“You don’t have HLH anymore.”

I have weekly appointments with Dr. Superwoman. I have to admit she is one of the most thorough, diligent, comprehensive doctors I have ever had. I continue to struggle some with anxiety, but it is improving. Actually everything is improving: rash, nausea, pain, stamina. Ever week I am able to report some progress. But after the hospitalization, my blood pressure was high. Dr. Superwoman wasn’t too concerned, it wasn’t stroke level, but of course, it is a stressor on the body and some of my medications alter my body chemistry and thereby, bring up my blood pressure more. So we started a low dose blood pressure medication and I started monitoring my blood pressure and temperature daily.

For those of you who aren’t medical, let me tell you a little about blood pressure. It can change quickly. High sodium diets can raise it, body position changes it, illness obviously can change it, a lack of sleep can change it; I think you get my idea. But you know what also change it? Anxiety (usually raises it).

This simple request to monitor my vital signs twice a day caused me a lot of anxiety. Especially the temperature. Ever time before I had an HLH flare, my temperature would go up. From July-October I had a fever- every.day. Once I started my last round of chemo, the temperature subsided, but that was only because of the steroids (steroids suppress fever and I was on a ton of them remember?) . Our thermometer makes a triple beep when a fever is detected, a single beep when it is turned on and I was just like Pavlov’s dog. Every time I heard the single beep, I was incredibly anxious. Would I hear the triple beep? This went on for a week; therefore, my blood pressure did not improve. Dr. Superwoman and I talked about it. I told her how anxious it made me and that I was also worried about fever as we discontinued the steroids. “You don’t have HLH anymore, so I would only expect fever with infection, but not HLH. Your chimerism came back, you are 100% donor. Of course though, continue to keep an eye on it.” The words hung in the air for me. You don’t have HLH anymore. YOU don’t have HLH anymore. You DON’T have HLH anymore. Repeat after me, you don’t have HLH anymore.

It’s still hard to believe or comprehend. I have an entire new immune system. One that works, that I borrowed it from a 25 year old male. That it will allow me to live a hopefully long life. I will hopefully see my kids grow up, retire with my handsome husband, even see grandchildren one day. I don’t have HLH anymore.

Don’t get me wrong. I still have days. Days where I am in pain, tired and nauseated. But I have days. I will be in a wheelchair for a while. I will be on medications (maybe) for life. I have no hair. I cry with fatigue and pain sometimes. But better to be that then beautiful in a coffin.

A devotional that was shared with me:

The good news for us anytime we find ourselves being broken is this: our sovereign God is overseeing the refining process in our lives. He sees the beginning and the end. He has a good future designed for us, and ultimately waits for us in Heaven.

We can be sure that our period of brokenness is not the end, but rather a passage and a process to a rich new beginning.

We must never limit God’s ability to redeem even the worst, most pain-filled experience in our lives and turn it into something worthwhile, something for Him.

Regardless of the source of our pain, we must accept that God knows, God is powerful, God loves, and God is at work. We may not be responsible for what has happened to us, but we are responsible for our response to it. We must ask ourselves, “How can I walk through this pain? How can I benefit or profit spiritually from this?”

It is not so much adverse events that make you anxious as it is your thoughts about those events. Your mind engages in efforts to take control, to bring about the result you desire. Your thoughts close in like wolves. Determined to make things go your way. You forget that God is in charge of your life. The only remedy is to switch your focus from the problem to His presence. Stop the striving and watch and see what He will do.

I do not have HLH anymore.

Where is god taking me?

2 Replies to ““You don’t have HLH anymore.””

  1. You are looking great, Demara! I’m so happy you have a new, improved immune system. I remember your laugh so well and miss hearing it. Prayers will continue for you and your beautiful family.

    Liked by 1 person

  2. Oh YES!!! Prayers answered! Where is God taking you? Where are You my friend, taking God?
    Your testimony is of His sustaining power and grace!
    Share Him!

    Liked by 1 person

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