anger · confession · dehumanization · Depression · Fear · FUCK · health · health insurance · healthcare · HELL · hope · lonliness · medical · multiple sclerosis · Pain · primary progressive MS · Quotes · Ramblings · RANDOM · strength · Wheelchair

Fear!

I try to live my life minute by minute because anything else is overwhelming. I know that every living person wonders about their future and what it will bring. Unfortunately when you live with chronic illness that wonder many times turns into fear. Every night I go to bed knowing that when I wake in the morning nothing will be different and it may possibly be worse. 😢 I will still be trapped in this bed, I will still have pain, and I will still have sorrow.  But, I will still wake up and try to get through my day as best as I can.

I am human and I can’t stop thinking about what may happen. Statistically I know exactly what it’s going to happen to me. I have an aggressive form of primary progressive MS and it isn’t going to get better. I have now been bedridden for four years and eight months and it doesn’t look like it’s going to change anytime soon. Unfortunately, for me, rehab aggravated my back fracture that I never knew I had. With that has come so many problems. Whenever my hips are put into the proper aligned position the pain that comes with that seriously makes me not want to move at all or even try to  make it through the day. The pain has been going on for a few months now and it is taking over my life. The pain in my lower back is also  excruciating to the point where I can’t even sit up straight for a period of time without becoming nauseous. We discussed a facet block but I’m not sure even that will help with my lower hip pain. My husband needs a facet block but unfortunately our crappy insurance has denied it. Even though he’s had them before. So now we must fight the appeals process. I cannot do mine until he gets his done, so I think we’re both shit out of luck.

Again, I know everyone’s future is unsure.  Hell the minute we are born we start to die. But most people can look ahead in their future talk about wonderful vacations they may be going on family get together’s etc. I cannot do that because at any given time I may not feel well enough to do anything. Unless they can figure out something with my pain I really have no life to speak of. All my future has in it is this bed in this room surrounded by these four walls. When you’ve been bedridden for as long as I have been you can’t just get up get into a wheelchair and go about your day.

It’s an adventure trying to out to get me dressed, in the Hoyer lift, and then into my wheelchair. After that I’m already down for the count. Just doing that pretty much takes away all my spoons for the day. 🥄🥄.  And the pain comes with doing that is like Michelle Pfeiffer in the movie witches of Eastwick. 😳 It’s hitting me hard today because I had a shower  Saturday night,  two fucking nights ago and it completely wiped me out. The pain was worse than it’s ever been and the nausea was off the charts. So I’m trying to find something and some reason to keep holding on. How do you come to terms with the fact that your future may include you being always trapped in a body that doesn’t work and left in a bed?  Lately when I watch movies all I can do is cry.  I cried for what might’ve been and what should have been. I also try very hard to understand and live with my new ‘normal’. I’m not trying to get pity or be a Debbie downer, but sometimes this shit just really gets to me. I don’t understand what the fuck I did to deserve such an aggressive form of this disgusting disease. When I was diagnosed I had three babies under three and my life was torn apart.

Fuck you multiple sclerosis

I’m just so tired. Even Warriors fall apart at times. I’m just not sure how to put myself back together this time. It was just a fucking shower and my whole body feels like it just wants to curl up and die. And the doctors don’t listen. They don’t seem to care about my back fracture, they act like it’s not a big deal. It’s almost as if they feel like, hey she has multiple sclerosis she’s bedridden there’s nothing to do. The way the pain is affecting my life I may just have to do their morphine drops under the tongue. Sadly cannabis isn’t even helping me now. So what, they’re just gonna throw morphine under my tongue and leave me to die in a bed. The worst part is if I wasn’t stricken with multiple sclerosis they would be able to fix my knees, fix my hips, fix my back. But because of my disease it’s not worth it to anyone.  Regarding the back fracture, my God, maybe that’s the reason my legs completely stopped working in November 2013. Maybe it wasn’t the MS. But they have no answers for me about that. They basically just said possibly but there’s never any way to tell.  So now I am stuck wondering and really wondering what am I gonna do for my future.  Have no worries, I will get through this and I will continue to fight. Hell, I’m a fucking MS Warrior! 🖤

Have courage and be kind

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 🖤

 

health · healthcare · hope · medical · medications · multiple sclerosis · primary progressive MS · Research · Wheelchair

DMD – Disease Modifying Drugs

When I was first diagnosed in August 1997, there were only three DMDs available; the ABC drugs – Avonex, Betaseron, Copaxone. Being primary progressive none of the medications were actually for me, but we tried Avonex hoping to slow the progression. Alas, it did not work. Then when Rebif came out, we tried that. Nope, nada, nil. Finally when Tysabri came out I got on that immediately and it seemed to be working. Unfortunately it was not nice to my liver and I had to stop taking it. 😪

What I want people to understand is that these medications are there to hopefully slow and/or stop the progression. They will not repair your myelin, they will not make you walk again. People do notice a placebo effect and think that because they’re on the medication that’s why they are walking again etc.. While that is awesome, it’s also not the case.  What these medications do is, hopefully, suppress our over active immune systems and halt the progression. So any improvement, is all YOU and your awesome strength fighting the MonSter that is MS! 💪🏻

msdamage

As you can see from the picture above our immune system eats away at the Myelin thinking that it’s bad and in its own way protecting us.  If all goes well with the DMD will stop that from happening. At this time there is no other way except for these medications too slow and/or stop the progression of the disease.

HSCT – Hematopoietic Stem Cell Transplantation, is looking very promising. I’m hoping at some point it will be available for all of the types of MS. To follow the Journey of another amazing MS Warrior, check out this blog, Making Sense Of M.S.

I am now in the process of discussing two medications with my neurologist, Ocrevus and Lemtrada. I have to be very careful because of the fact they suppress the immune system. Because of my urostomy, as I’ve mentioned before, I have constant bladder infections. So when these medications suppress my immune system it puts me at a very high risk of sepsis. So, I’m not taking any of this lightly, but I really want my progression to slow and if possible stop. If I find something bad is starting to happen then I will stop the medication, but I’m very hopeful that one of these will work. For me the benefits outweigh the risks.

I see all the time how people are going ‘med free’ and that scares me. I fully believe in a good healthy lifestyle [diet] exercise and all the that goes with that, but that will not change the progression of your disease. I hear people say that they’re out of their wheelchair[s] now etc. following this diet or that diet. And that’s awesome, but what’s happening is they’re [most likely] in remission, but the disease is still in the background doing its thing.  If you’re choosing this route, just please be careful. Make sure you get your MRIs when needed and keep your doctor in the loop. Better to be safe than sorry.

I cannot wait for the day when I read, we have found a cure for MS! I just pray it happens in my lifetime!

Until then, this is what I think of MS;

pissonms

Have Courage and be kind! ♥️

anger · Darkness · Death · dehumanization · Depression · Fear · FUCK · health · health insurance · healthcare · HELL · hope · HORROR · medical · medications · multiple sclerosis · primary progressive MS · Ramblings · strength

Ocrevus – hope lost

For over a year I have been waiting and hoping for this medication. The very FIRST medication for those of us with the severe form of MS. We are the 5-10% that have had nothing available to help, if even in a small way, our progressive form.

When i first heard of it tears streamed down my face. Then we got the news it was being fast tracked for January 2017. FDA approved and ready. We know sometimes shit happens, and it did. We were then informed March 29, 2017. Ok, thats doable. I made my neurologist appointment with tears and such hope to get the ball rolling…

What ball, there’s no rolling. My one hope, to literally save my life, is in the hands of insurance who will not cover it. This drug slows and/or stops the constant progression the few of us with MS are burdened with. My hope was it would stop my arms from being taken from me, my hands, my sight, my voice, my sensation to touch, my ability to breathe on my own. To give me a chance…

I see people talking side effects etc, they will keep the MS if they can have the Benz!!! ARE THEY FUCKING KIDDING ME??? I will deal with the side effects, hell I’ll deal with anything if my Primary Progressive MS slows and/or stops progressing.

I’m out of options here. Once my arms go, I’m done. Yes, I said it… I’m done.

So a big FUCK YOU to the 1% who run the pharmaceutical companies. You are disgusting individuals and I pray karma comes knocking at your door… and she will!!

So, thank you, for taking away my only hope to save my life. May you all rot in Hell!

ocvrevusjoke

Craziness · health · Ramblings · RANDOM

Hope is in the air.

I’m finally back to seeing my neurologist on a regular basis. Last month we decided to have me re-fitted for AFO braces to stabilize my ankles. [foot drop]

afo

I was fitted for both ankles yesterday. While I am unable to walk, we are hoping these braces will help me to stand up using my sit-to-stand. I have not been able to stand due to my foot drop[s] and weakness in my knees and hips. I am hoping for a good outcome. I know it will take some time and a lot of pain, but even the pain will be worth it to me. It was tough fitting me for the braces as my feet literally just hang down. It took some serious stretching and pain to get my feet casted. But, WE DID IT!!

This month my neuro and I decided I will start Tysabri infusions again.

tysabri

I started Tysabri back in 2011. My blog mentioning it is here. After some time on it I contracted hepA [medicinal] from the medication[s] I was taking. This time I am going to be very careful of the other meds I take while on Tysabri. I will be staying away from acetaminophen and any other med that may cause organ damage. I am being tested for the John Cunningham Virus (JCV) first, as JCV could lead to progressive multifocal leukoencephalopathy (PML)—that usually leads to death or severe disability. I had no issues with this 4 years ago and am hoping I have none this time around. After my AFO fittings were finished, I went by my neuro’s office and I signed all the paperwork to get the process moving along. I will try anything to help myself as I truly have nothing to lose.

Last time I ended up having a power port inserted in my chest for easier infusions, as my veins are shot. I am so glad I did not have it removed when they stopped the infusions. Maybe, somewhere inside of me I knew that one day I’d give it a go again.

I’m trying to keep a positive attitude about all of this. I know I will still have my nightly cry, but I have to get it out somehow. Thankfully, my caregiver and BFF Steph, never lets me wallow for too long.

I GOT THIS!!

health · mindless-thoughts · multiple sclerosis · Pain · Ramblings

Headaches and Spasms and Pain…Oh My!

Three day headaches does not a happy Tracy make!!

It is like water torture; constant pain, split second relief, you smile and bam it comes back. Then due to lying down for the past couple of days, my lower back is on fire, and that makes my legs spasm. Happy, happy, joy, joy!! My whole body feels weak and my parts will not work they way they need to.I’m drained an my body feels ‘floaty’. Rog said, ‘that’s cool'[gotta love him]. hmmmm No babe, not so much.  😦

I called my neuro as I am hoping he will prescribe me something for the pain[s]. My pain med. is not working [figures], all it does is take the edge off. Not acceptable. 😛

So just a quickie! lol Off to lie back down.

Blessings and Hope