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.￼
We must keep going… I know that know. Although, it can be so hard to do. The home health nurse came over last week and now I’m waiting for the physical therapist to call for an appointment. We are not sure how many appointments I’m allowed through Independence Blue Cross. Sadly, it probably won’t be enough. Again, I’ve been in this bed for over six years. The damage done is much more intense than a few at home PT appointments. All about the money and giving their higher-ups bonuses at the end of the year. Meanwhile, I’m trapped in my bed thanks to, in part, Independence Blue Cross.￼￼￼ they kicked me out of inpatient acute physical therapy in 2018 too soon, and now they won’t give me any proper care. According to Independence Blue Cross doctors, it’s not needed. My family does as much as they can, but without real help… I really feel like I’m going to be stuck in this bed for a long time. ￼￼Unfortunately in the world we live in today, insurance companies run our healthcare. Profits over people. I’m still waiting for them to give me my money back for the transport services. With everything going on the world right now, we could really use that 900+ dollars back. Greed prevails… 😳￼￼
I’m trying really hard to keep going. I believe I will, but I just need help. My counseling appointment went really well last Thursday, and I will be talking to him again this Thursday. So that’s a plus.
I’m still feeling quite a bit lost but this time I am reaching out. It’s gonna be a long process but I have to keep going. ￼
Tomorrow at 9 AM I have my first Zoom counseling appointment. I was getting concerned because ComPsych kept calling and telling me they hadn’t been able to find someone. This morning that changed. I’m a little nervous but I think it’s going to be a very good thing for me.￼ We need to let people know that getting help is nothing to be ashamed of.￼
It truly is OK to ask for help! And please, if you or someone you know is in crisis, call the National Suicide Prevention Lifeline.
Will was one of those people that you just wanted to have as your friend. No matter how awful his multiple sclerosis was treating him, he smiled. He always had a smile for everyone and a motivational word or two. His passing left so many of us in tears. We were just becoming good friends when he went on his next adventure. When people say multiple sclerosis doesn’t kill you, they are wrong. If he did not suffer from MS he would not gotten the infection that landed him in a nursing home. ￼ He would not have become septic, and he sure as hell wouldn’t have ended up with ￼￼bedsores. He did die directly from his multiple sclerosis. ￼￼ I think the part that is hard for many of us is that while in the nursing home he suffered from bedsores. That is something that should not happen when you’re under 24/7 care.￼ 😢￼
The best thing about him is he always smile no matter how bad he was feeling. He always had a kind word for everyone that he met.￼ he definitely was “Wicked Smaht”!! The world lost an amazing person the day he died. What I loved about him the most is that he never had an unkind word to say about anyone. He was just always there when you needed him. Thank you so much Will for being you. You touched so many lives and we miss you so! You truly were an MS Warrior! ￼I know wherever you are you’re making everyone laugh and feel better. Love you! 😘
It’s been two weeks and one day since my suicide attempt. I’m still on that high but I have had a couple of lows. My husband helped talk me through them and I’m utilizing my tribe. I have the suicide hotline phone number ready to go on my phone, and Alexa will call them for me as well. People think it’s easy to just, get over things. For some it is, but for some of us it’s not. All we can do is live day by day. I am actually living minute by minute right now. I have been known to self deprecate and that is something I’m trying to stop. I am an awesome person, a great mom and wife, and a fierce friend. I am very proud of myself right now for holding it together when I’m ready to fall apart. I am really hoping for better days. I am hoping to get out of this bed at some point. I just have to let go of my past and who I was and learn to love the person I’m becoming. It’s a process and a pretty hard road, but I’m going to keep going forward.￼
I may have found someone to talk to. I’m awaiting a phone call. Now my husband’s company, Comcast, wants us to go through ComPsych for our mental health needs.￼ Anything has to be better than going through independence Blue Cross directly. I don’t mean to be so blunt, but IBX really is waiting for me to die.￼ 😳 I know, drama queen right?! What other reason could there be for them fighting life-saving rehab for me. Oh wait a minute, money! It’s just very sad to me that money is more important than human life. Again, and I know I’ve said it before, if they had allowed me another month in rehab, I wouldn’t be needing rehab anymore.￼ unfortunately, giving people bonuses at the end of the year was more important than my life.
Enough of them, things will be coming into place soon. 😏 Now, I am going to get some help. I was very proud of myself for actually making the call today. I’ve been looking at the paper they gave me at the hospital for mental health help. It was a complete and utter joke. Bottom line is my insurance won’t cover anything they gave me. I actually think this ComPsych, which is through insurance I think in a roundabout way, is going to be a good thing for me. Honestly it’s a good thing for anybody to have someone to talk to that’s completely impartial. I really hope this will be another positive and a new turning point for me.
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.
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.
I am ready for my appointment Mr. DeMille… I mean Dr. Nasser!￼ 😂 I feel really good right now. My neurologist did have to cancel our FaceTime appointment today due to their computers are down. Hopefully I will get another one this week once their computers come back up. At 1 PM I have my pain management doctor appointment. And now that I know this can be done via telephone, Independence Blue Cross will be paying for me to see my doctors this way. At least until I get out of my bed! 😏￼￼ YES, they will! ￼￼And yes, here’s another picture of me! LOL Feeling good today! ￼