myfibrostory

Story of a Fibro Warrior…

So Damn Lucky… October 22, 2014

I had to take a step back this week after getting extremely frustrated people were not understanding what I was going through as the weather changed, I flared, I was swollen in weird places, I was tired, I was grumpy and I just wanted someone to know exactly what I was going through.  I’m beyond frustrated to start over with a new diagnosis.  I don’t want to learn how to manage all over again.  I don’t want to re-learn how to explain it to people all over again. I just don’t want to start from the beginning…all over again.

But I have to…

Sometimes I think the pain and exhaustion of my chronic illness is so strong it should read across my forehead.  I had to come to the realization, once again, that beyond some visible swelling or skin issues, my conditions are invisible.

If I tell someone I’m hurting, they don’t know what that entails.  I wanted to visually put into perspective what is going on and hope that can help to clarify a little of what I’m learning to go through.

There is a typical body “graph” at doctor or physical therapy offices that want you to “show” them where you’re hurting.  Usually the patient circles an ankle, or maybe a spot on their back, or maybe both knees…

Welcome to the “where does it hurt” body graph for me…

On any one day I could hurt in one of these places, ten of the places or I could start the day hurting in one place and it moves to another.  On my very worse days, I could hurt in all of them all at once.

 

 

Here is where I hurt from Fibro…

Fibro2


Here is where I hurt from psoriatic arthritis….

PSA2

Put them together and I look like this….

Combined2

Add headaches, irritable bowel, methotrexate side effects, extreme fatigue and memory loss and I have quickly realized learning this new diagnosis with my fibromyalgia is going to make this one of the most challenging times in my life.  My pain is different, my energy is different, my body is different…oh yeah…and I also have an 8 month old son,a marriage, a full time job and life to lead.

I grieved for the “old me” when I was diagnosed with fibro.

I am grieving once again with the psoriatic.

Acceptance will come, but as I know from before that its going to take some time.  Now is the time for me to lean on family, friends and my stubbornness to get through.

 

 

  • Dave Matthews said at his Radio City show: “This is a song about where you’re about to trip and fall and smash your face but everything slows down to the point where you comprehend you’re gonna get hurt but it’s not enough time to do anything about it. And this song is about how not to forget about counting your blessings.”

“So Damn Lucky”

Everything’s different

My head in the clouds

I hit this corner
With my foot on the gas
I started sliding, I lose it
Everything’s different just like that

Oh my God, wait and see
What will soon become of me?
Frozen heart
Screaming wheels
Does that screaming come from me?
So damn lucky, when went on ahead
You say, you say
I see you later
I heard what you said a few minutes later
I’m sliding
Everything’s different, again

Oh my God, wait and see
What will soon become of me?
This frozen heart
Screaming wheels
But does that screaming come from me?
I’m dizzy from all this spinning
Now I’m thinking that you did all you could
When you said my love
Take it slowly
Ok, is what I said
Oh my God, wait and see
What will soon become of me?
Frozen heart
Screaming wheels
But does that screaming come from me?
Take me back, just before I was spinning
Take me back, just before I got dizzy
Take me back, amazing what a minute can do
Just like you
So, so, so, so, up, around, around, around
Amazing what a minute can do
Around, Around, Around
Ok….

 

Dear Baby A… October 6, 2014

Filed under: Uncategorized — jenfibrofighter @ 5:17 pm
Tags: ,

Dear Baby A,

Years from now if you ever read this blog there are a few things I want you to know. ..

I may go into detail in my blog that my pregnancy with you may have triggered my psoriatic arthritis.  I may mention that being up all night with you while you cut a tooth sent me into a fibro flare.  I may talk about sadness or frustrations I have with being a chronic pain Mommy (or as you call me-Mum Mum).  You may see me down.  You may see me sleep a lot.  You may see me feel pretty bad after Dad gives me my shot.

NONE of this is your fault.

If being pregnant with you caused pain-it is worth every ache and pain I’ve had-and will ever have.  You were the most amazing surprise to me and Daddy (or as you call him “Boof”), please don’t ever have guilt for my chronic illness!

I remember once when I was little MY mommy (your Mimi) got into a car accident.  She was in so much pain.  I felt so bad, my stomach ached for her. I couldn’t stand to see her hurting! I can’t even imagine what you’re going to feel since my pain is every day.   If your stomach starts to hurt for my pain-I promise you can make it SOO much better with just a hug or snuggle with me.  Play with me, sing to me, distract me from the bad so I can remember all the good there is with you.

I promise to try to never make you feel like any of this is your fault.  I promise to play, snuggle, sing, laugh and cry with you as much as I possibly can and I won’t let my chronic illnesses ever come before that time with you.

I promise to continue to educate myself on treatments and management so that I can have the most quality time with you as possible.

I promise to include you in my fight against chronic pain and I fully expect you to be one of my biggest supporters!  I want to teach you and I want you to pass down what you learn from me to help other chronic pain survivors!

I love you so much, don’t ever forget it.  If I’m having a bad day-please re-read this letter-None of this will ever be your fault.

LOVE YOU TO THE MOON AND BACK!

Mom

Aiden and Me

 

I Admit It…I’m Scared… September 24, 2014

PA Ribbon

I’m officially adding yellow and blue to my purple ribbon.   For those of you I’ve left hanging since my last post, I have been diagnosed with Psoriatic Arthritis.  My diagnosis of Fibromyalgia stays as well.  What took me so long to find out?  An uncomfortable follup up call from the first doctor I saw that lead me into wanting a second opinion.  I am now back with a rheumatologist who I feel will be open, honest and lead me in the right direction now that I’m fighting a brand new battle.  It was a harsh reminder of how much we as chronic pain patients have to advocate for ourselves.

To be as open and honest as possible, I’m really struggling with this daignosis.  After 8+ year s of Fibromyalgia I felt like I was finally figuring out how to balance the symtpoms and knew what I had to do to manage them.  I feel like I’m starting over and it’s completely disheartening.  The pain is different.  My body is different.  The possible outcomes of PA are different.  I’m having to learn my body and how to manage my life all over again.  It took me 8 years to figure out fibro.  I hope PA doesn’t take another 8.

Not familiar with PA?  Neither was I…here is a defintion from Mayoclinic.org to help out:

“Psoriatic arthritis is a form of arthritis that affects some people who have psoriasis — a condition that features red patches of skin topped with silvery scales. Most people develop psoriasis first and are later diagnosed with psoriatic arthritis, but the joint problems can sometimes begin before skin lesions appear.

Joint pain, stiffness and swelling are the main symptoms of psoriatic arthritis. They can affect any part of your body, including your fingertips and spine, and can range from relatively mild to severe. In both psoriasis and psoriatic arthritis, disease flares may alternate with periods of remission.

No cure for psoriatic arthritis exists, so the focus is on controlling symptoms and preventing damage to your joints. Without treatment, psoriatic arthritis may be disabling.”

I’m already struggling with one aspect of this diagnosis.  Almost everyone I’ve told says, “You have Psoriasis?”  I look at this in two ways….

The positive outlook on this question?  My rashes are hidden better than I thought.  Let’s face it.  Psoriasis isn’t cute and I’m glad it doesn’t show as much as I thought.

The negative?  When people ask a question to something you thought was obvious it makes me question the diagnosis…not because I don’t think it’s accurate but because years of having an invisible illness have scarred me.  I finally have something showing on the “outside” to prove my diagnosis and it isn’t showing as much as I thought.

As winter comes and my rashes get worse, I’m sure I’ll be more than happy to embrace the positive outlook.

My biggest struggle right now?  I don’t want to take the medicine.  I have been prescribed weekly methotrexate injections.  Here is a list of possible side effects from the medicine….


More common

  1. Black, tarry stools
  2. blood in the urine or stools
  3. bloody vomit
  4. diarrhea
  5. joint pain
  6. reddening of the skin
  7. sores in the mouth or lips
  8. stomach pain
  9. swelling of the feet or lower legs

Less common

  1. Back pain
  2. bleeding, blistering, burning, coldness, discoloration of the skin, feeling of pressure, hives, infection, inflammation, itching, lumps, numbness, pain, rash, redness, scarring, soreness, stinging, swelling, tenderness, tingling, or warmth at the injection site
  3. blurred vision
  4. confusion
  5. convulsions (seizures)
  6. cough or hoarseness
  7. dark urine
  8. dizziness
  9. drowsiness
  10. fever or chills
  11. headache
  12. lower back or side pain
  13. painful or difficult urination
  14. pinpoint red spots on the skin
  15. shortness of breath
  16. unusual bleeding or bruising
  17. unusual tiredness or weakness
  18. yellow eyes or skin

Sounds like a blast!  I’m dreading it. I actually decided to break down and cry instead of take the shot like I should have last night.  I’m scared of feeling sick for days.  I’m scared of not feeling well enough to spend time with baby A.  I’m scared I’ll lose my hair.

At the same time, I’m afraid of what might happen if I DON”T take it.  I’m terrified of what may happen to my hands and feet.  Will my hands look like this…?

PA Hands

Will I get what they call, “sausage toes”, like this…?

PA Feet

These are my feet today, I’m already seeing changes and I’m terrified.

 foot

All I can do is trust my doctor at this point and know if the methotrexate doesn’t work for me he will work to find me other options.  What I really want is for someone with psoriatic arthritis to tell me I’m doing the right thing.

So again, I’m back to the beginning.  I’m going to reach out to people with PA just like I did with Fibro.  I’m going to do my research just like I have with Fibro.  I’m going to continue exercising because I know without it the pain will take over.

I can do this…

I can do this….

I can do this…..

Right?

 

You’re “Big” Again!…You ran a 5K!…You May Not Have Fibro? August 26, 2014

Filed under: chronic pain,fibro flare,Fibromyalgia,Obesity and Fibromyalgia — jenfibrofighter @ 8:08 pm

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…

 

TIND24_01_00730_L TIND24_03_02454_L

 

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!

 

Explaining Fibro to Baby A… August 3, 2014

Filed under: chronic pain,Fibromyalgia,Uncategorized — jenfibrofighter @ 10:03 pm

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

 

Take A Nap!- Guest Blog July 22, 2014

Filed under: chronic pain,Fibromyalgia,Fibromyalgia and sleep problems — jenfibrofighter @ 8:20 pm

 

I am starting a series of guest blog posts from people who are close to me.  I asked my husband to blog about his perspective on my fibro and he focused on what happens when fibro fatigue sets in.  I’m sure this issue is even more of a concern since our little one has come along.  I always find it interesting to see my fibro through someone else’s eyes…

So here it is….guest blog number 1 from my one and only!…

 

Living with Fibro- well sort of

TAKE A NAP!!!

 

I know it bugs her to no end that she is tired and I will MAKE her take a nap.  I say this, because, as the past has shown if she doesn’t, being tired brings out She-Hulk.  A moody, sad sack of what should be my happy wife, is now replaced with this “monster” that nothing can calm this beast down.  And it isn’t just for a short period of time.  This will last an entire day, if it is not recognized and dealt with right away.  This “beast” cannot be controlled either.  You think everything seems to be calming down, the “beast” seems to start smiling and turning less “Green”, then…BAM; the cat hacks up a hairball, and the house starts shaking from the sounds the beast starts making again.

Believe it or not, this beast can be stopped before it completely turns.  Not by a lab full of scientists in some secret underground lab.  But an hour nap. She doesn’t have to sleep for an entire day, but an hour nap, and then some moving around to “restart” her system (not necessarily exercise; just moving around) and the monster can be avoided.

I am completely serious about this too!  Looking back, anytime we have ever had any sort of argument about anything that really was insignificant (and there have been some).  They all were after she mentioned she just didn’t sleep very well, or she was tired, and did not take a nap.

I know a lot of the time she feels guilty for taking a nap, because the baby kept me up all night.  I don’t have Fibro, I can recover.  I have had bouts with insomnia for as long as I really can remember.  Me, not getting a lot of sleep is definitely not anything new.  But her not getting enough sleep… Let’s just prevent this

 

 

She Hulk

 

“We’re going to use heat to induce pain on you”-My adventures in being a research study subject! July 17, 2014

Filed under: Uncategorized — jenfibrofighter @ 5:56 pm

Since I am constantly complaining about the lack of (known) research for fibromyalgia, you know I was super excited when I had the opportunity to actually be a subject in a research study!

The study is being conducted at Indiana State University. With the permission of Carolina Valencia, PT, PhD and Robert Vallandingham, LAT, ATC, who are conducting the study, I get to share the details of the study and my personal experience with each aspect of it…yay!

This research study focuses on “Effects of Light Brushing on Clinical Pain Intensity and Experimental Pain Sensitivity in Fibromyalgia Patients.” What a mouthful, right?

According to my consent paperwork, “The Purpose of the research study is to determine the effect of light brushing Graston technique on your pain caused by Fibromyalgia. The study will address whether this treatment option is able to decrease pain.” For those who are unfamiliar to Graston technique, you can find more about HERE, but here is a summary (Taken from GrastonTechnique.com:

 

                                              graston tools

 “The Graston Technique, originally developed by athletes, is changing the way clinicians — including physical and occupational therapists, hand therapists, chiropractors and athletic trainers — and patients view treatment of acute and chronic soft tissue injuries. Graston Technique® is an innovative, patented form of instrument-assisted soft tissue mobilization that enables clinicians to effectively break down scar tissue and fascial restrictions. The technique utilizes specially designed stainless steel instruments to specifically detect and effectively treat areas exhibiting soft tissue fibrosis or chronic inflammation.”

*On a side note, I have personally had the Graston Technique done in physical therapy and my opinion of it is as follows: Every time I get it done I wonder why the hell I asked for it. I’m not going to lie, it hurts but when it’s done I want more. In fact, I’m pretty sure the first time I got it done I wondered if the person who performed the procedure was mad at me. It’s definitely a “hurts so good” treatment. Because I’ve had Graston done, this study perked my interest even more, but I worried the potential pain of the procedure would make other subjects run for the door, but when the study states “light brushing”, that’s exactly what they meant. I’ll get to more of that later. The procedures for the study were the following:

1. I completed a series of questionnaires that included questions on how my pain affected my ability to do daily activities such as walk up stairs and work as well as questions involving how fibromyalgia affects me psychologically.

2. They tested my pain perception by on my forearms and the palm of my hand by inducing pain with a heat device that was placed on my arm (don’t worry; it’s set to automatically turn off before it would get to a “burning Point”). They started the heat until I very first felt pain, asking me to rate the pain each time, then they did pulses of heat/pain and asked me to rate the pain of each wave of heat, then they tested how high the heat could go before I asked them to stop and I would rate that pain.

3. I then had small, hair-like, filaments applied to three different spots on my back (all trigger points for fibro) and I was asked to tell them when I could or could not feel the filaments.

4. 45 second of VERY light Graston was done on those same spots (to be honest, I was disappointed it was so light…I wanted the “dig” of my previous Graston experiences.)

5. They then repeated the Filaments in the same spots, asking me when I could feel them.

6. And finally, all the heat pain perceptions tests were repeated as well as repeating some psychological questions. While the heat was uncomfortable, this study definitely didn’t leave me sore or unable to move my arms or hands. I had slight tingling through the afternoon, but nothing beyond that. Since this study is still active, I won’t know any results now, but I look forward to anything that is potentially published! I like to feel like I contributed something to the fibromyalgia community today in my own little way. It’s not as easy to be “involved” in fibro awareness as it is for other conditions. We don’t have “walks,” we rarely have fundraisers and our “month” is hardly recognized…this, in turn, makes it hard for us to have a “voice.” I feel like I raised my voice just a little bit today. If you’d like to get involved with a research study, check with your local universities, you never know what you may find!

If you are around the Indiana State University campus/area, you can also look into a future project that is currently planned to be rolled out in the fall. You may contact ISU in regards to fibromyalgia studies by contacting: Carolina Valencia, PT, PhD at rvallanding@sycamores.indstate.edu You can mention you were referred by my blog!

 

 
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