NomDebPlume's 2½ Cents

Because I have an opinion about everything…

Archive for the tag “Crohn’s Disease”

Insult to Injury / Illness

If I read one more person lament about being unable to gain weight because of their Crohn’s Disease, I will very likely scream out loud to the point where I will frighten my neighbors.  There is most definitely a benefit to the several online support groups I visit; other patients can share information and consolation in ways most doctors just can’t, and that really helps.

In a recent thread started by a woman who wanted to know if anyone else couldn’t lose weight, despite the disease restricting her ability to eat, the comments started coming in fast and furious.  As someone who deals with this same problem, I felt less alone in my struggle when I saw how many others really know the pain and frustration I feel daily.  It’s not a “misery loves company” thing, really – it’s more an “I’m not the only one (a freak)” feeling that makes me feel a bit better.

What does not help is a person showing up to the thread adding their comments about how they are 5’9″ and only 115 pounds.  So, basically, you’re complaining that your height and weight is similar to that of a Super Model??  And, let me see if I understand: you consider this is a freakin’ problem?  Question: Does the inability to gain weight [so you can stop resembling a Super Model] also eliminate your ability to realize it is inappropriate and most certainly NOT helpful for you to share this in a thread where the rest of us are commiserating about our complete failure at losing any weight?  Why not contribute to the person who commented about how utterly horrible it is to have people continually tell them, “you really need to eat more” because she DOES eat normally, but just cannot gain weight.  “They just don’t understand.”  There was a whole whine-fest going on over there and you’d fit right in.  Courtesy: http://femaleimagemedia.blogspot.ca/2008/11/model-behavior.html

Here’s the thing that really upsets me: in our society, your “underweight-ness” is completely acceptable – praised, appreciated and envied, even.  Until a person literally looks like a skeleton, they are considered attractive (even then, you might find walking skeletons on runways during Fashion Week).

But for those of us who are bloated from steroids and other harsh medications, overweight from a diet that restricts fruits, vegetables & other complex carbs (Oh, my kingdom for a salad!), out of shape because this disease combined with the side-effects of all the drugs that keep us alive and out of the hospital [for now] drain us of so much of our energy that we can only do what we absolutely have to… and even that is sometimes impossible.  Us?  No, we’re not attractive.  We’re not understood.  We are quickly and thoughtlessly judged, labeled as “fat and lazy”, with an underlying implication that we are also stupid.

We may be fat, but we are not lazy, and certainly not stupid.  We are at war with our bodies and at war with Crohn’s Disease just as much as much as our thin, attractive, socially acceptable counterparts, dealing with all the same horrors this disease has brought into our lives — only, we deal with more.  We also live with societal stigma and the butt of even more jokes: Fat jokes are always funny, right?  Just like bathroom humor.

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Home, Hospitals, Holidays and HIPAA

 

 

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To write that being in the hospital is anything but unpleasant and something we all wish to avoid would be obvious and unnecessary. Yet sometimes, it is the only way to enable someone to return to good health, or at least better health. And during a stay at the hospital, there are things we can learn – other than exactly what diagnosis put us there in the first place.

Beginning with how grateful I am for my own bed and pillow, I personally learned how much I really do appreciate the mundane, annoying chores I do on a daily basis that normally give me only the slightest gratification. I missed getting my children ready for school and making my 7-year-old’s school lunch at 6:30 each morning. I missed doing laundry, cooking dinner, paying bills and loading/unloading the dishwasher. After 6 days away, I missed seeing my family every day – even when they were in my face making too much noise when I wanted to be ‘alone’. For the most part, I was alone each one of those days, all day… all night.

It is a conundrum of human nature, I think, to initially be content with what we have… then dissatisfied once we have it for a while… then miss it and want it back once it is taken from us. Or maybe I am the only one who is guilty of this unappreciative tendency, along with the lack of appreciation of the phrase “at least you have your health”.  Spend some time as an anxious patient in the hospital and you, too, may eliminate the words “at least” from that sentence… at least for a while.

Because my stay in the hospital was a bit longer than average, I enjoyed the company of 4 different roommates, 2 of whom were sicker than I was. If not ignored, this benefits one’s perspective; focusing on the pain and anxiety of my roommates was definitely helpful in temporarily diverting attention away from my own problems. While I felt bad for what these two women were enduring, I admit I felt grateful that it wasn’t me. And when I pray for my own health and future, I remember them, too.


Now, since I am never one to overlook the political aspects of an experience… :-/… I was surprised, perhaps even shocked, to learn that our HIPAA Privacy Laws that we are told are so vitally important (and the related paperwork that stuffs landfills everywhere) were broken on a regular basis. If you’ve ever visited a doctor’s office, you’ve signed a HIPAA form that prevents the sharing of your personal medical information without your expressed consent. If you’ve ever watched a television police drama where they need medical records, you’ve probably noticed they need a subpoena to get/view medical records, even if the person is DEAD.

Well, I was privy to dozens of people’s medical records while in the hospital every day, without a subpoena or anything… using just my ears. My hospital room was close to the nurses’ station and every time the shift changed, the nurse on duty would relate each chart’s information to the nurse coming on duty. She would go over each chart, starting with the FULL NAME, diagnosis, doctor’s orders/medications, details of what transpired during her shift, and for some patients, some added anecdotal information, such as “what a nice woman she is,” or “he’s a real nasty one”. I wasn’t trying to hear what they were saying, their voices echoed into my room and to my bed, which was the furthest from the door.

Thankfully, I didn’t recognize any of the names I heard, so all of this information means absolutely nothing to me, but what if I DID know one or more of these patients? I would now know their private, medical history (unless I stuck my fingers in my ears and did that la-la-la-la-la thing). And who might have heard MY medical information? There could have been someone there who recognized my name from seeing it on my check at the grocery store, or the pharmacy, etc. Now they know exactly what is ‘wrong’ with me. I’m not liking this. Why don’t the nurses have a room with a closed door where they can do this confidential job? Why do any of us sign those HIPAA forms in the first place – are they just to make us THINK our privacy is being protected? Hmm…

hear-see-speak-no-evil

 Whatever the case, I was released from the hospital the day before Thanksgiving and enjoyed a toned-down eating experience, but a day full of more gratitude than usual. I valued this more than the usual type of celebration, and hope I can remember this important lesson for future years without preceeding the holiday with an unpleasant trip to the hospital.

 

While all of this is so fresh in my mind, allow me to wish each of you a Holiday Season full of gratitude and good health…
:-)
 

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