I’ve been itching to write a post for “Invisible Illness Week!” Finally feeling up to the task after some rough days with Lupus! Now, first let me explain just what “Invisible Illness Week” is all about!
National Invisible Chronic Awareness Week was created by Lisa Copen in 2002. She chose THIS year, 2010, for her “Each One Can Reach One” campaign which demonstrates how one person can help another, its completely anonymous unless the “do-er” chooses not to be. The beauty of it is that complete strangers are making a difference in the lives of those living with chronic pain!
Of course I have to do my part and blogging for Invisible Illness is just one of them! I want to share some things about my own invisible illness that many of you may not have known. Knowledge is power lovies, and thats just one reason why we should all help to spread it!
Each ONE can reach ONE!
30 Things About My Invisible Illness You May Not Know
1. The illness I live with is: Systemic Lupus Erythematosis (SLE)
Lupus is a chronic autoimmune disease that can affect just about any part of the human body. The immune system becomes overactive and can no longer tell the difference between viruses/germs and healthy tissues; this produces auto-antibodies that attack the bodies healthy tissues and cause inflammation, pain, and damage in various parts of the body. There are about 5 million people in the world affected by Lupus.
2. I was diagnosed with it in the year: January 2010
In between grieving the loss of my grandmother and trying to stay warm despite the snowy storms in New York City I had my very first lupus flare. One morning I woke up with indescribable pain, unable to raise my head off the bed or even move a finger without breaking a sweat and unstoppable tears. I had to wait a bit over a month to get diagnosed because I did not have any health care coverage. It was a rough road, but I am glad to finally have health care!
3. But I had symptoms since: 2003
Since age 18, I’ve had pain in my knees, fingers, and back. Over the years it seems it became more intense and spread to other joints in my body like my hips, toes, ankles, etc. I remember telling my doctor right before I became uninsured that I thought I had arthritis…he just laughed at me and said teenagers don’t get that. Little does he know he could have discovered I had lupus earlier. Looking back over the years I noticed a lot of symptoms that were tell-tale signs that I had lupus, but I had no knowledge of any of it at age 18! It’s important to KNOW the symptoms of an illness so we can be able to know when something is wrong in our bodies.
4. The biggest adjustment I’ve had to make is: My new limitations.
One of the hardest things for me has been to recognize and respect my limitations with lupus. Sunlight is hazardous to lupus patients; this means no tanning and we must wear protective clothing as well as sunscreen daily! I used to love taking walks, these days after walking 4 city blocks i’m exhausted! I have learned that when I go beyond my limitations I pay the price the next day! It’s very important to learn our limits and respect them.
5. Most people assume: I exaggerate.
“What do you mean you have excruciating pain? You look fine to me!”, “Don’t blame lupus for not remembering that, you just have bad memory!” If anything, I would say I understate everything I go through. YES, forgetting something is lupus related, its called Lupus Brain Fog. I know the symptoms of lupus, I experience them DAILY, and have been for many years. I finally have an explanation for all the things that have been going wrong with my body these past few years and I refuse to allow anyone to think “I exaggerate” any of them! It is often difficult to explain our illnesses to others. I have found an article called “The Spoon Theory” that breaks it down beautifully for all to understand. It’s written by a very good friend of mine who is also a lupus patient. I have shared this article with many friends & family in effort to explain how life is with an invisible illness, feel free to do the same!
6. The hardest part about mornings are: Getting out of bed…& not crawling back in!
Once I wake up and finally muster the strength to climb out of bed, one of the hardest parts is resisting the urge to crawl back under the covers! It’s best to keep moving once we’ve risen, and focus on eating a healthy breakfast to get a great start to our day!
7. My favorite medical TV show is: House & Grey’s Anatomy
Let’s face it! House is just about the ONLY show on television that is known for talking about Lupus. Even if the popular phrase is, “It’s Never Lupus!” it STILL brings awareness to the illness. That’s just one reason why I love it, another is because I can never stop laughing at how rude House is. I love it!
Grey’s anatomy is a favorite because of the edge of your seat dramatics. I swear it’s like the best medical soap opera I’ve ever seen! I just can’t get enough, also it’s brilliant for teaching me how to spot those annoying inadequate “interns” that some hospitals try to pass off as doctors, *giggles*! Can’t tell you how many times I’ve spotted an “O’Malley” trying to get me to take an experimental drug! Ha!
8. A gadget I couldn’t live without is: My Blackberry!
I had a bad case of ‘Lupus Brain Fog’ one month and forgot to pay my monthly mobile bill on time. Can you believe my frustration when I reached for my phone to update my twitter that morning!? My blackberry enables me to make calls, surf the web, update my Twitter AND Facebook, as well as receive and send emails! It reminds me to take my medicine which I am constantly forgetting to do these days! It’s like the super gadget! I absolutely cannot leave home without it!
9. The hardest part about nights are: Falling asleep.
Whenever its “bedtime”; I always have trouble putting my mind to rest. It seems like my mind wants to race on and on about what I did during the day, what i’m going to do tomorrow?, why are my toes tingling? Are my knees swelling or am I just imagining it? The list goes on and on! So I have discovered that when I have the energy taking a nice hot Epsom salt bath puts me at ease. As well as rubbing vicks vapor rub on my joints right before bedtime. Hope this helps for those who have a bit of trouble getting to sleep!
10. Each day I take: 9 pills & vitamins.
Except Mondays which is 12 pills total! I find that eating a banana, yogurt, and a full glass of water right before taking my medicine makes it easier on my stomach.
11. Regarding alternative treatments I: Have been researching the connection between Diet & Lupus.
I’ve changed my diet dramatically since being diagnosed with lupus. I’v learned which food cause more pain, and which foods are naturally anti-inflammatory! There is so much information to be found if we just take the time to research it. You can find some great tips about which foods assist which part of your body HERE!
12. If I had to choose between an invisible illness or visible I would choose: Neither!
13. Regarding working and career: I miss it…
Unfortunately I haven’t been in the best of health, and as a result my rheumatologist suggests me to focus on stabilizing myself before pursuing work again. It’s a tough road for an unemployed lupie but with the support of my friends and family I cannot complain! Health first, and everything else after.
14. People would be surprised to know: How much Lupus affects someone.
Lupus is an illness that effects just about EVERY part of the body. Learn about the vast range of its effects HERE. Ranging from anemia to ones extremely severe like a heart attack. Knowing the symptoms are very important! It’s one way to tell when a lupus flare may be approaching so you can alert your doctor in a timely fashion and know when something is wrong or lupus related.
15. The hardest thing to accept about my new reality has been: My limitations.
I cannot tell you how many times I have had to explain to a sibling that I cannot take them to the the park, or tell a friend that I can’t make it to a birthday party. Not to mention that when I didn’t listen to my body, and decided to attend an event…I absolutely paid for it physically the next day. Always finding myself in ridiculous pain unable to move without wanting to cry. It’s important for us to learn our limits and respect them, because what we do today, pays tomorrow!
16. Something I never thought I could do with my illness that I did was: Organize a Walk Team.
I found that The Lupus Foundation of America sponsors a National walk called “Walk for Lupus Now” all across the country to raise funds and awareness for Lupus research! After a month of being unable to move; stuck in bed like an invalid and several more months of recuperating I vowed that I would take my first steps for this great cause. That I would dedicate my steps that day to all lupus patients across the globe that were unable to walk. Whether they be confined in bed, wheelchair, cane, whatever the cause I would walk for THEM, because I remember how it felt to be unable to move and wishing there was someone there to support me. I did it for them.
My Lupus walk team is named “Friends Against Lupus” and you can view photos of all the awesome support that came together to walk for Lupus patients worldwide HERE.
17. The commercials about my illness: Are made by the Ad Council.
They are pretty recent and somewhat vague, but I’m excited that there is finally awareness being spread on television.
18. Something I really miss doing since I was diagnosed is: Being Carefree!
I miss having the freedom to lay out on the beach tanning, taking walks in the park, going to parties with my friends, staying out all night on the town….I sometimes feel like I miss out on making memories with some of the most important people in my life. I know I must put my health first, but it still makes my heart ache when I think of the things that I miss most.
19. It was really hard to have to give up: Tanning!
I LOVE the beach! It was something I looked forward to each year and since being diagnosed I have had to stop. My rheumatologist explained the dangers of the Sun’s UV rays and how it can trigger a lupus flare! Since then I have been wearing high SPF sunscreen and protective clothings….although the temptation to just throw caution to the wind and bake in the sun does rise every now and then *giggles*!
20. A new hobby I have taken will take up since my diagnosis is: Oil Painting!
I haven’t started just yet, but i’m excited to try my hand at oil painting! Maybe I’ve been watching too much Bob Ross as a child on PBS, but he is so inspiring! He has convinced me that I can do it and so I shall!
21. If I could have one day of feeling normal again I would: Stay up the entire 24 hours..
…and do all the things I can’t do now. I would indulge in chocolate cake with extra frosting, tan on the beach, take a long walk in the park, go out for yummy cocktails with my friends, and party the night away with my closest friends! Le sigh!!!!
22. My illness has taught me: That I am STRONGER still.
That despite my limitations; lupus will NOT hold me down!
23. Want to know a secret? One thing people say that gets under my skin is: “But you don’t LOOK sick!”
It drives me insane! Since when does a person’s appearance have anything to do with how they physically feel on the inside? My response to all who utter that phrase is almost always, “Well, you don’t LOOK stupid, but…”! Ha!
24. But I love it when people: Spread Awareness/and or educate themselves about Lupus.
I always get a warm tingly feeling that radiates happiness whenever I see someone taking the initiative to educate themselves about lupus. The face that they took the time out of their day to learn about something that may or may not be affecting someone they know is remarkable to me! It never fails to make my heart tug or provoke tears! The same thing happens when I see someone telling others about lupus. The way I see it; knowledge is power and it truly is up to us to help spread it!
25. My favorite motto, scripture, quote that gets me through tough times is:
Psalms 23: The Lord is my Shepherd; I shall not want… He restoreth my soul… Surely goodness and mercy shall follow me all the days of my life: and I will dwell in the house of the Lord for ever.
26. When someone is diagnosed I like to tell them: You’re NOT alone, Never Give In!
There are so many ways to find awesome lupus support groups. One of my favorite places is Twitter! I have a huge lupus family there and we are there for each other through the nausea, the tummy pains, the rainy aches, medicine woes, and rheumatologist visits! You can find me on twitter HERE, send me a tweet and I’ll be sure to introduce you to the lupus family we have online!
27. Something that has surprised me about living with an illness is: New discoveries.
I have met so many wonderful people that I otherwise would have never gotten the opportunity to meet! There are people in my life now that I hope will never leave. We have banded together through an illness and have discovered our strength, and learned so many things that help us manage our illness.
28. The nicest thing someone did for me when I wasn’t feeling well was: Bring me food when I was too ill.
There are times when my body is too stiff, or rigid with pain that I don’t even think about making a meal. I usually just stick it out until the pain passes, but there have been many times that some of my closest friends have taken the time to pick up food for me and carry it no matter how far the trip was to my door! I shed tears just thinking about it sometimes. I am learning to accept help when I am unable to do something for myself, and the fact that they are willing to support me works wonders. I’ll be lucky if my heart doesn’t explode with all their fussing over me!
29. I’m involved with Invisible Illness Week because: I want to let others know they aren’t alone!
30. The fact that you read this list makes me feel: Happy 🙂
Because there are about 5 million people suffering with lupus across the world, and this illness is still unknown to many people! You are now one person who has knowledge that most of the world has no idea about! What will you do with it I wonder? I hope that you will pass it on, because that is the while idea of spreading awareness isn’t it?!
This article is intended to convey general educational information and should not be relied upon as a substitute for professional healthcare advice.