Ĉu Vi Parolas Esperanton?

I've been learning a new language for the past year or so now! It's called Esperanto and anyone can learn it for FREE now, by using DuoLingo.


The story of why DuoLingo offers a multitude of language lessons for free is very interesting, and is explained in this fascinating TED talk about captchas. Regardless of the goal of the overall project, millions of people are learning languages for free and they get to keep that knowledge forever and do with it what they please. Don and I are two of those people and we have decided to learn Esperanto.

Esperanto is a constructed language, created by a Polish Jew named L.L. Zamenhof. His vision was to create an easy to learn language that could unite the world by serving as the ultimate international language of the world. Until now, only a relatively few people had access to learning anything about this language, much less even heard of it. It's fun to learn and the community is very friendly as well.

We are now nearing the completion of the DuoLingo "tree" of lessons and can have beginner conversations using the language. We practice a little every day online and with each other and it's going very well.

In my enthusiasm for my new culture, I've created a few Zazzle product designs to help celebrate Esperanto and offer a unique way to discover other Esperantists or start conversations and gain interest in this great language, which is growing in popularity by the day. Please take a look and feel free to share and buy my designs so I can make a few pennies here and there. I hope to create more designs in the future.

Take a look at the DuoLingo site and sign up to learn Esperanto or any other language. There are many, many options available, and developers are working on more options all the time, so keep checking back if the one you want isn't available just yet.

Ĝis la revido, amikoj!

Abandoned Fibro Blogs

I just unsubscribed from over a dozen blogs written by fibromyalgia sufferers about their lives with fibromyalgia. All of them have not published a post in over a thousand days. Nothing. Where did they all go?

Several years back, around the time of the great Facebook revolution, I did a brief stint on Twitter. While there, I found a group of fellow fibromites and some of them had blogs. We subscribed to each other's blogs and created our own, (myself included,) exchanging stories and insights about our many challenges. We wrote frequently back then, as there was a lot we had to say.

Maybe it's all been said now. I feel like I'm caught up on all the nuances of this fibro life, yet I still look for news and different perspectives here and there. Once in a great while, I share my own.

This has become clear recently while reviewing my Facebook Memories from years past. I used to post about my pains and health challenges, and sometimes my health victories. Now, I feel I don't want to bore or annoy my Facebook friends with the tedium of my particular collection of health problems. They may not understand what it's like to live like this, but maybe they don't need to.

I have learned that most everyone has their own set of problems. Would I want to read about them all? Wouldn't I start to see certain people as their most frequent complaints? This is not how I want people to see me. I am a person with interests and convictions. I look for opportunities to be more interesting. I am trying to live life.

Hopefully the lost fibro bloggers are all out living their lives and trying not to wallow in their pain. Although I know blogging is a good outlet for dealing with the struggles of living with an invisible illness, I know it can have the unfortunate consequence of limiting one's ability to move beyond that focus.

Today, my advice is to try to forget the bad and focus on the good, the positive. What can you do? What can you enjoy. Be a whole person.

Painful Foot Update: Peroneal Tendonitis

So, last Friday, I went to a new foot doctor about the pain and swelling around my outer right ankle bone.  The whole staff was very nice.  The doctor pressed on various areas of my bare foot and asked if it was painful.  He found the worst spot (toward the back heel side of the bony area) and suspected an inflamed tendon.

I had my foot x-rayed to rule out any bone or other problems - all clear there.  With my past history of having this same problem a few months back, and since it went away with just some icing and rest, he says we can assume this is peroneal tendonitis.  If it gets better in a few days with the ice, Aleve, rest, etc. that would support the diagnosis.  However, if it gets worse or does not subside, we can do more detailed testing like MRI to see if anything has torn.

An ankle brace was recommended to help support the foot and reduce further inflammation while walking around, so I went and got one after my appointment.

I was also told my arches were slightly flat, and that my foot posture turning downward on the inner sides of my feet was possibly contributing to my tendonitis.  The doctor recommended getting some good shoe inserts with sturdy arch support. So I got a pair of these as well.  Since I had some cheap inserts in my boots already, he looked at them and added some felt to the bottom of the arch area, to beef up the support a bit.  I thought that was nice.

I also got a great printout of strengthening exercises to do to help prevent further injury to my feet, and have been giving those a try each day.  I'm backing off the daily stairs climbing at work until I feel better, and the yoga and other activities are mostly on hiatus, too, to I can rest the bad foot.  I did do some yoga poses today, though.  I just made sure I didn't use my feet for support and took extra care to look for any signs of pain in that bad ankle.

So, here I am, several days later with my foot feeling a lot better, but not quite back to normal yet.  I am still wearing the ankle brace but I have put the cane away and have just been stepping slowly and carefully at work and at home.

I'm a bit cranky otherwise, though, because other symptoms have been acting up.  I fear that the Aleve I was told to take (always with meals, mind you) for the inflammation was irritating my stomach, so I stopped taking it.  I had some gastritis a while back and don't know if that is still with me, or if it's just more IBS or something else.  I have been dealing with some sharp, stabbing pains in my ribs and back the past couple of days, and my eyes feel like I've been awake too long, though I did manage to sleep.  Then yesterday, out of nowhere, tinnitus in my left ear just started raging with this loud, muffling ringing for hours.  On top of all of these symptoms, like the cherry on top, is all the mental garbage that tags along: my difficulty with focus and memory, plus the stress of dealing with all this crap while trying to live and manage and keep my job.  I declare a flare.  And I am just trying to remember that there is hope at the other end of this particular nightmare.  I just don't know when exactly that will be.

Painful Foot and Burning Hands

I feel a bit like a dog with a hurt hind leg these days.  You know how they will lift the painful foot up and only hop lightly with it, if necessary?  It's this darn pain in my right foot/ankle area again.

As much as I hate using the cane that I keep in my car, (and getting the old "what happened?" or the exaggerated sad and concerned face from well-meaning coworkers,) I broke down and started using it a couple days ago.  I took about 6 steps away from my car in the parking lot at work last Tuesday when I realized I should be using that cane.  Stubborn me, though, I didn't turn back to get it.  I soldiered on through the morning and grabbed it at lunchtime.

Tomorrow morning, I will see a podiatrist to see what the problem is.  I'm hoping to at least find out what I might have done to aggravate this condition, so I can at least stop doing that.  Thus far, I have noticed that the pain subsides with rest, and gets worse with stairs, (both up and down,) or walking for more than about a minute.  Today I noticed further that it's when I place the heel down that is painful, and I've caught myself kind of toe-stepping slowly on my right foot, and relying on the cane for support.

The cane also slows me down so I can step more carefully.  It also helps tell others that I won't be able to scurry up to catch that opened door, or run across a walk before that car comes.  The cane is growing on me, but I still hate having one hand occupied while I'm moving.  It's also a bit of a bother in the bathroom.  I have a new appreciation for anyone who needs to use walking aids full time.

Anyway, I hope to know more about this foot tomorrow.

On a side note, I've been noticing an odd new symptom has popped up in the past few weeks.  Every now and then, my hands turn really red and hot and start burning painfully.  The burning makes me look at them.  It looks ridiculous.  One time, just my thumbs and index fingers were red-hot, but the pinkies were cold.  My husband was around so I showed him.  It is bizarre.  I also notice coldness in my toes, inside my shoes/slippers when my fingers and hands get cool.

I'm one of those people who is usually cold, especially my hands and feet and especially around bedtime.  I get those "icicle feet".  Luckly, Don is usually too warm so he lets me warm up my tootsies on his warm feet and we find some kind of equilibrium.  As a child, I remember getting hands so cold I had to stop practicing piano.  My mom knows.  She would always say "cold hands, warm heart" to make me feel better.

My first thought about the temperature weirdness is Raynaud's, which is common among fibromites. Cold really does hurt my hands.  For example, peeling a cold cucumber requires breaks where I put down the cold cucumber and blow on my hands to warm them up again.  Again, ridiculous.  When I come in from a walk in cold weather, my thighs are numb and as I begin to warm back up inside, they twitch all over.  Does this happen to you?  The thing is, I've never recalled any real white or blue discoloration of my fingers, as with the classic Raynaud's.  I know it's not the same for every patient, but I just notice that.  I just get the red, hot hands.  I don't know if my feet get that way, though, other than when the pressure hives are raging on the bottoms of my feet.

Today I came across a rare condition with the burning red extremities.  I hate to speculate, but I cannot help but wonder about it.  It's called Erythromlalgia and here is the page with the interesting photos: http://www.erythromelalgia.org/WhatisEM.aspx

I will definitely need to note these new symptoms for my next rheumatologist appointment.  I just saw her last month, but if things get ridiculous, I may try to see her sooner than my next appointment in August.

Do you know anything about this?  Got any tips or links that might help me?

Tell the FDA What You Need

A while back, I posted a comment to this article asking fibromites to share our experiences with Fibromyalgia with the FDA, in preparation for their upcoming four-hour discussion on December 10, 2013, in Maryland:  http://americannewsreport.com/nationalpainreport/fda-seeking-public-comments-fibromyalgia-8821990.html

After I commented I was contacted by the editor, Pat Anson, via email, asking me for more detail on my experience with Cyclobenzaprine, for another, related story.  That article was just published yesterday: http://americannewsreport.com/nationalpainreport/fibromyalgia-patients-take-drug-label-help-sleep-8822476.html

Please feel free to comment on either or both of these articles with your own experience with Fibromyalgia and treatments that may or may not have helped you.  The FDA is asking for our input and is ready to listen.  Even if you do not reside in the USA, your experiences are helpful in finding proper treatment.  

Be sure to mention what was most and least effective for you, including any details regarding any side effects, (like weight gain, dryness, mood changes, sleep issues, etc.) which are very important when attempting to treat a very symptom-heavy condition like Fibromyalgia.  Talk about the symptoms and side effects that are most bothersome and those that you find to be tolerable.  Include your thoughts on any supplements or herbal treatments you may have taken.  Share what you can.  This is your chance to be heard and inspire the focus for future Fibromyalgia treatments.

When Temps Drop, My Pain Rises

We had our first snowfall of the season yesterday.  To me, that's the official beginning of the winter... and the beginning of my yearly flare up.

For the longest time, I noticed that I had a problem regulating my temperatures.  As a child, I would frequently have to stop practicing piano because my fingers just got too painfully cold to continue.  When home computers came around, I noticed a similar issue with my mousing hand.  My mom used to tell me "cold hands, warm heart" whenever she found my hands so cold for no good reason.

These days, I notice I can't seem to escape cold temperatures, even in the summer.  There's always plenty of folks turning the A/C down because they are sweating in the office or wherever I seem to go - even at home.  I frequently bring an extra sweater or layer of clothing if I am going anywhere there is bound to be air conditioning.  Just this last summer, I remember having to have a building worker close the damper that was blowing cool air directly onto my hands at work - twice.  Most people didn't know what I was bitching about, because they prefer cooler temperatures.  For me, I had to fight to keep my hands warm while still getting my work done.  The stiffness would sneak up on me while concentrating on my job, and then the distracting pain would trigger a host of other unpleasant symptoms.  I seriously don't know how I'm able to keep a job with what I brave every day.

I don't think anyone can truly grasp just how difficult my personal challenges are.  I keep doing my best and I don't know how to feel about this, but people forget I have any kind of illness at all.  You'd think everyone would be able to understand at least pain.  Everyone has had pain of some kind at one time or another.  Some of my coworkers have painful conditions, too.  Yet they ask me to do things I can't do without making difficult decisions between my own health and my source of income.  Time and time again, I choose income over my health and deal with the consequences later.  I suppose this is part of my problem.  But, anyway, I have digressed.

As I write to you, I'm noticing how very cold my feet are.  It's not unusual for them to be cold.  If they are ever warm by bedtime, my husband jokingly asks me what I did with the real Benia.  Thankfully, he welcomes my icy feet and shares his heat with me, but I still can't seem to escape the pain.  Last night, long after the time I should have been asleep, I was just feeling this chill crawling over my skin.  Just over and over, these washes of shivering cold just kept me far from comfortable, and unable to rest.  I was balled up under 3 layers of bedding that seemed like flimsy doily as far as I'm concerned.  I would love to add 2 more thick quilts on top of me for bed.  I shivered and shivered last night, getting little sleep and dealing with new, stabbing pains in my back and head.  Eventually, I got up and braved the short walk to take some pain medication.  By morning, I was in no shape to get up and go to work.

I am about to take a warm shower to try and warm up for a bit, and I will use my heating pad to help keep me warm afterwards.  In the meantime, I want to share this short article that talks about why cold can be so painful.  It also lists several great tips for keeping warm.  I do some, but I will be trying others as well.  It's going to be a long winter for me.  Stay warm!

Move Around and Feel Better

I came across this article today.  It talks about what a huge difference it makes in the body to be sitting for hours on end vs. breaking up the sitting with standing and walking around every 20 minutes or so.  What I read there is right in line with what doctors everywhere have been nagging their patients to do: MOVE!

Yes, I know it hurts.  We are a sensitive bunch and we tire easily.  Believe me, I know! I also know that it's not as easy to do as it is to say, especially in the throes of a pain flare up; however, we must make a daily goal to use our muscles and circulate our blood, regardless of how good or poor our health is.  Fibro or not, movement is necessary!  I don't run any marathons and don't expect to, but I do try to make sure I do some sort of exercise each day, even if I'm hurting a lot.  (Stretching and yoga poses count!)

Below is my exercise log, if you'd like to see what I've been doing as an example.  Go ahead and flip through back to the beginning of the year and before, when I started logging my exercise.  See how far I've come.

I'm not perfect, but I do try, and it's important to try.  Keeping track keeps me motivated and helps me remember how far I've come.  (Note: On days where I ended up being too active to do exercise on purpose, I entered the exhausting activities in parentheses.)  Most days, I start with stretches my doctor gave me to do to help with hip pain/bursitis.  There are five different ones and I usually just pick one per day to quickly do before getting ready for work.  I've just recently decided to try to do two per day, if I can.  We'll see how that goes.  On work days, I also take the stairs half-way up to my floor (it's all I can do before my legs give out) in the morning and after lunch.  Every three days I try to do something more, like walking, yoga, or elliptical machine for at least 5 minutes.  As time goes by, I hope to make that minimum a little higher.  Again, baby steps...

Join the movement!  Don't shoot for the moon today, but do try to get some movement into your day and start as cautiously as you need to.

Weird Myofascial Knots, Flare-Up

Last week and even the week before, I had some very strange knots that appeared in my upper, right shoulder blade/back area.  They seemed to have spread havoc to many other areas, including my head, neck, back, and hips.  There were a few days of forced rest starting last week Sunday.  I am not sure what triggered this.  I seemed to have been doing great for many months now, mostly, until the Mirena installation in February.  Then I had a painful mammogram done in March that probably didn't help matters.  It seems a bit far-fetched that these two, painful but quick procedures could have ruined such a great run, but with Fibro, you can never tell what might lead to a flare-up.  Perhaps the weather and some other factors may have combined into a perfect storm or something.  I do still strive to eat more produce and choose healthy foods more often than indulgences.

Anyway, I've been using my TheraCane massager a lot, which seems to help ease the knots and referring pains a bit.  I also did some yoga at home to see if it would help, since it usually helped a lot when I went to yoga class with pains.  I had to take a couple of days off unpaid to rest last week, but I'm sure not driving and having to think about work was the right thing to do.  I'm due for my biweekly massage tomorrow.  Last time, there we so many awful lumps and knots along the right side of my back, I couldn't believe it, but it did explain all the pain and problems I'd been experiencing lately.

Oddly, I think the fibro fog is still affecting me, since I managed to make two mistakes that added a lot of unnecessary driving/car riding time both yesterday and the day before.  Nothing major, but stupid mistakes nonetheless.  Long car trips are a little tough on me because of the immobility, but I think the stress of the mistake was also contributing a bit to my pains.

I'm still doing my best to keep up the hip stretches, stair climbing, and other activity to help keep my muscles warm, loose, and healthy.  I'm a little frustrated though, that despite my climbing 4 floors of steps every work day, at least once a day, but usually twice a day, since early February is still all I can do at one time.  I expected to be able to progress and do 5 floors after a few weeks, but I still get very fatigued at the third floor, then push myself to do the fourth and final floor, sometimes stopping or going very slowly, just to make it.  I literally feel like I have used up all the energy available in my legs by the time I'm at the fourth floor up.

Another weird thing I notice while climbing stairs is that my mind frequently gets confused and I frequently almost miss a step but luckily hesitate to prevent falls.  Does this happen to other fibromites? I'm hanging onto the rails and going slowly, but every once in a while, it's like a skip or a glitch in my brain and I'm unsure what my foot will do and if I'll land the next step properly.  This is while I'm looking at the stairs because I cannot risk not looking.  I also don't go down on the stairs because my knees buckle too frequently.  I am on the disabled list at work to skip fire drills.  With an entire building of people rushing me, I would surely fall if I tried descending 8 floors of stairs.  On top of that, I can't risk a flare up from the stupid drill.  If my life was in danger, I'm sure I could manage to go down the steps because it would be worth a flare-up to survive, but for drills, I'm not risking a flare.

In other news, I've begun to revise my WRAP and the more I worked on it, the more I've been completely rethinking the structure of it.  When I'm done, I hope to have a simpler, easier to read format, but there is just so much information and detail that I keep getting stuck and making the revisions more sweeping, which is delaying the progress.  I've set a goal to get this done by the end of the year, but I've also set a lot of other goals for this year, so I don't want to arrive in December with a mad, impossible scramble to get things done.  That would be creating stress, and I'm not about that at all.  I do realize I've taken on a lot of goals, but I think it can be done.  If not, I'll have learned something about my abilities and scale things back for next year's goals.

The weather is finally looking more like Spring this weekend.  I hope you're all doing reasonably well and looking forward to some warmer weather.

One last note, if you donated to my friend's dental fund, THANK YOU!  You are wonderful for donating!  Also, if you shared a link to the campaign with your friends or readers, THANK YOU!  You are great to help someone in need.

If you haven't done either of these things, please consider doing one or both.  Do something nice for someone less fortunate.  Doing something nice for someone is therapeutic and can make you feel good.  I do what I can to help you all by sharing details about my life.  This is a great way for you all to pay it forward and feel good about helping my friend Dee (aka "Line") get her teeth fixed so she can eat.  Many chronic conditions, medications, stress, and poverty have caused her teeth to get loose or damaged and she is unable to eat much solid food, which is further hurting her overall health.  She's been through hell and it's not even over if she can get these teeth fixed.

Even a small contribution or even just sharing the link is really very helpful for her cause.  A donation of just one dollar is very much appreciated, and you can remain anonymous if you like.  You can also skip the fund and donate via PayPal if you have an account.  Here is a link to her GoFundMe campaign with all the details.  She's also updated with a few videos that explain her situation a bit.  I would be very grateful if you can show just a little love and do something for my dear friend, Dee.  Although she is very giving, she hates to ask for help, but this is really her last hope.  Please give it some thought and see if you can help her in any way.  Earn some good karma for yourself.  THANK YOU!

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.

Fibro Fog & Language Problems

I recently found this article that discusses fibro fog, specifically language problems.  I found it to be relevant because I am challenged at work by people who prefer face-to-face interactions or phone calls to my emails and texts.

Part of my job involves meaningful discussions with just about anyone else in my company.  Even if they could understand why I rely heavily on written communications, I don't think it's necessary for me to explain it to them all.  But when I hear myself talk in meetings sometimes, I have become painfully aware of how halting and imprecise I sound when I cannot find the appropriate words.  Even worse, it's distracting to me to have others tell me they cannot follow what I am saying.  Then I might lose my train of thought.
 As a compromise, when I need to discuss things with others, I find that starting to draft an email helps me figure out what I want to say, but then I make the phone call instead of emailing.  It doesn't help when unforeseen topics arise, but it's something.  Luckily I'm not easily embarrassed, so I keep pushing myself to be better despite the discomfort. It's a tough world out there sometimes, so I guess it's a good thing that I don't back down from challenges too easily.

Do you have these problems with words?  If so, what do you do to cope?

huh?

Attitude is Everything

I recently visited wonderful rheumatologist, to follow up on my last visit.  Good news! My blood pressure is no longer ridiculously high.  The last time I had it measured was mid-October by my gynecologist, who ordered me off Seasonique because of estrogen contributing to the high blood pressure.  Back then, it was as high as 150/97 (the last and highest of 3 readings in that one visit).  Today, it's down to 125/87 (the second and lower of 2 readings today).  According to the wikipedia page on Blood Pressure, I moved from stage 1 Hypertension to Prehypertension.  I'm just one category away from normal.  Isn't that what we fibromites all strive for?  Normal?  I'm getting there.

My doctor was also very proud of my improvements in overall pain levels and lifestyle changes to be healthier.  I've been eating healthier foods and making sure I get some exercise in at least every couple of days.  I'm keeping up Yoga on Wednesdays and my Whole Foods salad lunch habit.  I've also added elliptical workouts (usually 15 or 30 minutes) and climbing stairs in the building where I work.  (4 floors, up is all I can do right now, but I'm pretty impressed anyway.)

Since my symptoms are mostly under control, she is keeping me on my nightly Cyclobenzaprine (Flexeril) for muscle relaxing and sleep, and leaving the rest up to me to control by living my life as well as I can.  Being on few medications is just the way I like it!

Although, I have been noticing some more heart rhythm issues lately, especially upon waking, and I did not realize until looking up the link just now that this medication warns about that.  I've had atrial tachycardia since I was a teenager, and episodes are usually short, but can last hours, and they can be slight or kind of scary feeling.  I wish I'd known before my last appointment, so I could ask the doctor about it.  I'll have to note that and give her a call to see what she says about it.  Every doctor I've seen about it pretty much shrugs and says some people just have this and they aren't sure why.  One cardiologist offered to fix it with a new heart surgery that would cut the electrical route that triggers the arrhythmia.  I don't feel it's enough of a concern to risk surgery, so I am just kind of dealing with it.

Because I still mentioned that my right hip gets stiff if I sit too long, she also asked me to do several hip stretches every day.  She gave me a printout with instructions for five different ones to do.  I have been adding them to my morning routine already.

Oddly, though, after bragging about how great I've been doing, I had a weird kink in my back, headaches, knee pain, and some minor digestion issues, plus tinnitus and a weird hour-long episode of partial deafness in my right ear.  Did I jinx myself?  At any rate, I think I may just be paying attention to many of the things that were called out during the appointment, and feeling just about average for me lately, if that makes any sense.  I do still deal with FMS and the unpredictable symptoms.  But, I'm not going to worry about it and just assume it's nothing unusual.  I'm on my way to feeling more normal and feeling more in control of my health these days.  YAY!  Attitude is everything!

Wanna jump for joy with me?  Well, if you're not up to it, you can just do a mental happy dance, if you like. 

My Life at Forty

Ahh, life.  What is life?  It's consciousness, the ability to use energy and do things.  It's about choices as well as things that just kinda happen.  Some of my experiences are the results of my choices or the choices of others.  Some things also just happen.  Sometimes it's fun and happy; other times, not so much.

I turned 40 earlier this month.  I never used to care about age or understand why some people lie about their age.  "It's just a number," I would say to people.  30 was no big deal.  I felt fine with being a thirty-year-old.  It was just another birthday, though I do remember having a small party to celebrate it.  I suppose it was an excuse to to have a celebration and enjoy some pizza and cake with people.  Oh, and drinks.  Many, many drinks.  It was a good time.  I eased into adulthood, perhaps happy to leave the immature twenties behind.

In the weeks leading up to my 40th birthday, however, I kind of felt something new.  I kind of kept reflecting upon my age, my health, my death.  Will I live another 40 years?  Is this really the middle of my life?  The past forty years seem to have been short - will the next forty also feel short, or even shorter? 

I'm still not much for lying about age or denying it to myself.  I am facing these thoughts, mostly out loud to my husband, who turned 40 last year.  It's weird how I never anticipated this birthday being much more than some random milestone assigned by society.  I'm starting to get what those "Over the Hill" birthday party favors and gag gifts are about.  It's a way for everyone to acknowledge these feelings, but tempered with some humor.  I suppose celebrating birthdays with people both older and younger than yourself is really the right way to do it.  The older folks have gone through it already themselves, and survived!  That's encouraging.  The younger folks remind me of my younger days, not expecting to know what reaching older ages is like, both physically and mentally. 

Now that I've been "wearing" 40 for a few weeks, it seems to be less scary.  I still have to face the facts that I am now in a new age group.  Mammograms, colonoscopies, and bifocals are surely lining up for me in the near future.  I've had a few mammograms already - and yeah, OUCH - they are not fun.  But assuming the results keep coming back negative for any abnormalities, I'm okay with that. 

I came close to getting a colonoscopy back when my IBS was flaring up over several months, but as luck would have it, my awesome GI gave me a new medication that actually worked and we canceled the exam.  I am also aware of the process, as my husband has had several colonoscopies, due to his Crohn's disease.  It's not fun, lasts longer than a mammogram, and is pretty inconvenient, too.  Still, I can get through that.  I also have had an endoscopy done, if that counts for anything.

As for bifocals, I'm already nearsighted since high school, and usually opt for contact lenses to correct my distance vision.  Since that car accident in 2006, though, my vision has changed in several ways, and continues to change rather frequently.  I already notice my very near vision has become blurry, making reading fine print challenging.  Again, though, perhaps a prescription change is not so terrible.  I've been managing corrective lenses thus far.  I can probably handle that.  I guess.

So, these are not so scary.  Aging gracefully may still be an option for me.  Many folks make it to 80 and 90 in relatively good health.  With lifelong conditions like Fibromyalgia, Chronic Myofascial Pain, and Asthma, I understand I have additional challenges, but I also understand that being as fit as I can be is the key to empowering me with the best health I can achieve.  I know that eating healthy and staying active goes a long way toward preserving good health, so I will strive to do those things.

Some other recent events have also caused me to reflect on my age and mortality. 

Near the end of the workday on my 40th birthday, my husband suffered a severe kidney stone attack.  The stone was 6.5mm across and was stuck very near the left kidney.  I'll spare you the details, but life was miserable for him for several weeks thanks to this surprise.  We had to cancel my birthday party, and he felt bad about that, but I wanted him to feel better and stay close to home in case of any complications.  He's passed some of it and is feeling much better now, finally.

I also recently learned that my mother-in-law had suffered a stroke.  This was not her first, but it seems more serious that the one she had before I met her.  Although she was told that one side of her body will not recover this time, I am hoping that she can beat the odds and regain some function and sensation that was lost.  Thank goodness it was not her dominant side and she can still do some things.  I'm also glad that she can talk and remember us all. 

As we approach the year 2013, I have listed a few new resolutions (which I never used to do until 2012) that take into consideration my age, my health, my family, and my wants and needs.  I wish to be more responsible with my own health, as an investment of my old age as well as to help relieve others of the need to worry about me.  This includes considering making decisions and arrangements for what will happen to my remains when I die.  I feel it's the responsible thing to do. 

When life manages to give me warnings, I strive to make the most of it, whether it's through me or others, and learn something from it.  I won't live my life sheltered, but I will not live recklessly if I can help it.

Take care and do pay attention to your own body and look for the warning signs that could help keep you healthy and young at heart.  I hope the next year brings you closer to your personal goals and opens your eyes to wonderful opportunities! 

That Last Straw

Have you ever just had a terrible day when one thing after the next just went wrong?  Maybe it was more than a day.  I've been dealing with some bad news and stressful things happening and they culminated into a moment that, unfortunately, resulted in a mini nervous breakdown, because of that last straw that broke Benia's back. 

Singly, my stressful things weren't that unbearable.  They're no fun, but I can handle them alone.  It's when they all decide to happen together and overlap into an overwhelming mess of crap that I have trouble. 

For example, work-related stress over deadlines, earnings, etc. are also typical of most employed people.  My surprisingly high blood pressure is one more diagnosis for me to deal with.  Major household appliances expiring and requiring immediate action for replacement happen.  Then a loved one's health problems creeping in with a flare-up of unknown severity.  My car's check engine light decided to get in on the action.  Then a health insurance change with serious financial implications was suddenly forced upon us with little time to plan and research.  My asthma was feeling the stress and making sure I noticed it, no matter how much I fought it. 

Then I got a phone message from my parents - people who love me and miss me but have no idea how much strength I muster on any given day, just to get by and pretend I'm normal.  There is also a language barrier, as they are immigrants and I am American-born.  Our conversations are limited to what we can successfully express in the others' comfortable language.  I called back and just mention my having a bad day and before I know it, I'm getting lectured on how I can't possibly have anything to stress over because I have no kids.  THAT was the last straw. 

I could not handle one more thing and yet there it was.  I broke.  It was extremely unfortunate that I broke down while on that call, because without being able to explain that life just took a shit on me recently, I ended up not making any sense at all and ended up seeming secretive.  Who wants to list all their problems to people who immediately judge and compare them to their own standards?  I am not secretive or dishonest.  I just did not have a good way to convey my bad day and explain my emotional fragility.

THEN, THAT phone call added yet another unnecessary straw to my load.  Since then, I've been accused of keeping secrets and lying to cover up some problem that would be catastrophic.  My own parents had two days to speculate the very worst since my breakdown.  Today they made an excuse to come see me so they could find out more.  UGH, I did this so wrong!  They came and we talked.  Their accusations were not helping me.  I did my best to explain that I just had a bad string of luck but that I'm okay.  Nobody is getting a divorce or fighting or dying or whatever other awful things they imagined.  I also told them that I know that they are trying to help and that I appreciate it, but I just cannot take it right now.  They mean well, but the advice I get from them is just SO unhelpful!  If they only realized how much they are just making things worse with their loving help.  Knowing that they cannot understand and that they meant well is all that kept me from losing my mind all over again. 

I need a break, I tried to explain.  I think they got it, but they are far too generous with their advice about every last thing they think I need help with.  They cannot help me.  They make assumptions that I cannot seem to debunk for them.  There are details about my life that I am unwilling to have to share just to get them to stop helping.  Eat this.  Take that supplement.  It works for them.  OMG, just stop.  Thank you, Mom and Dad, seriously, for caring, but I just don't need this advice.

This is how I'm doing.  I will have better days, but not for a while, I think. :P

Blood Pressure - Still High Despite Getting off Savella

As you may or may not recall, the earlier part of my year has been tarnished with an unnecessary spike in blood pressure that could have been prevented by my former Fibromyalgia doctor.  Here's the post describing the worst of it.  Once I realized the cause of the blood pressure spike - two medications that should not have been taken together - I promptly got off both drugs, expecting my blood pressure to return to normal soonafter.

Unfortunately, months after getting off the drugs, my blood pressure still remains elevated, as I discovered during a check-up yesterday morning.  All my life, my blood pressure levels have been normal until January and February of 2012.  Now it seems something from that episode was changed in my body that cannot so easily be reversed.  After all, I've made several additional changes in my life to be healthier, starting in March or so when I adopted the habit of eating a healthy Whole Foods salad on workdays, and continuing through June when I started attending weekly yoga classes.  This blood pressure thing makes no sense to me. 

The doctor I saw yesterday was my gynecologist, and when she saw the elevated blood pressure reading taken by the nurse, she measured it herself, and got a slightly higher reading than the first one.  She wanted to make sure, so she also measured it again at the end of my exam.  I was calm and relaxed and she witnessed it.  The third reading was the highest, just as when I went to my primary doctor for the blood pressure spike earlier this year.  I hypothesized that taking blood pressure seems to raise it, but nobody confirmed that for me.  My final reading yesterday was something like 146/97, I believe.  She decided she ordered me to stop taking my current birth control pills (Seasonique/Amethia) immediately, since they contain estrogen, and apparently estrogen can contribute to high blood pressure.  This is news to me.  I was also somewhat surprised at the order, since I'd been taking these pills for many, many years now, when my blood pressure was fine.  Perhaps there's a cumulative effect or something else I'm not understanding. 

At any rate, she switched me to a progesterone-only pill while I mull over all of my options and my needs.  What I liked about my previous pills was the ability to minimize periods and their awful symptoms (for me), and being able to predict and schedule around periods.  With the progesterone-only pills (Micronor/Jovilette), I'm back to having less predictable periods and more of them.  I'm also considering Mirena, which my doctor suggested.  There are still some unknowns about whether it's the right choice for me, but I'm still researching that. 

Hopefully, getting off the estrogen will reduce my blood pressure.  I strive to be healthier, but seeing my blood pressure remain elevated through these healthier habit months is a bit frustrating.  I will read up on all the factors that can contribute to high blood pressure and see if I can change any other things for the better.  I do know there is a hereditary component, and my parents deal with hypertension. Plus I'll be 40 years old in a couple months, and age is also a factor.  This old body's not getting any younger, but I only get the one, so I'll do my best to take good care of it.

Success! ...and Stress

To follow up on my last post, I have been pretty good about not "cracking" my right wrist for the past month.  I caught myself on a few occasions, but I think the month has mostly allowed me to break the habit. I still need to pay attention to maintain and not slip back into old habits because it seems to have made a difference in the lightning nerve pains I'd been having in my right forearm.  I cannot recall having any episodes in my right forearm during the past month.

This little experiment is by no means conclusive with regard to a cause and effect.  I realize one month is not a large enough sample time to conclude the not cracking (much) prevents nerve pain, since the episodes can be very infrequent for any number of reasons.  However, it's enough incentive for me to keep trying to not crack and keep watching for other correlations.  Besides, who wouldn't prefer to having some sort of control over these wacky symptoms to just taking whatever luck provides?

That said, I know that my neck, back, shoulders, ankles, and knees all still crack, even if I try not to.  I'll still be as good as I can be about avoiding it if I can.  (Sometimes it hurts if I don't crack my back or neck.)

In other news, my work life has become unbelievably stressful in the past month.  I know it's serious because I'm having asthma attacks at work in addition to all the unpleasantness.  I'm on the brink of breaking down mentally from the pressures put upon me.  I almost had a nervous breakdown during my lunchtime yoga session today!  I would have thought yoga would help, but failing at all the demanding poses just added to my frustrations.  I kept it together by realizing I couldn't easily justify a breakdown to my classmates.  "It's just yoga!" I imagined they'd say.  And they're right.  Yoga, of all things, should not contribute to my stress, and it most certainly should not be allowed to be the straw that broke Benia's back!  After pondering the ridiculousness of it all, I managed to get through it and deal.  I knew I'd be better as soon as I'd gotten through it all and feel the accomplishment.  I did notice a lot of muscle tension and cramping today, though.  Probably due to the work stresses.

I know it's not right to let it affect me like this, but somehow I've gotten myself stuck in a terrible situation where I'm juggling several high-priority projects all at once and the rest of my team is doing the same.  Personally, I think my boss has lost his marbles about what is physically possible, but how does one go about addressing this with the person who controls one's income and other important things?  On paper, yeah - you go to your stressful person and say, hey, please lay off on the stressful stuff please.  In reality, there's a lot of apprehension about doing that, worry about doing it wrong, worry about consequences that affect not only myself but others.  Ugh...  I will have better days.  I just have to believe in that.

I'm doing what I can with what I've got for now.  Hopefully I'll live to post another day...

Ulnar Nerve Pain in Right Wrist?

I did some digging on the web to try to find out more about what's going on with the lightning pains I've been having lately.  I decided to start with seeing if I could find out the name of the forearm nerve that seems to be firing a lot.  While researching and experiencing some pain, I made a point to try to notice where I instinctively grab my arm and try to rub the pain out.  It turns out, the pain occurs on the  inner forearm, near the wrist, on the pinky side of the arm.  I always assumed it was the middle, but it's off to the edge a bit.

From what I'm seeing, this is the ulnar nerve, which is frequently associated with a condition called "tennis elbow", since it runs up to the elbow.  There's a great picture of the ulnar nerve's location here.

Something that occurred to me while doing this specific research is that I have a strange propensity and compulsion to bend my right wrist into its full range of motion to "pop" the joint.  My right wrist makes about 3-4 pops per... I dunno, per cracking instance?... each time I do it.  The left one does not crack at all, even if I try.  I was aware that I habitually do this, but I never thought it might be related to the nerve pain.

Most of the joints on my body have a lot of frequent cracking properties, especially my neck and ankles, and though I don't crack my knuckles, they would if I tried.  Going down stairs is when my ankles go to town.  I'm a walking bowl of Rice Krispies when I go down to the kitchen in the mornings.  I cannot help it.  They just pop and crack every couple of steps, over and over again.  I do not know why this is, but it's been going on for many years now.

Having established a hypothesis about my cracking wrist being related to the nerve pain, I naturally wondered if I may be causing or contributing to my nerve problem.  They are in the same location, so it seems plausible.  Bending my wrist may cause the nerve to move or get trapped or something, I figure.  Anyway, I decided I should try to avoid snapping this joint to see if it lessens the frequency of the nerve zaps in my right forearm.  I feel I may be onto something.

Cracking my right wrist is one of those things that I do subconsciously but have always underestimated just how frequently I actually do it.  It may even be tic-like behavior.  Now that I'm trying to catch myself doing it, or better yet, before doing it, I've realized that I do it a lot more frequently than I thought.  I have caught myself about to do it about five times before noon today.  I don't think I've actually managed to crack it yet today, but if I did, that's even more instances that I did not manage to notice or prevent.

This is a highly speculative experiment on my part, but since there is probably no risk to trying to quit this habit, I think it's safe for me to find out if it helps.  If this seems helpful, I may go on a quest to try to avoid cracking the rest of my joints, if I can.  The yoga poses may be helpful in strengthening my joints, if that makes any difference.  I'll report my findings after giving this a good trial, perhaps a month from today.

Sharp Nerve Pains in Left Shoulder and Neck

Lately, I've been working on improving my diet and doing regular exercise.  I've been pretty good about attending yoga and getting out for walks, and have also been good about eating fresh, healthy salads for lunch, and getting nutrients into my diet.  Last Friday, I tried a couple of veggie juice drinks instead of salad, to see if I would notice any difference.  Since watching Fat, Sick & Nearly Dead a few days ago, I gained more hopes that eating nutritious foods could be key to healing the body, or at least give it a fighting chance against the destructive forces challenging it.  There's a lot of crap in our processed foods, and avoiding it should help me.

Anyway, I tried a "Columbia Gorge: Just Greens" drink first. It was green juice made just from organic vegetables and nothing else.  Two pounds of veggies went into the bottle, so I figured it would have lots of nutrients.  It wasn't as tasty as I'd hoped.  Part of it had to do with celery being the first ingredient.  I'm not a fan of celery.  The drink was 50 calories per serving, with 2 servings in the bottle. 

I also tried this "Naked: Green Machine" one, which was the same size bottle as the other one, also contained lots of veggies, but also plenty of fruit.  I figured this one would taste better, so I saved it for relieving my taste buds after the other drink.  I also worried I'd get hungry, so I had both as a single meal.  The flavor of the Naked juice was great. It tastes like it's just fruit juice.  More fruit means more calories and natural sugars though, so I won't be having these regularly.  I believe this one was 140 calories per serving, with 2 servings in the bottle.  However, it's good to know that the option is there if I need some healthy stuff on the go.

There's also a troubling symptom affecting more often lately.  I am noticing a new location of searing, lightning-like, nerve pain on top of my left shoulder, going from my neck out toward the shoulder.  This is the third location of this type of pain that I've had to deal with.  The back of my right thigh is the first and oldest trouble-spot, and the pain jolts I still get in that area (affecting the sciatic nerve) has made me jump and shriek from sheer surprise and the sudden, severe pain level achieved.  When it hits, it usually keeps firing, rather quickly, for several minutes.

When I was first injured in that rear-end collision in 2006, there was about a week or so of the nerve firing almost constantly, and it even affected the left leg in the same area.  It was maddening to try to get through the day feeling like someone was chasing me with a hot brand, poking constantly into the backs of my legs.  I even decided that if it didn't subside, or if it was found to be untreatable and would affect me for life, I would probably have to think about killing myself.  It's not the kind of pain you can ignore.  I was being forced to constantly pay attention to the pain.  There are some dull pains you can ignore or get used to, so you can move on with your life, but this one is not like that at all.  It's a pain that startles you into acknowledgment over and over again, with only the rare second of relief in between jolts. This sicatic pain jolt thing affected me even before the car accident, but only very rarely.  I used to get these jolts maybe one day in a year and then forget all about it. 

Anyway, since the accident, the left sciatic nerve has been much more active, though I have had months without much of a flare-up there.  However, I'd begun to feel a similar jolt of pain in my right forearm.  It would just fire, unexpectedly, at random moments, on the underside of my forearm, right into my wrist.  And it's only been the right arm thus far.  This is the second location.  Here, the attacks would occur only occasionally - much less frequently than the leg thing, anyway.

But now, I've got this kind of pain occurring in my left shoulder-neck area, and it's been firing at least a few times every hour today.  It was doing it pretty frequently yesterday, too.  I also recall having to deal with it during the work week for the past week or two.

I'm confused about what this pain pattern means.  Naturally, I'm worried about some sort of nerve problem or damage, or impingement, and the fact that it seems to be spreading is no comfort at all.  I suppose my frequently spastic muscles could be squeezing these nerves, but with Chronic Myofascial Pain, I've been having problems with a lot or all of my muscles, not just certain ones.  I have considered the possibility that posture and habits could be causing these areas to be susceptible to either muscle spasms, which may be squeezing my nerves.  What I don't have is a treatment or prevention plan, other than to keep moving and stretching as much as I can.  I'm sticking to doing yoga at least weekly, and being sure to move around, even on bad days when I may not feel up to it.

If you recognize these nerve pain symptoms, or have any helpful information for me, please share in the comments.  Thank you.

Letter to My Future Self

Wow, summer is just flying by! Where does the time go? I can't believe July is almost over.

I have been doing relatively well with fibro, being active, and eating healthier. I still have issues, like trouble sleeping and pain symptoms, but overall, I feel much better lately and have been using my (unpaid) intermittent FMLA time less.

One idea I had been thinking about doing for a blog post is writing to my future self. Many of us write in out journals and blogs about how things are going at the present moment, but even if we don't do it regularly, we may, someday, look back and read an old entry, for whatever reason. Why not tuck in a little message to our future selves?

My message to me, whenever it may be that I read it, and however I am feeling then, follows...

Dear Benia,
I hope you are well. I am doing much better lately. I've been eating healthy lunch salads from Whole Foods most work days, and doing Vinyasa yoga each Wednesday for an hour.

My new fibro doctor is very nice and reduced my medications to just one for fibro, Cyclobenzaprine (aka Flexeril). I am doing well as it helps with muscle spasms as well as sleep. (I take it at bedtime.)

I am currently off all supplements until I need them and doing okay. My IBS symptoms are under control, thanks to my realizing I was getting too much of some fat-soluble vitamins from my diet, and did not need additional supplementation.

Work is busy and a bit stressful at the moment, for both of us, actually. We are hoping to make some positive changes there.

The master bathroom remodel is mostly finished, though we are still waiting for a couple of doors to come in and get installed. The project started in April! I'm just glad it's almost over.

The weather has been extremely hot and dry this year. The summer weather started at the last week of winter, in March. We've never seen anything like it! Many if our native plants are blooming early this year. They are surviving, though, and the wildlife is happy to enjoy it, too. 

We have also been having a lot of freak thunderstorms - almost exclusively. They roll in, pour rain for a bit with plenty of wind, lightning, and even hail. Then they move on and it's back to hot, calm, sunny weather.

It's been a strange year, but I'm trying to focus on the positives. I am going to update my WRAP soon, since I have learned a lot about myself since I created it.

Hope you are doing great. I love you, and don't ever forget that!

Benia

The Mack Truck is Back

So I had two good weeks without many symptoms, feeling good and in control of things with diet and exercise happening and everything.  Then Monday, something started up and I'm flaring up for some reason.  Was I too greedy with doing things while feeling good that I triggered a flare by being too active and not resting?

Last night I was awake all night.  Not so much as a nap came over me - all flippin' night.  I tried relaxing in bed with ear plugs, without ear plugs, tried lying on my back, my sides, tried thinking of pleasant things.  Nothing.  Hours and hours of stressful thoughts about various things going on at work that have been bothering me lately kept creeping back into my mind and and I could not fall asleep.  The stress broke me.  I don't know what it is about the middle of the night, but I felt so hopeless and frustrated.  I moved to the couch and read blog posts in my Google Reader on my phone to try to take my mind off things, since I'd given up on sleep.  Forget work today.  There's just no way.  I am a wreck.  I took a much-needed sick day.

It seems my abdominal area is tender and painful lately, mostly near the left side.  Air bubbles or ulcers  - I don't know any more.  It doesn't seem to matter what I eat, unless the tiny bits of apple I found in yesterday's fruit started something, but I picked them out.  (I'm allergic to raw apple skins.)    I just feel crappy.  Then there's the back spasm in my right side that came back to life.   Even the hydrocodone I took at bed time wasn't helping that.  I wonder if the medication kept me up instead of making me drowsy.  Side effects don't always make sense in my body. 

I've been trying to stay on this side of the sane/crazy borderline, but last night I think I wandered over the line a bit.  My mental state seems back in good enough order, but my body is stuck in physical disarray at the moment, and notice that it affects my thinking a bit.

As always, when I stay home due to illness, I can't help but feel the invisible pressure of all those chores and tasks I have to do.  There is some compromise where I go and do a couple of easy things, but I have a hard time just resting, which is what I need to be doing.  For instance, I have been meaning to update my WRAP and wish I would do that, but I know I should not be at the computer too long with this spasm screaming at me.  I washed up our farm veggies (we have them delivered weekly from a local CSA, Wellhausen Farms) and made a healthy salad for lunch, but it took a very long time, and I was tempted to just grab something like cereal and leave it all undone.  Despite all the healthy ingredients in my salad today, my belly is also complaining again and uncomfortable.  I folded some laundry, too, because I knew it would nag at me if I didn't.  Despite my fatigue, I cannot rest easily at all.  This is one of the common frustrating symptoms of Fibromyalgia.

I hate that I can feel so great, then shitty, so quickly.  It makes me feel bipolar in some ways.  I was hoping I could coast through the summer feeling almost like a normal.  I guess I had forgotten my limitations again and overdone it with activities.  I will learn from this flare, just like with every flare, but I'm not enjoying this lesson.  Ugh.  Time for me to lie down.  I hope my next post is more fun than this one.

Getting Too Much of a Good Thing: Supplements

I think I've finally broken the spell of my latest IBS flare-up!  I was headed down one path, but switched gears when I thought of the second path - the one that just might be the answer.  Let me explain...

As you may know, despite a welcome increase in energy and function, my belly has been all about IBS for the past month.  I got tired of waiting for this flare to calm down, since it's been causing me problems every single day for all this time (even through my recent vacation in New Orleans) so I finally broke down and ordered an herbal remedy.  It's called Iberogast.

My niece recommended this product to me after our great GI doctor (she also recommended him to me and he's great) recommended it to her.  I thought I'd give it a shot and see if it changes anything.

When my husband saw how much alcohol is in it (31%), he joked that it would be cheaper for me to use Jägermeister instead.  I scoffed until I started wondering what kind of ingredients are in "Jäger" and did some research. 

There are 56 ingredients in Jägermeister (vs. the nine herbs in Iberogast) and many of them are a secret, but considering both Jäger and Iberogast are from both Germany, and have both been touted as effective digestive aids, I have to wonder if both might be equally effective.

Anyway, Iberogast comes in a small, glass bottle with a top that releases the fluid in drops, so you can count them for appropriate dosing.  Adult dosage is 20 drops into a drink with each meal, as needed.  I took this with five total meals during just a couple days, with no change in my symptoms, before I stopped using it.  I had intended on giving it at least a full week's trial before determining anything about its efficacy, but before the second day was through, I got an idea about what might really be causing my symptoms, so I switched gears to find out.

My hunch was that perhaps my body was trying to rid itself of excess vitamins and minerals.  Too many nutrients?!  It seemed crazy, but the more I learned about fat-soluble vitamins and digging into my Calorie Count food log history and nutrition analysis, the more plausible this seemed to me. 

I'd been taking a lot of supplements every day for a while now, some per my previous doctor's recommendation, some per my own conclusions about what I need:

• multi-vitamin (includes iron)
• vitamin C
• vitamin D3
• super B-complex
• magnesium malate (twice a day)
• calcium
• fish oil
• probiotic

Several weeks back, I started eating more nutritious lunches during the work week and eventually decided to get my lunch from the nearby Whole Foods Market every workday that I could.   I loved getting delicious, nutritious food every day and not having to worry about dinner or weekends as much.  It worked out great, I thought.

I checked the analysis tool in my Calorie Count food logs (good thing I had this handy) and saw that many of the nutrients tracked were well over 100% for the day for me, on average.  Vitamin C was ridiculously high (>1200% average per day).  Vitamin A was very high (>300%).  Calcium was high (~150%).  I was even getting more iron than I needed (~200%).  Who gets that much nutrition in a day?!  Well, me, I guess.  I don't even know how much vitamin D, vitamin B, or magnesium I was getting.  Those nutrients aren't even tracked in CC, but since I was adding these supplements to my nutrient-rich diet, I wouldn't be surprised if they were crazy high, too. 

So, reading up on vitamins and nutrients. I learned that some vitamins, like vitamin C and vitamin B are water-soluble, so getting more than enough is no big deal - the kidneys flush them out and you flush them down when you go pee.  (What a way to waste vitamin C!)  But other vitamins, like vitamin A and vitamin D, are not water-soluble, and the body can get too much of them.  I also know that magnesium is an ingredient in epsom salt and other laxatives.  So I wondered if all these supplements, or even just one of them, could be causing my body these daily diarrhea episodes.  To find out, I was going to skip just the magnesium, but I decided to stop taking ALL of my supplements, just to see if anything changes.

I stopped taking them last Thursday and haven't taken any since.  By Sunday, I noticed a change: no poopie all day!  I was hopeful that this meant the end of the diarrhea, or at least a break from it.  I still experienced a crampy few minutes this morning, after breakfast, but later today, I actually had a regular movement.  I was so glad I wanted to tell people at work about it and celebrate... but of course I didn't.

Nothing's for sure, of course, but these are positive signs that I'm on the right track with this vitamin thing.  For now, I'm glad I was able to put this together and elicit a positive change myself.  I will wait and see if I continue to get relief by avoiding vitamins I apparently don't need, thanks to my healthier diet.  I guess the takeaway here is that you actually can get the nutrients you need from food and you can get too much of some nutrients.  Pay attention to what you're eating and if you have a mysterious IBS flare while eating healthy foods, consider quitting the supplements to see if it helps.  If not, there's always plan B, whatever it may be for you.