My Search for a Diagnosis – and for the Support of the Doctors
Over the course of the last five months, as a mere teenager, I’ve been diagnosed with a number of new chronic illnesses: Dysautonomia (POTS), Chronic Fatigue Syndrome and Gastroparesis.
Weakness Is Not Quitting
Waking up with a chronic illness every day is the usual set of problems, the symptoms may change but the limitations are fairly consistent. The beginning and end of the day are hardest for me. When I wake up, I know I have another day of the same fight, the same disease, and when I […]
5 Tips For a Successful Life When Living With a Chronic Illness or Disability
Have you ever watched the movie “Kill Bill 2”? If so, do you remember the scene in which Beatrix Kiddo desperately tries to wiggle her toes? Well, that is kind of what I go through… EVERY. SINGLE. MORNING! I have a chronic illness in my peripheral nervous system, and it has affected my muscles too. […]
Creating Meaning and Purpose While Living With Chronic Illness
Being a Boss Lady is hard: Managing your business, other people, and a growing startup presence. Then add on top of that, managing your 3 IV infusions through your PICC line a day, oral medication, doctors appointments, a home care nurse, weekly blood works, and a slew of symptoms that seem to pop up at […]
A Thank You Note To My Nurses – Mighty-Well
DEAR EVERY NURSE WHO HAS EVER TAKEN CARE OF ME, Some of my doctors don’t even know my name, but many of you willingly send me messages to check in on me. What a difference?! My friends call me a “Professional Patient” because my pharmacist knows me by name, I am always going to my […]
It’s Never Too Early to Test For Lyme Disease & Co-infections
While working nights at the clinic, there would be moments when my mind would go blank in the middle of a sentence. I began struggling to remember words as simple as “scissors.” I thought I was just adjusting to working overnights. My parents noticed I would space out in the middle of conversations, and most days, I walked around like a zombie. I became so tired that if I wasn’t at work I would be sleeping. I was irritable and depressed but still, I chalked it up to working overnight.
The Art of Storytelling in Chronic Illness
Dana was diagnosed with myelodysplastic syndrome at the age of 18. She was a young, artistic, field hockey player that was just hit with a hard diagnosis. She attended a talk with a cancer survivor when her family member connected her with Dr. Angela Cooke-Jackson. Dr. A thought it would be helpful and fulfilling if Dana shared […]
Why I Am An Open Book About My Chronic Illness
Even before I found that I had Chronic Neurological Lyme Disease and Co-Infections, I always felt alone. I knew something was medically wrong with me, but no doctor could figure it out. Going through high school feeling like something was “extra” wrong with me was just like a brick being dropped on my already pounding […]
Insider Tips for PICC Patients from PICC Nurses
PICC nurses have a ton of valuable information for their patients. After speaking with dozens of Vascular Access nurses in the National AVA Conference (September 2016 – Disney, Florida), we summarized the top 5 insider tips for patients doing intravenous treatments! “AVA is the Association for Vascular Access, founded to support and promote the specialty of vascular access”.
Spoonie Stories: It wasn’t just “a little arthritis”
Lyme Disease hit me unaware. For a couple years my knees were swollen, stiff and painful. That didn’t stop me from walking the dogs or kayaking, but the pain made everything a chore instead of fun. I was told it was arthritis and to lose weight and do knee exercises. After those couple years of knee pain […]
Spoonie Stories: Coming to Terms With Your Disability
February 22, 2015 | Lian Najami: Haifa, Israel It all started eight years ago; I was running on the track when I was no longer able to lift my knees high enough. I couldn’t understand what was wrong with me, what had happened to my body, or why, all of the sudden, I started losing my […]
Spoonie Stories: Advocating for People with Disabilities
Miranda has 68 formal diagnoses including Ehlers Danlos syndrome, Dysautonomia, POTS, MCAD and Gastroparesis. Here is her story.Miranda has 68 formal diagnoses including Ehlers Danlos syndrome, Dysautonomia, POTS, MCAD and Gastroparesis. Here is her story.