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Shelley Ensz

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Posts posted by Shelley Ensz

  1. Hi Emmie,


    I have checked with one of our medical advisors about this. They assure me that there is no basis for this at all. Furthermore, they added that SSDI judges only by "disease burden" and makes no assignations about "blame". Imagine all the emphysema/heart disease/cancer folks where behavior, e.g smoking has a real influence.


    So this just does not sound right. You really need to get this straightened out somehow. You sound big enough to somehow handle the situation, but imagine the devastation of people who have no idea what their rights are, or no support network to let them know it isn't true.


    I don't know exactly who you should approach, or how, but I am sure someone around here would have an idea how to go about it. Please don't just let it drop!

  2. Hi Patty,


    I want to apologize for my prior message in this thread. I severely neglected to say that I feel terrible for you and for the hurtfulness of your sister's response.


    Nobody deserves such a lack of compassion or understanding, which you got doubly whammy from both your sister and from me, and it is all the more devastating when dealing with something like scleroderma.


    I really can't say or even speculate as to how anything should be handled with your sister. All I can say is that I do feel your pain, I have been there/done that myself, and there is no easy way through the situation. I am sorry for adding more hurt to the pile by going off on a tangent and overlooking the most important aspect which is that I feel your hurt and I wish I could make things better.

  3. Hi Irene,


    Yes, 200 to 400 is normal dosage for plaquenil. Also, taking the full dose at bedtime can help you sleep right on through any side effects you might have from it. And that is a good trick for many medications, but check with your doctor or pharmacist to see if that is okay in your particular case.


    It's also year end, and time for everyone who is on more than one medication to review their prescribed and over-the-counter medications, vitamins and herbs (all of them) with their pharmacist. Make a list, and ask the pharmacist when a good time would be to review your medication program.


    This can catch any hidden conflicts between meds, remind us of things we may have forgotten, such as that we need to take a certain med on an empty stomach (and not along with other meds); or that we cannot take calcium within 4 hours of a thyroid med, and so forth.


    I always seem to learn something useful when reviewing things with my pharmacist. Once he pointed out that one of my blood pressure meds could be worsening reflux. By changing to another blood pressure medication, I was able to greatly reduce reliance on the meds for reflux. Another time he told me that generics were going to be released soon for a brand name I was on, and switching in a timely manner saved us a lot of money.


    Many vitamins and herbs can interact with meds, so remember to include all the ones you take. For example, if I hadn't told my pharmacist I was taking calcium, he wouldn't have thought to warn me not to take it within 4 hours either side of my thyroid med (and so on).


    My pharmacy is 24 hours, and they prefer medication review calls or general questions very late at night, when there is little store traffic. Calling for non-urgent information when they have a long line at the counter will not be welcomed, so asking them for the best time to do a non-emergency medication review really pays off. A good pharmacist on the healthcare team can be worth their weight in gold.

  4. Hi Katherine,


    Please keep in mind that I have no medical training at all, and that I may be wrong (I often am!). I've never heard of anything like this due to any form of scleroderma. It sounds like dermatographia, which is an overreaction of the skin due to scratching. Sometimes the welts can stay there quite awhile. But who knows, it could probably be any number of things, so you should see your doctor.


    If you aren't aware of having scratched your arm there, you may have itched it during your sleep. OR it could be something else altogether. But to satisfy at least some of your curiousity, no form of scleroderma causes raised skin, nor lines that would be 1/4" apart.

  5. Hi Sweet,


    You can have cognitive problems without it being due to age or to things that would show up on a brain CT. Often, they can be due to sleep disorders, or coexisting fibromyalgia (or both). Identifying and treating sleep disorders can be very helpful; and there is an increased incidence of sleep disorders among people with scleroderma.

  6. Hi Nan,


    Is that next Wednesday, as in next week, or tomorrow?


    Hopefully you will have some answers then, although the diagnostic process can be very long and drawn out for people who don't have the good sense to develop all the classic symptoms in a timely manner, in the proper order and with the precise bloodwork. If your body would just read the textbook first, and follow it step by step, it would be an enormous help to your medical team. Lacking that, the best you can do is just hang in there.


    From your symptoms, it sounds to me like you are in the right support forum, with others who will understand what it is like.

  7. Hi Janey,


    Wow, that is definitely quite a rollercoaster full of news! Even though I'm sure it will be quite an adjustment for you, I'm very happy that you are on oxygen at long last. It will do good for you, and for the PH.


    It's such a catch-22 with illness...good when they catch things (finally); bad when you have to take on new treatments and meds, but good when they help a bit. That's quite a lot to adjust to right away. Just one of those things would be more than enough, wouldn't it?

  8. Hi Patty,


    In my (probably warped!) way of thinking, neither you nor your sister "owe" each other an apology.


    I think where most of us make a wrong turn with chronic illness is expecting that our family or friends will always react in a caring or supportive manner. That they will rally 'round and be there for us.


    Whereas, reality is that they have their own lives and their own troubles. Most people really are "wrapped up in their own bubble gum" -- just as most of us are before and (especially) after we got sick ourselves.


    Your sister may already be maxed out for what she can do. Odds are, she simply cannot emotionally cope with anymore than she already has on her plate, and needs her own form of care giving when she comes up for air.


    Care giving is a difficult, demanding, stressful and largely unrewarding role which many people dread and are not prepared for. To just assume that family members or friends are ready to leap into our loving arms (or even be basically civil or understanding) to nurture and care for us when we are ailing is a surefire set up for disaster.


    If relationships were difficult or strained prior to the onset of illness, the additional stress can fracture or destroy them. That's why many of us undertake counseling when we are first diagnosed, to help prevent situations like that. You may have been fed up with your sister long ago and this simply presents the opportunity you've always been waiting for to tell her a thing or two. By using the illness as the leverage for it, everything gets laid at the feet of scleroderma, and distances us from our responsibility in the matter.


    All I can say is that in my opinion, it is simply not worth it to destroy any relationship only over illness; that only adds to our stress, which makes us sicker. And it is much better in the long run for us to accept full responsibility for how we act and react in any relationship. Just being ill does not give us the right to treat others with disrespect. To my way of thinking, it certainly wouldn't ever justify yelling at anyone since nothing is ever resolved in that manner.


    In my opinion (and keep in mind I may be wrong, I often am, and I'm not a counselor of any sort!) your sister doesn't owe you an apology, unless you want to demand an apology from everyone who is heartless or misunderstanding when it comes to dealing with chronic illness -- which would be enough people to populate at least 3/4 of the world (if not a lot more).


    If everyone has to live up to our expectations, our journey with illness will end up being sad and bitter, instead of enlightening and joyful.


    Yes, I said joyful! The journey can help us grow into being better and more compassionate, if we let it. Or it can help us destroy everything in our path. The choice is entirely up to us. In those moments when we are looking only at what others are not giving us, instead of at what we can give others, we are being selfish and lacking in compassion.


    Illness does not give us the right to demand things from others, to place expectations upon them, or to have them finally shape up to how we've always wished they would be. It doesn't give us the right to lose our temper, to ruin relationships, nor does it give us an excuse to do so.


    When we become ill, we need to be expanding our base of support, and not demolishing it. That can require overlooking people who are unskilled or unprepared or unwilling to act as our caregivers right now. "Love 'em from a distance" is a good way to think about it.


    We don't ever need to stop loving people, even when interacting with them further isn't a good idea for them, or for us. Holding anger in our heart against people only adds stress, for which we pay the price of worsening our illness.


    Besides, if you've always known your sister's strong point wasn't compassion for her other close family members, why did you look to her for that quality? Perhaps her strength for you will be in distracting you from illness. Perhaps she can be the person you can be around without ever having worry of the conversation turning to your illness and symptoms.


    Sympathy and understanding are nice and certainly have their place in chronic illness. We all wish we had more of that! But it is also nice to interact with people who don't primarily see us as sick, who treat us as just being normal, and who focus on things like our hobbies or even who distract us with their own interests and stories.


    Your sister will probably not be a babysitter when you need it. So perhaps you need to look up the options for home health care if your condition worsens. Or get a list of babysitters you can afford, or other friends who can help in exchange for something you can do for them; illness doesn't absolve us of the tit-for-tat arrangements, even if all we can give at the moment is a thank-you card.


    But your sister just might be the perfect person to go to the movies with, or the one who will update you on all the family news. Distraction in itself helps reduce pain levels...provided we focus our energies on positive distractions, that is.


    Sometimes we have all reacted in ways we wish we hadn't, after we calm down and have a chance to think them through. If we were temperamental before we became ill, we are likely to be even worse when afflicted with pain and fatigue. But it is up to us to learn how to gracefully cope with the symptoms, and it is not up to others to accommodate us by forgiving our lapses.


    So in my (probably warped) way of thinking, neither you nor your sister "owe" each other an apology. I'd say you have a pretty even score right now. So the question is, who would gain most by apologizing -- you, or your sister?


    I think you would be the winner, in every way. It would show that you are a bigger person, and it would let more joy infiltrate your heart. And if somehow down the road she comes to your rescue some day, you won't feel quite as guilty since you are not still harboring hard feelings about her.


    But of course, do whatever you want, whenever you want! It's even perfectly okay to seek and hold a grudge, if you think that is the best way to relieve stress and add joy to your life at the moment, since relieving stress and adding joy are terrific painkillers, just in themselves.

  9. Hi Jen,


    I hope you had a great time in Mexico, but I'm sorry you're in "more worser" shape now. It's my understanding that anyone on immunosuppressives or on oxygen (not to mention, both at once) should see the doctor at the very first sign of a possible infection.


    It's quite likely to be a common cold that they can't do anything about -- but it's really not up to you to make that judgement call, since it could be something else entirely or you may need to go on preventive antibiotics.

  10. Hi Denelle,


    I agree with Janey's suggestion, that this would be something to discuss with Human Resources, rather than your manager.


    It might be that they cannot guarantee you will have your original job back, because they will have to fill it in your absence. That may mean that you end up in another department or branch, or in another position altogether.


    You might have some rights under A.D.A. (Americans with Disabilities Act), but my impression is that you would need to consult a disability lawyer to see what your rights are, in relation to your present employment. It's my impression (but I may be wrong, I often am, and I have no legal training at all!) that it is not a flat guarantee that a person with disabilities can't lose their job, nor that their job must be held for them after an extended leave.


    Basically, you would really want to get advice from your HR department and from a good disability lawyer before making any moves at all, since it sounds like you are in a very precarious situation right now. Any rights you might have to disability through your employment would evaporate if your employment is terminated; and being unemployed is no guarantee of disability coverage, either.

  11. Another thing to consider is what expenses are covered by the clinical trial(s) , if any.


    Oddly enough, just because something is a clinical trial does not necessarily mean that all expenses are covered. The more costly the treatment, the more likely that the clinical trial is not paid for by the research funding and, depending on the treatment, not necessarily even by the insurance companies.


    This means that some people pay out of pocket, by thousands of dollars or even more than a hundred thousand dollars, to get the "fancier" treatments like stem cell transplants. It is extremely worthwhile to check both the protocol eligibility requirements and the out of pocket expenses before even seeking an evaluation for clinical trials.


    When figuring costs, also include considerations such as travel, lodging and meals; and double this if you will need to take a companion with you. Some of the clinical trials are only for those who are able to do significant personal fundraising, or who are well to do.

  12. I'd just like to add a touch of caution here. And that is, just because other forum members have experienced the same or similar problem, it does not necessarily mean that the problem is caused by scleroderma. Even if the problem is related to scleroderma in one person, doesn't mean it is caused by scleroderma or related to it in another.


    For example, a person with scleroderma could get an attack of Raynaud's. And so could a person who is otherwise completely healthy, and it would not mean they have scleroderma or that the attack was caused by scleroderma.


    I have no medical training at all, of course. I can just say that I haven't heard of this issue ever mentioned before (perhaps because people would be a bit reluctant to discuss it). It's possible that it could be a common thing in healthy people, too, and not especially due to scleroderma.


    Also, the majority of people with systemic scleroderma have Limited Scleroderma (which means that the skin involvement is limited to the hands and face; but there is no particular limitation on the extent of internal organ involvement), with normal skin density and pliability elsewhere. Some very common medications may also cause thinning of the skin; and this may be due to other conditions such as psoriasis, dermatitis, or fungal infection.


    As usual, we should report all symptoms to our doctors. Even something like this. But just use caution and let your doctor decide what to attribute as the cause, in your particular case.

  13. Hi Kamlesh,


    Please keep in mind that I have no legal training at all, and verify everything I say with a reliable legal source.


    The article that is listed on our site at:

    Disability: Patient Rights is in regard to California patient rights. So it looks to me like you are legally entitled to a copy of your medical records.


    However, you must request them in writing. Please read that link and follow the procedures they recommend.


    Some providers can give interesting responses when they are just asked...so the key appears to be presenting the request in writing.


    It should absolutely not be necessary to have your attorney call their attorney, unless you have threatened legal action against them; and even then, it looks to me like the law is on your side and you can contact the California Medical Board if necessary.

  14. Hi Odd One,


    I'm very sorry that you miscarried; and that your husband has scleroderma.


    As it happens, I've never heard of any association between Down Syndrome and Scleroderma. To the best of my recollection, this is the first time this topic has even come up in nearly 9 years of this site's history.


    Down Syndrome is very common in the general population, affecting about 1 out of every 660 live births, whereas scleroderma is very rare. As I understand it, Downs is usually caused by a spontaneous gene abnormality, and there is seldom a family history of it. It is much more common when the mother is over 35 years of age.


    There are issues that can affect systemic scleroderma pregnancies, but I've never heard of an increased incidence of Down Syndrome, nor any correlation between these two conditions.


    Of course, I have no medical training at all, and I may be wrong (I often am!) so please let me know if you uncover any reliable research to the contrary. It is inevitable that some people with scleroderma (at least about 1 in 660) will have had a Down Syndrome baby, but I am not aware of any connection beyond that.

  15. Lizzy, I'm very sorry for all you have gone through the past few years, but it is absolutely delightful to see you back again!


    For those of you too new to know, Lizzy used to volunteer as an ISN Senior Support Specialist, and she helped out in some administrative areas as well.

  16. Hi Margaret,


    I'm very sorry your son is experiencing these problems. It must be very hard to cope with all the medical tests and confusion.


    For what it's worth, and again, I have no medical training at all, but it is my understanding that if mini-strokes of any type are suspected, a thorough work-up should be done for them immediately, never presuming they could or would be caused by scleroderma. There is a much higher risk of a full stroke within 24 hours of a mini stroke, and within 3 months of a mini-stroke -- which may be preventable with prompt diagnosis and treatment, regardless of the cause.


    I may be wrong, I often am, but I think he should have an examination to determine whether the zoning out is due to seizures or mini-strokes, or whatever.


    I certainly wouldn't say its a given that people with scleroderma would automatically have worsened cognitive abilities. In the case of Downs Syndrome and autism (with possible Alzheimer's) there would already be such significant impairments that it would be rather unlikely for them to be able to measure or identify an additional cause of cognitive worsening.


    Since severe esophageal problems are common in Downs Syndrome, but it is very rare for the esophagus to just suddenly stop working in scleroderma (usually it is just a long slow decline), it may just be that they are carefully ruling out all other possible causes of this before attributing it to Downs. I will hope that the rheumatology appointment turns out well this week, as your son's health concerns already sound overwhelming.


    How is he managing to get nourishment, with his esophagus no longer working? Did he have to go on tubal feeding, or was it just a temporary situation of some sort?

  17. Hi Margaret,

    Scleroderma Antibody negative, probably refers to SCL-70 antibody; and "negative" in this case is good news. (Why they call something "negative" when it is positively good news, is just beyond me. Likewise, they call some things "positive" which are horribly bad news. Go figure.)

    Some types of polymerase antibody tests might be related to Downs Syndrome. And Downs can cause severe gastrointestinal and esophageal problems (along with dozens of other things) as I'm sure you may know. Antibodies may also be produced with Downs Syndrome, as there does seem to be some relationship to autoimmunity. So it may be possible for him to have some positive antibodies without also having scleroderma.

    So for the moment, until you know otherwise from the rheumatologist, you may have some reasons to relax a little. The odds might be in your favor that his symptoms may be caused by complications of Downs...although I sure can't say that complications of Downs are any sort of pleasantness, it can at least be a little bit reassuring until or if the rheumatologist thinks otherwise -- especially in the absence of other things, like Raynaud's, calcinosis, pulmonary fibrosis (hopefully), and tight skin.

    We all know how upsetting it is just to have the possibility of scleroderma mentioned. I sure hope your son doesn't have it on top of everything else. My heart goes out to you both, and I hope that they are able to find and perhaps ameloriate some of his symptoms soon.

  18. Hi Barefut,


    I found it extremely discouraging trying to get life insurance coverage after my term life insurance expired. I couldn't even get an insurance agent who would agree to even try to get me coverage at less than the uninsurable rates. Finally, Steve Kobrin worked on my case and it took some doing, but eventually he was able to find a company that would accept me.


    He was also kind enough to eventually post a web page for us to describe how to get life insurance when you have scleroderma.


    I should warn you that it is necessary to believe and follow all his instructions for getting coverage, as outlined on his webpage. You can't even try to hold anything back regarding medical history or medications, since they request your medical records. It's rather dismal to see everything they end up documenting. But you can also sell them on the idea that you have some advantages....such as if you have been sick for many years, you can point out how now you are stable; that numerous surgeries or medications have fixed many problems; that, for example, you may have lung fibrosis in both bases but your PFT's are still pretty good.


    It's very worthwhile to mention how well you are still functioning despite everything. For example, even if you are disabled, it's worthwhile to point out that you are still as active as possible and work or do volunteer work for so many hours per month. That you enjoy hobbies. That you have a positive outlook.


    I used everything that was in my favor, including the fact that people with more than one autoimmune disease have a better overall prognosis than someone with only scleroderma. I emphasized my good health habits, even though I am prohibited from doing aerobic exercise, and my regular medical care. I pointed out how I was on far fewer medications than a few years earlier, and that I was taking medications that were believed to be effective for controlling my illness.


    I'm trying to say, you can't hide the facts, but you can put a positive spin on everything that speaks well for your case, even if it seems like quite a stretch! Even with that, the vast majority of insurance agents will not take on a challenge like this. So don't even bother with agents who don't bother with difficult cases.


    Steve seems to think it's fun to try to insure people who are otherwise considered uninsurable. However, I should caution that he was unable to insure my husband for less than the exhorbitant rates, because he had just been listed for a lung transplant, which is a very risky and often fatal procedure in itself. So don't get your hopes too high, but don't be so discouraged as to not even ask, either.

  19. Hi Margaret,


    Please keep in mind that I am not a doctor and have no medical training at all. But to the best of my knowledge, the symptoms you are describing such as blank stare "zoning out" and incredibly slow walking would most likely not be related to scleroderma. I would be quite concerned that the zoning out could possibly be due to petit mal seizures, as seizures are a common complication of Downs Syndrome, or even to mini-strokes.


    I would urge you to contact his doctor right away to report the development of these new symptoms, as they are quite unlikely to be related to scleroderma, and certainly they would not be part of a constellation of symptoms that would lead to a scleroderma diagnosis.


    People may slow down a bit with swollen joints, as Heidi mentioned, but it would be highly unusual to slow them down to the extent that you seem to describe. People may be a little spacey with brain fog, as Janey mentioned, but I rather sense you are describing a different level of severity rather than the usual sluggishness that can be brought on by fatigue. If both of these symptoms onset at the same time, it would make it even more important to consult his doctor right away.


    A big danger with any chronic or systemic illnesses (and especially when there is any overlap with other illnesses) is assuming that every new symptom is explainable by the disease. Whereas, each new symptom needs its own separate evaluation since any other ailment can coincide or overlap, at any time. A good doctor will always start with the basics, such as going through all the most common causes of any problem, and ruling them out carefully, before laying the new symptom at the foot of the existing known disease(s).


    It's also helpful not to "save up" new symptoms for a rheumatology appointment, although many of us seem to think that's a good idea in the initial stages. But by getting all new symptoms evaluated right away by a primary care physician (usually an internist), then those records are available for review by the rheumatologist, who is more likely to look only at rheumatic issues and perhaps ignore symptoms that are unrelated to their specialty or the specific illness that they are evaluating.


    So for example, by having your son examined for these issues right now, you will have even more information to report to the rheumatologist, and the appointment will not be as likely to get sidetracked. His primary doctor might notice joint involvement and inflammation, for example, which could account for his slowness, or he may notice something altogether different, such as a neurological impairment or other strange thing. In any event, it would likely be a bit too much for a rheumatologist to deal with in one appointment.


    That's just my two cents worth...I sure don't know the whole situation and perhaps it will work best for you to cover it at the rheumatologist appointment. Whatever happens, happens! But just because something may or may not be related to scleroderma, certainly does not mean that it may not be serious or worthy of immediate attention.

  20. Hi Margaret,


    By DS, do you mean Downs Syndrome, or Diffuse Scleroderma? It is Downs Syndrome that is associated with a higher incidence of Alzheimer's, and is on chromosome 21. Downs is also a systemic illness, but very different than systemic scleroderma, of course.


    Zoning out would not be a symptom of any sort of scleroderma. But it would definitely be something to let his doctor know about, since seizures can be a symptom of Downs.

  21. Hi Rochelle,


    Since you are still trying to get a diagnosis for your skin/finger problem, I'd recommend going to a board certified dermatologist, asap. They can examine the skin and possibly biopsy it to see what is causing the itching/rash/swelling/tightness, etc.


    If your only symptom outside of this is reflux, which is very common in the general population, odds would probably be very high that your skin problem is treatable, such as a form of fungus or contact dermatitis that has just been allowed to go on too long.


    For future reference, one rule of thumb is that if anything you come in contact with creates a problem (such as a rash), the first thing to do is avoid it, always. In the case of jewelry, put it in the jewelry box, sell it, trade it in, give it away, cover the inside with nail polish, or just wear other jewelry. Don't tempt fate by trying to wear (or consume) it again, unless you are somehow able to rule out allergy as a cause, since some allergic reactions can be fatal.


    I also had a wedding ring that was bothersome. It had a wide band, which trapped moisture underneath it from hand washing and sweat. So now I have another "wedding" ring which has a design of open hearts and a much narrower band. It is made out of the same metal (gold) but it has never caused a problem, so my situation was simply with the design of the jewelry causing fungus, and not a metal allergy.


    But in any event, it's perhaps a little bit premature to worry about the cause of scleroderma when you are still in the diagnostic stage and it could be something other than scleroderma. If you really relate your skin symptoms to the ring, which certainly sounds reasonable under the circumstances, odds would be very high for it to be something other than scleroderma. So please, see an excellent dermatologist as soon as possible, and even if it is good (as in non-scleroderma) news, please let us know!