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sandra

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Everything posted by sandra

  1. Scrapple? Jeannie! Yiker's don't want to go there. I can't make it to the picnic this year sorry kinda uhhhhhhhhh busy :wacko: Hmmmm doin uhhhhh organizing the uhhhh house, yah ya that's what I am doin, uh huh! I am very very busy, busy, busy. Sandra :P Uhhh, PS. I will let you know when I am available K? :bye:
  2. Oh Boy, thats me! I am one of those people forsure! I have a photogenic nature, and when something is missing I notice very quickly that something is missing and wonder, I am weird that way :wacko: and always have been. Along with being nosey too! Now that I read this, it all makes good common sence! :blush: Grateful to see this post, I will stop the " Where are Yoooz?" :P Okee dokee, Yackatchaz soon, Sandra :bye:
  3. YAWN... :emoticon-insomnia: After the clinic , I hope your son will get some quick releif! Then all 3 of you can have a well deserving nap, oh you poor thing, I just don't know how you do it, I don't have children and I can't imagine how over exhausted you are, I give you Amber a Five Star award! ***** You are a great Mom Amberjolie :) its one thing to be battling your disease, but being a Mom is a whole new ball game added into the scenario! You always find the strenth and I give you sooo much credit & respect. You are amazing in my books! :emoticon-hug: Wishing comfort for the 3 of you! Take care Snookums, Sandra
  4. Greetings Jackie, Oh boy , Jackie, to me that sounds like a disturbing recomendation :wacko: , if it were me I would surely Take Sheryl's opinion along with mine,I also would not even remotely consider Lap Band surgery, Scleroderma has many complicating symptoms, I now recently have digestive complications, and I don't know your situation, but Jackie if it were me I would look at the big picture, if sometime in your life, Sclero threw you gastric digestive problems (as it has done to many people) I could not imagine the distress having this procedure would cause down the road for you. I would not jump at this decision if it even has a remote chance of compromising my future health and care. I would first get a Rhumetologist who specializes in Scleroderma Patients opinion, and I would read everything there is related to Gastric & digestive complications, right here at Sclero.org with "real stories" from people before I would make a decision :excl: I am so happy you brought your concerns here Jackie before making your decision, I am sure you will get alot more opinions, so keep checking Ok, I do care about you and want to help anyway I can. We all care about you :emoticon-hug: Stay Calm, Sandra
  5. Hello Mary Alice! I am doing the happy dance for you and your news, the best part is you're diagnosed and confirmed "Limited Scleroderma". Hey, its better knowing, than not. I too have visited Johns Hopkins just a few months back and was also confirmed with Scleroderma and overlapping things. I could have taken the news two ways, I chose the positive route, and I am learning to live with my new partner "Sclero". Like any new relationship, there are some pitfalls, but I quickly learned to accept it , live with it and make the best of it. I have learnt to avoid all stress at all cost. "Sclero" is not a happy camper when it comes to stress! :angry: The most positive thing I learned at J.H. was people can live a full long life. The doctor had a patient 92 years old. I also made a lot of adjustments in my lifestyle and daily routine, to accept and work with Sclero as comfortably as I could make it. I also quickly learned that it was so much easier to deal with each day as it came, rather than storing all the complication and symptoms in my head. It became so mind boggling and rented to much space in my brain- So not worth it! I better close for now, almost writing a novel! We are all in this together my Friend! This group is a GREAT support line. Positive Sandra :bye:
  6. :happy-day: HAPPY BIRTHDAY JANEY ! Maybe your having GREEN TOMATO CAKE? :barf: :excl: HAVE A HOOTINANIE TODAY ! :excl: Sandra
  7. Hi Ozzie! All is not lost girl! You will get answers in January for sure - it's a Scleroderma clinic! By the way my throat is always sore and the roof of my mouth and inside right cheek almost always has red patches- they are surface patches no bleeding or ever breaking the skin, just there! But the throat is always mildly sore, like a cold is coming on but never gets here! Some days my tongue feels rough like sandpaper against the roof of my mouth. My results were Discoid Lupus for mouth and throat and eyelids and upper lip. But the rest of me is another story! :wacko: Overlapping chaos! Ozzie, there is a positive side to seeking a second opinion. You will likely get a diagnosis and then a medical plan, I would bet, in January when you see the Scleroderma expert. I felt just like you not to long ago! And when I finally got diagnosed (and it was a long road), a medical plan was put in place and I actually started to feel better and in control again, bar a a couple of hurdles - minor med changes. Every time you feel a new or strange symptom jot it down on paper -take the list with you- give it to the doctor, he will read it and get a good idea where to start with you. He will appreciate the list! Stay positive and get comfy until January. The Forum is a great place to come and vent or get a hug when you need one. Your Friend Sandra
  8. Deb & Hubby & Darling children I can't imagine being you right now. A candle is lit with a doggie cookie beside it.. Buster's is getting lots of loving hugs now, from his birth Mother... You have a great husband Deb, Let him help you. Your Friend Sandra
  9. Welcome Tamara! Welcome Barb! Hurrah!! 2 Newbies I am thrilled you found us, this is an awesome group! Whether your Up :D or Down :( , want to share a laugh and even pick up a new recipe! Your not alone here, we all support and care for each other, also a lot of medical information, all you do is ask. I was a newbie a couple of months ago too, All my new friends here supported me , and now I am back full force with a strong positive mind. Huge hugs to you both Barb & Tamara :emoticon-hug: Stay warm Sandra
  10. BIG WELCOME MOLLY! :emoticon-hug: Sandra calling, so happy you found us, My world got a whole lot brighter when my Doctor told me about this caring and supportive group, I went from "down" and lost :( and did a complete turn around with everyone's help & support here, they lifted me back up in a hurry, I have so much more knowledge now on this disease, and feel secure, they make me laugh , some times cry :sick2: , teach me how to cook strange things!But most of all Molly this is the place for top notch support, we all care for each other, I love Sclero.org in a quirky kinda way - its kept me together, I now do the best I can every day,where as before I had lost hope. This is the best medicine for me! Stay Comfy Molly. Sandra
  11. Hello Kiwi, I have Mal Absorption, and anemic , very low iron, had ongoing infections, Fatigue,Dizzy lizzie, my results after truck loads of tests was "Watermelon Stomach" That may not be you though, If it were me,I would insist that I got a diagnosis, and beleive me it took 5 different specialists to figure me out, with persistance I know have great Doctors that understand my overlapping conditions, Don't give up Hope Stay comfy Kiwi, Sandra
  12. COOL IT WORKS! THAT IS THE BEST TIP EVER!!!!!!! :emoticons-yes: :happy-day: THANK_YOU BUCKET LOADS!!! Wowed Sandra
  13. You guys kill me :VeryHappy: I write direct to all manufacturer's with my sweet letter, why not? Don't we deserve a break to get relief and comfort- YES I e-mailed directly to the electric blanket company too, went to store and read the tiny manufacturer tag and wrote down the name ran home fired of my "Sweet Letter" and I paid a discounted price for the one for my Queen bed and they threw in a electric chair warmer pad and a letter of good wishes, I was thrilled! I could go on and on- My walking shoes 2 for 1- thermal blankets for the RV, Its honest, our doctor say "be comfortable" Right? so write it down that the Doctor recommends it. Ok I will shut my yapper now Smiles n Chuckles Sandra
  14. Hey Waxers, Tell your friends to save them, fill kitchen sink HOT water add dish soap and stir a minute- rinse well- then dry and USE. Later Sandra
  15. Hi Waxers! Ok I ve been watchng this post since started, my sister owns a spa & Salon buisness, heres her tips, go to the website of the manufactuer thats written on your wax bar- ( I did and this worked) Write a sweet "help me letter" My doctor recomends I use this to help my hands from crippling with my Rare disease "Scleroderma", is there a place where I can purchase at a discounted rate, Your wax helps me alot! Please & Thank-You Miss Bah blah Ba They put my name on there system and now I e-mail my order and pay 1/4 the cost of retail! Then you get your Wax machine - before you put wax bar in , DON'T throw out old panty hose! Cut the legs of mid thigh - tie a not where you cut each leg off stretch the waist around top of pot rim NOW put the wax bar ontop the panty liner turn on and wait 2-3 hrs, AHHH use and enjoy! Leave in for up to 5 uses,It won't burn- when you want to change the liner,turn Off and Lift liner out and chuck it in the garbage- Leave the wax in pot to harden, Now don't put a liner in till the next use. put liner waist around edge same as before, but this time your hand will push it down after wax is heated -WALA! My Sister said if your hands are clean going in, you should'nt have to chuck it out often just add a new bar when it gets low. And I get wholesale for the little handwarmers for your pockets to each winter I order a case of 80- huge discounts- always send Manufacturer a sweet letter. Happy Waxer Sandra
  16. I love a good LAUGH ! me and my Hubby watched "Duplex" it was so hilarious that we had to stop it and keep re-winding we laughed so hard that my dry eyes teared! and another hoot was "Grumpy Old Men" !! My first, scariest movie a hundred years ago, that I lost many a nights sleep over was "The Birds" and then the "Exorsist" Lastley "Thelma & Louise" Love all Steve Martin- Kathy Bates - Sandra Bullock- Maybe you've seen something that sounds good and I would like to watch... Smiles n Chuckles Sandra
  17. Hi All' Well out came the biopsy stitches today, Results are "Discoid Lupus" is it ever going to stop , pick -up 2 new prescriptions Monday- Plaquinal & (Clinacin??) forgot the real name of that one! I will know Monday, how is it possible to have sooo many over lapping things!URRRRG- just one of those days I am having..its just all too much- tomorrow will be better. Later, Sandra
  18. YOWZERS BAREFUT! Ok calm down don't panic, you don't need more stress! Now heres an idea- Did you ask your Doctor to write a "Medical leave of absence" and apply through the company you work for? In canada I think they continue to pay you 75% of your wages for 1 year, hopefully someone else can add more facts on this. Also here is another idea, its still work but at least your home with your children, phone people that have ads in the local paper that have child daycare in there home, get there daily rates, and you put an ad in the paper and do "In Home Daycare" I here there is good demand, I guess it depends where you live.. Say 7:30 am - 6:00 pm I would take 3 years and up- No diapers or lifting. They can bring thier own bagged lunch- and have a set "Quiet time around 1:00 put on a movie -close the curtains and relax for a while. Just a thought, I knew a friend who did this and she thought it would be alot of work and it was,nt so bad , the children played together usually all morning. Hmm just a thought. I will keep my thinkin cap on for you Sandra
  19. Hello Hippychick B) Glad your here! My opinion is that bloodwork can change continually one time yes next time no, everyone is different, scleroderma is very complex, I have a permanent Lab card to have bloodwork monthly, sometimes blood looks good and the next month its off the chart! There are so many different tests (not blood alone) that can confirm a diagnosis. Maybe someone else can help your concerns better than me, I usually take advice, Glad you came here I am sure you will get answers soon. Stay calm, we are all here to help eachother. Like your cute avitar! Stay in Touch, Sandra
  20. Hi All Sandra here just updating about eyelid Biopsy- I don't get the sutures out until this Friday and the eye Dr. office called me in to have another test relating to the biopsy I go in 2 hours- Hmm I wonder whats up with that- I will Update after I see him this morning... Later Sandra
  21. Hello KD I know she is 84, good for her wanting to be up on the technology! I don't know how active she is, maybe when she is out shopping she can use the local library computer they usually have them free use, they will help her get started and teach her how to use it , and probably have great info on cheap or free Internet for "Seniors" Oh another thought, I am sure the local comunity "Seniors Center" can help, Good Luck, give these 2 a call, OK Say Hello to Granny from us! Sandra
  22. Hi Kathy Yes I am very interested too! Post us the scoop! I go through Dizzy lizzy spells 2-3 times a day and have been for months! I will be walking down our hallway and literally stop and hang onto the wall for a minute just to get my bearings, or I get out of bed (maybe too fast) and head staight into the wall! Last time I saw my Specialist he said we would discuss weekly Intraveinus with Iron at my next appt.... I guess its wait and see time, I will post my doctor's recomendarions too. Nice to meet you Kathy B) Dizzy Sandra
  23. Ahh Amanda! You had to ask! When you have severe acidic Diarea, after the first week there is not much skin left down near the "corn hole" So for releif you put this bowl thats designed to fit the toilet , fill it with warm water & some epsom salts and sit in it for five minutes- releives the burning & helps promote healing. Can be bought at most drug stores, and can fit in most bathroom cabinets. Comonly used after Hemoroid sugery or for people who can't reach this area to clean. Its actually really helps, Hopefully you won't have to go there Amanda. Wipen again, Sandra
  24. I just want to know with all the ACHEY writsts and ankles - knees hips etc. out there, what is the long term appearance, I don't know and I want to know honestly. Because the aches are continual and it must be doing something in there?Right? I will have a good chat with my Sclero specialist when I see him next appt. I am strong and not asking this to worry myself, it's more of a worry not knowing the "could be" long term effects or hearing from people who have had this long term. Please I welcome your feed back. Thanks everyone always appreciate your opinions & advice. Achey Sandra
  25. Hi Charliehorse & Sheryl Ahhh the wonders of stress, I just had a weekend with family, my sister & husband came to stay with us for 2 nights, Now I am paying for it, Naturally one would think "stress is only related to negative situations :angry: " Well that's wrong, even happy occasions, excitement, anticipation :D can cause our symptoms to go Wingy for a while! I am achy- Diarrhea-exhausted, I slept all afternoon yesterday and for the first time in 3 months I slept through the night (woke up at 6:00am today! Thats one symptom I welcome! :emoticons-yes: Sheryl gave great advice, I just hate the idea of getting ready to go for a walk, now I try not to think about it, just get out the door, once your out the door- It really does wonders and you begin to enjoy it! Its just getting out of the house, thats the hard part, at least for me. Its the same thing with a hot shower or bath, once your in its WONDERFUL & you feel great afterward! Get the energy and get in! Turn Stress Around, Sandra
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