What is it like being diagnosed with a chronic illness at a young? It's awful being diagnosed at any age, but terrible being young! It has really robbed me of a lot. My story begins in February of 2007. That was my freshman year of high school, but I am first going to talk prior to it. The summer of 2006 I just started lifting weights and got serious about working for football. I've always had a solid build and played sports. I was able to put 15 lbs of muscle on in three months, and I had a great season. Little did I know something terrible was brewing just a few months lster. It all started when I was having repeated trips to the bathroom. I did not think anything of it at first. Then I started to develop sharp stabbing pains in my stomach! My weight was started to drop. I didn't really tell anyone though. Eventually I started bleeding heavily. My mom saw the blood in the bathroom! Enough to look like a crime scene, so she made an appointment with my pediatrician at the time. He wasn't too concerned at first about the weight loss because according to him my weight was correct for my height. Eventually people started to comment how pale I was looking. She took me back, and she told him that he needed to labs. I was anemic. He then referred me to a gastroenterologist. She did a whole workup of tests, including a colonoscopy. We got the diagnosis of ulcerative colitis. My mom suspected it. It hit me like a freight train. I never saw it coming. I was pissed off, and I was scared. I did feel like a normal teenager. I thought I had my life figured out after high school, but boy, was I wrong. I wanted to go into the military. Two years later my GI tested for a liver disease called Primary Sclerosing Cholangitis, but I'll talk more about that another time. They say I'll more than likely need a liver transplant, and that concerns me. I did have a few good years of health after that though, as I was able to play football and workout! Fast forward to 2015, and I was slapped with another diagnois called Gastropareisis. It has severely impacted my ability to eat normally and stay hydrated. Everyday I deal with nausea and vomiting. I am thankful I can still eat though. Being ill has changed me so much! John Lennon said, "Life is happening when we're busy making plans". That's okay though because we are suvivors, and we have to learn to adaot with our situations, and it's certainly not easy being young and ill. Many of you can sadly related.
-Ross Something that I pride myself on being able to do is pull off the near constant smile, the always laughing, and always trying to find the humor in things; Even more so with multiple chronic illnesses. About two weeks ago I met with my electrophysiologist. He is such a wonderful physician and listens to me and I enjoy our visits. We were doing a follow up with my medicine to see how we are doing with the heart rate control. Not great, the extended release is wearing off by mid afternoon and my insurance company hasn’t approved the new medicine yet. He told me he doesn’t get angry a lot, but when a patient needs something and has failed everything else and they are continuing to give him the run around he gets upset and angry. He was visibly upset with this and he apologized. I just shrugged it off. I know how insurances are. Being a nurse you get to advocate for your patients and sometimes that means making that dreaded phone call to the insurance company. I know the process, I’ve done the process, and I’ve waited with the patient eagerly checking email after email and letter after letter. He told me that he couldn’t believe that I could still be so happy, still smiling and laughing and so understanding with everything I’m going through. I told him I don’t have a choice. It’s not anyone’s fault that I’m sick. Being mad or upset isn’t going to change the fact that there isn’t a cure for any of my multiple conditions. I can’t place blame on anyone or anything. But let me let y’all in on a little secret: I’m absolutely angry, frustrated, wanting to cry with every breath, wanting to shut everyone and everything out. I can’t help it. I try so hard not to let it show, but as anyone with a chronic illness knows sometimes it just gets to you. You have to have your pity party, eat ice cream, watch your favorite movies, cry in the shower, and scream into a pillow. You have to let it out. You just have to. It’s one of my secrets to be able to control myself the way I do with the smiling and humor. I used to just pour myself into work and let it out that way, but I haven’t been able to work since July of 2017. It just isn’t an option anymore. I’ve had to just learn to take what I’m feeling, let myself have a little pity party, and move on past it. Even though the life we live may not have the best quality, we still have to make the most of it. Life is too short to stay angry all the time and try to find someone or something to blame. So take time for your pity parties. They are okay to have! We are warriors and we have to do what warriors do. Keep fighting.
-By Savannah *I think you should stay: I promise it gets easier once you decide to get help- I promise you can heal from the darkness.*
There once was a girl whose life fell apart over and over and over until one day on her 19th Birthday she decided she really couldn't take the pain of all the endings so she got a bunch of pills, her favorite drink to swallow them with and her pillow and teddy bear and went to be alone and die. On the way to the location she had decided on she passed her Mom in her car and took it as a sign that her Mom didn't notice her so she kept on with her plan and tried to kill herself on her very own Birthday. That girl was me. There were lots of reasons why this happened but basically I was trying to kill the pain in both my body but especially my mind: my physical pain tortured my mind. I texted a friend to say goodbye as I drifted off to what I hoped was forever sleep and my friend ended up finding me and getting me help. I remember the EMTs making me drink charcoal in the ambulance and I kept spitting it out. When we got to the hospital I realized how badly I had wounded my family. I remember my sister who I always had a difficult relationship with came to the hospital and I was pretty surprised that she was there. Despite realizing that I hurt my friends and family my pain was a lot deeper than my desire not to hurt the people I loved: I actually ended up attempting suicide at least 5 other times over the next 8 years (I don't care to count how many times I attempted because it's really sad to me) My mental health was really up and down for awhile and then it got really bad until I was eventually diagnosed with Borderline Personality Disorder. I think the worst part of BPD was how I'd be happy and one tiny thing would flip my mood and make me decide I wanted to die. All of these symptoms were heartbreaking for my family and really embarrassing to me: so embarrassing that I didn't want to own my mental illnesses which prevented me from healing. If you can't admit you have a mental health problem it's not really possible to get better from it. I was hesitant to admit I was mentally unstable because there is a ton of stigma surrounded by mental illness, especially BPD. The #1 thing people with borderline are called is narcissistic and if you get to know me you know that although I'm overly sensitive I'm extremely kind and thoughtful. Eventually I decided to go to a DBSA*** meeting (Depression Bipolar Support Alliance) because my Mom was going to the meeting for friends/ family members of people who have mental illnesses. She went for 2 years before I finally caved and went to the patient meeting: I was mortified that she went to these meetings because of ME. But DBSA was what turned everything around for me because I finally admitted I was not ok and that I wanted to get better. For years before I did DBT*, COG** and private therapy but they didn't really help because I didn't really want the help. I'm happy to say that I don't have any Borderline symptoms at all anymore except that I'm pretty sensitive and I haven't attempted suicide or been inpatient psych since 2015. I also don't require regular therapy anymore but I still keep up with my Psychiatrist and am on an antidepressant and a sleeping medication. If you are struggling please don't hesitate to reach out and if you know someone who is mentally struggling please don't judge them but lovingly guide them to resources. I believe by sharing our stories we can end the stigma associated with mental illnesses so in the future people struggling won't be afraid to get therapy or go to a support group. 💕Rest in peace Anthony Bourdain and Kate Spade 💕 *DBT or Dialectical Behavior Therapy is a set of skills that center around mindfulness, emotion regulation and distress tolerance: this therapy is especially beneficial for people with Borderline Personality Disorder. **COG or Cognitive Behavioral Therapy is a treatment method designed to shift faulty thoughts and behaviors to healthier ways to deal with problems and stress. *** DBSA stands for Depression Bipolar Support Alliance: it is a support group made for both patients as well as friends and family members of people impacted by mental health issues. To see if there are meetings in your city simply Google "DBSA" along with the name of your city or region. - Written by Sarah Wheeler by Savannah Ellis Nurses week is May 6 through May 12 this year. It’s a time when nurses are often praise for their work, showing appreciation, and gratitude. Nurses are an amazing classification of humans. We are our own species!
From the time I was young, I can remember wanting so badly to become a nurse to help others because I had been helped so many times. I stayed sick, but I always had wonderful nurses and staff to take care of me! My ninth grade year of high school was kind of my point to where I just realized “Yes! This is the career for me.” I was the mom friend of our group (and I still am!). Taking care of others always put a joy in my heart that left me beaming for days. From seeing a baby smile at me, from helping a toddler overcome their fear of a needle because I was the one to give them a shot, to my elderly patients that always thanked me for taking the time to listen to them because most people don’t anymore. In 2015 though my life flipped completely. In 2014 I started having GI testing because we were certain it was my gallbladder. Lots of pain, no answers from tests. My CRP and SED rate (inflammatory markers) were elevated in February 2015. They are still elevated. After symptoms continuing to worsen (dizziness, palpitations, headaches, blacking out, numbness, tingling), I finally went to my primary care and they sent me to neurology. I was diagnosed with POTS after a tilt table test. As a nurse, you learn that things can go wrong with the body as a whole, each section or system, even down to the cell itself. I did not learn about this in nursing school. I had never heard of it! My neurologist had to write down the word “dysautonomia” for me. I googled, I researched, I took my medicines. I continued working as a full time nurse until December 2015. I started having seizures at work. I remember coming to and having my coworkers around me and the paramedics coming in to check me out. I thought to myself this isn’t supposed to happen. I’m supposed to be the one taking care of everyone else! I wound up in the ICU so they could get the seizures to stop. There was an immense feeling of guilt. These people around me are having to take care of me.. AGAIN! This wasn’t supposed to happen! I wound up starting a new job in January 2016 with a wonderful practice. I was diagnosed with EDS in April of 2016. I remember thinking okay, I can still work, I can still do this. I’m not going to let anything else happen so someone else has to take care of me. Unfortunately as we all know with chronic illnesses, that is not the case. I continued to decline. I was having to miss more work for more doctors visits, passing out, days where I couldn’t move due to the giant cloud of pain that enveloped me. I had to stop working July 2017. It’s been almost a year. This week is nurses week. A time where nurses are appreciated and praised for doing what they do. I feel so guilty for having to leave the profession that I love because my body ultimately said stop. I’ve gone over this so many times through my head. Guilt. Burning compassion for others that lingers. More guilt. I’ve had to tell myself to stop, and that I can’t take care of others if I’m not able to take care of myself. I have to tell myself that I’m still a nurse, even though I’m not physically able to work anymore. I try not to let the guilt of leaving behind my patients and coworkers get to me, but there are days when you can’t help but let it come out. Take a moment this week to thank your nurses that are by your side. Tell them that they are appreciated. Thank them for what they do and for listening to you when you need to talk. I can tell you it will make their day shine bright. I know it did mine. Trigeminal Neuralgia is a thief. Out of all of the diseases I battle, Trigeminal Neuralgia is the biggest jerk I've ever met because it makes it hard to smile and has forever changed my dimpley, sweet smile.
Beneath the surface: My face is stiff from Botox treatments, swollen from steroids and it's just not what it used to be because TN sucks. 3 years ago I had a radiation surgery that "fried" my Trigeminal Nerve and I'm pretty sure that also altered my appearance. It feels different to smile... forced, uncomfortable and unnatural. Sometimes people don't recognize me and it's embarrassing. Sometimes people make comments like "Your so much prettier when you smile" and it hurts. Although the treatments for this disease have changed my appearance I'm super thankful because on most days I'm in a lot less pain. But tonight things are very bad and I don't feel like myself: in fact I feel pretty "Dark and twisty". You see I've been trying to kick this pain in the left side of my face for the past 6 hours. I'm exhausted but it feels like my face and jaw are being electrocuted so I'm wide awake. I've tried multiple medications including muscle relaxers, anti inflammatories and opiates. I've tried essential oils, pain salves, CBD, ice, heat and the list goes on. I've tried to distract myself with art projects, making care packages for others, watching movies, etc and nothing has helped... its 3 am and I'm starting to panic. What if I can't sleep at all? What if the pain gets worse and I need to go to the ER? Who will take me? Will the Dr be compassionate or asshole? Currently I can barely open my jaw, I'm unable to brush my teeth, eat/ drink and I'm insanely nauseous from the pain. I'm tired. I want to sleep. My face hurts. I cannot cry because that will make it worse but I'm starting to panic... This is a lot for anyone to stress about at 3 am and although it's not "fun" it's become my job because I'm 30 and stuck on permanent disability. I just really miss my cute face. I might not smile the same as I did at 16 but these disease has made me resilient and for that I'm thankful. Written by Sarah Wheeler April 24th, 2018 What is your name, age and what are you diagnosed with? |
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