Tag: Multiple Sclerosis

Fear · HELL · Loss · Multiple Sclerosis · PAIN · Primary Progressive MS · Quotes · Ramblings · Sadness · Strength

Hope can be paralyzing…

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My favorite quote was once:

When do we finally say enough?

I’ve been trying for six years to get out of this bed. I thought I had a chance in 2018 and as you’ve heard, Independence Blue Cross took that away from me. I have to let go of hope because it has broken me. It has, paralyzed me. I was taken right up to the edge of hope and slowly watched it all fade away time and time again. How much longer do I lie in this bed? How many more nights do I cry because of the pain in my legs? It’s a torment I can’t break away from. It’s a nightmare that I can’t awaken from. I just really want to get off this ride because I don’t really like it anymore.

Then I see these quotes ^^ and think, I get it but for some of us our present situation is our whole life. There is no best yet to come without help, and I can’t get that help. I get it, I have breath, but breath is not life. It’s an existence that I’m tired of living. I am a literal, head in a bed. I’m tired, I’m tired, I’m so so very tired…

Have courage and be kind.

Anger · Craziness · Medical · Multiple Sclerosis · Primary Progressive MS · Strength

My doctor transport saga continues…

Tracy1 Comment

So… the only way I can get to my doctors is by gurney transport. I got the name of the people I used from the representative at Independence Blue Cross. I sent him the receipts explaining that it should be done at in-network rate blah blah blah. I received my explanation of benefits and it looks like procedure codes are missing etc. Seriously! 🤦🏻‍♀️ according to this they’ll only pay $100?! I don’t think so! I got the names of this service from the person that works in the executive offices at Independence Blue Cross. Then after I took these trips I was told that they don’t even cover these trips at all. WTF!! 😳 I’m dying over here at the incompetence of the people that work at Independence Blue Cross!



Oh my gosh and I almost forgot… so during this time I guess they will allow me FaceTime/phone appointments with my doctors. Although we’re not actually sure yet until they call my insurance company. So, if you’ll allow this now, why the fuck can’t I do FaceTime/phone appointments with my doctors all the time! I have a need for this, I am bedridden! I am unable to get out of my bed because Independence Blue Cross took me out of rehab much too early and fucked my life. And as we know they’re denying me rehab and have been denying me rehab since August of last year. I’ll be finding out in the next few days if in fact they will approve or deny my FaceTime/phone appointment set for next week. Independence Blue Cross, you damn well better allow me these over the phone appointments now and for as long as I will need them! 

So I’m going to be calling all of my doctors and getting over the phone appointments right now. I will also be getting my doctors together to get rehab going again! And NO Independence Blue Cross, my rehab won’t be done in the nursing home it will be done where I need it to be done, in an acute rehab facility! Are you so daft that you don’t understand I’ve been bedridden for over six years I need real help, not 10 to 20 minutes every couple of days!  Your doctors that work and get paid for by your company are incompetent buffoons if they don’t understand this. Money over human life! You’re all disgusting!

Have courage and be kind.



Fear · Health · Medical · Multiple Sclerosis · Primary Progressive MS · Ramblings

Am I alive or do I just exist?!

Tracy3 Comments

Remember these from July 2019. My wonderful bladder stones thanks to my wonderful urostomy. So I was supposed to get this taken care of back in August 2019. Didn’t happen because that’s when I had to go to the hospital because I thought I broke in my hips and my back when I was trying to get in to rehab. Thanks to Independence Blue Cross not allowing me rehab I was unable to get out of my bed so we kept rescheduling. Now with the virus I was rescheduled twice, and today they called to tell me it had to be pushed back to May 26. But it’s really only a tentative date because it may change again. So basically I’m filling up with so much bacteria and that’s probably why I feel a little clammy and not well at times. I try to do everything right but nothing ever goes right. Possibly because I am left-handed. 😂😂 I’m joking… Or am I. 🤔

I am trying to find the humor in all of this because that’s the only way I survive. But man, it’s getting harder and harder to laugh. I know I know, I should be glad because I’m alive. Am I alive or do I just exist. You’ll be the judge. 🤷🏻‍♀️😕

Twins

There’s an alien in my bladder

I’m wondering how many more are in there now. 😳

Have courage and be kind.

Medical · Multiple Sclerosis · Politics · Primary Progressive MS · Ramblings

Independence Blue Cross, I haven’t forgotten…

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With everything going on right now I think they feel like I might’ve forgotten all about them… But nope!! If anything I’m thinking about it more. I’m still waiting to find out if they’re going to pay for the medical transport that they told me I was covered for. But wait a minute, then they told me I’m not covered for it. 🤔 I just hope they understand that they better get my money back to me at the “In”network rate. I’m still waiting for my check. The last I was told is he was going to check into it for me on march 20th. Now all I’m getting are crickets. I get it you’re probably denying a bunch of people for coronavirus testing and respiratory help. Seriously, you know you are! Just get on it, and give me back my fucking money! And be prepared, because at some point you will be giving me my rehab! I have not forgotten. 😏

Sharing this picture again so that more people start to really understand what’s happening in our country with our healthcare system.

Please everyone, stay indoors and be safe! 🖤

Have courage and be kind. 

Multiple Sclerosis · Primary Progressive MS · Ramblings · Silly

MS Awareness Month day 30

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The month is winding down and as we all know it’s been a crazy one. With Covid-19 floating around we all have to be a little extra careful thanks to our wonderful autoimmune disorder. Especially those of you on a DMD, please take extra precautions. My heart, hope, and love is with you all!

And with everything going on, I think we need a little humor from time to time.



Have courage and be kind.

Multiple Sclerosis · Primary Progressive MS · Quotes · Ramblings · Strength

MS Awareness Month day 29

Tracy2 Comments

I know that living in the past or thinking about the past is something that we should not resign ourselves to do, but I really do miss who I was before. I was someone who loved working. Grocery shopping, in my book, was one of the best things to do. I know, I’ve never said I wasn’t a little strange. But, laundry is what I really miss doing. And no, I’m totally serious about this. I think it’s all about the fresh smells, the warm clothes right out of the dryer, and even the act of folding things was fun for me. The weird thing is before I never thought about any of these things. I never realized why I did not mind doing these things. So I guess MS has taught me to look at things in a different light, a different perspective. Out of all these things I miss, driving is definitely the one that kicked me down the hardest. Driving was an escape, freedom, something I loved doing. When I lost that privilege, I was broken for quite some time. I could say that I will never drive again because at this point it’s probably true. Instead though, I can keep wishing and hoping that one day I may drive again. Yes, again I’m pretty sure I’ll never drive again, but it’s always so lovely to dream. 🖤

So as I wrote the above I kept thinking to myself, what I really miss is being able to do ‘anything’. We’ve been trying daily for a shower and it still has not worked. I did have a really good bed bath though, so I do get clean. 😇 We are starting slowly with my husband rolling me over on my side for 20 minutes to a half hour. It really fucking hurts, but each time it seems to be getting a little easier so maybe one day it won’t hurt at all. When I talk about what we’re doing my mind starts taking me to that bad place inside that discourages me. The feeling that it’s never gonna happen no matter how slowly we go. I’m thankful that I’m feeling it and acknowledging it straight away, but it’s still scary for me. You see, in my mind, when I see myself I’m not trapped in this bed. I see myself rolling over and sitting up and walking. It’s almost like a dream, but that’s what I see in my mind, my heart. I’m going to keep dreaming and maybe one day it won’t just be a dream.

Have courage and be kind.