Jump to content
Sclero Forums


  • Content Count

  • Joined

  • Last visited


  • Rank
    Bronze Member
  1. Thanks to everybody who responded! I suspected I wouldn't be the only one who had this, I just had to ask, you know? I did purchase a good self tanner, as I too thought it might help even the tone a little bit, so far it seems to be working fairly well :) I wish I could afford to have some laser treatment done, that would be great!! I think Tangelo (I think it was her) has tried a few times with little results, if any. So, I guess it would probably be a waste of money & high hopes anyways,right? Thanks, everyone take care!! Kelly
  2. Hi all! I hope everybody is as well as can be! The warmer weather is enough to at least keep me smiling a little more :) I am wondering about pigment changes. I mean, besides the telangectasia (sp?), has anyone experienced any major changes? I have ALOT of spots on my face & chest, which at first was enough to make me want to stay in the house, or under a veil... but anywho... last summer I started to notice a different kind of change, and it's been getting worse ever since. It's really weird, so please bare with me while I try to kind of explain this - thanks. So, at the center of my forehead it's kind of like a spot of light color- there are not many telangs. there- then on each side, kind of going down to almost the top of my cheek bones, its like this brown color. And let's talk about my moustache!!!!! I literally look like I took make up 5 shades darker than it's supposed to be and applied it above my lip!! I HATE IT!!! I did notice that when the telangs. started coming, I wasn't tanning on my face as I did before. ( I was a major sun worshipper!! ) So, I wonder if it is from continuing to tan over the last few years, and some places can tan kind of normally (above my lip, and on the sides of my face) and some places just don't tan at all? Anyways, just wondering if anyone else out there has experienced anything like this? It's strange, because this causes me no pain & it's probably the only thing I don't take a med for, but yet it seems to be one of the things that bothers me the most!! It stinks to not only feel bad on the inside, but also look bad on the outside, you know? Blah blah blah, I'll quit whining now...all of a sudden I feel so vain! Yuck!! Sorry bout that... Thanks for any response, take care, Kelly B.
  3. Hey Michele - I've been on Methotrexate twice, both times with great results. I rarely have the sick feeling some people complain of, but I do make sure to eat plenty when I take it. It's helped a great deal with the stiffness & pain. It was a lifesaver for me. Medications obviously effect people differently though, so if you do try it, I hope it works well for you. Good luck & take care, Kelly
  4. Hello all!! I hope everyone is doing well. It's freezing up here in MI., I am TOTALLY & COMPLETELY OVER IT!! If we have one more snow storm...arrgghh :( So, I am looking for some answers - aren't we all? I had my disability hearing back in October, after filing back in 2005...being denied...then having to wait for a hearing before an ALJ. On the day of my hearing, they informed me I was "disabled." I was told by my lawyer that I would probably not receive any money until after the first of the year. OK, that was like almost 3 months ago. I have yet to receive a letter telling me how much monthly, how much back pay, when I'll start getting payment, ANYTHING!!!!! I have called my local SS office as well as the 800 number probably about 6 times between the two, since the end of December. They finally told me in mid-January that "there was some kind of delay" with my file, and that all the information was not receieved from my local office, blah blah blah. So, I guess I am just wondering from anyone out there who was found to be disabled, how long did it take for you to start receiving benefits? I talked to one person who said they actually received their back pay before ANY letter came. And that their monthly benefits followed very soon after, as well as the "break-down" letter. I just can't believe those people can't be specific with you and let you know exactly what they know...you know??? Sorry to rant and rave about the whole deal. I know there are probably many of you out there who are just starting out in this process, and some who are waiting for a hearing yet...some who are just waiting. I feel for you, I really do. I guess at this point, any response would maybe settle my nerves a bit. Thank you for listening, everyone take care!! Kelly B.
  5. Hello all! I hope everyone is staying as healthy as possible. I, myself, am trying to stay warm through the beginning of this Michigan winter.... I was just wondering if anyone has been to the University of Michigan for treatment? I recently switched rheumies and she is going to set me up an appt there. Just kind of curious as to whether any of my fellow Sclerodermers have been there and done that?! I hear it's a great place with some of the best Dr's. I am actually really looking forward to going, hopefully they can get down to the bottom of what's been going on...once and for all. :D Any response would be greatly appreciated. Thanks so much, Kelly B.
  6. So, this is one of those posts nobody likes to read, I'm sure. Very sorry. I have always been very "regular", at times, maybe too regular. A few weeks ago, I noticed that I stopped going. It was only every few days, and was becoming VERY hard (to go & coming out.....sorry). Last week for the first time in my life, I had to sit there for almost 45 minutes before ANYTHING happened. And when it did, I felt like I was giving birth, NO JOKE! Sorry, again. So, it happened again today. After days of not going. I am getting very worried about this, as I have read a few posts on the subject, however didn't pay too close of attention because I never experienced any of those problems. So, last week I started Metamucil & taking stool softeners, but like I said, that was a week ago...and today was another 45 minuter. :( It is very very painful, unusually painful. OUCH. Any response would be great, please. Everybody stay well, Kelly B.
  7. By the way, I LOOOVE the idea of more on the honeymoon, you know, make it very nice and romantic and all...except for the fact that he will be sharing me with 3 other boys!! We will be taking "the boyz". Our beautiful 8,6, & 5 year olds. We went to Miami a few years back, and promised the next time we would take them with us. What better way to celebrate our "new" family status by doing Disney, as a family!! They are extremely excited, so am I. It may however be more stressful then relaxing...I'm staying positive though. On the bright side, we do have babysitters available while there. My cousin and his wife and kids just moved down there a few months ago, so they have volunteered to sit whenever we want to get out alone. I'm hoping we can sneak a couple romantic rendevouz in there somewhere :P Take care, Kelly B.
  8. Thanks to everyone who has responded, all your thoughts are appreciated. You all have great ideas as well. I would never have thought of a few of the suggestions that were made!! I would like to say though... the thought never really crossed my mind that it would "take away" from our special day. I am also the LAST one to want people to feel sorry me!! I am one of us who NEVER plays up the Scleroderma card. I almost feel uncomfortable talking about it. When somebody asks how I've been feeling... I keep it short and sweet & move on with the conversation as quickly as I can. I HATE for people to feel sorry for me because I don't feel sorry for myself, you know? I guess I just felt like his huge family who consists of 14 aunts & uncles plus spouses...I would have to guess about 35-40 cousins, and their kids... :o I just thought that I would feel better giving them the opportunity to have factual information available to them- say, in the bathroom, or at the bar (you know, those little cardboard thingys that hold pamphlets?) That way, there will be no more whispers or rumors about this "mysterious" illness. Now that I have recieved so much input from all my friends here, I do have other ways to go about informing. I guess I still have to think about it, ultimately, it's a decision we will end up making together. THANK YOU ALL SO MUCH FOR YOUR THOUGHTS!!! It is greatly appreciated. It's FREEZING here today, staying under my blankie all day :D Kelly B.
  9. Hello to all!! Starting to get cold up here in MI. I know I'm not the only one starting to feel it, try to take care and stay warm :) So...I am FINALLY going to marry the love of my life, eight years later :D :P !!! Extremely excited, starting to plan, etc. etc..... So, I would REALLY appreciate some feedback on this one. Because I would hate to come off being tacky or being in bad taste on one of the most important days of my life! Your comments are basically what will make my decision... no pressure or anything ;) OK, so my soon-to-be-husband has a HUUUUGGE family. Only a select few actually know that I have Scleroderma, and know a little about what it is. Many others, however, know that I am "sick", but who knows what swirls around and what they have heard. Some, may not know at all. I have had a couple of the aunts or cousins?, (I can barely keep them all straight), ask me where I work, or what I do. When I told them I stay home, they were kind of like "Oh, THAT must be nice." Or, "I wish I didn't have to work." Not neccessarily (sp?) sarcastically, but not knowing that I didn't have a choice. Therefore, leading me to believe they were not aware that I was sick at all. My question is this. Would it be tacky or in bad taste to have, at our reception, a pamphlet about Scleroderma? I mean, I kind of think in the back of my mind...I don't know about that. But then again, what better way or what better time would there be to inform his whole family, and even some friends that don't really know too much about it.!? What better way to raise awareness?! Right? Or not? This is truly a toughy for me. I need some help. Please, be honest. Also, ask yourself if that would be something you would do, or not. Thank you all SO much, I am looking forward to any response I can get :> Kelly B.
  10. Thanks to all who responded :) At least now I know I am not alone. If anything, that made me feel a little better. That, and the fact that now I don't feel like I have this deep, dark, evil secret lurking inside of me Thank you to ALL of my fellow sclerodermers for not letting me be alone!!!!! Kelly B.
  11. Hello everyone!! Hope everybody is doing as well as can be expected. So, I am having some major feeling of guilt about something, and I thought it might make me feel better to just let it out. I hope at least one person out there has some of the same feelings, or at least understands a little of where I'm coming from. This may sound horrible, so I would like to defend myself by saying that I am, and have always been, a very caring individual. I am very sensitive and very sensitive towards peoples feelings. So... I guess I don't totally understand where these feeling are coming from. "These feelings" meaning - lately, I have noticed that when somebody complains of being "sick", or of having a headache, or that they are sooo tired, or have a backache, or WHATEVER other ailment it is that is bothering them... I don't feel sorry for them. Like, at all. Of course, with my children it is different, but they are the only ones. My mom gets a cold and calls into work for two days and acts like she's dying! My close friend gets frequent headaches and acts like she's on her death bed as well. I could go on & on of the people who surround me with complaints of such minor things. I have just recently noticed though, that when they say these things, I think to myself, I WISH I just had a cold!! I WISH my biggest complaint was a headache!! Does anyone else have these thoughts or feelings? I feel as if I am all of a sudden lacking sympathy, and to make matters worse, it is typically toward the people closest to me. :( I am just feeling REALLY REALLY bad and guilty that I have these thoughts. I wish I wouldn't. I never did before. I guess I just don't really understand. Anyway, thanks for listening, hopefully getting this off my chest will relieve some of what I've been feeling. Take care & try to stay warm, as the temperatures here in Michigan are starting to drop quickly!! Kelly B.
  12. Hi there Peggy!! I know what your going through, we probably ALL do. People don't understand what it's like to be physically exhausted by 9 - 9:30 in the morning. It's definitely not fun, and leaves you feeling completely disabled on it's own. So, I will tell my disability story. I applied for disability in Sep. '05. That was 13 months after my first hospital stay, at which time, I had pneumonia & pericarditis. I had symptoms of Sclero for years before, but didn't want to ackowledge something was "wrong" with me. I worked as long as I could. Ultimately, I had to quit about a year after that first hospitalization. Anywho, I filed in Sep. '05, recieved a letter of denial a couple months later. I was told about a local agency who did legal aid at little or no charge, (if they found you had a strong case). So, I made an appointment, and the lawyer notified me that week that he would represent me. He told me at that time that it would be a looong wait. And it was!! I finally had my appeal hearing last month on the 18th. At that time, we had all of my new medical records, all hospital stays, and ER visits. My lawyer said that he thought that was all the judge needed to make his decison. After about a 45 minute interview/overview, he asked for everyone besides my lawyer to leave the room, & wished me good luck. A few minutes later, my lawyer came out and said that he made his decision in favor of disability. He also said that as long as he has been doing this, NEVER has a ALJ rendered his decision on the spot. So, at 31 years young, I was officially considered "disabled". Bummer. I believe that as long as you have present and ongoing problems resulting from the Sclero, if the disease is staying & playing an active part in your life, and you have documents (med. records, hospital stays, ER) I can't see how they can deny you. I do suggest to anyone who is thinking of filing, especially if you are already having major problems, stop considering filing, and DO IT!! It takes FOREVER!! I realize that this was kind of a longy, so I do apologize. Good luck to anyone out there who is going through this process, stay positive!! Good luck to you Peggy, I do hope you start feeling better. Take care. :) Kelly B.
  13. Hello all!! Saw my rheumatologist the other day. Not good. Told me I tested postive for HEPATITIS B. Another diagnosis to add to the list. I was on "the net" for hours trying to find out what I could. I guess HEP B is caused by the HEP B virus, which is caused by inflammation of the liver? I've been on Methotrexate for quite some time. I've read that MTX can effect your liver. So, does anybody know if it could have caused the inflammation? Does anybody have any info at all that would be helpful? When I was at the Dr., and she told me, I didn't really respond well. I didn't know what to ask, what to say, what to think...just another diagnosis. She wants me to get tested again, at a different lab. She said "Lets just hope it's a mistake..." If I could only be so lucky :( Anyways, any info would be greatly appreciated!! Everybody try to stay healthy & strong. Kelly B.
  14. Hey Jaxs! You should not think of yourself like that! I truly believe we are some of the strongest people out there!! ANYONE that lives with a chronic illness has strength only we know and understand. :> I have been on Methotrexate for almost 2 years. Six tablets every Tuesday. At first, I did have the upset stomach, nausea feeling. I would suggest eating a good breakfast and drink more water than you usually would. My Dr. had also said that if my stomach had a problem tolerating all six tabs, that I could break them up throughout the day. I guess everybody is different. If I were you, I would consider giving them another try. Having JUST started MTX, you didn't really it a chance to work. I can tell you in my experience, it helped me tremendously!!! From the morning stiffness to the swelling, and especially the pain in my knees. It is not like death climbing my stairs anymore :D Whatever you decide, I wish you good luck!! Everybody stay strong & well!! Kelly B.
  15. Hello all!! Just wondering if anyone has had laser surgery for Telangectasia. If so, how was the outcome? What about price, and what exactly was the procedure called? Most importantly, is it PAINFUL? Any other treatment options out there? Thanks for any response :D Kelly B.
  • Create New...