Adjusting My Path Accordingly

11.03.16

“The pessimist looks down and hits his head. The optimist looks up and loses his footing. The realist looks forward and adjusts his path accordingly.”

-- Robert Kirkman

I like to think of myself as an optimist -- especially when it comes to my health and well-being. Each time I come out of surgery, I set goals and prepare for the battle ahead. The battle is with myself and I have to keep my eye on the prize. I cannot settle. I can even go as far as making unrealistic goals in the hopes that I'll come out of this better... faster... stronger.

However, each new day has it's way of knocking me back to reality. I have to be realistic. I have to adjust my path accordingly. This is the case for so many things -- goals, expectations, feelings.

For nearly six years I have really wanted just one thing -- to walk normal again. Sure, no pain would be great, but again, experience has taught me that is not a feasible goal for myself. My circumstances have been a roller coaster ride filled with important lessons along every drop, flip and turn. And I know that the absolute wildest part of this particular ride is behind me. Surely, there are more rides to come, but I'm ready to hop off this one with a thrill-filled smile on my face, exit through the turnstiles and never get back on.

I return to work a week from today. I came out of surgery feeling strong and optimistic. That optimism carried me through two full weeks of recovery with hardly any wavering. At the height of my optimism, shortly after leaving my physical therapy assessment, I decided that my goal was to return to work completely aide free. That day, I'd switched from my walker to my cane and I was feeling really good about it.

The weekend passed and my first physical therapy session came on Monday. I got little sleep the night before because of the pain (it's the worst at night) and wasn't feeling as confident or as well as I'd hoped going into it. About 20 minutes in, I asked to sit and began to feel nauseous. I couldn't go on any more, because I knew it wasn't a sick feeling that would easily disappear. I reluctantly told my trainer that I was done for the day. That tore me to me pieces to say out loud. There were others in PT dealing with far worse circumstances and they weren't quitting. But I did.

As I waited for my dad to pick me up and the whole way home, I kept my head down and my eyes closed, wondering how I let this happen. I kept replaying the moment when I told the trainer I was sorry and she replied with, "it's OK -- your body has been through so much."

Eventually I realized that she was right. It had. And I was being really hard on myself. I was being overly optimistic, a touch pessimistic and not realistic. And it was not doing me any favors.

I went back to physical therapy on Wednesday, but I returned as a realist. I made it through the full session and left feeling like I'd made some progress. But the realist in me knew I still have a ways to go. The realist in me knew I wasn't going to go back to work aide-free by next week.

During my hip replacement, my femur fractured. This has lengthened the healing process and made it extremely difficult to get my gait back to normal. I'm still compensating for the pain and the muscles in my entire right leg are readjusting to new angles and trying to break out of old habits that have lasted years. I can't really expect all of that to just get better four short weeks after a hip replacement.

One thing I can say is that I will not be a consistent pessimist. I will not look down and hit my head. This entire experience from being diagnosed with Avascular Necrosis has seen me through stages of pessimism, optimism, and realism. When your body is your own worst enemy, it's sometimes easy to be all three in a single day. But these past 5-plus years have taught me many lessons about staying out of the pitfall of pessimism.

In the past, I've felt negatively about my progress, about the care [or lack thereof] from others, or about whether or not I'd ever be able to do simple things like paint my own toe nails or chase after my children. But I've learned to manage those negative feelings. I've learned to use my recovery time as a time to grow and evolve. In the silent, still moments of the day, I can wallow or I can refuel my heart and soul -- and though I do have moments where I do wallow, more often than not, I choose to refuel.

I put my faith and trust in a God that is so much larger than any circumstance. I can spend my days on the deck reflecting on His beauty, singing and reading words of His promise, and living in His grace. For me, there is no better way to deal with my realities and be reminded that I am loved, I am healing, and I can be patient with myself. I will miss these moments once I return to the hustle of a typical day.

Do I wish I could return to work and regular life without a cane? Of course I do. But I can't force things that aren't meant to be.

I have to be a realist. I have to look ahead. And I will adjust my path accordingly.

"In all your ways acknowledge Him, And He will make your paths straight."

-- Proverbs 3:6

Right Hip Revival

10.20.16

It's been 8 days since I had my right hip replaced. With it being my second replacement, I knew what to expect going into surgery.

I was feeling good about surgery, but as the nurse was prepping me before anesthesia, she went through a group of questions. One was: "If you die on the table, would you like to be revived?" I wasn't expecting that one. "Um, yes, please," I responded to the nurse. She walked out of the room and it was just my husband and I left. I went into panic mode and began to tell him my wishes for our children and family through my tears. He asked me to stop, but it felt so necessary at the time. After all, it was a possibility. I don't know why the fear set in with surgery this time after I'd already survived 4 others, but after the nurse asked me that, part of me felt selfish -- like I was taking a risk I didn't need to take. I was having this surgery to improve my quality of life, but what if it resulted in the absolute worst?

I took a few deep breaths, and I said a prayer.

I was taken to anesthesia, where I knew it wouldn't be long before I knew my fate. Time would begin to warp and I'd wake up in recovery ... or I wouldn't.

Low and behold -- I woke up in recovery and made some desperate attempts at eye contact with a nurse. I was in pain and under heavy medications, but I was alive. The hospital was in overflow so I ended up being taken to a wing of the hospital where the nurses didn't typically tend to orthopedic patients. They were all great, however, and did their best.

I think I was so joyful to be out of surgery that it completely masked any pain I was having. I was exhausted, but not completely drained like I was with my first replacement in 2012. I walked up and down the hall using a walker the night of surgery. It was a slow walk, but it felt as normal a walk as I'd experienced in nearly five years.

They discharged me from the hospital the day after surgery, which was a huge relief. I didn't need a blood transfusion this time and I couldn't wait to get home to my own bed.

Since I've been home, I've had good days and some really bad days. There's been struggles with figuring out how to manage pain, get rest, keep my appetite and just get around the house to do very mundane things. Getting from one side of the house to the other is my equivalent of a marathon right now. I'm still using a walker to get around.

When I first came home, my right leg felt like it weighed 200 pounds. But just in the last day or two, it's gone back to a normal weight and I'm able to lift it with some ease. I can already feel my range of motion in my right leg improve.

Before surgery, my husband noticed that I was starting to walk and sit with my right foot turned inward. I'm certain I was doing that because when my hip rotated outward, it hurt so badly it felt like it could break off. I got used to turning it in to avoid the pain. Now that my hip can turn out, my entire right leg down to my toes are getting used to being able to turn outward again. The first few days, I had terrible pains in my leg as it adjusted, but that pain lessens a little each day.

I'd hoped to start PT by now but I haven't yet, because my doctor held off for a bit until I could get some strength back. I should begin in-home PT in the next few days.

Although I'm sure there will still be some tough days ahead, I feel like the worst of them are behind me. It's honestly difficult at this point to even imagine myself with the strength and balance to just walk normal. But each step on my left leg is a reminder of what's to come for my right.

For now, I just need to be patient with myself and let the healing continue.

Ready to Remember

09.28.16

I wrestled with the idea of returning to blogging. It's been two years since my last post. I decided to keep some things close, and honestly, my focus was elsewhere.

This blog has unexpectedly found a unique audience of mostly women who are living out some terribly unfortunate side effects of using the Mirena IUD. I never imagined that was where this blog was headed when I started it with a simple reason to believe in January of 2012.

Nearly four years after that original post, I still have a reason to believe. Lots of them, actually. Two weeks from today, I'll have my other hip replaced. I've been putting it off for several years. Surgery is never convenient, but I know it's time.

I truly can't remember what it's like to wake up without pain, to walk without a limp or to even sit "indian style." But I want, so badly, to remember what life felt like before all of this began.

I don't want to re-hash the full story, but four years ago my life changed forever when I was diagnosed with Avascular Necrosis (bone death due to blood clotting) in both hips and shoulders. Four consecutive surgeries repaired my shoulders and replaced one hip. I was too exhausted after all of that to have the other hip replaced. I really hoped my right hip would repair itself despite my doctor telling me that wouldn't be the case. As it turns out, he was right.

It's progressively gotten worse with time. My right hip is beginning to collapse and once again -- I find myself crooked.

The surgery nerves are definitely starting to set in, but I'm feeling mostly optimistic about it. I've done this before so I have a better idea of what to expect. I know that hip replacements work wonders, because one half of me is strong and the other half of me is not. The hardest part, as always, are in those still, helpless moments after surgery. But I know I have to go through those moments to get to where I want to be.

In the past, it has helped to set some goals for myself. After my last set of surgeries, I completed a 5K. I know that isn't much to some people, but when I set that goal, it seemed impossible. But I did it.

This time around the thing I'm most looking forward to is less pain, more mobility and more strength overall. My new goal is to take an adult ballet barre class at my daughter's dance studio once I've recovered enough. I can't put a time stamp on it just yet, but I hope to make it happen before the year comes to an end.

In the last year, my daughter decided to hang up her pom poms to focus on dance. Watching her dance has really inspired me. I would never expect to be a good [or even a mediocre] dancer — that's not my goal. But I often admire her movement and strength. Her dancing reminds me of what life probably felt like before Avascular Necrosis. And it's just beautiful. Not even because her dancing is beautiful or because she's beautifully happy when she's doing it -- but because she moves so freely and that is a beautiful thing.

Unfortunately, my two youngest children were just a toddler and a baby when this began. They never really knew me as the physically strong, balanced, pain-free mom that I always thought I would be. My teenager knew that mom, but I'm sure that recent years have faded out that version of me in the same way that my own memory has.

I know that things will never be the same, but I'm attempting to remove as many obstacles as possible. And for now, that obstacle is a very damaged right hip.

"In the day when I cried out, You answered me, and made me bold with strength in my soul."
-- Psalm 138:3

The Bow in Her Hair

11.15.14

At a young age, bows made me cringe. Especially pink bows. They were so girly. More girly than I ever wanted to be.

More than twenty years later, the good Lord decided to teach me lesson. He gave me a daughter.

During pregnancy, I was sicker than I ever was with her older brother. I was told many times that my morning, afternoon, night and every moment in-between sickness was because it was going to be a girl. I heard it so much that I would've been shocked if it turned out to be a boy.

The time came to find out the gender. I laid on the table as the ultrasound tech slapped thick, cold goo on my belly and rubbed it around with a device as images of our baby appeared on a screen.

"It's a girl!" she said as my husband and I smiled at the expected outcome.

We were both excited that it was a her. We just didn't know what to expect. My husband has three brothers. I have one brother. We had a son.

"What would I do with a daughter?" I thought.

And then, I had an epiphany. I would have a girl, but not a girly-girl. I was so serious about this that I specifically noted on the baby shower invitations that "colors other than pink are preferred."

That was so silly of me, right?

But either no one saw my pink protest, or they chose to ignore it. She was showered with pink tutus, pink hair bows, frilly pink socks and pink onesies with sparkles and ruffles.

Not long before she was born, I packed several outfit options for her in my hospital bag. I decided I needed to meet her first before choosing which one would be "the one." After all, it was her "Here I am, world!" outfit.

Her entrance caused a bit of panic, because no one was ready for her. She was born on the fourth of July, and there was one nurse who didn't seem to believe how far along I was in the labor process — until our daughter was actually on her way out. I still hadn't seen an anesthesiologist, and my OBGYN hadn't arrived yet. I'm pretty sure everyone was enjoying fireworks with their families.

Luckily, my doctor arrived just in the knick of time. When I held her for the first time, I could not believe how beautiful she was. Every time I looked at her, more disbelief set in. We spent a few days bonding in the hospital and it was apparent that she already had a personality. She demanded attention, but she did it in the sweetest ways possible — through silly sounds or funny movements. When she smiled, the world smiled with her. And I've always felt like that was her purpose for smiling.

It was our last day in the hospital before taking her to her home for the first time. I laid out the outfits I'd packed: a yellow dress, a blue and white floral print dress and a white and pink onesie with a few layers of ruffles on it. To my own surprise, I chose the white and pink ruffled onesie. And to top things off, I put a tiny pink bow in her barely-there blonde locks.

She was absolute perfection.

By time she reached Pre-K, she was getting picky about her outfits. They had to be dresses, and most of the time, they needed to be pink. She'd request a matching bow or headband to go with each one as she would look into the mirror and say, "Isn't this a beautiful outfit, mommy?"

Of course, they were.

She lives in a bright pink room with pink and white curtains. She wears tiaras like they are an extension of her head. She tells fifty percent of the people she meets that pink is her favorite color.

All of this, despite my attempt at a pink protest.

Now, as a kindergartener, bows remain a necessary accessory. Especially pink bows. But somewhere along the way, perhaps even that first day I took her home, I realized that I would embrace who she was — even if she was a girly-girl.

She was a tough girly-girl — something I thought of as an oxymoron before she came into my life. I worried less about her entering school than I did with her older brother. No one was going to walk all over her. She would never let that happen. I love that about her.

I love her love for bows and all-things-pink, too. If those are the things that make her happy, then they make me happy, too.

Her life won't always be that simple. But I admire that, for now, it's as simple as tiaras, hair accessories and the color pink. And I will always cherish these years and will remember the careful thought that she put into the selection and placement of her bows.

Few things. Very few things are more precious than the bow in her hair.

I protested pink with a note. She protested my protest by being herself.

The Unknown

09.21.14

About two months ago, I had some sort of a heart episode —— sharp pain in my chest and left shoulder that knocked me to the ground and had me sweating. It came and went within 20 seconds or so, but it felt like minutes, at least.

I chalked it up to some type of anxiety attack [though I've never had one before] and I took a nap. I made a doctor's appointment and had an EKG done. The results of my EKG were normal, though the doctor didn't have anything to compare it to since I've never had an EKG before.

The pain I felt in my chest that day was very real, and very scary. And with my rapid decline in health about 3 years ago, I worried that clotting could still be an issue for me. After all, clotting stopped the blood from circulating to my bones, causing them to deteriorate in my hips and shoulder [but since the removal of the Mirena IUD, there had been no further signs of clotting].

To be safe, she referred me to a hematologist [blood doctor]. I explained the same story to him. I explained what I knew of my family medical history. I recalled that a woman I met through my blog mentioned her Factor V Leiden blood disorder, which she believed led to her Avasular Necrosis. I asked to be tested for that, and just about every other potential blood disorder ever known to man.

Weeks later, I learned that the only test that came back abnormal was my MTHFR. My doctor explained that I have mutated MTHFR genes [one from each parent], which I can't help but identify as mutated M*TH**F****Rs [though it actually stands for methylenetetrahydrofolate reductace. Mine is better, right?].

The hematologist went on to explain that studies have not made any consistent connections between mutated MTHRs and blood clotting. He wished they didn't even include it in the testing, he said, because it just confuses people. It had certainly managed to confuse me, but the easiest way I can explain it [from reading about it] is that it controls the processing of specific amino acids that build protein and other important compounds.

Dysfunction of these enzymes are associated with homocystinuria, which typically forms in the first year of life [but can develop later in life] and may result in skeletal abnormalities; anencephaly, which is associated with neural tube defects; and spina bifida, another neural tube defect where bones to protect the nerves of the spinal cord are not fully developed.

It's safe to say that I now have skeletal abnormalities from my deterioration, but that is the result of Avascular Necrosis — not the mutated M*TH**F****Rs. Or are the mutated M*TH**F****Rs the cause of my clotting, which then caused my Avascular Necrosis? I asked the latter, but the hematologist says no. He says it's not my mutated M*TH**F****Rs' fault. However, my mutated M*TH**F****Rs are possible risk factors for heart attack, stroke and certain types of cancer. But those risk factors are not fully understood, because studies have given mixed results — that gene mutation in one individual may be associated with them, while another individual's is not.

"Therefore, it remains unclear what role changes in the MTHFR gene play in determining the risk of these complex conditions." [SOURCE: http://ghr.nlm.nih.gov/gene/MTHFR]

So, I have two mutated M*TH**F****Rs, but I don't really know what they are capable of. That's just like a M*TH**F****R, isn't it?

At this point, I'm pretty sure I've had more than 100 blood tests. And yet, still no definitive causes. I'm still confident that my Mirena IUD triggered my health issues. I'm just not sure if it is the lone culprit. The wanna-be scientist in me wants to formulate the entire thing —— the exact process of how and why it happened.

According to the Human Genome Project, a human being has 20,000 to 25,000 genes located on 46 chromosomes (23 pairs). These genes are known, collectively, as the human genome. I won't pretend to know or to fully understand this complex system of hereditary codes.

All I do know about any of this is that my M*TH**F****Rs are mutated. And my doctor has no idea what that means for me [I do appreciate his honesty].

The most common form of a mutated MTHFR [homocystinuria] affects at least 1 in 200,000 to 335,000 people worldwide.

More than 20,000 new cases of Avascular Necrosis are diagnosed in the US alone each year. The number of individuals affected worldwide is unknown. Often, it goes undiagnosed or misdiagnosed. There are also few known causes of this disease.

That's a lot of unknowns. But that's also life. Each day, we all wake up to unknowns. There's no telling what the next minute, hour or week may hold.

That's why I choose to focus on what I do know —— God wants me [you] to fulfill my [your] potential in life.

And that, I [we] will do.

"Now unto him that is able to do exceeding abundantly above all that we ask or think, according to the power that worketh in us ... " -- Ephesians 3:20

Arms Lifted

07.29.2014

Back in 2011, when the pain started in my left hip, and then moved to my right hip, I was concerned. I could barely walk, and with each step accompanied by distressing pain, I was forced to sit still for a good portion of my days.

When it spread to my right shoulder, leaving me unable to lift or use my right arm, I was terrified. I couldn't wave. I couldn't throw. I couldn't lift my children. My youngest wasn't even a year old at the time. I couldn't hug them with both arms.

I was living with broken hips and a broken shoulder, but they were not going to heal on their own as most broken bones do.

There was a larger problem that my doctors could not [and still cannot] figure out. I was clotting severely, so much so that the blood wasn't reaching my bones, and my bones were dying. I was also dealing with autoimmunity for the first time in life, and was diagnosed with Sjogren's Syndrome. In a matter of months, I went from a nearly perfect health profile to an absolutely scary one.

I was telling my doctors what I believed the cause was [the Mirena IUD, which was inserted about 6 months earlier], but they refused to acknowledge that because there are no studies to back it up [not because studies disprove this, but because they don't exist - help me to change that HERE]. Although I wasn't even considering a lawsuit at the time, perhaps they feared I would involve them in a legal battle. I saw just about every type of doctor you could imagine. I had countless tubes of blood drawn. But still, they concluded my case as idiopathic, meaning no known cause.

I felt like they weren't listening. I felt like they didn't care.

It was a dark time for me, because I never felt more at odds with myself or the professionals I trusted with my care. My well-being.

I tapped into my faith like never before. I gave it all to God. It was beyond my control.

For the first time in a long time, perhaps forever, I let faith alone guide my decisions.

I had the Mirena IUD removed, and the Avascular Necrosis never spread to my left shoulder, which was unique compared to most cases of Avascular Necrosis that quickly progress from one side to the next [like it did in my hips]. I started scheduling corrective surgeries, one right after the other, every 6 weeks for about 6 months. I needed to get back on my feet. I needed to lift my arm again. I had core decompressions surgeries on both hips and my shoulder. When my left hip collapsed, I had it replaced. Both hips have proved to be too damaged to benefit from core decompression surgery, meaning my right hip will also need to be replaced soon.

But in my shoulder, which was the final joint to become affected, I saw steady improvement. During physical therapy sessions, I could raise my right arm a little higher each time. I could lift things that were a little heavier.

Through all of this, I continued to lean on God. I prayed for healing, patience, understanding. I asked for His continuous guidance.

After six months of being in a wheelchair and heavily relying on aides, I took my first independent steps into my church on a Sunday in August of 2012. Instead of sitting in the back of worship in a wheelchair, I was finally walking up the aisle when the band began to play the most fitting of songs, Never Once. It was a powerful moment, and I felt the Lord's presence perhaps more prominently than ever before.

About a year and half later, I started training as a sound technician during the worship services. During my first night of training the band played Never Once. I smiled inconspicuously, knowing that I was in the right place. On the right path. I faithfully listened, and here I was.

Last week, my husband and I were invited to lead worship in a choir-of-sorts from the stage. I wanted to put it all out there, to lift my arms to Him, and show Him praise.

The night before I wasn't sure if my right shoulder would cooperate. I knew it was drastically improved. But I still can't throw. I have limited mobility and strength. Even at rehearsal earlier in the week, I didn't even attempt to lift my right arm, fearing it wouldn't make it in the air.

That Saturday night, I prayed again. I reflected on how far I'd come and how many of my past prayers had been answered. I even expressed in prayer that I'd already received more than enough of His grace — more than I felt I deserved.

The next morning at church, it became apparent that God wasn't done with me yet. Without pain through three consecutive songs, and for two back-to-back services, my arms were lifted. Both of them. During the services, I relied on God. And I gained the confidence to once again rely on my right shoulder.

Perhaps that ability had been there, and I just didn't know it. Lately, I'd been too comfortable. I was starting to settle. I was returning to making decisions that weren't guided by faith. While I wasn't completely out of the darkness I'd once experienced, I was certainly enjoying the light. And I was beginning to take that for granted.

If I could seek His constant guidance through the darkness, I needed to praise Him and continue to seek Him as I stood in the light.

Though I still seek answers to questions about my health, I've learned to focus more on the answers I've already received.

I do not lift my arms to Him simply because I can. I lift them with purpose — the purpose He gives me.


"So I will bless you as long as I live; in your name I will lift up my hands."
-- Psalm 63:4

The Magic Kingdom in One Day (with toddlers)

The Magic Kingdom in one day? *GASP*

With toddlers? *DOUBLE GASP*

I'm here to tell you that it's not only possible, it can be enjoyable, too.

Our family of five [children ages 3, 5 and 13] set out for Florida the week after school let out [for us, this is the second week in June]. We had plenty of other things planned, but while our daughter's [age 5] world still revolved around Disney princesses, we couldn't pass up going to the Magic Kingdom. We decided on just one day at Disney, which for a family of five is about $500.00. Our youngest [3] still takes daily naps [and, sometimes, still poops his pants], so we weren't ready yet for the full Walt Disney World experience.

We started by deciding which day of the week we would go. Disney is always going to be busy. But their website indicated that Monday, Thursday and Saturday were the busiest days of the week in the Magic Kingdom. So, we went on Wednesday. We didn't have another day to compare it to, but I'd say our choice to go in the middle of the week was a good one. Most of the lines we waited in were about 30 minutes. The longest line we waited in was one hour.

Leading up to our trip, I packed everything separately that we would need for our day at the park. Doing this ahead of time, and with careful thought was key to our success. Here is a list of everything we took to the Magic Kingdom in a book bag:

Two small ponchos

Small first aid kit

Stroller hooks [1 large for stroller to hang book bag, 1 small to hang water bottles on the book bag loop]

Two Brita water bottles with filter [we filled up at water fountains]

Ziplock bag w/ pin backs

notebooks and pens [for character signatures]

Sunscreen

Jackery Bar portable charger [charges up three iPhones fully]

Snacks/Sandwiches

Glow sticks/necklaces

Phone charger(s)/charging station

Change of clothes for the kids

diapers/wipes

Lanyards for Disney pins [one for each child]

We definitely wanted our daughter to experience the Bippidi Boppidi Boutique. But we didn't necessarily want to use precious park time to make this happen. So, we made reservations at the Bippidi Boppidi Boutique in Downtown Disney for Tuesday night [the night before we visited the Magic Kingdom]. There are two boutiques you can make reservations at: One in Downtown Disney, and another in Cinderella's Castle in the Magic Kingdom. For the Downtown Disney location, you don't have to have a ticket [and parking is free]. It's mostly shops and restaurants with a couple of small rides.

We had dinner at T-Rex. We were never able to make reservations ahead of time [because they were filled], so we went straight there and put our names on the wait list. We had about 45 minutes until our table would be ready, so the kids rode the carousel, the train ride, and played with Legos at the Lego store until it was time to eat.

After dinner, we headed over to the Bippidi Boppidi Boutique, where our daughter [5] and youngest son [3] had reservations. The 13-year-old was completely uninterested in this, but I think he secretly found delight in his younger siblings' experience. We got the Knight Package [$18.95] for our son, which included a thick foam sword and shield and a cool hairdo. We did the Crown Package [$59.95] for our daughter, which included a princess hairstyle and make-up, a princess sash and tote, and she got her nails did. We took a Cinderella dress with us to save money, but once she saw all of the dresses in the store, she had to have one. And we were slightly expecting that anyhow. The fit of that dress was much better though. And just FYI - Elsa dresses are only available in the Boutique [with a package], but not for sale in the store.

We purchased Disney's Memory Maker package [$149.00]. I was really on the fence about purchasing this, but decided to go for it, because I knew I'd end up buying enough photos of us that would add up to at least $150.00. This was an excellent choice. They documented their entire experience at the Bippidi Boppidi Boutique, and there was a portrait center in Downtown Disney where they had extra photos taken. All of our photos were included for free because of the Memory Maker package. In fact, I felt like we were getting special treatment and extra photos when we mentioned we purchased it [but maybe they actually make everyone feel that special, and I was just hoping we were extra special].

After the boutique, our daughter could not stop looking at herself in the mirror for the rest of the night, until eventually she laid her princess head down and fell asleep, tiara and all. This worked out well, because she was all dolled up and ready for the Magic Kingdom the next morning.

Another thing we wanted to do was the Richard Petty Driving Experience at the Walt Disney World Speedway. The oldest [13] did the junior ride along experience, and my husband did the ride along experience [you have to be at least 14 for this]. This included 3 laps in a NASCAR race car. For this, you do have to have a ticket to the Magic Kingdom. But still knowing our park time was precious, we booked it for the earliest possible time, 9:30 a.m. To get to the racetrack, there was a race way shuttle that picked us up from the Lost and Found building outside of the Magic Kingdom gates. We were picked up by 9 a.m. and they were riding by 9:30 a.m. The shuttle had us back to the entrance by 10:30 a.m. The photos taken here were, unfortunately, not included in the Memory Maker package. There were photos with plaques and videos offered to us for sale after the rides. I would have purchased the plaques, but didn't want to carry them around all day since we already had plenty of cargo. I was told that they are a separate company from WDW, but just located on their property.

Using the MyDisney app, we made reservations at Tony's Town Square Restaurant for 11:00 a.m. This gave us enough time to meet TinkerBell and Mickey Mouse, who are housed in the same building. We also had some extra time to step out into the Town Square to meet Pluto. At Tony's, I ordered a Margherita Pizza, and I kid you not, it was the best pizza I've ever had! The whole family agreed that the food was reasonably priced and delicious (and kid-friendly). I've been craving more of their pizza since we left there.

After lunch, our FastPasses were ready to kick into full gear. We were each given three FastPasses to use. We chose our fast pass experiences [and times] using the MyDisney app. We did not purchase Magic Bands, because our admission cards worked just as well [that is what you use to scan your FastPass if you don't have a Magic Band]. You have a one-hour timeframe in which to use each Fast Pass. If you show up five minutes early, or five minutes late, your FastPass will not register [I saw this happen to others]. We weren't sure if we wanted to split up, so we all used the same times and locations for our FastPasses.

We used one FastPass early in the afternoon to meet Cinderella and Rapunzel at the Princess Hall. With our FastPass, it took about 15 minutes. The regular waiting time was one hour, so I felt like this was an excellent choice. We would have used a FastPass to meet Anna and Elsa, but I was never given that option, so if anyone knows the secret to getting a Fast Pass to see them, do tell! I never did see anyone go to see them using a Fast Pass, so perhaps that's not an option yet. Those girls sure are exclusive, huh?

We used another FastPass to meet Ariel and we basically walked right in to see her. The regular wait was about 30 minutes, so we probably would have been better off using this Fast Pass for the Seven Dwarfs Mine Train, or the Dumbo ride [which was about a 45-minute wait].

We used the last FastPass for Ariel's Journey Under the Sea ride. We waited about 10 minutes with our FastPass, and the regular line was about a 45-minute wait. I felt pretty good about our use of the FastPass for that one.

We stayed in FantasyLand for majority of the day. That's also where we chose all of our FastPasses, so we wouldn't be too far from our time-sensitive destinations. By about 3 p.m., we headed to Tomorrowland. We rode the Tomorrowland Speedway [which would have been another good option for the Fast Pass]. Then, my husband and oldest son rode Space Mountain, while the "littles" and I danced with the Incredibles. Shortly after, the youngest took a quick power nap in the shade while my daughter had some ice cream.

By 6 p.m., we were heading over to Frontierland and Adventureland. By this point, we got very picky about the rides we went on. We only rode Jungle Cruise in Adventureland, and Thunder Mountain Railroad in Frontierland. Either of those also would have been an excellent pick for the FastPass. We waited about one-hour in line for each.

We didn't make any dinner reservations. We needed some freedom to go and do as we pleased after most of our morning and early afternoon was reserved activities. We actually packed up snacks and sandwiches in a lunch bag and scarfed those down as we kept moving. I really don't know if we were allowed to bring in sandwiches, but we were much too hungry to care.

We snuck back over to Fantasyland for a bit. Throughout the day, each time we saw a Disney photographer, we took a photo and added it to our MemoryMaker account using a card that they scanned. I had hoped by this point [about 8 p.m.] that the line for Anna and Elsa had gone down some. But it was a 120-minute wait, so we never did meet them. There was no way the "littles" were going to wait in a 2-hour line to do anything. That was a bit of bummer, but we didn't let it get us down.

We rode a few more quick rides in Fantasyland, and then headed back to the Town Center to watch the Main Street Electrical Parade at 9 p.m. The kids were exhausted at this point [we were, too], but the smiles on their faces gave us enough energy to stick it out. We got a perfect spot on the curb of the main circle in the Town Center. This got the kids up close and personal with the parade characters, and it was close to the park exit. One of Cinderella's mouses came over and bowed to our daughter, who was still dressed up as Cinderella. She clearly felt very special by this gesture.

We took the ferry back to the parking lot, and drove off as the fireworks blasted over top of the trees.

A 13-hour day had never gone by faster, or been more magical. From just one night at Downtown Disney, and one day in Magic Kingdom, we ended up with about 105 cherished, captured moments [many that included ALL of us, and we didn't have to lug a camera around]. Then, there's the countless memories housed in our brains. With exception of one [maybe two] of our FastPass choices, and the fact that we probably won't do the Richard Petty Driving Experience again [been there, done that, but we'd consider it], I'd do it all the same again.

Oh, and in case you were wondering, our 3-year-old didn't even poop his pants while we were there. Yep, it's magical.

Nine Lovely Days

06.30.14

I graduated college on a Friday in June of 2002. That following Monday, I did what everyone else in my family (five generations back to be exact) had done. I got a job at the local shipyard. I was a young mother at the time — my son was almost two years old, which meant there was no time for a graduation trip or time off before entering the "real world."

Twelve years had passed, and I still hadn't managed to take a full week off of work.

So much had changed from then to now. I got divorced. I got a new job. I got remarried. I had two more children. I had four surgeries. Since I was only actually paid for four weeks of maternity leave (but needed six), and I chose not to take disability leave after my surgeries (using vacation instead). I struggled to accrue enough time off for any type of extended vacation.

But this month, that changed.

We finally did it. Our family of five managed a vacation that lasted nine whole days.

Nine lovely days.

About a month prior, I had a cortisone injection in my hip joint. I'd hoped it would last, but it didn't. Still, despite the pain, I went. I was beyond determined to make this trip happen. I needed it. We all needed it.

We were going to Florida. And even if my family had to wheel me in a chair (which they didn't), we were going to Disney World.

We started planning at the start of the new year. We even made an agenda for our trip, which was really more of an outline of options than a 'must-do' list.

I stared at the agenda, updating it constantly right up until the day before we left, and daydreaming about how some it would play out.

Two days of driving. Three days with my best friend and her family. Several days at the resort, swimming and doing other activities. One day at Downtown Disney. One day at LegoLand. And one very full day at the Magic Kingdom at Walt Disney World.

On the road, the kids (ages 3, 5 and 13) cooperated much better than anticipated, with no major meltdowns along the way. Spending time with my best friend and her family was instant Chicken Soup for my Soul.

The Magic Kingdom was as magical as I remembered it as a child, and if you are interested, I go into [a lot] more detail about that day in another post: The Magic Kingdom in One Day (with toddlers).

I can safely say that it was far better than any daydream I conjured up.

I didn't daydream the moment when my daughter, who was dressed as Cinderella, got Cinderella's autograph in her book, and walked away hugging the book to her heart while letting out a happy sigh that brought tears to my eyes. That was real.

I didn't daydream my youngest son constantly climbing up and zipping down the water slide at LegoLand with a boisterous laughter that seemed to be volumes above the dozens of other children playing in the area. That was real.

I didn't daydream my oldest son grabbing for my hand in public as we walked from the arcade to the ice cream parlor. That's something he hasn't done in years, but something I sorely missed. That was real.

I didn't daydream my daughter practicing a song she titled, "I love you," before performing it for my oldest son. Or how she would learn to swim all by herself for the first time. Or how our youngest would do 180s from the side of the pool, only taking breaks to eat watermelon or to hug his [stuffed] baby lion. Or how my husband and I could do more laughing than stressing, and talk about things other than what we needed to accomplish the next day and who needed to take the kids where at what time.

We all only needed to be with each other. Having fun. Spending undistracted time together. Making unforgettable memories. And even relaxing some.

For nine lovely days.

I'm so glad I didn't let my pain hold me back.

Long vacations may not have been a thing of my past, but they are certainly a thing of our future.

One Long Wait, One Real Hip, One Dead Phone

05.16.14

I was doing so well. People were actually commenting on how much my stride had improved.

About two weekends ago, my husband and I decided to be kids again. We went to an amusement park —- all by ourselves! We rode roller coasters, shared ice cream, played games and won some stuffed animals for the kids, and we even dip-dyed candles just for kicks.

I knew going into our little excursion that I would be pushing my body to the limit, but I'd hoped that I would quickly recover.

But I didn't. So, after two weeks of limping that was getting progressively worse, I returned to the doctor to request another cortisone injection into my joint. My last injection had lasted months, and had great results. And I wanted my stride back.

It was a typical visit, except that my phone was dead and I quickly realized how much I would miss the distraction it provides in such a setting. In the main waiting area, I flipped through a few magazines that I was fairly uninterested in, occasionally glancing up at the national news, which played out scenes of flooding in New York. Out of the windows, I took notice of some tall, slender trees with only limbs at the very top, and for some reason, I wished I knew how to identify said trees.

"If I had my phone charged, I could probably look up what type of trees those are," I thought.

"Or perhaps I wouldn't have noticed the trees at all," my thought continued.

Eventually, my name was called for my next wait in the room.

Once in the room, there were no magazines. No television. No other people. No windows. Just me, and my latest hip X-ray on a computer screen.

Of course I know my hip has been replaced, but each time I'm faced with it on screen, my thoughts lie somewhere in between impressed and utterly confused. I have one real hip, and one titanium hip. An actual piece of myself missing and replaced with a large piece of metal, a screw, and a round wire that, at one point, was holding together a crack created during my replacement surgery. There it is on the screen and there it lives in my body.

I was reminded of a recent X-ray I had for kidney stones where two nurses thought they pulled up the wrong X-ray.

"You're too young for a hip replacement," one nurse said.

"Avascular Necrosis," I replied.

She confirmed her understanding with an "Ah, Okay," as only nurses and medical professionals do, because no one else knows what the heck Avascular Necrosis is.

It was late in the afternoon as I continued to wait in the room, and the building was quiet enough for me to hear the doctor making his rounds. I could tell he was still a few rooms down the hall. This was going to be a long wait and I had no idea what time it was. Maybe it was better that way.

My eyes returned to the X-ray, and I briefly tried to make sense of how any of this even came to be, but decided to cut off that train of thought. With little options left, I decided to stare at the floor for a bit. I began visualizing the grains of the wood floor into images, the way people often do with clouds. In them, I found shapes reminiscent of teddy bears and "Mother Mary."

I checked my phone to see if it had miraculously received some power, but it hadn't. I rested my right elbow on the chair, plopped my head in the palm of my hand, and let my heavy eyelids lower to their rightful place.

A few moments later, the doctor walked in. We talked for a bit. He asked me to consider getting my right hip replaced. He said that the shots, while helpful, are only temporarily masking the problem. He said that when/if this next shot wears off, I should go ahead and schedule my next replacement.

I looked back to the computer screen at my one real hip. I could see that my hip joint was splotchy-looking and that the ball of my hip was not round, but somewhat ridgy, like a mountain top. Earlier, I was so focused on the replaced hip that I didn't take as much notice of the real one.

Just months prior, I thought my hip was on the mend. I was optimistic about having years, at least, left to go on it. But here I was again, trying to imagine any time this year when a having another replacement surgery would be convenient. Of course, no time came to mind.

I nodded along to his statements, realizing the truth in them, but every emotion inside of me just wanted to break out into a full on kicking-and-screaming tantrum right on the same spot of the floor where I had just envisioned teddy bears and "Mother Mary."

But on the outside, I just kept nodding.

After my shot, which involved a needle that appeared to be as long as my titanium hip, I was in route to my final wait area for a new X-ray. I caught a glimpse of a clock in the hallway and realized it was about 5:35 p.m. My appointment was scheduled for 3:30 p.m. I walked in and sat down with some relief to a television that was airing an episode of "House Hunters." Just as I grew annoyed at the woman on screen who grumbled over a kitchen backsplash that didn't suit her tastes, they called me back for the X-ray.

After no more waiting was left to be had, I exited the X-ray area to find no one at reception, no doctors, no nurses, no other patients. Just me, the X-ray technician who now held an image of my one real hip in her hands, and a custodian who was cleaning up after a full day of patients.

They let me drive home this time, which was different than the last time I received a joint injection. I wasn't sure why, but I didn't question it, and besides, no one was there to question anyways. Within an hour of getting home, my injected hip was in so much pain that it felt like I had a 200-pound leg hanging from my hip, ready to cut loose from the rest of my body. My temperature rose to 100 degrees, so I laid down to rest and hoped to wake up to something better.

By morning my temperature was gone, and my pain was barely there. I got out of bed to discover that I wasn't limping any more. The injection was doing it's job. This could last days, weeks, possibly months.

I'm going to give my thoughts some time to settle. With an upcoming trip to Disney World next month, I'm pretty certain the pain will return.

I'm also certain I'm not willing to let my circumstances stop me from having adventures and experiences with my young family. Again, I'm reminded that sitting and letting life pass me by is not, and may never be, my cup of tea.

For as long as the Lord gives me another day -- I've still got places to go, sights to see, memories to make.

Avascular Necrosis is an unruly condition that has taken the very framework that held me up and attempted to knock it down. But I am so very thankful that options exist to give me the quality of life that I desire.

And so, I will keep on keeping on ... until I can't any longer.

I almost forgot what my days of waiting without a smart phone were like. It'd been a few years since I've gone through that process without shoving my face into a tiny, little screen that emerged from my purse. And I kind of liked being more present and observant in the shifting rotations of waits after all.

"Through him we have also obtained access by faith into this grace in which we stand, and we rejoice in hope of the glory of God. More than that, we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us."
— Romans 5:2-5

The Last Day in April

05.01.14

It's been three months since my last post, and so much has changed since then. Yet, so much else has remained the same.

Some days are almost painless, and others are painful. This is the life I've learned to live and I am A-OK with that.

I started a new job in February. On my first day, I spent most of my time cleaning up my office and organizing my things. I opened up boxes that I had filled up from my previous office, just a few hundred yards up the road. I didn't go far, but it was still a big decision for me to leave a job that I knew I loved, for a job that I could potentially love more. I pulled books and other memorabilia out of the boxes, making sure to give each item it's own special place.

A bookshelf lined the wall next to my new door. I placed three framed photos of my family on top of it, carefully shifting over a small 2-ring desktop calendar — the kind with one day on each page that you flip as the days pass. I did a double-take, surely with a look of confusion that luckily no one would have seen since a wall blocked me from my new co-workers' sight.

The calendar was flipped to April 30, 2014. It was February 18, 2014.

It struck me the way that my birth date normally does. But my faith, as it so often does, led me to ponder what else was involved.

Certainly, a person flipped it to that date. But why that date? Was I supposed to let it go or read into it further? Was it a sign from above or was I over-thinking this?

Well, as of yesterday, April 30, 2014, has come and gone. It was my 35th birthday.

It was a very busy work day, followed by a night of fun. My husband, along with a few family accomplices, managed to surprise me at my daughter's dance class with a new outfit he bought me — right down to the high heels and earrings. They sent me out the door, completely childless, with a card that said to go home and get ready for dinner. I felt all Pretty Woman-like, minus the fact that I've never been [or will be] a hooker.

As some of you may know, and probably most do not, my birth date on it's own has major significance for me. My birth mother was only 16 when I was conceived. She visited an abortion clinic, but left when she watched a video that explained the procedure. She chose to give me life, and in turn, gave my parents a daughter. And my three children a chance at life. One day, they may have children, too, so her selfless decision can be seen and carried on, potentially, for many generations to come.

I've lived a good life. An amazing one, actually. The kind any loving mom would want her child to have.

The kind my birth mother wanted me to have. And the kind that my mom and dad provided me [and still provide me] with. I simply cannot thank one, without thanking the other. She gave me life, and they were there every step of the way — helping to mold me, teach me and to catch me as I fall.

Behind all of the fun surprises and the 35th anniversary of my birth, I had some mixed emotions.

You see, the very woman who gave me life met with her doctor yesterday and was given a cancer diagnosis and a median life expectancy of one year. As far as I can tell, she will face her battle with strength and optimism.

I already know she is strong. I don't know the amount of strength it must take to give your baby a chance at a better life — one that doesn't involve you — but I know it would be an immeasurable amount. For her to have that type of strength at the young age of 16, I can only imagine the type of strength she's developed in her 35 years since then.

The thing is, life expectancies are merely an average of others' experiences. Not hers.

And there is nothing average about her strength.

And for me, there is nothing average about the last day of April.

"We live by faith, not by sight."

-- 2 Corinthians 5:7

Avascular Necrosis and Disability Benefits

01.21.14

The following is a guest post from Molly at Social Security Disability Help:

Avascular necrosis, or bone death, is a serious medical condition that worsens with time. Progressive pain and loss of mobility can make it impossible for an individual with Avascular Necrosis to maintain employment and earn a living. The resulting loss of income and lack of medical insurance can be financially devastating.

If you have Avascular Necrosis and can no longer work, you may be eligible to receive Social Security Disability benefits. Disability benefits can be used to help offset lost income, medical costs, and daily living expenses.

This article will provide you with a general understanding of Social Security Disability benefits and will prepare you to begin the application process.

SSD Programs and Basic Eligibility

Social Security Disability benefits are governed and distributed by the Social Security Administration (SSA). The SSA offers two different types of disability benefits. These are Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI). Each program has separate eligibility requirements.

SSDI is designed to offer financial assistance to disabled workers and their eligible dependent family members. To qualify for SSDI, applicants must have paid a certain amount of Social Security taxes throughout their careers. For an in depth look into SSDI technical eligibility requirements, visit the following page: http://www.disability-benefits-help.org/glossary/social-security-disability-insurance-ssdi.

SSI, on the other hand, is designed to offer financial assistance to disabled individuals who earn very little income and have very few financial resources. Eligibility for SSI is based solely on the financial limitations set by the SSA. Learn more, here: http://www.socialsecurity.gov/ssi/text-eligibility-ussi.htm.

Individuals who qualify for SSDI but still fall within the SSI financial limits may be able to receive both SSDI and SSI benefits.

Medical Eligibility

If you meet SSDI or SSI technical eligibility criteria, you will then have to prove your medical eligibility. The SSA will perform an in depth review of your medical records to determine if your avascular necrosis is severe enough to cause complete disability. Your records will be compared with listings in the Blue Book, which is a manual of recognized disabilities and the medical requirements for each.

Because there is no Blue Book listing for avascular necrosis, the SSA will attempt to match your symptoms with those of another Blue Book listing. The following listing requirements may closely match many of the symptoms caused by avascular necrosis:

Section 1.02 – Major dysfunction or deformity of one or more joints

Section 1.06 – Bone fractures

Section 7.05 – Sickle cell anemia

Section 14.02 – Lupus

Section 14.09 – Rheumatoid arthritis

If you require joint surgery as a result of avascular necrosis, you may also qualify for disability benefits under Blue Book listing 1.03. This listing requires that you are unable to effectively walk for a period of at least 12 months following surgery.

To access all Blue Book listings, visit the following page: http://www.ssa.gov/disability/professionals/bluebook/AdultListings.htm

In is important to note that the SSA will consider the effects of all of an applicant’s conditions. For this reason, it is important to include information on any and all health conditions that impair your ability to work—even if they don’t occur as a result of your avascular necrosis.

Medical Vocational Allowance

If you do not meet or match a listing in the Blue Book, you may still be eligible to receive SSD benefits under a medical vocational allowance. Essentially, this means that the SSA will evaluate your physical capabilities, your job training, your age, and several other factors to see how your condition affects your ability to hold a job.

To qualify under a medical vocational allowance, you will be required to complete a Residual Functional Capacity (RFC) form with a medical professional. You and your doctor must complete separate RFC report forms. Be proactive and have these done even before the SSA requires them. This may prevent any delays in your claim and possibly allow you to be approved faster.

Social Security Disability Application Process

Before beginning the application process, it is important that you collect all required medical and non-medical documents to support your disability claim. This may include the following:

Education and training documentation and employment records

Financial information regarding income, savings, and financial resources

Diagnostic test results, including imaging scans and bone biopsies

Notes from medical appointments that show physical findings, diagnosis, and observations about the limitations you experience and the outlook of your condition

Records of the treatments you’ve undergone and the manner in which they have affected you

RFC report forms from you and your treating physician

Once you have collected the necessary records you can begin the application process online or in person at your local Social Security field office. The application consists of several different forms. It is important that you take your time when filling these out. Any mistakes or incomplete information may result in the delay or denial of your claim.

Receiving a Decision

After submitting your disability claim, you may not receive a decision for several months. While you are waiting, it is important that you continue to follow any prescribed medical treatment and continue to collect updated medical records. This will help you in the event that your claim is denied.

If your initial claim is in fact denied, you will have 60 days in which to appeal the SSA’s decision. It is important that you do not give up and that you continue on in your pursuit of disability benefits. It is understandable to be discouraged after receiving a denial but the appeals process is often a necessary step toward receiving disability benefits. In fact, many more applications are approved during the appeals processes than during the initial application.

For more information visit Social Security Disability Help (http://www.disability-benefits-help.org/blog)or contact Molly Clarke at mac@ssd-help.org.

A Fragile Body, A Tough Mind

12.13.13.

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.

Tough.

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

12.01.13.

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

10.19.13

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:
http://petitions.moveon.org/sign/mirena-iudskyla-iud-clotting

Mirena IUD Lawsuits: Why You May Not Have a Case

08.06.13

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."


[SIGN THE PETITION AT]:
http://petitions.moveon.org/sign/mirena-iudskyla-iud-clotting

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:
http://petitions.moveon.org/sign/mirena-iudskyla-iud-clotting

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.