Update: out of the hospital after 6 days, since Saturday, appointment to schedule treatment is this coming Friday, August 3rd.
I'm in need of a new treatment for lupus after 10 yrs of been taking 4 different immunosuppressants the medications been damaging my liver and kidneys. The doctors now agreed that in order to stop the damage to the liver the only option is a chemotherapy use for Lymphoma, Leukemia, RA and Lupus.
For the treatment I will need to pay a high deductible of
$10,000. Due to the flair I been consuming my vacation time, sick time and short term disability only pay 40% of my salary, I'm in need to continue working as long as I can but if a big possibility I will need to be out of work.
Any donation will be really appreciated.
Here is my story: Talking about Lupus!
First I will start saying that I am Delmis Santos, I'm not Lupus and Lupus don't define me. I'm a better person because I learned what really have meaning in my life and live every day in pain, but to the fullest.
For the last 10 years I been living in a permanent roller coasters ride as many of the lupus patients, and learned how to life an unselfish life helping other understand lupus. When I was first diagnosed, I wanted to be able to pour out my feelings and frustrations and tell others about lupus to raise awareness for an underfunded disease, a Real Cruel Mystery. I wanted people to understand living with lupus. I wanted to talk about my diagnosis and what it was like to hear the words, “You have Systemic Lupus Erythematous" while I was unable to move at the doctor’s office. I wanted to run as fast as I could to help me process all that was thrown at me so quickly. I start waiting for a stopping point though in which I had enough stability in my disease to be able to say, “This is what has happened, and this is the resolution to it.” But there reality is that a time like that wouldn't come anymore to my life.
Learning to live "a normal life" in pain everyday set in motion a completely new life for me. Lab work, referrals to new doctors, high-dose steroids, Cell Cep, plaquenil, chemotherapy, more lab work that turned up more questions than answers, hospitals stay from infections, constant kidney infections, optic neuritis, brain vasculitis, and even 7 days in coma are only some of the complications that left me couch bound and sick for weeks and months afterward, more diagnoses for other autoimmune conditions, scleroderma, vasculitis, nephritis, neuropathy.............
There is always the worry I will feel bad and have to cancel plans and disappoint someone. There is a complete turn around from what my life used to be. I cannot even remember what it felt like to be carefree.
One moment everything was normal, and the next, I was thrown into a completely unfamiliar land. Ten years after diagnosis, and you would think that I’ve gotten my bearings. That I would be more familiar with the terrain of this new territory. You would be wrong though. Ask any lupus patient and they can tell you that the only constant with lupus is that nothing ever stays the same.
As one issue resolves (or not…), another one pops up and you work on treating it.
That is living with lupus. However, Life goes on. I have important things to do. I am woman in love, a mother, a daughter, a sister, a professional and a friend. I am living my story every day, but more important I wouldn't give up......... I will fight this battle and will continue fighting to find the cure.
If I'm ever to be selfish only one think I will be asking for..... "One day with out pain, my life with out Lupus".
Delmis SantosLupus flair
High dose prednisone
Lupus vasculitis, erythema nodosum.
- Ivette Ramírez
- Claus Kohler
- Angel Duran Ferrer
- Jessica Sacal
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