A little look into my life...

A little look into my life....

I am very honest in the fact that I truly believe I have had Fibromyalgia or a pain disorder since I was born.  I was 2 years old when I started stumbling and twisting my ankles.  I would cry for hours instead of the normal few minutes here and there.  

I remember a very blunt and vivid incident when I was probably 12/13.  I fell off the front porch of our apartment (normal step 6-8 inches).  I twisted my ankle so bad that I tore the ligaments in my ankle.  A very painful experience but because I would only cry in front of my mother they claimed I wasn't really in pain.  OKAY, REALLY???? 

No, Let me explain it.  Starting at 2 I began experiencing pain worse than any child should.  So excuse me that 10 years later, the only person I trusted to come into that pain filled world was my mother.  Even she began to believe the doctors.

Oh, I was attention seeking; No, I was exaggerating, I had a low pain tolerance, I was being a baby, I was sheltered.... and the list goes on and on.  I will never look at doctors the same because of what I went through growing up.  

Now, let’s add to the Fibromyalgia (or the possibility of a pain disorder) the fact that my childhood SUCKED!  My parents divorced at the ripe YOUNG age of 5.  I was about to start my Kindergarten year of school.  My father literally left in the middle of the night and did not even tell me goodbye.  My mom had a miscarriage that I actually remember.  (Side note: She didn't “tell” me I just knew she wasn't well as most kids do. I walked in the bathroom just as she was cleaning herself up.  Enough said on that.)

I then was in a tug of war between my parents. Actually more of a LET ME PULL THE HELL OUT OF MY DAUGHTER by my Dad.  My mom was not perfect in her life, but in mine she was.  I never went without. If I did it wasn't to the point that I ever felt I was missing something.  My father on the other hand was very much in and out of my life.  He would degrade my mom because she was on welfare.  She was 17 when she met him, got married, and got pregnant with me.  She worked up until she was married and he joined the Navy and they moved away.  She was a wife and mother until my father left.  (Yes, I was a Navy brat (GO USA!!!!) for the first 4 years of my life.)

My mother was always by my side.  I will say she met a man who was not good for us at all.  He was an alcoholic and drug user.  The only good thing about him in our life was my sisters.  He was a major stress for my life up until my mom met her current husband within one week of me meeting my first husband.  At that point my mom had finally kicked him out.  So from the time I was 5 until I was 18 (13 years). I had to worry about abuse to my mom. His alcoholic idiotic self would beat my  mom, come in drunk, break our furniture and so forth.  That added a lot to my stress load.

So back to my mom being a great supporter.  She always believed in me.  She still does.  So when I started seeing my mom complain in pain, I knew something was wrong.  It took several years and many doctors telling her different things before she was diagnosed with Fibromyalgia.  She still didn't get special treatment just the normal pain meds and a sucky Rheumatologist. 

After many years of not knowing why I was feeling the way I was.  I was diagnosed with Fibromyalgia in 2008.  I found a doctor that listened to me.  She was amazing.  My battle for those 30 years was very real.  She stated (in her opinion) that Fibromyalgia could be hereditary.  More exactly, she said, “How can I say it's not.”  My medical record follows very closely beside my mothers (minus all the lung issues due to her chronic smoking habit). 

My diagnosis was based on a pressure point test.  (Hind Site: she better be glad she didn't warn me 100% what that would feel like or I would have chickened out.)  I did flunk it or pass it depending on how you look at it  with 11 of the 18 trigger points being major.  That along with my chronic pain, loss of energy, and more things I can't even remember today.   The doctor referred me to a Rheumatologist.  

I wasn't able to see him for 2 ½ years due to him not being covered by my insurance plan.  OMG, when I did, he was pissed!!! He said I not only had Fibromyalgia (16 of 18 trigger points at this stage were major) but he wanted blood work.  11 tubes of blood later and 3 weeks waiting on the special tests I was sitting on his exam table with my bestie beside me.   He told me from my exam's and blood work I had more than just Fibromyalgia.  He informed me that I had Rheumatoid Arthritis and LUPUS (non active).  

I will never forget that day. It rang through me like a wrecking ball.  How was I going to deal with these two diseases on top of what I was already dealing with?  Then it dawned on me... I had them the whole time just now I could possibly get some medicine to help the symptoms.  I found a little relief in that. 

Now here I sit with active LUPUS, Rheumatoid Arthritis, Fibromyalgia, Degenerative Disc Disease, Spinal Stenosis, Chronic Fatigue Syndrome, Anemia, General Arthritis, Bursitis, Migraines, and the list goes on.  I am blessed to say that I am raising my now 7 and 9 year old children.  I keep my house managed (ok not every day but give me a break please) and stocked up

  

I started this by stating I believe that I believe my Fibromyalgia is hereditary.  Well most of my diagnosis' are things I have had since I was born.  They were in my DNA, cells, blood, and etc.  Somehow I was going to have these things.  I just wish they would find a test that could find these things way earlier.  I know they have come leaps and bounds with Juvenile diagnosis' since I was young.  I wonder if they came out with a test that would tell me what my children will have if I would actually have that test ran.  Or would allow them to fight life with all they have and not worry about it until the symptoms came up.... Makes you think.

Brandi

Why Opioids Scare Me (After 15 Years of Prescribed Use)

Forward: I am not knocking the use of medication of any kind, especially if they help you.  Stick around to the end, please....





I was first prescribed Narcotics when I was about 14.  I remember my first bottle of Tylenol #3 like it was yesterday, and the pediatrician that gave it to me.  It was because of this first doctor's belief in my pain (at the time, very frequent migraines) that she was the first and only pediatrician we considered when Robbie was born.  I quickly grew tolerant, and it became Percocet.  Then Fioricet. In between, Vicodin... and a lot of it.

By the time I graduated High School I had a standing refill for Vicodin because of my migraines.

I spent twenty-four hours a day on Percocet for about three weeks after an "oral surgeon" botched my wisdom teeth surgery in 2007.  A couple more weeks on Percocet after an emergency cystectomy a few months later., and about 6 weeks non-stop Norco for knee pain that was bad enough to keep me off my feet throughout the start of 2008. By June, I had blown into my very first Fibromyalgia flare that lasted until my first pregnancy in 2010.

From then on I was on Norco daily.  In January 2013 I started morphine; in February I put on my first Fentanyl patch.  (When they asked if I was opiod-tolerant, I actually giggled.)

I mean it when I say I have been on opioids for more than half of my life.  I turn 30 in June.

When my doctor, whom had prescribed 90% of these medications for me over my lifetime, first told me that because of the drug laws passed in 2014 she was no longer prescribing pain medicine to anyone I freaked out.  They were sending me to pain management and throughout every doctor who had refused me anything that helped (Not going over those multitudes or anything else I tried along the way, this post is 100% about the narcotics.)  I panicked over losing my pain meds... the only thing that somewhat made me functional.

But I was still REALLY sick. I had spent the last year throwing up and lost somewhere around 90 pounds.  We thought the Fentynal might be to blame, but figured they wouldn't give me anything.

What they did end up giving me was worth far more: belief, complete and whole hearted, in my pain. And a STRONG desire to fix it, not just cover it up.  And a little important knowledge; I had become intolerant to my fallback, my safety net...  we tried backing me off of the patches slowly, but I only grew sicker.  Patches didn't last their full intended length of time and my withdrawal symptoms were extremely violent. I had developed "Opioid Induced Hyperalgesia." I had to get off of every single narcotic, and get off of them fast.

We forced me into an acute withdrawal, and they treated me with Suboxone, the same substance used in detox centers for heroin withdrawal.  My next step is Low-Dose Naltrexone, a complete opioid blocker with a remarkable reputation for treating symptoms of Fibromyalgia.

So now I'm terrified of others reacting how I did.  I'm scared that my friends and family with chronic pain and long-term (even appropriate, doctor supervised) medication use may also be suffering from their own attempts at making themselves better.  Or one day, will.  That one terrifies me to no end.  So I get hyper-aware, always trying to see if they exhibit the same symptoms I was exhibiting.  Not out of judgement, but out of the same fear a person who has experience flying through the windshield of a car has for people who don't wear seat-belts.  Out of "What if..." and "I can't bear anyone else experiencing my pain."






And it's not because of narcotics, or even medication, per say... it's because I grew so complacent in my treatment that when I started throwing up every day I just assumed it was my Fibro. (Doc didn't care, she was just happy I was losing so much weight.)  I assumed the increase in aches and pain were Fibro.  But they weren't - it was due to my meds.  As I learned after coming off the opioids, my Fibro was the same as ever... no better or worse, although I felt 1,000 times better and became predominately functional again.  I even bought a bike!  (Although I haven't used it yet, between weather and pain...)  Now I primarily am treated with vitamin therapies, chiropractic, massage, and soon the LDN.  And once again I have hope of being functional most days of the week, because I am.

It's just one more reminder to never grow complacent in your journey to be healthy and happy.

Mom's Comment

I'm kind of torn where to put this one... as a comment, or as a separate post.  The amount of response I've gotten is leading me to believe it needs it own spot.

In the blog I wrote the other day about addiction vs. dependency and Robbie's birthday party (see: Robbie's 2nd Birthday: The One With Regrets) I got a comment that meant the world to me, and apparently to a lot of other people as well.  This is what my mom wrote in response:

I support Erin's post. Although I am one who has loved and supported her for 29 years, I had my doubts about some of the ways she acted and sometimes the way she has responding to medication in the past. I now know the difference between addiction and dependency. If you're an addict because you take opiates or pain meds, then I'm an addict. I have taken pain medication for over 30 years. It has its ups and downs but I keep to my doctors orders. I don't misuse it and it allows me to function at some level. I never experience a high from taking anything, because I never take more than prescribed. It would be fun to feel good and silly for a while but that doesn't happen. It takes the edge off the pain and lets me move and talk and become a part of society. So if I am an addict because of that then I'm an addict. I don't believe that I am; I am dependent on pain medication to help me live my life. 

In addition I employ other alternative methods for easing my pain; not all includes medication, and I'm finding the right combination that works best for me. It's a point everyone with any kind or level of pain should set a goal to reach, regardless of what their pain is all about. When you reach the point that you're ready to make changes, you make changes. And the people who love you will support you. I deeply regret misleading anyone during the period of my daughter's lowest lows. I understand now, and hope others will work at finding that understanding. 

Love you with all my heart, Erin, and want you to live a happy and healthy life. 

This message has been approved by Nana Becky. That's me. 

I'm still tearing up.  Thank you, Mama. 

Robbie's 2nd Birthday - The One With Regrets (by Erin)

Throughout the course of a lifetime of migraines (which I’ve suffered for longer than I have memories), other illnesses, and of course the Fibro, there have been a lot of occasions I have been forced to miss, even if I was physically present.  They have been laying heavier and heavier upon my mind and soul lately; perhaps if I purge them I will finally be able to move past them.  

One of the events that remains hardest for me to accept is Robbie’s second birthday party.  We had been looking forward to it for so long… ordering decorations, prepping the perfect shades of frosting, shopping like mad…  I was so excited.  I carried the “Cars” theme as far as I could manage.  I loved throwing his parties.  Celebrating the gift that is my firstborn.  My sister-in-law had set the bar so very high for her own children’s parties and cakes and I wanted my kids to love them as much as hers did.  I wanted so desperately to be the mom like her that rocked the parties.

So many people we loved were going to be able to make it; It was also Robbie’s last birthday as a single child since I was pregnant with Lex at the time.  I wanted it to be really special.  (But of course, I want all of his parties special.)

Except when I woke up the morning of the party I was SICK.  I was somewhere around my first trimester, deep within the throws of morning sickness that quite literally never abated, and had one of the worse migraines of my life.  I was devastated. I had done everything I could to be a “normal” mom on that special day for my son… and instead of bearing witness to the games, being the one to decorate, or just watching him playing with his cousins I was locked in a tiny bathroom retching every last drop of bile and the foam of pre-digested migraine medication I had attempted to swallow out of my system.  At that point there was no chance of gaining control.  I have more memories of what the inside of my father’s toilet looked like than the smile on his face while he smushed cake into his face. I remember more vividly the knocks on the bathroom door asking if i needed more ice chips, then I do singing "Happy Birthday" during cake time.

                                    

If you’ve never had a migraine, I don’t quite know how to explain it to you.  I can’t see straight, I can’t catch my breath, I vomit uncontrollably, I can’t keep food or fluids down.  Every noise is a thousand times more vicious sounding than long fingernails scraping down an old-fashioned chalkboard.  My reaction to light nearly causes me to believe in vampires.  I don’t know whether to compare the physical sensation in my skull to exploding shrapnel or a rusty two-ended saw or just the definition of hell.  It can be so intense that it sends your eyes rolling completely back into your head and cause you to lose consciousness from pain.  Heck, the above is a perfect description of a Fibromyalgia flare in addition to migraine... which, I might as well mention now, is often the result of a migraine.

There is little, if anything, worse. (Okay, having morning sickness compounded onto your migraine is a bit worse.  Plus withdrawals from the daily medications that you have been unable to take as directed due to the vomiting.)

Likewise, if you’ve never had Fibromyalgia, I don’t quite know how to explain that it can intensify any pain or discomforts a thousand fold.  What my experience of migraines was as a teenager is no comparison to the total body assault that occurs now as a Fibromite. (Does this happen to everyone with Fibro? No, but do people always present identical symptoms to every condition?  Do people react the same to treatments?)  Whereas most people start a 10-point pain scale on 0 ("Where is your pain… 0 is no pain, 10 is the worst ever?”), I start at a 5.  

Pause for a second and please really think about that one.  Imagine living everyday where your base pain level is what the person beside you feels when they are experiencing 50% of the worst pain of their lives.

Back to the story…. I missed out on the birthday fun.  I missed out on the people. I missed my sister-in-law’s short trip before she returned to Iowa.  I’ve had friends not return to another party or speak to me because of my “behavior” at this one… which only increases the burden of falling ill.  I can’t say I really blame them… I didn’t pay enough attention to them and they think I’m an addict, why would they want to come back?  Excuses don’t matter, in the long run.

I was, and am, blessed to have family and friends that did understand my situation and step up to help so I could manage my migraine and the severe morning sickness until we could get out of there and to the ER.  (The only “safe” and effective treatments I could get while pregnant was in the ER so they could monitor me and tummy-trapped Alex.)  Some didn’t even know I had a migraine; they assumed Fibro was rearing its head and in their compassion jumped up to help.  I’m grateful for those people that took photographs for me, dealt with leftovers, and that realized that I was truly ill and unwillingly missing moments that would never be returned to me… but they tried to keep me as present as they could.  They didn’t judge me for being sick… they made it safe place to be sick.

                     

After leaving the party we had to stop at a Carl’s Junior on the way home… I couldn’t make those extra 4 blocks home.  I barely made it in the door and literally barrelled over the “Wet Floor” sign” before sighting my goal.  We dropped the kids off at my in-laws and headed straight to the Emergency Room without passing “Go” or collecting the $200 (We paid instead, hurrah CoPays!).  It took multiple doses of multiple medications to gain control over the migraine and the vomiting… The doctor said my reasons for “sticking it out weren’t good enough” and I should have come much earlier.

Long after the party I heard the rumors that started and are still flying long after the party.  The easy one to hear was that I was bulimic.  But then they got worse. The real reason, as it has come back to me, is that I was on so many medications for my Fibro I had become a danger. (I was on fewer than ever, at this current point, but more on that tomorrow.)

I was an addict*, pure and simple… And I could no longer be trusted.  My absences during the event were so I could take more medication and get more stoned.  I was out of it not because I was in pain, trying not to heave on people, but because I was lit and getting more so.  My eyes were rolling back into my head not because of pain or neurological functions, but because I was taking dangerous amounts of drugs.  I couldn’t stay awake not because i had been up all night and was fighting intense pain, but because those medications were making me pass out. The icing of the rumor was that I would take those medications and drive in such an inebriated condition….. with children in the car.  (Where the rumors started, or with who, I really can’t say.  But there can be no denying they are out there, because they have come back to me from multiple sources.)

If only people just knew, or would believe, that my stumbling was because of the blurry migraine vision and intense vertigo… that I hadn’t held any pills down in over 24 hours or that anything I did attempt for relief had only made my symptoms worse and I was "as sober as a judge.” 

Or that I refuse to get behind the wheel if I feel even slightly “wonky.”  I probably have stricter guidelines on myself than CHP and/or any doctors would.

Or that I took less than 10% of the narcotics I was prescribed, and had been taking them since 2000 without any of the accused side effects.

But that changes little to nothing.  It doesn’t matter what medication I was taking. The point is that without spreading awareness about what Fibromyalgia and other chronic pain disorders do and the effects of the many possible treatments all of us are going to keep coming up against these devastating situations.  So talk.  Share until you are blue in the face. If we can change ONE mind, that just might prevent the suffering of another patient.

*Although some may consider me an addict, my addiction specialist believes in a clear distinction between "addiction" and "dependancy."  I officially fall into the latter category.



Edit:  My Mom's Response

New Year, New Hope. (I hope.)

Last year blew.  I started the year miserable, like most of us... it quickly lead me into the doctor's office and once again I lost the month of January to drug fog.  We tried Morphine and then Fentanyl.  Oh man, I felt so good on the Fetanyl... it was the closest to normal I've been since developing Fibro.  The daily aches, feverish feeling, allodynia... most of it went away (unless I forgot to change the patch!).  Norco took care of the rest if I needed it.  I got massages every other week, too.  I could manage my three boys.  We took a 5 day Disneyland trip and I was in better shape than the Norms.

But by late summer my tolerance was up and the patch just didn't cut it.  The FDA changed their rules and my precious Norco became a REALLY controlled substance.  My doctor cut me off, along with all of her other patients. She refused to prescribe any pain medications anymore, to anyone, for any circumstance.... and with no warning.  I was shuttled into a pain management program, filled with fear as to what they would do... if they even "believed" in Fibro.

As I feared, but also secretly hoped, the doctors at the pain clinic do not treat Fibro with pain medications... especially opioids.  The anesthesiologist's first demand for me was to start weaning off the Fentanyl. The naturopath's was an elimination diet to see if food allergies were influencing my pain (none found), as well as a huge mess of blood tests that included micronutrient testing that we're still waiting on results for.  The therapist and I have begun CBT (Cognitive Behavior Therapy) to rewire my brain's perceptions and reactions... and she has demanded I kickstart this blog and SLOf as a whole back up in addition to keeping a journal.

This month I will be undergoing a Suboxone treatment plan to get my body off the opioids, as the tapering process I've been doing for the last couple months has caused way too many withdrawal problems and takes a really long time to complete.  I don't really know what to expect outside of a complete hell during the forced withdrawal before I can take the Suboxone, but my eyes are on the prizes: NOT waking up in an opioid withdrawal every 3 days... the Fibro pain is bad enough without adding to it.  NOT having to pay attention to a little clear sticker on my bikini area, NOT remembering to replace patches, NOT picking up an RX every month.  NOT being addicted.  NOT having side effects.

As scared as I am for the process and the additional pain I will be facing during that forced withdrawal and afterwords (when I will have no more pain medication other than Advil), I'm more hopeful than I've been for an incredibly long time.  My naturopath will be doing vitamin therapies with me, as well as chiropractic and PT.  My therapist will continue to hold my hand through the process and teach me how to take each step, to think positively, to use breathing and meditation to quiet my nerves and pain. And maybe the anesthesiologist can find something safer that works a little bit better than ibuprofen.

So... I'm taking off on a journey to well-being again.  Anyone coming along?  I'm determined it will end in a better place than it started.

May it be a Happy New Year.

Oh no, not the way to start a new year..

Well 2014 was a very trying year...  I had a roller coaster of a year. I became engaged to an amazing man. We are working hard on getting things together and organized so we can get married. 

My mother has been in and out of the hospital battling the advanced stages of COPD.  We are blessed that she is still with us.  I was denied my disability, appealed, denied the appeal, and now going to the Federal Court for an appeal.  My ex-husband had a heart attack and thankfully survived.

With all that I have been dealing with you can only begin to imagine the level of pain I have been experiencing.  I have a great pain management regime now and I am blessed for that.  This last year also brought on my first Lupus flare. Omgoodness!!!! I could have lived my whole life and never went into active Lupus, but no it decided to rear its ugly head.

Now on January 5, 2015, I will be going in to request a new MRI.  I feel the degenerative disc disease I have has progressed to a very frightful state.  If my feelings are true I am facing back surgery.  I am Mom to two very active, special needs having, and loving children. They are 6 and 8.  I'm more fearful of surgery because I have to provide their every need.  How do I take them to school, doctors appointments, and provide for them while I'm recovering? 

It's not the way I thought I would be starting my new year.  I'm scared, confused, and excited.  If the surgery will help with the unbearable and undescribable pain I'm in, then it will be a huge blessing.  That is what I'm keeping my eye on.  It will be amazing to be able to bend without the sharp, stabbing and debilitating pains in my spine.

See-Sawing

Up and down.  Down and up. Up and down.... I'm stuck on a friggin' see-saw called Fibromyalgia.

Up and Down:  While I was pregnant with my first, I had a Fibro remission.  6 weeks after having Roo the Fibro came back with a vengeance.  It chewed me up, spat me out, and then did it again.  I felt like I was paying the cost of the remission. The next months were pure hell.... (The hell many other Fibro patients face when trying to find treatment and a doctor that gives a fig.)

Down and Up:  While pregnant with Alex I had lots of flares, many migraines that sent me to the ER, and the CFS was always on my butt.  It was really miserable, physically, mentally, and emotionally.  After delivery I felt absolutely great. Some days I even wondered if I was entering into another remission. 

Up and Down: I've been trying to do better at my job as a Stay-at-Home-Mom.  I've been really motivated to get our apartment back into decent and organized shape after a lot of neglect.  I've made some leaps forward that I'm proud of.  I've cooked yummier meals in the last 2 months than I had in the past year. I've scrubbed and wiped and cleaned. And I've done it all while keeping the rugrats happy, fed, and out of trouble.  But with the increased activity, the pain has been building.  Fatigue is sinking into the marrow of my bones.  Today I heard a voice in my ear as I got out of bed (It sounded remarkably like the little girl in Poltergeist)..... "It's back!"  I acknowledged it and shoved it aside... then pushed myself to get the boys to the park.  By the time I collapsed on the couch after getting lunch made, I was done for the day.  My body was shot.  I hurt, I ached, my back burned, my fingers were about to shatter like glass... And my eyes could barely stay open.

Down:  And every time my pain levels rise my anxiety rises too.  My mood darkens.  My will shrivels.  I have to re-learn Fibro.... Again.  I had a handle on all this crap before I got "in the family way" with Alex.  I had routines, I had methods to deal with Roo, I had meds that (mostly) worked, and I was in a place where flares weren't taking me down emotionally. I was coping far far better than I am now.  But then again, I only had one kid to take care of.  Now I have 2 - a toddler in an intense "Mommy cling" phase and a three month old that needs to nurse every 2 hours.

And Up: My Silver Linings are that my hubby is still helping.  My toddler understands "Mommy doesn't feel good, it's going to be an iPad day."  My baby doesn't need much other than my boobs, arms, and some cooing.  I know that since I've figured out pacing before, I'll figure it out again.  Another is that the flares I've been experiencing have been "mini flares" and have yet to confine me to bed or render me unable to care for the kids..... And for that I am truly grateful.

I can ride this see-saw, I just gotta remember how... And believe that I can.