Wednesday, February 16, 2011

A plea to the husbands/mates/parents/etc....

Not sure what really made me sit and write this post, but I really feel like it is something that needs to be said... 

This post is for the husbands/mates, the parents, etc. of the women out there who are dealing with all of this.  I've heard so many heartbreaking stories from women whose marriages/relationships ended during this "post Mirena" time in their lives.  This woman was "different", and it simply became more to handle than some wanted.  What is so sad is that these women could get better one day, wake up, and realize that her family is gone--It's too late for her to show her loved one that the nightmare is over....and now, when she can finally have her life back (and they can have the "old her" back)...she's alone.  Husbands/Mates, Family members...I just want to "talk" to you for a bit.  This is vitally important for you to read.  Let's chat, okay?

(Ladies, if you feel like a loved one is struggling with all of this, PLEASE sit him down in front of this screen.  Maybe it will help to have him "listen" to someone's else's first-hand account of what is going on with you.  I hope it helps.)

When I was in the middle of my Mirena battle, I was truly at one of the weakest points of my entire life, and it lasted a year and a half.  I was so sick....and I was TERRIFIED of what was happening to me.   I spent months hiding how bad it was because I was embarrassed to admit that I was unable to "get a grip" on myself.  And, as I said in a previous post, to verbalize it made it true...and I didn't want to admit that it was.  I wanted desperately to just "get over it" and move on.  I quickly realized, however, that it simply wasn't that easy.  I was horribly ill.  I was at a point in my life when I needed my loved ones more than ever before.  After my ordeal was over, I sat down with my husband to truly get the insight of the one who walked through this experience with me.  I wanted him to be completely honest...and he was.  But more importantly, he was THERE to have the conversation with me because he CHOSE to stay and fight alongside his wife.  It didn't mean that he didn't have his doubts in the beginning.  It didn't mean that he never got frustrated.  He was as confused as I was for a long time....but he chose to trust me.

With all of that being said, let me begin by validating YOUR toughts out there as the loved ones in this situation:
  • I know how confusing this is for you.  You are looking at this woman, and she doesn't seem anywhere close to the woman that you once knew.
  • It seems like there is a new problem every week.  You are catching yourself actually doubting whether or not she is telling the truth....or if it is really as bad as she is saying that it is.  You wonder, "Is she overexaggerating, being overly dramatic?" 
  • She seems lazy.....unorganized.....unmotivated.....
  • You may wonder if this is worth it.  "I didn't sign up for this.".....  "Will she ever come back to me?"
Let me do the best that I can to address all of this as a woman who went through it and is now on the other side.  Again, I'm not going to sugar coat anything here because my purpose here is to be realistic.  It may also come across a bit like "rambling" because I have come to realize that, no matter how hard I try, I will truly never be able to accurately verbalize to the correct extent what it is like to be in that nightmare, so I can only do the best that I can.  Imagine, if you will, that I am that woman in your life....my pleas are hers.  She may not be to the point where she can accurately explain things because she is still just trying to make it through the day without falling apart.  It took me awhile after I was better to be able to really compartmentalize everything and put words to what I went through, what I was thinking, and what I needed from that loved one in my life.   I ask that you PLEASE be open and receptive to what I am saying.  Put any frustration and anger towards your situation aside and just "listen".  This is probably one of the most important blog entries that I will ever write.

Here we go:

Your wife/loved one doesn't seem anywhere close to the woman that you married/once knew.  You feel like she's gone.  She doesn't smile like she used to.  She doesn't embrace life like she used to.  She doesn't react to you like she used to.  You're right--she doesn't.  But, let me make something perfectly clear:  SHE IS IN THERE.  She isn't lost...she hasn't "changed"....  She is TRAPPED in there--in a body and in a mind that SHE CAN'T MAKE WORK. 

If that didn't soak in...please read the above paragraph again...and again....and again....

That is what is so scary about all of this.  I remember thinking that it would almost be easier if I would have lost my mind enough that I didn't know what was happening--become dilusional.  That's not what happens, though--at least not with me...and not with all of other women that I've talked to about this.  SHE KNOWS THAT SOMETHING IS HORRIBLY WRONG.  Believe me, I knew that I was in big trouble LONG before I had the test results in my hand that showed I had been poisoned.  She knows that she looks all kinds of messed up.  She KNOWS that she didn't get anything done that day, or that she reacted badly to you, or she seems incapable of functioning properly.  Trust me...SHE KNOWS...and she is in there praying that she was different.  She knows that she isn't okay, but she can't help what is happening.  She may yell or cry at something that would normally not even affect her.  And you know what?  She is in there thinking, "What in the world was that?  What is wrong with me?"  I can't even begin to explain how many times I verbally snapped at my daughter for something silly or felt intense anger toward my husband when he didn't even do anything other than walk in the room...and so in order to make sure that I never said or did anything that I would regret, I would just go to another room until that feeling went away.  I can't tell you the number of hours I spent in my son's nursery, crying and rocking back and forth in the glider until some awful feeling or symptom passed and I could rejoin the world.  I couldn't simply stop feeling that way at that moment...no matter how hard I tried.  I knew that it was "wrong", I knew that it wasn't me, but I was completely unable make it go away.  That, my friends, is TERRIFYING when you don't know if it is ever going to stop.  I describe it best when I say that is honestly like feeling like being buried alive.  The "real" you is in there, screaming to get out of this shell that doesn't work right, can't think clearly....you are still fully "awake" down in there...watching yourself crumble, overreact, fall apart, on the outside.  You are doing everything in your power to break though and change what she is doing, but you can't.  I know that sounds impossible.  It's not.  It's TORTURE. 

Imagine living in a mind and body that you aren't in control of anymore...but yet you are still deep down in there watching it happen and begging to GET OUT.  That is where she is right now.  She's fine one moment...and then she's not.  But, it has nothing to do with the fact that she is "gone" or "changed".  She's there, trapped...and fighting to regain herself again.  That is her LIFE right now....a constant battle of ups and downs, juggling symptoms and her own fear.  I felt like my daily success was determined on how well I was able to "fake" being okay.  Some days, I did great.  Some days, I would crumble multiple times.  But, I can tell you that I was just as much "IN THERE" on the crumbling days as on the other ones.  Those were just the days that the sickness and symptoms were too strong for me--no matter how hard I fought against them--and I was fighting constantly with everything in me. 

Think about how proud you are.  We are proud, too.  It's embarrassing and VERY difficult to admit that you aren't strong enough to beat something.  We are wives, mothers, career women...we are used to multi-tasking everything, and suddenly it is too much to unload the dishwasher or make a grocery list.    This woman in your life is scared to death....because she doesn't know why it is happening or when it is going to happen again.  I felt like I was living in limbo between being in the middle of some sort of anxiety or adenaline attack or being so scared as I waited and wondered when the next one was going to hit.  I'm telling you....that's not living.  I was juggling anxiety attacks, my brain being so foggy that I couldn't form a thought, my mind was darting all over the place 24/7, my heartbeat would become irregular, I would lose the ability to feel or use my hands, my vision deteriorated, I would go multiple days with no sleep, I felt like I couldn't breathe, and EVERYTHING was too overwhelming to handle...and that is just some of the symptoms I had.   My point is, during all of this, I was completely "me" the whole time....I WANTED to do all of these things...be all these things.  I was just trapped way down in there and physically and/or mentally COULDN'T do it.  At those bad times, no amount of wanting to be okay made me strong enough to be so.

As far as the "Is it really that bad" question.  This the the easiest question that I've ever answered.  YES.  It's worse.  I remember wishing at times that I had the ability to just grab my husband's hand and, for those brief moments, make him be able to feel EXACTLY what I was.  It had nothing to do with me wanting him to suffer...it was a need to know that he understood how horrible it felt at that moment.  I knew that I couldn't explain it anywhere close to how it really was, and I knew that if I could JUST somehow transfer it over to him through my hand, he would NEVER have to doubt or wonder again.  That may sound strange, but I thought that a lot:  "If I could just get him to REALLY know what it is like in here....just for a moment suffer this hell....he would never give up until I was okay again."

The reason that I'm writing this has nothing to do with trying to emphasize the "doom and gloom" aspect of all of this.  What I'm trying to do is make it clear that, right now, this woman NEEDS YOU more than ever before.  She needs your strength and your comfort because, at this moment, she has none of her own.  This is truly a time that she is depending on the "In sickness and in health" vow, husbands.  Don't give up on her.  Don't leave her.  Fight for her because she is fighting, too....with everything she's got. 

BE THERE.           BELIEVE IN HER.            TRUST HER.          SHE NEEDS YOU.

I remember many nights when I would be lying there at 3:00 in the morning because I couldn't sleep, and I would just sit up and stare at my husband while he slept.  I would cry and I would plead over and over in my head, "Please don't leave me. I promise that I'm in here, and I'm trying to get back to all of you.  Please don't give up on me." 

I'm actually crying as I write this because I remember those nights all too well, and just writing about it brings those feelings of desperation back.

I was one of the lucky ones.  My parents believed me--it was through their help that I was able to do the detox in the first place.  I had a husband who, even though he admittedly doubted in the beginning, chose to believe me and fight for his wife.  He literally dropped to the kitchen floor with me once and didn't get up until I did.  He would sometimes just hug me and let me cry.  He openly admits that, in the beginning--before we knew about the silicone poisoning, the damage to my hormone levels, or the Mirena in general being the problem, he was frustrated and doubtful when he would hear about some new "issue" every week and see that nothing was getting done.  You know what, though?  I don't blame him.  It's hard to believe the unbelievable.  This is not a normal situation....but I promise you, gentlemen, it is VERY real.  NO WOMAN would fake that kind of torture for that long.

It's okay to be frustrated.  This affects you, too--it's your family and the woman you love.  However, you can still chose to be the man that she desperately needs you to be right now.  Be a rock for her--some strength for her to hold on to.  BE UNDERSTANDING and BE LOVING.  Don't be mad at her.  Be mad at what this thing did to her. SHE didn't do this to you. Always remember where the blame belongs.  Like I said, she needs you right now more than she has ever needed you before, and trust me when I say that she feels guilty enough for how this has taken her away from her loved ones and her "duties."  I knew that it wasn't my fault, and yet I still felt enormous guilt every day for what I was unable to do, unable to be, for my family.  PLEASE BE THERE.  I truly believe that is one of the reasons that I was able to keep fighting as hard as I did.  Once I finally opened up to my loved ones about what I was going through, I was no longer alone in my fight.  That means more to me than anyone can ever imagine.  I held on to that EVERY SINGLE DAY.

Now, I don't want to end this post with such a negative feeling.  Let me take this time to remind you that I am writing this as a woman who beat this thing...who came back...who is the woman that I used to be.  My husband will attest to it.  He was just smiling ear-to-ear the other day when, during the kids' naps, I was outside doing yard work with him.  I was pulling weeds while we were listening to music, and I was singing and dancing around to the tunes like the big dork that he fell in love with six years ago.  He just smiles and says, "It's so great to have you back."  I agree.  It's good to be back.  I'm happy, I'm healthy, and I'm blessed.  My husband and I fought this together, and we are truly stronger now than we have EVER been.  Honestly.

This can be your story, too.  There IS an end to this...and it can be a happy ending,  I'm proof of that.  Just don't give up on her.  That is your sweetheart in there....and she needs you.

My prayers are with your marriage and family during this time.  Be strong--you can make it.

17 comments:

  1. you are like an angel to all of us the mirena victims. Thank you so much..

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  2. I agree with Cynthia. You communicate it all so well and it feels like such an impossible thing to get a person who hasn't gone through it to comprehend, but you have done it. Thank you. I feel like I am reading about myself.
    Thank you

    Clare xx

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  3. Thank you so much for writing this! I am going to forward a link to this to my closest friends (my support system), and force my boyfriend to sit and read it. Although I have yet to attempt the detox (I have other issues besides Mirena plaguing me right now), I feel like I have at least hit bottom, and am on the way back up. There was a time, just a few weeks ago, that I did not think my relationship would survive this horrible turn of events. Now I at least have some small hope of that. Still, I want to reinforce to my boyfriend that I'm not crazy, it's not "just" anxiety (as so many docs have told me), and that I'm not just making this stuff up for attention. That, I think, got to me the most, when I learned that he thought that may be the case.

    But I ramble. Thanks again for writing this. I especially relate to the part about "if I could just let you feel how horrible this is, just for a moment..." I have said and felt that more times than I can count. While words are a poor substitute for that, your words, at least, come close to embodying the desperation felt by all of us who are fighting the good fight against Mirena.

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  4. You are welcome, ladies. I have received more emails about this post than any other blog post that I have ever written. I'm so happy to know that it is making a difference!

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  5. Wow. I really don't even know where to begin. First, I guess, is that I want to say Thank You for being so honest, clear and specific in your blog. I am relieved to hear that I am not alone and soo sad that I am not alone. I had my Mirena for the full 5 years and it was finally removed in early September. The last 3 years of my life have been a nightmare. I describe it exactly that way. It is like living inside a nightmare. It is like having an out-of-body experience except I can't escape the horrific and terrifying thoughts that invade my mind.
    The most frustrating part is that I have been asking and pleading with doctors that something else was doing this to me, that it was not my mind (although the trauma of this may have a contributing effect now), but that there was something PHYSICALLY happening to me. They all said 'No'. They said it had nothing to do with the Mirena.
    In the last 3 months I have found out more and more that not only was my intuition about what was wrong was actually right, but that it's more extensive than I even realized.
    The Progestin levels start off at like 50mg a day and drop to half of that by mid-life of the Mirena. Progestin has been proven to be dangerous in long-term use, is known to cause anxiety in Parkinson's patients AND will STOP your body from producing natural progesterone. Progestin also depletes your body of Magnesium which is know to be a common deficiency in Schizophrenia and suicide victims!!! HELLOOOO!!!!
    I know I am only just beginning my journey of hopeful recovery but I am still so grateful that I just found this blog and to know that I am not alone.
    Hugs to us all

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  6. I am a new reader. My husband found this site for me. I am having my Mirena taken out monday. This post made me cry just a few weeks ago during a fight my husband told me he wants the woman he married back. All I could say is I am still here. Thank you for writing this blog.

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  7. hey i dont even know where to start. i see the dates on this are a few months ago but I hope u are checking on this still!! i have discovered the evil that is mirena and i would love to see what i can do to take a stand and fight to ban this product! i would also love to educate women who are not being properly educated by their "trusted" ob/gyn's. so im hoping that we can talk and i dunno....i just really want to pursue this so no more women have to go through what so many women have. thank you for your time and god bless!!!! my email is misfitmakeup@ymail.com

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  8. Anonymous--Please email me at lifeaftermirena@yahoo.com! I'd love to chat with with you and help out in any way that I can. Keep fighting, hon. You'll get there.

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  9. I just found this after a nurse at the weight management place told me that my mirena is not only to blame for my weight (I've never had any issues before I had mirena inserted 3.5 years ago) but also to blame for my severe mood swings and feelings of paranoia and thoughts of suicide. I've never in my life felt like this and have no reasons to. I feel like I have my answer. I think I will call in the morning to get this removed. Thank you

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  10. I cried like a baby reading this as I too feel the same way. I have to give an enormous thank you to you and your husband taking the time to reach out and help the others that are suffering. As I have been going through this for 5 years! Thank YOU so very very much!

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  11. I am crying and relating 2000%. Thank you for having dedication to revisit this horrible place so many of us are stuck in and take the time and heart to write this. It brought me comfort and I will be sharing. Your blog is life saving. Thank you.

    Rebecca

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  12. I am crying uncontrollably as I write this. Kristi I can't thank you enough for writing this. This is my EVERY thought and my biggest fear. It's through your blog that I FINALLY got answers as to why I feel like I'm dying at 26. I had my silicone test run and it came back at .56. I had my first consult with Dr J and my detox is on the way. I just can't stress enough how amazingly spot on this article is. Thank you so much and I'm sooooo glad you are back to you!!!

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  13. I am 9 months post removal and I'm worse now than I was in the beginning. I completed my last day of saliva hormone testing today and can not WAIT for the follow up with my dr (holistic md who specializes in hormonal imbalance). This post moved me to tears as it completely captures the out of control, devastating feelings that I've endured, not only while I had the mirena, but since its removal as well. I had the Mirena for 5 years and thought it was wonderful, had it replaced and, within 1 year, I was diagnosed with a mood disorder (medicated with anti-depressants and mood stabilizers), gained 50+ lbs, experienced rage like I've never experienced in my life, night sweats, ice cold extremities, bloating, swelling, exhaustion, facial hair, acne, vision problems and many more symptoms. After doing my own research, I realized that it was the mirena causing it all. I had to fight with several different OBGYNs before I found a doc that would remove it (WHY do we have to FIGHT to have it removed?) and since then, it's been a roller coaster. I feel like someone with dementia with only brief fleeting moments of clarity. The rest of the time I'm an absolutely shell of the woman I once was. I don't feel safe to be around my husband and daughter for the fear of what I'll do or say to be hurtful. I can't control myself and, unfortunately, the real me is TRAPPED here forced to watch. Thank you so much for capturing this, although I hate that ANY of us have had to go through it at all. Your blog has given me hope that there may be light at the end of the tunnel after all. Looking forward to being me again and hoping I can still salvage my relationship.

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  14. this mirena thing is horrible my partner has only had it for just over two months but things are bad its killing me i have no one to turn to we were so close before but ever since then it feels like she angry and cant understand im trying to be supportive but i feel she takes that as controling i ask her to start a diary and i can see how confused she is i no she loves me and i love her so much the other day i got her to sit down and talk she got so upset told me she cant help stuff sometime and she loves me and thanked me for not walking away but now she changed again shes having it removed in a couple of days i just need help im trying to stay strong but its killing me inside i no the real her there but how can i get her to see how can i get her to see things will get better at times i think if i did this or if i done that different im really struggling i keep breaking down into a mess please someone any one i need help

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  15. How long did it take to get back to your old self? I'm trying to fight for my marriage and I'm hoping and praying that once this thing is out of me it will fix most if not all of our problems. I've been married to my best friend for over 10 years! We've been together since highschool and this is not me at all!

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