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.

Once homeless in East Cleveland, Goldie now enjoys the good life here in Toronto

Goldie in from the cold and enjoying a peaceful nap on the
couch this afternoon.

Relaxing at the computer, enjoying an original composition Cat Day by his new buddy CheapRobot.



Goldie last summer standing beside the chalk art he inspired by next door neighbor Meghan.

When he was homeless and without a name living outside of Terrace Tower in East Cleveland, Ohio. Gary took this picture of him from our 12th floor apartment.

It was 2007 when he showed up outside the main entrance of Terrace Tower in East Cleveland. I think it was Spring. Some residents petted him, some fed him, others kicked him. He looked like he was between one and two years old, very healthy and smart. We think someone dropped him off; abandoned him.

At night, he slept outside the door. If it was chilly during the day he liked to sun himself on top of the transformer beside the building.

He was a friendly little guy too; still is once he knows you and feels safe being near you.

Soon, a very young little female cat joined him. Called "Princess" by her owner, she had to be put outside because the owner didn't have the money for a pet deposit. It was obvious that someone abused her. She didn't like men and to be touched; she would scratch and bite anyone who tried. Her so-called responsible owner put a carrier outside for her; some filthy junk that looked like it was dug up out of a dirt pile. Several days later, it was thrown in the dumpster.

Because these two were together, Gary decided to name them. The male cat finally got a name - "Goldie" and Gary started calling her "Hawn". How clever!

Some of the residents fed them but didn't clean up the empty cans or whatever packaging the food was in. Some days no one fed them and on the brutally cold days and nights, often what was left out for them was frozen. I made sure they were fed several times daily, more often in the winter.

When the elevators didn't work, I wrapped their food in foil packets and we dropped their meals to them. The impact of hitting the pavement would loosen the packets so the cats could open them and eat. They got used to the air drops so all I had to do was call them and they would be under the window looking up; waiting for their meals.

During the summer of 2007, Gary managed to find us a truck for $500.00. Every day I went out Goldie would walk me from the door to the truck and, when I returned, he would come out of nowhere and escort me back to the building. I called him my Guardian Angel.

Months later, after she was put outside, Hawn would sometimes join him. If I had purchased cat food, I could feed them near the truck.

Management didn't want the cats around the building due to all the litter left behind from the residents who fed them. Attempts were made to discourage feeding them.

Once I got my Social Security disability approved and started the negotiations to get our house, Gary and I wanted to bring them with us. We made sure they were fed; we wanted to make sure they would still be around when we were ready to leave.

I made my offer for the house in October 2007. Due to numerous complications, the deal wasn't finalized until March of 2008.

Finally, we could give Goldie and Hawn a real home.

It was April when we got the Penske truck and were ready to roll. Goldie was going to ride with Gary and his friend Alan in our truck. He willingly came to Gary. Hawn scratched the hell out of me and everyone who tried to touch her. We tried to bring her several times; even when we returned to East Cleveland for doctor appointments. She cut us both up.

Our truck broke a wheel axle and couldn't make the trip. My friend Dee and I proceeded southeast to Toronto where we unloaded the truck with the help of Gary's two sons Bo and Keith and one of Bo's friends.

I returned to East Cleveland to find Gary and Goldie laying in bed. Goldie lived with us in the small efficiency apartment until we made our final move once our truck was fixed.

A week later, we made the final move and Goldie walked into the house and made himself comfortable immediately.

He no longer has to endure the brutal lake effect snow storms coming off of Lake Erie. He often doesn't want to go out in the rain and snow. He is quick to come inside when the weather is bad. He has many comfortable and safe places to sleep, good healthy food to eat, clean water to drink, grooming and health care.

Goldie reigns supreme here; HE TOTALLY RULES and we are so glad he chose us to be his mommy and daddy.

Seems like every time you pick up a newspaper, well, there I am!

"Herald Star" & "Toronto Scene" writer, reporter, photographer extrordanaire Mark Miller stopped by Thursday.

At the end of his columns in the "Toronto Scene" he always adds a blurb requesting the readers to contact him with any news and story ideas pertaining to Toronto.

Brilliant! Cast the line, dangle the bait; ask for referrals. It works.

Well, I bit.

In the below freezing bitterly cold still dark early morning hours of last Saturday morning I awoke at 5 a.m. to a cold house with no power. Prior to midnight, someone crashed into the power pole in front of my house snapping the pole three quarters of the way up. American Electric Power workers arrived at 3:45 a.m. to shut off my power and disconnect my lines.

So, fumbling around in the dark, I managed to find my torch lighter, light a few candles, slip sweat pants on over my PJs, find my shoes, grab Gary's and my cameras and head out the front door to shoot some video.

So once the power came on (at 7:20 a.m.), I powered up the computer, started uploading the vids and proceeded to shoot the following e-mail off to Mark.

Someone ran into the light pole in front of my house and AEP came out Satuday morning around 4 a.m. to replace it. I took loads of pix. Are you interested? I don't know if they caught the guy who ran into the pole. I called po-po around 8 this morning. Larry Fogle hasn't called me back.
Give me a buzz....(phone number).

I'm uploading vids onto my YouTube channel www.youtube.com/thiznat Check it out!
I'm starting a Toronto channel featuring people in the community. I'd love to vid you since you are our reporter.

Well, Mark called Monday afternoon but he wasn't interested in the photos I took of the pole replacement. He was interested in my YouTube channels and wanted to interview me for a human interest story about those channels.

I asked Mark if he was sure if he really wanted to write a story about me since one written by Janice Kiaski appeared in the "Herald Star" and "Toronto Scene" in November.

Didn't matter.

So Thursday morning, along comes Mark armed with Portage Reporter's Notebook in hand and camera bag slung over his shoulder. We compared cool cameras. His and mine were Lumix digitals.

So check out the interview in the Saturday, February 28th edition of the "Herald Star" and be sure to check out my YouTube channel soon to learn more about Mark Miller the musician, singer, songwriter.

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.