Anger · Health · healthcare · Medical · mental health · Multiple Sclerosis · Primary Progressive MS · Strength

And here we go again… Part 2

You’re gonna love this one… I just received an explanation of benefits from Independence Blue Cross stating that they are not fully covering the ambulance ride from the hospital to the rehab center after my hip surgery. I guess I should’ve just hooked my bed up to a car and rolled over that way. Ummmm idiots, I have no choice as to who the case manager at the hospital decides to use for transport.

The best part, my husband told the caseworker not to use American medical response, and she did anyways. 😳

I also received a second explanation of benefits in regards to my hip surgery. Again, I should’ve pre-certified breaking my hip first before I got the surgery. Logically, I understand the concept of precertification, but not in this case. So, we should’ve waited a couple of days before doing the surgery as I was lying there with a broken hip? What exactly am I supposed to do about this? They need to take it up with the fucking hospital and not me.

Thank you to those sending me your horror stories dealing with Independence Blue Cross/Anthem Blue Cross, etc. I’m so sorry you have to deal with this as well. Trust me, we will be heard!

Yup, sharing this one again!
Anger · Fear · Health · healthcare · HELL · Medical · mental health · Multiple Sclerosis · Primary Progressive MS · Quotes · Strength

And here we go again…

Oh Independence Blue Cross… You’re just disgusting! Seriously how do the people that work there sleep at night knowing what they’re doing to people on the other end. They are now telling me that I may be billed $5670.09 for my hip surgery because it was not pre-certified. So I guess I should’ve called them a couple days before my hip was broken to let them know that my hip was going to break. 😳 I know it’s not as simple as that, but come the fuck on! I seriously feel like they have my name on a list and it says, fuck with her so she goes crazy and dies. 😈

And contrary to what HR at my husbands work said, they only offer Independence Blue Cross and Kaiser, NOT United healthcare. And Kaiser doesn’t have an MS specialist so I am stuck with Independence Blue Cross. I will be looking into Medicare part B. We can’t really afford it, but I’ve got to do some thing.

I’m still trying to figure out why Comcast benefits called me directly. I think I’m going to call them back again and find out why. 🤔

I also had to send in an appeal for the ambulance ride in May after my suicide attempt. 😪 It’s really disgusting all the hoops you have to jump through when you have a chronic illness. Money is more important than human life. It doesn’t pay to be sick.

Health · healthcare · Medical · mental health · Multiple Sclerosis · PAIN · Primary Progressive MS

Living the Crazy Train Life!

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.

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…

Health · mental health · Multiple Sclerosis · Primary Progressive MS

You have multiple sclerosis…

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

Have courage and be kind
FUCK · Medical · mental health · PAIN · Primary Progressive MS

Days that turn into years…

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.

Health · Medical · mental health · Multiple Sclerosis · Primary Progressive MS · Ramblings

Round and round and round we go…

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. 

Fuuuuuuuuck

Have courage and be kind.

Loss · Quotes · Ramblings · Sadness

I have got to get my head right!

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…