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…

   
    
    
    
    
    
    
   

 

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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!

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

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.

 

 

 

 

 

 

I Admit It…I’m Scared…

PA Ribbon

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

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

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

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

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

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

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

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

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

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

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


More common

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

Less common

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

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

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

PA Hands

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

PA Feet

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

 foot

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

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

I can do this…

I can do this….

I can do this…..

Right?

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