I haven’t done an MS-focused post in a while. I’ve been doing lots of things to treat my sidekick and posting tidbits here and there on social media but haven’t taken the time to do anything specific for the blog.
After finding out I was the target of some internet trolls I feel the need to remind everyone that this is my personal journey so I’ve added a disclaimer at the bottom of this blog. I am documenting it on the blog so I can track my progress first and foremost. Secondly, I do want to be of assistance to help anyone newly diagnosed (or even someone who’s been living with MS for years and is seeking new answers) so that they can potentially navigate living with MS in a way that speaks to them. I also want to hopefully inspire those around me to be proactive with their health so that they never have to deal with living with a disease. I am self-educating myself as I go. I am by no means an expert or exclaim that I am but I have a pretty great brain that has been trained by curious parents and a higher education that allows me to do the research and then bring my findings to a large health care team that are all playing a part in my care. The internet attack was very much directed at how I’ve chosen to live with MS. I was a bit shocked that my personal choices, which really only affect me, could be so polarizing.
I am still treating myself holistically. I chose not to go on a disease-modifying drugs. My choice was PERSONAL because the efficacy percentages of the drug are low and the side effects can be many and diminish MY quality of life. That is not to say that I don’t believe they work. One of my friends was diagnosed within the same month as me and she is on Tecfidera and it’s working for her. My choice to not go on the drug was rooted in the belief that if I treat myself naturally AND with drugs, I won’t know what’s working. I chose to become my own science experiment so I can see if I can live without attacks by natural treatments first. My decision was always that if my disease progressed I would re-evaluate my choice at the time. So dear internet trolls don’t get your knickers all in a knot because I made a personal choice for my OWN health care because it’s working and I know I made the best decision for me. Do you and I’ll do me and we’ll all be a happy internet family (or not).
At the 7-month mark, I had two MRIs that gave me beyond good news and affirmed my health care choices. I have been able to live a healthy, full and active life while reducing inflammation in my body. I’ve allowed my body to thrive. I have no new lesions which means my T cells aren’t confused and eating away at my myelin sheath. I should’ve celebrated this news way more than I did.
So how am I doing now…
I’m tired. I’m happy. I’m drained some days. I’m constantly managing my stress and self-care. I’m constantly researching and I feel alone and surrounded by love all at once. Here are different aspects that are working for me or I’m working on…
Supplements: I take a lot of supplements every day. This is my medicine and it can get daunting to take everything. I’ve broken them out into twice daily “feedings” so I don’t get overwhelmed, I use the app MediSafe to remind me at 11 am and 9 pm and it helps with compliance of taking them every day. At the end of July, I shared my most recent bloodwork and current supplementation plan. I know I’m doing something right as my bloodwork shows optimized levels of vitamins and minerals. It can be exhausting taking these every day and sometimes I miss some. When I flip the positive switch to view them as things that keep my body as its healthiest self vs. “ugh I have to take my pills again” I remember to take them, it happens effortlessly and I’m healthier for it.
Cortisol/Stress: One of the things that my bloodwork did show was that my Cortisol stress hormone is elevated. It’s hard to tell exactly why it’s elevated as cortisol is tied to both your mental and physical stress. So this could be a combination of my workload, all the things I do for my second career as a fitness personality or the races I’m putting my body through. I added in the supplement Relora-Plex after consulting my Naturopath to see if that will help as I tackle my last 2 races of the year in Sept & Oct. I also found a new Acupuncture practitioner. I’m seeing her to continue to work on my digestion issues (another blog post entirely) but she is also helping me by using stress points as well during my treatments. I’ll hopefully do a full blog post on how this is helping after I’ve seen her for longer than a month.
Reducing My Toxic Load: I finished reading The Auto-Immune Solution by Dr. Amy Myers (I still need to do a book review post). She has a great chapter on reducing your toxic load. The way that I easily understand it is that if toxins in my body were one of the factors that caused my T cells to become confused and eat my myelin sheath then if I reduce the toxic load on my body it won’t be a factor to confuse my cells and my body will function at optimal immune fighting levels.
I have started seriously looking at my water consumption. I went to Chalk Lake to source fresh spring water. I’ve also replaced my Brita filter with a Santevia water filter. This water system is best for giving me alkaline water with a balanced PH. My next step is to research reverse osmosis water systems to install in my condo so that I can also remove fluoride from the water I’m consuming at home. There is so much science behind all these things so if this sparks your curiosity I urge you to look into it for yourself.
I have a ton of natural beauty products but I haven’t overhauled everything as it’s an expensive process. I’m slowly transitioning all products with the dirty dozen off my shelves. I’ve found an amazing store in Ottawa called Terra20 so when I’m home at Thanksgiving I have a shopping list to get all my products hippie approved.
Mental Health: The MS Society of Canada was hosting the #chatMS Twitter Chat this week which happens every Monday night at 7pm EST. One of the questions was how does MS impact our relationships. 140 characters was not enough to answer this! My family and friends have been incredibly supportive but it’s hard.
I definitely feel alone (the tears started flowing as I wrote this). I am clearly keeping these thoughts bottled up inside. This is my battle and my sidekick and I definitely feel like it’s mine alone to battle. I am an incredibly positive person and my friends expect that from me. I’ve noticed over the months as the year has gone by that if I’m having a bad day they don’t know what to do. I’m always shining out such love and brightness that I can immediately sense people shying away from me when I’m not ok. That’s really hard. It has caused me to put on a really brave face all the time so that I don’t burden them with my thoughts, pain or frustrations. I can see it, especially at Alpha Obstacle Training. If I show up happy and smiling people gravitate to me. On days when my symptoms come on from overheating and I get frustrated I usually end up going to sit on my own facing away from everyone because I don’t want them to see me upset. No one usually comes over to check on me except the boyfriend. He’s done an amazing job of knowing how to calm the tears but I know it weirds him out when I get emotional over being frustrated. Lately, when I voice concerns about how my body is handling everything the usual response is “You’re fine, You’re Robyn. You’ll Rock it”. Sometimes I just want someone to hold my hand and tell me it’s ok. I have all these fears: Will someone ever want to marry me and have children now that I have a disease? Will I grow old alone? Do I need to save enough money to ensure I’m cared for if I ever have to be in a wheelchair? So you can see how the thoughts can get a little runaway. But then I deep breathe and come back to the present and stay away from the future thinking anxious thoughts.
I’m suzy sunshine but there are a lot of fears up in this head that I battle daily. I’ve been telling myself it’s ok for 10 months now and I know I need to be my biggest supporter because at the end of the day…. This is my journey, my battle, my life. No one can live it for me or support me through it. I have to be my own strength. It just gets lonely at times.
Ok but back to a positive note. I’m doing really really well! I’m so happy with where my life is 10 months in. It’s a happy and healthy and balanced life. It’s not always perfect. I’m not always perfectly positive. But at the end of the day, I’m doing really well and I’m blessed. I’m fighting fears, an auto-immune disease and living my best life possible. I lay my head down every night grateful, thankful and ready to be well rested.
Disclaimer: I share my MS journey to help inform others of what is possible in this world. Please work with your physician or health care team to educate yourself and before implementing any new treatments.