Jen. She dropped the subject and was mad at herself for something that's not her fault. Will have to start planning somewhere good to take her this summer.
Time 6:21PM
May 12th 1999
Took Jen to the hosptial this am at 8:00 sharp, & another hair raising day it was! To start off with, took the dr's 4 tries & 2 hrs to get the iv started & IN !! Jen's always been a hardone to show good veins! SO with this, she kicked & screamed the WHOLE time! SPECIALLY when they decided to have the iv put in her FOOT! Jen just simply got up & said I'M GOING HOME MAMA! HAHAA . Jen was put fully to sleep, & we BELEAVE the the surgery to be a success this time! ALL FINGERS & TOES CROSSED! All symptoms were present to let us beleave that. Her arm was warm & eye was bloodshot, so this is good! Meaning they hit the RIGHT nerve, although was HORRIABLE & hard to see Jen in recovery & seeing how the anasthestic effects one, suppose it's just cause she's my kid! STILL dont like seeing my kids that away. Jen while under anasthetic mentioned Lamar's name & taking her fishing aswell she mentioned my late brothers name, says "WHERE'S BUBBA" almost made me cry, other than that, just kept saying, "I cant feel anything" WHAT A SCARE! & I WANT MAMA! so good to see her come out of that! only took 4 HRS TOO!! Still have one more surgery to go, then will go from there & have a look at her progress, if it's not anybetter, than back to the drawing board. This time will be different type of surgery. (spinal) urggg THAT should be interesting. NOT!!! As always, mom & dad were there today, worry bout mom's B/P & the stress it causes her. Dont know WHAT I'd do without her or daddy either. There kinda my left arm. Jen's sleeping in my bed now, probley be out most of the evening, hope so, was really a hard day. Told'er she's gonna be used for my YARD sprinkler purdy soon with all the holes there leaving in her. She laughed. In recovery Jenny said her tounge felt like SAND PAPER! LOL!! I told'er I'd use her tounge to sand the boards in daddies garage! HAHAHA she laughed at that too, was good to see a smile. Cant WAIT to see how her arm & the rest of the effected areas are when she awakes. For now I'm worken on linking some before & after pics of Jen's arm & her beautiful face aswell on this page. Like all to see the effects of RSD & what it does.
Time 8:52AM
May 13th 1999
Getting a sleepy start this am, spent last night worken on this page & taking care of Jen seeing she spent most of the night in pain from all the iv proding from yesterday & ofcourse her neck was hurting from the surgery itself. Jen tells me she's not going to do this anymore regarding the hosptial proceedures. Is hard to tell her we must if there's any hope of her getting well. She looked so discussed, but is just something we have to do without given choices. She's sleepen in late this am as she usually does, least I know when she's sleepen she's not in pain. My cam will be running live all day & can be seen at comrades on my homepage for those interested. Think everyone thinks I'v done died & gone to hell HAHAHA but infact I'm still here. Gonna spend the day catchen up on some housework, in a rather good mood today, feel Jen's gonna be ok. Have to remember to fall back on my faith. I found that writing on this page REALLY relieves the stress for me. So I write then get on with my day. I'll check in later let yall know how Jen feels once she's up & about.
Time 10:45PM
May 13th 1999
Today was long, tiresome & frustraighting & GLAD IT'S OVER WITH! Was so happy to see Jen wake up not in pain with her arm hurting & the color & temp was good aswell, least till the shot were off was soon back to bad. I'm so tired of haven to be at the dr's office at 8am, wonder if he could make it alittle earlyer. Showed Jenny how to make a webpage today, she got a kick outta it. Wont be long, she'll be taking off with it, she's learning real good. Wondering what the doc is gonna tell us tomorrow, think I'd rather not know. Thinking I'll go so something this weekend, need to get outta the house and spend some time with the kids. May get a project going in the way of picking up that stain glass project I'v been wanting to start. We all are MORE than ready for a change.
E-mail me if you have any questions or comments or would like to send a letter to Jenny 
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