So last night while creating my [medication induced] blog my mind went blank. As I was trying to find a ‘witty’ way of ending, I put down that I lost my train of thought. I looked at it a few times and and BAM… a thought hit and fit me perfectly. Hence the birth of:
Yes, yes I had to make a mini banner!! lol
Now, I am not sure if it has been said before or not, but for now, it is mine…all mine! 😛 I had friends telling me that it gave them a laugh and they loved it. It makes me very happy when I can turn a [sometimes] bleak blog into something that makes people smile. That’s how I roll! I try to always leave readers with a smile even when my blogs may get a tad depressing. My favorite emotion is laughter through tears, and joy from sadness, why I find a way of ending on a ‘happy’, even sarcastic note.
Out for now [at least a couple of hours]. As always:
So, another ‘Sleepless in California’ night going on here. At least no snoring issue! Poor hubby is in sofa city tonight. Thankfully, for him, it is a nice pullout bed with a nice mattress pad thingie. He can snore until the cows come home without fear of waking up with a headache! I actually have my room and my bed all to myself too. Usually when dad is in sofa city one of the girls come on in and bunk with the mom. They worry about mommy being all alone. [not knowing mommy loves to be alone…sometimes] I’m watching “Bride Wars’, playing in FB and blogging. Does it get any better than this, I think not! I was going to watch ‘Silence of the Lambs’, but figured maybe not when I am all alone! lol That movie freaks me out.
Chance [Border Collie] is sleeping on the bed right next to me and Sadie is on her bed on the floor. Dexter is in with the girls, so all is quiet on the western front. Every now and then I hear Austin yell at his computer game. This is how I know he is here and alive. 😛
As I watch the movie [Bride Wars], I feel sad. I see such an amazing friendship and cry for one like that. I know it’s a movie, but I have heard others talk about their BFF’s and I feel detached from it. I mean, I feel very close to a select few of my friends, but wish we all were closer to create the bonds of those who have grown up together and live near one another. I am probably not making much sense here. Shoot, I do not even know what I mean. Here I go, rambling yet again.
I mentioned in a blog before that I tend to write what I’m thinking and how I am thinking it. So, many times my thoughts are out-of-order and all over the place. If you can understand me, then you might be a bit nutty like me. lol Or like the song says; ‘I’m not crazy, I’m just a little unwell’. I have all these ideas and thoughts that pop in my head, but most of the time they make no sense whatsoever. They must be medication induced or something. I know some of my dreams [when I actually sleep] are. lol I just cannot pinpoint why I am all over the place lately. Usually I can focus on things. Now, not so much.
I truly hate leaving my home. Kind of scares me as at home I am safe and in control. When I go out, I am at the mercy of others and my wheel-chariot. Others for help in reaching items on high shelves, my WC if the power dies. Others drive my van with me in it, as even though I am still able to drive, I prefer not to. I have this nagging fear in the back of my head that all of a sudden my right leg will go, like me left, and I will not be able to brake or accelerate. That has not really ever happened before, but the fear is there. And it is terrifying.
I keep having one dream that is the same. Maybe why I am having a hard time sleeping. I dream that I wake up and am completely paralyzed. Like the woman with MS that Dr. Kevorkian helped. So, ya, that might why I am having trouble sleeping. Hmmmm, think I’m on to something. I know that progression is in my future. The rate of progression is not known, and I am praying it is a slow(er) progression. Oh shit blah blah blah.
So, my train of thought has left the station. Peace out!
The hubby is ‘softly’ snoring, kids talking as quiet as kids can, and I cannot sleep. So I am here to ramble…
Do you ever feel like something is missing, or you forgot to do something important? I HATE that feeling! I am not one to forget things, and yet lately I forget everything. My MS is messing with my cognitive skills, and that pisses me off more than losing the use of my legs. Shit, even more than incontinence issues. I actually forgot to pay two bills in the past months. That is so not me. Thankfully we are never late and I got out of late fess. Get this, I even have reminders…and i still forgot. It’s the damn ‘some-timers’; sometimes I remember, sometimes I don’t! 😛 So, if anyone out there knows what I am forgetting to do, please let me know. rofl
This blog may be out of sorts, as I have no clue about anything. My girl Ruby made it through her 11 hour back surgery with flying colors, so no more worries there. Christmas is over and it was good, but YAY it’s over, so all good there. A woman needing help, got help thanks to Laurie and her call to arms at Facebook. So that is really good.
I am feeling sad about my good friend Lu’s father, passing away. I so wish there was something I could do to help her through this time. Lu. if you are reading, know you are in my thoughts and blessings and if you need me, I’m here! I cannot imagine her pain. That is the problem with having friends so far away, I cannot get over to her home and give her a hug. Love ya Lu!
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I have so many thoughts going on in my lil head and cannot sort them out. ARRGGHH I get so frustrated when this happens. There is no sleep in sight and deciphering my crazy thoughts. I start thinking about new designs for a bracelet, then POOF my mind goes to how can I get out and start doing some photography, then POOF thinking about a blog I want to write on finding my center. I try to concentrate on one, but then something catches my eye and I’m off to another dimension of space and time! lol
I have lil chicken scratches of things I think of and want to accomplish someday. I want a concert ukulele, but then I would like to try a zither or harp. I have heard the vibrations of musical instruments on the body help to center some, find a sense of peace, if you will. I re-tried to play guitar, but my hands were not strong enough to hold down the strings. We have a piano, which I mess around with, but it’s a lil big to have in my bed on bad days! So, I am looking for something small enough to keep with me. I need music in my life…
I figured by now I would be getting tired…NOPE. Just more goofy. Maybe it’s my meds. Ya that’s it, it’s my meds.
Hubby is no longer ‘softly’ snoring. Now he is buzz sawing it. It’s like razor blades being slid through my brain.
me...
I just ordered a snoring mouthpiece thingy for him. I so hope it works or he will be back in sofa city soon. I see visions of me, a wrought iron skillet in hand, and his head. I am thinking ear plugs before that vision becomes reality!! I can still hear him even when he is in sofa city, even when I have my ipod on. The house shakes. I’m thinking it’s it the big one [cali, earthquakes], but no it’s just him…snoring! I have some earplugs from when I had my last MRI. They kind of rock. Better than the ones in the store. But they suck to sleep in. So, pray for the hubby that the mouthpiece works, or no more cal king bed for him!! mwaaaahhhhhhhh
OMG, so hubby is snoring. Not too loud now as the plugs are in, but now one of the 3 dogs just popped a HUGE bean and it stinks!! Holy man…where is the spray? rofl This is so life in my world. I love it! Loud and smelly and I would not change a thing. [maybe get some nose plugs too]
I need Mr. Sandman please. Hope he’s cute, maybe Gerard Butler cute. Maybe not, as no sleep would happen if he was my sandman!! YUMMY man!
Ok, so now going to go surf the net a bit more, maybe play a game or two and hope for sleep. For those who made it through my ramblings, bless you. You are brave! Now I bid you good-night!
Barbara Rhyne tucker was to be without heat, without the basic human essentials in KC, MO. How can this be you ask? Well, even now we still have ‘slum’ lords in our Country that make money off of those less fortunate. Yes, here in the United States of America!
This morning, I stood up with Laurie and sent emails to various news stations:
Does Ebenezer Scrooge really exist? He does for the tenants living in the apartment complex with Barbara Rhyne Tucker.
How can this be happening in our World today? How can we allow ‘slum’ lords to deny basic human rights for their tenants?
This man denied a heater to her because she took a stand against his tyranny and called the city on him. Someone needs to stand up and get her story told.
There are elderly in this building as well. In blizzard conditions and without heat, this could be devastating.
So, before you head off to your warm and cozy homes, Speak up and take a stand.
Let’s show the World that Christmas miracles really do happen!
When the world says, “Give up,”… Hope whispers, “Try it one more time.”
Steve Kaut from KSHB-TV responded:
We interviewed your friend and the story will run tonight.
Thank you for the heads up.
Steve Kaut
KSHB-TV
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As you see, it does start with one person, one person who truly cares. Laurie Zieber was that person. Thanks to her and the many people that joined her, Barbara and the tenants at her building will be heard. Stand up against tyranny, stand up against wrong, be the voice, and miracles WILL happen!
PISCES Your mood just doesn’t seem to want to lift itself up very high today — there may be something down deep that’s troubling you. If so, you need to address it, no matter how uncomfortable it may make you feel.
Wow, spot on today! The problem is figuring out what is troubling me. I have an almost empty feeling and cannot figure out what it could be. Now do not get me wrong, most days I really am feeling pretty good even with my own personal issues. You have to learn to change and adapt. It is very hard to ‘re-write’ the story you thought you were going to live, but sometimes that is the hand one is dealt in life. But, even when I do my best to be positive, find the good, look for the light, make the lemonade, and all the other cliches we are told, it can still become overwhelming.
I really wish I could ‘lift’ up my mood daily, in a perfect world! My friend had someone tell them to think positively instead of negatively. Um DUH!!! Really, does this person think she prefers to be negative! Shit happens and sometimes it is bad shit!! I bet the person that told her that has no real ‘chronic’ issues in life. Honestly, I feel those with ‘chronic’ illness try to be more positive than those without so they can find that light at the end of the tunnel. Sorry that sometimes we may sound or feel negative to you. Deal with it or do not ask us what’s up. When you are in a wheelchair and are told to ‘keep it inside’ because medicare and/or private insurance will not warranty it for you, that is BS and yup we may feel negative. I guess it is ok for these assholes to think more about the money than the independence they arre taking from another human being. The next time they go outside and get fresh air and walk to their destination, I hope they remember what a fucking luxury it is. At least that is what my private insurance told me one when i needed a specific wheelchair. The wheelchair I needed was a luxury not a real medical need!! Hopefully no one in their family ever needs this ‘luxury’. What an incompetent asshole! And now medicare is taking from my friends independence. NICE!!
I was talking to my MS counselor yesterday. I was telling her how I feel nothing. Some days I get up and think, ‘What’s the point?’ I wonder why I even bother getting out of bed. Sometimes I don’t. I really hate this feeling. It’s not about poor me, or feel bad for me, it’s just my state of mind. I’m sure with or without a chronic illness some feel this way. Is it depression? Maybe. Is it the time of the year? Maybe. Is it personal issues? Maybe. Is it all of those rolled up into one? Probably. So how do we get through it?
It is very hard, for me, to ask for help. Help of any kind. I’m the type that wants to fix everything. Help [or try to] everyone. It keeps my mind off of me and my issues. It is much easier listening to other people’s issues than talking about my own. Even when I do find someone who wants to listen. Even then I try to make fun of my MS, my falls, my issues with it. When in all actuality, it’s not funny. But laughing at it is what gets me through the hard times. After my last fall, I have been thinking a lot about safety. I am alone much of the time. And the fear of falling is what keeps me secure in my room all day. I’m too paranoid to venture to far from the safety of my bed. I do keep the phone with me even when I do the walker trip to the potty. I always laugh and think what good the phone will do me if I am unconscious. 😛
So, I am a hermit in my own home, my bedroom. You can tell where I sit all day on my bed by the ‘dip’ in the mattress. 🙂 It is just ‘safer’ for me right now. So, that is why i wonder, ‘What’s the point?’ Why bother waking up at all to just sit in the same spot all day. I know I could get up, and do something, anything. But, lately it is just easier to sit in my ‘dip’ and medicate!
So, will someone please tell me, what’s the point? P lease none of the, ‘well you’re alive’ or ‘it could be worse’. You see, it IS going to get worse. Just not sure how quickly it will come…
So, yesterday took a bit of a fall. Luckily it was on the way back from the potty or it might have been really bad. [if you get my meaning] 😛 I just kind of tilted a bit with my walker. Knew i was going down so prepared for it. As I landed on my bum I fell back and brushed my head down the entertainment center in our room. Didn’t hit it hard, just kind of slid down it. Did it hurt? Not so much, but my bum is sore! lol And when I fell I kind of tightened my body so a bit sore today. No real tears, but a bit of a giggle thinking I need video of these falls. I would so win America’s funniest home video shows! lol My neck got the worst of it from snapping back. Thank God for muscle relaxants!
The hardest art is getting up. Took me around 15 minutes. I had to crawl to a low spot to get my bum on something to be able to get up and grab my walker. So, here I am crawling while pushing my walker ahead of me. Then, slide on to the bathtub side and find the strength to get up and grab my walker. I am very ‘talkative’ while doing this. Cussing, telling the MS it will not break me. Telling it that I will get up and when I do to look out. My 3 dogs didn’t help the matter as they were worried and all over me as I was doing this. I was thinking I could wait for the kids to get home, then realized it would be about a 4 hour wait. So not sitting on the floor for 4 hours! lol
I finally got back to my bed and promptly fell asleep. The kids got home, made me something to eat and then fell asleep again. Logged on to blog talk radio for She Speaks to Inspire and fell asleep. I could not stay awake for anything. I get a bit scared when I feel like this. Afraid one day I may fall and not be able to get back up. It gets me thinking I should only use my wheel-chariot. But, I cannot do that. I will walk, even if it is only a few feet with a walker until I am no longer able to. Stubborn, yes I am and that is what keeps me going when I want to give up and throw in the towel.
I cannot seem to find myself anymore. I feel so lost lately. People think I am all together most days, and most days I try to be. It gets so hard keeping that mask on but most do not want the ‘real’ me. I am sooooo friggen angry and pissed off at this fucking disease. I’m primary progressive and the realization of it just hit me. I am going to get worse. So please do not tell me anymore it could be worse!! It is! I hate feeling like this. I’m not a quitter, not a poor me pour me drink kind of girl. But lately I cannot pull those damn bootstraps back up!
I cannot seem to ‘wake’ up. I am so tired all the time. I get up, get the kids off to school and then lie back down. I want to get up, make jewelry, anything, but I have no energy for it. Just getting in my chair, bringing my computer and my things out to my table is so tiring for me. Man, call me a whaaambulance please! I get so mad when I feel this way. I hate when others whine and hate even more when I do. And here I am doing what I hate. I guess it’s better to write it out here than whine to my family. They have to deal with enough already.
I see all these ‘self help’ articles, books, BS!! They make me crazy. They all say the same damn thing. Be good to yourself, love others, love yourself, blah blah blah… No shit, common sense maybe. Look at your life, change the things that are wrong and work on yourself and your relationships. Find the root of the problem and deal with it head on. What were your dreams? Find them, go do them. WTF!! Not everyone CAN do what they intended. Sometimes life throws youobstacles. That’s when you need to change the dreams you once had. I had dreams, hopes. Now all those dreams and hopes had to change. I look all around for something else to fill those voids. But, being unable to move much hinders those as well. I WANT to work. I hate not being able to. Trying to find a legitimate work-at-home job is almost comical. If I had money up front to pay these jokers, I would not need their stoopid job. Maybe I should write a ‘self help’ book. All it takes is a bunch of BS and a cool cover to sell.
So how does one ‘deal’ and or ‘get over it’? I have heard those lame ass comments more than i can say. “Well you just have to deal with it.” or “You need to learn to get over it”. REALLY!? You get MS or any other chronic condition and you deal with it or get over it. Or, better yet, SHUT UP and do not speak! Easy peasy. Actually I do deal with it, hence my different mask for different occasions. Getting over it is a different story as daily I am reminded by the fact I cannot walk and am so fatigued I cannot get out to my front room in my own home. I am reminded daily when I try to sit up and the pain hits me like a locomotive.
I sit here in a fog, getting hard to even know what to write anymore. I lose my train of thought in a split second. I get a thought but then cannot seem to get it out on ‘paper’ in the same way I am thinking it. My cognitive issues seem to be getting worse, and that is the hardest part for me right now. I am a smart woman and the thought of losing my cognitive abilities scares the shite out of me, even more than incontinence at 45.
So, I just read over this and am shaking my head. Do I publish or do I delete? Do I edit or do i leave as is? Well, I publish and leave as is. These are my feelings right now and this is a way for me to vent them out. So, you ask, how I’m feeling. I’ll tell you, I am not feeling anything…
Making it Through the Rain 