chronic pain

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

/ emusedone / Leave a comment

image

“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.

image

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.

Continue reading →

Fight, Flight or Faint? STRESS!

/ emusedone / 3 Comments

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 →

Pursuit of Passion

/ emusedone / Leave a comment
Me with my trusty bass guitar

Me with my trusty bass guitar

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!)

I’m Not Perfect But I’m Loved

/ emusedone / Leave a comment

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.
Continue reading →

Get It Where You Can – Solitude

/ emusedone / 1 Comment

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

image

image

Surreal view of clouds as sun sets on Broken Top mountain

image

Sun sets and finalizes the color change on the Cascades

Small juniper tree stands in front of sunset

image

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

image

Mt. Jefferson January 2015

image

Sunsets and moon appears on Cascade Mountains

Barbwire and mountains

Barbwire and mountains

You Don’t Look Sick, But You Do Look Old – Aging

/ emusedone / Leave a comment
Me with new grandson, Kade Robert 12-14-14

Me with new grandson, Kade Robert 12-14-14

With the New Year always comes new promises to myself. If I keep them…. wonderful! If I don’t…. awww that was a bit out there, I’ll re-evaluate that one next year if I’m fortunate enough to see 2016 which my chance of seeing it is as likely as the next person.  I don’t feel that Lupus SLE or pancreatitis or living near an active volcano, Mt. St. Helens, puts me in the “danger to not see the next year” club more so than the next person. I am not, unfortunately, the type of person who can make myself a nice, warm cup of green tea and sit at my kitchen table staring out at the grandeur of the breath taking, snow covered mountains I’m blessed to live near. To relax and go deep in thought of life, loves, future. I truly wish I could slow down and do so. But I am the type of person who tramples through each day I’m able to on fast forward as my Lupus allows, at high speed, breaking things as I go and missing out on so much. That is why I tell myself I’m not a marathon runner like my daughter, because I can’t pace myself. I would start out in a sprint as fast as I could go and you would find me at the 3 mile mark, passed out and done, not even making it far enough to get the T-Shirt or a medal for that matter. Slow and steady wins the race and benefits from the beauty that surrounds us all.  But I was able these last several weeks to slow down and take it all in which started me on the process of looking at my life and what things I’d change if I wanted to and could, and what things I might want to change but have to realize, I can’t.

I ended 2014 at the bedside of my brother-in-law passing away of heart failure and two days later, sitting in the waiting room awaiting the arrival of my third grandson. All of 2014 I’ve been living with my other sister and brother-in-law who is suffering from pulmonary fibrosis. My sister (his wife) is a breast cancer survivor for the last 15 years and recently it came back and she finished up 2014 with her second mastectomy and a smile on her face. Both of my sisters are older than I am and are like parents/best friends to me.  I was an accident they say, born to my parents late in life and spoiled rotten.

Braeden and little brother Kade

Braeden and little brother Kade

As if God wanted me to see that nothing is set in stone here on earth. That doctors can predict, “you are terminal and have 6 months to live, get your affairs in order” (as in the case of my brother-in-law with pulmonary fibrosis) but you’ve passed the 6 month mark and have lived on for another 12 months and still going strong, a bit less active but living life. That the person who seemed healthy as a horse suddenly passes away of heart failure. That you may have breast cancer AGAIN but are now titled, “breast cancer survivor” for the second time.  All these events made me think that God wanted me to see that LUPUS SLE is not a death sentence, a “my life as I know it is OVER and I will be bed ridden and NEVER enjoy another outing or activity again.” way of thinking was really wasting some valuable time. That worrying about the worst case scenarios in a situation only takes away from the blessings you really do have. The obvious pain and limitations persist, but I’m learning to live with it and say it’s OK to retreat to my bed and take care of my body and my soul.

Continue reading →