Category Archives: Mirena Recovery

My skin has been breaking out in swathes of pimples and streaks of rashes, thanks to my ongoing Mirena cleansing process.  With buckets of toxins and bad hormones oozing from every pore, hair and skin has taken the worst beating.  Coarse and wild, my hair resembles a horse’s uncombed tail.  But my face!  Oh, the horror.  I used to look in the mirror and say “Hey, not bad.  I can leave the house without makeup”.  Now I resemble someone slapped across the cheeks with a hot waffle iron and then squirted with olive oil for good measure.  Yuck.  I pamper my skin, but lately every well intended product just scatters more red welts across my cheeks.  Even the most gentle of moisturizers has left my face dry, itchy, and pitted, with pores large enough for someone to dive into.  Gross.  I couldn’t wear makeup, much less wash my face, without inducing yet another flare-up.  My skin has never been so sensitive or so irritated!  What to do?!

 

2014-07-03 09.28.42Fortunately, I remembered a special purchase during my recent trip to South Dakota.  I visited Prairie Edge, one of my favorite shops, in Downtown Rapid City.  Tourist attraction, souvenir/gift shop, Sioux trading post, history center and art museum rolled into one gorgeous historical landmark, Prairie Edge is nestled on the corner of Main Street and 6th.  The best is the Sioux trading post.  While my rowdy children fingered sumptuous fox tails and exclaimed loudly over the price of bison sinews and leather pieces (and I pretended they weren’t my offspring) I stared at the herbs and prairie plants.  One whole corner was dedicated to medicinal plants and herbs used by the Lakota.  Sage, the predominant healing herb, took up much space, but many other fascinating products caught my eye.  One was a small tub of salve labeled Ha Pejuta, or Skin Medicine in Lakota.  The ingredients are natural — wild bergamot, arnica, calendula, lavender, garlic, tea tree oil, olive oil, grape seed oil, and locally sourced beeswax — no chemicals.  The label states “This salve stimulates circulation and heals”.  I purchased it and a bottle of sweetgrass hydrosol, a distilled liquid smelling of the delicious water grass.

On the first night using the salve, my skin was so sensitive I could hardly cleanse without crying!  Gently dabbing the sweetgrass hydrosol over my face with a large cotton ball cooled the irritation.  Next came a few drops of tea tree oil on my T-Zone, then I rubbed a little Ha Pejuta over my face.  My skin was still very sensitive and at first the salve stung, but within a few minutes my face felt warm — the salve was living up to its claim!  The next morning my face looked clearer.  Cleansing still proved uncomfortable, but I followed the same pattern; soap for sensitive skin (the only part of the routine that included any chemicals), sweetgrass toner, tea tree oil, and Ha Pejuta salve.  I then added a dab of moisturizer with sunblock.  The salve created a barrier over my skin so I could add sunblock or moisturizers without causing further irritation.

For one week I followed the same regimen and tried not to wear makeup if possible.  The dryness and oiliness has resolved and my pores have shrunk.  The raised red areas smoothed out and disappeared.  My skin has even started to glow again!  I also made my own facial mask: a cherry tomato plucked from the garden, a dash of lemon juice, and a sprinkle of rolled oats, all pulverized in the blender with a bit of water.  I spread the mixture on my face and let it set up for 5 minutes, just enough for my skin to feel tight.  I will continue to use my Ha Pejuta salve to protect and heal my skin, and keep my fingers crossed for better facial health this summer!

2014-07-03 09.23.58

Just pulse in blender or food processor with a few drops of water and you have a homemade facial mask!

Update: After going back to my former skincare routine, my face started to look kind of blah again.  My chin broke out and I noticed dryness as well as oiliness on my nose and forehead.  So I believe the Ha Pejuta salve made an improvement.  Not wearing makeup for several days also didn’t hurt.  If you need a facial overhaul, you don’t have to buy Ha Pejuta, but try tea tree oil and a salve based on natural ingredients and try to avoid products with chemicals.  See if it helps.

— G

 

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Medical Misfit

Nurse uniform in the 1900's.

Nurse uniform in the 1900’s. (Photo credit: Wikipedia)

Yesterday a phone call from an endocrinologist’s office left me seething. An administrator — she didn’t offer a name or title — indicated in a polite but vaguely superior manner that I was not requesting services at the correct clinic.  There was an icy undertone, as if the fact that she had to contact me to explain all this was putting a huge strain on the clinic’s resources.  It took me a good ten minutes of  cajoling, conniving, convincing, and just plain bullshitting to get her to understand that it wouldn’t be a complete waste of the endocrinologist’s precious time for me to come in, but it wasn’t until I uttered the magic word ‘fibromyalgia’ that she granted me status as a legitimate patient.  What is this place, anyway?  Am I creating such an inconvenience that I cannot be seen by this doctor unless I successfully pass vetting by a bureaucratic toady with a list of secret code words?

I was not surprised that the doctor at this clinic was reluctant to take me on as a patient. My referral, sent weeks ago from my PA at Fort Riley, had been rejected on the grounds that  my “specific” needs did not “encompass” the doctor’s specialty.  It was a possibly a coding error made by the insurance company making the authorization for services. The nurse from my referring clinic spent several days making phone calls to the clinic as well as my insurance company on my behalf, smoothing over the misunderstanding and pleading my case. I don’t know if that is even part of her job, but she knows that I am sick. She has seen me too many times over the last few months to not want to help. And she must have deduced from the cryptic, noncommittal responses coming from the endocrinology clinic that I would need a champion.

It’s been difficult to get good medical care in Kansas.  My tiny local Veterans Affairs clinic seems to always be bogged down and overwhelmed; I can’t get in but once or twice a year, and that is just for routine blood tests or ‘Well Woman’ visits.  God forbid anything goes wrong in between!  When I lived in the Black Hills, I had the best VA care.  If a non-emergent matter arose, chances were I could get a same day walk-in appointment, and the staff listened to my needs.  Here the story is different. During a non emergency episode when I needed immediate advice (which happened in between my allotted visits), the local VA staff either misunderstood or misjudged my situation, leaving me to seek medical attention elsewhere.  After the incident I plan not to return to the clinic.  Luckily I can still turn to the clinic at Fort Riley, where I trust my physician and nurse.  The problems arise when they have to refer me to specialists.

I realize that it’s a Me Problem.  It’s not the world that’s strange, it’s me.  I’m the misfit.  I take supplements of turmeric and holy basil and treat hormonal breakouts on my face with a salve made from an old Native American recipe.  I use cabbage poultices and rub herbal oils on my forehead  to fight off migraines.  I am treating my current ailments using natural remedies instead of chemicals and drugs.  I abhor drugs.  I am probably a traditional doctor’s worst nightmare. So if/when I go to a specialist and invariably open my big fat mouth to spout things like “I am researching home remedies and the use of ethnobotany for possibly treating my migraines and hormonal imbalance” or “I really don’t want to take any more pills” I run the risk of being written off as a crazy jackass.  Even the mere mention that I take herbal supplements and seek chiropractic care results in odd looks, as if I am lapsing into an unknown language during the dialogue.

Yet my specialists don’t seem to take the time to actually read the medical records my referring clinic is required to fax to them.  Instead I am interrogated with rapid-fire questions, in a patronizing tone.  If they had read the records, they wouldn’t have to ask me the questions, and we would have time to discuss the most important part of a visit to any doctor: what type of treatment is truly best for the patient?  I am sure these specialists are brilliant, and with limited amounts of time in their work days they have to make quick decisions based on what information they gather from patients.  I probably don’t help with my rambling history of odd symptoms intermingled with home remedies and Native American medicines.  But damn it!  They are supposed to be highly educated professionals with vast stores of knowledge about various types of treatment.  Why are they so single-minded about ramming more pills down my throat?  And when did practicing medicine medicine come to include treating patients, and potential patients, like children, or worse yet, like criminals who have to prove their validity before receiving care?

Maybe I am wasting their time with my herbal supplements and quackery treatments. But it’s my body.  I don’t think it’s unreasonable to want better quality than the living death sentence my very first neurologist prescribed, something to the effect of “take these pills every day  for the rest of your life and pray for early menopause to ease the pain of your migraines”.  The nerve!   Certainly that can’t be the best option, for anyone.  If the care I am receiving here is so laughable, there is at least one thing that I have taken from my experience, and I do consider it a blessing.  I, and only I, am completely and unequivocally responsible for my health.  Doctors don’t know everything.  Medical professionals can and will do their best (I hope) for me, but it is ultimately up to me to take care of myself.  I can make decisions about my body and my health, because sometimes there will be no one else willing to take the steps to ensure my health.  If it takes being a medical misfit, then so be it.

I am my own best doctor, nurse, and patient!

— G

Mirena Detox: Days 4 Through… I Lost Track

 

Dr. Schreiber of San Augustine giving a typhoi...

“At least I don’t have typhoid — yet.”  Dr. Schreiber of San Augustine giving a typhoid innoculation at a rural school, San Augustine County, Texas.Transfer from U.S. Office of War Information, 1944. (Photo credit: Wikipedia)

The first three days of my detox “diet” went well enough, but on Day 4 I managed to contract severe gastroenteritis, or stomach flu, which demanded all my time and attention through Day 11.  I wasn’t able to eat real food, much less do a body flushing detox.  Hell, I was barely able to get any liquids down for most of those days!  Apparently stomach flu is going around along with bronchitis, which I also now have. Great way to start the summer!  So I don’t really know what detox day this is supposed to be.  I consulted with my nutritionist and he encouraged me to get back on the detox horse, but half strength, until I feel fully recovered enough to go full throttle.

I visited my regular physician (again) because I had to get a doctor’s note to go back to work.  I was pretty cranky about having to drive an hour out of my way for permission to go back to work (and, more likely, proof that I was actually sick) when all I really needed was some rest and Pedialyte.  Ah, the bureaucracy of being employed!  I explained to my physician as much, and we had a good laugh.  He was interested to find out how my detox helps in treating and preventing future migraines, so I promised to keep in touch.  If I have to go back in for my bronchitis, it may be some kind of record.  I have visited this guy about five times in as many weeks!

Since I don’t have day to day notes on my detox, I can share a few noticeable changes.  While I am considerably weaker from being sick, I do feel better just from the initial few days of detoxing.  I am not trying to lose weight, but have lost about five pounds.  My hormones seem to be stabilizing and I’m not nearly as, well let’s just say it, bitchy as I was a couple of weeks ago.  My head is clearer, with sharper focus.  One notable disappointment is that I still feel as though I have no energy, even after a great night of sleep.  However, I am hopeful that with the return of my strength, my energy will also return.

The only changes made: starting the detox (clean food based, no chemicals or drugs) and stopping most if not all consumption of OTC drugs for my migraines.  I do still take daily prescriptions and vitamins, but nothing else if at all possible.  While I am not yet ready to sing the praises of this detox program, it would appear that using food to heal my body is beginning to work.  Hopefully I can get back on track with better notes in the weeks to come.  I am supposed to be doing a 21 day detox after all!

—G

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Mirena Detox: Days 1 – 4

Whether or not this ends up helping anyone else going through the same nightmare known as the Mirena Crash, I wanted to document my detoxing experience.  If nothing else, it should prove highly entertaining.

Day 0

Starting weight is 156.  My nutritionist  advised me to stop eating corn and any foods containing corn, because it is a sneaky migraine trigger.  He suspects that I have a corn sensitivity.  He also encouraged me to start eating as much cabbage as I can stand, since that is a ‘known’ treatment for migraines.  Huh, I didn’t know that.  Bye bye cornbread I love so much; hello cabbage in my salad.

 

Ross The Dog photo bombing my attempted close up of my smoothie powder.

Ross The Dog photo bombing an attempted close up of my smoothie powder.

Day 1

The Smoothies taste terrible, but between them and the dozens of highly concentrated food based pills, I feel full.  I lost about 5 pounds of water weight, cried all day, and was terribly cranky.  I wasn’t very nice to my children, but to be fair, they were kind of acting like assholes too.  We had to get groceries at the commissary.  It was a death march up and down each aisle, and I required a long nap after all the food was “put away”.  Some of the non-perishables are still on the kitchen floor.  I don’t care.  Although the detox specifies that protein shouldn’t be consumed, I could not make it past 10:00 a.m. without withdrawal hysteria.  I also realized by late afternoon that I’d neglected to consume enough calories to support a shih tzu puppy, much less a medium-sized human.  Oops!  It is hard to keep eating when those pills make me feel so full.  I will have to try harder tomorrow.

Ending weight 151

 

Day 2

I still struggled to eat enough calories.  Fighting a nasty head cold and especially cranky, I cried while making coffee, while fixing lunch, and while angrily cleaning my house.  I say angrily because while cleaning, I was stewing over my husband’s ‘insensitivity’.  The bastard didn’t even have the decency to call me last night and check up on his poor, sick wife.  Who ACTS that way?!  He was probably bar hopping with his brother all over the California coast, not giving me a second thought.  About twenty minutes later I felt guilty for thinking such mean thoughts about him, because he probably will bring back all sorts of gifts from California and present them as a gesture of his undying love and support.  Probably?  He BETTER.  Another twenty minutes passed and I was crying into my green tea while panicking over my phone logs, which indicated that it was I who had to call him two nights ago, PROVING that he didn’t care about my illness or my crazed hormonal state at all.  Ah Ha!  Is it any wonder he has been avoiding me?

And, hot flashes, cold flashes, sob, sob, sob.  My husband did call (and apologized for not calling the night before) and I was mildly icy to him, then I cried after we got off the phone because I miss him.  And, hot flashes, cold flashes, sob, sob, sob.

Ending weight 149

Day 3

The girls goofing around in the exam room during another visit to see my physician about my headaches and illness.

The girls goofing around in the exam room during another visit to see my physician about my headaches and illness.

My weight is 149 again today, so I think I leveled off a bit after the initial toxin dump.  I feel tremendously better today.  In fact, I feel so much better that I harbor a feeling of goodwill towards the general public — a huge change!  I don’t feel like crying, I don’t have hot or cold flashes, and my stomach doesn’t hurt. Hey, neither does my head (aside from a mild protein withdrawal headache)!  I feel…like myself for the first time in months!  And do you know what I want to do, folks?  Change the batteries in my weather radio and do a supply inventory in the tornado shelter.  It’s that time of year!  Yep, I am starting to feel much better.  The girls went with me to another follow-up for my migraines, and I got a referral to see an endocrinologist.  My physician is interested in the results of the detox and asked me to keep him posted.

Day 4

Sick, sick as a dog!  I have some kind of virus running rampant through my body.  I had to halt the detox for a day of chills, thrills, and frequent visits to the porcelain throne.  It was uneventful other than a very sweet card made by my youngest child, wishing me speedy recovery.  My ending weight is 148, mostly from dehydration and lack of food.  I can’t even think about food right now, much less the detox…maybe tomorrow.

—G

 

A Get Well card from my daughter -- so sweet!

A Get Well card from my daughter — so sweet!

 

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My Mirena Tried to Kill Me!

English: Mirena IntraUterine System Deutsch: M...

English: Mirena IntraUterine System Deutsch: Mirena Hormonspirale (Photo credit: Wikipedia)

Okay, apology disclaimer right off the bat for any reader — but especially to any males who may have stumbled across this post innocently.  Unless you really want to read about the horrors that I have endured because of an intrauterine contraceptive device that was eh, installed for medicinal purposes, then you may prefer to read something more benign from a happier time in my blogging days.

There is currently a class action lawsuit because the Mirena is a defective and extremely dangerous product.  The company that developed and marketed it allegedly did so knowing that the device would likely cause numerous side effects, many of which that would be detrimental, some that could be fatal.  If you  are using or have used a Mirena, then you very likely have experienced the same ‘illness’ that I am going through.

Now like most women, I trusted my healthcare professional, who probably had every good intentions.  My reason for getting the Mirena was not to prevent pregnancy but to “control my hormones” so that  my migraines would be kept in check for up to five years (since the IUD had to be taken out after five years’ time).  And like most women, for five years I really didn’t think about my IUD because it didn’t seem to be doing anything.  I wasn’t having very many periods, and when I did, they were lighter, less annoying, and more convenient.  Who wouldn’t want that?

20140317_155222

Me during one of my MANY visits to the doctor during my hellish Mirena Crash. It’s blurry, but that’s how I feel. Taken By Annie

I started to feel like something was wrong about six months ago, and although I wasn’t sure, I suspected that my hormones were to blame.  We women usually know, right?  I could feel that something was wrong and started to wonder if the Mirena was causing hormonal fluctuations.   Four months from my five-year removal date, I was climbing the walls with uncontrollable migraines and excruciating hormonal mood swings.  By that time I was certain that the Mirena had something to do with my very severe decline in health.  The VA clinic didn’t take me seriously when I called and requested an appointment to have the device removed, which destroyed my already shaky trust in the staff.  Luckily, my physician on the Army base saw me immediately and removed the device as an in-house procedure without giving me any grief.  You see why I left these details out of my previous posts about my migraines?  Too much information, and very traumatic!

I thought my problems were over and that I would start to feel much better in no time.  But I became more sick than I had ever felt in my entire life.   Oh yes, the Mirena Crash!  It is well documented and even has its own special name.  I started doing research online, and the more I discovered about the negative side effects of the device, the more betrayed and  I felt.  My Mirena had caused much more damage than initially realized!  The list of possible offenses to my body went on and on, everything from pseudo-hemorrhaging during periods, to anemia from blood loss, to early menopause, to depression, to liver failure, to various types of cancer.  The list went on, and if that wasn’t bad enough, apparently the Mirena had also leached silicone into my body, essentially poisoning me slowly over time.  SILICONE POISONING.  Are you fucking kidding me?

Angry doesn’t begin to describe my feelings.  At the time I made this unsettling discovery,  I didn’t have anyone to talk to because my healthcare providers either weren’t educated or just plain weren’t sympathetic to what was happening.  My husband has been out of town for several weeks — the worst part of this living hell — and in retrospect that may have been a blessing in disguise — for his safety.  With out of control hormones, I was definitely in a vulnerable state, just hanging on from day-to-day.  I would cry myself to sleep, begging God to make the headaches stop, just for one day, so that I could have some relief.  Then in the morning I would wake up with a worse headache, and cry again while making tea.  I could feel my body shutting down more each day, and it was terrifying.

I still don’t know if this story has a happy ending.  Luckily, through what I can only call Divine Providence combined with my Web surfing abilities (Divine Surfidence?), I found out that there is a nutritionist specializing in treating survivors of the Mirena Crash (the official name given to the specific yet numerous symptoms associated with use of the device) in Great Bend, Kansas, which is really just a two-hour drive from where I live.  I almost couldn’t believe it — maybe this is the real reason we have lived in Kansas all along!  I had been begging God to stop the pain for weeks now, so I took this as an omen that I MUST get in touch with the doctor, who is by happenstance a nutritionist and chiropractor.

Okay, so to wrap up this story, I will skip over our long phone conversation because it turns out I didn’t have to even drive the Great Bend.  He does phone consultations with women from all over the country who are suffering from the side effects of their Mirena IUDs, and are not getting adequate support from healthcare providers.  Hmmm.  Long story short, he recommended a whole foods based detox diet selected  by him, and tweaked over the years to heal the body as much as possible.  The detox is designed to flush five years of toxins out of my body and liver, and hopefully get the liver functioning at full capacity again.  The silicone may or may not flush out.  I am also going to be using a bio identical progesterone oil to ‘reactivate’ my natural progesterone since the Mirena stopped production of my natural hormone.  This should halt the pre-menopausal symptoms I am experiencing (hello, hot flashes!) and hopefully turn back the aging process (I already have a lot of gray hairs!).

It could take months or even years to undo the damage caused by the Mirena.  Right now I am looking at my entire summer as a recovery time, and I may not be able to go back to work at the school.  I am immensely saddened by this turn of events.  Summer was supposed to be fun time with my family, everyone happy while traveling and having adventures.  I am no longer the wife or mother I was six months ago, and it isn’t fair to my family.  I am very angry that a tiny device could make me so sick, and that in five years, NO ONE in my medical community raised a red flag about it.  It goes to show that you and only you must be diligent about your health, because doctors don’t know everything, and pharmaceutical companies don’t want to make you feel better.

On the bright side, today I started my detox.  I took my pills (all food based, no chemicals or toxins) and made my smoothie with the special food powder blend.  It tasted disgusting!  I like my homemade smoothies better, but it is important to follow the plan.  I have to do something, be proactive.  This is the way to get it done.  I feel optimistic knowing that I am using food to heal my body.   And maybe soon I will be who I  used to be.

— G

 

 

Another blogger whose life was affected substantially by Mirena, and who refers to the same nutritionist from Great Bend in her posts:

http://mylifeaftermirena.blogspot.com/

 

Another survivor of the Mirena:

http://mirenaandra.blogspot.com/2013/03/mirena-iud-is-poisonous-hashimoto.html

 

 

 

 

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