Waiting Room Annoyance #231: TV Torture

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I’m all for TV as a distraction in the waiting room.  It helps pass the time. It takes your mind off your troubles, and it entertains the young ones at the pediatrician’s office. It’s an indicator that the doctors and staff care about your experience. Customer service in the waiting room is often lacking, so when I see the television on the wall I say, “At least they’re giving me something other than year-old magazines to pass the time.”

But…

It’s the sign that makes me cringe. Often the flat-screen comes accompanied by a handwritten sign that reads, “Do not change channel or volume.”  It might as well say, “This is a torture device. Follow the rules, or we will turn on an obnoxious game show or a rerun of Jerry Springer!”

Usually, I carry a book with me to the doctor’s appointment, but sometimes I just can’t concentrate with all the noise of people signing in and those who can’t seem to find their “waiting room voice”.  (Look for more on that in a soon-to-be posted Waiting Room Annoyance #232!) In those instances, I will tune in to what’s turned on, but I keep my fingers crossed that it’s something good.

News is good.  I don’t have a chance to get the latest every day, and I like to stay up on my current events. CNN, MSNBC even a little Fox News is okay now and then.

“High-end” talk shows are good too.  You know the type I mean–Oprah, The View, Dr. Phil on a good day.  They’re entertaining, some-what educational, and they rarely have to bleep out profanity.  I don’t have anything against an impromptu four-letter word, but there’s a problem when the censoring sounds like a test of the emergency broadcast system.

Game shows reside on both ends of my tolerance scale.  Who Wants to Be a Millionaire is good, except when the person next to me thinks she’s one of the lifelines and yells out the answers to the questions.  Let’s Make a Deal is a different story–too much shouting, too much dinging and too much desperation.  Just think about how low you must be to wear a Bo Peep costume on national television!

Dinging, yelling, bleeping, fake laughing, fake crying, fake shouting…Make it stop already!  I give up.  I’ll be quiet patient.  I won’t ask too many questions.  I won’t complain about the long wait.  Please turn the channel!

Here’s hoping you come out of your next appointment with your sanity!

K

 

Free to a Good Home

Image via Wikipedia

I’m trying to get back to that place where Crohn’s disease does not define me. I think this might be the best approach…

FREE TO A GOOD HOME
One overactive immune system.
Particularly aggressive to the small bowel.
Comes complete with interintestinal complications: arthritis, skin rashes, and more!
Warning: This is not a starter set. Experience required.
Guaranteed to give your health insurance a workout!

K

 

 

Retail Therapy For the Soul

Forget chicken noodle soup. For me, retail therapy–good old fashioned shopping–is the cure-all. Give me a mall, a department store or even a mass retailer (Target–with the French pronunciation–is my discount drug of choice.), and I can go from “Blah” to “Yeah” in an afternoon.

I have been feeling a little blah lately.  Too much work stress + too much CD stress + a negative allotment of me time – one happiness quotient (in the form of a recently college-bound teenager ) = an irritated, weepy, tired, slightly depressed retail junkie!  What I need is a fix.  I’m craving that endorphin rush that comes with the blip, blip, blip of the scanner and the cha-ching of the cash register! I must SHOP!

In a pinch, you go with whatever you got. So, off I go with a school supply list in hand. The college-bound teenager called last night with an urgent request for his mom’s expert shopping skills.  I can get a shopping fix and a mom buzz all in one.  Perfect.

Naturally, I detour from office supplies to the seasonal aisle, and there it is. My savior. The thing that lights up my eyes and brings a delighted smile to my lips. Shoes? No. Makeup? No. Cute skirt with matching jacket? No.

The thing that brought me to the verge of happy tears was…a nutcracker.

You see…This…

Reminds me of this…

See the resemblance? That’s my little boy–the one who went away to college.  For him, college is the US Military Academy at West Point, so I have fondness right now for all things patriotic and clad in digitized camo.

I feel good right now.  My nutcracker is on the mantel.  I have a flat rate box stuffed to bursting with notebooks, pens and protein bars, and for a few hours today, my worries were gone. Chicken noodle soup has nothing on my credit card!

 

Attack of the Killer Organ

Image by ianmyles via Flickr

I feel like I am under attack.  After so many years of Crohn’s Disease, you would think this would be nothing new to me.  CD is an autoimmune disease, after all.  My immune system thinks my digestive system is the enemy and has been waging war on multiple fronts for decades.

My problem, though, is that even though I’ve had this disease for over 20 years now, the diagnosis itself is a relatively new one.  My acceptance of that diagnosis is even newer. If you had asked me four years ago if I suffered from irritable bowel disease (as if that comes up in everyday conversation), I would have replied, “I used to.”

You would have looked perplexed and asked, “How is that possible.  There’s no cure for IBD.”

“There is if you have ulcerative colitis,” I would have responded, quite pleased to tell my story of survival.  “I used to have ulcerative colitis, but I had my colon removed. No colon. No more ulcerative colitis.”

That all changed when my gall bladder died in the spring of 2007.  Yes, it really did die.  It was working fine one day (letting me enjoy peanut butter and all those other not-necessarily good for you foods), and the next day, I was on the phone with the GI and the PC (really, any medical professional who would listen) complaining of pain and nausea like I haven’t experienced since before they took out my nemesis, the colon.

After weeks of testing, the nausea was so bad that Hubs rushed me to the ER, at which point someone finally read the results of the last test and said , “Oh, her gall bladder isn’t working.  We’ll need to take that out.”

“Finally,” I thought, “Relief from the pain.”

Wrong.

Two months later, I was still complaining of pain in my upper abdomen–the same place that hurt during the gall bladder incident.  So, off I went for several more rounds of CT scans, MRIs and ultrasounds. They all came back negative. Another eight months passed (yes, it took that long to run the tests and say there wasn’t anything there) before my GI had the bright idea that maybe this was somehow related to my original diagnosis.

Finally, I made my way to Dr. G., a colorectal surgeon who specializes in Crohn’s Disease.  She even travels outside the country to run research on treatments. (The fact that she can’t do them in the US says something.)

Anyway, before Dr. G. would see me, she asked to see the records from my original surgery.  After much begging and faxing, the records finally made it from PA (where I had the surgery) to KY (where I live now).  She looked at them, then looked at me.  She looked at them again, and then back to me.

“Did anyone ever explain to you the pathology of your colon?” she said, as if she was asking me to start discussing the latest subject of our book club.

“Not really,” I replied, because no one really had.

Apparently, after they took the diseased organ out of me, they took it to a lab where some tech cut it into little pieces, put it under a microscope, then wrote “indeterminate colitis” in my file–which is code for “misdiagnosis.”  The results of the pathology, Dr. G. explained, were more consistent with CD than with UC.  “You probably never had ulcerative colitis,” she said, “but let’s do a really expensive blood test to be sure.” (Maybe she didn’t say it exactly that way, but that’s what my insurance company said.)

So, we did the really expensive test, and yes, it showed that I most likely had and continue to have Crohn’s Disease.  Dr. G. put me on some potent medications because I had gone untreated for so long, and I started to read a little about CD.

But even after all the new meds, countless endoscopies to stretch strictures and two more surgeries to remove them (strictures are a common complication of CD), I don’t think I ever truly believed the new diagnosis.  Those strictures that needed removed and repaired and stretched were both at the site of my original surgery.  That surgery was done 13 years earlier.  They do it different now, my denial kept telling me.

I didn’t start to believe Dr. G. and her blood test until about two months ago.  Back in February, I started experiencing a lot more pain than usual.  It was in a new place (near the liver) and much more intense than anything I’ve felt for a while. Of course, I did more tests–MRCP, ultrasound, CT scan–that all came back negative.  My GI gave up and said he wouldn’t see me again until I made an appointment with Dr. G.  (I think he thought this new pain was all in my head.) Dr. G. took a look inside, and gave Hubs her report.

Even in my drug induced state I remember what she said.  ”There’s a small patch of Crohn’s Disease in her small intestine”, she said.  That means she saw it.  For the first time, there is evidence (not just a mystical blood test), that I have Crohn’s Disease.  I have a disease.  I am sick….and I’ve been untreated for decades.

My bravado is fading, and I am tired.  I look back at all that has happened, and I am tired of it all. The medicine, The doctors. The tests. The research. The constant lying when asked, “How are you.”

I’m sick.  That’s how I am.

Next time, we’ll talk about my latest diagnosis–the one that was presented by that unbelieving GI just five days ago.  I can’t get excited to write about it yet. I promised I wouldn’t be entirely negative in this blog, and I have a feeling that’s where it would turn if I continue today.

Let’s just leave it at this…I am under attack, and the enemy is me.  That is life with Crohn’s Disease.

K

 

In Sickness and in Health

Nineteen years ago, I said “I do,” to the man of my dreams.  I wore the most beautiful mermaid wedding dress and he had my heart racing in his dress blues. He had just been commissioned as a second lieutenant in the US Army, and I thought (and still do) that his uniform was far more dashing than any tuxedo.

Neither of us wanted to do anything “ordinary” for our wedding, so we wrote our own vows, focusing on what we thought would be our version of “for better or for worse”.  Back then, the biggest hurdle we thought we would face was being separated because of some kind of military deployment. I had already been diagnosed with ulcerative colitis (a misdiagnosis that we’ll talk about in a later post), but we never saw that as a challenge to our relationship. It was never mentioned in those vows we spent so long crafting all those years ago, and I have to wonder if we were optimistic or just naive.

As I look back on what has challenged us most, it hasn’t been stress from long separations or financial worries (although we’ve had our share of both). What has tested our commitment to each other has been an ongoing battle with one health crisis after another.

My husband has held my hand in countless waiting rooms and hospital beds. He’s walked the halls of ERs more times than he would care to. He’s been with me through five major surgeries and been my chauffeur to and from no less than 20 endoscopies. (It’s probably more than that, but the anesthetic does create amnesia, so I’m not really sure.)

He’s cried with me when we decided to not risk my health with another pregnancy…then smiled when we decided to try again…then cried once more when we were finally told it was impossible because of all the scar tissue from my first round of surgeries…then finally, rejoiced with me on the adoption of our beautiful daughter. (There are many ways to grow a family.)

He knows that I don’t always say when I’m not feeling well and that sometimes I just need to vent. He knows there are good days and bad. He knows that I pray I didn’t give this to our son and that sometimes, the best medicine is a hug and a good night’s rest.

So, were we optimistic or naive? I think it’s a little of both mixed in with the facts that we were young and in love. I do know that I couldn’t have gotten through all that has happened in the last 19 years without him. I am also well aware that many marriages cannot survive even a portion of what ours has.

I have more scars than I did back then. The diagnosis has changed (from UC to CD), and there are more meds than there used to be. There is also stronger faith and richer love, and that makes all the difference.

I love you hubby! For better or for worse. In sickness and in health.

K

 

Women Are Better

It’s a fact….Women are better than men. Now, before all the men out there start talking about how strong they are and how they can fix the carburetor faster than I can, let’s look at the research.  (Yes, guys, there is research to back this up.)

• Women are better at seeking comfort – According to a 2009 survey, 53 percent of women talk to their friends about what’s stressing them out, as opposed to 29 percent of men.
• Women graduate from college more often and faster than men – The New York Times reported that “Women are leaving men in the dust” when it comes to college.  Female enrollment is higher, we tend to graduate more often, and when they do get a degree, it takes men more than five years to do it!
• Women live longer than men – This is nothing new, but I feel compelled to add it to my list because, well, if you’re going to be good at something, this is just about as good as it gets.

I could go on and on, but an article on Cosmopolitan.com does a really good job of backing me up.  In fact, it’s where I got my ammunition.  I wanted to have my facts in line before I wrote the heart of this post…My hubby is a bad patient. And, I’m not talking about the typical whining and need to be waited on that men are known to do when they get the sniffles.  A series of recent events proves that I am much better at “doctoring” than he is.

Let’s take a recent ER visit as Exhibit 1.  Two weeks ago, Hubs comes home from a grueling day behind the desk complaining that his leg is hurting.  I’m not immune to feeling concern when he says something is physically wrong, so I asked the typical questions.  When did it start to hurt? What were you doing when it started? What kind of pain is it? Sharp? Dull? Throbbing? (I know all the typical triage inquiries.). The answers…It started that afternoon.  He wasn’t doing anything (code for “I didn’t lift weights or run a marathon”), and it just hurts like a deep bruise. Hmmmm.

That night, he iced it which helped, but in the morning, he could barely walk, (Yes, a little scarey.) and now there was a six inch patch of red, tender skin at the top of his thigh!  He insisted I touch it.  I admit that I really didn’t want to.  The first thing that popped into my head was “shingles”. Rationally, I know that affliction usually shows up on the back and in a line or a band.  This was more of an irregular circle.  I did touch it to verify that yes, it was warm to the touch, but when he wasn’t looking I doused my fingers in hand sanitizer.

I recommended that he take himself to an immediate care center to get a medical opinion right away. He insisted that the ER was a better option.  My experience says that he’d be seen quicker and while it’s not a hospital, many ICs in the area have x-ray and ultrasound equipment. However, they don’t open until 9:00 am, and he wanted to go somewhere right away.

So, off he went. (He insisted that I didn’t need to go to hold his hand.) Now, legitimately, there was some concern with his symptoms.  Shingles was one–they ran a blood test to try to rule that out along with other various infections.  The other was a blood clot. Fortunately, an ultrasound conclusively found none of those.  But after three hours, they had no diagnosis.

He called me when they discharged him with prescriptions for antibiotics and a pain killer. “I can’t believe I was there for three hours,” he said, “and they still can’t tell me what’s wrong!”

“Really,” I said.  “Three hours.”

“They did all those tests, and they still can’t tell me what’s wrong.”

“A blood test and an ultrasound, right?” I verified.

“Yeah, and all they can say is it isn’t a blood clot. I want to know what’s wrong.”

I have to say I’m proud of myself because I really wanted to fire back, “Three hours? Seriously? You’re complaining about no diagnosis after three hours and two tests? Really?” Most recently, I’ve had pain in my abdomen since February. (That’s, six months if I’m counting right, and I’m pretty sure I am.) I’ve had countless blood tests to check liver functions, metabolite levels and white blood counts.  I’ve had an ultrasound, a CT scan, three endoscopies and an MRCP (a special MRI for the abdomen), and it’s only been two weeks ago that the doctors (my GI and my surgeon) think they might, quite possibly know why I’m hurting so bad.  Of course, they aren’t sure, so they need to do another “non-invasion” (really???) endoscopy to verify their assumption, and even then they won’t be sure.  They never are!

So, I’m pretty sure I’m better at this patient thing that he is.  I don’t like to claim that title, and he’s assured me that in this area, he doesn’t want to compete with me. Am I doing a happy dance because I can be a more patient patient than he is? No. I’m not really that patient when it comes to waiting to feel better.  I want the answer NOW too, but I guess I’m a little more realistic. The reality is, it takes time. You have to wait for your appointment. Then wait for the test. Then wait (and wait and wait) for the results, and quite possibly at the end of the day, you won’t know any more than you did before. That’s life as a patient…wait and wonder.

We now think his aches and pains were the result of a very nasty spider bite. Once the swelling went down, we could actually see the puncture site. I don’t want to see the spider that brought down my hubby. In my mind he’s big and hairy with fangs the size of my fingers.  In actuality, it’s probably teeny, tiny…and female, because as I’ve proven–women are better than men!

See you in the waiting room,

K

 

Postal Stress

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When I saw it on the counter, I was immediately filled with dread. It was unassuming enough–just a plain, white, #10 envelope nestled among the catalogs and junk mail.  It wasn’t even the envelope that caused that immediate flash of stress and the sickening feeling in my stomach.  It was the return address that seemed to scream, “This is from your doctor, and it can’t be good!”

Over the last three years, as my Crohn’s Disease has started to flare again, so have the bills and the insurance explanation of benefits that really don’t explain anything and the summons to register at ABC hospital on XYZ day and please don’t eat, drink or sleep for 12 hours prior.  It all makes for a stressful event when rifling through the mail–just one reminder after another that something isn’t right.

So, today as I faced the newest addition to my collection, I pondered what it could be.  A bill? Well, it can always be a bill.  Those seem to be never ending. As soon as I pay one for the hospital, another shows up in its place.  This time from the lab or radiology or some other person who happened to cross my path while at said hospital.  Why can they not send one bill, so I can just be done with it already?

Maybe it’s just a reminder about tomorrow’s CT scan. That thought, though, reminds me that I can’t eat or drink after midnight, which means I can’t have my favorite butter toffee coffee with cinnamon bun creamer in the morning.  And that just makes me mad.

Results? It could be results of some long forgotten test. That seems highly unlikely.  My doctors don’t send results. Half the time they don’t even call in a reasonably expected time frame. I’ve given up worrying over not knowing the outcome of tests and procedures. I figure if the professionals aren’t worried, I shouldn’t be either. Life’s too short.

Uh oh!  What if it’s a letter saying my doctor has left the practice and is moving to Fiji? That’s happened on more than one occasion.  Not the Fiji part, but the leaving the practice and moving part. The feeling of abandonment is horrible.  I lost a neurologist that way and two primary cares.  And most recently, my GI switched practices.  Fortunately, he stayed in the area, so I could move with him, but I wasn’t able to schedule my first visit at the new place before my prescriptions ran out. Begging for meds over the phone while I’m at work is just not something I want to have to do again.

All right. Time to get this over with. Deep breath in.  Let it out…and rip the envelop. Pull out the paper.  Unfold it, and…Whoa!  What is this? It’s blue and kind of marbled with the words, “Pay to the order of” followed by my name.  They’re paying me this time?

That’s what the accompanying letter says.  “In reviewing our records we found an over payment on your account. Enclosed please find a refund check.”  They fail to admit to over charging me, but I’ll let that slide this time.

Today’s postal stress is finally over, and for once I’m feeling kind of happy about a medical-related letter. My bank account is a little bigger, and I’m in the mood for retail therapy!

See you in the waiting room!

K