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.