a day in the life...

Over the years, I have been asked so many different questions about my chronic illnesses, my surgeries, hospitalizations, my childhood with illness, and so on. But one consistent question I have been asked is something to the effect of "What is it really like living with chronic illness?". 

And the answer to that question really will be unique to each and every person with chronic illness. Even if two people have the same diagnosis, I can almost guarantee you that their experiences will be different. Sure, there will be similarities and can relate to one another, but their experiences will be their own. 

I have thought long and hard about what I might say in a post like this. How do I put what its really like to be me, in words that are relatable and genuine...but not depressing. Because depressing wouldn't really do my experiences justice. It's more than sad, its more than frustrating and its more than positive attitudes and faith in God and his will and plans. 

How do I describe my experiences? Well, in short, there is no simple or perfect way.

 I figured a good place to start might be to just describe what my days look like, right now, living with my chronic illnesses. I emphasize 'right now' because what I'm going through now, is so so different than even 6 months ago. Good and bad. 

So. Each day I have a very extensive and specific medication regimine. Not including my diabetic injections and routines, I take over 40 medications twice a day, each day. My dream is to one day not need all of the medications, but to be honest, they save my life. I can't run from help. I spent a lot of my younger years doing that. In my hoping and dreaming that I didn't need all of the medicine, I actually probably made it worse. That was a tough realization.

Anywho, what was I saying? Oh, yes. A day in the life of me. Not too exciting but you asked, so I tell. :)

Not all pictured. Just to give you an idea. 

I get up, take my morning meds by a certain time. I then take my blood sugar, prepare the long acting insulin via syringes and then the fast-acting insulin, separately. And before you ask, yes I have been evaluated for an insulin pump and will be trained on a new one soon. However, that will only take care of the short-acting…the long-acting is separate. Exhausting and wordy….I KNOW. 

So then. I have to eat within 15 minutes of all the insulin. BUT before then, I have to take enzymes to digest my food and  to get any kind of nutrients out of my food. I don't have a pancreas…the pancreas produces these enzymes along with insulin….you get the idea.

And that is with every time I eat too. Blood sugar testing, insulin shots, and enzymes. 

I have to write down all these fun blood glucose numbers AND how much insulin I am treating these with. Also, I have to write down all I eat and count carbohydrates like its my job. I then have to fax this information to my doctor every 3 days because I am such a brittle diabetic. My insulin dosages change frequently.

I know. EXHAUSTING. All consuming. I often wonder... 'when will I ever think of anything other than BG numbers, carbohydrates, insulin, are my numbers too high or too low?' and 'Oh GOSH am I going to pass out in public??' (that's embarrassing and happened a couple of times, BT-dubs)

Blast. Are you tired of this game yet? Oh, its not over. Rest your eyes, get a cup of water, check your facebook and then feel free to rejoin me.  :)

So. As some of you may know, I have what is called a PegJ tube. This is a surgically placed feeding tube placed in my jejunum (top of the intestines). I have this because of my chronic ulcers, malabsorption and some other digestion issues. I have to have my nutrients and hydration placed in this tube. This is a semi-permanent tube.

the BOXES of medical supplies and medications. Yes, boxes. 

I have never talked about my J-tube on my blog because honestly…I am very self-conscious about it. Its not exactly glamorous. But hey, I'm over all that now. Hey world! I have a J-Tube! Aren't I the coolest?! Yeah. You know the answer to that.

Boxes of medication/nutrition for J-tube

Anywho, I have to take very careful care of the J-Tube because the J-tube is in a more sensitive place then other feeding tubes. I am at a higher risk for infection and perforation (fun, huh?). So I have to change dressings at least twice a day and flush the tube 4 times a day. Awesome.

Not to mention, actually running the tube which attaches me to a really neat IV-type pole thing-a-ma-bob.

After I make it through a day of counting, cataloging, and taking medication….I then transition into night mode. Which basically means REPEAT all of the above. No, I'm not kidding.

Sometimes, its more exhausting being out of the hospital than in one. Obviously I would prefer to be at home but it is definitely a full-time job right now. Some of these things will change and get easier and some of them won't. 

I just do what I do, do everything I can to keep myself healthy and leave the rest to God and the doctors. 

So that's that. Its definitely overwhelming and somedays I totally fail. Like fall flat on my face, FAIL. But somedays, I seriously verbally praise myself. Because come on, its an accomplishment! Yay me! 

I am just grateful that there IS something I CAN do to make my situation better. Is there a cure? No. Will I probably be back in the hospital some day soon-ish? Maybe. Most likely. 

But that's okay. Today, I have faith that God will equip me to handle those issues and struggles on that day. 

A reason to smile. 

And this picture…just to make your day. Because it. is. pure. hilarity. 

Josh's 30th Birthday Dinner! Bahaha. 

I have almost made it to Christmas without a hospital stay! Let's do this.

living abundantly,
Dana 

check out the new digs...

So I finally decided to update the ole blog's look! I figured the old girl deserves a makeover after being such a loyal and dedicated friend for these past years. ;) 

So Yay! Exciting! 

I decided to keep it simple and clean, nothing too busy or hard to read. I hope you like the new digs! 

I'm also planning on doing some more update posts along with the updated new look. So get excited! 

I have much to update all of you on and of course lots of stories and such. :) 

Wooohooo blogging!

So take a look around and check back for more updates and changes! I am still working on some things, so if you have any suggestions - leave a comment or email me! 

living abundantly,

Dana 

tour de hospital

So lately I have decided to take a lengthy and complete tour of all the hospitals within a 250 mile radius from my home. And I plan to do this as a patient to, you know, get a real feel as to the quality of patient care and facility efficiency. 

I know, HOW FUN RIGHT? 

Its been a real bag of chuckles and fun. 

So obviously I am being painfully humorous and sarcastic as a way to somehow make you not feel sorry for me. Haha. Because even I want to throw a pity party for myself. Like a really big pity party. I will invite everyone I know and even peeps I don't know. Like all my Facebook "friends" too. Everyone come! Don't forget the Whine and cheese! 

Sincerely, Negative Nancy. 

Okay, we got that over with. Now with the medical and life update for my family and friends that so sweetly express concern and follow my ever winding medical story. The ups and downs are surely making even you get a little motion sick. But you have been so dedicated to my family and I. You have continued to pray for me and love me...even though I am so undeserving and at times, ungrateful. 

But I assure you, each of you mean so much to me and I continue to pray for all of you and your struggles and fears. Because we all have them. None of us are immune, unfortunately. 

It seems I have drawn one of the shorter straws when it comes to health this year (not THE shortest, but pretty short-ish). 

Geeeez you guys. I cannot pretend that I am not frustrated and at times really sad. I am in the hospital again as I write this and I have been SO much this year. For so many different reasons. I have been in and out of the hospital for weeks at a time - pretty much consistently since last spring. 

I have missed every holiday, birthday, and everything fun this year. I live in a hospital bed and my friends come in the form of nurses, doctors, and my very dedicated family. I am grateful for good care and that I am still here. I really am. But guys..I want to LIVE. Really live. 

You see, when you spend copious amounts of time in hospitals, you have time to dream up big dreams and write down goals and lists of fun things you want to do "once we get past this hurdle". But the hurdles keep coming and the hospital stays never stop. 

I want to drive my car again, to go to the grocery store and shop for myself, go visit friends, get a coffee  and read a good book (not while in a hospital bed), be present at friends' birthdays and fun life events, I want to go out to eat!!, I want to take my bike and ride in parks again, run again, use the degree I worked so hard for..I want to work! Yes, I dream for these small things. I dream for the "normal" life stuff.

I know we all have struggles. And at times, this is comforting but mostly it just breaks my heart. I don't want anyone to struggle and suffer like me. If it were just me that had heartbreaking setbacks, fears, and dreams unmet…I could take it. Its just knowing your heart is breaking too…that breaks mine even more. 

But I do believe that our God is bigger than these hospital walls, bigger than financial burdens, bigger than life lost, illness, relationship stresses and all human suffering. 

He has given me dreams bigger than this life and a heart that cares for others. I know He hears me and has not forgotten me. But most days, I feel forgotten. 

So I am humbly asking, if you pray, please pray for my spirit. Its pretty downtrodden. 

A prayer for you and me…God please continue to give us strength and that our faith will not falter on these tough days. I know we all live with fears and heartbreaks of our own. Whether big or small, suffering is suffering.

 I cannot hold it together without faith and the precious people God has put in my life. I am so grateful for those people, especially on days like today. They help me remember that God has not forgotten me and never will. 

living abundantly,

Dana

Health update for everyone. Oh, and a few words on hope.

"My flesh and my heart may fail, but God is the strength of my heart and my portion forever."

 -Psalm 73:26

Disclaimer: I am not a Bible scholar. Phew, glad we got that cleared up. Anywho.

I'm an upfront girl, pretty direct, you see. Writing is my way of working things out in my mind and heart. An escape. Kind of like a runner, its their time to decompress, to say (even if it is just to themselves) whats going on in their heart or to just distract themselves. Anywho, writing is my thing. (It also helps to update all family and friends on the dana sickness rollercoaster.) 

My putting this scripture (See top of page: Psalm 73:26) up does not mean that I am totally cool with my crippling chronic illness. No, its not cool at all. In fact, I'm pretty ticked and exhausted.

BUT I believe every beautiful word of these promises in this scripture and all scripture. They are the promises I hold dear to, the promises that I whisper during long nights in the hospital or during pain thats uncontrollable. 

These are our promises that were made years and years ago specifically for me and for you too. Pretty cray cray, right? (Yes, I used cray cray in a sentence) I put all my stock in that all this pain and suffering is NOT for nothing.

However, I'm struggling. Is it wrong to want normalcy? Is it wrong for me to lose sight of these promises? To lose faith? To wonder if somehow I was forgotten and left here alone to deal with unimaginable circumstances?

But I can't lose my hope in the Lord. Its all I have. Oh God, please help me. 

This is me, honest, raw, and in so much physical pain. God knows me and my struggles and doubts and loves me despite myself. But I need hope, God. And each second that passes, I lose some more hope.

I need You. Please.  

I am a real person. I do not handle this perfectly and with "such grace". I struggle every second of every day. 

And what breaks my heart even more, is that there are so many others in the world that face this same holding on to dear life for hope due to this tough life stuff. God, I beg of you, heal our hearts and restore our hope so we can forge ahead and overcome these circumstances.

Sweet family and friends, please help me not to lose heart. And I pray that same prayer for you too. We can't lose our hope. ‪#‎chronicillnesssucks‬

P.S. I apologize if this doesn't make sense. I am awake and cannot sleep and I needed to lay down my burdens/share my burdens with loved ones. Hopefully, this will encourage you to do the same. We need each other. We need our communities. Hold on tight and love with all you have. 

living abundantly despite this admittedly horrible day/weeks,

Dana

truth in heartache

(via pinterest unknown source)

My Casey (best friend), who knows me best, sent me this the other day. 

How true this is for me is really unexplainable. I can only imagine how true this is for each of you too.

Maybe yesterday's post will help you understand if you are new around here. I can't go there today. :) 

living abundantly,

Dana 

getting honest

I always try to be as real and honest as I possibly can on this here blog. It's my space to share my heart and I feel that this is my platform (however small or big) and I am not afraid to share my journey.

MY journey. Not to be confused with others' experiences with chronic illness or anything else. :)

 So Imma get real about getting real.

Being "real" is hard. It means humbling yourself and letting people know that you aren't perfect. That you don't live your life like some novel or movie with a perfect ending. That you don't handle every situation with grace and love. That you struggle with faith. That you cry out to God and ask"WHY?" and when you get no answer, you feel heartbroken and lost.

But I feel in order to relate to others, in an authentic way, we must be honest. Since I have chosen to share my story, it might as well be a memoir and not fiction.

So. Real. Honest. Chronic Illness.

Being REAL and HONEST means showing my dark. Showing the days that are hard. That I don't "choose" joy every moment of every day. That I am not always grateful for this experience. That sometimes I get MAD with God. REAL MAD.

Yeah, I said it. I get mad with God. But more than angry with him, I go all cold shoulder on him. This has always been my defense mechanism with relationships, so it shouldn't surprise me that this is what I  do when God and I are at an impasse.

When I start to listen to my dark instincts to turn away, I know its  going to be a tough ride. I'm stubborn. And I have an incredible ability to compartmentalize and turn off my emotions.

And sometimes, not feeling, being numb...is so much easier than coming to terms with reality.

This means turning off my emotions, turning away from positive friends and family, and most of all, turning off ALL communication with God.

And here is where choice comes in.

I do NOT have a choice in whether or not I will get better or get sicker. Is that fair? Nope. Is it sad that I am a 26 year old with more hospital stays and surgeries than I can count? Yep. Its sad.

BUT

Here is what I have learned (and still learning every day): I can choose to be numb and turn away from everyone I love and the God that loves every part of me because I am ticked off. Because "Its not fair". But I am a big girl now. I can't feel sorry for myself anymore like others feel sorry for me.

I have learned people can't choose circumstances, but we choose how to react, we choose how to view it, we choose how to portray it, and we choose how to go on and live life.

Do I believe if I pray and think about sunny beaches that I will become a miraculously healthy 26 year old? Not really. (gasp). Don't read that wrong. I believe my God is capable of healing and doing whatever he pleases. He is powerful and compassionate at the same time. He commands authority but yet knows my heart and holds me close. He is so much more than chronic illness and heartache. Yet, I am not healed. Here I am, still holding the burdens of heartache and illness.

BUT

I believe that God gives me the capacity to continue to have empathy for others despite my natural nature to be bitter and cold. He has given me a heart for people and purposes that I never knew I was capable of. I am capable of love and grace. THAT is God, my friends.

That is the miracle here. That is the story here. I am still physically here on this Earth but more than that, my compassion is still here. My heart is still intact and capable of being empathetic towards others and feeling desires to help and serve others.

It is a miracle I am not a hateful, angry, and numb girl ignoring everyone in the world and also turning away from my God that never gives up on me.

I pray I never give up on love. It really is the miracle story. That is what chronic illness has taught me.

Chronic illness has taught me that God changes hearts. Circumstances are circumstances. I have chronic illness and it is my biggest challenge. But here I am, loving and persevering.

That is the miracle.

I was just REAL with you peeps. I do have dark but most of all, I still have light.

living abundantly,
Dana

Yep.

See yesterday's post. 

Yep. 

Happy to report, today is a good day. 

living abundantly,

Dana

patience. yeah, I said it. AND I prayed for it.

So. I have always been told to never pray for patience. 

"Well you know, Dana, if you pray for patience,  God will SURELY teach you a lesson in waiting and waiting and waiting and waiting and waiting......"  You get the idea.

Hm.

Waiting for what I wonder? 

I'm alive now aren't I? I have Christ on my side so whom shall I fear? Right? I think I have heard that somewhere. ;) 

Well, there really is nothing to fear. Death has lost it's sting, freedom in Christ is mine, and Gosh darnit, I AM ALIVE. 

That is SO enough for me. I could not have said that a few months ago. And some days, its not. I try (note TRY) to choose joy and contentment. 

CHOOSE joy. It is not bestowed upon me. Each day is new and a new opportunity to choose to be happy with who I am, where I am, and the countless blessings in my life. 

That is not to say I don't get nervous about the future. That doesn't mean that I want to be a nun and live in a convent (not that there is anything wrong with being a nun). I simply mean that I am at peace. I am not waiting on any person, any special job, wealth, or even perfect health. 

If I am constantly in a waiting pattern and looking towards the next step, the next phase....then how can I truly take in the beauty of contentment of the NOW. The present. It is not perfect but it is.....mine. 

I refuse to put all of my stock in material things, humans (male and female) who inevitably disappoint (because they are HUMAN), dream jobs, and dreams of family and a white picket fence. 

I put my stock in Christ. I am complete in Him and really...all things after that are beautiful added bonuses and gifts from Him. 

I really have never felt so focused and......at peace and content.

So, BOOM, BAM my peeps. I prayed for patience and now I feel content. Chicka Chicka Yeeeeeayaaaah. 

And I am totally cool with patience. We are down. We are BUDS. Best buds. That is, until somebody gets in front of my car driving 20 miles under the speed limit. Not my brightest moments. But I mean, SERIOUSLY. Drive at least the minimum speed limit. 

What was I saying? Oh, yes. Patience and peace. Got it. I am Cooooool as a cucumber. HA. 

Thats it, folks. 

And of course some pictures to share from the last little bit. Will get to more later. 

I will post an update about my health and some of the progressions I have made and still some things were working on with the team of doctors to manage. 

Later, my abundant living peeps,

Dana

an ode to technology.

An ode to technology... 

Technology has saved my heart during these past few months. 

One of the hardest parts about being in the hospital or being homebound during recovery, is the feeling of loneliness. The feeling that you are stuck on pause and the rest of the world is going on without you. The feeling that all the people you love and care about have somehow forgotten about you. Whether that is a rational thought or not, it still hurts. It makes the healing process even more difficult than it already is. 

These past couple of hospital stays I have started really using Skype or Facetime to talk to family and friends. I just can't even really put into words how much this has helped me this go around.

You see, when you are talking to someone and seeing their face, facial expressions, and surroundings...it makes you feel like you have spent time with them. It warms my heart and helps to patch up the holes in my heart that inevitably appear when I spend countless days in hospitals. 

I have had lighthearted conversations, silly conversations, serious life talks, and emotional conversations where we virtually cry together and hug. 

Like this one time, Casey facetimed me so we could watch funny youtube videos together...

And other laughs and giggles...

And other countless times I got to hear my precious nieces' voices...

Or see my other precious friends and their precious children that mean the world to me...

So thank you technology. For such a cold word - you have allowed my dearest loved ones to warm my heart and keep me sane. 

Thats all for now. More of an update to come soon! 

living abundantly,

dana

a little update for all my peeps.

Hello, hello bloggy readers!

 I am so excited to get back to blogging. So excited, in fact, I don't even know where to start with my long overdue life/chronic illness update. 

Let's start with a little health update. I know that most of my family and friends that live out of town read this blog to see how I am doing, what to pray for, etc. That is the primary purpose of this blog; making people I love feel a little closer when we can't be together. 

Welp. I wish I had some better news about my health to share. The past few months have been rough. And thats putting it pretty mildly. I have had a couple of surgeries and a few hospital stays. Sigh. 

All of these surgeries and issues I have been having are further complications from my original pancreatectomy and islet cell transplant surgery I had in April 2011. We knew going into this surgery that there were many "possible" complications but its definitely different living out the fine print. It is a daily struggle for me not to give way to my natural tendency to be very bitter and angry. And some days, I lose that battle.

 I want to be this positive role model and handle this "situation" with grace but sometimes thats just hard to do. Because this "situation" I am in, these cards I have been dealt, SUCK stink. Its not fair that I am in my twenties and I have a portacath, feeding tubes (JG tubes), and now an insulin pump. Its not fair that I was just in the hospital for 5 weeks and now I am homebound while recovering from yet ANOTHER setback. Its not fair that I work so hard in school and I yet again have to play catch up and always feel behind because of my necessary absences. Its not fair that I can't be alone because of the "brittle" nature of my diabetes. Its. NOT. fair. 

Some days I straight up feel like throwing a tantrum. A full-blown toddler tantrum. 

And some days, I do. In the privacy of my own home, but still. Its a tantrum. God is always so patient and kind with me during these tantrum moments. He never tires of my daily struggles and never gets overwhelmed with my sin. 

So thats where I am at with that. I am currently at home recovering from a 5 week stay in 2 different hospitals. It has been so hard. I am not even going to try and sugar coat it or make it seem like "yay, I am so grateful for being sick!" No. I am not grateful for being sick. I am grateful for the perspective God gives me during these times and the growth that I inevitably experience during these hard times....but it doesn't make it easy. 

So thats a general summary of my health status as of late. I will go into more detail as I go forward with the blog. On another note...are you ready for this? I have some exciting news....

I AM GRADUATING FROM GRADUATE SCHOOL IN 1 MONTH!!!

It's happening! It's here! I did it! I did it! (almost) 

That has been my light at the end of the tunnel. I am excited to be moving into  a different chapter. A chapter that does not include any academics. I am over this whole education thing. ;) Education is sooo 2012.

Oh and last but certainly no where near the least, my second niece was born in August of 2012. She is so precious and sweet. For the purposes of the blog, her name is little Em. Little Em has the sweetest demeanor and really is such a good baby. I adore her. Some say laughter is the best medicine but I say babies and laughter are a tie for the best medicine.   

And of course pictures....

(above) the day little em was born

 Oh and we can't forget little Em's big sister...Miss H! 

She is as loving and free-spirited as always and she is so fun to be around. 2.5 is such a fun age. She brightens my world and always knows how to make me smile. 

Okay well, thats all for now folks. More pictures, updates, and much more to come! Yay blog! Yay bloggy friends! Yay. 

living abundantly,

Dana :)