Weathering the Storm

This quote has really struck me recently.  “And once the storm is over, you won’t remember how you made it through, how you managed to survive. You won’t even be sure, whether the storm is really over. But one thing is certain. When you come out of the storm, you won’t be the same person who walked in. That’s what this storm’s all about.”

In my case the storm has two completely different meanings.  My body is under storm right now and nobody seems to know why or what’s the reason for my rapid decline.  I’ve gone from never using or needing an EpiPen in my life to having to use it 11 times since June.  I’ve added something like 12 new food allergies/reactions.  I see doctors, I get testing, but no one has any idea of what’s going. 

Eleven times my body has decided to shut-down to the point of me needing life-saving medication.  I know what it feels like to have your throat close to the point of having difficulty swallowing and communicating.  At times I’ve found myself an nonreligious person, terrified and praying to my dead grandmother as I’m not ready to go and I feel like I still have unfinished business here.  That in itself changes also changes person.    

I go from running doctor to doctor, hospital to hospital, one medical test to the next one, but truthfully speaking I’m exhausted, frustrated, and want to cry.  That’s not the kind of running I want to be doing.  Running became my thing and how I coped with lupus and then my CVID diagnosis.  That has currently been taken from me.  I keep on losing things that I love (loved).  

It hurts and I hate it.  I miss my favorite foods, I miss volunteering at my favorite places, I miss being able to go places without having to worry about latex exposure, I miss knowing a world without EpiPens and a laundry list of food restrictions, but most of all I miss running.  I miss that sense of freedom, I miss the sense of accomplishment, I miss having that time just for me and for me to test my limits and redefine what is possible. 

Then more recently, I had another kind of storm experience with my first real hurricane experience.  I was home alone dealing with Hurricane Matthew and I proved to myself that despite everything going on, I’m still resilient and can be self-sufficient.  I survived two days without power and with a very limited supply of food, but I did it.    

Good or bad, I know that I’m not the same person I was before these storms.  Some may say I’m more jaded by the medical system and how it continues to fail me.  Some may say I’m more resilient and continue to prove that I’m not one to give up with no matter what the world throws at me. 

I honestly don’t know how I’ve made it this far and am still doing this, but not doing it really isn’t an option.  I need to bunker down, find some cute (latex-free) rain apparel and learn to dance in this storm as it doesn’t seem like the storm that has become my health (or lack-of) is going anywhere soon.      

But I Understand....

I’ve heard this phrase more this past week than I’ve heard it in a very long time or maybe I’m just more sensitive to it. Last week I had cataract surgery which isn’t common in 25 yr olds at all. This is a side effect of one of my lupus medications. It’s one of the few medications that have helped me. Dr’s don’t like their patients to be on it long-term and I’ve been on it not quite 4 years.

We’ve tried getting my body off it, but then my inflammation markers sky rocketed and it causes all sorts of issues. I wish there was another medication we could try, but at this point there really isn’t. Every day I take this medication, every day I willingly accept these risks as the risks of not being on it are much worse.

For surgery, that was already a rough day for me as I didn’t want to be there doing this. Plus it was no food or drink after midnight and I somehow had the last appointment of the day. That royally messed up my medication schedule for that day. The waiting room had those harsh lights that trigger my lupus symptoms.

After waiting 30 minutes, I was getting antsy and the anesthesiologist called us in the conference room to tell us they’re running kind of behind but they’ll start pre-op “shortly.” I’m usually pretty good at keeping myself together, but at that point I just lost it and started crying.

The anesthesiologist was maybe trying to comfort me and said but I understand….All these people in the waiting room are in the same situation you are. All of them were at least 2 times my age and lots more like 3 times my age. That was not what I wanted or needed to hear at that moment.

I said to her are all of these people 25 years old with 2 potentially life threatening illnesses too? Do they all have Sjogren’s Syndrome, Celiac Disease, Lupus, autoimmune thyroiditis, and an immune deficiency? Are they here because of a side effect of a medication they needed to stay alive?

She said oh honey I understand, you’ve been given a rough hand. I responded with have you been forced into a medically induced retirement at 25? Yeah didn’t think so, so how could you possibly understand…

I have to admit this wasn’t my finest moment and anyone who overheard this conversation probably thought I was some kind of monster. The truth of the matter is I’m only human and doing my best to keep myself together.

They have no idea what I go through on a daily basis. They aren’t the ones who get I don’t knows when they see specialists. They aren’t the ones taking handful of medications every day. They aren’t the one trying their best to live life despite their crappy situation. They aren’t the ones who recently had to donate the vast majority of their clothing as it contains latex in some form or another.

If my doctors and medical science, doesn’t understand, if my family doesn’t understand and if even I the one who lives with this daily doesn’t understand, how can she possibly "understand?" Every day I don’t understand why this happens, why my body is so dysfunctional, how one person can be so sick and how those that are healthy just waste the gift that is their health

I wish their were answers to these questions and that she could truly understand what it's like to walk a quarter-mile in my shoes. Doubt many others could do it, but then only then could she say she even kind-of understands. .

The "Cost" of Staying Alive

This has been something that has been on my mind a lot recently as I learned I need cataract surgery. Cataract surgery in 25 year olds is not a thing that typically happens and it wasn’t what I was expecting at all when I saw my eye dr last week. Cataracts can be a side effect of one of my lupus medications (prednisone i.e. steroids). So here we are having to make decisions and have surgery that will probably result me needing glasses for the rest of my life.

I know glasses aren’t the end of the world, but it’s just another thing to add to the ever growing list. I have steroid induced cushing’s syndrome, I’ve gained an insane amount of weight, my skin is always breaking out, I bruise much more easily, and mood swings among other things. These are just the side effects from my one medication, but this is the same medication that has allowed me to finish half marathons, travel the world, work a dream job, volunteer with chronically sick children and kind of live a life for the past 4ish years.

Is it “worth it?” At one point does the side effects and negatives of a medication outweigh the benefits? I mean I’m still here and still fighting so I guess at least for these moments it’s still worth it. That isn’t even including the side effects of my other medications.

My dr has increased my dosage of my one med hoping to decrease dosage of my steroids and this med is causing hair thinning and may cause cancer. Every morning when I take my pills I knowingly accept these risks as I know the risk of not taking it is much worse.

My favorite is that some have the side effect of death. So here I am fighting illnesses that can kill me or taking pills to fight these illnesses that can kill me. It seems like lose if we do, lose if we don’t situation. And truthfully all of this sucks and isn’t decisions anyone should EVER have to make. Better, less toxic treatment options are needed. A cure would be lovely, but we’ll start with better treatment options.

No matter how much I hate this, hate these side effects, hate what these medications have done to my body, I’m still alive, still running, still trying to take on the world, and know that I still have a lot of fight left in me. I can use this fight to share my story, spread awareness and raise much needed funds for research.

This morning I was able to get in a much needed run and it was the perfect chance to clear my mind. Running is so cathartic and it gave me a much needed break from all the thinking and difficult decisions I’ve had to make recently. During my run, I was able to enjoy this beautiful day, the little things and revel in fact that despite all of this my body is still doing this.

Thankfully I have a 5k this weekend and Star Wars Dark Side Challenge 2 weeks after that. Lots of exciting non-medical things to look forward to plus more medals to add to my ever-growing collection!

Bravery is...

Princess Half 2016 I went with a Merida inspired outfit. I didn’t used to be a Merida girl, but I’ve been all about celebrating bravery these days. My body keeps on pushing my well past my limits and I can’t count the times I’ve wanted to give up, but instead I keep moving forward.

I’m finding bravery in the strangest of places like on the 2 hour drive to the hospital to see a specialist, in my 4th trip to the pharmacy that week, in the waiting room of my doctor’s office, and in now having to use 8 needles on infusion days instead of the 4 I used to use.

I face my fears and through the tears, I’m not letting these illnesses win. Some days I may feel like they’re winning then I look back at all I’ve done, all I’ve overcome and realize that I can keep doing this. Just like Princess Half 2016 was the first ever year for Team No Lupus which wouldn’t have been created if it wasn’t for my persistence.

I helped them and showed them the ways and wouldn’t let this go. Eventually they relented and Team No Lupus was created! We may have been a small group, but we were a mighty group. I can’t believe we’ve raised over $5,000. I love that this is something we can continue in the future and it’s not just going to end when Princess half ended.

Princess half once again stole my heart and I will keep doing this race. It’s the perfect opportunity to celebrate bravery and courage. Plus I have to hope for another PR next year! This year I was 46 minutes faster than last year so who knows what next year will have in store.

Two weeks later I did a 10k and had another PR. After that race I had my first ever allergic reaction to kiwi. Following that I’ve learned I have a latex allergy and need to avoid kiwi and bananas as well. I also need to carry an EpiPen as if my first reaction wasn’t scary enough, my next reaction could be much more severe.

Never a dull moment and my body keeps on throwing challenges at me. I dig deep to find that bravery and say challenge accepted.

Bracing for Impact

For 7 months I lived my dreams, I returned to Florida to do what I love.  I made new friends and got to volunteer at my favorite place in the world.  I conquered more half marathons and other distance runs.  I went to places on my bucket list and made my first ever trip to Disneyland and Hawaii.  Of course it wasn’t all rainbows and butterflies and I still was battling recurrent infections and lupus issues.  There were days where I was absolutely miserable and so done with my FL life, but overall the positives greatly outweighed the negatives. 

Then the lupus issues continued to get worse and soon it became things I could no longer avoid.  My photosensitivity started to include light bulbs making me sick and causing fevers and rashes and general feeling of sickness.  The pain levels skyrocketed and we ended up playing the increase the steroid game again.  My raynaud’s phenomenon issues also got much worse too.  Of course there’s other issues, but those are the big ones that stick out right now.

This made me once again make the difficult decision that my FL dreams had to come to an end.  My lupus dr told me my body needed a break and I couldn’t even argue with him.  There’s not much we can do for lupus as chemo really isn’t an option until I have kidney disease and for now my kidneys are doing okay.  It’s so hard feeling like your back is up against the wall and realizing there’s not much you can do.  That once again due to issues outside of your control, you’re faced to relegate to life as a professional sick person.

I’ve been in this situation before and I knew what was coming.  I knew the emotions and struggles waiting for me once I returned home.  I made a plan and thought that would make things easier.  I had time to have a final day at work, a final week of adventures and a chance to pack my apt.

None of this made it easier and if anything it made it even harder.  I knew I was about to hit rock bottom, break and shatter into a million tiny pieces.  I knew I was going to be left trying to find hope in a situation that is seemingly hopeless.  I knew that once again I’m going to be clinging onto super glue trying to glue my life or some semblance of a life back together.     

In a week, I’ve lost the life I built for myself, my job, my apartment, my independence and living near my friends and those friends that have become like family.  I’ve done my best to prepare myself as once again I journey full time into the world of specialists not agreeing and trying to pick what is the right course of action and treatment for me.

Nothing can actually prepare you for the emotional fallout or the darkness of the days I’ll have in store.  I am full of guilt and feelings of inadequacy.  This isn’t fair for me neither is it fair that I by nature of my glitchy body put others through this.       

Life is going to get a million times harder before it gets better.  I hope that there are brighter days up ahead, but I’ve also accepted there’s going to be lots of darkness.  I’m just doing my best to prepare myself and my body for this impact and I also know that it won’t be enough. 

Thankfully I have some old standby friends and some new amazing ones that have let me know I’m not alone and they will stand by me.  I know I’m so lucky to have these people and that they’ll break out the super glue and maybe some hard cider and somehow, someway we'll get through this together.

A Whole New World

And this time I wish I was talking about the song from Aladdin. I officially got to add Common Variable Immune Deficiency to my list of diagnoses on December 29th, 2014. In a way, at first I was relieved. I had validation that something was wrong and that there was a medication I could start to help try and fix the issues. My dr told me the specialty pharmacy would take care of everything and I wouldn’t have to worry about a thing. Little did I know that would be wrong on so many levels…

I was forced to enter this world of bureaucracy and nonsense that is the healthcare system. I spent hours a day on the phone fighting and advocating for myself so I could get the medication my body so desperately needed. Nobody seemed to care and everyone I talked to told me a different answer. At this point, I also relocated leaving all my beloved specialists behind.

I was living in an area with no doctors, no care team and I functionally hit rock bottom. Everything was a fight and I had to establish care with a whole new set of doctors. New doctors mean new and more testing and more questioning things. Still a few more doctors to establish care with, but I’m getting there. Some I really like and some have me longing for the specialists back in PA.

And this was probably one of the worst parts, but I had to cancel my much anticipated trip to northern Europe. My one specialist said it’s just not safe for me to be leaving the country given my lab values. Another one said I’m one infection away from pneumonia and a trip to the ICU. I was devastated and cried and I blamed myself. It’s my body and my stupid illnesses to why I can’t go on a trip I’ve dreamed about for so long.

I talked to people that were diagnosed and have this illness and they told me I was doing “everything right” yet I’ve never felt more lost, alone, or confused. I hated CVID and I wanted to send the diagnosis back. Back to the diagnosis factory, back to who knows where, I just didn’t want any part of it. When you get diagnosed with a new illness and especially a chronic one, it’s like you have to go through stages of grief. You grieve the life you used to know and a life before all of this. And yet through the brokenness and the scattered pieces that my life had become, I managed to find the strength to pick up the pieces and keep fighting.

Thanks to my persistence, I was finally able to start my new medication a week and a half ago. Every two weeks I get to give myself a cross between an I.V. and a shot in my stomach for 2 hours. This will become my new normal and a whole new world before November, I never thought I’d have a part of. Things are looking up as my medication was transferred to a new specialty pharmacy that seems like they are on top of things and they will fight for me.

And as a "consolation prize" for having to cancel Europe, I’m going to Disneyland and Hawaii in September! My lab values should be better then and it's just safer staying in Murica. Not necessarily the trip I dreamed of, but both are places I’ve never been before. I’ve signed up for another race well technically two. I’m going to conquer the Dumbo Double Dare Challenge (10k one day and half the next) with one of my best friends from college.

This new life might not be what I hoped for, but it doesn’t mean this whole new world is going to be horrible either. I’m still trying to find and believe that there is good in this world because that’s who I am and no amount of bureaucracy or illnesses can take that from me.

Becoming an Activist

Inspiration can and has come from the most unlikely of places.  My latest inspiration has come from of all places the airport and the plane ride “home.”  These days especially during cold and flu season, traveling stresses me out.  Every time I hear somebody cough, I freak out and part of me wants to go into panic mode.  Germs are all around us and I’m kind of REALLY immunocompromised. 

My good immune system first of all isn’t as strong as it should be so it can’t fight off things like it should instead of attacking the “bad things,” it just attacks my body causing all this autoimmune disease fun.   Maybe for Christmas I’ll get my immune system some directions or maybe even a GPS so it stops getting lost and attacking the wrong things?!  I’ll have to work on that… 

I know that I’m supposed to wear a mask, especially in airports yet it makes me feel kind of uncomfortable and self-conscious.  I mean yes the mask isn’t the most comfortable thing in the world, but it’s more that doing that is a physical sign that something is wrong with my body.  One of the best things yet one of the worst things about lupus or my newest diseases are that “I don’t look sick.” 

If you saw me traveling yesterday, I would have looked like any other weary traveler.  I like that as long as I can conceal and try not to feel, I can “pretend” to be normal and healthy.  Unless you saw what was in that perfectly pink and flowery luggage I was wheeling behind me (suitcase completely full of meds and medical equipment) or that I obsessively wiped down everything with Lysol wipes or me using hand sanitizer like a champion or when I put my face mask on, that one would realize ohhhh there might be more than meets the eye…

The other things can pass for just anyone else with maybe some germaphobe tendencies.  The face mask might as well be a flashing neon light saying HEY YOU LOOK AND OBNOXIOUSLY STARE AT ME.  I’ve had some of the most interesting encounters while wearing my super awesome mask (it has colorful flip-flops on it).  Typically they look at you like you’re carrying swine flu plus MRSA plus pneumonia and for good measure you’re also trying to bring the plague back.  Well actually sir or madam I have an immunodeficiency and this is to protect myself from idiots like yourself who along with your children coughing everywhere are driving the germ express.  Infections can make me really sick really quickly and I’d rather not spend Christmas in the hospital. 

But last night as people were getting off our plane, I had the most magical encounter with a family.  There was this cutest little girl who was getting home from her Make a Wish trip.  I’m guessing this child has had an organ transplant because her parents had on t-shirts about the importance of donating life.  Anyways her mom said to her, look at her wearing her mask like she should be.  What a good role-model for you.  This little girl was so stubborn and hated wearing her mask too.  But she saw me, “a big kid” wearing the mask and seemingly okay with it and I think something clicked inside that little girl. 

Such a brief encounter, but that moment something clicked inside me too.  I’m sitting there in a mask and I realize for goodness sake, I can’t be embarrassed or ashamed or insert word here because I have to wear this thing for my own health and well-being.  I know I’m a feisty and stubborn individual and I realized that I’m being ridiculous.  I need to take a stand.  I could either slink over in my seat embarrassed by my situation or I could proudly rock a mask like nobody has rocked a mask before...

Those that are closet to me probably already know which option I’m going to choose.  I rocked that mask through the rest of my airport experience.  I am going to become a voice and a face of lupus and sjogrens and celiac and CVID.  Well maybe I can’t tackle them all at once, but I’m going to do what I can.

I want to use my story to raise much needed funds for research so better treatment options can be found.  I know I already spread a little sparkle and glitter everywhere I go, but I also need to be spreading awareness too.  I’m dreaming big and I want to become a voice on Capitol Hill.  I want to educate our law makers about the harsh realities of lupus life and encourage them to support lupus research.  I want to share my stories in a perfectly purple ball gown at lupus galas and fundraisers.

I already have some fantastic ideas for how I’m going to spread awareness when I totally rock the Princess Half in February.  I also have some other pretty awesome special projects in the works.  This is just the beginning and the sky’s the limit.  I went to bed and woke-up feeling ridiculously happy and ready to take on the world.  When I’m determined, nothing will get in my way and anything is possible.  All I can say is I hope the world is ready for me because I’m certainly ready to take it on.