MS takes a lot away from me but I want to let you know that I am still here.

It has only been six months since I have been diagnosed but it feels like forever. Life has been a frickin whirlwind for me and I live my life via a pocket day planner. I am constantly reading and researching everything I can regarding MS. Especially the medication that I have been prescribed (Aubagio).

I was on it before but I had to stop it because it reacted badly to the IV infusions. So now I have been on again for a month straight with no bad reaction. I didn’t have the hair loss, thank goodness. But I am not seeing any other wonderful things about it.

I wasn’t really hoping for miracles but I was kind of hoping for a little bit of difference in how I felt. But I still have the MS hug. I still have the difficulty walking. I still feel like I am in a flare all of the time. Out of seven days I have one decent day. The only thing is I don’t have to wear a diaper due to diarrhea blowouts and urinary accidents. That is a blessing.

I am blessed to have my husband by my side. He knows when I am having a hard time. He knows when I can’t get a breath. He knows when it is just a struggle for me to walk through the house. I can’t find the words to tell him because I can’t find the air. So I just lean my head on his shoulders and silently sob. I don’t have to say a thing, he just knows.

That happens a lot. My voice is taken away from me a lot. But he knows. He can read me. My eyes will tell you all you need to know. Sometimes my voice is slurred or it makes no sense at all. But he makes sense of it. We laugh at it but there is a lot of tears too, I won’t lie. I sob due to frustration, due to loss, due to pissed offness, due to achiness, hurt, loneliness and tiredness.

I am still here.!!!

I am still me!!!

I may be struggling but I am still here. I am learning how to live with this. Please don’t toss me aside. Don’t act like it doesn’t matter. Learn about it and ask me about it. But don’t ignore it. I wouldn’t do that to you. There’s no cure but I am not going to die from it.

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I wish I could fall asleep as fast as my feet do. I wish I could get as much sleep as my feet do!!

So I went through a stage of extreme bitterness yesterday. I know that with MS we experience mood swings and I hadn’t really paid much attention to it until yesterday. It was awful. I was angry, bitter, and resentful.

MS robs us of so much. It steals our independence and our sanity. I realized that I spend a lot of time looking out of the windows watching the world go by. I can no longer just go jump into one of my trucks and go somewhere. One truck is a definite no because it is way too high for me to get into even with a small ladder. I could never drag that ladder up into in order to get back out..

The other truck I might be able to get into but I wouldn’t be able to get back into once I got out of it.

I miss being able to just go places. I miss going to the little stores and finding treasures. My bestest friend and I would spend hours going to stores like Habitat for Humanity, Hospice, Salvation Army, Consignment Sales, Secondhand, and more.

My house is filled with a lot of treasures that I found. Sometimes we would have her truck filled with things that we found. Now I cannot go. I will get back there though. She still brings me things and I smile but it is not the same. I miss the treasure hunts.

We are planning on going to the time share here in the next few weeks and I am looking forward to it. However, my hubby and I usually walk the beach on one night. We find so many treasures when we do this. But this year I fear that I may not be able to accomplish this yearly tradition. My husband looks forward to this as do I, but I don’t have the muscle strength to make it through.

I may not be able to do much more than that but at least I will be at the beach. I can look at the beach and I can see my husband at the beach. I know that he is relaxing. For seven days we will be detached from the world. No work and no doctors.

I am so tired and I need to get a restart. I am exhausted and I have nothing left to give or say. My body is weak and just not wanting to do anything. I ache.

I know that I need to get a bunch of other tests done regarding my skull, hips, neck, and spine but I just need a break. I will get them taken care of when I get back. I just need a break. I’m tired.

I’m tired…….. Sometimes it’s exhausting to just exist.

My MS stands for More Sarcastic… And that is not good for those who are around me.. It is not safe for anyone who is outside of my bubble..

I was going to write about how I was feeling so robbed in regards to the relapses. I was going to say that I pissed about how I just had a great day only to have a devastating day. I was going to say how much I despised the flares because they were getting worse.

But why waste the time and energy? The shit is going to happen anyway whether I like it or not. MS is a mean little, ugly ass, troll who just needs to be eliminated with gasoline or bleach. Something.

I hate trolls and gnomes!! They both creep my out!!

There was this one time I lived in an area and someone was placing gnomes in peoples yards. Each morning the gnomes would be some place else. Sometimes you would see them in a field. I am tell you what!! If I woke up and found those creepy Lil bastards in my yard, they would have found them in a busted and shattered heap of plaster!!!

Now I would have no problem with the flamingos when they were doing those!!

I even cringe when the Travelocity gnome television ad comes on!!

Wow. I totally went off topic. I blame you. I don’t know why but I know it is just your fault for some reason. You know why. Don’t you?

Sometimes my own sarcastic attitude shocks me.. Not enough to change mind you, but enough to say Wow!! And of course laugh.. You have to laugh at yourself right? That’s what everyone is always telling you to do. Those are the times when I believe that I am critiquing my craft… :).. And then there are times when I have to say “wow you are truly a bitch!”

Now imagine this.

I used to be a customer service manager at Walmart. I would sometimes work the service desk. Yea me. The mantra was “my credit cards are in my car and my cell phone is my pocket, just call my husband, he will know what to do”

I am one that hates shopping and cannot be trusted to shop. I used to go and get a 25lb bag of dog food and put it on top of the shopping cart when I was shopping. I used it as a push guard. I had no patience for anyone. I went in with an attitude. I didn’t care if you were young or old.

My family were always on high alert and waiting for the call from the police department for them to come bail me out.

So they were shocked to hear that I was working in a store, let alone a frickin boss.!!! Who would be dealing with people all day long. And I had to be nice to them. That was a thing to do. There are a lot of miserable people out there. They look for anything to complain about and they especially love to find a good reason to get something for free.

You would be amazed at how many people thrive on getting their rocks off on getting others fired from their jobs. It’s like they wake up in the morning and set up a goal. They are not happy until they get someone crying. Evil sunofabiotches!!!

So I am onto their game. They complain about the littlest thing and scream that they want to speak to their manager. That is when I roll up. However, I roll up with my manager who happens to be my best friend (no one knows that we are best friends because we are not permitted to be best friends because it is against company policies.) (so we have to keep it on the down low)..

I ask the cashier what is the problem and of course the asshole customer immediately interrupts and has to tell me how incompetent my cashier is at her job. She tells me how many mistakes the cashier did and how rude she was. I was looking at my cashier and I knew that the customer was full of shit.

The customer went on and on to the point where I finally had to shut down the register and pull the customer off to the side because she was causing a scene. She wanted this and I was not going to give her any more attention than that. I said I have had issues with the cashier before and I think that I needed to train her more. Now mind you she has been there quite awhile. Oh and I am the one who trained her.

I told the cashier to go ahead and punch out and go home. This thrilled the customer but little did she know that it was time for the her to go home.. Lol. She asked me what was I going to do with the cashier and I said that I was probably going to have to terminate her. You should have seen her face light up!!!! The frickin psychocotic heifer!!! I offered her a $10.00 gift card for her trouble.

She was pleased with that and walked out. She makes this a game and does this all the time. She came in a month later and went through the same cashier’s register. Never had a problem with her and never even noticed that she wasn’t terminated. Go figure!!!

Gawd I hate people!!!

Don’t be offended by the way I deal with this, we all have our own ways of doing things. Mine just happen to be weird and funny.

I am far from conventional. I am far from normal. Hell I would be offended if I was normal. I love my country and I love my Lord. I love my parents and my children. I love my husband and my friends. I love what family I have left. But most of all, I love myself.

I don’t care what you think of me. I don’t lose sleep if someone doesn’t like me. In fact I will sit my fat ass right down beside someone who doesn’t like me just to be a bitch. I am not here to please anyone. But I will defend myself and whoever I love.

I love confrontation and I will not back down from a fight. Conflict doesn’t bother me. I thrive on chaos. I hate bullying and I don’t care how big a person is, I will stand up to them.

I have been through anger management and had to pay restitution because I got back at someone. I would do it again. I wouldn’t change a thing.

I have a 4×4 truck and she is my baby. I bought her brand new. I had the word “BITCHIN” put across the top of windshield in bold white letters. The letters were 4″x4″.. My truck was black so it really set it off. My truck was high up too.

I was at a store one day and I seen a little boy read the word. His mom stormed up to me and told me that I should be ashamed of myself for what I had on my windshield. I asked her why? She proceeded to tell me that her boy had said that word. I told her that she should thank me because I just taught her boy to read!!!

I had an old lady tell me that I was going to hell and I said I had already been there and was kicked out for bad behavior.

So that is me….

That explains why I will not accept MS quietly and I don’t expect my husband to either. My husband calls me his “Gimpy Tard” and I am so okay with that. I think that we also need score cards for when I fall. I want to be rated on presentation, landing and creativity.

We can laugh when I get stuck on words and so many other things as well. We already have humor in our relationship and we will keep it. I requested it. I will never be offended by anything he says because I will have already had said it. If I can’t laugh at myself, who can I laugh at? There is already so much seriousness about this disease. We are bringing the humor in.

When I struggle to say what I want to say, we end up playing our very own version of charades. I just seem to point at things and try to mouth the words while he laughs his ass off in attempt to guess what it is that I am trying to say. I end up laughing as well.

Don’t get me wrong, he is right there to catch my tears when they fall. But that’s what makes them so much easier to do because we laugh, love and care for each other.

What happens if you fallen and can’t remember how to get up?

Yep, it happened to me. I am not too proud to admit it either. When you have MS you learn that you have to give up all pride. You have to be willing to accept that you human and things are going to happen to you. I will laugh at those things. You have to laugh or you will become a mental midget.

I am not too proud to tell you about the things that I go through or experience. MS is a brutal thing to have. It is not a picnic or a day at Disney. It robs you of everything. Energy, thoughts, breath, sleep, hunger, pride, esteem, enthusiasm, and so much more.

My mind says that I can do this and I can do that. But the minute I stand up my body says different. I just got put back on Aubagio so I am hoping that I can get some relief. I hope that I can get to the point where I am not going through so many symptoms. I will never be myself again but I want this to slow down some. It is aggressive. I just want it to slow the fuck down!!!

So there is this thing called the MS FOG. You suddenly forget what you are doing, saying, or going. You are in a fog. You stutter in attempt to find the words you want to say. You stumble trying to figure out how to make your mind get to where you want it to be. You know what you want to do and say but nothing is cooperating with you.

You know that you want a drink of water in your favorite cup but all you can say is that you want fluid in a sippy thingy. Alot of times all you can do is get frustrated and point.

So back to my relapse.

I was going to go get my prescriptions. I was feeling pretty good really. I went out to the truck. I couldn’t get in to it. It wasn’t parked in the usual spot so it was higher than usual. I tried to get in it but I was being attacked by the fire ants something fierce!!!

I had to relent and head back to the house. I made it to the car trailer where I had to set down for a few minutes. I then made it to the front porch. Again I had to sit down and get my strength back. I all of a sudden started getting rumblings in my stomach. (good ole side effects of the medication I am taking for MS).. Geesus not now!!

I gathered up all of my strength and speed and hurried up the ramp and unlocked my door and as I was waddling to my bathroom I was losing all control of my bowels. Yep today was not my day. I made it to the bathroom and I grabbed my extra large wipes and began the cleanup. While this was taking place who should call me but my loving hubby.. I can’t let on what is going on.

This is race weekend and it is the only time he can escape it all. He can escape work, me and any other stress he might have. He needs this. He does so much for me and he needs this outlet. He worries about me so damn much. I will not take this away from him. So I talk to him about other things.

Back to the matter at hand. I finally get all cleaned up and I thank God for the extra large wipes because they are a God send let me tell you!!! I make it into my bedroom and I try to sit down on my bed and I don’t have enough strength to quite make it and I slide off. I am now on the floor, not where I wanted to be because I will never be able to get myself up from here.

Thank God I have a basket of clothes near me. I get semi dressed. I put a few things in my rollator (walker). I am going to crawl out to the living room and see if I can get into the recliner. Well guess what? I can’t remember how to get up? That’s the funny thing about MS. It stops certain messages from getting to certain areas needed.

I know that I have to get on my knees, then I have to get on one leg and then grab unto the cushions but I cannot for the life of me remember what to do next? Maybe I need to switch legs? Maybe I don’t grab the cushion, maybe I grab the arms? But whatever it is I cannot figure out what to do next. For three hours I am stumped.

I sit on the floor and I wait until I hopefully remember. I watch TV. I read a book. I play on my tablet. I keep trying. I want to get in the recliner before Rick gets home so he is none of the wiser but that doesn’t look like it is going to happen. He comes home, and I explain just a minimal amount of information that I can’t remember how to get up.

He does not want to know anything more and I didn’t want to tell him anything more. He thus explained to me how to get up. So now I know. Duh….. Oh guess what UPS delivered today? My new wheelchair!!! It was delivered while I was on the floor.. Funny huh???!!! I was laughing..it was ironic and just perfect for the day.

But hey Rick reminded me that I at least accomplished a chore off of my list. I dusted the floors!!! 🤣🌝You gotta laugh at it!!!

If you have lemons, make lemonade!!!

Let me tell you what gets on my already gnawed on, rattled nerves… Other than MS…..

Grab a drink and a snack because you are going to be here for awhile. I am going to unload quite a bit of my pet peeves upon you. I am upset, saddened, riled up, disappointed, and appalled at people who say that they are my friends but…….

I am so sick and tired of hearing these sentences : ” I didn’t want to bother you because you have enough to worry about” or ” I didn’t want to trouble you with my problems because you have enough on your plate”.

OH MY EFFEN GAWD!!!!!

I went from talking or texting around ten people down to barely one. This doesn’t include my husband. I tell him everything. I have too because he is my rock. Then there is my therapist and my psychiatrist. I pay them to listen to me. And I have to drive to see them. My husband is my everything and I have to tell him everything I am going through.

But as far as my friends go.. Where are you? Please don’t use that lame as excuse. You would rather leave me alone with my thoughts? Leave me alone and isolated? Do you ever think that I may need a distraction away from my crippling disorder? That maybe I would love to help you with whatever you are going through? Or maybe I need to feel helpful and needed?

Or maybe I need to talk about what is going on with my life.?

Ignoring it isn’t going to make it go away nor is it going to make me get better. What it does do is alienate me and makes me feel like I no longer matter to you. I only mattered when I could do things. I did not ask for this. Trust me I didn’t!!

I miss the old me more than you do. She is still here. I never lost my personality or my sense of humor. I have just sometimes lose the use of my legs and arms and I sometimes struggle with my words and thoughts. I fall and I get tired easily. However, I have a cane, a rollator and now a wheelchair. So I am making things a little easier for you and me.

And please do not patronize me! If I happen to call you or text you, DO NOT!! Tell me that you were just getting ready to call me or text me!!! I know that you are lying through your frickin teeth!! I may be disabled but I am far from stupid!! I can hear the “oh dammit” in your voice. The last thing I want to be is a damn burden to you or anyone. I just wanted to say hi.

Yes I understand that the phone runs both ways. (I have always loved that comeback line). Maybe I should be better at the communication thing.

They say that some people come into your life for a reason. They may stay for a while or forever but some are here to teach a lesson and leave. Maybe I am that person who is to leave? Maybe it is time for me to walk away and I have just been fighting it.?

I have done my job and now I have to go……. Farewell my friends.

The four year fight is finally over but my struggle is forever.

I finally won my case and I am now officially on Social Security Disability Insurance. I am officially deemed a disabled person and can receive benefits. I have fought for four years and been through so much shit. I have seen so many doctors and specialists. I have spent so much money that I didn’t have. But my relationship with my husband grew stronger and our faith remained true.

I knew that eventually I would win. I just couldn’t give up. I had so much time invested in that battle. I would wish on every star, every rainbow, and every wishbone. Every feather I found was a sign. I prayed every day and night. I made sure that I kept my Karma clean. I was doing everything I possibly could to ensure that this time I was going to be approved.

It wasn’t until I was diagnosed with MS that I was actually approved. All of my problems were actually MS. No one knew, no one had any inclinations that it could be that. I was just misdiagnosed all that time. I was actually losing again until my ms neurologist did the test because she said four years was way too long to be fighting. Within two weeks I had won.

That fight is over but I still have MS.

But you know what? I survived breast and colon cancer. I survived domestic violence. So I can do this too.

My husband says that I should write a book, I think that I shall.

Now for the rest of the story……

I refuse to give up my independence. I refuse to give up who I am. I may have MS but dammit I am not going to just sit here in diapers and let it take away my dignity!!! You know what I am going to do? I am going to write a letter to all of the makers of adult diapers and ask them why we can’t have “fun looking” diapers?

Why are they only in white? We already have issues with the fact that we have a wear the damn things. But can you please at least give them some sort of pizzazz? Sure leave them in the normal big ass baby diaper white for those who have a weird fetish thing going on.

We want colors and flowers and such. For example. I would like to have dragons, butterflies, bunnies, crayons, birdhouses, baby groot, cancer ribbons etc. I would like purple, dark blue, teal, pink and pastel colors for example. Take a poll from others to get a broad range for more ideas.

We spend a lot of money on these damn things and we have to wear them. Should we not be semi happy with what we are wearing? Toddlers have cool diapers and they can’t say shit about what they are wearing!!! They don’t give a rats ass about what their diapers look like, it’s their parents who are concerned about their popularity and such. Can’t be caught with the kid wearing a plain ugly white diaper, what would society think of them?

I want disability things to be stylish. Not mundane. We deserve to be able have nice things. Not drabbish shit. We are already fighting for our independence. We are losing so much more than anyone can ever imagine. Don’t let us lose our dignity.

I have a butterfly cane. My walker /rollater is hot pink with a zebra striped basket. I refuse to be drab and depressed. Even my t-shirts that represent the disease are funny and sarcastic.

The struggle is real but we have to be flexible with our needs and such. We cannot lose ourselves in the process. We must remember to laugh. We have to talk about how we feel. Be honest about everything. If you need anything, please ask. If you are unhappy, speak up! TALK! LAUGH!! IT’S ALL ABOUT YOU!!! CRY IF YOU NEED TO!!! NEVER STOP DOING SOMETHING!!! JUST LIVE LIFE!!

I am extremely sarcastic and hilariously funny but in reality I am just being brutally honest…

With that being said, if you know me and have experienced my sarcasm you know how I am. But what if I was to tell you that I was actually holding back? I didn’t want to hurt people’s feelings, not really. I mean if I truly said what I wanted to, I would be classified as heartless and cruel.

Today I will give you a glimpse of what I mean. I need to get it off my chest and reveal my dark side.

Not all babies are cute. Nope.. Some of them are just plain ass uglier than a spider monkey baby. And that is ugly!! Look it up!! Please do, I will wait.. You have to do that because spider monkey babies are butt ugly let me tell you.

Some people’s babies you see, you immediately have to stop yourself from saying “Whoa!” out loud. You are just praying that you don’t have to kiss it or hold it. You are searching really hard for a nice compliment. But your momma taught you that if you didn’t have anything nice to say don’t say anything at all. So what do you do??

There are some people who truly believe that they are funny, but in reality they are extremely obnoxious and irritating. These are the ones that I love to interact with because they have no idea what I am saying. They just assume that I am frickin hilarious as hell. But I am really attacking them with my sarcasm.

Yet these are also the ones that drive me nuts because they are clingy. They will confront you about something while you are doing something else, or while you are with someone else. For example : they sent you a friend request through Facebook two days ago and you have yet to accept. They will confront you like it is a major deal.

You will be talking to someone and they will waddle up and loudly state that “did you know that Wendy hasn’t accepted my friend request and it has been over a week? Apparently she doesn’t like me or she has enough friends”. This crap will continue to happen until I actually say that I have enough mentality unstable friends and I don’t need any more. Or Facebook put an alert on your request because they seen that you were a closet psycho.

She will laugh her ass off but I am being serious. I will be even worse but she thinks that I am frickin hilarious. I am but that is besides the point. She is not only annoying with me but with so many other people.

There are people like this on television too. I will actually stop watching a particular show when this person is on it because she annoys the Frick out of me. She is not funny and you can tell that others find her extremely bothersome. My question is, why do they keep her around? She’s mean and her voice gets on your nerves like nails on a chalkboard. The only thing is, they can’t insult her.

Did I forget to tell you that I am a bitch?

Yes I am sarcastic. I can hurt your feelings with just my words. I can insult you without you even realizing it until you get home. But then again I can use my sarcasm to make you smile, laugh and feel better. I use my sarcasm for good and evil. Sometimes I do it to make myself feel better.

I hate shopping but I love to people watch. I think that should be a sport. If you have never done it before you should. You haven’t lived until you sat down in a store or mall and just watched the people. Dedicate some time to fully appreciate this experience. And I recommend that you have a snack and a drink. Hell I recommend that you diaper up so you don’t waste any time going to the bathroom. LOL….

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