the things that drive you crazy

well yesterday Brian decided to see the dr. by himself..which I am a big supporter of....but he has some memory issues on top of the general asperger issues...so when he came out from the doctor, he had a list of vaccines the doctor wanted him to get (this is a new GP remember)
I said to Brian..did u mention your spleen is enlarged and we're in a diagnosis stage?...NO....did you mention you had a stem cell transplant..NO....

bang my head against the wall and call me done....

today we took him for the lab work the gp wanted him to have to make sure his depression isn't from something else. I didnt even bother to ask Brian if he explained why he wanted/needed the medication, I already know the answer.

I think that we're just going to let Brian manage his visits wit hte gp on his own..no micromanaging..if it takes 500 visits to get to where it needs to be. so be it...

the oncology visits....yeah not so much...I'll still be glued to his side on those...

pics to share

sorting thru my computer files...gonna share some pics...they are older ones,( some many years old)  I might have posted a while back...but still nice ones :)   of both kids....
Stephanie got hurt at work last night and ended up in the ER with a concussion....and ppl wonder why I am am crazy nutso...
Brian goes to the Dr. tomorrow to discuss meds for the bipolar and depression....I am hoping he will take their suggestions. Even something to take the edge off would help my burden...

4 am thoughs

4 am...my favorite friend...insomnia...went to the kitchen to find it a mess...not sure if that was Brian or Scott...dishes, pots...wow...it's funny the things that make me crazy now...and I am never quite sure what will   do it...
I think it's just a week...I went grocery shopping yesterday and the food prices keep going up..and the gas prices keep going up...the house phone bill went up so I got rid of it...my cable is pared down as far as it can go...and it keeps going up....we only have basic and Internet...my electric company just got a rate increase...and the whole house is electric....water company got an increase last year....our taxes went up, our HOA's went up....

Scott got a $0.20cent an hour raise...

we get some disability for Brian but it doesn't even cover his food much less anything else...I have enough medical problems to qualify but I haven't worked enough in the last 10 years to collect (why not, oh yeah because I have been sitting in a hospital or taking care of Brian when he isn't in the hospital)

I do not know how we are going to make it. I don't know how other's are going to make it.

if you have some helpful ideas....please shoot them my way...but keep in mind they have to be practical and flexible...

anyone want to come help put some more garden beds in?....I need to grow more food

I hate the middle of the night panics....

update

I got a lot accomplished today....spoke with Dr. Nasta who consulted with the surgeon. They have decided to rescan in a few weeks and reevaluate the biopsy. The concern is causing unnecessary trauma.

I made an appointment for Brian to see a doctor for his bipolar...he feels strongly he needs an anti psychotic medication...and while I don't know if he needs something quite that strong, he does need some medication.

His glasses are ordered..we did go with an online company..the difference in price was just too much not to try.

and...we switched his medical assistance program as the one he uses will no longer cover him as of the end of the month. However....I am concerned by the notification we got that he has to go an entire month without coverage...which will include 2 dr. appts and a scan...that would mean a huge medical bill for March, so I am trying to get an answer to that...but the following is the print out I got from the pa web page were you make the switch


2/19/13 PA Enrollment Services
https://www.enrollnow.net/PASelfService/faces/secured/Change.xhtml 1/1
<Summary
Thank you for enrolling! You may print this page for your records.
BRIAN MCCOLGAN > Recipient ID ( I removed his number from here just for privacy issues)
Date of birth: Jun 21, 1986
Health plan chosen: Amerihealth Northeast Health Plan (HC-NE) - effective 3/1/2013,
Doctor chosen: LVPGPLEASANT VALLEY FAMILY PRACTICE
You can start using the health plan on: Monday, April 1, 2013

update frustration

So...we met with the surgeon....he is concerned with doing a biopsy of the lympnode because of it's location and size. He feels like if it is the lymphoma we'll have a larger node soon and if it is an indolent malignancy of another kind well then they don't respond well to chemotherapy anyhow. (his words ) (got to love the medical professionals either they blow sunshine up your bum or pow right in the kisser)

He is going to converse with the oncologist Dr. Nasta and what she decides is what he will do.

And this couldn't have occurred BEFORE the long and annoying drive?....these are the type of things that frustrate me. 6 hrs in a car for a 30 minute consult during which aside from a refreshing frankness (I am not into sugar coating at this point anyhow) Not a darn thing was decided except to tell me the dr.'s need to talk.

I'm tired, I am crankified and we're all frustrated that we've been left in limbo land ... His suggestion was another scan in March....
we still have unanswered questions....about the spleen..platelets...

while I can appreciate a good and accurate diagnosis takes time, we've had these irregular test results since October now...

I want answers damn it and ice cream...definitely ice cream ....

off to Philadelphia tomorrow

So we're off to Philly tomorrow...we're leaving a little early because of potential weather mess. The surgeons name is Giorgos Karakousis...and yes, I'll be practicing that on the way down....don't want to mispronounce...and it's quite tongue twister.

Hopefully they will get everything done in one shot so next trip will be the biopsy....it has never been handled like this before so I'd be lying if I didn't say the change in procedure that we've been through before is somewhat concerning...however Brian's previous biopsies did occur after admittance to the hospital..all 3 times so maybe that is the difference...IDK...

His toe is infected again..it is just not healing...we're going to have to get that looked at too...again...

I am pretty sure dashing thru the snow didn't help.

probably won't be much to update tomorrow night..but maybe a new schedule....

special thanks

Today I want to thank a special person who decided to help raise some funds to asst us with Brian's expenses. Bill Haller...Bill introduced me to Dubstep....a very amazing and interesting form of music that I enjoy...he is obviously very talented from the things I have seen, and funny..some of his facebook posts with his wife are just hysterical....They are with no doubt kind and genuine people.

http://www.youtube.com/watch?feature=player_embedded&v=rvh9-TQ6IYI

Here is a link to his new video from his show....I am humbled by his caring
 ( and his dps ...)

Thank You Bill and Nathalie





I also want to thank our friend and neighbor Jim for coming and clearing my driveway of all our snow just in case I have to get out or have an emergency, He knows Scott doesn't always make it home from work in bad weather and
I really appreciate what does.
Thanks Jim

I also want to thank my very good friend Lynn....she was our neighbor and there in the begining when we got started down this rabbit hole of surprises...she has all along helped us out in many ways. Always the first to jump up and help people. She is one of the best people I know...
Thanks Lynn


It doesn't always seem easy or fun, but in many ways we are lucky, our long journey abet filled with many pitfalls, sacrifices, tough decisions, and STRESSSSSS ...we have had the honor and privledge of meeting some great people along the way. They even look the other way during those periods of time when my head spins around on my neck like a bad horror film  :)

todays lesson on neuropathy

Sometimes it's the side effects of all the chemo that Brian has had that we have to deal with. In 2000-2003 Brian got a chemotherapy drug called vincristine....not only did it increase the likely hood of sterility but it also left him with nerve damage in a variety of spots. One of those being his feet...while this picture IS amusing and one of my favorites, it also shows how cold/hot/pain work differently on Brian. He SHOULD know better...but because Brian is ALSO an Asperger's child (adult) he thinks it's just cool that he can run around in the snow barefooted....

A mother's work really IS never done.....sigh...

Friday 2/7 update

Can we say.....SNOW STORM :) wooohooo

I'll be 50 years old in a month and nothing makes me smile like snow....I love it.

I just hope all the roads are clear for Monday....I don't want a long drive to take longer and there is no way I am willing to risk another postponement.

I put some new items on Etsy and I will be listing more to ebay this weekend...

I don't know if I mentioned this but Medicaid is dropping the plan Brian is on, so I have spend that last few days trying to get in touch with all his doctors to make sure we choose a new plan that they all accept. The nightmare that is...yikes..it would be so much worse if we had to change a doctor.

So I expect we'll get a biopsy date on monday after all the testing and meeting with the surgeon. This biopsy seems so formal in it's scheduling...not sure why....maybe just because it is at a different hospital then the previous ones have been.

ok...so monday night update if I am not too tired...if not then tueday update.

oh to save some money, we turned off the house phone, so we're on cell phones only...if you need to be in touch.

update and announcement

Sorry..things here were busy...so we had an ice storm and had to postpone meeting with surgeon until 2/11....this is like the 3rd time weather has made a trip get pushed back...just another issue we have to deal with traveling to Phila.

Brian is tired, his last labs still showed low platelets..but not so low to be concerned....he enjoyed a day out snow tubing (little hill max fun minimal risk) with his sister and her fiance...YES....FIANCE....


Stephanie got engaged tonight...of course everyone knew but her..made it even funnier...a nice happy note in the midst of all the chaos...

the day snow tubing really boosted his spirits, he's been a bit depressed lately...