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…

   
    
    
    
    
    
    
   

 

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!

 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:

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.

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 36^th out of 100, 2^nd in the 30-34 age group and 4^th 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!

Addicted to Racing!

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.”

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!

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!

This Is An ANGRY Blog….

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 12^TH!

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.

The next year was my Fibro ribbon garden,

and then last year was a photo with my son…

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.

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.

My baby A turned one.

                                                    

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.

He wore me out!

It was worth it.

Balance and Stigma…

Having a life with Fibromyalgia and Psoriatic Arthritis is a life spent trying to find balance.

I have to balance the amount of energy I spend at work and at home-while remembering to balance enough to get in some exercise- while trying not to neglect my son or husband.

I have to balance getting enough sleep-and finding time to catch up when I don’t.

I have to balance what I eat.  I can’t allow severe obesity to creep back into my life and cause MORE damage to my joints.

I have to balance the energy to keep up with a home.  Cleaning, paying bills and figuring out budgets.

With the help of my husband-I’m doing “Ok” finding the balance for all the things I just mentioned, but I’m failing miserably at finding balance with something else…

Balancing how much I verbalize what is “really” going on with my body.

What do I mean by this?

When do I say how I’m really feeling?  At what point does it stop being an intention of being informative and turns into (what seems to be) constant complaining?

I can’t figure this out.

I know that I “shouldn’t” mention how I’m feeling every second of every day because, let’s face it…that would get very depressing for me and the person listening.  But how much is too much?

I have a tendency to hold it in and then it all comes flooding out in an ugly cry, with me babbling about pain, making no sense, overwhelmed by all of it.

I have a tendency to “complain” more to certain people.  For example…I mention my pain a lot at work.  Not because I work in a PT clinic and I want them to “fix” me (although, maybe “sometimes” I don’t turn down treatment), but because they are “pain” people.  That’s what they do.  I feel like they have more patience for pain than other people do.  I also complain more to my husband.  He’s the only one who truly sees the bad days and the ugliness they entail.  But these few people can’t carry the load and burden of being the only people I talk to when I’m hurting.  I’m glad they’re there, but this isn’t really a fair balance for them.

Then there are people I’m afraid to mention my pain to at all, or people I try to act “strong” for.  My mother is a prime example.  As much as I’m sure she wants to understand how I’m feeling, the ugly truth of what it is “really like” is something I’m sure a mother never wants to see her child go through.  While I am able to break down into a limped, tear-filled, hobble of a walk with my husband, the thought of having my mother see me this way breaks my heart.  But yet, I want her to understand.  She is my biggest cheerleader and  one of my biggest supporters in educating everyone about chronic pain so how do I  break down this fear and find a balance between teaching her, but accepting she’s going to hurt for me when I do?

I know I’m trying to be too “strong” for Baby A some days when my body has had enough…but at the same time, will my husband understand if I “complain”, yet another night, and have to ask him to take over?  I know he would, but it doesn’t make it any easier to ask.  Will Baby A understand when he’s not “Baby” A any longer?

I don’t want to “complain” to other people working out, or exercising because I don’t want to seem weak, but all at the same time, I want people to understand why working out is such a challenge for me and why some days I can do it, and some days I can’t.

No balance.

I think a lot of this stems from a stigma chronic pain patients have for being whiney, for doing nothing but complain about their pain.  People stop listening to us, when in all honesty; we’re desperate for someone to keep listening so they can maybe understand how much these conditions truly consume our lives.

I don’t believe it does the mind (or body) good to talk about pain ALL the time, but I think it’s just as damaging to feel like I can’t.

Sometimes I just need to tell someone why I look tired.  Why I may be quiet.  Why I may be taking the elevator instead of the stairs.  Just getting it off my chest is mentally more therapeutic than trying to be strong.

Please be more patient with us.  If someone with chronic pain is “complaining” about their pain, they may just be looking for some understanding, a new ear to relieve the burden from the ear they usually talk to.  We are trying to get others to genuinely understanding what we’re going through, and as much as people don’t want to hear “complaining,”-to chronic pain patients, it’s not complaining-it’s our life…and it’s unfair that we have to balance how we talk about our lives.

Just Keep Swimming…

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.”

Sometimes You Just Need a Fork….

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…   

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…

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.

Help opening a jar when arthritis is too bad.

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

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

 

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

Needles, Needles, Needles…

Working in a physical therapy clinic has educated me about chronic pain more than I imagined.  I’ve learned about, and been able to try treatments I never knew even existed for chronic pain.  Most recent of these treatments?

Functional dry needling…

Here is a brief description of the process and purpose of this treatment, from www.kinetacore.com

“Dry Needling is a general term for a therapeutic treatment procedure that involves multiple advances of a filament needle into the muscle in the area of the body which produces pain and typically contains a trigger point. There is no injectable solution and typically the needle that is used is very thin. Most patients will not even feel the needle penetrate the skin, but once it advances into the muscle, the discomfort can vary from patient to patient. Usually a healthy muscle feels very little discomfort upon insertion of the needle; however, if the muscle is sensitive and shortened or contains active trigger points, the subject may feel a sensation much like a muscle cramp, often referred to as a ‘twitch response”.

The twitch response also has a biochemical characteristic to it which likely affects the reaction of the muscle, symptoms and response of the tissue. Along with the health of the tissue, the expertise of the practitioner can also attribute to the variation of discomfort and outcome. The patient may only feel the cramping sensation locally or they may feel a referral of pain or similar symptoms for which they are seeking treatment. A reproduction of their pain can be a helpful diagnostic indicator of the cause of the symptoms. Patients soon learn to recognize and even welcome this sensation, as it results in deactivating the trigger point, reducing pain and restoring normal length and function of the involved muscle. Typically, positive results are apparent within 2-4 treatment sessions but can vary depending on the cause and duration of the symptoms, overall health of the patient, and experience level of the practitioner.

Dry needling is an effective treatment for acute and chronic pain, rehabilitation from injury, and even pain and injury prevention, with very few side effects. This technique is unequaled in finding and eliminating neuromuscular dysfunction that leads to pain and functional deficits.”

Sound scary?  I agree!

Before I would even attempt this, I watched one of my co-workers go through the treatment.  I knew since I would more than likely be getting it done on my back or neck and wouldn’t be able to see, I wanted to see what was actually going on first to try to calm my nerves.  In hindsight, I should have just gone into it blind.

My co-worker was getting a place on his arm treated.  Basically it looks like this…

Gloves on…

Alcohol on…

Needle in…

Dig around with needle…

Dig around…

Watch my co-worker wiggle and flinch…

Electrical stimulation added to the needle to make it vibrate while it’s still in…

Co-worker says it feels good…

Needle out…

Done.

Of course, there is WAY more expertise, detail and navigation of the human anatomy that went into the treatment, but as far as what you can “see” that was pretty much it.

I was still nervous but did it anyway.  The PT started by giving me a background in dry needling and made sure to mention that, although the needles are the same as acupuncture, the treatment, evaluation and goals are all very different from acupuncture treatment.   She also stated I may be sore, like a deep ache, after the treatment.  I was only sore for an hour or so, and luckily had no soreness the next day.

I had built what I thought it would feel like in my head to the point where I actually got nervous enough for the PT to tell me to stop and breathe.

All in all…it really wasn’t that bad.  I got my shoulders and neck done (my trigger points).  Looking back on it, the intense ache I got during the treatment didn’t feel any worse than a flare, like during a strong weather change…and it only lasted a second or two.

Now to the most important part….

Did it work?

I was pain free in the treatment spots for almost one full week after only one treatment.  These are the spots where I have daily, nagging, never goes away, pain.  I just felt…normal.  I was able to turn my head in the car easier and didn’t feel my neck “stick” while reaching like I usually do.

I was extremely happy with the results and YES, I will do it again.

Our next attempt?  My sore hips from the psoriatic.

Next needle on my agenda?  Getting rid of the methotrexate!  My Rheumatologist Ok’d the switch from Methotrexate to a biologic because of the side effects I was having.  I am SO excited to have my Sunday’s back…and some of my hair back for that matter.

New needle to try?  Humira injections.

After weeks of working through to get my co-pay lowered ($8,000 a month without insurance, $100 copay with, and now $5 with copay assistance, thank goodness) the injection pens are sitting in my fridge waiting to be used.

Because of the potential side effects (nothing like methotrexate from what I’ve heard) I am choosing to wait until after the holidays to start the injections.  I don’t want to miss out on any of the holiday events, or have a possible bad reaction, etc.

While this is great, it’s also a double edged sword.  I’m swollen, sore and crack and pop every time I move.  Once the methotrexate started to leave my system, this all came pouring back unfortunately.

I have high hopes for Humira, as it seems to have helped quite a few psoriatic arthritis patients based off the reviews and the posts in my support group.

As usual…

Only time will tell.