Cruel & Unusual Punishment

**mIgRaInEs**

    I have suffered from migraines for a couple years now. While we are unsure as to wether the onslaught of my migraines is directly related to my Pots Syndrome, it is a side effect of the disease over all. It just happens that I began suffering from migraines a couple years before we think I became sick.

    A side effect of the disease that I do suffer from is that I am now allergic to all OTCs (over the counter medications, specifically pain medications). Before I became sick, I could take Advil, Aleeve, Tylenol, etc. Now, I am unable to takes these meds without having an allergic reaction. This makes dealing with my migraines hard, and very painful. On the positive side, my pain tolerance has increased.

    I have learned some holistic treatments to help with the pain of migraines. Smelling cayenne pepper helps relieve the pressure in the head, and helps ease the pain with some migraines. Others can be soothed by eating Chinese hot and sour soup. If these remedies don't work, drinking tea, coffee, or anything with caffeine may help to release the pressure. If none of those options work, there are two options left, wrapping your head in an ice pack and lying still, or facial/head massage on pressure points (there is also a pressure point between your thumb and pointer finger that will help relieve a headache when massaged).

    Sometimes the pain is just so bad, there is nothing to do but crawl into bed in a dark room and hope for sleep. At these times, wetting wash cloths and freezing them and then laying them over your eyes can help ease the pain in your head. Getting your neck and shoulders to relax is also another good way to help soothe a head that feels like it is going to explode. Heat packs are very helpful with this. I use cloth bags with rice in them that I heat up in the microwave.

    As always, drink lots and lots of water whenever you are in so much pain. It is important to take good care of the rest of your body while your head is in anguish. 

    I have been up all night with a horrendous migraine. I have taken my prescription meds, and they didn't do anything but take the edge off of the pain for a little bit. I have tried everything in my 'bag of tricks.' Now, I guess it is just a waiting game for it to go away. Woohoo.

Foot massage...anyone?? hehe.

Cupcakes & Hot Cocoa.

K

<3

[[[Pots Treatment...Water]]]

Water is YUMMY!!

As part of my treatment for Pots Syndrome, I am supposed to drink as much liquid, specifically water, as possible (gatorade is extremely good too, as I am on an extremely high salt diet as well...in other words, as much salt as I can eat in one day...salt on everything). This can be daunting some days, I just don't want to drink anything, or I want other liquids that just simply aren't as good for me. So I have taken a couple measures to make my water diet a little more bearable. 


I use my Starbucks cold drink tumbler everyday for water, I LOVE it. It goes everywhere with me. It is perfect for liquids and ice. Especially for me since I keep it by my bed at night and it goes in the car with me and into stores and such. I also knock it over and it doesn't leak. I don't have to open and close it all of the time like I do with my nalgene (which I still love and use frequently...great for traveling, specifically at the airport and camping). 


I have always been somewhat of a 'water snob.' But, I am even more-so now that I am drinking it constantly. I refuse to drink DeKalb water or Sycamore water unless it is filtered (yes, I really can tell a difference)...at least I can admit it right?? Also, I really can tell a difference between bottle water brands. I know it's weird. I prefer Ice Mountain. I LOVE ice water.


Having to drink it all the time I have experimented with different flavors in water...lemon and lime are both good, lime is the best of the two in my opinion. 


This summer Caribou had this fantastic tea, white tea with lime and mint...it was fantastic. I was so sad to see it go at the end of the 'seasonal' period. So I did experimenting and was able to make it at home, not as perfect as Caribou, but it was still good. Then, I tried it without the tea and came up with the best 'water recipe' that I have tried so far.

I have been drinking water with mint and lime...it is amazing. Rip some fresh mint leaves and sprinkle them over some ice cubes, squeeze some lime juice over the ice cubes and add water....YUM! Very refreshing and so much better for you then soft drinks and other sugar filled drinks. It will also quench your thirst. Try mint and time with tea and a little bit of sugar for another delicious drink.

Stay Hydrated.

K

<3

Snow White

Snow White

[Sleeping in a Coma]

These last few days I have felt like Snow White, waiting for my true love's first kiss to come wake me out of my deep catatonic, poison apple induced, coma. It's not as fun, or romantic as is looks in the Disney movies. No blooming foliage, or curious furry friends...just lots of exhaustion and un-fun meds to take. Also, trust me, when sleeping that deep....no girl's make-up looks that perfect, nor does one's hair stay neatly in place. HA. Any girl but a Disney princess would wake up looking like a raccoon with a mess on top of their head, just waiting for a deep condition treatment and some major TLC.

Adorable, I know, but now sure about wanting to wake up next to that in the morning...or anything having to do with love's first kiss.

Sometimes with Pots, I don't have a choice about what I do. The exhaustion takes over and I just have to rest. No matter how much I want to do whatever it is that is going on. 

For example, I love snowboarding. Otto went snowboarding with a couple friends last weekend and I was supposed to go with them. Unfortunately, I was just too tired.

I also LOVE photography, which I haven't been doing any of because I have been too 'busy' spending all of my energy on school. Which, trust me, isn't a lot of energy.

The list just goes on and on...

Sweet Dreams.

K

<3

The Works

      Finals are this week. One of the many problems I am having is that I can barely stay awake long enough to eat, studying is not even on the horizon. Which is not my usual problem (usually I can't sleep at all). Two of the days that I had planned to spend studying and working on a project I have due...were spent in bed, literally unable to stay awake. 

      No matter how hard I tried to force myself out of bed, I couldn't get up. When my body does this, there is nothing I can do about it. Even caffeine can't keep me awake. This happens a couple days a month usually. There is nothing I can do about it, no way to tell when these days are coming.

      I hope my body will gets its priorities in order. I need to be awake for my test tomorrow and my brain needs to be clear so I can think. After all, if I am there for the test, but my brain is foggy (as is known to happen with POTS), I might as well just have skipped the test all together.

      Trying to get through school with this disorder has been an adventure. I have had to accept that I currently do not have the ability to perform at the level that I used to, and take one day at a time. I have be doing better and better as the treatment has continued; but I get frustrated as I just want to be my 'old self.'

      I should probably be studying right now and not taking the time to write this, but I find it easier to take time to sort things out in my head.

      I am ready for Christmas break!! Also, for the week in Florida my Mom & I will be spending in with my Grandpa (as we do every year). Hopefully, the sun and my Grandpa's wit will help me to feel better to face another semester of school.

Sleeping on My Text Books,

K

<3

P.S. Audrey Hepburn is AmAzInG! Especially as Holly Golightly.

"You could always tell what kind of a person a man thinks you are by the earrings he gives you. I must say, the mind reels."

-Holly Golightly

My Special Treat: Salted Caramel Hot Chocolate from Starbucks

      With Pots Syndrome, days can be really hard. Many days I just spend lying around the house. Many days, I don't have enough energy to get out of the house. Luckily, many of my professors so far have been very understanding about my condition and have made special arrangements with me so that I can do a lot of work from home.

      The great thing about staying at home is that I can live in comfy pants and sweatshirts all the time. Which I love.

Energy is extremely precious. The exhaustion daily I feel is unlike what 'normal', healthy people feel. I can't wait to feel better and have energy again. It's something I think about multiple times a day.

      Today, Otto & I went out for a special treat, we had a Starbucks date. <3 I tried the Salted Caramel Hot Chocolate for the first time. I have been wanting to try it since I first heard about it a couple weeks ago. Usually when I go to Starbucks I get coffee for the caffeine. It helps a little with the exhaustion.

      After some research I found a fairly simple recipe that may be similar to the salted caramel hot chocolate.

Alice’s Salted Caramel Hot Chocolate Recipe

Ingredients:

3 tablespoons Caramel syrup, heated to luke warm  (recipe here)
Hot Chocolate (4 tablespoons of ganache plus 6 oz. of milk, heated)
Canned Whipped Cream
Pinch of Medium Coarse Sea Salt

Directions:

Pour 2 Tablespoons of caramel syrup into a mug so the inside of the mug is coated well.  Add hot chocolate and stir everything.  Top off with with cream, drizzle with remaining caramel, and sprinkle with sea salt.  Enjoy!

http://savorysweetlife.com/2009/11/salted-caramel-hot-chocolate-recipe/

(recipe & picture)

Hope you are keeping warm!!! 

xoxo,

K

<3

I Went to Mayo Clinic & was Prescribed McDonalds French Fries

True story.

Part of the treatment for Pots Syndrome is a massive intake of salt everyday. Anything I eat, should have salt on it. As much salt as I can handle, is the appropriate measure. 

Basically, I am supposed to ruin all of the food I am eating. Yippee. 

Dr. Fischer told me to order a large McDonald's fry. There is TONS of salt in there!

I am also to be drinking insane amounts of liquid.

I take water with me where ever I go.  

Well, yet again, I have taken my sleep meds, I am exhausted beyond words, and here I am, awake at 5:30 AM. I just wish I could sleep like normal. Boo. Hiss.

Sunrise with Come All Too Soon,

K

Might As Well Dive Right In...

      My name is Katherine (Kassi, Kat...), I'm 24, just over three years ago I was diagnosed with Pots Syndrome, Postural Orthostatic Tachycardia Syndrome,  at Mayo Clinic by Dr. Fischer.
      Pots Syndrome is a rare, unknown disease (most doctors have never heard of it) that can come about after a major surgery, illness, or injury. The symptoms of this sickness are extreme, persistent exhaustion, vertigo, migraines, chest pain, muscle weakness, pain in legs & abdomen, brain fog, disorientation, impaired memory, sleep disorders, and much more. The good news is, that with the proper treatment, Pots is treatable and in most cases curable.
      This disorder is not something that my family and I have been open about. In fact, we have been fairly secretive about the fact that I have become sick at all.
      It took over two years for my parents to be convinced that there was something more serious wrong with my health then me just being lazy.
      It all started my senior year of high school, when I got pneumonia and was out of school for 23 days. I woke up one morning and just couldn't get out of bed. Before I got pneumonia I was extremely active, I was in orchestra, played in a quartet, was photo editor of the yearbook, had a boyfriend, and had an active social life. I was, what my doctor describes as, "a type A personality." After 'recovering' from pneumonia it took everything I had just to finish school & graduate.
      I never really 'recovered.' I wasn't ever back to myself, fully active after that. I'm still not.
Not knowing anything was truly wrong, I moved to the north side of Chicago to attend North  Park University; where I started my freshman year the following fall. This is where I started to really notice that something was wrong with me. 
      I wasn't outgoing anymore. I didn't have the energy to go out & meet people, do things, really make an effort. I was sleeping, or laying around watching tv. I didn't have the energy to go to class, when I started skipping class to sleep, I knew something was off. Before I got pneumonia I never would have missed class.
      Not only was I not making new friends, but I wasn't playing viola. Something I had done everyday since I was three. I was at North Park on a music scholarship, I had been first chair of the high school orchestra for two years, I had gone to all-state three years in a row...no matter what I should have been playing viola.
      Somehow I lived through being a camp counselor for a summer. Having Pots Syndrome, untreated, and working 23 hours a day, 6 days a week for the summer in that active environment?! Now that I look back on it, I have no idea how I did it. My doctor is even more astonished by this. By all accounts, I should not have been able to make it through that summer like I did. Especially since I tore my MCL half way thru the summer and finished working with my knee in an immobilizer. I give major credit to the senior staff at Covenant Harbor. I couldn't have finished my job that summer without their support.
      I returned to North Park University after that summer and started my sophomore year. School was hard for me. Which it never had been in high school. My head was foggy, I was having a hard time concentrating in class, and I couldn't remember things. All characteristics that had never been usual for me in the past. My grades showed that I was struggling, also unusual for me.
      I transferred 'home' to NIU, Northern Illinois University, for the fall semester of my junior year.  I moved in with my parents. After seeing me on a daily basis, my parents became alarmed. It was finally obvious to them that something was wrong. 
      The doctors visits start....
      For awhile I was in my family doctor's office every other week, sometimes every week. I used to be so scared of needles I would throw fits like a small child. After all the tests and treatments I have been through, I can handle a needle like a champ.
      I saw multiple different specialists. Each one of whom would look at my list of symptoms and think I had their 'speciality.' None of them could ever explain all of my issues, just a few at a time. With this in mind, I was diagnosed with MS, Fibromialgia, and a couple other debilitating diseases. One of the specialists even tried to convince me that I was just fine. Even after seeing me when I was in the ER, convulsing uncontrollably (and had been for an excess of 10 hours).
      Thankfully, I was referred to Dr. Fischer at Mayo Clinic by a family friend who had some connections there. After some emails back and forth with him, and a few at-home tests, he asked us to come see him. 
      After seeing Dr. Fischer at Mayo Clinic, he accounted for all my symptoms and diagnosed me with Pots Syndrome.
      Dr. Fischer is fantastic!! He did the most through examination out of any doctor I have ever met. He spent two hours getting to know my Mom & I. He talked with us about everything from why I had to come see him, my daily life, my relationship with my parents & friends, to school, work, etc. He really made an effort to get to know me and what was going on. He wanted to rule out everything possible before coming to a conclusion. 
      After a couple tests, Dr. Fischer came to the conclusion that I had Pots. He made sure that I completely understood what this meant, treatments, and how I should go forward.
      Mayo Clinic is the most amazing hospital. Besides the fact that it is beautiful, it is compact and high tech! What the 'normal world' would take weeks to schedule and get the test results back on, Mayo Clinic does in hours.
      Oh. Did I mention that the lobby of the clinic is gorgeous? The whole hospital is surrounded by a shopping mall? The hotels and other buildings in the vacinity of the hospital are all connected by tunnels so you don't have to go outside in the bitter cold, winter months.

Chandeliers hanging in the lobby of Ganda Building at Mayo Clinic 

Lobby of Ganda Building at Mayo Clinic leading to 'Subway'

Pediatric Wing, Mayo Clinic

Lit Wall Decoration, Pediatric Wing, Mayo Clinic

      I saw Dr. Fischer in the afternoon we scheduled tests, was in for 4 major tests the next morning, and we had our consultation about the test results that afternoon. Unbelievable.
      I am thankful to know what I have. It is a day to day struggle to deal with my symptoms, but I am on the path to recovery. I think that writing about everything and being open about the joys and struggles of daily life will help me in my adventure.

Meet my fantastic doctor!!

Dr. Fischer, my doctor at Mayo Clinic, addressing Pots Syndrome

Sweet Dreams,

K