Lying in the dark.
Lying in the dark.
TGIF bitches! Technically Friday doesn’t mean much to me. My days all roll into one. I have to look at my iPhone calendar every day so I know what day of the week it is, as well as the actual date. The only good thing about Fridays is that my husband is home on the weekend. OK sometimes that’s not a good thing. OK OK I’m just kidding. (or am I) 😈￼
This past week has been pretty uneventful. I did have a couple of really good meltdowns. Quite frankly sometimes they really do help. ￼I spend my days playing in Facebook, putting my headphones on and cranking up my music as loud as they can go, reading when my eyes permit it, ￼and of course television. I have pretty much every channel and streaming service known to man. Even then most of the time there’s nothing on. I keep my TV on all the time. Mostly it’s for background noise so I don’t fee so alone. But there really is only so much of the idiot box you can watch before you go absolutely insane. I stay away from the news channels for the main reason I cannot stand listening to the orange guy in the White House. Every time I hear him speak my IQ drops a few points. I prefer talking to my dog. The conversation is much more intelligent.￼￼￼ there you have it… I don’t talk politics on here but now you know how I feel. Sorry, not fucking sorry at all! ￼
Now I am going to get lost in Bridget Jones’s Diary￼. ￼￼￼To all reading, I hope you have a wonderful weekend! As always, have courage and be kind!￼￼
This GIF popped up on Facebook and when I saw it I felt empty.￼ I decided to post it because it really does sum up my life. I have been trapped inside my decaying body for approximately 6 years 2 months.￼ It is actually a bit more but I removed doctors visits, visits to the store before my surgery in June 2014, and the occasional visits to my dads. In that time it equals to approximately 28-30 days that I’ve been out of my bed. I don’t know how it happened. What I mean by that is, I don’t know how it got so bad. October 10, 2013 I fell. I was transferring to go to the bathroom, and as I stood up my legs went limp like cooked ￼noodles.￼￼ They did no x-rays at the hospital that I can remember, ￼they just really chalked it up to MS. The hospital and my doctors knew that I was unable to stand sit up, pretty much paralyzed from the waist down, ￼etc. They did the Solu-Medrol bullshit which did nothing for me. Then they basically sent me home with no real after care.
This is where I don’t know how it all happened. The fall definitely started it, and then I go blank. The depression I remember was paralyzing just like my body. Then in a weird whirlwind of doctors appointments the next thing I knew I was scheduled for colostomy and urostomy ￼￼￼surgeries for June 10, 2014. Was this medically necessary or was it done to make it easier for everyone around me? I don’t really know anymore￼.
Why wasn’t I offered acute rehab? Why wasn’t I offered in-home nursing care? I don’t know! 🤷🏻♀️ ￼I do know that a friend, an RN, had to come to my house to catheterize me so I didn’t piss my bed every five minutes. Not sure why my doctors or the hospital didn’t do that for me. ￼I also know, looking back, that I was completely fucking lost. I have never been someone to lie down and be stomped on, but I guess I could not find my strength back then. The surgery, for me, what horrific. ￼￼￼￼ and the next couple of years were literally lived as if I were in a dream.I will fast forward to now, because I don’t have the energy to really talk about it much more. All I know is I am trapped in a body that is destroying itself from the inside out. Since I was denied rehab August 18, 2019 my body is deteriorating more and more. i’ve exhausted, in their mind, all appeals. DENIED!! 🤬 ￼ Because of this, my ￼legs are becoming more contracted. Independence Blue Cross basically feels it’s not medically necessary for me, acute rehab! Because their doctors I guess are my doctors now and they know better. Are they fucking kidding me! I’m the fucking poster child for acute rehab! Here is a link of what is happening to me and what I sent to the insurance company thinking they would actually understand it and help me. ￼￼Bahahaha They either cannot read or they just don’t care. I’m going with the latter. ￼People are telling me I should contact news agencies, attorneys, etc., but the places I’ve contacted obviously don’t think that any of this is wrong. Either that or they’re just scared to death to take on Independence Blue Cross. I guess in the world we’re in right now it’s OK for companies like this to throw away the disabled, people with chronic illness, because we are the people no one really gives a shit about.￼￼￼￼￼￼￼ And quite frankly, I’m tired!!! I have no help whatsoever! Mentally, physically… Nothing. ￼
I am 100% in prison for crimes that I have never committed. The prison that is my body and the four walls of my bedroom. There is only one or two people that completely understand what I’m going through that I know. And when other people say, they know what I’m going through, they completely understand, yet that person/persons are shown standing up in pictures and going places with family… no, you have no fucking clue what I’m going through. And you should be really fucking glad you don’t.￼￼￼ If I were able to even stand up I would never be in this fucking bed. So please don’t talk of things of which you know nothing about.￼ You may share my illness but you don’t share what’s happening to me.￼
What I hate the most about all of this is the person I’m slowly becoming. I really do believe I’m going to little mad, I can no longer see the light at the end of that tunnel, and I’m not sure why I even bother anymore. Yes it’s a new year blah blah blah… but for me there will be no changes.￼￼ AND I am NOT being pessimistic, I’m being realistic! ￼ I will add that you don’t need to worry people, I’m not gonna kill myself, off myself, end it, whatever. Do I think about doing that every fucking day… Yes I fucking do! But, I won’t and believe me it’s not for the reasons that you are probably thinking. And now, I think I’m done for the day and I think I’m going to medicate so that I don’t care what’s happening to me. And for those of you that act like I’m a stoner or something, fucking A right I am!￼￼￼ Cannabis isn’t going to kill my kidneys or my liver like Norco and Xanax and all the other drugs they want to put me on. So yeah I love my weed. And to anyone that says that’s bad for you or it’s addicting or it’s a gateway drug, educate your stupid ass! Or better yet go pour yourself another drink or take one of your sleeping pills and then talk to me. OK I’m getting off base and I’m starting to get pissed so I’m going to end this for today.
So are you loving my new unapologetically me yet?
As always, have courage and be kind!￼￼￼￼
Thank you to Greg my friend from an amazing MS support group, We’re the Fucking MS-kateers. (link on the sidebar my favorite place)
This is so true. Coffee first, questions later. 😂 That is, if you want to live. LMAO
Please remember especially in the times were living in now, have courage and be kind!
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! ♥️
Believe me, it’s not as glamorous as it seems. Now, if I had Gerard Butler fanning me and feeding me chocolate covered strawberries, that would be okay!!
The reality is not so lovely. Hubby says no design table or being out in the front until my legs stop swelling. I know he’s right, but I’m not happy about it. My mind is clear, but my body is in pain. This is when it sucks to be me. Mentally I can do anything, but when the body won’t cooperate it’s no bueno! 😦 There are only so many movies to watch and books to read. I’ve heard it said that only boring people are bored. SORRY, but that is bullshit! My boredom comes from my MS and being trapped in my own body. In my mind I can get up and go, my body says nope!
It’s during these times when I have to find my inner strength so I don’t fall into a deep depression. Finding it sometimes is a hard thing to do. Eventually, it shows up…
So, here I am in bed, with my MAC [only link to the outside world], my TV, and 3 of my fur-babies lying all over me. I guess I should be happy…they are actually sharing THEIR bed with me! 😛
So, it’s Monday. Here I sit wondering what to do. Hubby at work, kids at school, mommy home.
Sometimes the hubby will call from work and ask me what I am doing. My response, me being me, is always something a tad sarcastic. Something along the lines of, “Oh, just got back from running a marathon and I’m spent!” I will admit, sometimes it bothers me. I mean really, I can’t drive anywhere or do much, so what does he think I’m doing. 😛 I know he means well, but…
Then there’s the fact I have a great hubby and children. I know this, but when they act like martyrs, it gets to pissing me off. I know they all help me, I know I’m crippled, please do not rub it in my face. I know how much they do with working, school, coming home, shopping, etc., but don’t throw that in my face when you get a stick up your ass’. That’s when I feel crippled. I know you all work hard and sometimes it gets to be too much and you all feel like you cannot get it all done. Let me tell you, it’s the same way I feel about my job, mommy/wife. How do you think I feel that I cannot get much of anything done? Just struggling with the dishes make me exhausted. I HATE not being able to the best mom and wife ever. If I had not gotten sick I would be the best!! My heart breaks every day. When you all make comments under your breath [chicken shit] you make me feel that much more crippled.
I guess I should be glad it’s not a daily occurrence, yet! Hopefully the sticks can be surgically removed and all can get back to normal. My body may be broken, but my mind is not. I’ll only take so much! Trust me, I know I can be hard to handle. I know I have my moments too. But I do not deserve the silent treatment or the petty games.
Ah, that felt good to get that out. It’s been burning a hole in my brain for a while now. Hmmmmm, think I’ll go run that marathon now!! 😉