I visited my trusted and proven rheumatologist in February 2014.
I asked him about the bases of my fingers looking much smaller than the swollen upper 2/3 rds of my fingers. I said the rings I previously wore can account for my "ring" fingers on both sides but what about the other finger bases? I asked what he thought and he replied likely "sclerodactyly".
Too bad. I have debilitating fatigue and joint issues for many years now but my disease has not shown a lot of other recognizable signs besides my face and upper lip until now (which the general public can't pinpoint). Then I was blessed with a very long (almost in remission period after having my beautiful (and still perfect!) miracle baby despite doomed infertility). I guess I was trying to be in denial of my scleroderma. Though none of us were ever was able to ignore the severe fatigue...
My loving husband works so hard, he has replaced my income all by himself. Now he is our only income and it just doesn't seem fair, I earned a decent income before scleroderma! No Joke, I worked side by side with my husband for almost 20 years so we both know each other's potential. Before I was sick I kept a clean comfortable house! I cooked delicious meals! Many mornings now he dresses our baby, transporting and dropping her off to preschool in the morning then works a full day plus picks up grocery items and then the baby. He returns home and cooks, feeds myself and our baby and then cleans when he has any energy left. It's just so much to ask of one person, but he carries on. I wonder for how long. I feel so lucky I married a wonderful man and so guilty at the same time that I am sick.
My mothering, hygiene and house keeping are all far below my aspirations. My darling baby knows I can only dance with her if I am sitting on the floor (I use my hands and fingers to wave around as long as they don't get above my head where they sting and burn). Our house is a disaster and I struggle to give my husband clean clothes, and yes, I smell! I did not smell until my thyroid went hyper but now the smallest happenings make sweat in all the wrong areas and it doesn't smell great, but I struggle to muster the energy it takes to bathe, dry and then redress.
We recently moved and we now have a much smaller mortgage. Our new home is not as pretty as our old home of 20+ years but it is solid and safe and he keeps it WARM for me :) It is quite old and has stood for so many years, so I feel safe here. One of the perks from a smaller mortgage is now I can afford for someone to help me clean for 2 hours once per week. How wonderful! I have two people to interview this week. I would love to have someone help me so my husband can come home to a clean house and maybe even a cooked dinner! I hope that with some help with house keeping I can do more basic things like I used to such as cooking, laundry and bathing....I hope.
Thanks for your kind ears and replies,