quiltfairy

New to this disease..

31 posts in this topic

Hi Quiltfairy,

 

I'm so pleased to hear that your medication is helping you and that the side effects have settled down.

 

It should certainly help you to be treated by a Scleroderma expert and I'm really hoping that things will improve for you now. :)

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Thank you, I am sure things are going to get better. The way things have been going I have been wondering how much longer I can live alone and take care of this house.

 

One day things are going great, the next I can hardly walk and it goes back and forth; this is why I am going for a second opinion. It cannot hurt and I hear that this doctor will work with my doctor here in Mapleton. I see this new doctor on Wednesday, than I see my neurologist the next week; I have two bone spurs in my neck where I had a previous surgery for a ruptured disc . The doctor is thinking that the bone spur is rubbing against my spinal cord and that is what is causing the headaches; it means more surgery but if it helps I guess I am willing.

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Hello Quiltfairy

 

One of the hardest things about scleroderma is living with it! It can be so unpredictable and the only things you can predict are that you will be fatigued beyond belief.

 

One day good, one day bad, one day good one week bad, one month a write off! I would like to be able to say it follows a set pattern, it doesn't apart from it being guaranteed that overdoing it will floor you. Without exception.

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi,

 

I used to wonder how I would get on when I am older.   Fatigue was such an issue in my life, along with the faecal incontinence which came with my Systemic Disease.

 

I would do what I could to keep fit, having been more active than average in my teens.   I brought up my two children, established and looked after a nice garden.   Did my bit to help out at the children's school, all the usual things.

 

Bit by bit over the years various surgeries and hospitalisations slowed me down but I would always bounce back.   Until February 2012 when suddenly I had a total internal blockage and spent most of a month in hospital after emergency surgery.   From then until today I have never bounced ANYWHERE :crying: .  

My 70th birthday has come and gone, our 50th wedding anniversary is looming and I struggle along running behind while my life bowls on ahead of me.

 

What I am most thankful for is that my dear husband is still well and he holds the place together.   I can do the laundry, prepare and serve our meals, entertain friends when they call and entertain myself (mostly by sleeping!!)    I can still drive the car and take myself anywhere I want as long as that place is easy to negotiate once I am out of the car again.   I am a Quilter and right now I am away on Retreat with 9 of my friends, and even here they have to help me, several of them are over 80!! and they are running around after me.  If it wasn't so ridiculous it would be tragic.   I repay their help by driving them around but I couldn't join in without their agreement.

 

And the other thing is that I know full well that I am much better off than many others on this site.   I live the life of Riley in comparison.

 

I have a plan for the future if the worst happens and I am left on my own, and than involves moving myself to an assisted living establishment.   Definitely one where people have fun and 'do' things.   If I had been on my own prior to this I would already be there, no way would I be coping on my own.    I have no illusions that it is good for me to battle on and try to do more for myself, I can't and I don't want to be a martyr.

 

Good luck and best wishes to all of you

Love

Judyt

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Quiltfairy, have you seen an gastroenterologist yet for your swallowing difficulties?  That is one of my main symptoms right now, and I HEAR YOU. It drives me crazy too!  I am going in tomorrow for an endoscopy to see what they can see.  My doctor said they might do a esophagus stretch.  I have read it is a fairly common procedure, but I'm still nervous because I have never been put under before.  One day at a time.  Keep looking for the best doctors and support you can find because everyone deserves it. 

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I saw the sclero doctor today; there was a lot to take in. He was concerned about the loss of hair on my arms, I am not sure why; he also talked about a bone marrow transplant for lung problems in December. I have more tests to determine exactly what form of Sclero I have; he is doing a MRI on my muscles to check for swelling inside the muscles and a pulmonary function test and also a echocardiogram for my heart. He was concerned about the problems with the muscles and that possibly they are not getting enough oxygen; now I am really scared.

 

I had a driver but I really don't want him again; he talked all the way there and all the way back and he gave me no chance to process all the info on the way back with his insensitive talking about his past jobs. It wore me out worse than seeing the doctor; when I told him I wanted to take a nap in the van I laid my seat back and he talked even louder! I think he just want to hear himself talk. Sorry about the ranting.

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Hi quiltfairy,

 

Sorry to hear that you found your visit to the Sclero doctor today to be frightening.   The sort of things that you describe him talking about, in my opinion, are the things that most of us here are used to hearing.

 

There are many many different ways that Scleroderma can affect us and we are, each of us a unique example.  The thing is to find somebody who knows about all these different things and is prepared to check each and every one out one by one.

 

I have had Sclero for many years as you will know if you have read my other posts and still I am learning about aspects which could be, or are in fact, affecting me.

 

My muscles seem to let me down on a daily basis and still no answer is popping up but I have not given up on maybe finding something that will help.

 

My lung function tests show excellent capacity and very low quality gas exchange.   The Respiratory Specialist's opinion is that my lungs are fine but the blood vessels which are part of the gas exchange are affected so I have to take 3 breaths to get the same input of oxygen as the average person my age.  That is what Sclero does to us and if you know what is going on then we are in a position to accept it.

 

I hope you are able to calm yourself down and wait until the tests have been done and see what turns up, if anything.

 

Best wishes

Judyt

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Hi Quiltfairy,

 

Unfortunately, it can be alarming when you have your appointment with a Sclero specialist; it can help if you are able to take a friend with you and can jot down the salient points, as it can be rather overwhelming at the time. I do hope that your test results will be okay and help him to arrive at a diagnosis and thereby be able to advise you of the best treatment.

 

I'm sorry that you had Mr Sensitive driving you to your appointment and back again; it never ceases to amaze me how thoughtless some people can be, especially as he must have realised that it was a hospital appointment, not a social outing!! It's difficult in those circumstances not to appear rude; perhaps next time, if you have that driver, you could simply plug in your music player and sit there listening to some soothing music, oblivious to his chatter!  ;)  ^_^ 

 

Kind regards, 


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hi Quiltfairy,

 

My goodness, did you ever have a productive time with the scleroderma expert!  In the beginning, it can all make your head spin, can't it?  I know it is alarming to have more questions raised than answered in the beginning.  It sounds like you're going to be in for it, for a spell.

 

I will be sending lots of good wishes your way, and rooting for you as you go through the tests.

 

You could try bringing ear plugs or headphones for your next trip, to and fro. Even if the headphones aren't plugged into anything, nobody will know. I know what it's like to need time to process things. It's okay to do whatever is necessary to claim your quiet time and you have our permission and encouragement to do so.  After all, it looks like you are headed for *lots* of trips so they might as well be as pleasant as possible.

 

:emoticons-group-hug:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

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

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Thank you all for your kind thoughts. 

 

My next visit is set up but not with the same driver, my son can drive me and he can go in with me to take notes. He and his wife have volunteered to be bone marrow donors and I am pretty sure that my son will match as he is also O negative.

 

His wife has also volunteered to do anything to help, I think she will be staying at my house and watching after the dogs.  I have a husky mix and Shar Pei and  since I cannot afford to kennel them it would be a great help.

 

My aunt has also given me a solution, she lives about half way between here and there so I could spend one or two nights with her and her husband .

Thanks for the warm hugs, they are greatly appreciated. I am sending some back to you :emoticons-thankyou:  :thank-you: this is the best I could do I could not find

the warm hugs.

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Hi Quiltfairy,

 

That is a more positive story, it is so good to be able to find a way around difficult things and get the help you need.

 

To find more emoticons, click on the smiley face and that brings up a list across the bottom of the screen, then click on Show All.

 

Best wishes :emoticon-hug: :emoticon-hug:

Judyt

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Hello Quiltfairy

 

It's a guess but maybe the interest in the hair loss on the arms related to tight skin? I lost all the hair on hands, feet, arms and legs when they were covered with tight skin. It just all fell out and I never noticed at the time and get this, when the skin softened it grew back...long and black...because that is just what a woman wants on her limbs isn't it?!

 

Go with the earplugs or earphones and speak up and say "I am devastated and wish to process this in peace so please stop talking. I just know you'll understand what I am saying as you do this job regularly and so well." You're going to have enough on your plate managing your own feelings without worrying about those of a total stranger who is getting PAID to drive you!

 

The phase you are in, the fear phase, will eventually move into another and where you are will soon be a memory you share with others on the forums, who will then find themselves, where you are now. 

 

Take care and keep posting.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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The fear has been helped with this site because I now know what is going on with my body.

 

When I was first diagnosed no one seemed to know anything about the illness just that it was a rare disease; I was really scared at that point not knowing what was going on. It is bad when your doctor does not know what to expect; she only had one other case of it so I got on the internet. Some of the things you can read can be very scary and I have found a lot of them to be untrue, so thank goodness for this site where I am learning the truth. I also gave this website to my doctor and my therapist and to the physical therapy department; they all said it was very informative.

 

My son is taking time off work to take me to my next appointment; any others I have to drive to, I can stop half way and spend the night with my aunt.

 

I had a talk with the young man that took me last time and he just did not seem to get it. He said he had a great time and was looking forward to my appointment in December. I informed him at that point that he would not be driving for me again; he also stated to me that the reason he drove was for him to go and visit a friend that worked at the university as I understand his parents are the same way. I also found out that he does not have a driver's license and that the one he showed me was a fake one. I have not reported that to the police but maybe I should.

 

Thank you all for the responses; they have been very helpful  :D  :D  :D  :D

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Hi Quiltfairy,

 

Quite apart from breaking the law, I think I would feel very worried being a passenger in a car where the driver had a fake/no driving license and surely this would mean that he's driving without insurance as well? I would certainly report him; he could be a danger to himself and other road users and shouldn't be driving around at all, particularly taking passengers.

 

I'm so pleased that you and your medical team have found our website and forums helpful and informative; that's what we're here for!! :emoticons-yes: 

 

Kind regards, 


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hi Quiltfairy,

 

I'm delighted that you are rounding up more help and support.  It sounds like everyone is pitching in with what they can, which is fantastic.

 

:emoticons-group-hug:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

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

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