Procrastination is my middle name.

First the shameless and gratuitous display of the cutest baby I know and the new mom that I am so very proud of.










I kept telling myself that I would write again a little later.....apparently, a little later is over a month for me. Things have been busy in my medically dominated life. I have had 3 treatments in the drug trial. I get very sleepy for a day or two after the treatment but I don't think I can tell any difference yet. Only time will tell.

I took Sinfully Chocolate Brownies to the the staff at the clinic for my last treatment. Working in a doctor's office, I know that the best afternoon pick me up in the world for an office of estrogen is chocolate. They are all very nice, but it never hurts to butter up the ones that are starting an IV in your arm.:>

I've had a deja vu epiphany, maybe more of a recurring epiphany, maybe I just like the word epiphany. A friend sent me a slide show presentation of Erma Bombeck's words on "If I Had My Life to Live Over "at http://www.andiesisle.com/ifihadmylifetoliveover.hs.htm

It is so easy to get lost in real life and forget the important things. Sometimes, despite my best efforts, I get caught up in the pain and with the medications and doctor's visits that can easily dominate my life. Erma has always been my hero. When my mom first got one of her books, we made her go read in the other end of the house because she was laughing so hard, we could hear the TV. When I got married and had kids, her books took on special meaning to me. They were not just amusing anecdotes they were a road map of how to squeeze enjoyment out of any family situation.

As I've mentioned, our family creed would read: We don't just embrace insanity, we feel it up, French kiss it and buy it a drink. Life is so much better finding the giggles of a situation, no matter how dire. We kind of look upon it as a challenge, one of us is bound to find the humor in any situation. The trick is not to get caught giggling at an inappropriate time in front of the staid and dour masses. This trait makes our family like a club, outsiders envy our rapport but they have no idea that our collective sanity was forfeited long ago.

If you think I flunk tests, you should meet my friend, Linda, she flunked out of hospice...she's my hero.

It's never good to get a call from your doctors office on a Sunday and it is usually never good to flunk lab tests.....unless it's me. Rhonda, the nurse in charge of the LymphoStat-B drug trials at my Rheumatologist's, called this afternoon to let me know that I had been accepted into the test group. Apparently I flunked enough of my lab tests to show that my lupus is active enough to be included. I am going to go to Tulsa on Tuesday to take the first treatment. Ironically, yesterday I had one of the best days in a long time. So good, that I called my mom to tell her I was feeling normal, that gave her a chuckle. Normal is such a subjective term and boy can we be subjective in my family.

RJ's first day in Iowa, "Where the he** am I? I went to sleep in Oklahoma!"

35hrs 51min 23sec...Okay, maybe I've noticed how long my favorite firstborn daughter, grandson and son-in-law have been gone. I can't go cold turkey, we talked 4 times today and have exchanged picture messages on our cell phones. Of course then I had to talk to my mom and sister each time to update them and I forwarded the picture messages on to everyone I could think of.

Empty nest is a bummer and I still have a chick at home. By the time my favorite youngest daughter leaves for college next year, I will have been a mom with a child at home for 24 years. That is more than half my lifetime. Actually, I think I have done pretty well, no big crying jags, but I did make my husband change the channel on the tv when he stopped channel surfing to watch Cold Mountain. It was at the part where soldiers raided a farm and pulled a young mother and her baby out of the house and laid the baby on the ground in the cold with out a blanket to die. THAT was not what I wanted to see yesterday.

Life's little ironies can take on a life of their own, like the time that we went to Estes Park, Colorado. We stayed in an old hotel that was in the process of being renovated into condo's. It was halfway up the mountain looking across from another old hotel called The Stanley on the other side of the valley. I had read up on our vacation destination and knew that Stephen King had stayed at The Stanley at the end of the busy season and was so taken with the feeling of isolation that he penned The Shining. We were there between busy seasons too and were the only people staying in the entire hotel, even the innkeepers lived in a separate house. I have never been big on sleeping so after everyone went to bed, I stayed up to enjoy the peace and quiet after several hours in a small car with two small children. My plan was to read and watch the news and relax. A local story caught my attention about a man who 20 years before, had killed some campers in the area and had just escaped from prison......Turning the tv off, I sat in the quiet and noticed something that I hadn't before....this building made a lot of noise. The wind whistled outside, there were creaks and thumps and I, being of sound mind, turned on every light in the place and sat across the room from the windows so I could watch them and the door. This wasn't the first or the last time that I stood watch because of real or imagined case of the 'fraidies.

If you have to spend the night in ER, I'm your girl, if you are up all night, having a nervous breakdown or have a child that is sick, I'm your girl....if you need someone up at 7am to go somewhere with you....call someone who cares.:> It's not that I am a night person by default, I truly enjoy from 10pm to 4am. I can be barely dragging through the day but come 10:00pm and I am wide awake.

RJ's Adventure is about to begin and I am not going to cry...yeah right.

I've promised myself that I won't cry, it would be selfish. I know that they will be just fine. I did it, I lived in Europe, Grand Prairie, Texas and Kansas City, all hours away from family. I have even greater faith in my daughter and her husband, that they will handle every speed bump that life throws at them. Lil' Pumpkin is spending the night with us, while his parents pack up 2 years of marriage. Not an easy job but especially difficult since they have to divide it between their new and hopefully few months in Iowa and the rest of their household that will go into storage here. I hate to go to sleep and miss a minute of him.

Imagine 2 cats, one Irish Setter puppy and a baby in an SUV for 10 hours...Adventure is the only word for it.




Gunner is going to be a great friend for RJ,once he grows into his feet. Right now he is all legs and about as graceful as a giraffe on ice, but he is a bundle of love.



Cricket, the Tortie and Kona Bean are uniquely qualified to raise RJ, they already love his mom and they are training Gunner to be tolerable. They say that people worshiped cats in ancient times. The people forgot but the cats never did.

The hardest years of my life were in college and I couldn't have a pet. My little fighting fish, Arthur, was beautiful and I did talk to him, but he didn't have much of a cuddle factor. I picked up a lot of strays and ended up keeping an Irish Setter that I named Cassie. She was the gentlest dog I have ever known. Kelci doesn't remember her but Cassie was her first guardian angel.

Smother Mother

My skills as a Smother Mother are about to be tested. My oldest daughter, Kelci, is leaving next week, with MY grandson to join her husband in Iowa, while he works for a couple of months. I haven't even got a leg to stand on. Her dad won a scholarship to study architecture in Europe for 7 months. We left when she was 8 months old and came back the night before Thanksgiving when she was 15 months old. It was in 1985 and terrorism was happening all over Europe. We were at places that blew up within 2 days of us being there, three different times. We arrived in Rome right after the Achilles Lauro had been hijacked the Italian government had collapsed. There were soldiers with machine guns at intersections and when my ex asked one for directions, I knew it was time to go home to Oklahoma....Yep, putting her grandparents through that kind of torture is really coming back to haunt me.

We did get both sets of grandparents to come over and visit us. There is nothing like strolling through the red light district in Amsterdam,with your in-laws. Below is Kelci and me in St.Mark's Square, Venice, Italy, 1985.

RJ spent the morning with me, the afternoon with his Great-Grandma Renee then the evening with me while his mother was taking some engagement pictures for some friends. Grandpa Ed walked by and started talking to him and RJ grabbed his finger in delight at the sound of a male voice and the comfort that there was still testosterone in the world. Being the first boy in 3 generations is a lot of pressure for the little guy, I think he is in danger of estrogen toxicity.

Hannah and Jason's engagement pictures turned out beautiful. Kelci is spreading her wings as a photographer and soaring.

Heart attack and roving tumors

The other night I couldn't sleep and finally gave in and took a sleeping pill about three in the morning. My husband gets up at six to get ready for work and that morning he wasn't feeling well and his left hand and arm was numb. He woke me to ask what I thought he should do and in my head I told him I had just taken a sleeping pill, but apparently all that I did tell him was to call the doctor. I do vaguely remember him asking me to drive him to the hospital but since he works at the hospital, I assumed he just wanted a ride to work and told him to have our youngest daughter take him. In my head once again,I explained that I could not drive with Ambien in my system.....Ambien makes me do a lot of things, once we found a half eaten ice cream bar by the printer...but that is another story.

How my husband,Ed, tells the story is that he woke up not feeling well and his arm and hand were numb and he was worried about a heart attack. He woke me up to ask me what to do, because I am the reluctant expert of all things medical in this family. I just sleepily told him to call the doctor, so he called into work to tell them that he wouldn't be in. He called the doctor after they got to the office and they said they would ask the doctor and call him back. All the while I slept blissfully on. At some point he became more concerned and wanted me to take him to the hospital. He was dying and his spouse did not give a care in the world. He got fed up and drove himself to the hospital and worked, until the doctor's office called him back with an appointment.

I have always teased him about his tumor that migrates. Every time he has a pain, he worries that it is a tumor. He is diabetic and has arthritis and the other various aches and pains of being sixty, so pains occur often, in numerous places.

Turns out he has a pinched nerve in his neck and needs to take muscle relaxers to treat it. He now knows that I do give a care, I just can't articulate that caring attitude if I have recently taken an Ambien.

I love him, but I can't work with him.

I love my husband. After my first marriage turned toxic, I was not looking to get married again. But then I met my best friend. He wrote to me first, the good old fashioned way to court,then he chuckled in that deep voice on the phone. I used to make him stay on the line until he feel asleep, just so I could hear him talk. We have so much in common,he's a chef, I like to eat. He likes to buy bookshelves, I like to read, a lot. He loves my daughters and I love his sons. BUT, did I mention that he is an excellent chef, he knows everything and he can make spam taste good. Sometimes handyman chores are not his forte...

One Saturday discord crept up between us,he lost his listening ability and I lost my patience. It was supposed to be a simple job....they ALWAYS are. We bought a keypad for outside the garage door. So whenever the kids lose their keys....again. They can get into the house with out jumping the fence, reaching up through the doggies door to unlock the back door.

There was a large page of instructions, that I hasn't read yet, it was divided and he was only reading the left side which was looking for dip switches on the motor unit on the ceiling, to set the code for the keypad. After I climbed the ladder that was broke and duct taped together, I couldn't find the dip switches and when I asked him what the right side of the instructions said, he told me it was the Spanish instructions and I just needed to look again. I finally got the instructions away from him and the right side was alternate instructions if you had a model that didn't have dip switches. DUH! So then I pushed the quick learn code button and he read the codes and put them into the keypad....nothing was working. At this point I was threatening to come down the ladder and bop him upside his head. Instead, I hit the button, climbed down off the ladder to put in the codes but he insisted on reading them to me. Yet another recipe for disaster. We were both pretty frustrated by this point and couldn't dial a code correctly if our life depended on it.

Despite the mutual aggression that was evolving, love prevailed and no bodily harm was done. We worked out one last plan, I would take the instructions up the ladder with me, push the button, and read the codes to him while he put them in. Ta Da! Yet another household chore finished, and only after putting it off for several months and nearly coming to blows. I can hardly wait to take up the carpet in the living room and refinish the hardwood floors underneath....I'll keep you posted....I may need bail money. :>

Pictures of Love

Most all of the pictures you may see in my blog were taken by my oldest daughter. She got a digital camera for her birthday last September and has been clicking away ever since. Digital Photography is amazing, just a click and you can see what you have and a quick trip to the store or a computer and you can get prints within minutes. No smelly, expensive chemicals, paper, or trying to turn an apartment's only bathroom into a darkroom. Let me tell you, this was especially hard with a toddler and a husband who might want to use it too.

When I went to college, I majored in Medical Technology, I had a cousin with Cystic Fibrosis and I knew I wanted to do something to help. Caregiving and adopting strays was something that my mom taught by example. It seemed as natural as breathing, someone needed help, drop everything and pull out the stops to help. My other great determination was art, drawing, fiber arts, crafts, everything I saw I wanted to learn how to do. Yet another thing that I need a 12 step program for, the other being chocolate.:> Things changed after my second year of college, my dad passed away. He and his parents were my link to art. I found that when the emphasis in my life was science and caring for patients, I missed my art. So I changed my major to Photographic Journalism and carried my camera everywhere I went. I loved the instant gratification of photography as opposed to the drawing I had done up to that point.

Both of my daughters have good cameras and take great pictures, it is just another thread that binds us but it is one that I enjoy so very much.

Friends

Ever have someone that you just "click" with right from the start? I had just moved into a new house and a neighbor from across the street, came over and brought me a chocolate cake. Sounds ordinary, normal, even common courtesy. She was anything but those things. I had some misgivings when she stood up her one year old son on my kitchen floor and tapped him on the forehead and told him to go forth and walk. Oh my, I had heard stories about the Holy Rollers and this one had already tempted me with chocolate cake....I could see deprogramming in my future. Her little one promptly plopped on his little tush and she looked up and said, "That never works", I smiled back and jumped into that friendship with both feet. I knew she was my kind of gal. Melanie has been an angel, co-conspirator, bad influence, partner in crime and best friend to me ever since.

We perfected the "Opps, I HAVE to have milk for the morning, since the kids are asleep, lets leave our husbands to watch the kids and run to the store at 10 pm and get it". These trips often involved sharing Cheddar Bites from Sonic, which we ate there and left the trash, so that there would not be any evidence against us. When we heard on the news that pharmaceutical companies were taking the alcohol out of children's medicines, we read every label to find out which one's still had it and stocked up. We lived out in the country and a toddler with a bad cold during a snowstorm is not the time to take a stand against alcohol in children's medications. My daughters had a small tent that they played in, when the new wore off and they were no longer interested in it, Melanie and I hid in it so we could have a few moments of peace and quiet. Good times.

We saw each other through births, deaths and frenzied "clean before company comes". She said she could always tell when my mom was coming to visit because I opened every curtain in my house so I had the most light to see to clean. (My mother is known for wiping out the inside of the dryer and sweeping the bricks of the house before company came.) When one or both of us was PMS'ing, we learned to signal each other with our curtains, open meant we were up and ready for a call or visit, closed meant, we were still in bed, a child was sick or we were just b*tchy and needed some space.

She saw me through my first husband, a divorce and then later a second marriage. I could count on her to tell it to me straight. She was my port in the storm, listening to hours of frustration and hurt, encouraging me to stand up for myself and my daughters. She sent her husband over my first night alone to change my locks, she went to court with me and she even watched over my ex when he came to get his things, arranging for me to be out of the house and eating pizza with her pastor.

We live in different states and don't talk as often as we would like but we can pick up the conversation just like it was yesterday that we talked instead of months ago. If everyone had just one friend like that, the world would be a lot more fun and a lot more secure.

Whatever this little post tells you about her, is not near enough.

Lab Rat

I went to the Rheumatologist today. It was for Inclusion or Exclusion in a drug trial. Funny thing about Lupus, you want to fail some tests just so they can figure out what is wrong so it can be treated. When the first major test results came back that pointed to an auto-immune disorder, I called my mom to tell her that I had a positive ANA and therefore I wasn't crazy. She replied,"Honey, the test didn't say you weren't crazy."

I am pretty sure that I was responsible for the death of a tree today. The paperwork for this study took almost 3 hours to complete. The nurse took 5 vials of blood then she asked me to do as much as I could for the urine sample because they had a couple of tests to run on it. As usual, I overachieved, I overflowed the cup and had to pour some out.....ewww. I did feel quite proud of myself when I left the sample on the little table outside the restroom, it was brighter and bigger than anyone else's. Yes, I am easily amused, just ask anyone who knows me.

Now I wait until the lab results are in and a panel for the drug trial reviews my chart and decides if I am included or excluded. Never have I wanted to be "included" so much.

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Training Medical Staff

I hate having to train new medical staff. My usual plan is to get a doctor acclimated to my various aches and pains and quirks, then I bribe the office staff with chocolate so that when I call in desperate need of an office visit or meds, they put me at the top of the list, because they know when I call it's for a good reason. I went to a rheumatologist a couple of years ago after hearing him speak at a seminar on Lupus. I have up most faith in his knowledge and ability but he is very reserved and when I had an occasion to see a new lady doctor in his office, I felt better able to communicate with her, so I stayed with her for a couple of years. She received a grant to study and has just left the practice for a while, so I am back to training new staff.

I had an appointment yesterday with my original rheumy, it went very well. The most interesting thing was that he asked me if I would be interested in joining a level III drug trial. There has not been a new drug for Lupus in over 40 years. He said he put his patients who were at the worst stage of the disease into the first trial because they had tried everything else and needed a new course of treatment. Some of those patients went into remission and most are doing better. Remission, I have heard the word bandied about in Lupus forums and in literature about Lupus but I never considered it happening to me. I just seem to have gotten progressively worse, so the chance of feeling better and even the slight possibility of remission sounds like a plan to me.

And on a lighter note, to illustrate further the special relationship that we share in my family, above is a picture my mom just emailed me:

Lupus Sucks

I had this silly idea in my head that I could write about my life without dwelling on Lupus. Okay, it's not the only silly idea in my head, but let's just focus on one at a time. After all, I have Lupus, it doesn't have me. There is a lot more to me than just my Lupus, I do stained glass, I've lived in Europe, I've been a hospice volunteer and I have a wacky family whose motto could be "We don't just embrace insanity, we feel it up, French kiss it and buy it a drink."



I have tenaciously held onto the my overwhelming talent of make believe. I can of make myself believe that nothing is different, I know that I am still "me" inside no matter what.

But the most amazing things can blindside you from out of the blue and sometimes my responses are disproportionate to the event. I've learned that when I am using my cane, even 83 year old women will hold a door for me and I've learned to accept that gracefully. Then out of left field, as I was leaving the grocery store, a very sweet lady got back out of her car to offer her teenage son's help in lifting a case of bottled water from the bottom of my cart up into the trunk of my car. I said 'No thanks' so fast, I think she got whiplash just hearing it. I thanked her and assured her that it wasn't necessary. It was very thoughtful of them and I truly could have used the help but my pride spoke up before my brain even engaged. Admittedly, it is usually my mouth that engages before my brain, but I digress.

I know that I have many opportunities to educate people about Lupus and how chronic diseases affect our lives, just by using a cane. It's better than a sign, and it can double as a weapon. I was told buy a WWII veteran that it is better to poke than to swing, because it's harder for your victim to protect themselves. Ahh, digressing again....have I mentioned Lupus brain fog? It's real toss up as to whether the Lupus itself causes it or if it is the side effects of the medications used to treat Lupus. Some days, the word search puzzle in my head is a couple of levels above my ability.

Lupus is usually one of the "But you don't look sick" kind of illness, and because I don't look like I should be using a cane, I am asked all the time if I hurt my leg. I just tell them that I have Lupus and that it as annoyed the nerve endings in my back and hip and the cane helps me so much that I need less pain medication. More often than naught, they know someone else who has Lupus and ask if I mind explaining Lupus to them, because they really don't understand about it. I try to give them the Readers Digest version, when you have a chance at a willing audience, you don't want to lose their interest to boredom.

One of my favorite websites is called www.butyoudontlooksick.com . It was started by a young lady named Christine Miserandino, who has lupus. She wrote a great story about her illness called The Spoon Theory. It explained how I look at my life, better than I ever could. I made copies for family, friends and coworkers to read and watching the dawn of understanding come over their faces was amazing. But even better, is the link to the store that has t-shirts for people with chronic illnesses. A few of my personal favorites are: "I have Lupus, what's your excuse", "My disabling chronic disease is more real than your imaginary medical expertise" and last but not least, "The Predisone Makeover, a fat moody b*tch in one easy step". If I am going to be a walking public service announcement maybe I should get a shirt and be a billboard too.

Thank heavens for Ziplocks and Press and Seal

I'm up in Kansas City visiting the outlaws....oops, inlaws. It's been a great visit, my oldest stepson has new house and a new significant other and she is great....she laughs at my jokes, so I love her. My stepson is the happiest I have ever seen him. The brave girl hosted lunch for uncles, aunts, grandparents and cousins and did it all with a smile. One of the cousins, who is more like a son to my husband, stopped by on his way home on his honeymoon so we had two new girls to indoctrinate into this family of mostly boys. My husband, the chef, and his son did all the cooking while we ladies sat and chatted, then at dusk, all the guys went fishing and we ladies drank wine and ate chocolate for a couple hours and got to know each other. A perfect day.

We had a few interesting moments. Since the guys were cooking, THEY decided that the new significant other and I should drive 20 miles to go pick up Grandpa and his wife......my stepson, pulled up a map on Google and told us how to get there and we set out on our quest....no printout of the map, no written instructions or address, just us two girls with a vague idea of where we were headed. I was busy chatting instead of navigating and missed the turn off, so when I saw that we were almost to Warrensburg, we turned around and then found the turn off. It only added 40 miles to our trip. We swore each other to secrecy and I knew then that we will be great friends.

Then, I remembered Grandpa's retirement apartment building as being tall, like 7 stories....it is 3, but I did recognized it from a trip 3 years ago and we found them in the lobby. They were expecting my sister-in-law to pick them up and my father-in-law, like my husband, is very resistant to change, especially change in his plans. So I talked real fast and herded them out to the car and got them locked inside before they knew what hit 'em. But not before I introduced the new SO to them with the wrong name....decongestants are not my friend. I could have died.....so I played the disabled card and make a good case for lupus brain fog.

I'm sure they will all be talking about me for a long time.....I took a decongestant this morning so I was on fast forward and felt compelled to fill any silence with a story. I regaled them with stories of when I first met the boys, my daughter's colorful comments during delivery and then capped it off with short stories of the little old patients that I see at work.

Welcome to the family MICHELLE....(not Melissa....I had the M right:>)

Dinner was wonderful and they made so much food that we could barely fit the leftovers in the fridge. Thank heavens for ziplocks and Press and Seal.

RJ

Robert Jessen is named Robert after his daddy and Jessen is my daughter's PaPa CJ's middle name. I am feeling pretty proud of myself, I have posted twice and not raved on and on about my new grandson. He is perfect, although his mama thinks one ear looks different from the other. Only new parents who sit and stare at their newborn bundle of joy would notice that. They live out west of town in an old farmhouse with one TV station that comes in clear and no internet, the boonies. Their air conditioner could not keep up with the 100+ heat, so they came in to spend the night with us. Yea! I need to pay of those air conditioning gremlins that I hired. So tonight..... I got to hold him and cuddle him and squeeze him tight.

RJ arrived about 2 weeks early. Being my daughter's first baby, coupled with the fact that I was in labor for 48 hours with her and 24 hours with her sister, she thought she was having bad cramps so she went to her doctor's appointment early. She was dilated to a 7, he was astounded. He sent her to the hospital and then made it over less than 2 hours later to deliver RJ. I was there for the labor and delivery. I wasn't sure how I would react to seeing her in such pain and it was hard but the overriding thought that I had was that of pride. She was so strong and brave and got the job done. Just like when she got thrown off her horse then it stepped on her. She entertained the delivery staff throughout the whole thing with her witty comments and remarks. She had just gotten the news that the anesthesiologist was stuck in surgery and couldn't come down to give her an epidural when her husband asked her if she thought the baby would have red hair like him. She just got her patented ornery look on and asked him if he would be upset if the baby was black. He didn't ask anymore frivolous questions after that.

When RJ crowned, then went back up in a little, there was a bit of cursing. She said,"Did he go back up in there?" and when they told her yes, she said "Sonuvabitch", which all things considered was more than fair at that point, she would know. The nurses all looked at my reaction before cracking up laughing. Family and friends were gathering out in the waiting room so I surreptitiously sent a text message to them that said "Pushing" then 7 minutes later, one that said "He's here!" My husband is such a proud stepdad and grandpa that he showed the messages to everyone for days afterward. I think he will keep those messages on his phone forever. I wasn't brazen enough to have taken a picture with my phone that wasn't supposed to be turned on. But everyone got to share in the moment a little later when they had him in the nursery and we had a crowd, vying for a place at the window to take pictures with camera's and cell phones.

It was so amazing, I got to be there when she joined the club. All the women in my family have strong connections but at that moment our bond picked up an new thread. I've always told my girls that "You are my favorite oldest/youngest child" and they are as different as my sister and I are, but they are moving quickly out of the annoyed stage and becoming friends. I knew it would happen, I prayed that it would happen, I considered casting a spell to make it happen before I had to pick one of 'em up and knock the other in the head. It is happening now just like it did for my sister and I about the same age. Further proof that there is a God and he is working today.


We have always joked that her husband would make a good mom because he is just that kind of guy, but my daughter is an amazing mom and he is a great dad so this little one will be so loved. (RJ is not really sleeping with daddy, mama just put him there for the picture, daddy was out like a light.)

Family, Bless their hearts.

Family. The longer I live the more I appreciate my family. We have what we call "radar", my mom, my sister and I, and now, sometimes my girls....that can be scary. Sometimes the men in our family are baffled by our camaraderie, which can include going to the bathroom together, at home or at restaurants or the fact that we know when the other is having a bad day, even across state lines. When a crisis happens we are there as fast as we can drive, sometimes we are there before the other one calls. The downside is that we are in each other's business. Bless their hearts.


Important Background Information (IBI)....During an interview, Robin Williams told how there is a certain line of demarcation in this country and to the south of it, women will say "Bless her/his heart". This phrase can mean anything from "Aawwww" to "Back off Bitch." It is so true, it is like an unconscious reflex, but after pointing that out to my mom and sister, we wield that phrase with a vengeance, especially out in public. I'm sure people think we are so sweet....if they only knew.

My mom and sister are a lot alike, sometimes I'd like to pick one up and knock the other in the head....yes, I still quote sayings that my mother used on me. They have definite opinions and are not afraid to share them. I, on the other hand, have definite opinions and am not afraid to manipulate others into seeing it my way. My mom can always see the pragmatic/down side of everything, kinda like rain on a parade. She lost her mother when she was 12 to TB and has been widowed twice, her parade has seen downpours with thunder that rattles you to your core. She is first and foremost a caregiver, family, friends, strangers, stray kids in the neighborhood, she is the most giving person I know. My sister is fierce as the Oklahoma wind when it comes to her opinions and will blow you over if you don't know how to make like a willow and bend. We joke that together we are one whole person. Need anything even remotely artsy fartsy or Suzie Homemaker, I am your girl. Need someone to milk a cow, ride a horse, throw a ball, mow a yard or pasture...she's your girl. Growning up, the big joke used to be for us not to get into tickle fights because someone could get hurt.....then we all laughed because we all knew it would be me. My sister could kick my butt from the time she could walk. She is 2 1/2 years younger than me, but was tougher than any boy we knew.

My mom and sister talk on the phone every day. Each will tell you it is the other one that calls and/or prolongs the conversation. I only have to talk to one of them at a time because they either have already talked and know all about the other one or they will be talking and tell the other one whatever news has been squeezed out of me.

My daughters are 23 and 17 and are past the stage of believing that Grandma and Auntie are perfect and are in the process of working out what kind of adult relationship they can forge between them. That being said, my girls don't answer their phones a lot, because they have caller ID and are under the delusion that they can ignore the two fiercest forces of nature and go on with their lives. I have given the speech over and over, to just accept the forces for who they are and just love them, they don't mean to rain on your parade or blow you over, it's just how they are.

I can talk such a good game. I haven't left my house in 3 days because of pain and fatigue. Nothing earth shattering, sometimes it just happens, no matter what you do. I haven't talked to mom because I know she will hear it in my voice and worry. I made the mistake of calling my sister and I was busted from the git go, so I can expect a call or visit from Mom in the morning. When I have a bad day, or two or week, I tend to avoid talking to either of them because they know when I am lying and I know how much it hurts them when I am hurting. Lupus and a lot of autoimmune disorders can be hard to diagnose and it can take years before there is enough evidence for a diagnosis. The devilish part of it is that so many things hurt, what you wake up hurting with, is not necessarily what you go to bed hurting with. It took a patient and kind primary care doctor, a few specialists, lots of tests over several years to figure it out. When I finally got a very positive ANA (Anti-Nuclear Antibody)test back, I called my mom, positively giddy that there was some evidence that I wasn't just crazy, she said, 'Honey, the test didn't say that you weren't crazy." My sister agreed....I rest my case. Like I said we are very close. Bless their hearts.

About Me

I am a mom to 2 daughters, a step-mom to 2 sons, a grandmother to one baby boy, a midlife crisis to my husband, a co-conspirator to my sister and mom, and a mother-in-law to a poor guy who is crazy about my oldest daughter. I work part time in a doctor's office and I work full time at staying ahead of my lupus. Sometimes my full time job overshadows every other aspect of my life and then I have a bout of MDAD, (Mostly Dead All Day).

For those of you who haven't seen the movie, The Princess Bride, it is a quote from a scene. The hero, Westley, is captured by the evil Prince Humperdink and is subjected to a machine that sucks the life out of him. Westley is rescued and taken to a healer who makes a magic pill to revive Wesley. When he is coming around but is still paralyzed, the giant, who rescued him, tells Wesley that he is doing great considering he has been Mostly Dead All Day.

This seemed to be the best way to describe how I feel some days. But remember it is only MOSTY dead, there is always hope. Some days being MDAD can recharge your battery and you can have a great day after that.