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#1 goodluckkitty

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Posted 22 March 2013 - 05:04 AM

Where to begin? Well, this not-so-fantastic voyage began about 9 years ago when I was in my early 30's with a small preschooler and lots of plans. I'm sure it's a familiar story -- swollen hands and Raynaud's. All my plans were forgotten, and replaced with a new plan: staying alive. My official diagnosis was UCTD for a few years, then CREST, and now my rheumatologist just simply calls it scleroderma without really specifying anything else.

 

My complete blood count (CBC), metabolic profile, erythrocyte sedimentation rate (sed) rate, complements have always been normal. The only thing that's ever been wrong on bloodwork is ANA and SCL 70. My main issues over the years have been thick skin on fingers and toes -- not really obvious to the untrained eye, facial changes (the WORST! -- who IS that in the mirror?), Raynaud's, salt and pepper skin changes. I've had some other odd things come and go, like episodes of really frequent premature ventricular contractions (PVC) and tachycardia. So far (knock on wood) no organ damage has been found. Oh, I also have had osteopenia, and took Reclast infusions to fix that. Once I got used to my new reality, life was pretty normal and stable for several years. Scleroderma was always there in the background, though. It informed (and still informs) every single decision of my life.

This past summer, I began having some health problems. It's very difficult to talk about because of their personal nature. Let me just say -- ladies, be vigilant with your yearly check-ups. When your immune system is busy doing this crazy job it THINKS it's supposed to be doing, other latent issues may pop up. The scleroderma is like a diversion sometimes. So, I had/have problems -- the OBGYN says it's "multi-factorial". The only risk factor I could see at the time was possibly a suppressed immune system. So, I quit taking my meds, including Plaquenil. As I mentioned in the Plaquenil thread, this didn't work out so well for me :) I realize that the Plaquenil is a modifier, rather than a suppressor. However, when certain parts of our bodies are under attack, one can lose their ability to think rationally.

When I tried to discuss my issues with my rheumatologist, I used the euphemism "lady parts" :) He made a joke about it; this was my last appointment. He's kind of an idiot anyways, so this was the last straw. I'm now seeing a new rheumatologist. I'm on double the Plaquenil as before. I'm trying Losartan for the Raynaud's. It does seem to be helping, although not as well as the first few days. I'm about to try a new medication for sicca, but that's probably another thread.

Mentally/emotionally I am a wreck lately. As I said before, I should feel grateful that I'm doing reasonably well, as compared with many. However, the little things really pile up and wear me down. I know that everyone gets styes or eye infections from time to time. Everyone gets painful places from time to time. Everyone's face changes with aging. All ladies get lady issues. It's having finger ulcers, styes, corneal erosions, candida of multiple areas, plus the knowledge that all my issues are chronic and likely to recur over and over again...I just get tired of taking care of myself. Slathering on lotions and ointments and compresses and antibiotics. I'm the type of person who doesn't even like to fix my hair or wear make-up -- very low maintenance -- so all this self-attention is awful. I had maybe cried 2 or 3 times in the past 8 years before things went south. Now, all it takes is a kind attitude and I'm liable to start blubbering. You know that feeling? When you're just right on the edge of crying? I'm not sure whether it's scleroderma-related depression or if it's just situational. I mean --- isn't it reasonable to feel sad when you feel so crummy? When I was little, I always cried at the beginning of an illness. That's how my mom always knew I'd be home from school the next day. It probably doesn't help that peri-menopause seems to have begun. Oh, the humanity!!!!! At least the PMS hot flashes are cozy :)

Yuck, all I've done is talk about my illness! I've been determined not to let sclero define me, but when you're going through a tough spell, that is extremely difficult. I've even told a few people in my social network that I have sclero. Generally speaking, I've tried to keep it -- not exactly secret, but just not mentioned. I told people early on, but I felt like it made them uncomfortable. It's like most people are unsettled by the knowledge that something like this exists and is outside their control. I admit, it's a creepy sounding disease when you describe it to people. Like something created by a mad scientist. However, not telling people makes me feel like I'm hiding something. At this point, I'll talk about it a little bit to people who feel safe. My attitude is changing to "get over it".

Okay. I have probably over-introduced myself. Thanks for the welcome. I look forward to visiting here if you'll still have me after this neurotic rant.

Kitty



#2 Shelley Ensz

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Posted 22 March 2013 - 12:17 PM

Hi Kitty,

 

I'm sorry for all that you have been through and are going through.

 

Most of us go through phases where we'd like to rebel against illness and all of the demands it makes. Yes, it's perfectly normal to feel sad when crummy things happen, and scleroderma can be crummy all the way around.  So don't feel bad if you are just going through a passing phase, especially one involved in coming to terms with illness and the demands it can make.  Consider it a wake up call, and an alarm going off saying that this is the time to make adjustments.

 

The guideline they give us is that if we feel depressed (or despairing, or whatever) for over two weeks, then we should talk to our doctor about it.They might recommend counseling and/or medications. It's not necessary to figure out whether its depression caused by scleroderma or if it is situational depression; it is what it is, and just trying to mentally sort that out might be dragging your spirits down.

 

Most of us seem to find a lift in our spirits from joining this group, and providing outreach to others. Part of that might be because it makes our scleroderma experience useful for a change, instead of what often seems like both a physical and social handicap. If you want others to relate to your illness quicker or easier, you can tell them that you have a "severe type of arthritis" and that you try to live as healthfully as you can to try to minimize its impact on your lifestyle.

 

It sounds a bit to me like you are grappling with the issue of its effect on your self-image and self-esteem. I think we all go through that, but some of us are more keenly aware of the process than others. Our images of ourselves as healthy people with strong, positive attitudes directly conflict with our experience of illness, despite all the healthy measures we have taken.  We have worked hard for our health, we have done everything (well, almost!) they recommend to live a long, healthy life, so how on earth did we get wrongfully tossed into the scleroderma box? Isn't that supposed to be only for people with bad attitudes, who have made some sort of massive health mistakes?

 

No. It is not. Scleroderma is a bad thing that can happen to extremely positive, self-assured, mentally stable, and very health-conscious people. Many of us believed, with all our heart and soul, that healthy food and good exercise would keep us fit as a fiddle into our ripe old age.  Many of us were wrong about that.  It is a great recipe, which works for most people, but not for everyone. If you're still trying to be Superwoman, maybe it's time to remember that Superman died of a bed sore, despite a more positive attitude than any of us could probably ever muster.

 

In other words, it takes a certain amount of humility, and willingness to adjust our own perspective of ourselves, to leap over the dent that illness can put in our self-image and self-esteem. But, you can do it, and you ARE doing it by becoming a valued member, who will surely reach out with heartfelt caring to others, on Sclero Forums.

 

:emoticons-group-hug:


Warm Hugs,

Shelley Ensz
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Hotline and Donations: 1-800-564-7099

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

#3 Joelf

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Posted 22 March 2013 - 02:49 PM

Hi Kitty,

 

I'm so sorry to hear that you've been feeling rotten and unwell and I can understand how upset and out of control you feel. I think the worse thing is the "out of control" situation; that's what I personally found the hardest thing to cope with. As Shelley said, we like to feel that we're strong, healthy and fit, which I certainly was before I developed Scleroderma. I can remember in the beginning whilst I was waiting to see a lung consultant, feeling very worried and unhappy and at one point even bursting into tears during one appointment with my general practitioner (most unlike me as normally I do have a "Polyanna" attitude and I really don't do depression!)

 

As far as explaining the disease to friends, I'm afraid I totally bored everyone I knew completely witless by explaining in minute detail every single feature of the blood tests, lung tests and treatment I received. At first my friends were intrigued and interested but very soon became bored by all the tedious detail and as I had no wish to commit social suicide and be shunned by all and sundry I realised that enough was probably enough and that although I found photos of my speckled antinuclear antibodies totally absorbing and fascinating, the rest of my friends/family/acquaintances etc. were bored to tears hearing about them!! :rolleyes:  Nowadays, should anyone rashly enquire how I'm feeling, I simply say "Bearing up!" or words to that effect. I have been diagnosed for nearly four years now, so the novelty has worn off! ;)

 

One of the very best things to come out of having Scleroderma has been joining ISN and meeting some really fantastic people, some of whom have become good friends whom I would never have met, had I not developed this bizarre disease.  I do hope, Kitty, that now that you've found these forums and joined our community you will also thoroughly enjoy being part of it and will start feeling happier and improving very soon.

 

Kind regards,


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#4 Nene

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Posted 23 March 2013 - 01:42 PM

Hi Kitty

 

After years of stability my scleroderma went into a more active phase last summer and I can empathise with how you are feeling.

 

A wise lady once told me that there is no shame in grieving for the life we thought we were going to have and I know I have had what I call 'well person envy' on more than one  occasion. On the whole though I know that the good things about my life far outweigh the bad and despite my fears when first diagnosed I am still here   :D

 

Hope things improve for you really soon.



#5 judyt

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Posted 23 March 2013 - 02:39 PM

Hi Kitty,

 

Welcome to you and your woes!   This is the right place to unload them and to get comfort and support.   

 

'Well person envy' that I do understand.   Just show me a very elderly lady with a back pack on scurrying through town to do her messages and if envy could kill she would be no more.  Why can't I be like that when I am not even old yet.

 

However I do have a great life really and just between us all I don't mind not being able to manage the supermarket shopping every week.   My ever patient husband actually likes shopping and I am really good at waiting at home to see what he comes back with.  A few wierd things sometimes and the absolutely wrong thing sometimes but on the whole it is quite an adventure unpacking the bags and finding what he has bought.

 

'Get over it' is not a bad mantra at times as long as you remember to cut yourself some slack when things get really tough.   I have had what has probably been the worst year of all since February 2012 and I feel now as though I am almost out of it but I will never be quite the same again but hey! I am OK.  That is what matters.

 

Take care, rant to us when you need to.

Best wishes

Judyt



#6 Shelley Ensz

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Posted 25 March 2013 - 05:22 PM

Hi All,

 

This "Well Person Envy", why that's a hole we could all so easily drop into and never come out of, isn't it?

 

Not only that, but it is also possible to experience "Sick Person Envy". Sometimes folks can manage to be sick in ways that can make us envious.  For example, they have neatly managed to acquire an ailment that is quickly diagnosed, readily treated, easily spelled and pronounced, well known, achieves instant sympathy and understanding from others... why, the list goes on and on.

 

I think we can even get to envying how good we had it before we got sick, when we were younger, or before other bad things crept into our lives. It is simply too easy to compare ourselves to others, or even to our younger self, and come up on the short end of the stick.

 

Speaking of which, my husband always tells people that I'm "only short on one end".  Then they look me over from head to toe, trying to figure out which end it is. :emoticon-dont-know:

 

It's not always easy to let go of our comparisons, because it is so human to analyze and compare everything. But oh how sweet it is, during those moments when we can say, I'm glad I am who I am today, I wouldn't trade places with anyone else, even if I could.

 

I can say that I am glad, not for being sick, but for all the very special people and many new friends that I have encountered along the way, and especially those who take the time to consider issues, such as Well Person Envy and even Sick Person Envy.  It is in considering and talking about such types of things that help make us better people, people who are more understanding of ourselves, and of each other.

 

: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.

#7 KayTee

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Posted 25 March 2013 - 05:29 PM

Hi Kitty:

 

Thanks for ranting - really. It does help and there are so few people who can understand what the constant, chronic issues of this disease are. And this is a wonderful place for all the information and support.

 

I don't know where I got this quote - it may even have been this site - but I keep this on my desk top and open it on those days (frequent) I need it:

 

"We forget that we have lost our lives, we may still be alive but we have lost the lives that we were living prior to scleroderma, that's going to have an impact on us somewhere along the line. Let me stress that it is possible to have even better lives after scleroderma, I insist on having one!"

 

Apologies if this was someone's quote but let me know if you're the author.

 

Good luck Kitty. We all learn from each other.

 

Hugs


Kay Tee

#8 Shelley Ensz

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Posted 25 March 2013 - 08:24 PM

Hi Kay Tee,

 

The quote you love, "We forget that we have lost our lives, we may still be alive but we have lost the lives that we were living prior to scleroderma, that's going to have an impact on us somewhere along the line. Let me stress that it is possible to have an even better lives after scleroderma, I insist on having one!" is from Amanda Thorpe's message on Sclero Forums dated 11/21/11.

 

Amanda, take a bow, please!

 

: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.

#9 KayTee

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Posted 26 March 2013 - 02:03 PM

Thank you!! And thank you very much Amanda. This Quote sustains me.


Kay Tee

#10 Amanda Thorpe

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Posted 30 March 2013 - 08:31 AM

Thanks Shelley I didn't remember that this was my quote!

 

Kaytee you are most welcome, as already said using our scleroderma experiences to help others is a major bonus...to us! :yes:

Finding this site, everyone on it, the medical information that's actually accurate and current, the personal stories (they drew me in), live chat, opportunities to volunteer, videos, well it's been life changing. I am so very thankful to all of you.

 

Take care.


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#11 miocean

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Posted 30 March 2013 - 08:11 PM

Shelley, I am going to challenge you on this one! Amanda's famous quote pre-dates 2011.

In a June 2010 post I wrote "While I was on dialysis I would read Amanda's posts about how there is life after scleroderma..."

I was on dialysis from 2004 to 2010 and remember Amanda saying something like "There is life after scleroderma. It might not be the life you expected..."
Like Kaytee this sustained me more times than I can say and helps me get through my days.

I did advanced searches on the forum using different criteria under both Amanda and myself and the furthest back I can find is my 2010 post. Amanda must have written it before that so the challenge is on to find the original post!

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#12 Shelley Ensz

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Posted 03 April 2013 - 05:56 PM

Hi Miocean,

 

So you're saying Amanda was just quoting herself in 2011? :emoticon-dont-know:


I'm sure you'll find a lot more inspiring gems from her if you dig back in the archives.  And maybe you'll even track down the original post.


I promise to do a Sclero Happy Dance for the Winner of the Amanda Quote Contest (AQC, as we call it.)

 

: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.

#13 horsemum2

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Posted 04 April 2013 - 04:35 AM

Hi Kitty,
I'm quite new here too. Your story is so very close to my own that we could be twins! I truly understand as many others here will too. I haven't posted an introduction for myself here yet because the ulcers on my fingers make typing even this much very painful. Hopefully one day soon, I can get back here for a chat and a longer post to meet some of these wonderful people.

#14 Shelley Ensz

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Posted 04 April 2013 - 11:14 AM

Hi HorseMum,

 

Welcome to Sclero Forums!  I'm sorry you have finger ulcers, and I sure do hope that they settle down enough for you to make an introduction.

 

You might find it better or less painful to forgo using your fingers altogether, and type with just a loosely held pencil, affixed with a rubber grip, in each hand.  Miniature keyboards (that you can use with just one hand) and voice activation software is also a possibility for those of us who have enough patience and endurance to train the software to understand us.  But refraining from painful and/or unnecessary tasks is far more important than stretching the envelope, because we want those ulcers to heal as promptly 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.

#15 Joelf

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Posted 04 April 2013 - 12:02 PM

Hi Horsemum,

 

Welcome to these forums!

 

We've already met in the chat room and it's lovely to read your post as well, albeit that it's so difficult for you to post, given your very painful ulcers. We have a love of all things equine in common!! ;)

 

I've included a link to our medical page on Treatments for Digital Ulcers which I hope you'll find helpful and I do hope that the ulcers improve for you and enable you to post and join us again in the chat room.

 

Kind regards,


Jo Frowde
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#16 Joelf

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Posted 04 April 2013 - 01:00 PM

Hi Miocean and Shelley,

Shelley, I am going to challenge you on this one! Amanda's famous quote pre-dates 2011.

In a June 2010 post I wrote "While I was on dialysis I would read Amanda's posts about how there is life after scleroderma..."

I was on dialysis from 2004 to 2010 and remember Amanda saying something like "There is life after scleroderma. It might not be the life you expected..."
Like Kaytee this sustained me more times than I can say and helps me get through my days.

I did advanced searches on the forum using different criteria under both Amanda and myself and the furthest back I can find is my 2010 post. Amanda must have written it before that so the challenge is on to find the original post!

miocean

 

Hi Miocean,

 

So you're saying Amanda was just quoting herself in 2011? :emoticon-dont-know:

I'm sure you'll find a lot more inspiring gems from her if you dig back in the archives.  And maybe you'll even track down the original post.

I promise to do a Sclero Happy Dance for the Winner of the Amanda Quote Contest (AQC, as we call it.)

 

:emoticons-group-hug:

 

 

 

 

Ah-ha, I've found a quote from Amanda dated 23rd September 2009

 

 

What is worth bearing in mind is that there's still good life to be had after scleroderma it's just that life looks different from what we thought it would but that's not always a bad thing. My life is completely different from what it was but I still have a great life. We have information on this site regarding emotional adjustment that you might find helpful. Whatever the change to our lives may be we need to adjust to it and that takes time.

 

Maybe I'll be the winner of the AQC!! ;) :lol:


Jo Frowde
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#17 Amanda Thorpe

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Posted 04 April 2013 - 02:51 PM

Hello Horsemum

 

Welcome to the forums! My sympathies with the ulcers, I have them on my feet but they're no less annoying or painful, mind you they don't interfere with typing, that would be weird!

 

Take care and keep posting.


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#18 Amanda Thorpe

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Posted 04 April 2013 - 03:06 PM

Hello Ladies

 

The quotes! Where'd they come from?!

 

Seriously, I think they're all still accurate and true even though things have become more difficult year on year.

 

I still think my life is a good one with things to enjoy, last year that may have been a shopping trip and this year it may be lying in bed listening to a favourite radio programme because I can't get out of bed. I have had to adjust my horizons to enable myself to get as much pleasure out of being stuck in bed listening to the radio as I did from shopping but the alternative...

 

Frustration, disappointment, gloom and doom...well maybe not that bad but who doesn't like a bit of drama! Anyways, after feeling all those things I moved on and made the adjustment to my horizons so I can now enjoy things differently, the radio programme that's replaced the shopping trip for example.

 

Maybe I am easily pleased but I just don't see a choice!

 

Take care.


Amanda Thorpe
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#19 Shelley Ensz

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Posted 04 April 2013 - 07:32 PM

Announcing announcing announcing -- the WINNER of the Amanda Quota Contest (AQC) is none other than:

 

Jo Frowde!

 

And for that, I will do my promised Sclero Happy Dance! 

 

:emoticons-line-dance: :terrific: :emoticons-line-dance: :jump-for-joy: :happy-dance:


Warm Hugs,

Shelley Ensz
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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.

#20 judyt

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Posted 04 April 2013 - 08:45 PM

You are just too clever Jo Frowde!!   Whenever I try to look back for something, ANYTHING! I just end up going around in ever decreasing circles,

 

Congratulations to you, and thank you for being there for all of us.

 

Judyt