Thursday, March 22, 2012

Question and Answer Time....

Hi everyone....

As you know, I have an email address that is connected to this blog (lifeaftermirena@yahoo.com) for women who want to write to me privately.  I am amazed at the amount of emails that I have received from literally ALL OVER the world.  Reading through them again recently, I have noticed that I have gotten several questions multiple times, and I thought that maybe I should just answer them here since I seem to be typing these particular answers over and over.  :-)  So here you go.....just in case you are interested....

QUESTION #1:  "I see you on Curezone.com as 'ProudMomma', what is your real name?"

Answer:  Well....considering all we have been through "together", I believe that we should be on a first name basis...ha ha.  My name is Kristi.  Nice to "meet" you all!  :-)  One day, I may just write up an entry about myself.  I might as well....it's not like I'm hiding or ashamed of all of this.  It's part of my journey...parts of it are ugly, but I'm going to be honest about it.  Stay tuned.  I'm nothing spectacular...just a woman, wife, and mommy like most of you who got really sick and is still fighting to get all better.  I just have a really big mouth when necessary and the ability put my words into print (English teacher).  I'm just trying to use both of those to reach as many of you as possible.  :-)

QUESTION #2:  "Can you please send me Dr. J.'s contact information so that I can get more information on the detox/have it shipped to me?"

Answer:  Biggest question that I get!  Yep....sure can!  You can reach him at 620-792-6854 or at DrJNutrition@gmail.com

QUESTION #3:  "I've heard that silicone and silicon are two different things.  So, does the test that you had run that showed that you had elevated levels of silicon in your blood (see earlier post) really show evidence of siliconE poisoning?  I'm confused."

Answer:  Yes.  And I see how you are confused.  I heard the same thing, and it confused me.  I wanted to know for sure because I wanted to take down my blog post claiming to have detoxed my own blood of silicone poisoning if that wasn't true....however, I found that--after talking with my doctor about it--that yes, the test I had done IS an indirect way to show silicone poisoning.  Let me try to explain...

Do you remember the article that I posted in an earlier post about silicone poisoning?  It was dealing mainly with women with breast implants, but there was a great section in it that explains silicone and what it does to the body....since we know that we were dealing with it as well, I wanted to post it.  Here it is again if you missed it.

  CLICK HERE

If you did not read the above article/study before, PLEASE read it now....it is an important one.

So here we go--In the article, it explains that silicone breaks down into silicon via your white blood cells.  The article states,  "Silicone degrades into silica...then fragments and subdivides into millions of micro droplets capable of migrating throughout the body.  Silica in the body is a toxic, carcinogenic substance, damaging the immune system, killing cells, and producing silicosis."  I went even further to ask if silica was the same as silicon...since my test showed elevated silicON levels, and I found out that, yes, it is the same thing....Silica is SiO2...silicon is just Si.  So silicon is just silica broken down even further.  So, according to my doc, the silicon test is an indirect test for silicone since most doctors are not aware of the one test for silicone antibodies (see below for that).  Remember, my first test showed elevated silicon, and my second test--the exact same one--showed NONE after I detoxed.  The same test tubes were used (for those who wonder if it could have detected silicone from the test tube itself....no....they have to use a special acid-washed tube for this test).  Plus, silicone tubes etc., don't magically break down their silicone into solution.  The silicon on my test did not come from the test tube--it couldn't.  #1, like I said, they use a special acid-washed tube for that test (that is why I couldn't do it at my docs....I had to go to a special lab), and #2, even  a regular tube has nothing in there to break it down into silicon....your/my body did that trying to get rid of the silicone.

As of now, there are currently two medical tests for silicone in the body:

1.  Silicone Antibodies
     --  UNILAB Test #8099 Cpt 86318
   Regular 4 ml Serum at room temperature
   = Analytic time 7-10 days

2.  Silicon Levels
    --  UNILAB Test # 9025 CPT84285
   Minimum 2ml to 4 ml Serum Analytic time 7-10 days

These tests are available through your personal physician.  You may have to call your local medical laboratory and ask for the code numbers and take them with you to your physician.  The tests are relatively new.  They were developed by a rheumatologist at the University of California at Los Angeles.

Remember, silicone produces a CLASSIFIABLE new disease marked by autoimmune symptoms.  Nobody can say you are making it up anymore.  It is now as classified and "official" as Multiple Sclerosis or Lupus.  It is just an autoimmune disease that we were forced into instead of naturally developing it.  As the article states, a variety of names for silicone-induced autoimmune disease have been proposed:  silicosis, undifferentiated or atypical connective tissue disease, silicone related disease, silicone reactive disorder, silicone disease syndrome, etc.  See my earlier post on the symptoms of Silicone Immune Toxicity Syndrome.  I know beyond a shadow of a doubt that it is what I'm dealing with.  It is a Kristi description to a T.  Those matching symptoms--almost every single one, on top of having the blood test that showed elevated silicon levels in my blood, made that clear to me many moons ago....

I really hope that makes sense.  I'm an English teacher....not a doctor, so medical explanations are not my forte.  I did the best I could, but please let me know in the comments section below if you need any further clarification, and I will adjust as needed.

QUESTION #4:  "I'm having a lot of suicidal thoughts, and I can't stop them.  I just need this torture to stop.  Were you suicidal when you were at your worst?"

Answer:  I know that this is such a sensitive subject, and that is why most of you "talk" to me about it privately.  I will never put anyone's personal story on this blog unless I specifically ask them and they give me permission.  However, this is asked of me a lot, so I wanted to give you all an answer.

No, I never contemplated suicide.  BUT LET ME BE CLEAR ON ONE THING....it is NOT because I was stronger than any one of you out there who are/were.  Even though I never let my mind go there, trust me when I say that I was very much still at that point of knowing that I couldn't live like that much longer.  For me, I knew that I was on borrowed time to fight with everything I had because I knew that I simply could not even fathom living the rest of my life in that nightmare.  I personally reacted in a way of looking at my husband, my 2 year old daughter and my brand new baby boy and getting PISSED at what was happening.  Yes, I was terrified, and I crumbled multiple times, but I made a promise to myself that if I was going down, I was going down fighting because I wasn't going to let my two babies lose their mother to a two-inch piece of plastic.  I hit a rock bottom before I found Dr. J. when I couldn't seem to get a doctor to believe or help me.  I just had anxiety pills thrown my way along with a "That sure doesn't sound like the Mirena."  After awhile, I was desperate.  I would sit in my doctor's office, bawling, and BEG him to help me.  I felt myself dying a little more every day.  When I was at that rock bottom--when I was at the place where I knew that I couldn't continue living like that much longer--that was when I started demanding tests like the silicone, etc., and found out about the elevated levels.  When that happened, although I was still so sick, it gave me something to hold on to...something that was an ANSWER that I could use to fight with.  Soon after that was when I found Dr. J., and he joined in on my fight.  I cannot say that I wasn't broken down to the state of needing it all to end.....I did desperately want/need it to end....I just decided that, if it was possible to beat this thing, that is how I was going to end it--or I was going to die trying.  I took that fear and turned it into fuel to find a way out.  To me, there was no other choice.

Please know that, when I say that, I am not at ALL saying that those with suicidal thoughts are weaker than I am.  NO WAY.  I COMPLETELY understand how women are getting to that point.  I hate to even think about where my mind would have gone if I wouldn't have gotten those test results, found a doctor who would help me fight, etc....  It makes me sick to think about how desperate I probably would have become if I would have ever gotten to the point where I sincerely believed that "this is it....this is how my life is going to be for the rest of my life."  To me, that wasn't an option.  I knew that I couldn't live like that....period.  I think that so many of the women who are getting to the suicidal attempts are at that point and still don't find help or any answers to hold on to.  For me, what was so maddening at my rock bottom was not only the physical pain that my body was in, but even more the mental torture that I couldn't make go away.  Like I said in an earlier post, I felt like my brain was going a million miles a second, 24 hours a day, and I couldn't slow it down...not even at night...and that is why I couldn't sleep for days on end.  I remember sitting on my couch sometimes just holding my head in my hands trying to get my mind to STOP going so fast.    I don't know of many people who can handle that for too long.  I remember how much I felt like I needed for it to just STOP.  I definitely understand how women are getting to that desperate measure of making it stop themselves, and my heart breaks for them.  I was so lucky to have my periodic blessings of getting the silicone results, finding my doctor, etc. sprinkled throughout my fight, and each one of them gave me a shot in the arm to start fighting hard again.  It made me unable to give up and gave me more strength to find even more answers.

That being said, those desperate days are behind me, and they will be for you, too.  PLEASE do not lose hope or do anything to harm yourself.  Just keep fighting...contact me if you need to.  I've literally talked another Mirena victim down from suicide over the phone...do whatever you need to do to keep going.  It will get better for you, I promise.  Just hold on.

QUESTION #4:  Can you explain what you mean by "adrenal attacks"?  What were those like for you?

Answer:  Sure.  When they would hit me, it felt just like that...like I suddenly had so much adrenaline in my body that I couldn't contain it.  Sometimes, I would be physically unable to stay seated, and I would have to get up and pace around my house for over an hour until my body would let me be still again.  Sometimes, it would surge so much that I would just start shaking and sweating until I would vomit.

QUESTION #5:  How did your friends react when you were at your worst?

Answer:  To be honest, they didn't really have the opportunity to react to me.  Ask any of them, and they would say that I just disappeared....which is true.  I literally dropped off the face of the earth for about a year because it was too difficult for me to go out and do things.  I just felt like I couldn't handle it or I felt to sick.  If I did go somewhere, I had to get my acting skills out because it was all about how well I could fake being okay.  It is a very sad time to think about.  As you read in earlier posts, I even tried to keep it from my own husband until I literally couldn't hide it anymore.  For so long, I didn't know what was wrong, and I was simply too embarrassed to admit that I was breaking down physically, mentally and emotionally "for no reason".  My advice now?  Don't do that.  Be open about what is happening to you to those you love...especially those you know will be a good support system for you.  When it became so clear how legitimately sick I was, and I turned to my loved ones for help, they were there.  I would have loved to have that sooner, but I was humiliated and scared.  I should have let them in on it right away.

QUESTION #6:  What are you the most angry about?  Out of everything?

Answer:  I'm the most angry about how it took me away from my family.  It still makes me tear up when I realize that I literally do not remember much of my son's first two years of life--and he had some special needs that really made that little boy need his momma even more. I remember so much more of my daughter's infancy, and she is almost three years older than he is.  I honestly hardly remember much at all (and I've tried!), and most of what I do remember was suffering and various stages of faking being okay.  My kids lost their mom for a long time.  I would lose my temper and snap at my daughter for stupid things, and there were far too many times that I had to leave the room to rock back and forth and cry in another while my kids sat downstairs in front of the television because I just couldn't "be okay".  I tried.  Oh Lord how I tried.....  It was just stronger than I was for a very long time.  During that time, and I don't know what it is in the Mirena that does it to you, but it was literally impossible to feel joy.  I couldn't do it.  I could not be happy....  If you knew me personally, you would know how polar opposite that is of my natural personality.  I spent so much time either in the middle of an anxiety attack or worried about when the next one was going to hit, and my body hurt SO much, almost all the time.  It wasn't living....it was just surviving to the end of each time--at least that is what it felt like.  No matter what happens with the Mirena in future, they will never be able to give that precious time of my son's first two years of life back to me.  I know that I shouldn't feel guilty about it...that it isn't my fault....but I do--every day.  I'm having a difficult time feeling like I'm ever going to be able to forgive them for that.


QUESTION #7:  I just don't understand.  Why me?  Some women are fine.  Why did it have to be MY life that was destroyed?

Answer:  I don't know the medical details.  By what Dr. J. explains, it is due to how far into the "autoimmune cascades" our body goes (see his video on "Mirena and Autoimmunity" in a previous post).  Some women just get more damaged than others.  As far as how I emotionally handle that question, I am personally a Christian.  I don't believe in a God who wants me to suffer.  I thought a lot about the verse from Jeremiah 29:11--"For I know the plans I have for you, declares the LORD, plans to prosper you and not to harm you, plans to give you hope and a future."  I'm not trying to turn this into a church service, but it is something that I personally focused on.  I've asked the "Why me" question more times than I can count, but I truly believe that I know the answer to that:  YOU.  If this blog helps women who would have otherwise never found an answer...or never found hope...or never found someone who understood, then I understand why I had to go through it first.  I would obviously not be writing this blog had I not gone through that nightmare myself.  The day I talked a victim down out of hanging herself was the day that I "got it"....there was a reason for my suffering and a purpose for my pain.   When I was in the middle of my fight and couldn't find anyone to help me--or at least just tell me what to expect, I made a promise to be that person for others if I could be.  A year and a half later, I'm still here, I'm still writing through my journey, and I have no intention of leaving you.  Do I still get angry?  Do I still jump, full-force, onto the "pity party bandwagon" on the days that I still struggle?  You betcha.  However, I don't ask why anymore.  If you do, ask yourself how you can use this for a positive purpose.  At the end of your darkest suffering--and I promise, ladies, it will come for you--will your family be stronger?  Will you help other women make a decision against the Mirena that can ultimately save the destruction of her health?  Will you embrace life in a new way?  I don't know the answer to that, but I do know that we all need to do the best we can to turn a horribly negative and unfair situation into a positive outcome as best you can.  It is all any one of us can do.  Being angry for the rest of our lives over what happened isn't going to take away that it did, in fact, happen.  What we can do is choose to make it steal as little of our joy in this life as possible.  I still have hard days, but I choose to do whatever I can to say, "No way....this day is MINE."

Don't forget how strong you are.

Don't lose hope because feeling better IS coming.  I know it's hard.

***  Spoiler Alert  ***
You win.
:-)

Much love to you, ladies.  You've got this.

Sincerely,
Kristi

6 comments:

  1. I <3 U. Seriously.

    Erika

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  2. Back atcha, Erika! :-) How are you feeling?

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  3. You are more than welcome. Keep fighting. Big hugs. :-)

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  4. Kristi...you are an angel...thank you so much for this blog an for all the information and support you have provided.

    One question - I got rid of Mirena last August, but I am still HUGE. Do you know how long it takes to lose the weight? I have my annual OB/GYN visit coming up and I am ashamed to go because she and her nurse were adamant that Mirena had nothing to do with my massive weight gain, but removed it because I asked them to. Now I am going back almost a year later - not having lost any weight - and I feel silly. I wish I lived in KS because I would go to Dr. J!!!

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  5. Anonymous--I wish I could help you out more here, but I was one of the ones who had the opposite reaction: I lost too much weight and became gauntly thin. However, I've spoken with so many women who had the same issue that you have had, and it sounds like has been very difficult for these women to lose the weight that they gained while on the Mirena. I know that a couple of them have had success with a juice fast to kick start the weight loss (They watched the documentary "Fat, Sick and Nearly Dead", and decided to do it. I think it is working out for them. Have you been trying to exercise as well? Let me try to ask around to some of the women who are struggling with their weight and get back with more information. Also, any ladies who read this....please post a comment to try to help her. Thank you!

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