Author: Tracy

A day in the life of a mommy, wife, daughter, sister, aunt and friend with Primary Progressive Multiple Sclerosis!
Anger · Family · Fear · Health · HELL · Hope · Love · Medical · Multiple Sclerosis · PAIN · Primary Progressive MS · Ramblings · RANDOM · Strength

The Strength Inside – part II

Tracy7 Comments

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

 

Anger · Fear · FUCK · Health · Hope · Love · Multiple Sclerosis · PAIN · Primary Progressive MS · Ramblings · RANDOM · Strength

The Strength Inside – part I

Tracy5 Comments

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

Anger · Family · Fear · Movies · Ramblings

Completely Empty

Tracy1 Comment

  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 ✌

Anger · Craziness

Just lost my freaking mind…

Tracy5 Comments

 

This cat, Zoe. I rescued her from the pound eight years ago. I knew I wanted to get an older cat and not a kitten. Zoe was two years and old she had been returned twice. ( now I know why ) They handed her to me in my wheelchair and she immediately crawled up under my neck and started purring, she was the one. The second I got her home, and lifted her out of the box, she gave me one look, and ran off towards my daughters room. I pretty much have not seen her since. LOL

 So today she comes in my room and won’t even look at me. I’m calling her name she literally won’t even look at me. She has no idea that all she has to do is be friends with me and she’ll have EVERYTHING! 😊 I’m rattling some crinkle paper to play with her, she won’t even look at me. My husband calls to her she looks right over him, my other daughter comes in she goes right to her. What the fuck is wrong with this cat. LOL all the animals love me for god sake‘s! LOL ( A lot of LOL‘s ) because it’s funny  and I’m funny! 😂

 So, back to the story. After she ignored me for five minutes I looked at my hubby and started sobbing. He looked at me and said that it’s OK, she loves me she  is just hungry and wants one of them to feed her. That’s why she’s ignoring me. But it wasn’t even about the cat. #ItIsNotAboutTheCat We know that. I literally can’t stop crying right now.  It’s not like I even feel sad it’s just, I don’t fucking know what. I’ve been trying to be so positive and up beat and it’s actually killing me. Because I’m not happy!

But everybody wants you to find the good and to always be happy. And, as usual, I’m doing everything  everybody else wants me to do.

 Why can’t we be sad sometimes. Why is it so hard to just let others vent. Sometimes when we lash out or vent what’s hurting us we don’t expect you to come up with an answer. We just want to feel like somebody cares, give us a hug, a kind word. Personally people that are always shiny happy upbeat make me really fucking nervous. You know they’ve  got secrets and stories they’re hiding.  And if you say they don’t, you’re really naïve. But OK, I’ll go back to make everybody else happy. Isn’t that what everybody wants?

Peace ✌️

Craziness

What a feeling!

Tracy2 Comments

 That feeling of comfort… That feeling of no pain…

It’s been so long. But I found a spot, even if only for a moment, there was no pain.  It could be the adjustable bed, it could be the medicinal meds. ✌️  Whatever it is, it is AH-mazing!!!  I can’t lay on my side or move that much, so for the last four years I’ve literally been on my back. (minds out of the gutter) and now as I am  talking this blog in to my phone, I’m starting to feel a little bit of pain. It’s mainly the butt bone!! 🤪 If my butt had a voice it would probably tell me to get the fuck off of it!

 So I’m watching ‘Grace and Frankie’, season four. It’s freaking funny as shit!  And yes that is how my mind works, it flies from one thing to another. I can’t keep up with it most days. That’s probably why I do not sleep easily. My mind goes from 0 to 60 in about a fraction of a second.

 So, hey, I just adjusted my bed and now the pain is gone again… Hooray!  And now I have one dog sleeping between my legs under the covers and my adorable little pit mix, who is as sweet as the day is long, lying next to me.

^^^ And this is what happens when I am bored, unsupervised, and highly medicated.  Snapchat pictures with filters. Does it get more boring than that??!! You have to admit they are fun and they make you look adorable. So why the fuck not.

Peace ✌️

 

 

 

 

Anger · Family · FUCK · Health · HELL · Hope · Multiple Sclerosis · Primary Progressive MS · Ramblings · RANDOM · Sarcasm · Strength · Stupid Stuff

Happy New Year 2018

Tracy2 Comments

65041E5D-1C67-4A85-B6A7-06D09B848B18

 I guess it’s better late than never. 2018… The only change for me will be that I will progress. I’m a realist, I have to be. I still hope every day. Yet, hope can become very paralyzing.  As most people now, I was diagnosed in August 1997. My second opinion specialist said it began in 1986 and that I am primary progressive. In reality I’ve had this my whole life. I was genetically predisposed for it. I can look back and see issues I had from the time I was little and through my teen years into adulthood. It lay dormant for a very long time. I guess when it showed up, it needed to make itself known by literally taking away everything I held/hold dear.

But, seriously, what you gonna do? I literally can’t “do” anything by myself.  I try to keep A happy face because nobody wants to hear the truth. And that’s OK, I probably wouldn’t want to hear it either. So really, what are you gonna do when you end up like this. Basically you just have to take it. I cry so much I could end the drought. 😂  No, seriously, I could. LOL You just have to find the humor.

It’s just that some days there is no humor to be found. It’s been four years and three months now that I have been confined to a bed. I get up for doctors appointments and for showers and that’s about it. The pain is so intense that if I sit for too long… I’m better off in bed.

That’s all I have right now. Happy fucking new year! I’ve just got nothing.

Peace ✌️

 

 

Anger · Health · Primary Progressive MS · Ramblings

When?

Tracy9 Comments

 Primary progressive multiple sclerosis, end stage. There is no medication for it, there is no remission, there is no cure. So when do you say enough?

 I lie in my bed 24 hours a day seven days a week. When I do get into my wheelchair the pain is so bad I can’t sit for more than 30 minutes to an hour. So I don’t get it my wheelchair. Even lying in my bed I have pain constantly.

 I no longer have the caregiver as I cannot afford one. Hospice won’t even take me. They don’t consider what I have terminal. I guess it’s OK that I live another 20 years lying in a bed in constant pain. If that’s not terminal  I don’t know what is.  Fuck you hospice!

 Dr. Kevorkian  knew what my type of illness did to a person. He helped them die with dignity before they became so bad that they could do nothing for themselves.  I’m already there I can literally do nothing for myself. Except talk text and look at my phone and use a remote control to watch endless hours of television until my brain goes numb.

 I have a hard time holding utensils now. But I guess it’s OK if I just become a head in a bed that is in constant pain. People say tomorrow’s another day.  Not for me, tomorrow is the same thing, every day for the rest of my life.

 The new so-called medication for progressive MS is a big farce. Maybe it will help secondary progressive but that’s not even in the same league as primary progressive. Ocrevus, The manufacturer, when I called them basically told me I’m too far gone. On the disability scale I’m an 8.2. So I can’t take the medication. But they don’t really give you a reason why.

 I’m not looking for pity I’m not looking for any ones I’m sorry’s, I’m bringing about awareness to a disease that is looked at as a basic, oh well you have MS, disease.  It’s not basic it’s like living in hell.

I’m off, as I can barely talk without crying anymore. I just want to  have some control over my own life and not die a rotting shell of the person I once was.

Fear · HELL · Multiple Sclerosis · PAIN · Ramblings · RANDOM

Already dead

Tracy2 Comments

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

IMG_5913

Health · Hope · Medical · Multiple Sclerosis · Primary Progressive MS

Possible Multiple Sclerosis Breakthrough…Not

TracyLeave a comment

 Update: this is why I don’t get my hopes up. Just found out this is another media hype or as I like to call it a hoax. It’s very sad playing with us like this.

————–

I won’t hold my breath, but please make it so!

Always hoping

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Breakthrough in multiple sclerosis research as scientists discover possible cause of the disease

 Scientists found a protein called Rab32 in the brains of people with MS

Telegraph Reporters

24 April 2017 • 12:01am

British scientists have discovered a potential cause for multiple sclerosis, in a major breakthrough that could pave the way for new treatments for the disease.

Scientists have found a new cellular mechanism which may cause the autoimmune disorder. Multiple sclerosis affects around 2.5 million people around the world.

Typically, people are diagnosed in their 20s and 30s, and it is more common in women than men.

Although the cause has so far been a mystery, the disease causes the body’s own immune system to attack myelin – the fatty “sheaths” which protect nerves in the brain and spinal cord.

This leads to brain damage, a reduction in blood supply and oxygen and the formation of lesions in the body.

Our exciting new findings have uncovered a new avenue for researchers to explore. It is a critical step, and in time, we hope it might lead to effective new treatments for MSProfessor Paul Eggleton

Symptoms can be wide-ranging, and can include muscle spasms, mobility problems, pain, fatigue, and problems with speech.

Scientists have long suspected that mitochondria, the energy-creating “powerhouse” of the cell, plays a link in causing multiple sclerosis.

Using human brain tissue samples, researchers at the Universities of Exeter and Alberta found a protein called Rab32 is present in large quantities in the brains of people with MS – but is virtually absent in healthy brain cells.

Where Rab32 is present, the team discovered that a part of the cell which stores calcium gets too close to the mitochondria.

The resulting miscommunication with the calcium supply triggers the mitochondria to misbehave, ultimately causing toxicity for brain cells in people with MS.

Researchers do not yet know what causes an unwelcome influx of Rab32 but they believe the defect could originate at the base of the celThe finding will enable scientists to search for effective treatments that target Rab32 and embark on determining whether there are other proteins which could pay a role in triggering MS.

Professor Paul Eggleton, of the University of Exeter Medical School, said: “Multiple sclerosis can have a devastating impact on people’s lives, affecting mobility, speech, mental ability and more.

“So far, all medicine can offer is treatment and therapy for the symptoms – as we do not yet know the precise causes, research has been limited.

“Our exciting new findings have uncovered a new avenue for researchers to explore. It is a critical step, and in time, we hope it might lead to effective new treatments for MS.

The research has been published as part of MS Awareness Week. Dr David Schley, from the MS Society, said: “No-one knows for sure why people develop MS and we welcome any research that increases our understanding of how to stop it.

“There are currently no treatments available for many of the more than 100,000 people in the UK who live with this challenging and unpredictable condition.

“We want people with MS to have a range of treatments to choose from, and be able to get the right treatment at the right time.”

Trish Deykin, who suffers from MS, welcomed the research.

She said: “Finding a cause will help everyone who has MS – even if that’s just knowing more about what’s going on in their own brains.”

The paper, Rab32 connects ER stress to mitochondrial defects in multiple sclerosis, is published in the journal Neuroinflammation.