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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

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

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.

The Adventures of Lupus LaRue

The names, events, situations have mostly all been changed to embellish the story because that’s how I roll

Not every moment or every day is filled with pain, brain fog and fatigue. There are times I may get a short reprieve, and I mean short, but a reprieve nonetheless from my insignificant other, Lupus SLE. After eight months of fighting with Lupus and his buddy pancreatitis. Home bound or in the hospital, I suddenly was well enough to DO something HUGE! God’s grace shown upon me and I had a solid two weeks of nearly symptom free health, I say NEARLY because lupus never totally goes on vacation. I jumped on it, and….

Me Tired
Me Tired

….like Macklemore poppin’ tags at Goodwill, I took total advantage.

I went camping. An ADVENTURE it was too. It started out innocently enough at the beautiful Crater Lake. The deepest lake in the world the brochure stated! I made my way to the lookout, where happiness filled my soul and turned into pure giddiness. I found myself dancing a little jig on my way. With my trusty guard dog, Sophie, keeping a keen eye out for bears, cougars and Bigfoot, I was ready for my adventure to begin.

Dancin' a little JIG

I was so happy to be out somewhere I asked a kind man to please take my photo so friends and family would believe that I actually did something. After handing him my iPhone, I explained that on the count of THREE to touch the round button.

Continue reading The Adventures of Lupus LaRue