Day 423

Hello there everyone!

Well there's been a lag in updates because, really, there's nothing new.  I just called the Headache Clinic because I have not heard back from them regarding when Cassie's lumbar puncture test is going to be...which is fine with her because she doesn't want it done.

Her headaches have been bouncing around a 7-8 and she's still taking all the same meds.  No changes really...she's got tutoring every day this week during vacation (ha, ha, ha!) so I hope she'll get some good work done.

The only exciting thing that has happened so far, and if you've been on her Facebook page you'll know it already, is that Cassie got her dream haircut this weekend.  She wanted a "scene" haircut...I really don't know what that means...she explains it as "it's like emo but without the cutting"...I don't get it all I know is I've seen a ton of pictures and they all look like they could be in Vixen (okay, if you don't know who Vixen are they were technically the first breakout all female hair metal band...their big hit was "Edge of a Broken Heart", which was written by Richard Marx.  If you don't know who Richard Marx is look him up on You Tube.  I don't feel like going into it but aside from "Don't Mean Nothing" he is responsible for every sappy song made in the late 80s).

Okay so I'm already hip to the idea because as everyone knows I love my big 80s hair.  So, off to the Salon we go!!  3 f*^%$ing hours later we emerge...and her hair is, um...gold.  Okay so not the bleached out white look we were hoping for but we achieved this after 2, yes 2, applications of bleach and since we were already there an hour past closing time we settled for gold.  Actually it was about 3 different shades of gold:  bright yellow on the crown of her head, golden yellow for about 2 inches after that, then a darker gold for the rest of her hair (because she had dyed her hair black before).  You know, I thought that if you wanted bleached out white hair you go to a salon and you walk out a few hours later devoid of any natural hair color...that is not the case.  Sometimes it takes multiple processes to get it to that point...and since Cassie is only 16 and likes having a full head of hair we opted against that.

The next day we went to Sally's and I got her some Manic Panic purple hair dye to achieve full scene color glory (oh, this is after we went back to the salon and they added more layers).  We get home, and within the next hour I was helping Cassie go from something that belonged at the end of the rainbow to Grimmace's cousin.  Now, if you know Cassie you know she has incredibly thick hair...ridiculously thick hair.  So when you color it you need 2 boxes of hair dye.  I figured since we were only dying 1/3 of her head that one jar of color would do...but guess what we ran out of.  Yup...I couldn't believe it.  So, the wheels start turning and we opt to mix in some Jamz raspberry kamikaze and dye the rest.  Ugh, that didn't blend well...but the whole point of "scene" hair is sometimes the coloring doesn't follow a particular plan. 

When we rinsed there was not only a distinct difference in the 2 colors, but you could see a few spots I had missed (sorry I wanted to be a hairdresser...I am not one).  Also, some of the color on her ends didn't take and her hair looked like my mother's hair (IF my mother's hair was her actual shade...ha, ha, ha).  So we added a second helping of raspber...err, pink...and Cassie was very happy with the end result.

So...there you have it.  Cassie's new do! 

Day 419

Okay so I mentioned part of this already on my Facebook but it is so epic I have to mention it here as well.  So, hubby went and picked up Cassie's new prescriptions last night at Rite Aid.  No biggie...Chris has great insurance through the state (a sh**ty job, but great benefits) so we are shocked sometimes when a prescription falls into the 3rd tier (which means there's no generic for it and it is a specialty medicine) like my Nexium (seriously, aren't we due for a generic soon??).  3rd tier meds cost us $25...and I shouldn't balk at that because I know we are damn lucky that we have the great benefits we do because a lot of people pay that for a generic med (or worse).  So, imagine my surprise when my husband shows me the actual cost of the medicine before insurance:

You are reading that right...that is $1,047.99 for DHE nasal spray.  Oh, and that is 8 doses...EIGHT!  That's, like, a half a month's pay for me...that is nuts!  So, we are thankful that not only did it only cost us $25 but that it can only be used sparingly so it should last us at least a month.

She tried the spray last night and it worked really quickly...to the point that her headache was a 4.  We had her take her other medication in the hopes that once the headache was down the other meds would keep it down...but that didn't work.  This morning she woke up and her headache was an 8 again.  So, the spray is good for social circumstances and that is about it and because she can't take it every day it isn't good for school.

Speaking of school, we had our welcome call with VLACS last night (New Hampshire's online school).  Cassie is excited to take the class and I'm happy for her...although it looks like she'll have to use my computer.  She has a netbook and it just isn't powerful enough to handle the art software she needs (she did it but it lags so bad).  Also, I got a call from Nashua North because they said I needed an updated doctor's note...signed by the doctor.  Okay, so we were just at the school on the 14th and at first they said I needed a note excusing Cassie from school...which they had, but they had to find it.  You think they could have told me at the meeting, or the meeting before that, or the meeting before that, or when I gave them the damn note in the fall that they needed it signed by a doctor...Cassie's note is from who she sees and she is a nurse practitioner. 

Oh, it gets better...she then asked me if I could include a timeline of when Cassie will be back in school.  Are you serious?  We just talked about this!!!  If I had a damn timeline I would have shared it with the school...plus if there was any way she could attend school she would...ugh, dealing with these people is like watching a chained dog run around a tree...I get nowhere fast all the time.

So yeah...I'll get them that note...when I feel like it.  Stupid school.

Hey, so an idea for a fundraiser if we have to go to Michigan...a Cassie roast!!  What do you think???

Day 418

Poor Cassie...she did not have a good appointment yesterday.

After all the fussing I decided to go with Chris and Cassie to the appointment.  There we discussed how the insurance company is being an a**hole about the medication they want her to take so we can't get that filled.  Because she responded well to DHE during her hospital stay they've decided to give her the nasal spray version of it.  Now, we sort of have high hopes for this considering DHE is the only thing she has responded positively to but we understand that this isn't as strong as the IV version she had and can only be taken 2-3 times a week.  So, if she does respond well here are 2 scenarios it is good for:

1) It might give another medicine a chance to keep the headache away

2) She could take it before doing something socially and be able to tolerate attending.  For example, the movies; a trip to the mall with friends; a dance.

Now I know your thinking "school", but since she can only take it a couple of times a week I don't know if we can schedule school during her snorting...but we'll see.

Okay so that isn't a big deal right?  Well, I had suggested maybe another hospital stay to get the headache to zero and start again and was informed that they normally don't do that...the facility isn't set up for extended stays to try and find a medication regimen to keep the headache away.  So, they suggested a place that does such a thing...in Michigan.  Yup, Michigan...as in not near by...as in I see dollar signs.  But, before we can even think about doing something like that Cassie needs one more test done to complete her medical history.  You see, there is one test we haven't done yet because it didn't seem really necessary for her symptoms, but if we were to go to Michigan, or even to another headache place, they are going to want the results of this test in her file so we caved and decided it had to be done...a lumbar puncture.

A lumbar puncture is a fancy name for spinal tap and Cassie all but freaked out in the exam room when she heard it.  She's been steadfast against having one done and since it wasn't a priority we've let it slide because really...who wants one done?  So, Cassie was reassured that she can have a mild sedative (more Klonopin) to help relax her...but she wants to be put under.  LOL  Anyway, once those results come back then we can look at other options because...it's sad to say...they are running out in Lebanon.

Day 416

Alrighty...let me start off by apologizing.  Apparently the lump was under Cassie's armpit and the doctor just told her to put warm compresses on it and such.  The thing is I could have sworn the lump was lower but then again I was trying to keep her from being embarrassed...ya know...having mom poking around the chest area is kind of weird.

Anyway, today brings us no news.  I called the headache clinic and 1) told them that the medicine was not working; and 2) asked if the other medicine has been approved by the insurance.  They said they'd let the doctor know.  Now normally I'd be pitching a fit...and don't get me wrong I'm pretty ticked off that we are starting from scratch...but she has an appointment there tomorrow afternoon so I'll just have to let it go until tomorrow when Chris takes her.

Oh no...Chris is taking her...I should make a list of questions/complaints.  LOL  No offense to any men out there who are communicative to their spouses and offer great detail, but my husband is not one of them.  Trust me, I can be a pain with a lot of nagging questions:

"How did it go?"
"Did you mention this?"
"What did they say?"
"That doesn't sound right...are you sure that's what they said?"
"But did you ask them the way I said it?"
"Why not?"
"But I said it this way and that's probably why they didn't answer it right."
"Forget it I'll call them!"

Would not be the first time I called after Chris took her to an appointment...probably won't be the last.  Poor guy...sometimes I can't believe he puts up with me.

I'm beginning to think it would be beneficial if Cassie get admitted again and we get the headache to zero.  That way we can start over and hopefully these new meds (if I ever get them...are you listening Caremark?) will work.  See, as most of you have been told pain medicines have the best chance of working when you take it at the onset of pain...if you take it while the pain is in full swing it takes longer to work and may not alleviate all the pain.  So, are we really going to get the pain to zero (or 5...remember I'll even take a 5) with all this stuff??

Ugh...I'm hoping for a miracle that I've been waiting for since last year.  I hope it comes soon.

Day 415

Good Monday to you...and Happy President's Day.  Yeah I don't know what there is to be happy about, I'm one of the few who don't have the day off although I don't know why it is dead as a doornail here.  I feel like crap...stupid sinuses are acting up...and I had my physical today and got a shot and my arm is just killing me.  I'm miserable, I'm cranky, and I want to go home.  But...this isn't about me...

Cassie...let's see.  No change in her symptoms and when I called the Headache Clinic to let them know I found out they are closed today (really?  Am I the only one stuck at work??).  So I'll have to call them tomorrow.

Yesterday was Cassie's Birthday...my baby girl turned sweet 16.  We tried to make it as special as possible even though there is one thing every 16 year old girl wants...a party.  Well we can't have a party if she feels terrible (plus we are broke) so we promised her that when she gets better she'll have her party.  We took her out for a Birthday lunch and she got lobster which she enjoyed tremendously.  We also got her a little red velvet cake to celebrate (not that any of us needed cake) and we got her a sapphire ring.  I wanted to get her something special since she's not had it easy the last year.  I just hope she takes care of it.

Probably the most alarming thing that happened over the weekend is she let me know yesterday morning that she found a lump under her arm.  Well it isn't really under her arm...it's down her side but parallel to her chest.  I'm kind of freaking out because I've never heard of anyone getting them so young.  I guess it isn't unheard of, at least in the internet world.  So she's going to the doctor today to have it checked out.  It seems to fit the cyst criteria (round, moves when you touch it) so I'm sure they'll just tell her to watch her caffeine intake but geez, can someone give this girl a break??

Day 411

Yeah I know...I missed a day.  By the time I was going to type this I suddenly got busy and couldn't...but I'm glad I didn't because the best part of the story (sarcastically speaking) happened last night.

So, Cassie feels the same...no change.  We met with the school Tuesday afternoon and I am pleased to say it went quite well.  Hubby and I were a united front and it was a nice feeling...way better than the stressed out mess I was before the meeting.  Anyway, they pulled her from 2 classes...not because she was doing bad or couldn't keep up, but because they were upper level classes and she shouldn't have been in them in the first place.  Since she only went to school 3 days I can't really put up a fight, so fine what does she have now?  Bio, English 2, Child Development...and something else I can't remember.  She's going to start back with her tutor (Oh Mr. Mays you are a glutton for punishment aren't you) next week and since she has a doctor's appointment on the 22nd we decided to wait until after February vacation to see if there is a possibility of her at least returning to school for 1st block.  Whatever that means, you know I miss the days when you went to school and had all your classes in one day...this whole block thing is confusing to an old lady like me!

The best news of the meeting??  Cassie is officially a sophomore!  Yup, she finally has enough credits that she was able to move up from super freshman to sophomore.  I'll admit...I cried...seriously I balled my eyes out I was so happy.  That also means that at the end of this school year she will need to either do VLACS or summer school to make up the credits she will be lacking in order for her to go to school in the fall a junior.  We are hoping for the best!  I enrolled her in VLACS already to get her started so I hope she can keep up with all her work.

So Valentine's night was spent pigging out on the best fettucini alfredo around and then putting hubby to bed early because he's got a nasty cold.

Yesterday, well yesterday wasn't really a big deal until last night when I had to get her meds refilled.  You see, I was warned last Friday when the prescription was originally called in that a waiver, or override form...crap I can't remember what it is called...was being sent to the insurance company because this medicine's general use is like an Immitrex or Zomig...you take it at the onset of a migraine and it will go away.  Well this isn't her dosage her dosage is twice a day everyday.  So the form was sent in so we could get more of the pills.  When I originally picked up the meds that night I got 9...the standard prescription.  "Well..." I thought to myself, "this will take care of a few days while the form is approved".  Forward to yesterday when Cassie informs me she is out of pills and needs a refill.  Okay, I phone it in...no problem.  I came home before going to CVS because I wanted to make sure the refill went through before making a trip for nothing.  I called the automated system and it said it was ready.  Fantastic!  Let's go!!

I get to CVS and the kid behind the counter brings over a bag that looks like it contains 9 more pills...with a notation "not available for refill until March 9th".  So, they filled it but if I want it I have to pay full price...$189.  Let me just say that again...$189 for NINE PILLS...and this is generic!  I told the kid that there was a prior authorization (hey, that's what it is called...I remembered!) done on Friday so I could get more pills.  "Well have a seat and we will call the insurance company.  It will be about 15 minutes." 

{Insert Jeopardy theme here}

We could tell they were making the call because we could hear the pharmacist spelling our last name...3 times (I miss my maiden name sometimes).  She called us over and said the prescription could not be filled until March 9th...no shit.  I mentioned the prior authorization that the doctor's office did.  But guess what?  The insurance company didn't have it.  So, as we were leaving empty handed the pharmacist says to me "you know if she needs the medicine that bad maybe you should try something else".

Thank God I can sell a smile because I wanted to jump over the counter and say "well thank you so much...oh Goddess of Drugs.  A year has gone by and I never thought of that but because of you I now see a path not yet taken.  I shall get a goldfish and name it after you".  But instead I turned around and said "she's had this headache for over a year...we've tried everything else.  Have a nice night".

So last night Cassie's head hurt really bad and there was nothing I could do about it but wait until today to call the doctor's office.  I'm waiting for a call back.

Day 409

Happy Valentine's Day!

Well I heard back from her pediatrician and all her bloodwork came back at normal levels.  This was fantastic news since I was concerned her levels were going to be high...I'm hoping it is because of the healthy changes we've made to our diet recently.  I can't help but be a bit bummed about the results too because I was hoping there was an answer to the headaches hidden away in her veins...isn't that sad?  You get to a point where you hope there is a problem with your child cause then you'll finally have an answer.  Her blood sugar was on the higher end of the normal range, but normal...so, so much for that being the reason for the headache.

Today I get to meet with the school to discuss options for Cassie.  Which means I have a new group of teachers that I have to explain the situation to all over again and listen to their suggestions which are going to be pretty pointless.  I have a doctor's note that states she cannot attend school when the headaches are bad...they are bad...hence, no Cassie in school.  Do I want her to go to school?  Yes.  Does she want to go to school?  Yes.  I just want to walk in and say "hello...who is going to tutor her?  You...excellent...see you tomorrow and don't forget the pile of make up work she'll have.  Good bye."  Oh, I can't forget that she hasn't taken her finals from the first semester (except math because guess who was her tutor...the math teacher).  I'm going to sign her up for VLACS (our online school) as well...she's got some credits to make up.

My husband just called and said he's coming to the meeting.  You'd think this was a good idea...but we've been butting heads lately about the whole school thing and frankly, I do not want to fight in front of the other teachers.  I mean, my husband is going to walk in and say "I want my daughter in school"...what are the teachers going to say?  "No...school isn't important she should stay home".  This isn't about the school not allowing her in it is about the pain level she is experiencing and how it is not practical to send her to school in such pain. 

Every day my husband says to Cassie "if you feel up to it I'll bring you to school tomorrow".  Every other day my husband says to me "she really needs to be in school"...and every other day I explain to him why she isn't in school and how I am trying to fix that so at least she can get some sort of an education while trying to reduce the pain.  When her headache was a 5 she went to school...okay, so if I can get the headache to a 5 (maybe even a 6) then she'd go to school.  I'm not hoping for a freaking 0 anymore...that's way down on the importance list...I want it to be a stupid 5!  So, instead of hubby saying "okay let's work on this" I get "yeah but...{insert repetitive conversation here}".  I feel like we just aren't on the same page and frankly it is really not helping my stress level...and it isn't helping Cassie either.

Maybe I'll be surprised and they'll be a united parent front today...or, I might be eating at Florence's by myself tonight.

Day 408

A brief rundown of the last week or so:

Cassie was on Methergine since she left the hospital in November and although the headache did come back it was around a 5 on the pain scale.  She returned to school at the start of second semester and we continued to work with the doctors to get her pain to stop altogether. 

Well she had a breakthrough headache and the Methergine stopped working.  Since this medicine has lots of nasty side effects that would have Cassie getting EKGs and Catscans every 6 months, and it stopped working, she was weaned off.  The medicine was out of her system by Friday, February 10th and she started her new medicine on the 11th.

This medicine here, Naratriptan (Amerge), reminds me of a medicine like Immitrex.  According to the instructions it is to be taken at the start of a migraine and cannot be taken on a regular basis...unless you are a doctor and know it can be so now we are waiting for the authorization to be approved so we can get more than 9 pills at a time.  At the time when Cassie started taking this med her headache was between an 8 and 9, but when she takes it her pain level is a 7.  After a couple of hours it wears off and she's back where she started...so now quick fixes with this one (why am I not suprised...none of them have been quick fixes).  So I called the doctor today and they insist that it needs to build up in her system so she is to continue taking it 2x a day until her next appointment there which is the 22nd.  I can't wait to tell Chris he's taking her this time.

It's not that it is a bad place, it is in Lebanon, NH...which is a little over an hour and a half from our house...so it just makes for a long day.  I'm currently waiting for a call back from her pediatrician who she saw on the 10th for physical and bloodwork. 

She is out of school again and now I have to meet with the school about getting her a tutor for the 2nd semester.  I wouldn't mind but I don't even know if she is done with ther 1st semester classes.  I'm trying to keep her as up to date in school as possible but I feel such opposition sometimes when I try to get answers.

I'm completely stressed out and just frazzled over this whole situation...damn it I want my daughter back!