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
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.
These 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.
In the past 4 years, it seemed like I was under attack. I would mutter under my breath, “why does God want me to hurt like this?” Feeling all the losses and disappointments were some kind of punishment for not being a better person or because I’d broken some rule. But I never spoke TO God, I guess I thought telepathically He knew. I know God knows our hearts, He knows my thoughts before I think them and lately I’ve begun to turn to Him, honestly and with purpose I have begun to turn around and feel His presence in my quiet hours, and there are many quiet hours. My prayers I pray each day are filled with sincerity and aren’t prayers that are scripted with all the right words, spoken as if I was reading them from a book on Prayers Examples, as if there was such a book. Or nice quotes that have popped up on my Facebook news feed as if God is trying to reach me via Facebook, letting me know THIS is the prayer you should pray. I don’t think so.
All the situations, the disappointments with canceled appointments, mixups with doctors, nights sitting up in pain, days staring out this same window, that have manifested themselves in blog posts of negativity and complaints, that fell like rain into these posts and never evaporated. Instead they stained where they fell. They’ve stayed as a reminder of just how much I’ve not understood that God has been right there, patiently waiting for me to look to Him and to see that I have a purpose on this earth. I can choose to hate my illness and spend my days on earth in negativity or, I can understand that, just like the 40 years before I became ill I lived loving life and my Creator and lived wanting to be an example of His unconditional love. That maybe, just maybe these struggles were given me because I had the strength to carry them with Grace and most of all, with Faith. Faith that yes, I hurt and my life may seem like a daily struggle and sad, but rather it’s the life of a person who was created to be an example to others. The very title of this blog, Praise You in this Storm, had finally taken shape and sincerity.
Of course, from the looks of what I’ve written in previous posts, I am far from a person living my life with Grace and Faith. But for whatever reason, I’ve recently been in a constant dialogue with God, turning my thoughts around daily from the usual negative patterns to finally speaking to God and honestly feeling I want to enjoy this day and I’m so thankful I have it. I’ve started my days telling God, “Lord, today I seek you in all that I do and I thank you so much for this day.” It’s not some exercise in whether positive words and prayer can change the pain or take away the struggles. It’s an honest feeling I’ve gained that is more pure and true than anything I’ve felt.
These are victories, victories in gaining a purpose so much larger than being a good example to others. They are victories of finding myself again, that person who truly is thankful for all things. A person who wants others to see that although I have illnesses that have changed the person who was 20 years ago, but hasn’t changed the heart and core of the positive and helpful person I used to be. Yes, I took a lengthy detour and wasn’t a positive person. The smile that people always enjoyed seeing in me had faded but was coming back, is coming back.
life is a gift, no matter how it’s wrapped
Why has this happened? What profound event has opened my eyes to my truth of who I am and what I feel my purpose is? I can’t say, all I know is I’ve had many trials lately and I’m amazed I’m still able to smile, to laugh with people close to me. That life is a gift, no matter how it’s wrapped. That no matter how old I am, where I’m at in my life, my grandsons are watching me. I’m still an example. Not only to them, but to others who may feel as if they’ve no purpose, that maybe if they weren’t on this earth it would be better for everyone. No, it would be a huge loss, that being a person in pain isn’t a punishment, it’s not even a test, it’s a situation that no one is immune to so carry that pain with Faith. That pain proves I’m human, I’m fragile and that by my actions and words I can show others, who may be hurting, there is hope, that there will be better days, followed by tough days, and that living with pain requires strength. You have strengths. My strength I have found in the Lord.
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:
So today I set out with purpose, an unconscious knowledge that life is to be lived, and living to me means a positive journey given me by my Creator to either enjoy and learn from or to waste away the beautiful blessings that surround me. It is doable even as I struggle on days I can’t get out of bed or my brain just can’t get it together. That these are snippets of pain that can make or break me. Because when I come out of the fog of unrelenting pain, a blessing has always been waiting to hug and hold me and to make me smile.
I waited to write this, thinking I just had a good day or a fairly lighter stage of pain week. Of course I’m going to be all butterflies and blue birds singing. I’m not bent over the toilet throwing up. Of course I’ll be full of optimism so let’s hurry up and write this down and share it. But I know better than to write blog posts when I’m in an emotional high or low. I write in draft and wait days before deciding whether to publish it. However this realization has come on little by little and has stayed. I’ve been growing in the knowledge that I, Susie, am a Child of God, loved and cherished. It doesn’t matter if a doctor or a receptionist is rude, my goodness they see many people day in and day out in some form of suffering and it’s their job to fix them. What matters is I’m not defined by my illness so why do I allow it to ruin each day so easily that I stress at how people I don’t know react towards me. They don’t dislike me and want me ill, they don’t know me. Maybe they, themselves, have struggles I could only imagine. I walked into a recent appointment laughing, and left feeling as though I was a nobody, hurt, sad, quietly sitting in the passenger seat feeling no hope. Now that’s how strongly the enemy can turn a situation around so you begin to doubt your Loving God. Making a small situation into a negative reasoning that no one cares, not even God, and I might as well just give up. Oh not today, that is the time to fight the enemy and prove to yourself (that is who matters here) that what I read in my Bible is the word of God, and He will never leave nor forsake me. That is my truth and therefore I must turn it around. And so the journey begins again of faith by grace. By the way, laughter has the natural ability to release pain relieving endorphins. When I laugh, my soul is lifted. When I pray, my soul soars. I know tough days are ahead but knowing they are and dreading it to the point of paralyzing sadness or knowing they are and that I am created to be strong, that the troubles will pass, just pray, is what has changed me. I’m human, I will stumble and fall. But, I will get back up with the help of my Creator and all the people who love me and I love them. This blog post I will read again I’m sure, and hopefully it will remind me of my strength and how God is my Strength.
So worth it and God thank You for your patience and your guidance. You truly are the God of all Comfort.
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.
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.
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.
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.
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!
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.