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!

My flowers from my husband next to the cross that reminds me I'm so loved
My flowers from my husband next to the cross that reminds me I’m so loved

I follow a young lady’s blog on here who has battled an horrific journey with a very sick pancreas.  She’s young, beautiful and loves the Lord like no other and seeks Him in all things. Her wisdom is beyond her years.  I don’t really like to use the word, “inspiring” because I feel sometimes it’s used too loosely and when someone has told me that I am inspiring I feel like such a hypocrite. Plus that’s quite a bit of pressure to put on someone like me, do I have to keep this “inspiring” blog up?! Because truth is, my inspiration went South three years ago and hasn’t written back or contacted me in any way.  If they only knew how I really feel.  What I really look like when I’m struggling (view image one).  Which I’ve been doing daily now for three years.  That I am NOT the smiling lady I portray myself to be on Facebook, all full of humor, optimistic about my illness, positive through and through. NOPE, not me.  I’m a lady who is afraid, sick, confused, angry, then not angry, and I like to say, I’m a walking contradiction.  I don’t live what I say, I say what I THINK people want to hear and to be liked. How could someone “like” (as in thumbs up) a person like me who is half of who they use to be. Who no longer contributes anything to society because they’re too busy being sick. Who used to do so many cool things, do them well, and had a full life of mystery and intrigue. Who would be the cool grandma taking her grandkids on adventures like I took my daughter on. The wonderful wife, making the best casseroles ever on her Jen Air stove. Having dinner parties for our twenty dear friends and sharing our slide show from our mission trip to Uganda. That was not to be.

But, after reading that young lady’s blog this morning, I see that she, too, is struggling.  That she too, gets depressed.  That it’s unfortunately NORMAL to seek God in all things, live your life loving a Loving Father, yet personally have times you feel alone, depressed, miserable.

A HONEST selfie....
A HONEST selfie….

She and I have bad, sick pancreas problems.  Hers are quite a bit worse and she has weathered operations that have saved her life but tested her spirit, taken away many things a young woman like her should be able to enjoy. She is out of the hospital, trying to put her life back in order, an order she is searching for.  There are no books, videos, nothing that tell us how to regain a somewhat normal existence when we’ve fought for our lives, lost so much in the process, and have an uncertain future.  You can have the Faith & Grace to KNOW God is with you, but still have tough, tough days.

I read her story and suddenly the anger leaves me and I am thankful that I got to go to college, that I got to get married, work the many careers I had, have a beautiful daughter, and live the first 42 years of my life with virtually no problems I couldn’t get through and only filled with joy, love, family and friends. No illnesses that were considered chronic, just broken bones from my many pursuits. However she was stricken down by her pancreas during college. Following her dreams. She truly is an inspiration to me. In that, in the midst of my pain, when I’m feeling scared, or like I was dealt the wrong card, or I had purchased a ticket to Hawaii but ended up landing in the Antarctic (thank you, you know who, for that analogy, it’s a good one) that I’ve many, many blessings. Many, many wonderful life experiences. I will never have to wonder, “what if things had been different and I didn’t get this illness when I was 18? How would my life be different?” But I’ve no doubt that she will prevail and her Faith will propel her forward to many wonderful life experiences. That this is an unfortunate bump in her road, but her Faith, her honesty will help her live the best life ever.  I’ve always said that my greatest pleasures have come when I made others happy, made them laugh, or made them feel better.  I want her to know, she’s helped me out of the dark hole I’ve put myself in out of self pity. That as bad as I might think things are, there is always someone, somewhere, struggling ten times harder or dealing with untold sadness.  That I need to see my blessings each day as well as my struggles.  So thank you for that.

cardSo this is my HONESTY BLOG. This is my truth. I’m afraid. I have Systemic Lupus, yeah, and I have been able to deal with it.  But this pancreatitis thing has taken on a life of it’s own and is really attacking me.  My friendly smile is gone, I am miserable and worried. I am a skinny, little remnant of myself. I’ve been lost, frustrated with the healthcare system and near the point of just giving up and allowing my body to do whatever it wants, no more doctors, no more medicine.

BUT, I am thankful that I had my most recent pancreatitis attack in the city because I ended up in a hospital where they took excellent care of me and called in the BIG GUNS, the GI specialists (I never got to see specialists where I lived, I only got the “thanks for staying nine days in our hospital! Go make an appointment with a specialist when you get home) I did, and two months later finally would get to see him and nothing ever got done.  It was, oh I see you had a pancreatitis issue.  Well, eat a low fat diet…… that’s it.

I'm unhooked! But not totally
I’m unhooked! But not totally

THIS time, the GI specialist came to me, in the hospital.  They viewed the CT Scans and Ultrasounds themselves. They found a “mass” at the pancreatic duct. WHAT?! Yes, but don’t worry, we are going to do what it takes to determine what it is, and help you. You are?!! So at a time I should be frozen with fear of the “Big C” I’m thankful, grateful, relieved……. someone cares. They are going to follow up and help me. Someone is actually going to HELP ME!!!! Those specialist are excellent in the field of EUS, endoscopic ultrasound. I spent eight days in that hospital and it wasn’t fun at ALL as if hospital stays are suppose to be fun. But I had found myself, once again in a hospital with horrendous pain in my abdomen and afraid it would be like every other hospital stay, a lesson in patience, cluelessness, hunger and frustration. That they would take nine to ten pokes and three techs to find a vein to take blood or hook up my IV. That I would be very sick, and eating ice chips while being whisked away for MRI’s or scans through long hospital hallways and being told to hold my breath. Knowing that I’d most likely not be informed of the findings. That just was the history of my battle with chronic pancreatitis. I always was admitted then forgot about. Until I would finally ask a nurse, “when can I go home?” and someone would finally realize, Hey the lady in Room 205 has been here over a week, who’s her hospital doctor? Then he’d appear four hours later and I’d get to meet him finally and he’d ask me, how do you feel? I feel GREAT!! Can you eat anything and keep it down? YES! This cracker! Watch! Well done, I’ll write up your discharge instructions, nice meeting you. Bye! BUT, this big city hospital was different. Refreshingly so.

“Discharge….not sure”

I didn’t much like the fact they watched me like a hawk, measured my intake, out put, everything (like they’re suppose to I find out). They DID take blood every single morning with just one poke! My IV was perfect and never hurt. When the bag of whatever it was was empty it didn’t beep for an hour before it was changed. Someone came in and changed it! I never felt so taken care of in my life. Now, if you Google EUS, or pancreatitis issues you are going to find the most negative stuff from people who see it as doom, you’re a goner, doctors suck. BUT, I’ve had bad doctors, and I’ve had good doctors, and I know they are my only hope to figure this out and to help me. I’ve been losing so much weight again I was scared and the local doctor didn’t seem too concerned.  Matter of fact, he said, “well you haven’t lost that much weight so I wouldn’t be too concerned.” Um, listen Mr. Doctor, I know we’ve only just met because my wonderful Internist has retired, but I’m not suppose to weigh 92 lbs. when I weighed 107 lbs. two months ago.  I’m not suppose to lose weight when I’m eating so much. I almost died two years ago when my pancreas went haywire and I lost down to 88 lbs.  COME ON! You really think the fact I worked hard to get back up to 107 lbs. and now it’s all gone is nothing to be concerned about? So, I left there feeling defeated. I felt like I have something wrong with me and I’m just going to waste away and die one day. That if my doctor doesn’t think I have a problem with my Lupus and Pancreas and won’t follow up, what am I to do?! I could find another doctor, but then I’d have to do the whole records release, not a big deal, but my luck they’d be best friends and the new doctor would concur with the old doc. It IS a small town.

My saving grace, Boost Breeze!
My saving grace, Boost Breeze!

SO,  I truly believe God put me in the right place, at the right time, to end up with this GI Specialty group.  I’m going to have that EUS. I’m going to deal with whatever it is. I’m going to have that young girl on my mind and her optimism during her tough operations, and long scary journey. I’m SO thankful that I know that I am loved by a loving God who sent His son to die on the cross for my sins. That whatever my outcome is, I know where I’m going. I know that as long as you speak of the many wonderful things Jesus tells us, I can share those with my grandsons so that they will grow up knowing we aren’t just on this earth blindly running around, but that we are the children of the Most High God and our hearts are filled with love and compassion because his plan is perfect. I’ll still get angry at times, I’ll continue to have scared moments, and I will complain here and there, but bottom line my truth is, I am human and imperfect but LOVED regardless.  I’m where I’m supposed to be.  Thank you Lord.

Why? Because I can....
Why? Because I can….

6 thoughts on “Let’s Be Honest….Rowing My Boat”

  1. Susie, this is beautifully written about your struggles with ongoing illness. What a inspiration this blog is to others that too are struggling with issues.Much love to you, Donna

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