￼ 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.
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.￼￼
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…￼￼
Lately when my alarm goes off in the morning I’ve just been lying in my bed for a good hour or more debating… do I actually open my eyes and wake up or do I go back to sleep?! My days run into each other and as of late I’ve been a day off. I’m still waiting for the Physical Therapy to get back with my insurance. I’m very thankful that my mom is paying for private sessions￼ while I wait, but she should not have to do that. Independence Blue Cross is yet again sitting on their thumb and twirling.￼￼￼ I’m jumping through their hoops and doing in-home physical therapy. The pain is horrifying. Unfortunately I don’t have the medications I would get if I were in an actual rehab facility. I just keep gritting my teeth and going for it. We should not have to deal with this crap when we pay good money for actual healthcare insurance. Our country has gone to hell in a handbasket over the last 3.5 years. I’ve never in my life had this much trouble with insurance. I feel like I’m in limbo.
Although I will say that in a way it’s good that I am stuck in my room in my bed right now. We have so many idiot privileged Americans that think they don’t have to wear a mask. Look asshole, you MUST wear a fucking mask. And please don’t tell me you have a medical condition that makes it impossible for you to wear a mask. If that is true, you should keep your sick ass at home during a pandemic. I know brains are in short supply right now with everyone that follows the idiot in chief. And now we have another shit show starting with Kanye West thinking he’s going to run for president. I really hope everyone realizes this is just a ploy, most likely between him and the orange Cheeto to take away votes. But, the orange guy only got in because of the electoral college. He did not win the popular vote! So just like the south losing the war, he lost the popular vote. ￼￼￼
You ignorant people are the reason countries are banning Americans right now. Our country is the laughingstock of the world. And please don’t call yourself a patriot and say you love your country! If you can’t wear a mask to protect others in your wonderful country, then you’re nothing but a piece of shit! I’m sure it’s quite obvious that I despise the idiot in the White House. Not because he’s a Republican but because he’s a vile disgusting human being. ￼￼If you can’t wear a mask to help your country you are no patriot!
I know my blog is going all over the place today because that’s where my head is. I’m numb right now and I’m not sure why. I am deeply saddened by everything happening in our world right now. My heart breaks with all of the hatred from certain groups of people RACISTS that are being caught on video all over the place. ￼￼￼Again I’m probably better off being trapped in my bed because if I were anywhere near these racist “Karen” bitches, they would be laid out on the concrete. I have no time for those disgusting people.￼
And please don’t come at me with all lives matter. No shit Sherlock we know that. But right now in our country black lives are in jeopardy. And quite frankly all lives don’t matter until Black Lives Matter! I will no longer sit by as a white woman and be complacent about this issue. I have friends that are hurting and I will stand next to them and fight with them! ✊🏻✊🏼✊🏽✊🏾✊🏿
Unfortunately those people running around saying all lives matter really only care about life in the womb. The minute it comes out, you don’t care anymore. I won’t debate anyone on this because it’s right out there for you to see. People are out celebrating the Fourth of July while children are sitting in cages in the United States of America. For those people that think that’s acceptable, you’re a piece of shit. (we seem to have a lot of shit in our country right now don’t we) ￼Plain and simple! ￼￼￼I know I know you’re gonna blame their parents. I’m sorry if I lived in a shitty country I would do anything I could to get my children to a better place. If you are a parent who wouldn’t do that, I feel sorry for your children. Well shit, right now I do live in a shitty country. That’s a thought to ponder. ￼￼￼
Let’s see, have I missed anything or anyone?! I think I’m good to go right now. I swear lately I have eye rolled myself into oblivion￼ with all the ignorance that I’m seeing.￼ 🙄 I am sorry, but it’s no longer that we have a difference in opinion, we have a difference in morality!￼￼
As always, have courage and be kind! 🖤￼
Since my husband’s been home thanks to the corona, we’ve been moving my legs more and more. It’s all been leading up to getting me into my chair. Today was that day. I wish I could say that it worked and I got into my chair. But I can’t. The pain in my lower back, my hips, and my knees was so excruciating I couldn’t do it. I was scared we were going to fracture another bone in my back. I’m so angry and bawling like a little kid. I’m angry at myself that I just didn’t bite the bullet and have them throw me into my chair. The pain was/is worse than the contractions I experienced giving birth to my son.￼￼￼￼￼ 😢
We will try again, hopefully tomorrow. But after today, I’m scared… so scared. It really feels like I’ll never get out of his bed. I am bedridden in every sense of the word. I know I say it all the time, but wow, did my doctors drop the ball in 2013. And wow, did Independence Blue Cross fuck me in regards to Rehab. ￼￼￼It just sucks knowing that there is no way to get help. We can’t do it alone. I’m thankful that tomorrow is my counseling appointment as I’m falling apart right now. I’m so disappointed in myself that I couldn’t do it. I know I shouldn’t be, but I am.￼￼￼
Have courage and be kind.￼￼