I started learning how to help care for my mom when I was around 8. She was diagnosed with breast cancer. I really had no idea what that meant other than I was told that she had cancer and that she was going to have surgery. My dad prepared me for this by making it clear that I had to help my mom when she got home from the hospital. When she got home I was told that she had one of her breasts removed. I knew what a breast was.. my mom breastfeed all of us and I remember my mom breastfeeding my sister.
After a brief stay in the hospital after my mom's mastectomy, she came home to me and two younger children. She couldn’t lift her arm above her head for a few weeks I remember. I remember the drainage tubes. The pain and crying. I felt sad and confused, however I had to help, and I did. I had to help get things out of the cabinets, feed the dog, make sure my sister was ok, make sure my brother was ok. I was the oldest. My brother was 6 and my sister was 4. Helping to take care of them was fun. I loved the responsibility. However It was watching my dad take care of my mom that set my caregiver imprint and role for life. I remember hearing him telling her “you need to start raising your arms' ', “take your medicine”, “Eat. Eat, it's important you eat”. He wouldn’t yell. But I remember his attitude towards her being different during the times he was getting her to take medicine or do physical therapy.
Two years later it was discovered she had cancer in her other breast. I was prepared. When I was 15 my mom was diagnosed with uterine cancer. I was prepared. I knew I could help her and make sure she took her meds, I drove her to doctor appointments - I had a drivers permit - but it was really at this time I felt the pressure of the inner conflict of being a caregiver to a family member. I didn’t want my mom mad at me, however I knew I had to encourage her to eat. To take medicine. To do physical therapy. And she did get mad. Radiation and meds made her sick. Eating was difficult for her. I had to trust that we would pull through. After all, I started learning how to be a caregiver at 8.
CareAline is a company built on real life accounts of having to problem solve during a time of immense stress and illness. We continue to grow and evolve but will never forget how we were born, why we are here and why we continue to do what we do. Allow us to introduce Brian, who generously offered to share his journey leading up to our relationship with him.
Thank you Brian for sharing your story*.
-the CareAline Team
Life with a Chronic Illness
Growing up, my childhood was completely normal. I loved to play outside with friends, play sports, and be active every chance I got. When entering high school, I played football and lacrosse, two sports which I both loved and wished I could keep playing forever.
At the end of my sophomore year, lacrosse season had just ended and everything in my life seemed to be going great. That’s when my life got completely turned upside down. I started to get shooting pains in my lower abdomen and experienced a slew of other gastrointestinal issues. After missing a few days of school, my parents decided I needed to see a doctor. We were referred to one of the top pediatric GI doctors in the area and eventually managed to get an appointment.
The GI ordered a bunch of tests and it was determined I needed to undergo a colonoscopy. The preparation the night before was much worse than the actual procedure which was some of the best sleep I had ever gotten. When the doctor came in after I woke up he told me that I most likely had Crohn’s disease. I had never heard of this disease so he explained to me that it was a chronic disease that would be with me for life. When I first heard the diagnosis I was actually a little relieved to know what was wrong with me and I didn’t fully understand the consequences of what a chronic illness actually entailed
While the first few months after my diagnosis weren’t too bad, when the new school year started I got extremely sick and ended up in the hospital. My doctor tried a bunch of medications, but for months nothing would quell my symptoms. This resulted in me basically missing more than half of my junior year of high school. I would have multiple tutors come to my house to give me lessons and I obviously wasn’t able to play the sports I loved. Eventually I was started on a treatment called Remicade, which actually did seem to make me feel better. Although I would have to sit in the hospital for about two hours with an IV in my arm every two months, I started to feel like myself again.
Remicade turned out to be a great treatment for me. I was able to go back to school for my senior year and could continue playing sports. I ended up going to Tennessee Wesleyan University on a lacrosse scholarship, graduated university with honors and got a great job working in accounting. I got engaged to my beautiful wife one year out of college and my life was going perfect until December of 2018. I went to visit my fiancée around Christmas time, when my lower abdomen started hurting along with the other various Crohn’s symptoms. All I could think about was how the pain was equally as horrible as it was when I first got diagnosed with Crohn’s disease. I ended up in the hospital for five days and was told that Remicade was no longer a valid treatment option for me since my body has built up antibodies to it. This meant that we had to find another treatment option.
My doctor suggested that Stelara would be the best option. I would get an infusion right after I got out of the hospital and I would then inject myself with a shot every 8 weeks. All I could think about how great this was. The doctor found a treatment that would work for me and my life would go back to normal, just like how it had when I received the Remicade treatment. Well that wasn’t completely the case. For about six to seven months after the infusion and getting the shot every eight weeks, I was still in minor pain, but just figured the treatment was taking some time to fully kick in. About nine months after the infusion I was in so much pain and had rapidly started losing weight to the point where I lost 30 lbs over the course of the year, with more than half of it coming in the past 6 weeks. When I finally got in touch with the doctor, he stated that I needed to go to the emergency room that night to have multiple tests run because something was obviously not right.
When going to the emergency room this past month, they realized that I was having a severe flare up and had multiple ulcers in my lower intestine. They also ran tests and realized that even though I could my last shot about five weeks ago, there was no medication in my system. Meaning that this treatment could have stopped working just like the Remicade did. They started giving me a steroid to help with all the inflammation in my system and started me on fluids. About a day later, they came to the conclusion that I would need to have a PICC line put in due to how malnourished I was.
I had never heard of PICC line so after asking the doctors some questions, I decided to do some of my own research on the internet. On the website reddit.com, I follow the the r/Crohns Disease subreddit which is a community for people with Crohn’s to connect and get support from others with the disease. I figured other people had to go through the same thing so I looked for posts about people needing to have PICC lines put in to try and make me feel comfortable with the whole thing. After reading a bunch of posts about people saying it really isn’t that bad, I saw someone suggest getting a CareAline sleeve to replace the sleeve the hospital gives you. I thought it was interesting so I made sure to make a note of it.
After the procedure of having the line inserted, I could tell the mesh sleeve that they put on was not going to be the most comfortable in the long term, especially trying to sleep with it. When they told me I would need to be sent home with the PICC line to continue getting nutrients at home, I decided to go ahead and order the CareAline sleeve after reading all the positive reviews. This sleeve is honestly so much better and having the pocket for my lines instead of having them wrapped around my arm has been great. Luckily I should be having the PICC line removed in about a week, but I’m so glad I came across the CareAline sleeve as it made the last month much better than it otherwise could have been.
*This narrative was prepared or accomplished by a customer of CareAline named Brian Feeney in his personal capacity. The opinions expressed in this article are the author’s own and do not necessarily reflect the policy, position or opinion of CareAline or CareAline employees. This includes all mention of treatment modalities. The acceptance of this story and publication to CareAline’s website in no way implies endorsement.
If your child is like mine, she/he doesn’t eat much outside the beige family of foods. With peanut butter sandwiches at the forefront of her diet, it was hard to figure out what to pack for lunch when we entered the public school system. After talking with some of the other parents, I bought something called Sun Butter. For those who don’t know, it’s a similar brown spread made from sunflower seeds that looks like peanut butter with a similar taste. On her very first day of preschool, this Sun Butter sandwich came back wrapped and taped as if it was a grenade with a hasty note that said “no peanut butter!” Deeply annoyed at the time that my three year old had nothing to eat for lunch even though we had complied with the no peanut rule, I called. They explained that a child in the classroom had been hospitalized with anaphylactic reactions so they can’t take any chances and I didn’t specify that sandwich did not have peanut butter. As far as the school goes, they should have called me, I complied with the rules and my daughter should have had her lunch. That aside, it really puts the lives of these kids and their loved ones in perspective. I can’t imagine the worry that these parents must feel considering this kryptonite, essentially poison, is everywhere. I myself probably eat peanut butter several times a week.
According to FARE, the Food and Allergy Research Education center in Tennessee, “every three minutes, a food allergy reaction sends someone to the emergency room. More than 40 percent of children with food allergies have experienced a severe allergic reaction such as anaphylaxis. Results from a 2015-2016 survey indicate that 5.6 million children in the U.S have diagnosed food allergies. That’s one in every 13 kids or 2 kids per classroom.” On point with the statistics I found online, my seven year old has three friends who will suffer anaphylaxis when exposed to peanuts.
Also noted on the FARE website were the following statistics, “more than one-quarter of parents surveyed during food allergy appointments report that their children do not participate in camp or sleepovers because of food allergy. More than 15 percent do not go to restaurants, and more than 10 percent avoid child care settings or playdates at friends’ houses. Among parents of young children in the first year after food allergy diagnosis, most avoid restaurants and about half restrict social activities or travel. Mothers of food-allergic children under age five have significantly higher blood-pressure measurements and report significantly greater levels of psychosocial stress than mothers whose preschool-aged children do not have food allergies.”
Halloween is a week away and similar to years past, I’ve finished my second bag of Halloween candy. Reese’s and Snickers live in a bowl above the fridge so I can control when and where they get eaten and can facilitate proper hand washing afterward. My family members are lucky enough to have been spared any sort of allergies that we know of but we spend a fair amount of time with those who have them. As for Halloween itself, we will be participating in the Teal Pumpkin project and I encourage you to do the same. If you haven’t heard about it yet, it’s pretty easy and won’t likely cost you any more than purchasing candy.
Put a teal pumpkin on your doorstep. This can be a fun project for the kids too! If you’re not up for painting a pumpkin, you can always cut a pumpkin out of teal construction paper or have the kids draw and color a teal pumpkin to tape on your front door. If you’re running out of time, you can find teal colored pumpkins at many stores. The pumpkin will alert trick or treaters that you have non-food treats available. This promotes inclusion, support and camaraderie in your neighborhood. It will also help the trick or treater to avoid the awkwardness of declining your treats. Lastly, visit https://www.foodallergy.org/education-awareness/teal-pumpkin-project/map to include your address on the Teal Pumpkin Project map.
Some examples of non-food treats- glow sticks, spider rings, bouncy balls, bubbles, stencils, crayons, colorful pencils, pencil toppers, mini notebooks, stickers and kazoos.
By participating, you are not only supporting kids with allergies but supporting those with diabetes and swallowing deficits including tube fed children. You may also offer an alternative bowl of candy as an option. It’s an easy thing to do to make Halloween fun for everyone. For more information, visit https://www.foodallergy.org/education-awareness/teal-pumpkin-project.
Let’s see how your kids enjoyed Halloween this year! Drop a picture of your child’s costume in the comments section! Everyone is welcome! We’ll put everyone’s name in a hat and the winner will be sent a $25 Amazon gift card.
It’s 7:45. I lie in bed still and take shallow breaths. My eyes remain closed. I’m not ready to start the day. Movement forces me to acknowledge the pain that’s hovering, waiting for me to feel it. The kids will be up any minute. I swear the little one is able to hear me blinking from her bedroom across the hall. Once the baby is up, everyone else is up too, starting their day, all demanding my time and energy. I’ll have to smile and be pleasant and pretend that I’m not completely exhausted, completely overwhelmed. The big one will want to know what we have planned for today after school. She doesn’t know that I have six dollars in my checking account because I wasn’t able to work much last week. She doesn’t know that I barely slept two hours last night as the pain had me tossing and turning, again. Nor should she know.
(thoughts and statistics on why I probably won’t touch your cell phone)
We’re all taught from a young age (or so I hope) to wash our hands to remove the harmful bacteria that can make us sick. Signs line the bathroom walls in the restaurants we bring our families, reminding the individuals that handle our food to wash their hands. Us moms carry hand sanitizer as we carte our sweet little germ balls to school and ballet. We wash our dishes and wipe our counters clean and maintain proper hygiene all in an attempt to keep healthy and prevent the spread of germs and disease.
You are sick. Probably sicker than you have ever been. Now you are being told that you are going to have Picc line inserted. It’s going to be there for a matter of weeks and you are responsible for some of the care and maintenance of this medical device. What now?