You’re “Big” Again!…You ran a 5K!…You May Not Have Fibro?

There are only so many emotions one person can handle in a weekend….

 

Friday Morning:  Baby A had his six month doctor apt.  SIX MONTHS! He promised me a month ago he would stop growing and stay my sweet, snuggly baby forever.  Promise. Broken.  He is now crawling…fast…after each dog, the cat, each electrical cord, every speck of dust on the floor, my feet, the chair…I thought the newborn part of having a baby was exhausting…huh…I was a fool. 

Emotions, Emotions…

Friday Afternoon:  Leave work a little early and get ready for my Rheumatologist appointment (almost two years overdue).  I ran into an old co-worker who felt the need to tell me I was “big again.” 

Emotions, Emotions, Emotions…..

Never have I ever wanted to punch an old man as badly as I did right then! It was one of those moments when you wish you had a quick, witty comeback that stings the other person, but is SO witty you just come across as sassy instead of a bitchy crazy person. 

No witty comeback here, instead I chose to first: call my husband who can always make me feel beautiful again and who also pointed out that some people only remember me as super fat and super skinny…no one seems to remember the middle…and there is/was nothing wrong with the middle.  Second:  I texted my co-worker who is always good for a quick (normally bad) joke and a few encouraging words.  She didn’t let me down and flooded my texts with jokes so bad you can’t help but laugh at them.

“Why does Peter Pan fly?…

Because he neverlands”

“Yo mama so skinny I slapped her and got a paper cut.”

“Yo mama so skinny she has to wear a belt with spandex.”

It was a reminder to feel blessed for the people I have in my life right NOW.

Emotions, Emotions…on to my Rheumatologist with a renewed smile on my face.

I went through the usual routine.  Temperature, weight (which was a risky request for that nurse after my previous encounter of the day), rate my pain level, etc.  Then I mentioned my concerns…correction…my many concerns.  I had suspected there was something “different.”  Apparently the doctor had the same suspicion.  After him asking me a million questions, he said my symptoms were no longer coinciding with my fibromyalgia diagnosis, and that I was showing signs of having an autoimmune disease.  I was told I will probably end up on long term medication.  I was told I could more kids if I wanted too, but I would be considered high risk.  I was told if it was Lupus, my organ function would need to be closely monitored.  It was a lot of information.  After my appointment I took my 9 pages of blood test orders to the hospital, confused the lab techs who asked me if my doctor wanted me to keep ANY blood in my body as they took 8 tubes, and that’s where my Friday ended. 

Emotions, Emotions…

I am waiting on blood tests to determine if I have lupus.  If that comes back clear, then he said he would treat me for psoriatic arthritis. 

To be honest, I’m not sure if I’m struggling more with a new diagnosis or the fact that fibromyalgia may not be what I’m fighting anymore.  Was I misdiagnosed from the beginning?  Did pregnancy just change things all together?  Will my symptoms suddenly fall back in line with fibromyalgia later on?  I think only time will tell on a lot of my confusion. 

I feel like I’m starting over like when I was diagnosed with fibromyalgia.  I hate the waiting game of finding out exactly what I have.  I’m cautious about researching the wrong thing. I hate not knowing, especially now that I feel “nameless” again…now that fibro may not be in the picture.

I’ve educated,  I’ve spoken up, I’ve researched, I’ve been researched, and I’ve been fighting fibro since 2008…have I been fighting the wrong thing? 

I’m not sure where my challenges start from here, but I plan to take the same approach with any autoimmune disease that I did with fibo…educated myself and live my life the fullest capacity I can. 

Emotions, Emotions…future Emotions…

On to Saturday….Yep that’s right…that was just Friday…

 

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I can finally cross something off my bucket list!  I completed my first 5K!  I did the color run here in town and had a blast.  To be perfectly honest, weeks leading up to this race I was dreading it.  I was actually mad at myself for signing up.  I started to train and then lost focus.  The weather has been beautiful and then THIS Saturday called for a high of 93 degrees and muggy. 

It was going to be miserable.

I was going to be too hot.

I was going to be slow.

I was going to have to walk the whole damn thing because I didn’t get up and train.

And then late Friday night after my emotional rollercoaster I just said “screw it.”

I ran what I could (which was more than I thought I could do) and walked when I needed to.  I laughed a lot and had a great time with my husband.  It was a fun day and a great stress reliever.  I’m so glad we did it and we’re already planning our next run.

Sunday:

Was spent cleaning, grocery shopping, napping and playing with Baby A.  Boring, non-eventful, and quiet…thank goodness!

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Explaining Fibro to Baby A…

Don’t you love when you’re struggling with something and then “POOF”, what you need to get through magically appears?

 

This past week I had a major fibro freak-out. After I dropped Baby A off at daycare I walking down the steps to head to work and BAM, one of the worse flares I’ve had in a long time hit me like a ton of bricks…and in this case, the ton of bricks landed straight on my knees, that then gave out on me, causing me to fall. My ego was hurt more than anything on my body from the fall, but I was a complete wreck from my flare. I honestly can’t remember the last time I had one so bad. I was shaking, my head, neck, shoulders, arms, elbows, knees, legs, feet…everything hurt. I walked into my office in tears. I am blessed that my office is a physical therapy clinic and I was able to get treatment to ward off my flare getting any worse. (Thank you to the PT who helped me through, she had her hands full with me that morning). I was utterly embarrassed from falling, crying in front of my co-workers and showing my pain.

After my embarrassment wore off a huge reality hit me.

What if I had baby A in my arms when I fell?

Would he have been hurt?

What if I can’t be a normal mommy because of fibro?

What if I can’t keep up?

What if I make him sad because I need to sleep, or he sees me in pain, or he doesn’t understand and resents me for it?

How am I going to be the mommy I want to be with fibro???

 

Then like magic, while I’m clicking through random fibro-flare google searches I ran across a book and the title immediately caught my attention.

Book

 

 

The book is “Why Does Mommy Hurt?” by Elizabeth M. Christy.

I’m going to be completely honest when I first saw the title of the book I was worried. I was worried that it would be pages of a mommy in bed with an heating pad and prescription bottle while their child sat sad in the corner.

After reading the book I feel terrible for being such a rotten pessimist.

The. Book. Is. Fantastic.

The book does a great job describing a chronic pain illness at a child’s level, but what I really love is how the book takes the idea on how to INCLUDE your child in your fibro management. With ideas like “being Mommy’s helper” when fibro fog kicks in, or learning to play quietly, little things where a child can feel like they’re helping, like they have a task and don’t feel helpless in a painful situation, which can happen to people caring for someone with a chronic illness….regardless of their age. It even describes helping mommy through fibro as “fun” and that one sentence changed my outlook on how I can handle working through fibro with Baby A. There are great lessons on comprise on activities during a flare, or spending time with Dad or Grandma when needed.

I also love that the book allows the child to feel sad and angry about fibro. I never want my son to try to put on a “strong” act and hold away any frustration he may have if I’m having a flare…I don’t ever want it to bring him down. I want him to get angry about if he needs to!

I can’t say enough about this book. My hat is tipped to you, Elizabeth…and THANK YOU.

A copy of this book is going on my son’s book shelf and I intend to read it to him often, and to be honest, I’ll probably read it a lot on my own when I need reminding that fibro doesn’t make me less capable as a mother.

To find out more about this book please visit WhyDoesMommyHurt.com.

Are you a parent with a chronic pain condition? Elizabeth has a great support group on Facebook called “Parents with Pain.”

Elizabeth was so nice to sent me her business cards and you can bet all my fibro friends will have one in their possession soon

 

At the end of the day, I want my son to be a fibro fighter…not a fibro victim.

 

Me and Aiden