I'm sorry I've been so sketchy at writing. It's just that usually I'm so tired and my brain is so fuzzed up that it's hard for me to keep a train of thought going, even during conversation. In addition to that, it seems like things are both not happening at all and yet so many things are happening that I don't have the gumption to write it out. Any feels I have these days I usually cry out in the tub, or into a pillow, or onto Corey's shoulder. (I've also decided, what's up with the aliases? It's hard for me to keep track of them now, and internet anonymity is really kinda not much of a thing these days unless you work really hard at it and I'm just not willing to put that much effort into it anymore.)

I've made some friends, new friends, and one of them drove me to the pain doc in LA yesterday. It was a fun experience… she's basically like a version of myself in 20 years, so we get on great. Anyway, the doc mentioned it last month, but this month he was really emphatic that he thinks I'm dealing with seronegative arthritis, which is arthritis that doesn't show up on blood tests. Next month I've got an appointment in Tucson at the University with the rheumatology department there for a diagnosis. I was thinking EDSH, maybe, but now there's this question of arthritis… maybe it's both? Who knows, really. Maybe it's "just" hypermobility syndrome and also arthritis. I dunno. Whatever the case, I think things are finally starting to get figured out, and that's a relief.

I am so tired of trying to wrangle all of these doctors and appointments and trying to get all of the doctors to work together and communicate and send the dang files when they're supposed to and, just… my goodness. So done.

But I have a "vacation" of sorts coming up in a few days. My sister in law is coming to pick me up and I'm going to spend the better part of a week in Tucson with her and an artist friend, just kicking back and enjoying the sights and being a tourist. Both of them have a clear grasp of my health status and my limitations, and I'm so very grateful for that. I wish I didn't have so many damn limitations, but it is what it is. I'm looking forward to a chance to go have fun, to be out and about and also have reliable rides the entire time, to more or less be catered to I guess? And the last time I took a trip that wasn't for a doctor's appointment was in March, when we went to the Renaissance Festival. Seriously.

Marriage. It's been strained in ways, because of our tight, tight finances. I was denied disability and I'm still working on finding an attorney to appeal it. I had a lead but that closed down today, so I have to keep searching. I only have 30 days. The stress has been hard on both of us, but it's also led us to be very, very honest with one another, to have some good talks, and we've had a lot of fun together as well. There are pros and cons both, as with all things. One reason I had been somewhat unhappy a while back is because I had fallen into that tempting trap of comparing us with others. First of all, we are a unique couple, and healthier than pretty much any other couple I know (neither of us could think of a healthy marriage that we could turn to for mentorship; isn't that horrifically sad?!), but more than that we are dealing with chronic illness and a terribly unique situation. There is no manual for this. We're making it up as we go. Sometimes it's rougher and tougher than others and I cry a lot and feel sad and lonely and unfulfilled, but those times seem to be further and farther between now, especially once I embraced the fact that we have to make our own journey and I have to look for the ways that Corey uniquely expresses his love toward me. He's not a writer or a poet or a very traditionally romantic guy. I'm not going to get grand gestures or sweet notes or thoughtful surprises. He will, however, drive me to and pick me up from a doctor's appointment on a day that he has called in sick (which he never) does because I am not well enough to drive myself any more except on very rare, desperate occasions. He got up earlier than he wanted, while sick, and drove me to the appointment and picked me up, all while not feeling good. THAT, ladies and gentlemen, is love. So, stuff like that. I would love flowers, sure, and he likes to get them for me, but we can't afford that right now. We are having an alarmingly difficult time with basic bills and food, as hard as that is to admit. He is kind of depending on the hope of my getting disability to help us pull through in the long run, but I found out today that I just don't qualify at all for SSDI. I didn't work long enough and recently enough to get credit for that. I really hope I can get SSI, because it's our last hope, really. If I can't get that, I don't know what we're going to do. I just don't. I've been making some crafts in the hope of selling them, but the price for a stall at the swap meets is outrageous! I'm still hoping to sell them, though. That may help a bit on the finance side, but if nothing else then at least it's been a good outlet for me.

There's a lot of feeling overwhelmed for me these days; overwhelmed with feeling lousy almost every second of the day, overwhelmed with juggling doctor's visits and records and lab tests, overwhelmed with paying for all of this doctor stuff, overwhelmed with trying to "be sick right" and eat the right things and take the right supplements and meds and exercise and do everything that I can to keep my health up so it's not my fault, overwhelmed with sorrow that my financially stable husband is now struggling to handle basic life costs because his wife is so high maintenance to just keep alive and semi-functioning.

But, you know, there's also good stuff. There's always good stuff. Life isn't entirely bad, except when I'm going through a particularly bad depression slump, lol. I suppose that instead of feeling pressured to write about everything going on at the moment maybe I should just pop in and write little blurbs here and there, like small anecdotes that give a picture into my actual life rather than just my thought and emotional life. Hell, maybe one of these days I'll actually put together a coherent blog post on a topic, rather than just rambling! Perhaps not. I don't think that's the type of blogger I am, at least not on this blog. This one is for me to come and feeling-vomit and walk away feeling a bit lighter.

Speaking of lighter… I am gaining weight, so much weight, and I can't seem to stop it. I am revising my diet, exercising more (yes, even with the pain!!), trying to eat less… and still I've gained 18 lbs in the last month?! What the hell is that?!?! I don't know what's wrong, I don't' know why this is happening, but I dislike it. I hate it. I don't want to be fat, but I am. Today, though, I looked in the mirror after dressing and I thought to myself, "I am not going to try to look like a skinny girl because I'm not; I'm a big girl. I am a big girl, but I'm still pretty." And I actually felt that, I believed it, and it was a nice place to be mentally.

The cats are going stir crazy because I've kept them inside for the past half a weekish, due to Halloween. People do awful stuff to animals around this time, and I want them to be safe. I have a very strong protective urge that centers around those in my "circle", including my family, pets, friends. I guess I just feel the need to take care of people. It's been bred into me since I was a young'un, living in such unpredictable, dysfunctional environments and being the oldest it made me the caretaker of the kids… and of the adults, after a fashion. That urge has never died, though it has matured, become tempered a bit and and much healthier. Learning about boundaries and implementing them in my life has made a huge honkin' difference, though I know I still have stuff to learn in regards to that. As far as the cats go, they get their freedom tomorrow. As for me, freedom comes in a couple of days, Monday specifically. Unfortunately, the morning I leave is the day of the afternoon that Corey comes home. We're gonna miss each other like ships in the night and I won't see him for over a week by the time I get back, which is gonna be kind of a bummer, but it'll be great to see him when I get back.

And that is a slice of my life as it lays right now.

2 thoughts:

  • Anonymous | November 1, 2014 at 9:12 AM

    Oh, Chickadee. You are a hot mess. Emphasis on Hot. Also, Yay, docs, appointments, progress, and being good places mentally. I love you.

  • Cassandra | November 2, 2014 at 3:51 AM

    "Hot mess", fyi and according to this person, is defined as "A total mess with tensions running high but you're still going and still fabulous". That's pretty cool. I'll accept that.

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