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

The human body truly is an amazing thing.

While I await more rehab through my insurance, I am having a private Physical Therapy. It really sucks when you have to pay for some thing out of your pocket to keep it going when you pay thousands to have healthcare insurance. I’m hoping this will be taken care of within the next couple weeks and my insurance will pick it back up. I knew I could not stop for the little bits that I’ve gained would be lost. I’m very thankful to my stepmom or as I call her, mom, for taking care of private sessions for me.

I really believe that I will be able to get back into my Hoyer lift and into my chair within the month of July. I’m realizing there are some medical issues I will have to get taken care of as well. Both of my knees have frontal torn meniscus’s. This causes some serious pain when bending my knees. But we are taking it slowly and the pain is lessening. I should’ve had these problems fixed years ago, but they would not fix the issue that caused the problems. My doctor told me insurance would not cover it because of my illness and the fact that I spent a lot of time in a wheelchair. So basically every couple years I would just have to get these surgeries to put a Band-Aid on the issue. I had already had one surgery to fix the issue and now I was going to need another one… That’s another story for another blog.

My body lets my physical therapist know when it’s had enough. My leg will literally stop any movement. If that makes any sense at all. It truly is amazing how the human body works to protects itself. I am learning the saying, move it or lose it, is so very true. I’m doing everything I can on my own to move my legs as much as I can, and my husband is also trying to help as much as possible. He has his own back issues and it causes him a lot of pain helping me. So it’s a lot of moaning and groaning going on as he moves me around. Old people problems. 😜

Patience is something that I have to work on. It really isn’t one of my virtues. I am learning and I know that it took 6 1/2 years to get to this place so it’s not going to be fixed overnight. This time I will not give up. This time I will not give in. This time I will fight for my life!

Have courage and be kind. 

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

You’ll get through this!

I have made it through a couple times where I didn’t think I was going to make it. I wish I could say that it’s going to be OK, but I don’t know. I’m trying really hard every day and hoping that something is going to give. I just can’t go another 6+ years in this bed. I’ve had to learn patience, which has never been one of my virtues. I really want to stay positive but I don’t see me getting the help that I need. I’ve been in this bed for over six years and my body has, well, died in a sense. It’s going to take a lot of time and a lot of hard work to make my legs go back to a normal position. Unfortunately, we don’t have the money or the good insurance to get the help I need. And in this moment in my life, unless you’re trapped the way I am trapped, I understand you’re not going to understand. I know, blah blah blah. I just needed to vent it out. I’m struggling, but I’ll get through this. I’ll get through this to wake up trapped again. But, I’ll do it because that’s what everyone wants. OK, that didn’t come out the way it was supposed to, but I think some of you understand.

My legs are jacked the fuck up. I can’t straighten my knees or bend my ankles properly. I’ve been stuck in this bed for so long as I sit up, in my adjustable bed, I get dizzy. My body has literally died being in this bed. Ten to twenty, and I’m being generous, physical therapy visits won’t do anything for me. I can’t sit up unless I have help or something is behind me. But like I’ve stated before, Independence Blue Cross took me out too soon from the rehab. I was sitting up on my own. But when you get kicked out of rehab and you get no good in-home physical therapy, it all goes away.

Yes I know it’s obvious I’m struggling. I just am not sure how to wrap my head around it all. I can’t see the light at the end of the tunnel anymore and that’s what scares me. But I’ll keep fighting and hopefully one day it will take me to where I need to be.

I’m sorry if it’s all over the place right now. But I can’t get my thoughts in order so, there it is.

Have courage and be kind.

Happiness · Medical · Multiple Sclerosis · Primary Progressive MS · Quotes · Ramblings

FaceTime visit with my doctor!

I just had my FaceTime with my neurologist. He is going to get with Dr. Nasser (pain management doctor) to discuss rehab options. I’m not going to worry about that right now because with everything going on coronavirus wise, it’s going to have to wait anyways. Once all this is said and done though, he and Dr. Nasser will most likely be going after my insurance company to give me the care that I need in order to save my life! 

I told him I want to reevaluate my fracture at L1 and he said we will definitely look into that. I think I’m gonna have to look into that on my own because it’s kind of everyone’s neglect that they didn’t notice it when I fell 6 years ago. 🙄 So I think that’s gonna be for me to figure out. LOL I also need to find an Osteo doctor because I also have a fracture at L4 that shouldn’t have happened. So I need to have my bones checked. That sounded a little kinky. LOL

We have a follow up in June. 👍 So now that that’s out-of-the-way, both my main doctors, I will be looking for some good mental health clinics and/or physicians.  I have called a couple but of course none of them take my insurance. 😡 I’m not giving up because I know I really need to be able to talk to someone.

I hope every person reading this is having their best day possible.

Have courage and be kind.

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

Mommy pay attention to me!

My appointment with my pain management doctor went well yesterday. We are looking into at home rehab, when the world isn’t so crazy. I decided that I will talk about a baclofen pump. I really did not want anything else embedded into my body, but if it helps me get through my leg spasticity and helps with pain, I’ll do it. I was just concerned because I already have a PowerPort, my colostomy, and of course my urostomy, on my and in my person. I have to do what helps. We are going to work very hard on getting my legs used to sitting in my wheelchair. The swelling is awful when I sit for too long. I am finding that as long as I have my Forrest Gump shoes on it is not as bad. I will have to invest in some good compression socks. With my husband home for a while, thanks to COVID-19, we’ve been trying to move my legs more and more every day. It will be a process because I have been stuck in this bed for six years.

I have my neurologist appointment today at 1:45 PM. That was very cool of them to get me in right away since yesterday they had to cancel. Thankfully their computers are back up and working! I have my list of questions that will be open and ready when the call comes through. Wish me luck! 

I contacted JS at Independence Blue Cross today regarding my transport to and from my doctors as I received another explanation of benefits saying it was denied etc. It seems he is taking care of this and I will wait before sending my appeal in. if you’re reading this JS, thank you! 

This is my baby girl who never leaves my side. She is wondering why I’m not paying any attention to her today. But I’ve had some things to do this morning. 😁 I know that once she gets her c-o-o-k-i-e she will be very happy. I have to spell it out or she would’ve known exactly what I was saying. 

Now I have some time to surf around the Internet before my appointment. I can’t believe I have gotten everything done before noon. I even ate breakfast and had my coffee. I did have a little bit of a low last night. A big shout out to my husband for talking me down. I love you more than my luggage! I hope everyone is having their best day possible. If not remember it’s just a bad day, not a bad life.

Have courage and be kind.

Health · HELL · Multiple Sclerosis · Primary Progressive MS · Quotes · Ramblings

To the people that I cherish so much

I feel I owe explanation of what’s going on with me. In August when I was denied rehab my heart broke and my mind fractured. When I got the explanation of benefits for the ambulance ride that was denied I felt completely betrayed. Jason Sweeney the executive at Independence Blue Cross, gave me those names of those companies to take me. Then after I was taken to my doctors he explained they don’t cover that Service. I have a very hard time dealing with incompetence and stupidity. And now I’m having a very hard time continuing to live the way I do.

I no longer want to exist. Let me explain when I mean by that, I can no longer live trapped in this bed for another six years, another 20 years. The pain I suffer on a daily basis is enough to make me want to leave this earth. I came very close two days ago to leaving. Moving my toes hurts, raising my arms hurts. It’s as if there is no end in sight. As of right now I can barely even move my arms. Thank the universe for talk text. I think that’s when it all came to a head.

Now I will backtrack a little bit to maybe help explain more of what’s happened to me in the last two years.

In February 2018 I came to the conclusion that I did not want to live. In that instance I called an ambulance and said I needed help. To make a long story short they got me help. They got me in the acute rehabilitation center at Palmdale regional. For one month I was there and I was getting better. But Independence Blue Cross decided they didn’t need to be there anymore so they kicked me to the curb. A couple times in-home therapy came but unfortunately he rarely showed up and when he did, he did nothing.

August 2019 we were trying to transfer me for a shower we got me in my Hoyer lift and the pain was so bad I thought I had broken another bone in my back since I already have two fractures. Thankfully there were no breaks but while I was at Palmdale regional Medical Center we tried getting me back into rehab there. Independence Blue Cross denied the request even though a previous they approved it.

So this doesn’t go on till the end of time, here and here are more of the backstory of trying to get into Palmdale regional medical center.

I will be sending this along with my denial letters (with highlighted comments and lies from Independence Blue Cross) and other correspondence to anyone who will listen. LA Times, NBC, CBS, ABC, Oprah, Montel Williams, Ellen, anyone that would like a good story on how insurance companies knowingly and willinglywillingly kill The people that rely on their care. I will also be doing research on how many people have perished because of Independence Blue Cross.

But again, I will not live another six years in this bed. Understand that as you will, but I am not living already. I’ve been dead inside for six years.

Have courage and be kind.

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

MS Awareness Month day 29

I know that living in the past or thinking about the past is something that we should not resign ourselves to do, but I really do miss who I was before. I was someone who loved working. Grocery shopping, in my book, was one of the best things to do. I know, I’ve never said I wasn’t a little strange. But, laundry is what I really miss doing. And no, I’m totally serious about this. I think it’s all about the fresh smells, the warm clothes right out of the dryer, and even the act of folding things was fun for me. The weird thing is before I never thought about any of these things. I never realized why I did not mind doing these things. So I guess MS has taught me to look at things in a different light, a different perspective. Out of all these things I miss, driving is definitely the one that kicked me down the hardest. Driving was an escape, freedom, something I loved doing. When I lost that privilege, I was broken for quite some time. I could say that I will never drive again because at this point it’s probably true. Instead though, I can keep wishing and hoping that one day I may drive again. Yes, again I’m pretty sure I’ll never drive again, but it’s always so lovely to dream. 🖤

So as I wrote the above I kept thinking to myself, what I really miss is being able to do ‘anything’. We’ve been trying daily for a shower and it still has not worked. I did have a really good bed bath though, so I do get clean. 😇 We are starting slowly with my husband rolling me over on my side for 20 minutes to a half hour. It really fucking hurts, but each time it seems to be getting a little easier so maybe one day it won’t hurt at all. When I talk about what we’re doing my mind starts taking me to that bad place inside that discourages me. The feeling that it’s never gonna happen no matter how slowly we go. I’m thankful that I’m feeling it and acknowledging it straight away, but it’s still scary for me. You see, in my mind, when I see myself I’m not trapped in this bed. I see myself rolling over and sitting up and walking. It’s almost like a dream, but that’s what I see in my mind, my heart. I’m going to keep dreaming and maybe one day it won’t just be a dream.

Have courage and be kind.

Multiple Sclerosis · Primary Progressive MS · Quotes · Ramblings

This is my unapologetic truth and fuck you Independence Blue Cross

I’m trying really hard to find my way back from my depression. But right now my demons are circling around me and they’re not letting go. When Jason told me that I am not covered under my insurance to get to my doctors appointments, I think that was the straw that broke this camels back. First they deny me the only thing that will save me, Acute rehabilitation, and now they’re literally keeping me from my doctors. How do people that are bedridden afford to get to the doctors? I cannot pay $400 to $500 every time I need to see my doctor. The following picture is something that I never really wanted to share but these are my legs. I cannot bend my ankles so my feet are what I call, ballerina feet. I cannot straighten my knees. And as you can tell my legs flop to the sides and I cannot turn them so that they sit properly. This is what six years of being trapped does to you when you have doctors that don’t help you and insurance companies that keep you from getting the care you need.

Let me explain how painful it is when my legs decide to tense up. My feet get even straighter and my toes start to curl and there’s nothing I can do to stop it because I cannot sit up to grab my leg or to rub the area that’s hurt. Because I can’t sit up on my own. As I’m talk texting this it’s hard to see because I haven’t been able to stop crying since I was told by Jason basically, fuck you bitch. I mean basically we’re not gonna help you get your legs back in order. Without rehab nothing is ever going to change for me. I’ve had people ask me how come I didn’t realize this was happening to me. I’m not a fucking doctor dickhead. It wasn’t just one thing that led to this. The following pictures happened soon after I became bedridden. The surgeries for my colostomy and urostomy fucked up. I’m still pissed off that they saved me because I was really hoping they just would’ve let me die when it went bad.



I had the surgery June 10, 2014. it took about four days I guess for a nurse to realize something was wrong so they opened me back up and I had to have a wound VAC to close the hole in my stomach. So for 11 months after the depression was completely and utterly consuming. Because of the problems they had with the colostomy they ended up giving me an ileostomy. That was probably the worst thing that could ever have been done to me. I told them that if they did not fix it when my first wound heals up, that I was leaving earth because there was no way I was going to live with an ileostomy. Now if I were able to move and do things I might not of felt so drastic about it but when you’re trapped and everyone else has to fix it for you, maybe you’d understand. 11 months after they redid the surgery, and it worked but that surgery also needed a smaller wound VAC and the depression again was fucking terrible! So let’s recap… I fell on October 10, 2013 (became bedridden) the following year June 2014, I had the surgery which I wish had killed me, then in 2015 I had the surgery to fix the fuck up. So for the next two years I thought I had to come to terms with having a colostomy and urostomy. Unless you’ve been there you have no fucking idea what it makes you feel like. I still to this day do not like to look at my stomach. You really have no idea how badly I wish I had died in that original surgery.  for the more graphic and full story you can check out my post here.

I know that some of this makes no sense at all because it still doesn’t make any sense to me. I now have no fucking idea how I’m supposed to get to my doctors. They canceled my bladder stone surgery until April 29. Of course I knew that was going to happen, but now I have no way to get to the pre-op appointments for the bloodwork, x-rays, urine samples, everything they need before surgery. I really believe that this is independence blue cross’ way of telling me fuck you bitch we don’t give a shit whether you live or die. Basically we’re not going to help you. We’re not gonna help you get the care you need, we’re not going to help you get to your doctors appointments, and even if you do get to your doctors appointments we’re not going to give you the care that your doctors want you to have. I know that was a huge run-on sentence, but I talk text so it’s as if you and I are sitting there talking with each other. 

I’m really trying to hold on here. I’m really trying to find my way back to the light, but my demons have their closet me right now and they are not letting up. Unfortunately for my demons they don’t realize that it’s when I’m pushed to my limit, when I am shoved headfirst into the ground, that I will rise again like a phoenix. It may take me a minute but I’ll get there and God or the universe or whatever you believe in, help anyone that has tried to keep me down. Because when I come back, I will come back with a vengeance.

 

Anger · FUCK · Multiple Sclerosis · Primary Progressive MS · Ramblings

MS Awareness Month day 22

There really are not enough. I’m in a pretty dark place right now I’ve never been afraid of not being able to get out of it. But my problems at this time start with MS and of course that disgusting corporation Independence Blue Cross. I am very angry right now… SOOO angry. They are literally killing me right now by not allowing me the medical necessity rehab and the ability to get to my doctors. How do you people that are bedridden get to their doctors. I know, they go broke trying to pay for it on their own, Because Independence Blue Cross won’t. I’ve barely able to wake up the past few days because the fatigue from the stress and the depression is taking over right now. Fuck Independence Blue Cross fuck, the people that work for them that deny life-saving care just a big fuck you! I really hope Karma finds every last one of you and does her thing. Because you truly deserve what’s coming to you. I’m sorry but to work for a corporation where consciously know that you will be denying people life-saving care, you already have something fucked up in your make up. Because I know I could never work in a place like that, so yes, you’re already fucked up in the head. So sorry if this hurt anyone’s feelings… bahahaha no I’m not! I only speak the truth.

I’m sorry it’s a little dark today, but I can barely keep my eyes open and when they do open the tears just stream down my face. I’m angry and I’m broken and no one gives a fuck.

But no matter how I feel always, have courage and be kind. 🖤