Anger · Darkness · Fear · Multiple Sclerosis · Primary Progressive MS · Quotes · Ramblings · sadness · Sleep · Strength

Depression and Fear are Paralyzing

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.

Anger · Darkness · Fear · RANDOM

If I squeeze my eyes shut and open them again, will I finally wake up from this nightmare?

Saw this on FB and it is how I feel most days. In my dreams I am able bodied and walking friendly. Then, I wake up. This past Friday showed me how crippled I am really am. I HATE my wheelchair but realized it is my life now. On Friday I was getting the laundry ready, turned on my WC, and nothing but blinking lights. I kept turning it off and on like a mad woman, and the same thing happened over and over again. I was completely screwed! Stuck in my room with no way to move. As the tears slowly slid down my face I looked up at whatever higher power is up there and quietly asked, WHY!? At that moment I realized how dependent I am on my WC and it is my only independence, if you can call it that. Then the anger hit and the quiet why turned to an angry why. I had no way to move myself and get from where I was. My son was in his room with his ear buds in and could not hear me cry for help. My girls were not home from school registration yet and I had no phone to call anyone. After 10 minutes or so the girls got home and unlocked my wheels so they could roll me out of where I had been trapped. This is my life, my nightmare!

fear...

So I ask… If I squeeze my eyes shut and open them again, will I finally wake up from this nightmare?

I think not…

Multiple Sclerosis · Ramblings · RANDOM · Silly

This-n-That and Ampyra

Will start with the Ampyra saga.  I’ve been on it now for 3 months. Do I notice any improvement? I want to say, “YES YES I do”, but it’s not that simple. I do feel that transferring and rising up and down has seemed easier, sometimes. But, then I wonder, was it the same before the Ampyra? I’m sorry but most [99%] of the MS medications are for RRMS and not the progressive forms. They say this is for all types, but I do not buy it. You would think they would WANT to find something for the more serious forms as then the less serious form might be ‘cured’.

Well, it’s kind of a mute point now anyways as a clusterfuck occurred between the insurance and the neuro’s nurse and the neuro. Due to the type of drug this is they [ins] wanted to know the progress after 3 months before refilling my scrip. You would think that would be easy peasy… ummmm nope!! My neuro’s nurse [new] is one not the brightest stars in the sky when it comes to dealing with this. I think she mis-informed my doctor and he canceled the scrip.

can't anything be easy?

She told me to call back Friday night after she spoke with my doctor. Fuck that… she can wait until Monday and this time she better have the right answers. I’m still waiting for a referral from 2 weeks ago she has not done. I’m a pretty patient person [hence my bathroom] but DO NOT push me too far. You will not like it. So we shall see what happens tomorrow.

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I am finally back to doing my jewelry, MzTracyr Designs . I hope the good feelings last as they can go away as quickly as they come. It was really cool being at my design table creating again. It’s been like 3 or 4 months [maybe longer] since I have made anything. Drop on in and take a look if you can.

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Now on to a funny/not funny situation. My wheel-chariot does not seem to want to hold a charge. So, Roger took it apart and tested the batteries the cables and all are fine. I’m wondering if the controller’s wire is messed up since I do run into walls from time to time. lol I’ll be calling them tomorrow. Oh JOY! Now the funny, omg, duh moment… I’m 6′ tall and wheel-chariots are not made for tall people. This one seemed the best so we got it. Well, when Roger took it apart we found that we can raise the seat almost 6 inches! We were busting up laughing and how stoopid we are. I have had the chair since February 2009 and we had no clue. We are not big ‘manual’ readers. lol It is so cool to be higher. I was in heaven today. He raised it so the back is a tad lower than the front and it is amazing. So, now I got the best chair, and it may be having issues. This is so my life!!

Welcome to my world!!

 

xx, Tracy...

 

Darkness · Dreams · Fear · HELL · Multiple Sclerosis · Ramblings · Sleep

In Dreams – Hell Hospital

Due to my Hellish Hospital stay, I think this dream says it all. I have been having it more than I would like to.

She slowly wheels her chair down the corridor, doors pass, she can hear the laughter, she follows the sound. It is getting louder, the laughter, the muffled voices, she is getting closer, she is at the door. People in scrubs all around, faces lost, standing around the bed, someone is in the bed. She is crying through the sounds of laughter. Her face is cloudy, her face is coming clear. She is no longer in the wheelchair, she is in the bed, crying. Please someone help me…

©February 6, 2010

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Blessings and Hope!