When my alarm goes off at 9 AM to remind me to take my morning medication, I grab my bed remote sit up a little bit, take my meds. Then, normally I will call to my son to bring me a cup of coffee and try and start my day. However, for the past week or so my alarm goes off, I will grab my remote to sit up and take my meds, and then I just lie back to go to sleep. I was in that mode of, why does it matter if I wake up right now, the same thing that happened yesterday it’s going to happen today so who cares. When you’re bedridden, one day rolls right into the next. Every night I go to bed I know that the next morning I will be in the same place doing the same things for the whole day.
Then, finally, at around 1 PM I told myself and to pull up my imaginary bootstraps and wake the hell up. It was really hard to do. I literally saw no reason for me to actually awaken. But, I did, and I made it through this day. Minute by minute is the only thing I can hold onto. Any longer than that and I’m not sure what would happen…
The one thing I do know and I am very sure of… I AM an MS Warrior!
Right now it is 2:45 PM on Thursday. I just woke the hell up. I guess it’s better than yesterday when I woke up at 3:30 PM. I went to bed at reasonable hours both nights but my body just does not want to wake up. Maybe it’s because I know what it’s waking up to. Maybe after all this time I’m just sick and tired of dealing with it. I’m just not quite sure why it all is hitting me so hard right now, but it’s it’s as if the light at the end of my tunnel is a locomotive coming right at me. I’ve been searching my mind as to why everything is hitting me so badly and I cannot figure it out. Nothing has really changed in the last 4.8 years of being completely bedbound, fuck it the last 5 years ( yes I am rounding up ) to make me feel so lost right now. Or maybe that is the problem, that nothing has changed. I am a grown ass woman who has never been afraid to speak my mind, tell it like it is, or go toe to toe with someone who is a complete dickwad. 😈 But, this piece of shit MonSter that is MS is a different kind of enemy. It is very sneaky and it takes away from your soul not just your body. It not only affects the recipient it affects everyone around them that loves them.
I really am trying to find that blessing. It just seems so out of reach. I know everyone says that I’m lucky because I have the gift of life. And believe me I completely understand that. But is living in a bed every day, every night, every week, every month, really living? I don’t think that people understand that this part of my journey is not going to change. I can’t do any of the treatments so I’m as will continue doing what it does and it will continue to progress. So what does somebody do with that? How do you find that blessing knowing that the help that is out there now for your disease, you are not allowed to do. So I think I just have to say fuck it and be like cookie monster and when it’s unpleasant just eat the fucking cookie. A medicated cookie but you get the idea. 😉
Tomorrow is my pain management appointment with Dr. Nasser. Once a month like clockwork. I have a list of things to ask and the way I’m feeling I’m pretty sure I’m going to end up being a little forceful when I ask. By forceful I mean I will probably be in tears begging for someone to help me. 😭 Yes, ugly tears. I’m already scared to death to go because I know how bad the pain is going to be when I’m lifted in that Hoyer lift and put in my wheelchair. Hell, just rolling me over to fix my clothes and get me in the lift sling is Is making me sick to my stomach. Fuck fuck fuck you multiple sclerosis!
A little bit of advice before I go… If you yourself have MS and are still able bodied, make a list of everything you want to do and do it now! Don’t put anything off because people with our illness we have no idea what the next day will bring. And if you’re Normie, a person with no afflictions, the same goes for you. Make a list and do the things you want to do now, because even though you don’t have an illness, shit can happen in the blink of an eye. So do what you want to do now. Please I beg of you, don’t put it off for another second.
To literally and figuratively be trapped in your own body is tantamount to living in a horror movie. Horror movies are my genre and most days I feel like I’m staring in my very own movie. I wonder when I’ll get my star in Hollywood? 😜 That feeling of claustrophobia that feeling of been unable to move is a feeling no person should ever have to endure. Unfortunately many of us have to live this way every day of our lives. The Normies ( people without any type of illness ) go about their day in a bubble. I know, I was there once. While I was always a person to help others, by opening doors for someone in a wheelchair, by reaching things for people who couldn’t, or just to have a kind word for someone, the truth is I never really saw the person. I could feel for them and wish I could help them in other ways but I never quite understood just how it was living that way. Now that I am that person that needs help I realize just how much our country needs to wake up and give love instead of hate. I’ve had people push me aside in my manual wheelchair because they needed to get something and they couldn’t reach reach something with me in front of them. It didn’t matter that I was looking at something to purchase, all that mattered was I was in their way. I was a third class citizen that didn’t even need to be asked if I could please move for a second. Trust me that person never did that to anyone else ever again once I was through with them, but what if I had been someone that didn’t have a voice.
That’s the question in my mind every single day. How will I break free, or will I ever be able to. If I’m truly honest with myself I know that I will not get back what I have lost. I’m not saying that in a sad or depressing way, I’m saying it in a medically proven way. If only one doctor had said this to me I probably would’ve laughed at him, but it’s been several doctors have said this to me. I know they’re not trying to discourage me or hurt me they’re trying to give me reality. They don’t want me to get my hopes up so they’re giving me statistics regarding people with my severity of the disease. With primary progressive multiple sclerosis you constantly progress. There is no remission there is no 10 minute break. 😉 There is no relapse that you will come out of and be OK. You just continue to get worse. So now I’m trying to resign myself to the fact that my future, at this moment, isn’t very bright. As you noticed, I said at this moment. While I am a realist, I am also a dreamer. So I will continue to do my exercises, I will continue to fight this MonSter. But I’m scared. Even those with MS will, I pray, never have to be trapped like this. The disease itself is horrific but the thought of spending the rest of my life trapped in this bed is completely and utterly paralyzing. And I can say, with the upmost truth and honesty… I want to live, not just exist.
This whole positive, optimistic thing is really new to me. I grew up in a somewhat negative family. Don’t get me wrong, there was a lot of love, but also negativity. These type of behaviors are learned. When you’re around negative forces it rubs off on your psyche. Now there were happy, positive times for sure, but looking back a lot of negative as well. And it was ‘taught’ in previous generations. It didn’t just start in my family, and it took me 53 years to realize this. The realization came while I was in rehab. The positivity train that that took over during that time made me re-evaluate a lot of of my life.
Again, there were a lot of positive things in my life. Unfortunately, negativity always took over many of the positive aspects. The issue I am running in to now is others in my life aren’t in the same place I am. I’ve also realized that the so called positive people in my life, truly were not all the positive. They preached positivity, but honestly didn’t live it. I have had to rid myself of many toxic things and/or people as of late. And while it is sometimes sad, I am actually okay with it. I finally understand the concept of, you have to take care of yourself first, or you cannot help anyone else.
I have found myself more than once falling back into that angry negative place. When that happens, I pause, take a breath and move on. I just give myself a little space from the negative forces that be. It’s been a very hard journey to get where I am at today. I will not let anyone take away my new outlook. Sadly, I feel like there are a few out there trying to do just that. Like I said, they’re still in that not so good place. I truly hope they can find their way out of it, but either way I will not go back.
We truly are in charge of our own happiness no matter the hardships in our life. Believe me, it would be very easy for me to just lie down and die. And, I almost did just that. I will not go back there and I will not let anyone steal my happiness. I will not let anyone takeaway my new positive, optimistic, and determined heart. I have worked too hard in the last two months to get to this place. I also will not apologize for it.
Just a small glimpse in to the life that is me. I will get back to the journey that got me here… eventually. I hope those of you following/reading my blog are living your life to it’s fullest potential. We ALL deserve to be happy, no matter the circumstance.
Yesterday I went to see my neurologist. I finally got to use my new wheelchair.
When the doctor came in the room he looked at me and said, “You look so good!! No one would know you have primary progressive MS.“ I’m never really sure what to say when I hear something like that, so I just smile. We discussed the infusion, the newest DMD (disease modifying drugs), Ocrevus. He said he would get an appointment for me and the drug rep as soon as possible. He is very worried about the ‘serious‘ side effects. We all know that the medications for MS do come with very serious side effects. The problem for me, is my urostomy. I am prone to kidney and bladder infections as well as kidney and bladder stones. Because my immune system is overactive, it’s fights off some of the infection. If I am put on a medication that suppresses my immune system, I could very easily become septic. So I’m kind of screwed. At least he is giving me the option and I will be talking to the drug rep about it. Hell, I haven’t had a cold or a flu for so many years thanks to my overactive immune system. The only time I have gotten sick was when I was on a couple of the DMD‘S many years ago.
Then I did my normal, “I need prescriptions“. The main medication I need is the daily antibiotic I have to take, twice a day, for my issues. Rapture! LOL and we definitely cannot forget my antidepressants. Without those no one wants to be around me. 😈
After that we went to Walgreens to pick up my new prescriptions and then we went and got some dinner. I was only up for about three hours, but it totally kicked my ass. Today I am running on empty.
Sadly that is what MS does to us… At least the majority of us. It’s very rare that we can go and do things, and then be able to go and do things the next day. It’s very depressing, especially when you were someone who was always on the go. This disease changes is and takes away everything we once were. That is why we must be stronger than our MS. We must fight it every day, which sucks hairy balls, but that’s what we have to do. And we do it because we are warriors!
Have courage and be kind
** I will be back with my positivity journey very soon. So much love to all! ♥️
Taking a small break from my journey to pay tribute to the woman, who I know, helped to save my life.
Madame Carolyn B. Baker March 2, 1948 ~ January 30, 2018
We ‘met’ July of 2012. Both of us were/are big on animal rescue. I was commenting on a post regarding some asshole rescue. I noticed two disgusting humans attacking Carolyn in the post. Carolyn was holding her own, [she was and will always be fierce] but I could not pass by without defending a woman I did not know…yet. I went in and began to rip these two asshats apart for their disgusting name calling and attack on Carolyn. Needless to say, we became instant friends. We messaged each other and soon would be talking on the phone. We saved many babies that ended up in the pound by cross-posting and annoying the shit out of people. LMAO
Carolyn was someone who loved the Lord and was not afraid to share her love. I had lost my faith and she knew this and never made me feel bad about it. She would always let me know it was okay, but she would still pray for me every day. She said a prayer for me over the phone one day, and I felt chills all over my person. People pray for me on the daily, and I appreciate it, buy I never felt a presence like I did that day.
I knew she was an amazing soul, I just never knew she was also the most humble soul I would ever meet. She never talked about her past. One day while on the phone, I asked her about a picture I saw of Ray Charles and her. She laughed a lil’ [how I loved her laugh] and said, “Yes, I knew him!” laughing Knew him… she not only knew him, she produced records for him. She was a Warner Bros. Record Executive. She was an Associate Producer and Talent Agent for the ‘Dinah Shore’ show. This is just a small part, and I mean small part, I nicked from her page:
TALENT EXEC · April 1971 to June 1977
Motown Returns to the Apollo,
Showtime at The Apollo,
Dick Clark Productions,
Founding Principal · June 1979 to March 1982 · New York, New York
development and launch of channel
Developed Talent and Acquisitions Dept; set up acquisition deals with major labels and other content providers.
Carolyn B. Baker llc
Chief executive officer · 1981 to 1988
1977 to 1978
TALENT EXEC, Marketing Kool and Gang , Grammy, Emmy (music), Smokey Robinson show, Motown Returns to the Apollo (85)
I could brag about this brilliant beautiful woman for days. She deserved so many kudos in life. If I had not asked, she never would have said anything. Like I said, HUMBLE, truly humble. There are parts of her story that will remain with me. Just know that she was STRONG, A WARRIOR, and A GODDESS!!
A few years ago her trusty Mac died on her. Times were tough at that moment, so I gave her my old MacBook Pro. My husband took it to work with him at NBC/UNI. She didn’t want us to have to take it to her, especially in the shape I was in at the time. Typical Carolyn. She needed no directions as that girl had been there before. 😉 She pulled up in her Vintage Benz, got out, went to my hubby, and hugged him hard. She stepped back, looked at him, and hugged him hard again. She told him, “Take care of my girl!” Now, for the kicker… I was so jealous that my husband got to hold her and see her, because I never had. ☺ We made plans for the six years we knew each other, but health issues and life always got in the way. Yet, I loved her like she was family, and she loved me back. In her last couple weeks on this Earth, she fought hard. She called me during that time and said, “God is good, I’m getting better. We are going to get together young lady!” Then, just like that, she was gone.
I will never be able to do her life justice. I know she is the reason I’m alive today. I know she was in my room when I came to my crossroads. I know she was with me on the day of her service, that I watched via live stream in the rehabilitation center. I felt her presence then and I feel it now. She was bold in life and she is bold in Heaven!!
I miss her laugh, I miss her voice, and I will miss her forever.
She once told me, “Girl, things always happen for a reason. We found each other, didn’t we?” Followed by her beautiful, infectious laugh.