More bureaucratic red tape

It's driving me mad; making me crazy!

I'm grabbing at my head about to pull my hair out and am close to losing my freaking mind over crap.

No, let me just call a spade a spade; it's not crap, it's BULLSHIT! I'm up to my lower lip in it.

I'm being clothes-lined by bureaucratic red tape. It's strangling me!

Am I PISSED OFF? Sure I am and I think rightfully so! Read on...

I'm dealing with Medicare and am not sure if I have coverage; but I have been paying into it for a year to the tune of approximately $96.00 a month automatically deducted from my monthly Social Security Disability payment. That's $1152.00 and I might not be covered. Or am I? Gary found out that the State of Ohio is also paying my monthly payment of $96.00 - a surprise to him and me and to Rita, our caseworker at Job and Family Services in Steubenville.

So let's do the math - a TOTAL OF $2304.00 is being paid into Medicare FOR ME and BY ME!

So there is some sort of double-dipping here and I can't go to a doctor and get the medical care I require due to all the uncertainty. I haven't been to a regular medical doctor, a rheumatologist, or pulmonary doctor for one year.

Before my Social Security Disability was approved I was receiving Medicaid which paid for everything medical that I needed - doctors, physical therapy, procedures (MRI, mammograms, colonoscopy, ER, hospitalizations, pulmonary care, sleep studies, etc. and prescriptions). You name it, it was paid for and there were no co-pays, no spend-downs, no deductibles - no worries!

MEDICAID IS UNIVERSAL HEALTH CARE reserved for the poor and primarily for those who have no or very little monthly income and, in my case, waiting for Social Security Disability. Medicaid wasn't easy for me to get. Caseworkers are unwilling to divulge that it and many other benefits are available - that's just too much paperwork.

Many of the homeless who are waiting for their disability benefits are not aware they are eligible for disability cash assistance ($115.00 per month in Ohio), food stamps ($162.00 maximum benefit per person per month in Ohio) and Medicaid insurance. Many homeless do not have proper identification to get the benefits they deserve.

Many are misinformed by their caseworkers, as I was, but I fought - it was the third caseworker (in Cleveland) who put forth the effort in getting me my benefits. She got me back benefits too! By listening to me and putting forth an effort she found my original appointment information in the system. That appointment was from before I became homeless. I was unable to get back because the location where I applied was in a different part of town - I was without money for bus fare. End result was back payments totaling close to $700.00.

One thing this caseworker told me was that there are plenty of benefits available for the poor and homeless but, unless the applicant requests help from a specific program, caseworkers are not permitted to divulge information to the client.

The smokescreen in trying to get benefits is thick. Many of the poor and homeless accept "no you are not eligible" and give up; don't put up a fight. Many are sick and getting sicker; no energy to fight the system while health is failing.

Homelessness affects one's health - it ages a person cutting years off a person's life. I see how badly I look every time I look in the mirror - I look awful and I feel worse every day. The stress is killing me!

NEWSFLASH: 11:30 a. m. Monday - Rita from the Steubenville office of Jefferson County Department of Job and Family Services just called. She took the time to delve further into my file and found out that the State of Ohio is not paying my Medicare premium as previously reported. Oh, what should I believe anymore?

I do appreciate Rita though; she is kind and wishes she could do more to help but her hands are tied too. Benefits are determined by income and she has to go by the guidelines imposed by government.

I just opened my mail from Job and Family Services. Now it's in writing that I was denied for State of Ohio paid "QUALIFIED MEDICARE BENEFICIARY (QMB)" Reason: INCOME REPORTED EXCEEDS THE PROGRAM ELIGIBILITY STANDARDS. We based this action on OHIO ADMINISTRATIVE CODE, Rule 07431."

Okay, it's in writing and HELL I KNEW THIS SO WHY ALL THE CONFUSION?

Poverty is by design; it's control over the masses, the gigantic thumb pushing forcefully down on the poor holding them there, making people sick-keeping them sick. It's a vicious cycle; the dog chases its tail and will never get hold of it.

In May, Social Security Disability and SSI recipients will get a one time payment of $250.00 in addition to the monthly benefit check. Food stamp recipients will receive an additional 13% in allotment per month (which boils down to an additional box of Kraft Macaroni and Cheese in the shopping cart). WOW, HOW GENEROUS!

Brian Davis, Executive Director of the Northeast Ohio Coalition for the Homeless, feels that "The Obama Administration championed the extra $250 that everyone on disability will be receiving in the next month. Some might think that this is a positive, but I view it more as an insult and results in a lowering of their grade. I mean, these individuals have to figure out how to live on a small amount of money, and now the government is sending them a few coins to go out and spend. How about an increase in the disability check every month so that these Americans are not doomed to poverty for the rest of their lives?"

I am in total agreement with Mr. Davis!

Sure Gary and I are both eligible for that extra $250.00 and are looking forward to that measly one time payment. But we both have a major fight on our hands and that is to see to it that we have more than adequate health care coverage, to be able to get medical treatment and our prescriptions with out having doctors offices calling us and canceling our appointments because we are not in the system.

I have some phone calls to make and will be on the phone for hours trying to get this Medicare issue resolved. My prescription coverage was dropped because I signed up for a PPO rather than an HMO so the state won't pay for my prescription coverage.

When that extra $250.00 comes I might have to give my neighbor a few bucks of it so she can pick up a case of industrial strength butt lube with aloe for me at Cosco.

The fight continues for Gary and me as our health is dramatically failing!

And yes - I'm rather punchy at the moment!

More on President Obama's News Conference

Northeast Ohio Coalition for the Homeless comments

Brian Davis, Executive Director of NEOCH offers his viewpoint here.

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.

Happenings on the home front

I definitely have something to say about...

Why did Nationwide quit being on my side? - In the final planning stages of buying my home, I had to arrange for homeowner’s insurance. I chose to go with Nationwide Insurance and catching up with my former agent (Dick).

WELLLLLLLLLLL, my homeowner’s payment is finally due (after one year of home ownership - yea!) so I called Dick’s office and asked when am I getting my bill? Seems like my policy was going to expire at midnight March 19 (last night) with denial of renewal BECAUUUUUUUUSE of repairs not being done (as requested by Nationwide) on my house and patio. Nationwide was dropping me!

Well, it’s a good thing I called because I DIDN’T GET THE MEMO ON THIS!!!!!

My agent is a cool dude; it’s not his fault. He just writes policies and it is not his job to police unless one of his clients calls with a complaint.

Twice last year I got notices in the mail from Nationwide that a company inspector was snooping around on my property (without me being aware of it) and wrote up items that were considered hazards. The letter stated that the repairs were to be made by a certain date or risk cancellation of my policy.

I have absolutely no idea how this woman managed to come onto my property without being noticed. There was quite a bit of activity and plenty of people on the premises; all who never saw her.

Gary and I knew what needed done to the house and we made up a ‘to do’ list. Interior was on the higher priority with exterior on the lower priority list.

On the lower priority list: the outside staircase leading to the upstairs apartment had a loose handrail; rusted - simple fix requiring a bracket. We had it fixed; the agent came out and took a picture and e-mailed it to Nationwide.

That isn’t what the inspector wanted fixed; it was another railing - a cosmetic repair was what she was concerned about so we fixed that.

Then she slithered onto the property again; when? - we don’t know because, once again, no one saw her. “The structural integrity is compromised” on where the patio roof is attached to the garage so either replace or repair before March 2009 or risk cancellation of the homeowner’s policy. It was chipped paint from small leaks in the roof.

Dick happened to stop by to take a picture of the final repair to the staircase and I showed him the letter about the patio - the letter came in the mail that day but we had already repaired the roof. Dick inspected what this woman claimed was wrong and he saw nothing structurally threatening.

I’ve never had problems with them in the past but I definitely have problems with someone trespassing on my property. Maybe I didn’t get the letter prior to these inspections but, what excuse does this inspector have for not knocking on our door and announcing her presence?

I have been reinstated but I am considering dropping Nationwide like a bomb on a Nevada atomic test site.

The calls to 1-900-HOT BABE - My house has an apartment upstairs that I rent out to construction workers that come into the area to work at the First Energy power plant 3 miles north of us. It helps pay the bills for all the work that the house needs plus the mortgage.

That's the good thing.

The apartment is completely furnished with utilities included plus a washer/dryer combo. bed linen, dishes, cookware, basic cable, 19" color TV with VCR/DVD combo - all the comforts of home. It's sweet! Most of the guys who have been tenants have been very respectful of my property.

Since Gary was once a "road warrior" in his days as a union carpenter, he had the 'brilliant' idea to provide unlimited local and long distance service for upstairs. We have a package deal of two lines plus high speed DSL at a sweet price.

Well, we got a phone bill after one of the tenants left for $679.00 for a total of 9 phone calls (all the same night) to two different 'date' lines. We now have a block on the upstairs phone - live and learn. We thought that charges to 900 numbers would require a major credit card. Apparently not.

I was able to track down the former tenant and he has paid $500.00 so far towards the phone bill.

If this would have happened 35 years ago, I could have given him directions to the Modern Spa in Steubenville where he could have 'bundled' the hand-jive with add-ons for about $150.00. Inflated times we are living in now!!!!

'Ole Bessie' will be running soon! - That truck Gary found for us in East Cleveland for $500.00 has been sitting on the pad since a few days before Christmas. The transmission - dead; and I was 10 miles from home when it happened. Had to get the truck towed.

The nice Steubenville cop who made the call for me is the son of one of my high school teachers. He was just just a little boy when his dad was vice-principal and my sociology teacher.

The cop went to college at the University of Akron where he majored in business. He did the corporate thing and said being a cop was less stressful.

Anyway, we got another tenant upstairs (after nearly a two month vacancy) so the trany has been pulled and another one will be installed next week.

You need to get out more often! - When I graduated from art school, I had to leave the area to get a job in commercial art - the jobs weren't here. Going to school in Pittsburgh exposed me to a variety of cultures -nationalities, races, religions - that weren't prevalent here.

Now remember this as you read on - Pittsburgh is only 40 miles away but like it might as well be another planet.

My friend Joanna and I were discussing this in the grocery store one day (I was ranting about the inavailablity of some of my favorite pantry staples) plus, since we both had been away for thirty or more years, we know what the 'real world' out there is like.

Joanna and I are alike - both rebels - and we like progress and we just feel that too many people 'here' are just too set in their ways. Joanna (a former member of the MET Opera chorus) feels that everyone, upon graduation from high school should be required to leave town - or the valley - for 5 or so years to experience life in the real world. I agree.

Anyway, I have a new tenant who works for the county and yesterday we were having conversation and I said that one thing I miss is the cultural diversity that living in a metropolitan area offers. He asked what I meant so I told him about the people I met and the friends that I made.

"Are your Muslim friends radical?" he asked.

My one friend Kemal is a Cleveland RTA bus driver, born in the Bronx and is a Yankees fan. Whenever he spotted me walking, he used to slow down, open the door and yell, "The Tribe Sucks!" I dunno - is that radical? Nope, just a New Yorker.

Jack Scalia said to me, "The Tribe Sucks!" but I guess that's okay - he's Sicilian; from Brooklyn - and a Yankees fan. He just doesn't drive for RTA.

When my tenant started to talk about my friends' religion, I was so very tempted to suggest the book that my friend Sam recommends - "Islam for Dummies" but I have the feeling this guy would have thought this would have been my attempt of insulting him. I doubt he knows about the " for Dummies" series of books.

Ok, maybe I am being snarky.

Then my tenant asked, "You're not a LIBERAL, are you?"

Let's see - I'm a registered Democrat but don't necessarily vote a straight ticket; it all depends on the issue at hand and......

Maybe I'm confused but would like to think that - with my forever shorting out frontal lobe - I don't have a small mind, a liberal mind or a conservative mind; I just know it's one that doesn't always work well.

Just pay your rent on time, Pal. That's all I'm concerned about.

And yes, I am being snarky.

My little Guardian Angel - All Goldie really has to worry about is Mommy - is Mommy going to get me some tuna? Is Mommy going to fill my dry food bowl (it's Fiestaware and he deserves the finest oven safe stoneware).

My best boy walked me to and from the store the other night. He waited for me outside.

He's taking his nap now - I just took this picture of him.

Lucky little guy.

Why go postal? Go Karma!

It has it's own sweet revenge!

From Wikipedia: Going postal is an American English slang term, used as a verb meaning to suddenly become extremely and uncontrollably angry, possibly to the point of violence. The term derives from a series of incidents from 1983 onward in which United States Postal Service (USPS) workers shot and killed managers, fellow workers, and members of the police or general public.

I had lost count many years ago the number of times the term ‘Going postal’ was topic of conversation during breaks, lunch, during and after work at social events amongst co-workers and myself.

At one job in the late 1990s a coworker of mine offhandedly asked me, “If going postal means shooting up the workplace at a post office, what would shooting and killing co-workers at a printing company be called?”

My answer, “Graphic violence!”

Although neither I or my friends and former associates in printdom know of any incident of a mass murder rampage (slash) suicide ever happening in a commercial printing company, many of us can fully understand why these things happen in the workplace.

Working in advertising and commercial printing is stressful and highly competitive. There are deadlines that must be met, every facet of production has to run on schedule and there is absolutely no margin of error. Clients pay big bucks for us to produce a product that represents their image favorably. Press time is a valuable commodity that must be started up for each job on schedule.

In newspaper or magazine production, a space is held waiting for the ad to come in by a deadline date. The same is true in commercial printing where press time is reserved. Miss the deadline and the client risks paying an additional charge of $800.00 or more an hour for staging, prepress and press idle time. And God forbid if a press breaks down and the job has to be moved to another press or farmed out to another company. We barely had enough time to get the job ready for press the first time, even if the job came in on schedule. Now we have to make time to rework the darn thing.

Talk about stress!

The fast paced demands of the commercial printing industry could be exciting and physically draining but not to the extreme point of pushing someone past the brink. We had other means of shaking off a bad night at work - the bar - from 8 a.m. till 3 p.m. and we pounded down a lot too; while shooting pool, playing darts. Friday morning bowling league was great for working off the tension of a bad night - while drinking, of course!

It’s not the work itself - it’s the (mis)management; the blame maker; the incompetent bullying taskmaster at the job!

Quite frankly, my friends and former associates can relate to the incidents committed by postal workers pushed beyond the emotional breaking point, however we do question why they (the postal worker), or for that matter, any disgrundled worker has to take out so many people on the way to Mr. Bossman’s office. After all, chances are that some times; many times they had to deal with his crap too.

Yeah we’ve all discussed it; we’ve all figured who might get theirs eventually. We’ve even tried to pinpoint who in the department might become unhinged enough to do the deed and we all pledged to come to that person’s defense in court, if need be. We even had an agreement that, should it be any one of us, remember who the target is and keep our co-workers out of it-we’ve all suffered enough.

So where is this all leading to?

It leads to that one incompetent, cowardly bastard (along with his accomplices) whose actions may have been the catalyst; the finger on the trigger that set my endocrine system awry; the beginning of my decline in good health that I enjoyed for so many years - the one who nearly caused me to have a nervous breakdown; keeping me in a chronic state of adult anxiety.

It was 1994 when I heard about a job opening at the Berea, Ohio printing facility of a large, well-known downtown Cleveland, Ohio publishing company. I was working for a commercial printer in Twinsburg, Ohio at the time and was very unhappy working the day shift. I felt that the midnight shift job in Berea provided, not only the opportunity to leave but, (naturally being a night owl) working the shift of my preference.

About two weeks after applying, I was called to come in for a skills test after work. I was told to meet with John, the second shift prepress supervisor. He would be the one to test me.

Without going into detail regarding the technical aspects of the skills test, John checked my work and told me that the quality of my work was the best of all the people he submitted the test to and that he was going to recommend me for the position. After giving a two-week notice, I started the job in Berea; eventually moving there in 1995.

The job was going great for me and I really liked working there. Several of my friends applied for and got jobs there. I would never suggest to friends to apply at a known hell hole.

Just short of being there a year the problems started.

John accused me of making mistakes that required re-doing my work. I asked him to show me what it was that I did wrong but he couldn’t produce proof.

Soon the mistakes became a weekly occurance, then a nightly occurance yet John could not produce evidence.

My anxiety overwhelmed me; I started having problems sleeping. I couldn’t figure out how I could be making so many mistakes; I did not have a reputation for making mistakes. I had a letter of recommendation from a former department supervisor that clearly stated that I was “meticulous” and had “a keen eye for detail”, so why was I making so many mistakes and WHY wasn’t John able to produce the evidence so that I could correct whatever I was doing wrong?

And there were those constant threats that I better straighten up regarding the errors or face displinary action such as a two-week suspension without pay or being fired.

My doctor wrote a letter on my behalf requesting that my shift start time be changed to 1 a.m. so that I didn’t have to deal with John (he usually left work at that time). Still, he would stay over until I came in so he could tell me about the mistakes that I was making; that too much of my work had to be torn down and restripped. He said that some of the jobs went up on the press wrong and the company was losing valuable press running time, thus costing money.

Finally, John produced the evidence that I had been asking for. He showed me a photocopy of the film ( I ) stripped before it was torn down and restripped. The photocopies weren’t clear because negatives could not be photocopied clearly. He also had the corrected negative taped to the mylar carrier. I checked the label on the mylar carrier that the film was secured to. It was initialed by the original stripper who worked on that particular page. It was initialed CM.

But wait a minute...CM? I don’t initial anything CM and none of the writing on the label was mine.

I told John that was not my writing or my initials. He was insistant that I initialed the job and he would not accept that.

We argued for several minutes over this. I initial everything CDM - for my first, middle and last name-period; and I circle my initials too! Always have; always will.

At the end of my shift, I had to meet with Department Manager Vince V. who told me that he had no choice but to suspend me for two weeks without pay for costly mistakes.

Although going without two weeks of pay would be a financial hardship, I had hoped that I could get my nerves calmed down in that time.

One Sunday night I went into work and began to have problems with lightheadedness; I couldn’t think.

The floors were being stripped and waxed; my department had been finished several hours earlier but the chemical smell lingered. It was disorienting me. (I am still sensitive to chemical smells and MCS is often a componite of fibromyalgia and CFIDS).

The lead person on my shift was Tim M.; a part-time fireman and EMT in Amherst. I went to him and told him I was having problems; or tried to. I was conscious of my surroundings, somewhat coherent but spaced. I felt like I was coming out of a drug induced sleep; feeling much like I was under the influence of sodium-pentethol. I was trying to get help from Tim; I couldn’t think on my own. I needed to go to the hospital but could not convey that to him. I don’t understand why, being an EMT, he did not recognize this.

I tried to work. I started to make mistakes; I corrected them. I made more mistakes; I corrected them. I remember struggling to think and not feeling confident in what I was working on. I was exposed to toxic chemicals at work again and once again I lost my ability to function.

(I've had several exposures to toxic chemicals in my 25 year career).

Now some (still not all) of the mistakes were mine.

My doctor took me out of work for three months. I had to leave work often due to the continuous outgasing from the chemicals; even weeks later.

Meanwhile my best friend Debby, who had started at the company upon my recommendation, had suggested that I make an appointment with a rheumetologist that her sister was going to. Debby was quite aware of the problems I was having with anxiety, sleep and the beginning of depression symptoms and felt that I might have what her sister was diagnosed with; fibromyalgia. (I will write more about how my diagnosis for fibromyalgia was made in a future posting).

I received a letter from the company asking me when I could return to work. In the letter, they stated that they would have to fill my position if I did not return soon.

Although I didn't feel ready mentally and physically ready to return, I convinced my doctor to release me from sick leave despite his objections. He signed the release papers.

I telephoned the HR Director and told her that my doctor was releasing me to come back to work. The next day, I took the release to the HR Director and was asked to wait in the lobby. About ten minutes passed and then I heard various names announced over the intercom - the company president Bob M., the plant manager, the department manager Vince V., second-shift supervisor and my immediate boss John H. - all called to the conference room.

I knew immediately, I was set up.

Then I was escorted in. The HR Director, her assistant and a secretary (to document the meeting) were also present.

Needless to say; I was let go. The president of the company said that I wasn’t fired - I was being laid off. He said that the company would not dispute unemployment compensation and that I was welcome to apply for any future openings that I was qualified for within the company.

I did apply for an advertised opening in my former pre-press department and was not granted an interview.

I filed with the EEOC a discrimination complaint against the company. During the EEOC investigation, they could not find evidence to support my claim.

After my dismissal, two subsequent charges of sexual harassment were filed with the EEOC against the company. One of the charges, filed January 22, 1997 in U.S. District Court in Cleveland was settled out of court, in favor of the victim, for an undisclosed amount in damages The other victim, in a separate incident of sexual harassment, was awarded a settlement (by jury) in excess of $800,000. The company appealed but, unfortunately, the victim financially could not pursue the case. Both cases were high profile; publicized by Cleveland print and television media!

Years later - after my symptoms worsened, I could no longer work and had filed for Social Security Disability - I ran into a former employee of this company at the library in Berea.

Debbie S., a department manager who had been fired by the company after the sexual harassment jury trial, had been instructed to falsify testimonial documents regarding that particular lawsuit against the company.

Debbie S. told me that she had come to my defense regarding the mistakes that I was accused of making. She showed my shift-supervisor, the department manager and the plant manager writing comparisons between the labels initialed MC and mine which were initialed CDM.

She also told them who MC was. His name was Mike C. and he initialed all of his work with his last name initial first (the C) and his first name initial last (the M).

Mike C. had been at the company for nearly 20 years; was well liked - one of the boys.

Debbie S. said that a comment was made that, since they (the spine-less bastards!) had made the mistake of accusing me, they felt they should continue the charade rather than risk being sued. All of this was on the advice of Russ H., the head of HR at the downtown Cleveland corporate office, and corporate attorneys. The reason why I was laid off rather than fired; the reason why my unemployment claim was not going to be disputed.

However, I believe in Karma.

You see, John H., my shift-supervisor - my immediate boss, had gone on sick leave for anxiety and was very close to a breakdown. After several months on sick leave he was advised to return to work or his position would be filled. He returned and was dismissed!

Here’s is an interesting note about John H. - he was given his supervisory position because - he made too many mistakes when he was a four-color stripper!

In 2006, the company was sold to a Chicago-based printing and publishing company (the largest in the United States) and the Berea facility was closed.

It is believed (in all faiths: all cultures) that, when close to death (NDE) or at the actual time of death, each and every one of us will experience a panoramic life review. I wonder what it will be like for my accusers who were at this particular printing/publishing company?

There is no need to resort to violence - just be patient. What goes around, comes around.

Karma is a good thing. Wait for it. Enjoy the gratification of it!

End

By the way, I DO NOT endorse violence in the workplace!

Please feel free to comment. I would love to hear what you have to say about TOXIC BOSSES!


Oh, Yes! Here are some links you may enjoy:

How to protest at work the French way - take your boss hostage

Boss Bitching: Tyrant Boss Types

AND WE MUST NOT FORGET THE QUEEN OF MEAN. She has had her panoramic life review & she won't be back.

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.

Do you want 30# single or double ply?

It's BYOP in Mt. Gilead
I've always had a problem with self-serve anything - unless it's a buffet restaurant, of course!

Self-serve is supposed to be a time saver for the customer - hey, no waiting in long lines, right?

But yet, your (and my) valuable time is often wasted by trying to figure out how to operate the 'ugly cashier', having to scan your own items, listening to those annoying digitally recorded reminders of "please place your item in the bag", and more often than not having to wait on assistance.

Is self-serve cost effective? For the store - yes; for the customer - no!

Do you honestly think you are saving any money for DIY? At Aldi - by bagging your own - definitely. Kroger? Giant Eagle? NO WAY!

The same goes for shoes!

Self-serve - looking at all those boxes, trying to find the one that contains a pair like the one style on display. My dogs are tired, they ache-throb. I can't stand for more than 10 minutes. Kohl's vs Macy's? I'll take Macy's, thank you - to be waited on for the same price as those same shoes at Kohl's. Besides, as long as I buy my shoes at a store that provides customer service, I'm helping to keep someone employed. And it's very nice to have someone to lace the shoes, bend and stretch it and help me glide that swollen burning foot in ever so smoothly with a cool shoe horn.

Everybody is trying to save a buck.

The libraries are charging a dime per copy-understandable due to waste by patrons. If you are going to the East Cleveland Library you can provide your own paper or buy it by the sheet at the front desk at no additional charge for toner. A great deal over paying per sheet. And being on a limited monthly income, I need to find a deal on anything.

Fortunately I have my own computer now, and the cost of ink is killing me financially.

But this story has got to take the cake. Read on...

Ohio court will take your case if you supply paper

Sat Mar 14, 2:47 pm ET

MOUNT GILEAD, Ohio – An Ohio city court says it will only accept new case filings from people who bring their own paper.

Judge Lee McClelland of Morrow County Municipal Court in north-central Ohio says the court has just enough paper to handle hearing notices and other documents for pending cases.

McClelland says the court will stop accepting case filings Monday because it cannot afford to reorder more paper. He told "The Columbus Dispatch" that the county still hasn't paid the bill for basic supplies the court ordered in November.

McClelland says several county agencies have volunteered to provide paper to handle their own filings.

The Morrow County prosecutor declined to comment on the new filing rules.

So, the next time you plan to drive into Morrow County,Ohio be prepared in case you might need to visit a rest area.

By the way, I get mine at Family Dollar or Dollar General at $5 for a 12-pack double ply. It's quilted!

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.

The isolation of leaving behind homelessness...

...and why some return to the streets.

When you become homeless you exchange one community for another.

The community you leave is your neighborhood - once stable housing; the people next door, the people across the street. You might wave to them everyday; they might wave back.

Life in the neighborhood isn't like it was years ago. Back then you knew your neighbors quite well. Neighbors were your extended family. When I was a kid, you hoped that your neighbor didn't see you doing something your parents told you not to do. Believe me, they knew what you were allowed and not allowed to do and they had your parents' blessing to reprimand you for it. If that wasn't enough, you knew you were going to "get it" from Mom or Dad too!

Neighbors were there to help. Neighbors watched out for one another.

Nowadays everyone is too busy to socialize. Mostly, you don't even know your neighbor's name.

The homeless have a community too; much like how life was in the neighborhood back before everyone was too busy to know one another. In the homeless community you make new friends, you see each other on the street, enjoy great conversation, you know each other's names and you help one another too. Want to find a meal site? Where to get free stuff? Ask a homeless person.

Things soon change once you get placed into housing. Sure you now have a place to call your own - if vouchers are available you get furniture, perhaps a TV, cookware - all the necessities.

Most likely, your rent payments are subsidized; based on income and your utilities are included. But with this good thing that you have received; that you have waited for to better your life. Getting into housing may mean, for some, isolation from the community that you've become accustomed to.

I faced this isolation like so many others leaving homelessness for that subsidized apartment.

What many don't know is that the disabled can get into housing quickly - for me it was 6 or 7 months.

The problems that the disabled face when getting into housing:

• The housing may not be near stores, especially the supermarkets. You have food stamps but any financial assistance such as state disability ($115 mo. in Ohio) or SSI/SSDI may not have come through for you yet. No money means no way to get to the stores. Now you are house bound; isolated. What makes matters worse is that you don't have a phone either.
  
• Once you are placed into housing you are off your caseworker's books. There is no follow up; no additional help - they have washed their hands of you. If they are a good caseworker, they have hooked you up with services but more than likely they haven't.
• You might not have been placed into a good, safe building - just a building that will accept you and doesn't care about your credit rating. Having people knocking on your doors 24/7 wanting something is not fun (they aren't the disabled formerly homeless - they are crackheads!). Walking down 12 flights of stairs because the elevators haven't run for a week isn't fun either! And it's not a good idea to leave your apartment after 9 p.m.; you might be stabbed, robbed or raped in a stairwell or elevator. Zip code 44114 is much safer; despite the 130 plus sex offenders in that neighborhood.

What all this boils down to is why the formerly homeless return to the streets.

The Homeless Guy: Mile Stone
The above link is to Kevin Barbieux, The Homeless Guy who offers more insight about getting an apartment and his struggles with living there. I suggest his blog - bookmark it. It's a good read.

WHO IS Diana Dennis... and why is she writing terrible things?

What she witnessed; what she experienced at the shelter

Diana Dennis was a resident of Community Women's Shelter for approximately 7 months in 2005. Other residents and a few of the staff members (only the ones with compassion) confided in her and she personally observed and noted various civil rights violations against the women who were sheltered there.

Diana Dennis reported her observations to Brian Davis, Executive Director of the Northeast Ohio Coalition for the Homeless who encouraged her to write commentaries about the conditions at the shelter for NEOCH's street newspaper "The Homeless Grapevine".

A Fly on the Wall, a four-part series of published commentary writings by Diana Dennis was about many of her own and other residents' experiences at the shelter.

In writing about her own personal experiences, Diana wrote in the third person for fear of retaliation, something many of the women at the shelter also feared. Often, she did not write about things that only she had witnessed. Some of what staff members told her were not published either - to protect them as well.

Only the first part of the A Fly on the Wall series is posted online in "The Homeless Grapevine" archives. The rest of the series was removed from the archives as part of an agreement in negotiating corrective resolutions between NEOCH and the shelter provider.

One of my duties as a volunteer at the Northeast Ohio Coalition for the Homeless, was to archive past issues of "The Homeless Grapevine". Because of having archived many of the past issues, I found a copy of Diana Dennis' draft of the fourth installment of the A Fly on the Wall series.

Due to the agreement between NEOCH and the shelter provider, I have taken the liberty to omit the name of the Executive Director of the agency that ran Community Women's Shelter.

To read Part One of the A Fly on the Wall series click here.

The following is the rough draft from Part Four of A Fly on the Wall. Diana's personal experiences are in bold italic.

A Fly on the Wall - Final in a series of four commentaries by Diana Dennis. Written December 2005.
Blustery weather with frigid temperatures and wind chill factors of minus 1 degree have beset the City of Cleveland. Nonetheless, the women and children who reside at Community Women's Shelter on Payne Avenue go unprotected from the brutal cold.

Supper is served between 5:30 and 6:30 p.m. Monday through Friday with weekend serving time beginning at 6 p.m. After dinner is served, residents volunteer to clean up after the meal by stacking chairs, wiping down the tables and mopping the floors. The sooner these tasks of cleaning are accomplished, the sooner the residents can re-enter the Community Room dining area to wait for the rooms to be opened at 7 p.m.

Because of the size of the facility, the residents (women and sometimes children) have no other place to stand and wait other than a narrow hallway leading back past the bathroom in Building #1, the small entrance foyer or the outside of the building. Not all residents can fit in the small contained areas and many have to stand outside in the elements-whether it be in rain, hail, thunderstorms with lightning or a blizzard with deadly cold temperature.

Community Women's Shelter is NOT a safe haven for children and if a parent willfully exposed a child to the elements, the parent would likely be charged with child endangerment. In this case, the shelter is negligent by standing firm on its policy of not permitting residents to go to their rooms early as protection for the inclement weather. Common sense or a kind heart doesn't prevail over policy.

Many of the residents (myself included) now suffer from bronchitis and use inhalers to aid in breathing. In speaking with residents who have since left CWS and presently have found housing, the symptoms of respiratory distress left within several days of being away fromthe shelter. Most of us did not have breathing problems prior to entering the shelter.

Most of the time, the temperatures in the dormitory areas are inconsistant with the weather conditions outside. Air conditioning runs when the outside temperature drops into the 40s and the heat runs when the temperature exceeds 70 degrees.

Many women in Building #2 (above Care Alliance) suffer from high blood pressure, respiratory conditions such as asthma and heart conditions. Three rooms in this building lack windows and these women suffer as a result of lack of means to properly ventilate their rooms when the thermostat reading is 83 degrees and the furnace is running. Some have been sent to the ER by ambulance or hospitalized as a result.

Residents do not have enough blankets to keep warm.

Linen (two wash cloths, two towels, two blankets, two sheets and one pillow case are assigned to each resident once a week during linen exchange. The blankets are very thin (summer blankets) and offer very little warmth when the temperature in the dorms falls below 60 degrees, which is often the case.

Policy once again dictates. No personal blankets. Although some women do have their own personal blankets (many of them learned to crochet while at the shelter), some of the women (myself included) had their personal belongings thrown out during a sweep by staff in November.

Many residents returned to their rooms at 7 p.m. only to find clothing, personal bed linen and even important documents gone from their sleeping quarters and thrown into the dumpster. Some residents filed police reports of theft against the shelter. Others tried retrieving their belongings from the dumpster only to be threatened with arrest. A group of women filed grievances and met with the Client Rights Officer, all to no avail.

One woman. who has since left the shelter, was able to get her important documents retrieved by the second-shift program director only to later be threatened by the same manager for bragging to others that she got her paperwork back. The shelter resident was told by the program manager that, because she (supposedly) bragged, she (the manager) would be watching her closely and she (the resident) better not slip up or she would be put out of the shelter.

Various threats of arrests continue at CWS; two instances involved residents in Building #2.

One resident in Building #2 was falsely accused of stealing another resident's socks and was threatened with arrest. She later was apologized to by staff which offered her little solace form the embarrassment and emotional trauma she was put through.

Another woman was having breathing problems due to the excessive temperature from the heat. The thermostat reading was 83 degrees. Because her bunk was beside the baseboard heater causing the bunk to act as a conductor, making the temperature seem higher, she requested to go outside for fresh air.

The male coordinator, working the night shift came out of the main building (#1), ordering her into the Community Room rather than allowing her to return to her room. He did not believe her explanation that she had permission to be outside due to the heat and its affect on her blood pressure.

While trying to explain to the night security officer why she was outside and that now she needed to go to the ER, the security officer accused her of lying and ordered her into the Community Room. An ambulance was called for the resident and hospital records prove that she was put in further distress from the anxiety of this incident-from which she received NO APOLOGY.

The three paragraphs above are about Diana Dennis' personal experience.

So who was Diana Dennis?

I was Diana Dennis and I will go into complete detail about my experience at Community Women's Shelter in a later post.

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!

Photo: AHHHHHHHHHHHHHHHHH!

Photo by Cynthia Miller - 2007
3631 Perkins Ave. - Cleveland, Ohio

It was 68 degrees Friday. Think Spring!
Don't forget to turn your clocks ahead this weekend.

Visits by extraterrestrials...

...if you're asleep, is there still that sucking noise?

My sleep has been totally screwed up my entire life. That's why I chose to work midnight shift - I had great difficulty functioning at a day job.

I struggled to sleep at night; fell asleep a lot in class in high school (although I was never caught). I can no longer enjoy going to a movie theater because I fall asleep, staying awake at meetings, lectures, etc. is virtually impossible. Baseball games? I'm walking around at the top of the innings; watching the game in my paid seating at the bottom of the inning when the Indians come to bat.

I fell asleep at work a lot at my last job; standing, while cutting film with X-acto knife or razor blade in hand. Happened after they had moved me to day shift. That's when the 'fit hit the shan'!

I suffer from short term memory loss. I remember a lot of things from when I was 6 months old - being baptized, the taking of the group picture at the Miller Family Reunion in 1956. I remember being potty trained, watching the first-run televised original "Mickey Mouse Club" from my playpen (how in love I was with Cubby O'Brien), the day my dad tried to sneak it out of the house to throw it away (how I carried on!).

I remember events in my friends lives that they don't remember.

But don't come up to me on the street or at a class reunion and say, "Cindy, do you remember me?"

Just give me a few minutes (or twenty) until the electrical transmitters in my brain spark. The circuitry doesn't work too well - sometimes it shorts out.

Often, mentally focusing on any task is problematic whether it be housework, writing a check, talking on the telephone, reading, comprehending, concentrating. If the phone rings while I am cooking it disrupts my thinking.

Something shorts out in my frontal lobe. It's as if someone has a remote in hand, changing the channels but it's all going on in my brain; not the TV. And that humming noise is such a distraction.

Something strange was going on one night while at work in Michigan. A very simple task I had to do that's too technical to explain to anyone who doesn't know prepress. An apprentice could have done it without any problem; for me, a journeyman, it was cake. But let's say I made a major mistake while compositing two films into one film. I checked it, saw the mistake I made and tried to correct it. All I had to do is combine 16 films into 8 films. I wasted 16 pieces of film and 5 hours on what should have taken me two hours at the most. I saw the mistake, knew what I did wrong but my brain and actions were like a broken record; skipping, repeating.

Years later, I lost my ability to read, to distinguish color, became dyslexic, lost my hand-eye coordination - yadda, yadda, yadda.

Some days I can wake up and feel fully rested and capable of thinking. Some days I do nothing,; talk to no one other than Goldie or Gary.

Fibromyalgia and Chronic Fatigue syndromes are what I have and both conditions have no clear test marker (just adnormalities) making both conditions difficult to diagnose or to even prove, especially when winning a claim for disability. I have seven abnormal sleep studies. In some, I never hit REM sleep; in others I was in REM stage for less than 15 seconds.

So keeping in mind that there is no cell (like cancer) or any other defined marker has caused me to wonder if possibly(?), sometime in the middle of the night, I am being visited by Greys, Nordics, Reptilians or any number of interplanetary beings. After all there are many well documented encounters-some sightings by law enforcement, some by airline pilots, some by astronauts.

I even saw a triangle in the sky hovering over a corn field near Columbiana, Ohio in 1978, back in the day when Ohio state Rt. 11 was a hot bed for UFO activity from Columbiana all the way to Astabula.

There was even a multiple witness sighting of a craft between my hometown of Toronto and Stratton in October of 2008! Could they possibly know I left Cuyahoga County? Are they looking for me?

The Vatican even believes in ET while many in the medical community dispute the existence of Fibromyalgia or Chronic Fatigue Syndrome (because of the complexity of both conditions, they don't want to acknowledge what they don't know about both -a cop out).

I had an MRI at the Cleveland Clinic. The neurologist said there was something unusual on the MRI.

So, the next time you see me and I seem disoriented - in a fog - unable to concentrate, ask me if my ear hurts. I think that's where they insert the straw. Could that MRI possibly offer validation?

Top photo: HEY THERE! HI THERE! HO THERE!- It's Cubby O'Brien. WHY? Because I like him!
Second photo: IT'S WHAT'S FOR DINNER - Scene from Twilight Zone episode "To Serve Man".
Third photo: PROBED FOR TENDERNESS - Abductees Barney and Betty Hill

Sometimes ya just have to make light of your own situation!