Bad week. :/

[EmersonAilidh]

Bleh. Monday & Tuesday were just normal bad. Wednesday I had a photo shoot & the photographer kept telling me to push my hip out farther in certain shots & it kept popping & by the time I got home walking was no longer an option. Fell into a Laz-boy with a bowl of AilidhFriendly chili & slept for ten hours. Barely made it to school. Then Thursday I had my MSLT. Let me just relay the conversation that occurred at the vegan restaurant me, my mom, & my stepdad went to beforehand...

 

"Okay, I can't eat gluten. Do you guys have rice pasta?" ~ Me.

"Yes. Would you like toast with that?" ~ Waitress.

"Can't do bread." ~ Me.

"We have spelt bread." ~ Waitress.

"Is that gluten-free?" ~ Me.

"No." ~ Waitress.

"Well... then no." ~ Me.

 

I just thought it was funny. I never get mad at waitresses. They have hard jobs. But anyway. Got checked into the hospital, took them two hours to get all of the electrodes & other gear on, & then it was time to sleep. But my ear hurt. Now, we P.A.N.D.A.S. & Lyme kids tend to have pretty good pain tolerances. I don't whine everytime I scrape my knee. My. Ear. HURT. They told me it was normal & to try to ignore it. I woke up four times in the night. I haven't woken up more than twice in one night since the Narcoleptic symptoms started almost two years ago. I kept saying that my ear hurt but they just said it was normal. On Friday morning they sent me a bagel for breakfast (which just boosted my mood even more) & I felt bad for being inconvenient & asking for something else. My ear hurt even worse, & the baby in the room next to me screamed & cried through at least two of the five or so little nap periods. By the third one I was so frustrated with my inability to sleep that I just couldn't stop crying & sleep was hardly an option. It was the third day that I haven't napped since August. THIRD. Ugh! When they unwrapped the gauze from my head & took all of the electrodes off when it was time to be discharged I went into the bathroom to get all the gluey stuff off & noticed something weird behind my ear... A chemical burn. Some of the skin had died. Now it's a giant, nasty, gnarly scab. It was open for nineteen hours. I already have second degree burns on my knees, & this one hurts so much worse. How could I have been expected to sleep?! The nurse said that it had something to do with the salt solution in the glue & how they scrub your skin down before they attach it & then put tape over it. Basically he told us that "It happens" & there's nothing they could do. -___-

I got out of the hospital & went out to dinner with my Dad, stepmom, & three of my sisters. I had a great time. But then I had the worst meltdown I've had in years. For no apparent reason, of course. I love being behind all of my little sisters as far as emotional maturity goes. On the way home I just lost it. As if I wasn't already fretting over the whole Narcolepsy deal, my Dad is Narcoleptic, & he kept nodding off at the wheel. He always does it. I've gotten used to just keeping my hand by his arm to slap him when he starts swerving, but I don't know what happened. I ran into my house sobbing & told my Mom I couldn't stand myself, that I felt guilty for being alive & that no one deserved to put up with me. I'm feeling better today, but the twitches are coming back & I'm just in very low spirits. :/

[GatsMom]

Bleh. Monday & Tuesday were just normal bad. Wednesday I had a photo shoot & the photographer kept telling me to push my hip out farther in certain shots & it kept popping & by the time I got home walking was no longer an option. Fell into a Laz-boy with a bowl of AilidhFriendly chili & slept for ten hours. Barely made it to school. Then Thursday I had my MSLT. Let me just relay the conversation that occurred at the vegan restaurant me, my mom, & my stepdad went to beforehand...

 

"Okay, I can't eat gluten. Do you guys have rice pasta?" ~ Me.

"Yes. Would you like toast with that?" ~ Waitress.

"Can't do bread." ~ Me.

"We have spelt bread." ~ Waitress.

"Is that gluten-free?" ~ Me.

"No." ~ Waitress.

"Well... then no." ~ Me.

 

I just thought it was funny. I never get mad at waitresses. They have hard jobs. But anyway. Got checked into the hospital, took them two hours to get all of the electrodes & other gear on, & then it was time to sleep. But my ear hurt. Now, we P.A.N.D.A.S. & Lyme kids tend to have pretty good pain tolerances. I don't whine everytime I scrape my knee. My. Ear. HURT. They told me it was normal & to try to ignore it. I woke up four times in the night. I haven't woken up more than twice in one night since the Narcoleptic symptoms started almost two years ago. I kept saying that my ear hurt but they just said it was normal. On Friday morning they sent me a bagel for breakfast (which just boosted my mood even more) & I felt bad for being inconvenient & asking for something else. My ear hurt even worse, & the baby in the room next to me screamed & cried through at least two of the five or so little nap periods. By the third one I was so frustrated with my inability to sleep that I just couldn't stop crying & sleep was hardly an option. It was the third day that I haven't napped since August. THIRD. Ugh! When they unwrapped the gauze from my head & took all of the electrodes off when it was time to be discharged I went into the bathroom to get all the gluey stuff off & noticed something weird behind my ear... A chemical burn. Some of the skin had died. Now it's a giant, nasty, gnarly scab. It was open for nineteen hours. I already have second degree burns on my knees, & this one hurts so much worse. How could I have been expected to sleep?! The nurse said that it had something to do with the salt solution in the glue & how they scrub your skin down before they attach it & then put tape over it. Basically he told us that "It happens" & there's nothing they could do. -___-

I got out of the hospital & went out to dinner with my Dad, stepmom, & three of my sisters. I had a great time. But then I had the worst meltdown I've had in years. For no apparent reason, of course. I love being behind all of my little sisters as far as emotional maturity goes. On the way home I just lost it. As if I wasn't already fretting over the whole Narcolepsy deal, my Dad is Narcoleptic, & he kept nodding off at the wheel. He always does it. I've gotten used to just keeping my hand by his arm to slap him when he starts swerving, but I don't know what happened. I ran into my house sobbing & told my Mom I couldn't stand myself, that I felt guilty for being alive & that no one deserved to put up with me. I'm feeling better today, but the twitches are coming back & I'm just in very low spirits. :/

 

I'm sure sorry you're having a rough week but I, like many, think you are one amazing young woman! Oh yeah and p.s. my nearly 17 yr old PANDAS son saw your pic and is suddenly way more interested in latitudes and the copious amounts of reading I do on his behalf than ever before...go figure!

[Fixit]

 

I'm sure sorry you're having a rough week but I, like many, think you are one amazing young woman! Oh yeah and p.s. my nearly 17 yr old PANDAS son saw your pic and is suddenly way more interested in latitudes and the copious amounts of reading I do on his behalf than ever before...go figure!

 

If we could find a way to bottle, harness, direct hormones...i think we could control the world

..whaa.ha.ha..ha....and i would only need...one milllliiiioooooonnnn dollars!!!

[Fixit]

Bleh. Monday & Tuesday were just normal bad. Wednesday I had a photo shoot & the photographer kept telling me to push my hip out farther in certain shots & it kept popping & by the time I got home walking was no longer an option. Fell into a Laz-boy with a bowl of AilidhFriendly chili & slept for ten hours. Barely made it to school. Then Thursday I had my MSLT. Let me just relay the conversation that occurred at the vegan restaurant me, my mom, & my stepdad went to beforehand...

 

"Okay, I can't eat gluten. Do you guys have rice pasta?" ~ Me.

"Yes. Would you like toast with that?" ~ Waitress.

"Can't do bread." ~ Me.

"We have spelt bread." ~ Waitress.

"Is that gluten-free?" ~ Me.

"No." ~ Waitress.

"Well... then no." ~ Me.

 

I just thought it was funny. I never get mad at waitresses. They have hard jobs. But anyway. Got checked into the hospital, took them two hours to get all of the electrodes & other gear on, & then it was time to sleep. But my ear hurt. Now, we P.A.N.D.A.S. & Lyme kids tend to have pretty good pain tolerances. I don't whine everytime I scrape my knee. My. Ear. HURT. They told me it was normal & to try to ignore it. I woke up four times in the night. I haven't woken up more than twice in one night since the Narcoleptic symptoms started almost two years ago. I kept saying that my ear hurt but they just said it was normal. On Friday morning they sent me a bagel for breakfast (which just boosted my mood even more) & I felt bad for being inconvenient & asking for something else. My ear hurt even worse, & the baby in the room next to me screamed & cried through at least two of the five or so little nap periods. By the third one I was so frustrated with my inability to sleep that I just couldn't stop crying & sleep was hardly an option. It was the third day that I haven't napped since August. THIRD. Ugh! When they unwrapped the gauze from my head & took all of the electrodes off when it was time to be discharged I went into the bathroom to get all the gluey stuff off & noticed something weird behind my ear... A chemical burn. Some of the skin had died. Now it's a giant, nasty, gnarly scab. It was open for nineteen hours. I already have second degree burns on my knees, & this one hurts so much worse. How could I have been expected to sleep?! The nurse said that it had something to do with the salt solution in the glue & how they scrub your skin down before they attach it & then put tape over it. Basically he told us that "It happens" & there's nothing they could do. -___-

I got out of the hospital & went out to dinner with my Dad, stepmom, & three of my sisters. I had a great time. But then I had the worst meltdown I've had in years. For no apparent reason, of course. I love being behind all of my little sisters as far as emotional maturity goes. On the way home I just lost it. As if I wasn't already fretting over the whole Narcolepsy deal, my Dad is Narcoleptic, & he kept nodding off at the wheel. He always does it. I've gotten used to just keeping my hand by his arm to slap him when he starts swerving, but I don't know what happened. I ran into my house sobbing & told my Mom I couldn't stand myself, that I felt guilty for being alive & that no one deserved to put up with me. I'm feeling better today, but the twitches are coming back & I'm just in very low spirits. :/

 

Sorry you are having a rough time....I know you kids a have more on your plate than sooo many others your age....

And it sounds like your family has a history of illness, and you may be the one to lead them to recovery!!

Hang in there...you are strong...and you know something is doing this to you...it not you!

[EAMom]

As if I wasn't already fretting over the whole Narcolepsy deal, my Dad is Narcoleptic, & he kept nodding off at the wheel. He always does it. I've gotten used to just keeping my hand by his arm to slap him when he starts swerving, but I don't know what happened.

 

eek! It doesn't sound like he should be driving!

 

Has he had a sleep study done?

[EmersonAilidh]

Gat'sMom ~ Haha! Looovely. Whatever it takes, I suppose. Hahaha.

 

FixIt ~ You crack me up. & I sure hope I change my family's luck! We've been all kinds of sick for generations. I'm not having kids, but I know that ALL of my sisters are going to, so hopefully their kids are all well too.

 

EAMom ~ Yes, he's fully diagnosed Narcoleptic. Has been for twenty years or so. He just has his bad days. :/