My MS Diagnosis – Part 2 & Low Carb Lemon Cheesecake Jars

This may be a bit long, but its the story, so what can I say? I promise you will be happy with the yummy recipe at the end!

Can I share a secret with you?  There is something terrifying about having your first MRI scan, at least for me there was. It was then that I realized something serious was going on and I will admit that I had a little cry while strapped in to the big bad noisy machine during that maiden voyage. It was the first of many scans but the first time I felt alone with my fear of the unknown.

Now I know…..I have a definitive answer about what has been happening to me but how did I feel when I read it in black and white? “You have Multiple Sclerosis”. Hmmm, my mind was spinning, not because of the diagnosis itself,  but because of my fear of the unknown. I needed to find out more but initially, this is what went through my mind:

First, I breathed a sigh of relief.  I didn’t know what Multiple Sclerosis was, but I knew I wasn’t going to die, what a Relief that was.

I was sad and scared.  I remember In the months leading up to my diagnosis, I had hoped and actually fooled myself into thinking that I had something minor going on and a pill

or therapy of some kind would fix me so I’d be as good as new. It took me years to realize that wasn’t going to happen, and when I finally did, I was sad.  Why me and why now? Along with my pity party, came fear.  I had no clue what tomorrow might bring or what challenges would be put in my path. Would I be in a wheelchair? Would I be able to feed myself? Would I watch my kids grow up, get married, have their own kids? I was scared I would miss it all somehow.

Next there was denial.  My new journey had begun and I found myself with 2 options: Listen to my doctor’s suggestions or pretend nothing was wrong. At that moment, it was an easy decision. By the time I was finally diagnosed, I was feeling fine so ignoring it was a good and easy plan.  I had a busy, full, hectic life and a well-paying job, all of which I loved. I thought I’d be able to manage my MS easily and I believed that my lifestyle wouldn’t have any effect on my symptoms and for a little while that approach worked.

After my diagnosis, the days came and went, things were going along well – I was under the care of a Neurologist at the MS Clinic and my own family doctor. And then…..bam! 6 months into my diagnosis I woke up and had an issue with my eyesight.  I had blurry vision which turned into full blown double vision by lunch time. Along with the double vision came nausea, dizziness and as you can imagine, I couldn’t even find my way to the bathroom without a guide dog (or someone helping me). After a day of this, I realized it wasn’t getting better and I started to get scared that this would be my new normal, that’s a terrifying feeling.  My family surrounded me with love and support, but they were scared as well. So, I made an appointment with my family doctor who sent me to my eye doctor, who consulted with the Neurologist, who determined that it was Diplopia, which is a common issue for those with MS.  She ordered a massive round of steroids to try to stop the inflammation and hopefully shorten the relapse time. All in all, I spent over a month like that before my eyesight came back fully.  It was not fun and I don’t recommend doing it. I now know most people with MS have eye issues at some point in time, I’m just lucky my vision returned. I still have the occasional double vision episode to this day, but it doesn’t stick around for too long and I don’t need steroids to stop it.  I realize that is one way my body says “slow it down lady, you need some rest”.

2 short months later, I lost use of my right arm.  It didn’t happen suddenly, it just kind of crept up on me, starting with a strange sensation in my hand, then a heavy arm, moving to clumsiness, and within a week, I had no use of it. I couldn’t write, I couldn’t hold a fork, I couldn’t do up my pants, but I was foolish and tried to work through it anyway. I  wore stretchy pants, typed with my left hand and had to have other people write for me and it was extremely frustrating. Again, I needed steroids to stop the attack.  Steroids suck. When I relapse, I take 25 steroid pills every morning for 3 days. If you have had that high of a dose, you know that it messes with your mind and your body. To say that they make me bitchy is an understatement.  I couldn’t sleep, I was agitated, I couldn’t eat. Steroids suck, there is no other way to describe it, but they have been a necessary evil to shorten my relapses because, ain’t nobody got time for that!

Since the first day I met with my new buddy (my Neurologist), she urged me to go on a DMD (disease modifying drug), but I was stubborn and resisted.  She knew I wanted to continue working so she helped band aid me the best she could so I could continue doing the things I wasn’t ready to give up yet.  I really thought I could handle this on my own, but after this second difficult relapse, I realized that I needed some help to battle this disease. So, I grudgingly agreed to start on an injectable medication 3 times a week.  It worked fine for me, but I ended up with some major injection site problems and had to quit after a year. I tried another injectable medication that went into the muscle but that medication messed with my mind IMMEDIATELY.  I felt like I was on a roller coaster going a thousand miles an hour and I couldn’t get off it, it was horrible, so again I quit!  Finally I landed on my current medication.  I have been on a monthly infusion of Tysabri for over 8 years now and it has been a godsend. My ultimate goal is to be able to come off all medications in the future. I’ll tell you this, when you feel completely exhausted (the fatigue I experience is more than just needing a nap, I need to hibernate, it is like its a huge effort just to lift my head up) and you have unexplained pain throughout your entire body it’s incredibly wearing both physically and mentally, so I take medication to relieve some of the symptoms (muscle spasticity, nerve pain, sleeping issues, brain fog, balance problems, vertigo and pain), but they are not always successful.  In addition, I am experimenting with alternative therapies (cannabis, massage, essential oils, meditation, diet, exercise, physiotherapy, etc) and found all of these make a big difference in my mobility, my mind set and my pain. I am a work in progress.

Next there was acceptance (kind of) – This took me a very long time to come to and I will admit, sometimes I still don’t accept it wholeheartedly, but I am closer to acceptance now than I have ever been.

Finally, I am redefining my life – although that has taken a little longer and it is a constant revolving door, I  am working at it daily.  I am more intentional in what I do, I try to look for the positives. . . the things that I can do and manage, rather than dwelling on the things I can’t do or things that have been taken from me. I am learning to not use all my energy for a single task, unless that is my only task for the day.  Each morning I have a battery that is only 1/2 charged and if I expend more energy than battery life, I end up exhausted and unable to function until I can recharge. I’ve had to find the inner determination that I’ll keep fighting, I will not let myself become this illness if I can help it.  Multiple Sclerosis doesn’t define me and is NOT my identity.

What now? We have gotten used to taking life at a somewhat slower pace, We have accepted that I will never get back to my pre-MS self, but then again doesn’t that happen to everyone as we age?  I know that I need to lessen my expectations in that regard. I recognise that there is no way of telling how quick or severe the progression will be so I will continue to pull out all the ammo I have to fight it. We know that it is possible that I will be a wheelchair user at some point; however long or short that may be and we will tackle that if need be, but I certainly don’t dwell on it.  That being said, I’d be lying if I said it’s been easy, because MS changed my life in many ways. It’s sometimes called an invisible illness, and for me this has been true. I’ve had to leave parties early, cancel plans or not go out at all and then I had to learn to be ok with that, cut myself some slack.

So, no, I’m not giving in. Having MS is not within my power, but what is within my power is living a full life within the abilities I have, that is my daily intention.

My other intention is to change my eating habits.  How do you do that without feeling like you are starving yourself or missing out on the good stuff?  I will tell you how.  I turn to my old faithful friend, Pinterest. Why?  Because Pinterest never lets me down.  I can call on her whenever I am feeling down, uninspired, crafty, happy or sad.  Day or night, I can always count on Pinterest to help me out. It was through Pinterest that I found the Wicked Spatula.  The mastermind behind the Wicked Spatula is Lauren – Her cooking style is 80% paleo but always gluten free, simple, and mostly organic.  None of the ingredients she uses has artificial flavors, colors, fats or sweeteners, no high fructose corn syrup and no preservatives. Just good for you stuff! Lauren believes that healthy nutritious food doesn’t have to be boring, tasteless, and time consuming! She feels food should be fun, she loves Reggae Music AND she can’t lie, what’s not to love about her?  Be sure to check out Lauren at http://www.wickedspatula.com  – I know you will love her  recipes as much as I do!

Until next time!

Raegan