They still don’t understand


Help! (Photo credit: Rainier N.)



Sometimes I wish having a rare disease came with a handbook. Doctors are interested in  Cowden’s but  most of the time they don’t understand.


Yes I understand I have lots of things going on. I have at least one appointment doctors every month till January.


At the end of September I see the skin doctor. He takes care of the effects of breast cancer radiation. This time I have lumps getting removed on my knee and the top of my hands.


That is probably the easy appointment.








Headache (EP)

Headache (EP) (Photo credit: Wikipedia)



Sometimes its hard to get anyone to understand that I don’t feel good. I am  tried, have an upset stomach, I have two kinds of GI issues.

Food doesn’t look good anymore.


My appointment last Friday was good. I do feel a whole lot better than March.


Who know if the PH medicine helped. The same thing happened in 2007. I felt terrible, spent time in the hospital, got better and went home.


True I went home with basic heart failure medicine. The medicine that upset my stomach I stopped within a month.


I told the Lung doctor and my stomach issues. Told her most of the time I can predict the hour my upset stomach and runs will happen.


She wanted me to go back to the GI doctor, make sure I’m updated on colonoscopies. Dave told her all about my colonoscopies. I have them every year. Next one scheduled for March 2014.


He continued with yes she has lots of polyps but the GI gets them out. Spoken like a husband who gets scared the colon cancer could come back.


I see the oncologist the end of November.


Dave  says the runs ( and I mean almost every day) is a small price to pay for the PH medicine working.








My plans are to talk to my PCP about my new issues when I get my flu shot. She is still one of my newer doctors. So far she is pretty good.


So here I sit getting ready to go out. Hopeful that my stomach will be ok.




Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s