I was a little afraid that after last week I might crash, but the opposite has happened. Out of the past 14 days I have managed to walk the dogs eight days. 15 to 20 minutes at a moderate pace may not seem like I am setting the world on fire, but just a few weeks ago I almost never left my house. It is a miracle!

I have been able to shop, clean the house a bit, have company over and still not feel like I am going to die of pain and fatigue. I cannot do all this in one day of course, but just to be even a little more functional with less pain was my original goal and I have already exceeded that.

Side effects are still accompanying me on my journey and the latest new one is really bizarre. About two weeks ago I began to get really icy limbs and the front of my face would also really drop in temperature. I am used to the chilly limbs as part of the disease, but this has been insane. I do not ever recall getting this cold before – and I fell into an icy lake once (long story). My limbs and face get so cold I can’t move the muscles. Even tepid water feels like it is burning my flesh off. Meanwhile my core burns with a fairly severe fever. As the days passed I began to have what felt like panic / aggression attacks. I finally realized the cause of these bizarre episodes last night. My adrenal glands are coming back to life! I seem to have a major adrenaline surge 3-5 times per day and following those my sympathetic nervous system constricts the small blood vessels in my skin. As wonderful as it is to have my adrenal systems functioning again I am hoping that they get normal soon. I am not an adrenaline junkie!

I still need to keep on a regulated schedule of medications too manage the other side effects, but the good news is if I keep myself in check I feel like I can survive my infusions.

I spent time reading through my personal journal the other day. Although a lot of stuff made it into my bog it is nothing compared to the rollercoaster in my personal journal. I would never have been able to survive this treatment to this point without all the prayers, love and technical support of my family friends and even strangers. I just wanted to say thank you to you all. From those of you who fed my family meals whose ingredients altered almost hourly based on my stomach’s shifting needs to those of you who have called, written and sent messages of support I thank you. You have enabled this journey to succeed thus far and one day, some how I am going to pay it forward.

Sophie

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