Daniel, older member but just never on before...pretty long
Hello, my name is Daniel Pardo and well I think I have a unique story but we all know this "uniqueness" isn't all that great. I'm 19 years old and am currently attending Tulane University in New Orleans, LA. While I do not suffer from lupus myself I have seen the effects and felt the pain all the same as my mother has been battling the illness since 1995. It has been a very long and hard road for my family and I but we've been pushing through. My mother become mysteriously ill in 1995 when fluid began to fill her lungs and no one had any idea as to the cause. As time went on, fluid build up became a trend and for several years, every 3-4 months she would return to the hospital with the same issue. Other little problems arose, one instance was with damage to her heart and later on difficulties with her kidneys. Doctors were completely baffled and ran every test they could think of with no results. I'm not sure how they came to do it, eventually her doctors referred her to a rheumatologist where he began peicing together the peices of the puzzle and the diagnoses was made. After all the years of not having an idea what was going on we finally knew and had some relief but we then had more questions than before as we were clueless as to what Lupus and it's effects could mean. Soon we learned as her health began to detriorate even faster than before and her hospital stays became more frequent and sometimes for a month at a time unconsious breathing through a ventilator. It was hard for me as I was still young and having to deal with the fact that my mother was quickly slipping through my fingers but my mother has always been a strong woman and she passed that trait on to me. However, in 2005 I was hit the hardest at my graduation. You see, I have an older sister and only 2 years before she had graduated from Georgia Tech and my mother was fairly healthy and could walk on her own, in 2005 though, I was graduating from high school and she could no longer walk on her own due to pain caused from the deterioration of her cartlidge caused by the large amounts of steroids she had taken also, she had 2 discs ruptured in her spine which caused immense pain for her. I could see her face when walking across the stage and I saw pride and joy but I also saw two emotions that scared the hell out of me: Fear and doubt. See, by that time she had already had 2 times in the past year when she had almost died while in the hospital and she was becoming weaker and weaker. I was heartbroken but walked on with pride knowing I was one step closer to my goal of becoming a doctor/ researcher and finding a way to help my mother and also happy to know I had made another one of my mother's dreams come true. That summer I was preparing for college and ready to start the NROTC program at Tulane with the possibility of a full scholarship...that dream disappeared in a moment when I was in a severe accident that not only totaled my car but almost broke all of my spirits. I fought the entire summer to recover but I had injured my shoulder and my spirits were down. By July I was in doubt of my future but I decided to make a desperate venture and see if I could get a new grasp on things and possibly have some positive come from a very negative summer. I fly and stayed with a friend for about a month and had some of the greatest times of my life, I could not believe close friends could be so great and helpful, they were amazing and even though I arrived with the crappiest outlook possible I saw a new light. While I was there I saw my girlfriend at the time who had moved up there to go to college and she helped me even more, she was such an amazing woman but things just never worked out as there were many issues with unfaithfulness and other problems but thats a different story for a whole different place and time. So anyway, I ended up at Tulane, was in NROTC, proud and happy as hell. Then Katrina hit and boom, everything changed again. I was at home, no school to be known of as the city was flooded and full of doubt, my mother pushed me to go to school and I did, attended Steven's Institute of Technology in New Jersey. Had a decents semester but it was exhausting and by the time I returned to Tulane I just broke, I couldn't attend due to the worry about my mother, so much pressure from classes, ROTC, and then discovering that the money that was supposed to pay for the previous semester was squandered by my father leaving me with over $11,000 in debt. I went home and pulled myself together, and prepared for the summer when I planned to return to Tulane again. I finally returned agian in May and began my classes again with no idea what lay ahead. That month my mother had surgery on her back to repair the ruptured discs, my father completely left me on my own and I was now $20,000 in debt with Tulane and $9,000 in debt with Stevens...pretty bleak eh, I continued on into the fall semester and now Im still here at Tulane up to my neck in debt, mother being eaten away by Lupus and well hell...looking for any help in any way...from someone to talk to all the way to, well who knows, we'll see. Well I have to return to work but definitely going to have to visit here more often.
Daniel, I'm sorry you've been left trying to hold things together in a very tough situation. I'm not sure how you feel about your dad right now, but you might have some possible legal options if your dad spent money that he knew was yours. I would strongly suggest talking to the financial aid counselors at Tulane about your situation - there may be additional aid programs you are eligible for, and they should know something about your legal options for getting some of this money back. Is your older sister in a position to help you with things relating to your mom's care?
If there are specific questions we can answer for you about lupus, please feel free to ask. Unfortunately, in many ways lupus is just as hard on the family members as it is on the patients. There are other people on the forum dealing with lupus in a parent or child - hopefully they will be able to give you some suggestions on how to cope. It cnn't be easy to deal with your school and ROTC obligations and try to be with your mom at the same time. but remember you have to take care of yourself too - this much stress isn't good for anyone. Try to find time to spend with your friends - exercise and keep healthy, maybe talk to one of the counselors at school about all the stresses you are dealing with right now. And please continue to let us know how your mom is doing.
Hi Daniel :lol:
I cannot give you any better advise than Marycain has given you. So, I just wanted to let you know that you have also found friends here and we will be here to help you in any way that we can.
I know exactly how it feels to have to see a loved-one losing their health to this disease and slowly deteriorate right before your eyes. However, as a mother, I can tell you that, in spite of her illness and poor health, what she wants most in this world is for you to be happy, secure and on your way to making a good future for yourself. Honestly, that is one of the things that will make her the happiest. She already knows that you love her and that you would do anything in the world for her. She finds comfort in that, but she does want you to be happy and secure with a future - I imagine that is why she pushed you to continue with school.
I truly hope that you are able to find some help for your stress, as Marycain suggested, and some way to resolve the issue regarding your money. In the meantime, you may come to us for help, support, answers, information and just to be assured that you are not alone.
I wish you the very best
Peace and Blessings