Insanity vs. Inanity

This is just ludicrous. I didn’t even realize the amount of stuff I was polluting my body with. I worked so hard to remain as objective as possible through–everything–that I stopped caring about being poked and prodded and just started to think of my body as a (broken) machine and was a compliant patient. Through it all. Now I find myself no longer beholden to Big Pharma. For now; the truth is, at the moment, there is nothing to modify the natural course of this disease. My disease. Realistically, I will likely need to resume treatment. But not tomorrow… Insanity meets inanity in this post!

 

I would like for all to know that while my information is accurate, I am in no way a medical professional. Further, MS as it was just covered is specific to me—we all have our own unique biochemical footprint.

My name is Andrew Durso, I am 30 years old. In 2007, I was diagnosed with a chronic, lifelong illness—Multiple Sclerosis (MS). I was counseled by my Neurologist to choose between 4 medications— Copaxone, Rebif, Avonex, and Betaseron (the only available first-options at the time, known as the C.R.A.B. drugs). What did I know of such things? My decision was thus based entirely on the method of administration and my relative comfort level with injecting myself. Thus, my options became: a subcutaneous injection (known as ‘SQ’, frequently referred to as ‘Sub-Q’, or under the skin) every day (Copaxone), a different Sub-Q injection 3 times a week,  an intramuscular (IM) injection once a week (Avonex), or a a subcutaneous (SQ) injection every other day (Betaseron).

I settled on Rebif. My disease progressed quickly. Within 8 months of my diagnosis, I was confined to a wheelchair. Six treatments and two surgeries later, the most incredible thing happened to me.

As of March 1, 2013, I have not consumed a single pharmaceutical product. I have instead been medicating exclusively with Medical Cannabis. I purchased a battery operated, portable vaporizer to facilitate consumption. I asked for and received a medical exemption to purchase, carry, and possess marijuana.

Please understand–I have a great job. I have an amazing family. I thought my days with pot were behind me. But this is no longer high school. It is a FACT that I am enjoying good health right now. Understand: I don’t want to get high. I’m sick and need to medicate.

I now consume Medical Cannabis for all that stuff that I was taking those 20 pills a day for. And, for me, it works.

 

 

Medcation History:

Prescribed:

-Baclofen – 10 mg tablrets 4 times daily (to control spasms, medical cannabis achieves the same effect)

-=Clonazepamn – 0.5mg pill 2 times daily (for tremor control – medical cannabis achieves the same effect)

Detrol L.A. – 4 mg capsule 2 times daily (to calm my overactive bladder muscles – medical cannabis achieves the same effect)

Treatments:

Rebif – 44mcg injected 3 times weekly (interferon 1a)

Tysabri – infused in a infusion centre. Dosage is based on weight, every 4 weeks

Mitoxantrone – chemotherapy1 agent used primarily to treat leukemia, 1.5L infused at hospital every 4 weeks.

Cyclophosphamide – chemotherapy1 agent used to treat various Cancers, 1.25 infused every 4 weeks for 3 years with future regimen of ever 8 weeks.

-Current intent is to resume Tysabri.

Surgeries:

-CCSVI venoplasty

-Open brain surgery and installation of Neurostimulator for tremor control

Over-the-counter (OTC):

3.1,000 IU Vitamin D twice daily

4.350 mg of Calcium Citrate or 500 mg of Calcium Carbonate twice daily

7.1 horse-pill sized multivitamin

8.Omega-3-6-9 capsules (containing 400 mg of EPA and 200 mg of DHA thrice daily

 

1                   Chemotherapy always indicated or use with steroids (1L of Solu-Medrol delivered via infusion and unknown quantity of Zofran (anti-nausea drug delivered via infusion.

Andrew Durso
Vice President
Tristan Williams MS Foundation (TWMSF)

Resources:

Neurology-2003-Goodin-1, obtained from http://www.neurology.org/content/61/10/1332.full.pdf‎
MS Society of Canada_ available at http://www.mssoiety.ca

 

 

 

 

 

 

 

 

What ‘intolerance to heat’ means

I’m going to take a step away from being a shiny ball of happy for just a moment (it actually hurts me to think that I’m going to offend people in doing so). I’m gonna do it anyway and if I’m incorrect in any of the assertions I make, I honestly mean it when I say ‘I’m sorry’ in advance.

If one more person tells me that heat & humidity affects them ‘the same way’ as it affects me, I might just lose it (the idea, people, is that this blog post will act as my catharsis for the repeated twinge of frustration I’ve been experiencing of late). It bothers me when people say ‘they know’ or that ‘they feel the same’ when dealing with hot & humid conditions. It bothers me because I’m fairly certain that most people have either no or quite possibly less than no idea what I mean when I make reference to my intolerance of heat and humidity.

A good friend of mine once referred to my disorder as ‘the snowflake disease’. He’s kind of right; while from one case to the next there are similarities, like snowflakes, no two cases are exactly the same (another big-fat-middle -finger from life…). This can be explained simply – no two immune systems are exactly the same. And that’s just it – people need to understand the difference between things that are ‘similar’ and things that are the ‘same’

Your own personal intolerance to sticky, hot conditions, while almost certainly unpleasant, is not the ‘same’ as it is for me. There is truth to the fact that everyone’s nerves conduct less efficiently in the aforementioned conditions. There is truth that there are other things that can cause intolerance that I will never understand. Feel free to create your own blog to bitch about it. This one’s mine.

Next time I’m bitching about heat, humidity, or the like, word your response carefully. Sure, it might suck for you too. I’m not trying to devalue or discount how others are feeling, but am instead trying to enhance your understanding of mine. Yes, I feel for others too. But when it’s hot, do you have problems standing long enough to pull up your pants after taking a leak? Does your eyesight go from 20/20 to 12/20? Are you unable to lift the fork from your plate to your mouth and forced instead to eat with your hands as they waver back and forth uncontrollably?

Perhaps you have difficulty dealing with hot & humid. Perhaps your difficulty is greater than mine. But I somehow doubt you’re the ‘same’ as me.

-A.D.