TheMosmillers.org

It's amazing to me how quickly all of this happened. I wonder if you think that was a good thing? I'm glad to hear you're feeling OK and you're on the mend. That's a good thing.

I did have one comment about your anger at it taking five hours for blood test and consult. Unfortunately, my experience tells me that you have to be proactive in letting everyone know your situation and standing up for what you think is best for you. Most of the technicians you will run into won't have your chart in front of them and won't know about your case. Best to tell them up front (you may even have to explain to them what CFS is) and ask how you might be accommodated. It can be exhausting to have to repeat yourself but necessary....

Good luck and keep thinking happy thoughts.

P.S. I'd like to meet this Mei Ling -- is she in the picture archives anywhere? Nice job, Mei Ling!

Dear Andy,

So glad to hear you're on the mend. No witticisms needed. Just take it easy and get better!

I too am so glad your friend, Mei-Ling, was able to visit and help you out. Big thanks to her!!!

We're having a beautiful, warm summer day here; so I hope the snow is not too deep where you are.

Stay warm, be well.

Tom

Actually, there is a picture of Mei on the site. If you go to the Pictures page and pick the first option labeled "Croquet at Andy's House", we have a good shot of her in the last picture in the collection.

It's pretty scary that all of this happened so fast because it hints at a kind of unspoken danger-factor that lies beneath the surface. I talked with a few docs about that and I think they just always fast track this procedure due to the possibility of catching the cancer before it moves elsewhere. It's still weird though because the problem wasn't all that new. I just didn't know there was a problem until I was told. They were essentially fast tracking something that had been around for an indeterminate number of years, which makes me nervous but unable to really do anything about it but wait around. On the bright side, I can't report symptoms of any kind that would be linked to a really serious spread, and the times it takes these things to spread in the first place can be pretty arbitrary. I just have to wait on the bloodwork and all of that. It's easier to handle that now that I'm on the other side of the surgery for sure.

I'm not sure how to handle Hopkins' lack of understanding for CFS. The trouble is that, in order to combat it, I have to have energy where little exists. Additionally, I would need to know who to actually tell, because receptionists can't help you, doctors can't help you (because you can't see them till hours later) and others are not readily visible. I got a healthy dose of reality when I mentioned this to Dr. Rowe (the guy I see for CFS who works at Hopkins) and he told me that the only real solution is to lower my standards regarding the way the hospital deals with this illness. I could really see a career in chronic illness advocacy at places like this. If I get better I might look into it, because I know what has to be done but just don't have the tools to get it done. I'm not the only one like this for sure.

I am glad to hear that you are recuperating well. I tried previously to post a message but it did not work. If this gets through, please know that you continue to be in my prayers.

Michael