Multiple Sclerosis · Primary Progressive MS · Ramblings

MS Awareness Month Day 5

I was dx’ed by a PA by my walk… the ‘drunk walk’. Years of searching and no MD could figure me out. He simply asked me to walk about 10 feet. Then he ordered an MRI. And finally I found my diagnosis. 🖤

Walking got very hard very quickly. It feels like your legs become tree trunks. And then of course if you are lucky enough to get drop foot, well you know how fun that is. #MSAwareness #MarchIsMSAwarenessMonth

Have courage and be kind!

Multiple Sclerosis · PAIN

In Dreams – Falling / Doctors

She is falling, her dress flies all around her, she sees no end, not stopping, no slowing down. Visions pass by her eyes as if she is seeing her life all around her. Pictures in her mind of days long ago. Smiles, laughter, anguish, fear, so many feelings. Faces she remembers, faces that have no meaning. Are they of people to come or of those from a past time? Falling still, has time stopped or just slowed down to let her see. She reaches out to certain pictures, places she wants time to stop and bring back to her. The dress tickles at her face as it flows around her. She cannot help but laugh.

Faster, faster she falls. It is much to dark here. Fear hits, she can feel the blood flowing through her veins. No more laughter, she wants to stop falling. She cries out, no one hears, no one is there. The faces she sees flying by her are no longer smiling. They’re distorted, angry, scared. She closes her eyes, no longer wanting to see. Two words go over and over in her mind… ‘Save me!’

© 01/16/2010


I went to my neurologist yesterday. Every time I go, I think part of me feels that this time will be it. There will be a new medication, a cure. See, sometimes I do think positive thoughts. 🙂 But, alas, not. I am falling more on my 18.2 foot trek to the potty with my walker. I spoke to him regarding a medication I have been reading about, Low Dose Naltrexone [LDN]. It is a medication used for drug overdoses, addicts, etc. in high doses to help the addiction or jump start the heart from od’ing. In small doses [1.5mg – 5mg] it has been found to help the sxs of MS, Fibro, and other autoimmune disorders. It brings the endorphin levels back to normal which help the immune system to recover and do what it is supposed to do. It is not a cure, nor does it reverse the damage already done by these disorders. But, It has been found to slow or in some cases stop the progression of the disease.

I printed out all the info I found and gave it to my Neuro. It is not widely used in the US as of yet. He is going to do some research into this, contact a highly regarded pharmacy, and hopefully get me started on it at a low dose to see if it helps me in any way. Since our insurance has changed [shitty blue cross] and we have to pay almost 3500.00 out of pocket until full coverage, we have to be careful what I try. He offered me a clinical trial for Tysabri, but that medication still is not my drug of choice. And the side effects scare the crap out of me. So, we will see what we can do about the LDN and take it from there.

I do not expect any miracles…but it could happen!

Thanks to Kathy for the heads up on this medication [LDN].

Blessing and Hope!

Health · Ramblings · Sarcasm

When you fall, remember to get back up…

So, yesterday took a bit of a fall. Luckily it was on the way back from the potty or it might have been really bad. [if you get my meaning] 😛 I just kind of tilted a bit with my walker. Knew i was going down so prepared for it. As I landed on my bum I fell back and brushed my head down the entertainment center in our room. Didn’t hit it hard, just kind of slid down it. Did it hurt? Not so much, but my bum is sore! lol And when I fell I kind of tightened my body so a bit sore today. No real tears, but a bit of a giggle thinking I need video of these falls. I would so win America’s funniest home video shows! lol My neck got the worst of it from snapping back. Thank God for muscle relaxants!

The hardest art is getting up. Took me around 15 minutes. I had to crawl to a low spot to get my bum on something to be able to get up and grab my walker. So, here I am crawling while pushing my walker ahead of me. Then, slide on to the bathtub side and find the strength to get up and grab my walker. I am very ‘talkative’ while doing this. Cussing, telling the MS it will not break me. Telling it that I will get up and when I do to look out. My 3 dogs didn’t help the matter as they were worried and all over me as I was doing this. I was thinking I could wait for the kids to get home, then realized it would be about a 4 hour wait. So not sitting on the floor for 4 hours! lol

I finally got back to my bed and promptly fell asleep. The kids got home, made me something to eat and then fell asleep again. Logged on to blog talk radio for She Speaks to Inspire and fell asleep. I could not stay awake for anything. I get a bit scared when I feel like this. Afraid one day I may fall and not be able to get back up. It gets me thinking I should only use my wheel-chariot. But, I cannot do that. I will walk, even if it is only a few feet with a walker until I am no longer able to. Stubborn, yes I am and that is what keeps me going when I want to give up and throw in the towel.

I will never give in, nor will I give up.

Blessings and hope!


I’ve Fallen and I Can’t Get Up…

So what do you do when you fall, can’t get up, and your only kid home has headphones on with loud music? And you’re not near the phone as a diff kid borrowed it and left it somewhere else. [why you got up in the first place to find the ringing phone] Well, welcome to my world!! rofl

I finally crawled to my chair and after about 5 minutes got in. Then rolled to my son and let him have the new rule…NO MORE HEADPHONES WHILE IN THE HOUSE!! He was mortified and felt awful. I was in tears and half laughing as whenever I fall I get that  “I’ve fallen and I can’t get up” commercial in my head.

I really think I need video on all the time as sometimes it is quite comical when I fall. The best is the crawl to find somewhere to try and get up on to get in my chair.

I no longer shower alone as I would be horrified if I fell and had to call for help. I want no paramedics seeing my wobbly bits all over the place. lol This is the reason for our [eventual] bathroom and doorway remodel.

My bathroom design [copied from my blog at fab40]

So, this is one of those ‘it could happen’ blogs.

As some of you know, for me to shower is a huge chore. Someone has to be home to help me in and out of the shower. Now mind you there is only about a 3 inch step over, but to me it’s a foot high. And the glass shower doors make it hard to maneuver into my shower chair. So, someone has to lift up my leg to get it over the 3 inch rise. And getting out… we will not even go there as that is a comical scene!! lol

Well, when we went to Carlsbad my parents set the hubz and I up in a hotel with a handicapped room. The shower are was the bomb!! The bathroom was basically one big shower. The floor sloped a bit so water ran into the shower area. There was a built in chair that was high enough for me to get on and off by myself. OMG, I was in hog heaven.

So, I have designed my lil shower area for me.

Right now the area contains the potty and the walk in shower stall. I can purchase a shower/tub for handicapped persons, but then Rog would not get the nice stand up showering he likes. And the one I like is in the 6000 dollar range. But, if you want the best, get the best!

So, my alternate idea…

We will gut the area, paint with moisture wear paint, then tile the whole area with a slight slope to the drain already there. During the tiling we will add handicapped bars which will enable me easy access to get up and down. We will also be adding a teak built in fold up and down chair for me.

Now, right now we are broke thanks to having to fix the broken AC. But, I am going to talk to a contractor I met at Lowe’s and get some pricing. The gutting and painting part we can do ourselves to save some money, but the rest we will need some help. Rog could do it, but he really does quite enough around here.

This is really exciting for me even though it is still a ‘it could happen’ idea. Aw hell, it’s a ‘it will happen’ idea.

It will be so cool to be able to shower all by myself and have one thing I am able to do alone!! You have no idea!! tongue out

Blessings and Peace!