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.

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

Manic Monday – Insurance Saga

My lastest dealings with Independence Blue Cross was all about getting phone numbers from the representative at IBX  for non-emergent transport, PT places etc. Today I made my appointment, far in advance, for my pain management doctor. I called the non-emergent transport companies that were given to me from Independence Blue Cross. I know, redundant, here’s why… The first company I called told me they no longer take Blue Cross insurance. The second company I called said they no longer take Blue Cross insurance because they never get paid from Independence Blue Cross insurance. 😳 The third company said, you have to call the week of your appointment and then there are no guarantees that there will be availability. OK well that’s just fucking fantastic! So let’s recap; the phone numbers that I received from the representative at Independence Blue Cross were ALL dead ends. Now I could pay cash for one of them which would be $283 upfront and then $75 an hour for however long it takes for your appointment. Alrighty then I guess I’ll just pull that cash out of my ass. So tell me what the fuck is the point of having health insurance if it doesn’t help you. We pay thousands of dollars for this insurance and at this point they basically have told me to fuck off and die in my bed. I’m not even going to get into calling the physical therapy places, because talking to those people dropped my IQ many points. I just needed to know if they’ve dealt with people that have contractures things like that. Not one of them could answer the question. It was as if they were reading off a script, “All of our physical therapists are very good. They do their jobs well.” OK good for them, that’s not what I fucking asked you. 🤦🏻‍♀️

My first reaction to all of this this morning was to completely snap. But I held it together. I took deep breath’s and started uncontrollably laughing. I am so angry right now there is no way to even measure the anger that is boiling up inside of me. I know more than anyone, that it’s not good for me blah blah blah. But come the fuck on… Cut me a fucking break… Why can’t one thing work out for me like it’s supposed to. Why??!! I’ll tell you why, INCOMPETENCE!! I’m dealing with people that are reading out of a notebook that the insurance company gets them. I’m dealing with people that have no humanity. I’m dealing with people that would be happy if I just took it and died. Well I have news for you Independence Blue Cross, I’m not going anywhere in fact I’m going to be your worst fucking nightmare! This right here is the end of my rope. Please believe me when I tell you, you really have no idea what you’ve done! 

And as always, have courage and be kind! 

Anger · FUCK · Health · Medical · Multiple Sclerosis · Primary Progressive MS · Strength

Manic Monday – Insurance Saga

My lastest dealings with Independence Blue Cross was all about getting phone numbers from the representative at IBX  for non-emergent transport, PT places etc. Today I made my appointment, far in advance, for my pain management doctor. I called the non-emergent transport companies that were given to me from Independence Blue Cross. I know, redundant, here’s why… The first company I called told me they no longer take Blue Cross insurance. The second company I called said they no longer take Blue Cross insurance because they never get paid from Independence Blue Cross insurance. 😳 The third company said, you have to call the week of your appointment and then there are no guarantees that there will be availability. OK well that’s just fucking fantastic! So let’s recap; the phone numbers that I received from the representative at Independence Blue Cross were ALL dead ends. Now I could pay cash for one of them which would be $283 upfront and then $75 an hour for however long it takes for your appointment. Alrighty then I guess I’ll just pull that cash out of my ass. So tell me what the fuck is the point of having health insurance if it doesn’t help you. We pay thousands of dollars for this insurance and at this point they basically have told me to fuck off and die in my bed. I’m not even going to get into calling the physical therapy places, because talking to those people dropped my IQ many points. I just needed to know if they’ve dealt with people that have contractures things like that. Not one of them could answer the question. It was as if they were reading off a script, “All of our physical therapists are very good. They do their jobs well.” OK good for them, that’s not what I fucking asked you. 🤦🏻‍♀️

My first reaction to all of this this morning was to completely snap. But I held it together. I took deep breath’s and started uncontrollably laughing. I am so angry right now there is no way to even measure the anger that is boiling up inside of me. I know more than anyone, that it’s not good for me blah blah blah. But come the fuck on… Cut me a fucking break… Why can’t one thing work out for me like it’s supposed to. Why??!! I’ll tell you why, INCOMPETENCE!! I’m dealing with people that are reading out of a notebook that the insurance company gets them. I’m dealing with people that have no humanity. I’m dealing with people that would be happy if I just took it and died. Well I have news for you Independence Blue Cross, I’m not going anywhere in fact I’m going to be your worst fucking nightmare! This right here is the end of my rope. Please believe me when I tell you, you really have no idea what you’ve done! 

And as always, have courage and be kind! 

Anger · FUCK · Health · HELL · Multiple Sclerosis · PAIN · Primary Progressive MS · Quotes · Ramblings · Sadness

Weird Wednesday

I was cruising the Internet and this picture popped up. It’s not meant to be sad it’s not meant to scare anyone. But I’m not going to spend another six years and three months in my bed. Without help, proper help, I’m never going to get out of this prison have a bed. My ankles suffer from dropfoot and contractures. My knees haven’t been able to straighten in about three years. And my hips I can’t even get in my Hoyer lift because of the pain. This has been going on for a very long time now and nothing has changed. I really thought my time in rehab in 2018 was going to save me. I fought so hard I did so well, then nothing. How do people that are bedridden see their doctors? I know they can call non-emergent transport, then try to coordinate that with their doctors appointments but first they have to make the calls to make sure it will be approved. Really? Making something hard even harder.

I wish I could be the shiny happy person that people want me to be. But that’s not gonna happen. I’m angry. I’m pissed off. I get it life‘s not fair blah blah blah. You know the people that say that to me… People with no chronic illness. I guarantee they wouldn’t last one day trapped in their bed not able to even get up to go to the bathroom, be able to roll over in their bed, or sit up without help. They would break the first 20 minutes.

Tears! 😂😂😂 No, if you could read my mind you would be screaming at the top of your lungs for help. I am so angry and I know that anger doesn’t help. But when every year it just gets worse, sorry I can’t put on that smile every fucking day for you. I’m angry about people who I see complaining all the time about the tiniest little things. Yes I’m an asshole. I can’t sugarcoat shit every fucking day. I really just want it all to end. I really really want freedom. I’m so tired of being in prison for a crime I never committed.

Have courage 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!

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.

Anger · Craziness · 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!

Anger · Fear · FUCK · Health · HELL · Hope · Love · Multiple Sclerosis · PAIN · Primary Progressive MS · Ramblings · RANDOM

Broken

So this post might be a little long. And you don’t have to read I’m just trying to get out what I’m feeling. We are going to attempt a shower today and I’m already having anxiety. But I have to do it because PTA bed baths are not doing it for me. 😋
I just don’t want to roll over or get in that fucking Hoyer sling. It hurts so much even when I have a nice supply of cannabis on board. 😉
Some of you know I have another fracture in my back at L3 and I was supposed to see a spinal surgeon like last month, but I can’t. I don’t want to go because I don’t want to get up. And the worst part about that is, I really want to get up! I know that does not make any sense. LOL

Without help I don’t know how I’m going to ever be able to get out of this bed. But, I will keep doing what I’m doing like wiggling in the bed LOL I have some serious dance moves for someone who is in bed. 💃🏻 I just want out of it. But when I’m lying down or even when my legs are up and I’m elevated I don’t have any pain. So thankful for my adjustable bed. 🙏🏻 The minute someone moves my legs I literally want to die. It feels like my hip is going to snap and my leg is going to fall right off. Sounds like something out of a criminal minds episode. Childbirth wasn’t as painful. I will take a contraction over this any day. 😳


We rolled a couple of pillows and taped them and put a cover on to jam them on the outside of each leg to roll my hip as I’m lying down. Oh holy man! The first day I could only tolerate about five minutes because the pain was intense. But yesterday I actually kept them there for a few hours. I’m hoping that eventually I will be able to get my legs moving without pain. I don’t care what the doctors say and what my MS is going to do with me because I know if I can get rid of this pain I will be up again. I may never walk again but I will be able to transfer if I can just combat the pain. And thanks to my colostomy and urostomy I won’t have to worry about running to the bathroom every five minutes anymore. 😂 Statistically the odds are against me but I’ve never been a fan of statistics. LOL Do not tell my daughter that because that is what she graduated with honors in. 😜

I’m putting on my little arm weights more because I totally slacked off on doing my arm exercises because depression hit it once again. But my little inner child showed up and beat the crap out of depression. Hopefully it’ll stay away a little longer this time. 🤞
When things got really bad after my surgery in 2014 and I completely fell into a very dark place. The surgery almost took my life and at that time I wished it had. I think a lot of people thought that it was getting to the point where I was nearing the end. I felt it, I even had a doctor tell me my outlook was grim. It wasn’t until February 2018 that I woke up. That anniversary is coming up and it scares me. But it also reminds me that I can fight and can get better. I just want people to know don’t give up on yourself no matter how bad it might be! I have been to the depths of hell and I’ve tried to leave a couple times. For some reason they didn’t want me. LOL

Well now that I’ve written a book and I probably lost most of you after the first paragraph I am going to get myself pumped so I can take my shower and not be afraid. 💪👊

I’ll be back… Said in my best terminator voice. LOL
Have courage and be kind!

Anger · Multiple Sclerosis · PAIN · Primary Progressive MS · Ramblings · Sarcasm

Everything happens for a reason…

 

This everything happens for a reason crap I have a hard time with. There is no good reason that my sister died from cancer, there’s no good reason that I have friends that deal with MS and also cancer. 

There is no good fucking reason that I am bedridden and deal with so much shit on a daily basis. So I am sorry but, everything happens for a reason, is a bunch of bullshit!

And it has nothing to do with faith so don’t bring that crap into this. 🤦🏻‍♀️

And the bottom line is when that “reason” happens, it better be me getting out of this bed standing up and walking all on my own.

People tell me all the time that maybe my reason for this is because I’m vocal and I make people feel like they’re not alone and I can inspire people. Honestly I would do that before I didn’t need for this to happen to be there for others and to help others. So that’s kind of a mute point.  Oh the joys of life! 🖤

Have courage and be kind!