I am really in the thick of it right now. I have not heard back from Independence Blue Cross, so I’m in limbo. Most likely I’ll have to call Accolade who is the go-between. We pay so much money for health insurance every year, yet we are not ‘allowed’ to speak to the actual insurance company reps￼!! 🤔 It is absolutely ridiculous.￼ Independence Blue Cross is 💯% withholding care from me. How can that be acceptable? Independence Blue Cross is really a joke. The incompetence￼ over there is astounding.
I’m tired… But I’m not going to stop… I’m broken… But I’m not going to stop…
Have courage and be kind! < The people at Independence Blue Cross should really take heed of that simple sentence￼. I really do wonder how they sleep at night. ￼￼￼￼￼
I was cruising the Internet and this picture popped up. It’s not meant to be sad it’s not meant to scare anyone. But I’m not going to spend another six years and three months in my bed. Without help, proper help, I’m never going to get out of this prison have a bed￼. My ankles suffer from dropfoot and contractures. My knees haven’t been able to straighten in about three years. And my hips I can’t even get in my Hoyer lift because of the pain. This has been going on for a very long time now and nothing has changed. I really thought my time in rehab in 2018 was going to save me. I fought so hard I did so well, then nothing. How do people that are bedridden see their doctors? I know they can call non-emergent transport, then try to coordinate that with their doctors appointments but first they have to make the calls to make sure it will be approved. Really? Making something hard even harder.
I wish I could be the shiny happy person that people want me to be. But that’s not gonna happen. I’m angry. I’m pissed off. I get it life‘s not fair blah blah blah. You know the people that say that to me… People with no chronic illness. I guarantee they wouldn’t last one day trapped in their bed not able to even get up to go to the bathroom, be able to roll over in their bed, or sit up without help. They would break the first 20 minutes.
Tears! 😂😂😂 No, if you could read my mind you would be screaming at the top of your lungs for help. I am so angry and I know that anger doesn’t help. But when every year it just gets worse, sorry I can’t put on that smile every fucking day for you. I’m angry about people who I see complaining all the time about the tiniest little things. Yes I’m an asshole. I can’t sugarcoat shit every fucking day. I really just want it all to end. I really really want freedom. I’m so tired of being in prison for a crime I never committed.
I’m kind of excited I found a non-emergency transport so that I can get to my doctors. If I can work it out perfectly I can make my appointments for the same day. It’s nice that all my doctors are in the same building. It’s going to be so much easier going by stretcher then having to try to sit for any period of time in my wheelchair.￼￼￼ I can’t even get my wheelchair so I think this is going to be good.￼ I think I’ll buy a crown for that day and as they’re pushing me through, I’ll put my hand up and do the wave. 😂
I’m going to talk to my doctor about contracture surgery as well as rehab. Maybe that’s the route to go. I’ve been trying to find the perfect in-home PT group from the names the Blue Cross rep gave me, but that’s not helping. All they tell me is, “Our rehab people are good.” I’m sure they are. I’m asking if they deal with muscle contractures. Frankly I don’t think any of them know what that is. 🤔 I just want to know how in-home therapy is going to be able to help me with the pain. They don’t. I need to be in a facility if I want any pain help. So I guess I’m just going to grit my teeth. 😁 I can tell that this is going to be a lot of fun…
Now I need to get my appointments, get the certification from the insurance company, and get a time slot for the transport. Oh how I love jumping through all these hoops just to go to my doctor. Oh well, we do what we Gotta do.￼￼￼ 😏
Time to straighten my crown and get shit done. 🖤￼Have courage and be kind￼
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…
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!
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.
If anyone ever tells you, be glad it’s just MS!! Punch them square in the jaw, to hopefully have the end result be that teeth fall out. Then they will remember never to say that to anyone ever again.
I’m really trying to stay positive, but when every day is the same with change nowhere in sight, it can be hard.
I’ll get over this feeling in a little while and I will get back to my positive outlook. But today I’m allowed to feel this way and be angry.
And no, I’m not glad it was just multiple sclerosis. So next time think before you fucking speak. This is not going out to any one person in general, it’s just something I see all over the Internet when people are ignorant. So now I am going to watch Fast Times at Ridgemont high, laugh at how stupid it is and funny, and find my positive place again.
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.
To literally and figuratively be trapped in your own body is tantamount to living in a horror movie. Horror movies are my genre and most days I feel like I’m staring in my very own movie. I wonder when I’ll get my star in Hollywood? 😜 That feeling of claustrophobia that feeling of been unable to move is a feeling no person should ever have to endure. Unfortunately many of us have to live this way every day of our lives. The Normies ( people without any type of illness ) go about their day in a bubble. I know, I was there once. While I was always a person to help others, by opening doors for someone in a wheelchair, by reaching things for people who couldn’t, or just to have a kind word for someone, the truth is I never really saw the person. I could feel for them and wish I could help them in other ways but I never quite understood just how it was living that way. Now that I am that person that needs help I realize just how much our country needs to wake up and give love instead of hate. I’ve had people push me aside in my manual wheelchair because they needed to get something and they couldn’t reach reach something with me in front of them. It didn’t matter that I was looking at something to purchase, all that mattered was I was in their way. I was a third class citizen that didn’t even need to be asked if I could please move for a second. Trust me that person never did that to anyone else ever again once I was through with them, but what if I had been someone that didn’t have a voice.
That’s the question in my mind every single day. How will I break free, or will I ever be able to. If I’m truly honest with myself I know that I will not get back what I have lost. I’m not saying that in a sad or depressing way, I’m saying it in a medically proven way. If only one doctor had said this to me I probably would’ve laughed at him, but it’s been several doctors have said this to me. I know they’re not trying to discourage me or hurt me they’re trying to give me reality. They don’t want me to get my hopes up so they’re giving me statistics regarding people with my severity of the disease. With primary progressive multiple sclerosis you constantly progress. There is no remission there is no 10 minute break. 😉 There is no relapse that you will come out of and be OK. You just continue to get worse. So now I’m trying to resign myself to the fact that my future, at this moment, isn’t very bright. As you noticed, I said at this moment. While I am a realist, I am also a dreamer. So I will continue to do my exercises, I will continue to fight this MonSter. But I’m scared. Even those with MS will, I pray, never have to be trapped like this. The disease itself is horrific but the thought of spending the rest of my life trapped in this bed is completely and utterly paralyzing. And I can say, with the upmost truth and honesty… I want to live, not just exist.