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I'm happy today because....


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#81 Jac

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Posted 01 May 2013 - 12:42 PM

Hey - no-one posted here for a while but I found it!! (Am still exploring)

 

I had a good day today, the first for several weeks even though I am waiting in dread for hospital appointments, I managed to put them out of my head and enjoy some sunshine which was nice.

 

When the sun shines, everything feels happier doesn't it?



#82 judyt

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Posted 01 May 2013 - 01:49 PM

Hi Jac,

 

Try not to dread hospital appointments, try to make them an adventure.   There has currently been a discussion on another thread about how to make those days more bearable.  

 

See if you can find that conversation and try some of our strategies.

 

Good luck

Judyt



#83 Jac

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Posted 07 May 2013 - 11:20 PM

Hi Judyt - It would be good to read how others cope with appointments, particularly the more invasive ones like endoscopies etc - it's a big forum, you couldn't link me could you an entry or place to find some helpful stuff?

 

THANKS!



#84 judyt

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Posted 08 May 2013 - 03:11 AM

Hello Jac,

I am not much good at finding stuff myself and creating links is way out of my scope of ability I am sorry!!   Jo is the expert there and hopefully she will see your post and do the honours. 

 

In the meantime I can give you a little bit of help from my own perspective.

 

First of all, I am able to not be concerned about invasive tests.   I have a naturally inquiring attitude and I really focus on looking forward to the report at the end which tells me what is going on.   I really don't like not knowing what is causing trouble.   Once I know and understand the ins and outs I can focus on the remedy (if there is one) or at least whatever is the best way to manage things.   Do your best to educate yourself about your disorder and don't let anybody talk over you or treat you like a fool!!!   It does happen, and often you will find that they are just covering up for their own lack of knowledge.   Knowledge is power so make sure you are in control on that front.

 

In my view a Gastroscopy or Endoscopic Ultra Sound (2 similar procedures through the mouth) is a piece of cake as long as I have a sedation.   One can choose to tough it out or to be away with the fairies.   I have had a TOE (trans-oesophageal endoscopy) looking at my heart from the oesophagus where I had to be awake and in fact it was not too bad even though it seemed to take forever because my oesophagus is so floppy it was hard for the guy doing it to get a good picture.   I had an EUS last week and was more or less awake for most of it and I coped perfectly well.   If you choose to have a sedation you need to be there longer for the drugs to wear off and then get picked up from the ward by somebody responsible as you are not allowed to drive or be travelling alone.   Those who have to take time off work usually prefer not to be sedated but I take it as an opportunity to have an extra rest and be looked after.   Indulge yourself, you deserve it.

 

Because of the amount of damage to my digestive tract my large bowel and rectum are badly affected so Colonoscopies are a regular feature of my life.   I am not at all keen on them, not the procedure itself because I choose to be asleep but I find the preparation horrific.   Some people are able to breeze through the prep. but not me.   However, it has to be done so I just get through as best I can.   Fortunately Colonoscopies are about 5 years apart these days so it is not so bad.

 

When you manage to find some threads by Shelley and miocean you will see that they like me prefer to make an adventure out of those days if at all possible.   Have the day clear of all other responsibilities and things that need to be done.   Have your partner or a close friend to spend the day with.   If you have to travel to get to the centre you are to have the procedure at, make sure that you have plenty of time to arrive in an unhurried manner and have some sort of treat lined up for afterwards.   Usually with these sort of things you must be fasting (no food or water for at least 4 to 8 hours beforehand) so by the time you are released food is the first priority.   Plan to go to a nice cafe or restaurant as a first stop and get yourself fed.   It can be fun to eat out and if you plan ahead it doesn't have to be too expensive.

 

Sometimes you might get an appointment time which is not very convenient, too early or too late, to get to and from your home.   I have found that if I telephone the booking clerk and have a chat then a more convenient time can usually be arranged.   The first time I did that I was surprised at the sympathetic response I got and my needs were quickly allowed for.

 

In this country we are given a copy of the report as we leave if the appointment has been in a public hospital but in a private practice it is usual to have to wait to hear the results from the referring doctor.   However, we here on the forum recommend that you always ask to be included as a recipient of a copy of the report.   I always ask and usually get my report by email or mail but sometimes I get forgotten so have to remember to ask my doctor for a copy.   Other countries have different protocols but in any event you are entitled to a copy of every report so make sure you get it and keep a file for future reference.   These details often become vital if you have to change doctors or hospitals or apply for disability support.

 

I have probably rattled on for long enough this time.   Please ask if you have more or different questions and somebody will come along to help.

 

Best wishes

Judyt



#85 Joelf

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Posted 08 May 2013 - 01:23 PM

Hi Jac,

 

As Judy's requested I've included a couple of links for you on the preparation for an Upper Endoscopy and a previous thread on Endoscopy which I hope you'll find helpful.

 

If you view our medical pages and put the name of the procedure in which you're interested in the search engine, that should bring up lots of information for you.

 

Please do let me know if you need any more help finding your way around the forums.

 

Kind regards,


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#86 Jac

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Posted 09 May 2013 - 12:13 PM

Hi there -

 

THANK YOU! so much for that ,it was so useful and I feel a bit better.

 

I have my date now of Monday 20th May to go and have all my tests done so am nervous but feel a bit more encouraged that it will be ok.

 

 

The hospital have agreed that my Mum can be there before and after and that will help me a lot.

 

Jac x.



#87 Joelf

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Posted 09 May 2013 - 10:03 PM

Hi Jac,

 

I'm so pleased to hear that you're feeling a little better. I think it always helps to have someone with you (especially in the beginning) and who better than your mum? :)

 

Do please let us know how you get on with your various tests on 20th May.

 

Kind regards,


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#88 Shelley Ensz

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Posted 14 May 2013 - 01:30 PM

Hi Jac,

 

That's great that your mum will be with you, before and after, for your upper endoscopy.

 

My personal tip is that for every medical test, appointment, or surgery, it is tremendously helpful to schedule something right afterwards (that you will be able to handle in your condition), that you consider to be a treat.  For my husband and I, our standard option is that the "victim" for the occasion gets to pick the restaurant of their choice afterward.  For many procedures, you aren't allowed to eat for hours (or sometimes even days) beforehand, so the restaurant date also provides much needed nourishment in a hurry.  And for that reason, we usually know of a few good restaurants right by the clinic.

 

It doesn't necessarily matter that it's a restaurant. Maybe for you it will be going to a movie. Whatever it is, though, be sure to set your heart upon it ahead of time and to put your mind on looking forward to it.  Then whenever you are tempted to worry about the appointment, in any way at all, take that as an opportunity to switch your thoughts over to the GREAT time you are going to have afterwards (at the restaurant, movie, coffee shop, or whatever you have planned.)

 

This helps keep fear from running away with you and keeps you focused on something fun and positive, which the person accompanying you will really appreciate. My husband and I also make a point of always bringing a good book with us to all appointments. Then if -- or should I just say WHEN -- your appointment is running late, you can just happily exclaim, oh great, I get to read another chapter!

 

It takes a force of will to move your mind to the positive aspects of the appointment. But if you force yourself to see the amazing scenery on the way to the clinic, the wonderful or at least interesting people you meet at the clinic, the great time you had reading your book, and the fabulous meal or treat you are going to have afterwards, then you will find your mom, and even others, eager to go along on any other upcoming appointments.  And you won't be boring your friends with details of the ucky procedure but rather with all the great fun you had, surely adding more sparkle to a sunny personality and not letting the time-consuming chores of illness drag you down.

 

Please let us know what you plan, and how it all turns out, okay?

 

:emoticons-group-hug:


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.

#89 Jac

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Posted 22 May 2013 - 12:07 AM

Hi Everyone!

 

Thank you soooo much because what I learned here helped me on Monday and the Dr said I was a model patient :emoticons-line-dance: .

I had the local throat spray for the endoscopy and sedation for the colonoscopy. Both procedures went fine and the endoscopy even without sedation was ok - no worse than visiting the dentist.

Initial results were encouraging - some damage but not too bad. I have to go back in a couple of weeks for biopsies results.

 

TIP - If you're having a preparation for bowel cleansing - a sip of clear lemonade held at the back of the mouth whilst you gulp a gobfull of the 'stuff' and swallow - goes down a dream and you don't taste it so bad.

 

I was a bit rough yesterday but feel better today and am going out for a nice lunch with Mum!

 

Feel happy again.



#90 judyt

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Posted 22 May 2013 - 03:08 AM

Hi Jac,

 

Great news that everything went so well.   Just shows what a little bit of careful preparation can do to help in all sorts of situations.   Hope you find that the biopsies are not showing anything nasty.

 

Good luck

 

Judyt



#91 Joelf

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Posted 22 May 2013 - 11:25 AM

Hi Jac,

 

I'm so pleased to hear that everything went smoothly and I do hope that the results of your biopsies turn out okay.

 

Hope you enjoyed your lunch as well!! :)

 

Kind regards


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#92 miocean

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Posted 23 May 2013 - 04:10 PM

I am happy today because I cried.          :crying:        

 

I know that sounds very strange but I haven't been able to cry since 2004. I can clearly remember the last time I cried, I was in the hospital after the scleroderma crisis when I stopped breathing, my heart stopped, and my kidneys failed. It was about my third week in the hospital and I had test after test after test with no end in sight. I was having a non-invasive sonogram of my legs when I started crying, I just couldn't take it anymore. I went back to my room and cried some more and then didn't cry again...

 

...until last night. I had a particularly difficult day. I was looking forward to a day on the beach and it was overcast and 98% humidity. The air was full of pollen and everything was green with it.  I was out of sorts and took it out on my husband.  We decided to go to a garden center and finish buying plants but even with my oxygen on it was hard to breathe. When we got home I was soaking wet, hair and clothes. I slept on the couch but when I got in bed for the night I started to cry. My husband asked me what was wrong and I wailed, "I just feel so broken."

 

I was physically, mentally, and spiritually broken. I try so hard to be strong and positive and was just done. I was sorry I took it all out on my husband. 

 

I know we are not supposed to use quotations on the forum but there is part of a poem I remember: "and in breaking I make myself whole again."

 

I am whole again.

 

miocean

 

 


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#93 Shelley Ensz

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Posted 23 May 2013 - 08:04 PM

Hi Miocean,

 

I am sad because you cried. :crying:

 

But happy if you feel better now because of it. :yes:

 

And I am thrilled beyond measure that tech support got our Mac/Emoticons fixed, just in the nick of time for this. :terrific:

 

It helps to reach rock bottom with stuff. The actual problem might be that you don't reach bottom soon enough, or often enough, because crying from stress helps to detoxify the body and adjusts hormone levels.  So next time you feel the urge to splurge on a few tears, just do it, and let your kind hubby know that you are just "detoxifying".  And actually you are, because stress causes toxins and crying releases them.

 

We try to discuss stressful days or encounters to see what we could do differently next time to handle any similar situation better.  Today we had two stressful events happen at the same time.  In discussing it over dinner, we decided that neither of them absolutely had to be handled right that minute.  I mean, the world still would have continued turning on its axis at 1,000 mph even if we had gone on strike for a few minutes to think things over.  Fifteen minutes would have been about 250 miles of world progress even if we hadn't lifted a finger, right?  If we had just taken a few minutes to step back and analyze things, we could have come up with a more relaxed approach instead of elevating our adrenaline levels.

 

Next time the beach is suddenly cancelled on you, see if you can replace it with another endorphin-raising event.  Perhaps a romantic afternoon at the movies in air conditioning would have been more welcome, and easier on your nerve endings. But, life happens, stuff happens and we are all great Monday-morning quarterbacks, aren't we?

 

Good on you for crying.  It's oddly refreshing, isn't it? 

 

:emoticons-group-hug:


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.

#94 Jac

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Posted 01 June 2013 - 02:29 PM

I think I'm still happy - :emoticon-dont-know:

 

I got the results from all my GI testing:-

 

I have gastro-oesphagus refulx disease (which I had guessed) and there is some scarring in the gullet which is hardening and may need some treatment (stretching I guess) at some point.

 

A few problems with my stomach and duodenum which can be treated with meds (more meds).

 

Some inflammation in the bowel too which he (gastro doctor) says is ulcerative colitis.

 

So few problems but seemingly treatable.

 

I'm waiting to see a dietician - I'm keen to control as many symptoms as I can through diet etc.

 

I feel more relaxed about future tests now too,of which there will be many.



#95 Joelf

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Posted 02 June 2013 - 08:51 AM

Hi Jac

 

I'm very pleased to hear you're still feeling more positive and although you have got some problems going on, at least you can tackle them now you know what's happening and a suitable treatment can be started for you.

 

I'm sure it's the fear of the unknown, which is so hard to bear.  ^_^

 

Kind regards, 


Jo Frowde
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#96 Shelley Ensz

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Posted 05 June 2013 - 04:38 PM

Hi Jac,

 

Wow, it sounds like you have g.i. issues from stem to stern.

 

When is your dietician consult?

 

We have a section on the main site you might want to read, about Diet and Scleroderma.

 

There are some food and lifestyle things that can lessen heartburn, see our Heartburn pages for that. Elevating the head of the bed, when done as recommended, can really help. But elevating it wrong, like by trying to elevate with pillows, will backfire because it puts more pressure on the stomach and actually worsens heartburn.  Also it does not have to be much!  One or two bricks under the head of the bed is all it takes. You don't want the bed to look like a sled, or to feel like you are going to slide right off it in the night; you only want to put a little bit of gravity to work for you.

 

Thankfully there are a lot better treatments for ulcerative colitis now, but it is still no walk in the park under any circumstances.

 

: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.

#97 Jac

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Posted 05 June 2013 - 11:20 PM

Thanks for that.

 

My diet and next Gastroenterology appointment is 14th August.

 

I am finding ways of relieving some of the symptoms already - I have cut off coffee (I drink espresso) and that has helped quite a lot. I have cut down on tea and switched to green tea. I don't drink alcohol so that isn't an issue. I have cut out orange juice and switched to apple or cranberry juice.

That has made quite a big difference.

 

I have also found that raw peppers, onions and tomatoes irritate me, which is a shame because I love salad but I can't really have them raw. But I can tolerate them cooked so can maintain a healthy diet.

 

So small changes are already helping and it's a bit of trial and error at the moment. And very much what works for me because I'm learning this disease affects us all differently.



#98 miocean

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Posted 30 June 2013 - 01:20 PM

:lol: I am happy today because I have a medically free week coming up!!!  :lol: 

 

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

 

:woohoo: 

 

miocean


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#99 Joelf

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Posted 30 June 2013 - 09:45 PM

Great news, Miocean!!

 

I'm happy for you too!! :bravo:

 

:emoticons-line-dance:


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#100 miocean

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Posted 07 July 2013 - 03:54 PM

My medically free week is over.  :(  It wasn't totally medically free because I did have to contact some doctors but I had no appointments. I also had to fill out the forms for the evaluation at the lung transplant center tomorrow and get my paperwork in order. I've decided not to worry about being perfect with it because I haven't found one doctor or center yet that has been perfect with me!

 

Ha!  :D

 

miocean


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