So life has been rather..well...boring this week. Not in a bad way, just in a run of the mill way.
We had our Pearl Jam posters, tickets, and yes even the guitar pick that Mike McCready threw to BF framed and mounted on Sunday and in two to three weeks they'll be hanging over our TV in the place of a piece of art that I will not loose any sleep over taking down.
Come to think of it, Sunday was a pretty good day. At the craft store where we had the framing done, the little man and I scanned the art supply section and scored some pretty cool stuff while BF waited for the framing girl. After the craft store it was nap time. Unfortunately nap time really has become nap time for both the little man and me. Around mid day I just get so tired that I either feel like a zombie or I sleep...and I really like to sleep anyway, it's just not a very adult thing to to. It is however a very adult-with-fibromyalgia-and-pulmonary-hypertension thing to do. So I'm not sweating it.
After our naps, we had some lunch and went to the supermarket as the cupboard was oh-so-very bare. I brought the oxygen and was totally prepared to go sit in the car if the need arose, but it didn't...I managed to make it all the way through the shopping trip and home before I crashed. And I mean crashed. By the time we'd read the little man a story and put him to sleep and BF had put the perishables in the fridge , I was fast asleep on the couch where I had lay down next to my wonderful air compressor to get that pulse ox up into the low 90s at least. I only woke up when BF turned off the tv in preparation for going to bed himself and then stumbled into the bedroom, snuggled up with my sweetie and fell right back to sleep.
The next morning I had my first interview for a teaching job ever! It was very exciting and it went very well. This was the reschedule for the interview that I missed the night I was admitted to the hospital. I got to sit down with another job candidate and talk to two peer interviewers for almost two hours. I really enjoyed it and I felt like I got to showcase my talents nicely. I also found out more about the job and it sounds great. It may require the the little man go back to daycare for the two days a week that he's here, but it also might not. If I get hired I'll just have to see how it works to have him around those two mornings (as he sleeps nearly all afternoon). I should know in the next week or so as their contract year starts August 1st, so I'll be letting you know as I know.
Tuesday was nice. The little man and I hung out, he napped, we hung out some more. Then BF came home and we all hung out before driving the little man to his mom. BF and I went out to dinner afterward to celebrate my interview. Isn't he cute? He takes me out to dinner to celebrate my first interview! I didn't even have to get the job to be treated to a steak!
Wednesday I sat. All day. I wasn't feeling well and I was depressed and miserable...so that was great.
Today I had four doctors appointments scheduled and then had plans to go out to dinner and see the Sex and the City movie with my mom. - I woke up with a searing migraine at 7:30. The first doctors appointment - with my neurologist of course -was just not going to happen.
The second was my first visit with my new pulmonary hypertension doc, so I absolutely had to make it. After half-sleeping until the very last minute, I threw on the skirt I wore Tuesday, a tee shirt, my awesome new cream mary janes (I'm a bit of a mary jane addict - BF endlessly makes fun of me when we go shoe shopping) and hauled my ass to the car. It was drizzling outside, most probably the cause of my migraine; barometric pressure changes are my worst enemy. When I walked into the office, exactly on time, my mom and BF were already there waiting for me. When I found out I had this disease they signed on to Rachel's PH Team. I hate doing the doctors appointment rounds myself and as this is so serious and there's so much to think about and remember, I felt I needed a team. And since BF lives with me and the drugs and the symptoms and mom is an RN who is more like my best girlfriend now that I'm an adult. She really is an awesome mom; during my turbulent teens I never would have guessed that she and I would have such a wonderful relationship as adults. She respects my space and my decisions and my mothering; we can talk for hours; and best of all, she is totally there for me, from babysitting when I'm sick as hell to coming to doctors appointments and saying the things that I can't bring myself to say. like when she told the doctor today, point blank, that the little questions that I was asking about what he thought about how promising the medication I'm on is for people with my type of medical profile were really about the fact that the idea of mortality was "hanging over my head like a cloud." I couldn't get out the "so do you think I'm going to die" question and BF is as scared and depressed and unable to express all of that as I am, but she can and that's why she needs to be on the RPH Team.
The visit went well, with my migraine boiled down to a thick syrupy acid slowly eating at my right temple rather than a searing ice pick spreading screaming pain throughout the whole right side of my head and neck I was actually able to think and converse, so that was helpful. The new doc seems good. He stopped and asked for questions several times, answered them as thoroughly as he could with the limited data he has right now, didn't bullshit me about things that he couldn't answer yet, and was generally very congenial. I'm still going to get a second opinion after we get the results of my 6-minute walk test (yes, it's exactly what it sounds like - how far can you walk in six minutes, back and forth along a thirty meter length of hallway - sounds fun!) and another echocardiogram, just to make sure that the pressures that they got from the first one weren't artificially elevated by an acute episode. I asked about repeating the cardiac catheterization, but he doesn't think we need to right now; I don't know why not, I'd rather have exact pressures and not the often-faulty estimation from an echo, but as he's the one with the M.D. after his name, there will just be sound waves for now.
So after that appointment I thought I had an appointment with my psychologist, but apparently what I thought was a standing appointment was not and although the other girl that had the appointment time I thought I had was kind enough to offer me her appointment (very sweet), with the state of my head I opted to go home and make more appointments instead of chatting about my current state of misery for an hour.
So that's what I did. I sat on the couch and scheduled five different procedures and tests at the local hospital and an appointment with a hematologist per PH Doc's suggestion. Several specialists have actually suggested that I see a hematologist because of my complicated medical...situation is the best word there I guess...but this is the first doctor to actually give me someone's name and number, making my life exponentially easier. I'm hoping that this guy can get me insurance approval for at-home PT/INR testing so that I won't have to (forget to) get my blood work done at a lab.
By this point my migraine was being evil again, so I rescheduled my eye doctor's appointment and lay down to take a nap, assuming that BF would be home at five-ish, wake me up, and hopefully I would be in good enough shape to keep my movie and dinner date with mom. Unfortunately I forgot that he had also made a dinner date with his mom. Not expecting me to be here, he didn't come home at all and I slept until just past six. When I woke up my head still felt like a big throbbing mess, so I called my mom and cancelled. Then I promptly fell back to sleep until nine when BF arrived home with the little man.
Poor little man. He was coming home to us early this week anyway because we're going to my grandfather's house down the Jersey shore for the weekend, but he has an infected nail that just hasn't been responding to religious applications of antibiotic ointment, so I told his mom that I'd take him to the doctor tomorrow and get it looked at. But not poor me, because damn that kid lifts my spirits better than any amount of antidepressant ever could. I walked into the living room and instead of "hi" he just said "I like you" - what could be better than that?
So tomorrow we'll go to the doctor in the morning and perhaps try out the new watercolor paints that we got last weekend and then we're going to go over to my mom's so that he can nap there while I go to the appointment that my rheumatologist has very nicely squeezed me in for. And after his nap we'll go to one of the massive retail giants and buy sand toys and assorted other awesome beach stuff. I'm really excited to take him to the beach, even though I absolutely hate both sand and the Atlantic Ocean where it touches New Jersey. It's weird that I can genuinely look forward to something I really don't enjoy in the least because I want that little guy to have a blast. I have a whole bunch of reflections on this whole becoming a mom without having a baby process that I'm working on; I might actually finish it sometime soon, but as of now it's very much a work in progress, just like the mom side of me.
So I'm hoping to have a nice weekend. With mornings on the beach, nice long afternoon naps, miniature golf, evenings with BF, a couple hard lemonades and a Scrabble board on the porch, and maybe even a trip to the kiddie amusement park where the little man can get high on cotton candy and spun around on mini versions of my least-favorite amusement park rides.
I can't wait to tell you all how it goes!