Archive for the ‘healthcare’ Category

Living and existing are two very different issues. I believe most people just exist. I find this quite sad. In my situation I am only able to ‘exist’. How I wish I could truly ‘live’.

My life, ninety-five percent of it, is spent in a bed. I’m a prisoner in my own home/body and I didn’t even commit a crime. Constant back pain and edema make it hard to ‘tool’ around in my wheelchair. We can no longer afford a caregiver, so most days I’m on my own. Thank the Universe for my rescue pups.

If I sound miserable… it’s probably because I am! lol I know, not funny. The old adage, you don’t get it until you get it, is so true. I’m a realist…I have to be. I’m not going to get better or go in to remission. If I am unable to try the new medication, Ocrevus, I’m fucked. I talked to a department of my Blue Cross ins. regarding the medication and if they will cover it. I was told no at my neurons office, but figured i’d go straight to the proverbial horse. It may not even work, but I have to try. But, like my one blog says, I may not even qualify for the medication. That’s on the maker of the medication.

It is all bout the numbers, not our well-being. It’s more important to keep the percentage up then to get the medication to those of us who have severely progressed. The GREED that is America!!

For those of you [healthy peeps] reading this, just existing, get the fuck up and LIVE!!! Go on that trip you keep putting off. Wear that ‘dressy’ outfit to the grocery store. Play hooky with your kids and get to the beach or hit the park. Get out of your ‘safe’ zone and go skydiving… you know what I’m saying. LIVE PEOPLE!!! You do not know what tomorrow may bring. I NEVER thought I would get ill. I wasted so much time. Please, I beg of you, don’t make the same mistakes I did. If you can do it, do it now…

Peace out!

notdead

They promote this new medication for MS as the first medication for the progressive forms of the disease. Really? I don’t buy it. I was not able to qualify for any of the trials because,  as they explained, I am too far progressed in my disease. So, I was waiting for it to come out on the “market”. For my last blog, as you know, insurance won’t cover it, for me and many others. But as I did more reading I realized that not everyone will qualify for it either way. If you are too far along in your disease you will not be able to get on the medication. Why, because we will screw up their percentage;  Bring down the numbers. So really this new wonderful medication they are promoting all over the place is nothing more than another medication for basic MS.  It’s not a drug for the progressive forms if we can’t and/or don’t qualify for it while having the progressive form.

For me, being someone that truly needs it, it’s just another big hype of another medication that won’t help me. For those that are able to be on it, I wish you well and hope it really works for you. For the rest of us that are truly progressed, may God help us…

But, don’t hold your breath.

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

After a bad fall about a month ago, I’ve been in and out of hospital emergency rooms and spent a little bit under a week in hospital. Lotta good it did, as I’m worse now than I was before I went in. I need in-home care I need help but the doctors keep blowing me off. And my doctor’s nurses, forget about it incompetence galore!

They keep telling me they’ll call me back once they get information about in-home care. Has not happened at all. They don’t even call my prescriptions when they expire anymore. I have to call and remind them. Yeah that helps with my stress level! I’ve been with the same doctor for 17 years!

I can’t even get into what happened in my last hospital visit a couple of weeks ago as it just brings back too many awful memories. Not as bad as back in 2009-2010 but almost.

At this point I’m completely bed ridden, my legs do not work at all I can only move them if somebody moves them for me hard to transfer to my chair I won’t even get into going to the bathroom. LOL that’s way too much information… TMI!!

Bottom line I need home health care, and my doctors are ignoring me and not helping me. So me, being the bitch that I am, I have an appointment with a new neurologist on January 28 and an appointment on the 18th of this month with the new internist. I’m done, and I’m taking charge and taking back my power!

For those who know me, know I’m pissed and when I get pissed I get shit done. They know not who they are dealing with! LOL I’m done believing that this is it for me and I’ll never move again that I’m going to be stuck in a bed the rest of my life.

I Even got my new wheelchair and it’s the bomb, but I can’t even transfer to it. So what’s the fucking point right now!

Fear-Pain-Anger-Depression

I really do wonder sometimes… What’s the fucking point!

[sorry for spelling and or grammar mistakes talk text doesn’t always work exactly as it should]

need sleep...

A day for me to look forward to!!! Finally!!

My new wheel-chariot is only a heartbeat away… I hope!

Quantum Rehab

Quantum Rehab

On Tuesday a representative is coming to my home to see if I qualify for this rehab chair. Then they’ll take measurements and get started on getting me the chair of my dreams. I want it to recline, elevate my legs, and be able to rise up a few inches. I am hoping to get the base in orange for MS and animal awareness.

This is a huge deal for me. With the leg elevation option I’ll be able to get out of my bed more and maybe be able to get back to making some jewelry.

I haven’t had much to look forward to for a long time. Some may think looking forward to a wheelchair is silly, but when a wheelchair can mean independence, it’s not so silly. I love my old chair, but it cannot elevate my legs and I really need that and the other other options the new one has. I feel like a little kid getting ready for Christmas!!

Love and Light!!

Quantum Rehab

Quantum Rehab

This is the chair I need, want, and must have! It has a leg elevating option which will help my ankles not to swell. It reclines and can elevate a few inches to help reach things. I’m working on getting this sometime in the next few months. I have to jump through insurance hoops, but I’m used to that. MY neurologist is sending the store my diagnosis report, then they get with my insurance to see how much, if any, they will pay. Once that is done a representative comes to my home to get measurements, etc.

Insurance will not help much. They feel a wheelchair only needs to get you from point A to point B. It does not need elevating legs, recline, or elevation. They call those ‘luxuries’!  Are they fucking kidding me!! It’s a ‘luxury’ to elevate my legs, to recline, and make it easier to reach things? WOW!! I guess it’s a luxury to be crippled too! grrrrrr I didn’t ask for MS so why is it so hard to want to be able to have a chair that helps me live my life with MS.

I’ll do whatever I have to, to get this chair. I spend my time in bed as the chair I have is a basic model. After 20 minutes of sitting my legs swell and my lower back is in pain. This ‘new’ chair will allow me to get up and get going. I will be able to make my jewelry again because I’ll be able to elevate my legs at the table. I haven’t made anything for so long and I miss it terribly. If I have to, I’ll sell myself on the boulevard… Okay probably not, but you get my point. lmao I really need this chair. When I found it whilst surfing the net, I started crying. I saw my ‘new’ life with this chair. I want an orange base for MS and animal awareness. It will be so cool. I feel like a little kid waiting for Christmas!

I’m  back to getting the excess weight off again. I figure, if I have to be in a wheel-chariot, I’m going to be a hot bitch in a wheel-chariot! I’ve never been heavy. So this weight gain is very depressing for me. I look in the mirror and cry. Why I don’t look in the mirror much. I know if I lose the weight it will be easier for me and those who help me on a daily basis. I even turned down cherry cheesecake danish today. OMG, it was not easy! Paleo and gluten free is my lifestyle. I will do it this time… I have to.

Love and Light

As I started my new treatment this issue came in to play. On August 23, 2011 I had my first infusion of Tysabri.

My very own Tysabri bag

My very own arm!

One major side effect is Progressive multifocal leukoencephalopathy (PML), which may cause death. This medication suppresses my over active immune system due to my progressive MS, which can lead to this viral infection. I will be monitored for medicinal hepatitis [liver damage] and UTI’s. Now that my system will be suppressed I am more prone to getting other issues.

When getting ready for my appointment we [hubby and I] discussed the possibility of PML. When Roger looked at me and said that this way I can get my wish, to die, I sat open mouthed. I have stated, when in depression, that death is freedom and sometimes I do not want to wake up in the morning, I guess he took it literally. With tears welling up in my eyes I explained that I do NOT WANT to die, I just want the pain to go away. I want to walk again, to be able to hold my bladder, to be able to go out in to the sun, to be able to drive, to not have mental and physical pain… I want to play with my kids!! I will be honest… there are days I do not want to be here anymore. Unless you suffer from a serious chronic illness it is hard to grasp. But, in all actuality, I do not want to die. I just want my life back, a quality of life back.

I’m not even asking for much from this medication. I just want to be able to drive again and hold that bitch of a bladder! 😛 I’m not expecting much, as when I do my hopes are always dashed, so I am just waiting. It’s all I can do. I’ll keep fighting until my strength is gone. I need to be here to annoy my kids for a long time to come. It’s what I live for! lol

I will now go once a month for the two hour infusion. They [who the hell are they] say it can take 6 months to a year to see a difference. I’ve waited this long, so what’s another year or so. My problem is when I want something, I want it now. MS has certainly taught me patience… for the most part! [I try, really I do]

A new adventure is happening, and as always, I will go in head first! Wish me luck!

Love and Light!