How Photography Helps Me

Bald Eagle

My friend the eagle

I’m not a professional photographer.  I’m a person, with a camera who happens to love taking photos of the things in my life that bring me joy or things I want to have to look at in the future.  Being ill with chronic illnesses is a full-time job. Swirling around me are doctor appointments, managing the phone calls reminding me of doctor appointments, invasive tests, pain, questions, medical bills, hospital visits, anger, wrong diagnosis, right diagnosis, trips to the pharmacy, insurance problems, explaining… lots and lots of explaining. This is along with living life as a wife, mother and grandparent trying to act like I’m just fine because everyone has an opinion, if you just keep your struggles or problems to yourself then you don’t have to listen to the well meaning loved ones constant suggestions or, sometimes their anger at you.  I don’t blame them, I understand that they love me, maybe they’re scared but trying to not act it, their life is affected too.  I know when they’re using my illness as a way to not take responsibility for bad or rude behavior or saying hurtful things as well.  I don’t care if I’m sick or 100% healthy, I have learned that if someone sees your weakness, and they know you don’t have the energy to fight, they will do and say things they’d probably never do or say if I wasn’t just too sick to take action. So, I take responsibility and suggest counseling for us.  But back to photography.

Bald Eagles

Working together

All that comes with being ill with “diagnosed conditions” which is somehow a must have for the majority of people to treat you with respect and honor your less than perfect ability to meet everyone’s needs, I found I needed something to quiet my mind and release this anger.  I’m not an angry person, I thought, but I sure have a lot stored up.  However, by getting my camera and disappearing to my favorite places to take a photo or two or 500 I regain a calm that allows me to forget the pain and all that I must handle and instead, enjoy my life. The only person I should look to, to save me or to help me is ME.  My attitude towards all I deal with is going to either make me an angry sick person with a pessimistic outlook on everything which I never liked being around, or is going to help me see that I’m not totally gone, useless, broken, hopeless and numb.  Rarely am I well enough lately to take these photo opportunities.  But, if ever I get the chance, I fight to do it because it reminds me of all the beauty around me. Continue reading

Once in a blue moon

Blue Moon, July 31, 2015

Blue Moon, July 31, 2015

NOW I get it. I’ve used it many times, “once in a blue moon.” It doesn’t happen very often, and as I said, “as sure as the sun goes down and this moon comes up, I’ll be fighting.” Little did I know this event would fit my situation so well. That when you are living a life with obstacles around every corner, it’s easy to just be a negative person with no joy to be found OR be the most positive inspiration ever, smiling through your pain and telling others who suffer that they too can smile, be positive and BEAT THIS DISEASE!

I live my life in reality. If I feel crummy, I go seek out those things that have brought me joy; music, nature, the mountains, the sky, humor. So a support group for me isn’t an option, I don’t want to sit and compare my aches, my chances, or compare symptoms. I want to smile, laugh, sleep if I want. Because Lupus isn’t WHO I am, it’s an illness I have, and it doesn’t define me. That’s the positive message I want to share. That I’ll not always have the answers to my own personal struggles that come and go with lupus, but once in a blue moon it will hit me, “yes, sure today was crummy, tomorrow may be worse? So it’s time to go seek those things that brought me joy at one time. Keep fighting it. Laughter, smiling, beauty we see with the eye or hear with the ear release endorphins that no drug I’ve been prescribed yet can match for changing my crummy attitude.”

imageI was lupus tired yesterday. I figured there would be no viewing of a blue moon last night. But I set my tripod up anyway and when it showed up, well that was it! I was no longer tired, and I started snapping pictures. For an hour I forgot about struggles, aches and pains, and enjoyed a once in a blue moon moment! So, if you’re having a tough day getting through the maze of pain, illness, fear, and stumbled upon this blog, this is how I “deal” with the negative, by seeking out the positive. Doesn’t always work, but sometimes it does. I’m my own support because I know myself best.  There is beauty everywhere in this hateful world.

Turn the Other Cheek…. If You’re Able To Move

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“I do not feel like I have the courage for this journey, but I have Jesus—and He will provide. He has given me so much to be grateful for, and that gratitude, that wondering over His love, will cover us all. And it will carry us—carry us in ways we cannot comprehend.” from Kara Tippetts, Mundane Faithfulness

This post is more for my own personal venting. Venting about two months of trying to find a new doctor and what I’ve encountered. Poor me, yes I’m choosing to feel sorry for myself for a moment. Long enough to first write the disclaimer that I do indeed have FAITH, I know I’m not alone in this. But the human in me needs to get this out, to share my real nightmare journey. That I don’t feel like I need to always smile, to always respond, “Oh I’m ok, tomorrow is a new day and new blessings.” I’m being real here. Even with Faith, I have very low times and I question why or I’m struggling to hear from God how I can help myself.

The above quote from the fabulously faithful Kara Tippetts’ blog, who recently went to her eternal home after her long fight with cancer, came to my mind. She shared her journey. The up’s the down’s the in betweens. Her Faith was solid. I learned a lot from her writings. I felt like I had no business complaining or whining. My illness isn’t “terminal.” It’s just “loaded with preservatives.” Meaning, with new drugs like Prednisone and Plaquenil you’re expiration date is longer. The life expectancy for someone with Lupus wasn’t too good but in the last ten years they’ve come a huge way and a person can live a long a long life. But this disease is one big cruel mystery, a ever ending lineup of sub-contracting illnesses like kidney disease, heart disease, all known as “complications of Lupus.” So you don’t get the “Terminal” stamp but rather the “It’s Complicated” stamp. I feel like I’m at the carnival riding in one of the rail cars in the haunted house. You don’t know what to expect around the next corner.

GI Tract Complications

GI Tract Complications

How dare I break down and complain?! Truth is, I can if I want to. Then I can count my blessings which are many.  My journey is not a constantly torturous one, nor is it in preparation for my journey to my eternal home. Thing is, it’s not considered terminal so don’t get your affairs in order….BUT, it CAN take your life, “we just don’t know.”

A known illness like SLE may have a name, but its cruelty is a mystery, it’s determined to keep the sufferer in constant, painful transition. To give false hopes of a reprieve, before it shows you it has the power to take your last breath from you. However, it can’t take His love from me and the blessed assurance Jesus’ constant presence is mine and I know where I’m going. I’m not blindly following a religion because “now I’m sick,” I’ve spent my life in a private journey learning about God, Jesus and my own PERSONAL beliefs and relationship with a loving Creator

I had the honor of being interviewed by the Lupus Foundation’s magazine, Lupus Now, in their Spring 2015 issue. The topic I was asked about is Lupus and GI Tract problems. I was interviewed back in November of 2014 when I still had a primary doctor and things were looking up. I mentioned being your own advocate and it turned out I really needed to and still need to be so. Read this interview here.

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But I am human and I’m tired and frustrated.

I love my Creator. God has been my constant companion throughout my life. I work hard at living my life from His teachings. Jesus is my Savior. Now comes the part of me that has had just about enough of struggling through mankind’s messing things meant for good up. Greed, unkindness, a knack for superiority over those unable to fight for themselves. I always forgive, the meek SHALL indeed inherit the earth, however, the “turning the other cheek..” part has been difficult because I’m unable to turn the other cheek. It’s too painful, Lupus SLE and kidney disease has me pretty much unable to move, I can’t turn my body….period. It hurts.

Ha, ha I know. Funny analogy! But painfully true. I’m taking a step back from complaining about senseless, everyday annoyances. I have a story to tell. It’s of my journey in the healthcare maze these last several months. Actually, it started back in November of 2013 with a hospitalization for acute pancreatitis but I won’t bore myself or anyone who accidentally reads my blog with the specifics.

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Fight, Flight or Faint? STRESS!

imageAt some point in your life you learn to listen to that voice inside that gives everyone the benefit of the doubt and you weed through the BS you allow people to put you through. It’s important when you are on the quest to beat your illness. You either lay down and let sickness take over or you fight. I decided to fight. Because I know I can get better or at least better at dealing with a chronic illness. With SLE, my attitude each day impacts the severity of my symptoms. STRESS and SLE don’t mix. STRESS and I don’t get along. Whether it’s Lupus SLE, Cancer, MS whatever, STRESS is not your friend and the fight or flight instinct becomes fight or faint. Not everyone has the ability to quiet the mind, meditate, slow themselves down. I know I don’t and wish I could. My brain just doesn’t operate that way (another story) and I don’t want to take medications to slow who I am down. Continue reading

I’m Not Perfect But I’m Loved

img_0645-0My thoughts taken from a teaching by Joyce Meyer.


As a believer in the word of God, I’ve spent years hearing it all from the mouths of those who aren’t always reading a book written by and about a loving creator. My Creator.

Even though we’re born again many times our soul is full of poison. bitterness, resentment, anger, greed, hatred, jealousy, envy, worry, strife, anxiety, fear and on and on. We dress it up, we take it to church, we smile at each other. And that doesn’t mean we won’t go to heaven when we die, if you’re a believer in the Holy Bible, we know we all have the choice to go to heaven but you’re never going to enjoy your journey, and you’re not likely to take anybody with you if you don’t get the mess in your own soul straightened up. We need to think how to talk right, act right think right.

I don’t intend to be a sneaky believer or a quiet believer. My actions that people see should be a positive light, that by my actions may bring someone hope, in Christ. I have no quotas I must meet, no judgements I must place on others. Far from it. That’s not my place & it’s extremely fulfilling knowing I can love who I want, when I want, in accordance to His word, not taken out of context. I do not have to miss out on knowing and loving someone because of fear, condemnation. I do NOT believe that the “Kingdom of Heaven” is reserved for just a few based upon the preaching of a man or woman on a Sunday morning. Reading excerpts from a book with many interpretations, and choosing scripture out of context to fit our sometimes selfish selves. There are wonderful teachers of the word out there, and they walk WITH us and are there to teach God’s word, not their own agendas or what might be “popular” at the time.

For me the only way to be happy is to be aggressively generous. I don’t wait to feel like it, I don’t wait to want to, I do it everyday because I wasted enough of my life being sad & mad now I want to be glad. So everyday I wake up and take a big spoonful of humility and generosity. I’m here to serve God. He’s coming back for me and I’m going to stand in front of Him and give an account and I want Him to be proud of me, and to know how grateful I am for the life I’ve been blessed with. It’s time to get rid of our baby bottles, pacifiers and grow up and be the men & women of God we say we are as we pass judgement on others, judgement that’s not ours to make.
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Get It Where You Can – Solitude

imageGod is the ULTIMATE artist. Creating unmatched beauty for His Children. I’m a child of THE most High God. It is this that strengthens my soul, gives me hope and peace everlasting!
Well, since I’ve found myself slowed down by Lupus, I also found myself full of anxiety. Wanting to rush around again but stuck in a body that won’t move and has no intention of moving around anytime soon. However, the great thing is, I discovered mesmerizing sunsets viewable from the places I live and visit frequently. The kind that draw a person in and forces the senses to focus on the beauty of something out of our control…. the sky paintings every morning and night.

Believe me, this is a challenge for me. To focus long enough to notice something and once noticed, the intense focusing on everything “that something” has to offer in the ten minutes God is painting it. Changing the colors, the patterns, intensity. HOW do those clouds and that sky go from a light, plain blue to a spectacular slow motion movie that forces me to sit still and feel better? No drug I’m prescribed has been able to give me ten minutes of positive energy, hope, pain relief like these sunsets. The medication eases the pain, but not the heart & soul. For me, seeing this beauty helps my soul. A God who can create such beauty in a world gone mad can heal what hurts me and if not heal, He helps me through it. You just can’t lose when you believe in a higher power, that there is more to this time we spend on earth than the hills & valleys we find ourselves in. That being a kind, compassionate, loving person is so much better than filling ourselves with bitterness.

So to summarize, when people ask me how I get through the tough times? I have to say my Faith, Humor, sunrises and sunsets.

Peace, Susie

Sharing my secret solice

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Surreal view of clouds as sun sets on Broken Top mountain


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Sun sets and finalizes the color change on the Cascades


Small juniper tree stands in front of sunset


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Cascade mountains, Broken Top & the South Sister of the Three Sisters mountains


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Mt. Jefferson January 2015


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Sunsets and moon appears on Cascade Mountains


Barbwire and mountains

Barbwire and mountains