Friday, December 14, 2007 5:48 am  <|>
<261> Where Have You Been?: Not quite, but close to a year, A YEAR, has passed since I last wrote an entry here. For anyone (if there is anyone) that comes here to check on a at all regular basis to see if I have updated, I am so sorry. I won't make any promises that I'm not sure of quite yet, but even though I've said this in the past, I will do my best to write here now much more often.

I've always gone in and out of times of lots of internet time, then lots off-line, and plenty of situations in between that too. Lately yes once again I've been getting back into the swing of things in my "online life" but this time around I have a very good reason for being absent for so long.

Back when I last wrote I had no idea as to what was really going on within my body and my mind. I had alluded to it in the last few posts, but basically I had been having these intense panic attacks and I suspected it was from one of my medications that can cause that type of thing when you'll been on it for awhile. So we were trying to find a solution, but really all along it was just my body's way of telling me I was REALLY sick and needed to do something about it.

I was in and out of the hospital for the month's of May and June. As time had gone on since last Christmas, especially since last January, I had been getting weaker and sicker and less functional with each passing day. But when you are in time periods such as this, it's really hard to notice. Not just for yourself, but for those around you I think. Five separate admissions it took to the hospital to get at the truth. I would go in for a few days to a week or so, get sent home for at most 2 days because by the 2nd day we were calling 911 again to get me rushed to the hospital, where the stay a week, get out for 2 days pattern would continue a couple times before they (the doctors) finally figured out that my sickness was not being caused by my weak kidney, but by a rare bacterial infection called MAI. Usually only people with HIV/AIDS get it because of their low immune systems, but for my situation I also have an induced very low immune system so this bacteria that most people can be exposed to and never know the difference, attacked my body and has yet to go away even now. It's extremely hard to get rid of, though it can improve with really strong antibiotics that I've been on since June. They are terrible by the way. My MAI has improved, but it is not gone and I get the impression they aren't really sure how to get rid of it fully. The whole experience of the back and forth to the hospital and the lack of a lot of things when it comes to Drs and such is much too annoying and long to get into here, but let's just say I am no longer going to any Jefferson Hospital doctors or the hospital itself except for my one kidney doctor that I see through dialysis not through the hospital. Ah yes, that was one side effect of being so sick. I had to go back on dialysis. They put me back on right away in May when I first went into the hospital because they were so sure the problem was the kidney. As it turned out, the MAI was hurting the kidney (and so much more) but now it's too late as they took away my kidney meds which will cause it to fail eventually. So I think it's kind of at that point now, though you never know as the previous summer proved.

I had to move back to NJ with my parents' so I could get near 24/7 care from my mom. She had to take Family Leave from work after just finally getting a full time position there. I got out of the hospital for the last time at the end of June. I spent the entire summer being very sick and mostly in NJ sitting on the couch watching TV or sleeping. I was SO weak. It also causes you to not be able to eat and to throw up a lot of what you do manage to get down. I know, gross, huh? I couldn't walk so well (and still can't walk great) so I had to use a wheelchair to go anywhere of distance or anything. I'm still using that but mainly only to go to and from dialysis because it can take so much out of you on top of my already weakened state it helps. Otherwise I'm walking around much better and doing much better now than ever, but I'm still far from better. While I could get up and down in an emergency I'd like to think, Dan still carries me up the stairs in our place (oh I moved back to Philly finally at the beginning of October) and he carries me down too when he's here but I can slowly make it down the steps if I have to. I suspect I could crawl up the steps if needed, but I can't get myself off the floor if I do that or if I happen to fall down or something. I can sometimes pull myself up, but sometimes I'm not strong enough for that either. I can't worry about building up my muscles again too much since the infection is still in my system and I would either just lose it again or more likely be unable to build it in the first place because my body has just no reserve to work with.

Now surrounding this bad thing in my life, there have been some good things. Concetta and I finally put together our plan for our bookstore and art gallery. We did lots of research, not to mention we'd been throwing the ideas for it around for a few years already. It became an official business in April and we got our space at the end of June. Obviously I'm leaving out a lot of details and just giving you the summary because well you certainly miss a lot in a year! :) We had to build out the space ourselves as part of the leasing deal. I will tell you, not the best option but it's a great location - up and coming in the Northern Liberties section of Philadelphia which is where we thought we'd end up. My dad has been in the plumbing and heating business for a long time now, but unfortuantaly he can only work on official things in NJ. He was able to get us some good deals on people he knew that could work in PA and of course he helped a lot where he could for the minor things. Still, it is very expensive to do this kind of project in Philadelphia and I think $40,000+ in construction costs later it is probably our biggest regret. And that number is from getting deals and discounts!! So when near half of your start up loan is taken by construction costs right off the bat, despite getting 4 months of free rent to help "offset" the cost, it is in no way near an equaling amount and so you just sort of have the deal with it and pay the price.

We are very happy with the way the space turned out though. Oh, I should probably explain a little more about what the business actually is!! It's called Amble Gallery & Books. It's a contemporary and urban art gallery and bookstore that also carries some handmade items and gifts (cards, figures, journals, etc). We have a different art show each month, with openings on each first Thursday of the month. We also will be holding other events later on once we are better setup. We opening officially to the public with our October show and have been going ever since. I love working there and having it. Unfortunately we found that we can't pay ourselves quite the way we need to at this time, but we are making sales and things are getting better as word spreads and time goes on. There is always a ton to do but I like it that way. I've always enjoyed the business side of organizing these types of things for some reason. So mainly I take care of the computer and software and the administrative stuff like our bank accounts and item inventory, etc.. I love it. Concetta has the experience and knows most of our artists that will be showing for the first year so she usually focuses on that and getting our store and gallery in good looking order. We balance out each other's skills well I think. It's been hard for me because there is a lot I can't do still because of being sick but we get along as we can for now and like I said I am getting better mostly as time goes on.

So that's been the biggest thing in my life for the last year. There is tons more that I'm sure I'm leaving out, but to be honest a good part of my entire year truly was spent laying on a couch somewhere, maybe watching TV, just trying to fell well enough to keep getting up to go to the bathroom. It was as sucky as it sounds, but as long as things are turning around I will try to let the bad stuff fade away into distant memory.

I have very weird sleeping times now. Sometimes I sleep 'normal' and then a lot of times I'm up the entire night or at least most of it. Tonight's case though involved me getting home from work a little after 8pm, eating dinner with Dan, and then falling asleep sometime in the 9pm hour which is crazy for me and waking up very confused at 1am, with Dan still awake and just about to go to bed. I went back to sleep somehow for just a little longer, but by 4am or so I was fully up for the day. I'm still far from a morning person, but I end up being awake before anybody because I start the 'day' in the middle of the night. I suppose it'll all balance out at some point though.

So that's about it for now. It's after 6am and today is a dialysis day so I try to get as much done as I can before 4pm when my mom comes to pick me up for it. Time to get ready for the Today Show, haha. I watch way too much daytime TV now! Maybe I'll wrap some presents today. I'm pretty much done my shopping - I bought EVERYTHING online this year basically. So many packages delivered to my parents' house, so many my mom has had to bring in and they are still coming, haha! We did get our tree the other day finally. Dan didn't put the lights on yet or anything, but I'm hoping we'll have that tackled before the weekend ends too. I work most of Saturday and part of Sunday at Amble, so I don't really have a weekend on the weekend. Mine sort of exists between Monday and Wednesday right now, even though two of those days are shortened by dialysis evenings. We'll always be closed on Mondays, but normally we'd be open 6 days a week. We just have shortened hours (Thurs-Sunday) right now because of the winter time though next week or so we'll be open more again for the drive of last minute holiday shopping. We are having our first sale on Saturday to try to make room for new book titles that we want to order too. That should be interesting.