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 have suffered from every type of insomnia ￼at some point.￼ I don’t think I have slept more than three hours in over 23 years.￼ Since my “situation” this past week I’ve been on a high. I knew that was gonna happen and thankfully I’m recognizing it very quickly. Last night my husband and I watched, The Wrong Missy￼, on Netflix. It was awesome. At around 11:30 PM I tried to go to sleep and nothing happened. Then it was 1 AM and I started going on a low feeling like, oh my gosh is anything going to change. The next thing I know it is 9:50 AM. I can’t believe I got over eight hours of sleep. I feel amazing and I’m very afraid of that. I haven’t been happy in so many years that this feeling is very scary. This time, thankfully, if I do hit that low I will reach out to my amazing tribe. I am finally seeing that I’m not alone. 🖤 I wish I had noticed that before.
I love Snapchat filters. I rarely post my photo on my blog so here I am. 😜￼￼
I’m telling you today is already on my nerves. I got my bladder surgery scheduled and the pre-surgery doctors appointment. I did what I was told and called to get the pre-certification for the non-emergent transport, ￼￼and was told my doctor needs to call. Now a week and a half ago the Young lady at Accolade called with me on the phone and took care of this for me. ￼I think something must have happened because today no one will help me do it. Then, this weekend I received a new bill from my August 2019 stay and while getting my papers all together I found one I’d forgotten about￼. Previously I￼ was told that my responsibility would be $50.90, but￼ these bills together are￼ $3000 and some change.￼￼￼ I think someone’s messing with me. Am I on candid camera? Or maybe the TV show Punked came back. I know the wizard is behind the curtain. 😂
Trust me this morning I haven’t been strong. I’ve been crying a lot because it’s so overwhelming right now. This company (Independence Blue Cross) and their people are keeping proper care from me and making everything I need that much harder.￼￼ it’s been a big eye-opening experience for me. I used to think people were exaggerating when they said their health insurance wasn’t helping them etc. I mean how can your health insurance not help you when you pay for that service?! Right? It has been boldly thrown into my face that it’s all about the money and the greed of these corporations. They have the money to put me in a top-of-the-line acute neurological rehab, but they’re not going to do it because that would take away from their paychecks. I am tired, I am discouraged, I am broken, but I will not be defeated! If they’re doing this to me how many other people have they done this to? And how many of those people did not have the strength or even know what to do to get help. This is what these companies do. They prey on people like me and their rent-a-docs run our healthcare without even seeing us or meeting us.￼￼￼￼￼ ￼
So, while I have had a mental breakdown this morning and am feeling myself falling into the depths of healthcare insurance hell,￼ ￼I will not stop!￼￼ this is my life! And I really hate when my mind goes to that dark place and I pray for karma to hit each and every one of the people that are denying me the life-saving care. I don’t like being that person. I don’t want anyone to feel the depths of despair that I feel every morning I wake up and realize it’s another day trapped in this hell. I wish these people would come to my fucking home. All they would ￼have to do is take one look at my legs and they would see how much I need their help.￼￼ Oh shit, wait a minute… They DON’T FUCKING CARE!￼ Phew… that was a close one, I almost gave them credit for being human.
I’m trying, every single day I’m trying. I have my courage I just don’t see anything changing. But I will keep trying.￼
Stephanie was here today and she got me in my wheelchair for an hour or so. It’s going to have to go very slow right now since I haven’t really been out of my bed since August 18, 2019 thanks to Independence Blue Cross. Since being denied rehab my legs my back everything has gotten worse. So now I see it taking even longer because basic rehab in my own house isn’t gonna work. But obviously they don’t care because they’re not the ones that have to live it. Just a short period of time sitting in my wheelchair the edema was so bad in my feet I was mortified￼.￼￼￼ So, thank you Independence Blue Cross for denying me rehab you’re making it so easy on me. And please insert sarcasm wherever you’d like.￼￼
I know it got a little dark in here last night. Sometimes when I’m sitting by myself thoughts pop into my head. I decided I’m just going to put them here when that happens. Blogging to me is an outlet. It’s a way to purge myself so I don’t lose it in my real life. Does that make sense? Does it matter if it makes sense to you? I guess as long as it makes sense to me it’s a good thing.￼This is my love. She stays by my side and makes sure that I’m OK.￼ ￼She is the reason that two years ago, almost to the date, I did not leave this earth. She did have some help from my beautiful friend Carolyn.￼￼ That story is here and one that has no end yet. At least not the end that I was hoping for. Still a work in progress.
Today is a better day. Starbucks and blueberry muffins are the perfect thing to put you right. ￼I tell people all the time, that it’s just a bad day not a bad life. I sometimes need to take my own advice. Today, I will!￼￼Have courage and be kind.￼
Sadly people with chronic illness do this all the time. We do it because we know others don’t REALLY want to know how we REALLY feel. We know when you ask us, “How are you?“ That you don’t want us to get down to the nitty-gritty. The answer you want is the one we give, “I’m fine.”
Let’s face it that’s the easiest answer to give. I’ve literally watched peoples eyes glaze over when I do tell them how I REALLY feel. When that happens I usually just stop talking and ask them how they are. Trust me, they love to talk about how they are. And that’s OK. It’s human nature.
This seems like an easy concept but in reality it can be very hard. I was 53 years old when the positivity 💡turned on￼. I’m still a work in progress as negativity still pops up daily. I’m really trying to turn it around and find that positive. I’ll get there eventually. Things like this happen when we’re ready. I will be 56 in March, so better late than never. #MotivationApp