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Biomarker for Diffuse Scleroderma skin has been discovered!


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Whine~ Spoons are Tarnished and Ruined!


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#1 Jeannie McClelland

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Posted 01 February 2011 - 06:05 PM

My poor spoons (Spoon Theory) seem to have suffered lately. They look like Uri Geller has been bending them. They're tarnished too and some of them even look like they were used to un-jam the garbage disposal - while it was running! I've tried to find some new ones. I've even looked in the thrift shops and and pawn shops, but no joy. Seems like some are missing too and I've looked in all the usual places, but can't find them. Sigh~

This last year has been one slow, steady, slide downwards. It's not been an aggressive decline, but it hasn't been the slight bump and good recovery that I've been used to in the previous 3 years. The fibrosis is worse and my GI system has been a real pain in a lot of places. :( I've had more muscle and joint pain, more than plenty shortness of breath, fingers and toes that are a lovely pale lilac almost constantly~ Exercise is harder too. The last 6 weeks have been really miserable. Bah humbug! Naturally I would like a new pill that would stop this in its tracks again. My doctors tell me that there is no data to prove that changing medications would benefit me in any way, I'm on the best plan that they can devise. I trust them, but it sure is disappointing.

And while I'm having a good moan, I've got a cruddy viral infection going and, rats, so does everyone else in the family although they are all on the mend and I'm not. And yeah, did I mention it is -1F/-18C here at the moment without the wind chill? They're saying with the windchill it's -35F/-37C (does that convergence of temperature mean we're approaching absolute zero?). My stiff upper lip is frozen to the bottom of my runny nose. I wonder if the salt on a margarita would help that? Hmmm, there's a thought. The citrus juice might do me a world of good too!

I hope everyone is feeling better than I am at the moment! I'm off for a nap. Stay well, stay warm.
Jeannie McClelland
(Retired) ISN Director of Support Services
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#2 Sweet

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Posted 01 February 2011 - 06:20 PM

Awwww honey,

I'm so sorry. It sounds like a rough patch for sure. And YES BY ALL MEANS get out the Margarita's and salt! Just wanted you to know I'm thinking of you. :emoticon-hug:
Warm and gentle hugs,

Pamela
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#3 bowbec

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Posted 01 February 2011 - 06:30 PM

Jeannie,
So sorry you're not feeling well. I would defiantly try the Margarita…
Lots of Love,
Becky
Diagnosed with Diffuse Systemic Scleroderma May 2005
Raynaud's, GI, esophagus, skin and lung involvement.

#4 judyt

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Posted 01 February 2011 - 06:32 PM

Oh Poor Jeannie!,
I have been wondering where you were the past few weeks. I too, have been complaining about the tiredness. I went to my doctor. last week and her response to my complaint was - 'well I can't do anything about that what else is bothering you' so she heard all about what else!! I have been putting it down to the HEAT!! it was over +35C here yesterday, thank goodness it is cooler today.

I would have to conclude that owing to the vast variation in conditions we are living with that we just have to put it down to oldish age and our disease.

Chin up, feet up and just let the world go by until you feel better.

Love and hugs from Judyt

#5 debonair susie

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Posted 01 February 2011 - 07:24 PM

Oh Jeannie, it just isn't fair that your spoons are all bent out of shape and your body isn't behaving the way you'd like :crying: ; (of course, mine isn't complying either, especially with the temperatures we had today -17, not including the windchill).

I sure hope you have a fluffy, snuggly-footed onesie to wear to help keep those little feet and joints of yours warm, Girlfriend.
I'm also on board with the rest of the ladies...voting for the margarita too!

Sending warm thoughts and wishes for you to feel much better.
Special Hugs,

Susie Kraft
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#6 annkd

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Posted 02 February 2011 - 12:13 AM

Jeannie - I am sending positive thoughts and hugs your way. It really seems to be a very difficult time for a lot of us. Tomorrow I will be seeing my rheumatologist and I hope he can shed some light on why things have taken such a downward turn. please let us know what is going on. The GI issues are of interest to me and the strange fatigue/pain problems. Warm hugs you. - Ann

#7 uknlv18

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Posted 02 February 2011 - 03:53 AM

:emoticon-hug:

Hope things start getting better and you find many spoons!

Jean

#8 Joelf

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Posted 02 February 2011 - 08:08 AM

Oh Jeannie, I'm so very sorry you're feeling so lousy. :crying:

I know how disappointing it is when you're hoping that your Sclero issues are going to improve and they don't! :( Then to have a rotten viral infection on the top of it!.......

I would definately recommend the Margarita and hope that you're able to get plenty more new, better spoons. ;)

Best wishes

and

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#9 Buttons

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Posted 02 February 2011 - 10:11 AM

Jeannie, I would just like to say that I hope things start looking a bit better for you soon & wish you well.
:flowers: Hope these cheer you up a bit.


Buttons

#10 miocean

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Posted 02 February 2011 - 11:35 AM

Aw, Jeannie,
I hope you start feeling better but I would opt for a hot toddy instead of the margarita. (Or two or three!) We all have our ups and downs with the disease, mostly declines in things rather than improvements, unfortunately. Feeling sick is frustrating, depressing and discouraging for healthy people and compounded for us. Take this time to wrap yourself in a blanket and plop your body on the couch. Sometimes we need to just withdraw and hibernate for a couple of days.

Sending you some spoons, :flowers:
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#11 Amanda Thorpe

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Posted 02 February 2011 - 02:33 PM

Hello Jeannie

Take some of my spoons please!! The virus will go, my concern is the progressing fibrosis and gut issues. Just when we think we have a handle on scleroderma it changes and leaves us reeling once again. Please plateau again soon. :flowers:

Take care.
Amanda Thorpe
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#12 enjoytheride

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Posted 02 February 2011 - 02:49 PM

I'm so sorry that you are having to go through this. It's hard enough to have a major health issue without havng to deal with the normal nasties of life. Seems like fate ought to cut some extra slack. I know that when I have a virus, the world looks very black.
If you felt a little vibration right now, it's me sending "die evil germs" rays at those uninvited, pushy nasties who are making you miserable.

I hope that you are able to keep warm- so a quilt on the outside and hot soup on the inside.

I was reading a terribly negative book when a small bit of humor punched a small bright spot in all the gloom- I'd like to share it with you-
A very sick woman was in the hospital with a tray of food that she found very unappealing. Her sister said that she should try to eat the pear at least- it looked OK. The lady responded by saying that the hospital can make anything taste bad- "in fact they ought to just grind everything together in a kibble and serve it. They could call it "patient chow.""

Now as an animal person that made me laugh quite a bit- there is one famous animal feed company that makes dog chow, goat chow, rabbit chow, etc. I will never be able to see hospital food again without thinking "patient chow."

Please know that we all miss you and truly hope that you get over this bump soon.

#13 enjoytheride

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Posted 02 February 2011 - 02:51 PM

PS My Scottish uncle found a great use for bent, tarnished, solitary spoons- he flattened them out and made wind chimes from them. The silver made the sweetest sounds.

#14 martinisweetie7

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Posted 02 February 2011 - 06:15 PM

Hi Jeannie!

I hope you feel better soon!! Seems we all run out of spoons faster than we would like sometimes. It's only a matter of time before you have a huge handful again! The cold weather doesn't help either. We just had an ice storm in NJ today, and the cold is wreaking havoc on my body. Margaritas sound great! I guess I'll go clean my car off for some crushed ice :D


Warm hugs!! :emoticon-hug:


~ Jo

#15 Shelley Ensz

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Posted 02 February 2011 - 06:31 PM

Hi Enjoy,

You just solved the puzzle of Jeannie's spoons! She's enormously creative. She knits, she purls, she sews and bakes. Why, I'll bet every spoon she gets, she turns it into a craft of some sort.

What do you want to bet that her house is full to the rafters of wind chimes, textured spoon ceilings, spoon sculptures, weather vanes, spoon rugs and clocks and maybe even an electric cart made of recycled spoons! Yes, since she's buying them up like crazy and bending them into all sorts of shapes, I'm guessing all this is probably for a Sclero Spoon Fundraiser that she's going to be holding in the near future. I can see the invitations now: BYOS!

On a more serious note, Jeannie, I'm very sorry that scleroderma has taken such a toll on you this past year. It really couldn't happen to a nicer person. Usually things calm down sooner or later, and you are more than overdue for a "later" to come around. In the meantime, I'll keep sending lots of good thoughts your way. I especially hope that the "crud" makes a hasty exit. Being sick on top of sick is just the pits, isn't it?!

Here are some warm hugs and some 'please get a little better soon' flowers for you.

:emoticon-hug::flowers:
Warm Hugs,

Shelley Ensz
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Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#16 queenie

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Posted 02 February 2011 - 07:00 PM

Dear Jeannie,

I hope you are feeling much better soon. I know how rotten you can feel when you get a viral infection on top of everything else. take care of yourself and keep snuggled up warm and calm.
Love and hugs,
:emoticon-hug:
queenie

#17 Jeannie McClelland

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Posted 02 February 2011 - 08:03 PM

Thanks for all the good wishes! You are all correct in thinking the viral infection is what put me in the dumps - you kind of get used to all the other stuff, don't you? I've had a few sniffles over the last few years, but this thing is the pits, if I am still infectious I would probably classify as a weapon of mass destruction. :lol: There have been a few laughs though. My youngest border collie is very imitative. When I start coughing, she starts barking. When I start croaking, trying to talk, she takes over - again with the barking. Such a big help!

Spoon wind chimes - I love it! I'm definitely going to give it a try. In the meantime, I'm putting them on deposit in the ISN bank for anyone who also needs a loan.

You can take a rain check, but I'm sending everyone hugs,
Jeannie McClelland
(Retired) ISN Director of Support Services
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#18 Lynnie

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Posted 02 February 2011 - 08:37 PM

Hiya my favourite "war horse". I along with all of the "family" send warm thoughts and love to you! :happy-day:

Thankfully, our bad sub-zero temperatures have abated in the UK. My virus that began in September 2010 is just and I say that loosely is just about gone but my goodness, its taken a hefty toll on me. My chest is still a bit chesty in the morning, and my gut and chest took it badly. I still having constant bouts of oral thrush and bowel disturbances to boot!!!

I guess we have to have rough times...but why oh why do they hang about so long eh? :emoticon-bang-head: :crying:
I've sent you some of my pretty spoons to hang on your windchime so when the winter sun shines, the light they reflect will shine warm light on your face and make you smile to know you are not alone..ever. :VeryHappy:
:flowers:
get well soon
Lynn
x

#19 enjoytheride

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Posted 05 February 2011 - 12:45 AM

Just wanted to check on you- are you feeling better?

#20 Tawanda70

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Posted 05 February 2011 - 11:23 AM

Dear Jeannie,

Hate to hear all that you are going through... one thing that struck me, though. Your spoons are tarnished, so that means they are silver! And where there is silver... there is a lining :)

My spoons are plastic and I broke all of them this week. Sunday was 13 hours of competition dance for my little one, Monday had to admit my eldest daughter to the hospital for 9 days vomiting, dehydration and diagnosis was Abdominal Migraine. We finally got home Wednesday and on Thursday, I was unable to get out of bed. Stress is a monster for me. This morning I woke up with terrible chest congestion. Grabbing my stethoscope out to listen to what I sound like before I dart off to the doctor.

I am thinking of you and hoping that you get much reprieve from your symptoms. I will drink a margarita in your honour (after I take an omeprazole!). Warm hugs to you xxx