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!
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.
*This article was written by a guest blogger. Sidany Hilburn, the Reporter for Quapaw FFA Chapter*
My small FFA chapter in Quapaw, Oklahoma recently began accepting seventh grade students to enroll in agricultural education. The class is divided between seventh and eighth grade students, a class that was so unexpectedly large that some students found themselves sitting on the floor. The sight of younger members engaging in FFA is one of my favorite sights; I often find myself wandering the ag building before first hour when they are impatiently awaiting our Ag teacher. I was preparing for an event one day this week and had my FFA jacket in hand when I walked into the classroom. A seventh grade student looked at my jacket and said; “That is sooo ugly.” For the first time in my FFA career, I was speechless. All I could do was stare, but looking back, I…
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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.”
I 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.
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.
I haven’t posted a note in a long time, too busy dealing with the illness I write about. I write about it in an attempt to deal with it. Using my sarcastic humor which has helped me in many situations through the years, I’ve been able to leave this blog after my thoughts have been published feeling a bit lighter, optimistic. However, lately it’s just not happening. Loved ones passing away around me, dismal reports from uninformed doctors who don’t really know my medical history, telling me how bad things are. I’m missing my recently retired specialist of the last 20+ years. He had this all under control…”THIS?” is “ME.” If things were good we talked and laughed, if things weren’t looking so good, we still talk and laughed, with just a hint of seriousness and a lot of hope mixed in. I still walked out of his office feeling like I will be going into remission any day now. POSITIVITY & humor are my favorite scripts.
I’ve literally fallen apart lately. How unfortunate! I was on a roll, a good one. I may be in pain constantly, or staring at the ceiling at 2:00 am thinking about my latest bad blood test or hospital stay, but before Dr. Wonderful retired, I had an advocate.
I’ll get it together! Unless I get admitted to the hospital again for some new symptom. I think I ache more for the people I see have just received their diagnosis, or worse yet, have been ill for so long without a diagnosis and waiting to get into yet another doctor for help. What a true SICK CYCLE CAROUSEL.
Keep you chin up folks. There’s GOT to be help out there. Until then I’ll leave you with a couple of photos I’ve taken lately to take my mind off of Systemic Lupus (SLE). Remember, you are all loved, you WILL get through this, you don’t HAVE to smile all the time and pretend you’re fine. And it’s perfectly FINE if you are ill and don’t want to keep defending yourself to the unbelievers. Can you tell I’m not having a good day? Week? Month? Yep….. but it’s all going to be ok soon. Until then, peace and love and God Bless you.