How I live

It's not pretty. I bought this house 20 years ago, when I was single. It was built in 1941, 2 bedrooms, 1 bath on the main floor. The basement is finished in a very 1970's style with fake panelling, shag carpet, a wet bar and even a dance floor. It was a fine house for me, then for me and Charlie and still fine even when we had the two girls. Before Jack came home, Charlie was supposed to clean out the downstairs, which had become a dumping ground of sorts, so the large family room and bedroom could be the kids' territory and we'd hoped to put a bathroom in down there too. Never happened. This has been 4 years and he's essentially done nothing. So we all live, with 2 cats and 2 dogs, in less than 1000 square feet. Now this might be okay with another family, but all 5 of us are not naturally tidy people. Although the rest of them might disagree, I am probably to most naturally tidy person - we all agree though that I am the one that becomes the most upset at the mess. A typically week for us is like this: Monday, Tuesday - Charlie goes to work early. I get the kids up and dressed and to school. I work until right before 5:00 and then run to pick them up. Once we are home, dinner and a little homework and it's time for bed. While they are eating, homeworking and watching TV, I usually do dishes, clean up, etc. Charlie comes home around 8:00 in the evening usually. He doesn't feel he should have to do anything around the house on the days that he works, so he makes himself some food and sits on the bed. Weds: same routine in the morning, but Charlie works 1/2 day so picks up the kids right after school. Usually they come home, the kids do nothing except play video games and watch TV, while eating massive quantities of food. Charlie sleeps. I work late and usually go to the store after I get off. This requires me to haul in all the groceries by myself though I can usually get one of the kids to help put it away. Generally when I get home I find dinner and homework not done, and no housework either. So it's on to that for a while. Wednesday is a night I take Enbrel shots and by then I am usually in pain and limping. Charlie and the kids will watch me from wherever they are, but don't often help. Thurs: Charlie takes them to school and picks them up. I go to work, work late, run any errands and come home to the same thing. Oh, and I forgot to mention, no matter what I say, do, scream, anything, they will not put away their garbage.. Garbage, garbage, garbage, it's everywhere. Food wrappers. Dishes. Silverware. Papers and on and on. All over the living room and dining room and everywhere else. Fri: See Thursay, with the addition that I have to take an MTX shot. This one doesn't hurt going in but the next day I am down for the count due to crushing fatigue. As Charlie so nicely put it "You essentially poison yourself every Friday night so you aren't good for much on Saturday." Yep. Today I spent the day in bed watching TV, reading and dozing. There was a block party outside our door, I didn't go. Charlie did go to the grocery store and get stuff for the party, which I appreciated. The problem with Charlie and stores is that he is a very bad shopper. He can spend more money on more stuff and still come home with nothing to eat. It's pretty amazing. And stupid. So around 8:00 or so when everyone is tired, Bethany finds she has a sore on her back - I still don't understand how exactly it happened, but part of her belt rubbsed a big raw spot on her back. So we are trying to clean it, put antibiotic on it and bandage it and she will not stop screaming. There will be another whole post someday about Bethany's terrors...of bugs...of sores...of medicine and on and on. Charlie got mad and somewhat out of control and tried to hold her down...she screamed more and that was that - she has no medicine on it now and a bandaid that doesn't cover the spot. He decided he had to go to bed (which he does) and so I came into the living room to get the kids to sleep (again the reason why they sleep on the living floor will have to be another blog post). And I was treated to a 45-minute harangue from Annie about what a horrible mother I am. I finally stopped talking after she reduced me to tears. Everyone is asleep and I amd on the computer and it's after midnight. And I am wondering how I am going to do this. The vast majority of my energy goes to work. And I have to work - I pay most of the bills, all the health insurance, etc. I come home to a mess every night and no help. And no support. And no sympathy when I can't move my fingers or walk straight or get up out of a chair without groaning. And that makes me feel like such a wimp to write, not to mention a poor and ineffective parent. Tears want to come back now, so off to bed....

I don't know these answers

Who, What, When, Where, Why? I remember that from 9th grade journalism class. But I don't know all the answers, really, but will take a stab at them The Who: That would be me, diagnosed formally with Sero-Negative Erosive Rheumatoid Arthritis about 9 months ago. Nearly 54 years old, married at age 39 for the first time. Became a mother at age 47. Overweight most of my live and currently in the morbidly obese category. Insurance supervisor, a job I love and hate by turns. Live in a house I bought before getting married to Charlie in 1998. I used to do a lot to it all by myself, painting, putting up fencing, gardening, etc, but somehow that all seems to be going downhill and now I feel like we live in the worst house on the block. I think that's a subject for another post though. Another couple of Whos in this story: My Mom. She is 81, has so many health problems that it's hard to believe she is upright and functioning-that's something she struggles with every day. She has had many diagnoses, multiple failed back surgeries, a digestive system that collapsed after years on NSAIDS that she took for her lupus, fibro, RA, MCTD - just a few of the many auto-immune diagnoses she has been given. She potentially has an incredibly rare neuro disease (she is currently convinced this is the cause of it all, but it doesn't seem to completely fit either). Anyway, she has a lot of difficulty getting around, but she and my dad (who has health issues of his own and has never exactly been someone who helps around the house) still live in the big old Victorian house we grew up in. Three stories plus attic. Steep stairs. Constant upkeep. Gorgeous gardens. Both the house and the garden have been on many tours. Back to the RA Who - Mom's cousin Carol Lou, formally dx'd with RA at an early age. A grandfather who died at a fairly young age of some kind of muscle/arthritis/something or other disease. My sister who has neurological problems. And who know who else. So clearly there is something in the family. The What for me is the diagnosis above. It means I don't test positive for the Rheumatoid Factor which a fairly high percentage of people don't. But I have a high Sed rate, which measures inflammation in the body, classic symptoms of pain, stiffness and swelling in my joints (hands and feet the worse, but now appearing in other fun places like hips). I also have some evidence of bone erosion on x-ray. Thus, the RA diagnosis. The When: this a good question because the symtoms have been creeping up on me for a long time. At some future point I will write a post about my adventures with an uncaring PCP, a great neuro and finally my amazing rheumy. But for now the When is probably this all started a few years ago when I started having pain in the fingers and toes and stiffness in the morning and when getting up from sitting for a while. I realized a while back that for at least the last couple of years, I have been choosing utensils with smooth handles only because the ones with designs hurt my hands....but I never thought about what that might mean. The Why? Oh poor me, why me, what did I do to deserve this? These are BS questions. Everybody gets something. With my family history this was a likely thing for me. I also firmly believe that the amount of stress I've had over the last few years (adopting 3 older kids, financial stuff, marital adjustments, a very stress-full job), probably brought it on faster or stronger or something. But I was going to get it at some point. The thing is now there are a lot more treatments available than in the prior generation's deay. My rheumy is committed to finding the right one (okay, it's not a given that there is a right one but there are lots to try). So there are the Five Ws of my RA. I feel better writing this and as I was typing I thought of a lot of other topics...my providers, the medicine, the support and lack of support, work and on and on. Most likely of very little interest to anyone but me, but I am going to write it all down anyway!

Why am I blogging again?

I used to blog. Quite often in fact. I started to do this one rainy afternoon when my daughters were home sick, I was home bored and it seemed like something that would give me a break between bouts of barfing and calming down the girls. That first blog was all about the kids. It was "Two Girls From Guangdong" because both my girls were adopted from Guangdong Province in China, Annie in 2005 at age 4 1/2, and Bethany in 2007 at age 4 1/2. My husband Charlie and I thought we were done adopting (to be more accurate, he KNEW we were done and I HOPED we weren't done), when a little boy on our adoption agency's list of children suddenly needed a family. Within weeks of coming home with Bethany, we had started the paperwork for Jack. He was just over 5 when he came home in November 2008, 3 years and 1 day after we came home with Annie. Then we were done. House too small, bank account too small, stores of parental energy too small. So that first blog was about the girls, then our journey to get Jack and continued on with the adventures of a couple becoming first time parents at age 47 and raising three energetic kids. Gradually I stopped posting...starting putting more stuff on Facebook in the limited time I had between a more than full-time job and home responsibilities. So now I am blogging again, but on a new subject, though the kids and the job and the house and our life are still at the heart of it all. Now, though, things in my life are done through and in spite of the pain and difficulties caused by a chronic illness. In my case... rheumatiod arthritis. so this is place for me to write what's going on with the RA and what I am thinking about and how the treatment is going (or not going). The immediate inspiration for this was a bunch of blogs I looked at last night-they were declared the best blogs of 2012 for RA. Reading them made me realize I missed writing, even if this is really just for myself. Wow, there are a lot of me and my and I in this post.....I think there will be a lot of editing and re-editing as this goes along