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JaneLesley

Lost for Words

20 posts in this topic

I cannot tell you how grateful I am for this forum and the comfort I receive from it.

 

I am currently suffering from very swollen tight fingers with lots of pitting - fingers are sore, swollen wrists and forearms.

 

My face is stretched very tightly and slightly puffy making my left eye in particular very uncomfortable.

 

My ankles and feet are swollen. My toes hurt.

 

Everything is aching and on Sunday it took me all day to get washed and dressed. I felt so exhausted the smallest task became impossible.

 

I attended my weekly hand clinic at hospital yesterday and after my treatment was asked to attend an assessment with a senior member of the OT department.

 

My hands are the only thing receiving any attention and when I started to explain about my other problems was told that I was very lucky that I had Limited Scleroderma and not the proper version!

 

I know we are mean't to try to educate people as we go along but I was totally at a loss for words, gave up any form of discussion and left.

 

Is anyone else out there feeling as lucky as I am?

 

Very warm hugs to all - and thank you for being out there.

 

Jane

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Hi Jane

 

Ooh, poor you; you are having a rotten time of it and I'm so sorry.

 

I think I read in your earlier posts that you were seeing a Scleroderma specialist (link here should you need it.) I would therefore have expected them to give you help and support rather than making a factious remark when you had come to them suffering with a lot of pain and fatigue. Their comment was insensitive to say the least :angry: and not what you wanted to hear! :unsure:

 

I've been very fortunate with my consultants and doctors as I was referred very quickly to specialist hospitals where they knew about Scleroderma and realised the gravity of the illness and I've always been treated with kindness and consideration. The only problem I ever had was with a practice nurse at my doctor's when I wanted to get the 'flu/swine'flu jab last year. She had never heard of Scleroderma and gave me the impression that she thought I was making an unnecessary fuss. Needless to say I put her right on that score!! ;)

 

At least, Jane, you have been lucky in as much as you've found these forums where you know you can always be sure of a knowledgable and sympathetic ear, should you need one! :emoticon-hug:


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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Hello Jane

 

Lucky to have the systemic form of scleroderma...yeah right! Yes I am afraid that there will be a parade of this over the years, just smile and wave baby, smile and wave.

 

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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Hi Jane,

 

So sorry to here of your issues, it is difficult enough living with the problems we have to face daily, without having to put up with comments like that. I too have the limited form and I am fortunate enough to have very little skin involvement, (only thickening in my fingers and ankles at the moment) but there is no `just having the limited form' about it, I'm often told how well I look now (compared to a couple of years ago), but this is only because I have gained weight, people can't see all the damage that is going on on the inside or know how exhausted or poorly I feel sometimes. But because I look well they assume I'm getting better. Careless flippant remarks like that can be very damaging to our mental health, making us feel that we are making a fuss about nothing, that we are a nuisance, wasting valuable time etc etc. At the end of the day this disease takes away so much from us, but we still have a voice and we still need to be heard, don't be put off by this person's lack of knowledge and attitude towards scleroderma and also don't be tempted to ignore possible symptoms through fear of making a `fuss'.

 

Take care

 

Sandy B

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I have great sympathy for you to have to deal with that unkind and foolish remark. When something like that happens to me, I tend to stand there like a deer in the headlights , not reacting. Of course I have a bazillion clever and insightful remarks that occur to me at 2am the following morning.

 

But in your case, I think that I might mention the effect that offhand remark the next time I saw that person. Not only was it thoughtless and wrong, but you are their customer- the source of their livelihood- and deserve better from them.

 

I remember one physical therapy clinic that had a sign posted "No Whining." I had a really hard time not immediately going "waaaaaahhhhh" just to be difficult.

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I had a similar thing, I just got diagnosed with Limited Systemic Scleroderma about two weeks ago, have had Lichen Sclerosis for years. After 2 months of tests and hospital stays, I thought well at least I know what I got and there is something they can do for me Yay!

 

Well so much for that, :lol:, I got told yep we knew this is what you had all along but you are lucky it could be a lot worse. I thought you must be kidding, I have constant pain in my abdominal muscles whenever I bend over or try to get dressed, I am so tired I can hardly think half the time, my fingers have gotten so tight I can hardly write my name and do things like I used to, my cuticles crack and bleed, my Raynaud's causes my hands and feet to go numb constantly. I can't walk more than 30 metres without severe pain, and I recently lost my job due to my sickness. Well lucky me! :lol: makes you despair and when I called to ask about the pains I got told that at my age I should expect some pain as common wear and tear. So here I sit, stuck in my house, depressed, and thinking what if I wasn't so lucky. :(

 

Jean

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Hi Jean

 

Welcome to these forums!

 

I'm so sorry to hear that you've been suffering such a lot of pain and experiencing so many unpleasant symptoms. You haven't said whether you're being dealt with by a Scleroderma specialist who ought to help you as they should understand the complexities of this bizarre disease, but if so it sounds as if your consultant comes from the same charm school as Jane's! :( It's a shame that they could not show you a little more thoughtfulness and compassion; however, you have at least joined our community where you will be amongst understanding people who can empathise with what you are going through.

 

We have a link to Lichen Sclerosus here which I hope you'll find helpful and informative. We also have advice on emotional adjustment and coping with the depression that unfortunately often accompanies a chronic illness like Scleroderma.

 

Do please keep posting and let us get to know you, particularly if you're needing a broad shoulder or a comforting ear! :emoticon-hug:


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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Jean,

 

I am so sorry to hear that you are suffering so much and not getting the deserved sympathy and attention you really do need.

 

I hope you will keep posting - everyone here is really kind and I know when things get bad there is always someone with a useful tip or some kind words just when you need it the most.

 

I have just spent a further two days off work feeling awful - painful feet, hands and neuralgia to go with it.

 

Guess that is the price for being lucky isn't it!! Somehow I think I would probably have preferred to have won the lottery though!

 

Take care - and keep posting

 

Jane

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Hi Jean and Jane,

 

Welcome to Sclero Forums, Jean! Now I have to say we are all really lucky because we have you in our midst. By now we have a whole veritable team of extremely lucky people! Lucky to have scleroderma?

 

What do you say to something like that, anyway? "Yes, I'm very lucky, and glad to see that your frontal lobotomy was a total success," or, "Yes, imagine, I had entered the Sickness Lottery in hopes of getting just a common cold, but I won a massive case of systemic scleroderma that makes me feel every minute like the walking dead. Lucky, lucky, lucky, that's me!"

 

I suppose that's out, eh? Well, this Charm School that Joelf so humorously mentioned, maybe we could make a Sclero Charm School. Jane can step up to the plate as Professor but Joelf will have to be Principle. Having survived a "No Whining" sign, Enjoy has earned a spot, as well.

 

I'm going to need to enroll as a student in the Sclero Charm School. Last week, my husband and I started his-and-hers matching physical therapy for our right shoulders, mine for post-op of the rotator cuff surgery. I met with our PT first, and then was taken off to this fancy icing machine, which was a large contraption over my shoulder.

 

When my husband was called back, he passed me, and he looked rather alarmed, as though they had put me in a restraining jacket. So I yelled out, loud enough for everyone to hear, "This is torture! Run, baby run, run while you still can!"


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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Thanks for the nice welcome everyone, it's nice to have people who understand what is going on. As for my specialist, I have 4 I think at the moment :lol:, two are the Scleroderma/Connective tissue specialist, which is one that said I was lucky. I am still waiting an appointment with a new Dermotologist as they are supposed to be the best for treating my Lichen Sclerosis. Been having a really tough week, all of my problems and pain has made me pretty much housebound. Also my blood pressure appears to be high now and have been started on some medication, it makes me really dizzy. Or it could be something else, I have no idea if the symptoms I get are related to the Scleroderma or something else. Not due to see the specialists again for 3 months, and being NHS who knows when I will get to see the new specialits. I am supposed to be on some medication for my Raynaud's but they said they sent the information to my general practitioner for him to administer it, but no word yet. Sigh hurry up and wait that is my life now. But again thank you all for making me feel so welcome, and listening to my 'whining' :thank-you: Jean

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Hello Jean

 

Welcome to the forums oh yes and er, um your luck! :lol:

 

The UK Scleroderma Society has various local groups that meet throughout the UK and they also have a helpline, 0800 311 2756, available for support. I host a support group for Essex and meeting with other sclerodermians is invaluable as I too am basically housebound.

 

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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Thanks Amanda, I have gone to that site as per my specialist it is the only one he says I should look at, he warned me not to look up my condition on the Internet as it would just scare me :lol: Well I never listen to what I am told and am glad I didn't as I would not of found this site and you kind people. But back to the Scleroderma site, I checked the local groups and there doesn't appear to be any in Leeds, the closest is Manchester. If anyone knows of any please let me know, or maybe I can see about putting together a group, I like to organise things and it would give me something to do. I missed yesterday's chat session and have posted myself a reminder on the computer (have to have lists for everything these days!) so I can catch next weeks. Not feeling so sorry for myself today so that is a step in the right direction :rolleyes: Jean

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Hi Jean,

 

Welcome to the Forums, lucky you! :lol:

 

Another of my favorite comments is: "All things considered, you are doing remarkably well." Or there is that stopper: "You look really well today, the roses are just blooming in your cheeks." Of course I had a fever and felt like death lightly warmed over, but hey, it's always nice to know your colour is good!:P

 

I'm glad you joined - we have lots of laughs together and aren't serious all of the time. It's great to have people who really understand, isn't it.

 

Best wishes and happy posting,


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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I also have systemic sclerosis, with difficulty with my fingers, gastro intestinal tract etc..... but in August last year was diagnosed with pulmonary hypertension, after spending a year not being able to walk 30 yards! The Freeman Hospital in Newastle upon Tyne have been marvellous. I am now taking Ambrisentan. It was a toss up whether they gave me this drug or steroids and anti-inflammatory drugs but after three months the difference was remarkable!

 

All I want to say is there is hope! Keep on trying, asking and questioning until you get what is right for you.

 

Tina

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Hi everyone, just wanted to update I have been having lots of pain in my torso area and abdominal muscles, I called the specialist nurse and told her about them and she told me that they were probably gastric problems and I needed to see my general practitioner and ask to get a colonoscopy or Cat Scan of my abdomen, she didn't think it had anything to do with the Systemic Sclerosis. So I went to my general practitioner and told him of the pains I was having, and he examined me and said that it wasn't gastric that my pains were in connective tissue points and that I would need to discuss this with my specialist. So I called the nurse back and told her and I was given a 'rush' appointment, got the letter today and it is in March, not so much on the rushing! I kinda feel like a kid that goes to ask mum something and is told go ask your father. :closedeyes:

 

In the meantime I just guess I will have to cope with the pains and hope for the best when I get my appointment.

 

Cheers

Jean

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