Since nobody actually reads this blog I guess I can really consider it a diary, lol. Except for the (according to my stats) occasional Russian citizen (I thank you and promise I'm not a typical example of your average American). So I'm going to divulge a bit of information that I've shared with absolutely no one, not even my doctor yet. And not my doctor because she ordered an MRI many months ago and I had a bit of a claustrophobia issue (I practically clawed my way out of the machine, hysterical) and had to reschedule. Which I haven't done yet because at the time of the MRI debacle I hadn't fully realized that I was developing a full blown anxiety disorder. And although I'm being treated with semi magic pills for that, and was given a special magic pill to take for the MRI, the thought of going into that tube again freaks me out. I can't even handle the idea of that little cage thing they put over your face. That was actually when I started to panic last time. And so, until I can pluck up the courage to reschedule (yes, I'll do it soon, I know it needs to be done) and then get the energy to walk down there (I'm so tired lately) there is no point in telling my doctor my secret because she would say "Well, we really do need a good look at your brain, my dear." And then she'd give me that look like she's disappointed in me. So until then I will keep it to myself. Well, except for putting it out here on the internet. Which will largely go unnoticed. But it is kind of like gifts. When I buy a gift for someone it must be last minute because otherwise I can't wait and keep quiet until they open it, it drives me crazy. I want to see them open it and be happy so I badger them with hints and basically make gift getting for others an absolute nightmare because I am terrible at secrets. Now, I'll keep them, if I give you my word I'll keep it, but you can just be sure it will drive me nuts. So here is my secret: I have begun to develop small little signs that my lupus has moved into the neurological arena. When they first diagnosed me with lupus after my son was born I was shocked. The only thing I knew about lupus was what I'd seen in that movie Gross Anatomy and that wasn't good! But the doctor said that mine was mostly causing a lot of inflammation and that with a healthy diet, exercise, I'd be fine. I believed him and so for years I just kind of went on with life. As we get older we all get aches and pains, right? By the time I was really sick and in a lot of pain and found a good doctor my SED rate was over 100. It still hovers around 40, no matter what I do. And for several years it has mostly been joint pain and mild arthritis issues, some very mild kidney issues, just general icky feeling, a constant feeling of being tired and a LOT of weight gain from the Prednisone. And I know that I've been lucky, lots of women have suffered far worse with their lupus. But lately I've been having other symptoms and I know that although my life seems to be at a standstill (in Crazy Town, no less) my lupus is marching forward at a slow but steady pace. I just had to put it out there. I could never tell my son, he has enough to deal with. Besides, I just have one more year of his childhood and then he is officially an adult. Some nights I weep for all the things I wish I could give him. And not really things, experiences. Without a car we can't even go to the grocery store together, one of us must always watch my daughter. We haven't been out together to do anything other than walking to doctor appointments or the hospital in about four years. So many things I wanted to do with him, so much lost time. And really, he is such an extraordinary young man, he deserves the best. But in a year and one month he'll be an adult and rush off to live his life his way. My daughter will probably be gone by then, her health has been fading the last year or so and in the last six months she has been almost constantly ill. Once they are both gone I wonder sometimes if I will just . . . fade away? I have two friends, and they have busy lives of their own. So I wonder if one day one of them would say to themselves "Hmm. Didn't I used to know this one kind of annoying woman named . . . ?" and then the moment would pass and I'd find myself just a wisp of nothingness.
When my daughter was diagnosed nearly 21 years ago, I didn't understand what this life would be. When my husband left us, I did, and I made a choice. I didn't realize we'd end up living below the poverty level, but I knew it would be tough and that my life would become very small. I made that choice, to keep my daughter with me so that she would always be in a loving home, always know comfort and kind voices, never be afraid (except for lately we've had to go to the doctor for a lot of antibiotic shots and she'd beginning to flinch when she hears the nurse, poor thing). Point is, I knew that my circle would grow smaller and smaller, just not this small. My son, however, is finally starting to widen his circle, and that makes me excited. I want so much for him. I don't care if he makes lots of money, or becomes "successful" in some sort of career, I just want him to be happy, to be kind, to always be compassionate, charitable, and always open minded and fair. Rich would be nice, mind you. I'd like to eventually end up in a place as nice as the one Shawn was in in that one episode of Psych - although I'm still holding out for Star Trek type medical developments, lol.
Wow, I'm rambling. This train is just going on and on today isn't it? No logical stops, sorry. I think the conductor is taking a nap.
My point is, my anxiety is high, my lupus is getting a little rowdy, my daughter is very sick, my son is moody, I'm turning 42 in a few days and like most years the day will pass pretty much unnoticed even though I have this secret hope (okay, not secret now but who in Russia is going to tell?) that someone would one day make an actual big deal of my birthday. You know, cake, ice cream, a present, a hug (silly, I know). I've a few bills I can't pay this month and Christmas is nearly here. And then New Years, which always makes me sad anyway and people will insist on singing Auld Lang Syne which ALWAYS makes me bawl like a baby. Doesn't anyone else realize that song is SAD? How the heck did it become the song we sing to bring in a hopeful new year???
Wow, rambling again. Okay, to a point. Well . . . I don't have a point. I'm writing till the Goody's Headache Powder kicks in and my head hurts a little less. Okay, point. Hmmm. Well, I guess in the end my point is that God is here. Even though my life has gotten very small, even though I'm tired, sad, anxious, hurting physically and emotionally, even though it seems I've been forgotten, God really is still here. The other day when something terrible happened and I was crying a lovely friend told me that no matter what, God loves me. Even if my circle is so small it becomes a black hole, and I fade away, God still loves me. Even if another year passes and no one notices. Even if someone does something terrible to me and no one stands up for me and says "Hey, you can't hurt my friend like that!" Even if my son is almost out of his boyhood and I rarely catch those little glimpses of my baby anymore. Even if my daughter has only a little while left with us. Even if . . . oh, a lot of things. Sometimes, we need to come to the understanding that if all we have is the love of God, we have enough. If we have the love of God, we have a cup that is overflowing. So I'll stop my silly rambling and leave you with this:
Romans 8:39 . . . neither height, nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.
And just how much love is that?
Ephesians 3:18 . . . may have power, together will all the saints, to grasp how wide and long and high and deep is the love of Christ.
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