Crap Gap…

WRITTEN 9/3/22

Dont You Know Everything Quotes. QuotesGram

I guess I’m officially in the “💩Crap Gap💩”. The time period closest to the next infusion where symptoms may increase and worsen.

I am still 4 weeks away from my next Ocrevus infusion (September 29). It seems like the time can’t go by fast enough. I am hoping that this next round will heal my problems so I can continue to conquer the mountains that are in my way but at this moment it seems so far from my reach. It will be my first full dose and it will be interesting to see how my body does as we try to increase the speed at which the medication is administered. The first 2 doses I had to take at a slower pace. 

A couple of weeks ago, I was introduced to a new group of ladies that have MS. These ladies helped spark a fire under my gloomy and negative attitude. They reminded me that less is more and that everything I am struggling with is part of the journey. It’s whether or not I go with the flow or challenge it. Social media has its way of making life look so perfect no matter what is going on. I am going to be truthful and be vulnerable. I don’t like to edit photos and sometimes seeing things in the real light can bring relief to the emotions that are present. 

This is one of the hardest blogs I have had to write since the start of this journey. I have been debating on if I should share the newest struggles with my MS. I don’t write the blog posts to get sympathy. These blog posts are my way of sharing information (educate) and maybe even help others with their journey. Sometimes it can be tough talking about your problems especially if you have to repeat it to so many people. I have been fed up with this new challenge not only because my body aches, but it has been a lot to deal with mentally, physically and emotionally.  

How would I be the Inevitable MS Defyer if I wasn’t open and truthful? There is no sugar coating how my MS affects me. I’m learning to accept my limitations even though I am being stubborn about it.

So here it goes… 

The best alarm clock comes running into the room early in the morning to say, “Good Morning Momma!”. I slowly roll to my side, place my feet on the ground and start to move my toes to get an idea of what kind of sensations I will be dealing with for the day. Can I feel the floor? How do my legs and body feel? What is my overall state of mind? Then I use my strength to rise upon my legs and take my first step of the day. That step is my indicator for what the day may bring. Some days I can just get up and start the day with a hop and a skip. Other days my legs feel like jelly. The sensation of weakness and not having the strength to walk or stand can be tricky to the mind. Yet, I stop, take a deep breath, tell myself I can do this and slowly walk around. Most of the time it feels like a sugar low that is quickly resolved by eating. I prefer to walk around barefoot as much as possible so I can feel the ground. I know it sounds crazy but the sensations in my feet aren’t always there due to nerve damage so I get excited to know that I can feel the cold floors.

That’s not it…

Grab a bowl and fill it with cold water. Also add some ice and let it chill. Then place your hand in the ice water for a bit. What do you notice? If you remain in the cold water for a certain amount of time your muscles start to contract and stiffen. Well imagine every time you placed your right foot completely on the floor your muscles spasms (contracts) from your toes up to your hip. I literally can feel it start at my toes and build its muscle contraction up to my hip. With each lift of the foot to placement on the floor you're in full muscle contraction. Sometimes a Charlie horse can be added to that little walking combo which make it even more eventful. I feel like a robot dancing as I work through each movement motion. I could be a part of the pop and lock dance crew. Sometimes I even add a little shake like a dog would do to remove anything that is on their fur. The intensity of each spasm is different depending on day and time. I can be walking find for part of the day and within a second it can change.

When I finally lie down to rest my foot starts to shake which leads to the entire legs shaking, rattling and rolling. You would think that I was sitting on a vibrator or trekking through some rough terrain in a truck with how much it makes my entire body move. Or I am really good at tapping my foot and keeping rhythm but at my own tempo. You can say that I dance to the beat of my own foot. It can be very annoying and every time it happens, I think of Thumper from the Disney movie Bambi. You can just call me Thumper.

Here are a few videos to show you what I am talking about...

There it is...I'm struggling more than I admit. It is something that I can no longer hide behind my own quiet and drama free home doors. My anxiety shoots through the roof when I’m in public because I feel like I am not me anymore. I see myself as so much more (abilities, what I am capable of etc.) and when other individuals see my physical struggles I just crumble like a cookie and my gut just sinks. My last scans did show new lesions but none of them are active. That being said even though my lesions are not active I have a few new symptoms. 

Just when all of my emotions began to show through my wall of steel, I put up when around others I was presented with comfort by my husband and an email from a MS program.  I am reminded that it is normal to compare ourselves to the person we once were, or to the person we thought we would be. We literally define ourselves by our roles, and accomplishments, instead of who we really are as an individual. These past 4 almost 5 years I have walked through discouragement, fear, frustration, and pain. regardless of what I am going through right now, I am encouraged to take a moment to REMEMBER WHO I AM. 

"I am greater than MS… always have been, always will be."

We have been working hard to keep track of symptoms so maybe we can find what triggers them and make a lifestyle change to better my quality of life. Every day is different as to when my symptoms are at its peak. After talking to my husband and family I decided to order myself a cane for safety especially since I spend the day with my toddler. I still push through and a part of me denies that I have one, so I use it very rarely. I guess that is my stubbornness. I am working on incorporating more healthy eating habits, yoga, meditation, using my row machine for at least 10 minutes a day and staying positive to the best of my ability. Sometimes making jokes during a bad day of symptoms lightens the negativity. 

When you are dealt a hand of cards you never know what the outcome will be until you start to play the game. Like the quote at the beginning of this blog says, “Grab the steering wheel and force yourself to pay attention to where you are going.” I may be hitting the curb every turn I take but I am learning how to avoid those bumps and find the possibilities based on the current situation. The immune system has a funny way of playing games and this time it is really getting on my nerves. I am working towards writing MY VICTORY story and I am the Inevitable MS Defyer. I have what I need to be the best that I can be, and I will make my journey worth the dance. No matter how many times I have to do-si-do with MS. 

Every day is a BLESSING!

I chose to NOT GIVE UP!

I AM ME!

I will continue to GROW!

I am STRONG!

I can LIVE my DREAMS!

#RENITASTRONG

I am the INEVITABLE MS DEFYER

WATCH ME!!!