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Old 05-03-2007, 10:01 PM #1
dahlek dahlek is offline
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dahlek dahlek is offline
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Default Anniversary of sorts...

I want no pity, I just want to THANK everyone HERE and on other boards that helped me get to celebrate this 'anniversary'.

Four years ago I started to get numb, 5 weeks later I spent an horrific 14 hours in an ER waiting room before I was seen, then tentatively diagnosed. The 'wait entailed watching other's either leak from 'wounds' or vomit. Another 7 hours before they could find a BED to admit me...with an 'agressive 'PN...went from below the ankle to the KNEE while waiting. Was there, then kicked out after two days of DUH and sent home...BTW on the legs it's now up to my BUTT? and almost to the elbows on the upper limbs. It mite have been a 'sub-acute' onset, but I assure you the PAIN while waiting was ACUTE? [HOW can one both DIP their appendages in frenchy-fry oil, FREEZE them, then plug them into a faulty electric outlet?-It happened] I'd not slept for four days w/the pain...after, I don't think I slept a whole nite for over six months after. It was almost 2 years before I could have dreams again? The meds s/e?s well the hallucinations were the worst.

It's THREE years since the true diagnosis of CIDP/Agressive autoimmune PN was confirmed. A month from now will be my anniversary for IVIG. Thank goodness for this, despite all it's risks!

It's ONE year since my Cancer surgery, and all that has entailed...I understand I've 4 more years on an 'aromatse inhibitor' essentially a post-cancer estrogen blocking therapy [not called, but IS a chemo-therapy] that is supposed to keep cancers from coming back...I can't after the whole neuropathy diagnosis help but NOT be VERY suspicious. Wonder why.

It's ONE week since my diagnosis of Hashimotos's Thryoiditis.. an auto-immune aspect to thyroid, that no one could admit to, cause the basic numbers were 'right'... [A hidden, closet syndrome? DUH?]

Due to all the above I've gone from Osetopenia to POROSIS... Despite all my posts, I am not a totally 'happy camper'? I am not, but am trying to do and learn all I can from you all and other places to make the best durned LEMONADE I can...lo-cal too! Tho I guess the two-3 bone breaks in just the past 2 winters should have been a big red to docs, tho it wasn't, I Became THAT BIG RED FLAG...Speaking UP.. Not to mention the 'other' little fractues!

You all here have been mainstays to both reality and sanity of all this stuff! SOO...HERE are lots of hugs for you!

- j
AND THANKS!
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Old 05-04-2007, 12:12 AM #2
shiney sue shiney sue is offline
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Default dalek

I remember reading for months before i posted,i can't tell how much
i have learned from you,what a joy you are. And you still have a sence
of humor..I'm so glad your still here,and i hope to see you down the road,
yes i believe i see you all 4 more and 4 more.. Sue
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Old 05-04-2007, 02:04 AM #3
Brian Brian is offline
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Default And i'll bet there are

plenty of people here that are very thankfull of you, for all the effort & support that you have put in to helping them get through hard times whilst your not 100 % yourself, yet you retain a sense of humor, amazing.
good on you,
Brian
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Old 05-04-2007, 04:57 AM #4
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Default

It's hard to say "happy" anniversary Dahlek, yet each anniversary of this type is wonderful. I agree with the others, you are wonderful. Thank you for participation in the forums, we all need you. Love ya, Deb
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We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!
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Old 05-04-2007, 08:06 AM #5
Lupin Lupin is offline
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Default No - Thank you........

For all the good advice and kindness you share here. As a newbie here I have learnt so much from you. So... thank you right back at ya!
Lupin
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Old 05-04-2007, 11:38 AM #6
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Red face Wow...

four years in the medical system, in a major way.

You are quite the trooper. I guess if we learn anything from being ill, and shuffled about, it is to be patient, informed, and firm when it comes to
dealing with medical care today. A sense of humor as well, helps deflect the
frustration, as you know so well, and demonstrate here.

I wish I could wave a magic wand and make the problems disappear for you!(and others here).

Suffice it to say we are all in this together and that is something in and of itself!
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Old 05-04-2007, 12:17 PM #7
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Default don't know what to say.

I've sat here with tears in my eyes today and read your post. I can't tell you how many times I've thought of that "balloon bouquet" that you made for me when I went to Mayo. I'm not congradulating you on the illnesses, but congratulating you for being so much support for so many people including myself.

This road is hard and I share so much of what you are going thru dalek. The multiple bone breaks, the neuropathy, the autoimmune illness. If only we had a magic wand that would give the doctor's the knowledge that this group has dug up in the past 4 years. I salute all of you for your kind and courageous journey.

Maybe in our lifetime they will find more help for all of us.

Billye
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Old 05-04-2007, 01:08 PM #8
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Default Thank You

For never-ending positive support and reaching out to all of us - no matter how you are feeling! You are an inspiration!!!!

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Old 05-04-2007, 07:21 PM #9
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rose
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I will be adding much more to my B12 website, but it can help you with the basics already. Check it out.

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Old 05-04-2007, 08:01 PM #10
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Default My thanks too

Dahlek,
I've been a member for a very short time but I've come quickly to respect your opinions and advice - much good to be derived from both and always given w/ a marvelous sensse of humor - much to be thanked for in my opinion.

Too bad the Dahlek's themselves couldn't address PN in their ususal style - EXTERMINATE! EXTERMINATE! - ah well, perhaps a new story line for the next Dr and his time capsule.
All the best

Alkymst
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