Adrenalin Works If You Work It!

The King’s Speech Raises Awareness of Language...

 

Had to go to the dentist today bc of the two fillings that fell out.  I just got the damn things filled at the beginning of this year!  Hopefully they stay put for a while!  My appointment went well.  Any other POTSy’s find that the freezing makes them jumpy?  My heart rate goes nuts when I get it… reminds me of taking acid in high school lol.  My SSW Susan stopped by too to try to scare me while in the dentist chair! LOL Thankfully I was walking out as she was coming in!

I got home, and thought I’d better rest and try to get my heart rate under control, but my heart was so wired for sound I couldn’t sleep, so I did a bunch of packing and cooking instead!  I have most of my stuff packed, but it is getting down to the wire, and I need to use what energy I get to pack when I can!

My mouth, now over 6 hours later… is still frozen!!!  Not badly and it’s pretty much gone now, but holy hell!  And it’s weird, bc I’ve always had less problems with the left side of my mouth, but if they do ANY kind of work on that side, I swell right up and look like a stroke victim… not cute!  I’m glad  give my family a good laugh with it though! lol.

I went to my dad’s this past weekend and got to see my uncle Howard, Patty, and their one dog Killer (a tea cup Chiwawa) LOL  she’s so ridiculously tiny I was scared I’d break her, but she is too adorable and cute and loved when she finally decided I was deemed cuddle worthy 🙂 I also got to see my cousin Joey and Lisa, and some other family friends.  I got my dad the book, The King’s Speech, since he loved the movie so much.  It goes into more depth of both the men’s lives, and has really cool old photos and letters that they sent one another.

I won’t be writing again, until after the move on Tuesday… that is “supposedly” when Cogeco is coming to set up my phone and internet too but we all know how well that turned out last time lol.  Then I’ll be seeing my dietitian, my PSW’s boss, and my OT worker as well.  It’s going to be pretty crazy with appointments and trying to get unpacked as well as trying to quit smoking!  Yes that’s right… my quit date is for the day I move.  I hope to hell I don’t kill anyone! 🙂

Alright, was just doing a quick check in to let everyone know I’m alive, just busy, and I’ll hopefully be writing more.. and more interesting things as well soon lol.

Ash,

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Inflammation & POTS

What I have to write makes me so happy bc it could possibly mean a change in my future health… for the better.  When you live with chronic illnesses, you have mini plans, mini goals, but I’ve stopped looking far into the future bc who knows what’s going to be an option then?  This may all change for me soon.

I went to my GI appointment to see them after having my Crohn’s Disease flare, and after re explaining to another GI about that band of tight pain I was having (made me feel like someone was squeezing trying to break my ribs) he wants me to get a small bowel x-ray done.  Which is what the GI surgeon wanted done at Napanee Hospital, but Belleville Hospital didn’t do, then the GI’s wanted it done when I was admitted into Kingston but they ended up only taking a regular x-ray, which only took basic shots.  So I am actually having the test done now bc he thinks there is something going on between where my stomach ends and the bowels begin.  He didn’t put me on my remission drug.  I’ll be back in a month with the test results by then to see what will be done.

THEN I went to my Cardiologist appointment, whom I’m happy to say had an intern with him learning about Postural Orthostatic Tachycardia Syndrome.  So I brought with me the discharge sheet from when I left the hospital after my flare so he could be caught up on the crohn’s happenings, and he thinks that after talking with some colleagues about my case, and he is positive now bc my blood pressure went back to normal when my crohn’s calmed down after the flare, that it’s the inflammation from my crohn’s causing my pots.  He’s not 100% sure of course until we get it under control, but he thinks that this and the inflammation (which makes your cholesterol higher too by the way) is the reason why my pots came out in the first place.  (pots has become disabling since my first yr after being diagnosed with crohn’s).  Inflammation plays a major roll with your heart, and I was reading that in a book about controlling your cholesterol, but never put two and two together, except to think my crohn’s may worsen my chances of lowering it back to normal, when in reality it’s probably the reason it’s high to begin with.  So basically overall, if his assumptions are correct, and I don’t want to get my hopes up, my pots could technically disappear altogether, or at the very least, become significantly less of an issue for me.  I might actually be able to have a job, a future… a quality of life.  Something I had basically given up any major chance on happening.  To think the one chronic illness I have that could be making me so sick… is the one I never thought twice of this entire time bc I never realized what an impact it could be having on the rest of my body.  Craziness

I had an OT assessment done this week as well.  The girl seemed really cool and really understood pots from how I told her it affected me personally, and she was really cool and wanting to help me get help for around the apartment as best as she can.  She’s going to come by at the beginning of next month and take a look at the new place, and see what all she could do there.  I’m just waiting to hear back from the housing coordinator if it’s cool with the landlords if I install some grab bars, etc.

Anyway, wanted to share the great news with everyone.  I’m really pumped about getting the small bowel x-ray and seeing what it has to say and then continue treatment from there.  It’s nice to have a bit of hope again 🙂

Ash,

Dietitian

adult Maine Coon female in blue-cream patched ...

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Thankfully the dietitian that came to the house yesterday was NOT the one from before, that I went and saw in the hospital here last year.  I really like this one!  She’s really passionate which is always nice to see from someone in their job, and it was cool that she could come here and look right in my cupboards and see what I am actually eating!

So I didn’t learn anything new about crohn’s and the diet for it.  I wasn’t overally surprised there though.  She was good about helping me find more salty foods and fiber foods, and also foods that are great alternatives for people with high cholesterol.  She said though, that with everything I had, I am doing everything right.  Which is good bc who likes changing up what they already have, but that means my high cholesterol must be hereditary.  She said it would make no sense otherwise.  What my plan is then, is to get it checked AGAIN with blood work since it’s been almost a year since it was last checked, then if it is still high, have the dietitian write me a note or something to bring with me to the Cardiologist saying I’m doing everything right on my end and it’s still high.  And bring the blood work results with me.  I know my bad cholesterol is WAY TOO HIGH, but my good cholesterol is too, and I know that can kind of balance each other out.  But I still think they need to be within a normal range.  I feel like if it isn’t to do with POTS and the heart, my Cardiologist wants nothing to do with it.  Maybe not, but I don’t want to be 28 and at a risk for a heart attack either.

Sunday, mom, Nick and I went to the cat show here!  It was obviously nothing like the big cat shows on tv bc it’s a small town, but it was cute!  It was more fun just walking around and looking at all the different breeds.  Nick was able to pet a few of them too, and it was totally adorable watching him be so gentle with them.  I love cats! hehe.  I think my favorite was the Maine Coon or the Scottish Folds.  Then we went and had lunch at Dairy Queen.  It was a fun afternoon 🙂

Anyways, my PSW is coming early  this week, and coming this morning, instead of later in the week, so I’m going to go have my breakfast before she gets here.  Hope you’re all doing well!

*hugs*

Ash,

PS  Did you remember June 6th (yesterday) was Invisible Illness Awareness Day?

Crohn’s Disease Update

I’m feeling much better now and actually liking this weather!  Err kinda lol.  I detest humidity… horrible stuff, but when it’s not humid out, the heat isn’t bothering me like it did last year.  Mind you, this is only the beginning of June!  But I’m wearing SPF 60 and still burning!  Maybe bc I have to take 1000 mg or IU’s or whatever of vitamin D.

Well I’m slowly packing for my move.  Last time… a whole couple months ago lol I had more problems with my Crohn’s Disease, than I did with POTS which surprised me.  So this time, I am being really careful since I obviously just had a flare.  Doing it when I’m well enough, and stopping even before I begin to feel too horrible.  I just need to be able to do something with this move, and even though I will have tons of help to even pack if I need, I still can’t stand the thoughts of not doing SOMETHING when I can.

I got a call from the Access Center, and Monday a dietitian is coming here and helping me figure out what would work best for me crohn’s and pots wise.  I know a lot of it is just common sense mixed in with a lot of salt for pots, but whatever I can learn why not?  Maybe she can give me some tips on cholesterol, and heart burn too.  We’ll see… not sure if it’s the same woman I went to the hospital last year to see (aka waste of my time lol)

Next Friday, I go to Kingston, and see my G.I.’s about how I am doing since the flare.  I am better, but still not up to par.  Or at least not in comparison to how I was after my last flare… mind you I was so much more healthy then.  I will be finding out what my medicine is going to be for when my Prednisone is finally done in July.

After I get out of there… and hopefully in decent time too, I go down and see my Cardiologist for the first time in almost 6 months!  Grrr lol.  This whole Bisoprolol medication that doesn’t work crap is finally on my last nerve.  I am going to ask him to switch.  Enough is enough!  I also want to talk to him about other symptoms besides just the heart rate and blood pressure.  I know that certainly worsens symptoms easily, but what about all the other stuff like heat intolerance, shakes, dizziness, etc.  See what he suggests I do, or whom I should go see.

On Wed. I think it was, I went with Grams, Amanda and Nick to his first soccer game.  Last year was adorable bc they just played around and learned the basics, but this year he is actually playing.  It was fun to watch them!  I hope I get to go to more games this year than last!

Tomorrow, my mom’s taking me out to get my groceries.  I have just finished reading Bethenny Frankle’s cook book.  I absolutely love it.  It’s nothing fancy, but teaches you the basic need to knows about experimenting yourself in the kitchen.  I was never taught anything but the basics, so I know nothing about herbs and spices, etc.  And I love this book bc it shows you all that, with just regular, yummy foods, you already have in your fridge.  Can’t wait to start experimenting more!

Anyway, going to head out, I couldn’t sleep and decided to update you all to let you know everything is going steady and good right now 🙂 I hope you’re all doing well too despite all the crazy back and fourth weather a lot of you are having!  Will write more next week after my appointments.

Ash,