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Holy elephants Batman, which way is up

Right now it is 2:45 PM on Thursday. I just woke the hell up. I guess it’s better than yesterday when I woke up at 3:30 PM. I went to bed at reasonable hours both nights but my body just does not want to wake up. Maybe it’s because I know what it’s waking up to.  Maybe after all this time I’m just sick and tired of dealing with it. I’m just not quite sure why it all is hitting me so hard right now, but it’s  it’s as if the light at the end of my tunnel is a locomotive coming right at me. I’ve been searching my mind as to why everything is hitting me so badly and I cannot figure it out. Nothing has really changed in the last 4.8 years of being completely bedbound, fuck it the last 5 years ( yes I am rounding up ) to make me feel so lost right now. Or maybe that is the problem, that nothing has changed. I am a grown ass woman who has never been afraid to speak my mind, tell it like it is,  or go toe to toe with someone who is a complete dickwad. 😈 But, this piece of shit MonSter that is MS is a different kind of enemy.  It is very sneaky and it takes away from your soul not just your body. It not only affects the recipient it affects everyone around them that loves them.

 I really am trying to find that blessing. It just seems so out of reach. I know everyone says that I’m lucky because I have the gift of life. And believe me I completely understand that. But is living in a bed every day, every night, every week, every month, really living?  I don’t think that people understand that this part of my journey is not going to change.  I can’t do any of the treatments so I’m as will continue doing what it does and it will continue to progress. So what does somebody do with that? How do you find that blessing knowing that the help that is out there now for your disease, you are not allowed to do. So I think I just have to say fuck it  and be like cookie monster and when it’s unpleasant just eat the fucking cookie. A medicated cookie but you get the idea. 😉
 Tomorrow is my pain management appointment with Dr. Nasser. Once a month like clockwork. I have a list of things to ask and the way I’m feeling I’m pretty sure I’m going to end up being a little forceful when I ask. By forceful I mean I will probably be in tears begging for someone to help me. 😭  Yes, ugly tears. I’m already scared to death to go because I know how bad the pain is going to be when I’m lifted in that Hoyer lift and put in my wheelchair. Hell, just rolling me over to fix my clothes and get me in the lift sling is Is making me sick to my stomach. Fuck fuck fuck you multiple sclerosis!

A little bit of advice before I go… If you yourself have MS and are still able bodied, make a list of everything you want to do and do it now! Don’t put anything off because people with our illness we have no idea what the next day will bring. And if you’re Normie, a person with no afflictions, the same goes for you. Make a list and do the things you want to do now, because even though you don’t have an illness, shit can happen  in the blink of an eye. So do what you want to do now. Please  I beg of you, don’t put it off for another second.

 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.
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 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!
health · health insurance · hope · medications · multiple sclerosis · strength

Multiple Sclerosis: Hope on the Horizon

Ampyra

Is this the medication I’ve been waiting for? The one to give me hope?

In a nutshell, this medication helps you regain leg strength. Click on Ampyra above for the full description of this medication.

My MS counselor told me about a woman with Secondary Progressive MS who is taking this. She is walking again. At this point she is re-learning how to walk. Funny thing is you do forget how to walk. When I used to use my walker I had to remind myself how to move my legs right. So, it seems this medication may work for all types of MS. I have not heard any stories for Primary Progressive, so maybe I can be the first!

Now, I do not expect miracles. Even getting back some leg strength to be able to transfer easier would make my day. Hell being able to get into bed on my own would be amazing!! So, I have a call in to my Neurologist. I am hoping he will call me in a scrip for it. We have talked about before, but I needed to do my own research on it first. This time I am not going to let side effects cloud my decision. If I get any, I will discontinue using it.

————————-

Now, here’s the ‘nothing comes easy for me’ part. My left knee hyper-extends 20 degrees backwards. This cause lots of pain and torn meniscus issues. I had surgery some years ago to fix the tear, but last year was told it was torn again. I have not had surgery as it will keep happening if they do not fix the problem causing it… the hyper-extension [ligaments in the back of my knee are shot].

Problem, no orthopedic will do it. Reason, I have MS and am in a wheelchair so why. The insurance companies will not cover a knee replacement on a cripple. So, if I get leg strength back, what will it matter as my left leg will hinder walking for me. Now they have offered me braces. Have you ever worn a knee brace to stop hyper-extension? They are bulky and they hurt. Thanks, but no thanks. Since I’m not some sports figure I guess they figure why bother. Well I’ll tell you why…

I deserve quality of life just like anyone else. I deserve the same surgeries for this problem just like anyone else. One sports orthopedist told me that this surgery might keep me down, maybe six months, unable to move much. I about pissed myself… REALLY like that will be a big change for me. The end result might be I am able, with the Ampyra to walk again, even if I still need walking aids. I held myself together and when we left that guy and got in to the car, I cried. It was the same from the doctor that did my knee surgery.

Why doesn’t anyone give a shit about us? Why are people with disabilities treated like second, shit third class citizens? Why don’t we deserve the same chances? I’m 46 years old, I have many years left, why won’t they help me?

I am going to go back to my knee doctor once I start the Ampyra. Maybe if there is progress and he sees progress he will re-think the surgery. Oh, I have some swamp land to sell you too… notice my subtle sarcasm! rofl

I am the squeaky wheel kind of girl though. And this will end up being my new project I’m sure. Wait’ll they get a load of me…

Blessing and Hope!

Depression · friendship · lonliness · mindless-thoughts · Pain · Ramblings

What’s the point?

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…

Blessings and hope!