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

Celebration · family · fun · Halloween · Happiness · Holiday · hope · Ramblings · RANDOM · trick or treat · Wheelchair

HAPPY HALLOWEEN!!

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Have a fun and safe Evening! Keep your furbabies safe and away from opening doors.

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Last night was the pumpkin carving party at Don’s house. Here are the wonderful pumpkins that were carved. It was a fun time for all.

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I started out dressing like a Vampire, but the wig cap/wig gave me a headache. My fitted Vampire teeth were a pain in the mouth! lol

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So, ended up as a Witch. The lace on my hat is over 90 years old. It was my Nana’s. There is also a black rose with it. This is my favorite Witch hat. Yes, I have more than one. 😛

WITCHYME

Hat made in 2008. Still my fav!!
Hat made in 2008. Still my fav!!

My fabulous make-up was done by Steph. She made me look damn good for a 51 year old. lol

Even with the pain, I had so much fun! I have let fear, being self-conscious, and embarrassment from my illness stop me from doing so many things. I know there will be times when my condition will keep from doing certain things. It makes me sad to not be able to be ‘normal’. One thing is for sure; I am blessed with a support team that always has my back. They never give up on me, even when I give up on myself. I am one of the lucky ones!

A Happy Halloween to all!

Love and Light!

Celebration · Happiness · Holiday · RANDOM

Pumpkin contest anyone?

The past few years I haven’t done the Halloween thing. Bums me out as Halloween is a favorite day for me. I used to always dress up and hand out candy. Scaring kids was and added plus for me. 😛

Mwahahaha
Mwahahaha
Witchy Woman
Witchy Woman
I WILL bite you...
I WILL bite you…

Tomorrow is going to be so exciting for me. My former nurse and now my BFF Don is having a pumpkin carving contest party at his home. I’M GOING TO DRESS UP!! It’s been so long since getting out my Halloween gear; dress, wigs, jewelry, makeup, etc. Steph and her crew are going, as well as my family. I can’t wait to meet Don’s friends and make some new friends in the process. It’s the little things in life that make so happy. I won’t be doing any carving myself, as knives and me don’t go together very well.

So, YAY for me!! I’m finally getting out and doing things again. Taking baby steps, or rolls. lol

Peace out!

Love and Light

Wish I cold do this! Spooky
Wish I cold do this! Spooky