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

Hope can be paralyzing…

My favorite quote was once:

When do we finally say enough?

I’ve been trying for six years to get out of this bed. I thought I had a chance in 2018 and as you’ve heard, Independence Blue Cross took that away from me. I have to let go of hope because it has broken me. It has, paralyzed me. I was taken right up to the edge of hope and slowly watched it all fade away time and time again. How much longer do I lie in this bed? How many more nights do I cry because of the pain in my legs? It’s a torment I can’t break away from. It’s a nightmare that I can’t awaken from. I just really want to get off this ride because I don’t really like it anymore.

Then I see these quotes ^^ and think, I get it but for some of us our present situation is our whole life. There is no best yet to come without help, and I can’t get that help. I get it, I have breath, but breath is not life. It’s an existence that I’m tired of living. I am a literal, head in a bed. I’m tired, I’m tired, I’m so so very tired…

Have courage and be kind.

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

Oooo Ooo Memories

Another Facebook memory popped up. Wow… I was working so hard, and for what? Independence Blue Cross kicked me out after 30 days. At that time I’ve been bedridden for over 4 years. Did they really think it would be that quick? Their doctors truly are incompetent if they don’t understand what happens to a person’s body that’s been bedridden. They obviously don’t because they denied me life-saving care. And again when I say life-saving care, I’m not over exaggerating. At this point I’ve been in this bed over six years. I’m not going to spend another 6 years in this bed. And whatever happens, it is totally on them. Good or bad…

AnyWho… On to the memory:

Hello to all my amazing friends. I’m asking yet again for your help. Tomorrow is the big day when we find out if insurance will give me another week. Please keep me in your thoughts, blessings, prayers, cross your fingers and anything else you may do. I’m trying to keep positive and send out good thoughts to the Universe.🤞🏻

I’ve made some excellent strides in the past two weeks. While I can sit up unattended by myself, and my legs and arms have gotten back some movement, I still need to be able to transfer on my own before I go home. I’m still not able to get up into the sitting position by myself and I still cannot hold my weight on my legs. It’s like they’re explaining to me, I was completely bedridden for four years. It’s not going to change overnight and I have to keep positive thoughts for a good outcome.

I’m one of those people that wants it done like yesterday. 😜 Type A personality all the way.

So send me some good juju and hopefully tomorrow I’ll have some good news! 🧡 No matter what happens I will continue to fight the MonSter that is MS.

#MSWarrior #PrimaryProgressivemultiplesclerosis

A little sidenote, if there’s any wealthy beneficiaries out there, hook a girl up with some real care. 😏 OK, just kidding… Or am I?

Have courage and be kind.

Hope · Multiple Sclerosis · Primary Progressive MS · Ramblings · Strength

I had so much hope…

The following is from a Facebook post I wrote exactly 2 years ago today when I was at the rehab Institute at Palmdale regional Medical Center. If Independence Blue Cross had not forced me out after one month I would not be fighting to get the proper care that I need! I found out that if they had asked to put me in a nursing home for rehabilitation they probably would’ve covered it. A nursing home!!! Are they fucking serious! You get maybe 20 to 40 minutes of rehab. In the acute rehab you get 3 to 4 hours. I am so angry because Independence Blue Cross took my life from me when they made me leave. Trust me I’m not naïve. I know it’s all about the money. Or possibly the lotto where they throw your name in a hat and decide who gets care this month. They don’t want us to get well they want us to die. I know I’ve said this before, but how can anyone consciously deny someone life-saving care. I just smile and the fact that, Karma is a bitch and she doesn’t forget. Okay… I got off track. 😜 Again the following is from my Facebook post from two years ago today:

I think I need to say something due to some private messages I am getting. What I’m doing is NOT a cure. There is NO cure for multiple sclerosis at this time. What I am doing is making me feel better mentally which is helping me physically. 💪🏻

I have primary progressive MS. Only 10% of people with MS have my type. I was diagnosed in August 1997 so I know what MS is and what it does to a person. I am not new to this. I was told from the beginning I would get worse it’s progressive and there was nothing I could do about it. So I listened to everyone and believed what everyone said. I basically gave up on me and the person I was and became MS. I feel the need to say it again, I know what MS is and how it affects people. I’m living it.

Some people say it’s hereditary. I’m the first in my family on both sides to have anything like this and I really hope it stops with me. I fully believe when you have MS you have had it your whole life. It just takes something dramatic or life-changing to bring it out. That’s my opinion only but that is how I feel about it.

I basically laid down and let it take me over. I know that my MS is progressive. I know it will always be with me until the cure is found. But I also know that by being in this program I am getting muscles back. I am moving again.

I cannot stress enough how bad I was before this. The last four years I literally never left my bed. The only time I would leave was to go to doctors appointments and that was rare. I was paralyzed from the waist down. My legs did not move for the last four years. When I went to the ER on January 16 my arms had stopped working as well. Only my right arm worked a little bit. On that night I made the choice to not end my life and to get help! It took me losing it in the ER at the doctor for them to finally listen to me. And the doctor did listen and he got me help and now I’m here!

As most of you have seen I am moving my arms now and I’m beginning to get back some of what I lost from my waist down and it’s only getting better. I am done listening to the doctors and to other people that it (physical therapy etc.) won’t change anything. This therapy I’m in IS changing everything! They know I have MS and they are working it around me. Last night I woke up and the MonSter that is MS tried to come through. I told it to get the fuck away from me, that this is my time now. This morning I worked through the feeling and I made it. 👍🏻

MS is different for all of us. But what I’m doing is helpful for all of us. It’s never a bad thing to keep moving. The old adage, move it or lose it, I learned the hard way that it is true.

So, again, I know this is not a cure. But what it’s doing for me mentally is completely amazing. I forgot what it was like to be positive. I have surrounded myself with negative for so long that I thought that’s how life was. It’s not!

If sharing my story helps even person, my journey (even the excruciating pain) will be completely worth it! 🧡

#MSWarrior #NeverGiveUpHave courage and be kind.

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 · 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 · 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.