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Posts posted by razz

  1. Hi Muffintop and welcome!


    Hopefully I can give you some advice and share my experience with you my fellow comrade.


    I was working full time as a patrol officer in Chicago when I developed an aggressive form of systemic scleroderma. At the time I was experiencing numbing of my fingers in the winter of 1997. I chalked up this unusual sensation to the extreme cold weather and thought it was a temporary condition. That is until a few months later I developed tingling and painful swelling in my fingers, hands and feet. I realized this was becoming serious because being able to use our hands quickly and forcefully in our line of work is crucial. I made an appointment with a rheumatologist and was diagnosed with scleroderma within six months of my first symptoms. However the form of scleroderma I had or its development were unknown.


    I read materials on this autoimmune disease hoping to gain insight on what to expect and how it would affect my life style and job. What I did read was discouraging. At first I was apprehensive about explaining my condition to my partners and even more to my superiors. I told my partners I had an autoimmune disease called scleroderma. It was a progressive condition that hardened the skin and caused arthritic stiffening of the joints. In systemic cases, the internal organs are affected. Since my condition was uncertain, I remained hopeful that my condition would be treatable and I could continue working as a police officer. My superiors were very understanding and encouraged me to continue working as long as I could. I was able to undergo testing and treatments without affecting my schedule because I worked the night shift.


    Unfortunately, I developed an aggressive form of systemic scleroderma and had to go on disability within four months of giving my bosses notice of my diagnosis. During my medical leave my health did not improve and I had to take an early retirement.


    My advice to you would be to talk to whichever superior you have a good relationship with and explain your medical condition. If a desk position is available, consider that an option so you can continue working towards your retirement.


    Good luck and I am sure everything will work out for you! If you have any other questions you can send me a message which I will gladly respond to.


    Best regards,


  2. Amanda,


    There is a study of twins where the link of fetal cells passed from one to the other is the possible cause of scleroderma. I'm not sure of the study's name. I find the microchimerism theory very interesting too.




  3. I didn't think my ears were that noticeable!


    I guess I should add shrunken ears :blink: to my list. What's next....shrunken head probably. I've always had small ears and thought they were cute looking. Well, they did get a wee bit smaller to the point where I can't put earrings on anymore but it doesn't bother me. I was thinking about getting my ears repierced since I miss wearing my earrings.



  4. Hi living linda,


    Sorry to hear your esophageal stretching this time around didn't improve your swallowing. Did you mention this to your doctor? I am not medically trained in any way but I would agree with you that if the doctor felt rushed and was behind schedule he may have performed the procedure quickly. There could be other possible reasons why you haven't felt any improvement but I would definitely call your doctor so he is aware that you are not feeling relief. I am sure he wouldn't mind seeing you again to determine what course of action he should recommend.


    Great ideas on using the hot coffee mug for a dual purpose! I try to remember to bring a sweater or light jacket with me where ever I go, especially in the summer when the air conditioning is turned on so high in buildings. If I forget I'm shivering and turning lovely shades of red, white and blue. :(


    Keep us posted!




  5. living linda,


    I am sorry you are suffering the consequences of spring cleaning. :blink: I, and I'm sure many others, will be attempting some sort of cleaning project since the weather's been warming up. I have to tackle my basement and sort through boxes from a house fire we had three years ago. I managed to go through half of them with a helper two years back. I couldn't believe the stuff I had saved, donated things I didn't use and threw out so much accumulated clutter. I still have at least 10-25 boxes to go through. Usually I try not to accomplish a major project in one day. I'll break down whatever needs to get cleaned or organized into segments, like I'll do half one day and the other half the next. It's so easy to forget how tired or achy we get until we're all done and feeling the aches and pains later. I also can't bend down too often or pick up heavy things because when I do I aggravate my hernia. I limit myself to a few items or wait for someone to help me.


    I hope you're feeling better and recuperated from your cleaning project! :)




  6. Hi everyone!


    I am glad to see this post brought up again because it is a question I still wonder about on occasion. Dental work involving amalgam metal fillings (with mercury) has always been of interest to me since I did have extensive dental work the year prior to my first symptoms. I had a root canal procedure done along with fillings, which I've also read could be a potential cause. I have considered replacing my metal fillings but chose to leave them in because of the cost. Instead when I require additional fillings, I ask for the porcelain/ceramic fillings. I found a dentist who does amazing work within the small confines of my mouth and just had two ceramic fillings put in recently. So far I'm very happy with her work! The ceramic fillings look better, are more expensive but at least I don't have the thought in the back of my mind of possible mercury leaking into my system.


    I do make a point to stay away from products or locations with strong fumes or chemicals. When I clean my house, I use a very small amount of a cleaning product. Thank goodness for all the environmental awareness on using healthier substitutions as household cleaning products. There is so much we can learn about living in a healthier environment.


    Take care!


  7. I don't where I inherited my miniscule mouth and thin lips. My dad's smile reaches ear to ear and my mom's mouth is of a normal size. Going to the dentist wasn't a problem back in the day because the skin around my mouth would stretch like rubber. Now, I can't grab an apple and bite into it or munch on a corn on the cob soaked with butter. That doesn't mean I can't eat those foods. I just can't do it in the quick grab and carry way.


    It's funny how I thought women who wore lipstick past their lipline were eccentric looking. Now, I can say move over ladies and make room for me. I'm in the line my lips outside the lipline club. Thank goodness I'm not missing the loss of full lips since I never had them. :)




  8. Hi Rachel,


    I wanted to write earlier but got caught up in a baking fiasco (my daughter is expecting and wanted banana bread). I finally sat down and am so impressed by all the responses. I feel like having a smoothie, right now!


    I can relate to this topic because I have a hard time gaining weight. It's no picnic being barely 90, okay it's really 89.4 pounds. And, I don't like it. I try really hard to gain weight but I think several things are going on with your mom. Being in the hospital is hard (especially long-term). Not being able to get up and walk around when you want, feeling ill, medical personnel poking and prodding and well meaning people insisting you eat, well I feel for your mom. She's been in control of herself all her life and now things are dramatically different. I say if she wants to drink fancy coffee drinks from morning till night time then at least she's getting something in her tummy for now. I agree it is hard to eat or drink in a bedridden position. Find out what other foods she enjoys and is easy to swallow. All of the baby jar foods are great and some combinations blended together would make great smoothies. Like apples and bananas, or carrots and apples, pears and peaches, etc. Try experimenting.


    Also, maybe your mom needs to talk to someone, like a therapist who could help her sort through her feelings. In the past when I've felt down in the dumps or lonely, etc. I lose the motivation to eat. Then if I miss a meal, I feel even more fatigued because I didn't eat. It can be a vicious cycle. I remind myself of all my blessings and then make the effort to try and gain weight. I do want to be around for as long as I can.


    I think as long as your mom has an appetite that's great!! Give your mom a hug for me!




  9. Hi Kaurie,


    The best advice I can give you is stay positive, hopeful and always have faith that you will get better, feel better and most importantly draw on your sense of humor! If you're running low on humor, we have plenty to go around because that's what keeps us going as you can see. :lol:


    I understand how difficult it is waiting for a doctor's appointment or test results. Using this time to prepare yourself for your doctor's visit is a great approach. Be sure to find out as much as you can about the doctor's background, how long has he been practicing, his experience with scleroderma, how many of his patients have scleroderma or autoimmune-related diseases, what types of treatments does he recommend, can he be reached by telephone in an emergency, is he open minded to trying other treatments, does he answer your questions to your satisfaction, etc. If you decide this is someone who you feel will provide the best possible treatment than you are pointed in the right direction. Once he determines your diagnosis and depending on what your symptoms are, then he can order the necessary tests. These are just ideas to get you started and don't be afraid to ask any question no matter how insignificant it may sound. Bring a pad of paper in case you want to take notes. Take someone with you to your appointment. It always helps to have another person there for support. Lastly, remember your doctor is your partner and together you both will decide what is best for you.


    I am glad you found this forum and hope you find answers to all or most of your questions.


    Welcoming hugs,


  10. Hi Penny,


    Would you (or anyone here) by chance recall the name of the House episode on scleroderma? :huh: The episode I watched was not the one I was hoping for, even though it was interesting. Thanks for your help.




  11. Penny,


    Is the name of that episode called "Skin Deep"? If it is, it's on tonight at 8:00 p.m. central time on the USA cable channel. I hope that's the one because I'm not answering the phone for that hour. :)




  12. Judy,


    I saw that this morning and could not believe it!! Sure enough the guy's finger was renewed, complete with fingernail and all. That gives hope to so many people. I would definitely like to hear about more people trying out this new method. Maybe, we'll be reading about you in the news. I'm keeping tuned.




  13. Amanda,


    You're a great example of persistance! Keep calling until someone gets back to you with the test results AND an explanation of the results. You're doing great staying on top of things before they have a chance to go any further.


    I've had ultrasounds of my heart in the past and it's always heartening to see my ole ticker pumping away. It just confirms that I'm still alive even if I don't feel it.


    Good job!



  14. TOB,


    I agree with everyone, you should get a second opinion and find a doctor who specializes in rheumatology not charades. This one sounds like he put his brain on pause and couldn't give a comprehensible explanation for your condition. You need a rheumatologist who specializes in scleroderma to examine you and order all the proper tests so you can begin a suitable treatment plan.


    I lost count of how many doctors I fired :blink: before I hired the right one to treat me! If you feel better taking someone with you to your appointment to help you drill the doctor, don't hesitate. :)


    Best wishes,


  15. Dear Judy,


    I am so sorry to hear what you are going through. Thank you for your considerable contributions and all your hard work, you are amazing! I also wanted to thank you for your story because it was something I didn't know until recently. Late fall, last year, I was doing yardwork and used my weedwacker for over an hour. The constant pressure on my middle finger from holding the weedwacker did something to cut off the circulation along my middle fingernail. Over time I thought it was a regular ulcer and treated it as such until I noticed it wasn't healing, it was dying off. It had dried to a very hard scab and wouldn't fall off. I left it alone, kept it covered and showed it to my rheumatologist who kind of shrugged it off as something that would eventually heal. I finally read something about arterial blockage. I now realize how important it is to differentiate fingers ulcers from necrotic ulcers. They both heal differently and should be treated differently. Long story short, the scab fell off and left an indentation and the fingernail bed has been pushed up but I did manage to save the finger. Eight years ago I lose the tip of the index finger on the same hand, so now I need to keep an eye on my right hand fingers. I will also ask about seeing a vascular doctor to have that duplex ultrasound done.


    I hope everything goes smoothly for you. :)


    Hugs, Razz

  16. RobinAustin,


    I'm glad to hear you're back! Thanks for letting us know how your appointment went. It's helpful for us to hear what your doctors say because it might benefit someone in the same situation. I am especially glad you don't need a transplant. That's the best news! We take the good with the bad, we'll just keep working on the bad. I'm rootin' for you to keep getting better.


    I agree that I feel better myself when I'm helping someone else.


    Wishing you the best luck,


  17. Dear TJW,


    I am so sorry to hear your daughter was diagnosed with scleroderma. I had not heard of treating a rash with dandruff shampoo (although that doesn't mean it's not a method of treatment) but I was perturbed to hear of the resulting effects. I am also not medically trained, but it does sound like it exacerbated the condition. Unfortunately, an appointment for the best diagnosis can take weeks of waiting and when you're in pain or discomfort you just want immediate relief thinking it is something minor. I, like yourself, would probably have gone to a local walk-in clinic too.


    Thank goodness Kelcie has now been properly diagnosed and is getting the appropriate care. I can understand how she is missing her friends and school right now. Maybe they can pay her a visit or call her by phone to lift her spirits. I hope Kelcie is feeling better real soon!!


    Best wishes,


  18. puzzlingpatty,


    My heart goes out to you. I am sorry to hear you have been diagnosed with several autoimmune symptoms.


    Jeannie has given you some very helpful links in finding a specialist and dealing with the emotional adjustment and heartburn. Many of us have experienced the beginning stages of our illness with uncertainty, pain and fear. Emotional support is so important and will get you through the difficult days. Pain management is crucial and will help keep you mentally focused so you can set in place a treatment plan, find a good specialist and organize your life to a more suitable level of comfort. I hope you find a good rheumatologist experienced in autoimmune diseases as soon as possible.


    You will find lots of helpful medical information, life stories and a very supportive group here. Whenever you need to vent or have questions, we're here for you.


    Take care,


  19. Good question. In my case, I had aggressive systemic scleroderma and experienced the symptoms immediately within a sort time period. From diagnosis in 4/98 when my skin was still flexible, my skin tightening began within seven to eight months. It began with extreme itching all over, arms, legs, chest, shoulders, neck, back etc. It felt like a bad case of dry skin. Then I recall my skin on the tops of my hands, arms and shins taking on a shiny appearance and the density of the skin started feeling very hard and thick. It became uncomfortable when the skin from under my chin down to my chest became very taunt. I couldn't move my head upward because the skin was so tight it would pull the skin on my chest. :blink:


    That was almost eleven years ago and now I don't have the skin tightening or thickening. But I still do itch :huh: sometimes!




  20. Hey KD8410!


    I am such a slow poke. I just scrolled down the screen and found your message.


    I am so happy for you. Yippeee :lol: !! That's the best feeling ever! Finding a way to do a house chore differently, yet perfectly. I like your idea about pre-soaking the dishes. You made my day! Happy dance, happy dance. :)


    You know doing dishes was always a big deal with my daughters, no one wanted to do them. I would end up washing them and my fingers ulcers would ache.


    Ever since the arrival of my dishwasher 3 years ago, it's been smooth sailing! I love my dishwasher. This one even has an upper and lower sprinkling system.


    See what a little rethinking does? Thanks for letting know how you've taken back a household chore!




  21. KD8410,


    What I would do for a normal night of good sleep without waking up, tossing and turning and making a trip to the throne (potty). My routine is I watch a bit of television until I get sleepy. Around 2:30 am, I drag my groggy self from the sofa to my bedroom. If I had a late dinner or snack, (10:00 p.m. is the latest) then I end up sitting with my back against my pillow, trying to fall asleep. This usually leads to waking up around 4:00 am with the pillow folded in half and my body in an abnormally crooked position. I can't say I remember having a night of refreshing rejuvenating sleep.


    As far as too much sleep, if I'm on the throes of the flu or just feeling under the weather, I will have a sleeping-in day. Of course I have to let my dog out first, otherwise he will yelp and howl to wake me up.


    If I could only have a good night's sleep.~~~~~~




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