jad12

Hi, I am new and new to this disease as well.

64 posts in this topic

Lol Helen, luckily only the dog is around, I take her usually at five am, there are only a couple other hardy souls out that early.

One guy, a fireman who jogs has a HUGE dog the size of a shaggy pony but it seems very calm and quiet. One of my dogs is a male shepherd and he's small in comparison. I accidentally walked past it close up (it was pitch black) and it gave me a start! The fireman was ahead a little doing stretches.

 

Amber, I used to wear my wrist support to bed as well because it helped imobolize my wrist so I wouldn't wake up with it sore.

 

My knee joints are sorer than I thought but only when I squat or kneel which I've been avoiding since camping. Great, just what I need, another exercise to do while dog walking. Picture me squatting, grimacing and wringing my hands in the pitch black with a dog.

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Hello All

 

Yep I too was told to avoid NSAID's (non steroidal anti-inflammatory drugs) such as ibuprofen, aspirin and voltarol because of the damage they can cause people with scleroderma. I was using voltarol as a suppository thinking it was avoiding my esophagus and stomach but the general practitioner said it makes no difference how you ingest it, damage can still be done and gastric bleeds caused.

 

So I have not told my doctor I am taking NSAID's again (out of desperation) and I don't intend to which is a personal choice but I have to say the party line is that people with scleroderma should tread carefully when it comes to NSAID's particularly if reflux is a problem.

 

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

 

It has been my choice to take ibuprofen as I find it very beneficial for joint pain, never been told not to take it but as I already had the strictures in the oesophagous, heart burn and swallowing problems before I started it, which might make a difference. My Rheumatologist put me on a PPI (proton pump inhibitor) to help improve the oesophogeal problems. The balance between the medication has been fine for me so far.

 

Night Owl

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Well, the doctor just confirmed I've got scleroderma (no surprise) and it's diffuse. Also no surprise, but not welcome anyway. So that stinks. Now I have to tell my extended family. I was just waiting confirmation.

 

I ran across two books I'd like to own: "The First Year: Scleroderma" by Karen Gottesman which looks quite good and "The Scleroderma Book: a guide for patients and families" by Maureen D. Mayes.

 

Anyone else on here got the diffuse kind?

I wonder how long I can keep working, it's supposed to be a highly variable disease right?

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Hi Jad12,

 

Sorry to hear that you have had your diagnosis of Scleroderma confirmed, although sometimes it can be a relief to know exactly what you have to deal with. I found the worry of not knowing why I felt so unwell and the uncertainty was one of the worse parts of it.

 

I've got copies of both those books you mention and have found them informative and helpful. We also have some ISN books "Voices of Scleroderma" and I've included a link on Diffuse Scleroderma which includes one of Amanda's excellent videos which I hope will give you some more help and advice. It is a very variable and complex disease; part of it's complexities is that it takes many different forms and affects sufferers in many different ways. I know Amanda took early retirement as she was unable to work due to having diffuse scleroderma and I think that has applied to some of our other members as well and I'm sure they'll be along to give you more first hand information.

 

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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Thanks, I'd really like to hear from other people about how they coped or didn't at work. I decided to buy both, I got The Scleroderma book on kindle for just $12 U.S and I'm most of the way through it. I gave the hubby a copy to read. I ordered "The First Year" from a book store, who have to ship it in from the U.S so It will take up to two weeks.

 

I'm taking myself out for brunch this morning- I usually don't do that kind of stuff because I'd rather make my own and save the money but priorities have now somewhat shifted! :P

 

Did you guys tell your bosses straight away or wait until you had to? I'm definitely not telling co workers, people can be weird.

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Hi Julie,

Sorry to hear that your disease is Diffuse. Just hope that it doesn't get too widespread. Thankful that you know at this stage of your life. As you have probably read already I had to wait until 2003 to get a diagnosis having had the first signs in the mid 1950's. Thankfully I have CREST without any noticeable skin involvement, and I retired when our first child arrived, but later on when I thought I would like to go back to work I couldn't really cope (without knowing why) and found it better to fill my days with voluntary work with Plunket and the Primary School Committee.

 

It is hard to know how to talk to co-workers, you are right, people can be weird. You can probably wait until you have to tell them, it probably won't make any difference in the long run if they know now or later. You might have to tell your boss sooner if you find you have to take sick days. Maybe you know best how to handle him - he is not allowed to ask you to resign because of it but that doesn't mean he won't try. Some people find they get sympathetic support and others find that their working life is made harder by people who mis-understand.

 

Best wishes

Keep in touch

Judyt

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I'm for sure going to have to take a couple sick days. I just got a notice in the mail to go to the city for lung tests but the hubby has to be in ANOTHER city at almost exactly the same time on the same day (what are the odds?) so I've called to tell them I can't make it and please reschedule. I'm sort of trying to think of a way to get the the day off for the lung test without having to explain why to the boss! :P Maybe I'll just say I'm having some tests done.

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I have another question for all of you, too. I usually have an early morning cup of coffee then drink tea with milk the rest of the day. I hate herbal tea. Is there anything that tastes like normal breakfast tea without caffeine in it? I can't survive all day without multiple warm drinks though I don't mind swapping the coffee for something else, as long as it's hot.

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Hi again Julie,

We are having a lovely warm autumn day here today - what is it like in your neck of the woods? Is your lung test somewhere not too far away like Tauranga? or do you have to come to Auckland?

 

When it comes to caffeine, it took me a while to get my head around the idea of caffeine free drinks. I really have never liked tea, Chinese or Indian. Somehow it just dries my mouth out too much. I don't like Herbal teas either, but Fruit tea is Ok. There are Herbal and Herbal if you know what I mean. Some teas are just flavoured black tea and others are made of an extract of the actual fruit or herb. I quite like those, particularly Peach. I buy the prepared one which is available in the supemarket in a big bottle and if I want it hot I just heat it in the microwave.

 

Decaf coffee is fine. We have a small espresso maker at our place, and I make espresso for breakfast and dinner. I get decaf and my husband has regular. We seldom drink Instant, too many nasties for my liking, but there are quite nice decaf Instants if that is your only choice. One of those stove top espresso makers would be my choice if I couldn't have the automatic one we have got.

 

No chocolate has been a hard one, it just doesn't seem fair to have to cut out all the comfort foods. For a while over the last 6 months I also had to avoid milk and milk products including my beloved icecream, but my general practitioner suggested I try Lactobacillus Probiotic Capsules and they seem to have done the trick. I took 1 capsule a day for 10 days and I am fine now, just hope it lasts. It is the regular bouts of diarrhea that strip the good bugs out and it seems to take for ever to get them all back again.

 

The only comfort I can give you about the no caffeine thing is that eventually you get over the craving and other things fill the gap.

 

I really hope your lung function test comes back OK, particularly at your age.

 

Judyt

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Yes, it's in Tauranga and his appointment is in Auckland. He asked me to take the day off and go with him but I'm going to need my days off to go to Tauranga so I guess he's out of luck.

 

I didn't even think about caffeine in chocolate yesterday. I rarely eat chocolate because of the calories, not the caffeine and yesterday I was supervising a bunch of kids and at the on site tuck tent they had a chocolate bar with coconut and I grabbed one. Yum.

 

I like Chinese green tea but we looked it up and it also has caffeine. Your peach drink sounds yummy, I love peaches. I'll see if they have that anywhere close by that I can get it. Come to think of it I love apples too, so hot cider would be great! I've only ever drunk it as a treat before.

 

Thanks for the tips, why didn't I think of that? :terrific:

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Oh and Judy, yeah, it's toasty warm here, yay! After a miserable summer it's nice to have such fine days. Took the mutts to the beach this morning and watched the golden sun come up. My garden is even still producing strawberries! I think it's time to get the frost cloth on the young avo tree though just in case. I meant to do that today and forgot.

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Hello Jad12

 

Caffeine is bad for Raynaud's hence the lack of caffeinated drinks and chocolate and it's not good for reflux either, however, as I have both mildly I ignore this completely! :emoticons-clap: :emoticons-clap:

 

I also have diffuse scleroderma and for me it had been a long and difficult journey and continues to be, I can't pretend otherwise. As you say thought scleroderma is an unpredictable disease that affects everyone differently. What I would say is that you need to treat it with the utmost urgency which means having all the necessary tests like lung function, ECHO and any other tests the rhuematologist thinks necessary. Diffuse can move like wildfire and needs to be treated straight away and on that note which immunosuppressant does your rheumatologist recommend?

 

I was diagnosed at 39, off work for a year and ended up taking ill health retirement at age 40, a year after being diagnosed and thankfully I had a manager who did everything she could to help me. I would get some advice from occupational heath etc, here in the UK scleroderma is likely to be covered under the Disability and Equality Act 2010 which means my employer would have had to make every effort to enable me to return to work (impossible in my case) and I would be allowed time off for hospital visits that would not count as sick leave and therefore not count against me.

 

If your diagnosis of diffuse is correct you are going to have to tell your employer at some point, there's an old French proverb something like there are two things you can't hide, smoke and love...add to that diffuse scleroderma.

 

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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As you in the southern hemisphere are preparing for colder weather, I am going to the beach! We have a lot of things that are different in our lives but the common element of scleroderma.

 

My work situation was similar to Amanda's. I worked for the first 4 months of the onset of diffuse denying that anything was wrong with me and then searching for an answer. It was really difficult. There were times when I would think, how much longer can I do this job, one I loved teaching art to little kids. Summer came along so no school, still searching for diagnosis, couldn't go to the beach because the ocean hurt when the waves touched me. I got the diagnosis of diffuse scleroderma, school started, I went back for the planning day, explaining I would need a special parking space in front of the school as I couldn't walk very well but never went into teach that year because I went into renal crisis.

 

I could say a lot of negative things about my boss (couldn't we all) but the one thing she was great at was when you, any member of your family, or even a pet, was sick or dying. It's ironic, I just came across all the retirement cards the staff gave me when I left on disability and they were all "enjoy your retirement!" Like I was going to enjoy having multiple organ damage and kidney failure! But they meant well. I used my sick leave and it just so happened that SSD kicked in at the same time my sick leave ran out.

 

It's difficult to know how much to say and when to say it. Each situation is different.

Let us know,

miocean


ISN Artist

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I haven't seen my rhuematologist yet; a fact which is bugging me- but then I just got the definite diagnosis from my doctor on Friday, though I've known what it was since my appointment on April 19th when I googled the symptoms. I've only just rung my sister and told her this morning. I have no signs of organ involvement yet, according to the blood tests. I'll be going to get the heart and lung tests as soon as they schedule them but I can't go to the one on Wednesday as I said, the husband has his own appointment that day so I'll ask them to reschedule to whatever time they can get me next.

 

I'm going to keep working as long as I can. I've got a FAQ printed out for my boss and I was thinking I may give it to her today since I am going to have to explain these tests anyway.

 

The waiting for tests and waiting to see a physio and waiting to see the rheumatologist is getting to me. I feel like something should be happening and it feels like nothing is.

 

It's good to be able to come here and "talk" about it.

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