Anger · Fear · Health · HELL · Medical · Multiple Sclerosis · PAIN · Primary Progressive MS · Ramblings · Strength

My soul is tired but my will is strong…

Yesterday was an eye-opening experience for me being out of bed really for the first time since August 18, 2019. I am in so much pain today and sleep did not come easily last night. I now understand fully and completely that in-home therapy is not gonna help me at all. I need to be in a place where they re-train my body to move again and help me deal with the pain in my hips. It’s going to be a process and it has to be hard-core. I was up all night thinking about the night I fell on October 10, 2013 and how everything led up to where I am now. I need neurological physical therapy in a facility, NOT at home. I’m going to need the proper medications for the pain and I need to learn how to move again. When I say I’m like a newborn baby, I’m not being sarcastic. I know it’s hard to believe. 😊 I am now going to make an appointment with the neurologist so he gets on board with my pain management doctor about hard-core rehab. The ambulance service comes early Friday morning to take me to my pain management doctors appointment. I’m scared to death. I was only in my chair for a couple of hours and the edema was so bad yesterday it really freaked me out. I’ve never had it that bad. I know that I’m going to be in a lying down position, but that’s how my legs were yesterday I think it was more about the upper half of my body. I don’t even know how to explain it. What I have realized is if something doesn’t happen quickly I’m seriously screwed. I don’t think it’ll ever come back. I don’t think I’ll ever be able to move right again unless something happens now. They’re hoping that I am too ill and too tired to fight. We all know it’s about money not about anybody’s health or well-being. I am tired. I am fed up. I am so close to breaking. But unfortunately for them, that’s when my strength shows up! This IS life or death for me. That’s not an overstatement! If something doesn’t change quickly I will not be here much longer. My body is breaking more and more every minute I’m trapped in this bed. Somethings got to give!! I know I know this is really in your face. But I will never back down from this because it is my life! I’ll say that again, this is my life! so now it’s time to get all my ducks in their proverbial row, get to all my doctors appointments via stretcher, and bring it! I’m seriously tired just thinking about it. Please universe give me strength!

Wait till they get a load of me! 😈

Have courage and be kind.

Craziness · FUCK · Health · HELL · Primary Progressive MS · Quotes · Ramblings · Strength

It’s the boredom that kills you

As I am lying here trying to find something on TV, everything just hit me at once. My emotions went all over the place. Silently screaming and crying so no one in my house hears me. How long can one lie in the same spot every day? How many books can one person read? How much TV can one person watch? After a while each thing you do becomes boring. You lie the same way at all times as you can no longer roll your body to either side. I’ve actually had people tell me how lucky I am to be able to just lie around all day and have no big responsibilities. Really? 🤔 Maybe for one day or possibly even a week, but 6 years 3 months and counting… You must be fucking ridiculous! Mental torture is 100% accurate! When people tell me they can’t imagine, they have no idea what they would do, they could never cope, etc. They are 100% correct. They can’t imagine the darkness that goes through my mind every day. They have no idea how many nights I pray to whatever entity is out there to take me home. They couldn’t cope with realizing that death would be a beautiful freedom.

Sometimes I wonder which is more crazy, the thoughts that go through my mind or the fact that I stick around for them. My favorite ‘people’ are those that say, “No you’re not going crazy you’re just upset with your situation.” Oh how lovely that would be if it were that simple. I would love just to be ‘upset’ with my situation. That would be much easier to take. 

Have courage and be kind.

*** just a little FYI, I’m just venting and I hate having to add that but some people, the people that don’t know me, take some things I write in the wrong way. 🙄 If I didn’t get my feelings out, then I’d be worried. Thanks everyone… 



Anger · Medical · Multiple Sclerosis · Primary Progressive MS · Ramblings · Sarcasm · Strength

Round and Round We Go

I’m probably the only bedridden person that can actually jump through hoops. Actually I’m probably not. I got an email, not a phone call, giving me the same information regarding non-emergent transport. Not sure he actually spoke with them regarding accepting Blue Cross as only one of the three actually accept this insurance. I completely understand why the other two don’t, as Blue Cross doesn’t pay! That in itself is disgusting to me. I was told once I found one that could help me that I should call to get pre-certification. Today I did that with the one company that actually takes independence blue cross. But alas, it is not I that calls for the precertification. I called the pre-cert phone number which took me to Accolade, not Blue Cross. Accolade informed me that I need to go through my doctor to show proof that I need an ambulance ride to and from my doctor to be allowed this service. You know being taken by stretcher to and from my doctors. Yeah, because everyone wants to go by stretcher to their doctors appointments. Are they fucking kidding me?! The Accolade rep did help me out by calling and taking care of all of this BS for me. The first person that actually helped and has done what they say they’re going to do. And she isn’t even a Blue Cross employee. As of now, I have an appointment on the 28th and will be picked up at 7:30 AM so I can finally see my doctor again. But, I’m not holding my breath.

I wish I could say that I am no longer stressed regarding this, but this is only the beginning. I need to get to my neurologists office as well as my urologists office. I had to put off surgery to remove all the bladder stones because of my inability to get out of my bed. Yes I will say that again, I had to keep putting off my surgery because I could not get out of my bed and was turned away from Independence Blue Cross for inpatient rehabilitation. I wonder, do I have to go jump through these hoops every fucking time I need to see my doctor(s)? Do I need to prove that I need to go by stretcher again and again? I truly am disgusted by Independence Blue Cross. ^^ Me, every time I have to talk to these people and every time I have to send an email when they cannot return an actual phone call. And I will say it again and again, how the fuck do these people sleep at night knowing that they are withholding care from another human being that needs specific care?! I will get my inpatient rehabilitation! I will get the care that I need! I will not allow this despicable company to be in charge of my health care over my own doctors!  People we need to stand up and say no more! We need to write to our representatives, call them out, acquire an attorney if needs be, we need to say… We are not going to take this any more! Do I seem angry, a little pissed off… You have no idea! 

Have courage to those who try to keep you down, and be kind!! 

Anger · Health · Medical · Multiple Sclerosis · PAIN · Primary Progressive MS · Quotes · Ramblings · Strength

Down with the Sickness Tuesday

Yes we do. My daughter was diagnosed with type A flu yesterday. People at my husbands work we’re also diagnosed type A flu. On Sunday I was not feeling very well. Yesterday my fever was going from 100 up to 102 and finally broke at 2 AM. NyQuil take me away! Oh that stuff is the bomb. You need nothing else.

Unfortunately I’m pissed. I called my neurologist because in the 23 years I’ve been going to him since diagnosis, I’ve always been told to call when things like this happen. Being that I have a compromised immune system and I’m over 50 the type a flu can be dangerous. I put in a call to my doctor last night. The receptionist said, “You know this is a neurologist office right?” No really? Oh my God I had no idea! 🤦🏻‍♀️

I felt like saying you know you work at a neurologist office and things like this can be very dangerous for people with a compromised immune system. But, I didn’t. She sent me off to leave a message with my doctor’s nurse. I left a message I heard nothing back. I just called a little bit ago I left another message. A little more blunt and to the point. When (If) they call back I’m also going to remind them about a medication refill I called about sometime ago and a fax that they needed to send out for me. Neither happened. I would’ve forgotten about those things if this hadn’t happened and upset me so. After 23 years with this doctor today I’ve been looking for other neurologists. I really need to get to UCLA but until I can get out of my bed without pain, I don’t think my insurance company will cover a non-emergent transport. What do people like me do? How do people that are bedridden get to the doctors and get the help they need? Sadly, I don’t think it matters… sadly I don’t think we matter…

Have courage and be kind!

Fear · Multiple Sclerosis · PAIN · Primary Progressive MS · Quotes · Ramblings · Sadness · Strength

Sunday Feelings

When I first saw this picture sometime ago my eyes filled up with tears. I came across it again this morning. It had a different quote on it for multiple sclerosis but it was very grainy and looked terrible. 🤷🏻‍♀️ I did a Google search and the image popped up with the other quote and a blank picture. I felt the need to add my own quote to this powerful powerful image.This picture sums up my life completely. we need a cure! I just hope one is found in my lifetime before it is too late for me.

Have courage and be kind

*** if anyone knows the creator of this amazing picture, please let me know. I’d like to give credit where credit is due.

Anger · Fear · Multiple Sclerosis · Primary Progressive MS · Quotes · Ramblings · Sadness · Strength

Depression and Fear are Paralyzing

The past few days have been hard. The stress from the denials and all of the subsequent appeals and the denial for the ER and then the reprocessing of that claim… It has been hell. My last MRI showed that my PPMS was not active. That MRI was about or year to a year and a half ago. I don’t even remember because my mind right now is scrambled. Yes, I could look it up, but quite frankly I’m not going to because I’m fucking tired. I get it, I’m in bed 24/7 so how can I be tired, right? My body doesn’t even understand awake and rest anymore. It’s not sure if it’s supposed to be up or down. I’m never comfortable anymore. There’s always pain. I’m not a neurologist and I haven’t had a recent MRI, but I know that my PPMS is active again. I believe it’s been happening over the past couple weeks or so. I have no energy at all. It’s hard to lift my head at times. I am so scared that I’m not sure what to do anymore. So I find these motivational quotes on an app that I thought might help me.I have courage, I haven’t given up on myself, so when am I going to be cut a break. These motivational quotes don’t work for everyone. I know, I know, if I look really hard it can work for me. 🤦🏻‍♀️ Sorry if I’m not miss optimistic right now. Most likely it is BECAUSE of my recent conversation with Independence Blue Cross. 

It seems that I am also going to have to fight, a.k.a. jump through hoops to be able to get to my doctors appointments. I haven’t been able to get out of my bed for so long (OK we did finally get me up for a shower last Saturday. But, it’s NOT gonna happen again because I can’t go through that pain again) I haven’t been to my doctors since before August 18, 2019. (my wonderful ER visit) So the gentleman from Independence Blue Cross found me a couple of non-emergent transports that they will cover in network that can possibly take me to my appointments. All I have to do is call these places to see which one will do it, ie; take me pick me up blah blah blah. Then I need to find out when they’re available, an appointment for my doctor, not in that order, and then… Look on the back of my insurance card call the number to make sure I can get pre-certified for this non-emergent transport. Are you fucking kidding me! I guess this happens to a lot of people if they actually made a meme for it. He also gave me the names of in-home physical therapy companies that I can call and see if they might be able to help me. Once I find a company that I feel comfortable with, I need to get to my doctor to have my doctor send in the paperwork to hopefully get in-home PT. 😳 I don’t think that the people realize at Independence Blue Cross the amount of pain it causes me to have my legs moved in to their proper position. It’s not like I haven’t explained it to everyone, it’s because they don’t give a shit. They don’t seem to understand that with these type of muscle contractures that I have, it needs acute inpatient rehab so you are monitored with the proper pain medications. but as we know it’s all about the money. And because their rent-a-docs feel inpatient is not medically necessary for me, I get to go through excruciating amounts of pain with in home PT. 🤬

But, I am going to play their stupid silly little games. I am going to jump through their stupid silly little hoops. What they don’t understand, or maybe they do, is I’m not going to be quiet about any of it. This happens to too many people too often. For fucks sake’s they’re running my husband’s medical care as well. But, I digress, that’s a whole other blog that I will get into very soon. 😏

So this is where I’m at right now. I haven’t been sleeping because I cry so often I can’t breathe as my whole head gets stuffed up. And quite frankly, if my PPMS is active again, it’s on Independence Blue Cross for not letting me get the health care that my doctors are trying to get for me that I need!!! Yes I completely know that I have a bunch of run on sentences, so sue me. I have never once claimed to be a writer. That’s my baby sister.

I’m sorry if it’s getting monotonous regarding my health care insurance, but I am that squeaky wheel and I cannot be quiet anymore. As always, have courage and be kind.

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.



Politics

Conflict of Interest?

Is it or isn’t it?

One of Obama’s economic advisors is the CEO of GE. So, obviously he deals with financial issues etc. Well, what about healthcare? GE is partners with United Healthcare and who knows how many other health care biggies.

Right now we use United Healthcare. It is terrible. They constantly deny me treatment and/or medications. After stressful fighting with them and getting appeals going I finally get the things i need.

I guess I should explain that my husband works for a company owned by GE. As of next year, the health insurance is changing, again. In the past 5 years it has changed 3 times, this will make 4. Now, isn’t a big part of Obama’s presidency to ‘reform’ healthcare? Does President Obama know what his ‘friend’ Jeff Immelt is doing to his employees in 2010? Is the ‘reform’ going to STOP big CEO’s and big insurance companies from killing us with their healthcare policies?

In 2010, our insurance is almost going to be like car insurance. The more you pay, the less your deductible. The lowest deductible is 2000.00 per family member. This is to be paid first, then they will pay 80% up to 3500.00, then you get full coverage. And then add what we have to pay for the insurance [4000.00]. WTF!! And, we have no idea about medications. Will the employees be getting raises to help with the high cost of their health [insurance]?? OMFG, roflmao! Hell no!

Now, there is a meeting for the employees to ask questions and voice their concerns. No one wants this, but they do not give a shit. The plan now, does not give GE enough money, so they have found a way to shove the knife in deeper. The meeting is just to appease the masses! HA!

I really want to believe in Obama and his promises. Anyone was better than McCain/Palin…but now I’m not so sure. My faith in my country started going during our last presidency, now I’m not sure what I have to hold on to anymore! Come on Obama, tell this money grubbing POS to STOP! Tell the insurance companies to STOP raising their prices. Stop all the frivolous lawsuits!

I may now have to go on MediCare. I do not want to, but my doctors told me they prefer it. They do not have to answer to the ins. companies for authorizations, they are not second guessed, and their patients get their care in a timely manner. So, maybe I should go on MediCare. I am so completely at a loss right now.

Why is it that members of congress, the senators, etc. get healthcare for life whether they are in office or not? Yet, we as Americans get shit on at every turn. We pay our taxes, we are good citizens, but since we do not have the ability to ‘grease’ the hands of politicians we get shit on.

We live paycheck to paycheck as many do. We own a home, we have two vehicles, and we have gr8 credit. We pay our bills on time…I am just so flustered over all of the BS going on.

So, I ask you President Obama, how can you allow people who work for you to do this to their employees? I want to believe you will bring about the change this Country has needed for the last 20 years. Well, will you?

Blessings and Peace!

Ramblings

A great article from Truthout!

Truthout.org

Being a person who lives with a disabilty, healthcare is a very serious area for me. I have private insurance and still have to jump through hoops for care with my insurance company. Meanwhile the rates are raised consistently. It took 8 months to be paid for my power wheel-chariot. 8 MONTHS!!

Then, constantly denied medications and/or tests until my doctor calls their rent-a-doc to get permission! WTF is that about? I think my doctor knows a hell of a lot more than their over the phone, who the hells knows who they are, what are their credentials, rent-a-doc! This is ridiculous to me.

The article, IMHO, shows what all the problems are about. The big M word; Money!!

Blessings and Peace to all!