Celebration · Christmas · Family · Holiday · Hope

Merry Christmas 2018

 To all who celebrate I hope this holiday finds you happy and feeling loved. I wish you all a very Merry Christmas! ♥️🎄⛄️

 Have courage and be kind…

Celebration · Christmas · Family · Happiness · Love · Multiple Sclerosis · Music · Primary Progressive MS · Strength · Stupid Stuff

Holy Christmas balls Batman!

I had a great weekend! My step mom, who is more like a mother to me, and her husband came down on Saturday for our family Christmas. It was wonderful! I spent the first part of Saturday in my bed so we all camped out in my room and then when we were ready to eat, Roger got me up in my wheelchair and we actually ate our Christmas dinner at the table! You have no idea but that is a big deal. LOL The only issue was the fact that my Wheel-Chariot, even at its lowest position is still a bit high for the table. But thankfully I had my little tray so I got as close as I could to the table and used my tray for my food. She makes thee best mac & cheese ever and the best salad dressing. I was in heaven!  It felt very nice to feel normal, whatever that is, for that day. 🖤 Last year my daughter hung a string of lights around the walls of my bedroom and they brought me a beautiful lighted Christmas wreath. My room looks so pretty at night now! Festive and fun.

I also got an amazing “train case“ for my make up. I subscribe to Boxy Charm, so I get a surprise box every month of make up  and other fun things. It may seem frivolous or even stupid for me to do this because of the fact that I’m stuck in my bed, but for me it’s just fun and gives me something to do other than watching television. Although, the television is still on in the background. LOL Basically, it keeps me off the streets! 😂🤣

I hope this Monday finds everyone well. ♥️

Have courage and be kind!

Animal Rescue · Animals · Family · Hope · Love · Multiple Sclerosis · Pit Bull · Primary Progressive MS · Ramblings · Shelter Dogs · Strength

Furbaby Love

I just thought I would share a little bit of what makes me smile every day. My children with paws 🐾

Clockwise from top left: Soloh, Charlie (girl), Gatsby, Zoe (kitty),  and Dexter Morgan.

🐶🐶🐶🐶🐱

Soloh. She never leaves my side. She actually saved my life. 🧡Pittie-mix the best dog you could ever love.

All rescues, as in my mind, rescue IS the only breed!

This handsome bearded dragon was Stewie.  He is and will always be the only bearded dragon I will ever love. 😉 He was awesome!

Animals are forever! They love you unconditionally and they should always be treated like family. I am against breeding as I believe until they all have a home it should be stopped. There really is no need for designer dogs. So please, adopt, Don’t shop! I know breeding will never stop completely but until we can clear out the shelters and stop the murder of so many healthy beautiful animals we need to rethink breeding for the time being.  And, FYI, you can find many purebreds in the shelters and breed-specific rescue’s. So there really is no reason to go to a breeder.  I will now step down off my soapbox. 😂🤣

Mwahahaha

As always, have courage and be kind!

 

Craziness · Family · Fear · Health · Multiple Sclerosis · PAIN · Ramblings · 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 · Darkness · Faith · Family · Fear · Health · Hope · Multiple Sclerosis · PAIN · Primary Progressive MS · Quotes · Ramblings · 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!
Craziness · Darkness · Dreams · Faith · Family · Fear · FUCK · HELL · Hope · Love · Medical · Multiple Sclerosis · PAIN · Primary Progressive MS · Quotes · Ramblings · RANDOM · Sarcasm · Strength

Positively unsure…

I’m positive that I’m unsure about everything right now. Day in and day out I lie in this bed and wonder if things are really going to change. When I say being positive is new to me, it’s a true story. I never realized that it’s very hard to keep a positive attitude. And when your life takes a turn like mine took two decades ago, it’s fucking hard. When I found help on February 23, I believed my life was going to change for the better. I’m still hopeful, but it’s much harder than I thought it would be. While I can move my legs and feet a little bit, I still am unable roll on to my side. I cannot sit up without something supporting my back. As I sit/lie here all I have this time. I’m looking at this blank page before me with tears in my eyes not even sure what to say. I miss the girl I was. I’m so angry at everything and everyone and at nothing and no one. Half the time I don’t even know what I’m saying or thinking anymore. I’m alone and I’m lonely but I don’t want anybody around me.

Most days I just want to scream at the top of my lungs for no apparent reason. The highlight of my day is watching the hummingbirds drinking the glorious nectar that keeps them going. Sugar water, go figure. I can stare at them and keep staring praying that they won’t fly away too quickly…

Is it so wrong two want to escape from this prison that is my body? I don’t want to sound negative or sad but nothing really is changing. We can’t afford a caregiver and I can expect my family to spend every free minute they have aside from what they’re already doing to help me. The whole physical therapy aftercare is a fucking joke. I can only call so many times without a return call. And in reality, if they do call I have no way to get there… So does it really matter. My husband cannot keep taking off as much work as he already does take care of me. My kids work and they shouldn’t have to take care of me. They have done that their whole lives already. And then there’s the pain… the pain that never goes away. The physical and the mental pain Is exhausting. I’m trying so hard to stay strong to keep that positive light flowing.

No one understands that when just sitting like a normal person causes so much pain, it makes a person not want to get out of the bed. The minute my hips go to the proper sitting position the pain latches on and won’t go away. My legs have plopped the side [frog legs] for over four years [11/2013] and when my hips rotate it’s excruciating. Pain meds, muscle relaxants, cannabis, CBD, nothing stops it. I’ve l earned to grit my teeth, quietly let the tears flow, bare it, and warrior on because I have to! I have orders to get ultrasounds on my legs to check for clots, an order to have x-rays of my hips and lower back to check for arthritis aside from my degenerative disc, an order for a mammogram that I’ve put off for the last 2 1/2 three years. Breast cancer took my sister from me I miss her so much…

And I digress. So as I said, I have all of those things I need to get taken care but have no way to get there. I know that my husband will take another day off work to get me to these appointments and that is why I don’t want to make them. It’s also going to suck big hairy donkey balls because of the pain that’s going to happen when trying to get me out of my wheelchair to lie flat for the x-rays. I hope they have some strong men working that day and maybe even a chaser of morphine.

On the outside looking in people probably think I’m lazy. Although I don’t know how I can do much more from my bed. I fought for the last two decades against MS and it didn’t change a thing. I Just kept progressing to where I’m now. But don’t worry, I’m still going to fight and do what I can from this bed to keep going.

I’m going to put my arm weights on every day and do my exercises. I’m going to have my family help me move my legs when they get a free moment. I’m going to keep moving my legs as much as I can even if it is only a little. I know right now I can’t move them very much, but with hard work it can only get better. Or it won’t. But even in the dreary depressed mood I am in at this moment, I will never quit. I will never end up in the hospital again after trying to take my life. [2/2017] I will never end up in the hospital again contemplating taking my life. [2/2018] Because what that month of physical therapy DID give to me was a glimpse in to what might be. I know now I was just a body in bed but while I was there I learned the tools to better myself. I have all the paperwork showing the specific exercises; I know what to do. And even if nothing changes, no one can say I didn’t fight and fight hard! One thing I learned and I’m still learning is there truly is something beautiful in every. I didn’t see that before. That’s how I make it through now. As I’m reading through this I’m not even sure what I’m trying to say. But, I’m in here and I’m saying it and that alone is strength.

Have courage and be kind.