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!

 

family · friendship · hope · love · multiple sclerosis · primary progressive MS · Ramblings · strength

There are signs everywhere

When I feel like I can’t go on and I’m at my worst, things happen that pick me back up from the depths of my own hell.

On June 18, 2017 I joined an MS support group on Facebook. After a few months I was asked to be a part of the amazing administration team. 🤗 If not for this group I don’t think I would be holding on to hope or to life. I have met the most amazing MS warriors on the planet in this group which is now over 10,300 members strong.

Today wasn’t starting out to be very good. #Understatement 😉  When I came online I was greeted with wonderful comments to a post on Facebook by some amazing people that I met through the group. Another beautiful warrior messaged me regarding a gift she is sending me. ♥️ And then when I went in to the group, another amazing warrior sister posted a few memes and one of them resonated with me directly to my soul. I felt the need to come here and blog. I really can’t stress enough how this group and all of the amazing MS warrior brothers and sisters help me through every day! Now there are some days where I wish I could jump through the computer screen and junk punch a few of them 😂  But overall 99% of the members are absolutely wonderful. The group makes me feel like I am home.

And now without any further ado the meme…

Now if only I could have her hair. ☺️

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.