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Saturday, March 30, 2013

TOTO TOO?

My inner child has roused from her slumber. She has been having some breakthroughs the past few years to whisper some long forgotten secrets in my ear. I suppose when you squelch the magic and innocence of that original little true person you were too early, they go into a state of forced time-out, waiting on the long seasons of your teens and adulthood to pass while all the time watching in a defiant pout and trying to raise protests to deaf ears. I remember a specific event in my childhood while in a particularly vulnerable and angry state that I gathered all my toys from the home of my childhood that my dad occupied and threw them away...my heart was hard and broken and those best friends did not represent what I knew then as the truth. Farewell to my trusty stick horse, favorite worn baby doll and the few books I cherished. I was about twelve and I was grown and everything was changed forever by events out of my control. But before I digress too far and fall ass backwards into a depressive episode, the reason for this memory lane stroll is really quite funny. Since this is day three of my four day mini vacation, I felt like I had the energy to write a little, so me and Team Tucker( my three furbabies) took to the Granny Bed to watch some TV and blog. My plans were to tune in The Walking Dead marathon on AMC but instead I happened to find  The Wizard of Oz on Disney. How many times I have watched this movie is surely well into the hundreds, however it has been a few years since I have indulged.
Oh how I loved to see that pink bubble coming to save the day!
Dorothy had just landed in Oz and for some reason, maybe the fresh Ramps I have ate for a couple days now, has acted like a spring tonic and I felt a little frisky. Now you mountain people will understand the power of the Ramp, it is an extremely strong member of the  wild onion family that grows in the Appalachian mountains.When eaten raw, as I prefer, you stink to high heaven for a day or so.  Similar to garlic, but a little different. They are only available a few weeks and they are like gold in them thar' hills to us mountaineers. Anyway, for some unexpected reason I felt the strong urge to sing all the songs very loudly with all the Munchkins and their descendents... I particularly like singing with the Mayor and Coroner. I crooned with the Lullaby League and the Lollipop Guild. Now I must confess that I am akin to a very famous family of excellent singers from the hills of  East Tennessee, actually very close kin, and I too sing like a bird... a crow.  It is awful, caterwauling at its finest. If you are not familiar with the term caterwauling, the definition is pretty much "screeching like a cat in heat"..yep it was that bad. I have traumatized my dogs terribly, well all except Happy Pappy and he is deaf as a post...I have seen the look of  " Oh Lordy, Lordy" on Merry and Pips little faces a couple times in the past few years. Thank God pets love you unconditionally and can't call Mobile Crisis.
   Watching this movie every March as child is one of my treasured memories that I pray I can carry with me to the grave. My mom would make real fudge that night. Do you know what I mean by real fudge? Hershey's Cocoa Fudge made in a cast iron skillet that took about 45 minutes to cook. She would drop a little bit into cold water to see if it was ready. It was the longest hour or so of our life. She would let me and my sister scrape all the warm fudge out of the skillet with a spoon before she washed it. The first time I watched it, I was about five or six . I was so upset over Toto being in the scary woman's bicycle basket that I burst into tears and began to wail and say a few choice words about Almira Gulch. My father worked in profanity just as Ralphies dad did in A Christmas Story.  My mom turned off the TV and said that I couldn't watch it if I was going to cry and be scared. I pleaded and bargained and ran into her bedroom and dusted my face with her Taboo dusting powder to cover any evidence of tears. By this time my sister was about to choke me. All you could see was white powder and two big brown eyes.  I remember mom laughing and turning the TV back on. OH JOY... so began my love affair with all things OZ. My inner child started collecting memorabilia when I was in my twenties, but I have a pretty good handle on it , just a few special items. In the past 10 years or so she has been pulling me into nostalgic thoughts of the past. Thanks to the wonders of E-Bay, I now have a well worn replica of my stick horse. He sits in a stand by the bedroom fireplace waiting for a galloping adventure. I was also able to find two versions of vintage "Thumbelina" Little Golden Books that occupy a special place in my bedroom bookcase. My bedroom has become my inner sanctum; full of faeries, trees with lights and a beautiful chandelier of little lights made by my childhood BFF Lisa. It's a safe place of soothing water fountains, seashells, mossy terrariums and my daughters beautiful water colors adorn the wall. I work very hard for it to be childlike and magical. It is my drama free zone..well except for watching The Walking Dead. Sorry, I'm just not willing to give up Daryl Dixon at this point.  At its center is the Granny Bed. I think everyone with FM and Chronic Fatigue needs their special space or time. I know its hard if you have a family to take care of and home responsibilities.Maybe just a bath ritual or an early cup of coffee.  I am alone, so I can be kinda selfish with my time and energy.  Well, I suppose I am not alone..I have my little inner child to nourish and as Dorothy says "there is no place like home". Home is always in your soul.

Friday, March 22, 2013

Missing: SPRING!

Merry and Pippen meeting their new foster bro' Happy Yappy Pappy(sorry about time date and stamp)
Oh what a miserable few days in the hills of east Tennessee. The wind is brutal and there is an overcast gray sky bringing us into the weekend. The past two weeks have been interesting for me. My rheumatologist  give me some samples of Savella for the fibro. I was hesitant to try anything after Lyrica and all the side effects years ago.  I started on a 12.5 twice a day and I must say that within 24 hours I felt a great difference in my pain level. I have slept like a log and I am waking up naturally around 6a.m. I have noticed it almost makes me a little jittery, especially the first few initial days. He told me to work up to 100 mg twice daily... I don't see that happening. What is wrong with doctors? That is a huge dose from what I can read about it. I don't tolerate medicines well and I usually get the full impact from sometimes only taking 1/4-1/2 maximum of the intended dose. It has been ten days and I must say i feel a little more energetic and I have had numerous people tell me I "don't look as tired." I have read some peoples nightmare reports of the side effects but so far, the only thing I can say for sure is that it has done something to my taste buds. Hallelujah! I have lost a couple pounds due to my lack of appetite. I am only taking around 3/4 of a 25mg a day and I am not taking one in the evening. The evening dose made me a little jittery and it was hard to go to sleep and  "ain't nobody got time for that"! must have my sleep... I have a new little buddy from our local no kill shelter.  I am fostering a whippet that was found laying by the road in the snow and covered with ice. He is deaf and probably around 10, definitely a senior. He had to have some tumors removed from his mouth and belly. Bless him, I am calling him Happy Yappy Pappy, due to his vocal delight of all things comfortable. As I type from The Granny Bed, he is  sporting his bright red sweater and snoozing beside me, much to the chagrin of my two little toy fox terriers who are pouting and are as far away from him as possible. I wasn't planning to get another dog after Sheila but plans are made to be broken.  I read a little poem that is called " A Dogs Last Will and Testament" and it just said it all, look it up on Google. I think with this relentless fatigue, fostering old dogs may be my life's calling. I understand their limitations and that they just need to rest in a  warm bed, feel a comforting touch and eat decent food. Don't we all? I sure could use a foot rub!!

Friday, March 8, 2013

Spring Forward...oh no not that!

Once upon a time, the thought of "springing forward" thrilled me to no end! Long spring days outside working  in the flower beds and time to take an evening walk in the warm air. Not anymore. All it means now to me and everyone else I know that has FM/CFS is the dread of losing another hour of precious sleep. I have been in the bed every night for months by no later than 8pm. It usually takes me about 4-6 weeks to adjust to this simple hour of time loss. It's been a totally bi-polar week of weather in the mountains of east Tennessee. Snow flurries, wicked winds and today sunny skies and around 50 finally. Again, what seems like a minor issue to some is a like torture to us folks that are sensitive to weather changes and fluctuations.  One of my best friends has had a tough week with her father experiencing a stroke but I am happy to say he is already excelling in re-hab and should be home soon. You can't keep a highland fellow down long... we are a stubborn and tenacious breed, so we give thanks for his healing. I have been slowly increasing my magnesium after a comment by a reader to this blog and think that it does help with my whole body relaxation before bed. I usually spend about one hour with the heating pad on my legs, back and neck before sleep and it seems to help.  If you have FM/CFS and you think you have sleep apnea, please if at all possible, have a sleep study. Mine revealed that I only was getting a maximum of 90 seconds at a time of stage 4 (restorative sleep) during both nights I was tested. Apparently, this is a very common condition with FM. I received my CPAP in May of last year and it has changed my life. I was suffering from terrible nightmares, that I honestly think were caused by oxygen deprivation and being almost dead! On top of that, three years ago I started having sleep paralysis with night terrors. I had the horrifying  feeling something was in the room and sometimes sitting on my chest. When it happens I feel like I am physically being pushed extremely hard into the mattress.  I was so terrified and I would be screaming in my mind to wake up and move, but could not. It is a horrible experience. With the CPAP, the nightmares are less frequent and I go into a deeper sleep and have so many "normal dreams",  which my doc said was good, because that showed I was spending more time in Delta sleep. Unfortunately, I am still experiencing the sleep paralysis. My sleep doctor just kinda "hhmmms" when I tell him about the feeling of something sitting on me. I know it sounds crazy, but to me it is happening. Since getting the CPAP  in May, I have averaged 10 -11 hours of sleep a night. I still sleep lightly and can wake easy, except when the clock goes off, apparently that is the deepest sleep and dream state just before waking. He also told me if you have been sleep deprived for years, it can takes months or years to get "restorative sleep". Apparently, the new school of thought on sleep deprivation is that the body does indeed try to restore the depletion. I had tried a CPAP in 2003 and couldn't wear it  because the face mask caused a rash and my ex said the noise disturbed his beauty sleep. The newer models you can barely hear and I have nasal pillows that work so well for me. I feel it is the most significant step I have taken in trying to regain some energy. When I go to see the doctor, I take the card from the unit and they pop it in the computer to see my sleep pattern. He is always like "wow, you are getting a lot of good sleep". Hopefully soon my body will feel like im restored, until then just call me Rip Van Winkle!

Sunday, March 3, 2013

Blustery Days

 Mother Goose is Feathering Her Nest
Farewell to the weekend...the fastest frame of time for all of us Monday through Friday people. It passes so quickly for me even though I do practically nothing. Most weekends are the same for me: pajamas, no warpaint and total introversion. I rarely leave the house.  Every Sunday I get the " Sunday Morning Coming Down" blues. You Kris Kristofferson  fans will know what I'm talking about. Mine certainly doesn't have anything to do with too much partying on Saturday nights. I have had the Sunday blues all my life, so has my sister. I think it is something genetically woven into the people of the Appalachia's. Some ancient Celtic/Scot Spirit who traversed the stormy sea's with our ancestors searching for a new home.  Some Sundays are worse than others, today was one of the bad ones. It has been a blustery weekend in the mountains. The skies are gray and it has snowed on and off all weekend. No accumulations, just the cold windy days that pelt you with a sleet/snow mixture. I have thought of my mom a lot this weekend. Yesterday for a brief, beautiful few minutes, the snow was falling in huge flakes that looked like white feathers. She would always say to us when we were little that "Mother Goose was feathering her nest".  She passed away in 2006 from Breast Cancer. I certainly do miss her, she had a way of straightening you out quickly if you began to throw yourself a pity party,  It's so easy with FM/CFS to feel sorry for yourself. I'm thankful  that for the most part, I am past that stage. Oh I still have my moments, everyone does. But when you have been looking this beast in the eye for 14 years, you have pretty much accepted your reality or you're mad as a hatter...or maybe both. I read so many blogs, especially from younger people, who are struggling with diagnosis issues and the loss of all that was a "normal"life for them. Don't get me wrong, you have absolute righteous anger at this point.  It takes time and much soul searching to get to your personal state of grace. You will definitely have a new normal if FM/CFS becomes your life partner. Many  people lose their spouses. I did, but our situation included his infidelity and he was a selfish, lying asshole( sorry I digress) so I refuse to let myself or this illness be an excuse for that type behavior. But in all sincerity, it is very difficult on a relationship to stand up to Fibromyalgia.  I'm sure there are sufferers out there who have significant others who are understanding and would love them through thick and thin.You better thank your lucky stars for that type of support, if you have it.  I am fortunate to have family , friends and co-workers that understand my physical limitations and my  moody nature. My sister also has FM/Lupus and is nearing the 20 year mark on her diagnosis.  We have several  cousins diagnosed with it, as well as my sisters daughter, who was diagnosed in her mid 20's. We say our family could have its own wing in a hospital with all the FM/CFS, Lupus and other auto-immune disorders we possess. My maternal grandmother was bedridden for as long as I can remember her.It both scared me and fascinated me that she lived in a bed. She had the physical ability to walk, but she said she was just too weak and tired, and that her head "swimmed". Of course now I know what she described was vertigo.  My first memories of her were the early 1960's. I think she took to her bed many years before that, probably at least 30 years earlier. No one in the family would talk about it, I think they thought she was mental (IMAGINE THAT!). So here we are, two and three generations later with the same ailments. Poor Granny...I feel your pain and frustration and I'm so sorry you were treated like a crazy hypochondriac by most family members, your doctors and your neighbors. So, I prop myself up in my very own Granny Bed and  give the world the finger on your behalf.

Friday, March 1, 2013

In Like a Lion

March-In like a Lion, out like a Lamb
What a difference a day makes. I certainly wasn't singing along with Prince this morning as I drove to work. The weather in East Tennessee has been miserable the past 24 hours...cold, windy and snow flurries. This type of weather wreaks havoc on CFS/FM patients. Today I could be singing Achy Breaky Heart (or legs, back, hands, etc .)  My hope for today is that the old adage is true "In like a lion, out like a lamb". Oh how I long for the warm winds of March. We really haven't had much of a winter, compared to the winters of my childhood. Anyone who thinks global warming is a fictional situation created by the far left is, in my opinion, a complete moron. That's as close to politics as I choose to wander.. I really don't want this blog to be a constant moaning and groaning about my miseries. I love humor and honestly could not survive a day without it. Even on my worst days , I try to prop up and at least watch a funny episode of some senseless TV show that will make me laugh. In my work (E911 Communications Director) each day is very stressful as you can imagine. I am primarily in an office as management, but i often listen to the calls when making recordings or working on Quality Assurance. Sometimes the calls are so heartbreaking it is almost intolerable. I am the supervisor of a fantastic group of employee's, the ones on the front lines answering the calls and getting help in route. These folks rarely get the praise or any type of acknowledgement of their jobs. The firefighters, paramedics, police officers and other on scene responders usually get the most attention, as they certainly deserve, but the chain starts with the phone call to 911...if they don't perform quickly and efficiently, help is not on the way. I don't want to be preachy, I just really appreciate all they do and what they have to hear and deal with day after day. Thank you to all dispatchers.   I haven't had any Chia seeds today, I will try to get back on the program tomorrow. Today was lunch with my sis and Chia seeds were not on the menu! Living in a tourist area we certainly have an abundance of restaurants to choose from. We decided on Longhorn Steakhouse for lunch and then on to Cracker Barrel for their Coca Cola Chocolate Cake...yep, warmed with vanilla ice cream.  Every week I say " I have never been so glad to see Friday". Today was no different. Work is a struggle for us folks with the plague, as I call it.  I pray that someone will find the answer and a cure for CFS/FM. I have several other family members with this condition, so I can't help but believe it has some type of genetic origins for some. My grandma Parton was bedridden with an unknown affliction. I will tackle that in a later post, tonight I'm just too tired. The Lion kicked my butt today...