I want to take us back to the beginning of my chronic illness journey. It all started when I was a small child but they pushed it off and said it was just asthma and didn’t explore anything. Then when I was 10 (in 6th grade) things started to get worse, by 12 was when my life drastically changed. I had to move to homeschooling because I couldn’t even leave my bed to go to the bathroom. I was blacking out, passing out, constantly dizzy/lightheaded, cyclical vomiting and much, much more. It got to the point that my moms significant other had to sometimes carry me to the bathroom/car/ER/etc. I went to many doctors and had a lot of people brushing it off saying things were “all in my head” and that I “just didn’t want to go to school because I was bullied” but my mom fought for me and doctors finally started paying attention. I was first diagnosed with IBS (Irritable Bowel Syndrome) and cyclical vomiting, then at age 14 I was hospitalized for 5 days from being very sick, high heart rate, passing out, blacking out, etc. They thought that I had Mono, come to find out, it wasn’t that and all my other tests came back normal. I then got sent to a Neurologist and that is when I was diagnosed with POTS (Postural Orthostatic Tachycardia Syndrome.
Now, don’t let the name fool you, it does not only mean I have tachycardia when I stand, it is much, much worse than that. POTS is actually known as a form of Dysautonomia, which means that it is an Autonomic Nervous System disorder, it is rare and many doctors don’t even know about it, especially in 2010 when I was first diagnosed. POTS is also considered an autoimmune disorder. For years I had to go untreated and had to “just live with it” because they didn’t even know how to treat it. Even now, many doctors don’t even know about it, they still barely know how to treat it and are continuing to do tons of research. The nervous system is complicated and I’m told it is going to take a lot of time to truly figure out this illness. The Autonomic Nervous System (ANS) is the part of your nervous system that you body control unconsciously for example my POTS affects my: digestion, blood pressure, heart rate, pupillary response, breathing (respiratory) rate, body temperature (such as my body not being able to regulate my temperature), metabolism, electrolyte balance (I have to eat 4x the amount of salt a normal person is allowed to every day), production of body fluids, emotional responses, sleep issues, etc.
My POTS is the genetic, hypovolemic (reduced blood volume), neurogenic (peripheral denervation loss of nerve supply leads to poor blood vessel muscles, my brain is one of the reasons I pass out) type, my mother has POTS too. I am told by my doctors that with all my comorbidities, I will likely have POTS for life. There is no cure but sometimes teens grow out of it, but if I was going to do that I would have grown out of it by now. These are just some of the issues I experience. I have been all over Wisconsin and Illinois looking for answers and help. I have had 6 surgeries (such as removing my gallbladder and appendix experimentally, but actually, it made things way worse for me). I have had 8 colonoscopies and endoscopies, so many MRI’s and CT scans that I lost track, 3 one month long heart monitors, 10 echos, over 20 ultrasounds, and so, so many more tests in which I have done multiple times because anytime you go to a new facility, they want to redo the tests themselves. I’ve had so much radiation pumped through my body I am surprised I don’t glow or have superpowers by now. I have been poked with needles so many times that at 24-years-old I had to have a permanent Port placed because of all the scar tissue and not being able to access a vein. After traveling all over Wisconsin and going to places like Milwaukee Children Hospital, Froedtert, UW, I only left with more questions than answers. As my life went on, these illnesses started getting worse. Even with my current treatments I am still having trouble living my life, I’ve never really been able to work. I tried multiple times and it always ended up in a hospital stay and doctor recommendation to stop working. All I would do is work part time and then lay in bed and recover, that was my life. Here are some other diagnosis that I have gotten along the way all the way up to 24-years-old and they aren’t even done fully diagnosing:
IST (Inappropriate Sinus Tachycardia): this is also a form of dysautonomia. With IST I would be sitting down or just laying in bed and my heart will randomly skyrocket to 160+ and I sometimes pass out (however POTS also causes me to pass out do to blood pressure drops) I also experience palpitations, weakness, chest pain, shortness of breath, and dizziness. This is also hard to treat because of my 80/60 low blood pressure and the fact that medications that will keep your heart rate down will also make your blood pressure go down.
IBS (Irritable Bowel Syndrome) w/ Gastritis: an intestinal disorder that causes pain and other issues that I’m sure you don’t want to know, but I’m sure you also already know what I am talking about (haha).
Fibromyalgia: this is characterized as musculoskeletal pain that is through the entire body, it also causes fatigue, sleep issues, memory/cognitive issues, and mood issues. Researchers have also said that fibromyalgia amplifies painful sensations through affecting the way your brain processes pain signals.
Obstructive Sleep Apnea: this pretty much explains itself. When I got a sleep study done it was discovered that I have a 42% (out of 100%) sleep efficiency, which as I’m sure you assumed, is not good. Not being able to sleep well also causes my other illnesses to flare and it's like a never ending cycle.
Restless Leg Syndrome: another thing found in my sleep study, they found that I have 10 leg movements an hour, this also disrupts my sleep and is not a pleasant feeling in general, sometimes it's like pins and needles in the legs.
Chronic Migraines: these sometimes last me days, for example, I recently just went through a 6 day straight migraine.
Chronic Fatigue Syndrome (CFS):
Mast Cell Activation Disorder: a super complicated autoimmune disorder that causes me to randomly have allergic reactions to things I'm not allergic to and many, many other things. Its too complicated for me to write a short blurb about it.
Medullary Sponge Kidney: a very rare, incurable and untreatable kidney disease.
Chronic Vitamin D Deficiency:
Hypoglycemia: low blood sugar.
Hyponetrimia: low sodium.
Hypovolemia: low blood volume, this goes along with my POTS and is a big reason behind needing infusions 2x a week and still ending up in the ER in hypovolemic shock which risks my life.
Besides these issues, I also have a lot of things that are still undiagnosed that my current doctors at Mayo Clinic are trying to figure out (currently looking into other stomach issues). Also looking into hEDS and Sjorgens. I also have some wacky thyroid issues that are still left unanswered. I know that I somewhat explained my symptoms, but I want you to truly know what I go through on a daily/weekly basis:
Body aches, muscle pain, nerve pain, intestinal spasms, heightened nerve sensitivity, random heart rate spikes (150+) even when resting, brain fog/cognitive issues (sometimes I even get to the point I feel like someone has drugged me), road map looking legs and arms (forgot the term for this but it has something to do with my blood vessels), violent hiccups, itching, nasal issues/idiopathic congestion, heart palpitations, heart flutters, nausea everyday, vomiting (sometimes I have to go days/weeks without food, currently talking to doctors about an NJ tube), fatigue (I have never felt rested in my life), lightheadedness, dizziness, balance issues, cold sweats, tremors, twitching, heat intolerance, syncope (passing out/losing consciousness), near syncope, black outs, memory problems, mental confusion, pins and needles in my legs, joint pain, hypermobility, circulation issues, random pupil dilation, by body cannot regulate its temperature correctly, random abdominal pain to the point of falling to the ground and screaming, sometimes feeling out of breath even when resting, chest pain, nerve pain, GERD, digestion issues, random blurred vision, random drops in oxygen levels, air hunger, blood pooling in legs and stomach, hot/cold flashes, low blood pressure, face flushing (face gets hot to the touch and I feel like I’m burning up), sporadic anemia, sensitive to chemical smells (the smell of chemicals can cause me to pass out), sensitive to hormones (I can’t take any hormones, I can’t even handle my periods because they cause my POTS to flare and make me very sick), insomnia and other sleep issues/disturbances, overactive senses, allergic reactions to lots of medications/foods/sun and more symptoms that are mostly TMI that I’m sure you’d appreciate me not telling you. Plus add depression on top of all this.
Lastly, we are still looking into something called Acute Intermittent Porphyria. My mom and I both have a blood test that showed it, so that was enough for her. This is something that my mom and I are suspected to have and something that we are also thinking my grandma and my great grandma might have had too. My mom and I are currently working with the American Porphyria Foundation on next steps to take. AIP is a rare metabolic disorder that is characterized by deficiency of the enzyme known as porphobilinogen deaminase (PBGD) which results in the accumulation of toxic porphyrin precursors in the body. Long story short, my blood becomes toxic to my body.
A day in the life of me:
This is actually embarrassing for me to share because I feel like living like this IS embarrassing because I’m only 24 and this is how my life has been. Everyday I wake up, most days with nausea and tachycardia right when I wake up. This makes getting out of bed already so difficult. Living with my wonderful fiance (who works crazy hours) and my amazing mother (who as I have already mentioned, is also disabled), I am the main caretaker of the house and I can barely complete the simple tasks needed to. Everyday I have to break up what is needed to get done because it is impossible for me to shower, do laundry, clean the house, do dishes, etc, all in one day (which a normal person would have no problem doing these things on top of also working). Not to mention I have to do all these things sitting, pushing through my other symptoms and taking lots of breaks or my heart will skyrocket and I will pass out. Don’t even get me started on how hard it is just to go grocery shopping. I will go grocery shopping and then not be able to leave my bed for the rest of the day. If there is something I have to do, like an event or holiday going to visit my fiance's family, I have to literally not do anything a couple of days before and then I need a couple days after just to recoup and get to my “manageable” symptoms, which is still a lot of symptoms, but after years you just get used to it. Get used to the vomiting, the pain, passing out or having to randomly sit on the ground in random places, just all the symptoms, it just consumes your daily life so you have to get used to it and push through even when you feel like death.
Currently I take 25+ pills a day, 5+ different vitamins, I have to go to the infusion center to get 2L of saline fluids 3x a week. I get 9 hour long albumin infusions 1x a week. I am in multiple types of physical therapy such as OMM, dry needling, lymphatic drainage massage, normal PT to work on strengthening my heart. I get Occipital Nerve Block shots in my head. I'm in regular therapy too because when you live like this, it’s needed. I have a special diet that I am on that helps with inflammation, balancing my blood sugar, migraines and some of my POTS symptoms. I also have to eat many small meals a day instead of 3 regular sized meals because it makes my POTS worse because of all the blood that pools to the stomach (mostly my heart rate and blood pressure, not to mention digestion is a part of the ANS so that's also messed up). Granted, with my almost constant nausea and vomiting, I’m lucky to eat enough to take my pills 3x a day. I need to take 5x the amount of salt a normal person is allowed to have in a day, I get this through salt pills, electrolyte mixtures, drinking pickle juice and having to oversalt my food. I also have to drink a 5 to 10 liters a day of electrolyte mixture (I can no longer have plain water). I also have a wheelchair because there are times where I cannot possibly walk or I will end up paying later for walking too much so I can’t push the envelope. Without these things I would be in the emergency room all the time. I basically live my life on the edge not knowing whether today is going to be the day I end up in the ER or in an ambulance.
This is where you guys come in! If you guys donate to me, this is what you are donating for! I have done a lot of research on service dogs and out of all the places I have picked someone who breeds and trains dogs and has experience in training dogs specifically for POTS patients. She will have another litter ready by next summer and the cost of the dog, plus the training, and vet bills is going to be around $15,000, if I make more than this all the money will be put aside specifically for my service dogs expenses.
These are things my service dog will do that will help my life tremendously:
They will give me blood pressure and heart rate alerts: blood pressure being very important so I can sit down before I pass out, my service dog can also help me from pushing myself too hard and prevent me from ending up in an ambulance (which just happened to me 8/24)
Mobility support: sometimes I need to use a wheelchair or walker because I am so dizzy and lightheaded that I can’t even walk straight so the dog will be able to pull me in a wheelchair and also brace work which I can hold onto a handle on their vest to keep me sturdy.
Retrievals: this is SO important especially on days that I can’t even leave bed and find myself crawling to the bathroom. The dog will be able to get my meds, water, remotes, etc. It also helps if I drop something (with POTS bending over causes me to be syncope or near syncope and my head starts pounding, I black out and I am super out of it for a minute).
Syncope response: the dog will respond to me passing out and do things such as roll me on my side, licking or pawing to try to wake me up, and brace me and help me get back up, keep me safe while I am passed out and get help if needed.
Leg elevation and deep pressure therapy: with POTS I have a lot of blood that pools into my legs and the dog would help me with that when needed too.
With having a service dog I will also feel more comfortable and be able to actually do things myself like get some groceries and run errands. This will help me become more independent and give me some control back. But most importantly, this dog will help with being able to live my life safely and comfortably.
Thank you so much for taking the time to read this small snapshot of my life story (if I told you everything we would be here for days lol). If you can donate, I would appreciate that so much. If you don’t have the money to donate that’s okay! You can still share my story and spread the word. It would truly mean the world to me. I know $15,000 is a lot of money, but this will change my life for the better and my doctors also agree and since I can’t work right now, fundraising and asking for donations is all I have.
I will start making a blog about living with chronic illnesses as well as education, tips and tricks for those diagnosed with POTS and have no idea where to start. If any one has any tips or tricks on raising money or organizations where I might be able to get help, please let me know!
Here is a link to my GoFundMe, however since they take a percentage if you want to donate straight to my Venmo, my Venmo is KaylaRenee1922