Big Pharma

In light of my last post, I thought I'd continue with the Fibromyalgia journey.  And a journey is just what it has been.

After doing a ton of research, I went to my doctor.  You see, the side-effects of my medication were (to me) outweighing any good it was supposed to be doing.  Whenever I'd call the doctor's office with a new "ailment", it was considered a side-effect of the medication.  And many times there was an offer of another prescription to alleviate said side-effect.  Had I gotten every prescription filled, I would've had the meds list of a 90-year old!  It was reaching the point of ridiculous for me.  I was too young to feel as old as I did, and as rotten as I did.  The bad days far outweighed the good, and my energy level was at an all-time low.  Horrible depression kicked in, which was ironic, because the medication I was on was in fact, an anti-depressant that was highly used for Fibromyalgia pain.  But with the depression, things started to spiral -- and not in a good way.

In the process of side-effect after side-effect, relationships started falling apart.  You see, when you're a hermit, people tend to think you're avoiding them… which couldn't have been farther from the truth.  When I don't feel well, I curl up in a ball and pretty much hide from the world.  Not because I want to, but because when I hurt, I hurt everywhere.  I can't be touched, and every single thing jumps up & down on my last nerve.  I will have the TV on, but the volume completely down…simply because I can't stand the noise.  So when I had a friend offer to come & sit with me, it was a beautiful gesture, but one that would've made me completely crazy.  How do you politely say "I'm sorry, but you being here will make me miserable, but…thanks anyway"??  So you see, this is how relationships can fall apart, friends & family included.  Which makes depression spiral even more.  You see people living their lives, and you're not able to live yours the way you want to -- so you just crawl back into your shell.  It's a vicious cycle.  I had to, however, be selfish and take care of myself.  I had to take back charge of my life!

Back to my doctor… after wanting to prescribe more & more prescriptions to alleviate side-effects, I asked him if I could just get OFF of the medications & see how things went.  Because in all honesty, I didn't feel anywhere near as bad before I started taking the Fibro meds.  He was very much against it.  BUT, he wasn't the one that was living inside my body, I was.  And I couldn't take living like that anymore!  I thanked him for his opinion, but asked him how I could get off of the meds.  Begrudgingly, he counseled me on how to titrate off of the medication, but with a side order of "when you come back in here begging to be put back on the meds, I'm not going to say 'I told you so' (but he would've)".  This was not one that you could just stop taking cold-turkey.  And boy, he was right.

If you want some light reading (insert sarcasm) sometime, Google "Cymbalta Withdrawal".  It's the stuff that nightmares are made of.  I'm not even kidding.

So on July 1st, I started my titration down off of the medication.  The first week wasn't so bad.  The second week was worse.  The third week was hell.  The fourth week was PURE hell.  The fifth week was a little better than hell.  The sixth week was okay.  The seventh week was doable.  The eighth week was good.  I had been on the medication for just a little over a year, and it took me eight weeks.  E-I-G-H-T WEEKS to feel somewhat like myself again.  For some people who had been on the meds for years & years, it takes them months & months & months to get back to normal.  I would have to say the "brain zaps" were the very worst.  The only way I can describe a "brain zap" is that it's like having a jolt of electricity shot up into your brain -- only you never know when it's coming.  Sometimes it would be in rapid succession, and others, just one at a time.  And it would sound like a cymbal crashing in your ear at the same time.  Add on the extreme nausea, and wow, I was a walking party.  A walking, exhausted party.  The nausea would hit between 2-3 pm, and would last until the next morning.  During this uber-fun time was our vacation, as well as my birthday.  Try scuba diving with "brain zaps"… not fun.  For my birthday, my husband surprised me by renting a convertible for me.  And I was so excited for it!  However, he had to drive it home from dinner because I was so sick.  Nothing like hanging your head in front of the a/c vent because you're afraid you're going to hurl all over the interior of this beautiful car!!  And when plans change and you can meet a best friend for a birthday cupcake (because you have extremely low blood sugar), and when plans change from a lake house location to a hotel, and your 3 best friends take care of you -- and enjoy your convertible (because your husband rented it for you for the entire weekend - because he's just THAT awesome!) in the spurts where you feel somewhat human…and the best friend who texted you daily, and the cousin that texted you daily… those times are golden.

Only a handful of people knew about me going off of the medication.  Why?  Because if I didn't succeed in coming off, I didn't want to look like a failure.  And these were people that I trusted with every bone in my body.  I now know what a drug addict must feel like.  As awful as I felt while ON that medication, the withdrawal symptoms were so vile, that it crossed my mind multiple times to just get back on it so I wouldn't have to feel the way I did.  And what a vicious, horrible cycle that would've been.

I know many people who have had great success with taking Cymbalta for Fibromyalgia, or for depression, and I'm happy & grateful for them.  I, however, am not a success story, and that drug to me, is the devil.  There is a time & place for "Big Pharma", and I'm coming to realize, it's just not always for me.  Please, don't get me wrong… if I'm really sick, I'll take the medicine!  But when it causes more problems than it's helping, well, it's not for me.

Want to know what side-effects I had while on the medication?  Better sit down…
          Weight gain, brain fog, memory loss, hair loss, headaches, nausea, dry mouth, dizziness, rash, swelling, pain, panic attacks, extreme thirst, low blood sugar, tremors, neuralgia, sweating, fever, insomnia, excessive fatigue, …and these are just the ones that come to mind at the moment.  Or, what's left of my mind!  It's very scary to me that this medication completely wiped out parts of my memory.  I don't recall a lot from the year I was on this medication.  And the year prior to that, while I was on two other medications, was nearly the same.

So, after I had completely detoxed off of the medication, I began to realize how "not myself" I had been for nearly two years.  I had energy again!  My pain was still there, but not as intense, and not so constant.  It was manageable.  I wanted to be social again.  I wanted to go out & DO things with my kids -- things I had been unable to do.  I felt like "me" again!

I started eating well.  I started exercising again (when I could).  I began meditating.  I utilized massage therapy & acupuncture.  I began using essential oils daily - for everything.  I reevaluated relationships.  And I gained my life back.

I owe my strength to God, because He was the one who got me through everything… I literally owe everything to Him… His faith never left me.  My gratitude for my husband & kids is unmeasurable.  My parents were paramount in my recovery.  The friends & family that stuck with me and didn't turn on a dime were & are invaluable.

All this to say that what this entire process boils down to is trust, and mine was shaken to its very core.  Trust your gut.  Trust your intuitions. Trust your journey.  If things don't feel right, they probably aren't.

I have to trust that my doctor had my best interest in mind, however writing extra scripts wasn't the solution for me.  I had to trust that I knew my body better than he did, since I was the one living in it, and saw it crumbling.  I had to trust those closest to me to help pull me through the best & worst.  I had to trust that taking care of myself from the inside out is what was best… and so far, that has been proven to me.

This past year has been a journey of trust.  One I choose to never repeat, and one I'm still reeling from, but I will get there.  My journey for 2015 is PEACE.  I've got to make peace with the past year in order to trust again.  Does that make sense?  While it sounds weird to say that I'm grateful for bad things that happened this year, I am.  Why?  Because it opened my eyes to so many new things.  Holistic healthcare.  My faith.  My relationships.  My well-being.  My journey.  Myself.

Trust = Peace.  Peace = Happiness.  Happiness = Journey.

I know not everyone will understand this journey, and that's okay.  It's my journey!  I hope you all can find your own, too!

J

Wow, it's really been a while!

So ya, it's evident that I've been pretty lax with blogging. Seems like I go in spurts, but I'm chalking that up to being a busy mom of 2 kids with busy schedules and the fact that I'm their shuttle service!

The biggest thing that's happened over the past year is that I was officially diagnosed with (severe) fibromyalgia.

 What is fibromyalgia? 

  Fibromyalgia (pronounced fy-bro-my-AL-ja) is a common and complex chronic pain disorder that affects people physically, mentally and socially. Fibromyalgia is a syndrome rather than a disease. Unlike a disease, which is a medical condition with a specific cause or causes and recognizable signs and symptoms, a syndrome is a collection of signs, symptoms, and medical problems that tend to occur together but are not related to a specific, identifiable cause. Fibromyalgia, which has also been referred to as fibromyalgia syndrome, fibromyositis and fibrositis, is characterized by chronic widespread pain, multiple tender points, abnormal pain processing, sleep disturbances, fatigue and often psychological distress. For those with severe symptoms, fibromyalgia can be extremely debilitating and interfere with basic daily activities.

I encourage you to click on this link to learn more about fibromyalgia.  It's really important to educate yourself on issues such as these, especially if you know someone, or have a family member who suffers from this.  

Fibromyalgia is a cruel & frustrating syndrome.  I feel like I've aged about 20 years just in the last year.  After trial & error periods with medications…trying to find something that works, losing half the hair on my head (it was literally coming out by the handful), not being able to give/receive hugs or wear some clothing because my skin hurts so badly that I want to scream, not remembering things because my memory has all but left me, not being able to attend my kids' activities, not being able to exercise often due to pain, not being able to get out of bed somedays simply because my pain level is too high… it goes on & on.  I'm a virtual shell of the person I once was.  I'm usually a very outgoing person, and over the past year, I've turned into a really awesome hermit.  I really have to give serious props to Mike & the boys.  They have really stepped up to help when it was/is needed.  They are my ROCKS!!  I literally don't know how I'd get through all of this without them.

I'm not writing this to elicit sympathy, in fact, I'm doing the opposite.  I'm writing this to help educate people!  Fibromyalgia seems to be one of those syndromes/diseases that falls under the "it's all in your head" category.  I'm here to tell you, it's NOT in my head!  I had a family member tell me that doctors diagnose people with fibromyalgia when they can't figure out what's wrong with them…and my mouth dropped open.  That family member witnessed me in the midst of an awful, debilitating flare, and quickly apologized.  That's just the thing, many people don't understand it, so they're quick to sweep it under the carpet -- as are many doctors.  

I wake up each morning never knowing how I'm going to feel.  That makes it very hard to plan things!  I hate having to cancel plans.  It has also made taking pictures very difficult.  I've really pulled back with the photo biz for a while.  After trying to get through a shoot with hand/arm tremors and half of the pictures being too blurry to use, I realized that I needed to stop.  It's not fair to my clients to not have quality work, or to have me reschedule on them due to a flare-up.  That has been a very difficult decision for me, but one that I know is right.  Photography is a passion for me, but I feel like maybe life is taking me in a new direction now. 

Because I have many days where it hurts to do just about everything, I have taken to researching fibromyalgia.  I have been looking into a more holistic approach for pain relief.  I have such a severe reaction to pain meds, that there is very little left that I'm able to take (and let me just say, Advil doesn't even touch the pain).  I've tried acupuncture, and had some success with it, and need to start doing it again.  I've also been experimenting with essential oils to treat my symptoms.  Why?  Because I really don't enjoy keeping CVS's pharmacy in business!  I don't like taking pills if I don't need them.  

I've been able to treat individual symptoms with different essential oils with some success.  I've been using doTERRA essential oils since before Christmas, and I love them!  To feed my oils habit, I became a consultant.  Check out my website!  Jenni's doTERRA Website  These oils not only help me, but they've helped Mike & the boys, too!  I'm really trying hard to watch what I put in & on my body.  I'm "going green", if you will.  :)

I've had many people approach me with "miracle" ways to relieve my pain.  While I really appreciate people wanting to help, what works for one person most likely won't work for another with fibro.  There is no magic pill.  There's no magic diet.  There's no magic exercise.  It takes a lot of trial & error.  Little by little, I'm finding my way…but as I'm learning, it's going to be quite a journey!  

I feel like I'm rambling.  Sorry!  This is a subject I've wanted to blog about for a while, but just haven't. I hope it gives a little insight to what I deal with on a daily basis.

Love & hugs,

Jenni