Writing this blog may be a struggle but nevertheless I am forcing myself to comply with my mission to bring raw awareness to others fighting this battle and never sugar coat anything. I received my first infusion a few days ago and today is my birthday. It’s been a struggling few days to say the least. The day after I felt like a super hero. I honestly for a second thought I dodged the bullet of the crazy aftermath of Rituxan. Literally thought to myself, “Wow this isn’t bad at all!”. Well little did I know that the side effects would creep about behind me like a crappy teenager trying to scare the living day lights out of me. It hit me hard. Drained, exhaustion, weird twitches on my left side, feeling mentally dumb and confused. It honestly feels like my whole life is moving in slow motion. I’m inching away, one shuffle at a time.
My husband and I traveled to Palm Desert to visit my parents, just him and I. We needed a quiet peaceful “child-less” weekend to recoup from the infusion. Our kids were at my Mother In laws which was amazing. I am blessed with such amazing parents and an incredible husband to whom all doted on me all weekend. It was just perfect. Healthy food because my mother doesn’t know any other food which was a huge blessing. Family videos from when I was a baby which took my family over 20 years to put on DVD’s. Wait have DVD’s even been around that long? I feel old so they must have been. Swimming in a beautiful salt water pool with our 6 month old pup Chico. Slept in like a growing teenager. It was perfection.
We stopped off at one of the deserts best Medical Marijuana Dispensaries where I got more high CBD gummies. These are the only relief I find in the evenings to combat pains and stress. It’s become a nightly regimen and although my neurologist is still against it and continues to push gabapentin on me I will stick to what works. We also found our way to the outlets where my hubby purchased another “Longchamp” purse for me as a birthday gift. I fell in love with this brand of purses after my diagnosis because they are incredibly light weight and are not as abrasive on my left side which is my “junk” side as I refer to it. I only get the “Nylon” Longchamp purses. They are the lightest in weight and really allow you to load as much as you need inside. Fantastic Quality. Thank you husband. You spoil me.
Ok let’s get to the nitty gritty of this blog. As a frequent shopper now at Longchamp the few gentleman that run the store have grown to know my face. As any frequent shopping guesses this makes us feel welcomed and warm to be recognized by store clerks. Guilty fashionista. This past weekends visit was anything but that but I keep reminding myself people are just not educated and oblivious to others and their circumstances. I had gone into the store a few times before with my walking cane and of course the store associates were sweet and concerned asking “Are you ok?” “What happened?”. I’m never shy of explaining my disease, so I had a little chat with one of them and told my story. He was so sweet and very encouraging. This time I went in making my way towards the back of the store where the Nylon purses are I was spotted by the same gentleman and out from his lips came “Hi, Oh wow, you’re still like this?”; as he looked down and pointed to my cane. I literally felt my body get hot and fumed with disappointment and rage. I never have to worry about my husband backing me up when needed but I was all over this one and beat him to the punch.
I quickly and eloquently replied “Yes, I’m still like this and Multiple Sclerosis is a forever illness. I will be like this forever and may one day be in a wheelchair, so heads up. Now that we squashed that mystery does this come in solid black?”; as I held up a long-handled nylon purse. I could not NOT say anything. Now I’m sure in his heart he’s a good person and didn’t mean any harm but it all comes down to the awareness we as warriors have to continue to bring to others. They are unaware and that’s ok. Not that I am going to school the whole world but I will certainly do my due diligence to make others aware if the situation presents itself.
It made me feel terrible though to be honest. Days later the phrase is still in my head. “You’re still like this?” Like it almost offended him to see me still walking with a cane. See, now I’m being more analytical about the abrupt and unexpected question. Raising awareness to others for people living with chronic illness isn’t always an enjoyable process. You must handle everything with delicate hands and keep everyone’s feelings in mind. But I’ve heard horror stories of MS Warriors getting yelled at in parking lots for using handicap parking when others physically “view” them as healthy fully functioning individuals. So when something like this happens and someone makes a nasty or rude comment, speak up. Let them know. Not all diseases are visible. MS is a very deceiving monster at times. But we grin and bare it and keep our heads held high.
I feel like I should open the flood gates for any reviews on this blog as I am struggling to keep my mind focused. I feel like I am on a cloud of fog brain and trying to jump back down to earth. Maybe tomorrow will be a little bit better. It’s definitely interesting noticing more and more as each day unfolds. I am becoming more communicative with my body and listening to it more daily. Knowing when I’ve reached my limits, physically, emotionally, mentally.
Today is my birthday. I am surrounded by 2 dozen red roses from my husband who loves to spoil me, gifts from friends, vegan flowerless cakes and sweet treats and most of all love. As I sit at the days end and struggle to find my next sentence, I look at my family, my kids, my husband and feel loved and blessed. MS isn’t for the weak…but when you have an army of support behind you it makes it easier to walk and trudge through each day. It truly breaks my heart for other warriors whose support system does not mirror mine. If your support system is not where you need it to be surround yourself with people who love you. Find a support group, join a meet up for people struggling with our illness, make new friends, join a new church, or participate in events for MS Warriors like us. Take one baby step day by day to better your support system and inner circle. One small change every day will lead to huge changes over the course of a few months or years even. Cut out the negative from your life because God knows we have enough. We don’t need a domino effect of MS symptoms plus being surrounded by unsupportive negativity. Everyone deserves the best and if you are not getting the best, make a small change and then tomorrow make another small change. YOU make the change. YOU call the shots of who you allow to negatively effect you. YOU create the change. YOU are beautiful. YOU are worthy and most of all YOU are LOVED.