I downloaded a couple of apps for motivational quotes etc. This one popped up today and it instantly sent streams of water down my cheeks. I am brave. I go to bed at night knowing that tomorrow nothing is going to have changed for me. That’s not being pessimistic, it’s being realistic. I go to bed at night, many times, asking whatever entity is out there to please take me home… Wherever that may be.￼￼￼ I go to bed at night knowing that there really is nothing of quality there for me when I wake up. And to me, that is bravery. ￼The picture above is one of my most favorites. I never before thought of myself as being brave. I never before thought of myself as being strong. I have always second-guessed everything I have ever done throughout my life.￼￼￼ I have never felt good enough for anything or anyone. My only New Year’s resolution (which is pretty new to me as I never make them because I never follow them 😂)￼ is to be unapologetically me. I am no longer going to hide away my feelings of my past, my present, or what my future may hold.￼
This is definitely going to be a new ride for my blog, a new adventure if you will. I’m scared every night before I go to bed. I’m always scared…
So many things have happened and I wish I could say for the better. I went through 4 appeals for rehab starting August 18 when I ended up in the hospital. I am now unable to get out of my bed thanks to the pain from the contractures in my hips and thanks to Independence Blue Cross appeals for denying me. ￼The insurance company decided that acute rehab is not medically necessary for me.🖕 Because you know, they’re my doctors! 🤬 I’ll get more into tthat in another blog. Right now I’m just trying to find a way to not go completely mad being completely trapped in a bed. This quote is eerily true. By eerily I mean, that little piece of me… That little girl… Has saved me from leaving this earth by my own hand.
I just wanted to check in and let everyone know that I’m still around. 😜 I am going to try to blog more as I think it will help me from going mad.
When people ask me how I have not gone a little insane from being in my bed, now over six years, I honestly don’t know the answer to that. Quite possibly I have…
I love the beach! I grew up going to Santa Monica Beach all the time and I just love all beaches. I love the water, Pisces here, and I love or at least used to love feeling the sand beneath my feet. I don’t love the beach however when it’s all inside my bladder. 😮 Nope… DON’T like it one bit. This issue happened two years ago and it looks like it’s going to have to be taken care of every couple of years from now on. 😭 You see, when they built my stoma for my urostomy they used part of the bowel. Can you say infection much!? I guess I didn’t really understand the whole process until after the fact. In all honesty there wasn’t much I could’ve done anyway because it had to be done. Thank you multiple sclerosis you fucking piece of shit disease. I’m sorry off-base a little, so now my bladder looks like you’re underwater on a rocky shoreline. it also looks like, I think, a dinosaurs 🦖 lair where they keep their eggs. 😅
And… it looks like there’s an alien and a set of twins hanging out in my bladder! I think I should ask for rent or something. 😂
On August 7 I will be going in and they will be inserting in a much larger tube into my bladder to hopefully clean out all my little stones. I’m a little bummed because I was hoping I could keep them and make a necklace or something out of them. I know, I know, gross. 😜 I have to find the humor in all things or I really wouldn’t want to be here anymore…
So that’s what’s been going on with me. Not much change in the paint department and I’m still pretty much trapped in my bed. But I am working on it and I hope to remember to blog a little more because I miss it. 🖤
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!
Bahahaha you know this is true! There are no more presents to wrap because by now they’ve all been unwrapped. People are deciding if they should take down Christmas immediately or if they should wait and take down on New Year’s. The malls are still pretty crowded because people are doing returns and/or finding what they think are deals after the holiday. People in the work force are praying that their company will also give them the day before New Year’s off. Who doesn’t want a four day weekend?
Then you have people like me who can’t distinguish one day from the next. I still use an old-fashioned calendar to mark days off as they go so I don’t get lost. 😂 I would love to be able to blame this solely on multiple sclerosis, but I can’t. I mean I have become more scatterbrained but I’ve always been a little off. LMAO just ask people that have known me for years. Trust me they will tell you the truth. 🤔 I am not sure if that’s a good thing or a bad thing.
I think the five days between these two holidays are quite similar to the feeling you get when you’re sitting next to a stranger and you’re not really sure where to put your arm(s). You know that feeling… You don’t want to touch them but you also don’t wanna look standoffish or rude so you fiddle with your arms as you’re not sure how to hold them. What ever will you do…
And with that please remember to always have courage and be kind! 🖤
I can’t help it, I love that movie and that part of the movie. One of my favorite movie lines! #MrDeeds
My blog title has nothing to do with how I’m feeling though. Living with so much uncertainty in life sucks! I’m always waiting for that other proverbial shoe to drop. I ask myself every day why do I even bother getting up in the morning err waking up because I don’t really get up at all. 🤔
Most people have something to look forward to they can make future plans. I don’t have that option. I have no way to a slow or stop my progression of my MS so I really do wonder why I bother. But, I will wake up every morning and lie this bed and figure out a way to get through each day lying in this bed. I think I need to invest in a good mattress LMAO but that won’t happen until pigs fly out of my ass. 😂🤣 Good mattresses are too fucking expensive. What a rip off.
That is all for now… I know you’re happy about that. Remember, have courage and be kind!
What do you do when there is nothing for your type of illness? Yes there is a medication now for primary progressive, Ocrevus, but is it really for us. Most of the studies I see have been done on people with relapsing remitting or secondary progressive. They already had medications. LOL what do you do when there’s nothing for you? It’s too dangerous for me to take any of the DMD medications. So how do you live your life knowing nothing, and let’s face it, no one can help you. How do you fight when there are no tools to help you fight? The only way to slow or stop the progression of multiple sclerosis, any type, is to be on one of the disease modifying drugs. So, please, tell me how do I fight? There are people out there that won’t take those medications because they feel the side effects are too dangerous. I would give my right arm to be on one because I can tell you MS will fuck you up a lot more than any of the side effects from the medications. MS is always working in the background and I don’t care how great your diet is or that you exercise 24 hours a day, 😂 that will not slow or stop the progression of multiple sclerosis! So if you are not on one of those medications, I’m so sorry, but you are a special kind of stupid!
I really don’t mean to sound like a bitch, but I have nothing to help me and it angers me. How do you go on with your life knowing that you can do absolutely nothing to help yourself. Yes I can watch what I eat and shimmey in my bed to keep movement going but that’s not slowing or stopping my progression. I am so fucking angry. I hate the fucking holidays because I cannot physically do anything for anybody not even myself. I don’t know if people really grasp the concept of being bedridden. Someone told me they were bedridden but that they could get in their wheelchair and cruise around whenever they needed to, that they could still transfer and things on their own. 🤯 UMMM then you’re not fucking bedridden if you can get up all by yourself and get in n out of your wheelchair on your own. What the actual fuck! I’m so glad I wasn’t near that person because I would’ve seriously opened up a can of whoop ass on them. LMAO when you’re bedridden you can’t get up out of your bed whenever you feel like it. Then you wouldn’t be bedridden! DUH I cannot even sit up on my own. I can’t even roll over on my own. I am stuck lying on my back for however long I stay in this universe. It’s a whole production getting me dressed and out of my bed and that is probably why I don’t do it very often. And it’s very painful… so there you have it.
Yes I’m angry!!
And every now and then you hear of a new celebrity just diagnosed with multiple sclerosis and they make it sound like they are some sort of martyr. For any chronic illness money talks. Granted it sucks that they are also struggling with this illness but they are able to get the resources that the majority of us sorely need but cannot afford. I would love to have someone at my home helping me every day. Then I could get out of my bed and I could maybe maybe one day get better. I don’t mean get rid of the MS but physically get stronger and mentally having someone to help me could change my life. But unfortunately the majority of us cannot afford Caregivers nor can we afford to handicap accessorize our homes. So while I feel sad for the celebrity, I would trade places with them in a heartbeat. I don’t even know where I’m going with this blog today. I can just feel that I’m not in a good place so I just needed to get shit out. As always I’ll be OK but sometimes I wonder how I’m going to be OK.