Awake to pain…glucose…relief…for a bit, darn.

1:00 sound asleep, then ouch!  My chest hurts very bad.  Roll over, grab some glucose tablets, as the first one dissolves, the pain fades.  Relief.  Chew a few more, to be sure.  Lay back down; but, before sleep returns, the pain is back.  I don’t need this; I have to work in the morning.  So, to the kitchen to mix up some powdered glucose & water and take some Donnatal.

Well, now I am awake.  So, read the Bible a bit (Book of Jasher, actually…but, it is specifically called out Joshua & 2 Samuel.  Wonder if there is an accurate version out there…found many errors / anachronisms).   The second dosing of glucose gave my body the energy to fight the porphyria attack & the Donnatal gave me the pain killers in case the pain came back.

The next morning I did not feel any more porphyric than normal (and, that is a complete different discussion)…just a little tired.

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Fever

Back in June, I was running a little fever when I went to bed.   I awoke shivering so bad that I could not open my mouth.  Walking to the bathroom was almost not possible.   I had to use an electric blanket set to 8 out of 10 to stop shivering.   When I woke then next morning, I still had a fever; but, I was not shivering.

This gets old, constantly fighting infections and viruses.

Posted in General Porphyria Discussion | 3 Comments

Parabens

Here is something that is of concern to everyone, not just us with porphyria.  A friend attributes her breast cancer to parabens, as parabens were found in the tumors.   Actually, that is how I became aware of these substances.   They are used as preservatives in cosmetics and pharmaceuticals; apparently, they are very good preservatives.  They also mimic estrogen; and, we all know how hormones can affect porphyria.

During the conversation about parabens, the people in the room informed me about an app, for the iPhone – Skin Deep.  This is very useful; you scan the bar code on a product, that you use or are considering, and, it tells you about cancer, developmental/reprotoxicity, and allergy risks.  It ranks the risk & lists the offending ingredients.  This has led me to change shampoo & toothpaste.

Here is the internet site: http://www.ewg.org/skindeep/

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Sulfites

Something else to deal with.   It was pointed out to me, by another in the porphyria club, that, not only are sulfites bad for us, they accumulate, too.  So, I started looking for information on sulfites; and, I found this great site:  http://holdthesulfites.com/

This site helped me understand sulfites & how to identify offending foods / drugs.  This site does not take porphyria concerns into account; it is solely about sulfites.   It seems that there are folks who can reach porphyria levels of catastrophic system failure, with sulfite allergies.  My heart goes out to them.

The page, on the site, that I refer to is “OK, You Can’t Eat Everything”; this page lists foods with naturally occurring sulfites, foods with added sulfites, and words to look for in the ingredients lists: http://holdthesulfites.com/ok-you-cant-eat-everything/

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Air Travel & Porphyria

There are times when you have to be on the road & you just can’t drive.  That adds a whole new level of complexity; this is especially true, when it is a business trip & you have little control over time & location.

Fortunately, the TSA folks have no heartburn about carrying your own sandwiches.  So, I carried many sandwiches, apples, bananas, and York Peppermint Patties…and, plenty of glucose tablets.  Once through security, my first stop is for a water bottle.  Of course, I ate the sandwiches with turkey in the first couple hours of the trip.  The ones with sunflower seed butter & honey will last a couple days.  As soon as possible, after landing, I found a store to pick up some more food supplies and water bottles.

I am blessed, in that, the people that I work with understand a bit about my dietary concerns.  They don’t understand porphyria; but, that is not real important.  It is refreshing when my boss says “doesn’t that have too much protein?”.   It does help that, even when I am not officially working, that I have my computer / phone with me & take care of customer’s & manufacturer’s needs.   After the days events, we would walk around the city & took time before and after business to explore the various cities we were in.  He has a wrist device that monitors the number of steps taken in a day; we averaged about 6 miles a day, walking.  Taking the steps, instead of the elevator, helped quite a bit; however, when we were on the 25th floor, we skipped that.

Anyway, three major trips and no significant porphyria attacks nor any diverticulitis problems!   Donnatal was needed about 3 times; but, that was for fairly minor pain.   I did go through about 150-200 glucose tablets, though.

Back home, with my loving wife.  I haven’t put the time into the veggies, like I would like; but, they are still alive & producing.  It is nice that it has been relatively cool, with plenty of rain.   Now, hopefully, there will be sunny days…we don’t need another rainy summer, like last year.

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Visit to Washington, D.C.

Road Trip!

Of course, the cooler was packed with plenty of safe food for the road – smoked turkey, soft taco wraps (with a minimum of ingredients), and my home grown lettuce for sandwiches; sunflower butter (like peanut butter) from Trader Joe’s, honey, and cinnamon bread for a “change of pace” sandwich; apples, carrots, sweet peppers, Pringles fat free potato chips, and York Peppermint Patties for dessert.  The Pringles is probably a bad idea; but, I can eat a few with no problems.

We stayed in a hotel with a small kitchen.  That way we could heat up some Bird’s Eye Steamfresh roasted red potatoes & asparagus.  The potatoes are heating in the microwave.  They have some kind of garlic sauce.  It may bother some folks with porphyria; but, it works great with my system.  It even settles an upset / acid stomach…for me, anyway.  After looking over the ingredients, I am really surprised that it does not cause me problems.

We stayed in Alexandria & took the Metro into D.C. to see the sites.   Alexandria is a beautiful little city & is safe to walk at night; and, Whole Foods was just around the corner!.  Our favorite D.C. location was the Smithsonian aerospace museum.   There are actually two locations for this museum; near Dulles Airport, there is a very large facility to display the aircraft that would not fit in the D.C. location.   Another site to not miss is Arlington National Cemetery.

A guilty pleasure, that I paid for, was pizza and beer at Pizzeria Paradiso.  They have glutten free crusts & can make it with no cornmeal (diverticulitis issues) and you can choose what ever topping.  The ambiance was great.  And, the walk back to the hotel was over a mile; so, I could walk off some of the toxins.  Still, when back at the hotel, I had to use a lot of glucose powder.  And, the next morning, I was slow moving and groggy.  But, it was well worth it.  It is amazing how one or two beers is such a drain on my body.

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Food on the Road

The safest place for me to eat is at home, where I have complete control of the food.  Eating at a restaurant is an act of faith.   Some restaurants put so much crap on their salads, to keep them fresh, that it is better to eat french fries.  So, when I have to eat at restaurants, on business, I have to be very careful…and, keep track of what is safest at whichever restaurant we are visiting.  At Italian restaurants, I tend to eat plain pasta…though I must say it is tough to live vicariously through the other diners.

Generally, I make several smoked turkey sandwiches to take with me, when I head out.  The sandwiches are made with flour tortillas that have the least amount of ingredients possible, Boar’s Head smoked turkey (Black Forest), and lettuce and/or chopped peppers / onions.  In season, the lettuce comes from my garden.  For dessert, I carry York Peppermint Patties.

If going some place overnight, we sometimes take soup.  That only works if the hotel has a refrigerator and microwave.  Sometimes, we’ll boil potatoes & carrots, to take with us.

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pH Curiosity

One of the results from a recent physical exam was that I saw my urine pH was high.  Normal is 4.5 to 8.0, preferably around 7.4; mine was 8.5.  Well, this concerned me; is this another problem or just a side benefit of porphyria.  My hematologist said it is not a problem.

However, I bought some pH strips & have started researching, on my own.  The sample size is small, as this is day 4; but, this is what I have found so far:  (1) if it starts out at 8.5, then by the next 1 or 2 flows, it is back around 7-7.5.  (2) If I eat a sandwich in the middle of the night, my morning pH is around 7.0.   Again, the sample size is very small; two nights with a sandwich in the wee hours of the morning & two without.

I am going to try other things, too…what happens if I take a hot tub (sweat it out) the night before, what I make dietary changes, what about chewing glucose instead of eating?

I probably won’t come up with something that eases the porphyria problems.  But, you never know….

Update:  After a few more days, it is becoming obvious that the pH goes more alkaline, the longer it is since I’ve eaten.   The urine sample for my physical was provided in the morning, with no food after midnight…say eight hours with no food.  No wonder the pH was 8.5.

So, what did I learn?   Actually, not much.  But, it was interesting.

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Known Triggers & Known Good

I use extreme caution using these terms.  For instance, in my family, cucumbers are a know trigger; however, many porphyria sufferers enjoy cucumbers with no adverse
affects.  On the other hand bananas are “known good”, in my family; while many in the porphyria club cannot eat bananas. Please be aware that what I write on this is what I see and hear about…that is why the title of the blog is My Porphyria.  I do try to call attention to foods that bother others and not me; but, I cannot cover everything for everyone.  Please be careful with all suggestions on this blog and every blog.

This goes well beyond food; the medical community has lists of safe and not safe drugs that are nothing more than guidelines & expectations.  For instance, phenobarbital is a “known trigger” for porphyria; but, I have been taking it for over 20 years in the form of Donnatal (belladonna + phenobarbital).  My prescriptions started when I did not know that I had porphyria; my diagnosis was irritable bowel.  Before I added glucose and magnesium, Donnatal was my only method of addressing attacks…and, it worked (and still works) wonderfully.  Additionally, when I recently had carpal tunnel surgery, all the doctors (hematologist, neurologist, surgeon,  anesthesiologist) & nurses involved researched porphyria & had numerous conversations with me.  There was so much prep that doctors & nurses not involved in the procedure came over and talked to me about porphyria.  Even though they meticulously used “known safe” drugs, I had a massive attack.

“Known triggers” and “known safe” are as common as unicorns.  When you hear these terms, please consider looking at other sources of information.  However, consider anything they say is a “known trigger” as dangerous to you.  If you see me using
those terms, please point it out & I will make appropriate corrections.

While on this subject, I use extreme caution choosing foods & putting together posts to this blog; the consequences of an error are extreme, as we are all aware.  If I make an error, please forgive me and give me a shout out.

Posted in Attacks, Diet, General Porphyria Discussion | 6 Comments

Porphyria on TV

During the first season of the TV medical drama “House”, there was an episode in which the main patient ended up having AIP.  That was exciting & good news, to us.  Of course, I figured it out well before the end of the show; I would imagine that is the case with many other porphyria sufferers watching.   Anyway, while looking around the web to update my knowledge of what is out there, for us, I found this “House” wiki:  http://house.wikia.com/wiki/Porphyria  that has a lot of good information.

It also refers to other programs that mention or highlight porphyria.   The only other one that I was familiar with was on “Castle”, as I don’t watch the other programs.

We are convinced that “House” and “Scrubs” has helped gain visibility into this disease, in that we could not find any doctors with porphyria awareness until after “House” started using it.

 

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