Friday, March 07, 2008

SS - The Experiment of My Life

The last seventeen years has felt like one big experiment on how to beat an illness. In the beginning you don't mind the needles, machines and doctors because you want answers. When you get that answer you read everything you can, scaring yourself into trying anything once.

My research was so detailed that I challenged my diagnosis of MS with four top doctors and four years of my life. Sadly I got my diagnosis changed but it was not better news. I was sent to UCSF and saw a doctor that started one of the first ALS clinics on the west coast. They have organizations for the patient support but this was different. These were researchers that focused mainly on the disease because time is not a luxury for most ALS patients. They seemed numb to death since most patients live for only 3-5 years and they had lost many patients during drug trials. They needed ambulatory patients for experimental drugs. I was still walking so before I knew it I was signed up for a blind 2yr clinical drug trial.

I drove 2 hours each way for questionnaires, blood work, respiratory tests and a full exam once a month for 2yrs. I was given a months supply of vials and needles for two injections a day. There was a placebo and two different dosages given but I was not allowed to know what I had. I knew I was getting the drug the minute the side effects started. The first month was the worst but after two years it became easier. In the end the drug was not approved by the FDA so they wanted to start a new trial. They wanted to inject the drug directly into my brain once a month but I'd need a hole drilled into my skull first. I kindly declined that trial with a wait and see attitude.

The next experiment I agreed to was a series of electric shocks on certain muscles. They took me down into a dark basement at UCSF into this tiny room. It looked like a Frankenstien movie set. I had tears rolling down the sides of my face for two hours before they were done. It hurt like hell and I did not return. I felt bad because this was not just for me but for all ALS patients. I did offer my body to them after I died but they said they would only want my brain and my family would have to pay extra for removal and shipping!

I eventually found a site called Patientslikeme and it has ALS patients that share with other patients on what has made their lives better. Some are doing stem cell procedures in other countries and others have found various drugs and supplements that have made life easier. We chart our progression and what we are on, while debating and asking questions in a forum. Most doctors don't know about most of this stuff unless they are working at an ALS clinic. Some of the patient support clinics are dropping the ball and are acting more like a hospice. Support should go hand in hand with hope. I got the hell out of that scenario!

My experimental life has taught me to listen to my body, listen to those who have been there and be open to a cure. I use water workouts, drugs only at night and get my 9 hours sleep. My friend Bonnie wants me to try a metal detox program which I'm going to try. ALS is a gene triggered by chemicals so it's worth a shot. ALS is not a death sentence with today's technology but living with this technology is a personal choice.

I still have not accepted my ALS diagnosis after 17 years because I'm still here, breathing on my own. I am still fighting for a cure and a truth. I'll never stop searching while I continue to stay one step ahead with eyes forward.

34 comments:

Lucy said...

thank god for 'Patientslikeme'. It sounds like a wonderful way to explore other options and connect with real people instead of doctors who are desensitized to what you're experiencing. Your kick ass attitude is extremely admirable and inspiring Tam. You rock baby! Don't ever stop fighting! ♥

tumblewords said...

Your strength and attitude are admirable! I'm always amazed to find so many people battling long term illnesses without losing hope - people who keep on keepin' on without a whine or pout. Then someone reminds me I am one and then I understand - oh, yes, there's no stopping...

melody is slurping life said...

You shine brighter than any star...lighting the way for so many. Keep doing it your way.

tinker said...

Tammy, your strength of spirit and courage, every day through all of the years that you have battled onward, are just awe-inspiring. You are a Warrior Woman!!! Keep on fighting the good fight, my friend. We are all cheering you on! Many, many (((hugs))) and much love to you, today and everyday~XOXOXO

Tabor said...

Your strength and attitude have probably provided endless help to those with this disease. I love the way the Internet empowers groups of laypeople to do their own research on challenges they face. Doctors are good (usually), but they have only so much time in a day.

Greyscale Territory said...

What an inspiring post! Your fighting spirit even keeps your frustration down.

You are an incredible woman!

Keep posting your journey.

Smiles and Light

Remiman said...

Tammy,
You are the example, the path that gives hope to any and all who are faced with seemingly insurmountable odds. Your experiment is already a success and a catalyst for further experimentation. Love ya.
rel

pepektheassassin said...

YES!

AnnieElf said...

Interesting reading, Tammy. Your matter of fact acceptance of the problem and quest for answers and strong spirit is a lesson for us all.

emmapeelDallas said...

You truly are a warrior, Tammy! Terrific post!

Judi

Becca said...

Once again, you amaze and inspire me with your fighting spirit. If ever I doubted that sheer determination could make a difference in fighting a disease, you are the proof positive!

You go girl!!

(Weirdest thing...my husband is in the dining room on his computer which is playing "Everything I Own" by Bread, same as your blog's song! We were big Bread fans back in the day, and he has all their songs on his computer :)

Becca said...

Once again, you amaze and inspire me with your fighting spirit. If ever I doubted that sheer determination could make a difference in fighting a disease, you are the proof positive!

You go girl!!

(Weirdest thing...my husband is in the dining room on his computer which is playing "Everything I Own" by Bread, same as your blog's song! We were big Bread fans back in the day, and he has all their songs on his computer :)

Devil Mood said...

That's what I call extreme experimenting. I'm in awe of you and your attitude. I wish I could fast forward medical progress somehow. Probably by keeping a positive outlook that might just happen. Good luck, Tammy!

myrtle beached whale said...

You are so much stronger than I could ever be. Thanks for sharing with us.

Chris said...

I can't imagine going through all of those 'trials' but I can't blame you either, knowing the next one might be THE ONE. After all, for every disease that now has a cure, SOMEONE was the first to be cured. Nicely written!

paisley said...

reading you blog makes me wonder who i think i am ... i can be such a morbid miserable persona at times... i think i need to make it a point to come here and force myself to look at what a will to live really is every day... thank you for this reality check....

Nancy said...

Tamela, my sweet friend,

I had mixed emotions reading this. A bit sad, a bit angry and a whole lot proud to call you my friend.

I love you,
Nance

Inland Empire Girl said...

I love that you took charge of your own illness and researched and found a support group online. Your perserverance and courage is such an inspiration. This is a perfect post for the topic.

Tara Dawn said...

Sweet Tammy, I have missed you so much. I come back here and find your words still so full of hope and optimism...you are truly an inspiration to so many, including myself of course. I am sending many well wishes your way and lots of loving thoughts. Your place in my heart is constant.
xoxo,
taradawn

chiefbiscuit said...

Thanks for sharing all that - I find your fight inspiring, if that's okay with you. I love your attitude. You have such spirit - it shines through in the photos. I sense you aren't comfortable with these descriptions - and they could be seen as condescending - but believe me, I am in awe of your strength Tammy.

gautami tripathy said...

I admire your spirit. Your positive views. Your posts are so full of wisdom.

Refluxing Life

GreenishLady said...

I just love your fighting spirit! And your willingness to enter the experimental trials - and your willingness to pull out when they proved not good for you. Others have said it, but I'm going to say it again - you are truly an inspiration. Love you!

Amarettogirl said...

This was heartwarming, sad, personal and triumphant story of not only surviving but of thriving as well! Keep your sense of self and continue to live. I agree with you - our technilogical advances lack heart, too often these tests are cold, painful, sterile and heartless. Continue to be, you are the heart, nurture yourself.

Star said...

I'm so glad you're proactive, Tammy. It seems like ages since I've checked in here...good to catch up with you a little.

Sending HUGS and the hope of spring (soon!)

paris parfait said...

My beautiful, brave, inspirational warrior friend - you are amazing and I am so privileged to know you. No doubt your struggles have helped many others who are facing the challenges of ALS. You are my hero! xoxox

Shyam said...

What an amazing person you are!

khambagirl said...

Hello Friend! I am so honored to be your friend. As we fight these medical battles together, I am humbled by your strength of character, inspiration, and depth of your beauty. Looking towards the victory!

Bonnie
yakattack.typepad.com

Crafty Green Poet said...

Very inspiring post, thanks for sharing

UL said...

Such a warrior you are Tammy, you inspire me....I wish you the very best and I know you win every day...

LittleWing said...

this is one of the reasons why blogs are so powerful across the wires... yes, you are truly have a strong spirit.. full of hope and strength.. i wonder if you know how many people you have touched in a day.. in a lifetime of living... may you always continue to fight the fight and live your beautiful life full of love and inspiration for all of us... amen

J. Patrick Leer said...

Tammy, you never cease to amaze me as an excellent and brave advocate of patient empowerment!

Caregivingly Yours, Patrick
http://journals.aol.com/daddyleer/CaregivinglyYours/
http://lairofcachalot.blogspot.com/

kate said...

Tammy, what an incredible inspiration you are! I am so glad that you have the fighting spirit in you to keep going and finding out what works for you.

Talk about strength of character. You have it in spades!!

Just Jen said...

You got what its like to get the diagnoses right on. I went thru that with my boys but I would not submit the boys to the 'test' treatments. i'm surprised that alone didnt kill you. You are definitely a fighter in every sense of the word! Whether its ALS or something nobody has ever heard of, you can say you've beaten the odds no matter what you have, just from the testing alone. You are truly inspirational!

Sherry ~ Cherie ~ ms. herbes de provence said...

Your warrior spirit moves me deeply. As one who has been given a diagnosis of a potentially terminal illness (I'm an almost 3 year breast cancer survivor) I applaud your strength and your generosity. Yes, you seek answers for yourself, but at the same time, you are helping others.

When I agreed to my first clinical trial I said I was doing it for those coming up behind me, as those did who went before me. And the nurse and the doctor both said, "don't forget, this will quite possibly be of a huge benefit to you as well."

We sometimes forget to see the forest for the trees.

Thank you for inspiring me.