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!

:hug: :hug: :hug: :hug: :hug: :hug: :hug: :hug: :hug: :hug: :hug: - j
AND THANKS!

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

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 :)

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

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

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!

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

Thank You
 

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

:grouphug:

:hug:

rose

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

Thank You All!
 

I'm afraid I had one long overdue meltdown moment. I can really blame it on the meds this time. I was supposed to have finished my IVIG this week and it's been delayed till next week. I am a VERY CRABBY PERSON rite now!

Now for those of you who wonder about 'dahlek' here's a link:
http://www.bbc.co.uk/doctorwho/gallery/
I understand going 'deeper' into this site that this is the 'BLING!' Dalek. Go figger, a Dalek[or Dahlek] with BLING??? NOT!
Dr Who has always been a favorite of mine as it's THE longest running SciFi/fantasy show ever...and still going [longer even than Star Trek].
'DALEK' had originally been spelled DAHLEK, my assumed name [I checked before I'd adopted it] After I took it on, well they changed it dang it!
Maybe for the better as you could imagine the 'junk e-mails' I'd get with the new moniker? Noo thanks.

FYI - I believe and HOPE I've no real physical resemblance to this 'creature'. I mean, If I DID I would still have problems with stairs, but, I shouldn't likely fall over? These days these creatures gravitate [or is it levitate?] so stairs are not an issue. If WE could invent an appliance to aid us and others with balance and movement handicaps [a sort of 'hover-cart or chair'] We could all pay all our own bills! And probably have bucks left over for research... After all Daleks have three main words in their vocabulary: OBEY! EXTERMINATE! and the last is DESTROY!! Wish we could destroy what goes klaphooey in ourselves that's destroying our nerves.

I've learned soo much here, and plan on learning more... I wish we all plain out didn't hurt so danged much!

To you all - :You-Rock: ! AND THEN SOME! - j

Hi Dahlek: I'm hysterical. I never connected the dots. You and Dr. Who. Now that is funny. Me??? I'm a star trekker from way back.

Oh, and speaking of anniversaries. TOMMORROW, ALAN AND I WILL BE MARRIED 27 YEARS. He is leaving for his night watchman job right now and we'll meet up at Dunkin Donuts for breakfast tomorrow. He still has to be off his feet so when he comes home, I wait on him hand and foot.

Wow, we lasted 27 years. Holy Moly!!!!

mel

Ha one day we will talk and i may tell you who my husband was :) Sue

Melody, GO PARTY!!!
 

:partytime2: I'd celebrated my 30th earlier this year...I believe we BOTH snoozed out early that nite... It's like shoes, only better, we fit, and only wear out in some places...

Knowing Alan it'll be hard...go to some great Italian place that has scallopine w/capers [tell him it's a veggie[the capers] -IT IS] and you get your red meat quota for the year.. Of course all of it with lemon juice and garlic...A little candlelight, and some background romance music?//Who knows?

Sue, I absolutely CANNOT wait to HEAR that bit of life! Tell me TRUE! I now am in suspense...but I will NOT hold my breath. - j

Mel
 

Congrat's Mel it's because both your both so cute. Someday we will
talk and i will tell you as well who my husband was, if he was still with us
We would of been married 41 yrs. :hug: :hug: to you and Alan Sue

Sue:

Were you married to a celebrity?? It sure sounds like you were!!!!

My cousin is an actor. Remember TAXI, the show with Tony Danza and Danny Devito?? Remember, they always went into a restaurant and sat down and there was a bartender named Tommy? That was my cousin. TJ Castronova. He also produced Tales from the Darkside.

Haven't seen him in 40 plus years. He was my mom's first cousin.

He also was on General Hospital several years ago.

Melody

dalek
 

I tell you,before your Ancestors had turned the first wheel, the
people of my world had reduced movement through the farest
reaches of space to game for children.

This was not my husband,but tell me who is William Hartnell??? Sue

Mel to many SF fans yes,i liked taxi!!:hug: You 2 Sue again

Dahlek

Davross here.........

Might I say, that I for one, am immensely pleased you are here. Regardless of the anniversary. For we are not only our challenges, but our Milestones. Of which you have many.

The only ones that I'm sure are less than happy that you are still here, would have to be of course:

William Hartnell
Patrick Troughton
Jon Pertwee
Tom Baker
Peter Davison
Colin Baker
Sylvester McCoy
Paul McGann
Christopher Eccleston And
David Tennant

Surely after all these millenia, you think they'd be over it!!!!!





Love and hugs

Davross..............aka......

Noong (another Dr tragic and still scared of CYBERMEN!!)

Very good noong,we could all go in the chat room and chat,but it's
scary!!:eek: :eek: Sue

Sue: You said: " I tell you,before your Ancestors had turned the first wheel, the people of my world had reduced movement through the farest
reaches of space to game for children."



What on earth does this mean????

Melody

Wow you have been through a lot. Your a fighter and I know for myself its hard to not give up but I'm not and holding to HOPE! Thank you for sharing and I'm sorry for all you have been through but helps me feel less alone.I found a penny on the ground and I'm hoping its lucky and I'm sending good luck healthy vibes to all you. This is a wonderful community.

Sooo much to reply to..
 

Daniella, you have choices: either go around being miserable and going WHY ME? or go around and while hurting try to turn it to WORK for ME! I chose the latter?

Noong: Davross? Boy, did I and am I laughing at that! In spite of it all, the dahleks' still have a teeny bit of humanity in them....Wasn't that their undoing? After all, having this 'stuff' sure can take that out of you at times. Dahleks like our 'stuff', can always time travel tho, and come back-sigh.

Also, I believe there is going to be yet another new Doctor, newest one was almost the guy who decided to become the 'new' Bond instead....
I'm told that the first Doctor you see is always the one you like best...sort of like your first love....Since I'd encountered Baker, Pertwee and Troughton about the same time..I don't worry. At least one doesn't see The Doctor doing travel ads! No need.

I do believe I'll go on still giggleing about Davross! Got me there for sure! - j :yikes:

dalek
 

Laughter is best medicine!!!:D Sue

Congratulations!
 

And thank you for being here. You certainly have managed to retain your sense of humor and have had an awful lot to have to deal with...

May you have many more anniversaries and milestones...

Meanwhile, I am going to go and try to figure out what you guys are talking about...

Cathie

Your right about focusing on what you can do. I will think of you and that saying especially when the pain becomes severe. I agree about laughter. Nothing like it to lift the mood.