Sunday, August 24, 2008

I (heart) my doctor

I dread finding a new doctor. Not because there is a lack of good or even great doctors out there, but because I hate the moment when I have to explain that every time she (or he) wants me to try a new medicine I have to check the ingredients and possibly call the company. If you are a doctor, stop rolling your eyes now! No, I don't have a tinfoil hat and the aliens are not talking to me through my fillings, I am not one of those people. I just don't want to get sicker while I am trying to get well, I have a corn allergy and corn is a common filler ingredient in prescription and over-the-counter medications.

This is why I (heart) my current doctor, her sister has a true corn allergy too. She is fine prescribing me the same safe antibiotic each time I need one (about 1x/year), she wrote me a script for compounded Tylenol without a question, and she believes me when I say, "No, I can't take that." She loves that I check the medication options against a list on my palm pilot and that I research what might work for me and what is not safe. She is my ideal doctor and I got very lucky in finding her. I never imagined finding the perfect doctor for me and I still can not believe how great she is -- on top of having a sister with a corn allergy she is a talented, compassionate doctor and funny too.

I've unfortunately dealt with other doctors, usually briefly, who either would not listen when I explained that I could not take a medication due to a corn allergy, could not understand that I was allergic to a common filler in a medicine, or would not believe that I had a question about the inactive ingredients in what they were prescribing. Let me be clear, I have no problem with their choice of medicine, I go to doctors because I need help from experts. I respect the fact that they are very busy, very hard working professionals with years of study, practice, and experience. I just know that I have been diagnosed with I corn allergy, that corn and corn derived ingredients make me very sick and can make my throat swell shut. I don't expect anyone who is not an allergist with their own corn allergy patients to know all the ins and outs of medication issues. I used to try to explain the corn-in-medicine issue to the few doctors who didn't believe me, but after dealing with an ER doctor who got really ugly about my lack of medical expertise, I have come up with new, unpleasant tactic for those who don't want to listen. I will be a HUGE jerk about it. Here is what I imagine myself doing:

I will smile sweetly, open my eyes wide and say, "OK if I understand correctly, you are saying there is no possibility of a single corn protein being in the medical grade corn starch in this medicine and no chance of it causing an anaphylactic reaction. I believe you, since you are the doctor. Here are my Epi-pens. Here is my Benadryl. I think we may need some assistance and witnesses for this--I'm going to take the medicine in front of you but first I will need you to accept full liability for any allergic reaction, which you say can't happen." Since I live in America, which is a frivolous lawsuit happy country, this is not a nice thing to say, and I would never ever even think of thinking it around anyone who is being rational. Yep, I'm going to be a horrible jerk, but he started it. (I hope that the ER doc was having a bad day and is not really that awful to everyone.)

I really (heart) my current doctor. And I (heart) my previous family doctor, from the other side of the country too; Dr. M. was my doc when we discovered the allergy. He is amazing in a whole different kind of kind of way, as things kept getting cut out of my life while I was working with my first allergist, Dr M. was never troubled by any weird request I threw at him and was happy to give me all the information I needed to figure out if I could take a medicine (I can't imagine anyone else really wanted the inserts from the samples). He and his staff were so encouraging, they would fill me in on the latest info on food allergy research and laugh with me when I told them about my latest stupid mistake.

His PA gave me some of the best advice I've ever received on confusing labels. I saw her for lingering symptoms (fat tongue x 3days) from a reaction to a vitamin that claimed to be soy, wheat, egg, corn and a bunch of other stuff free. It obviously wasn't corn free. She tried very hard to keep a straight face while listening to my fat tongue impaired explanation and finally said, "If you don't know precisely what the heck is in the darn thing, don't put it in your mouth." Words to live by.

After a martial arts injury resulted in a pinched nerve (T-12/L-1) that presented oddly as extreme lower right quadrant pain, Dr M. sent me for a host of uncomfortable and unpleasant tests. From this we discovered my allergy to CT-Dye and just how much corn is in all of the stuff you have to swallow to have your insides looked at and how much corn in the things that mask the flavor of the nasty stuff you have to swallow. Unflavored barium shake anyone? It has been years, but just thinking about that shake still gives me dry heaves. Dr. M. and his amazing staff managed to get all the tests ordered minus the corn ingredients -- that had to be a minor miracle and a major headache.

I really (heart) my doctors. The thing that makes both of them stand out is that they are fine with my coming to their office having researched possible diagnoses and treatments for what is bothering me. I don't do this for fun, I don't know if I am even in the ballpark with what I have come up with, but I do this to see what medications they may want to use so I can check out the inactive ingredients beforehand and come up with a set of safe medications. I am never trying to be difficult, I am trying to be safe and to not throw off their office schedule with requests for extra information. So many people on the Avoiding Corn Forum have not yet found a family doctor who understands their corn allergy, the problems it creates and the steps we take to stay healthy. Every time I read a post about someone dealing with a doctor who can't understand how we react to common medication, I wish the writer could just skip all the frustration and go to my amazing doctor.

I used to have a hard time standing up for myself, but this allergy put an end to that. I hope I will never have to use the jerk speech, I don't like being a difficult/weird/over-informed patient, having to check my medications, or asking the pharmacist to call the doctor and ask for a different medication because they checked and found corn. If I say no to a medicine, it certainly is not because I am second guessing my doctor's choice of medication to treat a particular illness, it is just because I can't take the second dose once my throat has swollen shut. I really (heart) my doctors because they understand and because they would think this post is funny. Maybe I'll send it to them on Valentine's Day.

7 comments:

Karen said...

I take my allergic child to a dentist in the next city who is allergy aware. Good thing he knew what floride treatments had milk protein in them!

I have gone to the doctor, with the name of the drug I wanted that was allergyn free.

Christine said...

Hi Karen,
I had no idea that fluoride treatments had milk proteins in them! Did your dentist tell you the name of the ones without? My cousin's baby has a severe dairy allergy and I've been looking for info for him.(I sent him to your blog!)

I'm glad to hear that you have had good experiences! :)

Von said...

Great post. Wish all doctors had corn allergic sisters! :)

Finding ones that accept that you have a corn allergy is difficult. Finding one that accepts the depth of what constitutes a corn allergy, is nearly impossible.

I'm glad to hear you've been lucky with doctors!

Sharon said...

I haven't seen an MD in 5 years for some of the reasons you mention in your blog, most notably I was dead tired of the lack of listening, lack of respect for the patient's knowledge of anything, and their constant attempts to damage my health.

I've used complementary and alternative medical practitioners exclusively in the past few years. I don't seem to have the same problems with any of them. However, my BP got to the point where I really need to be on meds for it, and my chiropractor said it was time to bite the bullet and see an MD. When your chiropractor says you need to be on BP meds, you're an idiot not to listen, and at my age (nearly 50) it was time for a checkup anyway, so a week and a half ago that's what I did.

Sure enough, the MD would not listen for a minute when I said the we needed to research whether the BP medicine was safe for someone with corn allery. I offered to do all research -- hey, I know what I'm looking for, he's not at all trained in this matter, and I realize that time is money. I provided his staff with a list of substances that are corn-based and therefore not safe.

The nurse called back and said there were no corn-free meds so I would "just have to take the Zestril." I asked her with as much sugary sweetness as possible since I was allergic to penicillin as well would she suggest I "just try" that as well?

I gave them all the info, in print, about options besides the usual pharmacy. It wasn't until some serious haggling on the phone that they would even call the compound pharmacy. Then they called me back, said they'd spoken to the pharmacist, and "there was nothing he could do and I would just have to try the Zestril."

Sorry, but I would go to the nearby Tibetan herbalist before I will knowingly poison myself. And I know that compound pharmacists can mix up virtually anything.

I finally went myself to consult another compound pharmacist and sure enough, they knew exactly what I was talking about, instructed me in what to provide by way of a prescription. They typically use lactose as a filler when compounding, but since I have dairy allergy as well, we agreed that I would provide them with tapioca flour. As of this writing, we're well underway getting a BP medicine that will be safe for me.

I live in abject fear of ending up in an ER without a family member or knowledgable friend to guard my back and DEMAND to read the ingredients of everything before they put it into me. I've been way too involved in hospitals and their operations to believe they will know enough to protect me. They are used to certain orders, and they do what they do. They are good at avoid drug reactions, but are amazingly ignorant of food allergies.

When dealing with Western medicine, my motto is "Trust No One."

Fortunately, I have a dentist who is excellent and a good listener, and we have had no problems with him at all.

Needless to say, once I get my BP managed I'll be out searching for another MD. But I'm not at all sanguine about the possibility of finding someone who is on my insurance list and who will actually listen.

I know one MD who will definitely listen, but he is not on anyone's insurance list and never well be. If all I need is the odd visit for BP monitoring and a little bloodwork, it may be worth it for me to pay the entire bill just to avoid having my MD put me in the hospital...where they will not doubt poison me further if I don't have my usual "guard dogs" handy.

I really don't understand why MDs do not understand that we who live with corn allergy are more up on the subject than they are. We've had life training in it -- they haven't been trained. I hardly blame MDs for not knowing. I only blame them for not listening. The fact that most with corn allergy are women doesn't help, because you know for so many MDs, even these days, women's health problems are more a result of hypochondria and hysteria than any real physical issue.

Sorry for the long rant, but I have been fed up for years and am wondering when the Western medical profession is going to wake up and realize that dialogue with patients is occasionally necessary and they no, they are not little demigods after all. Knowledgeable -- yes, of course. Omniscient? Hardly.

Christine said...

Hi Von,
Dealing with my allergy was such a learning experience for my ALLERGIST, he never had a patient with a true corn allergy before (30+ years), I sure I can't expect a GP or any other medical professional to know the ins and outs of what I can have.

He had patients with corn sensitivities and ones that much were less reactive, but when I started reacting to derivatives like citric acid, we were both lost (I thought citric acid was from citrus)! If I had not found the forum and the corn list we would still be looking for other allergies to explain what was going on with me. :)

I just wish all doctors could be *ROCK STAR* doctors like mine. I've heard a lot of horror stories and encountered a few people who need some serious help with their listening skills.

The good and the truly great are out there!
-c

Christine said...

Hi Sharon,
Thanks for sharing your story and (((hugs)))! I'm glad you stood up for yourself and I hope you are having success getting your BP under control.

I've tried just about everything I can find that sounds reasonable to me, including complementary and alternative practitioners. Some have been willing to listen and some have been utterly unwilling believe me when I tell then I can't have something! I was shocked since I had expectations of greater flexibility and allergy awareness from the complementary/alternative folks.

Dr. M sent me to a great chiropractor to help me with pinched nerve, she was able to relieve the lingering pain and get me off the pain meds. Wonderful!

I feel sorry for all the medical professionals who are forced to rush through time with their patients because the HMOs and insurance companies are pushing them to see more people in less time. I feel angry when I can't get someone to listen to the basic information about what is safe for me. And I feel scared for all of the allergic people who are trying to get someone to listen to their medication needs. None of us are in a good situation and this is not safe. We need some corn free tape to go over our mouths and IV sites that says "Check ingredients!" :)

Stay safe!
-c

Jennifer said...

Sharon,
You may want to try an osteopath on your insurance list (they have D.O. after their name, rather than M.D.). Now, I know that of all the people with a certain degree, there are bound to be a few morons who refuse to listen. But the osteopathic training has more information on allergies and emphasizes treating the whole person rather than just the injury/illness. So you may have better luck getting them to listen to you.

I am only corn sensitive, but as I eliminate things, I am beginning to realize that the vertigo that won't go away must be caused by corn in something I haven't given up yet, like my standard medications (I've also got fibromyalgia, so I take a handful of pills every day).

I wish you all the very best, because I can't imagine being more reactive than I am.