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Old 05-12-2012, 05:24 PM #1
Mariel Mariel is offline
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Mariel Mariel is offline
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It hurts to read of the struggles here, Laura, Dejibo, NewtoNet, and yet it's a comfort to me to read that others are like me, struggling along. It seems most of us were once pretty strong "thinkers", and now we feel diminished and have to put up with some people who are not sympathetic or helpful with that.
Laura, once I called on a student in a high school class I had in CA, long ago, long before dx, and said "hello" instead of her name. She thought it was sorta funny, but that was my "advanced" class, who were capable of some degree of toleration.
Today I am trying to go through papers, and even though they are only MY papers, not an employer's, still it's a struggle. I don't have a good filing system. I might buy a new desk if I lived in an area where such things were easily accessible. Unfortunately I can only buy either a metal or all natural wood desk, so my options are not good---impossible at Walmart, HomeDepot, Lowe's etc.. There is a store here in our small town which does carry all-wood furniture made by Amish. I so wish I could buy a desk from them, and a side table to the bed. Their furniture must be 3 or 4 times the cost of a desk at Home Depot. When we lived in Seattle, my husband could go get me a metal desk at a Boeing furniture sale, for maybe $50. I am so sensitive to ersatz wood that I cannot use a normal desk's ledge to put my keypad on...I must have wood that is 100% natural, not even coated. So my desk ledge, which is teak and nice, but coated with something, will not do, and I told you how I bought a piece of real wood at Home Depot, and the man said they had only 16 linear feet of real wood in the place, the rest was composite from China, and, he added, all toxic. I have to wear a carbon filter mask to go into Home Depot.

Supposedly this sensitivity is from Porphyria rather than MS. It is probable that through some odd genetic weirdness, I got both of these diseases and I don't apologize for being
weird enough to have two diseases which cause somewhat similar neuro symptoms. But I usually don't tell people I have both...too hard to explain. And you all know I have Polycythemia Vera too.
today the struggle is almost not worth doing, but I've put off the "papers" too long. So I have to do it even if cognition is impaired.
I told my son today that he keeps telling me I'm stupid (or something slightly less bad) but then does not help me with technical things (on the puter or printer) slow enough to allow me to learn. I think he got the message...he is trying harder these days.
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Blessings2You (05-12-2012), dmplaura (05-12-2012), SallyC (05-12-2012)
Old 05-12-2012, 09:05 PM #2
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dmplaura dmplaura is offline
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Quote:
Originally Posted by Mariel View Post
I told my son today that he keeps telling me I'm stupid (or something slightly less bad) but then does not help me with technical things (on the puter or printer) slow enough to allow me to learn. I think he got the message...he is trying harder these days.
Mariel I'm glad to share my own experiences (I'm glad you're happy to read them - I blab and blab, often too much for my own good, or the good of those around me!).

I'm sorry to read that you're dealing with 2 conditions at once. It's one thing to deal with cruddy MS, but to deal with Polycythemia Vera (I am completely ignorant to this disease/syndrome - I'll have to educate myself) as well, that takes one tough and brave soul, from what little I have read from your post (sensitivities and such). Wow.

I do hope your son can slow down for you and begin to learn how to accommodate at your pace better. I think he'll learn with time what works best for the both of you by the sounds of things.
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2004 to present - Trigeminal Neuralgia
2007 to present - Burning Mouth Syndrome
March 2008 - Multiple Sclerosis DX
05/2008 - Relapse
05/2008 to 02/2009 - Copaxone
10/2011 - Relapse - Optic Neuritis developed
9/2012 - Relapse - Balance issues 1 sided
8/2012 - Erythema Nodosum - diagnosed 10/2012, reaction to Topiramate (Topamax)
April 7/14 - Raynaud's Syndrome DX
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