Well I had a simply wonderful week last week.  Sunday, Monday and Tuesday I was feeling a generalized sense of malaise and fatigue.  Wednesday I had to skip our weekly (or monthly, or bi-monthly, or whatever) board game night so that I could crash on the couch with my oxygen.  Thursday was much the same.  Thursday night I had to wear a pulse oximeter overnight to prove to my insurance company that it was actually necessary for me to have oxygen.  When I put the damn thing on it was already in the low  80's, (off oxygen) and when I woke up it was 79%.  That morning a rep from the oxygen company come over to complete the test, which included having me walk around with the pulse-ox on while on and off of the oxygen.  On oxygen it went up to the low 90's which is generally what I'm shooting for, but without the oxygen it stayed in the low-low-80s.  It also monitored my heartrate, which is supposed to be supressed by the lopressor that I take regularly.  Clearly it wasn't working because while walking around my apartment at a leisurely pace, on oxygen, my BPM went up to 157.  So I called my PH doc, who said that it could be nothing, or it could be lots of things and I needed to be seen in the ER.  I've heard that line so many times I almost expect it now.  

So I went to the ER where they found two infiltrates on CT that they dubbed "pneumonia" in the right and left lower lobes of my lungs and admitted me.  I got to my room at 2 am and then had to wait for the attending to come in and assess and admit me.  The one little boost to my night was that I got to show off the program that I have on my iPhone that keeps track of all of my medications and their dosages, so instead of having to rattle all of them off and try to remember which dosages go with each drugs, and then spell them out, I could just hand my phone over to the doc and let him go for it.  It seems like something so simple, but when you're on eighteen different medications - several of which the regular med-surg doc has never heard of, it really isn't.

So I got settled in that night.  I had my own room with a nice big bathroom with a shower in the new wing of the hospital and the bed was sublime, air that automatically reacted to pressure points.  BF and my brother spent the day hanging out with me all day Saturday.  My dad hung out for a bit that night and we got to talk about cord blood banking and the possibilities that my step-mom being pregnant presents.  My dad isn't much for the medical info, I'm not even really sure that he fully understands what's going on with my health right now other than the gravity of it.  So I explained as much as I can about the drugs that I'm on and the advances that are being made and the difference between embryonic, umbilical, and adult stem cells and the possibilities for a match with the new baby versus my younger brother versus a stranger.  We talked about the price, which doesn't seem to be an issue for them (though I know that things are tight right now and that it won't be an easy two grand to come by - I'm not going to worry about that though because I know that he would pay anything for my life and I love him to death for it).  So I've got to find out a bit more about getting that set up and making sure that A.'s midwife knows what she's doing when she collects the blood, otherwise I'll have the OB that'll be standing by do it, the last thing I need is for a mistake to screw all of this up.  So my dad left that night and at some point I got to sleep, thinking that I was going home Sunday afternoon on PO antibiotics (yes, even after the pulmonologist and the rheumatologist basically came out and said that it was not pneumonia, they still were pumping Levaquin into my vein.

Sunday I was feeling fine, as I had been the entire time.  As long as I wasn't up and walking around my heart rate was normal and my PO2 levels stayed in the low 90s.  However, I was having trouble with my IV again.  I have notoriously bad veings, hence the PICT line the last time I was admitted.  After 5 hours in the ER I made them take that one out because it was too painful.  The venipuncture team had to come to get a new vein; generally, nurses can't find them.  Saturday night when it came time for my infusion of antibiotics, we had to move the new one.  I had tried not to bitch about it, but it had been sore throughout the day and when the nurse got a look at it and the infiltrate that had started to develop, she pulled it right away.  It sucked, but she got a new, smaller one in on the first try (apparently I got the penthouse suite, with the best nurses and the best rooms...lucky me.)  The next morning I had to get a chest x-ray to see if anything had changed.  When I got back to my room, anticipating having to have this new IV, which was starting to hurt and to radiate heat, replaced yet again.  Luckily, the nurse had managed to get the docs to transfer both of the IV meds that I was taking to pills, so I got to just get rid of the IV right then and there.  

So Sunday I got to see BF and the little guy twice, once in the early afternoon and once before bed with Dad, A., and my little brothers and sister; it was quite the crowded room and I loved it.  It makes it nicer to be stuck in bed when you're surrounded by people that you love.  The little man came in scrubs, which was a big hit with everyone there.  And he was pretty good while he was there too.  A. has a 5-year old and he and the little man are really starting to play together pretty nicely.  They kept me Sunday to see how I was reacting to the steroids, but didn't take another x-ray before I left on Monday, so I really don't see why I couldn't have gone home on Saturday...They just seem to have no sense of urgency when it comes to that shit.

Anyway I was glad to be home yesterday.  I can't understand what changed that made them release me, but whatever, they did.  The steroids make me want to pull my hair out with the goddamn hot flashes, but just sitting on the grass with the kids running around and a little fuzzyheaded man in my lap really did a lot for my mood.  We had dinner with my dad and the fam and got to just chill for the evening.  I was wiped out today, so LM and I colored and watched Oswald (his absolute favorite) and then he napped and I fell asleep for the better part of the rest of the night.  LM woke me up for a bit to cuddle after his dad came home and before he left for his mommas, then they left and I crashed again.  BF woke me up with shrimp marinara and we spent the rest of the night relaxing on the couch.  

Tomorrow we get to go shopping for baby stuff for A.'s shower next weekend.  It's getting so close and I'm so excited.  I'm also nervous that this baby is going to dredge up a lot of that "I really want to have a baby of my own" stuff.  It's going to be really bittersweet.  Holding that little angle in my arms.  Having it sleep on my chest.  Getting A. to let me hold it as much as I want.  Wanting it to really be my baby, not "our" baby.  I love that they're as open to us being involved as they are, I don't know what I would do if they weren't.  Cry probably.  But I'm going to cry either way.  It's just so unfair...everytime I think that I've gotten on top of my feelings about it, it comes back and bites me in the ass.  But as I said before, today is better than yesterday and while I know that this will not go away, I know that I can do as much as I can to make myself as healthy as I can and convince BF (who will hopefully have graduated to a more legal title by then) that I can handle taking care of a newborn and a toddler and a child and all of that.  

Disability still hasn't given me an answer either.  It's just three months now though and I expect that within the next month I should have their initial decision.  That's going to change things for the better.  Everyone I talk to sees no reason that they could reject my claim at this point.  I can't work.  I have a job interview on Thursday, but I think I'm going to cancel it.  It's too far away, it's too inflexible, I just don't have the nerve to commit to something that I feel I'm going to fail at.  Feeling unreliable is one of the worst feelings about this whole thing.  We need to work.  We need to feel productive, we need the social aspects.  We are meant to work.  I just need to figure out how to do that.  I can watch LM and I feel like I'm getting better at it.  It's weird, early childhood education is the last thing that I ever saw myself doing, but now that's my only real job and I take it like a job.  Of course I love him and that helps, but I research different activities that we can do and color big letters so that he's constantly surrounded by the alphabet...I'm trying to teach him the sounds that each letter makes and also trying to boost his fine motor skills so that we can start writing them, but now he needs to master being much more exact with the control he has over his lines.  Today we discovered that markers work much better, because he doesn't have to push down on them to see the results...He really seemed to like them.

Anyway, I've hit on like five different topics here.  Part of that are the sleeping pills, part is the painkillers, and of course the major part is that I've got a million things on my mind and when I start writing they start spilling out of my head.  So I hope they're coherent and I hope that just maybe some of them are entertaining, well written, etc.  But really, this is for me.  I need to get all of this crap out of my head and I really appreciate other peoples input.  Perspective is always appreciated, as long as it is done in a positive way...Ehat did our kindergarten teachers used to say? Constructive Criticism!

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