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In Pain, Feeling Confused and Alone


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#1 JaneLesley

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Posted 02 May 2014 - 01:12 AM

Hi, my name is Jane. I was diagnosed with CREST in 2010, although have had major symptoms since 2000.   Last year I was diagnosed with Pulmonary Fibrosis, Pulmonary Hypertension and Diabetes.  Metformin and Mycophenolate caused sickness and extreme fatigue / depression and I spent nearly all of last year in bed or on my sofa feeling dreadful.  Almost all medication causes gallbladder, liver and / or spleen infections and I have stopped taking all.  My hands are like very fat sausages, skin thickening, not fluid.  I have been told there is no joint issues, JUST skin thickening.  I have extreme Raynauds, some deep pitting at the moment but thankfully no ulcers.  Also Hyperkerotosis which also causes pain.  My right hand is curled badly, my index and middle fingers do not bend.  I have pain in my hands and feet all the time.  Cutting food causes ulcers on my knuckles.   My left hip is very very stiff, I cannot bend forward, have trouble walking, my left leg regularly just gives out.  My oxygen exchange dropped from 89% to 60% in just three years, steps/stairs and slopes make me very breathless and at times near the point of collapse.   I also have IBS, a Hiatus Hernia, Sjorgrens Syndrome and Telangectasia.    I have days when I cannot shower, cannot hold a hairdryer, house work is all but impossible, as is ironing.  My house is a mess and I hate it.   I cannot touch type any more and have not been to work for 15 months – fatigue, inability to type, or get up the stairs to my desk and problems with the one hour drive to work all added to my inability to get there. 

 

 

My Rheumatic Consultant, Heart and Lung Consultants are all based in Bath (a 3 hour drive), so visits are limited.  They are all very good and all tell me my problems are MILD.  Funny thing is they don’t feel mild when all put together.  Last August it was suggested I attend a Pain Management Clinic at my main hospital (one hour drive).  It took until December to be accepted and two weeks ago before my first appointment.  After two sessions of acupuncture I was in unbelievable pain and have had to stop.  Yesterday I attended a Pain Management Physio session.  I had a 30 minute instruction on how pain is caused, pain receptors etc and was then told the best thing to do would be to go for long walks or go out dancing with friends.  (Where does a 52 year old breathless diabetic with walking stick and two wrist braces go clubbing??).  Another suggestion was to stop focussing on my pain and read a book!! 

 

 

I am so grateful that my Husband is very supportive, especially when confronted with health experts who do not seem to listen to my concerns and problems.  I am awaiting a sleep test, I wake up gasping for breath and am also have a future appointment to see a Diabetic Consultant as I cannot tolerate any diabetic meds.    I feel very alone and, as in the case yesterday, made to feel that I am somehow doing all these things to myself.  Is there anyone out there who understands? 

 

 

Jane

 



#2 Shelley Ensz

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Posted 02 May 2014 - 06:43 AM

Hi Jane,

 

Welcome to Sclero Forums!  Fortunately you've now found a whole world of people who do understand -- to either a greater or lesser degree.

 

I daresay one of the hardest things for me to let go of when I first became sick was the idea that somebody should "understand".  It is such a big word, it encompasses so much, that I made myself unnecessarily miserable thinking someone else should understand what it was like to walk in my shoes.  But of course, nobody ever could really understand, not unless they were me, experiencing everything exactly as I do, and processing it with the same perspective and attitudes, too.

 

So then I just looked for mere sympathy, but I also found that was in very short supply, as well.  Everyone is always so wrapped up in their own bubble gum, you know?  Yes, I know you know, as you have obviously hit that brick wall, as well.

 

Finally I just gave up entirely and threw my very own World's First Virtual Pity Party!  Yes, I know, you're wondering, how can I make fun of a thing like this?  But I simply had to, you see. It was the only thing that made it manageable for me.  Like many others around here, I intentionally adopted humor and laughter as a coping method for dealing with illness, and life in general, and it still serves me well, to this day.

 

That's not to be heartless and say you should just laugh about your dire situation.  But honest to pete, they thought you should go dancing?!

 

And it's just dandy that your doctors think your case is MILD.  Unfortunately, our doctors yardsticks are usually totally broken.  They see us walking, or hobbling, or rolling, into the room and they think, aha, another one I haven't entirely killed off yet, two thumbs up for me!  I'll give her a little pep talk about how great she's doing, it will just make her day, I'm sure!  Not dead yet, eh, something to celebrate don't you think?

 

The mere fact that we are still breathing means an awful lot to them. That is the bottom line goal, for us to not be dead. You are not dead yet, therefore you are doing great and your case is MILD!  Isn't that wonderful?

 

Why it's so good, we would throw a party, if any of us actually believed it.  I'm sorry to say, Jane, but you are indeed sick. And although I have no medical training at all, it sounds like you are not only sick but at present your quality of life is pretty trashed, too.

 

Since we can't directly help on the health front, the only avenue left for us is to look at the quality of life issues. Although it sounds extremely dull-witted and may not be helpful at all, see if you might be able to tweak some attitudes. Most of us take our own illnesses too seriously. They are serious and even life-threatening things to deal with, so it's only natural that we fall into that pit. Who wouldn't? But the problem is, its the pits. Lightening up can be both the hardest and the easiest and the best thing we can ever do for helping ourselves cope with serious illness.

 

See, did you notice in the last paragraph, even the label, serious illness, gets us to thinking we must take everything seriously!  But we don't have to. It's a choice and one of the only choices we have left, after we're already unavoidably ill, is to tweak our attitudes about it until we can more happily live with ourselves, and others.

 

I'm sure everyone else will have better input to render than mine.  I must say, I got up too early this morning and I'm not quite on my game.  So forgive me if I hit the wrong note with this, okay? 

 

And take it with a grain of salt, but I will feel *really bad* if you don't come visit my Pity Party, you hear? All these years later, it's still going strong!

 

Anyway, we do understand. Sort of.  At least, the best we can.  And we care.

 

: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.

#3 Joelf

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Posted 02 May 2014 - 07:31 AM

Hi Jane,

 

How lovely to hear from you again. :)

 

Well, there you are......the next time you visit those sensitive and helpful souls at the pain management clinic, you can tell them that you took their advice and you did go to a party (albeit a virtual one!!)

 

Joking apart, I understand how frustrating it is to be treated as if you're making an unnecessary fuss and even if your symptoms were "mild"? they're still bad enough to reduce your quality of life, which is the most important thing. Thankfully at ISN we do understand how you're feeling and can empathise with the pain and distress you're experiencing. Sadly many health "experts" do not realise how debilitating Scleroderma can be, especially as we sufferers tend to look quite well and not like the wan, pale and interesting patients they often deal with. Shelley's advice is so apt and I soon found that (after boring all my friends witless with minute details of my symptoms and treatment) no one wants to talk to a whining misery, so I decided that if I didn't want to commit social suicide and be treated like a leper, I simply would have to be cheerful and get on with it to a large extent! (The happy idiot, that's me! ;))

 

Now that you've renewed your acquaintance with our forums, please don't be a stranger as you do know that you can always be sure of an understanding ear here and I've included a link to our medical page on Emotional Adjustment and Scleroderma, which includes one of Amanda's super videos.

 

Now let's get on with the party.....where's my gin and tonic? ;)

 

:emoticons-group-hug:

 

Kind regards,


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#4 JaneLesley

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Posted 02 May 2014 - 08:22 AM

Thank you both so very much for your support.  I have already popped into the Pity Party and had a good laugh - thank you.  My Cousin, who is currently suffering from extreme problems with a different autoimmune disease has suggested that there is probably a gap in the market and we should set up our own 'autoimmune disco' - with lots of gym crash mats to catch us when we fall, plus a couple of strong good looking bouncers to pick us up again.  We would need to hold it early in the evening, so we can all get to bed nice and early!!!   Might even start crocheting nice warm disco gloves - oh the ideas are endless. 



#5 judyt

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Posted 02 May 2014 - 12:41 PM

Hi Jane,

 

It's ME who has the mild symptoms, you can't have them, they are MINE!   You can continue dealing with your symptoms which in my book are far from mild and make me thankful that I can claim my special status here.

 

I can take heaps of medication each and every day which keeps me stable and I can keep my hospital stays down to one  every few years.   I have no skin involvement and my Raynaud's has retired defeated, I can do anything I want to with my hands and still I keep moaning on about fatigue, which from the way I look when out in public, must be all in my head.   I am a real woos when it comes to stairs, I just can't get up them without feeling I am going to faint.   So much fuss in fact that my poor long suffering husband finally gave in and we sold our beautiful home on a hill and moved to a one level house.   He has to be the sole breadwinner and on top of that pay for household help to keep up with the things he hasn't time to do.

 

Why I refuse to go on long walks and catch buses and trains when we are in the city, is another puzzle some people find hard to solve.   My goodness, over Easter when we were away for a few days with the car club we belong to, I had to be pushed around a Museum we were visiting in a WHEELCHAIR for heavens sake!!   Actually, just between us all here, I LOVE wheelchairs and wish I could qualify for my very own one permanently but I do know that it wouldn't be 'good' for me to give in to that extent.

 

So Jane, don't you let anybody try to tell you that you haven't got serious mobility issues.   You have every right to grieve for the life you have lost.   Fortunately, you seem to have a husband like mine - one out of a box with a big red ribbon on it.   Some of us are not that lucky I know and I do remember to thank him for the things he takes on in place of me.   I just wish he would learn to cook!!!   He does everything else, why can't he cook??   Actually, I lie! he can cook when he absolutely has to, he does the breakfast and most of lunch so putting together an evening meal is something I really can get some satisfaction out of.

 

Remember, we are here and we certainly do understand, but it is disappointing when the medical people one has to consult take the view that yours seem to have done,   My GP is forever telling me that I have a lot to put up with and no wonder I get tired of it all.   She doesn't know much about Sclero really but she is first rate at the provision of sympathy and understanding.   Now I am getting into a long winded ramble which is easy to do on a sunny Saturday morning, still sitting in bed with my laptop on my knee while the rest of the world bustles around getting on with their Saturday morning chores.

 

Just remember, here you are one of us, welcome at any time and loved and cared for.

 

Best wishes from the upside down side of the world where we are just getting into Autumn and the warm clothes are emerging.

Judyt



#6 Amanda Thorpe

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Posted 03 May 2014 - 02:56 AM

Hello Jane

 

Well welcome to the weird 'n' wacky world of scleroderma! You have already experienced the weird 'n' wackyness of it all, why oh why you were ever referred to seminars about how pain is caused (you already know...scleroderma!) and diversion suggestions (can't walk or boogie as disabled because of...scleroderma!)

 

Pain management is not applicable for everyone with scleroderma simply because physiotherapy, acupuncture, and knowledge either are not enough or just don't work. For many people with scleroderma medication is the only option and if this is you there is no shame in it. Really it's no different from taking something for say reflux or pulmonary hypertension, pain won't kill you (which is why the medical profession usually pay it no mind) but it kills a quality of life!

 

You are now among friends who understand you, your disease and so forth, as others have already shared, your unfortunate experiences with doctors/treatment are all too common. In line with your "mild" diagnosis, a member of this forum was told there are worse diseases than scleroderma. Now this member has had a kidney transplant after 5 years of dialysis, is being assessed for a lung transplant, has a whole host of other symptoms but hey...it could be worse...they could be dead!

 

I spent my first year sat on my couch in my dressing gown wondering where my life had gone, now I have another one, having accepted the "death" of my life before scleroderma enabled me to forge a new life with it.

 

Try to develop a keen sense of irony and allow your humour to grow, grow, grow as you make your way into the weird 'n' wacky world of scleroderma.

 

Take care and keep on posting.


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#7 Amanda Thorpe

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Posted 14 May 2014 - 07:35 AM

Hello Jane

How are you doing and how's your husband?

This disease has its ups and downs, it waxes and wanes. Are you up or down currently? I'm down but that means I will go up...eventually!

Take care.
Amanda Thorpe
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#8 Shelley Ensz

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Posted 15 May 2014 - 11:58 AM

Hi Jane,

 

I got a good laugh about your 'autoimmune disco'.  Thank you for the chuckles!  :emoticons-yes:

 

Oh and we have just the right emoticon for it, too:

 

:emoticons-line-dance: :emoticons-line-dance:


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 Kathy D

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Posted 15 May 2014 - 10:22 PM

Dear JaneL,

 

I can relate to you!  I am so sorry you are suffering.  You definately deserve a pity party :)  Party on!

 

Theoretically my ailments can be dealt with individually, But WOW they make it impossile for me to function normally on a daily basis.  They affect me in groups of any combination at all times.  Most days its hard to get by so I had to reset and adjust my expectations according to my abilities many times.  I think you aswered some of my posts years ago and I am grateful for your input.  Maybe I can reciprocate.

 

Its almost impossible to for me to pick up & put away stuff, much less clean, and especially bathe.  So I exist with dirty unstyled hair in an unkept home most of the time.  Like you I spent 2 years in bed.  My priorities have been reduced from being an attractive income earner and great cook with a nice clean home to only eeking out washed work clothes for my husband and clean coffee mugs for myself..............................Though I still feel better when I achieve my lowered expectations :) 
How can you lower your expectations and demands on yourself?

 

Now in my scleroderma life, If I can get the house picked up and put away in order to dust, sweep, mop the next day when I am physically able to, its cluttered again.  Or, If I get it picked up and swept and dusted I need to sleep and rest in bed for 2 days straight before mopping. By that time the whole cycle needs begin again.  I never get ahead.  I understand your pity party post!  You are not alone :)

 

Fatigue and IBS prevent me from leaving my house so much of the time that I rarely leave. The days I attempt to get on with life I am met with:   IF I  shower/dress/makeup/style hair I am wiped out for the day and too fatigued to drive safely, thus I dont leave.  IF I shower the night before, the next day IBS delays me and fatigue takes over thus I dont leave, then multiply the symptoms you listed for new scenarious and its all the same result.  I do my best to accept it though accepting all this is a daily struggle too even after the last years, this "dis"ability still frustrates me daily.  I know this frustration doesn't help so I do the best I can to accept it.  I hope you can work on accepting it too though its hard.

 

I also suffer with depression and raynauds too.  I Know I need sunlight to aid my depression but I live in such a cold area its difficult for me to get outside for more than a few minutes without my hands and feet turning purple/dead looking and aching.  I bought an artificial sunlight lamp on the internet that helps somewhat if that interests you.

 

 

BTW, I had gorgeous styled hair most my life but it became too hard to use blow dryer and hold hands above my head, I understand!  I really struggled and still do with losing my own identity as an attractive woman.  Hang in there, those who love you wont see that your hair is not fixed.

 

KD


Diffuse Scleroderma Diagnosed March 2009

#10 Amanda Thorpe

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Posted 16 May 2014 - 11:42 AM

Hello All

 

Excellent points made by Kathy!

 

I call it adjusting your horizons, as soon as you accept your inability to do as before you can accept your ability as it is now, however reduced.

 

I am an infrequent bather and hair washer although having my hair short and investing in the light weight version of the professional hair dryer my hairdresser uses has made drying my hair so much easier, nevertheless, it's not so much rinse and repeat and rest and repeat!

 

It is most definitely whatever works for you is what works. Our lives may be a lesser version of what they were but we don't have to be lesser people. Less is more for sure!

 

 

Take care.


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#11 Shelley Ensz

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Posted 19 May 2014 - 01:04 PM

Hi Kathy and Amanda,

 

You raise some very interesting points.  I can't emphasize how much I agree about the importance of lowering our expectations and simplifying our life and activities.

 

To ease the brunt of cleaning, one habit that I've picked up on is to always "close the loop".  Illness and fatigue can make it simply too hard to go back later to clean or fix anything.  It's like it takes even more energy, you know, and also in the time gap I can sit there thinking about what needs to be done, how I have to go about it, and wear out what few shreds are left of my energy just by that.

 

I started simple, with tiny little daily habits.  First I started making the next pot of coffee while the pot was brewing, and I would have it ready to go before I poured a cup.  I settled on only two times a week that I would wash clothes, otherwise it seemed like it was a load or two every day; then I realized we could simply re-use a lot of clothing and towels and be none the worse for it.  And I put up hooks for towels so they only needed to be hung and never folded.

 

For the beauty queens among us, I've had a few breakthroughs. One was telling my hairdresser that I was going to do absolutely no styling at all.  No dryer, no curling irons, no messing around with a lot of products.  It forced them to cut my hair in a curl-and-let-frizz style that is acceptable enough. Also with curly hair and no fixing, I find that I only need to shampoo once a week and the rest of the time I can just rinse it and voila, its all curly again.  Yes, I know curly is OUT, so I think of it as my very own style trend.  We simply have to use our brains and our attitudes in our favor.

 

My other beauty breakthrough was realizing that I didn't have to stand up to put my make-up on.  Okay maybe this is obvious to everyone else, but it wasn't to me, and it was a huge deal as I am very prone to orthostatic intolerance, which is getting dizzy when I stand up or when I stand up too long. 

 

Also, carefully define what the bare minimum is for makeup for you (if any at all).  For me, it is eyebrows, since I hardly have any.  So even if its a stay-at-home day, unless its a total in-bed day, I'll do my eyebrows, which is good enough for a few errands or a friend dropping by.

 

The point is, we can forget some standards, change some standards, and when we've gone too far in one direction (as we are prone to do after a year or two bedridden), we can also tick our standards up a notch from time to time.  But instead of going full-on makeup or not, or full-on cleaning or not, I've found little tweaks and some "good enough" standards to give me a mental lift without wearing me out physically.

 

: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.

#12 Kathy D

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Posted 19 May 2014 - 08:23 PM

I could not think of more hopeful and inspiring phrases as "adjusting horizons" and "simplify".  I do believe this is my new motto/mantra!!

 

Jane are you okay?  Please let me know.


Diffuse Scleroderma Diagnosed March 2009

#13 Amanda Thorpe

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Posted 21 May 2014 - 11:40 AM

Let's start a sclero revolution! Here you have permission to simplify, adjust your horizons and manage your "dis"ability however you like!

Washed or unwashed, coiffured or au naturel...home spic and span or totally down the pan, you are beautiful and capable and so welcome here.
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#14 Joelf

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Posted 21 May 2014 - 12:00 PM

............Washed or unwashed, coiffured or au naturel...home spic and span or totally down the pan, you are beautiful and capable and so welcome here.

 

 

Indeed you are, folks! :)

 

Oh no, Shelley; is curly hair out? :o That's thwarted me then; damp weather and my hair goes into ringlets, like a middle-aged Shirley Temple.  :blink:  :unsure:  I hate to admit it, but I only comb it very infrequently and never brush it; I'm cultivating the dragged-through-a-bush-backwards look!   ;)  :lol:


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#15 Amanda Thorpe

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Posted 21 May 2014 - 12:53 PM

Let me clarify...curly is IN. How do I know?

I have it! Well but for my straighteners which I often ditch in favour of the diffuser to deliberately enhance my natural cur...it's easier than styling it straight.

Liberate your natural curl and frizz!
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#16 judyt

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Posted 21 May 2014 - 03:37 PM

Curls are definitely IN as far as I am concerned.   Short hair too.   I have finally persuaded my hair stylist that I need to see her every 3 weeks.   My hair grows fast and so I need to keep it under control with a regular trim, then it is never too short or too long.   I can still drive myself anywhere I want to go and there is a disabled carpark right near her salon so I am on the pig's back as it were for convenience.

 

When it gets trimmed I get the full works with flash blowwave but every other day it is simply a dunk under the shower and a ruffle up with my fingers and let it dry.

 

I have never had natural curls before, and I think it must be a hormonal thing!!  as I get older my locks are getting curlier and easier to manage, thank goodness.

 

The rest of me gets similar treatment.  No make up except for a little lipstick and a smudge of eyeshadow and I am ready to go out.   I do like to wear flattering clothes in colours which suit me so I do put some effort in  to get things which are comfortable and easy to get on and off.   I know I am much more mobile than a lot of you other girls but I am still plagued by overwhelming fatigue and the ever present incontinence but a good day will always come again soon and I will make the most of it.

 

Have just been away on a holiday in Fiji which sounds incredibly exotic to you ladies but is not so exotic if you live down here.   Wheelchair assistance at the airport is vital and plenty of reading material to occupy me while I sit in the shade and watch everybody else swimming and snorkelling.   It was so lovely to simply stroll into the dining room at meal time and not to have to think about what we were going to have.   We took the whole family with us and the grandies had a marvellous time in the pool and on the beach.   Easy to be the Grandma when all the entertainment is provided.   Took my swimming things but there was no way I could get in and out of the pool safely and the soft sand on the beach was beyond me so I just had to watch.

 

It is quite an interesting exercise to start to think about what we CAN do in spite of Sclero.   Just as long as we don't resent missing out on some things.

 

Best wishes to you all.

Judyt



#17 Sweet

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Posted 27 May 2014 - 08:57 AM

As always, late and frazzled, but welcome to the sclero family!  Great place to be for accurate information, encouragement and support from people that truly get it.  :emoticon-hug:


Warm and gentle hugs,

Pamela
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