I Can Move! Yes!

So happy bc I am finally getting used to being on the Prednisone.  I still get bad insomnia, and bad nights of feeling terrible, but at least now, I am able to slowly take care of myself more and more!  I actually made pasta last night and then the dishes!  Wahoo! lol.

I went to the doctors, and she sent a referral to the Acess Center where nurses come into your home to help you out.  She was thinking IV help, which now that I am getting water into me more, I may not need.  Though it’s getting warmer, and maybe having that option isn’t such a bad idea with POTS since it was so bad last year.  She also signed a note for me, saying that having an air conditioner would benefit my health, so disability will pay for me to be able to buy one, and then the seasonal charge for the landlord.  That is going to be a massive help!

I’m still bruised everywhere!  My dad said it looks like I have a tattoo on my forearm from the one needle bursting a vein.  Not a sexy tattoo LOL.  So I’ve been trying despite the heat, to wear long sleeve shirts when I have to go out in public!

I’m trying to drink a coffee right now… it’s disgusting.  Not as gross as it was, but I seriously cannot believe I drink this crap lol.  Probably better to just stop now.  It’s weird, whenever I get really sick, I always throw away bad food / drink habits, like pepsi, but then I pick up another… wonder what it will be this time??? lol.

So I went with the housing co-ordinator on Thursday, to check out the apartment they are redesiging.  It used to be rented by a person in a wheel chair, so the owners are putting in all new kitchen and bathroom cabinetry, it’s repainted, new carpet is going in the living room.  There are two sinks in the bathroom.  One is for washing your hair, which would be kind of nice, and a big tub!  There is also a little room to itself that would be perfect for a computer room or spare for company.  There are 3 big decks, and two of them are my own private, and tons of windows, stained glass in some of them.  Very charming, and spacious, but still not too big for me.  I asked to have a day to think about it.  Weighing the pros and cons of living here.  This is an amazing little tiny apartment, especially for someone who is sick, but I am sick of all the stress with the land lord and always being watched by my nieghbors.  I moved out on my own ten years ago, I don’t need to be looked after.  I’m here to rest, and have my own spot to myself, and not be badgered every time I open my curtains.  So I decided in the end to take the place.  I literally walk out the door, and the bus is right there on the corner.  There’s a day care and another tennant on either side of me, so nights won’t be noisy.  The children don’t bother me at all being outside and playing.  If anything, it’s a sweet sound.  The housing company will be doing the entire move for me again (I don’t know what I’d do without these people!) and all I have to do is move from one to the other with Zeus.  I am slowly going through my crap again though getting rid of stuff I don’t need.  I should be moving around the 15th, or before if the place is ready.

Just wanted to give a big thanx to Julie, Justin and Frankie for being such great friends these past couple weeks with me being an emotional blob lol.  It helps to know I’m not alone in the fight, and that we’re all going to be kicking ass soon again!  Just takes time! *big hugs*

Alright, going to head out and attempt to clean up the mess I started in the living room.

Ash,

Prednisone Nights

All this week has been very emotional for me.  Feeling like a constant burden on my family.  They’ve done nothing to make me feel this way, but I can’t help feeling useless some days.  Where am I supposed to go with a life like this?  I feel like I strive to live and wonder why.  What’s my purpose?

My Gramps asked my grandma the same thing this week.  He lives in a nursing home and doesn’t even know where he is most of the time.  He stays in bed, needs to be bathed, etc.  What kind of life is that?  Obviously I selfishly want my grandpa to always be around, but I know in a small way how he’s feeling.  It feels like there’s no point to any of it.  To live a life, suffering, relying on others.  Period. 

I go to my family doctor later this morning, and then my dad and Lois are coming up to visit me because I have been so down.  Thursday, I am going to look at a place with the housing co-ordinator and then Lilian my PSW is coming.  I still have a lot of things to catch up on, like getting the tooth I broke fixed coming home from Belleville General Hospital, but right now it’s just not in me emotionally or physically.

Susan came by today, my social service worker, and talked to me a lot about how I have been feeling.  She thinks I need to start getting nurses in here daily, and get IV’s of potassium water, to stay hydrated since I’m having a hard time keeping anything into me.  She also wants me to talk to my GP tomorrow about going to a pain management doctor. 

I spend all day long sick and tired.  I used to love when night time would come, bc it would mean I’d have a few hours of not having to be concious to the fact I feel so terrible, but these damn pills are keeping me up all night regretting any food I ate during the day. 

Besides that, I’m doing okay.  Just shakey on my feet, and just waiting as each day goes by to start feeling better bit by bit.  I got back to my crohn’s disease doctors, and the cardiologist on the tenth.  Hopefully I will feel better for the drive by then.

Hope you’re all doing well!

Ash,

I’m Home :)

I have had an exhausting few weeks!  Monday I went into Kingston hospital where my G. I. specialists for my Crohn’s Disease are.  I was admitted and drugged back up on morphine.  I was getting sick everywhere in the hospital and that’s when they realized maybe they should get on the ball with this!

By the next morning, all the major tests were done, and I was put on an IV for Gravol, sodium, some opium type pain reliever, and Prednisone.  Thank God!  I was in so much pain, could barely move from one laying position to the next without throwing up. 

By the end of the next day, I was back on smooshy meals instead of just juice and Jello.  I was up walking around the inside and out of the hospital… have some color in me now too lol, well I thought so anyway, my family said I looked grey! 

Basically I did my normal little miraculous bounce back I do with illnesses, and by Friday afternoon I was sent home.  I got home to quite the mess and wore myself right out and became sicker than a dog again.  I’m really worried living on my own isn’t going to be as easy as I thought.  I was doing a LOT for myself in the hospital, but now I’m not getting fluids, no pain medicine, so everything bad I do to my body I feel.  Getting up to get a glass of water takes most my strength. 

Taking the Prednisone at home… and I’m talking 12 tablets of this crap on a stomach that’s already wanting to come out onto the carpet, is really hard.  Swallowing anything is nauseating, let alone the worst tasting medicine alive 12 times over.  I had to take a break after them before I could take the rest of my med.s.

I’m bruised all over like a junkie and I hate it bc they’s in spots that are impossible to hide.  My POTS has been really good considering, but I’m vey dizzy and find it hard to sit up long.  I have no heat tolerance at all, and waking up in a bucket of sweat EVERY time you nap sucks. 

The reason my flare wasn’t shown in the colonscopy, was bc it was located in my Ilium, which is easily seen through a CT Scan and ultra sound. 

Sorry about the bummy entry.  I’m really happy to be home, just not feeling good yet, and I don’t know how I’m going to do this all alone.  Just wanted to keep you all updated.

Ash,

Admitted Into Hospital

This will be a quick post just to update you all.  I never heard from any of the doctors about me getting the test done to see if I had a partial blockage or not.  The hospital lost the paper work!

Thursday night, my Grams was staying with me, and I got even worse, so I ended up having to go to the emergency room here in Belleville.  They got me in pretty quickly and got me on Gravol, fluids, and then Morphine.  I had never been on anything like that before, but it didn’t effect me badly thank god.

All through the night and the next morning I was poked and proded and different tests were done to find out I don’t have a blockage, but just a relapse.  Instead of giving me my Crohn’s Disease medicine, they only gave my Oxycodon to take for the pain until I could get ahold of my G. I. specialists in Kingston.  Sucky part is, is I am going all weekend still just as sick.  Yes, it’s better on the pain med.s than without, but I’m not doing well at all.  I can’t eat or barely get water into me without going into huge pains, then really terrible nausea.  Last night, I almost called my family to take me to the ER again.

My pain meds run out tomorrow early morning, so I hope to God my G.I.’s are willing to just call in my meds to the pharmacy here, or I will be ending up back in the ER.

Will let you all know more when I am able to.

Take Care

Ash,

Small Bowel Stricture

Well I’ve been mentioning on here about having the stomach pain.  The other night, I had such bad pain I thought either a heart attack or my appendix was going to burst.

The next day I was so exhausted I slept for 12 hours!  I even slept that night again, but kept waking up to sharp pains in my stomach. 

Yesterday, my social service worker who is also a nurse came by to check on me.  We share the same family doctor, so she stopped by to make me an appointment.  Kathy, the secretary, also has Crohn’s Disease.  She suggested I better go to the hospital. 

So my Grams took me in, and a G I Surgen came down from Kingston to see me.  He is pretty sure I have a small bowel stricture.  I got booked right then to see the G I team in Belleville to get a small bowel x-ray done.  You drink this gross stuff that makes me throw up, and then you get x-ray pictures of it going into the small intestine to watch for a blockage.  If this is for sure what it is, then I have to go in for surgery to get it fixed.

He told me to pick up, Ovol, a baby gas pain reliever that you take in drops.  It is not helping with the pain at all.  I’ve tried, but haven’t been able to eat in a few days, can’t even stomach coffee.  Only water.  I can’t move around and do much bc I end up on the floor in pain almost throwing up.  I just have to deal with it until I find out for sure this is what’s happening, then wait for the surgery.  I’m in so much pain, I feel like another day of this is impossible.

Anyway, I won’t be around until this is fixed bc I just can’t handle not being on the couch. 

Ash,

In a Bit of a Pickle

I’ve been having nausea worse than usual at night.  A few nights ago, I decided to check my blood pressure (haven’t in a while bc it’s been nice and stable) now I have crazy low blood pressure and brachycardia!  It’s really annoying bc I’m used to having high blood pressure if any problems at all and an extremely high heart rate.  I’m so much more dizzy and my breathing is terrible.

Obviously now that Spring and beautiful weather is here, I am opening my windows!  It works great for the hot flashes from Postural Orthostatic Tachycardia Syndrome, and I like clean, fresh air coming in my place!  I got a call from the guy who deals with the tenants and he said the landlord called him, and wanted to know why my windows were open all the time… What?  It’s Spring…. of course my windows are open during the day time!  It’s beautiful outside!  What I’d like to know is how she knows it’s open all the time.  I think there is a gossiper in the building who likes to talk a little too much. 

Not only that, but our housing coordinator was just here this past Wed. to check the fire alarms and I got a piece of paper in my mail box yesterday saying the landlord is coming this Thursday to check them…  She’s been trying to find ways to complain about me, even though I’ve given her no reason to, so I figure she wants to see the place for herself.  All she has to do is knock on the door and inroduce herself, and I would be happy to invite her in.  This woman has a real issue with me and I don’t know why.  We’ve never met, I’ve never caused problems, I’m clean, my apartment is clean, I’m quiet, and so is my cat… I’m probably the better of the tenants in this house, so why she is going after me, I don’t get it.  The coordinator wants to now show me another house with an apartment… I think he’s sick of having to deal with her bickering about me all the time. 

As a nice added stress, my uncle Larry passed away the other night.  He’s been sick for a while (not the one who had a heart attack) and finally passed.  He was in a lot of pain trying to breathe.  I feel so terrible for my aunt Reta and Kayla my cousin bc they are so heart broken without him, but they’re doing good considering.  My dad is also very upset bc he was so close with him.  It’s very sad.

Amanda, mom, grams and I went to the wake and stood up in the lineup with dad and Lois.  It was nice to see the fam. since I was sick with bronchitis at the Christmas dinner, but just sad circumstances obviously.  Today is the funeral.

Today is the M & M’s Meat Shop, Crohn’s and Colitis yearly BBQ.  It’s only a few bucks and you usually get, a hot dog or hamburger, chips and a drink.  Last year, they had a rock climbing wall too.  You can also go in the store, and purchase a star at the register.  I’d appreciate any Canadians reading this, to go today!  It’s at every location across the country.

Anyway, going to jump in the shower after I have a coffee… better close my window again before my nieghbor tells my landlord! LOL jk.

Take Care!

Ash,

PS Happy Mother’s Day to all the mama’s out there!!! *hugs*