Jump to content
Sclero Forums

Shelley Ensz

  • Content Count

  • Joined

  • Last visited

Posts posted by Shelley Ensz

  1. Hi Kamlesh,


    You may want to consider having a sleep study done. There are many types of sleep disorders and if you have sleep apnea, treatment for insomnia will only make it worse.


    I have severe insomnia with alpha-wave intrusions; my husband has sleep apnea. We have entirely different treatments. It has helped me a lot to use full spectrum light therapy, which I started for psoriasis but found it was helpful for my sleep as well. Used properly and diligently, it can regulate the circadian rhythms and the whole sleep/wake cycle. I simply use full spectrum (therapy level) lamps (not the light boxes that you stare at, I could never do that) for my work and hobby areas, which are dimmable and like an ordinary desk lamp.


    My husband simply enjoys having the true light around (it is better to read by and easier on the eyes) -- but it would do absolutely nothing for his sort of sleep disorder; he has to use a CPAP machine. So the real key to treating a sleep disorder is to be sure of exactly what is causing it before launching a treatment program.


    Sometimes depression can cause sleep disorders -- but sometimes sleep disorders can cause depression, too. See our page, Sleep and Autoimmunity.


    Ask your pharmacist when you should take the med -- many of them are to be taken a few hours before bedtime, and then you can sleep through most of the hangover effect. Also ask if you can reduce the dose for a few weeks while your body learns how to adapt to the medication. And do look into sleep disorders testing, especially if you have any other symptoms like snoring or significant pauses in your breathing at night (which are possibly indicative of sleep apnea, which will not respond well to sleeping medications.)

  2. Hi Sheryl,


    As I understand it, there are only a very few children who have the systemic form of scleroderma. The vast majority of them have localized scleroderma (morphea and linear), which is very different in many ways from systemic. It primarily affects the skin, and for the large part lacks internal organ involvement.


    Oddly, scleroderma affects children equally until about 8 years of age, whereupon it predominantly affects females. That is mentioned in our most recent book, Voices of Scleroderma, Vol. 3.


    There has been a lot of research done into causes of scleroderma, and as I mentioned a lot earlier in this thread, we have dozens of pages on it, beginning at Causes of Scleroderma.


    A few of the causes are definitive. I think part of the difficulty is that many of us have been exposed to many things which could adversely affect our immune system, which makes things even more difficult to pin down. And there may be many different causes, too.

  3. Hi Michael,


    That's an interesting question. We have a very large section of our site devoted to Causes of Scleroderma. Mostly, the cause is still unknown. However there are dozens of possible causes. Some of them are proven, such as genetics in a few cases and environmental toxins in a few others.


    See Causes of Scleroderma. Here are some page topics from that page:


    What Causes Scleroderma?

    Advanced Glycation Endproducts (AGES)


    —B Cells and T Cells

    Cluster Studies (Main Page)

    —Cluster in South Boston


    Dendritic Cells

    Environmental (Main Page)

    —Artificial Joints & Breast Implants

    —Drugs and Medications


    —Mercury (Dental Amalgam)


    —Silica Exposure


    —Vinyl Chloride

    Fetal Cells


    Homocysteine, MTHFR C677T Gene

    Hormones and Chromosomes


    Molecular Defect-TGF Dysregulation

    Natural Killer Cells

    Neuropeptides and Substance P

    NF-kB Protein

    Oxidative Stress, Lipid Peroxidation

    Serum TIMP-2

    Sleep Disorders


    Tissue Kallikrein



    Vitamin D Deficiency


    Those topics are all available at Causes of Scleroderma.

  4. Hi Jennifer,

    Dr. Philip Clements is a very prominent world expert in scleroderma.

    The SCTC is a worldwide organization of the top scleroderma centers conducting peer-reviewed international research for scleroderma. By the same token, the UCLA center is a stellar scleroderma center.

    I don't know what the "two week treatment" is all about. But regardless, if you are nearby, it would probably be a good idea to have a consult at a scleroderma expert center. That's the best way to be alerted for any clinical trials or research registries that you might be eligible to participate in, and to hopefully get the very latest treatment advice.

  5. Steve, when I was still searching for life insurance coverage, several agents had gently suggested that I may want to avoid a formal application with them, because it would very likely go on file as a denial by the MIB. In other instances, they flat out told me that they would not even consider coverage for (systemic) scleroderma. And the insurance clearinghouse that had provided coverage for me for years came up with only a few carriers, at truly exhorbitant rates.


    But you were able to find coverage for me at very reasonable rates, without jeopardizing my MIB file in the process. So is there a difference in how the applicaton process works, between various companies, clearinghouses, or agents?

  6. Hi Dave,


    Congratulations! I hope that all goes well with your treatment. I know its a good news/bad news sort of thing, as in good news you qualify, bad news, you're sick enough to qualify...good news you get a chance, bad news its always a risk. Here's hoping that everything works out well for you!

  7. Hi Janey,


    I'm thrilled that you've ventured out with your new oxygen tank! Once you've braved your first trip with a new medical device, then you can do anything.


    There are many different styles of oxygen carrying cases, but nearly all the ones I've seen are intended for the shoulder strap to be worn "over the head", so that the other shoulder bears most of the weight. Many of them also come with a belt, which helps anchor the unit, spreads out the weight-bearing, and prevents it from flopping all around. Gene uses both the shoulder strap and the belt at the same time, although many people mistakenly think they need to just use one or the other.

  8. 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!

  9. 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.

  10. 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.

  11. 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.

  12. 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.

  13. 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.

  14. 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?

  15. 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.

  16. 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.

  17. 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.

  18. 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.

  19. 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.

  20. 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.