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jad12

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

64 posts in this topic

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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Hello Jad12

"I have no signs of organ involvement yet, according to the blood tests."

I am by no means suggesting you have internal organ involvement but blood tests can be deceiving and don't necessarily mean anything, I can attest to this. I had myocardial fibrosis and then heart failure but my ANA & SCL-70 were negative as at diagnosis and now. Have a look at our video about diagnosis of scleroderma which talks about this very point.

 

I hope things go well with your boss and, yes, the waiting is a killer.

 

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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I told my sister this morning and she took it better than I told it. My mum is away camping and I really didn't want to have to call her anyway so my sis is going to tell her. I also told my boss who also took it far better than I did and tried to reassure me, which was nice. I gave both of them a copy of the FAQ I got online too. I feel better that everyone close to me now knows.

 

Don't worry, I'm taking the test seriously. I'm calling them to reschedule the lung one on Monday and I wish they'd hurry up with the heart one. I'm also contacting my local doctor on Monday to get the blood pressure tests started. My internist said on Friday if my local guy hadn't called yet to call them so I will. Nothing I can do to speed up the rhumatologist...it's socialised medicine which I heartily endorse (if not the wait time).

 

My local doctor is a block from where I live so I can just walk over to have that done regularly- do you guys do your own BP or have a clinic take it?

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Hi Jad12,

 

The blood pressure tests for Pulmonary Hypertension are not the same as the 'regular' BP tests.

 

For 'regular' BP tests I have a blood pressure monitor at home with which I can take my own BP, although that is one thing that's never been a concern for me as my BP has always been normal / low; we bought the monitor for my husband who does suffer with high blood pressure (probably the strain of being married to me! ;)) and he always gets 'white coat syndrome' whereby his BP shoots up as soon as he goes into a doctor's surgery to have it taken.

 

What a gorgeous picture of your dog on your avatar! :wub:


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hi Julie,

I understand your frustration about the wait for the Rheumatologist, and for all the other tests you need. There are ways to speed up the process, one is to have a crisis and just turn up at A & E the way I did, but it is hard to invent a crisis. However, your general practitioner might be prepared to help you either by pushing your referral or by simply admitting you!!! Don't sit back and wait, particularly with Diffuse because it can move so fast. I suppost it really depends on how well you get on with your general practitioner. Mine was great, she told me to take myself to A & E and ACT sick. Mind you I had already had a crisis vomiting blood when I was in Tauranga and Tauranga Hospital were the ones to confirm my diagnosis.

 

You can't just wait, you must be your own best friend and advocate for yourself.

 

I have found the hospital system excellent once I was in and even now when I go to a specialist on my own insurance they tend to want to treat me in Auckland Hospital so I am getting the best of both worlds. You are obviously getting yourself well educated so make sure the people you see understand that you know what you are talking about.

 

Don't listen to anybody who says 'you can't do that' your response should be 'just watch me'.

 

Monday is not far away now. Get hold of the Booking Clerk for the department you have the appointment for and don't hang up until you have a new date and time. If you are lucky your appointment letter will have the name of the Booking Clerk, if not ask. I have done that before more than once. The other thing is that hopefully your hospital has a system where there are Nurse Specialists in the various departments assisting the Consultants. Get to know who the Nurse Specialists are and talk to them if you need to.

Another tip is to memorise your NHI number, it will be at the top of your letter. Start every phone call by quoting your number, that gets them going. Hardly anybody knows their number and if you do they take you seriously.

 

Best wishes and keep in touch.

Judyt

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Hi Jad12

 

I have been drinking decaff. tea for years. There are lots of different brands and they are just the same as their ordinary T-bags. Anyone who says they can tell the difference is fibbing as I always give visitors decaff. and no-one has noticed yet. Just make it the way you would any ordinary tea; I have milk in mine.

 

Enjoy

Helen

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I didn't know there was decaf tea. I'm going to buy some.

 

I got a new appointment for the lung test on Friday. They were really good about it, so was the boss giving me the day off so I could go. I got a BP test today at the doctor office (I thought since it was a referral they would be free...but no. Judy, do you pay for every one you get as well?) I took your advice and have my NIH number on my smart phone so it goes with me everywhere. I also booked my general practitioner for Monday afternoon so I can bring him up to speed and got his email so I can email him my other blood tests that the internist emailed to me.

 

What's the difference in BP tests? I didn't realize there were different kinds of blood pressure tests. How do you keep track of pulmonary hypertension then?

 

The dog in my avatar is her as a puppy, she did grow into those ears somewhat. She's about two now and the best dog I ever had. I got her from the SPCA.

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Hi Julie,

Pleased to hear that you are staying on task!! :emoticons-clap: Friday is not far away, I have found that when I have had to change appointments it is relatively easy and people do understand that we do have a life even if it is a bit limited sometimes.

 

The way I understand Blood Pressure is that the ordinary test that is done with a cuff around your upper arm measures the way your heart is pumping the blood through your arteries and back through your veins. The higher number measures when it is pumping and the lower number is when your heart is resting in between beats, so a result of 130/65 or so is satisfactory and 200/100 is very unsatisfactory. Keep a note of the results each time you have it tested so you can see what is happening.

 

Pulmonary Hypertension is caused when the heart and/or lungs are not functioning properly and pressure starts to build up within the Right Heart and Lungs. This is a VERY clumsy description but you will find more detailed information in other places on this site. I had Pulmonary Hypertension for a while in 2009/10 and started to panic but it was due to my having had Rheumatic Fever as a child and my Mitral Valve was becoming calcified. The PH showed up with an Echocardiogram and that is why you must have an Echo to check, once a year is probably the ideal. In my case because the PH was Rheumatic plus I have Sclero, the Cardio Surgeon went through a procedure to free up my Mitral Valve and test my right heart pressures much earlier than he would have for another patient. Now I have no PH and my lung function is within the normal range for my age.

 

I presume you saw a Nurse today when you had your test, and yes I do usually have to pay about $17 for a visit like that and twice that amount to see the doctor. I am very lucky where we are at the moment, that the charges are VERY reasonable because of the way the Practice has chosen to structure itself. It is a teaching Practice so we often have extra staff who are Registrars and are still learning. However we have sold our beach house (where we spend most time) and move in 6 weeks time. Then I will have to find a new general practitioner and I expect it will be in Auckland City and I will pay substantially more.

 

There is a discount system available called a High User card. If you don't already qualify for a Community Card (or maybe even if you do I am not sure) your general practitioner can apply for a High User Card. To qualify you have to have had 12 visits to general practitioner, Nurse (I think), Hospital or any other Specialist within 12 months. If you count up you will very likely find that you are on your way to that total already this year. As well, once you have had 20 (I think) prescriptions as a family there are no more fees until the next year.

 

The other thing I would suggest is that you get a copy of every letter, test result or anything that refers to you and keep a file. Your general practitioner will make copies of everything that comes in about you, but you have to ask.

 

Somewhere, and I think it is on this site, there is a very good description of heart function, put up by somebody who belongs to a support group which had a visit from a leading Cardiologist talking about PH I think. Maybe Amanda or Joelf will remember where it is and give us a link.

 

Keep up the good work on your own behalf.

Judyt

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Hi Jad12,

 

I'm afraid I can't find the exact link that Judy mentions, but I've included a few links to give you a little light reading and hope you'll find them helpful and informative. As well as the link I previously included here's another describing Pulmonary Hypertension and another of our links about the diagnosis for it. It can really only be diagnosed correctly by Right Heart catherterisation and an Echocardiogram. I've also included another link to our Cardiac Involvement page and this includes one of Amanda's excellent videos to give you more information.

 

In my own case I have an ECHO and ECG every year and as far as I understand if these tests show any signs of PAH (which thankfully they don't) then I would have a right heart catherisation to confirm the diagnosis.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hello Jad12

 

Have a look at our video about pulmonary hypertension. Pulmonary Hypertension (PH) is a high pressure in the arteries between the heart and lungs or pulmonary arteries. The pressure backs up into the right side of the heart eventually causing right sided heart failure and eventually death. Initially there may be no symptoms at all then later symptoms can include shortness of breath, weakness, and fatigue with exertion.

 

The course of mild to moderate pulmonary hypertension in scleroderma is still unknown and it’s possible that it may remain unchanged for long periods of time. It is so important to check for it early on and that's where the ECHO comes in, ECHO can suggest but not diagnose PH, it can only be diagnosed by right heart catheterisation. .

 

As you can see it's an entirely different thing to regular high blood pressure!

 

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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I'm just adding a warm welcome to all you have already. Finding out about the disease is very difficult; so is knowing what to do with that information. This forum is a wonderful resource and hopefully you will find the doctors you need. Best wishes.


Kay Tee

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Thank you everyone. I was feeling quite panicked for a while there right after the diagnosis was confirmed. My boss gave me today off to go with Hubby to HIS appointment (and he had good news) and we stayed in Auckland for the night and ate a huge breakfast where I scarfed down bacon, coffee, orange juice, pancakes, eggs and toast and greek yoghurt with berry compote (hah!). My boss has been very supportive.

 

As a result of the trip and the time to reflect I feel much better.

 

I called the Hospital to see if they could schedule both tests (lung and echo cardiogram) together but they couldn't because the lung equipment has no queue and the heart one does but they made the effort so check so I was happy. I didn't want to be off work if I don't have to be but fair enough- I get that one in a couple weeks. The first thing the schedulers asked me was for my NIH number which I had right on my phone thanks to the excellent tip! :emoticons-clap:

 

I have paper copies of ALL my tests- I'm going to organise a binder to keep them in. I'm also recording anything new that happens. I also emailed them all to my general practitioner so he has them before my appointment on Monday when I see him to bring him up to speed. I'll be setting up a schedule for regular BP checks with him then.

 

Awesome information and tips from you all- especially that frequent flier doctor card. :P

 

My internist also gave me a time frame for the rheumatologist- a month or two unfortunately but oh well.

 

I'm also keeping notes on my BP though my general practitioner is as well.

 

Thanks for the tips everybody! That was very helpful. And oh yeah, got some decaff. tea at the shop today, it's not too bad.

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Hello Jad12

 

You're turning into an excellent self advocate! I am glad your boss is on board and hope the tests show nothing and you can keep working and living the life that you are.

 

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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Well my lung test showed normal volumes in and out but low gas exchange. Doh. I have a copy of the test and I'm going to look the numbers up. So the technician is recommending a chest x ray. On top of that I made the mistake of going to a terrible restaurant for lunch. :(

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Hi Julie,

 

Why am I smiling? Because of the lunch?

 

If you find a site that will help you unravel the mysteries of your lung function numbers and letters!! let me know will you. I found one once and could never get back to it again.

 

Judyt

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Hi Judy and Jad12,

 

Here's a link that may give you the information for which you're asking Understanding your breathing test results.

 

Jad12, shame about your lunch!! ;) :(

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Thanks for the link.

 

We normally munch out on yum char whenever we're in a city big enough to have it. This city usually doesn't. We did find two yum char places, one of which is due to open tomorrow (yes, tomorrow, grrr) and one probably within the month. This is a pleasant surprise and we're going back in a couple weeks just to eat there. We may as well do that for my echocardiogram, that's about in that time frame.

 

Anyway, the man gets a little bearish when he's hungry and he had food on his mind, lol.

There was this fantastic looking food coming out of this place, right? I mean yuuuuummmmyyyy looking gourmet pizza, huge golden fries, various meaty looking things... (there was seating on the street so I could see how nice the food looked) And it was packed. Obviously a local favourite. "Let's eat here!" I said. But noooo, hubby wanted to try (are we allowed to post restaurant names on here?) anyway, the place RIGHT NEXT DOOR to it, a chain, because he'd always wondered what it was like. There were three other people in sight in the whole place. As soon as we sat down I said, "This is a mistake!" and boy oh boy was it. I ended up leaving most of mine on the plate. How can you ruin a bacon, lettuce tomato sandwich I ask you? His chicken was no better.

 

I very rarely eat out, so when I do, I like it to be good. That was literally the worst meal I have been served in about the last ten years. Lucky for them they didn't ask how it was because I intended to gently tell them there was a reason the place next door got all the business. :P The man made up for it with his famous BBQ steak and mashed potatoes for tea at home.

 

Also for fun I went shopping even though aside from a few more pairs of warm socks I don't really need anything. I went into this one nice place and the lady talked me into trying on some trousers which I did quite like but the funny part was she kept insisting they were The Pants. If they had been a bit looser in the waist I might have even bought The Pants but I like the waist a little loose and I like to wear a belt. The Pants did fit me quite well everywhere else, haha!

 

Another slightly amusing thing that happened today was the technician at the hospital said, "Have you been diagnosed with scleroderma?" And I thought, "Well, buddy, if I hadn't been, you'd have just given me quite a shock!"

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This stinks. I was hoping the thickening would stop at my elbows but I feel pulling in my upper arms to my arm pit now. My hands are worse too. I'm going for the echocardiogram Thursday.

 

This disease is working fast.

 

On the plus side I talked to my general practitioner and he is going to run education seminars for the staff at his practice and he is reading up on the disease. He also gave me his email and is happy for me to ask him questions and said he will help me interpret any test results.

 

My husband is being very supportive.

 

I am eating all my favarite foods in case some day I can't but I am finding myself crying quite a lot.

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Oh dear Julie,

 

I am sorry to hear that you are getting worse fast, this disease really does stink, you are very right. Some of us are luckier than others I guess. Thank goodness your general practitioner is being very helpful too, but I wonder where you will find a good Rheumatologist without travelling to Auckland or Wellington or even OZ!!

 

Lots of warm comforting :emoticon-hug: hugs and a tissue to dry your tears.

Love from JudyT

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Hello Jad12

 

It can move like a whippet or a snail, whippet says diffuse, snail says limited, both systemic forms of the disease. I have diffuse and within 6 months I went from being "normal" to being a wheelchair user, unable to work or do much of anything. I spent the first year sat on my couch in my dressing gown with my emotional response ranging from asleep to hysterical with nothing in between. Crying, really? People usually cry when they experience loss and get angry for that matter so watch out for that one as well, comes flying round the corner out to get anyone and everyone.

 

Of course my disease process is not yours and who knows how you will fare, snowflakes are we for sure, personally I'd rather corn or frosted. Get it?

 

How marvellous that your general practitioner is working so closely with you and that your husband is on side, what more could you ask for? It's going to make things much easier for you in the long run.

 

Oh yes, I recommend scoffing everything you want just because you want. I lost my appetite last year (currently back as a side effect of a medication) and have a friend who can't eat anymore and we both bemoan all the time wasted on diets and the like, for what? Stuff that and stuff your face. That's my recommendation!

 

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 Jad12,

 

I am sorry to hear that your health seems to be deteriorating at the moment; it is the most bizarre disease and as Amanda says, it affects everyone very differently.

 

Your general practitioner sounds as if he's on the ball, which is a mercy and it's wonderful that you have an understanding and supportive husband.

 

Do let us know how you get on with your Echo on Thursday.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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