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miocean

Today Was A Life Lesson

13 posts in this topic

Today I went to my gastroenterologist because I haven't seen him for a while and I missed him! :happy1-by-lisa-volz: I've had GI issues for the majority of my life, not just because of scleroderma but for colitis related panic disorder. I had a panic attack at an airport on the way home from a vacation two weeks ago and had to change my pants (I posted under "Happy Valentine's Day" about this.) I was fine for a few days and then started having a rolling low abdominal pain that scared me enough into making the appointment that day for today. I am due for a colonoscopy this year so really did not want to see him. However, I started thinking I may have picked up a bacteria on my travel, oh, no, I'm going to lose my kidney transplant, panic, panic, panic, more GI issues. I was very scared. That evening I didn't know if I should go to a hospital, what hospital, transplant center, call my GI doctor (he gave me his cell phone number years ago, only doctor, that ever has) panic, panic, panic. Worsened the situation. I decided to go to bed and see how I was in the morning. Woke up fine, or what fine is for me. :blink:

 

Long story short, I am fine, he is not testing for any bacteria, I don't need the colonoscopy until November. I told him I am low on magnesium and that supplements give me really bad diarrhea and cramps but my nephrologist insists I take it and he said if the nephrologist says to take it I have to take it and he will give me a prescription to help and that I am to take a fiber supplement. MORE medicine. My nephrologist has to approve it so I am waiting.

 

My dialysis center is downstairs from his office and today would have been a dialysis day and this would have been my shift so I stopped in. They let me in the treatment area and the first thing that hit me was that smell. That smell and sterile, depressing environment of people hooked up to machines that was my life for 5 1/2 years. All of the nurses and techs were happy to see me but as I looked around the room, there was only one person I recognized, a woman who had been my inspiration when I was sitting in one of those chairs. She taught full time, had dialysis 3 x's a week for 4 hours and a family. She always came in smiling and joking. She doesn't qualify for a transplant because of her weight, was over 400 lbs but has lost a couple of hundrend and still doesn't qualify. I guess she has been on dialysis about 9 years now and is hoping to see her son grow up. I pulled up a chair and we talked, something we were not able to do while on the machines.

 

Here's how the conversation went from her side: remember so and so? He died. Remember so and so? He died. Remember so and so, he had a transplant that lasted 3 months, he came back and went downhill and he died. So and so is still on dialysis but moved to a different shift. She had a transplant but it only lasted 9 years and they can't find a match because she has too many antibodies now. The guy in the chair two down, he had a transplant, it lasted a while and now he's back on dialysis (and he was there when I was there so he is still waiting for another one.)

 

It was so depressing. I don't want to go back there. If I have to take medicine to counter the medicine I guess I will have to do it. If I have to put up with leg pain to keep from having a cardiac event which could cause me to lose the kidney, I will do what I can to handle the pain (the pain is back since I started the statin again.)

 

All my labs are great, with the exception of the slightly low magnesium and slightly high cholesterol. So I will have to do what I can to manage them. This kidney is a precious gift that I need to treasure and always remember to take care of. I have had a very good transplant experience so far. I cannot take it for granted.

 

I am going to take advantage of every minute I feel good and be kind to myself when I don't. I am going to use my energy to do the things I enjoy and do as much as I can without overdoing.

 

I don't want to go back there...

 

miocean


ISN Artist

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Hi Miocean,

 

I'm glad to hear that you're now feeling better, didn't pick up a bacterial infection during your recent holiday and also that you won't need a colonoscopy until November.

 

It was so depressing. I don't want to go back there. If I have to take medicine to counter the medicine I guess I will have to do it. If I have to put up with leg pain to keep from having a cardiac event which could cause me to lose the kidney, I will do what I can to handle the pain (the pain is back since I started the statin again.)

 

All my labs are great, with the exception of the slightly low magnesium and slightly high cholesterol. So I will have to do what I can to manage them. This kidney is a precious gift that I need to treasure and always remember to take care of. I have had a very good transplant experience so far. I cannot take it for granted.

 

I don't blame you for not wanting to have to go back on dialysis again; the whole thing does sound very depressing.

 

I am going to take advantage of every minute I feel good and be kind to myself when I don't. I am going to use my energy to do the things I enjoy and do as much as I can without overdoing.

 

I don't want to go back there...

 

miocean

 

However, it sounds as if you're being very positive and feeling more encouraged.

 

Best wishes,


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 Miocean

 

Yep, they get sicker and die oh yeah and remember they get sicker and die. I recently had a moment of realisation about this with the people I know who have scleroderma and the people I have known who had scleroderma and I thought "I want out! Can't meet another person with scleroderma who is going to die on me assuming I outlive them." I got over it though because I'm still here.

 

You have a bit of a double edged sword, someone died so you could live again but that doesn't mean you suddenly live some magical, wonderful life. It means you live life like the rest of us.

 

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 want out too - can we organise a revolt? Sclerodermians unite - refuse to accept this thing we have.

 

Shame that doesn't work, but it should because it is against our human rights to have to suffer like this.

 

These last two weeks have made me think a bit and although I have had some bad moments - like when I thought my stomach had shut down permanantly - most of the time I feel confident I will recover at least enough to get back to something resembling normal.

 

I can understand how you feel in particular Miocean, you are allowed your grey days, and as for the Bureaucracy!!!!!!!!! I remember when our son had Reactive Arthritis then got a dose of Campylobacter. Because Campylobacter is a notifiable disease he had to fill out a questionnaire for his continued income. Question after question he just had to say to me what do I say here, it doesn't make sense. A bit like the question do you feel,better , the same or worse - Of course I feel worse otherwise why would I be doing this.

 

Chin up lovely lady, stay away from the dialysis room, keep yourself in as good a place as you can. Carry on presuming you will be the exception to the rule.

 

We have just got a new inmate in our hospital room who is going on about what a hard time he has had and the reponse he has received is Join the Club Mate!!!

 

My neighbour has been here since 9 Feb, about as long as me, since he rolled his tractor and ended up underneath it. Now he has a bacterial infection in his chest, underneath the broken ribs, which is resisting treatment. That gives you pause to reflect on life.

 

Enough of the gossip, take care, love yourselves and your families.

 

Warm Hugs

 

JudyT

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Miocean, JudyT, and to all my other Scleroderma cyber friends ,

 

I don't know how you all do what you do....many days just putting one foot in front of the other. Some days only taking one step and other days 10 steps. The uncertainty of each day must be so frustrating emotionally. I may not respond to all posts but I do read most of them and I do keep you all in my daily thoughts.

 

Take care, Everyone.

Margaret

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Dearest mi, Judy and all the REST of my very Special Scleroderma Family,

 

We ARE unique...that we are. We ARE because we have a strong constitution, a strong built-in inner strength that allows us the "Blue Days" so that when we DO have our "Good Days" we appreciate them to the Nth Degree :emoticons-yes:

I have a "Flaw" in my character, in that I want to help make it all better...that's how I feel about all of You! I would give my EYE Teeth to be able to wave that Proverbial Magic Wand, Trust me, as I think most of us feel that way. BUT... then I get that reality smack up side the head and thank my Lucky Stars that we have each other, to sound off to, to VENT, just as we're doing now :thank-you: This is the BESTEST Place!!! We are able to come here and know that everyone here understands exactly where we are coming from! We aren't judged, yet we are loved....WARTS and ALL :emoticons-clap:


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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I didn't get out for the weekend after all, it won't be before Monday now. Probably just as well because I have just had to throw up and now it's dinner time and I don't feel like anything!!

 

Stay strong, kia kaha ladies.

 

Warm hugs and love

 

JudyT

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Well Judy...I'm sure sorry to hear that, not only about your later release, but also about the throwing up :(

 

Will definitely continue to send positive thoughts and lots of :emoticon-hug: s, for use at your disposal.

May you feel much MUCH better soon.


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Oh dear, Judy; that is not good news and I'm really sorry.

 

I do hope you feel better tomorrow and are able to go home on Monday as planned.

 

:emoticons-group-hug:

 

Best wishes,


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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To all my cyber family :emoticons-group-hug: A few words.....

When life deals us a hand thats difficult to hold

When fear and pain and loneliness scares your world

Lift your face to the stars and smile

Because someone just like you out there is scared and lonely too

When you feel theres no help or comfort to be found

my' dears just simply look around

Heres love and comfort in endless abounds!

 

We are all here for each other taking one day at a time under a big umbrella sheltering from the storm

 

Hugs

Lynn

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Dear miocean:

"I don't want to go back there."

You won't. All your posts are reflective and yet you are always moving and looking forward. We have all been in waiting rooms, labs and hospital rooms, and I have sad memories of the radiation waiting room while having treatment for breast cancer in '08. (Interestingly, the chemo doctor was much more upbeat.)

And we are all resilient men and women who are proactive and fight back against the disease.

Here's to more good labs and a happy kidney.

And warm hugs to all.


Kay Tee

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