Have courage and be kind.￼
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 ♥️￼
Short and sweet. Have courage and be kind!￼
Have courage and be kind! 🖤
#MSWarrior #TheBedriddenLife #MultipleSclerosisAwareness #MarchIsMultipleSclerosisAwarenessMonth #PPMS #WeNeedACure
Even when it’s not OK… It’s just easier. Either way I don’t like telling how I’m feeling because it’s just too depressing.
Right now not much is OK. We think that I may have a possible fracture in my right hip from when we were doing my leg exercises. Our doctor appointment with the pain management doctor was today and I couldn’t go because the moment I’m rolled over to get in my Hoyer lift the pain is just too much. So I was hoping that the pain management doctor would possibly help me by getting an ambulance to pick me up get me to the hospital for x-rays. I guess they don’t do that. He really wants me to get to the hospital but there’s no way he can help me do it. Unfortunately we cannot afford an ambulance bill because our insurance thinks they’re out of network. AMR charges about $2000 a trip for a 4 mile drive. Now eventually my insurance pays for it after I appeal it one or more times. I’m tired of having to do that every time so it’s just easier not to get the ambulance. Then if I go to emergency the emergency room doctors are always out of network, so I have to fight the insurance company again. And usually for a two minute interaction with the doctor it’s anywhere from $1600-$2400. I am so fucking tired of having to fight every time.
So now I don’t know what I should do. I’ve been let down time and time again by these doctors out here say that want to help me and then just passing the buck or don’t go out of their way at all to help me. All my pain management doctor had to do was make a phone call but I guess that’s not his job. Who knows maybe things are different now… the way our country is going right now everything is fucked up.
So now I am going to try and find an ambulance that takes my insurance because I know AMR does not. But then I run into that catch 22 of having to deal with the out of network doctor at the emergency room. I just can’t fucking win. 😳
There was an article about another celebrity and her anxiety due to her multiple sclerosis. Now while I feel horribly bad for anyone being stuck with this disease celebrities will never know the real struggle. They will never know what it’s like to not have money for help. They will never know what it’s like having doctors drop the ball on them because they can afford the good doctors. So yes I feel very bad for anyone with this disease, but please if you’re a celebrity don’t act like you know the struggles and how hard it is. You have the luxury of being able to get help. I know I sound like an asshole and bitter, but if I were a celebrity I wouldn’t have these issues.
As always you lovely people… Have courage and be kind! 🖤
So this post might be a little long. And you don’t have to read I’m just trying to get out what I’m feeling. We are going to attempt a shower today and I’m already having anxiety. But I have to do it because PTA bed baths are not doing it for me. 😋
I just don’t want to roll over or get in that fucking Hoyer sling. It hurts so much even when I have a nice supply of cannabis on board. 😉
Some of you know I have another fracture in my back at L3 and I was supposed to see a spinal surgeon like last month, but I can’t. I don’t want to go because I don’t want to get up. And the worst part about that is, I really want to get up! I know that does not make any sense. LOL
Without help I don’t know how I’m going to ever be able to get out of this bed. But, I will keep doing what I’m doing like wiggling in the bed LOL I have some serious dance moves for someone who is in bed. 💃🏻 I just want out of it. But when I’m lying down or even when my legs are up and I’m elevated I don’t have any pain. So thankful for my adjustable bed. 🙏🏻 The minute someone moves my legs I literally want to die. It feels like my hip is going to snap and my leg is going to fall right off. Sounds like something out of a criminal minds episode. Childbirth wasn’t as painful. I will take a contraction over this any day. 😳
We rolled a couple of pillows and taped them and put a cover on to jam them on the outside of each leg to roll my hip as I’m lying down. Oh holy man! The first day I could only tolerate about five minutes because the pain was intense. But yesterday I actually kept them there for a few hours. I’m hoping that eventually I will be able to get my legs moving without pain. I don’t care what the doctors say and what my MS is going to do with me because I know if I can get rid of this pain I will be up again. I may never walk again but I will be able to transfer if I can just combat the pain. And thanks to my colostomy and urostomy I won’t have to worry about running to the bathroom every five minutes anymore. 😂 Statistically the odds are against me but I’ve never been a fan of statistics. LOL Do not tell my daughter that because that is what she graduated with honors in. 😜
I’m putting on my little arm weights more because I totally slacked off on doing my arm exercises because depression hit it once again. But my little inner child showed up and beat the crap out of depression. Hopefully it’ll stay away a little longer this time. 🤞
When things got really bad after my surgery in 2014 and I completely fell into a very dark place. The surgery almost took my life and at that time I wished it had. I think a lot of people thought that it was getting to the point where I was nearing the end. I felt it, I even had a doctor tell me my outlook was grim. It wasn’t until February 2018 that I woke up. That anniversary is coming up and it scares me. But it also reminds me that I can fight and can get better. I just want people to know don’t give up on yourself no matter how bad it might be! I have been to the depths of hell and I’ve tried to leave a couple times. For some reason they didn’t want me. LOL
Well now that I’ve written a book and I probably lost most of you after the first paragraph I am going to get myself pumped so I can take my shower and not be afraid. 💪👊
I’ll be back… Said in my best terminator voice. LOL
Have courage and be kind!
Most people at this time of year are thinking about their New Year’s resolutions getting ready for all the new things to come. I’m lying here completely lost… I feel like I’m in the twilight zone. This year my house was not decorated for Christmas and it was actually just another day. The holidays are not the same for me anymore because I can no longer get up and get my home decorated and make it feel Christmasy. I’m telling you the Christmas times when I was better my house was decked the fuck out and looked awesome! Oh how I miss that!
I’m just void of emotion right now. Like everyone on the planet none of us knows what tomorrow will bring. Although I do know… It’s just going to bring more of the same of me lying in my bed looking around at my four walls wondering why I’m even here anymore. What is my purpose? What is the point of life when you can’t live it. I know I’m blessed that I get to wake up every morning… But that’s about it. I wake up and I have a couple choices; watch TV, play on the computer, watch TV, play on the computer… you get the idea. 😉
I’m not trying to be a Debbie downer I am a realist and quite honestly I hate being a realist. I never was until this piece of shit disease put me in this bed for the past five years. And before that put me in a wheelchair. I’m angry, just like I mentioned in a blog a couple of days ago. I don’t know how to get rid of that anger. I look around and I see a lot. I watch people complain about every day issues like not having enough time in the day to get their kids wherever they need to be or to grocery shop or clean their house. What I wouldn’t give to have those issues. My wish for people is too slow the fuck down and see the beauty around you because quite honestly it could be taken away from you at any moment. A dirty house is a beautiful thing because it means it’s been lived in. And having to run around and take your kids everywhere isn’t a chore it’s a blessing that you are able to do it. I know that I took so many things for granted and I wish I could go back and spend time on certain memories and open my eyes more and be more present. But you cannot go back so please I implore you, be present and if there’s something you want to do do it now. Because one day you may not be able to and I guarantee you will have so much regret. And trust me, regret is paralyzing!
I’m not sure how much more of a fight I have left in me considering there’s nothing for me to fight with. There are no medications I can take so I just have to pray that my MS will be kind to me and not keep progressing. OK I’m kind of laughing at that last sentence because I am primary progressive so I know that it will keep progressing… I’m just asking it to slow down a little bit. LMAO I really wish that MS were a person because I would beat the living hell out of it.
I think the worst part about being trapped in a bed is the loneliness. Nobody really wants to sit in your room with you whole are you lying in your bed, even though I’m funny as hell and quite enjoyable to be around. 😂 I really am! If it weren’t for my beautiful doggies I honestly don’t know if I would still be here. I can’t expect my family to constantly hang out with mom. They have their own lives. And my husband cannot spend every waking minute in here with me either. Everyone complains that my room is so cluttered and I really should throw things away. I don’t think they understand that this room is my whole life. What they see has junk and clutter are things that make me smile. Stupid things like my living dead dolls or my Lucy collection, my lava lamp, etc. Things that to someone else wouldn’t mean anything but to me they mean everything because they are all that I have! 🖤
So please, for me, do me a favor and instead of making resolutions just make a promise to yourself to be present for every moment that comes your way. It could quite possibly change your life.
Have courage and be kind…