My secret disease…

I’m going on my 8th summer of having MS and live in one of the hottest cities of the US because 8 months out of the year is glorious! The summers are freaking brutal.

I don’t tell a lot of people I have MS, I don’t want pity, I don’t want the worry that I’m not performing up to standards of others. I don’t want the second guessing of my abilities at work and really I’m just scared I won’t be looked at as who I’ve been in the past to some people. I do want to be understood though but still keep the knowledge of my disease to the ones who matter most to me.

I’m independent and don’t need help but appreciate it so much when it’s offered. I’m lucky to have a partner that understands mostly of what is happening.

I wish people knew about my invisible symptoms that you don’t have to see to believe…

When I say it’s too hot, I can’t be outside for too long, it means it’s too hot for me and I need to be mindful of my time outdoors.

I can walk fine and then all of a sudden trip on a flat surface.

I can go to 5 different stores in one day with no problems and then the next day I can’t even move off the couch from fatigue.

I try to work out at least 5 days a week and some days I rock while others I’m just getting through a workout.

I have numbness and tingling at times in my hands, throbbing in my left knee and it feels like a vise grip is tighten around my knee.

I try to drink enough liquids but not too much as somedays, really everyday, I have to use the restroom hourly, sometimes twice an hour. If you see my rushing to the restroom, please don’t make fun of my “small bladder” or tell me you need to get that checked out. I know what’s wrong with me and don’t need you to advise me of how to take care of me.

I still want to be invited to places even if sometimes I have to cancel at the last minute because I know I won’t be of any joy to you or have fun myself.

The headaches are intense and suck all the life out of you.

I have vision problems if I stare at a computer or phone too long and need to take breaks often.

I am a frigging Warrior!

#MyInvisibleMS

#WorldMSDay

The Elephant in the room..

Let me start off by saying, I feel terribly sad for the families that lost a loved one and the sweet souls that will have to live with this night of terror their whole lives.

I’m not a gun owner nor do I ever want a gun in my home. I’ve lost my father and many people who have taken their own lives with a gun. I do not care if you own a gun or don’t own one. If you are trained and know how to handle a gun that is a bonus. If you don’t know anything about them and own a gun, please take some classes at your local gun range. It’s not just for safety but for others around you as well.

Thoughts and Prayers are all well intended but these will not bring back loved ones lost or bring the terrified injured ones any relief.

Policy and Change is what people have been saying we need.

How do we enact changes? Do we call our state representatives? Do we start a petition? Do we donate to the many groups striving for gun law change? I’m truly not sure anymore because it doesn’t seem that our law makers care one bit since this the the 307 mass shooting of the year..

We need more detailed background checks, passing gun safety classes when applying for gun ownership, be more vigilant on re-checking approved applicants, this process should be like when you have to renew your drivers license. You can’t drive a car without passing a test to obtain a license. It may be bothersome for some but if individuals want a gun then checks and balances should be in place in order to have one.

Also, we need to treat our veterans better as if these people have these issues, which are in no means a valid excuse, then we as a society need to find them the help they need.

We say check in with your friends to make sure they are doing okay with handling the traumas that are arising or just daily life may be getting them down. Our veterans need welfare checks too but our government doesn’t seem to know how to handle their care.

I don’t know how to watch the news and not cry every night when it’s always terrible nor do I have the answers to fix these issues. I don’t want to continue to see these stories and one it’s just numbness felt.

I do know this cannot become our normal. We need to break the pattern. I vow to do more research on how to make a change and hope you’ll join me in doing so.

Life after loss..

It’s been a little over two weeks since my Aunt passed away and I still don’t have the right words.

She was in the hospital for a good two weeks after having a major stroke, she had swelling of her brain that had started to release on its own, she was transferred from a private room back to ICU because she developed pneumonia. She wasn’t able to eat or drink on her own. She didn’t want a breathing or feeding tube.

I’ve had a sympathy card sitting on my table since the day after she passed to send to her husband, my sweet Uncle, but I just don’t know what else to say or really how to convey my words for his loss and mine as well.

We were not super close, we would send Christmas and birthday cards each year. This past July she had sent me photos of my father when he was younger, he passed away almost 28 years ago, and it included a picture of all of them during a holiday that made me miss my dad and being closer to his side of the family. Now a huge piece of that is gone and I’ll never know her stories first hand. I think that’s the most sad part to me. I didn’t take more time to really know her, ask her about her childhood, or adulthood times with my daddy.

I feel sadness for the loss but I haven’t cried. I don’t know why. Maybe it’s because we just kept on going on with life. It keeps moving forward with out our lost loved one. We don’t truly take the time to crack open our hearts to allow the sadness to ebb in while sitting in our grief and let all of the happiness for times we will always remember in as well to say our goodbyes.

To all that have lost a love one recently or even a long time ago, I hope you sit with your pain and happiness feelings with love and gratitude to have had them in your lives if only for a short while.

Tonight, I vow to myself to take the time to feel this pain and write out the card even if it is to say I’m at a loss for words but I’m sending you so much love.

Auntie, until we meet again. I love you so, hope you are dancing and singing with your Momma and my Papa.