Give me strength!

God give me strength. I sometimes don't know how I deal with the daily things that live brings with it. Having POTs sometimes feels like a life sentence. I miss being able to do the normal everyday things that is I once could. Please remember today is a gift. I'm thankful for my children and my life but I do wish it could be a little bit more normal like everyone else.

My heart hurts today because its a self pity day.. again.

Long time no.. Yeah I'm a slacker!

I just realized how long it has been since I've posted in this blog. Mainly because I've been so focused on my other blog at http://iamnomartha.blogspot.com/ . Its my crafty blog. I wasn't always into crafts but as POTS took over and took pretty much all of my freedoms away, I found that I do have a somewhat crafty side.

Ok so it is now 2011. For some odd reason I keep typing 2001 instead. *shakes her head*. Not sure what to say other than I don't think the pacemaker is helping. As usual with POTS, I have a constant roller coaster of good and bad days. Except they tend to be weeks not days. My brain fog is really bad right now. Cognition is not my strong suite at the moment. I have an appt with Dr. Grubb in a few weeks.

I have to say I like the man but I don't like how often my visits are spaced. My PCP knows very little about POTS so seeing the one person who knows tons about it so few is a pain in my booty. I do know that I will have a long talk to him about what needs to be done. There has to be changes.

Still fighting for disability. The lovely state of Ohio was ever so nice as to reject my last appeal before they could even get the information about me having a pacemaker and why. So now we are fighting to get it put back in appeal status rather than hearing status. I'd love to kick Ohio really hard between the nuts (buckeye nuts?).


Ok something not POTS related. The kids are doing really good. Growing like crazy. Ian was diagnosed with an autism spectrum disorder but is doing amazing considering everything that should be delaying him. He's right on and above where he needs to be. Both boys got straight A's on their report card. So happy and proud of them.

I also do have to say as long as I ignore the issues associated with POTs, I'm very happy. Also if I ignore another issue. I've found a renewed since of enjoyment and happiness. Its very close to cloud 9. <3

I promise to try to update this a bit more. Also feel free to check out my other blog. I do tend to update it more often. :)

Video from the trip

Just a short lil video from the trip.  Nothing was recorded in the hospital as I wanted to respect the privacy of the people in it. 

 

While I was away I got something new

We all know how much POTs sucks.  In March I had an internal heart monitor put in.  I posted about it in a a previous blog entry.  Well it did its thing and showed that my heart stops a few times.  It was then recommended that I try this med that must be given to me via injections.  I hate needles.  I hate meds that require 2 to 3 times a day injections.   I manage to give MYSELF injections but the pain was just too much.  The med was called octreotide.  

Dr. Grubb was consulted right away about the pain and since we had little hope that I meds would help me anyways (I had gastric bypass surgery) we proceeded to go with a pacemaker.  I had said pacemaker put in on Tuesday.  I was sent home yesterday.  Words can’t explain the thoughts going through my mind right now.  I’m just praying that it helps.  I’m praying that someone else reads this blog and it helps them.   

This is now apart of me. http://www.eplabdigest.com/BIOTRONIK-Launches-Evia-Pacemaker-Series

 

I’ll post more later. 

<3 Krista

Where does time fly when you aren’t having fun?

 

Yeah it has been a while since I posted.  I know.  Sadly this past week we lost my husband’s grandmother.   This loss has made me do a lot of thinking and how I really need to at least get an updated will and make decisions on how I want my body to be treated after I’m gone.  Ok sorry to be depressing there for a moment. 

Let’s move onto something better.. I have an appt with Dr. Grubb tomorrow.  Apparently that 12000 dollar piece of equipment they put in has been sending data that he’s not happy with.  So I have an appt to see exactly what that is.  I’ll let you know when I know more.  Sadly due to the fact that my husband has been off for so long we won’t be staying in Toledo too long.   I really need a vacation.  Hey Disney!  Want to send a family of 4 to your resort for free? ;)  Great PR.  Mom has chronic illness.  You’d look like a saint! lol

Speaking of my children.  They are my world.  However,  they are on summer vacation.  It makes me miss “me” time.  Sure call me a bad mom but sometimes mom needs some peace and quiet.   Sadly while I was in the hospital a couple weeks ago I missed them so much that I convinced my doctor to let me go home so I could hear their wildness. 

I’m very proud of Hunter.  Today marks his last baseball game.  He’s stuck through it all season and this is his first season of playing baseball.  I’ve seen a big improvement.  Enough that I know with lots of help he’ll be pretty good in the next year or two.  Plus during his last day of school he was the ONLY kid in 4th grade to receive special certificates for his achievements.  His teacher told me she’s never seen a kid with so many goals and stick to each of them.  He is really gifted.  I wish we had an actual “gifted” school nearby but I’m thankful that Northwest has a gifted class for him. 

And onto my other sweetie.  Ian had a lot of problems reading at the beginning of his year.  This kid now picks up books and reads almost anything.  He reads words I had no clue he could.  He’s also not hard to get to read.  His brother hates to read.  Plus he’s still enjoying cub scouts and just got signed up for tag football.  I think he’ll do great!

So that’s all I’m going to post for now.  I am going to start posting more.  If anything about my craft projects in between the important stuff.  Crafts seriously save my sanity.  :)

Until next time, Krista

Technorati Tags: Children,POTS,Dysautonomia,internal Heart monitor,Columbus Ohio Zoo,death,family

Not your typical artist.

I’m always saying how with having a chronic illness, like POTS, EDS, or any other ones that might exist, just how important it is to have hobbies to help keep your mind off of it. 

I started getting back into scrapbooking.  Only thing that sucks is that I’ve had to buy all brand new stuff because I had pretty much cleared out my stash.  So I’m slowly rebuilding.   I wanted to post some of the things I’ve worked on lately.

Enjoy!

 

 

 

These two pictures are of a tag that I recently made to send to a friend.

 

 

This is a mini scrapbook that I made for my mother on Mother’s day. The first one is just the card that went with it.  :)

I made the red flower!

 

And this last picture is another tag that I made for another friend. 

 

Feel free to leave comments or email me anytime!

Thanks for stopping by,

Kris

It's been a few weeks eh?

I made a video of my weight loss journey. I thought I'd share it with you.

Enjoy,
Kris

Make an on-line slideshow at www.OneTrueMedia.com