A republish of a post 5 years ago. I thought the worst had hit, but I was wrong. More illnesses and tougher battles and loss. Lupus SLE, Achalasia, pancreatitis, just a list of this and that! But, within the brokenness of these cruel illnesses is an understanding that what I see that is beautiful is so much more beautiful now. I take nothing for granted, I love with everything I have inside my heart. Like I said, Life is a GIFT, No matter how it’s wrapped.
This short video is how, in less than one year, a Lupus SLE flare took me for a ride. From feeling good and healthy to the brink of death. Then the struggle to gain back as much of me as I’ve been able to. I have a ways to go but I’m on my way.
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!
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 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.
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.
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.
At 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 Fight, Flight or Faint? STRESS!→
After my diagnosis and all the tag along illnesses that came with it, I decided ENOUGH! I must find something to do on the days I have that allow me a few hours of peace. Of course I’d choose playing an instrument which required dexterity and healthy fingers and a memory. RA and Lupus don’t really lend themselves to learning to play a bass guitar but that was my part of my passion, music. I knew I needed to exercise my painful joints before I lose the ability TO use them if that were to happen plus I always seem to pick the difficult pursuits for myself. This is a video about WHY I decided to learn the bass.
Since starting my YouTube channel I’ve gotten many comments, mostly good but a fair share of bad comments. Ranging from “you suck really bad” to “you are an inspiration.” I received many comments from people simply informing me I was playing the bass incorrectly. hold it wrong, etc. I guess they didn’t read my Channel Information about why I took this endeavor up. Here is my video explaining why I decided to learn the bass. My PlaysBass site is here http://www.playsbass.com
(Does anyone know how difficult it is to talk into a camera by yourself?! Ha!!! I Had to start over several times because I’d start laughing at myself. Pull yourself together Susie!)