1st post on "Post-Treatment"

[free2be]

I feel like I left a family behind on the pre-treatment forum. Hum... I don't know if I like switching forums

Just a quick update 2 weeks after my first CK treatment. I feel like I'm doing pretty well, better than I thought I would. I'm hopeful I won't mess myself up by actually saying that. I am still fatigued, but not as bad as last week. I am still having some headache/facial pain and a spot of numbness, but it isn't bad. There have been a few times that it's been worse or more sensitive, but all and all I am pleased with how I am doing thus far.

I want to think that some of the natural supplements that I was taking before the CK and am still taking may be helping. I think the Boswellia and other things to help with inflammation may be key in keeping some of the inflammation related pain at bay; at least that's what I'm hoping and I'm hoping and praying that it continues.

I posted an update on my little 9-year-old friend who is also doing remarkably well to the doctor's bewilderment. Here's that link:
Special Prayer Request
http://anausa.org/forum/index.php?topic=13162.0

Connie

[Jim Scott]

Connie ~

Welcome to the post-Treatment forum!  I'm pleased to learn that you're doing well at this point, even with a few deficits that will very likely prove to be temporary.  I'm glad the supplement regimen seems to be helping you.  Your prayer request is noted and will be honored, I can assure you. 

Jim

[jaylogs]

Welcome to Postie Land!! Take it from me...this is a MUCH better club!  Seriously though, I hope you continue to do well in your recovery!!
Jay

[free2be]

Thanks, Jim, Jay, and Donnalynn,

I'm doing okay. About the same, just fatigue easily still and some face and head pain and a spot or two of numbness in the face. I do get a wonky head feeling (I guess that's what to call it, I'm not sure I ever read anyone's definition of that term) especially when I am doing a little more than my body apparently wants me to. Three hours or so of any activity that is vertical is about all I can do before I feel like I'm crashing and if I don't rest then my head gets swimmy and feels like it's full of rocks or something. Overall, I'm not complaining. If I stay this well, I'll be happy. I'm just wondering at what point, if I'm going to have problems from the swelling, when in the process that might start or when I can assume I'm not going to have issues from it. I figure it's a pretty big time window, but if anyone has thoughts on when the symptoms could get worse from swelling if it is going to, I'd appreciate the input.

Connie

[free2be]

Week 4 post CK:

Having a fair amount of facial pain, head pain, and increased numbness in face. I contacted Dr. Chang and he said it is my trigeminal nerve and it will likely get worse before it gets better. Something to look forward to  The cold really bothers my face, it's like a tooth ache in my face/head; so, I ordered a small microwavable heat pack to tuck in my hat/scarf. I'm wondering about using heat to treat the pain, but if it's from inflammation, that usually makes inflammation worse; so, I haven't tried it. Guess I won't know until I do.

I'm also having some wonky head and equilibrium issues, but could be worse. Still fatigued, but whether it's from radiation or Addison's is unknown...or a combination of the two. My right eye is irritated; Chang said probably dry from radiation treatments. Overall, I'm doing "okay," though the face/head pain is getting to be a bit more than I can handle without mediation.

Just thought I would update you all.

Best,
Connie

[Lizard]

Sorry to hear you are having so much pain, hopefully it resolves quickly as it can really interrupt your post treatment progression.
please keep us updated and hang in there,
Liz

[free2be]

Thanks Liz & Donnalynn,

I did better today; the pain was not nearly as bad. In fact for a while I thought it was gone...well, may not.

I'm okay and will keep you posted.

Best,
Connie