Jump to content
Sclero Forums


  • Content count

  • Joined

  • Last visited

Everything posted by truman

  1. truman

    Long Term Disability

    Thanks smac0719: I have a conference call set up for Monday afternoon with them. My ex company's HR rep will be on vacation, so I'm basically going it alone with the help of an advisory rep who keeps tabs on the LTD company. Spoke with her this morning and she's fuming about what happened and is aiming for them to take a loss as well. I'll let you know.
  2. truman

    Treatment for Fibro

    Hi Sweet: Never really had any side effects from it other than a sudden onset of dizziness upon getting up to fast. That faded in time. Cost was small due to co-pay. You have to understand that for Lyrica to work, it has to be taken consistently, not just when you have pain. Hope that helps.
  3. truman

    Calcium Deposit Infections

    Omaeva: I am an extremely allergic individual and I have not experienced any problems with colchicine. I was wondering, you keep mentioning "stiffness" of your elbow comes and goes. Are you sure that isn't from the skin tightening itself? I know I've had that for about a year and I barely notice it anymore which makes me feel it comes and goes but in reality it's always there.
  4. truman

    I'm not sure what to think?

    Tonyia: Wow, your emotions are bringing back mine from years ago. I too fled the doctor scene at the hint of a diagnosis. Some here are frustrated and upset because doctors not coming to a conclusion of a diagnosis; I was frustrated and upset that they did. I cried for the longest time and then "out of sight, out of mind" for 16 years until I couldn't ignore it any longer. I had your same fears; my children were 10 and 14 at the time, and I was divorced and raising them alone. The final realization came with the amputation of the large toe due to Raynauds last November. I am still going to a wound care center to heal this operation, but things are going nicely. I will say that now I devotedly see my Rheumatologist every three months. He has put me on a schedule of medication that is finally working and making my life livable again. I agree with everything these generous and caring posters have written, but must stress as well, see a Rheumatologist. This is the starting point for a doctor and future doctor referrals. My first thought was Lupus as Sweet had stated, but that generally is a "butterfly" type redness pattern over the bridge of the nose. RA and thyroid problems are what comes to my mind. Take your physical on Monday, but make an appointment this week to see a Rheumatologist as well. When and if you do, take a copy of any present blood work and medication list with dosages listed. Include any OTC meds as well. They can be important as they may or may not be interacting with scrip meds and the doctor needs to know that. Keep us posted and remember, always remember, you are not alone. We're here and you have many options to reach us via this forum, the forum PM or our personal email. You will come out of this living a great life. You just need to get you on a regime of a proper doctor and proper medication.
  5. After talking with several people on permanent disability and getting either Medicade or Medicare, one complaint that always comes through is that there is limited or virtually no participating doctors in these plans in areas remotely near to the disabled's home. My sister-in-law is now in the hospital for severe lung problems and my brother called last night with the same complaint. He has Medicade, and not one doctor in the hospital will accept the insurance. My neighbor had Americare through Medicade with the same problem and switched to Humana only to learn there was one doctor in her area who was Family Practice (not what she needs). The rest of the doctors were in another state! Anyone have similar experiences. Gets me a little nervous about availability when I get on Medicare. Definitely have to get a supplemental policy. AARP has one, but I believe you have to be 65. I don't think they give to disabled and under 65. I'll have to research that a little more.
  6. truman


    Peggy: My doctor said the same thing about the 2-3 year period but made reference to the CREST symptoms stopping and evening reversing.
  7. truman

    Orthopaedic Dr tomorrow for knee

    Jen: Just another block to climb. You'll get through it and do fine. Hope everyday for you is filled with self healing. Linda
  8. truman

    Just Checking Up

    Haven't heard or seen any new posts from Razz. Sent emails to her as well. Does anyone know if she's okay? We have to look out for one another :mellow:
  9. truman


    Karen: So sorry to hear you had such a time of things. Just when one thing gets under control, another takes over. Hope things calm down fast and you're back to normal this week. Must have been a terrible feeling. Get better soon.
  10. truman

    Disability Medicare

    I just received a letter from SSDI regarding a test program they are considering. It would allow recent disability benefit payees to get immediate Medicare in lieu of waiting for the two year period. They will be calling me next week for a 40 minute interview. The good news is that it would exit my nearly $800/month insurance premium but the bad news is that it's limit is $100,000. Since my last hospital stay was in excess of $50,000, one has to consider if it's worth participating in the program or just staying in COBRA and waiting until Medicare takes over in two years. If accepted into the program, it does not affect either your SS payment or future Medicare. Word of note: My husband's cousin has Medicare through SSI and only one doctor in her plan was listed in our state; all others were in Staten Island. I hope this is not true of all their plans. She is also having difficulty getting her BP medication, as Medicare has written her brand off the list. Obviously in either event if this is any indication, those on Medicare must obtain a supplemental policy. I'd appreciate your opinions.........
  11. truman

    Disability Medicare

    SSD just called me for the interview. In order to be eligible, you have to have NO insurance coverage what so ever and then you may not qualify as they examine the group for other determinations (I'm assuming income). It never ceases to amaze me that because you do the right thing and carry insurance at an exhorbident premium which barely leaves enough money to carry other monthly expenses, we don't get benefits that are given to others. :blink:
  12. truman

    Disability Medicare

    Thanks for the info Lisa; all definitely good points :)
  13. truman

    Disability Medicare

    Sweet: You can refuse it at no penalty and the $100,000 limit is only for this venture. Nothing else changes; not your payment or future Medicare. If you have no med coverage, check out the Walmart $4.00 prescriptions. I can email you their list. I think SSD is choosing the newest on their list and from what I read, it's the first 2,000. I'll know more tomorrow when I call.
  14. truman

    New Member Vic

    Hi Vic: Sheryl has said everything I would have said to you. The most important point is that if you had the pre-existing insurance policy, I don't see how they could even consider canceling you unless they want to give you all your premium money back from past years. Let us know how you make out.
  15. truman

    Can we pass any of this on to our kids?

    omaeva: Did your Mom's Raynauds go away, or did she begin taking blood pressure medication as she got older? I ask because when I was diagnosed with CREST, I asked the doctor why I didn't have all the Raynauds attacks for the last few years. She said it was because I was on Norvasc for my blood pressure. I never put the two together. Just a thought.
  16. truman

    Calcium Deposit Infections

    omaeva: Actually there is a drug to control the calcium deposits, Colchicine; it's a medicine routinely used for gout. Ask your doctor about it. I'm constantly dealing with the calcium deposits on my forearms which are easier to control for infection. The ones on the elbows are real problems though. I had one on my left elbow before I was diagnosed with CREST. Drove the doctors nuts because they couldn't get rid of it. Finally after three infections, the bursa sack was destroyed and started leaking through the calcium deposit opening. They had to operate and removed the bursa sack from the elbow (a new one eventually grows back). Because of Raynauds, they had to keep the operating room a comfortable 70+ degrees (surgeon had Raynauds as well). I developed a terrible infection from the operation and nearly lost my arm. After three months with an Infectious Disease doctor, I was finally healed. This is probably why you doctor does not want to mess with the deposit in that area. I have since developed another on my right elbow, which is what led to the CREST diagnosis. The orthopedic doctor/surgeon refused to operate because xrays showed the calcium seeping from the inner part of the elbow and developing down to the outside of the elbow. He said with CREST, I would never heal right and be in and out of wound care centers. I now understand because of the previous incident and the slow healing of my foot after my toe amputation. Presently, I keep a careful eye on it. Generally they do come to the surface and pop, but it could take months. May sound silly, but I take bunion pads and use that over the calcium deposit so that the deposit isn't bumped or abraded. You may even find it getting a little smaller if you try that, since it will lessen any chance of aggravating the area more. Hope that helps and keep me posted.......
  17. truman


    Alice: I believe in order to get SSI, you have to be virtually penniless. SSI counts all your resources with includes bank accounts, cars, property, cash, etc. and according to the website, those dollar amounts are listed as: The SSI limits for resources that we do count are: Individual — $2,000 Couple — $3,000 Sweet is absolutely correct. We can't live off SSD. I'm only getting 40% of my salary which I don't think a 16 year old could live off. I've been blessed that I watched my finances all these years and hopefully that will carry me through. With my health insurance and recent property tax increase, I'll be living off $2,000/year from SSD, which doesn't even pay for the dog food for Mia and Ollie. <_< Basically being unemployable at this juncture, I'm just grateful for any assistance the government will give me. It might be consideration for a new thread, but are there any other benefits for disables such as us?
  18. truman

    Today's Doctor's Visit's

    Sheryl: Glad you got the Cortisone shot; you'll see how much better you are going to be. Sorry to hear about the diabetes diagnosis. What brought that about? Does it run in your family? Hopefully it can be controlled by diet and that they try that first. Keep us updated.
  19. truman


    Alice: The password letter means you DID get your disability request. They just sent you that before they notified you. That's how I found out because I called SSD and the approval letter should have come first. The password is for your on-line use. You can use the password to request to have your payments directly deposited to your bank account, as I did. Just go on-line and look around using the password they sent you. There is an area there for you to change it to a password of your choice. Again, you DID get the approval. The password letter comes after approval.
  20. truman

    Xrays Today

    Yes, we're still at the toe healing. The doctor did x-rays today to check the bone at the amputated area. He said it looks very good, which was apparently a concern to him. He did show me where the bones are all swayed and skewed to the right and did say I have very poor bone construction left :( . I asked if it was compensation of walking more to the right side of the foot due to amputation and he agreed, but said the bones would not have molded like that if it were not for the poor bone structure. Funny, dentist said the same thing about the bone density of my jaw. Must be a Sclero thing. I know my blood tests show almost nil on vitamin D but I so hate taking pills. I'm down to 6 a day now (Exforge, Lasix, Synthroid, Prednisone, Potassium and Nexium) but I guess I gonna have to take "D", that to or sit outside more for the sun exposure. The other problem is a bone on my left foot rubbing the skin and causing quite a pain, therefore I tend to wobble now instead of walk. I feel like a "weeble". Doctor cut the skin off once, but keeps repeating. Anyone have any solutions on how to lessen or subdue this pain and some curing remedies? I guess it's similar to a bunion. I've tried the bunion pads, but they seem to make the pain worse.
  21. truman

    My aching neck

    Peggy: I don't think it's a Sclero issue. I think we are so sedentary, that when we do a little of this, or a little of that, we pull a muscle we probably haven't used in a while. At least that's what I find happens with me.
  22. truman

    My aching neck

    Hi Karen: I wouldn't take the Prednisone. I'm having such a time just trying to wean off the stuff, it's definitely not something I'd take randomly. An over the counter pain reliever would do just as well. Sometimes when I lift something heavy without bending properly, I pull a muscle in my chest and my neck too. Just don't realize how it happened because the pain usually shows up a day later. Did you try alternating with ice and a heating pad? When I do that with taking the pain reliever, the pain is usually gone in a day or so.
  23. truman

    Forum Buttons

    I see the "top" button, but I don't see a "bottom" button. Maybe I'm just not seeing it, but it would be so useful for the extremely long posts we've already read through and replied to. Just a thought. Again, I missed many things, maybe it's there and I don't see it :mellow: .
  24. truman

    mouth issues

    I haven't had the gas since a teen, but I do remember holding a ball like jiggy in my hand. The dentist said it was my way of controlling how much and how often by squeezing. Is that still done today? I just get Novocaine. It seems no matter what the pain is, ie: dental, foot, etc. I always have to be given twice the dosage as a normal person, Novocaine included. I used to have an extremely high tolerance to pain, but I think I've had so much pain in the last year without the fight left, that the tolerance has been extremely lowered.
  25. truman

    Fatigue is ruling my life !

    Maybe we're missing the whole thing; we're just sleeping beauties . What's not to love? :)