& here we go again... ..

[EmersonAilidh]

After my throat hurting for a few hours two days ago & yesterday, my Mom is now couchridden (she's very thankful for Judge Judy marathons right now) & stepdad might have to come home from work his throat hurts so bad. 3/4 people in the house (not to mention my two bestfriends, who are also stuck at their houses) with strep. Or, so I assume since I asked my mom to schedule an appointment with my pediatrician three days ago & she never did. With my history it's a pretty safe bet though.

I suspect that this is day three or four of the infection. Now, for some reason, cooking eggs is one of THE most anxious activities for me... If I break the yolk, I freak out. But I need them (along with nuts & beans) for protein, so even though I knew it was probably more risky than usual, I decided I wanted an egg this morning. Only to break not one, but TWO yolks. It was like opening a floodgate. I was hoping this infection would go by somewhat peacefully.. But no. I started calling myself stupid (admittedly with a few more obscenities involved), threw the eggshells, & started crying. My Mom swooped in & cooked me an egg, which only made me feel even more stupid. I'm fifteen years old & my Mom has to cook my breakfast because I'm a freak & have a meltdown everytime I try.

Now, I'm just sitting in my room. I can't remember the last time I felt this angry. It's SUMMER. I want to be out swimming with my friends! Not sitting in my room wallowing in anger. It's been almost two months since I sent my Mom the two doctors in Dallas who are P.A.N.D.A.S. supportive. I could be on antibiotics right now.

 

BUT. I'm signing off because this is not the place to vent. Sorry.. I just had to get a little of that frustration out. :/

 

Needless to say... I think I'll just be eating a lot of peanuts this week. No more eggs for me.

[peglem]

After my throat hurting for a few hours two days ago & yesterday, my Mom is now couchridden (she's very thankful for Judge Judy marathons right now) & stepdad might have to come home from work his throat hurts so bad. 3/4 people in the house (not to mention my two bestfriends, who are also stuck at their houses) with strep. Or, so I assume since I asked my mom to schedule an appointment with my pediatrician three days ago & she never did. With my history it's a pretty safe bet though.

I suspect that this is day three or four of the infection. Now, for some reason, cooking eggs is one of THE most anxious activities for me... If I break the yolk, I freak out. But I need them (along with nuts & beans) for protein, so even though I knew it was probably more risky than usual, I decided I wanted an egg this morning. Only to break not one, but TWO yolks. It was like opening a floodgate. I was hoping this infection would go by somewhat peacefully.. But no. I started calling myself stupid (admittedly with a few more obscenities involved), threw the eggshells, & started crying. My Mom swooped in & cooked me an egg, which only made me feel even more stupid. I'm fifteen years old & my Mom has to cook my breakfast because I'm a freak & have a meltdown everytime I try.

Now, I'm just sitting in my room. I can't remember the last time I felt this angry. It's SUMMER. I want to be out swimming with my friends! Not sitting in my room wallowing in anger. It's been almost two months since I sent my Mom the two doctors in Dallas who are P.A.N.D.A.S. supportive. I could be on antibiotics right now.

 

BUT. I'm signing off because this is not the place to vent. Sorry.. I just had to get a little of that frustration out. :/

 

Needless to say... I think I'll just be eating a lot of peanuts this week. No more eggs for me.

Oh, but this IS the place to vent. For me, at least your vents are valuable, because they give me insight into what my daughter experiences and she cannot really express it (w/o beating on me!)

 

And, uh...there's a Judge Judy marathon???? When, where? I love that show, but seldom get to watch (maybe its a mom thing) because the time is not good for me!

[EmersonAilidh]

Oh, but this IS the place to vent. For me, at least your vents are valuable, because they give me insight into what my daughter experiences and she cannot really express it (w/o beating on me!)

 

And, uh...there's a Judge Judy marathon???? When, where? I love that show, but seldom get to watch (maybe its a mom thing) because the time is not good for me!

 

Haha! I think she has it Tivoed. She's just a tad obsessed with it.

 

My rages are all taken out on myself. My Mom is a pretty tiny woman at 5'10" & just over 100 pounds. Metabolism of a RACECAR, I swear! She can eat whatever she wants & it just doesn't show at all. But, that being said, I'm pretty sure that me beating on her would not go too well. I used to beat myself when I got overwhelmed, ESPECIALLY when I was dealing with depersonalization about a year & a half ago. Honestly it was when the trichotillomania (excuse me if I butchered that spelling...) came about eleven months ago that the self-abuse stop. Not that I pull my hair when I get overwhelmed & go into a rage, but it helps me to be less anxious. Although, at first I was pulling from the top, which earned me a bald spot both quite impressive & quite noticeable. I used to straighten my hair, & everytime I got frustrated I would run my fingers through my bangs or over the top of my head & pull out the ones that I could feel curls in. Around November/December (at a school that I HATED) it got to be an obsessive thing. When I put my hands down from pulling my hair out in class they would HURT until I did it again. My bald spot could be seen in photos by April, & it was when I saw a photo of me & my friend Heather that I made myself start pulling from the bottom. It has gotten MUCH better though..

 

http://sphotos.ak.fbcdn.net/hphotos-ak-snc4/hs141.snc4/36391_134999723193312_100000498556822_315528_875815_n.jpg

(photo of the bald spot^)

 

One of my weirdest & least understood compulsions came about in June of this year when RaceTrac (a gas station) came out with the "FreeFill" cups. You bought this big cup for $7.55 & got free refills all summer. But they were only on sale for about a week & a half, so everyone was stealing eachother's cups. I started keeping an eye on mine. Then I started carrying it around.. Now, I can't go anywhere without my cup. They aren't even getting stolen anymore, I just have to have my cup with me. The upside to this compulsion is that whenever we just so happen to pass a RaceTrac, I'm ALWAYS ready for a free refill, hahah.

 

Sorry, I don't know why I'm talking so much.. :/

[thereishope]

They do sell already hard boiled eggs at the grocery store. It doesn't "fix" the problem, but at least you will have nutrition. Also, when you make them, bring the eggs closer to room temp and slide them in with a slotted spoon instead of dropping them. Try to get out of the house if you can, even if just to get some natural sunlight for a few minutes. It will help. Hang in there. You WILL get better!

[EmersonAilidh]

They do sell already hard boiled eggs at the grocery store. It doesn't "fix" the problem, but at least you will have nutrition. Also, when you make them, bring the eggs closer to room temp and slide them in with a slotted spoon instead of dropping them. Try to get out of the house if you can, even if just to get some natural sunlight for a few minutes. It will help. Hang in there. You WILL get better!

 

I'm trying to fry them! Not exactly the healthiest, but hey. I can't even imagine trying to boil them, hahaha. I think that would just lead to a nervous breakdown. Thank you though!

& I have been sitting on my back porch every now & then. Mid-July in Texas & our AC is broken. Outside is actually cooler than inside! Bleh.

[mkur]

Don't flip them. Cook them with the lid on the pan or under broiler in oven.

 

Check out:

 

My dad(70ish) loves youtube he says you can find and learn everything.

 

If there is a will there is a way....

[LNN]

Sorry - I lost track of the thread where you were trying to get an appt with Dr K. Did that ever pan out? (no pun intended).

[EmersonAilidh]

Mkur - Thank you! Hahaha. Posts like that are why I love this forum. I think that I'm just gonna avoid eggs at least until this infection is over. My house is walking on eggshells (no pun intended) right now, I don't wanna have another blowup...

 

LLM - Haha! That made me laugh. & yes, I got an appointment! Originaly for July 16th, then rescheduled for July 20th. Then my entire Chicago trip was canceled.. I was planning on doing a phone consultation, but as soon as I heard $500 that plan died, hahah. I hope to see him eventually though! Maybe next summer.

[P_Mom]

EA...you are a beautiful girl...inside and out....you'll make it!!!

[EmersonAilidh]

EA...you are a beautiful girl...inside and out....you'll make it!!!

 

Thank you so much. I love my little online P.A.N.D.A.S. family.

[P_Mom]

Ea.....(and all).....okay, I have a confession to make. Like Ea says she pulles her hair out and even gave us a picture, well, I was a HUGE facial skin picker for about 20 years. It was really bad......just ask my hubby! I would spend hours in the mirror picking at nothing until I had scabs all over my face, which led me to be depressed and not want to go anywhere. I could not stop....I used to try to actually hold myself down when I felt the urge....I always lost. You know when I completely stopped cold turkey??! When my kids had their PANDAS episode.......I haven't picked or thought about it since then. I guess I traded one compulsion for another. I seriously have to wonder if I was/am a case myself.

[EmersonAilidh]

Ea.....(and all).....okay, I have a confession to make. Like Ea says she pulles her hair out and even gave us a picture, well, I was a HUGE facial skin picker for about 20 years. It was really bad......just ask my hubby! I would spend hours in the mirror picking at nothing until I had scabs all over my face, which led me to be depressed and not want to go anywhere. I could not stop....I used to try to actually hold myself down when I felt the urge....I always lost. You know when I completely stopped cold turkey??! When my kids had their PANDAS episode.......I haven't picked or thought about it since then. I guess I traded one compulsion for another. I seriously have to wonder if I was/am a case myself.

 

Well it's good that you've stopped! I tear at my eyelashes, never my face though. That sounds so sad.

I'm glad you decided to open up to us! <3

[wornoutmom]

Emerson: So eggs aside, have any of your family members been to the doctor yet?? I know adults are sometimes bad about taking themselves to the doctor - they just try to wait it out...But if you've been so brave about trying to schedule with Dr K, could you schedule your own pediatrician appointment? I remember making and walking to a dr appt. after school when I was about your age, and then walking home another mile to tell my mom I had been diagnosed with mono. I don't think I got up off the couch for another month!!! She did have the decency to feel guilty later on about making me walk there....I also had another thought for you. Have you tried to email Dr T at all? While he won't prescribe or run tests for you without payment, he may be willing to do a phone consult with you/your mom for free. It might be worth checking into. And one last thing so you don't feel so freaky. My son (14) has not been able to drink milk for years because of his PANDAS. And though he loves to cook, he won't crack an egg - always calls in me or little brother to do it for him. You are not alone!!!

[EmersonAilidh]

Emerson: So eggs aside, have any of your family members been to the doctor yet?? I know adults are sometimes bad about taking themselves to the doctor - they just try to wait it out...But if you've been so brave about trying to schedule with Dr K, could you schedule your own pediatrician appointment? I remember making and walking to a dr appt. after school when I was about your age, and then walking home another mile to tell my mom I had been diagnosed with mono. I don't think I got up off the couch for another month!!! She did have the decency to feel guilty later on about making me walk there....I also had another thought for you. Have you tried to email Dr T at all? While he won't prescribe or run tests for you without payment, he may be willing to do a phone consult with you/your mom for free. It might be worth checking into. And one last thing so you don't feel so freaky. My son (14) has not been able to drink milk for years because of his PANDAS. And though he loves to cook, he won't crack an egg - always calls in me or little brother to do it for him. You are not alone!!!

 

Nope! They won't go! & honestly I don't even have my pediatrician's number, or else I would have by now. We suspect the infection set in this past Thursday, so I've been given the "OK" to leave the house since they don't think that I'm contagious anymore. Spent today out & about in Dallas with my Aunt & Mom, honestly feeling quite guilty for even being outside. I KNOW that I'm more prone to infect others than to infect myself.. But it was a family-oriented thing & they told me to go. My Mom is VERY bad at scheduling things.. . Still no appointments with either of the doctors that I sent her TWO MONTHS ago. It's very frustrating, but her work schedule is not consistent so I can't make the appointment myself since I don't know when she will be working.

 

& no, I have never emailed Dr. T. How would I go about that??

Edited July 21, 2010 by EmersonAilidh

[EmersonAilidh]

Small victory! Got my Mom to watch the P.A.N.D.A.S. episode. It actually ended up being pretty emotional... Not what I expected. During this week where we're pretty positive (I wish we could be TOTALLY positive -__-) that my house is just teeming with strep, I've noticed that besides my tics (including the return of a chihuahua sounding sneeze twitch), my irritability & my anxiety (which has gone through the ROOF), I haven't seen nearly as much change as I was expecting. I was only really looking because as I've said, I'm not used to knowing when I have strep AT ALL. When they briefly mentioned the brain damage in the episode, I told her about "chronic P.A.N.D.A.S.", because she was confused as to why when I WAS prescribed antibiotics for strep when I had it (except for this time) I didn't get too noticeably better, like Sammy's miraculous recovery on the show. I explained to her as best as I could. My entire family has agreed that we can remember symptoms back from when I was two years old. It wasn't until I was ten or eleven (sixth grade. Honestly can't remember which age it was) that I received ANY treatment, & you can hardly call pharmaceuticals treatment. Well, besides the occasional antibiotics when a strep test came up positive. If it's suspected that every episode wreaks a little havoc on the brain.. What is suspected to be about thirteen years (& counting) of these episodes left untreated have made it to where I just.. always feel "off". It was really hard to talk to my Mom like this, but I'm glad that I did. One common symptom that never really fit me was the seperation anxiety. I'm surprisingly independent, I LOVE being alone. So to sit my Mom down & tell her all of this, explaining titers & PET scans & IVIG & PEX, it felt really good. It felt like the first time that my Mom acknowledged that even though my tics are no longer incapacitating, I am still very sick. When she expressed interest in getting on antibiotics to make me "all better", I told her quite bluntly that he was diagnosed & treated fairly early, & that even though treatments saved Sammy that I don't think there will be anything that can save me. I'm come to terms with it.

 

There was one time about a month ago that she walked into the house to find me circling the dining room table mouthing to myself (talking without words. My VERY first twitch that has gradually become a compulsion as well. If that makes sense). When she saw me she laughed innocently & said "What are you doing??", & I was just immediately SO embarassed, told her "Nothing", started crying & ran upstairs. Tonight I got to explain to her that my pacing is not just a little quirk. I finally confessed that when her & my stepdad go to bed, I will pace for HOURS without stopping. That I can't help it when I cry when I wear shoelaces & that there's a reason I always paint my nails three colors. My main problem with P.A.N.D.A.S. is vocalization. Until two years ago, I told NO ONE. If they saw me doing a behavior I would laugh it off, & if they saw me twitch I would just lie & tell them that I had Tourette's. This constant, well, basically denial has admittedly spread over to how I act around my Mom. I feel SO bad that my Mom can't just have a normal kid, like all the other Moms she knows that don't have to worry about panic attacks or random rages. But I think tonight was a gigantic step in her understanding. After we were done talking, she mentioned that she had noticed me ticcing, which meant a lot. She even noticed something that I hadn't, that my voice has gotten consistenly deeper & raspier over the past month. Knowing that she IS paying attention was so good to hear.

 

Sorry for the long update, but I figured that with all of the discouraging posts I have contributed to this forum, I owed you guys an uplifting one.