LODGED by Robert Frost

            Wow... this is the most precise description of living with a chronic illness I have ever read.

 Lodged. A word that describes so many of our lives that have Fibromyalgia, POTS, MS or any of the other progressive thieves of your body and soul. You are caught somewhere between the land of the living and the land of the dead. I suppose it is the Shadow Land.... a place of near invisibility yet you still live and breath. A place of deep sorrow for the mourning of the life you once lived both in body and spirit. But there is no memorial for your loss, no casseroles to sooth the aching hunger and no accolades or eulogy for the person who you once were.  The place of eventual rock bottom, acceptance and grace. A place of being unrecognizable to yourself. 
 Lodged. A word impossible for your friends, family and coworkers to truly understand. "Just get out and walk a little and you will feel better". Oh if it were only that easy. Would I cocoon myself into a web of despair, loneliness and isolation if all it took was a little walk?
Lodged. A place to heal the new you that must rise from the Shadows and meet each day because you have no other choice. You may have children or a job that doesn't understand being Lodged. The new you functions one hour, one day at a time. After the pelting and pushing of the life forces and the responsibility  around you, eventually the sun will shine and pull you a little at a time toward its warmth and soothing touch. You may even join the land of the living for a day or so. But inevitably, the wind and rain will soon pelt you again. So you rejoice in those small time frames when you catch that glimpse of the true self that visits for a short period.

As you can tell from the above purging of emotions, this past summer has been particularly difficult for me. I realized I haven't posted on my Blog for months, simply because the thought of the purge was too overwhelming and tiring to consider. It exhausts me to write, and yet it revives me. A conundrum for sure.
The summer began with a breast cancer scare and the beginning of a major flare in my symptoms. A routine mammogram revealed a change in tissue in the exact spot where my mom had her breast cancer. It began a month long series of more films, ultrasounds and finally in July the biopsy. I am thankful to report it was negative, but the stress of it all knocked me to my knees. Lodged.  I am still trying to pull myself back up from that event. I continued to work every day during the flare. I know I should not push myself like I do, buy I don't want this guy at my door:

BUT YOU MUST PAY THE RENT!!!

COME OUT, COME OUT wherever you are....from hibernation, that is.

My oh my how time flies... I can't believe it has been months since I have been to my blog. After my last entry in January, I seem to recall doing this:

Me with Blankie and Pillow heading for hibernation

Im really not sure what happened....I just remember taking a Fukitol pill and surrendering to the warmth of my home and hearth. January, February and March seems like a bad dream.Then suddenly it was April.

 I don't need to tell anyone with a chronic illness how bad this winter has been for those of us with fibromyalgia/autoimmune/dysautonomic issues. Not to mention all the lovely seasonal affective disorders like depression and anxiety most of us battle. There were days I could barely make it to work and back home and collapse at 7pm into my favorite place, my bed - Ahh...my refuge, my inner sanctum and my faithful friend.

Thank God I can sleep, so many with these illnesses cannot get any sleep. I do sleep, albeit non refreshing sleep. Sleep studies  have shown that  people with Fibro do not  go into the deep restorative sleep of Delta sleep or stage 4. I have had two studies  and the doctor said I only stayed in stage 4 sleep a maximum of  90 seconds at a time and then started the cycle over. Her response was "no wonder you are tired." That was over ten years ago and now much more is known about the link of sleep deprivation and Fibromyalgia. I also have had a very difficult time with my blood pressure and my Hyperadrenergic POTS condition. My family Doc referred me to a cardiologist in Knoxville for some testing. I was having some wicked jaw and radiating neck/shoulder pain and my bp was hovering around 146/110- that is with two blood pressure meds each day. So I now have a new Cardiologist helping in my POTS treatment, Dr. Mahlow at the University of Tennessee. Very nice young man who has some knowledge of POTS and at least was aware of the condition and had some lecture time on the syndrome at Johns Hopkins. He is the first doctor in my life that has ever looked at my chart with interest and asked pertinent questions. He also said  " I'm so sorry you have this, I hope you will let me try to help you manage it and work with  your doctor".  He set me up for a chemical stress test and started me on a third BP medicine which so far has kept me in the normal to low range. My tests came back normal so I am back to managing the symptoms of POTS and trying to keep my stress levels below the "Thar' she blows" line.. hard to do in my job.
Anyway , we have survived the winter, and spring in the Great Smoky Mountains is beautiful this year. The Dogwoods and Redbuds were absolutely lovely and the botanists at the National Park have stated that the wild flowers are the prettiest that they have seen in over 40 years.   Every April the Park hosts the Wildflower Pilgrimage and thousands of people flock to the area to see the wide variety of wild flowers that thrive in the Smokies for a short lived life. I have attached some beautiful photos from the Great Smoky Mountain Association's Facebook page. Even though I live here, I sure don't feel like exploring the mountains. I have noticed many people in other countries view this blog, so I say a big  Tennessee "Howdy" to you and I hope you enjoy the photo's below.

Dogwood and Deer   Cades Cove  photo by Deb Campbell Photography

Pink Lady Slippers

Shooting Stars

Trillium

Showy Orchid

 And along with the wildflowers, comes the emergence of other critters(other than me) from hibernation. The black bears are out and about. Below is what I can only say is a once in a life time photo opportunity. It was taken last week in Cades Cove.  A large bear was feeding on a wild boar carcass while a coyote patiently waited his turn to dine.

How amazing is this?

 I am so glad to be able to show this photo of a wild American Bald Eagle in the Foothills Parkway area.
When I worked in the Park, there were no Eagles in the wild in this area.
 
The past couple of  months I have been doing some major spring cleaning with the help of my friend Lisa. Mainly she does all the hard work and heavy lifting. I have always wanted to clean up my barn area that was used in my other life as a storage building/hoarding facility by the ex.  It's a beautiful old barn. Probably built in the early 1940's but it was packed with everything you can imagine. Old rusted tools, lawnmowers that didn't run,car parts, etc... he never threw anything away.  It was so cluttered it made me physically  sick to look at it, so I simply didn't  look for years. I often think how I was left to literally clean and sort all the piles of debris that was my 25 year marriage. I was not only left to clean up the emotional issues and untangle painful  webs of  deceit and lies, but I was also responsible for the tangible piles of flotsam and jetsam left in the wake of the divorce. He moved on with minimum baggage to start a new life. I suppose a stronger and healthier woman would have worked her way through the mess much quicker but it has taken me 8 years. First I tackled the house and slowly made it mine. The barn and storage area have been on the back burner because it seemed such a monumental task to take on. When you're  too tired to live, cleaning is not a priority that is high on your list. But I felt like it would release a huge emotional burden I have carried and remove the last evidence of that life from this property.  So I called and got an industrial dumpster delivered in late March. Thank God for good friends and I have one in Lisa. We started first grade together and have stayed close as sisters since then.  She and I have worked a few hours at a time when the weather permitted and my health allowed and we are now on dumpster #2. She knows my limitations and understands when I say "I have to sit" or "I'm done" that we are through for the day or I need a rest break and water. I think the barn represents my resentments, anger and unresolved issues. The need to clean and clear that barn drives me like no force has in years. It has energized me to a certain point.  It's the complete burial of the past, the purging of my soul,  the last pieces of rusted dysfunctional memories being hauled  to the land fill where they belong . Maybe the barn is me...conquer the barn , conquer myself.  A wise man told me many years ago, even before the divorce,  to get that barn cleaned out. He told me  it held a much deeper, spiritual meaning to me. I didn't understand at that time, now I do.  I think he would be very happy to know it is done. Do you have a barn in your life that needs a spring cleaning?

       

Another Auld Lang Syne

On New Years Day I spent the day watching old Twilight Zones on SyFy.  I happened to notice one of my journals on a table. In the front were the dates 2008-2011. On New Years Day 2008,  I spent the day watching old Twilight Zones on SyFy- then again in 2010 and 2011. I didn't bother to write anything on January 1st 2009, but I'm pretty sure I watched Twilight Zone all day. I noted in 2008 that I had to get Kleenex for two episodes: Kick the Can- where the old folks in a nursing home dare to go outside and play and they become young once again and The Hunt- the old mountain man and his coon dog who die in an accident and walk Eternity Road looking for the entrance to a Heaven that will allow the dog to enter with him. This year I made it through most of  The Hunt before I sniffled a little and I didn't even bother with  Kick the Can. I suppose like everything else familiarity breeds contempt, or in my case numbness. Honestly, I was trying all day to come to terms with the fact that my life has become pretty much a predictable decline since becoming sick fourteen years ago. So much has changed but my illness has not. I now have a name for one of my "dark passengers" (Dexter folks will get it) , Hyperadrenergic Postural Orthostatic Tachycardia or HPots. I also battle Chronic Fatigue/Firbromyalgia.  I thank God for the strength to still work at this point. I've never been one to throw in the towel without a helluva fight.
One thing about so much alone time is the tendency to dig up bones....you remember the Randy Travis song- "exhuming things that's better left alone, I'm resurrecting memories of a love that's dead and gone".. I did some digging of my own and found out that someone I once loved very much had passed away in December 2012  at the age of 63 to Alzheimers. Even though I had not seen or spoken to him for almost thirty years, the impact he had on my life cannot be denied and reading his obituary sent me into a place I haven't been for many years and I felt that "old familiar pain".  He taught me so many things, both good and painful. I was 22 and very impressionable and I thought he was the most worldly man I had ever met.  In my innocence, I  believed if someone said they loved you they did. All I knew for sure was I loved him and I made a huge sacrifice for the short lived love affair.  It crumbled like so many dry leaves in my hand and blew away on  New Years Eve 1980, leaving me alone, ashamed  and devastated. But out of the ashes of  this relationship I began a path for my life I would have never traveled with the National Park Service had  I not met him. I now have lifelong friendships and many wonderful memories due to our chance encounter on a snowy day in March.  It saddens me to think that a disease that steals your memories, may have taken all of his. 


                                                   RIP W.J.C

                 This is for you my old friend.... You forever changed my life.

   

Greetings from Mount Crumpett

Long time no see.  It seems like there is more time passing between my blog entries these days. Maybe it's the short days and the long evening shadows of early winter that have me moving and responding at a snails pace. It seems like so many people are sick or have illness in their families.Maybe it's always been this bad, but I don't think so. Perhaps it's my age making me aware of the ever ticking clock... When I go to the local store or out and about in our town, it seems like almost everyone, even the children,  have a visible mask of some type of duress on their faces. Maybe I just need to move to greener pasture. I know that most people think that living next door to the Great Smoky Mountains National Park would be a dream. At one time it was. Now a lot of us generational natives think it is more of a nightmare. It's very stressful living in an area that is not designed by nature to have 14 Million visitors a year. If you have ever been to Gatlinburg or Pigeon Forge on a weekend in October or when, God forbid, it is a Rod Run event, you understand the challenge of living here on a daily basis. Yin and Yang I suppose. Sometimes I wonder what it would be like to live in a warm tropical environment or even somewhere that maintained a mild climate without severe season changes. This area is especially hard on us folks with Fibromyalgia. The barometric pressure is up and down like a roller coaster and the Smokies have a mind of their own when it comes to weather, it can be 60 degrees one evening and snow on the ground the next morning.  But I digress...as usual.  The holiday season has begun full force in our area. Actually it started the first week of November with the kick off of Smoky Mountain Winterfest or Festival of Lights, not sure what they are calling it these days, throughout our county. Millions of lights and decorations galore with each town trying to out do the other. I fear we have become Whoville...

                    

 so I guess that makes me the Grinch...

I love this scene. I think most of us with chronic illness can relate to admitting to more than a few evenings where our day planners might sound somewhat like this. Thank God for a good sense of humor. I cannot imagine leaving home without it.
The Holidays are so hard to deal with but I did find a helpful  guide to dealing with the stress of the Holidays when you have Fibromyalgia and Chronic Fatigue. -chronicfatigue.about.com  Just go to the bottom of the page and there is a Holiday Survival Guide link.
I feel so bad for women who have small children and are also dealing with this condition. I guess my only ray of sunshine with this mess is that it did not hit me until I turned 40 and my daughter and step-daughter were both out of high school and in college. So I was not sick when they were little. I cannot imagine how you guys do it... you are my heroes.  One thing I have learned and I think regardless of your age or where you are in your parenting is that you must learn to say "no" without guilt and without explanation if necessary. Everyone is pulled in so many directions and we only have so much to give.  This Christmas my daughter and son-in-law will be here prepping for a move to Colorado at the end of the month.  This in its self will add a little stress but they know my limitations and they are not offended when at 6pm I announce it is my bedtime, or take a two hour nap in the afternoon.
My decorations are minimal and somewhat tacky. I found a teal green table top aluminum tree at Big Lots. Love it. Teal green lights and matching little ornaments. It works for me. No outdoor anything... we already have enough LED's to land the mother ship in our little town.
You sure can't compete with that. I think many folks in our area simply don't even make the effort with exterior lighting any longer. It just seems dim by comparison I suppose. 

Where did Fall go?

  I can't believe that it has been over a month since I have been on my blog site! I had great intentions of lots of pictures of the beautiful fall colors in the Smokies and of course musings and memories about my favorite holiday Halloween. But sometime between the kaleidoscope of colors and the mini candy bars I missed the whole month. I must say that my work has kept me busy and stressed the past couple of months. In August I finally had a full crew of dispatchers completely trained and all was sweet...experience has taught me that this situation is usually short lived. I know when the winds of change are coming. Somewhere faintly I hear it, I tell myself no that was your imagination and then the chords get a little louder :

I have tried to outrun them as I see them approaching with that look on their face. Sometimes it's the look on the others face's as I see the sealed official envelope with the inevitable resignation letter in my inbox. Being a 911 Operator is a tough job folks. Many people choose to move on after a few years due to the stress and the nationwide low pay scale for a very under appreciated job. They move on to positions that are kinder to their soul, sleep schedule and family life. I certainly understand, but I sure hate to see the good ones go. I have filled and trained three positions since mid August. So needless to say my staff has seen a lot of overtime and we have had to scramble to cover shifts during the high call volume month of October. So I suppose that I really haven't had any spoons left to do much but crash and burn every night when I get home. I have started a new supplement combination that  I read about on a site I follow on Facebook, ProHealth.  It is a site dedicated to Fibromyalgia and Chronic Fatigue (ME).  I find it has some excellent information and advice/opinions. I have been taking a combination of CoQ10 and D-Ribose. Both suppose to increase energy production at the cellular level. The information was for Chronic Fatigue treatment you must combine them to get the full impact.  I have been on it about 2-3 weeks and I'm not sure I feel any different. I plan to keep it up for an extended period due to the fact I cant imagine anything that can turn this condition around quickly. Obviously if you have suffered for decades with a problem, it is going to take some time to repair and heal your exhausted body. So if nothing else I am patient.
I have once again been on a eat-a-thon of epic proportions (kinda like my ass).  Stress at work and food increase= oh my gosh I cant zip my pants...
Who can resist all that darn Halloween candy? On that note, I heard someone say that it should be against the law to sell candy corn and candy canes at the same time. Can you believe Christmas marketing started before Halloween. Have they no shame?!!   With a little help from my friend(Lisa) and family(Courtney and Beau) I did have some killer outdoor Halloween decorations. I actually had around 8-10 Trick Or Treaters this year.  Here are some photos that I meant to post earlier....

One of the feral kitties visiting the Haunted Cemetery

The Mourner

Haunted Cemetery with Mourning Bench and ghosts

Skidder Kitty decided to pose on the crypt..my cats scare me sometime.

close up of ghost faces...scary! made from milk jug,dollar store mask  with lights inside

 

  and my favorite photograph of all, my dancing witches around a "fire". The witches are white trash (LOL) bags shredded with heads made of Styrofoam balls and the fire is orange lights wrapped in a grey cheese cloth material.

Full Hunters Moon rising over the ridge behind my house.

Too Many Apples, Not Enough SPOONies

How many apples can one tree produce! I'm in apple overload and it has finally kicked my butt. We who suffer with chronic illnesses that suck your life forces like Dracula on crack, such as Fibromyalgia and POTS, are very familiar with the Spoon Theory.  Each day when you wake, you know you have X amounts of spoons of energy before the inevitable crash and burn. Each day is different, especially if that day is a recoup day from over exertion the day or so before. 

 

 On a "normal" day for me, I usually have about 15 spoons on a good day. After the simple act of rising, feeding animals, making coffee and putting on the war paint, I lose 2. The thirty minute commute to work takes 2. If a shit storm is waiting on me when I get there, bye bye to at least 6 more in an instant due to stress. If things are as I like to call it "relatively calm" I use about 4 through out the day. 3 or 4 for the thirty minute commute home(driving get more difficult as the day progresses), 2 more to feed circling animals, 2 more to shower( I am physically unable to shower in the a.m. it exhausts me) then BAM, down for the day. SLEEP AND REPEAT.  So as you can see the Spoonie life is one of priorities. I must reserve the sacred spoons for daily functions, not social or extra curricular activity.

Yes, this sucks. My weekends are for recoup and light housework spread out over two days. Occasionally I feel like doing something outside, but not often. But back to my adventures in apple canning/drying. I have continued to cook and can a dozen or so jelly jar size each weekend. I feel compelled to carry on . Why I cannot just let the remaining apples rot is one for a shrinks couch I suppose or even better and in my price range:

As I sit here totally exhausted , through the window I see apples hanging in the tree and a voice says "must save more apples".  Then my body screams you are killing me..knock it off.  So today I have refrained from the process and just laid like a slug in my recliner. I had to take two vacation days last week to get over my marathon canning of last weekend.  My blood pressure and tachycardia have been on a flare up for about two weeks.  This condition is so hard for me to accept.... I want my life back but so does the multitude who suffer from various illnesses that wipe you out completely and change your very essence of who you once were.  I am thankful that in my young life I did many things and was healthy. I feel so bad when I read blogs and see stories of young people who are bedridden with the "invisible illnesses"....by the way , I really don't like that title. If  I am lying in my bed or I am wheelchair bound and the reason is not physically obvious to the curious, then it is only invisible to those people. I assure you we see and feel  our sickness everyday of our life. Better not rant, not good for the BP. Back to the dilemma of too many apples, not enough spoons.  I have another dozen jelly jars and the use of a friends dehydrator. If I have the Spoons this coming weekend I will wrap it up. I think it is the fact the apples are so big and delish this year that has brought me to this sense of guilt for letting them just ruin. One particular apple was so beautiful I had to take a photo:

 

This reminds of a couple other women from history obsessed with the apple:

So, in closing I ask this burning question- If I went through all my Spoons for an Apple, what would I do for a Klondike Bar?

The Old Apple Tree

When I was a little girl we had a wonderful apple tree in the front of our small house. We didn't have much more.. it wasn't until I was in high school that I realized how poor we really were.  My first memories of my childhood home are scattered. Somethings are so clear they are like I could reach out and physically embrace them. The apple tree is one of those memories. I spent many an hour climbing and eating the delicious small red fruit. I recall the inside was snowy white and they were both sweet and tart.

I had a special limb that when I reached its perch, I was pretty well a little chameleon. I would spend hours hidden, observing my dad, sister and sometimes my cousin Pat. When Pat visited I was pretty much black balled due to the fact I was an annoying little cuss that loved to run to my dad and tell on my sister and cousin for their many indiscretion's, mainly sneaking off to smoke. Even though I knew the inevitable "milking of my rat" would occur as soon as Pearl returned to the field to work the tobacco, I told on them anyway. Now , if you are unfamiliar with rat milking, it is when a ticked off  usually older sibling bends your little finger down and presses it painfully into your palm until you scream in pain. Then if I continued to spy and  sing like a bird the next torture was to smother me to the point of blacking out. I learned pretty quick to just go limp and roll my eyes and they would panic and promise me a trip down the long dusty road to the little store for penny candy if I promised not to tell Mom when she got home. Sometimes Pat would bribe me with what she called "Apple Fluff"- a frothy delicious concoction she made with sugar, apples from the special tree, vanilla and egg whites beat to heavenly consistency that was meringue like in texture. We would eat it by the spoonfuls and sometimes on white bread toasted in the oven for a few minutes.  We had found heaven on earth for at least a few sweet minutes.
When I was grown I lived at the old home place a few years with my daughter when she was about five. The house had been remodeled and a bathroom added (yep I have made the long walk to an outhouse many a time). The apple tree was still there but years of neglect had taken its toll. My daughter was able to eat some of the bounty but I dared not to let her climb too far into its fragile limbs. Due to circumstances beyond my control we were forced to move from the old home place and it fell into decay. Someday I might write more about that story but not today.
When I moved into the property I currently live in, I was thrilled to find an old apple tree in the front yard. It is an old fashioned Milam.  I was told the past owners brought it with them from their old home place when they were forced to sell to the government for the Great Smoky Mountains National Park. So many people were displaced and scattered to the wind when they were forced to relocate.  It was a devastating time for the people who occupied the area that is now the National Park. Most were paid a small pittance and moved with a heavy heart to the areas surrounding the now established Park boundaries.The Great Smoky Mountains National Park is the only Park in America that was established through the forced removal of the original property owners. This left many people bitter. As the years passed the wisdom of the Parks creation has proved to be the saving grace for the treasured Smokies range. I shudder to think what our area would look like now if the Park had not been established.  But back to topic, apples. My Grandfather Rayfield had an apple orchard in the area of the Park that is called Greenbrier. Most of my moms family came from that particular area. I have many relatives in the small cemeteries scattered through the long forgotten communities.
Anyway, the tree that is currently in front of my house was almost dead when I moved in twenty two years ago. It  had a few small apples and I really thought it was a goner. The following winter I placed my bird feeders in the tree and around the base on shepherds hooks. The next spring the tree was full of blossoms and an amazing harvest of apples soon appeared. Nothing like a little help from bird poop to snap a tree back to life! So I have left the feeding stations at that location and God bless her she is still thriving to spite a huge hollow area in her trunk and being riddled with wood pecker holes. For some reason, maybe all the heavy rain, the tree is so full of apples that limbs are breaking and falling to the ground.

Old Fashioned Milam Apple Tree in my front yard

So for the past three weekends I have been canning apple butter. This is a new venture for me but I have discovered some wonderful crock pot recipes on Pinterest. Due to my very low energy and inability to stand too long due to the POTS, this is the only way to can for me. I borrowed an apple peeler/corer from my friend Lisa and I can sit in my recliner and peel away. I have it down to a science now- peel and fill two crock pots around 8pm. I have been experimenting with different recipes. I have some made with Splenda and a small amount of brown sugar. I add cinnamon powder, a pinch of salt, cinnamon red hot candies, butter, apple pie spice and then let it simmer overnight. So when my energy is at its highest, which is early morning til around noon for me, I get the jars ready and then add some vanilla to my mix and use a hand blender to smooth. I can do all this on my trusty stool at my kitchen counter. My house smells wonderful for days! I usually am completely through by around 9a.m. and sitting back with my coffee while I hear that satisfying sound of pop.pop.pop as the jars seal.  I feel compelled to make as much apple butter  as possible and I hope to dry some of the fruit  in a dehydrator. I have a strong sense that this may be the trees last hurrah... she is barely standing the trunk area is so compromised. Every time we have a strong mountain wind I hold my breath and pray she doesn't fall.  This will make me very sad. Yet one more loss of old memories and the old ways. It is amazing that a tree that was once in the area of the National Park is still producing fruit. It was moved to this location around 1946. There is something about an old apple tree that always makes me kinda blue... maybe it is the knowing that the impending winter is just around the corner. Nature giving us one more treat of fresh fruit before Jack Frost nips at our nose.  Fall is such a bipolar season. On one hand you have the most spectacular beauty of the trees changing through their  palette of colors, blue skies and crisp cool days.Then suddenly one morning you wake to the barren landscape as the last bits of color wave goodbye.  But something about those calico days make many of us mountain folks melancholy. It is those days of colorful beauty that  I miss my loved ones and family that have passed the most. I have often wondered why I and others feel that way. Maybe our senses are more in-tuned to the realm of the unseen during this beginning of  Mother Natures long slumber.  It is almost like on those precious golden Autumn days their spirits are nearer to us than any other time of the year. Perhaps it is because this is the closest to heaven we can get here on earth.