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Disappointed, first signs of hand sclerodactyly

Sclero is progressing

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#1 Kathy D

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Posted 18 March 2014 - 11:47 PM

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,

 

Kathy


Diffuse Scleroderma Diagnosed March 2009

#2 Joelf

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Posted 19 March 2014 - 08:26 AM

Hi Kathy,

 

I'm very sorry to hear that some of your Scleroderma symptoms have worsened and you're developing Sclerodactyly. Thankfully, I don't suffer with this, but in the beginning, my fingers were very swollen, so much so that I spent an absolute fortune having all my rings resized, only to find that they had to be resized again, when I started taking medication which reduced the swelling and my fingers went back down again!  :rolleyes: 

 

Certainly fatigue is a very real problem with Scleroderma and you really shouldn't blame yourself if you can no longer do all the things that you could. I know many of our members suffer crippling fatigue and again, I found that to be one of the worse things to cope with, being normally very energetic and full of go; thankfully, once I started taking my medication, I found that I did recover a lot of my energy. Your husband sounds an absolute saint; how lucky you are!   I sometimes think that our husbands/partners don't realise how much we do appreciate them!  I do hope that your interviews go well this week and that you're able to find someone to help you, so that you can concentrate on your lovely husband and baby. :)

 

Kind regards,


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#3 miocean

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Posted 19 March 2014 - 10:47 AM

HI Kathy,

Having experienced all the things you are going though I can understand how frustrating it is! The best thing I did when my fingers began to curl was to go to Occupational Therapy. I have a wonderful hand therapist who worked with me off and on (mostly on) for 5 years. Although my fingers are curved, I can hold things and make a fist now. It is a big commitment in time, but do you think your rheumatologist would write up a prescription for Occupational Therapy? If you can't spare the time to go somewhere there are hand exercise videos online you can do at home. I went through the same thing Jo did with rings but had them sized more often and now have guards on some to make them smaller in case my fingers swell again.

 

I also learned to let go of some things. Yes, I would like everything around my house to be perfect, as I am a little obsessive/compulsive about things being in the right place. I have accepted that it won't always be the way I want it. I have two friends, neither who suffers from a chronic illness, who have accepted the fact that they are not great housekeepers. Their philosophy is if you come to my house you are coming to see my or my family and that is more important than how my house looks. 

 

My husband says, "I shop, I chop, and I mop." And he does. Since he is doing all these things, I don't complain that it is not done the way I would do it (unless I am having a prednisone anger moment :lol: ). Lately he has been spending a lot of his time taking me to all day medical appointments. When I thanked him today for all he did yesterday he replied, "That's what I'm here for." Try not to feel guilty. There are many ways you are doing things for him that you are not even aware of.

 

Save your energy for things that are really important, like that baby of yours. My little nieces don't understand that I can't lift them up or run around with them, so I do other things to make up for it. We engage in more quiet play and art activities.

 

Thanks for posting and updating us all.

 

miocean


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#4 Kathy D

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Posted 19 March 2014 - 09:06 PM

Jo,

 

Please accept my deep thanks for your reply.  I can't tell you how helpful it is to hear your kind words. 

 

I too had my wedding ring resized too many times and I finally gave up though I will look into the clasp retrofit posted on the site here for my new ring.  Sadly I lost my wedding ring while moving to our new home, I had not worn it for several years and it was loose in a box, how silly...  My 20 year wedding anniversary is this summer so I am guessing I will get an new one or I will buy one lol. 

 

I think the word fatigue is too mild for how drastically it altered my life, I keep trying to come up with a more sinister word but I have not found the right one after years of thinking on it.  My family always asks my husband " why isn't here!?!"  He returns and tells me they just don't understand though we have tried so many times to explain it.

 

I am currently on medications for 5 years now though my sausage fingers have never subsided (except during my miracle pregnancy).  My feet are also swollen most of the time, even when they are purple and blue and cold.  Thank goodness dear husband is willing to shop for bigger shoes/slippers for me over the years as it is too taxing for me bathe and dress then to drive to town and back home.  He brings home several pairs and then returns the ones that don't fit my needs :)   My fingers are odd to look at, slim at the very bottom where a ring would rest, then fat and swollen the rest of the way up,  and yes I have difficulty using them especially after waking in the morning, they are just too swollen and painful to bend and grip things.

 

Thank you for complimenting my husband, yes he is one in a million and I am so grateful we crossed paths.  I tell him that too!  He is also a one in a million father to our baby.  I am embarrassed and proud at the same time that she calls him "mommy" sometimes.

 

Both my house keeping interviews had to be rescheduled due to bad weather, but I have high hopes that once I choose and we get going that it will improve our lives.

 

Thanks Friend,

 

Kathy


Diffuse Scleroderma Diagnosed March 2009

#5 judyt

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Posted 20 March 2014 - 12:28 AM

Hi Kathy,

 

Your story sounds so familiar.   I think there are many of us here who have had the same issues at one time or another so we really do understand.   We also understand the frustration of being asked all in one breath " How are you at the moment you LOOK great!!"

 

Of course we look great, who wants to go out socially looking the way we feel, sack cloth and ashes is never a good look.   I always try to have my hair looking as good as possible, I wear colours which suit me and styles which flatter and I am sure you do too.   Trouble is by the time you get to that stage you are often too tired to do anything much except sit down and maybe doze off.

 

As Jo has said, an understanding husband is worth his weight in gold and diamonds and without them where would we be?   My husband will do all sorts of things except cook and clean (apart from mopping up a disaster), but he is happy for us to have home help every week to clean the bathroom and vacuum through and if he does the shopping I can manage a dinner most nights so we rub along quite well.

 

As for the fatigue, I have for a long time called it 'overwhelming fatigue' and that description usually gets the enquirer thinking :emoticon-dont-know:.

 

Best of luck in finding good home help, I have had quite a number of different people over the years, but have always been lucky enough to find somebody reliable and honest and that's the important thing.

 

Judyt



#6 debonair susie

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Posted 21 March 2014 - 07:38 AM

Hi Ladies!

 

GREAT posts!!

OH yes...... we DO know and can relate to the "sausage fingers", hence the typos (those who are at chats know VERY well what I am saying ;) :P lol)

 

Kathy, I had THOUGHT about having my rings re-sized, but instead, I got the ring insert, for the times my swelling subsides; I was also inclined NOT to wear them, though I didn't care much for that either.

 

As for the fatigue, it's important to "listen" to your body and rest when needed; THAT was hard for me to start doing, but quite necessary to do...we get SO wiped out SO quickly, without a doubt! We must do what we can do (that's taking care of ourselves) and the things we cannot do, we (after time) accept.

I too, was a VERY good housekeeper...as a matter of fact, I used to clean houses for others while my children were in elementary school! However, once Scleroderma got a HOLD on me, I REALLY had to re-vamp my thinking...what I COULD/couldn't do. The Spoon Theory is something EVERY ONE should read and live by!

 

Judy, you brought up that folks who aren't aware of our illnesses say we look so good/GREAT! You hit the nail on the head, in that by the time we get groomed, we are spent!!

There was a time when I could do EVERYTHING I felt needed to be done...make it to all activities of grandkids/kids, but just can't do it any more. Judy, as you say, there are OTHER things we can do with the grands that require less energy and have that quality time; we're innovative enough and can love that special time with them; Kathy, same for your family...enjoy them! :emoticon-hug:


Special Hugs,

Susie Kraft
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#7 Sweet

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Posted 22 March 2014 - 08:10 AM

Just wanted to send out hugs all the way around. Love each of you.  :emoticon-hug:


Warm and gentle hugs,

Pamela
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#8 debonair susie

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Posted 25 March 2014 - 03:23 PM

You're "Sweet Pam"!! Love you too, :emoticon-hug:  of COURSE ;), along with ALL our peeps!  


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#9 Kathy D

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Posted 25 March 2014 - 08:30 PM

HI Kathy,

Having experienced all the things you are going though I can understand how frustrating it is! The best thing I did when my fingers began to curl was to go to Occupational Therapy. I have a wonderful hand therapist who worked with me off and on (mostly on) for 5 years. Although my fingers are curved, I can hold things and make a fist now. It is a big commitment in time, but do you think your rheumatologist would write up a prescription for Occupational Therapy? If you can't spare the time to go somewhere there are hand exercise videos online you can do at home. I went through the same thing Jo did with rings but had them sized more often and now have guards on some to make them smaller in case my fingers swell again.

 

I also learned to let go of some things. Yes, I would like everything around my house to be perfect, as I am a little obsessive/compulsive about things being in the right place. I have accepted that it won't always be the way I want it. I have two friends, neither who suffers from a chronic illness, who have accepted the fact that they are not great housekeepers. Their philosophy is if you come to my house you are coming to see my or my family and that is more important than how my house looks. 

 

My husband says, "I shop, I chop, and I mop." And he does. Since he is doing all these things, I don't complain that it is not done the way I would do it (unless I am having a prednisone anger moment :lol: ). Lately he has been spending a lot of his time taking me to all day medical appointments. When I thanked him today for all he did yesterday he replied, "That's what I'm here for." Try not to feel guilty. There are many ways you are doing things for him that you are not even aware of.

 

Save your energy for things that are really important, like that baby of yours. My little nieces don't understand that I can't lift them up or run around with them, so I do other things to make up for it. We engage in more quiet play and art activities.

 

Thanks for posting and updating us all.

 

miocean

 

 

I couldn't have written that better myself miocean!  My husband says "It is what it is....."  and both husbands are sooo right. 

 

Thank you for the kind response. I truly hear and appreciate the care contained in these messages even be it via internet :)

 

As you explain to your nieces I too try to explain to my 2.5 year old.  I am so grateful that dear husband transports our daughter to and from preschool, it is a very good school with many teachers in one room and they give her running, swinging, SINGING (oh my she loves to sing) and so many other activites that I am not able to.

 

My husband cleans in his very own inventive way, and I am grateful for it.  Yes the clutter is piled upon the kitchen table for me to take care of but frankly he scrubs much harder than I can to clean the surfaces under the clutter!  And between dogs and a toddler the surface grime accumulates quickly...  Big kudos to him my sweet heart for doing it when he can.

 

I have followed your challenges the last several years, I feel for you and what you have gone through.  And in the same breath I want to thank you for finding the energy to repond to my post.  Bless.

 

KD


Diffuse Scleroderma Diagnosed March 2009