Krista's Medical Care Fund
***I have taken over running this page, but I want to thank my mother, Toni Linares, for starting this campaign and writing so beautifully about things that have impacted my life, and the lives of those I love. My story, written lovingly by my mother, is below.
Also, with this site I would love to bring awareness to some awesome organizations that I, with my illnesses, represent. www.projectsemicolon.com , www.invisibledisabilites.org , and #morethanmeetstheeye, campaign for invisible disabilites awareness. ***
My daughter, Krista, has been fighting serious health problems for most of her life. She spent most of her young years in and out of hospitals. She even had to have tutors sent to teach her at home or in the hospital because she could not always attend school. She has suffered through painful surgeries, and physical and mental disabilities. She is a fighter, but the years of pain and suffering have taken a toll on her. Krista was diagnosed with Severe Endometriosis and PCOS at the age of 13. She had several surgeries to help, but there is no cure for those diseases. She has to suffer with extreme and debilitating pain through every cycle. In her mid teen years she became very ill and lost her ability to walk. She was treated in Nemours, and then placed in a cancer ward in Wolfsons Childrens Hospital- because the doctors believed that she was suffering from Bone Cancer. She endured painful testing for months, including radioactive isotopes being injected into her system, PET Scans, MRI's, Marrow Testing etc…
At the age of 20, Krista was diagnosed with Pseudo Tumor Cerebra. (Now called Intracranial Hypertension)This is a condition that brings with it debilitating migraines because her spinal fluid pressure is extremely high and it also affects her optic nerves. She had numerous Spinal Taps, and was placed on many medications. Without treatment and continued care, she could lose her eyesight; or suffer from a stroke.
A few years after that, Krista was officially diagnosed with Bipolar Disorder. She had been exhibiting signs of Bipolar for years, but at that time we didn't understand it. Her Bipolar Disorder causes her to go through bouts of crushing depressive episodes, and out of control manic episodes. She has been suicidal, and has been going through treatment since her diagnosis. When Krista is going through an episode, she in not able to function. Again, there is no cure for this. Bipolar Disorder is serious, and it's so misunderstood. It effects every aspect of Krista's ability to lead a normal life. When she is going through a low or a manic episode, she isn't cognitive. Her brain chemistry is working against her body, and I don't feel that many people honestly understand what it's like to truly not have control over your mind and actions. The mind misfires, and while some medications can help, every person is different, and every person that lives with the disease goes though different periods and moods. One day you could be fine, but the next day you could be launched into a crushing depressive episode that lasts for months, or a euphoric high that feels great at first, until you become reckless, overwhelmed, and spin out of control. There is no set way, this disease changes, and it mimics other diseases. It includes horrible anxiety and panic attacks, dissociative disorder, OCD, paranoia, agoraphobia, extreme agitation and irritability, and social anxiety disorder, just to name a few.
Krista also suffers from Fibromyalgia which causes weakness in her arms and legs, pain in her joints, and extreme muscle fatigue and cramping. She also suffers from nerve pain and burning sensations in her extremities. The Epstein-Barr virus was found in her system, as well as an Endocrine disorder called Pseudoacanthosis Nigricans.
In 2007, through a tragic loss of a grandchild, we found out that we have a genetic mutation in our family. This is called Factor II Mutation. Essentially, it makes our blood hypercouagulative, making the family very susceptible to blood clots. Krista has two copies of the mutation in her blood. This means that any treatment she was going through for her Endometriosis, PCOS, etc, had to be halted, as she can no longer be treated with any form of hormones. Having a blood clotting disorder like this can be very dangerous, and the two copies that Krista carries is even more life threatening.
Life for Krista has been a series of obstacles, but I've watched her fight and try time and time again, through tears and pain and times when she can't function and she gets frustrated or feels so low, and she just wants the pain to end. She still can pick her head up and say that she has been blessed with good people in her life, a strong faith in God, and she is grateful. Her father and I, and her sisters and friends have helped Krista as much as we have been able to. At the moment, due to our own health problems and troubles, as well as hers, our finances have been stretched to the breaking point. As you can imagine, the medical costs through all these years has been a real struggle.
Krista has tried to make her own way. She has worked many jobs, since the age of 16, but she has never been able to maintain a steady job. I'm sure you can imagine that most employers do not keep what they consider to be "unreliable" employees around. The numerous times that she has had to call in sick, or have surgery, or been in the hospital, have all contributed to her losing many jobs. She decided to try and go back to school and she became an LMT. However, the work has started to become too much for her body to handle. She can't sustain herself on the small amount of work she had been doing.
Krista has filed for disability, but she was denied. She has had to hire lawyers to fight and appeal, but this process takes a very long time. She is also facing another expensive surgery to help ease her Endometriosis. Her father and I are trying to do all we can to continue to help her, but my husband had a heart attack a few years ago, and his health has not been the same either. We are running on empty ourselves. We are desperate to try and find a way to help our daughter. She needs help with her medical costs, and personal living expenses. That is what the money will go towards.
As a mother, I can't tell you the pain and helplessness I feel when I know she is suffering and I can't help her. I wish that I could just take it all away from her. I wish that she could enjoy life, without sickness robbing her of her hopes and dreams. She was always my adventurous child. She always dreamed of traveling. She is also a humanitarian, and has a strong sense of empathy because she has been through it, she understands. She is so very loving and compassionate. It breaks my heart to see her suffering, if I could, I would do anything to ease her pain, and her feelings of worthlessness; feeling like she is nothing but a burden. She is not a burden. She is a beautiful soul. I can only pray and ask God to help take care of my child, and our family. This is something I didn’t think I would have to do, but I know that there are good people out there, and it would mean everything to me and my family if anyone would be able to help in any way they can. Any amount is life saving, truly. Thank you from the bottom of my heart, and God bless you.
*When this fund went from inception to reality, Krista wanted to make sure that two organizations that are near and dear to her heart were also included. These organizations represent the millions of people out there that like Krista, suffer everyday from disabilities that are naked to the eye, but are completely devastating to their lives. www.projectsemicolon.com and www.invisibledisabilities.org
Above all, know that you do not have to suffer in silence. YOU ARE NOT ALONE. There is help.
Sincerely,
Toni Linares
