This month, I started a NEW MS Journey. One that has been a mixed of emotions and fear. But like I always say and know to be true is that God is with me every step of the way. So I take my new journey by the horns and here we go!!
Little background for you. I started my MS journey with a treatment that was taken every week on Sundays. I would be sick from Sunday night until Tuesday morning. It worked just my body could not take the side effects. But, I did this for four years. Looking back, I don’t know how on earth I did that. I was in my early 20’s and was sick every week from treatment and the everyday ways of MS. So not fun.
Then came the time we knew we wanted to start a family. I could not “check out” from being a mommy every week and ironically was having relapses at this time as well, so my Doctor suggested changing treatments. And to change to one that I could safely become pregnant on. This treatment gave me my life back as well. It was a once a month IV infusion. Not every week, no side effects as the first treatment. It was amazing. I was blessed to have our three babies and once pregnancies were over, I was able to go right back on. Nine years I was on this treatment. The one major side effect was contracting a virus called the JC virus, which could be contacted anywhere. This virus in conjunction with treatment was a possible deadly combination of a brain infection. So you are monitored with bloodwork often to check the numbers to be negative or positive of contracting this virus. It was a risk I was willing to take to have my life back, be able to be a mommy, and keep the fight going. I knew God was directing my path with this and trusted in Him this would be okay to take. And it was for nine years. Then last March I tested positive. But good news was a low positive so I was able to extend the time of treatment out to every six weeks instead of four. This treatment kept my MS stable, something I will forever be grateful for. Fast forward to August of this year, my JC virus bloodwork showed a drastic increase in number. One that I scared me like crazy and had to stop treatment immediately. Now every headache, I have an inner panic of , “Do I have a brain infection?” Then I say to myself, ” Don’t be crazy. You are fine. You are in God’s hands. It is all fine. It HAS to be.” Now I am taking even more caution to not be around sick people, use hand sanitizer, and basically precautionary measures like the whole Corona pandemic going on around the world. I have lived like this for past nine years to avoid the JC Virus, and now had to add Covid this past year too. What on earth right? Who would of thought?
Now onto new treatment. When my Doctor and I met to discuss new plan, he started off by saying, ” So we have a few options we can discuss.” I stopped him and said, ” I will do whichever treatment that will keep me being an ABLE mommy. Whatever one that is, I am would like to do. If you think that is the best one too.” He then proceeded with, ” Okay, well this is the one I would suggest so let’s get the paperwork started.” I have always since diagnosis wanted to be as ABLE as long as I can. Do all that I can to stay ABLE. Then after becoming a mother, being an ABLE MOMMY. I am a 36 year old momma of three praying each day to be HEALTHY and ABLE living with MS. Not too much to ask right? Always something:)
My new treatment is a twice a year infusion. This one came with lots of emotions and fear. Will this work? Will I feel okay? How will this stay working in body for 6 months? Will I actually start to feel better now? Will I get a part of myself back that was lost this past year? Will I not be so fatigued all day everyday? I struggle with fatigue but find strength most days to not show my weakness, especially not in front of my babies. This kind of fatigue is like your whole body is exhausted and even if you sleep 10+ hours or take a nap, you wake up feeling no different. That itself is exhausting! I want my children to think of me as one who can handle anything and DO anything with them, so I keep going. Stopping almost makes it worse.
I also had sadness of no longer seeing my nurse who I saw every four weeks, more often than some of my family members. She became like family to me. She will never know the impact she had and continues to on me. We both cried when I told her I was not able to stay on treatment and was going on new one. This meant going to a new treatment facility. I think coffee dates with her are in our future, I sure hope!
New treatment was intense. Best way to explain it. First dose was cut in half to see how body would react to such a powerful drug. Took about four and a half hours each time. Blood pressure and temperature are monitored about every 25 minutes. Day of and about four or so days of not feeling so great, my body almost feels like it doesn’t know what to feel. Just feels like a lot of things going on and my body trying to keep up. The week after first half of dose I felt a good dose of energy so can’t wait until next week to hopefully feel the same and PRAY it stays like that until April!
Going from once a week, to once a month, to now twice a year all in 13 years of living with MS, what a ride it has been. Very grateful for each treatment keeping me stable and able. Thankful for new treatments available and continued research in this area.
I often think of how this past 13 years of living with MS has been, and what a journey. I tear up and think, “Yes, I did it! I am going to continue to do it! I have to, my family needs me and I sure need them.” And most of all I thank God for being with me through it all and continues to strengthen my faith in Him. He chose me to have this disease, so together we will make a difference. I promise Him that. And thank Him for directing my paths, whichever way that may be.
xo
