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.
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…
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
I’m kind of excited I found a non-emergency transport so that I can get to my doctors. If I can work it out perfectly I can make my appointments for the same day. It’s nice that all my doctors are in the same building. It’s going to be so much easier going by stretcher then having to try to sit for any period of time in my wheelchair.￼￼￼ I can’t even get my wheelchair so I think this is going to be good.￼ I think I’ll buy a crown for that day and as they’re pushing me through, I’ll put my hand up and do the wave. 😂
I’m going to talk to my doctor about contracture surgery as well as rehab. Maybe that’s the route to go. I’ve been trying to find the perfect in-home PT group from the names the Blue Cross rep gave me, but that’s not helping. All they tell me is, “Our rehab people are good.” I’m sure they are. I’m asking if they deal with muscle contractures. Frankly I don’t think any of them know what that is. 🤔 I just want to know how in-home therapy is going to be able to help me with the pain. They don’t. I need to be in a facility if I want any pain help. So I guess I’m just going to grit my teeth. 😁 I can tell that this is going to be a lot of fun…
Now I need to get my appointments, get the certification from the insurance company, and get a time slot for the transport. Oh how I love jumping through all these hoops just to go to my doctor. Oh well, we do what we Gotta do.￼￼￼ 😏
Time to straighten my crown and get shit done. 🖤￼Have courage and be kind￼