Happy Halloween 🎃

I’ve had several DMT changes because I had some very scary allergic reactions while on my injections! On 9/20/18 my neurologist stopped my Extavia treatment and prescribed Rituximab! Naturally, I was very nervous once he went over all the possible side effects. One being PML, which just thinking about, gave me the heebie jeebies!

I had my first infusion on 10/17/18… I was miserable for 1 1/2 weeks. I had vision changes, strange pain in different spots, very heavy legs, dizziness, horrible anxiety, flushing, and crazy jaw pain! My Neurologist said he’ll check my disease course in response to the medicine, but I’m already treated for at least 6 months!

Although, I’m starting to feel better. I’m not 100% just yet. But, I have 3 sons and so the show must go on! It’s Halloween and to see them all dressed up and heading to school with the biggest smiles on their faces, is such a blessing! It means I’m here and I’m fighting! Living life with Multiple Sclerosis isn’t easy, but I’m never giving up! I have 3 ninjas (their costume choice this year) and a loving & loyal husband, depending on me to stay strong. Plus, I owe it to myself to make every day count!

I hope all of you are well and will enjoy your Halloween 👻

Sincerely, Crystal

Bitter Sweet

I’ve been on Extavia (a shot every other day) for a little over a year now. I went to my Neurology Appointment 1/11. As always, I was extremely anxious … but this time also a little happy! My intentions were to ask all of my (written down) questions and stop my injections ! I thought just maybe, I needed to take a break. Well I know I did, mentally. It was draining and I’d gotten to the point where I would cringe every time my hubby reminded me, “it’s time for your shot”! Don’t get me wrong, it was also nice not to have the same symptoms I was experiencing daily! Especially after my right knee was buckling with every step, I was falling up & down the stairs in front of my sons (more times than I can count) and the tremors, numbness & tingling had taken over. However, my appointment definitely didn’t go as planned!

My amazing neurologist let me know:

Extavia was making my Lupus worse. Therefore, not helping my MS either!

While I got my wish, no more Extavia! I was also prescribed a new medication. This one will be taken every single day! So, as I was starting to cringe at the mere thought of taking my Extavia … as you can imagine, this news hit me like a ton of bricks!!

Although there’s been a drastic decrease in the number of MS episodes and symptoms I’ve been experiencing, the thought of more shots (every single day) gave me an uneasy feeling!

That was, until yesterday! A Nurse came to pay me a visit and start me on my Glatopa! Due to all of the possible side effects, I was apprehensive, to say the least! My shot went well, with only a red circle around the injection site and a minor pinching feeling.

Hope, Faith, and Love are what gets me through my days. I hope for so much. But especially, a cure for MS! I have faith in God, that he will continue to give me the strength I need, to get through my tough days! Love, the love my family has for me and I for them seriously keeps me going!

Have a beautiful and relaxing Sunday everyone!!

Happy New Year!

I’ve been super sick. Normally when I say that, it’s all about my MS & Lupus. Optic neuritis, fatigue, dizziness, migraines, severe muscle spasms, severe pain, painful hands, and last but not least, numbness & tingling are my most debilitating MS symptoms. This time, it’s because I caught a bug!

Even though I’m on injections every other night, it only reduces the frequency of my episodes, not stop them! I mostly rely on my faith & pray for no new lesions, each time I have an MRI. Now I’m slowly finding out how horrible a weakened immune system can be, and I’m changing my mind about being on Extavia!

Winter break with my family thus far, has been spent in pj’s, a messy bun, taking Prednisone and Azithromycin, and eating to live (which is detrimental since I’m a foodie, and I live to eat)!

In 2018, I’m aiming for more courage. I’ll always be humble, grateful and compassionate! So, a new year for me means more prayers going up for all those suffering, more time to hope for a cure for MS, more time to exude grace & strength, more reasons to practice patience and more time to love all those around me.

I say this sincerely, Happy New Year everyone!

Comparison…

I probably shouldn’t do this, ever… But, when I compare my present self to my old self (my true self) there is barely a twinkle of recognition! Optic Neuritis, tingling, numbness, falling, extreme fatigue, muscle spasms, and pain stop me in my tracks daily…thanks #MS!  Swelling from a #LupusFlare makes my shoes too tight and my fingers feel like popping. #JointPain is so consuming that I don’t remember how it feels to have “normal” knees. For Crystal with MS, planning ahead is pointless, but that’s how our 🌎 works. So, I have to find a way to be a part of it! #MS #Lupus #GoingMyOwnWay #BeingTrueToMe #FindingBalance #DeepThoughts #MSMadeMeStronger

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MSversary🧡

Today marks my one year diagnosis of RRMS. Although I’ve been living with symptoms since 2001, 6 months after having my first baby boy… nothing could’ve prepared me for that day! After years of countless episodes of Optic Neuritis, migraines, dizziness, and being light headed… I’d finally moved to the big leagues when I couldn’t feel my 3 sons perfect faces any longer or walk without my knees buckling. Numbness and tingling were at an all time high. Then the MRI (4th one btw) that changed everything, and gave me a name for it all. As if the lesions weren’t enough… I had a Spinal Tap… ummm Crystal just as we’ve suspected, you have MS 👎🏽

Needless to say, MS is life long, I’ll need to rely on my faith in God and strength, forever. This isn’t going anywhere! Through this entire experience thus far, I realize that you can’t change people. But you can be grateful for those that stand by you through every step of the way, literally! It’s not easy to live this way, in tough times, everyday. The pain doesn’t go away, I’ve just made room for It! I do it for my boys, to show them that no matter what’s thrown your way, giving up is NOT an option. I look at the bright side, if I have pain it means I’m still able to feel! And well, I simply can’t fathom the alternative!

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