Thoughts, musings and sometimes ramblings in honor of my Granny Parton, who was bedridden most of her life. Ridiculed and dismissed, I believe she was a sufferer of POTS and Fibro. I have just been diagnosed with Hyperandrenergic POTS,secondary Fibromyalgia and Chronic Fatigue at Vanderbilt. This sub-type is genetic and usually passed mother to daughter. Dear Granny I say this for you: I TOLD YOU I WAS SICK! image source: Daniel Robbins. Follow me via your email address!
Thursday, February 28, 2013
"Maybe I'm just like my Mother..."
Day three of Chia seeds and do I dare say that I can feel a difference? I have cut my calorie intake by half. I have not had any hunger pangs and I have the feeling of fullness like I did when my Lap-band was functional. Why am I just NOW hearing about Chia seeds? As for the energy aspect of the seeds, I must add something is afoot. On my way to work this morning, in my normal "Jesus Lord, please let me make it through another day" stupor, from radio land came the sounds of the little man in Purple - Prince. Shocking my entire body, my arm reached and cranked up the volume to "When Doves Cry", as I sang along. I then noticed my body was kind of bobbing and weaving and talkin' trash.. I also became aware of the other drivers looking at me in horror at the stop light. I'm sure I saw one mouth" Oh Lord, that old woman's having a seizure"..but I didn't care. All I can say is that they should have been around for the next song : Gotye's "Somebody that I used to know"..they would have really been impressed or dialed 911.
Tuesday, February 26, 2013
Ch Ch Ch CHIA
Over the course of the past 14 years I have tried every fly by night energy enhancer, weight loss miracle and snake oil available to try to regain some strength. If you have Chronic Fatigue you will understand totally and I'm sure you have also purchased your fair share. When I first got sick in 1999 I weighed around 160. Being all of 5'4'', that is too heavy for a small frame. but manageable. I was never overweight as a child or young adult. I had a quite traumatic event in 1992 that was emotionally shattering and quite publicly humiliating. Looking back I saw the pounds start to accumulate after this situation. Hello emotional eating... When I became full blown CFS/ME and Fibro(FM) it was all over for my puny metabolism. I took my current job in 2001 and by 2004 i weiged 230 pounds. One common remark from all doctors and most acquaintances was "If you would lose that weight you wouldn't be so tired and would feel so much better". Seemed plausible. So in 2004 my insurance covered me to have the Lap-Band gastric procedure. If you are not familiar, basically through laproscopic surgery, a round ring is placed around the upper section of the stomach, forming an hour glass shape. You have a new smaller stomach that is about the size of an egg. The band actually can be adjusted via a port under the skin of the mid stomach area to allow more or less solid food to pass through to the bottom of the stomach. It is reversible and not as drastic a procedure as a full gastric by-pass. I did very well and lost weight quickly. I only needed one adjustment or fluid increase to get to a desired weight of around 150 for me. That put me in a size 12 and I was very happy with that. Now the bad news: If possible, i felt worse with more fatigue and body pain after the procedure than before. My hair fell out by the handfuls, I had to have IV iron infusions twice due to severe anemia. I also discovered that if you have an eating disorder or stress binge eat, you will continue to do the same with the band. On that note, may I say that vomiting becomes a way of life if you have the band. I named my band Gary. Strange guttural noises at the most inopportune times are also part of Lap-Band. Mine sounded like a cat meowing... so naturally I named it Gary after the snail from Bikini Bottom. If you don't watch Sponge Bob then bless your heart, you're clueless about now. Anyway, I felt absolutely no better approx. 80 pounds lighter. That was when I knew I had true Chronic Fatigue. Don't blame the fat,or the depression or lack of exercise... I'm freaking too tired to live. This type of fatigue does not improve with spring, or new relationships or a new job. It's life altering and your environment or the time of the year has little to do with it. I get so tired of hearing how I should just "get outside and do more". Folks listen to me please: It is only by the grace of God I can work a 40 hour week, I have to crash and recoup every minute I'm home! To add to the stress and disappointment of no improvement to my symptoms, I began to have horrible acid reflux in late 2011. I got aspiration pneumonia and was very ill. I certainly knew how dangerous untreated acid reflux is and a precursor to esophageal cancer. So in January of 2012 I got the bad news my band had "failed". My upper stomach was herniated into my spleen. So all fluid was removed and I pretty much can eat as much as I can hold..not a good thing for me. My doc told me the old style bands were having to be removed from most patients and I could have a newer procedure involving the removal of some of my stomach. I don't think so.. I have gained a tremendous amount of weight in one year which is so depressing. On the other hand I really missed fresh fruits and vegetables and good solid food that i could not eat with the Lap-Band. I'm a sugar junkie. That is my main issue. This leads me to my latest quest for energy and weight control: Chia Seeds..yep, just like the most valued of cheesy gift ideas. These are the edible variety from health or specialty stores. Do not buy a Chia Pet and eat the seeds..they are not sanitary and edible.The ones I bought are organic and cost around $13 for small bag. Every week I pick up a Woman's World magazine and this was one of their featured diets a week or so ago. The title caught my eye "Better than Lap-Band Surgery" ok, I'll bite... it works on the theory the seeds expand in the stomach and give the sensation of fullness.They also claim to be a natural energy enhancer. I have to say my food consumption today has dropped significantly, no hunger pangs all day. I drank a Slim Fast with a tbsp of seeds in it this morning. I suppose the next few days will tell the tale.. I will be a few pounds lighter or I will be sprouting a lovely green moss... on that note ,where's my razor?
Tuesday, February 19, 2013
Riders on the Storm
Ever once in a while, my reality is so hard to face that I just have to ride my horse. This last week or so has put me back in the saddle. This is no ordinary horse.. this is a horse of salvation, a horse of tears and sorrows. He gallops into my life when I feel that i am close to that delicate point of giving in and giving up. From some unseen dimension he travels and picks up his weary passenger just as I feel the earth engulfing me. I'm so tired... the past few days have been particular hard on me physically and emotionally. I think the grief of the loss of my dear Sheila hit me a few days ago. I tried to cope, really I did. But the horse knew...he would be needed soon. This chronic fatigue has my body and mind in bondage. Every day is the same... I battle to make it through the work day, pray to make the 30 minute commute home and then shower and down for the count. My job is very hard on me. I have great responsibility and stress that is difficult on a person of sound mind and body. But as so many Fibro/CFS victims, I have to work. I will be homeless if I give in... so in my mind I ride the horse...I am energetic and pain free to endure the journey. We travel familiar roads and the mountain trails of my BF (before fibro) life. We stop by the stream in Elkmont and listen to the music of the water and smell the forest once again. Sometimes we ride along distant strange seashores. The other night he took me in my dream scape up the winding mountain to LeConte in deep snow at nightfall...it was beautiful. So with that vision in my mind, I will try to sleep soon. For tomorrow, God willing, I once again rise to the challenge and so will many of you.
Thursday, February 14, 2013
Singles Awareness Day or as I call it Thursday...
Happy VD everyone.... How am I celebrating this most glorious of days? I'm on my heating pad, in flannel PJ's eating ice cream from the container. Once again watching the pilot episode of The Walking Dead in black and white on AMC, and you know what? It does not suck. One thing is for sure, if a half naked man with a bow and arrow approaches me on Valentines Day, or any day for that matter, it damn well better be Daryl Dixon... am I right ladies?
Wednesday, February 13, 2013
Yawn...is it spring yet?
What a week so far... Lots of stressful work deadlines on top of personal stress all piled on top of a big swirling episode of vertigo. If you suffer from vertigo on a regular basis, God bless you. I have a couple bouts a year and its terrible. This is day two of praying to get home, feed poopers (aka Merry and Pippen, Toy Fox Terriers)and crash, literally, into my bed before 6pm. The weather in the Smokies today is cold and rainy. I'm sure all my fellow fibro friends are feeling this in their bones/muscles as well. Snow showers tonight in the higher elevations. As usual, hump day has me beginning the countdown to the weekend. Oh lets not forget that most dreaded of holidays is tomorrow... I had to stop at Walgreens on the way home and the card isle was jam packed with clueless males picking the steely bones of the almost empty Hallmark stand like vultures. This reminds me of a funny story-one mother's day many moons ago, my daughter handed me my card in a less than enthusiastic manner and went about her business. She was in high school and was at that age of total self absorption. The card was very sentimental and touching... a Hallmark classic. The ending couple of sentences said " Now that I'm a Mother too I can appreciate even more the love and sacrifice..yada yada yada"...needless to say she had obviously swooped into a store and grabbed the first card she spotted without reading it. I ask her if she had anything she needed to share with me and handed her the card to read. We both had a great laugh This is one of my favorite cards ever.
Saturday, February 9, 2013
Is This a Hot Flash or Global Warming?
And so it begins... that dreaded "M" word -menopause. I really can't believe at 54, soon to be 55 I'm still buying items from the feminine hygiene isle.Every 28 days like clock work. My poor eggs surely must be deviled by now! Two years ago I had a procedure that should have stopped the flow forever due to Anemia. Didn't work..I imagine my ovaries holding tiny signs that say "hell no,we wont go!" For the past year or so I have been having some occasional wicked hot flashes at night. At least I'm assuming its a hot flash. But it is crazy warm in my Tennessee mountain home. Today was around 60 and I noticed the daffodils are budding . I really can't imagine being anymore off center than I already am with Menopause symptoms. My doctor keeps telling me to be thankful my body is still producing my own hormones but honestly, I'm ready for some synthetic or bio-identical. I am ready to enter my old crone stage. There are some who would argue I achieved that goal years ago...cackle cackle (visual aid: Witch Hazel with hair pins flying on Bugs Bunny). Today was one of those surprising days of steady low energy for a few hours. I got quite a bit of minor house chores done and of course watched the Walking Dead season two Marathon on AMC all day. So now I have insomnia and my mind is racing. But I hold on to the fact that tomorrow night is a new episode of the Walking Dead. I never in my wildest imagination thought I would be a zombie fan. On the other hand I suppose we Fibro sufferers can relate to their condition- slow,dull reflexes, poor motor skills and yes there are days I would like to bite someones head off.
Friday, February 8, 2013
14 years ago....
So glad to see the weekend come.. the events of this week have caught up with me emotionally and physically. It has been a mighty battle to get dressed and make it to work the past two days. Still trying to get used to the absence of Sheila...very difficult. My soul is sad. I suppose I should go back with a little history on my journey with Fibro and Fatigue. I'm sure it will differ very little from most other Fibro sufferers stories. I was a healthy active person until January of 1999 and 40 years of age when one day I woke to a strange soreness/pain on each side of my upper hip region. Soon the pain was migrating to other areas of my body. I got the true influenza in late February '99 and a relapse case two weeks later. I spent the entire month of March on the couch. My life as I knew it ended at that time. The fatigue hit me like a brick wall. Pain was secondary to the fatigue and in my case and still is. So began the process of going doctor to doctor and being treated like a moron and hysteric. Finally in late 2000 a rheumatologist gave me the diagnosis and the grim reality of "no cure or treatment ... just mange the symptoms". Fortunately, at that time I was married and was not working so I had some time to start to adjust to the life changing illness I was dealing with. I have read many opinions of why you get this. I fit all all the possibilities: viral infections(Epstein Barr high active titers on every blood test),some type of illness(viral) while visiting the Mid East in 1997, trauma (rollover MVA 1998), history of anxiety and depression. So, who knows? Really doesn't matter, does it? Anyway, tried all the meds, no reason to list them, you know the ones. No help, just swelled me up and made me more miserable. Neuronton did something to my thought processes that has never corrected itself. I took low doses of it for about 3 months and it made me someone I didn't know or like. I'd forget where I was and would have to pull my car to the side of the road and try to retrace my steps and thoughts on where I was going. Due to finances and a great job opportunity in 2001 I re-entered the work force in an administrative role and it almost took me down the first two years. I have learned to manage a full time job and this freaking chronic illness and continue to work at this point. But I have days(most days) that I don't know if I can keep doing it.. I am very fortunate to have the ability to sit the majority of the day and work at my own pace. If I had a job that I had to be physically productive or stand/walk eight hours I would have to stop working and try to file for disability. My marriage ended after 25 years and I'm the woman/man of the house now... so staying home is not an option unless I file for disability, sell my house and downsize to a little apartment. That does not work well for me due to my family of animals. Anyway, I digress. This life sucks, as you know if you are also in this growing sisterhood ( and some brothers)you do the best you can hour to hour and day to day. Your old life is dead and gone. But if you are like me you continue to attempt resuscitation occasionally. If you have that one good day, you inevitably over do it and then crash like a runaway train. I'm not telling anyone anything new... I have no words of wisdom or encouragement. I'm out of the denial and "oh this surely will end some day" phase and have accepted the condition. I have accepted my limitations. I say "no" a lot, or I did. No one asks me to do anything anymore, they know my answer already. I have been single for six years and do not date or have any interest in another relationship. I'm already in a toxic relationship with the most controlling, abusive and isolating partner a gal could have: Fibromyalgia and Chronic Fatigue. I wish i could get another divorce.....
Tuesday, February 5, 2013
Purple Haze Tuesday
I suppose all things considered I am doing very well. Almost four years ago I pleaded and begged God for more time with Sheila when she got her dire Cancer prognosis. The deal was if I could have her a little longer I would be gracious and accepting when the time came later. I had lost so much at that time I didnt think I would survive it. He agreed. I am struggling to keep my end of the bargain, as we humans have a tendency to do. But I have been dry eyed all day, putting away her bed, bowls and toys. I have ordered her a beautiful wooden urn with the Rainbow Bridge poem engraved on the front. I try not to look at her chair (she had her own recliner). She claimed the ex -spouse's chair when he ran off with our neighbor and his fellow employee firefighter after 25 years of marriage. Ain't love grand? More on that later, another casualty of a relationship when suffering from Fibro and Chronic Fatigue and a dose of fireman hose syndrome-it's hell on marriage stats. I'm so tired..I am fortunate to occasionally work from home. Today was one of those days. My eyes were so swollen I looked like I was having an allergic reaction. Tomorrow, God willing, I will return to work . A stressful event like this knocks us "F word" people on our tails for a few days. My bed is calling..and I shall answer.
Monday, February 4, 2013
Blue Monday
Sad day... I took my sweet girl Sheila, my 12 year old Boxer mix, to the vet today and returned alone. She had two seizures in the past few days and seemed unsteady on her feet.Her eyes had a haze and emptiness. She was a cancer survivor and after ruling out other possibilities, our vet said he believed it was a brain tumor. Not uncommon in Boxers. He actually said most Boxers he has treated get cancer if they live their full life span. I couldn't stand to see her suffer so I made the hard decision. This is not my first rodeo , I have had many wonderful pets. I think if you suffer from chronic pain, such as Fibromyalgia, it puts you in a position to make the hard choices. I never want to keep an animal alive that is obviously terminal and suffering. I think my own pain and misery opens me to the freedom of death. I sure will miss her..she has been by my side through so many heartbreaks. I cant talk about her anymore today.
Sunday, February 3, 2013
Super Bowl, Oh I dont think so..Walking Dead Marathon
It is days such as these that being single and a social cripple aren't so bad... No offense to football enthusiasts but thank you, no. I am however a complete Walking Dead Head. Currently, the full season one is showing on AMC. Couldn't sleep last night (imagine that with the F word) and worked a little on my blog page. Total newbie and hope to fine tune the look and templates when I feel like it. Today is a sad day for me as I watch my faithful canine child of 13 years suffer her second seizure in 4 days. No history , but a history of cancer diagnosis in 2009. They told me then she would be dead within months without chemo, which i refused. I put her on two cups of decaf green tea and high levels of fish oil every day of her life. We will go to the vet this week because we had a little incident with carbon monoxide two weeks ago and I have a feeling this might be related. Being a 911 worker, I recognized the symptoms in myself when I turned on gas logs that had not been used in two years in a power outage. Sheila, my sweetie started panting and circling and went to the door scratching to get out. She never has done that in 13 years. Suddenly, I felt weird and sudden onset headache...OMG CARBON MONOXIDE.. I rushed and turned off the gas, gathered my clan of dogs (3) and we sat outside in the falling snows of the Smokies deep breathing. Yes, I probably should have called and got some O2, but I caught it within minutes and opened all my doors to ventilate. Now my next deadly sin...since I had not used the logs in years, the battery in my carbon monoxide detector was dead. Yes, I know. I of all people should have known better...but I'm worried she may have residual damage. I feel so bad all the time I wouldn't know if I felt worse in anyway...so tired today and dreading the grind of my high stress job. I def got the Sunday evening back to work tomorrow blues.
Saturday, February 2, 2013
In the beginning...
Why I am I doing this... I'm so tired everyday that even taking on another task as simple as typing seems ridiculous, but I came across a quote from a blog via Pinterest by +Girl Interrupted that was so heart breaking and so mirrored my own life that it inspired me. I wondered the age of this person... she has wisdom of the ages and the voice of a poet. Why are so many people suffering from this life changing condition? Why are we treated as lunatics? Why do I eat so much Ice Cream? It's late for me, almost eight pm- my new normal bedtime for the past two years. If I get too fired up over my "life partner" I won't sleep. Fellow sufferers will understand... more later... I think I'm going to like this!
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