Health · Medical · Multiple Sclerosis · Primary Progressive MS · Ramblings · Strength

Be the squeaky wheel!

This is true on all kinds of levels. But, when it comes to your healthcare, it should NOT be this way!

An update to my healthcare insurance fiasco: it’s all been approved for my ER visit. Now I know this should make me really happy, and it does. The only problem I have with all of this, is that it took so much of my spirit and caused so much stress for something that was, an ‘error’. my question, is what if I hadn’t appealed or been so loud about it? That ‘error’ would’ve cost me over $20,000. Unfortunately I know there are people out there that don’t know their rights. There are people out there that don’t know how to appeal. There are people out there that don’t have an army of amazing friends that will retweet and help. We need healthcare reform on different levels. We need better advocacy for people to be able to fight. We need better healthcare insurance so that companies don’t have these, ‘errors’!

So yes, I’m very happy this all got taken care of, but it should not have happened in the first place. I am very thankful for the representative I spoke with that helped me, but it should not have happened in the first place.My advice to people who get these outrageous medical bills where your insurance company is denying you. Don’t stop fighting! Scream About it to everyone as loud as you can! Look for the right type of attorneys if you need to. And in all my fun dealings with this I gained a little knowledge. An Erisa Attorney is where you want to start your search. Take it to the Internet, take it to the newspapers, the news stations, anywhere you feel you could be heard!  

We need to be heard when we are denied healthcare. We need to stop letting the health insurance companies run our medical care and act like they are our doctors. They are NOT!! I am not going to give up or stop being heard. We are all human beings and we all deserve healthcare regardless of our income, our gender, our race. 

Be loud, be heard. Have courage and be kind.

Health · Medical · Multiple Sclerosis · PAIN · Ramblings · RANDOM · sadness · Strength

DeNiEd AgAiN

Some of the not so great things that happened to me in the past six months or so is that I was denied acute physical therapy rehab. I went through every one of their appeals and was denied every time. They say for me it’s not medically necessary and basically that’s the only reason given. Let me think, I have severe hip contractures due to being bedridden, yet acute physical therapy isn’t medically necessary for me. 🤔 The story goes a little something like this…

On August 18, 2019 my husband was trying to get me into the sling for my Hoyer lift so I could get out of bed. As he started lifting me and the sling pulled up around my body, the pain was so excruciating I really believed my hips were going to break. Needless to say I never made it all the way up or out of my bed. We called 911 and I was taken to Palmdale regional medical Center. At that time we weren’t really sure what my hip pain was. We knew that my knees and ankles had contracture issues, but my pain management doctor was saying it might be arthritis, osteoporosis etc.. The ER doctor explained that my hips had contractures just like the rest of my legs. It was as if a💡went off in my head. Like, no shit… oh my god how could my other doctor(s) not figure this the fuck out. The rehab institute at Palmdale regional medical Center was where I had been for one month in February 2018, so I asked if they could contact my doctors and try to get me back in. It took the next two nights and three days before Independence Blue Cross came back with, DENIED. After exhausting all four of my appeals, (4months) I was DENIED Rehab. Not medically necessary. I completely understand that the doctors that work at these insurance companies are basically rent-a-docs that probably can’t get a job at a legitimate place, but come on, I’m the poster child for rehab.  In fact, for how severe my contractures are, the only options are surgery or acute physical therapy. So that in a nutshell is my denial for, realistically, life-saving therapy for me…Now on to my new dilemma where I’m being denied. They are now saying that they will not pay for my ER visit because it was not an emergency. 🤬 When a representative from Independence Blue Cross called me to ask about this appeal for this charge, I told her what the emergency was. I explained the same thing that is stated above; how I was trying to get out of bed with the use of my Hoyer lift and the pain was so excruciating from the muscle contracture’s that I could not do it. I could not move!! Now in my book that’s a fucking emergency. obviously it was an emergency enough that they paid for the ambulance. I mean really for fucks sake.

(Attached) is what the incompetent person, I’m trying to be nice about this, said in the DENIAL letter. “You stated that you were experiencing difficulty and could not stand so you went to the emergency room for services” is she fucking kidding me?!! First off I would never have said that because I haven’t been able to stand for 6 years 2 months!!! For fucks sake I’ve barely been able to get out of my bed. I’m not sure what part of, I’m bedridden and I was having pain in my hips trying to be lifted in my Hoyer lift, that she didn’t understand. So she either lied on that form or she just didn’t give a shit to listen to what I had to say.I bet it’s a little bit of both… Lied so that the insurance company wouldn’t have to pay which falls right in line with doesn’t really give a shit. I have a call in to her, so we will see if she calls back. They are on EST and right now it’s 4:56 PM PST, so I bet she’s just not gonna call back. I really believe that these people and these money corporations do this often so people like me are not given the care that is needed. They think they can be our doctors and that they know better than our doctors.🖕

So now I get to deal with all of this. Sorry the little attachment above is a little wrinkled. When I read that line for the first time, I lost it. Everything and anything in my reach was thrown. When I realized I was trying to pull my hair out and the scratching on my face started hurting I just broke down into a big heap of tears.

At this point my body has deteriorated more and more and my muscle contractures have gotten worse and worse. I have so many calls in to so many people and they either don’t call back, or they’re rude. If anyone reads this and you know of anyone that could help me, attorney, disability advocate, hell a juggler, 😜 please send them my way. I really don’t know how much longer I can go on. Have courage and be kind.



Anger · Craziness · Darkness · Health · Multiple Sclerosis · PAIN · Primary Progressive MS · Ramblings · Sarcasm · Strength · Stupid Stuff

Trapped Inside

This GIF popped up on Facebook and when I saw it I felt empty. I decided to post it because it really does sum up my life. I have been trapped inside my decaying body for approximately 6 years 2 months. It is actually a bit more but I removed doctors visits, visits to the store before my surgery in June 2014, and the occasional visits to my dads. In that time it equals to approximately 28-30 days that I’ve been out of my bed. I don’t know how it happened. What I mean by that is, I don’t know how it got so bad. October 10, 2013 I fell. I was transferring to go to the bathroom, and as I stood up my legs went limp like cooked noodles. They did no x-rays at the hospital that I can remember, they just really chalked it up to MS. The hospital and my doctors knew that I was unable to stand sit up, pretty much paralyzed from the waist down, etc. They did the Solu-Medrol bullshit which did nothing for me. Then they basically sent me home with no real after care.

This is where I don’t know how it all happened. The fall definitely started it, and then I go blank. The depression I remember was paralyzing just like my body. Then in a weird whirlwind of doctors appointments the next thing I knew I was scheduled for colostomy and urostomy surgeries for June 10, 2014. Was this medically necessary or was it done to make it easier for everyone around me? I don’t really know anymore.

Why wasn’t I offered acute rehab? Why wasn’t I offered in-home nursing care? I don’t know! 🤷🏻‍♀️ I do know that a friend, an RN, had to come to my house to catheterize me so I didn’t piss my bed every five minutes. Not sure why my doctors or the hospital didn’t do that for me. I also know, looking back, that I was completely fucking lost. I have never been someone to lie down and be stomped on, but I guess I could not find my strength back then. The surgery, for me, what horrific.  and the next couple of years were literally lived as if I were in a dream.I will fast forward to now, because I don’t have the energy to really talk about it much more. All I know is I am trapped in a body that is destroying itself from the inside out. Since I was denied rehab August 18, 2019 my body is deteriorating more and more. i’ve exhausted, in their mind, all appeals. DENIED!! 🤬  Because of this, my legs are becoming more contracted. Independence Blue Cross basically feels it’s not medically necessary for me, acute rehab! Because their doctors I guess are my doctors now and they know better. Are they fucking kidding me! I’m the fucking poster child for acute rehab! Here is a link of what is happening to me and what I sent to the insurance company thinking they would actually understand it and help me. Bahahaha They either cannot read or they just don’t care. I’m going with the latter. People are telling me I should contact news agencies, attorneys, etc., but the places I’ve contacted obviously don’t think that any of this is wrong. Either that or they’re just scared to death to take on Independence Blue Cross. I guess in the world we’re in right now it’s OK for companies like this to throw away the disabled, people with chronic illness, because we are the people no one really gives a shit about. And quite frankly, I’m tired!!! I have no help whatsoever! Mentally, physically… Nothing. 

I am 100% in prison for crimes that I have never committed. The prison that is my body and the four walls of my bedroom. There is only one or two people that completely understand what I’m going through that I know. And when other people say, they know what I’m going through, they completely understand, yet that person/persons are shown standing up in pictures and going places with family… no, you have no fucking clue what I’m going through. And you should be really fucking glad you don’t. If I were able to even stand up I would never be in this fucking bed. So please don’t talk of things of which you know nothing about. You may share my illness but you don’t share what’s happening to me.

What I hate the most about all of this is the person I’m slowly becoming. I really do believe I’m going to little mad, I can no longer see the light at the end of that tunnel, and I’m not sure why I even bother anymore. Yes it’s a new year blah blah blah… but for me there will be no changes. AND I am NOT being pessimistic, I’m being realistic!  I will add that you don’t need to worry people, I’m not gonna kill myself, off myself, end it, whatever. Do I think about doing that every fucking day… Yes I fucking do! But, I won’t and believe me it’s not for the reasons that you are probably thinking. And now, I think I’m done for the day and I think I’m going to medicate so that I don’t care what’s happening to me. And for those of you that act like I’m a stoner or something, fucking A right I am! Cannabis isn’t going to kill my kidneys or my liver like Norco and Xanax and all the other drugs they want to put me on. So yeah I love my weed. And to anyone that says that’s bad for you or it’s addicting or it’s a gateway drug, educate your stupid ass! Or better yet go pour yourself another drink or take one of your sleeping pills and then talk to me. OK I’m getting off base and I’m starting to get pissed so I’m going to end this for today.

So are you loving my new unapologetically me yet?

As always, have courage and be kind!

Craziness · Darkness · FUCK · Ramblings

Life, it is what it is

After a bad fall about a month ago, I’ve been in and out of hospital emergency rooms and spent a little bit under a week in hospital. Lotta good it did, as I’m worse now than I was before I went in. I need in-home care I need help but the doctors keep blowing me off. And my doctor’s nurses, forget about it incompetence galore!

They keep telling me they’ll call me back once they get information about in-home care. Has not happened at all. They don’t even call my prescriptions when they expire anymore. I have to call and remind them. Yeah that helps with my stress level! I’ve been with the same doctor for 17 years!

I can’t even get into what happened in my last hospital visit a couple of weeks ago as it just brings back too many awful memories. Not as bad as back in 2009-2010 but almost.

At this point I’m completely bed ridden, my legs do not work at all I can only move them if somebody moves them for me hard to transfer to my chair I won’t even get into going to the bathroom. LOL that’s way too much information… TMI!!

Bottom line I need home health care, and my doctors are ignoring me and not helping me. So me, being the bitch that I am, I have an appointment with a new neurologist on January 28 and an appointment on the 18th of this month with the new internist. I’m done, and I’m taking charge and taking back my power!

For those who know me, know I’m pissed and when I get pissed I get shit done. They know not who they are dealing with! LOL I’m done believing that this is it for me and I’ll never move again that I’m going to be stuck in a bed the rest of my life.

I Even got my new wheelchair and it’s the bomb, but I can’t even transfer to it. So what’s the fucking point right now!

Fear-Pain-Anger-Depression

I really do wonder sometimes… What’s the fucking point!

[sorry for spelling and or grammar mistakes talk text doesn’t always work exactly as it should]

need sleep...

Anger · Darkness · HELL

Antelope Valley ‘Hell Hospital’ Lancaster, CA

Unbeknown to me the whole ‘issue’ of my horrific stay was closed out February 18, 2010. Yet their reps were still talking to me through March and no one had the BALLS to tell me they had made their decision!!! Supposedly a letter was sent to me telling me all of this. Yup, you guessed it, no letter. And now, the so-called VP of nursing, Karen Loch, is no longer with the hospital. rofl!!! Typical!!! So, they bill me $1453.54 yesterday, from a February stay. Now if it had taken me 5 mos to pay them, I’d be in collections. Yet, they knew they were going to ‘dick’ me and it still took them 5 mos to bill me.

On March 8, 2010 this is what my notes say after my conversation with Karen :

Karen Loch called ext. 5368. She will be doing follow up and once I get all the charges together [after insurance payments] she will get me with the proper people who will take care of this for me.

Funny thing is according to Esther, she already knew it was a done deal and no one was going to help me at all.

For my ordeal, the blog starts here: Hell Hospital

I guess they figure they are some big Hospital that does not need to give a shit about their patients well being. I have been crying since I got the bill as it brought back all the feelings I have been trying to forget. I was de-humanized and belittled and humiliated!!

Time to get my thoughts all together and do something about this…

Blessings and Hope!

Dreams · Health · HELL · Multiple Sclerosis · PAIN · Strength

Hell Hospital – Part 5 going home…

January 29 – February 4 – Antelope Valley Hospital, Lancaster California. Second Floor East.

*********************

Once back and settled in the nurse came into her room and said she was discharged. Her last meds were an anti-D, tummy pill, and a uti pill. Since she was discharged, no more for pain. And she was in some pain. The nurse tech, K, brought her some jello. [had not eaten much in 3 days and was starving] She had asked for, at least, a soft meal before she had to leave. Finally a meal, a regular meal, was brought to her. She had a few bites, but it was making her a tad ill. What part of soft meal did they not get? Bottom line, she was discharged so they could give a shite. After a mix up over a facet block she had thought they were going to do for her degenerative disc disorder, she just wanted out of there and fast!!

Her hubby had to go back home and get their van and her WC. Once he got back, he packed her up and got her into the WC. They said it would be a few before someone could take her out. ROFL!! NO NEED, I have my own chair and am out of here!! Her hubby could not roll her out fast enough.

When she got home she fell into her bed asleep for 6 hours. Upon awakening she had chills, skin crawls, and fear. Withdrawals from 6 days of Dilaudid IV injections every three hours and no weaning down, just sending home. It only takes 3 days to cause this and she was on it for 6. She wanted, needed more. She had Dilaudid pills so she took one along with a Xanax to calm her nerves. After some research on her hubbies part, he found out that Valium is used to help withdrawal sxs from this type of medication issue. In her case, she was lucky. Due to her MS she had Valium to help her sleep when needed. She took it from Thursday night until Monday morning for the withdrawals to finally subside.

Her issue is this, what about those that do not know this or have help for it? Even with the Valium it was a very scary feeling. How can a hospital, any hospital send people home without weaning medications down?? Irresponsible.

But that part of her nightmare was over, she was out of Hell Hospital, through the withdrawals, and home with the people who love her. She felt lucky, but what about those who do not have the support? What do they do? Who helps them through?

*********************

This is the reason for these blogs. I will not back down and they will have to make changes.

I have spoken to the hospital representative and the head of nursing. I’m not sure what they think. They have not contacted me to let me know if anything is being done. I WILL be contacting them back as this is not going to go away. De-humanization, incompetence, and straight out uncaring service should never be tolerated. If I have to talk to the Head of the hospital, I will. If They need me to come in because S says it is not true, I will come in and face her with the truth. I am not under medication anymore, I am still having issues in my heart with the treatment I received, but I will face anyone who says it is not true. The truth WILL prevail.

I am finding me way back day by day. Will I ever be the same ‘me’ again, no. Being de-humanized takes part of your soul from you. Does this make me a weak person? NEVER! I will be strong with the truth and will do anything I need to do to stop this treatment. I will take this all the way.

I just want the ‘nightmares’ to stop…

Blessings and Hope!

***NOTE – my Dilaudid pills have been crushed and put into used coffee grounds to soak the med out and thrown away. After taking the one at home, I wanted them gone!

Darkness · Health · HELL · PAIN

Hell Hospital pt.1

January 29 – February 4 – Antelope Valley Hospital, Lancaster California. Second Floor East.

This will be a series of blogs as so much happened that I am still trying to process my thoughts. I am lost and trying to find my way back. NO ONE should ever be treated with the dis-respect and outright disdain when they are at their worst. I have good, private insurance and[+] medicare, and was treated like cattle. Even without good insurance or any insurance, NO ONE should be treated this way. I was humiliated and I am here to share my story and NEVER let this happen here [AV Hospital] again.

This may have some TMI moments, but in order to help someone without a voice I will let my vulnerabilities show.

***********************************

Per the National Guidelines for medical care – IV Insertion:
No more than two attempts at cannulation per nurse per patient should be done to avoid unnecessary trauma to the patient (Fischer, Knob, & Durivage, 1997; INS, 2000).
All medical personnel, nurses, etc, need to adhere to this guideline by law.

I was ‘poked’ in order to put in a line 12 times. The veins on my hands were fine. But after shoving the line in, pulling out a tad, adjusting, shoving in a different spot, my veins blew. The same thing was done to my left hand next by the same nurse. I count these as 4 times. [2 each hand] She decided to wait for the next shift. REALLY!! Already going into my 4 hour awaiting my treatment for pain. None as of yet. In to the 5th hour a couple more nurses came to see if they could get a line going. Seems my veins are not the best due to medications etc. They tied off my arm about 5 or 6 more times [talk about pain] Tried to get into vein 2 more times, no go. Time to bring in the ultrasound to find a vein.

3 days later

7 days later

They bring in the ultrasound, find a vein on my left bicep and get in a line. I have now been admitted and this hell hole for over 6 hours and finally getting my pain meds. A couple hours later had to go to the bathroom. I cannot use a walker, wheel the iv line and walk, so she unhooked the iv line for the time it took to pee. When she hooked me back up to the line, the vein was gone. My body went cold and I cried. The pain getting this one in was so intense and I was not sure I could do it again. I had heard mention of a pick [?] line, but no one did this. The CN [charge nurse, I think] came in and checked around. After a few, stop the blood flow to the rest of my body tie offs…she found one in my right forearm. OMFG, it was in, it was working, and all was good. Or so I thought…

The next couple of days were fine, IV wise…but somehow I knew it was too good to be true.

Tuesday night…the iv seemed to be leaking when my pain meds went in. Sure enough. So, the RN came in, un-taped it, slid it back in the same spot further, and re-taped! Hmmmm, seemed to work…for an hour or so. The pain and the itch became quite unbearable and my arm had swollen up and became very red. After 2 button pushes for a nurse, one came in and removed this IV. It was now bad. Fear took me over and another chill set in. WHAT THE F*#* NOW!!

The day after…ouch

After a couple more, please just cut my arm off elastic tie offs, no veins found. So, why not get use the ultrasound again?? No answer. An incompetent, cocky lil know it all nurse comes in and acts all cool like. ‘oh, look at me I found a vein!’ She sticks me in what she calls a ‘juicy’ vein in the crook of my right arm. UM NOPE, not in a vein. I do not care that you THINK blood was flowing, not a vein. She flushed it and the pain was as if someone put my arm into a fire. Mind you, this is just below where the other bad line was removed. She tells me it is fine and leaves. They come and give me pain meds and again it was fire and no pain relief. IT WAS NOT IN THE VEIN!!!! First clue you incompetent baffoon…PAIN PAIN PAIN. They never hooked me back up to any fluids, only gave me pain meds…that obviously were going into my arm someone other than a vein.

After a night of Hell and arm pain, I was taken to the GI LAB for my colonoscopy…

GUESS F*#*ing what… the IV WAS NOT IN MY VEIN!!! This according to the nurses and techs in the GI lab!! HELLO!!!!!!!! [sidenote; GI lab was full of professional caring people, the only light in my week of hell]

As the nurse went to add fluids to get my IV going, I started shaking uncontrollably, chills took over and tears flew. I could not control my body. The pain was immense. This was how she found that the IV was not done properly. NOT IN THE VEIN!! She immediately removed it. Now, what do we do?

By now, I just want to go home. I have no more veins, I cannot handle anymore pain, please just let me go home.

please no more

The only place left are my legs/feet. A male tech first tried my left upper foot. OMFG, the pain…WOW!!! No go..

Right foot!! SUCCESS!! Not without pain though. But it was in and it was working well. Sadly, the colonoscopy did not go well so a redo was set up for the next morning. [stay tuned! lol]

The nurses on my floor were not too happy with my new IV, BUMMER!!

niiiiice!!

See what a great job floor 2 did a gr8 job giving me pain meds in my foot IV, this was fun!!! But, this was after I was left sitting on a commode for 3 hours!!!!

**to be continued

As always…

Blessings and hope!