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.

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

Life, Liberty, Happiness, Simplicity

Sean-Michael outside the AZ State Capitol 3-28-13

Recently I have neglected this blog. Normally I try to blog on Sundays for an hour, but this week I was frankly, too busy, too emotional, and too tired. Every day since, I have felt the need to blog but found myself unable to. It has been difficult to put into words what we are experiencing right now in Arizona. But this morning I woke up with some words in mind, and I have come to a place where I am ready to put those words down where others can read them, even tho it is painful. Please forgive me if this is a bit rambling, I just woke from yet another nightmare.


As you know, simplicity is something I have been trying to create in my life. Yet simply living my life has become very difficult recently due to the actions of others. I know not everyone who reads my blog will agree with me, but I certainly hope people will respect that this is very real, personal and VERY hurtful for me. If you disagree, please share those thoughts elsewhere, I hear enough of it every day and really will appreciate your not doing so in the comments section. If you have honest, respectful, thoughtful questions, ask.

Please read on after the break.

Possible "trigger warning"

The Simplicity of THIS Moment

ILY Photo for Carlie

Lately I have been dealing with anxiety. Worries about the future, pain from the past, fear of what MIGHT happen. I don't want to live my life based on those. I had planned to write about this yesterday but then became distracted while spending time with Patch. There must be a balance between focusing on the moment, and being able to make plans, schedule things, dream dreams, etc. Maybe this week is about finding that balance. Maybe I have been focusing too far into the future and need to refocus on the present moment. It certainly is simpler to live in the moment and usually less stressful or at least something doable. I can't change the past or future, but I can do something about right now.

Today I can send Carlie a message that I love her and a photo of me in the hat she left at home by mistake to make her smile. I can stretch and work out, make good decisions about what I eat, and clean my room. Tomorrow will have to take care of itself for now. Maybe a week of taking things one step at a time, one decision at a time will help me feel more focused and get things done. Not that I will stop dreaming and making plans, but simply that I will savor the moments I am having now. I believe it will help me focus on what is most important to me. I'll let you know how it goes in my next entry.

Fears and Challenges I Plan to Overcome

Frank Lloyd Self Built Tiny Home

Note: At the end of this entry I do ask a series of questions and I would appreciate your input.

I have long put off actually taking steps towards building a tiny home due to fear. One of the first micro actions suggested in Tammy's book is to write down your fears, yet for some reason I did not stop and do so. Instead, I told myself that I no longer had any fears about building a tiny home, as I have already started taking steps towards doing so. Then I moved right along and read the next section of her book.

When I came to the next micro actions, I did those. Why did I skip the one on fear? Since I have been blogging about my whole process not just in building a tiny home, but in getting up the courage and simplifying to the point where I feel I am ready to move into one, I decided that this would be a good blog post. Besides, Tammy suggests having a support network, and I believe writing these things in my blog is a good way to hold myself accountable and possibly find others who support my dream. I am sure this will mean that sometimes I write in this blog more frequently than other times, but I do plan to write in here at least once a week for the time being while I sort through my thoughts and organize my current stuff, etc. We will see where this all takes me, and those who read my blog will be along for the ride. I thank you ahead of time for reading my rambling thoughts and for any comments you may make. I hope this blog can be a bit of a support network as I continue moving towards a simpler, space to call home.

This Art is Not My Intellectual Property

So fears and challenges. Here is a quick list in no particular order, a brain storm of fears and challenges as it were: My loved ones will feel I am abandoning them and won't get or support my dream, people will think I'm nuts, my mom will think I am ungrateful for the house she rents to us. My loved ones will not buy into the dream and me moving forward with it will cause division between us, I will miss my animals. People will harsh on my dream because I'm taking such tiny steps and moving so slowly. It is a bigger project than I can accomplish by myself, I will start building and find it is too difficult to complete due to my health issues and be left unable to see my dream through, I will build something that doesn't match my needs and later have to sell it and start all over. (Which I do not want to do but have seen others do) If it won't be completely accessible, what if my disability gets worse again? How will I afford/find spaces to park it when I move from place to place? How can I build a house that is able to tolerate huge shifts in climate? What if I design it with a certain aesthetic but then want to change it over time, will that limit me? Should I leave my pets behind when I travel and not allow animals into ObscurAbode because other people have allergies and it will be a gallery as well as a home? If I tried to take Pixie (my Chiweenie) with me she would fit well in a tiny home but would bark at all the strange noises and probably pee inside. If I took my cats with me, they would be unhappy because they are used to going out into the big backyard and chasing bugs. If I took all the animals with me but not my loved ones, they would miss their pets. If I left the pets behind I would miss my pets, but my cats do not do well with hanging things, and I would build a house that cats would inhabit totally different than I would a tiny house with no cats. Screened in porch versus open porch, fun hiding spaces and up high ramps for them to run on, hammock versus no hammock, etc.

It feels like too many what ifs and potential obstacles to get started, I feel like I have to figure so much out before I can even design my home let alone move forward to building it. On the one hand, I would like to have an accessible tiny home/gallery and on the other hand, I love the idea of having a bed that tucks away under the rest of the house, is it really possible to do both? Stairs are a challenge for me, should I build a home without any stairs, or should I go ahead and incorporate a few? (other than those which might be outdoors. Even if the indoors is completely accessible, a bed that is built under a single level floor with a section of floor which slides over or lifts off to reveal it might work, but then how does one go about building a ramp to get into the house? Build it as part of the "wrap around porch idea?"

So many questions, and I would like to get moving forward on the project, but really do not feel I can until I answer these questions and any others that come up along the way. Fortunately, despite the many challenges of building a home that is at once perfectly homey and welcoming to me, and welcoming and accessible to the public for gallery shows, I do feel that it is completely doable, and that a completely functional and wonderful space could be and will be built. Also, I have a lot of funds to raise, parts to get, and plans to make before I can make my dream a reality. For example my garage is not large enough to build the tiny home in and the HOA we currently live in does not allow long term parking of RV's let alone building things in the drive ways, so I will need to find a space where I can build my tiny home before I can actually start the building process.

Some of these fears have already been resolved. I know that those I currently live with fully support my dream, and understand it does not mean I am trying to run away from them, abandon them, etc. In fact Carlie has started helping me prepare and set aside for our tiny home, and has taken up the challenge to get rid of 2 things for every one thing we bring into the home. But I'll leave that for a future blog post.

For those who are reading this who have already build their tiny home, how did you overcome your own fears and any obstacles along the way? Did you have all the answers before you started to build or did you dive right in and get going? Do you have any suggestions or recommendations for me? Thank you ahead of time for your input, any advice you are willing to offer, and your support. Since this blog is in a way an extension of my very personal dream and making it a reality, I do ask that we try to be respectful and positive in comments and discussion with each other here. As I have been warned by others that some will lash out or call me crazy for wanting a tiny home on wheels, I do want to make it clear, I will not bother approving those comments to be posted, so you may as well not waste your breath. Instead, think of it as if you had been invited into my home. For really, that is what this is, an internet version of my future home. I am your gracious host, you are an honored guest. I would not expect a guest I invite into my home to be rude and neither would you expect it of me, your host. I think that's a pretty simple request :) Constructive criticism is welcome, bullying is not.