“I know God will not give me anything I can’t handle. I just wish that He didn’t trust me so much.” — Mother Teresa
“I know God will not give me anything I can’t handle. I just wish that He didn’t trust me so much.” — Mother Teresa
The following post contains far too much information about my internal organs and my sex life. The management of this blog accepts no liability for any psychic trauma that may occur as a result of your continuing to read. Proceed at your own risk. No refunds or exchanges.
They say to write what you know, and after many months of practice, I know a thing or two about being sick. Regrettably, I just jumped into this without any training or practice; I’d like to spare you from making the same mistakes I did, so I’m passing along a few tips here.
1. Before you get sick, get in excellent shape. If you need to lose weight, do so. Shape up for your illness as though it were a class reunion. I didn’t train. And this is what I learned: If you’re already thin, and you unintentionally, inexplicably lose 20 pounds in three weeks, trained medical professionals will exclaim, “HOLY CRAP! You must really be sick!” However, if you really could stand to lose those 20, and you proceed to do so, these same trained medical professionals will note the rapidity as an aside, but will think, and say, “Good for you!” And they will do this even though their professional medical training has surely taught them that NO ONE (with the exception of those people who are eligible to appear on Dr. Phil, Maury, etc., because the walls of their homes must be removed to get them out) is supposed to lose 20 pounds in three weeks.
2. Select your illness carefully. None of us wants to be ordinary. Choosing a common illness is like showing up at a family wedding wearing the same dress as your cousin. However, there are better ways to express your individuality than through your choice of illness. I have always wanted to be just a bit outside the norm. But I admit, this time I’ve gone too far. My illness is not in their textbooks. It’s not even on the freakin’ internet. If I had it to do over again, I’d go with something that a movie has been made about . . . or at least something that has already appeared on House or Mystery Diagnosis.
3. Remember, when you’re putting together symptoms, less is more. I went way over the top here. I piled on symptoms like I was accessorizing for an early ’80s Madonna concert. Just plain tacky. This practice, my friends, will get you nothing but pissed-off doctors. They like symptoms to remain within one major system, say, the digestive system, or the respiratory system. When you start mixing and matching, breaking the rules, you’re just asking for trouble. I, for instance, may have been able to stay off the Difficult Patient List if I’d stuck to diarrhea, abdominal pain, weight loss, appetite loss, early satiety . . . even the bloating might have been OK. But no, I had to throw in laryngitis, constant feeling of my throat closing, difficulty swallowing, intermittent mouth sores, chronic low-grade fever . . . And as if that didn’t annoy the docs enough, I had to gild the lily by adding pain in ALL my ribs and mysterious, painful small lumps that appear and disappear in my abdomen and flank. Yes, flank. I admit it; I have no taste when it comes to putting together a respectable set of symptoms. (Oh, and “fatigue,” as a symptom? Don’t even waste your time. The docs just think, “Pfft. I’d be fatigued, too, if I spent all my time going around to doctors listing all those symptoms!”)
4. Practice an air of bored nonchalance for when you see words like “cyst” and “tumor” on your radiology reports. Now, this is important, and it’s one of the tougher tips I’ll give you. You need to know that once you select your too-many, too-varied symptoms, you’re going to learn things about your insides that you will wish you didn’t know. Because most of us don’t have pictures taken of every part from every angle, every other week. But once you’ve made that bed, you’re gonna have to lie in it, sister. I now know that I have cysts on liver, ovary, uterus; a “tumor” on the other ovary; a calcification on my adrenal gland; and intense metabolic activity in the uterus. This is all WAAAAAAAAAAAAAAY TMI, people. A little self-knowledge goes a long way when we’re talking about your insides. You’re not supposed to know these things.
But once you do know them, you’re supposed to forget them, or at least pooh-pooh them, when the docs say, “But that’s nothing. That’s not what’s causing your symptoms.”
Oh, you’ll want to say, “But, but, but . . . we don’t know what IS causing my symptoms, and these things don’t belong, so couldn’t it be that maybe . . . “
But if you do, the docs will say, “Bup bup bup . . . talk to the latex-gloved hand! Stop that whining! We don’t know what’s wrong with you, but we know what isn’t! Pay no attention to those growths inside of you!”
And then you should say, “OK,” and go spend hours on the internet trying to find out what is wrong with you. Because you are the only one doing so.
5. Show a little initiative by performing your own self-tests whenever possible. For example:
Susie: I have to be honest with you. That wasn’t making love. That was actually a diagnostic procedure, intended to rule out “painful intercourse.”
Jif: Oh . . . well, did we rule it out?
Susie: Oh, yea. I hope you don’t mind being used as a diagnostic tool.
Jif: You know I’ll help in any way I can.
6. Know which symptoms to keep to yourself. This would be anything that falls under the diagnostic rubric of “normal human emotion.” Just don’t go there. If, in a moment of weakness, after you’ve been working your symptoms of choice for well over three months, you admit that you’re feeling, say, “anxious,” or “depressed,” or any such thing, you will be sorry. Oh, you’ll get your diagnosis alright. The docs will be all over those words like ugly on a hospital gown.
“AHA! It’s stress!” (This does not represent a flaw in any one particular doctor; it has become apparent to me that they are taught in medical school, “When all else fails, play the stress card. Your patient will become very agitated and unreasonable, perhaps even verbally abusive, thereby confirming your diagnosis. Never fails.”)
7. Have an outlet for the crazy. Preferably one in which kind people appear to give a rat’s ass about what you have to say. Take . . . blogging, for instance 🙂
“Our brightest blazes of gladness are commonly kindled by unexpected sparks.” — Samuel Johnson
I should have known he’d be a strange bird when I called to make the appointment. My dear friend, Marcie, had recommended him, but warned me that he was very popular, and that even she, an established patient, had had to wait quite some time for an appointment recently.
“Hello, I’m hoping to get an appointment with Dr. B. I’m a new patient.”
“What will you be seeing him for?”
The list of symptoms is too long, and I’m hoarse, and I’m near tears, as I often am these days. Deep breath. “I’ve been very sick for a long time and no one knows what’s wrong with me.”
“Dr. B. can see you at 9:00 next Wednesday.”
“Wednesday? Five days from now?”
“Yes. What is your name?”
Had this doctor actually given his office staff instructions to be kind to people? Sick people? And to use some judgment as to who would be seen when, based on how desperate they seemed to be? And I didn’t leave out the part where she asked about what kind of insurance I have. She did not ask. I should have known then that the guy was a weirdo.
When I arrived, the front desk people were friendly. I waited about 15 minutes, and then Dr. B. himself came out to get me. He didn’t put me in a holding cell. He brought me into his office, and took my thick stack of lab and radiology reports.
“It’s a long story; I’ll try to give you the short version…”
“Tell me whatever you need to tell me.”
So I did. And he listened. And during the next half hour that he spent with me, he took about 12 phone calls. Actually answered them while I sat in the chair in his office, or lay on the table in the exam room. At first this was disconcerting to me. And if it had been anyone else, it would have pissed me off. But it didn’t. This was clearly just one of the quirks that make him him. Obviously, his staff has no concept of “holding” calls. If someone asked for him, they got him. And each person who called was spoken to with kindness, thoughtfulness, clarity. “No, dear, we’re not going to talk about dementia, now. We’re going to get your B-12 levels up, and you’ll be just fine. Don’t be frightened, this will work, you’ll see.” I could almost guess the age, the gender, the severity of illness, by the tone of his voice. And I wasn’t perturbed by the interruptions because I knew that he would take my calls, too.
In my work, if one of my clients is under a doctor’s care — a psychiatrist, a neurologist, whatever — I will, more often than not, get consent from that client to speak to the other caregivers involved. It simply makes sense to me, as one member of a team trying to help improve the quality of someone’s life, to communicate with the other people who presumably have the same goal. So many, many times since I’ve been on this long, strange medical trip, I have said to Jif, “I wish Dr. McC would talk to Gastroboy. . . This would be so much simpler if Dr. S. would just call Dr. McC . . . Apparently radiologists are like the Wizard of Oz, and NO ONE is allowed to approach them . . .”
So imagine my surprise when this bizarre Dr. B. says to me, “Do you have a good gastroenterologist? Would you like for me to talk to him?” I think he was trying to kill me right there, saying such a thing.
And if I had any doubts that he was trying to make me stroke out on the spot, do you know what he said to me as we were ready to say goodbye? He said, “Here is my email address. I don’t want you to ever be unable to reach me. You’ve been too sick for too long, and I know you must be frustrated.”
I think he’s an alien.
My friend told me that he has the reputation of being a “brilliant diagnostician.” I don’t know yet. He has a theory, and he’s started treating me for his theory. And he listened to my theory, and told me it makes sense, and gave me the test orders to check that out, too.
I don’t know if he’s going to diagnose me and/or cure me. I do know that for the first time in months, I left a doctor’s office feeling hopeful. Thank you, Dr. Bizarre. The world needs more docs as crazy as you.
“In everyone’s life, at some time, our inner fire goes out. It is then burst into flame by an encounter with another human being. We should all be thankful for those people who rekindle the inner spirit.” — Albert Schweitzer
This amazing shot was achieved by throwing Biscuit’s ring into LG’s ice cream truck, then laughing hysterically as he investigated all the ways a VBD might invade a child’s ice cream truck, all the while listening to LG scold both of us (because she had just gotten all the “inventory” inside arranged just so, and Biscuit was like a bull in a china shop (or a VBD in an ice cream truck)), and then yelling, “HEY, BISCUIT!” 16 times or until he looked out the window at me. You know, in case you would like to attempt this brilliant photographic effect at home.
I entertained myself by repeatedly tossing Biscuit’s things into the truck yesterday afternoon, much to LG’s and Biscuit’s vexation. I thought I only felt well enough to sit on the couch, but turns out I actually had enough energy to torment children and pets, and laugh about it. Then, don’t you know when Jif came home, he had the same idea. LG would scream, and Biscuit would go to great lengths — overturning the vehicle with his snout, diving through the window, whatever — to gain entry. Jif thought it was just as funny as I did. We are simple folk, easily amused.
I can’t look at this without being reminded of one of Jif’s childhood stories. I’ve confessed to my criminal past here, but most people think Jif is above reproach. I know some things on him, though. When he was five years old, he and an accomplice, his cousin, “Flipper,” stole the Jack ‘n Jill ice cream truck that stopped in their neighborhood. While the ice cream man was out on the sidewalk handing out the goodies and taking the kids’ coins, Jif jumped in the driver’s seat and put the truck in gear. Flipper hopped in and off they went down the hill, with Jif steering and Flipper ringing the bell, and the ice cream man plus half the neighborhood running behind them. No one was hurt (thank God), and the truck came to a stop when they reached the bottom of the hill, and the road headed upward again.
Masterful segue ahead, bridging Biscuit Friday and a “medical minute” . . .
My friend, Katy, cautioned me not to mention the PET scan to Biscuit, because he would want to get in on it, and she was right, he thinks everything’s all about him, especially things with the word “PET” associated . . . (not bad, eh?)
Here’s the deal. It is almost all good news. There was only one area that showed rapid cell activity, but there are other, normal, healthy reasons why that particular area would appear so. And unless I have reason to believe otherwise, I’m assuming those reasons. I will, of course, check it out further; already have a test scheduled for Monday to do so.
Frankly, I am surprised. I have felt so sick for so long, now, that I really did think the worst. Of course I am relieved. And I am frustrated beyond anything I could ever have imagined. I have increasingly distressing, debilitating symptoms, and to my knowledge, they’ve done darned near every test they can think of to do, and can find no cause. The doctors I’ve been seeing are frustrated, too; I can tell. They used to like me. Now, not so much. I have joined Elaine Benes on the “difficult patient” list, I fear.
I am not able to work very much. That distresses me, emotionally, professionally, financially. As for this hobby, I alternate between thinking I will just stop, because it’s one more thing that I’m not doing very well, and I don’t need the angst of that; and thinking that I will go nekkid and just spill how despairing I feel sometimes with this whole situation, or just list my symptoms and appeal to ANYONE to come up with an idea of what is going wrong here.
sigh. For now, I want to keep doing the Sunday thing, because I do love my small but faithful “congregation,” and I’ll just come on with something silly when I take a notion and have the energy. I really don’t want to go all medical all the time. But I really do count on your prayers and the other good stuff you send. I’ll let you know the very second I have some answers, or even some healing without answers. Next up, an appointment with an infectious disease specialist, and then with a rheumatologist.
I’ll never be able to say it enough: I thank you. My friends.
“If we imagine we have to put on our Sunday moods before we come near to God, we will never come near Him. We must come as we are.” — Oswald Chambers
I know a lot of you are praying for me. Please keep it up. I have had some conflicting results from recent tests. I’m having a fancy new test this week that I hope will offer some helpful information. As I understand it, the images produced from this scan “light up” any areas where there is cancer. This is one time I don’t want my little light to shine. I hope they will tell me that they see nothing at all. But if they do see something, I can actually get a treatment plan started, and that would be a good thing. Mostly, I hope that this test will give accurate results, that someone reads properly.
Thank you for sticking around, and for your prayers and healing energy. I wish I could show how thankful I am. I really am. 🙂