The Final Countdown

04.30.2012


My 13-month-old started walking this week, so he beat me to it. He is sporting the drunken-toddler-walk to go alongside my zombie-apoocalypse-walk. We are a funny looking pair and I love that I am not alone in this task.

It was my 33rd birthday and it was time to begin the long-awaited gait training. In the grand scheme of things, it was a really short wait. It's only been three months since my first surgery. But these months have seemed an eternity at times. About 7 months ago, the pain started as "probably inflammation" but ended up as "your bones are deteriorating in your hips and shoulders and you need surgery right away."

But today was here. I made it.

My dad wheeled me into the PT office and I wheeled myself back to the PT area. There were a few other people doing their PT, mostly women (and one man) who were probably in their 60s or older. The room is about the size of half-court and the four walls are lined with equipment and beds.

My physical therapist asked me to walk, using my crutches as needed. Up and back I went. I must have done about 8 straight laps. I could feel a lot pain in my hips, but I stayed focused on his feedback.

This walking stuff was more difficult than I had remembered. I actually had to think about how to walk for the first time. I needed to keep my right leg straight when stepping forward with my left leg. Apparently, my right knee likes to bend long before it should. And I was taking longer strides with my right leg than with my left.

You'd think after 33 years of walking, that this would be pretty easy to pick back up, but it was becoming more clear that was not going to be the case. Because I try to compensate for the pain in my hips, my legs sort of buckle in as I walk. I tried so hard to keep my knees facing forward as I continued walking. According to my therapist, my natural hip swing was gone in my right side. I had to consciously swing my hip out when stepping on my right leg.

"Ok. So, keep my right leg straight when stepping with my left. Keep my knees facing forward. Rock my right hip out when stepping with my right leg. Take even steps," I mentally reminded myself.

I kept my ears tuned in to the physical therapist and my eyes stayed focused on my feet. As funny as it must have looked, it was so rewarding to see one foot step in front of the other. I looked up for a minute and realized that the eyes of other patients were focused on me. They didn't have much of a choice. I was the only one up and walking and everyone else was using equipment or lying on a bed facing in my direction.

The PT room has a funky gym effect that I've never liked much. I hate working out in front of people. I always feel so awkward. But at least at PT, we can all smile at one another. We are all there for the same, but different reasons: to fix whatever was "broken."

Most other patients are at points in their PT that I still dream of reaching. I enviously watch them as they walk on the treadmill or speedily ride the exercise bike.

They often ask what happened to me. Most assume a car accident. I almost always get a look of confusion when I reply that I developed Avascular Necrosis in my hips and shoulders and had to have core decompression surgery to repair my bones.

They tend to reply with something along these lines: "You have what? Avascular who? How did that happen? What caused it?"

They ALWAYS seem to ask "what caused it?" For the most part I answer, "I don't know yet." But really, I do know. There just is not an easy answer to that question. It's hard enough explaining what Avascular Necrosis is and then on top of that, explaining what core decompression surgery is.

I've gotten pretty good at explaining it in a nutshell, but it's still confusing -- even for me. I guess that's another reason I've enjoyed having this blog. It's easier for me to explain it all this way. I've always been better at writing than speaking. I guess that's why I chose writing as a profession.

With exception of one break at PT when I had to sit and drink some water, I did pretty well. The bulk of my improvement will come from stretches. My hips are severely stiff. They don't like to flex out and when they do, it feels like they are on the verge of breaking. My shoulder is becoming more flexible and I can almost lift my arm straight into the air. That's pretty amazing considering 4 months ago, I couldn't lift it at all.

During my gait training, I mentioned that it felt like one leg was longer than the other. When I try to stand with my heels flat to the ground and my legs unbent, I have to slightly tiptoe on one leg. My physical therapist measured my legs and sure enough, my left leg is one inch shorter than the right. He said that since I can bear weight on my right leg now, it might "even out." Since I've been putting weight on my left leg for a while, it's possible that as the bone was repairing, it collapsed an inch. So now I have to wait and see if my right hip "collapses." Cool.

When I returned home from PT, I took my laptop outside and worked on our back patio for the rest of the afternoon. It was a beautiful day -- about 70 degrees with clear skies. With the sun resting on me, I turned up my "Adele station" on Pandora and soaked in the warmth and the sounds. The soulful voices of Adele, Corrine Bailey Rae, Sarah Barielles and Colbie Callait were accompanied by a refreshing breeze.

The birds were chirping and, at one point, I actually decided that I had the powers of Snow White and I held out a finger, waiting for a bird to land on it. It didn't work. Then I started to laugh at myself and decided I was lucky that a bird didn't decide poop on my head.

The songs carried me through different times in my life. I thought about the people in my life and those who left it too soon. I love how music takes me to different places without ever having to physically move.

I always feel so close to God when I am outdoors. When I look around and listen, I have a hard time understanding how everyone doesn't believe in Him. But for the record, I still love you regardless of what you believe.

My work was done and the sunlight was fading in and out as it peeked through gaps in a large maple tree. I went inside and within 30 minutes, I heard the car doors slamming from in front of the house as the "Mommy, mommy" coming from my 2-year-old's mouth got closer to the doorway.

My family was home. My children hugged me AND I was able to hug them back. I blew out my candles (with help from my daughter, of course) We had cake and ice cream and I opened some gifts. It was perfect.

I still have a long way to go, but I'm closer to where I want to be -- living independently again and God willing, being able to run a 5K in September.

But I already know that I'm exactly where I need to be.

Things That Make Me Go "Hmmm..."

04.25.12

I had a follow-up appointment with my Rheumatologist to discuss the results of some more blood tests I took. To be clear about how extensive these tests were, they took 17 tubes from me. And this was the second round of testing. In the first, they took about a dozen.

Out of all those tests, the only thing that came back positive was an ANA (Antinuclear Antibody). This just means that I have an autoimmune disorder of SOME type. But the other tests would confirm that it is probably nothing too serious. Thank God for that!

In doing some research, I've learned that 1 in 12 people actually have an autoimmune disorder. In the US alone, 23.5 million people have an autoimmune disorder. There are more than 80 different known types of autoimmune diseases. They are all characterized by abnormal functioning of the immune system, which causes your immune system to produce antibodies against your own tissues.

My tests revealed a "higher than normal" level for Sjögren's (SHOH-grins) syndrome, a disease in which the immune system targets the glands that make moisture, such as tears and saliva. However, I don't have the symptoms for it:

Dry eyes or eyes that itch
Dryness of the mouth, which can cause sores
Trouble swallowing
Loss of sense of taste
Severe dental cavities (I'm always proud to report that I have NEVER had a cavity!)
Hoarse voice
Fatigue (Sure, I'm tired - I'm a mother of three)
Joint swelling or pain
Swollen glands
Cloudy eyes

The doctor said that it could mean that I will develop Sjögren's later in life and he suggested a pill that could slow the progression. And then there's the possibility that I won't and that the test means ... well, nothing.

And again, my mind takes me back to the link made between Mirena (IUD/birth control) and Autoimmune diseases. A doctor posted a video, which explained how the two (Mirena & Autoimmunity) were connected. I discovered that video on a blog called, "My Life After Mirena" and I also previously posted it here.

It was also on, "My Life After Mirena" where I learned about the connection between Mirena and Silicone poisoning (yes, silicone - the kind that fake boobs are made with). Mirena uses silicone -- no doubt about that. And it is advised to Mirena users, that it should not be taken "if you are allergic to silicone."

But how would a woman who has never had leaky breast implants possibly know if they are allergic to silicone? And since the silica in silicone is considered toxic, wouldn't we all be "allergic" to it? Of course, the study that found that out that silica has high levels of toxicity (in 1954) has been "suppressed."

Here is an article (I got this from "My Life After Mirena" blog) that explains how silicone produces abnormalities in immune system functioning: http://www.lightparty.com/Health/SiliconePoison.html

As I read through that article, it leaves very little doubt in my mind. (Please keep in mind that the silicone used in breast implants and the silicone used in Mirena are the same.) Here are some points that stood out for me:

"HIGH LEVELS OF ANTI-NUCLEAR ANTIBODIES (ANAs), IMMUNE MARKERS ASSOCIATED WITH LUPUS erythematosus, were observed in ten of 11 women with implants reporting autoimmune symptoms."

(Hmmmm... a positive ANA ... Lupus-like symptoms...)

"Researchers at the University of Wisconsin at Madison School of Medicine reported that AUTOANTIBODIES OF UNCLEAR SIGNIFICANCE may be found in 5% to 30% of women with silicone breast implants."

(Double Hmmmm... unclear significance ... like being told you have "some SORT of autoimmune issue," but not sure exactly what it is!...)

"Typical symptoms associated with silicone include cognitive dysfunction, short-term memory loss, SJOGREN'S SYNDROME (dryness in glands, such as the mouth, kidneys, eyes, and lungs), scleroderma, rheumatoid arthritis, dermatomyositis, severe joint and muscle pain, incapacitating fatigue, swollen lymph glands, skin problems, peripheral numbness, multiple allergies, headaches, hair loss, sunlight sensitivity, central nervous system disorders (similar to multiple sclerosis), and others."

(Triple self-explanatory Hmmmm ...)

And this is just plain interesting:
"Silicone produces a classifiable new disease marked by autoimmune symptoms. Among physicians willing to credit silicone with toxicological and immunological effects, a variety of names for silicone-induced disease have been proposed: siliconosis, undifferentiated or atypical connective tissue disease, silicone related disease, silicone reactive disorder, silicone disease syndrome, and silicone implant disease (SID)."

I would also like to report that, upon entering the room I was waiting in, the doctor came in and the first thing he said to me was, "You stopped using your birth control, right?" He didn't go into detail and I could tell by how quickly he moved on in the conversation that he didn't want to discuss it any further.

He explained my blood tests results, which weren't much of anything. But given the CLEAR connections above, I have little to no doubt that my "unknown immune issues" were caused by the silicone in Mirena. And those "issues" triggered my Avacular Necrosis in my hips and shoulders.

Avascular Necrosis, also known as osteonecrosis, mainly affects men. However, in cases related to SLE (systemic lupus erythematosus), the disease mostly affects women. As I have shared before, many women who use Mirena have reported lupus-like symptoms. It seems to cause the body to mimic Lupus, without actually having it.

If you are a woman who is reading this blog -- my advice would be to stop or never use Mirena. You might not have any clear symptoms or problems and you may actually be happy with the carelessness associated with an IUD (I was), but why would you take that chance with your body knowing what you know now?

You will have to do your own research and decide what is best for you.

I do not think that a ton of women who use Mirena will develop AVN and have to learn to walk again. But for me, that is what is meant. Do not give your birth control even a chance to control you.

I would also like to make it clear that I am not researching these connections because I want to go after Mirena and sue them. I am researching because it is my body and I deserve to know why my life has been so affected. And I think that this information is worth sharing.

My doctor has suggested that I visit a Mayo Clinic for further research. They have specialized treatment and diagnosis. I do want to go, but the closest clinic is in Florida. I'll definitely wait until I'm comfortably walking again to be able to travel there, which will hopefully be soon.


Note to women with breast implants: Even if you have saline implants, they are in a silicone casing. The article I linked to above states, "Thousands of women who have had their implants for one or two decades now are seeking medical help for mysterious symptoms which resemble arthritis, fibromyalgia, scleroderma, connective tissue disorders, and/or immune dysfunction and seem to be associated with their implants."

Please read, sign and share this petition for more testing on Mirena IUD/Skyla IUD:
http://petitions.moveon.org/sign/mirena-iudskyla-iud-clotting/

Ten More Days

04.19.12

I'm two weeks into physical therapy. Since I'm not able to put any weight on my right leg yet, I've been doing a lot of stretches, lifts and work with my right shoulder. It's been going well. It certainly pushes me and causes some pain, but it's definitely worth it. I'm just keeping my eyes on the prize, which in my case is just getting back to "normal" as much as possible.

Last week, I realized that my first day of gait training (aka: learning to walk again) will be on my 33rd birthday. I honestly couldn't think of a better gift.

And then I got to thinking deeper into the situation (as I typically tend to do) - specifically, about the timing of it all. Early on in my diagnosis, I wondered, "Why now? ... While I'm in a busy time in my work and personal life? While my children are so young? While my husband and I can still race down the slopes and play sports with our children?"

But then I started to ask myself ... "Whose time?" I mean, in my mind, we are all on borrowed time to begin with.

And I realized that, at 33 years into my life, I would be re-learning to walk again while my 13-month-old is learning to walk for the first time. If I have to learn to walk again, I'm glad he's right there with me. And I get to take that first, long-awaited step on my birthday. And for the first time, material gifts seem silly. And I have the summer and the sunshine to look forward to with a new lease on life.

Certainly, no time seems to be a "good" time for something like this to happen. But maybe the timing wasn't so bad after all.

Ten more days.

"I waited patiently for the Lord; and He inclined to me, and heard my cry. He also brought me up out of a horrible pit, out of miry clay, and set my feet upon a rock, and established my steps." (Psalm 40:1-2)

What Were the Odds?

04.10.12

Two blogs in two days. I'm really on a roll. I've talked a lot about my feelings and my experience, but today I learned some new things. I was also reminded of some important things. I wanted to document them before the hustle of tomorrow made them fade.

Early on in my AVN diagnosis, after I realized that none of the known causes made sense for me, I began to think about Mirena (my birth control) as a possible cause. When I told my doctor about the thought, he suggested I have it removed and I did. By that point, AVN had spread from my left hip to my right hip and then to my right shoulder. But after it's removal, the spreading seemed to just stop.

AVN was detected in my left shoulder, but it wasn't bad enough to operate on. And since removing Mirena, it hasn't worsened.

The pain in each hip came hard and fast. And in my shoulder it seemed to go from a slight ache to a broken shoulder within a couple of weeks. So, why didn't it spread that quickly in my left shoulder? I think it is because I took my Mirena out in the nick of time. I was able to save one limb. That one fully functioning limb, my left shoulder, has kept me sane on most days.

I realize that, with any birth control or medication, you are taking a chance that it will affect you. The frustrating part has been that other doctors (I've seen many) seem to disregard it when I mention this as a possible cause. And of course, there's always the feeling that the company could have done more to provide certain warnings.

I can't expect a doctor, with hundreds of patients, to focus solely on me. But I do expect a doctor to consider my knowledge of my own body and to at least give that knowledge a chance. I posted before that I met with a rheumatologist who I like. But even when I mentioned this to him I received a "it's unlikely" response with no further discussion.

He did say, however, that it could have been a mixture of my birth control with "some type of autoimmune issue" going on with my body. Blood tests have revealed nothing, except that there is an "autoimmune issue." Well, this could mean just about anything from nothing to something. But after more than 20 tubes of blood taken ... nothing.

Then today, I find a blog titled, "My Life After Mirena." It's about a woman's recovery after Mirena, but it's also a place where women have gone to converse and talk about the effects that it has had on them.

In one of her posts, http://mylifeaftermirena.blogspot.com/2011/12/very-important-video-to-watch.html, I found this video:



Upon further research, I've discovered that many women's bodies, while using Mirena, mimic symptoms of Lupus, which is a cause of Avascular Necrosis. The doctor's seem to have ruled out Lupus as a possibility for me since I have none of the known symptoms and three healthy children, which is unlikely with Lupus.

BUT if I didn't get Lupus naturally, and my body was just mimicking it while I was using Mirena, isn't it possible that it would have the same effect on my body? Seems highly possible to me. And after contacting the doctor speaking in the video, he seems to agree. I'm going to share this information with my own doctors and hope that they will take it seriously.

I'm also going to ask to be tested for silicone since many women with it in their bodies have stated that as the core of many of their own problems after using Mirena. It's a start.

On a positive note, I decided to go back and read my own blog from start to now. It really is amazing how far I've come. I used to lift my right arm onto my keyboard to type by way of my left arm, because it couldn't lift on its own. I couldn't hold up a drink in my hand. Looking back, I'm not sure how I made it onto my feet some days.

I started physical therapy today. It seems like my biggest issue will be getting back the range of motion I once had. It's almost certain I'll never be as flexible as I once was, but my strength is starting to show and the physical therapist is optimistic about an almost-full recovery. Of course, I didn't tell him that "almost-full" is probably not good enough for me. Though, any improvement is a blessing.

I intend to receive my doctorate the hard way for as long as it takes me to find peace of mind.

Today was a good day.

At work, I was interviewing a man for an article. After his faith called him to donate his kidney to a former co-worker, he did. What he didn't know, was that there was a 1 in 100,000 chance of him, as an unrelated donor, becoming a match. But he was a perfect match, meaning he met six highly unlikely criteria to become his donor.

After searching the world wide web for about 30 minutes, I found that 1 in 100,000 statistic on a UC Davis website and sent it to him. It was a question, that up until today, he had never asked himself: "What were the odds?" Turns out his oldest son received his Master's from UC Davis, a college in California, which provided the answer to that very question.

Again, what were the odds?

Coincidence? I think not. I think God sometimes speaks subtly, and other times he speaks clearly. God spoke clearly to him to give up his own kidney for a friend. I'm sure after today, he can be even more sure of that even though he never seemed to have any doubt.

Today, God also spoke clearly to me. He told me that He was there. And that is all I need.

I've never been much of a believer in coincidence or luck. And I love days that remind me why.

Ups and Downs

4.09.12

Again, I've slacked off posting. The past few weeks have been filled with ups and downs. No different from life before I was diagnosed with AVN, but my lows felt lower at times. Heartache, irritations, sleepiness, anger, exhaustion, schedules, missed opportunities - those have come and gone my whole life. But dealing with such a decline in who I am, how I perform, what I can and can't do for my family ... that's a tough pill to swallow.

In all honesty, I've felt normal emotions, but at certain points, they've intensified. Watching my parents become exhausted as a result of my physical incapabilities has been hard. They come to the house each morning and get my three children up and ready and take them to school. More often than not, I'm still lying in bed, because I don't have the strength to get up. The thought of going straight into a wheelchair hasn't been motivating. I feel awful for all they've had to do.

My husband has recently talked with his boss to go in later to work and give them some relief. This has helped. But again, my husband is having to go to work late and he's only been working there for about 2 months. It seems that I can't help but inconvenience anyone anymore. I know they don't see it that way. I'm sure of it. But it's tough to be a witness to the things that I, as a mom and a wife, want to do.

Some days, its almost as if I've had an outer body experience. Like the old me is looking over the new me, wondering what happened, trying to push me along. And most days, it's my faith that gets me through. I believe in a healing God and I have actually come a very long way from where I started.

From a limp, to the inability to walk, to not being able to use one of my arms -- I wondered if I would ever be the same. It's obvious now that even if I physically return to where I was, mentally, my mind works on a different level.

I want to cry when I think about how I would complain about the energy and disaster control it took toting my kids in and out of school each day, to their practices, games, activities -- as if their dependance was an inconvenience to me. I've discovered that is a blessing that I will never again take for granted. I can't believe it took all of this to make that obvious.

I was settled. I was living and doing. But was I really living? That sounds dramatic. But maybe it should.

It's not as if I have a deathly illness, at least not that the doctors can see. But I've had my abilities stripped and now, after three surgeries and almost three months in a wheelchair, they are slowly returning.

In the past few days, I've been using my crutches at times. It's as close to normal I can get on some days. If it's a short distance, I'll limp along, holding onto whatever is close by. I can pick my children up off of the floor and place them in my lap. Something I couldn't dream of doing six weeks ago. It's the best feeling in the world.

Tomorrow, I return for another physical therapy evaluation. And at the end of the month, I'll be able to start gait training, which pretty much means I'll be learning to walk again. For the first time since this began, it feels within my grasp.

If there is one thing I know about myself, it's that I'm stubborn. I try to use that in a positive way and set goals, some that might not even be achievable, but I'll certainly try. I've decided to run my first 5K in September. I haven't cleared it with my doctor, but it doesn't matter. I'm going to do it. See? Stubborn. It can be a good, and a bad thing.

I cannot lie. I've been disappointed in people and I hate admitting that. I always try to see the good in people. I just can't help but think that if one of my friends or family members were in my position, that I would do more. Or do something at least. This is not to take away from the dozens who have. We've been brought food, flowers, had offers to babysit. But some of the people I would have expected the most out of have been ... well, invisible.

I can't blame them though. I don't actually tell people how difficult this is at times. When people ask how I am doing, I almost always reply with a "good." And many have said "Let me know how I can help," but I never know how to take that. I mean, what if I really responded with, "Can you come to my house and get my children ready and take them to school?" "Can you offer to have my son over for a night?" "Can you feed my family" "Help me clean?" I'm just not going to ask people those things. Again ... stubborn.

What I can take away from that is when I know someone in need, I'll offer something specific and follow through. I'll pray for them. I'll check on them. I'll make sure they know I care. I've seen this in people who have reached out to me. Some who I haven't even known that well or for that long. Maybe they learned that lesson the hard way as well.

Even the disappointment has been replaced with an optimism that I've been able to pull out over the past week or so. And the disappointment came at my lowest of lows, so that is where it should stay.

As I said in a former post, life goes on and so, I have to go on, too. And others peoples lives won't stop, just because mine has been affected. I'm surrounded by love and all in all, my faith in God and in people has grown because of it. I can look around me and easily find so many things to be thankful for. And I've lived another day to be thankful for them.

What more could I possibly ask for?