Share Six: April 2019: Psoriatic Arthritis

As you have seen from the past couple of months, Share Six decided this year to highlight different causes that we have either worked with before or are directly affected by.  This month I chose the disease Psoriatic Arthristis.  As a family we are directly impacted by this autoimmune disease.  If you are photographing colors – the theme colors are orange and/or purple.

Four years ago when we first met Kathryn, she had a foot injury. Something the doctors had put down to an injury caused from a soccer incident. Kathryn actively played on a soccer team.  Through many investigative and intrusive procedures, they were convinced that she had a bone spur affecting her and procedures were done to rectify that.

In August 2015, Cameron and Kathryn got married.  Instead of wearing sparkly dress shoes, Kathryn wore sparkly sneakers.  She had a fear that her ankle would not support her when walking down the isle.

Kathryn was a beautiful bride, excited about what the future would bring. Little did they know how serious her sore ankle would become.

Some months and numerous specialists later, Kathryn symptoms took a new turn. At the age of 28, she was diagnosed with Psoriatic Arthritis.  What is Psoriatic Arthritis?  It is an autoimmune disease that causes inflammation of the joints, along with a skin inflammation.  The joint inflammation is painful as is the psoriasis.

Her symptoms were joint pain.  Pain in her ankles, pain in her knees, pain in her hips, pain in her wrists, pain in her lower back and neck.  Sometimes both of them sometimes different parts of the body.   These days we do not see Kathryn without a brace on her ankles and her knee, quite often they will be on her wrists as well.

What is your wake up like in the morning?  I like to sleep late, and have a series of alarm clocks that get me up and moving throughout my morning rush to get to work.  For Kathryn, waking up could take every bit of her energy.  Fatigue is a very real side effect of Psoriatic Arthritis.   Kathryn can sleep up to 12 hours a day and not feel like she has got any sleep.  I spent 3 hours with them this past Friday taking pics and by the time I came to leave I could see that she was exhausted.  I knew that when I walked out the door she was heading for the bed.

Her morning starts with medications.  Besides for the pills, there is pain patches and injections.  Her evening finishes with medications.  This has become a way of life for her.

Psoratic Arthritis can affect other aspects of her life besides inflammation, joint pain and fatigue.  PSA can affect her eyes, her hearing, cause nail dystrophy, and increased mood swings.  PSA can also adversely affect her heart, cause obesity, swelling and metabolic syndrome.  It can also cause diabetes and inflammatory bowel disease.  Simple tasks like cooking can be hard for Kathryn because the psoriasis had caused the tips of her fingers to split open and bleed.

Kathryn has gone through multiple medications in an attempt to find the one that actually makes a difference.  The doctors quickly realize it is not working for her but the medical system will make her wait a number of months before she can switch to something different.  The waiting means dealing with pain that is not being helped.  She has also had a series of nerve blocks to try and ease the pain.  These procedures were painful and often resulted in tears.

Starting her day and maintaining her strength throughout the day is tough for Kathryn and given that Kathryn autoimmune disease has progressed quite rapidly, they made the decision to introduce a new member to the family.  His name is Cody.  Cody is being trained to be a full time service dog.  And people will ask, “why does she need a service dog, it does not look like there is anything wrong with her!”

Cody has a multi purpose role.  He is a Golden Doodle that looks about as big as a Shetland pony.   He is still a puppy at 2 years old, playful and excitable.  However, Cody is learning commands, and learning what a service dog outfit is like. He also functions as a comfort dog.

I spent some time with them on Friday learning just what Cody is being trained to do.

Cody has learned how to open the fridge, because some days Kathryn does not have the strength in her wrists to pull the fridge open.  Cody has learned to fetch a bottle of water for her.  (Taking photo’s of a moving dog was much harder than I thought 🙂 )

 

 

Cody has learned how to pick up the dirty clothes from the floor and give them to Kathryn because some days bending over is too painful.  Cody has also learned how to drag the laundry basket to the kitchen area where the washer and dryer is situated.

 

 

Cody has also learned to carry parcels for her if she is struggling.  He is very pleased with himself when he has achieved what he has been asked to do.

 

Have you ever gone to a shopping center and wondered about the person in the disabled parking spot.  I will confess to saying I have, that was until I had foot surgery and used the disabled parking that I full understood that sometimes you may look normal, but there is stuff going on.  PSA is that silent disease that has you looking like you are ready for the day and feeling like you are crippled and cannot move because the pain is so intense but to the world it is not visible.  The same applies to Kathryn.  You and I may not see the true reality of what she is going through.

 

Cody is there to nudge her if she is a little foggy.  He is there to lick her hands to get her attention.  He is there by her bed at night in case she needs help.  If she wakes up in pain and Cameron is not visible she can tell Cody “Go fetch Cameron” and off he will go.  Cody is more than a pet, he is her right hand.

 

Cody is a service dog.  He is used to his harness and has learned to walk at Kathryn’s pace.   He has a job to do and he is learning to do it well.

 

We were at Epcot recently as a family.  Kathryn cannot walk Epcot.  However, the catch-22 is that she cannot sit for 8 hours either.  So for a period of time Kathryn will ride on a motorized wheelchair and Cody will walk alongside her.  When she cannot sit any longer, Cameron will ride the motorized wheelchair and Kathryn will walk with Cody.

 

Cody even got to go one one of the rides at Epcot.  We did the Frozen ride with him.  He was well behaved and did not seem too concerned about the slight drop at the end.

 

Cody is a service dog.  One little boy called him a “Superman” dog because of his red coat.  Kathryn tends to agree with him.  Service dogs have a job to do, and people are asked not to touch them.  Yet somehow that request is ignored.  People want to pet him which will make him excitable and difficult for Kathryn to manage.  Cameron overheard one person say it would be fun to pull his tail.   These are the kind of comments that are made about service dogs.  If you see a service dog respect the role he has to play.  If we go out to dinner with Cameron & Kathryn, we do not pet Cody until the end of the evening when he is going to get in the car.  Despite that, when he is out of his “superdog” outfit, he is a playful and energetic pup.

 

As time goes on and dependent on how Kathryn’s autoimmune disease progresses Cody will become a significant help to her in her day to day living.  He will be her strength when she has none.  He will be her brace when she is feeling unsteady.  He will lick her face if she seems unresponsive.  He will open the fridge, bring her a bottle of water, drag the laundry, pick up things for her, find her keys and be the best possible assistant she can have.  His favorite command apparently is “go find Cameron”.

 

Psoriatic Arthritis is not for the weak.  The pain that you live with day in and day out is intense.  It limits what you can do, where you can go, and sometimes how you react in different situations. I have learned so much from Kathryn about what she is going through.  I admire the determination she has to get up every day and try to make the best of it.  Some days are good, some days not so good.  Some days she wakes up with such intense pain that she cannot get out of bed. Those days are the hardest, especially when you are home alone.  Cody has brought a new sense of comfort to her.

If you know of someone suffering from Psoratic Arthritis, try to understand that some days she may want to be with you and other days she may not.   Try to understand that life is tough.  Be there for the person when they need something and just be the support and friend they need.

I read the following recently put out by the Mental Health and Invisible Illness Resources:

I have a chronic illness, don’t be surprised if…

I don’t answer the phone or respond to messages straight away

I cancel our plans, especially at the last minute

I can do something one day, but not the next

It seems like I am not listening or interested (brain fog)

My energy levels change and I become exhausted

I leave early from a social gathering, party or event

I suddenly need to lie down and rest.

I still love being your friend, but sometimes my illness prevents me from doing the same things as before, please don’t give up on me. 

 

Psoriatic Arthritis, along with other forms of autoimmune diseases is a silent disease.  We don’t see what is going on.  Don’t give up on you family member, your friend, your colleague or casual acquaintance. They are going through far more than we ever know.

Thank you for joining me for this month’s Share Six blog post.  This is a circle blog.  From the sneak peak images I have seen, you are going to want to follow the circle.  Please take time to visit my friend and very talented artist Janet Douglas and see what she has for you this month.  To view Janet’s IG page head over to @wiredtothemoon  Keep following the circle to see what the other photographers have shared this month.  Don’t forget to leave a little love on their page as well.

Come and share your images  Facebook and Instagram tagging #sharesix_autoimmune or #sharesix_orange_purple