Tag Archives: hope

What Does a Girl Got to do Around Here to Get Some Service?!

You know something is taking over your thoughts, your days, your life when your iPhone automatically types out Achalasia when you type an “a” and a “c.”

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88 lbs. and Not Happy

My iPhone’s predictive text ability, something I wasn’t aware of until the word, “Achalasia” would pop up allowing me to simply hit my space bar to insert the word that was easy enough to remember how to spell but how nice not to have to type each letter out! Well not really because it meant that Achalasia was a word I typed a lot. Therefore predictive text took over. A great tip for iPhone users but a harsh reality for me that this word showed up in my texts, notes, emails, searches so much it became “predictive,” she is going to type that word again. That word is a medical condition that is rare? Experts stating 1 in 100,000 sufferers? I believe that but why do I always have to have the odd or special problems? I’m special, no doubt, but this special? This isn’t something I want to be special for.

January 22, 2018 marked a year since being told, conclusively, I have Achalasia. Yet, the procedure which was explained to me as the treatment to relieve this horrible condition, the surgery the hospital GI specialists told me I would have still hasn’t happened. It isn’t because I don’t have insurance or they found I didn’t really have Achalasia. I definitely do, I’ve had all the follow-up diagnostic tests to confirm. My problem swallowing has gotten worse if that’s even possible but it is. Why? Why haven’t I had a procedure, any procedure from POEM to Heller? Well it’s because of a crazy year of mix-ups, falling through cracks, the passing of my dear, sweet sister who just wanted me to get fixed and not suffer, my missed appointments because I already had three of those endoscopies, are you sure I’m to have another? My life and my questioning has delayed my ultimate goal. But through this year I’ve become anxious, I had so many negative experiences with doctors that I had just had it. I wanted to give up and try to live with Achalasia. But you can’t, at least I cant. It’s too painful and in July another EDG (endoscopy) which was to be another surgeon’s look to make SURE I have Achalasia ended up with a balloon dilation that didn’t help and a call from the nurse several weeks later informing me the lab results were back from biopsies taken and I now have Barrett’s Esophagus. This Barrett’s thing I’m frankly too tired to explain but I will say that seven months prior I didn’t have it. Could waiting so long, and putting off the surgery be causing me more problems that are serious enough to get it done already! I don’t know anymore.

methin
So Thin, So Sick

To be fair, I’m at fault for canceling and bringing to a halt the follow up consultation with the surgeon who didn’t do a surgery to fix, but did repeat diagnostic endoscopies to look for himself. He was to be the surgeon who would do the Achalasia surgery but he didn’t have all the results from the previous EDG’s and EUS’s and barium swallows and CT scans, etc. So I was to learn that more procedures would be ordered so he would have the important information he needed to proceed.

However, my husband and I were about to experience his interrupting first consultation, leaving us feeling like we’d just experienced the ultimate “minimization of your symptoms. You’re not that sick and I know why” consult. It was a “no you’re not going to tell me what you are suffering from, I’m going to tell you and it’s going to be based upon questions I will ask and will answer too because what you are saying isn’t what I think you should be saying….. you aren’t throwing up, you have acid reflux. That extreme pain you’re feeling, the one when the liquid is trying to move through your esophagus but can’t and it feels just like your pancreatitis pain? That’s heart burn. ” By the way, after leaving I tried heart burn medication I purchased myself just in case that was it! But it wasn’t going to be that easy. That medication did nothing, absolutely nothing.

When I woke up from the EDG he did, I experienced another traumatic procedure and another rude, dismissal.

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I’m On My Way Up

So the fact I have just had it with the medical establishment is an understatement. But I have to say, there is always hope. I’ve drawn on that hope, remembering the three different specialists in agreement and informing me that finally, they’ve all found what I was suffering from. It’s their consultations I cling to. I believe them, and I cancelled further visits with the surgeon and have decided to wait and see the original GI Specialists who give me hope. Even though one of them rushed into my hospital room after a week’s stay of pain and worry to tell my husband and I, “I looked at the EDG and yes, my colleague was right, Achalasia! I have to run, I’m picking my wife up at the airport and I better not be late or I’ll hear about it!” We looked at each other and fortunately his phone was charged enough to Google Achalasia so we would know what it is.

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Bring on the Chubby Cheeks!

These doctors that found Achalasia need to see that I didn’t get that surgery. That I’m worse and quite frankly I’m afraid of doctors and hospitals because I’ve learned some hard lessons through all of this. That you can tell them your symptoms all you want but it just takes one doctor or nurse to doubt you and prolong your agony. But it takes just one doctor who sees you lying in a bed, wasting away, to take a moment to sit down and talk with you, not to you, but with you. Not rushed to speed through your symptoms, but to look you in the eye and you know they’re listening and not interrupting you. You relax and you finally tell your story, history, and your hopes. Having a doctor ask you, “what is the worst part of your sickness this visit? What do YOU think could be causing this?” Then they calmly go through a list of legitimate questions allowing me to answer and finally you hear it, the only thing you honestly want to hear, a true, sincere quest to help you, “well, we are going to do everything we can to identify what is causing this. Hopefully we will be able to and if we can’t I know of another specialty hospital that has more diagnostic tools we may refer you to.” Music to my ears, a feeling of relief like no other, instant tears of gratitude and sheer exhaustion once he leaves the room. I dropped my head down and sobbed, he heard me, he’s going to try and get to the bottom of this. Thank you Lord for this doctor.

This is the doctor I have an appointment to see. The specialist in a group of specialists that know their stuff and I trust. Saying I trust a doctor is a huge step forward for me. I honestly am afraid to go to a hospital now. I’m afraid of procedures. I’m just afraid of the very people who are trained to heal us. I’m not going through my entire story why, but it’s well founded fear and I now have an advocate with me at all appointments and hospital stays. I honestly could write a book about my experiences if I was a writer, but I’m not.

I have come a long way from my many years of health and active pursuits. Training, raising and competing with horses, working in film and television with animals to working for the judicial department in my state as a judicial assistant (law clerk, bailiff, judge’s assistant). To the year I became very sick and told I had to stay in the hospital for days. Since then I’ve been diagnosed with a lot of things, all wrong. But I don’t blame anyone, they did the best they could do with the tools they had and sent me on my way. From pancreatic cancer “possibility” from dark masses seen on a scan to a simple case of “gastritis” diagnosed once that mass disappeared. I’ve had my shares of highs and lows.

I'm Getting ThereI just guess some of us must take the long way round to get to our destination. Others get there quicker, for whatever reason, it doesn’t matter and like I always say, it’s not so much the journey but rather the destination. If you arrive at your destination that hope and tenacity fueled you to, that’s the blessing. I’m almost there, and everything before this day will just be memories of the situations that taught me patience and made me grow as a hopeful, strong person who doesn’t feel people don’t want to help you, it’s all about the money, rather they do want to help you and by doing so they earn that money.

My story isn’t over yet, I’m sure there’s more ups and downs to come, but that’s called life and life is precious. I’m holding at hope, this Achalasia thing will someday be less of a concern of mine. I’m pretty sure about that.

How Photography Helps Me

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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

REMEMBERING My Family SAVED Me 💙

Source: My Family SAVED Me 💙

This is a post I wrote in 2015. About my sister and brother in law. I lost them both, my sister in January and my brother in law the year before. I never dreamed they’d be gone so soon. I never dreamed I would lose them. Family is forever though

Meaning in my Mornings (my mornings are mean)

I said earlier, struggles will come and go, it’s life and this particular struggle has entered my mornings in the past year. It has taken me almost a year to search for meaning in it, because I have to always figure out what the heck?! Why this?’ if I’m the only person who feels this in the mornings, is there a fix? So, I finally Googled “morning depression” because that’s it in a nutshell. I’m awakened every morning in a horrible depression. Usually I’m sweating, in pain, almost paralyzed from even turning over much less putting my feet on the floor and trying to wake myself up from this horrible experience.

Once awake, and when I’ve managed to sit up for awhile, about an hour, the whole event, the depression, sweat, pain fades. On its own, without even a sip of water, it fades. Every single morning.

I’ve prayed before falling asleep that my morning will be normal, my old normal, where it just takes me a bit to wake up, my joints are sore but I’m used to it. I would always greet morning with anticipation of what the day will bring, what needs to be done today, etc.

But, this morning depression has pushed its way to the number one issue I dread, edging out the Achalasia pain when you can’t swallow and everything Lupus. Beating myself up has become a daily exercise.

However, I’ve felt, in my heart, that I need to find reasons followed by SOLUTIONS for this morning depression. Not the old me, where I’d find possible reasons and continue on searching all the bad, sad, negative stories, thus bringing me down even more and pushing that hope I’ve always had so far back in my mind that I felt no hope. I would just feel that this was yet another rotten symptom of my illnesses that I had to learn to live with.

That’s the difference here, an uncomfortable symptom appears, throw my hands up and say, “why me?! Really?! What more can happen?” Never say that, because something more can happen and you’ve (me, this isn’t a “how to handle things” blog, it’s me writing for myself. Getting it out, to revisit when dark days roll through) set yourself up for continually feeling as if you’re being punished. I’m not being punished, I happen to have Achalasia, systemic Lupus, and with these illnesses come symptoms, and with these symptoms come the challenge to identify ways, if not a cure, but at least to learn why and how to make them easier to deal with. Knowledge is power, with this power comes hope.

So, back to this morning depression thing. Since I’ve learned to research with a positive mindset instead of searching to find reasons to feel hopeless, I’ve been figuring out what may be happening and attempting to write things down to compare what might be leading to this. I’ve found an entire group of people who deal with this and the reasons, the research being done, how my current illnesses may be leading to it and how to try and change my nutrition or medications to see if I can ease it.

Continue reading Meaning in my Mornings (my mornings are mean)