Memory

[Guest guest]

Hi gang, Here are some of my better tricks, A- tape my list to the inside of

the back door at eye level, so I am sure to see it..and then go out the front

door instead! B-propped up a sack of stuff by the back door or put stuff in a

bag and hung it over the door knob and then walked over it or removed the the

sack before I go out the back door...duhhhhhhhh......

[Guest guest]

Amen, Rose! I have been going through that for the last 5 or 6 months too! I get so upset because I

cannot remember simple things........and you are right -- most people, including Doctors, just brush it

off as getting older. That makes me upset too! Why can't the Doctors finally learn that Sarc and

NeuroSarc are really bad diseases and not one "that you will go into remission and probably never

get sick with it again" type of illness. Sorry, for the ramble...........I am so frustrated!!

Re: Re: Connie> > > > > > > > > > > > > Mar Mommer is the one with cardiac sarc(if i remember correctly). not me...so far.> > Life may not always be the party we hoped for, but while we're here we might as well dance!> > > > > > We're having a little bit bigger problem right now that my neuro, and> > > electrophysiologist are trying to figure out. My heart nerves have decided> > > they will no longer obey my pacer except when they want too. I have a> > > setting of 76 bpm . I am 100% paced, it has been dropping below as far as> > > in the 40's and then the pacer goes wild, then it will go too fast. They> > > really cut up if I eat and don't have enough Lyrica on board. The neuro has> > > just recently told me I have sensory neuropathy, demylinating nerves, and is> > > going to do a nerve biopsy. My legs would feel like they were in hot grease,> > > I couldn't stand my clothes, or sheets, or anything to touch them, or they> > > would sting like I had them in a fire ant bed. (I use alot of Lidocaine> > > cream, plus meds). The only thing I can find that fits all the things the> > > doctor has told me and the symptoms I have been having in my legs, arms, and> > > heart is something called CIDP-Chronic Inflammatory Dimylenating> > > Polyneuropathy. The odd thing is that Lyrica in higher doses than I used to> > > take (75 in the am, 150 at night) causes the heart to obey better than it> > > was. It still overrides, and has a weird misbeat. This isn't too cool if> > > it decides to ignore the Lyrica, my heart does not hold it's own. Before> > > the pacer I have a recorded heartrate of 1, and as high as 258.> > >> > > I now take only 10 mg of pred a day and Chorloquine.for my breathing. I> > > could not completely wean off the pred because my adrenal gland will not go> > > back to working. 10 mg is as low as I can go. I found an amazing> > > pulmonologist Dr Fulton. She has been great, ouhhh tried> > > methotrexate before chorloquine. I was one of the 1% that the skin came off> > > my face like a 2nd degree burn, I had to go to the ER and get solumedrol to> > > stop it from spreading any further. Looked like someone hit me in the face> > > with the flat end of a hot 2 egg cast iron frying pan. Needless to say,> > > going to work with my face like that was fun///not.> > >> > > I won't lie and say it doesn't concern me a bit, I have things to do. I am> > > ready to go, but not in a hurry. I have also had someone in a hospital> > > accidently turn my pacer off thinking my heart was strong enough to hold. I> > > instantaneously fell into the abyss. Scared the puddin out of her, soon as> > > she jerked the magnet off I came too instantly. You don't get any warning,> > > so if something happens I won't be able to call for help. I have a Great> > > God, and good doctors; and thankfully if it is CIDP there is a treatment> > > plan. I just hope they find it's name soon, that is half the battle.> > >> > > Don't mean to go on and on, but I can't talk very much to my family. One> > > of those 10 things that sarc teaches us.....my family and friends can be so> > > scared by a disease.> > >> > > I know I was gone for a while, but I have been sick alot since around the> > > end of February. No excuse I know, you all have been sick too. Thanks for> > > listening, I appreciate you all.......Connie> > >> > > > > > > > > > > > > > > ------------------------------------> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community> > > > Message Archives:-> http://groups.yahoo.com/group/Neurosarcoidosis/messages> > Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups.yahoo.com/group/Neurosarcoidosis/database > >