Jeannie McClelland

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About Jeannie McClelland

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    in the Rocky Mountains of the USA

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  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 whole I'd say I'm fantastic. I need more O2 when I go hiking, but bear in mind I live at 5384'/1614m and hike much higher than that. We still travel, although flying with a portable O2 concentrator requires lots of extra time at security and the boarding gate as well as needing to be scrupulous about the airline's paperwork (beware codeshares!). Unfortunately, I still do all my own housework, gardening, firewood lugging, and shopping~ Lest I sound like a Pollyanna, no, it's not always easy and some days it's just plain hard. I'm grateful to my doctors and grateful that I've reached 70 in such good shape. I'd like my fellow scleroderma patients to know that it is possible to enjoy life despite this disease. If I had to give advice, I'd say never sit down and always choose the healthy option. Oh yeah, and don't be afraid to argue with your doctors, your relationship needs to be a partnership. I hope you all are still shining examples of courage and compassion. Fondly, Jeannie McClelland
  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 partial to kitties that look like border collies. ;-) Jo, I'm sorry Spike is showing his age. I've gotten fond of him through our chats.
  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 cushioned, non-slip mats designed for chefs, etc. They aren't pretty, but they really help. I have them everywhere I have to stand: in front of every sink, in front of the washer/dryer, etc. Repetitive hand movements: maybe the supportive elastic braces designed for carpal tunnel might help. Shelley can give you great advice on preserving hand function. And totally off topic, I seem to recall you were concerned about travel. Well, in the last 4 years, my husband and I and my portable oxygen concentrator have been to Australia, Swizerland, and England, plus tent camped around the USA. Honestly, the only thing that has slowed us down has been the kenneling costs for our 2 border collies! For me, the diagnosis of scleroderma has been a great gift. I take better care of myself and I appreciate every moment of every day more. Even though my disease is progressing, I am resolutely optimistic. I don't sweat the small stuff. I hope you and your wife can find your way forward. Best wishes, always. Jeannie
  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. Ah, she is still my avatar, good.
  8. 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 the girl.
  9. 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.
  10. 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 has been either sufficient time or rigorous studies since fundoplication has become more commonplace in such cases to be able to say for sure. In my case, I think it was a life saver, not just because it lessened dramatically my aspiration risk, but also because of a substantial improvement in my quality of life. Would I do it again? You bet!
  11. 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 and keep moving. Weaving is so meditative and man, does it ever work as a range of motion exercise program! It doesn't require a great deal of manual dexterity either. Let's see, that's therapy for stress, PT for dodgy joints, a bit of aerobic exercise, a mental challenge, and something useful in the end. That last is important to me. Between the sclero and, er, maturity, I was starting to feel kind of purposeless. It's nice to be able to be productive again.
  12. 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 into: recycle, shred, or deal with it boxes in the garage. We get all our regular bills via email and deal with them via direct debit or standing order so there isn't much going into the deal with it box.
  13. 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 off hoping he/she really did know where the item was, I state that I am not able to do much walking and could they please get the item for me. You know, most people really are willing to help. Sadly this means I no longer have the inventory of our local hardware store memorized, but that's ok. And lastly, instead of worrying about how long it would take the two of us to eat a pot roast, I now look on it as the start of some fantastic beef and vegetable soup.
  14. 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
  15. 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 problem for us scleroderma patients is there just isn't any risk free option. Think of the path of treatment most of us have followed: antacids (how well did they work for you?), proton-pump inhibitors (google for their risks, they have them; I have been on a high dose of those for about 9 or 10 years), a motility drug (google pro-kinetic + gastrointestinal motility for their risks and prescribing limitations), and fundoplication (all surgery carries risk). One of the ways I make my decisions is to consider what my end goal is. How likely is the recommended treatment to achieve it and at what cost. I'm not just talking risks, for many of us the $$$'s are a factor as well. If I start a medication, will I be able to continue taking it long term. What is the most likely outcome if I choose not to accept a particular treatment and is that a verifiable outcome or a "we think..." outcome. Decisions, decisions~ I'm facing a big one right now. Should I continue to color my hair or give in and let it go gray? Jeannie