Health Update - Denial? Feeling Foggy

Yesterday felt surreal. I had to wrap my brain around new test results and at the same time say goodbye to my therapist who is being transferred out of my area. Second time this has happened mid therapy and it's sort of annoying and scary. BUT in some ways it is good, because a new therapist brings fresh eyes on the situation. So next thursday a new person will come to my house. I hate meeting new people. And my home is my sanctuary. But I realize I need help coping with these health issues.

Yesterday I was in a daze while I said goodbye to Mikaela, a wonderful person who has helped me deal with the uncertainty and terror of living on the edge of anaphylaxis. I also saw my general practitioner for a sinus infection from hell on top of all the other stuff and talked with her about my test results. And an urgent situation happened where a friend needed a place to crash. So a very sweet man temporarily moved into our house. Also, he, some other friends and I all found out that a local organization is in a bit of trouble and needs a hand getting rid of the bug infestation from hell. So we were problem solving. And all this while in a fog. It didn't seem real until I woke up in  a state of clarity this morning.

I think the reason for the fog is that the day before yesterday, I was given my first really non-normal test results. My PGD2 test came back positive/prostoglandins are a little too high. This apparently confirms that I either have MCAS, MCAD or Mastocystosis. In a way I felt like he was telling me what we already knew, but I realize now that he was telling me he wasn't sure until he saw this test result. In normal semi medical speak, it means that either my mast cells are too plentiful or too abundant. To simplify that further it means that the cells in my body which are supposed to attack disease and protect me from allergens are either being over create or are misfiring and shooting out too many hystamines when they're not needed. Hystamines are supposed to protect our body from allergens and irritants, but *my body* is recognizing MANY things as allergens or irritants to varying degrees from annoying itching to anaphylactic shock.

This morning when I woke I realized that I  had been moving around in a bit of a haze yesterday and the day before. I had a long confusing talk with Dr Lewis when he called me in same day (Wed) for a consult. Lots of numbers and big words and possible courses of action. The words that my family remembered are "it's not cancer and it's not an infection" and the words I got stuck on are "so it is not urgent and you have time to sleep on it." I think in part because I've been told some kinds of mastocytosis ARE cancer, and I know the treatments for too many mast cells are basically chemotherapy or symptom management. Neither of which are great or perfect. There are treatments which I am currently not getting which could be more likely to be given if I have mastocytosis. There are other treatments which would only be given if I have mastocytosis.

September 15, 2013 Empowerment

So, sleep on what? Well the decision  on treatments really. The decision between options.  Should I go ahead with a bone marrow biopsy, or bone density scans or just wait for the results of a GI biopsy sample being sent to Rochester Mayo for proper staining, or just wait, play food roulette, and see if I have another major reaction and have the ER do the tests Dr Lewis has ordered. I still have minor reactions daily. I think my tooth paste is making me react. Rice made my mouth tingle just sitting in my mouth, and by the time the benedryl started working (20 minutes) I had developed itchy eyes, and was starting to get hives and my lips swelled a bit. Carlie sat by with an epi pen in case I shocked. Then When I tried to put vaseline on my cracked lips last night, my mouth then thraot and ear canals got itchy.  But I was feeling pretty non reactionary when I woke and more clear headed than I had in a while, when I realized all of the above, and then I brushed my teeth and my throat went back to it's almost constant slightly swollen feeling. So I need anew tooth paste now. Is this what I'm going to live with forever?

I woke this morning in a state of horrifying clarity and realize the last 2 days were a blur. I think I was in a bit of denial at the test results being important. I guess before those test results came in they were still holding open the option that it's all in my head or some other cause?

My general practitioner's assistant gave me a referral to a dermatologist for my back "freckles" Which swell and itch when irritated...or whenever they feel like it. Apparently they are thought to be cutaneous mastocytosis, something which 20% of systemic mastocytosis patients have. And if a skin biopsy reveals that is what they are it still doesn't make any of it go away, tho maybe it will provide for better treatment. A bone biopsy could have 1/6 chance to catch the over plentiful or misshapen cells which are causing some or all of my health problems. Of course if it doesn't catch it, there is a 5/6 chance it missed and I still have it, and they would probably want to do more bone biopsies if my symptoms continue.

September 18, 2013 Passion

Not really great options, but everyone in my life seems to agree that I need to get the bone marrow biopsy. A nurse I trust said that if they do find that I have systemic mastocytosis there are treatments that can only be given to patients with 100% confirmation which is only possible with bone marrow biopsies. And those treatments are pretty horrible. Gleevac and other drugs which are basically chemotherapy to kill off the mast cells. I am looking into naturopathic/homeopathic methods of dealing...and symptom management... but am watching friends deal with various horrifying treatment plans and seeing how it goes for them an wondering is there a possiblity of life without all this pain and confusion? Life without illness? TMS for a cure sure thinks so:
 http://www.tmsforacure.org/welcome.php they are having a  big conference next weekend to discuss all they are learning about these diseases, possible treatments, possible cures in the future, etc. I was invited to attend with a friend who is driving out there but I just can't see the safety of going to a hotel full of possible triggers when I'm still not properly treated and thus still so reactionary.

I guess all I can do is call my doctor, schedule the bone marrow biopsy and take things one moment at a time.

Some helpful links about anaphylaxis and mast cell disorders:
http://www.ncbi.nlm.nih.gov/pubmed/18186813/
http://mastcelldisorders.wallack.us/yabb/YaBB.pl
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3500036/

All artwork is created by Sean-Michael Gettys copyright Peace Full Cretions and request to use is appreciated.

Beef Tongue - using more parts of the cow

Since my mast cells have flared up or whatever you want to call it, we have only found a handful of things i can eat without triggering anaphylaxis. The are pork, non grass fed beef, raw sugar, salt, and filtered water.

I have been trying to live simply and as sustainably as possible and reduce my footprint on the world, so previous to April had been reducing my meat intake. But now it is my primary source of nutrients. As such, I have tried to use as much of the animal as possible, animals from local, reputable farmers who can be trusted to tell me honestly what the cow ate too as I react to it if the cow ate grass, one of my true allergies.

Beef Tongue is a great way to use one of the lesser used parts of the animal which makes my local, awesome butcher happy. Simply put here is my simplest tongue recipe and it works with Amy type of animal.

Place the tongue and any connected meat into a large pot or crock pot with 2 cups water and if you can tolerate it, one teaspoon salt. My mother would like a bay leaf in there with it but I have not checked to see i f bay leafs trigger me. Simmer on low heat. We like to use the crock pot and cook it over night. In the morning slice along the side and remove then outer layer (skin) the meat shreds easily and practically melts in your mouth.

If you can tolerate rice, a tablespoon of rice flour mixed in with half a cup of the leftover liquid will make a lovely gravely. you can grind some rice in a cheap coffee grinder or a high powered blender, if you want to mill your own.

Some ways I like my beef tongue: Sliced thinly with an electric carving knife like my grandpa used to. 
Shredded like taco meat.
Small pieces in the left over liquid it was cooked in as stew.

For tacos if you can tolerate rice you can make your own "tortillas" after a fashion or small flat breads and eat your beef tongue on there.

As histamine is said to quickly develop on leftover meat, I split mine into serving sized portions, bag them and freeze immediately. One portion i chop into small pieces and serve immediately as soup or stew (if there is a flour you tolerate) by adding just a bit of freshly ground pink Himalayan salt.

These recipes are in memory of my German grandfather a Charles Carver who loved us very much and taught us sustainable cooking and gardening practices he learned in the depression. He lived by example even raising bees for honey and wax.

Sadly I am allergic to bees and can not tolerate honey either or I would add it to recipes as honey is said by some to help reduce histamine. Many sing its praises buy one tablespoon full of the stuff will triggered me even before April my hands and lips would swell and I would be covered in hives. These days I would probably go right into anaphylaxis.

Thankfully I can still eat delicious beef and pork, and I hope to eventually find even more foods I tolerate. For now I will be sharing some truly simple recipes here and with Jacob for his low histamine cook book.

Carlie loves me but not the feel of raw beef tongue. Thankfully she tolerated it and helped me prepare it.

http://www.bobsredmill.com/recipes.php?recipe=489

Simple Pleasures

Sunlight Through Leaves

In this age of the internet so much conflicting information is out there, that sometimes it is difficult to know just what to believe. It can lead to stress and over thinking some decisions. Today I had a simple reminder from Carlie. As I stepped outside to speak to her, she said, "You should stand in the sun for a while."

I stood in the sun for less than a minute before I had to come inside due to the heat, hot pavement on my feet, and my body being weak and not able to stand very long. But it reminded me of the simple pleasure of feeling the sun on my face. Sometimes it's important to get back to the basics.

Our bodies are like the plants in my photograph in some ways. We are made of mostly water, and our cell membranes synthesize nutrients, in part, from exposure to the sun. Here is an interesting article about how to safely get vitamin D for our bodies, primarily from the sun: http://www.supernutritionacademy.com/vitamind-text1/

Health and Harmony

In some ways my quest to simplify has really been beneficial and has continued forward despite my health concerns. In others it has stalled. I suppose all of my attempts, whether they have been followed through to fruition or not have been beneficial in some way. For example, Project 333 helped me really cull through my clothes and make my closet more useful. It not only holds my clothes, but serves as a changing area. I scoffed when we moved in and someone said it was a walk in closet, but if used properly, it is in fact a tiny walk in closet. I haven't measured it, but I would guesstimate it is about 3 by 2.5 feet which allows one to hang plenty of clothes, so by simplifying my wardrobe I actually had room to move my 2 small dressers in there, and by putting a cushion on one I created a nice place to sit and change clothes without small animals underfoot. Much safer. If one were claustrophobic maybe it would be a problem, but it has worked out nicely for me.

Since I haven't been going out much other than to doctor's offices I haven't had many occasions to wear my dressier clothes. But yesterday I went ahead and wore some nice slacks with a shirt that used to be too tight to button closed, and which now apparently I fit in quite nicely. Sadly, I could only find one of my slip on shoes that matched the outfit and didn't feel up to putting on shoes I would need to bend over to tie, so I ended up wearing slip on vans which totally did not match the outfit. I only went to the lab for allergy blood tests and to pick up "homework" from the G.I. doc to make sure we got rid of the bacteria I'd been fighting off. And no one seemed to notice the garish toon covered vans next to the dress slacks LOL. Sort of a fun wardrobe mishap that made me chuckle but apparently slipped by anyone else's notice. I only mention it now because I'm thinking about project 333 and how I have or have not followed through and been enriched by trying it. I have not yet gotten a full length mirror in my tiny walk in closet, so I haven't managed to take pictures of the various outfits I come up with from the 33 clothing items, and I think a few pieces of clothing that I had put in the donation pile somehow snuck back into my closet. I have 2 people who help me wash and put away clothing, so sometimes that happens. I also chose too many warm clothes for this time of year. I started the project when it was still cool sometimes, and now it is 97 degrees at night. So I probably should have started the project when it was warmer. That way I would have chosen more shorts. As it is, I don't wear a large portion of my clothing (suits, dress slacks, dress shirts, a few long sleeved pull overs) and don't think my 3 pairs of shorts would be enough if I were going out of the house more often, but since I'm not it's working just fine.

My bedroom still needs work, but it is coming along as well. The large empty dresser which was collecting stuff has now been moved into Nick's room where he is making use of it. Really looks a bit empty right now as the only furniture is my alter, a phone/printer stand, and my hammock, but Patch asked what I wanted for my birthday and I said help finishing the organizing and setting up of my room. Hopefully she will go for that. I would like to build and set up shelves and a fold away desk along the wall which used to have the large dresser, and I plan to make some sort of decoration incorporating some shallow shelves and hiding a stable grab bar or two next to the hammock to help me safely get up and out.

So a bit of cleaning and organizing needed in the bedroom that I haven't been feeling up to doing, but hopefully as we figure out what is going on with my health I will get back to a place where I can do some tidying up on my own, and hopefully people will take me seriously when I say I want help finishing my bedroom mods for my birthday. Looks like I'll have to postpone the trip to California for my birthday tho. It's just over a week away and I'm definitely not in a place to be getting on an airplane. Plus my mom is rightfully worried that she would feed me something wrong and put me in the hospital or worse. Since I don't even know yet what I can safely eat or be around, how is she supposed to know?  Maybe in August I can escape some of the heat here and get time at a beach.

I had my upper endoscopy and spent a few days dragging and sore afterwards. My throat is still sore, but my gut was feeling a bit better. He said that he saw no signs of EoE but my stomach and the bit after my stomach were inflamed and he took biopsies of some particularly angry looking areas. He noted that there seemed to be an overproduction of acid in my stomach, and prescribed Prilosec. This means in the morning I take my thyroid medicine, then wait an hour, take Prilosec, then wait a half hour, take my allegra and I can eat. I've been eating mostly rice. Rice porridge in the morning and rice with a bit of pork butt or pork ribs later in the day.

I watched a beautiful. french movie called Romantics Anonymous which I recommend if you like subtitles and romantic awkwardness. I think there was something missing in the translation, literally. I suspect some of the English words used in the subtitles were not quite what it would have been had I been watching in it's native French, but the visuals were beautiful. Down side, it made me crave chocolate and I decided to eat some of the lovely dark chocolate I had in the cupboard. My stomach did not like that. I am not sure if it was an allergic reaction or just an upset stomach reaction, but lots of bloating, belching, and nausea ensued. I'm still paying for it today. So no chocolate for at least a month. I think I will give the rest of the dark chocolate to Patch, and find some gluten free friends who want some of my gluten free chocolate chips and other things I have in the house that I shouldn't be eating. I think chocolate is one of the most difficult things for me to give up.

Overall it has been easier than expected to avoid foods. The first couple weeks were a real challenge, but I have gotten used to mostly eating rice and pork with the occasional other thing thrown in to test it out. It's a very slow process, and I'm not even going as slow as I would be if waiting for the allergist to tell me specifically what to try. She would have me trying one thing a month. But since she told me it was OK to eat things I don't THINK trigger me, those are the things I am testing about once a week with time in between to recover. So far the only thing I think I've found which doesn't cause a reaction is olive oil. And I"m not 100% sure about that because I do notice some symptoms on days I use olive oil which it may be causing but they're things like acidic taste/feeling in my mouth which may not be allergies but could simply be acid re-flux for all I know. So for now, I've been avoiding olive oil while I recover from the upper endoscopy. I may try it again when my stomach settles down.

The new medicine schedule is a bit annoying and so far means I end up not eating breakfast till around noon since I get up at 9:30 and forget to take the prilosec an hour after the thyroid meds. By the time I've remembered and taken all the meds in the right order and apart from each other my stomach is sore and rumbling but all I can tolerate is some mild rice porridge. Luckily I have created a fast an easy way to make some by blending rice milk and rice from the fridge and then adding some salt and sometimes a bit of sugar after heating it in the microwave (we prepare a cup of rice or more in the rice cooker daily so there is some left over in the morning) I know it's not the healthiest thing to eat, but it's all my stomach seems able to handle in the morning and the only thing i can tolerate without allergies right now. Hopefully soon we will sort something more nutritious out. It turns out the nutrient replacement drink my allergist usually prescribes has coconut in it, which I'm mildly allergic to. She said I could try it, but I'm not so sure that is a good idea. Her office said there is no alternative which I know is not true. I definitely need to talk to a nutritionist because my current set of doctors seems to think it's perfectly fine to subsist on rice and pork forever. How this doesn't concern them is beyond us. I know people who have gotten scurvy from not enough vitamin C, so at the very least I know that I need to find a way to take Vitamin C that doesn't trigger my citrus allergies and I'm not even a doctor. How this isn't worrisome to them is beyond me and makes me question whether they actually have any interest in making their patients healthy. It has been very frustrating to say the least. Hopefully we will find some solutions soon.

Tiny House/Gallery on Wheels - More than a Dream?

One Sketch of ObscurAbode Dreams

Recently I was feeling really down due to health problems. I wondered, will I ever get to live out my dreams of a tiny home/gallery on wheels? And I was chatting with my bro, Milo about it. We had a moment of clarity when I asked if he'd like to help me build the Tiny Home/Gallery on wheels we've been talking about, live in it until we some day help him build the cob home of his dreams, and let me bunk with him when we run gallery showings.

I love this guy.  We aren't related by blood, but I love him like a brother and  we sort of adopted each other when he was 18. He is one of very few people in the world who I have told they could live or crash here in our home if they ever needed to. Strangely, Milo is the only one of the 3 non blood relations who hasn't taken us up on it. I say non blood relations because the same holds true for my sister, but we've never lived together as adults.  Milo is currently staying with some friends of ours in exchange for his help in turning their yard from dirt nap to sustainable desert oasis. He has a great site called Vegan Meal Adventures http://veganmealadventures.com/ which I have mentioned before, yet he doesn't hassle me for being a meat eater because he knows how much I love and miss my veggies and how I long to eat them once we get my allergic reactions sorted out. He is also one of the few people who really gets all my health problems yet doesn't treat me like broken glass. And last but not least he's an artist, and we have a common love for tiny homes, and sustainable living. Why we have never discussed the possibility of teaming up to make our dreams a reality before this? I have no idea, but I'm glad I gutted up and asked the question. And his response was an instant YES! No hesitation.

Dreams of Creating a Tiny Sustainable Lifestyle

We agreed that we will not build anything until he is out of school and my health is more under control. So that gives us till Fall 2014 or so to brain storm, plan, fund raise, save, scrimp and make it happen. In order to move from dream to reality, we decided the first step is to share all the sketches and inspirational photos we like with each other, so I set up a google docs folder, and we are using it to brain dump all our ideas, hopes, goals, dreams, and inspirations towards a tiny home/gallery on wheels. Originally I was thinking of calling it ObscurAbode, but we're going to toss other names around like Pinwheel. We figure the name will come together when the house/gallery does.

I suspect a few things will hold true: Our design will be creative/artistic as we are both artists, meticulous as we both tend to research, plan and prepare with attention to detail, as self sustainable as possible, innovative, and accessible to people with disabilities. The rest is going to come together after we both share what we need, want and hope to see in this project.

It presents a unique challenge to create something which is both a house that feels like home, and a gallery which is open to the public. For one thing, we have been discussing how to make the most use of vertical space and still have it accessible to people with mobility issues. This is important not only because I will be staying there on occasion, but more importantly because we want the gallery to be wheelchair accessible. Two of our most fun and innovative ideas have been inspired by thinking about people with disabilities as relates to our tiny home. One is a chair rail/lift system which can be used with or without power to move around the home both vertically and horizontally, and another is an accessible fold out restroom/changing room/shower. Both are very exciting and we are looking forward to making them a reality. In the mean time, I am sketching, playing with a floor plan app on my cell phone, and considering building tiny models so that we can visualize our ideas in 3d. Will my dreams of a tiny house/gallery on wheels come true? Stay tuned!

Brown sugar and olive oil cookies

Due to allergies I am currently only allowed to eat very limited set of ingredients. So it's been a bit like playing a game of mystery box cooking. You are given a pig, several kinds of rice in all its forms, sugar, salt, olive oil and water. You don't have to use all of the ingredients but you may use nothing else; what would you make?

I made several things but for this post I just want to share these brown sugar and olive oil cookies. I was starting to feel pretty trapped and limited to simple rice and pork loin with a bit of salt or sugar now and then, so I started to get more creative. I was craving desert and something crunchy so I decided to try to make a cookie out of brown rice flour and this is what resulted.

Ingredients:
1 Cup Brown Rice Flour
1/3 cup brown sugar
1 quarter teaspoon kosher salt
1/3 cup water
3 tablespoons cooked rice
1/3 cup olive oil of your preference

Instructions:
Preheat the oven to 350 degrees and line a cookie sheet with parchment paper.

Stir dry ingredients together: 1 cup brown rice flour 1/3 cup brown sugar and 1 quarter teaspoon kosher salt. Place 3 tablespoons of your favorite cooked rice in 1/3 cup of hot water.

Allow the rice to soak in the hot water for a few minutes. In order to release the starches, stir and then mash with a fork, and stir again.

Add pt 1/3 cup of water and rice mixture and 1/3 cup of olive oil mix until all ingredients clump together into pea size or larger pieces.

Using your clean hands form the mixture into slightly flattened spheres of dough and place on the cookie sheet about an inch apart. Bake for 15 to 20 minutes until the bottom is golden brown.
Allow to cool on a cookie rack, and enjoy!

Also goes nicely with a salted caramel topping, tho I haven't quite perfected that recipe yet, so that will have to wait for another post. If you try these let me know what you think and what if anything you would do differently.