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. 🙂
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.
The doctors work forYOU. Not the other way around. If a doctor (or a nurse, tech, or anyone else in the medical system) treats you with any less respect or dignity than you deserve, consider finding a new specialist.
No question is a bad question. There are awkward questions and there can be a boatload of questions, but all of them are important. Ask until you’re satisfied, even if the doctor is acting rushed or distracted. Your health and confidence is more important than anything else.
Some surgeons aren’t big talkers – they like to get the job done; make a list of questions and concerns and make sure to ask them the first time you see them pre-op/post-op or during your follow ups, it could be the only time you see them!
Recovery can be even more challenging than surgery itself. Have people who will be around to help you or at least set up some people to come visit and check on you each day. Before surgery, set up a place by your bed or couch where you can keep some essential items so you won’t have to get up and down every time you need something.
Don’t push yourself! There are no “shoulds” with chronic illnesses or tube feeding. If recovery is taking longer than planned, take some time off from school or work if you are able to! Learn that it is okay to say no when your friends want to go out to eat or get drinks late on a Friday night, if you feel cruddy or just don’t want to be around food, it’s okay to stay in or suggest a different plan. No guilt.
Learn to advocate for yourself. It can be hard to really get doctors to understand what you truly feel and then to get what you need to be comfortable. Be persistent and thorough in explaining symptoms and how it affects your life. If you aren’t good at being forward, take a parent, spouse, relative, or friend who can help make sure everything gets covered.
These are just a few of the major tips for getting started with “tube life,” but they’re applicable throughout the journey with feeding tubes and really with any chronic illness. Learning to manage your case, advocate for yourself, and stay on top of appointments/doctors, questions, and treatments both past and present can be a big task, but staying organized and figuring out early on what methods work best for you to manage it all is really beneficial in the long run.
Keep your eyes out for more tips, the next round will be more tubie-specific regarding tube care and what to look out for vs what not to get freaked out over! 🙂
Thanks for reading and I hope it was helpful! If you have questions or suggestions don’t hesitate to comment or message me!
**Happy Feeding Tube Awareness Week! This is the first new post, keep your eyes open this week for more posts including but not limited to : Tips for Tubies, a project update, New tubies: Products to start with and where to get them, more on my personal experiences, and a special video! It’s also a great week to buy a painting or send a donation to Newbie Tubie Care Packages, so click here if you’re interested in more information on that :)**
Next month, in March of 2k18, I will celebrate both my 22nd birthday and my 3 year tube-iversary. In March of 2015 I was in school at UVA where I celebrated my 19th birthday on March 8th and then was admitted to the hospital the next week with a blood infection from my central line, which was keeping me nourished and hydrated at the time. On March 24th I was again admitted to the hospital for surgery to place my first long term feeding tube, a GJ tube that went through my stomach and into my intestine where I get my feeds.
Although I’ve had gastroparesis since high school, I never could have imagined that my case would become so severe, leaving me with a feeding tube(s) that could be part of my life indefinitely, taking me out of school, and changing the way I was able to plan for the future. When I first got my tube, my doctors hoped it would only be for a few months or maybe a year if I was really struggling, but we had no idea that my “flare” was about to become my new normal. Instead of having a few months of worsened symptoms like I had in the past, I waited a year… and then another year… and now another year with no relief.
After I finished my first year of college my health was at an all time low and I wasn’t able to go back to school in the fall. My tubes did help my nutrition, but I never tolerated them well enough to get in as much feed as the doctors wanted me to, never enough to gain a lot of weight back. It’s been three years on medical leave now; my classmates, my friends, will graduate in the spring and I won’t have had another day to be there with them.
My parents and I worked so hard to find answers, anything that would bring even partial relief; our original goal was that I could go back to school, but after a year and a half of incredibly severe symptoms and the addition of 3-4 new diagnoses, our goals became things like, “getting Rachel out of the house more… helping get her able to volunteer or babysit sometimes,” and at my worst times, it’s just “getting Rachel more energy and less pain/nausea so she can get out of bed…” From the Fall of 2015 through Summer of 2016, I saw at least three different specialists who are top in the nation on my conditions. Sadly, there are only a few medications that are used for gastroparesis, most of them not even FDA approved, and they can have nasty side effects.
My last (and current) motility specialist is at the Cleveland Clinic and is considered to be one of the top specialists in the world on gastroparesis and dysmotility conditions. He did extensive testing to find a root cause of my GP and to try to find a treatment option, but what we found out is that my gastroparesis had gotten so bad that the numbers were matched with only one other girl’s testing as the second worst cases in CC records. I actually met the other girl online and have been able to talk to her and compare notes and, sadly, she’s still struggling in huge ways—she could use your thoughts/prayers.
Because my dysmotility (lack of motion, “motility”) has moved into my intestines and almost stopped my colon’s motion (colonic inertia), my options are very limited. I had one viable treatment option that we were told was a long shot at working, but it’s my best/only shot. We have been working for over a year now to get IVIG (IV immunoglobulin therapy) approved, it has been a long and tedious attempt that has involved 3 doctors and multiple infusion centers, lots of disappointment, and plenty of reality checks. There isn’t a great chance of it working, but it’s essentially my last major treatment option, so it’s what we have to keep fighting for.
Last year around this time, a few months before, I started having a lot of trouble with my GJ tube flipping up into my stomach leaving me unable to do feeds. Because it was happening 2/3 times a month, I was getting malnourished and dehydrated and had lost even more weight—my all time low. It was decided that I needed to have a jtube placed, one that goes straight into your intestine, not through the stomach first, but it took us awhile to make that happen.
It took me almost another year to get that surgery done due to my malnutrition and some complications with doctors and finding a surgeon who would take on my case, but on October 18th I had surgery for my new feeding tubes. There were some complications during surgery as well as in the week post-op, and recovery was long and extremely painful. But, during that time I came up with my plan for my new project, Newbie Tubies, and now that has come to life and is such a wonderful part of my life.
My first mini- art show; this is both a pain distraction therapies and my #1 fundraiser for Newbie Tubies.
My first package sent! Now I’ve sent over 20!
I may not have ever been able to imagine my life turning out this way, but I have learned, been inspired, shared my knowledge, and seen things in a new perspective. I couldn’t do it without the support of my family, I’m so, so blessed to have parents who are willing to do anything needed to care for me and help me be comfortable.
Being a tubie is just a part of me now, and I’m more than happy to share all I can about that for Feeding Tube Awareness Week. <3
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.