health · multiple sclerosis · Ramblings

It’s OK to tell your truth

The more I think about what this picture says, the more it’s true. Everyone tells me that you’re so strong you’ll get through this, blah blah blah. What if I’m not that strong. This disease has broken me. And please I don’t want to hear you’ve got to find the positives… I do, I find the positives every day but I can still be broken. And that’s not something to be ashamed of. I’m 55 years old and I am unable to roll over in my bed on my own. I mean really, let that sink in. I’m like a newborn baby. So while I am strong, I’m not made of stone. 

I do feel defeated. And again that doesn’t make me weak! I deal with some things that would break other people. So I get kind of upset when people act like I’m being depressing or I’m acting sad. Yes there are days when it happens. And if that bothers anyone, you know exactly what you can do. 

Last night for the first time in 10 months I had to take a Xanax. I was so ashamed and disappointed in myself. And then I realized that sometimes we have to do what we have to and the medications are there for a reason. And thanks to a wonderful friend of mine, I don’t feel bad about it. When I started trying to pull my hair out I knew it was time. I could feel every lump in my bed. I had to rip my shirt off of me because I felt like I was being strangled. And you have no idea how hard it was. I cannot dress myself, yes read that again I cannot dress myself. So getting my shirt off was a literal fight to the death. Tracy – 1,  T-shirt – 0!!

When I say I am bedridden, I mean that in every sense of the word. I cannot just get up and get into my wheelchair. I need a person and a Hoyer lift. I cannot scratch my foot if it itches. I cannot cross my legs, I can’t move even 5 inches one way or the other on my bed because I cannot move my body by myself. My legs can not hold my body at all if I were to try I would fall directly to the floor. When I start to slide down my bed I can’t pull myself up, my son has to help me with that. What I wouldn’t give to be able to transfer and get in my chair on my own. I would never be in this bed that was a possibility.

When people say, I have MS but it doesn’t have me… I’m sorry but bullshit. The way I feel is, I have MS, and it has me, but I will never give up or give in until my last breath.

I’ve been in a really weird place since my fight with my own body last night. I’m not losing hope, but it something that I’m going to have to think about deal with and move on from. I know it will happen again because it’s not the first time it’s happened. OK I’ll be completely honest, it happens every fucking night but usually cannabis takes care of it.

Please I don’t want the, I’m sorry Tracys or anything like that. I’m just trying to show that MS is not just some little disease. It’s not, just MS.

I really want to spit nails when I see people getting angry because someone tells them they don’t look sick. Trust me be very glad they say that. Because I look sick and it’s obvious that there is something wrong now. Back in the day when someone would tell me that I didn’t look sick, I would look at them and say, you’re right I kick ass because I’m an MS warrior!!  So stop getting mad and let them know what a badass you are!

I’m just tired… October will be six years I’ve been trapped in this bed. I’m really trying to not let that happen, but I have become a realist and while I’m trying and working really hard to get out of this bed, it’s probably gonna take a little longer than that.  And quite frankly, I truly believe I’m going to little mad. I am in prison. The prison, that is my own body and my bedrooms four walls.

And this month on August 19 is the 22nd anniversary of my diagnosis. Oh joy…

As always, have courage and be kind!

 

Christmas · Depression · Fear · FUCK · FUNNY · Holiday · hope · lonliness · mindless-thoughts · multiple sclerosis · primary progressive MS · Ramblings · RANDOM · sarcasm · silly

All I hear is blah blah blah… I’m a dirty tramp

I can’t help it, I love that movie and that part of the movie. One of my favorite movie lines! #MrDeeds

My blog title has nothing to do with how I’m feeling though. Living with so much uncertainty in life sucks!  I’m always waiting for that other proverbial  shoe to drop.  I ask myself every day why do I even bother getting up in the morning err waking up because I don’t really get up at all. 🤔

Most people have something to look forward to they can make future plans. I don’t have that option. I have no way to a slow or stop my progression of my MS so I really do wonder why I bother.  But, I will wake up every morning and lie this bed and figure out a way to get through each day lying in this bed. I think I need to invest in a good mattress LMAO but that won’t happen until pigs fly out of my ass. 😂🤣 Good mattresses are too fucking expensive. What a rip off.

That is all for now… I know you’re happy about that. Remember, have courage and be kind!

Circa: a long time ago in a far off land…
Depression · Fear · hope · HORROR · lonliness · multiple sclerosis · primary progressive MS · Quotes · Ramblings · RANDOM · sadness · sarcasm · strength · stupid_stuff

It really is OK!

I haven’t slept all that well for the past couple of days. Might have something to do with my 1 PM wake up call yesterday and the very strange sleep that went along with it. 🤔 I’m not OK. It’s not that anything is wrong, it’s just that the reality of my life sets in every once in a while and grabs a hold. Small things, like watching a movie and someone rolls over in their bed and cuddles their pillow, causes tears to fall from my eyes. Oh how I wish I could roll over on my own and cuddle my pillow! ☁️ (I know it’s a cloud I couldn’t find a pillow, LOL)

The funk that I’m in is bound to pass soon. I just get so frustrated being trapped 24/7/365. Lately I’ve been very angry at myself for becoming depressed. My new positive outlook is making everyone so happy that I feel like I can’t have a bad day. 🤷🏻‍♀️ I have to remind myself that I am human. I have to remind myself that my situation is pretty fucked up. But, I also have to remind myself that I will get through it. It is kind of funny to my twisted mind that I’m worried about upsetting people if I get upset so I’m trying to say happy so that everybody else is happy so that no one is upset. Wrap your mind around that one. 🤭

As I am sitting here, watching a horror movie trying to write this blog, the theme from the ‘Banana Splits’ show is going through my head.

The banana splits TV theme song:

Tra la la, la la la la.
Tra la la, la la la la.
Tra la la, la la la la.
Tra la la, la la la la.

One banana, two banana, three banana, four.
Four bananas make a bunch and so do many more.
Over hill and highway the banana buggies go
Comin’ on to bring you The Banana Splits Show.

Makin up a mess of fun
Makin up a mess of fun
Lot’s of fun for everyone.

Tra la la, la la la la.
Tra la la, la la la la.
Tra la la, la la la la.
Tra la la, la la la la.

Four banana, three banana, two banana, one.
All bananas playing in the bright warm sun.
Flippin like a pancake, poppin like a cork
Fleagle, Bingo, Drooper and Snork.

Tra la la, la la la la.
Tra la la, la la la la.
Tra la la, la la lad la.
Tra la la, la la la la.

And that my friends… Is how my mind works. 😜

Have courage and be kind!

anger · confession · Craziness · Darkness · Depression · Fear · FUCK · health · HELL · hope · joy · lonliness · multiple sclerosis · Pain · primary progressive MS · Quotes · Ramblings · RANDOM · sadness · sarcasm · silly · strength

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
Depression · Fear · FUCK · health · healthcare · HELL · hope · medical · multiple sclerosis · Pain · primary progressive MS · Quotes · Ramblings · RANDOM · strength

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.

Animals · boredom · confession · Depression · FUNNY · health · health insurance · hope · medical · mindless-thoughts · multiple sclerosis · primary progressive MS · Ramblings · strength · stupid_stuff · Wheelchair

Some days…

Seriously, some days I wonder why the hell I even bother waking up. No, I don’t mean the alternative. It just gets harder and harder it seems, to be trapped in this bed. Three months ago I was at the point where I didn’t care anymore. I kept my self medicated so I didn’t have to think about being in this prison. But then, I got help. My mind set changed and I saw that there was some hope left.  In a perfect world I would’ve been able to remain there until I could actually get up on my own. And no, I don’t mean up being a dancing fool, just able to transfer myself from my bed to my wheelchair.  In this world, insurance would have none of that. 😳

So I’ve been lying here for the last two days, angry and a little bit lost. It seems that since I had a glimpse of what might happen, I am not handling being trapped very well anymore. Hell, without the help I need, nothing is going to change. I feel like I’m fooling myself in a sense when I say that I can do this on my own. I want to keep that positive facade going so everyone thinks everything’s great… but it’s not. And no, I’m not giving up, but I am looking for alternatives. 🤔

I’ve been mindlessly watching movies for the last two days. Anything to keep my mind off of everything that I cannot do anymore. As I’m watching I constantly wiggle my butt 😏 move my arms 💪🏻 and try and strengthen myself. But in all honesty, that’s not going to change very much for me.  Right now while I’m talk typing, I’m wiggling my hips back-and-forth. Just keep moving is my new motto, and moving is what I will keep doing as much as I can. If only my dogs 🐶 had opposable thumbs and could understand me and be able to talk  and be strong enough to lift me up, everything would be aces. 😂  It could happen.

Okay, back to the real world. I think the worst part for me is that in my mind I can see myself moving my legs enough to be able to get transferred to my wheelchair. I can’t explain it properly. Sometimes as I’m lying here I can almost feel my body move on its own. I know that sounds like some crazy  psychotic shit. LOL  I wish I had the proper words for it. But I am literally drawing a blank. It’s like I can see myself outside of myself. Okay, now I’m  really going in to the realms of crazy psycho woman. 🤣  And I think I just said back to the real world. Welcome to my mind. 😳

I am now going to bid you farewell for the night.  You can thank me later. 💋

Have courage and be kind 🖤

 

Angels-Among-Us · confession · Craziness · Darkness · Depression · dreams · Faith · family · Fear · FUCK · health insurance · healthcare · HELL · hope · lonliness · love · medical · mindless-thoughts · multiple sclerosis · Pain · primary progressive MS · Quotes · Ramblings · RANDOM · sadness · sarcasm · strength

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.