Shelley Ensz

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Posts posted by Shelley Ensz


  1. Hi Kimberly,

     

    Since you are having a lingering onset of something, you would absolutely not have the worst form of rapid onset diffuse scleroderma. It's begging the question, of course, to worry about the subtype when the main type of disease has yet to be diagnosed.

     

    And, no type is scleroderma is really preferential. Diffuse scleroderma often gets diagnosed faster, which is its own form of relief. And limited scleroderma can have fatal complications early on, sometimes.

     

    So I get it that you don't want diffuse. Nobody wants that. You want to live a long time. Join the crowd. The problem is though that you might be run over by a truck tomorrow, or you might thwart all predictions and live to 120, out living your children and all the rest of us.

     

    You see, the primary problem is that none of us have ultimate control, and wishing and hoping or dreading and worrying won't change that for a minute.

     

    So my question to you is, what are you doing today to savor and cherish this time with your husband and children? How can you make them laugh? What special treat can you surprise them with? How can you create a special memory today?

     

    The sooner we ask questions like that, and find answers, the sooner we start healing emotionally, which is the most important project of all, and it's something that can begin now and not some nebulous day in the future when we might be diagnosed.

     

    Here are some warm hugs to tide you over, along with a reminder that we are all better off living the moment we have right now, because it us the only one we have for certain.


  2. Hi Kimberly,

     

    Welcome to Sclero Forums. I'm sorry you are sick and send my best wishes to you.

     

    When they are referring to rapid onset of diffuse scleroderma, they are talking about a time period of weeks or perhaps a few months. It is very rare, but some people can get scleroderma and progress all the way to severe sclerodactyly within a few weeks of their initial symptoms.  People with rapid onset are most likely to get diagnosed quickly, because they display all the classic symptoms so fast, and the progression is so drastic and alarming that they often get referrals to a specialist sooner. Whereas people with slower onset with more insideous symptoms (puffy fingers instead of frozen ones, for example) are likely to linger in their primary care or rheumatologist's office for many years before scleroderma is ever seriously considered, by either the patient or the doctor.

     

    If you're being evaluated by a scleroderma expert on a consistent, ongoing basis you have very little to worry about, because if anything speeds up or gets worse, you will know right away. The most difficult thing for you may be to realize that a good 50% of people with UCTD never get a more definite diagnosis than that. UCTD is a diagnosis in and of itself.  You can have symptoms of a variety of connective tissue diseases without ever getting the full blown version of any of them.

     

    So one thing to do is to try to relax. Your illness might be as bad as it is ever going to get. It may even clear up on its own accord, and that stands true even it if is early scleroderma, because scleroderma can wax and wane even without any treatment at all.  UCTD is a form of arthritis, so you can tell people you have "arthritis" or mild or moderate arthritis or whatever term you think is most accurate at the moment.

     

    I mention this because you are in an awkward situation and many people you know will want to know the results of each of your doctor visits. With UCTD, your doctor is likely to discuss lupus at one visit, scleroderma at another, maybe call up ghosts of many other autoimmune diseases depending on how your symptoms change and develop and even clear up.  It is crazy-making for you and your friends and family, and very shortly they will all be looking at you as though you are a hypochondriac, thinking that, of course, if you REALLY had any disease, the doctor would surely have diagnosed it by now!

     

    Unfortunately that is simply seldom true in rheumatic diseases. But if you tell everyone you have arthritis, and that there are over 100 types of arthritis so doctors are debating on exactly which one you have or what combination, and likely will be debating the particulars for years, then people get off your case. That's because everyone knows someone with arthritis!  Its a term they get, but they do not get UCTD, and you'll feel personal pressure to get that "undifferentiated" differentiated in one big hurry, even though that is NOT the normal course of that disease!

     

    I know it is hard as all get out, but try to think of yourself as already being accurately diagnosed. UCTD is a diagnosis. So is arthritis. You have it. You may always have just exactly that, and it is NO LESS a disease than any other form of arthritis or even scleroderma. People with UCTD can be sicker than people with milder forms of scleroderma or lupus, and vice versa. After all, the entire range of autoimmune symptoms are open to you, whereas with specialized diseases, there is only a certain subset of symptoms that come into play.

     

    Also, you are welcome and entitled to go to any support group that primarily deals with your current most pressing symptoms at the time. That means you can settle right in here, and hold your head high. You are a real person with a real diagnosis and nothing to apologize for if your diagnosis remains the same for the next 50 years.

     

    Please also see our resources including a great video by our wonderful Amanda Thorpe on the subject of Difficult Diagnosis.


  3. Hi Margaret,

     

    Please keep in mind I'm not a doctor and I am even in need of a CPR refresher course. So just indulge me for my blathering on, and get real answers from Gareth's doctors.

     

    As I understand it, there really is such a thing as natural bone fusion, which means just letting the body gradually heal it on its own. The problem is, it can take a long time (a year or two?) to occur. The flip side of that is that surgery can be difficult, complications perhaps likely given Gareth's health, and recovery can take a long time, too.

     

    Since it's such a delicate thing to decide, if it were me, and I was you, and if there was any question of surgery, I'd probably get two opinions on the matter, no matter what the first doctor recommends.

     

    For the second opinion, I'd make it the very best spinal surgeon you can possibly locate given the restraints of Gareth's insurance. Then, bear in mind that a surgeon can sometimes see their job as recruiting for business and thus be more in favor of surgery than the average doctor. So if by chance they recommend against it for any reason, take that advice very seriously indeed.

     

    Also, I don't know if everyone automatically naturally heals, or if the situation only gets worse depending on the cause. Under even the best of circumstances, it's very difficult with chronic illness, to figure out what to treat, and what to leave well enough alone, and I'm sure it's all the more challenging given Gareth's overall health predicaments.

     

    Please give him an extra hug, just from me.

     

    :hug-bear: :hug-bear:


  4. Hi Margaret,

     

    I am just heartbroken that Gareth has been suffering so much, so long, and that your reports have fallen on deaf ears, until now.  I just wish I could give you both a great big -- but very gentle -- hug!  I hope that something can be done to either fix this issue or assuage his pain.

     

    I'm sure that any improvement at all will be a welcome relief for Gareth. Please let us know how everything progresses with this.

     

    :hug-bear: :hug-bear:


  5. Amanda, darling, your contract is not for eternity! You know we can't get enough of you, or any of our other fabulous volunteers, so the fine print says eternity "plus one". I'm uncertain if that's an invitation for Michael as well, or if it stands for plus one more eternity or what.

     

    I will send it to committee to sort that out. Which in org-speak means that you'll be waiting for the answer for an eternity....plus two!


  6. Hi Mothergoose,

     

    I'd highly recommend that you see your doctor right away regarding your medication concerns. Winging it can be dangerous. Bear in mind that nobody ever "wants" to take any medication, so you don't have any special corner on that market.  But what you want, and what your doctor wants for you as well, is to restore as much function as possible, under the circumstance of illness.

     

    It is especially important to keep Raynaud's under great control, because each episode is probably worsening the disease process. So by avoiding attacks (through medication or lifestyle changes or both combined) you might actually be improving your overall health, and most especially, sidestepping problems such as ulcers and amputations.

     

    It's a constant battle for all of us, though, as to weighing the medication versus its effectiveness versus its side effects!  Our doctors are there to help us manage that process. Also, some medications do only build up slowly and many need to be discontinued very slowly, lest even worse side effects occur.  This is the time to lean on your doctor and work very closely with them.

     

    A point that I understand nearly nobody gets until it is too late, is that doctors can and do rate patients as to whether or not they are "compliant".  Compliant doesn't mean doing exactly everything they suggest, but it does mean following agreed-upon treatments to the letter and discussing any proposed changes with them ahead of time.

     

    Should the time ever come when an enormously expensive, life-saving treatment might be called for, such as a stem cell or organ transplant, doctors take an extremely close look at whether or not the patient is compliant, and they have every right in the world, and typically use it, to deny such treatments if they feel there is a chance the patient might not follow aftercare instructions, which might entail studiously taking many medications with enormous side effects, dutifully completing every bit of physical rehab, etc.

     

    My late husband was extremely fortunate in that he had a sterling record of always following doctors orders, or discussing it with them whenever he wanted to have changes in his treatment made. So he absolutely passed the compliance test for his lung transplant.

     

    So I strongly recommend that those of us who might be faced with needing lavish treatments in the future be as compliant as we possibly can, so that we build up a reputation of being worthy of special consideration for priceless treatments. In addition to that, it is just a good health habit to discuss our medication pros and cons with our doctors and our pharmacists both before and during treatment.

     

    I have to admit that I have been noncompliant on a few things in the past, when it made good sense to me and when I knew for a fact there would be no adverse effects from stopping the meds. And I made a full confession at my next medical appointment. I must say, most doctors figure, if we were able to go off a medication and are happy about it, then they are happy about it, too, as obviously it either wasn't a very bothersome symptom, or the side effects outweighed it, so it's not like you can typically expect a lot of push-back on it.

     

    So we can provide some input, maybe helpful or maybe not, but the real discussions need to be between you and your doctor.  Remember it is okay to ask your doctor for permission to experiment with dosages!  I have had permission for variances, within certain parameters, for many medications, and I will often discuss in advance what I should do if I want to discontinue a medication.

     

    Nobody wants to take any medication (if they are in their right mind), but nobody wants to be sick, either!  You didn't volunteer for this but you need to either accept some symptoms or treat them, there is no option for magically reverting to pure health, unfortunately.

     

    :hug-group:


  7. Hi Quiltfairy,

     

    I also find it strangely comforting to say, "It is what it is." Actually, when I first heard the saying, I had a knee-jerk bad reaction to it. I suppose I must have been thinking, oh no, you can *always* change things for the better! 

     

    But much to my everlasting dismay, it isn't possible to change the vast majority of things in life, and I've done myself a lot of harm by trying. It is probably a matter of thinking or hoping that we have more control than we really do.

     

    I've not only wasted energies on worrying too much, but I also have a "watched pot" mentality.  I can actually stare at food cooking, or the computer cranking away, and think that somehow by mere force of will, it will cook or compute faster!  Or that by being impatient, it will somehow speed up a tardy friend.

     

    Being human means we get to spend huge amounts of time being silly gooses, doesn't it?  I've found some success by telling myself over and over that I'm resilient. It's a good word to me, as it acknowledges that there is, indeed, something there that could use some overcoming, either a major tragedy or a minor irritating thing, and it helps me find or create the emotional wherewithal to deal with it.  Happily, resilience can entail some crying and even some worrying, if we still overall keep our eye on the ball, which is that we are resilient, so we can figure out a way to deal. Eventually!

     

    I do believe that some of us are just not naturally worriers.  And then again, there are people like me. Even videos from my childhood show me as being cranky, tearful and in dire need of a nap!  So what comes naturally to many for me has required an awful lot of study and unrelenting practice.

     

    One thing I've picked up on is that all of us are continually scanning our environment, and we are always assessing it as to whether it holds promises or threats. The amazing thing is that we can exert control over which aspect we are going to focus on!  

     

    So I could, for example, look out my window and see a tree. If I wanted to, I could consider the fact that the tree is probably home to hundreds of spiders, maybe some of them poisonous. It could be suffering dry rot, and about to topple over into my house and land on me during the next high wind. It might harbor a squirrel, and the squirrel might be rabid!  Maybe the squirrel will bite me on my way to the car, so perhaps I should stay inside. For the rest of my life.  Plus, the tree could be sawed down, and made into weapons, and someone could attack me with them!

     

    Or, I could consider that it is a lovely tree. I could listen to the harmony of the birds singing away, accompanied by the gentle rustling of the leaves. I could recall the joy of climbing trees when I was younger, and how I had rescued the neighbor's stray cat who was too scaredy-cat to come down!  Why, altogether, it could lead me to imagining all the endless joys and mysteries of the universe, and being astonished at how even the sun managed to rise this morning, even though I had not spent a moment mentally urging it along.

     

    I have free choice and an imagination. I can use it to my benefit, and the benefit of the human race, or not. My pick entirely, and my choice from one minute to the next.

     

    So maybe "it is what it is", or maybe it is...only what I make of it, for better, or for worse. 

     

    :hug-group:


  8. Hi Ron,

     

    I'm delighted that you are getting referred to a scleroderma expert!  What a relief that will be for you.

     

    As for the CT scan, arghghgh. Are they ordering it now, or do you have to see the doctor again to get it in motion?  Perhaps things were left hanging in your visit, in that perhaps they thought questions or objections to the dye meant you were objecting to the test itself.  Who knows? Its certainly worth getting squared away, though.

     

    For low DLCO, there are about a dozen major causes of it, and pulmonary hypertension is only one of them. Even anemia and heart failure can cause low DLCO, so low numbers are not an automatic shoe-in for PH, even in the setting of scleroderma. Which means that your pulmonologist will have to figure out the reason for it, sooner or later.

     

    Okay, I can hear it now, you're going to say, gee thanks Shelley for giving me something MORE to worry about!  :yes:   As I see it, your day would just be incomplete without a little worry bubble flung into the air from my end of the world!  But seriously, that's meant to be reassuring, in its own dim little fashion, as some things are a bit preferable to PH.

     

    :hug-group:


  9. Hi Quiltfairy,

     

    Many people experience worsened arthritis symptoms with changes in barometric pressure. I thought that was just an old wives' tale, until my physical therapist insisted, over months, that I was much worse with barometric pressure changes.  I have since done some climate/vacation experimentation and have discovered that, in my particular case, she was absolutely right.

     

    It's funny because I don't want to jinx myself by looking at weather forecasts, fearful of putting negative thinking into play.  So then I usually get surprised by my pain and the barometric correlations. There are some parts of the world that have a lot more stable weather (and barometric pressure) than others. Some people find the improvement so significant that they move to that climate, or make it their favored vacation spot. 

     

    You might want to track the "arthritis weather forecasts" in your area and see if it is just coincidental, or truly applicable, to your situation. I also have found some of the allergy forecasts to be eerily accurate.

     

    :hug-group:


  10. Hi McKenzie,

     

    If it is eczema, often it requires more steps than just a cream to resolve it.  See the National Eczema Association.

     

    With eczema, it's very important to keep skin moisturized and to find and avoid triggers as well.  That can entail all sorts of changes, such as only using lukewarm water, patting skin dry instead of rubbing it, moisturizing daily, using a humidifier, and wearing only cotton or other soft fabrics.  Since your feet are affected (by something), following the tips on that site might be helpful while you await an appointment. For example, switching to a non-soap for bathing in lukewarm water, patting the skin dry, applying moisturizer immediately, and then wearing only cotton socks with breathable shoes (to avoid sweating, which can also exacerbate eczema).

     

    If you have any known allergies, be sure you have eliminated them from your environment (as best you can) or diet.

     

    You will likely fare well, once you find out what it is, and then really study all the lifestyle changes and treatments that can either help to get it under control or cure it. Many skin conditions are chronic, in that you may always be susceptible to a break-out, so learning how to avoid flare-ups often becomes vital to living well with the situation.

     

    :hug-group:


  11. Yes, Amanda, I agree it's tough to not be able to show our love the same way, when illness intervenes. I really dwelled on the topic when I was bedridden so long.

     

    What really struck me then was that we both madly loved our parrot, Webstergirl, who was comprised of about 2 ounces of feathers, went potty anywhere she wanted, and never worked a day in her life. She was basically worthless!

     

    So I figured, I brought more than two ounces to the table. I at least tried to be careful about where I went potty. And I would simply have to accept that I was loved anyway, for who I am rather than what I could do. One thing I could do, just like Webstergirl, was love with all my heart and try my best to show it.

     

    When we can't do love, we can still be loving. We can be there for others, in fact, maybe even more so as we aren't distracted by our super busy life anymore.


  12. Hi Jennuwhine,

     

    As it happens, you don't need to have lung problems in order to have shortness of breath. Many things can cause it, including heart problems, pulmonary hypertension, being overweight or out of shape, asthma, hyperventilation, and even anxiety.

     

    Noting the exact circumstances each time it occurs can help your doctor identify the cause (s) for you. Please let us know how things are going for you, and what you find out in regard to this.


  13. Hi Mothergoose,

     

    I found gabapentin very helpful for certain types of pain and therefore it really improved my daily functioning. However, eventually I developed untoward side effects from it and had to discontinue it, which I found very disappointing.

     

    For you though I must say, there is absolutely no point in taking any pain medication that doesn't actually relieve your pain!  There can be serious side effects to just about any treatment, even NSAIDs, so if they are not delivering worthwhile benefits, they could be unnecessarily jeopardizing your health.

     

    I was also on hydroxychloroquine (plaquenil) for many years, until I developed side effects (psoriasis around my eyes, causing vision problems from it steadily flaking into my eyes) for which I had to discontinue it. Recent research shows that lupus patients live significantly longer if they are on plaquenil, so its reputation as a disease-modifying antirheumatic might be very well deserved. Also in my case, plaquenil relieved both pain and fatigue, after it had a chance to kick in (that can take weeks or months).

     

    I've been on some medications for Raynaud's which didn't seem to make enough improvement for me to bother putting up with the side effects, and making lifestyle changes were overall more helpful for me in the long run. However, if my attacks worsened and were bothersome despite all my lifestyle improvements, then I'd certainly give yet another go at treatment, and if ulcers are occurring or not healing, then even a whole bunch of side effects are better than amputation!  So it is all relative.

     

    I try to always start only one new medication at a time, and to build up from the lowest possible dose. Then I bear in mind that I might be over-vigilant the first few weeks and attributing symptoms to the med that aren't really real, or that might even go away as I get used to it. Generally after about a month I can tell if I am enjoying some actual benefit from it (longer for plaquenil, though, or even gabapentin if you are still gradually increasing the dose).  I've gotten over what seemed to be "bad" side effects, at first, and I've also developed surprising side effects many years after being on a drug, so I try to take it all with a grain of salt.

     

    Personally, I wouldn't want to start plaquenil and gabapentin at exactly the same time, because it would be difficult or impossible to tell which one was the most effective with pain reduction, or which one was causing whatever side effect.  If it were me, I'd go on plaquenil first, then if still necessary, start gabapentin maybe four months later.  Otherwise it runs the risk of encountering a problem and then going off both meds out of pure confusion and perhaps even needing to start the process all over again.

     

    Good luck figuring out what to do. Keep in mind that it is the overall big picture that matters, not the irksome side effects in the first few weeks. If you are in danger of eventual amputation due to finger ulcers, who cares about a headache during the adjustment period?  Maybe you can cut the dose or increase more gradually, etc.  But if you rarely have Raynaud's in the first place, and you can avoid most triggers successfully, then maybe you shouldn't be on it, to begin with.

     

    There are very few treatments that are going to actually alter the course of scleroderma or its symptoms, so the rest of them are more aimed at our comfort and convenience, so don't feel you "have to" take any particular medication that is offered...unless you actually "have to", which should be abundantly clear to both you, and your doctors.

     

    :hug-group:


  14. Hi Quiltfairy,

     

    Thank you for your interesting poem about pain.  I also think of pain as more of a constant companion than as an enemy of any sorts.

     

    I've actually had some moments without pain that I have found a bit startling, sort of like, what's wrong, and also, oh my goodness, that medication dose must be too high for me right now!  That's because I think a bit of pain is good for me; and the goal for pain medications is just to keep it to a dull roar, not to eliminate it entirely.

     

    I also like to talk to my pain, as acknowledging it in a friendly an accepting way seems to diminish it for me, but when I rebel against it or complain, it seems to worsen. I know its very odd to welcome pain as if it is an old friend, but really, if its going to be there anyway, regardless of our attitude, why not make the best of it?

     

    Plus usually there is a message in it, like, oh boy, you sure did overdo it yesterday, next time you should pace yourself better!  Or, no, sorry, I'm just not up to that activity today, could we read or take a nap, instead?  Or even, wow, I always hurt more whenever I'm around this person, why is that, is it the chair in the restaurant we go to, or is it their relentless harping about things that cannot be changed or that they have no intention whatsoever of changing?

     

    Also, the best treatment for me is to find absorbing activities to lose myself in, and in the process, lose awareness of pain for a spell. So it has driven me to take up many hobbies and to always say "yes" if someone suggests anything fun that I might be able to do, calculating that the adventure itself is going to reduce my pain level by at least half.

     

    I didn't always feel this way, of course, but I think it's normal to go through stages such as being angry or resentful about pain or illness with many ups and downs until we eventually just deal with it, both physically and emotionally. And writing poetry about it is one fine way of dealing with it, if you ask me!

     

    :hug-group:


  15. Hi Pinchy,

     

    Welcome to Sclero Forums!  I'm sorry you have rheumatoid arthritis, plus concerns about scleroderma.

     

    One very interesting thing about your description is that it sounds far more like morphea than any other form of scleroderma, Although I am not a doctor, I say that because you describe skin coloring changes (which do not occur in systemic) and it is only on one side (whereas systemic occurs symmetrically, meaning that the involvement is basically matching on both sides).

     

    I'd recommend that you consult a board certified dermatologist who is interested in treating skin diseases (as opposed to one that specializes in cosmetic enhancements, for example.) They should be able to diagnose your skin condition and review your treatment options. 

     

    Please keep in mind that there are over 3,000 skin diseases and your particular symptoms might match dozens of them.  Also morphea is quite treatable, particularly with UVA1 phototherapy, which might well be available in your province. Also morphea is the type of scleroderma that affects primarily the skin, and it is never fatal, like some of the other variations of scleroderma.

     

    Please set up a dermatologist appointment at your earliest opportunity, and let us know how it goes, okay? 

     

    :hug-group:


  16. Hi Eoinock,

     

    Congratulations on getting the UVA1 phototherapy treatments. Even though you are using the goggles (as everyone has to), the UVA1 is still affecting your entire immune system, so hopefully that will also help your eyelashes eventually.

     

    In the meantime, discuss with your dermatologist the risks/benefits of using false eyelashes or even eyelash growth treatments. Semi-permanent eyelash extensions last for about 4 weeks at a stretch and they have "normal" short eyelash styles for both men and women with medical conditions (not for beauty or glamour looks.)

     

    Bald or shaved heads are very mainstream, but missing eyebrows or eyelashes can distract others from making direct eye contact, so it is usually well worth it to compensate for it in whatever way you can. Please let us know what you decide to do, and how it works for you.

     

    :hug-group:


  17. Yes, Mothergoose, I agree with everyone else, please hie thee to a doctor. It is not normal to have vaginal bleeding after menopause so it requires evaluation in order to rule out serious causes. I'm hoping yours is caused by just-one-of-those-things but we are here for you whether it's a fleeting, normal thing, or more than that.

     

    Dee, I can really relate to your husband. My late husband was a fantastic caregiver for me, and I found it to be deeply rewarding whenever I was able to return the favor and provide caregiving for him. There's something about telling a person you love them versus showing them by stepping up to the plate for difficult things, that is deeply satisfying. 

     

    Of course, it's not right to base a romantic relationship entirely on one person "helping" another, because then its more of a pseudo-need-to-be-needed love. But I was thrilled to have the inner satisfaction that I was truly loving, and that I was joyfully honoring our vows of "in sickness and in health" in the same way he had. It added a depth to our love which made it even richer and more satisfying to us both. Just don't let it devolve into a purely caregiver/patient relationship, as that can very easily happen.

     

    We kept the home fires burning, with lots of daily affection and love notes to each other even on our pill containers. We merrily worked our way around all sorts of physical obstacles like oxygen tanks, permanent catheters, IV lines and bags, ports, chest drainage tubes, casts, etc.  We'd give the heads up to his hospital nurses that we were serious whenever we employed a Do Not Disturb sign. We held private luau's in his hospital room, and even used battery operated candles so his oxygen wouldn't explode.

     

    Love isn't something to find. It's something to make.

     

    :hug-group:

     

     


  18. Hi McKenzie,

     

    Welcome to Sclero Forums. I must say, I haven't heard of a description exactly like yours in regard to scleroderma before, although that doesn't mean much since I'm not a doctor and have no medical training at all.

     

    What I'd recommend is that you make an appointment with a board certified dermatologist, and one that has an interest in skin diseases. (Not all of them do, as many specialize in cosmetic procedures.)

     

    They can often diagnose things by visual examination but may also need to do a skin biopsy.  There are thousands of skin diseases, and morphea or linear scleroderma would be one of the more rare ones. What you have might be very treatable.  For example, it could be psoriasis, eczema, a fungus, etc. and the sooner your doctor figures it out, the better.

     

    Please keep in touch and let us know how things turn out, okay?

     

    :hug-group:


  19. Hi Julia,

     

    Welcome to Sclero Forums. I'm sorry that your mother and grandmother have scleroderma, and that you have new onset of finger joint inflammation and swelling. Since it is a joint issue and might represent some type of arthritis, it would be very appropriate to see a rheumatologist.  It often takes months to get a first rheumatology appointment in many parts of the country, so you might as well start on it now.

     

    Please keep in mind that your family history of scleroderma doesn't mean that you will also get it, in fact, a family history of autoimmune diseases increases the odds of acquiring any autoimmune disease and not one particular type.  So, you might just as easily have gout, which is the most prevalent form of arthritis. In any case, its almost reassuring, from a scleroderma standpoint, that your joints are so swollen and the onset is so sudden, as scleroderma tends to begin slowly and insidiously, and cause the fingers to swell all over, not just in the joints, so that they look like sausages.  Also, there tend to be other symptoms early on or perhaps before that, such as Raynaud's. And joint deformity is much more of a rheumatoid arthritis thing than a scleroderma thing.

     

    Not that its better to have one particular type of arthritis rather than another!  But some types are more treatable and the treatment will vary depending on the cause. If, for example, your initial tests reveal that you have gout or a clear cut case of rheumatoid arthritis, then you won't need to see a scleroderma expert. So do make a rheumatology appointment. 

     

    To re-establish your precious peace of mind for the next few weeks or months, you may want to try my favorite trick of trying to identify and then improve my self-talk.  It's easy for any of us to talk our way to the top of a cliff, but we can also talk ourselves down from the cliff.

     

    For example, we can tell ourselves that our finger "changes" are "interesting" but that "nobody ever died from swollen knuckles".  Or that "millions of people around the world have arthritis, if they can live with it, so can I," or "I'm probably a lot healthier than my mother and grandmother, plus whatever is wrong, I could get appropriate medical care", or, "I'll be okay because I have good information and support right away."  Even the old standby of "It is what it is" can be strangely comforting, perhaps because it doesn't give our imagination permission to go rogue into total drama mode.

     

    Please stay in touch. We are here for you, whether you have only a temporary inflammation due to a passing thing, or whether it turns into something more than that. You'll get through this phase, and regardless of whatever develops, we'll be here for you.

     

    :hug-group:


  20. Thanks for that very interesting article, Jo. As it happens, I entirely agree with their conclusion that happiness is a decision. All I would add is that very often, the decision needs to be continually chosen, from one minute to the next, and in times of great stress, from one second to the next.

     

    We all continually scan our environment, and we can choose what to focus on and how to think about it. Note that the researchers did not say that happiness was dependent on good genetics, a wholesome environment, good health, happy families, success, lack of stress, good weather, luck, or status. They said it is a decision. And although sometimes we can all have enormous struggles to make that decision, it is still always an option for us, from one second to the next.