Sandy B

I'm happy today because....

114 posts in this topic

That is truly good news, Miocean; I'm feeling happy for you, as well!! :emoticons-line-dance:

 

Enjoy your time on the beach!! :woohoo:


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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This is an old thread but it is the right place to put this and might give us all another reminder to remember what we are happy for.

 

:emoticons-line-dance: I am happy today because although the leaves are changing color it was a warm, beautiful day, I was at the beach, was able to go it the ocean and I had it all to myself!! :emoticons-line-dance:

 

miocean (I share :P )


ISN Artist

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I'm so happy today because I still have Sclero Forums in my life; everyone out there made me feel like I never missed a beat.

 

Thanks to all the wonderful people here!! You all mean so very very much!! :balloons:

                                                                                      sincerely, northstarhope*


northstarhope* :emoticons-i-care:  :thank-you: 

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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?

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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

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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!

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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

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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,


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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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.

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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,


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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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

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.

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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.

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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

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