It’s been so long. But I found a spot, even if only for a moment, there was no pain. It could be the adjustable bed, it could be the medicinal meds. ✌️ Whatever it is, it is AH-mazing!!! I can’t lay on my side or move that much, so for the last four years I’ve literally been on my back. (minds out of the gutter) and now as I am talking this blog in to my phone, I’m starting to feel a little bit of pain. It’s mainly the butt bone!! 🤪 If my butt had a voice it would probably tell me to get the fuck off of it!
So I’m watching ‘Grace and Frankie’, season four. It’s freaking funny as shit! And yes that is how my mind works, it flies from one thing to another. I can’t keep up with it most days. That’s probably why I do not sleep easily. My mind goes from 0 to 60 in about a fraction of a second.
So, hey, I just adjusted my bed and now the pain is gone again… Hooray! And now I have one dog sleeping between my legs under the covers and my adorable little pit mix, who is as sweet as the day is long, lying next to me.
^^^ And this is what happens when I am bored, unsupervised, and highly medicated. Snapchat pictures with filters. Does it get more boring than that??!! You have to admit they are fun and they make you look adorable. So why the fuck not.
MS is an evil bitch! For the first time in a very long time I’ve been feeling “happy”. I haven’t felt this way in quite some time. I learned many years ago to downplay my emotions. It always seemed to go bad when I’d mention the “H” word. lol Like the other shoe would drop if I even thought of it. And, BAM, it seems to be par for my course. The MonSter, that is MS, always jumps in to harsh my mellow. And the bitch is jumping on a trampoline right now. I’ve been doing pretty good. Home Depot is going to get my window issues fixed [knock on wood] and life in general is good. So, I should have expected something to happen. I always expect the worst and then when the best happens I get giddy. 😉 I know that seems like a bad way to look at things, but for me, it keeps me sane. Well, I tried looking for and expecting the best this time, and damn if MS didn’t pop up and mess my shit up again. I was actually feeling less fatigued and wanting to do things. But, no, she had to pop in and remind me of my ‘disability’. I’m feeling drained and out of sorts. Depressed and tearful.
I hear the saying, I have MS, but MS doesn’t have me, all the time. But, um, nope… MS does in fact have me. For me it’s all about how I handle it. I can fall apart and give in to it, or keep fighting. I chose to fight. I have PPMS [primary progressive]. My MS is no longer ‘invisible’. It’s out there and in your face visible. I am in the 10% group with my PPMS, and many have no idea there are different types of MS. This page, here, quickly explains the types.
Beotch!!
I’ll get through this and keep pushing forward, but sometimes it gets so frustrating. I’m going to throw my pity-party for now, and everyone is invited! 😛
my mantra
Now I am going to try and find that ‘happy place’ again. I may have lost the battle to MS, but I will win the war!!
I try hard to find the humor in having MS, but honestly…NOT funny! For me, the only way to cope is to find the humor. It’s getting harder daily.
To be ‘upbeat’ about it, I do have blessings in my life. I have a hubby who stands by me, 3 fabulous teenagers [yes fabulous and teenagers in the same breath], a roof over my head, food, and the list goes on. Roger [hubby] has spoiled me: mini fridge in my room, microwave, 40″ flat screen, hospital table, MAC, iPad, iPhone, etc. My parents purchased me an awesome king size adjustable bed. So on the outside it may seem ‘all good’. Yes, what a life. I can spend my time cozy in my bed, watching my Crossing Jordan on Netflix, dozing, cuddling up with my 3 dogs, play on my MAC. Joyous, right!
But on the inside emptiness prevails. I’m alone most of the day, no way to just get up and go, have a life…a quality life. I can no longer make my jewelry as my hands drop things all the time. The stress and sadness that causes is unbearable. Yet another thing my MS has taken away from me. Sometimes I think I must have been a real bitch in a previous life! Most people would laugh and say, “In a previous life?!!” 😛
So how do I cope? Never said I do, I just keep on breathing. I’ll never cope too much has been taken from me. Being primary progressive is a slow drawn out death. When dx’ed in 1997 [finally] I have gone from a cane, AFO’s, walker, manual wc, to a power wc. The fatigue is paralyzing. And fatigue and being tired are two separate issues. Being tired, I can sleep. Being fatigued, I just lie there, empty and alone.
please no more
I’m feeling all of this right now as new issues happening yet again. I’ve tried many different meds. All of which did not help or caused other problems. Now, the Tysabri, may have to be stopped due to a rise in my liver counts. We will find out next month. Two blood test have shown a rise, if the third does, yet again, another med bites the dust. After awhile you feel like ‘why the fuck should I keep trying!’ With every new issue it feels like another part of you has died. The mourning period starts.
I know, I know, “Poor me, pour me a drink!” I wish a pity party was that simple. And trust me, the last I want or need is anyones pity!! That just pisses me off. This blogging thing is to help me get it out and down in to words. Trust me, I know I’m no writer, but it’s my blog and I can blog if I want to! HA!!! I’ve not been blogging much as my hands will not cooperate. I have Dragon Naturally speaking and am trying to figure it out. lol My problem is it won’t allow the work fuck!! You know that doesn’t work for me! 😉 Figured I’d blog to let my readers know I’m still alive and hmmm not kicking… you get the idea.
One last lil’ diddy… ‘Be kind, for everyone you meet is fighting a hard battle.’
Off to watch more Crossing Jordan! [love me some Nigel]
On the days when the depression hits and it feels like nothing can make me smile. I get out my Adam Sandler Movies. Why, because he and his buddies crack me up. Some do not like his kind of humor, and that’s cool, but I love it. I love anything that makes me laugh. I love off kilter humor, raunchy humor, stupid humor, really any humor. For me laughter is the best medicine!
I also have a couple of his dramatic roles which I think are amazing. Reign Over Me was wonderful. Now, Punch Drunk Love is not a fav, but it still was well acted and a bit off kilter which I like. I have many of his movies. It is hard to find a favorite. I also love Grandma’s Boy. He did not act in it, but worked on it. His friends are all in it. I think that is also why I love his movies. All his buddies are in them as well. It’s like a family affair!
Today I watched Mr. Deed’s, Happy Gilmore, and am about to watch 50 First Dates. I always joke to my hubby I could be the total goober in the wheelchair in an Adam Sandler Movies!! rofl Honestly, just to meet him and all his friends would be a cool thing. They really do seem like cool people. Hey, maybe they are pricks in person, but I doubt it. And really, I am hardly ever wrong! 😛
What’s funny is each movie does have a moral, a good story behind it. They are about family and being there for your friends no matter how stupid you have to be! lol I guess it’s all in how you want to look at it, your perspective! They are just funny! From The Wedding Singer to Bedtime Stories, they are just fun movies! And who can forget The Waterboy! OMG, that one kills me!
Even my hubby likes his movies. For my hubz to actually sit and watch a whole movie it has to be good. Grandma’s Boy [Adam Sandler is Executive Producer] is hubby’s fav. Although last night we watched Little Nicky, and hubby was dying. I had to keep shushing him as he was laughing to friggen loud. Between Rog and Austin I could not hear a thing. Not that it mattered as i know the movie by heart! lol
After watching Mr’ Deeds my favorite line became, “I’m sorry, All I heard was blah blah blah, I’m a dirty tramp!” And sadly for those around me, they hear it all the time! lol
So there you have it, I’m an Adam Sandler and crew junkie! rofl
In all seriousness, with my disease it is hard to find things that really make burst out laughing. His movies are one of those things. So keep on making them Adam and friends, and I’ll keep on watching them…over and over again!! 🙂
So what do you do when you fall, can’t get up, and your only kid home has headphones on with loud music? And you’re not near the phone as a diff kid borrowed it and left it somewhere else. [why you got up in the first place to find the ringing phone] Well, welcome to my world!! rofl
I finally crawled to my chair and after about 5 minutes got in. Then rolled to my son and let him have the new rule…NO MORE HEADPHONES WHILE IN THE HOUSE!! He was mortified and felt awful. I was in tears and half laughing as whenever I fall I get that “I’ve fallen and I can’t get up” commercial in my head.
I really think I need video on all the time as sometimes it is quite comical when I fall. The best is the crawl to find somewhere to try and get up on to get in my chair.
I no longer shower alone as I would be horrified if I fell and had to call for help. I want no paramedics seeing my wobbly bits all over the place. lol This is the reason for our [eventual] bathroom and doorway remodel.
My bathroom design [copied from my blog at fab40]
So, this is one of those ‘it could happen’ blogs.
As some of you know, for me to shower is a huge chore. Someone has to be home to help me in and out of the shower. Now mind you there is only about a 3 inch step over, but to me it’s a foot high. And the glass shower doors make it hard to maneuver into my shower chair. So, someone has to lift up my leg to get it over the 3 inch rise. And getting out… we will not even go there as that is a comical scene!! lol
Well, when we went to Carlsbad my parents set the hubz and I up in a hotel with a handicapped room. The shower are was the bomb!! The bathroom was basically one big shower. The floor sloped a bit so water ran into the shower area. There was a built in chair that was high enough for me to get on and off by myself. OMG, I was in hog heaven.
So, I have designed my lil shower area for me.
Right now the area contains the potty and the walk in shower stall. I can purchase a shower/tub for handicapped persons, but then Rog would not get the nice stand up showering he likes. And the one I like is in the 6000 dollar range. But, if you want the best, get the best!
So, my alternate idea…
We will gut the area, paint with moisture wear paint, then tile the whole area with a slight slope to the drain already there. During the tiling we will add handicapped bars which will enable me easy access to get up and down. We will also be adding a teak built in fold up and down chair for me.
Now, right now we are broke thanks to having to fix the broken AC. But, I am going to talk to a contractor I met at Lowe’s and get some pricing. The gutting and painting part we can do ourselves to save some money, but the rest we will need some help. Rog could do it, but he really does quite enough around here.
This is really exciting for me even though it is still a ‘it could happen’ idea. Aw hell, it’s a ‘it will happen’ idea.
It will be so cool to be able to shower all by myself and have one thing I am able to do alone!! You have no idea!!
Making it Through the Rain 