Don't Stop Livin'


"There was a crooked man, who walked a crooked mile.
He found a crooked sixpence against a crooked stile.
He bought a crooked cat, which caught a crooked mouse,
And they all lived together in a little crooked house.

Yesterday, I returned to my orthopedic doctor for the first time since July. He mentioned a story about a crooked man who built a crooked house, and he said it reminded him of me.

We all laughed about it. I have to admit that now, since becoming "even" again after my left hip replacement, the laughing comes from a genuine place ... one that doesn't require me to laugh at an otherwise crappy situation.

X-rays on my hips revealed that my left hip, which is now made of titanium and ceramic, is doing well. My doctor said that when he saw it on the x-ray that he 'patted himself on the back.' And he should.

The right hip was as expected -- a little "iffy" at best.

He explained that there were no further signs of Avascular Necrosis. With that, came a HUGE sigh of relief. That meant that my hip wasn't getting any worse, and that my blood circulation had restored itself back to normal. My right hip was no longer deteoriating.

"But," he said.

... There always seems to be a "but."

"But it's not a normal hip by any means," he said. "And eventually, you are going to need a replacement."

It wasn't horrible news, since I had already figured that much. I'm only hoping I can hold off on getting my right hip replaced for at least a few years. He suggested that - once it is to a point where the pain medication does not help, and it affects the quality of my life - to consider the replacement.

And I will. Because my left hip, which has already been replaced, is doing great. Had I not had it replaced - I'd still walk uneven with an aide and I wouldn't be able to do half of the things I am an able to do now.

I might have built my own crooked house.

The main thing I'll have to watch out for with my left hip is infection. Our immune system is unable to attack bacteria that live on implants, and these infections can become serious problems. If an infection of an implant goes untreated, the problem can worsen, and the bacteria can gain such a foothold that they can become a systemic problem.

Despite excellent antibiotics and preventative treatments, patients with a joint replacement infection often will require removal of the implanted joint in order to cure the infection. Fingers crossed that it will never happen!

My doctor explained that he can see where sclerosis (thickening or hardening of the bone) has occurred in the right hip. That meant that my bisphosphonate that I take each month is doing it's job. Still, the top of the hip is damaged. It's not near collapse, but it's not round like it should be. It actually looks "ridgy."

Then I asked my doctor: "Would now be a good time to tell you about my new problem?"

I could tell he was a little scared about what I was going to say next. I was, too.

For those who are not familiar with Avascular Necrosis (AVN), it typically affects bones and joints in a parallel manner - hence, my own AVN progression, my left hip, then right hip. My right shoulder, then my left.

"It's my hands," I told him. "They hurt ... bad."

At the end of the day, I can barely work them into a fist. It's been a problem since I write full-time. If I'm not typing, I'm clicking. I'm if I'm clicking, I'm writing. For any given event, I can easily take 5-6 pages of notes.

So I had more x-rays done on my hands. Thankfully, they came back clear.

It's possible that pain is a side effect of Sjogren's Syndrome, or the bisphosphonate that I take each month.

For now, I'm going to try a few "hollistic" approaches for my hands.

I despise medication, so I'm willing to give these things a shot:

If anyone has any other ideas for pain relief for my hands, please let me know.

I'm just so happy that my bones are still in tact.

Hips are important. Hands are important. Shoulders, too. Don't take these things for granted. They allow you to live your life like you do. [hey, that rhymes}

And on that note, the final question I asked my doctor as he was walking out the door was, "So, no skiing this winter?"

"If you want to ski, you should," he replied.

I couldn't believe my ears. Now my husband and I could finally have our photos taken at the ski resort we got married at in 2008. Our wedding photographer screwed up all of our wedding photos and last year, we planned to have anniversary photos taken there, but that was cancelled because of my condition and pending surgeries.

I actually ended up having two surgeries on our 4th anniversary.

So, for our fifth anniversary, I think we'll finally head back to the mountains.

My doctor poked his head back in the door and said: "Don't stop livin'."

Touché, doctor ... touché.

"I look to the mountains; where will my help come from? My help will come from the Lord, who made heaven and earth. He will not let you fall; your protector is always awake. The protector of Israel never dozes or sleeps. The Lord will guard you; he is by your side to protect you. The sun will not hurt you during the day, nor the moon during the night. The Lord will protect you from all danger; he will keep you safe. He will protect you as you come and go now and forever." -- Psalm 121

Remind Me Who I Am


Over at Kate Krull's blog, she's been hosting "Fun Fridays" for many weeks now. I've been looking forward to this specific one, because she asked us to share "where you worship."

My family and I attend Water's Edge Church on the Virginia Peninsula. They have three separate locations [Yorktown, Hampton and Newport News], and you can also watch the services online at:

Today's service tapped into one of the reasons why I love my church so much. It was the second in a series titled, "No Perfect People Allowed."

I love being a part of a church that welcomes everyone with open arms; a church that acknowledges that we are not perfect. We sin ... again and again [and again and again]. There is no pressure to be "perfect" there. Everyone dresses casually and comes as they are. It's not a "traditional" church with a steeple, but the contents for an amazing place of worship are all there.

Waters Edge Church has grown from 50 people to a church of thousands because they do church differently. They don’t do what’s expected or, for that matter, what’s accepted. The music is loud. The message is bold. They value kids and love students. They do whatever it takes to connect people to God.

Because it isn't "traditional," people do judge it. Unfortunately, that judgement is usually passed by other Christians. But we have found a home there; it is our refuge from the imperfect lives that we all live.

This morning, Pastor Stu Hodges talked about the tension that arrives from a "Perfect/Imperfect Contradiction." The Bible clearly states that God wants us to be perfect. Yet, we are imperfect.

We get frustrated and yell at our children and others. We form unhealthy habits. We disrespect our spouses. We do imperfect things. And this creates a contradiction.

Pastor Stu read John 1:42: "And he brought him to Jesus. Jesus looked at him and said, "You are Simon son of John. You will be called Cephas" (which, when translated, is Peter)."

That's kind of weird, right? Jesus decided to change Simon's name to Peter. Stu acted out randomly changing a guy's name from Frank to Larry, and it was pretty hillarious.

But then his point hit home: Simon meant "shifty," and in fact, Simon had refused Jesus many times before. But Peter meant, "a rock."
Jesus was re-defining Simon as a rock, changing his name to Peter.

Like Jesus changed Simon, He also changes us. He gives us definition and reminds us of who we really are.

Pastor Stu shared the sweetest father's day gift that his children made for him earlier this year. They wrote down some of their favorite memories and lessons learned from their father. They wrote things like: "You're the greatest dad" and "You're the best Pastor in the world."

Pastor Stu said that he didn't believe that he was the greatest dad, or the best pastor in the world. But his children did. And that was an important reminder.

God thinks no differently of us. Sometimes, we forget who we are simply because we let our actions define us. When we’re tempted to act in a way that is not consistent with who we are, we can ask God to help us make wise choices. Who we are, should define what we do [not the other way around].

More times than I can remember, God reminded me who I was -- especially in the last year.

At times, I thought I was weak. Or a bad mother. Or a bad wife. I couldn't care for my family like I had in the past. I felt guilty about how my health affected my abilities. I would get upset, mad and frankly, my misery needed some company. I felt so imperfect. But I managed to pull myself out of those self-defined moments, because God reminded me who I am.

I am a good mother and wife. I am strong. I want to be an unstoppable force. I want to be helpful. I want to be thankful in all circumstances.

Because I am imperfect, I will lose sight of myself. But He won't.

These weekly reminders are so important to me. I'm so thankful for my church.

If you are imperfect, if you are looking for a place to worship, or if you are just curious -- I highly suggest that you check out Water's Edge Church.

"Consequently, you are no longer foreigners and strangers, but fellow citizens with God’s people and also members of his household, built on the foundation of the apostles and prophets, with Christ Jesus himself as the chief cornerstone. In him the whole building is joined together and rises to become a holy temple in the Lord. And in him you too are being built together to become a dwelling in which God lives by his Spirit. -- Ephesians 2:19-22

The Perfect Storm


Much like "Frankenstorm," I had all the right ingredients for a life-altering perfect storm. More than a year after the pain began, I am able to take a look back and track the past year and half with certainty.

I had no warnings. No causes for concern. No time to prepare.

I had my third child in March of 2011. I felt great. Better than ever actually.

At my six-week appointment, I had Mirena (IUD) inserted. Within five months, both of my hips and my right shoulder started to deteriorate from a lack of blood supply (Avascular Necrosis). I saved my left shoulder when I realized the connection and had it removed late in 2011.

But it was still too late for the rest of me. Too much damage had been done.

This is going to be a long post, so try and stick with me if you can. This is information that ANY woman who is using -- or is considering using Mirena IUD -- should read.

INGREDIENT #1 (Silicone & Autoimmunity)

I believe that the silicone in Mirena was released into my body, causing me to have an ANA positive blood test result, meaning that I had an autoimmune issue of some sort. Further testing revealed that I likely developed Sjogren's Syndrome, an autoimmune disease in which immune cells attack and destroy the exocrine glands that produce tears and saliva. The silicone used in Mirena is no different than the silicone used in breast implants.

Here's what the research shows:

Silicone produces abnormalities in immune system functioning.

  • Silicone elicits antibody responses and immunological abnormalities,according to a study of 40 women who had received implants more than ten years earlier. Among these women, 60% had an elevated ratio of helper T cells to suppressor T cells; 20% had a blockage in particular functions of T cells and natural killer cells. (Toxicology Industrial Health 8:6 [November/December 1992], 415-429.)
  • Scientists at the University of California at Davis reported that evidence suggests that the degradation products of silicone inactivate CD8+ suppressor T cells (key immune cells) and thereby lead to an inflammatory state in the body. (Food and Chemical Toxicology 32:11 [November 1994], 1089-1100.)
  • The activity of natural killer cells is significantly suppressed in at least 50% of women with silicone implants observed in a study; this puts the women at a higher risk of developing cancer. The same effect was demonstrated in animals; it was reversed upon removal of the silicone. (Toxicology and Industrial Health 10:3 [May/June 1994], 149-154.)
  • High levels of anti-nuclear antibodies (ANAs), immune markers associated with lupus erythematosus, were observed in ten of 11 women with implants reporting autoimmune symptoms. (Lancet 340:8831 [November 28, 1992], 1304-1307.)
  • When 500 women with silicone implants were examined, 30% tested positive for ANA levels; those women also had rheumatic symptoms. The results strongly suggested immune activation in women with silicone implants.(Current Topics in Microbiological Immunology 210 [1996], 277-282.)
  • Based on a study of 3,380 breast implant recipients, scientists state there is a sixfold increased likelihood that testing these women will show elevated ANAs; the longer the implant has been in place, the greater the likelihood. (Current Topics in Microbiological Immunology 210 [1996], 337-353.)
  • In a study of 111 women (with and without implants), those with implants had a statistically significant elevation of anti-silicone antibodies (immune cells focused against silicone as a foreign substance in the body); the highest levels were observed in women with noticeable implant rupture or leakage. (FASEB 7:13 [October 1993], 1265-1268.)
  • Researchers at the University of Wisconsin at Madison School of Medicine reported that autoantibodies of unclear significance may be found in 5% to 30% of women with silicone breast implants.(Archives of Internal Medicine 153:23 [December 1993], 2638-2644.)
  • Researchers at Monash University in Clayton, Victoria, in Australia, found that women with silicone implants (70 were studied) have elevated levels of autoantibodies to collagen, in a manner highly similar to women with lupus and rheumatoid arthritis. (Current Topics in Microbiological Immunology 210 [1996], 307-316.)
  • Among 310 symptomatic women with silicone implants, there were elevated levels of novel autoreactive antibodies to silicone associated antigens(a specific type of heightened immune response) compared to healthy women without implants. (Current Topics in Microbiological Immunology 210 [1996], 327-336.)
  • Scientists at the Technical University of Munich in Germany examined 239 breast implant recipients and found the following immunological abnormalities: levels of complement C3 were elevated in 42% of the women; complement C4 was elevated in 21%; and antithyroglobulin (an antibody that attacks a substance in the thyroid gland) was higher in 28%. (Annals of Plastic Surgery 36:5 [May 1996], 512-518.)
  • When silicone leaks from implants, immune cells form granulomas (microscopic lumps) around the droplets; the granulomas are capable of severely disrupting the immune system. Silicone plays the role of an adjuvant, providing constant nonspecific stimulation of the immune system.(Journal of Investigative Surgery 9:1 [January/February 1996], 1-12.)
  • Typical symptoms associated with silicone include cognitive dysfunction, short-term memory loss, Sjögren's syndrome (dryness in glands, such as the mouth, kidneys, eyes, and lungs), scleroderma, rheumatoid arthritis, dermatomyositis, severe joint and muscle pain, incapacitating fatigue, swollen lymph glands, skin problems, peripheral numbness, multiple allergies, headaches, hair loss, sunlight sensitivity, central nervous system disorders (similar to multiple sclerosis), and others.
  • Among 176 breast implant patients examined by doctors at the Hospital for Joint Diseases, Orthopaedic Institute, in New York City, the most frequently reported symptoms were chronic fatigue (77%), cognitive dysfunction (65%), severe joint pain (56%), dry mouth (53%), dry eye (50%), hair loss (40%), and difficulty in swallowing (35%). (Seminars in Arthritis and Rheumatology 24:1 Suppl 1 [August 1994], 29-37.) [SOURCE]

It's an important ingredient ... possibly the most relevant one. But I can't be sure. I only know it played a part. Apart from the FACT that my body was attacking itself, autoimmune diseases, such as Lupus, are a known cause of Avascular Necrosis.

INGREDIENT #2 (Hormones & Blood Clotting):

I believe that another important element of my perfect storm was blood clotting. Before Mirena, I'd never had any clotting issues. But when doctors were trying to determine what caused me to develop Avascular Necrosis, my blood tests revealed a clotting disorder. The link between hormones (which are used in Mirena IUD) and clotting is also something that has been researched. Clotting is an obvious cause of Avascular Necrosis. If the blood hardens and can't get to the bones, they deteriorate.

Here is what research has discovered about clotting and Hormone Therapy (HT), which uses one or more female hormones, commonly estrogen and progestin and sometimes testosterone, to treat symptoms of menopause:
  • Doctors have long known that taking estrogen increases a person's risk for blood clots. Generally, this risk is higher if you use birth control pills, which contain high doses of estrogen. Your risk is even higher if you smoke and take estrogen. [SOURCE]
  • Estrogen pills raise older women's risk of blood clots, but not as much as supplements that also contain progestin, according to new data from a landmark government study on more than 10,000 women. [SOURCE]
  • In 2002, the WHI linked estrogen-progestin pills to heart attacks and breast cancer and found that they also doubled the risk of blood clots. [SOURCE]
  • HRT is regularly prescribed to women suffering from the effects of the menopause. Previous studies have shown that taking HRT is associated with an increased risk of venous thromboembolism (VTE), a blood clot in the vein which can be fatal.

The manufactured hormones used in Mirena are known as progestogen, one of the five major classes of steroid hormones, which includes progesterone. It is a second generation synthetic progestogen, also known as Levonorgestrel (LNG). It is usually referred to as the "active" ingredient in Mirena. It's probably also important to mention that long-term steroid use is a known cause of Avascular Necrosis. I have never been exposed to steroids, except for the steroid hormones in Mirena.

There has not been much research on this very specific hormone (LNG) and its relation to clotting. But I find it very interesting that there is a clinical trial titled, "The Effect of a Levonorgestrel-releasing Intrauterine Device (IUD) Versus a Copper Containing IUD on Risk of Blood Clots."

I have had my eye on that trial for a LONG time, but the status of it does not seem to ever change. I'm staying tuned though ... patience is a virtue ... especially when it comes to clinical trials of utmost importance to women's health.

Here are two warnings now provided about using Mirena IUD:
  • Women with a weakened immune system (often cause by diabetes or by chronic use of steroid medications) should be monitored carefully for signs of infection after insertion or removal of Mirena. (Chronic use of steroids?? ... that's weird -- Mirena IS a chronic use of steroids)
  • If you have a blood clotting disorder or if you take "blood-thinning" medications, your healthcare provider may need to monitor you more closely while you are using Mirena.

INGREDIENT #3 (My family medical history):

It wasn't until very recently that I actually had my FULL family medical history. I learned that I had a grandfather with clotting issues, and that I have a grandmother with Rheumatoid Arthritis who has also been diagnosed as "Pre-Lupus." Would knowing this earlier have made a difference? I really can't say for sure. My doctor never mentioned these types of warnings to me. Had I done more research on my own before using Mirena, and had I fully known my family medical history, it's possible that I never would have used Mirena.

And I guess that very idea leads me to write all of this. I share my perfect storm, because I want others to make educated choices about their bodies. I want others to know what hormones and silicone CAN do to your body.

Believe it or not, there is more. Research has also shown that LNG causes a decrease in bone mass density and that it could cause osteoporosis. Research has also shown that the daily release amounts of LNG are 1.5-fold higher in women with a low body weight OR within reproductive age. The LNG can also become systemic, meaning it affects the ENTIRE body (and not just the cervix, which it is promoted to do). You can read about all of those factors and others here.

One doctor thinks it was the hormones. Another says it was the steroids. Another doctor said it was a genetic predisposition triggered by Mirena. Some people say its because "I don't eat my vegetables," and they dismiss Mirena as a cause altogether. As ANNOYING as that last one is, I'll give people the benefit of the doubt -- because it is a possible factor.

But I don't think it's as simple as any one of those. When combined, those factors can create a perfect storm.

More than anything
-- I believe that had I never used Mirena IUD, I would still be healthy and fully physically able. I believe that I wouldn't have developed an autoimmune condition or Avascular Necrosis without it. That was proven when I had Mirena removed, and the deterioration stopped. Future blood tests will have to determine if my autoimmune condition is temporary or permanent.

The important thing to know is that if you are using Mirena, the ingredients for a perfect storm are there. Please don't wait around to see what type of damage it could cause for you.

"And when he got into the boat, his disciples followed him. And behold, there arose a great storm on the sea, so that the boat was being swamped by the waves; but he was asleep. And they went and woke him, saying, “Save us, Lord; we are perishing.” And he said to them, “Why are you afraid, O you of little faith?” Then he rose and rebuked the winds and the sea, and there was a great calm. And the men marveled, saying, “What sort of man is this, that even winds and sea obey him?” -- Matthew 8: 23-27

Please read, sign and share this petition for more testing on Mirena IUD/Skyla IUD:


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