Say It Isn't So

Thursday, July 27, 2017

Yeah baby

It's good. I'm finally coming to my senses. A cooking splatter leaped from the frying pan to my right forearm. Pain! Whoever thought that sensation would bring me joy! So I'm down to just a little numb and tingly. Everything otherwise is working correctly. Still actively inclined.

Tuesday, July 11, 2017

I woke up the other morning with the pins and needles sensation running through my entire right side. It was concerning, but I was able to rule out stroke right away. This happened before, 15 years ago. At the time it was one of the episodes that led to my diagnosis, along with a couple of episodes of sudden blindness in one eye. So I have been here before, but I don't remember how strange it felt. Like the dentist has shot up my right side with novocain. Walking is weird. My leg feels like a wooden stump. Going up the stairs is the usual easy; Coming down the stairs and I swear I even hear a thump. Spooky to say the least. The only thing giving me difficulty is picking up small things like pieces of paper with the fingers on my right hand. I cannot feel them. My toes still wiggle. My motor controls are functioning as normal. Prior to this, I had been bitten by several mosquitoes and fell ill with a mild flu. Also, I had been stressing about something, and I think that was the trigger. The stress is now gone, because this event has made my decision for me. I know this will fade away.
Now would be a good time to pinch me.

I write this, just for documentation.

Monday, July 04, 2016

The 4th of July - Independence Day

It was the best of times. It was the worst of times. It is our time, and we should celebrate the fact that we do our best to live in a democracy, where it is the people, not the elite few, who make the decisions that govern our country. We must always scrutinize and sometimes right our course. Play today, if you will, but be absolutely diligent tomorrow.

Friday, June 03, 2016

I have not been to my blog in a long while. There are other spaces on the internet that occupy much of my time. Here though, I can say things with relative immunity. That is not just that my relatives are not aware of my blog, but that there is so much preoccupation with the bits, bites and bots in the other place that I feel it is safer to talk of my condition here. It is in fact, the reason I created this blog in the first place.

It has been 15 years since my first encounter with the trail of terror that became the diagnosis of MS. In looking back, I think the diagnosis was more devastating than the actual condition is. I do not wish to say that the condition doesn't cause great difficulty to many, for I know that it does, but I want to relay that it is not so difficult to many of us.

My neurologist had told me to research the internet and see the treatments available and to pick one. That brought me here to 'blogland' among other places. I found people here who were undergoing various treatments and having varying results. It seemed to me that many of them were sickened by their treatments. Depression was pretty evident among them. I found something that interested me because it had a 66 percent efficacy. I did not feel that being ill all the time was worth a 1 in 3 chance that it MAY slow down the progression of my condition. Plus this preferred treatment of mine was a once a month infusion, not a daily ritual. I told my neurologist about it. The good doctor had never heard of it but would look into it. Hah, who did the legwork there? Anyway I got a call about a week later saying they would set this treatment up for me. That same day Tysabri was removed from the Market because 3 people had died from PML. I was a little put out by the fact that my choice was no longer an option, and so I opted out of any treatments.

So 12 years later and I am still walking, talking and engaging in life. My immune system is overactive. I can't handle chemical scents like Febreze, static cling laundry detergents, or those cute little glade air fresheners. I may back away from you if there is something on your person that antogonizes my respiratory tract. There are places where I must leave the building due to toxins in the air. I have decided those things are poison and I am the uncaged canary to show the way.

There is pain in certain muscles that intensify then ease with a rhythm that I think I can correlate to activity and/or diet. I still do Tai Chi. It keeps my left side as able as my right side, and because there is a mind connection to ground that is emphasized in all the movements of Chi Kung, my balance is way better than it was 12 years ago and I can still pick up things with my toes. Well, some things, Socks, I can pick up socks and fling them at my cat.

I see that a version of the treatment that I was denied in the past is now available, despite the 'may cause PML which usually results in death' and it is being frequently advertised on major TV networks. This implies to me that more and more people are getting this devastating diagnosis. If you decide you need to fight this condition (my internist said it was now considered a disease, but I refuse to accept that, being of sclerated mind and body...because without the mind the body can't function, and my mind is pretty stubborn), if you decide to fight this condition with treatment, I wish you a safe and successful outcome. I want you to know that the best results are offered by a positive outlook on your future.

Namaste, Shalom, Peace be with you.

Monday, May 20, 2013


So, I haven't been here in quite a while. My browser wasn't compatible. Even though I am, as my mother used to say, stubborn as a mule, I changed it. As you can see it took a while.
All is well. That is to say, no change. Now I find myself wanting change, but not on the MS front. More like on the general all round moving on with my life front. I've been here 7 years and I guess I have the seven year itch. Feeling kind of stuck in a rut. At least I'm still capable of moving. After tying up a few matters of stuff and more stuff, I will be able to readjust my direction and blast on out of here. Like a RED BULL.

Friday, November 11, 2011


Once upon a time there was Mothra, convinced by mankind to leave it's home on Infant's Island to save humankind from the unrelenting attacks upon it by Godzilla. Mothra did not survive but died sheltering her eggs from the fiery breath of her reptilian opponent. These eggs went on to become known as mothballs.

Okay, total myth. Well, not even myth. More like Mouse gibberish.

The days of fall are getting colder and darker. A few days ago, as I was entering the basement from the garage on my way up to my apartment, the distinct odour of mothballs invaded my senses. This smell had not hit my nostrils in a very long time and it swept me right back to another time in my childhood where winter was a way of life 6 months of every year. The use of mothballs was a necessity for keeping your woolens from being eaten by moths over the summer storage season. I remember I was led to the discovery of these little white marbles by my own nose. Curious about that smell and hunting it down. I found a shoebox loaded with them in a clothes closet. I remember thinking they were so neat and fun and I started playing with them. Thankfully I don't remember thinking they were edible, but it is entirely possible that this encounter was not my first. It certainly was my first at getting caught playing with them. My Mom, bless her soul, made me part with my newfound treasure and impressed upon me the knowledge that I should not touch them. I have not done so since.

I wondered about my condition and this chemical pesticide. Of course, I wonder about all fumicides and my condition, but this particular one is on my mind as it's infusion of my olfactory nerves transported me to my childhood in a instant.

Saturday, April 09, 2011

I went to see my neurologist a couple of months ago. It had been a year and a half since my previous visit. There were really no new issues going on with me. I wanted to discuss my tingle sensations being excited by electrical storms. He said he'd never heard any one else report this. I asked if there had been any insight on whether MS was a disorder or a disease. To my dismay he said it was considered a disease. He then stated that it was thought to be caused by the Guillain-barre virus. Interesting to me that he never said that it was caused by but that it was thought to be caused by this virus. This can be the result of a case of Mononucleosis which is usually linked to the Epstein-Barr virus (EBV), but can also be caused by other organisms such as cytomegalovirus (CMV). I do not believe that I ever had the 'kissing disease' but I do recall spending a lot of time in the 6th grade at home sick. I thought it was bout after bout of tonsillitus though. He went on to check my functionality.

I showed off my tremendous skill at balance by standing on one foot for a longer length of time than he was comfortable with. When his hammer hit below my kneecap I nearly kicked him off his stool. I could see that he was not expecting such movement and was startled. To tell the truth so was I. He then went on in his very diplomatic way to let me know that he thought that I had chosen the correct course of action for me. I asked if there was any kind of statistical data collection for someone like me. That is for someone who refuses to take the treatments that are offered by the neurological professionals. He said, no, there wasn't. That is a giant shame in my opinion. The only statistics to do with MS are for persons who are taking certain immune suppressing drugs or persons who think they are taking those drugs but are getting placebos. What about me? A person who just wants to keep moving by keeping moving. God willing I will not let this thing suppress me. He said that being active is now recommended by the medical community.

So I am not a statistic, but he took copious notes while talking with me. I liked that he was talking with me and not at me. Perhaps I like my neurologist now more than I did before. I am not sure though why I am dismayed at this MS thing now being considered a disease and not a disorder. Perhaps it's because that virus thing is resistant to all we throw at it and therefore feels more hopeless.

There is no such thing as hopeless. There is only hope.

It's time to do the walk.

Be well