Saturday, August 25, 2007

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:

Wednesday, August 22, 2007

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.

Sunday, August 12, 2007

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.

Wednesday, August 8, 2007

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.)


Monday, August 6, 2007

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.

Sunday, August 5, 2007

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.