multiple sclerosis · ppms · Ramblings · RANDOM

Multiple Sclerosis Fact – my itsy-bitsy spiders

I call this issue my spiders. It feels like thousands of teeny tiny little spiders are running all across my body. But alas, there is nothing there. Although, one night, I found an ant on my arm. 🤔😂

Unfortunately there’s not much you can do for it. It’s just another issue we learn to ‘deal with‘ 😢  And that is why we are WARRIORS!! 🖤💪

Have courage and be kind!

#MSWarrior #TheBedriddenLife #MarchIsMSAwarenessMonth #NeverGiveUp #PPMS

anger · boredom · Darkness · Depression · Fear · hope · HORROR · lonliness · medical · multiple sclerosis · primary progressive MS · Ramblings · sadness

Procrastinate for 500 please

Lately I think I do a lot of this in regards to doctors appointments etc. My procrastination comes from the fear of the pain it will cause to go to said doctors appointments etc. Just taking a shower is painful AF. And it’s all about my hips due to the fact my legs have been frog legs for over five years now.  And my husband rolls me over on my side I can’t explain the pain in my hip joint area. And then the moment I am in my Hoyer lift and he starts to raise it up, as my hips turn in their joint to the proper sitting position all I can do is cry.  My left hand which I have problems with, already ends up in a claw like fist when the pain hits and I literally can’t speak or function. And therein lies the main reason I don’t want to get up anymore. I can no longer handle the pain. I don’t even want to go to my pain management doctor because as I stated above it hurts to get up and be a normal person sitting like a normal person. So what can I do? I try to move my legs as much as possible on my own which is sometimes futile. My family can’t do it they have lives of their own and my husband doesn’t have time to work with me every day.

Unfortunately like you see in the movies people that are ill have caregivers that come in and out of the home. It’s not like that in real life  unless you can afford it or the state provides it.  Neither of which will happen for me. We live paycheck to paycheck but supposedly we make too much to be allowed help. Go figure 🤷🏻‍♀️ I wish it were like the movies because then I would have a physical therapist helping me daily, someone to help with my meals, showers, and my well-being. But it’s not like the movies. Lately I’ve noticed people are talking about the celebrities that have been diagnosed with MS blah blah blah. I feel for them, I do, but I don’t believe they go through the same types of issues that many of us have. They can afford getting the help they need and all that comes with being a celebrity.  I completely feel for them because they’re stuck with this fucked up disease, but I guarantee having money makes  having chronic illness a bit easier. Or maybe it doesn’t. What do I know?!

I really don’t mean to sound so bitter, but I am a little bit. LOL I think this is all coming out right now because it’s a new year and I am very clearheaded and I am confused and afraid because I really don’t know where to begin or how to get myself better.

Fuck it… I’ll think about it tomorrow… Because tomorrow is another day.

Have courage and be kind

anger · Depression · FUCK · hope · multiple sclerosis · Pain · primary progressive MS

And they dropped the ball

When I fell November 10, 2013 it landed me completely in the bed. Now I would think doctors would know the issues that come with being trapped in the bed. Legs falling to the side for comfort which makes you end up with frog legs in essence. I didn’t know until this past February when I was in rehab that they actually have little shoes/boots for this. Why in the fuck didn’t my doctors get me these hundred dollar pair shoes. The pain I’m in is from my hips being tilted to the side for five years and these cheap little shoes could’ve stopped that from happening for me.

EZ  boot orthotic system 

I’m talking about this now because I’ve been trying to use the ones I got at rehab to slowly put my legs back in the proper position and it feels like it’s too late. Because my legs and my drop foot have been in that same position for so long it fights against the boots. So what happens is I get pressure sores on the sides of my feet. I’m so angry right now. I have no help I’m trying so hard to do it on my own but it’s fucking hard. My husband cannot do it all and if they had just gotten me these little shoes so many of my issues would not be happening.

❗️I’m talking about this because I just want others to know if you end up in your bed for any period of time invest in these hundred dollar pair of little shoe things so your legs stay in proper alignment. I wish someone had told me five years ago because I would not be in the position I’m in now. As I stated above it hurts so much right now to have them on that I don’t know if I’ll ever be able to get my legs back in position.

There’s a picture of Denzel because I just watched the movie the bone collector and noticed he had a pair of these shoe things on for the movie. 😜
I really need to get with the neurologists out here and tell them that they have dropped the ball on me for way too fucking long and it’s time they fucking help me. It’s too hard to drive long distance to another neurologist. But I’m telling you if they don’t start doing their job to help me I’ll take the long drive.

This last picture are my boots and I’m still not able to twist the hip or put the kickstand up. My feet are getting used to being in a normal position and it fucking hurts. They normally point and fall out. I really hope this works. I know it’s gonna take A long time.  My doctors dropped ball… And in my depression I let them. 😪

I am sorry for the book. 🤓
I’m pretty sure that I repeated myself a lot and I’m really sorry tonight is a bad MS night. But I’m still Kickin and my wheels are turning because something good has to happen! It has to. ♥️👊

Have courage and be kind

 

Christmas · Depression · Fear · FUCK · FUNNY · Holiday · hope · lonliness · mindless-thoughts · multiple sclerosis · primary progressive MS · Ramblings · RANDOM · sarcasm · silly

All I hear is blah blah blah… I’m a dirty tramp

I can’t help it, I love that movie and that part of the movie. One of my favorite movie lines! #MrDeeds

My blog title has nothing to do with how I’m feeling though. Living with so much uncertainty in life sucks!  I’m always waiting for that other proverbial  shoe to drop.  I ask myself every day why do I even bother getting up in the morning err waking up because I don’t really get up at all. 🤔

Most people have something to look forward to they can make future plans. I don’t have that option. I have no way to a slow or stop my progression of my MS so I really do wonder why I bother.  But, I will wake up every morning and lie this bed and figure out a way to get through each day lying in this bed. I think I need to invest in a good mattress LMAO but that won’t happen until pigs fly out of my ass. 😂🤣 Good mattresses are too fucking expensive. What a rip off.

That is all for now… I know you’re happy about that. Remember, have courage and be kind!

Circa: a long time ago in a far off land…
Christmas · confession · Craziness · Darkness · Depression · falling · Fear · FUCK · health · HELL · Holiday · lonliness · medical · mindless-thoughts · multiple sclerosis · Pain · primary progressive MS · Ramblings · RANDOM · sadness · Wheelchair

I’m sorry, but there’s nothing for you…

What do you do when there is nothing for your type of illness? Yes there is a medication now for primary progressive, Ocrevus, but is it really for us. Most of the studies I see have been done on people with relapsing remitting or secondary progressive. They already had medications. LOL what do you do when there’s nothing for you? It’s too dangerous for me to take any of the DMD medications. So how do you live your life knowing nothing, and let’s face it, no one can help you. How do you fight when there are no tools to help you fight? The only way to slow or stop the progression of multiple sclerosis, any type, is to be on one of the disease modifying drugs. So, please, tell me how do I fight? There are people out there that won’t take those medications because they feel the side effects are too dangerous. I would give my right arm to be on one because I can tell you MS will fuck you up a lot more than any of the side effects from the medications. MS is always working in the background and I don’t care how great your diet is or that you exercise 24 hours a day, 😂 that will not slow or stop the progression of multiple sclerosis! So if you are not on one of those medications, I’m so sorry, but you are a special kind of stupid!

I really don’t mean to sound like a bitch, but I have nothing to help me and it angers me. How do you go on with your life knowing that you  can do absolutely nothing to help yourself. Yes I can watch what I eat and shimmey in my bed to keep movement going but that’s not slowing or stopping my progression. I am so fucking angry. I hate the fucking holidays because I cannot physically do anything for anybody not even myself. I don’t know if people really grasp the concept of being bedridden. Someone told me they were bedridden but that they could get in their wheelchair and cruise around whenever they needed to, that they could still transfer and things on their own. 🤯 UMMM  then you’re not fucking bedridden if you can get up all by yourself and get in n out of your wheelchair on your own.  What the actual fuck! I’m so glad I wasn’t near that person because I would’ve seriously opened up a can of whoop ass on them. LMAO when you’re bedridden you can’t get up out of your bed whenever you feel like it. Then you wouldn’t be bedridden! DUH I cannot even sit up on my own. I can’t even roll over on my own. I am stuck lying on my back for however long I stay in this universe. It’s a whole production getting me dressed and out of my bed and that is probably why I don’t do it very often. And it’s very painful… so there you have it.

Yes I’m angry!!

And every now and then you hear of a new celebrity just diagnosed with multiple sclerosis and they make it sound like they are some sort of martyr. For any chronic illness money talks. Granted it sucks that they are also struggling with this illness but they are able to get the resources that the majority of us sorely need but cannot afford.  I would love to have someone at my home helping me every day. Then I could get out of my bed and I could maybe maybe one day get better. I don’t mean get rid of the MS but physically get stronger and mentally having someone to help me could change my life. But unfortunately the majority of us cannot afford Caregivers nor can we afford to handicap accessorize our homes.  So while I feel sad for the celebrity, I would trade places with them in a heartbeat. I don’t even know where I’m going with this blog today. I can just feel that I’m not in a good place so I just needed to get shit out. As always I’ll be OK but sometimes I wonder how I’m going to be OK.

Have courage… And be kind

Darkness · Depression · falling · Fear · FUCK · FUNNY · health · HELL · mindless-thoughts · multiple sclerosis · primary progressive MS · Ramblings · RANDOM · strength

It’s not just MS!!

If anyone ever tells you, be glad it’s just MS!!  Punch them square in the jaw, to hopefully have the end result be that teeth fall out. Then they will remember never to say that to anyone ever again.

I’m really trying to stay positive, but when every day is the same with change nowhere in sight, it can be hard.

I’ll get over this feeling in a little while and I will get back to my positive outlook. But today I’m allowed to  feel this way and be angry.

And no, I’m not glad it was just multiple sclerosis. So next time think before you fucking speak. This is not going out to any one person in general, it’s just something I see all over the Internet when people are ignorant. So now I am going to watch Fast Times at Ridgemont high, laugh at how stupid it is and funny, and find my positive place again.

Have courage and be kind!

 

Craziness · Darkness · Depression · Fear · hope · multiple sclerosis · Pain · primary progressive MS · Ramblings · RANDOM · Wheelchair

It’s been a while…

I know it’s been a while. A lot of crazy shit has gone on. A lot of good but then some bad as well. 😳 Welcome to my world. 😈mwahahaha

So when I went to my doctor he thinks there may be an issue in my lower back. There is a possible fracture so he is wanting an MRI to see if there’s issues with my bones etc. I forgot to get the order on Friday so they are faxing it to my husband‘s work. My issue is no one is set up properly to give me an MRI. I need a Hoyer lift and unfortunately the ones they have at the hospital do not work very well with my sling. So I may have to bring my lift. And because of the metal they will have to find a way to get me on a gurney to bring me into the MRI to get me on the table. The last time I did the x-rays it was completely horrible. The pain was off the charts and that’s actually when they found my fracture at L1. 😳 So I’m not looking forward to the MRI. I’m actually scared to death. I’m really tired of all of us. I don’t usually break down but this is fucking awful.
If my back literally just keeps getting fractures I’m fucking done. I am so fucking tired. I had a blast the past few weeks and I really thought things were getting better and then, Bam this happens. I’ve been working so fucking hard to get out of this bad that I’ve been trapped in for five years and it just seems like the universe is against me. 😢

‼️‼️OKAY… I got it out and now I’m going to pull up my big girl panties and say to hell with all of this I’m going to kick some ass and find out what the fucks going on. I’m not sure if the universe knows who they’re dealing with… they must not know who I am. 😉
Sending out all kinds of love and hugs! ♥️😘 — feeling a bit overwhelmed and a bit pissed off… So watch out universe.

As always, have courage and be kind! 🖤