Jump to content
SCLERO.ORG
Sclero Forums

Jeannie McClelland

Members
  • Content Count

    1,698
  • Joined

  • Last visited

Everything posted by Jeannie McClelland

  1. Hi everyone, it's time for my biennial check-in. I do these for newer members who are learning to cope with a frightening diagnosis. Let's see, it's been 11 years since I landed at the Center of Excellence where I was diagnosed with systemic sclerosis sine scleroderma (also called limited), pulmonary hypertension, and interstitial lung disease. So how am I after a decade plus of SSc? Great! I've developed supra ventricular tachycardia, had scary few months when my bone marrow was producing very few white blood cells and neutrophils, and the GI issues have all progressed, but on the
  2. I am at 6.5 years of participation in the PHAROS study and have donated blood to several genetic studies - any participation in any way is so valuable. As Miocean pointed out, even if one doesn't qualify for a clinical trial, there is still a way to give researchers data that might someday lead to a cure.
  3. Pictures of Aisla? If I can ever get her to stand still or figure out how to get one from my non iPhone to the computer! This pup moves like greased lightening.... She came to us having been an outside dog living under a porch or maybe a dog house. She had gorgeous sun streaks (my hair never looked so good), except for the top of her head. Can you say over-processed peroxide blonde? Give us another month of being inside more and the last of the puppy fluff gone, then I hope to have a photo of her in her permanent, glorious russet coat. Dolly Dumpling is gorgeous, Amanda! Mind you, I'm par
  4. Woohoo!! Aren't grandkids just the best? Congratulations!
  5. Hi Steve, I'm really late joining the thread, sorry! First let me assure you and your wife that there is life after the diagnosis; this year will mark my 8th anniversary and I hope for many more years. My daughter is also a pharmacist, so I m pretty familiar with the working conditions. It's my understanding that a pharmacist can't be forced to give injections although they may be required to undergo the training. I would simply say I wasn't comfortable and didn't wish to risk the liability issues. Standing on concrete floors - ouch! My recommendation is for her to acquire some of the
  6. Buckets of treats would be very welcome, she's like a gannet - eats anything in sight. She's Aisla (eye-la)' another Scottish name. The vet's staff were groaning when they realized we had stuck them with another 'it doesn't sound like it looks' name, they wanted to change it to Lucky! :)
  7. It's a new puppy! (No virtual baby showers, please.) Well, technically she is probably a pre-teen at 9 months old, she certainly acts that way. We adopted her from a herding dog rescue agency 10 days ago and wow, has she livened up the place. She's a Border Collie/Australian Shepherd cross and will definitely get me up and moving as her exercise requirements far exceed mine (and those of our Senior Dog). It's going to be fun to train her to be a responsible trail dog. She arrived to fill the hole left by the death of Mhairi at14 - if you remember the silly photo that was my avatar, that was th
  8. Hi Miocean! I'm pretty much in the same O2 boat as you. When I first started at my scleroderma center, I kept running into older gentlemen who seemed to be blowing kisses at me. Kind of nice, but I'm an old married woman so I just gave them a wink and kept trundling along on the treadmill. Imagine my dismay when I found out about pursed lip breathing!! Anyhow, I think of you often and I'm blowing you a (real) kiss. I'll hold you and your potential transplant in my thoughts.
  9. Hi Brianala, I'll add my welcome too. I was diagnosed with SSc in 2006 and at the same time with Raynaud's, pulmonary fibrosis, and pulmonary fibrosis. I had a full Nissen fundoplication about a year later, done laparoscopically. Prior to the surgery I was having constant, severe reflux. My fundoplication has worked extremely well. After an endoscopy last year, I am pleased to report it has held up beautifully. There seems to be a lot of controversy in the last couple of years about whether fundoplications are truly beneficial or not in cases of esophageal dysmotility. I don't think there
  10. Howdy, as we say here in the high and dry! Barn looms. Well, it depends on who you talk to, but most people will tell you that they are called that because they are built out of big (heavy!) timbers like a, um, well, a barn. True, but they were also, in the very old days, built and kept in the barn where the animals made it a pretty warm place. Mine wasn't that big, but she wasn't little either. The 2 that went to the consignment shop were small things. Now, the one I use every day is a big Swedish beauty, 120cm/47in weaving width. Like all of us here, I really need incentive to get moving an
  11. I sent a barn loom back to the old farm for my 'adopted' brother to use when the winter weather keeps him out of the fields and 2 more are going to our local weaving shop on consignment. (I still have one, so don't worry.)We don't have a sofa either - everybody always hangs out in the kitchen and dining room anyhow! We went digital for our reading entertainment and donated literally (no pun intended) hundreds of paperbacks to charity shops and wow, did that ever get rid of a lot of dust! My biggest downfall was paper clutter, so now I open it on the way back from the mailbox. It gets tossed i
  12. Great topic! The thing we did that helps me the most was to go with bare wooden or tile floors throughout the house. I'm enjoying our 4-legged kids a lot more now. A quick whiz through with a dust mop makes the place look like I have suddenly (after lo these many years) become a good housekeeper. We also tear our shopping list in half - Himself gets the bigger half (and gets to 'drive' his cart), while I get the shorter half and my own cart! Woohoo! We meet at the till and pay out as one. Another one of my favorite tips: instead of asking a store assistant where something is and then setting
  13. Oh Shelley, what a blow~ please know that the hearts of all of us who you have touched via the ISN go out to you. Love always, Jeannie
  14. I'm doing really well, confounding the doctors with my extraordinary recovery from that horrible illness last year, thanks. I think of you all quite often. Miocean, my SIBO was treated with week on/week off tetracycline. It took a while but eventually it cleared up. Re: domperidone. I'd suggest folks google "domperidone clinical studies" and read a number of them. I suspect you might find the published data more reassuring than alarming. Of course, any decision about any medication should be between you and your doctor and thought given to the good old risk/benefit analysis. The proble
  15. Hi all, I've been taking domperidone (Motillium) for 6 years now, albeit at a high dosage with no ill effects. It does help me quite considerably. I started it at the recommendation of my GI doctor, who specializes in the effects on the GI tract of autoimmune diseases, especially scleroderma. Because of the controversy here in the USA, he has me have an EKG once a year. When you think of the dangers to the lungs and of the possibility of Barrett's caused by uncontrolled reflux, I'd come down in favor of taking domperidone. It's sold all over the world, in countries that have as stringent lice
  16. Did somebody mention my name?! Yep, or rather nope, to fabric softeners, especially when washing my undies. I had been looking for tips to deal with sicca syndrome and found that fabric softeners are a real no-no. What's worked for me in the undie department is super-sizing. Since I needed to replace all my clothes after being so sick ( got skinny, woohoo!) earlier this year, the budget all went before I got to even dreaming about new knickers. Y'know, the 4-sizes too big panties don't chafe anywhere! Mind you, I live in jeans so there's not much danger of being hobbled by an unexpecte
  17. Me for the mad team too! I just took a weekend weaving course in a neighboring town. It's about a 45 minute drive, so I didn't need a passport! Nobody commented on the O2, we were all too busy commenting on each other's selvedges.
  18. No puss cats here (they don't fare well in coyote country), but my 3 border collies have helped all of us out of the sloughs of despond many a time. Collies will 'play to the audience' and believe me, if you laugh at something they are doing, they love it and will usually figure out how to make it funnier. Right now the old girl (15-1/2) is sound asleep, #2 is resting her chin on the window sill watching the birdies, and #3, the one in my avatar, is helping me by lying on the O2 tubing, thus pre warming the O2. That also ensures I can't sneak out of the room and get myself in trouble befo
  19. I'm with everyone else on this subject. We always say that we must be our own best advocates but I hadn't quite realized how vitally important that really is until this year. Don't ever let anyone bully you into a test or procedure you don't clearly need or understand. And, on the other hand, be demanding when doctors are dragging their feet. Mine were in wait and see mode regarding the swallow until I said very clearly that I would not be agreeing to any further tests or treatments that weren't aimed aggressively at remedying my swallowing issues. Wait 8 months to see if the function would
  20. I don't know how to thank you for all your kind words, good wishes, and keeping me in your thoughts! It seems I have now developed over-active tear glands! Miocean, you asked if I had any idea where I caught the 'super-bug'. I spent a fair amount of time thinking about this and I think it was in Yorkshire. The family there had been sick just before I arrived and friends came down from Newcastle to see me and one of them was actively sick while she was visiting. I'd like to blame the idiot on the flight back to the USA who was in droplet range of me and didn't bother to cover his mouth
  21. Hi Kblueyes, Welcome to the Forums. We're a pretty friendly bunch around here and just love to have new members 'moving into our neighborhood'. I'd bet a majority of us arrived here looking for information. I think I set a land-speed record getting home from the doctor's appointment so I could google for information! I had pretty much figured I had an autoimmune disease, but never dreamt it would turn out to be scleroderma. I was in pretty severe overload and had only retained key words: systemic sclerosis, pulmonary fibrosis, pulmonary hypertension~ I'm not sure how much sleep
  22. Seems like forever since I have posted anything on the Forums. It's been an interesting year so far~ One the 3rd of January I had the ACDF (anterior cervical discectomy and fusion) of 4 cervical disks. It went like a dream: virtually no pain and a hospital room like one in a very good spa. I am thrilled by the results, it did everything promised and the recovery was swift and easy, so much so that I was cleared to go abroad in February, a month after the surgery. We spent 3 weeks 'divvied' up between Zurich, London, and our old home ground, the West Riding of Yorkshire. We had a chanc
  23. Hi Jean, My goodness, sounds like you have been having loads of not-fun. How is your toe after all that? I haven't taken Rituximab myself, but I have a couple of friends on it and they say it has helped them a great deal. I'd post a link for you, but I have a new laptop and haven't figured out how to get more than one tab opened for the internet (my learning curve for new technology is real bad!). Anyhow, like all powerful medications, it has some side effects and I believe your doctor will want regular blood draws to check your liver function, etc. It's the old question of risk:be
  24. Thanks for all the good wishes. I love you all too. Mwah! (A big kiss, according to daughter #1). How many more? Possibly as many as 3: a shoulder replacement; re-routing the major vein in my right armpit to improve the circulation in that arm/hand; and the possibility of another go at the cervical spine. I goofed on my post - it was 'only' 3 levels (C4-C7). If that fusion doesn't take, the doctor will go in from the back to place metal fixation devices and at the same time do the C3-C4 diskectomy and fusion. Sounds awful, doesn't it? Well, she says (not quite jumping up and down),
×
×
  • Create New...