The Dawn of Twilight

Many people are motivated to alter the contours of their lives by the threat of imminent death. I, however, progress solely with the possibility of living again. Not a twilight has twinkled without my questioning if it might be my last; the imminent discord of death has churned in tandem with my protesting organs. At long last, my feet grasp the earth without desperation, without finality. There are only withs ahead. With freedom. With love. With laughter. With health.

Patient/Nurse


I appreciate the equally educational and vulnerable perspective harnessed by Melissa for her #GetThePiccture feature. The following explains in easily understandable imagery, The purposes and imagery of central lines. Thank you, Melissa!

While I have managed numerous patient’s central lines as a pediatric nurse, I have learned astoundingly more about living with one through my own patient experiences. As a nurse, I like to explain to kids that their body is having a hard time getting what it needs- so their line will be like a straw, allowing them to drink all the best stuff to help their bodies grow stronger. 

 As I type this, I am lying in a hospital bed, listening to the hum of my IV pump infusing antibiotics into my straw- my port, my current lifeline. I was in the ICU just 4 days prior, admitted with severe sepsis. I got my port just a couple months ago, and use it daily to infuse my nutrition, a large milky white bag of TPN and lipids.

 I am on IV nutrition because I have both Crohn’s Disease, and a rare disease of my autonomic nervous system called Autoimmune Autonomic Ganglionopathy. Essentially, the parts of my nervous system that should work “automatically” are being attacked by my confused immune system. Due to this my stomach and intestines do not like to move and process food as they ought to, I have a difficult time regulating my heart rate and blood pressure, and I have a tough time thermoregulating as I do not sweat.

I have had 5 different central lines throughout my life. A PICC line when I was 10 and going through a severe Crohn’s Disease flare; and the remaining 4 within the last 2 years. Before I got my port placed I had three PICC lines within a matter of two weeks. I made all the ER nurses laugh when I reported that I pulled one PICC line out in my sleep, and subsequently got blood clots in the next two PICC lines.

These experiences remind me that it is not ‘normal’ to have straw access into your bloodstream. There are complications that come along with a central line. But all good things come with risks, and my central line has also provided me with an abundantly expanded opportunity to experience life.

Although it takes time, many phone calls, and appointments to manage said line, it is worth it. I am wildly thankful for each of my central lines and the healthcare providers that work tirelessly to help me manage them. It is challenging, but equally as rewarding each morning that I wake up with a body that is a little bit stronger, and far more sustained. 

Plan the Wedding

Plan the wedding and he will come…
After eight months of soul-searching, meditation, introspection, ego questioning, and actualizing risks in a previously uncharted manner, I’ve come to this conclusion: I’m getting married next year. As a woman who traces familial aspirations all the way back to my ponytail days, I can tell you that I’ve endured enormous heartbreak over my solitary lifestyle. Chronic, debilitating illness has need socialization virtually obsolete for me since graduating College in 2011. I’ve often subscribed to the belief of conditional romantic relationships; that I will share love and life when I am healthier. And yet, what kind of message does that symbolize? That one must achieve a certain caliber of existence in order to be worthy of love? This is rubbish. All of this is to say, that I’m ready for the big, forever, sunshine bursting from this seams kind of commitment. Come and get me.

Sharing is Caring

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CareALine GIVEAWAY #2
Have I mentioned how much I love the CareALine Sleeve?! I ironically organized the #GetThePiccture at a time when I did not have a PICC. We in the chronic illness communities are well aware of how reality can change drastically, and I again found myself with a picc for the first time in six years. With a stash of alluringly colorful customized garments for lines, I couldn’t help but try one out myself. Let me tell you, this is an ingenious product! The scent free, soft-as-baby’s-skin, PICC Sleeve not only helps protect my line with antimicrobial fabrics, but adds a swaddling comfort with a convenient pocket to protect my lumen! That’s why I couldn’t be more excited to be hosting another giveaway with a size 1 AND 5 PICC Sleeve and size 2 Wrap for ports. Please visit their website for sizing details.


To enter the giveaway, 1. Follow yours truly @brianabeaver1 , 2. tag three friends AND stay tuned! 48 hours and counting until the three winners are announced!


Thank You Kezia Fitzgerald!
Click HERE to enter!

Life on The Line 

 Chronic illness can make merely existing a lofty endeavor. Every ounce of energy must be rationed carefully. That’s why I am especially grateful for the energy and precious Time you will take to share your #GetThePiccture features. Thank You Allie!

Hi everyone, my name is Allie, and I’ve had a PICC line for about five months now, and I’m on my third line. I love my line for the most part but it’s also been a complicated relationship. The reason I have my line is because I suffer from Crohn’s Disease, an autoimmune disease that affects the GI tract. Recently it had gotten so bad that I was no longer absorbing the right amount of nutrition and I was steadily loosing weight. It was one of the scariest time periods of my life, I had gone through so many treatments and I wasn’t a candidate for surgery, and I honestly thought that I might be dying. I couldn’t even make it from my bedroom to my kitchen without feeling faint and out of breath. I was at the end of my rope physically and mentally. I didn’t know how much longer I could continue feeling this way. That’s when my doctor decided that is was time for me to get a PICC and start total parenteral nutrition (TPN). I never knew IV nutrition was an option, but it sounded absolutely amazing. It was a chance for me to get some of my quality of life back and stay nourished while we tested out other treatments. But as great as it was, it did come with some challenges. The first month was a huge adjustment between home healths, scheduling and getting the routine down. I was very busy and very tired. If I had to go anywhere in the evenings I had to take my TPN backpack with me and I just felt a bit weird with a tube sticking out of my arm. Even though I was still extremely grateful for it, I was just tired of looking and feeling like the sick girl. But eventually I got used to it and now it doesn’t bother me as much. My biggest obstacle with my PICC happened just a month after I had gotten it. I ended up in the hospital with an infection and a clot. When I first went to the ER I thought I would just be admitted for the standard forty-eight hours and given IV antibiotics. But I was very wrong. I ended up in the ICU for a day and in the hospital for another ten with what they believe was sepsis. I was so scared, I’d always heard about sepsis and I knew how dangerous it was, I just never imagined that it would happen to me. I’m so thankful for the hospital I go to and my doctors. I still don’t want to know what would have happened had we decided to wait or go to our small town hospital instead. So thankfully, I was released and sent home on antibiotics and I’ve been infection free ever since. Just one thing I never expected to get from having this line was anxiety. I never had many issues with anxiety before this year. But now my mind races every time I have a low-grade fever, get a dressing change, I feel sick, or my arm hurts a little. I’m terrified of getting another infection and all of the what ifs. It’s something that I’ll probably struggle with until it’s time for me to get my line removed. So I do my best to keep it as sterile as possible. But even with it’s harsh challenges, I’m still extremely grateful for my line. Since having it I’ve gained fifteen pounds and I no longer have low blood pressure or dizziness. I’ve been able to tolerate some physical activity and I just overall feel much better than I did. It’s also been a huge relief not having to obsess over calories or loosing more weight. I can choose whether I feel up to eating or not, and I’m able to give my intestines a rest when they need it. So even though it can be inconvenient at times and it comes with its risks, I believe my line helped save my life. 

Keeping It Real 

One of the innumerable symptoms of malnutrition is emotional instability. I can cry over anything. Anything. So, because hegemonic healthcare is always something to cry about, you can be sure that my eyes are working double time to hydrate my shirt when it comes to home nursing visit for my TPN, labs and PICC dressing changes. Here is a snapshot of today: ••

Home health nurse: do you have anxiety or depression? •


Me: blank stare. No, starving for the past 10 years has done wonders for my emotional capabilities. “Yes.” •


Also the home health nurse: do you have food intolerances? •


Me: blank stare. “I’m on TPN.” •

Just keeping it real!

Get The Piccture with Lauren


#GetThePiccture is growing into a diverse compilation of uncensored self-expression and empowerment. Thank you Lauren for your vulnerability and for sharing with us a chapter of your journey to healing with us!

Hi! I’m Lauren. I’ve had some type of central line consistently for about thirteen years now!  I’ve had ports, PICCs, and currently a tunneled Hickman catheter. While they’ve all got their pros and cons, they all have the one huge pro, they give me life. I rely on IV nutrition, also known as TPN, due to Chronic Intestinal Pseudo-Obstruction. Basically a long fancy way of saying my guts don’t work the way they’re supposed to. They don’t move properly (peristalsis) and they don’t absorb nutrients. 

My central lines have given me the opportunity to give my body the nutrients it needs to live my life to the fullest. I go out with friends, am able to travel, was able to plan the wedding of my dreams to my sweet husband, play with my puppy, shop for cute vintage dresses, and all types of other fun things I love to do!

Of course there are bad days, where I really wish I didn’t have to deal with this extra appendage. And I won’t sugar coat it, some days I just plain hate it. Especially when it comes between me and a super cute outfit, as I do not enjoy having my line visible on a day to day basis as a personal choice. It’s also beyond frustrating when there is an issue with my central line because it is my lifeline. It sometimes even involves a spontaneous several hour road trip to be fixed at the hospital where my specialists are. But in the greater scheme of things, I am so thankful for the life my central line has allowed me to live! And most times, I forget it’s even there because it feels like it is a part of me.

Throughout the years of having central lines, I’ve learned many tips and tricks to keep life running as smoothly as possible. Showering used to be a huge issue, I’d even have my mom wash my hair in the sink due to fear of showering with my very first port. Now I’ve come up with the “giant band-aid” method, and shower like a champ! I’ve even started a blog that I use to share the tips I wish I’d had a blog to teach me all those years ago! If you’d like to check it out, the link is prettycouchpotato.com

A huge thanks to Briana Beaver for allowing us to share our stories of our relationships with our central lines!

Misunderstood 

Opaque is the windshield through which a person with chronic illnesses navigates. There is a epidemic misunderstanding circulating the medical communities: diagnoses=proper treatment=recovery. I am constantly flabbergasted by the quixotic perspective of healing that so many medical professionals subscribe to. Were this the case, if healing was as simple as 123, I wouldn’t have spent the majority of my life saving it. I would have instead been living. It takes an unspeakable concoction of determination, support, research, intuition and who the hell knows what else to keep going. With rampant misunderstanding, judgment and injustices hurled incessantly at those who are least capable to combat them, may this be a token of recognition, validation and camaraderie.

Never Say Never


Never say never. “I am never getting a PICC line again.” This phrase has repeatedly been launched from my lips over the past six years. In an echo of PTSD, my mind seems to replay haunted memories like a broken record from my days on the line. Subconsciously, I believe my initiation of the #getthepiccture awareness campaign began as a tool for me to process stagnant energy around these memories into something cohesive and community-driven. The reframing of my conceptualization of central lines has permitted me to appreciate their value. I’ve seen through your story telling the myriad ways they can empower healing, independence and fulfillment. And what a fortunate thing! Because as it turns out, I am in need of a PICC line to make possible my continuance of treatment! That’s right, I will soon be back in the central line club! Stay tuned! P.S. I think I will be giving my PICC line a name to make this less daunting. Any suggestions? 

Giveaway!

GIVEAWAY…Almost! In between feeling like a hot mess with die off, I have been working behind the scenes to collect specialty items to soothe the soul, comfort the body, and lighten the heart. I am ecstatic to report that the generosity is flowing in, with truly wonderful gems being collected for you!

My Bundles of Love are specialty gift packages crafted for those living with chronic health challenges. With some designed for children, others for the whole family, you’ll be sure to find something to let you know you’re not alone!

 

In order to be eligible, you must:
 1. Submit a #getthepiccture feature
2. Follow me on Instagram @brianabeaver1

3. Live in the United States
Stay tuned for more information about the bundles and in the meantime, keep on sending in your incredible stories!

I’m SOO excited about the opportunity to give, give give! Look forward to apparel items with a cause, gear from CareALine and cuddle buddies, among others. STAY TUNED!!!!