Kansas

I moved. Everything came together the way it should, and we're settling into our new home nicely. We did a door to door move; we hired a Penske truck, spent two days loading it up, outprocessed housing in Illinois then hopped in and drove to Kansas.

There have been a couple of flies in the ointment, however. The house we're renting was occupied by the home owners until September. We are the first tenants; renting is a new experience for them and it showed. Within the first 24 hours we had to have a plumber out because the bathtub leaked, one toilet wouldn't flush and the other shower didn't get hot water; a HVAC guy because there was a heat pump thermostat on the wall when we don't have a heat pump and it caused the A/C unit to run constantly, and a refrigeration man because the fridge wasn't getting cold. The house was also dirty, so dirty that I felt I had to clean the shower before I could use it. The oven was the filthiest I have ever seen, and I had to replace the drip pans underneath the electric burners of the stove because the old ones were so dirty and rusty. I was more than a little disappointed that I had just got done cleaning one house to inspection standards and here I was, less than 12 hours later, cleaning another home.

The second, and more significant problem happened the week after we moved in. It started with a dimming of the sight in my right eye. Colors were muted and things just looked fuzzy. I waited a couple of days to see if it would go away, and when it didn't (and in fact got worse) I went to see my doctor. An hour later I was in an opthamologists chair, being diagnosed with central retinal vein occlusion. I won't regain any of the sight I've lost and there's a 50% chance I'll go blind in the affected eye. It's put my plans to go back to work on the back burner and I'm still trying to get used to not being able to see properly.

The boys are settling in nicely, and Hubs has started work. We're having one of the single soldiers he works with over for Thanksgiving dinner - he'll be the first guest in our new home.

I have to say that I like Kansas thus far. The town is small, but it has everything we need and the people are some of the friendliest I've ever met. The neighborhood we live in is wonderful; I can drive down the street without worrrying about unattended toddlers running out in front of me and when we go to bed at night we're not disturbed by other people's music pounding until 4am.

That alone made the move worthwhile!

Dear Doctor

Dear Doc B,

I'm writing this in the hope that you remember me. I think that you might; you considered me a thorn in your side for a while.

I want you to know that I don't hold anything against you personally. You're probably a very nice person to interact with outside of the doctor/patient relationship. My issue is with your professionalism. Not your skill as a physician, exactly, but your listening skills.

I have a lot of respect for the education you've received. My hat's off to anyone who can make it through medical school and residency. Nursing school opened my eyes to the kind of rigors physicians are put through; those of you who make the grade do so because you're tough. My issue isn't with your level of intelligence, however; it's with your listening skills. Your HEARING skills, to be more precise.

Doc, you may have thought that you listened to me, but I don't think you HEARD me. You didn't take me seriously. You wrote me off, you told me that you didn't know why I was so ill intermittently but that I should just learn to live with it. You labelled me - not only in your own mind, but to other providers, too - as a hystrionic hypochondriac and also as a drug seeker. It didn't seem to matter to you that I wasn't asking for narcotics and that I made myself ill taking NSAIDs, you ignored the fact that I came to you asking for a medically managed withdrawl from narcotics after a car accident and subsequent surgery, you just saw me coming in complaining of pain and you made up your mind that that's what I was after. You even wrote it in my medical records. You ignored the times when I refused narcotic medications from yourself and from other providers, you ignored that I asked for you every single time I was seen because I wanted continuity of care....you ignored those things and you got a tunnel vision. Do you know how difficult it is to have something like that written in your chart, Doc? Every physician I've seen since you wrote that has initially looked at me with suspicion.

You're probably wondering why I'm writing to you now, years after we last met. I'll tell you why: I have Crohn's disease. I've HAD Crohn's disease for years, even way back when I was your patient. It's not only attacked my gut, it's attacked my joints and my kidneys, too. All that joint pain I kept complaining about? It was real. The belly pain and constant diarrhea I came to you with? That was real. The fatigue, the hair loss and weight loss and the depression that came and went? The recurring kidney stones and reflux, the gall stones and billiary colic? ALL OF IT WAS REAL AND HAD AN ORGANIC CAUSE.

It wasn't all in my head. It wasn't something I was making up. It was real, doc, and had you not been so determined to prove that there was nothing wrong with me, you might have seen the signs and symptoms that, according to my gastroenterologist, were 'blaringly obvious to anyone who cared to look' and you might have ordered the right tests and come up with a diagnosis.

I consider myself incredibly lucky to have found a physician who was able to put aside the bias you placed in my chart (based on a falsehood, I might add) and see me as a sick person desperate for help. Instead of taking the preliminary negative results of a colonoscopy and endoscopy as a firm indictation that nothing was wrong, he decided to investigate further. "There's another 1/3 of your gut that I haven't seen yet" he said. "Don't worry, we'll figure this out" he said. Those words were like a ray of light in the darkness, and they made me cry. It felt like finally, someone was validating the way I was feeling.

He took me at my word, Doc. He went and looked further, and he saw that the 1/3 of my gut he hadn't seen yet was eroded and ulcerated. He looked at the abnormal blood tests, at my lack of renal function, at my swollen and painful joints, at my weight loss, at my malnutrition. He took the time to figure it out instead of dismissing me the way you did. He took the time, and he got an answer.


I'm not saying that he is a better physician than you, or even a better person than you. I'm simply saying that you might want to re-think your bias; that you may want to try to put aside your cynicism a little more often when confronted with a patient who keeps coming back with the same symptoms, telling you that something is wrong. Perhaps if you had done that with me, I'd have better renal function than I do now and I wouldn't have been as ill as I was...I wouldn't have thought I was dying. I can't say with any certainty that your lack of concern led to my kidneys only working at roughly 30% of their original capacity, but I can say that they're damaged because of the effects of undiagnosed Crohn's disease that I had for YEARS. I can say that had you NOT insisted on seeing me as the pain in the ass patient you might have been able to help me.

I know how easy it is to become cynical when confronted with patients; I've experienced it first-hand. I've also had the cynicism come back to bite me in the ass. I hope that this letter and my diagnosis is YOUR bite in the ass, Doc. I hope that you don't just blow this off as sour grapes on my part; I hope that you take it seriously and that you use it as an opportunity to reassess the way you look at patients. I don't want anyone else to go through what I went through, and I don't want you to treat anyone else the way you treated me.

Now that I have a diagnosis and am being treated adequately for this disease, I'm doing really quite well. It wasn't until I started to feel better that I realized just how awful I had been feeling for so long. I know that it may not seem like it, but I harbor no animosity towards you. If you were still practicing in my area I wouldn't be telling other patients that you're a horrible physician, and I won't be campaigning for the AMA to revoke your license or penalize you. I simply want my case, my illness, to be a wake up call for you. I want you to learn from it, to learn from me.

Much love and many regards,

NM

Contrast

Thursday, 5pm. There's a knock at the door; Hubs answers it and standing on the other side of the screen door is D, the little boy who lives in the other half of the duplex we inhabit.

Hubs: Hey, D! What's up, Buddy?

D: Mister F, I'm real sorry but my brother threw his ball in your yard. Can I please have it back?

Hubs: Of course you can. The dogs are inside, so just go on in and grab it. And D? Thank you for asking.


- - - - - - - - - -

Saturday, 5pm

Our house sits almost at the end of a cul-de-sac. There's about 15' of grass between the duplex we share with the neighbors and the house preceeding ours - where the family that likes to party a lot lives. I don't know how many children live there exactly, but today there are 7 of them outside. To the front are my flower beds, our driveway and a patch of grass that we call out 'front yard'. It's not fenced in, but it's our responsibility to maintain. I worked hard on my flower beds this summer; I have roses, azeleas, rhododendrons and a lilac bush, pansies, alyssum, violas and snapdragons. The centerpiece is a Queen Elizabeth rose I planted in memory of my dad, a lush, spicy smelling rose with red petals and dark green leathery foliage. To the back of our houses are baseball diamonds and soccer pitches, big wide open spaces of grass for kids to run and play on.

But they don't play there. At least, the ones that live next door to me don't. They choose instead to play on the strip of grass that separates the houses and they choose to play in my front yard. They're playing soccer there this afternoon, and I tried not to mind the ball hitting the side of the house; I tried not to mind them traipsing all over my lawn. I tried to ignore the ball landing in my flower beds three, four and five times, and I tried even harder to not mind them walking over my bedding plants to fetch it - without even asking or letting me know that's what they were going to do.

When they hit my dad's rose, though...that's when I couldn't ignore it any more. I opened the screen door and told them they needed to take their game elsewhere now. They all stood still, all seven of them, stared at me with open mouths. They didn't say anything - not a single word. I know better than to expect an apology, so I closed the door and came back inside.


I give it half an hour before they're back out there with their ball in my flower beds again. I also expect there to be some retribution from their parents; there will likely be snide comments made in my direction or loud music played until the wee hours of tomorrow morning.

It's quite a contrast.

Taking it back from whom, and to when?

The Tea Party wants 'America back'. The problem that I have with that statement is that it wasn't ever theirs - white, conservative Christians - to begin with. Unless I have my history all screwed up, Native America peoples were here long before us caucasian Europeans came and took their land from them (which much force and great celebration, I might add). How can you 'take back' something that never really belonged to you in the first place?

Exactly what do they want back, anyway? What era is so attractive to them that they feel we need to turn back the clock? How many years? 4 years - back to when we had a President who wasn't a Democrat and a person of color and we were sending our young men and women to Iraq to die for a cause that was tantamount to a lie? How about 20 years, to the grand old era of Reganomics when cocaine from Latin America was king? Do they want to go back the era of McCarthy-ism, when the threat of Communism caused such paranoia in the country that we actually had an 'Un-American Activities' committee? How about the 30's, before the New Deal, where everyone had to fend for themselves their entire lives and if you were too old/ill to work, you starved or died? What time do they want to go back to, and what exactly are they trying to regain?

The Tea Party also wants you to believe that illegal immigrants are the source of all the problems in America today. Those dang Mexicans are sneaking across our border in the middle of the night, taking jobs away from hardworking Americans, getting free healthcare, dropping 'anchor babies' willy nilly and generally using up all kinds of resources whilst contributing very little to the community. Tea Party members seem to forget that unless they're Native American, they're descended from immigrants, too.


Then again, perhaps they don't. Perhaps they don't forget that; perhaps it's not so much about immigration as it is skin color, language and different culture. It's easier to use someone who looks very different from yourself as a scapegoat (which is why organizations such as the Arayan Brotherhood and KKK have lasted so long) than it is to turn against someone who's caucasian, just like you.

I'm an immigrant. I'm a Permanent Resident Alien in this grand melting pot of States. I've dropped three anchor babies here. I've worked here, gained an education here, used resources here....I have done all of the things that the Tea Party members are complaining about. However, I have blonde hair and blue eyes and fair skin and I speak English with an American accent. I'm not so obvious; I don't stand out in a crowd.

I can't say for sure that this is about race or skin color or religion or culture because I'm not a member of the Tea Party and I don't know what's going on inside their heads. From an outsider's perspective, though, it sure seems like it.

The final step to adulthood.

Hubs and I are considering taking the final step to adulthood (at the grand old ages of 41 and 38) and buying a home.

Leavenworth is likely our last duty station. We had plans to retire to South Dakota, but I think that Hubs skill set might be more suited to life in the Leavenworth area (he's been a Raven, a patrol cop, a detective and Non-Commissioned Officer In Charge of 2 military jail facilities, and by the time he retires from the AF he'll have a graduate degree in criminal justice). Leavenworth has 3 prisons in the locality...enough said, I think.

We also qualify for a VA mortgage loan. I looked at the interest rates and payment calculators yesterday and even at the highest interest rate (if we do this, we're going with a fixed rate. None of this fluctuating crap) over 20 years (instead of 30) we'd be paying LESS per month than we could for a rented property.

With that in mind....anyone got any advice for us? We've never bought a home before.

Thanks!

On the move.

We have PCS (Permanent Change of Station) orders. We're going to Ft Leavenworth, Kansas. My husband will be the AF liason at the military prison, and we will be the minority Air Force family on an Army post.

We're also tired of living on base, so we're looking at either renting or possibly buying a home off-post once we get there. Lansing and Leavenworth are smaller cities with lower crime rates than our current location - they seem like decent places for us to finish raising our kids and this will probably be our last duty location before Hubs retires.

Speaking of kids, our eldest will not be coming with us. She'll be 18 before we leave and is in her last year of high school and is incredibly reluctant to leave. So, we're making arrangements for her to live with her friend and the friend's mom. It hurts that she's not going to be with us, but I was going to lose her to college next year anyway (that's what I'm telling myself, at least).

I had to withdraw from college; we're moving on Nov 1st which would have precluded my finishing the semester. I see no point in starting something I can't finish, so I withdrew, got a refund, and will try to enroll in classes at a college close to our new duty station.

Holy cow....there's a lot to do!

116

It's hot.

How hot, you ask?

Try 116. ONE HUNDRED AND SIXTEEN DEGREES FARENHEIT.

I have never been exposed to heat of this magnitude before. Ever.

I don't like it. I'd rather be cold. At least when it's cold, you can put more clothing on. When it's hot like this....well, there's only so much you can take off, ya dig?

It wouldn't be so bad were it not so damn humid. The air is incredibly heavy and just fat with moisture; it's like walking into a warm wet blanket every time you step outside.

Oh, how I long for the Great Plains of South Dakota. At least the air is dry there.

I am becoming my father.

(incidentally, my dad died 4 years ago tomorrow).

One of the things I remember most about my father was his activism. If he saw something he thought was wrong or unjust, he let people know and more often than not, took action himself. He even threatened a 'sit-in' protest at a local hospital once - he'd been admitted for triple bypass surgery (a repeat) and the surgery kept getting cancelled as he got sicker and sicker. The doctors said that they didn't know when they were going to be able to do the operation, and that they were going to discharge him to home because they needed the bed for someone else.

Dad was having none of that. He told them that if they wanted him to leave, they'd best get the poilice in to move him because he wasn't going anywhere until he'd had the surgery. Then he called the local newspapers, TV stations, radio stations and even a national TV station to tell them about his plight. The resulting publicity (front page news in some publications) must have shamed the local health trust into taking action, because he had the operation 3 days later.

Whilst I haven't gone so far as to stage a sit-in protest, I have inherited my father's activist trait. I can't stand by and simply watch as events happen, and I also can't sit back and let someone else take care of it. My husband tells me all the time that some of the crusades I go on are none of my business and that I should leave them alone. My response to that is that I'm making it my business and that I'm taking care of something nobody else wants to get involved with.

A good example of this activism happened earlier this week. I was at the BX with Hubs, perusing the magazine rack, when I found a publication that was dedicated to the cultivation and use of marajuana.

It was all about pot. How to grow it, where to grow it, what kind of fertilizer, how to use it, where the good stuff comes from...it was pot, pot and more pot.

A magazine all about pot for sale in a store on a military installation.

For those of you not familiar with the Uniform Code of Military Justice, it is an offence for ANY service member to grow, possess and use marajuana (or other illegal substaces). The penalties can range from dishonorable discharge to jail time, loss of rank and forfeiture of all pay and allowances. It's illegal in the civilian world, but the military holds it's personnel to a higher standard when it comes to dope, so to see such a magazine for sale in a military store? Inappropriate. Incredibly inappropriate.

I showed it to Hubs. He said that it might be inappropriate, but that they also sell porn magazines and those aren't exactly appropriate either. "Yeah, but porn's legal. This isn't" was my reply. He said for me to leave it alone, that it wasn't my business.

I couldn't. Considering what we've been through with our son, I simply could not walk away and do nothing.

So, I emailed the base commander, asking him if he was aware of this publication being sold in HIS BX and telling him I thought it was highly inappropriate.

I sent the email at 5pm yesterday. At 10am this morning, I got a call from the manager of the BX, telling me that she had pulled the magazines from the shelf and that she would make certain that they would not be making a repeat appearance. She agreed that they were not suitable for the facility and that had she seen them when they first came in she would never have let them out on the sales floor.

I have to say I feel very satisfied with this result. I saw a problem, I took action, and I got it solved.

Thanks, dad. You raised me well.

Now I know.

I saw the GI doctor again last week. I had spent the prior Sunday in the ER with awful belly pain, vomiting, diarrhea and nausea. Whilst going gluten-free had helped, I was clearly still having problems.

She reviewed my test results (biopsy results and blood tests from the ER) and, after examining me, concluded that I'm gluten intolerant, and that I have Crohn's disease.

It all makes sense. The renal damage, the dramatic weight loss (I'm 120lbs now)the aching joints that come and go, the fissure in my natal crease that sporadically opens up, the "ulcer" that never responded to treatment but seemed to wax and wane ....everything that I've been dealing with for years all comes together in a single diagnosis.

I had wondered if I had Crohn's a while ago. I'd been trying to NOT make all my symptoms fit; I didn't want to be the kind of patient that reads about symptoms on the internet and erroneously diagnoses themselves. I had a feeling that it was more than Celiac disease, though.

So, I have a diagnosis at last. The good news is that it can be controlled. There are lots of medications available to put Crohn's into remission; I started taking one last night and have to go back in 2 weeks to report on how it's working for me. I'm learning about signs that a flare is coming on, and I'm also learning to mitigate my stress levels (stress doesn't help Crohn's disease and can sometimes lead to a flare).

The not-so good news is that I doubt I'll be able to go back into medicine (emergent or otherwise) again. It's quite a blow, to be honest; I'd always envisioned myself in EMS or nursing for the rest of my working life and now that doesn't look like it will happen. I'm having to reassess and think about where I want to go and what I want to do. I've enrolled in part-time classes this fall and am continuing my degree with an emphasis on sign language interpretership. I took a semester and a half of it some years ago and really enjoyed it (did well, too), so I'm looking to build on that. I can still use my medical knowledge (hospitals use ASL interpreters for their translator banks), but the stress levels will be much lower.

I'm just grateful and relieved that we've finally figured out what's wrong with me. I was starting to get worried that we'd never know - and I'd also started to doubt the validity of my symptoms. My husband and kids said that they were wondering whether I was really feeling as ill as I said that I was; if I wasn't embellishing a little to get attention. Now we have this definite diagnosis, I can leave the limbo I've been living in behind me and get on with life again.

Life is going to be good!

You know what really drives me crazy?

People who have graduated High School/college but who seem to not know how to spell basic words or use tenses.

The ability to read and to write is essential. If you can't read, you're literally lost - you can't do something as simple as read the instructions on a box of cake mix, and if you can't write, filling out a job application is impossible. Why the hell more emphasis isn't placed on literacy and basic writing skills is beyond me.

Here are some examples I found in a 15 minute span this morning:

'You will be miss bro'

'Wen to da stoe to look at cloes'

'I was driven when someone past me doing there hair'

'What was I suppose to do? I didn no it was wrong'

'wat you wanna kno they hole life stroy?'

'people just wanna have sumthink to talq abut'


Not all of those quotes are from teenagers and younger people, either. Some of them are from folks in their 50's.

We're becoming a nation of idiots.

That's sad.

Concealed Carry Permits and the lack thereof

When I first got a gun, I lived in a state that had a CCP law. It wasn't a 'shall issue', it was a 'may issue' law; you had to undergo a background check in order to be considered and if that came back clean then you were issued the permit. Ths particular state had reciprocity with many other states, meaning that I COULD carry in more states than I could NOT.

Then we moved to Illinois, and the frustration began.

IL does not permit concealed carry, period. In fact, you have to be granted a Firearm Owners ID (FOID) card in order to even touch a firearm in a store or purchase ammunition. The FOID card application and background check was just as comprehensive as the one for my CCP - in fact, it took longer to get the FOID card.

Basically, you can't carry a gun in Illinois. Chicago and it's draconian gun laws have tainted the rest of the state. I think that needs to change.

I live close to a high crime area; the local newspapers and TV stations are constantly carrying reports of people being shot and killed on the streets....and nearly all (I won't say 'all' because I don't want to talk in absolutes) of those homicides was committed by a person who was in legal posession of the murder weapon; they're all done with unregistered 'street' guns. When was the last time you heard of FOID card owner being involved in a drive-by? How about holding up a gas station? Mugging someone? Home invasion, perhaps?

Earlier this year, just across the river in MO, there WAS a report of a man who was shot and killed by a person with a legally owned, concealed firearm. The man was robbing his victim at gunpoint the time - he pointed an illegally acquired, unregistered 9mm at him and told him to hand over his wallet and phone. The victim was carrying a .38 special in a small of the back holster, and after he'd passed over his wallet he reached back as if to get his cell phone, pulled his gun and shot his assailant in the chest. It was a justified homicide; he killed his attacker in self defense.

I spent half my life in England, where guns are outlawed. The old adage of 'when guns are oulawed, only outlaws will have guns' is true, and outlawing those guns has done NOTHING to decrease the crime rate. People simply stab each other with knives now - and there was even a law in the pipeline banning knives with blades over a certain length. What's next, banning people from using their bare hands?

I understand that when the Second Amendment was written it's intent was to allow the citizens of the US to protect themselves from foreign enemies and invaders, NOT necessarily from each other..... but times they have a'changed, folks. Every law abiding citizen in the US, regardless of what state they live in, should be able to own and, if they so choose, carry a gun on their person to protect themselves from the thugs and criminals that seem to be breeding so prolifically.

Times have changed, society has changed, cultures have changed. . . and laws, more specifically IL state laws, should change, too.

It's time.

Lesson learned

Any doubts I may have had about this NOT being Celiac disease have been removed. I made a huge mistake yesterday and I'm paying for it.

We were supposed to go to a friend's house for a cookout yesterday afternoon. Yesterday morning, I made some macaroni salad with gluten-free pasta to take with us (I wasn't going to tell anyone it was gluten-free to see if they would be able to taste a difference) and I decided to have a cup of it as part of my lunch.

I didn't read the ingredients on the jar or mayonnaise; I just assumed that it would be gluten-free. That was a BIG mistake.

Half an hour after I ate it, my belly started aching. All I could do was curl up in a ball on the couch - it was so bad I had to take prescribed pain medications and Hubs made what he called a 'command decision' and called our friends to let them know we wouldn't be attending the get-together. He asked me numerous times if I needed to go to the ER (something he doesn't usually do).

It wasn't just the belly ache, I felt lousy in general . . . just like I had been feeling before I got diagnosed. I had my kid read the ingredients off the mayonnaise and pickle relish jars:

Her: " Eggs, oil, vinegar....."

Me: " Does it say 'distilled vinegar?"

Her: "Nope, it just says vinegar"

Me: "Oh no....."

Today I have spent more time on the loo than I have off of it. My belly still hurts, I'm mildly itchy, my fingers, knees and hips ache and whilst I don't feel as bad as yesterday, I don't feel great either.

Lesson learned: when in doubt, don't eat it - and don't assume that something is safe. From now on, if it's got a label on it, I'm going to be reading it. If it's something somebody else made, I'm going to be asking questions. If there's any doubt whatsoever about whether it's safe or not, I'll just go without.

My doctor wants me to do a capsule biopsy test so he can visualize the rest of my small bowel (he wants to make sure I don't have a colitis as well as celiac and to nail down the celiac diagnosis. The biopsy results were 'highly suggestive' of celiac disease, but I was sero-negative)), but in order to do that and get accurate results I'd have to eat a full (meaning gluten included) diet for at least 2 weeks prior to the test. After yesterday's experience, I'm incredibly reluctant to do it. To me, it's pretty clear: I went gluten-free and saw a cessation of some symptoms, a minimization of others and a steady overall improvement. I ate food containing gluten (albeit inadvertently) and the symptoms came back. I don't want to go back to feeling like crap all day every day again.

Will the benefit of having the capsule scope outweigh the drawback of feeling ill and downright miserable again? If he suspects a colitis, can't we just start treating it? I really don't know what to do.

Anyone have some advice?

New name

I've changed the name of my blog, as you can see.

It was time to change. Noodle Dawg is long gone, and I'm no longer working as a medic. My adventuring days are over. It's taken me a long time to come to terms with all of this and I still struggle with some aspects of it.

So, welcome to Awkwardness a la carte. Come join me as I stumble through this life.

I've been gluten free for 5 days now.

My belly is calming down - I actually went out shopping with Hubs yesterday and didn't have to rush off to the bathroom once - my joints are less swollen and painful, I don't itch as much and I have more energy.

I've found some healthfood stores that have good gluten-free foods and have purchased a breadmaker. . . it's going to take some getting used to, but I can do it.

The one thing that I seem to keep coming back to is eating out - not as restaurants, but at other people's homes; at parties and get togethers and such. I don't want to be rude and NOT eat, I don't want to cause a scene by going on about how I can't eat any of what they've prepared and I don't want anyone to go to special measures to make me stuff that's gluten-free. I told Hubs that I thought bringing my own food would be the best thing, but that didn't exactly go over well with him. However, it's not his body; he's not the one reacting badly to wheat products - so I think that I'm just going to do what I think is right.

My mother doesn't seem to get it. She thinks that as long as I don't eat bread, I'll be fine (and she describes Celiac disease as "having your tummy upset by wheat", bless her). I've tried to tell her that things like pie and cake and pastries and pasta and seasoning mixes and batters and canned soups and breakfast cereals are all off the 'can eat' list now, but I don't think she's understanding that wheat is literally everywhere. It's a good thing I don't live with her, I'd probably hurt her feelings by not being able to eat 90% of what she cooks.

I will say that my food choices are much, much healthier now that I'm having to scrutinize what I ingest. In the past when I wanted a snack I may have grabbed a cookie or a Danish. Now, I have a piece of fruit or a yogurt. Instead of just shoving anything in my mouth without really looking at what I'm eating, I'm choosing more nutritious foods and I'm very aware of what it is that I'm feeding myself.

I know I sound negative about this gluten-free diet, but I'm really not. I'm kind of enjoying experiencing new flavors and textures and foods . . . I'm just frustrated with some of the people around me. I know there are support groups for people with celiac disease, but is there much information for relatives/friends?

Diagnosis

I have the results of the tissue biopsies taken during a colon/endoscopy 2 weeks ago.

They are "highly suggestive of celiac disease".

So, there we are. Celiac disease.

No gluten for me.

This is going to mean a huge lifestyle change and I am, to be honest, a little intimidated.

*sigh*

My mother goes home today. There was a slight panic in our house this morning when American Airlines decided that my mother's departing flight did not exist.

Me: Are you sure that's the right flight number?

Mum: (Showing me her itinerary that my brother printed for her when he booked the seats in DECEMBER) That's what it says on the ticket...

Me: There's no such flight number.

Mum: (shrugging) That's what it says on the ticket...

(at this point I'm feeling like I'm in a scene from the Grapes of Wrath, where the Joad family have a 'han'bill' promising them work in California and treat it as though it's a piece of ultimate truth)

Me: It doesn't matter WHAT your itenerary says, there's no such flight!

Mum: *shrugging and waving her hands* That's what it says on the ticket.

*sigh*

I called AA to ask what the deal was.

AA Agent: There's no such flight number.

Me: I know. I checked online and asked her, but she's insisting that what it says on her ticket. So, what flight IS she on?

Agent: The one leaving an hour later. Don't worry, she's got a reserved seat.


I got off the phone and wrote down the details for mother (why she wanted me to write them down I don't know; I'm taking her to the airport and getting her checked in).

Mum: Aren't they supposed to tell people when flights change like that?

Me: Yeah, and I don't know why they didn't.


Half an hour later, totally out of the blue:

Mum: I wonder if the new tickets your brother gave me before I left have the new flight number on them...

Me: Wait, what? What 'new tickets'!?

Mum: About a week before I left he rang to say there was a change. I was in town so he shoved the papers through the letterbox...I didn't really look at them, I just put them in with the other tickets.

She hands me a package of papers and sure as shit, the 'new' flight number is right on the front.

Mum: Oh. I thought that he meant it was the flight I came in on that was changed by 5 minutes. I didn't look at it, I just stuffed it in with all the other papers he give (sic) me.

Me: *sigh*

A tale of two women.

I have two friends (I actually have more than two, but this story only involves two of them).

They're both roughly the same age. They're both married. They both have children. 'A' has one child. 'B' has two. B has a college degree, A does not. A relies on some public assistance to help her and her family make it through each month - not a whole lot, but some.

They both work for the same company, and have the same medical insurance through that company. The similarities, however, end there.

A decided that she wanted more children. When she had difficult conceiving, she had IVF - a procedure covered by her insurance. It worked, and she got pregnant with triplets. TRIPLETS.

A's babies were born at 25 weeks, which meant that they required lots and lots of supportive care in the NICU. One died after 10 days. The other two are still there. A got the hospital bill for the one who died and realized that, despite her insurance company covering 80% of the cost, she was going to have to file for medical bankruptcy because she can't pay it - and that's just for 10 days of care for ONE child. She hasn't seen bills for the two that are still in the NICU yet, but if she can't pay her portion for one there's no way she's going to be able to pay for the other two.

That's A's story. Now let's talk about B...

When B was 15, her mother died from breast cancer. She also lost a maternal aunt to the disease. Current research suggests that that increases 'B''s breast cancer risk by upwards of 60%. 'B' worries about developing the disease that killed her mother and aunt and wants to be tested (BRCA test) to see if she carries the mutated gene that causes the cancer. 'B' has decided that if she DOES in fact test positive, she's going to have a bilateral mastectomy so she can, as she puts it 'get on with my life without that shadow hanging over me all the time'.

Sounds like a good plan, right? The insurance company doesn't think so. They won't cover the cost of the BRCA test - $3500 - and 'B' can't afford to pay for it herself.

This insurance company will fork out literally millions on IVF treatments and neo-natal intensive care for premature babies for a couple who already have a child, but it won't cover a $3,500 genetic test for a woman whos family history puts her in a high-risk category for developing a potentially fatal disease.

What the fuck, America? Is it just me, or does this seem unfair and fiscally irresponsible?

Halp!

I'm feeling like I've descended into one of the circles of hell.

I'm ill. My kidneys are damaged; I have stage 3 chronic/boderline stage 4 chronic kidney disease. I also have ascites, constant lower abdominal pain and nausea, am throwing up 3 or more times a day and sometimes feel like I'm going to pass out because it hurts so bad. I've lost more weight, I feel like death some days and people are starting to remark that I look ill.

None of those are good things. I've seen a nephrologist, who thinks that there's something more than simple kidney disease going on - so on Wednesday I see a GI doc.

If I had to put my money on a diagnosis, I'd be going with IBD (inflammatory bowel disease). Chron's, colitis....something in that family. It would explain the renal damage, the arthritis in my small joints that's suddenly flared up, the constant running for the bathroom (straight pipe), the pain, the weight loss the crippling fatigue...it would explain all of it.

I've gone through cycles like this before: I'll have weeks where I feel off color and my belly acts up, then just when I think it's time to go to the doc it starts to get better on it's own. However, this is the worst it's been. I can't ever recall feeling this ill for this long.

I've had to take a leave of absence from work. I can't even walk around the grocery store without needing to come home and lie down, so there's no way I can manage to provide care for 6 very dependent dying patients. I don't know if or when I'm going to go back, and that makes me really sad.

On top of all of that, my mum is here for a 3 week vacation. When she was last here in 2008, we said that 3 weeks was just too long a duration for her to stay, but time blunted our memories and emotions and when she asked if she could come visit for the same duration we agreed.

Never again. Never. She's a very sweet lady in her own right, but we are very different people, have very different lifestyles. She cripplingly polite, and seems to be incapable of making a decision about ANYthing.

I should interject here and tell you that when I don't feel well, I want to be left alone. I get short tempered and sharp tongued, and the best place for me to be is alone, away from everyone.

I can't do that right now. I can't be alone. I have acquired a shadow. A shadow that has no concept of personal space (which makes me really uncomfortable) with some habits that normally wouldn't bother me, but right now get on my last nerve. The only alone time I get is when I'm on the toilet or in the shower, and my patience is wearing thin.

The other day I got the urge to paint. It doesn't happen often, but when I get it I find that I need to run with it. Ignoring it ends up leaving me frustrated and annoyed.

Painting, for me, is a solitary exercise. Bob Ross I am not; I can't paint in front of other people and I can't paint and talk. I usually put my headphones in, some good tunes on and go off in a little bubble of creativity, and that's exactly what I did the other day.

Mum came and stood 3" from my elbow and watched me. *Pop*...creativity bubble burst. I figured it was a fluke and tried to blow it off. I put my stuff away.

This morning, I wanted to throw another layer of underpaint down, so I repeated the routine: headphones in, music on, paints and brushes in hand.

The same thing happened, except this time she tried to talk to me. *Poof*... again, the bubble burst, but this time I can't blow it off. It's eating at me....the whole thing is eating at me. Not feeling well, not having any alone time, not being able to paint....it's really getting to me and I'm finding myself constantly on the verge of tears.

I feel so fucking selfish for needing be be alone, for wanting to paint, for getting frustrated and annoyed. I've found myself counting down the days until she goes home, and I hate myself for that.

Halp. Really. Help.

Dio's Dead

Ronnie James Dio has died of stomach cancer. Upon announcing this news to my husband and sons, the following conversation took place:

Son #1: What? What did he die of?!

Hubs: Being short...

Son #1: Har. Seriously, what did he die of?

Husband: I told you, being short.

Me: No, he died from having long hair. 'Twas a lethal combination...

Husband: Actually, his hair was normal length, it just looked real long 'cause he was so short....

*sigh*...it's going to be one of those nights a la NinjaMedic maison.

To blog, or not to blog....

I've found myself with quite a dilemma.

Working where I do, doing what I do has given me lots of blog ideas. I have stories that are funny, some that are touching and others that are downright sad, and I am just bursting to tell y'all about them.

However, I don't think that I can. It's not just about HIPAA and patient confidentiality, because I could sanitize the stories and bleach out personal details. It's about intimacy and trust.

Death is a very intimate event. I've learned that being in the room or at a person's bedside when they die is to be regarded as an honor. The family is trusting enough of me to let me be there, to WANT me to be there . . . and I cannot violate that trust by posting the details of their very private moment on the internet for the whole world to read.

So, there won't be any stories of death here. There will be eulogies; tributes to the people I've cared for in the last days of their life, but I fully intend to leave the most private moments just as they are - private.

Not your fault, right?

It's been really nice here the past couple of days; sunny, with temperatures in the 80's.

It's also spring break. Consequently, there have been lots of kids outside playing.

Most of them are great; they're old enough to know that the street is primarily for cars and vehicles and that if a car is coming they need to get out of the way and onto the sidewalk. There are some kids, however, that are new to the street and who are far too young to be outside with inadequate supervision.

Yesterday I saw a car slam on it's brakes and honk at one of them when they ran out in front of the driver. Today, when I came home from the grocery store, there were half a dozen kids, all under the age of 4 or 5, in the street in front of my driveway and in the driveway itself. I came to a complete stop in front of them, thinking that they'd see me and get out of the street, but they didn't. They just carried on playing. In the end my son had to tell them to get out of the road and out of the driveway.

Nothing frightens me more than a small child who has no concept of how dangerous it is to play in traffic left alone on the street. They're unpredictable, and should one of them get hit by a car, you can bet your arse that it would be the driver's fault. It would be the driver's fault, the gub'mints fault for not putting up enough signs, the construction workers fault for using concrete and asphalt on the street...it would be anyone's fault but the parents.

Hubs and I have been looking at houses in the area. With every summer that passes, living off base and away from a neighborhood looks more and more appealing.

Ch-Ch-Ch-Ch-Changes

A lot has happened recently.

I had a virus that wouldn't go away and was sick for nearly a month. Last week was the worst; I missed almost a week of lectures and labs because I felt so awful that all I could do was lie in bed and feel sorry for myself.

I also got a job. With a company that I really, really like, doing something that I really, really love – and something I'm good at. It's where I want to be career-wise and the opportunities for progression are literally unlimited. I love the people I work for, the people I work with, and my patients and their families….so far, it's been awesome and I consider myself incredibly fortunate to have been given this opportunity.

I'm working full-time – 40 hours a week – and my schedule is such that I'm not getting home until gone midnight. So, I'm going to have to drop a class. The way I see it, college classes will always be there, but the job offer was a one-time deal. I think that Chemistry is going to be the one getting dropped; I have labs and lectures at 0800 4 days a week, so it's the natural choice. I can make it to 10 and 11am lectures with no problems, but 8am is going to be a push, especially if I have to stay late. Consequently, Chemistry is the obvious choice (obvious to me, at least).

The place I work at is close to Midwest University I'm ultimately pursuing my degree at, so this fall semester I'm going to try and take classes there instead of at Small Town College. I'm hoping to be able to take late morning/early afternoon classes and just go straight into work after I'm done. It'll make for a longer day, but it'll save me a lot of mileage.

Things are shaping up nicely, and life is good!

 

 

I don't know whether to laugh, cry, or be pissed.

*Hat-tip to the DrugMonkey for the photo*

I am sometimes ashamed to be human.

I don't know if I'm more ashamed to be of the same species as the people who are touting this, or the people who are fucking stupid enough to buy it.

This is charlatanism at it's finest; the modern-day equivalent of a snake-oil salesman selling panaceas to cure ALL ills. The people who buy this stuff...well, i'm keeping my opinions about them to myself. I'll just say that they're the same people who think that the internet is a series of tubes invented by Al Gore, that ghosts exist and that alchemy really is possible.

Gah.

To: NM’s body

To: Head  From: NinjaMedic CC: Sinuses; Nose; Throat; Temperature; Guts
Re: Inconsistency

Make up your bloody minds, will you?  Either hurt, or don't hurt.  Run, or don't run.  Be hot, or be cold.  All this hurt/run/hot one minute and don't hurt/stuffy/cold the next is getting to be a real drag and I've just about had enough of it (and you).

Oh, and you guts needn't think that you're off the hook just because I haven't mentoned you yet, because you're not: either reject food or accept it, and do it ONE END AT A TIME.   Your current work ethic of BOTH ENDS AT THE SAME TIME is unacceptable.  

Get your act together, all of you.  YOU HAVE BEEN WARNED.

Toodles,

NM

The Good News: the gate guard actually spoke to me when I handed him my ID card today!

The Bad News: he said " 'sup ". Nothing else, just a mumbled " 'sup " before he did the split-second-flip of my ID and handed it back to me.

*sigh*

Dear Gate Guards.

Dear Airmen on gate guard duty at Scott,

I'm not sure whether this has been brought to your attention yet, but your appearance and demeanor MATTER. You are repesenting not only your career field, but also your branch of service when you work the gate; you are the first thing visitors to this base see. Ever hear the saying 'first impressions count'? Yeah. Apply that to yourselves. It's not a good idea to wear unathorized clothing on the gate, and it's also not a good idea to wear a uniform that looks like you just rolled out of bed.

It's also a GREAT idea to verbally ackowledge that you've seen a person's ID and it's okay for them to proceed. Grunting is not acceptable, and neither is total silence. I never know whether it's ok for me to go through when that happens, and that's why I ask you. I'm not doing it to be a bitch, I'm asking because I've seen the damage all the security measures in place at the gate can do to a vehicle, and I really like my car the way it is. I'm not asking for an entire conversation, but 'thank you' or 'have a nice day' would be nice.

The gate is not the place to conduct personal conversations when traffic is backed up for half a mile. Take today, for instance: there was a long line of vehicles waiting to come on via the Belleville gate, and whilst there were two of you standing there, only one was checking IDs and waving traffic. The other one of you was standing there, and you were both running your yaps. That's a bad image to present, fellas. Both of you should have been taking care of business; your conversation could have waited until the line wasn't so long and traffic wasn't so heavy. It's ok to chit-chat, but not at the expense of the people coming on base.

You might want to take the security aspect of your job a little more seriously, too. Some of you take my ID and don't even LOOK at it, you just hand it right back to me. Others take it, flip it in a split second and then hand it back. I know that you can't possibly have seen the pertinent information on it in that short amount of time. How do you know that it's me, that it's my ID card if you don't look a the photo? You may think that I'm being pedantic and that it's none of my business how you operate on the gate, but I disagree. It's very much my business: security is EVERYONE'S business. I LIVE here; my family relies on you for our security.

I also think that how you look is my business. I'm proud to be an Air Force wife; I'm proud of my husband and his colleagues and the things they do for this country. When you look like a big bag of shite, it reflects on him, and by proxy, on me.

Today it was just me coming through the gate and noticing these things. Next time you may not be so lucky - it might be a General who notices and who takes action, or worse still, it could be a terrorist. The consquences from the former can be unpleasant, but the consquences from the latter...well, it doesn't bear thinking about.

So c'mon, guys. Get your act together before something catastrophic happens.

Love,

A Proud Air Force Wife.

Overheard in the classroom…

 

Student, to Professor: "where is your husband from?"

Professor: "He's from Spain"

Student: "Oh, so he's Eye-talian, then!"

Professor (glancing at me): *blink*

 

Same student, the next day: "I'm sitting here wearing this ol' thin tee shirt and I'm sweating, and you're there wearing a sweater and a vest, sayin' you're cold! I don't get it….I mean, what gives?"

*The student in question is very large. VERY large. As in 'need the FD for a lift assist' large. The professor is maybe 125 lbs.*

I wanted to say "what gives is that body fat insulates – much like blubber on whales. You clearly have a LOT of body fat. The Professor clearly does NOT" . . . but I didn't. I just made a mental note to blog what was said. I have a feeling that as long as that student is in the class, I'll have a nearly limitless source of blog fodder.

C

She was the kind of broad I aspire to be.

I met her at the end of her life, when time had blunted some of her sharp edges, but her incredible intelligence still shone through. We talked, but it wasn't like the conversations I've had with other hospice patients . . . there wasn't much chit-chat with her, oh no. During our first conversation we talked about how deja vue is actually a disturbance in the temporal lobe of the brain.

That was the shape of things to come.

She was incredibly intelligent, but she grew up in a time when it wasn't socially acceptable for women to hold jobs outside of the home. They were expected to be housewives, and if they DID have jobs they were supposed to be clerical in nature. Teaching was the most skilled profession women were allowed to have.

So, she taught. However, she did it in her own way. She majored in Chemistry and Physics - both traditionally male subjects - and she taught first to High School students, then when she'd gone to graduate school and attained a PhD, she taught college students.

She said that she never saw her gender as a hinderance, that she saw it was a weapon to be deployed when she needed to use it. Her family showed me photographs of her when she was in her prime, and man alive was she ever hot. Smoking hot, to be exact. I can imagine her using her body and appearance to break down the walls that her gender created. I admire her for doing that, for not taking no for an answer and for working with what she had to get to where she wanted to be.

She married and had babies, but she still taught, right up until she was in her 70's. When she retired, she enrolled in some graduate classes and was very proud of the fact that she was 40 years older than some of the other students.

Usually there is a great deal of talk about the spiritual and supernatural at the end of a person's life, but she, in her typical style, would not entertain or tolerate what she described as 'nonsensical mumbo-jumbo'. She said that she was perfectly comfortable with the knowledge that life was all there is and that she didn't want any tears or talk of having gone to a better place. "I've done what I wanted to to and I've made my mark" she said "that's enough for me".

Time wore her down; it aged her body but her mind was still there. When she couldn't read texts because she couldn't see the words, she had someone dictate them to audio tapes and she listened to them instead. It seemed as if her headphones were permanently attached to her head; she was wearing them every time I saw her.


She died very quietly and peacefully after having lived for a century. She donated her body to a medical facility, which I find fitting: she loved science and in the end she literally gave herself to her cause.

Against her wishes, I cried.

$.02

I have to say something about Haiti.

I'm in a unique position; The Hubs is directly involved in the humanitarian relief efforts and has been working all kinds of hours to get the job done. I get information that, whilst it's not classified, isn't common knowledge, either.

My initial reaction was that I wanted to go, that I wanted to go work as an EMT and help the injured. I speak French, I could at least translate...I wanted to go. When I mentioned that to The Hubs, he gave me a look that I simply cannot describe and he said "No. Absolutely not. Scene safety, K."

He's right. As medics, we are told time and again that if the scene isn't safe, we don't enter it. Haiti wasn't exactly stable to begin with; now it has no organized infrastructure whatsoever. It's literally anarchy on the streets there and it's not safe.

Imagine the largest mass casualty incident scenario your medic instructor gave you to triage when you were in class. Now, multiply that by 100,000. Now, try to triage that...triage that whilst looking over your shoulder for assailants, and try and treat the injured with minimal supplies. Try and do your job with literally nothing, in the midst of decomposing corpses and people who haven't had water or food for three days.

It's a horrible situation. It is a logistical nightmare, a clusterfuck of epic proportions. I've heard horror stories of combat medics coming across people with crush injuries to their limbs, who are developing compartment syndrome and who are in desperate need of surgical intervention....intervention that simply isn't available. I've heard it described as trying to treat patients with one hand tied beind your back.

It's so frustrating to see a need, know that you have the capability to help solve that need, but not be logistically able to render assistance.

The likes of Pat Robertson and Rush Limbaugh don't do anything to relieve that frustration, either. Why are they still on the air? How can any human being with even an ounce of common sense actually believe what they say? Why do we as a society tolerate such blantantly hateful statements? Pat Robertson is a doddery old fucker who is clearly demented, and Rush Limbaugh is a bloated, narcissistic, pill-popping tool who actually believes his own hype. It pisses me off that they breathe the same air as me....as far as I'm concerned, they're both wastes of human flesh.

It's supposed to be a three-day weekend here. The Hubs worked all day yesterday, came home to eat, went back until midnight, is working until midnight tonight, tomorrow night, monday night...there isn't any downtime slated for the near future for his section. They are all busting their arses to get the missions manned and get the aid where it needs to be, when it needs to be there.

Apparently we learned NOTHING from Hurricane Katrina.

She's Found.

Annie had Alzheimers.

She was pleasantly demented; she wasn't ever combative or mean. . .she was agreeable and easy to care for an just a joy to be around. She was one of my favorite patients when I first started working, a sweet, funny, gentle soul housed in a confused little old lady body.

She wandered. Perpetually. Eventually, I had her tag along with me when I made my rounds. She was content to go from room to room with me and it was a win win situation: she was occupied and calm, and I knew where she was. Even if she wasn't assigned to me, she'd still tag along. The routine helped her.

Occasionally, she would get away from me. I'd hear a commotion from a room down the hall and I'd hurry down there to see what was going on. The complaint was always, always the same:

"She's in my bed!!!"

Annie was unable to differentiate between rooms, so when she felt weary or thought it was bed time, she'd enter a room, pull down the covers, take off her shoes and pants and get into the bed. She thought every room was HER room.

I tried all kinds of things to help her. First, I made a sign with her name on it and put it on her door.

"What does that say?" I'd ask.

"Why, that says 'Annie'! That's me, isn't it?" she'd respond.

"Yep!" I'd say "that's how you tell this is your room! Your room has your name on it!"

"Oh! I see! My room has my name on it!"

It worked for a couple of days and I'd think we'd found a solution to her wandering. Then, I'd hear a ruckus from a room and the familiar cry of "she's in my bed again" and I'd go retrieve Annie and show her the sign on the door and put her to bed in her own room....and 5 minutes later I'd feel a tug on my scrubs and turn and see her standing there, smiling at me.

When it became clear the the name wasn't working, I took a picture of her, enlarged it, framed it, and hung it on her door above the name tag.

"Who's that?" I'd ask.

"Why, that's me! Don't I look pretty?! Goodness, what a nice thing you did for me!" She'd say.

"This is how you tell this is YOUR room, Annie" I'd say "All you have to do is look at the door. Annie's room has Annie's picture on the door"

"Oh! What a good idea!" She'd say.

The photo idea actually worked for a few months. There were incidents where she forgot to look at the door and clambered into someone else's bed (once she got into a man's bed when he was still in it. It's a good thing he still had his wits about him and called for help - if he'd been demented who knows what would have happened) but for the majority of the time the photo was enough to remind her that she was in the right spot.

I went back to college and found working full time and academia were not a good mix for me, so I quit that job. I went to visit Annie occasionally - I don't think she remembered me, but she was always smiling and seemed pleased to see me.

The last time I saw her, she was in a wheelchair with a cushion tray in front of her and an alarm clipped to her blouse. It wasn't restraints per se, but it did prevent her from getting up alone. Apparently her wandering had become problematic and the staff felt the need to confine her.

She was wilted. She sat with her head in her hands, face slack and expressionless. I knelt beside her chair and took her hand in mine.

"Hey, Annie. . . how are you, my sweet?"

She made no attempt to resond to me. She stared at the cushion in front of her, a light glaze of drool covering her lower lip. I took a kleenex from my pocket and wiped it away. I craned my neck further downwards, trying to meet her gaze, hoping that another human face in her field of vision would stir some response in her.

My eyes met hers. . . and there was nothing in them. No recognition, no sign of life. Nothing.

She was in there, but she was unreachable.

I saw her name in the obituaries this morning and for a brief moment I felt an icy stab of grief in my chest. . . but it was quickly replaced by relief and a sense of joy. She's free now, you see. I don't know what happens to us after we die; I don't know if we go on to another place or if this, this world and existence, is all there is. All I know is that Annie is not here anymore, that the torment that was her daily existence has ended.

She's not lost anymore. However you look at it, whatever you believe, one thing is true: she's not lost anymore.

She's found.