Friday, March 22, 2013

Please Help My Dear Friend Get Teeth

I have a friend who is very ill with several, chronic, lifelong conditions. Her name is Dee, but she goes by "Line" on Facebook. She has Fibromyalgia, Crohn's, Arthritis, and lives with pain of many kinds on a daily basis. She has had to get her colon removed since I've known her, and with the infection and problems that occurred during all that, she has really been through hell. When I am in pain of any kind, I think of her as inspiration to go on. Her family has been dealing with their own health problems as well.

On top of all of these health problems, she's losing her teeth and cannot afford to get them fixed. Her insurance plan covers very little of the huge expense of the cost to fix her mouth so she can eat solid food again.

I can personally vouch for her. She is a very kind and beautiful person, and she absolutely hates to ask for help. Nobody likes to ask, but she is always giving of whatever she can to support others emotionally and has not asked for anything until now.

This is her last chance to fix her teeth so she can at least eat and get some nutrition into her body. If you have any way to contribute, even a small amount, please know that it is for a very good cause and will be used to restore her mouth to be able to eat solid food. It's a long way to the goal, but any small bit helps.

Also, please share this link freely as you can, to help spread the word.

Thank you!

Sunday, March 3, 2013

FMS and the Mirena IUD

WARNING: This post is about birth control.  There is a lot of detail here that you may or may not be interested in reading.  I wanted to post the details of my experience, in case they help other women out there who are also interested in the Mirena IUD, especially those with fibromyalgia.   No companies sponsor my posts or pay me for anything I say, so you can trust my opinions to be true and objective.  I know some bloggers earn a living from their ads and sponsors, which is fine, but I do not.  I kinda hate that, so I only link to or endorse whatever I like and trust to be good.  You're welcome.

When my blood pressure was not dropping to normal after many months off of Savella, my gynecologist ordered me off Seasonique because the estrogen in it could be contributing to the high blood pressure.  So, I quit taking last October and thought about alternative birth control methods.  At the doctor's suggestion, I did some research and eventually decided to go with the Mirena IUD.  It contains hormones, but not estrogen.  I found out my insurance plan covered the cost, save for a $25 co-pay, which is lots less expensive than the pills which are not covered at all under my insurance plan, for some reason.

There are few key things to know about Mirena, if you are interested.
  1. It's an IUD with hormones, but it does not contain estrogen.
  2. The IUD is inserted by a doctor in the office, as a quick, outpatient procedure.
  3. Getting an IUD inserted is easier for the patient during her period (days 1-7), but can be placed at other times, if necessary.
  4. Many women on Mirena have fewer, lighter, or shorter periods, and for many women, periods stop altogether.  (I've got my fingers crossed for the last one!)
  5. Getting an IUD placed is easier for women who have given vaginal birth to 1 or more children (or any other cervix-dilating procedure such as D&C, abortion, etc.).
  6. Once placed, Mirena is effective for 5 years of birth control, and it is highly effective (almost 100%).
  7. Most women have no side effects, but some women do have some side effects.
  8. Maintenance after placement consists of a follow-up visit with ultrasound to confirm proper placement after the first month, then checking the strings monthly, and getting regular doctor check-ups yearly.
This is what I learned online and from the product literature.  I also visited groups and forums where women described their various experiences with Mirena.  While writing this post, I even found an entire blog about one woman's experience with Mirena. Here's another blog with lots of terrible stories from various Mirena users.

It seemed that many women loved it and some even had a second one inserted after 5 years on the first one.  But others hated it because they got a lot of side effects, like weight gain, mood disorders, etc.  They were very, very angry and wanted nobody else to experience what they had.  Although, while reading some of the detailed negative posts, I suspected at least some of the unlucky women had other issues that may have contributed to their symptoms or perhaps they should have mentioned to their doctors before deciding to go on Mirena.  (Think about it.  If a mom of 2 young kids is getting Mirena because she is terribly afraid of getting pregnant again, and she's mentioning her husband being unhelpful in her rant, she's stressed already, with or without Mirena.)  I think they had untreated or undiagnosed conditions that did not manifest until they went on Mirena, because many of them did not seem to have been on any hormonal treatment before Mirena.

I liked the benefits and low cost of Mirena, but knew that there was a possibility that I might have some horrific side effects myself, since I seem to be sensitive to many medications, and because I have this damned Fibromyalgia.  However, since I'd been on one hormonal birth control treatment or another for at least 10 years now, I was willing to find out, rather than wonder about it for the rest of my life.  If it doesn't work out, I could always have it removed and switch to a non-estrogen pill or other method.

So, my first challenge was to wait for a period.  As I mentioned, I have not been off birth control pills for a very long time, but I do remember not having regular ones.  They tended to be occur at anywhere from 5 to 7 to even 9 weeks between periods, and they were always kind of miserable, which is why reducing and predicting them with Seasonique worked so well for me all these years.  So, in October, after the initial period that came with stopping Seasonique, I switched to the estrogen-free Jolivette "mini-pill", not realizing until a month later, that there were no "dummy" pills for the period in these packs.  They are meant to be taken continuously with periods that may or may not happen, and if they do, with no real predictability.  For me, nothing happened.  (Doctor, why didn't you mention this when you prescribed it?)

By Thanksgiving, I had already decided on and ordered Mirena and it was shipped to my doctor's office, waiting for my period to arrive so I could schedule the insertion.  I realized after no period came that I would be waiting a long time if I stayed on Jolivette, so I quit that and switched to condoms.  It was a little inconvenient but I wanted to get going on the Mirena project already.

So then it was nothing all month until late evening on Christmas Eve, the floodgates opened and the period was on.  However, timing was absolutely terrible for getting Mirena.  The next day was a holiday, and the rest of the week, I had travel plans.  I had to wait another month or so for the next opportunity.  Everything I'd read was about getting the thing inserted during the period, especially for someone like me with no babies or anything dilating my cervix.  So, I waited.

You know how a watched pot never boils?  When you actually wait for your period, it's an agonizingly long wait.  All of January came and went without much more than a spot or two.  On February 5th, I had a bit more spotting than usual and called the doctor's office, indicating that I'm not sure what's going on, or if this is it or not, but wanted to make an appointment while something was happening.  Luckily, a mere few minutes after making a Thursday appointment for Mirena insertion, the floodgates opened again and confirmed the period had arrived. 

The nurse told me it would be a quick, 10-minute procedure to get the IUD installed, and that I'd be fine to go to work afterwards.  Nothing to it.  Easy-peazy.  I scheduled a half-day with the morning off work.  I remember being told to take a pain medication (I took Aleve) before the appointment.  Then she mentioned it would be done by a different doctor from the one I see.  I figured my doctor wasn't available, so, no big deal.  I was all set for Thursday morning and excited to finally have this ordeal taken care of and behind me.  I was eager to find out if this solution would work for me.

When my appointment finally arrived, I met the new doctor (new to me), he assured me that he'd been installing IUDs for 30 years now, and that he would take good care of me.  He was friendly and courteous, and the nurse was also very nice and helpful.  I still missed my own doctor (because she knows me and I know her), but I figured this should not be too big a deal.  Maybe she's not so experienced with these things.  I'm probably better off, I reasoned.

So, the doctor explained all the details, showed me the product, and we got started.  He warned me when things would feel uncomfortable or crampy, just like my regular doctor.  He said he had to first measure the uterus, which would feel crampy, then the insertion was to feel crampy again.  Then a snip of the strings and I'd be all done.  It sounded a lot like the yearly check-ups with my regular gynecologist.  I was not at all ready for the level of pain that I experienced.

The crampy feeling from this was a thousand times more intense than I'm used to feeling during yearly exams.  Why did nobody online warn me of this terribly painful experience?  Maybe it wasn't this bad for most people?  Maybe I didn't read all the right posts.  I do have Fibromyalgia, which can amplify even non-painful pressure as awful pains.

I was embarrassed to be unable to prevent my yelling "ow" during the procedure.  I noticed also that my face felt really hot all of a sudden.  Then I felt weird and a wave of cold sweat came on.  I described it to my doctor, in case he needed to know.  He knew what it was and didn't seem too surprised, but he and the nurse both seemed concerned, despite my joking a bit to let them know that I'm not a big baby.  I knew there'd be discomfort, and I assumed it was just a temporary problem that I'd get over, which helped me keep my spirits up.  They gave me some juice to sip to feel a little better and were very nice to me.

The doctor felt bad about the pain and apologized for making me hurt.  I knew he didn't mean to.  He explained that I had a vasovagal response, which "some women" get during this kind of procedure.  I had never heard of this term before, but they explained and it seemed reasonable.  I'd look it up once I was out of there, I decided.  The nurse and the doctor were both very repeatedly clear about letting me know that I could lie there as long as I needed to before getting dressed, since the room would not be needed for many hours.  I asked the nurse why everyone was so concerned about me and asked if they thought I would faint or something.  She said yes.  I was also very pale, apparently, so I guess all the blood wanted to leave my head, which could lead to a fainting spell.  I told her I'd never fainted, so maybe that helped me this time.

I sipped on my juice and tried to relax for a bit, alone in the room, but I didn't feel comfortable lying on the table half-naked for so long.  So I slowly got up and got dressed, but felt very crampy, so I still needed to sit for a while.  Then I was in a hurry to leave because I suddenly felt the need to use the bathroom, so I checked out and spent some time in the rest room.  I was supposed to get to work for the afternoon, but as I slowly made my way to my car, I realized it wasn't worth it to work in this much distracting pain.  I headed home instead and notified my boss that I couldn't come in after all.  I did not want to move at all for the rest of the day and the next.  (I had to call in sick again the next day, Friday.)  I parked on the couch with a heating pad on my belly, just enduring the constant cramping and trying to think about the future, when the pain would be gone.  By Saturday, I finally felt better.

Since then, I have not had much of a problem with Mirena.  Cramping has been minimal and intermittent after that, but mostly non-existent.  Spotting is minimal.  The strings seem to be okay and not interfering with anything.  I checked for them and was relieved to find that they are thin, short, and tucked away into a corner near the cervix, where they do not cause any discomfort for me or my husband.  I have developed some strange outbreak of acne around the back of my neck and scalp, but it started back when I had quite Seasinique and was not yet on Mirena.  I am hoping that will clear up after the hormonal stuff settles in for the long haul.  I worried more about it when I didn't make the connection to the hormones.

My one-month check-up with ultrasound is scheduled for 3/11/13, and I suspect everything will go fine.  So far, the worst of it was the day of insertion and the day after.  I'm glad for that and hoping the good news will continue.

On a side note, I've been dealing with a lot of long-forgotten Fibromyalgia symptoms lately, which seemed strange, since I'd been doing so well since taking better care of my body with a healthier diet and more exercise.  I didn't put this together until just recently, but I suspect the painful insertion, vasovagal response or/and the lack of activity for those crampy two days may have triggered a fibro flare.  In the past few weeks, I was having severe pains and couldn't figure out why they were lingering for days after doing so much better with my Fibromyalgia symptoms.

All in all, I think Mirena is working well for me, after paying the higher "Fibro cost" of all the insertion pain and fibro flare up symptoms.  I'm hoping that in 5 years, I'll be ready to face the challenge a little better by expecting to cramp up for a couple days and deal with a fibro flare for a few weeks afterwards.  It's nice not to have to worry about condoms or pills, though, to be honest, I didn't really mind taking pills so much.  What I did mind was the outrageous cost of the pills.  Since my insurance is pretty much covering the entire cost of Mirena, I'm happy to have this option.