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Saturday, April 27, 2013

Ghosts, Orbs and Farewell to Possum

RIP George Jones
I am sick of myself. I need to talk about something except all my medical woes...one can only read and worry so much about what ails you till you lose it and have the big meltdown. Frankly, I'm just too tired for that. So, that being said I think I will spin the wheel of randomness and just let my fingers do the typing. First of all , I am sad at the news of George Jones passing. Being a born and bred seventh generation Tennessee Hillbilly ( I can call myself that , but you call me that I will crack your lip) gal, I grew up with what I consider real country music.The artists of the 50's, 60's, 70's and early 80's to me are the essence of true country. It started to change with the crossover pop sound in the mid 80's...down hill like a snow ball to hell from that day on as far as I'm concerned. I haven't listened to a country station or watched a video since then. I catch a glimpse of the new country artists on TV occasionally.  I just can't get into it.... sign of old age I suppose.
I mentioned in an earlier post that my house has quite a bit of activity, if you will.  We bought the house in 1992 and it was abandoned and had been for a while. It was originally two houses that were in the area where the Great Smoky Mountains National Park was created. Hundreds of people, many my ancestors, were forcibly removed from their beloved homesteads by the Government. The Smokies is the the only park in America where residents were moved forcibly and their property basically stolen for a pittance. The two houses were then put together to make one residence in the 1940's just outside the park boundary, where I live now.  I think a lot more than wood and nails came on the journey from the park. Since day one, we have had unexplained phenomena, smells, sounds, etc... I actually have some photos from the first day we looked at the property and about 10 years ago I pulled them out of a drawer and was just looking at how much work we had done to get it livable when i first noticed the images. Faces in windows, one image of a woman hovering near the ceiling in the now living room that was a bedroom at that time. On the back porch is an old woman and there are two shots and she is in two different location on the porch.  One consistent theme is the prankster or "hide and seek" ghost... this is still happening. Usually once or twice a year. You will know you left an item a certain place, you turn the place upside down and it is absolutely not there. Now i know you are thinking, OMG she is senile... but it is not just me. My daughter has experienced this specific phenom on multiple occasions. But anyway, you will look and look to no avail.  Normally, I say "OK very funny, i need my____" and the next time I look there it is. Another is the smoking ghost. No one in my household smokes and every now and then, the odor of cigarette smoke is so strong it is unreal. My mother lived behind me in another residence on our property in the mid 90's and one day I mentioned the smoking ghost. She had this look of  amazement and relief on her face and said "oh my, I have been worried to death that I was crazy, I keep smelling cigarettes in the house, but I was afraid to mention it." So he or she apparently moves around on the property.  Once in the early 90's when we first moved here, my daughter was in high school and her boyfriend was over and they were in her bedroom. She went to the bathroom and while she was out of the room, he saw a little girl standing at the foot of the bed. She is in one of the pictures with her image in the window of  the same bedroom.  It scared him terribly. I have seen her one other time upstairs. I woke one night and she was standing by the bed looking out the window toward the field and woods. It didn't scare me. I just watched and the image faded. My animals have reacted in different ways. I had a Boston Terrier that would sit with her face about an inch from the wall behind the recliner. She would stare intently straight ahead into the wall and then slowly raise her head until she was looking straight up at the ceiling. She would sit there for about 5-10 minutes, then just come and get in my lap. I also had a Pomeranian that was very bothered by the original tenants. He was upstairs one day when I heard him yelp in a painful way and heard him heading for the stairs. He was running so fast he basically fell to the bottom landing and never to the end of his 12 years went upstairs again. All encounters have not been pleasant or benign. My sister had a dream about the house before we bought it and she warned me not to make the purchase but we did... she won't spend the night in the house. The first time she was visiting when we moved in, something unseen flew by her ear. She screamed and swatted at her ear. She said it sounded and felt like a bird swooped by her head. I was sitting there but didn't see or hear anything... too many occurrences to count.   Behind my house is a very special hollow with its own secrets and personalities.... everyone who visits that is sensitive to such things has some type of emotion or encounter. My Friend Lisa and I set her wildlife cameras usually ever summer and fall to capture photographs of the animals that come down to the pond to drink at night. I'm still hoping for the ever elusive panther photograph. One thing we do capture on occasion is Orbs.. now bear in mind that the camera is set up to take one  picture and then within a minute automatically takes a second shot. So it is interesting that usually in the second photo, the orbs are no longer there. Some folks have said "oh those are rain drops" Well, first of all it wasn't raining and secondly if it were rain drops or dew drops, wouldn't they be there 30 seconds later...just saying.    I'm going to try to attach a few pictures from the hollow below.  I know this is pure hogwash to many people , but I find the whole supernatural field intriguing and  I truly believe unseen spirits are amongst us. I now live alone with the previous home owners( that is another post all on its own ) and don't mind it at all.  Actually , I think they are as relieved as me to be free of the negative energy that prevailed until the big D.
An interesting spiral pattern of Orbs
photo one : streaking light above corner and above log
photo two : 30 seconds later  light splits into three orbs at top and one at bottom

Friday, April 26, 2013

I had to laugh when I read Maxine today. I can so relate. The last couple days have found me out of work on sick leave as I try to acclimate myself to the med change for my newly diagnosed Hyperadrenergic POTS.  I have stopped the Toprol and have started a combo of Aldomet (methyldopal) and Inderal (propranolol) very low doses. If you are Hyperadrenergic, you cannot tolerate normal doses of medicines (usually).  This was the recommended meds from the doctor at Vanderbilt Autonomic Dysfunction Center for me to start the treatment protocol. As Floyd, the cartoon dog says " we are exchanging hand gestures".  I feel like my butt has been kicked to the curb. The doctor told me that rarely do you find the right drugs for this problem on the first try. Everyone in a hyperadrengeric state reacts differently and it is very hard to find what will help you to manage this monster.  No standard of care has been discovered at this point. Hopefully in the future someone will have an Eureka moment and future patients will be healed or at least have a clear treatment protocol.  
For fourteen years I have tracked this faceless beast. It kept me going to know it was out there and if I could identify and name it, I just maybe could tame it. For over a week now I have done exhaustive research on the subject and the reality of the diagnosis is not promising, especially in my age group (54 years and 343 days) and i am in a "de-conditoned" state. I just love (not) that term.   I'm more than just a little disillusioned and depressed from the past few days. Anytime you have a change in meds that affect your BP and brain hormones you get a little crazy. But didn't my old friend Norman say " We all get a little crazy sometime". On that note, anyone else loving the Bates Motel as much as I am? Wow, what a show last Friday...anxious to see this week. A little trivia on the cast:  The woman who plays Norma, Vera Farmga, has a little sister, Taissa, who played Violet on the first season of American Horror Story - Murder House. I live in my own special house with quite a history of activity since I bought it 22 years ago . Sometime in the future I will tell some ghost stories.  I'm a big American Horror Story fan. Can't wait until this new season, it suppose to be about witches and Kathy Bates is joining the cast. It is set in New Orleans.
 

Sunday, April 21, 2013

Free Falling

It has taken me since Thursday to recoup ( my version of recouping) from my visit to the Vanderbilt Autonomic Dysfunction Center where I was diagnosed (finally, it only took 14 years) with Hyperadrenergic Postural Orthostatic Syndrome. Say that three times fast......  Couple that with Fibromayalgia, which many people do, and you have quite a nasty mess.  Apparently, the hPOts is quite difficult to manage. You have hyperstension when standing instead of the usual hypotension that is usually seen in POTS.  Your heart still tacs out  but your BP, especially the bottom reading, shoots very high as well. I saw Dr. Italo Biaggioni at Vanderbilt. He was awesome, even if my experience with the inept clinic staff was less than satisfactory. I emailed him  all my concerns, mainly that  I would NEVER get my results in a timely manner and within one hour he had emailed me back a complete test result sheet and a copy of the management plan for my primary care physician. That is unheard of...  But back to the issue: since I have been managing this nightmare for over  a decade with salt, water and Toprol, he made a few medication changes. He believes the Toprol is possibly contributing to my fatigue. I only take a tiny dose each day, but as with most  hPOTS sufferers, I'm super sensitive to drug dosages and a little goes a long way. I am changing to old school Inderal, very small doses and stopping the Toprol all together. He is adding Aldomet, low dose again, at bedtime. Then when I am acclimated to the new meds, he wants me to try  low dose, not more than 25mg a day, of Savella again. It does increase your heart rate, so i have to really watch the side effects. I told him I felt better on Savella low dose than I had felt in years, so he wants me to add it to the treatment plan .  Also an abdominal band was discussed instead of pressure support hose.I found many to choose from on the internet via google search.  He stated the hose were so hard to manage and put on daily that they were now recommending the abdominal band to most people. He said that  most of the blood pooling was in the abdomen area in many patients. Since I am so de-conditioned (yeah, what every girl wants to hear) a very slowly progressive exercise plan was needed. He recommended mainly resistance bands, recumbent bike and swimming. Start very slow, just five minutes or so every other day until you slowly build up your strength.  He said absolutely no aerobic exercise at this point( if ever) and nothing that involved standing, like a treadmill or even slow , short walks.  He said it is imperative if you have POTS that you build leg and abdomen muscle...slowly in my case. I have a recumbent bike, so that is a plus. I will just have to try to find it under all the clothes .......
The past few days have been a roller coaster of emotions ...I knew I had something very wrong and there is great relief in finally getting a diagnosis. But on the other hand, this confirms my worst fear for the future. I know many people with hPOTS become disabled. Being a single person and the bread winner , this is horrifying to me. I'm a pretty strong woman and can bend in the face of most storms, but selling my beloved  home and downsizing to an apartment was never in my plans. I fought like hell to keep it when my ex ran away with the spoon and succeeded.  Ironically, I have said many times one of my favorite quotes is "Man plans, God smiles".   ouch............... I suppose there is a lesson in this somewhere.

Wednesday, April 17, 2013

Country Roads...Take Me Home

I can safely say this is me for the next FEW DAYS.....
I don't even know where to begin... I was told at 8am this morning to be back for testing at 3pm at the Vanderbilt Autonomic Dysfunction Center due to their error in scheduling.  I checked in at the Kiosk at 2:45  and waited patiently...and waited ....and  waited.  Finally at 4:30 I went in search of a human. At this point my day went into ludicrous mode.... no one knew why I hadn't been called back or the location of  any of my paperwork . Another hour passed as I lay in my chair with my feet up to keep from passing out in the lobby. I hadn't taken my Toprol for 24 hours and I was a hurtin' big time. My sister was just about to rip someone a new one (she is a 30+ year veteran ER nurse) when a young man came to take me back for the test. I must say by this time I was close to just trying to leave and get back to the hotel and my bed. Out of my entire experience at the Vanderbilt Autonomic Center,  I must say this young gentleman brightened  the day. He was so nice and apologetic for all the hassles we had endured for two days. The paper the hateful Beeatchh from the day before gave me was not even the correct testing that had been ordered by the doc in the computer. Hells bells. No wonder people give up and die. I finally started testing around 5:30. This young man  stayed over to make sure I got the test completed today. I had a series of three tests and two of them showed positive for POTS or postural orthostatic tachycardia. They did a modified tilt test that only lasted about 15 minutes and it showed the rapid heart rate increase indicative of POTS.  I feared this would be the case. It explains my extreme fatigue that no amount of rest can restore. Interestingly, the doctor said Toprol was a terrible drug to cause fatigue in many people. Finally around 7pm we boarded the shuttle back to the hotel but first we had to take another guest downtown so at least we got a glimpse of  old NashVegas. We were both so tired and addled we did indeed look like zombies. We ate some chicken from a dive next door and crashed. Tomorrow I head home, more than a little disappointed at the Vanderbilt Autonomic Center. If you read this and you are planning a trip to the center in the future, please don't get your hopes up. I hope and pray you have a better experience than I did.  The doctor stayed maybe 30 minutes in the room with me and I will not see him again. They forward the results and a treatment plan to your doctor. I swear you are your own best physician...research and try to find what might help. At least the doctor gave me some information on drugs that might be better than Toprol for me to give to my primary care physician.
I knew I would test positive..it was the obvious cause of many of my daily struggles according to most of the research I did. But I needed to get it documented so when the day comes that I simply can't do it anymore, I might have a chance with disability.  So I leave Nashville tomorrow and not a moment too soon .... I miss my inner sanctum and my memory foam bed. Hopefully, they will forward all the test results and the treatment plan in the next few days, but if the last two days are any indication of their follow-up ability, I'm sure I have a battle ahead to get the information to my doctor.

If I only Had a Brain

Lord, I'm trying not to flip out. After rising at 7, fasting (no coffee is hell for me) and boarding the shuttle for the  journey to the  Vanderbilt Autonomic Center , I find them waiting to tell me they made a mistake in scheduling and they need me to return at 3pm.  Then the words that broke the camels back rolled across her tongue. "We didn't know how to get in touch with you".   SLOWLY I TURN... you have to be freaking  kidding me. I only filled out volumes of paper work to visit this Holy Institution of Healing with all my contact numbers, including cell phone, on at least three different intake sheets. This really concerns me. If they cant problem solve an issue such as this to look for your cell phone number , how the heck can I trust them to administer any serious testing?  Yesterday, I was less than impressed with the nursing staff. She forgot to get my o2 stats during the initial test and as she said "winged" it with a number my on chart. Bit my tongue on that one... they thought I already had my tests and were looking for the results, including the Doctor.    NO, NO NO! This is my first visit...omg look at the papers in front of you. The doctor seems very knowledgeable on the subject,  but I fear his staff  is lacking. Actually I think he knows it, he rolled his eyes on more than one occasion when dealing with them or asking them to do something.  I heard them talking that almost all the staff were floaters from a service pool. I waited an hour for the doctor report and finally walked back to the unit and asked  the whereabouts of it and they had "forgot" sorry... the Admin women were pure bitches when I attempted to ask a question about the now defunct 8a test.  Great.  Folks, if you think Vanderbilt is any different than any other hospital, I fear it is the "Same circus, bigger tent".
After my initial mild to moderate raging episode, with full blown Kermit the Frog frailing arms... my sister wrangled me onto the elevator and we called for our shuttle to return. This was the bright spot of the morning.. Our shuttle driver is hilarious and knows how to play the Nashville tourists for those tips. He is a quite jolly fellow and I suspect he would be right at home with the Klumps at their dinner table. I thought he said his name was Oscar. Later in  the morning I realized it was Mr. Carter... I had called him Oscar all morning. LOL. How I got Oscar from that is beyond me. I shall continue to call him Oscar.  Anyway, when he seen me in full hissy mode after returning to the hospital he suggested breakfast (he knows what two fat women want when in distress) so he took us to the Pancake Pantry.  This is funny because the original Pancake Pantry is in Gatlinburg, my home town, and now I travel 300 miles and eat at the same restaurant I can eat at anytime at home. On the positive side it was delish as always. Now Oscar managed to work himself a big TO GO breakfast compliments of his fares  when he picked us up.  Marge says he will probably recommend Ruths Chris for dinner and hope for that to go container again. Anyhoo.... trying not to flip out but I haven't had any of my bp meds  for two days and my head is throbbing . I cant even imagine what my bp reading is at the moment. I also cant take my fibro meds or muscle relaxers until the test is over so my pain level is out the roof.   God only knows what they will do to me at 3p after my tongue lashing of them earlier . They will probably strap me on one of those round tables that spins and throw knives at me.

Tuesday, April 16, 2013

Are We There Yet?

Yesterday was a long and winding road... it started with my sister forgetting her purse at home and we had to go back , fortunately we weren't too far. Then we had to stop at Kroger for emergency low blood sugar road snacks...then we realized our blood sugar was already low so we stopped for lunch - so basically it took almost two hours to  get out of the county. We ate at Wendy's and I got a kids meal for the chicken nuggets.  I had a container that I thought was sliced apples but it was the toy , a part of the cranium.  Really, what kind of toy is that ? It made me mad and I'm in my second childhood.  I started to toss it when my sister said" don't throw that out I forgot the container for my partial". We had to have a good laugh on that one.  Anything to keep from going back to her house yet again. And so began our long day. I usually know exactly where I'm going before I get there due to my pro-planning personality. Yesterday I put all my paperwork and directions in my suitcase and didn't bother to have them up front with me. We managed to take the wrong exit, my bad on that one, and headed toward Memphis. I cant drive on busy interstates due to my vertigo and the fact I go about 50 ( that's still faster than you Lisa) so my sis drove the whole way.  Of course we didn't have a GPS so we were just all over the place..finally we spotted a sign for the Vanderbilt  Hospital area and got in our general vicinity. Still driving in circles and the stress of a road trip on two fibro/cfs sufferers is not a good combo. My sis suggested in a somewhat loud and high pitched voice that  I ( aka you damn idiot) check for the address on my phone. I do not have a smart phone, but I am a smart ass..so it began. But to our wonder it worked out great for us. I had just made some catty remark when she rolled her eyes heavenward looking out her window and there was our hotel beside of us, we flew into the parking lot through the exit lane, much to the dismay of several guests. I'm sure the valet was horrified, but I suppose he has seen worse. It is just terrible that a trip in a car for just a few hours can kick your butt so bad... we were both so exhausted that we couldn't go back out for dinner. Fortunately the hotel has a little Bistro and we ate in last night and this morning. We are getting ready to head to my initial appointment at 3p. The hotel has a shuttle to the physicians complex so that is helpful. I hope we have the energy to go somewhere for dinner, but I'm not counting on it. When this doctor sees us, he may give us a two for one deal.

Saturday, April 13, 2013

OFF TO SEE THE MAN BEHIND THE CURTAIN

Smile~ you know it's funny


Trying to rally up the strength to start packing for my trip to Vanderbilt on Monday. I will be going to the Autonomic Dysfunction Center for testing for postural orhtostatic tachycardia syndrome or POTS. After reading about this condition, I'm not sure which is worse..POTS or Fibromayalgia/CFS, or the horrible possibility of all of the above. One symptom of POTS is the crippling fatigue and since fatigue for me is worse than the pain, this is my last hope of a diagnosis.  I see the doctor on Tuesday and the testing will be the following couple of days. I have decided this is my final journey to any specialist or clinic. I'm tired and I'm through. If I leave Vanderbilt without a diagnosis, that's it.  I have been to every specialist I can think of and as most of you know and have experienced, you usually leave feeling like a helpless, bumbling idiot and humiliated by some eye-rolling, smart assed , condescending  prick or prickess Physician. Wow that was a mouthful.
 My sister is going with me so I guess we will try to enjoy a little of Nashville if we feel like it. She also has Fibromyalgia so it is very likely if we get out on the town there may be a report of two old  zombies near Tootsie's Orchid Lounge. We remind ourselves of  Tim Conway  from  The Carol Burnett Show as we shuffle along. Some of you will remember the character.  We must laugh or we will cry....
Hope we haven't missed Happy Hour!

Anyway, please remember us in your thoughts and prayers and hopefully I will get a little more education on POTS and how it manifests in folks diagnosed with Chronic Fatigue to share with everyone. Or I will have a major hissy fit and pull the cover over my head.
 Hopefully I will feel like blogging a little from Nashville. But as of this minute, I'm in the bed, oh what a shock, getting ready to watch all the episodes of Bates Motel. Tomorrow is another day, I shall pack then...maybe....

Sunday, April 7, 2013

Devil Inside

What a week.. so tired and exhausted that words can not suffice. Maybe its the stress of work deadlines, budget deadlines and just everyday wheeling and dealing. E911 is a busy place, one thing is for sure- if you work in emergency services of any type you will always have a job. Bummer big time on the Savella meds..I've had to stop them due to rapid heart rate and elevated BP. This is really discouraging to me because I felt better immediately upon taking it. Even on a very small dosage, my heart felt like it was pounding out of my chest. I want so bad to take it.... for the first time in 14 years I felt optimistic about a possible drug treatment. But once again that damn big boulder has rolled back down the hill, flattening my hope and we are back to square one. Next week I go to Vanderbilt University in Nashville to their Autonomic Dysfunction Center to be tested for POTS (postural orthostatic tachycardia syndrome). Yet another reason I chose to stop the Savella until I could get some information on whether this fatigue is a by product of POTS. If you have POTS, you sure don't want to take any meds that cause runs of tachycardia.   I have been reading a lot about chronic fatigue and its possible causes and POTS is a culprit to rule out. There are certain things associated with POTS that are unique: basically when you stand , your heart rate rapidly accelerates to a very high rate and your blood pressure usually drops resulting in syncope or fainting episodes. I can't stand for long without feeling like I'm getting ready to pass out.  There are several other conditions that are all in the same family and they usually cause extreme chronic fatigue. I have been hospitalized in the past  for tachycardia upon standing and the syncope so my primary care doc made arrangements to get me into the very distinguished Vanderbilt unit.  I thank God I have a wonderful primary care physician who understands and acknowledges Fibro/CFS and works diligently to try to help me.           I am just flesh and bone (why I still have to remind myself of that is an entire post in its self ) and  I have days the devil himself couldn't stand me and today is one. I'm having a minor mad at the world/depressed episode. I have done absolutely nothing but lay in the bed all weekend. It is finally beautiful outside and through the windows I see groups of people walking and riding bikes by the Little Pigeon  river. I live in the most wonderful community at the entrance to the Great Smoky Mountains National Park, and yet I might as well be in solitary confinement.  I want my old life back, even if only for a day or so..... I guess that zap of nor-epinephrine in the Savella made me a happier person for a few days and I dared to hope and dream of improvement ...it's hard to return to the rut of just going through the motions of living every day.                 But tomorrow is another day and there are so many people out there with problems and heartaches much bigger than mine....so God willing, I will head back to work tomorrow and gird my loins and take care of business and attempt an attitude of gratitude.