So for a few years I have been toying with the idea of starting a non-profit to help and do things for the people and causes that I really care about. My reason for wanting to do my own rather then link up with these larger non-profits that are raising millions and millions already is simply because I don’t trust them. With non-profit there is too much room to pocket donations and id like to know that 85% to 90% of what I either donated or raised is actually helping someone and 10% to 15% is covering cost rather than only having the mandatory 15% that is required to be a non-profit. My percentages might not be 100% realistic but bottom line I want to see that my money, gifts or time goes to real people and really making a difference in someone’s life. So little by little ive been researching the idea and will hope to have one up and running in the next year.
I came across this organization that is just spreading education through word of mouth and social media Invisible Illness Week, what is an invisible illness basically everything and anything you may be dealing with from Cancer, to Mental Disorders to Arthritis its all one in the same and sometimes misunderstood.. I love the idea of educating people and think this is a great way to help make a small difference. So im going to see what its all about and participate. Its seems like a great way to spread some strength and education all for free. So here is my 1st task that im participating in. This is what I came across on WWW.INVISABLEILLNESSWEEK.COM. Oh and P.S. I guess this org is local here in San Diego! BONUS!
Last year hundreds of people participated in our “30 Things” Meme. We’d love to hear from you again (even if you filled out the 30 Things About My Invisible Illness You May Not Know last year, you may have some new answers this year… it will be interesting to see which ones!).
This is a great way to blog about your invisible illness too. We may say, “no one understands!” but have we really given them the chance to? Fill this out, post it on your blog or on Facebook, etc. and then let your friends and family know. You may even be surprised to find out who you know who is living silently with his or her own invisible illness.
30 THINGS ABOUT MY INVISIBLE ILLNESS YOU MAY NOT KNOW
1. The illness I live with is:
Thrombotic thrombocytopenic purpura TTP
It is a rare disorder of the blood-coagulation system, causing extensive microscopic clots to form in the small blood vessels throughout the body.These small blood clots, called thromboses, can damage many organs including the kidneys, heart and brain. In the era before effective treatment with plasma exchange, the fatality rate was about 90%. With plasma exchange, survival at six months is around 80%. Immunosuppressants, such as glucocorticoids, rituximab, cyclophosphamide, vincristine, or cyclosporine may also be used if there is relapse or recurrence following plasma exchange.
2. I was diagnosed with it in the year:
3. But I had symptoms since:
4. The biggest adjustment I’ve had to make is:
Being aware of my body and how it feels. The 3 times I was hospitalize because my platlet counts were at dangerous levels 13, 4 and I think I was at 6 the last time. If I hadn’t tried to shake it off and take my fatigue, weakness or body aches as hangovers, colds, or just feeling tired I could have gotten to the hospital days before and not have put myself and my family in such scary situations. (FYI Platlets should be 340 to 140 in a person anything lower is cause for concern and at 10 your bodies organs start to fail or shut down completely.) The 2nd biggest adjustment is getting my blood check every 2 weeks. Its annoying especially when you feel great but its when you put your guard down it like to creep up.
5. Most people assume:
That I am cured. I am completely healthy however there is no cure for TTP, I am considered in remission and have been given a 50% chance of never being sick again. Of course they said that the 1st time and I manage to get sick 2 more times. I have tons of faith that it’s not coming back this time.
6. The hardest part about mornings are:
Some days it’s hard to get out of bed, being tired is just part of the territory. It doesn’t happen as often anymore. Most days are great but every once in while I just can’t find the energy to move.
7. My favorite medical TV show is:
Dr. Oz, I have the biggest crush on that man.
8. A gadget I couldn’t live without is:
Literally, if it wasn’t for the Plasmapheresis treatments and that big robot looking machine that they hook me up to in order to pull out blood from my heart into this machine that separates through only medical magic is how I can describe it, my blood and plasma so this new donated plasma can be mixed with my blood and given back to me. (Special I LOVE YOU to all my friends and family that donated so much to make sure I got plasma from people who loved me and prayed for me. It took 2 people to donate for 1 treatment. I did 3 months of this treatment and every day we would guess which bag was whose. And yes I could tell if you drank before you donated or ate too much greasy food in your diet! lol)
9. The hardest part about nights are:
My nights have never been hard not here at home anyways. In the hospital its mostly an emotional difficulty. Being in the hospital for so long and so many times it was hard to see my momma sleeping on a chair next to my bed.
10. Each day I take __ pills & vitamins.
2 Multi Vitamins, 1 Iron, 4 Calcium, 2 Omegas, 6 Catalyst, 1 Folic Acid, 6 Biotins.
11. Regarding alternative treatments I:
I never really looked into them.
12. If I had to choose between an invisible illness or visible I would choose:
I wouldn’t choose, I am happy with my life. I see it as a blessing. Its changed my life, my way of thinking, my passion and finally a friendship that on my own I could never achieve with my brothers. I would never give up or want to change what my disorder has given me.
13. Regarding working and career:
Ughh ok well I had dreams of taking over my Dads business. Yes I LOVE TILE, CONSTUCTION, REMODELS, DESIGN, ANY NATURAL STONE FABRICATION! Once I got sick I decided I want to go back to my original plan after high school and that was to become a Research Psychologist so I could study behaviorism and write books. After being forced to drop classes 3 times because I had to be hospitalized, I gave up. I didn’t think id ever stay healthy enough long enough to finish a semester. I was put on disability since being tired and having so many bad days I wasn’t a dependable and reliable employee option. Fast forward 4 years my past time hobby has now turned into a full time career and brand that I am building. And if I have a bad day I just turn off my business phone or schedule myself 2 days off and rest.
14. People would be surprised to know:
I gained 80lbs on a steroid treatment I was given in 2009 when I did chemo. Already a big girl I almost hit that 300 mark. People that meet me now could never imagine I could have been so big. I have since changed my eating habits, vitamin intake and took up boxing and gave up those stupid hit the wind kickboxing classes and did what doctors told me I couldn’t do. since steroids turn in fat sockets like rubber lining. I tried it all and after my last attempt had me at a standstill the dr said no diet change or exercise or gastric surgery was able to change that my body was now lined with this rubber fat. I cried for a month and ate takis everyday. Lol but yes I snapped out of it and have lost 150lbs in total, 110 I credit to my lifestyle change with Advocare.
15. The hardest thing to accept about my new reality has been:
I will have a drs appointment every 6 weeks for the rest of my life and blood work done every 2 weeks. Accepting chemo and steroids as a treatment and then dealing with hair issues and weight gain that came with it. I refused the 1st 2 times because I thought 50% chance that I would be ok without it looked like good odds.
16. Something I never thought I could do with my illness that I did was:
I had to accept that having kids even though I could it would not be something I wanted to do anymore. Thank God, they are now, with proper care I can have kids and not worry about them inheriting my bad gene.
17. The commercials about my illness:
The first time I heard my disorder on TV I jumped with excitement. Lol I felt famous haha. Maybe you have heard the commercial it say blah blah blah may cause blah blah blah but see a dr cause this could be symptoms of a rare disease known as TTP. I don’t even remember what the commercial was for.
18. Something I really miss doing since I was diagnosed is:
NOT CARING, Sometimes I think its made me a lil too nice, sympathetic and emotional. Sometimes!
19. It was really hard to have to give up:
My old selfish lifestyle. It was so easy having fun not having a care or a responsibility except myself.
20. A new hobby I have taken up since my diagnosis is:
Eyelash Extensions, fundraising and Boxing
21. If I could have one day of feeling normal again I would:
I Like this normal a lot better than my old normal.
22. My illness has taught me:
So much, about health, friendships, relationships, faith, trust, passion, compassion, goals I could go on and on. I really believe its lead me to define the person im meant to be.
23. Want to know a secret? One thing people say that gets under my skin is:
The lack of education available to teach kids and adults about health, food, vitamins, living with diseases. Some people need to hear it bluntly 1 time to understand it if we took 10 minutes ainstead of 5 to teach things different we might save ourselves lots of unnecessary illnesses, troubles or headaches.
24. But I love it when people:
Want to make a difference and either get educated or donate their time or money to help.
25. My favorite motto, scripture, quote that gets me through tough times is:
I CAN DO ALL THINGS THROUGH HE WHO STRENGTHENS ME. Philippians 4:13… It’s the tatt on my back!
26. When someone is diagnosed I’d like to tell them:
To see the blessings and good that is coming with it. And remind them that the reason they are sick and not someone else is because they were the strongest person to handle it to be able to bless them and their families with what is to be the outcome.
27. Something that has surprised me about living with an illness is:
That I could live and just be sick or scared or take advantage and milk it cause you know I love to be spoiled. So im surprised I am so strong even on bad days I just take it, try not to call my mom crying cause I know she freaks out so I call Angelica instead and then we decide if it’s a need to know situation for my mom… sorry mom you had to find out this way hahaha.
28. The nicest thing someone did for me when I wasn’t feeling well was:
Be by myside, even if it was through the phone, in person, in a card. Those meant so much to me. The people you least expect to be there are and vice versa. I remember every call and visit except for the weeks I was in ICU L but my mom made sure to tell me who had came and when she could only describe them as the guy with the zip code on his head or the Asian guy Gio would translate that to a name for me. Lol
29. I’m involved with Invisible Illness Week because:
It seems like an awesome chance to educate people, inspire and help.
30. The fact that you read this list makes me feel:
Feel free to copy and paste your own answers as a comment, ill read them for sure!