Monday, December 16, 2013

Priority Doesn't Mean What You Think it Does

So I thought I was being brilliant and mailed some clothes to myself via USPS priority flat rate. I figured a $15 was better than checking a bag for $50.

I found out the hard way that "2 DAY PRIORITY MAIL" doesn't mean shit because the fine print says "not guaranteed". 

If I REALLY wanted it to get here in 2 days I needed to ship it "2 day priority EXPRESS", because priority doesn't really mean priority unless you add another useless descriptor to the title.

And you can't complain or ask for a refund until it's later than 5 days. As much as I want the USPS to succeed and stay public, but I honestly can't see how they're going to do that by sucking so hard.

Thursday, November 28, 2013

Still Not Mad Bro

My birthday, which you may know is on Thanksgiving this year, started off like most people's day.

I woke bushy-eyed and bright-tailed at the crack of an hour before dawn to my phone ringing. The ex-wife undoubtedly wanted to wish me a happy birthday but forgot that there was this thing called "time-zones". Maybe working for years in the airline industry throwing bags didn't cover time zones. I don't know, I haven't listened to the message.

Being awake, I staggered into the living room like a child sneaking up on Santa, except I'm a 49 year old man in his underwear. The roomy got a different wake up before work this day. So I gingerly wandered back into my bedroom, beginning to feel the reason why I can't remember going to bed. The previous night's imbibery is still there in my tummy and not happy. I feel an overwhelming rush of emotion and head to the sink, but being the type of person who'd rather be cut with a machete than throw up, I fought it back and slumped back into bed.

That lasted an hour until the tummy prodded me awake. Fought. Won. Sleep.

One hour later. Fought. Lost. Slept. Fought. Lost. Dry heaves r fun.

I can't recall ever having a hangover and barfing except for when I drank a whole bottle of tequila. I can count on two hands how many times I've yakked and today almost beat that record. I wonder if I ate something ucky.

Thought I'd share.

Tuesday, October 15, 2013

Doctor Follow-up

The biopsy confirmed. Dermatomyositis.

The doctor was not impressed with my lack of improvement. He wants to start on immunoglobulin IV treatments in 2 weeks. Upped my med dosages in the meantime. Insurance is an issue of course... Expensive stuff.

I need to either get Cobra at $510.00 a month or hope Access comes through. The treatments are supposed to start in 2 weeks. Two treatments a month for like, a year or some junk. $10,000 a pop, apparently.

  • Intravenous immunoglobulin (IVIG). IVIG is a purified blood product that contains healthy antibodies from thousands of blood donors. The healthy antibodies in IVIG can block the damaging antibodies that attack muscle and skin in dermatomyositis. This treatment is given as an infusion through a vein. The effects of IVIG are beneficial but don't last very long. Repeat infusions every six to eight weeks are often necessary.

Wednesday, October 09, 2013

Red Tape No 439

In the legacy of the great band Chicago, that's the title of my new hit single.

Anywho, called United Healthcare  on Tues, Oct 8, 2013 to see if I can move the COBRA process along.
I was informed that the process hasn't been started because I am still covered by United Healthcare. When I asked if there was an end date or a cut-off date, I was told, "no".

So I went to my pharmacy and bought the meds that have been waiting for my money and sure enough, co-pays were the same and everything. Nice. Hopefully it holds out until the 15th and my followup with Dr Sivakumar. Somehow I think not.

Especially since I hung up the phone and walked to the mail box and found a letter from United Healthcare and Cobra informing me that a "qualifying event" had occurred (I got laid off) and the paperwork can start moving.

So yeah, United Healthcare says I still have healthcare insurance and that it hasn't been cancelled, but I receive a letter predating the live phone person's statement by at least two days...


I also spoke to someone at unemployment. She asked me some questions and said I'd have an answer on Monday.


Also called my attorney, as they had sent me a welcome package with lots of info and a page that started "when to call us". One of the things on the list was "SS sends you new paperwork". I received two requests for info. I told this to Vanessa, my legal assistant, and she said I should just fill them out and mail them. One of the forms was about how much I had taken from Worker's Compensation.  To the best of my knowledge, I've never applied for nor received Worker's Compensation.

Monday, October 07, 2013

Thursday, October 03, 2013


Stinky is my friend Colleen's daughter Halle's favorite toy.

Wow, that's a mouthful.

Stinky is stinky. I'm sure his name wasn't originally Stinky. This is a name you grow into.

Anyway, the crafty ones are crafting up some Stinky stuff to showcase the wonders of Stinky.

If you would like your very own Stinky, with the added bonus of knowing you helped me pay for mah meds, here's a link to the digital file on Etsy. These little pictures are fine for smiling and pointing at, but if you want to color like a boss with no nap time, download the set of five for $5. They're fairly large for printing purposes.

Wednesday, October 02, 2013

My Giveforward Campaign

A friend set this up for me after I lost my job and healthcare a week after being diagnosed with a rare, disabling disease.

Get Ideas for Your Next Fundraiser

Friday, September 27, 2013

Info dump

Applied for a grant from Modest Needs Grant. I have 10 days to upload the needed documents. Hopefully they'll be helping me pay my rent next month and I don't have to beg my family and friends again.

Almost ate it today. The knees just buckled and I'd have hit the floor hard if not for the sofa. Not sure if it was just a fluke thing or a bad sign.


Saturday, Sept 28

Picked up my thyroid prescription. The drive over was rough. My arms are definitely getting weaker, legs too. The short trip felt like I'd worked out for an hour. I tired out a couple of canes at Walgreens. They aren't any help really, since my arms are weaker than my legs, if I needed them for support, they'd just fail.

Found online:


Myopathies are chronic (long-term) diseases. To help control your illness, it is important to practice good health measures. Eat a healthy, well-balanced diet, exercise and try to keep a healthy weight.
If you have a dermatomyositis rash, protect yourself from the sun. This is because the rash gets worse after sun exposure, for reasons that are not clear. Therefore, limit time outdoors, and put on sunscreen when you go outside.
If you have trouble swallowing, eat soft or semisolid foods, or puree your solid foods. To prevent choking if you are bedbound, you should be seated up in bed to eat.
People with myopathy may look healthy and normal. It is important for employers, teachers and family members to understand the limits that muscle weakness causes in people with myopathy.


Supplements that may do more harm than good

Spirulina (S. platensis) and blue-green algae (Aphanizomenon flos-aquae) At least two patients with DM had a flare or onset of their disease after taking these

Echinacea (purple coneflower) - Has produced flares of lupus, including kidneyrelated complications

Alfalfa - Has caused lupus-like symptoms in animals
Sprouts and tablets have been linked to lupus in 

Once Again It's Time For...




List them, anyway. The things seem to keep piling on so I figured it was time for a listing, if only for posterity's sake. 

Almost fell and broke my ass today. The legs just kinda gave out and the only thing that saved me from hitting the floor hard is the sofa. My thigh muscles are about done as far as doing any real work. I can stand and walk, but any bending or stopping is difficult and crouching or squatting is out of the question. It's too painful for the muscles and I won't be able to get back up without help once I get down there.

The neck muscles seem to be about the same. Still not able to lift my head at all if I'm laying down. Sucks to have to use your already weak arms to lift your even weaker head just to adjust a pillow.

The arms are about the same as they have been since the beginning of the month. My left arm is definitely weaker, with the right being able to be raised over my head. The left won't go higher than shoulder level. My shoulders have flattened out in the back. It looks like those muscles, the infraspinatus muscle, is pretty much gone. This is the muscle that supports the shoulder joint, something that already gives me trouble on the right side to begin with.

The last few days I've noticed the dysphagia, difficulty in swallowing, has been getting worse. Eating cereal, my one fall back, is now getting tough, and even swallowing liquids is more problematic. The muscles that are already messed up are firing even worse than before.

I weigh 142 lbs. Less than I weighed during chemo.

The questions the attorney's rep asked me made me think more about what's going on. "How long can you stand without having to reposition or shift due to discomfort?" Uh, 30 seconds? 

"How much weight are you able to lift?" I can't even get a plate out of the cabinet with two hands without almost dropping it.

"Do you have trouble bending or stooping?" I can't even reach my toes to put socks on. If I crouch down, I'll never get up again unless someone pulls me up.

"How long can you walk without feeling pain or discomfort?" About a minute.

I think I have a good chance of being approved. I fit more than the necessary criteria listed and each of these are kinda severe in my case, so I'm optimistic. I am used to disappointment, however, so I'm not getting my hopes high.

And much as I hate asking for help, especially begging for money, and I know you all have donation fatigue by now, I'm definitely going to need all the help I can get. My friend, Brian Clapper, set this up for me. You can give anonymously and hide how much you give if you like. Even if it's only $1.00, it means everything to me and anything helps.

My new job

Filling out forms and applying for aid.

Spoke to someone at Salvation Army about rental assistance. I have to call at 7am on Oct 1st to set up an appointment. First come first serve. They also have a food pantry.

480-963-2041 Ext 205

They're open Tue - Fri 8:30 - 11:30am
85 E Saragosa  - off Arizona.

Called Caldwell & Ober, disability attorneys at 8:45am. Left a message.

Spoke to someone at Maricopa County Human Services Department. They can help with rent but they aren't taking appointments before Oct 14

Kevin called to tell me again that he was going to send me money but didn't.

Spoke to Dale at Phoenix Art Group about the money deducted from my vacation pay. Not sure if it's legal or whatever, but yeah. So I'm covered until Monday.

Spoke to Lorraine Steadman at Caldwell & Ober. I now have a social security attorney. I finished the intake with her and they'll mail out the forms I need to sign on Monday.

The local branch of CAP, Chandler Christian Community Center called me back. They help with rent but the first appt available, after forms are filed, is in mid October.

Thursday, September 19, 2013


On Sept 11, after months of minor and major symptoms, I was diagnosed with Autoimmune Dermatomyositis, a muscle disorder related to my cancer. The symptoms include muscle wasting, muscle and joint pain and, if untreated will lead to life in a wheelchair or bed.

On September 17, just a week later, I was laid off. I had started the application process for FMLA - Family and Medical Leave Act - which ensures that I cannot be fired while on sick leave. I spoke to the FMLA offices and started the process but hadn't filed any paperwork yet.

On September 19th I found out that Arizona has zero Medicaid coverage for adults without dependents.

Spoke to Lauri at to no avail. All she did was give me the number to Health Resources and Services Administration (HRSA). Their offices are closed now - will try tomorrow, but their website so far indicates there's nothing for me there either.


I found out that the FMLA is nothing but a piece of paper to make employees feel better, then employers can do whatever the hell they want.


An employee on FMLA leave is not protected from actions that would have affected him or her if the employee was not on FMLA leave. For example, if a shift has been eliminated, or overtime has been decreased, an employee would not be entitled to return to work that shift or the original overtime hours.

* If an employee is laid off during the period of FMLA leave, the employer must be able to show that the employee would not have been employed at the time of reinstatement. *

So, essentially, all an employer has to do is say the position was eliminated as a business decision unrelated to the health issue, but (even though it's called a lay-off), the position won't be available when you come off of your leave. They just have to prove that they fired you, pretty much.


Spoke to Stephen at HRSA, the Health Resources and Services Administration. He was as helpful as their website. No, they only have no or low cost clinic-type facilities. They don't offer any kind of healthcare themselves and have no information on who might or where I might go to find out. He did offer the Patient Advocate Foundation's number. Thanks.

He also suggest Hill/Burton facilities, which are federally funded hospitals that can't turn away patients for monetary reasons. There's one in Tucson. Now if I only had a job that paid me money so I could trek to Tuscon once a week. That's what I need! A job!


I filed for unemployment on the 17th. The paperwork to complete the app came in on Saturday. At the time I filled out the app, I didn't know how much my vacation pay was going to be so I guessed. I should have said zero, but whatever, I'd still probably have to fill out paperwork. I mailed them today, Sept, 23rd. They were dated the 19th and said I had 5 FIVE FIIIVREE days to return them or I'd be denied. Talk about small goddamn windows.

So I got my crippled ass in my car and drove 45 minutes to Scottsdale to my doctor's office so they could fill out the needed paperwork and get it returned in due time. Fax and mail. The drive was okay, no traffic. Found the office again and opened the door to a dark office. The man inside looked as shocked as I was. Apparently they close every Monday and if I hadn't been so avoidant about using the phone, I might have called first and saved me the trouble. Either way, it worked out sorta ok, as the guy in the office let me leave the paperwork for Vanessa, the office manager or whatever. Just gotta call in the AM so it gets dealt with correctly.


Tuesday, Sept, 24 - Finished the online application for food assistance. Yippee.


Wednesday, Sept, 25I tried to refill my prescriptions early, since I'm going to be completely without healthcare in the 1st of the month and wanted to get them at co-pay prices.


Apparently you're not allowed to refill meds too soon, even if it is just to horde them for a trip OR FUTURE LOSS OF INSURANCE! So, magically, the meds aren't going to get filled until the 2nd - you know, to insure that my insurance company doesn't have to do their fucking job or lay out any of the services they already took my money for. Nice scam. Insurance companies are the devil.


Thursday, Sept 26

Filled out more forms for unemployment.
Finished filling out online forms for food stamps
Had phone interview with foodstamp people
Filed for SSDI disability

Need to send in appropriate medical records.

Sunday, July 07, 2013

Mads Mikkelsen

Been following his career from his start on the Ren and Stimpy show and his star turn as Powdered Toast Man.

Sunday, May 26, 2013

It's Funny

It's not all that funny. My New Year's resolution for 2011 was to get out more and meet people and get my career moving in a direction I wanted instead of one life and other people threw at me. I started painting more and I signed up for some art and social Meetups. I went to one photoshoot with some models and set-up a shoot with a model I met on Deviantart. I wouldn't call it 'ulterior motive' or anything devious, but my thought was that I would focus on my art and my work and the rest would follow. The "rest" being what we're all supposed to be looking for. Casual sex. And maybe love.

The previous few months (years), I had been living in something of a hermitude. Hermitage? Whatever, I was wallowing in my own misery, shunning the rest of the world. Here it was, 2011 and I was throwing it out there and boom. Cancer. And now I'm back to where I started, only with cancer tagging along. I don't care about big bodily scars. I'm proud of them. They remind me of what I went through and remind me (because I used to know it) that I can do anything. But sometimes I forget and sometimes people remind me, not in a good way.

Chillin at the bar with my roommate and as usual the server thinks I don't like my food because it's taking me forever to eat it. So I tell her I'm fine, I just have issues eating. She looks at me oddly and I can see my buddy is about to help her out, so I tell her I had cancer and that it makes it tough to eat certain things, but "I can eat those", and point to the wings. I order some of the wings, she says something sympathetic and leaves and never comes back.

She brought my wings and gave my friend a soda and refilled it twice, but she ignored me the rest of the night. I had to get a barhop to refill my water. When my roommate ordered the soda, she didn't ask me if I wanted anything and bolted so fast I didn't get a chance to ask. He had to ask her for me later so I could have some water to choke down the chicken she'd brought me.

No idea if it was about the cancer or not. Maybe she just liked my friend and wasn't really ignoring me, but flirting with him. I'm aware that I might be oversensitive.

Monday, March 11, 2013

Do I LOOK Happy?

Not really much to this. Proof of life, I guess you'd call it?

Sunday, January 13, 2013


It is slow, so very slow. But it is happening. A year ago I had figured that my side effects were about as good as they were going to get. I figured a year after treatment and surgery was enough for the affected areas to heal and repair. Thankfully I was wrong.

I had thought my saliva issues were done improving last year, but I'm able to eat lot more things that I couldn't a year ago, like hamburgers and pizza and even white meat chicken, the most difficult meat for me to get down. The problem is I'm not sure if the improvements are due to my saliva production getting better or my attitude.

A couple of months ago I decided I wasn't going to play this "game" anymore and I was going to eat what I wanted, regardless of how difficult it was. So I ate pizza and hamburgers and rice and crackers and all the things that give me trouble. They still give me trouble, but I decided the struggle was better than missing my favorite foods.

For the most part this worked well. I found I was able to eat most of these things without too much trouble, though hamburgers are still tough, with all that bread as well as the meat itself. I still can't do cake or other very 'bready' things. Subway sandwiches are great but the bread I used to love tends to get pulled apart and destroyed rather than eaten, for the most part.

I think part of what's happening too is that I've learned to deal with the issues better. When things used to go the wrong way, when the muscles shoved them up into my sinuses rather than down my neck, I didn't panic and try to choke it out (which usually sent the problem food further up my nose to be a bigger problem later), I simply kept eating and waited for gravity and the rest of the food and drink to help it come back to where it should go. That "relaxing" seems to be key. I was always afraid it would go into my lungs and choke me or worse and that fear was interefering with the muscles' learning process I think - or my learning process. Now there's less choking, less gagging and less worrying.

It's a little odd trying to figure out what it is that makes some food ok and some impossible. I can eat crackers and potato chips, but not nacho chips, unless I have salsa to help get it down. Something about the granularity of the chip when it breaks down. I can eat dry crisp cookies but not soft doughy ones, unless I have a lot of milk. That was the other side of my decision - I can eat anything with enough to wash it down. It's still difficult sometimes, but I still try, and I think the trying is also part of why I'm doing better. Like physical therapy loosening damaged scar tissue and teaching traumatized muscle to do your bidding, I'm teaching the muscles in my throat how to work all over again. 

The other main complaint I've had since surgery is my neck and shoulder. My pectoralis muscle (chest) was re-purposed and used to reconstruct my neck after all the tissue they removed. This has caused issues with both my neck and my shoulder. The neck gives me problems mostly because the muscle still remembers its job as a chest muscle and any flexing that would have used my right chest muscle now activates in my neck. This used to pull my head down a bit as well as my jaw. Also, since it was newly grafted to my jawbone, any activation of it felt like it was going to tear from its new moorings.

Then there is the shoulder. The rotator cup is supported by at least three major muscles and since one was removed outright, the shoulder, now missing some support, had severe range of motion issues, not to mention the threat of it being dislocated if too much pressure is put on it. I was unable to raise my arm past shoulder height without difficulty, forget about lifting it straight up.

All that is in the past. My shoulder still has issues with tightness and some range. I still can't reach across to scratch my other shoulder. Getting there though. I can also rotate my shoulder all the way around now, including straight up. I can sleep on my stomach now if I wanted (I don't, but I could!), I can sleep on both sides again as well as not having to worry about dislocating my shoulder in my sleep like I think I did early on.

So yeah, the body is pretty amazing. Just seeing the new blood vessels that have grown through my scar tissue blows my mind. Nevermind the fact that my chest muscle has succesfully learned how to be a neck muscle.