Day 443

Wow!  It's been a long time since I posted an update...which in a way is a good thing.

I did start a blog posting about two weeks ago during a ferocious meltdown with the school and my husband.  Although my frustration with the school continues that particular posting started with misinformation...so thankfully I didn't post it cause that would have been very bad.

Cassie's headache continues to remain a 7.  She attended her sophomore semi-formal dance on Friday and she looked beautiful.

She had a great time with her friends which made hubby and I happy...she even had a friend sleepover all weekend.  Such a wonderful change of pace.  Cassie also has an admirer who she's seen a couple of times.  I won't go into any mushy, embarrassing details, but he seems like a nice guy and I met his mother and she was nice as well.  He hasn't officially asked her out but they plan to see each other again...ahhh, young romance...makes me wanna barf.

Cassie started attending not just one but two classes starting today and she has a bus ride home which makes hubby happy cause he doesn't have to leave work to pick her up.  I know she is really stressed out about the situation but I will not be making her go for more classes...it will just be too much and I'd like to keep moving forward instead of backward to her not being able to go to school at all.

The school...oh the school...it makes me want to stab something sharp in my eye.  Ugh, I know that there are standard operating procedures in place so that every "i" is dotted and every "t" is crossed so they can't possibly be at fault...but in doing so they make it so difficult on the parents and the student.  They wanted her to attend one class, which we agreed to and she did.  Within the first 2 days I was already getting hints of her attending a second class.  That really aggravated me that I felt pressure to push it to 2 classes after only a couple of days...but I fought back and told them she'd go to 2 on the 19th.  Then, they give me a hard time because Cassie's note regarding not attending school due to her headache is signed by a "nurse".  It isn't signed by a nurse it is signed by a nurse-practitioner...one step below a doctor basically.  So, now I have to get a new note about busing and her attending classes without changing too much of what is already in place because the school will then turn around and try to force something upon us that we don't want to happen. 

The nurse-practitioner was not very happy that I had to have a new note signed by a "doctor" and she wrote the note stating all her credentials and signed it...which I thought was awesome.  What really gets me worked up into a tizzy about the school is that I feel there is so much being placed on Cassie attending school full time instead of Cassie getting her school work done at any cost so she can graduate to a junior level student in the fall.  So, after speaking my mind I now have to attend ANOTHER meeting next Monday to iron out Cassie's new schedule and busing situation (because they make this so painful) and her credit situation (which I already know because nothing much has changed since our last meeting except she'll probably pass 2 classes because those are the ones she is attending).  I feel like these meetings are a joke because everyone seems so happy and helpful in the meeting...then I get the opposite in e-mails.  Hubby is coming, and he knows I am pissed off...hopefully he can keep me relaxed.

The other news I have is Cassie's lumbar puncture came back negative...which I had expected.  So we've started the paperwork needed to have Cassie stay at the inpatient facility in Michigan.  I don't know how long this is going to take but I want Cassie to get better instead of pushing it off and going through all this crap even longer.  She doesn't want to go but I told her it isn't really like a hospital...the rooms are almost like hotel rooms so it won't seem so cold and generic.  Oh well, I have to do what I have to do to get her better.

Day 429

Good morning everyone!

I hope you all had a good weekend...mine was great but too short (when aren't they?).

Well I have no real news, medically speaking, about Cassie.  Her headache has been bouncing around a 7-8 which is good considering she isn't on any real strong medications.  I still haven't heard back about that spinal tap so I have to call them back today.

The good news is Cassie has decided to go to school for 1 class.  This was discussed at our last meeting with the school and I told them if she felt up to it she could do it and we decided the week after vacation would be a good start.  She'll go back tomorrow because I wanted to let the school know she was going to come back (because they have to make arrangements for that to happen and I didn't want to make everything hectic and confusing for both Cassie and the school).  Of course the class is Early Childhood Development...which Cassie did not pick, it was picked for her...so she's not really looking forward to it but I hope she does well because it will be one less class we have to worry about her being tutored in.

Chris and I had a talk with her last night (well I didn't really talk in the beginning...I yelled...but mostly at Chris) about school and her headache.  My husband just can't seem to wrap his mind around the fact that she has a continuous, bad headache.  It's hurtful to Cassie that he "doesn't believe" her, but then she talked to him about everything she's been feeling and he said he understood it better.  I'll believe it when he doesn't hound her about school.  But really, the one thing that stuck with me about the whole conversation is something I haven't talked about yet because it is difficult but if I'm going to be honest with getting my frustrations out I really should discuss it...friends.

Before Cassie's problems pulled her out of school she had quite a lot of friends...it felt like a hundred.  Now, she has a few.  She has some who she talks to via Facebook to texting (one of them moved to Nashua South), and one friend she talks to quite often and she comes over the house about once every other week (she lives near by).  She got together with a group of friends one day during vacation and two of them slept over...and I felt like I was pimping her out when I dropped them off at their houses, yelling "she's available anytime!  Always home, come over anytime you want!!"  Geez, that's sad...

Everyone tells me that the attention span of a teen is that of a gnat but I didn't want to believe them...especially girls that Cassie has known since elementary school, or even younger.  Friends that she called close, or even best friends seem to have vanished.  It's difficult to watch your daughter cry about feeling abandoned and wondering why her friends don't talk to her...and I have to explain to her that these things happen.  That we've all been through tough times with friends...that friends, especially when they go to another school and have their own group of friends, grow apart.  I also believe it wouldn't be so noticeable to her if she did still have a social life...but being stuck at home and reading all her Facebook friends having a life has really taken a toll on her.  It just sucks... 

I always thank my lucky stars that at least she has a group of friends, from my oldest daughter, and that although they are waaaaaaaay older they don't do anything to put my daughter in harm's way and I can trust them....I always tell them if it wasn't for them I don't know what Cassie would have done...so thank you, you know who you are.

Alright, this is making me all weepy so I'm going to end it with a positive story.  Cassie got her shoes for semi yesterday...her dad bought them for her.  They are open-toe, lace up ankle boots...they don't, to me, go with the dress...but I can't see her wearing anything else.

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??