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.
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!!!
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.
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!!
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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Thank you for your patience…
It has been a while since I have posted and that is because I am exhausted. It has been a week from hell. I could not have done it without my husband. I have had nonstop doctors appointments and I have gotten to the point where I just wanted to quit. I am tired. No more. But my hubby was right there with me saying that I could do this.
It all started because I was having a hard time breathing or what we call the MS HUG. But I was having it 4-5 times a week and it was lasting anywhere from an hour to an all day thing. I was told that it was a side effect of the MS drug I was taking. But my primary care physician told me to tell my neurologist about it. So I did. That immediately had me scheduled in to her office.
Hold on… I am getting ahead of myself…
I went in for my yearly physical. This was the biggie. I have to get all checked out. EKG, Mammogram, Pap smear, blood tests, you name it. All of my cancer testing are done. Every blood test imaginable is done.
Well when the EKG is done, they find a dead spot in the rhythm and another issue. This causes another problem. So since my cardiologist is retiring I have to find another. And not just any ole one but one that will be part of the special team. I get referred to one but told he’s a busy one so it may be a couple weeks before I hear from him. Well it only took two days!!!
So now I have an appointment with my neurologist, cardiologist, psychiatrist, therapist and God knows who else. My primary tells me that it is going to be a long road and she is not kidding. It is exhausting and extremely humbling. I am so damn tired and I wonder just how much I can take.
I have an excellent support team especially my husband but I am weak and I just struggle sometimes. MS is brutal and it is not a very nice thing to have. It takes all of my energy just to wipe my ass, then I have to sit there and get enough energy to stand up. Then I have to get enough energy to pull my pants up. Then I have to slowly walk out. I end up crying because I am exhausted. That is just going to the bathroom.
My husband says that there will come a time when he will have to wipe my ass and I got to thinking about it. No….. I would rather take a bullet to the head.
It’s bad enough that I am “diapering up” as he so jokingly refers it. That is a mess that I don’t wish on anyone. I am still able to get into the shower but still. I am not the person I used to be. I will never be that person. I am not ready to travel this long road. I am having more bad days than I am having good and that pisses me off. Because I am generally an optimistic person.
I am the one who has an upbeat attitude. But the past couple of days I just cannot find my positive attitude. I am so sorry for the way I am feeling. I cannot write, I cannot walk, I cannot eat, I cannot stand the smell of anything and I am so sore.
So I am going to end this blog for now. I am going to try and eat some soup and take a pain pill and turn in. I will return because this too shall pass.
I have a long road ahead of me and I just have to get my walker.
If you know me, you know that I don’t use public bathrooms. I don’t use them unless I absolutely have to. And I mean HAVE TO!!! Well yesterday I had to use it and I went to get up and I stood up and pulled my pants up and I fell. I couldn’t get back up. I was without my cell phone and beyond vulnerable. I kept trying to get up. I thought about that commercial of that elderly lady who falls in her bathroom… Yep I have become THAT person!!
I was finally rescued by my husband asking a lady to go in and check on me. The lady just happened to be a nurse. Her and my husband managed to get me up and out of there. I was embarrassed and humbled. Not to mention sore. I had already had a rough day at my doctor’s office and I just wanted to go home. But my dear hubby wanted to take me to lunch because I was fasting and knew that I was hungry.
So yesterday I had my yearly physical exam. It is extreme and covers a lot of things. I have a colonoscopy, mammogram, ekg, an extensive blood draw, pap smear and more. I have to because of being a breast and colon cancer survivor. Now with MS I have to have my blood tested. I have mitral valve prolapse syndrome x3. My valves are not good. I have two murmurs as well. So as you can imagine my ekg was not a good one at all. I have a dead spot on the right side of the heart.
So we are adding a different cardiologist to my team of specialists along with a pulmonary specialist. I refuse to be depressed about this because I am strong and I can do this. Keep dishing shit out and I will keep bouncing back. I have walked through hell and survived, I can do this. I will not whine, bitch or moan about this. I will just talk about it. Because talking about it helps.
I am all about the attention.. LOL…
I just had to throw that out there.
However, no matter how bad I am feeling I am still going to be taking my mom in law to her keytruda infusions tomorrow. She sent me an text message yesterday asking if I was going to take her, and that usually means that she wants me to really go. So I will make sure to take her. I can read between the lines and see that she is really asking me to go. She very seldom ever does that. And like I said before no matter how bad I feel, there is someone who is worse than me.
I didn’t make it to her appointment because I couldn’t get into my truck. I feel so bad but it is getting to the point where I am going to have to tell her that I am unable to take her to them.
To be continued….
No matter how bad your life is, there is someone else that has it far worse than you.
Yes that is true and generally I fail to remember that. There is someone who is dealing with a far greater hell than we could ever imagine. This private hell could be inner or outer, we have no idea what is going on with that person. It could be a terminal illness, a deep problem within themselves or it could be an issue at home.
I have never been one to take things for granted. Sure I have my moments when I fall apart and feel a tad sorry for myself but it doesn’t last long at all. Only because I have never liked how that side looks on me. I am not a whiner or a major complainer. I tend to keep things to myself. You don’t have to turn on the TV to find someone who is worse off than you, you can find it on Facebook or another social media site… Or just look in your own backyard so to speak.(yea it’s that close to you)
Life is too short so make sure that you tell your family AND friends that you love them because you never know when time will run out.
I have decided to write some letters that I may or may not ever send, but I need to write because I have been harboring some major hatred. I need to release this toxic emotion from my body s I can be completely cleansed. The hatred is like a cancer and it is not good for me. I have about 6-10 letters to write to a variety of people who have come and gone throughout my life. I highly doubt that I will send them but I will be free just by putting my feelings into words.
Life is too short for me to continue to carry this hate around.
My husband and I were talking about all of the time people spend on their phones and tablets. They are either checking their Facebook or Instagram or watching YouTube. They are missing all kinds of things because their noses are stuck in their lil square boxes of technology. Life is passing them by at an alarming rate.
My husband can have a race on with his laptop (numerous tabs open with various race items) , one on the television and he is checking his email and what not with his cell phone. He will do this for hours on the weekend. Now as for me, you give me a stack of books, sketch book, pencils, coloring book and crayons, and a book of cross words puzzles and I am good to go. I would give up both my tablet and phone. I am very se on either one of these.
Life is too short to have your nose stuck in a wireless piece of dismissal depression.
Today I had three way call between my attorney and the disability inspector for social security disability appeal. I was ready for it and had all of my ducks in a row. I keep a business card from all of the doctors that I see and I keep a very detailed pocket calendar of every appointment I have. So I could tell her every appointment that I had and I had every bit of information on every Dr she asked for.
The entire time she was talking to me, my attorney was throwing digs towards her. Things like I may be using a walker now but because of them I will be in a wheelchair next week. I have not been able to get other doctors because I am broke because I am not receiving any disability. And what is the record for the longest period of time for waiting and did you have anyone die while waiting? She was awesome. I felt a great relief after that call. I have been fighting for nearly five years.
Life is too short to give up on what you believe in. Fight for it.