anger · broken · Darkness · Depression · Fear · FUCK · FUNNY · health · healthcare · HELL · hope · joy · lonliness · love · mindless-thoughts · multiple sclerosis · nightmares · Pain · primary progressive MS · Ramblings · RANDOM

Broken

So this post might be a little long. And you don’t have to read I’m just trying to get out what I’m feeling. We are going to attempt a shower today and I’m already having anxiety. But I have to do it because PTA bed baths are not doing it for me. 😋
I just don’t want to roll over or get in that fucking Hoyer sling. It hurts so much even when I have a nice supply of cannabis on board. 😉
Some of you know I have another fracture in my back at L3 and I was supposed to see a spinal surgeon like last month, but I can’t. I don’t want to go because I don’t want to get up. And the worst part about that is, I really want to get up! I know that does not make any sense. LOL

Without help I don’t know how I’m going to ever be able to get out of this bed. But, I will keep doing what I’m doing like wiggling in the bed LOL I have some serious dance moves for someone who is in bed. 💃🏻 I just want out of it. But when I’m lying down or even when my legs are up and I’m elevated I don’t have any pain. So thankful for my adjustable bed. 🙏🏻 The minute someone moves my legs I literally want to die. It feels like my hip is going to snap and my leg is going to fall right off. Sounds like something out of a criminal minds episode. Childbirth wasn’t as painful. I will take a contraction over this any day. 😳


We rolled a couple of pillows and taped them and put a cover on to jam them on the outside of each leg to roll my hip as I’m lying down. Oh holy man! The first day I could only tolerate about five minutes because the pain was intense. But yesterday I actually kept them there for a few hours. I’m hoping that eventually I will be able to get my legs moving without pain. I don’t care what the doctors say and what my MS is going to do with me because I know if I can get rid of this pain I will be up again. I may never walk again but I will be able to transfer if I can just combat the pain. And thanks to my colostomy and urostomy I won’t have to worry about running to the bathroom every five minutes anymore. 😂 Statistically the odds are against me but I’ve never been a fan of statistics. LOL Do not tell my daughter that because that is what she graduated with honors in. 😜

I’m putting on my little arm weights more because I totally slacked off on doing my arm exercises because depression hit it once again. But my little inner child showed up and beat the crap out of depression. Hopefully it’ll stay away a little longer this time. 🤞
When things got really bad after my surgery in 2014 and I completely fell into a very dark place. The surgery almost took my life and at that time I wished it had. I think a lot of people thought that it was getting to the point where I was nearing the end. I felt it, I even had a doctor tell me my outlook was grim. It wasn’t until February 2018 that I woke up. That anniversary is coming up and it scares me. But it also reminds me that I can fight and can get better. I just want people to know don’t give up on yourself no matter how bad it might be! I have been to the depths of hell and I’ve tried to leave a couple times. For some reason they didn’t want me. LOL

Well now that I’ve written a book and I probably lost most of you after the first paragraph I am going to get myself pumped so I can take my shower and not be afraid. 💪👊

I’ll be back… Said in my best terminator voice. LOL
Have courage and be kind!

anger · boredom · Darkness · Depression · Fear · hope · HORROR · lonliness · medical · multiple sclerosis · primary progressive MS · Ramblings · sadness

Procrastinate for 500 please

Lately I think I do a lot of this in regards to doctors appointments etc. My procrastination comes from the fear of the pain it will cause to go to said doctors appointments etc. Just taking a shower is painful AF. And it’s all about my hips due to the fact my legs have been frog legs for over five years now.  And my husband rolls me over on my side I can’t explain the pain in my hip joint area. And then the moment I am in my Hoyer lift and he starts to raise it up, as my hips turn in their joint to the proper sitting position all I can do is cry.  My left hand which I have problems with, already ends up in a claw like fist when the pain hits and I literally can’t speak or function. And therein lies the main reason I don’t want to get up anymore. I can no longer handle the pain. I don’t even want to go to my pain management doctor because as I stated above it hurts to get up and be a normal person sitting like a normal person. So what can I do? I try to move my legs as much as possible on my own which is sometimes futile. My family can’t do it they have lives of their own and my husband doesn’t have time to work with me every day.

Unfortunately like you see in the movies people that are ill have caregivers that come in and out of the home. It’s not like that in real life  unless you can afford it or the state provides it.  Neither of which will happen for me. We live paycheck to paycheck but supposedly we make too much to be allowed help. Go figure 🤷🏻‍♀️ I wish it were like the movies because then I would have a physical therapist helping me daily, someone to help with my meals, showers, and my well-being. But it’s not like the movies. Lately I’ve noticed people are talking about the celebrities that have been diagnosed with MS blah blah blah. I feel for them, I do, but I don’t believe they go through the same types of issues that many of us have. They can afford getting the help they need and all that comes with being a celebrity.  I completely feel for them because they’re stuck with this fucked up disease, but I guarantee having money makes  having chronic illness a bit easier. Or maybe it doesn’t. What do I know?!

I really don’t mean to sound so bitter, but I am a little bit. LOL I think this is all coming out right now because it’s a new year and I am very clearheaded and I am confused and afraid because I really don’t know where to begin or how to get myself better.

Fuck it… I’ll think about it tomorrow… Because tomorrow is another day.

Have courage and be kind

anger · boredom · Christmas · Craziness · Darkness · Depression · Fear · Happiness · health · hope · lonliness · multiple sclerosis · new year · nightmares · Pain · primary progressive MS · Ramblings · sarcasm · strength

As the year ends…

Most people at this time of year are thinking about their New Year’s resolutions getting ready for all the new things to come. I’m lying here completely lost… I feel like I’m in the twilight zone. This year my house was not decorated for Christmas and it was actually just another day. The holidays are not the same for me anymore because I can no longer get up and get my home decorated and make it feel Christmasy.  I’m telling you the Christmas times when I was better my house was decked the fuck out and looked awesome!  Oh how I miss that!

I’m just void of emotion right now.  Like everyone on the planet none of us knows what tomorrow will bring. Although I do know… It’s just going to bring more of the same of me lying in my bed looking around at my four walls wondering why I’m even here anymore. What is my purpose?  What is the point of life when you can’t live it. I know I’m blessed that I get to wake up every morning… But that’s about it. I wake up and I have a couple choices; watch TV, play on the computer, watch TV, play on the computer…  you get the idea. 😉

I’m not trying to be a Debbie downer I am a realist and quite honestly I hate being a realist. I never was until this piece of shit disease put me in this bed for the past five years. And before that put me in a wheelchair. I’m angry, just like I mentioned in a blog a couple of days ago. I don’t know how to get rid of that anger. I look around and I see a lot. I watch people complain about every day issues like not having enough time in the day to get their kids wherever they need to be or to grocery shop or clean their house. What I wouldn’t give to have those issues. My wish for people is too slow the fuck down and see the beauty around you because quite honestly it could be taken away from you at any moment. A dirty house is a beautiful thing because it means it’s been lived in. And having to run around and take your kids everywhere isn’t a chore it’s a blessing that you are able to do it. I know that I took so many things for granted and I wish I could go back and spend time on certain memories and open my eyes more and be more present. But you cannot go back so please I implore you, be present and if there’s something you want to do do it now. Because one day you may not be able to and I guarantee you will  have so much regret. And trust me, regret is paralyzing!

I’m not sure how much more of a fight I have left in me considering there’s nothing for me to fight with. There are no medications I can take so I just have to pray that my MS will be kind to me and not keep progressing. OK I’m kind of laughing at that last sentence because I am primary progressive so I know that it will keep progressing… I’m just asking it to slow down a little bit. LMAO  I really wish that MS were a person because I would beat the living hell out of it.

I think the worst part about being trapped in a bed is the loneliness. Nobody really wants to sit in your room with you whole are you lying in your bed, even though I’m funny as hell and quite enjoyable to be around. 😂 I really am!  If it weren’t for my beautiful doggies I honestly don’t know if I would still be here. I can’t expect my family  to constantly hang out with mom. They have their own lives. And my husband cannot spend every waking minute in here with me either. Everyone complains that my room is so cluttered and I really should throw things away. I don’t think they understand that this room is my whole life. What they see has junk and clutter are things that make me smile. Stupid things like my living dead dolls or my Lucy collection, my lava lamp, etc. Things that to someone else wouldn’t mean anything but to me they mean everything because they are all that I have! 🖤

So please, for me, do me a favor and instead of making resolutions just make a promise to yourself to be present for every moment that comes your way. It could quite possibly change your life.

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…
Christmas · confession · Craziness · Darkness · Depression · falling · Fear · FUCK · health · HELL · Holiday · lonliness · medical · mindless-thoughts · multiple sclerosis · Pain · primary progressive MS · Ramblings · RANDOM · sadness · Wheelchair

I’m sorry, but there’s nothing for you…

What do you do when there is nothing for your type of illness? Yes there is a medication now for primary progressive, Ocrevus, but is it really for us. Most of the studies I see have been done on people with relapsing remitting or secondary progressive. They already had medications. LOL what do you do when there’s nothing for you? It’s too dangerous for me to take any of the DMD medications. So how do you live your life knowing nothing, and let’s face it, no one can help you. How do you fight when there are no tools to help you fight? The only way to slow or stop the progression of multiple sclerosis, any type, is to be on one of the disease modifying drugs. So, please, tell me how do I fight? There are people out there that won’t take those medications because they feel the side effects are too dangerous. I would give my right arm to be on one because I can tell you MS will fuck you up a lot more than any of the side effects from the medications. MS is always working in the background and I don’t care how great your diet is or that you exercise 24 hours a day, 😂 that will not slow or stop the progression of multiple sclerosis! So if you are not on one of those medications, I’m so sorry, but you are a special kind of stupid!

I really don’t mean to sound like a bitch, but I have nothing to help me and it angers me. How do you go on with your life knowing that you  can do absolutely nothing to help yourself. Yes I can watch what I eat and shimmey in my bed to keep movement going but that’s not slowing or stopping my progression. I am so fucking angry. I hate the fucking holidays because I cannot physically do anything for anybody not even myself. I don’t know if people really grasp the concept of being bedridden. Someone told me they were bedridden but that they could get in their wheelchair and cruise around whenever they needed to, that they could still transfer and things on their own. 🤯 UMMM  then you’re not fucking bedridden if you can get up all by yourself and get in n out of your wheelchair on your own.  What the actual fuck! I’m so glad I wasn’t near that person because I would’ve seriously opened up a can of whoop ass on them. LMAO when you’re bedridden you can’t get up out of your bed whenever you feel like it. Then you wouldn’t be bedridden! DUH I cannot even sit up on my own. I can’t even roll over on my own. I am stuck lying on my back for however long I stay in this universe. It’s a whole production getting me dressed and out of my bed and that is probably why I don’t do it very often. And it’s very painful… so there you have it.

Yes I’m angry!!

And every now and then you hear of a new celebrity just diagnosed with multiple sclerosis and they make it sound like they are some sort of martyr. For any chronic illness money talks. Granted it sucks that they are also struggling with this illness but they are able to get the resources that the majority of us sorely need but cannot afford.  I would love to have someone at my home helping me every day. Then I could get out of my bed and I could maybe maybe one day get better. I don’t mean get rid of the MS but physically get stronger and mentally having someone to help me could change my life. But unfortunately the majority of us cannot afford Caregivers nor can we afford to handicap accessorize our homes.  So while I feel sad for the celebrity, I would trade places with them in a heartbeat. I don’t even know where I’m going with this blog today. I can just feel that I’m not in a good place so I just needed to get shit out. As always I’ll be OK but sometimes I wonder how I’m going to be OK.

Have courage… And be kind

boredom · confession · Craziness · friendship · Happiness · hope · lonliness · mindless-thoughts · multiple sclerosis · primary progressive MS · Ramblings · RANDOM · sarcasm · strength · stupid_stuff

Just be you!!

Lately I’ve been realizing that I was always one of those people that worried about what other people thought. I know most of you probably don’t think that, but that’s exactly how I was. I hid it very well  with my “tough“ persona,  but I always wanted to please people. My time in physical therapy rehab changed me completely. I’m now the person that I always wanted to be and if people can’t handle me, then I don’t need them in my life. I’m going to be that tough girl who fights and doesn’t let people walk over her anymore! I used to go out of my way to do things for people that never really cared. And I don’t expect a pat on the back of or even a thank you. But you know those people I’m talking about. The ones who we just have to be friends with when in reality they are no better than us. But for some reason we always thought they were, so we would go out of our way to get them to be friends with us.

I just never thought I was good enough. I thought to make friends I had to buy things, always be the ride, always be the brunt of jokes. I allowed it so it’s my problem and not theirs, but I will NOT allow it anymore. To be friends with me you have to take the good with the bad, and all of the crazy. I’m not going to change anymore for anyone! It’s nuts how it took me nearly 54 years to figure all of this out. Better late than never comes to mind. ☺️

I lie here at night, and when I can’t sleep I just have so many thoughts that go through my head. I just don’t know how to put it down on paper. So I talk text and say what I feel. Half the time I can’t remember my thoughts from the night before. I’ll just blame MS cog fog. LOL I mean if you have to have a disease then by all rights use it as a great blame tool.  It’s those voices in my head that don’t let me quit. It’s those voices in my head that make me strong. It’s that little inner child that comes up to the surface when I need her.

Self discovery that’s really a great thing!

Have courage and be kind…

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!