Category Archives: Chronic Pain

Intuition, it’s a Beautiful Thing

Intuition is a beautiful thing.  It’s that faint feeling that what you feel or hear may be more than what you think it is normal, or what someone tells you it is.  It’s that little voice that tells you that something is not what it seems.  Intuition is knowing yourself better than anyone else knows you to the point that what may sound reasonable enough when told to you, still has you thinking otherwise.  But you move forward, go on, and you live your life accordingly.

There’s a misconception that questioning what your told, or not “buying it” can put you in a class of people doctors and others like to call hypochondriacs.  It’s then you may just shut up, ignore your intuition and messages your body sends you, and move forward, go on, and live your life accordingly again.

That is what I have done for many years, at least since my early 20’s.  It’s wayyyyy back then when I’d lean down to get a drink from a water fountain and end up standing there trying to make the water go down.  Most of the time, I would just calmly walk to the restroom and spit it out.  Because it just wouldn’t go down, and it hurt in my chest. Not bad, but enough to make me think to myself, “well this can’t be right…” so I would tell my mom, and she would say “we need to get that checked,” and a doctor’s appointment would be made.  I didn’t like doctor appointments, only because they reminded me of the only times I saw a doctor was when I broke my arm in 2nd grade PE, or I broke my collarbone in 6th grade recess playing football with the boys, or when I broke my tailbone numerous times from tripping while jumping rope, to falling on the balance beam in gymnastics.  A doctor’s visit surely meant something bad had happened and I was going to either get a cast or have x-rays while the technician pulled, twisted, and manipulated whatever was broken in such a way to get a good x-ray, which was always painful.  Maybe it was the subconscious memory of the auto accident I was in when I was 2 years old where I was trapped under the truck, 7 skull fractures and weeks in an ICU, my parents told if I survived I may be what they used to call “a vegetable.” But miraculously I survived after surgery to relieve the pressure and went on to not be a vegetable, but rather an A student who was clumsy.  My parents didn’t tell me about this accident or my brain injury because the doctor told them at the time it was best not to so that I wouldn’t be afraid to do things in life that might hurt my head. Yes, sounds silly but that is what mom told me when I learned myself about the injury in 6th grade while sneaking a peak at my health records during PE health checkup.  I read all about a traumatic brain injury when two years old.  It didn’t upset me at all, I was intrigued by it, and asked mom when I got home.  She be came near hysterical that I’d learned about it and while crying told me the story.  I asked why is it such a big deal? I’m fine! She agreed, stopped crying, told me she was sorry and yes, I was fine and had no lingering problems from the injury because children’s brains heal much better than adults.  But I do faintly remember what might have been a hospital room and wanting to go home, and I faintly remember standing on the dinner table and being given a raggedy ann doll with the family surrounding me (this was when I got to come home from the hospital I’m told), then given a football helmet (San Diego Chargers) to put on.  Why? Because they didn’t have seizure helmets back then.  I had to wear a kid’s football helmet for a year, with my little dress on, I remember that helmet and just thought I must have loved football when I was little. The main thought here was, I didn’t like hospitals, doctors, or San Diego Chargers. I now know why.

Protein Smoothies are my Life these daysThey did a good job of keeping this from me because I had no intuition that something may have happened to me as a child when I was older and had migraines. Not once was I told that maybe they were due to a head injury.  I just assumed hormones and would lay in a dark room.  Fortunately I no longer have them.

Back to this swallowing water and intuition thing.  Through the years this problem persisted.  Slowly getting worse, with food getting “stuck” or me having to take small sips or bites and just wait for it to go down.  Every few years I would make a doctor’s appointment and go in to explain this phenomenon.  Each time the doctor would tell me it’s nothing, it’s normal, just take smaller bites and smaller sips.  I’d leave the appointment mad I’d just spent money hearing something I’d already been told but my intuition had me thinking I really needed to have it checked.  No one else I knew had this problem, and those I told would just shrug and say I don’t know, never had it.

It wasn’t until much later in my life that this problem had escalated to the point that I wouldn’t eat sometimes because I just couldn’t handle the pain of those times the food would get stuck.  It didn’t happen every time, but enough that it became somewhat of a funny issue amongst my family and friends.  How I would take a sip, then hit my chest hold one finger up and say, “give me minute” and we’d all wait until whatever made it’s way down and the pain of something stuck in my chest was gone.

During this time I was losing weight. A lot of weight. I had several “attacks” where the pain in between my breast bone was so severe I’d be taken to the hospital, then admitted for possible pancreatitis or unknown abdominal pain. Actually, one time I really did have pancreatitis because the lipase test came back severely high and the scans showed a pancreas about to burst.  So, my swallowing problem got lumped together as a pancreas issue.  No science or explanation behind it, just told, when the pain hit it is probably your pancreas.

But I just didn’t think that was it. Still I was seeking an answer from doctors about the swallowing problem and being told nothing is wrong there, its your pancreas now.  I would keep mentioning it to the point where doctors and others would think I’m being a bit of a hypochondriac.  Just believe what they told you about your pancreas and let it go!

I did let it go but the problem got worse and worse. My intuition turned to an all out belief that something is wrong right HERE (me pointing to the area where my esophagus meets my stomach). The doctors would humor me by prescribing heartburn medicine, or chalky liquids to drink when I felt the pain only to have the heartburn medicine and chalky drink get stuck along with the water I drank to take it.  It didn’t help, only added to the problem.

When you go to a doctor or are in the hospital, they always schedule you for a two or six week follow-up.  I went to those follow-ups and would tell them, I’m no better, no I do not have heartburn, I’ve lost more weight, and the attacks are getting more frequent. Each time from then on, I was told many different things, like changing my diet, journal the foods I’m eating to identify which was causing me “discomfort.”  I couldn’t get it through to anyone that it was a swallowing then getting stuck then bad pain then throw it up or just wait it out situation.  It wasn’t heartburn. It felt like I’d eaten an elephant and now it was passing through trying to push into my stomach.  I would have visions of snakes that eat big rodents and the outline of the rodent they’d just eaten was halfway down and I’d wonder how in the heck do they tolerate that pain?  Every time in the hospital, when asked by a doctor what it felt like, I would use Sigorney Weaver’s character in Alien, when the alien comes out of here stomach or wherever.  I never saw the movie, just saw that part.  That there was enormous pressure right HERE and now it’s extreme pain and vomiting.  Yep, must be your pancreas.

With each new doctor run in, my intuition turned to “your missing something and I don’t have an x-ray machine at home to look so your hypothesis that I’m stressed therefore I’m having nervous gut problems” is wrong.  I wish it was right, really I do, but I’m not liking your dismissive attitude and your suggestion I make an appointment with a therapist to discuss what deep seeded trauma is causing my nervous gut issue.  So, I shut up and decided not to mention it again, just deal with it because I didn’t want to be labeled a hypochondriac.  I’d already been suspected as being anorexic, but beat that rap when people close to me saw that I tried to eat and during the times my swallowing problem was not happening, eat I did, and a lot! Then I was suspected of having bulimia. Well, she’s very thin and she runs into the bathroom after eating a bite of something, case solved, she’s bulimic, lets have an intervention.  No intervention was held but my family probably all figured I was indeed bulimic and just didn’t want to hurt my feelings as long as I didn’t lose too much weight.

All this time, years of choking, begging, feeling like maybe it is all in my head, being at odds with family who felt I was a hypochondriac, that my problems were self induced and most likely because I liked sugar too much, since I ate a lot of it when I could.  Now that suggestion is correct, sugar is bad and I did eat a lot when I could swallow which probably didn’t help matters. Thousands of dollars spent at doctors, therapists who would sooner or later tell me that I didn’t really need to keep coming unless I wanted to, that they saw no mental issues. All those tests coming back “normal” you are as healthy as a horse, giving my doubters even more reason to doubt me and view me as an attention craving, nervous stomach women.

All this I put up with and lived my life as the swallowing problem revved up to pain I’d never before experienced but had no one who would really help me.  I’d been diagnosed with Lupus 7 years prior, so that was now the official diagnosis, “your lupus must be causing some kind of nervous stomach issue.”  Until that one day in the city, when I had an “attack” after eating a real meal, that rivaled no other.  Admitted to the hospital, I finally was assigned a GI Specialist.  Specialists love to do procedures, thankfully, to take a “look see” at what might be happening.  Since my pancreas was given the honor of being the cause I was scheduled for an EUS (Endoscopic Ultra Sound) to be performed by  the God of EUS’s in my state.  A GI Specialist who practically invented the EUS! He was to put me to sleep and using the endoscope go look around my pancreas to see why it was causing me problems.  What he found was a very healthy pancreas but an esophagus that was closed off at the bottom, a diagnosis called Achalasia.  Where the bottom of the esophagus is abnormal and closes off, not allowing food and liquid to pass through easily at first, and over time, not at all. Therefore severe pain ensues and food hangs out down there, fermenting and causing nausea until it either got through some how or I got sick and vomited.  The doctor wrote on my pictures of my EUS the word “achalasia?” and I was told that I may have achalasia. But, after years of being told nothing was wrong, I blew it off and was just glad my pancreas was ok. I didn’t even ask what achalasia was, but it was written next to the endoscopic photo of  a tiny, tiny hole which was the inside of my esophagus that should have been a large opening.

It would take two more stints in the hospital and a weight loss of down to 88 lbs to convince me that my intuition that something was wrong with my “swallower” later to be called my esophagus, was spot on.  I was told, after several more endoscopies to make dang sure, and other tests to measure the pressure in my esophagus to confirm achalasia, that this was a problem in the making for years. The fact that it wasn’t addressed and subsequently fixed had led to another diagnosis, Barretts Esophagus, a pre-cancerous situation where my esophagus has been fighting so long to do its job but couldn’t therefore it is pretty damaged.  You mess with something inside your body too much, it seems to develop cancer.  Fortunately I am told my Barretts is early, early and chances I get cancer of the esophagus are hugely low, they are there, but I’ve time to have it address as well as the swallowing problem which by now it epic.

There’s always that feeling of wanting to say, “I told you so” but to who I would say it I don’t know.  This was years in the making.  I can say I’m angry, I’m angry that years ago this was a minor fix and had it been found it would just be a small issue and once fixed I would have not had these health issues, I’m angry at the GI doctor who said there’s nothing he can do for me, that I have gastritis most likely and need to stay away from spicy food then told me I didn’t need a follow-up appointment.  I’m angry that my attempts to follow my intuition and get help for something that I felt was wrong was taken as attention getting behavior most likely. I’m angry that achalasia itself has destroyed my teeth, my ability to have a nice dinner or even go out to eat which I haven’t done in years. I’m angry that, through no fault of their own, friends and family felt I was bulimic or had “issues” and didn’t understand when I couldn’t come over for dinner or I was too tired or in pain.  Besides, who in the world has heard of Achalasia?! Only 1 in 100,000 people have it, a number I feel is probably higher because of people like me suffering through it and not being diagnosed correctly.

However, I am hopeful that the surgery that has only recently been developed to fix the esophagus by cutting the damaged muscles or sphincter at the bottom of the esophagus and wrapping part of the stomach around the bottom so that you can swallow will be done if I decide to go through with it.  Which, I will.

Since all this, I have fought to get the surgery, not because I don’t qualify or I don’t have achalasia, but rather because surgeons wanted to try other procedures that ended up not working.  It’s all in who ya get when you get that referral to a surgeon.  Mine, well I’ll just say he had a different approach.  But I’m free of that nightmare and soon to be back on track with the original specialists who first told me what I had and how he’d fix it.

Now, my intuition tells me that it all makes sense.  It agrees. There is hope where there used to be doubt and judgments. There is a chance for a normal life of eating food and going out to eat.  There is hope for health, no more pain, and a lot more years to make up for these last few that I fought constantly for someone to believe me and for someone to help me.  As far as the damage achalasia has caused my body, I just have to accept it and deal with it systematically.  I’m just glad that my mystery is solved and if the surgery doesn’t help, I’m going with my intuition that this is indeed the problem and I shall seek a different solution! I do not like nor do I agree with the notion that you shouldn’t speak of your health or be quiet if you are suffering, to get on Google and find that natural way to health because some things cannot be fixed naturally, I wish, but they can’t and I’m not ignorant enough to believe that not seeking help when your natural remedies don’t work is a bad thing.  Many things I’ve gone through have been helped naturally though, by naturally I mean by not taking pharmaceuticals, but utilizing natural products.  It’s just that nothing helped this, thus I continued seeking help wherever.

The moral of this story is, if you really feel they’ve go it wrong, and you are suffering, don’t give up.  We know our bodies better than anyone.  Doctors are wonderful, but there are still many illnesses and situations they have no idea how to treat or that they even exist.  Unfortunately it wasn’t my perseverance and fighting attitude that finally found my problem, it was me almost wasting away to nothing that brought me to the brink of death by malnutrition and to the attention of a GI Specialist who could tell something wasn’t right.  But the point is, it was figured out. I’m sure there will always be doubters but I don’t care.  I know what I know and I’ve got to be positive so my intuition will continue to help me when things seem off.

How Photography Helps Me

Bald Eagle
My friend the eagle

I’m not a professional photographer.  I’m a person, with a camera who happens to love taking photos of the things in my life that bring me joy or things I want to have to look at in the future.  Being ill with chronic illnesses is a full-time job. Swirling around me are doctor appointments, managing the phone calls reminding me of doctor appointments, invasive tests, pain, questions, medical bills, hospital visits, anger, wrong diagnosis, right diagnosis, trips to the pharmacy, insurance problems, explaining… lots and lots of explaining. This is along with living life as a wife, mother and grandparent trying to act like I’m just fine because everyone has an opinion, if you just keep your struggles or problems to yourself then you don’t have to listen to the well meaning loved ones constant suggestions or, sometimes their anger at you.  I don’t blame them, I understand that they love me, maybe they’re scared but trying to not act it, their life is affected too.  I know when they’re using my illness as a way to not take responsibility for bad or rude behavior or saying hurtful things as well.  I don’t care if I’m sick or 100% healthy, I have learned that if someone sees your weakness, and they know you don’t have the energy to fight, they will do and say things they’d probably never do or say if I wasn’t just too sick to take action. So, I take responsibility and suggest counseling for us.  But back to photography.

Bald Eagles
Working together

All that comes with being ill with “diagnosed conditions” which is somehow a must have for the majority of people to treat you with respect and honor your less than perfect ability to meet everyone’s needs, I found I needed something to quiet my mind and release this anger.  I’m not an angry person, I thought, but I sure have a lot stored up.  However, by getting my camera and disappearing to my favorite places to take a photo or two or 500 I regain a calm that allows me to forget the pain and all that I must handle and instead, enjoy my life. The only person I should look to, to save me or to help me is ME.  My attitude towards all I deal with is going to either make me an angry sick person with a pessimistic outlook on everything which I never liked being around, or is going to help me see that I’m not totally gone, useless, broken, hopeless and numb.  Rarely am I well enough lately to take these photo opportunities.  But, if ever I get the chance, I fight to do it because it reminds me of all the beauty around me. Continue reading How Photography Helps Me

Slowly to God I Turn

Something happens when words which form your thoughts and feelings are written down. They stay and don’t melt away like snow flakes or evaporate like rain, they stay.

This quote I’ve taken from a fellow blogger named Savannah. Her words on Faith and chronic Illness have taught me so much about positivity lately:

One Mountain at a TimeThese words I’ve written about illness, pain, situations I haven’t handled well have stayed here in my blog, to be revisited now and again. In doing so, I’ve learned a lot about myself. That I’m not the hopeful, faithful person I say I am. Instead, I’ve chosen to give negativity and the enemy my precious time and thought. I’ve not allowed the time and the room for healing of heart and understanding to take place. I closed a huge door and behind it I lived a sad, painful existence. Not noticing that the God I cried to was right there, with the answers and the love. No door holds God at bay, He’s there, but I have to realize I must look to Him instead of treading in this sea of self-pity and anger. Continue reading Slowly to God I Turn

Toughen Up Butter Cup! Achalasia, you’re The Dinner Guest that Never Left.

Since I’ve decided to journal via my blog, my journey through the maze of; diagnosis of an illness and the crazy ride after diagnosis you take, I seem to have taken myself seriously and actually written each day this week. I know that people probably won’t see the words I write. I understand I write for the purpose of getting out what festers in my brain that is full of “what if’s” and “how did this happen?” But it is actually helpful. Why didn’t I do this years ago through teenage angst or mid-life crisis?!!! Oh, because there wasn’t an Internet much less an iPhone with a WordPress App. Also, my ADD wouldn’t have allowed me 5 minutes of concentration to form my thoughts and write them down.

How I ever trained horses for so many years and worked in the high stress film and television industry I’ll never know. I stood up for myself and was a woman respected in a male dominated world. They were my friends as well as co-workers. Maybe it’s because we’re all from ranching communities where hard work and long hours were normal. I say all this because I used to be tough, tough enough to stand up for myself as long as I was kind and fair.

This week of frustration at the medical community, the surgeon, the mixups and my resulting “poor me, don’t they know I can’t swallow that delicious looking chicken noodle soup?!!” I have witnessed on the news unbelievable shock and sadness at the gunning down of innocent people doing innocent things. I’ve read a young family member’s posts about what it feels like after having her colon removed. Her bright attitude saying it is hard but she knows things will be better. And (I know you’re not supposed to start a sentence with AND) I have to say that life and the struggles that come are what you make it. I have been so totally immersed within a self-pity that would rival any Hollywood A Lister who didn’t get the table she requested at the best restaurant in the city.

I’m currently at a crossroads. I’ve been absolutely, concretely diagnosed with a swallowing disorder or rather, my esophagus is closed off at the bottom. I’m to have surgery but, by whom I don’t know because I was referred to a surgeon who’s specialty is GERD, therefore he thinks I have GERD and didn’t do the surgery. But did look in there and saw the problem and dilated it with a balloon and called it good. So I got upset, threw a tantrum in the presence of only my husband in between throwing up, and said “whaaaaaaa! What just happened?! I’m still sick! Do I go back to the doctors that diagnosed me and tell them, Hey I didn’t get that surgery you told me about but I did get some more endoscopies and a balloon!” Or, do I move on to a second opinion and hope whoever I find will look at my five endoscopic procedures and see the problem and get that surgery going?

Who knows what I’ll do. Because right now I’m thinking about people who struggle with things unimaginable. I’m an empathic person. I feel the pain of others in a way that I am not physically in the same pain but rather I hurt for them. I want them to be well, I want them to be happy. I don’t want to upset anyone, therefore I wouldn’t stand up to that surgeon during my first and only meeting with him when he was interrupting me. I wasn’t able to correctly communicate to him my symptoms because he’d interrupt me and say things like, “you mean your chest burns and you spit food up into your mouth?” No! My chest has never burned and I don’t “spit up,” I eat something then I begin to hurt horribly down between my breast bone, the pain gets intense, I end up throwing up. So, therefore where I was diagnosed with achalasia he didn’t agree, he was sure I felt burning in chest area and spit up acid. Leading to not getting the achalasia surgery. My inability to interrupt him back and tell him, “please give me a moment. No, what you are saying is not what I just said. I don’t doubt I have acid somewhere but, my problem is severe pain at BOTTOM of esophagus where it meets my stomach from the food or liquid trying to move through. It is getting worse. I feel like an elephant is sitting, not on my chest but right here, between my breast bone. I don’t have heartburn. I have taken heartburn’ medicine in case that was the problem and it made no difference. There is something that is mechanically wrong in this area, the area your colleagues identified as the bottom of my esophagus.” I didn’t get to say that to him. Because I didn’t want him to get mad at me. I didn’t want to “take up his precious time because good doctors like him are very busy and very important. Why that’s why I had to wait so long for this appointment! He’s the boss and I need to listen to him” Now how sick is that behavior?!

In retrospect I recognized that my inability to view my situation as it truly was, an important consultation to iron out all the things that must be done before surgery. To meet the surgeon I’d been matched up with. This was an important appointment, one that would set out, before me, the procedures and surgery that will ultimately give me back an important part of my life, my ability to eat and drink and not be in constant pain. But instead, I walked out of an office in the big city feeling like I’d just lost my momentum and hope. I went to the store, bought some heartburn medicine and went home. Sadly the medicine did nothing for my attacks.

What would follow is months of miscommunications, frustration, and me feeling like I’d never get this fixed because a surgeon changed my diagnosis and set me lose.

I’m sure, had I stood up for myself and brought the consultation back to my Achalasia diagnosis and the POEM surgery I would probably have had the surgery, maybe not. But I must take responsibility for my part in all this. I’m a sick, people pleasing, shy, woman who people don’t take seriously because I can’t say what I feel. What I feel is, I didn’t need numerous, repeated endoscopies within months of each other. I feel I was matched with a surgeon that does hundreds of endoscopies and surgeries, and doesn’t take the time to discuss before or after what he’s doing. I feel like a nice little market steer at the cattle auction, gate opens, I run in and around while the auctioneer hollers my worth, the gate opens back up and I’m ushered out to make room for the next cow.

And this is where I’ll leave this post, in quiet contemplation of my Achalasia, thinking about how my young friend is handling her illness with such grace and hope and thinking about how small me having Achalasia is in a world gone mad. Telling myself it’s time to stop beating up surgeons, doctors their clinics. It’s time to switch gears and discuss solutions instead of the self-pity I seem to love writing about.

I’ve completely forgot about how my Lupus affects me every day. This is good.

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

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.