Posted 31 October 2008 - 02:28 PM
I was diagnosed about 4 years ago with scleroderma with a biopsy. I have morphea, linear, ?? Raynaudâ€™s, Sjogren's, had my throat stretched twice, also have diabetes. I know if I were a horse â€œtheyâ€ would just shoot me. I've had it at least 2 years before my diagnosis.
Does anyone else out there have diabetes also, if so do you have problems controlling glucose levels?
Not looking forward to the winter months, last year was the "coldest" winter I've ever experienced! I used my electric blanket into June. (Use it just to warm the bed up/when I pop in turn it off) has made such a difference.
I live in the Reading, PA area, am married husband math teacher at the local high school, have a son (21) daughter (19) both in college. I work in an optometric office.
I am very frustrated seems I come away from doctor appointments with more questions than answers. The part that bothers me the most is they donâ€™t want to know about scleroderma or how to treat it. So tells me Iâ€™m not important enough for them to research either or both. Such as I asked my endocrinologist if she sees patients with scleroderma & diabetes her answer was â€œI only have two people in my practice withscleroderma, so I donâ€™t know?)
Thanks for reading,
Posted 31 October 2008 - 10:08 PM
Welcome on board! Sorry to hear that you have to deal with such problems.. I hope we can help you in many ways in the future.
I also feel so very often that when I go to the doctor's office I'm the one being doctor there.. Doctors know nothing about this here in Finland, and usually I have to tell them how I should be treated.
I know how you feel about that Raynaud's phenomenon, since Finland is pretty north and it gets cold here in winter. I'm really having problems if I just step outside, from September through the May. Summers are sometimes bit easier.
Anyways, it's good to have you here.
Posted 01 November 2008 - 01:31 AM
Sorry to hear of your problems. Sadly it's something most of us have to deal with. I also have diabetes, not only do I have a family history but I have been on steroids for several years now which contributed to the onset of the diabetes, which is two years now.
I was recommended to my endo office from the rheumatologist, and their offices happen to be on the same floor of the office building, so it is very useful that they have a close relationship and share several (not many) sclero patients. I am fortunate that in Philadelphia there is a sclero center; it isn't too far away from Reading, you may want to consider a trip. You can send me a private message if you want more info.
I find that most doctors tend to focus more on the diabetes and its consequences; these are two complicated diseases and the interactions between symptoms, meds, complications etc is almost overwhelming. I trust my rheumatologist to act as 'quarterback' and coordinate all my other care, and he is savvy enough to defer to the other specialists when necessary. My primary is a good guy, but he is way out of his league with my case, as would be most.
Between them they keep very close watch on the A1c, blood glucose levels (I take it twice daily and bring a log with me to my appointments) and cholesterol levels. With taking steroids it is very difficult for me to keep my glucose levels low, no matter what my diet is. I was on insulin shots for a year or so and am soooo glad to be done with that.
Yes this is frustrating. It's annoying, disheartening and sometimes depressing. No getting around that. Winter is particularly tough for most of us. I've been hoping to get away from the east coast and into warmer climates, but I have a son who has two more years of college... then I'm outta here!
The good thing is you have a tremendous resource here, in the forum. You'll get more support and information from all of us than you will anywhere else.
Good luck to you and we hope to see more of you!
love, Mary in Philly (YAY PHILLIES!)
Posted 01 November 2008 - 02:31 AM
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Posted 01 November 2008 - 02:50 PM
You're right if any of us were a horse they'd shoot us dead for a dirty dog and then send us off to the glue factory!
Good thing then that you're a valuable and valued human being, you're now allowed to carry on until body parts start spontaneously falling off.
I have no experience of diabetes only scleroderma so others will post with info specific to your requirements.
Glad you've found us and take care and look forward to future posts.
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Posted 02 November 2008 - 08:48 AM
When I was in the process of trying to control my numbers, I did modify my eating habits and taken a low dose prescription for a while. My numbers were never over 200 and rarely over 150 unless I was on steroids, which I took a fews times for asthma. Eliminating as many sugars as possible (natural and artificial) as well as monitoring the carbs did help tremendously. I also have PCOS so my personal thought is the diabetes stemmed from that. That's my thought and I'm sticking with it.
I am sorry you have physicians who don't seem to be interested in your condition or care. If that is the case, they may not be too aggressive in trying to treat it so I would look for other doctors. I have been through my share and kept looking until I found the ones that worked with each other and for my benefit.
Best wishes and keep us posted.
Posted 02 November 2008 - 01:43 PM
You have found the one and only place you will ever need when feeling frustrated, angry, sad, in pain, or any other feeling. There will always be someone here to listen to you and most times, many ~
I do not have diabetes, I think that may be the one thing that I do not have. I feel very much like a horse today ~ I've been down and out for two days now. Completely wiped out and not feeling much like anything real...
SO GLAD you have found this wonderful forum and in time you will feel very much at home and in touch with some of the most thoughtful, sincere, caring individuals anywhere to be found.
Posted 02 November 2008 - 02:06 PM
Sorry to hear you are having a tough time with the doctors. Will keep you in my thoughts in hopes you will find a caring one soon. I think scleroderma and those of us that have it make doctors uncomfortable. The treatments for it trickle down from other autoimmune diseases which are not well understood either. It's kind of a patchwork medicine in that there seems to be so many diseases in one disease so they treat each one as it manifests itself I guess. I do not have diabetes but wanted to say hello and welcome.
With gentle thoughts.
Posted 02 November 2008 - 05:31 PM
I have an appt with my rheuo doctor tomorrow I'm hoping for some insights, but not hoping too much.
Well thanks again,
Posted 02 November 2008 - 10:16 PM
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Posted 03 November 2008 - 08:26 AM
I am glad you found us! I don't like the cold winters any more either. I was usually the one taking my kids out to the highest hills with our round discs slathered with vaseline ready to come down like rockets off those hills. Now I shudder at the thought of snow and ice.(((( )))) And you're right thank goodness we're not farm animals, I would be gone for sure!
It seems like we all have experienced the difference between a good doctor and a mediocre doctor. One who cares and one who's indifferent. One who's informed and one who thinks he knows enough. After encountering these attitudes, we either keep our doctor or run away as far as our legs can take us. If a doctor gets annoyed by my questions or treats me like a fussy child than he's not worth my time neither.
I hope you're feeling good and, I wanted to say "Welcome!"
Posted 03 November 2008 - 12:13 PM
I'm a little late chiming in...but also wanted to welcome you to the club. Sorry to hear you are having such a difficult time with doctors...but I'm sure you've already learned from most here that the answer is to keep looking for one you connect with and are satisfied with. This is a great forum for support and good advice. Keep posting!