UPDATE

Hi everybody, well 2 weeks ago had a hospital appt with my consultant who gave me news that my lungs are stabilised at the moment, although transference is running at 63 %, I know that's not going to improve but at least it is stabilised!! Had a pelvic x-ray because of pain in hips and groin, oh and she decided I need to take another tablet ( hydroxychloroquine 200mg once a day) Silly me thought it was going to be instead of the mycophenolate but hey, no, its as well as. Oh and then I was blessed with a steroid injection too!! oh the joy of this illness. I have another appt at another hospital in 2 weeks time, this hospital has a team of doctors and nurses who specialise in scleroderma and they are the ones who I am taking part in research with. I have bought myself an electric bike!! Yeah I didn't think I would ever need one, but I have decided this is the only way I can start cycling again.. Well folks I am looking forward to warmer weather and sunnier days.

4 Replies

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  • Enjoy your bike and the warmer weather which is, hopefully, on its way. Also good luck with the scleroderma team. X

  • Good for you on the bike! Keeping in motion seems to help a lot. I am really excited for you that you have found some providers who specialize in it! Major congrats on lungs stabilizing. It is so scary when it feels like they are getting worse and worse. I think for me the shortness of breath has been the worst part. It has been so limiting.

  • Enjoy your new bike and stay as hopeful and positive as you sound. You will be these medical challenges. We all have to maintain faith, hope and pray. I will go into the Cancer Center tomorrow for another 6 hr. iron infusion. This Scleroderma with his multiple complications with my PAH, Raynauds, Congestive Heart Failure, has a personality of it's own, but I try to stay upbeat, get my exercise in and remind myself that there are others who are suffering a lot more. Blessings to you Fairy56.

  • Hello Thelma, thank you so much for your positive reply, I hope the iron infusion went as well as expected. You are right at how complicated Scleroderma is. Although my symptoms increase week by week, I remain resolute that I do not look too closely into what the future may hold, and I take all the medication (as frustrating as it is) that the doctors prescribe. Before I was diagnosed with Scleroderma 5yrs ago, I had been diagnosed with depression a year before, because my husband admitted to an affair he had been having and that he was leaving me to live with the woman, that bombshell left me devastated, and fighting my depression took precedence over everything else. So when Scleroderma was diagnosed it took 2nd place, I still have very black moments, so Scleroderma is running parallel with the depression, but hey there are people who are fighting worse demons than I am. Looking forward to getting on my bike when the weather improves.

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