Hello… Life has been crazy since September 14. I was in the Antelope Valley Hospital from September 14 until September 25 when I was transferred to the Antelope Valley Care Center for recuperation. It was to be for some physical therapy and taking care of my surgery site from the broken hip. I had a total of 23 staples by my left hip and one of those staples by my left knee.￼￼￼ I still haven’t really looked at the area as I’m still a bit freaked out about the whole broken hip thing. Insurance gave me a whopping 13 days for physical therapy and rehab. 🙄￼
Thankfully, on October 8, 2020, I was able to get back home. Both of my feet and ankles were￼ very swollen. It was really cool as when I got home we literally watched my feet go back to their normal size. It’s possibly because the beds in those places are not comfortable whatsoever. The other issue is those beds are made for people under 5’9″. Being 6′ tall, it does not bode well for my circulation.￼￼￼ Literally the minute I adjusted myself into my bed, the swelling just magically disappeared. There is still a tad bit of swelling on top of both feet, but very mild.￼
I am still having some pain in my left hip and I am very nervous to move too much at this point, as the doctor explained that my ￼bones have severe osteoporosis￼￼. When they did the hip surgery they obviously moved my leg into a proper position. So now my left leg is much straighter and doesn’t flop to the side as much anymore. The problem is my hip is fighting to go and drop again. So we have put a pillow under that knee to keep it as straight as possible. I’m not sure why they don’t have some sort of braces for me. Although the way my doctors have let me down in the past, I guess I know why.￼￼￼￼ I am going to be getting some physical therapy at home to hopefully get me back to where I was before my hip mysteriously was broken.
The best part about coming home was getting my bed bath and my hair shampooed in my bucket. Oh my gosh getting almost 4 weeks of hospital and nursing home nastiness off of me, was amazing!
This was me, above, in the nursing home. Look how green I look. Okay, okay, it actually is the baby Yoda filter on Instagram.￼￼￼￼￼￼ Seriously though, I did feel green a lot of the time I was there. 😏
This picture, above, is after I got home and had my amazing bed bath and hair shampooed! It was Joyous!￼￼￼
I’m thankful to be￼ home, and I’m feeling pretty good. I was a good girl today and got all of my follow up doctors appointment scheduled for the next couple of weeks. They will be done by video call, so that’s a plus.￼ I am hoping to get on a bone medication and they also found a blood clot so I’m hoping to get the blood thinner prescribed to me as well. I am going to keep some hope alive that now that we know more but we’re dealing with, that I will finally start being able to get help.￼￼ It could happen…
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!!
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.
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. 🖤
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…￼
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. ￼￼￼
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.￼￼￼