Archive for the ‘Fear’ Category

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! ♥️

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.

Hurting my ears

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

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.

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

 

I truly believed that my life was only my MS. I was no longer Tracy, my new name was MS. For years I was told that with my type, Primary Progressive, that there was nothing I could do. I would slowly progress and there was nothing that would stop it. For some reason I actually believed the people that told me that, hell they were doctors. Basically, I gave up. On January 30th, someone I loved very much, passed away. I don’t remember much after that until February 16th when I came to a crossroads. During those 2 weeks I lost the use of my left arm, and most of my right. I had told my family that when my arms went, I’m going too. So on that night, with the only hand that was working, I opened a bottle of my pills, and was ready to go be with my beautiful friend, Carolyn Baker. Then something amazing happened. You see normally my dogs sleep with me. That evening none were in my room. At the moment the bottle touched my lips my beautiful girl, Soloh, jumped on the bed came to me and snuggled. I could hear Carolyn’s voice telling me to STOP, that I’m strong, and to get the HELL up and get some damn help!! I knew it was Carolyn that sent Soloh to me at that moment. She loved my lil’ PitMix. I looked up, and smiled through tears, and put the top back on the bottle and set them down, and said ‘ok, girl…I hear you’! I called to my husband to take me to the hospital. He said we could wait until the next day. (Note: My MS has tried to break my family. There is much anger because of it.) At the time, my urine was very very dark almost black. I knew I had an infection for at least 3 weeks by then. So that’s why my husband thought I wanted to go to the hospital. I didn’t fill him in on the real reason…yet. I told him, “okay” and I found an ambulance that took our insurance, and called. About 5 minutes later there was a knock on the door and my husband came in and asked me if I called an ambulance. I laughed and said, “yes”. He smiled and let them in…

survive

In this moment, my life has been changed forever…

My arms are getting tired, part 2 will be up tomorrow. Please stayed tuned. And, miracles really do happen.

Have Courage, and Be Kind

  I’m not even sure how to explain it. And I truly am sad most days, but today as I opened my eyes I felt nothing. Completely void. I was alone for about an hour and realized I didn’t have any water. I forgot to ask for some before my son left for work. And over that small little thing, I just sat there, emotionless with tears running down my face.

 Only emotion I feel lately is anger. Anger because we cannot afford for me to have in-home care. My insurance company, one of the big ones, doesn’t cover that. And God forbid my husband‘s company pays him what he’s worth.  He’s given near 20 years for that company. He’s trained more people there than anyone and never got paid for that. And all the while he did his own work as well.  And the people he trained. now make much more money than he does. I guess because where he works most people are familied in. Yet my husband has more letters of recommendation and more people that will only work with him than anyone else. He gets calls at home from people for help. But this multi million dollar company can’t pay him enough for all his dedication and hard work.

And yes my husband has taken time off, for me to help me. He uses his vacation time and sick pay he’s never taken off the company without using his own hours. Everyone else is constantly on vacation. But that’s what the higher ups do in my husband’s company they go on vacation and leave the work to the real people who know what their doing. And then someone had the nerve to mention my husband taking time off. Again he uses his sick and his vacation pay so it doesn’t come out of the fucking company.  And I pay attention, his colleagues take vacations all the time. But they actually get to take vacations my husband’s “vacations” are usually spent with me in the hospital.

 My husband is a good man and the best at the job he does. Like I said it’s not just coming from me it’s coming from stacks of letters I have at home that people have sent him. And I did work with him years ago and many times people called they would only work with him.

 If anyone reads this that works with him, cut him some slack. I wrote this only me. Because for 20 years I’ve watched my husband works his ass off but because he’s not an “ass kisser”  and honestly that’s what most of those people want. And I’m glad he’s not, that’s one of the things I love about him.

 Emptiness, really sucks. You see I can’t get excited about things because I have no way to get up to do the things that might excite me. My family does what they can when they’re not at work. I can honestly say I really need a caregiver.  Maybe if I divorced my husband and go on government care that will help me.  And the sickest part of that, is people actually have to do that. We are not the richest country in the world. Our system is completely  fucked!

 Now I’m off to watch some more brain cell killing TV.  And that is my life.

Peace ✌

Already dead

Because I’m already dead
You can see it in my eyes
I’m already dead
I can tell no more lies

My body is broken
my pain is so real
I can’t hold on anymore
My body won’t heal

Because i’m already dead
Can’t you see it in my eyes
I’m already dead
there are no more lies

The truth has come out
Please take me home
There’s no more to be done
My soul it is gone

Because I’m already dead
I will never be free
I’m already dead
Someone please help me

Song/Lyrics @ Tracy Radford

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