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

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.

...and I got this really cool camera too!

Top photo: Steve Cagan (left) and Howard Singleton (center) discuss camera functions while Jerome Pleasant (right) and Gary Waterbeck (foreground) listen.

Class participant Gary Waterbeck double checks camera settings prior to taking his first picture on his new camera.

Kevin Cleary "Homeless Grapevine"

reporter readies the laptop computer for use by class participants.

All photos from the 2007 photography program by class participant, Cindy Miller .

In 2007 and 2008 the Northeast Ohio Coalition for the Homeless received a grant from ODDC (Ohio Developmental Disabilities Council) for its "Homeless Grapevine" street newspaper photography program.

The course objectives were to: teach a marketable skill to the class participants; raise awareness of homelessness through advocacy photography in venues including public showings and publication and raise funds for NEOCH programs as the result of the sale of the photos. The class participants received 50 percent from the sale of each photo.

Grant money, awarded to the coalition for the photography program, paid for the purchase of a professional quality photo printer, digital cameras with software for each of the class participants (with one to be used by NEOCH), photo print paper, matting and frames. Each graduate of the course received a stipend upon course completion.

Gary (my significant other) and I were among the four people who completed the initial digital photography course in 2007. Noted Cleveland Heights activism/social justice photographer Steve Cagan taught the class through sharing his expertise in activism photography.

Each week we were given an assignment, set loose with our cameras and returned the following week to upload our images into the computer while learning to import and fine tune the images in Photoshop.

Our individual works were published in the "Homeless Grapevine" newspaper; a NEOCH publication that helps homeless and formerly homeless low income individuals earn an honest living as independent vendors.

Not only were our photos published in the "Homeless Grapevine" newspaper and on various pages of the NEOCH website but our photographic works were on display and for sale at the main Phoenix Coffee location on Superior Avenue.

Throughout this blog and the future postings, I will include photos by participants of the 2007 and 2008 "Homeless Grapevine" photography program.

There's No Better Time & Place To Invest For Your Future Than Now & At Home!

It was October 2008 when Steubenville Herald Star writer Janice Kiaski made a plea to readers asking them to submit their personal stories as to what made them thankful in 2008 during the Thanksgiving season.

In 2008, I had a lot to be thankful for so I responded to her plea by e-mailing her the following:

Hi Janice!
I read in the Herald Star that you wanted to hear from readers about what they are thankful for this Thanksgiving.

Here's my story briefly.

In 2005 I became homeless. I had been getting sick for many years, had difficulty working due to my disability and eventually lost my last job in 2003 because my symptoms interfered with my ability to function.

I struggled for over a year trying to fill out forms to apply for Social Security disability. I finally finished the forms in 2004.

After two denials from Social Security, I was evicted from my apartment of ten years. I was homeless for five months staying at a women's shelter in Cleveland, Ohio. Because of my disability, I was able to get assistance for a HUD funded apartment. On November 23, 2005 I received the key to my apartment. I will have to look at an old calendar but it was a day or two before Thanksgiving.

Because it was a holiday, the shelter permitted residents to sign out for the long holiday weekend without risk of losing our beds. Although I had no furniture, much less a bed to sleep on at the apartment, I decided to spend the long weekend there rather than at the shelter.

Thanksgiving Day I decided to take advantage of the free meal at The Hard Rock Cafe and stop back at the shelter to pick up some of my clothes. The weather was brutal and my legs cramped as if they were being crushed. I thought I was going to die waiting on a bus.

After the long weekend staying at my apartment sleeping on the floor, I went back to the shelter for a few nights until I got some furniture.

I was in HUD housing until I received my first lump check from Social Security in 2007.

I paid off 90% of my debt owed to creditors (the ones I could find), was approved for a mortgage and bought my first home. I moved back to Toronto in April 2008.

While in Cleveland I served on the Board of Trustees at The Northeast Ohio Coalition for the Homeless (www.neoch.org) where I also volunteered and was a contributing writer and photographer for the street newspaper "The Homeless Grapevine". I also served on the Advisory Board for Care Alliance; a health clinic that serves the homeless and poor of Greater Cleveland.

I have spoken about my experience with homelessness before The Truth Commission, at Case Western Reserve University and with various members of Cleveland City Council as a guest of Brian Davis, Executive Director of NEOCH.

I have been very busy remodeling, repairing and redecorating my home since moving in. I hope to get involved in the community next year regarding homeless causes. I have a wealth of information to share due to my association with the homeless coalition.

The title of my book (when I find the time to write it) will be "From Homeless to Homeowner". Michael Heaton of "The Plain Dealer" suggested "Homeless in 25 Minutes".

I have included some links:
http://homelessgrapevine.blogspot.com/ - see one of my many photos published in "The Homeless Grapevine" that was used on the masthead. Scroll down to stories about the photography program I participated in: Plain Dealer Features Grapevine Photography Program & Grapevine Photography Program Celebrates Successful First Year

Stories I wrote:
http://www.neoch.org/grapevinearticles/72/fly_on_the_wall.htm
This was the first part of a series I wrote about conditions at Community Women's Shelter. I used the name Diana Dennis to mask my identity.

http://www.neoch.org/grapevinearticles/77/truth_commission_puts_poverty.htm
About the Truth Commission and my testimony in Cleveland.

If you are interested in my story, feel free to call me. I have also included some of the photos I took with the camera I received through the Homeless Photography program.

Several days later, Janice called me and interviewed me over the phone. Three personal stories were published in the Thanksgiving edition of The Herald Star with other personal stories appearing in the following Sunday edition.

Thankful for memories, miracles, having a home was also published in the Toronto Scene.

My intent of participating was to increase awareness about homelessness and from the positive feedback and acknowledgment I have received from friends, acquaintances and people who recognized me on the street, I accomplished my mission and made them aware that they too could become homeless at any time for any reason.

Due to the economic climate, not only worldwide but especially in their own hometown, the people here are fearful of loss of job, loss of family, loss of health with the additional financial burden of the associated medical expenses and potential loss of home. All three stories in Janice Kiaski's story bring those fears to light; that there are people in this community that they might know who experienced some sort of loss but have come through it with the help of friends, family or a non-profit social agency.

The population in the Ohio Valley has declined dramatically due to job loss in the steel industry. Other manufacturing facilities closed their doors for good in the late 1970s and my hometown with its much smaller population of close to 5200 has 158 families receiving groceries from the food bank in town.

But one thing this community does understand is volunteering and donating to the local charities that serve the people here. The residents here understand the possibility that they too may need help.

United Way surpassed their annual goal as well did the Toronto chapter of The Salvation Army. The people here come to the aid of anyone who needs help. They, as Congressman Charlie Wilson has said on numerous occasions "Get It!"

People often ask me about being homeless and how can they help others. My response as always is "support your community; the local small business owner and the charities that help your community". Friends want to help me put together personal care packets.

And, although she didn't publish everything that I sent in the e-mail sent her, Janice Kiaski told me I made her more aware too.