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June 16, 2015

Health Update: What's Really Wrong with Me

We just got back from a beach vacation with my in-laws, where I, in true spoonie fashion, ended up having to spend much of the time in our (very nice) room. I made it to the ocean twice the roughly five days we were there, only once to actually get in it, and spent the days following each trying to recover. I couldn't help half-hoping that the next time I go to the beach, whenever that is, will be completely different from this and the last time I went, the only two times I've been to the beach since becoming so sick.

But meanwhile the time has come for another update:

As if it was not already clear as day to me that Fibromyalgia is just a label that doctors give to people with more problems than they can or want to attempt to help, a conclusion I arrived at with my first go-round with the functional medicine approach in 2013, I even more firmly believe so now. There are so many things wrong with me that to think they could all just be summed up with "Fibromyalgia" is just absurd.

Just to briefly catch you up:

- I saw a functional medicine doctor back in fall 2013 for the first time for approximately six months of treatment until we moved. While most of his patients vastly improve, including my mother who has an amazing success story, I was one of those rare ones who just did not respond to treatment like we'd all hoped and expected. He admitted that I was the most difficult case he'd ever seen. Turns out that's because I'm extra sick.

- Since we moved, we have now begun treatment with another--brilliant--functional medicine doctor three hours away. You can read more about this decision in my first health update and the tests I've had done to begin treatment with this doctor in my most recent health update. And now that we've discovered umpteen new issues that my last doctor didn't catch, we now see why that treatment did not bring the results it should have--I had a lot more to treat that we didn't even know about.

So here is where we stand now:

I was able to finally go back and get the 12 vials of blood retaken three weeks later--on our 3rd anniversary--and those results thankfully came through fine. But in an odd twist, it turns out the first results were actually somewhat reliable, so we have the confusion benefit of two sets of results for the cost of one. Lucky me! My hair test results for metal poisoning have also come back. We are still awaiting results to determine all of my gene mutations, along with a test for thyroid and hormone issues. I also had my first round of QRA and Field Control Therapy done, to determine what organs have what issues and what needs to be done about them.

While I thankfully do not have Lupus, Epstein Barr, or Rheumatoid Arthritis, though I am currently headed toward the latter in the future if not addressed, we have found tons of issues and haven't even finished all of the testing that will be done, such as checking for past head trauma. For now, in addition to many, many, many smaller, harder to list issues like thyroid, iron, white blood cell, B-12, Vitamin D levels, adrenals, ph imbalances, and possible hypoglycemia, etc., we have found the following:

- I have serious autoimmune issues--my soldiers are in overdrive because of infections and so are overworked and attacking everything.

- While I do not have classic Lyme Disease, I do have a Lyme co-infection, Babesia, likely contracted from a tick bite, spider bite, etc., at some point. I pretty confidently am going to point to one of two rather suspicious bug bites I had when I was around 12 years old. This infection is at least attacking my liver, if not more, which we will determine in the future.

- I have a virus lodged in my gut, likely leftovers from chicken pox, which I had when I was 5 years old.

- I am being/have been exposed to petroleum and am reacting to it, of all things (it's actually in much more common items than you'd think), as it is attacking my uterus and possibly more, which we'll determine down the road.

- I have Leaky Gut Syndrome and likely Celiac Disease, the former of which will be treated with a different supplement than I used last time, as the QRA testing revealed my body does not respond to Repairvite--that's why it didn't work.

- I have mercury poisoning. While most people's culprit for that is amalgam fillings, I don't have those--my assumed culprits are childhood vaccines containing mercury and spending much of my childhood at my grandfather's dentist office, where my mother was his dental hygienist, so I was frequently exposed to the fumes.

As I mentioned, gene mutations and hormone issue results are pending, along with a test for past head trauma/concussion in the future.

What's next is three intense days of several powerful treatments of my infections beginning this Wednesday and several on-going supplements to address my other issues, with more QRA and FCT testing in a month to see how we're doing, at which point I'll also begin repairing my leaky gut--hopefully successfully this time.

It is rather shocking to me to think that I have Babesia and mercury poisoning, for example, and likely have for years and just never knew that was what was wrong with me. It almost makes me upset, like, Why didn't we seek treatment for this sooner? But the truth is that the diagnostic tools and treatments I'm doing are more recent developments and weren't really being offered years ago. So there's nothing I could have done. We've gotten on this path to treatment as fast as we possibly could have. 

It's also a legitimate question to ask what virus/infection came first/where all this even came from. And we don't really know--the point is that we know these problems are there and we're going to do everything we can to remove/suppress them to get my body to its maximum functioning potential. But since it's my body and history we're talking about, I have to guess-reason through it all just for my own sanity. And in my limited understanding I would think I started out with gene mutations, obviously, from the start (we know I have one and are waiting to hear on others, but I would bet money we'll find I have more) that already had my body not functioning correctly, followed by mercury poisoning that further weakened me, with chicken pox coming during that continuous poisoning that lasted all through the first ten or so years of my life, followed by the bite that gave me Babesia, and by that time I was just too weakened to fight what I had and anything new that came along. It all really makes me wonder how I function at all, and also pretty well indicates if I'd not sought this treatment, I would simply continue to worsen over time, until who-knows-what happened.

Right now, this treatment process seems so. horribly. long. But that's how it seemed the last go-round, and it went by eventually. Plus we have a much better chance of actually helping my majorly sick body than we did last time, simply because we're finding so many new issues we didn't even test for before. I feel like last time we just scratched the surface of my issues, and this time we're going to dig and dig until we get all the answers.

I hope to write a post on an emotional aspect of all of this at some point but wanted to update you all with what we know so far. And if you don't hear from me for a while, you'll know it's because I'm hunkered down getting through these first treatments. I am just thankful for answers at this point--now to do more waiting to see if doing what I'm told will yield results this time around.

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June 3, 2015

5 Little Ways to Hugely Help Those with Chronic Illness

I recently shared three ways that chronic illness is painfully isolating and lonely. It was an attempt to give an honest glimpse of what my life--and the lives of thousands of others like me--is like.

Now I'd like to share what you can do to help your loved ones living with chronic illness. As I write this, I feel like this list is a no-brainer. Yet that may be the case simply because I'm on this end of the issue. Either way, I hope this list falls into the hands of people who want to help those with chronic illness and aren't sure what they can do.

Now, I do have to put out there first: this list is intended for people who truly care. Don't let this list guilt you into saying things or doing things you ought to do just because I'm saying them. While the little things are priceless, because-I-should offers or comments aren't really helpful. If you truly don't care, then don't pretend to, and if you do, please show it.

A very well-meaning someone asked me once, "What can we do to make you feel better?" as if there were a way to fix it all. I was so thrown off by the unfamiliar question that answering with, "Just pray," didn't even seem right. So I gave the honest answer: "Nothing." There's nothing you can do to make things all better, but you can do so many little things to help along the way--and those little things are priceless.

1 - If you pray for them, say so. I don't want to say that praying alone does no good, because of course it does. But it does twice as much good if you actually let the person know you're praying for them. Praying for them but never saying so--particularly saying nothing at all--leaves the ill person with the understandable though incorrect assumption that you don't care or haven't noticed their suffering at all. Be it in person, through a Facebook message, or by snail mail, please let them know if you are praying for them.

2 - Mail is underrated. Speaking of snail mail, the old classic is still just as meaningful now as it was long before the Internet existed. Sending your ill loved one a card, a package, any little something out of the blue is so meaningful. And it tends to arrive right when they need it most. I have a friend who sent me a necklace and a note out of the blue a few months ago, and she could have sent me a smiley face on a post-it note and I would have been just as happy--the gesture alone meant so much to me. (You know who you are! :)

3 - Reach out first. We the sick are aware that our life happenings aren't exactly pleasant to hear about. For that reason, we're going to have a select few people that we tell our happenings to. We're not going to dump it all--or even a small fraction of it--on just anybody. I'm not going to just volunteer the information on how I'm doing, how much pain I'm in, how upset I am about upcoming tests, how rude a doctor was to me, etc., simply because things like that are just selfish to unload on anyone. Yet I do want to talk about it. If you want to know how I, or any of your chronically ill loved ones are doing--like really doing-- you have to ask. And there's a good chance they're wanting you to.

4 - Please ask questions. Along those same lines--yes, ask questions! "How are you?" is the most vague, impersonal thing you can ask. We are all trained to say "Fine" to that, an option I tend to go with simply because it's easier and/or I know the person asking doesn't really want to know the full answer to that. But if you do want to know, then by all means ask!

And beyond that, if there is anything you're curious about or confused about, please feel free to ask! Any questions show that you care and want to understand. Don't just sit at home wondering something--you'll be able to stop wondering and also encourage the person in the process by your interest.

5 - Donate. Offering to clean, pick up groceries, or drive your ill friend to the doctor are just a few ways to donate your time that are a huge deal to the ones receiving your help. And while I know I said the little things are extremely helpful, I have to include one big one: Chronic illness is expensive. I don't even want to know how much money has gone into my medical expenses just in the three years we've been married. But I do know how much my initial upcoming tests and treatment are costing--and those have been made possible by the grace of God in the form of a few very generous family members. As I have said to someone before in regards to donations, I don't turn down free money. As much as I wish we didn't need help coming up with thousands of dollars, I realize that it's God's way of providing the money. And if you know someone who's sick and facing medical bills, you too may be the way God provides that money--even if seems like a small amount to you. It doesn't have to be big at all. Every little bit helps and is felt so deeply.

There are certainly many more ways that could be included on this list, but these are the main ones that stand out to me. Want to go even deeper? I recommend these posts by Rebecca at Caravan Sonnet: 12 Things to Pray for Someone Struggling with a Chronic Health Condition and 17 Ways to Help a Friend with Chronic Illness During the Holidays, the latter of which can also be more broadly applied to all year long.

So if you have a chronically ill loved one and have ever felt at a loss of how to help, I hope this list has given you some insight. We know you can't make everything all better, and we don't expect you to. We simply need to be reminded that you care and that you're with us in this very lonely struggle. It is truly the little things you can do that help keep us going.

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