Day 5 of my Multiple Sclerosis reflections. I remember things over the years that changed my attitude and how people perceive a person with a disease. For a long time when I shared to close friends my disease the reactions were not what I expected. Pretty common responses were: lose weight, you look fine are you sure, exercise, you’re f@@@ed, damn it’s cold in your house, you have to rest now?, comparing my symptoms to yours or others, wow you’ve changed what happened to you?, doctors were never helpful, lack of information, insurance at the time coverages on co-existing conditions, state & federal crap, knowledge of wellness, etc., dating, relationships, friends and family attitudes. Secrets I’ve kept because I was fearful of the reactions I would have to deal with.

Other people with Multiple Sclerosis that I’ve met over the years, the attitudes were very challenging and hard for me because I could never picture or accept that I would be like them. They were no different for me same as family and friends.

If I would have known that this disease is very unpredictable and challenging, I often wonder if I had prepared myself better for the major and common things that will come eventually, things would be easier. I do regret not planning better. Financial planning and long term care are two of the most debilitating and costly for a person with MS. Medications for Multiple Sclerosis are in the $200,000 mark. These financial burdens rob savings, life goals, and often are not helpful in many things.

Day 4 Reflections of my Multiple Sclerosis memories. One of the many things I struggled with was heat, stress, exhaustion, and fatigue. To this day I still struggle with these things. My home is always 68-70° year round, in any season. I am not able to tolerate temperature changes, I become very heat or cold sensitive and my body reacts badly and my stress accelerates.

When I was able to go back to work after my first exacerbation I learned very quickly people were not as forgiving or understanding of the disease, even though I was assured that I would have mega amounts of support. My fatigue and huge stress levels for the first couple of years was very hard. Stress at work was a huge killer, I went home many times in tears from being yelled at or the work environment was not really healthy.

I wanted to always hide, sleep and just be in an environment that was blissfully quiet, but I never told anyone. I got scared that people would judge, criticize, lose my job, and other things like feeling drunk, nerve pain in my feet, legs and sometimes my hands. When I interviewed for a job, I never told anyone I had MS. It freaks people out and often becomes a criticism or judgement type of environment. Some of how I felt about work actually happened to me I think in 3 different jobs. It was not very pleasant situation and it left me doubting myself for years.

When family and friends came to visit, I tolerated the comments and sometimes opinions that were like, you’re kidding me right. One of my biggest peeves were, you look fine, are you sure you have Multiple Sclerosis? Another one was oh my god! You gained a lot of weight, what happened to you? Comparing to now, wheelchair bound the looks from people, very different. Kind of wish I could go back in time, that way you couldn’t see I was sick or not able to walk.

Today is Day 2 of Multiple Sclerosis awareness month. Reflecting on my last 31 years, I am remembering my firsts with Multiple Sclerosis. When the neurologist confirmed what was going on, my first reaction was, thank you God it’s not a brain tumor. Boy was I naive and dumb.

My second reaction was, looking at the person Becky Reconnu Grainger that came with me, huh? What the hell is Multiple Sclerosis? She grabs my arm, asks the neurologist a question, but I cannot remember what it was. All I remember was feeling a big cloud of despair filling up my body. My ears and brain was filled with this huge mass of muffled noise. At that instant, I knew my life as I lived for 28 years changed forever. I was unmercifully thrown into the spiral of the unknown. I wished my sister was with me, I was cursing my stubbornness of telling her I will be fine, just go to work. Dumbest decision ever!

The neurologist was just rambling to me at this point. My stomache was nauseous from the migraine. My head felt like a million people were driving spikes in my eyes and head. I just remember can’t we leave now. I’m going to scream. I was still suffering from dizziness, double vision, face was numb, no taste buds, left side was completely lethargic and rubbery. I felt hopeless.

When I got home, thank for the nausea I held off from throwing up in Becky’s car. Dragged myself up the stairs into my room. Tried to lay down. My sister was asking me all kinds of questions. I could feel the stomach getting ready. I screamed at her, I have Multiple Sclerosis. Leave me alone. She leaves. I feel awful I was mean to her. I run to the bathroom and upchuck everything I had in me.

Mom calls on the TTD. Demands to talk to me. Karen tries to explain I’m seeing double vision. Mom is confused and convinced I will die. I tried to type on the TTD. Typing, reading the device with double vision, does not work well.

#mymsandme

March still is always a hard month for me because it marks my yearly Multiple Sclerosis anniversary diagnosis. This year is 31 years with this still no cure disease. I still remember my first exacerbation as if it was yesterday, year 1991, age 28. The double vision, lost sense of taste, left ear deafness, left side face, arm, hand numbness and paralysis, dizziness, nerve pain, and confusion.

On the day of my diagnosis, it was blistering hot outside well into the 90’s with extreme humidity (was living in Florida) and I had a huge ass migraine that was threatening my body into throwing up and passing out from the excruciating pounding and stabbing. My diagnosis was instant after an MRI scan, the neurologist looks at me with a blank look on his face and very little was explained.

I was given a prescription of huge doses of prednisone, a pamphlet to read, was told I will possibly feel better in a few weeks, and was sent home. The wonderful world of internet was not really big in 1991.

This was the beginning of my journey of the unknown. The years of no answers, being scared of losing my job or finding work (people freaked out when they found out you have MS), kept massive secrets from people, the lack of understanding from some, gaining so much weight from the meds that still hinders me today, the extreme fatigue, challenges in learning about the disease, food, triggers, mood swings, losing myself, meeting others who had/have it (the attitude from them was you’re f@@ked), and more.

Still here and surviving the best I can. 💪🧡💪

Gratitude for me was hard today. I am grateful for my diligence by not giving up and I handled my life advocating, pushing people to help me with medical referrals, and getting it done.

Having to protect my mental health is something I have recently learned that it is important to take care of and the struggle is very real not to let it consume my thoughts. . But it is not about them, it is about what’s best for me. So, I did the long, neglected, not looking forward to filing the report to the patient services. I’m finally relieved it was done, I hated that moment.

I know this happens to all of us, life changes. Our likes, dislikes, patience is a virtue, being tolerant of people, body changes, illnesses, and so on. I know I’m not patient or tolerant of things because my life has changed. Yesterday, I turned 58. I’ve had Multiple Sclerosis now for 30 years and I haven’t seen any new big breakthroughs with this disease or with other help needed to function on a daily basis. Insurance and the government are huge barriers to trying to survive, expenses are astronomical, living is not as simple.

I think my biggest challenge with my patience is people comparing my everyday challenges and things to their own struggles. This irks me. I am in a wheelchair struggling with nerve pain pretty much 24/7 and constantly battling fatigue. One person tried to tell me that what I am experiencing everyday in terms of trying to cook, clean, shower with my mobility issues is very similar to what they had to go through with their deaf child. It took a lot of energy just to nod, bite my tongue and just kind of grimace-smile. Other things that often hit me like a ton of bricks is when I share how I feel when I’m not able to go do stuff because where I live is not much going on or just not able to get around, I am reminded that I have celebrated things before with friends “back then, the good ole days”. It is a painful reminder of what my life was at one time.

When I talk about how I feel it’s compared to sone one else’s life or I’m told I need to do art. Doing art does not come quickly for me. It takes a lot of effort on my part to get things out on canvas. Art cones in spurts. I just cannot draw something on a moments notice as quickly as someone can spit it out. Should I say something? I know I will run into the risk of upsetting the other person or their attitude changes towards me. I just don’t know.

It’s not about me being sick or well. I’m fed up. I’m honestly, truly fed up. I will go out of my way to help, encourage, provide resources for anyone, be an advocate, I’m tough. But I’m also human. When people ask me for help, and expect services, consulting for free, advocacy, write letters, make calls all of these things for free and then I have to go through verbal and mental abuse from them in the process, how do you think that makes me feel?

I have to start charging for my time and shutting people off that make me feel bad for my choices, decisions, opinions, guidance, services, advocacy, and oh there’s much more. I’m getting angry thinking about it. These things and actions are a lot of work for me physically and mentally. And it makes me sick mentally and stressed when people get upset with me. This is WRONG.

With my own years of education and learning, I’ve been putting up with deaf and hearing people as well as professionals like doctors, agencies, state government officials insulting attitudes and their verbal diarrhea excuses and attitudes crap, I’m done!

My knowledge constantly questioned and compared with especially with nutrition and food, years of continuous research and expertise, I’m done giving suggestions and advise on chronic health, diabetes, cancer, continuous chronic pain, MS and other stupid health crap. I’ve done things for free in terms of advise on wellness and health, 501c3 expertise, nutrition food, weekly food plans geared and designed for a person based on health and wellness, with my business at once upon a time – Deaf Positive Attitude Health, (DPAH), other Deaf organizations that I’m afraid to mention here because of legal reasons. I’ve been told I will be arrested if found on the property, the people in the Deaf and hearing communities continuous lack of respect, other Deaf and Hearing colleagues criticizing my education, knowledge, and encouraging others to prove me wrong, going behind my back without me knowing and destroying my reputation with communities.

For years I’ve endured being told my work and my resume is a fraud, People say I’m a fraud, I’m being screamed at by employers inches from my face, bullied and screamed at by officers of non-profit organizations, being taken to restaurants because I was told it was a brain storming session but turned out to be a insult, demeaning, and bullying session that carried on into a community meeting later with being insulted and verbally abused by members and officers. Employers taking advantage of my time and knowledge or demeaning what I know, and got burned in the process by not being paid or being forced to resign, but the message told to people that I was fired or quit. I’m still doing things for free, ring triggered all the time, get beat up verbally, mentally, and used as a punching bag in the process. I haven’t learned anything from this. I’m beating myself up constantly.

My future finances are really slim and I need a van and other things to improve my own quality of life. I spent hours and hours on research, planning, typing, developing, brainstorming, researching, then was told wait, get pushed aside, harped at, and shoved on hold. This is my time wasted. I have to charge $25 to $30 an hour. Lawyers, doctors, nutritionists, counselors, accountants, bookkeepers, therapists, artists, charge 3 to 4 times more than I. I’d be very happy to help, but only if I’m paid for my time.

Now I’m in a wheelchair, I cannot walk, my body reacts terribly to stress and verbal mental crap. All these people, you know who you are are still working, living, driving, walking, making plans, and I’m disabled and dependent on others for help and things I need in life. I’m sorry but f@@k you.

So, I’m getting ready to leave my comfort zone and use public transportation. My mind starts whirring 100 mph, suppose my power wheelchair breaks down at the store , restaurant, doing errands, how do I get home? How do I get my power wheelchair home?

I took a few minutes today to figure out back up plans for stuff with my power wheelchair.

I called National Mobility & Seating in Troy, where my chair was purchased. The wonderful brilliant customer service dept said put the chair in neutral and push it home or to the office. The chair is 400 lbs plus me so about 5-600 pounds, who will push me 5 miles home or 45 miles to Troy MI? 2nd suggestion given – Medicaid has transportation to bring me home. Yes, if the chair is working and if I have Medicaid, which I do not. 3rd suggestion push your power wheelchair into your vehicle to transport it. I don’t have an accessible vehicle, hence the public transportation in the beginning of this post. 4th suggestion call us to hookup with a remote technician and fix your wheelchair through the internet. This was never told to me in the 1st place and my chair is connected to the internet? No, it’s not, I checked. Well ma’am, says Sarah in customer service you are asking for hypothetical solutions – you just need to call 911 then. 🤬😡🤯😤😠

** WARNING ** this post has a bad word/picture in it. If you will be offended, scroll on! I don’t care what your feelings are at the moment! BUT… I still ❤️ you all, regardless.

This morning after a very rough night, attempted to make coffee ☕️ mobility issues, neuropathy pain.. blah, blah, blah 😑 . Slept till 10:45 am, saw that I got a gazillion texts on my phone, but 🖕that, coffee is first. Took forever to perk, drip, percolate, whatever! Finally, ☕️. Got my cup then spilled 1/2 of it 🖕that crap. Drank my beloved 1/2 cup of ☕️.

Made 2nd cup 2 hours later, had to pee. After coming back from bathroom and struggling with my stupid body, came up to the coffee pot, I forgot to turn it on ugh!!! 😩 I felt so defeated 😞. Turned on the coffee pot, waited til it perk, drip, percolate, whatever! Finally!!! ☕️ drank 3 sips, now exhausted 😴 can’t finish. Am in my chair lift recliner getting ready to nap 💤 . Life of an Multiple Sclerosis peep! 💪🧡💪

A pet peeves! When you ask a person to text you when they arrive at your place because I do not have a doorbell nor can I hear door knocks, and they don’t. Then, when I confront them, they tell me to sit at my kitchen window and watch for them, so I do not miss my food delivery, cleaning person coming to my home, or other issues.

So, suppose I did not have a window in my kitchen? Do not tell me to sit somewhere for your convenience, I gave you two ways to contact me, my phone number, and my text number. Filing a big fat complaint about this person to the agency.

My second pet peeve!! I said, please do not call me at this number, I am Deaf, text me, if lost or need more directions. 45 mins later from the first text saying food has been picked up and on way. Well, the food is cold, the driver was sitting across the street, calling me because they couldn’t find my place. Food delivery person says, “can you sit outside and watch for me to arrive?” My thoughts…