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My scleroderma is very active right now


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#1 quiltfairy

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Posted 28 May 2015 - 01:41 PM

My scleroderma is quite active right now. My hands hurt really bad it seems to be hitting my joints and when I get up in the morning it is hard to walk at first because my joints in my feet just don't want to work.

I really hate to complain but that is what I am doing. I have help at home at times when either the home health aide is here or the home health nurse is here. She asked me this last week about thinking where I want to be when I cannot walk any more. It is not easy coming up with an answer for that.

 

I live alone so there is not anybody here to help me.The bigger question for me is my babies, my she-poo and husky what about them. My son loves my husky and would love to take her in the truck with him but she is scared of him and very protective for me arround him, so I think they would need to be together a little more before that would happen. This just pains me to think about this.



#2 Shelley Ensz

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Posted 28 May 2015 - 06:00 PM

Hi Quiltfairy,

 

I'm sorry you're having such a very rough time of it, and that you have difficult decisions to make regarding your future living situation. I'm sure you can find good homes for your pets, but it might be a little early to be concerned with it. Many assisted living places and even nursing homes accept family pets these days. In fact that's one of the questions you could and should ask about any potential place, since pets are so important to you.

 

Many people with chronic illness actually flourish when they are in a less demanding home environment!  You might find it amazing to be in a situation where all your needs are anticipated and taken care of, plus with plenty of company and activities. It could be a very refreshing and uplifting change of pace for you, and it might be something to consider doing while you can indeed still walk.  In fact, you might get enough physical therapy that way to actually improve.

 

Remember, with scleroderma, its never over til its over.  The illness can stabilize or turn about at any time. There is no such thing as natural, inevitable progression, but rather a normal course of waxing and waning, even without any treatment at all.  During spells when I seem to be worsening, I try to cheer myself up with the thought that it simply "must mean" that improvement is just around the corner!  It's natural. It's expected.  And that helps keep my spirits up and perhaps even has some slight influence in bringing about bits and pieces of improvements. Who knows?  All I know is, it does make me feel good to think like that, or at least better than if I felt it was all doom and gloom and a downhill slide all the way.

 

I imagine you're probably just feeling pure dread at the thought of any sort of change right now.  If you start perusing all your housing options though, you might find yourself intrigued.  Set up tours.  Visit during meal times so you get to see if the food is any good, and how cheerful the residents are. Avoid the centers where everyone is zoned out and drooling in wheelchairs, and gravitate towards the ones that have a full schedule of activities, or at least a few things you might enjoy.

 

The best thing about any new housing is that, no matter what, you'll still have us and all your friends here in Sclero Forums will be rooting for you to make a good adjustment. I'm sorry the thought of any change is even necessary, but it is one nearly everyone faces if they manage to live long enough, or live through enough, so in that sense, you are definitely not alone.

 

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Warm Hugs,

Shelley Ensz
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The most important thing in the world to know about scleroderma is sclero.org.

#3 Joelf

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Posted 28 May 2015 - 07:55 PM

Hi Quiltfairy,

I'm so sorry to hear that your Scleroderma symptoms are worsening and you're having such a problem with day to day living. It must be very hard to decide what to do for the best, especially regarding your dogs; I do understand, as I would be very sad to have to rehome our spaniel, if we could no longer look after him. It would be very unsettling for the dogs as well.

Perhaps, as Shelley has said, it may be possible to find somewhere where you could take the dogs with you? I'm not sure if this is the same in the US, but in the UK, there are warden assisted homes for disabled people, whereby someone is on call if needed, but you still have your own place (with your pets.) Of course, a lot depends on how the disease progresses; sometimes, as Amanda has described in her latest blog, Scleroderma does have flares and then it stabilises and becomes a little easier to deal with.

I do hope that you will be able to decide what to do, should your need to move arise. Remember, however bad you do feel, we are all here to help and support you; also we do understand how debilitating and frustrating this complex disease can be.

 

:hug-group:

Best wishes,


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#4 Amanda Thorpe

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Posted 29 May 2015 - 09:16 AM

Hello Quiltfairy

I am really sorry to hear this. Having just escaped from a major flare, I wouldn't want it for anyone else. Ever.

Shelley is quite right, the path of scleroderma is by no means certain.

Although my flare's ended, I am still wheelchair dependant, using a stair lift and commode. Although fatigue is better and pain better, (thanks to foot ulcers healing) I am still disabled and reliant on my husband and others on a daily basis.

I also reckon that your beloved pets give you more than you realise. When our beloved pusscat joined our home she made a tremendous difference to my quality of life and continues to do so although I have to admit that during my flare I had help caring for her when my husband was out (no one told our cat she was supposed to be a self sufficient species) so I get the concern about taking care of your dogs.

Other than check out the possibilities for your future what else can you do? Perhaps you could consider help with your pain levels because not all options are narcotic based?

Thank you for sharing this and I didn't get a sense of complaining but rather a sense of someone taking the control that's available, unprepared to simply roll over, someone determined to have the best future they can and I hope that you do and that we're part of it.

Take care.
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#5 quiltfairy

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Posted 29 May 2015 - 10:56 AM

Thank you guys for a quick response.

I found out that my weaver and Medicare and Medicaid will pay for a full time person to be with me at some point, which is hopeful. I would have to be taught how to transfer myself but I could still live a basically independent life. I think my nurse was getting ahead of things and it scared me. My sclero expert said I would still be able with some assistance to live on my own.

i often times look back at my Tony, my little she-poo, who has been through so much and has saved my life on more than one occasion. When he was a year old he was attacked by a pitbull in a rest area in Iowa. He suffered four holes in his bladder, plus a hole in the tube that ran from bladder to kidney, and he had a hematoma above each kidney. He had a mild heart attack four years ago, when he was kicked by my ex-husband , and he was in the vet hospital for two week to see if his kidneys would once again repair itself. And yes it did, but he was an expensive dog for two years. Last year he suffered a stroke and did not even know his name but he has once again learned his name, where his food is, and all his little tricks. So if he can go through all this and be fine at fourteen years of age, I can have the strength to struggle through this

#6 Joelf

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Posted 29 May 2015 - 07:43 PM

Hi Quiltfairy,

I'm really pleased that it's possible that you will be able to live independently for a while and then that would mean that your dogs could still be with you. Tony sounds like a real survivor and fourteen is a great age for him; obviously he's a tough little chap! Sadly, we lost our much loved black Labrador recently; he was fourteen and unfortunately, like a lot of the larger breeds, he lost the use of his back end and was doubly incontinent. My husband had to support/carry him around......not easy with 35kilos (80lbs) of solid dog!

Best wishes,

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#7 Amanda Thorpe

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Posted 31 May 2015 - 12:03 PM

Oh, why do they do it to us!? These blessed "little" creatures that move into our homes and hearts...okay I know most people actually move their pets in but not ours, she moved in...and once established rule the roost then break our hearts when they die.  My previous cat was blind in one eye, deaf in one ear, had bad teeth and they smelled it but he was too old to have surgery and let's not forget the kitty alzheimer', I kid you not, we had him for 17 years whilst he decomposed and then died. That's how he smelled anyways but still slept on my pillow and I never had the heart to protest.

 

Quiltfairy I am so glad your dog has thus far survived. What they bring to us whilst with us, however long or short is priceless. Yeah, I know you could say that about some vets bills too! :lol:  :lol: 

 

Take care.


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