Coming back.

I think it is time to come back to the blogging world. I had this idea to start from scratch. All the old stuff on this page seemed like it was so far in the past that I didn’t want to acknowledge it anymore. But then I changed my mind. Healing is a journey, and every piece of it remains relevant. Some days I don’t want to acknowledge what is in the rear view mirror, and that is okay, but I think it all needs to stay.

I started this blog with a different intent than I have now. I started this blog trying to carve my place in the world, while “working” as a fitness coach. But life definitely had other plans for me than that.

I still prioritize movement to treat my POTS, but man I am far from “fitness”. The last year of life brought me a steady and rapid decline. But also more healing than I ever imagined possible.

More details on that soon, this is just a quick little entry to explain almost a year long absence on this blog.

Alternative Therapy #1- Dr. Z

Let’s talk alternative therapies…

I’m going to start from the top, with the very first alternative therapy I tried once I got to Portland. I had heard about this doctor from my Chiropractor back home, and it just so happened that we ended up moving to the place where this doctor is.

We got here in April, and my appointment with Dr. Zielinski was May 15th I believe. He was the first doctor of any sort that I sought out here. (All of Dr. Z’s information is listed at the bottom of this page).

His initial appointment is $650, and before you go freaking out about the cost of that, realize that it is a 3-4 hour appointment. He does a ton of testing, and all of that testing gives you SO MUCH information. So even if all you ever do with him is get that initial testing, you will learn a lot about your condition. The testing is pretty intense. It is hard to explain but it is basically a bunch of tests of your eye movements with many different variables. After your testing he will show you the data. So you know it’s not a hoax or anything, like you will actually watch what your eyes do during each session and see for yourself.

Anyways all those tests tell him certain things, and each test has a baseline for what the average healthy persons movements should look like. From there he will do a physical exam and a neurological exam, and some other things that will make you kind of roll your eyes and feel a little bit stupid (they are useful I promise). And then after all of that he develops a treatment plan. Sometimes people just need to come in for a few sessions and they will be fixed, sometimes people (like me) need what they call an Intensive where you come in from 9-5 everyday for two weeks.

I only did one week of intensives because that was all I could afford. I benefited greatly from that one week, and was very diligent with my at home therapy there after, so it worked for me. However, I do believe the benefit would have been greater had I done the full two weeks.

Aside from the Intensive, he ran all sorts of labs on me, and we experimented with different supplements that theoretically should have been helpful to me. I tried a lot of them, but in the end I found only Glutathione and a Nitric Oxide supplement to be helpful enough to be worth the money.

He ran all sorts of labs trying to track down what was happening with me aside from what my eye movements showed, but we found nothing definitive through those labs.

Anyways, about the intensive, I basically went in there with two incidents that had caused my POTS. One was the onset when I was 14, and the other was taking a softball to the head when I was 17. From the softball incident I had some major post conclusive syndrome that was giving me insane POTS symptoms. When I went to see Dr. Z I could hardly drive, I had no idea of my own orientation in space, I was nauseous all the time, I vomited daily, my eyes and my whole body were constantly fatigued, and I could not keep my eyes looking straight, I had a very visible lazy eye, and I had zero balance. .

The intensive was the worst week of my life you guys. It was so hard on my body because I was so messed up. I had to drive myself because my husband couldn’t take a week off of work to chauffeur me, and we don’t have a support system here. Everyday I barely made it home, like I honestly was not safe to drive. I didn’t even make it till 5 pm everyday, I had to quit at 3 pm. I would get home and I would be asleep the minute I walked in the door, the only reason I would wake up would be to run to the bathroom and puke my guts out from the nausea. Think drunken bed spins on steroids and that’s how I felt. I have honestly never felt so terrible in my life.

The things they do in the intensives are not physically demanding, I was hardly ever standing, and didn’t really do anything but move my eyes but it was so hard on my body. Everyday when I woke up I wanted to quit, but I kept going, and I made it through the week. After that week I crashed. I was in a pretty bad flare for a week or two, just sleeping a lot, because my body needed all the rest it could get to recover.

Once I got out of that flare though, the whole world was different. I could drive without hitting curbs, I had enough balance to do yoga, I stopped falling down stairs, I stopped walking into walls, I was noticeably less fatigued, my heart rate chilled out a ton, and my nausea dulled down a lot. I believe this therapy completely cured the post-concussive factor of my POTS.

I was not fully cured by this therapy, because my illness has so many layers to it and eleven years of traumas and undiagnosed ailments, but I would do it again a million times over. It was worth every penny I spent, and Dr. Zielinski’s care is exceptional.

 

Practitioner: Glen Zielinski, DC, DACNB, FACN
Practice Name: Northwest Functional Neurology
Location: Lake Oswego, OR
Website Link: https://northwestfunctionalneurology.com/

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.

Exercising through exercise intolerance?

“Exercise intolerance” sounds like something someone would make up in order to get out of working out. “I can’t I have exercise intolerance.” But it is legitimately one of the symptoms of POTS.

So what does that mean? It means that my body, literally displays every message to me that I should rest. I get dizzy when I exercise, my heart rate gets out of control, and I get pale and sweaty. UNTIL I get over the hump?

I think everyone can relate to that place in exercise where you start and you don’t want to be there, but then you get past it and you’re super motivated and everything is smooth sailing.

Well for someone with POTS, you may literally feel like exercise could kill you that day, but then you push play and your blood starts to flow and your heart rate normalizes, and the effects of exercise last long after exercise itself. For most people that is a good thing because calorie burn, weight loss, increased metabolism, and all that. But, for a person with POTS that is a great thing because, that means lessened symptoms for a bit of time.

The best form of exercise for people with POTS is low impact exercises in which you can do at your own pace. So, although taking a cycling class may seem like the most popular form of exercise and something everyone should do, a person with POTS should probably steer clear of a cycling class, instead maybe design your own cycling workout and pause when you need to!

I have found that the best form of exercise for me personally is weight lifting. It increases blood flow to every area of my body, increases heart rate slowly, but does not create a dramatic spike, and increases muscle mass which should overall increase blood circulation. I have also found yoga and pilates to be good “POTS approved” workouts. Stretching and foam rolling are also also excellent ways to increase circulation and can be added on after a workout, or stand alone as your activity for the day.

At the end of the day the most important thing you can learn to do is listen to your body. Know what is beneficial and what is harmful to you as an individual, and what works best for your body. This goes for everyone, whether you have POTS or not.

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.

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