Monday, July 28, 2014

Caregiver Fab Five

“I love you without knowing how, or when, or from where. I love you simply, without problems or pride: I love you in this way because I do not know any other way of loving but this, in which there is no I or you, so intimate that your hand upon my chest is my hand, so intimate that when I fall asleep your eyes close.”
― Pablo Neruda

Wow, it's been almost one whole month since I wrote! My apologies! But you know, life, laziness, procrastination and pain usually get in the way of me doing the things I say I'm going to do. But alas, here I am. I have returned to share with you the last of the Scleroderma Awareness series blog posts and memes. (Better late than never!)


Today's final post in this series is inspired by my hubs Lupe Mendez. Without whom, I'd probably be hooked up to machines being fed through a tube on oxygen in some dingy county hospital by now. He is my rock. My strength. My everything. (While I do have a great support system overall with wonderful parents, friends and family, he is with me on an everyday basis as patient and kind as ever) So, it is only fitting that I acknowledge him...but even more so, I am giving him space in my blog (he knows how selfish I am so this is a BIG deal) to share HIS side of this experience. 

I asked Lupe the other day to please share what 5 things he thinks all caregivers/spouses should know or remember when loving and living with a person with chronic illness. So here they are: (His words, not mine)

1. Be Mad: It's ok to be mad at your spouse/loved one every once in awhile. Sometimes they can be a pain in the ass and while you understand that they are ill or in pain, that doesn't give them the right to treat you like crap. So, be mad and share how you feel. You are allowed to feel frustrated and angry too. Accept it, share it, and move on. 
Example: 
I (Jasminne) am a pain in the ass at least once a day. Usually involving what to eat for breakfast/lunch/dinner
Lupe quite simply tells me: You are a pain in the ass. Now, what do you want for dinner?

4 Year Anniversary Dinner
2. Laugh:  Always remember to keep the humor in the relationship. Laugh at yourself, at her/him, at the stupid disease at everything! Make fun of each other (in good fun), of the disabilities, of the pain, of the pills, it's the only way to get through the darkest times. 

Example conversation this morning:
(Lupe did something to make me "angry")
Jasminne: I'm going to cut you! Stop it!
Lupe: You can't even hold a knife. 
Jasminne: I hate you. So rude. (And we laughed) 
We make jokes about everything, even things that shouldn't be funny, but it helps us deal and reminds us that everything will be ok. 

Lupe @ a poetry reading
3. Have Goals: Have your own goals as a caregiver. Your spouse/partner/loved one WILL take a lot of energy and focus in the relationship. But you MUST have your own goals, hopes and dreams for the future. You have to put yourself first sometimes too. If everyone's goal is just make the chronically ill person healthy or better it will drive everyone mad and you will not be the best YOU can be for that person. Remember (especially if you are the spouse), your wife/husband fell in love with you, don't lose yourself in the process of caring for the one you love. Take up hobbies that you strive to get better at, reach for professional goals, go back to school, have projects around the house, get healthier, whatever it is, give yourself the time, space and energy YOU deserve. 

Example: Lupe applied for and got into an MFA creative writing program- after I- Jasminne- pushed him into it because I saw how unhappy he was with his career and life in general....as frustrated as I get with his crazy school schedule, I know in the long run this is will make him happy and if he's happier, so am I, and if I'm happier I'm less likely to get sick! So it all works out!

4. Give Space: Give your chronically ill spouse/partner/loved one space to deal with his/her emotions. Even if you want to be there and shower them with love and comfort, sometimes they do just want and need to be alone. And that's ok. Try to not take it personally. They have a lot to deal with and many emotions to process. If they are anything like Jasminne, they will come to you and talk it out when they are ready. 
Just Because Flowers
Example:
Whenever Jasminne goes to see the doc alone and gets bad news or no news, she comes home in silence. As much as I want to ask her a million questions and try to find out what we need to do next and how she's feeling, I know that she is still processing the information and trying to understand her own emotions about what she's just learned/heard. So, I(Lupe) will try to have dinner ready, or offer a back rub or pick up her favorite dessert. It doesn't always put her in a better mood, but I know that she'll appreciate it when she's ready, and she'll open up about it when she's ready. 

5. Be Proactive/Advocate: Sometimes your spouse/partner/loved one will be stubborn. They will not want to take their meds, see the doc, go to the ER or eat the way he/she should. That is when you put your gentle bedside manner aside and you strongly encourage/force them to do as you say. Yes, taking pills everyday is not easy, but you know that it is for his/her benefit. I'm not saying force feed them their pills/meds but use the power of persuasion to do so. This especially applies to those moments when you KNOW you need to get in the car and go to the ER IMMEDIATELY and they are still wavering and saying things like: "I feel fine...I'll be ok...Just give me some (insert pain pill here) and I'll be alright...No, I swear it's just heart burn/stomach ache/headache..." 
With someone who is chronically ill it is rarely EVER "JUST" something...better to be safe than sorry. They may know their body, but it is up to you to advocate for them and be proactive. 

Example:
Summer of 2012, Jasminne kept complaining of pain in her side. Insisted it was just slight back pain probably due to heart burn or sleeping wrong. I insisted she tell her doc about the pain. She said it wasn't a big deal. Two days later, we were in the ER and docs were ready to drain 800ccs of fluid from around her heart. She was in shock at how serious her situation was. In that moment, we both became proactive and advocated for her. I insisted that they find her rheumatologist before conducting any procedures and we were able to keep her from undergoing minor heart surgery. BUT had she listened to me earlier.....*sigh...I digress. 
At the Lupus walk

So..those are Lupe's Fab Five tips/things to remember. For those that are caregivers/spouses what do you think? He is right?

For those that are ill, are these things you agree with? What does YOUR spouse/partner do that make a difference?


Sunday, June 29, 2014

The Girl Who Cried Sclero...

I am sure there is a general consensus amongst my friends and family that I just need to shut up already. I mean "we get it, you're sick...Stop beating a dead horse!" And I can respect that feeling, but in reality, this "horse"(aka scleroderma) isn't dead. It lives inside me, threatening to break me down and pull me apart from the seams on a daily basis.

So...no...I won't shut up about it. Not until there is more awareness. Not until the word scleroderma is as common as the word cancer. Hopefully it won't take an epidemic to make it that way, and that's why I do what I do, so patients can be diagnosed early, get better treatment, and live better lives.


So, with today being World Scleroderma Awareness Day and with all the work that has been done to spread awareness, I wanted to highlight some of this month's best moments as well as give a shout out to all my family and friends who have supported me in some way throughout this journey.

THANK YOU! GRACIAS!

1. Memes
One of the most exciting things for me this month, has been to see the overwhelming response to my memes. Both from scleroderma patients themselves as well as family, friends and total strangers. I have shared these pictures with as many people as possible and they have kept paying it forward and sharing them with others. I have received emails, messages and comments from people I've never met telling me how much they relate and how brave they think I am for putting my story out there. It has truly touched my heart and reinforces what I know to be true: I am not alone and my story matters because I can give a voice to those who cannot speak. None of the memes went "viral" but I did reach more people than I ever expected.


2. TX Chapter on Great Day Houston

This past Thursday, June 26th, the Scleroderma Foundation, TX Bluebonnet Chapter had the privilege of being in the audience for KHOU 11's Great Day Houston show. This show is a daily talk show/morning show hosted by local celebrity Deborah Duncan. Back in May, I was in the audience supporting the Lupus Foundation and had so much fun that I decided to reach out the show again during scleroderma awareness month in the hopes that they would let us be a part of the audience to raise awareness.  Earlier this month, I sent an email out to their audience coordinator and asked when we could come, in a matter of a couple of hours we had set a date and were told to bring 12-15 people to fill seats. I spent the next couple of weeks trying to rally people to make sure we had enough guests. And...we did!

I believe there were at least 20-25 people there wearing teal, and supporting our cause. Our board president Audrey Brouwer shared information about scleroderma at the end of the show and afterwards, Deborah said she would be in touch with us to bring in a patient and/or doctor to interview about the disease. (How awesome would that be!) We had a great time, clapping, cheering, laughing and even eating BBQ with Deborah Duncan and her staff. I am so appreciative of all the people that came out to support even for just 2min of fame on local TV.

Check out the segment below:


Ay Papi...
3. Family Support
It is unbelievable the amount of support I have received from everyone in my immediate family through to cousins of mine that I had no idea were even keeping up with me on Facebook or reading my blog. My family has found ways to show support in the simplest of ways and even going above and beyond what I ever expected or could have hoped. For starters, my parents have spent the month wearing teal as often as possible...even if that meant my quirky father putting his T-shirt on backwards instead of just having my mom take a picture of his back.

Love her!
My mom has also made a point to share inspirational quotes, images and scleroderma facts on her Facebook page on a daily basis. She is becoming quite the advocate!

The second group of people that have wowed me with their support in my family has been my cousins. On both my mom and my dad's side, they have done everything from paint their nails, and wear teal at the gym, to waking up at the crack of dawn just to appear on the Today Show in the hopes of raising awareness. I feel so blessed to have this many people in my life helping me fight the good fight and doing so much just cause little ole me is chronically ill.

Daniela, Cinthia, Ailin, Iraida & Iris- THANK YOU!
Throughout the years these awesome ladies have participated in scleroderma walks with and for me, sent me love and flowers after hospital visits and flare ups, and are always praying for me and trying to find ways to brighten my days. I was so elated when I spotted Iris on the Today Show this morning, making noise, smiling and waving a sign on only 3 hours of sleep! You are a trooper cuz, and I love you for it!!

Over the years, I have learned that many patients diagnosed with a chronic illness often have to cut people out of their lives because they don't understand what they are going through, or they judge them or refuse to accept their condition and choose to live in denial. I can honestly say, that my experience has been the opposite. I have had such an outpouring of love and understanding come my way (slowly but it is growing as I educate people more and more) that I almost don't know how to handle it all. My friends and family may never truly understand what I've gone through our what lies ahead of me, but they sure as hell are doing their best to support me through it, and that's more than enough.

(Yes, I know I didn't mention the hubs...he's getting a post all to himself tomorrow- ya'll know I can't do this without him...so stay tuned!)

4. Friend Support
Finally, the outpouring of support that has come from my friends via social media has been awesome. Again, it has often been those individuals that I never would have suspected or didn't even realize were "following" me or reading my blog. I love that both men and women have rallied at different times this month to wear teal, share one of my memes, or comment on a blog post.

I may feel like a squeaky wheel sometimes, but I think it's finally paying off! So, to all my friends that made one small sacrifice to show your support, and hopefully shared why you were doing it with one other person- THANK YOU! Now, my world is a little brighter because one more person knows what scleroderma is thanks to your small effort, and in order for patients lives to be saved, better treatment found, and research money to be had- awareness is key.

Michelle, Angelie & Joe
This month is not over yet, but it's getting close. Just a couple more days. But just because we reach the end of June does not mean my (our your) work is done. I know I will continue to blog (as often as energy and time permit) and I will keep doing the work I am doing for the Scleroderma Foundation until they force me out.

I know many people who are silent and private about their illnesses, and that is their prerogative. I am not one of those people and I never will be. It is important to me to empower myself and others with knowledge and awareness. If we do not advocate for ourselves, no one else will and when you're dealing with apathetic doctors and nurses, a faulty medical system, and just straight up ignorant and rude ass people, YOU HAVE to care, you HAVE to be educated, and you HAVE to speak up for yourself.

I hope that through this process I have given someone (friend, family, patient or caregiver) the strength and the foresight to continue pushing through this terrible disease and moving forward towards living a better life.

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30 Ways to Help Spread Scleroderma Awareness

Sunday, June 22, 2014

On Strength & Beauty

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It is now day 22 of National Scleroderma Awareness Month and we have but a week left until it is officially over. But for those of us living with this disease, our campaign to raise awareness and our struggle to overcome our daily challenges is never over. For many of us, the one thing that keeps us going (aside from our friends and family) is the work that we do to educate and inform others about this terrible disease. Because I am not the only one trying to raise awareness and because I have met so many other wonderful souls whose lights shine just as bright if not brighter than mine, I wanted to take some time during this month, to recognize those women that have inspired, educated, and informed me along the way with their incredible stories, triumphs, tribulations, and strength. After all, I am not alone, and it's not all about me.

Today's meme and post is dedicated to all my sclero sisters, many of whom may not always feel beautiful on the outside, but carry more beauty in their souls and hearts than most people I have ever met.


Scleroderma has its visible symptoms as well as its invisible ones. For a young female in her 20s-30s, the physical manifestations of scleroderma can be frightening, annoying, and depressing. Your lips grow smaller, your skin grows tighter (which at first makes you look RADIANT) and itchier, you may suffer from discoloration and telangiectasia (tiny red spots) on your face, arms, hands and neck. It can definitely begin to wreck havoc on your self-esteem and social life if you let it.

It is not easy to accept these changes at first, but those of us that understand that there is a greater purpose to all of this quickly realize that our beauty is more than skin deep. That our beauty lies in our strength, in our smile, in our souls, and in what we have to give. 

Although I have only met one of these ladies in person, they inspire me each and every day to push through the pain and let my light shine. See, I kept waiting for the darkness to go away until I realized there would always be darkness -but it was up to me to let my light shine through the darkness so that not only I could see, but so that others could see and experience the warmth that my light gives- these ladies have taught me how to do that. 

Jovana:
Jovana is one of the support group leaders for the Scleroderma Foundation San Antonio support group. I first met her last year at the Stepping Out to Cure Scleroderma Walk in San An. She and her group single-handedly managed to host the largest walk TX has seen in a while! There was a marching band, face painting, waffle breakfast, bouncy house, DJ, raffles and giveaways. It was quite a turnout and quite an event. 

Since then, we have connected via Facebook, at a patient education event, and at a recent fundraiser (again, another success!) in San An. In this small but tight knit scleroderma community, it doesn't take much to feel connected to other patients, and I can honestly say that although I don't know all of the details of her journey/story, we are sclero sisters. She is a kind and gentle soul with a very large and giving heart. Her work with the foundation is driven by passion and desire. I hope that as the years go by, I am able to give as much as she already has.

Here's her story as published in the March/April Scleroderma Foundation TX Bluebonnet Chapter Newsletter: 

"You have Scleroderma." At the age of 14 I had never even heard such a word. My symptoms of cold fingers and skin changes started the year before in which doctors kept saying to "stay warm" and "stay out of the sun." My mother knew there was more going on than just being cold. 

I was forced to quit playing softball and volleyball in high school because my hands were starting to stiffen up and curl in. My joints were inflamed, I wasn't able to swallow my food and it was difficult to walk. Soon after I couldn't even jog a few blocks due to the severe shortness of breath. When doctors realized the Scleroderma was causing fibrosis on my lungs, they immediately started me on several toxic drugs to try and slow down this progression. At the rate this was going I was told I wouldn't live past the age of 19.

Fast forward a years, after numerous hand surgeries, hospitalizations, and years of IV infusions my lung involvement was considered "stable". Or so we thought.

I was frustrated and angry with seeing every doctor in the book, being in every hospital, taking so many medications for this disease all to just be stable for short periods at a time. I just chose to live and cope the best way I could. I was getting married and had already had a son. My wonderful life seemed to distract my symptoms for some time.

Early 2007 was when I hit rock bottom. Getting around on mostly a wheelchair and on oxygen 24hrs a day, I didn't even look the same. I remember the look in my doctors face when he told me there wasn't anything left that he can think of to help with the lung involvement. I thought to myself "That isn't true!" I have my whole life ahead of me, all I prayed for was to be a mother and a wife.

I was sent to see Dr. Burt at Northwestern Memorial Hospital in Chicago. He was conducting a study using healthy stem cells that were showing to reverse or possibly pause the progression of Scleroderma. The study consisted of intense chemotherapy, injections, isolation, and an almost 3 month stay in the city.

I promised my son and my family that I would return home a healthier person. I kept that promise and just completed my final follow up visit this past November. Instead of my lungs being "stable" they have improved. I consider having Scleroderma a blessing to me. Despite enduring such pain and setbacks, I find joy and fulfillment in having met so many people in the past 17 years. With pain comes strength and I choose to LIVE my life one day at a time. I am now one of the support group leaders in San Antonio. I love our group so much, we are family and I wouldn't want anything different.


Jess:
Jess is a young lady from Florida that I met while simply searching the word "scleroderma" on Facebook. She and I have never met in person, but we exchange stories, health tips, and ideas via Facebook often. 

She is younger than I am, and has already done so much to raise awareness not only in her own
community but across the country as well. She has way more followers and "likes" than I ever will and her spirit, strength and tenacity shine through in everything she does. (And that's just from the pictures I've seen- can't wait to meet her in person one day!) From fundraising events with the Miami Dolphins, to making presentations and motivational speaking at health fairs and events, she inspires me to keep raising awareness on good days and bad days because if she can do it, then so can I.

She has overcome more obstacles in the last 6 years than most people her age will in a lifetime and she will continue to fight this battle, as she is now trying to raise money to undergo stem cell procedure to at least slow down the progression of the disease so she can continue living her life.

Here is her story via her website: Scleroderma Strong (see, how awesome she is, she even has a freaking website dedicated to her journey and raising awareness!!)

Tricia
And last, but definitely not least, my dear friend Tricia Moses. She and I were connected through my cousin Iraida who told me she had a coworker that was suffering from the same illness I was and wanted to connect with someone who understood what she was going through. Around 2009/2010 Tricia (who lived in NY at the time) and I connected via telephone and spoke for over an hour comparing symptoms, medicines, laughter and even a few tears. 

I immediately Facebooked her and we have remained connected ever since. Tricia's story is probably the most incredible of them all. She recently underwent a double lung transplant (yes, double) just to save her life. The fibrosis in her lungs had gotten so bad she was on an oxygen tank almost 24/7 and the meds were of no use. She first postponed the procedure to ensure her students did well on their state tests (oh, how us teachers will do anything for our kiddos), and then she had to wait several months before getting a donor. She finally did, and is steadily recovering. 

All the while, she posts daily inspirational quotes, takes amazingly cute selfies, and lifts me up when I'm feeling down and have no one else to turn to. 

Tricia also was nominated for and WON a Hometown Hero Award for the work she did in the classroom while battling this disease. (If that's not beautiful, I don't know what is) See the link and video below for more of Tricia's amazing story! 

What I love most about these ladies is that they don't sit around feeling sorry for themselves. Of course they have bad days. We all do. But they take what little energy and good humor they have and share it with others. They are more positive and full of life than most "normal" and "healthy" people because they know how lucky and blessed they are just to be alive.

What do YOU think of my sclero sisters? Please share your comments below!

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30 Ways to Help Spread Scleroderma Awareness