A Love(?) Letter to Twenty Six.

Dear Twenty Six,

I have just barely begun typing and I feel the tears streaming delicately down my cheek, as I sit here prepared to reminisce over the last 366 days. It makes sense for this to have been one of those years that just throws in one extra day.

So here we go Twenty Six, you sweet, sorrowful year. I was challenged and changed, shaped and molded, weakened and sharpened, broke down and build back up, I fell until I remembered how to fly. I felt the depths of hopelessness, and fell into that familiar pit of despair.

But in that pit you taught me how to crawl until I could climb, you taught me how to reach out and ask for help. You taught me how to breathe through the panic, cry through the pain, smile through the tears, and laugh through the ache.

You taught me to love and accept love fully and deeply for the first time in my life. You taught me how to build trust the right way, on a firm foundation, rooted in love and faith. You taught me to fear and to fight. You brought a crisis of faith, in turn for renewed faith. You brought me a reckoning of all the emotions that I have held back for so long, a crumbling of the walls that I’ve worked so hard to build convinced they were keeping me safe.

There was a lot of necessary pain, but with that you also brought me the help I needed, the healers I needed, the paving of the path in front of me, a home with my husband, and healing of my heart. You shook my foundation, you tried to break my spirit, but ultimately you brought me back to me. This year we did the hard work, the start of the rest and repair after all these years of running.

I began my twenty sixth year of life, hopeless, crumbled and afraid, reliant on more meds than ever before, and more help than ever before. In my mind that was the rock bottom. And then the the world paused and I was left with just ME, limited access to health care, and the few people that stuck by, and there we began the real work. All this time I thought I would heal when I completed the task of fixing my physical body. This year I learned that my physical body is above all else the housing of my soul. I weaned off of the harmful medications, started to trust my body and my symptoms again, found my breath, and then the real healing began repairing the patch work of my soul, a reconciliation of all of me to me within me.

I’m not done yet, i’m only merely getting started. But this year opened the doors, laid the foundation, and forced the steps forward. So Twenty Six, I cherish you, because the way you pushed could have sent me permanently away, forever running, but instead I chose to stop running, and start my journey back home to me. Thank you for pushing me down, because of you I learned how to fully rise up.

November 2019

Instagram is my diary of sorts. But a few days ago I accidentally deleted the last year of my life in pictures. So now I am going back through the events of the past year, from the other side of it. Leaving my proof of existence in the world on the platform once again. Its oddly poetic that my trip to Mayo clinic was the last of the posts deleted, or maybe God just saw an opportunity to help my heart and body finally get brutally honest and process what truly happened at Mayo. Either way, here I am rolling with it, seeing where this new exploration may lead me.

2019 us.

So let’s start from the beginning. November 11, 2019 I had a virtual follow up with my Mayo Doctor, my body had crashed, my local team was at their limits and asked me to follow up with Mayo. He took one look at me and said get down here, I think we can finally nail this down. So eleven days later I was in Arizona. Round two here we go.

2018 us.

A little back story, trip one to Mayo Clinic in 2018 I got the whole pentad diagnosis, POTS, H-EDS, MCAS, Dysmotility, and Autoimmunity. However, aside from Hashimotos, we had no idea what the autoimmune mechanism is/was. He just said “this turns into a big autoimmune disease one day, I just don’t know what it will be, we have to sit, wait, and retest.”

So I went, we did the retests, and we were operating clinically under the assumption it was Sjogrens that would present. But it didn’t show. It was literally one lymphocyte away from showing proof of Sjogrens on my lip biopsy.

We are assuming it is because I am on an immune modulating medication, that I didn’t have time to go off of, that the response was suppressed. I got a clinical dx of Sjogrens and was sent home to get an early auto antibody panel. I went off LDN, got that panel and it was positive, but early antibodies are not diagnostic of Sjogrens. Therefore Mayo couldn’t prescribe the one thing I have always needed. Instead they recommended weekly IV steroids and plaquenil. 

Physically I was wrecked, this trip and another round of Autonomic Testing took it all out of me. But emotionally I was even more wrecked. I put all my hope into the fact that this was finally going to show, I would finally get the treatment, and maybe have a shot at life. I put my full faith in medicine (which I learned so long ago not to do), and I was pretty crushed. Other than the steroids there weren’t really any options, I felt less “solved” and more confused then before. And ANOTHER trip to Mayo Clinic where they throw their hands up and say, “wow this is bad but we can’t solve this puzzle yet,” was some sort of weird emotional crisis. My PCP and I discussed options and together decided that IV steroids was not a good plan yet, and would cause more harm than good (based on the fact that previous steroid tapers have made me an awful person, and the repercussions of steroids are large). At this point, I was done. I was ready to quit trying. This trip just took it all out of me.

Back home I woke up one day to a brief moment of clarity, and this little nudge in my heart to remember who I am and find another way. You see I always have a plan A, a plan B, a plan C-Z. The days are so blurry, because my mental health was in the dumpster, my husband was still four hours away, and it was winter in Idaho. What I do remember is a text from my one of my sweet friends from Portland, saying “do you have the space for me to update you on my appointment with Dr. *?” And finally the lightbulb came, I got onto my chart and sent a message to the saint of a woman who managed my care in Oregon, and explained everything, and essentially said can you help me? The next morning I woke up to a chart message saying yes, get on my schedule and get over here as soon as you can. (Pre virus world obviously). So I was scheduled for March. I just had to hold on until then, which I knew would be okay, thanks to the amazing team of natural health care providers I have in my life. Lol spoiler alert…. The world changed a bit in March. 

It is important to note that the trip to Arizona was also an immense blessing. Antonio was living four hours away at the time. We had spent more time apart than ever before and it was wearing on us. We had five whole days just us, and it was blissful. We only got one day of Arizona sunshine, and the rest was monsoon weather, but there is no one else I would rather be trapped in a hotel with than my sweet Hubby.

We hacked a way to watch hulu, cuddled up, found the best coffee shop, and darted outside to explore anytime the rain cleared.

Again and again he is my rock, my protector, my very best friend, and the one that always comes through to save my soul. I love you so much big guy.

Mayo Clinic Follow Up

I never wrote a blog post about my follow up visit at Mayo Clinic. I’ve told myself that it’s okay because I turned to instagram as my outlet instead, but in reality I wasn’t ready to discuss it. I was still a bit lost and confused, so I have never wrote this all out.

It has been almost eight months since I received my full diagnosis from Mayo Clinic. To start with I will just tell you all what my diagnosis from them is. My primary condition is Hyper-mobile Ehler Danlos Syndrome. I also have Postural Orthostatic Tachycardia Syndrome, and Mast Cell Activation Syndrome. Along with those I have antibodies indicating Hashimotos Thyroiditis, and then my previously diagnosed conditions of Endometriosis, Ovarian Cysts, and Irritable Bowl Syndrome.

I had the diagnosis of POTS when I went to Mayo Clinic. My reason for seeking additional testing was that I knew there was more to it. I knew that there was an underlying condition, and I needed someone to tell me what it was.

Anyways, about Mayo Clinic. My follow up appointment was with Dr. Goodman himself. He is a kind and brilliant man, and I am so thankful that I was placed with him as my doctor. He spoke to me like a human, and gave the the reality and details of my condition without scaring the hell out of me. He is realistic and logical, but gentle and compassionate. He has amazing bedside manner, which most of you know is often lost in Doctors of his level.

Upon diagnosis, he put me on medications. I started taking Mestinon for POTS. For MCAS I was put on Cromolyn Sodium, Allegra, and Pepcid. Over the course of the next few months of my MCAS journey the added Zyrtec, Zantac, Singulair, and Xyzal. (I also spray Flonase down my throat because I have a condition similar to MCAS in my esophagus called EoE, but that started prior to Mayo Clinic).

ANYWAYS all of that turned me into a zombie. My body was not responding to the Mast Cell protocol, and  I was not myself, and could hardly function. I couldn’t drive a car of anything so I stopped (under the supervision of my PCP and other local doctors, this too will be explained int the next post).

As far as the medication for POTS, I also didn’t respond well to it. It gave me insane stomach cramps and I had to stop. There are more medications out there we can try though, so I am not hopeless.

For now, I am choosing to go down the alternative medicine path. That does not mean that I do not have all of the faith in the world in Mayo Clinic. I am forever grateful to them for taking me on, for running every Western Medicine test imaginable, and for getting me a full and accurate diagnosis. I don’t want to think of what my life would still be like without that diagnosis. So again I am forever grateful to them. I am just of the opinion of why not try the natural stuff first? The worst that can happen is that it doesn’t work and I go back on medication.

In the next post I will talk all about my alternative therapies, and what has worked for me, so stay tuned!


My First Mayo Clinic Experience

What a world it was to walk into Mayo Clinic, coming from small town Idaho. The place is bigger than my elementary, middle, and high school (all of which are in ONE building). Even just based upon appearance I immediately felt confidence in the facility. However, this place was huge, and upon first stepping in, it should have been very over whelming, yet there were people to help everywhere you looked. We walked up to one of the help centers and someone kindly gave us exact directions to get to where we needed to go.

My first appointment was just a scheduled time to be there and register. Meaning, give them my insurance card, drivers license, that appointment was at 7 am and my next was at 9:30 so we went back to the hotel, and I power napped. I was fasting so I was cranky.

Back to the clinic for my 9:30 appointment, this was the real deal appointment. I was lucky enough to be placed in the care of one of the top neurologists in the country. I didn’t know much about Dr. Goodman going in, Other than the fact that he knows his stuff.

He walked into the room at 9:29, and did the interview and exam 100% by himself. He was thorough and you could tell just by watching him how brilliant he is.

I have dealt with a lot of doctors over the last 10 years and I have grown to realize that the good specialists are the ones that quietly stew in their brain and don’t have time for chit chat. However, I was pleasantly supported by Dr. Goodman’s bed side manner.

Dr. Goodman is a kind and brilliant man, and from the moment I met him, I had all the confidence in the world in him.

He did his exam and then sat and had a conversation with me. He asked “first I want to know about you, what do you want out of this visit?” I simply stated “I want to be 24 years old and feel like I’m 24 years old, and I will do whatever it takes to get closer to that.”

He said “alright, I’ll tell you what I see but first I want you to hear me say that I am validating your symptoms and I see clinical proof that something is going on.”

There aren’t words to properly explain the validation he gave me in that moment. For 10 years I have been kindly (and sometimes not so kindly) told that I’m crazy, that my symptoms are clinical manifestations of mental disorders. I have been told I have depression, ADD, bi-polar disorder, PTSD and flat out told I’m a hypochondriac. When you are told all the time that you are crazy, it is damn hard not to believe it. I have been on 4 different types of antidepressants. When I flew to Phoenix I was on three different antidepressants, and honestly thought that would be my life forever. (Happy to report that I have successfully transitioned off of one, and will begin working on the other two).

Anyways, following that appointment I had to continue to fast until another appointment at 2:30. This appointment was the reason for fasting. This appointment was an appointment for a pretty big test, it took about two hours. This was a test to test my Autonomic Nervous system, so my sweat and hormonal responses to certain stimuli. I was strapped to a table and first they tested my sweat response by putting sensors on my skin, adding some acetylcholine (neurotransmitter) and then conducting electrical stimulation to the area to see if I would sweat. Not going to sugar coat it here, that test was a bit uncomfortable, but it was quick and honestly I would take days of getting electrocuted if it meant someone would give me answers. Next I did some big in hales and exhales timed with a machine, then I did a forced exhale with back pressure again timed with a machine, and the final test was a tilt table test. If you aren’t familiar with a tilt table test, basically you are just secured to the table and they take you from laying to standing and measure you vitals. Super easy, and very routine diagnosis for POTS.

After that I was done for the day, it was about 4 pm and I was finally able to eat and have a bit of caffeine. We took the rest of the day to explore the area and then had dinner at Whole Foods (a health fanatics dream land). And then headed back to the hotel for some sleep.

The next morning my appointment was at 9 am. This was just a lab appointment to get some blood draws, and by some, I mean a lot. Following the blood test I could drink little bits of water, but needed to remain fasted for another test at noon. This test was to determine my vital signs and hormonal responses to stimulus. This one was pretty easy, I got to sleep for 30 minutes and then I stood for 10 minutes. My vital signs were measured and blood was drawn at each step (yes day 2 consisted of a lot of blood loss). Following that test I was allowed to eat, and most importantly have some coffee. My sweet nurse had heard me say earlier how the worst part of fasting was no coffee, so they had coffee waiting for me as soon as my test was complete.

The last thing to do that day was get my holter monitor on for the next 24 hours.

I am in the middle of, and was also at the time in the middle of, doing a big fitness program so I asked if I was allowed to workout with the holter on, they said “You can do anything you want to but we don’t want you to sweat.” Perfect, I don’t sweat anyways!

We went back to the hotel, I got my workout in for the day, and then we headed out to find a trail to hike. I was not about to let the beauty of Arizona go to waste, so we hiked (slowly, because I was seriously lacking blood volume). And then back to Whole Foods for some dinner.

Day 3: The only thing on my agenda was to start my 24 hour urine test, and drop off my holter monitor. So this day we were pretty much free to explore Phoenix. One of my best friends happened to be in Phoenix at the same time we were, so we met her and her family at the zoo. It was a perfect last full day in Phoenix.

Day 4: I just had to drop off my urine and then head to the airport.

Leaving Phoenix was tough. I became so attached to the city. It is the place leading me to answers, and I loved the sun. I honestly didn’t want to leave, but I left knowing with all my heart that we would be back.

Right now I still don’t have the answers, because I have to go back for a follow up to get those answers (like I said, I knew we would be back). However, even without answers; my heart is so at peace. I feel empowered by my limitations, and validated in the fact that those limitations are real.

So I guess for now, this is all I have until my next trip to Phoenix. But, I do want to say; if you are struggling with something, or you are not getting the answers or help you deserve, I HIGHLY encourage you to reach out to the Mayo Clinic network. They are amazing, and they will help.

Pity Party

Most days, I do well. I keep my outlook strong and my head held high, but some days I find myself in the middle of my very own personal pity party. Moments of grief for there person I used to be, the life I thought I would have, who I thought I would be “when I grow up.” I have moments of anger for the way I feel, and the situations I face. I get frustrated with myself for not physically being able to do all that I want to do. I get frustrated with the people around me for being healthy, and living the life that I sometimes desire.

I don’t hate who I am, and I don’t despise my illness or the situations that I face. I believe everything in life is meant to shape us into something or someone, for the benefit of another person. I believe one day my story will help someone else and that is why I want to share it.

I have full faith in the plan that God has for my life. I have full faith that I will amount to everything I am meant to be. There are just some days where I would really like to chat with God and ask him “what the hell am I supposed to do with all this?”

I know what to do, I know how to get over myself, and leave my little pity party. I know that the key is to live for who I am today, what I can do today. But today I am a student, getting my pre-requisites done for something that I may never be able to do and it would be the biggest lie, if I said I don’t have days where I question everything and crave answers.

But here’s the thing I don’t know. I don’t know what will happen tomorrow, what will happen a year from now. I don’t know what my career will be or what will happen to my health in the future, but in reality; NOBODY KNOWS. Nobody knows when they are going to die, when their health will take a turn for the worst, or when their life will get completely shaken up. Nobody knows when their life will change for the better, when they will suddenly find a cure for their illness. People who have won the lottery don’t wake up and say “you know what today I’m going to win the lottery.” Things just happen, and it is not up to us or our timing. We determine our attitude and our ambition.

Everyone has bad shit they have to deal with, everyone questions their future, everyone has days where they just feel down. This does not make me weak or pessimistic. It does not make me selfish or self-sabotaging. This makes me human. Fear, doubt, worry, self pity, and pain, all make us human, just as much as joy, health, hope and happiness.

I can’t predict my future, I can’t say what happens next, neither can the healthiest, happiest person on the plant, nor can the saddest, sickest, most hopeless person.

All any of us have is today, this moment. What are you going to do with the moment you have in front of you, to make the best of the life you have right now?

Tips for Holidays

Thanksgiving; a day of being thankful, but more so in our society a day centered around food. If you are a normal person, Thanksgiving may be the best day of the year! A full day to fill your plate and your belly, until you are uncomfortably satisfied.

However, any IBS, IBD, food allergy sufferer, or anyone who has to stick to a strict diet, will understand that Thanksgiving is often a dreaded holiday. For many reasons. The comments, the questions, the judgement from others, and the feelings inside yourself, feelings of deprivation, or missing out on fully participating in life. I have spent many years feeling this way, so trust me when I say; I understand, and you are not alone.

Here are some tips for getting through a Holiday meal, or any social gathering for that matter (because let’s face it, in todays society; all social gatherings are centered around food).

  1. Bring a dish, if there is something you can eat, bring that to share. Whether that be a certain fruit, veggie, healthy carb, or snack. You can bring a fruit or veggie tray, you can bring a roasted veggie dish, make low a low carb or paleo version of a holiday favorite.
  2. If you are confined to a liquid diet, bring that to enjoy while everyone eats. If you drink a smoothie for every meal, make it before you go and bust it out when everyone else eats. You can even put it in a bowl and eat it with a spoon to make it feel more “normal.”
  3. Have plenty of fluids. Make sure you have water, bring tea. If everyone is enjoying cocktails and you have to refrain, you can enjoy a sparkling water with a lemon or lime wedge (if you can’t handle the carbonation just use water of course), put whatever you are drinking into the same type of glass everyone else is using.
  4. When it comes to desert, again; do what you can do. Have a plate of fruit, have a protein bar, bring a version of a desert you can eat, or make a cup of tea, or mix some hot water (or nut milk) with some raw cacao powder and call it hot chocolate (add some collagen peptides for gut health, protein, and some extra creaminess), if you have to sweeten use honey, Yukon, maple syrup, or stevia if you can handle that (I personally try to stay away from artificial sweeteners, because they are an IBS trigger, but they are perfectly fine for people just trying to live a healthier lifestyle and keep the calories low).

And the most important tip of all;

  1. DO WHAT IS BEST FOR YOU! Nobody else has to live your life, or live in your body. People may not understand your limitations or the decisions you have to make. People may even think you are crazy, or being dramatic. Whatever, that is their problem. Again, they don’t have to live in your body. Your health is 100% about YOU, so do whatever you need to do to feel the best that you can feel. The people that really truly love you, and the people that are actually worth your time, will understand and support you in whatever you need to do.

Be as open and honest about your situation as you desire (or as discrete as you want, again it’s your life). Do what you gotta do, and make the Holiday what is best for YOU. The holidays, and life for that matter, are not about what you can or cannot eat. It is about being thankful for what you have, who you are, and the body you are blessed to exist in. No matter the condition of you body, or your health, you still have life, and that is still a blessing.

Living for “when”

I came to an an abrupt realization today. I have been living for “when”.

I was diagnosed five years ago with POTS, which I believe I have been living with since I was 14. When I was diagnosed, POTS was just becoming a thing. Nobody really knew what it was, how it happened, or how to treat it. I was told that “most people grow out of it.” So since my diagnosis I have been sitting here planning for when. I changed my major to Psychology after diagnosis, so that I could wait to go through nursing school WHEN I got better. Upon graduation, I took time off and started working to make money until I got better. When I got too sick to work, I decided to go back to school so that I could live off of financial aid and get my nursing pre reqs done so that I was ready to go when I got better.

But I’m not growing out of POTS, if anything I’m growing into it. I’m not getting better, I may actually be getting sicker.

This isn’t a pity party, this is a realization. I can no longer live for “when I get better.” I can no longer prepare for a day that may never come, because what kind of life is that?

I have to live for now, I have to live for who I am now, and what my body and mind can do now. If I can never be a nurse, that is okay. That doesn’t mean I can’t help people, and that doesn’t mean that I can’t fulfill this passion in my soul.

I don’t know what the future holds, I don’t know how my life will turn out, all I know is that I won’t fail to live the best, most healthy life I can NOW.

After a sick day

I call them sick days. Other people have other names for them, some call them flare ups, some call them bad days. Call it what you want; I call it a sick day. Just like a normal person would have a day where they don’t feel well and opt to watch movies on the couch all day, except my sick days are spent laying on the couch, setting guidelines to my husband for when he is allowed to take me to the hospital.

Anyways yesterday was a sick day. I have had plenty of sick days recently but this was a bad one. This day was accompanied with some of the worst abdominal pain I have ever felt in my life, nausea, headache, and vomiting. Twice I passed out from pain while laying on the couch.

I know you’re probably thinking right now WHY DIDN’T YOU GO TO THE HOSPITAL?! The answer is; because there is never anything they can do for me. They would do scans, find nothing. They would offer me pain meds and I would have to weigh the pros and cons; is temporary relief worth days of constipation, bloating, and pain? They might even offer me morphine, but my blood pressure is so chronically low that morphine makes it dangerously low; is that pain relief worth feeling like my heart isn’t beating?

They would have drawn blood, done scans, charged my insurance and my parents a butt load, and come up with nothing. So I don’t go, I hold off as long as I can. The only thing that will make me go to the hospital is anything to do with my heart, blood pressure, or dehydration (because when you have POTS, dehydration is life threatening very quickly).

Anyways, enough of the background. This isn’t meant to be a bitch session.

What I have to say the day after a sick day is two things. One, I am tired.

Two, I am thankful.

I am thankful for a husband who will pick me up off the floor, and carry me to bed. Who will wait on me hand and foot, anticipate my every need, and listen to me, and trust my opinion about when I need medical attention. I am thankful that he knows me, and has been on this journey with me long enough to understand (as best as any of us can) what is happening.

I am thankful for parents who never ever think about the money, before they think about my well being. Who pay all of my medical bills, even though that is not a financial burden that they need right now. Who always say “go as soon as you need to” not “hold off as long as you can”.

I am thankful for health insurance, because God only knows where I would be without it today.

I am thankful for a puppy who doesn’t leave my side when she knows I am sick.

But more than anything I am thankful for the good days, because I know what the bad days are, and even if the ratio is 6-1 sometimes, the good days are worth every single sick day.

How are you?

How are you?

It’s such a polite question. When asked in standard conversation, it is instinctive to reply with “I’m good! How are you?” In a world where you are sick all the time it becomes an honest question from most people, spoken with pity in their voice. So much pity that I never want to answer honestly so I respond with the same general answer. Then comes the follow up, “no really; how are you doing?”

People honestly want to know how I am doing, but they also can’t handle the truth. If I were to respond with “well, i’ve had three emotional breakdowns, spend an hour on the toilet, and vomited six times.” How well do you think that would go? So I respond with something like “i’m doing okay,” “I’m still kicking,” “Feeling good today.”

Then there is the complete opposite end of the spectrum where people ask “How are you?” “When do you apply for nursing school?” “Where are you working right now?” At which point all I want to do is scream and tell them that I am too sick to apply to nursing school, I’m too sick to have a job, most days I’m too sick to spend more than two hours not laying in bed.

But I don’t tell them. I carry on with my lie. I let them live in the world they are comfortable in. You know that world where a 23 year old girl gets to live her life, without an illness that is often times debilitating, with no fix in sight?

It’s been a rough 48 hours, I lost count of the number of times I have vomited, the number of times I have thought “should I go to the hospital yet?” But I still have to function in the world, I still have to show up for the people I love.

Who am I?

Who am I?

I am Kaytee, I have a wonderful husband, the best family, and the cutest doggy on the planet. I am a student, a wife, a daughter, a sister, a dog mommy. I am also a health and fitness enthusiast.

I have been active since day one, I don’t remember a time where I wasn’t out running around until the street lights came on, or playing whichever sport was currently in season.

All was fine and dandy until eighth grade. One day in a weight lifting class I was heading over to the incline bench press and I got so warm, and then so dizzy, and before I knew it I was running to the bathroom. I don’t really remember the trip to the bathroom, I just remember waking up with my fitness teacher sitting by me on the bathroom floor. I must have thought the symptoms were a flu coming on or something, but I never threw up. I just continued to tell my teacher I felt “really weird.”

This was right before Christmas break. I spent all of Christmas break in my bed drinking gatorade and reading ever single Twilight Saga book from start to finish. The month was full of doctors appointments, mono tests, thyroid tests, blanket antibiotics to treat “whatever this is”.

About a month and a half later, I found THE doctor. The one who I give full credit for my being here today. He didn’t solve me, he didn’t cure me, but he listened to me, and treated what he could.

I was depressed, suicidal, and had an eating disorder. He put me on an antidepressant specificly used for the treatment of depression (duhh) but also Bulimia nervosa. From the middle of January to about May I had weekly or bi-weekly check ups and everything was going okay. I was able to make it through most of the day at school with no problems, and was beginning to feel a little more upbeat. However, I had this unshakable dizziness and I felt constantly fatigued.

Blame it on depression… Everything was because of depression, or a side effect to my medication. I figured; I can handle this. I feel well enough to get through the day, I have most of my energy back, these dizzy spells are just something i’m going to have to deal with. So I blamed it all on depression and went about my life. I had to make some minor adjustments, but my quality of life good through high school.

Now we get to Freshman year of college. Fall semester was just fine, I was adjusting to living away from my parents, I had a full time job (80 hours a week actually), worked through most nights (I got a few hours of sleep on an air mattress), and managed to maintain a 3.00 GPA throughout the first semester. Come the end of Spring semester; the dizzy spells were TERRIBLE. Most of the time that I stood up, I would black out. I finally went to quick care, thinking maybe it was just a really bad sinus infection or something.

WRONG. The doctor at quick-care asked me if I have ever been told I have seizures? I was like “no, why would you say that, I just black out. That’s nothing like a seizure.” He encouraged me to see a neurologist, I told him he was crazy. A few months later I was driving to Boise and had what I now know to be an absent seizure (still wasn’t convinced) I thought that my gas pedal had gotten stuck, because all I remember is my car suddenly going 90 mph.

Still not realizing I was having seizures, I started a new job as a CNA. One day at work, I completely lost vision. My now husband brought me to the ER, and they told me I had a seizure, took my driving privileges away, and sent me to a Neurologist. The neurologists results were “inconclusive” STORY OF MY LIFE. But hey, at least I was allowed to drive again.

So do I or don’t I have seizures? Honestly nobody knows.

So obviously there is still something wrong with me. I can’t stand up without almost falling over. My amazing primary care doctor was back in town (he had a five year stent at a hospital an hour away). And he sent me to a cardiologist. The cardiologist diagnosed me with POTS; which is short for Postural Orthostatic Tachycardia Syndrome. I was so relieved. I thought “finally a diagnosis that will get me towards feeling better!” Man was I wrong. POTS is a diagnosis of “we know what’s wrong with you, but we can’t do anything about it.” Great….

Supposedly medications for lowering blood pressure can help regulate the issue with my irregular heart beat. When I was diagnosed, all they knew about POTS was that it made your heart rate go wild upon changes in orthostaics (laying down, sitting, standing). This treatment did the oposite of work, this treatment tried to kill me. I already have chronically low blood pressure. Low blood pressure + a medication to lower blood pressure DOES NOT equal success. It made me so sick, I could hardly get out of bed. I was promptly taken off that medication and told “eat a high sodium diet, drink lots of water.” And that was all they could do for me.

Fast forward through four years of dragging ass, almost passing out when I stood up, and feeling like overall sh*t. POTS now affects every organ in my body. I have terribly painful IBS along with ovarian cysts and endometriosis. I am always tired and always sick. Going to school for 4 hours of the day literally wipes me out, when I get home from school I have no energy. I can’t eat hardly anything, i’m gluten free, soy free, dairy free, corn free, egg free, nut free. I have to soak seeds before I can eat them. I live off of protein shakes (shameless insert about how SHAKEOLOGY is keeping me alive).

I have seen two neurologists, two Ob-Gyns, a cardiologist, I have tried metabolic medicine, and functional medicine, I am working with a GI, and at the end of this month I see an endocrinologist.

BUT none of that is the reason I am here. I am here to share how I have helped myself through the day with fitness, nutrition, and the practice of healthy, mindful behaviors. It’s up to me to improve my quality of life, and I hope I can help improve the quality of yours!

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