As promised....my update.

Hey everyone.  Thought it was about time for me to give a detailed update on how I am doing, where my symptoms are, etc.  I'll try to cover everything that I can think of, so bear with me.  :-)

What I will do is write down a list of what all of my symptoms were at the beginning of this whole thing (two years ago!), and then I will write a description following that explains where I am with that symptom now.  Please feel free to put any questions that you may have as a comment, and I'll be sure to respond.  As far as a timeline, I had the Mirena removed about 14 months ago.  However, my symptoms were starting to really affect my life about a year before that.  I had the Mirena in for 17 months before I made the connection and had it taken out.  I had the Mirena inserted in April 2009, and I had it removed September 2, 2010. 

Okay, here we go:

LOWER BACK/HIP PAIN--This was probably one of my very first symptoms that I got (probably 2-3 weeks after insertion) that just didn't make any sense.  I knew that I didn't do anything to injure my back, and suddenly, I was having multiple days where my lower back hurt so bad that I would just lie down and cry.  I went to the chiropractor and a massage therapist constantly, and it just wouldn't help.   UPDATE:  I still have some residual pain that seems to creep up randomly still, but it is nothing like it was.  I can say that the excruciating pain went away right after I had the Mirena removed.  Now, I have some lower back pain every once in awhile, and when it hits, I have a difficult time leaning forward without pain.  It comes and goes.  However, 95% of that back pain went away the moment I had the Mirena removed.

ANXIETY/PANIC ATTACKS--Anxiety was probably the issue that first really made me wonder, "What is going on?"  When it first started, it was minor...things like noticing that I was much more emotional during various times of the month, etc.  Soon, though, the anxiety got to the point where my heart would race, and I couldn't "talk myself down" from it.  I remember, before I got really bad. and long before I made the Mirena connection, talking to people I knew who suffered from anxiety to see if that is what it was.  Before I had the Mirena, I never had a single anxiety episode in my life...not even close to one.  By the time I was at my worst, the anxiety was, by far, my most debilitating issue.  I was having panic attacks that would hit me, not just during the day, but also in the middle of the night while I was sleeping.  There would be times when I would literally pace from my front door to my dining room table and back to my front door...over and over and over....for hours because my body would not let me be still.  I couldn't sit, or I just felt like my body was going to explode.  It felt like my blood was on fire or I had so much adrenaline pumping that I had to keep moving or something terrible was going to happen to my body.  This is a tough one to explain.  I remember trying to carve Halloween pumpkins with my family last year, and I had to leave the table because I simply couldn't do it.  Instead, I went up to my son's nursery, sat in the glider/rocker, and rocked back and forth for two hours bawling my head off because I couldn't even carve a stupid pumpkin with my husband and kids.  I can honestly say that, for whatever reason, my anxiety got worse right after my Mirena removal before it got better.  By what I'm hearing, it was because of the immediate yanking out of all of those hormones and my body was unable to make its own progesterone anymore.  I went from a TON to NONE, and I think I went into almost a kind of hormonal shock.  I'm sure it is part of the now famous "Mirena Crash" that we read about.  The attacks were random and spontaneous.  I remember sitting in a Boston Market restaurant with my two kids when one hit out of nowhere.  Nothing stressful was going on at all.  I was having a wonderful lunch with them, and suddenly my heart was racing, my vision was blurring, and I knew that I had to get out of there.  I grabbed the kids, put them in their car seats, and just sat in the front seat for 45 minutes until I knew that I could drive.  I remember telling my doctor that, out of all of the symptoms that was suffering from, if I had to choose just one for him to fix, the anxiety would be it.  I lived in constant fear of when the next one was going to hit, and when they did...they were AWFUL.   These were attacks that I wouldn't have wished on my worst enemies.  This was the time I completely disappeared to most who knew me.  Even my friends didn't really know where I was because I simply vanished for about 7-8 months.  It was because--at my rock bottom--I was pretty much unable to leave my house very much.  The thought of doing anything was simply too overwhelming.  I can't begin to explain how much that is NOT like me.  I love doing new things, meeting new people, loving life....but during those months, it simply became far beyond what I could handle.  When I did make trips out (because I forced myself), I can't even begin to explain how hard I had to pretend to be okay.  I remember being unable to do laundry some days because the thought of needing to walk up the stairs and separate the laundry seemed too overwhelming.  How sad is that?  Many times, I would have so much adrenaline pumping during the attacks that my body would just shake uncontrollably until I would finally vomit.  UPDATE:  Praise God, this symptom is now a thing of the past! The main difference was noticeable right after my very first three-week "turbo detox".  It included all of those supplements every day (see my post for that information), infrared sauna treatments about every other day (to sweat out as much of the toxins as I could while my liver was detoxing them out, and what I could call "liver zapping" where I had to lie on a table with this patch over my liver that would send currents/little shocks into it to help it with the toxin overload.  When I came back to my home three weeks after my detox, I walked into my front door and started crying because it was the first time that my head seemed clear....like I was really present there--in my home--in a very long time.  I stayed feeling great for four months before my next "crash" hit and I detoxed again. 

(As far as my crashes are concerned [the times when all of a sudden all of my symptoms returned and I was really sick again], I crashed 2 weeks after removal, 2months, 4-5 months and again at around 8 months.  I detoxed twice but have never gone without some level of supplemental support.  I currently take probably around 80 a day to support my systems.  I haven't crashed since, and I am now at 14 months.  Yes, it is a lot, and I am looking forward to the day when I won't have to take them all anymore, but I compare it to the fact that I am taking only whole foods based natural supplements--ZERO medications (because they are synthetic...which would just add more poisons/toxins to my system).  To me, it is important because one day, I will be able to walk away from this and not have to worry about being dependent on any sort of anxiety meds or heart medication that they tried to make me take.  I do think the fact that I have been placed on bio-identical progesterone has helped tremendously.  Until my body can figure out how to make its own progesterone, I still need to take it twice a day.  I am still holding out hope that my body will eventually get strong enough to fix that.  Every month gets better and better, and I just keep focusing on that.

ABDOMINAL PAIN--When it was at its worst, I did have an appointment with my OB/GYN where one of the nurses did an ultrasound on my abdomen and told me that I had pockets of blood in my abdomen.  UPDATE:  Thank goodness, this is another symptom that has been completely healed.  I'm guessing that they have since reabsorbed because I don't have that constant pain anymore.  The only time that I hurt is during ovulation--lots of pain during those couple of days--but I will explain all of that later in the post.

BLURRY VISION/VISION LOSS--UPDATE:  Unfortunately, this is a symptom that didn't get better.  Some days, my vision is blurrier than others, but my eyes are really struggling.  As far as my right eye, the vision tanked soon after I had my Mirena (I have it in my file what my vision was before, and by a year and a half later, I fit the "legally blind" category for that eye.  I wish I could tell you all that it has improved, but it hasn't.  I think I am going to just have to accept the blindness that occurred. 

HEARTBEAT ISSUES--Back when I had my Mirena, I got to the point where my heart rate was just jumping all over the place.  UPDATE:  Thankfully, that symptom has completely gone away!

BREATHING ISSUES--UPDATE:  This is, unfortunately, still something that I am dealing with.  Some days, I don't have a problem at all.  However, on some days, I have a really difficult time with my breathing.  The only way that I can describe it is that it feels like I just can't get in enough air/oxygen when I take a breath.  On those days, I have no choice but to constantly "huff" in big gasps of air to keep from getting dizzy.  I'm thinking about seeing my doc about possibly getting an X-ray of my chest...just to make sure that there is nothing that I need to address there.  I'll keep you updated.

TEETH CLENCHING--I know....weird.  I hit a period right before my Mirena was removed when I could involuntarily clench my teeth as hard as I could, and I wasn't doing it myself.  I would sometimes do it to the point of my jaw hurting, and yet I couldn't unclench them.  UPDATE:  Thankfully, that is another symptoms that is long gone. 

AWFUL MOOD SWINGS--This is one of those symptoms that you hate to ever admit that you dealt with but, like I promised, I won't lie or sugarcoat anything.  Back when I was at my worst, this was a very real issue that I was dealing with.  For those who know me, I am just about one of the most "let's enjoy life" kind of people who just doesn't get worked up about much.  However, at my worst, I would have these mood swings that would take me from feeling absolutely fine one moment to literally feeling like my blood was boiling and I wanted to scream....and absolutely nothing happened to get me to that point.  I've talked to a lot of women who feel a lot of guilt about that symptom because they got to the point of throwing things, etc.   I never got to that point, but I can honestly say that there were times where I felt like I could have on the inside.  When I would start feeling that, I would literally get up, remove myself from any other people, and either go on a walk or go into my son's nursery and rock back and forth in the glider until I could feel that feeling pass.  UPDATE:  Thankfully, this is a thing of the past!  I don't have any more of the huge "up and down" swings that I used to have.  Honestly, the only thing that I notice is that sometimes, at the end of my cycle, I do have moments (an hour here or there) where I can feel really "uneasy" and I know that there is no reason for me to.  It is minor enough, though, that nobody would ever know, and it passes quickly.   I have been told to take an extra progesterone pellet on that day because it is probably a progesterone issue.  I am happy to report that I am back to my happy-go-lucky self most of the time.  I'm not proud of that symptom, but I'm not hiding from it either.  I have to own it as part of my past journey....but I'm just glad that is over.

"PATCHY" GOOSEBUMPS--Yes, I know how random that sounds, but was part of my symptoms.  UPDATE:  Unfortunately, it is one that I still occasionally get.  I will, out of nowhere (I don't even have to get cold), get goosebumps.  But, they are not normal goosebumps that cover my whole body.  Sometimes, it will just be one leg that gets them...and sometimes it will be various spots on my body but in a weird pattern that doesn't cover the whole area.  I have no idea what that is all about, but I still do it.  They don't hurt or anything, but they sure do feel strange.

I also sometimes have an insensitivity to extreme temps.  I was just in San Diego for vacation, and we went to the polar bear exhibit.  It was obviously cold in that building, but we were only in there for maybe 10 minutes.  My hands got ICY cold.  When I got out of the exhibit, my hands started doing that "thawing out" thing where they actually felt like they were burning a little.  That burning feeling in my hands lasted for two days!

NUMB/WEAK HANDS AND ARMS--As I'm sure you remember from my earliest blogs, this was the symptom that really made me jump into action because I knew that something was horribly wrong.  Here I would be...everything just fine....and then all of a sudden, I couldn't feel anything from my elbows to the tips of my fingers.  They just went completely weak and so numb that it felt like my lower arms/hands simply didn't exist anymore.  I think this was about the time that husband really started to take serious notice that something was really wrong with me.  I remember him coming up to the office upstairs one day while I was working on grad school, and I was just crying at the computer.  He asked me what was wrong, and I remember just staring at my hands at the keyboard and saying, "I can't type anymore....I can't feel my hands....Why can't I feel my hands?"  It was so scary.  I couldn't pick up a glass take a drink....nothing.  At this point, this was when my doctor wanted me to start of the route of seeing a Neurologist and get tested for Multiple Sclerosis.  I was two weeks away from setting up my lumbar puncture/spinal tap when I found out about the silicone poisoning in my blood, and I left to do the detox.  UPDATE:  PRAISE GOD, this is symptom that went away as soon as I completed my first detox. 

INSOMNIA--At my worst, I would get about four or five hours of sleep every three days.  Nothing would help.  I remember crushing two Tylenol PMs into powder and drinking them down, and it still wouldn't help me.  This is obviously not a symptom that you can handle for very long.  I would be so exhausted, want nothing more than to sleep, but I simply couldn't.  It felt like my brain was going a thousand miles a second at all times, and it wouldn't let me sleep.  It got to the point where I would have my three days of no sleep, and then I would crash, my husband would have to take the day off of work while I was pretty much unconscious upstairs, and then I would wake up....only to start the cycle over again.  Going that long without any sleep surely doesn't help the feeling that you think you might be losing your mind, that's for sure.  UPDATE:  Again, I am thrilled to announce that this symptom went away after my first detox and it hasn't been a big problem since.  I have some nights where I wake up a lot with night sweats because of the hormone damage, but it isn't anything major. I can't even begin to explain how nice it is to say that symptom is a thing of the past.

EXTREME AND CONSTANT FATIGUE--At my worst, I spent most days in such a state of fatigue that I could hardly function.  The only time I would have any energy was when I was in the middle of a panic or adrenal attack, and then I would immediately return to this state of feeling like I just ran a marathon in cement shoes.  My body had nothing with which to function, and my mind was so sluggish that I was just this empty shell of a person who wished she could walk across the room.  UPDATE:  This symptom is soooooooo much better.  Like I explained in an earlier post, I have my "good days" and "bad days".  Depending on where I am on my cycle, I have days where I have fantastic energy and you would never know that I ever had a problem, but I still have days (usually around ovulation) where my body and mind just feel exhausted for no reason.  Everything seems more difficult to do on those days.  Luckily, though, they are sporadic and much less frequent.

JOINT/BONE PAIN--Don't ask me about this one.  Like I said before, I swear, this thing gave me Osteoporosis or something.  UPDATE:  Don't get me wrong, I have days where I feel fine, but wow....I have days where it feels like my joints are on fire and my bones hurt.  I can't even walk up my flight of stairs without having to sit for a bit on my bed because my legs hurt so much from doing it.  I also have a pretty consistent relationship with my chiropractor now because my lower back will start slowly getting more and more painful when I try to bend forward, he will work on me, and I will feel better for a period of time before I need to visit him again.

Okay....I think that addresses all of the issues from when this all started for me and discusses where each of those symptoms are now.  One thing that I will try to discuss in my current struggle with ovulation.  I am thankful that--even though it is a painful/difficult couple of days, at least I am ovulating.  I know way too many women who had this stupid thing throw them into early menopause.  I'm glad that my body is still ovulating each month....it is just VERY hard.  It honestly feels like, during those two days, my body and hormones have to put so much focus on trying to ovulate that the rest of my systems have shut down a bit to make it happen.  It is the weirdest (and very frustrating) thing.  When my body enters that window of ovulation (which lasts 24-48 hours like for most women), EVERYTHING hurts...and everything is so much more difficult to do.  My abdomen hurts, my joints ache, I'm so tired I can hardly stay awake, and my mind is a jumbled mess.  My vision worsens, and I have such a horrible "brain fog" during those two days that it is sometimes difficult to have a coherent train of thought.  And then....as quickly as it began, and as soon as my body ovulates...BAM.  It is like someone immediately turns back on all my light switches, it is like it never happened.  I have done this long enough now that I just know that, when it is time and I start struggling, I need to just dig in my heels, do the best I can, and remember that in just a couple of days, my body will snap right back out of it.  I am hoping that, now that I am doing the bio identical hormones to clean out the rest of the synthetic hormones, that this part of my body is not permanently damaged.  It is my hope that, as more time passes, my body will figure out how to makes its own progesterone again and be able to ovulate normally without everything else suffering in the process.  For goodness sakes, before all of this, I couldn't have even told you when I ovulated--it was that uneventful and symptom free.  I'll keep you updated on how that progresses.

Okay....I know that this was a really long post, but I promised that I would give an update.  I remember when I was so sick how much I would check in to the forums and see if anyone posted an update and how they were doing, how long it took, etc.  Overall, I would have to make a general statement that--out of everything that I suffered from, all I have left at this time is partial blindness, bone/joint pain, periodic issues of feeling that "brain fog", and a very difficult ovulation window (okay...it's a bit funny to preface that with"all I have left is"...).  Yes, that stuff is unfortunate and very frustrating, but when I compare it to where I was a year ago....there isn't even a comparison.  I have my life back--yes, I still have some struggles here and there that shut me down a bit--but nothing that I can't handle.  I will continue to take the supplements and bio identical hormones until I no longer need them...continue to pray for further healing...but celebrate the HUGE strides that I have made so far.

I promise to keep doing it for you.  Hope it helps.  Please let me know if you have absolutely any questions.

Keep fighting ladies.  We are all still in this together.  We are just all at different parts of the race.  Hopefully, I am nearing the end of mine (and if I'm not, I will continue to be honest about it), but know that I'm staying there at the finish line until you can join me.  It can happen for you.  Don't forget that, and don't lose faith that will.  What a day of celebration that will be!

Big hugs coming at you.  Have a fantastic week.