kmendsley
Distinguished member
- Joined
- Feb 19, 2010
- Messages
- 434
- Reason
- Other
- Diagnosis
- 00/0000
- Country
- US
- State
- CA
- City
- Highland
Ok I probably get this more than most...because my family simply does not accept the fact that I have a terminal disease...but I am sick and tired of hearing it. "You need to drink more water, You need to eat more at meals." "If you just took in more protein in your diet you would be fine...here drink gatorade...this will make all your problems go away." NO IT WON'T! If it isn't hard enough that I have to convince every new dr. I see that I have the freaking disease when I see them, how bad is it when your own family is convinced that you are just being lazy and un-nutritious. They refuse to see what is in front of them and grasp at whatever they can to cause the problems.
For example, yesterday was a bad day. I got up to go to work and passed right out on the bathrooom floor in front of both of my parents...kind of hard to ignore that one. So I got taken to urgent care later in the afternoon after being force fed in the morning a banana for potassium and pedialyte...as my mother was convinced this had to be the issue. I insisted on going in to urgent care and that she come with. So I get there and get a new dr. She looked at all my records, including vitals...my bp was 90/50...that is why I passed out. So anyway, she did a quick assesment on me for general neuro...failed it all. It helped I think that my mom was there watching me horrendously fail the finger to nose test and have extremely brisk reflexes...etc. Well after the test, dr. said low bp is the least of my worries and I needed to see a neurologist like yesterday. (let me explain that I have had a yes, no, and hesitant yes diagnosis...so insurance is taking there sweet time and appt.s are hard to come by...as I am sure they would like me off of the insurance by the time I turn 25 and then agree I have the disease.
So anyway...dr. was real good and sent emergency stat referral to neuro for me. But as we sit there waiting, what does my mom do but say every possible thing she can think of as to why I could not pass these neuro test. quotes from my mom "She has low bp, well she had shingles couldn't that be it, she has had anemia, I think she is stressed with her jobs, ...on and on it went." Thank you dr. for listening politely and ignoring every statement she said. Anyway...I am sick of it...what is it going to take...me dying and it saying death by ALS? seriously, tired of it. Sorry, just needed to rant.
For example, yesterday was a bad day. I got up to go to work and passed right out on the bathrooom floor in front of both of my parents...kind of hard to ignore that one. So I got taken to urgent care later in the afternoon after being force fed in the morning a banana for potassium and pedialyte...as my mother was convinced this had to be the issue. I insisted on going in to urgent care and that she come with. So I get there and get a new dr. She looked at all my records, including vitals...my bp was 90/50...that is why I passed out. So anyway, she did a quick assesment on me for general neuro...failed it all. It helped I think that my mom was there watching me horrendously fail the finger to nose test and have extremely brisk reflexes...etc. Well after the test, dr. said low bp is the least of my worries and I needed to see a neurologist like yesterday. (let me explain that I have had a yes, no, and hesitant yes diagnosis...so insurance is taking there sweet time and appt.s are hard to come by...as I am sure they would like me off of the insurance by the time I turn 25 and then agree I have the disease.
So anyway...dr. was real good and sent emergency stat referral to neuro for me. But as we sit there waiting, what does my mom do but say every possible thing she can think of as to why I could not pass these neuro test. quotes from my mom "She has low bp, well she had shingles couldn't that be it, she has had anemia, I think she is stressed with her jobs, ...on and on it went." Thank you dr. for listening politely and ignoring every statement she said. Anyway...I am sick of it...what is it going to take...me dying and it saying death by ALS? seriously, tired of it. Sorry, just needed to rant.