Short and sweet. Have courage and be kind!￼
So this post might be a little long. And you don’t have to read I’m just trying to get out what I’m feeling. We are going to attempt a shower today and I’m already having anxiety. But I have to do it because PTA bed baths are not doing it for me. 😋
I just don’t want to roll over or get in that fucking Hoyer sling. It hurts so much even when I have a nice supply of cannabis on board. 😉
Some of you know I have another fracture in my back at L3 and I was supposed to see a spinal surgeon like last month, but I can’t. I don’t want to go because I don’t want to get up. And the worst part about that is, I really want to get up! I know that does not make any sense. LOL
Without help I don’t know how I’m going to ever be able to get out of this bed. But, I will keep doing what I’m doing like wiggling in the bed LOL I have some serious dance moves for someone who is in bed. 💃🏻 I just want out of it. But when I’m lying down or even when my legs are up and I’m elevated I don’t have any pain. So thankful for my adjustable bed. 🙏🏻 The minute someone moves my legs I literally want to die. It feels like my hip is going to snap and my leg is going to fall right off. Sounds like something out of a criminal minds episode. Childbirth wasn’t as painful. I will take a contraction over this any day. 😳
We rolled a couple of pillows and taped them and put a cover on to jam them on the outside of each leg to roll my hip as I’m lying down. Oh holy man! The first day I could only tolerate about five minutes because the pain was intense. But yesterday I actually kept them there for a few hours. I’m hoping that eventually I will be able to get my legs moving without pain. I don’t care what the doctors say and what my MS is going to do with me because I know if I can get rid of this pain I will be up again. I may never walk again but I will be able to transfer if I can just combat the pain. And thanks to my colostomy and urostomy I won’t have to worry about running to the bathroom every five minutes anymore. 😂 Statistically the odds are against me but I’ve never been a fan of statistics. LOL Do not tell my daughter that because that is what she graduated with honors in. 😜
I’m putting on my little arm weights more because I totally slacked off on doing my arm exercises because depression hit it once again. But my little inner child showed up and beat the crap out of depression. Hopefully it’ll stay away a little longer this time. 🤞
When things got really bad after my surgery in 2014 and I completely fell into a very dark place. The surgery almost took my life and at that time I wished it had. I think a lot of people thought that it was getting to the point where I was nearing the end. I felt it, I even had a doctor tell me my outlook was grim. It wasn’t until February 2018 that I woke up. That anniversary is coming up and it scares me. But it also reminds me that I can fight and can get better. I just want people to know don’t give up on yourself no matter how bad it might be! I have been to the depths of hell and I’ve tried to leave a couple times. For some reason they didn’t want me. LOL
Well now that I’ve written a book and I probably lost most of you after the first paragraph I am going to get myself pumped so I can take my shower and not be afraid. 💪👊
I’ll be back… Said in my best terminator voice. LOL
Have courage and be kind!
Most people at this time of year are thinking about their New Year’s resolutions getting ready for all the new things to come. I’m lying here completely lost… I feel like I’m in the twilight zone. This year my house was not decorated for Christmas and it was actually just another day. The holidays are not the same for me anymore because I can no longer get up and get my home decorated and make it feel Christmasy. I’m telling you the Christmas times when I was better my house was decked the fuck out and looked awesome! Oh how I miss that!
I’m just void of emotion right now. Like everyone on the planet none of us knows what tomorrow will bring. Although I do know… It’s just going to bring more of the same of me lying in my bed looking around at my four walls wondering why I’m even here anymore. What is my purpose? What is the point of life when you can’t live it. I know I’m blessed that I get to wake up every morning… But that’s about it. I wake up and I have a couple choices; watch TV, play on the computer, watch TV, play on the computer… you get the idea. 😉
I’m not trying to be a Debbie downer I am a realist and quite honestly I hate being a realist. I never was until this piece of shit disease put me in this bed for the past five years. And before that put me in a wheelchair. I’m angry, just like I mentioned in a blog a couple of days ago. I don’t know how to get rid of that anger. I look around and I see a lot. I watch people complain about every day issues like not having enough time in the day to get their kids wherever they need to be or to grocery shop or clean their house. What I wouldn’t give to have those issues. My wish for people is too slow the fuck down and see the beauty around you because quite honestly it could be taken away from you at any moment. A dirty house is a beautiful thing because it means it’s been lived in. And having to run around and take your kids everywhere isn’t a chore it’s a blessing that you are able to do it. I know that I took so many things for granted and I wish I could go back and spend time on certain memories and open my eyes more and be more present. But you cannot go back so please I implore you, be present and if there’s something you want to do do it now. Because one day you may not be able to and I guarantee you will have so much regret. And trust me, regret is paralyzing!
I’m not sure how much more of a fight I have left in me considering there’s nothing for me to fight with. There are no medications I can take so I just have to pray that my MS will be kind to me and not keep progressing. OK I’m kind of laughing at that last sentence because I am primary progressive so I know that it will keep progressing… I’m just asking it to slow down a little bit. LMAO I really wish that MS were a person because I would beat the living hell out of it.
I think the worst part about being trapped in a bed is the loneliness. Nobody really wants to sit in your room with you whole are you lying in your bed, even though I’m funny as hell and quite enjoyable to be around. 😂 I really am! If it weren’t for my beautiful doggies I honestly don’t know if I would still be here. I can’t expect my family to constantly hang out with mom. They have their own lives. And my husband cannot spend every waking minute in here with me either. Everyone complains that my room is so cluttered and I really should throw things away. I don’t think they understand that this room is my whole life. What they see has junk and clutter are things that make me smile. Stupid things like my living dead dolls or my Lucy collection, my lava lamp, etc. Things that to someone else wouldn’t mean anything but to me they mean everything because they are all that I have! 🖤
So please, for me, do me a favor and instead of making resolutions just make a promise to yourself to be present for every moment that comes your way. It could quite possibly change your life.
Have courage and be kind…
Lately I’ve been realizing that I was always one of those people that worried about what other people thought. I know most of you probably don’t think that, but that’s exactly how I was. I hid it very well with my “tough“ persona, but I always wanted to please people. My time in physical therapy rehab changed me completely. I’m now the person that I always wanted to be and if people can’t handle me, then I don’t need them in my life. I’m going to be that tough girl who fights and doesn’t let people walk over her anymore! I used to go out of my way to do things for people that never really cared. And I don’t expect a pat on the back of or even a thank you. But you know those people I’m talking about. The ones who we just have to be friends with when in reality they are no better than us. But for some reason we always thought they were, so we would go out of our way to get them to be friends with us.
I just never thought I was good enough. I thought to make friends I had to buy things, always be the ride, always be the brunt of jokes. I allowed it so it’s my problem and not theirs, but I will NOT allow it anymore. To be friends with me you have to take the good with the bad, and all of the crazy. I’m not going to change anymore for anyone! It’s nuts how it took me nearly 54 years to figure all of this out. Better late than never comes to mind. ☺️
I lie here at night, and when I can’t sleep I just have so many thoughts that go through my head. I just don’t know how to put it down on paper. So I talk text and say what I feel. Half the time I can’t remember my thoughts from the night before. I’ll just blame MS cog fog. LOL I mean if you have to have a disease then by all rights use it as a great blame tool. It’s those voices in my head that don’t let me quit. It’s those voices in my head that make me strong. It’s that little inner child that comes up to the surface when I need her.
Self discovery that’s really a great thing!
Have courage and be kind…
I went to the doctor last Thursday. After the doctor we went to Walgreens to pick up my prescriptions and then we went to get something to eat. I’m still exhausted from that day. I’ve had two in home physical therapy appointments and the pain is intense. Nevertheless, I got through them both. On the days where I feel like I just can’t go on, I just want to stop everything. I ask myself why I’m doing this as I know it’s going to hurt. I start to second-guess myself. I truly am my own worst enemy!
So, instead of quitting, I push on. I remember why I’m doing this, and that makes me focus.
Just had a surprise shower after PT day 2. [not my normal shower day] I am back in my bed resting and re-charging for tomorrow!! Peace out … for now!
Have Courage and Be Kind
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:
Motown Returns to the Apollo,
Showtime at The Apollo,
Dick Clark Productions,
Developed Talent and Acquisitions Dept; set up acquisition deals with major labels and other content providers.
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.
Have courage and be kind.
Facebook has brought me together with some fabulous people who battle the MonSter with me. Heather Leffel is an amazing young woman who shares so much of herself and of the struggles we, fighting MS, go through. Recently she did a video on “MS and the Losses We Suffer“. Together, with Kate Milliken, a video was compiled of excerpts from people suffering from MS [all types] and the losses they have experienced.
I am honored to be a part of this amazing project! I believe the Universe sends us messages from time to time, when we truly need them. I have been going through a very rough time as of late. I was losing hope… Then, BAM, the finished video showed up on my FB feed. As I watched it through my tears, I felt the hope returning to my soul. I was so inspired by those who shared their hearts.
So, without further ado…