Yesterday was pretty awful. I've learned to take each day as it comes with Emily. Some days are great and some are really bad. Yesterday Emily woke up tired and crabby. Sleeping has been a problem from day one with RSD and on average she gets maybe 4 hours per night. I thought being in hospital would help because they have a tight schedule for the kids. Up and ready for action by 8:30 am each day with no excuses with hard labour till 3:30 pm. A great day actually packed with tons to do so therefore you would think that Ms Emily would be out cold by 10 PM. Oh my goodness how wrong you are!! Every night she kept the nurses buzzing until way early in the morning. I think at first they thought I was exaggerating when I said that she doesn't sleep. They would look at me like I was insane! It didn't take many days for them to realize that I meant what I said, Emily can't sleep. Doctors have tried all kinds of drugs to make her sleep in an effort to let her body rest but so far nothing has really worked not even fresh air and exercise. I don't make a big deal out of it here at home, she still has a bedtime and I don't allow her to wander round the house at all hours. I also get her up early because I don't want to encourage her day to be upside down. We have relaxation tapes and books but nothing really does the trick.
Yesterday our day was a struggle from the start. Lots of pain and soreness from her bad foot made worse by the fact that the day before her foot just filled with fluid. A big fall over her cat Lila completed our day adding a sore knee and lots of tears. Sometimes you just have to start again. The great thing about life is that each day we get given a new chance at something better, a fresh start. We took a breath and started again today ...
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- Emily has just turned 14 and lives in Texas. She has nerve damage in her legs, severely in her left leg below the knee. This has triggered RSD type II in her left foot, foot drop and contracture in her hamstring and toes.Since I started this blog back in March Emily's RSD has spread to her other foot, both knees, her arms and hands. Although she has this crippling disease Emily tries to keep as positive as she can. She has an amazing spirit, a huge heart and strength that you rarely even see in an adult.
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3 comments:
Has anyone suggested Epsom Salt baths to you yet?
This may help her settle to sleep. You can throw in some bubbles if she likes them.
Epsom salts contain magnesium and it absorbs through the skin. She has to sit in the tub at least a half hour (this is important) The magnesium helps with spasms and toxin release out of the skin. The bath should be a temp she is very comfortable in, and kept at that temp, if the air temperature is cold (I live north and it gets cold after about 10 minutes here in the winter) (so I would have my hubby, poor in some warm) to keep it that way as I soaked.
Also, magnesium helps the extra fluid pass out of the skin from swelling. This is a big one. My hands were almost purple in the begining and now other than bad flare days, they are almost normal colored. I try to move bad limbs around (as much as she can stand)
Just some thoughts and BIG HUGGY'S (gentle of course to Emily!!!!!
Your friend Rain :)
Rainbow422@aol.com
The fluid in her foot is new. I've read that RSD sufferers can get swelling but up until Tuesday she had none. Monday at our hospital visit I was asked if she'd had swelling and I cautiously said Nope, no swelling LOL then BANG! there it was!! Our PCP is as lost as the other medical people I've spoken with where RSD is concerned so no, no epsom salts suggested. Emily has an APV (cath port in her belly button) so we can't do bubbles but I will most certainly give this a try. Currently we are elevating and using a support hose. From day 1 Emily has struggled with light touch, the wind, a sheet etc so we started using a support hose to help with that. It offers firm touch all day long and it has actually reduced some of the sensitivity.
Do you rock? Emily rocks all day. If you bring it to her attention, which I rarely do she stops rocking for about 10 seconds then jiggles up and down.
Emily send a hug back to you today, she told me to say Hello :)
Thank you for your every helpful tips, I really like getting them.
She can soak her feet at least. I do not rock but I do fidget alot. My RSD is in my upper hands, arms and wrists. It makes everyday activities very difficult, 'cause I cannot always take a shower, feed mydself, drink etc. I have not opted for alot of the normal treatments (so far, new painclinic next week)and tried to stay as limited medications as possible.
When it hurts really bad, I do breathing excersises, and get hugs from my daughter. The breathing excersises are similar to labor breathing. Quick in and outs (floods system with oxygen) and then in through the nose out through the mouth in long breaths. You can show her how to do it and she needs to pay attention to the breathing not the pain. Tell her to listen to the sound (this may help her focus)
Does she say anything about electric pains or bone shattering pains. These are the worst pains (worse than labor). With increases in my Lyrica they seem to subsided for the most part (Thank goodness). As for skin sensitivities. FLEECE, buy it, use it often and a super soft fuzzy blanket just for her big so she can fit her whole body over under, however she needs too. Use your wrist as a guide. If it feels soft there, it will probably assist her (can always ask for it as a present if it is out of the income) Mine was, and someone gave me two, and they are my savors on pain days (I feel like linus from peanuts\snoopy some days, but this diganoses, is hard to find comfort ever so who cares) GRIN.
I also have alot of nero problems. Sensitivities to sound, bright light etc... These overtax me as the day goes on. Often just 15 minutes in a dark quiet room helps, if she is having any problems with this.
I used to love music, now even my favorite stuff puts me into overdrive (type does not matter either - even relaxation tapes annoy me). She may have these types of sensativities and might not understand why. You will not know to tell the doctors because they are not going to offer that there may be issues.
Just a few more thoughts!
I will see if I can find something safe and fun for her to do... Do you have a printer? Is she allowed to use the computer? I just found a safe fun site for my own (we super restrict here)
HUGGYS!
Rainy :)
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