Have courage and be kind
**Random quotes found on the net that touch my soul…
Have courage and be kind
**Random quotes found on the net that touch my soul…
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.
Have courage and be kind
If only we knew when the darkness would end… Have courage and be kind
Some of my favorite things. When I’m feeling down, as if I can’t go on, reading these gives me hope. I hope you like them too. 🖤
Until next time, Have courage and be kind.
I’m positive that I’m unsure about everything right now. Day in and day out I lie in this bed and wonder if things are really going to change. When I say being positive is new to me, it’s a true story. I never realized that it’s very hard to keep a positive attitude. And when your life takes a turn like mine took two decades ago, it’s fucking hard. When I found help on February 23, I believed my life was going to change for the better. I’m still hopeful, but it’s much harder than I thought it would be. While I can move my legs and feet a little bit, I still am unable roll on to my side. I cannot sit up without something supporting my back. As I sit/lie here all I have this time. I’m looking at this blank page before me with tears in my eyes not even sure what to say. I miss the girl I was. I’m so angry at everything and everyone and at nothing and no one. Half the time I don’t even know what I’m saying or thinking anymore. I’m alone and I’m lonely but I don’t want anybody around me.
Most days I just want to scream at the top of my lungs for no apparent reason. The highlight of my day is watching the hummingbirds drinking the glorious nectar that keeps them going. Sugar water, go figure. I can stare at them and keep staring praying that they won’t fly away too quickly…
Is it so wrong two want to escape from this prison that is my body? I don’t want to sound negative or sad but nothing really is changing. We can’t afford a caregiver and I can expect my family to spend every free minute they have aside from what they’re already doing to help me. The whole physical therapy aftercare is a fucking joke. I can only call so many times without a return call. And in reality, if they do call I have no way to get there… So does it really matter. My husband cannot keep taking off as much work as he already does take care of me. My kids work and they shouldn’t have to take care of me. They have done that their whole lives already. And then there’s the pain… the pain that never goes away. The physical and the mental pain Is exhausting. I’m trying so hard to stay strong to keep that positive light flowing.
No one understands that when just sitting like a normal person causes so much pain, it makes a person not want to get out of the bed. The minute my hips go to the proper sitting position the pain latches on and won’t go away. My legs have plopped the side [frog legs] for over four years [11/2013] and when my hips rotate it’s excruciating. Pain meds, muscle relaxants, cannabis, CBD, nothing stops it. I’ve l earned to grit my teeth, quietly let the tears flow, bare it, and warrior on because I have to! I have orders to get ultrasounds on my legs to check for clots, an order to have x-rays of my hips and lower back to check for arthritis aside from my degenerative disc, an order for a mammogram that I’ve put off for the last 2 1/2 three years. Breast cancer took my sister from me I miss her so much…
And I digress. So as I said, I have all of those things I need to get taken care but have no way to get there. I know that my husband will take another day off work to get me to these appointments and that is why I don’t want to make them. It’s also going to suck big hairy donkey balls because of the pain that’s going to happen when trying to get me out of my wheelchair to lie flat for the x-rays. I hope they have some strong men working that day and maybe even a chaser of morphine.
On the outside looking in people probably think I’m lazy. Although I don’t know how I can do much more from my bed. I fought for the last two decades against MS and it didn’t change a thing. I Just kept progressing to where I’m now. But don’t worry, I’m still going to fight and do what I can from this bed to keep going.
I’m going to put my arm weights on every day and do my exercises. I’m going to have my family help me move my legs when they get a free moment. I’m going to keep moving my legs as much as I can even if it is only a little. I know right now I can’t move them very much, but with hard work it can only get better. Or it won’t. But even in the dreary depressed mood I am in at this moment, I will never quit. I will never end up in the hospital again after trying to take my life. [2/2017] I will never end up in the hospital again contemplating taking my life. [2/2018] Because what that month of physical therapy DID give to me was a glimpse in to what might be. I know now I was just a body in bed but while I was there I learned the tools to better myself. I have all the paperwork showing the specific exercises; I know what to do. And even if nothing changes, no one can say I didn’t fight and fight hard! One thing I learned and I’m still learning is there truly is something beautiful in every. I didn’t see that before. That’s how I make it through now. As I’m reading through this I’m not even sure what I’m trying to say. But, I’m in here and I’m saying it and that alone is strength.
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
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! ♥️
I had entered the hospital on February 16 and by now, with my best recollection, it is February 22. I had agreed to go to the rehabilitation Center at Palmdale regional. Or at least that’s what I thought. Again, I was heavily medicated with morphine and being in the hospital I wasn’t sleeping the best. I was just about to fall asleep when two very, umm, loud women came in my room.
The one woman mentioned that she was from a rehabilitation center in San Bernardino which was an hour plus away from my home. She and the other woman, the hospital case manager, both explained how ‘their’ rehab center had been in business for 22 years (maybe 24) and they were the best. Now in my morphine haze, I thought they were actually talking about Dr. Nasser’s rehab center. If I had been in my right mind I would’ve realized that his (Dr. Nasser’s) center was not an hour plus away from my home. But these women were so forceful in their ‘sales pitch’, that I just sat there nodding my head saying yes. Somehow they had heard about my interest in going to a rehab center, and ended up in my room pushing their place on me. I was a little taken aback because the case manager from the hospital was with this person. In my mind, this was a conflict of interest. [ya think] I felt as if these women were tag teaming me. 😂 I don’t remember much more except, I think, I agreed to go to their place. When they left I was very anxious and in tears.
As I was falling asleep, a man entered the room. Instantly I felt calm. He was good looking, he was dressed nicely, had very nicely trimmed and well-kept beard going on, and he was Zen like. He told me his name was Scott and that he was from the rehab center at Palmdale. So now my mind was going in all different directions. I explained about the two women that had shown up in my room and how they told me theirs was the best rehab center around. He smiled and told me that they are a well-established rehabilitation center. He explained that the rehab center at Palmdale was fairly new, only a tad over one-year-old. I knew immediately I was going to go with Palmdale. Not just because it was only five minutes from my home, but because this guy made me feel calm. His voice was even, he had a pleasant laugh, and he was not throwing me a sales pitch. I know I was high on the morphine, but he also made me feel high just talking to him. I told him my mind was made up and that I wanted to go to ‘his’ place. We talked a few more minutes and then he left. I was so calm by then I just remember falling asleep for a good four hours.
When I woke up, that evil little voice inside my head was making me very nervous. Telling me I wasn’t strong enough, that the pain would be too much, that I can’t forget I have primary progressive MS. As usual, I started to weep. And yes, ugly cry. And yes, snot running down my face. But then, as if a fire was lit inside of me, I dried my eyes wiped my nose and said to myself, “I CAN do this! I know it will be hard, but I know I have the strength and the courage to do it. My life and my families lives depend on this. I’ve got this!”
The next step…Life!
Love and Light
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:
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.
All about Dr. Hottie! His name is Dr. Thomas Nasser, DO. This part is about how he helped me start my new journey.
By now I had seen Dr. Muscles and awesome Dr. Pretty. [the psychiatrist] I truly need to find out their real names. All of a sudden the curtain opened and this very attractive man walked in my room. He introduced himself as Dr. Nasser. I looked at him and apologized because I told him they they sent me the wrong Dr. Nasser. You see his wife, Dr. Susan Nasser, is my primary care doctor. He laughed a little and said,” you must mean my wife.” All I could think of was they must be the power couple in the valley here. He explained that he was a pain management specialist and that he ran the Rehabilitation Renter at Palmdale Regional Medical Center. He had been told of my plight by Dr. Muscles. He wanted to ask me if I wanted to go to his rehab to get help. Again, for those of you that know me when I know something, I’m always right. I explained that I have primary progressive MS and there really isn’t anything he could do for me. Again, he just smiled and basically he told me, well then there’s nothing to lose right?
In this moment I had so many things going through my head. I was drugged up on morphine, and everything was still hazy about what had happened the day before. Hell this might’ve been the same day I truly can’t remember. All I could think about was being told for so many years there wasn’t much I could do once the progression started. The new medication, for the progressive forms of MS [Ocrevus], I could not go on. Something about being too disabled. I will talk about that another time. All the while he just stood there waiting for my response.
I looked at him and said. “I don’t think you know what you’re dealing with, but yes, I would love to try it.” I told him that my insurance probably wouldn’t do it, and he told me not to worry about that. When he left the room I was scared. The pain I have on a daily basis is about a 10+. But As my fellow MS’ers know we learn to deal with it. I knew doing this was going to be hell-a painful and hell-a hard. And there was that little asshole voice saying ‘it won’t work.’ And, again, I was scared. No, fuck that, I was PETRIFIED!! Could I deal with the pain? Could it, would it, really work. NO, it won’t work!! Nothing will help!! That damn voice would not shut the fuck up!! Then somehow… from somewhere… a strange feeling overtook me. HOPE!! Real hope. A feeling that I had lost many years ago. You see hope was my mantra. Then, hope became paralyzing. Hope became a word that made me cry. But, at this moment, hope was back. I’m not a great writer, so bare with me as I try to explain the feelings that took over. I see/feel dark and light. Dark and light clouds, if you will. My cloud was pitch-black and gloomy over me. I felt the cloud ‘open’ and light enveloped me. I was shaking and tears were streaming down my face. Fifty-three years of negative forces went flooding past me and a rainbow of positivity swept over me. Maybe, just maybe, this would work. Maybe, just maybe, I could get my life back and save my family.
Now the real journey begins…
Have Courage and Be Kind