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.

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/…

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.