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!

anger · Craziness · Darkness · Depression · dreams · Faith · Fear · hope · joy · lonliness · medical · multiple sclerosis · Pain · primary progressive MS · Quotes · Ramblings · RANDOM · sadness · silly · strength · stupid_stuff

One minute at a time…

When my alarm goes off at 9 AM to remind me to take my morning medication, I grab my bed remote sit up a little bit, take my meds. Then, normally I will call to my son to bring me a cup of coffee and try and start my day.  However, for the past week or so my alarm goes off, I will grab my remote to sit up and take my meds, and then I just lie back to go to sleep. I was in that mode of, why does it matter if I wake up right now, the same thing that happened yesterday it’s going to happen today so who cares. When you’re bedridden, one day rolls right into the next. Every night I go to bed I know that the next morning I will be in the same place doing the same things for the whole day.

Then, finally, at around 1 PM I told myself and to pull up my imaginary bootstraps and wake the hell up. It was really hard to do. I literally saw no reason for me to actually awaken. But, I did, and I made it through this day.  Minute by minute is the only thing I can hold onto. Any longer than that and I’m not sure what would happen…

The one thing I do know and I am very sure of… I AM an MS Warrior!

Have courage and be kind!

 

boredom · Craziness · Depression · family · Fear · health · multiple sclerosis · Pain · Ramblings · sadness · sarcasm · strength · stupid_stuff

Minute by Minute

One day at a time. More like one minute at a time for me. I really need to believe this and follow it. As of late I’m finding myself wondering about my future with this MonSter of a disease.  I need to stop torturing myself. All I can see in my future is nothing but this bed and this room. I don’t mean to be a Debbie downer, it’s just what’s been going through my head lately. I know the odds for people with aggressive forms of primary progressive MS.  I try so hard not to dwell on what might be, but it’s very hard sometimes. I watched a documentary of Annette Funicello and my heart was broken. I know that she would not have wanted to be remembered that way. I could be way off base and maybe she wanted people to see her like that, but there was nothing in her eyes anymore and I wept for her.  I am well aware that this disease is the snowflake disease and no two people are alike, but it’s still hard to watch someone’s struggle with a disease just like yours. Just like I tell people not to google their symptoms, I probably shouldn’t watch movies or documentaries about people like me. 😉 Again, I need to follow my own advice.

 

 

 

 

 

 

I’m just so over this MS thing! I just want to give it back and get a refund. 😊 It’s like, I’ve tried it I don’t like it, please take it back. In a perfect world…

That is all, for now.

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 🖤

 

anger · health · medications · multiple sclerosis · primary progressive MS · Ramblings · Research · strength · stupid_stuff

Fighting through…

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!