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Positively unsure…

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.

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Being Defeated is NOT an Option!

Yesterday was not one of my better days. I had in-home physical therapy in the morning and then my appointment with Dr. Nasser in the afternoon. I was feeling okay in the morning and after physical therapy. All of a sudden it felt like a Mack truck had run over me. I just started feeling queasy and was having a hard time sitting up. At around 1 PM we started getting me ready for my appointment. I am unable to dress myself so I need to be rolled and moved a lot. The pain was unimaginable. By the time I was dressed, leg braces on, and Hoyer lifted in to my power chair, I was done! I could’ve canceled my appointment, but I knew I needed to go. He deals with my pain management, so I needed to go badly. The drive was excruciating. When we got there it was 83°, and heat is not my friend. The combination of everything started to bring about a little bit of depression. I was angry. I’ve been trying so hard to get better and to feel better… then this hits me. I felt like I was being punished for getting dressed. LOL I know that sounds crazy, but that’s how I was feeling.

Bottom line, I was feeling defeated, I’m not gonna lie!

By the time I got into his office I felt like I was going to be sick. Then I realized that my Hydro flask had leaked water all inside of my purse. It looked like I peed myself. Which, I’ve done before, but this time it wasn’t me. LOL Roger took my purse outside and dumped all the water out. He left to go upstairs this doctors appointment and I went into the room for my doctors appointment. The room was so small and it was so hot in there I thought I was going to pass out. Thankfully Roger’s  appointment finished before my doctor came in the room, so he came in with me. Sometimes I just need my hubby. Sometimes! 😉

My doctor finally came in the room, we exchanged pleasantries, and then took care of business. I got my medications refilled and hopefully four more physical therapy appointments. I explained I was a little perturbed that someone had dropped the ball because it took three weeks before I even got physical therapy started after I left the rehab. But, I have to let that kind of shit go because all it does is upset me. Those of us that deal with chronic illness and doctors know that many times we are not the priority. While my time in rehab was awesome, follow has not been the best. Luckily, I am a little bit of… okay a-lot-a-bit of a bitch, and when I set my mind something… nothing will stop me!

We wanted to go grocery shopping after our doctors appointments, but that wasn’t happening! By the time we got home my pain was so intense I just wanted to get into my bed and hide under the covers. And that is what I did! There were a lot of tears and, again a lot of feelings of defeat. I started second-guessing myself. All I could think was, if doing the little stuff that I did was going to knock me the fuck out like it did, then what’s the point? Is it ever going to be easier? Do I want to keep putting myself through the horrific pain every time I move? The answers are: I’m primary progressive and yes the little things probably will kick my ass, it’s probably not going to get easier, and I do have to put myself through the pain if I want to get better.

I may be down right now, but I will never be out.

Have Courage and Be Kind

** again, I’m sorry for bad grammar, typos, run on sentences. I’m a business major not an English major. LOL PEACE!

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Must re-charge…

Yesterday I went to see my neurologist. I finally got to use my new wheelchair.

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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.

Must re-charge

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! ♥️

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My Angel in Heaven – Carolyn B. Baker

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

Her love, Splash, that she got for the love of her life, her God-daughter Barbara.

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

Her love, her God-daughter ❤

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.

From her page. Something she always said. ❤

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:

CBBaker
TALENT EXEC · April 1971 to June 1977
Talent Exec:/Producer
Grammy’s,
Motown Returns to the Apollo,
Showtime at The Apollo,
Dinah,
Dick Clark Productions,
etc.
etc
MTV
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!!

I bet she burst out laughing after this shot!

carolyn

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.

My Angel in Heaven

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.

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The Strength Inside – part III

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

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‘Have Courage and Be Kind’ is a beautiful quote from this 2015 version of Cinderella.
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The Strength Inside – part II

I’ve been thinking of a way to approach the week after I hit my crossroads. When the ambulance dropped me off at the Antelope Valley Hospital I wasn’t sure what I was going to do or why I was there. I explained I had a bad infection [captain obvious], but I said nothing about my suicidal thoughts. So they did what they always do, hooked up my power-port, and filled me up with morphine. Then, of course, they started a treatment of antibiotics. I was in and out and of it and was feeling pretty good with the morphine. At some point, and this is where gets hazy, a doctor that I had not yet met, showed up in my room.

And so it begins…

He was completely shaven, bald as a billiard. Tanned skin and quite good looking. It was very obvious the man takes very good care of himself. But, then he pissed me off…for a minute. He proceeded to ask me why I was there. WTF, look at my pee bag dude, it’s dark as fuck. Yes, I said that. He then asked me ‘why I did not go to my doctor since obviously it had been this way for a while’. I just looked at him like, seriously?!! Then he kept asking me over and over again, why was there, why now, why was I there, why now!!! Those who know me, know I do not like to be pressured or put on the spot. So I looked at him like he was fucking crazy and an asshole for asking me that over and over again. Then, he asked me again, ‘WHY ARE YOU HERE!!! I snapped, and 21 years of my MS diagnosis came out like verbal diarrhea, 21 years of frustration came pouring out. I was screaming at that point… ‘Do you want to know why I’m here, do you really want to know!’ I was screaming and crying telling him, “FINE… I wanted to kill myself is that what you want to hear. I was 32 years old with 3 babies under 3 when I was dx’ed. Why did God forsake me?!! Now I’m 53, and my kids have never known me well. Now, I’m paralyzed from the waist down and for the last 4 1/2 years years completely bedridden. Now my arms stopped working. I told my my family when my arms go, I’m going too!! I could hear my daughter asking me if I was going to go now? My family is dying because of this disease because it has taken over my house. My family will be better off without me! I’m a burden and all the doctors did was throw me in bed and drugged me up and ripped open my stomach because nobody wanted to help me. Instead they threw a colostomy and a urostomy bag on me and left me in the bed to die. My husband is dying inside my children are dying inside because nobody gave two shits about us, no doctor wants to really help us! I didn’t go to the doctor because I can no longer afford a caregiver and I had no one to drive me!” As I was screaming I didn’t realize that there were about 20 people in the room and people walking by. I just kept screaming how I was thrown away and nobody cared. It was easier for the doctors to just put me in bed because that’s what primary progressive MS does. You just progress and then you die. I’m sure I looked a sight, as I was ugly crying. I know that snot was running all down my face and most likely in to my mouth. I know, I know…TMI! This guy called me on my shit, no one does that!! And how did he know? How did he see my pain and how did he know I wanted to end my life? How did he know why I was really there?

Then, silence. I was breathing so fast and looking around the room. Some were crying, some just looking at me like they wanted to hug me. Someone handed me a lil’ box of tissues. Then his voice broke the silence. He said, “We’re going to make you happy again.” I looked at him like he was crazy. Didn’t he know, I have primary progressive multiple sclerosis, there is nothing he can do to help me or make me happy again. He smiled and said he’d be back. A few minutes later a woman entered the room. She was the psychiatrist on call. She looked at me and said, “You never sleep, do you?” I looked at her and said, “No.” She looked at my file saw that I was on Effexor and explained she would leave me on that, but she was going to add something else. Something that would, help me sleep and make me happy again. I looked at her like she was crazy too. I didn’t think they understood what they were dealing with. Dr. Muscles [I’m trying to find his real name] came back in the room to see how I was doing after my meltdown. I just looked at him and said, “Thank you.”

The next doctor he sent my way, changed my life!

Part 3 tomorrow. Sorry if my writing is not perfect. I never said I was a writer. LOL

Have Courage and Be Kind