Chronic Illnesses: Who Knows?

In the past few months I’ve seen increased frequency and severity in my symptoms and even new symptoms coming to light. When I have flare ups or new issues I often become more aware of my current physical state, and ironically, while doing so, I usually think I’m better off until these harsh realizations, moments of brutality that shine a light on the fact that no, I’m not better, I’m actually worse, but I’ve just gotten used to being sick, used to this flare up that just never left, that became my new “normal.”

Though I’m used to high levels of pain, severe nausea, frequent migraines, fatigue, etc. when I wake up and have new symptoms or symptoms I’ve had before all of a sudden “amplified,” it can be super frustrating, discouraging – not to mention painful. But when these “flare ups” come about and decide to stick around for more than a day or two, the mind starts to wonder….

Is this a flare? Are these symptoms going to go back to “normal?” Is there something more serious going on?

Pain is a hard thing to talk about and understand because everyone has a different relationship with pain, everyone’s “scale” is their own – my 6 could be your 9 for example – and you can’t really know what anyone else’s is unless you’re living it. My pain has been a totally new phenomenon the last couple weeks, my body is searing, my head is killing me, it’s just relentless. This pain is different from my “normal” pain, though, so it’s kind of hard to compare them severity wise, it’s hard to simplify it to a word like “throbbing, stabbing, burning, etc.” or a number 1-10 – I’m in severe pain and discomfort all over my body and it won’t give me a break — I wish that were enough to figure out a way to help, right?

“What concerns me the most is the unknown….it is just too overwhelming to think about…”

When my symptoms cause me to be even more “disabled” than normal, when I can’t get up or out of the house for a week or more, I’m hardly able to be around others because of the pain and stimulation, and I’m sleeping excessively or unable to sleep at all, it can be hard to find motivation, hard to force yourself to get up and get going, doing something as simple as shower or change into fresh pjs…

“No one really explained to me the depth or the magnitude of that diagnosis, no one explained how serious and life changing this chronic illness can be….”

There are so many unknowns with chronic illnesses, and most of us learn all about that through personal experiences, not from doctors or even google doctor! Living with conditions that even doctors don’t know enough about can be scary, all of a sudden everything you know is just swept out from underneath you, you’re left with so little understanding and no control over your own body, your own life. This is all shocking, it’s devastating, and you have got to find a way to embrace it, conquer it, and grow right along side it, otherwise, it will break you through and through, not only physically, but mentally and emotionally, mind, body, and soul.

Thoughts 6 Years In

I often feel that when I put myself out there and say, “Screw you, Ehlers Danlos Syndrome (EDS), screw you gastroparesis, I WANT to do this, I’m going to do this,” and I actually DO,  my body comes back at me saying, “uh, hey now, who gave you permission to do that?”

When I do this, I try to compare pros and cons, are these things I want to do worth the payback that will come my way? There are so many things I want to do, and I’m an adult so I can do whatever I want, right? No grounding or taking my phone away, but if I misbehave, my body can punish me in a much harsher manner than my parents ever would.

Yes, chronic illnesses are brutal. Yes I am exhausted and utterly uncomfortable, but now, after years and years of searching for answers or simply searching for relief, I have to learn to care for body and mind, not pushing myself to a point of danger or past a “safe” space health wise, but I also have to embrace what I DO have and what I am capable of. I have to hold onto every bit of the true ME without forgetting where I am in my life right now.

I recently had a bit of medical excitement (a bit of a scare) when a new symptom popped up from out of the blue, but I woke up and honestly thought very little of it aside from knowing I need to be mindful today, just watch for symptoms I don’t usually experience or other warning signs!

So why am I becoming numb to symptoms or complications? Because I’ve seen it happen, because I have hope, but not expectations? I know that many don’t understand that, we all have different ways of coping or different perspectives on the meaning or the terminology — “hope” is relative, similar to grief, we all go through this process with different coping mechanisms. I know that EDS can lead to all sort of complications, it sometimes feels like there’s no end to the diagnoses, every year brings another symptom, another doctor, another diagnosis. I’ve watched it happen to girls just like me; heck, I’ve watched my own health continue to “D&D: DETERIORATE & DIVERSIFY,” so I guess you could say I’m not impacted or fearful in the same way that many healthy people would be when something like this occurs.

Does this lack of reaction represent a lack of hope? Have I built up an immunity to “human” emotions? Do I live life expecting the worst? Fearing or expecting to die? No, I don’t. Though I am forced to consider more seriously some of the not so fun parts of life more than most individuals my age, I don’t plan on leaving y’all anytime soon

So, then, is it a coping method? I suppose, probably, it is. While I prepare for all possibilities, there’s a wall there to protect myself and those around me. There’s no way for someone to focus on something of this magnitude 24/7 without going downhill quickly, so it’s important to me not to let that happen. I don’t want to torture myself mentally by focusing on my physical state all day, every day, but more so, I don’t want my family to have to go through that day after day. They have sacrificed and suffered enough throughout my journey- through thick or thin they are always by my side, but if I can spare them any grief or burden, I will do that. No one should suffer from chronic illnesses like these, but if I have to, I at least want to do what I can to protect others from extra suffering.

Chronic illnesses are nasty and powerful, but they don’t always win. I’m not out of power yet, I have a lot of hope left in me, and even more so than that, I have a will to live. I have a heart that craves more love, a soul searching for MORE adventure and experience, and eyes that WILL get to see the world.

My body may protest, but my will to live and my love for life, my love for simplest of things and the most wonderful people (& dogs) will power me through anything. I believe in the power of love, love is stronger than any fears I come across in my journey, and I am not lacking in love.

(I am single, though, just FYI 😉 )

I have a complex, difficult life, but it is filled with so much good that makes all of the challenges and trials, all of the terrible symptoms and times of questioning or doubt seem so small and unimportant. I am surrounded by love and unwavering support not just from my (biological) family, but also from the incredible community that has continuously come together and shown what true family is. My family expands all the time, it crosses oceans and countries, there are no limitations, just love, support, and acceptance. I’m continually amazed by the incredible, valiant efforts that I never could have asked for or dreamed of and I am reminded often of the true values of life, of friendship, of open mindedness and a judgment-free perspective, etc. I am blessed, I am thankful.

I am sick and I have hardships every day, but I have hope, and I have dreams, goals, and motivation – so watch out world, I’m on a mission and it’s not to the doctors office – and probably not to stand up comedy either.

xoxo

To Those Who Hold My Quality of Life in Their Hands

To Whom it May Concern,

My name is Rachel, I’m 22 years old and live in Virginia. I have an incredible family and two dogs who are the light of my life, and I’m currently living at home on a “break” from college. I’m a recently self discovered artist, I love painting and photography, and I also have a blog. I love working out and swimming both competitively and for fun, my favorite places being Smith Mountain Lake or swimming holes in the rivers, I was born to swim 🙂 I also love driving the back roads with my music and the wind in my hair, I’ve always wanted a convertible. I plan to have a beautiful wedding dress; in fact, if there’s no husband by 35years old, I plan to go try on dresses and wear one because I CAN. I want to travel. I want to live.

I’m Rachel, I’m 22 years old, and I’m a chronic pain patient.

I’ve been sick for six + years, and I have a myriad of chronic illnesses that leave me feeding tube and central line dependent for all “food” and fluids, and with severe nausea and crippling pain every day. There are many days when I struggle just to leave my bed and walk around the small upstairs floor of my home. I sometimes go weeks without leaving the house aside from appointments or my mom driving me to see a sunset or flood or snowy site. I’m often unable to paint or work on my blog due to the pain in my hands and arms becoming overwhelming… I often can’t look at my phone or computer due to my sensory overload and my migraines.

As much as we chronic illness patients love to say that “our illnesses don’t define” us, in reality, symptoms like severe, crippling pain can leave you unable to move, unable to walk, unable to accomplish the simplest of tasks, including self-care/hygiene without the help of a loved one or a caretaker. It causes “painsomnia” aka insomnia caused by severe pain, which in and of itself can be debilitating. The pure exhaustion from being in such high levels of pain can also take over your whole self, body and mind, it can be a scary time if you aren’t able to get relief even just for a couple of hours a day.

I often tell people that I feel like this is a life sentence for the innocent. I feel like sleeping beauty, stuck in her tower waiting for her prince, but I’m stuck in my room and there’s no end in site. I’m the sick girl in the middle of nowhere, but I’m lucky to have parents who work so hard for me.

this is a life sentence for the innocent

Do you have children? Grandchildren? Siblings? Can you imagine watching one of them have a quick yet long term deterioration of their health, and left with daily struggles and little to no relief? Because you’re not doctors or pharmacists so I have trouble understanding why you get to determine who gets these meds and how much we can have….If you aren’t a doctor and you aren’t a patient or someone who has experienced this first hand, what gives you the right?

Last month my pain management doctor and I decided to change my pain management plan after 6 months of consistency, in part to my body’s ability to build up tolerances to medications with lightning speed and in part to the new restrictions on pain medications. With my high, high tolerances and severe, daily chronic pain, it can be extremely difficult to treat, and sadly, it’s about to get harder. Due to the acts of those who abuse drugs, most of whom are not even chronic pain patients, this battle to manage chronic pain and improve quality of life is becoming nearly impossible for those of us on this side of the crisis – those of us who use our medications as prescribed and take them only to help us function on the bad days.

It shouldn’t be so hard to get medications that can improve your quality of life, I struggle so much with that thought, why would they take away these medications when they can help us make life livable?

I hope that the government and the insurance agencies will one day realize how ridiculous this all is, and that they’re stealing whatever potential that I or any other chronic illness patients like me have for relief and a more “normal” lifestyle, taking away the ability to pursue my dreams and my goals without the fear of my pain becoming too much. In this process they’re also taking a doctor’s ability to do their job to the fullest extent right out from under them as they are no longer able to treat patients to the fullest extent or in the way that is best fit for that patient.

There are so many things I want to do in my life. Like any 22 year old, I have goals and dreams and desires, but I also live a life most people my age don’t even know exists, a lifestyle that most can’t even phantom. Sometimes I can’t even imagine what I would do with myself if I were to make it back to society, but I know I’d quickly pick it back up and value every day, every moment, more than any healthy person could.

More on the restriction/ a great article https://www.statnews.com/2018/03/06/cms-rule-limits-opioid-prescriptions/

Embrace It

Illness is not easy in any way, or for anyone. When your life is suddenly pulled out from under with little to no warning, and by something that no one, yourself included, has ever heard of nor can anyone begin to understand, boy does life change.

I got sick in high school, and thanks to some ignorant doctors, my parents were pretty sure I was going to be better in no time. I was a young female so of course the daily, crippling headaches were hormones and all the pains in my joints, nerves and ribs were simply growing pains, because as my lovely doctor said, “it’s normal for young women to be in pain.” Right. Helpful

Well when I got to 2 months of being unable to keep down most foods and was on homebound because I could hardly stand up from bed or be on my feet too long without passing out, nor could I eat or stay awake during school… I finally got admitted and got my diagnosis. Gastroparesis. What the heck is that, right? I don’t even think my doctors knew, because no one told me that it would change my life , forever.

I’ve come across so many medical professionals who have no idea what I’m talking about when I tell them about my health conditions…. EDS, POTS/Dysautonomia, Dysmotility/ GP, SIBO, migraines…. Is it so hard? Well maybe, but it shouldn’t be for doctors.

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My family was and continues to be incredible and supportive in every way they can – even if I don’t always want comfort or support for myself. My mom grew up in a family where the flu wasn’t a real risk, a fever was just to keep you flushed and warm, and complaining wasn’t an option. What’s a doctor, right? As long as you could walk and your eyes looked strong, you were good to go – dress nice to feel nice.

To the point, my mom quickly adapted and came through for me and after some rough times in the earlier years, we grew closer than ever as she became my home nurse doing anything from making and hanging my feeds and fluids, sorting my weekly meds, helping me shower when I can’t do it on my own, brushing my hair even though I’m terrible about it because it hurts… I don’t know what I’d do without Nurse Bibi.

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My dad and I have a different relationship, but it is so important to me, even if I have trouble showing it sometimes. He’s here for me no matter what, any time, any day. We go to out of town appointments and listen to fun music, joke around, etc. He helps me relax before appointments when he knows I’m anxious. He also lets me sleep or supports me when I want to do something else.

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That reminds me so much of my year round, travel swimming days when Dad and I would drive to the meets just the two of us because I was so shy and didn’t have friends on the team, but I got dad to myself and we had so much fun. Dad also taught me how to drive 🙂

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My little sister, Laura, has been majorly affected by this situation. She was looking forward to be the only one left at home while I was at school, but here I am. She graduated high school and is now in college. Pretty soon she will be ahead of me. Shes beautiful and gets more attention from boys than I ever did, even before I became the lost girl in the woods! But Laura harbors a lot more feelings and trials than she lets out. I’d do anything to take that back, but I don’t have many options. I’m sorry to put you through that, Laura. I wouldn’t wish any of this on anyone.

Mom and Dad have different love languages, and so do I, but I have to remember how much my family does for me, and I have to put aside any pet peeves that I can in order to truly show my appreciation and love. I’m not great with words right now, I don’t love physical touch, but I do well with actions and giving gifts or sending/writing out my feelings. That, however, is the opposite from others in my family. Dad loves physical touch/hugging, mom loves actions, Laura… probably actions that follow words. Don’t lie. Don’t make anything up. Don’t take credit for something you didn’t do and don’t deny something you did do. Make sense?

Life is short, right? So  embrace every day, and then really embrace the people you love. Can you make a sacrifice or step out of you comfort zone for a 15 second hug? Or a dollar store gift? It’s the thought and the effort that count, most of the time 😉 Family, by blood or by love and loyalty, are the ones you end up needing. It’s never too late to start appreciating people more and treating them as such.

Chronic illness can affect more than just the patient, when you have caretakers and live at home with family members, parents, or your spouse, they all suffer and worry and work so hard throughout the journey. So when you think about the patient and regularly check in or want to be of help, I can tell you that the caretakers (For me, my parents and my little sister) need just as much TLC as I do. It’s also so important for me, the patient, to take time to appreciate each of those people in my life, make sacrifices for them as they do for me, and treat them in the best way I can, even when I’m feeling terrible. This isn’t a battle anyone should fight alone.

 

Love and be loved, go out of your way to support and care for those in need, it’s the best thing you can do for yourself as well as for others.

 

Chronic Illness Tips for the Hard Days

 

Sometimes physically difficult days can also lead to mentally and emotionally challenging days, and if you’re alone or unable to distract yourself, these days of discouragement can turn into weeks of depression, so I want to share some tips on what to do on the difficult days — this applies to spoonies, tubies, mental health patients, and really anyone in general– everyone has bad days!

  1. Get up and change your clothes – This is one I’m often guilty of during my homebound/bedbound times, so I know it can be one of the small hassles we often put off when we are having a bad day or an unmotivated day due to pain, nausea, fatigue, whatever it is for you that day. That said, sometimes just putting on a new pair of PJs, a super comfortable t-shirt dress, or sweatpants, whatever it is that you’re comfortable in, can make you feel a bit fresher and lighter, ready to take on the rest of the day (in bed) 😉
  2. Self care – simple at home or out and about, face masks, nails, Epsom foot soaks, whatever your favorite thing is—
    1. showers optional if you don’t have the energy – one day doesn’t kill ya. (neither does 2 days….3 days? 😉 ) I’m no shower person w/ POTS and GP, but the body adjusts amazingly when your body is adapting to changes like these. Buy some great shampoo and then dry shampoo & leave-in products and you can easily get away with washing your hair once or twice a week. It takes a bit of time, but your hair starts adjusting and working to stay clean longer.
    2. Some people love doing their makeup, even if it’s just for themselves at home! If it makes you feel good about yourself or makes you feel more like yourself, do it! Lay in bed with that red lip stain, work it girl.
  3. Even taking a walk or doing some stretching can refuel both mentally and physically – laying in bed all day/all winter can cause more pain…. Easier said than done, but finding your favorite way to get up and moving — walking, dancing, yoga, biking, etc. — can be great for you in so many ways.
  4. Call up a friend—just have a movie night or go get your nails done, doesn’t have to be crazy night out, just some fun, time to enjoy yourself and for a moment, maybe, forget how crappy you feel.
  5. Dogs are top notch medication/therapy and the most reliable members of our support systems 😉 Find a dog, get a dog, rescue a dog, steal a dog, borrow one… they’re everywhere, and they need love as much as you do!
  6. Listen to music or get out your favorite coloring book or paints and use that creative brain in there! Sometimes all you need is a little bit of a distraction, a different focus for your brain, even if it’s just for 15-20 minutes!
  7. Take a drive. Cant walk? Take a drive with your family/friends/caretaker and just get some fresh air, get out of your house for a little while. See the outside world.
  8. Do YOU. What makes you happy? When do you feel your best physically and/or emotionally? Whatever that is, do it. Drop what you’re doing, take any meds you need to / can so you are comfortable (ish) and follow your spirit, your heart—your body may hate it, but sometimes an outing or a self care distraction can do you wonders.

 

Follow your heart, listen to mind and body, and don’t be afraid to express your emotions. If you can, talk to your parents, siblings, significant other, or friends/loved ones. You can also find so much support through online support networks, one huge gift that technology has shared with us; friendships with others with your conditions can be incredible, its a feeling of life long friendship with someone you’ve spoken to online for a few months and then in the years to come, through your worst flare ups and your toughest, lowest times you are being supported by someone you’ve never met in person, but someone who becomes the person.

Find your happy. Find your happy in activity, find it in hobbies and in friends or animals, in art or cooking, in working or advocating, but most importantly, find your own happiness that comes from within your own self. Love yourself, care for yourself, and don’t doubt your strength. When you need to be reminded of your worth or your strength or your beauty (inside and out), remember this, remember that you are your harshest critic, but you are strong enough to push through anything if you are strong enough to live with chronic illnesses. There’s nothing harder than this, so stay confident and have faith in yourself, care for yourself in any way you need/want to, and remember that YOU and your health, mental and physical, come first. You are worth it, worth so much more than any words I can put together, so I think I’ll call it here:)

 

 

Willfully Determined

Yesterday I pushed myself to do more and to do different. I decided to be a 22 year old for a few hours, I just ignored the fatigue, took the pain meds, and went to back to back movies (7-11:30pm) with my sister, who didn’t think I could stay out late anymore. It was a gift to both of us to be able to spend that time together, just enjoying doing something that was so out of the norm.

Usually I sleep through 60-80% of movies anywhere we watch them, our basement, my room, the movie theater, other peoples houses… But last night I worked hard to stay awake, and I did a stellar job. My POTS/dysautonomia leaves my body unable to pump blood to my brain when I sit down for too long, so I fall asleep or pass out even if I’m loving a movie or having a great conversation with someone; but usually, if I move around or take a walk I start to feel much more human again and stay awake for at least 10-20 minutes 😉

My family asked me if I really had energy for this, and here is what I told them,

“No, I don’t have the energy, but this isn’t about energy.  This is about desire and determination.”

Sometimes I have to accept my symptoms, accept my situation, and make a choice to push past all of the exhaustion, pain, nausea, and sensitivities so that I can remind myself and those around me that I’m still me, and that there are still things out there, outside of my “safe zone” (aka my house and my room). Watching the world go on without you can be a very strange feeling, it’s like watching from an outside view, looking down on the life I thought would be mine and watching others continue on without me. The world doesn’t wait for anyone.

Recently I’ve been hearing a lot of “nothings” from doctors; some literally don’t have anything to say, don’t answer emails or calls or anything, others telling me they can’t take on my case or I’ve exhausted the options they can offer. It’s a lot of “keep you comfortable” and “manage symptoms.”

After so much of the same, I’m so tired of doctors and meds and tests or treatments that no one actually thinks will work. I want to live. I want to experience my youth, I want to really feel alive and I want to cross items off of my bucket list.

I want to travel and see incredible sites and take countless photos. I hope to visit all of the girls who I’ve met online, the ones who have helped me through these years of illness, and I want to meet new people, and fall in love. I want to get rid of these tubes so I can swim with dolphins and scuba dive, get as close to my mermaid dream as possible.

I have a lot of goals, and I may never accomplish all of them, but they make for some happy thinking & I never pass that up. 🙂

 

IVIG Round 5 & Lots to Consider

Yesterday was round 5 of IVIG (Intravenous immunoglobulin). I’d love to say this was my miracle round and I woke up ready for a huge stack of pancakes or a burger and fries at ihob, but sadly, no pancakes, and definitely no burgers on my menu anytime soon.
 
I had IVIG yesterday (tuesday) at noon; I wasn’t feeling well & I slept through majority of the 2 1/2 hour infusion, so it went pretty quickly. When we finished, I was already experiencing side effects like low grade fevers, extreme fatigue, brain fog, pain, nausea, etc. When my nurse left and I had gotten settled, I slept for four more hours; Mom and Baxter woke me up around 7pm. I got up and took a short walk to get up and moving, out of bed for a bit and get some fresh air. I was asleep again before 9pm but continued to wake up every 4 hours as my pain and nausea medications wore off.
 
Today I’m still exhausted and experiencing a lot of elevated symptoms; by this I mean I am experiencing symptoms similar to my usual pain/nausea/migraine/weakness/etc, but they are kicked up a few notches and much less respondent to my meds.
 
I’m working hard to stay positive and mindful of both body and mind, and I have a long list of things I’d love to accomplish– artwork, tasks for my package project, blog posts/updates, outreach to volunteers and donors, thank you cards, etc.– but my body is telling me in many ways that I need to slow down and remember that it’s okay if I only get one thing done today, it’s okay if all I can do is sleep and recover. I’m doing my best, and there’s nothing more important than my health– or at least that’s what I tell my newbie tubies in their tip lists, so I guess I have to believe it and try it if I’m going to be preaching about it to others…:) 
 
Having a body & mind that are on different pages can be really challenging, but I am constantly learning and adapting as both my body and mind continue to change, often on their own volition.
I hope to see some of my specialists this month so we can determine what the best plan for moving forward is. More IVIG? No more IVIG? Are there other treatment options, or are we back to “keep you comfortable”? It’s all up in the air at this point, but honestly, I just want peace and as much normality as I can get. I don’t want to be stuck by more needles, put in MRI tubes, traveling huge distances to see doctors who spend 15 minutes with me only to tell me the same things I’ve heard before… “complicated” or “medical mystery” followed with, “manage the symptoms” and “keep you comfortable.”
There are no certainties in life, so take advantage of every moment you can, that is exactly what I aim to do.

My Opiate Crisis

The opiate crisis. Two words, so much baggage.

I think it’s reasonable to say that most individuals over the age of 15 living in the US 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 & 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 & ability to function.

That said, and all dramatics & sarcasm aside, for those of us living with chronic illnesses, the opiate crisis is not the same crisis that 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 every addict or 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 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 suffer 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 a hold 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.

 

Tips for Tubies: Tubie Love & Acceptance

I never could have imagined needing a feeding tube at 18 years old, and now, at 22 years old, I am still relying on my tube(s) — now I have two tubes and a central line. I’ve had tubes for so long and learned so much that now I’m able to teach others about them! My life took a huge change in direction when my health took a turn for the worst and had my tube placed; suddenly I was experiencing so many changes in my lifestyle and my body. I began to feel like I had zero control over my own body, and everything I had planned for my life, my future, began to slip away with every day, month, year, that my illnesses progressed. My feeding tubes took a little while to get used to, physically and mentally, because they cause bloating, they stick out through certain clothes, and they can leak and be kinda gross…but they also saved my life.

Learning to love your feeding tubes as well as yourself, both your body and your lifestyle, can be a challenge at first…I struggled for a long time to find confidence and acceptance of both my body and my tubes, I still struggle almost every day to pick out a shirt that doesn’t hug my tubes or my central line too tight or pants with a waistline that doesn’t hit my jtube… it’s not easy to feel confident when you feel like you’re the only one who looks like this, the only one with tubes, alone in the journey you’re facing.. my goal is to help others feel less alone.

Here are a few of my tips for adjusting to tube life and learning to accept the tubes as well as all of the way those tubes affect you, your body, and your lifestyle..

 

1. It can be hard adjusting to tube feeding and not feeling in control of your own body, but you should never feel ashamed of the tubes or the changes they can bring to your body. These tubes keep you alive every day. It may take time to come to accepting this addition to your body, and that’s absolutely okay, totally normal; but always remember that health comes first!

2. You get a feeding tube to restore your body and increase both strength and energy. Feeding tubes may be a bit of a pain, but they are meant to give you your life back, not take it away. Never give up on your dreams or your goals, although everyone’s healing times are different, and we all have different underlying causes/conditions, feeding tubes themselves don’t need to be looked at as a disability or a limitation; in fact, for many, they are the opposite.

3. Trying to eat while you’re a tubie is not anything to be ashamed of, and it does not invalidate your need for your tubes. Many people (with tubes) have a couple “safe foods” or still drink liquids, some can only suck on a piece of candy here or there, but either way, food or no food, you are still you, and only you know your body. If you can tolerate any oral intake and your doctor is okay with it, attempting to keep your system “awake” even with an occasional, tiny snack can be good and in no way invalidates your need for a tube.

4. Try to stay social! Being so sick and having a surgery like this often leaves one feeling exhausted, worn out both physically and mentally from the pain and inability to care for ones self; when getting out of bed is a painful challenge and showering takes more energy than was stored up for a whole week, it’s easy to get discouraged . Getting dressed and going out takes a ton of energy, but it is so good to get out, it’s too easy to become isolated! Friends will only take rejection so many times before they stop asking to hang out; even just suggesting a movie night or spa day at home is a great option to see friends, make plans, but not use as much energy. Your health comes first, but part of taking care of yourself means taking care of your mental/emotional health too, and having a healthy social life and support network is so important during times like these.

5. Feeling down in the dumps? During recovery and during challenging times throughout your journey it is so easy to slip into a “chronic illness mindset,”  which essentially means that to some degree, many have a time of feeling a loss and grievance over a “pre-illness” self, a self that can begin to disappear when illness takes over and we lose some of our abilities to function in the “normal” ways, or in the “normal,” functioning world.

If you sense yourself falling into one of these times, I highly suggest finding a way to remind yourself of your goals, your dreams, yourself. Try creating a vision board, definitely one of my favorite ways to remind myself of where I was before illness and where I want to go now, what I want to do in my future, and all of the things past, present, and future that give me hope and motivation. Just begin by thinking of all of your goals and dreams, even the totally unrealistic ones (being a mermaid, traveling the world in 30 days, learning to fly, etc.), and cut out pictures and words and quotes in bright, bold photos or lettering and then make a collage on cardboard or a tack board, heck put it on your wall if you want!  Hang it in a place where you spend the most time and allow it to encourage happy thoughts and positive thinking 🙂

I know people saying “mind over matter” and “just think positively, distract yourself” can be really frustrating or degrading, but positivity really is important if you want to make it through these transition periods and through your journey with chronic illnesses in general.

 

I plan to continue with more tips soon as well as some personal experiences with tubes, both good and bad 🙂 I am also going to be making a new vision board, and I will post a guide of how I did it when I can 🙂

Thanks for reading, don’t forget to check out the tubie items & artwork in the shop! Every purchase supports the Newbie Tubie Project, enabling us to send out another package & help another tubie adjust to life with tubes.

xoxo

 

 

** i am not a medical professional, just an experienced tubie sharing my experiences as well as those of other tubies who help me compile information to help inform others about what “tubie life” is like and how to make the best of it 🙂 Please consult your physicians before changing any medical treatments/procedures.

Good News– About time!

Well y’all, I have some great news. About time, right? Let me start by saying that I’m thrilled with this news. It’s incredibly exciting for me as well as for my family, but, I am writing this post and explaining this news to you because although it is wonderful news, and it is what I’ve been waiting for forever, it’s not going to be a walk in the park, piece of cake, cure all for me… it’s a complicated treatment that is not widely used for my condition but nonetheless, my best shot.

A couple of days ago I got the news that my IVIG has finally been approved, and not just for one dose, but for 13 rounds.  We’ve waited over a year and seen 3+ specialists in order to make this happen, it’s been a crazy battle to get to this point. On Monday 2/19 I will have my first round!

IVIG is IV immunoglobulin therapy. Essentially it is meant to reboot your immune system and help alleviate or reduce the symptoms of autoimmune or immune conditions. For me, the catch is that I do not have the typical conditions that IVIG is currently used to treat. There are many trials going on with how IVIG can help different conditions, gastroparesis included, but there’s no FDA approval for IVIG as treatment for it yet. That said, this is my only viable option left and because I do have an immunodeficiency, I was finally able to get it approved.

Throughout this process I’ve heard a lot of “slim possibility,” “doubtful,” “statistically…” “honestly…” “be prepared for disappointment…” and all of the other phrases doctors use to tell you they don’t think things will work…

BUT, we heard someone say, “it’s worth a shot,” and here we are today, after a long fight, ready to start a new trial.

IVIG is something my family and I decided was our best chance for change. Not all of my doctors agree, but when do they ever? It’s not a treatment widely used for gastroparesis or EDS/Dysautonomia, but because my immune system is involved, there’s a chance my GI system could respond in some way to it. My motility specialist is the one who suggested it as one of my last 3 options for treatment; today, this is the only one of those three options that I have left.

We don’t expect miracles. In fact, I try not to make expectations at all. I hope it works. It would be incredible. But if it doesn’t, I don’t want to be crushed. I’ve been warned by doctor after doctor that it is likely not going to help, so I’ve pretty much got that in my head, but I also have my own hope and positivity in there thinking maybe this is going to be it. I’m not a blind optimist, but I do have hope. It may be hard for some of you to understand that combination of emotions and feelings, but I’m glad it is, because it means you’ve never had to be this sick, and for that I am thankful.

I wrote this update because I know you all care, I know you all want and deserve an update, but I also needed to share with you how this process is going for me. It’s not going to be an easy treatment. It’s not a miracle drug. It’s not a guarantee of success or relief. It’s a treatment that is extremely hard on the body. It has major side effects. It’s a long shot. But it’s my only shot.

IVIG is what I’ve been fighting for and waiting for for a year. I’m so, so relieved that the fight for approval is over, but that doesn’t mean my battle is over, it’s onto the next step now. My family and I have worked so hard for this; hours of phone calls, emails, paper work, doctor visits, denials, tears…what a journey it has been, and now the journey continues. It will take at least 3-4 months to see any results even if this treatment does work. All great things take time.

What I need in this time is for my support team to just be here for me. I will update if there are any improvements or changes, I will update on how the treatment is going and if I am having any side effects or complications, and I will do my best to post regularly so you know whats happening in general. Try not to set expectations, have no disappointment, no pity or sadness if I see no results, no explanations of why it hasn’t worked or reassurances about when it will, just be here for me.

All I need is love. Support. Laughter. Company. Friendship. Exploration. Care. Distraction.

I’m sick and treatment is hard and unpleasant, but I have my ways of coping and I am still a person and sometimes I just need to be Rachel.

 

xoxo