Category Archives: lupus SLE

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 How Photography Helps Me

Slowly to God I Turn

Something happens when words which form your thoughts and feelings are written down. They stay and don’t melt away like snow flakes or evaporate like rain, they stay.

This quote I’ve taken from a fellow blogger named Savannah. Her words on Faith and chronic Illness have taught me so much about positivity lately:

One Mountain at a TimeThese words I’ve written about illness, pain, situations I haven’t handled well have stayed here in my blog, to be revisited now and again. In doing so, I’ve learned a lot about myself. That I’m not the hopeful, faithful person I say I am. Instead, I’ve chosen to give negativity and the enemy my precious time and thought. I’ve not allowed the time and the room for healing of heart and understanding to take place. I closed a huge door and behind it I lived a sad, painful existence. Not noticing that the God I cried to was right there, with the answers and the love. No door holds God at bay, He’s there, but I have to realize I must look to Him instead of treading in this sea of self-pity and anger. Continue reading Slowly to God I Turn

Let’s Be Honest….Rowing My Boat

This summarizes being ill.... Just Keep Rowing Your Boat!
This summarizes being ill….
Just Keep Rowing Your Boat!

I haven’t “blogged” for awhile. I haven’t felt like it.  Not inspired to share anything with anyone even though I’m the only person who probably reads this blog. I guess I didn’t want to share anything with myself it sounds like…. “SHARE” a funny word to use. You “share” your pizza, you “share” your crayons. I decided to look the definition up in the Internet dictionary.  WOW! There’s the noun definition, the verb (used with object) definition, the verb (used without object) definition, the adverb definition and the Idioms. None of which fit “sharing bad news or how bad you feel.”

I use this blog to write my feelings that need to come out in an honest way and if someone who searches the tags I use, might find it, maybe they’ll see that they are not alone in feeling miserable. Even though they Love the Lord as I do, have unshakable Faith (wait, I guess mine is NOT unshakable?) they know He walks their journey with them, but they have many hours of feeling alone, afraid, or angry. That doesn’t mean they have lost their Faith, it just means they are HUMAN. When I write, I ramble. When I talk, I ramble.  I jump all over the place, I wish I didn’t, but I do. I probably break every rule I was taught in English Comp. I KNOW I’m breaking every common core rule. But I don’t really care, WordPress has allowed us to have free blogs and dang it, I’m going to BLOG!

Continue reading Let’s Be Honest….Rowing My Boat

Bitter Pills

imageThe Hits or “Pills” as I call them, keep coming. I again take from Kara’s blog, a kindred spirit. What she’s blogged is what I feel but have been unable to put into words.

But here goes….
These big pills life keeps throwing have been tough to swallow. They are nasty, big, painful and they are refusing to go down. To those that know me and have cared, thank you for hearing my heavy heart. Thank you for loving me in the midst of my fear and despair. I’m tired of me. Thank you for hanging in here with me. I love you and every prayer you pray for me. To my friends and family, forgive me for avoiding you. My pain is great both inside and out, and I’m fighting out of this hole. Please know you are much loved. Your acts of kindness may seem small to you but are huge to me. I so appreciate that when you seek me out, it is to share a smile and not ask of me anything. You don’t point out the mountains that stand in my way, reminding me I have to eventually climb them, you don’t ask questions. Because you know me well enough to see it on my face, or by my actions, that I’m not well and that I’m fighting. You understand that I do not want to talk about my illness. I don’t want to be reminded I feel horrible. I know I’m missing out on important friendships and relationships but I’m sick and trying to act anything other than that is too hard for me now.

I’m Dorothy in the Wizard of Oz standing with my little dog Sophie in the long hallway, and the wizard is behind the curtain, I finally get a moment of his precious time, he will see me now. When I pull the curtain back there sits a man with a white lab coat and a name written on it.

Continue reading Bitter Pills

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.

As sure as the sun goes down and this moon comes up, I’ll be fighting

Taken in July 2015. Made me feel good to just stare and taken it all in...
Taken in July 2015. Made me feel good to just stare and taken it all in…

I can do this.  I can. And once I’ve done it, I will help someone else hear those words and BELIEVE them.  If you can, reach out and offer your hand or your positive wisdom to someone having a crummy day.  Not for a “Nicesest Person” award for the week, but because you looked in their eyes and saw the pain you’re so familiar with.

Something I’ve realized lately as well.  When you are sick with an illness, such as MS, Cancer, CF, or my little companion, Systemic Lupus (SLE) and are in pain and dealing with all that illness brings daily…..you don’t have the energy or the “give a rip” to even give those who speak about you and your illness a second thought.  You don’t care to address the “but you don’t look sick” comments. It doesn’t matter what others think, you are just too busy hanging on.

….and I will try to fix you

Hope
Hope

“I am the Lord who heals you.” Exodus 15:26

My favorite song by Coldplay is “I will try to fix you”

“….when the tears come streaming down your face. And you’ve lost something you can’t replace….could it be worse? Lights will guide you home, and ignite your bones, and I will try to fix you”

If Lupus SLE wasn’t enough, brewing inside me for at least ten years (the year of my first acute pancreatitis attack) has been my sickly pancreas. They’ve labeled it “acute pancreatitis” but that’s about it. No plan, no advice.
Continue reading ….and I will try to fix you