What does “Kronic” even mean?
After discovering that “Chronic” had already been taken by someone wishing to espouse atheism to the world via the Web (which, as a Christian, I find amusing in a Cosmic, ironic sense), I settled on misspelling the word (which is ironic in the most literal sense) to title my blog about what it feels like to deal with chronic illness. I get all O.C.D. when it comes to my spelling, to the point where I can sometimes lie awake in bed obsessing over something I’ve spelled wrong in an email (or used in a grammatically incorrect way)… but this is a story for another day.
Unable to find any of the blog names that originally interested me, I am apparently using a word that, according to UrbanDictionary.com, means: “A legal weed smoking alternative to Marijuana that originated from New Zealand and can now be purchased worldwide. It can also be used in cooking to make Space Cakes. I kicked back in my easy chair, chucked on some phat beats and started puffin’ the Kronic.”
Perfect :-/
No, boys and girls, this is not my intent at all. You can ask any of my kids (ages 10 to 27): I have never made ‘Space Cakes’ or ‘chucked’ on any kind of beat for a long, long time – but I DID stop puffin’ 4+ years ago… cigarettes. And that’s when I got phat :-/
In this context, the word ‘CHRONIC’ is followed by ‘ILLNESS’ and in my context, it is a way of life. I want this website to be a place where I can feel comfortable saying anything I want (the good, bad, ugly, embarrassing and funny) about the various chronic and/or autoimmune diseases I have without feeling guilty or like a burden or like a second-class citizen. I won’t have to feel like I’m boring anyone, like I’m talking too much and I don’t have to worry if you’re rolling your eyes… because I can’t see you :-) It is a place where I can laugh at myself and hopefully with others who know what I’m talking about, who “get it”… who know the difference between chronically ill and hypochondria. Others who know we really, really don’t want to be sick, but the doctors just can’t help us get better because what we have is…. chronic.
While “Misery might Love Company”, I think it is empathy that will help us ALL feel a little bit better. So yes, I’ll be here chatting and telling stories whenever I feel healthy enough to do so, but my hope is that this site becomes more of a community where I can read many stories from people going through similar situations.
Since this is my first post, I should probably get this out of the way: My name is Debi, I’m 48 and have had Fibromyalgia since 1998; was diagnosed with Crohn’s Disease in 2002 [but have had it longer, (“Ohhhhh…. THAT’S what’s wrong with you”.)]; Hypothyroidism for more than 10 years; Clinical depression for more than 15 (NOT helped by the addition of pain, fatigue and multiple trips to the bathroom :-/), and was just diagnosed with Chronic Migraines last year (POURQUOI ??). I am on a myriad of medications daily (more than a dozen pills), plus the ones I take to manage symptoms “as needed”. Every 8 weeks I go to the hospital for Remicade infusions for my Crohn’s Disease (just thrilling). Tomorrow is my next dose :-( [outdated: trying “Cimzia” now – 2012]
Tell me your story. Try to believe God didn’t forget about you. And don’t forget to find the funny :-)
(Some people think of me as a sage :-/ Well, 2 of my 4 children… on a good day)
THIS KRONIC LIFE 
this made me sad then made me laugh then made me sad again. :( i wish i have your sense of humour. Fair play to yah.
Hey, Nanny – Sometimes I wish *I* had my sense of humor :-) There are days when I won’t or can’t (or some combo) get out of bed and nothing is funny. I know some people say “what doesn’t kill you makes you stronger”, but I don’t feel qualified to comment on that. I just know that a sense of humor is crucial for me to whatever degree I can muster it up on whatever particular day.
And I’ve learned that even a few kind words from a stranger can instantly make my day better, so thank you very much for stopping by and contributing yours :-)
Health and happiness,
Debi
I imagine the depression is not the least of it. Someone I love is dealing with depression and it’s a huge challenge to get thru the week.
Good luck to you. I hope your doctors and you find treatments that work for all the conditions you are dealing with.
Thanks for your thoughtful comment on my blog and for your writing.
Thank you, NinjaNurse, for acknowleging Depression as the disease it really is and not a personality defect so easily fixed if I wasn’t so lazy, or such a “weak-willed woman” or so undisciplined. I have found that being dismissed as the butt of jokes… BY MY FAMILY, (correction, BY MY “CHRISTIAN” FAMILY) has done nothing but feed the portion of my mind that works day and night to convince me it’s my fault. I hope the someone you love is surrounded by more supportive people like you.
Luckily, I have since been distracted by a wonderful dentist who felt bad that he had to bring me the horrifying news that I am about to lose all of my lower teeth, which, after he extracted tooth #21 on Tuesday really only means I will be losing 6 teeth in total now. But those 7 teeth were enough to pull off a smile without anyone knowing I had no molars. (just not enough to chew my food adequately)
And the Surgeon I saw on Wednesday, whom I’ve taken to calling Dr. Dickhead-from-Harvard, believes that Crohn’s disease leaches nutrients from the bones, including teeth, but he couldn’t care less that I was well on my way to having no teeth left. In a cold, soul-less voice, me mentioned that I should use a blender.
For those keeping count: I am losing my mind, [have been] losing my teeth, and next month, I will lose part of my intestine when I am scheduled to have Dr. Satan Incarnate remove it during surgery. Like my teeth, I have been losing my dignity little by little, and whatever miniscule amount I’d had left before visiting that surgeon was trampled to death under the feet of Dr. Dickhead-from-Harvard when he belittled me and my concerns and even rolled his eyes at me… which is, of course, the universal sign for “you’re a stupid ass”.
Why am I here again? And can we please leave my ass out of this? :-/
Surfing the waves of the web I am pleasantly stranded in this beautiful blog.
I write under the pseudonym of Josè Pascal (a descendant of the great Colonel Aureliano Buendía).
I invite you to visit my italian writing blog http://parolesemplici.wordpress.com/mytinbox/. I define this blog “In parole Semplici” as a “virtuacultural tin” box where they are guarded thoughts, memories, images, sounds, and simple stories. ”
If you want to participate and to have more informations send me a letter to inparolesempli@gmail.com
Good life and I hope to soon
Josè
Thank you for your lovely comment, Jose, but I don’t understand Italian and was, therefore, unable to appreciate your blog.
Grazie,
Debi
Dear Deby,
my purpose of my blog is to open at foreign writer of the world so you are welcome ;) don’t be afraid
In the spirit of giving back what is offered… :)
My story is one I am still trying to figure out. I am not ill and thankfully never really have been – yet at 21 I learned that a birth defect makes me unable to ever conceive or bear children of my own… and as I age I find it increasingly hard to come to terms with that.
At first when I found out, I didn’t really mind too much. It was abstract and didn’t really – REALLY – sink in fully. I never before put much stock in that particular ability being a primary factor in establishing my identity, but hitting and passing 30, still single and with that “Now what am I supposed to do with my life?” stuck at the back of my mind whenever I see my friends and old classmates all grown up and settled with spouses and kids… it’s proving a lot more difficult – and painful – than I ever imagined. Almost ostracising sometimes (you’d be amazed at how much of the world is aimed exclusively at families with children and how heartbreaking it can be to be on the outside of that)…
No medical wonders or tricks of modern day science can fix this, and yes, I know – there are other options – but to be honest, I’m still licking my wounds. And I need to sort that out before even contemplating possible solutions – no quick fixes for me, thank you very much ;)
I’m a big believer in “plans”. Not so much my own – though, I do like having and making them when the mood strikes – but in the grander scheme of things, and I think most of my life has worked out somehow or another to be both incredibly rich and unpredictably conducive to great experiences. So, I am not complaining. And I do not feel hard done by. I just haven’t entirely figured out the point of all this, yet. Maybe I never will – but I like to try, and happily entertain the notion that it is possible, plausible even.
Besides, answers tend to come when one isn’t looking, so I am doing my best to enjoy life for what it is and all that it offers me. And if ever I DO manage to figure it all out… I’ll be sure to put it on my blog LOL
Thanks for sharing your life, your words and your thoughts here.
I really look forward to reading!!
– Rayn
I’m glad you stopped by and shared part of your story with me, Rayn. What you said is so personal and so poignant and is very much appreciated.
As a girl in my family, my identity was very much tied to the ability to bear children (and “snag” a husband), so I’ve always wondered what I would have done if my parents would have valued me outside of that role.
At the same time, my first husband died when my sons were young and I’m still trying to tend to the wounds that formed in their lives as a result. For me, being a mother is a constant reminder of how inadequate I am and how much more my children deserve.
But as you say, it’s all about perspective – and we only have our own… UNTIL we take the time to listen and consider someone else’s. I hope your life has been blessed in ways that mine could not because I was busy raising children and, yes, sometimes even looking at people like you as those who had greener grass.
Thank you for your insights,
Debi
Your writing conjures up all sorts of emotions, you make me a laugh and a little sad too. Wish you the best of health alway. :)
love your blog will drop by again.
So glad you stopped by, It’s My Thoughts. Thank you so much for sharing, as I’ve been in a slump, but suddenly feel quite encouraged :-) In one sentence, you made me feel like my writing and blogging is NOT pointless… wow.
I hope it lasts considering I am surrounded mostly by people and situations that serve to discourage me from sharing what’s on my mind.
I stopped by your blog and everything I read had this Scottish accent in my head (or at least, the closest I could get to one!) Your blog seems so positive and optimistic – I will definitely have to return :-)
Glad to meet you!
-Debi
The scottish accent is real debi.. :P One day you might get to hear it too :P
So glad you stopped by and shared your thoughts with me too. I wish you never to be discouraged about your writing as it’s your blog and you should write as you wish to. I enjoy reading your writing so please keep it up. I think if your writing can touch or even relate to one person then it all seems worth it. Especially when something you write does make a difference to someone. I love the idea that someone is looking forward to what I’m about to post or waiting eagerly for a reply to their comments. :)
Wow, Debi, I feel your pain and sense of humor. It has got to be the joy of the Lord that keeps you strong. I don’t know how I would hold up under so much, only by the joy and grace of God. Last year, I got a little taste of what you are going thru when I came down with shingles. In fact, due to a couple of physical setbacks they have provided me this opportunity to start my blog, and of course, it has led me to read so many great blog posts like yours. You can read my story here http://fromundermanyhats.com/2011/06/21/i-suffered-you-dont-have-to/. Being able to laugh and feel grateful in spite of everything, is a blessing. Be well, be encouraged, be blessed.
Hi, Changeversations…
It’s interesting that you say “it must be the joy of the Lord that keeps me strong” – Currently, I can be found berating myself for my inability to find and share the joy of the Lord and have been praying for His strength (that feels sorely lacking).
Thank you for your very kind and encouraging words, and thank you for taking the time to share them with me – along with your story about your own battle with pain. I wish pain on no one, but since I am surrounded by healthy people, sometimes it’s nice to hear from people who get it .
All the best to you,
Debi
Hi Debi,
I looked you up after you “liked” one of my blog posts. Thank you.
I’m sorry you’re dealing with so much chronic illness and depression in your life. Many people have no idea what one goes through. They might comment, “You look good…” or “You can do more than you think you can,” but little do they know of the stormy seas you daily deal with. I have a chronic lung disease called sarcoidosis, an inflammatory disease that also makes me ache all over and often so tired. I empathize also with you with the depression battle. It’s so difficult to look up to Jesus when we feel so, so weary and overwhelmed, isn’t it? I pray that Jesus will wrap His loving arms around you and draw you so close to His heart that you will hear the constant rhythm of His unfailing love for you!
Thanks for looking me up and stopping by, Trudy, I really appreciate your comments and especially your warm, sincere prayer. I read your comment on Renee Swope’s blog and could easily relate to what you were saying, so I clicked on your name and was blessed to find your blog as well. I love the analogy of the river and how you used it to convey God’s truths. The song you included is perfect; I am in awe each time I hear it, knowing the conditions under which the composer wrote it.
I’ve heard of sarcoidosis during my internet searches, when I try to fill in the gaps in medical information missing after brief 15 minute visits to a doctor or specialist. We need to be our own advocates – more today than ever, I think. And only those who are living and constantly trying to adjust to a life with chronic illness can truly empathize with the litany of changes and losses we deal with daily…. regardless of “how good (“not sick”) we look today”! Although, I am thankful and very much appreciate those who are healthy, yet earnestly try to understand.
This is the first time I’ve come back to visit my own blog in over a year. Yes, depression can be overwhelming, permeating every aspect of our lives and bringing the guilt of “if only I was a better Christian, I could fix this” with it. But the self-doubt has become paralyzing, always sneering at me, saying “nobody wants to hear what YOU have to say!” Last Easter, my 10-year-old daughter went from a healthy, happy “tween” to experiencing Severe Diabetic Ketoacidosis, which had her slipping in and out of a coma – first in the ambulance, then in the ‘life flight’ helicopter that rushed her to the ICU at a children’s hospital. Since then, my life (and my husband’s) has been turned upside down, now revolving around her and her diabetic needs 24/7 And it has introduced me to a fear I never really felt about my own illness(es). Sometimes, it feels like “the blind leading the blind”, as they say – and, although I know there is no better place to turn than to our Savior, I also admit that I have a very difficult time trusting him with my little girl’s health… or with my own, whenever I take the time to think about it anymore.
I’d love to hear from you again. Feel free to send me an email, if you feel comfortable doing so: KronicLife@gmail.com
In His love,
Debi