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Thursday, May 30, 2013

Bet You Can't Eat Just One

Yep...that about says it all. I have been on an eat-a-thon of epic proportions. I feel like one of those weird creatures from Stephen Kings book "The Langoliers", nothing has escaped my ravenous hunger for about a week.  I continue to drag my exhausted body to work everyday and pray for strength to make it home.  I have so much going on that I cant even think about taking a few days off to try to rest and recharge. Unfortunately, I seem to turn to my old deadly friends carbs and sugars to give me a temporary boost to get me through the day. Today I found myself in a situation of being in a sitting position at our off site building that is under construction. I was alone and went to check the progress, I felt a POTSY moment and sit down on a milk crate for a few minutes. Then much to my distress, I couldn't get legs were not strong enough to lift the load. After a few minutes of thrashing around  like Ralphies little brother in the snowsuit (A Christmas Story reference, I use them often) I finally manged to get up. Damn. Not only has my hair turned silver, now I'm going to have to get a "Ive fallen and I cant get up" necklace. It's days like these that I change my mind and say to hell with the side effects of surgery, I'm having the gastric sleeve....I refuse to buy another pair of even fatter pants. I eat when I feel stressed, lonely, sad, bored,angry, depressed, etc... so basically every emotion elicits the addiction for me to satiate my self with carbs and sugars.  I'm angry at myself for having so little control in that area of my life when in other area's I am a complete control freak.  I was, in my old life,  the one that would take care of everyone's problems... I made them go away. I was a one woman more. Even though I still gravitate toward a feeble attempt at my self appointed role of General Manager of the Universe, I simply don't have it in me any longer. Some folks In my life think that I have becoming too apathetic...and maybe I am to a certain degree. I just don't have the energy to feel much these days.  But  tomorrow is another day, so I will try to start the withdrawal process of sugar that usually takes me a couple to three days to complete.  For now I yearn for the comfort of the Granny Bed.

Friday, May 17, 2013

Living with Gary (my Lap Band): THE GOOD,THE BAD AND THE FUGLY.

In 2004 I had the Lap Band gastric procedure. If you're not familiar, it is a laproscopic surgery to aid in weight loss.A silicon band is placed around the top of your stomach, creating a smaller egg size pouch that is your "new" stomach. You control the amount of food and how fast it passes through to the bottom part of the stomach with a saline filled port. How could anything go wrong with this brilliant plan....
It was relatively new in the early 2000's, and I found a doctor in Chattanooga who performed the procedure. I was at my highest weight ever, extremely fatigued and depressed to no end. I would have taken any risk to lose the weight. The fibromyalgia made it impossible to exercise or perform physical activities. Now that I know that I also have hPOTS, the absolute inability to tolerate even a short walk down my driveway is now understandable. So after some research, I made the decision to go ahead with the Lap Band. It seemed like a magic bullet. My sister had the procedure one year before me and had experienced some minor issues ,but was losing weight slowly.   I did really well through the surgery and recovery. As usual, folks with fibro take a little longer to spring back from surgery. Within two weeks I had lost 20 pounds and was excited about the future. I was hoping and praying that with the loss of  my goal of 80 pounds, my fatigue would improve and maybe I would have  some energy. This phase is what I will call  THE GOOD: I lost weight the first two years steadily and by 2007 I had reached my goal weight, losing 80 pounds.   Now for THE BAD:  One day after eating, I (and everyone in the room) heard a weird sound, like a cat meowing coming from my stomach. Not only did it come from my stomach, I would be on the phone talking and the meowing sound would come out of my throat , similar to a burp. Yep, meowing. So when I realized that the sound was coming from the band, I began to read online forums about the Lap Band and sure enough, strange sounds and growling is common. Naturally, I named  my meowing Lap Band Gary.
I am a big fan of Sponge Bob and the inhabitants of Bikini Bottom, Gary is his pet snail that behaves and meows like a cat....and yes I did pass my psychological testing prior to having the surgery. Not sure I would pass it now... ANYHOO.... another BAD is a nasty little Lap Band condition called "sliming". When you over eat or God help you, and it happens all the time, get a piece of food stuck in your "blow hole", the tiny opening to the lower stomach, get ready to slime. Mucous builds up in the esophagus and mingles with saliva, which obviously have only one way to go-up and out. It is the nastiest vomiting and retching you will ever experience. I was lucky. I didn't over do it often.  I do not like to throw up, and it is painful and as you will read later, very dangerous with a Lap Band. I did get obstructions in the "blow hole" and would have to jump up and run to the bathroom and projectile vomit everywhere...lovely isn't it? But I was 80 pounds lighter, so who cared about odd feline utterances, slimy mucous vomit  and losing handfuls of your hair...but alas, it did get worse for me. In 2008 and in 2010, I had to have IV iron infusions I was so anemic. I still clung to the belief that it was all worth it. My hair was thinning terribly, my nails were splitting and brittle and my general health was terrible. My biggest disappointment was that I still had absolutely no energy. I was in a size 12 (Oh forgive me Abercrombie and Fitch) and had pretty well leveled off in my weight loss. I did everything they said to do as far as eating properly. Small meals, no carbonated soda or beverages, and lots of water. Actually, two bites of solid food and I was full. One thing they did not tell me...I saw this on Oprah on an episode about Gastric By-Pass. You cannot tolerate alcohol very well post surgery. I believe the rule of thumb is one drink = three drinks in your old life. I learned this the hard way, so begins the FUGLY stage..
I went out with a group of girls way too young for me to help celebrate one of the ladies birthday. Oh things started out perfectly as so often the tale goes. We had a  Limo and headed out to Knoxville to the Bone Fish Grill. We had begun the party in Gatlinburg and I had a couple drinks at the bar there AND some wine in the Limo. Now also take into consideration, I was newly separated from my ex and was really needing to blow off some steam. By the time we got to Knoxville, I was basically out... but the Limo driver would not let me stay in the vehicle for insurance reasons, which I completely understand. So began the FUGLY scene of me hugging a trashcan and barfing in front of the restaurant..those poor customers with a window seat!!
The gals I was with propped me up on a bench outside and left me while they ate. I don't blame them.. I was puking, snotting and crying. It was beyond FUGLY. How I didn't rip the band out with all the heaving was a miracle and how I didn't end up in the drunk tank is a greater miracle. God does take care of  fools and children ... suffice it to say it took days to recoup and I now have no desire or ability to drink any type of spirits.
 As time passed, I began to have really bad acid reflux and GERD.  In 2009 , I received a letter from the doctor who performed the surgery , that he was no longer seeing bariatric patients. That alarmed me to say the least. I found a local doctor who I really did not like or trust, but didn't  know what else to do.  In 2011, I started having some pain in the port area. I continued to have  food blockages and loss of nutrients.. I had started B-12 injections once a week in an attempt to try to alleviate the fatigue. Then in November 2011, in a less than brilliant move, I decided to climb under my house and winterize the crawlspace. I ran into some problems and ending up being in the cramped area, basically crawling on my stomach for about thirty minutes. I did some moving of blocks that didn't seem that heavy. I was OK (so I thought) when I climbed out, but could barely get out of bed the next day. I soon learned from a MRI that I had ruptured a disc in my sacral region. The doctor started me on high doses of steroids. I could not get into the surgeon until late January. My band said its final hurrah during this time. I think it had something to do with the steroid treatment. My reflux/GERD was so bad I got aspiration pneumonia. My new local Lap Band doc removed all the fill from Gary  in January 2012. The weight piled on quickly, but I was so thankful to be able to eat a solid meal, fresh fruit and other fiber filled vegetables that I didn't care. I ate with reckless abandon and I loved it...soon my gigantic ass would not fit into that last pair of fat pants I had kept for emergency use only. I reluctantly went back to the doc in October to have  Gary filled again and he told me it appeared it had "failed". What?  He said the old style bands had a life of maybe ten years and most were having to be replaced long before then. He suggested a removal and a new revised band or a Gastric Sleeve, he told me to check back in six months. That would have been this past April. I have continued to have severe stomach pain and some general sickness since then and lets add another 20 pounds since October.  Totally bummed, to say the least. I decided to go to another doctor for a second opinion this week. I'm certainly glad I did. My band had not failed, it has slipped out of place appears to be prolapsed or partially blocked. I will be saying farewell to Gary in August. Now I have to decide whether I want or can tolerate any other type of bariatric procedure. I really don't think I do...I don't think the risks are worth it to me. I thought the band was the answer but it wasn't. I personally know five other women who all have had lap band failure since my surgery, including my sister. Now with this  new hPOTS diagnosis, I just don't think I can chance any type of complication. The new doctor said the Gastric Sleeve(they basically cut 2/3 of your stomach out and leave you a small banana shaped stomach) would be a good option for me, but after reading about it, I'm skeptical and so discouraged. I'm about sick of the one, two punch...I need a break Lord.

Monday, May 13, 2013

Hello Night Terror My Old Friend

"Now I lay me down to sleep I pray the Lord my soul to keep"... ever since Metallica put a whole new spin on this somewhat disturbing  in its own right childhood prayer with ENTER SANDMAN I can't  help but to  think of the song  when I have what I call a "doozie" of a night terror.  It's a little after 1a.m,  and I find myself up and in the recliner seeking solace in a bowl of chocolate cheerios (give me a break for at least eating a little fiber) after a night terror of epic proportions.  I think I have talked about this before, I am a lucid dreamer. I could write pages on the dream scape of my life. Over the past few years I have been having sleep paralysis which is by the way, one of the most frightening , out of control experiences you will ever encounter.  Usually, I suddenly become semi-awake and i am aware that something is sitting on me or hovering just above me in my bed. I know where I am, but I cant wake up. I cant open my eyes or move at all. I am screaming in my mind to wake up damn it! I have always been able to eventually get my eyes open, but I still cant move.When I can focus it is usually over, or the part where i think something is there is over, but I cant move for another couple of minutes. This by the way do suck.... Tonight has taken me to a  whole new realm...before I get into it, I must say I have had some exceptional stressors the past few weeks with my health diagnosis and just the everyday battles we all face in our work and personal lives that leaves you tettering on the brink of sanity. I have often said that I wished a pharmaceutical company would develop a valium or xanax lick, you know, similar to a salt lick you put out for deer and cattle. How awesome to just have one on every corner at work and when that one coworker/client has you ready to go postal, just walk by and lick it like a lollipop...aaww.. problem solved. But back to tonight's featured presentation- I was very exhausted this evening and went to bed around 8:30p. I suspect the Sandman had me out cold by 9. This is what I remember: I was lying on my left side, covered in a sheet  on a hospital gurney in a room of grey darkness. I could not see or hear anything but I was aware of a doctor with me and a procedure was happening, i felt like it was maybe a birth or something of that nature. I asked " what are you doing?" because I felt as if something had been inflated in my skin or body.. He said "don't talk". And I didn't . I was rolled into a place of darkness that felt like it was in a big open glass enclosed room. Suddenly the most terrifying feeling of something approaching came across me, I was still on the gurney, covered with a sheet but i knew it was standing beside me in the darkness. This is when the muffled screams that would not leave my lungs were forming. But this time I was not paralyzed. My mind was screaming fight, swing do something... it's here. I then felt the sheet move and lift up.  I was able to swing my right arm up and back and I grabbed hold of what felt like a long boney finger or something. At that moment , my mind was still trying to get me to release the  scream, and boy howdy, did I.  I sat up in bed with a blood curdling scream, fighting and punching  the darkness. I was joined by the barking of two vicious 7 pound Toy Fox Terriers in their crate in my bedroom. I was wringing wet with sweat and pretty well beyond disturbed.  I looked at the clock and it was 12:25a.m.
This is very discouraging to me as I have had two sleep studies and I am currently on a Cpap . It has been one year since  I have had a dream of this magnitude. Needless to say it is going to be a long, bumpy night ..

Friday, May 10, 2013

Thank God It's Friday!!

I swear, every week at work when Friday rolls around I say the same thing to my friend David " I don't think I have ever been so glad to see Friday." But I really mean it this week.  I think this could be the worst fatigue and POTS symptoms yet.  I heard a saying once that  "some days are chicken salad and some are chicken shit" well this has been a week of  heaping chicken poop. I have been on my new meds (Aldomet and Inderal} three weeks today. Do I feel any better? As bad as it breaks my heart to say-no. I think my heart rate is being controlled somewhat better than with the Toprol, but my diastolic BP is rarely under 100, even when I am sitting. God only knows what it is after standing for a few minutes or walking down the hall at work.  I will give it some more time and then I suppose me and the local doc will try Plan B- different meds.  For anyone new to my blog, I have been battling some invisible disease since 1999. I finally got a Fibromyalgia diagnosis in 2000 and basically told to live with it. I think that is the standard of care for most folks with Fibro. Started POTS symptoms in 2001 and down hill like Lindsey Vonn since then, crashes included. My primary care got me into the Vanderbilt Autonomic Center for testing last month, God bless him. See my previous posts for all the adventures in Nashville and more detail of the testing. Anyway, the diagnosis by Dr. Italo Biaggioni, who by the way is excellent, is Hyperandrenergic POTS. If you don't know the sub types of POTS this particular one is usually inherited, comes on slow and gains momentum and is the most difficult to manage.  My body stays in a constant state of arousal (no, not the good kind) all the time. This answers so many questions and behaviors of my entire life. I have always been hyper vigilant, assertive and easily angered. Neck and facial flushing is also a symptom. Since my 20's if I got startled or angry my neck and chest would be completely covered in red blotchy spots. I always had to wear turtle necks or button up shirts to speak in public or go to any event that caused anxiety.  Some of this hyper vigilance  was a good thing being a police officer and at one time a National Park Service Ranger, I was always alert to danger and my surroundings. But my relations with those around me often suffered due to my over reaction to some issues and my mood swings. But our poor old bodies can only take the flood of adrenalin for so long till the inevitable happens. I do not have a doubt that my fibromyalgia was caused by the constant fight or flight response my body has been in for decades. I saw a cartoon once of a snake on a rock and it was stiff like a stick with a caption of "RELAX". I thought then, that is me..but I had no idea why I felt the constant anxiety and vigilance, even when i should be chilling and relaxing.
This week at work has been almost more than i could bear..being in a management position, I have a bit of freedom in the respect that if i cant sit up any more, I have an extra chair in my office for visitors that reclines and has a foot rest. So today I spent most of the afternoon laying in it, trying to read some work related manuals.  I know I have some big decisions in the future and I'm trying not to completely freak out. One day at a time.....
Reclining Executive Office Chair by Brookstone...heck yeah!!!
I did however go online and found a rolling office chair that reclines with a pop-up foot rest. Yay!! It is made by Brookstone and I have one ordered for my office for  when I cant take the upright position any longer, but need to stay at my desktop computer. If i go to my other chair, like today, I'm away from my work area.  I sure am hoping this will help me when I cant feel my feet after sitting for an hour.
By the way, Im getting ready to revamp the blog page and change the name since I finally have found the Wizard of Vanderbilt. So it may look a little different in a day or two.
photo of Lady Slippers in my Wildflower Garden

                                       Missing you this Mothers Day weekend
                         In memory of my Mother, Christine Parton Rickman

Thursday, May 2, 2013

Arise O' Sleeper

My sister tells me I am too open with my emotions on this blog. That is probably true. Writing is very cathartic to me and I have a lot of demons to exercise via the written word.
All Gods children have trouble. Even if you do not consider yourself a child of God , I'm sure you have had your very own tsunami that ripped your world apart. I have had several.  Too many.  Betrayal by those you loved and trusted the most ranks up there with the life changers. That one that makes you the person you never thought you would ever be. I absolutely hate the quote "whatever doesn't kill you makes you stronger" Really?  There may be some truth to that , let me assure you it may make you stronger but on the flip side most people will find it has also made them bitter, unable to trust again and cynical as hell. Self preservation baby... you don't want that to happen again. I went through a divorce that I thought I could not make it through - my husband of 25 years starts affair  with co-worker who is the age of our daughters. Add to that he is the chaplain for the fire department where he worked and her supervisor. Last but certainly not least, she and her husband lived next door. Nope , not kidding.  I fed her, became her friend and POW right in the kisser. Honestly, I was much more angry at him than her... I often said if I saw the two drowning and had one life preserver I would toss it to her. This is probably too much info, but suffice it to say after two miserable years of divorce proceedings, mediation, yada yada yada it was finally over. It was a struggle to rise from the mire of my own brokenheart and re-invent my life. I had so much anger. If you have been there you know the continuing banner that scrolls through your mind : how could he do this after all these years together? How could I have been (chose to be) so blind? Oh my God- I'm sick with a chronic illness and alone! How will I pay the bills and take care of everything?.... and on and on and on.  My biggest regret is the absolute feeling of having no closure. One day we were and the next we were not.... and we never discussed the situation or the end of the book. Boom went the dynamite one night and he was just gone. It was like he died but his ghost image was still here for me to see around town and since we both worked in emergency services, hear his voice over the radio.. a dead man talking. It has been seven years and I am to the point where it is just another day and they are just an afterthought.  I have bigger fish to fry with this new diagnosis of hPOTS. Now I would pull them both out of the stormy sea if they were drowning, so I guess that is a good sign of Gods healing power.

I tell you this because someone I love very much is in a very bad place. Crushed by the  betrayal of her husband of over 30 years and trying to get her footing after the monster wave overwhelmed her. I cannot help her. Her children and friends cannot help her. This is a valley you walk alone with the most High. It is treacherous,hard and rocky place. A place where you stumble often, but must get back up and find your footing. It is the proverbial one day at a time place. She is facing a mighty battle, but I know she can do it. Right now she is struggling to believe that "this too will pass" and I understand her thought process completely. There may be someone reading this right now that has just been floored with a truth that they are  struggling to accept about someone they love and trust. It's a horrible thing, but ladies (and gents) you will survive. I don't want to break into a Gloria Gaynor song, but you will because you must. Only someone who has walked the walk can tell you the truth about all the pain, loneliness and  second guessing yourself  you will do. Your mind is your worst enemy when you are in this place. Negative thoughts bombard you like a hail of bullets, determined to slaughter your peace and sanity . I found solace in the word of God , particularly the book of Psalms. I had a small book with several verses and when I was about to break bad and do something I would regret, I would read and meditate on the Word. I also ate a lot of ice cream.

It is hard to imagine when you are battling these giants that a better day will dawn. But you will come to a place when you look back and wonder how and why you endured what you did, for as long as you did . Most of us stay because the hardest thing in the world to do is to make a conscious decision to be alone. The very thought strikes fear in the heart of our core self. We are pack creations. We thrive in the company of others. I have accepted and embraced my alone lifestyle, maybe even a little too much. If you have fibro, chronic fatigue, hPOTS AND a full time job you pretty much have a relationship with your bed and recliner. I attempted the dating scene and honestly all I could think of was "damn, I wish I was home in my PJ's"  instead I was  pretending to be a proper lady and smiling and nodding at the old fart.  But I did get a good meal and a box of chocolates from my  Prince Charming who arrived  in his silver mini van with the side crashed in where he had fell asleep at the wheel. Swear to God, true story- you can't make this stuff up.
The only way I can make it in this world is humor...If you are in the dark place of betrayal,heartbreak and that old devil fear, I implore you to light a candle and curse the darkness!!  You are more than a conqueror sister.