My Health Journey

Still no official diagnosis, and why I’m ok with it (for now).

If you’ve read some of my other “health” posts, you’ll know that I don’t really have a labeled disease to go with my auto-immune symptoms. I have had IBS for years, I’ve had Epstein Barre Virus, and beyond that, despite many attempts with various doctors and tests, don’t have an official diagnosis.

For the last 2-3 years I’ve had noticeable auto-immune symptoms, some of which I’d had for years and others that were new.  One of the new symptoms was rashes. Rashes that would come and go, mainly on my face, neck, arms and legs. I have to say that the rashes on my face kind of sent me over the edge. I had dealt with this for almost a year, trying everything I knew to do to resolve it. I was already mostly Paleo at the time, so when my symptoms all came to a head, I made some drastic changes to my diet by following the AIP.

During this time I wrote out a list of about 30 symptoms and took it to my doctor. He agreed that whatever was going on with my body was auto-immune in nature and when I asked him what he thought it could be, he said there were a lot of auto-immune conditions and that it would be hard to narrow it down to one.  I’ve heard of about 80 A.I. diseases, but because I read A LOT and because of my many symptoms I had been leaning towards Hashimoto’s. He agreed that could be a possibility, but my blood tests came back “normal” again.

He also suggested we do an IGG/IGE test to see what food sensitivities I had, although this test is best done when you’re eating a normal diet to get better results and I was on a very restricted diet, we decided to go ahead with it anyways.  It did confirm that I had immune reactions to many foods I was avoiding and a few that I was currently eating. I also had developed gall bladder pain and had more tests, but nothing showed up. This led to more diet tweaking.

Although a lot of my symptoms had somewhat resolved, or at least lessened since following the Auto-immune Protocol for over a year, I still felt like I wanted some clear answers. This past summer I went to a new doctor, an endocrinologist. She ordered a myriad of blood tests. The tests did show low Vitamin D levels and a few other things, but thyroid was normal, again. However, she had also ordered a thyroid sonogram which showed some nodules.(We have decided to just check these in a year and make sure they aren’t growing.) This has also meant I still don’t have any more clarity on what the underlying cause is, even though the amount of money I’ve spent on these tests should suggest otherwise.

I’ve had to ask myself “Does it matter if I don’t have an official diagnosis?”

Practically speaking, it would be easier to treat a known illness than an unknown illness.

But besides that, I think I just wanted to prove that it’s something. After years of being treated, by strangers and “friends” alike, that it was all in my head, a result of an anxiety disorder, or just how everyone else feels but manages to push through, I wanted to prove them wrong.  I wanted to say “Look. See. I told you. I’m not making it up.” I wanted to be validated by everyone who hasn’t believed my symptoms, my illness, or my feelings.

This last January I was reading about a challenge of scripture memory for the year.  You memorize one verse per week, you get to pick the verse.  It seemed easy enough and I though it might be something good to do. Only, I got to the second week, second verse and I just stalled there. I’ve been stuck on that verse since January (it’s now September). This is the verse:

“You were bought with a price. Do not become slaves of men. In whatever situation someone was called, brothers and sisters, let him remain in it with God.” 1 Corinthians 7:23,24

I so needed this verse, for this time.  I read it over and over. I lingered upon each word. I felt something change in me.

I was bought with a price. I do not belong to myself. I belong to Jesus.

Do not become slaves of men. What they think, feel or say about me. Be a slave only to Christ and what he thinks, feels, and says about me.

In whatever situation someone was called. Chronic illness, loss, isolation, unanswered questions, defenselessness. In all these situations.

Let him remain in it with God. God has called me to go through this time. He is using this time to do something in me that I do not know, to an end that I do not know, but ultimately for his own glory and my good.

I can rest in that.

So, although I currently do not have an official diagnosis, I’m ok with that, for now.

 

Here’s a good article on continuing to search for answers, and following your instincts regardless of what others might say: http://www.thebaconmum.com/silverlining_lyme_disease/

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