Rooting for Venus

I know that many with autoimmune disease have been following Venus Williams since her Sjogren's diagnosis last summer.   I certainly have and she has really helped bring a voice to what it is like to live and learn to live with AI disease.  There was a recent interview with Venus leading up to the US Open that I wanted to share.

Venus is shutting down all speculation about retirement from singles and had recently made it to the semifinals at the Western and Southern Open in Cincinnati last week and won an Olympic Gold in doubles with Serena in London earlier this month. Williams shared that she is "doing a lot better than this time last year...So much better than a couple of months ago, as well.  I am learning to deal with everything a lot better."

The article continues that "in her first few tournaments after the seven-month layoff she would panic if she woke up feeling stiff or tired.  A loss was inevitable.  Now, she's starting to figure out how to hang in there even on the bad days and still get a win.  She has changed her diet...and is letting her body dictate her activity instead of always pushing through."

While I am very very far from a world class athlete, this kind of evolution and adjustment is something that I can certainly relate to.  Learning not to feel defeated when I wake up not feeling well and replanning my day accordingly without letting frustration get the best of me can be a challenge.  Becoming flexible about my schedule because each day with AI disease can be a bit of a surprise -- sometimes good and other times not so good.  This need for flexibility does not come naturally to me, but it is something that I am getting better at.   I have also learned, the hard way, the lesson of not pushing through when my body is begging me or even subtlety telling me to stop.  The end result is never good -- and usually if I just stop, rest, and take a break, I will probably be able to get back to what I need to do later that day or hopefully the next day.

Thanks for sharing Venus, and I will certainly be watching and rooting for you in the Open.






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New Food Allergy Reveal - King Corn Causes Concerns

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Wow, just when a girl thinks she has her health problems heading in the right direction, something new always seems to come up.

I wrote a few weeks back about being tested for new food allergies. I was having pretty frequent swelling  of my lips, throat, and cheeks when I ate and I couldn't pin point what was causing these frequent and acute reactions. The test came back and (drum roll please) I am highly allergic to corn.  I had never been before, but now my allergic level was off the charts.  At first when my allergist told me, it didn't seem like anything that would be too hard to manage.  I thought corn on the cob and high fructose corn syrup.  But then as I began to understand the ingredients that I would have to stay away from it became a whole new ordeal. I haven't written about the allergy until now because it has been so difficult to manage and is taking up so much of my time.  It is much harder than my other food allergies and I am overwhelmed.

One of the main challenges with having a corn allergy is that corn is not considered a top eight allergen so it is not required to be listed on the allergy warnng label for a product or even identified as corn in ingredient lists.  This means that ingredients such as food starch, vanilla, vegetable oil, carmel and carmel color, maltodextrin, cellulose, vegtable glycerin, xanthum gum, and baking powder are often derived from corn, but corn is nowhere to be found on the label.  The list of ingredients that can contain corn is much more extensive and can be found here if you want to take a look.

Ok, so you would think once I have a list of ingredients, I'd be all set....not so fast.  I have found out this is only part of my problem.  Who would of thought that eggs are often washed in corn starch and that the coating for paper plates are often derived from corn?  A lot of the plant based environmentally friendly packaging for foods is often corn based as well and so is the wax coating on fruits and vegetables. These are being used more and more frequently and are hard to identify.  I'm now in a place where I have allergic reactions to foods that I am not allergic to because of how it is packaged or if corn is somehow used in its processing.  I had an allergic reaction to rice cakes and later learned that the rice cakes are made on the same exact equipment as corn cakes.  Cynics would say the strength of the corn lobby has something to do with it not being a recognized allergy by the FDA, but all I know is that the world I inhabit is not designed for people with corn allergies.

On to medicines: They are a whole other area of difficulty since they also contain corn as binders and fillers.  I had an allergic reaction to plaquenil (a medicine that I take for autoimmune diesease) and after looking at the indredients found it contained corn starch.  The NIH Pill Box Site has been a great resource so I can look up all the drug manufacturors that make a particular drug and their ingredients.  But then I still have to call each one individually to see if there is hidden corn in the ingredients because it is often listed as food startch and cellulose but does not identify it is dervived from corn or another source.  Luckily, there is one brand of plaquenil made without any corn derivatives.  For medicines that are not manufactured without corn like many antibiotics, I have had to go to a compounding pharmacy to have the drugs made. The suspension syrup used to make most drugs also contains corn so the pharmacist has been making some of my other medications with the chemical form of the medication and then distilled water.

I also forgot to mention everyday beauty products like lip balm and shampoo often contain corn listed as some other chemical compound too.  I have been more focused right now on finding foods that I can eat and making sure that I can take my medicines.  I am spending lots of time on the phone calling manufacturers to find out if there is corn in specific foods and medications.  I am making use of my local farmer's market and hope that by talking to the individual farmer's I can find out directly if corn is used in making their food.  I have been cooking all my own meals, though they are rather unexciting, and using websites created by other's with a corn allergies as a resources.  But figuring out this whole corn allergy is extremely time consuming and I have not yet had a straight week since being diagnosed, where I have not had an allergic reaction to something.

I keep joking with my husband that we might have to move to another country where the corn industry and the use of corn products is less pervasive.  If only, corn was listed as a top allergen, it would be a bit easier. I would love to hear any advice from others who also have a corn allergy.

Calling My Doctor's Office: It Shouldn't Be This Hard

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I had an experience with my internist's office recently that just made my blood boil--and I know that many other patients have had similar interactions with their physician's offices.  My doctor had nothing to do with the interaction and it was a phone call with one of her office administrators that I am writing about.  It was a clear reminder why healthcare can be so unfriendly to patients and why for people with chronic illness constant interaction with the medical system is a stress on its own.

I called my doctor's office to deal with a timely and serious medication issue and to send recent abnormal test results.  I was doing what I was supposed to do--responsibly addressing and coordinating my own medical care between doctors' offices.  The story in brief is that the administrator on the phone repeatedly scolded me for calling the phone number that I did.  She kept repeating, "do not ever call on this number it is for emergencies and for physicians."  I explained that this is the phone number that my internist has specifically given me to call.  (Not to mention that my internist has also given me her cell phone number and direct email and there is good reason for this. She has told me I am one of her most complicated and sickest patients.)

Despite my best efforts to relay the instructions my doctor had given me, it was no use--the scolding just continued.  When I was finally able to relay the reason for my call, which was nearly impossible because the administrator was trying to get me off the phone as quickly as she could, she again repeated that I was never to call this number again. I felt as if I was being treated like a child who is told she had misbehaved.  Not surprisingly, the administrator did not help me with either of the two issues I was calling about.

The reason I see this internist is because she takes my health problems seriously, is responsive and compassionate, and encourages me to be in touch.  But this administrator clearly finds my interaction and communication with the physician bothersome.  I wish that I was not sick and did not require ongoing medical care.

The last thing most people want to do is be involved with a physician's office.  The people who work there should serve as a kind and a effective conduit between patient and doctor, making what is often an unpleasant experience better.  While this is not always the case, I have found that some administrators in physicians' offices seem to relish serving as a barrier between patients and doctors. They are officious as opposed to helping patients. 

I am sure this administrator's work is not always pleasant since it requires dealing with anxious and upset patients at times. But that is the nature of the job.  A helpful and friendly staff member behind the front desk or on the phone at a physician's office can make a huge difference for patients and their families.

As a patient, our best recourse is to file a complaint when we are treated poorly and if the situation is bad enough to leave the doctor's practice.  The next time I see my internist, I will tell her about my interaction with this staff member.  Doctors are in charge of their offices and it is their responsibility to make sure those who work for them do their job well.  In my opinion, there is a real problem in the culture of healthcare when patients, the consumers of healthcare and those who are sick, are treated as the enemy.  

New Find: Aveeno Baby Mineral Block

I generally don't do product reviews (and rest assured none of them are sponsored) but when I find something that's particularly helpful to me for my autoimmune related issues I do try to share it.

Sun protection is very important for those of us with autoimmune disease.  Many autoimmune conditions are sun sensitive such as lupus and Sjogren's and getting too much sun can cause or make flares worse.  I, like many others with autoimmune disease take medications which can further increase sun senstivity such as plaquenil and steroids.  While I definitely love the summer and warm weather (my joints do too), it is a balancing act to enjoy the outdoors without getting too much sun and hurting my health.

One of the problems that I have had is finding a sunblock for my face that does not cause me to either break out in unflattering pimples or to get a rash from one of its ingredients.  Of course, it also has to do its job of protecting me from the sun.  Over the last few months, I have tried many and have finally found one that seems to do the trick for my face.  It is Aveeno Baby sunblock stick SPF 50+.  As the name suggests, it is actually made for babies over six months of age, which might be part of the reason it does not bother my sensitive skin!

The Aveeno is technically a mineral block or sunblock as opposed to a sunscreen and I have recently learned that there is a difference.  A mineral block or sunblock sits on the surface of the skin and is not chemical  based.  It usually contains zinc oxide and/or titanium dioxide. These are the active ingredients in the Aveeno Baby sunblock stick.  Generally, sunblocks are less likely to irritate sensitive skin.  Sunscreens on the other hand are chemical based and have to be absorbed into the skin in order to effectively block UVA and UVB rays.  The downside of sunblocks or mineral blocks like the Aveeno is that they do not always easily rub in.  The Aveeno does leave a white film and I do have to use a little elbow grease to blend it in so that it can't be seen.

The stick is compact, easily transportable, and fits in a purse or a pocket.  Because it is not a liquid, there is little risk of it spilling all over your things.  I carry it in my purse and reapply every couple of hours.

Here's a link to the site if you want more information:  http://www.aveeno.com/baby-care/np/lotion/baby/spf50









*I have no relationship with any of the companies whose products are mentioned in this post*