Old Journal Entry from 2004; Hope Lost

I found myself going through some old journals of mine for material for my book.  I came across this one and found it so sad but so telling of that time in my life.  Here it is, for what it's worth.

Journal Entry 12/11/04

It's been a very rough couple of weeks.  I tapered off the Zoloft and started Cymbalta in hopes it would work on my pain.  But, either I'm not responding to Cymbalta or it hasn't kicked in yet.  Last week was so horribly miserable.  I didn't feel suicidal but I felt so dead inside.  I just wanted relief.  So, now I am taking the Cymbalta along with 100 mg of Zoloft (half of my previous dose).  Almost immediately after my doctor put me back on the Zoloft, I felt a lot better.  I am really struggling with my role as a parent right now.  I haven't been getting a lot of good sleep and I'm fighting the cold Nicholas has.  But, I have no desire to really engage and play with my little guy.  This makes me feel horribly sad and guilty.  I feel so burned out.  But, why?  Todd's been home all week on vacation.  This has helped me tremendously.  Since my med. change has been so tough and I've been feeling so tired, etc. it's been great to get some relief from full time parenting. 

Nicholas is the cutest, smartest, funniest, most imaginative little boy.  I absolutely adore him!  But, with winter here and the days long and dark and Todd gone 12 hours a day, I feel lonely, anxious and restless.  I'm having great difficulty being motivated and staying in the present.  Then when I do get a break on Tuesdays and Thursdays when he's at his little school, I feel so incredibly relieved.  When I get sitters so I can go to therapy, get my massage or whatever, Nicholas usually loves it.  But, I feel guilty!  I feel like a bad mom or inadequate when I need a break from playing trains or his imaginative animal games.  I feel like I'm failing him somehow.  I still feel so clueless sometimes in my parenting.  I can see clearly who and what I do not want to be.

I don't want to:   -have the TV on all day

                              - leave him alone all day or ignore him

                              - yell, spank or shame him

                             - ignore him so I can do my own stuff

                             - squash his imagination/creativity and self esteem

I do want:  - to read to him

                     -encourage him to play independently

                      - give him uninterrupted time alone with me each day

                      - be silly with him

                      - set clear limits with him

I find this last one so difficult because sometimes I don't even know what is okay and what isn't.  What is good/normal parenting vs. what is poor parenting.  I'm very unsure and confused a lot.  When he ever said, "I need a new Mommy because you are always sick and have too many boo-boos", he really struck a chord in me.  I often feel very broken and incomplete because of my Fibromyalgia.  I'm so tired and sick, especially in this weather.  Just being sick causes me to feel inadequate as a mother.  Not to mention, as a wife.  Todd is pulling 90% and I'm only doing 10% lately.  More guilt.  Add to all of this my desire for another baby and the conflicting emotions that brings up.  Ugh.  I'm thinking of seeing a new naturopath.  The person I was seeing was so nice but just not a clear communicator and I really feel like I need a take charge, motivated person to help me to hope again. 

Is there a lost and found box for hope? 

Enough really is Enough

Well, here I am on a beautiful, sunny summer day inside on my computer.  I am feeling mixed about this.  I would rather be outside sitting (okay, I admit it.........lying) on a chair but I feel compelled to write.  And when I feel that way I can only put if off for so long.  My last entry was all about coming off some medications.  I am happy to say that I am still here and did not fall off the planet as I felt I might.  I was successful in coming off one medication.  With the help of my naturopath, detox tea, gallons (I kid you not) of lemon water and literally and figuratively "sweating it out", I made it.  Shockingly, I was determined to wean off not just one medication but two medications simultaneously.  Yes, I like to have very high expectations of myself so that if (more likely when) I am unable to reach those often unattainable goals, I can slap myself around a bit.  It's such fun.  Lest I stay stuck in the past, I must say that I am learning!  It is not too late to re-program our brains, people!  Okay, so it's taken me almost 20 years to begin to actually do this, but hey I am trying!  Coming off medications can turn a fairly stable girl into a cross between Freddy Krueger and Regan McNeil (a.k.a. Linda Blair in the Exorcist).  Truly, I could hardly recognize myself, I was such a mess.  Not only did I feel physically sick, I was also on the most elaborate emotional roller coaster ever to be experienced. I wasn't able to sleep either, which was such a nice addition to all the excitement!  Take pregnancy, puberty, pms, menopause and times them all by 100.  That is a pretty accurate description of how I was feeling.  If you did not have the pleasure of being around me during this time, I'm really sorry you missed it.  I was a blast.   So, in the midst of trying to do something positive for my body, my body was also in complete upheaval and turmoil.  "How can this even be worth it?", I would cry to my husband.  I believe he was thinking the same thing, although I doubt it was about my medication!  On the sixth day of not sleeping, I finally realized that, strangely, I am not Superwoman.  This is always such a shock to me every time I come to this conclusion!!!  Enough was Enough!!!!! So, I sucked it up and went back on a small dose of my Klonopin so I could get some desperately needed sleep.  That first night of sleep was as good as eating the most decadent chocolate dessert.  I cannot even tell you how amazing I felt after a few more nights of blissful sleep.   So, as if I needed any added proof, I knew I had made the right decision.  However, the Wellbutrin is gone.  So are the little electric shocks that made me feel like I was going to tear my hair out.  Phew.  I made it.  Okay, so, I'm still on some Klonopin. However, I am down by one full dose.  And you know what?  That's okay.  I am okay (I may be channeling a little Stuart Smalley here).  I'm doing exactly what I would tell my best friend to do.  I'm taking care of me.  So, maybe I really want to get off the Klonopin forever.  I will.  When I'm ready.  Right now, I am enough.  And isn't that what we all need and want to feel in the long run?  Ahhh.  Maybe I do have some super powers after all.  I'm Super Me.  And that is good enough.

I'm sorry, I didn't realize I was an addict.........

So, did I get you with the post title?  No, it wasn't just a trick to get you to read my entry.  And, no, I'm not secretly a heroin addict.  But, I might as well be.  For the past 3 days I have been sweating, shaking, unable to sleep much, experiencing heart palpitations, mood swings, and irritability (that's a nice way to say I am biting everyones heads off and eating their bodies for dinner).  Why is this happening?  That is an excellent question.  I think I have the answer for you, although be warned.  You may not be ready to hear this or may not want to hear this. Truth be told, I don't either but here it is.   I have been on Wellbutrin and Clonopin for at least four years for depression and anxiety.  Interestingly, I began the Clonopin to reduce the anxiety that the Wellbutrin was causing me whist battling my demons of depression.  So, here I am years later unable to make my leg stop bouncing as I write this.  Over the past 5 weeks I have slowly been weaning off of these medications.  The key to going off meds is to, 1). do so with a doctor's guidance, and 2). do so very slowly.  Okay, no problem.  I am a good little patient.  I followed the rules.  So, why on Tuesday, after having had my last doses of these meds five days previous, did I suddenly get so sick?  It started with my jaw feeling so tight and cramped that I could barely move it.  My heart was jumping out of my chest and my body was now a home for electrical shock treatment.  No, I did not go to the hospital for electric shock therapy.  No need to.  My body was doing so all by itself.  So, here I am at home with my boys and it dawns on me that this may be medication related.  Hey, I hadn't dropped dead yet so I felt fairly confident that I could cross a heart attack off my list.  It was confusing to me.  I had been off the meds completely for five days.  Why now?  Everything was going swimmingly.  In only a few days time I went from peaceful and feeling healthier than I have in over a year to being a crumpled mess.  A recommendation from my medical doctor to go back on low doses of the meds to ease the symptoms was tempting.   However, my stubborn and pure bull headedness roared louder than any medical professional could.  I then called my naturopath and once I heard  her warm, kind and supportive voice, I realized that tears were falling down my face.  Instructions to drink my detox tea, increase my lemon water, continue to take my milk thistle tincture, purchase something called oats grass tincture and to call her today if I'm feeling horrible, calmed me a bit.  This is not to say that my symptoms lessened or that I was any more pleasant to be around.  But, I made it through the night and here I am, bouncing leg and all, writing this.  2 quarts of lemon water, and 5 cups of detox tea down and despite my killer headache I know I am doing what is right.  For me.  This is, perhaps, the most important message in my post.  We all have gut feelings for a reason.  Over the years we may have lost our ability to connect with ourselves.  This happens.  However, we can all reconnect and listen.  My time to wean off medications is now.  It was not my time years ago or even 6 months ago.  Not everyone needs or wants to do this and that is okay.  The key, I think,  is for all of us to grow confident in listening to our hearts, our guts, ourselves.  If I survive the next few days of detoxing I think I will be happy I listened to mine.  I promise to let you know.

New Study on Fibro/CFS and Thryroid Disease

Busy days here lately and this week is all about keeping me well enough to go with my husband to the Emmy's in Boston on Saturday.  Hence, lack of blogging.  This girl's eating well, napping when possible and taking more supplements and vitamins than I can stomach.  No, seriously some of them are really gross!

However, just came across this article and found it very interesting.  I like to read research and studies.  Sometimes I read too much.  It's like watching a bunch of news channels all at once by just clicking to switch back and forth from one to the next.  Gotta make sure you've got the FULL story!!!  Needless to say there are times that I need to calm down. 

I'm adding this link here http://thyroid.about.com/cs/fibromyalgiacfs/a/cfsfibrothyroid.htm

Having recently been diganosed with hypothyroidism, this interested me in particular.

So, take it for what it's worth.  We just need to remember our worth and our own power to read studies, research and then live our lives the best we can.  

To quote a bumper sticker, "I Have Fibromyalgia but Fibromyalgia Does Not Have Me".

Giddyup!

The Most Painful Symptom of All

So, I have been avoiding writing.  Not really consciously but deep inside I just felt blocked.  Well, I realized that maybe the reason I haven't been writing is because I have been feeling so much all at once.  What a perfect time to write, right?  Well, not exactly......for me, at least.  Add this to the list of "what I am working on".  

For most of my life, I have been uncomfortable with negative emotions.  Anger, for one.  This is fairly typical of most women, so I've read.  I have been holding in so much anger as of late that before I explode (picture the blueberry girl from "Willie Wonka and the Chocolate Factory"), I am going to go out on a limb and talk about my anger.  Well, at least write about it.

Chronic pain and exhaustion and all the limitations they create, just plain stinks.  I can manage it most days.  But lately I feel pulled back to where I was when I first was very sick.  This is so unfair!, I scream in my head.  Just watching someone jog by my house, makes me tear up and cringe.  You have no idea how luck you are! I want to yell out my window.  

Where did all of this suddenly come from?  Well, I think it began a week or so ago as I was leaving the "preschool" (okay, daycare) with my little one and I saw a woman with a baby.  She was trying to get out the door with her stroller, diaper bag, etc. along with her preschooler.  I quickly helped her, and suddenly I looked at her face.  That is when I realized how ill I am.  I can barely manage to get through the day and here she is with a beautiful baby.  I watched her leave as her little girl got on her bike and off they went, mom power walking with the stroller and little girl happily riding her bike.   I realized the vast difference between this woman and myself as a little piece of my heart cracked and slowly broke off.

My four year old has often asked if we could walk to "school".  Environmentally speaking, we really should.  The healthy person I once was, would not think twice about it.  Of course, we will walk.  It's ridiculous to drive when it is so close to our home.   However, that woman is not who I am anymore.  Of course, I still care about the environment.  Each time I drive back and forth the short distance to daycare, I feel the guilt.  I keep telling him, "maybe someday when mommy is feeling up to it, we can walk".  I try to believe this in my heart.  I want to be that mom.  I am that mom, deep inside.  Yet, she is trapped by this ugly disease (sorry, syndrome) that holds her captive and only lets her out on good behavior once in a while.

Just the other day my fourth grader asked me to take him outside for a bike ride.  It was 6:30 p.m.  Spring has come and with it the longer days.  It was a perfect time to go outside.  My yearning to take my children outside was so intense it was palpable.  My back was in a spasm, my neck felt like someone was stabbing me with a knife and my body could barely hold itself up.  I had to say, "No, honey.  I'm sorry.  Mom just isn't feeling well enough".  He then asked when he could have a friend over.  I began to see red.  Hatred and rage filled my insides like bubbling lava about to erupt.  I looked at my beautiful son and snapped at him.  He was instantly crushed and walked away.  At the time I was thinking, "What do you not get?  I have been limping around since you got home from school, begged you to help me unload the dishwasher because my back hurt too much to do it alone, and can't you see I am doing the best I can??!  How about a little empathy here!  Is that too much to ask?!"  Thank God, these words did not actually come out of my mouth. Quite honestly, I cannot remember exactly what I did say.  But, I will never forget what he said.  "I'm sorry mom.  That was a stupid question".   That was a stupid question.  Asking me if he could play outside and if he could have a friend over to play this week was a stupid question.  

After my husband got home, I asked him to take the kids outside (which he did) and then went to bed.  I felt so depressed, I just wanted to go to sleep and let the next day come.  Of course, I couldn't sleep.  When the boys came in to say goodnight, I spoke to my oldest and apologized about the anger in my voice.  I tried to explain to him that I was angry because more than anything I wanted to play outside with him.  There is nothing that makes me happier than to have his friends over and to hear their joyous laughter and watch their imaginative play.  I am, I told him, really angry at my Fibromyalgia.  I am not angry at you.  I want you to ask to do things.  Please always ask, I implored him.  I will do my best to say yes when I possibly can and I will say no when I can't.  We hugged and that was that.  I have no idea how my reactions impacted him.  I have no idea how much of my apology seeped in. 

Feeling so exhausted, I tried again to sleep.  Yet, sleep did not come.  Too many feelings happening at the same time.  I tried to read.  I tried to watch T.V.  I tossed and turned.   My husband came in to check on me and also to ask if he had done something wrong because I was acting as though he did.  I told him how angry I was feeling and how it wasn't about him or the boys.  He nodded, said goodnight and closed the bedroom door.

The thing is, it IS about the boys and my husband.  Maybe not intentionally, but all of this pain, exhaustion and emotional ups and downs affect them in a way I will never know the depths of, nor will I truly understand. 

In my world of chronic illness and chronic pain where I often feel no one understands the intensity of what I am going through, I suddenly realized that I, too, will never understand the emotional impact that this damn thing is having and will continue to have on my family. 

And that, my friends, is the most painful symptom of all.

Grace Under Fibro: Betrayal and What We Can Learn From It

Grace Under Fibro: Betrayal and What We Can Learn From It

Betrayal and What We Can Learn From It

Yesterday was Holy Thursday, the night we remember the Last Supper when, among other things, Jesus had to say goodbye to his best friends, knowing his fate.  He knew the path God had chosen for him.  He also knew that two of his disciples would betray him.  Think about it.  Imagine two of your closest friends turning their backs on you during a frightening, emotional and painful time.  Even when Jesus begged his friends to stay awake with him in the garden to pray, after saying they would never abandon him, they did.  They were human.  They fell asleep. 

As a Catholic, this week my mind is very much on Jesus' suffering.  He did not run away from it.  I think I might have tried.  I don't know.  When pain or fear comes our way, isn't it instinctual to turn away from it?  Or would I have the courage to stay and deal with it head on?  I'd like to think that I would never have been the friend who would betray Him.   But, would I?  Those were scary times and under the pressure of it all......... I just don't know.  When Jesus was condemned to death by crucifixion, He accepted it.  The ultimate betrayal but He did not fight it.  Courageously (on what we now call Good Friday), He carried that awful, heavy cross on a horrendous journey to Calvary, all the while being harassed and jeered at.  He was nailed to the cross and ultimately died on that cross for everyone, even those who betrayed, hated and abandoned Him.    

I've been thinking about how He walked through all that pain, emotional and physical.  Under the weight of His cross, He fell down a few times.  Yet, He did not stay down.  Instead,  He found the strength to get up again and continue on carrying that horrible cross.  He said to God, His Father, "Thy will be done.  Not mine."  Jesus was scared but He knew this was the journey God had wanted for Him.

I have been unable to blog for the past several days due to very high pain levels.  I have missed it!  Blogging is so cathartic and, for me, an excellent way to uncover emotions that I have been holding deep inside of me.  That, and I am remembering how much I love to write. 

However, with Fibro  and Chronic Fatigue,  my body often betrays me, many times without warning.  One day I can get out of bed and the next, I am barely able to move. Despite the fact that I have lived with this body betrayal for many years, I still have a hard time letting it just roll off my back.  Often I am angry and many times I feel sad and grief stricken.  To be honest, these feelings actually annoy me.  I know this is going to happen at some point, so why do I feel so upset when it does?  I am learning to try to stay in the moment and live in the pain and fatigue until I am able to pull myself up by the bootstraps (okay, pull myself up with my cane. It's a very attractive sight) and try to live some semblance of  a life.  

So many thoughts flood my mind right now.  How do I handle betrayal?  Am I able to find it in my heart to humble myself and forgive or do I hold a grudge and let it fester inside of me.  When I "fall down" with illness, how often do I get back up and keep walking through the pain with unflappable faith?  Or do I try to escape my pain and fall into depression? All good questions.  Do I have the answers to all of them?  Not really.  I know that I try to live in the moment and lean on my faith to help me.  I know this illness has taught me a lot about patience, acceptance, empathy and never giving up.  Some days I am stronger than others.  Some days I wake up knowing I am on the path I was meant to be on.  Many days I have endless hope.  I certainly keep trying new ways of relieving the pain and fatigue.  Some days are just plain, old rotten.

I've lost friends throughout my journey with illness.  I've been called a hypochondriac, told that if I exercised more I wouldn't be so sick, and been told to quit whining and get over it. 



Not being heard hurts.  Losing friends hurts. Betrayal hurts.   Even if I suspect it is going to happen, it doesn't make the pain lessen.  However, I can choose to keep on with my life.  I can set boundaries to take care of myself and I can also forgive.  I'm capable.  It is far from easy.  But, it can be done.  

In my small corner of the world, I can pick up my own cross and continue on.  I have people who believe in me, support me and love me.  I am not going to die from this.  I can choose to keep walking through the pain, continue to grow and keep hope in my heart.