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

health · multiple sclerosis · Pain · Research

Living with MS – Newly Diagnosed

SMACK!!! That’s what it felt like for me when I was told I had MS. Fear, anger, depression, confusion, why, why, why, and a whole bunch more expletive feelings which I will not mention! 😛

I see so many around the net with their well meaning advice to MS newbies. The problem is they are putting their MS on everyone else. Meaning, what happened to them will surely happen to you. And, yes, similar things may happen, but never the exact same.

I watched a video one day and the woman said that MS IS a progressive disease and at some point all will progress! Sorry, BULLSHIT! There are people who have MS and never ‘relapse’ or progress. They can stay in remission and never have another attack. This is the type of information that can send a newbie into a very quick state of depression.

We are all different in our MS as we are in our lives. No two people will have the same exact journey with their MS. It may be similar at times, but never the same.

My advice to newbies, listen to no one, not even me! lol Do your research, talk to your doctor, look into the medications to see if they are right for you. Research, research, research.

What I will say straight out, eat right [no more sugar free, no processed foods, etc], light exercise, yoga for MS, contact your local MS Society, find an MS counselor. My counselor, Margo, has helped me through many a hard time in the past 11 years. Find out about the medications, study up on them.

For me, and only me, I no longer do any injections. There was no proof they helped progressive forms. For me, and only me, the side effects were not worth it. I do however take medications for pain [yes MS can cause pain] and depression/anxiety. I did injections for 7.5-8 years. Since being off of them for 4 years now, I do feel better. BUT, that is my journey and it may not be yours!

You may never end up in a wheel-chariot, you may never need walking devices. So, do not let others scare you. Get your information on your own and never let anyone tell you what you need to do for your MS journey.

I wish you…

Blessings and Hope…

My mini disclaimer: These blogs are from my perspective of my life with Chronic Progressive Multiple Sclerosis. I am not a doctor and will never tell anyone what they should do for their MS. We are all different in our MS journeys as we are in our lives.