The Long Journey to Be Honest with Self

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. 

Home from the hospital & posing with the grandsons!

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. 

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