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.

*****************************

Want to "like" the meme above?

Find me on FaceBook: https://www.facebook.com/jasminne.mendez
Twitter: @jasminnemendez


30 Ways to Help Spread Scleroderma Awareness

14 comments:

  1. i had this for 3 years.it was all over my arms,chest,stomach,legs,feet for 3 years and i had 4 of them in my arms taken off .The surgeon that took them off told me they would grow back,they did come back,the pains i get was killing me so I went to my doctor but all i keep on hearing is story. i went on search on the internet where i came across someone testifying about an herbal doctor curing him of his disease then i chose to contact him cause dercums was frustrating but at first i did not believe i was just giving a try of him. to my greatest surprise the herbal medicine sent to me did not only reduce them but also take them out completely and for over a year now no symptoms of it coming back
    kindly email him to get yours via: drfredherbalcuringcenter@yahoo.com ,he's an herbal doctor tell him i referred you to him and also he can cure other disease and sickness like; scleroderma,herpes,hives cause his a certified herbal doctor with license

    ReplyDelete
    Replies
    1. TRULY DR AKUNA HAS A PERMANENT CURE FOR HERPES ZOSTER CONSULT HIM NOW!! EMAIL: DRAKUNASOLUTIONTEMPLE@GMAIL.COM

      Good news, what a miracle to be cured after being diagnosed of 14years Herpes Zoster and it was so irritating that i have to go through different medicine man, but i am very happy when Dr Akuna came to me and help me, my doctor made it clear to me that there is no cure, but that has been dropped today and now you can get cure from any form of disease.HPV.HBV.HIV AIDS.DIABETES.STOMACH ACHE.PENIS ENLARGEMENT.GENITAL WARTS 1&2 and many more. so why wait when you live in pain when you can be cured, even when you are born with any forms of disease, i am sure he has a cure for you, just contact him and wait for him to help you, do not doubt his powerful herbal medicine. because he is a servant sent from above to save the universe from its pain. contact him now and also witness his wonders and also testify like me. contact him on his email address:drakunasolutiontemple@gmail.com or his websites:http://drakunasolutiontem.wixsite.com/dr-akuna or his Mobile:+2348154625070


      Delete
    2. Good day to all viewer online am Monica Watson From USA..Texas am so happy sharing this great testimony on how i was checking for solution in the internet then miraculously i came Across Dr.Zuku the powerful herbalist that Cure Numerous individuals Herpes Simplex Virus,so I contacted him base on the testimonies I?m seeing about him on the internet, I was cured too by him, kindly contact him today through his email he can help you..drzukuspelltemple@gmail.com and so he can cure types of diseases like,HEPATITIS B,DIABETICS,CANCER,HPV,LOW SPERM CAM.. all thank to you Dr Zuku for your kindly help in my life his Mobile number +16177296273

      Delete
  2. (MUST READ: HOW I GOT CURED FROM MY HIV/HPV VIRUS) I was diagnosed of HIV in 2012 and I have tried all possible means to get cure but all to no avail, until i saw a post in a health forum about a herbal doctor from West Africa who prepare herbal medicine to cure all kind of diseases including herpes virus, at first i doubted if it was real but decided to give it a try, when i contact this herbal doctor via his email: drewanherbshome@gmail.com, he prepared a herbal medicine and sent it to me via courier service, when i received this herbal medicine, he gave me step by instructions on how to apply it, when i applied it as instructed, i was cured of this deadly virus HIV within 3weeks of usage, I am now free from the virus, i was tasted negative. He also told me he cures so many disease like Hepatitis, cancer Influenza, coronary artery, lower respiratory infections,Trachea, bronchus, HIV/AIDS, HPV, Herpes, Kidney failure, Arthritis, Diabetes, Hypertension, Stroke, Obesity, Infertility/Impotency, Cancer, Eye Problem, Skin Problem, Fibroid Tumor, Ulcer, Prostate Problem, Asthma, Weight Management, Gonorrhea/Staphylococcus, Candide, Low sperm can, Weak erection, Weak ejaculation, Pile, Elephantiasis, Skin Infection, Paralysis, If you want your ex back and many more he listed. please if you are suffering from any of these diseases contact this great herbal doctor called Dr. Ewan on his Email: drewanherbshome@gmail.com. You can also call him on his mobile number or Add him on whats app via: +2348112276982 . website: www.drewanherbshome.wix.com/ewan

    ReplyDelete
  3. My name is Rose Ana from united states, i am here to thank DR Mohammed the powerful spell caster that rescue
    me from HIV with his powerful herbal medicine. I was diagnosed of this disease in the year
    2014, and because of this, i was very unhappy with my life, and i went into research on how i can get cured,
    i contacted a lot of spell casters and herbal doctor and none of them could help me rather than scammed me and took away my money
    without helping me. All this period of my life, i was sad and unhappy so one day as i was
    in the Internet i decided to sign in a friend guest book, only for me to see was a testimony
    of a lady on how she was helped by DR Mohammed, so i was confused to contact him at the moment
    because i didn't want to be scammed again but after one week, i decided to contact him, so
    when i contacted him, he assure me that he will help me and i told him that many spell casters
    has also told me this but they all scammed me, he told me not to worry that he is going to help me,
    So i believe in him because all i wanted was to be cured, so he prepared the HERBAL MEDICINE for me and
    send it to me through DHL courier service, after some week i stated noticing some big changes in my body they i know God has done it for me, i was very happy and healthy, i went to the hospital for test and to my happiness
    the tested that i was cured from the disease.. This gladdens my heart and everybody in the hospital
    was surprised even the Medical Doctor, So viewers this doctor is a God Gifted man and can help you to cure
    all types of sickness like HIV AIDS, CANCER, PILE, KIDNEY PROBLEM, SYPHILIS, DIABETES, HERPES, COLD SORE, he can also restore your health . you can contact me for his number and email

    ReplyDelete
  4. My name is smith jay from united states, i am here to thank DR Mohammed the powerful spell caster that rescue
    me from HIV with his powerful herbal medicine. I was diagnosed of this disease in the year
    2014, and because of this, i was very unhappy with my life, and i went into research on how i can get cured,
    i contacted a lot of spell casters and herbal doctor and none of them could help me rather than scammed me and took away my money
    without helping me. All this period of my life, i was sad and unhappy so one day as i was
    in the Internet i decided to sign in a friend guest book, only for me to see was a testimony
    of a lady on how she was helped by DR Mohammed, so i was confused to contact him at the moment
    because i didn't want to be scammed again but after one week, i decided to contact him, so
    when i contacted him, he assure me that he will help me and i told him that many spell casters
    has also told me this but they all scammed me, he told me not to worry that he is going to help me,
    So i believe in him because all i wanted was to be cured, so he prepared the HERBAL MEDICINE for me and
    send it to me through DHL courier service, after some week i stated noticing some big changes in my body they i know God has done it for me, i was very happy and healthy, i went to the hospital for test and to my happiness
    the tested that i was cured from the disease.. This gladdens my heart and everybody in the hospital
    was surprised even the Medical Doctor, So viewers this doctor is a God Gifted man and can help you to cure
    all types of sickness like HIV AIDS, CANCER, PILE, KIDNEY PROBLEM, SYPHILIS, DIABETES, HERPES, COLD SORE, he can also restore your health . you can contact him herbalcure12@gmail.com, whatsapp: +2349036036397

    ReplyDelete
  5. I has suffered for Human papillomavirus HPV) for 2years, I was given some tablets at the hospital but I refused to take it, They said I have to be on it for life so I don't want take a drugs everyday for life. No point in taking medicine everyday when u won't get cure from it and I was advice to seek for natural herbal cure, after some time I found dr osuma is the most trustful herbalist that have herbs to cure wicked symptom's,I emailed dr osuma for 2weeks been his patient he cured my (HPV) with his herbal. I only used his natural herbs for two weeks it was 100% cure. I'm not (HPV) patient anymore. I'm happy about it i finally got cured out of this mess been in my body for 2years. I also recommend you if you're living with (HPV) or herpes symptoms i also want you to be free contact dr osuma with the email attach to my post drosumaspletemple@gmail.com or drosumaspelltemple@gmail.com you call or whatsapp his number on +2349031670905

    ReplyDelete
  6. I was cured of HIV with the used of natural herbs. My name is Sarah and am from US. I love herbs so much. Most times, injection and drugs are just a waste of time. I was cured 8months ago, i suffered from HIV for 13yrs but with the help of DR. Baba Ogu herbal medicine, i was cured within few weeks of drinking the herbs he sent to me through courier delivery service. This same doctor also cured my Aunt from herpes, as soon as i heard she had herpes, i quickly refer her to Dr. Baba Ogu and she was cured too after drinking his herbs.I have referred more than 15 persons to Dr. Baba Ogu and they were all cured from their various illness. Have you taken herbs before?. You have spent so much money on drugs,injections,surgeries etc and yet you have no good result to show for it. Contact Dr. Baba Ogu now, he is a herbalist doctor, i assured you of a cure if you drink his natural herbs. Dr Baba Ogu have herbs that cures Hiv, Herpes, diabetics, asthma, hepatitis,HBP, STD, cancer, chronic, etc. He is also a spell caster, he cast all kinds of spell, do you need your EX back? Contact him now on: drbabaogu@gmail.com or WHATSAP/CALL him on +2348137291215. Pls Share the news to other people once you are cured too. Thank you

    ReplyDelete
  7. I was cured of HIV with the used of natural herbs. My name is Sarah and am from US. I love herbs so much. Most times, injection and drugs are just a waste of time. I was cured 8months ago, i suffered from HIV for 13yrs but with the help of DR. Baba Ogu herbal medicine, i was cured within few weeks of drinking the herbs he sent to me through courier delivery service. This same doctor also cured my Aunt from herpes, as soon as i heard she had herpes, i quickly refer her to Dr. Baba Ogu and she was cured too after drinking his herbs.I have referred more than 15 persons to Dr. Baba Ogu and they were all cured from their various illness. Have you taken herbs before?. You have spent so much money on drugs,injections,surgeries etc and yet you have no good result to show for it. Contact Dr. Baba Ogu now, he is a herbalist doctor, i assured you of a cure if you drink his natural herbs. Dr Baba Ogu have herbs that cures Hiv, Herpes, diabetics, asthma, hepatitis,HBP, STD, cancer, chronic, etc. He is also a spell caster, he can cast a spell to bring back your EX lover. Contact Dr. Baba Ogu through his Email address on: drbabaogu@gmail.com or WHATSAP/CALL him on +2348137291215. Please try to share the news to others people once you are cured. Thank you.

    ReplyDelete
  8. TRULY DR AKUNA HAS A PERMANENT CURE FOR HERPES ZOSTER CONSULT HIM NOW!! EMAIL: DRAKUNASOLUTIONTEMPLE@GMAIL.COM

    Good news, what a miracle to be cured after being diagnosed of 14years Herpes Zoster and it was so irritating that i have to go through different medicine man, but i am very happy when Dr Akuna came to me and help me, my doctor made it clear to me that there is no cure, but that has been dropped today and now you can get cure from any form of disease.HPV.HBV.HIV AIDS.DIABETES.STOMACH ACHE.PENIS ENLARGEMENT.GENITAL WARTS 1&2 and many more. so why wait when you live in pain when you can be cured, even when you are born with any forms of disease, i am sure he has a cure for you, just contact him and wait for him to help you, do not doubt his powerful herbal medicine. because he is a servant sent from above to save the universe from its pain. contact him now and also witness his wonders and also testify like me. contact him on his email address:drakunasolutiontemple@gmail.com or his websites:http://drakunasolutiontem.wixsite.com/dr-akuna or his Mobile:+2348154625070


    ReplyDelete
  9. Hi Viewers, My husband was diagnosed officially in January of 2010 but had symptoms for two years prior to that. We are blessed in that he has a slow moving case and so far has affected his arms And legs. Now he has also develop slurred speech. What I did not expect though is that over the last 7+ years, ALS has slowly killed our marriage. The disease has changed him physically and mentally. Now we are not connected. We just continue to soldier on for the sake of the kids who are 14, 12, and 9. He cannot work so I work full time. The stress and responsibility I feel sometimes is overwhelming. I truly believe he does not love me anymore. And if it weren't for the ALS, we would probably separate. I feel very grief stricken over the death of our marriage. I desperately search for an alternative cure to save my marriage till a friend of mine from UK told me about Dr. Godsent Yare who cured her husband from ALS, PLS, FSHD with HIs Herbal Healing Oil and Root/Herbs. I contacted Dr. Yare through His what's app number and told him about my husband ALS problem and he assured me that my husband will be cure. I bought His cure for my husband and he sent it through a courier delivery service to my address which I sent to him. I received it within 4 days and my husband immediately commerce usage as prescribed and was totally cured of ALS within two months. You can contact Dr Yare Mohamend via his email: drmohamendherbalremedy@gmail.com or call/whatsapp on +2348148010628. This great man has save my husband and also save my marriage. My husband is completely free from this disease and now loved me more then ever. Thank you Dr. Yare Mohamend for the help. I promise to share your awesome herbal cure with friends and family.

    ReplyDelete
  10. Hello, My name is emilly, am from USA. I was diagnosed with HIV for close to 8 years, Dr Oboh Daniel of (drobohdaniel@gmail.com) cured me with natural herbal medicine. All i did was to order for the herbs for HIV, he sent it to me and ask me to drink it for a period of four weeks, but before the completion of the 4th week all the HIV symptoms disappeared, when i went for checkup, i became NEGATIVE. I've done close to 5 HIV test already, they all turned out to be NEGATIVE. He can also provide herbs for all kind of illness including asthma, cancer, Diabetic 1&2, Gonorrhea, Barrenness, Impotence, , High Blood Pressure,Epilepsy, Herpes, Chronic diseases of the heart, Malignant tumors,Diarrhea,Arthritis, etc. you can contact him via: drobohdaniel@gmail.com or whatsapp him on +2347035127032.......Goodluck

    ReplyDelete
  11. Good day to all viewer online am Monica Watson From USA..Texas am so happy sharing this great testimony on how i was checking for solution in the internet then miraculously i came Across Dr.Zuku the powerful herbalist that Cure Numerous individuals Herpes Simplex Virus,so I contacted him base on the testimonies I?m seeing about him on the internet, I was cured too by him, kindly contact him today through his email he can help you..drzukuspelltemple@gmail.com and so he can cure types of diseases like,HEPATITIS B,DIABETICS,CANCER,HPV,LOW SPERM CAM.. all thank to you Dr Zuku for your kindly help in my life his Mobile number +16177296273

    ReplyDelete
  12. I can't express my gratitude to Dr MABUWA for making me a living testimony. i have battled with HERPES SIMPLEX VIRUS 2 for about 7years now, and i have done all i can to make sure i am cured but nothing worked out, but miraculously my friend invited me to see a video on his Blog and as i visited i decided to see few of the comment below, and i found some people talking about Dr MABUWA, and i decided to contact this great herbal healer to also help me,so i wrote to him, and he replied me back and assure me that i will get a cure for my HERPES SIMPLEX VIRUS 2. and after preparing my medicine he sent it to me and when i started using it for 2weeks i was completely cured, I am assuring you that you will be cured if you also contact this great man on his Email:drmabuwasolutioncuretemple@gmail.com or Call/What app:+2348130714541

    ReplyDelete