March is Multiple Sclerosis Awareness Month. MS is an autoimmune disease in which the body attacks the myelin protective coating around the central nervous system due to an overreaction in the immune system.
It causes fatigue, loss of muscle control, spasticity issues, cognitive impairments, balance impairment, muscle and joint pain, spacialawareness issues, mental health changes, food sensitivities, pin pricks, cramping, numbness, and can lead to immobility – just to name a few of the things we deal with. Everyone who has MS is affected by it differently; we can have the same symptoms but different levels of severity. Some people have symptoms others don’t. Symptoms strike randomly for various lengths of time. Some researchers believe it is genetic, while others believe it’s brought on by environment. There is no cure for MS, though it can be controlled through a strict diet, exercise, and some patients choose to take disease modifying treatments including chemo.
It is diagnosed through MRIs and a specific protein found in the spinal fluids through a lumbar puncture.
March 25, 2018 I was diagnosed with Multiple Sclerosis. It was a diagnosis that broad sided us – Josh and myself. Symptoms started shortly after a cold in January. They started with a glittery light show in my left eye; my shooting eye. Symptoms appeared one by one.
I had a speaking job for TNPPA’s spring workshop just a couple of weeks later. I was the keynote speaker on the opening night. I walked down the hall way of the convention center feeling like my feet kept being pulled left. I chalked it up to just having vertigo. That night was my 2-hour program. I thought I had covered all of my information. I said goodnight and headed back to the room. I looked at the clock by my bed and realized I had only spoken for 45 minutes. I was sure I had covered everything; looking at my notes I missed half of it. Of course, I went to find the organizers and apologized. In 4 years of speaking at photography conventions I had never butchered a program. Over the weekend I noticed the balance issues becoming more severe.
The following week I was still dealing with what I thought was vertigo. I googled home remedies and found a maneuver that was supposed to fix it. I tried and got instantly nauseous – it didn’t fix anything. My next idea was to make an appointment with my neuro-muscular massage therapist. She is a wonder woman. She’s worked my dislocated ribs back into place, straightened my shoulders, fixed my back...she’s amazing! I spent an hour with her working on my ears and neck to fix the “vertigo”. When I got home, I noticed the left half of my tongue was numb and when I was putting up dishes my left arm/hand would get to a point when raised towards the glass cabinet and snap backwards on its own. I called her again, rushed back over to get fixed again.
That weekend I had a booth at a local women’s business expo. During packing on Friday I rolled 2 backdrop and had to stop. I was so fatigued I could go any more. Josh helped me finish packing and setting up my booth upon arrival. Saturday, I couldn’t walk straight, I had brain fog, I was exhausted, and my mouth was numb. I was a mess. My best friend came down from Chattanooga to help me at a women’s business expo. People were asking me basic questions about my business that I couldn’t remember the answers to. I typically have a good amount of bookings during these events, I didn’t have a single one. People were calling my family members saying they saw me there and I wasn’t acting right. That evening my bestie’s husband and twins came down to help pack up and to spend the rest of the weekend with Josh and I – all 6 of us went out for Chinese then back to the house. Her husband kept saying he had seen people with my symptoms at his work (a medical office); they had stoked. There was no way that had happened to me, I just had vertigo.
The next morning, I woke up with all the same symptoms, more severe, and now the left side of my face was numb and swollen. Josh, the bestie and her husband all were convinced I had to go to the hospital – something wasn’t right. I went to get ready for the day, protesting, when Josh came into the room and told me I had two choices. “Cartersville or Kennestone; where are we going?” I opted for Kennestone – off we went.
Upon arrival Josh and The Bestie came back to the ER room with me. Between the ER nurse and information taker came in we had a visit from an ER doctor – this was only about 30 minutes after walking in to the hospital – tell me he thought I had either had a stroke or MS. He was sending in another doctor and they were going to run a few tests, get a chest xray and EKG, then admit me in.
The Bestie and I do a steampunk theatre show. Totally a random statement at this point, but it’s an important back story bit of info.
Apparently, I put the hospital gown on backwards. The opening goes in the front...who knew?? Not I. The nurse doing the EKG told me she’d have to lift the gown to get to my chest; if I wanted Josh and The Bestie to leave. She didn’t know how we were related. I tell her Josh is my husband and that’s my bestie, they’re fine. The Bestie blurts out “It’s ok! We get each other into corsets all the time, we’re performers together!” The nurse’s face was priceless LOL! I quickly explained our theatre company back story. I swear she thought we were some OTHER kind of performers.
The next doctor came in and had me do some tests with my eyes closed. Touch my nose, arms out with palms up – I failed. I missed my nose; my arms slowly sank down without me knowing. He walked out saying “You don’t need a medical degree to see you have MS”.
A few hours later I was transferred to a private room in the Spine Injury wing. Josh and The Bestie took up residence in not so comfy chairs. Friends and family brought us supplies since we didn’t pack. The Bestie’s husband and twins had already headed home.
Monday morning came early with the first of MANY visits from the 3 am vampires – they rolled their little clinking carts in full of empty test tubes. They sucked out the first vials of blood; they would take 45 over the week. Throughout the day I met my neuro team, day nurse through a nice shot of Heparin to the belly button, another general doctor, and the physical therapist. The PT brought out a cane and was determined to teach me how to walk with it. I was determined not to – I was given two perfectly good legs and feet and would relearn how to walk on my own. I didn’t need a third leg to keep up with. By the end of the day I was on the schedule for my first 4 MRIs on Tues.
More 3am vampires, the “normal” routine of shots #4, 5, & 6 of Heparin in the gut. It’s MRI day – the room I was supposed to go to was over booked so they took me to the Women’s wing for brain and cervical spine x2 rounds of each. I had never been pushed in a wheel chair before, it was an odd experience. I felt helpless. At one point we were next to another woman in a wheelchair (looking like she was is as good of a mood as one can be in a hospital) and her nurse assistant, I asked if she wanted to race LOL! We couldn’t convince our pushers to go faster. You might as well find the fun where you can, right?! That afternoon I was also subjected to an EEG (brain wave readings) – unwashed curly hair + gel stick on electrode things are a bad dream. Curly hair + left over gel stick on electrode residue + a waterless shampoo shower cap thing “washed” by a nurse assistant is a NIGHTMARE. Painful tangles for days! I looked a hot mess; not that looks should matter at this point but not being a poor impression of Medusa sure does help on the self-esteem front.
Josh had to return to work that night, The Bestie stayed and we played card games until the night nurse got on to us for laughing. Apparently, no fun in the hospital is another thing I wasn’t aware of. I just can’t sit there quietly feeling sorry for myself or yell grumpily and demanding down the hall like my hall mate did “HELLLLO!” “HELOOOOO!!” ugghhh that guy and his family were awful. That night my nurse came in and told me I was on the schedule for more MRIs. We didn’t know if it was right then, and hour from then, or the next day. Having to tell Josh through text b/c he couldn’t answer his phone was sucky – he thought the worst.
The 3am vampires and the heparin jabbings of 7-9 continues, also have added day 1 of 5 of a hour long IV drip of metallic tasting steroids... yum
The results from the MRIs on Tuesday are shown to me. The lead neurofound a lesion on the left side of my brain next to the wall of the brain stem. The inflammation is pushing on my optic nerve and is destroying the myelin in that area. This is the root cause all the issues since my first symptom of my glittery light show in my eye. This bright white spot on the MRI is the reason for MRI: Round 2; he is looking for lesions down my entire spine. **HE NEVER SAID IT WAS MS** He scheduled me for a spinal tap the next day too – either bedside and they “guess” or I could op to spend more for a robot to help in Radiation for precision. I will let my insurance pay a bit more for that precision thank you; what’s another few thousand when it comes to either a human guessing or robot precision while working INSIDE my spine!
I had a bedside visit from a funny little guy with a machine that could “see” what I was seeing through more electrodes with more gel and a pair of cone-shaped goggles. It was actually really cool! In the goggles my right eye could see 9 red dots in a cube shape. My left eye was supposed to see that too but instead it failed and saw a big red out of focus blob. That’s exactly what it captured too. My other bestie and her family came to see me, they walked in in the middle of the test and got yelled at by the little guy for entering the room. OOPS! Thank goodness she brought me a good hairbrush and real hair care products; the dude was much more generous with the sticky gel dots. Oi! The doctor doing my spinal tap came to talk to me about the process. She recommended not eating after midnight but I could drink as much as I wanted; I needed to be hydrated.
At shift change the nurses brief each other on their patient. This is when I heard my diagnosis for the first time. The day nurse told the night nurse “Today she was diagnosed with Multiple Sclerosis.” I don’t think they knew that we hadn’t been told. Thank God Josh was able to stay that night. There were a lot of tears. Getting the news of the MRI, having the news of the diagnosis talked about in front of me but not to me, scheduling for them to stick a needle in my spine, it was a lot.
3 am vampires - I woke up to a row of vials being lined up down my leg. I asked the woman how many she was doing. She said I didn’t want to know. She was by my side for a long time; when she was done, she told me she filled 14 vials. I was wide awake and thirsty, next to me was a Gatorade, so I went to drink it. At that moment, the night nurse’s aid came in for vitals. He was furious that I had a drink in my hand.
“WHERE DID YOU GET THAT? YOU CAN’T HAVE THAT” He yelled.
“From dinner and the doctor said I can have it, as much as I want” I backtalked.
This woke Josh up – he was not happy I was being yelled at.
- Josh is the most non-confrontational person on the planet. Josh got confrontational... ohhhh dear.
I just had 14 vials of blood stolen from me, was a nervous wreck, on massiveamount of steroids, and this guy is over here yelling at me over something that he is 100% wrong about – someone is in trouble.
After breakfast of coffee, an hour of IV steroids, and heparin shot #10, I get prepped for my spinal tap. Of all the things and news that I’ve had thrown at me in the last 4 days, I was scared to death of the lumbar puncture. I’m not a fan of needles, I can deal with them but not a fan. The thought of them using one between my vertebrae was terrifying. I cried, a lot.
Have y’all ever ridden down an elevator flat on your back? It's a very interesting feeling. Once down on the radiation wing it was just a couple of minutes wait before we got started. I had a nurse and the doctor in the room with me under a large robotic arm and a light shooting an “X” on the table. They talked to me about the dogs while they lined my back up under the X. A pinch and a thousand bee stings later and my lower back was numb. Just typing about it makes me wince. A couple of minutes later and we were all done. The doctor said that it was the fastest LP she had done in a while and that she is happy I chose to go the robotic route because it’s so much easier.
Have y’all ever ridden up on an elevator flat on your back – it's also a very interesting feeling. As I was returned to my room, I was greeted by the last 3am Vampire still on DAY SHIFT! WHAT!! Aren’t they supposed to sleep during the day?? She needed 2 more vials of blood from me – I had no fluids left in me. Sigh...
Thursday proceeded on with me flat on back for hours to avoid the headache that can follow a lumbar puncture. I had more visitors and ended the day with dinner with friends and family bedside, and of course the jabbing of shots 11 & 12. Josh returned to work so it was just The Bestie and I hanging solo again. At shift change I got locked in and motion alarm set on my bed by my night nurse, Momma B, because she said she had heard that I was “rowdy”. Honestly, she wasn’t wrong. The Bestie and I were watching Monty Python’s “Ministry of Silly Walks”, we laughed so hard we were crying happy tears. Momma B came in at midnight for “lights out”, but instead we introduced her to the skit. It was relevant to the situation and it was the way I was walking.
Seriously more 3am Blood Suckers. What are these people testing for??? Stabby jabs 13-15. Throughout the day there was a lot talking with the neuro team about the next steps and scheduling with the MS Center of Atlanta. I had my next round of steroids and PT WITHOUT the cane instead Josh was there in case I needed an arm for support. It wasn’t pretty but I was walking on my own and doing a few stairs too.
SEE YOU LATER (or not) BLOOD SUCKERS! I’M OUTTA HERE! I finished my last hour long round of steroids in 30 minutes – blew a vein and the nurse called it good enough- I'm ok with that! Josh and The Bestie gathered our stuff, he went down and bought the nurses a bouquet for their station. I hand wrote a thank you note attempting to list everyone who worked with me over the week by name.
Fast forward a year later.
Today, March 26, I have changed the way I function in everyday life. I try to get through each day “normally” but still have symptoms daily Some days are awesome, some days are not so great. That glittery light show is still there – I shoot through it every single session. I’ve tried the drugs available for MS and have decided to go about kicking its ass through a strict diet protocol and exercise instead. That list of symptoms for MS at the very beginning had a whole new set a mile long to go with them with the drugs. I’ve picked up playing tennis after not being on the court for years! Tonight, I have my first match! YES! I am not only walking on my own again but running around a tennis court playing doubles tennis. I’ve changed the way I run my studio - I schedule appointments Monday-Thursday and only aim for 8-10 portrait studies per month (if you want me book early!). I travel to speak to other photographers at conferences and teach workshops. I try to blog several times a week; it helps with the cognitive function and brain fog. Overall, I’m feeling a new normal and staying positive. Positive out, positive in!