It is no secret that I have been struggling for years with my MS and trying to get better by a healthier food plan, resources, neurologists (years of getting nowhere), aids to make my life easier, finding help at home with the simplest tasks that many people literally take for granted everyday. I feel very lucky a few of my “current tribe” peeps (you know who you are 💪❤️💪) that help me and makes things a little bit easier in my life. My life is very different now.

I truly hate the word “privilege” and for me this word is abused in such a way that it harms and hurts. Sometimes I do see good in the word, but it is not often. In this one instance, I will use this word. Life is a privilege and we do abuse it. Life can change in a second. Altered events in time, when we plan our daily life, a phone call, a gunshot, a serious health diagnosis, a death, violence, losing a job, losing health insurance, living on government income, no money, thinking we are indispensable, life and personal abuse, breakups, a pregnancy, loss of a child, loss of a family member or partner, fires, movements in cultures, discrimination, mean people, loving people, the infinite list of life reasons…

When I was diagnosed with MS at 28 years old and have met and talked to many people who have MS about their experiences, struggles, and pain from family and friends lack of support and empathy, I thought no way, the decline of my “tribe support”, my mobility and my independence would ever happen to me. Ha! Boy was I ignorant! I took advantage of my life privilege. Life does stop, things change so fast, arguments, disagreements and sometimes devastating outcomes with family, relationships, and friends. We crash and burn, sometimes so badly that it is life altering and often not reversible. I see and read how people photograph themselves, doing things like walking, running, driving, biking, cooking, having kids (I wanted 4, by the way), making a life, family and more. Then, I see people doing stuff, spewing stupid words so recklessly, blaming, pointing fingers, hurting others, deaths, senseless killings, brutality, the excessive videoing of violent acts of abuse to people and animals, bullying others, displaying self entitlement that just blows me away especially in these weird scary times and not thinking of their “life privilege”. It does comes back and bites you in the ass. Karma.

So I guess what I’m trying to say, after my day, today, October 1, 2020, I think I had an eye opening kind of day. Life is a privilege, be mindful of what your life choices, thoughts, actions are. Life does change.

My chronic disease thoughts:

Read something today from a person that was in a MS post, “we have to remember to treat getting a disease a gift, it’s the only way to not let it consume you”.

I am struggling not to let my inner demon 👹 out and not spew obscenities and just run people over 🛵💨💨

I noticed that when people sympathize with me about the problems I have getting resources or help, they immediately offer to help. Then when the time comes when I do need help, one says, oh I’m the champ of getting people help. I asked for help, the calls and texts go unanswered, the excuses start – saying phone is broke, I’ve been so swamped, but Facebook shows a much different story.

Another one, I’m told, oh I’m sorry I’m not myself I need a couple of weeks, I will call you, I promise, and then the weeks turn into 2 now going on 3 months. The same person posts pictures on Facebook drinking, partying, going to weddings, boating.

I help someone for years on things and the person says, I will help you because you’ve helped me so much. Then I ask for help, I get the rolling eyes and oh I don’t want to drive to far or they say I gotta go. I think for me it would be easier if you just don’t offer anything. This way, it’s easier for me instead of wondering, waiting, trying to figure out how to get food, meds, clean apartment, etc.

Truly annoying and a huge let down. Makes me wonder about people sometimes.

I made this one night struggling to sleep. The pinkish red resembles the throbs, pinches, electric shocks I feel. Tissue paper crumbled up resembles nerves always on alert waiting for the surprise from something related to MS.

Today, 02/11 is my 3-year anniversary moving back home to Michigan from a toxic and abusive environment that caused my health to deteriorate and my well being as a healthy person to spiral out of control. I took back control of my life. My independence will always be a work in progress. I will never again allow abuse to invade my personal safe core. My ramp, apartment, and support from friends was the very first step back to me. Today is a good day. 💜 #nomoreabuse #mymsandme #mswarrior

The other sleepless night, 2-3 days ago, because of pain. I did art and gave up around 430 am and took a pain pill. My face and nose was too red, splotchy ugly, the black & white photo was kinder, visual wise. #mymsandme #mswarrior #justugh

I learned a new MS term today in an MS health line group page called “the claw”. This is a thing that my muscles and nerves causes the hand to look like a claw. My first and middle finger is not too bad, but my thumb , ring finger and pinkie is bent like this everyday. I do art therapy to focus, but I want to share things that I go through everyday: like everything I pick up I drop, drop dishes, coffee, bottle water, can’t zip pants, coats or button clothes, sometimes socks and shoes are a joke to get on and when I grab things my thumb doesn’t let go of it. When I hold paper in my left hand to cut using my right hand with scissors sometimes I have to do things over because I’ve ripped something, cut off shapes to the point they look stupid, cut off letters, glue all over the place, paint and ink everywhere. My art therapy keeps my hand from being fully unworkable. I’m fortunate, there are people worse than me. Recently, had an EMG test the most god awful pins and electric zapping at my hand fingers and arm. I wanted to punch the doctor. Test results doctor/technician said it’s from the MS, duh! #mymsandme #mswarrior

Tales of my Chronic DiseAsed Life: a few days ago someone told me to hang in there, don’t give up, be patient we all have problems. I had to smile, nod very politely, be nice and show understanding where this person was coming from and agree. Do people really get it?

I miss my life – going to bookstores, going to Ann Arbor to my favorite places, visiting and browsing in art stores, antiquing, browsing vintage markets, garage sales scrounging, decorating my home, cleaning my home my way, folding clean laundry, organizing things my way, being in a relationship, going out to eat, going on a trip, driving, dating, getting together with friends for art stuff, coffee and dessert, book clubs, holding a book, sleeping in a bed, cooking new recipes, entertaining, taking a shower, vacations, living in Fla, earning a paycheck, earning a good salary, being disease free, my mobility in my hands and legs, typing 110 – 120 words a minute, not dropping things, being fatigue free, not being on government SSDI, better health insurance for copay assistance, dancing, the loss of my hearing due to the MS, riding my bike for miles and miles, having perfect balance, not having brain fog and cognitive crap, not having to depend on people to do stuff, drinking Mojitos, no food restrictions, the list goes on…

These legs used to be powerful. They used to bike long miles on weekends, dance in heels until the early morning hours, press 300 pounds on the leg machine with muscles very defined. My legs used to carry me up the stairs, climb ladders, and get in bathtubs. Now they just move somewhat with the aid of a walker. I can stand for maybe 10 minutes to cook something.