Saturday, July 14, 2012

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.

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  1. Dang girl. You just cannot catch a break. Sheesh. I suppose you've already considered a holistic doc? Just to see? And the Gerson Therapy--wait, I mentioned that already, didn't I?

  2. Sheesh Robin. I wondered what was going on with you. Hang in there. I know that sounds trite... (did I spell that right?) Keeping you in my thoughts..

  3. I sounds like you know more about your own body than the doctors do. Fancy that.

  4. I think you are right. Do what you feel is right.

  5. I'm with JJ on this and guess what? I had a great asthma doc as a kid that finally got me over the hump by letting me decide what I was going to take, based on knowledge of my own body. So... you go girl and do what you must- for you!

  6. New pieces to the puzzle eventually show what the picture is. And it's good to have a name for something, to identify your enemy and stage a plan of attack. Each tidbit causes stress, causes a reaction ... but each also informs ....

  7. I am a firm believer that we know our bodies better than anyone else, so it does not surprise me that between that knowledge and doing a bit of research, you were able to find a more natural manner in which to treat your symptoms. I would be interested to see if you can flip the Dr's test results thus giving him a moment of pause and a reason to delve into research which is much needed. Medications, especially long term use of man made medicines tend to act like poison to our bodies. Good for you for looking for more natural remedies. Always thinking of you and keeping you close in prayer! ~Hugs, xoxo


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