Pain and Hassles

Yesterday I spent the whole day in pain...I was out of pain meds and the doctors were giving me a run around. I had switched getting the prescription from the neurosurgeon to my PCP since I have a hard enough time trying to get to the PCP's office no less the neurosurgeon's office...I guess that was a mistake?!

This is the 3rd time I've tried to get my pain meds through my PCP and she was out of the office. I sent an email at 5:30 AM and at 8:30 AM I called them to follow up. I got the "you just filled it on the 10th and 19th" and you shouldn't be out...Ok...once again I explain the neurosurgeon said (and I have it in writing) that I should be taking 2 every 4 hours...which means I am going through 12 a day...yes the pain still wakes me up in the middle of the night so yes, I am still taking them every 4 hours because the pain is still bad enough to wake me. I directed the nurse to the neurosurgeon's email which clearly states that he is recommending that I take the 2 every 4 hours...which means when they give me 60 pills, it's only a 5 day supply....Of course, I am still paying $15 for a 5 day supply when my policy outlines I should be paying $15 for a 30-day supply...there's "nothing they can do" because they are only allowed to prescribe up to 60 at a time anyhow. That's fine, I just need enough to get me through til I can talk to my PCP herself anyhow....3:30 rolls around and I have still heard nothing about my meds...I am in tears and pain and feeling pretty darned edgy!

Finally I get a call back from the nurse (a different nurse than who I have been speaking to and emailing with all day) and she says one of the 'partners' have agreed to refill my pain meds BUT that she is suggesting I take only 1 every 4 hours since it can cause liver damage and I need to be weaning myself off of them. Trust me I AM trying to wean myself off of them...I explained that even when taking 2 every 4 hours it only takes the edge off the pain, but I have been trying to extend the time to 5 to 6 hours in between. One does nothing for me...might as well be taking tylenol. Well this doctor takes it upon herself to go ahead and change my prescription to read that I should take 1 every 4 hours....which means I will not be able to fill it for 10 days...even though the neurosurgeon clearly said elsewise....I told the nurse that I had BRAIN surgery 4 weeks ago and yes, I am in pain...I'm not being addicted, trust me, I would rather be off them and able to drive...and not in pain!! The nurse said she was not aware I had brain surgery...GIMME A BREAK!!

So after this phone call, I call back the neurosurgeon's office, in tears and pain still...and explained that this doctor won't give me the full prescription and is giving me 60 and expects that to last 10 days...I went on to explain what they said about the liver damage, which the nurse at the neurosurgeon's office went over with me...it's not the percocet that would cause that but the tylenol...I cannot exceed 4000mg of tylenol a day. Theref0re, I should not be taking tylenol INSTEAD of my pain meds since the pain meds contain tylenol. At my current dosage, I am taking 3900mg a day and they feel that is safe for now. There is nothing else they will give me for pain.

The nurse at the neurosurgeon's office totally understood my frustration and said that she would make a note and flag my file that I had this surgery and that the doctor is suggesting 2 every 4 hours until at least I see him on the 8th. We'll see what happens when I finally get through to my PCP.

I also found out that I need to be on prednisone for another month still...yuck! I do not like this stuff, it makes me shake and unable to sit, no matter how much pain or how tired I am...I am to continue on predinisone until the doctor tells me I can stop taking it and that could be up to SIX months?! I am having so much swelling and it does help with the swelling...I am still not able to take ibuprofen or aleve or any product like that...I am not able to take benadryl or anything other than what's been prescribed (I double checked with the surgeon's office yesterday!).

Ok, I guess this all sounds like I am complaining...It started as a complaint about how the doctors were giving me the run around with my pain meds...but I have to at least be thankful I have health insurance....at least for now....I hope the dr returns me to work as of the 9th or I don't know what I'll do to pay the $400 a month in premiums ....

oh yeah, and....I forgot to mention

that the antibiotics seem to finally be doing their job ... no more itching! I'm nearly done with the ones I have though and kind of worried it might come back...no, we won't do that....positive thoughts only! LOL

Kerri and Kate and Andrew ...and.....oh my!

I wanted to make sure I posted here too how very grateful and lucky I am to have to met Kerri and Kate and the rest of their family!! They have brought me so much joy in knowing I could help even when I was just sitting here...feeling like there's nothing I can do....

They have been most amazing, coming and keeping me company...we have had SOOOO much fun...it's so nice to have friends!! Then they came down and brought me a HUGE tv...(from my wish list...oh I gotta update that!). I can read the closed captioning now! I am so happy! This is a beautiful TV...I can't remember, but I think she said it was a 27" TV...which is the biggest TV I've ever had in my life.

I can't wait to be able to do the Wii Fit again...OMG I learned today that I can upgrade to the Wii Fit Plus for only $20 because I already have the Wii Fit! WHOOT...I hope I can get that for my birthday next month...If I get it now I might be tempted to use it...and I can't even do yoga right now :(

Anyways, I wanted to give huge (((((((((HUGS))))))))) to Kerri and Katie for bailing me out when it came time to do the TV interview as I am just too nervous to be on camera and I know I would've just cried....besides to me I think my eyes still look a little blackened and I didn't think of putting on makeup....

Oh I'm gonna put a link here...then y'all can see Kerri and Lindsay....and learn about Santa Swap....It's been a lot of fun and we hope that we can make this a year round, nationwide community effort!! Well, here's a link to the FOX article, not sure how to access the video? Here's the link to the Channel 9 video
and there was a feature article in the Columbine Courier yesterday

Dinner was delicious....and more.....

do you know what that title means? I actually tasted my dinner last night!! WHOOT WHOOT...I could breathe through both sides of my nose last night and I think that helped. I can't taste everything I eat, but I tasted my salad (and I added ALL the fixings!!). It's so exciting to taste again! I ate some of Lindsay's Scotch Krispies (recipe here)...they are soooo delicious too!! LOL

I thought I'd be able to sleep in bed last night...but that lasted about 10 minutes before I felt like relaxing....and my pile O' pillows fell off the side of my bed and made me lay too flat...so back to the couch...Maybe for Christmas I'll get to sleep in bed again?! I can't wait. But I'm making amazing progress and am so happy to be feeling so well!

Of course, I am taking it a little easier than last week so far as doing chores around the house. It helps that the children are home from school to help with chores. Harley's been "in training" to do laundry. I go down and guide him verbally and he does the laundry. Yesterday he started it all on his own!! I just have to make sure he doesn't overload it and that he remembers to set the temperature. He's enjoying helping out so much!! The other day he asks me "mom is the dishwaher clean or dirty". I tell him it's clean...thinking he was looking for cup?...it brought me to tears to realize that he was actually unloading the dishwasher without even being asked or prompted. No, he didn't get the right lids on the right sippy cups, no he didn't get the plates in the right place BUT that doesn't matter...I waited til he was in his room watching a movie and put them where they belong...I was SOOOO proud that he did that!! I still cry just thinking about it! < < < oh I should put that 'story' on my Harley blog too....so you may see it there C&P'd

Well, it's still quiet here, everyone is asleep so I'm going to relax for a little while longer...

Mom seems to think this is hilarious....

It's Kelly

WATCH THAT NOSE!!!!!!
I think its the percocet... but i dont know...

Maybe it's the percocet, or maybe the saline went into her brain... I dont know. She seems to think its hilarious-- but you tell her. Comment!

Yes I realize it's 4 AM...

and it's awful that I am up....but I got woken up with pain and itching...I guess I am going to have to call my doctor and get in frist thing Monday. Seems even with the antibiotics the cellulitis is spreading...I now have it on a couple of my toes, a couple of my fingers, my upper left arm and my face!! The spot that started it all looks pretty good and only itches when the antibiotics are nearly out of my system (that is how I know that I need to take more!)....unfortunately it looks like I'm going to need something stronger in the way of antibiotics. This stuff itches to the BONE! I could scratch til it bleeds (which I won't do) and it would still itch. The only thing I found to relieve it is ice packs.

Once this itching starts, I cannot sleep or do anything else...that is why I am sitting here typing at 4AM...to try to ignore the itch until the antibiotics take effect.

I know that sounds like I'm whining...I guess I am...

Yesterday Melissa and Frank came by for a while and visited. They are such wonderful people! Frank and Andrew get along so nicely...I think we're going to try to find a way for them to meet up and become closer friends...It was funny...he was talking about the boat Andrew gave him and how he's already taken it out on the water...and I was commenting on how they are so much alike...Somehow camping came up ... which Andrew has been wanting to do for YEARS (since he and I have been together he has not been camping once!)...Almost at the same time Melissa and I said "gimme an RV" LOL...Harley can't even handle sleeping in the backyard and Zac can't sleep anywhere but his own bed at this point...so...It looks like we may have to send our men out camping sometime this summer! They both seemed pretty excited at the concept.

I also met Gerry yesterday...she travelled quite a ways to come out and pick up some small gifts for her children as well...and a neighbor boy. She is a really nice young lady. I am so blessed to be able to help her out this year.

I am looking forward to today...I have my new friend Kerriann and her children coming to visit for a while. The last of the families we adopted is coming to pick up their gifts. Tricia will be coming for a while...that is nice too. I am hoping to make a scrapblog page for the grandparents' Christmas gift this year...I think they would really enjoy that...but we gotta get the pictures scanned in and she is going to help me with that.

We also have to go to Haven's Hope this morning. They have been so helpful and I am thankful that I have made friends at that program as well. I hope someday I can repay them! At this point I am hoping Andrew allows me to go with him to see them...I'd really like to go and thank them in person and give them my update.

Oh and Lindsay called...Channel 9 news wants to interview her to do a story on Santa Swap!! I told her fine, but to please leave my name out of it...I look like hell (especially with this 'new' rash on my face!). The Columbine Courier is running a story next week as well. We are going to be so busy trying to make sure every child has a gift under the tree this year!

Ok, now I am babbling so I bet my pain killers are starting to set in :D I won't be able to go back to sleep at this point...I'm not sure what to do? I guess I could start scanning the pictures in for the scrapbook pages I want to make for the grandparents...

Nope, Lesson NOT learned

I overdid it yesterday too...too much stress going on too to relax...Had to get the letter from my surgeon so that I could reschedule the mediation and they gave me the run around...But finally got me the letter (via fax)...now today I have to get it to the courthouse and copies to the mediator and his attorney. Hopefully the judge will respond quickly so I don't have to pay the $240 fine and possibly be charged with contempt of court.

I'm ready to get my lights on the house...trying to see if someone will swap something for jumping up on my roof....hope so...I'm ready to be in the mood! LOL

With Tricia's help...lots of her help...We got the packages together for the families we've adopted this holiday season...Now to get the stockings done...

Anyways, yeah, lesson not learned....Did 3 loads of laundry, finished going through toyboxes, did the dishes...paying for it today! Trying to wean myself back to one percocet every 4 hours rather than 2 (although I think my body is adjusting to 2 now)...I ran myself into the ground yesterday I was so darned tired by the time 10pm rolled around I didn't even get my ambien in and out I went...Woke up at 3:30 with pain and itching .... found that ice packs will slow down the itch while I wait for the antibiotics to take effect. It's just awful itching!!

Gotta get going so I can find something in the freezer for dinner tonight...Sure wish I had more energy!

Lesson Learned? Ya think? Probably not!!

Well just got up and feeling like spit today...of course having a 4 sneeze in a row fit probably didn't help that...I'll probably be "out of sorts" all day...sneezes tweak my brain I swear...

Anyways...I'm pretty sure I completely and totally overdid it yesterday...and I didn't get half of the stuff done that was on my "to do list"...I never made it to the store to get the last gift that one of the adopted families asked for (just a small gift but still)...I just didn't have the energy after doing all that walking at the doctors (es)LOL offices...I hope I have time to get up there today (Walgreens is about my limit for walking and shopping and I have a $5 off on anything in the store coupon!! WHOOT)....I gotta get my bearings and figure what time the mom is coming to pick up the gifts and finish getting her box of goodies together.

I'm having a hard time standing up straight today though...I haven't taken any meds yet...I'm not looking forward to feeling even worse once I drop my meds :((

Sorry that sounds like I'm whining...well I guess I kind of am...At least I won't be overdoing it today...My body just won't let me...

Update on my long day (arm news at the end!)

Yes, I called the doctor. Of course "we can't diagnose over the phone" as I expected they would say...so in I went for a 1:30 apppointment...Dropped the kids off at Tricia's (see my Family/Harley blog) about the time I was supposed to be at my appointment.

Got seen anyways (*whew*). By now my arm is swollen to twice it's size but not as red and hot as it was earlier in the day. Doctor says I think it's cellulitis (which I thought meant fat, but no, it means skin infection?!?)....I recall no cuts, scrapes or anything else so I'm confused...she was concerned because my heart rate was fast, my lungs were sounding "tight" and my blood pressure was a little high compared to what it typically is...so they want to do an ultrasound to make sure it's not BOTH an infection and a clot...Sit and wait for them to make a stat appointment.

Asked if they could make the appointment at the local clinic (where I already was) or the Ken Caryl one which is 10 minutes from my house...nope, they don't do arm ultrasounds there so I had to head to downtown Denver...for an appointment at 4:15. (it was only 2:30). I was starving (yeah!) and realized I hadn't eaten all day...ate but didn't taste it of course...but still it filled the space in my belly.

The ultrasound showed no clots -- another YAY! I had no idea that prednisone weakens your immune system (in fact I thought it would do the opposite!). I was given a 10 day supply of antibiotics so I told her she may as well give me something for the yeast infection now. I went ahead and refilled the Ambien too...so meds alone today came to $42 and then the $25 for the appointment...at least I didn't have to pay for the ultrasound!! I can be thankful for the fact I have good health insurance (even though I pay for it, I am one of the lucky few with a stable job and get paid well enough to afford health insurance for myself and my husband).

Oh yeah, my hubby is back on his crutches because he's overdone it and put too much strain on his knees again (when will they learn that wives KNOW these things and they need to listen?!)...so he's hobbling through the hospital...I'm dizzy and he looks at me and says wow, you look like you're almost dead and about to drop...Thanks honey...I tried real hard to look good just for you! :))

Stopped to pick up Harley, Tyler and Zac at Tricia's house...Finally got to meet her husband Travis too...he and Andrew are gonna be friends too!! Kelly decided to stay and hang with the girls and David wanted Robert to stay too, but Robert decided to come home and help us out.

I reminded Robert, and will be reminding Kelly that I will be able to stop going to the dr for emergency appointments and NOT end up back in the hospital if they just pick up a little more slack and quit giving me so much slack! LOL....

It's my own fault I keep overdoing it...I really need to open my mouth and not simply write it on the board since they seem to have forgotten how to read...

There's more updates on my day on the other blog but figured you didn't need to read all that here because it's not really surgery/recovery related...

I still have to come back and upload some pics of the birthday party yesterday. I had so much fun (well the kids did too! LOL) and we got some really good pics!!

But right now it's time to say nightnight to my boys and get them down for the night...I may just have to turn in a little earlier than midnight myself...Crap, forgot to take my afternoon prednisone...guess I won't be sleeping any time soon!

Arm Update...

It's strange, the swelling went down.. but Andrew says it looks like a sunburn now and takes up my whole upper arm. I think it warrants a trip to the doctor but this being Monday I would sit on hold with the appointment line for at least an hour...so I emailed my PCP's office with a link to the post with the picture.

it was very itchy too so I am not sure that a clot would be itchy? The itchiness has subsided but it's still red and follows the vein to my armpit. last night a new 'lump of hot red skin" formed near my elbow, but since the swelling has gone down. I am so confused...I'm guessing it could be a bug bite...but would a bug bite move down your arm as the day goes on?

Well at least today is Monday and I can contact a dr with only a $25 copay instead of a $150 copay for going to ER.

What could it be?

Excuse the picture of my fat arm...I had this 'develop' last night...Andrew's worried it looks and feels like a blood clot...I'm not so sure...could it be a spider bite? (I was in the basement yesterday)...I don't really want to go to the ER...It is hot to the touch and last night it travelled down my arm but doesn't look so bad on the lower part of my arm today.
What do you think? Leave me a note? (click comment below) Should I have it looked at today or do you think it can wait til tomorrow?

I really hope anyone reading this and leaving comment says it can wait til tomorrow because I have 15 children coming (and 5 adult women to help!) with Zachary's birthday party!!

I know I'm not keeping up

Recuperation-wise I have not been doing well...I've been pushing...being up on my feet too much...Doing dishes and laundry, lifting...I wrote to the doctor today asking for something to control the pain better. I was complaining that I am having issues with vision in my right eye again as well as pain...and that my teeth are hurting so badly I can't even eat...I explained I can't take 2 percocets because then I can't even keep my head up...this is the response?!

"Tracy,The pain in your face and teeth is to be expected due to your surgery. The dizziness is most likely related to the surgery and the medication. Extreme fatigue is also to be expected for months. This is a difficult surgery to recover from. 1 percocet is probably not enough and Dr. C reccomends taking 2 every four hours to give you adequate relief. If it makes you extremely tired this is fine as you should be resting anyhow. This will allow you to heal and is what your body needs at this point. The steroid (prednisone) should also help with your symptoms. If the increase in percocet does not help, your symptoms progressively worsen, you develop a fever greater than 100.5, drainage from your incision, nausea or vomitting, please call so a nurse can assess you."

So of course I need to refill my percocet in this case...well since it's a narcotic I have to pick up the written prescription from them or my PCP...

Then I asked about the mediation, which is finally scheduled for the 12th of January. My ex's attorney has been...inpatient and could care less that I just had brain surgery. He knows I'm on narcotics and needing to reduce my stress levels and he's still pushing hard. Well, now my doctors office tells me... "I'd move your mediation based on how you feel now. Stress is never a good thing in the healing process." If I try to change it now, he will probably try to file contempt charges against me!

Ok, i know it's a big whine..sorry...I am having a hard time staying down...I just can't do it!

Santa Swappers

I'm not sure how many Santa Swap members read here...I felt a need to explain why, although we are giving away things for the holidays, our house is not decorated in anyway...
First off because of my surgery...it's too hard to keep the cat and the toddlers out of the decorations when I'm on "light duty"
Secondly...don't want to run up my electric bill :D
Third...Harley!! As soon as he sees the tree go up he thinks it's supposed to have presents under it daily. Gotta love his working mind right?
oh and fourth...Zachary's 2nd birthday is this Friday...I don't want him to associate his birthday party with the holidays...

There...I feel better explaining it...I really AM in the spirit of the holidays.

Those that aren't on Santa Swap and want information please let me know. We have expanded the program to Oklahoma and Florida as well! I am so excited! Two local radio stations have responded to the press releases--I am hoping they can get the information added to their community calendar soon!

I keep eating things - lab results and more

hoping I will taste it...and all I can taste is salt....*sigh* soon, patience momma, soon!!

In other news I got my lab results by email today...the clotting tests? Well she only told me they were borderline...well they are 6 pts OVER the high end of normal...my leg still hurts...AND the lab flagged them for further attention.

Then my labs came in from my post op appointment too...nothing flagged by the lab but my phosphorus and chorline are high again...one other thing too...Can't remember...Hope the dr calls to follow up...WITHOUT requiring another in person appointment and thereby ANOTHER copay...Just last week alone we paid...$95 in copays between meds and appointments...

I bet our out of pocket maximum restarts at the 1st of January too...otherwise, we'd be copay free ($2500 a year)...hopefully though (I know I need to check into it) the copay maximum resets in August when it's actually a year!

Hope I can go to my office Christmas Party tomorrow...at least make a token appearance to get my bonus gift card they give out...we don't get that bonus unless we show up...

Ok, Off to take an ambien and try to sleep

Fringe Benefits I guess?

I have discovered benefits of not being able to smell or taste!! I have lost 4 pounds this week! (since discharge from the hospital).

Although I think I would rather have my smell and taste back...ocassionally I get them..but they only last maybe 10 seconds before I lose them again. The doctor said I can expect them back within a year...but it could be permanent.

We will just wait and see....or should I say smell and taste?

Finally Good news!

After spending the last 5 hours at doctors and waiting for doctors and nurses and ultrasounds I finally have some good news!

The bloodwork they did showed 505 for my number. I think she said that the threshold was 495...so it was borderline. They did an ultrasound and found that my bloodflow was actually better today than it was Tuesday...they really want me on some aspirin just in case...but of course I can't take aspirin products for another four weeks.

i'm feeling super edgy and tired tonight so I probably will just turn in early (if the kids let me)....Now Andrew's gonna start complaining because I just can't stand listening to his humming and being stupid making stupid jokes about everything because I'm too far gone to understand and it's just frustrating.

More good news!! LeAnna gave me some foam wedge pillows so I might actually be able to sleep in my bed rather than on the couch tonight.

Ooooohhhh KKkkkkaaaayyyy

well at least I can go to the lab here at 1:00 and then head up to my appointment. My appointment is with a nurse, not even a doctor...I'm sure they will order ANOTHER ultrasound and then leave me hanging for the whole weekend for results...

This just sucks....

Sorry to whine so much...I can't help it...I went to the neurosurgery office YESTERDAY! I had to pay $35 to see a nurse...when I was pregnant with Zac I only had to $5 to see a nurse and $20 to see a doctor. Today I get to pay another $20 to see a nurse...geeze, wish I was pregnant...

Frustration is building higher and higher

While in the shower for my noon appointment, the doctors office called back. They want labs drawn, but not til 1:00. Then they have changed my appointment from 12:00 to 2:30 to give time for the lab results to be there. To top it off, I won't even be seen by my PCP but some other person (not sure if it's a dr or a nurse since Andrwe took the call). Their plan is to have me go to their clinic 1/2 an hour away, get my blood drawn and then sit around and wait for 1 1/2 hours for my appointment....There is a lab less than 5 minutes from the house that can draw my blood and THEN I can head to my appt so I'm not sitting in a waiting room with who knows how many sick people for such a long time!?

Of course, she didn't leave her direct dial number to call back and Kaiser will make you hold 20 minutes just to leave a message so I emailed her to ask if I could get the labs drawn at this clinic and to ask if I am seeing a dr or a nurse...

Hopefully I will get a response soon.

ETA: And I'm kind of frustrated...I sent her an email on Tuesday when the ultrasound was done...it took her THIS long to respond...and NOW it's urgent??!?!?

Going to the dr

Heading out...they want me there by noon....crap!

Update again...

I just got an email from my PCP...she of course thinks I need to be seen. She went on to put me at ease by telling me the ultrasound is not 100% accurate and there could still be a clot.

I'm not trying to be a pill but I asked if it was really necessary to be seen, pay more money (I've already racked up $1,500 in medical copays this month) just to have them tell me "don't know what's causing it". The pain in my right leg is at about a 2 of 10 so it's not that bad. The bigger issue is that my foot feels cold deep in the bone and can't warm it up...but when you touch the skin it's not that cold.

So now she responded back with "my nurse will call you and we will reevaluate that way based on that conversation and decide if you need to be seen".

Great, just as I was gonna lay down for a nap?!

Back from Post-Op appointment

I guess I'll start with news on the blood flow stuff....

Not clot or DVT or SVT but minimal blood flow in my lower right leg. They are not going to treat it and said if it continues to bother me to call my PCP and make her follow up with it. They don't know what's causing it...makes me really uneasy to not know what this is about.

Still on restrictions - no bending, driving or lifting more than 5 pounds til at least Jan 8th, 2010 when I go back to the dr. Continue to expect vision issues, pain, numb teeth, painful teeth, headaches, dizziness, fatigue and everthing else that goes along with it. Not supposed to be walking more than 30 minutes a day.

So I'm gonna try to email my PCP and see if she can follow up and figure it out so far as the blood flow in my leg thing...

Umm, had more to say but can't think...percocet and headaches make my mind cloudy!!

(haha, had to come back and change the title because I had it as Pre Op when it was my Post op!) LOL

Flowers from Pappy & Linda

My dad, (Pappy) and Linda sent me some flowers today! It was so nice...the house/baby stiter (ya know the friendly witch, Marion?) answered the door and then delivered them to me in my room (I was finally taking some time to relax).



I hope you are reading this either here, the other blog or facebook! I don't have your phone number to call and thank you!

I have not seen my dad since just before Harley was born (nearly 13 years). I'm hoping we can meet up and reacquaint very soon! I want to introduce him to all of the "tribe"!

An update...well kinda sorta but not really...

No answer on whether or not I have a blood clot so I am guessing not or they would've gotten back to me...

Got there and got my ultrasound. The nurse I had spoke to at neurosurgery, who said we needed to order it STAT (and did) explained that we would have the results immediately and if it was a clot it could be treated right there and no hospitalization would be required...

Well, I waited 20 minutes in radiology...no answer...the tech said she paged the doctor but hadn't gotten a call back so to go to neurosurgery on the 11th floor...which we did....

Receptionist bitch questioned why they would have the results...umm, let me back up...I don't think I blogged about this...When my surgery was "postponed" on the 20th at 9:00 (when I was supposed to be there by 11) I had called at 1:45 to find out the status of when I would get a time for surgery on Monday. Receptionist ...er...person said it's "not your business and let us do our job"...although they were not even aware that I was not being operated on at that very second or that my surgery had been postponed!!

Well, little miss receptionist with an attitude came out at me today again...well this time it was in person...I hate to be the cause of anyone losing their job just before the holidays but enough is enough...if you're gonna work in a senstitive area like BRAIN SURGERY DEPT you should have some compassion and understanding, not a PMS'd all the time attitude!! Ok, that rant over...now back to the story....

So she comes out from behind her desk and stands in front of me (of course I was sitting because I'm supposed to be non weight bearing until I know if it's a clot for sure and because I am still having balance issues -- worse than before surgery!)..and tells me that my PCP will let me know and that Dr. C is not even in today...it's his day off! I told her I had spoke to the nurse, had just come from radiology and the tech said the report was there...she huffed off and checked her computer (supposedly) and said well, are you sure? the report is not here? Well, of course I am sure you stupid wench (I just thought that, didn't say it!) ... I was just there for the past hour having pain inflicted upon me with an ultrasound to my sore leg! I told her the tech had said it was in dictation and they could retrieve it from there. she went and (supposedly) spoke to the nurse I had spoke to earlier, who didn't even come out to talk to me...and said, nope, your PCP will call you with results.

I told her that my PCP pretty much won't touch my case or give me any answers and just refers me to the specialists (primarily neurosurgery) since she is not familiar with what to do or say and would have to consult with them anyways...so the dr will just refer me back to neurosurgery. She again comes out and raises her voice at me, in the waiting room and states that I should just go home and wait and if there are any results ... if there IS even a clot...I will be contacted by my PCP and not to expect a call from neurosurgery but from my PCP today. I became extremely frustrated at this point and said so this is another case of one department who doesn't know what the other is doing...just like the day I was SUPPOSED to have surgery? Ya know Friday which turned into Monday? she walked away and acted like I said nothing...or even existed!!

I am definitely gonna have to file a complaint against this woman. I'm almost afraid to do that til after my follow up appointment on Thursday though..I don't want to-- nor do I feel like I need to subject myself to--mistreatment by a person whose salary I have a part in paying (after all, I pay over $400 a month for my health insurance premiums ALONE!)...and they won't get her out of there by Thursday...but if I file the complaint today or tomorrow she will KNOW who to mistreat when I get there right? Maybe I will wait til Friday?! That way I can make sure I have her name right...and the spelling too.

Now all the supposedly's I put in there when she said she was looking at her computer or talking to the nurse...I also witnessed this first hand...She was on the phone with a patient when I arrived...she told him she would check his record and put him on hold. She checked in another person, talked to Andrew (since he was at the desk talking to her so I could sit down) and without even consulting the computer or a nurse went back on the line with this other patient and told him that she had "no record of that"....

I think someone is not doing her job...

Needless to say, after all this babbling on my part, bottom line is that my PCP never did call me back to tell me if I had a blood clot or not...nor did anyone from neurosurgery. I guess I am to assume all is fine? They would've called and treated it right away if I did right? At least I would hope so!!

Appointment at 12:15

to be evaluated for the possible blood clot. They will ultrasound it and if there is in fact a clot, they will be able to treat it there and send me home!! No hospital stay they say!

In the meantime Andrew got the afternoon off work to take me...hehehe...it's nice having him home...just gotta get him motivated.

OMG time to head off for the appointment....Beback later.

Hop-A-Long Hubby at the Hospital

ok, looks like I don't get to relax and sleep so I will post one of the stories I wanted to share...a couple of posts back I mentioned about how Andrew injured his "good" knee and ended up on crutches before I went in for surgery...

Now a funny story...we arrived at the hospital to check me in for surgery. I am dressed in my starry PJ pants, a tee shirt and my striped slippers because my other ones from Amanda :) were already packed in the van when they called to tell me to be at the hospital within two hours....

so being the people we are, my hubby's hobbling along on his crutches, I have my laptop strung around my chest/shoulder and he's carrying my backpack. We sit at the registration desk and immediately, they assume HE is the patient....

The volunteer at the registration desk runs off and gets a wheelchair...for HIM!? Haha!! We finish the registration process and are whisked away to the pre-op waiting area...My hubby being escorted in a wheelchair and me walking along side him :))

The volunteer gets Andrew out of the wheelchair and into a waiting area chair just as they call my name...to make it "look good" they put me in the wheelchair to transfer me to the post operative area (around a corner and through a door). Andrew had to stay in the waiting area until I was closer to prep....I felt foolish being in the wheelchair..so as soon as he stopped I hopped up like I was on fire...For some reason the nurse there thought I might be a 'feisty' one?! LOL

The rest of my hospital stay we teased my sweet dear in pain husband...nicknaming him "hop-a-long hubby"...Had to have fun with it ya know? When it came time to leave the hospital I tried to get him into a wheelchair while I walked but we decided to use the wheelchair to carry the bags and let the nurse push that...while we hopped along together into the sunset....

Good News on Zacky!

Well he doesn't have croup! Andrew took him to the doctor (and took Tyler too for good measure)...The doctor said they are both fine, no croup, no h1n1, nothing like that...and that if Zacky's cough is not better by Wednesday to come in again. She said we are doing a fine job trying to treat it ... using lemon tea with honey, nebulizer treatments and vicks vapor rub with a humidifier in their room. She said to keep up the good work and hopefully we won't have to see her on Wednesday. No meds either!! WHOOT!!

Apologies and Admissions

First I want to apologize for not keeping this updated...you'll understand why in just a little bit if I can get through this blog post.

ok, that being out of the way, my admission of the day is: I have totally completely overdone it and I am scared to death I am going to head back to the hospital if I continue...there I said it...you know it takes a lot to admit to that?

BUT Let me explain WHY...Harley had a rough time (can't remember if I blogged about it already, if not, I'll blog about it someday) in my absence...he is home sick from school and therapy today because he had diarrhea...I think it's an irritable bowel issue since there are no other symptoms.

Zac must've caught a cold or something while I was in the hospital. Andrew has him at the doctor now having him evaluated to see if he has croup (sounds like croup, but only by what other people are telling me since out of five children, I've never had one with croup!)

For those who aren't aware that my husband is disabled, here ya go...not a major disability but...14 years ago he had an on the job injury that turned him from an electrician to a stay at home dad. Three years ago he gave me the honor of becoming a stay/work at home mom and he became a certified nursing assistant. The On the job injury caused him to lose the use of his left leg from the knee down but because of his age, they would not do a knee replacement (he is too young we are told!)...Well just a couple of days before MY surgery...not exactly sure what happened...maybe he slipped on a little patch of ice or something but it seems he tore the medial menicus in the RIGHT knee now. He already wears a permanent brace on his left leg to walk and now he is on crutches...hard to let him take care of me when he is in pain and needing medical attention himself. And then add sick kids into the mix? Oy Vey!

Now for something I am proud to say I am a part of that has been taking a lot of my computer time (hence the lack of updates here!) is the Santa Swap Yahoo Group. Lindsay (love you girlie!) called me with this idea one day...we began this yahoo group and it is just amazing what the community is doing for each other. It is so touching and I am so blessed to be part of the movement. The program brings together those in need and those who wish to give...you have a toy your 2 yr old got for Christmas last year that he has since outgrown but barely used? It's still in gift giving condition? Please consider giving it to a family in need this year. Swap with them or just flat out gift it to them. Do you need a food basket for the holidays? Just arrange pick up or drop off and swap stuff...so many families hurting during this economic crisis and we want to make sure every child has at least one gift under the tree this year....Lindsay did her smooth talking and got the local elementary school to support it by letting us use a tax id number to ask for donations from community sponsors. Today we formulated the letter and delivered it to some of the stores in the community. It's a shame...even Toys for Tots are hurting so badly this year for donations they are not even serving the Denver Metro area....

Ok, company stopped by...I'll try to be back later...If you want more info on the Santa Swap group and how to start one in your community, please email me.

A quick update ( a partial copy & Paste,sorry)

I am doing well...easily exhausted...headaches hit frequently and I can't breathe through my nose...but hey, I got a bonus tummy tuck LOL...and it's official--I GET TO GO HOME TOMORROW!! IV's are out, no more catheter!!

I can't wait to see my babies...and see my sweet hubby...and hopefully even get to meet some of the wonderful people my family has had the honor to meet over the last week....Melody, Starr and family, Amy and all the other people I am forgetting to mention!

Please email me back with your snail mail addys if you didn't leave it at home for me...I'd like to get a personalized handwritten thank you letter to you all! Lindsay, Patti and Tricia,THIS INCLUDES YOU! LOL

"Just One More Day?"

I am so sick of hearing that...as i'm sure you guessed, I don't get to go home today...I'm just crushed...and it's out of my control. DH won't bring the little ones to see me, Harley had a major meltdown when he came to visit yesterday...Dh goes back to work today and tomorrow's a "hell" schedule for him...All I can do is sit alone in this room and watch TV...

I just wanna go home...I miss my family...

Please bear with me and my typos

As you can imagine, I have so many updates to make on both blogs. I do not have much endurance and my memory may be lagging in some areas since I am only able to report what has been reported to me. I may just copy & paste, I hope y'all understand...I know some people only read here and some people only read there...

So I guess i will start with my daughter's little shenanigan's...i know she was trying to be helpful though...yes my 16 yr old with just a driver's permit - not an official license -- decided not to wake up dad to get the babysitter...just took the keys to the NEW van and took off down the highway (she's also never driven on the highway). She got herself lost so she pulled over and called Andrew..tellng him she was on the highway and couldn't find the exit. This is how he found out she was not home...at this point it is illegal for her to be driving without a licensed adult in the vehicle. andrew directed her to someone's house that was closeby to where she was and was advised to bring kelly home. This person decided to go ahead and pick up the babysitter...and have Kelly drive herself home in the new van. She managed to do just fine...and we are lucky she didn't get caught...and we know she was just trying to be helpful...

She and Robert got to come and visit me yesterday afternoon. This afternoon both of them and Harley got to come visit. The hospital is not allowing any visitors under the age of 18 past the lobby because of H1N1.

I finally got moved out of ICU today...I made the mistake of bending over to retreive something last night...forgetting that I am not supposed to be bending over..and gave myself a bloody nose...tell ya I've never been so freaked out to get a bloody nose in my life!

i got more things to say and update, but I am already worn out and seeing blurry-eeeyy so I'll have to come back...

Not going to be home for Thanksgiving...

But they are transferring me out of ICU. I'll try to update more later.

Today's Update--so far

Got word this morning that I will be in ICU for another night (tonight)...which means I will not be home tomorrow because I have to spend at least 24 hours in a step-down ward before being released to home. At this point, it is day by day as my diabetes insipidus acts up at night.

I was able to talk the dr/nurses into letting me see my kids today thou. Because of h1n1 no one unde 18 is allowed into the hospital. They will take me outside to see the kids.

I called Andrew to get a time from him and found out that kelly- my 16 yr old with just a driver's permit - not an official license -- decided not to wake up dad to get the babysitter...just took the keys to the NEW van and took off down the highway (she's also never driven on the highway). She got herself lost so she pulled over and called Andrew..tellng him she was on the highway and couldn't find the exit. This is how he found out she was not home...at this point it is illegal for her to be driving without a licensed adult in the vehicle. andrew directed her to someone's house that was closeby to where she was and was advised to bring kelly home. This person decided to go ahead and pick up the babysitter...and have Kelly drive herself home in the new van.

*sigh* once this all gets straightened out they will figure a time they can come and visit with me. Harley will be in therapy and would try to pull my IV out so we won't be able to let him visit...Andrew's afraid the younger ones will have a tough time seeing me and not taking me home...at the very least though I can see my older kids.

So that's really my only update so far today...
(sorry for the C&P LF Mommas).

Update from the hospital

Surgery went well. The doctor confirmed it was a benign tumor and *thinks* he got it all. I have only seen him once since waking up from surgery. They ended up cutting both nostrils andnot going through the roof of my mouth so i am already stuffing my face with yummy solid foods. I am only needing pain meds every 4 hours or so and the nurses think that is great! Epecially since I am taking only 1 percocet and not 2.

I have been having a couple of issues that will be keeping me i ICU for an extra night. Originally I had no urine output. They finally allowed me out of bed to walk to a recliner in my room...NOW I cannot stop peeing and am severely dehydrated (officially called diabetes insipidus)--thank goodness for catheters...since I cannot yet walk as far as the bathroom.

I am also having to stay on oxygen as i cannot keep my oxygen levels high enough. My nasal passages are so congested (I do not have any packing in there) and I cannot blow my nose for 4 weeks yet. Waiting to see if I an take a decongestant so i can at least have a runny nose! (never thought I would wish for that).

Seems I can't stay awake very long right now either. Originally I was told I was doing so well, I might get to go home tomorrow..now I *might* be able to come home ON thanksgiving day.

So that's really all the updates i have..sorry if I rambled:)

Update of Mom :D

This is Kelly the DD.
She wrote this on facebook and asked me to put it up here

Hey All...sitting in ICU with Andrew. Dr "thinks" he got it all and that surgery went well. Output problems and magenisium is low so I will probably have to say in ICU another night. Andrew forgot the camera or I'd post pics...really not bad. They went thru my nose and not the roof of my mouth. Sleepy...More updates later

EDIT TO ADD: November 23, 2010 - a year later
Andrew admits now that he didn't bring the camera for good reason. I am now told that I looked like I had been shot...there was blood all over my hair, my pillow looked like the back of my head had been blown off (his words, not mine)...They explained it was because they didn't want to reposition my head and for 2 days I remained on this bloody pillow...A year later I am learning this...

Finally, surgery is scheduled for 2:00 today..checking in at noon.
St Joseph's hospital

Still no idea on what time

I just called surgery scheduling and was told that they have no clue...that it will be up to the hospital to call me when 'they are ready'...Well I'm at the point that I don't trust the hospital or have faith in my doctor's office at all. I just get this feeling that they will continue to put me off until Tuesday arrives, wednesday...then of course it will be a holiday so maybe next month? maybe next year?

The stress of sitting here waiting not even allowed to have a cup of coffee or a sip of water is going to make me sick and then it will be my fault that surgery won't happen...right?

Sorry I am just super frustrted with this whole situation...and then Andrew not being able to walk just makes my stress even higher...i give up!

things just get so crazy

So I thought I would try to get a couple of days of updates done here.

On Thursday Andrew and I went to our very first childless date night...Thanks to the kindness of a lady named Nikki from Wish Upon A Hero -she had sent us a gift card for $25. I could not read the menu, the lighting was awful and the paper was shiny and the print small. Andrew mentioned that I would be having surgery on Friday and they asked if it was Lasik...so we told them...
At the end of our meal, our server came over with the bill...with a balance of $0.00...The server had told the manager that I was having surgery the next morning and the manager comp'd our meal. Her name is Amy...So if you are interested in going out to dinner..stop on by the Chili's at Cross and Wadsworth.

A big thank you to tricia and her kids for watching our kids on last minute notice so that we could go on our date...

I wanted to get more updates done tonight, but my eyes are not cooperating so I will try to be back tmorrow to make more updates.

I will make a quick post here when/if I get word of what time my surgery will be.

Thanks Sue F.

Sorry I didn't get any pictures this time...I HAVE to get this recipe though! Sue brought over a wonderful delicious chicken dish...drumsticks that she removed the skin and then grilled...then cooked them (in the oven?) til tender and falling off the bone. Drizzled some BBQ Sauce on them...oh my they were delicious!! Robert ate FOUR!!

Also included were some mashed potatoes and carrot/green beans that tasted like buttery garlic.

Thanks Sue!! I will have to get a hold of you for that recipe for sure! (Sure wish I had taken some pics of my littles with their happy little faces!)

Update on surgery scheduling

I guess because of the stress this morning I developed a migraine...I took a nap and woke up about 1:30. The surgery scheduling department still hadn't called me. I called surgery scheduling and the neurosurgeon's office to find out the status of when surgery on Monday would be so that I could schedule child care. No one at surgery scheduling even KNEW that my surgery was cancelled this afternoon. Grh! I called the neurosurgeon's office back and reamed them a new a$$ telling them that I have a special needs child that requires quite a bit of coordination to schedule care and I need to know NOW! As rude as this woman at the office was...someone will be losing her job in time for Christmas if I have my way. (OK, I didn't report her...yet...but she was rude telling me that it wasn't my business to get them moving on this...that my job is to stay healthy and calm down and let them do their job).

I did finally get a call from surgery scheduling this evening just before 5pm (when they close). I am on "standby" for Monday. They are not sure what time I will be scheduled but may know over the weekend, but they have assured me that Monday it will happen. The lady I spoke to at surgery scheduling was very nice and understanding and said the OR may call me over the weekend and if they don't she will call me first thing when she arrives on Monday morning to let me know if they have a definite time. I just have to be ready to go anytime from 6am to midnight to be there within an hour's notice (I live 30 mins from the hospital as long as it's not snowing!). However, even if it's scheduled for midnight on Monday (Tuesday?) I have to be ready with an empty stomach on a moment's notice...that means no food or drink after midnight on Monday (Sunday?)...LOL

I am not necessarily happy with it, but it's a better answer than I've had all day. Andrew is a little worried that they will rush through the surgery though and chance making a mistake (a knick in the wrong place could cause me to lose my vision, or even my life since it's touching the stem of my pituitary gland and near the cartoid artery). I am in touch with some people who are just planning to come over at 6am on Monday and plan to stay through Tuesday or when they hear from Andrew.

This means only two respite days for Harley are being wasted, but I really have no choice if I want it done by Christmas. Andrew was able to call his job and explain what was going on so they put him back on the schedule for this weekend and then extended his time off through Friday (to return to work on Saturday)--where before he was scheduled to return on Thanksgiving day. Hopefully I will be released on Friday because if they wait til Saturday it will have to happen on OUR schedule instead of theirs...

it's been a very long emotional day. Thankfully we had/have some people "on call" that are willing to run errands, do transportation, childcare for the younger children whenever needed. The people who were / are bringing meals were very understanding and one even brought over a cooked meal tonight so I wouldn't have to cook.

Now my sweet dear husband is telling me that it is good because we now have time to clean the carpets...so guess what I will be doing tomorrow afternoon? or maybe tonight if I can't sleep...

Thanks for checking in...Hopefully I'm not boring you all to death with my long, whiny posts!

Doctor Postponed SURGERY!!! Til Monday

and I am LIVID!! Does he not understand all the work and coordination that has gone into this? Does he not understand that I won't have respite for Harley? There's no way I will be able to get that rescheduled with such short notice...The kids will be home from school, so Tyler and Harley will get to see me leave for the hospital...Do they understand that all these wonderful people that have offered to help me now have to be contacted? Do they not understand I get to write a new letter to the judge about the mediation? And that my surgery has been rescheduled? Do they not understand I have FIVE children...and my husband has already scheduled his time off of work? Do they not understand this means I will be missing Thanksgiving with my family altogether? Especially since they won't allow anyone under 18 into the hospital, I won't even get to see my children on Thanksgiving.

I told them to find another doctor who could do the surgery today on schedule and they said they could not...there are no other doctors available. I said ok, tomorrow which of course they said no...Neuro docs don't work weekends...ok...so WHEN? First they told me two weeks...and I told them NO, that is NOT acceptable...so my surgeon called and said he is rearranging his calendar and guaranteed it will happen on Monday. He doesn't have a definite time yet, but the office will call me by the close of business today.

I just can't believe this has happened...This is the THIRD time I've been bumped otherwise my surgery would've happened on Halloween as originally planned...the only difference is it wasn't actually scheduled and then cancelled TWO HOURS before I was supposed to check in...

Yes, I am livid...I am trying to contact the people who have offered help and meals over the weekend and see if they want to reschedule...Lindsay will also be calling some of them so that will help some.

I feel awful

I gave my older kids (Robert & Kelly) the option of staying home today. I know it's going to be rough on them...They decided to go to school anyways thinking it would keep their minds off of things...BUT

They have both called and texted me since going to school that they cannot concentrate. They want to be near their friends and have support from friends, but can't concentrate well enough to go to classes....

I understand completely where they are coming from. I think I will excuse them from their classes today...even though they are both at school. Guess I should call the counselors?

We leave in FIVE hours

for hospital check in. I'm not sure if my husband is allowed visitors in the surgery waiting room while I am in surgery...but if you want to stop by we'll be at Saint Joseph's. I'm not sure how often they will update him but I know they want him to stay in the general area of the waiting room.

And yes, it's only 4:50 AM, been up since 3:15 -- just not able to sleep...can't imagine why?!

I'm going to post a test from my cell phone to see if I can post from there...Lindsay will try to keep in contact with Andrew and post updates on my wall at Facebook as the day goes on.

Wish me luck! And pray the surgeon has steady hands!

Update

Harley's fever broke with no meds by 9:30 yesterday morning. Today is a crazy day trying to get everything ready for the family to be mommy-less for the next five to six days.

I am trying to stay in and have Andrew run all my errands today...can't take any chances of getting exposed to ANYTHING before tomorrow....

Started to hyperventilate last night when explaining to Kelly that they would be putting a tube down my throat so I can breathe...then Andrew's client felt the need to go down the list of everything that can go wrong with this type of surgery....

UGH! Now Andrew's nervous as all get out too...poor guy!

I feel on the verge of tears...Not quite sure why? Maybe because of major surgery?

I will try to get Kelly to keep the blog updated, either this one or the Harleyism blog. I updated my cell service to allow for mobile web so I can check email and maybe facebook, but I'm really slow at it since I'm not very adept at texting...

Thank you everyone for your kindness and well wishes!

No!! not NOW!!?!

Harley woke up with a fever of 100.4 today. He won't be going to school but at the same time I can't have him anywhere near me! I can't take any chances of getting sick and having a fever on Friday morning! UGH! Why now?!

I have face masks and anytime he comes into the room with me, I put one on...We've disinfected the house the best we could this morning before Andrew left for work. If I have to go into his room, I put on a face mask too...I hooked up a converter box in his room so he has PBS kids and Qubo..he has a DVD player and a VCR...the only thing missing is the Wii...Which I really don't want to put into his room....we're having to let him break all the rules and have food and drink in his room....just can't take ANY chances!! Anytime he comes out of his room we disinfect the door knobs and the bathroom. We're even letting him wear a depends during the day today...

Oh please let his fever break...

Thanks Amanda!

We only took pictures of the cute ones enjoying the wonderful meal you made for our family last night. You are an amazing cook!
Zachary really loved all of it, but he thought it was his job to pass out the rolls...and had to taste them first!!

Tyler

Zachary had seconds of the potatoes!

Tyler just had to show off too!

Time for Thanks

So many people to thank already....

Crystal: for being my rock and my sounding board through this whole ordeal...and before!! Thank you!

Lindsay: for getting people together to help me out with meals--and for connecting me with Freecycle all t hose years ago! You are so wonderful...always helping everyone...I am so honored to call you a friend.

Sam: for dropping off meals already...It's really helped the stress levels and now we even have a few meals stored in the freezer.

Marion (who won't be reading this because she's not on the internet): For staying with the boys so Andrew could attend medical appointments with me. For always being there "on call" when we can't get home in time for Harley's bus...For being the "friendly witch" for 12 years!!

Kelly & Robert: for helping with the littles over the past few weeks while Dad and I stress out over the things that need to be done!

Teresa (From Tyler's school): for making contacts and having someone donate free daycare for Zachary and Tyler for the week after surgery when the teens are back in school.

Anne: For calling me today and inviting me to a "girl time lunch"! I am so excited!

Ramee (Harley's RC): for jumping right in and getting Harley's respite increased so quickly..now if only we could find some providers!!

Gina and the staff at Creative Perspectives: For bending the rules and picking up Harley from home for therapies when he is out of school and I am at the hospital. For coming to Harley's BSP meetings...providing specialized support in writing Harley's BSP (Travis) and for Mike meeting with us as a family and confirming that we are really under much more stress than the typical family and that it's ok...For agreeing to meet with the "men" right after surgery!

Patti: for praying with me when I lost my baby in July...and for your reports from school when they were not communicating with me (via your daughter!)...for giving me your number for Andrew to have an ear to bend and a friend to pray with while I am in the hospital and recovering.

Jesse, Kim and Angela: for reconnecting with me...I really do miss family....

Christine S.: for bringing over quiche so I will have something soft to eat when I get home.

Sue F: for agreeing to bring a hot cooked meal for the kids while Andrew's at the hospital with me the day of surgery.

Amy: who has agreed to bring two meals over on Saturday the 20th. I hope I can meet you someday and give you thanks in person!

Dawn B: for agreeing to bring 3 meals to freeze for during recovery! That means a lot too...I am sure I will not feel like cooking (nor will I be able to!)

Connie: who has agreed to bring a meal over on Tuesday the 24th...I may even be home (wishful thinking...but still) to meet you!

Suzanne M: who is bringing Chicken noodle soup and sandwiches over the day I am released for the hospital! I cannot wait to try out that chicken soup...and it's even on my "soft foods diet"!!

Katrina For signing up to bring a meal over on the 28th--Hope I can meet you and we can exchange information so I can write you a thank you note!

Belinda: for bringing lunch over on Sunday the 29th and the 5th and 13th of December--maybe we can have some coffee and chat?!

Sandy R: for signing up to bring over dinner on the 30th and December 11th (Zachary's 2nd birthday!)...I hope to see you again...I know we've exchanged things a number of times, but have always been on the run!

Carlynne for bringing lunch and dinner on the 4th and the 9th--maybe we can spend some time together when you stop by?!

Nancy from Haven's Hope: for helping out financially to pay for the in-home care by Rees--and your prayers too of course!

I still have so many people to contact who responded to Lindsay's call for assistance. It is so touching to know there are so many people in the community willing to reach out and help a mom in need...I do "know" most of you from freecycle (at least I know we've exchanged items as I recognize your email addresses!)...and I hope that I can meet you all in person and thank you!

Interesting Videos

These are videos I ran across on YouTube of Transsphenoidal Surgery (the type of surgery I am having done). Originally I was told that the surgeon would go through my nostril but at my pre-op appointment I was told that they feel the tumor is too large to pull through that way so they will be going through the roof of my mouth and into the sinus cavity.

Symptoms and Diagnosis Process

I went to the dr for dizziness 2 years ago, she looked in my ears and said I had a lot of wax and gave me a script. A year later I went in for my annual exam still complaining of dizziness, and again was given antibiotics.

The vision problems -- blurred vision, blacking out feeling, seeing spots, tunnel like vision have been happening on and off for years. I thought it was due to diet, dehydration, etc and adjusted my diet...still that didn't help.

I have always had tingling/numbness in my feet and attributed that to a car accident I was in where I injured my back and neck.

I started to get shakes and feel "drunk" while walking over this past summer...again I attributed it to the heat, dehyration (I am also not one to run to the dr for things until they are really bothersome).

I could not focus on written word and had been to the eye dr for my annual eye exam in July and was told my eyes were fine. I was told that maybe just a small adjustment but nothing really that would require glasses or affect my vision severely enough to get glasses for driving.

I attributed my problems to many things...then one day in July I went blind while driving. This was such a scary situation I called my dr right away. I blamed it on everything from exhaustion to diet to dehydration to heat, etc....

I had my husband go in with me for fear they would blow me off. I told them I had researched it on Dr. Google and had the EXACT symptoms of a pituitary tumor. Thankfully my dr is a good listener. I took a printout of the hormone tests that need to be run to rule out a hormone producing tumor and she had no qualms about ordering those blood tests. She also ran some other tests that weren't on that list to rule out things like Lupus, vitamin deficiencies and liver and kidney failure. She ordered an MRI to rule out MS and to see if there might have been a tumor.

She also referred me to the eye dr who did another exam to confirm it was nothing wrong with my eyes. He ordered a visual field test. At this point all of my bloodwork had come back as normal (except for high potassium) and my eyes checked out fine so I was in a severe depression thinking I had the same disorder my mother had (called somatatorm disorder, which is basically hypochondriac)...I cancelled my apponitment for my visual field test because I didn't want anyone to think I was as crazy as she had been.

By the end of the week I had the MRI done...I was tempted to cancel it, but went ahead and kept the appointment. I thought for sure my tumor would be a hormone producing one since I had so many miscarriages (10 losses in 22 months) -- and the hormone producing ones are known to cause infertility/pregnancy problems.

It was a long grueling 2 weeks before I got the results...and unfortunately the results were to have it redone with dye because there "was something there, but we need to confirm it with another MRI".

Another 2 weeks went by and my symptoms continued to get worse seems like daily...although I have good and bad days. It seems the more fatigued I get or the more strain I put on my eyes, the worse my symptoms get. I had the 2nd MRI and had the results by the end of the week...a confirmation that I had a tumor...the PCP didn't want to give me any more information than that because it wasn't her area of expertise and referred me to an endochronongist (not to be confused with a reproductive endochronologist -- Totally different drs) and the neurosurgeon.

It took another 6 weeks to get in to see the endo and 8 weeks to see the neurosurgeon. The endo reviewed my case and said that the only treatment for this type of tumor is surgery...had it been a hormone producing tumor it could've been treated with medications. He went over some of the things related to surgery and showed me my MRI. He warned me that side effects of the surgery could be damage to the pituitary gland which could cause diabetes insipidus and/or a need to be on hormone replacement therapy for the rest of my life. He told me to keep the appointment with the neurosurgeon.

This is a hard thing to live with and be blown off for years..it was so hard to believe I had a 3 year ear infection! But with my mother's psychiatric condition, I didn't really pursue it..I have tried so hard to be NOTHING like my mother.

Here's a link to the "official" page that outlines the symptoms and types of pituitary tumors: http://www.mayoclinic.com/health/pituitary-tumors/DS00533/DSECTION=symptoms

It seems the diagnosis took forever...but now I am a short 8 days from surgery and I cannot wait to be able to see clearly and without pain...to not be as fatigued...to be rid of the headaches...and to enjoy the wonderful sunshine again!

Ask away any additional questions...I am not shy :)

I did have the visual field test done recently and also learned I have Pigmentation dispersion syndrome...a flaking off of the iris of your eye and early glaucoma symptoms. However, the eye dr has said that the visual symptoms I am having are not related to this 'dysfunction'. They cannot treat me for this until after surgery but there is treatment available for this as well. I go in for another visual field test just before I go in for my 4 week follow up appointment with the neurosurgeon...that will determine my driving capability and remove my driving restrictions.

Purpose

This blog was created for two (maybe more) reasons...one is to keep volunteers informed of the status of what's going on here and the second is as an informational tool for information on Non-Functioning Pituitary Tumors.

I will attempt to back track to the best of my memory to give you an idea of what signs and symptoms I experienced finally leading up to the diagnosis of the tumor to the surgery to the recovery.

I hope you find this to be a helpful place to find information. While doing my many searches over the months, I have found very little from the actual patients about what to expect on this type of surgery and I am hoping that by documenting it someone will be helped and put more at ease.