Thursday, February 23, 2012

Sound familiar???

The Signs and Symptoms of Silicone Immune Toxicity Syndrome:
    Peripheral Neuropathy (weakness, tingling, numbness in extremities, etc.)
    Central Neurotoxic Neuropathy (cognitive difficulties, memory problems, fogged thinking)
    Cervical and axillary enlarged or painful lymph nodes
    Fibromyalgia (multiple tender areas)
    Myositis (painful inflamed muscles)
    Night sweats
    Hair loss
    Abdominal pain
    Pulmonary hypersensitivity (shortness of breath, etc.)
    Emotional instability
    Joint and tendon pain
    Possible Chemical Sensitivities and/or Food and inhalant sensitivities
    Other autoimmune disorders, including rheumatoid arthritis and Sjogren’s syndrome, scleroderma, multiple sclerosis, etc.
In silicone immune toxicity syndrome, the body produces antibodies against the complex that forms when silicon attaches to protein molecules in various organs, resulting in an autoimmune response.

There you go.  I know this is one of the wonderful things that has happened to me because I tested positive for elevated silicon a full five months AFTER the Mirena was removed (I can't even imagine what the levels were when it was still in my body or soon after removal).  I also have almost all of these symptoms at various times...and that is 17 months after removal.

I have heard from a woman in Quebec who had her silicon level checked, and they called her in to redo it because they thought that something must have gone wrong with the test (because the number was so high).  The number should be between 0-10 to be in the normal range.  Hers--and yes she took the blood test again only to confirm it-- was 110.4!

Sad, sad, sad.  It's worth checking out, ladies.


So, I respect doctors.  I really do.  I have some who have helped me tremendously in my life.  I have also, especially during this Mirena experience, dealt with a couple who pretty much said that it was all in my head and then tried to just push a bunch of prescriptions for anxiety my way.  It was so frustrating because I was literally sitting in one of my doctor's offices BAWLING my head off because I was scared to death.  I actually said to him, "I can tell that I'm dying....I can feel it happening....and I need you to stop it.  Please help me."  At that point, I could feel system after system slowly shutting down, and--at the time--I didn't even know exactly what was physically happening--I just knew that the Mirena was the cause because everything happened at the same time.  He waved his hand at me, told me that "it sure didn't sound like the Mirena", and moved on with the conversation.

I also remember telling him, "I have been your patient for almost seven years, and I've been here, what, maybe two times?  Once for an ear infection and once because I sliced open the back of my foot and you had to glue it closed.  Now, suddenly, I'm here every week in tears with some new symptom that is keeping me from functioning correctly.  Obviously, I am not some hypochondriac who wants to be here for attention.  I NEVER go to the doctor.  I ALWAYS try to let my body heal on its own.  I need you to believe me.  This thing has done something.  Trust that I know my body."  Again....a silent nod and nothing.  Ugh.  This was the same doctor that told me that there was no way that I had silicone poisoning in my blood, and that--if I did--it is impossible to get out.  Whoopies, were wrong on both counts.

Women, trust your bodies.....  Even if your doctor doesn't believe you.   Keep searching until you find one who does.  That's what I did (Thanks, Dr. J.).

*I* was the one who figured out it was the Mirena by many a night of online searches and contacting others to match symptoms....and I was right.

*I* was the one who matched symptoms up to believe that I had silicone poisoning...and forced my doctor to run the test...and I was right.

Almost everything that was diagnosed for me was done because *I* figured it out, and then I went to the doctors to run the tests to prove it....and I was proven right each time.

I am not saying this to brag or pat myself on the back.  I'm telling you this to remind you that, just because you don't have a degree in medicine, you do know your bodies, ladies.  You know your minds, your emotions, your strength...all of it.  Nobody knows that like you do.  Doctors (not all of them) can be ignorant, too.  If you find one who is--and who is unwilling to listen--FIND ANOTHER ONE.

I felt the need to write this post because I just heard from another fellow Mirena sufferer who just left her doctor because he was ignorant....and he was pompous.  He told her that it was all in her head, and actually said, "You can go to the website for Tide detergent and probably find these symptoms."


I don't know who you are, doc....but I kind of want to smack you around a little bit.  What happened to you?  When did you become unwilling to listen to someone who is clearly sick and suffering and open your mind to possible reasons why that could be....ESPECIALLY when she is holding hundreds of stories from other women who all have the EXACT same symptoms and ALL have the Mirena?  Since when is that not worth your time to consider that as a possibility when this woman started shutting down within days to weeks of having that thing put in her body?  Let me tell you something, "doctor", one day, all of this information is going to come to light--just like the Norplant did--and you are going to realize that you were insensitive and, more importantly, WRONG.  When that happens, I hope that you rethink how you treat patients who enter your office with something that might just be (GASP) unfamiliar to you.  Just because you haven't encountered it doesn't mean it isn't true.

The first day I met Dr. J., he said, "One thing I have learned is that I trust what women say about their bodies.  I don't know what it is about you, but almost every woman that I treat is correct about what is going on with them.  You have that intuition that blows my mind.  I have learned to really listen to that and move from there."  When he said that, the tears came.  I finally found someone who was going to fight for me.  Someone who believed me.  That made all the difference in the world.

Ladies, you are not crazy.  You are sick.  Your bodies have been damaged.  But you can fight to get your life back.  I hope you find a doctor to be in your corner as you do.  But, no matter what, do NOT let anyone tell you that what you KNOW isn't what is happening.  You know better.

Tide detergent.....seriously, doc?  Maybe if I ATE a gallon of it....and I would still feel better than I did when I was at my worst.  Tide

Doctors are smart.  Doctors can help.  But some doctors can be ignorant, too.  At the end of the day, they are not YOU.  Don't forget that, and don't let some giant degree on an office wall make you feel like you don't know anything about you.

Keep fighting for your health, ladies.  You'll get there.

Friday, February 17, 2012

Come ON, already!

Sorry....but today is a super frustrating day, and I just have to vent about it since pretty much everything else hurts to do.

17 months post removal.  And yes, I am SOOOOOOO much better, but man--ovulating is still so hard on me!  And this is coming from a woman who used to never even know when it was happening.  Luckily, I am at the point where I know that it will pass in one to two days once my body finally ovulates, but still....sheesh....those two days, today being one of them, is beyond frustrating.

I'm not sure why, but my body still has to work so hard to ovulate each month that it is like every other system in my body has to shut down a bit in order to make it happen.  My body hurts something fierce, my thinking is all jumbled, and I'm exhausted to the point of wishing I could just sit and stare at the wall for the whole day.  Everything seems just so much harder to do!  And yesterday?  Yesterday was just fine....Blech.

You should have seen me trying to make a pot of coffee today--pitiful.  This is something that I do every single day and could do with my eyes closed.  Today, it took me FOREVER to fill the carafe up to the correct numbered line and to count out the scoops of coffee...  If either of the kids said something to me, I would forget what I was doing and have to start over.  What is so maddening is that I KNOW I should be able to do it...which just ticks me off even more.

My daughter needed a bath this morning, and you should have seen me....I was DREADING the fact that I had to do it.  I knew that just walking up the stairs to get to her bathroom was going to hurt my legs and my hips, and then I was going to have to get her cleaned, dried, dressed, hair fixed--all while hurting and in a complete brain haze.... Man, for something that I normally do without even thinking about it, doing it during this window is like asking me to compete in a marathon with my feet in cement shoes.

Yes, I know that I am going to feel just great again in a day or so.  I get it.  I appreciate it--I really do.  I once didn't know if that was ever going to happen, and that was what was so scary.  So no, I'm not scared....but I'm angry today.  This isn't fair.  For these two days each month, this isn't okay that my body and my mind just can't seem to work like I know they are supposed to.

I'll keep fighting through it because I have to train myself to be able to function successfully through it (just in case this becomes a long term thing...I will eventually be back at work, and I won't have the option to "opt out" as much as I want to, I have to learn how to function through this.  I hope that this will someday be a thing of the past just like everything else has become.  I need it to be.

Sorry for the negative post today.  I'll feel better again in no time.  I just want you all to know that I DO still know--far too well--what this stupid thing has done to us.

I just keep focusing on how lucky I am to finally be at the point here I only have a couple of affected days per month now instead of every minute of every day.  I'm lucky....but I'm not done yet.  I am still working on how to ovulate successfully now without my body needing to shut down everything else.  I'll figure it out....I'm far too stubborn not to.  Focus on what I know today, gets better as time passes.  One day, God willing, this will all just be a bad dream.

All my love.  Keep fighting.  I'm right there with you.

Thursday, February 16, 2012

My update on Pseudo-Tumor Cerebri

I thought that I would give an update on my journey toward investigating if I have Pseudo Tumor Cerebri.

Quick back story....I was one of the lucky ones who, after having the Mirena inserted, I lost most of my vision in my right eye (within the first couple of months). I went from great vision to legally blind in that eye (20/80 vision) virtually overnight. Anyway, after seeing the connection between Mirena and Pseudo Tumor Cerebri (click to learn more), I thought that I'd better make sure that wasn't something that I was dealing with (since it can back you end up permanently blind if not treated).

After researching it, it seemed like I needed to see a specialist called a Neuro-Opthamologist to accurately diagnose it. I also read that it was diagnosed via MRI and spinal tap results (Quick description: Pseudo Tumor Cerebri is when there is too much cerebral spinal fluid in your head, and it can crush the optic nerve from behind, causing blindness). I wasn't looking forward to a lumbar puncture, but I was willing to do it to find out.

After contacting a Neuro-Opthamologist, I learned that I had to have my Opthamologist send my information to him to be "accepted". I set up an appointment with her so that I could explain what I was trying to do.

At my Opthamology appointment, I was told that she firmly believed that I would be wasting my time getting checked for this...for two reasons: Number one, I was showing no signs of Optic Neuritis (a swelling or damage of the optic nerve--again, click for further detail), and I was showing no signs of Papilledema.  She said that, if a person has PTC, they almost always show signs in one of those two areas.

That is as far as I got. In her opinion, I don't show any signs of having it, and she says that, with the extent of vision loss that I experienced, I more than likely would if that is what caused it.

So.....I guess I am at the point where I just have to accept the blindness in that eye and move on with my life.  It is time to make the adjustments necessary to live with it. I'm sick of the glasses--mainly because every time I take them off, I literally become nauseous due to the extreme difference between both eyes (they start fighting one another), and it makes me dizzy and sick to my stomach. I don't have the money for Lasik surgery (nor do I know if I even qualify for it.  I haven't checked because I don't see the point in doing to the consultation to see if I qualify when I know that I can't even pay for it right now. So, next week, I am going to be fitted for contact lenses so that I have something in my eyes all day to keep my eyes "equal". Hopefully, that will help....and I'm hoping that--one day--I will be able to do the Lasik surgery on that right eye so that I can see again from it. Fingers crossed....tightly.

As frustrating as this is, I am at 17 months post removal, and--overall--I am doing so much better that I am beyond grateful. I think about where I was a year ago, and it still makes me cringe. I remember praying that it wasn't going to be my last Christmas with my family and wondering how I was going to have that conversation with my husband....what we were going to do to plan for the worst-case scenario of mom no longer being in the picture (because I would either be physically gone or so "mentally gone" that I couldn't function). Remembering that, I will accept the blindness in that eye as something frustrating and unfair, but something as as "hiccup" in my otherwise healthier and happier life than this time last year. What else can you do, right? Dust yourself off and move forward....we know that all too well, don't we?

I hope that explains my latest process clearly enough. I am still praying for all of you, and keep fighting.....I can tell you that I still feel myself getting better and better as each month passes. It's been hard (I've never taken so many supplements in my life! Ha ha), and it has been frustrating, but it is moving in the right direction.  What I'm doing is working....and I choose to focus on that.

My love to you all.