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. 🙂

 

Newbie Tubies: How to Sponsor A Package

Time for a Newbie Tubie Update! I am so excited to share that Newbie Tubies has had a huge increase in the number of applications we have received for packages. This is fabulous news, I couldn’t be happier to have this project be so successful and to be able to help so many new tubies adjust to life with feeding tubes.

In all honesty, this huge increase in apps is also a bit overwhelming for me, as a tubie myself, being the one who goes through each application and has to approve or deny each applicant, each fellow tubie… it’s not an easy task! But when I finally get to begin picking out items and pack each package, specialized for each unique, first time tubie, I’m reminded of why this is important work, why I started this project in the first place.

Being able to do this is such a gift, it’s a gift for the tubies who receive the packages, but it also a gift to me and to anyone else who has the chance to experience what it is like to help others go through this strange and misunderstood transition.

Many people have offered support in a multitude of ways, but to share this incredible gift with more people, both tubies & “normal” /healthy people, or donors, I’ve decided to begin offering the opportunity to sponsor a tubie package. I will always take “blind” donations, but if you are interested in knowing where your money is going, or if you want to do the shopping yourself, I am so happy to share this experience with you.

I have applications for new tubies of both genders that range from ages 0-30years and sometimes older.If you’re interested in sponsoring someone close in age to you or your child, I can almost definitely find you an application that fits the bill. I will not be providing any personal information about the tubie, but I will provide a list of that individual’s interests as well as the “Tubie Shopping List” to help guide you in your shopping; you can also add in anything else that would fit in the package and make sense for your tubies age/gender.  After you shop, I would add in the tube items that you likely wouldn’t be able to get on your own as well as our tip lists, donor lists, and Newbie Tubie info before shipping it off.

This process is very similar to the angel tree or shoe box gifts you often see around Christmas time, but this is year round and a bit more specific. There will always be tubies in need of support; sadly, the medical system doesn’t always do a great job at preparing children, parents, young adults, etc. about the transition period to tube feeding or what it means long term. A lot can go unsaid which leaves a lot of room for confusion and unnecessary panic.

**With a donation of $25 or more, you are paying for shipping ($14) and helping pay for some of the extra items in the packages. $30-$45 would sponsor the whole package, all supplies and shipping.

***If you donate $25 or more, you can sponsor a package AND get a painting of your choice from the selection in this album, all of which are originals made by me, Positively Rachel’s Art.***

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I do, of course, accept monetary donations, as well; monetary donations play a vital role in covering shipping costs– each package costs $13 just to ship! So, whether it be $5 to help me buy a few new mini hand sanitizers or $50 to cover package & shipping (maybe more!), you’re helping make this project happen. For that, I am thankful, and you should feel good for helping others during a hard transitional period in their lives that (most of) you can be glad you won’t ever have to deal with. (knock on wood)

My artwork is where majority of Newbie Tubie funds come from; I sell abstract, acrylic paintings and notecards with prints of my art/photography as well as bags, onesies, shirts, and more with vinyl prints to spread awareness & raise funds! You can order my art through the blog or through private messaging (instagram, facebook, email), and I do take custom orders as well; all of my profits from the art sales go towards what supplies are not donated & shipping costs for Newbie Tubies.

The easiest way to donate or pay for paintings is through paypal (rajinone@aol.com), but I do take cash and checks as well.

This is a stellar opportunity to do something really meaningful, to pay it forward.

Help me by sharing this, if you’re a tubie/spoonie or if you’ve received one of my packages, share how the packages helped you, share a bit about the challenges or what you’ve learned in your journey.

Thank you for reading, donating/purchasing, and for supporting both the Newbie Tubie packages and my art.

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instagram: newbietubies (or) positivelyrachels_art
positivelyrachel.com


Facebook Art Sale/Sponsorship:

https://www.facebook.com/media/set/…

Not Just a Patient

I am a person.

I may be sick, I may be a professional patient, but I’m also a person, but sometimes I feel like less than that when doctors, nurses, or insurance agents treat with disrespect, have biases against me before even seeing me or getting to know me, or neglect my physical or mental health because I am a challenging, serious case on the inside and a young, blonde, smiling 22 year old on the outside; invisible illnesses, especially in young women, often lead to many instances of mistreatment from medical professionals.

I’m almost never late to appointments. I have never missed, skipped, or forgotten an appointment. I email doctors with updates, questions, and reminders so that I can keep things going as efficiently as possible. I fill my meds, do my feeds, and try pretty much every alternative therapy suggested. I treat doctors with respect, no matter what. Not to sound stuck up, but I truly can’t think of much I could do to become a better patient, but honestly, that’s not my job in all of this. I am the patient, and I pay for these doctors to help me.

The idea of “doctors working for me,” is something I had never thought of before about a year ago when someone said it to me after I had a doctor say some hurtful things to me; I don’t work for the doctors, they work for me. They have no right to treat me with any less respect than they expect me to have for them or than they would have for another doctor, a friend, or a family member.

In fact, they should be treating me with great respect even if I’m not being extra outgoing or outwardly friendly. I don’t get paid to be sick. I don’t want to go to the doctor all the time. I’m often traveling hours to see them for just 10-15 minutes and they’re often not even able to help me or offer me anything new, so if I’m upset or not talkative, it’s just out of disappointment and frustration with my situation.

But doctors have chosen to be there, to help people. They choose their specialty, choose where they work, what age they work with, and they get paid very well for what they do. But just because they get paid and because they went through medical school doesn’t mean they are better people or even that they know what’s right.

Having invisible illnesses is hard. Many of these conditions are rare and under researched, doctors in small towns and even doctors who work in highly respected hospitals but aren’t specialized just don’t know these conditions. I’ve been to endless doctors who can’t pronounce the names of my conditions, don’t know what they are or what the symptoms are, or think they know and insist they know but are downright incorrect.

Sadly, a lot of girls with conditions like mine deal with doctors being rude or curt, abrasive, neglectful, biased and judgmental, and even abusive. Whether doctors are just having a bad day or whether they think they can speak to us in hurtful ways just because we are young or pretty, appear healthy, or smile and laugh like “normal” people and aren’t bald or in wheelchairs 100% of the time, I don’t know, but I do know that their actions and words can affect us for a long time.

When we are treated so poorly by people we have put our trust into, it isn’t just upsetting for a moment, it often affects our ability to put our trust into doctors and the medical system in general. Sadly, the only way someone like me can live at all comfortably is by seeing a multitude of doctors and working very hard to find treatments and medications that help minimize symptoms. We’ve put our lives in the hands of these people, we literally cannot go on without them. There is no excuse for them to treat us poorly, but when they do, we lose trust for them and we lose what faith we had in the system.

Doctors can go home and take off their white coats and eat dinner with their families, never having to think again about how that day went or what a patient said or did, but we go home and have to deal with the consequences of appointments for days, weeks, months. We rely on doctors and nurses and insurance agencies not just to be alive, but to have any comfort on a day-to-day basis. It’s not an option whether or not to have doctors or treatments, so if we lose one doctor, we have to work hard to find another one who is as good or better and willing to take on a tough case.

Conditions like mine mean you sometimes have to be both patient and medical expert, which is frustrating and exhausting. I don’t ask my doctors for magical treatments or cures that aren’t out there yet, but I do ask them to treat me with respect and dignity. I’m a person, not just a patient.

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

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

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

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

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

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

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

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

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

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

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

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