interstitalcystitis

Hey, everyone. I hope you’re all okay and staying stage during this crazy pandemic. I was hoping I could get some advice?

Since August I’ve been having problems with fluid retention in my legs. They get very swollen and very painful. They usually stay like that for a week or two, then it completely disappears... And comes back some weeks later. This has happened three times now (currently experiencing the third episode as I’m writing this). The last time it happened, my doctor arranged for me to have some blood tests to check for fluid around my heart. The result came back with only a little, so it’s a low rated risk of heart failure.

But that same doctor said that if it happened again she would likely put me on water tablets, like furosemide.

But... I already pee so so much. During the day it’s nearly once every hour and during the night I have been known to get up THIRTEEN times! Which is crazy all by it’s self. The way that water tablets work is that it makes the fluid in your legs get peed out, instead of just sitting in the limb. So, naturally, water tablets make you pee A LOT.

I don’t know if I’ll be able to cope with it. It’s hard enough now, having to pee all the time and then worry every time I leave the house in case I end up not being close enough to a bathroom...

What do you think I should do? I wear compression stockings and I do leg exercises and massage them as best as I can.

Any advice or tips would be greatly appreciated. Stay safe, my lovelies.

#chronicillnesswarrior #Chronicpainwarrior #POTS #EDS #NAFLD #BPD #interstitalcystitis #Diabetes #FluidRetention #help #Advice #legpain #staysafe

Hello! As the title says, I am looking for dating advice.

My last relationship ended in June of 2016 and that break up has psychologically scarred me. In February 2016 my health started to feline very quickly - I wasn’t able to work because of it and that nearly broke me - I had no choice but to resign. I had my dream job and I hoped and prayed I would get better... But it soon became apparent that I would likely never be able to go back to work...

Then on our anniversary (30th June 2016) my fiancé took me out to see a movie I’d been dying to see and then he took me to a pub for a nice big steak. I was so happy. We went back to his place and then at 2am when we were cuddling he turned to look at me and said; “I can’t be with you anymore. You are broken and useless and you’ll never be anything else.” It broke me... I still haven’t fully recovered from the enormous wound that was caused by his words...

I’ve started to use Plenty of Fish (POF) to look for a girlfriend but I’m a little conflicted. My disabilities are mostly invisible so I don’t know how or when to bring up my health issues.

In the past I’ve told people pretty much straight away that I have some debilitating health issues but I’ve always gotten really awful replies... One girl said that I was trying to trap someone in a relationship... Amd another girl said there is no point in me looking for love since I’ll probably die on the table during my liver transplant...

Should I wait and get to know them first and THEN tell them about it? I wish I was better at this...

Thank you in advance!

#chronicillnesswarrior #POTS #EDS #NAFLD #BPD #GORD / #GERD #Diabetes #interstitalcystitis #Dating #DatingAdvice #help

A world tinted pink it must be nice, everyday for me is a roll of the dice
You see a smile and don't look for more, it's masking a truth deep at its core
Some pain is fixed with medication and time, in my little world its part of the climb
I try to tell you but you just don't see, what's truly going on inside of me
I want to make plans and follow through, I always end up disappointing you
Living like this can be so rough, no matter what it’s never enough
If you understood how it felt, having no control over the cards your dealt
Given the chance would you count my tears, treatment failed are the worse words to hear
I pick up the pieces and try something new, anger and fear this is your cue
Your dreams and plans go out the door, until the day they find a cure

#ChronicIllness #Fibromyalgia #interstitalcystitis #Gastroparesis #InvisibleIllness #Dysautonomia #MightyPoets