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So Many Questions!


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#1 wendyl

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Posted 02 July 2010 - 12:06 PM

Hi All,

I am new to this forum. I happened upon it and am very happy that I did!

I was recently diagnosed and figure I have had symptoms for about 4 years but no one had put the pieces together. Recently, I have been having almost continuous Raynaud's, though the weather is warm, so I am obviously worried about my extremities. So far my internal organs seem to be okay (heart and lungs) though I have GERD and GI problems. MY specialist has said I could easily continue in this condition for some time (or, I could deteriorate in a year; no way to tell). It is, frankly, hard to live with so many question marks. Do you all find it the same?

I guess I have a couple of questions to throw out:

1. How have you been diagnosed with either limited/CREST or diffuse/systemic? Has this only been with the symptoms as they have presented? (Is it just wait and see? I am seeing a specialist and this is what I am being told, but it is really hard to believe that, in 2010, there is no way to diagnose more specifically or predict!)

2. Are any of you women single and dating? I am 56 and reasonably attractive (so far) and hope to not spend the rest of my life alone. I fear that no one will want anything to do with me with this disease! It would be hard enough to wrap my head around if I had someone's support, but I am quite alone in the world. Thoughts?

It is wonderful to be able to even ASK. No one has any idea what this disease IS, let alone what a terrifying place it is to be when presented with the news.

Thanks to all of you out there. I don't even know you, but it helps to be able to write and ask!

Through tears, but with a smile!

Wendy

#2 Shelley Ensz

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Posted 02 July 2010 - 01:20 PM

Hi Wendy,

Welcome to Sclero Forums. Since you have already been ill for four years, you are past the critical time period which as I understand (although keep in mind I'm not a doctor, I have no medical training at all) is the first three years. Thus you are fairly likely to continue to have fairly mild disease. Developing a keen ability to be flexible and adapt to whatever life throws your way will serve you in good stead, regardless of what does or does not happen.

I think it is possible for anyone to have close relationships, regardless of our situations. People have gotten married while on life support or on death row, and likewise remained lonely or gotten divorced when they were fabulously young, healthy, beautiful and rich.

So as I figure it, we are no more, or less, likely to find companionship now than before we became ill. But if the whole point of us becoming involved in a relationship is to seek support for ourselves, it is doomed to failure. The question is, what in return are we also going to bring to the table...charm, enthusiasm, laughter and caring for the other person regardless of what they are facing, as well? If we approach it as a matter of friendship and a two-way street, then we will certainly find support nearly everywhere we go, in both close and casual relationships. :rolleyes:
Warm Hugs,

Shelley Ensz
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#3 judyt

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Posted 02 July 2010 - 02:30 PM

Hello Wendy,
I can well relate to your situation, I had symptoms of CREST for many years, Raynauds, GERD, other GI disorders but nobody put them together until 2003 when I was 59. Like so many of us I read what I could find on the net and frightened myself to death!!! however since then I have found that my disease has not changed my life that much. Every time I get some sort of a crisis I go into panic mode but it usually turns out to be something age related rather than a Sclero development.

Some of the things which are related to any autoimmune disorder are fatigue and pain and I have been lucky to not have had pain but I usually describe my fatigue as overwhelming. Particularly as I get older I find that I tire more easily than my friends and family but I do my best to cope in my own way. I still do as much as I can, I don't limit my enjoyment of activities with my friends but I do have to go to bed earlier than most of them and none of my friends are the sort who want to go on long hikes or dancing all night!! Funny that!!!! We sew, go to the theatre, talk talk talk, and generally enjoy each other's company.

I had the good fortune?? to have high blood pressure quite early (earlier than would have been expected in fact) and I call that good fortune because I have been able to receive good treatment of my Raynauds with meds which also lower blood pressure. The first thing which alerted a new general practitioner in winter 2003 was blue fingers, and I know I was starting with digital ulcers. I am now at a stage where I don't get any Raynauds (or haven't for at least 8 months and it is winter here now).

My advice to somebody like you is to concentrate on building friendships with women you enjoy being with and with whom you can enjoy mutual support. You might think from this rambling that I am on my own too but that is definitely not the case, my husband is a dear man, but if I was in your position I would certainly not contemplate trying to find another one.
In my group of about 20 close women friends there are a number of widows and singletons and none of them are interested in another man at this stage of life.

In fact, as I write this I can't help thinking that if you forget about finding a partner, one is just as likely to pop up. In this part of the world we call it "Murphy's Law". The idea that whatever you least want to happen is the thing that does.

Try to make sure somebody orders a full range of blood tests for you including DNA and ENA and then find a good Rheumatologist who can help you to control the symptoms you do have, then get on with living.

Best wishes and comforting hugs to you from the bottom of the world.

Judy T

#4 Jeannie McClelland

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Posted 02 July 2010 - 03:18 PM

Hi Wendy,

Welcome to the Forum!

When I asked my rheumatologist about prognosis, his answer was "You'll do as well as you do." :blink:

Now, as much as I hate to admit it, my personality doesn't play nicely with uncertainties. I want to know what it is, what it will do, when it will do it, what I can do about it, and I want to know right now. I thought this was the most ridiculous and evasive answer I had ever heard and went home from getting the diagnosis more angry than scared. Well, close to four years later, I have to admit I was way out of line. He was right. (Doc, if you are reading this, thanks for being patient with me and I'm sorry I was angry. I hope you didn't know.)

Now, relationships. Woooeee. There's a situation just reeking of uncertainties. But Shelley is right. The one thing that would doom a relationship from the beginning is either potential partner thinking what they will get out of it. (I have an ex-daughter-in-law whose first words to me - and at my father's funeral, at that - were "I'm so glad I found someone to take care of me.") It's give and take, better AND worse. One of the best marriages I know of is between two people who are both chronically ill, needing to make many adaptions to their daily living in all respects. The love between them is very evident and the daily kindnesses and care they show each other are inspiring and humbling. The man reads out loud to her to save her eyes! How absolutely loving is that?!

When I asked my hubby why he married me, he said it was because I made him laugh. When he asked the same question, I said it was because he was tall enough to reach the top shelves in the cupboards. Why relationships form and why they last and grow ever better is one of the great mysteries of life. But one thing I am 100% certain of is better no relationship than a bad one.

So again, as Amanda would say, welcome to the weird and wonderful world of scleroderma. It's many things, but boring it is not.

Best wishes,
Jeannie McClelland
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#5 Jeannie McClelland

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Posted 02 July 2010 - 06:56 PM

^_^ Dummy spit: when a child who is on the verge of a tantrum (tanty), either spits or throws his pacifier (dummy, binky, passey, nuk, baby muffler, and others) far, far away. In my experience, the child doing the dummy spit always looks you in the eye to make sure you see the dummy spit coming and therefore gets the maximum amount of audience appreciation. Additional style and form points are awarded for: degree of arch in the back, hands/feet flailing about, how red the face gets, if the dummy lands in the muckiest spot available, and last, but not least, maximum points are awarded to the child who can keep one eye open during a total meltdown to see if an approaching bribe is acceptable.

My infant grandson got a silver medal for spitting the dummy in the direction of the family's big black Labrador dog who promptly picked it up with the right end in the mouth and made off with it. I think they have a good chance for gold in the Doubles Dummy Spit in the next baby Olympics.
Jeannie McClelland
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#6 Sandy B

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Posted 02 July 2010 - 09:20 PM

Hi,

The funniest dummy spit I ever saw was at a zoo, said dummy had landed in a bird enclosure and not to be out done, said bird picked the dummy up and promptly strutted round its cage, proud as punch, with dummy in beak, very funny!!!!

As to relationships with this illness, I am single and 52 and have been fortunate to meet a lovely man 6 years my junior, who lives about 150 miles away, so despite illness, distance and age gap, after two years I can definitely say relationships can happen and flourish, so don't think systemic sclerosis means you are doomed to be alone forever and as Judyt says forging strong friendships with women is equally as important.

You will have good days and bad days, but you learn to adapt, but the most useful tool of all is to try and have a positive attitude. I know it doesn't seem possible, but we have probably all been where you are now, fear of what the future holds, but honestly honey, nobody knows what the future really holds, sclerosis or not. You can find contentment and happiness within this disease, may be not always on a daily basis, but you still have to live your life and finding things that help you forget this disease is important: hobbies, friendships, work. My own particular panacea is painting, I can lose hours and sometimes a whole day to it when scleroderma just doesn't exist at all, bliss, actually nothing else does either!!!

You take care and seize the day,

Sandy B

#7 Amanda Thorpe

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Posted 06 July 2010 - 05:46 AM

Hello Wendy

Welcome to the forums and sorry it's a late welcome.

I was diagnosed with diffuse sclero 3 years ago and only developed serious internal involvement this year but my skin is better so it's not all bad.

Scleroderma is something of a tailor made disease, it effects everyone differently and progresses differently, no one can really call it.

Take care and keep posting.
Amanda Thorpe
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#8 CraigR

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Posted 06 July 2010 - 03:08 PM

I'd have to agree with Amanda. Everybody seems to have their own version of the disease. My first symptoms (mainly Raynauds) were 33 years ago. Even though considered "limited", it has progressed with pulmonary hypertension.

As for relationships (not something that I know about), also being in my mid fifties, it seems pretty rare for anyone at this age not to have something medical going on!

Craig

#9 Sweet

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Posted 07 July 2010 - 12:21 PM

Hi Wendy! Welcome my love! So very glad you've joined us.

I was diagnosed with positive definitive blood testing and symptoms. I have CREST, for the past 10 years. Many, many people are in the "wait and see" category, so you are not alone. I look forward to knowing you better. :flowers:
Warm and gentle hugs,

Pamela
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#10 Lynnie

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Posted 07 July 2010 - 01:04 PM

Hi Wendy,

Welcome to the sclero family! I agree with everything everyone has said before me. I have been diagnosed for just over a year but have had symptoms longer. I have CREST/limited scleroderma.

And now for my little piece from me. :lol:

Wendy, our roads are for journeys not destinations. It is surprising what each new day brings to our lives when we aren't looking. Sometimes our disease comes and bites us, others days it doesn't but it never leaves us. For me personally I wear my disease, it doesn't wear me.

Before it came I was just simply me, outgoing, easy to get along with and I tried to do my best by people. I'm still that person eve though I have health issues. Yes, I get frightened. I look to my friends and family and here to my cyber family when things get too wearing and scarey because someone has had it before me and can comfort and reassure me.

Wendy, just reach out to people. Be you and smile and you'll be surprised who smiles back at you. You never know, someone will see YOU not an illness! Never feel alone because you aren't, my love, "us lot" here are proof of that!

blessings and keep posting okay?

Warm hugs,
Lynn x :emoticon-hug:

#11 Sharon T

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Posted 07 July 2010 - 03:46 PM

Okay, based on the previous posts that are loaded with great advice and incredible empathy, I'm now certain that scleroderma makes one a better person. That's my story and I'm stickin' to it! And where else would I have learned about a "dummy spit" and a "tanty"? :lol:
Sharon T.

#12 bookworm

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Posted 08 July 2010 - 07:32 PM

Hi Wendy, and welcome to the Forums. I agree with everything that's been said. You didn't mention whether your specialist is treating your symptoms. I was diagnosed with CREST/Limited (which they call something else now) about 25 or 30 years ago. At the time, the only symptom I was having was Raynauds and the doctor advised me to wear gloves all the time. I didn't wear them all the time, but I did begin to wear them in the grocery store and cold places. Anyway, my disease didn't seem to change until about five years ago, when I got my first digital ulcer. I am now taking Cilais for that and I recommend it at the first signs of an ulcer!

#13 bookworm

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Posted 08 July 2010 - 07:39 PM

Hi Wendy, I can't seem to finish this post! I don't know what I am doing wrong! Anyway, I also (about five years ago) began having GERD and trouble swallowing. It turned out that treatment GERD helped it as well as the trouble swallowing, as the two were related. Anyway, permanent damage can be done if you allow GERD to go untreated.

Also, there are many things you can do to help your Raynauds. Be sure you stay warm -- not just your hands, but your whole self. There are a variety of hand warmers that can go into your pocket or that you can take along in the car. ALways wear gloves in the grocery store and try not to ever handle ice. In the frozen aisles, you need the gloves and also you need to get out of the frozen section as quickly as you can! Others can give you lots of advice on keeping warm. Mainly, I just wanted to say that if your doctor isn't treating the GERD and recommending things for the Raynauds, maybe you need to look around. It is so important that your doctor understands and knows something about Scleroderma. There are specialists listed on tis site from every state in the U.S. and in other countries, too.

Good luck with all. I hope we all get to know you better.

Mary in Texas