My Child and RSD (Reflex Symapthetic Dystrophy)
(Reflex Symapthetic Dystrophy)
May 14th 1999
I'm SO excited!!! My day started out HORRIABLE with me TOTALY loosing my temt. in the dr's office this am. He's an idiot so on to the next! Jen's in horriable condition, was up till 5am holding her head while she threwup! None of the meds are helping, BUT thanks to Lamar, we found something that may!! Will start her on it tonight! ALSO Jen was so up due to her having this start now in the OTHER arm meaning this continues to spread, mailman was ringing the doorbell today, I answered and noticed he had a huge package! Thought, OH BOY! LAMAR has GOT to be the kindest human being I'v EVER ran cross! Jen's inlove with the Spice barbie dolls, turns out Lamar sent her a wonderful spice girl doll she could'nt find anywhere long with some other wonderful things. I was so happy to see a smile on Jen's face my husband & I almost cried!! BIG OLD BLUBBERING BABIES HERE!! People, this is what we discribe as a act of love! This was the 1ST time my little girl has smiled in a MONTH!!! Lamar is also helping us to get Jen into a special hosptial possiably out of state for special treatments where the dr's know what the hell there doing! Jen is up for somemore surgries soon, so we HAVE to know the dr's are good!! So, ALL keep there fingers crossed!!! Mircles still seem to be happening, I know all this has GOT to be happen to our family for a good reason & will prove out in the end. Thankyou so much lamar, you put a smile on a very sick little girls face today!!! Wont be forgotten!! Cant wait to hug you in person!
Time 4:08 PM
May 17th 1999
Todays the 17th, I know I know, suppost to keep this updated everyday, fact is, yesterday was I was simply stressed out from staying up all night with Jen & not knowing what to do for her pain. Good news though! Threw the help of a dear friend Lamar, we now have an oppointed with Dr.Swink, a professional which will guild us to the help we seek for Jen, was thrilled to beable to get a appointed with him. Normaly the waiting list to see this dr is over a MONTH instead were to be seen next monday. So, this is good news. Jen asked me last night why her other arm now hurts at the shoulder & elbow, sadly haven to explane to Jen it's due to spreading baby, but you'll be seeing really good dr's here soon that can offer more treatments for you. She's holds hope now so.... is better than no hope at all. Today Jen's in quite abit of pain. I want this site to be forwarded to as many that will pass it on.I want for someone that has been told there loved one that now has RSD to understand that the RSD pain & systoms Jen feels is real & NOT psychological although she is starting to face some emotional problems do to all the iv's they have to do just before a nerve block. Jen's never been one to take to iv's or shots. So, she screams & throws fits when it comes time for the iv or shot. She's on antidepressents aswell as the herb Kava-55 to help her with anxiety. So, all will tell soon how well the new meds & herbs are helping. I'll admitt... last night I was so stressed thinking bout Jen's future & what she's facing now really overwhelmed me. Started to drink a beer. One beer lead to another. For I new it, I was drunk. Did'nt feel anything, is what I wanted to feel for a few hours. Was'nt a good medican for what's happening. The best medican I realize now, is to go within myself & find the inner strength that is restored for us when times get bad. I must be strong. It's important to me to remain strong for Jen. She's gonna need my strength. I think, noone understands how I feel or understands my fears. There real to me. Jen's future is uncertian. This scares me. So, not only a goal for Jen, now one I'll make for me. To get threw a day remaining stronger than the day before.
May 19th 1999
Time 7:00 PM
Took Jen to therapy this am, all went fine. Jen continues to work hard EVEN though she came home with WIRES all over her arm. This is a Tins unite. The dr's are haven Jen wear this device to see if it helps with the pain. So, will see. Must admitt, Jen looks like the bionic women LOL she laughed with me. Good to see she maintains her sence of humor. Found out the school has deffently faild Jen for the year. Wont get off into that, makes me to mad. So, homeschooling for Jen is in the cards deffently. Been arguing with Rick (husband) over this homeschooling issue. He feels kids belong in school with the rest inorder to fuction right in life. I feel the school systems are so screwed up & refuses to see a childs concerns/speical needs/ext ext..Jen was beaten last year in school serveraly for her backpack touching another while passing the other in the hallway. landed Jen in the hosptial with beleaving it was her fault & a $200 fine for TRYING to protect herself by swinging her hands at the feet when being kicked in the face. OUR schools say, a child has the right to #1. Lay there & refuse to hit back #2. OR as a means of self defence, cover your face & take it. I took the school to court this year, & won. All charges were dropped. But rules of the game have'nt changed for the school. I beleave, adults MUST bethere for the chrildren when they need us & our help. We must'nt let them down. Our schools are letting us down. Someone must protect them, as all remembers, there was the Col. bombing not to long ago, is this why we have chrildren? to send them to a unsafe environment! Schools are becomming more dangerous than driving or walking to the store, WHY , noone looks out for the kids, there basically on there own. There are other ways of schooling a child & still function well with the population & our socity. Just % more days till we find out if Jen will be excepted into the Shriners hosptial, holding such hope! Jen's a bit scard, wondering what they'll do to her next. I can feel the fear, & I'm 33 years old.
It's important to me that people care and is the reason for this open book diary. I'm asking all to PLEASE forward this page to a friend in hopes they'll do the same, then please take the time to sign the guestbook so I know SOMEONE cares and is keeping up on Jen's condition. Thankyou bunches
E-mail me if you have any questions or comments or would like to send a letter to Jenny 
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