Post Holiday Gratitude

Having a sane, enjoyable, casual holiday gathering with family that love you and accept you exactly as you are is awesome. I am so grateful.

I am so thankful for the connections I have made with people blogging and people reading. It’s been so wonderful connecting and learning from you. And I love that you guys are all over the place–in some of the most beautiful places in the world.

Christmas is coming. I want to enjoy every minute of it. I confess. I love Christmas. I love the way it makes me feel. I love what we are celebrating. I try to stay clear of the commercial trappings in my heart. But I like gifts, and I love to give them. Always have. What can I say? And I love colorful lights flashing in my house and in my yard. It’s celebratory and fun for me. And I love getting out the manger scene. I put it in a different spot for first time in seven years today. I think it looks better in the new spot.

I give thanks for all of my family and friends everyday in some way.

A few of my favorite moments from Thanksgiving:

Morning snooze with daddy

Checking out the "doggie" at the back door

Sister and her honey hanging by the fire

A sunflower discovered

Cousins plopped on the grass together

A little heart to heart

"Baby!"

Grunting along with grandpa

The opposing team

Two sweet monkies

Doggie love

ooohhh--computer

Rockin' grin!

Table time with the cool uncle

He's losing his nose!

Cozy kitty

Dear Family:  Other favorite memories include sister’s yummy gluten-free pineapple stuffing (You and mom are the best! Thanks for the gluten-free fare.), getting in a little shopping with mom and sis just before the sales ended, playing badminton with the guys (Couldn’t have done that with my wrist a year ago. Awesome.), gathering around a warm fire outside while the temps dropped and the sun went down, getting my T.V. dose with a bunch of What Not to Wear episodes, watching Outsourced and laughing with you guys, seeing all of my guys fully absorbed in Star Trek, and witnessing my brother-in-law feeding my niece Thanksgiving dinner and my nephew pancakes and blueberries at IHOP with patience and love. Sweet memories. I love you guys! I have so much to be thankful for.

The Latest From the Professionals

I wanted to let you know that my dermatologist called me personally and told me that my biopsy came back as highly probable for psoriasis. I’ll be honest, I would have prefered–it is or it isn’t psoriasis. Highly probable? Good enough, I suppose. Doc sounded pretty excited on the phone. “This is great! You actually have a diagnosis now that is pretty certain!” Yay for me. I’m sorry if I don’t sound as thrilled. I felt really phony in my response to her and said, “Yeah!” And that’s all I said. What was I supposed to say? “I know this is great! And now you can tell all your doctor friends that I am no longer a strange mysterious rash case with swollen joints.”

Discovering that what has been going on with me has a different name recently was quite a moment for me. I was anxious to share with family and my blogging friends (who are undoubtedly the most amazing group of people on the planet!). But I really didn’t like my dermatologist sounding so excited about the fact that something about me finally came back highly probable just because everything else I have presented her with has completely stumped her, her colleagues and the labs.

I also saw my rheumatologist for a follow up last month. It was an uneventful visit for the most part. Which in essence is a good thing. “How does my latest blood work look, Dr. H?” I asked. Anxious to know whether the antibiotics had affected my liver. To which he replied, “It still looks great.” “How do you feel?” he asked. “Similar to the last visit. Improvements have remained steady and feet are still very painful,” I replied. This means three more months on azithromycin and rifampin to go before I decide on the next step. (I already know what I’d like to try next and doc is on board. Love him!) Since I have seen some progress on AP and my liver is handling it ok thus far, it’s full steam ahead with the antibiotics.

Have you guys seen the recent press release from the American College of Rheumatology? Pretty exciting to a gal who is on AP for psoriatic arthritis. Here it is:

Press Release

THE BODY AGAINST ITSELF: BACTERIA INSIDE ONE’S OWN BODY LINKED TO RHEUMATOID ARTHRITIS AND OTHER AUTOIMMUNE DISEASES

ATLANTA – Researchers are using 21st-century technologies to investigate the century-old hypothesis that certain autoimmune diseases, including rheumatoid arthritis, are caused by bacteria living in the human body and will present their initial data this week at the American College of Rheumatology Annual Scientific Meeting in Atlanta.

Rheumatoid arthritis is a chronic disease that causes pain, stiffness, swelling, and limitation in the motion and function of multiple joints. Though joints are the principal body parts affected by RA, inflammation can develop in other organs as well. An estimated 1.3 million Americans have RA, and the disease typically affects women twice as often as men.

Researchers have long associated periodontal disease, or gum inflammation, and bacteria in the gastrointestinal tract with RA, although no specific bacteria have ever been identified by researchers as the bacteria to target as possible therapy. Nevertheless, studies have suggested that bacteria or bacterial products contribute to RA and other autoimmune diseases.

Led by co-principle investigators Steven Abramson, MD, and Dan Littman, MD, PhD, researchers from New York University’s Langone Medical Center, aimed to determine whether bacteria in the human mouth and intestines can trigger RA. They used DNA amplification technology to identify what type of bacteria exist in the mouths and intestines of study participants, which included eight people with newly developed RA, three people with psoriatic arthritis, and nine people without these diseases – who were considered healthy.

Previous studies have relied on traditional bacteria cultures, which are only able to identify 20 percent of bacterial species in the human body because of the inability to find the right nutrients to grow the culture, which highlights the uniqueness of this study. “By sending our samples for a deep DNA sequencing, we’re able to identify 100 percent of the bacteria that are present,” says Jose U. Scher, MD, director of New York University’s new Microbiome Center for Rheumatology and Autoimmunity and one of the lead investigators in the study. “So we’re taking a huge step forward by not missing 80 percent of the bacteria. Taking that step will allow us to identify bacteria that are related to rheumatoid arthritis.”

Although it’s too early for this to be applied in the diagnosis of rheumatic diseases in a clinical health care setting, the research is already yielding results that distinguish people with RA from those without. Through this study, researchers were able to identify an over-abundance of the prevotellaceae family of bacteria in the intestinal fecal samples of participants who were newly diagnosed with RA—and had not been treated with drugs for the disease—when compared to those participants in the study who were identified as healthy.

Additionally, researchers found that mouth samples of participants with RA exhibited an overabundance of the porphyromonas genus compared to healthy controls. To examine bacteria in the mouth, researchers studied the gums of participants with RA or psoriatic arthritis, and healthy individuals. When examining the gums of these participants, researchers noted that 78 percent of the examined sites bled during examination in participants with RA, which was a significantly higher percentage than those with psoriatic arthritis (38 percent) and those participants identified as healthy (12 percent). Overall, 66 percent of participants with RA had moderate gum disease – compared to 25 percent of the participants with psoriatic arthritis and 12 percent of the participants in the healthy group.

Additional studies by the group have demonstrated that specific microbes induce the differentiation of Th17 cells in the intestine. There is already strong genetic and therapy-based evidence that pro-inflammatory Th17 cells and anti-inflammatory regulatory T cells (Treg) have critical roles in autoimmune diseases, including RA, psoriatic arthritis, and Crohn’s disease.

“The basic premise is that there are different oral and gut bacteria that activate Th17 cells to promote inflammation,” Dr. Scher explains. “Our hypotheses are that characterization of Th17-inducing microbes in the human intestine will provide insight into disease pathogenesis, and that directed manipulation of the gut microbiota will result in the alteration of arthritis biomarkers, including Th17/Treg balance.”

The next step for the team is a study in which 90 participants with RA will be subdivided into three arms. The first two arms will be given antibiotics for a two-month period, and the third arm will be given placebo. The researchers believe that by modifying the microbial flora with antibiotics, they can identify molecular mechanisms by which RA-associated bacteria affect Th17 and Treg homeostasis and thereby develop new strategies to diminish or even prevent the inflammatory process that leads to chronic destructive arthritis.

The American College of Rheumatology is an international professional medical society that represents more than 8,000 rheumatologists and rheumatology health professionals around the world. Its mission is to advance rheumatology. The ACR/ARHP Annual Scientific Meeting is the premier meeting in rheumatology. For more information about the meeting, visit www.rheumatology.org/education. Follow the meeting on twitter by using the official hashtag: #ACR2010.

Editor’s Notes: Jose U. Scher, MD will present this research during the ACR Annual Scientific Meeting at the Georgia World Congress Center at 3:30 PM on Tuesday, November 9 in the Room A 411. Dr. Scher will be available for media questions and briefing at 8:30 AM on Monday, November 8 in the on-site press conference room, B 212.

In Honor of My Father

Dear Dad,

I wanted you to know that you are in my thoughts today in honor of Veteran’s Day. Thank you for your dedicated service to our country and to our family. I am proud of you and praise God that you returned safely to us each time you were deployed.

I never liked being a military kid growing up. Moving and changing schools frequently was extremely hard for me. Saying good-bye to dear friends over and over always broke my heart. And being the new kid–sometimes in the middle of the school year was especially difficult for me since I was a shy kid.

May your retirement be blessed!

But now that I am an adult, I am able to look back with so much gratitude for the experience. It taught me how to adapt to new situations and places quickly, to reach out to people when I walk into a room of strangers and introduce myself, and you showed me different parts of the world and various cultures that I may never be exposed to again. I feel immeasurably blessed. But I am most blessed by the fact that I have a father that proudly served his country with honor and courage. Thank you, Dad.

P.S. I still have all of the letters you sent me when you were deployed. They are treasures to me and pieces of history.

My e-mail Response

I finally did it. I sat down and just typed what came to my heart and mind in response to the e-mail I mentioned in the previous post. After I had written it, I stared at the screen and thought–oh, no way can I send an e-mail this long to her. She won’t know how to respond. She might think-woah-a little more information than I needed, thank you very much. But there it was on the screen–my heart. I couldn’t just chop it up and edit it. And besides, I didn’t have the time or the energy to do so. So, I held my breath and hit send. That was this morning. No response yet. I’m trying not to think about the fact that I just kind of threw up my diagnosis and condition all over her. I’m trusting her. And I will undoubtedly see her next week at our children’s Thanksgiving feast event at school. But it’s done. I can check it off my list and move on.

Here is my response. What do you guys think? You can be honest. I can take it. I think.

L,

I feel terrible for not responding to you sooner. What a precious angel you have. When I read that Faith had prayed for me–a mommy she doesn’t even know–tears welled up in my eyes. Every time I’ve thought about her beautiful spirit since, the same thing happens. I am so touched. And so humbled…

To be very honest with you, I have been reluctant to respond because I wasn’t sure how to. I have yet to share what has been going on with my body with a lot of friends because those that I have told have offered mixed reactions. Some have been sweet and supportive, while others have questioned either my faith or my choice to avoid certain drugs, or have offered solutions that completely belittle what I have been experiencing. I just want to say to some people–who are you to judge God’s will for someone? His plans are perfect.

But because you reached out, it’s on my heart to share with you. I have been diagnosed with a disease that is currently without a cure and at this point will be lifelong. It is a disease that can attack your joints, tendons, organs, eyes and skin and causes a lot of pain and inflammation. It is called psoriatic arthritis. It’s important to me to explain the diagnosis to people. Because if you’re anything like I once was–you hear arthritis and think of old people. This is different than osteoarthritis. It is an auto immune arthritis that is traditionally treated with powerful drugs. Although, on most days, I sure do feel like an old lady because of the pain! When people see me on the street–they would never know how much pain I am in. I look perfectly healthy and can walk without a limp on most days to prevent awkward stares, but it usually hurts like crazy to be on my feet. I have bone loss in my feet now and permanent deformity to some of my toes. I was extremely healthy and physically active when I was diagnosed. My kids have always thought of me as a health freak. I’m the healthiest, unhealthy person a lot of people know.

J has been praying that mommy’s joints would get better. He prays about it everyday. I am so blessed. And I am at total peace with what God is doing. His will be done. When I feel closest to Him, I thank Him for the pain and for what He endured through death for me so that I don’t have to. I know you understand this sacrifice.

Please tell your daughter how much her prayers mean to me. Words don’t do my feelings justice. And thanks for checking on me, L. So sweet of you. Sorry for such a  long e-mail. Hope I didn’t overwhelm you with info.

-K

Uncertainty

Two situations left me somewhat uncertain about what to say and do this week. One of the situations has been handled, while the other still hangs over my head.

My oldest son is in sixth grade. He has a classmate that has not been able to attend school this year due to something going terribly wrong in his body. The young boy is being tutored at home with hopes of being able to jump back in at school some day. I was unaware of the situation until I received an e-mail from one of the middle school moms asking families to sign up to bring meals to this boy’s family.

I know the mother of the boy. Our children spent time together over the summer a couple years ago doing various activities and we happen to be put together in a Bible study a few years ago at our church. She is a sweet woman that has poured hours of her time and energy into the school’s activities and committees. She is intelligent and capable of getting a big job done well. For her to accept meals month after month tells me the family is spread very thin.

I learned of the news about a month ago and desperately wanted to call her right away. My heart broke when I heard that something was wrong with her son and she came to my thoughts and prayers often throughout the days to follow. I wondered what he was dealing with physically and how she was doing mentally.

The meal calendar filled up quickly and the soonest available spot was a month later. I wrestled in my mind over whether to call her for the entire month. I know her, but I don’t know her well enough to know if she prefers her privacy, or wants a barrage of well wishers calling and checking on her and her son. I wondered whether I would be bothering her by calling. Would I be just another call she had to deal with? Would I be just another person offering their prayers and sympathy? Would I be invading her privacy by asking her how she is really doing through all of this? Would I seem nosy by asking her what is happening with her precious child?

And so, I waited until it was the day I was to bring a meal to call. I prayed all morning about the call. I prayed for the right words and for His presence. Now I was in the driver’s seat of what to say and what not to say to someone dealing with a difficult time in their lives. And I was swallowed up with anxiety.

Maybe it was because I know what it feels like to have people ask you what’s going on with you physically and wishing you could just disappear and avoid the conversation all together. Maybe it’s because I know what it feels like to have people tell you that they are praying for you with sadness in their tone and a puppy dog look in their eyes. (I don’t like being made to feel like a sad, pathetic case for prayer. I am so eternally grateful for prayer. But no pity prayers, please.) Or maybe it’s because I value my privacy and prefer not to share with everyone I know what I am dealing with as a result of my immune system being uncooperative.

But if it were my child suffering. Would I feel the same way? I have to wonder. Something in my spirit tells me that I would be reaching out to every living soul I know, sharing our situation and asking for prayer. And yet I haven’t done this for myself. I often wrestle with this in my mind as well.

When I made the call, the boy’s mom was very gracious. I was so conscious of every word that came out of my mouth. I didn’t want to belittle one second of what she had been going through. She took the time to answer my questions and shared with me that her son has been dealing with a pseudo tumor on his brain. There is fluid causing migraines, hearing loss, and blurred vision. But there is no tumor. This sweet boy has endured four spinal taps and multiple doctor visits to a long list of specialists. No one has been able to give the family an answer as to why their child is suffering. He is on multiple medications, yet the pain persists. And now he is experiencing back spasms as a result of the spinal taps. I was shocked to learn that he has been taking 120 mg of prednisone every other day for months. They are meeting with an oncologist now that wants to wean him off the steroids within 6-7 weeks to see how his body responds.

There were moments in our conversation that were sprinkled with laughter and talk of subjects that had nothing to do with what she is enduring. But there were also pauses in the conversation when neither one of us knew quite what to say. I was so grateful to have been able to talk with her. I hope that next time it is on my heart to call someone experiencing a difficult season, I just do it.

The other situation that has left me at a loss for words has to do with my own health. I received the following e-mail over a week and a half ago:

“Faith included you in our Sunday School prayers (we teach the 4th grade) and said you were ill. I hope you are ok – I think she heard a concern from your son in her 4th grade class! So sweet….-L”

I have yet to respond. I feel awful. My uncertainty about how to answer has turned into a bad case of procrastination.

This e-mail brought tears to my eyes. A little girl that I don’t even know prayed for me. She thought of me when she went before the Throne of God. I am so humbled. So very humbled. I am so grateful. So touched. Tears are streaming down my cheeks as I type….

I know this mom also. But we are only casual acquaintances. We have shared very brief exchanges at various school activities over the past few years. I know very little about her other than the fact that she also pours her heart and time into the kid’s activities at school–and she knows a lot of people at the school. I’m at a loss because I am struggling with how much I should share. I could keep it short and sweet. But how do you keep it short and sweet without educating people at least a little about your disease so they don’t make assumptions and draw their own conclusion? And does she really care to know the details of my situation? She hardly knows me and I have yet to share with several friends that know me a hundred times better.

Why am I dragging my feet on this one? You’d think this would be a cake walk. But no. I am over analyzing and making this difficult. I guess I’m also afraid that word will get out and I will have to field questions or stares the next time I attend a school activity. I’m realizing through this how much I value my privacy and as WarmSocks put so well, my cloak of invisibility. I know I need to respond so I can put it to rest and get unfinished business off my mind. I also need to let her know how moved I was by her daughter’s sweet heart and her obedience to pray for others. Now if I could just decide on a way to respond.

Praying for my brothers and sisters. May God bless each of you with joy.

“You make known to me the path of life; you will fill me with joy in your presence, with eternal pleasures at your right hand.” -Psalm 16:11 (NIV)