When do you surrender?

I’ve debated writing this post for several weeks. Overall, I was worried it would sound whiny or complaining, and I honestly try not to be like that (at least not too much). Most people have busy lives and problems of their own and don’t have time to invest in my issues.  I’ve finally decided to write it because it might inspire someone else to take control of their life, before it’s too late.

red flowers
red flowers

Fibromyalgia has been a part of my days for about 10 years now , and I’ve written about it from time to time. It’s steadily gotten worse to the point where I felt pretty handicapped. Going to the court house for work was difficult–if I couldn’t get a parking place nearby, I had a hell of a time getting there. I gave up my house for a small apartment with minimal stairs. My marriage suffered and eventually ended. Daily chronic pain was unrelieved by the mild exercise I could do without causing more pain.

My grown children were sympathetic, and we tried to work out a plan where I might go stay with one of them, so I didn’t have to manage a place on my own. Of course, Little Miss would have to go along, and she’s still in school.  And I wouldn’t have a job. Or insurance. And they’re not keen on giving disability for fibro. You know, since it’s not one of those “real” diseases.

Besides, why should any of that be imposed on one of my girls? Not their fault. They’ve got their own lives.

So, nothing worked out. Better yet, this year I’ve had a steady stream of diagnoses. Both knees’ cartilage totally destroyed. Torn retinas causing flashes in night vision. Sleep apnea. Neck and back arthritis. (Getting old just isn’t pretty, folks.)

Overwhelmed, I started wishing that whatever was wrong with me would just escalate and end me before the summer came and I had to make a decision. If I was dead, I wouldn’t have to deal with it any more…the day-long pain, the things I couldn’t do for myself any more, the knowledge that there would likely be more and more things like that. Sure, I could keep taking two Vicodin a day and muscle relaxers, and more and more anti-inflammatories that were eating away at my liver.  It wouldn’t make the pain vanish, but made it tolerable most days.

This is from someone who has a reasonable income that provides for our needs, an education, transportation, food on the table and a roof overhead. I can’t even imagine how this goes for someone who doesn’t have these things.

autoimmuneAnd then in late August, I got the topper–gout/arthritis and rheumatoid arthritis. For those who don’t know, the latter is an autoimmune disease. My body had become so dense with inflammation, that it was attacking itself, no longer able to differentiate what was good and bad. That’s why my ribs ache. That’s why my knees are shot. Probably the retinas, too. I’d done it to myself.

That could have been the end.

Instead, I found myself galvanized into action. I’m still not sure what the difference was, but finding myself under official attack must have kicked my competitive nature into gear.  I started reading about RA and some of the treatments out there. I consulted with some friends about it, what worked for them, what didn’t. One of my daughters had a family that had gone on the paleo diet to help with my granddaughter’s thyroid issues, and she extended a hand. My sister Shawna had recently received a spinal arthritis dx and she was dealing with the same thing. I signed up for a monthly healing seminar. I have support.

I could do this.

The dietary changes to reduce inflammation seemed like the best first step. The next day, I went to the grocery store, armed with the AIP list of foods to eat and foods to avoid, and I’ve followed that for over six weeks now. Is it a bitch to eat no dairy or eggs, no beans, no nightshades (tomatoes, peppers, eggplant, potatoes), no grains, no nuts or nut products, oils, etc, ? You betcha.

But my pain has dropped about 75%. Yes. I said 75%. My energy is up about 50%. I might take two Vicodin a week, instead of two a day, and some weeks not even that. I’m in physical therapy and try to walk on the days my knees don’t hurt–and there are those days. On cold rainy days, I used to curl up on the couch, unable to move. Now those days are just like any other day. I’m winning the battle, for now, anyway.

That’s all I can do. One day, then the next day, then the next.

Because I’ve got a lot more days out there, and without all the suffering, I know I’ll really enjoy them. I finally scored an appointment with a rheumatologist at the Cleveland Clinic for next month, so new options will become available. There may come a time when I have to give in, but I haven’t reached it yet, not with this new lease on life. Supporting those with chronic pain is hard. But knowing someone else’s outstretched hand is available– preferably holding a couple of spoons!–is priceless.

A local tradition–Fair time!

It would be difficult to find a bigger event in our county than the annual fair. It’s said to be the largest agricultural fair in the state. it sure feels like it on my broken knees at the end of walking around it all afternoon, that’s for sure!

I was originally not going so early in the week the events will be going on, but I made the mistake of discovering that a live wrestling event was going on. Not the  WWE, mind you, but a smaller, local version thereof. Little Miss has become a huge fan of WWE. for some reason, and I missed a chance to take her to an event last year. So I bucked up my courage and muscle relaxers and we headed out to the fair grounds.

IMGP2233She picked seats that had a great view,  away from the main crowd, and the bulk of the noise. I was also tickled that she managed to go to the  busy souvenir table, and negotiate her own signed photo of a wrestler, IMGP2224with her own money, despite a barn full of sensory distractions.

The matches were hot and heavy, and she got to see Asylum, her IMGP2225pictured wrestler fight.

My favorite was the last fight we watched….hard to tell who the “bad guy” was. The fight was allegedly for some Pennsylvania championship, and the current champ, IMGP2227“Big Time” Bill Collier, sure had a big shiny belt on. But he was fighting this little skinny guy in tie-dyed yoga pants, who IMGP2227went by the name Jimi the Flying Hippie. How could I not cheer for Jimi?


The crowd was funny, too, because Big Time came out as a bad guy….but sure as shooting, the politics in this backwoods haven of conservatives took over and the poor pinko hippie IMGP2237had no chance at all.

Once she’d had her fill of the entertainment this provided, we walked the fair grounds until I couldn’t stand it any more. We checked out the Home Show buildings, where she got comic books from the CCDAEC  that convinced her that I needed to stop drinking my once monthly wine coolers because I am clearly an alcoholic. *eye roll*

IMGP2241Of course we stopped by the Methodist Church building to have homemade pie! She tried strawberry rhubarb on purpose because it was something new. :)

And no Nick! Serious disappointment there.

Lastly, it was annoying as hell that the carousel they got this year was for little kids only, and they wouldn’t let her ride. She was nearly in tears, but stopped just short. It’s been her go-to ride, guaranteed at least five times a fair. She needs the spinny thing to help with her fair sensory overload. They didn’t even have bench seats, like most do, for the older people to relive a bit of their youth with a ride. Considering they charge admission including rides for everyone this year, you’d think everyone should have access to the rides. End rant.

So we went on the ferris wheel instead, and she pronounced herself IMGP2242satisfied, and reluctantly declared it her new favorite. From there we could see them setting up  hundreds of seats in addition to the grandstand for the Jake Owen concert. We left just before that onslaught of folks began to arrive. Yay!

Now for a night of trying my new magnesium oil spray and letting Little Miss de-stress. She had an amazing day, and I couldn’t be happier.


Summer of the game show

One thing we learn about kids on the spectrum is that they tend to think about things in a very black/white manner. What they see in front of them is what is; if it’s not there, then they don’t imagine it.

For years, Little Miss was this way, and it was a constant point of “push” on my part. Why did someone act in a certain way? What would happen if…? That intuition part was just absent. I always got an irritated “I don’t know,” or more often, just ignored.

But this year, that door has cracked open, slowly at first, and then the possibilities have expanded–thanks to American game shows.

I have mostly considered game shows kind of a waste of time. After all, I wasn’t winning anything. Other than bragging rights to answering Jeopardy questions faster than the contestants (not necessarily a grand feat safe on one’s couch), there wasn’t much point.

wheelBut then we discovered Wheel of Fortune. it was on one night and I noticed Little Miss picking out patterns. She could identify “the” from one letter. Or other combinations. So we started purposefully watching until she could use her intuition to guess the letters. Eureka! Something beyond black and white!

Simultaneously, her ability to explain other things not seen fleshed out as well. Why did that man on the commercial ask people to behave a certain way? What does that girl feel, just by reading her face? Continued progress.

So while other parents, I’m sure, are chasing their kids outside, I’m setting up game shows. We watch The Price is Right, to guesstimate LMADthe prices and how much things might be worth. We watch Let’s Make a Deal to learn how to make decisions about things that can’t be seen. Should you trade a small box for a large box? Is bigger always better? Is money in the hand better than something you can’t see? She nearly always chooses the sure thing. Can’t argue with that.

This month, she’s kept her tablet handy, and every time there’s a trip to somewhere, she looks up where it is, identifies the flag and the location, and shares some facts with me about the country or city. If it’s a place she’s been, it brings recall of fun trips together. Otherwise, it’s a painless geography lesson.

asseenOf course, she’s still focused on having all the “As Seen on TV” gadgets, or anything that’s marked “New”. We’re working on that. But watching how she’s developed this summer, thanks to these entertaining lessons, I think we’ll get there.

Now I just have to get her a passport so she can go to these islands in the Caribbean. She’s insistent….


What I did on my summer vacation

Remember those corny writing assignments we always had to do at the beginning of school every year? Our local schools don’t start until the first week of September, but it sure feels like it’s coming down to the wire!

So what did we do this summer?

Little Miss has been content to spend quiet time in the apartment, alternating with periods of sitting in the grass outside communing with nature. Since my chronic pain/fibromyalgia has been in flare mode the past several months, that’s been fine CCI08152015_0000with me. However, she did go to her first sleepaway camp, and completed a week away from home very successfully! She didn’t try everything that was available, but did learn about archery and came home with a whole box of arts and crafts. So proud of her.

We also traveled south, as we usually do, making stops in Asheville and Pensacola. We’d hoped to be moving to Asheville this year, but a number of factors combined to put it off again.

Little Miss has a National Parks Passport that she likes getting stamped at important places, so we kept an eye open for these opportunities. We IMGP2194found one on the way south at Friendship Hill, PA. where she learned about Albert Gallatin, a Secretary of the Treasury who bought one of the best real estate deals in American history–the Louisiana Purchase.

IMGP2195We also enjoyed the grounds of his beautiful home.

Asheville was a delight, as always We picked up the Z-Man (grandchild number 9) and took him along for a week of fun and sun in the Panhandle with the other cousins.

My Pensacola daughter, who’s a local teacher, took us to the Gulf Islands National Seashore, where we visited Fort Pickens.  (More on this in my next post!)

IMGP2200We also had plenty of down time to enjoy the backyard pool, with grandchildren #s 3,5,and 6. Because the girls were so busy with activities, I got to spend more time with Ethan, which was really nice. DSCN0934Tween boys can be standoffish and hard to talk to some times, but he was sweet and really helpful. Meg threw a birthday party for Emma, in the form of a carnival, with games and tickets to win, that was an amazing stretch of creativity and fun for all, despite the 90-demma2egree temperatures. My contribution? A watermelon basket.

Emma also participated in a gymnastics demo, which was almost too much for my camera speed. For someone with such long legs, she’s DSCN0958very flexible!  What a talented bunch of family I have!


Love the children with Project Linus!

Once again this year on Tuesday August 11th, NWPA Project Linus has a very unique and exciting opportunity to take part in this one day event- Erie Gives from 8:00am – 8:00pm @ Eriegives.org. We have qualified and are registered for this event.

 We would ask that if you give to a charity throughout the year that you would consider donating to NWPA Project Linus on that day.  Last year our NWPA Project Linus raised with your generous help nearly 700.00. Over all 2.5 Million dollars were raised in this 12 hours of fund raising here in Erie. That is an incredible amount and we continue to have a very generous Community.

 Your donation to NWPA Project Linus would assist us to purchase blanket making materials to help us meet the growing need in our Community of children in need. Last year we gave out 2,307 blankets to children in Hospitals, Shelters, Office of Children & Youth Service and many other Agencies that provide a service for Children in need.

 What is Project Linus?

Project Linus is a 100% volunteer non-profit organization providing handmade security blankets for children who are seriously ill, traumatized or in need. Our blanketeers make handmade blankets to give to these babies and children to keep. Our goal is to help these little ones through whatever they are going through, be it an illness, hospital stay, surgery, tragedy, loss of a loved one, whatever the trauma with the love and comfort of a security blanket.

First it is our mission to provide love, a sense of security warmth and comfort to children who are seriously ill, traumatized or otherwise in need through the gifts of new, handmade blankets and afghans, lovingly created by volunteer “blanketeers.”
Second it is our mission to provide a rewarding and fun service opportunity for interested individuals and groups in local communities, for the benefit of children.


Day and Time: The event takes place on August 11. You have 12 hours to make your donation between the hours of 8 a.m. and 8 p.m. EST.

Gift Amount: The minimum gift is $25. There is no limit to the amount of money you may give. You can give up to 10 nonprofits per transaction.

Credit Cards: Only Visa, MasterCard and Discover will be accepted. The credit card processor charges a nominal fee per transaction. The Erie Community Foundation does not receive any fees. (Sorry credit card gift cards will not be accepted.)

Prorated Match: The Erie Community Foundation will enhance each donor’s gift by providing a prorated match to each gift made to a nonprofit. The Foundation will divide a total of $220,000 ($100,000 provided by The Erie Community Foundation, $50,000 provided by GE Transportation and $30,000 provided by Erie Insurance:25,000  provided by Presque Isle Downs & Casino, 5,000 Eriez Magnetics) among the participating nonprofits. The more a nonprofit raises the more of the $220,000 the nonprofit will receive.

Your Receipt: You will receive an email receipt of your gift; please retain it for tax purposes. Unless you choose to remain anonymous, your donor information will be sent to the appropriate organizations.

Please consider donating for this wonderful cause!

A brief interlude

IMGP2184I got a chance to travel to Florida this weekend to a friend’s wedding, a long-time compatriot from my newspaper days. She was the matron of honor at my second wedding (or third, depending on how you count it), and I’m the godmother of her first son. That being said, we haven’t been closely in touch for years, though we do manage to have a face-to-face at least once every couple of years.

Florida is beautiful and sunny in May, though the temperatures were considerably higher than I was used to, after a long winter in the IMGP2180frozen Northlands. The wedding itself took place on the beach in Melbourne. Both the bride and groom wore white–before Memorial Day! *fans self*  Most of my lady friends in the South would have fainted dead away. It was short and sweet, and the view was delightful. The ceremony was followed by a small but energetic reception with some of the best food I’ve had in awhile–jerk IMGP2181chicken, reggae shrimp and this lovely cake:

I also fit in a trip to my dear friend Edde’s in Fort Pierce, where we had lovely weather except for the last night, when IMGP2190some serious dark clouds rolled in over the ocean, dragging thunder and lightning with them. But we still had a nice visit. She was feeling a good deal better than she had been in December, when last we visited, so that was something to be grateful for.

Little Miss spent the weekend with her dad, which I hope did them both some good. Certainly a little “me” time was appreciated. And of course, nothing says Florida like this:IMGP2172

Not something you see every day….



Does politics make the man?

HoCEarlier this year, I binge-watched both the British House of Cards series, and the American one.  When the new season of House of Cards was done, I went on to  The West Wing, which I’d never watched back in the day.

What I think as I watch the storylines unfold, is that many of these people are unpleasant.  For every time I want to hug Leo McGarry (ok, maybe more so for playing Tommy on LA Law before), I consider how Josh Lyman is a spoiled and privileged brat that has no concept of how millions of people actually live.

westwingNeurotic Toby makes me crazy. But not so crazy as the trade-offs and back room talk, the gossip and deals, the lifeblood of politics.

This is ironic, because I grew up in a home where politics was a staple of everyday life. I spent many years going door to door for candidates, dropped off by my dad, George Wright, with a handful or leaflets and a “Have fun!” He eagerly took me to vote for my first time, in a state primary. The ladies who ran the polling place were so excited I was there, because they’d all known and worked with my father for years. They proudly handed me the Republican ballot. Of course, when I told them I was a registered Democrat, there was quite a little fluff about it. I guess I’d forgotten to mention that.

One year I got to be a page at an Ohio Republican Convention of some kind. It still didn’t fascinate me. But it certainly fascinated my father.

When I was too young to notice, he let his drive to become part of that glam world of “who’s in the know” take him so far as to have an affair with another politico and leave my mother. He was a delegate to the Republican convention that nominated Goldwater in 1964. He was chair of the Ohio Young Republicans. In his later years, he switched his affiliation to the Libertarian party, and ran the county group here in Pennsylvania. He went to the National Convention in the 1990s–and we got a July 4th trip to Washington DC out of it. He ran an Ohio gubernatorial campaign. He loved it. All the talk, the planning, the scheming–much more Jed Bartlet than Frank Underwood, mind you–but still, he got all that back-room stuff. He could talk about it for hours. When he lived in Meadville, he went to all the commissioners’ meetings, and city council meetings, and ran for the school board.

But the other thing you notice when you watch these programs, and it may or may not be true for everyone in the world of politics, is that george-Beth1these are lonely, workaholic people.  My father wasn’t much different. Perfectly at home in a room full of suits, chatting about mills and taxes and upcoming elections for miles around, he was in his element.

Visiting with a family full of small kids? Not so much. Even occasions like graduation, he was uncomfortable with the hugs and emotions.

Is that what it takes, to be able to stomach some of this wheeling-dealing that goes on? The removal of emotion from the equation? I wonder.  Going through his possessions after he passed away a few years ago, I found so many treasured items, gavels, certificates, all from that world he never got to give himself over to as a young man. If he hadn’t married my mother, if he hadn’t had children, would he have run for office and moved up the ladder like these characters, too? Did we hold him back from a future he would have preferred?

As much time as I spent with my father in his last years, I still never felt I really knew him. And that’s a shame.


Life in the vicinity of a good time