...Belated Update...

Isn't the picture fantastic?? 

What makes it even more amazing is that it was completely unplanned. Otto & I both made those faces at the last second. Ha. 

Who couldn't love that face?!

Lately, I have been yo-yoing back and forth between doing really well and having a hard time getting out of bed or feeling so sick that I can't sleep at all. It's an interesting balance that is hard to really believe unless you experience it.

I'll share the good news first...

The Saturday before last I went snowboarding!! It was so much fun. Otto and I picked up my good friend (and former roommate) Tiffany and her boyfriend Scott (also known as +1 and boyfriend 2). We drove up to Wisconsin and went to Cascade. It was a really long day, Otto and I left the house at 6:30 A.M. and got back home around 10:30 P.M.

We have so much fun with Tiff & Scott. Also, I got to ride my new board that Otto got me for my birthday. It was fantastic. To add another twist to an already fun-filled adventure, I ran into a good friend before I even got to warm on on the bunny slope!!

Tiff, Scott, & Otto are all more experienced then I am when it comes to snowboarding, so I told them to go do some runs while I got the feel of my new board on the bunny hill. I was making some adjustments to my attire when I heard someone call my name. It turned out to be Justin Kuryliw! 

Justin and I have been friends since junior high. Well, we have know each other since junior high. He annoyed me incessantly back then. Somewhere along the line we became good friends.

Justin and I have been on a few previous ski trips together before; but we had never snowboarded together before.

It turned out that Justin just happened to be at Cascade that Saturday with a couple of his friends. I joined them for a little bit. It was really good to catch up with him and spend some time watching his friends to snowboard.

Overall, the day was a lot of fun. Snowboarding is a very athletic activity and I am not able to do it as much as I would like to be able to. It makes my legs hurt so much and exhausts me for days afterward. But, it is all worth it. 

Tiff, Otto, & I

Scott & Otto with their matching boards

Tiff & I showing off our stuff

Otto & I...it was getting really, really cold

We were so hungry after a day of snowboarding that we decided to hit up Cracker Barrel on the way home. There is nothing like warm comfort food after a day spent outside in the snow.  

I have a hard time snowboarding, thanks to POTS. It makes my energy levels really low, and I get excruciating pain down my legs. But, I am not going to give up another thing I love...just because my body keeps telling me not to do it.

I fall a lot when I board. I am not great at snowboarding, I just have fun doing it. 

This last time I fell on my butt so hard, I think I injured my tailbone a little bit. It hurt for days afterwards. Sitting down was a new adventure every time. I was making jokes about being an old lady because I needed a 'donut' to sit on and I love to knit. Funny picture, right?!  I was also really, really sore. I couldn't lift my arms above my head for about two days afterwards. Washing my hair was interesting.

In other breaking news...

Redhead

I dyed my hair for the first time ever. It is now a really dark red. I LOVE it. I have wanted to be a red head for as long as I can remember. My best friend, Val, has this gorgeous natural, curly red hair. I have always been so jealous of her for that (ever since we were 4). Besides the fact that she is beautiful on top of that! 

I am so happy I chose this color. Otto calls me Jessica Rabbit now. Haha. 

Dying my hair has also allowed me to take back control over part of my body. Most of the time I do not have control over my body like 'normal people'. I do not know if I will be able to wake up in the morning and get out of bed. Have the energy to get everything done that I need to. A lot of my life is unknown. So, being able to control my hair (as unimportant as that is in the scheme of things), makes a difference to me.

...Moose Trading Co...

I have spent a lot of time recently knitting things. I was taught to knit when I was in elementary school by my pastor's wife. I have started knitting again, and can make all different kinds of things.

This last week I have opened my own Etsy Shop called Moose Trading Co. There I offer custom hand knitting, made to order!! The shop is still in the process of being set up, I will be posting pictures of items, and setting prices later this weekend. But, for now:

http://www.etsy.com/shop/MooseTradingCo

Please check it out and check back for updates. Also, PLEASE let your friends know about it!!

I am sure I will post about Moose Trading Co. again. Especially after I get everything up and running.

Unfortunately, not everything has been all hunky dory. 

My POTS has been flaring up more then usual these past two or so weeks. I have been much more lethargic then I usually am and I have been feeling really sick. I haven't been able to sleep, which makes trying to feel better seem like a loosing battle.

It doesn't help that I had a sinus infection when I returned from Florida. I don't show the typical signs of sinus infections, I just get massive sinus migraines and have lots of sinus pressure. Having lots of migraines in a row was really not an enjoyable experience. I am terrified to take the antibiotics for the sinus infections. I did so about this time last year & had a horrible allergic reaction to them. My sinuses felt like they were on fire and burning thru my face. My stomach also felt like it was burning up. It was terrible.

Due to reasons related to insurance, blah blah blah. I have had to switch local doctors. Dr. Fischer is still my doctor on issues relating directly to POTS. I also need a doctor located closer to home for general well-being and immediate care. 

Changing doctors is not an easy process. Especially when you have a disease that most doctors haven't ever heard of before. Luckily, I think I have found a good doctor, who is willing to interact with Dr. Fischer and I while learn about POTS Syndrome. This is very important with how POTS effects my lifestyle.

My allergy to all over the counter drugs (tylenol is in many many prescription drugs too), and many antibiotics makes prescribing me any kind of medication a tricky and frustrating process. Sometimes it comes down to a decision of taking a medication that I will have a minor allergic reaction to. Or, not taking any medication at all. Yes....frustrating.

I need to have a doctor that will listen to me and trust that I know my body well. Believe it or not, I have run into many doctors who do not do this.

I have run into a couple doctors whose approach to medicine I thought were suspect. That is a discussion for another time.

Swirls & Sparkles,

K

<3

2011 Naples, FL

January 7, 2011

I have spent the last week in Florida with my Mom & Grandpa. It has been great fun. My Grandpa (on my Mom’s side), my Uncle Steve (on my Dad’s side, I actually have two uncles named Steve), and my second cousin Nancy are really the only family I see much of. I enjoy all the time I get to spend with the people I am related to. It is fun to hear all of the stories about everyone and play cards.

You can’t be a true Keefer without playing cards. When we play we are out for blood. At about age 6 you were on your own when in came to cards, even Grandma wouldn’t be ‘nice’ to her own grandchildren in a card game.

I can still hear her comments today, “Aren’t you going to be nice to your Grandma?” Then she would smile at me all sweet like. Ha. “Na-ty. Just na-ty.” She of course would have to be winning to keep playing.

Then, there is Grandpa…”Are you sure you want to play that?!” He chuckles as he steals what you would think is a good play. He of course somehow always has a better hand then anyone else. How that works I still to this day have not figured out.

Other then lots of playing cards, Mom and I carted Grandpa all over the place shopping. He was a fantastic sport about it. He even modeled some flamboyant women’s hats, that tittered on top of his xxl head (he & I wear the same size hats). I have some amazing pictures of this, which I am still deciding if I am going to post or not. Time will tell.

We ate lunch with Grandpa every day at his retirement center. It was fun to meet his friends and the waiters. The staff at ‘the center’ are really good. They all know my Gpa by name and bring him iced tea even before he asks for it. They know his wit and joke with him all the time. Much to my Mom’s relief they know he is diabetic and watch his dessert intake. Which is good…because he tries to cheat all the time. I would too if I couldn’t eat sugar!

His friends are some of the most interesting people I have met. I should start off by saying that the average age at ‘the center’ is 96. Which is unbelievable to me. I met a man they called ‘Little John’ (who isn’t even 5ft, tiny little thing), who is 96 and sharper then a tack. Sweetest man. He goes for a walk everyday. My Mom told him a joke at breakfast, he came all the way across the dinning room at lunch when he saw her to tell her a joke. Aw! He had to get close to her to whisper it in her ear because it was slightly dirty. Oh, also Little John is from the Bronx. He would want me to tell you that in his day when you went out you were to wear a hat, a fedora.

BeBe. There just aren’t enough words to describe Bebe. I think she might be my favorite this trip. She is a firecracker. You can hear her laughter walking down the hall to the dining room. She calls my Mom ‘honey.’ When we went to the Salvation Army on Wednesday we took BeBe with us. Oh she was a hoot. On the way there she was telling me all about this shell shop she used to own and how she still owns this storage locker that is full of shells. She has her opinions about everything, especially the food at ‘the center,’ and she will tell you about it. But, she will have you rolling in the aisles as she does so. BeBe is also 96. You wouldn’t know it by looking at her or talking to her though.

I want to know the secret that many of these people have who live with my Grandpa. He is considered a ‘youngin’ there. There is a woman there who is 99 ½. When my Grandpa pointed her out, I never would have thought she was going to be 100 in a couple months. She was up and about, still very active. Going out for dinner every week and doing her own errands. I guess I have no idea what age really brings.

As far as my Pots goes for this week, I have been doing particularly well. Even with all the travel, which surprises me. I have been consuming more caffeine then usual, but I have been about ten times more active then usual too.

I have been on a much more regular sleep schedule, which I think makes a big difference. I should be doing this while I am at home too, but it is just more difficult. I have been sleeping on an air mattress, so I am looking forward to getting back to the tempurpedic (mattress & pillow…I would live in bed if I didn’t have to get up and get some exercise) that I LOVE so much.

I have not been drinking as much water as I should be. I am looking forward to getting home and getting back to my regular h20 intake.

I have been getting much more exercise then I do on a normal basis. I have been doing really well with it actually. I am surprised at that. Other then being sore and having a pressure headache, I am doing pretty well. My Mom and I walked on the beach (which is a major workout for normal people) for and hour and a half and I felt fine.

I think that the weather has had a lot to do with feeling good. There is nothing like the power of sunlight and a good temperature. The beach was beautiful and that just put me in a great mood. I love the tropical setting. I would live in it full time if I could, it makes me feel so great.

So, when I get home (wheels down in about 30 min, probably) I would like to:

·      Keep up being more active on a daily basis with a yoga routine that I found before I left.

·      Get my water routine back in check.

·      Start getting to bed and waking up more on a general routine (baby steps).

·      Keep up with my meds (I have been doing really well lately, probably also a reason I am feeling more in check).

Well, this will all have to be done in steps…as I am home for a couple days and then I leave for Ohio for 2 ½ to see my best friend Val. Which might disrupt this whole process. I will just have to get back on the routine again when I get back.

Kicks & Giggles.

K

<3