“Sometimes things don’t go right during access but the pain and fear I feel only last a little while. Then I forget about it when the needle is in.” — Judi, 8 years old, advocates with her motto, “NEVER give up!”
Let’s show Judi @judithmariesjourney our support, encouragement and boundless love by leaving her a comment below. We understand your journey, honor your feelings, and believe in your awesomeness!
Much gratitude to @judithmariesjourney for sharing with us a snippet of your journey to remission. We are honored to cheer you on!
Parents of children with central lines are encouraged to participate! Please send me a message to join the Get The Piccture movement on IG @brianabeaver1
I’m pleased to share with you this Get The Piccture feature by Abby. What is Get The Piccture? Learn more HERE. With one glance at the photo below, Abby’s spunk, strength and confidence are evident. What an honor it is to share her perspective. Cheers to you, Abby!
To submit your own feature, please contact me via Instagram @brianabeaver1
Having to get a central line has been both a blessing and a nightmare. I avoided it for so long but knew the day was coming. I first had a PICC line in my arm and now have a Hickman power line in my chest. Though it is nice not to have to be poked multiple times and being able to stay out of the hospital more often having a central line is not all sunshine and roses. It’s kind of like a love hate relationship. I’ve had a central line for about eight months now and I’ve battled sepsis twice. It’s crazy to think something that saves my life almost took my life.
I have a central line because I do daily lactated ringers fluids and saline fluids three times a day, daily medicines and sometimes antibiotics. I have a lot of health issues but some of the more serious ones are gastroparesis, POTS, SMAS, crohns and EDS. The one thing I dislike the most about my central line is the up keep of it. I’m not allowed to swim or get it wet so showering is a nightmare. I’m not allowed to do certain things I used to be able to do before getting it, but I don’t let that get me down. I hate having to have a central line, but it saves my life and keeps me out of the hospital so I’m grateful to have it despite the negatives of having to have one. Also, I wish people knew just because I have a central line and feeding tubes, it doesn’t make me a different person. I’m still me. I’m strong, brave and a fighter. I don’t let my illnesses or medical devices define me as a person.
To learn more about the amazing Abby and to view additional photos, follow me on Instagram @brianabeaver1
Attention chronically awesome communities!
If you’ve had drop out of college because of chronic illness and are looking to return, or have recently re-enrolled, I am available to support you! Knowing your legal rights for disability accommodations, tips for self advocacy, recommended adaptations to empower and facilitate your success without sacrifice are some of the things that I can help you with. I understand these challenges intimately and have found success in navigating the educational realm! I graduated summa cum laude from California State University, Chico in 2011. I found unique accommodations and arrangements to make possible my dream of completing my education with cerebral palsy and multiple health challenges.
You can do it! I can validate, listen, guide and celebrate with you along your unique educational path.
(P.S. I cofounded a nonprofit organization serving children with and without disabilities. This flyer is from a disability awareness and empowerment workshop we hosted in 2010.) Income generated from these services would support my medical treatment.
Please comment for more information or email me at firstname.lastname@example.org
Against medical advice, my mother made the decision to take me home to die from Stanford Hospital six years ago today. To wither away completely within the confines of indifferent strangers would have made an unimaginable reality somehow worse. Since that time, I’ve credited my still persisting pulse to the genius of a doctor. Now, with some distance, with some sleep and internal evolution, I’m changing that story. I am still here because of me. I’ve chosen to keep breathing, keep eating, keep believing, even when I’ve screamed and begged for the crimson flowing inside of me to quiet. My survival is nobody’s victory but my own.
Image from Life in the Lyme Light. Writing by Briana Beaver
I’ve had my port for one month now. It all happened so fast. I was on my way home from a lengthy hospital stay out of state after open MALS surgery, arms completely covered in bruises from multiple failed IV attempts and blown veins, and got a call from my favorite Interventional Radiology doctor.
My cardiologist decided it was time to place the port I had been putting off for a while so we could continue my weekly infusions, especially now that my GJ tube had to be removed for surgery and could not be replaced for a while. The IR doctor was going to be away for a couple weeks and wanted to check in and make sure we had a way for me to get at the very least some hydration while he was away. We wanted to put the tube back, but he did see why the surgeon wanted to wait, so he moved some things around on his schedule and arranged to place my port the very next morning.
To be completely honest, this port absolutely terrified me for the first week. I only let my home nurse touch it and sent her panicky texts just about daily (she’s a saint). I was getting 2L lactated ringers, but that wasn’t enough to stop my health from declining. I needed nutrition, and I needed it fast, so my GI sent me into the hospital again and we started TPN. This really forced me to get used to using the port and having it accessed.
It has been accessed 24/7 for 2 and a half weeks now. I would by lying if I told you I wasn’t still nervous about it, but I can say that having this port and starting TPN has been a literal lifesaver! I am slowly getting stronger and getting enough energy to allow my body to not only heal from surgery, but to start getting my life back! My nurse and I even found a way for me to safely return to my job at a horse barn and get back into the field of occupational therapy!
In my mind over the past few years, I had completely made central lines and TPN out to be the worst thing that could ever happen to me, but I’m here to say that is not true—being severely malnourished with beat up arms and no usable veins was a lot worse. Central lines are in fact something you can live a full life with, you just have to be mindful and a bit creative!
Follow me on Instagram @brianabeaver1 to learn more about Sara and other chronically awesome features.
This Get The Piccture feature written by guest blogger Victoria Faling
Hi, I’m Victoria! I live with a host of chronic illnesses mostly stemming from Lyme disease and tick born infections. I’ve had both a picc line and port (currently living with a port) and it’s been a love-hate relationship with both. When I first got a picc line it was for IV antibiotics to treat chronic Lyme. I was doing infusions twice a day for 7 months! At first, I was excited to get it, honestly, because it meant treatment and hopefully feeling better. I was really thankful to be able to have the line and receive treatment for my illness. But, it wasn’t always easy.
Having a picc meant being accessed all the time, itchy skin from the dressing, and not being able to use my right arm. It meant being attached to IV medications for a lot of hours in the day. It was a huge celebration when I finally got it removed because I was free to use that arm and shower and swim! I was so ready for it to come out and so tired of hardcore treatment. A couple years later, I decided to get a port placed so that I could receive extensive alternative IV treatments for a still lingering chronic Lyme infection. My veins were shot and, again, I just wanted to get better! I feel blessed to have my port and, again, have access to IV treatments. Although being sick and having to have a central line sucks, I’m grateful that I’m able to have it if I have to be sick and receive IV treatment. It makes IV’s so much easier and less painful. It allows me to do treatment in the comfort of my home. It gives me a lot more control over my treatment. I prefer my port over my picc line because I can de-access my port to shower, swim, or workout. I’m easily able to access it again when I need to do treatment, though. I also love that my port can last up to 10 years. It means that even if I reach remission, I can leave it in in case I relapse or in case of emergency. It’s like a little back-up plan implanted in my chest. Of course, having a central line comes with its issues.
I’ve had an infection in my port which was scary and makes me a little nervous all the time now. I’m constantly checking it for signs of infection when I never used to worry. It also hinders some daily activities and I have to be careful knowing it is there so that I don’t injure the port itself or myself! And it’s a constant reminder that I have health issues, which can make me really sad at times and just want to get it removed. But in the end, I’m really thankful for Ivy (my port) and the treatments she has allowed to receive.