Lying in the dark.
Alone.
Always alone.
Music playing.
Tears falling.
Alone.

Lying in the dark.
Alone.
Always alone.
Music playing.
Tears falling.
Alone.

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.
Have courage and be kind

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…
Have courage and be kind!

I will find the strength to overcome what I’m going through. Slow and steady wins the race and that’s how I’m going to take it.
Have courage and be kind.
I’m definitely a work in progress with this one. I work very hard trying to find the ‘light’ in every situation. Some days are harder than others. Just keep swimming. #QuotesPro
Have courage and be kind
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
I honestly don’t know if I want to be found. Most days I don’t think I’m worthy enough of being found. Feeling lost is a horrible feeling.
 Have courage and be kind
When I first saw this picture sometime ago my eyes filled up with tears. I came across it again this morning. It had a different quote on it for multiple sclerosis but it was very grainy and looked terrible. 🤷🏻♀️ I did a Google search and the image popped up with the other quote and a blank picture. I felt the need to add my own quote to this powerful powerful image.
This picture sums up my life completely. we need a cure! I just hope one is found in my lifetime before it is too late for me.
Have courage and be kind
*** if anyone knows the creator of this amazing picture, please let me know. I’d like to give credit where credit is due.
I am living proof of this quote. #QuotesPro
Always remember, have courage and be kind.
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.