jefa

Sclero Summer Slumber Party

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Hello, everybody.You are cordially invited to attend our first annual

 

Scleroderma Summer Slumber Party

 

(No sleeping allowed!)

 

Come as you are (or how you'd like to be) and bring a friend.

 

Don't forget to bring something good to eat and any cool music and games. I think I have a twister mat around here somewhere. :D

 

We will kick it off live in Wednesday Chat (check your time in the Chat Forum).

 

See you all there tomorrow and here any time!


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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Way fun!!!! Thank you for hosting the Sclero Summer Slumber Pary kick-off, Jefa.I'm packing up for it now, and throwing some treats in the oven.


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

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

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Today was so much fun!

 

Thanks for the party-----Is it ok that I was in my pj's even though it was the afternoon out here?

 

KD


Diffuse Scleroderma Diagnosed March 2009

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Hi gang, I hope I'm not too late? anyone like to dance? :)

 

I've brought along some beer! :P

 

and I'm wearing my best, red satin, pj's!

 

 

Cheers everyone!

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Here is an edited version of our chat log from last night. Hope you enjoy!

 

 

Jensue: Hi jefa & Mando How are you both?

 

jefa: Hi, ladies! So nice to see you.

 

jefa: Are you wearing your jim jams?

 

mando621: Hi, I'm good.

 

mando621: No, it is just after lunch here and I actually got up early today.

 

jefa: Well, this is supposed to be the kickoff for our virtual slumber party, so it doesn't matter what you are actually wearing, in my mind it is jammies!

 

jefa: How is your finger mando?

 

Jensue: Are you referring to the slumber party jefa, if so I daren't say what I'm wearing ;)

 

mando621: It is cold in the house today, so I'd have to be in my big fluffy robe and wool slippers.

 

jefa: ha, ha

 

mando621: My finger is getting better I think. It doesn't have a scab, but it seems to be getting better

 

jefa: that's great to here. I heard hips responded really well.

 

Jensue: Have you had an ulcer Mando?

 

mando621: No, I'm lucky that way. Just a little cracking in the winter, which I had all my life.

 

jefa: She couldn't wait for an ulcer, Jensue - mando had to hack her own wound!

 

Jensue: That was daft Mando

 

mando621: I am now very "careful" with my new knives.

 

jefa: Well, I hope both heal well.

 

Jensue: I do like my knives to be very sharp

 

mando621: I seem to be getting more klutzy as I get older.

 

jefa: me, too, mando.

 

Jensue: I used to only ever use a small paring knife but since issues with my hands I like a 6 inch cook’s knife

 

jefa: I need a new six inch knife.

 

mando621: I have a set with really big knives. They should make it easier to get things done as long as the fingers stay out of the way!!!!!!!

 

jefa: I end up using three or four every time I cook or even make sandwiches.

 

mando621: I have a ton of knives. I use many knives too.

 

jefa: But I lack a good all purpose smaller one.

 

Jensue: I have my set of knives & hubby uses the others!

 

jefa: It has taken me many years to learn which knives work best for a purpose. Hubby picks up whatever comes to hand and destroys things.

 

Jensue: That's why I don't like him using mine

 

mando621: How are you doing in the summer? We have had the coldest July on record.

 

jefa: It is a bit hot today, but I am wearing fluffy slippers.

 

jefa: toes were freezing.

 

Jensue: Its been cold here today, wearing thick socks etc as well

 

mando621: We were camping last week and it was so cold, I was in pants and sweatshirt most of the time, and couldn't sit out in the evenings.

 

jefa: I got a really nice knife sharpener - the kind with two ceramic rods stuck into a wooden block at angles. Very good.

 

mando621: I've been using my knives cooking up a storm lately. I'm cooking for two this week since the kids are off to camp.

 

Jensue: Oh I have one similar to that & it's excellent

 

jefa: Hi, lyndylou!

 

Jensue: Hi lyndylou

 

Jensue: & KD

 

mando621: Hi

 

lyndylou: hello every one

 

jefa: Hi, Kathy!

 

jefa: Good to see all of you.

 

KD8410: hi everyone

 

jefa: What did you bring to eat? I'm starving.

 

KD8410: you all too

 

mando621: I've got M&M's

 

Jensue: cheese & biscuits, jefa

 

KD8410: I have a pot of fresh coffee

 

lyndylou: I’ve just had dinner

 

Jensue: I hope you like blue cheese

 

jefa: love it. Ooh, sounds good. I have not bought any cheese since I started dieting, so don't tell anyone.

 

lyndylou: I’m making cheese and onion bread

 

Jensue: Do you use a breadmaker, lyndylou?

 

jefa: sounds lovely, lyndylou

 

jefa: pass some of that coffee. Peanut butter cookies anyone?

 

Jensue: Are we allowed some red wine jefa, or is it too early?

 

jefa: Yep. I will save mine till later, Jensue

 

KD8410: how is everyone feeling?

 

jefa: have been a bit tired this week. walking a lot, but slowly dropping the pounds.

 

KD8410: aww, sorry jefa. Good job on the walking!

 

mando621: I'm working on cleaning out my sewing room. I almost can see the counter tops now.

 

Jensue: my hip joints are bad this week - did too much while away last week

 

jefa: congrats on the progress, mando.

 

mando621: I am at my high weight; I usually gain weight in the summer.

 

KD8410: haha mando, I was thinking about getting started on my Mount Deskmore today, cant see my desk either

 

jefa: I am still not finished sorting out my office. I had to replace my desktop pc - it finally bit the dust. So I bought an old refurbished one online.

 

mando621: I'm going to be donating about 6 bags of material to the quilting guild.

 

Jensue: I have lots of trousers to shorten for the holiday next week

 

KD8410: how rewarding in 2 ways mando

 

KD8410: sorry about your hips Jensue

 

mando621: Yeah. I am really trying to clear out things, and I'm totally into giving it to someone that can use it.

 

Jensue: One day KD I will listen to my body & do a little less!

 

KD8410: haha, Jensue

 

jefa: I have had a hard time keeping myself restrained from doing too much since I started exercising.

 

Jensue: You all know what I mean - pacing oneself?

 

jefa: yeah, exactly.

 

KD8410: I do

 

mando621: My hips were bothering me for a while, and lately they are better. I don't know what I've been doing different. Oh yeah, not sitting on the stool stripping baseboard, Ha Ha!

 

jefa: ha, ha!

 

KD8410: I felt soo good this morning -- already burned up most my spoons!

 

jefa: my hips are the biggest problem, too.

 

mando621: Today my toes and ankles were the worst. I took my dog for a walk and by the time we got home they were more limber.

 

KD8410: lyndylou how are you feeling? Got any spoons left today?

 

jefa: the dogs or your ankles?

 

mando621: HA, the dog went to sleep. I went on to do three loads of sheets and towels.

 

KD8410: :}

 

mando621: All that from camping

 

Jensue: I go to Madeira on Monday for two weeks - warm sunny weather I hope

 

Jensue: So I have to pack which I hate thinking about what I need to take

 

mando621: I hope you get warm weather. Once we went to the Bahamas. It was unseasonably cold and I froze the whole time.

 

jefa: nothing worse than going some place that is supposed to be warm and its not.

 

lizzie: hi all

 

jefa: Hi, lizzie

 

mando621: I hadn't packed for that weather, and I was miserable most of the time.

 

Jensue: jefa I must admit to quietly smiling at those having to put wet tents down last week! It was so good having the caravan

 

KD8410: hey lizzie

 

jefa: good to see you.

 

mando621: Hi lizzie

 

jefa: I have lived through more than my share of camping tales of woe. We even got stepped on by a bear once.

 

KD8410: oh my!

 

mando621: I'm lucky my index finger is up to typing again. It was not fun trying to type without it.

 

jefa: my typing suffers when I have achy joints. The reach is off, so I am forever hitting the wrong keys.

 

lizzie: my fingers function fine except when it comes to typing

 

jefa: good thing I am not a pianist.

 

KD8410: I am finally getting rid of the last of the dead skin under 2 of my fingernails from the ulcers last December, thank goodness, it makes them look dirty

 

mando621: My middle daughter is at band camp and loving it. She is playing her oboe

 

jefa: that sounds like progress, kd.

 

jefa: my grandson just got back from his first week away at Scout camp.

 

Jensue: My daughter went to Belgium last week with the Youth Orchestra

 

jefa: He was really excited to have discovered spam!

 

lizzie: Never had an ulcer on the finger tip yet- touch wood- just on the side of my finger

 

Jensue: She had an excellent time

 

KD8410: still have the oddest sensation when using my index finger pad, got very deep there but thrilled to be healed

 

mando621: I was a GS leader for 10 years. I don't have the energy for it now.

 

jefa: no energy for much these days.

 

mando621: I miss all the Girl Scout songs. I have been in scouting 27 years.

 

jefa: you could always invite a few oldies over for a songfest.

 

lizzie: Think camping or just being away without the parents is great for kids- I remember how much I loved guide camp

 

mando621: Problem with that, we went by camp names so I don't know how to contact anyone.

 

jefa: I used to love camp songs. I still have a wee book of them I pull out now and again when nobody is around to hear me.

 

KD8410: my dad went to a camp in the 1950's called idrahaje

 

mando621: When I'm driving a long time and need to keep alert I start going through all the camp songs I know.

 

Jensue: My hubby still sings some of the scout songs he learn

 

lizzie: gingganggoolygoolygooly wtacha ging gang goo ging gang goo- all togther now

 

jefa: yeah, we used to do that too on road trips.

 

jefa: that was a handful to type!

 

lizzie: not quite accurately typed though!

 

jefa: I love the rounds.

 

Jensue: I'm afraid I was never in the Guides

 

Jensue: I used to be in the local swimming club instead

 

mando621: Rounds are impossible if you are by yourself. Ho young rider just doesn't sound the same.

 

jefa: We used to have one group singing Keep the Home Fires Burning and another singing Long, Long Trail at the same time. They were different melodies but worked really well together.

 

lizzie: life was so simple before mp3 players- bet it’s a hard job to get kids singing these days!

 

jefa: yeah. I tried to teach Birdy to sing along with me, but he doesn't come in at the right place. :)

 

mando621: There are quite a few of those. I miss all the old songs. At camp now, they only like the "funny" fast ones, not the ones with meaning.

 

lizzie: I used to love the tuck shop at camp

 

mando621: I guess it shows that I'm a product of the late 60's and 70's.

 

KD8410: I don’t remember any, just the Spanish songs from bilingual school class as a kid

 

lizzie: was just reminiscing about the sweets we used to eat with a colleague the other day ( and regretting the effect on our teeth)

 

mando621: Anyone remember purple candies that taste like lavender or violet?

 

jefa: oh,yes - they are vile. My stepdaughter likes them.

 

lizzie: parma violets - and cherry lips

 

mando621: I wonder if they still make them. I don't remember what they are called.

 

jefa: Hi, smac.

 

KD8410: hi smac

 

Jensue: parmaviolets

 

lizzie: think they do

 

jefa: good to see you.

 

jefa: yes, I have seen them online.

 

mando621: they were in a specialty shop with "bridge mix" is all I remember.

 

smac0719: hello all.

 

jefa: there are a bunch of online shops that sell retro sweets.

 

smac0719: I am trying to remember how to do this as it's been a while

 

KD8410: how are you smac?

 

jefa: well, at least you are typing in the right place.

 

lizzie: my sad old teeth can't cope with them these days- neither can the waistline

 

jefa: you can get an avatar by clicking on the tiny masks next to the musical notes.

 

smac0719: I am ok. quite a bit fatigued today though

 

smac0719: thanks jefa

 

KD8410: I hate fatigue, more than joint pain

 

mando621: my arms are getting fatigued at this moment. My arms get this way when I'm teaching too.

 

smac0719: me too kd. at least you can take something for pain. I havent found a remedy for fatigue

 

KD8410: I styled my hair today and had to put my arms down and rest a few times

 

Jensue: I totally agree lizzie

 

lizzie: hi amanda

 

jefa: hi amanda!

 

KD8410: hey amanda

 

jefa: good to see you.

 

amanda23: hello

 

mando621: KD, that is how I feel at times.

 

smac0719: hello amanda

 

KD8410: sorry for you too mando

 

amanda23: busy here tonight!

 

jefa: having problems with my shoulders when I do my exercises.

 

lizzie: keeping dry out of the rain

 

smac0719: I used to have a lot of muscle fatigue that prevented me from doing my hair.

 

smac0719: I wore hair extensions ans wigs during that time

 

jefa: yeah, me, too, smac. I had to change my hairstyle as a result.

 

KD8410: I was worried about my joints yesterday, having a hard time getting up after going potty................silly me, forgot to take my pills!

 

mando621: Have you found anything to help with muscle fatigue? I am not looking forward to classes beginning in a month.

 

KD8410: I have worn my hair in a barrette for a year or so now, who am I trying to impress anyway

 

jefa: no help there.

 

lizzie: Find the muscle and general fatigue comes and goes-but no remedy to suggest

 

smac0719: well either the increase in my metho worked or it went away on it's own

 

jefa: I am now wearing it pulled into a pony tail in the back.

 

KD8410: I have not but rheumatologist said the methotrexate might help my fatigue when I start it

 

jefa: makes for a cheap facelift.

 

amanda23: I can't do ponytails

 

lizzie: Think I have ached more since on the MTX but perhaps due to all the wet weather here

 

mando621: I wear my hair short, and most days I let it air dry.

 

KD8410: I don’t have enough hair for a pony tail, super thin and fine

 

lizzie: MTX also makes me feel completely knocked out for 2-3 days- just feeling better when time to take it again

 

jefa: I was wearing it short, but found it was too much trouble taking care of in the heat. My hair goes all frizzy when it is damp.

 

mando621: I find I drink way too much tea and coffee trying to get a little more energy.

 

smac0719: I felt that way too

 

lizzie when I first started taking it. I don’t have that effect anymore

 

Jensue: KD mine is very fine & won't be tied or anything

 

amanda23: short hair is more work than long

 

jefa: well, caffeine is a false upper - it can actually cause fatigue.

 

KD8410: yes mando, I do way too much coffee lately, so gave myself a cut off of at 4pm

 

smac0719: I wish I could drink coffee. had to stop due to palpitations

 

lizzie: Oh good smac- I’ve only just reached full does so perhaps will soon get used to it

 

jefa: plus it messes up your fluid levels.

 

jefa: I have been drinking decaf for about three years now.

 

mando621: My short hair is easy. Let it dry, spray on a little hair spray and tousle. Luckily my hair is straighter when it is short.

 

amanda23: the methotrexate knocks me out for 1 to 2 days also

 

smac0719: I have notice great improvement since moving to 25mg of the metho

 

KD8410: nice mando

 

lizzie: MTX makes me very moody as well amanda

 

amanda23: I knew it did! It’s not just me!

 

lizzie: I fell really irritable- like PMT

 

mando621: I sure don't need any more cause to be moody!

 

jefa: It is so nice to have a full house tonight. Glad you all popped in.

 

 

Editing the chat log is a real bear, so I will stop here. I had to cut most of the emoticons, as we seem to have a limit on these posts. We also discussed roof repairs, SSDI forms, family news, upcoming procedures and dental work. We continued to discuss weight management and exercise with discussions of how to get rid of bingo wings and double chins, the irony of skin tightening not happening in the right places, using Velcro wrist weights instead of dumbbells (because of sclerodactyly), swimming, training for marathons by starting with a minute at a time, the latest Harry Potter film, problems getting life insurance, the relative benefits of sugarless gum, the promise of non-fattening chocolate (consensus: we’ll believe it when we taste it) followed by our version of The Walton’s goodnight ritual.

 

 

Hope you will all get the chance to experience a chat session soon. :D


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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Oh I enjoyed reading that! sounds like you all had a ball! :) Thanks for posting it here. I look forward to working out how to join you all next time! I still haven't had the scope! waiting, waiting, waiting! I hate waiting for something that I'm dreading! :unsure: I let you all know when I find out when it is! I hope you're all doing well?

 

Best wishes and hugs everyone :)

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