A Fragile Body, A Tough Mind


I got great news today. The doctor seems to think that my right hip is actually improving. From my X-rays, he commented that there are signs of revascularization, meaning that the circulation has been restored and the bone is being revitalized. That was the hopeful outcome of having core decompression surgery in the early part of 2012.

This was very surprising to me, since before my appointment I felt confident that he'd be ready to schedule my next hip replacement. Instead, he offered me a cortisone injection into my joint to possibly relieve the pain. I'd had one in my bursa [a sac adjacent to a joint], but never in the joint.

I was taken to a room that I had never been in before. It was large and bright with a single table in the middle of the room. Everything was white or silver. It reminded me of a surgical room in a hospital. They monitored my heart rate and gave me a nerve block before injecting me.

The nurse told me that they don't usually do the injections "on the fly" like that, but the doctor insisted. When she was helping me to prep for the injection, she said "He [the doctor] said you'd be an easy patient. He said your 'tough.'"

"Tough," I thought, as my mind echoed her unexpected word. I must have let out at least a small smile, though I'm not sure if that was purely mental or if I actually wore it on my face. She asked me to list my past surgeries and medical history. As I recalled something new to add to her list every few seconds, I started to think about it again.


My doctor, who knows my fragile state better than anyone, called me 'Tough.'

Do me a favor and do a google image search for "tough." [click on the image, type in "tough," and then click the camera icon in the search bar].

What do you see? Mud obstacles, muscular men, professional fighters, people running races, toned women with 6-packs, Rambo, people lifting weights.

Are those results what you think of when you hear the word "tough?" For me, the results were expected. When I think of a "tough" person, I do not think of a skinny, frail, disabled person like myself.

The only thing that struck me as odd was that all of the tough people in the images look so angry. I don't think I saw a single person smiling. Are tough people not supposed to be happy? Are they not expected to smile? I smile. Again, I just don't fit the bill.

The definition of tough is just about everything my body is not.

1. strong and durable; not easily broken or cut.
2. not brittle or tender.
3. sturdy; hardy.
4. capable of great endurance.

My body is not strong. My body is not durable. My body is easily broken and cut. My bones are brittle and tender. My body is not sturdy or hardy.

But then I got to number 4. I'm not always capable of great endurance, but I have learned to endure. The unpleasantness associated with endurance comes in many forms and circumstances. And for that reason alone, I allowed the word to sink in and I decided to take ownership of it. I actually liked being called exactly what I thought I was not.

My body is weak. But I am not.

After my injection, I hopped down off the table so quickly that the nurse asked me to sit back down to make sure my leg was stable.

"It feels good," I said, as she lowered me back to sitting position.

I'm not sure if it was the steroid injection or being called "tough" that had me feeling like a Transformer. Perhaps it was both.

After learning that I wouldn't be able to drive home, I called my hubby to come and get me. By time I was finished, he was in the wait room with my crutches in hand.

"I don't need those," I said.

The nurse's eyes read like my mother's, telling me to 'be careful,' but from her smile I read, 'you go girl.' As I walked out of the building with my arm looped in with my husbands, I realized that in those moments, and many other moments that spanned more difficult circumstances, I was tough. When it counts, when my body is not tough, I am still tough.

I went back to work and soon it was time for my youngest two children to do their holiday performances. My almost-3-year-old [who is built like a linebacker at nearly 35 pounds] ran over to me, and for the first time in more than two years, I lifted him up, rested him on my hip and walked several steps over to my husband without a single limp. I didn't even realize I wasn't limping until my husband told me. I'm so used to walking straight to my husband after lifting my son, because I have to quickly pass him off due to the pain. He's still young enough to want to be held often. And he never seems to give up on me even though I'm sure that he's aware of my limitations by now. But this time, there was no pain. And I held my son until he was too antsy to be held any more. And when I lowered him back to the ground, still no pain. And when I sat on the floor with him in my lap, still no pain. For a long time, these types of interactions, especially with my youngest, have been limited by my pain.

Only time will tell if the injection will actually help. The numbness was still in effect at the holiday party, but those tiny moments still felt triumphant. And just maybe, being able to look forward to and celebrate the tiny triumphs is exactly what makes me "tough."

Maybe, it's what makes you tough, too.

Moments like those, though few and far between in recent years, help me to endure.

Sure, the numbness helped. But so did my mentality.

Maybe it's time the google image search for "tough" offered a new perspective. Because as of today, my definition of tough has less to do with the body and more to do with the mind, the soul and the spirit.

"Therefore, strengthen your feeble arms and weak knees. Make level paths for your feet, so that the lame may not be disabled, but rather healed. Make every effort to live in peace with all men and to be holy; without holiness no one will see the Lord." -- Hebrews 12:12-14

The Neverending Story


If you are looking to read about a young boy named Atreyu who flies on a luckdragon to a magical land called Fantasia, I'm afraid you've come to the wrong place. I didn't mean to mislead anyone, but instead I'd like to offer my real-life neverending journey that starts with me racing through fields of tulips at the age of 32 and continues through to my current state of moving like an 80-year-old at the age of 34.

OK, so I never actually ran through a tulip field, but if I could go back, I certainly would. I promised an update on my ankle a couple of weeks ago. Better late than never?

If I consider myself the main character of this story, there are a few things you should know about me in order for this post to play out properly. I have had four surgeries, including a hip replacement, which were a result of developing Avascular Necrosis (bone deterioritation due to a lack of blood supply) in my hips and right shoulder. I'm angry, because I believe that the Mirena IUD triggered my condition, yet there are no trials or studies to confirm nor deny that. I only have my experience and the bits and pieces of information gathered here on this blog. And then there's intuition, I have that, too.

This blog started as a way to chronicle my experience after being diagnosed, but it grew into mounds of online research that was too overwhelming to bear at times.

I recently returned to my doctor's office for X-rays on my ankle. The experience was all too familiar.

Take your clothes off and put this on.
Lie down on the table and try not to breathe for a few seconds.
Get dressed. Go back to the lobby and wait.

The doctor looked at my ankle X-rays and stated that he didn't think it was Avascular Necrosis. Instead, he said, it was likely the inevitable outcome of having really terrible bone structure in my ankles. I was born that way. I have no arches. And my feet and ankles are hideous. Always have been. If you have nice, normal feet — I envy you.

You'll need to see a foot and ankle specialist.
You might need to have your feet and ankles rebuilt.
But first ... my doctor said I should have another MRI to rule out Avascular Necrosis as the cause of ankle pain, which was causing me to limp [more than I already was] for weeks without any relief.

I was relieved to hear that he didn't think it was Avascular Necrosis, but nervous that it still needed to be 'ruled out.' If it was AVN, that meant that there was still a larger issue. It would mean that I was still clotting and the blood wasn't reaching my bone. The good thing about all of the damage that was done to my body, was that it was done. Instead of acquiring new damage, I was just repairing the old damage. I could handle that. Also, if it's not AVN in my ankle, that means that I have my first non-Mirena-related diagnosis in two years. In my twisted way of thinking, that's a victory. I really don't want to blame everything on an IUD. I promise.

So, I scheduled the MRI. And then the ankle pain stopped. That was odd.

I'm slow to update on this, because now I don't even want the MRI. I know I should 'rule it out' and get it over with, but my ankles doing OK now, so maybe I should just enjoy that while it lasts? If I get bad news, I'll feel compelled to act. But if I don't know, I don't have to do anything. On the other hand, if it is AVN, it will only get worse and I need to catch it early. Even if it isn't AVN, he'll want to refer me for a possible foot re-build. He was talking about rebuilding my ankle using bone from my foot. That sounds unpleasant. So, yep, I just decided. I'm putting this off for now.

I don't believe it is AVN in my ankle. If it was, I highly doubt the pain would have stopped, instead it would have worsened. Maybe I did something to my ankle and I just don't remember? On any given day, I dodge 30 hot wheels and 5 tiaras on my way out the front door. Or maybe my feet are just severely messed up and I'm just putting off a 're-build' until later, you know, until it's more convenient to have my ankles rebuilt [sense the sarcasm?].

Ahhhh. Ignorance is ... not really bliss.

Anywho — I'm still going back to see my doctor in 2 weeks because I also had X-rays done on my right hip and I can feel a second hip replacement growing closer each day. I'm limping. It takes me about 20 seconds to go from sitting to standing, either because of the pain or because my hip locks up or 'pops' when I do. And not the really cool lockin' and poppin' like those hip hop dancers do, but the really bad lockin' and poppin' where you're reminded that your very structure is falling apart each time you attempt to rise to your feet.

Part of me wants to wait it out, because I don't want to have surgery again. Another part of me wants to get it over with.

I want to take dance classes for the heck of it and run another 5K just because I can. I want to run through a field of tulips. None of those things are possible in my current condition.

It's not that I'm not living well — I am. I going and doing, but the limitations are killing me and the pain is annoying. As much as I try to tell myself things are fine the way they are, I still desire more. Maybe that's just greed, I'm not certain.

And so, for the main character of this post (me!), the conflict is within me. I just need to make another decision.

And the neverending part is knowing that I will always have to make decisions like this. Even when both hips are replaced, my replacements will need to be replaced one day. My replacement replacements might even need to be replaced. That's a lot of replacing.

So, my story continues. And the questions constantly looming through it all is 'why?' Why did this happen to me and why have similar things have happened to other women who used Mirena IUD? And why doesn't anyone with the ability to do something about it, actually do something about it?

Where's my luckdragon when I need him? Perhaps he can take me to a magical land where companies manufacture things without any deception. And perhaps, I'll get a new set of magical hips and ankles while I'm there.

Not the end.

My Strength and Weakness


Along with the mental strength that came from learning to rely on my mind when I simply couldn't rely on my body, came a deep sense of worry. I consider it a weakness.

While learning to be mentally strong in the face of adversity, I was also realizing some sad truths about how fragile I am — about how fragile we all are.

The last two years of my life have changed me forever. I'll never be the same, physically or mentally.

My latest worry involves a new pain that started in my ankle just this past Wednesday, I'm waiting to see my doctor this coming week to determine what it might be. I never did anything in particular to my ankle to injure it. The pain seemed to come out of nowhere, much like the pain in my left hip that kicked off a downward spiral of health issues and surgeries. As much as I want to believe that it is not AVN in my ankle, it very well could be. So, now I'm dealing with pain in my left ankle and my right hip, which is still pending replacement.

There have been times — many times — when I thought the worst. I know this will all seem dramatic. It is. But this is how my mind works now. When I learned that my bones were deteriorating in several places at such fast rates, I thought that there was something bigger happening. I thought I had bone cancer, leukemia or lymphoma, and I still think that at times.

At one point, I thought I might have cervical cancer and asked for a papsmear despite the fact that my insurance wouldn't cover it. Due to changes in insurance, they would only pay for one pap every five years. I didn't care about the cost, I just needed to know. I've worried about breast cancer. I've worried about blood clots and heart palpitations.

I've worried.

I've even worried that I'm worrying too much. Have I become a hypochondriac? I'd like to think not, because my symptoms are real and they stem from real events. Also, my worries, based on symptoms I've experienced, are not far-fetched. I've yet to be tested for most of things I worry about, because I know that even though I worry, I tend to think too much.

I do not share these things because I want others to worry. I share these things because I want others to understand the downside of the struggles, apart from the disabilities incurred. The upside was the mental strength that I gained; the ability to forge on and better myself in ways I never intended to before my AVN began. I have learned to appreciate all of my remaining abilities. I've learned to appreciate myself from the inside, out.

When I run into people and they ask how I am doing, it's easy to say "much better." That is the truth. I am back on feet and learning to spend equal amounts of time off of my feet to manage the physical pain. I'm able to work. I'm able to care for my children and be involved in their lives. That is leaps and bounds of improvement compared to last year.

However, I wouldn't dare go as far as to say I am "all better." My harsh lesson in fragility has affected me more than I even realized a few months ago. Sometimes, I just feel like I'm waiting for the next bad news. For someone else, ankle pain may mean little to nothing. It is likely that most wouldn't assume anything beyond a sprain or inflammation. That is the same non-chalant mentality that I had about my left hip before my AVN diagnosis. I thought it was childbirth-related. I thought it was inflammation. I never could have imagined where that initial pain was headed, and what impact it would have on me and my family.

I'm afraid that my days of a non-chalant mentalities are gone. I'm afraid that my ankle pain is going to be AVN.

I still have that inner spark of strength that gets me through. I know how to tap into it when I need it most. I attribute that strength to my faith and my family, and also to myself.

I've grown strong. But I've also grown weak. At times, it can be a struggle to keep the strong side of scale more weighted than the weak.

"My flesh and my heart may fail, but God is the strength of my heart and my portion forever."
-- Psalm 73:26

Petition for Testing of Mirena and Skyla IUD

I've created a petition that requests testing of Mirena and Skyla IUD for a potential connection to autoimmunity and blood clotting. To view and sign the petition, please visit:

Mirena IUD Lawsuits: Why You May Not Have a Case


I've gone off the blogosphere for a bit. I just needed a break after I got the wind knocked out of me pretty hard [figuratively speaking].

After the Mirena IUD caused the Perfect Storm within my body, I thought long and hard about a potential lawsuit. I couldn't decide if that was the route I was going to take. I didn't know that it would be worth it in the end. I didn't want to put my life and my experience on the "stand" for others to judge.

More than a year [plus] after my health went from nearly perfect to absolutely scary, leaving me disabled and living with an autoimmune disease, I decided I'd go for it. I decided it was worth a shot. My initial lawyer seemed convinced I had a case. I had built up a good portion of it here on this blog. That lawyer discussed my case with another well-known lawyer from my area. The lawyer joked that I could call him if I ever needed a law office job. They, and others, referred to me as "Erin Brocovich."

But clearly, I didn't have the evidence as down-packed as she did.

The lawyer that I was referred to [because they were more familiar with cases regarding Mirena] reviewed my case. He seemed confident enough, but asked that I sit in on a call with another lawyer in his office who worked autoimmune-related lawsuits regarding breast implants [silicone in breast implants and silicone in Mirena are one in the same]. She concluded that, unfortunately, there was nothing I could do.

For days, those words repeated in my head.

"There was nothing I could do."

"There's no clinical trials to prove my case."

"There was nothing I could do."

"It's so unfortunate."


I took the news as gracefully as I could and told her that I at least had peace with myself about the whole ordeal. I was confident that Mirena caused me to have Avascular Necrosis and Sjogren's Syndrome. The timeline alone, even minus all of the research I'd done, was telling enough. I told her that I understand that the court system was a complex system.

An unjust one in this case, I thought, but didn't say aloud. Though I'm sure she knew that all too well.

The backstory that she shared with me was interesting. Her firm previously represented thousands of women who had autoimmune effects from silicone breast implants. They did studies in their lab and felt confident that they had proof. The scientists witnessed and reported that the silicone had produced an autoimmune reaction.

In court, the judge said that their data could be biased. And he appointed his own panel of scientists to run tests. That panel found no relation. And the case was dismissed.

Hundreds of thousands of women with autoimmune reactions and it was all just a ... coincidence?

Potentially the same number of women who used Mirena IUD and were affected by the silicone in it, but that, too, is just a ... coincidence?

So, here is the kicker. When I mentioned before that there were no clinical trials to prove my case, I'm speaking of a few studies with opposing results. My fate in a court of law was determined by a few studies with opposing results. Studies that I can't even seem to find record of online beyond this:

"Only a few studies investigating the risk for VTE with progestin-only contraceptives exist. A recent summary of the first of these 5 published studies concludes that (a) the risk of VTE with progestin-only contraceptives is poorly investigated and (b) that there may be a slightly elevated VTE risk . Since then, a study has shown a statistically significant 3-4 fold increased risk of VTE with injectable progestin-only contraceptives, but no increased risk with progestin-releasing IUD. An additional study also suggests that progestins-only contraceptives may be associated with a higher risk for VTE. While a very recent review article has concluded that “progestogen-only contraceptives are not associated with an increased risk of VTE”, the article did not take reference to the two most recently published studies, references ref 8 and 9; its conclusion is, therefore, not up-to-date." [SOURCE: http://patientblog.clotconnect.org/2011/02/02/progestin-only-contraceptives-and-blood-clots/]

Wait ... so there doesn't seem to be a risk, but we aren't really sure? There is one, single study [that I can find] that specifically compares clotting from an LNG-releasing IUD (Mirena) with a Copper IUD. [SOURCE: http://clinicaltrials.gov/ct2/show/NCT00584610] The status of that trial is "unknown" and it appears it hasn't been updated since 2010, with no results to show.

Do you know what this means? There is not a single, completed clinical trial that shows the potential relationship between an LNG-releasing IUD and clotting. Not a single one.

So forget the FACT that my blood test revealed clotting just after having Mirena removed. And forget the FACT that months later, my blood tests revealed I wasn't clotting any more.

Forget the FACT that Avascular Necrosis is caused by clotting. If the blood can't get to the bone, it dies. Forget the FACT that my Avascular Necrosis never spread to my left shoulder after having the Mirena IUD removed.

Forget the FACT that I never had any autoimmune issues before using Mirena or that, now, I have been diagnosed with an autoimmune disease.

Where are the clinical trials or studies that research the potential [or in my mind probable] relationship between the silicone in Mirena and autoimmune response? Oh right, there isn't one!

And guess what that means -- that I, and possibly you, do not have a case regarding autoimmunity and clotting. For now. More importantly, it's not just about having a case. It's about getting answers. It's about peace of mind.

A word to the wise: Skyla IUD uses the same ingredients and components as Mirena IUD. The only difference is that the daily release amounts of LNG are expected to be lower. No clinical trials about clotting and autoimmune disease for Mirena means no clinical trials about clotting and autoimmune disease for Skyla IUD.

If you are affected by clotting or autoimmunity with either of these devices, as of now, you have no "proof" as far as a court of law is concerned. It didn't matter what my blood tests showed and how my body reacted specifically to the device. Though the proof seems evident, obvious even, in many cases, your case doesn't stand a chance without a solid amount of studies on these relationships. And those studies simply do not exist. If they do, I've been unable to find them.

This is why lawsuits against Mirena are focused on IUD perforation. A court of law cannot argue that the IUD migrated into a women's body and had to be surgically removed.

Unfortunately, I am not Erin Brocovich. I only wish I could be as thorough and had the time to go about town finding all of the answers. But I don't work for a lawyer. I have a full-time job. I have three children. I am in graduate school part-time.

My time is up to pursue my case in a court of law because of the statute of limitations, which says that I have only two years from the time of insertion to take legal action. That time has come and gone.

I've been used as "poster child" for adverse effects of "Mirena IUD." My story has shown up on lawsuit website's all over the internet. But the irony of it all is that the one lawyer who could have represented me, didn't. Too much money. Too much time. Not enough data. The outcome was too predictable.

For me, it was never about money. It was about awareness. It was about holding a company accountable for not providing the proper warnings and doing the proper research. It was about making wrong, right.

If you believe you have suffered from autoimmune effects from the silicone in Mirena IUD, lawyers probably can't/won't represent you either. If you've suffered from blood clotting from the levongestrel (LNG) used in Mirena IUD, they probably can't/won't represent you. I'm not saying you shouldn't pursue a case or lawsuit. If your life was negatively affected without proper warning, you should do what is best for you. But I wanted you to know what you are going up against.

We need data. Not just about silicone. Not just about LNG. But specifically, the silicone and LNG used in Mirena and Skyla and if/how they relate to clotting and autoimmunity.

Now may not be our time. But I do believe our time will come. And I hope I have something to do with it.

Now the question playing over and over in my head is "What's next?"

Only time will tell, but we can start with this petition:

If you think that there needs to be more studies/trials about the potential connections of Mirena IUD and Skyla IUD to clotting and autoimmunity, please sign the petition and share it with your friends and family.

If you've stuck with me through this entire post, thank you. It's been a while. And I've had a lot on my mind.

Getting these answers is not about getting rich, or getting revenge. It's just about our right to know.

I Am Woman, Hear Me Roar


Despite having more pain-inducing nerve receptors than a man, I endured childbirth, and then willingly endured it two more times. It's a good thing my body was built to be more flexible. Contrary to popular belief, women are not made of sugar and spice -- our bodies actually release more sulfur than a man's. My liver is smaller, so it has to work harder. Having estrogen means that my body will produce about 8 percent more body fat than a man's. And on top of that, I have less connective tissue and thinner skin, making my fat more visible.

I am perfectly made. I am woman.

I have an entire reproductive system in my pelvis. I have gonads. They are in my ovaries and they produce eggs. Every month, my unfertilized eggs dry up and leave my body through my uterus. About a week before that happens, I experience acne, bloating, fatigue, backaches, sore breasts, headaches, constipation, diarrhea, food cravings, depression, irritability, and difficulty with concentrating or handling stress. Meanwhile, a group of lipids called prostaglandins, cause me to have severe abdominal cramps for a few days. When my eggs are fertilized, I grow a human inside of my body over the course of about 280 days, and then I push it out and feed it with my boobs. I have some pretty amazing parts, but they do come with great risks -- some of those risks could lead to infertility, miscarriage or the loss of a child. We, unfortunately, don't have any special parts built to handle the unexpected reality of such things.

With or without child. I am woman.

For those of us who do not want a child, or additional children, we get to choose from a wide range of contraception, sometimes prescribed without important warnings that could save us from negative, life-altering effects. And then there's abstinence, which is a great choice for an unmarried woman, but not really a choice for a married one. There's the option of having our tubes tied or our husband's having a vasectomy, if they can be convinced that they can survive a weekend of pain and anguish. Or we can just be like Michelle Duggar, and maybe then we could have enough children to open up a small family-run carnival. The idea of having that many children is so far-fetched that it might just get you your own reality show. Not to mention, a choice to reproduce without any restraint would be made difficult by a world that is tailored for a family of four.

I make difficult decisions. I am woman.

I've got plenty of nerve and loads of endurance. I smell like roses, despite my sulfur. I have the thickest, thinnest skin you could imagine. I have fat and I have gonads.

I am not bitter. I am proud.

I am woman. Hear me roar.

Skyla & Mirena: 2 IUDs in a Pod?


Oh, how my heart aches thinking about all the unexpected aches that more women will experience from Bayer's newest contraception, which appears to be Mirena, Jr.

The FDA recently approved a new IUD, manufactured by Bayer. It's called Skyla.

It's a pretty name. Sounds harmless. The name Skyla is Dutch in origin. It means scholar, or shield of knowledge.

So, for name's sake -- let's shield ourselves with some knowledge.

"The [Skyla] reservoir is covered by a semi-opaque silicone membrane, composed of polydimethylsiloxane and colloidal silica." [SOURCE: http://www.rxlist.com/skyla-drug.htm]

Same as Mirena, Skyla uses silicone, which is known to cause autoimmune issues that will cause your body to attack itself. The result of that can only be left to the imagination. It can affect your body in countless ways and possibly cause permanent damage, including lifelong autoimmune disease. In my case, I was diagnosed with Sjogren's Syndrome (an autoimmune disease) after using Mirena.

Also like Mirena, the active ingredient in Skyla is levonergestrel (or LNG), which is a hormone (a second generation synthetic progestogen). It's no secret that hormones are linked to an increase in clotting. But in my opinion, it is not something that is discussed enough.

Just six months after having Mirena inserted, clotting caused me to develop Avascular Necrosis (bone deteroriation due to lack of blood supply) in my hips and shoulder. You can read MY STORY to learn more about the serious effects AVN has had, and still has, on my life.

The difference between Skyla and Mirena is that Skyla is intended to release 13.5 mg of LNG, while Mirena intends to release 52 mg of LNG. Skyla seems the better option, having less hormones involved. Though, I would never go out far enough on a limb to suggest to any woman that a hormonal contraception is a good choice.

In my opinion, the daily release amounts of LNG cannot be trusted. One study I previously shared showed that women with low body weight or high SHBG (Sex hormone-binding globulin) levels, increased amounts of LNG were released. That same study shared that, in these cases, the LNG could also become systemic (meaning that it affects the entire body, and not just the uterus, as it is intended to do).

Skyla, unlike Mirena, is being marketed to women who have not had children. It is also marketed as a 3-year IUD, whereas Mirena is marketed as a 5-year IUD.

As I've stated before in my blog, I am not a doctor. I only wish for women to educate themselves about the harmful possibilities that could affect them. I always advise women to take a close look at their family medical history. Based on my experience and research, if autoimmune disease or clotting is a your in family health profile, I would suggest avoiding Mirena and Skyla altogether. There are other warnings provided by Bayer -- please read those also.

If you are able to explore other options for birth control, I'd suggest staying away from synthetic hormones. They are not good, natural hormones.

Above all, make an educated choice. I did not, and because of that, my health profile went from nearly perfect to just plain scary.

Don't be fooled by a pretty name. It's what's on the inside that counts.

Please visit this link to learn more: Mirena IUD Lawsuits Don’t Deter Bayer From Getting New IUD Approved

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

Being Handicapped: Lessons Learned


My handicapped decal expired on the last day of January. I attempted to live without it, but I caved today [a mere 11 days later] and called my doctor for an extension (which he predicted I would do). I really wanted to let the decal go, but the truth of it is ... I still need it with my pending hip replacement for my right hip, which is causing me a lot of pain. I had several reasons for wanting to give up the decal -- one being less judgement from others. I thought this would be a good opportunity to share some lessons learned with you all about being 'handicapped.'

1. If people treated everyone the way they treated me when I was obviously disabled, the world would be a happy place.

Seriously, I have never seen so many smiles or seen such kind actions from strangers as I did when I used a wheelchair or an aide. People will literally hop out of your way and apologize when they weren't even in the way to begin with. They will hold doors for an entire minute, waiting for you. They will let you cut in line. They will even be sweet to your misbehaving children. Just about everyone would smile at me. One time, a woman even stopped and asked if she could pray for me. It was great to be reminded that people cared. I'm still the same person, but now that I can walk without an aide -- strangers aren't nearly as nice to me. I actually think of this when I'm in public now. I try to treat everyone with the same type of kindness I was shown.

One of my favorite quotes is: "Be kinder than necessary. Everyone you meet is fighting some sort of battle."

Man, that rings true. Just because you can't visibly see what a person is dealing with, doesn't mean that there isn't more there. Let's be kind to one another.

2. When you pull into a handicapped parking spot, people will watch you intently.

I park. I hang my handicapped decal from my rear view window. I look around, and more often than not, someone is watching. I don't know if they are just plain curious about what my handicap is, or if they are waiting to make sure I am actually handicapped. Either way, they wait and they watch. Just the other day a couple pulled into a spot next to me. I had just parked and hadn't hung my decal yet, because I was getting some papers ready to take with me. I could feel them staring at me so I looked over and sure enough, they were. I hung my decal and got out of my car and smiled at them. I'll keep these experiences in mind, too, in the future. I'll give people the benefit of the doubt and trust that if they are parked in a handicapped spot, it's because they should be. If they are parking illegally, let the cops handle it by giving them a ticket and a fine. It's not your job [or mine] to determine who is really handicapped and who is not. It's also intrusive to ask a stranger about their condition.

What people need to understand is that handicapped decals do not necessarily mean that person should be in a wheelchair or have any difficulty walking. They may appear absolutely normal, but they could be fighting an invisible illness that dries out their organs, causes pain, constant dizziness, nausea or brain fog. There are hundreds of autoimmune diseases that affect people in different ways. Possibly, this is a problem created by the image on the decal itself. Regardless, we should give everyone with a handicapped decal the benefit of the doubt. It's the right thing to do.

3. Accessibility is a major issue.

First, think about all of the places you go within one day. Work, a public restroom, to a sports game, the store maybe? At work, cubicle walls made it nearly impossible to maneuver in a wheelchair. Racks inside stores are placed way to close together. Graveled and grassy terrain for sporting events are not user-friendly. Doors become your worst enemy -- Most do not have buttons that will automatically open the door for you or if they did, they didn't work (trying to open a door, while reversing a wheelchair and then getting through a door before it closes on you is not easy -- especially without lots of practice). And stairs, forget about it. You'd be amazed at how many places are only accessible by stairs. In order for increased independence for disabled people, accessibility HAS to improve. I can't help but to notice these things still. Even though I'm walking now, I will report anything I notice to a store manager or employee -- kindly, of course.

4. You can't expect people to understand what you are going through.

Daily life can be exhausting. It was for me, and some days, it still is. When I wake up in pain, I almost instantly become overwhelmed by everything I need to do that day. The simple things, like picking up milk from the store or just taking a shower, become very difficult things. And most difficult of all, no one really understands what you are going through. More often than not, the people in your life cannot "relate." People don't always understand your decisions when they don't understand your condition. They might even label you as "lazy" [that one hurts].

To gain a better understanding of others who are handicapped or living with an autoimmune disease, or anything else affecting their quality of life, please read "The Spoon Theory."

The Spoon Theory
by Christine Miserandino

My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.

As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?

I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.

I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.

Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.

She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?

I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.

I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.

I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.

We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.

When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.

I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.”

Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”.

After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can’t go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”

Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my “spoons”.

© Christine Miserandino

Certainly, I've learned many more lessons than this. But these are the ones that have stuck out for me. As I've said many times throughout my blog, perspective is a powerful thing. I hope that one day I can get past the need to use a decal. Unfortunately, I'm not there yet. And I'm afraid you all are just going to have to take my word for it.

Do you have others to add? Feel free to leave comments or your own 'lessons learned' below.

Flu Vaccine or No Flu Vaccine? That is the Question.


"So far this season, more than 2,000 have died in the U.S. of flu-related complications, a number which has "pushed the illness past the 'epidemic' threshold." " [SOURCE: http://thestir.cafemom.com/healthy_living/149564/flu_epidemic_2013_what_you]

It definitely doesn't help that my husband and I recently watched "Survivors" on Netflix. It's about a group of people who survived a horrible epidemic, which started out much like the flu does each year.

Unless you and your entire family can stay indoors and isolate yourselves from the rest of the world, you run the risk of getting the flu.

As a mom, I sometimes do get the urge to isolate my children. There is nothing worse than seeing your child sick or in pain. I have three children, and my youngest two are still in daycare. My children are constantly at risk of being exposed to infections and germs.

But I also believe they have built up stellar immune systems because of that.

Every year, when flu season rolls around, I have to ask myself: "Flu Vaccinations or No Flu Vaccinations?"

This is the first year that my children did not receive the flu vaccine. Since my own run in with bad health, which caused some distrust in medical professionals and medicine in general, I've really started to question things.

Still, I wonder sometimes if I'm just being a bit paranoid.

My children do receive most other vaccinations. I try to space them out in case they have a reaction to any of them. My concern with the injected flu vaccine is that it is the only childhood vaccine that contains thimerosal, a mercury-based preservative.

Thimerosal came into the limelight when a physician in England claimed to have evidence showing a relationship between autism and a combination of childhood vaccines, which formerly contained thimerosal.

"While no studies showed a link between any harmful side effects and the thimerosal in vaccines, the American Academy of Pediatrics and the Public Health Service agencies decided to remove thimerosal from childhood vaccines in 1999." [SOURCE: http://www.everydayhealth.com/autism/vaccines-autism.aspx

But it still remains in the injected flu vaccine.

As far as the link between thimerosal and autism, I'm neither completely sold or shut off to the idea. While scientific evidence debunks the connection, I believe that there are always exceptions ... that in certain children or adults, their bodies will react a certain way to any sort of chemical that is put in their body.

"For Gary Weitzen, executive director of Parents of Autistic Children (POAC) in East Brick, N.J., the research doesn't explain why his son began showing the signs of autism almost immediately after his 18-month childhood vaccines.

Weitzen tells stories of how his happy, boisterous 18-month-old boy would play peek-a-boo with the little old ladies who sat behind them in church every Sunday. "He would just erupt in joyous laughter," he says of his son's exuberant personality.

One Friday, the happy little boy got his shots and immediately got sick. "He never played peek-a-boo again," says Weitzen."

It's a compelling case, and I have to say that I can relate. There isn't any medical professional who will outright tell me that Mirena is the cause of my disabilities, but I'm pretty convinced that it is -- especially because the bone deterioration began after having it inserted, and stopped after having it removed.

Doctors can develop theories, but they can't always explain causes in totality, because the human body is a complicated mix of processes. It's difficult to pinpoint causes in some cases. And unfortunately, no one knows the cause(s) of autism.

I know what's it like to want to know a cause ... to want to know 'why?'

But to be clear, autism isn't my big concern with thimerosal.

According to Julia A. McMillan, MD, director of the pediatric residency program at Johns Hopkins Children's Center in Baltimore, there have been studies showing that methyl mercury, found in nature and even in many fish that we eat, can have harmful side effects resulting in intellectual and mental health problems. [SOURCE: http://www.everydayhealth.com/autism/vaccines-autism.aspx]

"A report published in the American Journal of Public Health, found that people who said they couldn't perform everyday tasks or engage in social and leisure activities because of a mental illness increased from 2 percent in 1999 to 2.7 percent in 2009. That increase amounts to nearly 2 million more people disabled by mental distress in the past decade, the report said." [SOURCE: http://abcnews.go.com/Health/reporting-mental-illness-rise-fewer-seek-treatment-study/story?id=14585730]

You really have to wonder, what's causing this increase in mental illness? I'm not saying flu vaccines are the cause, but I do have to question whether or not they could be a contributor. I think there are enough 'toxins' in plenty of other things that humans use and consume to help account for the rise in mental illness.

And yes, thimerosal is a toxin -- at least, according to Wikipedia it is.

"Thiomersal is very toxic by inhalation, ingestion, and in contact with skin (EC hazard symbol T+), with a danger of cumulative effects. It is also very toxic to aquatic organisms and may cause long-term adverse effects in aquatic environments (EC hazard symbol N).[10] In the body, it is metabolized or degraded to ethylmercury (C2H5Hg+) and thiosalicylate.[4]
Few studies of the toxicity of thiomersal in humans have been performed. Cases have been reported of severe poisoning by accidental exposure or attempted suicide, with some fatalities.[11] Animal experiments suggest that thiomersal rapidly dissociates to release ethylmercury after injection; that the disposition patterns of mercury are similar to those after exposure to equivalent doses of ethylmercury chloride; and that the central nervous system and the kidneys are targets, with lack of motor coordination being a common sign. Similar signs and symptoms have been observed in accidental human poisonings. The mechanisms of toxic action are unknown." [SOURCE: http://en.wikipedia.org/wiki/Thimerosal]

Here is a helpful article about requesting and ensuring a mercury-free injected flu vaccine, if it is in supply at your doctor's office: http://www.metrokids.com/MetroKids/January-2010/Should-You-Insist-on-a-Mercury-Free-Flu-Shot/

When the doctor's office opens back up tomorrow, I'm going to check with my pediatrician to see if they have mercury-free flu shots available. I might consider the injection without the mercury ... might.

The nasal flu vaccine, FluMist, does not contain thimerosal. However, it is not recommended for my youngest son, because he is under 2 years of age, and because he has a history of recurrent wheezing.

I could get the FluMist for my other two children, but I'm just not convinced that I should.

Unlike the flu shot, the nasal spray flu vaccine does contain live viruses. However, the CDC says that the viruses are attenuated (weakened) and cannot cause flu illness. But the listed side effects include runny nose, headache, wheezing, vomiting, muscle aches, and fever. So, I'm supposed to make my child ill for a vaccine that might not even prevent them from getting the flu?

Something about voluntarily giving my child a live virus does not sit well with me.

I would love to hear your opinion about why you do or don't allow your children to receive the flu vaccine? I'm not interested in a debate, because I'm still trying to be open-minded about the whole thing. I'm still trying to develop a solid opinion about the flu vaccine. Maybe I never will.

Also, I should probably mention that one of my three children has contracted the flu this season so far. We also had a quick, 24-hour stomach bug that went through our family, but it was not the flu. I also did not receive the flu shot this year.

Here is an interesting article that a co-worker shared, which explains the differences between the flu and other sicknesses that are floating around:
http://gokicker.com/2013/01/11/the-no-nonsense-non-alarmist-essential-guide-to-the-flu/ [Image credit: gokicker.com]

And below is a photo that I saw on Facebook of a manufacturer's label on a flu vaccine for adults [Source: http://www.facebook.com/photo.php?fbid=474144399315789]. The fine print reads: "There have been no controlled trials adequately demonstrating a decrease in influenza disease after vaccination with FLULAVAL."

"...I pray that you may enjoy good health and that all may go well with you, even as your soul is getting along well." -- 3 John 1:2

Jot 'Em Down, Scratch 'Em Off


Last year, while sitting around in all of my boring, handicapped splendor, I jotted down some things that I've always wanted to do. I took that a little further by posting a To-Do List on my blog. I guess that way, I could hold myself accountable.

It was about more than just jotting some things down ... it was all about being ABLE to scratch them off.

Traditionally, it's called a 'Bucket List,' but I thought that a 'To-Do List' sounded somehow better -- like there was some sort of urgency to them. I don't want them to just sit in a bucket in anticipation for my passing; I want to them to be present, actionable items.

Last year was all about survival and recovery. I had to get through four consecutive surgeries and get back to a place where I could physically take care of my family again. I was so focused on my recovery that I was left with little to no time to do the things that I really wanted to do.

I just needed to get better.

But now, I have. I still have a pending hip replacement ... which I'm thinking could happen this year. But I'm back on my feet and I've got things To-Do!

I guess you could say that last year lit a fire under my butt and this year, I'm jumping into action.

Why? Because I can, that's why!

  • FIRST -- During my recovery I got back in touch with a long lost friend -- my sewing machine. I did a lot of sitting, because for much of my year, it's all I could do. I started experimenting with some fabric children's books. A few weeks ago I had a unique product epiphany and I'm planning to open up my own Etsy shop soon with it. It's something I've always wanted to do. I haven't updated my blog in about two weeks, because I've been so busy trying to get some stuff ready for my store. Stay tuned for more information about that.
  • SECOND -- My husband and I are planning a trip to Atlantis in the Bahamas. We're looking online and working out logistics, but it's a MUCH-needed trip for us, and I'll get to knock two things off of my TO-DO List ... swimming with dolphins and going down the big water slide at Atlantis. We also plan to go snorkeling, and we'll probably spend some time in the casino, too. Who knows ... maybe we'll hit the jackpot!
  • THIRD -- I've applied to a couple of Master's programs. This one is a little bittersweet, because it's something I really want to do, but I'm not going to lie ... the idea of going back to school worries me a little with working full-time, raising 3 children who are very involved in different activities, and opening up an Etsy store. I definitely want to get my Master's, but I hope it isn't going to send my life into total chaos. Anywho - I've applied and plan to start on a part-time basis at some point this year.
  • FOURTH -- We're going to take a hot air balloon ride over the Shenandoah Valley this year!
  • FIFTH -- This is more of a hopeful, but not guaranteed. I'm really hoping to publish my 2nd children's book this year. I've been saying that for four years now, but I really hope I can pull it off this year. I published my first children's book in 2007. Since then, I've had two more children and four surgeries. In order to publish a book, I need to have money to publish and the time to promote. And I've been low on money and time lately. But if I managed things better, I could totally do it. It's a great book and I've been wanting to publish it for some time now. For more information about my first short story and activity book for children, visit my author website at www.sissyDscooter.com

In October of last year, I managed to scratch off The Color Run (5K) from my list, which was HUGE for me. In fact, reaching that goal is what inspired me to, not only set, but reach new ones.

It's possible that I could surprise myself and scratch a few other things off of my list - like winning a gold medal at the Lineberry Olympics this summer, or finding a series that I enjoy reading more than the Hunger Games. I might even add some more To-Dos. But only time will tell.

I hope to teach my children to celebrate life -- to set dreams and goals and make them happen -- no matter the circumstance. And I don't mean in a careless YOLO kind-of-way, I'm talking about really experiencing life outside of the hustle and bustle of every day shenanigans.

So, watch out TO-DO List ... I'm coming for you!

I'm going to be a good patient and take my doctor's advice: "Don't Stop Livin'"

"And my God will meet all your needs according to the riches of his glory in Christ Jesus." -- Phillipians 4:19


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