Photo Therapy

It’s been very silent around here. Honestly?  I’ve ran out of words. It’s the the same pain, the same frustrations. Doctors who don’t listen, weather flares….

I’m running out of ways to express it…
Until now. Recently someone suggested photography therapy and I’ve been giving it a try. It has been very good for me. 

I feel like this is finally a way to “show” my life with chronic pain. So…here are my introductory pictures. These pictures show my life…some struggles, joys, things I do to cope and the people who support me…just a little bit of “me” with a side of Chronic pain. 

Hopefully they tell the story I want them to…

   
    
    
    
    
    
    
   

 

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

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

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

The First Step Is Admitting You Have a Problem…

 

Thumb

 

On November 12th I decided to take a two week vacation from Facebook after reading the article, “7 Ways Facebook is Bad for Your Mental Health,” on Psychology Today, found here:

http://www.psychologytoday.com/blog/sex-murder-and-the-meaning-life/201404/7-ways-facebook-is-bad-your-mental-health

Depression and anxiety are some of the most common symptoms that accompany chronic pain illnesses.  So, by spending time on Facebook, was I making it worse?  Was I on a slippery slope where I was on Facebook, Facebook was causing me to be stressed or depressed and then, in turn, making my pain worse?

Well, it’s November 17th.  I obviously didn’t make it the full two weeks because, well, while it was beneficial for MULTIPLE reasons, it was hurting me (no pun intended) in other ways.

The 7 “reasons” found in the article and how I connected to them….

  1. It can make you feel like your life isn’t as cool as everyone else’s. Social psychologist Leon Festinger observed that people are naturally inclined to engage in social comparison. To answer a question like “Am I doing better or worse than average?” you need to check out other people like you. Facebook is a quick, effortless way to engage in social comparison, but with even one glance through your News Feed you might see pictures of your friends enjoying a mouth-watering dinner at Chez Panisse, or perhaps winning the Professor of the Year award at Yale University. Indeed, a study by Chou and Edge (2012) found that chronic Facebook users tend to think that other people lead happier lives than their own, leading them to feel that life is less fair.

Well, duh, of COURSE my life isn’t going to feel as “cool” as everyone else’s, right? I have chronic pain…I’m either limited or have to adjust my life around that pain, which in turn can make me feel more like an 80 year old lady—not so cool.  I can’t ride rollercoasters, or stay up late drinking with my girlfriends.  I can’t go on vacation or travel at the drop of a hat. I don’t like being the “Why me?” person and Facebook was only making that worse.

  1. It can lead you to envy your friends’ successes. Did cousin Annabelle announce a nice new promotion last month, a new car last week, and send a photo from her cruise vacation to Aruba this morning?  Not only can Facebook make you feel like you aren’t sharing in your friends’ happiness, but it can also make you feel envious of their happy lives. Buxmann and Krasnova (2013) have found that seeing others’ highlights on your News Feed can make you envious of friends’ travels, successes, and appearances. Additional findings suggest that the negative psychological impact of passively following others on Facebook is driven by the feelings of envy that stem from passively skimming your News Feed.

You better bet Chronic pain sufferers are envious of a pain free, or easier lives.  I was jealous of people who didn’t have to work when working full time is so exhausting for me on top of raising Baby A and dealing with chronic pain. I was envious watching people who “seem” to have it so easy.  I found myself drifting off into daydreams of what I “couldn’t” or “didn’t” have with my limitations…not good.

  1. It can lead to a sense of false consensus. Sit next to a friend while you each search for the same thing on Google. Eli Pariser, author of The Filter Bubble (2012), can promise you won’t see the same search results. Not only have your Internet searches grown more personalized, so have social networking sites. Facebook’s sorting function places posts higher in your News Feed if they’re from like-minded friends—which may distort your view of the world (Constine, 2012). This can lead you to believe that your favorite political candidate is a shoe-in for the upcoming election, even though many of your friends are saying otherwise…you just won’t hear them.

This is SO very true when researching chronic illnesses.  “This” treatment is “Obviously” the best.  “Your doctor is wrong”, so on and so forth.  I found myself in a very un-supportive, support group on Facebook.  When you’re lost in a new diagnosis and illness, it’s hard not to think you may be doing the wrong things to manage your illness, or to listen to what other patients have to say…maybe they have the “answer” to all of this (someone has to, right?).

  1. It can keep you in touch with people you’d really rather forget.  Want to know what your ex is up to? You can…and that might not be a good thing.Facebook stalking has made it harder to let go of past relationships. Does she seem as miserable as I am? Is that ambiguous post directed at me? Has she started dating that guy from trivia night? These questions might better remain unanswered; indeed, Marshall (2012) found that Facebook users who reported visiting their former partner’s page experienced disrupted post-breakup emotional recovery and higher levels of distress. Even if you still run into your ex in daily life, the effects of online surveillance were significantly worse than those of offline contact.

Yep.

  1. It can make you jealous of your current partner.  Facebook stalking doesn’t only apply to your ex.  Who is this Stacy LaRue, and why is she constantly “liking” my husband’s Facebook posts?   Krafsky and Krafsky, authors of Facebook and Your Marriage(2010), address many common concerns in relationships that stem from Facebook use. “Checking up on” your partner’s page can often lead to jealousy and even unwarranted suspicion, particularly if your husband’s exes frequently come into the picture. Krafsky and Krafsky recommend talking with your partner about behaviors that you both consider safe and trustworthy on Facebook, and setting boundaries where you don’t feel comfortable.

Not really a concern for me, but sometimes I worry that he is also envious of people with an “easier” life, or “easier” wife (no comments from the peanut gallery).

  1. It can reveal information you might not want to share with potential employers.  Do you really want a potential employer to know about how drunk you got at last week’s kegger…or the interesting wild night that followed with the girl in the blue bikini?  Peluchette and Karl (2010) found that 40% of users mention alcohol use on their Facebook page, and 20% mention sexual activities. We often think these posts are safe from prying eyes, but that might not be the case. While 89% of jobseekers use social networking sites, 37% of potential employers do, as well—and are actively looking into their potential hires (Smith, 2013). If you’re on the job market, make sure to check your privacy settings and restrict any risqué content to “Friends Only”, if you don’t wish to delete it entirely.

I worried about this a lot when I was teaching Zumba.  I worried that my employers wouldn’t think I was capable, or students would think I wouldn’t be very hard or I wouldn’t be any fun. 

  1. It can become addictive.  Think society’s most common addictive substances are coffee, cigarettes, and alcohol? Think again. The DSM-V (Diagnostic and Statistical Manual) includes a new diagnosis that has stirred controversy: a series of items gauging Internet Addiction. Since then, Facebook addiction has gathered attention from both popular media and empirical journals, leading to the creation of a Facebook addiction scale (Paddock, 2012; see below for items). To explore the seriousness of this addiction, Hofmann and colleagues (2012) randomly texted participants over the course of a week to ask what they most desired at that particular moment. They found that among their participants, social media use was craved even more than tobacco and alcohol.

I was fully, 100% addicted. Yep. 

 

So Facebook was OBVIOUSLY bad for me in a lot of ways, but at the same time, I missed the things that WERE good for me.

I missed seeing pictures of my family.  I missed sharing Baby A with them from so far away.  I missed having an “escape from reality” after a few days break when I realized that Facebook was FAR from reality. 

So let’s look at this again….

  1. It can make you feel like your life isn’t as cool as everyone else’s. 

My life only needs to be as “cool” as I want it to be, based off what I can do, have the energy, and WANT to do because I WANT to, not because it’s necessarily “cool” for everyone. Plus, some 80+ year old women ARE cool…like Betty White…If I’m half as cool as her now, at 33, then I consider myself pretty damn awesome.

Betty white

  1. It can lead you to envy your friends’ successes.

I am successful.  I shouldn’t be jealous of people who don’t have to work or those who seem to have things come easily.  I should be proud I still CAN do all of this for the time being.  I’ve got a lot to handle-People should be envious of my strength, right? 😉

  1. It can lead to a sense of false consensus. 

I have deleted all of my “support” groups but one, who I truly feel are filed with people who are kind, genuine and still have the pursuit of being active and lead a full life. I am the only one who will find the best treatment for me.

  1. It can keep you in touch with people you’d really rather forget.  

“Are you sure you which to “Un-friend” this person”…Why yes, Facebook, I’m sure.  My friend list is now very small.  I like that.

  1. It can make you jealous of your current partner.  

I’m not sure my fear of my hubby having an “easier” wife will ever go away, but spending my time sulking over Facebook envies obviously isn’t me being the supportive wife I can be.

  1. It can reveal information you might not want to share with potential employers.  

I’ve got the best co-workers and am blessed to work in a PT clinic where they have sympathy for pain.

  1. It can become addictive.  

No question, I’m cutting back.  There are lots of reason I became very addicted (especially last year during a really rough time) and I have to forgive myself for that and understand at THAT point in my life Facebook actually helped me get through by staying in touch with people, but now I have to continue to realize I don’t need to crutch anymore.

 

I worry that I’m not the only chronic pain patient who has allowed social media to become a crutch to stay inside and stay away from actual human interaction.  I worry that it is causing more isolation and less activity for those who need it the most.  I can only hope that maybe someone else with chronic pain will evaluate their use of social media too.  Is it helping, or “hurting?”

 

Sorry You Asked?

Methotrexate: A disease-modifying antirheumatic drug (DMARD) that is thought to slow the progression of psoriatic arthritis and save the joints and other tissues from permanent damage.

 

 

dog

 

AKA:  The bane of my existence.

Many people have been asking me how my injections are going…

Well….

My swelling in “some” of my joints has gone down.  My toes look normal again, although I’m still struggling with my fingers, feet and knees.  The stomach upset wasn’t nearly as bad as I had anticipated it would be.  I have a few days of upset stomach, but nothing unbearable.

The fatigue on other hand?  Killer.  I feel like I’ve run a marathon just getting out of bed.  Sunday is usually spent napping and Monday mornings are usually filled with pumping myself full of caffeine to make it through my work day.  It sucks.  I feel like it takes a day away from my son and my family.  I lose a day each week and its incredibly frustrating.  We cram most of our plans in on Saturday to allow me a day to rest.  I know if I try to push through and not nap and rest the rest of my week will be spent recovering.  It’s an awful balancing act right now.   I hate the time I’m losing.

And speaking of losing…

I’ve also started to lose quite a bit of my hair.  YES!  I AM taking the folic acid, biotin, and other vitamins suggested to help with the side effects….It’s still falling out.  Unfortunately, I didn’t have much to spare from the beginning and I worry I’m going to end up with bald spots.

So why am I taking it?  Because the more I learn about psoriatic the more I discover if you don’t treat symptoms early, there really isn’t much you can do to avoid permanent damage.

As I researched methotrexate further, I found out it is a chemotherapy drug to treat cancers such as breast, head and neck, lung, stomach, and esophagus cancers. Acute lymphoblastic leukemia (ALL), sarcomas, non-Hodgkin’s lymphoma (NHL), gestational trophoblastic cancer, and mycosis (www.chemocare.com)-Although arthritis patients receive MUCH lower dose.

 

*I would like to give the up-most respect to cancer patients using this drug.  I can only imagine what a higher dose may do if my small dose makes me feel so wiped out! *

 

The most frustrating part….

 

It could be 4-6 months before I know if it’s working for me.  Only time will tell, and anyone who knows me can tell you I’m not a very patient person.  It may not even be the right drug for me and all of this would have been for nothing.

 elbow

Also…my psoriasis is on fire this week which is rubbing salt in the wound a little bit.  A mixture of freezing weather and stress are making my elbows very colorful.

 

Right now I have to make sure to thank my husband for taking over on Sundays and understanding that we have to take that day “off” from everything to get by.  Hopefully it won’t always be like this as time goes on-or as my body adjusts…here’s to hoping anyway.

 

 

 

 

 

 

So Damn Lucky…

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….

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