Recovery: The Real Challenge with Surgery

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.

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Kevin needs his new tube placed!
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Baxter alerting me.

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.

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3 tubes?!

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.

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Our one and only trick or treater 🙂 My favorite visitor!
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Always blessed and spoiled by my parents’ coworkers!

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.

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Mom sleeping in the ER.

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.

Xoxo

Why I Continue to Avoid TPN as a Young Gastroparesis and Generalized Dysmotility Patient

I’m about to hit my 3 year mark of being tube fed. I never would have imagined that I would be 21 and fed through a tube in my gut, but it isn’t my last choice as far as alternative nutrition options go.

I’ve been asked and offered many times to go (back) on TPN, or total parenteral nutrition, which is nutrition that goes straight into your veins. This option gives you full nutrition—protein, fats, vitamins, etc—and can be tailored to your exact needs.

Because my intestines and colon are delayed (they don’t process food or feeds at a “normal” rate), I don’t get in enough feeds to meet my calorie goals and I haven’t been able to gain back any weight. My BMI is considered extremely low and some of my doctors would really like me to go back on TPN. For those who don’t know much about TPN and for those who have never had to make the choices I have, I’m going to try to explain to you why I – as well as many of the other girls in the same situation—want to avoid TPN for as long as possible.

Although TPN is complete nutrition, and it probably sounds like a great option to many of you reading, it comes with many risks. TPN requires you to have a central line or a long term IV that goes deep into a large vein and then straight to your heart. These can get infected easily and lead to sepsis, which if not caught in time can be life threatening.

While tube feeding is much more natural and forces your GI tract to at least try to function, TPN leaves the GI tract to shut down completely. For someone with dysmotility (lack of movement), this can mean there is little to no chance of returning to tube feeding or eating if another treatment option becomes available after they start TPN.

TPN also puts you at a higher risk for glucose abnormalities and liver dysfunction. The damage to the liver can be so serious it can cause you to be unable to run TPN or even require a transplant if not caught in time. While on TPN, you are required to do weekly blood work, blood sugar monitoring, and weigh ins. TPN can also cause volume overload, metabolic bone disease, and reactions to lipids (fats) such as nausea, headache, back pain, sweating, and dizziness.

So there are many, many undesired side effects from TPN. But aside from side effects, TPN is scary because for those of us with gastroparesis and intestinal dysmotility, TPN is our last option. To go on TPN means to admit that our intestines are no longer functional enough even just for tube feeds. It means we can’t eat, we can’t tube feed, and we may not return to either.

Yes, some people go on TPN and come off of it able to tube feed or even eat again. Some people only use TPN to supplement their tube feeds or oral intake. Everyone’s case is different and TPN helps so many people live a more “normal” life because it does provide full nutrition; it can boost your energy and help you regain strength and muscle that is lost from malnutrition. TPN saves the lives of many starving patients with gastroparesis and generalized intestinal dysmotility.

That said, it doesn’t make it any less scary. Losing the ability to eat is one of the most confusing and complicated things you can imagine. Going from eating orally to being fed through a tube is one of the strangest and hardest adjustments I’ve had to make, but knowing I could lose the ability to feed even through a tube in my gut is even harder to accept.

TPN is a miracle for so many people, but it is also a nightmare for many of us. It’s what can help us live, but also what can put our lives at risk. I’ve been on TPN before, and I fight my body (and sometimes my doctors) every day not to go back to it. You can’t understand what it’s like to go through this until you’ve been the patient, but I hope that everyone—doctors, nurses, family member, friends—can try to understand how hard it is on the patient to make these decisions and all someone needs during that time is support and love.

Learning to Live in Today

This week, while the class I began school with started their fourth year of college, I started my third year of medical leave.

People often ask me if it makes me sad to see posts about college or to drive through grounds when I’m headed to the hospital, but mostly what I feel is disbelief. How has it been so long? Does life really move on so easily without me? Will I ever get to be “normal” again? Do I even know what that means and could I return to it if I tried?

At a young age we start to understand that our lives follow a guided path; sure, everyone’s is different and we all stray from that path at times, but in general, it is set up for us. We grow up being loved and cared for, we learn right vs. wrong, we go to school and hopefully graduate. From there, you either get a job or “further your education,” aka more school. Some people get married, some have children, some do neither. The order isn’t the same for everyone, but we all make plans and in general, most people end up following some variance of “the path,” as I’m calling it.

Well, my path was altered in high school. I got (really) sick when I was about 16. It took me years to get real answers, in reality, I’m continuing to seek more answers to this day, but since getting sick, my life has been anything but “normal.” I spent time on homebound from high school, I did one year of college before withdrawing on medical leave, I’ve lost countless friends because of these illnesses, and I’ve lost any firm perspective on what my future may hold. However, I’ve also grown and become a stronger and wiser person.

Do I wish I were starting my fourth year with my friends right now? Of course. But I’ve learned that we can’t always predict where we will be in four years or four months or even four days…

You don’t have to fit anyone else’s mold. Yes, go to college; study whatever you want! Or, take a gap year. Travel. Volunteer. Be an actress, an athlete, an architect, a doctor, a musician. Be a stay at home mom, a stay at home dad. Be you.

Most importantly, don’t hold back. Splurge where ever you can, big or small. Do all you can to live in the moment and enjoy every possible second. Today, right now, is all you have. Now don’t go spending your family’s life savings on lottery tickets or a trip to vegas using the excuse “Rachel told you to,” but buy yourself something you’ve been wanting when you get your paycheck, just because you earned it. Take your parents or your family out to eat just because they deserve it. Do something just because it makes you or someone else smile, do it just to make memories.

Life is beautiful, but it is short and unpredictable. Throw caution to the wind and always follow your heart.

Battling Gastroparesis: Happy Awareness Month!

In December of 2013 I was diagnosed with gastroparesis. Like majority of people, I had no idea what that was or what the diagnosis meant for my future.

When I got my diagnosis I was given minimal information about the condition, and because I didn’t know what it was back then, I didn’t know I wasn’t getting the full picture. I was told I had delayed movement in my stomach, it wasn’t emptying food like it should be. They told me gastroparesis is a chronic condition but since mine is what they call “idiopathic” or without findable cause, it was likely post-viral and would go away within a year or 18 months.

This discussion, my original gastroparesis diagnosis, lasted only minutes, and I was left to figure out most of it on my own. My parents and I left that hospital thinking I just had to get through this flare up and then it would hopefully go away for good. I had no idea on that day 4 years ago just how much gastroparesis was going to change my life.

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Some more info about GP– symptoms especially! And yes, that is my tube and a donut tubie pad!

Since my diagnosis in 2013, I have had countless tests and tried endless treatments, medications, diets, and therapies. Gastroparesis is extremely difficult to treat and there is no cure. In 2016 we found out that my dysmotility (movement disorder) had moved into my intestine and colon as well, so that became a major complication. Luckily at this point my parents and I had become experts on my conditions; after my original diagnosis we started to learn how to do our own research, we joined online support communities, and we went to see specialists who could give us more information about my conditions and prognoses as I was diagnosed with more conditions down the road.

The journey you go through when living with gastroparesis and generalized dysmotility is extremely taxing on both your body and mind; it’s exhausting and disappointing to try and try again and often get little to no relief. But, we have to keep trying in hopes that one day we will find the right treatment and hopefully a cure.

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As part of awareness month, I want to give you a glimpse at what it’s like going through testing and treatment with gastroparesis, so I’m going to list some of the tests, procedures, and treatments I’ve tried over my time with GP.

I was originally diagnosed with an Upper GI series, an endoscopy, and a 90 minute gastric emptying scan. Since then, I’ve had 3 more 4 hour emptying scans, multiple endoscopies, countless EKGs, lots of ultrasounds, endless x-rays, a breath test (SIBO), esophageal manometry, anal manometry, smart pill test, CT scans, MRIs, and so much more. And these are only the tests that have to do with GP—not my other conditions.

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I’ve tried physical therapy, cognitive behavioral therapy, acupuncture, dry needling, chiropractors, and essential oils. I try keeping up with walking and core strength and I keep a positive mind set—no one can tell me I’m sick because I’m depressed! 😉 I’ve even read mindfulness books and watched documentaries on how to “heal your body,” although I wasn’t 100% sure about that one!

When I was able to eat, I’ve also tried a lot of diet adaptation. I was on the BRATS diet, low FODMAP diet, gluten free, dairy free, a gastroparesis diet, a liquid diet more than once, and I’ve been on both TPN and tube feeds. As of now I am completely dependent on my feeding tube for nutrition and my port for IV fluids daily.

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I stared with a picc line for TPN, then I had an NJ tube for a trial run with tube feeds before quickly deciding to have a GJ tube placed surgically in March of 2015. Since then, I’ve had my tube changed out over 26 times in IR due to either clogs, having it flipped into my stomach, or just needing a new tube (every 3-5 months). I also had a port a cath placed in August of 2016 and have that accessed 24/7 for fluids and nausea medication.

I won’t even list all of the medications I’ve tried because that’s just a ridiculous number and I don’t think you or I have the attention span for that. But you name a motility agent, a nausea med, a non FDA approved trial drug for GP, or pretty much anything used to control symptoms or promote motility or hunger and I’ve almost definitely either tried it or discussed it with my doctors and ruled it out as an option.

 

Over these (almost) four years I went from being able to manage my symptoms with a specialized diet and nausea medications to not being able to eat at all. Gastroparesis and generalized dysmotility are cruel illnesses, and paired with my genetic condition, Ehlers Danlos Syndrome, they’re relentless and grievous. My condition has progressed to a very serious level and I’ve tried most of the options available to me.

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Learning to embrace my medical devices 🙂 there should be no shame or shyness towards life saving devices like tubes and central lines!

Almost a year ago I saw my motility specialist at Cleveland Clinic, a man who is considered to be the best of the best, and he gave me three options. We’ve ruled it down to one option, but sadly insurance isn’t thrilled with it. 9 months later and we are still fighting for it. But we won’t give up. Gastroparesis won’t win this fight.

Happy Awareness Month! Keep your eyes out for more posts from me and others as we try to spread awareness and work our way towards a much needed cure!

Xoxo

R

 

A Battle With The System: Fighting For Treatment

Nine months ago my motility specialist gave me three treatment options. My digestive tract paralysis had progressed from my stomach into my intestines and colon and there just isn’t much they can do for that.

Option one– a specific medication –was quickly ruled out due to risks with another condition I have and the third option is not doable either, so we were left with one option.

Our one treatment option was IVIG therapy, or IV immunoglobulin therapy. This is a treatment that focuses on rebooting the immune system and can sometimes help reset some of the issues with the central nervous system. It’s used to treat immune deficiencies and other conditions that can lead to a weak immune system. For me, the goal is to boost my system in hopes that my digestive tract will be positively affected. There are no guarantees and it’s only about a 50/50 chance that it would make any difference at all for me, but it is our best and only real option right now.

It’s been nine months since we put the prescriptions in for that and I’ve been denied by insurance twice. My illnesses aren’t on their list of conditions that require IVIG for treatment and each round of IVIG costs $10-15,000, so it’s not easy to get approved for patients like me.

That said, this is my only option for treatment that may help me improve, not just keep me comfortable. Even if all it does is help me tolerate my tube feeds better and have less pain or nausea, it would be a huge victory. This is what my doctors think I need. So being denied the opportunity to try it is really upsetting; sadly, we see this happen a lot in the chronic illness community.

Our medical system is a money making business, so a lot of medications and treatments take pre-authorization, out of pocket co-pays, repeated appeals, and some are not covered at all. But for those of us with severe, chronic and progressive illnesses, this can make it hard for us to live any semblance of a “normal” life.

I am so thankful to have good health insurance, but the hoops I have to jump through and the delays in my care are extremely frustrating at times. My parents and I spend hours each month calling the insurance agency and calling doctors and pharmacies to advocate for the treatments I need. I’m lucky to have people who fight for my care when I’m not strong enough to do it myself, not everyone is that blessed.

If our doctors prescribe us a medication or treatment option that they think is vital to our health care, insurance agencies should not be so quick to deny it. The lives and well being of patients should be the first concern of every part of our medical system.

Adventures of a Tubie

Have you ever had to make a decision between what may be smart or practical vs. what would make you happy or what would be fun? People often make these choices in small ways every day when it comes to choices about what’s for dinner, whether to study or go out with friends, what to wear, etc. One of the biggest lessons I have learned in my journey with chronic illnesses is that life is short and sometimes it’s worth a little bit of impracticality if you’re just in need of some fun.

I spend a lot of time taking care of myself and majority of the time my health comes first. I have a lot of doctors appointments and I spend anywhere from 16-20 hours a day hooked up to my IV pole on various tubes for infusions and feeds. I take countless daily and as needed medications and require a great deal of rest due to chronic fatigue and pain. That said, after a rough recent admission—which you can read about in a recent article here—my parents and I decided that I am in need of some fun.

I have some fabulous friends who live with similar health conditions that I do, but most of them live hours, states, and even countries away! Taylor is one of my best friends and she lives in Texas; she has two or three of the same conditions I have and has a feeding tube! Taylor came to visit me and our other friend, Macy, last summer and we had an amazing time! We have had two other trips planned but both fell through due to our health at the time.

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You’d never know each of us have tubes, central lines, and a handful of chronic illnesses! This time together was so precious.

Well, even though my health is not currently considered “good” or even stable, I’m going to go visit Taylor! I will fly to see her and spend a week with her in Texas! Considering most days I hardly leave my house right now, this is a huge undertaking for me, but it will be so good for my spirit. And although we are both in our early/mid twenties, Taylor and I are both quite sick and have similar restrictions so we will be good company for one another 🙂

I am so excited for this trip. I do have some anxiety about flying and traveling by myself and I know that I will need a long time to recover when I get home, but it is totally worth it. Although I can’t escape my body and my illnesses, I can take a small break from all of the stress that comes along with appointments, phone calls, insurance, etc. (or at least I can try!).

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Sometimes you just gotta pretend you’re a normal 21/24 year old and duck face it out 🙂

This trip does not mean I’m feeling better or I’m recovering, it just means I’m doing something that is fun and something that will make me happy. I’m taking time to be young and savor this part of my life as much as I can. We don’t have time to waste, so even if all Taylor and I do is watch movies and talk and nap, it is so worth it. Even if it takes me two months of sleeping when I get home, it is so worth it.

Don’t forget to choose the option that will make you happy sometimes, even if it may not be practical.

Thanks for reading.

xoxo

Happy Birthday, Mom!

I’ve always been told that I’m a lot like my mom. We are both strong willed (maybe stubborn), hardworking, and loving women. My mom is more free spirited and outgoing than I am and loves to be spontaneous; while I tend to like to have a plan, she’s always up for adventure. Although I’m slightly more “rational” as we put it, we both always look for the positive in the situations we are in and help each other hold on to hope.

I am so blessed to have a mother who not only went above and beyond in my childhood but who continues to care for me today– in my adulthood! Not everyone is lucky enough to have even half of that.

My mom goes above and beyond each day to help me and my sisters be as healthy and as happy as we can. She works a full time job and parents full time for 3 of us! Having a grown child who is as sick as I am is more than a full time job in itself, yet she manages a job and my sisters as well. Of course having a wonderful husband and father helps, too 🙂

Although my mom never planned for it, she has become my at home nurse. She overcame her squeamish side and learned how to change a port needle, prep feeds and fluids, handle all of my feeding tube supplies, deal with my fainting, and so much more. She’s incredible.

My mom is also one of the strongest women I know, both emotionally and physically! Neither one of us is great with expressing ourselves emotionally, but she’s been through so much yet remains so strong. She supports me and the rest of our family through everything and always advocates for us without hesitation.

I could go on and on about my mom and all of the amazing things she does, but this is a post to celebrate her birthday! So, happy birthday, Mom! I hope your day is fabulous. I love you so much. I wouldn’t be able to do this without you. Thank you for fighting beside me every day❤

My Little Sister

The day my little sister was born, two days after my 4th birthday, was one of the most exciting days ever – okay maybe just the most exciting I’d experienced so far in those four years, but that’s still pretty exciting. 😉 I loved dolls and dress up, so getting a baby to bring home—a real, live baby — was a dream come true!

I practically lived in Laura’s crib. I loved cuddling her and helping mom get her dressed, fed, and bathed. She was super exciting, even though she pretty much just slept, cried, ate, and pooped. (Sorry, Laura 🙂 ) I did, of course, have a little jealousy since I wasn’t the baby any more and I had to share everyone’s attention, but in general I loved the new baby.

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To the point, Laura’s all grown up now and today is her 17th birthday. I can’t believe what an incredible person she has become. If you know Laura, you know she’s full of spunk and passion. One of the things I admire most about Laura is that she is totally confident in who she is. She likes to be appreciated and recognized for what she does, but she doesn’t need approval from others to feel good about who she is. I wish everyone (including myself!) was that comfortable in their own skin. She also has such an incredible view on the world and always stands up for what she knows is right. Whether it is to a friend, a stranger, a teacher, or a parent, Laura always speaks her mind and she does so with great passion and articulation. She is brilliant with words and is strong enough to speak out—something else I, as a huge introvert, greatly admire about my younger sister.

Laura is beautiful both inside and out—she takes kick ass selfies, something I’ve always envied. 🙂 She is also full of compassion and love. Laura has grown up as the younger sister of a “sick kid,” which is an extremely difficult role to play. Since Laura was in middle school, she’s had to watch me be passed from doctor to doctor and grow sicker and sicker all while she is trying to live a normal life. The stress that puts on her is huge, but she handles it with such a great attitude.

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Because of my illness, my needs are often the priority in our family. My parents have to focus a lot of time and energy on me. They spend a lot of time taking me to appointments, helping me with medications and tube feeds, and doing other things that are required because of my health. Although my parents are incredible and juggle having both of us here at home so well, it is still really difficult on Laura. However, you hardly ever hear a negative word about this situation come from her.

Laura was supposed to be the only child left in the house when I graduated from high school 3 years ago, but instead, I got extremely sick (again) half way through my first year of college and had to come home. Since then, I’ve been at home and my illnesses have gotten progressively worse. For Laura, this means she has watched my health deteriorate over the last 4 years while she is just trying to make it through the crazy high school years.

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Laura has traveled to different states with me for doctors appointments, stayed with me countless days while I’ve been inpatient in the hospital, laid with me in bed when I was in too much pain to move, and literally picked me off the floor when I’ve fainted. She also regularly brushes and braids my hair when I’m too weak or tired to do it myself, she (and her boyfriend, Sam) pick me up or drive me places when I can’t drive, she gives me piggy-back rides to help me save my “spoons” (aka energy), and she is always looking out for me and making sure I’m as comfortable and cared for as possible. Laura is one of my biggest advocates and supporters through this crazy journey. She’s always spreading awareness and reminding people of how lucky they are to be able to eat or go to school or work when some people can’t do any of that because of illness. Laura has let this situation shape her into such a wise and mature person and I’m so proud of who she is becoming.

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Being the sister of a sick kid isn’t easy, but Laura is incredible and I’m so lucky to have her. Laura is often greeted with things like, “Hey! How is your sister?” or “Is Rachel feeling any better?” Although Laura knows why people so often ask about me, she struggles during my hard times, too. Being a loved one of someone who is so sick is extremely taxing, so I encourage everyone who knows Laura or anyone else with a sick sibling or child to ask them how they are and express interest in their lives before asking about the other person. Laura has a passion for animal rescue and regularly fosters dogs, she is a great artist and writer, and she loves her criminal justice classes and is looking forward to a career in that field. Laura is so smart and has such a great perspective on things; if you get a chance to have a real conversation with her, definitely take advantage of it.

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I’m so grateful to have Laura as my sister. Although my illness causes us all great stress and worry, it has also brought us closer as a family. Laura has become one of my care takers, my biggest support, and a best friend. Happy birthday, Laura! I love you to pieces!

Ehlers-Danlos Syndrome

Ehlers-Danlos Syndrome (EDS) is a group of genetically inherited connective tissue disorders. EDS causes a severe defect in the production of collagen, which is the part of the connective tissue is what provides strength and elasticity to major structures in your body such as your skin, joints, and blood vessels. EDS can range from being mild to being life threatening from person to person.

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EDS mama and nurse 🙂

Ehlers-Danlos Syndrome is considered a rare disease, and although I have the most common type, EDS type 3 or hypermobility type, there is still a major lack in research and funding. There are six different types of EDS, some more severe than others. There is no cure for Ehlers-Danlos Syndrome and very few treatment options.

EDS type 3 is diagnosed based on clinical evaluation and family history. Doctors look at joint hypermobility using a nine-point scale called the Beighton scale. I scored an 8/9 on my clinical evaluation, you generally need a 5 to be diagnosed, but it varies some. Other things they look for are easy bruising and scarring, stretchy and soft skin, subluxations and dislocations, joint and back pain, GI symptoms or bowel disorders, dental crowding, and postural orthostatic tachycardia. I have all of these symptoms and we found that my mom fits much of the criteria for EDS as well.

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My shoulder is in the process of sliding out of place in this photo, just because of how I was selfie-ing! Oops!

That’s a simple medical definition of EDS, but it is such a complex illness and causes daily symptoms and complications. In my case, we believe EDS is the underlying cause for many of my other conditions. It is likely that this genetic condition predisposed me to the autonomic dysfunction that led to Dysautonomia (POTS & NCS) as well as the failure of my GI tract. I have also been diagnosed with scoliosis, osteoporosis, and have suspected fibromyalgia that causes severe nerve pain throughout my body. My EDS causes severe joint pain and chronic back pain that often leaves me bed bound as well as constant subluxations and dislocations of my major joints such as my shoulders, knees, hips, thumbs, wrists, ribs, and collar bone. I rely on my feeding tube for nutrition and my port for hydration because my stomach and intestines/colon no longer function properly due to gastroparesis and generalized intestinal dysmotility.

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My feeding tube goes through my stomach and into my intestines so that I can bypass my stomach and receive nutrition.

Because I have low bone density (weak bones) and experience regular subluxations (joints popping in and out of place), I have to be extremely careful not to hurt myself. I can fracture bones much more easily than most and my skin bruises from things as simple as crossing my legs the wrong way or wearing boots for long periods of time. I used to be extremely active and adventurous and I loved to run and swim, but now I’m lucky to be able to take a short walk or do simple floor exercises a couple of days a week. My chronic fatigue syndrome leaves me in bed anywhere from 16-22 hours a day sleeping and resting and even when I’m awake I’m usually still just at home because of pain/nausea, daily migraines, and fatigue.

Ehlers-Danlos Syndrome has changed my life, just as it changes the lives of everyone else it affects. I have had to leave school and am unable to work due to high levels of daily pain, constant nausea, and extreme fatigue. One positive thing that has come from my diagnosis is the many friends I have been able to make from the online support communities that I joined once learning I had the condition. Making friends who are going through the same things that I am has been such a gift, even if most of them live in different states and even different countries.

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My first ever EDS friend! She also has gastroparesis and Dysautonomia/POTS just like me!

February 28th is rare disease day, so take time to be aware and spread awareness for rare conditions like Ehlers-Danlos Syndrome today. These conditions need more research, funding, and awareness so the millions of people living with rare conditions can move towards finding cures.

Upcoming Birthday

As my 21st birthday approaches (less than 2 weeks away!), I have been reflecting a lot on all that has changed this year and how crazy my journey with chronic illnesses has been. My life is so different from what I used to imagine it would be at this “milestone.” I never could have predicted the many things that have shaped me into who I am today, but I’ve made it another year and that’s something.

When I was younger, I always imagined my 21st birthday would be celebrated with food, friends, family, and of course, my first legal drink. I figured at this point in life I would be in college studying and living like a college student. I got one year in at UVA before taking medical leave; I am still working on getting back two years later. A part of me still feels like I am a first year at UVA, yet I see all of my friends getting ready to finish their third year! I can’t believe it.

This year, my illnesses have progressed to the point where I’m not able to intake almost anything orally, I have trouble even tolerating my tube feeds, and most days I spend much of my time in bed. My migraines make me extremely sensitive to sound and light so I get over stimulated very easily. I am 100% dependent on my feeding tube and my port for nutrition and hydration and I am on around the clock medications to try to control nausea and pain. My symptoms and lack of energy make it hard to plan ahead and make it so that I’m most comfortable just being at home.

My 21st birthday won’t be celebrated with food or alcohol. I likely won’t see friends or have any sort of “party.” My mother does like to try to be sneaky, so if you hear of any secret plans, feel free to inform me. I’m not a huge fan of surprises 😉  My birthdays now are usually a quiet affair celebrated with just my family. I don’t tell you this to complain, this is just how it is; for me, simple and peaceful is usually just right. Since I can’t eat and my energy levels are extremely low, I don’t require much. Chronic illnesses steal a lot from you, but they don’t have to prohibit you from having fun or enjoying special events.

Although my 21st birthday is not what I would have imagined it to be, and my life has taken some unexpected turns, I feel blessed just to be here and to have an incredible family here to help make the day as happy and celebratory as possible. My illnesses have taught me to be so appreciative and thankful for all of the small things in every day, and I know my birthday will be wonderful, even without cake or alcohol 😉