Family · Loss · Love · Multiple Sclerosis · Primary Progressive MS · Ramblings · Sadness · Strength

In Memory – Will Herberts

Will was one of those people that you just wanted to have as your friend. No matter how awful his multiple sclerosis was treating him, he smiled. He always had a smile for everyone and a motivational word or two. His passing left so many of us in tears. We were just becoming good friends when he went on his next adventure. When people say multiple sclerosis doesn’t kill you, they are wrong. If he did not suffer from MS he would not gotten the infection that landed him in a nursing home.  He would not have become septic, and he sure as hell wouldn’t have ended up with bedsores. He did die directly from his multiple sclerosis.  I think the part that is hard for many of us is that while in the nursing home he suffered from bedsores. That is something that should not happen when you’re under 24/7 care. 😢

The best thing about him is he always smile no matter how bad he was feeling. He always had a kind word for everyone that he met. he definitely was “Wicked Smaht”!! The world lost an amazing person the day he died. What I loved about him the most is that he never had an unkind word to say about anyone. He was just always there when you needed him. Thank you so much Will for being you. You touched so many lives and we miss you so! You truly were an MS Warrior! I know wherever you are you’re making everyone laugh and feel better. Love you! 😘

Just look at his smile! That is who he was!

Have courage and be kind.

Family · Health · Hope · Multiple Sclerosis · Primary Progressive MS · Ramblings · Strength

I am so proud of you!

It’s been two weeks and one day since my suicide attempt. I’m still on that high but I have had a couple of lows. My husband helped talk me through them and I’m utilizing my tribe. I have the suicide hotline phone number ready to go on my phone, and Alexa will call them for me as well. People think it’s easy to just, get over things. For some it is, but for some of us it’s not. All we can do is live day by day. I am actually living minute by minute right now. I have been known to self deprecate and that is something I’m trying to stop. I am an awesome person, a great mom and wife, and a fierce friend. I am very proud of myself right now for holding it together when I’m ready to fall apart. I am really hoping for better days. I am hoping to get out of this bed at some point. I just have to let go of my past and who I was and learn to love the person I’m becoming. It’s a process and a pretty hard road, but I’m going to keep going forward.



Have courage and be kind.

Family · Ramblings

Mom, you can do it!

Gatorade bottles and their caps are so hard for me to remove. When I got home from the hospital, Roger purchased some Gatorade for me to rehydrate. My daughter handed me one and I asked her to open it for me. She simply replied, “mom you can do it.” I explained, I can’t as my hands don’t work that way anymore. BTW, I am left-handed and that is the hand where I have bad contractures in the fingers. I kept telling her that I cannot do it. She kept telling me to try and yes I can. I started getting frustrated because my left hand was not able to grip it hard enough to open. So I kind of held the bottle with my left hand and switched it out to my right. After a few awkward turns and a lot of cussing, it opened.  I was tickled. It’s been a very long time since I’ve opened my own bottle of anything. So thank you to my wonderful daughter for pushing me to do something I kept saying I can’t. Now I know that I can!

Have courage and be kind.

Family · Quotes · Sadness · Strength

In Memory

My brother-in-law passed away suddenly. He leaves behind his beautiful wife and his little girl. I can not imagine the pain my baby sister is feeling. If you pray, pray for those he leaves behind. Send thoughts and blessings for strength. He was a big kid, he was funny, and he loved my sister and their beautiful daughter with everything he had.  The world is a little bit darker without him in it.

Hold those you love close as we just never know…

Have courage and be kind 

Donald Keith Aymar 6/7/72 – 2/15/20 ♥️

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 · Family · Hope · Love · Multiple Sclerosis · Primary Progressive MS · Ramblings · 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 · 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!