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.

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.

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!

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.

Personal Victories, Past, Present, and Dreams

Newport Beach, CA the water I miss

I woke up early this morning from an amazing dream. Due to disability, I have not been able to swim or surf in the ocean in many years. It has been over a decade since I have been in the ocean. I plan to join a disabled surfers group in the near future to get back out there. But in the mean time, I occasionally have amazingly detailed dreams about the ocean, and woke this morning from one. It was beautiful, and I only hope my words do it justice:

 It was sunrise and I was walking on a beach from my childhood. Above and to the right the sandy cliffs rose high above our heads, below and to the left the ocean was starting to come into view as the waves lapped at the shore, and the sun started to bring a soft twilight view of the water. Salt and cold spray clung to my skin as I walked along talking with a dear friend, Regina about growing up in close proximity to the beach. Sand softly pushed through my toes with every step as I walked on the slightly firm, slightly soft area that was damp but not under water.  A light in the distance told us another friend, Antonia was walking the long way around to this private, secluded area which required a long hike down a cliff or the luck of the tides and a long walk. Either way, this beach is frequently in my dreams even tho in real life I can not physically get there. It is beautiful.

Sunrise Yoga

Soon the rays of the sun bathed the beach and us in a radiant sunrise (despite the fact that the sun actually sets in the west not rises) and the sand looked yellowish brown like toasty polenta. I knelt where the waves were lightly lapping at me and told my friends stories about being a child and lifting hands full of wet sand to fall around me back into the ocean. Probably a memory of the first time my mother told me it's not nice to throw sand. Antonia knelt and joined me in grabbing hand fulls of sand as the light shifted colors and brightened and the sand and water colors shifted in response. I basked in the experience joyfully letting wet sand fall around us. We were filthy but filled with joy. I fell back into the water and let it push me around gently and lap over me. Being a dream it was just nicely cool, not freezing as it would be in reality this time of year. It felt like a summer day, and as the sun rose and others started arriving to enjoy the beach I was beaming with joy and woke feeling love, strength and human dignity.

 In the dream I also told Regina about something that happened in reality. I think in many ways, dreams can help us heal from and process our lives. I have been missing the beach, missing my friends who live in CA, and was emotionally really torn and exhausted from a hard day.

Rainbow YES pin and rainbow ribbon

Yesterday, February 26, 2013, I went and stood in line then went through a security area where I was made to wait for 6 journalists to enter before me while I stood in pain, then made to walk through a metal detector where I  had to take off my belt and anything metal and then be scanned by a wand because who knows what set off the detector, maybe a metal button on my jeans, and then walked around the Orpheum theatre including a long trip down the aisle to the microphone to speak, and then back up afterwards. All without my wheelchair, PHEW! I, with what I guess was hundreds of other residents of Phoenix, AZ was there to speak to our representatives about changes to the Human Relations anti-discrimination ordinance which would include people with disabilities and people from the LGBTQIA rainbow. Specifically the language included gender identity and expression, which was 22 years in coming, and I am grateful for so many people showing up to speak their minds. Personally, it was one of the most physically and emotionally draining things I have done in a while.

We had left my wheelchair at home, not realizing there would be a long line since we arrived an hour early, nor did we realize how huge an area we would need to navigate. And although I have done this sort of thing before, and had to listen to the bile and hatred expressed by some who would use their religious beliefs to try and define other people's human rights and protections and try to strip us of human dignity, it is never easy. There were so many on both sides of the issue that it was a challenge even for someone like myself who has decades of experience standing up for human rights. One friend had people clap loudly in his ears at anything against the changes to the ordinance and kick his chair.We had annoying people near us, but nothing as bad as what he dealt with, and were fortunate to sit with people who support us in being who we are.  And it's always shocking and hurtful to us how people who call themselves Christians seem to forget the whole country is NOT made up of ONLY their religion. Patch reminded me to point out that we are not nor should we be here to discuss religion, but human rights and protections under the law. Not all of us identify as religious, or Christian why should SOME people's religion dictate ALL people's lives. I did not mention that in my speech tho.

It was a huge personal victory for me simply to not use my wheelchair and only a walking stick at this event, even tho I had to stop and sit and rest several times along the way. My diabetes acted up also because it had been so long since I ate. So many people testified and they let everyone have a minute (some people went over slightly) so I'm told there were 5 hours of testimony.

I spoke several hours after arriving. And I had eaten an hour before arriving. By the time I spoke, I was shaking and had a severe headache and my face was a bit numb on the right side, which sometimes happens when I have migraines. It wasn't nerves by the way, although I was nervous and emotional, it was a blood sugar crash. Fuzzy headed and emotional from hearing hours of testimony, plus with 1/2 the time usually allotted, I only hit 2 of my 5 points, but I am told I was well spoken, and I was glad to hear it. I shared from the heart and shared 2 personal experiences of discrimination based on gender, perceived sexual orientation, and disability. I could have shared so much more, but I was tired and felt drained before even trying to walk down that aisle and stand in front of that microphone.

The walk back up felt victorious but strenuous. Like a huge hike up a mountain even tho it was just a sloped aisle. I am grateful for everyone who spoke, and that they gave us ALL the opportunity to be heard. Afterwards, Patch took me out to dinner. I downed some sugar, gave and got some hugs, and headed out to dinner where we spent a wonderful time reviving our bodies with delicious healthy foods. Then we went home and I took my medicine and lay down with the animals and Carlie in the dark for an hour to recoup. Still exhausted, I went to bed and slept from 9PM to 3AM. I'll go back to sleep in a bit for another few hours, but I wanted to write down what the dream and the real life experience were both like for me, because both were powerful.

I know this is a very different topic than I usually cover on this blog, but I felt it was important that both be shared as they are, quite simply, both personal victories that define who I am. What do you dream and what do you experience that go into the whole of your human existence and feel like core pieces that simply can't be left out of the whole? For me both the dream of the beach and the experience speaking about discrimination I have experienced represent love and human dignity.

Early Morning Joy on Hearing We Won

I am proud of who I am, and how far I have come. And I dream of a future when people do not have to fight for basic rights and protections, but simply are themselves, and free to be. No matter how you feel about such things, I have and will continue to stand (or sit as needed) for your right to free speech and equal accommodations and protections under the law. I didn't ask for any special rights tonight, just for the basic equal rights I was raised to believe all humans should already be afforded in this world. I'm glad today Phoenix took this small and much needed step. And I am grateful for the healing of my beach dream, and the knowledge that there are ways for me to experience the ocean once again through disAbled activity groups. So some day soon, I will get back into the water just as today I faced and tackled some major obstacles physically and legally. May you have love, and thrive in your life wherever and whomever you are.

Finding healing through food

Cure for Diabetes: The Benefits of Artichoke in Diabetes Mellitus

I would like to try these in my yard. We will see how they do. It would be interesting to see if they are helpful in my quest to live without diabetic complications while getting off pills.