Every Race Is An Opportunity To Measure Yourself Against Your Own Potential

After weeks of training… 6 a.m. swims, night swims, open water swims, diet and dryland my race finally came.

Sunday I completed the Poseidon Swim Challenge in Indianapolis through the White Water State Park Canal.  It was a 2K swim, over twice the distance of any other race I have ever done.  Race morning I was nervous, but felt prepared.  I had trained hard and knew I could complete the distance, but I wanted to do it well.

Just as my nerves were getting the best of me, I arrived at registration where I chatted with one of my teammates that attended the swim practices I coached.  For some reason, just that little chat calmed me down, no more nerves, just ready to go!

We walked a little over a mile to get to the race start.  The walk was a good warm up for me to get my body going (not easy with arthritis and fibro) and I took mental snap shots of landmarks along the race path so I knew how far I had gone while I was swimming.

I would love to say that I was able to push my chronic pain issues aside and say the race felt great, but I would be telling a huge lie.  The first part of the race I was distracted.  It was a mass start and I had to fight my way through the crowd.  People in front, to the sides, to the back…it felt like people were everywhere.  A few participants couldn’t handle the intensity of the start and I watched some stop, and heard some even forfeited the race and go out!

canal1

 Because it was such a fight to see where I was going, it took a lot of sighting!  Sighting is an open water technique used to see where the heck you are going!  Swimming in open water is like swimming into a green wall.  There is no black line like on the bottom of the pool, no wall to reach for, no turns.  Sighting allows you to barely lift your head above the surface of the water to find your direction.

Hard to tell, but I’m sighting here:

sighting

With sighting comes a slight arch of your back.  While I had been practicing drills for sighting in my practices (also known as Tarzan drill…also known as if you coach, be prepared to hear some moans and groans when you have your swimmers do it!), my back gave up quickly.  Looking back on it, my back was mostly likely struggling from sleeping in a hotel bed the night before.  Only those with chronic pain can understand the chaos an unfamiliar/different padded/harder/softer bed/pillow, etc. can bring to your body.  My back pain really set in when my distraction was gone and I found my way out of the pack.

I felt pretty steady through the middle of the race, and then towards the end I met my swimming match.  A man from the 60+ age group who challenged me for the last, at least, 400-500 yards.  Don’t let the age fool you, he was good.  If I hadn’t managed to meet up with this man mid race, I’m not sure I would have done as well as I did.  He helped me keep pace, he kept me from slacking, and…HOLY COW…did he give me a race at the very end.

canal2

This was a quick realization for me at the moment the final race between us began.  I realized that because of my pain issues, my immediate instinct is to hold back.  I worry about over-training, becoming over tired.  I worry about pushing too hard….not knowing what exactly my body is going to do to me in response.  But then there is the competitive side of me that will never die.  I couldn’t hold back if I wanted to keep up, if I wanted to beat him, if I wanted to actually utilize all the training I had gone through.  I have to realize that when it comes to some things in life, I can’t be bogged down by the fear of pain.  I’m going to have pain.  Period.  Always.  It’s up to me to decide when I want to risk dealing with the possibility of a little “extra” pain in order to do the things in life that I want to do.

As much as I am afraid of the pain, I am more frightened by the idea that the fear of pain will scare me away from doing…well…anything!

The final results of the race?  Overall 36th out of 100, 2nd in the 30-34 age group and 4th in the 30-39.

I’m proud of those results, especially considering I’ve only been back to swim training for less than a year…oh…and of course having a baby and getting psoriatic arthritis.

…. I’m already searching for my next race!

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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

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.

Just Keep Swimming…

pool1

I was a competitive swimmer for many years.  I made it through 6 days a week practices morning AND afternoon, 5:00am practices, practices in the middle of winter in a pool with no heat, three hour “special Practices”, meets twice a week, frozen swimsuits, first place, last place, false starts, and personal records-some broken and some not broken.

I loved it all.

I’ve recently been given the opportunity to get back in the water.  Not only to swim, but to coach for a local Triathlon team, Illiana Multisport…check out their website here: http://www.illianamultisport.org/. It’s been great putting on a swim cap and goggles again.  I’m hoping it will also be good for my pain, as I’ve been struggling to find a workout since Baby A was born that doesn’t send me into a swollen, miserable arthritis flare.  It was an opportunity given to me by a friend who couldn’t have had better timing.  Just the week before I had (another) breakdown with my husband about my frustrations with getting in shape again.  I told him the only thing I think I could do was swim, at least twice a week , but I would have to learn how to motivate myself on my own …and then BOOM…the following week I’m asked to join!  Team motivation was just what I needed.

The practices have been great.  The team has been friendly and I admire these athletes and their determination, commitment and dedication to completing (what I consider) very hard races/Triathlons.

And then…well…I caught myself doing something unexpected.  I realized that (in my head) the people I’ve been coaching are athletes and I’m just guiding them along.  I realized my chronic pain illnesses are mentally keeping me from considering myself an athlete.  Almost immediately, there was a block in my head that told me, with my “defective” body, that being an athlete is something I just can’t be.

I can’t be an athlete if it takes me two days to recover from a hard workout!

I can’t be an athlete if I limp into practice from a swollen arthritis-ridden knee.

I can’t be an athlete who swims a practice and then goes home and gives themselves a shot to control their Illness.

It was a harsh realization of how much these chronic pain conditions change your thinking…

Into thinking you’re less of a person

Into thinking you’re incapable of things.

Into thinking you “CAN”T”.

I never thought I was this person-and it was a bitter pill to swallow when I realized I was thinking this way…or even worse…that I didn’t see anything wrong with me thinking this way.

So I jumped in the water and had a NEW realization.

I wasn’t so bad.

I was only a few paces behind the “top” swimmers in the pool.  I survived the workout, and most importantly, enjoyed it.  And I realized how much I missed it and how much I loved being in the water.

The “athlete” I always thought I “used” to be was still in me…just in a different form.

While doing Zumba, I never considered myself an “athlete.”  I was a “dancer.”  I had a way around calling myself an athlete officially…even though, by all rights, they most definitely are!

I’m angry with myself for not allowing me to see myself this way.

I’ll have to work harder than some.

I won’t have to work as hard as others.

My body will fight me and I will have fight back.

I’ll have to find my limits.

I will practice to my body’s ability and improve my skills at swimming…which in many ways is a simple definition of…an athlete!

I will stop defining myself by what I “can’t” do.

“Just Keep Swimming.  Just Keep Swimming.  Just Keep Swimming, Swimming Swimming.”

dori rocks

Sometimes You Just Need a Fork….

Spoons

What is the obsession with chronic pain patients and spoons anyway?

Well…I can tell you…

Thank you to Christine Miserandino for finding a way to explain chronic pain conditions to others.

Here is just a little excerpt about the spoon theory taken from http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

(P.S. I full recommend reading the entire article to get the full impact of her story.)

I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.

Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.

 

She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?

 

I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.

 

I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.

 

I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.

 

We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.

 

When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.”

 

While I think this theory is wonderful in its ability to bring an understanding to how chronic pain patients have to manage their days…and their lives for that matter, I have a feeling a lot of chronic pain patients are like me, and waste their spoons pretty quickly and then try not to spend the rest of the evening with guilt or regret.

I look at it this way…As long as I waste the spoon on something good I can forgive myself…

But I definitely need to stop wasting them on things like trying to be the perfect mother, trying to keep the house spotless every day, worrying about work when I’m not there, blah blah blah…all those things that don’t require my energy.

And when it comes down to it…

Sometimes you just need a fork…   Fork

Maybe the cost of a fork is three spoons.

Have you ever tried to eat a salad with a spoon?  I’m sure it would end with a lap full of lettuce and dressing stains.

Have you ever tried to keep up with a 10 month old while trying to conserve energy at the same time?

Would you ever try to get someone’s attention by poking them with a spoon?

I bet a fork would be way more effective to poke a Doctor who isn’t paying attention to your symptoms or is leading you in the wrong direction.

Sometimes you just need a knife…Knife

Maybe the cost of a knife is 5 spoons…

You can’t cut a steak with a spoon and let’s face it, steak is one of the most delicious, wonderful foods ever!

Spending the holidays traveling to see family and spend time with loved-ones is wonderful too…even if it costs me days-worth of spoons.

Have you ever tried to cut something with a spoon?

Have you ever tried to work out after, or during, a bad flare-where it feels like your body is being cut my knives?  It hurts, but you know you have to do it or you may not regenerate your spoons for the rest of the week.

*I don’t recommend poking your Doctor with a knife…reserve that only for a knife.  While Doctor’s are frustrating, having the wrong one isn’t worth the trade in for the cost of a knife.- and the fork will probably get you in a lot less trouble**

I think that chronic pain patients learn to appreciate the little things you do when you are ONLY given a spoon…

A big bowl of ice cream.

Ice cream

Help opening a jar when arthritis is too bad.

Jar-Spoon

Watching my son taste a flavor for the first time in his life on his little spoon.

baby spoon

Stirring the perfect flavor of creamer into the first cup of coffee for the day.

 coffee

It’s a constant trade in…and everyday has a different table setting.

Table Setting

From a Mother to a Daughter-Guest Blog

Now that you are a mother, (and a very good one!!), Jen, you are acutely aware of the powerful protective “mother bear and cub” impulse you now experience.

Anything that would harm your child, or create pain for your child, is met inside you with a passion to make it go away, fix it, or kick it to the curb!

That feeling never goes away!

This terrible diagnosis has been a undefeatable foe, and I hate it!

Now you have an additional adversary that I have no control over, Psoriatic Arthritis! And, OMG the medications, and their side effects are absolutely terrifying!

You have met the enemy head on! You fight it; being as fit as your pain allows, through therapy, (when the pain needs an extra push to subside), by avoiding excessive medicating, and by being aware of your body’s signals that tells you when rest is an absolute necessity.

My biggest fear – that you will grow too tired to fight.

So I pray. I pray for your strength. I pray for your endurance. But most of all, I pray for a cure!

So, all I can do to help is listen when you need me to.  However, I suspect that you internalize a lot of your pain and feelings, for fear that you talk about it too much.

Thank God for Trent, (God bless him), who gets to hear it all!

So, daughter, that’s how I feel. You are loved even more than Love you to the moon can ever describe!

Love,

Mom

Dear Baby A…

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

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