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The Loneliness of Chronic Illness

No man is an island... unless that man is chronically ill.  Chronic illness makes islands of all its victims.  Y'know that feeling eve...

Saturday, November 24, 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 at best.

So I went to my new neurologist with my hopes high but my expectations low, based on the assholery I had dealt with in the past, I was just about at my wit's end.  Fortunately, this neurologist was wonderful.  She's an adorable little Eastern European woman with a heart of gold.  I want to adopt her as my grandma.  She ordered repeat MRIs and a lumbar puncture (aka a spinal tap).  The MRIs didn't show anything, and the spinal tap (which actually went great and wasn't painful at all because the doc who performed it was some kind of wizard) showed nothing except a dormant virus that we decided was chicken pox, which I had when I was 4 (see photo for proof).
With everything coming back clear, my lovely neurologist referred me to the UCI Neuromuscular center to test me for different neuropathies (nerve damage).  The doctor she referred me to was said to be a genius and at the tippy top of his field.  Everyone talked about him like he was some kind of God... which probably contributed to his God-complex.  I had had terrible experiences at UCI in the past (see my previous blogs), but we were assured that this guy was the real deal.

He seemed to know what he was talking about and he had a decent-ish bedside manner so we took that as a plus, and he ordered tests including a repeat of the dreaded EMG.  The EMG was no easier the second time around.  In fact it proved to be more trying because my doctor's colleague stood in the room while I was being stabbed by needles and tasered and said in the most disgustingly nasally voice I've ever heard, "I know it's annoyingggg." Yes, I totally yelled at that lady to shut the hell up. I also got a punch biopsy done on my legs which is a test in which they hole-punch your leg in a couple places and send the skin off for testing.

Everything came back clear (go figure) and he told me I would have to go up to Stanford to do Autonomic Nervous System testing because I had Autonomic Neuropathy.  At this point I had simultaneously been trying all sorts of out-of-insurance treatments, such as massage and acupuncture, neither of which went very well due to the fact that I was in too much pain to be touched.  Then, my wonderful mother stumbled across the Loma Linda Neuropathic Therapy Center, and that's when things began to take a turn for the better.

Saturday, November 17, 2018

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 pain in the meantime, nothing.

At the time all of this went down with the neurologist, I was seeing a UCI pain management doctor.  This doctor was overall super unhelpful but my mother and I worked our asses off to get a referral to the UCI neurology department.  After lots of bartering with insurance we finally got in, and we put all our eggs in this doctor's basket.  This man was old, experienced, and a medical professor as well as a neurologist, so we had insanely high hopes.

We sensed something was off when we met the nurse, but we never could have predicted the jackassery that was to come.  First of all, that nurse didn't know how to take a pulse.  I'm serious.  A working, registered nurse, did not know how to take my pulse.  He said something about having to count to 15 and multiply by 3... the number he ended up with was like 77 which was neither a multiple of 15 nor 3, and it wasn't even close to what my pulse actually was.  You know how I know that? Because the blood pressure machine took my pulse and said it was 112.  But this asshat decided the technology was wrong and we ended up negotiating that he write down something in the 90's.

Then the doctor came in, looked me up and down, and judged the fuck out of me before I could even speak.  I spent 10 minutes pouring my heart out to that doctor telling him all of my symptoms and how I was getting so much worse so quickly.  I spoke about my quality of life and how I was housebound and nearly bedbound.  Clearly he didn't hear a word of it because as soon as I shut up he said the following: "You're too young and pretty to be sick, you'll continue to improve, stop seeing doctors you're just wasting everyone's time."

I left that appointment absolutely devastated.  I felt sorry for myself, and I also felt disgusted that this man was in a position to teach his fucked up methods to people who were studying to be doctors.  Fortunately I didn't take his stupid ass advice and stop seeing doctors, and I pushed on to get a new neurologist referral, and this time I made sure to request a female because at least no woman would ever tell me I was too pretty to be sick.

PS- There are many more parts of my story to come.  It has been a long journey, and due to this blog being all about candor, I don't want to leave any part of my journey out.  I know for a fact that the little things not only matter, but they're often what people most relate to. However, I am committed to making my posts easy reads. So please bear with me as I continue to try to make this blog as easily readable and as honest as possible.

Saturday, November 10, 2018

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 gave me a list of food I couldn't eat and meds that turned my pee bright turquoise.  Cool.

I ended up having to call out of work (I was a Birthday Party Character Actress at the time) to go to the ER a couple times and was told I had bladder infections and possible kidney infections, but the cultures never grew anything when tested so then I was told it was nothing.  Got my third shot of Lupron because my doctor didn't believe there was a connection between the drug and what was happening to my body.  He referred me to a kidney specialist to see what was up.  I went back for my appointment to get the fourth shot and my mother and I both agreed that we needed to stop the treatment ASAP because I was deteriorating fast.  The mid-back pain was spreading down my back to my legs and the pain was sharp and constant.

Kidney doctor ran tests and found nothing, so he referred me to a Rheumatologist (joint doctor).  The Rheumatologist's nurse felt me up and immediately said "oh you have Fibromyalgia!" I was elated to have a diagnosis, especially one that's generally a diagnosis that takes people years to get since it's generally a diagnosis of exclusion. The doctor  put me on nerve pain medication, referred me to a physical therapist, and told me to come back in a couple months.  The physical therapist pitied me, did TENS unit and ultrasound treatment, and didn't give me any exercises because I was in too much pain.

By the time I returned to the Rheumatologist I was in a wheelchair.  Too weak and in too much pain to walk.  The Rheumatologist tested my strength then quickly revoked the Fibromyalgia diagnosis, since Fibromyalgia is not degenerative.  He looked me in the eyes and said "there is something wrong with you neurologically." He referred me to a Neurologist, and that's where things got worse.

Saturday, November 3, 2018

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.  We ignored it until it refused to be ignored.  Then we went to a doctor who prescribed birth control and advised that we ignore it some more.  Well, the birth control didn't help so we tried another variation, and another, and another... until the doctor decided it was high time I saw a gynecologist (Finally!).  Fortunately I was on medical leave from college for the sequence of events that followed (see previous post to see what the college fiasco was).

The gynecologist took one look at me, my family history, and my Ashkenazi Jewish blood (for those who don't know, having Ashkenazi Jewish blood means you're medically screwed), and he decided it was high time to test for Endometriosis.  The only way to diagnose it is via a small surgical procedure called a laparoscopy, in which they stick cameras in your bellybutton and abdomen to look around in there.  In a laparoscopy to diagnose Endometriosis, there's the lovely added measure of sticking metal tongs up your hoo-ha to move your uterus around so the camera can get a look at all sides of it. Fortunately I was out cold for the whole thing.

On February 19, 2016 they performed the surgery and they found lots of Endometriosis lesions so I had a definitive diagnosis (yay!).  A month later I was set to begin the treatment prescribed by my doctor. The doctor gave me no information on the treatment apart from: "it's a drug used to treat men's prostate cancer and also endometriosis because it starves the body of estrogen. It will put you into a false menopause." I asked about the side effects, and was told that the only side effects were hot flashes and moodiness.  So, in March of 2016, I received my first monthly injection of Lupron.  Not long after, my entire body completely fell apart and my life became a living nightmare.