Monday, June 6, 2016

The In Between of Chronic Illness

I got a call last week from my endocrinologist. At my appointment 2 weeks ago, she had told me that she was concerned that there was more to my hypogylcemia than just low sugars but that my testing so far had been borderline/inconclusive. She really felt that our best chance to figure out what was actually going on was to repeat the Cortisol Stimulation Test I did about 2 months ago that caused me to go into anaphylaxis.

It's safe to say I was less than thrilled when I heard that I was going to have to repeat this test. I was actually legit scared. But, thankfully I do have a doctor that I trust, so I agreed to re-do the test to make sure we aren't treating something I don't have or not treating something I do. I was a bit nervous knowing what was coming, but was doing okay in not letting that overwhelm me. It was just a matter of waiting the 2 weeks until we got to the scheduled test date.

Then I got a call from my doctor early last week. She told me that the infusion center had notified her that they did not feel comfortable having me repeat the Cortisol Stim Test based on my reaction the first time. They were not willing to have me come and re-do the test even at the lower dose that my doctor hoped would prevent a bad reaction. So, instead, I was given some blood work to get drawn early in the morning to hopefully shed some light on what is going on in my body. Once we get those results, then we will discuss how we need to proceed whether doing some more testing with me admitted to the hospital or if there is another way to get the information that we need.

When I got that call from my endocrinologist, my initial reaction was to sigh in relief. I didn't have to repeat the Cortisol Stim Test! Then the reality of it set in and I realized it wasn't as big of a relief as I had thought. The reason we were going to repeat the test was because we were still trying to figure out the underlying cause of my low blood sugars. While the thought of anaphylaxis is not exactly comforting, realizing that this meant we still would not have the answers we need brought on a whole new cycle of unanswered questions. How are we going to figure this out if we can't do the most least invasive test that would give us the best chance at accurate information? What if all my blood work keeps coming back borderline/inconclusive?

All of a sudden I realized I desperately wanted to be able to do the test when only a few hours before the thought of it made me nervous. Unfortunately these situations become all too common when dealing with a little understood condition. The very testing that could give us answers is too dangerous to try. Treatments that we think might be the best option can also cause severe side effects. We get stuck in the in between of not knowing and not being able to know.

Do I want to find out I have some form of adrenal insufficiency? No, of course not. But if I DO have it, then I want to know. Not having answers doesn't mean that I don't have symptoms. It just means that we don't know WHY I have symptoms and they are going untreated. At least when we have answers we can try to do something about it.

It's like the night we got the call from Dr. Afrin's nurse confirming the MCAS diagnosis. I cried. Not because I was scared, because I was relieved. We already knew something was wrong. We had known for 8+ years. I cried in relief when she called because after all those years of not knowing, we finally had a name for what I had already been fighting. The diagnosis wasn't terrifying because we already knew my body wasn't working right. It was welcomed because it now gave us a name, a face, something to fight about. It gave us hope.

Dealing with this endocrine issue is similar. We know something is wrong. There is no reason I should be having these low sugars while on continuous feeds, especially the reactive ones. But I am. While the thought of another diagnosis is not at all what we want, the feeling of not knowing is worse. If I do have some sort of adrenal insufficiency, we want to know! If I have it, I've already been dealing with it, it's just been going untreated. At least once we know, we can DO something about it. Being in this weird in between spot where we know something isn't right but just don't have specific answers is almost tougher than not knowing. At least we would have hope that treatment would help.

Any chronic illness, but especially those where things are just not well understood, unfortunately leave us in this in between place way too often. Add to that doctors who don't care and it is a tough road to walk. I am so thankful to be in a place with doctors who understand and want to do everything they can to help. Unfortunately, more often than not my appointments end with them saying that they wished they could do more or had more answers.

Don't we all...

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