From Exercise-Fiend to Vegan: Moving Forward

I spent the better part of the day trying to figure out how to change.

Should I go vegan? Vegetarian?

Should I try getting up at 5am every morning and walk to the end of the block again? Then in a week around the corner? Then in two weeks around the block? Or should I try to get in the pool daily and swim?

Should I cut out dairy? Maybe carbs.

My doctor gave me the ok to try whatever I wanted and gently reminded me nothing would really make a huge difference until I was off all these steroids saving my life.

…off all these steroids saving my life.

I’m not sure about the saving my life part. Sure they are saving my organs, but what life are they leaving me with?

There has to be a happy medium here. I’ve been trying to find it for a long time now and I’m at my wit’s end. I have to LIVE.

I want to enjoy myself not just stay alive. And my situation is not so desperate where I can’t think about doing these things, even my doctor agrees. It’s why he has no trouble with me flying again at the end of the month to see family (so long as my lab results and body are doing well) and it’s why he won’t stop me if I want to try new things.

The question is…what? I know I’m limited. I know I won’t put my body in danger, it has to stay here and healthy for those I love. But I need to have A LIFE. A life that includes romance and outings and friends and socializing and fun.

I feel like drastic changes are needed in order to take control of this situation. I know I can’t take control of Lupus, but maybe I can change enough of my habits and my lifestyle that Lupus will have less of a chance of seeping into every part of my life…as it has.

Right now, post hospital stay, it’s all-consuming and all around us and all a little too much. I can’t push it out of my mind or shield the family because there is too much aftermath to deal with. Hopefully that portion will be over with soon. Then I can go about life for them without mentioning the “L” word for a while.

In the meantime I will formulate a plan to move forward, again. Thus far I will begin school again in the Fall. Enough to keep my brain going so it doesn’t go numb and I work towards a goal.

Physically it’s harder. I have limits to what my body can do, but they aren’t so great that I can’t overcome them and they aren’t so great that every so often I can’t get off my duff and move. It won’t be easy. It will take time. But change has to come.

I can’t live like this. Ideas are welcome.

Welcome to Hotel Henry Mayo

I am still trying to wrap my head around what happened. What went wrong.

Except nothing went wrong. At least, not that I can pinpoint just yet.

I got a stomach bug. Just a simple stomach bug.

I was learning my limits. Learning to deal with this disorder. Learning how to live again and all of the sudden…a three night, four-day stay in hotel Hospital complete with blood transfusion.

Still trying to assess hospital damage physically and emotionally on entire house

Thank you to all the friends and family who brought over meals, visited, and were just plain there to listen as we waded through the unexpected stay.

I have so much more to tell you and to say…about how this came just days after a very stressful test by my disability insurance company, wanting to make sure I really deserve that check they give me…about how this came after telling White House staffers living with a chronic illness means I could be hospitalized at any time (bingo!) and our lives turned upside down- like so many millions of Americans. And about my roommates, the first of which did not have insurance. The second was trying to figure out Cobra and send in a check on time so her hospital stay would be covered.

Sometimes I wonder how we Americans survive. I have to think about the bills that will arrive from this stay instead of concentrating on getting well. And worry that my disability check could be gone at any time for any reason as they put me through test after test to make sure I’m really sick.

Maybe this last round of treatment that had to be administered in the hospital, and two units of AB – transfused in the hospital, will be enough for Mutual of Omaha.

Probably not.

Then again I have my appeal for Social Security disability in October…

I am thankful the Affordable Care Act means Aetna can’t fight as hard to throw me off my husband’s insurance when they see I was admitted and received a ton of treatment. And that those lifetime caps aren’t an issue- or we’d be screwed. I don’t think people understand just how important this first step at changing our heath care system really is…and the GOP fight to take down ‘ObamaCare’ wages on while we sit in hospital beds moaning and complaining about the system.

Here is that first step at changing the system. Just a reminder. It may not matter to you right now, but it will eventually. When you’re at the ER with your kid, or when you’re taking your Mom to get her physical (a ton of preventative care measures are free now). I know, I know. I’ll stop. But not until you go check out HealthCare.Gov and at least know how it will all affect your family.

More later as my crusade continues…just not from a hospital bed this time. I hope.

The Vest Family Goes to Washington

It will come as zero surprise to you, my dear readers, that I have trouble sitting still. From the minute I was diagnosed with Lupus, I knew I had to do something and do something big. There was no way I was going to take this disorder laying down and no way that once I was capable I would use everything I had to bring attention to Lupus and just how crappy it can be.

Keep in mind where we started:

My family Googled the disorder and found outdated information and very little information. And what they found scared the hell out of them.

When we finally got some good info, we were told research was scarce and drugs for the disorder even more scarce.

As I lost organs to surgeries and struggled with pain and fatigue and went from doctor to doctor, no one seemed to know what in the hell we were dealing with. Four rheumatologists. Three gastro docs. Specialists from UCLA and Cedars-Sinai. From there,  a Lupus advocate was born.

As I continued to rely on my husband for support to get me through those tough days and to just pick up the slack around the house, a Lupus advocate was born.

As my young children visited the hospital time and time again, or were rushed to a friend’s house while Dad drove Mom to the emergency room as she moaned in pain once again, two little Lupus advocates were born.

As part of the Lupus Advocacy Summit, my family and I dipped back into my “other” life…the one I had before Lupus changed it all. The one you all may remember where I traveled a lot and actually did something other than sit on my couch, complaining about pain or fatigue. The one where I spoke to large audiences in Austin or Reno or New York or Washington. The one I miss, terribly. The one where I met many of you in person and we exchanged hugs.

Then you watched me change.

Sure the political rants and raves continued…but not as much.

The hockey fan in me still used twitter to watch playoff games…but not as often or as closely.

The tweets weren’t as frequent. The Facebook posts a little light.

My body would rather sleep, frankly. Or it would rather have its medication, THEN sleep.

You watched the photos continue to be posted but I was in less and less of them, frightened by my steroid puffed up figure and face.

Yet you continued to cheer me on. For that, I am forever grateful. It gave me the courage to remember who I am and what I am capable of.

So it occurred to me that I know some pretty damn important people, and they just might be able to help. After all, I do share my life online and millions have watched me go from interviewing President Barack Obama to an IV in my arm, receiving treatment, twice per month. And I KNEW more needed to know about auto-immune disorders and chronic illness. The toll is takes on our lives, on our finances, on our loved ones. Hell, you read my tweets as we battled with JP Morgan Chase over our mortgage. As we continue to battle Social Security and Mutual of Omaha for my disability.

So I made the call. Or, more accurately, I sent the emails. And without hesitation the White House accepted my offer to sit down with my family, and a representative from the Lupus Foundation, to hear OUR story…and yours.

Yes we are at the White House #lupusadvocacy we have some important meetings

They want to help. They want the new Affordable Care Act to help. And we are all going to work together to make sure everyone stays informed on how to put the new healthcare.gov information and site to use for YOU.

That means when I am well enough I’m going to help spread the RIGHT information to the public on how they can access the marketplaces, where they can find preventative care (did you know a whole lot of it is FREE NOW thanks to ACA?) and just plain how they can get HELP.

And keep in mind,  just as importantly…they listened. The White HOUSE listened as I talked about what many of us go through: the multiple doctors before we even know what the heck we’re dealing with. The bills that never end because we don’t have a cure, just ongoing treatments, the endless toll on our support systems- if we even HAVE support systems. And with wide eyes, like so many others, they listened with sympathy and awe learning for the first time what it’s like to have Lupus, an auto-immune disease, a chronic illness.

Lupus advocacy reached the White House this week and that is just the start. Now the real work begins as we turn our advocacy into funding, research, and relief for all of those- myself included- who suffer.

I also want to note that we were lucky enough to sit down with our own Congressman Buck McKeon. Now, I know what you are thinking “OMG! Erin sat down with a Republican and no blood was spilled and no headlines were made and no one was arrested?” It’s true. The Lupus folks set up the meeting and my family and I happily accepted. We need all the allies we can get in this fight- Lupus is non-partisan.

Congressman McKeon was gracious and asked us many questions about the disorder. We, in turn, asked him to support HR 460 – The Patients’ Access to Treatment Act. I truly hope and EXPECT his support.

 

We Have Work To Do: National Lupus Advocacy Summit 2013

My hands are a bit swollen tonight. Might be the heat. Probably is the arthritis. More than likely it’s a combination of the heat and Reynaud’s and the steroids reacting to the total nerve of my doing one load of laundry- WITH the children’s and my husband’s help.

They carried. I stuffed in the clothes. Emptied the clothes. They carried. I sat and folded. They carried.

For this I get swollen hands.

Thanks Lupus!

It’s just one of the little things. One of the tiny, little things I deal with daily and try my damnedest not to complain about because I can sit and fold. And as most people would say…I don’t look that sick.

It is for that reason, exactly, that I’m doing the laundry. So it can be packed into a suitcase and my family and I can fly to Washington, DC on Friday.

Why Friday? Because on Monday and Tuesday we hope to talk to some important people about our life. About how I don’t really look all that sick, but how life isn’t exactly normal around here. How I need help with the laundry, the dishes, and even need help raising my arms to brush my hair when days are bad.

Why Friday again you say? Because I can’t leave the day before, like most people. If I am going to fly somewhere I need several days to recover before being strong enough or comfortable enough to take on another task, like meeting with those very important people. So even though we may not tell our story until Tuesday, we have to leave the Friday beforehand.

These are small things though. So small. They are nothing compared to what we’ve been through and they are nothing compared to what others go through.

I’m lucky. My family is lucky.

Way to go @detroitredwings!!!!

You see, when I was finally diagnosed with SLE or Systemic lupus erythematosus (along with a host of other auto-immune disorders like fibromyalgia and rheumatoid arthritis and Sjögren’s syndrome and CIDP and Reynaud and unspecified connective tissue disorder and neuropathy and so on and so forth) we had family to support us. I had benefits through my supportive employer and we had decent savings and credit to help us through.

We still ended up nearly losing our home. We still ended up in crushing medical debt. We are still battling with Social Security Disability Benefits. And my private disability benefits through my employer continue to put me through second and third and fourth opinions and tests- the latest of which will include a neuropsychological evaluation to make sure it’s not all in my head or that I’m not too smart or too stupid or insane or sane, it’s not very clear why they are putting me through this all day, sit down test. Mind you this is on top of the stack of lab work they already have in their possession documenting my colon resection, my gall bladder removal, my stroke, my total hysterectomy, and of course the continued treatment that includes weekly inflammation tests, bi-weekly IV infusions (three days a week, 4-6 hours per day) and the BIG infusion that comes twice a month every four months that knocks my immune system so low I’ve even gotten a scrape INFECTED just after the IV.

Did I mention I AM ONE OF THE LUCKY ONES? We have the good insurance. We have the support. We have the roof still over our heads. I am able to charge our deductible so I can receive the treatment that so many can not afford. Not even with their insurance.

That’s why we have to go to DC. That’s why my 10-year old will wear a suit for the first time in his life, and my eight-year old will talk about Lupus to adults with more authority than any eight-year old has a right.

That’s why my husband will fidget with his top button under his tie…purple, for Lupus awareness…and try to keep it buttoned for as long as possible while also trying to explain just how shitty it is to be a caregiver to an ill wife.

That’s why I will humble myself and see people I haven’t seen in years, with my moon-face from the steroids and my weight gain from the steroids and tell them why ‘ObamaCare’ must remain in place or even the ‘lucky’ families like mine will lose it all for sure.

My doctor agreed a flight is not the best thing for my body, but so long as we are careful, the message we are bringing to DC is well worth the risk.

While we will be there, officially, for the National Lupus Advocacy Summit on June 24th-25th, you don’t have to have Lupus to have a story. I want to bring YOUR story to DC with us. We’re not just going to tell our ‘lucky’ story, because we know there are so many of you that don’t have it as well as we do. Or have it differently. We want to tell MANY stories. Ours and yours.

Share your story with me in the comments of this post. Let my family be your voice. Let us tell them of how you can’t get coverage, of how many times you have been turned down. Let us tell them about how you split pills because you still can’t afford your meds. Let us tell them about how just because you do not look sick, it doesn’t mean you are not suffering. Let us tell them about how your kids are handling it all. Your partner. Your parents, your friends, your employer.

They might even read your words directly.

This is your chance. Help us to help you. Let’s all make a difference together.

I want to type more. There is so much more I want to say. But it will have to wait because my hands remain swollen and I’m tired and I need to rest up.

We have work to do.

Comments are open. Use them. Spread this post far and wide to every one you know who struggles with chronic illness and needs someone, anyone, to tell their story.

 

Getting Ready to Head to DC for Lupus Advocacy Day

To learn more about Lupus Advocacy Day you can visit the Lupus Foundation.

Humiliation on Wheels

Swallowing my pride. That’s how I feel every single day I step out of the house.

Some days are better than others. I feel stronger, I feel thinner, I feel like I’m wearing armor.

Inevitably it all comes crashing down at some point. Because really I just pretend all day that everything is ok. Then the phone will ring, like it did today, and the company that provides my disability insurance wants to schedule a day long mental test. They want to find a way out of paying me and it looks like their next move is to show my brain is either sane or insane. Regardless, it is just one more test and one more trial and one more finger pointed directly at me saying “why aren’t you well yet?”

I’m not well yet because this is a chronic problem, assholes. And I am getting somewhat better but I’m still sitting with an IV in my arm getting infused with drugs constantly to keep me this way. Please explain to me how one is supposed to work while tethered to an IV three days a week for six hours a day? Grrrrrrrrrrr.

I long for the days when my inflammation marker tests would come back low and we’d all cheer. Now they bounce up and down and I don’t bother to even report the results to anyone. It’s all just so mundane and life, now. Boo. Yeah! Booo. Horray! Boooo. That’s pretty much how it goes.

Ordinarily having started horseback riding as part of my therapy would get me a pat on the back, but we just don’t talk about it. Getting excited means the possibility we will all be disappointed. I’ve also been doing more around the house (well, when I’m not feeling lazy…I’m a terrible housewife).

I’ve been trying to do more, while minding my limits. Going on field trips so I can be the Mom that can do things, not the one that stays home and does nothing. This past field trip was particularly hard for me.

If you’ve ever been to the LA Zoo you know it’s big, and has hills…lots of hills. And it’s usually packed with kids and sunny and hot. Disastrous combo for a Mom with Lupus and RA and Shogryn’s and Fibro and Raynaud’s and and and and and. So instead of packing a sack lunch and sending my 2nd grader on the bus with a gaggle of her friends, I had to do it the Erin way and rent a motorized wheelchair so I could attend.

I can’t just leave well enough alone.

This is my theory though: I can sit on the sidelines forever and keep pushing my limits every once in a awhile…or I can learn how to live with this illness and work around the hand I have been given. I will tell you right now, it would have been so much easier to stay home. It was the day AFTER treatment and I wanted nothing more than both kids off at school and me on the couch with my DVR’d Gilmore Girls and my feet up. I hate showing my moon face in public, I hate getting dressed to try to put a tent over this misshapen steroid body…staying home was the easy way out.

So naturally I couldn’t stay home.

I went to the damn zoo and rented the damn rascal scooter thingy and tried to laugh my way through it all. I did.

Because I humiliate myself for @aaronvest

But inside I was crying. Talk about pride swallowing.

I got the usual dirty looks I get whenever in a wheelchair, but almost more-so in the motorized version. It’s as if they think you just don’t want to walk the zoo.

Hey look at the fat girl in the rascal!

My daughter and I made a game of it- with her having fun keeping pace next to me if I slowed down or sped up. We both agreed we needed to try this next time at Disney, instead of having Daddy push my wheelchair. We giggled and had a fun day- with her learning about her chosen animal’s life-cycle and hanging out with her school friends. Just as it should be.

There is no way I would have lasted had I tried to walk. There is no way I had any business being there were it not for the motorized wheelchair. And even though part of me felt so very defeated to have to resort to such measures and to look like…well…to look the way I did…I’m glad I did it.

It was humiliating and freeing all at once.

I know that’s horrible of me to say. But there is a certain stigma that comes with being in a wheelchair and I was just getting used to that. A motorized wheelchair? Now come on…that’s a level that kicks it up another notch. And that will certainly take some more time to get used to. However it gave me the freedom to be present and in the moment with my daughter. It still wasn’t easy and I can’t imagine doing anything like that often…but for every once in a while, I can swallow my pride if it means giving back some “normal” to my family. Although I’m not sure how “normal” all of that is. A new normal maybe. One that allows me to do more, to be more.

Speaking of being more, I’m trying not to become just a lump of nothing while I wait for my body to right itself. I quietly enrolled at the local community college and took two online classes this past semester. I tried not to make too big a deal of it because frankly I wasn’t sure how it would go.

There is no way I can sit in a class yet. So online was my only choice. I didn’t have to be online at any certain time, which meant my endless treatment sessions and never ending string of doctor’s appointments were ok. It was what I could do, when I could do it. So I thought…what the hell? I can try, right?

No, I never finished my degree. I was working as a reporter and anchor while my class was graduating. At the time, it was a no-brainer. How could I turn down working in my field for classes in my field? By the time I was 23 I was anchoring the afternoon news and had bought my first home. However it still nags me that I never finished. Especially now when I talk to the kids about how important their education is and why they need to go to college, etc. So…back to school I go. Slowly. One class in the fall, online…maybe two depending on my health, treatment schedule, and how well I think I can handle it all.

At least this limit pushing experience didn’t require swallowing my pride as much. I’m actually very proud of myself. I’m doing my best to add things to my life that my body can handle and that give me some purpose. Not that getting up everyday and being a mother and wife doesn’t give me purpose, but I need to reclaim what Lupus has taken. I need to take back at least some of my life.

I had it all. Or at least, I felt like I did.

I want it all back. Yesterday. And it’s taking so long. And it’s so hard. And for every step forward there are two steps back and for every leap I cheer there are dangers I just ignore. Just when I think the testing is done and the blood work is over and the treatments can be spread a part a bit…I’m joking about setting up a cot at the doctor’s office because it’s all I do. It’s my life.

It’s not the life I want.

So that means some pride swallowing, some more white trash rascal scooter jokes, and maybe…just maybe…a diploma.

This battle is so much harder than I anticipated, in ways that I didn’t see coming. But I won’t let it take me, or the life I worked hard to build. I can’t. I’ve built a life that has everything I ever wanted, with an amazing husband, two awesome kids, a job I love. Before all the drugs I was at my ideal weight, I was active and happy. I will be active again. I will be happier. Lupus can not rob me of everything. There are ways around things. There always are. If that means I have to find the Erin way in other situations, I will. If that means swallowing my pride again, I will.

Yes. I’m getting my life back. New, improved, different.

Now to just convince everyone around me to join in on the fun.

I’d Like That Hollywood Ending Too

I almost wish I had cancer instead of Lupus.

It’s one of the many reasons my family is going to Washington DC in June. Because unlike Angelina Jolie I can’t make a brave decision (which I applaud wholeheartedly) and then simply have only scars and memories left to show my children.

I know it’s a terrible thing to say…to wish I had a disease that kills the people I love and that kills so many. But it also can be defeated. It can be prevented. It has billions in research and deserves billions more. And yes, there is a sick part of me that wishes I had to fight cancer and were given that fighting chance so I could kick its ass and then move on with my life, or lose my battle with dignity.

Instead I have a chronic illness. Like cancer it has no cure. Unlike cancer, it can not be defeated…it can only be ‘controlled.’

1.5 million Americans suffers as I do…and those are just the ones who are diagnosed. Because Lupus affects a majority of women of color there is tremendous fear that many go undiagnosed and go without medication to help them function.

Without the pills and shots I take daily, and the infusions I get bi-weekly, there is no way I could function. So in a way, you can add ‘double mastectomy’ to the list of things on my Angelina Jolie jealousy list. What I wouldn’t give to go through several surgeries to be rid of this fear and pain and ache and disorder. I’m jealous I had no choice in losing my colon, gall bladder, ovaries, uterus, cervix, or in the stroke I had thanks to Lupus. I’m jealous I can’t just have a surgery and a few rounds of chemo and radiation instead of my bi-weekly rounds and the constant fear of another organ in danger just around the corner.

I know it’s not fair to compare diseases. Or to play the ‘who has it worse’ game. I know, compared to so many, I would lose hands down. But I can’t help wishing I could knock the crap out of the ‘chronic’ part of auto-immune disorders and fight a brave fight and then move ON. Just let me win or lose already. Just let there be a finish line.

Lawmakers need to know Lupus isn’t like many of the illnesses people lobby for when they come to the Hill. Sure, we need research money like any other. However, what I want Congress and the Administration to know is our fight never ends. The children always are in fear of when Mommy will go back to the hospital. The story Angelina Jolie told of her partner, Brad Pitt, being by her side and there even being jokes…believe me, after hospital stay #50000000 you are lucky if your hand is held between arrangements being made on who will take the kids to school and what can be made for dinner between doses of hard-core drugs from the nurse.

Marriages have crumbled under the strain of Lupus. Children require therapy because they have to learn to incorporate ‘Mom is always sick’ into their everyday lives. So much so that I hesitate to turn on the news tomorrow morning, knowing Ms. Jolie will be on every station here in Los Angeles and it will inevitably lead to my kids asking ‘can’t they just cut the Lupus out of you, Mom?’

Riding lessons!

And I will have to hide in the shower, again, to cry. And I will explain, again, that no… no… they can’t just get rid of Mom’s Lupus but they can keep it under control and no, no, it can’t just be cut out, but maybe someday they will come up with a drug or a vaccine or even a cure.

If we are lucky, they will come up with a cure for Lupus and cancer, then maybe no more children will have to ask their Mommies about scars and partners will always laugh while we patients can finally rest, knowing the fight is over.

I think that is the sort of Hollywood happy ending we can all get behind.

Friday is Put on Purple for Lupus Day. Do me a favor and wear purple. And thank you to everyone who donated to help get us to DC. I’m happy to report we’ve purchased our plane tickets. We will do all we can to represent you proudly.

 

Lupus Awareness Month. You Want a KickOff Post? You Got One

Lupus awareness purple bow on my IV by wonder nurse @alina_khodad !!!!

It hits me at the oddest times. Not ever when there is an IV in my arm or when I’m talking to a therapist…but like, just now…when I see the photo of a beautiful newborn.

And this heaviness crushes my chest and my heart begins to pound a bit faster and I feel that ache.

That ache for all those things I wanted yesterday (read: NOW) that I must wait for. For all those things I will never have. For all those things that must change because life has dealt me a hand I’m not sure how to play.

I dream about secretly saving money to take the family away on a surprise cruise. And realize I have to schedule it around treatment and make sure it’s well after that one drug I get because that drug means I catch every germ on earth and I can’t be out in public and I have to make sure … you get the idea. And my dream fades.

I dream about going back to work after having an inspiration for a project as I finished reading up on some social media political ideas and begin to plan how to approach my boss and exactly who I would want on my team. And then I remember I need to be stable between treatments for a good length of time and stop getting all these infections and setbacks, even if they are small. I remember I’ll need to ramp up to balancing work and health and life while I currently have enough trouble just balancing health and life. And my dream fades.

I dream about my honeymoon over and over.

I dream about nights out with girlfriends where we dance and I need to take a cab home.

I dream about meeting my husband for dinner with friends across town. Or by the beach. Or with his co-workers. Such simple things he does all the time with many people.

I dream about running in the park with my children, laughing. I dream about volunteering in their classes.

And then I remember I shouldn’t be out in the sun long, due to the medication. I remember I can’t run, really. I remember the germs in the classes could land me hospitalized.

The ache returns. Harder. Stronger.

I want it so bad. I have been working so hard. I take my pills, I sit with that damn IV in my arm as they infuse whatever they infuse into me day after day, week after week, month after month. I try yoga. I try the diet that is supposed to help with the steroid weight gain. I barely eat now but I’m still a prednisone oompa loompa. I have done everything the doctor’s say and yes, I’m getting better but at what cost? I know there is light at the end of this tunnel, or so they tell me…but I still can’t see it because despite FEELING better there is too much still missing.

On the days I feel good I do all I can- I have gone back to school (online only as I can’t sit in a classroom yet), I drive carpool, I make dinner and breakfast and lunches and I do the best I can with housekeeping. I’ve been trying different things, doctor approved, to help my body and mind from horseback riding with my daughter to gentle yoga to just walking the dog.

I feel like I am trying so hard some days I’m creating stress by being so very determined. Mostly because I can’t stand to feel that ache. I don’t want to feel that ache. I want that ache to go the hell away and understand there is now a new normal around and this is just how it is going to be.

Only better. Because it will keep getting better. I have come this far and I will keep going. It’s slow. It’s painfully slow. But it is happening come hell or high water because it will get better than this. THIS is the new normal for now and it will continue to morph until I am happy with my life.

Yes, I have much for which to be grateful. And believe me, every single day I celebrate. Every. Single. Day. I am happy and laughing when I open a jar without pain. I have cried when I climbed the flight of stairs to our bedroom to realize I wasn’t out of breath. I’m patting myself on the back for every ‘A’ I get in class and for every treatment week I make it through without sleeping the entire time.

All I want is someone to hold my hand and tell me this is going to pay off.

This is life with Lupus.

 

Learn more about Lupus at Lupus.org