Anyone dealing with Fibromyalgia knows how difficult it is to find a wardrobe that can deliver all of our needs which include the following:

• Expandable waistline for when our medications make us bloat
• Soft clothing that doesn’t hurt when it touches our skin
• Style!  Normally so hard to find along with the above two requirements

I am 46 years old.  I was a slave to fashion in my twenties and dressed like a mom with clothes that could be spit up and pooped on in my thirties.  Now I’m ready to dress for me.  Along with the points above I also require clothing that allows me to breathe for when I have hot flashes.  That means sleeveless soft shirts and light sweaters for when the chills come on.  Today I look for what will comfort me while at work and at home yet not make me look like I just rolled out of bed.

Most of J.Jill’s clothing fits the bill perfectly and an added bonus is their concierge service.  I normally shop online because I just don’t have the energy to walk into the mall and face all of those people.  The drudgery of looking in a three-way mirror at the bloated middle-aged body is sometimes just too much to take and once I’ve expended the bulk of my energy walking around the store and stretching to try clothes on the battle is normally lost.

Yesterday I walked into the store at the North Shore Mall in Peabody, MA and headed right to the woman in the middle at the wooden desk.  I sat down, told her my song of woe and she hopped right to business.  I thought she had forgotten about me but within a few minutes she told me to follow her into the dressing room and try on about 12 different outfits.  She kept checking on me to see what I needed and then we headed back to her desk.  Some items needed to be ordered so she did it right there and told me I would not be charged a shipping fee.  When she wanted to check to see if a different size was available in the store I said I’d go look and she told me, “You sit right down there and relax – this is what I do. “ 

What can I say? I’m in love with this store!  Now I can actually go in and try things on without the hassle of looking for clothes myself in a comforting environment that almost made it fun.  The fun will come if the Predisone works but for now I still hate shopping in public with a passion.

I highly recommend women with autoimmune diseases, especially who are middle-aged, to try out J.Jill.  I purchased a full wardrobe that will treat my body with care and allow me to function during a hot flash or a Predisone bloat!  There is nothing worse than being at work in an uncomfortable outfit while dealing with this horrible disease, and now you don’t have to.

My Rheumatologist started me on 30 mg of Prednisone per day last Tuesday.    Overall I would say that it is slowly chipping away the multiple layers of inflammation that have been holding me hostage from doing simple tasks like changing my sheets or going to get a latte. 

Although I am in a flare from catching the bug that led to my daughter’s pneumonia, it really isn’t as bad as it could be.  The pain that normally radiates through my shoulders and upper back is there, but muted by about 50%.  My energy level is low but unfortunately my mind is hyper at around 11pm.  I go for my next checkup in another week to see if the Prednisone helped to bring the inflammation markers down.  I really hope it is working full force by then because I have had a taste of my past life this week with random spurts of feeling good and I want more.

Today is my birthday, I am 47 years old.  For the past ten years my birthdays have been horrible so I try my best to ignore them.  Although I’m sick with a cold and in a Fibromyalgia flare up, I’m content.  God is wrapping His loving arms around me and guiding me, making sure I do what needs to get done.  I feel very blessed.

 I have a long to-do list and here I sit typing away.  The joint and muscle pain is at an eight today.  I don’t have the energy to

• take the trash out
• do ten loads of laundry
• clean the bathrooms
• take a band uniform to the dry cleaners
• make a homemade dinner for my kids

I wish I had a helper but I don’t and that is my reality.  I just listened to someone rant about how tired he is working two jobs and trying to survive on his own.  Sorry but I have no pity – every man for himself.  That’s my new motto.  I am without a support system and am feeling it today.  I can only count on myself.  I don’t blame people who don’t want to catch pneumonia – I wouldn’t risk it either.  I’m tired, starting to get sick and in pain. 

 Writing helps me but the pain in my thumb joints and wrists prohibits me from typing anything of length.  I hurt now just typing this but have to get my thoughts out.   I really wanted to enter a story in a thriller contest but I didn’t meet the deadline.  Three days prior to it I had 2,871 out of the required 4,000 words and was only halfway through my plot when my youngest daughter was struck with pneumonia.

One night we were at the ER until three am.  Healthcare in this state is abominable in terms of processing the patients.  We waited four and a half hours in a petri-dish of a room before seeing the Pediatrician.  There was only one doctor for over twenty sick kids.  In my humble non-medical opinion, I would say 75% of the patients there were not critical.  Why didn’t they have a primary care physician that they could go to for whatever was ailing their child?  Wasn’t universal health-care supposed to cure this waiting?  I would have never risked an additional bug by taking her to the hospital if she weren’t in an acute status.  These parents were there with kids who barely had anything wrong.  OK so I could be mistaken as my daughter points out – maybe there was something unseen going on.  If that really was the case then why was there only one doctor on staff?  This is not a onetime random instance – the hospital is famous for having sick children wait for hours to be seen.  I know times are tough and cuts are inevitable but really?  ER doctors?  Aren’t they kind of essential to a blossoming society?  UGH.  I’m tired as you might be able to tell.

 As far as my illness goes, I was prescribed Piroxicam for my arthritis.  I didn’t feel a difference pain-wise until day two.  It was a subtle difference, for example instead of sitting in dread of doing the dishes I just did them without a second thought.  It was a difference that I had to reflect on to recognize.  Then the stomach pain started.  On day six I felt sharp pains in my lower abdomen and my Irritable Bowel Syndrome flared up with a ferocity I rarely encounter.  My doctor told me a year ago that IBS is part of Fibromyalgia so that somehow comforted me – knowing it was already a part of a diagnosed disease and not a new thing entirely.

The doctor told me to stop taking the drug and to see him on September 20.  I am awaiting the appointment with bated breath and am hesitant about getting hopeful.  Each time I see my Rheumatologist I fantasize about him finally “seeing the light” and saying,

“Aha, this is what you have! Just take this pill – it has no side effects, and you will be back to the way you were five or six years ago.  You will be able to walk the beach for an hour on a sunny fall day.  You will do the dishes/clean the bathrooms/do the laundry/pick up-drop off the kids/cook the meals without thinking twice about it other than maybe procrastinating out of boredom but never from fear of pain.  You will have the energy to write those short stories you love to imagine and you will gain satisfaction from them, even if no one else likes them.  You will finally be able to lose the weight you gained from all of the Neurontin and Paxil since now you can go off of them.  Vegetables and fruits will no longer be the enemy of your digestive tract.”

Ha. It’s more likely for him to say,

“Well your test results still don’t show any sign of anything other than the Fibromyalgia and we’re already doing all we can.  Have you tried acupuncture or meditation?  Do you see a counselor at all?”

The answer is yes to all three.  I did try acupuncture and while I found sparse moments of relief, my pocketbook screamed out at me since it costs $30/visit and to gain anything I need to go three times per week.  The meditation does help and so does the counselor, but come on – with all of those bright new doctors out there is there really no cure? 

On the bright side, the sun is out and my favorite season, fall, is upon us.  I’m in love with the brisk wind that allows me to put on a cozy sweater when I go outside.  I love the crunch sound when I step on the dry leaves in my backyard.  I love the Halloween decorations in the Hallmark stores that I could spend hours and hours in, browsing each one at a time.  I love my new  cinnamon-stick candle burning in the living room.  That smell of autumn – that mixture of burning leaves, my cinnamon-stick candle, and brisk air combined with the sound of kids playing outside is enough ambrosia to push me through to the other side.  Despite everything, I’m OK today.

 I was diagnosed with Fibromyalgia about a year ago. Since then I have been in a flare up from Nov ’10 to the present with maybe two weeks of relief.

I attributed it at first to the stress of losing my home and moving. I dealt with it and did my best to show up for life and for work.

Pain in my stomach and abdomen worsened and long story short after months of convincing various specialists that there was something wrong with me, I had a full hysterectomy at the end of March ’11. Two months after surgery I went back to work and a week later had a flare-up that has been bearable aside from about two weeks.

The last flare up ended and for the first time the general pain evolved into several blossoms of localized pain – all in my joints.  The worst is in the basal joint under my thumbs.

This week my GP sent me to a Hand Doctor (never knew there was such a thing) and after some x-rays and hand maneuvers I was diagnosed with Arthritis. When I asked if it was Osteo or Rheumatoid, the doctor said he was leaning towards Rheumatoid after hearing the symptoms of my flare-up and seeing my rashes on my body – my Pier 1 Imports back scratcher is now my bff.

I have an appointment with the Rheumatologist who diagnosed me with Fibro on Sep 1. I went to him specifically because he is well known in the Fibro community and his wife has the disease.  At that appointment he gave a group of us a two-hour lecture for which we had to pay out-of-pocket. He examined me and said I have Fibromyalgia.

 ”But you said with Fibromyalgia, my SED rate would not be high because there would be no inflammation,” I said. (mine has been consistently high for the past few years)  He shook his head and said, “you have Fibromyalgia”.

I digested his statement and went home. I felt a little relieved that finally there was an answer to my pain. I was given a certain schedule of neurontin and told to do water aerobics.

Now I have Rheumatoid Arthritis with damage already done to my hands? Sorry but I’m po’d beyond belief. Had he dug a little deeper he would have recognized this and I would have been put on medication that would have prevented the damage that was done this year to my hands.

I feel beaten.  I know we are to be our own advocate when it comes to our health but seriously, I don’t have it in me to fight anymore.  It’s just air that dissipates once it hits a physician’s ear.  Why don’t doctors accept that the patient knows their body better than they do?  Why can’t they look up from their textbooks for one minute to see that the patient is wincing with pain and perhaps think out of the box for the answer?

I am wearing splints on both hands during the day and braces for when I sleep.  Lemme tell ya the braces combined with my cpap mask make me quite the sexy mama!  When I asked how long I will need to wear these for, the answer was forever.  When asked what medicine I can take to make it go away I was told that it is not a curable disease.

Fibromyalgia is painful and dictates every action I make in life.  I have accepted that as my future and was comforted by the fact that it is not a progressive disease.  Each time my condition worsened I clung to the knowledge that it is not a progressive disease and therefore this additional pain, disability was just a fluke.  Now – sobered by the fact that all along I may have had a disease that not only is progressive but could have been at least slowed down by various medications – I am paralyzed with fear.  Fear that some day these splints will not be enough to take the pain away.  Fear that some day I will not even be able to type.  There are various software products out today wherein I could dictate a blog or a story but are there also ones that would allow me to perform my work as a financial analyst?  I’m almost sure the answer is no.

One day at a time.  Just for today, it’s Friday.  Just for today, I still haven’t been formally diagnosed with RA.  Just for today, the sun is out, I have a roof over my head, my kids are healthy and happy, I have food in the fridge and water to drink.  I can make it one day at a time without jumping off a bridge.

“There is nothing more dreadful than the habit of doubt. Doubt separates people. It is a poison that disintegrates friendships and breaks up pleasant relations. It is a thorn that irritates and hurts; it is a sword that kills.”
— Siddhārtha Gautama

I am forty-five years old.  God and I are the only ones who know what makes me tick.  Why then, do I constantly doubt my Self? 

According to Webster’s Dictionary, the following is the definition of self:

“ The union of elements (as body, emotions, thoughts, and sensations) that constitute the individuality and identity of a person”

I am the one who feels, tastes, smells and touches these elements.  Why do I doubt their effects?  Why, when someone questions a part of my life that I know to be true, do I mistrust my body, mind and soul?  Well, the answer is simple and the way out is about as easy as tying a human hair to the leg of a fly so that you can keep it as a pet.  (No kidding, I know someone who did that in high school)

I was not taken seriously, for whatever reason, throughout my life.  I think sometimes I would purposely do something outrageous just to be noticed.  That part of my life cannot be undone.  That means that I have to start believing my Self when I feel sick.  I need to take care of my body as though it were the temple of cherished friend.  Would I ask that friend to mow the lawn when she is physically ill? No.  I would bring her soup, a few good books to pass the time, a soft blanket and pillow and let her know that I am here for her when needed.

I believe this is called “faking it until you make it”.  It is shocking that I have to imagine that I am someone else in order to produce any sort of empathy – that boggles my mind.   This does not only pertain to my Fibromyalgia – other areas that I am shaky about are my intelligence, my appearance, my relationships, my parenting skills, etc. 

Rome was not built in a day and I am not going to be able to work on all of the above at one time.  For now, it is enough that I take very good care of my best friend in the world – me.

I am at the tail end of a flare-up and exhausted from explaining myself to people.  At a time where I need to be surrounded by love and comforting I have the incredible urge to become a hermit with my head under the covers. 

The flare-up started about a week and a half ago when walking short distances and getting out of bed became difficult.  Walking from my cubicle to the kitchen at work left me breathless and dizzy.  My hips became achy when I rose from my seat.  Climbing the stairs in my house meant a minimum rest of fifteen minutes before I could move again.  IBS was in full on attack mode so food choices were slim.  Staying awake for more than a half hour was a real chore requiring an endless flow of Starbucks.  To sum it up – this one sucked the life out of me.

I am very grateful that it is Ramadan.  I have not gone on Facebook other than to see if I have a message, I have not watched any TV shows other than the news, I have not listened to the radio while in my car unless the kids were in it.  All of this has forced me to pray and thankfully I had filled my soul somewhat when this insidious disease showed its ugly face.  I prayed and I chanted and I meditated that God would fill my body with His love, His healing powers, His strength and His forgiveness.  I prayed for everyone that I am angry with – and that’s a long list these days.  I was not cured after each prayer but I could feel just a tinge of grace caressing my muscles and I could breathe.

That being said, I have two teenage daughters.  When they asked me what is wrong I might as well have been explaining quantum mechanics.  The result was a blank stare followed by, “Will you still drive me to my friend’s house?”  I don’t blame them – they are a product of how I have raised them.  I can only hope that when they are older they will think back to these days and feel tremendous amounts of guilt. (just kidding, heh)

My boss is relatively new so my flare-up and subsequent absences caught him off guard.  He called me into his office to point out that I haven’t been in the office a lot lately. 

Had he not pointed that out, I would have thought I was in my cubicle working like a machine instead of plastered to my bed like a dead bug. 

I pointed out that I am covered under the Disabilities Act and the conversation ended.  I think it is critical for any person with a disability to know their rights under the law.  I work at a large corporation with a great Human Resource department so I am fortunate.  I have filed an intermittent leave of absence form, which also protects me when I have to call in sick.  Again it is exhausting to have to educate people but in the end it is worth every email/discussion/phone call.

One day at a time and sometimes one minute at a time, I praise God for the suffering and envision all of my sins being washed away by the pain.

It seems like I have walked a very long desert to come to this year’s Ramadan.  Alhamdulillah for all of the organic and mental struggles which led me to this point.

Muslims with Fibromyalgia know all too well the intensity of the pain associated with fasting.  I tried it for about three years until my doctor finally convinced me that I should be kinder to my body.  When I would fast, both the lack of hydration and the stomach pains from fasting all day would trigger my disease and alert all important muscles to go into hurt-mode.  I truly do miss the fasting part of Ramadan, but c’est la vie.

Today I am much gentler with myself during Ramadan.  I cannot fast from food and water but honestly it is also difficult to fast from losing my self in music during the commute to work, television at the end of the day and surfing the world-wide web.  Nuh uh, television and internet too??? Yes.  Eliminating these distractions gets me *there* faster.  There = that inner place where I am so close to God/Allah that I can actually feel His presence and power.  It is simply amazing and every Eid I am astonished that I ever wasted my time on these things.  Of course about a month later I’m back to watching “Two and a Half Men”, listening to Zeppelin while zigzagging between cars in true Boston traffic fashion and spending my lunch hour on Facebook.

I am excited.  I know it will be hard for the first few days but omigosh is it ever worth it.  I feel very blessed to be included in this beautiful time of year.

I was filling up my calendar with our summer activities since, I can’t remember everything that is going on these days, when I spotted an appointment I have with my Rheumatologist.  I saw him for the first time last July when he gave me a plan of action which we are to review this July.  I haven’t seen him in a year, though my primary care physician has consulted him on several occasions regarding various ailments that have popped up. 

Fear is the word that comes to mind when I thought about this appointment.  We both had so many goals we wanted me to achieve.  *sigh*  Since that appointment the move, the being in intense pain for months, the hysterectomy and the separation from my husband have impeded the work that I needed to get done.  The most important on the to-do list is exercise.  Luckily, as I am trying to see it, my life has hit such a bottom lately that my only avenues towards up are running away – far away – or taking positive action to relieve the incredible stress that I am under.  I chose the latter due to the fact that I’m a mom and I’d probably start missing my kids after five minutes of being in the car.

The exercise of choice last July was water aerobics since it is very low impact and water is soothing to the muscles.  Well that never happened because I would actually have to leave the house to do this and I am constantly on call to pick up/drop off the kids.  I decided last week to try Yoga and I have to say, though I’m in pain now, I love it.  The release of stress is incredible while doing it and for hours after.  It’s my new drug of choice.  I have been doing Healing Yoga for Common Conditions via Netflix Instant Download using our Wii console.  It’s OK but I have decided to suck it up and go to an actual class because I’m not sure that I’m using the right muscles and I’m definitely not releasing enough tension doing the Downward Dog while both my teenage girls are staring at me wondering when I’m going to be done and asking why on earth I’m doing this. 

The search has begun and I cannot believe how many places offer yoga and how many different types there are.  There is a convenient Yoga studio down the street from me but it’s called “Hot Yoga” and outside there was a man standing in front of the doorway with shorts on but no shirt.  Forget the fact that I have hot flashes but seriously I wouldn’t be able to do a single pose with a class full of men like that.  I’m much too shy and embarrassed and would feel more comfortable in a room full of women.  Until I find the nerve to go to a class, once I find the class itself, I will continue to do the download that I have.  It really is amazing how wonderful I feel both spiritually, mentally and physically and now I have something to bring to the table at my appointment.  I guess it is better late than never!

God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.

Living one day at a time;
Enjoying one moment at a time;
Accepting hardships as the pathway to peace;
Taking, as He did, this sinful world
as it is, not as I would have it;
Trusting that He will make all things right
if I surrender to His Will;
That I may be reasonably happy in this life
and supremely happy with Him
Forever in the next.
Amen.

–Reinhold Niebuhr

I used to attend Al-Anon every Saturday afternoon to deal with effects of alcoholism and drug addiction that seemed to run ramped in my family back in the 1980’s.  I don’t know what happened but suddenly it became fashionable to attend twelve step meetings in the late 1990’s so I was grateful to already have a base of knowledge at that point.

I haven’t attended meetings for years – kids were born, divorce happened and being a full-time working single mom just took precedence.  Life happened and occasionally I’d attend therapy with a counselor who would take all of five minutes to get to the core issue.  Fifteen dollar copayment later my head would be clear and I’d go on my merry way until I came to the next roadblock.

There is a saying that is popular in most twelve step programs and that is that God never gives you more than you can handle.  Today I beg to differ.  He’s really pushing me to the edge of my limit these days and I feel like I’m holding on to a twig on the edge of a cliff trying not to fall off into the depths of the unknown.  

Doing God’s will and not Bridget’s will is very difficult if you’ve been out of practice and that is what I am dealing with now.  I am praying every day for guidance and for Him to lead me towards the path that He wants me to take.  I can only understand what that path is if I am very silent.  I am talking about the type of silence where if you close your eyes and meditate long enough on God, you can almost see the light.

Emptying my mind to that point is difficult.  You can’t even imagine how much is stuffed into my head at any given moment.  Last night I was in bed, eyes closed, trying to focus on God’s light and energy.  I felt like Dorothy in the Wizard of Oz as she’s looking out the window while the house is flying around in the sky.  Instead of the wicked witch of the west on her bike, Aunty Em, et al, I saw the dishes waiting to be put away in the kitchen, I thought about where my kids were at that moment and what they were doing, I remembered I have to get up at the butt crack of dawn to drop my little one off for her Washington trip, I worried about my little one going to Washington without me, I worried about my oldest starting to hang out with boys that she might actually like more than as a friend, etc.  It’s not pretty and took about an hour to empty it all out.  Then the cat nudged me and I had to go feed her.

The serenity prayer is an oldie but a goodie and I’m going to try to say it slowly focusing on each word and what that word means to me.  Hopefully I’ll get to that empty place at some point tonight and I will know what to do next.  Until then I have to wash the dishes.

I sit playing mahjong and the tears start to drip.  There’s a lump in my throat aching to scream out in pain, suppressed by fear of it never-ending.  I cannot concentrate on anything but missing his smile and the gentleness of his kiss.  The smell of his shirt teases me as I hug it while I sleep.

The doubt scratches at my mind.  Did I do the right thing?  If I take my heart out of the equation the answer is yes.  He is still in denial and would be bouncing back and forth from treatment to our house while my kids would wonder what to expect from one day to the next.  I lived that hell too many times in my life to allow it in my house.

I miss him.  I miss the way he made me laugh, I miss comforting him when he was depressed.  I miss taking care of him as best I could.  My stomach is on fire as the days inch by.  I keep thinking this is the day I’ll feel good as I wake up, but it never is. 

The cup of tea he made that last night still sits on top of his bureau.  His clothes are still neatly folded in each drawer.  The dust piles up on his night stand.  I can’t bear to touch a thing.  If I pack it all up, it means it is over and I’m not ready for that.  I am in limbo and it sucks.

I left my cell phone at work and I feel naked and scared.  I don’t know if I would have called but not being able to is paralyzing.  Knowing it was always a possibility comforted me somehow.  That seems silly but nothing makes sense when love is involved.

Loving someone when you are a single mom is too difficult.  I should have known better than to let my guard down and feel incredible joy and unconditional love.  Just like that last drink on an all night bender – it just seems like such a good idea at the time and then the hangover comes.  I was always chastised for waiting for the bomb to drop when things were going well.  Now I know why I had that feeling.  If it’s too good to be true, it probably is.