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.
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.
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.
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.
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.
Chicken breast, on the 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.
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
Sargento sharp cheddar (ultra-thin) – change to suit taste
2 flour tortillas
Possibly black olives
- Slice up mushrooms, onions & possibly black olives to size preference.
- Mix ups toppings
- Add small amount of avocado oil, while mixing.
- add tomato sauce, cut up fresh oregano, salt, and pepper
- 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.
- 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.
This is a wonderful time of year. Time to be thankful for all of our blessings and for the birth of our Lord. Now, to successfully avoid the chocolate & eggnog.
Every morning I wake up feeling like I have a hangover…and, I don’t drink! Eventually, that eases up & sometimes goes away. Those are good days. Sometimes, I think that I might as well drink when I want, since I already have the hangovers. Of course, that is silliness. That would be devastating. I will have a beer every once in a blue moon; but, then it affects me for a few days. While on that topic, I’ve come to realize that the beers that are the easiest on my system are light pilsners. I do prefer a strong IPA; but, they are the hardest on me. This is a shame as the best IPA’s are made by Sweetwater & they are just down the road.
So, what do you do for a hangover? First, drink plenty of water. Good healthy breakfast. Take a walk. Time. Repeat.
How to prevent a hangover? Don’t drink too much. Don’t have porphyria.
The Snickers commercials nailed it. You are not yourself when you’re hungry…especially with porphyria. The effect is many times as strong because the glucose starvation is deeper & then you throw in those nasty porphyrins.
A high school friend lost his daughter, Kelly, to anorexia; he and his wife started a foundation called Something for Kelly to fight this problem.
Something for Kelly Foundation was nominated by Cunningham Fine Jewelry to receive a $10k grant from #JewelersforChildren. To receive the grant, they have to be among the top vote receivers. Voting is open 10/6/2014 – 10/19/2014
If you would like to help, go to https://www.facebook.com/JewelersforChildren/app_303561899745219 It is a bit confusing. Click on Something for Kelly, then go to the bottom of the page, enter your email address & click submit.
[update 10/10/2014] Looks like S for K is in second place, today; but, it is a distant second place. You can vote daily. I’ve voted every day that this has been open.
[update 10/12/2014] Something for Kelly is now in a heated battle for 4th place. Still voting.
Wow! How to handle nausea, when it is absolutely mandatory to eat or have a porphyria attack. Everything that I write about is based upon my experiences & research related to those experiences. I have no problem with nausea and cannot even fathom the complications that ensue…
“I am trying to determine my triggers, but I still get cant always avoid them. Basically, my question is if anyone else has issues with severe vomiting. I vomit frequently and I stay hydrated when I can keep fluids down, but when I even vomit from sucking on a wet rag (attempt to wet mouth because of dryness and also it gets tiny amounts of water in me, a sort of trick I use) I then have to worry about replacing electrolytes. I get consumed with chills, to a terrifying degree due to the fact that I cannot sweat. When I went to the ER recently, they gave me IV fluids and I poured sweat right away. and it felt so good! I know that sports drinks are dangerous but simply water is not enough. How do we keep our fluids correct when you vomit almost daily? I am writing this so fast because I am at a public computer so sorry for grammatical errors ! Thanks yall!”
This was posted on the “Diet” page & it is the 35th comment; so, few people will make it that far.