The walls were a pale beige color, kind of a "mother of pearl" shade. No windows; just one door that remained wide open with a billion footsteps shuffling back and forth. This was my umpteenth time in the ER for complications with my autoimmune illness. My nurse was from the Carribbean (like many in this hospital in Flatbush, Brooklyn), and he had a thick Jamacian accent. He comes in to do a vitals check and then asks if I'm chronically sick. I tell him I have Lupus. I usually expect that to be followed with eyes that say "I feel so sorry for you. Shame. So young..." Instead he perks up. "Oh me kno' jus' de ting. See, me cousin sell dis drink a called Noni juice. It a purify ya blood an get ridda alla dat sickness inna' ya blood." I thank him but kind of wave him off. Before I leave the hospital after my overnight stay, this nurse hunts my room down and gives me a complimentary bottle of this liquid Noni cure.
I don't know a person with a chronic illness that hasn't gotten fed up with the constant stream of prescriptions doctors swear by that, due to side effects and blanket treatments, only seem to lead to a sea of pills. And when many of us have gotten fed up, all these "natural cures" on the Internet and in the media seem to be a better option. So we push away the prednisone and start juicing. We do cleanses and special diets. And our doctors freak the freak out.
See, I don't blame medical doctors for pushing prescriptions. Many of them were not required to take a course on nutrition or the healing power of foods. They are so technically and chemically trained that they cannot fathom something helping without knowing how. They need a carbon + oxygen+phospholipid trail to make it make sense. They can't state "I have no clue why, but it works." And because they don't know how it works, many of them don't prescribe it. So we're left to figure it out on our own, for better or worse.
Don't get me wrong, I believe in the power of Eastern Medicine. However, I know that when that fails me, I'm running right back to a Western doctor faster than a veteran nurse can put in an IV. I have done the extreme switch from pills to potions... And gotten even more sick (and broke) than when I started. I believe good health comes from a healthy blend of the two, a balance of preventative and restorative medicine. I take plaquenil to improve my condition and Dandelion root tea to clean my liver. I eat a whole foods diet, and I exercise and take yoga to de-stress, promote circulation, and improve joint function. But, I'm not afraid to get a steroid injection if need be. Any changes I decide to make to my diet or pill regiment, whether my doctor likes it or not, I let her know so that if anything goes really wrong, she knows where the source may lie. And to all of the people with their magical healing concoctions, medical conspiracy theories, and tales of people curing themselves of cancer then walking on water, I tell them to email me sources (not just from the website selling the product swearing Dr So-and-so cosigns this therapy) and say thank you. I don't allow people to make feel guilty for trusting a medical professional over an anointing from a pastor because I believe God gave mankind wisdom to come up with treatments for various illnesses. Yes, I know capitalism and greed very well might be the reason we see more treatments and less cures today. But just as each body, person, lifestyle, illness is special, you have a right to mix your own cocktail of pills and potions to suit your own special pallet.
Many prominent bloggers were asked to participate in this simple blog post to help spread awareness during Invisible Awareness Week (September 11-18th). I'm a lil late, but I still wanted to contribute, especially since many invisible illnesses, like Lupus, don't get the press or attention they deserve.
30 Things About My Invisible Illness You May Not Know
1. The illness I live with is: Systematic Lupus.
2. I was diagnosed with it in the year: I was diagnosed in July 2004, right after my Sophomore year.
3. But I had symptoms since: I remember the serious ones beginning in 2003 (migranes, joint pain, stiffness in the morning, and more). I'd had many of the symptoms for a while but I chalked it up to being a college student, being achy from my dance troupe, even from being a female. But when I lost my hair in June, that's when I couldn't deny something was wrong.
4. The biggest adjustment I’ve had to make is: not being able to rip and run 24/7 the way I used to. I'd feel guilty for not helping everyone, for saying no, or for not supporting every event out there. Now I have to balance more than the average person, relying on naps and rest days to keep myself healthy. I have to listen to my body or risk being achy and flared up the next day (or few days).
5. Most people assume: that I don't have my insecurities about the illness. I worry that I will get worse, that I'll develop more accompanying complications, that I'll have trouble having kids, or that it will effect my quality of life. I stay positive and try not to let the illness take over my life, but I have my fears.
6. The hardest part about mornings are: the initial wake-up process. There are days when I'm perfectly fine, and others when it takes a mental yell to my joints to get them to move. Also, how I wake up can actually determine the kind of morning I'll have. I've been abruptly waken up or had a REALLY high anxiety dream, and woke up so tense that it put me in a flare for the whole morning even achy till the afternoon.
7. My favorite medical TV show is: House. I always get excited when they say "Maybe it's an autoimmune disease? Lupus? Start them on 60mg of Prednisone." I'm like, "Yea, I take that too!!!" lol.
8. A gadget I couldn’t live without is: my cell phone. I handle EVERYTHING with it: phone, scheduling, poem/songwriting, business, etc. I swear, I've forgotten my mom's birthday because it wasn't in my phone calendar.
9. The hardest part about nights are: not always being able to enjoy the nightlife. I wish I could party till the sun comes up, but in most cases, unless I get a serious nap in, I'm super drained for at least a day or two. My body takes so long to recover. I also hate how drained I am at the end of the day...damn near narcoleptic.
10. Each day I take: 10 pills & vitamins. (Trying to get off of prednisone... sigh)
11. Regarding alternative treatments I: believe in a healthy combination of both. I think the idea of totally ignoring western medicine is crazy. If something goes wrong, best believe you aren't going to a herbalist. However, it's also crazy to think that an illness INSIDE of you isn't effected by our diet or an influx of meds in your system. I detox and take supplimental herbs & teas in hopes of finding a balance in my body.
12. If I had to choose between an invisible illness or visible I would choose: I would choose to have an invisible illness. In the beginning I hated telling people I had Lupus because it made some people treat me like I was an invalid. I can only imagine if it was visable. It'd be more likely to control my life. However, it does make it hard to explain to others when you're feeling sick.
13. Regarding working and career: I've become such a structured person. It helps me get work done when I need to. Also, being diagnosed with Lupus made me see how valuable life is and how important it is to do what you love. It helped me choose my career.
14. People would be surprised to know: that I have used Lupus to get myself out of some sticky situations. I don't like to do that because I feel like that puts out bad karma that will come back to bite me later.
15. The hardest thing to accept about my new reality has been: thinking of myself as a person with an illness. Prior to Lupus, I'd never even been to the ER. Except for one minor surgery, I never saw a doctor for more than a check-up and ringworm when I was 12. Now, I see my rheumatologist every month, different specialists every few months, giving everyone damn near a pint of blood each visit. I can't always get everything I want to accomplish done, and I have to think about things that "normal" 20 something year olds don't. Yet, my mind is the same healthy person it believed it was before I even knew what Lupus was.
16. Something I never thought I could do with my illness that I did was: live a normal life. It took a while to realize that there is no such thing as a "normal" life. We are all given our own obstacles and trials to deal with, some more than others, but not without our gifts, blessings, and the ability to find light in dark situations. It's our job to take OUR lives and make it a meaningful, amazing, and love-filled experience.
17. The commercials about my illness: There are no commercials for Lupus, but I was excited to see a few print ads throughout NYC. Lupus is the disease where many have heard of it or know someone with it, but have no clue what it is. Hopefully more awareness can happen in the future.
18. Something I really miss doing since I was diagnosed is: organized dance. It always feels like I'm putting so much strain on my body when I push it to get choreography or do too much jumping. I still take a few classes from time to time.
19. It was really hard to have to give up: not being invincible. Many of us think we can treat our body like a machine, overwork it and play it till it's run down. It's what we're told life is. "We'll sleep when we're dead." For a person with an illness, we can't afford to treat our bodies that way. I miss the freedom of being able to just wild out, but in the same breath, I have learned the true value of optimal health and taking care of the gift God has given me: my body.
20. A new hobby I have taken up since my diagnosis is: I'm a movie girl... Netflix is my way to relax and get lost in the plot of another world.
21. If I could have one day of feeling normal again I would: I would spend an entire day outdoors, in the sun, exercising, eating grapefruit (as much as I love it, some of my medications conflict with it), and dancing.
22. My illness has taught me: Value your health and love life!
23. Want to know a secret? One thing people say that gets under my skin is: "Why are you taking that medication? Oh, I know a cure for Lupus. Just go to this website about this doctor in the East Congo/ France/ India/ etc." I'm so tired of people, who aren't medical doctors, trying to tell me what I'm doing wrong and that they know how to make everything ALL go away. While I do practice elements of Eastern/Alternative medicine, I cannot completely abandon Western medicine. I know you mean well but stop trying to fix me, people!
24. But I love it when people: open up to me. I appreciate the kind words, the understanding, the laughs, the deep discussions. It doesn't just have to be about Lupus. Sometimes just remembering how a like we all are can brighten my day.
25. My favorite motto, scripture, quote that gets me through tough times is: "There is always someone out there who has it worse than you do; count all of your blessings." Puts things in perspective.
26. When someone is diagnosed I’d like to tell them: to learn how to listen to their bodies (it'll let you know when to expect a flare), to make sure they fully take an active role in understanding & managing their disease, never be afraid to go to the doctor, and to always stay positive. The mind is a powerful thing.
27. Something that has surprised me about living with an illness is: that you can actually LIVE with one. So many people think life ends when bad things happen, but there is SO MUCH worth living for. I really value every moment I get and I'm proud of how strong I've been in dealing with this disease. I surprise myself constantly.
28. The nicest thing someone did for me when I wasn’t feeling well was: surprised me with a massage. I thought we were just going to hang out and I ended up at a spa. My joints felt so amazing afterwards.
29. I’m involved with Invisible Illness Week because: so many people ask me questions about this disease. Although I'm a week late, I still want to do my part in spreading awareness that you don't have to look ill to be ill. Also, I want people to know that just because you're ill, doesn't mean you have to live your life as a sickly person.
30. The fact that you read this list makes me feel: optimistic!