Category: Chronic Illness

Chronic Illness, Wellness

We Have A Voice!

by KatSnead2 Comments on We Have A Voice!

Ready. Set. SNOW!!

I was asked to fly out to Washington, DC this past week to be present for the National Psoriasis Foundation’s (NPF) Annual Capitol Hill Day. This is an annual event that NPF hosts to give us patients the opportunity to voice our experience and hope for Congress’ support for research funding and medication/treatment advancements. WHAT AN OPPORTUNITY?!!!

I was all set to go and pulling up to SFO International when I received a notification that my flight was canceled due to crazy amounts of snow landing the same time I was scheduled to land! Bummer! Nevertheless, my voice will not be muted. I’d like to share my story with you. The story that I was going to share in Congressman Mark DeSaulnier’s office.

HELP IMPROVE LIFE FOR PATIENTS WITH PSA

I have Psoriatic Disease. I was only diagnosed in 2012 but after knowing much more about the disease and its symptoms today, I believe that I have had it (visible at least) since around 2008. Sadly, even going to my annual physical check-ups and whatnot, the typical diagnosis would be a rash or allergic reaction to something.

I was an active individual. I was a CrossFit competitor, I was a Junior Pro-Am ballroom dancer, I was a Hawaiian and Tahitian dancer, I was a runner, I was a skier, I was a dental hygienist. Then after being diagnosed with Psoriasis, I was unable to walk especially unable to run, I was unable to dance, I was unable to keep my balance, I was unable to hold my instruments, I was “contagious”, I was always “sick”. Untreated, my Psoriasis advanced rapidly and I was diagnosed with Psoriatic Arthritis only within months of my initial diagnosis. It was hard when I myself didn’t understand the disease, but it made it almost impossible to be out in the world with visible markings all over me and the inability to function without pain when others were not aware of what Psoriasis really was. Even with the commercials that came out early on, Psoriasis was either: a “rash” or “arthritis”. In some ways, we (patients) didn’t want the disease to be serious enough for others to be afraid of us, but yes serious enough for the medical world to treat us with a sense of urgency.

Even with the latest and greatest medical updates about Psoriatic Disease, there are just so many unknowns.     

Funding these appropriations asks* for psoriatic disease research along with the PATA* bill will put us in a position to truly be able to target better diagnosis and valuable treatment options; allowing patients to be able to afford better treatments and live fuller (almost close to normal or consistent new normal) lives.

People always ask me why I am so involved since I “look so normal”. And yes, today I have learned how to cope with my disease, I have learned to smile through the pain so that others can know that they can also, I have learned and practice holistic methods that can allow for better mobility, I have learned to dress so that I can appear fine with my body. BUT to be very candid .. even though there are many experiences to hurt from .. there was one instance that will have forever changed me. There was this one time that my friends and family were out swimming and as I lowered myself gingerly into the hot tub, two individuals already seated in the tub stared at my scars and were so disgusted or afraid that they cringed and quickly jumped out to avoid the water that I had just contaminated. So my answer to why I am an advocate: it’s SO OTHERS WITH PSORIATIC DISEASE DON’T HAVE TO EVER FEEL THAT HUMILIATING HURT ADDED TO THEIR PHYSICAL PAIN. Educating the patients and the ignorant. Nurturing empathy and not feeding into sympathy. Encouraging action, not isolation.

I guarantee you that someone very close to you has a form of Psoriatic Disease. That’s how prevalent it is especially at this time. Either, they don’t know that they have it yet or they have been misdiagnosed. This disease is debilitating. It is life HALTering (yes, it stops regular life in its tracks). All we are asking for is an opportunity to have the information and options right there at the very beginning of hopefully an immediate diagnosis so that we can stop IT in its tracks. And that is what this ask will give us.

I always use this analogy: When someone you deeply care about finds out that they have cancer, I’m sure that one often says “Oh, so happy that you caught it early!! Now you can start “this type” of treatment and beat it”. We don’t have the ability for early detection, we don’t have a specific roadmap for treatment, we don’t have a one size fits most type of medication because we need more research to be done, we need more funding for our researchers, we need your support, we really need your signature today.

Thank you for taking the time to listen to my one story out of about 8 million of us here in the United States alone which have many stories like this to tell. – Kat Mulingtapang, Capitol Hill Day 2017

I wanted to share this in hopes that it would encourage you to stand up for YOU! Regardless of the platform, know that you have a voice.

* Here is a link to a recap of the 2016 Fly-In day. It gives us a detailed explanation of the congressional asks that we were supporting last year as well as this year  NPF Capitol Hill Day

 

Chronic Illness, Wellness

Where Has The Time Gone

by KatSneadLeave a Comment on Where Has The Time Gone

I can’t believe that its almost been a year since I last posted on the site. Don’t let my absence fool you, though! It has been a ridiculously busy 2016 thus far .. and it has been quite a journey to just try and get “through it”.

In the madness of it all, it just happens to get done. Thank God. Endurance, I suppose, is key. Although, I feel like I’ve lost so much time just being sick, unable to move, becoming unmotivated to even think. I was so upset that I was going through it. Things felt like they were just filling up space on my calendar, but didn’t really serve a purpose.

These days, Praise God, my Psoriatic Disease has kept itself at bay and I’m the most mobile I’ve been in several years. Yet the FREEDOM of being able to “just live” it out has been bittersweet. I’m happy that I have been “cured”, but I also feel as if I’m playing catch-up to all of my dreams and desires that I had to set aside since I had been diagnosed. I feel as if I have to accomplish so much in such a little amount of time, just in case Psoriasis wants to return to my body. I always feel the pressure of time ticking away as if I’m close to not being able to move again. I have to admit though .. I thrive under pressure. I want so much to complain and make excuses about the “time lost” due to chronic illness, but I find myself so grateful these days for the experience.

Who would have thought:

  •  .. that the times I was laid up in bed, unable to move .. that I would have the time to stop and plan things out properly  according to what I am supposed to accomplish;
  • .. that the times that I was in pain .. that I would know it so well so that I can understand and help others through their own pain at some point in the near future;
  • .. that the times I had allowed my mind to wander into sadness and talk myself out of my dreams .. that it would be that very same feeling that I would use as a foundation to build my heart-empire off of;

It’s so crazy that the time that I hated the most would become the moments which I now cherish .. because of what it has made me. Now .. I’m onto the next phase of this crazy journey – picking up where I left off, so to say.

I love to compartmentalize things .. so it’s fitting that all of the people, feelings, and “things” in my life have its appropriate place to “live”. Well, as you know .. my life/work has a lot to do with: Coffee.  So this is a perfect example of it:

cups

Imagine that the 1st row of cups represents my Church, my Family, and my Friends. Then the 2nd row represents my Businesses, my Work, and my Volunteer Organizations; and so on and so on. Well, of course, each cup or each facet of my life has many components (represented of course, by the many beans – hahahaha … sorry amused myself for a moment).

Well, the time that I had to myself .. I often thought about what my particular share is of this life. Like, what did I have to contribute to all of these components in my life? What did I have to offer? What role do I play in the bigger picture?

Then .. as I allowed myself to endure the pain (or the lesson), to feel the rest instead of the restraint, and to be ok with the blessing (not be ashamed of the condition) .. I realized that I didn’t have to (simply put) figure out which bean I was in multiple cups, but …

heart-latte-art

simply … to just fill each cup with everything I’ve got.

To my chronic illness brothers and sisters, keep going. I respect you, your journey, and your fight.

~ Be Well …

Chronic Illness, Uncategorized, Wellness

Cleaning House!

by KatSnead4 Comments on Cleaning House!

Ahh Sunday. Prep day… Rest day… Game day… whatever it is for you, Enjoy It! For me, Sundays are my kick-it-into-gear day: this is where I meal prep, schedule prep, meeting prep, & self-prep. I truly go through my entire house, refrigerator, and “chakra house” to prepare myself for the week.

I wasn’t always like this though. I spent a good majority of my life living hour to hour. I was very much a reactive person rather than a prepared person. I got so good at it, that I prepared for the unknowns. But this wasn’t so great because that just meant that I was spending the entire day waiting for something to blow up in my face. Now, since we cannot plan every moment of our lives, we can at least try to take control of those scattered moments. This was something that I really needed to get a handle on since stress was a major episode in my everyday life that exacerbated my psoriatic reactions.

For me, being in a clean environment is critical. Not only am I allergic to dust and grime, but clutter truly restrains me. It hinders my mental and physical productivity. I simply become too overwhelmed with EVERYTHING in front of me that I can’t take the 1st step to “just cleaning up”. So I have started making sure that everything has a “place to live”. This goes for everything in my life:

  • My ironing board lives in the laundry closet;
  • My jewelry lives in the jewelry box;
  • My shoes live on the shoe rack;
  • My bad thoughts live only for a moment then go onto my notepad and stays only there;
  • My pain lives in my knees;
  • And so on …

I say it so often that my soon to be stepdaughter has started telling her dad to put his shoes where they live once he gets home! HaHaHa! Yes, that does make me happy.

I deserve at least one glass .. right?!
I deserve at least one glass .. right?!

Same goes for my eating. Since I am the reigning Iron Chef Champion (well … in my kitchen anyways) I have to not only eat well, but eat clean. If you have psoriatic arthritis, you know that doing this for every meal and every day is almost impossible. Living with chronic illness really makes you a “preparer” (if that’s a real word even?!). You always have to be prepared to be debilitated completely. So I figure that if God-willing, I am ok on Sunday’s then I can prepare all of the components of my meals that day. This makes for a quick and effortless way to cook during the week. So I have to go through my fridge and the pantry, sort through all of the ingredients, and plan away. Actually, I have some really cool recipes to share with y’all this week. I have to start my detox/elimination diet TOMORROW (the dreaded Monday) so I have had to plan out some key meals to ensure success.

On a deeper level, I have gone to extreme measures to plan out my schedule which really helps me emotionally.

My organized chaos of a schedule
My organized chaos of a schedule

Ahhhh Yeah .. that’s my schedule… oooon an Excel spreadsheet…  aaaand yes, it’s planned out for the year. I know it’s a bit intense, but it truly does keep my mind free of clutter and has reduced my anxiety tremendously. The set up was a little overwhelming, but nothing a cut and paste function couldn’t fix. I highly recommend keeping a calendar for yourself. Include yoga sessions, meditation sessions, and meal prep times. Allow yourself to see what a snapshot of your life looks like (on paper). Visualize yourself keeping this schedule. Obviously, you don’t HAVE to create an Excel spreadsheet, but I find it important to jot things down. I feel that in doing this, you can free your thoughts and let your mind rest in knowing that you can let go (mentally).

So get to it! Clean up your space; clean out your fridge; and clean up your schedule. Do these things so that you have the clarity to emotionally enjoy your life and your surroundings more freely.

Chronic Illness, Wellness

Disappointed …

by KatSnead4 Comments on Disappointed …
Disappointed …

Do you remember when you were a little kid and your mom said, “Ok, get your shoes on. We’re gonna get some ice cream”! OH WOWZERS!!!! How exciting right?! Then, the phone rings and 25 minutes later, you’re stuck sitting there with your shoes on .. just waiting. Then finally, a glance of hope! She covers the phone then whispers, “Sorry, Love. Maybe tomorrow”. Gesturing that she’s stuck on this stupid call.

Yep. That’s where I am right about now: Wanting to throw the phone across the room.   

I just received a phone call informing me that I needed to reschedule my doctor’s appointment. I know. Usually, people would be ecstatic to cancel that right?! No. Not when you have been waiting to see this Dr. for DAYYYYYYYSSSSSSS and now you are only 2 hours out.

Living with Psoriatic Disease leaves a ton of unknowns on your chart. I have been getting sick more often than not and my pain happens to be more and more unbearable. I NEED to know what’s happening to me. It is so unsettling not knowing how I am going to wake up tomorrow. Before, I would tell myself, “just get through today” & then find comfort in knowing that I was able to do it. Now .. I have to not only make myself sleep .. but also have anxiety about what tomorrow will feel like. Like:

  • Will it hurt when I wake up?
  • Will I be able to move?
  • Will I have a fever?
  • What’s next? …..

I’m disappointed because .. I simply have no idea. Ironically, the phone ringing that messed up my ice cream date years ago is now the sound I am longing to hear.

Chronic Illness

Immunocompromised?!

by KatSnead9 Comments on Immunocompromised?!
Immunocompromised?!

Ugh .. today has been a rough one. I worked myself apparently to my new “max” yesterday and today I am paying for it with a 101.7 fever, the shakes, and loss of appetite. Let me just bring you back to who I was way back when so that we can (together) have a clearer picture of this drastic change.

One of my 1st grown up jobs, I was with for almost 9 years. In those 9 years, I must have called in sick about 3 times. And mind you, I only called in sick those times because my boss had previously sent me home every time I had attempted to come in. I was never the sickly one. It would be impossible for me to “get what he has” if anything was going around work. Apparently, that is no longer the case. Actually I still remember when my doctor had asked me if I wanted him to give me documentation advising that I am immunocompromised. Like what in the heck is that?!?! I barely knew how to spell that, let alone want to carry around a piece of paper saying such.

immuno

I swear the only time it was cool to be “immunocompromised” was when this older gentleman seated next to me on my flight to Guatemala was coughing up a storm and the only seat available for me to switch to was in 1st class. Hahaha, that was actually pretty great!

But today .. my immunodeficiency is not so great. I was probably around someone with a runny nose and now here I am, useless in bed.

It still baffles me that a “skin rash” diagnosis like Psoriasis has changed so much of me. My resilience against becoming sick has lessened, but my resilience within to have a beautiful life has strengthened leaps and bounds. My skin seems to have weakened because of the scratching and the sores, but I have become thick-skinned against the stares and the comments made about my appearance. My voice has often cracked or has been muted by being sick and the soreness  in my throat, but I have been more VOCAL about my pain, my struggle, my overcoming, my beautiful life.

Psoriatic Disease truly changes you .. it’s your heart though that determines how you can adapt to that change.

Chronic Illness, Wellness

I Wanna Dance ..

by KatSnead7 Comments on I Wanna Dance ..
I Wanna Dance ..

Yesterday I felt like dancing for 10 hours straight. You know not too long ago I was a Tahitian and Hula dancer, I competed and taught Latin Ballroom, I created choreography for dozens of Traditional Filipino Cotillions, I was a #CrossFit & Yoga Monster (jumping from Bosu to Bosu and onto 3.5 feet tall tractor tires) … but today, I am in pain.

I worked so hard to be in the best shape of my life. Then one day I wake up with half of my body covered in what I thought at the time was #Hives. I was so confused. I had no idea what I had done the day before to cause me to break out in this rash. Since it wasn’t causing me any discomfort, I went into self-remedy-mode: Warm salt rinse, Collagen pads, Aloe; and any type of topicals that I could get my hands on. This rash “persisted” for about a week and half when I decided to detox. I ate clean, no alcohol or caffeine of any kind, zero sweets, all that good stuff. I thought for sure that it may have been “something I ate” so there. This should make it go away right?! No, I actually developed a larger patch on my shins.

Once this “rash” was visible for all to see was when I went to my doctor. She then referred me to a dermatologist who told me that it could be either #Eczema or #Psoriasis. He gave me some topical ointments to rub on and called it a day. When it wasn’t getting better I sought out a dermatologist who specialized in Eczema and/or Psoriasis and that’s when I was officially diagnosed with Psoriasis. Only 6 months later was I diagnosed with #PsA or #PsoriaticArthritis and my life has been forever changed.

Today, I walk for me. I walk in hopes that maybe one day soon I can have my life back. I don’t regret this part of my life .. this struggle .. for it has reminded me of the strength and resilience within .. but I long to glide across the floor again as if I were flying, to dance without a time limit, to move without pain.

Today, I raise money for the #medical research that I believe in, for the work that is being funded now so that I can still have an active future, for the answers that all have longed for.

Today, I will participate in every event, in every walk, in every conference so that I can make a difference in some way.

Please support my #DREAM of a life free of psoriasis and psoriatic arthritis by making a donation today.

All money raised by #TeamNPFsf Walk provides people with psoriatic disease the services they need to live well, while funding research for a cure. Thank you so much for your support of this project that is sooooo important to me. Join me! We can do together what I simply cannot do alone.

http://npf.donordrive.com/index.cfm?fuseaction=donorDrive.team&teamID=5819