Sunday, October 02, 2011

Am I OK?: Four Years of Disabling Illness and Counting

I have not seen anything from you on your blog in a while. You mentioned you had health problems. I hope you are well and that I will see more of your work in the future.

Thanks for inquiring,

Unfortunately, I have been in very poor and worsening health for the past 4 years, there is no end in sight and I have had to accept the fact that I am disabled. There are times when I am able to compose and write, but it is for short periods of the day on good days. Good days come and go by seeming whim, while exertion is rewarded with a month or more of deep disability. I have some hope to eventually be awarded my due disability benefits, and make what progress that can be made.

The only project I can keep going through this so far is the calendar, since I have enough time that I usually have enough good days to finish it at least before the year starts. There is much more that I really want to be able to do.

My recall is very poor when my energy is low, so when I have a bad period I usually can't recall very much of I was doing before. This has lead to times when I think of a new angle of research and only when I go to save my notes days later do I find that there already is a document named the same containing similar notes from a year or more ago. It is frustrating to say the least. I am trying to work out new strategies, when I remember to do so. Everything takes more time, and invokes layers of second guessing. I edit and rewrite something like this for days, for example, because I will post it.

The overall effect on me was summed up well by a cousin who hadn't seen me for years. She quipped, "When do you turn 60?" I replied, "You already missed it." I was 40 when this hit.

Thanks again. I share your kind hope that you will see more work from me. I'd like nothing more.


Angel said...

Fr. I cannot find any place you have specified what your worsening illness is but wanted to throw out a rope to you for real help if that condition happens to be fibromyalgia. You stated that with exertion comes a sort of crash in any physical or mental ability. This sounds like(at least superficially to me) like chronic fatigue and/or fibromyalgia. It's not common in men but it's not as rare as it used to be.

Then again what you're hinting at could be completely different and simply a symptom of something else entirely. I don't mean to pry but I really do want to assist if you are indeed talking about fibromyalgia.

I have it for over three years now and found relief. I can help you get the information you need to find the same relief. I want to help. Reach out and contact me if you would like to chat more.

Experiencing such profound chronic pain and memory distortion hurts the soul, not just the body. I've been there and I know.

Gentle Hug,


Anonymous said...

Hello Troy,
Sorry not to have been in touch, I closed my facebook account for a number of reasons. I'm sorry to hear that you are still struggling with health problems, if I can help in anyway, please do not hesitate to ask.
Angie, L.

Fr. Troy Pierce said...

Angel, It doesn't seem to be fibromyalgia in my case. Though I thought my sister might have what I have but has fibromyalgia instead. If you would send what you can and I'll forward it to her.

Angela, Thanks. Keep in touch.

Anonymous said...

eWithout meaning to be a creep Troy I have been going back over to have a look at The Gnosis Institute a lot over the last few days.
Since I had a considerable break from the Institute and have left one church for another and have explored my native Celtic tradition. I realise how little I appreciated what you were doing, and I wanted to tell you that you and your work has helped me considerably. I have been reccomending you as a valuable resource to others. But thank you for what you have given me and for your dedication to others. You are truly inspiring.
Angela L

Angel said...

Have a limited number of characters I can use in a post so I have to break this up. Sorry!!

This is Dr. St. Amand's website listed above. Information about his book "What Your Doctor May Not Tell You About Fibromyalgia" (check it out on Amazon: listed as well as a way to follow his protocol without even purchasing the book. Amazing amount of work went into this and I guarantee you that Big Pharma would love to see this man dead. It's only a matter of time before it all hits the fan.

The efficacy stats for the most commonly prescribed fibromyalgia meds are horrendous. 45-50% for Lyrica and Cymbalta and Savella has a whopping 30%!!! It's disgusting. I've tried all these meds and various combinations with others. They only made me worse. I've had docs shove tranquilizers at me and walked out in tears because they threw their hands up in the air, saying that they didn't know of anything else that helped. But they didn't know about the guaifenesin protocol.

All the links on the left-hand side of the Doc's page are vital to a fibromyalgic to understanding exactly what their body is up to and how drastically different Dr. St. Amand's approach is to this illness. He doesn't shove what I call 'band aid' drugs at the patient. He works to reverse the illness and the damage done to the body itself. It's no bandaid that Big Pharma gets a kickback from. This is real science.

Angel said...

I still take a few complementary meds to ease me through some bad patches but I am NOWHERE near as debilitated as I was two years ago. I actually feel like I have a life again.

The man has been researching fibromyalgia for over thirty years. He first noticed a strange correlation between his gout patients(he's still a practicing MD) and some weird divergent subsection of these "gout" patients who reacted differently to the uricosuric medications.

If your sister is debilitated with fibromyalgia or feels like she is going out of her mind with all the unanswered questions, please pass along this information to her!!!

Dr. St. Amand saved my life. I was bedridden and now I can take care of my two stepsons and a household pretty much by myself after two years of treatment. And guess what? The treatment is OVER THE COUNTER meds you can buy at any pharmacy area! You have to watch what you come into contact with, though, or you'll negate the meds.

It is not a journey for the faint of heart. It is difficult. But if I hadn't stuck with the protocol(after falling off the wagon fifty times) I wouldn't even be alive right now. I couldn't live in that kind of physical agony and mental fog.

The forums are currently down on the site due to tech issues but definitely have your sister read what is available on the site. A treasure trove!!!! I didn't have the cash to cough up for the book at the time I tripped across the information and found it as an audio book at my library online. I couldn't read very well back then, either. The fog was killing my ability to understand anything written.

There is research which as been done on the guaifenesin protocol and the 2010 City of Hope study in Duarte, California results are published on the site. Actually, there are TWO studies which were done and the results are astounding. Did you know that we can now pinpoint with 80% and higher accuracy exactly which people have or will have fibromyalgia through a genetic blood test?

You say your sister has fibro, Fr, but how positive are you that you don't as well? Have you had the pressure point test?

There is a slightly masochistic way to know for sure without visiting your doc if you're interested. It's 100% safe but it's a hell of a way to find out the truth. If you even have a few of the fibro symptoms then it's worth it to you to try the test. (Fibro gets worse and worse as time passes so if you have only a few symptoms now just imagine what you'll be like in ten years and then double it. That is truly how bad it can get.) You can do it on your own and all it takes is the same OTC med the doc uses in the protocol and at least five days.

Sorry for the lengthy reply but I wanted to cram in as much info as possible.


Angel said...

More about diagnosis: I had to rule out a rare genetic disorder so that we could settle on fibromyalgia being the root cause.

An $11,000 test, I kid you not. There's only one lab in the country who does this type of test. My mother has that disorder PLUS fibromyalgia, how's that for cruel? On the other hand, because of this nerve disorder she doesn't feel pain the way I do and this has led to some really hurtful conversations about 'ability' and 'sucking it up and just doing stuff'

Saying 'no' to people when they ask you to do things that you're not able to is a hard thing to learn.

My mom's nerve receptors are fried and mine are oversensitive. Talk about your oxymoron.

Fr. Troy Pierce said...

Thanks, Angela, I wish I could do more.

Anonymous said...

Hi Troy, I hope you are ok. I am following The Gnostic path online but as part of my spiritual discipline I have deactivated my facebook account again in order to get my priorities in order. ie, meditation and so on. I may possibly go back on Facebook infrequently just to catch up but do not want to share too much personal information online at the moment. I am an avid fan of Stephan Hoeller and have jsut watched the latest Lenten homily, and it all fits very well with my experiences. Thanks to all!