A bit of an Update

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!

Thanks for reading, Happy Holidays!

Passion Over Predictability

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.

 

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

A Day with Dysautonomia

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.

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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.

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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.

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

 

Desensitized to The Diagnosis

Yesterday I got a new diagnosis. But in all honesty, a new diagnosis doesn’t phase me much anymore. When I was 16 I got my first diagnosis, Postural Orthostatic Tachycardia Syndrome (POTS), but I had no idea that 5 years later I would have more diagnoses than I can count on both hands.

In 2016 I was diagnosed with Ehlers Danlos Syndrome, a genetic condition that affects connective tissue and collagen in your body. For me, this diagnosis explained a lot. I had already been diagnosed with Dysautnomia/POTS/NCS as well as Gastroparesis and generalized dysmotility in my colon and intestines. I had been struggling with unexplained chronic joint and nerve pain and I finally had an answer; although EDS wasn’t an easy answer and it meant I will likely never be completely free of illness, I finally had answers.

You probably won’t understand this unless you’re chronically ill, but after receiving that diagnosis, the ones that followed haven’t been surprising to hear or hard to accept. EDS has a lot of co-morbid conditions, and as mine has progressed and as I’ve seen more specialists, I’ve collected a nice array of conditions. Because I know my illness and understand what it can cause, I’m prepared for all of the co-morbid conditions it can bring on.

It’s never good news when I get another diagnosis, but I like to think that a diagnosis simply means we are moving forward towards treatments and answers, it doesn’t actually change anything symptom wise. I’m the same as I was before the diagnosis, I just have more answers and another syndrome/condition on my records. Usually a diagnosis actually brings me more relief because doctors actually start treating a conditions once it has a label and is no longer just unexplained symptoms.

I don’t mean to minimize the severity or seriousness of chronic illness; every illness I have I take very seriously and we treat each to the best of our ability. But after being sick for so, so long and being diagnosed with so many things, there is a desensitization to the process. Maybe it’s a protective mechanism, a coping mechanism, or maybe it’s just because it becomes your life, but just because I’m progressively ill doesn’t mean I have to let each diagnosis set me back.

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.

A Word From Many: Ehlers Danlos Syndrome

As part of Ehlers Danlos Awareness Month I asked a large group of women with EDS to describe their journey with this condition in one word. Whether it be their most common symptom, an adjective that explains how their life has been affected, or an emotion that describes what EDS means to them, I just wanted to hear what EDS is to each person. I took all of these words and put them together to share in hopes that they will show how brutal EDS can be to so many people, but also to show the incredible strength that it brings to it’s sufferers and as a reminder that no one fights this alone.

So again, these words come from over a hundred different women– not just me! Many of the words were suggested by more than one person; the most commonly used ones are in the largest print. I don’t share these seeking pity, but because those living with EDS live complicated lives full of so many symptoms, emotions, and stressors that go unseen. Awareness month may be over, but every day we will continue to fight for better treatments, more awareness and understanding, and we will continue to fight for our lives.

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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❤