Fear · HELL · Multiple Sclerosis · Primary Progressive MS · Ramblings

MS Awareness Month day 21

I’m finding myself in the rabbit hole that is depression. Many of us struggle with this on a daily basis. No matter how strong we are, no matter how brave we try to be, depression can punch us in the stomach like a wrecking ball.

Hope has become paralyzing…

Have courage and be kind.

Anger · Fear · Health · HELL · Medical · Multiple Sclerosis · PAIN · Primary Progressive MS · Ramblings · Strength

My soul is tired but my will is strong…

Yesterday was an eye-opening experience for me being out of bed really for the first time since August 18, 2019. I am in so much pain today and sleep did not come easily last night. I now understand fully and completely that in-home therapy is not gonna help me at all. I need to be in a place where they re-train my body to move again and help me deal with the pain in my hips. It’s going to be a process and it has to be hard-core. I was up all night thinking about the night I fell on October 10, 2013 and how everything led up to where I am now. I need neurological physical therapy in a facility, NOT at home. I’m going to need the proper medications for the pain and I need to learn how to move again. When I say I’m like a newborn baby, I’m not being sarcastic. I know it’s hard to believe. 😊 I am now going to make an appointment with the neurologist so he gets on board with my pain management doctor about hard-core rehab. The ambulance service comes early Friday morning to take me to my pain management doctors appointment. I’m scared to death. I was only in my chair for a couple of hours and the edema was so bad yesterday it really freaked me out. I’ve never had it that bad. I know that I’m going to be in a lying down position, but that’s how my legs were yesterday I think it was more about the upper half of my body. I don’t even know how to explain it. What I have realized is if something doesn’t happen quickly I’m seriously screwed. I don’t think it’ll ever come back. I don’t think I’ll ever be able to move right again unless something happens now. They’re hoping that I am too ill and too tired to fight. We all know it’s about money not about anybody’s health or well-being. I am tired. I am fed up. I am so close to breaking. But unfortunately for them, that’s when my strength shows up! This IS life or death for me. That’s not an overstatement! If something doesn’t change quickly I will not be here much longer. My body is breaking more and more every minute I’m trapped in this bed. Somethings got to give!! I know I know this is really in your face. But I will never back down from this because it is my life! I’ll say that again, this is my life! so now it’s time to get all my ducks in their proverbial row, get to all my doctors appointments via stretcher, and bring it! I’m seriously tired just thinking about it. Please universe give me strength!

Wait till they get a load of me! 😈

Have courage and be kind.

Craziness · FUCK · Health · HELL · Primary Progressive MS · Quotes · Ramblings · Strength

It’s the boredom that kills you

As I am lying here trying to find something on TV, everything just hit me at once. My emotions went all over the place. Silently screaming and crying so no one in my house hears me. How long can one lie in the same spot every day? How many books can one person read? How much TV can one person watch? After a while each thing you do becomes boring. You lie the same way at all times as you can no longer roll your body to either side. I’ve actually had people tell me how lucky I am to be able to just lie around all day and have no big responsibilities. Really? 🤔 Maybe for one day or possibly even a week, but 6 years 3 months and counting… You must be fucking ridiculous! Mental torture is 100% accurate! When people tell me they can’t imagine, they have no idea what they would do, they could never cope, etc. They are 100% correct. They can’t imagine the darkness that goes through my mind every day. They have no idea how many nights I pray to whatever entity is out there to take me home. They couldn’t cope with realizing that death would be a beautiful freedom.

Sometimes I wonder which is more crazy, the thoughts that go through my mind or the fact that I stick around for them. My favorite ‘people’ are those that say, “No you’re not going crazy you’re just upset with your situation.” Oh how lovely that would be if it were that simple. I would love just to be ‘upset’ with my situation. That would be much easier to take. 

Have courage and be kind.

*** just a little FYI, I’m just venting and I hate having to add that but some people, the people that don’t know me, take some things I write in the wrong way. 🙄 If I didn’t get my feelings out, then I’d be worried. Thanks everyone… 



FUCK · HELL · Medical · Multiple Sclerosis · Primary Progressive MS

Broken

I am really in the thick of it right now. I have not heard back from Independence Blue Cross, so I’m in limbo. Most likely I’ll have to call Accolade who is the go-between. We pay so much money for health insurance every year, yet we are not ‘allowed’ to speak to the actual insurance company reps!! 🤔 It is absolutely ridiculous. Independence Blue Cross is 💯% withholding care from me. How can that be acceptable? Independence Blue Cross is really a joke. The incompetence over there is astounding.

I’m tired… But I’m not going to stop… I’m broken… But I’m not going to stop…

Have courage and be kind! < The people at Independence Blue Cross should really take heed of that simple sentence. I really do wonder how they sleep at night. 

Anger · FUCK · Health · HELL · Multiple Sclerosis · PAIN · Primary Progressive MS · Quotes · Ramblings · Sadness

Weird Wednesday

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

Health · HELL · Medical · Multiple Sclerosis · PAIN · Primary Progressive MS · Quotes · Ramblings · Sarcasm · Strength

Thursday Feelings – I am a Warrior

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

FUCK · Health · HELL · Hope · Primary Progressive MS · Quotes · Ramblings · RANDOM

Bravery…

I downloaded a couple of apps for motivational quotes etc. This one popped up today and it instantly sent streams of water down my cheeks. I am brave. I go to bed at night knowing that tomorrow nothing is going to have changed for me. That’s not being pessimistic, it’s being realistic. I go to bed at night, many times, asking whatever entity is out there to please take me home… Wherever that may be. I go to bed at night knowing that there really is nothing of quality there for me when I wake up. And to me, that is bravery. The picture above is one of my most favorites. I never before thought of myself as being brave. I never before thought of myself as being strong. I have always second-guessed everything I have ever done throughout my life. I have never felt good enough for anything or anyone. My only New Year’s resolution (which is pretty new to me as I never make them because I never follow them 😂) is to be unapologetically me. I am no longer going to hide away my feelings of my past, my present, or what my future may hold.

This is definitely going to be a new ride for my blog, a new adventure if you will. I’m scared every night before I go to bed. I’m always scared…

As always, have courage and be kind!