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For All of those Who have been told to Give Up or Quit
Hello,
I am still trying to formulate all of the good that has happened lately, especially last Thursday. To me, that is going to be considered the day when my life will truly begin.
I have been going through a very tough time lately. My flares have been out of control. I even had a week where I had to fight for treatment because the pain was so bad. I kept being told 'there is nothing more we can do for you.' Kind of a scary thing to be told at 24. Felt like my life was ending, and I had no choice but to give up. Luckily, doing research has paid off, because I was always one step ahead of the doctor, and mentioned an instill I believed may help. She looked into her IC things and found one, which is mentioned below. Luckily I tried it because it is the first instill that actually gave immediate relief, and I don't need to re-cath! I can just void the solution normally. I found out with my doctor that she is not giving up on me, just reaching the end of her knowledge and what she does in her practice. I am on every kind of medication, so that does not help, and have tried many instillations. I am going to see another doctor for another opinion on what to do if my instill stops working, etc.
I have been trying to get back into the mode with work, and grad school and doing what I can. I have missed weeks at a time, but I have always felt I had support. I do research, and get paid to go to graduate school, so I am lucky. Well when things had been very rough lately I made sure to message someone on my committee, and he said that he had some ideas. I was told by him and my advisor that we would meet during the week. I was nervous I would be told something terrible, or have a detailed discussion, but it was much better. They have put a pause on my written exams (need to pass 5 in 20 tries), I have passed 4 and have 7 tries. So I will not take the rest of my exams until I am healthy. They had to really pull some strings and go out on a limb to get that to happen. I could not believe it. Another thing, is that they want me to take time off, not work alone (due to medications and being a chemist), and not work more than a few hours a day (if that). Also, they would like me to be stable by August. So they are giving me several months to do what I need to do to make myself healthy. If that means going home for a few weeks, then do it, and that gives me time to work on other things at home also. Also, the director of the chemistry department will be paying my stipend over the summer so I do not have to teach and can just relax, do research (if doing better), and do what I need. They believe in me and know I have done wonderful work before, and would like me to continue it.
I am not giving up. I know this is what is right, and am not leaving until I have the letters P H D after my name. I could not believe the support I have received. It is truly amazing. They know I will not give up and that I am a hard working and passionate person. Not many people with this disorder get that kind of support, but it is out there.
Just felt like telling this story. Hopefully I continue feeling better, and it will make me do better in the end.
Erin
I am still trying to formulate all of the good that has happened lately, especially last Thursday. To me, that is going to be considered the day when my life will truly begin.
I have been going through a very tough time lately. My flares have been out of control. I even had a week where I had to fight for treatment because the pain was so bad. I kept being told 'there is nothing more we can do for you.' Kind of a scary thing to be told at 24. Felt like my life was ending, and I had no choice but to give up. Luckily, doing research has paid off, because I was always one step ahead of the doctor, and mentioned an instill I believed may help. She looked into her IC things and found one, which is mentioned below. Luckily I tried it because it is the first instill that actually gave immediate relief, and I don't need to re-cath! I can just void the solution normally. I found out with my doctor that she is not giving up on me, just reaching the end of her knowledge and what she does in her practice. I am on every kind of medication, so that does not help, and have tried many instillations. I am going to see another doctor for another opinion on what to do if my instill stops working, etc.
I have been trying to get back into the mode with work, and grad school and doing what I can. I have missed weeks at a time, but I have always felt I had support. I do research, and get paid to go to graduate school, so I am lucky. Well when things had been very rough lately I made sure to message someone on my committee, and he said that he had some ideas. I was told by him and my advisor that we would meet during the week. I was nervous I would be told something terrible, or have a detailed discussion, but it was much better. They have put a pause on my written exams (need to pass 5 in 20 tries), I have passed 4 and have 7 tries. So I will not take the rest of my exams until I am healthy. They had to really pull some strings and go out on a limb to get that to happen. I could not believe it. Another thing, is that they want me to take time off, not work alone (due to medications and being a chemist), and not work more than a few hours a day (if that). Also, they would like me to be stable by August. So they are giving me several months to do what I need to do to make myself healthy. If that means going home for a few weeks, then do it, and that gives me time to work on other things at home also. Also, the director of the chemistry department will be paying my stipend over the summer so I do not have to teach and can just relax, do research (if doing better), and do what I need. They believe in me and know I have done wonderful work before, and would like me to continue it.
I am not giving up. I know this is what is right, and am not leaving until I have the letters P H D after my name. I could not believe the support I have received. It is truly amazing. They know I will not give up and that I am a hard working and passionate person. Not many people with this disorder get that kind of support, but it is out there.
Just felt like telling this story. Hopefully I continue feeling better, and it will make me do better in the end.
Erin
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