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.