I Might Have A WTF??!!!!!
So I've been absent from the scene mostly for the last week. I've been very, very sick - more so than usual. Went to Chapel Hill to see the Chief Rheumatology doc (love her) and here's where the story gets frightening:
First stop on my visit was to have a Bone Density Scan. Lovely changes to this in the past 10 years, but that's a whole other diatribe. Anyway - do that and then go see the WOMAN (heh.. not the Man!).
So first Dooley checks my horribly swollen knee that's been bothering me for weeks. I have extreme tendonitis. And bonus it's not RA related! yay - nope it's just the lupus. She gave me these nifty pain strips to apply to the tendon (12 hrs on/12 hrs off).
Then she checks my left hand. My pink and third finger are numb, extends down palm to that side of my wrist. You can basically stick a pin there - no pain. Turns out I have somewhere b/t my elbow and wrist - pinched a nerve. Lovely *rolls eyes*
Now onto my headaches. Over the summer I can count the days on one hand where I have had no headache. So, it's been worrying me. Dooley starts examining my eyes. She frowns. Checks again. Then stammers out this really long word that starts with S (I think). Okay from her expression and the sound of that word, I begin to feel panic. She tells me that she thinks she sees edema in my eyes! LIKE WTF -- I didn't know that was possible. Dooley tells me that I have most of the risk factors of getting whatver it was called especially b/c of my lupus. NOW, for 10 years I've worried that someday my lupus would reach my brain and one of the major tells is the eyes. So, my panic starts going into a good burn.
Dooley calls up to the 2nd floor of where I'm at -- Eye Clinic - one of the state's best is upstairs. I go and have the MOST thorough eye exam I've ever had. I saw two opthamologists. One was a woman from Afghhanistan who came to America at 15, but was a refuge in Germany for a while. *Hey diabola79 kudos to your country's wonderful hosting of refugees!*
Anyhoo... so the major optha guy walks in. First words were, "You don't have a brain tumor from what we can see." I'm like WTF!!!!!
The strange word again -- seems that I have 7 of 7 of the common risk factors that patients who have this have. (sorry for weird wording) Anyway, lupus is the main factor. Check. History of Steroid use (Pred/Plaquanil) Check. Overweight. (check, but losing) Treated with cytoxan (Major checkage). High blood pressure (check). Diabetes (check, tho medication induced). And one other.
PANICKY doesn't describe. Why did they think - brain tumor? Then they said wasn't edema she saw - she didn't the best look. Eyes are fine. No intercranial swelling they can see from my eyes.
BUT here's sort of the funnies:
(1) So the Big Honcho grabs that damn light thing again, looks into the backs of my eyes and says, "You're blonde. You're very, very blonde. You're a true blonde." I say, "You couldn't tell that by my hair color, which is not dyed btw?" He tells me that the backs of the eyes tell a person's true coloring. Dark complexion, dark eyes - darker in the backs; medium is medium colored; but a person who is a true blonde (like me) very light in the back - goes with the vampire like pale skin, blue eyes, and blonde hair.
You learn something everyday.
(2) I'm a true weirdo! It's been confirmed! So then he tells me that I have small optic nerves - which in itself is not something weird. What's weird is that I have these small optic nerve(s) and I am near-sighted. VERY RARE.
lol
So I ask if the small nerves would be more prone to whatmacallit and he says no.
NOW - while from what they saw - no indication of brain tumor/swelling - but eyes are rarely the reason for headaches. Still he recommends me having an MRI to completely rule it out. (That will be later in the month).
With a somewhat lighter heart, I go back downstairs to Dooley --- she gives me scrips, etc. Wants to see me in a month -- normally we go every 3 months to her. So I'm alarmed. Most labwork came back okay, but not all was in yet. Kidneys still not great, but getting better.
We started at the hospital at 11:30AM -- we didn't leave until 6:30PM.
Mom and I were going to see my uncle Don who just had major open heart surgery. Yes, my dad's other brother. (see http://www.livejournal.com/users/oracleholly/27671.html) Right as we are going in to a restaurant to eat (since hadn't eaten since 10am) the cell rings - Don's wife Marilyn's mom passed away. Ms. Kirpatrick was the most gentle, kind woman you'd ever be fortunate to meet. I will miss her. So semi-change of plans. Met them somewhere else. I was glad that I was able to get my Aunt Marilyn to laugh some. She was so distraught, "I can't believe I'm sitting in my mother's house and she's not alive."
Long story -- we left home at 7:30 in the morning, boarded the doggies, and didn't get home til 11:30 pm.
LONG DAY, Rollercoaster of emotions.
Now, I'm playing catch up. Read most of the summer_of_spike entries, now have friends and verse stories to read.
Special Note1: To Dan and Jesse - I know you guys have been majorly worried about me. I'm sorry I didn't tell you what was going on. I was feeling so badly, I didn't want to drag you guys down with me. To Stephi - thanks for basically kicking me in the ass and telling me not to keep things to myself. Love ya hon.
Special Note2: To those who I beta - thank you for your patience. I plan on having everything back to everybody by Friday.
Plus, I have 2, count them 2, chaps of Spike's Way that should be posted on Friday as well.
Take care!
First stop on my visit was to have a Bone Density Scan. Lovely changes to this in the past 10 years, but that's a whole other diatribe. Anyway - do that and then go see the WOMAN (heh.. not the Man!).
So first Dooley checks my horribly swollen knee that's been bothering me for weeks. I have extreme tendonitis. And bonus it's not RA related! yay - nope it's just the lupus. She gave me these nifty pain strips to apply to the tendon (12 hrs on/12 hrs off).
Then she checks my left hand. My pink and third finger are numb, extends down palm to that side of my wrist. You can basically stick a pin there - no pain. Turns out I have somewhere b/t my elbow and wrist - pinched a nerve. Lovely *rolls eyes*
Now onto my headaches. Over the summer I can count the days on one hand where I have had no headache. So, it's been worrying me. Dooley starts examining my eyes. She frowns. Checks again. Then stammers out this really long word that starts with S (I think). Okay from her expression and the sound of that word, I begin to feel panic. She tells me that she thinks she sees edema in my eyes! LIKE WTF -- I didn't know that was possible. Dooley tells me that I have most of the risk factors of getting whatver it was called especially b/c of my lupus. NOW, for 10 years I've worried that someday my lupus would reach my brain and one of the major tells is the eyes. So, my panic starts going into a good burn.
Dooley calls up to the 2nd floor of where I'm at -- Eye Clinic - one of the state's best is upstairs. I go and have the MOST thorough eye exam I've ever had. I saw two opthamologists. One was a woman from Afghhanistan who came to America at 15, but was a refuge in Germany for a while. *Hey diabola79 kudos to your country's wonderful hosting of refugees!*
Anyhoo... so the major optha guy walks in. First words were, "You don't have a brain tumor from what we can see." I'm like WTF!!!!!
The strange word again -- seems that I have 7 of 7 of the common risk factors that patients who have this have. (sorry for weird wording) Anyway, lupus is the main factor. Check. History of Steroid use (Pred/Plaquanil) Check. Overweight. (check, but losing) Treated with cytoxan (Major checkage). High blood pressure (check). Diabetes (check, tho medication induced). And one other.
PANICKY doesn't describe. Why did they think - brain tumor? Then they said wasn't edema she saw - she didn't the best look. Eyes are fine. No intercranial swelling they can see from my eyes.
BUT here's sort of the funnies:
(1) So the Big Honcho grabs that damn light thing again, looks into the backs of my eyes and says, "You're blonde. You're very, very blonde. You're a true blonde." I say, "You couldn't tell that by my hair color, which is not dyed btw?" He tells me that the backs of the eyes tell a person's true coloring. Dark complexion, dark eyes - darker in the backs; medium is medium colored; but a person who is a true blonde (like me) very light in the back - goes with the vampire like pale skin, blue eyes, and blonde hair.
You learn something everyday.
(2) I'm a true weirdo! It's been confirmed! So then he tells me that I have small optic nerves - which in itself is not something weird. What's weird is that I have these small optic nerve(s) and I am near-sighted. VERY RARE.
lol
So I ask if the small nerves would be more prone to whatmacallit and he says no.
NOW - while from what they saw - no indication of brain tumor/swelling - but eyes are rarely the reason for headaches. Still he recommends me having an MRI to completely rule it out. (That will be later in the month).
With a somewhat lighter heart, I go back downstairs to Dooley --- she gives me scrips, etc. Wants to see me in a month -- normally we go every 3 months to her. So I'm alarmed. Most labwork came back okay, but not all was in yet. Kidneys still not great, but getting better.
We started at the hospital at 11:30AM -- we didn't leave until 6:30PM.
Mom and I were going to see my uncle Don who just had major open heart surgery. Yes, my dad's other brother. (see http://www.livejournal.com/users/oracleholly/27671.html) Right as we are going in to a restaurant to eat (since hadn't eaten since 10am) the cell rings - Don's wife Marilyn's mom passed away. Ms. Kirpatrick was the most gentle, kind woman you'd ever be fortunate to meet. I will miss her. So semi-change of plans. Met them somewhere else. I was glad that I was able to get my Aunt Marilyn to laugh some. She was so distraught, "I can't believe I'm sitting in my mother's house and she's not alive."
Long story -- we left home at 7:30 in the morning, boarded the doggies, and didn't get home til 11:30 pm.
LONG DAY, Rollercoaster of emotions.
Now, I'm playing catch up. Read most of the summer_of_spike entries, now have friends and verse stories to read.
Special Note1: To Dan and Jesse - I know you guys have been majorly worried about me. I'm sorry I didn't tell you what was going on. I was feeling so badly, I didn't want to drag you guys down with me. To Stephi - thanks for basically kicking me in the ass and telling me not to keep things to myself. Love ya hon.
Special Note2: To those who I beta - thank you for your patience. I plan on having everything back to everybody by Friday.
Plus, I have 2, count them 2, chaps of Spike's Way that should be posted on Friday as well.
Take care!