Yesterday I pushed myself to do more and to do different. I decided to be a 22 year old for a few hours, I just ignored the fatigue, took the pain meds, and went to back to back movies (7-11:30pm) with my sister, who didn’t think I could stay out late anymore. It was a gift to both of us to be able to spend that time together, just enjoying doing something that was so out of the norm.
Usually I sleep through 60-80% of movies anywhere we watch them, our basement, my room, the movie theater, other peoples houses… But last night I worked hard to stay awake, and I did a stellar job. My POTS/dysautonomia leaves my body unable to pump blood to my brain when I sit down for too long, so I fall asleep or pass out even if I’m loving a movie or having a great conversation with someone; but usually, if I move around or take a walk I start to feel much more human again and stay awake for at least 10-20 minutes 😉
My family asked me if I really had energy for this, and here is what I told them,
“No, I don’t have the energy, but this isn’t about energy. This is about desire and determination.”
Sometimes I have to accept my symptoms, accept my situation, and make a choice to push past all of the exhaustion, pain, nausea, and sensitivities so that I can remind myself and those around me that I’m still me, and that there are still things out there, outside of my “safe zone” (aka my house and my room). Watching the world go on without you can be a very strange feeling, it’s like watching from an outside view, looking down on the life I thought would be mine and watching others continue on without me. The world doesn’t wait for anyone.
Recently I’ve been hearing a lot of “nothings” from doctors; some literally don’t have anything to say, don’t answer emails or calls or anything, others telling me they can’t take on my case or I’ve exhausted the options they can offer. It’s a lot of “keep you comfortable” and “manage symptoms.”
After so much of the same, I’m so tired of doctors and meds and tests or treatments that no one actually thinks will work. I want to live. I want to experience my youth, I want to really feel alive and I want to cross items off of my bucket list.
I want to travel and see incredible sites and take countless photos. I hope to visit all of the girls who I’ve met online, the ones who have helped me through these years of illness, and I want to meet new people, and fall in love. I want to get rid of these tubes so I can swim with dolphins and scuba dive, get as close to my mermaid dream as possible.
I have a lot of goals, and I may never accomplish all of them, but they make for some happy thinking & I never pass that up. 🙂
I may be sick, I may be a professional patient, but I’m also a person, but sometimes I feel like less than that when doctors, nurses, or insurance agents treat with disrespect, have biases against me before even seeing me or getting to know me, or neglect my physical or mental health because I am a challenging, serious case on the inside and a young, blonde, smiling 22 year old on the outside; invisible illnesses, especially in young women, often lead to many instances of mistreatment from medical professionals.
I’m almost never late to appointments. I have never missed, skipped, or forgotten an appointment. I email doctors with updates, questions, and reminders so that I can keep things going as efficiently as possible. I fill my meds, do my feeds, and try pretty much every alternative therapy suggested. I treat doctors with respect, no matter what. Not to sound stuck up, but I truly can’t think of much I could do to become a better patient, but honestly, that’s not my job in all of this. I am the patient, and I pay for these doctors to help me.
The idea of “doctors working for me,” is something I had never thought of before about a year ago when someone said it to me after I had a doctor say some hurtful things to me; I don’t work for the doctors, they work for me. They have no right to treat me with any less respect than they expect me to have for them or than they would have for another doctor, a friend, or a family member.
In fact, they should be treating me with great respect even if I’m not being extra outgoing or outwardly friendly. I don’t get paid to be sick. I don’t want to go to the doctor all the time. I’m often traveling hours to see them for just 10-15 minutes and they’re often not even able to help me or offer me anything new, so if I’m upset or not talkative, it’s just out of disappointment and frustration with my situation.
But doctors have chosen to be there, to help people. They choose their specialty, choose where they work, what age they work with, and they get paid very well for what they do. But just because they get paid and because they went through medical school doesn’t mean they are better people or even that they know what’s right.
Having invisible illnesses is hard. Many of these conditions are rare and under researched, doctors in small towns and even doctors who work in highly respected hospitals but aren’t specialized just don’t know these conditions. I’ve been to endless doctors who can’t pronounce the names of my conditions, don’t know what they are or what the symptoms are, or think they know and insist they know but are downright incorrect.
Sadly, a lot of girls with conditions like mine deal with doctors being rude or curt, abrasive, neglectful, biased and judgmental, and even abusive. Whether doctors are just having a bad day or whether they think they can speak to us in hurtful ways just because we are young or pretty, appear healthy, or smile and laugh like “normal” people and aren’t bald or in wheelchairs 100% of the time, I don’t know, but I do know that their actions and words can affect us for a long time.
When we are treated so poorly by people we have put our trust into, it isn’t just upsetting for a moment, it often affects our ability to put our trust into doctors and the medical system in general. Sadly, the only way someone like me can live at all comfortably is by seeing a multitude of doctors and working very hard to find treatments and medications that help minimize symptoms. We’ve put our lives in the hands of these people, we literallycannot go on without them. There is no excuse for them to treat us poorly, but when they do, we lose trust for them and we lose what faith we had in the system.
Doctors can go home and take off their white coats and eat dinner with their families, never having to think again about how that day went or what a patient said or did, but we go home and have to deal with the consequences of appointments for days, weeks, months. We rely on doctors and nurses and insurance agencies not just to be alive, but to have any comfort on a day-to-day basis. It’s not an option whether or not to have doctors or treatments, so if we lose one doctor, we have to work hard to find another one who is as good or better and willing to take on a tough case.
Conditions like mine mean you sometimes have to be both patient and medical expert, which is frustrating and exhausting. I don’t ask my doctors for magical treatments or cures that aren’t out there yet, but I do ask them to treat me with respect and dignity. I’m a person, not just a patient.
Well y’all, I have some great news. About time, right? Let me start by saying that I’m thrilled with this news. It’s incredibly exciting for me as well as for my family, but, I am writing this post and explaining this news to you because although it is wonderful news, and it is what I’ve been waiting for forever, it’s not going to be a walk in the park, piece of cake, cure all for me… it’s a complicated treatment that is not widely used for my condition but nonetheless, my best shot.
A couple of days ago I got the news that my IVIG has finally been approved, and not just for one dose, but for 13 rounds. We’ve waited over a year and seen 3+ specialists in order to make this happen, it’s been a crazy battle to get to this point. On Monday 2/19 I will have my first round!
IVIG is IV immunoglobulin therapy. Essentially it is meant to reboot your immune system and help alleviate or reduce the symptoms of autoimmune or immune conditions. For me, the catch is that I do not have the typical conditions that IVIG is currently used to treat. There are many trials going on with how IVIG can help different conditions, gastroparesis included, but there’s no FDA approval for IVIG as treatment for it yet. That said, this is my only viable option left and because I do have an immunodeficiency, I was finally able to get it approved.
Throughout this process I’ve heard a lot of “slim possibility,” “doubtful,” “statistically…” “honestly…” “be prepared for disappointment…” and all of the other phrases doctors use to tell you they don’t think things will work…
BUT, we heard someone say, “it’s worth a shot,” and here we are today, after a long fight, ready to start a new trial.
IVIG is something my family and I decided was our best chance for change. Not all of my doctors agree, but when do they ever? It’s not a treatment widely used for gastroparesis or EDS/Dysautonomia, but because my immune system is involved, there’s a chance my GI system could respond in some way to it. My motility specialist is the one who suggested it as one of my last 3 options for treatment; today, this is the only one of those three options that I have left.
We don’t expect miracles. In fact, I try not to make expectations at all. I hope it works. It would be incredible. But if it doesn’t, I don’t want to be crushed. I’ve been warned by doctor after doctor that it is likely not going to help, so I’ve pretty much got that in my head, but I also have my own hope and positivity in there thinking maybe this is going to be it. I’m not a blind optimist, but I do have hope. It may be hard for some of you to understand that combination of emotions and feelings, but I’m glad it is, because it means you’ve never had to be this sick, and for that I am thankful.
I wrote this update because I know you all care, I know you all want and deserve an update, but I also needed to share with you how this process is going for me. It’s not going to be an easy treatment. It’s not a miracle drug. It’s not a guarantee of success or relief. It’s a treatment that is extremely hard on the body. It has major side effects. It’s a long shot. But it’s my only shot.
IVIG is what I’ve been fighting for and waiting for for a year. I’m so, so relieved that the fight for approval is over, but that doesn’t mean my battle is over, it’s onto the next step now. My family and I have worked so hard for this; hours of phone calls, emails, paper work, doctor visits, denials, tears…what a journey it has been, and now the journey continues. It will take at least 3-4 months to see any results even if this treatment does work. All great things take time.
What I need in this time is for my support team to just be here for me. I will update if there are any improvements or changes, I will update on how the treatment is going and if I am having any side effects or complications, and I will do my best to post regularly so you know whats happening in general. Try not to set expectations, have no disappointment, no pity or sadness if I see no results, no explanations of why it hasn’t worked or reassurances about when it will, just be here for me.
All I need is love. Support. Laughter. Company. Friendship. Exploration. Care. Distraction.
I’m sick and treatment is hard and unpleasant, but I have my ways of coping and I am still a person and sometimes I just need to be Rachel.
**Happy Feeding Tube Awareness Week! This is the first new post, keep your eyes open this week for more posts including but not limited to : Tips for Tubies, a project update, New tubies: Products to start with and where to get them, more on my personal experiences, and a special video! It’s also a great week to buy a painting or send a donation to Newbie Tubie Care Packages, so click here if you’re interested in more information on that :)**
Next month, in March of 2k18, I will celebrate both my 22nd birthday and my 3 year tube-iversary. In March of 2015 I was in school at UVA where I celebrated my 19th birthday on March 8th and then was admitted to the hospital the next week with a blood infection from my central line, which was keeping me nourished and hydrated at the time. On March 24th I was again admitted to the hospital for surgery to place my first long term feeding tube, a GJ tube that went through my stomach and into my intestine where I get my feeds.
Although I’ve had gastroparesis since high school, I never could have imagined that my case would become so severe, leaving me with a feeding tube(s) that could be part of my life indefinitely, taking me out of school, and changing the way I was able to plan for the future. When I first got my tube, my doctors hoped it would only be for a few months or maybe a year if I was really struggling, but we had no idea that my “flare” was about to become my new normal. Instead of having a few months of worsened symptoms like I had in the past, I waited a year… and then another year… and now another year with no relief.
After I finished my first year of college my health was at an all time low and I wasn’t able to go back to school in the fall. My tubes did help my nutrition, but I never tolerated them well enough to get in as much feed as the doctors wanted me to, never enough to gain a lot of weight back. It’s been three years on medical leave now; my classmates, my friends, will graduate in the spring and I won’t have had another day to be there with them.
My parents and I worked so hard to find answers, anything that would bring even partial relief; our original goal was that I could go back to school, but after a year and a half of incredibly severe symptoms and the addition of 3-4 new diagnoses, our goals became things like, “getting Rachel out of the house more… helping get her able to volunteer or babysit sometimes,” and at my worst times, it’s just “getting Rachel more energy and less pain/nausea so she can get out of bed…” From the Fall of 2015 through Summer of 2016, I saw at least three different specialists who are top in the nation on my conditions. Sadly, there are only a few medications that are used for gastroparesis, most of them not even FDA approved, and they can have nasty side effects.
My last (and current) motility specialist is at the Cleveland Clinic and is considered to be one of the top specialists in the world on gastroparesis and dysmotility conditions. He did extensive testing to find a root cause of my GP and to try to find a treatment option, but what we found out is that my gastroparesis had gotten so bad that the numbers were matched with only one other girl’s testing as the second worst cases in CC records. I actually met the other girl online and have been able to talk to her and compare notes and, sadly, she’s still struggling in huge ways—she could use your thoughts/prayers.
Because my dysmotility (lack of motion, “motility”) has moved into my intestines and almost stopped my colon’s motion (colonic inertia), my options are very limited. I had one viable treatment option that we were told was a long shot at working, but it’s my best/only shot. We have been working for over a year now to get IVIG (IV immunoglobulin therapy) approved, it has been a long and tedious attempt that has involved 3 doctors and multiple infusion centers, lots of disappointment, and plenty of reality checks. There isn’t a great chance of it working, but it’s essentially my last major treatment option, so it’s what we have to keep fighting for.
Last year around this time, a few months before, I started having a lot of trouble with my GJ tube flipping up into my stomach leaving me unable to do feeds. Because it was happening 2/3 times a month, I was getting malnourished and dehydrated and had lost even more weight—my all time low. It was decided that I needed to have a jtube placed, one that goes straight into your intestine, not through the stomach first, but it took us awhile to make that happen.
It took me almost another year to get that surgery done due to my malnutrition and some complications with doctors and finding a surgeon who would take on my case, but on October 18th I had surgery for my new feeding tubes. There were some complications during surgery as well as in the week post-op, and recovery was long and extremely painful. But, during that time I came up with my plan for my new project, Newbie Tubies, and now that has come to life and is such a wonderful part of my life.
My first mini- art show; this is both a pain distraction therapies and my #1 fundraiser for Newbie Tubies.
My first package sent! Now I’ve sent over 20!
I may not have ever been able to imagine my life turning out this way, but I have learned, been inspired, shared my knowledge, and seen things in a new perspective. I couldn’t do it without the support of my family, I’m so, so blessed to have parents who are willing to do anything needed to care for me and help me be comfortable.
Being a tubie is just a part of me now, and I’m more than happy to share all I can about that for Feeding Tube Awareness Week. <3
Another year gone, already?! I’ve read and heard so many people saying that time is flying by or posting long facebook posts about all that was accomplished or what they learned in 2017 and what their goals are for the new year. And yes, sure, I could do the same, but in all honestly, my illnesses have changed my perspective on the passage of time and watching one year pass and another begin just isn’t as huge of a celebration anymore.
My life has changed drastically over the last 5-6 years and I’ve grown and learned so much, but I’ve also lost many parts of myself and so many aspects of my life that used to create that excitement and significance of a year passing.
I’ve been out of school full time for three years now, and by leaving school I also left my friends, my social life, and my education behind. At the time, I had no idea I was leaving for an indefinite amount of time, and now I’m watching my friends graduate, some of them have even gotten engaged (s/o to my first year hall-mates who just got engaged to their high school sweethearts <3), and many of my high school classmates have even settled down and started families.
Before leaving school and having my illness progress into an extremely severe case, I had so many goals and plans for my life, but being dependent on feeding tubes and a hickman line (a long term IV in my chest) for nutrition and hydration and being dependent on my parents for everything from setting up feeds and sorting my daily meds to driving me to appointments and staying endless nights in the hospital has really changed things for me.
I no longer look at the long term or “big picture,” but instead focus on getting through each day. Some days I just focus on getting through each hour, trying to survive the time between each dose of nausea or pain medication. My every day life can get monotonous at times when I am home bound or bed bound, sleeping more than I’m awake, awake only to take medications, go to the bathroom, start new feeds, etc. The days blur together when you do the same things every day and have little to look forward to. Although many of my days are full of pain and discomfort, its always possible to find something to laugh at, smile over, or appreciate.
Instead of looking back on what has gone on in the last year or thinking of what I can accomplish in a new year, I continue to focus on each day and every small beauty and accomplishment that occur in that day. Although I don’t have any huge plans for my future, I do have dreams and goals, and I’ve gotten really good at appreciating the small things in life, if you take time to look, there’s something positive in every day.
It has been way too long since I’ve posted. I’ve been struggling with symptoms affecting both my mind and my body and I just haven’t had the brain power/energy to finish a post! My illness is a physical illness, but it stems from my brain and my autonomic nervous system so I have both neurological and physical symptoms, many of which are “invisible” to anyone who doesn’t know about them.
I’ve written before about how my Dysautonomia causes severe brain fog—this includes problems with word finding and sentence formation, short term memory loss, trouble focusing/short attention span, and a lot of day dreaming/zoning out. Right now my Dysautonomia is flaring because I had a virus and I’m not getting the full 2 liters of IV fluids I am supposed to get because of a back order that is in place due to the hurricanes that took out a major supplier in Puerto Rico.
Not only is this flare causing me to have extreme brain fog, but I’m having other symptoms as well such as falling asleep or losing consciousness while sitting or standing due to lack of blood flow to my brain. This is a common problem for those with NCS (one of the types of Dysautonomia that I have) but it is not only terribly annoying and embarrassing, it’s debilitating and limiting because I can’t drive or plan anything that involves standing or sitting for too long, and it’s hard to be around other people because I can fall asleep mid-sentence or even worse, in the middle of someone else’s sentence! Let’s just say I won’t be going on any first dates any time soon 😉
Because of my flare of Dysautonomia as well as an increase in severity of my migraines, I also struggle with overstimulation or hypersensitivity to sound, noise, touch, and smell. Overstimulation is something that a lot of people would think of in relation to autism or ADD in children, but it’s something I, as an adult, struggle with every day. Any loud or repetitive noises or bright, colorful, or flashing lights can send me into a terrible episode of overstimulation that leaves me in full body pain and spasms as well as with a migraine that doesn’t respond to medication. Some days my skin hurts to the touch like there’s a bruise spread across my whole body. Before my diagnosis my family thought I was just crazy and picky about noises, but now we know my brain really just can’t handle a lot of these noises, lights, etc.
Winter is always a challenge for me because I deal with intense pain flare ups due to the cold, lots of migraines, and my GI system always gets even worse than normal once I hit November/December, this year just seems to be throwing a few curve balls at me with the neurological symptoms being so significant on top of the normal flares.
Luckily I’ve learned how to adapt and work around most of these symptoms so I’ve still enjoyed getting ready for Christmas and our Christmas day was lovely and (relatively) peaceful. It’s so nice having my family home for an extended break—having company and my care team here makes things both easier and much more fun J
I hope to start being able to use my brain a little more so I can update on some more things and also share more about my Newbie Tubies Project and how I’m hoping to get that going by the New Year!
Its really easy for my mind to go towards thinking about how my illnesses have stolen any predictability about my future; how they took me out of school, have forced me to accept that I may never have my “dream” job or may not even be able to work a “real job” at all. For someone who loves to plan and always wanted to know what was next, living in such uncertainty can be daunting. I fear living a life lacking companionship and never getting to fall in love or find my true soul mate, but then I’m reminded that my illnesses have brought to light so much in myself that I never would have discovered if I hadn’t gotten so sick in the first place.
Instead of focusing on the things I likely won’t be able to do, I’ve started to consider all that I CAN do. I’ve discovered so much about myself that I didn’t even know was there; I have new passions and I’ve discovered talents I had no idea were hidden within me until I got sick and I have a new understanding and a new level of empathy both for the people and the world around me.
Ive strengthened relationships with my loved ones and lost many people who weren’t able to stick by me through my trials, I’ve broadened my outlook and see things in such a new and brighter perspective, and I’ve found passions that give my life more meaning than just being the “sick girl,” no matter what my body has in store.
Although I can’t eat, I’ve developed a relationship with food through cooking meals for my family. I love creating new recipes and trying new techniques with home made goods. Some people are shocked by my love for cooking, but it’s something I’ve always loved and now it’s a way for me to “enjoy meals” with my family.
I’ve rekindled my passion for photography and developed a love for painting– this one I don’t think anyone would have expected. I’ve never been the artist of the family, and although I can’t draw anything, I do have an eye for color, and I’ve found some painting techniques that work for me. Because I’ve discovered these passions and because people (not just my parents 😉 ) started buying my paintings, it has given me hope that even if I can’t graduate from college or work as a full time behavioral therapist like I had hoped, maybe there’s something more out there for me.
I’m blessed to have a community here at home as well as through chronic illness support groups online that support me in every way they can. I’ve had so much support from my local community and I’m so so thankful for each and every one of you. I also have a truly amazing family that does everything from help me with medications/treatments, drive me places, and help with any other around the house/medical things I need and they also help me be able to follow my passions and set me up for success. Not everyone in my situation is so lucky.
Chronic illnesses are exhausting and isolating, they take away so many parts of our lives that we use to identify ourselves. If you’re going to survive it with some sanity, you have to make a choice to not let your illness be the only thing that defines your life– it is always part of what defines you, but if you don’t have other distractions and passions, you’ll just about lose your mind.
I was listening to a Christmas CD tonight while I was painting and I was struck by the lyrics of one song in particular. I don’t know what everyone else thinks or feels about this season (and really any time of the year), but I’m a strong believer in the power of love and this song just really hit home for me.
The song said, “The story of hope and joy and peace…. let anger and fear and hate disappear and let there be love that lasts through the year.” (Alan Jackson- Let it be Christmas)
Maybe it’s just because I’m exhausted and emotional from post surgical pain, medications/side effects, and insomnia, but this just made me stop what I was doing and really ponder and appreciate. Christmas is my favorite time of the year, but it’s not always a picture perfect holiday. We’ve dealt with years of illness, our fair share of (extended) family drama and arguments, tears on Christmas Eve, and anything else a “normal” family (hah, normal?) may see. However, in the end, we come together and we celebrate love and we spend time together and that’s what matters.
The day after hearing that song, my good friend posted this amazing post on Facebook about love and family and again I was just struck with how much I related to that post and how again the power of love was shining through and someone else was recognizing and sharing that. I’d like to share that post with you…
” People always ask me how I stay so strong and how I’m so positive. Well, I’m not always strong and sometimes I feel like nothing will ever be okay, but I’ll let you in on a little secret. I was born into a family of warriors. After each punch life throws at us, we help each other up and we battle it together. No one fights alone and every one of us has scars of courage to prove it. At the end of the day, our love outshines any cloud of darkness. Together we can do anything through love.”
My family and I (parents and sisters) have been through hell and back just trying to stay on our feet through each “punch”, each trial we’ve been through, but the key to that is that WE go through each trial. Together. I am never alone through this long and challenging journey I am on because I know my family will never leave my side. Sadly, I am one of the lucky ones; I’ve seen first hand that not everyone, not even every family member, works that way.
Love is one of the most powerful emotions a person can experience. It can make you do crazy things, but it also brings about the best things in life. To love unconditionally and to be loved unconditionally is one of the best gifts you could ask for, and you rarely find that outside of your family (until you get really lucky 🙂 ).
Families should always share unconditional love– parents, spouses, siblings, grandparents, cousins, everyone included! Life is short. Life is full of ups and downs, arguments, differing opinions, heart break, annoyances, cold shoulders, and regrettable moments, but it’s also full of laughter, hugs, big smiles, great photographable moments, tons of joy, milestone moments, and most importantly… LOVE. So why do we waste so much time being angry? Holding grudges? Arguing over the past? We should be together celebrating, making memories, being joyful, sharing happiness and love.
This Christmas season I urge you to love unconditionally. Find forgiveness in your heart for those who have wronged you. Don’t ever take being treated for less than you deserve, but always remember that life is short and relationships with loved ones are precious. Let only positive thoughts into your mind and share those positive thoughts with others; always try to focus on the good, there is so much of it.
Spread love. Laugh endlessly. Find your happy and share it with your loved ones.
The past two weeks have been even more challenging than my “normal” for both my body and my mind. I had surgery two weeks ago to place a new/additional feeding tube and we ran into some challenges and now I am trying to heal and recover.
I’ve had to spend more time in bed since getting home from my surgery because I’ve been unable to move much on my own. For the first week I couldn’t sit up, stand, walk, sit down, go to the bathroom, brush my hair, or do anything for myself. Being 100% dependent on other people is really hard, regardless of the fact that I was already disabled and very dependent on my parents for so much even prior to surgery.
I have to admit that the first week or so post- surgery is all a blur. There was lots of pain, many doctors, a painful car ride home (or two), a lot of sleeping, medications, ambulance, pain, another ambulance, an awful ER, pain…. But what I do remember is that both of my parents were right there by my side the whole time. There was never any talk of hiring a nurse to do the hard work or asking another family member or close friend to come help so my parents could go back to work. Every day I had at least one if not both of my parents there taking care of me, no complaints or mention of using up their sick days.
For the first many days I slept 20+ hours a day with the help of pain medication, nausea medication, and sedatives, which all together helped make me more comfortable. After my ER trip on Monday/Tuesday I stopped taking the heavy pain medications because they delay gastric emptying so I also stopped sleeping and instead started having major insomnia again. By Wednesday/Thursday I was starting to walk on my own and eventually getting out of bed by myself, too. Although I run out of energy quickly and my pain levels are still severe, every step forward is worth a celebration.
Having such a supportive and involved family made all the difference for me; I didn’t have to worry about keeping up with meds or finding a good nurse or anything because my parents and sister were on 24/7 “Rachel Duty” for as long as I needed them. We also have an incredible community that supports me by sending cards, flowers, and gifts but they also support my parents at work and through facebook and texts/calls of support and well wishes. Being the parents and care takers of a young adult as sick as I am is no easy task and it’s extremely important to have that support.
Surgery is tough, but recovery is hell. Waking up each morning in major pain and knowing it’s not going away isn’t easy on anyone physically or mentally, but each small improvement or sign of progress gives me hope. Life is precious and every day that your body is functional and pain free is a gift; I encourage you to take advantage of every day and live life to the fullest, always follow your heart and do more of what makes you happy. Find joy in every day.
I’ve been dealing with dysautonomia since I was a teenager, really even longer before my diagnosis in high school. It started out with shortness of breath and heart palpitations before moving into full on syncopy and fainting spells and eventually complete autonomic dysfunction. Today, although my dysautonomia is in many ways managed better than it has been before, it still affects my body and routine every day.
Although my fainting spells have been minimized by doing twice-daily saline infusions, if you look deeper you find that my dysautonomia is still very much present. I struggle daily with common symptoms like dizziness, accelerated heart rate, and fatigue, but I also have symptoms that are less talked about.
I struggle with temperature regulation, being unable to stay warm if I go anywhere with a temp under 65-70 degrees, even if I’m bundled up and only there for a couple of minutes; this includes grocery stores, cars, outdoors, and my own house during the winter. Something as simple as changing my clothes can send my body temperature drops as low as 91 degrees F – hypothermia is 95 and below. I joke about my “hibernation” during winter, but it’s partially true, being that cold and unable to warm up is not a fun –or safe– feeling. On the other hand, if I’m fatigued or talk too much (no joke), I run low grade fevers and have to put myself in a “time out” to let my body rest and recover.
I also struggle from severe adrenaline rushes. My blood work shows high norepinephrine and dopamine levels which you would expect from someone who is overly excited or even scared, maybe from sky diving or being in a high speed car chase? Well, I get them from standing up or over exerting myself. When your body has to work extremely hard just to keep you on your feet, it sometimes goes into overdrive. These adrenaline rushes either leave me hyper during the day or up all night, but either way, I’m exhausted and weak when they’re over.
My dysautonomia has also contributed to my digestive tract failure and my chronic pain. Although I have other conditions as well, these are all comorbid and interact with one another making it harder to treat. I’m on 24/7 nausea medication and daily pain medication as well. I struggle with daily migraines and occipital neuralgia. I rely on tube feeds and IV fluids to keep me nourished, hydrated, and able to stand up without passing out.
Although there are many other symptoms I struggle with, these are just a couple that are currently having a big impact on my life.
Dysautonomia is an umbrella term for a multitude of conditions and needs more research and awareness. There are way too many people suffering from this condition who deserve treatments and a cure, but we have none.
To each of you reading this, thank you. Please continue to read, share, and educate others on these conditions so that one year we can write about the cure.