Hospital 2010 Crohn’s Disease

Finally all the Crohn’s Disease tests that were stressing me out are over!  Whipee!

I was going through a LOT of back pain for a few days before the tests, but it was alright.  Even going all day and part of the day Friday without food was good.  I felt so sick to my stomach I didn’t even want to drink water lol.

 

my wonderful PSW Marlene

So my mom and grams took me in 9am.  I had my walker for after the tests, and I’m glad I did, but I walked right by the receptionist and forgot to book my next follow up appointment lol.

I was scared about getting the throat scope.  I wanted to be able to do it, but I was afraid it would get me really sick, to the point where I couldn’t get it done, but I did!  They had  a hard time getting the sedative to work on me.  They had to give me 4 doses, so I was more than aware for the lower scope.  I’ve never had a bad experience with it, but the pain I went through is unreal!  I really feel like the guy was a little off his game, bc even the G. I. that sits with the student and tells him what to do, said, “I don’t know why you’re banging off the wall so much, that’s why we use a camera.” LOL.  I never experience much pain usually if any, until they enter the smaller bowel, but this time I had horrible pain the whole way through, that I actually teared up.

So by the time we got to the throat scope and I was plenty medicated… I was nervous.  I didn’t want this guy acting like this with my throat too!  It didn’t help that the cord the camera is attached to, was way thicker than I thought lol.  The numbing spray worked fast, but you can still feel it very much so.  I kept automatically swallowing, which made me gag EVERY time lol.  I don’t know how I didn’t throw up, but I made it through!  It was bad gagging so much, but I’m more than happy with it bc I was able to get through it 🙂

We stopped off at my mom’s to get my mom’s stuff bc I had to have someone stay with me for 15 hours after.  I hung out with my sis, and ended up keeled over in my mom’s bed in even worse pain than before.  We stayed until Nick got home from school and he was rubbing my hand with his it was totally adorable 🙂  Whenever Amanda tells him my tummy is bothering me, he always leans over and kisses my stomach lol.

Amanda and I agree, that we don’t want Nick to know about my POTS.  It’s very hard to explain it to him without making the dear soul worry.  He knows about Crohn’s Disease, bc of how sick Amanda gets from it, so it’s something that is easier to have him understand.  It’s serious, but nothing to worry about.  So when my POTS affects me, we always say it’s my tummy problem like mama’s.  That way he knows not to jump on me, etc., but that he has nothing to worry about.  Hell I don’t get into it with my other nieces and nephews, and they’re all teenagers and the oldest in her 20’s.  I don’t want to unecessarily worry them when they’re so sensitive when it comes to family.

Mom and I came back here, and I got Subway, and she got Pizza Hut, and we just laid around all night and watched TV.  It was nice.  I thought it was silly to have my mom have to stay with me, but in the end I was glad she did!  She just left a couple hours ago to get ready for work.

Tonight, my sis Amanda wants to go to the movies.  Not sure what we’re seeing yet.  She wants to see the new Saw, but our certificates don’t cover 3D movies, so we might be going to see something else.

Tomorrow, I am going up to my mom’s to hand out candies, and take pictures of all of the kids on Halloween.  It will be so cute to see them all 🙂  And later this week, I head to the Gyno.  Will write more afterward.  I hope you all have a great Halloween!

Ash,

Can I start Panicking Now?????????

me and Jasper snoozing at mom's

I just got the call from the hospital.  They SAID I’d have a 3 week wait after the call.. nope I have 4 days.  I go in this Friday for 9am, scopes start at 9:30am!!!!!!!!!!!!!!!!!!!!!!!!!!!!  Sad thing is, I don’t get paid until Friday, so I’m going to have to borrow the money for the prep to take on Thursday!  OMG I hate this lol.  I’m literally shaking just thinking of having to get the damn things done!  Lower scope.. annoying bc the prep is so draining the day before, but I’m freaked out to get a scope shoved down my throat!!!  My sis said it’s so much easier out of the two, but I just don’t want to deal with this.

My mom understood how I was feeling, and said she’d take the day off so she can be the one to take me… and this short of notice, I don’t think she’ll be able to.  I hope she can, but I doubt she will. Oh Bloody hell thank GOD!  She literally just called me and she is pretty sure she can switch the shift.  That’s awesome.  And she’s going to get my prep for me and JELLO since it’s the only thing I can eat.

Well besides that freak out, I went to turn on my cell this morning after not using it in months, and the damn thing turns on but the screen is destroyed!  Not sure why, it hasn’t been banged around.  So I’m going to have to call Virgin Wireless and see if I can get it fixed, since I have about a year and a half left on the contract.  I have voice mail and text messages I can’t get at because of the screen lol.

Also, the Pauls family dinner will be coming up soon.  I’m supposed to bring cranberries or something… can’t remember lol or a jello and marshmallow salad which we have every year there… and I have no idea what all is in it bc I always thought it was gross lol.  So I’ll probably get the recipe from one of my aunts.  I honestly wasn’t planning on going this year.  I think I’ve only missed a family dinner once, and it was bc I had the flu when I was really young, but with me being SO run down, I just don’t want to deal with going out there.  Plus I know I’ll see my nieces and oldest nephew at my dad’s on Christmas Eve, since they’re the ones I would want to see most.  I guess I’ll decide before then.

Also, I have to go to the Gyno.  on the 4th of November.  It’s not too far from my place so that’s good.  I think I’m just getting a pelvic ultrasound done… can’t remember it’s been so long lol.  I don’t go to the Allergist until mid December, and then the only other tests I have coming up is the check up with the Cardiologist at the beginning to middle of November, and then with the G.I. team for my Crohn’s Disease sometime after the tests this Friday (AAAHHHH!!! lol)

Anyway, I’m going to head out and call my dentist about setting up a date to get my molds done for my mouth guard.. at some point! lol.

Ash,

Crohn’s Disease I Hate You lol

diagram of a human digestive system

Image via Wikipedia

We’ve always had a remarkable relationship.. I ate the right foods, you weren’t a bitch… what happened to this arrangement???  I think it’s over between you and me this truce… bring it!!!

Grams brought me in to my GI appointment.  Talked to a cute medical student about crap… literally lol.  And then got to see my good old Crohn’s Disease doctor Dr. Beyak.  He pushed and shoved on my stomach, liver area, intestines, you name it and no pain.  He check my thyroid, my eyes, down my mouth, my blood pressure and heart rate.

He doesn’t believe that it’s my crohn’s affecting my lower GI tract, which I totally agree, since all the pain, uncomfortableness, indigestion, seems to be coming from my stomach.  He doesn’t know if he thinks it’s even crohn’s in my stomach though either.  With my type of crohn’s it could be simply GERD another digestive disease, treated the same as crohn’s I believe, or it could be cancer.  They really have no idea why I’m sick.  So I’m going in for a lower scope even though I’m not due for one, but why not kill two birds with one stone?  Have a colonscopy and say that LOL.  Then they will go and have me bite on this plastic piece between my teeth and insert the camera through it, and I have to purposely swallow it down into my stomach.. and not gag… yeah right lol.  This would be hard to begin with, but when you have crazy nausea… the attending might be getting scrubs full of vomit as a morning treat lol.

I have had lower scopes done before.  The prep isn’t pleasant and makes me really sick for some reason lol but the test itself isn’t that bad at all.  I’ve never had an upper scope done, and even though it is nothing on the grand scale of tests, it still frightens me.  I’m not worried about complications, or anything like that, bc the GI team here is one of the best around, but I guess just bc I’ll feel like crap, gag, etc. I just hate having to have to get it done.  I hate complaining bc my poor sister goes through so much worse with her crohn’s on a daily basis, but I’ve been amazingly lucky compared to most, let alone her, so I’m not used to having to deal with these issues.

If nothing is diagnosed from there, then I will have to get a barium cat scan to get another look at the bowel, which I’ve had before.  That’s no biggy.  And then we go from there.  I will be hearing from them probably the beginning of next week since they’re now closed, and then my appointment will be about 3 weeks from then.

My Fibromyalgia was also confirmed with my GI today, and he figures since I get most of the pain by the end of the day, and not in the morning, that it’s only that, and not Rheumatoid Arthritis as well.  So that’s good at least.

Anyway, I’m feeling kinda down from it all even though it was expected to an extent, but these dumb appointments always wreak havoc on me afterward.  I’ll write more soon!

Ash,

There’s Snow Not Too Far From Here!

I found out it’s snowing in Barrie!  That is totally awesome lol.  I love the snow!

I have been feeling wiped the last few days.  I think it’s from all of that lack of sleep while having that cold so it kinda wore me out finally.  I am having a really weird crunching feeling in my eyes ears and head… like a head ache sort of.  Hard to explain, but the light makes it worse.

My Crohn’s Disease is doing so much better.  I got an emergency appointment with my G.I.’s for Friday at 1:30, so my Grams is going to take me in.  I really think it was only a set back or warning, not a relapse bc I’m not having the same symptoms, just think that I need to go back on my remission drug Azathioprine.  I don’t take it all the time, but I think my Postural Orthostatic Tachycardia Syndrome is flaring it up.  I do have nerve damage in my intestines so it’s bound to happen.

I started my Meal on Wheels program on Monday.  They bring food over for Monday, Wednesday, Thursday and Fridays.  I have to find a container like thing to have them leave it in for when I am not home.  Very odd lol, that or have someone be here to pick it up when I’m not home on Friday bc of my doctor’s appointment.

I’m going to be selling some of my furniture because of when I move.  I have way too much stuff.  My mom is going to take my bed (I’d rather use my futon) My heart rate goes crazy climbing into bed, and I’m huffing and puffing by the time I’m in there lol. I’m also going to sell two of my end tables and keep the one I got from my grandpa Bruce, and also my love seat.  I doubt I will have room for it and my couch in a new place, and I want to use my new chair!  Right now it’s my computer chair lol.

Tomorrow Marlene my Personal Support Worker comes, and on Thursday, my case manager is coming to set me up with the grab bar for the shower.  I may also be going with my Social Service Worker, Susan, to the YMCA to get my gym membership!  I’m really excited about it so I can go swimming again!

Anyway, I’m going to head out.  My sister is crazy sick with a cold… whoops! LOL.  I’m going to go have a nap and then make some fish for dinner if I’m well enough.

Take Care!

Ash,

PS Want to be in a POTS video?  Email Kayla your picture and how long you have suffered at:  auburngirl52791@aol.com

Wwwweeee Achoo!

Hey!  For some ungodly reason I’m watching Much Music‘s show where some crazy fan goes on a date with a celebrity.  This is a really bad show! Lol.

I’m on full on having a cold now whippee!  I don’t feel horrible though, but it doesn’t make trying to go to bed any easier when you can’t breathe right lol.  It’s all good though, bc I think the worst of it is finally over.  I only had one really bad day where I basically slept all day and then I was back to feeling like I was just having ridiculous allergy issues or something lol.

Got my wheel chair!  So dumb that this excites me, but it makes me feel so much less stressed in knowing I can go do day long things like going to the mall, or to a zoo, etc.  and not have to worry about cutting the trip for friends or family short bc I feel like crap and can’t go on anymore.

The lady who gave it to me knows my Grams, and she was so sweet!  It was her mom’s and unfortunately passed away after only using it twice.  She had a dog who was playing fetch with me, but if I pet her, she screamed bloody murder lol.  I found out afterward that the poor thing was beaten before, so I didn’t bug her unless she came to me after that.

I’m back on the antibiotics for the infection again, but this time around it’s giving me mad nausea!  I thought it was bc the first one I took, I took on an empty stomach, but nope lol.  I think it just hates me!  Only 8 1/2 more days to go blah lol.

I heard from Meals on Wheels yesterday, and they are going to start bringing me meals on Monday.  I’m excited!  I don’t know if they’re coming here already cooked, or if they’ll be frozen… but I am going with the vegetarian plan with chicken and fish.  I think I should like most of the stuff then, hopefully 🙂

Probably going to head up to my mom’s for the day in a few hours, and since like usual I only got a few hours of sleep, I’m going to have a quick nap before then so I’m not a zombie while I’m there lol.

Hope you’re all have a great weekend!

Ash,

Yay! Good News!

I went to bed last night so early bc I was wiped… but of course I didn’t sleep lol.  I think I got back to bed around 2am.  At around 10:30am (I cannot believe I slept that long!) all of a sudden I hear my mom’s voice calling me.. and my social service worker Susan’s voice lol.  She had been banging on my bedroom window, front door, called me… I didn’t hear a thing lol.  So she ran up to my mom’s and grabbed her to let her in lol.

I found out I got approved for my mouth guard from grinding me teeth like crazy!  I am setting up my appointment to hopefully go in next Thursday when my mom’s off.  I’m excited bc it’s horrible for your teeth!

I tried one of those Sleep Right Night Strips bc I got my free little samples in the mail.  My dad uses them and swears by them, so I wanted to.  My nose burnt so badly I had to take it off lol.  It did make it easier to breath, but the pain kept me awake lol.

Also in good news… I got approved for Meals on Wheels for two months!  So for at least two months, I’ll have dinner meals brought to me that are already prepared, and I just have to throw in the oven.  I’m so glad I don’t have to worry about starving!!!!!!!!!!!!

My mom brought me up to the bank today to deposit money for a bill.  She’s picking up my pills for me tomorrow for the infection so I’ll finally be able to start it.

Speaking of… I got the flu shot yesterday and apparently my sister has the flu!  We share EVERYTHING it seems like in the line of virus’s so at first I almost backed up from my mom lol, but then I remember I’m all good!!!  Not going to be going there though lol.

Marlene my personal support worker came this afternoon and I got to rest in bed for a bit.  She made me fried potatoes, and a nice dish of pasta with green peppers and celery mmmm.  Just watching the rest of LA Ink and then I’m headed for bed.  Face to Face front man Trevor is on the show!  LOVE THEM!

Now I’m reading Fly Away Home by Jennifer Weiner.  I am going to start it tomorrow.

Hope you’re having a good week! xo!

Ash,

Time to Relax

Hey!  Just got in from being out a little while ago with my Grams.  She seems sooo tired out lately, it’s starting to worry me more.

Last night, Nick was home from his other grandparent’s place, and they picked me up on the way from seeing Gramps at the nursing home.  I was going to go, but was feeling so run down, I thought screw it lol.  We had a lot of fun there, and got to visit tons.  I didn’t take any photos though.  I think everyone was tired out, and none of them wanted their pictures taken in pj bottoms lol.  I actually ate turkey too!  Not very much, but mmm.  Good stuff.  I went to bed last night between 10-11pm bc I was so tired, but then of course I woke right up and was up until about 3am lol. When my alarm clock went off at 7, I had to stumble around lol.

My Grams picked me up around 8:30, after dropping my aunt Kelly off at the train station.  I can hear the trains come in from my place 2 blocks away, so I went out shortly afterward to meet her.  We went back to mom’s and just visited and cuddled with my sister’s cat Jupiter (Jupy to me- he tried to eat my toast right out my hand, the pig!) and then we left around 11am to go to the doctor’s.

I got my referral to my Crohn’s disease specialists in Kingston, and another referral to the Access Center about getting more hours with a PSW (personal support worker).  I also have more infections again!  My doctor said it’s my immune system, so she gave me repeats to have of the antibiotic with all the crazy side effects, since it’s easier than coming in again and again for it.  GRRRR lol.  So annoying.  I didn’t bother to pick up the prescription today, bc I was just too damn tired and wanted to get home.  She also gave me a flu shot.  I have never had one until now, but after last year, I figured I’d take the chance on the shot making me feel sick since I get repeatedly sick anyway lol.  She warned me my arm would hurt, but no one has felt sick to their stomachs yet from having it this year, I said, “Trust me.. pain in my arm is nothing, I just don’t want to puke!” lol.

My Grams and I went to the library afterward, and I picked up a Candace Bushnell book and a Sophie Kinsella.  Now I’m home with my Zeusy, relaxing.  I’m feeling fine after the shot.. and yes with a sore arm lol.  A sore arm is the least of my worries in my opinion.

Thursday, I have to go to the bank to pay a bill, then I’m hoping to go to the place to get my Health Card renewed since it’ll be up in a little over a month.  Will probably get my med.s for the infection too.

Talk to yas all later when more goes on!

Take Care!

Ash,