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Everything posted by jefa

  1. Hey, girl - of course you were missed! I've been counting the days. Looking forward to seeing the photos.
  2. I am passing on a note from Julie and Roger Ford, known to us all as Birdman and BMW (Birdman's Wife): It has been a while, I read often but we have been so busy lately. Roger and I leave today for Duke. He is going to have a mini allo stem cell transplant. I have created a Caring Bridge page for friends and family to read the journal and follow his progress, visit the photo gallery and write us a note in our guestbook. Hope you are all well, Julie (BMW) The link has now been added to our Personal Stories Page: Birdman: Roger and Julie Ford, Caring Bridge. Birdman and Birdman's Wife are regulars on Sclero Forums. Stay updated on Roger's pending stem cell transplant here.
  3. 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
  4. I have peanut butter cookies and cold milk to share. And I am sitting in chat all by myself - some company would be appreciated in there. :D
  5. Let me add my welcome, Kathy. I didn't have a very serious problem but I had some stomach bleeding caused by continuous use of prescription NSAIDs for nearly six years. The bleeding cleared up right away after I quit taking them.
  6. 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!
  7. Good grief, woman! I am the worst at cutting myself and one thing I have learned over the years is how important it is to have a sharp knife, especially cutting something resistant like a melon. It seems like we were talking about using some kind of finger protectors in chat a few weeks ago. Like silicon tips. We spent ages trying to find the right word for them and still didn't agree. I once caught the end of my finger in a piece of industrial equipment and sliced off the whole pad. I drove myself to the hospital and they stitched it back on with a huge number of tiny stitches. The skin turned into a parchment looking thing eventually, but it acted as a protector and the pad regenerated, fingerprint and all, though it was incredibly sensitive for years.
  8. When it rains, it pours. Sometimes it just seems like the umbrella is just not big enough. If hugs were $$$ you would be rich, sweetie. :D I know it's hard at times, but things do seem to work out for you most of the time, one way or another, judging from some of your posts and blog entries. Hopefully something will go right soon. Don't give up on the child care provider payment. People who work in these offices are just trying to follow the rules, but sometimes if you get the right person at the right time with a sweet smile and and a tear or two, you can persuade them to change their mind.
  9. jefa


    Hi, Ann. I've had two endoscopies, but nothing involving stretching. Hopefully someone will be able to jump in with some relevant experience. Here is a link from our medical tests page which may be informative: Esophageal Dilation Esophageal dilatation is the technique used to stretch or open the blocked portion of the esophagus. Jackson Gastroenterology
  10. Hi, Eddie and welcome to the forums. I'm glad you found us and hope interfacing with the lovely folks on the forum will be a big help to you and your wife. You raise some valid questions, but there are no answers that are right for every situation. We have members all over the globe and Raynaud's can be an issue in any climate. I live in Scotland where it is damp all the time and very cold in the winter. Yet some of my worse Raynaud's attacks have been indoors because of air movement on exposed toes or fingers. I would suggest that you both choose a place that you can be happy in together for all of the reasons that you mention, then concentrate on finding ways to make lifestyle adjustments to cope. Here is a link to our very informative page on Raynaud's. In the meantime, please make yourself at home and feel free to ask any questions you can think of.
  11. And thanks so much to you for all the work you do interfacing with the two groups of technical people who solve and/or cause these issues. I understand the hours and hours of work you put into the fine tuning of the code to make everything run so smoothly for us in the forums and on the main site. It must be frustrating to have it all go belly up whenever the company decides to upgrade or change something. I just want you to know how much we all appreciate what you and Janey do to keep the site going.
  12. It also appears that several avatars are missing. If you have recently uploaded a new avatar and it isn't showing, try uploading it again.
  13. How wonderful for you. I am so happy your parents came through for you in this way. :D
  14. Hi, Sally Forth -- what a cool and witty name. :D It is heart warming to read of so many of you working hard to stay active and finding such great solutions. I can't add anything to the wonderful advice given, but I look forward to getting to know you better.
  15. Oh, I love the extended family, too. I tend to think of the in-laws as 'realies' -- in fact, I think of the kid, the husband and/or wife and the couple together as separate entities. Jeannie, I love your new avatar. Tell us about your own personal wildlife preserve.
  16. Just a quick note for clarification. The brand name Boost has been edited (as are most brand names). In the United States, Boost is the name of a nutritional supplement, whereas in the UK Boost is the name of an energy drink containing Taurine and Caffeine. Nutritional supplements can be useful in this context of this thread's discussion, but energy drinks which contain stimulants can actually suppress the appetite further. Additionally, they may cause problems with blood pressure and add to reflux issues. It is best to consult with your own nutritional health advisers.
  17. Best of all possibilities for you both, my fine feathered friends. :D
  18. "Thankfully the thingy turned out to be a type of morphea." Did you ever think you would be making a statement like that one day? :D My user name jefa (pronounced Hay-fa) is the Spanish word for chief or boss in the feminine form. It was given to me by one of my assembly crew when I was working in manufacturing. It started out as a bit of sarcasm, but it has stuck with me all of these years. My husband sometimes calls me 'jefalump' as I collect elephants.
  19. Good post, Jeannie. I have really appreciated these Quick Bytes. Since you mentioned passwords, let me give my two cents. I have been working with computers and computer users since the 70s and have been amazed at how obvious some of the password choices have been, often even the word password itself. Considering that memory problems are strong among us, just remembering a password can be a real problem. But it makes a lot of sense to use care with passwords. A lot of programs won't let you get away with an easy password these days. A secure password should have at least eight characters, at least one of which is a number. Since most passwords are case sensitive, you can make it more difficult to guess by making some of the letters capital or replace letters with numbers which look like letters, such as using a 3 instead of an E. You can use other characters such as punctuation. You could spell a word backwards or use the first letters of a phrase that means something only you will think of: My friend Paula has 16 pairs of purple socks. = MfPh16pops (now, who is going to guess that?) And you shouldn't use the same password every place you go. Once someone has figured it out, it's all to easy to go searching for other places to use it.
  20. I am a woman of a certain age who has learned to make my fashion idiosyncrasies into a statement. Who says you can't wear sandals with socks? Since I lost the fat pads on the bottom of my feet, I have been wearing fluffy thick socks. Now summer is here, I have purchased a pair of walking sandals with velcro straps at the toe, across the top of the foot and around the back of the heel. With this level of adjustment, they cushion my feet perfectly and make walking a possibility again. I am going out this morning to pick up my new glasses which I selected from the men's section to get a pair that feel right and give me a good field of vision. I will be wearing my purple socks with my new sandals and feeling great about it. :D
  21. Hi, Connie. Let me add my warm welcome and a big hug. Thanks for taking the time to give such a thorough update. You have definitely found the right place for information and support. This is a great group here. Keep us posted on your progress. As for the keyboard thing, you might find that a touch typing program would be fun and useful. You can find software that includes little games to keep your eyes focused on the screen. I had difficulties at first as typing was a big part of my job, so my employer bought me an ergonomic keyboard (which is impossible to use if you don't already know touch typing) but when I later had to retire, I discovered that typing was much easier on my lap top keyboard which is flat. We all find ways to adapt.
  22. I have also had a problem since my teen years of orthostatic hypotension, even during times when blood pressure was higher (e.g. during pregnancy). When I was in boot camp I had to be moved to a lower bunk because at reveille I would scramble out of bed, scurry to the line and faint. I just have to remember not to get up to quickly and if I get dizzy, raise my feet above my head to allow the blood to flow back into it.
  23. Kathy, glad your appointment went well. I look forward to hearing about your specialist appointment on the 13th.
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