￼ and it never will be…￼
This is my truth, what’s yours?
Have courage and be kind…￼￼￼
ramblings of a crazy lady living with MS
￼ and it never will be…￼
This is my truth, what’s yours?
Have courage and be kind…￼￼￼
Yeah, this would be really motivational if those particularly rough days weren’t every fucking day…￼
Have courage and be kind.
For a brief moment, I really believed today was starting out well. Then I receive a call from Independence Blue Cross. ￼I guess they feel trying to take your life is not considered an emergency and they are fighting me on paying for my trip to the hospital. I feel like they should just come to my house and shoot me, point blank, in my head. It would be so much quicker and so much less painful for me. Basically they will not allow me to go anywhere to get proper physical therapy and they won’t even give me real visits for my home for Physical Therapy. We can’t continue to pay for private visits, we live paycheck to paycheck and can’t expect help for the visits forever. ￼￼That speaks volumes to me about what is allowed in our country right now. Again, and I will scream it from the rooftops, I have never ever had this much trouble with my health care insurance until a certain orange idiot took over the White House. I think companies like Independence Blue Cross feel they can deny life-saving care for people because right now our government will allow it. Their internal doctors probably were not intelligent enough to get real jobs so they sit behind a computer to read papers regarding patients, without ever meeting the patient, and make life changing decisions.
At this time in my life I’m not too worried about karma since every day brings something more painful to my life. With that being said, I hope everyone of those people that is denying me the care I need has horrible and painful issues happen to them. I truly feel that’s the only way they will understand what it’s truly like to be ￼chronically ill. Better yet, I hope it happens to someone they love so that they can feel just as helpless and lost as my whole family feels.￼￼￼￼ Was that a bit harsh? Well you know what, it’s a fucking harsh world!
I don’t have over $5000 to be able to pay for that hospital visit. I shouldn’t have to pay for that hospital visit since we pay thousands of dollars a year to have Independence Blue Cross insurance. I don’t know how those people sleep at night. Well, I guess when you have no heart or soul it’s easy. Just remember that one day you disgusting people will have to answer for what you’ve done. While I don’t believe in the heaven and hell aspect of religion nor do I believe in the God that some believe in, if there were a hell… That’s where you people will end up! I’ll see you there, because you see I’m driving the bus… ￼￼￼
I will go on, and to those of you that are trying to blatantly and knowingly hurt￼ my life, be prepared because winter is coming!
Have courage and be kind.￼￼￼
#Depression #Anxiety ￼#Loneliness #MentalHealth￼ #MotivationApp￼
Have courage and be kind.￼
I think doctors forget, or simply don’t care how they speak to their patients, and how those words can affect them￼. Tonight in a very blasé tone while shuffling papers and speaking with the nurse that was in the room via FaceTime, Dr. Kareti from AV neuroscience, told me I am end stage MS and there’s nothing more they can do for me.￼￼ The humorous part is the that their doctors office is why I’m trapped in bed from pain from hip contractures. No one found the break at L1 when I fell October 2013 which landed me in the bed.￼ No one got me the little kickstand boots to keep my legs in proper position. ￼￼￼ I mean if I had known then what I know now I could’ve done all this stuff on my own. Unfortunately I’m not a doctor and that’s why I was going to doctors because I thought they would know what to do. ￼￼And now, there’s nothing more they can do for me. Oh wait, I forgot, they can contact hospice for me… ￼
Oh oh oh… I tried telling him about the Physical Therapy fuck up and the visits or lack there of, and he just blew it off.￼￼￼ I mean he was really busy looking at papers on his desk and handing things to the nurse. ￼I must’ve interrupted him with my FaceTime appointment.￼
So to sum it the fuck up￼, ￼basically because I have severe pain and am unable to get out of my bed, I should just throw in the towel.
Game on bitch!
Have courage and be kind
… I just read this again and I should probably just burn it down because the pain is terrible and the pain is just so intense right now I shouldn’t be blogging about anything. But I’m gonna leave it I just felt the need to say sorry. I’m a little lost and so angry.￼ I seriously can never catch a break.
And like I always say;
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.￼￼
I am in a mood and somehow I can’t find my way out of said mood.￼ Still awaiting Physical Therapy to be covered by my insurance company. Is it any wonder that I’ve heard nothing from Independence Blue Cross? I barely ￼reimbursed half of the money back from the transport company they told me to use. At this point they are denying me the ambulance trips with AMR and the hospital visit. I’m getting bills from that amazing time￼ that I’m going to collections for it. 😳 Sorry but you can’t squeeze blood from a turnip… or some shit like that.￼￼￼￼ I guess they don’t feel suicide is an emergency. I’m sorry, attempted suicide.
Months would’ve been easy, my waiting is moving on into my seventh year. That light at the end of the tunnel that was starting to come into view, is now flickering.￼￼ I truly believe I have to keep fighting but I also understand that things may never change. I have to learn to be able to wrap my head around how my life may have to be. I’m not giving in, but I do have to be a little more realistic. ￼I’m tired. My mind is tired. My body is tired. My soul is tired. ￼￼￼
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…￼￼