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! ♥️

 

anger · boredom · confession · Darkness · Depression · Faith · family · Fear · health · healthcare · hope · lonliness · multiple sclerosis · Pain · primary progressive MS · Quotes · Ramblings · sadness · strength

Bedridden…

bedridden

[bed-rid-n]
1. confined to bed because of illness, injury,etc.
——————————
 I’m not sure what’s going on right now. I am starting to have a hard time being confined to my prison that is my body. It’s now been four years and eight months that I have been in this bed 95% of the time. I think I’m going a little mad. 😳 More  so than normal. 😉 There are so many things that need to be done in my home and it’s making me crazy that I can’t do any of it. And with this finding of my fracture of my back at L1 my mind can’t stop thinking.  Is that fracture what caused my legs to completely stop working or is it the MS? The doctors say there’s no way to tell. Will that fracture make it so I’ll never be able to stand or transfer again? That’s a question I completely forgot to ask at my last pain management doctor appointment. I could just hit myself for forgetting to ask that question. But when I’m there I am so confused and I don’t feel like they even care about it. I mean why should they, right?!
 Is it completely futile to keep trying to move? I woke up this morning when my alarm went off and slept right through it. My thoughts were, what’s the point?  I might as well just sleep because I can’t do anything else.  Around noon I woke up, raised my bed, and my son brought me coffee. I did a few things around Facebook and then came in here to write this blog. I don’t even know what I’m trying to say. I have so many ideas in my head of things I wanna do to help my family. But then reality hits and I can’t really do much to help anyone. I can’t even help myself. I don’t mean that in a pity way. I literally cannot do things for myself. When I talk bedridden that’s exactly what I mean.  Maybe bedbound would be better because I am bound to my bed. 🤔
 I think the part that makes me crazy is that I know what needs to get done in my home and there’s no way to get it done. My kids work, my husband works 50 hours a week and has a three Hour round-trip drive – sometimes more depending on traffic. We can’t afford someone to come in and clean and help me, so WTF! 😥  Even on the rare occasion that I get up in my wheelchair to go to a doctors appointment, I can’t do anything around the house because the pain is so paralyzing.
 The one thing I cannot stress enough people, is if you have the chance to do something and you are able, do it! Don’t wait.  I guarantee if you do you have regret for the rest of your life.
  I know, I’m kind of all over the place with this blog because, as I stated above, I’m not sure what I’m even trying to say. I’m working so hard about keeping a positive attitude.  There are days when it’s very hard to do so. I know that right now I’m just having a  few bad days and it’s not a bad life.  Right?
 I’m trying, I really am!  I’m just waiting for the universe to cut us a break. We need help and I’m not sure how to get that help. I’ve always taking care of things even from this bed and now I feel pretty hopeless and helpless. But, I truly am a warrior, and I will fight and I will find a way for my family if it’s the last thing I do! And the reason why, is because I’m the mommy!! 🖤
 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 🖤

 

boredom · Craziness · hope · joy · love · mindless-thoughts · multiple sclerosis · primary progressive MS · Ramblings · RANDOM · sadness · strength · stupid_stuff · Wheelchair

Sofa King Tired!

Randomness:

I went to the doctor last Thursday. After the doctor we went to Walgreens to pick up my prescriptions and then we went to get something to eat. I’m still exhausted from that day. I’ve had two in home physical therapy appointments and the pain is intense. Nevertheless, I got through them both. On the days where I feel like I just can’t go on, I just want to stop everything. I ask myself why I’m doing this as I know it’s going to hurt. I start to second-guess myself. I truly am my own worst enemy!

So, instead of quitting, I push on. I remember why I’m doing this, and that makes me focus.

Just had a surprise shower after PT day 2. [not my normal shower day] I am back in my bed resting and re-charging for tomorrow!! Peace out … for now!

Have Courage and Be Kind

anger · Animals · boredom · confession · Craziness · Darkness · Death · Depression

Just lost my freaking mind…

 

This cat, Zoe. I rescued her from the pound eight years ago. I knew I wanted to get an older cat and not a kitten. Zoe was two years and old she had been returned twice. ( now I know why ) They handed her to me in my wheelchair and she immediately crawled up under my neck and started purring, she was the one. The second I got her home, and lifted her out of the box, she gave me one look, and ran off towards my daughters room. I pretty much have not seen her since. LOL

 So today she comes in my room and won’t even look at me. I’m calling her name she literally won’t even look at me. She has no idea that all she has to do is be friends with me and she’ll have EVERYTHING! 😊 I’m rattling some crinkle paper to play with her, she won’t even look at me. My husband calls to her she looks right over him, my other daughter comes in she goes right to her. What the fuck is wrong with this cat. LOL all the animals love me for god sake‘s! LOL ( A lot of LOL‘s ) because it’s funny  and I’m funny! 😂

 So, back to the story. After she ignored me for five minutes I looked at my hubby and started sobbing. He looked at me and said that it’s OK, she loves me she  is just hungry and wants one of them to feed her. That’s why she’s ignoring me. But it wasn’t even about the cat. #ItIsNotAboutTheCat We know that. I literally can’t stop crying right now.  It’s not like I even feel sad it’s just, I don’t fucking know what. I’ve been trying to be so positive and up beat and it’s actually killing me. Because I’m not happy!

But everybody wants you to find the good and to always be happy. And, as usual, I’m doing everything  everybody else wants me to do.

 Why can’t we be sad sometimes. Why is it so hard to just let others vent. Sometimes when we lash out or vent what’s hurting us we don’t expect you to come up with an answer. We just want to feel like somebody cares, give us a hug, a kind word. Personally people that are always shiny happy upbeat make me really fucking nervous. You know they’ve  got secrets and stories they’re hiding.  And if you say they don’t, you’re really naïve. But OK, I’ll go back to make everybody else happy. Isn’t that what everybody wants?

Peace ✌️

boredom · Craziness · Darkness · Depression

What a feeling!

 That feeling of comfort… That feeling of no pain…

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.

Peace ✌️

 

 

 

 

anger · boredom · confession · Darkness · Death · Depression · falling · family · FUCK · health · healthcare · HELL · hope · lonliness · mindless-thoughts · multiple sclerosis · new year · primary progressive MS · Ramblings · RANDOM · sadness · sarcasm · strength · stupid_stuff

Happy New Year 2018

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 I guess it’s better late than never. 2018… The only change for me will be that I will progress. I’m a realist, I have to be. I still hope every day. Yet, hope can become very paralyzing.  As most people now, I was diagnosed in August 1997. My second opinion specialist said it began in 1986 and that I am primary progressive. In reality I’ve had this my whole life. I was genetically predisposed for it. I can look back and see issues I had from the time I was little and through my teen years into adulthood. It lay dormant for a very long time. I guess when it showed up, it needed to make itself known by literally taking away everything I held/hold dear.

But, seriously, what you gonna do? I literally can’t “do” anything by myself.  I try to keep A happy face because nobody wants to hear the truth. And that’s OK, I probably wouldn’t want to hear it either. So really, what are you gonna do when you end up like this. Basically you just have to take it. I cry so much I could end the drought. 😂  No, seriously, I could. LOL You just have to find the humor.

It’s just that some days there is no humor to be found. It’s been four years and three months now that I have been confined to a bed. I get up for doctors appointments and for showers and that’s about it. The pain is so intense that if I sit for too long… I’m better off in bed.

That’s all I have right now. Happy fucking new year! I’ve just got nothing.

Peace ✌️