It seems sarcasm and humor pisses people off. Well unfortunately that’s how I get through my days. The Internet is full of keyboard warriors.￼ you’re really tough behind that computer screen aren’t you? 😂 ￼The saddest part about it is if they really knew who you were, they would understand how you’re feeling and why sometimes a snarky joke gets me through the day￼. Instead they have to make a public announcement of how disappointed they are in you. Seriously I could care less what you think of me or if you’re disappointed in me. You’re not my parents nor are you my husband or children. If you have a problem with someone, be adult, message them instead of calling them out in front of everyone because you need attention. If something I post offends you, then scroll right by.￼￼￼ i’ve been out of high school for a very long time and I don’t need it in my life now. I’m very happy that on many social media sites you can unfriend, unfollow, and block people. It’s much easier to just do that instead of making an announcement. Toxic people suck. I guess that me being brutally honest and unapologetically me doesn’t work for some people. Oh well… Bye Felicia 😇￼￼
As always, have courage and be kind.￼
Bahahaha you know this is true! There are no more presents to wrap because by now they’ve all been unwrapped. People are deciding if they should take down Christmas immediately or if they should wait and take down on New Year’s. The malls are still pretty crowded because people are doing returns and/or finding what they think are deals after the holiday. People in the work force are praying that their company will also give them the day before New Year’s off. Who doesn’t want a four day weekend?
Then you have people like me who can’t distinguish one day from the next. I still use an old-fashioned calendar to mark days off as they go so I don’t get lost. 😂 I would love to be able to blame this solely on multiple sclerosis, but I can’t. I mean I have become more scatterbrained but I’ve always been a little off. LMAO just ask people that have known me for years. Trust me they will tell you the truth. 🤔 I am not sure if that’s a good thing or a bad thing.
I think the five days between these two holidays are quite similar to the feeling you get when you’re sitting next to a stranger and you’re not really sure where to put your arm(s). You know that feeling… You don’t want to touch them but you also don’t wanna look standoffish or rude so you fiddle with your arms as you’re not sure how to hold them. What ever will you do…
And with that please remember to always have courage and be kind! 🖤
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!
I’m not even sure how to explain it. And I truly am sad most days, but today as I opened my eyes I felt nothing. Completely void. I was alone for about an hour and realized I didn’t have any water. I forgot to ask for some before my son left for work. And over that small little thing, I just sat there, emotionless with tears running down my face.
Only emotion I feel lately is anger. Anger because we cannot afford for me to have in-home care. My insurance company, one of the big ones, doesn’t cover that. And God forbid my husband‘s company pays him what he’s worth. He’s given near 20 years for that company. He’s trained more people there than anyone and never got paid for that. And all the while he did his own work as well. And the people he trained. now make much more money than he does. I guess because where he works most people are familied in. Yet my husband has more letters of recommendation and more people that will only work with him than anyone else. He gets calls at home from people for help. But this multi million dollar company can’t pay him enough for all his dedication and hard work.
And yes my husband has taken time off, for me to help me. He uses his vacation time and sick pay he’s never taken off the company without using his own hours. Everyone else is constantly on vacation. But that’s what the higher ups do in my husband’s company they go on vacation and leave the work to the real people who know what their doing. And then someone had the nerve to mention my husband taking time off. Again he uses his sick and his vacation pay so it doesn’t come out of the fucking company. And I pay attention, his colleagues take vacations all the time. But they actually get to take vacations my husband’s “vacations” are usually spent with me in the hospital.
My husband is a good man and the best at the job he does. Like I said it’s not just coming from me it’s coming from stacks of letters I have at home that people have sent him. And I did work with him years ago and many times people called they would only work with him.
If anyone reads this that works with him, cut him some slack. I wrote this only me. Because for 20 years I’ve watched my husband works his ass off but because he’s not an “ass kisser” and honestly that’s what most of those people want. And I’m glad he’s not, that’s one of the things I love about him.
Emptiness, really sucks. You see I can’t get excited about things because I have no way to get up to do the things that might excite me. My family does what they can when they’re not at work. I can honestly say I really need a caregiver. Maybe if I divorced my husband and go on government care that will help me. And the sickest part of that, is people actually have to do that. We are not the richest country in the world. Our system is completely fucked!
Now I’m off to watch some more brain cell killing TV. And that is my life.
I know, two blogs – one day.
Just a mellow check in. lol Mellow, as in me… mellow. Listening to an amazing mix my daughter Ashley made for me. Playing games on FB. I found some I forgot I had. Bubble Witch Saga for one. It’s fun. I’ve been playing it for over and hour. It has me mesmerized.
It’s 1:30 am and, as usual, no sleep in sight. To medicate, or not to medicate? That is the question. At this point, I’m not even sure of the question. Are you? Doubt it.
I really need my room painted something other than white. Some fun colors to match my personality. And no, not black. lmao Although…
My daughter Shelby is itching to paint the interior. I explained the concept of money to her, and explained that we have none. 😛 Yet, it would be a nice change for me. Believe me, I need some change. Feel free to donate to, the help me paint house fund. [donate button on the left] 😉 I actually want my room in pale grays/blue colors. Muted and simple. The rest of the house in light mochas. The girls painted their own rooms in the colors they wanted. Turned out wonderfully. The boy hasn’t painted his room yet. I’m thinking black. Just kidding… or am I.
I’m kinda thinking being up most of the night is okay for me. Not sleeping may be the way my mind is protecting me. Let me explain; during the day people are bustling. I hear cars going by and read about fun things people do. I feel I’m missing out on life. At night, my house is quiet, the road is quiet. Most are in bed, like me. So, by sleeping in the afternoon, I sleep through the sadness of dreaming of lives I will not lead. Being awake at night, the house is quiet, the road is still. I can take it all in and not feel broken. I know, it sounds quite mad. It’s just hard to put to words. I’m not even sure what I’m trying to say. go.figure.
Do you ever hear a song that takes you back to a time and place forever in your heart? Does your heart ache? I literally either cry for a loss, laugh at fun time, or get ‘oh Hell no’ angry. lol Listening to music is one of the things that keep me sane.
2:15 am and all is Unwell. Love that song.
Back to my games! Peace!
I started this blog with the hopes of chronicling my MS and my thoughts, etc.. Im realizing that with Primary Progressive MS, there is not much to chronicle. There are no more medications for me to try; hell there are no medications for PPMS. Wait, I’m lying. There is ONE possibly coming to a drug store near you, winter of 2017. But, not for me. Yes, it will be the first medication for PPMS, but I don’t qualify. My EDSS score is too high. I’m between 8 and 8.5. In other words, I’m too far gone! Well okay then.
I sit/lie here 90% of the time. I’m not even sure where I’m going with this entry. I’m not even sure why I’m even blogging it. Maybe out of boredom. I guess this is my personal diary that I just happen to share. A place for me to come back to and ‘remember’, the good and the bad. A place for me to vent. A place where I can say whatever the fuck I want.
I just wish I knew how to get my thoughts out of my head and onto here. A jumbled crazy ass rollercoaster is the only way to explain my thoughts.
“Outlook is grim”, has been the description of two doctors regarding my life now. Well no shit… But, did you have to say it out loud!! RUDE much. 😛 And, I know I know, anyone can die at anytime. They could walk out of their house and get hit by car. I get that. That would be easy. We start dying the minute we’re born if you want to get technical. Picture yourself lying in bed 24/7 while your body slowly but surely dies daily from illness. It’s not for the weak. With PPMS, there is NO cure, NO remission, NO parole. So, the next time you want to use the ole. “well anyone can die just from blah blah blah”…don’t!! Above all… DO NOT compare one illness to another, especially if you, yourself, do not have said disease. You will never ‘get it’ unless you ‘get it’!
Scary part is that sometimes I really believe I’m going a bit mad. Seems par for the course…
Just when things seem to be getting better, BAM, it hits the fan. This why I can not ever be the shiny happy positive person others want me to be. And I try, but fuck a lot of that!
Unleash the flying monkeys!!
I’ve left 2 messages for my primary care doctors office manager. My doctor turned a specific issue I’m having over to her. We spoke when I was at my doctor a few weeks ago and she was supposed to get back to me. Nothing, nada, nil. I’ve called twice and left detailed messages for her to please call me back. And, I used my nice phone voice. Nothing, nada, nil. The issue is quite a big deal for me. What has happened in the last 30 years when it comes to doing what you say in the workplace. FUCK!!
Unleash the flying monkeys!!
Now, to get my pain meds, you always need a scrip every month, no refills… all thanks to the wonderful druggies out there that abused the medication, and the doctors dumb enough to believe them. Normally I go pick up the scrip at the office with a quick check in every month. So, I called yesterday to see when I can pick it up, and they said they’d talk to my doc and call me back. Bahahaha, you guessed it, no call back. I’ve been going to my neuro for 19 years. WTF. So I called back and they said my doc will be calling me back. I have a real illness that causes real pain. To bad I can’t fake it, maybe then I’d get the medication I need. FUCK!!
Unleash the flying monkeys!!
Why, just why… Come on Universe, cut me a fucking break. I have an aggressive form of primary progressive MS. NO treatments available to me. I’m bedridden with double stomas, degenerative disc, muscle spasms, tremors, constant numbness, and unable to do basic things like roll over in my bed or even sit up. I deal with severe anxiety and depression, complete and utter loneliness. What fucking more do you want from me? Sometimes death sounds very inviting.
Unleash the flying monkeys!!
But, fuck you, I’m not a quitter. And now I’m just pissed off. Do not mistake my disability for weakness. My mind still works and is smarter than you. Look out, here I come!!
Oh what a World…
So, my friend Steph wants me to do an ‘Ask Tracy’ sort of thing. For some reason she finds me funny and refreshingly errrr, brutally honest.
Right now I’m pretty much bed-ridden, a prisoner in my own body. The boredom is making me a bit nutty… Even more so than normal. lol So I thought this could be fun.
So, if anyone has any kind of question, ask me in the comment section of this post. Remember, I am brutally honest, so if you do not want to hear/read what I think, then do not comment. 😛