Chiari Malformation

2009-11-08T21:53:00.001-07:00

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

2009-11-07T02:04:00.001-07:00

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

2009-11-05T09:15:00.006-07:00

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

2009-10-27T19:27:00.002-07:00

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

2009-10-25T21:53:00.008-07:00

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

2009-10-18T22:58:00.002-07:00

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

2009-09-30T23:57:00.003-07:00

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.

Not one of my "patient" readers? Count yourself lucky

2009-09-01T20:44:00.000-07:00

LETTER TO PEOPLE WITHOUT CHRONIC PAIN:

Having chronic pain means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about chronic pain and its effects, and of those that think they know, many are actually misinformed.

In the spirit of informing those who wish to understand ...
... These are the things that I would like you to understand about me before you judge me...

Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I probably don't seem like much fun to be with, but I'm still me-- stuck inside this body. I still worry about school, my family, my friends, and most of the time - I'd still like to hear you talk about yours, too.

Please understand the difference between "happy" and "healthy". When you've got the flu, you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time. In fact, I work hard at not being miserable. So, if you're talking to me and I sound happy, it means I'm happy. That's all. It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. Please don't say, "Oh, you're sounding better!" or "But you look so healthy!¨ I am merely coping. I am sounding happy and trying to look normal. If you want to comment on that, you're welcome.

Please understand that being able to stand up for ten minutes doesn't necessarily mean that I can stand up for twenty minutes, or an hour. Just because I managed to stand up for thirty minutes yesterday doesn't mean that I can do the same today. With a lot of diseases you're either paralyzed, or you can move. With this one, it gets more confusing everyday. It can be like a yo-yo. I never know from day to day, how I am going to feel when I wake up. In most cases, I never know from minute to minute. That is one of the hardest and most frustrating components of chronic pain.

Please repeat the above paragraph substituting, "sitting", "walking", "thinking", "concentrating", "being sociable" and so on ... it applies to everything. That's what chronic pain does to you.

Please understand that chronic pain is variable. It's quite possible (for many, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the next room. Please don't attack me when I'm ill by saying, "But you did it before!" or Oh, come on, I know you can do this!" If you want me to do something, then ask if I can. In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are--to be physically able to do all of the things that you can do.

Please understand that "getting out and doing things" does not make me feel better, and can often make me seriously worse. You don't know what I go through or how I suffer in my own private time. Telling me that I need to exercise, or do some things to get my mind off of it¨ may frustrate me to tears, and is not correct if I was capable of doing some things any or all of the time, don't you know that I would? I am working with my doctor and I am doing what I am supposed to do. Another statement that hurts is, "You just need to push yourself more, try harder..." Obviously, chronic pain can deal with the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense. You can't always read it on my face or in my body language. Also, chronic pain may cause secondary depression (wouldn't you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.

Please understand that if I say I have to sit down/lie down/stay in bed/or take these pills now, that probably means that I do have to do it right now - it can't be put off or forgotten just because I'm somewhere, or am right in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.

If you want to suggest a cure to me, please don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. Lord knows that isn't true. In all likelihood, if you've heard of it or tried it, so have I. In some cases, I have been made sicker, not better. This can involve side effects or allergic reactions. It also includes failure, which in and of itself can make me feel even lower. If there were something that cured, or even helped people with my form of chronic pain, then we'd know about it. There is worldwide networking (both on and off the Internet) between people with chronic pain. If something worked, we would KNOW. It's definitely not for lack of trying. If, after reading this, you still feel the need to suggest a cure, then so be it. I may take what you said and discuss it with my doctor.

If I seem touchy, it's probably because I am. It's not how I try to be. As a matter of fact, I try very hard to be normal. I hope you will try to understand. I have been, and am still, going through a lot. Chronic pain is hard for you to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating. Almost all the time, I know that I am doing my best to cope with this, and live my life to the best of my ability. I ask you to bear with me, and accept me as I am. I know that you cannot literally understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try to be understanding in general.

In many ways I depend on you - people who are not sick. I need you to visit me when I am too sick to go out... Sometimes I need you help me with the shopping, cooking or cleaning. I may need you to take me to the doctor, or to the store. You are my link to the normalcy of life. You can help me to keep in touch with the parts of life that I miss and fully intend to undertake again, just as soon as I am able.

I know that I have asked a lot from you, and I do thank you for listening. It really does mean a lot.

AUTHOR UNKNOWN
**********************************

TIPS FOR DEALING WITH PEOPLE IN PAIN
1. People with chronic pain seem unreliable (we can't count on ourselves). When feeling better we promise things (and mean it); when in serious pain, we may not even show up.

2. An action or situation may result in pain several hours later, or even the next day. Delayed pain is confusing to people who have never experienced it.

3. Pain can inhibit listening and other communication skills. It's like having someone shouting at you, or trying to talk with a fire alarm going off in the room. The effect of pain on the mind can seem like attention deficit disorder. So you may have to repeat a request, or write things down for a person with chronic pain. Don't take it personally, or think that they are stupid.

4. The senses can overload while in pain. For example, noises that wouldn't normally bother you, seem too much.

5. Patience may seem short. We can't wait in a long line; can't wait for a long drawn out conversation.

6. Don't always ask "how are you" unless you are genuinely prepared to listen it just points attention inward.

7. Pain can sometimes trigger psychological disabilities (usually very temporary). When in pain, a small task, like hanging out the laundry, can seem like a huge wall, too high to climb over. An hour later the same job may be quite OK. It is sane to be depressed occasionally when you hurt.

8. Pain can come on fairly quickly and unexpectedly. Pain sometimes abates after a short rest. Chronic pain people appear to arrive and fade unpredictably to others.

9. Knowing where a refuge is, such as a couch, a bed, or comfortable chair, is as important as knowing where a bathroom is. A visit is much more enjoyable if the chronic pain person knows there is a refuge if needed. A person with chronic pain may not want to go anywhere that has no refuge (e.g.no place to sit or lie down).

10. Small acts of kindness can seem like huge acts of mercy to a person in pain. Your offer of a pillow or a cup of tea can be a really big thing to a person who is feeling temporarily helpless in the face of encroaching pain.

11. Not all pain is easy to locate or describe. Sometimes there is a body-wide feeling of discomfort, with hard to describe pains in the entire back, or in both legs, but not in one particular spot you can point to. Our vocabulary for pain is very limited, compared to the body's ability to feel varieties of discomfort.

12. We may not have a good "reason" for the pain. Medical science is still limited in its understanding of pain. Many people have pain that is not yet classified by doctors as an officially recognized "disease". That does not reduce the pain, - it only reduces our ability to give it a label, and to have you believe us.

author unknown

Social Networking & Denial

2009-07-23T09:48:00.013-07:00

A couple friends wanted me to set up an account at Facebook so they could follow my health stuff more often. I wanted to say, "About everyone knows about this blog. Discovery Health Channel even knows about it and was able to locate and call me on my cell phone, is it that much trouble to add one more tiny little website to a bookmarks list?" At the bottom corner of the blog people can see the many countries where readers follow this blog, a surprising feature. When my friends asked, I felt they wanted to keep in touch with those who post within their networking page and if I'm not part of that, then it's too much extra work to follow my health; all this despite the fact that my blog has been in existence for 5 years already since I was diagnosed, long before these social sites, but why should I have to write everything twice? I gave in though, and am trying to link the accounts.

The reason I finally joined is because someone feels that if our local (church) group doesn't see me, then they probably assume I'm doing fine, and all of you regular readers know that is far from the truth. Anyone approved for 20-30 hours a week for home care through the county home health/hospice agency, anyone with 24+ uncontrolled seizures a day, after 16 surgeries, is not fine. Of course now I can't get the services since we're losing our insurance after what happened to my husband. But out of sight, out of mind I guess. So anyway, we thought if I came to the social networking site, and started talking about my days, they might get a clue.

I will say it's been interesting. People put notes about their children, clothes, coming home for the evening. Others agree, make some comments, play some trivia games. I share about hitting my face four times recently after either passing out or seizing (still don't know which, impossible to know when you're unconscious), ending up swollen, & you can guess how many comments I receive. Up go the blinders. Maybe somehow everybody managed to not see what I said?

What one woman said to me after church service when I visited after a year's absence (attendance is incredibly difficult physically, so I rarely attend) changed a lot of things for me, and not for the better. It was an unbelievable case of "Open Mouth, Insert Foot," but she was honest enough to SAY it and at least she acknowledged my existence:

"I know I haven't kept in touch with you over the last year, but it's just too hard for me. I don't like to see what this has done to you, and of course it also reminds me of Karen ***** too, so I just haven't."

My jaw about hit the floor. I didn't know what to say because I wasn't sure I'd heard her right. Did she actually just admit she had been intentionally ignoring me, knowing I was trapped at home, 24 hours a day, 7 days a week, full time for more than a year, while she went about her business? Yeah, pretty much.

Must be nice. I don't get the option to ignore my disease. I would LOVE to, trust me. I would give my right arm, give my vision, give them BOTH to have one day without pain, OR one day without a seizure. I'm not even asking for one day without both; that would be too much to ask. I remember having my, I think it was my 9th, lumbar puncture/spinal tap with extra CSF withdrawal. It relieved my intracranial pressure so greatly that I had almost no pain for 3 hours, other than the spine site where the LP was done. Then after the 3 hours the pain came raging back, since spinal fluid replenishes itself throughout the day. I nearly had a breakdown, and to this day I wish I had never had those 3 hours. They did nothing but show me how very altered my life had become. I had actually forgotten what it was like to not have pain, until I experienced those 3 hours. That small bit of time without pain was nothing more than a sick joke, and I wish to God I had never even had it since I can never have it again.

After bending over in my wheelchair and retrieving my jaw off the floor, I slowly said to her, "Um...Thank you for your honesty???" And thankfully at that moment my husband came walking over from his conversation with someone else and whisked me out the door and that was that because I don't know what I would have said next.

That was one year ago, and it was only last week that I told him of that conversation--if you can even call it that. We both agree that she surely did not mean to hurt my feelings, and in her own way was trying to apologize for not keeping in touch, but that the words came out horribly wrong. If she knew that I have been stewing over that statement for the last year, and it has kept me out of church on days when I would have at least liked to try to go sit through my physical pain at the service, she may be surprised. It's possible she hasn't even thought of her words ever again. I do need to discuss it with her to free this from my system, but for now, I need people to understand:

Those of you who know someone who is home bound, consider your work day. You have tasks to pace yourself through. You have goals, an end in sight, people to talk to, even if you do not care for them. There are changes in the scenery so to speak.

We have four walls around us that never change, and often even getting the mail is out of the question because that is too much of a strain. Getting our own mail would be a treat, instead of having to depend on someone else. There is no one to talk to. There is no task, no goal, no way to pace ourselves (unless you count 22 pills every 4 hours as being a step closer to the end of the day, often it's that desperate for the day to end), no calls to know we are not already forgotten and may as well already be gone, so why not give in to the temptation to take those few extra that would do the trick. We think it'll be different when the inevitable hospital stays come, because one of the church growth classes taught us a few years ago that a good general rule is to visit church members if someone has to be in for more than 2 days, but with all of my stays only 1 person has followed that rule; she has come every time. Do they think because I have had 16 surgeries that I must therefore be used to being in the hospital, so why bother visiting? Well that just makes it even worse! Being taken into the OR so many times, putting myself onto the OR table, giving my arms over to be strapped down, it has all resulted in me being diagnosed with a significant case of Post Traumatic Stress Disorder. Every time I go for surgery, by the time I get to the Pre-Op room, I throw up, bawl, and hyperventilate. What else can you expect after so many surgeries which have resulted in CPR, being on a ventilator, and an emergency c-section with 45 seconds' notice with zero medication. I have nothing but hatred for being in hospitals. Every second, every minute, serves as a reminder that my body has betrayed me which ultimately I can handle, but there is not only the physical pain to deal with, but worst of all about being in the hospital and not seeing anyone is the constant reminder is that I have yet again been abandoned and when I am gone, what is the point of having gone through any of this? Why should I even try?

My greater concern is for the woman who made the surprising comment to me, for people who intentionally ignore me to make their lives easier by living in denial; yes it may be easier on them now, but what happens when I am gone? I will be at peace, but everyone who has lived this way is going to have a whole lot to deal with because of having refused to look me in the eye, and in doing so, have refused to deal with your own emotions.

So, that's why I've joined the group. My pastor once said I had the capacity of helping the group learn to deal with their fears by facing my situation. As I've progressed, they have not had to see any of it, and it's high time to deal with it. All of us.

Surgery 16 update, ER trip, seizures & such

2009-07-09T18:39:00.004-07:00

I made it through my 16th surgery about 6 weeks ago. I had a post-op check today; it was originally 2 weeks ago but they said I hadn't made enough progress and made me come again this time. Thankfully two weeks made the difference though! My incision is behaving well, contrary to what Ehlers-Danlos would like for it to do.

My seizures over the last year have done nothing but worsen despite getting up to 600mg on Topamax. After things seemed to even out with the surgery, I had Keppra added on to my medication routine a couple weeks ago. I quickly noticed my headaches were increasing, and badly. I developed a low-grade fever and had bruises all over, more than normal anyway.

They hit a peak earlier this week on Monday morning. When I woke up, I immediately noticed the noise in my ears was bad enough I couldn't really understand what my husband and children were saying. I couldn't eat, was dragging, and in tears all day. My husband that night tried to get me to go to the ER and I would have agreed but for the 7:30 a.m. dental appointment both of our children had the next morning; we are losing our insurance this month and this appointment was to lead to dental work, so it couldn't be delayed. He knew though when I didn't fight going in after they were done, it must be bad. I usually save hospitals for surgeries and cut arteries. Our plan was for me to accompany them to the dentist, find somewhere to take the kids right afterward, and take me in.

By morning, the vomiting hit. There was no way I could go along. My friend came over and took me to the hospital while my husband and children were still gone, and stayed at the hospital with me the entire time. I didn't even have to sit down in the lobby, when I told the girl through the window that I'd had multiple brain surgeries and it felt like my ICP (intracranial pressure) was up, that I'd had 24 hours of hearing loss and vomiting, they instantly brought me in to triage where it showed my heart rate was wonky, then straight to the windowed room in front of the nurse's station.

I got the usual lines for fluid, pain control, and nausea control. I went for a CT, had the usual blood and urine tests. In a nutshell, I don't agree with the Keppra and stopped taking it. I also have a urinary tract infection, which of course didn't cause this whole thing, but they said it's severe enough that they wouldn't be surprised if it was adding to the pain. So I'm on 1500mg of Keflex for the UTI as well.

As for the seizures, the thought has always been that they are due to the fact the right half of my brain is tangled up in scar tissue from my 9 month bout of meningitis from the fiasco of a brain surgery at THAT place in Phoenix.

Now though, after a year of not only no response to anti-seizure medications, but continuous worsening of the seizures has my neuros now believing they are originating not from my tangled up right half of a brain, but instead from my equally scarred up brain stem. It does make sense, but it is not really news we want to hear.

That's pretty much all I wanted to update on today. It's been a long week and I'm tired, still dragging from the events of two days ago (my children actually ended up having three teeth extracted between the two of them at that appointment when I was at the hospital, it was bad enough the dentist wanted to deal with it right then and there) so I'm going to sign off for now. There is a whole lot more going on than this, boy is that the understatement of the year, but I'll leave it at that for now. Prayers or thoughts would be tremendously appreciated for our household.

Under the Knife Again

2009-05-08T17:29:00.004-07:00

I'm having surgery again next week, my 16th. At least this time it does not involve shaving my head. It does however involve a lot of risk, a big incision, general anesthetic, and around a week in the hospital.

I'm also having my first mammogram and an ultrasound because of what we hope is just a small thing. I'm nervous but not much I can do about it. So, first things first, one day at a time.

Help Find Laura Nimbach

2009-04-23T21:55:00.007-07:00

This is the Laura Nimbach, sister of a crafting acquaintance I met. Please consider posting this at your blog or social networking site. I know this is not related to my blog's goal but there is nothing more important than family and I know we all would take so simple a measure as sharing a missing persons flier in the hope of spreading her photograph and word about the situation. Let us find an answer for this family.

Assistance Dog update

2009-04-08T14:34:00.006-07:00

For anyone late in the game, my Rhodesian Ridgeback Shelby has 2 certification levels already, and is currently working on her 3rd. She is my assistance aka service dog. Due to the nature of my disorders, she has to cover a lot of needs. She is not only a mobility assist dog (when in scooter, she will retrieve dropped items, empty clothes dryer so I can fold, open doors; when in manual chair, help pull, retrieve items off shelves, you get the idea). She is on seizure alert duty 24/7; this is a tough one because of my seizures often running back to back.

I have a couple dozen seizures a day but on one particularly extreme morning, my husband took a great picture I going to share here that I feel shows well the relationship between an assistance dog and their person. Shelby normally sprawls across my lap a few minutes before a seizure starts to prevent me from going anywhere, falling, and getting injured. That morning though instead of sprawling on my lap, she tucked herself up against me, face to face. She stayed like this for more than an hour, until it was over.

March marked one year since we rescued Shelby from the Humane Society, a brutally abused one year old girl, terrified of her own shadow. I'd never had a seizure then, and my husband and I thought we were crazy for going from 1 little old Yorkie Wolfie at home to 3 dogs (that day we adopted not only Shelby but crazy Cairn Terrier Gizmo). We were drawn to Shelby and our hearts knew we had to bring her home. A month later, my disease progressed into seizures and I’ve had them daily ever since, and she could detect them before we could.

Now we know why Shelby came into our lives a year ago. Funny how that happens isn’t it? She is one of the best things to ever happen to us. I don’t think we rescued her, but maybe in a way she rescued us?

If you look at the difference in Shelby's ears and eyes in the pictures, if you are a "dog person" you will really see her emotions. The bottom one is what we call her happy face, her Shelby smile. She was a happy camper hanging out at the local coffee house, ears all perked up. The top picture, her eyes and brows were furrowed and downcast, her body curled up into me, worried and waiting for everything to be over.

FYI

2009-04-05T21:07:00.002-07:00

I am updating a couple small things here and there on the site. I am not giving personal updates on my own situation, not on this blog anyway. Things are not going well and I will leave it at that.

The updates I am doing include a major project I began last year and have people around the country involved in as well. I am taking a chance providing an email on this site because of this project. That said, I am sending a message to the ONE person who completely and totally screwed up this blog for all of my readers, including the producers at the Discovery Health.

That one person knows who she is: you believe you are so full of knowledge yet are an incredible idiot, dispensing downright DANGEROUS information to newly diagnosed patients. I spent an ungodly amount of time picking up the pieces of what you did to other people. As I continued to worsen my health would no longer permit me to keep up with cleaning up after you. Add that to dealing with your incessant messages, comments, notes I asked you for THREE years to STOP writing. You obviously do not understand the meaning of STALKER. I will make it clear one last time. You know who you are. Do not even THINK of contacting me again under any circumstances. You know very well how easy it is for me to get authorities involved should you choose to make a stupid move and contact me in ANY way, shape, or form.

Moving on. Everybody else, please ignore all that. It is only ONE person who screwed things up. Please continue to take advantage of the links at the side of the page. The links are excellent; just because the blog is not being updated doesn't mean the links aren't. They are wonderful links, reliable and trustworthy. Use them! Also, feel free to contact me if you need a cap because of brain surgery, or need to locate a neurosurgeon because you are newly diagnosed.

Please allow me a couple days to get back in touch. With a couple dozen major seizures each and every day I don't get a whole lot done and need some time to get back to you. I have no sense of time whatsoever since I spend most of my days unaware of what the heck is going on anyway so please be patient with me.

that's it

2008-10-13T11:02:00.002-07:00

I won't be posting for awhile. Just a heads up b/c some of you have this blog on your list and so you can take it off and not waste any time looking for updates. There are things going on that take precedence and i'm worn out from having to deal with them so them and I've had enough. I'll be back at some point but no time soon. Thanks.

Shelby's class

2008-10-09T13:05:00.003-07:00

I had class today with Shelby. It wasn't easy, being 7 days out of surgery. Thank goodness for wheels! My head and arm are exhausted but thankfully Shelby was a great lil girl today. By the end of the hour she not only mastered today's commands but also the ones from last week that we missed. She is one sharp cookie!

Miss Shelby in her new vest:

2008-10-09T02:32:00.000-07:00

It's been 6 days since sx. Arm is slightly better, not a whole lot. I'm sure it'll get there with time.

It's always strange to be told by a world-famous surgeon if i hadn't had the surgery when id id, i'd have had my arm amputated in the next few months. Strange. What a mental pic--me in a chair with no arms to push with. Sigh.

This puts a sizable setback in getting things made for Christmas.

My incision and surrounding area are really swollen. I felt it earlier and something went squishing around. Am guessing that's my typical EDS body rushing to make sure surgical areas get nice and squishy and puffy and warm.

The kids are still on break, go back to school Monday, ending the 3 week break.

I have to go to class today with shelby, ready or not post-op. Her vest came in while we were away. It is beautiful. The girl did an amazing job with the craftsmanship and embroidery. Will get pic when I can.

Home again

2008-10-05T22:15:00.003-07:00

We're back from Maryland. Surgery went well. In a nutshell (well as brief as an Ehlers-Danlos nutshell can be anyway), the artery was 'severely' compromised, muscle was an abnormal size, way too many blood vessels, the nerves vertical not horizontal. A big chunk of muscle removed, sections of vessels cut out and cauterized, artery decompressed, etc.

So, I get to keep my arm, no below-shoulder amputation. Flow is restored both directions, wahoo, blood flow to the brain and the arm, both are a good thing! Dellon is an amazing man. In 6-12 months he is going to write my pain management/neuro man and guide him in some additional work that needs done to my head that are damaged from all the brain surgeries. I just need the 6-12 months first to get this to heal better.

This is more painful than December's surgery. Thankfully since the last surgery they bought a fiberoptics intubation system and made sure it was in my OR for me b/c of how hard I am to intubate. It also means I'm scraped up and raw, small price to pay.

It's hard to control my arm movement so I don't expect to be on here much in the near future. It's taken 2 hours to write this. I need to crash awhile.

auf Wiedersehen

2008-09-29T19:24:00.003-07:00

My flight leaves at 5:45 tomorrow morning so it's time I pack this up and get some sleep.

I will post again as soon as I can after surgery #15 is over.

I wanted to send big hugs and gratitude to those of you who so kindly donated to the National Brain Tumor Foundation after my previous post. I thank you, my children thank you, and I know all of us living with neurological disease will never forget your help. Thank you!

Lil Miss Working Dog

2008-09-25T17:33:00.004-07:00

Shelby did great today on paratransit, lying down on the wheelchair lift and holding on for dear life as it moved. On the return lift when the HandiDogs instructor supervised us getting on board, the driver told her they usually take assistance dogs on board first then the owner/chair user. The instructor laughed and told him he would "never get this dog away from her owner." LOL That's my Shelby girl! Class went much better than last week as well, I am happy to report.

I realized that my National Brain Tumor Foundation's Angel Adventure Day is one week after my return from next week's surgery in Baltimore. With everything going on between prepwork to put the house on the market, DH's surgery, my sudden surgery, my mom visiting, and Shelby's training, I haven't been able to put nearly as much into it as I was able to last year. I feel badly about it.

Pardon me asking but if you are able, would you be able to spare even $5? Neurological research is so critically important. It is a terribly underfunded area when it comes to grants and sponsorships, and brain disease is devastating. Even if someone recovers, so-called recovery is typically partial. We are left with permanent life-altering and often debilitating side effects. While we struggle throughout every single day, our families are left to cope and pick up the pieces. Nothing is ever the same.

That is why we need your help. If everyone found $5 to give, which is of course tax-deductible since it is a 501(c)(3), it would make an astounding difference.

While new discoveries funded by your help may be too late for some of us, it gives us hope and courage to get through the days simply to know our children may take advantage of wonderful scientific and medical advances.

There is a link on the right side of the page. If you follow, you will find the donation page--and my family's deep gratitude.

DH's minor outpatient surgery today for a sort-of hernia went fine. He's been going back and forth between watching television and snoozing. All is well.

We have our flights and hotel but not the rental car yet. A generous friend is trying to work it out for us to use her accrued points for the car; hopefully we will know tomorrow if it will work out. It is so kind of her!

There is so much to do I'm a bit flustered which I guess is why I'm sitting here instead of getting things done. Thursday is just a particularly exhausting day because of Shelby's class. I'll work on a couple little things tonight (I hope).

Surgery #15 scheduled

2008-09-23T20:50:00.003-07:00

Today I received the schedule for surgery 15. We leave Tuesday (yes next week) for Baltimore. Wednesday is pre-op appt/testing, Thursday the 2nd is surgery.

I'm scrambling finding care for the kids, the dogs, worrying about the flights/hotel/food/car $$. But it needs done.

The great Dr D

2008-09-18T18:50:00.003-07:00

The Baltimore surgery scheduler did not call today but I received an email from my surgeon, Dr Dellon! He said he has thought of me often and was so glad the surgery is being done because it really has to or I will lose my arm, not to mention the restricted blood flow to my brain.

I shared with friends earlier about how the service dog class went today. It was the first time she came along since last week was orientation. Shelby just lay on down the wheelchair lift on the paratransit van right next to my power chair, did the same thing during the whole van ride to class, so that could not have gone any better (and the same story upon our return).

Class was another story. There are 5 of us ladies in class and we were spread as far apart in the room as possible as this was our first time bringing our dogs so we didn't know how it would go between them. They were all quiet as mice.

Except Shelby, who never makes a peep at home, seriously. She must have barked I kid you not 50 times a minute the ENTIRE hour. She was TERRIFIED of the other dogs though we have 2 more at home! One of the two assistants ended up being assigned to stay with us the whole class period to try & distract Shelby from the other dogs. They put up folding barriers/gates, then covered them in sheets to block her vision.

I came home with high ICP, rattled nerves, and SVT. I crawled into bed for 2 hours but was interrupted by several phone calls; when I finally got to sleep I had a stressful dream about my MIL.

I don't know about next Thursday's class yet since that's the day my DH has surgery. My kids will be on their 3 week break as of tomorrow after school and my mom is flying in Saturday night. I'm hoping to have the kids stay with a neighbor & have my mom take DH for his (outpatient hernia) surgery as I desperately need to attend this class. I can't afford to miss one, as obviously she really needs to get used to seeing other animals though she's fine with people, to be a good service dog, and this session is only 10 weeks. I have full trust in the doc doing DH's surgery; the same docs took care of me July 4th last year when my appendix ruptured.

I need to dig through my yarn and see if there's any I can spare to raise the money for the flights to Baltimore for surgery. Thing is, the yarn is what I'm using to make Christmas presents this year. I have nothing but time, little money, and besides I'm picking the items by the person and my heart and soul goes into them. Too tired right now to go look though. Later.

Shelby is going around with a very sheepish expression right now, though she still looks cute in the collar slipcover bandana I sewed last night. I'm considering offering them for sale here on my blog. I have the material for it so wouldn't have to make an investment in anything.

Puppy dog tails

2008-09-18T01:34:00.007-07:00

First, a shout-out to R.A., my local nurse friend extraordinaire! I don't think I have the correct email for you any more. I had to shut down my 13 year old Yahoo email due to someone who wouldn't leave me alone, which is why no more comments are allowed to be left here (so I don't have to see her & her annoying comments ever again). I have written you twice and not received a response, including that we were on our way to your hospital with DD and hoped you were there so we could visit. I still haven't heard back from you so please, give me a shout.

It's been crazy! As I wrote to a good friend earlier today (whom I hope doesn't mind that I copy/paste the info here because it is SO detailed I'd go crazy trying to cover it all relying on my brain to remember), here's what's been going on:

Growing independence & my Shelby: I was going stir crazy this morning and we've desperately needed for bread for days. So, I power scootered down the street with Shelby & checked the mail and worked on service commands along the way. She never walked by the scooter before since I use my manual chair exclusively; I had my training orientation last week and used the scooter, thinking it will be easier to handle the leash, clicker, dog, and treat bag. So I figured I'd better practice with her & the scooter since she will start coming with me to the weekly class beginning tomorrow.

She did a great job going to the mail boxes, didn't mind the scooter whatsoever. I was so motivated I did another first--scootered the 1/2 mile to Walgreens & the supermarket for bread. I came home, leashed Shelby again, and we scootered the neighborhood circle. She wanted to run (she runs several miles a week with DH which is another reason for me to use the scooter--she'd take off with me if I used the manual ROFL).

I know it doesn't sound like a big deal but I am so excited I took this step, no pun intended. I have never gone out on my own since becoming so chair-dependent until last week's paratransit ride. The self-conscious feeling was gone. I enjoyed the fresh air and loved the independence. I think that necessity-imposed ride to class really did a lot for me. I'm realizing that yes I need a lot of help, but there's still a lot of things I can do for myself as long as I put the self-consciousness aside and just DO IT. I know it's a small thing in the grand scheme of things but for me it's an accomplishment.

Now I'm keeping my fingers crossed that Shelby will not freak out at the paratransit van chair lift tomorrow, that she will get along with the other dogs at class, and do well on the return ride home! Yes, I'm nervous LOL. I still wish I had a friend to come with me.

A miracle: I haven't shared this because though it's tremendous it's also embarrassing and I feel self-conscious. The church I attended for years until last year (when I was becoming homebound) held a church-wide fundraiser without telling us and a week ago showed up at my door with an envelope containing a check for 10K. I battled for another 10 minutes trying to refuse it, wouldn't take it in my hand, and she said it was a unanimous decision by the board of directors to do the fundraiser and that I did not HAVE to do the surgery with it, but if I decide against it it should be because I don't WANT it, not because I don't even have the choice. I said the money could be used to help others, I'm just one person. She said I don't have a choice but to take it and (she grinned while saying this) say thank you and just be gracious and accept the help!

So. That's where I'm at, struggling with whether it's time to let things run their course, or have Baltimore do this, pray for success to have more time with my children. Surgery # 15 is now a possibility.

Local cardiothoracic guy: I saw the local cardiothoracic surgeon again Monday. We waited (with children in tow) from 3:08 to 6:26 for Dr C, the director of the cardiothoracic department at the big hospital here. This is also the doctor who last year would not do my surgery because of the Ehlers-Danlos. I was hoping if he saw how well surgery went in Baltimore in December that he would reconsider doing the next surgery himself. He read Baltimore's testing and surgical notes and my plan rather backfired.

This time he more adamantly refused, saying it is much more involved than others with arterial TOS and he doesn't trust himself with it because of how bad my form of EDS is, the artery's importance and Baltimore really needs to be the one to handle it.

I hated hearing it, knew it was a naive hope to have, but thanked him for his honesty. I should have listened to what God seemed to tell us last year when he said he was afraid of an EDS surgical patient--that if he's honest enough to admit that, he doesn't need to be cutting me open!

Baltimore: I did finally leave a message with Baltimore this afternoon. They should respond within 48 hours. I asked them to let me know the approximate cost of pre-op testing, appointments, and such that will be in addition to the 10K. The check is still in the envelope, feeling so weird about it. We need to come up with the 2 plane tickets/hotel/car/food money and are overwhelmed by the details that are so stressful whenever I have to travel to MD and NY for my surgeries.

A secret blessing: This morning I opened the door to take the kids out to my neighbor's van who picks them up and takes them to school with their kids. Collin said, "Mommy there's mail in the door!" and sure enough tucked into our security door was an envelope from a church in Vail that I have never been to. Thinking it's an ad for their church, I go ahead and open it but I find no note, no ad...but $15 cash. I have NO idea who it is who blessed us in this way, but I give thanks to the person's generosity (and helping us get bread again today!).

Moving: We never would have been able to move into this area a bit over six years ago had the timing not been so awesome, with them being required to sell the last 2 lots that same day so they could close the subdivision and move to the new one that needed open to begin sales. We were living 5 hours away from here and they would not count my teaching income up there because of that, only Sterling's as a state employee. Ugh! Anyway we got into this area and are glad of course. So I moved in here with a 14 month old and was expecting Meg (after staying at my mom's a month because construction was behind). Now with 7 and 6 year olds and being into the full-swing of full-day school (BOTH of them finally YAY!) we decided to go for it. We can't eat together at the table because we can't fit back there (that tiny dining area by the sliding glass door in the kitchen), there are no places for desks for the rooms being too small so right now Collin uses a shelf on his shelving system though he has to sit much lower than the shelf, and Meg uses the nightstand we took out of our bedroom and put in her room for her CPAP.

Anyway my point is that because of the subdivision closing the day of our contract, they gave us our land for free, giving us a tremendous discount. The market has picked up a bit this year, although certainly nowhere near as good as 2 years ago, but definitely better than 6 months ago. Even though things are still a bit slow, we thought about it and it seems like a good time to go for it because with a poor market we will still make a little because of what we saved on the house. We will make a little bit to have a small down payment on another house. It certainly won't be a whole lot, but there's no way we will lose anything. This is likely the only chance of getting into a bigger house for this amount so it's a win-win situation kwim? We have been clearing out like crazy via Craigslist and eBay and the place is clutter-free and clean.

We'll get DH through his surgery on the 25th, my mom's visit from the 20th to the 27th, and then go ahead and get the house listed officially after that (we've already interviewed the real estate agent we want).

Fluff: Tonight I got the urge to "girlify" my Shelby. I mean, I've only had boy dogs since my girl Twinkie died when I was in Kindergarten! So I made a bandana of sorts. Instead of tying it around the neck and risk catching dog hairs, I sewed a slipcover for her collar to take away that pesky collar-itch, using a decorative stitch, then the bandana comes off that! With it being 2-ply instead of 1, and a pressing, it looks much more professional that single thickness. Her next one I am going to use contrasting fabric to stitch on her initial LOL. Hmmm. I wonder if there may be a market for non-itch collar cover bandanas out there? Yeah I know, I'm desperate, but I have to think of a way to get us to Baltimore. Anyway, here's Shelby sporting her new accessory:

Tiring but productive

2008-09-14T16:56:00.002-07:00

Good grief it's been a busy couple of days but today was especially.

My HandiDogs orientation went great. A friend that I had not seen in around 3 years dropped by unexpectedly for a visit and was there 20 minutes later when VanTran (door-to-door public transportation for people with disabilities). I was embarrassed enough as it was, going on my first paratransit ride, but to have her watching the whole time made me feel a little more pathetic. I did a good job driving the scooter over the rocks in the yard though to get to the curb since the driveway was blocked LOL. My driver was on his first day so had a trainer with him. That made things take a bit longer but I felt more comfortable with it since I could tell he tied my scooter in so tight that I wasn't going to budge the whole trip (a strap was around my waist as well to boot).

The class went quite well. There are five of us ladies in the class. Two of us use wheelchairs, two use canes, and the fifth woman is legally blind. It was a long two hours but the rest of the weekly classes for the next 10 weeks will only be one hour. A dog's attention span isn't real long haha so an hour is a lot of work for a dog to be in training.

Tomorrow we put our house on the market so I've been kicking butt around here cleaning up and clearing out as much as possible. I sold a lot of things on Craigslist, a few things on eBay, and thankfully it should help with moving expenses. It should be enough to cover the UHaul anyway which is great. I have a few things left I listed today from our massive garage cleaning. If they aren't gone by tomorrow evening, off to Goodwill they go.

Sterling finished mopping the floors and we're taking a breather before we go put pavers around my garden to spruce it up. Ok, let's admit it, I'll supervise as he does it. It's not like I can lift a paver but I can pretend to be useful!

Tomorrow Meg has her check-up after her infection-hospital stunt, the realtor comes over, and in the afternoon I go back to the head vascular man at UMC. Fingers crossed--I really need to get this right side taken care of.

GRRRR health care!

2008-09-09T11:09:00.002-07:00

You know this is going to be a rant if it's related to health care.

I mentioned somewhere recently (sorry can't remember where) that we're having a problem with the hospital where my daughter stayed overnight for her 2nd sleep study, the titration. Normally that's done in labs but due to her age (4 years old at the first sleep study, 5 at the second 9 months later due to change of insurance) the pulmonologist required it to be done in a hospital. She had her tonsils & adenoids out (and a 4-day stay in the PICU for a massive lung infection and inability to maintain oxygen saturation) and still had bad sleep apnea, turning blue in the lips and fingertips for the next 2 years in the study process, diagnosing the apnea and averaging 60% oxygen saturation.

Here's the timeline of events:

October 3, 2007: 2nd Sleep Study for CPAP titration at K*** Hospital

August 11, 2008: We receive a bill from K*** Hospital for the above study for $1,998.00. In the history category, there is NOTHING regarding insurance filings, payments, NOTHING.

August 11: I immediately call our insurance company TWICE, take names & reference numbers. They send K*** a certified letter saying they are billing us illegally and that by Arizona Revised Statute # whatnot, K*** did not file within the legal time limit and so no one was responsible for payment.

August 11: I then immediately call K*** and let them know the insurance names and reference numbers and the certified mailing number so they do not bill us again.

August 13: A whopping two days later, K*** sends us to collection. After ONE bill and a certified letter! We receive a collection notice from a debt company. We notify them of the certified information, all names and numbers. They do not care.

August 25: We walk-in to the K*** corporate offices and have an impromptu meeting with the representative and supervisor. We learn they never processed our daughter's change of insurance until 3 months AFTER the CPAP. Their fault of course but they can't admit to it. We see their computer notes; they refuse to push the print button for our copy without a subpoena. They agree to put a hold on the account with the collection company and do an investigation to find responsibility and say if they think it's their issue they will leave it at that. (Right.) They ask for up to a month and say we can call and check on the situation at any time.

August 26: I call and let them know the pediatric pulmonology office, who arranged, authorized, and scheduled the study to be done at K*** Hospital, had the updated insurance information the ENTIRE time. I politely and respectfully told them the information so they could include a discussion with the pulmonology office as part of their investigation. They agree it could be helpful and will call and talk to them.

September 9: I have not heard from anyone since above date and call to check in, make my presence known. C* is busy, can't take my call right now so I speak with L*. Computer notes show her that they finished the investigation and C* should have called me. The only call that was made according to the notes was to the hospital itself to see if they had the updated information from us when we checked into the hospital the night of the study. L* says C* may have notes she hasn't put in (like calling the pulmonologist). I have a gut feeling she never did.

September 9: Yep, I called the pulmonology office and thankfully the person who arranged the authorization and K*** appointment last October called me within minutes. Nobody from K*** has EVER called them. Our original insurance issued an extended authorization for the October sleep study good for payment two months past when the new insurance took over. She also verified they had the newer insurance information the entire time. She is irritated and says she will immediately notify their auditor what K*** is doing. She does so--as the auditor has her call me back for more details from off of the bill.

A friend from church came by with a certificate for Sterling and another item (more another time) and I retell the K*** tale; she asks if I know that so-and-so's father is the director of the hospital and to let him know what's going on because they know all about me from church.

Oh, this could get good.