the abundant life: December 2013

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.