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Ernie

By Ernie
in Dysautonomia Discussion

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Ernie Newbie

Ernie

Posted
Posted

Hi evreryone,

I finally got home today at lunch time after 3 months in the hospital. At one point I never thought I would leave because things were getting so bad with my body and finally things turned around and I started to go uphill.

Thank you so very much for all your support and prayers and phone calls. Thank you Morgan for posting for me. I had no access to the computer up to a week ago because I was bedridden and the only internet was on another floor and I could not access my account number. One day I escaped my room when I felt that I could make a round trip and I wrote Morgan to tell her what was happening. I could not contact anyone from my bed. I got caught by the nurse about 10 minutes after and they brought me back to my room.

At the end I was in a rehab facility and they were so afraid that I would faint (which I did everyday) that they also kept me supine in bed -bedridden and I could not progress. So I had to assume responsibility for my own injuries when I walked around or spend the rest of my life in bed in a nursing home. One day I told the doctor, who was telling me that I could kill myself or severely hurt myself during a fall ,that I would not accept a life in bed and that I am willing to risk waking around. Of course I walk around when I felt that I can manage it. So they gave me more freedom as they realized that I knew my body enough not to take irresponsible risk.

I still cannot wash myself without fainting but I can walk for 10 minutes! Go figure!

I had a fantastic nurse who took care of me a the whole month. She read about POTS and she learned a lot by observing my triggers and helping me to recuperate faster and she protectiected me. She was a real gem. Once in a while in your life you meet a special person that makes a big difference and she was one of them. Today she even crided when Iii left. She is a devoted nurse and she made my stay much easier. She gave me so much.

I am glad to be home. My dog is happy too! She remembers me!

I can't wait to make my own cooking.

I have missed you girls so much you can't start to imagine. When the nurse found me in the internet room I told her that I needed to talk with me peers, to talk with people who understand how I feel and know what life is with this disorder. So she did not reprimand me severely. It was worth going upstairs and being able to update you all. I read your answers every time I could get back on the computer and it kept me going on.

Love

Ernie

taylortotmom Newbie

taylortotmom

Posted
Posted

What great news to see you here on the board, Ernie! I hate that things have been so incredibly hard for you but it sounds like you had a wonderful nurse. Thank goodness! Take care of yourself-

Lots of hugs and love,

Carmen

nadine Newbie

nadine

Posted
Posted

so nice to see your post---- welcome back--

I am sure your dog was thrilled to see you!!! She was probably very confused while you were gone.

Take care and take it slow--- don't over extend yourself--

P SUDIK Newbie

P SUDIK

Posted
Posted

Ernie, just wanted to say hello and tell you how glad I am that you are home,and tell you that I hope you get better each day.Please take good care of yourself,Love P

april abbott Newbie

april abbott

Posted
Posted

I'm not one to post a lot on this board, but I would like to tell you I have kept up with several of your posts. I was so sorry to hear about your situation. I welcome you home and send many well wishes your way. This kind of news hits all of us hard here at dinet, even those you may not hear from much, because on some level we can all relate. I have been in some bad situations myself, and reading your post takes me back to that sad place. Keep up the determination, because only you can get yourself to a place where you can build strength and endurance. Keep pushing and never give up. Your post encourages me and many others because we all strive to have your willpower and courage.

dizzygirl Newbie

dizzygirl

Posted
Posted

HOORAY!!!!!!!!!!!!!! ERNIE!!!!!!!!!!!!!!!! :blink:

Im so so very happy to see you on the board again :) you've been very missed here..

also im so happy that you are now home in your own bed.. and im sure that you where just as happy to your doggie and your doggie was to see you :)

i cant even begin to imagine waht 3 months in the hospital must have been like for you.. oh my..im glad tht you are improving tho ernie that is great news..

do they know why you took such a turn for the worse? I know you'd been havinga hard time...

all in all glad your back dear

much love and hugs

linda

Poohbear Newbie

Poohbear

Posted
Posted

Yipppeee!!! Welcome Home! :blink: I'm glad you are finally home. I know it can take a long time to get back "into the grove" (even though our grove isn't fast speed or anything).

Please take good care of yourself and don't overdo it too quick. I look forward to catching up with you when you have more energy and feel up to it.

You have been missed SO much!!!

Rachel Newbie

Rachel

Posted
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Wow! It is so good to hear that you are home, Ernie!!!! Welcome home, and welcome back to the forum! We have certainly missed you.

Thank you for sharing some about your hospital stay. I'm so sorry you had to be there for three months. It is good to hear that you had a wonderful nurse, though. A caring nurse can make a huge difference.

I hope that things go well for you now that you're home. Hope you're able to get the treatment and care you need.

So glad to have you back!

Take care,

Rachel

Roselover Newbie

Roselover

Posted
Posted

Ernie!!!! I think that's the longest post I've seen you post LOL!!! Yay!!! So glad you are home... I know it doens't mean everything's fixed... but so relieved to know where you are and how you are... I worried for so long!

Keep us updated as you can!

((BIG HUG))

~Melanie

Ernie Newbie

Ernie

Posted
  • Author
Posted

Hi,

I got a gastro and was severely dehydrated so I went to the ER to get IVs. My gastro had been cured for a week except I was still week from it. The ER doctor put me in the same room as a lady who had a severe form and very contagious gastro enteristis. I got hers. So I was getting dehydrated from both "ends" now. I couldn't keep anything in. I was on IVs for 3 weeks with K+ in the IV and K+ supplements. I also had gravol. Both medication irritated my veins and after 2 days they had to change the IV to a different vein because the vein was burning. So after 3 weeks I had no more veins to use. When they had to do blood test the veins would explode so they put a PICC line.

The doctors did not know about POTS and NCS and they stopped some of my most important meds and gave me meds that made me worst (ie vasodilator) and that made me faint everytime I stood up because that's what happens when I am without meds so imagine with meds that makes me worst! I kept telling them that I needed my meds but "they knew better than me!!!!!!" So to avoid injuriy to myself and to them and the trouble of picking me up on the floor they put me on bedrest for the whole time.

was very obdient until the day they told me that I was going to be put in a nursing home because I was not improving. I tild them that they were making me sick with there meds and that I had some sort of a life before I came to the ER and that they had to rehabilitate me. Nobody wanted the responsability of letting me walk around. So I rebelled and I just disappeared from my room and went for a walk in the corridor at night. Then they gave me permission to walk with someone. It was nice on paper but the empllyees were always busy with the other patients.

So I rebelled again and I left my room and I went on another floor where nobody knew me. That's when I went on the internet. I had no choice if I wanted to go home. I had to take the risk and train on my own responsibility otherwise I was being sent in a nursing home yesterday. So I did what I had to do to be able to go home. Some patients are permitted to stay in the rehab center for a year but they knew nothing of my disorsder and I had a limited time and I had to hurry to be ready on time. I can't say that I was ready yesterday. I believe that if I had had 2 more weeks I would have been ready but I am OK with it.

It was so nice to sleep in my own bed. I woke up several time at night and I was wondering if I was dreaming that I was at home. There was nobody to wake me up at 6:00 a.m. to take my meds. What a break!

I got some new meds for pain. They believe I have endometriosis so I have a pain killer until I see the OBGYN. They also change my K+ because I have a stomach ulcer and the new one is not as damaging on the stomach as the old one.

Sophia3 Rookie

Sophia3

Posted
Posted

Gosh, Ernie, you have been through a lot and I am so glad you got out of the hospital to come home...sorry about the dehydration and I hope you feel stronger and improve more each day.

Thanks for the update...that had to take energy!

:blink:

Eli6596 Newbie

Eli6596

Posted
Posted

As someone else said, we all can really relate to each other. I remember dark days too, and it saddened me that you were so sick even though I have never seen you. I think it makes us appreciate everyday things after such a horrible sickness. It sounds like you were sent an angel in that nurse.

I was in the hospital for 3 months when I broke my pelvis in two places as an 18year old. I felt like I had been released from prison after I left the hospital. I remembered thinking that the air smelled so sweet. I wanted to kiss the grass! Probably no else besides us would understand that the physical and emotional difficulties from POTS are soooooo much harder to deal with than two broken bones! I bet you know what I mean.

I hope you can be patient with your body. That is always the hardest thing for me.

Welcome HOME,

Karyn

persephone Newbie

persephone

Posted
Posted (edited)

ERNIE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! IT' SO GOOD TO HAVE YOU BACK AGAIN!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! WE MISSED YOU!!!!!!!!!!!!!!!!!!!!

Edited by MightyMouse
fixed code errors
AJVDK Newbie

AJVDK

Posted
Posted

I havn't been around the last few weeks that much, I saw the post today! I am so gald to see you are back. I hope you keep getting better! Welcome back! :)

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