In honor of Invisible Illness Awareness Week, I decided to do my part and participate in this survey to share a few things about living with a chronic illness. Of course, I feel like I've told you so much already so what more could there possibly be to discuss? Apparently, I've neglected to cover some THIRTY different things! So, I hope you're comfortable, this might be a long read.
In completing this exercise, I've endeavored to K.I.S.S (Keep It Short, Stupid) all the while shedding some light on what living with chronic illnesses has meant for me. You may be surprised by a few things that you learn here but fear not, I'm still the same Loopy Lanya you've come to know and, in some cases, love!
1. The illness I live with is:
Lupus, Fibromyalgia, Osteoarthritis, Costochondritis and Migraines
2. I was diagnosed with it in the year:
I have been treated for Lupus and it's sisters since 2007.
3. But I had symptoms since:
I was 10 years old. Mom took me to a dermatologist because my hair was falling out along the edges. The doctor didn't have an answer as to why this was happening but suggested that my ponytails not be made too tight and we went home. I didn't think anything of it at the time and mom certainly didn't let on that she was concerned it was Lupus.
A few years later in my mid-teens, I was diagnosed with Costochondritis, inflammation of the Sternum (the bone in the middle of your chest), after complaining of chest pains after physical exertion. I was given a strong Aspirin-type drug to reduce the inflammation and I went on with my life.
In my late teens to early twenties, I experienced increasing joint pain and skin tenderness at certain points on my body.
By my mid-twenties, I was living on Ibuprofen and Aleve but still had an active life until late 2006/early 2007 when my world came crashing down. Melodramatic, much?
4. The biggest adjustment I’ve had to make is:
Realizing and respecting what my limitations have become! To this day, I will wake up in the morning and if I have very little to no pain, I start to make plans for the day and these plans include everything just shy of trying to conquer the world! Then I roll out of bed and reality usually sets in. My bones pop and crack with every movement and seem to say, "And just where did you think you were going today?"
5. Most people assume:
That I am nice. Unfortunately, my wide mouth stretches into a smile that rivals the Cheshire Cats, from Alice in Wonderland, and people take this as a sure sign that I am a nice person. I keep telling people that just because my large mouth opens wide enough to show the buckles and grooves in my full grown wisdom teeth (top AND bottom), doesn't mean that I'm nice. I'm polite. There's a difference! I've been taught how to act in public and appear civilised. I actually prefer to communicate in grunts and half sentences, not bathe and fascinate myself with just how smelly I can become in a relatively short period of time. Of course, not liking to bathe on a regular basis, doesn't make me less of a nice person, (depending on who you ask) but you'd be surprised at the things I want to say to peoples faces and don't! *Cheshire Grin*
6. The hardest part about mornings are:
Finding out that the detailed plans I made the night before will not come to fruition because I've awoken to a body screaming in pain.
7. My favorite medical TV show is:
I like watching House but only for the medical jargon and I wouldn't call it my favorite. The problem with House, is that I can't stand anyone (except Wilson) on the show! I do love it when one of my meds is mentioned. It's like I just got a huge shout-out and a confirmation that the pills I take aren't supposed to be candy, although sometimes they can seem to be about as effective.
8. A gadget I couldn’t live without is:
My cell phone *I mumble under my breathe*
I'm embarrassed to say that it is attached to me like a baby spider monkey to its mothers teat! My phone has become my connection to the outside world and brings me such joy even on my darkest days! From my phone, I get the news, wonderful social interaction, and healing laughs from people I know and those I've never even met.
9. The hardest part about nights are:
Figuring out how 11PM came so fast when it seemed as if 10AM was only a couple of hours ago! Then realizing that the day has passed me by and I have nothing productive to show for it.
10. Each day I take __ pills & vitamins. (No comments, please)
I don't know why it says 'No comments'. You can comment on the amount of pills I take all you want! I'm not ashamed to tell you that I take 14 different medications a day; 9 of them are prescription meds and the other 5 are vitamins and OTC pain killers. Mom takes something like 21 different medications so I win, right?
11. Regarding alternative treatments I:
Used to scoff at them and, to a certain extent, I still do but I've come to be more accepting of the different methods people use to feel better. I say, if it works for you, go for it! I will even listen politely and not zone out when you insist on the effectiveness of Baby Oil in the relief of sciatica nerve pain! I used to zone out a lot when I found myself in conversations like that. However, I am a changed woman! Now, I politely listen. You never know, Baby Oil could have some hidden properties modern medicine never knew existed!
12. If I had to choose between an invisible illness or visible I would choose:
Okay...I don't understand this one. Who would choose one OR the other? I'd of course choose NEITHER but if someone held a gun to my head and asked me to choose...I still wouldn't be able to choose! I mean, what kind of a question is that!? For the sake of an argument, I'll say that I would choose to have an invisible illness because I'm vain! If I looked anywhere near on the outside what I feel like on the inside, I'd become a hermit in a heartbeat! Then again, I've gained a crazy amount of weight and resemble a slightly smaller version of the Goodyear Blimp and I still show my mug in public every chance I get! So, I don't know what to tell you.
13. Regarding working and career:
I don't have a career and never wanted one. All I ever wanted was satisfying work that paid enough to cover my basic necessities and...my phone. :)
14. People would be surprised to know:
"You have more jobs than a Jamaican!" my sister loves to tease me. (No offense intended!) I no longer work a regular 9-5 but that hasn't stopped the accumulation of little jobs I have accumulated all over the place. At one point, I had FIVE and even had to turn a couple of people down who wanted to offer me employment. Don't worry, everything is above table and one of my jobs is on a barter system. At current count, I have three. I'm not rolling in the dough but I'm happy to be useful in my own limited capacity!
15. The hardest thing to accept about my new reality has been:
That nothing is as easy as it was before! I mean life isn't easy, right? But I'm talking about the days when just showering wasn't a feat of Olympic proportions!
16. Something I never thought I could do with my illness that I did was:
Lose 12lbs by changing my diet and increasing my activity by going for walks! Check out my "Midnight Walk" series of posts!
17. The commercials about my illness:
I've never seen a commercial for Lupus and commercials for Fibro lead you to believe that Lyrica is a wonder drug.
18. Something I really miss doing since I was diagnosed is:
Singing for hours and hours on end! Now, my voice tires from simply talking for more than 30 minutes!
19. It was really hard to have to give up:
Being able to do what I wanted to do when I wanted to do it.
20. A new hobby I have taken up since my diagnosis is:
Facebooking, Tweeting, Blogging and loads of TV watching
21. If I could have one day of feeling normal again I would:
Start the day by going out in my ministry, complete every chore on my to-do list, hang out with friends and then sing in the privacy of my bedroom at the top of my lungs until I was hoarse! I might need more than 1 day!
22. My illness has taught me:
That life is precious! It can change in a heartbeat and you can find yourself somewhere you never imagined you'd ever be! So before you look at someone in a wheelchair and think: "That'll never be me!" Think again! It very well could be you and it could be as a result of your very own body, turning on you, that puts you there!
23. Want to know a secret? One thing people say that gets under my skin is:
"I know exactly how you feel." That line drives me CRAZY! I don't care if we both have mothers who died on the Titanic riding in Steerage Class! You do NOT know exactly how I feel! You are you, and I am me! What I feel and what you feel are two COMPLETELY different things and there are so many factors that come into play that make that possible. I can guarantee you that I loved my mother who died on the Titanic in Steerage Class WAY differently than you loved your mother who died on the Titanic in Steerage Class! So don't even begin to tell me that you know exactly how I feel because I'd never presume to tell you such a thing!
24. But I love it when people:
Ask questions! Asking questions about my illness or my lupie/loopy life are very much appreciated even if I give you short, one word answers in response. It's the asking that lets me know that you are interested in me and not just the person I put on for the world to see!
25. My favorite motto, scripture, quote that gets me through tough times is:
The Bible's promise of a "new heavens and a new earth...in which righteousness is to dwell" (2Peter 3:13) and the absence of pain from disease and all other forms of suffering!
Revelations 21:4 - "And he will wipe out every tear from their eyes, and death will be no more, neither will mourning nor outcry nor pain be anymore. The former things have passed away."
26. When someone is diagnosed I’d like to tell them:
You're not alone!
Find a support system in the people around you and online. You will learn a lot from the experience of others. People you thought were fixtures in your life will disappear, but be of good courage, there will be those you never expected who will become like your right hand!
You will have good days and bad days and you will have devastatingly dreadful days. Expect them, and cry when you feel like crying. Pray a lot but not only for yourself. Pray for others you don't even know who suffer through things way worse than you do, and yet they still find it within themselves to pray for you!
Do what you can on the days when you can do them but don't push yourself too hard. You have nothing to prove and everything to lose if you push too hard and make your disease worse!
And finally, laugh! You must find reasons to have a good belly-shaking laugh, even when it hurts, because such wonderful stress relief goes a LONG way in feeling good mentally, emotionally and physically.
27. Something that has surprised me about living with an illness is:
That I am stronger than I thought I was. Husbands, friends and family come and go but there's no stepping out of the skin you're in! You have to love yourself to take care of yourself and give yourself all the good things you need!
28. The nicest thing someone did for me when I wasn’t feeling well was:
The nicest things people have done for me, besides rides to and from the supermarket or to doctors visits or preparing meals, has been to just let me know that they were thinking about me! Send me a text, leave me a voicemail, send me a card via carrier pigeon! I believe it is true of many who are chronically ill that it's the simplest things that can bring the greatest joy!
29. I’m involved with Invisible Illness Week because:
It's important to acknowledge that Invisible Illnesses exist and that just because someone doesn't look sick doesn't mean they aren't! "Look harder..." says the old baboon to Simba in The Lion King. If we looked harder at the people in our lives, we'd see the bags under their eyes poorly covered with concealer, the slight hunch in the shoulders of someone bearing a great weight, and the smile that covers over a multitude of sadnesses. And in some small way, we would comfort them maybe with a hug or a meaningful touch that says, "I see you!" and "I love you!"
30. The fact that you read this list makes me feel:
That you want to see me and all the others who feel invisible because their illnesses have relegated them for the most part to their couches and to their beds. By reading this, you tell me that you "see" me and that makes me feel loved even more than I already am! Thank you for your love!
Here's some for you:
*Blowing you a kiss*
Today is a Gift ~ Live Thankfully
