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About Vee

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  1. Hi Red, I haven't been here in a very long time! But a good friend of mine brought this post to my attention. About 3 years ago, my voice started getting hoarse, like I had a cold or laryngitis, but as the years have worn on, it's gotten worse and worse. My voice got to be almost nonexistent on some days and on the days I COULD talk, it sounded like there were 3 or 4 people talking at the same time. Finally, I had to do something about it so went to an ENT. Actually I saw two of them. The first one told me that I needed a videostroboscopy and he didn't have that equipment, so I found an ENT that did. He showed me the pictures that he took of my vocal chords with this machine, and they were very lumpy and inflamed. So that's why there were so many tones coming out at the same time. With all those lumps and bumps my vocal chords couldn't vibrate smoothly together. So I had a CO2 laser surgery to remove them, and the findings were "abnormal tissue", that the doctor is certain is from the sclero, especially with the early years of my constant coughing, and collagen degradation, which is most definitely from sclero. It's been almost 3 months since my surgery, and my voice is definitely stronger than it was pre surgery, but still needs work. The doctor said that I would probably never sound like I originally did, but that I can definitely sound better than I did. I now have to undergo voice therapy, and have only had one session and I see an improvement already. I hope you find something that works for you. Good luck! Happy and Warm Wishes, Vee
  2. Hi Lisa, My name is Venessa and I live in Michigan. I am now 47. about 12 years ago I started having issues with breathing. It was very slight, and the only way I could explain it to my doctor was that it felt like I had to yawn, but I couldn't get enough air to satisfy the yawn. So he did a mini PFT (pulmonary function test) and decided that I had exercise induced asthma and put me on asthma medication. Just about the same time, my mother was diagnosed with scleroderma. Her first signs were blue fingers. About a year later, I noticed a blueness to my fingers when my body got cold, (I AM my mothers clone!) So, I took it upon myself to go to a rheumatologist and ask her to test me for sclero. She was reluctant to do so, BECAUSE my mother had sclero. She said it was very rare for it to happen to two people in the same family. Well, lo and behold, yes I did indeed have sclero. I think she took the news worse than me! :blink: I knew deep in my heart that I had it, I just wanted it on paper so that my doctor's would take me serious about my lungs and the stiffness that I was starting to notice. My greatest fear at the time was also that I would have to quit working, I am a mother of 3 beautiful daughters, one of which will be wed this Saturday! Yipee! But anyhow, to make this shorter, and it's been a very long road, that rheumatologist was humble enough to tell me that she knew almost nothing about sclero and said that she would refer me to the best that she knew, which was Dr. Maureen Mayes! I can never thank her enough for sending me to her. But Dr. Mayes soon moved to Texas on me and I was left once again searching for the perfect doctor for me. Since then I have chewed up and spit out many. I guess what I'm trying to tell you, is to never give up on that search. Even if they have a reputation for being a "great" doctor. If you don't click with your doctor, you're just never satisfied. You have to find a doctor that wants to work WITH you for your health. One that is open to YOUR suggestions as well as you being open to theirs. Nobody knows what your body feels but you, so the doctor can't just assume that because you have knee pain, it's the same pain as the patient that he just saw 5 minutes ago. Get a doctor that REALLY listens to you, not standing there with their hand on the door. And I have had that exact thing happen to me. Needless to say, that was my last visit to that office, and that person was considered one of the best! Oh well. Sorry, I'm rambling. So to end this up, a lot has happened since then, but here I am, 11 years after my diagnosis, still working, I'm a hairdresser. My fingers have definitely changed, but I have just changed the way I do things now. I'm slower, so I add more time to my bookings. Yes there are things that I can't do that I used to do. But I'm still here! Enjoying life. When I was first diagnosed, almost everything I read told me I was going to be dead in 5 years. Well that put me on a road to depression and woe. So after that 5 year mark, I realized that I was still here and I wasn't going anywhere. It was like an ice bucket got thrown on me. I realized I was bringing everyone else around me down with my self pity, so I decided I don't have time for this sclero. From then on, it would take backseat to my living. Oh it's still there, but it comes along with me everyday to do with me what I have to get accomplished, not me riding on the back of IT, letting it guide my way into doing nothing with my time. I still garden and I have picked up my old love of drawing. It has actually made me realize that there are some very important things in life to take notice of and to slow down and, yes, smell the roses, which I do every time I see one! I'm sorry this is so long, but I'm just trying to give you some hind sight of this. No you won't have the same story as me, but you WILL have your own story. And it's up to you how that story unfolds. Yes you may have issues to deal with along the way, but the best thing I can say to you is to stay positive as best you can. Find something in everyday that makes you smile, and for goodness sake, watch or read something funny EVERY DAY! I have my bad days, and my pity parties sometimes still, but I don't let them last long. If I feel like crying, and I have many times over something like not being able to open my homemade strawberry jam jar, but then I get over it and move on. Always keep in mind that no matter how bad it is, there is always someone worse off. This is a roller coaster that we are all on, it can be scary, but it has its' high moments. I think I've actually become a better person due to this disease. It's a love hate relationship, but it's mine so I take care of it. I wish the very best of life for you. And many happy times to come. Please don't waste it worrying about the "what if's". Just take one day at a time and just be you.
  3. Howdy Everyone! It's been a very long time since I dropped in. Sorry! Life has been happening at a very fast pace with me. My oldest daughter is getting married this coming Saturday, and the other girls are back to school. I just wanted to say hi, and wish everyone Very Warm and Happy wishes, and hope that everyone is doing as well as they can be doing! Hopefully, I'll remember to pop in more often. I'm here now, because someone else I met on these boards found me on Facebook, which I also don't keep up with! reminded me of you guys.
  4. Vee


    Hello Michael, I'm in Michigan, and it gets cold often here. I don't know if a sauna "helps" my sclero, but boy I sure look forward to getting into one every time I can. I have diffuse systemic sclero with ILD and of course, Raynaud's. I also have an overlap of rheumatoid arthritis (RA). I've never felt faint or ill after or during a sauna dip. So I guess you're right in assessing that your wife should be the one to tell you if it would do her any good or not. Good Luck! Vee
  5. Hi clem, A few years ago, I had my first bout with a finger ulcer. The doctor put me on Plendl, Trental, and a nitro patch all at the same time, it did nothing for my finger for 5-6 months! I was then taken off all three meds and put on Viagra. In 6 WEEKS my finger was closed and healed, and I haven't had another one since. I am a big advocate for viagra for raynaud's. My side effects were headaches, allergy like symptoms, and overall feeling of heaviness. I suppose that is due to the lowering in blood pressure. I took it at night before bedtime to aviod these side effects. The result far outweighed the negative in my case. I now keep a stash of viagra and revatio for those times that I feel a "twinge" in my fingers. I also cut mine into 1/4's, that helped alot with the side effects. Revatio is the same as viagra, just weaker. I wish you the best of luck, and fast results!
  6. Hello Smurfette, I hope everything goes/went well for you. I hope you let us know how this procedure works for you. I know someone whose doctor suggested this for her. I told her of this thread and I hope she will chime in soon. She is really scared and I think it will do her good to share with someone who experienced the same thing. Thank you for sharing.
  7. Me too, I have gum tenderness on and off. But lately I've been having problems with my teeth. I've had 2 of them break while eating dinner. In the past year. I've always had very strong teeth. Is this because of the Prilosec everyday for almost 10 years? I hope this doesn't keep happening.
  8. Vee


    In keeping with the bra topic, There'd be no pantyhose allowed!!! I almost strangle my husband with mine the last time I tried to put a pair on. He thought he'd help me since I was struggling, and somehow it ended up around his neck with my feet halfway in them! NOt a pretty sight, but it was funny. I was laughing so hard, I told him I better just take them off before I kill him or the kids see us and are scarred for life!!! Oh yea, and all the flooring is soft, so we don't have to worry about wearing cushy shoes for our painful feet. And all the toilets are tall so we don't have to do gymnastics trying to stand up to get off of it! Ok, I'll stop now!
  9. I'm a little late on this one, but I have deep purple petunia waves and dark orange marigolds this year. They are looking great, and I haven't had to water much at all. Just remember to dead head them so they get big and bushy.
  10. Vee


    All cups and glasses have handles or stems to hold. And all bra's have front closures!! Sorry about that one, but it's one of my biggest trials in the morning! And all dentists hands would be small enough to fit in your mouth without hurting!
  11. Hi Parris, I started having thyroid troubles after the birth of my first daughter in '85. I was diagnosed with sclero in '98. Whether or not it is related, I don't know, but it seems an aweful lot of us Sclerodians have thyroid disease!
  12. Thanks Tang! Peanut, I recently met a woman who had had a stem cell transplant. She is doing FABULOUS!!!!!! And I expect nothing but the same for you! Get thru the tough period and come back to us. We're waiting to hear from you. Lots and lots of Warm and Happy thoughts comin' at ya'! xo
  13. LOL! I thought they were breifcases also! I guess that's as far as my thought went!
  14. Hi Sadie, I have diffuse systemic sclero. I have interstitial lung disease as a result, which has left me with only 47% of my lungs working. I have raynaud's, of course, and I also have an overlap of Rhuematoid Arthritis. I'm sure someone else already cleared this up for you, but I didn't read all of your responses, so here is my explaination. With sclero, you can either limited(skin involvement of the hands, face, neck, and/or feet),or Diffuse(skin involvement all over the body). Sysetemic means internal involvement, which you can get with either type of sclero. And CREST also can be found in either type, since it is just initials of certain symtoms. I hope this helps some. Any questions? ask away!
  15. Hi Celia, I've had ILD for almost 10 years now. My cough is mostly dry. It is not as bad as it was in the first 5 or 6 years. I take an OTC allergy med with Decongestant. I take it at night, and it helps me tremendously. My cough will get phlemy if I work myself into a coughing "fit". And I agree wtih Janey wholeheartedly. I think the reflux issue makes the cough worse. And I also believe that we have reflux without even knowing it sometimes. My PFT's have been stable for 4 years now, and my cough is not as annoying as it was. I hope you find relief soon.
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