I DID IT!

Hey everyone...I just wanted to post something to help everyone keep those chins up.

Three years ago, I began graduate school to obtain my master's degree with a two-year-old and a six MONTH old infant. It was just a couple of months later that I became HORRIBLY ill from the Mirena. At one point, I was planning who was going to take care of my babies because I was sure that I was either going to die or I was going to lose my mind....I just didn't know which one was going to come first. I had every symptom in the book: horrible daily anxiety attacks, adrenaline attacks, losing the ability to use my arms and hands, hair loss, heart palpitations, breathing problems, dizzy spells that would make me literally fall over, insomnia, vision loss, a constant feeling of being disconnected with the world and a complete inability to feel joy...you name it. I prayed constantly that my body and mind would heal and become mine again. I BEGGED for that chance...

There were so many times that I almost quit...many times that members of my family told me that I should "take a break" until I got better...but I kept fighting....I kept praying....and I kept persevering....

As more and more time passed, I SLOWLY (unfortunately, too slowly) started to find improvements in my health and longer periods of "remission" between crashes. I am a little over two years post removal (25 months), and although I am not at 100%, I am REMARKABLY better than I once was. It hasn't been easy. I have done four detoxes and continue to take daily supplements.

Last weekend, I was hooded at my master's ceremony--with my now six-year-old daughter and three-year-old son in the audience screaming, "Go MOMMY!" I felt good...I felt strong....I felt happy. I felt like ME.

Overall....I have my life back.

When the bobbles occasionally hit, I roll through them as best I can, and I again celebrate when I am on the other side. They occur fewer and further between one another, and for that I am grateful. Overall, Kristi is back.

I post this to tell you all to KEEP FIGHTING, don't give up, and KNOW that your day IS coming. I know that it doesn't seem like it is ever going to end...but it will....and you will be a stronger woman on the other side of it.

Never forget how strong you are....because you are. One day, this will all seem like a bad dream, but--overall--you will reclaim your life, your mind, and your health--even if it doesn't seem so right now. I was there once.

You WILL heal (slowly, I know)...and you WILL BEAT this thing. I promise.

I genuinely love all of you and continue to pray for your recoveries. Your day is coming.

MUCH love and continued support--Kristi

So we wait....

Just wanted to do a quick update since my last neurology appointment...

I went back in after my "relapse" ended (that one lasted about ten days--numb arms and hands, inability to use my hands correctly, brain fogginess, tingling in my face, arms and legs...), and he decided that he was going to write out an "open" order for another MRI, but this one WITH contrast, for me to do if/when I ever have another relapse.  Of course, I always hope that I won't have another one, but I'm not stupid...I understand that it is very possible....you just don't know.  If/When that occurs, whenever that is (even if it is six months from now), I am to call his office, let them know that this order is in my file, and tell them to immediately send it over to the X-ray office.  Then, I am to do the contrast MRI and take those results over to my neurologist to then compare to the one that I had done last month.

The first MRI shows six "lesions", but since the MRI was without contrast, we don't know if they are inactive or evolving.  When another one is done, he will see if there are more than six and/or if those six have changed/grown/evolved.  If there is an increase in the number of lesions or growth of the size of the current lesions, I will need to go down the road of further testing for MS (since that will be another sign that leads more in that direction).  If there is no change (God willing!), MS will be ruled out, and I will continue to be in the category of "unknown autoimmune disease" (most likely Silicone Immune Toxicity Syndrome).

Soooooooo.....now we wait.  I obviously hope that there will be no more relapses and, therefore, no more need for further testing, but I'm prepared for it should it come to be so.  At least I know that there is this "baseline" MRI in my file now to compare to.  More information is always a good thing.

So far, since that relapse, I have been doing very well!  I'm still taking daily supplements, I did my fourth liver detox right before Thanksgiving, and I am also still taking my extra 2000 mg of vitamin D daily (since I showed deficiency in that area).  Did you know that vitamin is considered a hormone and not a vitamin?  I didn't.  Now that I do, I'm not at all surprised that the level was bottomed out considering the damage that it did to the rest of my hormones there for awhile.   Wouldn't that be great if adding this vitamin D could be the bump I needed to finally stop with these relapses?  Fingers crossed!

Much love to you all!  I hope you had a wonderful and blessed Christmas.  I know that--two years ago--I didn't know if I was going to be with my family on Christmas morning.  This year, I was...and I felt good....and I was happy....and I didn't think about what the Mirena did to me a single time.

Keep those chins up, ladies... It will keep getting better.  YOU will keep getting better.

Results....

Okay....we just got home from my appointment about 45 minutes ago.  By the time the doctor showed up, I thought I was going to throw up.  Good thing he walked in before I did.  :-)

....  Let me try to explain this all in writing.  Here is what I know:

1.  I wish I had an ultimate answer to give you.  I wanted to walk out of there able to say that either 1) I have MS or 2) I don't have MS.  Obviously, I was much rather hoping to stay No.... :-)  I don't really have that answer, BUT this is what I do have....

2.  According to the MRI, the neurologist found six lesions/"hot spots" on my brain.  Could it be associated with MS?  Possibly....BUT, he said that they can also be caused by things like migraines, traumas, etc., and that they can be from an autoimmune response.  So....yes, lesions CAN mean MS, but they don't necessarily mean MS....if that makes sense.

3.  He said that, "I didn't look at your MRI and think immediately that 'Wow...she definitely has MS...which, if it was bad, would happen."  He reminded me that MS is not a disease that can simply be diagnosed with a quick look at a simple MRI....it is a diagnostic disease that takes time to diagnose through various testings, progression of symptoms, etc.....  So, I say that--since he didn't immediately know for sure that it was MS--it is a good thing.  It just means more waiting...and I've been doing that for three years now, so that--I know--is something that I can do.

4.  He did some physical testing in the office--reflexes, responses, etc....and he said that I wasn't showing signs of any nerve damage....another good thing.

5.  He did notice the sharp difference between my right and left eye and that my right eye has had a sharp decline in vision, which is "interesting"; however, he said that, with classic MS, that eye's vision would not be correctable with things like glasses or contacts.  For me, glasses help.  It doesn't give me 20/20...but glasses do help that eye tremendously, so I take that as a really good "anti-MS" sign.

6.  He wants to see me on November 8th (two weeks) to see where my symptoms are at, if they have subsided or worsened, etc.  At that point, if they have not gotten any better, I need to have further testing.  First is another MRI--but this time "with contrast/dye"...that type of MRI will show if the lesions are active/evolving or inactive...which gives more answers.  Also, if it is something like MS, over time, there will be more lesions, they will change, follow a pattern, etc.  At THAT point, we will be closer to an answer.  Unfortunately, with this MRI being my first one, and being without contrast, this has to be more of a "baseline" to start from than an absolute answer.  If there are still questions, I may need to do a spinal tap if he thinks there is reason to.  Apparently, 90% of people with MS will have it show up in the results of a spinal tap.  He doesn't think I need to do one right now, though....

7.  He gave me a prescription for a sleeping pill because he wants to see if, after having definite solid sleep nightly for two weeks, does it seem to make a difference.  Uh.....okay......  I'll do it for these next two weeks until I see him, but that's it.  I don't want to take a prescription strength sleep aid long term, but I'll do it for two weeks just to be able to answer his question.

8.  Since, after whatever happened to me since I had the Mirena inserted happened, I go through periods of remission from my symptoms and "crashes"(which is an improvement from two years ago when I was sick all the time!).  I asked the neurologist, "But what if, in two weeks when I see you, my symptoms have improved again, but then they come back in three months?  That happened to me just again this last time....I was great for three months, and then--all of a sudden--my body didn't work.  What if that happens again?"  His response was, "Then you come see me, and we will do another MRI and further testing to see if anything has changed."

So.........as much as I am frustrated because I wanted to walk out of there with a YES or NO answer, I at least feel like I took a step forward.  Number one, he didn't immediately say that I was a definite positive for MS.  That is great.  Number two, this MRI, etc. was a baseline that I know have to compare in the future.  If I still have issues as the future progresses, they are going to do another MRI (with contrast) to see if I have even more lesions, if these have changed, etc., and use that information to give me a more complete answer.  This first round of testing was a baseline....which is one more step forward than I was a week ago....and I have to remember that is a good thing.  One more step toward an answer that I have been looking for.

So now I wait and just live my life.  I'm not going to live it in a "what if" state....that state sucks.  I'm just going to live and not think about it on the days that I don't have symptoms.  Then, if I continue to have symptoms, or if they return at a later date, at least I know that I get to go back in, use this information that I have now, and get even one step closer to an answer.  Until then, I fit into the category of "Unknown Autoimmune Disease"....

I wish I had an answer for you all.  I wish I had one myself.  But, instead of focusing on that, I choose to focus on the fact that I don't have a BAD answer today.  Today, I don't have MS, the neurologist doesn't diagnose me as such....and we will continue to find answers if my body decides that I need more at a later date.  When I get those answers, I will share them with you--I promise.

Until then....I have to go.  My family is down in the family room watching "The Great Pumpkin, Charlie Brown", and I'm not going to miss it.  Time to get back to life and focus on the answers that I do have....that God has blessed me with a great family and a life to continue enjoying.  So, I'm not going to wallow in disappointment of lack of answers.  I'll get them when I get them.  Until that day, I'm going to enjoy the life that I have with those I love.

I can't begin to express how much all of your thoughts and prayers have meant to me.  I feel them.  I really do.  I appreciate you more than you ever know.

Not a definite bad diagnosis, and one step forward, folks....THAT is what we focus on.

Now....I have a life to keep on living, and that's what I'm going to do.  I have some squirrel-ey kiddos, my sweet husband, a Charlie Brown movie, and a pizza shaped like a Halloween pumpkin to get to.  Life, everyone....chose to live it, and deal with the "bumps" when they show up.

Keep smiling.  It's a choice.  And I have much to be thankful for.  I may not have definite answers today, but I don't have bad ones....and any other ones will come eventually....  It's okay.  I'm getting really good at this waiting thing.  :-)

Love you all--Kristi

Longest. Day. Ever.....

Sooooooo......I definitely agree that it is time for an update.  I'm sorry that I disappeared there for a bit.

Let me try to do a somewhat quick overview of where I'm at.....

I've concluded that I am really great at jinxing myself.  A few weeks ago, I was talking to my husband about how much better I was feeling.  I had even stopped taking my Progon B (natural progesterone) for about three months, and I wasn't feeling like I was a slave to my cycle anymore.  Other than the vision loss in my right eye that never returned, I was really feeling, overall, pretty good.

Then, BAM.....

A couple of Sundays ago, while packing to prepare for a family vacation in San Diego, I woke up just not feeling quite "right"....but not bad enough to really over analyze anything.  I was excited to get going on our vacation, and I had a lot to do....

Within a few hours, I noticed that I was having a difficult time remembering what I was packing, or why I went upstairs, or what I walked into that room for (you know the drill).....

Then, I started feeling disoriented...almost dizzy....

Then my hands and feet started to tingle....and soon my hands got weak.

Before I knew it, I couldn't fold a pair of socks well because it was like I couldn't get my hands to do what I needed them to do quickly enough...if that makes any sense.....

By the end of the day, I was pretty emotional because--like I said--I was doing really well, and now I am suddenly thrown back into this scary, "Oh no, what is wrong with me" mental panic that the Mirena has gifted me with far too many times during the past three years of my life.....  I just finally had to admit defeat, and I went upstairs and cried myself to sleep.

The next day, we still left on our vacation, and--thankfully--I felt better.  Not "normal"...but much better than Sunday.  It was like I felt like I had a "hangover" of some sort from whatever happened on Sunday.  I wasn't suffering, but I wasn't strong.  More annoying than anything.  Over the past two weeks since, I still have these "bobbles" that are just off....or weak....or....whatever....just not quite right.

I told my husband that I wanted to go see my doctor about it, and he agreed that I should.

When I went to see my GP after returning home from my vacation (he has finally admitted to me that he agrees that it was something with the Mirena that made me so sick), I told him what happened on Sunday, and he agreed that--even though many of the women who have dealt with all of this regarding the Mirena ended as MS-negative--what I just described did sound like a "textbook MS flare" and that I should finally officially test for it.  I agreed that it was time....I need to know for sure.   Why?  Because although I hardly ever think about it on my strong days, when I have a day like that Sunday, it all comes flooding back...the fear....the panic....the "what ifs"......

I'm just done with it.  I need to hear a neurologist look at me and say, "I'm looking at a picture of your brain, and it looks okay.  You don't have Multiple Sclerosis....or a tumor....etc. etc. etc."  And if, God forbid, I get bad news, I need to finally accept that and move forward with treatment.  If it is MS, then I obviously have to start a protocol for that to slow the progression of the disease, and if I don't, I know that I need to just keep doing what I'm doing for this "unknown autoimmune disease" that so many of you have been diagnosed with that seems to mimic MS to the letter (minus the brain lesions).    Either way, I'll know.

I did get my blood work back, and everything looks okay except my vitamin D level is too low.  I thought that was interesting, and I am now finding that many women who were sickened from their Mirena are also severely vitamin D deficient.  What is crazy is that I have been supplementing Cod Liver Oil supplements (2 a day for months) to aid in my vitamin D, and I am STILL overly deficient.  I'd hate to know how low it would have been if I wasn't taking them!

My husband looked up a bunch of information on the internet, and I was interested to see that extreme vitamin D deficiency can cause many of the symptoms that seem to have re-entered my life over these past couple of weeks--numbness and weakness in the limbs, cognitive difficulties, joint and muscle pain, extreme fatigue, etc.....

I also see that many people with MS are vitamin D deficient; however, people who are vitamin D deficient do not necessarily have MS.  So........I am PRAYING that my result is going to come back as negative because I need more time.  I now know about this deficiency that I can address (the doc has me taking an additional 2000 units of vitamin D3 per day until I get can my levels up) before my body gets "broken down" enough to officially go into Multiple Sclerosis.  That is my prayer...."I need more time.  Please don't let me find out this information and have it be too late."

Which leads me to today.  My brain MRI is done, and I meet with my neurologist in two hours and 15 minutes to find out if I do or do not have Multiple Sclerosis.  I'm not going to lie....I'm nervous.  This day is taking forever.  Please-O-Please-O-Please-O-Please.......

I got this text from my husband (who is at work):

"You are heavy on my heart and mind, babe.  No matter what today brings, we are still going to live an amazing life TOGETHER.  I love you more than life itself."

I'm a lucky woman.  You hear that, Mirena?  You didn't take everything from me.....

Either way, at 4:00 today, I am going to know (and, thankfully, my husband is going to be there at the appointment with me), and--of course--I will continue to share my journey with you all.  I just wanted to give you an update and remind you again that I am here continuing to fight right along with you.

I promise to post my results tomorrow.  Please pray for me as I continue to pray for all of us.

All my love and support to each and every one of you--Kristi

This just makes me SICK....

Okay....  So, let me get this straight....

Before I had my Mirena inserted after my daughter's birth, the Mirena was ONLY to be marketed to women in a monogamous relationship who have had at least one child (for a lower risk of the uterus being unable to handle it/keep it from expelling or perforating the uterus).

THEN I find out that--when the Mirena was first marketed, the doctors were told that it was NOT supposed to be used in nursing mothers because nursing causes the uterus to contract and therefore increase the risk of perforation/damage to the body.  I find this interesting considering that it was given to me BECAUSE I was nursing and it was a "safer option" for my baby.  Whoopsies, doc.....

THEN I find out, by the time Mirena #2 came into the picture (only 2 1/2 years later) that it went from being marketed to only women who have had at least one children FOR SAFETY REASONS...to now being given to any women who simply wants a lighter period.  Hmmmmmmmm.....apparently, the safety issue didn't matter anymore.  Convenient....

THEN I find out that the Mirena uses the exact same ingredient for its contraception as THE MORNING AFTER PILL.  Something that a woman can take as a one-time "oops" that is strong enough to kill off impending pregnancy is what is consistently dripping into our systems every single day for five years straight?  Wow....I'm shocked that this isn't working out well for our health.  Oh...hey doc....you forgot to tell me that, too.

THEN I get this article in my inbox (click below):

Mirena--Now for teenage birth control

WHA-WHA-WHAAAAAAAT??????  Something that, only three years ago, was stated as only safe for women in a monogamous relationship who have had at least one child, has then gone to, "Oh, wait....you can have one if you just want your period to be lighter....and now we are at, "Hey...if your teenage girl is having sex, and you think she may not be able to remember to take a pill, put a Mirena in her."

You have GOT to be kidding me.

I remember being a teenage girl.  Your hormones are already ALL OVER THE PLACE.  I can't even imagine going through the hell that I went through two years ago when I was a teenager.

I read the announcement that it was now to be marketed to teenagers, and--I'm not going to lie--it made me cry.

So great....let's get a bunch of young girls on a birth control that will now make them NOT use any sort of protection that protects against STDs, AND let's put something in them that is making women so sick that they commit suicide or feel like they are going insane.  Great....yeah....let's shove one of those in a fifteen-year-old girl.  How could that possibly go wrong?

All about the almighty dollar....

What is WRONG with people?????

You're doing great....

On September 2nd, I hit my two year anniversary from the day that I had my Mirena removed and starting fighting to get my life back.  

It gets better ladies....KEEP GOING.....  

Just a reminder....

You've got this, ladies.

Keep fighting.  You're doing great.

Irony....

I have to say that I have a bit of a chuckle going on.  Gotta find humor in a humorless situation sometimes....

Does anyone else find it ironic that we got the Mirena to avoid taking ONE pill a day, and now I have to take 8,434,154,950 pills a day to counteract what it did?

Well, THAT seems a bit pointless now.

Just one day...

So, I am very happy to say that, lately, I have actually been feeling really good.  Detoxing again was a really good thing, and it seems to have re-set my system again.  I'm hoping--ultimately--that it was the final necessary detox for me, but--if not--that it will give me even more time before my systems start short-circuiting again.  As of now...I feel great.  I feel as normal as I think I will probably be.  What I mean by that is that the only symptoms that I still have to deal with right now are the vision loss and the joint/back pain.  I have just come to accept that those two things just may be permanent damage.  If so, I have to accept that...and I will.  I can at least function with that.  Luckily, all of the other symptoms seem to currently be gone.  I can't tell you how happy it makes me to be able to say that.  There was a day once when I didn't know if I ever would.

I wanted to show you something, though....

I still have to actively work for my health.  My body is not at a point where it is naturally strong or working the way that it normally would.  I have to feed my body supplementation for it to run at a level that most can do without it.  For 20 months now, I have to fuel my body with extra supplementation every day.  It's a pain....yes....but I do it because it makes a big difference for me.  Eventually, my systems should rebuild themselves and be able to run correctly without them, but for now, I do what I need to do to feel good.  I thought maybe you would like to see what that is.

This is one day of supplements for me.  Yep....one day:

It's surprising that I don't sound like a change purse when I walk, huh?  :-)

I'm not posting this to discourage anyone.  Some seem to get better without all of this, and some need even more interventions than I do.  You just never know.  I'm thankful that I haven't needed any surgeries or anything--many have.  So for now....I will happily take these and be so grateful that I have the opportunity and ability to do it for myself.  I'm just posting this to further get the word out that this is something that the Mirena can do to you.  Almost two years after removal, I have to do this--every day--just to have my body work normally.  When I take them, I feel great....when I don't, I slip fast.  At least these are all natural, whole-foods supplements that feed my body in a healthy way.  No more synthetic poisons for this girl if at all possible.  One day, I'm convinced that I won't need all of this.  I'm already celebrating that day.  For now, this is part of my daily fight back.

Thanks, Mirena.  Keep fighting, ladies.  I'm right there with you.

What a difference a detox makes!

Wow.....Let me say that again.....What a difference a detox makes!

As you all know, I just completed my third detox since having my Mirena removed.  I had one about four months after removal, another one about six months after that, and this one was about a year since my last one.  I knew that it was time because I was getting a resurgence of symptoms that had been gone for awhile.  I was frustrated, but I am happy that it seems like I am given a longer and longer period of time before I have to detox again.

I just wanted to let everyone know that I feel so much better now.  I completed my detox about a week ago.  It made a big difference.  The month before I detoxed (last month), I struggled through almost every transition of my cycle.....dizziness, problems thinking, weak hands, issues with my breathing (that was starting to get really bad again).  I detoxed for the three weeks again, and I can honestly say that my entire last cycle just came and went, and I hardly even noticed it.   I was traveling for a family wedding, finishing up my most recent grad school course, potty trained my little boy, and I felt strong through all of it.  Thank you, God.

Talking with Dr. J., I think I am going to be a bit more proactive on the detoxing for this next year.  Instead of waiting until I am symptomatic, I am going to do a detox every 3-4 months or so for the next year just to REALLY keep my blood and organs clean instead of waiting for all of the toxins to build back up. It's a better choice for me because when I start becoming symptomatic again, I go downhill FAST.  I've learned that the past two times I've had to detox.  I start getting one symptom, then two more, etc., until--by the time the box of the detox reaches my front door--I am practically sprinting to the door to get it because I feel so sick.  Maybe if I do a few detoxes while my system is still strong, that will be it.  One can always hope.

One thing that I have definitely learned through this is that, as much as I wish it was, this sickness that the Mirena throws some of us in is not one that you can always knock out in one detox and then you are done.  Now, you just never know.....I know women who were back to feeling great within just a couple of months after the first detox.  I also know far too many ladies who are three years after removal and still struggling consistently.  I am currently at 20 months post removal.  I have good days.  I have bad days.  I've learned that the detoxes really help me.  Unfortunately, it isn't a "one and done" scenario for me.  It may not be for you either.  I keep my chin up and remind myself that--with each detox--I am getting more and more of the poison out of my tissues, and that is a good thing.    It's not cheap.  I wish it was.  I'm 35 years old, and I have to have help from my parents to be able to do these detoxes because I can't afford them on my own.  It's humbling and embarrassing....but at this point, there is nothing else that I can do.  I'm just so thankful to have people in my life who are fighting this with me.  I don't like to even think about where I would be without them.

I am also starting, this week, on some new supplements that I've never taken before.  I'm hoping that it might be that "magic cocktail" that I need to finally get rid of these last stupid symptoms that seem to want to stick around.  Pray for me?

As always, I will keep you updated.  But for today....I feel GOOD--and I have for a few weeks now.  And for that I am so thankful.

As all of you women know all too well now....each good day is such a gift and one you should grab with both hands.  More and more are coming for all of us.  Keep fighting.  Love you all.

How I met "Dr. J."

I've had some people ask me how I came to meet Dr. Jennings....once they heard that I live in Arizona and he lives in Kansas.  I'll explain....but let me first ask, do you believe in "God things"?  I sure do.  I think it was a "God thing" that we crossed paths--especially considering that no other doctor was giving me the time of day when I was dying more and more by the day.  Anyway......

When I first had my Mirena taken out, I crashed HARD about a week later...then again two months after that.  I had awful insomnia, debilitating anxiety attacks, adrenal attacks, problems breathing, couldn't think, constantly dizzy, my hands wouldn't work sometimes, you name it.  It was around this time that I forced my General Practitioner to run the silicone blood test.  As I'm sure you remember from my previous posts, he thought I was crazy for asking, told me that it was pointless...yada yada yada....I forced him anyway, got the results back, and YEP....elevated silicone in my blood.  You know that whole story.

When I hung up from that phone call with those results, I was in shambles because I was told, basically, that there is nothing that you can do for that.  "Silicone is a permanent synthetic, and you will have to go elsewhere for any sort of treatment because I (GP) don't even know where to start with that."

I felt so alone...and scared to death.  I was getting sicker by the day, and I now have proof of blood poisoning with nobody willing (or now. in my mind, even ABLE) to help me get better.

Of course, I then do what many do, and I called my mom bawling my eyes out.  Yes....even in my mid-thirties, I just need my momma sometimes.  :-)

(This is where I should explain that I live in Arizona now--after I married my husband--but I lived in Kansas up to that point, and my family still lives there.)

After telling my mother the results, she told me that she used to teach with a woman who, if she remembered correctly, had a son who was a doctor who dealt with "naturopathic healing".  She had no idea if he was in the area, but she would check and get back with me.

Hardly any time passed when she called me back and said,  "He's here....just ten minutes away.  He said that he really thinks he can help you."

I lost it.    Hope.   Thank you, GOD.  I had been praying SO HARD.....

This is where the "God thing" just blows me away.  My mother used to work with his mother years ago, and even though my mom is now retired, she was able to track him down.  That's not it....it gets cooler, so hang with me....

Every other year, we fly to Kansas to my family's house for Thanksgiving.  When I received my blood test results, I was only a couple of weeks from flying there for the holiday.  My husband had to work until right before Thanksgiving, but I was going to take my kids and leave ten days earlier to be able to spend some additional time with my family.  I was going to be there for three weeks total.

When my mom called Dr. J and learned about how he thought he could help me, he brought up the detox.

My mom let him know that I coming here in just a matter of days, and she wanted to get me in right away to see him.  She asked how long it would take for this detox.

His answer:  A 21-day detox.  That's right....three weeks exactly.  The exact amount of time that I was going to be right there, in that state, right by his office.  Hello?  God thing???  Come on, that is just pretty amazing.

I guess you would say that the rest is history.  I walked in his office, he told me that I was right about what was wrong with me (first time I heard that from a doctor), he told me that he could help me get the silicone out (first time I heard that from a doctor),  and I'm sure that was followed by me crying like an idiot.  Honestly, I was so sick at that point, I don't really remember a lot.  I just remember him saying, "If they can get the poison in, I can get the poison out."  Hearing that, and finally hearing a doctor say that he believed me, I had hope again....something to hold on to.  He told me that it would take some time because a detox helps your own heal body heal itself from the inside out.  It's not like a synthetic pill that will just numb your symptoms 20 minutes later.   I told him, "I'll wrap my head in a cow uterus and stand on my head for four days straight if you tell me it will make me better."  Luckily, I learned that Dr. J had a sense of humor, too, so he just laughed and told me that it wasn't going to be quite that bad.  :-)

I still just shake my head at the whole thing.  I can't believe it.  I told my mom that God might have had a reason for putting her in that little school where she taught with this other woman....and it could very well have been because, twenty years later, this woman's son was going to help save her daughter.

Since then, Dr. Jennings has not only continued to help me, but he has since continued to learn more about what has happened to us and now reaches out to so many other women who have also been poisoned by this terrible device.  He was an answer to prayer.  We need more doctors like him.

I was talking to him once about how frustrated I was that so many women were getting destroyed by this thing, and it seemed like I was barely making a difference with my piddly little blog here.  More and more were getting sick--and far faster than I could reach them. For every one woman who read it, there were probably 200 who had a Mirena inserted that same day.   He asked me if I had heard the poem about the starfish.  I hadn't.  I've since looked it up, and here it is:

Once upon a time there was a wise man

who used to go to the ocean

to do his writing.

He had a habit of walking

on the beach

before he began his work.

One day he was walking along

the shore.

As he looked down the beach,

he saw a human

figure moving like a dancer.

He smiled to himself to think

of someone who would

dance to the day.

So he began to walk faster

to catch up.

As he got closer, he saw

that it was a young man

and the young man wasn't dancing,

but instead he was reaching

down to the shore,

picking up something

and very gently throwing it

into the ocean.

As he got closer he called out,

"Good morning! What are you doing?"

The young man paused,

looked up and replied,

"Throwing starfish in the ocean."

"I guess I should have asked,

why are you throwing starfish in the ocean?"

"The sun is up and the tide is going out.

And if I don't throw them in they'll die."

"But, young man, don't you realize that

there are miles and miles of beach

and starfish all along it.

You can't possibly make a difference!"

The young man listened politely.

Then bent down, picked up another starfish

and threw it into the sea,

past the breaking waves and said-

"It made a difference for that one."

His point to me was that, even though it seems like I can't really make a difference compared to how many of us are getting so sick from the Mirena, it could mean a huge difference to that one woman who was possibly reached in time to get her life back.  It was a nice reminder.

Thank you, "Dr. J", for that kind reminder....but even more so, for throwing me back in the ocean.  It made a difference for this one.

Beautiful, and sadly true, art....

Through this experience, I have met (mainly virtually) many other women who have also suffered at the hands of the Mirena IUD.  One of these fellow victims is a beautiful woman named Robin.  Robin is a truly talented artist, and she continues to fight to regain her health as well as the rest of us.  She uses art as a form of therapy and created this:

Keep fighting, Robin.  Thank you for sharing your gift.

So frustrated....

It's been a interesting past few days.....  I don't know what to call it--It's not a full-on "crash", but my body is definitely dealing with some symptoms that have decided to revisit me.  :-(

I'm having a lot of issues with "air hunger" lately.  It's like I just can't get in enough air when I breathe, so I have to constantly huff in these huge gasps of air just to catch up or I start to get dizzy and have to sit down to regroup.  I also tried to work on some grad school last night, and my mind was a jumbled mess, I couldn't process anything to save my life, and my hands were weak.  I finally had to give up because typing was just too frustrating.  My fingers were tripping all over themselves, and it just seemed like the brain/hand connection wasn't happening like it should.  I had to finally stop because it was starting to upset me and make me worried.

UGH....I just want to live like a normal 35 year old.  We have earned it.  19 months post removal, and I still have these stupid relapses.

I'm actually on day 11 of my third detox (I did my last one a year ago), so I'm hoping that it is because toxins are dumping out of my system.  However, I don't remember having problems hallway through the detox before.  I just don't remember.  Trying to keep my chin up, but I also wanted to let you all know that it's not over for me either.  It is a roller coaster from hell that's for sure.  Pretty sad that we can't even get excited about feeling good or symptom free because who knows how we will do tomorrow.

Sorry for the negative post....I know that I'm normally trying to play the "cheerleader" role, but I get knocked down, too, and I have to be honest about it.

My thoughts and prayers are with all of us.

So true....

Stay strong, ladies.  You've got this.

Here we go!

My "Box-O-Detox" has arrived!  Here is what I am taking for the next three weeks:

It is a three-week detox.  Here are my dosages....

Week one: 
                   SP Cleanse--7 pills/3 times a day
                   Gastro Fiber--3 pills/3 times a day
                   SP Complete--2 to 3 shakes a day with 2 scoops in each shake
                   Folic Acid B12--3 pills a day
Weeks two and three:
                   Everything stays the same except I stop taking the SP Cleanse and start taking the SP Green      Food in its place...3 pills/3 times a day.

Wish me luck that the third time is a charm to get these last symptoms to hit the road!

Thought this was funny.....

....and don't we all know we could use a little humor during these times....

For all of us who now have gone into Autoimmune response (our bodies attacking themselves) because of the Mirena:

Roar.

Third time's a charm??? Hopefully.....

Well.... Let's hope that the third time is a charm....because it is that time again.  I have to detox again.

Trying to stay positive here and look at the PROS instead of just the CONS.

CONS:

• I still have some lingering issues that won't seem to go away.  My vision never improved (to be honest, I don't think it ever will), and I still have a resurgence of some issues around ovulation and before my cycle begins (increased brain fogginess, disorientation, joint/muscle pain, trouble getting in enough air when I breathe, etc.).
• I can always tell when it is time to detox again.  I go from only having 2-3 bad days (as far as symptoms) a month to having them occur more often and becoming more troublesome.  Once I get to the point where I'm feeling like I have two good weeks/two bad weeks, I know that my body has found some more toxin in various places, and it's starting to attack itself again.  That's where I'm at now.  Once my hands start to tingle, I know that I need to move fast because, once I start to regain the symptoms, it goes downhill quickly.  I've played this game before.
• Like any autoimmune issue, mine is also one that has periods of remission and relapse.  I have to just focus on getting back into remission by getting more toxins out and giving my organs and tissues a period of relief.

PROS:

• It seems like, each time I detox, I have a longer period of time before I start becoming symptomatic again and have to detox again.  The first time, it was four months.  The next one was seven months later.  This one is eleven months later.  I made it almost a year.  I have to think that, eventually, the toxins will be gone...or at least low enough that it doesn't break me down anymore.
• I know that I will feel so much better in just a matter of weeks again.  I have to focus on that.  With my condition, my body finds these silicone micro globules and whatever else (lingering synthetic hormone?), and it starts to attack them.  Unfortunately, there is some confusion with autoimmune response, and it attacks everything where it is located....so it attacks the healthy tissue that is there as well.  That is when I start feeling so awful.  My body is tagging areas for destruction and attacking it.  Sooooooo.....I just have to keep detoxing when needed to pull out those toxins (which I know happens because I proved it with silicon blood test results pre and post detox) as they emerge so that my body won't have anything to "tag" for destruction.  No silicone or toxin to be found = no body turning on itself.  Knowing that is coming for me again gives me something to look forward to.  Symptom free days again.....ahhhhhhhh....
• Here's hoping that this one is IT.....and, if not, maybe this one will give me 15 months...or two years....who knows.  Pray for that, please?  I believe in the power of prayer, I would greatly appreciate yours if you would be willing to toss one up for me.
• Along with the detox, Dr. J. is sending a few more supplements that I've never taken before (to deal with certain symptoms, cell renewal, etc.), so that gives me hope that--God willing--this will be the "magic cocktail" that will make this struggle finally go away.  As always, I invite you to walk through this with me.

My love to you all.  I'm going to beat this.  So are you.

Keep fighting,

Kristi

Dr. J.--Video on Silicone Toxicity

Another huge thank you to Dr. J.!

He has a video out to try to explain silicone toxicity, and I'm sure he does it FAR better than my feeble attempt in my last post to you all.  Here it is!  I hope it helps you to gain understanding:

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

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)
Anxiety
Cervical and axillary enlarged or painful lymph nodes
Fibromyalgia (multiple tender areas)
Myositis (painful inflamed muscles)
Fatigue
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.

Ignorance...

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, doc....you 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."

WHAT??????!!!!!!

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 detergent.....wow.

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.

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"...so 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, folks....it 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.

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.