Ugh - such a miserable day today!! I had an appointment at the University of Miami, which ended up to be a total waste of time. Don't ask me why, but I spent almost the entire appointment crying like Lucy Ricardo...so embarrassing!! I didn't see that one coming and wasn't feeling the least bit emotional or anxious before meeting with my doctor. I did ask her what lies ahead for me and she said "why would you want to go there??". Her answer caught me off guard and I stuttered and kind of shrugged. If I had to do over, I would tell her exactly why I want to know....it's been six long and miserable years and I want to know what to expect...is that unreasonable? She saw no reason to tell me anything upsetting, but I think it is unprofessional to ask me why I would want to know. So frustrating!!!
After inquiring about support meetings, my doctor said they have a support group that meets in their offices. Why didn't she tell me this two appointments ago??? In fact, the camera crew from Katie Couric's nightly news, filmed their last meeting.... missed my fifteen seconds!!! I'm not sure if I would go to the meetings since they are in Miami, and the meetings last two hours. I know how much I can handle, this sounds like too much. I bet they don't even have a waitress!
There is no question that I would completely lose it cognitively by the time the meeting would start. I'm going to have to give it some more thought. On the other hand....if my adrenaline kicks in, anything could happen. If that were the case, they would no doubt eliminate me from future mailing lists....or buy a karaoke machine for future meetings...depends on the "crowd". It could go either way! Now that I think of it, maybe I'll give it a try...LA LA LA LA LA LAAAAAAAA.... Islands in the stream, that is what we are...something tells me that I would be coming home with a note pinned on me, saying I was disruptive in class. (Erica, remember the Elmar Seminars??) I talk a good game, but I would probably leave on a gurney! I'll keep you posted on this monumental decision :)
After speaking with Dr. Rey, I think I am going to switch cardiologists and my sleep disorder doctors. There are more and more things going on. It is all so complicated with overlapping issues. Dr. Rey disagrees with my cardiologist regarding the appropriate time to do the aortic resection and valve replacement. The aneurysm is 4.5 cm and it is her understanding that this is the time to "go in". My cardiologist says 5 cm. This discrepancy is one of the reasons I am thinking of checking out the new cardiologist. The trauma from this surgery would worsen my condition tremendously, and this would be permanent. Because of this, I'm holding off until the last minute.
I'm really surprised to be writing. It was such a downer day ~ didn't plan on getting on the megaphone to spread the word.
Two little ditties (Dina) I wanted to mention. Since I randomly mention different friends and family, I feel like I should have some kind of attachment listing everyone I mention on this blog, along with their pictures and bio! Kind of like the wall at the post office! Hhhmm, who would be the "most wanted"????? Who wouldn't be?????
Another thing that I would love to do, is to have another blog using a different name....maybe I would use Lucy Ricardo, since I was channeling her at today's appointment. There is so much more I would love to share, but just can't. Either because it would be TMI for a well person, too upsetting for some family members, or the fact that some family/friends could/would be offended. These are things that other very sick people would be able to identify with....I just can't go there publicly.
Well Ricky, I did more spainin' than I expected tonight.
Cathy, good idea about another blog, one that you don't have to censor in order to protect family and friends. The point of all this is to help you work through this. There are so many things that are out of your control, but using your blogs to help you deal is in your control. Go for it!
ReplyDeleteAnd by the way, your doctor's reaction to your question was unbelievable. No wonder you broke down. She doesn't have to be brutal about giving information, but to shrug off your question like that is unconscionable. It goes back to things that are within your control. Your mind is in your control, giving and receiving information is in your control. Doctors need to deal with the patient not just the illness.
Darlyn
Yesterday's appointment was horrible and I was getting in my own way, as to reacting properly. Next appointment, I'll hopefully be better prepared.
ReplyDeleteThank you for the encouragement Darlyn ~ it means more than you could know! I have to get my act together to start a tandem blog. I would feel like Dr. Jekyll & Mrs. Hyde :)