Tag Archives: Lupus

Arriving at Acceptance, the Stages of an Illness

 

EmusedoneWith this new year has come a strange calm. A feeling that the control I thought I didn’t have I’ve never really lost. That being a healthy, active wife, mother for years to suddenly a disabled shadow of a person wasn’t because an illness came and took over, taking my control with it and making me a useless burden. But rather I was never promised the perfect life without struggles, and that is a good thing. Because it’s honestly is through the struggles of illness I have grown to be a better wife, mother and now grandmother.

There are hundreds of books by inspiring writers who are soldiering through illnesses, situations, troubles. On any given day I can turn the television on and accidentally end up watching an inspiring interview of a person who is beating the odds and thriving during adversity or scroll down my Facebook Newsfeed to see more inspiring stories, situations that are far worse than mine could ever be. It’s during these moments I realize that had I not “gotten” Lupus or struggled with Achalasia I think I would have just turned the channel, or just kept scrolling down my Newsfeed until a funny video caught my eye or a new recipe looked like something I should copy down. That my illnesses have made me more in tune to others. Their stories inspire me, some break my heart, some anger me and push me to join the cause. My illnesses opened up a world, one of compassion, understanding and strength. Continue reading Arriving at Acceptance, the Stages of an Illness

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

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)

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.

Honesty, Age and Loss

Wow! I’m catching up on my blog! But when the ideas and feelings finally come it’s important that I get them out (I’m told anyway).

In August I had a very BIG birthday. Not a big party, but the number is a big one. Why I won’t share that number is my own problem. I should be thankful for this many years. I am, I just don’t need to share it.

I do love this age however. Like my sweet mother told me long ago, the older you get the less what people think of you matters. So, is this true? For me I have to say YES. But, strangely so, I continue to try to please everyone, tell them what I think they want to hear, allow others to use my inability to say “no I will not come out and fix your computer.” I only have myself to blame though. A simple, “I’m sorry but I’m not up on these new operating systems, I’d do more harm than good” would work better than getting upset that there’s always a reason for the call and it’s not to just say hello and invite me to lunch. I run around helping everyone with whatever they’ve asked of me. They all know I’m sick. They all tell me to take care of myself and be good to myself. But I’m needed (I can fix computers!) so that makes me feel I have a purpose I guess. Yes, at this age I care less of what people think of me BUT I continue to try to please everyone to the point where I make myself more sick by stressing to get there and fix something.

I decided to try something new, to actually ASK a friend for help. It was tough to get the nerve up to do so. But not only was I needing someone to talk to, a part of me felt curious to see if 1.) I had the guts to ask for something and 2.) they’d say yes or would help. So, I finally told my close friend that I’m depressed and in a dark place. I’d never struggled with feelings like this before and didn’t know how to help myself. That this Achalasia thing was taking a real toll on me, more so than Lupus ever had, and I’m spinning my wheels. I texted her actually, because I didn’t want to call her in case she was busy, or interrupt her day (a huge part of people pleasing is never be a burden….my own take on people pleasing etiquette). Texting always seems like a sure fire way to communicate with people and not “interfere “ with their day! Yes, I know, I’m doing that “caring what people think of me” thing I said I don’t do since I’m older now. So I texted her my big “I’m depressed…” share.

She texted back later that day (see, I knew she was busy or she would certainly had gotten right back to me since I never talk about myself but instead I make light of everything, and joke around about this symptom or that. When my truth is, I’m hurting, afraid, exhausted and at my wits end) and her text response was, “just hand it over to God. He knows your heart.” followed by a request to come visit her and could I fix a technical issue they’re having with a computer.

Continue reading Honesty, Age and Loss