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! 🖤
I’m not sure I like the person I was before I got sick anyways. I don’t think I’ve ever really liked myself. I just hope part of me can still be found. I see all of the motivational quotes and things where they talk about being brave not bitter blah blah blah I guarantee you the people who make up those quotes are not chronically ill. 😂 Just like the people who say money can’t buy you happiness probably have money. I don’t even know why am blogging right this minute. I saw the quote in the image that I posted and ended up here.
And now trailing off to something completely different, I think there’s a fracture in my right hip. The more I try to move the more things that break. So really you tell me what the point is…
This popped up in my memories on FB and I really needed to see this today. I’m starting to not feel very strong and the last couple of nights I can not get comfortable at all. At night my legs become very heavy I guess that’s how to describe it and there’s moments when I can’t feel them and it scares me. I have become very anxious and ready to let go but then something happens and I make it through. I’m starting to really hate being trapped in his bed. It’s been five years and two months and I’m seriously fuck I’m not even sure anymore. 😂
I really do believe I’m going on a little mad. LOL oh well life goes on and so will I. 🖤😘
I think the hardest part is I know what needs to be done but we don’t have the resources to do it. And when I said above that I’m going a little mad, there are times I really think I am. 😜 I’m having issues again with sleeping and falling asleep because I really believe my body doesn’t know what it is supposed to be doing. It’s always at rest so how does it distinguish between when it should be asleep or awake. We are using pillows to slowly help keep my legs in more of a proper position but I don’t even know if it’s gonna work. They have been flopped to the side for so long trying to put them back in the position is horrifically painful. The key here is baby steps.
I don’t want to sound like a downer but I just don’t know if I can do this for another five years. When I say I’m bedridden I don’t mean that I can transfer into my chair and get up and cruise around I mean I’m trapped in this bed. The only way to get out of this bed is with the Hoyer lift. And being lifted up and that is so painful I think that’s what’s keeping me trapped in this bed. Just don’t know anymore. I’m scared, I’m angry, but at the same time I’m ready to kick some ass and fight. I just hope my fight stays stronger than my fear.
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!
Lately I think I do a lot of this in regards to doctors appointments etc. My procrastination comes from the fear of the pain it will cause to go to said doctors appointments etc. Just taking a shower is painful AF. And it’s all about my hips due to the fact my legs have been frog legs for over five years now. And my husband rolls me over on my side I can’t explain the pain in my hip joint area. And then the moment I am in my Hoyer lift and he starts to raise it up, as my hips turn in their joint to the proper sitting position all I can do is cry. My left hand which I have problems with, already ends up in a claw like fist when the pain hits and I literally can’t speak or function. And therein lies the main reason I don’t want to get up anymore. I can no longer handle the pain. I don’t even want to go to my pain management doctor because as I stated above it hurts to get up and be a normal person sitting like a normal person. So what can I do? I try to move my legs as much as possible on my own which is sometimes futile. My family can’t do it they have lives of their own and my husband doesn’t have time to work with me every day.
Unfortunately like you see in the movies people that are ill have caregivers that come in and out of the home. It’s not like that in real life unless you can afford it or the state provides it. Neither of which will happen for me. We live paycheck to paycheck but supposedly we make too much to be allowed help. Go figure 🤷🏻♀️ I wish it were like the movies because then I would have a physical therapist helping me daily, someone to help with my meals, showers, and my well-being. But it’s not like the movies. Lately I’ve noticed people are talking about the celebrities that have been diagnosed with MS blah blah blah. I feel for them, I do, but I don’t believe they go through the same types of issues that many of us have. They can afford getting the help they need and all that comes with being a celebrity. I completely feel for them because they’re stuck with this fucked up disease, but I guarantee having money makes having chronic illness a bit easier. Or maybe it doesn’t. What do I know?!
I really don’t mean to sound so bitter, but I am a little bit. LOL I think this is all coming out right now because it’s a new year and I am very clearheaded and I am confused and afraid because I really don’t know where to begin or how to get myself better.
Fuck it… I’ll think about it tomorrow… Because tomorrow is another day.
When I fell November 10, 2013 it landed me completely in the bed. Now I would think doctors would know the issues that come with being trapped in the bed. Legs falling to the side for comfort which makes you end up with frog legs in essence. I didn’t know until this past February when I was in rehab that they actually have little shoes/boots for this. Why in the fuck didn’t my doctors get me these hundred dollar pair shoes. The pain I’m in is from my hips being tilted to the side for five years and these cheap little shoes could’ve stopped that from happening for me.
I’m talking about this now because I’ve been trying to use the ones I got at rehab to slowly put my legs back in the proper position and it feels like it’s too late. Because my legs and my drop foot have been in that same position for so long it fights against the boots. So what happens is I get pressure sores on the sides of my feet. I’m so angry right now. I have no help I’m trying so hard to do it on my own but it’s fucking hard. My husband cannot do it all and if they had just gotten me these little shoes so many of my issues would not be happening.
❗️I’m talking about this because I just want others to know if you end up in your bed for any period of time invest in these hundred dollar pair of little shoe things so your legs stay in proper alignment. I wish someone had told me five years ago because I would not be in the position I’m in now. As I stated above it hurts so much right now to have them on that I don’t know if I’ll ever be able to get my legs back in position.
There’s a picture of Denzel because I just watched the movie the bone collector and noticed he had a pair of these shoe things on for the movie. 😜
I really need to get with the neurologists out here and tell them that they have dropped the ball on me for way too fucking long and it’s time they fucking help me. It’s too hard to drive long distance to another neurologist. But I’m telling you if they don’t start doing their job to help me I’ll take the long drive.
This last picture are my boots and I’m still not able to twist the hip or put the kickstand up. My feet are getting used to being in a normal position and it fucking hurts. They normally point and fall out. I really hope this works. I know it’s gonna take A long time. My doctors dropped ball… And in my depression I let them. 😪
I am sorry for the book. 🤓
I’m pretty sure that I repeated myself a lot and I’m really sorry tonight is a bad MS night. But I’m still Kickin and my wheels are turning because something good has to happen! It has to. ♥️👊
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.