Thursday, June 30, 2011
No closer in close to 3 months
All we have learned is that I am...wait for it...perfectly fine. Except that I'm overweight. Way to go! Do you think we don't own a scale, or do you think I am just stupid? I mean really. Do you think that we aren't already trying to address that, or are we just going on as normal? We are waiting for my urine to turn bright red again. Thing is, it's hard to tell the color by a small sample diluted down so I can find a bright red sample. It's crazy. We are "treating me symptomatically" but my symptoms are being treated in a really crappy fashion. Day by day the pain isn't remotely close to nothing. About a 5 every day. Down from 8. Definately not around acceptable. Sleep isn't there either, but it comes with the pain. A month ago I was under the direct care of 4 doctors. After follow ups, I am now under the care of 2. One I have another appt with next week, and he will be gone, providing everything is normal; since it's cardiology, I hope they would have told us by now if it wasn't. The second is the one who is "treating me symptomatically" and I think he has no other ideas at all.
Friday, May 20, 2011
Me Caveman
I apologize in advance for the caveman like sentince structure.
Okay, so now my Neurontin is going up. It's creating the same ol insomnia that we all know and love. Hopefully it will fix pain better. Last night, I was up till 6 am. When my mom's alarm went off. I worked for most of that time. Got loads of stuff done.
The electrodes from my heart monitor decided to cut my stomach, so I get to deal with that one now. It's pretty deep for coming from foam and paper. I got the sensitive skin electrodes, but I still take them off and clean the skin every day to prevent irritation. If they need to send me more, then they do.
I think I can sleep now. Night.
Okay, so now my Neurontin is going up. It's creating the same ol insomnia that we all know and love. Hopefully it will fix pain better. Last night, I was up till 6 am. When my mom's alarm went off. I worked for most of that time. Got loads of stuff done.
The electrodes from my heart monitor decided to cut my stomach, so I get to deal with that one now. It's pretty deep for coming from foam and paper. I got the sensitive skin electrodes, but I still take them off and clean the skin every day to prevent irritation. If they need to send me more, then they do.
I think I can sleep now. Night.
Friday, May 13, 2011
Fun days
So it's been a long time since my last entry, and a lot has changed. Saw a geneticist. Saw my rheumy and had an MRI (I'll let you guess the outcome of that one). Saw a cardiologist. Saw an endocrinologist. Ruled out loads of diseases (lupus, Wilson's, etc.) went on heart monitor (I hate electrodes.) Oh, yeah, and the wonderful weather decided to build up to a huge thunderstorm. I hate them. So much. They make me hurt all over!
Took AP tests, think I did okay.
Took AP tests, think I did okay.
Wednesday, April 13, 2011
Late night comedy
Ive been watching more than I want to. Which means, more pain caused insomnia! Of course. Getting more blood drawn, and if it's normal, then I'll get an MRI of some muscles to see inflammation, so we can find a good place for a muscle biopsy. Not endocrine. My doctor actually thanked me when I told him the psychiatrist said it wasn't psychiatric. So, sounds like we may be onto something!
Thursday, March 31, 2011
Update after endocrinologist
I saw my endo last Friday, and they screened me for Cushing's by having me do a 24 hour urine test. It just so happened my brother was at a science Olympiad competition the next day, so it was just me all day. So I laid around the house, and collected my pee in a jug. Lovely. I didn't want to go because it would be a long day and I wouldn't like seeing former teammates compete, me not being able to be there because of this demon that lives inside of me. The demon that is the undiagnosed condition.
So, I'm flaring this week. Printed off countdown banners last Sunday for the tax office I help my dad at on Sundays, and all of that (an atypical amount of work. Usually it's just answer phones and do homework for 5 hours) I think did it. So I'll just chill here and watch South Park. I love that show. Kyle just punched Cartman's arm and he ran off screaming. That reminds me of when people poke my arm.
At least spring break is next week. I asked my mom if we could go down to Florida, get wasted, then arrested and her response was "you don't have enough energy". Typical response. In case the simple sentince structure is misleading you, I'm on Skelaxin.
So, I'm flaring this week. Printed off countdown banners last Sunday for the tax office I help my dad at on Sundays, and all of that (an atypical amount of work. Usually it's just answer phones and do homework for 5 hours) I think did it. So I'll just chill here and watch South Park. I love that show. Kyle just punched Cartman's arm and he ran off screaming. That reminds me of when people poke my arm.
At least spring break is next week. I asked my mom if we could go down to Florida, get wasted, then arrested and her response was "you don't have enough energy". Typical response. In case the simple sentince structure is misleading you, I'm on Skelaxin.
Saturday, March 12, 2011
Response to Feisty Kitten
This is in response to Feisty Kitten.
I get the "blood is thicker than water" thing. Although what my aunt did to me a few years ago was not on the same planet as almost killing my mom, it is still traumatizing to me.
A few years ago, I got very sick. 2 weeks of a 104 degree fever, followed by two weeks of vomiting my guts out. During the fevers, my aunt would call my mom and tell her to send me to school, that I was exaggerating and faking. One- how the hell do you fake a 104 degree fever and two- they won't let you to school with a fever. We tried to explain two to her, but she couldn't get it through her thick head. Then, in the second week of vomiting, she called and talked to ME. She asked me how I felt, and my response was "pretty crappy". This sent her on a tirade of "you will die if you think like that". To this day, every time somebody asks how I feel, that scenario runs through my head, and it makes me say "fine" or "good" every time. Even with non-judgmental people. My parents get an honest answer. Nobody else does. I think I can forgive her for what she did, but she has harassed me off of facebook, which was my decision. I unfriended and blocked her like my dad said when she began harassing my parents and telling them that they were teaching me to run away when times get tough (they taught me not to take shit from others). Now, I have loads of relatives I cannot contact. Friends I can't contact. All because she couldn't stop harassing me. And she guilted my grandmother into taking responsibility for her actions. She clearly sees no boundaries. My dad and his brother think before speaking. My dads sister and brother speak, then might think. With the aunt in question, I dont think she ever thinks. Since I got sick, FB has been my social lifeline. Now I have to recede into my own type of hiding. I saw her last Sunday. I would not hug her. I would not talk to her. I just glared. I might be able to forgive. It's going to be on my own schedule, though. Yes she is family. I'm not taking this from anybody though. She has never had the courage to apologize to my face for all she has done. She just keeps doing it. Hopefully by Easter things will calm down. I'm not doing this anymore just because she is family.
I get the "blood is thicker than water" thing. Although what my aunt did to me a few years ago was not on the same planet as almost killing my mom, it is still traumatizing to me.
A few years ago, I got very sick. 2 weeks of a 104 degree fever, followed by two weeks of vomiting my guts out. During the fevers, my aunt would call my mom and tell her to send me to school, that I was exaggerating and faking. One- how the hell do you fake a 104 degree fever and two- they won't let you to school with a fever. We tried to explain two to her, but she couldn't get it through her thick head. Then, in the second week of vomiting, she called and talked to ME. She asked me how I felt, and my response was "pretty crappy". This sent her on a tirade of "you will die if you think like that". To this day, every time somebody asks how I feel, that scenario runs through my head, and it makes me say "fine" or "good" every time. Even with non-judgmental people. My parents get an honest answer. Nobody else does. I think I can forgive her for what she did, but she has harassed me off of facebook, which was my decision. I unfriended and blocked her like my dad said when she began harassing my parents and telling them that they were teaching me to run away when times get tough (they taught me not to take shit from others). Now, I have loads of relatives I cannot contact. Friends I can't contact. All because she couldn't stop harassing me. And she guilted my grandmother into taking responsibility for her actions. She clearly sees no boundaries. My dad and his brother think before speaking. My dads sister and brother speak, then might think. With the aunt in question, I dont think she ever thinks. Since I got sick, FB has been my social lifeline. Now I have to recede into my own type of hiding. I saw her last Sunday. I would not hug her. I would not talk to her. I just glared. I might be able to forgive. It's going to be on my own schedule, though. Yes she is family. I'm not taking this from anybody though. She has never had the courage to apologize to my face for all she has done. She just keeps doing it. Hopefully by Easter things will calm down. I'm not doing this anymore just because she is family.
Tuesday, March 8, 2011
New life- mini update
So I see an endocrinologist at the end of the month. I also see my PCP tomorrow to see if he can adjust my pain meds. I am having issues typing and I think my neurontin is becoming less effective.
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