The Roads That Take You Home

I have been awake for over an hour. That means I have been tossing and turning since about 7:30am, unable to go back to sleep. Now, if you only knew me, you would understand how mindblowing that is. Of course, the beginning of this wakefulness was prompted by a full-blown migraine. However, once that settled down to something to bearable, it just became my thoughts keeping me from going back to sleep.

We are still on vacation. Over the weekend we arrived in the town I grew up in and graduated high school from, blah blah blah. The last time I was here was last May for my dad's funeral. It is so strange to come back here and NOT see him. Perhaps, it is more odd to know that I never will again.

A friend of mine from high school has a twelve year old son who is undergoing chemotheraphy for a brain tumor. They are in the third and final round. The tumor is shrinking and things are looking good. His son has remained upbeat throughout the entire experience. I think that is because his parents, family, and friends have provided a positive outlook, and he has embraced it. This really makes a difference in how someone does in this sort of situation. Kids are so resilient. The brain decides whether or not you get better, so whatever you tell them, that is what happens. Voila. Anyway, he is a brave and remarkable young man and doing so well.

In many respects, kids are like dogs. I mean that in the best of ways. My dog has responded so well to losing her leg to cancer. She was in pain for a few days and struggled. However, she was walking on the first day. A few days later, she was running. She hasn't slowed down since. She wipes out sometimes; she pivots because she forgets that isn't her strong suit, but immediately picks herself up and is off to the races again. I love that about her.

Here's the thing: kids and dogs don't second guess themselves. They just go with what is. It seems like my life would be so much easier if I could learn this lesson. And I freely admit that I am trying. However, I can't seem to help myself. I like having Plan A, Plan B, Plan C, etc. And all of that leads to a lot of second, third, and fourth guessing. I just don't want to be stuck with absolutely no ideas. The thing about this philosophy is that it leads you wandering down the same mental roads hoping you find something you missed the last time you were there.

The mental road taking up all my energy these days is my Schmidt's Syndrome Diagnosis, simply because autoimmune issues are so tricky. It has me on that What If path constantly. Based on the fact that I have other autoimmune issues, I probably did mess up the doctor's blood test the last time I took it by taking the Herbal Adrenal Supplement. Hence, the low results, but the surprising result of it not being autoimmune. So, we are retaking the test in a few months. However, even the doctor has no way of knowing how much time it takes for the Herbal Supplement's effects to leave my system. So, my test could still come back a false positive. If that is the case, I actually do have Addison's Disease. We just didn't wait long enough. The thing is this: the doctor and I both truly believe this is the case. Where the doctor and I part ways is right here: The only way he "knows" to treat Addison's Disease is internal hydro cortisone for the rest of your life, while I would say go back to the Herbal Adrenal Supplement because it is a cure. It actually flipped the antibodies, making them positive. It stopped them from attacking the adrenal gland. All autoimmune means is that your body doesn't know your own body and attacks it until it kills it. And Addison's Disease is literally a death sentence. All hydro cortisone does is slow down the process.

Like every other good thing I have ever done, I found the cure by accident.

Of course, that is IF I found the cure. Unless, I never had it. Unless the antibodies are just waiting to flip on me. You see, this is why it would be better to be a dog. They don't think of this kind of junk. In that case, my death sentence is just out there waiting for me. Or it's out there waiting for me to find the cure. Either way, it sounds very exhausting. At least, at 9:00am.

At 3:00pm, on normal days, I tell myself things like the point of all this health junk is that maybe on top of MY IDEA, I am meant to find natural cures for all of these autoimmune issues for the entire endocrine system. Why? Because that is the next place they are going to take me down if they haven't already. For instance, the vascular system is part of the endocrine system. And it is constriction of the vascular system that causes migraines. And I have had a constant migraine since 2003. Doesn't it make you think that maybe someone should test those antibodies to see if they are autoimmune? Maybe that's just me. But, one website I was on said that anyone with Schmidt's should have their endocrine system checked regularly. Your antibodies can turn on you at any time. That includes antibodies for organs like your kidneys, pancreas, etc. You sort of need those things to work and don't want your antibodies to start attacking them to the death.

Writing so much about health and health issues makes me think even more about my dad. He always felt like Don Quixote tilting at the windmill. He spent the last forty years of his life trying to get anyone to listen to him that natural supplements were the way to go. Prescriptions were band-aids at best. Ironically, he barely got my attention. It was so non-stop that some went in, but most went out. I was like, "Yes, dad, I am taking my vitamins. Prescriptions are bad. And be careful of doctors. They are not trustworthy. Got it."

He was right. Each time you see a doctor, be careful. You are entrusting them with the most precious thing you have: you. If you have an ongoing problem, and the doctor continues to write a Rx, you are getting paperclips and duct tape. That would be an unacceptable fix for your car. Don't allow it to happen to your body. A symptom is a wonderful thing; it means you have a problem and you need investigate until you find the SOURCE. A Rx simply masks the problem. So, dad, I was listening more than you thought. I got it.

It makes MY IDEA even more important. It really is your idea. You just didn't know it. It's your idea on a much bigger scale. Word of mouth taken to a whole new level. I am my father's daughter after all. Not only did I get all of your crappy DNA, I got your fighting spirit. That means I might come up with Plan Zs, but I will never GIVE UP. However, I will always miss you and it will always make me sad that you won't see this come to fruition. You would have loved it. And I would have loved sharing it with you.

I'm sure we'll go by the old house this week. I always stand outside on the sidewalk and imagine doing this, but I never do.

Image: FreeDigitalPhotos.net

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

It's Got A Name Now

I just got test results back that should be soul crushing. The doctor gave them to me not knowing that I would get on the web and research and research and research. And the more I researched the worse the news would be. The irony is that I am not feeling remotely crushed. I could be if not for a series of circumstances that altered his test making him think one thing and me knowing another. More on that later. Probably a lot more. Turns out I am more like my dad than I would have ever believed. Schmidt's Syndrome. The source of at least some of my problem. It is autoimmune. Of course. Turns the antibodies in your system against you and attacks things like your thyroid and adrenal gland. (Accept for one hitch here which I will explain later, hence my lack of soul crushing as noted above.)

It can also go after the rest of your endocrine system. And you should be checked out regularly, because you can be okay one day and not so much the next. The antibodies can just decide that your pancreas is the enemy one day. Or your liver. Or your kidneys. Or, get this... your vascular system. You know that lovely system that shrinks tight and causes... migraines. You can develop antibodies that attack your vascular system. Who knew?

It sucks being sick. It really sucks being sick and not knowing why.

In other news, I have found a purpose. At least for today. I will share it with you later. It is a small one. But no one changed the world in one giant swoop. It was always with tiny footsteps. Little bits of courage change one life at a time.