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.

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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.

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Kathryn & Cody: March 29, 2019: 3587

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!”

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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”.

Kathryn & Cody: March 29, 2019: 3609

 

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

Tell me a story: March 2019

Epcot by night, that was my goal.  There was a stage show I wanted to see and the fireworks display was a must.  That said we had walked Epcot all day.  My son and daughter-in-law had left as she was struggling with fatigue as a result of psoriatic arthritis which leaves her struggling in pain.  The rest of us were pretty tired as well.  So we decided to head back to the hotel for an hour or two and then go back out in the evening to watch the show and the fireworks.  My images today are from both the music and the fireworks events.

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I hope you enjoyed my walk with me. The park is a beautiful outing, the nature is gorgeous and it gets me out the house.

This is a circle blog so take some time to check out Beth William’s Photo Blog and follow the links around all the blogs.   I don’t know about you but I love to see what is going on in the lives of our contributors.

30 Minutes in the Life: March 2019

While the opportunity is still available, I like to try and spend time with my brother when he visits the USA.  He’s been a bit of a frequent flyer the past couple of years, but will stop soon.  We were fortunate to have him come through in December just in time for Amy’s wedding.  It was perfect to be able to have family with us on that day.

Then this past March he flew back for a big conference.  Next month he will be in San Antonio.  Not sure if I will get to spend time with him on that trip as I have been out sick for the past 2 weeks.

However, he had one day free with this March trip and it so happened that it was Amy’s husbands birthday on that day.  So as a family we all did a trip to Epcot.  We stayed up there 2 nights and got to spend the whole day walking around Epcot.  And yes I survived but my feet ached by the end of the day.  Down side is that I picked up a flu bug and it just flattened me.  I have been exhausted and tired and coughing for 2 weeks now and have just managed to pull together a few images for this blog.  We chose Epcot because it had the Flower event on in March.  And that aside I am not a big thrill rider so at least it had something of interest for me.

Here are some images from the day spent at Epcot.

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The flower show was as usual spectacular and I loved seeing all the Disney characters

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Bees are such an integral part of the life’s survival.  It is so important to continue to protect the bees in our communities.

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The gardens were colorful and beautiful.

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This display featured the junk that is found washed ashore or in our rivers.  We are dealing with a major crisis with the junk that is polluting our rivers and oceans.  We can take a stand and make a difference.

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I love sea horses and looking at these tanks reminds me of our scuba diving days in Mozambique, where the reefs are beyond beautiful and the color is so bright.

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Of course we went looking for Dory and Nemo while we were there.

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Cars in flowers. Just got to love it.

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We moved on to visiting the countries and this one was taken in Mexico.  The place was super busy.

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A Chinese dragon with a very interesting dragon face.  China had a display of the different creatures your birth sign falls under.  I am apparently a Tiger,  sensitive, emotional and capable of great love.  On the flip side I was also labeled stubborn, hothead and rebel.  So watch out for me.

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The amphitheater had Steve Aguirre from the band Journey playing music that week and so we made a point of stopping by.

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Apparently I must have listened to Journey’s music because I knew most of the songs.

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After walking back to the hotel and taking a breather, we caught the boat back to the park to watch the fireworks.

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It was a pretty impressive display and at the end we head back to the ferry boat to catch a ride back to the hotel.  Unfortunately we all packed up and left the next morning, the family back to South Florida and my brother on his long journey home to South Africa.

I am one of those people that can give and take on the theme parks.  To be honest I did Epcot 8 years ago and I can probably wait another 8 years.  That said it was good to be with my brother and have the whole family together for a change.  It was definitely a long and tiring day.

Thank you for joining us for another month of 30 Minutes. Just a reminder that this is a circle blog, so take some time to visit my friend Sonia Eppel Fotografie and see what she has for you this year.

Share Six: March 2019: Food

Ah, food.  I do enjoy eating food, but I realized I really do not like taking food images.  I lack imagination in this department.   So yes this months theme is {Food} and honestly I am stretching myself here just trying to find 6 images on the topic {Food}.

Recently my son, partnered up with a pastor and 2 other folk to start a new church in a nearby area, so I have been going down to the church on Sundays to help out with the creative side of things doing photographs.  The church wants you to feel welcome and so there is always coffee and something edible.  This particular day it was donuts.  Further down you will see some pastries.  To be honest – I was happy to photograph them but I am doing my best to stay away from these tempting delights.

Legacy Church 2019:  February 3, 2019:

Banquets are a fun place to photograph food, and this green starter was amazing.  Cucumber strips to form a bowl, with greens and walnuts and roasted onion, and a tiny bit of blue cheese really tasted good.

First Care Banquet:  November 6, 2018: 9427

Here are the very edible pastries that you can find at the new church.

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Another banquet plate.  Chicken seems to be the go-to for banquets.  This particular meal was lemon chicken with capers, roasted baby potatoes and fingerling vegetables.  For chicken it was definitely pleasing to the taste buds.

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This was my attempt at photographing my Strawberry Walnut Salad with a balsamic vinaigrette and honey dressing. I had planned to shoot individually and then the end result.   Clearly the strawberries were as creative as I could get.

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Last in line was this hamburger taken at my daughters wedding.  They opted for a beach lunch with the choices of calamari and wings as the starters, a spicy chicken flatbread, salmon on a bed of rice with asparagus, or a beef burger with fries.  Dessert was a key lime pie.  The food was great and I was glad I did not have to do anything other than pay the bill.

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So now that I have successfully managed to make myself hungry, I need to go and have some dinner.  Tonight’s menu with a vegetable pasta sauce and rice.  Hits the hungry spot 🙂

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_food.

Tell me a Story: February 2019

I have not been for a walk in the wetlands for a long while, so this past week I decided to head over to the local cay for a 2 mile walk.  While it is always nice to photography the birds I do like to photograph the different styles of nature.  This day there was some beautiful bokeh, interesting lights, and cute little critters.  And I got to get my two mile walk in as well.

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I hope you enjoyed my walk with me. The park is a beautiful outing, the nature is gorgeous and it gets me out the house.

This is a circle blog so take some time to check out LUPJi Photography | North Virginia Based Event and Nature Photographer blog and follow the links around all the blogs.   I don’t know about you but I love to see what is going on in the lives of our contributors.

30 Minutes in the Life: February 2019

February has been a interesting month of hot days, cold days and those in-between rainy days.  My goal has been to go walking in the wetlands on a Friday but just lately my Fridays have been wet and not much walking has got done.

There was a little break in the weather this particular Friday and I decided to go to the local park.  There really is not much there. A very small butterfly garden.  The butterflies never sit still.  A small boardwalk that does not attract much bird life.  It’s kind of a weird walk and a little lonely so I never really go to far in.

Today I picked up the macro and headed out there quickly to see if I could capture anything.

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This was perfect for the 30 minutes because I think I was in and out in about 20 minutes.  Once it started to rain again I headed back to my car.

Thank you for joining us for another month of 30 Minutes. Just a reminder that this is a circle blog, so take some time to visit my friend Channon Williamson Photography  and see what she has for you this year.

Share Six / February 2019 / Hearts or Red

So that was January 2019 done and dusted.  This year Share Six has decided to incorporate throughout 2019, different causes that mean something to us. It’s either a cause that we had agreed to highlight or a cause that directly impacts us.  This month we have chosen to highlight #CHDAwareness and the #paperheartproject.  Two years ago I first connected with the #paperheartproject when a fellow photographer asked all the friends she knew to post and image and tag #paperheartproject.  I was amazed at the response.  This year she is doing it again.  The goal of the campaign is to spread awareness of Congenital Heart Defects is all about. One out of a hundred children are born with a CHD. There are many different types of CHDs and children can suffer from one defect or multiple defects. The severity of the defect can range from mild, meaning a child will need no treatment, to terminal, the defects will ultimately take the child’s life.

The story my friend shared was that her son had been born with 10 different CHD’s.  He has now undergone 3 open heart surgeries, 1 intestinal surgery, and 88 other procedures.  Due to the functionality of his heart he will need a heart and liver transplant in the future.  There is no cure for CHD’s only surgery and as a mother my heart goes out to this family.

Paper Heart Project:  February2, 2019: 1266

As a parent, I knew the fear of hearing that my son had a heart murmur.  Fortunately for him, he grew out of it.  That is not to say that we did not experience multiple surgeries with Cameron.  He had a bone disorder, that resulted in 17 surgeries.  My nephew has had heart surgery just recently to repair a leaky valve.  But I cannot comprehend what this young boy in the story above has gone through.  Today he is 5 years old.

If you do not know much about CHD, I have posted a link below that you can go and read up about it.

For the rest of my blog I have chosen to stick with the heart theme.  The heart is the most vital source of our bodies.  It is the very organ that keeps us alive.

So I looked around, in nature and places that I have visited for images showing a heart.  Some are new, some may be older.

ARM Loxahatchee National Park: January 3, 2019: 0735

Walking in nature the other day I happened to see these leaves that were shaped like a heart.

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Visiting a museum, I spotted this piece of art of the wall that was the shape of a heart.

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In Seattle, two years ago, we visited the gum wall and clearly someone shared their love in the shape of a gum heart.

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Books are my heart.  I love to read and so one day, I played around with creating a heart in the book I was reading.  If you want to know, the book was “The Girl in the Spiders Web” 🙂

A.R.M Loxahatchee National Park: January 20, 2017:

I was out at the wetlands watching the sunset and was able to witness, for the first time ever in my life, the dance of the boat tailed grackle, namely murmuration.  I happily snapped a whole lot of images, and was pleasantly surprised when I looked at this one and it looked like a heart.

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February is the month of hearts and this particular image was of a February Centerpiece.

You can learn more about CHD by clicking on this link or  here.  The first link will take you to CHD.org and the second link will take you to the Children’s Heart Foundation.  You too can be a part of sharing awareness.  Tag #paperheartproject, #chdawareness, #sharesix_red/heart.

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 Kathy of KG Ledbetter Photography and see what she has for you this month. 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 on Facebook and Instagram tagging #sharesix_red_heart. You can either choose the color red, or you can post hearts or you can post red hearts, the choice is yours.

You can also find me on FacebookFlickrInstagramGoogle+ and Viewbug.

And on that note, red hearts are traditionally found around Valentine’s Day which is just around the corner, so I would like to take the time wish you all a Happy Valentines Day.  Richard is my Valentine and he photo bombed my shoot when I was taking my first image.  We have been married 32 years and I have to be honest, I cannot think of a better person to have at my side.  Have a wonderful valentines day.  Don’t forget to tell someone you love them 🙂

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