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Shelley Ensz

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Posts posted by Shelley Ensz

  1. Hi Doe333,


    Welcome to Sclero Forums.  I just thought I'd add that SCL-70 can occur in morphea (as well as many other antibodies).  There's an old study from 2009, Morphea subtypes are distinct autoimmune syndromes.  People with autoimmune thyroid disease, such as Grave's or Hashimoto's, have about a 10-15% risk of developing another autoimmune disease.  That means it doesn't guarantee it, by a long shot, but also that the risk is higher than for people without Hashimoto's.  Hashimoto's also increases the "index" level of SCL-70. 


    Perhaps you've already encountered all the autoimmune issues that you're prone to.  Who knows?  The question would be what symptoms, if any, you still have remaining after the Hashimoto's is properly treated, and then, what they add up to.  It'd probably be good to study the systemic scleroderma symptom checklist, and to have baseline testing done, just in case. 





  2. Please do remember to get set up with Amazon Smile to support SCLERO.ORG.  They actually do send us some checks from those of us who faithfully shop through the Smile program, and it really does help us tackle scleroderma! 


    It's especially important to sign up now, before the holiday shopping sets in.  It doesn't "cost" the shopper anything at all, but a small fraction (0.5%) of every purchase goes to the charity of your choice. 


    The Amazon Smile charity that you want to support is:  International Scleroderma Network .  It's hard to pronounce and harder to spell, so you can just copy it from there to your browser.  Learn more at About Amazon Smile.  And, if you're already registered with them for another charity, you can change it!  Why not change it to help all your friends at sclero.org?  Great idea!  Yes, do this thing now!  



  3. Hi Rachel,


    Welcome to Sclero Forums!


    Here's a Science Direct link discussing SCL-70 antibodies.  I don't know how the severity range would work for SCL-70 but they do refer to higher numbers out of range as indicating more disease severity.  The highest SCL-70 that I recall hearing about was around 150; and in that light, 5 would be extremely low. But as you see, it's already plenty enough to be positive, in it's own right.  And the really high results for SCL-70 strongly tend to be those with Overlap Syndrome, so what I'd take out of this is that you are likely out of the woods for having a really severe Overlap syndrome, which is always a pleasant thought to hold, right there.


    Try not to think of the antibodies as meaning very much other than a possible indicator; and more for your scleroderma expert to ponder.  


    It always gets straight back to symptoms.  Very loosely speaking, if the illness onsets slowly (the normal course) then any progression is liable to be slow, too; and if it onsets rapidly with severe symptoms, that is likely the way it will progress, lacking any intervention. 


    Basically, whatever your symptoms are, THEY are what's truly important, not the blood work.  I've had marvelous blood work (other than antibodies) when I was extremely sick, and totally whacked test results when I was otherwise fine. 


    Please spend more time right now just focusing on getting an appointment with a real, listed, scleroderma expert. Then let them interpret the test results, and get plugged into a solid system for support and information.  You know, like our Forums!  :i-care:



  4. Hi LaBellaVita,


    Welcome to Sclero Forums!  As it happens, the natural course of the disease is to wax and wane, often improving on it's own even without any treatment.  This unpredictable course is what has made it inordinately hard to study potential treatments for the disease.  Often a treatment will sail through the first two phases of clinical trials, and then flunk third phase, right when everyone feels excited about announcing a possible "cure" for scleroderma. 


    Because of this wavering course of disease, our own individual experiences don't count for very much to scientists, and only the large scale clinical trials can be relied upon.  That said, I've had plenty of treatments and lifestyle changes myself that seem to have greatly improved my health, at least for the time being. 


    The actual danger lurking in such improvements is that we'll let our guard down, perhaps stop having our regular scleroderma expert follow-ups, or abandon a treatment that we haven't given sufficient credit to for our improvement.  So I rejoice when I notice improvements, keep doing whatever I've been doing, hope for the best, and stay plugged into my medical and support resources, as you never know, for sure, if or when the scleroderma rollercoaster is going to change course. 



  5. Hi Quiltfairy,


    I can also relate to always imagining the worst, but being relieved to have any answers, even if they are negative or another big thing to adjust to.  


    For some reason, just like Jo and Sweet, it is stress-relieving for me to imagine the very worst (this'll kill me by tomorrow, for sure!) and then anything less than that seems like a happy little walk in the park for me.  Maybe it's because it changes my attitude from feeling sorry for myself, to being grateful that it's not even worse than it is; and I'm certain that any bits of gratitude improve my mood and sense of well-being. 


    I'm sorry you have even more serious medical issues to deal with. The one thing I do know is that you have the solid determination to tackle them head on, come what may, as that somehow always shines through in your posts, even during those moments when you might be feeling at your wit's end.  Here's some more hugs, to help you get through today. 



  6. Hi Curt,


    Welcome to Sclero Forums.  Jo is spot on, as always, in that this is not normal and you need to contact your surgeon/doctor right away. 


    The normal progress is to be able to be able to gradually return to normal eating. Unfortunately, many esophageal surgeries are botched, and require fixing by a more experienced surgeon.  I hope you're just encountering a slow healing process; but that foamy substance and things not staying down would get me straight back into the doctor's office or even emergency room. 


    My late husband had a Nissen Fundoplication surgery many years ago.  He had an extremely successful surgery and was back to regular eating, with no heartburn, very quickly.  He never had any foamy stuff and he was able to eat regular meals (not just a few bites) within a few days of surgery, but of course according to his post-op instructions. 


    The only frightening thing about it, for me, was that his surgeon had a bunch of other patients lined up at the same time -- and all  of them were re-operations to fix botched esophageal surgeries that were originally done by less experienced surgeons. 


    I'm an absolute stickler for researching anyone who's going to operate on me (in non-emergency situations).  I research them online, interview them, compare hospital safety and expertise ratings, etc.  And if you need this fixed, for any reason, I strongly suggest you find that top medical center and surgeon for it in your area.  You'll know you've found them when you see them reporting that they are the one who repairs the messes made by other surgeons, and when that is far and away the most popular surgery they do.


    Please, see the doctor and let us know what you find out, will you?  



  7. Hi Marysue,


    Welcome to Sclero Forums.  Although I'm not a doctor and have no medical training at all, one thing I can say is that I've never heard of anyone describe morphea as looking like a patchwork tic tac toe. 


    If it were me, I'd see a dermatologist who specializes in skin diseases, right away.  It'd more likely be another skin disease and certainly, skin cancer is always a concern with any new lesion.  I'm sure you know that some types of skin cancer can be rapidly fatal if not caught in time, and may even advance underneath the skin so as to not be so obvious, but younger folks reading this thread may not be aware of that.  And of course, it could be something as normal as dry skin, or as common as eczema.  The only problem is, it takes a doctor to diagnose and treat, whatever it is. 


    Please let us know what you find out, as it may help other people who stumble across this thread, down the road.  


    And, don't be a stranger, just because you've had morphea forever and a day!  Many of our members have morphea and our new ones especially always appreciate hearing from someone who has had morphea for many years.  



  8. Hi Bikergran,


    Welcome to Sclero Forums!  As Jo and Dimarzio mentioned, managing systemic forms of scleroderma requires regular (often annual) testing of heart, lungs, kidneys and so forth, just to try to catch any possible involvement early.  It doesn't mean we have it, or that we will get it, but it is great to have someone watching out for you!


    One of the roughest things for many of us is getting used to the testing, and waiting for test results. Now I'm basically oblivious to tests, and sometimes even the results as you get used to living with things being out of whack. Oh, and all the scare-mongering that we get at first, when we are most prone to take the potential seriousness of the disease to heart. 


    I remember my first in-person support group meeting, over 20 years ago.  The first person I was introduced to had a bunch of amputations on their hands and feet, and she was excited about going in to get another part of her leg amputated.  But, she was going to make one last trip to the casino and a big night on the town, first!  


    I was like, oh, so, you get scleroderma and then they just chop you up into itty bitty pieces, but it's okay, because you can still party hard?!  It took awhile for me to develop a more balanced view of the illness, and to focus more heavily on people who had lived with it, in varying states of distress or peace, for very many years. Now I know she was actually a great rarity, and that with good medical care, a cooperative and educated patient, and a positive outlook, many of us are living far longer and far happier than we ever believed possible. 


    Please listen to them closely enough to adhere to whatever testing schedule they devise for you. Seek out the top scleroderma expert care that you can find. Make plans to continue living a full life, even if you have to make some modifications to do it.  Jo is quite the accomplished equestrian, and I have some very exciting hobbies.  Don't think so positive that you skip follow-ups or treatments, as that bears negative results. 


    But seriously, I can really relate to the dismay of a doctor running hot and cold on different visits, and often, for no change in my actual status.  Sometimes I think they want to just be nice on first meeting and get to know us a bit, then more serious to make sure we take their recommendations to heart, and then when we're obliging, they lighten up again, until something more imposing comes along. 



  9. Hi Toughasnails,


    Welcome to Sclero Forums.  I'm sorry you have such severe or progressive involvement.  This is often a very hard disease to predict, as the symptoms and progression vary with everyone, and remissions can occur at any time (with or without treatment). 


    I've outlived my prognosis so long, and so many times, that it's downright laughable. Back in the 1970's they said I had 2-3 years left to live IF I survived that hospitalization (they were very doubtful about that.) In the mid-90's for the diffuse scleroderma diagnosis, they said I had 3 to 5 years and there was no treatment and no cure.  Two years ago, I suffered a complication that has a 99% mortality in 2 years.  But, with treatments, I'm better than I've been in way over 20 years and I'm even enjoying a round of skin softening and incredible energy and endurance. 


    I'm NOT saying your situation isn't serious or that it shouldn't be taken very seriously, indeed.  I'm just saying, many of us around here have discovered that the illness is not entirely predictable, that it can get worse or even better, at any time -- sometimes, even without treatment!  New treatments are emerging every day.  Things like dialysis and oxygen and even lung transplants and IVIg are often extending lives and sometimes even improving the quality of life. 


    Now, some people are okay with just packing it in and not bothering with fancy doctors or treatments.  We all have our own approach and it can also change at any time, and there's truly a point where it's simply not worth fighting medically and we benefit by acceptance and making the very best out of every second we have left.  Others say, hey, okay, I need to at least try to pull out all the stops as I feel strongly driven to live longer. 


    We support you, and no matter what your approach, we'll be here for you.  But you would not believe the number of people I've heard from who were diagnosed as "hopeless", who it turned out, were not. Much of the wrong prognosis is from doctors who are not scleroderma experts -- and they can be just as off with optimism as pessimism, often denying the seriousness of our condition or progression, too.


    If you have the fighting spirit, see if you can get in to see a real, listed scleroderma expert.  There are only a few dozen in all the United States, so it's often not easy or even possible (with insurance, travel, being too sick to travel, etc.) 


    It's a cute trick living with such uncertainty.  When we get a longer bit of time than we expect, it challenges us afresh to try to make the best of it . . . in a very similar but different way than knowing our time is very short indeed. 



  10. Hi Brigid,


    Welcome to Sclero Forums!  This would be a good forum to get support for GAVE, as it can occur by itself or along with scleroderma. As you know, it's often caused by medications, and sometimes, stopping those medications may even lead to a recovery. 


    If there's no good reason to suspect an underlying disease causing it, such as systemic scleroderma, then you won't need to see a scleroderma expert.  However, you'll still want solid information and support, regardless of the cause of your particular case of GAVE, and this is a great place for it. 


    Here's a warm welcoming hug, just for you -- and it will stretch all the way to Ireland! 



  11. Hi Margie,


    Welcome to Sclero Forums.  I'm sorry you have scleroderma and now sciatica.  As it happens, sciatica is pretty common, with or without scleroderma.  I've had it for over 20 years now. 


    I tried everything imaginable for it.  Lots and lots of physical therapy, exercises, floating, tens units, pain medications, ice packs, cortisone injections, etc.  Finally my right thigh went completely numb, which was an amazing relief, and every day I do toe-touches while showering (very carefully) and bend forward as far as I can while sitting down. 


    What's ironic in my case is that at onset, my doctor said it was caused by skin tightening in my lower back, as it was thick, tethered and unpinchable there. But the pain from it was relieved years before my skin softened in that area, so it may have been more just a coincidence. 


    I'm sure it's all still a temporary fix, but it's such a relief after many years of excruciating back spasms and stabbing and burning pain in my thigh.  It almost seemed like it was the passage of time that helped most of all.


    Unfortunately, pain causes muscle tension and muscle tension causes pain -- and breaking that cycle is even harder when we have an emotional reaction to pain, such as hating it or wishing it away, or feeling angry or upset in any way.  So another thing I did was focus strongly on relaxation and re-thinking how I was thinking about pain.  Things that helped me relax, always helped ease the pain (which I relabeled as "interesting sensations" to help reduce my emotional responses.) 


    I hope your journey to healing is a lot faster than mine was.  But at least, trust that there IS a light at the end of this tunnel, and there really can be an interesting life WITH sciatica. And, with scleroderma, too, of course.  Meanwhile, here's lots of warm hugs to comfort you.


    And also see: Scleroderma Skeletal Involvement, on our main site.



  12. Hi Courty,


    Welcome to Sclero Forums!  Jo gave you excellent advise and resources, as always!  The only thing I can add to the discussion is that is it possible to have lupus with anticentromere antibodies. Although it's rare, the clinical course is the same as it is for other lupus-related antibodies. 


    Although we tend to think of diagnosis as being straightforward and easy-breezy, it can be extremely complicated -- especially for those of us whose body has failed to read and follow the directions for the most classic disease presentation.  So, get to the real experts to get it sorted out (and even then, I caution that a reliable diagnosis can sometimes take many years.)


    Here's some warm, welcoming hugs for you. 



  13. Hi Brenda,


    Welcome to Sclero Forums! 


    As it happens, many years ago they did a clinical trial of oral bovine collagen as a possible treatment for scleroderma. Back then, there was some excitement, hoping that it was a potential cure for scleroderma, which is what makes it still memorable for me. They found it might actually improve skin in late-stage scleroderma, but that was pretty much about it. See our main site, Scleroderma Clinical Trials: Inconclusive or Difficult to Study: Bovine Collagen for Diffuse Scleroderma.


    In any event, it turns out that injecting collagen is quite different from eating it. As Jo pointed out, injecting collagen may cause a severe allergic reaction in people with connective tissue diseases, such a rheumatoid arthritis or scleroderma.  Collagen is a naturally occurring substance in meats.  I love to make bone broths, which can contain a lot of collagen, and I find it very soothing for my stomach.  


    Odds are good that you didn't "do" anything at all to "get" scleroderma.  Some of us have had some curious environmental exposures that may have triggered it, but very few people can pinpoint an exact cause, and in those cases, it's usually very long term occupational exposure to a toxin, without sufficient protection. Even then, it's extremely hard to prove the connection. 



  14. Hi Phoebe,


    Welcome to Sclero Forums!  I'm sorry you have chronic illness and send my best wishes to you. 


    As it happens, anyone can get scleroderma -- newborns to elderly, men and women, all races, any body type; in fact, it occurs in pretty even distribution around the world, except for some clusters that are known or suspected to be caused by genetics (such as the Choctaws in the U.S.) or environment.  See Causes of Scleroderma.  


    At this point, you'll probably be interested in our Diagnosis of Scleroderma section, and want to start looking into seeing a listed scleroderma expert, since most rheumatologists may see only one or two cases in their entire career, so they are quite likely to not recognize anything less than glaring advanced scleroderma affecting the hands (which ironically many of us do not have, even though it's the most well-known symptom by far.)  Your local internist or rheumatologist can help sort out a referral to a scleroderma center, if that's feasible with your situation and insurance (as many people have to travel out of state to find an expert.)



  15. Hi Wendy,


    Welcome to Sclero Forums.  I'm sorry you have multiple health issues. 


    Since there's a question about scleroderma, you may want to peruse our Diagnosis of Scleroderma resources. A scleroderma expert would be able to assess whether your hardened white patch is due to scleroderma or lichen sclerosus or whatever. Fibromyalgia symptoms are so extensive and can overlap so much with other diseases that it really takes an expert to sort it out. 



  16. Hi Tereena,


    Welcome to Sclero Forums!  I'm sorry you have Myeloproliferative Neoplasm and scleroderma.


    With chronic illness, and especially when we've started a new treatment, it's vital for us to report new or worsened symptoms to our doctors right away. 


    Even with scleroderma or a new medication, it's never okay for us to  simply assume that it's either the illness, or medication side effects. The changes might be due to a NEW illness or complication. It *might not be* plaquenil side effects; and even if it was, if you want to stay on the medication, the side effects may need to be treated or the dosage adjusted.


    With chronic illness, fatigue, mood swings and depression are all extremely common.  It could be symptoms of worsening MPN.  Or, if MPN is a new diagnosis, then you might be experiencing reactive depression. I've had reactive depression, which is just like regular depression, except that it is brought on by a traumatic event, and it responds very well to talk therapy with emphasis on stress reduction, particularly if it is promptly treated.  And if it is a bad reaction to plaquenil, then your doctor may decide you need to discontinue it before things get even worse.


    The sooner you find out what's going on, for sure, the sooner you can start feeling better again. Please let us know what you find out.  Also see our resources for Emotional Adjustment and Scleroderma, and Disease Modifying Anti-Rheumatics





  17. Please join me in congratulating Jo Frowde on her recent promotion to ISN Secretary of the Board of Directors!


    On August 19, 2018, Jo Frowde accepted the position of ISN Secretary of the Board of Directors. Jo is also ISN Assistant Webmaster, ISN Sclero Forums Manager and ISN News Director.  (Also see ISN: Jo Frowde and How to Volunteer)


    Jo, we can't possibly thank you enough for your truly major contribution of talent to the ISN. We all appreciate you and your enthusiastic and consistent efforts to continually provide stellar information and support for our worldwide scleroderma community. 



  18. Hi Sara,


    Welcome to Sclero Forums.  As it happens, about 25% of people with morphea develop some symptoms outside of just skin involvement. Only very, very rarely do morphea and systemic scleroderma overlap (about zero to four percent, depending on the study). Read more on our main site at Morphea Scleroderma


    About 2% of people with morphea also develop Anticentromere antibodies, and those people are at risk for also developing symptoms of systemic scleroderma.  See Diagnosis of Scleroderma


    An interesting thing you'll encounter is that many scleroderma experts treat only localized (such as morphea or linear) or only systemic scleroderma (such as limited or diffuse or overlap).  If you and your doctors think you might have both, or something in addition to morphea and lichen sclerosus, then you'd want to consult an expert who specializes in both conditions. 


    On our Scleroderma Expert List, each page mentions what type of scleroderma they treat, and whether they treat juveniles or adults, etc. 


    I'm not quite sure why you discontinued treatment just a few months ago and call this a "flare" because it perhaps might best be called a relapse from discontinuing treatment.  The steroids might have been masking your hip and joint pain, and indeed, they can even cause bone degeneration.  Osteoarthritis (wear and tear) is by far the most common cause of joint pain. Many conditions besides scleroderma can cause intermittent hand swelling, including carpal tunnel syndrome. See What's Causing My Hand Pain?  to consider the full range of possibilities. 


    Certainly, it'd be important to sort things out. And remember, it is always easier to prevent morphea plaques than it is to clear them up after they've developed. So do be sure your doctor knows whats occurring right now, in case they want to resume your usual treatment immediately. 





  19. Hi Creleon,


    You'll probably be quite happy to learn that, to the best of my knowledge (although I am not a doctor and have no medical training at all), scleroderma doesn't cause orange patches; or skin that is purple and orange all the time.  The color changes of a Raynaud's attack are temporary, often as little as a few minutes from attack to rewarming, and usually inspired by an identifiable source, such as exposure to temperature changes or extremes, or due to anxiety, or chemicals such as caffeine, nicotine, or other vasoconstrictors.  And, I've just never heard of an attack of Raynaud's described as also including patches of orange skin.  Red, blue, white, purple -- YES.  But orange?  No. At least, not for me, that's for sure. 


    The thing with orangeness is that it usually indicates that iron has leaked into the skin, somehow, like with Schamberg disease.  Is that a little closer to describing what your sister has? 


    Another article you might like is, Antibody test ‘inappropriate’ without connective tissue symptoms.  It says, "The study showed that over 90% of patients referred to a rheumatology clinic following a positive ANA test had no evidence of ANA-associated rheumatic disease."  About 15% of people with high positive ANA turn out to be completely healthy; and 35% of seniors have positive ANA.  


    Which of course, raises the question, what else can cause high positive ANA?  Positive ANAs can be caused by:  medications, old age, genetics, any type of infection, alcoholism, cancer; lung, blood, gastrointestinal and skin diseases.  So it becomes important to look at every possible cause (not just connective tissue diseases), and if everything is safely ruled out, then it may come down to a simple family history of rheumatic diseases (genetics). 


    Another way of looking at that is that only around 10% of people with a positive ANA actually have a connective tissue disease. And, a high ANA titre is not indicative of disease or disease ferocity, except in very limited circumstances; it is the other blood tests and associated symptoms that really and truly matter.  It's sort of like, positive ANA is not helpful in a vacuum of certain other symptoms or lab tests; it is only helpful when it is considered in light of them.


    ANA doesn't "cause" illness any more than a parked race car can "cause" death.  So far, what you have is a parked race car, which may or may not be related to the skin color changes. 


    It's all quite curious, of course.  The ANA in this case might serve as a significant clue, or as a detour. That's why the focus keeps getting put back on the symptoms, despite how badly all we want is answers, fast and straight answers, from the blood tests. It's in the uncertainty that feeds our anxiety, and really, none of us can be blamed for wanting answers . . . fast and and accurate answers!



  20. Hi Creleon,


    Here's an article that may help a bit: When do Raynaud symptoms merit a workup for autoimmune rheumatic disease? by Cleveland Clinic Journal of Medicine. 


    It's rather odd that you say her toes never go back to normal.  In Raynaud's, there is a return to normal as soon as the attack is over.  If that's not happening, she may have acrocyanosis.  Acrocyanosis sounds horrible, but it's a benign (harmless) condition caused by poor circulation. 


    It's impossible to tell, of course, whether you are referring to some sort of injuries or to skin ulcers on her toes. Injuries, of course, would not be related to the Raynaud's, but any sort of circulation problem would make healing slower. 


    I can't quite tell what you are referring to, when you say that your doctor talked to you about scleroderma.  Was this in the context of concern for yourself, your own symptoms, that cause you to be worried about scleroderma?  Or was your doctor referring to your sister potentially having scleroderma, due to Raynaud's and positive ANA?  Or, you're worried about having scleroderma because your sister might have it?  Whatever it is, let us know, and we'll try to answer more precisely. 



  21. Hi Christy,


    Welcome to Sclero Forums.  I'm sorry there are concerns for your daughter's health. 


    Please keep in mind that I'm not a doctor, and have no medical training at all.  It's possible that a few of her symptoms may be within the realm of normal, and if any of them can thus be taken off the list of worrisome, it may help her doctors figure it out quicker. 


    For example, although it may very well be new or more prominent for her at the moment, it's normal for fingers to wrinkle when exposed to water.  It's actually considered to be an evolutionary advantage, in that it helps us grip things better when they are wet.  Skin staying indented after pressing is a common sign of dehydration, and dehydration would also make the wrinkles more prominent. 


    Feeling pain from water exposure, though.  That's a little different. It could be that the temperature changes are too fast.  To check for that, start water at room temperature. Is that comfortable?  If so, then try changing the temperature very slightly, hotter or colder.  Is the problem the water, or the temperature of the water, the pressure of the water, or the rapid change in temperature?  And, what type of pain is it?  How long does it last? How fast does it go away? How does it go away?  


    Importantly, does any part of the skin turn colors, such as dead white, deep dusky blue, dark purple, or bright bright red?  If so, the color changes might indicate Raynaud's and that may be the cause of pain.  Happily, Mayo Clinic has vascular laboratories where they can test it all out with scientific precision. 


    With scleroderma, it'd be more likely that her fingers would be swelling up like sausages (not shrinking), and the unmistakable color changes would usually be stark enough to garner attention right off the bat. 


    But there are millions of other conditions, including erythromelalgia and even cold dermatographism that may be at play. Post-wedding exhaustion, even depression, is a real thing in and of itself, and it would be made worse by so much concern and so many doctor visits; and also the exhaustion would make the other symptoms seem vastly more significant than they might be when encountered without the fatigue hitching a ride. 


    Altogether, it's great to get checked out by Mayo.  It's really great that your daughter has passed the other tests, so far.  It's quite possible you'll receive some "happy" answers, meaning, something less than something as potentially serious as scleroderma to deal with.  You're doing all the right things.  Gather information, get a second opinion, and let the chips fall where they may. 


    This must be interfering with their honeymoon stage.  I hope matters get settled soon so the focus can return to them building their new life together.  I'm sure you all amply deserve that!



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