Rachel Burchfield

@positively-rachel | contributor
I decided that I wanted to conquer my chronic illnesses and use my experiences and my unique perspective to bring awareness to chronic illnesses and to support my fellow "spoonies" in every way I can. Writing was something I started partially for my own benefit, to easily update my support team and explain my different conditions, and then I decided I wanted to do more, so along came Newbie Tubies - my package program for first time tubies, and boy has it been a blessing sharing my knowledge and means with all of "my newbies."
Community Voices

My chronic illness is getting worse and worse. We have a couple weeks left till spring break, but my body is at its breaking point. How do I tell my mom that I want to drop out for the newt three weeks and continue after that. Everyone keeps telling me to push through but I have pushed to my breaking point and know my limits. Thank you so much.

17 people are talking about this
Marisa Boidi

How to Balance 'Letting Go' and Protecting Children With Disabilities

As a parent of a medically fragile child, you will need to make a lot of decisions. Some are much easier than others. The one I struggle with the most is letting my daughter out of her “bubble” to enjoy life. I feel a lot of guilt when thinking about this, because my natural reaction is to protect her, and keep her in a bubble. You see, a year ago I watched my daughter stop breathing and turn blue. By the grace of God, and the quick thinking of my husband and I, we were able to bring her back before paramedics arrived. I saw fear in her eyes as she gasped for air — in my mind I saw, “Mommy, save me.” This isnot something that just disappears from your mind one day; it becomes a fear that can haunt you forever. I’ve tried to bury the fear, not too deep though. Sometimes fear can be your ally too. So, I’ve buried it just enough to remember how fragile her life is, so I don’t become reckless — but also just enough for it not to hold her back from enjoying life. What was my turning point that made me decide to give in a little and let her live life? Before my father passed away, someone who fought a courageous battle of his own, he said one simple thing: “Let her live life so she knows what it is she’s fighting for.” Those words have stayed with me and I’ve thought a lot about it. My daughter is very much alive. She’s alert, she’s playful, she just wants to do what other kids do. There is nothing wrong with her cognitively. So, how do you deny her those things? Her life will be different and it will be hard, but I want her to continue to fight for it. I’ve realized that by keeping her in her bubble of safety, she will never experience the joys that make us want to fight for another day. It sounds like an easy choice and the right thing to do to, to just let a child live life. But when you have a medically complex child, the consequences of the decision you make can sometimes mean life or death. If your child could talk, what would they tell you? That they want nothing more than to be treated as a normal kid? Or would they say, “Be safe mom, I just want to spend my life in my room home with my family.” I’m sure they never want to go back to the ICU, which they have spent a lot of their life in. But if they are already enduring so much discomfort and pain, doesn’t it make sense to bring them the joys in life too? Some days I make decisions, where my fear stays hidden just enough so I will give her all life has to offer, because I will not let this disease define her or hold her back. And some days that fear finds its way back out, and I want to just hold her in her room and shelter her from the unknown. Some days, all we can do is our best. So I’m trying, hoping with each new day I can bury that fear a little more so can I continue to let her enjoy life. After all, I want her to know what it is she is fighting for.

Jes Pearl

Learning That Love Does Not Equal Fear

When we are young, we all have different ideas about what it’ll be like when we grow up and experience love for the first time. For some young people, they imagine it’ll be like Disney movies: being swept off their feet like the princesses, being saved by a prince. We may talk to our friends and family about it. Our parents might explain the feeling of “puppy love,” or that feeling like butterflies in your stomach for the very first time. I remember my own imagination as a young child. I have always been a bibliophile and because the world scared me, I would read books about the world to try and understand what the future could look like. From what I read, it seemed like being an adult and falling in love could be really beautiful. When I began to fall in love with the idea of love, I imagined who would tell me they loved me for the first time. I never expected it to be the person who did. He was 19, and I was 10. He whispered in my ear that he loved me; goosebumps rose all over my body and I was instantly frozen. It wasn’t what I had imagined and in that moment I thought, “so this is what love is.” Love must be bottomless fear and anxiety. If that was love, I didn’t like it. For four and a half years, I was told that no one would ever love me like he did. Love became a weapon against me and I had no way to protect myself. When you think love is abuse, that’s what you continue to be drawn to as you grow older. Someone would show a small amount of kindness and I would cherish those warm feelings, because I had learned I would start to be hurt eventually. It was just around the corner. I was right; the switch was always flipped at some point. One day I was the best thing in the world and the next, I was worthless and undeserving. No one else would ever want me, I was lucky to be loved by anyone and I should be grateful. Hypervigilance in your youth then becomes normal as you become an adult. Love is just purely terrifying. I would hear the words “I love you,” and instantly be ready for the fear to kick in at any moment. I just handed myself over to it since I knew no better. When someone did eventually truly love me, I hurt them. It was easier to push kind people away because it felt like they had a secret agenda, but I know now I didn’t recognize that the love I was being shown was the real thing, not what I was used to. Having someone abuse and control you can become addictive, and kindness is too foreign and incredibly uncomfortable. It becomes a pattern that is so hard to unlearn when it’s the default. It’s only been within the last year that I realized that everything I thought I knew was completely wrong when it came to my past, and especially everyone I had been in a relationship with. I loved my abuser and admitting that is difficult, but it’s the truth. He was there for me when no one else was; I had felt so alone and he listened and cared for me as a child. But I know now that my naivete was used against me, and he used my innocence to keep me silent. Thankfully, it hit me that I was allowed to be loved and truly let people in. Learning what love truly means when you are in your late 20s is not an easy task. It’s been painful to rip myself open, pick out all of the lies and rebuild my perception of how I should be treated and how I should treat the ones I love. It can feel like learning to walk for the first time: I’m unsteady on my feet and I stumble frequently. I have been so used to hiding to protect myself that the thought of letting the person I love see who I am — without my walls up constantly and not being on the defense — is so hard. The lessons I’ve learned may seem so small and insignificant, but they have been life-changing for me. I’ve learned to look someone in the eyes properly, which doesn’t seem like a big deal, but it’s huge for me because I always kept my eyes down. I’ve learned real connection for the first time. I’ve learned real honesty and communication. I’ve learned that vulnerability can be truly beautiful. But to do all of this, it only happened because I met the right person who could see through my façade. I don’t know how, when no one else could, but he has. Last year, I began to learn to love myself and put my son and my own needs first. I thought that was a difficult journey, but this one has been harder. But for the first time in my life, I am finally letting myself love without fear.

Katie Campbell

Don't Be Sorry About My Son's Feeding Tube

My son, Brayden, has had a feeding tube for the last two years due to failure to thrive and sensory issues related to autism spectrum disorder. My son can physically eat by mouth, but he refuses to do so. His sensory issues are severe, and he cannot even smell food without a reaction. We’ve been in multiple different feeding therapies, and several therapists have dismissed him stating there was nothing they could do for him, that he would need intensive therapy. Our doctor discussed with us placing a feeding tube multiple times since his autism diagnosis and the weight loss and feeding issues began at 18 months old. The doctor would ultimately decided against placing the feeding tube since he would drink the formula by mouth. However, at 4 years old, he began refusing the formula, and he began losing weight again despite every effort by the physicians, therapist, and us as parents. After multiple tests to ensure there wasn’t anything medically affecting his eating and all tests coming back fine, we had no choice but to place the feeding tube. He wasn’t getting the proper nutrition without it. I couldn’t sit by and do nothing when a solution was presented, so with the help of the doctor, we decided it was the best option for us. Much of the time when the feeding tube comes up in conversation, the response is almost always the same. I usually hear “I’m sorry” followed with a sympathetic look. My response to them is almost always the same as well. Don’t be sorry. I’m not sorry. Of course, a feeding tube wasn’t in our plan. Of course, we’d love nothing more than for our child to sit down and have a meal with ease, however, he’s growing and thriving. I was watching my son lose weight and seem to waste away before my very eyes. I was seeing him tire easily when playing, and I could feel his bones when I hugged him. My son was pale and was constantly getting sick. We’d tried feeding therapy after feeding therapy with no progress at all. I felt like I was losing my little boy. No, a feeding tube is not what I wanted for him, but it’s what he needed. It’s what we needed. It gives him the nutrition he needs when he cannot otherwise obtain it. It gave him back his life. It gave him back energy, strength, and it of course helped him put weight back on. It’s been a blessing in our lives. The feeding tube gave us our son back, and for that, I’ll never be sorry. So please, don’t be sorry for us either. Generally, the responses change once I explain what his feeding tube has done for our family. They see that even though it may not be an “ideal” method for feeding our little boy, it’s our method for feeding him, and fed is always best! Image via Thinkstock. We want to hear your story. Become a Mighty contributor here .

Spoonie 'Lingo' You Should Know in the Chronic Illness Community

New to the spoonie life? Are you the patient or a loved one/caretaker/friend trying to support a spoonie? We have a lot of chronic illness “lingo” that can be confusing to the “real world,” so I decided to create this list to help get some of these out there and easy to find! This list contains many of the common words and acronyms you will come across but I’m sure I’m missing something! If you have other words/acronyms I missed, comment and I’ll add them in! I plan to do so as things pop into my mind, as well ???? And off we go! 1. “Spoonie.” A chronic illness patient; a term based on the Spoon Theory, which aims to explain the level of fatigue we face as well as what simple, daily tasks can take energy from a “spoonie.” 2. “Tubie.” A term used in the chronic illness world to talk about individuals who are tube fed; not an insult, rather we use it about ourselves and one another all the time. 3. “Stoma.” The tube site; the area on your outer abdomen where the tube enters, used to keep it clean and comfortable as much as possible. 4. “Feeds.” The formula that goes through the feeding tube to sustain and nourish patients; “Time for feeds” is like “Time for supper!” except a lot less fun. 5. “ Tubie Pads.” Similar to gauze but much cuter; used to help keep the tube site clean, healthy and cute. 6. “Vent.” If you have a feeding tube that is in your stomach — G-tube, G-J tube or NG tube — you can “vent” it if you are nauseous or have air stuck in your gut (which doesn’t move). It is often done with a drain bag for gravity or a syringe for suction, which requires more caution – ick! 7. “ A central line (Hickman, port, or PICC line).” Essentially a long-term IV that is placed into a large blood vessel near the center of the body, most often through your chest and ending at the heart. Used for intravenous treatments like chemotherapy or intravenous immunoglobulin (IVIG), total parenteral nutrition (TPN), medications, IV hydration and so on. 8 . “ Brain Fog.” Cognitive dysfunction that comes with conditions like dysautonomia, Ehlers-Danlos syndrome (EDS), fibromyalgia and so on, and causes severe problems with word finding, on-the-spot thought processing, short-term memory problems, sometimes long-term memory problems, lack of mental clarity and trouble holding conversations. People often say they feel that way too — that it’s normal when you’re tired or it happens as you age — but if you felt the fog we feel as patients, you’d be very glad your fog is not what we experience. 9. “ Gastrointestinal (GI) Motility.” Movement of the digestive system and its ability to move anything in there throughout the gastrointestinal (GI) tract. When there isn’t proper movement, undesirable symptoms can come up and you can be at risk for conditions like gastroparesis. Gastroenterologists who specialize in these conditions are called “motility specialists.” 10. “ Flip/flipped.” If you have a G-J tube, you can experience a “flipped” tube. This is when the J-arm comes up from the intestine and into the stomach, where it doesn’t belong. To fix this, you have to have it rewired in IR. 11. “Tubie Friend.” A stuffed animal or a doll with medical devices to match your own — feeding tubes, central lines, oxygen mask, etc. These are incredibly comforting and meaningful for all ages. 12. “Button Tube.” Low profile feeding tubes have an extension that can be removed, leaving only the “button” when you’re not using it! The other surgical tubes don’t have that option, and we usually call them “dangler” tubes or catheter tubes. 13. Acronyms you may come across. NTCP: Newbie Tubie Care Packages. NP: Nurse Practitioner. PCP: Primary Care Physician. GP: Gastroparesis. POTS: Postural Orthostatic Tachycardia Syndrome, a type of dysautonomia. MCAS: Mast Cell Activation Syndrome. NPO: nothing by mouth, long-term or short-term, often just 24 hours or overnight before surgery, for certain procedures such as tube replacements, or even for fasting blood work. TPN: total parenteral nutrition; nourishment coming straight from an IV bag into your central line in order to stay nourished. Can be short-term or long-term and is used as a last resort for dysmotility/gastroparesis patients who can no longer tolerate oral intake or feeds into the jejunum. 14. Types of Tubes. Gastro-Jejunal tube (G-J tube): Through your stomach and into the intestines; has access to both stomach and intestines. Jejunostomy tube (J-tube): A feeding tube that enters straight into the intestine. This is the most complex and serious surgery out of the three surgical options, mostly used for those of us with severe dysmotility not just in the stomach, but also through the lower GI tract, small and large intestines, colon, etc. Hence, you cannot keep the J-arm of a G-J tube “down” due to the lack of movement/pull. Gastrostomy tube (G-tube): A tube through the abdomen and into the stomach directly, no lower access. Nasojejunal (NJ) tube, Nasogastric (NG) tube: tubes going through the nose instead of the gut; usually used for short-term help for babies, individuals hospitalized or trials for feeds before surgery for G/J/G-J surgery. If you have any suggestions for words/phrases I should add, let me know — I’m always happy to have opinions from others. Follow this journey, or find out about the Newbie Tubie Care Package Program, on the author’s blog.

Community Voices

A Letter to the GI Nurse who Accused me of Having an Eating Disorder

Dear NP,

You have committed the ultimate betrayal. For years I have

put my trust in you. You have helped me with medications, symptoms, side

effects, and feeding tube dilemmas. You have scheduled procedures, sent referrals,

made calls, and advised me through many trials. You were there when I was diagnosed with #Gastroparesis and you helped

me understand what that meant. You helped me find diets to try, medications

to avoid and ones that may help, and talked me through the endless

complications that come along with this condition.  You were there when my dysmotility moved into

my intestines, when I was diagnosed with EDS, when other doctors failed me. You

have been one of the few constants in my roller coaster journey with chronic

illness.

 

Now, you have failed me. I told you I didn’t want to be

admitted to the hospital. My tube has failed me and I want to wait until the

surgeons are ready to be admitted. I understand and appreciate your concern for

my health and wellbeing; I know my health is not at its best, but the hospital

is not a healing environment and I am more comfortable and safer (immunodeficiency!)

at home. My motility specialist okayed the plan that we discussed (waiting for

surgery and continuing tube feeds), so I was set. Although I knew this made you

worry, I had no idea you would take it so far.

 

After hearing that you called my home health nurse and my

parents, I knew you were serious, so we compromised and I came to the ER to be

evaluated. When I got there, the ER said they wouldn’t help me because I was supposed

to be directly admitted. That was the first red flag. Nonetheless, I went up

and was admitted. I started TPN just like you wanted. I cooperated. They

couldn’t fix my tube. I had to share a room. I was at high risk for infection

and my migraines were through the roof. But I stayed. I cooperated. I thought

we were all working for the same goal.

In the morning, things got really bad. They told me you had

told them I needed to be evaluated by psych for anorexia. Yes, anorexia. I was

shocked. I have a severe digestive condition and you want me to be evaluated

for an eating disorder? I’ve known you for years, how could you do this to me?

This is what I fear from new doctors who are uneducated on my condition and

don’t know me as a person, but you? My trusted, helpful NP? I’m floored, heart

broken.

Here’s a list of the things the psychiatrist had been told,

all of which are blatantly untrue:

1.

I had refused to be weighed at my tube change

earlier in the week.

a. I never refuse to be weighed. They don’t weigh

me at radiology appointments. If they had asked, I would have done it no problem.

2.

I have been “calorie restricting” at home.

a.

You told him I had only been doing half of my

tube feeds, which is true. But you told him it was on purpose, when I clearly

told everyone it was because I was only tolerating a rate of 50ml/hr and even

running it all day I can’t get it all in.

b. I suggested the new feeding tube (Yes, I

suggested placing a second tube in my gut for more nutrition—don’t think that

sounds like ) so that I can get more feed in. I’m doing my best.

3.

I refused lipids in my TPN (the fatty part).

a.I did not refuse any part of the TPN. I fully

expected lipids! I just did what they brought me. They didn’t add lipids, so I

didn’t do lipids. I don’t make the stuff!

4.

I waited 5 days to come in for my tube fix this

week.

a.This was the worst one! I called the morning my

tube flipped. You schedule the tube

changes. You made me wait 5 days.

 

I knew I would have no trouble with the psych eval because I

have nothing to hide. I do not have an eating disorder. I may qualify for

“severe ” weight wise because of how low my BMI is, but that doesn’t

mean I have it.

The psychiatrist listened to me and decided I was right, in his

words there had been a “miscommunication” and my weight was explained by my

multiple medical conditions. This was much more than a miscommunication, but as

a doctor at the hospital, the psychiatrist had to respect his colleagues.

#EatingDisorders are real and serious health conditions. No

one with an should feel ashamed; #MentalHealth is just as

important as physical health. It is so important to find help when you are

struggling with mental health. That said, my illness is physical, so to be

accused of doing it to myself and not wanting to get better is extremely

insulting and upsetting.

 

Being a young woman with a progressive, #ChronicIllness is

extremely difficult. I fight stereotypes and stigmas every day. Situations like

this are exactly why I have #Anxiety about hospital admissions and new doctors.

To have this come from you, the NP I have worked with and trusted for years makes it even more heartbreaking.

 

I hope you learn from this and never treat someone this way

again. Everyone deserves respect and treating the chronically ill with bias and

judgment is anything but that. I am a person. I work so hard fighting for my

health. I want to live, I want to find healing. I want my life back more than

anything. I deserve to be treated better than this.

 

This is the end of your path on my journey. I’m trying to

find healing and health and you are no longer a helpful tool in that task. My

health may be poor right now, and you may not agree with the plan that’s been

set up, but all I want is to be healthy again. I dream of eating huge meals,

returning to school, being able to run and swim, and no longer relying on

doctors and hospitals so much. All I want is good health; I’m sorry you can’t

see that.

~RB

 

 

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What the Opioid Crisis Is Like for Chronic Pain Patients

I think it’s reasonable to say that most individuals over the age of 15 living in the U.S. today have at least heard something about the opiate crisis. “Opiates are bad.” “Narcotics are addictive.” “They ruin lives and have a high risk for overdose.” “Opiates are a gateway drug and lead to use of street drugs and illegal self-medicating.” (5th-10th grade health class, yah?) That’s what we learn about the opiate crisis: bad, bad, bad. Opiates/narcotics can be dangerous… if used incorrectly or illegally. But for people like me, who are living with multiple chronic pain conditions, this opiate crisis is affecting our treatment plans and more importantly, our quality of life and ability to function. That said, and all dramatics and sarcasm aside, for those of us living with chronic illnesses, the opiate crisis is not the same crisis you hear about in the news or in a doctor’s office… My opioid crisis involves trying to make the very limited quantity of pain medication last the whole month, every month… and then I have to trek back to the doctor to try to advocate for myself and my needs when a change in dosage or medication is needed. I’m really shy/bad at confrontation and in-person advocacy so this is a big stress for me. My opioid crisis is struggling to make each dose last long enough; dealing with a connective tissue condition and genetics that make my body metabolize pain medications too quickly has made treating my pain very hard. High doses of pain meds are hard to get with all of the new FDA laws that are in place due to recreational users and ODs, which of course have nothing to do with my case, but laws are laws and now it’s been made my crisis, your crisis and that of everyone with an addiction and every legal pain patient who uses these meds. My opioid crisis involves choosing between being able to function during the day or being able to sleep at night. I’m an artist and a writer, but I can’t paint or write because of the pain in my hands, wrists and arms. I can’t stand too long, sit still or lay down without having severe pain in my back and hips. When does the pain end? What is more important, sleep or being productive and (semi)functional during the day? My opioid crisis means facing the consequences of others’ actions; I don’t abuse drugs nor do I purchase them illegally or without a prescription. I use pain meds because I am unable to really live without having a way to try to manage the pain, no different than how I work to manage my nausea or my migraines, any of my symptoms that can affect my quality of life. My opioid crisis may not be “normal,” but it’s real. I know so many other girls going through these trials; we are lucky to have each other, but the stress and the guilt and the disappointment from disappointing doctors and failed treatments or lack of access to medications can be overwhelming. There are no words to explain how deeply the system can affect us – and not just because of opiates. I would love to find something aside from narcotics that would relieve my pain effectively. I want to paint for hours with no shooting pains in my arms, hands or back, and I want to type without my wrists feeling like they’re black and blue with bruises every time they hit the laptop/keyboard. I want to sleep all night and run a full bag of tube feeds without waking up in too much pain to sit up. I don’t want to be on narcotics. I have so many goals, and none of them include narcotics, but they also don’t include severe, widespread joint and nerve pain. I also understand why there are strict rules on medications like narcotics. I wouldn’t want them to be easily available to everyone. But that doesn’t mean that those who are truly, legitimately suffering – whether it be acute (post-op, injury, car wreck) or chronic (fibromyalgia, arthritis, Ehlers-Danlos syndrome, CRPS, etc.) – should have to continue to struggle when there are actually medications that could make a difference! Not all of my conditions have treatments. Not all of my symptoms can be managed. So if I find something that helps, and I have doctors saying it makes sense, why does it have to be so damn hard to get ahold of these medications? This system is just mind-boggling sometimes. I want to be a person, not a patient, not a statistic in a research study, just Rachel. That’s a glimpse at my opiate crisis. Follow this journey on Positively Rachel.

Self-Care and Gift Ideas for People With Chronic Illness

Being chronically ill really takes its toll on both your body and your mind. So much about your life changes when you get sick and lose control over so many aspects of your life. It can be an exhausting adjustment. A lot of people think being this sick just entails a lot of Netflix-ing, hot baths, naps and comfort foods. Although for some people those things are a part of being sick, there is a lot more to it than that. Being chronically ill means sleeping endlessly and still not being able to keep your eyes open, counting down the minutes until your next dose of pain or nausea medication, being unable to shower because of orthostatic and heat intolerances, having to have other people brush and braid your hair and all sorts of other fun things! That said, it’s really important that individuals with chronic illnesses take time to do things that bring them joy or make them feel good. Whether it’s self care, comfort items, fashion, etc. I’ve compiled a list of some of the most common “feel good” options to keep in mind if you’re a spoonie looking for a pick-me-up or if you’re someone else looking for a gift for a spoonie.   1. Manicure and Pedicure My personal favorite way to pamper/spoil myself is to have my nails done! It’s a small thing, but it helps me feel a little more put together and fashionable even when I’m in my pajamas all day. 2. Hair – Washed, Cut, Styled It can be extremely difficult for many spoonies to wash their hair due to either orthostatic intolerances, heat intolerances, extreme fatigue or having central lines that can’t get wet. Some girls really like going to a stylist to have their hair washed once a week, and having it cut and styled every now and then is nice too! 3. Bath Package – Salts, Bubbles, Oils Baths can be both relaxing and pain relieving for many individuals with chronic pain. Essential oils and bath salts are great for pain and bubbles are just fun! 4. Flowers Who doesn’t love flowers? As long as there’s no major allergy, flowers are a great pick-me-up. Especially if they’re a surprise! 5. Makeup A lot of girls do their makeup every day, even if they don’t go anywhere. It just helps them feel like a “real person.” My mom used to say that if you dress up and look nice, you’ll feel good, too. Sometimes I think it’s true. 6. Cute PJs When you spend a lot of time bed-bound or homebound, it’s nice to have some cute, comfy PJ options. Being able to change into fresh PJs is refreshing – even if they are just PJs. 7. Lotion, Body Spray, Body Wash Package Every girl wants to smell good, right? Again, watch for allergies, but this is another good option for a gift! 8. Fuzzy, Warm Everything! Blankets, socks, cute leggings – comforting, warm, good for appointments and car rides. Great fall/winter comforts. There are plenty of other ways people like to treat themselves or care for themselves, but these are a few from the top of the list! Whether you’re sick or healthy, it’s important to care for yourself and treat yourself every now and then. Follow this journey on Positively Rachel. We want to hear your story. Become a Mighty contributor here. Thinkstock photo via grinvalds.

Thanking Parents Who Are Caretakers For Daughter With Gastroparesis

When you think of superheroes you probably picture Batman or Superman or possibly some of the Marvel characters. What you picture probably involves super-strength, the ability to fly or shoot lightening out of your palms (does anyone have that power?) and all that other jazz that goes with saving the world. I can’t claim to be an expert on that type of superhero; however, I do know a whole lot about a different “brand” of superhero. I, personally, have my own set of superheroes. When I got sick, we had no idea of the road that lay ahead of us, but my parents, as well as my little sister, have been by my side since day one and their superpowers continue to shine through. I’ve been sick for nearly four years, and over that time I have only become more dependent on them. Although I know the burden is heavy, my parents never complain about the extra role they have had to take in my life. I know what you’re probably thinking – they’re my parents, it’s their job to take care of their child. No parent expects their child to be sick. Of course it’s always a possibility, but who really thinks it will happen to them? I didn’t get really sick until I was 17 years old, so learning how to care for an almost adult child who is now completely dependent on you again is a huge adjustment. My parents go above and beyond what an average parent is required to do for a healthy child. Caring for me is almost a full time job, but both of my parents work full-time on top of caring for me. As I have witnessed through friends and loved ones, not everyone is lucky enough to have such loving and supportive parents. There is no rulebook or contract that binds parents to care for their children in any certain way, and to have two parents who go out of their way to care for me, even as an adult, makes me incredibly grateful. When you become the primary caretaker for someone with a chronic illness, your life is majorly altered and there is essentially no time limit on how long your loved one is going to need to be cared for. Each person has different needs based on their illness and severity, but it is a big job both physically and emotionally. The role of caretaker is most often taken on by parents and spouses. My mom is my primary caretaker at home. Every day she makes my tube feeds, preps my IV fluids, helps me with my medications (three times a day), heats up my heating pads a countless number of times and makes sure I have everything else I need. She also accesses my port every week, helps me wash, brush and braid my hair, does my laundry and helps me sort my medications each week. She often drives me to appointments and helps me keep track of my schedule. When I’m up for it, my mom also likes to try to take me on a little car ride or a short walk if it’s warm outside so that I can get out of the house for a little while. My dad is also a huge part of my caretaking team. He’s here for anything I need him for. He drives me to most of my appointments and makes tons of phone calls for me. He is a huge advocate for me when I’m unable (or too shy) to do it myself. He also loves to do anything he can to help me at home. I often come home from appointments or trips to a freshly made bed and vacuumed rug. He makes my feeds when Mom isn’t home and he is always ready to run to the store to pick up my gum or ginger ale if I run out. Being 21 and completely dependent on your parents isn’t ideal, but I’m extremely blessed to have parents who are willing to play this role in my life without complaint. I often think that being the sick one is in many ways easier than being the caregiver. Although I’ve been able to come to terms and learn how to cope with my own illness, it is often extremely difficult for loved ones to do the same. Having to watch your child struggle on a daily basis and being unable to find any promise of improvement or recovery is an almost unimaginable pain and burden. I see my parents carry this burden and struggle with the weight of it every day. With every failed medication, each doctor’s appointment that goes by with no new answers and each month that passes with no improvement, there is more frustration, more disappointment. This, however, doesn’t slow my parents down – it only motivates them to work harder and push further. There is no end to their efforts to find answers and no limit to what they are willing to do to help my health. My parents, along with many other full-time caregivers, are superheroes not because of any superpowers they have, but because they regularly sacrifice their own needs and desires for those of their patient. They are unconditionally devoted to that patient, and they work tirelessly to find the best care and comfort for them. My parents are not only my parents and caregivers but my biggest supporters and my best friends. I am so thankful to have them by my side. Follow this journey on Positively Rachel. We want to hear your story. Become a Mighty contributor here.

Hope for the Future With Illness

Did you ever write a letter to Santa asking for a puppy or perhaps the new Xbox 360? And maybe Santa brought you a stuffed animal puppy or a FurReal Friend instead? Not what we meant, Santa. And maybe instead of the new Xbox he brought a new game for the totally lame game cube you’ve had for years? Or maybe something completely random like another box of Legos? I mean, come on Santa, that is so elementary school. Snapchatting in the doctor’s office to pass the time We’ve all gotten our hopes up for things that haven’t happened. We recover eventually, but it can be pretty disappointing. I’ve learned that with my chronic illnesses, I can’t get my hopes up every time I go see a new doctor or try a new medication. Some people have trouble understanding this, but for me, there’s a big difference between having hope and getting my hopes up. The latter of the two is the one that is much more dangerous for me. There are a couple of reasons for this, the first being I simply see too many new doctors, each of whom comes with their own plan for therapies/treatments/medications, and not all of them work. The truth is, most of them don’t work! Chronic illnesses are very complex, and there aren’t very many approved treatments for them, so we (the doctors and patients) end up putting together treatments of our own, and it is a lot of trial and error. Our doctors work really hard for us, and I am so grateful for that! Sadly, a lot of these meds just aren’t made specifically for our conditions and so they often don’t work out. Sometimes the side effects are too much, insurance doesn’t always approve treatments and other times the medication just doesn’t help. Either way, if I thought each medication was going to be the fix-all, I would be incredibly disappointed far too often. Laughs, loved ones and pretty dresses – a few things that give me hope The second reason I try not to get my hopes up is because my illnesses are chronic. This means they likely won’t completely go away. I hope every day we find a treatment plan that allows me to live a much more comfortable and high-functioning lifestyle, but I also know (at this point) there is no cure for my illnesses, so I’m always at risk for my symptoms coming back. This can be a daunting thought, but I work with some great doctors and have a lot of hope that eventually we will figure out a way to help me get back on my feet (figuratively and literally some days!) and have more good days than bad. I guess you could say that not getting my hopes up is a sort of safety net. In order to live my life with a positive attitude and to hold onto hope for a more “normal” life, I can’t get my hopes up about each of the individual treatments my doctors give me. However, as one doctor liked to remind me, attitude does make a difference, so it’s important to have hope. This is why I make a point to stay positive and have hope that we will find the right treatment eventually! One of these days a doctor is going to choose the right treatment, and when he does, I am going to be like a kid on Christmas morning who finally got a puppy! Because I don’t get my hopes up every time and therefore don’t get let down as easily, I am able to keep hoping every day for a better tomorrow. I hope for days with less pain. I hope for days with more activity and less napping. (Yes, I want to spend less time in bed!) I hope for times where I can eat more and expand my “safe foods.” I am hopeful I will go back to school and get my degree(s). I am hopeful for a future that holds a more “normal” lifestyle and one that that will include fewer doctor appointments and more time with friends, a job I love, and good health for my family and for myself. And I hope that one day there will be a cure for gastroparesis, dysautonomia, Ehlers-Danlos Syndrome and all of the other chronic illnesses that affect me and so many other people every day. There’s a difference between getting my hopes up and being hopeful, and I have found the balance that works for me. Albert Einstein once said, “Learn from yesterday, live for today, hope for tomorrow.” I’ve learned that living one day at a time is the way to go, but hoping for a better tomorrow never hurts. Follow this journey on Positively Rachel. We want to hear your story. Become a Mighty contributor here.