Category: Health

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

DMD – Disease Modifying Drugs

Tracy7 Comments

When I was first diagnosed in August 1997, there were only three DMDs available; the ABC drugs – Avonex, Betaseron, Copaxone. Being primary progressive none of the medications were actually for me, but we tried Avonex hoping to slow the progression. Alas, it did not work. Then when Rebif came out, we tried that. Nope, nada, nil. Finally when Tysabri came out I got on that immediately and it seemed to be working. Unfortunately it was not nice to my liver and I had to stop taking it. 😪

What I want people to understand is that these medications are there to hopefully slow and/or stop the progression. They will not repair your myelin, they will not make you walk again. People do notice a placebo effect and think that because they’re on the medication that’s why they are walking again etc.. While that is awesome, it’s also not the case.  What these medications do is, hopefully, suppress our over active immune systems and halt the progression. So any improvement, is all YOU and your awesome strength fighting the MonSter that is MS! 💪🏻

msdamage

As you can see from the picture above our immune system eats away at the Myelin thinking that it’s bad and in its own way protecting us.  If all goes well with the DMD will stop that from happening. At this time there is no other way except for these medications too slow and/or stop the progression of the disease.

HSCT – Hematopoietic Stem Cell Transplantation, is looking very promising. I’m hoping at some point it will be available for all of the types of MS. To follow the Journey of another amazing MS Warrior, check out this blog, Making Sense Of M.S.

I am now in the process of discussing two medications with my neurologist, Ocrevus and Lemtrada. I have to be very careful because of the fact they suppress the immune system. Because of my urostomy, as I’ve mentioned before, I have constant bladder infections. So when these medications suppress my immune system it puts me at a very high risk of sepsis. So, I’m not taking any of this lightly, but I really want my progression to slow and if possible stop. If I find something bad is starting to happen then I will stop the medication, but I’m very hopeful that one of these will work. For me the benefits outweigh the risks.

I see all the time how people are going ‘med free’ and that scares me. I fully believe in a good healthy lifestyle [diet] exercise and all the that goes with that, but that will not change the progression of your disease. I hear people say that they’re out of their wheelchair[s] now etc. following this diet or that diet. And that’s awesome, but what’s happening is they’re [most likely] in remission, but the disease is still in the background doing its thing.  If you’re choosing this route, just please be careful. Make sure you get your MRIs when needed and keep your doctor in the loop. Better to be safe than sorry.

I cannot wait for the day when I read, we have found a cure for MS! I just pray it happens in my lifetime!

Until then, this is what I think of MS;

pissonms

Have Courage and be kind! ♥️

Anger · Health · Multiple Sclerosis · Primary Progressive MS · Ramblings · Strength · Stupid Stuff

Fighting through…

Tracy5 Comments

I’ve been trying to figure out a way how to approach leaving the rehab facility and continuing on at home. Sad to say, the ball was dropped once I left. I truly feel like I was just a body to fill a bed. Since being home, (March 23) I’ve had exactly four in-home physical therapy sessions. I’ve seen the pain management/rehab doctor twice and was told I would have more rehab appointments. No one has called to set those up, and when I call, I never get a return call.  So I am taking the bull by the horns, so to speak, by bustin’ my own ass at home. I wear my Velcro arm weights and do arm exercises daily. I’m doing my best to strengthen my core. And when my husband feels like it, he helps move my legs around for me.

Right now I’m dealing with another wonderful bacterial infection in my bladder and kidneys. Because of the bowel section they used to build my urostomy there’s always a little bacteria that ends up in my bladder. I’m not gonna lie, I think it’s stupid AF that they use part of the bowel knowing it has bacteria and can cause problems. I’m not sure why they didn’t choose another way to build the urostomy. hmmmm I was told by having the urostomy done it would stop my infections etc. Well slap me silly and call me stupid, but it’s made it worse. I have to take a daily antibiotic, Nitrofurantoin, twice daily every day for the rest of my life. Last year I had bladder stones and kidney stones which were all surgically removed. When my urologist went through my stoma with a camera it was like looking at rocky beach inside my bladder. She said she’d never seen so many bladder stones. The removal of those wasn’t that hard. A tube was inserted through the stoma and they were vacuumed out. The kidney stones were a whole nother story. I went in for an outpatient procedure to place the tube into my left kidney which would stay there for five days and then they would vacuum those out. I ended up staying in the hospital for five days. Then when they went in to take out the kidney stones, they could not remove all of them so the tube had to stay in my back for another five days. Unfortunately it caused me a lot of problems and constantly leaked, so for the five days I had to be put into a nursing Center. When I finally had the procedure to remove the kidney stones, all was well. But alas, I have more bladder stones and kidney stones yet again. So what, do I have to have surgery every year to remove these? I feel like I get two steps forward and I’m thrown four or 10 steps back.

unhappy
I know my newest bacterial infection is due, yet again, to the wonderful piece of bowel in my urostomy. Then of course, since things don’t always go as planned, Walgreens where I get my prescriptions fucked up. LOL my prescription for Augmentin was called in on Friday. On Monday I called Walgreens as it seemed to be taking quite some time. They said they were out of stock and would be getting it in the next day on the shipment. So I called the next day and was told they weren’t getting any at all. That my doctor wanted the name brand and they do not carry the name brand. They said they would call my doctor and see if I can use the generic! Okay… why the fuck didn’t they do that in the first place and call me. Meanwhile I’m feeling awful! I went to the doctor because I knew my fatigue and sheer feeling like I was dying was not due to my MS. Not everything is MS!! So I kind of needed this medication right away. I was curious as to why no one called to let me know this. And of course dead air on the other end of the phone. To make a long story short, I finally had enough and yesterday, Wednesday, I called Rite Aid and they called Walgreens and within an hour I had my medication. We have used Walgreens for forever, but since the main pharmacist left a little over a year ago the service has been crap. So now, buh-bye Walgreens!

I will say that my new outlook, trying to keep the positivity floating, helped me through the situation. I didn’t lose my shit, too much. I just chalked it up as another little bump in the road that I would get through. I really believe it helped me to not feel worse by causing me added amount of stress. I will always find a way to make it through the rain. We must remain strong in times of trouble. We must have courage to keep fighting! Those are the markings of the true warrior!

strenght4

Always remember to have courage and be kind!

Happiness · Health · Hope · Medical · PAIN · Quotes · Ramblings · RANDOM · Sarcasm · Silly · Strength

Positivity…

Tracy12 Comments

This whole positive, optimistic thing is really new to me. I grew up in a somewhat negative family. Don’t get me wrong, there was a lot of love, but also negativity. These type of behaviors are learned. When you’re around negative forces it rubs off on your psyche. Now there were happy, positive times for sure, but looking back a lot of negative as well. And it was ‘taught’ in previous generations. It didn’t just start in my family, and it took me 53 years to realize this. The realization came while I was in rehab. The positivity train that that took over during that time made me re-evaluate a lot of of my life.

Again, there were a lot of positive things in my life. Unfortunately, negativity always took over many of the positive aspects. The issue I am running in to now is others in my life aren’t in the same place I am. I’ve also realized that the so called positive people in my life, truly were not all the positive. They preached positivity, but honestly didn’t live it. I have had to rid myself of many toxic things and/or people as of late. And while it is sometimes sad, I am actually okay with it. I finally understand the concept of, you have to take care of yourself first, or you cannot help anyone else.

I have found myself more than once falling back into that angry negative place. When that happens, I pause, take a breath and move on. I just give myself a little space from the negative forces that be. It’s been a very hard journey to get where I am at today. I will not let anyone take away my new outlook. Sadly, I feel like there are a few out there trying to do just that. Like I said, they’re still in that not so good place. I truly hope they can find their way out of it, but either way I will not go back.

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We truly are in charge of our own happiness no matter the hardships in our life. Believe me, it would be very easy for me to just lie down and die. And, I almost did just that. I will not go back there and I will not let anyone steal my happiness. I will not let anyone takeaway my new positive, optimistic, and determined heart. I have worked too hard in the last two months to get to this place. I also will not apologize for it.

Just a small glimpse in to the life that is me. I will get back to the journey that got me here… eventually. I hope those of you following/reading my blog are living your life to it’s fullest potential. We ALL deserve to be happy, no matter the circumstance.

Have Courage and Be Kind

 

Anger · Family · Fear · FUCK · Happiness · Health · Hope · Medical · Multiple Sclerosis · PAIN · Primary Progressive MS · Quotes · Ramblings · RANDOM · Sarcasm · Strength

Being Defeated is NOT an Option!

Tracy4 Comments

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!

Craziness · Family · Fear · FUCK · Happiness · Health · Hope · Love · Medical · Multiple Sclerosis · Primary Progressive MS · Ramblings · RANDOM · Sarcasm · Silly · Strength

Must re-charge…

Tracy2 Comments

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

f38a920c-2d19-4c5f-8dae-e3544f30e834.jpeg

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! ♥️

Craziness · Fear · Health · Hope · Love · Medical · PAIN · Primary Progressive MS · Quotes · Ramblings · RANDOM

The Strength Inside – part IV

Tracy4 Comments

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

Animal Rescue · Family · Happiness · Health · Hope · Love · Ramblings · Silly · Strength

My Angel in Heaven – Carolyn B. Baker

Tracy8 Comments

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.

Craziness · Family · Fear · Happiness · Health · HELL · Hope · Love · Medical · Multiple Sclerosis · PAIN · Primary Progressive MS · Ramblings · RANDOM · Strength

The Strength Inside – part III

Tracy7 Comments

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.
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