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.

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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