If only we knew when the darkness would end… Have courage and be kind
If only we knew when the darkness would end… Have courage and be kind
Well those are not the words that were used, but that’s exactly what was meant. I’m too disabled for the DMD’s. That unfortunately in my current situation I am more susceptible to the side effects. Because of my bedridden status my body is at higher-risk of infection. With my constant bladder infections it could easily lead to sepsis. Because of the cancer that runs in my family I’m more apt to the cancer side effect of Ocrevus. And, in a nutshell, it’s not really meant for the primary progressive form of multiple sclerosis. I hate being right. I knew that the big hype that this was the first medication for the progressive forms would not mean primary progressive. If I want to be on the medication they will classify me as secondary progressive… and that’s not happening. I’m numb right now and I’m trying to come to terms with this. I’m angry too. There are people out there going med free thinking that they’re beating the monster that is MS. In the background MS is still progressing and doing its MS thing. I’m scared for them because when the relapse hits, and it will hit, it will be too late for them. They are blessed to be able to be on one of the many medications out there now, and they’re not doing it. I understand it’s a personal choice, I get that. But MS is not stopping because they’re eating right and exercising. That’s not going to slow or stop the progression. That’s not opinion, that is fact! I’m angry because I want to be on one of the medications and I am not able to take one. And for me the side effects aren’t nearly as awful as the MS. I’ve had to be med free, I’ve done the good healthy eating, I do the exercise as much as I can, and I still progressed to being bedridden. I’ll trade anyone of you people to be on those medications. Do you want to trade your MS for mine? Yeah I didn’t think so.
Before anyone says get a second opinion, this is the second neurologist opinion. He did say to keep doing what I’m doing regarding exercise and eating properly. But he also explained that I shouldn’t get my hopes up because I probably will not get back the use of my legs to transfer etc.. The good thing is with exercising I’m getting what’s called muscle memory. That’s pretty awesome because it’s much better than atrophy. But it really is kind of a second gut punch to me. I know in my intelligent brain that I can’t really get back everything I’ve lost, but in my hopeful mind I wanted to believe I could. So I will keep exercising the best I can and continue on. I have to, there is no other option. I will not fall back into my negative mind. I will keep my new positive outlook going and fight through this as I have fought through everything for the last two decades.
The main thing I have to do now is to let go of the what ifs. What if I had gotten into a physical therapy straightaway when I fell November 2013? What if my doctors had been more proactive with me? I can’t go back and change any of it and I need to let it go. I need to move on from here and continue doing what I’m doing.
On in a bit of a positive note I did finally get my x-rays done. That fiasco is for another blog. LOL I’m hopeful this will give them some more information in combating my pain. Right now that’s my focus. If we can figure out what’s causing my pain and get it under control I may be able to be in my wheelchair more. So that will be my next journey, the journey for pain relief.
If you’re able, go out and seize the day, because you never know what tomorrow will bring.
Have courage and be kind…
I went to the doctor last Thursday. After the doctor we went to Walgreens to pick up my prescriptions and then we went to get something to eat. I’m still exhausted from that day. I’ve had two in home physical therapy appointments and the pain is intense. Nevertheless, I got through them both. On the days where I feel like I just can’t go on, I just want to stop everything. I ask myself why I’m doing this as I know it’s going to hurt. I start to second-guess myself. I truly am my own worst enemy!
So, instead of quitting, I push on. I remember why I’m doing this, and that makes me focus.
Just had a surprise shower after PT day 2. [not my normal shower day] I am back in my bed resting and re-charging for tomorrow!! Peace out … for now!
Have Courage and Be Kind
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’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.
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.