Archive for the ‘Wheelchair’ Category

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! ♥️

All about Dr. Hottie! His name is Dr. Thomas Nasser, DO. This part is about how he helped me start my new journey.

By now I had seen Dr. Muscles and awesome Dr. Pretty. [the psychiatrist] I truly need to find out their real names. All of a sudden the curtain opened and this very attractive man walked in my room. He introduced himself as Dr. Nasser. I looked at him and apologized because I told him they they sent me the wrong Dr. Nasser. You see his wife, Dr. Susan Nasser, is my primary care doctor. He laughed a little and said,” you must mean my wife.” All I could think of was they must be the power couple in the valley here. He explained that he was a pain management specialist and that he ran the Rehabilitation Renter at Palmdale Regional Medical Center. He had been told of my plight by Dr. Muscles. He wanted to ask me if I wanted to go to his rehab to get help. Again, for those of you that know me when I know something, I’m always right. I explained that I have primary progressive MS and there really isn’t anything he could do for me. Again, he just smiled and basically he told me, well then there’s nothing to lose right?

In this moment I had so many things going through my head. I was drugged up on morphine, and everything was still hazy about what had happened the day before. Hell this might’ve been the same day I truly can’t remember. All I  could think about was being told for so many years there wasn’t much I could do once the progression started. The new medication, for the progressive forms of MS [Ocrevus], I could not go on. Something about being too disabled. I will talk about that another time. All the while he just stood there waiting for my response.

I looked at him and said. “I don’t think you know what you’re dealing with, but yes, I would love to try it.” I told him that my insurance probably wouldn’t do it, and he told me not to worry about that. When he left the room I was scared. The pain I have on a daily basis is about a 10+. But As my fellow MS’ers know we learn to deal with it. I knew doing this was going to be hell-a painful and hell-a hard. And there was that little asshole voice saying ‘it won’t work.’ And, again, I was scared. No, fuck that, I was PETRIFIED!! Could I deal with the pain? Could it, would it, really work. NO, it won’t work!! Nothing will help!! That damn voice would not shut the fuck up!! Then somehow… from somewhere… a strange feeling overtook me. HOPE!! Real hope. A feeling that I had lost many years ago. You see hope was my mantra. Then, hope became paralyzing. Hope became a word that made me cry. But, at this moment, hope was back. I’m not a great writer, so bare with me as I try to explain the feelings that took over. I see/feel dark and light. Dark and light clouds, if you will. My cloud was pitch-black and gloomy over me. I felt the cloud ‘open’ and light enveloped me. I was shaking and tears were streaming down my face. Fifty-three years of negative forces went flooding past me and a rainbow of positivity swept over me. Maybe, just maybe, this would work. Maybe, just maybe, I could get my life back and save my family.

Now the real journey begins…

Have Courage and Be Kind

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‘Have Courage and Be Kind’ is a beautiful quote from this 2015 version of Cinderella.

I’ve been thinking of a way to approach the week after I hit my crossroads. When the ambulance dropped me off at the Antelope Valley Hospital I wasn’t sure what I was going to do or why I was there. I explained I had a bad infection [captain obvious], but I said nothing about my suicidal thoughts. So they did what they always do, hooked up my power-port, and filled me up with morphine. Then, of course, they started a treatment of antibiotics. I was in and out and of it and was feeling pretty good with the morphine. At some point, and this is where gets hazy, a doctor that I had not yet met, showed up in my room.

And so it begins…

He was completely shaven, bald as a billiard. Tanned skin and quite good looking. It was very obvious the man takes very good care of himself. But, then he pissed me off…for a minute. He proceeded to ask me why I was there. WTF, look at my pee bag dude, it’s dark as fuck. Yes, I said that. He then asked me ‘why I did not go to my doctor since obviously it had been this way for a while’. I just looked at him like, seriously?!! Then he kept asking me over and over again, why was there, why now, why was I there, why now!!! Those who know me, know I do not like to be pressured or put on the spot. So I looked at him like he was fucking crazy and an asshole for asking me that over and over again. Then, he asked me again, ‘WHY ARE YOU HERE!!! I snapped, and 21 years of my MS diagnosis came out like verbal diarrhea, 21 years of frustration came pouring out. I was screaming at that point… ‘Do you want to know why I’m here, do you really want to know!’ I was screaming and crying telling him, “FINE… I wanted to kill myself is that what you want to hear. I was 32 years old with 3 babies under 3 when I was dx’ed. Why did God forsake me?!! Now I’m 53, and my kids have never known me well. Now, I’m paralyzed from the waist down and for the last 4 1/2 years years completely bedridden. Now my arms stopped working. I told my my family when my arms go, I’m going too!! I could hear my daughter asking me if I was going to go now? My family is dying because of this disease because it has taken over my house. My family will be better off without me! I’m a burden and all the doctors did was throw me in bed and drugged me up and ripped open my stomach because nobody wanted to help me. Instead they threw a colostomy and a urostomy bag on me and left me in the bed to die. My husband is dying inside my children are dying inside because nobody gave two shits about us, no doctor wants to really help us! I didn’t go to the doctor because I can no longer afford a caregiver and I had no one to drive me!” As I was screaming I didn’t realize that there were about 20 people in the room and people walking by. I just kept screaming how I was thrown away and nobody cared. It was easier for the doctors to just put me in bed because that’s what primary progressive MS does. You just progress and then you die. I’m sure I looked a sight, as I was ugly crying. I know that snot was running all down my face and most likely in to my mouth. I know, I know…TMI! This guy called me on my shit, no one does that!! And how did he know? How did he see my pain and how did he know I wanted to end my life? How did he know why I was really there?

Then, silence. I was breathing so fast and looking around the room. Some were crying, some just looking at me like they wanted to hug me. Someone handed me a lil’ box of tissues. Then his voice broke the silence. He said, “We’re going to make you happy again.” I looked at him like he was crazy. Didn’t he know, I have primary progressive multiple sclerosis, there is nothing he can do to help me or make me happy again. He smiled and said he’d be back. A few minutes later a woman entered the room. She was the psychiatrist on call. She looked at me and said, “You never sleep, do you?” I looked at her and said, “No.” She looked at my file saw that I was on Effexor and explained she would leave me on that, but she was going to add something else. Something that would, help me sleep and make me happy again. I looked at her like she was crazy too. I didn’t think they understood what they were dealing with. Dr. Muscles [I’m trying to find his real name] came back in the room to see how I was doing after my meltdown. I just looked at him and said, “Thank you.”

The next doctor he sent my way, changed my life!

Part 3 tomorrow. Sorry if my writing is not perfect. I never said I was a writer. LOL

Have Courage and Be Kind

 

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!

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To start off, I must say that this blog is based on my PPMS and my experience with it. While some may dis-agree, please do so in an adult manner. I will not downplay your feelings, so please do not downplay mine. With that being said…here goes.

At this point there is NO cure for Multiple Sclerosis! None, nada, zip. Eating healthy and living a clean lifestyle will help, but it will not cure. There are medications to slow the progression, but not stop or cure it. This year a new medication is being released [finally] to deal with the progressive forms of MS. While this is excellent news, it won’t do much for me as significant damage has already been done to my body.

A ‘cure’ in my eyes will be able to help all types of MS, not just the least severe forms. It will also be able to replace the myelin and help to restore nerve functions. That is a cure. While stem cell research has shown to halt MS, there are no long term stats yet to show it will stay that way. But, I will say, if I could afford it i’d be all over it. The sad part is I may not even qualify for HSCT due to the severity of my damage. So, in my eyes, not even close to a cure. A cure should be able to help everyone with the disease. IMHO… which isn’t so humble.

I believe in a cure… But, until people see humans as more important than money, we won’t see the cure! There is no ‘profit’ in a cure. And that is the sad reality!

Always hoping

Always hoping

Peace!!

Facebook has brought me together with some fabulous people who battle the MonSter with me. Heather Leffel is an amazing young woman who shares so much of herself and of the struggles we, fighting MS, go through. Recently she did a video on “MS and the Losses We Suffer“. Together, with Kate Milliken, a video was compiled of excerpts from people suffering from MS [all types] and the losses they have experienced.

I am honored to be a part of this amazing project! I believe the Universe sends us messages from time to time, when we truly need them. I have been going through a very rough time as of late. I was losing hope… Then, BAM, the finished video showed up on my FB feed. As I watched it through my tears, I felt the hope returning to my soul. I was so inspired by those who shared their hearts.

So, without further ado…

 

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Have a fun and safe Evening! Keep your furbabies safe and away from opening doors.

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Last night was the pumpkin carving party at Don’s house. Here are the wonderful pumpkins that were carved. It was a fun time for all.

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I started out dressing like a Vampire, but the wig cap/wig gave me a headache. My fitted Vampire teeth were a pain in the mouth! lol

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So, ended up as a Witch. The lace on my hat is over 90 years old. It was my Nana’s. There is also a black rose with it. This is my favorite Witch hat. Yes, I have more than one. 😛

WITCHYME

Hat made in 2008. Still my fav!!

Hat made in 2008. Still my fav!!

My fabulous make-up was done by Steph. She made me look damn good for a 51 year old. lol

Even with the pain, I had so much fun! I have let fear, being self-conscious, and embarrassment from my illness stop me from doing so many things. I know there will be times when my condition will keep from doing certain things. It makes me sad to not be able to be ‘normal’. One thing is for sure; I am blessed with a support team that always has my back. They never give up on me, even when I give up on myself. I am one of the lucky ones!

A Happy Halloween to all!

Love and Light!