Animals · boredom · confession · Depression · FUNNY · health · health insurance · hope · medical · mindless-thoughts · multiple sclerosis · primary progressive MS · Ramblings · strength · stupid_stuff · Wheelchair

Some days…

Seriously, some days I wonder why the hell I even bother waking up. No, I don’t mean the alternative. It just gets harder and harder it seems, to be trapped in this bed. Three months ago I was at the point where I didn’t care anymore. I kept my self medicated so I didn’t have to think about being in this prison. But then, I got help. My mind set changed and I saw that there was some hope left.  In a perfect world I would’ve been able to remain there until I could actually get up on my own. And no, I don’t mean up being a dancing fool, just able to transfer myself from my bed to my wheelchair.  In this world, insurance would have none of that. 😳

So I’ve been lying here for the last two days, angry and a little bit lost. It seems that since I had a glimpse of what might happen, I am not handling being trapped very well anymore. Hell, without the help I need, nothing is going to change. I feel like I’m fooling myself in a sense when I say that I can do this on my own. I want to keep that positive facade going so everyone thinks everything’s great… but it’s not. And no, I’m not giving up, but I am looking for alternatives. 🤔

I’ve been mindlessly watching movies for the last two days. Anything to keep my mind off of everything that I cannot do anymore. As I’m watching I constantly wiggle my butt 😏 move my arms 💪🏻 and try and strengthen myself. But in all honesty, that’s not going to change very much for me.  Right now while I’m talk typing, I’m wiggling my hips back-and-forth. Just keep moving is my new motto, and moving is what I will keep doing as much as I can. If only my dogs 🐶 had opposable thumbs and could understand me and be able to talk  and be strong enough to lift me up, everything would be aces. 😂  It could happen.

Okay, back to the real world. I think the worst part for me is that in my mind I can see myself moving my legs enough to be able to get transferred to my wheelchair. I can’t explain it properly. Sometimes as I’m lying here I can almost feel my body move on its own. I know that sounds like some crazy  psychotic shit. LOL  I wish I had the proper words for it. But I am literally drawing a blank. It’s like I can see myself outside of myself. Okay, now I’m  really going in to the realms of crazy psycho woman. 🤣  And I think I just said back to the real world. Welcome to my mind. 😳

I am now going to bid you farewell for the night.  You can thank me later. 💋

Have courage and be kind 🖤

 

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Being Defeated is NOT an Option!

Yesterday was not one of my better days. I had in-home physical therapy in the morning and then my appointment with Dr. Nasser in the afternoon. I was feeling okay in the morning and after physical therapy. All of a sudden it felt like a Mack truck had run over me. I just started feeling queasy and was having a hard time sitting up. At around 1 PM we started getting me ready for my appointment. I am unable to dress myself so I need to be rolled and moved a lot. The pain was unimaginable. By the time I was dressed, leg braces on, and Hoyer lifted in to my power chair, I was done! I could’ve canceled my appointment, but I knew I needed to go. He deals with my pain management, so I needed to go badly. The drive was excruciating. When we got there it was 83°, and heat is not my friend. The combination of everything started to bring about a little bit of depression. I was angry. I’ve been trying so hard to get better and to feel better… then this hits me. I felt like I was being punished for getting dressed. LOL I know that sounds crazy, but that’s how I was feeling.

Bottom line, I was feeling defeated, I’m not gonna lie!

By the time I got into his office I felt like I was going to be sick. Then I realized that my Hydro flask had leaked water all inside of my purse. It looked like I peed myself. Which, I’ve done before, but this time it wasn’t me. LOL Roger took my purse outside and dumped all the water out. He left to go upstairs this doctors appointment and I went into the room for my doctors appointment. The room was so small and it was so hot in there I thought I was going to pass out. Thankfully Roger’s  appointment finished before my doctor came in the room, so he came in with me. Sometimes I just need my hubby. Sometimes! 😉

My doctor finally came in the room, we exchanged pleasantries, and then took care of business. I got my medications refilled and hopefully four more physical therapy appointments. I explained I was a little perturbed that someone had dropped the ball because it took three weeks before I even got physical therapy started after I left the rehab. But, I have to let that kind of shit go because all it does is upset me. Those of us that deal with chronic illness and doctors know that many times we are not the priority. While my time in rehab was awesome, follow has not been the best. Luckily, I am a little bit of… okay a-lot-a-bit of a bitch, and when I set my mind something… nothing will stop me!

We wanted to go grocery shopping after our doctors appointments, but that wasn’t happening! By the time we got home my pain was so intense I just wanted to get into my bed and hide under the covers. And that is what I did! There were a lot of tears and, again a lot of feelings of defeat. I started second-guessing myself. All I could think was, if doing the little stuff that I did was going to knock me the fuck out like it did, then what’s the point? Is it ever going to be easier? Do I want to keep putting myself through the horrific pain every time I move? The answers are: I’m primary progressive and yes the little things probably will kick my ass, it’s probably not going to get easier, and I do have to put myself through the pain if I want to get better.

I may be down right now, but I will never be out.

Have Courage and Be Kind

** again, I’m sorry for bad grammar, typos, run on sentences. I’m a business major not an English major. LOL PEACE!

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Must re-charge…

Yesterday I went to see my neurologist. I finally got to use my new wheelchair.

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When the doctor came in the room he looked at me and said, “You look so good!! No one would know you have primary progressive MS.“ I’m never really sure what to say when I hear something like that, so I just smile. We discussed the infusion, the newest DMD (disease modifying drugs), Ocrevus.  He said he would get an appointment for me and the drug rep as soon as possible. He is very worried about the ‘serious‘ side effects. We all know that the medications for MS do come with very serious side effects. The problem for me, is my urostomy. I am prone to kidney and bladder infections as well as kidney and bladder stones. Because my immune system is overactive, it’s fights off some of the infection. If I am put on a medication that suppresses my immune system, I could very easily become septic. So I’m kind of screwed. At least he is giving me the option and I will be talking to the drug rep about it. Hell, I haven’t had a cold or a flu for so many years thanks to my overactive immune system. The only time I have gotten sick was when I was on a couple of the DMD‘S many years ago.

Then I did my normal, “I need prescriptions“. The main medication I need is the daily antibiotic I have to take, twice a day, for my issues. Rapture! LOL  and we definitely cannot forget my antidepressants. Without those no one wants to be around me. 😈

After that we went to Walgreens to pick up my new prescriptions and then we went and got some dinner. I was only up for about three hours, but it totally kicked my ass. Today I am running on empty.

Must re-charge

Sadly that is what MS does to us… At least the majority of us. It’s very rare that we can go and do things, and then be able to go and do things the next day. It’s very depressing, especially when you were someone who was always on the go. This disease changes is and takes away everything we once were. That is why we must be stronger than our MS. We must fight it every day, which sucks hairy balls, but that’s what we have to do. And we do it because we are warriors!

                           Have courage and be kind

** I will be back with my positivity journey very soon. So much love to all! ♥️

FUNNY · Happiness · Ramblings · RANDOM · stupid_stuff

Do you remember?

The Banana Splits TV show! Total blast from the past!

The series was produced by Hanna-Barbera Productions, and ran for 31 episodes on NBC Saturday mornings, from September 7, 1968 to September 5, 1970.

The Banana Splits
The Banana Splits

Theme song:

Tra la la, la la la la.
Tra la la, la la la la.
Tra la la, la la la la.
Tra la la, la la la la.

One banana, two banana, three banana, four.
Four bananas make a bunch and so do many more.
Over hill and highway the banana buggies go
Comin’ on to bring you The Banana Splits Show.

Makin up a mess of fun
Makin up a mess of fun
Lot’s of fun for everyone.

Tra la la, la la la la.
Tra la la, la la la la.
Tra la la, la la la la.
Tra la la, la la la la.

Four banana, three banana, two banana, one.
All bananas playing in the bright warm sun.
Flippin like a pancake, poppin like a cork
Fleegle, Bingo, Drooper and Snork.

Tra la la, la la la la.
Tra la la, la la la la.
Tra la la, la la la la.
Tra la la, la la la la.

********************

Now if that didn’t make you smile, nothing will!

Love and Light

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5am… Oh Mr. Sandman!

Nights like these are beginning to piss me off. Mr. Sandman must have lost my freakin’ address. My night has been watching movies and trying to sleep.

I realized after reading yesterdays blog, I really haven’t gotten out of bed for a while now. I’ve been thinking about the ‘why’ I haven’t. If I am truly honest with myself, I know the reason… “What’s the point?” I could get up and sit in my wheel-chariot, but then my ankles become kankles, and I really hate that. I’m no longer able to drive, so I can’t just get up and go out. Unless I have help, I can’t even get out of my bed to get in my chair. So, again, “What’s the point?” I feel safe here. I really hate being out in public. I’m in a body I hate, and frankly I don’t like people. I’m not me anymore.

Some might say I’m feeling sorry for myself. Well DUH! I’m fucking human, of course I do at times. Anyone dealing with a progressive illness is lying if they say they never feel sorry for themselves. It’s human nature. I also feel anger, sadness, emptiness, loneliness, and the list goes on. My body is broken and it’s messing with my head. I try so hard to find the ‘positives’ of life, but when you can’t even sit up in bed without someone pulling you up by your arm, positivity is hard to find. Then the fear sets in. Will tomorrow be the day I wake up and my body no longer moves at all? Every night that thought crosses my mind. I’ve lost 2 dear friends, younger than me, to complications of PPMS. It’s fucking scary. And please don’t anyone say it could be worse! This IS my ‘worse’. Death would be easier. I’m so tired of fighting this all the time. But, I’ve never been a quitter, so death is not an option. But, I’m just so fucking tired!!

I know some of my emotions right now stem from the loss of my mom. But honestly, there’s nothing wrong with telling it like it is… the cold hard truth. So many people with with debilitating illnesses keep their inner thoughts to themselves for fear of what others might think. Yes, I think of death, and how much easier it would be. Will I go there? NO! But, the thought is in my head at times. It’s much healthier to talk about it then keep it bottled up inside. People with disabilities unite!! It’s okay to be sad, it’s okay to feel sorry for ourselves, it’s okay to be angry as hell. We need to vent it out in order to heal our minds. Honestly, if the ‘healthies’ and/or others don’t like it or want to hear it, fuck them! They’re not worthy of us in the first place. You really do find out who your try friends are when illness [serious illness, not a cold 😛 ] strikes.

People tell me all the time to think of the good things; family and my friends who love me. DUH, I know this, but I’d also like a little quality of life. No one but me lives in my body. No one but me feels my emotional and constant physical pain. My body no longer works, I can’t do anything without someone there to help me. My independence is gone. When my kids are in school and hubby is at work and I’m home alone, it’s terrifying. I can’t get out of bed or do anything for fear of falling and hurting myself. It feels like i’m in jail.

There’s a line from one of my favorite movies, Last Holiday, that sums it up. “I would like to be cremated. I spent my whole life in a box. I don’t want to be buried in one.”

I know kind of depressing, but my feelings in a nutshell.

 I’m not getting better. I will keep progressing. Scary part is that progression at this point is heading towards total paralysis. Oh joy!

I am looking in to a new neurologist. After 16 years with the same one I feel he’s getting a bit lax. I’m also looking in to a wheel-chariot that has a reclining and raising option. I’ve been looking for clinical trials for PPMS, but most say the patient needs to be able to walk 20 feet to qualify. Are you fucking kidding me. I even looked in to a trial for incontinence, and didn’t qualify. SERIOUSLY!! I’m the incontinent Queen for fucks sake. If they can help me, they can help anyone! 😉 There’s all kinds of new medications for RRMS. Shit, if they could find a medication for the progressive form, that works, they could control RRMS completely. Get on it you researching fools!!

Well peeps, it’s now after 6am. Think I’ll find another movie to watch. Preferably something boring that will put me to sleep. Where’s my ole economics professor when I need him. lmao

A quick note, I’m reading some cool spell books. Who knows i may be able to cure myself. I believe in the power of nature and balance. Damn, I’ve tried everything else, it can’t hurt to give this a go. I’ll keep you posted.

Ta-Ta for now. Love and Light