Tainted Kernel

Extending my opinion

2012-02-01T10:34:00.000-06:00

As this is the blog I've devoted to my Multiple Sclerosis, I've decided to take it upon myself to make mention of what a dumb ****ing idiot Newt Gingrich is. How he could ever hope to have presidential aspirations is beyond me, but his arrogant ass is somehow able to fool himself into thinking his record is clean enough to do so. Politics aside, there is one reason I will do everything in my power to make sure Gingrich does not get the republican nomination:Newt Gingrich left his second wife after she was diagnosed with Multiple Sclerosis (and he bailed on his first after she developed cancer). As a person with MS I take great offense to this. It shows that when the going gets tough, you bail. That right there is reason enough to keep you from the republican nomintation.Newt Gingrich bails when the going gets tough. My wife is more capable of running this country than you!

Corporate <3

2012-01-22T10:14:00.001-06:00

If you know me, you know I am not a big fan of corporations of their money grubbing tactics. Especially Global Corporations! Yet I realize they are sometimes a necessity.So I present to you the most important corporation in America! Biogen Idec (From my view, at least, as a MS sufferer)If it weren't for you, I don't know that we would have treatments for MS. And because of your development of drugs for MS, the growth of MS drugs is growing exponentially!First there was Avonex, along with came a whole slew of alternate options once it lost its orphan drug status. Avonex didn't work too well for me, so my neurologist put me on a different Biogen product, Tysabri, which I am still using to this day with great effect! It has effectively stopped the MS progression, which I gather from what I was told by aforementioned neurologist.Ah, Biogen. I know what you are after is the almighty dollar (and a slew of world currencies), and creating such a unique and new drug to combat MS is a good way to go, with your nearly $5B in operating revenue!

This is what scares me

2012-01-21T23:30:00.000-06:00

The uncertainty of MS

Click picture to link to page

Look at that page and tell me you wouldn't consider MS scary. Now, am I safe because of the Tysabri, which has PML risks?* Hopefully the Tysabri will prevent any further damage from MS, and I'm lucky to have been diagnosed and treating it so early. Thanks to my loving wife the MR tech!

And yes, in the Stratify study I was found to have the JC virus antibody, which means I have been previously exposed to the pathogen.***I'm past the mean average of treatment time where PML risk is highest, according to my neurologist, but that is no guarantee.**Yes, they offer(ed) testing for the drug which I am on to see what percentage of people using it have been exposed to the JC virus.Ahhhh, the life of insecurity in a very secure life.

I can see clearly now

2012-01-04T18:12:00.000-06:00

Today my family and I went to the optometrists. Shelby got a new pair of glasses and I got a new pair of glasses and I'm going to try contacts.

Infusion so good

2011-12-23T11:49:00.001-06:00

I forgot to post about it. I was back to my usual AIC nurse, Michele. And although she is a Packer's fan, she is the nicest one I know, and she is champ at getting me in one needle stick! Sweating hands and all...you want to see a physiological reaction to trypanophobia, come visit me on infusion day prior to injection!Not that everyone else there is bad, it's just that my veins run & hide due to the anxiety that sets in due to needles. I frickin' hate them! And I picked the wrong chronic disease for hating needles. Oh wait...I didn't have one iota of choice in the matter : /

TL: Xmas tree!

2011-11-28T13:21:00.001-06:00

x-post from MjNet.

From yesterdays infusion

2011-10-20T12:03:00.002-05:00

A needle in my right AC vein

But I have to give a big thank you to Jayne at the AIC, the brilliant woman waited until I was done with my treatment to take my BP, and it was...wait for it...137/71!!! My BP is within normal range! Frickin' brilliant Jayne! You will never know how much you've done for me!

Damn vampires!

2011-10-14T14:59:00.002-05:00

I thought the coast was clear for this appointment, but then my neurologist asked me about the Stratify study. Bahhh! Blood draw!!! At least it was for the furthering of Multiple Sclerosis research.Everything was nominal otherwise. He was, as expected, pleased with the effectiveness of the Tysabri (Natilzumab) treatment. Then he mentioned a pill called BG-12. A pill!!! It's only in phase III trials ATM, but its A PILL that shows progress! I can't wait for that to be available, as long as it is at least as effective as Tysabri.

The Neurologist...again

2011-10-12T12:41:00.003-05:00

I've got another appointment with my neurologist on Friday. I'm sure it'll be just another how ya doin'...ok? good! type appointments, with which I am fine. I'm not sure Ill not have much about which to talk, as usual. That seems to be what MS has taken from me most....my sociability *sigh*. That and I have a hard time remembering things. At least it's been somewhat forgiving!

Infushin masheen

2011-09-28T11:33:00.004-05:00

Just thought I'd share what the IV machines/poles that I have to see for ~two hours every four weeks.

The AIC can be a depressor

2011-09-22T14:04:00.001-05:00

I get infused every 28 days, which is fine. The real issue I have is being included with all the sick & elderly that are near death. I feel bad for them, but it is a near monthly reminder that death is coming for each and every one of us. Depressing!

Awww yeah

2011-09-20T10:21:00.002-05:00

The fight for a free Illinois is back on! State representative Lou Lang and former state's attorney Senator William Haine, you deserve a big thank you from the people of illinois!

Here is the text of the postcard which they want distributed:Dear Legislator:Seventeen states and the District of Columbiahave laws in place to allow seriously ill individualssuffering from debilitating illnesses to alleviatetheir symptoms through the use of medicalcannabis.Under Illinois law, however, patients withHIV/AIDS, cancer, or multiple sclerosis whouse medical cannabis are subject to arrestand possible jail time, even if their doctorsrecommend it. You can put an end to this cruelpractice by supporting the Compassionate Useof Medical Cannabis Pilot Program Act sponsoredby Rep. Lou Lang and former state’s attorney Sen.William Haine.

Beautiful, non-partisan, purely fact-based. How could you not support legalized medical cannabis for those of us suffering from one of the above mentioned diseases.
Edit: Holy crap, the blink tag still works in mozilla browsers! For those of you still unfortunate enough to still be using IE are not able to see the multiple sclerosis tag blinking. Use firefox!

Today is a historical day

2011-09-05T09:04:00.003-05:00

A historical day in my wife's and my life anyway. It marks the one year anniversary of Shelby and my decision to start leading a healthier life. One year ago today, the love of my life and myself decided to quit smoking! That means as-of today we are officially non-smokers! MFing woot!Good job Shelby! Good job myself! I knew we could become non-smokers as long as we had the proper motivator!
(Re-post from my site)

The invisible symptoms of MS

2011-09-04T11:02:00.001-05:00

Another one done!

2011-08-26T13:59:00.000-05:00

Had yet another infusion, as expected, yesterday at the hospital. Everything was fine, only one stick, food was good (had a gargantuan lunch: Pizza, Ham & Cheese sandwich, mac & cheese, soup and chocolate milk with a dessert of two cookies, big thanks Michele!), the only problem was after being stuck with needles two times in the past two weeks (this made it the third), I am still very freaked out by needles. You would think that by now I'd be used to them, but no, its still the usual course of veins are clearly apparent the night before, but when I wake up they are hiding. I know it will only hurt momentarily, but I just can't get past that initial anxiety. I fear I'll be using diazepam for the length of my treatment on Tysabri (or some other injectable medication).

I also recently heard the one oral option for MS treatment, Gilenya [Fingolimod], really tanks your immune system, and any sort of infection is easy to acquire. Scary, but so is PML

Oh drats!

2011-08-17T14:52:00.004-05:00

So I got a blood test yesterday at the request of my neurologist's office. Wasn't that bad..however...I had a physical with my GP today, which went pretty well overall. However, the blood test my neurologist gave me didn't give enough information for my GP's liking, so I will be going back for my second blood test this month : /

I still hate needles to this day!

Then I had an accident on my bike coming home from Jewel. Apparently, I had too much weight in my backback*, which threw me over the handlebars when I tried to ride. Other than a skinned shin, a battered hip and some sore ribs, I'm OK...I think. Here is a pic of my leg

* I had in my backpack:
2 gallons of milk
2 64 fl oz Apple Juice
1 64 fl oz CranGrape Juice
1 64 fl oz Cranberry Juice
(roughly 35 pounds...try it)

I also carried in a plastic Jewel bag:
1 64 fl oz Sunny D
1 59 fl oz Florida's Natural Orange Juice - Made with US oranges!

(Jewel is a grocery store, for those who aren't familiar with Greater Chicagoland)

Infusion day

2011-07-28T09:21:00.001-05:00

And I'm up early (thanks to Zie) - Pre-infusion post, who would've thought? Hopefully I can take a nap...which is dependent on an easy needle stick. Although I don't really feel too good about spending my 2 honestly free hours per month sleeping...then again spending those hours connected to an IV isn't ideal either. C'mon luck/skill of the AIC nurse! I'm hoping this is a good day to be stuck!

What TK is for (and for what it is not)

2011-07-22T13:20:00.000-05:00

Tainted Kernel is for:
Me to have a place to log my experiences dealing with the disease that affects me: multiple sclerosis

Tainted Kernel is NOT for:
Advertisers to place advertisements to their webpages or products.

Are we clear on that fact? This site, along with all of my MjNet sites, is not for promoting your product!

Having MS is $$$$$

2011-07-14T15:24:00.000-05:00

If you want to treat it with an outrageously priced medication. I had two trips this month, and my standing balance with the hospital is...wait for it...an astounding $15,2xx.xx! FFS, its costing me (or my insurer) over $7500 everytime I set foot in that hospital!

At least it makes me a little warm inside to know that my insurance is mostly covering the cost of disease. They make it possible for me to continue leading a normal life. For that, I thank blue cross/shield. Sorry the drug companies are being so greedy!

Another thought...I wonder how much it is costing the hospital to print all these bills they must be sending out? It must be astronomical!
Not to mention the cost in trees.

Another 28 days

2011-06-30T15:34:00.000-05:00

Another infusion down. Michelle* got me with an easy single stick. Thank you Michelle!

I have my physical in the middle of August. All is going well.

I spell Michelle as Michelle, unless I am told otherwise by that person.

No correlation between stress and MS

2011-06-16T11:05:00.001-05:00

Well with another theory blown out the window by the NMSS (and in which I did not hold much hope), we progress further down the MS hole. Will there be a finding of a cure or cause in my lifetime.

With big pharma raking billions of $s in profits for making a treatment, I don't think it'll happen.

Day two

2011-06-15T11:34:00.000-05:00

So my doctor (neurologist) put me on a new medication to help control my fading memory problem after I talked to him on Monday. I'm not saying which drug it is, just to be clear on that fact, but it is 10mg /day, which was awesome, it really really picked my energy up for about six hours. Didn't have any nasty crash, but I was up until about 330 this morning! Today I'm going to break it in two, and take 5mg in between coffees, and then again at two. Hopefully that'll be a bit more leveled out instead of the intense surge that was yesterday. And we'll see how I go to sleep, if I have trouble going to sleep, ingestion will have to come much earlier in the day.

Big thanks to Service One

2011-06-07T14:30:00.001-05:00

Thanks to Sandy, Gord and Service One for their gracious donation to my Walk MS page. You've made my goal!

Thanks Service One!

Its been a long time

2011-06-04T15:56:00.000-05:00

Since I've had multiple sticks. Yesterday's infustion was a horror show. Four total sticks, finally went in the AC : ( Look

In the wrist:

In the left hand:

In the right hand:

And finally, in the right ac

O Canada

2011-05-27T11:12:00.000-05:00

Thank you for supporting World MS day!

And thanks to Niagara Falls USA for the pic!