I'm An Appalachian with Chronic Fatigue Syndrome

I put 3 of these up today on You tube. I will be able to go back and forth on this. I'm working on a blog about Thanksgiving. I hope to get that up next week.

Appalachian Heartwood Blog on You Tube?

Ok folks trying a something different. I been pretty sick and so I posted a few videos to You Tube. Don't know if this will be good or bad. We are going to roll with it.

Just An Update for LATE SPRING

Just thought I'd post something!! Let those that follow the blog know I'm still alive and kicking. Though I screwed up the title first thing by putting And instead of An Update. BRAIN FOG!! Been quite busy this spring. Ya'll know with my medical condition, it's called, so little energy, wearing out quick, with too much to do. I've so many posts to publish.  I won't post them until I think they are finished. Probably being too much of a perfectionist on my part.

 My son outside for a little while.
One of his good days. 

My son juggling his own his medical condition is a top priority in our lives right now. Getting him help takes a lot of effort and energy. Just the shear volume of paperwork to apply for this program or that program and keeping up with appointments is unreal. New medications this week, more paperwork. There are now two boxes of files for his papers and this illness.

I also try to keep the housework up, the house from falling down around us, and the bills paid. I MISS being healthy.

It amazes me that my disease has an effect on everyday maintaining activities, like dishes or a bath, that have to be accomplished. When I'm in one of my cycles, it's like my body is just made of lead and every movement is pain in the simplest of tasks. It takes forever to accomplish what used to be so easy.

I miss 18 hour or 20 hour active filled days that I used to enjoy. You know that feeling when you have full productive day and you work until all the tasks are done? Those days are GONE! It's so frustrating to stop but I've learned the hard way that over exercise and pushing to do too much is a great, BIG, NO, NO.

I have to be mindful and steady because over working muscles and joints puts me down in those viscous cycles where I am wiped out for days. Then I get nothing accomplished at all and stress to no end. It is such a cruel balancing act, one I lose often, especially right now with my energy focused on my son needing help. I've been pushing and the old blog is suffering as well as many other endeavors. Not being the active person I was, is a hard thing to deal with.

I'm learning to tell the signs of my body especially when I've gone too far. First, I start dropping things, tripping over nothing when walking and staggering like a drunk especially turning a corner. I fell into a grocery display the other week, and knocked cereal boxes all over the place. I was so embarrassed.

My speech, I can't talk when I go too far. The muscles in my face hurt and it's as if my brain is saying the words I want to but I can't get my mouth to. Sometimes I don't recognize what I said. At times like that I elect to be more quiet than usual and I'm a big talker normally.

I can't name everyday objects or a sentence can come out completely backwards. I've even typed sentences backwards or words out of order!!! Weird disease. The brain fog kicks in BAD. My only recourse is to completely stop whatever I'm doing, climb in bed and rest. Then I'm singing Take It Easy!

I've taken natural stuff, changed diet, read everything I can. I am better than when first diagnosed I think because of some natural antibiotics I've been taking. But I think I'm learning better how to live with it. The cause and cure of ME/Chronic Fatigue/Fibro...whatever they want to call it..it's linked I am certain... is still as elusive as ever. I check every week for new developments. Some new info is very interesting, some sound like they are trying to sell snake oil.

But we are alive!! We are blessed each morning when the daylight arrives with another day to tackle whatever may come and get it right.

BUT...I have accomplished some things in this madness around my last post. I went to a power analysis weekend for Virginia Organizing, learned a lot and had a great time. RESTED a bunch after that. Travel really does a number on me. I have a little garden I put in 15 minutes at a time over a very long period and it's growing. Needs weeding but 15 minutes at a time is better than nothing.

I was overjoyed to find I have a lilac bush at the corner of the house. I thought the woody plant looked special and refused to let it be cut down. I was awarded this year with lilacs and the smell was wonderful. I made some more dandelion wine after a year hiatus. It is ready to be bottled and I hope to get that accomplished this week.

I went to Ceres Day and demonstrated some corn husk doll making.

I love the little community of Ceres in Bland County, VA. They took the closed schools and made it a community center/museum. They have the best cooks over there too. If you get a chance to attend an event it's well worth it. Click Here Here are few pictures from the event Ceres Days May 1st 2015.

 And I started a short story book on railroad stories from the family to share before they are forgotten.  So I am going....slower than normal but I'm going. Hope your world is also blessed. 

Appalachian Heartwood Fall Update 2014

Yes...I know it's been a VERY LONG time for a blog update. So much has been occurring and I only have so much energy to do so much. I have to pick and choose what I put that precious energy on. What I have been doing has been trying to figure out what, in my condition, I can do to get some extra funding in here. What can I do to make myself useful again, to take care of my son and myself. Appalachian Heartwood is now a LEGAL small (and tiny) business. Doing what? Whatever I can do in this shape.

I contacted Virginia Rehabilitation and they reopened up my case again so they can help me, as a disabled person, do as much as I can. Basically, some taking over some of my son's business. He had an eBay store before he became very ill last year.  I opened an eBay store, to sell items he gathered and things we have here that can find a new home. Online yard sale. Getting ready to open an Etsy account to sell crafts I can get made. This blog you noticed has some ads on it...it's like a penny if someone clicks them but hey...every penny counts. I've been asked to help put together a book.

There are also some how to videos that I'd like to do to show folks some of the skills I've learned over the years and share those before I can't do them anymore. Only have to do that ONCE and it's preserved forever!!

Now it just is a matter of what I can get accomplished. This is not to get rich and it certainly isn't to work full time. Those days are over. I mean it's taken me weeks to get the accounts set up. I will have links on this page to those accounts, but as of today, nothing for sale is up. That will change this week.  Not as fast as I like. I am really seeing how hard it is for me to function on a normal level ....but THAT IS OK!!! I'm alive and it's up and going!!

Little concerned VA Rehab wants my resume? There is no way I'm working a regular job in this shape! I believe I made that clear. I can't be relied on to be at a certain place, at a certain time, everyday, anymore. Old body don't work that way. I have to have the full 24 hours to do any part time or partial work.

I have to take a lot of breaks and plan to be rested up just to go to the store or the doctors. If it's a big day for me to be somewhere, then I don't do any mental or physical stuff for a couple of days before. Seriously. If I don't pace myself, then I'm DOWN for the count. I've screwed up several times recently, and there is NO exact schedule I work in.

People see me out now and just by looking at me can't tell what's wrong. I was standing in line couple weeks ago and someone I know looked at me and said, "I don't see a thing wrong with you." I told them, "Well my condition really hasn't chopped off any arms or legs, or disfigured me with horns growing out of my head and I fight being in a wheel chair, using a cane or a walker, but believe me, my doctor's and myself know I'm not well." What else can you say?

They don't see what I had to do to get there where they, "see me", functioning. They don't know that I'm having heart problems, or brain fog, or I have the feeling daily of having a never ending achy flu that NEVER goes away, standing there talking to them.

Nor do they know that many times, as soon as I hit the door home, I'm back in the bed, and sometimes for DAYS. They don't call it Chronic Fatigue for nothing. They don't know I sleep in 3 or 4 hour increments because pain wakes me up. I just have to ignore all of that and let them think whatever. Though I really get tired sometimes of hearing, "you don't look that sick". Ever heard never judge a book by it's cover? It works for humans too.

But what's helped me the most since about last Fall is I work in 15 minute segments. That 15 minutes came from a site called Flylady, I found about a year ago.  It's a clean your house organization, motivation site. I was looking around at my disaster of a home looking for inspiration to take care of it. After being ill for a couple of years and then my son getting sick, I was trying to motivate myself to do something!!! Anything... it's still sort of a disaster but better than when I first started this.

They promote this idea you can do anything for 15 minutes and you take jobs you have to do in small 15 minute stages. There are days when I get very few 15 minute work segments done, but it helps me focus.  Ed bought me a timer and I use it. I work 15 minutes and rest, work 15 more and rest. This is working for me. But I know how I have to function today in the world, would never work for a regular job.

On top of that I'm trying to figure out how to get materials and labor to help to fix what I call my "old barn". It's really not a barn but it is an old home place. The main part of this house is an old cabin over 100 years old, the one side was built about 1910, the back had porches that were boxed in and that's where I need to really get to work on.

So I hope this little enterprise is successful to get some extra funds in here. It does make me feel hopeful and hopefully useful. I'm not the person I used to be that could work circles around a job and get things accomplished like I did. Ed used to say I was, "busier than a one legged woman in a butt kicking contest", but I'm not dead yet.

Ed playing up at Big Walker
Mountain Lookout

Speaking of my Ed...few weeks ago he was hanging out in Jim Lloyd's barbershop when a news crew came in to do a story. They interviewed him about Rural Retreat's master plan. It's a couple of minutes long and you need to watch it to the end...that's ED and why so many who know him, not just me, just love this man!! Classic Eddie Atwell! He's going to tell you what he thinks!

Ed's News Interview

In the next couple weeks there are about 4 blog posts just about completed. Had to find some papers, and books I had here to cite. Found them, now to get them cited.  Until next time, stay safe in the old world.

Appalachia: Living in MY World

 Well...it's always a challenge to know what to write about, how much, and what to reveal about family on a blog. Folks put some crazy stuff out there and I've been hesitant believe me. I could write volumes on politics and don't. We are divided enough. Write about current family but only with their permission, and things that are GOOD to write about. Writing about ancestors, already passed, is easy enough to share about. Even then, you want to tell the truth and make them look good in the process, but in reality...they are dead to this world and probably don't care.

But sharing what's really going on in my part of Appalachia and my little part of the world...it's been a struggle. While my internet is up and paid for, better share this quick because I don't know the future. I have faith I can keep what we have and things will get better.  The blackberries are in!

Last fall, my son cleared the blackberry patch. Last thing he did
really physical but he didn't get them trained. I've been collecting
 in the challenging tangle and freezing for when I have energy to
process. Freezer don't fail me now!

My son has been diagnosed with an aggressive form of some kind of crazy inflammatory arthritis. Tests for Rheumatoid Arthritis show up negative, but he has all the symptoms, plus a few more. Just hit him out of the blue last summer. He just started losing weight and complaining about his knees swelling with pain.

Most of us would love to be able to eat as much as we want and lose weight, but there comes a time when you want that to stop. He was very anemic and eating like a horse. A couple of months ago he looked like an Auschwitz survivor with knees the size of large grapefruits.

Well you guessed it...no insurance...no regular job, especially since he spent his time taking care of me. They didn't expand Medicaid in Virginia, so that does not cover him. He was eligible for it, but unfortunately they sent him a card that only covers pregnancy! I told him, if you get pregnant, I think there is an award out there for the first man that does, and you won't need Medicaid.

He's been so ill, it's a bit scary and he is not that old. We found a charity care program (thank GOD!) but most of the care is 150 mile drive from us...one way. We had the challenges of costs to get him there. I wasn't driving, he can't bend his knees to drive, so it's been fun!  We have found partial programs but most don't cover some of his needed medications. So much has been cut even in the private charity world...we just hit a bad time to be sick and down on the old luck in Virginia.

We have had friends and family that have stepped up help cover his trips to the doctor and his medications, some of the bills. But the old credit card looks like the national debt, to cover the rest.

He had been taking care of me, working odd jobs and covering the bills I could not, doing the jobs needed around the house. Now it's been reversed and I'm a lousy caretaker!! Bless his heart!! He can't bend from the knees and I can't stand too long. We still manage. You should have seen us fixing the stairs last December! Could have been a cartoon!

Got a tiny garden planted this year. So proud of
myself.Got some BEANS!

But it got me thinking about disabilities and working with them. I've always worked with a disability of some type. Been ill most of my life with something. My dad called me the "strontium 90 baby".  We lived in an area while he was in the military, that they were doing nuclear testing. The fallout of strontium 90 was showing up in the cow's milk I was drinking. I've thought about that with each illness I've had and I've had some pretty weird illnesses over the years.  But I didn't let these illnesses stop me. I just learned to live with them.

Three years ago the illnesses kept multiplying, on top of what I was living with.  I couldn't function like normal people anymore. I became not reliable to do my job, not really functioning on any productive level. Never been so sick in my life and I still am. I could have been on disability 15 years ago and chose not to until there was just no other recourse. I applied and was awarded disability in a month! Yep...I worked with a lot of illness going on in the old bod for years.

 I was fortunate enough to be in a place to have medical care to help me get to working again. Help me gain strength to heal to a place I could keep going and working and producing and paying taxes. Have access to programs and medications that helped.  I'm glad I didn't have cancer or a lousy insurance company policy that didn't cover at least some of it. Though last go round I still had to refinance my house to cover what wasn't covered by "good" insurance. It was before the ACA act kicked in...so don't go there.  It did not used to be that way!!

Today in America...we've hit a mean season. For myself and seeing my son go through this, never before have I known such cold disregard for people getting ill especially on the domestic spending legislative level.

There are a great many people in the community who understand and try to help, but the need is so great and we just came through a great recession/depression. Regular people are not back on their own feet and so resources are limited at best in the private charity care world. At the same time Congress and legislatures are cutting domestic spending at record levels.

And I have no idea what the heck is wrong with our state and federal government and the insurance companies! I don't care which side you are on...letting real Americans, (my son is not a new immigrant!) do without needed health care, or bleeding people dry when the need is so great because of a political pissing match and pure greed is just STUPID!  We are killing our own people faster and quicker than any terrorist or take over of this country ever could.  JUST FIX IT!  Create a system where those that are ill have access to health care and don't go bankrupt in the process.

Anyway, end of rant. I went to Virginia Aging and Rehabilitative Services this week, to sign up again for services because my blog work has me believing I might still be a contributing member of society and can make some funding to supplement the disability I get. Believe me, I'm grateful but it's pitiful!!  I MISS MY JOB AND MY JOB MONEY!!!

I need to try to take care of my son until something breaks lose for him, the medicine gets him better or something. He's applied for disability but because of his age, I bet they deny it. Just do anything I can to help take care of his medical needs, keep us in our house, the bills paid, and my link to the outside world...the internet. I signed up with my old case worker....see they helped me before. It's how I kept going and kept being a useful member of society.  Problem is, I can't work a regular job anymore, not even part-time. I would NOT hire me!

Just ask my family. I wear out quick. Plan a Sunday dinner, get it cooked and fall asleep and miss the whole darn thing. The kitchen is usually cleaned up and a plate waiting for me in the microwave. But that WASN'T my plan!

The old heart goes to beating funky and that's it...I'm done for the day. Or when I can't even move because of pain. Yeah...those symptoms sort of hard to put on a schedule for regular work. I don't function on a regular schedule anymore. Used to be my medications kept me going...that doesn't happen anymore.  There are no pills curing this.

Believe me, the body and symptoms, just won't listen or cooperate with me at all. I say, "I'm going to do this today," my body says, "You wish!"  Sometimes I can fight it, and do what I wish, but I really PAY for it...for DAYS.

So I have to be careful. I'm learning to juggle doing whatever I can on low symptom days. Rest up for big events. Do what I can, when I can. It's not unusual for me to be folding clothes out of a dryer at 3 am because it just so happens to be the time I am up and FUNCTIONING.  It bothers me to no end to let the rest of what I want to do GO!  But I try not to let it get me down. I'm alive...I woke up today, and beat out everyone else that died last night...it's a good day!

So I have been talking to friends about what I CAN do. Driving is not an activity I do well these days. After I came back from VA rehab, I set down in a chair and fell asleep for several hours. Wears me out!!

The blog is monetized with ads but I hate those that have so many. I might add one or two more. It doesn't produce much, but every little bit helps.  It was suggested I take the best stories of Appalachian Heartwood blog and put it in book and Kindle form on Amazon's Create a Space, ask for a donation.

I actually have part of a novel I was working on years ago. Maybe I can finish it and can get it out there too.

I can also try to put together some how-to videos. That came up when I volunteered at the Ceres Day celebrations in May. I didn't last long demonstrating corn husk dolls, as my illness showed up and cut it short. I've been demonstrating crafts and showing thousands of folks how to do these crafts for years, especially primitive stuff. Using video..I can rest and continue..have to show it only once and there you have it. Immortalized forever!!

Which I would be really happy to have certain crafts I do shared that way. I feel like when I'm gone, some of what was shared with me by my elders, goes with me and should be shared before that happens.

My son had an eBay store, he's been so sick, he hasn't had the strength to do anything.  I'm going to try to take it and work on it with him. He's going to have to walk me through most of it. It's changed so much since my day of fooling with it. Whatever crafts I make in the video's sell them on eBay or etsy.

Of course all these plans rely on whether we can function or not!! He's fighting not only symptoms of the disease but of the medications. The medication they have him on is an old cancer drug and it treats your body just as BAD!!  He has started to gain weight back which is good. But he is still in such bad shape.

But these are plans and we are going to continue on. We come from good stock I know it. We will survive this as our blood and kin have survived everything in this old world.

 Just a side note: our water is pumped from WV...sometimes it has a smell and sometimes it foams when you boil it. With all the stuff in the news about water, you can't help but just wonder if what is attacking us is part of what we are exposed to in the environment, genetics or past medical histories.

Genetics...especially for my son. He's always had some health issues too, since he was born. I was a strontium 90 baby but his father was a Vietnam Veteran in the Air Force. His father was considered non-combat personnel. He was on the big C-130s.  Flew supplies over and bodies back. Hit him kind of funny to hear he was non-combat, since he remembered the tarmac being shelled, bullets wiz by, his non combat personnel butt firing back and once a bullet embedded in his flack jacket.

Some of the supplies included Agent Orange and Blue and various colors of the rainbow in barrels. Sometimes the barrels leaked and his father's boots would get wet with these chemicals. His feet and lower legs would break out in later years and look like raw hamburger. But since he was non-combat personnel he couldn't get treatment at the VA for it. Civilian doctors had no idea what to do for him. I remember one doctor saying he could not get anything out of the VA for any ideas either. Lot's of steroid treatments.

You search for answers, because these are weird diseases, that the doctors are scratching their heads. Treatments to continue living are today expensive but solutions can be found.  But such is life and we go on. We are not defeated nor dead YET!! When I get some of this work accomplished, I will post on my blog and I will appreciate a share or two. Plus any ideas out there...let me know!!

March 27, 2014 Update, Sept. Kentucky Conference Coming Up and OW! My FACE!

Well after the Jenny Wiley saga of posts it has been a whirlwind first part of Spring. So sorry to be so lax on this blog. Much is happening at my house. First we are still waiting for SPRING! It shows up in a couple of warm days and then SNOWS again.


I wanted to share this post I found on the Jenny Wiley thread at Rootsweb.  It is a conference this coming September 2014. I would love to go but I doubt if I will get to. Three days? Sigh....I'd be the one babbling in the corner too tired to communicate.

Date: Wed, 26 Mar 2014 13:59:23 +0000

Dear Jenny Wiley listserv:

I would encourage everyone interested in Jenny Wiley to attend this year's Eastern Kentucky Genealogy and History Conference, which is going to be held in Louisa, Kentucky from Friday, September 19 - Sunday, September 21, 2014. There is going to be a special presentation on the historic Jenny Wiley and many people in attendance descend from her and know a great deal about DNA research. I will be doing the presentation, along with others, and we hope to have a lively conversation surrounding the life of Jenny Wiley, as well as how to interpret your DNA findings. For more information on the conference, please contact my cousin, Victoria Moore, vice-president of the Lawrence County, Kentucky Genealogical and Historical Society atbhictoria.ni.omordha@gmail.com. The conference is going to be held at the Community Center and meals will be catered. The entire event is very affordable and well-worth the travel, if you must come from very far. Many Jenny Wiley (and Hezekiah Sellards!
) descendants attend.

On another note, if you care to support the republication of the classic "Appalachian Crossroads" (the Hezekiah Sellards genealogy, which has been out of print for 30 years)and the efforts of the Lawrence County, Kentucky Genealogical and Historical Society (LCKG&HS) to keep our Eastern Kentucky history and heritage alive, please visit this Go Fund Me campaign page: http://www.gofundme.com/7t8byg . There is more information on what the LCKG&HS is doing and services they are providing.

Many thanks,
Melinda

Melinda Moore, Ph.D.
Clinical Psychology Postdoctoral Fellow
Military Suicide Bereavement Study
College of Social Work
The University of Kentucky
Lexington, Kentucky 40506

I hope those that attend can update me on any new info. I am really curious as to where the Jenny Wiley research will go. So far no luck on the deposition. Any one finds that PLEASE share with me!!

Interpreting History

Will the Real Jenny Wiley Please Tell her Story?

Where was the Cabin of Thomas and Jenny Wiley?

Update on the Battle with CFS continues! 

I am just battling symptoms as usual. I have muscles that hurt that I didn't know could hurt before this disease attacked me. Like facial muscles. Anyone else experience this? Any and every muscle in your body can be affected by this disease. Quite annoying to have twinges of pain just show up!!

You can be talking to someone and all the sudden you contort your face because of a twinge of pain. Oh yes so annoying to be asked, "Are you OK?" because you are making involuntary faces at them in the middle of a conversation! Have to say, "Sorry, twinge of pain in the muscles that control my eyebrows. So sorry to have to twitch them like Groucho Marx at you trying to get it to stop! It will disappear I hope in a bit." I turn away because I know it's annoying to them to watch as much as it is annoying to me to experience. Those twinges feel like charley horses at times. So relieved when it stops.  Oh the joys of CFS/ME when even your face hurts.

 But also I am asking for prayers for my dear son who has been ill. He has been my rock. The one who has taken care of me a lot in my illness. Recently he started losing weight...a lot of weight for no reason and developed very large swollen joints.

He is in the process of being tested for numerous diseases. Between the two of us we have a doctor's appointment calendar that is nuts! So family, friends and my Ed have filled in for him and even helped me take care of him. A reversal of roles for sure.  I dearly love my family and friends!! They are awesome. But I am a bit more tired than usual.  There are many things I would like to do and work on this blog is one of them. I am working on a couple of posts and hope to have them completed SOON.

I am thinking of doing a few posts of links to good research sites I use. Also my family tree on here. Been asked about my people. That is the Appalachian way to ask, "who are your people?"  So stay tuned..

The Search for the True Story of Jenny Wiley

Well let's hope this post will make sense to all. Please forgive me if it doesn't and feel free to ask questions, make comments, correct things or even have any ideas on furthering these articles to help. I say that because I'm working on this series battling heart problems and chronic fatigue. I'm having some sort of relapse this week. It's a wonder I got the last post out. I even I slept through Sunday Supper!! One minute they said it was ready, the next thing I know it's 10 at night!! They saved me a plate but I missed seeing my family until next week.  My mind says, "We will do this today", and my body says, "YOU WISH!"

I so admire those that can be prolific bloggers and writers who post every day (365 a year) or even once a week (52 a year). That is NOT me! This blog to date has 44 posts published, 9 or 10 drafts in process and that's been since October 2009!! The shape I'm in....won't change anytime soon..... but that's OK. Do what I can and be thankful to be ALIVE!!

My bed right now is covered in history books, copies of documents, notes and files with my laptop.  I get wore out so easy. I MISS MY HEALTH. Just trying to keep up with everyday simple tasks and concerns and I fall asleep right in the middle of all of this all the time. I'm always afraid I'm going to break my laptop by knocking it off the bed!

I can no longer get out and perform the research that needs to be accomplished to discover the true story of Jenny Wiley. That's why I am putting an effort to putting out there what I had discovered so far, before getting so ill, with the hope other researchers will join together and continue the task, to uncover what is true and what is fiction. The Jenny Wiley story deserves this. It is past time that her story receive intensive research from the historical community. I hope they will share with all of us what they find and not hoard it either. Pox on ye, if ye hoard it!

The next Mystery Monday post will have most of the research I have, especially concerning the location of Thomas and Jenny Wiley's cabin. I am working on that post, it's why I can't turn over in my bed!! I can't remember things like I did. I'm looking for articles to use I wrote before I got sick. Much on this blog was written before I became ill.  My memory... it's a toss up to old age or disability but it's a pain to have to keep moving the books when you are tired anyway.

The post after the cabin location is going to be what areas need to be worked on. This is going to need researchers from Kentucky to Richmond, VA to as far away as Kansas and Wisconsin.  I have a new friend in Richmond who is working with a list I sent her of notes I'd made for areas of research before I had to quit. If there are others who are interested please contact me especially if you can read the old writing in original documents. There is a ton of research to read through and maybe folks will team up in these areas.

This story is also going to need Native American scholars, historians and researchers to shine a light on this time period and this event. Contrary to popular belief the Native Americans of this era were not primitive savages, actually they were just a different culture. After European contact, there were assimilated Native American farmers who had cabins and lived much in the way the first settlers did. There were those who were of mixed blood, educated and lived exactly as the Europeans did.

There are deeds in our own county that date from the late 1700's that list, "the abandoned Indian fields" or "the Indian fields" in certain areas. Fields=Agriculture. Wolf Creek Indian Village was an agricultural community 500 hundred years ago.  I am beginning to understand it wasn't the untouched, uninhabited "wilderness" we thought of it as, nor just used as a hunting ground by Native Americans. There are those who gave up their tribal status, became American citizens and stayed in these mountains. Research in the Bland County area needs SO MUCH more work.

Crop of Benjamin Stewart's July 11, 1791 Montgomery County Grant (land is in Bland Co today)
mentioning the Indian Fields under Rich Mountain. Land Office Grants No. 24 1791-1792 pg 239 reel 90
Library of Virginia

So bear with me. What I have on the cabin location, explaining land grants etc. I'm going to try to publish by Monday. I am sleeping with books to get it done!!

It would be so cool to have some history show or documentary crew want to do this and pay top notch researchers to get it done. But since we don't have that, those of us who love the Jenny Wiley story and for years wanted to know as much of the truth as possible can delve and try to discover it ourselves.

Two questions. Does anyone know if the Jenny Wiley Association is still active? I tried to contact them 3 years ago and never received an answer.  Last week tried to email again and it bounced back.

Second, are these documents showing up enough through Google for those that want a copy of them?  You can test it on the last post where I posted the original letter of J. D. Smith to Governor Beverly Randolph.  Thanks

Until next time. Blessing to all.

Appalachian Native American Stories to Tell

There is one area I will be delving into in the future and it will not be easy. Not only because of the shape I am in, but also because it is a part of history that is just not easy to research or tell, but it's on my heart. That is what I know about the history of Indians in Appalachia.

A Native friend called me today and asked me if I had seen the special on C-Span about Werowocomoco Village. Powhatan's chief residence that was recently identified in the last 10 to 12 years. They are preserving and studying the site which is located on the York River and is SUCH an important historical site for Native American history in Virginia. Most of the tribal chiefs of the state tribes in Virginia were there at this event whose tribes were once part of this federation of tribes that dealt with the colonists at Jamestown. It brought up the remembrance of a long neglected history of our Appalachian mountains.

How many of us have the oral tradition that we had ancestors that were Native American? Yes, I know, there are many who laugh at that. Mainly because all we have are stories and not the actual proof of that history. Though DNA is helping. It is always told to be Cherokee, which those in the Native American community ridicule each time they hear it. I understand, but the history of the Cherokee in this area is pretty predominant. John Ross, one of the chiefs of the Cherokee at the time of removal in 1836, was actually 3/4 white and many were especially in the North Carolina mountains connected to that tribe.

I also think some of that is because in the early 1900's the Cherokee plight became so well known that the actual history of Native Heritage became mixed up with, "they had to be Cherokee". So many of those who did have a Native ancestor in the mountains had become so assimilated into white culture. They did not know the history that so many tribes were wiped out of existence. They didn't understand that the Cherokee were not the only tribe here or connected to Appalachia. 

It is also talked about as if it was most recent. When it could have occurred generations ago before the removal policies. It is also hard for those who are west of the Mississippi, in a later history that included segregated reservation systems, to comprehend what it was like to live in the East prior to and after those removal policies. But those stories need to be told.

In my own family it was something not to be talked about but more to be feared if it was found out. We knew and that was enough. In Virginia especially there was the assimilation with not only white but black ancestry with the persecution that follows that.

Natives were people of color.  I once was helping a woman trace her family tree. In some of the records she found, their family would be listed as white. In others listed as black or mulatto.  She did trace to some Saponi names but was quite upset when I told her they would be at times listed as people of color. She told me, "Those records could not be my family," because, " my ancestors were "white" Indians!" 

I really don't know what that is. Though it's popular today to claim Native ancestry, it is hard to get folks to understand this aspect of who they were and the times in which their ancestor had to live.

Mary Kegley wrote a wonderful book entitled, "Free In Chains", the story of Rachel Findlay who was Native American and enslaved. It is the story of Rachel and her family going through Virginia courts to gain their freedom before the Civil War. It is hard for some to come to grips that Virginia Indian history is tied to black history.

The records of Virginia and America still need to be combed to find and verify the history about Native Americans in Virginia and the mountains. It would also have to be an international search with England and France records, prior to the Revolutionary War. Plus we know there was a time in Virginia records were destroyed to hide native ancestry.

The history of the Native Americans in Virginia is a very long one and in modern times very much tied to race issues. In Virginia, we have a history of eugenics in our state government that had a big impact on Native Americans in our state.

But they are STILL HERE and we who are descendants are still here! The Virginia Indian Tribes the Pamunkey and the Mattaponi actually have the oldest reservations in the United States but they are not recognized by the federal government. They have fought to keep their culture and history.  An interesting article click here for the Pamunkey. One of the best sources about Pocahontas's people is to read Helen Rountree's works. But we are in the mountains and that story is just not yet written in it's entirety. Historians and researchers today are only scratching the surface.

I remember as a child looking at maps of where the Native Americans were located in the United States and always so disappointed because our part of Appalachia would say, "Unknown Tribes". In my research I have found it wasn't as much an uninhabited "wilderness" as once thought.

Wolf Creek Indian Village and Museum, where I worked, was based on an actual archeology site in Bland County. It was the first state recognized archeology site in Bland County but didn't occur until 1970. We are way behind the coast of Virginia on documentation and archeology in telling the Native American story in Appalachia.

I hope in the future to tell the story of what I know about Native American history in Appalachia, but this Chronic Fatigue Syndrome is an awful disease. No two ways about it. It has robbed me of so much. There are days when I can hardly move, days when it is an effort to get dressed or do the simplest of things. Days when the sun is shining and I want to do SO MUCH and the old body just won't cooperate. I fight it every day and I can tell you it is no fun to feel like I have the nightmare of this achy awful flu that never goes away.

This blog I have to say is kind of a saving grace. You see, I was just laying around, trying to figure out how to get better. A lot of times just in tears because I just felt so worthless. I felt I had become this shadow of my former self. Days turned to weeks, that turned to months and now a couple of years since I felt really well. The internet and TV were all I had. This spring, when I found my blog again, that I started before and just as I got ill, I thought ...ok I will just share a few things on it and tell some family history to see how it goes. It will be something to do, other than cry and watch T.V.

Little did I know that it is has become something I can put my attention on, rather than just laying here hurting and being sick.  Even when the illness is so bad and I can't even think. At those times I don't write too well I have to go back, edit, over and over again. But I feel I'm on a mission once more.

If you all see any sentences that are backwards, literally, please tell me. My thought processes with this disease are really weird to me. But though it is a real challenge to do this, it's giving me new hope. That my life is not over. I'm not totally useless.  Especially the nice comments I have received from readers. SO THANK YOU! THANK YOU ALL.

I can't be as prolific a blogger as some. This week will be 3 posts...whoo hoo.... been the most I've ever accomplished.  I know I have several hundred articles in me with added recipes and crafts. Yep, I can keep this going for quite a while.

I don't know how much I can do these days to expound on these things. Being ill has hampered me in more ways than one. I miss the ability to do my job and I really miss my job MONEY!  I will be limited to research on the internet, and as long as I can keep the internet on, it's a story I will surely try to tell.   I hope you will join me for the journey.

Copyright 2007-2016 Denise Smith

The Fatigue of Chronic Fatigue Syndrome

In dealing with any illness it is the symptoms that make it worse. In this blog, coming up on July 4th, 2013, I have about 9 drafts of articles and each one I have quite a bit of material for. With Chronic Fatigue Syndrome, (what they ended up giving me as a diagnosis when I didn't recover from the virus's I had), and heart problems, the worst part is having the energy to put together those ideas while being so tired.  When you are tired the brain fog takes over and so I have to work when my mind is not as tired or the articles won't make sense. Even to me.

I went to my doctor's this week and his frustration is the same as mine. There is no cause for Fibromyalgia nor CFS and thus no cure. All he can do is treat symptoms and those can change on a daily basis. What is the connection to the two diseases or to tick diseases? I was diagnosis with Fibro years ago and laughed at it. I thought it was more my working 2 jobs, while going to school full time with 2 kids and a disabled husband as the cause of aches and tiredness. Worked for years with it before developing full blown Chronic Fatigue Syndrome two years ago.

But research on these illnesses are coming out. Some hope comes through in articles like this: Cause for Fibromyalgia mystery solved. Vascular... imagine that as a possible cause. We have hope that one day the causes and cures will be found. In the meantime I juggle symptoms while trying to live some kind of a normal life.

So I thought I'd list some of the articles I'm working on. My last one...thank goodness I had been working on for a while. Ya'll tell me if this blog gets too disjointed and doesn't make sense. Be my editors so to speak.
Articles In Process:

Jenny Wiley story - Jenny Wiley was a woman who was captured by Indians in 1789 in Bland County, Virginia and taken to Kentucky. Quite a famous case in our area. I was working on that research when I became ill. I am still working on it but writing as I go. It will take a while to get that post up because there are some loose ends and it depends on my brain as to whether what I find makes sense but I am getting there. What I'm learning so far is the official story is a bit flawed and I have to verify those flaws.

Ned Sizemore Clan- You are Native but You Can't Claim That Tribe -  Many folks in my area are kin to Ned Sizemore who was a Native American out of North Carolina. His family applied to claim on several different rolls for benefits and recognition. Each one was quite odd in that none of the commissioners denied they were Native, they just denied them rights of each tribe they said they belong to. A new Melungeon DNA project proves their Native blood line. I'm working on that article to discuss the problems with Native American Appalachian Ancestry and trying to have a connection or recognize that. This one may be two articles. I am toying with that.

Search for Grand Dad's Music. This is the story of my Grandfather Wesley Bane Boyles who was a member of the West Virginia Coon Hunters. A band that played at the infamous Bristol sessions in 1927. The Birth of Country Music. This one is about finished and will be posted first. Mainly because I wrote most of it for the family years ago.

Moonshine Beneath the Pale Moon Light-  Story of moonshiners in my family gathered from news articles and oral history.  I'm trying to record the song Copper Kettle (kind of the family anthem) the way my grandfather taught me. But the old mountain dulcimer won't stay in tune. And these days I sound like a bathtub baritone, great sounding under water!!

Outhouse Stories- Build it Down Wind of the House, Boys -  This one is a further take on the outhouse in Appalachia. With stories gathered from family and friends of their experiences with having to use an outhouse.

Places in our area. Different events places I visit. Have a couple of those in the works. Have to promote our AREA!!

And many, many more.  But I am tired this week. The illness is beating me up pretty good. So I will quit for now. Some have asked why I don't write a book....well I am doing that too... a novel...began years ago.

But I don't know what the future holds. This illness has thrown me for a loop.  It is more important for me if we are going to dispel the myths about Appalachia than Appalachian people are going to have to tell their stories. This is just my family and mine. There are so many good Appalachian bloggers. I really enjoy +Dave Tabler blog, +Gary Holbrook website and Granny Sue the storyteller and antique hunter. Please spread the word and subscribe to all of us. And if you have one about Appalachia let me know. I want to do a list on the side bar to promote that too. Blessings to all.

Put Your Back Into It, Save your Strength!

The other day I was looking at something on the internet and came across my OWN blog! YES, it's been that long since I've even thought about it. I sort of forgot I had one. Which for me is normal these days. My illness does keep me in a "brain fog" most of the time.  As a matter of fact my illness (s), (there are more than one) have taken up most of my life these days....and to tell the truth...I'm tired of sickness taking everything.

I am a shadow of my former self. I've spent my time trying to figure out how to live with these disabilities. What can I do now that my body is really messed up? What can I not do, that I used to do so easily? I am learning I can do things, just in small chunks not long marathons. If I try to do a marathon....well then it's going to be a marathon recovery for DAYS. I can work eight hours as long as I'm given 24 to 36 hours to do the eight in! 

My days are full of trying to accomplish one or two things, then rest, do something else, then rest and hopefully at the end of the day not be in any pain so I can sleep which is a whole other problem. So many symptoms it's boring, daunting and sometimes downright depressing.

But in trying to deal with this new life situation something came to mind. I'm the family historian and I've still work to do. How do I do it in this shape?  I remember my mother loved to rearrange furniture at least once a year. I might rearrange once in a blue moon and I think that is because in my childhood, being a military family, we moved all the time. Add mother like to move furniture just for kicks and there you go.... once in a blue moon was enough for me. I have scars for life because in doing this task she would require all us children to help.

Dad did not participate in the moving but would notice this moving of furniture when he came home late at night and tripped over something that had been somewhere else when he left. 

Yet I remembered in the moving of the furniture my mother was quite creative. She would use blankets placed under heavy furniture on a wood floor and we would slide things in place. She would take anything on rollers and use it as a dolly. One plant stand comes to mind because we would have to wrestle the tree off of it and use it and then it took three of us to put it back!

But one thing she would tell us instead of using our arms to push something heavy was to, "Put your back into it, save your strength". Meaning place your back against the furniture and push or use your hip not your arms.  Well with these disabilities, I feel as if it is like moving heavy furniture with even the most mundane tasks.  I just have to learn how to put my back into it and save my strength. Do what I can do the best way I can. Find my blankets and roller plant stands and not to worry about how it looks just as long as things move!! 

We are an OLD Appalachian family with many, many stories. The blog has a draft mode and I can use that. But I have boxes of stories to tell. Thousands of pictures to share. Piles of research I've accomplished in 30 years. Tons of topics to explore.

I started this blog with the intention of telling those stories of family and places I know. Well I still want to do that. So what if I only get out a post a month or every other month? It's the effort that matters. I'm not dead yet...just sick. I can still live with that!

Appalachia And Make Your Own JOB

My favorite J.K. Rowling quote I am a big fan!

I have to say I LOVE my family. Without them I would not be. This is an update to my posts. My word we just went through one heck of an election. Not sure it's going to help us. Every election we still are the same people just trying to make a living and live, doesn't matter who is in power.

But my illness has effected every part of my family and our finances. My daughter and son have stepped up and help in so many ways. Family and friends have contributed to the cause without which we would not have made it. I did get my disability and that was amazing in itself but I can definitely say I miss my job MONEY!! I MISS MY JOB! I wish this had never happened. But just another way of living. I'm not getting better just trying to figure out how to live with this and hope one day to wake up and be better.

My son has had to really step up and take care of me. Bless his heart. He has other things he could be doing. I don't drive and so he plays chauffeur and does a myriad other chores.  He lost his job basically trying to take care of me. But he is very resourceful and instead of trying to find an outside job that he would have to explain taking off for doctor visits, etc. and take care of all he takes care of, he just became self employed.  He just finished a temporary job that paid the house taxes and caught us up fairly well. He's also selling things on EBay. Are we getting rich? NO! But we are surviving and that's why I'm writing this blog today.

He's become a small business.  A VERY small business but a business none the less. And it's a business that new technology and the Internet has made possible for those of us in Appalachia.  It amazes me, though people argue about the cost to sell on EBay, the market you reach is just amazing. National and International. He just sold stuff we have laying around the house. One man's junk is another man's treasure kind of thing.

I'm very proud of my family and he's proud he can still work, take care of family and pay taxes so no one can call him a "moocher". For me it's a chance to teach him what I know about business that he doesn't. I lay in bed and teach him book keeping. Which I know when I go into "Brain Fog" mode is frustrating because I don't make sense to myself much less able to try to teach him what I know about forms and taxes. But we get there, though it is an ADVENTURE IN COMMUNICATIONS. If you've ever had someone with this illness, brain fog is one of the hardest things to explain or deal with. Takes much longer to accomplish a goal.

His actions gives me hope even for myself. I want to defeat this illness and if I can't defeat it find something I can do to still contribute to the common good, in the condition I am in. I may not be able to control this illness and have to juggle around good hours and bad minutes but I'm still alive and what I can do, I will do. It's a trip trying to plan dinner or a trip to the store much less working. But I am still trying to function.

But it is a different way to function. For example, two years ago before I became ill, I bought paint to paint the wrought iron on my porch. A job normally that could be finished in a day or two if I had to scrape old paint before painting. I decided I would get that job accomplished myself. No matter my illness I was going to do something. That job took me THREE WEEKS and it still needs another coat! I wouldn't let anyone help me and I did it. Sometimes with great pain but I did it.

But these things I try to accomplish lately all have taught me if I find a job in the shape I'm in, it has to be one NOT on a time table. One that you don't have to be quickly reliable, just get the job done..... eventually. In our fast pace world there not many of those out there that work on your bad health's time table. For someone who was very physically active and was "busier than a one legged woman in a butt kicking contest" it has been the worst part of this whole illness.  The limitation that my body now has. I am on my third day of writing this and I hope with not too many mistakes.

But the internet may be my answer. May be my prayer and for others in Appalachia since we don't have much mass transit, it may be an answer to alot of things. My focus is getting my health better. Have more tests coming up and I swear the medicine is worse sometimes than the disease. But my son's new business is encourging and I can see maybe a little light shining in the tunnel.

A New Way of Living

Me Summer 2011 at Wolf Creek Indian Village and  Museum.
 I had to rest a lot on the job. Not at all like me.
Photo courtesy of Shirlene Thompson

My New Life - Living with Chronic Fatigue Syndrome

I have unfinished drafts of blogs pending and I hope to finish the Native research saga soon. It is funny how life changes so quickly. You have this plan you see in front of you. Things you are going to do, sort of a murky future but you know pretty much what you want to do. Well life is what happens while you are making other plans.

I had a job I dearly loved to do. Fit right in with my love of history, then I got sick.  I had worked at Wolf Creek Indian Village and Museum for 12 years. I was their curator, guide and programs manager. I had just worked up to having salary and benefits and the village was being rebuilt, my work was rewarding. Life was good!

Then it hit. One hot summer day last year, I had  a really irregular heart beat. It was strange, I'd never experienced that before and this sensation stopped me in my tracks. It was like for a moment I couldn't breath, couldn't move, but then would go away.

Then other things started happening.  I walked quite a bit in my job since the museum village was 1130 feet down the hill. At least 3 times a day I would make that journey. But all of the sudden a walk I had taken probably thousands of times seem to be a very big chore. I had to rest on my way down the hill and definitely on my way back up. I wasn't moving like I usually did. At first, I blamed the heat. After all it was July some day's nearing 100 degrees.

But I was having problems focusing too. I lost what I was saying. Could not get the words out or forget what I had said and repeated myself. Visitors were asking me if I was alright?  I had to sit down much more than I ever did on the job. I was also so very very tired, with aches and pains and heart flip flopping every day. 

This picture was the year before my illness at the Bland County Festival of Leaves courtesy of Goldie Kiser. I was always described by my family as "Busier than a one legged woman in a butt kicking contest!" But I was changing and the change was dramatic.  I wasn't able to keep up my work, my family, my duties. Looking back on those first few weeks I didn't know what I know now that I would not get any better.  That what began as something I thought was just a fluke  or would pass would turn into an illness I'm desperately trying to deal with and recover from and it has since July 2011 changed my life. 

I ignored all these symptoms for a couple weeks and then I started having arm pains and neck pains along with an irregular heart beat. Well I wasn't thinking heart attack but I knew something was wrong so one morning before work I decided to pop into the clinic and have them check me out. Well that resulted in an ambulance ride!! Because they thought it might be a heart attack. But it wasn't a heart attack. All they found that trip was that I had two leaky heart valves but they thought that could be controlled with blood thinners. It wasn't that serious they said.
 

Ok, Let's Get Better

 Well I slowed way down. Had to. My body just wouldn't GO!! I slept A LOT! I kept going back to the doctor because I wasn't getting better. I kept complaining of being so tired and my heart still flip flopping as I call it. They ran more tests and the first ones in late August showed I had mono and I was in the late stages of an event of mono. It was great.... I had a diagnosis that explain being tired and one people get over. Okay I thought, with time I will get better!

Now I took some time off but not much. I understand many take weeks off with mono, I didn't know I had it at first, and the doctors said I was about over it so I didn't take that much off.  I had already worked in 90 degree heat outside with mono. We were rebuilding a village at Wolf Creek Indian Village & Museum where I worked and I loved that part of my job and wanted it finished.

Throughout the late Summer, Fall and Winter, I gave myself some slack. I tried to arrange things when I felt better, took breaks when I was feeling really sickly, thinking with time hoping it would go away. Instead I got WORSE and I have never recovered.

I am so tired all the time, still is one of my worse complaints. I can sleep 16 hours and wake up tired. There were times when I came home from work I fell asleep in my car or woke up on the couch fully clothed, sometimes coat and all, not even realizing I came home and crashed. Every evening and any day that I had off I usually did nothing but sleep.  Everything at work and at home fell behind.

I was having an extremely hard time focusing, lists upon lists and I'd lose the lists. I didn't think it could get worse but then I started having fog outs or what they call "brain fog" in my car and realized this is not normal and in a 3000 pound moving car, it's downright dangerous.

I really became concerned....actually the word is downright SCARED.  Why? Because I didn't know what was wrong and I had no control over it. I really thought I was losing my mind. Maybe had the beginnings of dementia or Alzheimer's disease.

OK, NOPE LIFE HAS OTHER PLANS FOR ME

And thus has began a journey of a different sort.  A journey I didn't think I'd be taking this year. Lot's of doctors appointments and so many tests. Six or seven doctors and counting. Each test coming back with negative results, just the Epstein Barr Virus that caused the mono in the first place. Weird symptoms like a low body temperature, headaches, aches all over my body all the time STILL.  

I ended up having to resign my beloved job and file for disability because I couldn't keep up. It has consumed my life for months now and turned it upside down. And it has become an illness that began as something you can define to something you can't really define but is recognized for lack of a better word, as Chronic Fatigue Syndrome.

I have always for the last 20 years or so had some chronic medical problems. Yes we all have medical problems from time to time, but my Protestant side of my families work ethic says you keep going. You work around your sicknesses and keep going.  I have a back injury that gives me a fit and if I am not careful my back goes out more than I do. But you deal with it. I went through rehab to learn to deal with it and worked for 12 years with that condition.

I had a doctor once diagnose me with Fibromyalgia in the 80's because I complained after getting over a flu that my body still felt achy all over and wouldn't stop. After he gave me that diagnosis I read up on it and they called it then the "Yuppie flu". In the 80's many Doctors didn't take that illness seriously so I didn't take that diagnosis seriously either. It was like a catch all for symptoms when tests could not find anything wrong with you. My tests at that time were normal.

I chalked it up to I was just tired and wore out as I was holding 2 part time jobs, going to school full time, trying to take care of 2 kids and a disabled husband. I now realize I have been having bouts of that illness from time to time but I just kept going and muddled through.

I had this wall plate that said, "Activity is Nature's Medicine".  That was my motto. Eat better, rest when you could and keep going. Maybe that was my mistake.
 

Share for the sake of Myself and others

The reason I am sharing is because people who know me didn't know what happened.  Plus during this it has been others sharing their stories that have helped me realize I'm not alone. I have read things that were inspirational and heart breaking. I have read about the controversy from critics and supporters from all over the world.

Sometimes takes me a while to read because when the "brain fog" really kicks in, you don't comprehend much.  I have in my favorites file on my computer lots of articles to go back to when I forget or find myself reading a paragraph over and over and still not be able to understand it, I go back when I'm in a better frame of mind. As a historical researcher that part of this illness is really BAD!!

This has become my new job. This illness has become my real new hobby. Trying to defeat this illness is my new goal in life.  My thought is if there is ever going to be a cure for Chronic Fatigue Syndrome or Fibromyalgia or any of these misunderstood illnesses it's going to be from those who have it and their families. We have to be willing to talk about it, to fight the misconceptions and push for a cure.

Blow it right open that it's not in your head!!  After reading an article from a researcher that basically said this is mostly psychological, this guy disagreed with everyone Else's work.  I asked my doctor if this is in my head, please send me to a shrink so I can get it taken care of!!! It's an awful illness that robs you of everything. I miss so much because I can no longer participate in my life.

I don't drive, I am house bound and many, many days bed bound.  Being in pain all the time, your mind in a fog and tired is just no fun at all. Basically I feel like I have a flu, a constant never ending, nightmare of a flu.  I wouldn't wish this illness on my worst enemy.

Thank God I have a doctor who recognizes it. There are many doctors who do not still. Even though the Centers for Disease Control has information on their website and knows it exists. The American Red Cross now if you have it doesn't want you giving blood.  

It does exist!  They don't know what causes it, they don't know how to cure it and they really have a hard time diagnosing it. Basically you have to go through every medical test known to man and rule out everything else and if you have these certain symptoms, then they diagnose you with it.

My New Life's Journey

It's taken me weeks to write the above. One of the things that is the most depressing to me of all. I have to write on a good day or a good hour or two when my brain works and my hands work. Oh yes, the symptoms to deal with are multiple on top of being tired. Day to day it can be different. Wake up and your body feels like it has a toothache or someone is giving every muscle in your body a charlie horse. Those are the really BAD days.

There is no predicting or scheduling or controlling these symptoms either. I can plan all I want, set goals all I want. The illness decides if I get to do any of them. After cursing and crying for weeks about this part I learned to accept that is just the way it is.

I am a strong person and I will learn to live with it, somehow defeat it where I can. I don't know how but the alternative is to just crawl up in a corner and let this illness get the best of me. I may not be like I was or ever be like I was but I'm not dead yet.  If anything of this doesn't sound clear, sorry that goes with the territory.

My doctor is going on a theory. He's thinking I had an infection like from a tick where I worked outside. I used to pull ticks off of me all the time. I was negative for Lyme disease but ticks can carry about 5 different diseases. But he thinks some kind of infection has got me in a cycle that is effecting the EBV virus.

By the way 98% of the world has the Epstein Barr Virus so you probably have it too. It can trigger everything from mono to lupus to a whole hosts of diseases or not bother you at all. He has me on another antibiotic this week. I hope it works, I hope he's right. I don't feel any better yet, but I'm willing to try ANYTHING!!

My problem is I no longer have health insurance. Cobra is way too expensive with no income coming in. I'm living off of my family and God bless my caring friends. I hope I get my disability because if I'm going to defeat this I need access to medical care and a way to support basics while I figure this out.

I'm going to try to finish the Interpreting history about Native Americans in Appalachia. I had 4 drafts started on 4 different subjects.  I was finding some very exciting stuff when I just had to stop.

My fear is I know with this condition I will make mistakes in that, but I hope all will bear with me, point them out and help me correct them. I have hope I will get better. It's just a different journey now. A different way to live.  But I am still alive and I have hope!!