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.

Step by Step

Don't Give Up Doodle

Sometimes life has to be taken one day at a time, and sometimes step by step. I've been slowly healing from my last trip to the hospital. While there, they put me on antibiotics which apparently allowed some bacteria in my gut to run rampant, and I ended up having to go through two courses of a really strong drug to get rid of it. In the mean time I managed to get in to see my allergist/immunologist who told me "You are allergic to everything...well, pork and tuna would be OK to eat."

Living on pork and rice with the occasional tuna did get me feeling a bit better gut wise, but then I was feeling lethargic and weak. Not sure if that was part of the healing process or due to my not having a balanced diet. So far I've only been on this elimination diet for a week, but by yesterday I started feeling desperate for something other than pork and rice so I slathered some peanut butter on a rice cake for a snack, and had a sweet potato with dinner. Allergies responded to something, but I'm not sure which it was. So I'll eat sweet potatoes today and leave out the peanut butter to see if I start feeling better or worse. Step by step.

I'm in foodie hell, and I'm trying to stay positive and focus on getting healthy, but i have to admit this constantly feeling like crud is depressing and then finding out I'm allergic to just about everything and trying to figure out what things I can eat without making myself worse has added to that. But today a good talk with a friend before he went to a job interview got me back on track.

I had thought it was Friday and had planned to call a lawyer about updating my medical power of attorney documents, but decided since it's Saturday to relax, watch Spiderman with my loved ones on the couch, make a blog post, and if I feel up to it, to go get a much needed haircut. I always feel better the day after I get my hair cut. Maybe if going to the barber doesn't exhaust me too much we can go see the latest Superman movie tomorrow. Maybe not. One day at a time. I have to remember that.

Slow healing

I have been sick for a long time. Sometimes it seems like just as I start feeling like we may have found a happy balance something else hits. Thankfully they did find a bacterial infection they could treat and that sounds seems to have helped a lot. I am also avoiding most food and sticking to a few foods. My allergies seem to have calmed down a lot, but I would still like to find more answers and get back to being able to participate in life more. Still, it has definitely forced me to focus on the moment and keep it simple in almost every area of my life. Each day I try to have one goal, and to make note of something positive I did or noticed about my day. For example today I set up a Google docs folder for a group of friends updating the Phoenix Trans Resource Brochure. After doing that I rested and tonight after Nick and Patch get home we all plan to watch a movie together that we have each been hoping to see. Carlie is out of town for work, so it will be just the night owls. It took resting all day so I can stay awake for the movie tonight, but I am looking forward to it! Got to make time with friends and loved ones between doctors appointments and being sick in bed. Even if that is just a relaxing night at home watching a movie, it will be fun!

Tiny House, Big Heart

http://www.indiegogo.com/projects/tiny-house-big-heart?c=home

I am nowhere near being able to have my tiny home/gallery/art studio to go, but I think the artist in the video I linked to above is heading towards their dreams in a wonderful way. I'm broke right now due to medical bills, but as soon as possible I hope to make a  donation towards their tiny house :) Please watch the awesome video and check out their perks.

My Mysterious Red Hulk Disease

May 1st, 2013 - Pale and Sick, but not mid Occurence

I don't usually discuss my health on this page, but lately things have been bad, which has lead to me missing my Sunday blog post, and I have been getting so many questions about my health from friends, that I thought a single link to point people to for answers might help. Took me all day because I had to take breaks and naps, deal with medical professionals on the phone, etc. I tried to sum up what happened in enough but not too much detail since it was a rather disgusting and terrifying experience that I don't really want to relive.

April 16^th I went in for a deep cleaning at the dentist. All seemed to go well. That night I had the first occurrence of whatever mysterious health problem I have been suffering from.  The symptoms were weird and included initial itching on one part of my body that then turned into a painful prickly burning head to toe, & a flushed face and palms.  It was then followed by gastric distress which lasted for hours before I parked myself in the bathroom in fear of vomiting etc. and found myself in a cold sweat and losing consciousness.  My body evacuated everything in it just before the EMTs arrived to find me laying on the bathroom floor shivering uncontrollably, and unable to sit up without passing out. 

That first time at the ER they got me re-hydrated, gave me Benadryl and sent me home.  They were convinced it was allergies to the Novocain or some such thing, although there was no proof and my white blood cell count was up which they said might indicate an infection, so they told me to follow up with my Primary Care doctor and Endocrinologist, which I did.

May 2nd - "Red Hulk Disease" Lobster Face in Lab

The next 2 weeks were filled with visits to multiple doctors and several smaller re-occurrences of the above but without the passing out. I was mostly in my house or at a doctor. It seemed to happen every few days, but not as intensely as the first time, and it did not include passing out. I saw my Primary Doc, Endo, and a G.I. specialist’s PA. Many tests were done, and ordered.  On the morning of Thursday May 2^nd we went in for the tests the G.I. specialist had ordered. I had my blood drawn, and went in to use the restroom when suddenly everything started all over. They said my face turned lobster red and then white as a sheet. Because I could feel the same sensations as before, but much worse, so I knew that my face was red and took a picture to show the doctors this weird symptom.  The lab techs helped me to an exam table and I started to go in and out of consciousness. Patch was called in and it only got better. She says my fingertips were turning blue, so they called 911.

Final I.V. and red stripe (reaction to an antibiotic)

In St Joe's ER they gave me I.V. fluids, and covered me in warm blankets to raise my body temperature which had dropped. My veins kept collapsing or running away from them, which was painful to say the least. My GI problems worsened so they admitted me to the hospital.  They gave me 2 bags of IV fluid in the ER, and two in the room plus  more with antibiotics before I started feeling more stable and my blood pressure started to go back to a more normal place.

I was in the hospital from May 2nd through the 5th. While in the hospital they took an EKG and X-ray of my chest, discovered it was clear, did a CT scan of my gut and discovered swelling "colitis" but no visible masses. I started to feel like a pin cushion as they had a very hard time finding veins. While in the hospital, the blood and urine tests came back to show that my white blood cell count was really high, indicating an infection, and they gave me I.V. antibiotics, which I developed an allergy to, and Flagyl which I am able to take in pill form. They ruled some things out but found no clear answers, stabilized me, and released me to recover at home and follow up with various doctors.

Patch Sleeping on the Couch in Room 5T10

Patch and Carlie were invaluable support while I was sick. At times I honestly thought I was dying. I know, that sounds melodramatic but when i couldn't stay conscious or coherent and waking up to people wiping my mouth and a nasty taste while struggling to breath and hearing people calling 911, I honestly didn't know if I'd make it. When they were discussing the possibility of needing to transfuse me and talking about internal bleeding, I was pretty scared. Patch and Carlie were like lifelines on a rocky sea and visits from Nick and Henry, kept me from descending into too much depression or panic.  Everyone at the hospital was respectful, and professional. The nurses were amazingly compassionate and great about explaining things to me, which helped reduce my anxiety some as well, but over all I felt anxious the entire time and am really happy to be home in my own bed, with my loved ones and animals to snuggle with. Nothing like falling asleep surrounded by soft warm purring cats and loving dogs.

Good News - It's Not Ecoli, Cdiff and It's Not a Tumor!

They found many things which I do not have including heart disease, E-coli, Cdiff, some genetic blood disorders, Celiac disease, a GI tumor, or Cushings, and they took some biopsies to look for other things. I have an appointment tomorrow afternoon to find out the biopsy results and follow up with the GI specialist who treated me at the hospital. The list of things that are not wrong with my body are increasing, but they have yet to narrow down what has been causing my symptoms so I am really hoping  he has answers for me tomorrow afternoon and we can resolve these issues ASAP so that my body can heal.

On an up note, I am stronger every day,  At first I was so weak that I was barely able to walk back and forth from the bedroom to bathroom and I spent the first two days at home sleeping a lot. My big excursion yesterday was a trip to the next room to sit on Patch's lazy boi chair while she cooked, but today I was able to come sit on the couch with my family for dinner and a few TV shows, surf the net, write this blog, and do some research about dying yarn. I missed my trip to Hawaii and had to cancel my plans to attend the Men's Knitting Retreat next week as I will be at doctors and hopefully healing, but I will not be anywhere near ready to fly to New York and participate in a retreat.  

May 7th, Finally Able to Sit on the Couch

My intention is that we find answers, and I get back to the health level I was at before this happened or better. I would very much like to be out riding my trike, participating in community events, knitting, participating in Farmer's Markets and art shows, etc.  Heck, I'd like to be in Hawaii with my family which is where I was supposed to be May 2-10. And I'd like to go to New York next week, but that's not going to happen. All my time and energy is focused on finding out what is wrong, not having another recurrence, and getting healthy. Positive thoughts, prayers, candles, happy naked pagan dances etc. are most welcome.

Update: Tests are still being done, but it turns out to be, at least in part, due to Anaphylaxis caused in part by Oral Allergy Syndrome. More tests are being done.

Update 2: 6-30-13 After my Hospital visit in May (during which they said they were 99% sure I did not have C-difficile, I tested positive for it and was put on a total of 20 days of medicine to kill it off. In 2 weeks I will be tested to see if it worked. Fingers crossed. My allergic reactions continue, see later entries for details

Simple Does Not Equal Boring

Nuwave Baked Chicken

Recently my health has taken a turn for the worse. After a deep cleaning at the dentist, I had a scary night of a weird set of symptoms that landed me in the ER, poked full of holes until they finally managed to get some blood to test and get an IV in me. They sent me home with no real answers, and they told me to see my primary care doctor for follow up. My doctor told me to avoid dairy, nuts, fatty meat, and to stick to the "bland foods diet" and specifically limited my foods to "things that are easy on the stomach" such as chicken, chicken or turkey broth, wheat bread, brown rice, diabetic friendly pasta, sweet potatoes, the occasional other type of potato, bananas and apples. Normally bananas are on my food intolerance list, but since there's so little on my list of foods I am currently allowed to eat, I decided to try them out again.

I also decided to think of it as another step on the path towards simplifying my life. After all, much like Project 333 makes deciding what to wear that much easier, limiting what foods I can eat to such a small list really does make things simpler too. I figured I might as well embrace it.

Vegan Banana Soft Serve Ice Cream

At first I thought of it as "bland food" and made boring things to eat like a plain sweet potato. But then I started to get a bit more creative. Last night I froze smashed banana and ate it as ice cream. (I neglected to take a picture but found this one on healthyrecipes.com) This morning for breakfast I had whole wheat egg free pancakes with apple sauce. And for dinner carlie cooked up some "fried potatoes" without oil and baked some chicken in the nu wave oven with just salt and juicy, crispy baked goodness. Simple, but delicious. I look forward to being able to eat my nut butters and green smoothies again, but in the mean time I have been making the most of what I can eat. And hopefully some time soon my body will click back into gear and I won't be forced to eat such a limited diet. But in the mean time, it has been a good reminder of what one can do with so little. Simple does not have to equal boring.

Baby Fishies!

Me in my Tie Dye T and Loom Knit Drop Stitch Slouchy Hat

I was going to talk about the joy of successfully completing new (to me) designs or projects like this drop stitch slouchy hat, but then this happened instead:

Sometimes it's the little things, the very little things that make us happy. This morning I went to check out my Aquaponics system, and while I was cleaning leaves from the top tank I realized, there was a tiny black molly fish swimming around. I guess the fish are doing OK, because they had babies! There was one tiny black fish swimming away, and when I lifted one of the rafts to try and see the rest I only found one large adult clinging to the roots from the plants, so I gently lowered it back into the water thinking maybe other fish were hiding in there before I lifted it up, and screamed in child like glee, "Carlie we have baby fishies!!!!!!!!"

Apparently she'd gone inside without me realizing it, so I was just there talking to myself. Sorry, no photos of the fish, they're too quick! I had worried the Ph of the water was too high and all the fish would die, but so far they're all alive, and apparently they're healthy because I don't think sick fish would breed. What a joy it is to see even one tiny black molly swimming around that tank.

BABY FISHIES!!!!!!!!!!!!!!!!!!!!!!!

Project 333 and Me

Sean-Michael Experiencing the Joy of Organizing

The last few weeks have been emotionally rough (see previous 3 posts) but many good things have been happening during this challenging time. For one thing, it has forced me to really be certain to take care of myself by and make time for cleaning, organizing, reading, relaxing, time with loved ones, time with friends, and times away from the computer/meetings/etc. A major part of that has been about cleaning, organizing, and slimming down the wardrobe for Project 333 which I started on April first.  If you don't know about project 333, check it out here: https://www.facebook.com/Project333 and if you're interested in trying it out yourself, check this out: http://theproject333.com/capsule/ but in the mean time I hope this brief write up of my last 2 weeks experiences around 333 will help.

2 Small Dressers, one with a pillow on top as a changing seat

After starting Project 333, I noticed that my wardrobe seemed to multiply on it's own. Almost as if by magic, clothes would show up in drawers I had intended to no longer use. People were giving me clothing, or moving clothes that I had put in the goodwill pile back into my dresser thinking that they were helping me out. I was starting to really stress out about it when a dear friend contacted me and offered to come over and help me clean and organize my bedroom. IT WAS WONDERFUL! Together we tackled a room with many piles that had just been dumped somewhere when arriving home tired, and had become overwhelming. We also tackled a closet that was littered with plastic bags full of yarn, art projects, clothes that needed to be donated, etc. He vacuumed my closet for me after helping me pick up the floor. We emptied my large dresser, moved 2 smaller dressers into my closet which were previously tucked away in a part of my room, got rid of any pajamas, underwear, socks, work out clothes, and swim trunks I no longer wear, and put the rest in the newly cleaned closet. They are now organized by type and color.  He said that he enjoyed doing it so much, he hoped I would invite him back again the next week, so I did with gratitude. And all day after he left I kept going in for a few minutes here and there and further organizing things.  Each time someone new came home, I told them all about it and took them for a tour of my small but organized closet which suddenly felt huge, beautiful, welcoming, peaceful and wonderful! Now maybe it sounds odd to wax on about a closet. It's where we store things, not a place to relax and unwind after all. But I found the whole process freeing.

Hanging Shirts 

Also, I have found that my original clothing choices for the 3 months was unrealistic. I wasn't thinking ahead for the summer, and it is already getting hot here in Phoenix. I had chosen to keep some clothes that really didn't match anything I owned, so I chose to give those and some overly warm clothes to goodwill, and bought a couple of light weight polos. I am normally not a big polo kind of guy, but there are some meetings I'm attending these days which are casual but professional and I really felt inappropriately dressed at some.

Previously I only had one pair of slacks, 2 pairs of jeans, and one pair of shorts. But I can only wear jeans on a rare occasion here, and slacks and shorts are appropriate many more times. Two of those pairs of jeans were size 44, so I passed that on to someone else and kept the one pair I really liked anyway, which are size 42. The one pair of slacks was old and starting to look raggedy, but I wasn't feeling like paying for new ones when I am losing weight so consistently and would probably not fit in them soon. Then I accidentally sat in paint. Yes, turpentine MIGHT have fixed the problem, but it also would probably have eaten holes in the already thread bare slacks. And when there are only 33 items of clothing in my closet, I find myself wanting them to be 33 items of clothing that I can wear and feel I present myself in a manner that is pleasing to me. I don't want to look "tore up" just because I'm living simply.

Hanging cloth shelves with shorts and work out clothes

So we headed to the Men's Warehouse in Ahwatukee where I had bought my 2 suits which were now about 10 sizes too large. They said that they could not completely fix the suits without breaking them down and basically recutting them, but they could do a quick and dirty altering for me since I am still losing so much weight, and that's what we went with. While there, Carlie found me a pair of slacks on sale for only 20 dollars, and the store manager gave me another pair for free! Plus we found 2 polos for each of us which were on the clearance rack, and I took my slacks that were too large in to be altered as well since once you have paid to have something  altered at the Men's Warehouse future alterations are free. I came home with a really nice new pair of shorts, another on order (buy one get one 1/2 off) and the polos, and the rest of the clothing we left there to be hemmed or altered. So soon I will have two suit coats and matching pants that at least do not look like clown clothes, 2 dress pants, 3 dress shirts, 3 pairs of slacks, 2 polos, several button down shirts, 3 belts, and 2 pairs of suspenders hanging in my closet. I also now have 2 pairs of military pants, 3 pairs of shorts, 1 pair of jeans, 8 tshirts, 3 hats, and 6 pairs of shoes and boots. This does not count my pajamas, underwear, socks, work out clothes, or the uniform I sometimes wear as a Sister of Perpetual Indulgence. I think that's everything, but we will see for sure when the clothes are finished washing and then I will post a final picture and count.

Squeakers claims the military pants

I hope you enjoyed these pictures, and this account of my Project 333 adventures so far. I will start to take a photo a day of my outfits which will be posted @GettysPhoto on Instagram with #Project333, and once a week I will create a photo which shows a week of outfits which I will post to Facebook every Sunday when I'm working on my blog.  I encourage you to do the same if you are simplifying your wardrobe, I've found it inspiring to look at others pictures and see what they went about doing.

Since this is my first time doing the project I have been lenient with myself about the "rules" after all, this is about simplifying, not about creating more random rules to follow. I also have allowed myself to shift and change what the 33 items of clothing are as I live in them and realize what i am needing more of or less of min my life. It has helped me to clarify how I am presenting myself, and honestly makes picking out an outfit a much simpler and more enjoyable process! I have been getting compliments about my clothes, and that makes me feel that I am at least slightly fashionable in the clothes that I chose to keep. Being the fabulous man I am on the inside, it is nice to know others think I look good on the outside. And more importantly, I enjoy feeling dressed sharply and not having to dig through piles of clothes I don't really get much use out of, but which now, someone else can!

Do you have a method of simplifying your clothing? What is it and how does it work out for you? 
Stay tuned for that final #Project333 update picture which I will post later today.

Self Care Sunday

Sunday is usually my day off from "work" and a day of fun and relaxation with my loved ones. Carlie always has Sundays off (as long as she's in town) and Patch usually has mornings free. Soon we'll be trying to get Nick, our adopted nephew, time on Sundays too as he's moving in today and tomorrow. Sometimes we have Sunday Brunch together.

This Sunday was all about "self care" a term Shellie Ruge talked about in our recent support group for those affected by 1045. She gave us a list that breaks self care into several categories.  The 5 categories are Mind, Body, Spirit, Feelings, and Kid. After a busy couple of weeks (to put it mildly) Saturday was the largest Trans* Pride group ever to participate in Phoenix Pride. It was beautiful, and exhausting. So Sunday became Self Care Sunday and although I did still participate behind the scenes with 1045, I also managed to finally get in (Mind) an hour of reading, (Body) soaked in a tea bath and then used aloe from the yard to treat my pride sunburn, (Feelings) did some crying in front of the TV, (Kid) went out to dinner with Carlie, got some frozen yogurt yumness, and (Spirit) did some gardening and deep breathing before bed.

Paper Cutting over Acrylic Paint

Yesterday I covered each of the 5 areas by happenstance, because I'd made it  a day of self care. But really the goal is to do something different from each category, at least once a day. Since this whole thing started I have been trying to eat healthy, and make sure I do my hour of blogging each week, even tho I am not always getting the blogging done on Sunday as planned. I kept telling myself  "today I'm going to spend an hour reading in my hammock" or "today I will make art that is just for me" and then finding myself at the end of the day having done nothing. But now that I have a list of suggested activities, and orders from Shellie to do at least one a  day,  I plan to be much better about self care. Here are some suggestions in each category:
Mind: Reading, Writing, Sudoku, Body: Exercise, Stretching, Eating Healthy, Spirit: Singing, Meditation, Spiritual Practice, Feelings: Crying, Sharing, Journaling, Kid: Art for fun, Games, Being Silly.

This is important for anyone going through difficult times. I hope that all my friends will read this and take care of themselves as well.

We are All Allies in Training

A speech given by Sean-Michael Gettys at Caesar Chavez Plaza for Arizona's Celebration of the International Day of Trans* Visibility:

At "Genny's" Having Comfort Food After the SB1045 Hearing

This morning I woke from yet another restless night full of dreams about the people I love being strong, resilient human beings in the face of discrimination. And that is the nice way to put it. I also woke with some very specific words in mind, and I want to share those words with you here now. "We are All Allies in Training." Today as we stand here in Caesar Chavez Plaza, a space honoring migrant workers in the center of a city which does not, I ask you to listen with your hearts and minds wide open. To put aside any fear, misgivings or defensiveness you may feel, and to realize that we who speak to you today are somebody's sibling, child, spouse, loved one, coworker. We are human and fallible and in many ways, we are just like you.

Let's Have a FeFe! (After Casa Grande Equality March 2013)

I am a white, middle-aged man. I also am a person with multiple disabilities, most of them invisible, a human being who happens to be Trans* and I could go on. But as a white (or today pink) person, I am afforded privileges that my loved ones who are people of color do not always have. As a middle age person, I am often given privileges my friends and family who are youth do not have. As a person whose disabilities are in many ways invisible, I am sometimes given privileges my Deaf friends or people with disabilities do not have. As someone sometimes taken as straight/heterosexual, I am often given privileges my gay and lesbian friends do not have even though there's nothing straight about me.

With Casey from Wingspan at Casa Grande Pride

I have walked through this world and experienced some bits of the privilege which white, middle class men have in this world. I have also experienced very real discrimination for being perceived as a woman, a freak, a girl, a boy, Queer, Gay, a person with disabilities, a hippy, a liberal, Trans* or other less savory terms. Whether I personally identify with those labels or not, does not change the words, perception and actions of others. Both my experiences as  a person with privilege and my experiences as a person who is discriminated against have opened my eyes to the fact that I am an Ally in Training and I always will be.

As someone who is often asked to speak about being Trans, I strive to include people with other barriers whenever possible. I try to find sign language interpreters, or to sign my speech if I can, to mention Trans people of color and the multiple barriers they sometimes face, to mention populations in our society who are further marginalized such as sex workers or people living on the streets. There are many things I "try" to do to be an ally for others.

Fun with Friends and my Peace Full Creations (Knitting)

I also deal with many people who are allies to the Trans* Community on a regular basis, or those who want to be. It is a very real fear that I will say something that makes someone's life more painful, difficult or challenging than it already is in my fumbling attempts to be there for people I care about. I think it is fair to say, that we are ALL Allies in Training, even some of us who do not realize it yet. And as allies, one of the most difficult things to find is trust. Trust in ourselves and trust in others. We fear saying or doing the wrong thing, and sometimes we let it paralyze us and prevent us for being there for the people we care about. Sometimes we feel put down, attacked or "othered" by the very people we are trying to stand with.

I SINCERELY apologize if I ever make you feel less than or talked down to in my efforts to empower myself, I never want to dis-empower others. Sometimes my words may be unknown to you or confusing, and I welcome questions even if they are worded in ways that you fear may offend. Together we are stronger, and we need each other no matter who we are, or what barriers we face.

This has been a difficult month. When the Non Discrimination Ordinance was before the Phoenix Commission many of us heard hard stories from our community and some ignorant, some purely hateful words from those who would seek to prevent us from having the same basic safety and protection from discrimination that they walk through the world with on a daily basis. When many of our gay and lesbian friends celebrated, those of us who have been activists in the Trans* community for some time found ourselves torn. I can only speak for myself but I know that I felt a mixture of emotions. I was glad the Non Discrimination Ordinance passed, grateful that our allies had stood so strongly on our side and clearly insisted that Gender Identity and Expression be included so that ALL humans be protected, not just those who fit gender norms. At the same time, I was filled with a horrible sense of dread and not a little fear. I feared retaliation.

Nix, Claire & Friend at AZ House of Reps, Fighting 1432

Just as I began to work on that, we received word that Representative Kavanagh had created a bill criminalizing our very existence, and ANYONE who went into a restroom which had a label other than the sex on their birth certificate. With around 24 hours notice, and a wonderful synchronicity of events, we came together and beat that bill. Again, our allies stood with us in force. People we never knew were on our side stepped up and said no to SB 1432. And Kavanagh listened to his conservative constituents who said he was overreaching. He changed his words and instead used double speak to create a new bill, SB 1045.

AZ House of Representatives Appropriations Committee

Instead of criminalizing the actions of some, SB 1045, the #NoLoo4U bill, legalizes discrimination against anyone and everyone using a public restroom, locker room, or changing room. It also specifically states that it nullifies any ordinances that have already written such protections into law and prevents protections from ever being written in. It is an insidious law, because it uses words like "private" in order to confuse our allies who believe we should all have the right to privacy and to choose for ourselves how to act. Mr. Kavanagh believes discrimination should be legal, and that the proper response is just not to use businesses owned by bigoted people. I will not go on and on about the bill, you can learn more by talking to most people at today's International Day of Trans* Visibility event if you are in Arizona, or by going to the website paperstopee.org or by asking myself or others who are openly working to defeat the bill.

Lee, Momma Donna, at Rally day after SB1045 Hearing

What I do want to say, is thank you. Thank you to Lee Walters, Sherri Shimansky, and Alex Wagner for helping us create an impromptu community rally and information session where people could come together and ask whatever they wanted about the previous days' committee hearing and what it means for Arizona today. For a very heart felt apology given that night to the Trans* community for shushing us when we received the verdict and had to listen to Kavanagh's words of ignorance and bigotry. For those who literally held me up as my legs went out from under me unexpectedly when I sobbed hysterically at the news. I had thought I was prepared to hear that bill pass through Appropriations. We knew we probably had not won over the people we needed to.

Rev. Brad Wishon at AZ Trans* Day of Visibility

I also want to thank Brad Wishon of 1 Voice Community Center for his constant undying support and tireless work behind the scenes. Laurie Provost for her well thought out and worded speech at the House Appropriations committee and for standing up and saying the city of Phoenix does not want this. To thank Momma Donna and Casey for listening to me vent after Equality March in Casa Grande, and Kat Sinclair, Kat Crabtree and all the Kats I somehow collect in my life for helping me brainstorm and think logically when facing a bill which has reopened past traumas and brought back deep fears. Thank you to those whose name never gets mentioned, but who keep up the fight. To our partners, care givers, spouses, allies, coworkers, friends, neighbors and family.

A Symbol of True Equality Is Inclusive

To those who have asked what I need. I need a hug. I need more than one, every day. In fact humans who are hugged 10 times a day are much healthier physically, so I probably need a dozen hugs a day. I need to feel seen. Not invisible or erased. And as small a thing as it may seem to you, I need to see the words Transgender, Gender Non Conforming and Intersex used on a regular basis by people who are not living with those labels. I need to feel heard. Not just listened to, but truly heard and if that means you will ask me questions you think are crazy, ignorant, or what have you, please do so. I need to be empowered, not talked down to, or over, or even supported, but empowered. I need to be given the tools to DO SOMETHING to make this world a better place. And I want the concerns, thoughts and ideas of myself and all humans to be taken into serious consideration, not just those who are cisgender (i.e. not trans), straight, white, middle class men, and not just everyone but them. But I NEED to be heard so I thank you for this opportunity to speak.

Many of you have asked me what you can do about SB 1045. I do not have all the answers. But here are three things I would like every one here do, because we are ALL allies, not just those who are cisgender but also those of us who are allies to gender non conformists, people of color, the elderly, etc. I ask that you be honest, open, and kind. Please take the time to tell someone how you are doing and to ask how they are doing. Be honest about your own fears and the fact that you don't always know what you are doing. Be open to critique even if it is not always given in the kindest or most rational manner because even when things are poorly explained or shared, they hold a nugget of truth, and if we listen for that truth, we can grow and be better allies to each other. And be kind to yourself and others. We all are hurting in some way. Take time with and give care to yourself and others. Time to laugh, time to cry, time to scream and time to heal. We are in this together. And we need each other. Because we are *all* Allies in Training.

A Graphic Free For Use to Celebrate Trans* Day of Visibility and Show Solidarity with Arizona re the #NoLoo4U Bill