Friday, October 18, 2019
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30 Things About My Invisible Illness You May Not Know !

Hello!

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.

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28 comments

  1. I will have to waayyy agree once we push and fight abs stretch once I get going I don’t want to slow up until I crash n then I think it’s bc in two to 3 days it gets harder to get up and we know that. Good point gotl

  2. Thank you for commenting April! It seems a lot of lovies are a tad shy, I wish they shared their thoughts so I can interact with them. IT’s definitely true! Once we’re up its best to stay moving or else we rust up!

  3. This is some really great info….after reading a lot of what I experience now make sense…. I am still learning but I see I have soooooooo much to learn…..thanks for sharing…..just awesome.

  4. Loved this article, very informative. I was diagnosed back in 1997 yet atleast once a month i come across a new symptom. I am trying to remeber to write a flare up journal because the lupus fog definetly messes with me when it comes to remembering which remedies help which symptom and even which symptom can be prevented if i take certain precautions…Now if i could just find a good doctor! lol

  5. I was just wondering what the ratio of men to women/population that have Lupus, I was diagnosed in 06′ with SLE and a wide range of other disorders blamed on Lupus. I’m still learning about this Invisible Disease as you call it, and I want to thank those responsible for the Friends against Lupus page on Facebook, it has been very helpful in educating many of my friends and relatives about Lupus….;o}

    • Hi Greg!

      I absolutely LOVE it when a guy interacts! May you inspire other men to do the same! RAH!
      Now, Before puberty, approximately 1 male will develop lupus for every 3 females. In teens and adults, approximately 1 male will develop lupus for every 10 females.
      After age 50, approximately 1 man will develop lupus for every 8 women. The decrease in the ratio of lupus in older man and women might be related to the fact that older men develop lupus more often than younger men, or because hormones have less of an effect in older women. This info can be found on The Lupus Foundation of America page here: http://www.lupus.org/webmodules/webarticlesnet/templates/new_aboutindividualized.aspx?articleid=109&zoneid=18

      Ohhhh! And it brings me joy that my Friends Against Lupus page has helped you so much! That is exactly what I hoped it would do when I started it *hugs*
      Stay strong lovie!

  6. Tiffany-
    Keep fighting the good fight. I have Lupus and Fibro. Everything You wrote is so TRUE! Stay healthy and well!
    Gentle hugs,
    Shennee

  7. Great List! Great representation for LUPUS & CHRONIC INVISIBLE ILLNESS! I Invite you to repost some of your blogs on Ardent Cerebrations: Musings of Lupus Survivors! http://www.alupussurvivor.ning.com Love your website. Keep up the good work!

  8. Thanks for posting this information. Very informative.

  9. Hi Tiffany!

    I am also participating in the Invisible Chronic Illness Awareness week. I was diagnosis with Lupus in January of 2009. It has almost been two years, but I am stilling struggling with it and learning to cope. I can totally relate with what you are going through. I found myself Checking almost all of the statements that you made because I feel the same way too about the things that you wrote. Feel free to contact me anytime, I notice that sometimes my family is not always the best support because they don’t understand…

    • Hello lovie! I’m so proud of you for participating, its truly important for each of us to take
      part in spreading awareness & shed light on what our lives are like, in hope of enlightening
      others & looking for a cure! My contacts are mentioned on the page!

      Feel free to find me on Facebook: HERE

  10. veterinary technician

    Terrific work! This is the type of information that should be shared around the web. Shame on the search engines for not positioning this post higher!

  11. Hi Tiffany!
    I’ve been following you on Twitter for awhile and I must confess that I’ve been a bit too intimidated to “tweet” with you! However, I’ve really enjoyed reading some of your blog posts today! I’m new to this site and am truly grateful to have found it! I’ve been struggling lately and finally admitted to myself that I need to reach out for support! I have a hard time discussing all of my ailments….especially since I was told that people really don’t want to know how you are really feeling (i.e. when someone asks you, “how are you?” they really just want to hear “I’m fine” Plus being a R.N. I always thought I should be able to heal myself. I’ve had to accept the fact that I may be able to heal someone else but I can’t heal myself on my own. Thanks for raising awareness of lupus! We need folks like you who aren’t ashamed of “telling it like it is” Kudos and blessings to you!

    • Thank you lovie! Oh my! Me? Intimidating, noooooooo! 🙂
      I don’t bite, promise! Lupus Awareness is a must for me, I never want for anyone to discover it as I did in the doctors office!
      On the road to a cure lovie! Stay strong & definitely feel free to tweet me! <3

  12. My son was diagnosed with lupus 3 1/2 weeks ago. He is 19yrs old. Is there a support group for guys? All help is appreciated. A mother about to lose her mind.

    • Hi Sabrena, I don’t believe there is any specific support group targeted by gender. All support groups are for anyone living with lupus. I strongly suggest your son to take part in one because they are vital to every patient! Be strong lovie, he needs you now!

    • I totally forgot! visit http://www.lupus.org for a list of Lupus Foundation of America chapter which can provide you with support groups in your area! Do let me know if you need assistance!

  13. Wow Tiffany, I just love your enthusiasm!! When I read your posts I find comfort in them. I was recently diagnosed with Lupus last month (September 2010), if it wasn’t for me being pregnant I wouldn’t have known I have Lupus.

    The Rheumatologist says I have a mild case of SLE. It took extensive blood work and tons of positive for abnormal tests and a few of the symptoms (about 4) as well to find out what was wrong. I do know about the sore joints and muscles however not to the extent of many of the cases I have read about and yours too. I do understand that no Lupus case is the same. I just can’t help but wonder what will happen. Lupus hasn’t attacked any organs that I know of as of yet….my case seems to be so mild to the cases I read about.

    I’m thankful for individuals like you Tiffany that are out there sharing there life and life symptoms 🙂

    I like that I have been lucky but its not fair to those others that are not. The lupies that end up in the hospital and/or in comas…people that loose their jobs cause they can’t function. I don’t even know what my own flare ups are yet. I do have to agree with the diet thing….I can’t handle alot of carbs, milk, fatty food and tons of sugar. Can I hope they caught mine in time before these crazy things occur? Or would it eventually happen….I hate the not knowing part and of course the Drs cant tell me either just that they will monitor me and told me to check in when ever Im not feeling well… The worst thing is that when people ask “well whats gonna happen to you, or what do you do now…how will you change”…I don’t even have the answers to those questions, but I do understand what could happen…But I do feel grateful for is not being crazy…most of the odd things that has been wrong or gone wrong with me in my life I can actually connect some to lupus. It means I wasn’t crazy and just “clinically fine” there was an underlying cause…and I too didn’t have any health insurance until I became pregnant so my lil guy is a miracle l for me.

    That’s part of my story 🙂

    • Thank you lovie! I feel it is best to approach all things in life with a huge dose of positivity regardless of the circumstances. Negativity gets us nowhere!
      I wouldn’t worry about “whats to come”. No use worrying yourself over something that we have no actual answers for since every case of lupus is unique.

      You are definitely right about diet. I just came back from a seminar given by the S.L.E. Lupus Foundation (I posted the pictures/footage on HERE and Dr. Dibnar mentions lupus patients should follow a low carb/low calorie diet. Limiting our meat consumption and eating more fish, reducing our consuption of dairy products, salt, and sugar. IT’s VERY important especially when one is taking steroids!

      We may not know what’s to come, but we are learning ways to LIVE better and healthier so that we can make the most of our lives despite our illness.
      Thank you for sharing your story lovie! Stay strong & never give in!

  14. Many, many BLESSINGS to YOU, Tiffany!!! Keep up the positive attitude and do your best to not allow others thinking to affect you!! Take excellent care of yourself!! <3

  15. I know this is going to sound horrible but I’m having a real hard time reading the typeface that is in pink. Has anyone else mentioned this, or is it just me? LOL Well to get to it. I’ve had lupus since 1979 and I’m 56 now. The last 30 yrs. have been hard but in retrospect they’ve been a breeze. The last year I’ve noticed that all the biofeedback training and my faith in the Lord has become a lot harder to maintain a happy smile and attitude everyday. I’ve always prided myself on the ability to hide my pain from others and succeed in making them believe I’m having a good day. Lately when I’m feeling my worst I lash out at my family and fortunately they understand. Unfortunately they shouldn’t have to be put in that situation. At the age of 50 we took on the responsebiity of raising our granddaughter. She’s 6 now and has ODD and ADHD and on daily meds. That makes my life very busy and I have to constantly be aware of my mental state and always have a good attitude ie: If I’m miserabale it sets her off too. So I make sure I always have a smile on my face around her. Trust me IT’S NOT EASY!! I don’t have any friends with this illness either, just FLAGC. So of course I’m venting to you guys. The article on SPOONIES has been a tremendous help with my husband of 12 years. He has always tried to understand but hadn’t really gotten it till I read that letter to him one day. Now I use the spoons to explain my day or moment to him and he immediately gets it. I can’t say enough good things about the SPOON concept. She has a fan for life !!! I guess my main complaint or situation that sets me off is when my husband complains about being tired or sore when he gets home from work and all I can think about is how did I even make it through that day. It takes all I have to keep quiet and sympathize with him. But some days that just seems impossible to do. The one thing I refuse to even think about is what the future holds for me with this illness. I pray with my granddaughter everynight and we always add “help MomMom have a good day tomorrow”. My favorite scripture is Matt. 19:26 – We can do all things through God, Who strengthens me. When I’m at my worst is when I find myself spending more time in his word. While I’m doing that it seems I focus less on my pain, even if it’s for only 20 minutes out of a full day, it’s something. You do realize that you’re brain can not focus on two things at once, it’s impossible. That’s where that saying came from, ” if your head hurts, stub your toe” LOL It’s very true, try it. Thank you for letting me vent, and God Bless all you other angels out there dealing with Lupus.

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