Showing posts from November, 2018

My Illness Journey Part 4: Being Bedbound

Hi I'm Kayla, and I was bed/housebound for a year and a half.

By the time I got to my third neurologist, almost a year had passed since the onset of my symptoms.  At this point I was 100% wheelchair-bound, housebound, and mostly bed-bound.  I had been sent to a new physical therapist who refused to touch me until I got a diagnosis, but he was helpful in that he acknowledged that my doctors were all idiots and there was actually something physically wrong with me (it was awesome to know I wasn't crazy!)

All the bedrooms in my house are on the second story, so the stairs proved to be a worthy adversary.  In order to get up and down, I would have to sit on my ass and either slide down or push myself up with my arms one stair at a time.  It was exhausting.  Actually, everything was exhausting.  I could barely even shower once a week and that's with a shower chair and collapsing on my parent's bed for up to an hour afterward.  Needless to say, my quality of life was dismal…

My Illness Journey Part 3: "Too Pretty to be Sick"

Hi I'm Kayla and according to two separate medical professionals, I am "too pretty to be sick."

So picking up where I left off, I went to a neurologist. Rolled in there in a wheelchair hoping for answers, got condescending remarks (including one that everyone with a chronic illness is all too familiar with: "it's all in your head"), an MRI ordered, and an EMG ordered.  For those who don't know what an EMG is, it is a medical procedure created by the devil himself in which the patient is literally electrocuted and needles are jabbed into the muscles and maliciously wiggled around.  It's supposed to test how your muscles and nerves conduct electricity, but in reality it just tests your pain tolerance and your patience.  Both those tests came back clear which sucked because then the doctor said "you need to find someone smarter than me" and literally pushed me out of his office. No referral, no recommendations for how to handle my life and my…

My Illness Journey Part 2: Menopause at 18

Hi I'm Kayla, I am 21 years old, and I have been through menopause.

So, picking up where I left off in Part One, I began receiving monthly shots of Lupron to treat my Endometriosis.  The first month I had the side effects the doctor told me about (i.e. hot flashes and other menopausal shit), and I began to feel fatigued and achy.  The second shot took more of a toll, I began to get mid-back pain which I thought might be my kidneys because it was different than my normal back pain (I had been seeing a chiropractor since the age of 12 for what I was told was "not quite scoliosis" and I have since been told is indeed scoliosis).  The gynecologist told me not to worry about it and he referred me to his nurse practitioner who was a specialist in something called Interstitial Cystitis which is an inflammatory bladder disease that often accompanies Endometriosis.  She tested me and gave me my first experience with a catheter (10/10 do not recommend), diagnosed me with IC and g…

My Illness Journey Part 1: Painful Periods

Hi I'm Kayla and when I was 13 years old I got my period.

No, it wasn't a magical ordeal straight out of "Are You There God? It's Me, Margaret." It was your pretty average period.  Then as time went on, shit got real.  I started having to miss days of school because of period pain.  There were days I could barely get out of bed.  One of my aunts has Endometriosis [a chronic condition in which the tissue that lines the inside of the uterus goes rogue and grows wherever the fuck it wants, usually on the outside of the uterus and intestines], so we all just assumed that's what I had, but we never did anything besides actively try to ignore it for 5 years.  My whole family has a tendency to be in denial about stuff until shit hits the fan.  We sweep things under the rug, and don't do anything about it until the rug is five feet in the air atop a haystack-sized mound of dirt, dog hair, and unsolved problems.

So that's how it went with my Endometriosis.  …