Not a day goes by without seeing an E-card created by Someecards. Out of pure curiosity (and for a need for some funny), I searched for “lupus” e-cards and this is what I found:
Giggling, yet? Spread the joy.
Not a day goes by without seeing an E-card created by Someecards. Out of pure curiosity (and for a need for some funny), I searched for “lupus” e-cards and this is what I found:
Giggling, yet? Spread the joy.
Steroid-driven hunger drives me to eat anything in my path. After 3 years of taking daily prednisone (doses ranging up to 80 mg a day), I have the body to show for it. I am a jiggggly woman with a moon-faced shape. Maybe when I go on a hunger-rampage I should consider chomping on a piece of lettuce instead of the fried turkey leg… but I digress…
Today, I could not resist the Kit Kat staring at me. I immediately tackled the candy bar and started to unwrap it, but then I came across a dilemma. I COULD NOT UNWRAP IT! I tried every technique known to man, including the one where you tear along the printed dashed line and the one where you split the wrapper by using both your hands (similar to opening that stubborn bag of chips), AND NOTHING! I could not get into the blasted Kit Kat. I looked at my hands with such disappointment. My poor hands are no longer dependable tools. They ached and were a bit swollen. This wasn’t the first time that joint pain and inflammation has kept me from getting things done. It gets frustrating but we must learn to cope, especially when we are too young to be complaining about “achy” hands. Luckily, I was able to bug a co-worker to open my candy bar to feed my steroid-driven hunger. However, someone is not always around. If I can’t find someone to help me out, I just put whatever I am doing down and walk away. There is no need to get frustrated. I usually make another attempt once my hands feel better. But most of the time, I usually throw the item against the wall. Problem solved.
It is Day 2. So, here’s a short-and-sweet update on my progress to resolving my energy crisis. These horse-pills have joined my morning pill-swallowing routine. I take 2 of these a day (recommended dose):
1. Pills smell FUUUUUNKY. The funk punches me in the face as soon as I open the bottle. I would rather be in a room filled with dirty baby diapers covered in sewage (Yes, the smell is that bad.).
2. These pills taste as funky as they smell and induce my gag reflexes (go ahead and insert your dirty joke here).
3. Energy boost is noticeable. Yesterday was my first work-day with these smelly pills in my sysyem. I arrived to a desk covered in multiple projects that had to be done by that day. While reviewing my task list, I thought it would be easier to run a marathon in heels while torturing myself to the music of One Direction and Taylor Swift. Somehow, I came out as a winner and finished all my tasks– AND still had enough energy to stay out of bed until 10pm to work on my personal projects!! Either I was lucky or these pills actually work. But I’m not drawing any conclusions just yet. It is only Day 2.
Stay tune and stay FABULOUS.
Posted from the Diva on the road
First a little background: September is normally my favorite month solely for the fact that I was born on the 8th. As a true diva, I take pride in my birthday month and usually have celebration plans that last the entire month. This is a very girly thing to do… I know. For September 2012, I spent over half of the month in the hospital- 2 different stays; both for lupus-related events (heart, lungs, and kidneys), overlapping my birthday! I do not want to bore you guys with details, but I came out of September alive and still breathing. Now that I have freedom from the hospital, I have so much to catch up on, including new posts! BUT I CANNOT FOCUS (maybe because of my lupus CNS or simple procrastination). So, I am taking cue from my neurologist who suggests that I should conquer tasks in little chunks. FYI- a very helpful tip when dealing with lupus fog moments.
Now to my point (finally): I came home from the hospital two weeks ago and awaiting on the table was this delicious vision: FLAN!
This flan was homemade from my amazing Tia, who is from Mendoza, Argentina. For as long as I can remember, flan was the first step of the solution to any problem. As I was savoring every bite of my flan, I secretly wished, “Flan is the cure for lupus“.
ARE YOU KITCHEN-FRIENDLY?: I have no clue on how to make this, but I did find an Argentine recipe. I tried asking my tia her recipe but it involved, “a pinch of this”, “a dash of this”, “heat until its the color of ____”. Frankly, my head hurt with the thought of trying to recreate her recipe for this blog.
Why do I even ramble about flan?
First, because it is FU*$#ING AMAZING!! Second, to let you guys know that although we may suffer a lupus-set-back, we can still experience joys in our life. For me, it is as simple as enjoying a homemade flan from my Tia. Seeing the flan on the kitchen table reminded me of how much I am loved and supported by those around me. And lupus cannot take that away from me.
The Supreme Court today declared in a 5-4 vote that the Affordable Care Act (ACA) — the most significant healthcare legislation since the creation of Medicare — is also a constitutional act. —Medscape News
Regardless of your political view, there is no denying that history was made today. The Supreme Court says ‘Yes” to the Affordable Care Act (aka ObamaCare). But many of us lupus patients are wondering: “How does this affect me?”. In the flurry of emails and reports regarding the decision this morning, the Lupus Research Institute (LRI) sent out an email that summarizes this Act and explains how this applies to lupus patients. LRI did such an amazing job that I am going to copy and paste the email here. Of course, you can receive these email notifications by signing up on their website: http://www.lupusresearchinstitute.org/
From the Lupus Research Institute:
The day many people living with lupus and other chronic conditions have lost sleep over has come, and we can all rest easier thanks to the positive ruling on the Affordable Care Act from the U.S. Supreme Court.
The Lupus Research Institute (LRI) strongly supports today’s ruling for the provisions it makes to protect the 1.5 million Americans living with lupus. The Court’s ruling provided for four critical principles that the LRI and its National Coalition of patient organizations had successfully advocated for inclusion in the current Patient Protection and Affordable Care Act. Together, we have been on record and calling on Congress to ensure these principles be maintained throughout subsequent rounds of revisions.
Following is the press release the Lupus Research Institute just issued expressing our appreciation for today’s landmark decision and informing the lupus community nationwide of its implications for their future care:
Lupus Research Institute Applauds Supreme Court Ruling on Healthcare Act
Legislation Maintains Key Critical Principles for People with Lupus and Other Chronic Diseases
NEW YORK, NY – June 28, 2012. The Lupus Research Institute (LRI) is strongly encouraged with today’s bipartisan U.S. Supreme Court ruling upholding virtually the entire Patient Protection and Affordable Care Act signed into law by President Barack Obama in 2010.
This historic decision is greatly welcomed news for the 1.5 million Americans living with lupus. In upholding the Act, the Court supported principles the LRI and its National Coalition of patient organizations had successfully advocated for inclusion to ensure that people with chronic diseases such as lupus are protected. The Supreme Court ruling maintains the following four key principles so critical to people with lupus and other chronic diseases:
“With so much at stake for lupus patients, so many are breathing a sigh of relief with this Supreme Court ruling,” said Margaret Dowd, President and CEO of LRI. “The ability to buy insurance regardless of preexisting conditions is a critically important legal right for all of us – but for people with lupus it’s truly a life and death issue. The current provision eliminating lifetime caps on insurance benefits is another pillar of health care reform that is dramatically increasing treatment options for many lupus patients.”
The Diva’s First Reaction: (with the help form Thinkprogress.org)
1. More than 30 million uninsured Americans will find coverage under the law.
2. Insurers’ inability to discriminate against people with pre-existing conditions!!
In summary: This is a huge day for many patients struggling to maintain health insurance to pay for the treatments that are desperately needed to continue daily activities. Options are now available.
Here are some helpful links regarding lupus-related hair loss:
http://www.mayoclinic.com/health/lupus/AN01876: A quick Q&A overview
Also, here is one of my favorite songs: “I am not my hair” India.Aire. I hope it gives you a smile and some inspiration. I cried when I heard this song for the first time as a bald woman. Now, I hear it and feel like I can do anything.
Do you know any helpful sites regarding lupus-related hair loss? Please feel free to post!
Most frequently the hair loss occurs at the onset of the illness, and may be one of the first symptoms of the disease recognized by the person. Most often, the hair loss is from all over the head, but sometimes the hair falls out in patches. When the disease is brought under control, the hair should grow back. Sometimes there is a rash in the scalp—usually subacute or chronic discoid—that interferes with the hair follicle. In this situation, the individual is left with a permanent area of alopecia. Drugs used to treat lupus, such as prednisone and immunosuppressive therapies, also may be the cause of reversible hair loss.
I use to spend so much $$$ and time/effort on my hair. My hair use to be my identity and my creative outlet. OK- so maybe the masses were not jealous of my hair and maaaaybe they weren’t saying “Geez, that Diva has great hair!” As much as I fought with my hair every morning, I still loved it and ROCKED it. I noticed my first bald spot in May 2010 and didn’t think much of it. “No worries- I can hide this.” Before I knew it, my bald spot spread like wild-fire! I was leaving traces of hair everywhere. Showers were torture as I could see strands going down the drain. I was loosing hair in massive amounts. The strong strands that survived the massacre were those in the front of my head. At the time, I was with my ex, Mr. Aguinaga. We were together for 9 months at the time of my first strand departure. By the time the last strands were hanging on for dear life, Mr. Aguinaga disappeared into the arms of another woman who was healthy (more details to come.. it’s juicy). I knew Mr. Aguinaga was never going to be good enough nor strong enough to be with me- more on that to come.
There came a point when the inevitable had to happen- I had to shave my head. I remember the day my favorite stylist picked up the razor. I cried as soon as the razor hit my scalp (luckily- I had my one of my best friends with me- thank you Mr. Carmona). Through my tears I thought: I will never be the same. I knew that lupus was going to bring out the best in me by pushing me outside of my comfort zone and revealing my strengths.
I have an arsenal of wigs and scarves. Wig shops became a bi-monthly visit. I was not worried about the shopping expense as this was now a medical-expense. I bought hair and submitted receipts to my insurance company and for those not covered will be on my tax return. (Perks of a chronic disease, eh?) Over time I gained knowledge on the world of wigs and became an expert (“Wig knows wig“). I learned new terms (I had a “wig-face”- meaning all the wigs looked great on me), and learned to stay away from all natural elements (water, fire, and air). Each wig had a name and a personality: Streak, Kikki, Lolita, ‘Nita, Bambi (my blonde one). My wigs were my new accessories and together we were fooling everyone. Joke is on you world!
Even with all the fun I was having with the girls, there was one thing that bothered me: THIS ISN’T MY HAIR! It was exhausting just to make sure the damn thing stayed on my head and straight. I would spit my drink out when men would come up to me at a bar and say “I really like your hair”. I almost want to respond with: “Well, if you like it so much, here ya go!” (As I whip it off my head- That would not be too classy of me). In upcoming posts, I will talk about how men react to my hair-situation.
Will I be bald forever?
Thanks to daily pills of prednisone, 15 steroid shots to my scalp once a month, and calming of the lupus symptoms, my hair has started to grow back in- BUT not all at once. Of course, I have some lazy follicles that are taking their time to grow back in and, unfortunately, I do have some scarring which will result in permanent bald spots (i.e., scarring alopecia). As I had mentioned before, I am currently taking a form of chemotherapy, methotrexate, as an injection once a week. Like other chemotherapy, a side-effect is hair loss. I started chemo at the beginning of this year as a last-chance treatment option. When Dr. Lupus explained the side-effects, I laughed when he said, “oh, you may loose your hair.” I responded with “Doc, I have already crossed that bridge!” My experience with methotrexate in regards to hair loss has not been too bad. Actually, I haven’t really noticed- because I am keeping my hair short these days. Every once in awhile, when I rub my hand on my scalp I see little hairs breaking free- but I know they will come back. 😉 For the majority of patients experiencing hair loss, the hair does grow back once you start to feel better. Rarely, does the flare-up cause scarring, which prevents regrowth.
Wanna hear the perks of being bald? Stay tuned for a fantastic list in a future post.
I am not my hair- Going on the “cover-up” strike
A couple of months ago, I went on strike. Part of it was because of the Houston-heat– it was just too hot to be wearing hair. I was already having hot flashes from the steroids and chemotherapy! The main reason was because wearing the hair wasn’t suiting me style. My style is to be true to myself– to be a fabulous diva no matter what. Wearing hair felt like I was ashamed of myself and denying my true fabulousness. Don’t get me wrong- wigs are great and you will see me wearing one from time to time (especially on cool nights out). I am glad that I lost my hair- because I learned a great lesson- I learned that I am not my hair. Physical features do not define who I am. I am me and beautiful bald. I recommend you, my fellow patient, to put down that wig/scarf and let loose by walking proud with your bald head.
This morning I woke up to the very annoying sound of my alarm clock (for the record, I have never encountered a pleasant-sounding alarm clock) and I started my daily morning routine:
This morning was a bit different… I felt a bit more on the crappier side than usual. This feeling was a continuance from the day before. Yesterday was the first time in many weeks that I called in sick to work. I could not get out of bed and I felt like pure shit… AND I was coughing. This morning I had to get out of bed because I had an appointment with my wonderful, tough loving rheumatologist, who has become my primary doctor and faithful leader of my team of doctors (hence forward will be known as Dr. Lupus). I knew I could not give up this appointment- even if I felt like caca-on-the-sole-of-a-shoe. I was so short of breath, my chest was tight, achy joints, and had a nice rash going (the solution to all: 2-parts steroids; 1-part vicodin).
Dr. Lupus was not too happy to see me coughing. While examining me, he asked me the most profound question: “Do you feel like you are sick or like a flare?” WHAT?!? MY DOCTOR IS THE RIDDLER! I looked at him and responded with “umm… like I am sick?” A relief came over him: “Good. I would rather you be sick than having a flare.” He is a caring physician. As per usual, The Riddler approaches my case with several possible explanations. Today’s explanation: 1) I may be experiencing some lung toxicity from the methotrexate (… another side effect?!?!?…) or 2) I am sick with some virus- I caught a bug from someone else (agghhh!). He thinks it is most likely option 2 and there is nothing I can do about it. He gave me a soft, caring smile and said: “Expect to experience some crappy days.” Here are the good news that comes out this: a) I won’t get a fever because of the loads of tyelonol/vicodin I take daily and b) I get to skip the methotrexate tonight! HOORAY! I just freed up my weekend of vomiting, nausea and overall feeling of death caused by this lovely form of chemo. Too bad, I am sick with some bug. So pretty much, I will be feeling the therapeutic benefit of the drug without the side effect. THIS WAS NEVER A POSSIBILITY BEFORE! Side note: How about this concept- a drug that can be prescribed where we can just feel the benefits.
After getting poked (twice) by the phlebotomist who was not happy that it was Friday, I was on my way back to my bed. I woke up from the vicodine-haze and immediately thought “someone is to blame for my crappy feelings“- but who? Who was coughing at the office? Did that cute Barista have the sniffles? More importantly, do I need to carry a can of Lysol everywhere?
I can imagine the typical scenario:
The culprit: *Cough* *Cough*
The Diva lifts her head in fear and looks around (imagine the scene from Jurassic Park- where the water in the glass starts to move with every stomp)
The culprit: *Cough* *Cough* *Achoo* *Sniffle*
The Diva finds the source of destruction and slowly takes out the can of Lysol from her over-sized purse. She shakes the can as she slowly approaches the culprit.
Diva: Excuse me.
Culprit: Wow! Let me just say that you are gorgeous. I can tell you are fabulous
Diva: Stand still, you bastard! How dare you cough around me!
Diva sprays the culprit from head to toe. Once the can becomes empty, she turns, drops the can on the floor, and walks away leaving the culprit dead to any germs.
THE LUPUS BLOG
This is my coming out; my chance to tell everyone (well…realistically…anyone who wants to hear it) how it REALLY is to live with lupus as a single, young (30-year-old- no comments please) woman. I have been thinking for many months on starting a blog in hopes to help anyone who may be in my shoes. I am lucky to have not only a great support system of family and friends (not to mention a great team of doctors); but in my circle of support I have a dear friend (I will call Veero) who is a “veteran” to lupus. During my “What the hell is happening?! and the “Is this normal?!?” freak-outs, I am able to send her messages and pick up the phone when it hurts to type. But as you may know, lupus is not an equal-opportunity disease, as it affects every person differently. Although we are similar in age (30 and fabulous), single and both trying to live our life, Veero and I have very different lupus-characteristics.
There are many books out there related to lupus. But from my research, they are from a doctor’s point-of-view who is giving you facts and “what-to-expect”. However, these “what-to-expect” seem to be repeats of what you learned from your own physician and from your own web-searching (let’s face it- your Google search history is most likely comprised with Lupus AND fill in the blank). For example, “limit your exposure to the sun. When out in the sun, wear sunscreen” (No SHIT).
The other books come from the patient point-of-view, expressing their journey of lupus-symptoms and frustrations (I will be doing this as well) BUT these patients are different from me. They have their career established, married (some with children), and it seems like the majority of their goals have been met prior to lupus. I am that young-professional who had so much to bring to the table and assumed that I had all the time to do so. YIKES.
During a lupus-hate session over brunch, Veero and I expressed how we do not have voice (me more loudly- I am argentine/jewish/spanish/italian). Finally, after exhaustion from bitching, we decided to become the voice. Because our experiences and perceptions are different, we both have our own blogs. I recommend you visit Veero’s blog (plug!).
So here is my chance to be that voice. Stay tuned as I will be talking (and most likely queening out) over the daily aspects of my life with lupus. This will include social (i.e., dating, keeping a social life), professional (i.e., trying to keep succeeding in work), and personal (i.e., everything else) aspects of life. Although, it may seem like I am bitching, I am not an angry women. I am just saying what everyone else is thinking and saying it with a smile. We can get through this, because of that fabulous attitude we carry.
More to come…
“If you don’t like something change it. If you can’t change it, change your attitude. Don’t complain” – Maya Angelou