End of the Week Madness

Hey I’m back to being alive woo hoo!

Peek A Boo!

I was feeling pretty crappy I suppose from the stress test.  Not a lot of muscle aches, just nausea and joint pain.  My grams brought by a heat wrap and back support thing that my gramps had but never used.  I have kind of like a mini heat pad, as well as my oatmeal bags.  The pad I have though, you can’t lean on, or else it heats up crazily.  So this one grams gave me will be good bc I can use it when sitting in a chair and lean right back into it without worrying I’m going to burn myself.

So the last couple days not a lot has happened.  I’ve been sleeping so much I’ve had no idea what day it is if it wasn’t for my computer having the date! lol.  I did get my family tree done.  Susan, my counselor, wanted me to write out my family, and mark which ones had mental illnesses, and I added ones that had autoimmune diseases and heart problems.  It looks like a total mess but I got it done lol.  It’s a cool idea, I liked doing it!

My grams also brought over this HUGE fan that she got.  It’s about the size of those old box fans we had when we were little (80’s) but it’s round shaped.  It throws air that’s for sure!  I have it aimed at me right now on low, half way across the room and it’s still blowing stuff on my desk all around lol.

Zeus helping with the family tree

Tomorrow Marlene comes in the morning, and I’m going to have her cooking up a storm.  I’ve had the biggest cravings for mashed potatoes and fried rice LOL and she does both soooo well 🙂  After she goes, my mom will be stopping in after Nick’s swimming lesson, and we’ll be going grocery shopping, getting cat food, heading out to the reserve, and paying for my $20 fresh food groceries for mid way through the month… oh and the bank lol.

Once I get home, I have about 3 loads of laundry to do, and then more once my clothes are dry (use a drying rack to save having to use the dryer) .  I haven’t been over to my mom’s to hang out with Nick or my sis in over a week, but I’ve been so out of it, and now that I’m not I have to use what energy I got to get every thing done around here.

HUGE fan lol

I’ve also been adding to this blog.  I’ve already added a section for blood pressure cuffs and heart rate watches, but I want to add another one for tilt table tests and stress tests, so people who haven’t done them, know what to expect.

Anyway, it’s 1o:30pm and I’ve only been up for 2 hours!!!  So I’m going to head out and try to sleep more so I won’t be so wiped tomorrow.

Hope you’re all doing well!  Especially my LOOP and Kyli! *big hugs* ladies!

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Day After Hell

Yesterday was soooo long lol.  Grams, mom and I got to the hospital for 9:30am which meant leaving home at 7:30am and I had been up since 1:30am!!!  I got the first round of blood work done, and then had to drink this thing that tasted like orange crush.  I thought, awesome, it doesn’t taste gross, and I haven’t had a drink in 12 hours so I’ll chug this… two little cups of this stuff took me almost 10 minutes to drink LOL.  It was so full of sugar I thought I was never going to make it through it.  They’re testing me for diabetes.  So two hours later of literally just sitting around and doing nothing, I got the next round of blood work done and I ambushed the cafeteria and chugged a bottle of water and had a turkey sandwich, which ended up having a long white hair in it *gags* lol.

Cuddle Time!

After two more hours of waiting around, I went up to the 2nd floor and had my stress test.  They girl who did it was great, and lot smaller than me, so there was no way I was going to pass out on her.  The full run of the treadmill is 25 minutes.  The only person to make it, was an ex army guy at the end of the rehabilitation program, and he only got to 22 minutes, so I knew I wasn’t going to lol.  I made 12 minutes.  I could have went a couple more minutes, but I didn’t want to faint so I stopped when I started getting really dizzy.  The highest my blood pressure went, was 167/80 and heart rate was only around 160bpm max… which I was shocked to hear bc just walking around the hospital, made my heart rate go up to 150bpm so it must have calmed down my the test.

We got home around 3pm and I was feeling well enough to go to my own place.  I ended up falling asleep watching tv and woke up at 1am! lol I must have been tired.  I fell back asleep around 3am and was starting to feel a bit sore… until I woke up this morning lol.  I was sooo sick to my stomach I could barely drink water.  I swore I was going to be sick, so I canceled the dietitian appointment.  Ended up in my favor bc my mom was supposed to get me at 9am and when I called at about ten to, she was still asleep lol.  I was also going to do some cooking with Susan but that obviously wasn’t going to happen lol.

Before I ate lunch I was shaking pretty bad, and decided to take out two huge, heavy bags of garbage… stupid lol.  Almost passed out on the way back in.  I’m feeling better now (around noon) but my joints are really hurting, like my hands, and back and shoulders and I’ve had a lot of chest pain.

Grams and Nick came by a little while ago and he was wearing his soccer medal he got to show me 🙂  Now just relaxing and watch Sex and the City.  I’m watching the one with Mr. Big and Aidan fighting, and then they become friends lol.

Alright, gonna head out.  I won’t be around the next couple days much, just to get stuff around here done and groceries, PSW and whatever else.  I’m still feeling better than I was even last week, but I’m still not quite back to normal crappy pots me lol.  Will write more after my appointments next week, when I get all my results and my tilt table test paper work.  Then I can double check for myself that I have H. POTS.

Take Care All!  *hugs*

Ash,

Stress Test Is Booked!

I got home from being at my mom’s visiting with my aunt Kelly who was down, to find out my dietitian was re booked for next week, and got an email from the cardiology rehab. center to tell me my stress test is THIS Tuesday! BLAH! LOL

You rock! You rule! lol

I was NOT expecting it to be so soon!  I have to go in for 9:30am on an empty stomach for blood work, then drink some weird thing and come back 2 hours later and get blood work again.  THEN  around 1:30 I go back to the hospital and get the stress test done.  The city is two hours away so I don’t know what they expect me to do in between lol.

I have to go back again on the 6th to meet with the cardiac rehab therapist and a cardiologist and go over a exercise regime for me.  I just found out that I should NOT be exercising until properly medicated, and I’m going to bring the paper where I read it with me and see what they say.  If it is my reg. cardiologist, I am also going to mention having to wait until March 2011 to see the Neurologist, and ask him to work with my family doctor if I can bring in a drug regime for him to do… if he has the balls to do it lol.

So my dietitian wanted to see me AFTER I see my family doctor, to see what my blood work said… and now she’s changed the appointment to BEFORE… so what the hell am I going for?  She’s going to bitch about eating too much salt, which I will argue with bc I have to for POTS and blah blah blah lol.  Kinda pointless, but whatever.

It was awesome getting to see my aunt Kelly 🙂 she has to go home tomorrow though, BOO!  I love her to death and it sucks bc she lives so far away.

I also saw my social worker today and she’s going to show me some good QUICK recipes for soups and pasta dishes she likes, which will be wikid!  I love cooking I just can’t be doing it all day!  She got recommended a really good cook book from her dietitian that she’s letting me borrow too so I can see what I may like.  I’m excited to try some of the stuff!

So tomorrow is going to be crazy… for a person who lives in bed or on the couch that is LOL.  Marlene comes in the morning, and I have to call her boss and reschedule last minute for all these appointments that happen to land on days when Marlene usually comes and get her August schedule.  Then I have to call both cardiology offices and confirm my stress test, and meet, etc. and call the dietitian to confirm I can make the new time.  Afterward, my grams will be picking me up to see my aunt Kelly again before she goes, and get the pictures she wants off the camera.

I also have to go to the library to pick up dun dun dun, The Silence of the Lambs LOL.  I’ve been talking way too much about all the movies, now I intend to read the book.  I keep trying to read It, but it’s SO LONG and makes me sleepy lol and I get bored and give up.

Then I have to go to the bank, and then to the dollar store and pick up some bristol board for some family tree thing I’m doing with my social worker.  Sounds odd, but I’ll talk more about it after I get into it more.  It’s actually pretty exciting!

Alright, gonna hit the sheets… just realized it’s 9:40pm LOL  But I’ve been up since 2am so I have an excuse :-p

Take Care All!

Ash,

Aggravating News!

I’m so frustrated right now.  Neurologists can kiss my ass!

pure muscle there people lol

I waited a year and a half to get my tilt table test and be diagnosed, which was okay bc the doctors were positive I had POTS so I was kinda being medicated (only got to see them twice).  Six months later, I finally see my Cardiologist for the first time since being diagnosed to find out when I asked general questions.. that he didn’t know anything about POTS at all except to try Midodrine then a Beta Blocker.  That’s it.  The first Cardiologist (they’re a team) put me on the Midodrine, then this guy refuses to give me anything else until I’m diagnosed even though the POTS specialist said to go ahead.  But this non POTS specialist swore I didn’t have it.  So after the tilt he gives me a beta blocker… metroprolol I think it was and yet again it worked for a while, then stopped working and then started making me really sick.  That was last November!

So I saw him again I think it was in April when he confessed to not knowing anything else about it, and says he wants to personally refer me to this specialist, who’s actually a Neurologist, bc he wanted to be able to check in on me in 6 months time, and if he did it through the hospital it would take six months before I got an appointment with the Neurologist.  Well he was wrong.  With his personal referral that got sent out back in April when I saw him (I called to make sure it got done, bc they forgot to set me up with the tilt table test making me wait 8 months longer than I should have) anyway, with his referral my appointment with the Neurologist isn’t until March 1, 2011!!!!!!!!!!!

I’m feeling very angry and discouraged.  There will have been only 2 medications tried in over 3 years.  Am I going to have to wait a year in between every appointment with this guy???  I know realistically I am going to have a long struggle find a medication or treatment that works due to my resistance and the fact that it takes all potsies forever, but I want to be on the ball about it!  I feel like I’m not even getting a chance, and it’s going to take me ten times longer.

For my potsie buds… outside of family doctors, how long do you wait for after making an appointment with them?  On average.  I know it takes a while, but 11 months?  I dread the thoughts of being house bound pretty much for another year at least.  And that’s just until I see him.  Makes me feel like they don’t care about my well being.

My mom’s coming over for dinner tonight, so that will be nice to have her to talk to.  Just feeling lost and forgotten about (medical field wise)  Sad.  Nice constant asthma attacks to boot. BOOO!

Ash,

Alright Catch Up Time

Hey 🙂

This morning I got a message from my dad drunk asking me to go to breakfast lol.

Zeus modelling with the new foot stool/ cubby

Him & Lois picked me up at 9 and we went to this place semi near me that I had never been to before.  It was cheap and delicious!  I decided since I NEVER eat normal breakfast meals because of POTS and Crohn’s, I would go all out today lol.  I got an egg, a couple slices of bacon, home fries and toast with strawberry jam. MMMmmm so good!  Been so long since I ate any of that crap lol.  Won’t be eating it again for a long time either, so it was nice 🙂

Lois (my step mom whom I love 🙂 ) works at my old high school as a janitor supervisor, and when kids lose their stuff and it goes to lost and found, apparently the school only keeps it for so long before they get rid of it, and some of it is nice stuff!  So my step mom always grabs us stuff she thinks we’ll like LOL.  She got me a new pair of running shoes last year (they never have my size! 9) and she got me another pair this week! woo hoo! hehe.

new chair i mentioned before

Last night, was the first night I actually slept in 2 weeks or more.  I would get a couple hours in the later morning, but then I’d be up again all night.   Last night, I finally crashed… for four hours LOL.  I was up around 4am, but seriously feel so much more rested!  Hopefully this keeps up!  I like and need my sleep!  I stopped taking my sleeping pills bc they weren’t working anyway, and was told I could have sleep apnea which when taking sleeping meds, could actually make me not sleep.  Either way I didn’t sleep lol.

Yesterday my mom turned 56.  Most people freak as they age no matter how old they are.  I actually don’t mind aging.  What bothers me, is seeing my parents age!  My dad is going to be 60 next year!  Now I know 60 isn’t old and he is in amazing shape, but 60 is too old for my dad to be for my liking lol.  I worry and I detest them getting older bc I want them around forever!  I’m such a moosh ball.

Anyway, I went up to my mom’s and we had an early celebration at lunch time since it was on a Friday and Nick would be going to his dad’s around dinner time.  Had cake… I now hate that cake LOL.  It was good though 🙂  Got to spend time with my little nephew, then my sis after he left, and didn’t feel too sick.  My heart rate stayed around 130 standing, 100 sitting which is great for me, and normal to high blood pressure, so yay! lol Sounds bad, but pots people know what I mean lol.

Showing off his assets lol

Also wikid news, I wont the contest on the 5 Awesome Potsies channel on YouTube! (link in the side bar) I realistically thought it would be impossible to win since I was usually too sick to do video replies, and had no one to get to join the channel, so I figured there was no way.  I especially thought so, when they announced the 2nd and 3rd place winners the day before, bc I knew there was no way in hell I’d get 1st… 🙂

So I got the option between one of three prizes.  A tote bag… thought no, I have a thousand already, a pillow… no my cat would take that over and I’d never get to use it, and a water bottle… water/pots/hydration/something I’d actually use.. went with that lol.  It has the 5 Awesome Potsies logo on it and a little saying underneath (forget what it says) so I’m excited to get it!  I’ll post a picture one I receive it from the ladies.

They’re all terribly adorable and sweet, and I think the world of them, so it was really nice to win something.  Kyli who does the Thursday videos, was one of the first people I found with pots when I was waiting to be diagnosed and wanted to learn more about it.  I learned so much from her and now the other 4 too about great tips, since living with pots, means more learning to manage from home then with the doctors.

Reply to Hillary's med.s - most of my daily's

I created another facebook account just for my potsie friends.  I know it’s hard listening about an illness someone doesn’t understand, but I also need to be able to spread info. to the others, and be able to vent more easily.  They are the ones that know first hand what I’m going through, and in turn, end up being a huge support system for me, so I made it so I can post these entries on there as well.  I think the only non pots person I have on it, is my mom.

So coming up, I’m going back to my family doctor about my test results, and I want to get a copy of the info. from my tilt table test, so I can have it for when researching online.  Also getting a referral to the sleep clinic, which happens to be right next door to her lol.  My social worker is going to take me.  She’s so sweet, she brought me by homemade cream of broccoli soup!

Mom & Nick before blowing out the candles!

Then I have my dietitian appointment to work with whatever my test results say.. I should think it will be the last time I see her.  I hope lol.  She’s been awesome about vitamins but food wise, I already know it all for Crohn’s and POTS she hasn’t a clue on of course.

Anyway, that’s it for now!  Just wanted to share the latest! *hugs to all*

Ash,

PS: I still haven’t done the V-Log… I just don’t want my scariness on video when I feel like crap! LOL

The Cove

Holy God have any of you seen the documentary, The Cove?  If you haven’t make sure you check it out.  Amazing and just plain crazy.

Zeus with his purse being smart in the heat

If my typing skills are off this morning, I apologize.  I took my inhaler about a half hour ago, and it gives me mad shakes so I may not notice every time I git the wrong key… which trust me is a lot lol.

I finished the book I mentioned in my previous post, The Summer We Read Gatsby.  I loved it!  A total chick book, I doubt any of you guys would like it, but I’d say it’s one of my favorite books 🙂

So the heat wave that sent the weather into the late 40’s has finally finished.  Hopefully we won’t get another one lol.  I sweat in regular Summer, I don’t need anymore help!  I thought as I had mentioned before that I had strep throat from it being so swollen and in pain.  I realize now it was dehydration like I suspected.  I drink about 3Litres of water a day bc of having pots (you get super dehydrated easily and if you don’t have enough salt in your system to compensate, you’ll just pee it all out) unfortunately when the weather was so high, I was drinking about 5Litres a day, but I was constantly sweating the worst I ever have and going pee every hour!  So I should’ve really gone to the hospital to get IV’s since I couldn’t get enough into me and it was starting to really effect me, but of course my stubborn ass didn’t go.

hiding from the heat

I just called my mom’s and got my grandma to wake my mom up since she asked me to last night.  She’s taking me to get blood work done, to the library and get Zeus’ food from the vets.  I’m wondering if she’s up since she falls back asleep SO easily.  You literally have to get her mad by constantly calling her or she’ll just go right back to sleep lol. It drives me insane.  I told her I am going to video tape her sleeping and post it on facebook for everyone to see LOL.  She has crazy snores too.  It freaks me out if I’m in the same room with her when she’s doing it lol.

So FIFA is over 😦 Now it really should be Winter!!!  I wasn’t going for Spain, but it was cool to see a country who’s never won the cup get it.

OMG my mom just called me awake!  *faints* LOL.

Alright, not a whole lot to say since everything happened last week lol.  This week, I just have my errands today, and then to go pick up my box of groceries on Thursday *mmmm fooooood*  I’ve also cut Gingerale off my list (all pop actually) bc it’s giving me gut rot too.  Better for me anyway, just going to have to find something new for nausea.  Still looking for those ginger candies to try.  And Big Brother is back!  What a ridiculous show!  But I love it! LOL.

Take Care All & Have A Good Week!

Ash,

PS Happy Birthday Julie!!! 🙂  *hugs*

This Weather Is Crazy!

NEVER been so excited for a thunder storm, like I am for the one that’s supposed to come tomorrow lol.  I just sit away from my fan for 2 seconds and I’m pouring sweat… gross lol.

I’ve got the damn carrot cravings again! LOL

So I have some heart news!  I got a call from the rehab therapy clinic where my cardiologist team is a couple hours away and she’s sending me some forms to fill out and then I go in for blood sugar tests… AND A STRESS TEST!  Like I said to the lovely Cindy when she had to do one, I’d rather get another tilt table test! Lol.  I’m not lazy, and used to use a treadmill all the time before, but omg.. there is NO WAY I’m going to run on that thing and NOT faint.  I’ll happily do it if it helps me even a little bit, but it is the one test I hoped they’d never want me to do lol.  But a cool thing about it, is afterward I’ll meet with the Cardiology team (they don’t know pots but oh well lol) and the rehab specialist to design a plan for me specifically.  I wish it was the Neurologist instead bc he is a specialist in pots… so just a little worried they will just be looking at it from a heart stand point, and not factor in the major things like standing, and cardio that can really make me sick.  Though still excited for it!

I saw Susan, my counselor yesterday.  She is going to be looking for an air conditioner for me, thank GOD!  I haven’t slept now the last 4 nights.  In the morning I’ll fall asleep for an hour or two then that’s it til the next day.  Sleeping pills aren’t helping, it’s gotta be the heat!  It’s affecting my asthma when I lay down, my blood pressure drops and I start burning up.

She also brought by the meal order form from Meals on Wheels.  If I go with not having it come cooked, I can afford it and there are lots I like… but sometimes, well a lot of times I can’t even cook that bc I’m afraid I’ll pass out while cooking, but the hot meals is like $60 more I think, so there’s no way I can swing that.  Still deciding 🙂

As well, I think I have strep throat… AGAIN! Boo!  So far I don’t think it’s making me feel sick or anything, it’s just that swollen and achy, hard time swallowing part.  I’m going to leave it for a couple more days and if it’s still around then I’ll get it checked out.

My mom was going to drive me to the doctors to get the order forms for the blood work, etc. tests I have to do here in Belleville but I think today I won’t be doing a whole lot.  She’s going to pick it up for me and then hopefully tomorrow I can go get it all done.  Depends on if I can get out to see my dad, but I doubt I will.

I am also going to be going to a sleep clinic finally!

Well now that I’m pouring buckets, I’m going to go try to get my 1 hour sleep for the day lol.  Hope you’re all doing well 🙂 *hugs*

Ash,