Homelessness: Clip from Obama news conference

Glad it was brought up...

I was listening from another room when I heard a reporter ask President Obama about addressing homelessness. I grabbed my camera, focused it on the TV screen and this is what I got on video.

The president talked about programs for the unemployed; to get people back to work. He mentions the homeless veterans too.

From my own personal experience, I met more disabled homeless than unemployed homeless people in Cleveland and until the Social Security Administration starts paying attention, carefully reading the medical files of those who apply, there will still be people losing their homes waiting for 2 years before an administrative law judge hears their cases.

The Northeast Ohio Coalition for the Homeless offers a take on distribution of funding for the homeless.

President Obama is taking a stand; we must too by writing letters to our representatives and pressing them on the issues of Social Security denials for disability.

Clinical trials: all in the name of science pays BIG BUCKS!

Seeking evidence of disability

I had some other topics I was planning to write about today but I caught something on the news tonight regarding another drug receiving FDA approval for the treatment of fibromyalgia so I thought I would concentrate on a timely subject by writing about my participation in two clinical trials.

Participating in clinical trials for new or existing drugs vying for FDA approval as a claimed treatment for a medical condition is most definitely a unique experience - but not necessarily easy to qualify for.

During the pre-qualification telephone interview, some participating clinics will reject you on the simple fact (and don't tell them) that you have filed for Social Security Disability for the illness that the trial is doing testing to treat. Their logic is, what if you get the active drug in the double-blind placebo study and you, not only show miraculous improvement (which might destroy your disability case), but leave knowing how to play the violin as well? Okay, that may be a stretch.

Besides what business is it of theirs anyway? When I heard on the TV or the radio that a clinical research study was taking place to test a new drug for the treatment of fibromyalgia, the first thought in my mind was that hopefully it would work and maybe I could fully function again. There was also no guarantee that I would be getting the actual drug - I might get the placebo.

I have participated in two clinical trials for drugs seeking FDA approval for the treatment of fibromyalgia. Both drugs were already on the market as treatment for other medical conditions but were not "officially" FDA approved as a proven fibro-treatment drug. The doctors may have known it helped their patients and may have prescribed it for pain but they could not say it was a treatment for fibromyalgia . They could say they had fibro patients who were taking it for other conditions and reported it helped with their pain.

It's like this - take Avon's Skin-So-Soft bath oil for instance. Everyone has known (since what seems like Biblical times) that Skin-So-Soft repelled mosquitoes but, without spending millions of dollars in some government approved scientific lab for years of testing thus jacking up the price, Avon legally could not make the claim. Now they can.

Anyway, back to the subject of my clinical trial participation...

My first clinical trial was for FDA approval of Xyrem as a medication for the sleep disorder associated with fibromyalgia. The study period was 16 weeks and included four medical exams (of the tender points) by a rheumatologist and four overnight sleep studies.

I had to sign for the "drug" because Xyrem was considered a controlled substance. I also had to assure the clinician (in writing) that I would keep it secured to prevent theft in case my apartment was broken into. So now it was more than a medical problem I was trying to get help for - I could be faced with charges by the DEA for misuse, loss, etc. Clinical trials for drugs are always a federal matter.

As I said, there was no guarantee that I would be receiving the actual drug or placebo. This was a double-blind placebo vs actual drug trial. In a double-blind study, neither the clinician or patient know whether or not the "drug" is the placebo or the actual drug.

Also, there are two parts in the drug testing in the trial.

On your initial visit to the clinic - if you are accepted into the clinical trial you - are given a Palm Pilot. The Palm Pilot beeps indiscriminately signally you that it is time to answer the questionnaires. It can beep once a day or several times a day and you have to take it with you everywhere you go. In the evening you have to send the transmission of the questionnaires to the pharmaceutical company or clinic via the fax modem included with the Palm Pilot.

The "drug" comes sealed in a box with instructions but on plain unlabeled bottles. Each box and bottle have a serial number on them which the clinician records beside your name on your chart. Then you have to sign for the "drug" proving that you have received it. Each time you return to the clinic you are required to bring the "drug" with you in the box and bag you received it plus the Palm Pilot. The clinician checks the bottle to be sure you have followed all instructions and taken the required dosages. If it is the end of the first phase of the trial, you turn in the first package with "drug" and, after close inspection by the clinician, you are given another box with another bottle of the "drug". Still neither you or the clinician knows if it contains the placebo or actual drug. Each visit to the clinic includes a medical exam including blood tests, more questionnaires to fill out or interview with questions. Each visit to the clinic can last between one to two hours.

The four sleep studies included in the Xyrem clinical trial was the main reason I wanted to participate. It is a known fact that there is a sleep disorder associated with fibromyalgia, but due to the cost, most doctors feel that a sleep study is an unnecessary expense that undoubtedly can offer proof of disability. This was documentation I needed for my Social Security Disability claim.

Anyway, at the end of the clinical trial it was discovered that (both times) I was given the placebo. Of the participants who were given the placebo, I was the only one who showed no improvement in sleep. as documented in all four sleep studies. There is no way anyone can bluff their way during sleep monitoring.

The other participants who received the placebo showed improvement giving validation of the placebo effect claim of mind over matter.

I knew I had the placebo both times. Xyrem was used as one of the "date rape" drugs. It did not make me drowsy or disoriented. Many times, in the middle of the night, an hour after taking it, I would walk to CVS and shop. I'm sensitive to meds and haven't been able to drink alcohol in years.

And the results of the sleep study the night of May 18, 2004: Delta stage 3 sleep was 3.8% and stage 4 was 0.8%. Normal for each stage is 10% . I had 2 REM episodes for 18.5 minutes which was 20%, normal is 25%.

I had three other abnormal but worse sleep studies in this trial, all of which I submitted to Social Security in my initial filing for disability in August of 2004. Despite FOUR abnormal sleep studies, I received two denials by the Social Security Administration resulting in homelessness in 2005.

By the way, I was paid a total of $3500.00 for participation.

In 2006, I also had THREE abnormal sleep studies from Metro Hospital in Cleveland and a CPAP was ordered.

Also, in 2006, I participated in another double-blind placebo clinical trial for FDA approval of the drug Milnacipran. I had to leave this trial due to dizziness so severe that I ended up in the emergency room then the Cardiac Ward for three days. It is not known whether or not I had a reaction from the "drug" but I wasn't going to take any more chances. It was discovered by the facility where I was participating in the trial that I was receiving the actual drug. Milnacipran was approved for the treatment of fibromyalgia pain in 2009. Despite the scary side effect, it did relieve my pain. No sleep study was involved by the physical exam, monitoring of the drug and usage of the Palm Pilot to monitor my progress was part of the study. Payment for participation wasn't very lucrative. I received $150.00 for the time I was in the 12 week program.

I was awarded SSDI in August 2007 by an administrative law judge for the myriad of symptoms associated with fibromyalgia - sleep disorder, pain, anxiety, depression; chronic fatigue immune dysfunction syndrome (CFIDS), degenerative discs in my spine, osteoarthritis, etc.

Today on the news there was a segment of another drug approved by the FDA for the treatment of fibromyalgia pain symptoms. I used my "cool camera" to video the segment. I apologize for the sound quality midway and to the end. I must have had my thumb over the mic.

My CFIDS/Fibromyalgia weekend

Living with the pain & fatigue

Damn I'm exhausted; sore (burning and throbbing sore) and those ETs must have visited me while I was asleep in the recliner for 6 hours - the mind is mush. So here I am slumped over my desk - staring vacantly at the monitor, the key board, the wall, my cigarettes. hand eye coordination is awful.

Thoughts coming to mind - click, change the channel; another thought-click change the channel. Staying focused is problematic but I've had more severe bouts with Fibrofog like the year or so when I couldn't read.

Plenty about that in another post - later.

Another thought just came to mind - whatever mind I still have left. I forgot to eat supper Saturday. I guess I'll fix peanut butter toast and a tall glass of chocolate milk - sounds real good!

I feel bruised; beaten. I have a certificate for a free 40 minute massage from a local massotherapist. Finally I found someone to go to here. I haven't had a deep tissue massage in a year since I moved and I miss going to my massotherapist in North Royalton . Massage did far more for pain relief than the drugs.

This week and all the stressors have taken a toll on my anxiety level leading to all the pain.

Did anyone get the number of the bus that hit me? Oops, forgot; not in Cleveland anymore. Back in my hometown of Toronto, Ohio - there has been no public transportation here since 1972.

I have a truck tho'. Gary bought it when we were living in East Cleveland - got it for $500.00. We got more than our very limited money's spent worth out of it so...

Need $600 + to fix it - Transmission! The walking is killing me. I can't believe - dare I say it? - I miss RTA (urine stained cloth seats, having to stand because of kids sitting in the disability seats, etc).

Despite having a disability RTA ID and bus pass, I'm surprised I was able to get a disability seat.
Heading eastbound on the #6 Euclid. Photo by Cindy Miller - 2007

It's been a rough two days - 2 hours of rest for every 15 minutes of housework. I managed to change the bed linen tho'; took me an hour because I stuck with it! I also had to go upstairs to the apartment and get it ready for the new tenant. The timing - despite that I feel like crap - couldn't have been better. We need the cash!

Just standing to wash the dishes is nearly impossible. My feet are a mess from all the walking I had to do just to get around downtown Cleveland before the state approved my disability cash assistance. I have nerve damage too in my legs.

Once my Medicare is straightened out and I am able to find a competent doctor here, I'm requesting assistance to help with the housework - at least three days a week.

I've managed to keep the house in relative good order. I kicked Gary out of the living room and he is spending most of his time in bed. He was trashing the living room and really breaking down my new couch. He can barely walk and besides, the bedroom is closer to the bathroom for him. I don't care if the bedroom gets trashed from all of his meds all over the place.

People ask me how I managed dealing with my illness while homeless.

I had my safe places to go when I left the shelter every morning. Voinovich Park behind the Rock Hall was one place - no one questioned anyone laying down there. Since I had a food stamp card, I could belly up to the salad bar at the market inside of Reserve Square for one salad, pasta, fruit platter to go. I spent the entire day resting along the shore of Lake Erie.

Voinovich Park, Cleveland. This guy is relaxing in my old spot.
Yep, I took this photo and the one below it - 2007

Another safe place that I spent a great deal of my time was at the Northeast Ohio Coalition for the Homeless where I volunteered.

I researched, wrote for "The Homeless Grapevine Newspaper" -when my mind worked but they had a couch and there were certainly plenty of times when I had to nap during the day.

Usually I was beat when I got there. The walk wasn't far from Community Women's Shelter on Payne but sometimes that short walk from E. 22nd Street to 3631 Payne Avenue could take me an hour on a bad fatigue day.

I met Gary while homeless. He and four other guys and one of the guy's girlfriend were all living in a camp near I-90. Another place for me to lie down if needed.

For obvious reasons, thank God those days are behind me now. Despite having a big house and property to maintain, at least I don't have a schedule to deal with. It's nice to be able to lie down whenever I please.

And I most definitely will be making an appointment for my free 40 minute massage Monday morning - even if I have to pay for a cab ride to get there.

In the meantime, I am going to drag myself back (with a heating pad and Tylenol) to my recliner. Time to go back to sleep.

I'll just post this and edit it later when I have more energy and far less pain.

In preparation of offending you...

...please pardon me while I vent

I remember several years ago 'Jungle Lips' (his street name) submitted a poem that was published in "The Homeless Grapevine". One FOUR LETTER WORD in the title of his poem outraged some of the stand operators at Cleveland's West Side Market so much that they threatened action not to permit the sale of "The Homeless Grapevine" on the property, a violation of the Fifth Amendment of The Constitution. Also, the West Side Market is publicly owned and the newspaper vendors have permission to sell the paper on the property.

The news stand at West Side sells "Playboy" and "Hustler". "The Free Times" with it's respectable investigative reports on Cleveland and regional corruption isn't banned because of the ads for sex phone services. Neither is "Scene" but a few vendors had their noses bent out of shape over a word in a poem that they were afraid that some adolescent might see.

Henry Koerner was one of my painting instructors at The Art Institute of Pittsburgh and if anyone enjoyed FOUR LETTER WORDS it definitely was Henry. Being a native of Austria, American (English) profanity was hysterically funny to him because, in his home language THOSE FOUR LETTER WORDS didn't translate; had no meaning. Henry used them proficiently, keeping the class in stitches for 6 hours. He was everyone's favorite teacher; outrageous, eccentric and pure genius. And I am certain John Kennedy, Bobby Kennedy, Spain's Don Juan, Julie Harris among others heard a few F-BOMBS when they were sitting for him for the "Time" magazine covers.

So, keeping this one 'offensive' word in mind; doubting that anyone under the age of consent would ever read my blog (they probably have said THE FOUR LETTER WORD more than three times in any one sentence anyway) and knowing that a majority of people in my age bracket (give or take a decade either way) have seen George Carlin LIVE and own at least one Cheech and Chong album I think everyone can handle THAT FOUR LETTER WORD.

Well, Gary and I have had a bad week too dealing with 'do we or don't we have adequate Medicare coverage' - if we have any at all. We aren't sure and neither is Medicare!

Jungle Lips aimed his frustrations at 'The World'. Whoever wrote this on one of the benches at the RTA Eastbound side at the Tower City station just specified Everybody. I guess if the Rapid is coming and there are security cameras pointed at you, why elaborate?

I have neither the time or the energy to list all of my month's worth of frustrations with the system (and those telemarketing calls too) so I guess the following photo expresses my sentiments towards everyone involved including the manufacturer of all the red tape.

If you care to comment with your own specific list, feel free to do so. Just remember tho' YOU HAVE BEEN WARNED!

Photo by Cindy Miller 2007

Madoff trades his $7 million penthouse for a tiny jail cell

This woman traded in her home for a couch at someone else's house rather than go to a shelter because she owns a dog.

Another casualty of denial for disability benefits by the Social Security Administration, she is diabetic, has osteoarthritis -both conditions affect her ability to walk. Her wheel chair is broken.

She was dropped off on Public Square by the person who lets her sleep on his couch. He told her to panhandle to earn some money for the $120.00 per week he is charging her for rent.

Unlike this woman, Bernie Madoff gets three hots and a cot, recreation, clean clothes, etc. The figures aren't in on how many people will be homeless from his Ponzy Scheme.

Beginning with the Reagan Administration, over $900 billion has been borrowed from the Social Security Administration to fund other projects. This money is yet to be paid back.

Americans paid into Social Security only to have their applications for disability benefits denied. Americans paid Madoff to manage their investments only to find that he squandered away their money.

Only Madoff is being held accountable.

While kids say the darnest things what the adults say is (definitely) dumb (er) (est)

Here are a few things that have been said to me regarding homelessness:

The misconception - the visual didn't fit the stereotypical:

While I was homeless, I was standing outside of Jacobs Field when some nice gentleman offered me an extra ticket to that night's game for free. At the time there was a ban on bringing umbrellas into the ballpark and the possibility for rain was eminent. When entering the gate, anyone entering the ballpark with an umbrella had to take the umbrella and put it in a barrel where it could be retrieved upon leaving.

When I entered the ballpark, I was shown where to leave my umbrella. Because there was no tagging system set up, I expressed my concern about getting my umbrella back after the game.
I told the attendant that I was homeless and I could not afford another umbrella.

"You don't look homeless," he said.

Why? Because I was wearing a nice sweater, new jeans, Reeboks and makeup. Oh, yes! I had a purse that contained a wallet, hairbrush and lipstick.

"Get off your lazy a** and get a job!"
Gary and I were both homeless when we met.

I became homeless due to disability. Gary was an unemployed union carpenter who had his livelihood taken away when his van containing his tools was stolen. He cut back from comprehensive to liability coverage. Homelessness soon followed.

So Gary worked selling hot dogs on Public Square and later accepting assignments through a temp agency.

When Katrina hit Florida, Gary and I saw an opportunity to leave Cleveland and to head south. There were carpentry jobs in Florida. Homes needed repairs, restored and rebuilt. Maybe, once we got down there, maybe someone (like an employer) could deduct the cost of tools out of Gary's paycheck.

Catholic Charities was willing to help us with bus fare to Florida so I called my cousin in Ft. Lauderdale to ask him if he could put us up for two weeks; even if it was in his garage.

Then I told him that we were homeless. And his reply was...

You've lost your right to choose...
That's exactly what happens when you become homeless.

Remember your last move? You checked out the neighborhood; the schools, travel time to and from work, where to shop. Oh, must find out what the neighbors are because that (you think) will affect your property and resale values of your home.

Well folks, homeless shelters aren't located in nice suburban neighborhoods. The person in the next bunk might just be a convicted sex offender just released from prison or a schizophrenic who lacks their medication.

So, when I told a cousin that I planned on going to the homeless shelters in Steubenville to research homelessness for a story that I was going to write on homeless in small towns and rural areas she said, "You shouldn't do that, they (shelters) are in bad neighborhoods".

WELL, DUH -like I didn't know!

Let's Begin Shall We?

I began construction on this blog in 2007, less than a month after being approved by the administrative law judge for Social Security Disability. So much has happened and so much time has passed since starting to layout this blog.

Much time, energy, blood, sweat and tears have been spent to get to where I am today.

Contained on this blog will be the telling of my story of my life experience. The career I busted my ass for. The illness I fought to overcome. The discrimination I faced and tried to fight in the workplace to keep my job and prevent my health from deteriorating further. The job loss that a simple accommodation at work could have prevented. My eviction from my apartment of ten years. My time spent homeless in Cleveland, Ohio and the events leading to owning my first home.

So, let's begin, shall we?