Multiple Sclerosis · Primary Progressive MS · Ramblings

MS Awareness Month day 31

Today is the last day of MS awareness month. Please keep doing your part to spread awareness. For those of us with the disease & our families, it’s all year long.

#MSAwareness #MarchIsMSAwarenessMonth #MultipleSclerosis 

Have courage and be kind. 

Multiple Sclerosis · Primary Progressive MS · Ramblings · Silly

MS Awareness Month day 30

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

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.

Fear · Health · Hope · Medical · Multiple Sclerosis · PAIN · Primary Progressive MS · Quotes · Ramblings · Strength

Straightening my crown yet again…

So we’re going to try getting me up in my shower chair. I figure since Independence Blue Cross isn’t going to help me in any way, I’m going to have to do it my damn self. Since the husband has to stay at home right now, I guess it’s the best time to start trying. I won’t lie, I am really scared because I know it’s gonna hurt like a motherfucker. So I’m going to “medicate” 🌿and try to psych myself up for this. It just really sucks that I have to psych myself up to take a shower. I know that some of you reading this completely understand, and I’m so sorry.

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I hope that all the movement I’ve been doing on my own will help. I just have to remind myself not to get discouraged if it doesn’t work today. If I keep trying maybe at some point it will work. The worst part about that comment is I’ve been trying on my own for quite some time now and it hasn’t worked. But, maybe, one of these times it will. Oh my gosh I am really nervous about this.

Also, real quick, thank you to all that have stuck by me and supported me even when I go a little mad. 😉 Seriously, thank you 🙏🏻🖤

Have courage and be kind.

Multiple Sclerosis · Primary Progressive MS · Quotes · Ramblings

This is my unapologetic truth and fuck you Independence Blue Cross

I’m trying really hard to find my way back from my depression. But right now my demons are circling around me and they’re not letting go. When Jason told me that I am not covered under my insurance to get to my doctors appointments, I think that was the straw that broke this camels back. First they deny me the only thing that will save me, Acute rehabilitation, and now they’re literally keeping me from my doctors. How do people that are bedridden afford to get to the doctors? I cannot pay $400 to $500 every time I need to see my doctor. The following picture is something that I never really wanted to share but these are my legs. I cannot bend my ankles so my feet are what I call, ballerina feet. I cannot straighten my knees. And as you can tell my legs flop to the sides and I cannot turn them so that they sit properly. This is what six years of being trapped does to you when you have doctors that don’t help you and insurance companies that keep you from getting the care you need.

Let me explain how painful it is when my legs decide to tense up. My feet get even straighter and my toes start to curl and there’s nothing I can do to stop it because I cannot sit up to grab my leg or to rub the area that’s hurt. Because I can’t sit up on my own. As I’m talk texting this it’s hard to see because I haven’t been able to stop crying since I was told by Jason basically, fuck you bitch. I mean basically we’re not gonna help you get your legs back in order. Without rehab nothing is ever going to change for me. I’ve had people ask me how come I didn’t realize this was happening to me. I’m not a fucking doctor dickhead. It wasn’t just one thing that led to this. The following pictures happened soon after I became bedridden. The surgeries for my colostomy and urostomy fucked up. I’m still pissed off that they saved me because I was really hoping they just would’ve let me die when it went bad.



I had the surgery June 10, 2014. it took about four days I guess for a nurse to realize something was wrong so they opened me back up and I had to have a wound VAC to close the hole in my stomach. So for 11 months after the depression was completely and utterly consuming. Because of the problems they had with the colostomy they ended up giving me an ileostomy. That was probably the worst thing that could ever have been done to me. I told them that if they did not fix it when my first wound heals up, that I was leaving earth because there was no way I was going to live with an ileostomy. Now if I were able to move and do things I might not of felt so drastic about it but when you’re trapped and everyone else has to fix it for you, maybe you’d understand. 11 months after they redid the surgery, and it worked but that surgery also needed a smaller wound VAC and the depression again was fucking terrible! So let’s recap… I fell on October 10, 2013 (became bedridden) the following year June 2014, I had the surgery which I wish had killed me, then in 2015 I had the surgery to fix the fuck up. So for the next two years I thought I had to come to terms with having a colostomy and urostomy. Unless you’ve been there you have no fucking idea what it makes you feel like. I still to this day do not like to look at my stomach. You really have no idea how badly I wish I had died in that original surgery.  for the more graphic and full story you can check out my post here.

I know that some of this makes no sense at all because it still doesn’t make any sense to me. I now have no fucking idea how I’m supposed to get to my doctors. They canceled my bladder stone surgery until April 29. Of course I knew that was going to happen, but now I have no way to get to the pre-op appointments for the bloodwork, x-rays, urine samples, everything they need before surgery. I really believe that this is independence blue cross’ way of telling me fuck you bitch we don’t give a shit whether you live or die. Basically we’re not going to help you. We’re not gonna help you get the care you need, we’re not going to help you get to your doctors appointments, and even if you do get to your doctors appointments we’re not going to give you the care that your doctors want you to have. I know that was a huge run-on sentence, but I talk text so it’s as if you and I are sitting there talking with each other. 

I’m really trying to hold on here. I’m really trying to find my way back to the light, but my demons have their closet me right now and they are not letting up. Unfortunately for my demons they don’t realize that it’s when I’m pushed to my limit, when I am shoved headfirst into the ground, that I will rise again like a phoenix. It may take me a minute but I’ll get there and God or the universe or whatever you believe in, help anyone that has tried to keep me down. Because when I come back, I will come back with a vengeance.