Saturday, April 30, 2011
My trip to the doctor Thursday confirmed that my lupus is indeed rearing its ugly head and having a wild rumpus in my body. It appears my kidneys, lungs, eyes, and possibly BRAIN are under attack. I really didn't think my brain could be affected, but the truth is I have been having some pretty scary episodes in which I find myself confused, unable to think clearly, remember conversations, and unable to locate things (like my vehicle at Walmart last week). My doctor has ordered a CT scan of my brain to see what's going on in there since I have a history of TIAs. SO in addition to my crippling insomnia, I also am experiencing vision loss and excruciating flank pain. Oh and did I mention my joints are killing me and my hands, legs and face keep swelling up? My short term memory prevents me from remembering if I already mentioned that I look like the Michelin Man unless I stay in bed all day. So now I have to go back to my nephrologist, ophthalmologist, pulmonologist, and neurologist to try to get this under control. My kidneys hurt so bad that I very nearly drove myself to the ER this morning at 4:00. I don't know what they could do for me, but this pain is becoming unbearable. My life is like a saga of medications, pain, exhaustion, and doctor appointments. So forgive me if I'm a little bitchy and withdrawn for a while. It's driving me insane that my house is messy because I have a ten year old who can't seem to figure out how to put anything away and I've been too exhausted to clean. Usually my husband helps with that, but he has been working out of town for the past three weeks. I'm also still upset because the weekend before Easter my mom's dog (who practically lived at my house because we live on the same property) got hit by a car and I had to call the neighbor to come over and shoot him because he was suffering and couldn't be transported to a vet in his condition. I really love animals and even though that dog was a royal pain in my ass, I loved the big dummy. It feels weird everytime I walk outside and he isn't on my porch. Well, I'm getting really sleepy because I barely slept at all because of the pain last night, so I am going to spare you from any further complaining on my part (for now). I'm going to try to catch a few zzz's because I really need to go to town today to get the supplies I need for my youth group's Mother's Day projects we are making Sunday night. And if I feel like I can stay awake long enough I really want to go see Water For Elephants because I recently read the book and it was AWESOME. But my narcolepsy makes going to the movies usually end up being an expensive, uncomfortable nap. :-P
Thursday, April 28, 2011
I admit I have been avoiding this blog like the plague. I think for any blog to be interesting and helpful, it needs to be honest, wherein lies my problem. Being raised to be the sweet, polite, independent, southern lady that I am expected to be presents a problem when it's time for me to get really honest about my feelings--especially if those feelings might make others uncomfortable or expose a vulnerability in myself that makes me look weak or as if I might inconvenience others by needing support or assistance from them. So to avoid the awkwardness, shame, or potential to be dishonest so as not to be inconvenient, I just avoid everyone. I don't answer the phone, I don't leave my house, I limit social networking contact to surface "Hellos" and then people become offended thinking I am being a snob. Anyone who knows me well, knows I am far from snobbish. The real problem is that I am depressed. Really, really depressed. I thought I was happy to get my lupus diagnosis, because at first it was such a relief just to have an answer for the years of illness. But now as I move further from my diagnosis date, the less happy I am to have lupus as the answer. I keep desperately trying to find other things that could be causing my flare-up symptoms, because maybe I don't really have lupus. Maybe I won't really get sick everytime I really get active on a wekend with my daughter and niece and nephews--but then I do. And I read through my lupus literature and books and whatever symptom I am experiencing is spelled out right there in plain English, flying right in the face of my denial. I am experiencing such depression over being sick so often, that it's getting harder and harder for me to paste on that southern charm smile and face the world and saying, "Fine, thank you." When people ask me how I am. I find myself crying a lot. I'm grieving over the life I worked so hard to build for myself only to have it stolen away by lupus. I'm grieving over not being able to be the wife and mom that I expect myself to be. I don't even want to know how many years of therapy my daughter is going to need for having to grow up with a mom who is constantly sick and in pain. My once spotless house is getting messier by the day and I can't keep up with the housework. Just taking showers and getting to all my doctor appointments is exhausting, not to mention trying to get Katie to all her after school activities. I thought I was starting to feel better a few weeks ago and then, BAM my kidneys are spilling protein like crazy, legs swelling like balloons, my pain levels are through the roof, the inflammation in my eyes is causing vision issues, my fatigue could put Sleeping Beauty to shame, and now I'm getting fluid on my lungs to boot. So then starts the steroid therapy--like I'm not fat enough already. I have another appointment tomorrow (well actually later today since it's like 2:15 AM) to see what the doctor wants to do with me since the steroids aren't doing anything but making me eat, which is a little of a plus because I have been too nauseated to even smell food for the past several weeks. I feel so guilty to be depressed when I know people out there have it much worse than I can even imagine, but I can't exactly control being depressed. I am also getting scared because I feel like I am starting to lose my mind. I can't ever remember anything that isn't written down. I ask the same questions repeatedly throughout the day and don't remember having already asked them until someone points it out. I forget entire conversations sometimes. Last Saturday I went to Walmart, which was a huge exhausting mistake, but I didn't have anyone who could help me so I had to just do it myself. By the time I got out of the store, I was in pain, sweaty, and exhausted and here comes the kicker...I couldn't find my car. I had no clue where it was and as panic set in, I couldn't even remember what the hell it looks like! I spent a half hour wandering up and down the parking lot aisles pressing the panic button on my keychain trying to set off the alarm on my car so I could locate it. I have never had that happen! It was a terrifying and embarrassing experience and now I'm scared to go anywhere by myself because who knows what I might forget next time?! Since my husband works out of state, I really have no choice but to do things and go places by myself because my mom and my sister are way too busy with their lives to help me out. I came home and read my books about lupus and apparantly my memory problem is also caused by lupus. There are entire chapters dedicated to that. The more I'm learning to live with lupus, the more powerless I feel. I don't like to feel like I'm at the mercy of anything or anyone and yet here I am, with a disease that is controlling my life and I am unable to work to even provide for myself and my daughter because of it. This is not the life I planned. I want to still be able to use my education, talents, and passions to do SOMETHING that matters and preferably makes money. But for now, I guess I'll just have to settle for being extremely depressed and hiding from the world so I don't have to burden them with my misery. No one wants to hang out with a "Debbie-Downer."