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Shelley Ensz

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Posts posted by Shelley Ensz


  1. Hi Ron,

     

    Yes, that's absolutely a very official way to get an accurate oxygen saturation reading, but three of our members, including me, just virtually fainted at the very thought of taking our sats that way all the time. :wink:

     

    Just out of curiosity, do you recall if your wrist draws showed a substantially different reading from the (finger) oximeter(s)?


  2. Hi Ron,

     

    I've had pulse oximeters (and even wrist blood pressure devices) not work during an attack of Raynauds. It can definitely be a problem getting accurate readings with circulation issues.

     

    It's important to make sure you, and your hands, are warm and not attempt any readings during a Raynauds attack. You can also clip the oximeter on to an ear.

     

    That said, I also get Raynauds in my ear lobes, so ear readings might also not be entirely reliable for everyone all of the time.

     

    I had Raynauds after a day surgery a few years ago, which is nearly unavoidable with the combination of medications and the walk-in freezer settings in many recovery rooms. They were reluctant to release me with zero sats, but I pointed out I obviously had fine sats and that Raynauds was already documented, and thus normal for me.

     

    So beware, readings of zero can create some awkward situations with you needing to explain that you are still really alive.

     

    92 is still acceptable but it's not bouncing off the walls terrific, like higher readings, including the elusive but still idealized 100%.

     

    It will be good to see what your evaluation shows.

     

    Meanwhile, it's time to follow the classic advice for single people with scleroderma: Stay warm, and keep circulating!


  3. Hi Ron,

     

    Those tests definitely need interpretation, don't they? It sounds to me, with my dire lack of medical training, like pretty standard findings with scleroderma lung involvement.

     

    By normal sats, do you mean entirely normal normal (at rest), or just 88 or above? (The cut off for oxygen supplementation.)


  4. Hi Quiltfairy,

     

    I'm sorry this has occurred and it will be good for you to get it adjusted for the future.  I'm not horribly surprised by it, though. There don't seem to be many standards (if any) for training cleaners in most positions.

     

    I've been surprised to watch even hospital housekeepers at work, using techniques that really raised my eyebrows! Ah, and I just found an article to back up my personal observations: Hospitals Reap Rewards for Focusing on Quality Cleaning.  A scary quote, "The lack of training and focus on cleaning standards combined with the pressure to clean quickly sets hospitals up for not only poor patient satisfaction scores, but cross-contamination and an increased risk for hospital-acquired infections (HAIs), Babcock added."

     

    So you may want to be concerned at home, and downright frightened in most hospitals.

     

    :hug-group:


  5. Hi Dee,

     

    The medical term for painful intercourse is dyspareunia. Your issues sound significant, especially with bleeding. See the Mayo Clinic article on this at http://www.mayoclinic.org/diseases-conditions/painful-intercourse/basics/definition/con-20033293

     

    It would be a good idea to get a thorough exam with a gynecologist, and then also to report this issue to your scleroderma expert, but likely there is no different treatment if it is somehow caused by scleroderma or its complications.

     

    Also be sure to maintain a close physical bond with your partner, no matter how many work arounds you need to employ. Counseling can also help restore affection whenever physical impairments are throwing a damper on things, which I mention for others who might stumble across this thread. It sounds like you are still keeping the home fires burning. ; )


  6. Hi All,

     

    There's an interesting way to try to figure out if dizziness is caused by ear crystals or something else.

     

    I have typanosclerosis (an autoimmune ear disease) and dizziness, also. However my dizziness is caused by orthostatic intolerance and not by ear crystals.

     

    You see, ear crystals cause dizziness when laying down, or even rolling over. But orthostatic intolerance causes dizziness when getting up or when standing for too long. In orthostatic intolerance, the blood pressure drops upon arising.

     

    Therefore anyone experiencing chronic dizziness should really pay attention to precisely what position, or other situations such as heat or anxiety, triggers it for them (if any) as that can speed up diagnosis and reduce visits to unnecessary specialists.


  7. Hi Trinity,

     

    I'm glad you've found us and that you now know how much it is you don't know. This is one disease where self-education is absolutely vital to know even what questions to ask your doctor.

     

    Sometimes they just need to mention that amputation is a potential "treatment" on the horizon. They are especially likely to bring up that topic if you are doing anything at all that could be making your illness worse, such as smoking, alcohol use, caffeine, street drugs, not avoiding cold and keeping warm at all times, not properly managing blood sugar, high stress, medications with vasoconstricting side effects, or not following all of their instructions.  I've known people who have had several amputations before making necessary lifestyle changes, and then again, some never do.

     

    If by any chance you are not following *all* of your doctors instructions to the absolute max, then amputation might be a very high likelihood, especially when combined with any type of scleroderma. Our rule of thumb is that whenever any of us are inclined to be noncompliant or self-destructive, it is a good idea for us to start (or continue) counseling to learn tools and techniques for enabling self-love and establishing and reinforcing new and better habits.

     

    Most unfortunately, with some illnesses, including scleroderma, it is possible to do absolutely everything right, and still suffer amputations. Sometimes people get discouraged by that idea, and take it as meaning they shouldn't even try. But of course, surrounding yourself with great support and encouragement to be as healthy as possible under the circumstances, and getting the best medical advice possible, can make a world of difference and at the very least keep unavoidable damage to a minimum.

     

    Please continue to find the specialists that you need to help address your health concerns, and the support you need along the way.

     

    :hug-group:


  8. Amanda, thank you for the explanation of otoconia (ear crystals). I'm continually amazed by how much I can learn around here every day, and that chalks up as one of those cool new things to know.

     

    Quiltfairy, I'm sorry for your injuries. Thank you for explaining them. That sounds like an awful lot to deal with, on top of the effects of scleroderma.

     

    :hug-group:


  9. Hi Khuenner,

     

    Welcome to Sclero Forums. I'm sorry you have lupus and concerns about scleroderma

     

    As Amanda and Jo have suggested, I recommend you see a scleroderma expert as not doing so could delay diagnosis for years. It's just so rare that there are very few experts, and it is a tough illness even for experts to identify.


  10. Hi Steve,

     

    Just to make sure, you used our ISN Guide to Scleroderma Experts, right?  The reason I ask is because thousands of rheumatologists claim to be scleroderma specialists, but real experts are very few and very far between, because it is such a rare illness.

     

    However, most rheumatologists list scleroderma as one of their specialties, even though the average rheumatologist may only see one or two cases in their entire career. It's just that it is one of the rheumatic diseases so it is often just listed automatically, and does not necessarily mean the sort of expert we are talking about.

     

    The field of real experts is very small, so they network together and collaborate on clinical trials. Most people need to go out of state for an expert, and it's not uncommon to have to wait months for a first appointment.

     

    :hug-group:

     


  11. Hi Steve,

     

    Welcome to Sclero Forums. I'm sorry you have symptoms of scleroderma and positive blood work.

     

    I strongly recommend that you consult a listed scleroderma expert to garner an opinion you can rely on. Perhaps it might be too early for any diagnosis, so you may need to be followed awhile before anything is settled. But in the meantime, anyone with your risk factors should see about nailing down life or disability insurance beforehand.

     

    It's not that you are going to need those benefits right away, just that they will probably be impossible to get once anything becomes official.


  12. Hi Ron,

     

    Dentists are likely to give you prices for implants or bridges, and perhaps not quite mention less expensive alternatives, such as flippers.  I have a flipper, which is also known as a partial. They are particularly wonderful with scleroderma because when you lose more teeth, you can simply have them added to your existing flipper, for cheap.

     

    Odds are your dentist will discourage it, extolling the many virtues of the far more expensive options, but I've been tickled pink with my flipper for several decades.  I even had them specially made without any tooth rests (because a tooth rest yanked out an adjacent tooth, yes, I'd probably have lost it anyway, but I'm happier not taking that risk, thank you.) 

     

    They will probably tell you that you'll need to take them out to eat, which to  me defeats half of the purpose, but I am able to chow on steak and corn on the cob and everything with no problem, and certainly no breakage.

     

    Even cheaper but definitely not a long term solution are temporary teeth or even extremely cheap "instant teeth" (neither of which I can vouch for, as I haven't tried or used them).

     

    The problem with missing but unreplaced teeth, that I've discovered, is that 75% of my perceived intelligence and 90% of my perceived sexiness escapes through the air tunnel created by a visible missing tooth, and I really don't have the wiggle room to overcome either loss.

     

    Another thing your dentist very likely won't tell you is that there are such things as "dental discount plans", which are not the same as dental insurance (which usually put a very low cap on total annual coverage, but strangely most of the discount plans, which are lots cheaper, don't put caps), that you can get for probably as cheap as $10/month in the U.S., no qualifying and no waiting and no ongoing commitment necessary, that typically give about 50% off all dental prices. I even had one dentist that wasn't a provider for my plan but agreed to match the discount prices so that I'd stay with them. My plan also functions as a discount prescription card if you have prescriptions that aren't covered by a prescription plan.

     

    In short, don't assume that you are entirely out of options, yet, as you join our special scleroderma toothless wonder of the western world club!

     

    :hug-group:


  13. Hi Ron,

     

    Our elaborate dental involvement pages are largely compliments of my own dental issues. Bone resorption of the mandible  is probably what you are referring to. I've had a number of teeth affected by that and along with microstomia (mouth getting smaller), my old dental hospital called it "classic textbook scleroderma dental involvement" decades ago.

     

    Generally speaking though, you are extremely unlikely to find any dentist with even minimal awareness of scleroderma mouth involvement. Therefore, I recommend you print off any relevant dental involvement pages on our site and take them along to your appointment.

     

    :hug-group:


  14. Hi Margaret,

     

    Please continue to cut Gareth a lot of slack. Fatigue can look and feel like laziness, but you know for sure it's not when you're missing out on fun things that you were really looking forward to, for lack of endurance.

     

    It's a very real issue with scleroderma, and other chronic illnesses, that fatigue can make it simply impossible to do all the things we would normally do. It often exerts a shock on all aspects of our life: work, hobbies, and socializing.

     

    When I realized this, I eventually rearranged my whole life to accommodate my varying and diminished energy levels. Now all my close associates know that there is an inherent "IF" in all the plans I make. I will prioritize whatever we have planned on, and I will do my best to pace myself and rest to try to be in shape for it; and I will look at other alternatives, too, such as maybe suggesting take-out at my place rather than dinner out, etc., whenever that's possible.

     

    I've learned to never agree to do anything I don't really want or could reasonably plan to do, because with fatigue and illness, those things are the very first to bite the dust, so it is kinder to just firmly but gracefully decline the invitation, right up front. And to let others know, as soon as I do, that plans are going to have to be changed.

     

    For what's left, I try to schedule and pace myself. I also expect to bite off more than I can chew occasionally -- because it's very challenging to predict the largely unpredictable -- and I try not to be too hard on myself when I pay the piper (because self-denigration and remorse also defrays that precious vital energy).

     

    I strongly recommend simplifying life to the absolute max. Sometimes that simplification includes focusing our social life entirely around people who are flexible and understanding. 

     

    As Amanda so aptly and cogently pointed out, it is very stressful for us to try to maintain contact with people who are prone to being inflexible or not understanding. And it is pointless for anyone with low energy reserves to try to tolerate poor behavior or impaired relationships, simply because we just plain don't have the extra energy to invest in trying to sort those relationships out.

     

    The unending stress of chronic illness will eventually cause us to either bend or break. I personally prefer bending rather than breaking, so I try to keep my goal as being flexible and resilient, instead of trying to plow along without realistic adaptations to the changing circumstances that less-than-exuberant-health imposes.

     

    I know it's probably really hard for you to figure out what end is up with Gareth. But there is a handy rule of thumb to try to figure out if we are depressed or fatigued at the moment. Depression makes us just not want to do things, even fun things. But with fatigue, we really want to do things, but we just can't muster the energy to do them (or to do as much of the activity as we'd like.)  Since depression can cause fatigue (and vice versa), it's helpful to figure out what's missing, the desire or the energy.  Depression can zap both at the same time, but fatigue will only zap the energy, and not the desire.

     

    Because fatigue leaves us still straddled with the desire but often not the ability, I've found it is most helpful to be frank and accept the situation as soon as possible, so that my own rebellion or guilt or disappointment doesn't drain my batteries even further.

     

    Give Gareth some extra hugs, just from me!

     

    :hug-group:


  15. Hi Trinity,

     

    Welcome to Sclero Forums, I'm very happy you've joined us.

     

    I'm a little confused by your post, because you say you have localized scleroderma (which is like morphea, linear, en coup) but your description sounds more like limited systemic sclerosis, because of it affecting your hands and causing digital ulcers, and also because of the RA, too.

     

    Since it is extremely easy for all of us to mix up the words limited and localized, I thought I'd better check before running off my mouth in the wrong direction.  :dont-know:

     

    See Types of Scleroderma.

     

    I look forward to hearing lots more from you.

     

    :hug-group:


  16. Ron, that's rather curious. Did your doctor explain how it could have gone away, or if it's usual for that finding to appear and disappear? 

     

    I have an obvious T-wave abnormality but sometimes they just don't report it out, although normally they do. So if I were you, I'd want to make sure that someone has verified the reading by looking at the graph, and not just the report.

     

    ECG's are not entirely foolproof. I had one at a major clinic a few decades ago, and they said the results showed I had had a massive heart attack, with 1/4 of my heart severely damaged. I just laughed, as I doubted I'd still be coherent and upright if that had just happened. And it had not, of course. The problem was in the placement of the leads, and re-testing showed that it was the same as usual.

     

    But the thing is, they did re-test right away, so we knew what was wrong, and thankfully it was only technical problems and not actual heart problems.

     

    :hug-group:

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