All posts by emusedone

Hello! My name is Susie. The name "Emusedone" is derived from my time owning 14 Emus (big ostrich like flightless birds) and not liking them. This morphed into using Emus-one as my username because so much of life is amusing to me at times....Emusedone. I'm a walking contradiction. I live in the beautiful northwest, next to a huge ski resort and don't ski or snowboard. Nor do I kayak, whitewater raft or waterski (anymore....had a wakeboard incident that wasn't pretty) I was raised on a cattle & horse ranch but don't care for country music. I listen to alternative, rock, or whatever flips my switch. I train horses and show them in western events but my passion is playing my electric guitar. I have an illness called Lupus SLE but do everything in my power to tell myself I really don't have it. I don't go to support groups, tried a few and found them to be a great forum for people to complain instead of support (I'm working on this one, maybe I should be the one that starts some supportive dialogue?) I have a grown daughter and two grandsons of whom I believe are the smartest humans in the world but know otherwise. I love more than I don't love (I don't like the word HATE, but I DO use it occasionally) I'm married to a nice guy who should receive an award for patience, turning a blind eye and finding my lost keys, glasses, iPhone, laptop, dog, car, and purse. I self diagnose myself via Google and WebMD and I'm pretty sure I have ADD, OCD and stress induced hair loss. Well, I DO have ADD, real doctor verified. I have 10 (ten) notebooks with about five pages of written lists, ideas, directions. Because I misplace them and start a new notebook. Therefore I thought the movie, "The Notebook" might be about others like me who lose their notebooks. I've worked in the film and TV industry as a horse wrangler and stunt woman. In the judicial courts as a law clerk (please raise your right hand and repeat after me, I swear or affirm to tell the truth.....") and had my own web design business I loved. I love God, food, MUSIC, people, animals, outdoors. I think I failed English Comp in high school and college. My writing skills were learned from watching Schoolhouse Rock commercials on ABC...LOLLY LOLLY LOLLY GET YOUR ADVERBS HERE!!! Finally, at the age of 48 I joined a metal band, playing bass on Disturbed, Shinedown, Chevelle and Alice in Chains covers. Then became embarrassed I was the oldest person in the band AND the bar so I quit. I then joined the worship team at my church and toned it down a notch. Thank you for reading about me, I do appreciate it seriously. As I love meeting and learning about others.

The Long Journey to Be Honest with Self

I have had one heck of a negative year with my pancreas issues.  I have complained, blamed, made excuses, put off, until my body finally stopped me in my tracks and said it’s time to take a hard look at what you have, why you have it and what needs to be done.

What needs to be done is……. take control of this disease, advocate for myself, fight, fight, fight whoever wants to stray from the initial diagnosis and go on wild goose chases. But most importantly, listen to God.  He has my back, He does lead me where I need to go, but I have stubbornly spent my precious time and energy, which is now exhausted, doing the wrong things.

I believe, now, that by the time you’re my age, you KNOW your body.  You know what doesn’t feel right.  You know when things are off, when things aren’t working.  Also, hopefully you’ve come to the realization that doctors aren’t all saints that have ALL the answers.  They are people who’ve  spent years training.  But if they haven’t trained in what ails you, and they don’t send you to someone who has, you may find yourself in situations that are life threatening, frustrating and useless.

I have chronic pancreatitis, along with a bile duct that gets obstructed.  My pancreas is also very sick with other problems which have begun to affect my blood sugar (I am not diabetic) and has caused me to have bouts of dangerously low drops in my blood glucose while in the hospital, sending doctors and nurses rushing in with orange juice, IV bags, questions.  Finally the answers to my questions of what is going on?! “Your glucose is 41, dangerously low, do you have diabetes?” No I don’t and I’ve been in the hospital now for five days, I think that would have been brought up.

I don’t care WHAT the labs say, just because my lipase isn’t sky high on this particular day, doesn’t mean I don’t have a problem in the area.  Just because my pancreas looked smashingly well on an EUS a month after I healed from a bout of pancreatitis and I only show a dilated duct, doesn’t mean something isn’t amiss.

I have had hospital stays after attacks have started where my lipase was sky high.  Ending up in the hospital for days on ice chips to give my pancreas a break.  Followed by weeks of feeling better.  Then it comes back.  These past six months a new and frightening symptom has emerged, severe weight loss and malnutrition along with blood glucose levels that drop to dangerous lows I knew nothing about until tested while in the hospital. Since I am not diabetic, I guess my sick pancreas is having an affect on my blood sugar.  I can’t gain weight dang it, and it’s so low I’ve had to be admitted for a feeding tube.  The feeding tube in the nose idea didn’t work, seems that I have an esophagus problem too.

Why blog about my crazy health? Because maybe there is a person out there, at home alone, scared, in pain, no answers just like me, scouring the Internet for others suffering.  Are they alone? Is this normal? Am I going to be ok? That’s what I’ve been doing and seeing that there are people suffering and their stories have helped me to understand I am not alone and although my heart aches for them as I read their stories, I draw upon their strength. 

There is something about how God leads me to the places that I need to be. He opens doors that take me to answers I needed. I don’t want to wake up every morning only to complain and be depressed because I have a problem with this.  First off, I want to wake up every morning!  Secondly I want to have a positive plan to get healthy, fix the problem and if it isn’t fixable then learn ways to live a full life with it.

There ARE people out there doing so.  I have family, friends that I love that I want to enjoy.  I haven’t been because I haven’t fought hard enough to get well.  Oh I’ve followed every doctor’s order, I eat what I’m supposed to, I’m trying with ALL my might to do what I’m told BUT, since I know my body better than anyone, I no longer blindly follow those doctors who say “yes you have an odd pancreas bile duct issue going on. If you get sick again just go to your local ER.”

No, that’s not good enough. Because my local ER is busy and even though my medical records are on that computer in their entirety, I must fully explain my health issues in between violent throwing up and severe pain. I must wait, even as my husband begs them to contact my doctor, for an ER doctor to determine if I’m a drug seeker, or am I REALLY having a pancreas attack? Am I 88 lbs because I binge and purge and I I have anorexic nervosa? Or, am I a closet alcoholic and this is causing me to have bouts of pancreatitis? They have to rule everything out and even though it’s frustrating I do understand why. That’s their job and they DO have to deal with these scenarios. But I’m not able to bypass the 20 questions like the old days and get going on an IV for my dehydration and to get this horrible nausea stopped. So the “go to the ER” just isn’t a good option. If I’m sick enough in whatever ER doctor’s eyes, I will be admitted for observation and a week of ice chips only to rest my sick pancreas.  What I want are answers and a plan. A plan to fix what is broken.

If it can’t be fixed, I don’t want these diagnoses that are like picked out of a hat of illnesses. Only to find out after expensive repeated testing I do not have that. Yes, it’s a lot like that, and it got me out of your ER and home drugged to the max, but I don’t have that and with each attack I’m getting worse.

My last hospital stay was a scary fiasco with different doctors coming up with different ideas. None of them having a thing to do with my pancreas. But like a good soldier I listened and did as told. But it made me realize I need to keep looking for that specialist that understands this very difficult area in my body. I’ve waited months to see my GI Specialist that took months to get a referral to.  My third GI doctor. But they didn’t come to the hospital as the dry erase board hanging in my hospital room said they would. I’ve no idea why until I’m told after release they didn’t know I was in the hospital. They knew because they’re the ones who told me to go to the ER and then be admitted.

Can you see my frustration? It’s difficult to fight, fight, fight when you are sick and weak. So fortunately I have an advocate. He stepped in because I FINALLY gave him the go ahead. My husband, whom I thought would overreact with his Italian anger was instead, professional, eloquent in his delivery of his concerns for me and spoke with the doctor’s and nurses at length. Something I couldn’t do. He was able to get our concerns across, to say it isn’t acceptable to allow a human being to starve and suffer. 

My daughter had told me that sometimes we need to take an honest look at ourselves, to be honest with ourselves. I didn’t understand what she meant at the time but I do now. That the only person who is going to fix me is me. Every one else are the tools I must use. The days of me trying to do this alone, trying to hide my pain and be the smiling, happy go lucky healthy person who just happens to look like death at 88 lbs. are over. I need help and I finally asked for it and allowed my husband to step in. 

The battle is still being waged, but with God, an advocate in my husband, support and knowledge from my daughter and love from my friends this battle has become easier to fight while it’s become more serious. But I have my tools, (sorry hubby and daughter, you’re not really tools) and I have a Loving Father to lean on. I have Jesus’s words to hold onto. They DO give me the strength I need and the knowledge that if this is what my life is to be right now, then do it as I try to do all things, pleasing to God. 

We are all just passing through anyway. As the scripture my late and dearly loved brother in law held firmly to, and shared with me as he knew he would soon be going to his heavenly home.

2 Corinthians 1:3-4

Praise to the God of All Comfort

3 Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, 4 who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God.

I am comforted because I know where I’m going. But for now, I am here fighting the good fight. I may be officially called malnutritioned and have a chronically inflamed pancreas (I have so many different official diagnoses in my records but they all mean the same thing, just each doctor has a different name for it) and a stricture in my bile duct, I’m still perfectly perfect and a child of the most high God. It’s my belief and I don’t ever feel the need to explain it. I just know. 

Home from the hospital & posing with the grandsons!

Finally, to end this post I will leave you with the words of the last GI Specialist who took care of me in the hospital. As I waited anxiously in my hospital bed for him to come by to explain what he found in my latest testing….. “well, looks like you ate a little. Good! I think you have an esophagus problem too. You’ll get a call from my office, I’ve got to run, my wife is waiting at the airport!”

Ahhhhh, I know I feel better knowing NOTHING. The calmness I felt at a time I would have busted out crying which would have served no purpose can only have come from God. He calms my fears. 

Having Initials Behind Your Name Only Means, You Have Initials Behind Your Name

Happy 2016 everyone! Another year, another adventure! Yes, on this road I like to call “The Road Less Traveled is often a better route” so why is that statement so profound? Because I’ve taken the road less traveled and it a slower pace where we can stop and smell the roses. We can listen to our bodies and not jump to conclusions.

I’m tired of being the complaining woman who shares her dismay with this or that on a blog with strangers. I don’t want to be the woman who sings of butterflies and “it’s all going to work out JUST FINE if you just believe” either. I’ve grown weary of  both.  Neither gets me anywhere and since I’m writing this, not for my own enjoyment because I’m not a writer. But because it’s a free blog, no one listens to me anyway when I speak, so why not write my random thoughts down so I can make sense of them…..not…I can’t make sense of nothing.

OK, in all seriousness, I’m writing this to share what it’s like having systemic lupus and a bile duct that likes to sludge up sometimes and in the last three years apparently it has because I’ve found myself really sick and losing weight. This after 42 years of mostly healthy cluelessness about how our bodies can decide to get sick and go haywire, and how I cope with all that comes with that. But apparently, in the space of about five minutes of writing this, I’ve once again become the complaining woman who is sharing her dismay, but with a twist this year! Learn to deal with it, find the positives, and live this life given to me with as much gusto and enthusiasm as I did the first 42 years of it.  No one wants to hear a sad sack “sad sacking.” I’m much older now and thoughts come out of nowhere, profound ones. In the middle of the night which I feel is because I’m totally preoccupied with being sick. Versus when I was a young “thang” living out on the ranch the only diseases I knew of were the ones I was helping my parents treat the cattle and horses for and my sicknesses were limited to sore throats and broken arms.  I now have illnesses with dirty sounding names like Common Bile Duct dilation, Sphinter of Oddi (that’s a diagnosis I’m not too sure about) Lupus (not dirty, just sounds like a worm or something), and we don’t really get to pick and choose our diseases.  Not fair, just throw it in that pile there with the other things I say aren’t fair. As my mom used to say, “honey, nothing is fair in life, you just need to move around that and keep going.” Plus, I am thankful I do not have cancer. I had it once, melanoma but the great surgeons got it all and I’m SO thankful because I’ve watched too many dear relatives and friends fight cancer, and lose. In my own family all the women have had or have cancer. Out of five of us ladies, only one has been cancer free, but truth be known she did have the diagnosis but fought it and won, privately. My oldest sister is a two time breast cancer survivor, but is battling Padgetts Disease right now. My third sister died at 55 years of age of a quick cancer that spread to her brain. My mom died from COPD but had terminal melanoma at the time. In her early years she beat uterine cancer. Cancer is evil.

Another fine mess I’ve got myself in to (Google Image)

 

I’ve found that for the most part in my own seven year odyssey of illness that my biggest frustration isn’t the illnesses or the pain or the fear of dying that was unfounded, but rather the “professionals” who are charged with diagnosing me and treating me. Not all, but in my case, a large percentage.

I’m a firm believer that the words a physician tells you carry huge consequences or hope.  They can make a mild situation into a fearful, stay awake at night, get your affairs in order situation or, they can explain it like it is, a problem that they’ll work with me on. Those good doctors sit and listen, pay attention (I like it when they pay attention), and speak the truth, that is, “they aren’t sure at this point however, they are going to research this particular symptom, talk to some specialists, and at our next visit they’ll have some answers.  If they don’t find answers they are dedicated to helping me find someone who can.” You would think this is how it always goes for people but I’m here to say, no it doesn’t and if it doesn’t, no matter what, don’t jump to conclusions, you are a real person and it’s only speculation at this point. Wait until you get the tests, scans, proof.

Of course, coming in a close second in the frustration department is the “hospital gown” that hasn’t changed since I broke my arm in first grade YEARS ago and I assume weren’t new then either. Is it so we, the patient, can feel really stripped of everything, having no dignity, and asked to go parade the halls of the medical center, IV in tow trying to hold the back of our gowns together (which would fit my horse and hangs ridiculously tangled off, not on, my 95 lbs. of pure spunk like the white sheets covering Adele’s furniture in her video, “Hello”) Yes, it has served its purpose of being easily accessible for those stomach exams and IV opportunities, and its main purpose, to humiliate the 1 ounce of self esteem that remains in my body has been accomplished. Someday, someone is going to invent a NEW hospital gown that will be headline news. Whoever does I hope they win an award on one of the award shows or Tim Gunn from Project Runway shows up and says, “oh my! Your use of actual snaps and a drawstring is SO INNOVATIVE!”

Oh, I guess there’s a tie here folks, also in second place is….sitting upright in a hospital bed, early in the morning, hair sticking up everywhere, no makeup, in that stupid gown, when the hospital physician of the day does their rounds.  I’ve learned that hospitals have physicians whom work just at the hospital as a team leader of sorts.  Sitting there staring at each other he wins the “who’s more important” right off the bat.  He’s dressed in a suit, seems in a hurry, acts important, and wears that stethoscope like it’s his binky. I’m being rude, I KNOW not all are like this but for whatever reason I’ve encountered the hospital doctor who is so overworked he’s got no time to ask someone why you’ve been admitted so he can at least tell you. I used to be unflappable, we are all created equal I felt, and the only difference isn’t the level of education or  what we drive, but rather our “Common Sense Score” which sets stupid folks apart from people who aren’t so stupid.  I’m not being mean, I should explain, I’m saying I could be considered stupid but stupid to me means, “oh this stupid pill bottle won’t open, oh this stupid remote isn’t working again” it really means nothing about class or education, it’s just a word I use when I’m upset with something, so it must be stupid. So, staring back at me is a man, who looks at the laptop and says, so you are very thin, it appears you’re having problems with diarrhea. No, I don’t have that. I’m having double over pain in upper abdomen and can’t keep anything down. Oh, ok, well we’re going to give you fluids and keep you comfortable. Any reason you’re not eating? This is where my “stupid” statement comes in, “please look at my stupid record in its entirety. I was 107 lbs, now I’m 90 lbs. I’m sick and please please do not give me that pain medication. It’s making me feel worse.”

So back on track here, the mere fact I’m half naked in a hospital where I don’t know anyone, with a personality extremely like the chipmunks (not the dancers) Chip and Dale.  I say “I’m sorry!” for situations I shouldn’t be sorry for. Such as, if someone runs their cart into me at the grocery store I say, “Oh I’m so sorry” and pick my cart UP and move it over, “after you, oh no! after you!, oh not I couldn’t possibly go first even though I was here first, you go!” then they do.  At the hospital I feel I’m putting everyone out, I won’t ring that call button unless I just can’t hold it any longer, then say “I’m so sorry” as the nurse enters my room. Until weeks later and I get the bill then I get mad at myself that I wouldn’t bother the nurses for anything, apparently I’m charged dearly for their care. I’m not sure they get that money though.

Continue reading Having Initials Behind Your Name Only Means, You Have Initials Behind Your Name

All I have to do is wake up

Sometimes I feel as though she’s reading my mind. I thought no one else could possibly know, much less understand, my internal struggle. Or, have the same feelings as I do about my lupus. This blog is so well written, so raw, it’s healing my heart knowing I’m not alone. I always hear, “oh you’re not alone Susie, join a support group and find others to connect with!” Well I’ve tried but there was no connecting, just complaining. If I wanted to spend my precious energy getting ready, dressed, hair up in ponytail, and drive my tired aching body somewhere for support and to meet people dealing with the same illness I have, I don’t want to be brought down by the never ending competition for the evening of “who’s got a worse life today?” I want to learn how others cope, how I can change my attitude which at the present time is only adding to my depression and loss of hope.
This blog right here helps me in a positive way. Let go and Let God, be thankful for THIS day here, and whatever awaits me in the morning I shall deal with then.

silentlyheardonce

I was laying in bed this morning, debating if I should get up and take my medication or just lay here and try to go back to sleep. But that crazy question that has no answer continued to haunt me this morning. What is the meaning of this life I’m living? I can’t figure out what my reason for being is. I wonder if I’m living or existing. My days feel empty to me, yet I bask in my solitude and it makes as much sense as the life I live. I’m doing what I must do to wake each day, take meds, sleep, eat and shit. I go visit doctors to analyze my health; I go to the physical therapy/rehab. I spend hours on Facebook, peeking into other people’s lives and playing a game that has no real purpose.

Life once made sense, or maybe I thought it did…

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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