Share Your Story

Email me your personal experience with Lupus and I'll post it here.

Brandon's Story

I am from Piqua and my mother, Mitzi Ohl, has Lupus and has been diagnosed for 22 years. The lupus came about during my birth at which point it forcibly aborted me from my mothers womb at six months. I barely survived the birth and was in danger for my life for the first years of it. My sister was born three years after myself and the lupus attacked her heart when she was in the womb. she ended up with almost complete heartblock and has been on a pacemaker since birth.

The lupus caused my family to fall into unescapable financial debt from which we have never recovered. My family is still in debt from my birth. Not only that but the emotional, physical, and societal pain the disease has caused my family cannot be measured. I am so glad that you are doing this and want to congratulate you for bringing awareness to this crippling disease. My name is Brandon and I currently attend college in Athens, OH... my mother Mitzi has Lupus... my sister is Elaine, whom they are beginning to believe has Lupus or early Lupus signs, and my father is Michael Ohl. You are awesome god bless you. Thanks and I am glad you found me, it is nice to know something like this is going on in my own backyard.. :)

Thank you, Brandon, for sharing your story.

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Mike's Story

Hello my name is Mike Bay and I have Lupus. I was diagnosed in 2003 with SLE and started treatment on Cytoxan shortly after my diagnosis. My doctor told me I had it for at least two years before I was diagnosed with it. I was, at the time, looking for work and was doing alright, health wise, then I started getting sick and sicker every day. My mind was alright, but my body wasn’t up to the tasks I was trying to do. I had been looking for work for about 18 months, at the time. I had no insurance or any means of income at the time either and was living with my parents. I had many, many tests run on me to try and figure out what might be wrong, but all of them came back negative. I had so many blood draws I swore they were trying to make another me. *LOL* I almost was sent to a shrink thinking it might be something mental, but my doctor thought it would be best to rule out anything physical first eventually ended up being sent to a clinic in Indiana where they started the process of finding out what was wrong with me. My normal doctor didn’t have a clue, and considering how many men are diagnosed with lupus I can understand that. I mean how many men is a doctor, in a smaller population going to see in his career diagnosed with lupus?? At the time I was trying everything I, and my parents, could think of to get some kind of aid for me. I had applied for Medicaid several times by this point and had been denied. I saw one doctor who was going to do a kidney biopsy on me, but then a week before it was supposed to take place he cancelled because I had no insurance to cover the procedure. A week after that I was in the emergency room at the local hospital with a 103°+ temperature and feeling like hell. That is when I met the man who has taken care of me ever since for my lupus and the man who saved my life, in my opinion. He did everything that was needed to be done and I was, and have been, thankful for him and his skills ever since them. At the time I was immediately put on several medications that I should have been put on before them by the other doctor. But that is not relevant anymore. The day I was put into the hospital I was supposed to go to the Social Security office and apply for SSI. I was very lucky in that my parents could be my advocates in that for me. At that point I was in a very serious state of decline in my health. I had joint aches in my knees, hands and wrists. I felt tired all of the time and had next to no appetite to speak of and had lost about 50 pounds at this point. When I was diagnosed I was just happy to find out what I had, to say the least. Then I started finding out more about it and how they were going to treat me and then it finally hit me how serious this was and how sick I was at the time. I know now that I will be dealing with this disease for the rest of my life and, at this time, there is no cure for it. But I take it one day at a time now and do the best I can. I am still out of work, at this time, but I haven’t given up on life. This is just a trial in life I am having to deal with, along with many other people in this same situation. I do have some “side effects” from the lupus though. I have had two blood clots, one in each leg. The first one was about 2 years before my diagnosis, and we all thought it was an anomaly and went on with life. At the time none of us knew that it was the first manifestation of the lupus, for me. The second one happened about a year and a half after my diagnosis. The funny thing is I felt the same exact symptoms the second time just in the other leg. This time around I didn’t mess around and got it checked out immediately. I have been on blood thinners ever since and I don’t mind it. It is just something I have to do and I do it. Because of this fact I have found it harder, and the fact I have been out of work so long, to find employment in the world right now. I have a degree in Mechanical/CADD drafting from Wright State University and I have taken classes over at Apollo Career Center in Network Systems Specialist. But in this area there isn’t too much work out there for me, or anyone else for that matter, and the fact I have the DVT in my legs doesn’t help matter any either. I am trying to get back on SSI at this time and I am on state disability right now. Hopefully I will get on SSI, again. I am not trying to abuse the system here; I am just looking for a helping hand up right now. I would love to go back into the work world and be a productive member of society, but right now there are not too many options for someone in my position right now. I apologize if this seems like, or sounds, a depressing letter; that is not what I mean it to be. I do have depression here though and I am working through it through therapy and talking with people I know and stuff. I just want all of you, who read this, know that you are not alone out there. That is one thing I have learned and that is something that can really help in knowing. Knowing that there are others out there who know what you are going through and can relate makes a world of difference. I thank you for allowing me this time to let you know about myself and what I have been going through and I wish all of you the best this world has to offer all of us.

Peace and Love,

Mike

"May we meet as friends, forever"

Thank you Mike, for sharing your story.


Wednesday, September 08, 2010
Homepage Our Mission About Lupus To Your Health Photos Donations Our Sponsors Contact Us Share Your Story Spread The Word Media Support	Share Your Story Email me your personal experience with Lupus and I'll post it here. Brandon's Story I am from Piqua and my mother, Mitzi Ohl, has Lupus and has been diagnosed for 22 years. The lupus came about during my birth at which point it forcibly aborted me from my mothers womb at six months. I barely survived the birth and was in danger for my life for the first years of it. My sister was born three years after myself and the lupus attacked her heart when she was in the womb. she ended up with almost complete heartblock and has been on a pacemaker since birth. The lupus caused my family to fall into unescapable financial debt from which we have never recovered. My family is still in debt from my birth. Not only that but the emotional, physical, and societal pain the disease has caused my family cannot be measured. I am so glad that you are doing this and want to congratulate you for bringing awareness to this crippling disease. My name is Brandon and I currently attend college in Athens, OH... my mother Mitzi has Lupus... my sister is Elaine, whom they are beginning to believe has Lupus or early Lupus signs, and my father is Michael Ohl. You are awesome god bless you. Thanks and I am glad you found me, it is nice to know something like this is going on in my own backyard.. :) Thank you, Brandon, for sharing your story. ---------------------------------------------------------------------------------------------------------- Mike's Story Hello my name is Mike Bay and I have Lupus. I was diagnosed in 2003 with SLE and started treatment on Cytoxan shortly after my diagnosis. My doctor told me I had it for at least two years before I was diagnosed with it. I was, at the time, looking for work and was doing alright, health wise, then I started getting sick and sicker every day. My mind was alright, but my body wasn’t up to the tasks I was trying to do. I had been looking for work for about 18 months, at the time. I had no insurance or any means of income at the time either and was living with my parents. I had many, many tests run on me to try and figure out what might be wrong, but all of them came back negative. I had so many blood draws I swore they were trying to make another me. LOL I almost was sent to a shrink thinking it might be something mental, but my doctor thought it would be best to rule out anything physical first eventually ended up being sent to a clinic in Indiana where they started the process of finding out what was wrong with me. My normal doctor didn’t have a clue, and considering how many men are diagnosed with lupus I can understand that. I mean how many men is a doctor, in a smaller population going to see in his career diagnosed with lupus?? At the time I was trying everything I, and my parents, could think of to get some kind of aid for me. I had applied for Medicaid several times by this point and had been denied. I saw one doctor who was going to do a kidney biopsy on me, but then a week before it was supposed to take place he cancelled because I had no insurance to cover the procedure. A week after that I was in the emergency room at the local hospital with a 103°+ temperature and feeling like hell. That is when I met the man who has taken care of me ever since for my lupus and the man who saved my life, in my opinion. He did everything that was needed to be done and I was, and have been, thankful for him and his skills ever since them. At the time I was immediately put on several medications that I should have been put on before them by the other doctor. But that is not relevant anymore. The day I was put into the hospital I was supposed to go to the Social Security office and apply for SSI. I was very lucky in that my parents could be my advocates in that for me. At that point I was in a very serious state of decline in my health. I had joint aches in my knees, hands and wrists. I felt tired all of the time and had next to no appetite to speak of and had lost about 50 pounds at this point. When I was diagnosed I was just happy to find out what I had, to say the least. Then I started finding out more about it and how they were going to treat me and then it finally hit me how serious this was and how sick I was at the time. I know now that I will be dealing with this disease for the rest of my life and, at this time, there is no cure for it. But I take it one day at a time now and do the best I can. I am still out of work, at this time, but I haven’t given up on life. This is just a trial in life I am having to deal with, along with many other people in this same situation. I do have some “side effects” from the lupus though. I have had two blood clots, one in each leg. The first one was about 2 years before my diagnosis, and we all thought it was an anomaly and went on with life. At the time none of us knew that it was the first manifestation of the lupus, for me. The second one happened about a year and a half after my diagnosis. The funny thing is I felt the same exact symptoms the second time just in the other leg. This time around I didn’t mess around and got it checked out immediately. I have been on blood thinners ever since and I don’t mind it. It is just something I have to do and I do it. Because of this fact I have found it harder, and the fact I have been out of work so long, to find employment in the world right now. I have a degree in Mechanical/CADD drafting from Wright State University and I have taken classes over at Apollo Career Center in Network Systems Specialist. But in this area there isn’t too much work out there for me, or anyone else for that matter, and the fact I have the DVT in my legs doesn’t help matter any either. I am trying to get back on SSI at this time and I am on state disability right now. Hopefully I will get on SSI, again. I am not trying to abuse the system here; I am just looking for a helping hand up right now. I would love to go back into the work world and be a productive member of society, but right now there are not too many options for someone in my position right now. I apologize if this seems like, or sounds, a depressing letter; that is not what I mean it to be. I do have depression here though and I am working through it through therapy and talking with people I know and stuff. I just want all of you, who read this, know that you are not alone out there. That is one thing I have learned and that is something that can really help in knowing. Knowing that there are others out there who know what you are going through and can relate makes a world of difference. I thank you for allowing me this time to let you know about myself and what I have been going through and I wish all of you the best this world has to offer all of us. Peace and Love, Mike "May we meet as friends, forever" Thank you Mike, for sharing your story.
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