Workin' It, Ownin' It

07.31.12

*Post title not to be compared with Julia Robert's role in Pretty Woman*
I've finally decided to own up to my blood tests. Several months ago, my rheumatologist told me that I have (or will have) Sjogren's Syndrome, a chronic autoimmune disease in which people’s white blood cells attack their moisture-producing glands.

Although the hallmark symptoms are dry eyes and dry mouth, Sjögren’s may also cause dysfunction of other organs such as the kidneys, gastrointestinal system, blood vessels, lungs, liver, pancreas, and the central nervous system. Patients may also experience extreme fatigue and joint pain and have a higher risk of developing lymphoma.

When my doctor explained the disease, he mentioned the dryness effect. Dry eyes and mouth ... I couldn't recall ever having those symptoms. But after connecting with others who live with Sjogren's, I've learned there really is much more to it than that.

• Dry skin (Maybe that's why I've been moisturizing like a fanatic)
• Fatigue (I always chalked this up to being a mom-of-3, but no matter how much sleep I get, I'm still tired. I used to have energy. Really, I did.)
• Ear pain (My ears have been "popping" a lot lately. It's annoying)
• Joint pain (You'd think with a titanium hip, my join pain would lessen. But, nope)
• Difficulty swallowing (yep)
• Always thirsty (yep)
• "Brain fog" - a lay term to describe fluctuating mild memory loss (I'm a tried and true blond, but it's possible)
• Celiac Disease (between 4.5% and 15% of people with Sjogren's also have Celiac Disease, which I do have a lot of symptoms for - I need to look into this further, but it's been on my mind. I've ignored it, because I don't really want to eat Gluten-free)

I don't mean to seem like a hypochondriac, but all of these things make sense now. I also want to add that these symptoms have become new to me this year. I don't know if Sjogren's was brought on by the silcone in Mirena, or if it was something I was destined for. But I do know that these problems are new to me. I have also read that "silicone poisoning" causes Sjogren's Syndrome.

Since symptoms of Sjögren’s mimic other conditions and diseases, Sjögren’s can often be overlooked or misdiagnosed. On average, it takes nearly seven years to receive a diagnosis of Sjögren’s.

Lucky (or unlucky) for me, I was on a fast track for diagnosis, because my doctor's were trying to figure out why I developed Avascular Necrosis (though Sjogren's Syndrome is not a known cause of Avascular Necrosis). Last week, I was re-tested and my blood levels still indicated that I have Sjogren's Syndrome. I don't know why I thought that it would just go away.

My original tests (in March) also indicated a clotting disorder. But with my tests from last week, those levels had come down significantly. That was a good thing, but it also makes me wonder what caused the clotting in the first place (hmmmm). I might go to see a hematologist just to completely rule out a clotting disorder.

I guess what all this rambling sums up to is that I probably do have Sjogren's Syndrome. And until the blood tests reveal that I don't, I'm going to "work it" and "own it."

I plan to start taking Plaquenil, which is what my doctor suggested to slow the progression of Sjogren's. Since using Mirena, I've been picky about any prescriptions, and I pay closer attention to side effects. I was nervous about Plaquenil because it's main side effect is vision impairment. I happen to have 20/20 vision and that is not something I want to forfeit. But other Plaquenil users say this hasn't been a problem for them, so if it'll save the rest of my body, I'm willing to give it a shot.

Another interesting tidbit: Sjogren's Syndrome is what forced Venus Williams out of the U.S. Open last year (http://abcnews.go.com/Health/w_MindBodyNews/venus-williams-sjogrens-syndrome/story?id=14426884#.UBhluHCxpsM)

Let The Games Begin!

07.29.12

With the Olympics underway, I felt that it was only fitting to share my families own version of the Olympics. Each year, we have our annual family reunion, known as the Lineberry Olympics. We rotate to different locations each year. This year, it was held at The Villages, a city-sized retirement community in Florida where the residents prefer to travel by golf cart.

I was nervous about the family Olympics this year. Last year at the Olympics, I was in perfect health. I was fully physically able. Since so much has changed within the past year, I wondered how my new life would fit into the event.

We play different "games" each year. There is one staple game, which seems to stick and that is the "Sprinkle Splash," where you race from one line to the other with a cup of water balanced on your forehead. As you can see from some of the photos belows, the race gets pretty intense and often times, it's a close photo finish.




Going into the event day, I was sure that I would not be participating in most of the competitions. But after getting through the morning without being in horrible pain, I decided to give all of the events a shot. For the Sprinkle Splash, I started off in the lead with my cane by my side, but my cup of water fell off my head halfway through, and I watched the others crossed the finish line.

There was an obstacle course this year, where we had to stop at three stations to complete a task - first, by naming the capital of a state that was pulled from a bucket; second, by threading a needle; and third, by placing several shapes into a shape sorter. Each person had one minute to complete the course. I was able to finish it in 59:59 seconds. That right ... .01 second before the limit.

This was a proud moment for me since many people didn't complete the course, including my husband. I'm trying my best not to rub it in his face that his disabled wife was able to beat him.

We played other, less-physical games that involved scooping coins out of ice cold water using our feet, throwing balls through a hula hoop, card shark and another game where we "rolled" out small pigs like dice for a point system game.

The reunion includes several branches of the family. I have to say, It's possible that I married into the most fun family ever. This is an event that I look forward to each year. It's not only a chance to catch up with family we don't often get to see, but it's a chance to get away and have a great time.

I didn't win any medals this year, but my 11-year-old won 3 medals and my 3-year-old also won 3 medals. Since the games include more than 100 people, getting a medal is not easy to do. But the children (up to 11 years) have their own version of the games. It's so hard to believe that my oldest son will be considered an "adult" at next year's games. He's still a baby in my eyes.

It is such a joy to watch my children stand up on the podium and receive a medal ... it's something I enjoy more than receiving a medal for myself. Our youngest is just 16 months old, so he was not interested in playing any 'official' games. But if there was an event for "running around with a ball in your hands," he would have received the gold, for sure.

At least now I know that, despite my physical set backs, I can still be involved and compete in the Olympics -- just knowing that gives me strength.

In my mind, I received a gold medal just for making it there and being able to compete. Finishing the obstacle course in a faster time than my husband was certainly the cherry on top :-)

Check out this Columbia Star article, which was written about the event in 2008:
http://www.thecolumbiastar.com/news/2008-06-27/Beauty_in_the_Backyard/Lineberry_family_celebrates_33_years_of_Olympic_si.html

How Many Spoons Does it Take?

07.24.12

I glanced over at the needle resting on the table, which seemed to be almost a foot long. As I laid on my right side across the reclining bed in my orthopedic doctor's office with an exposed left hip, I instantly regretted looking at it.

"Are you ready?" the doctor asked.

"Uh huh," I replied and held my breath until a good dose of cortisone was done being injected.

That experience today had an intense Déjà vu effect on me. Last October, this was exactly how my journey with Avascular Necrosis began. The doctors treated me with the same injection for Trochanteric bursitis. But when the pain didn't subside after two weeks, the MRIs began and I was diagnosed with AVN.

One hip. Both hips. Right shoulder. Started in the left shoulder, but never progressed.

One, two, three core decompression surgeries. One hip replacement.

Wheelchair. Crutches. Walker. Cane.

Today, I found myself taking a deep breath in and out, and thinking, "Wow. I really survived all of that."

This time, I was receiving the shot because I've been experiencing pain in my left hip after I fell down some stairs in my home. I was worried that I had cracked my bone or that I caused the already-existing crack to become larger. But the X-rays came back clear, so that was a huge relief. The doctor said that Trochanteric bursitis is common after a hip replacement and that my fall could have inflamed it.

I am already feeling some relief from the shot, and I hope that relief continues.

As far as recovery goes, I'm doing well. We just returned from a week-long vacation to Florida to visit friends, and to attend our family reunion. I'm happy to say that I didn't miss a beat.

Still, after my appointment today and a follow-up appointment with my rheumatologist yesterday, I'm realizing that things will never be the same for me. I had more blood tests taken (about 14 tubes). Most of them are re-tests to see if anything has changed. Blood tests, observations and x-rays have become a part of my life, and will be for some time -- possibly the remainder of it.

I'll never forget sitting in the doctor's office after he told me that I had AVN in both hips. "It's a short-term crisis, with long-term benefits," he said as he began to explain my surgery options.

I'm still working on the "benefits" part, but one thing is for sure -- I look at life in a completely new light. Having a greater appreciation for life, for health, and for everyday abilities is priceless. Perspective is a powerful thing.

I am still limited. Daily, I have to carefully choose what I will or will not do. And I'm finally coming to realization that -- this is my life. It will never be the same. I can't just go and do anymore. I have to really think about it first and decide what I will be able to handle for that day. That's been difficult for me since I am very used to staying busy and being involved.

I decided not to run for PTO office again at my youngest children's school. I've had to take a step back from working with a non-profit, First Book-Hampton Roads, which is very near and dear to my heart. I've had to put off publishing my next children's book, because I know I don't have the energy to promote the book when it publishes.

Each day, I have to avoid things that most people do not think twice about -- a trip to the grocery store, lifting my children, sitting in the sand with them at the beach. I have to carefully plan out showers, outfits and events that I am able to attend.

It's hard for me to say "no" to things, but I'm learning how to do that the hard the way -- because I have to. Now, the biggest challenge is getting others to understand. I don't want people to think I am being "lazy" or "unmotivated." A positive mindset is key, but there's more to it than that.

Millions of people live with limits from some type of diagnosis. Maybe it's cancer. Possibly Lupus. Maybe you were injured in a car accident. It could be any number of things that causes you to sacrifice pieces of your life.

When people appear "normal," it is even more difficult for people to understand. And how could people possibly understand a disability that they can't see?

My heart goes out to people who struggle everyday with their health, in addition to struggling with a world that doesn't understand their limits.

If you know someone with an "invisible disability" or any disability (whether temporary or permanent), I HIGHLY suggest that you read this: http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/

Do you have limitless spoons?

"Blessed is he who has regard for the weak; the LORD delivers him in times of trouble. The LORD will protect him and preserve his life; he will bless him in the land and not surrender him to the desire of his foes. The LORD will sustain him on his sickbed and restore him from the bed of illness." -- Psalm 41:1-3 (NIV)

Here's a Quarter ...

07.14.12

... Call someone who cares? Well, that's going to be a problem.

I found an interesting clinical trial about an oral LNG (levonorgestrel, the active ingredient in Mirena IUD), which seems to show that nearly 30% of the study participants (women, of course) experienced a decrease in Bone Mass Density.

This trial was completed in October of 2011. Ironically, this is when my bones really started to deteriorate at a pretty rapid pace after having Mirena inserted in May of 2011.

[READ CLINICAL TRIAL HERE]: http://clinicaltrials.gov/ct2/show/results/NCT00511342?term=mirena&rank=103§=X643015#outcome1

If you look at the "measured values" within the trial, the number on the right within the LNG-EE column shows that the standard deviations (or difference/decrease in Bone Mass Density compared to women who were NOT using LNG-EE) was 26.9 percent and 25.3 percent. If anyone has a different idea of what these results (deviations) mean, please let me know.

One summary of that trial even says:
"Primary Measures
Safety Issue?: Yes"
[READ SUMMARY HERE]: http://clinicaltrialsfeeds.org/clinical-trials/show/NCT00511342

For me, being a woman who was exposed to LNG and then experienced bone deterioration, those percentages seem pretty significant. And yes, I would definitely agree that it is a "safety issue." But how come it seems to just stop there?

Because I can't be completely sure about what this trial is stating (I have no medical training), I sent this trial to my orthopedic doctor through an online communications tool. I asked if he could provide some clarification about what I was reading, and I asked if he thought these percentages were "significant."

The following day, I received a response from his nurse that said something along these lines: "This study was conducted on a group of about 54 women, so the results will not be very significant. Please contact your GP or OBGYN for help."

So, I don't know if it was doctor's orders for her to respond, but I really don't care if it was only 54 women - especially if almost 30 percent of them were negatively affected. And wouldn't the doctor care to know since he deals with bone health on a daily basis?

I cannot tell you how discouraging doctors have been throughout this process. Don't get me wrong, I'm am grateful for all of their expertise and abilities, but again, why does it just stop there? I know they are busy, or maybe they are scared I'm trying to drag them into a legal battle (which I am not), but who do I turn to for help? How do we stop this from possibly affecting other women if no one will take the time to listen?

Here is another study that I sent to my doctor. I received no feedback from him.

Osteoporosis in a young woman after 6 years of levonorgestrel (LNG) administration from intrauterine devices?
[READ HERE]: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3030178/?tool=pmcentrez

While I find the entire write-up interesting, I particularly found these points to be important ones:

- High local concentrations of gestagen in the uterine cavity caused by an LNG-IUD (Mirena) have been confirmed in many studies. It is worth recalling that the uterus drains via the vena uterine into the vena cava inferior, and this can reduce a possible first-pass metabolism of levonorgestrel and provides the opportunity for SYSTEMIC effects.
... There goes that word again, SYSTEMIC, meaning the LNG affects the entire body and not just the cervix.

- Within the conclusion, it states: "Low doses of gestagen (steroid hormone) given to young women – even when released locally in utero – may result in long-term bone mineralisation deficits and impaired bone mineralisation if ovulatory cycles, and consequently oestradiol production, are lacking."

Another clinical study on Mirena caught my attention, because 23 out of the 254 who participated reported musculoskeletal and connective tissue disorders during the trial. I realize that this is just 9 percent of the participants, but how many women have to be affected for something to become "significant?" According to the published trial, women reported Arthritis reactive (an autoimmune condition that develops in response to an infection in another part of the body), Intervertebral disc protrusion, Rotator cuff syndrome and back pain. Though, the trial doesn't say that the LNG caused these events, it's interesting enough that they were reported while having LNG released daily into their body.

[READ CLINICAL STUDY HERE]: http://clinicaltrials.gov/ct2/show/results/NCT00185380?sect=X43015#othr

I'm just going to put this information out there, because I do know some women who might appreciate this information without having to dig through clinical trials for it.

As for doctors, maybe next time I should try to insert two quarters and then see who is willing to pick up?

"Jesus replied, 'A man was going down from Jerusalem to Jericho, and he fell among robbers, who stripped him and beat him and departed, leaving him half dead. Now by chance a priest was going down that road, and when he saw him he passed by on the other side. So likewise a Levite, when he came to the place and saw him, passed by on the other side. But a Samaritan, as he journeyed, came to where he was, and when he saw him, he had compassion. He went to him and bound up his wounds, pouring on oil and wine. Then he set him on his own animal and brought him to an inn and took care of him.' ... " -- Luke 10:30-37

I Think I Cane, I Think I Cane

07.13.12

It's been six weeks since my hip replacement surgery. I should be off of my cane by now, but I am not. I can tell my left hip isn't ready -- It painfully reminds when I try to walk without my cane.

The past couple of weekends have been a whirlwind of birthday parties, fireworks, cookouts and baseball games. I may have overdone it somewhere along the way. And the nasty little spill I took down our garage stairs probably didn't help either.

When I wake up in the morning, I can feel the pain before I even start to move. It's a sharp pain that gets worse with very specific movements -- Going from standing to sitting (and vice versa), picking up things from the floor and getting in and out of my car are probably the worst.

I called my orthopedic surgeon last week and set up an appointment to have another x-ray done. Of course, I have to wait two weeks (now, a little more than one) to get into the office. I'm almost positive that the crack in my left hip has gotten worse.

During my hip replacement surgery, the doctor had to go up one size in titanium to make my legs even again. The larger piece of titanium caused a crack in my hip when it was inserted.

In the past two weeks, the pain has worsened. It could be the crack or it could be something completely different. I never know what to expect when I go to see the doctor anymore, so I wouldn't be surprised if it were something I've yet to think of -- or never even heard of.

After all, this all started as pain or inflammation from childbirth and quickly became four surgeries, which has temporarily labeled me as disabled. Sometimes, it all seems like a blurry dream, but reality always snaps back into play when I begin to move.

We'll be spending our weekend packing up for our family reunion in Florida. I am so excited about this trip and I'm glad my appointment isn't until after we get back. I don't want to let any bad news spoil the fun. I will finally get to meet my best friend's baby boy and we are going to stay with her for a couple of nights before meeting up with the rest of the family for the reunion.

I'm strolling right along and enjoying my summer, despite the pain I still feel in my left hip.

In hindsight, the pain I have now is such a minor thing. I think back to a very recent past of extreme limping, uneven legs, time spent in a wheelchair, time on crutches, having to hug my children with one arm, and not being able to lift them.

I may not be ready to walk without a cane, but considering everything my body has been through in the past few months, it's amazing that I am moving along at a pretty steady pace.

I get tired. Sometimes, I still get frustrated. But in the midst of all of that, I'm constantly reminded of how blessed I truly am, and how far I have come.

I am excited to see what God has in store.

"No eye has seen, no ear has heard, no mind has conceived what God has prepared for those who love him." -- 1 Corinthians 2:9

The Skinny on Being Skinny

07.05.12

This post is probably going to be annoying and uninteresting. I've had something roaming around in the back of my mind for several weeks (OK - more like a couple decades) and I think I just need to LET IT OUT.

This past weekend, I was approached by a woman at a cookout. She walked up to me out of the blue and started to tell me how cute my kids were. It seemed like a harmless conversation. But the conversation took a turn for the worse when she quickly followed up by asking me how much I weigh.

I didn't tell her. What I did tell her was that I've had four consecutive surgeries since February and that I have lost weight through all of that. I thought we would go back to talking about my cute kids, but we didn't. She wasn't done yet.

She proceeded to ask me if I was going to try and gain any weight back. I took a deep breath and kept my manners in check. I told her that "Yes, I would definitely like to gain weight and I am trying to do just that."

She responded with: "You really should do that. Fifteen pounds would look really good on you."

I took another deep breath and managed to say, "I agree." I gave a weak smile and walked away.

Let's flip the script for a second. What if she had walked up to someone else and told them that they should lose 15 pounds? Totally inappropriate, right? Right.

Well, this is a reoccurring scene in my life. Don't get me wrong - I do not have acceptance issues nor am I obsessed with my appearance. I don't try to be "skinny," but I am. And I am told that I am on a regular basis. You would be amazed at the some of the conversations I have to sit and smile through as women openly discuss me being "skinny."

Many will assume I enjoy looking the way that I do. Many will talk about my appearance negatively. Some people, like the woman at the cookout, will openly tell me that they don't necessarily approve of the way I look.

Growing up, the word "skinny" made me cringe. Sometimes, it still does. But I brush it off now, because I'm beyond seeking physical approval from others.

I'm not happy with the way I look right now, but that is between me, myself and I. And my husband still thinks I look good (God bless him - he's a good man).

Unfortunately, since my body has taken time to adjust to medications and overall recovery (4 times in a row), I lost weight when I certainly didn't need to. I don't look healthy right now and I am certainly aware of that. I will get back to a healthier size. I had hip replacement surgery on May 24 and I just got my full appetite back about two weeks ago.

I know that the world is full of people who promote "skinny" as a good thing. I know that criticism goes in all directions. But for some reason, it seems socially acceptable for woman to openly criticize skinny women. There might be some loons out there who enjoy looking skeletal and like to be called "skinny," but most do not.

It is not OK for you to ask me my weight because I am skinny. It is not OK for you to bash skinny women. It is not OK for you to openly discuss a woman's size, because she is skinny. Unless you know for a fact that someone is purposely TRYING to lose weight, it is not OK to address a woman's size (and even then its not always OK). It is not OK to call someone "skinny" and assume that they think it is a compliment. Chances are, "skinny" is a word that has been used to put them down many times before.

How about we (I'm talking to women especially) just be a little nicer to one another, eh?

Here are just some "skinny" statements that I've seen online.

This not only puts me down, but it puts down my husband, too.

Cool.

Me = not disappointed that "Mr. Grey" wouldn't like me. P.S. I eat.

Dumb.

I'm not lucky, I'm blessed -- but definitely not because I am "naturally skinny." Strength, on the other hand, does not come naturally ... and I have that, too.

I adore Adele. I'm sure she must have greater life goals than this. I also think that she AND Nicole Richie are both beautiful women.

And in response to the "Real Women Have Curves" comments and photos that are popping up all over Pinterest. Um, I may not have curves like yours, but I'm pretty sure I'm a real woman.

Phew. I feel better now. Thanks for bearing with me.