The Joys of being GF

After doing some research, as a family, we decided that I should try going 'gluten free.' 
Seeing as Pots Syndrome and Celiac's Disease are both disorders of the autoimmune system. They have many over-lapping symptoms too...exhaustion, vertigo, migraines, etc.


We had to make this decision as a family because this diet is soooo $$$!!

I have been gluten free for 24 days now! Which is amazing since I just decided to do it one night, started the next morning & didn't look back.

I went to Whole Foods, the closest one to me is in Naperville. Thankfully, Brittany Darling was with me. When I got to the dairy section, I was on the verge of a minor break down. Up until that moment, standing that aisle that hummed quietly with the the sound of refrigerators cooling their beloved contents, I had been blissfully unaware of exactly what I would be giving up on this '------ free' diet- milk, cheese, yogurt, cream cheese, cottage cheese....!! I am SOOO EXTREMELY thankful that Brittany was standing next to me. I would have been hyperventilating on the floor if it weren't for her.


For the next hour, B-Darling (Brittany Darling) and I went on a treasure hunt, Whole Foods is aMaZiNg & labels all gluten free products with little purple tags by their bar codes/price tags. She and I were all over that store hunting for purple tags.


People probably thought we were mad, 'running' all over the aisles, laughing, grabbing food, and cheering when we found gluten free items in foods I liked. I always have fun with B-Darling. <3


Then, it came time to check out. I knew it was going to be expensive, being gluten free is not only a commitment of body and mind, by of resources also. At the register my wallet was bleeding. B-Darling told me she could see the pain in my face. 


I made it out of the store for just over $75 and found some items I really love!!! Also, one particular thing I will never eat again. I have learned how to cut bread out of my diet. Gluten free bread is SOOO expensive.


A HUGE THANK YOU to Brittany Darling for being a wonderful support system when I needed it that fateful day, just over three weeks ago.


Another great discovery in my GF adventure came along to one of the greatest women in my life, my God Mother Deb. 


My Mom and I went to Indiana a week and a half ago for my soon-to-be God Sister-in-Law's bridal shower. While we were there I was talking with Deb about being GF. She then took me to this Amish grocery store near her place with a fantastic GF section and natural foods in general.


The first thing I saw when we were in the GF section was granola. The exact thing I had been to 4 stores in the pervious couple days looking for. I got so excited I was almost jumping up & down in front of the shelf. I looked at my Mom, "go get a cart." She moaned. "This is going to be expensive, isn't it?" she replied. "Probably," was my only response. 
5 bags of GF granola, and a ton of other delicious food I was able to eat later....we were out the door.


I have been extremely thankful for my beloved htc evo, without it I am not sure I would be able to be gluten free (I have no idea how people did it before)! I have been googling everything I put in my mouth. Ha. I also have an app that I use to scan barcodes to see if the product is GF or not. 


This has been an adventure in self restraint.
One that will continue until further notice....

Off to Eat a Rice Cake,

K

<3

The 'I Wants'

When I look at what Pots has done to my life, it's hard to see the positive. When I was 18 I had big plans. I knew I could achieve them. I was ambitious, strong-minded, talented....

I love photography. It is something I would be interested in having a career in. I have taken a film course at NIU in it. I have taken two photo journalism classes. But, I don't have the energy to put into this activity that I love. Being behind a camera makes me feel alive. Hearing the shutter click is fantastic! 

I have also taken a design course. Which is another passion I have recently discovered. That too is turning out to be a hard passion to follow because my 'brain fog' makes remembering the complex functions in photoshop hard to remember and I have to constantly look up simple actions. Which is time consuming and exhausting. 

Both photography and design are things that I am good at. I just don't currently have the energy or brain function to take part in them. Which is infuriating!

I can't wait to have my full brain function back. It is so muddled with all the drugs & 'natural' brain fog that is associated with Pots Syndrome. Even after six years of dealing with this, it is not something that is comfortable.

The real me is in this body somewhere. I WANT OUT!!

I want to graduate...

I want to play viola again....

I want to take pictures...

I want to have energy....

I want my brain back....

I have been taught since I was little that the "I wants" are unattractive. At this point...I don't care. I feel unattractive. Maybe after I am me again, full of energy and creativity I will feel differently.

Wanting Differently,

K

<3

Lion's Roar

Sometimes things just suck.

     Whoever said, "What doesn't kill you makes, you stronger," probably wasn't dealing with an exhausting disease that has a shelf life of maybe four years, give or take...depending on diagnosis and treatment. I don't know who said this, they could have been dealing with something much worse then I have been in the past 5 years (3 years since I have been diagnosed, about).

I have asked, "why me?" countless times. 

     I have given in to the pure gutless emotion of 'being sick' and having people 'feel sorry' for me. It's not something I am willingly admitting to. Not something I ever thought I would openly admit. But, why bother to write about having Pots Syndrome at all if I am not willing to talk about everything when it comes to dealing with this 'invisible disease?!'
     As a junior or senior in high school if asked where I thought I would be at 23/24, I would have answered: likely graduated from college, out on my own with a job, in a relationship/engaged. Thinking about a wedding, family, house, and pets. 
     Instead, I am taking a semester off school because I am concentrating on my health. School is really hard for me because it is exhausting. It's hard to describe 'energy' because I haven't felt true, natural energy in so long. The brain fog is another issue. I am constantly struggling with memory and simple fact retention. I constantly feel like I am in a 'fog/daze.' It becomes apparent when talking with me on a daily basis, not something I am proud of. Have yet to graduate, like I had hoped to at this age in high school.
     As for a job, I am not officially working, outside of my etsy shop, and small things I do for others. I don't have the energy to. I am blessed with amazing parents, who are extremely supportive and understanding. Even tho, I know even they get irritated because my progress is minuet, and even stagnate at times. In fact, it is hard to tell I am making progress at healing at all, unless you evaluate how bad my condition was three years ago, to how I am doing now. All of this has been so hard on them, I wish I could do better, just for them. Parents should never have to see their child sick, especially like this.
     When people ask me how I am doing I always try to fluff up my recovery and make my progress sound like all goodies and gum drops. I don't want people to feel bad for me. When the truth is, I am struggling. Being sick sucks. That's just the truth...but when people ask how I am doing in a social situation, they aren't really asking to hear about how I am. For instance, how sick my medication makes me, how I get migraines all the time, or how I am allergic to everything, so my treatment gets messed up because I can't take the correct pills. Really, who wants to hear that? They are asking to hear about how I am getting better.
     Some may say I am callus. Fine. My view of life has changed a lot in the past couple years. Others may say this doesn't sound like me at all. It's probably because I am having an 'off' night. But, the feelings are true.
     Everyone struggles with things. I have struggled with this for a long time. Tonight, I found the courage to write it all down.

To the Lion's Roar,

K

<3

Kismet

I found this awesome phone cover, unfortunately it's an iphone cover. I looked for a similar cover for my htc Evo, but was unable to find anything of comparable style. Also, who died and decided that you need to pay $35 for a phone cover?! So, I am making my own. It is going to be a lot cheaper too! At $7 for the actual phone cover, $4.50 for the studs, and some super glue...I am coming out way ahead.

I currently have this case on my phone (I got it for $4, I <3 ebay). After browsing all the cases available for the htc Evo, and seeing how expensive it would be to obtain an new case, I decided to make some changes myself. After ordering the pieces for the black case with studs, I decided to make some changes to my current case. I ordered some black crystals to add to all the black areas on the leopard spots. It will add some texture and sparkle to the case at a cheap price.

I just saw these at Jewel. Ahhhhh. I am probably the most 'unlucky' Irish girl you have ever met (hello Pots Syndrome...rare disease)! I still love these pins tho. I am excited to get one for my best friend as a little surprise. My bff has loved St. Patrick's day ever since I can remember; we were three when we met. I also found another little trinket to send to her, and something for her little girl to wear on St. Patrick's Day.

Meet the new little love in my life! My best friend's little girl. She is three and a half months, and an absolute dream. Not a fuss or a cry-fest the whole time we were together. According to her Mommy, she is a really happy baby and barely cries at all.

.Beautiful Girl.

She looks so much like her Mother.

It was so wonderful to be able to spend some time with my bff and meet her gorgeous little girl!

My bff almost died during child birth (she had unseen, rare complications...she & I are like 'peas in a pod' according to her Mom). So I was so happy to see her again!! It had been decided ahead of time that I would not travel to be with her during labor and birth; but would wait to visit her & her little girl after all the family had come and gone. That way I could stay for awhile; and we could have time together, with the baby, and her immediate family (who are like family to me, they played a big part in raising me). After what transpired during the precious little girls birth, I was really sad that I wasn't at her side during everything. I felt like I should have been there, no matter how little I could really have done for her.

I know this post has been really picture heavy...I LOVE pictures. I recently downloaded this new 'retro camera' application for my phone. I was playing with it tonight. It is a more fun then a barrel of monkeys.

I you haven't yet checked out my etsy shop MooseTradingCo, I'll kick you!! Jk. But, please check it out. I would love your support. I am beginning to work on some new spring items. Especially a new English Driving hat that I am really excited about.

Chocolate Chips & Peanut Butter,

K

<3

Moose Trading Co

Moose Trading Co

Please check out my new Etsy Store, Moose Trading Co. There you can buy or commission all different kinds of hand knit items. There are already expamles of what can be ordered on the site. If you do not see what you want there, sent me a message through the store asking for what you are looking for and I will do my best to fit your needs.

Knits & Wits,

K

<3

{Crazy Pills}

There are parts of 'being sick' that people just don't discuss. For reasons I am still not completely clear on, but it's just something that is just not done. Well, I am going to break that silence.


All the medications that patients are prescribed to treat their to treat their ailments are wonderful. They help with the pain and specific issues that each individual disease entails. What is not really discussed are the side effects of those medications and the effect they have on the people, who are already sick, taking them.


One of the medications I am on is a daily preventative medication for migraines. When it was prescribed to me the nurse sat down with me and went through all of the side effects I might experience with it and how it had affected other patients. 


This drug is nicknamed 'the stupid pill' by those who take it. 


That should have told me something right there! I forget simple words, for example, table. I can tell you that it has four legs, it's made out of wood, you can place things on it, etc. But, I just can't think of the word. It is very, very annoying and makes me feel/look stupid. It happens all the time.


This medication also makes pop taste horrible. When the nurse first told me about this I didn't believe her. Then, I experienced it for myself. Diet Coke (which I LOVE) tasted hOrRiBlE, along with every other pop. This started after I took the first pill.


Oh, the list keeps going.


Some people use this pill specifically to loose weight. That is not what this medication is actually intended for; but, it is big side effect. I forget to eat a lot. When I do eat, I eat a lot less then I used to. 

The medication I am on for my heart is another whole story.


When I was first prescribed the medication for my heart I was a mess. I had to take one pill three times a day. The medication made my heart race and feel like it was going to break out of my chest. It was not comfortable at all.


I was also on an emotional roller coaster. I would be happy and full of energy for a little bit, climbing the walls the next minute, and then depressed for no reason.


The combination of my heart racing and being on a perpetual emotional roller coaster made me feel extremely paranoid. It was not fun. Nothing felt normal to me. It felt like I was on constant alert.


When I would start to feel more equalized or 'normal' again it would be about time to take the next dose of meds.


As I was having trouble with this medication when it was first prescribed; I found out that a woman in the community had just committed suicide. She had just been prescribed the same medication I was having trouble with, her reaction to the changes the drug induced had been life altering.


That was extremely scary to think about at the time. I was not in complete control of my mind or actions, and this drug was supposed to be helping me?!


It came down to the fact that without this medication, my brain was not being supplied with a healthy amount of blood. So, I stayed on the medication and learned to deal with the side effects.


I am thankful that over time I have had to deal with these issues less and less.

Chocolate is the Best Medicine,

K

<3

...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