Thursday night was the most difficult night for me yet. Hearing the news that my heart was affected put me in utter paranoia - why was my body doing all this and how could I get it to stop? I felt a bit better stopping work, but it still scares me why/how my body is reacting so much. My gallbladder, GI, heart - was there anything else that was wrong? I kept running through every feeling, ensuring I could still breath deeply, pee without hurting, not swelling, etc - just to ensure that all else seemed ok.
Once Adam got the kids in bed, I stayed in the guest room Thursday night. I couldn't sleep for the fourth night in a row. Not one minute. I was beyond exhausted, and ready to ask the NWMH team in the morning for something for anxiety and sleep. I had panic attacks all night, and felt best with the lights on just pacing the room. In the middle of the night, I started my period. I figure that's a good sign of my body returning to its normal state. But then within another hour, I started having diaherrea every hour on the hour. I kept forcing myself to drink fluids, but was getting worse and worst with anxiety. I prayed and prayed, and felt a very strong peacefullness come over me about 1, maybe 2am. I thought maybe I would get to sleep. Turned off the lights, and the bathroom called again. After that, I couldn't calm down. Why all this again? Was it that the nutrition was up, or was my period just aggravating my GI track like it used to? So many questions.
I got desparate, and ended up calling my cousin at 3am. I could feel my heart skipping beats, which isn't normal with a pacemaker, and I was scared. Probably all anxiety, but everyone was asleep, I didn't want to worry my parents, Adam needed his rest, and I had to talk to someone. I woke her up and she agreed I needed to see the cardiologist in the morning. I tried to relax after that and couldn't. I finally went in to wake up Adam, and we talked for about 2 hours. By then, just laying on the bed talking, I felt all strange again, and had shortness of breath, shakiness etc. I went down to take my morning meds, came back up, and just got worse. I was trembling so badly. Now, this could be due to not sleeping in 4 days/nights, and all the anxiety, but hell, I had no idea. I called my parents to come over and get the kids. When my mom got here, I felt so bad I told her to take me to Edwards ER.
So, Friday morning started off at Edwards. I was having trouble thinking/talking/breathing, so they put me on oxygen, did my vitals and bloodwork, etc. Bloodwork showed I was low in potassium again, so they gave me baby aspirin and 2 huge potassium pills. I was still having the chest pain - directly in my heart area, and feeling the skipping. They all looked and said nothing was wrong, but did another CT scan (yes, I'll be glowing in a few months). CT looked normal, and the ER doc gave me some lorazepam and potassium to go home with. I felt better but still no rest.
We got home, and Adam and I packed up to head to Northwestern. I was feeling like a zombie, with no sleep for so long. I couldn't even shower. We made it downtown, and met with the psychologist (whom I told the whole story too, and asked her for help with the anxiety, sleep, and the disability stuff). She basically said she couldn't do anything about those, but would work with Gonsalves. I'll meet with her weekly to discuss just how I'm doing and how to cope mentally. We'll do phone/web chat weekly, and in person once a month to save me trips downtown. We next met with Beth, who was happy with my progress on the juice boxes and wanted me to ramp up to 7 a day. I've done 5 the last few days, so I felt good about that. She said they placed an order for more boxes and it would come Saturday (today is Sunday), and only a really small shipment came, so something is messed up again. One more damn thing to coordinate next week. I get panicky every time something like this happens. It sometimes feels like nothing can go they way I want it to be.
On the way home, Dreyer called and scheduled a mugga (sp?) test for Monday, and a visit with Dr. Gordon, my beloved cardiologist) and a pacemaker check on Wednesday. So, everything was set to look at my heart. The nurse said the dr. wanted to call, but was in Florida at a conference, but knew what was going on.
Then Dr. Gonsalves called, and asked me to explain the echo results. Um, I don't think I'm qualified. She said she hadn't had a chance to review, but wanted to know why it was ordered, etc. I told her Dr. Saltoun the allergist wanted to do it as a precaution, and I had had it done on thursday. The results showed my refraction rate was 25-30, when it should be 40-60 as a more normal range. I mentioned that I was prescribed the Coreg beta-blocker, and she thought that was fine to take and to work with Dr. Gordon on all heart related items. She said she didn't seem to think it was related to EoG, usually the heart would constrict vs. expand (I'm not sure how she would know that without reading the results, but I knew going through Dr. Gordon was the right thing). She said she didn't want to prescribe anything for sleep or anxiety or do the disability or Adam's FMLA, that should all be done through my primary care (who I was merely keeping in the loop). So, one more thing to coordinate. I called Dr. Kellly, my primary care, and asked for a sleep aid, and they refused to give me one. I think people are being so cautious, but the lack of sleep I feel is making me worse, not better.
We got home from Northwestern, and met my Aunt Kathy after picking up the Lorazapam and Coreg Beta Blocker. I emailed her Friday morning and said I would really like an extra hand for laundry, cooking, and just being able to have help for Adam so I could go upstairs and rest. She texted me she was leaving immediately, and it was relief to know someone was coming to just be around. She came around 4ish, we ordered a pizza, and headed to my parents to see them and the kids. I went straight upstairs to bed, but of course couldn't sleep. I took the beta blocker and one of the Lorazepam from the ER, and took 1 benedryl at my parents, praying something would make me go to sleep. We went home at 7, and kissed the kids, went up to take a shower, took a second benedryl and went to bed. I think I got a few hours of sleep that night.
Saturday morning, I got up to help Adam with Lucy, and then took my morning meds. I tried to rest in teh morning, but didn't do to well, just tossed and turned. I came down for juice boxes and finished up the Flagyl antibiotics. I kept getting all anxious and by the early evening, decided to call Dr. Gordon's cell phone. I left her a message - of course - I couldn't help crying. She called back within minutes. She said she was at a conference and couldn't read the results, but said everything would be ok. And no, none of this was fair, but we would get through it. We have an echo from 1 year ago after Drew's pregnancy, and all was normal. She said all my echo's show weird refractories, just the result of the pacemaker so she wanted to look at it. She also had ordered the Mugga test so we could get an exact refractory rate - that'll be a better read and we'll know what to deal with. She said this has a 1/3 chance of getting better, 1/3 of staying the same and we manage it with beta blockers, and 1/3 of it getting worse, and we'll deal with that when we get there. She said to keep on the beta blocker, and I asked her about the lorazapam and something for sleep. She couldn't believe no one prescribed it. She ordered me Xanax (which I took with a beta-blocker when I first had my pacemaker in), and she ordered Ambian for sleep. Adam went to the 24 hour pharmacy that evening to pick it up, while my parents and Aunt Kathy ate and watched the kids. He came home, I helped with Drew's bath, then I went up to take a shower, and took an Ambien. I slept all night for the first time.
This morning, I feel like a zombie. I'm just absolutely exhausted and head back upstairs to rest - not really to sleep. My chest feels heavy, which I remember was typical of me on beta-blockers and anti-anxiety. My hands are extremely shakey and I just feel out-of-body, but I'm getting down my nutrients and staying hydrated. I'm sure the new meds will take time to get used to, but I'm on the right path I think. At least I got 8 hours of sleep after 4 days/nights of nothing. I continue to pray this upcoming week of tests go smooth. It's nice not to think about work; there is enough on my mind.
The mail came yesterday and my disability was approved for one week, so something is wrong. Aunt Kathy said she'd help me with that tomorrow to see what we need to do. It makes it hard to do all this when you're so sick. I'm finally letting go and let other people help - I can't do it all.
I'm looking forward to getting out of this groggy state, where I can stop shaking and start to feel energetic again. One day at a time. Please continue to pray that this all will heal, and my body will recover soon from all it has gone through. I drop down on prednisone again tomorrow.
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