update. and how on earth is it October?

[another one of these posts that I've been working on for several weeks, just letting sit there unpublished. time to post something]

Part 1 - lovely two weeks in August - before the backslide

I enjoyed several weeks in August feeling pretty "good." It was amazing. I could walk further, talk with family & friends longer, tolerate sound and chemicals better. It was wonderful to feel more alive!

I was able to go to the beach one afternoon with my love. we sipped Starbucks latees, a rare treat. lay out under the sun on a colorful quilt. enjoyed watching a sweet family play in the sand and surf. a seagull pooped on me. I have a reputation as the victim of bird droppings.

I had the blessed privilege of attending a dear friend's wedding. this is the first big social outing I've had in over a year at least. I made it through the ceremony and began to fade during the reception but was still able to stay for toasts, dinner and time to congratulate the happy new couple.

Oh, those last two weeks of August were such a blessing :)

Ha! and I have no pictures to show for it.

Part 2 - Then I began to backslide.

September was a rough month.

I did enjoy some improvement the last weekend of the month and was able to visit dear friends and meet their newborn son. Oh, what a joy!

Then back to a slump.

Then, the first weekend of October, I seemed to perk up some. On Sunday, I felt pretty "good." After my HBOT sessions, we dropped by to visit Spencer's family. So nice to see them. And then we hung out with my family. And I folded laundry. Lovely day. It was the best I had felt since August.

Then, the next day: HORRIBLE. like, unable to do anything but lie in bed, SO fatigued, searing pain in my muscles and joints, feeling so heavy that I was sure I'd sink into the ground. needing assistance to walk, falling, etc. Miserable week.

part 3 - our theories


We think this is from the HBOT. It seems like my body is beginning to actually fight the infections on its own. therefore, a battle is taking place. my body's resources are all going toward the battle, leaving little for me.

I was running a low grade fever in the afternoons, which is significant, seeing how I've never gone beyond a low grade fever ever in the past 9 years. and the occurrence of such fevers is rare. Perhaps my immune system is finally starting to do its job :)

that's our theory at least. I have a phone appointment with Dr. J this week on the 13th. We're eager to see what he has to say. Please pray that it would be a good appointment and wisdom for Dr. J as he decides what next to do w/ my treatment.

I had HBOT last Sun and Sat. I began to feel a bit better late Fri and early Sat to hang out with Spencer's family to celebrate my sweet sister in law's birthday, but began feeling worse on Sunday. I sure hope A LOT of critters are being killed for how terrible I've felt for the past month, excluding a few "good" days here and there.

And so far this week? awful. incredibly dizzy, fell a few times while home alone, so had to crawl. my right eye is so blurred that I often need to just close it in order to see clearly out of my good eye. I've needed a wheelchair to get from our bedroom to the bathroom and even then, SO lightheaded and out of breath.

part 4 - what about Spencer?

Spencer has continued to be very tired from working long hours and then all the maintenance of my PICC line and silly left arm issues and IVs. I'm in no shape to administer my own IVs - mentally and physically, w/ the tremors, forgetfulness, etc. So he has to do it all. It's a lot to keep track of.

Oh and have I mentioned that he's amazing? :) how blessed I am to be his bride. His patience, perseverance, and unwavering faith are continually a blessing and encouragement to follow his good example. I still can't believe or understand why God let me be his wife. I feel so undeserving. Thankful for a God Who is gracious, blessing us far beyond measure.

He's continuing to do treatment, down to 3 weeks off, 1 week on. His symptoms are decreasing, except for occasional flares due to stress, herxing. Again, he's sort of at a plateau because of the stress of caring for me.

I wish I some pictures to share. I just never remember to take out the camera :) I'll try to get better about that.