I just want more time to live..I'm doing everything I can to battle this serious disease. Let me explain.
I had much needed tailor bunion surgery and anthroplasty on both feet in 2017 . With no fault of the doctor...things went wrong.. ..After the surgery my nervous sysem ended up malfunctioning. My peripheral nerves in both feet became damaged, my bones couldn't remodel themselves. My feet became discolored and damaged. . My skin on both feet feels like its being crushed with blocks of ice.
After many doctors, many expensive tests, after 3 physical therapist sessions
I was finally diagnosed by my doctors with
Complex Regional Pain Syndrome Type 2 ( also known as Causalgia)
It's a very Rare progressive Neuro inflammatory disease.
With no cure at all. Some people go into remission but mine has progressed too far.
CRPS is very life-threatening in many cases, being that it is a gateway illness to other diseases, such as dysautonomia, autoimmune illnesses, pulmonary embolisms, heart attacks and more. These illnesses, caused by CRPS, can cause fatal symptoms and shorten your life span ...
My immune system has also become compromised. My body can no longer fight off disease as well as it used to... including viruses and bacteria. If a verycomplicated virus hits me, I won't survive it.
Back in September 2019 at last visit my doctor discovered I'm suffering from osteopenia in both feet.
It has been very agressive with the spreading. First my ankle, and now both of my legs. These blood clots can easily shoot up to my lungs and cause a pulmonary embolism. So I've been more afraid now more than ever. However thats not the worse part.
In March 2020 the pain has reached my chest. Deep breathing hurts so much. My doctors all confirmed once it reaches my heart. I will not survive it.
Mine is so severe that it's caused me to have a permanent disability...I no longer can walk on my own.I use a wheelchair, rollator, foot braces and a cane. Every case of CRPS is different.
The pain is above anything I have ever experienced. The medicine is only a bandaid for a big wound.
It's worse than the feeling after the surgery I had. It's made everything harder.
Concentrating, carrying things, walking, standing, even sitting too long...all of it has been terrible... I have to even be gentle putting socks on. I sweat from the pain, I get massive headaches causing my memory and even my speech to change...,I get dizzy during the day, i have bad nausea and small black outs I've passed out. ..Been in the ER so many times now. One time in 2018 I just could not stand at all. Another time my foot was fractured. One time case the pain got so bad that my body shut itself down to protect me from going into any more shock but I couldn't wake up for 2 and 1/2 hours. Another more recent case in February 2020 I was rushed into the hospital and I became tachycardic and almost went into Cardiac arrest. thank God I made it in enough time because I wasn't alone and my friend was able to call 911. Even the nurses and doctor said if I didn't come in I may not have made it.
Recently March 2020 I ended up with food poisoning. Everyone else who ate the food was fine. However the smallest bacteria that a healthy person could fight off.....was more powerful than my immune system. I lost so much fluid that my kidneys started to shut down from dehydration.....my legs were swelling so much...thank goodness my friend was able to get me to the hospital in good time or this would have been fatal. It took massive amounts of medications, injections and IV fluids to help me.
2021... i now have a caretaker.
I fell again... I've considered taking my own life SO MANY TIMES. If it wasn't for therapy and my friends and family..it would have happned. CRPS is called the sucide disease for a reason. It's not that i dont think my life is important... but my pain is so bad I will do anything to stop it..
Since I have CRPS 2 so it will only get worse...The constant swelling and numbess is terrible already...
Sadly work has been so hard on me that I saw my doctor.... We took more xrays...
On top of my CRPS I was diagnosed with osteomalacia and osteopenia in both feet ... My bones are softening and my bones are easily fracturing now... I'm losing so much bone density
My doctors have all admitted that it is no longer safe for me to be working.... Even being alone too long .. the pain flares I get scare people, I can't move and I can't talk long .
So right now not having an income is going to really affect me more. I have to have hope. But it's been hard. Most days it's so hard to stay positive. I have to try. The whole process for getting a disability has been insane and most people know that. Takes a very long time.
I've written and published childrens books about disabilities to make some income but I do it to help. I want to help more people... please give me that time.
All I can do is use holistic treatments to slow it down...
The place I need to go to , my insurance will not pay for... the reason is that..it needs to be done by specialists who don't accept innsurance..so the treatments I need are super expensive and since less than 200,000 people have this, there isn't much funding for it.
But now without a job and a lengthy wait for SSI I can't easily support myself
I'm trying to raise at least $20,000 that will at least cover the treatments for a little and help me stay afloat..
This will give me 4 more years of treatment..4 more years of life....but I dont want to ask for more because everybody struggles.
I know I'm going to need prolong treatments for more, however I have to take what I can get.
The treatments won't cure me but it will slow the progression down a lot
. A type of palliative care.
I just wish I had my life back...I also wish to live a long life..
But.. I wouldn't wish this on my worse enemy.
I'm hoping for a cure one day, Not just for me...but for everyone with it... I really am.
I have to fiht until the end.
"It's not over till it's all been said
It's not over till your dying breath
So, what do you want them to say when you're gone?
That you gave up, or that you kept going on? "
- Steve Aoki/Louis Tomlinson
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