Always check your toothpaste.

If it hasn’t been obvious, my health has been up in the air recently. After two months too long with hives, I found myself on a mission to figure out what was going on with me physically. Here’s the deal with lupus: everyone is going to tell you, well, it might be your lupus. But it also might not be your lupus. And as a result, you may find yourself equally, if not more confused than you were prior to investigating your health. Well, who doesn’t like a good mystery?

Off to the rheumatologist, I went and was told- well, it might be your lupus. But it also might not be your lupus. 

Off to the dermatologist, I went and was told- well, it might be your lupus. But it also might not be your lupus. This visit came complete with a brand new topical cream! This topical cream so closely resembled my toothpaste that I almost died when I thought it was my toothpaste.

toothpaste

not toothpaste.

Whoops.

But these visits weren’t enough and the hives have made themselves permanent residents, so I found myself at the allergist. If you have never gotten an allergy test, and this might be weird, they are oddly satisfying. Essentially, you get stuck up with a bunch of histamines and it’s a waiting game to see what “pops” up. I know, I’m weird. As I sat patiently in the waiting room, the itching slowly began. Naturally, I hoped my prayers would be answered as I begged to the bread gods, don’t let it be gluten, don’t let it be gluten. And while it wasn’t gluten, it was eggs. And rice. And mustard seed. And suddenly, it was as though the only food I urgently needed in order to survive was a mustard frittata over jasmine rice.

As much as this pains me to do, I’m going to be responsible and follow my allergist’s advice. For two weeks: switch my detergent, no more fabric softener, use skincare products that are less aggravating, and cut out the food I’m allergic to. Then reassess. Real talk, I’m not ready to say goodbye to eggs- is it wrong of me to refuse to give up on them? I just feel like they wouldn’t give up on me.

Finally, I checked the mail yesterday and found a cookbook for food allergies. It took some real PI work (a post on facebook) but I found out this anonymous gift was from my mom. Despite the curveballs, knowing I have love around me, even eggless love, makes up for it all. And here’s the best part of all for my husband, if there is one silver lining: I meal prepped the hell out of this week and this little lady is about to get crafty in the kitchen.

That being said, I will take any egg free suggestions and yummy recipes you are personally fond of. Please! Share away, my friends!17097415_10102653851552172_6633664162230221689_o.jpg

Wait, you weren’t invited?

That must have been why I didn’t see you there. Not that too many people were there. Or anyone for that matter. It was actually just a party for one- THE Pity Party of 2016.

I would say that it was better than the Pity Party of 2015 and definitely better than the 2014 Party of Pity. Not quite as good as the one back in 2004, but I’m not sure any of them can beat that banger.

I would even say that I’m not sure if this year’s fiesta has come to an end. It’s kind of like when you are a kid and your birthday manifests itself into your birthmonth. Granted, birthdays are much more rousing than lupus and also contain a considerable amount less self-loathing.

Pity-parties are boring. Stale. Monotonous. Lonely. And I’ve been trying to end the soiree. But I want you to know that having a disease can feel a bit like quicksand in that the more you struggle, the more quickly you become in engulfed in the weight surrounding you. And if you ever are trapped in quicksand, check whether or not you are being weighed down by heavy items. If you are, release them.

Disease can make you miss yourself and ask questions like, where did she go? They can make you forget that you have accomplishments. That you are a fighter. That you have a sense of humor. They can make you forget that you are deeply loved.

Have you ever woken up after an ongoing sinus infection with a clear nose? You probably sat back and thought to yourself – nose, I will never take you for granted again. I love breathing and I will never forget this beautiful moment of nose clarity.

Years ago I started this blog as a reminder to myself to value both the grandeur and simplicity of life. The moment I realized how fortunate I was for my health and that I had the ability to challenge myself mentally, physically, and emotionally.

I hope you are never so unfortunate that you find yourself stuck in quicksand, but if you are take this advice:  if you simply relax, the sinking will cease.

 

 

The Breakup

The phone rang twice. A feeling of dejection resonates as I hold the phone to my ear. This wasn’t the only time they have made my life more complicated than it has to be. Tears well up in my eyes as I hang up the phone, shaking in frustration. It’s the first rheumatologist that I’ve broken up with. The others were simple – one retirement, the distance was too far with another – I guess I thought this guy was the one.

Strike 1: non returned phone calls

Strike 2: thrown out paper work by clerical staff because they didn’t think my blood work from another doctor was “relevant” to my lupus

And you’re out: As I try to schedule an emergency appointment mid-flare, I hold a conversation that borders on comical:

Wait, who is this?

Talia …

I heard you and you said your name starts with “R – U”

OK, well, my name is T-A….

Well, what do you want us to do? Should we forward your blood work script to Quest (Quest is where I get my blood work done)?

Yes, I would really appreciate that!

Well, I don’t know the number. So I don’t know what to tell you.

Do you want me to look up the fax number for you? I’m also happy to pick it up or take it somewhere else.

Oh, also, your appointment has to be cancelled for Monday. We are changing office hours.

I could feel my blood rolling into a slow boil, my ears becoming warm to the touch. In fact, the following sequence truly resonates with my emotions:

😒😖😤😠😡

Granted, I’m not the most patient or even keeled person, but I had this sensation that moved me to feel like I deserved better. It was upon being informed that my appointment which is less than a week away had been cancelled without anyone calling to give me the slightest notice and that I would now have to reschedule during my workday. Their office hours are changing. Resurfacing in my mind were other times I felt slighted by their office staff, as though my health was an annoyance to their day.

I felt the words slip off my tongue before my brain had any input. And while I don’t regret my choice, this wasn’t the me that I know.

It seems as though this isn’t working out anymore. It looks like I’m going to have to find someone new.

Not like me because I have a complex and despise feeling like I disappointed someone. Go ahead, psychoanalyze me. How far has that gotten me in life? Not far at all. Which is why I’m coming to terms with the fact that not everyone will like me, in fact, I’m fairly certain plenty do not. But that’s okay because I was always told that the older you get, the less you care, and that is certainly true. Not to say I don’t care at all about what people think or I’d quit shaving my legs right…about… now. But as I said, I do care. So for me, ending this relationship with my doctor was not a simple task.

Would I allow a friend treat me like this? A significant other? A family member? Co-worker? Stranger? Anyone. No. No. No. No. No. No. 

And there I was – my face turning red, a fiery sensation burning from somewhere deep within. Everything in me that cared about what these people though about me vanished as I was reminded that the only thing that matters at the end of all of this is my health.

So after a six year relationship, my rheumatologist and I are broken up. And call it quick, but I’ve moved on. If anyone asks, it ended because I know that I deserve to be treated well.

Here’s the thing though, I will break my own new rule and tolerate being treated like a second class citizen by one doctor: The veterinarian. Frankly, she connects much better with animals than people and I only request that she is kind to my dog.

tilly

Year to See.

What happens when you have been flaring for nearly three weeks? Your mind goes haywire with thoughts and mind boggling ideas. Case in point, last week I had an appointment with my  ophthalmologist to get my eyes examined because of the medication I’m on for lupus (see here). Hydroxychloroquine, which is used to treat and prevent malaria, can also be used for lupus and rheumatoid arthritis. And for all that it does for my health, the yang to it’s yin is that Hydroxychloroquine can also cause retinal toxicity.

So there I am, sitting by myself with nothing but my thoughts – Never a good thing when you have an overactive imagination. Great when you are a kid. Terrible as an anxiety ridden adult. So I’m zoning out to the point of what-the-shit when a profound thought crosses my mind. Now I need to be transparent for a hot minute before I tell you about that thought. I have not gotten my eyes examined in four years. I am supposed to go every 6 months. Six Hail Marys…? Seven?

The thought that crosses through my mind: The doctor is going to tell me that I’m going blind. My mind instantaneously races on an adventure because now I’m focused solely on how my life will be different as a result of losing my vision.

I decide that I’m going to have to put in my notice at work immediately. They tell me that I can take a sabbatical. John will need one too so we are going to have to tap into our savings. We are going to explore the world and the journey has to begin tomorrow. Our first trip will start with that great United States road trip John has wanted to do since the day I met him but I kept postponing because life got in the way. We will map out a route and see where it takes us, planning only the hotels and motels in advance. Dog friendly only because our pooch rides with us.

“…Ta-lee-yuh? Tail-yuh?” – That’s my cue. For the record though, it’s pronounced Tal-yuh. 

I’m pulled out of my trance and into a dimly lit office with a man with an equally bright personality. We talk about my eyes, he dilates them for tests, I do some Hail Marys, and we praise my excellent vision- to no effort of my own, just genetics.

I walk out of the appointment with my vision fogged and as John drives me home I tell him about the question. I find myself exploding into a frenetic explanation of how our wedding would have to be changed. I tell him that it is going to be offensively bright. And by offensively bright, I mean to say that it borders on downright tacky. Additionally, I need to make it to China because I promised myself that I would. You can stay or you can come with. But I’m going. And I want to ride in a hot air balloon. Our conversation gets to a point where we are actually bickering about the logistics of my make-believe plans. The safest choice is to put the kibosh on the conversation and come back to it at a later date and time.

John expresses how he doesn’t understand my minds ability to operate at such a continuous rate of thoughts per second. I don’t fully comprehend this either because I really would find it preferable at times if my mind looked more like this:

white_room_stage_by_loveismymuse-d517wc6

and less like this:

the-obliteration-room

All in all, the trip to the ophthalmologist taught me a few things about myself- For one, I recognize that I was challenging my health. This is something that deeply bothers me because I do not encourage it or advise it in any way. I was avoiding going to the ophthalmologist because I was fearful of what they might tell me. Going with the theme of transparency, I hated the prospect of someone telling me the very medication which I am dependent on could be hurting me. Avoiding getting my hair cut for a year to avoid a bad haircut experience only to wind up with worse hair because I refuse to get a haircut is one thing. Losing my vision because I don’t want to hear that my medication could be affecting my sight is another. And while the focus here is about my fear of losing my vision, it is really about losing anything.

Ultimately, the what would you do question could be applied to a multitude of situations and it had me thinking about my own life with lupus. When I was diagnosed I genuinely felt as though I lost something. The idea of giving up any other aspect of my health is what puts me in a tizzy. If someone had given me a years notice on this whole lupus thing, how would it have shaped me? Can we even live in a world of what ifs?

My trip to the ophthalmologist (and mental adventure into la la land) allowed me to reflect on how limiting we can be to ourselves in our adult life. Does it take a health freak out to appreciate what we have and what the world has to offer? We can’t avoid living because life will always get in the way of plans. And none of us can predict the future because we are not ancient Greek oracles. Maybe we have to ask ourselves questions that unnerve us to figure out what it is that we want out of our existence.

I part with this question: Why haven’t we gone on the Great American Road Trip that we keep talking about?

And this answer: We are going on this damn road trip!

And then one last addendum to the original answer: But after the wedding because I feel like I’m really busy until then.  Because I have to be slightly practical.

Reflect: You have one year until _______, what do you do?

Dirty Girl

I’m at a summer block party when all of the sudden I notice my arms look dirty- as in, do you wash yourself properly dirty. The answer is, yes, yes I do. It must be fairly obvious that I’m checking myself out because a girl that I just met confirmed that yes, they do look dirty, but she would like to add that she doesn’t think I’m a dirty person or anything. Why, thank you? It’s always good to know that you can have marks on your body that look like filth but your outward appearance is still clean enough that strangers will give you the benefit of the doubt that you do take showers.

I thought these marks were weird and I guess I have noticed these dark patches that creep onto my arms and face every year, yet somehow I have pushed them into a place where I acknowledge them, but don’t think too much of it. Oh yeah, I get it on my face too. A big ol’ mark that only comes out in photographs that spans across my forehead, and a nice little mustache line which I don’t like telling people about because then they will stare at it the next time they see me. Just tell me you are doing it first so I don’t feel self-conscious, please. What’s odd is that I have noticed these things, but seriously displace their existence. In fact, I thought I was just really bad at bronzer for a while and would try to even out my forehead. This post is getting more moronic the longer I write…

10174792_10100264597007489_8319281553386916600_n

Don’t let the dark mark on my forehead confuse you for Harry Potter.

In the shower I have tried scrubbing my arms- I bought a painful loofah because of this situation. This is not a joke! I would scrub and scrub to no avail thinking that maybe I needed to stop buying CVS brand sunblock and take it up a notch to Banana Boat. Fast forward to this morning. I am perusing the internet and stumble across a blog entry from butudontlooksick. It’s my lupus! I know House says it’s always lupus, but Talia says: Nah, it’s probably just dirt. 

So it’s not that I trust everything that I read on the internet, a la this chick:dcc6c074569bd39866f43364a26ff021571f79c8b2fc1846135f598b850fab2d5cd9bdd28650fc93bc22bee882c69621

But I do love myself some WebMD. If it wasn’t for multiple rheumatologists confirming that I have lupus, I most definitely would have self diagnosed myself with something incurable and insane…like lupus. Either way, today I allowed the internet to confirm my derm (as in epidermis). The “dirt” is actually skin pigmentation from the sun. Not muck, filth, grime, or grub. Then again, maybe I should go to the doctor and have them corroborate my self-diagnosis from a blog post with a visit. Or, maybe I am just dirty.

Lupus and Travel

I recently made a vow with myself to stop sleeping with my Ipad and cell phone on my nightstand. It all started with these scenarios that maybe you are familiar with as well:

  • you wake up to find out (always weeks later) that you responded to multiple texts *while sleeping- not that you will remember sleep-confirming to that birthday party.
  • and/or looked at your messages to fall back asleep and never acknowledge the text message again. Sorry I never responded… 
  • and/or look at your messages and become in a state of panic/anxiety because WHY DID I NEED TO CHECK MY WORK E-MAIL IN THE MIDDLE OF THE NIGHT?

It’s a sickness, an absolute addiction, and sickness that many of us suffer from… or am I alone on this one? Please tell me I’m not alone on this on.

In an effort to end example un,du, and trois above, I have relocated my drug of choice (just to be clear I’m talking about an Ipad and cell phone…) to across the room and I have made sure they are on silent. Best part about it?

  • No more sleep-texting 
  • No more reading/sleep ignoring
  • No more middle of the night technology induced anxiety

and my personal favorite part- waking up to social media alerts. I’m such a sucker for a good message and waking up to a question from a reader, known as a.r., made my whole morning:

I came across your blog when I googled something like “birthright Israel with chronic disease”, so I have to ask, were you able to do everything? Did they let you sit out if you couldn’t?

I have a type of arthritis and I’ve been putting off birthright for a while now. I’m not in remission but I’m pretty stable at the moment, and I’ve traveled quite a bit. but group trips make me nervous – i’m not “out” (no one really knows I have arthritis), and I’m worried about things like the hiking (mostly Masada), and other activities. Like you mentioned in one of your posts, the fatigue hits me too. Did you find them accommodating to you? Were you able to participate in everything?

thanks 🙂

Riddle me this:

HOW IN MY ONE YEAR OF BLOGGING HAVE I NOT MADE A POST ABOUT TRAVELING WITH A CHRONIC ILLNESS?

Answer: I’m really not sure. So, here I am to address A.R. and their question!

Dear A.R.,

Let me start off by thanking you for your thoughtful question and I hope I can help to ease some of your concerns. I’m thrilled to see that you love to travel- life can seem overwhelming when living with a chronic disease. I’m not here to sugarcoat life with a disease either- I started to write a response and I erased an entire paragraph… did I really just say “now I live my life to the fullest.” That’s half true and half untrue. I wish I did not have a disease that can feel debilitating and limiting- no laying out in the sun, no staying up to all hours, if I do too much activity, I might have a flare. blah blah blah. There is no easy way to say it, but let’s be real- that sucks. I remember when travel was a thoughtless process and I took my health for granted. Now I have to travel smart:

  • Do I have my medicine?
  • Am I able to get my medicine if I forget it?
  • Do I have insurance that will cover overseas expenses if necessary?
  • What if I get sick?

I have asked these questions to myself each time I plan for another trip as I’m sure is the reality for many living with an illness. But! I still travel. And! I now appreciate the fact that I am breathing, walking, living, and fortunate enough to experience this amazing world. Know thyself, right? Meaning, I have learned my limits while still appreciating what the world has to offer- especially Israel, a place that I too pushed off for far too long.

Israel is bikram studio level hot- for those of you that don’t speak sweat, I’m talking 105 degrees hot. And the sun is excruciatingly sunny (I couldn’t think of a better description, deal with it), no hyperbole. I would love to think of more similes to further explain the sun to heat ratio but I think you get the picture. And to do some basic math for you: 

Lupus + Sun = ughhhhhhhhh*

http://www.lupus.org/answers/entry/how-lupus-affects-skin

So I packed a ton of sun block. Like two extra bottles worth. And I crossed my fingers and hoped for the best. And on a few occasions when we sat by a pool, I sat in a shaded area. That’s the reality of my disease. We also did more physical activity on extremely limited amounts of sleep every.single.day. BUT I love being active. I can see Israel being a very challenging trip for a person that is inactive. I know it can be difficult for a person living with pain to workout, believe me, I experience lupus as though I have rheumatoid arthritis. There are times making a fist is excruciating and on most days a dull ache in my joints is the norm. I would never suggest pushing yourself past your comfort zone, but I started to run after I found out that I was no longer in remission. I am a firm believer in living to the best of my ability and since I refuse to give up deliciously scrumptious foods, it was time to become active. Better now than never. Now, if you cannot participate in all activities, that’s fine too. There are additional people on the trips to be there for those that cannot do it all- a friend with severe asthma made the decision to meet us at the top of Masada by cable car (they have those!). At the end of the hike to the top we were given the option to take the cable car to the bottom or to hike to the bottom:

IMG_1821

I chose to hike to the bottom. And my legs were shaking, and I felt invincible. But I did it because I knew that I was physically able to- it was my choice. If I had felt sick or fatigued I would have chosen to take the cable car. Having the option made me feel safer as well.

Finally, I remember the feeling of not wanting people to know that I have a chronic illness- are they going to judge me? pity me? be overly cautious with me? pay any attention to me? I didn’t want any of that, particularly those sad, pitying, you have a disease, eyes. Please, not those! That being said, not sharing your illness with others is your choice, but it’s truly important that before you go on any big trip you let the travel organization know. Initially I was furious that they made me receive approval from my rheumatologist- am I a child, Israel? I’ve been dealing with this for ten years. But I get it- Not only is it their liability if something were to happen to you, but even more important is your health, well-being, and safety, and they can’t provide that for you if they don’t know what you may or may not need. 

I want to be loud and clear: My biggest regret in life would be to stop living for a disease that could kill me. Instead I believe in living smart. Emphasis on living. Because, in the words of Socrates-

The unexamined life is not worth living

 

 

ughhhhhhhhh* – fatigue, soreness, swelling, skin rashes

Budgeting Life

On a plane ride to Seattle I found myself indulging in the young adult genre. Yes, I dabble in Harry Potter, but I generally do not read young adult books, or novels that my 9th graders love (we have different tastes believe it or not. Exceptions made for Forever 21). But I caved. I bought The Fault in Our Stars. And now I can say I cried sobbed on an airplane. I totally attempted to hide my tears under my hair that I brushed ever so casually in front of my face, while I pretended to look out of the window – hooray for a window seat.

To summarize, in a sans spoilers way, The Fault in our Stars is a very touching (and conversationally unrealistic- teenagers do not speak like this) story about two youths who meet in a cancer support group and subsequently fall in love. And that’s where my summary will stop so you don’t despise me for ruining a possible summer read.

This book would have made Bear Grylls cry, but it really got me thinking. I do not have cancer, I have never undergone chemo, my disease has not put me in the hospital, but… in a similar fashion to our protagonist, lupus has created an emotional blockage for me.

Everything I’m saying from this point forward is not to suggest that everyone with a chronic illness feels this way so I can only speak to my own experiences. Disease had a funny way of making me feel undeserving of love- no one explicitly told me I did not deserve love, but it happened. This is an interesting conundrum as a serial monogamist, but fully tearing down walls has been a struggle. When I love, I love with all of my heart, but I come with endless apologies. Please see: exhibit a: endlessly apologetic for feeling exhausted and exhibit b: I physically can’t. So shut up.

Exhibit A: I’m not falling asleep because I’m bored, I’m falling asleep because I’m fatigued. So shut up.

Energy needs to be budgeted when you have a chronic illness. Choosing to to spend your energy is a task in itself. Food shopping, laundry, cleaning, and other simple tasks can expend so much of this priceless commodity. Prioritizing friendships, relationships, and myself (god forbid) is an effort that can only be truly understood by a person who experiences fatigue.

I was fearful of jeopardizing my relationships by saying no. I also hated the idea of using my “lupus card*”and being viewed as the sick girl. I perceived my inability to juggle it all was a failure rather than my reality. So, I would continuously wear myself into the ground because I cared more to follow than to lead. How can others love you when you struggle to love yourself enough to prioritize your own damn needs?

This took a lot of time to come to terms with- aka, last year. I needed to accept that I had lupus in order to live honestly with it. On the day that I woke up and made a vow with myself that I would prioritize my health I could feel a weight come off of my shoulders. And yes, I do break out the “lupus card.”

Exhibit B: I physically can’t move anymore. I’m serious- my hand could not close into a fist if I wanted it to. So shut up. Or face the wrath of a partially made fist.

Exhibit B falls into the category of physical pain that can accompany lupus. It manifests itself in me like rheumatoid arthritis (severe joint pain and difficulty moving as a result) and ultimate discomfort everywhere. Best way to describe the sensation: imagine your body is one big black and blue. Now poke that black and blue. That’s what I feel when I’m experiencing physical pain.

Let me explain myself like a wild animal- if I show pain it’s a weakness and I don’t want you to know that I’m weak so I’m going to go into hiding until I die or feel better. So far I have crawled out of my den and survived the pain every time. Go me.

What it comes down to is that I have a big sensitive heart for those that I love. I hate seeing them in pain. When they see me in pain, they feel pain, and as a result I feel pain. It’s a sick cycle. For years it was easier to put up an emotional concrete wall and not let people get close enough to me to pity me. They will say they don’t but their eyes tell another story. When people pity me I feel pathetic- I need to get over this. And when I have gotten very sick, I have needed help. Now I’m dependent on others- oh boy. This is the worst stage for me because I love my independence. I have needed help on every level from getting a glass of water to unbuttoning my pants. As a wild animal, I rather die, but as a human I succumb to their love and allow this much needed assistance.

My friends- It’s so easy to trivialize someone’s daily tasks and compare them to your own. I know getting a water is easy and that being tired when you’re a hard worker is a norm. This is why I have grown accustomed to having people struggle to understand SLE lupus and chronic illnesses in general. This is why having a relationship when you have a chronic illness is challenging for both parties involved. The truth is: Illness or no illness, you are fortunate to find a person who genuinely accepts you as you are. And we all deserve that.

I’m lucky to say that I have many relationships (family, friends, boyfriend) in my life that do not judge or question or push or expect and that take me as I am. I’m not sure I will ever come to terms with the fact that this is a truth- I think I may always have trouble accepting this. But like I said, ten years ago I rather go into an isolated space and hide my pain, fears, and disease entirely. Now I’m shouting this shiz from the rooftops. I have lupus. Deal with it… Or shut up.

*lupus card – this is an imaginary card that I pull out when I’m saying no. Used in a sentence… “I can’t to tonight. Don’t make me use the lupus card.”

Wear your Sunblock.

from the time I was little I would brag about my badass immune system. I was the healthiest kid ever minus a few kid bouts of strep. When I got sick I knew something wasn’t right.

I’ll take you back to 2002 when I was fifteen and it became imperative that I get “in shape.” Maybe it was peer pressure, boys, or the developing girls, but all I know is I wanted to be able to look good and not breath heavily while walking up a flight of stairs.

I had just bought some new sneakers, this is step 1 for starting a new workout regimen because this is the magic that creates motivation. I put those pups on and got my butt in gear. Now- I will be honest. I definitely ran under 1 mile. I attributed this to the lack of sidewalks and the rolling hills of upstate New York. Hey, it was day 1, day 2 would bring better results. Right? Wrong.

The following morning I woke up in agony. My legs ached, my arms ached, my face ached. I just assumed, man… I am really out of shape. Fortunately, my mother is a nagger, and I mean that with love. She was my biggest advocate and for that I am so lucky because I know not all people have their own nagger. You need someone to look you in the face and say, no, something isn’t right here. And for that, thank you, thank you, thanks to my mother who dragged me to every single doctors appointment.

The road to a diagnosis was not a quick one, but in the scheme of lupus it was- I was diagnosed within 1 year. Within that year came multiple doctors and multiple diagnoses (none of which do I actually have). First I “had” a thyroid condition, then I “had” rheumatoid arthritis, eventually I would be told it was lupus. In order to be diagnosed with lupus you need to fit into a certain checklist because there is not a single distinguishing feature of lupus. The indecisiveness of the diagnosis is probably what makes me a complete idiot with this disease sometimes. I will be truthful with you now and say, I have not always been the best lupus patient. I have forgotten to take my medicine, I have lowered how many pills I take because I don’t think I need them, I have skipped eye exams that I have to go to because the medicine I take has side effects that can damage my vision permanently. Why do I do these moronic things you ask? I don’t entirely know. I often imagined that it is some big mistake and that I don’t have lupus. Well the truth is, I have lupus. I’m beginning to embrace that I do. And I can still live.

I created this blog for a few reasons. One reason is because of the confusion and fear that I faced when going through the initial years of this disease. I felt abnormal, angry, upset, different, I asked “why me” like I was the only person in the whole world with any problems. This was in a pre-facebook pre-blog crazy world, and I felt alone. If I can create hope and an outlet for one person I will be happy. I am finding my way through this disease and as I sit here writing I’m thinking, time to take my medicine.

My rheumie (rheumotologist) and I have a real love hate relationship. He yells at me and I promise to be better. Yesterday I had a followup appointment. He told me I’m doing great. I asked him a ton of questions about running and working out and bikram yoga. He said, “you can do anything. live your life. wear sunblock. seriously, go put on your sunblock.”