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Holy elephants Batman, which way is up

Right now it is 2:45 PM on Thursday. I just woke the hell up. I guess it’s better than yesterday when I woke up at 3:30 PM. I went to bed at reasonable hours both nights but my body just does not want to wake up. Maybe it’s because I know what it’s waking up to.  Maybe after all this time I’m just sick and tired of dealing with it. I’m just not quite sure why it all is hitting me so hard right now, but it’s  it’s as if the light at the end of my tunnel is a locomotive coming right at me. I’ve been searching my mind as to why everything is hitting me so badly and I cannot figure it out. Nothing has really changed in the last 4.8 years of being completely bedbound, fuck it the last 5 years ( yes I am rounding up ) to make me feel so lost right now. Or maybe that is the problem, that nothing has changed. I am a grown ass woman who has never been afraid to speak my mind, tell it like it is,  or go toe to toe with someone who is a complete dickwad. 😈 But, this piece of shit MonSter that is MS is a different kind of enemy.  It is very sneaky and it takes away from your soul not just your body. It not only affects the recipient it affects everyone around them that loves them.

 I really am trying to find that blessing. It just seems so out of reach. I know everyone says that I’m lucky because I have the gift of life. And believe me I completely understand that. But is living in a bed every day, every night, every week, every month, really living?  I don’t think that people understand that this part of my journey is not going to change.  I can’t do any of the treatments so I’m as will continue doing what it does and it will continue to progress. So what does somebody do with that? How do you find that blessing knowing that the help that is out there now for your disease, you are not allowed to do. So I think I just have to say fuck it  and be like cookie monster and when it’s unpleasant just eat the fucking cookie. A medicated cookie but you get the idea. 😉
 Tomorrow is my pain management appointment with Dr. Nasser. Once a month like clockwork. I have a list of things to ask and the way I’m feeling I’m pretty sure I’m going to end up being a little forceful when I ask. By forceful I mean I will probably be in tears begging for someone to help me. 😭  Yes, ugly tears. I’m already scared to death to go because I know how bad the pain is going to be when I’m lifted in that Hoyer lift and put in my wheelchair. Hell, just rolling me over to fix my clothes and get me in the lift sling is Is making me sick to my stomach. Fuck fuck fuck you multiple sclerosis!

A little bit of advice before I go… If you yourself have MS and are still able bodied, make a list of everything you want to do and do it now! Don’t put anything off because people with our illness we have no idea what the next day will bring. And if you’re Normie, a person with no afflictions, the same goes for you. Make a list and do the things you want to do now, because even though you don’t have an illness, shit can happen  in the blink of an eye. So do what you want to do now. Please  I beg of you, don’t put it off for another second.

 Have courage and be kind
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The prison that is my body

To literally and figuratively be trapped in your own body is tantamount to living in a horror movie. Horror movies are my genre and most days I feel like I’m staring in my very own movie. I wonder when I’ll get my star in Hollywood? 😜 That feeling of claustrophobia that feeling of been unable to move is a feeling no person should ever have to endure. Unfortunately many of us have to live this way every day of our lives. The Normies ( people without any type of illness ) go about their day in a bubble. I know, I was there once. While I was always a person to help others, by opening doors for someone in a wheelchair, by reaching things for people who couldn’t, or just to have a kind word for someone, the truth is  I never really saw the person.  I could feel for them and wish I could help them in other ways but I never quite understood just how it was living that way. Now that I am that person that needs help I realize just how much our country needs to wake up and give love instead of hate. I’ve had people push me aside in my manual wheelchair because they needed to get something and they couldn’t reach reach something with me in front of them. It didn’t matter that I was looking at something to purchase, all that mattered was I was in their way. I was a third class citizen that didn’t even need to be asked if I could please move for a second. Trust me that person never did that to anyone else ever again once I was through with them, but what if I had been someone that didn’t have a voice.

That’s the question in my mind every single day. How will I break free, or will I ever be able to. If I’m truly honest with myself I know that I will not get back what I have lost. I’m not saying that in a sad or depressing way, I’m saying it in a medically proven way. If only one doctor had said this to me I probably would’ve laughed at him, but it’s been  several doctors have said this to me. I know they’re not trying to discourage me or hurt me they’re trying to give me reality. They don’t want me to get my hopes up so they’re giving me statistics regarding people with my severity of the disease. With primary progressive multiple sclerosis you constantly progress. There is no remission there is no 10 minute break. 😉 There is no relapse that you will come out of and be OK. You just continue to get worse.  So now I’m trying to resign myself to the fact that my future, at this moment, isn’t very bright. As you noticed, I said at this moment. While I am a realist, I am also a dreamer. So I will continue to do my exercises, I will continue to fight this MonSter.  But I’m scared. Even those with MS will, I pray, never have to be trapped like this. The disease itself is horrific but the thought of spending the rest of my life trapped in this bed is  completely and utterly paralyzing. And I can say, with the upmost truth and honesty… I want to live, not just exist.

Have courage and be kind

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Fear!

I try to live my life minute by minute because anything else is overwhelming. I know that every living person wonders about their future and what it will bring. Unfortunately when you live with chronic illness that wonder many times turns into fear. Every night I go to bed knowing that when I wake in the morning nothing will be different and it may possibly be worse. 😢 I will still be trapped in this bed, I will still have pain, and I will still have sorrow.  But, I will still wake up and try to get through my day as best as I can.

I am human and I can’t stop thinking about what may happen. Statistically I know exactly what it’s going to happen to me. I have an aggressive form of primary progressive MS and it isn’t going to get better. I have now been bedridden for four years and eight months and it doesn’t look like it’s going to change anytime soon. Unfortunately, for me, rehab aggravated my back fracture that I never knew I had. With that has come so many problems. Whenever my hips are put into the proper aligned position the pain that comes with that seriously makes me not want to move at all or even try to  make it through the day. The pain has been going on for a few months now and it is taking over my life. The pain in my lower back is also  excruciating to the point where I can’t even sit up straight for a period of time without becoming nauseous. We discussed a facet block but I’m not sure even that will help with my lower hip pain. My husband needs a facet block but unfortunately our crappy insurance has denied it. Even though he’s had them before. So now we must fight the appeals process. I cannot do mine until he gets his done, so I think we’re both shit out of luck.

Again, I know everyone’s future is unsure.  Hell the minute we are born we start to die. But most people can look ahead in their future talk about wonderful vacations they may be going on family get together’s etc. I cannot do that because at any given time I may not feel well enough to do anything. Unless they can figure out something with my pain I really have no life to speak of. All my future has in it is this bed in this room surrounded by these four walls. When you’ve been bedridden for as long as I have been you can’t just get up get into a wheelchair and go about your day.

It’s an adventure trying to out to get me dressed, in the Hoyer lift, and then into my wheelchair. After that I’m already down for the count. Just doing that pretty much takes away all my spoons for the day. 🥄🥄.  And the pain comes with doing that is like Michelle Pfeiffer in the movie witches of Eastwick. 😳 It’s hitting me hard today because I had a shower  Saturday night,  two fucking nights ago and it completely wiped me out. The pain was worse than it’s ever been and the nausea was off the charts. So I’m trying to find something and some reason to keep holding on. How do you come to terms with the fact that your future may include you being always trapped in a body that doesn’t work and left in a bed?  Lately when I watch movies all I can do is cry.  I cried for what might’ve been and what should have been. I also try very hard to understand and live with my new ‘normal’. I’m not trying to get pity or be a Debbie downer, but sometimes this shit just really gets to me. I don’t understand what the fuck I did to deserve such an aggressive form of this disgusting disease. When I was diagnosed I had three babies under three and my life was torn apart.

Fuck you multiple sclerosis

I’m just so tired. Even Warriors fall apart at times. I’m just not sure how to put myself back together this time. It was just a fucking shower and my whole body feels like it just wants to curl up and die. And the doctors don’t listen. They don’t seem to care about my back fracture, they act like it’s not a big deal. It’s almost as if they feel like, hey she has multiple sclerosis she’s bedridden there’s nothing to do. The way the pain is affecting my life I may just have to do their morphine drops under the tongue. Sadly cannabis isn’t even helping me now. So what, they’re just gonna throw morphine under my tongue and leave me to die in a bed. The worst part is if I wasn’t stricken with multiple sclerosis they would be able to fix my knees, fix my hips, fix my back. But because of my disease it’s not worth it to anyone.  Regarding the back fracture, my God, maybe that’s the reason my legs completely stopped working in November 2013. Maybe it wasn’t the MS. But they have no answers for me about that. They basically just said possibly but there’s never any way to tell.  So now I am stuck wondering and really wondering what am I gonna do for my future.  Have no worries, I will get through this and I will continue to fight. Hell, I’m a fucking MS Warrior! 🖤

Have courage and be kind

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X-ray fun and crazy results

 I miss the good old days when I could just walk in jump up on the x-ray table lie back and let them rip.  The x-ray machine that is. When I called to make my appointment for x-rays I explained I needed a lift as I am unable to transfer on my own. They told me they don’t have a lift and they’re not required to have a lift. I explained that the ADA says  any medical building/facility should have  ADA compliant equipment. Not according to them at Renaissance imaging Center.  They said they could get four guys to lift me out of my chair and onto the table. 😳  Are you kidding me? Not only is it dangerous for the patient, me, but it’s dangerous for the people lifting me as well.  I wonder how many people have been dropped or how many of the medical personnel have hurt themselves dead lifting a patient.  Realizing they weren’t going to help me, they explained I would need to go to the hospital for my x-rays because they have a Hoyer lift. So after my doctors appointment on Monday we went to the antelope Valley Hospital to have my x-rays done.  Easy Peasy right? Not so much.

When I got to the radiology department I explained I would need a lift for x-rays. She said they didn’t have one and got me her supervisor. He comes out and  says, “aren’t you able to stand up and transfer to the table?” I calmly explained to him that I would love to be able to stand up and get on the table but unfortunately I can’t. He got a little nervous and apologized. Then he proceeds to tell me only inpatient clients can use the Hoyer lift. WTF!!  So basically because I’m disabled I can’t get the same care as someone who is not. So again I explained about ADA compliant hospitals and rolled away.  Within five minutes into our drive home I got a phone call telling me that they could use the Hoyer lift. Well no shit Sherlock! I figured they would fix their fuck up. 😏 We turned the van around and went directly back to the hospital.

 Once we got back, the tech came with the Hoyer lift and we went into the x-ray room. My wheelchair can recline in to a bed position, so I asked if we could possibly do them in my chair.   Renaissance imaging had told me no, but now these guys said yes they could. I proceeded to recline my chair to an almost flat position and she hooked me up to the Hoyer lift. So all she needed to do was lift me few inches so he could slide the film underneath my back. Easy enough. For those of us that have had a child, think contraction. 😮 That was the pain I was in when I was lifted. I let out a silent scream and had tears streaming down my face. The poor girl working the Hoyer lift and the x-ray tech felt awful and I explained to them, it’s not you it’s just my back. 😥 I let them know that what we were doing was going to help find out why am in so much pain, so it’s a good thing.  And thankfully after being lifted three times, he got great x-rays and  just like that, it was over.

Yesterday, Thursday, I had my pain management doctor appointment to discuss the x-rays. The doctor walked in and the following dialogue ensued:

Doctor: well aside from your fracture at L1 everything else looks pretty good.

Me: my fracture what, where? What? 😲

Doctor: you didn’t know your back has/had a fracture?

Me: um, no 😢

So now I’m getting an MRI. It has to be done to the hospital because of the pain it causes me so that they can sedate me for it. The minute he mentioned an MRI I started crying because I know how bad it’s going to hurt. (refer to x-ray appointment above) So that’s why they’re choosing the outpatient route. 

We are thinking it may have happened when I fell in November 2013 and everyone assumed it was the MS that stopped my legs from working. But we don’t know yet. The MRI will give us more of a timeline of the break. I’m trying to pinpoint any time in the last five years that could’ve caused trauma to my back. 🤔

And while physical therapy was awesome for me the reason the pain has been so intense since then is because it aggravated my already fractured back.  In my humble opinion. 😳 Ya think!? So I’m kind of in a daze right now and trying not to overthink anything because it’s making me crazy. I just have to be patient and hope the MRI will give me a clear picture of what’s going on in my back. 

But honestly, it’s all good. I’ve got this! ♥️

** for those that had to read some of this already on Facebook, I’m sorry.  😘

Have courage and be kind.

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Too Disabled…

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…

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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.