this was written in 2008 i think.



So I am finally going to quit being lazy (for a few minutes at least) and give everyone a little update.

Since I got out of the hospital I have been doing a lot of doctors appointments. I have seen my primacy care and my cardiologist, my physical therapist, a mental therapist and an eye doctor. I will be seeing a dentist on Thursday and my appointment with the Social Security office for my disability paper work is the 20th. I have had to speak with my cardiologist a few times about my medications but have been able to go with out seeing one until yesterday.
On Sunday, I got home from a day out and took off my shoes and my feet were very puffy (I had cankles). It was terrifying because that can be a symptom of Congestive Heart Failure. LUCKILY!!! It was just a reaction to the super dose of verapamil I am on. The FDA has approved/studied verapamil for up to 480mg, but HOCM (my disease) studies show that it can be helpful if you take 600mg. Therefore, I am taking the 600mg, but one of the side effects is swollen feet. I told the doctor that as long as it wasn't CHF then I am okay with it. It may not be the most comfortable thing in the world but it was nothing compared to the pain that my heart is in when I am on no medication. I do think that the verapamil is working but I do not know if it is working enough to stop taking the pain killers. When I finally get all my pain management stuff together I will hopefully be able to stop taking the methadone and try something a little less addicting.
I have also seen a case manager who has been slightly helpful but also a bit of a headache. I am glad that the doctors warned me about it but I think its ridiculous to have people that are supposed to help that just don't get it. I had a referral in for cardiac rehab and somehow when I called the central appointment line to make other appointments they made me an echo when I asked about cardiac rehab, it made absolutely no sense. When I went in for the appointment (i didn't know it was an echo until I showed up) they explained that my referral was in there but didn't looked like it had been sent to the network. The "network" is doctors in the area that accept Tri-care, referrals get sent to the network when the military hospital can't see you themselves. I wasn't exactly sure how to fix this so I figured I would try my case manager. She did not get the problem at all and instead of looking up my referral she just told me to get a new referral. I was so pissed! So instead I decided I would call referral management. The lady I ended up speaking to knew my name from helping my case manager with my pain management referral. She was very helpful and got everything straightened out. However in the end we found out that a referral wasn't needed for cardiac rehab, just a written prescription. Then I called my primary care asking for the prescription he never called me back, so when I went to the cardiologist for my feet yesterday I asked about it and was told that with my disease and my heart the way it is, the rehab was a bad idea. So all in all, it was pointless but I did learn that even with a case manager you really have to do things by yourself.
As for the issues with my pain management, Tri-care referred me to a doctor that is not actually taking patients for anything except injections. I called my case manager and she spoke with referral management and got a list of doctors that I could go to. However, to get an authorization code the doctor has to approve to accept me. Because of this we had to send my records out to multiple places in the area and are still waiting for a response.

On another note, the past few days have been pretty good...until today. On Saturday, Dan, Jeremy and I went to the Home and Garden show. We got tons of information and entered a lot of drawings. The only bad thing is that because I put my real number so that if we won they could call, they are calling me CONSTANTLY!! to make appointments to show us their products. They call two or three times in a row then call again later, it is very annoying especially when I can't answer the phone.
On Sunday, I went to church with my friend Krystyn. Krystyn and I have known each other for a long time as we both grew up going to the same church in California. Her church was very different from what we are used to. First Baptist was(is) a very traditional church. The church she goes to now is much more contemporary. We then went back to Krystyn's for lunch with some friends that she wanted me to meet.