Addicted to Racing!

water swim

I’m officially addicted to racing.

This past weekend I completed my first swim in a relay team in a triathlon, “Thunder in the Valley.”

TeamTriMedals

I have to start out by bragging that our relay team got second out of all the teams!  I had so much fun competing with the two others on my team, and so proud of their individual races.

The swim was definitely a challenge. It was my first time racing in open water.  I learned how to swim in a pond and spent many hours in the water in lake Michigan growing up, but those experiences still didn’t prepare for the challenge.  Once you get past the plant life that tangles in your stroke, you then hit deeper (colder) water that you cannot see through.  It was like swimming into a green wall.  I also found out that the wetsuit makes me feel like I’m getting suffocated, which promptly caused a panic attack in a practice before the race, which promptly made me choose not to wear it race day!

That being said, the race felt pretty good.   I learned so much about open water swimming and the true competitiveness of Triathletes.  They were, by no means, polite in the water.  They pushed, they elbowed, they swam over me, I pushed backed, kicked a few pretty hard ….they are out to win…aka, my kind of people!

I was proud of myself.  I was proud I finished without stopping or switching to another stroke.  I was proud of my time.  I was happy I wasn’t too hard on myself for things I could have done better.  Most of all, I was proud I didn’t question my ability to keep up with the athletes around me because I suffer from chronic pain conditions.

While my team did great, and I was happy with my swim, I honestly think one of the most amazing parts of the day was watching the members of the triathlon team, people I’ve coached, compete…and compete well.  I’m not sure if some of the team members realize I was not only checking my swim time, but theirs.  I remember where they started, and could see improved times. One individual, in particular, came out of the swim with a smile on her face, completely confident and strong.  I love to think how I may have played a part in that strong swim.  While my body will probably never let me complete in a “full” triathlon, it’s amazing to become a little part of someone else’s race by coaching.

I’m in awe of the amazing athletes triathletes are. I was pooped from JUST the swim, I can’t imagine doing all three events!

Team

With every activity that exerts that much energy, I definitely had a hard time recovering, which isn’t an uncommon problem with chronic pain.  But the most important part I’d like to point out?  I DID eventually recover, the race was a blast, my team was awesome and I can’t wait for the next!

So happy a certain someone talked me into joining this crazy tri world!

meandNicole

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This Is An ANGRY Blog….

Anger

If you don’t want to hear anger, frustration and defeat, then I would not read this blog…

This past few weeks/months have been a disappointment for many reasons and I’m doing my best to not roll over and let my fibro and PSA win.

First, the most frustrating part of my life at the moment….

I am going on almost or over (never sure with chronic pain exactly when something starts) three months of having intense pain directly on my spine between my shoulder blades.  My Rheumatologist pushed muscle relaxers and pain medication.  Not happy with that decision, I went to my family doctor who ordered an X-Ray and MRI, both of which have come back “normal.”

Hearing the “your test was normal” diagnosis as a chronic pain patient is a frustration I can’t seem to convey to “regular” people.  Do I want something to be “wrong”?  No.  But do I want a valid reason for this pain?  YES.  All I want is for my pain to be something a doctor sees as “real” and “treatable”  not…oh… “She has chronic pain so we don’t really have to take any of her pains seriously.”  I wonder, just wonder, if I had walked into any other Doctor’s office that had never seen me before, who didn’t know what I suffer from, would more steps be taken to find a source of this pain?  I know the difference between my fibro pain, I’m learning my arthritis pain…and this pain just doesn’t feel like either of them.  Could it be?  Maybe.  Am I ready to accept that now?  No…not until I take a few more proactive steps.

There is nothing “normal” about chronic pain conditions.  Why should a test result make me feel like I should be normal because IT said so?  Every time I get a test back that shows “nothing wrong” I feel like I don’t have the right, or the justification to say that I hurt, or that something is wrong.  I’m so tired of feeling this way.  I’m tired of feeling the need to be overly strong for other people, or hide what I have from other people.  I don’t feel like I’m “allowed” to be “sick.”  Which makes me feel unimportant, and makes me feel belittled by my conditions.  Yes, I’m having a pity part, but I feel like it’s justified.

Now to the second most angering, frustrating and defeating part of my life in the last few weeks?  My epic fail at my gofundme efforts to raise money for NfmCPA, (http://www.fmcpaware.org).  I know, I know, it’s been less than a week, but I can definitely say the response has been less than astounding.  Of my $500 goal, I have raised….wait for it….$40.00.

Realistically, I understand there are many reasons people didn’t donate.  Budget at home is too tight right now.  They are getting bombarded with gofundme requests and mine got lost in the cracks.  So on and so forth….

But I can’t help but feel defeated that  it is because of my cause.

If I had asked for money for cancer research, would I have had the same response? Here is some perspective.

Approximately 1 in 8 women will suffer from breast cancer (I’m using breast cancer as example because there is a great track record for donations made to research and treatment).  It’s estimated 90 percent (of stage one) breast cancer patients will survive (ww5.komen.org).  THEY WILL BE A SURVIVOR.

Approximately 1 in 50 women will suffer from fibromyalgia.  100% of fibromyalgia patients are not cured.  We are considered survivors for learning to live with this condition, not for beating it.  A lot of people probably think this is not a fair comparison as most chronic pain conditions don’t come with the risk of death, as cancer does.  But isn’t it funny how the definition and expectation of the word “survivor” changes from condition to condition.

(Please don’t get me wrong…I’m not trying to down-play breast cancer by any means.  My mom and mother in law are both survivors and I am forever grateful for donations made to their cause that helped with research or treatment that helped them to survive.)

What if had been raising money for a school fundraiser for Baby A?  Every year we support our own, or someone else’s, child by buying overpriced candy tins, or wrapping paper.  We buy these things without hesitation, but there seems to be some hesitation to my cause.

If people matched their donation to me with what they paid for Girl Scout cookies I probably could have met my goal in a few days.

I understand these fundraisers go for great things too.  The Girl Scout cookies support “girl power” and a great program for girls and I love that.  I know the overpriced candy tins and wrapping paper help support schools that are probably inadequately funded.

I get this.

I understand.

But how can I help but feel upstaged by a cookie?

To take it to the over-dramatic level….why is my pain (and the pain of everyone else who suffers from chronic pain conditions) not important enough for a small donation.  Why do people support thin mints, but aren’t supporting research that could allow me, and so many others, to FINALLY live a life without pain?

People are easily frustrated with chronic pain patients, as we are so often judged as being complainers.  We complain about the pain, we complain we feel as invisible as our illnesses, we feel ignored and brushed off by many in the medical community.  We don’t feel like people want to help us, to a certain degree.

The lack of interest in my fundraiser dug that disappointment in a little deeper for me.  And while I usually try to have a “fighter” attitude about things like this (nobody going to get me down), I have to admit I’m disappointed.

I am leaving the fundraiser open until the end of the month, and then gladly donating what I have to my cause.  If it’s still only $40, then I hope that is the magic $40 that makes a difference.

Not one to take failure lightly, I felt the need to redeem myself.

So for Fibromyalgia Awareness 2015, I decided to do something else.  I figured all of this frustration I’m letting out in this blog is usually dumped on my husband’s lap.  While I know he handles it well, I know he wishes he could talk to someone who truly understands what it is like to care for someone with chronic pain.  So, with his help, he and I are staring the “Chronic Pain Spouses” support group on Facebook.  Please let your husbands/wives/partners know about this page.  Search for it by its name.  I think it’s just as important for our loved ones to have a place for support.  This is a private group where they can vent, get advice and get understanding without judgement.

If we can’t give money, we can give support.

If you made it through the end of this negativity, thank you.  Thank you for listening to me when I’m at a low point and I need ears the most.

Happy Fibromyalgia Awareness Day!

I am a chronic pain Warrior.

In support of Fibromyalgia Awareness Day 2015 I have started a “GoFundMe” page to raise funds for Fibromyalgia and Chronic Pain!
“As an individual who suffers from both Fibromyalgia and Psoriatic Arthritis I understand the importance in research for understanding of all chronic pain conditions.  Funds raised will be donated to NfmCPA (http://www.fmcpaware.org)National Fibromyalgia & Chronic Pain Association.

This non-for-profit organization does so much for the chronic pain community including research, resources and support for chronic pain patients as well as being a HUGE advocate for chronic pain patients, who often-time feel they have little support and understanding.

Not only will your donation support this great association, but it will also show your support for those suffering with chronic pain.  Your donation is a small way to show you care, and show  you believe in these, often times, invisible conditions.

Thank you so much for your support.”

Please find my GoFundMe : http://www.gofundme.com/fibroandchronicpai

Time Is Not Measured By Clocks But By Moments…

So…

What has been going on since February you ask?

Hopefully I can remember everything I’ve been wanting to write in the past few months…

First subject?…IT’S FIBROMYALGIA AWARENCE MONTH….GET THAT PURPLE READY FOR MAY 12TH!

I’m trying to think of something I can do to represent this year and so far I’m drawing a blank.

My first year I asked people to wear purple and send me their pictures, (See the pictures here! ).

Second year I won my Fibromyalgia video contest. (See the video here).

The next year I’m pretty sure was my fibro ribbon tattoo and fibro ribbon pedicure.

Fibrotoes

The next year was my Fibro ribbon garden,

FibroGarden

and then last year was a photo with my son…

Me and Aiden

I’ve only got 12 days left to figure out what to do this year!  Ideas anyone?

On to the next subject…Treatments…

If you remember a LOOONNGGG time ago I wrote a Blog about “Cupping Therapy”.  Recently, the clinicians in the Physical Therapy clinic where I work got certified to do this technique!  Ok…well, sort of…It’s not the ancient Chinese medicine called “cupping” but “myofascial decompression.”  The difference?  No scary fire technique or alcohol like what was mentioned in my blog, but uses suction cups instead.  The hickies?  Well those were definally still part of the process.

Cupping

As far as results?  I liked it!  I think it really relaxed some super tight areas (those awful “knots”) in my back and it was well worth being “spotty” for a few days.  The patients in our clinic also seem to respond well to it.  Does it hurt?  Sort of….just a feeling of tightness, as oppossed to “pain”.

Recently my PT who does dry needling returned from her maternity leave!  Believe or not, I could not WAIT to get some needles dug into my knees again!   I genuinely have not had anything work as well as it does on my knees.  Did you miss my blog about dry needling?  Find it here!

I am also currently back in formal Physical Therapy for a very painful spot on my spine.  X-ray was clear, possibly looking at an MRI.  I have no idea what is going on with it other than it hurts…bad.  Could be fibro, could be arthritis, could be something else.  I don’t know, but I’m over it. It hurts to lift my child…I don’t like that.

I’m still doing the Humira shots…well…correction…my husband is giving me the shots while I lay on the bed with a pillow over my face so I can’t see what is going on.  One of these days I’ll be brave enough to do it on my own…I think.

What else is going on?

I’m 23 days away from my first triathlon.  I’m on a team where I will be swimming, and another will be biking and another will be running.  I’m looking forward to it.  It’s a new challenge for me.  I’ve never swam an open water race and I’m excited to do something new.  My swimming has improved greatly since the training season started.  It’s been good for me, physically and mentally.  I have one more week of coaching at the pool.  I’ll miss seeing my group every week.  They are great, amazing and funny people who motivate me every practice.  After I get my first race done I’m preparing to train and swim in a 2 mile canal swim through Indianapolis.  I’ve never been a “distance” swimmer and I’m a little nervous about training for it, but I’m SUPER excited for the race!

I have found out, however, that putting on a wet suit is a workout in itself.  Holy. Cow.

Wet Suit

My baby A turned one.

Babybaby                                                    babyA1

I can’t believe how fast he grows and it’s amazing to see him learn something new every day.  I know everyone is partial to their own kid, but I seriously have one of the cutest little stinkers ever.  I love watching him play, and “read” himself a book, and see how kind hearted and loving he is.  My favorite part of the day is sitting in a chair with him and resting my cheek on the top of his warm, fuzzy head.  I recently got a whole week off work with him.  We went to the park, had an ice cream date, took walks, had a visit with family and friends, and went to a music program at the library where he learned the Hokey Pokey and LOVED it.

Park-Aiden

He wore me out!

It was worth it.