Meet neurosurgeon in a.m. re: brain rejection (rephrase: brain/spine rejecting hardware, not rejecting brain) & shunt surgery. Also have H. Pylori testing. Days & tests will drag on to slowly rule out what Dr is worried about-cancer (colon/stomach/pancreas), obstructions, perforations, until we find answer. I wonder if... the drugs I've needed 24/7 the last 5 years to control my brain will end up killing the rest of me.

As the stomach churns

Dr results from Fri p.m. appt: said if I was his daughter, he'd be worried. In a nutshell, he ordered colonoscopy, endoscopy, h. pylori breath test, CT w/iodine, abdominal ultrasound, blood draws, referral for gastro doc. Not a happy camper. Speaking of which, scout camp starts in a few hours. Hopefully we'll find it. Never received directions.

Brain & spine hardware rejection, depression & denial

Earlier this week I was to be seen by a neurosurgeon on his very first day in this town, but he unfortunately did not make it to town yet. So I am seeing someone Monday instead. It is in regards to how my brain is rejection of its 5 inch titanium plate, my spine's two 18 inch rods, and the 36 screws. The rejection has caused my 3 inch loss of height in a six-month time period, which at least shrinking doesn't hurt; the problem with it is that my shrinking is because my loss of 3 inches is because the 3 docs that have reviewed my imaging have determined the only way to lose 3 inches is to lose every bit of space between all vertebrae in the entire spine, from head to tailbone. In other words, they were all able to see that every single vertebrae in my spine is sitting directly on top of one another. From top to bottom all of the vertebrae are rubbing on each other instead of having the usual disc space that allows the spine to flex with the body's movements. So every time I move, all of my vertebrae just grind together, which is the reason I now have so many bone spurs throughout, from the constant bone chipping.

We're also going to discuss the increasing problem with my ICP (intracranial pressure). I'm having more and more episodes of high ICP; for those unfamiliar with it, having high ICP results in problems such as hearing loss, pulsating loss of vision, and vomiting if you move your head as much as two inches slowly in one direction. High ICP puts a huge amount of pressure in the skull, in the brain's blood vessels, crushes brain tissue, shifts the brain out of place, restricts blood flow to the brain, and worsens Chiari herniation (which of course can then impact brain stem responsibilities such as pulse, blood pressure, etc). Normal ICP is 0-10 mm Hg on lumbar punctures; on my 14, I've always fluctuated between 12 and 26. NY was going to do an in-patient monitoring for 2-3 days but that went out the window when something else came up. I've only had instant access LP readings, not the 24/7 intracranial monitoring, where they surgically implant a probe in the brain for a few days to have that 24/7 access to CSF (cerebrospinal fluid) levels. Obviously my levels have never been normal but I'm guessing before moving on to correct my ICP once and for all, that will likely need to be done.

Tomorrow evening I see PCP for stomach junk; this week puts me at a 28 lb loss, so I know I can't avoid it any more. This scares me more than the rest. It's unknown territory. I have no idea what it could be. Have I screwed up something with the piles of meds I've taken the last 5 years? I've already gone to the PCP twice about this but he pretty much brushed it off (this was a couple months back and not quite as severe as it is at this point) as the Chiari, or the meds. That makes no sense to DH or myself since I've had CM for years and been on the meds for years as well; people don't just lose this much weight in a couple months, have vomiting, inability to eat, abdominal pain, etc. And PCP just had to make that passing question about wondering if I'd had a colonoscopy before, saying if it kept up that'd be the first thing he'd personally check, so that's been in the back of my mind, wondering about colon cancer and God knows what else.

Honestly though, I think with everything that's gone on the last year, part of the reason I haven't addressed the health stuff, is with everything added together, that and the frustration of the other ongoing situation, I can finally say I know I should accept some help with it all. But I don't know if I care enough to take that first step and do something about it. It's not like if I go on anti-depressants I'll suddenly be free of disease, surgeries, intractable daily pain. So it's hard to find motivation to admit the need.

Part 2

In regards to the post below, please understand it was written as a way to vent my own frustrations. It was not meant to be a personal attack against anyone in any way, shape, or form. Readers know that due to circumstances, and anyone who knows us personally knows what the situation in our household has been, I'm dealing with a lot of anger issues and that is something that is VERY new to me. The last couple of posts are my first attempts at using this as an outlet to getting it out of my system. My post was also exploring what we are capable of as parents.

As for the food, last month we were hit particularly hard. In a week's time, our HVAC flooded the garage and our shower basically exploded inside the wall, bringing down not only pipes but a section of our living room wall to boot. At $620, they cost the equivalent of 4 months of our grocery budget.

It was a bad month in every way imaginable. Everyone who knows me also knows that one of my biggest hang-ups is not asking for help because I don't want to feel like a burden. I don't want to be that person. I want to be the one people turn to, not the one people see as "needy." I don't like when people are whiny and to me it feels like if I ask for help, I will be seen as needy and whiny, and I can't stand that. In my career I was always the one people turned to to get the job done right. I know my mentality is coming from somewhere deep down I need to explore, but I don't want to. I apologize for any hurt feelings because it wasn't my intention.

Parenthood

It's amazing what parenthood can enable us to do.

When our children are getting MRI's, blood draws, urodynamics, sutures, and look to us for reassurance, we give it to them, though our heart is breaking.

When we go to fix a lunch of the only remaining item in the house, a carton of eggs, only to realize there are only two in it. Assuring the kids you are full, you distract them by getting them excited, offering a "cooking & movie time," letting them cook their own egg with a little encouragement. With their newly discovered cooking skills, followed by eating their dish in front of a movie of their choice, they don't notice Mommy or Papa doesn't have anything in front of them. Mission accomplished.

How long can a couple make it seem fun, rather like a camp out of sorts, the constant creative cooking, the hiding of the frustration when you know they should have so much more, so much better, than the contents of the pantry: cereal (but no milk), peanut butter (but no bread or crackers, rendering it useless unless you want to eat it by spoon), macaroni & cheese but no milk (again, useless).

Three weeks of buttered noodles for every lunch & dinner gets really old, regardless of how many different seasons you experiment with to fool your children. Cut it into little bites, medium bites, leave it huge to have fun, let them cook it, anything for the sake of variety. Go ahead, have a slurping contest. Live it up.

Someday, we will never have spoons of peanut butter, buttered noodles, or handfuls of dried cereal again. At least not because we HAVE to. There will come a day when certain persons have to answer to a higher power for what the position they have put our family in these last 13 months, blatantly going against what every specialist has documented repeatedly, clearly trying to ruin everything we have ever worked so hard for. When all is said and done, there is nothing but the truth. We know it, the specialists know it, and God knows it.

The thing is, those certain persons know the truth as well, but are so lost they they are dead set on destroying a family with whom they are supposed to be partners.

And for that, they will have to answer to God for what they have done. Thinking about that moment is all that gives me the courage to keep up this game with my children, because they do not deserve this any more than we do.

Anger, the evil emotion

I am reading the book, Handle with Care, by Jodi Picoult. This is the 3rd book of hers that I have read in the last month. She has a child who had multiple surgeries in a short period of time, and she clearly understands the absurd, maddening world of fighting insurance companies who are simply trying to line their pockets and don't give a rat's ass about customers. It is relayed crystal clear in the novels.

Picoult also shares the irony of how people wish to make themselves feel better by checking in on a sick person once and then their job is done. Problem solved--at least for them. Guilt resolved, they did their duty.

Here are some personal favorites from Handle with Care, after their 5 year old with Osteogenesis Imperfecta suffers her 50-some-odd fractures, 3 simultaneous compound fractures of both femurs, sustained by slipping and falling when she stepped onto a napkin:

"People ask all the time how I'm doing, but the truth is, they don't really want to know...the whole time they are thinking, Thank God. Thank God it was h er, instead of me."

"...folks who are trying to be kind would rather do it with a macaroni-and-cheese bake...you hand off a dish and you've done your job--your conscience is clean."

"If they really wanted to lend a hand, they wouldn't bring macaroni casseroles...they'd rake the gutters of the house...call insurance and spend four hours arguing over bills..."

And my favorite of all; though this is written as the mother of a disabled child, I can completely understand it from the point of view as a disabled adult. 100%. And it makes me want to spit nails, thinking of the hundreds of contacts I have taken out of my phone book and email list over the 5 years since diagnosis, because looking at me is too much for them to handle. Yet how is it I have still accomplished more with my life than nearly any of them?

"It's superstition: if you give assistance to the family in need...then you'll be immune. Maybe you'll convince yourself that this could never happen to you...Other people look at me and think: That poor woman; she has a child with a disability...But all I see is the girl who had memorized all the words to Queen's "Bohemian Rhapsoday" by the time she was three, the girl who crawls into bed with me whenever there's a thunderstorm--not because you're afraid but because I am...I would never have wished for an able-bodied child, because that child would have been someone who wasn't you."

My husband and I have been letting people know for months now that we're participating in the brain walk next week for the 3rd year in a row. We had a party yesterday to raise funds for it. Considering I've had 16 surgeries, most of which they've been around for (well around 6 hospital stays were in another state, and 2 were in Phoenix, so they couldn't "see" me for those; the rest were local though but for all but 2 nobody ever visited me though I was in for 5-6 days each with the local ones, unbeLIEVably depressing to spend a week alone while DH is working and kids are at school and not see anyone 24/7 for a week).

2 people showed up yesterday. We were pretty shocked. Appreciated it of course, tremendously grateful for their support and had a great time with them, lots of laughs and camaraderie. In our hearts though, it felt like a punch. Where were the other 50? No calls? Emails? Well-wishes? Sorry we couldn't be there but good luck, let us known how it turns out, we know how important this is since it's what is KILLING you?

Yeah. That little part. Killing me. God forbid someone TALK about that. If they talk to me to RSVP they may actually have to look me in the eye. GASP.

I am something besides a brain patient you know. I am a mother. Remember that? I have an 8 year old little boy. He loves Transformers and Nerf guns and hates bullies and loves his glasses because it makes him feel like Harry Potter. I also have a 7 year old daughter who kicks butt at karate, has no social graces, and can make you bust a gut laughing when you least expect it with her commentaries on life with vocabulary that could rival any high schooler. I'm an avid crocheter and love to sew as well. Are people afraid of me, think I sit at home and cry all day? Get real. I don't have time for sitting with my thumbs up my ass, weeping and moaning. It won't heal me, it won't extend my life, it won't make the quality of my life any better, so get on with it. I do what I can, when I can. When I can't, I don't, but I'm sure not going to sit and cry about it. Moving on.

But I have so much anger pent up over the last 13 months from something my family is going through that I cannot write about, that I am pretty much a big bottle of anger from it. It is magnifying everything else in life and bringing it to a head, including 5 years of dealing with people who refuse to deal with problems in time so they can be able to talk face to face and have a relationship with a person who may not by here by the time they got around to it otherwise. I like friendships. I like knowing people. I find I learn something from each person I know. It's why I so greatly enjoyed my life as a teacher.

Before you go judging me that I am pushing people away too, I am also angry at myself. I am angry that people are putting the people I love in this position, when people are supposed to be partners. When friends do this, what do they do to their enemies? In this case, it is truly a terrifying question and I must leave it at that.

As for the people with whom I have been putting up walls around me, what started as guilt has turned into a tiny bubble, the possibility of anger. I don't want to think it. I don't think what was done was meant. A wonderful gesture was given, no strings attached, at one point. Maybe we shouldn't have accepted, but the younger my kids have been, the more I wanted them to reach an age where they would have memories of me that when they were older, they would know that the memories were valid, and not just something they conjured up based on stories they heard adults tell about me. I have never wanted to still be here, not for a long time now, not with all this intractable pain that there is no answer for, will never be an end to, not when it is all system wide. But I accepted that one (and did the few local after that) because of my kids.

And nothing changed here. There are a couple of good folks I am proud to call friends who are still there despite me not usually being able to be out of the house. They accept that and understand why. But it occurred to me: was that gesture given to me that time, WERE there strings attached, but for the people who gave it? Was it rather like one BIG macaroni and cheese dish? A way to not get too involved, to just let US do it, "if you don't step on the cracks, maybe you'll be immune. Maybe you'll be able to convince yourself that this could never happen to you."

I don't like to think it, but what else am I supposed to do with these thoughts? There's no one sitting here, now is there?

Anyway while I'm here, next week's our 3rd annual brain tumor walk. Here is where people can donate to our team, which would be greatly appreciated. Thanks!

Taking control

I had my monthly neuro appointment today and instead of being scheduled for my 2-3 day in-patient stay at the hospital as we were planning, NL came in and said he'd been thinking about me since shortly after I left last month. Something occurred to him suddenly and it's stuck on his mind; what he thinks has been going on for the last year and a half is completely different than the route we have been approaching, to say the least. It was a surprise, definitely made me raise my eyebrows and my jaw drop, but after stopping and staring at him for God knows how long, I think he could very well be right. What he is saying seems to make sense.

What I have been experiencing have absolutely been presenting as one thing, but it suddenly occurred to him that given the extent of damage to my brain stem from all the surgeries and the progressive scar tissue that is growing like a cancer in my brain, my body is only acting/presenting like this disorder every day. The key has been in something I have, ironically, said in the past to friends before, as it's been explained to me: the reason anti-seizures haven't been working is that I don't actually have a seizure disorder, since the seizures technically seem to be caused by the scarring.

We had no idea just how close with that statement we were with that statement. There is potential now after a year and a half of this keeping me hiding out, of finding the answer. I'm being scheduled to go stay for my testing in a couple weeks. If it's positive, there is no cure, since the problem still will be an unusual variety in that for me, it'll have been caused by my brain stem difficulties. There will be a lot of medications to try to control it, which isn't great, but it's a start.

And a diagnosis arms me with knowledge, which makes me feel stronger and more in control, even if the truth is that it is more in control over me...but shh, it doesn't have to know that any more after I at least try to be in charge of something in my body.