Breakfast burrito

My beautiful wife just made me a great second breakfast.    Yes, I eat like a hobbit; I typically have elevensis, too.  

Warm up burrito wrap (my wonderful wife likes it warmed up – me…I just eat them right out of the package).                                                      

 Add lettuce, chopped up boiled eggs, asparagus, olives, and avacado. Some times we add onions.  Salt and pepper, to taste.   Basically, you can add whatever doesn’t kill you.

Wrap it up and enjoy a great meal.

Posted in Diet, General Porphyria Discussion | Leave a comment

Safe – as long as I watch the protein

I make hamburgers and baked potatoes that are generally safe for me.  But, the other night felt pain afterwards and had to resort to using glucose.   It stopped the pain; but, the next day I was a little slow, because the pain disrupted my sleep.   While talking with my wonderful wife, I realized that I had too much meat in relation to the amount of potatoes.

We generally make a bunch of hamburgers and freeze them; that way, I can microwave one for a quick meal.    I do the same with the potatoes.   I know that a lot of people have issues with microwaves for health or culinary reasons; I agree completely. However, dealing with porphyria is so time consuming and all encompassing, that I take this kind of shortcut for my sanity.

And, I realize that there are many that feel that we red meats should be avoided.   I eat mostly fish and chicken; but, I need some variety.  

Hamburger meat – low fat, organic, grass fed (or best available)                  

Sweet onions

Chop up the onions and mix into the hamburger.  Garlic can be added too.  Add salt and pepper to taste.  Instead of chopping the onions and garlic, you can put it into a food processor.

Make into patties and place on cooking sheets with enough lip to hold water.   

Add a little water and bake at 425 for 5 minutes, turn and cook for 5 more minutes.  Adjust cook time according to taste and over behavior.

I use red potatoes; I feel better eating them than I do with yellow potatoes.  I cut out any bad spots and eyes, the microwave for ~3 minutes, turn over and zap for another 3 minutes.   Then I cut them up and salt.   You can season with whatever doesn’t hurt you.

I use whole wheat buns.  

For greens, I like to add steamed asparagus.   I snap the hard bottoms off before steaming.

All of the scraps from the onions, asparagus and potatoes go in the compost pile.


Posted in Attacks, Diet | 1 Comment

Chocolate Ice Cream

I must confess that I have a weakness for chocolate.  Most of the time I can get away with it…sort of.  Well, last night I had a bowl of chocolate ice cream after dinner, organic of course; it was not a good idea.    About an hour later, I was hungry and not feeling particularly well.  So, I ate some of my home made, porphyria safe, pizza.   Well, I had enough pain that I needed to use glucose.    

I guess the ice cream followed by pizza (with cheese) was not a good combination.

Unfortunately, it disrupted my sleep, too.   

Sometimes, it is really frustrating not being able to eat like a normal person.

Posted in Uncategorized | Leave a comment

Great Meal – at a cost.

My wonderful wife made a very delicious meal yesterday, with what we thought were safe ingredients.   I did not have a porphyria attack; but, it did bomb my system.  I got tired and sluggish, and, it was hard to think.  My eyes felt droopy.  I call it crashing; it happens periodically.   So, I have to be careful what I eat.

Here is the recipe.

Orange & yellow peppers, Vidalia onions, salt & pepper, organic dry garlic & onion seasonings (this may have been the culprit).  Stir fried it in a very little avacado oil.

Mixed with steamed rice and baked chicken.

This is the first time the organic dried garlic & onion seasoning has been used!  Arrgh!  Something so simple.

I am glad that I took the time to post this, because while were discussing the recipe, we realized what was the problem.

Anyway, a little glucose and a nap help me recover…at least on weekends.  During weekdays, glucose and get back to work.

Posted in Allergy, Attacks, General Porphyria Discussion, Uncategorized | Leave a comment

Resource page more than a blog.

Updated Jan 27, 2018 – I think of blogs as frequently updated journals.  This is not that kind of site.  I set this up as a resource for my family and for other porphyria sufferers.

But, it is not a cobweb.   I am notified of comments and I try to respond in a timely manner; that, of course, depends on health and schedule.

I hope this helps you deal with porphyria, diverticulitis or whatever ailment you are dealing with.  I have no doubt that such things as keeping a food log has universal benefit.

Be well, pray.  God loves you.

Posted in General Porphyria Discussion | 4 Comments

Coffee, coffee, coffee…well, not any more

I’ve known for a long time that coffee is not compatible with porphyria.  But, I really like coffee and was able to get away with it for a long time.   I’ve become so sensitive to it, that I had to quit.   It’s been 2 weeks now; and, I am feeling much better.  It really is an addiction.  One thing that I’ve found that helps is to replace it with hot green tea (organic, of course).   Having a cup of coffee with my wife, a friend, or business associate is an important routine for me.  I can still take part!

I should have quit earlier.  It was easy for me to justify, as I have had to give ups so many other things.

It could be worse.

Posted in Allergy, Diet, General Porphyria Discussion | 15 Comments

Sinus Infection – air filters and hydrogen peroxide to the rescue

One of my weaknesses is sinus infections.  I am allergic to many things and exposure causes my sinuses to be unhappy; then an infection sets in.

For a long time, I have been relying in saline spray (Ocean brand from Publix), hot steam (head over bowl, covered by towel) with eucalyptus essential oil, and hot tubs/showers.  This really reduces the need to get antibiotics…for me, at least.  I’ve talked to others with their own home remedies.  Avoidance of antibiotics is critical.  However, sometimes it becomes necessary.

** Note:  Eucalyptus oil may be a trigger for some people with porphyria.  It does not bother me; but, it may be bad for you.   Thanks to J.M. for the comment.  **

This year, the antibiotics have not been doing the trick.  During the summer, I went 5 weeks on 3 courses of 2 different antibiotics.  The doctor wanted to send me to a specialist to do more “aggressive” antibiotic therapies.   That is terrifying.  So, I had to try something different.  The local pharmacist suggested that I get an air filter; he uses one from Winix…so, that is what I went with.  In addition to that, I started adding hydrogen peroxide to the saline.  With these two things in play, my sinuses cleared up in 3 days!  I don’t just spray the saline in a mist; I lean my head back or bend over, like I am touching my toes, and spray liberally.  I had to experiment with the amount of peroxide to keep from causing bleeding.  It stings; but, it is not bad.

I’ve discussed this process with my hematologist and my wife discussed it with her doctor; they thought it was a good idea, if it works.  I doubt they will suggest it to anyone though; doctors seem to be too steeped in pharmacology and surgery.

As in all things, consulting a doctor is the smart thing to do; and, where government control is strong, it may be the legal thing to do.

Posted in Allergy, Doctors, General Porphyria Discussion | 3 Comments

My Responsibility

It is my responsibility to manage my porphyria.  This is not to take away from all of the support that I get from my beautiful wife; I don’t know how I would manage without her.  But, the bottom line is that it is up to me.  If I don’t eat enough of the right foods, avoid triggers, exercise, keep the air filters clean, etc. then all her help is in vain.

There is no excuse for giving up because it is too “hard” or “not fair”.   I would love to have a drink of Sweetwater IPA, some dark rum, or a great pinot noir; but, the then I would be really bogged down for a few days.  I would really like to quit work and concentrate on feeling better; but, then I would have to rely on handouts.

Anyone with porphyria has to make these choices.   Can they fight it or just give in and suffer the consequences…that is the question.  But, the consequences are not just on the person with porphyria; the resultant mess affects family members and friends, too.   It is heart rending watching a family member with porphyria not eat properly, get tattoos, use hair dye, etc…the resulting pain and suffering is mind numbing.

One foot in front of another.  One day at a time.  Life is much better when staying on top of this disease.

Posted in General Porphyria Discussion | 2 Comments


This is the way that I do it; but, you can remove the beef bone & chicken, if need be. Boiling the chicken on the bone and the beef bone draws needed nutrients from the marrow.   Many with porphyria believe this is beneficial in that a couple of the heme product steps occur in the marrow. Also, the OMD that I see is very much about adding the bones for everyone.

The amount of potatoes, carrots, and mushrooms can be varied to suit taste.

I make enough for several meals.

Red potatoes
Chicken breast, on the bone
Beef bone
Jalapeno (with care)
Organic vegetable broth

  • Place chicken and beef bone in pot
  • Cut potatoes to bite size & add to pot
  • Add celery
  • Add salt
  • Cover with vegetable broth
  • Bring to rapid boil and turn down to light boil. Boil for 40 minutes.
  • Add carrots, cut to bite size
  • Add mushrooms, cut to preferred size
  • Add Dill
  • Boil for 20 minutes.
  • Turn off heat & remove pot from burner.
  • Remove chicken, to prevent over cooking.
  • After chicken cools, shred and mix into soup.
  • Refrigerate
Posted in Diet | 1 Comment


Warning – be careful with ingredients.  Dairy products can be a problem (I can manage in small amounts); too much avocado oil can be a problem, too.

Baby Bel mushrooms
Tomato sauce – I’ve stopped using sauce.
Green onions
Sargento sharp cheddar (ultra-thin) – change to suit taste
Fresh oregano
2 flour tortillas
Avocado oil
Possibly garlic
Possibly black olives

  • Toppings
    • Slice up mushrooms, onions & possibly black olives to size preference.
    • Mix ups toppings
    • Add small amount of avocado oil, while mixing.
  • Sauce
    • add tomato sauce, cut up fresh oregano, salt, and pepper
    • mix
  • Flour tortillas
    • If using a stone or skillet, lightly brush avocado oil on surface.
    • Place one flour tortilla down and lightly brush avocado oil, then lay the second tortilla on top of this.  The oil will hold the two together.
  • Build
    • Apply sauce to tortillas to taste
    • Apply thin layer of cheese
    • Apply toppings to taste
  • Bake on convection @ 450° for 25 minutes on stone, 22 minutes on grate.  Cook times will vary depending on oven.
Posted in Diet | Leave a comment