It’s not… It’s not… It’s NOT your fault! 🖤
Have courage and be kind.
It’s not… It’s not… It’s NOT your fault! 🖤
Have courage and be kind.
￼ and it never will be…￼
This is my truth, what’s yours?
Have courage and be kind…￼￼￼
#Depression #Anxiety ￼#Loneliness #MentalHealth￼ #MotivationApp￼
Have courage and be kind.￼
When that idiot of a doctor told me via FaceTime that there’s nothing more they can do for me, I am end-stage MS, and he’ll put in a call to hospice, I almost said “you’re right!￼” But after talking to some amazing friends and getting the best support in the world, he can kiss my fucking ass! Dr. Kareti at AV Neuroscience, you seriously pissed off the wrong woman.￼￼ Telling someone over the phone that they are at their end, in a sense, was about the most disgusting thing a doctor could do. Aside from the fact the whole time he was shuffling papers on his table and talking to a nurse, what he did was unconscionable. What if I had been alone? What if I had no support system? He quite possibly could’ve sent someone over the edge by doing that. ￼
Now, I’m gonna show him just how incompetent and how wrong he is! Tell me I can’t asshole… I’m gonna show you I fucking can! You’ve just given me more strength than you know. I will admit that I was frightened of the places my mind went to after the phone call. But I made it through with so much help from my friends! I’m going to keep going even if I have to crawl.
I’m going to Keep fighting. One things for sure is I’m not going to be silent when I don’t receive the best healthcare possible. I have a remote call with my pain management doctor today and I will be informing him of the conversation I had with the neurologist. I’m curious to see if he’s going to agree with him or not. ￼
I’m tired, I’m scared, I’m frustrated, I’m angry, but the warrior in me is going to rise from the ashes, just like the Phoenix!!
Have courage and be kind￼￼.
Twenty-three years ago today, I was told, you have multiple sclerosis. I’d been searching since 1986 because I knew something was wrong. I was diagnosed with chronic fatigue syndrome and EPV. I was also diagnosed with clinical depression and anxiety. Go me! Back in 1986 MRIs were not a test doctors really ever did unless there was an accident of some sort. And no one would’ve thought multiple sclerosis when they looked at me. 👀
What my doctor saw was a healthy young woman who was working full-time and going to college at night. Chronic fatigue and the Epstein-Barr virus were easy to diagnose. Even getting these diagnoses I kept searching for answers because I knew something else was wrong.
Then, in 1997, a PA asked me to walk about 10 feet for him. I did and he immediately ordered an MRI. A physicians assistant diagnosed me. He said all he had to do was see how I walked and he thought it was either lupus or MS. The drunk walk. LOL my MRI showed many lesions of MS. My lumbar puncture was clear so I figured someone was wrong. I went on to get two second opinions and was informed that yes I have MS and I am primary progressive. I was so hoping they were wrong. They could’ve diagnosed me with the MRI and saved me from that awful lumbar puncture. 😂
I wish I could say I’ve come to terms with The MonSter that is MS, but I haven’t. Life as I know it was taken away from me and my family. MS is a wicked beast and there is no cure at this time! When people say, it’s just MS, I want to junk punch them. 😜
It’s not, just MS! It’s a debilitating, paralyzing, awful disease. We need more awareness and we need a cure… hopefully in my lifetime. 🖤
#MSWarrior #NeverGiveUp #KeepFighting #WeNeedACure
I was bored so I did a Google search on how many days it’s been since I’ve been in bed since my fall on October 10, 2013. Technically it’s more like 2,462 days taking into account doctors visits and things like that.
I also realized it’s been almost a year since I have been dealing with constant hip pain and have not been able to actually have a shower. Okay, don’t gross out I do bed baths. This timeline ￼￼was when I had thought I had broken my hip and had gone to the hospital and Independence Blue Cross￼ denied me rehab.
I probably shouldn’t look at it like this, but there you have it. I’m kind of numb. Physical Therapy hasn’t started back up yet. Quite frankly does it even matter since insurance will only give me two actual physical therapy appointments? Okay in reality they gave me four physical therapy appointments, two of which was checking me in and signing me out. ￼Now, unfortunately for me, the￼ young man that was helping me privately has not been able to be here because of a Covid scare so we are waiting to make sure he is OK. I know I have to keep positive and try to find the good in every day. Unfortunately for me, that other fucking shoe always has to drop when things are going well. I really hate that fucking shoe.
Being trapped in a bed is no walk in the park. Literally. And let me explain being bedbound to you. Being truly bedbound means you cannot get out of your bed for anything. I understand that people try to understand what I’m going through, but please don’t tell me you are also bedbound when you are not. It really downplays the pain of what I’m living through. Especially when I see pictures of you out of your bed doing things. Don’t get me wrong, ￼￼I am so very happy that you’re able to do that, but please don’t use the term bedridden or bedbound, because you are not. Now, ￼once I get my pain under control, I will go longer be bedbound. I just keep hope every day that I will be able to one day get my pain under control. The only problems I foresee are what has been my problem from the time I fell, my doctors…￼
￼￼￼Have courage and be kind.￼￼
PT has stalled. Someone was diagnosed with Covid where he works. In the scheme of things I’m lucky, I don’t have Covid. I just hope it doesn’t put me back too far when he can come back. I also hope The person diagnosed with Covid makes a full and speedy recovery and that nobody else tests positive.￼￼￼
I can’t say that I’m not worried…
Have courage and be kind.￼￼￼
Like I said in my previous post, I’m numb. I was just watching a movie, and could not stop crying. Not so much because of the movie, but because of the characters. You know, being able to walk and all. I know, petty right?￼￼￼￼￼￼ I just want to be able to get up and do my make up and go to a restaurant and sit in a booth. (OK I wouldn’t do it right now, you know corona and all) I just want to feel my feet on the ground again. For 2,461 days (give or take doctors appointments etc.)￼￼ I have been in this bed. I know I should accept it and like a couple people have said, get over it, but that’s not an easy thing to do. ￼￼I just feel like everything is crashing down on me.￼ I don’t feel strong. I feel like I just want to fall in a hole and hide away. ￼ I seriously cannot stop crying. And it’s not just a couple little tears, it’s ugly crying.
I know, I know that I will survive this. But seriously, sometimes I wonder what’s to survive?!￼￼ I know logically that it’s taken me 2,461 days to get here, so good things won’t happen overnight. All I need to do is to be able to get into my wheelchair. You would think that would be easy right? It’s not. The pain in my hips I believe is getting better with each PT appointment, but the range of things I need to do I can’t do at my house. So then my mind goes back to Independence Blue Cross denying me rehab in the facility.￼￼￼ I know I should let it go and get over that, but I’m fucking angry. I am so fucking angry. I’m never comfortable anymore. I can never find any relief.￼ Before anyone asks, I am not suicidal. I’m angry! I’m angry at my doctors who dropped the ball 2,461 days ago! I’m angry at an insurance company who values money over human life!￼ ￼I’m fucking angry at rich people who have the money to afford the kind of help I need!￼ I know it’s not their fault they’re rich. 😜 I don’t even know where I’m going with this blog but I just knew that I needed to get it out. ￼￼
Then I read all of￼ these wonderful motivating quotes people do, so, when does it get better? I am moving forward. I am doing all the things I’ve been told I should do. I am trying to learn patience.￼ I am trying to hold it all together. I am just really tired of only existing and not living.￼ I miss being able to wear regular shoes. I miss being able to wear jeans. Oh you have no idea just how badly I miss being able to wear jeans! And oh my God, boots! I miss boots! I miss taking two stairs at a time.￼￼￼￼ I miss being able to see over everyone in the crowd. (6′ tall here) I miss being able to just put on a bathing suit and get into a pool. I really miss going to the beach. ￼￼ The one thing I miss more than anything￼, is to be able to go places with my kids, my family!￼ I miss me.
I can’t take off my warrior mask. I cannot fall apart. I would love to be able to let go of the weight that I’m carrying. You have no idea. As I’m reading what I have written, WOW, do I sound like a little crybaby bitch.￼ I am one of those people that￼ hate people that cry and complain all the time over trivial shit, ie. the common cold and such. ￼I really hope they never get something substantial because they won’t be able to handle it. But alas, then I feel bad for feeling that way because it truly is all relative to the person going through it. So then I feel like a real bitch.￼ Then I get angry at myself for being a bitch, and the self deprecation cycle goes round and round. ￼I just want to know why it has to be so hard.￼
If you’ve made it through my crybaby blog, thank you. I am trying to hold it together. I am just glad that it’s almost time for bed because I’m truly done with this day.
Have courage and be kind…￼￼
I have made it through a couple times where I didn’t think I was going to make it. I wish I could say that it’s going to be OK, but I don’t know. I’m trying really hard every day and hoping that something is going to give. I just can’t go another 6+ years in this bed. I’ve had to learn patience, which has never been one of my virtues. I really want to stay positive but I don’t see me getting the help that I need. I’ve been in this bed for over six years and my body has, well, died in a sense. It’s going to take a lot of time and a lot of hard work to make my legs go back to a normal position. Unfortunately, we don’t have the money or the good insurance to get the help I need. And in this moment in my life, unless you’re trapped the way I am trapped, I understand you’re not going to understand. I know, blah blah blah. I just needed to vent it out. I’m struggling, but I’ll get through this. I’ll get through this to wake up trapped again. But, I’ll do it because that’s what everyone wants. OK, that didn’t come out the way it was supposed to, but I think some of you understand.
My legs are jacked the fuck up. I can’t straighten my knees or bend my ankles properly. I’ve been stuck in this bed for so long as I sit up, in my adjustable bed, I get dizzy. My body has literally died being in this bed. Ten to twenty, and I’m being generous, physical therapy visits won’t do anything for me. I can’t sit up unless I have help or something is behind me. But like I’ve stated before, Independence Blue Cross took me out too soon from the rehab. I was sitting up on my own. But when you get kicked out of rehab and you get no good in-home physical therapy, it all goes away.
Yes I know it’s obvious I’m struggling. I just am not sure how to wrap my head around it all. I can’t see the light at the end of the tunnel anymore and that’s what scares me. But I’ll keep fighting and hopefully one day it will take me to where I need to be.￼
I’m sorry if it’s all over the place right now. But I can’t get my thoughts in order so, there it is.￼
Have courage and be kind.￼￼
We must keep going… I know that know. Although, it can be so hard to do. The home health nurse came over last week and now I’m waiting for the physical therapist to call for an appointment. We are not sure how many appointments I’m allowed through Independence Blue Cross. Sadly, it probably won’t be enough. Again, I’ve been in this bed for over six years. The damage done is much more intense than a few at home PT appointments. All about the money and giving their higher-ups bonuses at the end of the year. Meanwhile, I’m trapped in my bed thanks to, in part, Independence Blue Cross.￼￼￼ they kicked me out of inpatient acute physical therapy in 2018 too soon, and now they won’t give me any proper care. According to Independence Blue Cross doctors, it’s not needed. My family does as much as they can, but without real help… I really feel like I’m going to be stuck in this bed for a long time. ￼￼Unfortunately in the world we live in today, insurance companies run our healthcare. Profits over people. I’m still waiting for them to give me my money back for the transport services. With everything going on the world right now, we could really use that 900+ dollars back. Greed prevails… 😳￼￼
I’m trying really hard to keep going. I believe I will, but I just need help. My counseling appointment went really well last Thursday, and I will be talking to him again this Thursday. So that’s a plus.
I’m still feeling quite a bit lost but this time I am reaching out. It’s gonna be a long process but I have to keep going. ￼
Have courage and be kind.￼￼￼