flipperclot's Journal

Still riding the wave- don't like it much.  Lets see, what has happened since I wrote last.  I worked 12 hours on Tuesday-had to go in early to accomodate an early sedation because they powers that be decided to give the other early person the day off -wasn't that nice of them?  Screw me -again.  Wednesday every muscle in my body ached, slept mosty of the day.  Did get some chores done after I picked the kids up. Worked thursday- 1/2 the day until my DR. appointment with the EP.  He seemed pretty nice.  I am going to have a 24hour holter monitor first to see if there is evidence of inappropriate sinus tacchycardia -heart rate higher all the time -versus POTS.  If the holter monitor is OK, then they will do the tilt table test.  I hate all this waiting.  Got really upset with my PCP over thelast few days.  Had my INR on Tues. drawn at work since I had to go in early -called them with the result at 2pm, of course I hit on HIs 1/2 day off.  Called Wed. to get my coumadin dose, told to take extra and come in thurs for blood, asked to talk to the DR. both days.  Waited and waited-no call.  After seeing the EP guy, I called at 430pm, the office isn't supposed to close until445, but the Dr. was gone for the day.  I just started crying -I had asked for 3 days in a row for him to call me back.  I said you guys can't keep doing this to me, I finally hung up.  Cried the whole way home, tried to get a hold of my husband, as he should have picked up the kids and be on his way home after work -no answer.  Opened the garage door and his car was parked in the garage.  Came in the house, and he said he was getting ready to go get the kids, that he got off early and came home - nice of him to tell me and call me back and pick up the kids on time.  I went and picked up the kids -I feel like I am so in hell.  I hate being upset in front of them, but I couldn't hide it.  Daryl is pretty much useless to me at this point.  Wednesday he went outside to finish hauling the mulch around -I had to cut the bushes in the front bed-he sucks at it- so I did that and came back in and did some cleaning.  I called the answering service to see who was on call for the DR. office.  I was in luck- it was my PCP.  My chest was killing, I felt like I couldn't take it anymore.   Dr. Kile called me back-thank God.  He asked me what was going on, and of course I turned into the whiny baby.  I told him I can't live like this anymore.  He asked if the symptoms were worse -I said no, but I just can't take it anymore.  I asked if he wanted me to go somewhere else for medical care since he wasn't calling me back -he said no-that wasn't the case -he just hadn't gotten the message.  I told him what the EP said -so now I have to wait longer, and I told him about the lab work from the endo being better -which to me means that isn't the cause.  He said he would go over everything -get the labs from the endo and either call me or have me come in the next day. Daryl fell asleep on the floor for the rest of the night -so I had to take Sophia to soccer practice and finish the homework, and get baths done myself.  Friday -got to go to my daughter's field trip to a historical mansion -I don't usually get to do those things because I am at work -so that was fun.  When  I got home, there was a message to call a person back to schedule the heart monitor.  I called back -voice mail x2.  Called and asked to talk to a person.  Told the girl who schedules them went home sick and tried to send me to voice mail.  I told her that that was not acceptable, and that I couldn't believe that in that huge office ther was no one to cover that person's job when they weren't there.  I was transferred to a secretary who wasn't sure why that was so difficult either.  I got a call back and the test is scheduled for Monday.  Called Dr. Kile's office since no one had called from ther and it was 230 -didn't want them to forget about me again.  They said they were waiting for the bloodwork to be faxed, then someone would call me.  315- the Dr. office called and asked if I could come in at 4.  Went and picked up the kids, went to the appointment.  Dr. Kile sat down with me for about 1/2 hour.   Talked about the lab work from the endo -he says the lab values may be off some because from a different lab with different referece ranges, asked about the decreased Vit. D level.  He says that shouldn't be causing all this, but the endo had already told me to start taking caltrate +Vit D -3x/day, but I am only managing to fit it in 2x/day -yippee more pills to swallow.  He said he thinks a lot of this is anxiety.  I told him I wasn't sure.  I told him I felt like my depression is under control -I know when that is getting out of hand and I am not afraid to admit it.  He said he could see me getting freaked out every time I have to wait for something else to happen .  I told him yeah -I've been waiting a long time for someone to tell me what is wrong with me, and I still don't know.  He said he could see that .  I asked him wouldn't that freak him out a little if he were in my shoes.  He said it might.  So I don't know -maybe anxiety is getting the best of me.  Plus I said- you know since I work in a hospital, I know that a lot of these things that I am waiting for can be done fairly quickly -so maybe that is part of my problem- because I am used to patients getting things done.  This just seems so stupid to drag this out and make me go through hell for forever wondering what is wrong with me andnot getting treatment- feeling like crap in the meantime.  So he said he was thinking about putting me on another med for anxiety or increasing my Effexor, but since I was getting the halter monitor on Monday, we could hold off, unless I wanted to do it.  He said he was going to push it a little harder if I had to wait longer for the next test.  My INR was low again -1.8 no increased dose for 3 days, then regular dose, then check INR next Thurs.- So I give up on that.  It seemed good for about 2 weeks, then went all haywire again.  I forgot to ask him about trying the Coumadin instead of warfarin to see if it made any difference.  I was so tired by then, that I know I was staring off into space.  So I guess I am status quo for right now.  I am still getting the brain drain if I stand up too fast, and my resting HR is a little higher more around 80, but not as high as I thought it would go.  When I go from lying flat to standing though I go up into the 140's in about 60 sec.- now that makes ya about drop to your knees, gert SOB. dizzy etc.  Last night my hand s and face were getting tingly again.  Tiday I got up and went to Sophie's soccer game, came home and went back to sleep for 4 hours, got up and took Noah to jump on the neighbor's trampoline.  Went out for supper, came home and finally got my closet cleaned out and organized.  Putting my hands up over my head- whether it be putting up the girls hair or cleaning seems to produe the SOB and increased HR too.  Now my chest and back are both hurting, and so I will take some Tylenol along with my goodnight pill cocktail and go to bed now.