It Went Down Just Like This

I promised you with an update about *something* in my last post. I had my doctor giving so many of my crazy symptoms a name. And some promise for understanding some of my other more painful symptoms. It is like the jigsaw coming together. And I told you I had a purpose for that day. BTW, that felt really good, and reminded me that we need a purpose every day... no matter how large or small.

First of all, I know the medical speak can get confusing. And I don't want to explain something to anyone who is going to say, "Well duh." But I don't want to not explain and leave someone scratching their head, either.

So, I am going to go with the easiest possible terminology whenever possible and over explain. For those of you who have no contact with autoimmune issues. It means it is the body attacking the body. That simple and that complicated. For whatever reason, the antibodies in the body decide that specific tissue, organs, etc. are the "enemy," even though they are not, and launch an assault. You are literally being attacked from within. Not without. And, from my limited experience with this... I have a few of these suckers... the doctors have no real clue what they can do other than band-aid. They have yet to find any "cure." Do I think there is a cure? Yes. When Eastern meets Western medicine and works together, they will find a cure. Until then, not so much. (Thanks to all who have sent me ideas to check out. I am open to alternatives!)

The other thing about autoimmune diseases... if you are diagnosed with one... Be prepared. Slowly but surely, various systems start to turn. It often doesn't happen all at once. But it is the RARE individual who only has one autoimmune issue.

Last, in any health situation stress makes everything worse. For autoimmune cases, I think that stress might be the trigger that fires the gun that turns a specific set of antibodies against you. My theory.

I believe I wrote a blog about The Pain Circle I was in with my migraines back in 2006. That was when I Fell Through The Floor. I really hadn't been able to work in the better part of a year. I had been suffering with a daily migraine since 2003. I was existing on painkillers. But I financially hit the wall in 2006. That was just about the same time that my doctor eliminated everything else EXCEPT an adrenal problem.

I did this saliva test that is way more reliable than a blood test over a 24 hour period of time to measure the cortisol that my adrenal gland was producing. It also measured all of my other hormones. Basically, my adrenal gland was shot and unable to produce much of any cortisol. However, I had this horrendous migraine all of the time. You must understand this: all pain triggers a fight or flight response. The brain immediately sends a message to the adrenal gland for cortisol that IT CANNOT IGNORE even though it has nothing to give. So, it goes to the only source it has: the other hormones. It borrows from them and turns them into cortisol, fulfilling the brain's request for cortisol, but creating an imbalance. That imbalance only made my migraine WORSE. Pain triggers a fight or flight response... And that is THE PAIN CIRCLE. I had been living in that for three years by the time we figured it out.

I sold my house, quit my job, moved out of state to live with my parents, started a vitamin program, also started a 3 month internal hydro cortisone program to help my adrenal gland make cortisol, and hoped for the best. It was better. Not great. But better. The severity of my migraines lessened. Although I could never get off the pain pills. I maybe didn't take as many, but the migraine just wouldn't go away.

When we moved back here in 2009, I had a terrible allergic reaction that completely blew my recovery. Every positive step I made I lost... and then some. I can't begin to tell you how discouraging that was. The body perceives everything as stress. Allergies included. My lesson book was getting bigger. (Relationships, jobs, allergies (food and the other kind), pain, heat, smells.... how big was this list going to get???)

It became clear very quickly that I wasn't going to be able to work at all and filed for SSD. That meant that I became completely reliable on my dad to pay what bills I had. Stress. It also became clear that I was sinking his ship. Once I realized that I filed for Bankruptcy. Add Money/Bills to the List. Or maybe Bankruptcy.

With an SSD claim, you have to see your doctor and a specialist monthly to prove you're sick. But you can't work. This drags on for years. My insurance was terrible. My bills were piling up. Money continued to be Stress. Add to that... the doctors couldn't actually DO anything to get me better because that would really cost something. Uggghhh. Treading water.

Then my dad was diagnosed with cancer in Feb 2011. Stage 4. He died in May that year. Grief, Misery, Death. Add those to the List. Stressed Out.

My aunt was diagnosed with cancer in Feb this year and died week later. Death stays on the List. Stressed Out.

A couple months ago, my dog went through months of pain limping around before being diagnosed with cancer and having her leg amputated. The cancer was bad. Making the decision of how to deal with it was equally bad. Stressed Out.

I look at these as Stress Dominoes. Some were knocked over quickly and some slowly. Some have been set up as early as my childhood since I have been plagued by allergies since I was a kid. My immune system has been at war my whole life. I think my adrenal gland has been fatigued since I was a kid. It just became SERIOUSLY, CHRONICALLY fatigued starting in 2003. The migraine was the screaming symptom. And I Fell Through The Floor in 2006. I have been trying to climb out since.

Vestibular therapy for my inner ear problem alerted me to the problem that things had really gotten BAD. Funny how things work. Because I was there 2x a week, I was getting my BP taken that often. After my aunt died, it dropped. It has always been low, but it became so low that they couldn't work on me. It was regularly 75/50, 79/53, 74/52, etc. Sometimes my top number would jump into the 80s. But then my bottom number would do this: 80/60. My therapist would say, "Robin, there should be more distance between these two numbers. There is almost literally no blood moving." Or should we get lucky and my top number would be higher, but my bottom number would still be hovering around 50. No matter what, it was BAD.

I saw a cardio guy. No heart problems. He said it was probably adrenal. And that was when I saw an adrenal specialist.

Mind you, I already knew going In to see him that I was hypothyroid (under active thyroid). I had been diagnosed with that about six months ago and have been taking the thyroid medication (more or less). Honestly, I wasn't that worried about it because my blood test indicated my case was mild. So, the doctor set me up for this infusion thing. Takes blood and then infuses me with cortisol and then takes blood again for the next hour and a half over half hour intervals.

What I didn't tell the doctor was that I was taking Dr. Wilson's Herbal Adrenal Support Formula. This is something I have taken in the past off and on. I have to get it online and I usually forget to order more. So years can go by without me taking it. Yeah. I know. Anyway, when the blood pressure junk started, it occurred to me that it was probably adrenal, and not heart. I went online and ordered some more and started taking it. I was drinking it that day in my juice as they were doing the infusion. It never occurred to me that I might skew their test.

So, my doctor was very puzzled by my results. The thyroid was a disaster. My levels were off the charts bad. My antibodies were autoimmune. In other words, they are actively attacking my thyroid. Worse news, there is nothing doctors know to treat this... bah. I have my own ideas. My adrenal results shocked him. I know he was expecting those antibodies to be also autoimmune, but they were not. My levels were low, but within the normal range. Not great. And based upon my BP issues, he still thinks it is Schmidt's Syndrome. So do I.

That is when I told him about what I was taking. We went online. When he saw some of what was in it, he became convinced that it was possible that I had skewed his test and we are doing it again in a couple of months. If I am right, and I messed up his test, and my results flip: to me, that says the Herbal Adrenal Stress Formula is working. Yay! To him, I am not sure he is ready to come around. The traditional treatment is to put someone on hydro cortisone. Well, I know from talking to my doctor that it is all well and good in the short term, but not the long term. So I am really not down with that. Of course, what this means is that it would turn into Addison's Disease left untreated. But, I am not considering doing that.

I am just considering going a different way.

My original plan was to order the thyroid equivalent that Dr. Wilson's site offers and see if I can flip his test on the thyroid result. Unfortunately, right now they are out of the product. I will keep checking back. But, if that is possible, that would be *something to see*.

This doctor is a researcher. He works at a research hospital. The way to make someone research anything is to make them believe. If I can flip his test, that would be an awesome first step.

It would be one more domino falling into place. Not all dominoes are bad. It is how Big Ideas come to fruition.


found at www.weheartit.com

WHAT DO YOU DO WHEN IT COUNTS?

Well, I was just going to write one of my regular pseudo-crazy posts, which means a post like every other day of the week, until I found I was showcased as Blogger of the Week here. That sent me into a brain spin. You don't want people who have never read your blog subjected to your normal every day crazy stuff. However, it is an awful lot of work to try and trot out something else when you're going to revert back to the same old, same old come Sunday. I have my Magic Music day tomorrow, which is a totally different level of insane altogether. It is more fun crazy.

So, to catch the new people up, I suffer from a lot of chronic illness, the worst of which (most of the time) is migraines. I am in the process of filing for SSD, since I have had THIS migraine since January of 2003. Yeah, that wasn't a typo. The source of the migraine was my ex-husband. By the time I got rid of him, I didn't have the health insurance to get rid of the migraine. Life is just filled with irony. I tried living a life of no stress for four years. If anyone finds one of those, please email me the location so that I can go there, because I have yet to find that. My doctor says three years of zero stress will cure me in lieu of no insurance (or crappy insurance, which is what I currently have). Along with good diet, vitamins, and some Rxs.... I was able to manage all of it but the zero stress, so I am still here with the chronic migraine and filing for SSD.



I did give it the ole college try, though. I really didn't want to file for SSD. Really really really didn't want to file. We are at the Land of Last Resort. Not a pretty place people. *Breathing in and out slowly* However, I have become accustomed to living with my mother and step-dad. Been doing that since 2006. Don't ever say you won't go home again. You just never know. Parents, no matter how successful your kids become, don't breathe easy. They can lose it all and move back in on a dime. Stand ready and be prepared. This is another blog that isn't going as planned.

I call what has happened to me "falling through the floor." All of this chronic stuff that I have going on really tracks back to my failing adrenal gland, and an extremely weakened immune system. I was treated for years by various doctors for the migraine alone, because it was the most acute symptom that I had. When your head feels like it being pounded in by an anvil, it is pretty much all you can think about. However, none of the traditional migraine meds did anything to alleviate it. That didn't stop the doctors from prescribing the stuff, though, or digging any deeper into the root source of the problem. Eventually, I changed doctors (repeatedly). Even I knew that if the meds weren't working, something else was wrong. By the time I got to a doctor who agreed with me, I was really close to falling through the floor. I financially fell through the floor at the same time she correctly diagnosed me. That was a bad news/good news situation. I finally knew the answer, but I no longer had decent health insurance to solve the problem. It is tempting to curse right here, but I am really trying to quit.

Instead, we went with generic Rx (as few as possible), the best vitamin choices, and that stress free life (yeah right). I moved to FL, and in with my parents, and tried to find that stress free existence. I am a freakin' magnet for stress. You can read about it in my previous blogs (or not). I mean who really wants to read about that crap? Not me. Head hurts thinking about it. But, it is all right there for your whatever. Most people shake their heads and leave comments like, "Why Robin, why would you get involved in that mess?" Yeah, like I have a good answer for that. Dumbass comes to mind. And there went the cursing. So, no, I didn't find the stress-free idyllic life in Florida. And things got worse, hard to believe (I know), when we all moved back to Georgia. So, that is where we are. No, I don't really live here. Nice house, though...



Everyone should be up to speed. Yeah, this blog is finally starting. I will try to keep it short. All of this mess has made it very clear that there needs to be a website out there of doctors who actually LISTEN, TREAT THE ROOT OF THE PROBLEM, and THINK OUTSIDE OF THE BOX or THINK ALTERNATIVE MEDICINE WORKS. So, I bought a domain name after weeks of writing down domain names searching for just the right one. It was somewhat excruciating. The goal is to actually start a non-profit organization with this mission statement: to assist people in their journey from illness to wellness. Short and sweet, right? According to Peter Drucker all non-profit mission statements should be right to the point, and something that everyone can claim to be theirs from the volunteer to the CEO. The long-range goal (as long-range as I can see it right now anyway) is to build houses all over the US for people who have fallen through the floor, but didn't have family, like I did, to catch them. There are a lot of people who have been misdiagnosed or undiagnosed. These are working people who get sicker and sicker until they lose their job, their health insurance, their house, and become homeless. Why are they homeless? Because our healthcare system let them down. Hopefully, the site will stop many people from falling through the floor. But, we have to do more. We have to pick up the people who have already fallen and give them the tools to get well and get back to work. I believe in this site. I believe in the people of this country. One day we will be building houses for them. You heard it here first. I hope that you will be one of the people who helps to make it a reality.



So, one day fairly soon, you will be seeing something from me that will be in the form of an email asking for doctors who meet this criteria. The site needs those names. And it will ask you to copy/paste that email and send it to everyone you know. We want to help people all over the US, and the only way we can do it is if the email travels all over the US. That is the first stage of getting this project off the ground. I have decided that I can be sick and not make a difference, or I can be sick and help other people. I am voting for the help other people. I hope that you choose that, too.