“In my last year of high school, I was hitting the tanning beds routinely, as it was 2002 and I had to have a ‘Britney tan’ for my graduation boat cruise. One night when leaving the salon and driving to pick up a friend, I remember seeing double when looking at the other vehicles on the road. As a typical 16-year-old would, I thought I had contracted some weird eye disease from not wearing my tanning goggles in the beds. I waited a day or two and when I noticed my walking was wobbly and legs were ‘asleep’ all day long, I decided it was time to tell Mom and Dad. We got in to see my family GP fairly quickly and after confirming with another doctor in the office, I needed a higher level of opinion. I had a CT scan, an MRI, and then a spinal tap in the ER. I remember the doctor laughing and saying I could have left my underwear on under the robe. My low rise jeans were so low, I couldn’t have possibly worn underwear. Everyone would see them when I bent over! I tried to explain the situation and the fact I wasn’t wearing underwear, to begin with. He looked at me oddly while the nurse giggled with me.
In the end, the spinal tap showed a definitive diagnosis. It was Multiple Sclerosis. The kindest pediatric neurologist told my mom and I in his office. My dad still regrets not being there until this day. The doctor said I could go on to live for many years without even having a single symptom. I remember being quite stunned and breaking down into my mom’s arms across the street asking, ‘I’m not going to die from this so it’s not a big deal? I can still carry on and marry Nick Carter of the Backstreet Boys and all my dreams will come true? No wheelchair needed, right?’ Wrong, how young and naive I truly was.
A few years passed without any signs of relapses but by 2010, an interesting theory was announced. An Italian doctor had found ‘hope’ for MS’ers all over the globe. He believed there is a narrowing in the jugular veins, restricting blood flow from the brain. My girlfriends knew how important a cure was and threw a huge fundraiser at a restaurant in Vancouver. We raised enough money for me to travel to California and have a Venoplasty of my jugular veins and fingers crossed, I would have a better chance at an MS-free life.
I had a bit more feeling in my feet and the swelling in my legs went down but unfortunately, it was temporary. I went back to the way I was about 6 months later. I was now walking with a cane as the foot drop in my right leg was causing a few too many falls. In the next few years, I tried many treatments to try to halt the progression of the disease. I started injecting myself with an interferon weekly. I quickly developed a fear of self-injecting and a panic disorder. I remember being out partying with friends but having to have my roommate (best friend) inject my leg before going out. These were also the fun nights I remember partying like a rockstar because I did not know what the future held. We would skip down Granville Street because skipping was easier on the legs and worked magically instead of running. The aches and chills would be under control as long as I took my Ibuprofen religiously post-injection. I would cling to any nasty pole in the bar and dance on it like a sexy stripper who actually needed the slimy thing to help me balance.
I started dating my husband and he quickly became my rock and lifeline. He would give me daily injections of another interferon in different spots on my body. Super sexy, haha, NOT! Eventually, I had come to the realization these treatments were causing more pain and grief than anything beneficial so I stopped. In 2014, Dan and I got married and I became a stepmom to two children. I had been a part of their lives since they were little so it was safe to say they were used to having me around. I have always loved children, especially babies, and could not wait for the right time to expand our family. But my mobility was getting worse and that dream was becoming harder to imagine.
I was able to keep working full time until 2010. I had a wonderful job with great coworkers and a great salary but unfortunately had to go off on disability as the relapses were becoming constant and the work stress was making my disease progress too rapidly. I went off for about 6 months and felt awkward staying home and felt I was strong enough to handle a ‘less stressful’ job at another company that was closer to home. What a mistake that was! My health continued to decline and now I had completely lost any longterm disability benefits. Money isn’t everything. My health had to take priority, I had to retire at 27 years old. For the last few years, I have been volunteering for the BC Guide Dogs and loving my time spent in the office with their staff.
Years ago, Dan found a new fundraising opportunity, the MS Golf Tournament for the MS Society of Canada. It’s amazing for him to get out with our friends and spend the day raising money for something he is so passionate about. The dinner afterward is always a treat to see all these wonderful people coming out to root us on. The money our friends and family have donated over the years is unreal and we are truly so thankful and blown away. I did get out golfing many years ago but wearing the cute outfits was more my thing. I used to be a rep baseball player and played ringette for 12 years. I loved skating. In fact, when we got back from having the CCSVI treatment, I wanted to skate so bad I put on some skates and actually got the ice with Dan and the kids. That was a mistake and I got off quickly. Perhaps a little overzealous!
We love our annual California vacations. They used to be really carefree, alcohol by the poolside, and soaking in the rays. I have Uhtoff’s Phenomenon, which is basically heat sensitivity. My legs stopped working after hot tubs and my sight would go after bathing for hours in the sun. Our relaxing vacations soon became more of a ‘work trip’ for Dan, although he denies it and insists it’s as fun and relaxing as it’s always been. It was actually on vacation when I felt comfortable introducing the wheelchair. I didn’t know anyone and didn’t care if people stared. Plus, I could go shopping again for hours and I felt like ‘normal Alanna.’
2015 was a rough year. I was told by my doctors I could no longer drive. I was not willing to accept that and trained for 5 months to use hand controls and have them installed in my vehicle. I eventually got Sasha, a beautiful pink scooter, and loved it. I was now able to get around safely and my independence was back. I was able to go on walks with our puppy (my nurse) and the kids’ friends thought I was pretty cool with my sweet ride. Not sure if they knew it was a mobility scooter or not but I wasn’t going to say anything. Sasha got a lot of attention. Unfortunately, I got a few negative comments as well. I finally had the courage to take a scooter out and was feeling confident and great. A drunk tourist yelled, ‘Wow, now that’s lazy’ to me, in front of the kids. I was mortified and immediately began to cry. I believe I have thicker skin now and if times were different, I wish I would have walked up to that gentlemen and calmly explained the situation so he could feel like an idiot.
Later that trip, I was with my stepdaughter and a small boy asked his father what my scooter was. The dad rudely said, ‘Well son, that’s what rich people ride when they are too lazy to walk.’ I had to hold my stepdaughter back as she was furious hearing this. People can be completely ignorant! The comments over the years are now comical. I’ve been asked if I had a peg leg like a pirate. I can’t even remember the number of times people have told me yoga, exercise, Paleo diets, meditation, etc. would magically cure me. I am forever grateful for the amazing support I have had over the years. Thanks, Karen, but I don’t think your snake oil is going to cure this bad boy!
I had the most magical trip about 2 years ago with my sister. We were prepared with a wheelchair. She knew how important this trip was to me because we were going to see the Backstreet Boys and this 34-year-old teenybopper was thrilled. My sister pushed me up and down that strip in the wheelchair. We did touristy things and she did not complain or make me feel silly or ‘disabled’ in any way. Needless to say, we went to the show, got front row seating, and I had the time of my life. I think my sister was mortified but somewhere deep down enjoying this washed up 90’s boyband.
It was time to buckle down and start a new disease-modifying treatment. I was getting a little desperate. I had tried two interferon injections, naturopathic remedies, CCSVI, and countless diets. It was time for the big guns. I started Lemtrada. For 3 years, I would go into the hospital and have a week-long infusion. It was similar to chemotherapy but I got to keep my blonde hair. Dan sat by my side through each treatment. The first year was the worst and I had horrible reactions but I was ready for the third and final round. I had some personal issues go down right before starting this round. I can honestly say I am not sure how I survived that time in my life. I remember my teeth crumbling out of my mouth because of the weakened immune system and my constant grinding from stress. I cried in Dan’s arms every day and night. My little dog nurse Zoey would cuddle up with me and try to lick my tears and pain away. Strangers in the past had always warned me people would come and go from your life but I always had the same support from my circle and it was all I needed until it was gone.
On a positive note, the Lemtrada has seemed to halt the progression of my MS for the time being. I have been doing well. I don’t require my walker in the house any longer. Pre-COVID, I was able to go to an accessible gym (an amazing resource). I am building back the muscle strength in my ‘soon to be’ atrophied muscles and feeling more positive with one major goal in life: to have a baby of my own. I never thought this would be possible as I couldn’t carry Zoey (my 17 pound Cavalier King Charles dog). How could I possibly carry a baby around? Through many online friends, I have seen it can happen and I am going to try like hell to make it happen. My stepchildren are everything to me. Getting to see my stepson play hockey (his dream) is truly my favorite past time. I make it out to almost every game and love watching the passion in his eyes when he’s out there. My stepdaughter just graduated high school and will be attending university in the fall. She is so talented in so many ways I could never be and I can’t wait to see how she will change the world one day.
I could write a book about my 18-year journey. As you can see, it’s a constant battle. I won’t know how I am until the morning I wake up. It could be a bad pain day, bad vision day, or sometimes, I am a completely different person. All I can do is just keep looking forward. All things considered, I’m pretty fortunate to still be walking after 18 years. The medical advances have come so far. I remember my neurologist telling me to look forward to an oral pill ‘in my lifetime.’ That pill is now approved and working for a lot of patients. I just need to stay positive as good things are still happening. As long as there is hope, it gives me the strength I need.”
This story was submitted to Love What Matters by Alanna MacAdams from Vancouver, CA. You can follow their journey on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
Read more beautiful stories of those living positively while battling chronic illness:
‘Did yoga do this to you?’ I woke up seeing double. Things took a turn. ‘I know it’s a lot to take in.’ I was shocked.’: Young woman comes to terms with multiple sclerosis diagnosis, ‘I won’t let this hold me back’
‘After a yoga session, my spine slipped forward. I couldn’t move. I couldn’t roll over. I was a vegetable.’: Woman with Spondylolisthesis, chronic illness claims ‘pain is inevitable,’ but ‘suffering is optional’
‘I was vomiting. My doctor said it was because I was ‘promiscuous’. Others said it was from grief, after my mom hung herself.’: Woman with chronic illness says pain ‘robbed her of so much,’ but won’t rob her ‘passion for living’
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