Fibro Life, Friday


Please, just let me sleep, don't find me...

I am too tired to keep my head up, I tried to make good on advice to get out more. As Fibro patients know, I’m paying the price. Minus two spoons. I owe two spoons from tomorrow, not that it really works that way, right fellow spoonies? We really can’t win either way.

I generally never complain about Fibromyalgia, Savella and Tramadol usually do the trick but then again, I haven’t pushed myself this hard in a long time. I really have to ask myself if it is worth it? When I am racing around town, doing errands, getting my hair cut, drinking a strong cup of coffee, going non-stop I am NOT able to handle it because apparently now, I am a wreck, a demolished car on the side of the road, Not one part left, it’s sitting up an embankment totally crushed.

I have given the same advice to my friends “don’t do too much” but I didn’t listen to myself today because I was on a new mission to “live, to explore, to get out of the house.” Yep, I overdid it.

I might be so tired that I can’t even eat dinner. Nah. Who is kidding whom? I’m sure I will perk up after food, I smell chicken breasts on the grill, the salad is on the table already, I’m chopping tomatoes for bruschetta. But, really, all I want to do is to curl up in a ball and somehow loosen the muscles in the back of my neck and fall asleep. I don’t see that happening nor do I see myself cleaning my room and organizing it.

Let me stay here, in the midst of my bed, covered with clothes and freshly washed laundry, next to my calendar and my phone and a pink and blue pen. I will push things aside in a corner, I won’t complain, not a sound will come out of my exhausted mouth except the sweet snoring sounds of an overtired, head-throbbing, weak patient.
Don’t tell anyone I am here, I am so broken I don’t want to be found. I just want to sleep. Shhh, please just let me.
* Two images should have appeared, if no images appeared, I will let zemanta support know again, feel free to join me. Thanks in advance. If they both appear, I will be delighted!
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This New Waking Up At 5: 30AM Is Seriously Getting On My Nerves

If (when) I get cranky during this post you can blame it on the lack of deep, constant, uninterrupted sleep. I’m cranky just thinking about it. This has been the fourth or fifth night in a row and correlates beautifully to the new medicine to raise my blood pressure.

True, I am not passing out and smacking my head getting bumps the size of baseballs but still, as any chronic pain or Fibromyalgia patient knows, sleep is our vacation. I wish I would be kidding but I’m not.

Insomnia

Insomnia (Photo credit: Alejandro (Lì Delfos))

Literally, going on vacation stresses our bodies more than staying in bed, not that it isn’t worth the risk at all. So, this old body now awakens way too early in the morning and today it’s not even a sunny morning but a gloomy gray one. Of course, I try to go back to sleep but it never works. Also, I can’t nap anymore.

Fibro: The Way It Is, make something better, make something worse. A trade-off. Ugh, I’m disgusted but with Fibro or any Chronic Pain Disease when aren’t we totally fed up? Usually I can handle it very well and I am NOT a complainer but now I am definitely cranky. If I can’t run around and have some semblance of a normal life at least let me enjoy my sleep and sweet dreams.

I guess that’s too much to ask, isn’t it? I’m giving this drug a few more days and then I will begrudgingly call the doctor as promised. I know he is just going to give me one pill after another to try but I wanted fewer pills not more. Granted, passing out at any time definitely had its disadvantages and the fact that no one call feel my pulse was a little scary but there must be something in-between?

Before you tell me about any type of herbs or supplements I am NOT allowed to take any, because of the chronic kidney problem. It’s time to do some deep breathing, now that I’ve written my frustration out here, hopefully I’ll feel better soon.

If not, there is always leftover pizza with grape jelly.

IF I had some.

Nestle Toll House Chocolate Chip Cookies

Nestle Toll House Chocolate Chip Cookies (Photo credit: fritish)

Since I LOVE FOOD and SWEETS maybe it’s time to make Nestle’s Tollhouse chocolate chip cookies. Just one, maybe two before bed with a very large glass of milk. Milk is medicinal, it helps you fall asleep.

That is, of course, why I will bake cookies today, all in the name of science.

Cookies? Check. Ice Cream? Check. Impulse Items? Check.

WELCOME HOME

 

I haven’t had the energy to go grocery shopping (something I hold near and dear to my heart) since early Spring. I’ve had all my illnesses flare up at the same time: Fibromyalgia, Hashimoto’s Thyroiditis, Syncopy, Fainting and Crashing, No Energy etc. For me? A tragic loss. For the supermarket? A major deficit. I’m not joking (as most of my readers will tell you) I LOVE FOOD, good food, strange food, NEW food and products. I will always look at every item on the shelves to see if I can spot any new items. I always can and I always buy them. I have no idea what the photo below is showing but that is a product I would definitely buy and eat, wouldn’t you?

Fastelavnsboller

Fastelavnsboller (Photo credit: Wikipedia)

 

 

 

 

 

 

My husband came along for this trip just to see if I could physically make it but once we were in the store I shot out with my carriage grinning wickedly. I don’t need a list nor do I want one. This is my home. I look at every item in every aisle and I know what I need, want or have to have for that week.

I knew it was a mistake NOT to go into marketing after I graduated college. I am the one to pick out the next new product, the new sensation, the new flavor, I’m a marketer’s taste test dream. Is it too late? I am at my prime, have your people twitter my people.

My mom says I have been like this since I’ve been five years old. I haven’t outgrown it and am proud to say my children, have inherited this hobby too. Even now, in their twenties, they love to go shopping with their mom.

For a while when I was younger (no, I’m not kidding) my then boyfriend, now husband, watched a show called Supermarket Sweep. We watched the original show every single night when it first came on. We toyed with the idea of getting married in a supermarket but somehow never went through with it; I regret that.

Stew Leonard’s is a great place to shop and fun too. I bet they would help if we could talk my (un) romantic husband into the idea. Right near the mooing cow! Don’t get me too excited, please.

Stew Leonard's

Stew Leonard’s (Photo credit: JeepersMedia)

Anyway, I bought: (New Product) lemon ice cream with mashed lemon cookies inside,huge, soft oatmeal raisin cookies (new brand) some new kind of skinny-ish popcorn for when you need something slightly salty but not fatty while you are watching a movie at home.

 

Also, I am now taking a new medication for my fainting spells, the fancy name is Syncopy also: Fibromyalgia, Hashimoto’s Thyroiditis, Narrow Angled Glaucoma, Eppiglottitis, IBS,  and others. I now have to have breakfast. I bought apple, blueberry and strawberry breakfast bars. This is the first time in all my life that I have eaten breakfast, my mom will be so pleased.

Usually, it’s just that steaming cup of coffee in my white Starbucks mug with half and half and one sweetener. I look forward to the smell and the first sip every single morning.

After that, I just go on with the boring details of my day. If I don’t feel the need to nap, I feel it is a personal triumph. Then our dinner conversation begins around 4pm. What shall we cook?  It doesn’t really matter, last night we had hot dogs, baked beans, and broccoli, the night before pizza but they are all precursors to the most important part of any meal: dessert. The lemon ice cream dessert:

Lemon

I dipped my spoon, my little spoon, into that new lemon ice cream, slowly, tasted a small bite, let it linger on my tongue and swallowed slowly, making sure I had a cookie bite with the ice cream. I was hoping for a dance sensation in my mouth or as my husband and I used to say “I hope it dances.” Did it? Oh yes. After half a cup of delicious lemon ice cream with bits of lemon cookies, I have found a new love. It’s so nice to be in love again, I feel tingly all over.

 

Children: The Moon, The Sun And A Fibro Flare Up

Sigh. Welcome. I know you are here even if I don’t have any interest in wanting you to be here. I know you have arrived in town, I can feel the physical essence of your negative energy from the follicles on top of my aching head to the bottom of my over-extended curled toes. It would be too simple to describe how I feel as “everything hurts” or use my example “it’s like having the flu every single day without the temperature.” People try to look sympathetic while they are trying to figure out if I have lost my mind. No, sorry, we are NOT crazy.  My husband was right, my balance is really off and I should have brought my pink cane that I use, on occasion. Fibromyalgia is no one’s friend.

Moon

Moon (Photo credit: Paul Garland)

Thank goodness we have for best friends and Fibro Friends, we understand each other, we know how we feel. We don’t really need to explain. I don’t have to tell my fellow sufferers how I will feel when I have to spend over 6 hours in a car. Yep, you heard me 6 long hours to get home from visiting our amazing children and that’s with no traffic. It’s realistically more likely 6 and a half to seven hours but that burns like acid on the tip of my coated tongue.

We traveled to see our adult children at their perspective colleges and I wouldn’t trade that for anything but on the way there we stopped halfway so my pain, Fibromyalgia, would be manageable. I assumed the same thing was planned for going home. It was not. How did this happen? I have no idea except that my husband did the arranging and he probably told me what he booked but with Fibro Fog, confusion and loss of memory, it did not sink in.

In the end it didn’t even matter, we are now home, we saw our adult children and whatever physical pain I suffered was quadtrupled  every second I was with them. I might make different arrangements next time but I don’t even care. That’s what Love is. Simple, Straightforward, Us, Them, Family.

Think of me, taking whatever drugs I have, including but not limited to, Benadryl,or  Xanax that might relax my muscles enough to get me through the trip, curled on the back seat cushions, going home.

I adored seeing my son and daughter, and I would do anything for either of them. I love them so much, so very much that pain and stiffness and being out of sorts for a few days, will help remind me of why we went to visit.

Sun Rays Dancing…!!!

Sun Rays Dancing…!!! (Photo credit: Denis Collette…!!!)

We went to visit the moon and the sun. Two things I cannot live without and two things that I enjoy simply by watching. My grown-up adult kids. They are worth every darn tingle, ache, pain, IBS attack and a host of many more symptoms; so when you hear me complain, please tell me to shut-up and to remind me of how worth it, it really was. Love, family love is, what matters and pain is just a side effect. It will get better, hopefully, in a few days. Just being around them, gave my husband and myself incredible joy. It was worth every single second of this trip and many more. We have GREAT kids, each one a delightful pleasure, we’re lucky to have them in our lives. We appreciate THEM.

Thank you, kids, for having us, we loved seeing you in your home. It was great for all of us, especially me to show me how much both of you have learned and grown-up. I’m proud of you both. Really proud.

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Fibro Girl, Grey’s Anatomy And Me

Grey's Anatomy (season 1)

Grey’s Anatomy (season 1) (Photo credit: Wikipedia)

When I think of “Fibro Girl” I imagine a small, spunky superhero with brown hair and round black glasses and a red cape that has a big bold black F on it. I don’t know why I think of her that way but it amuses me. Maybe because it’s such a juxtaposition between her life and mine. She is trying to fight Fibromyalgia with her strength. I have NO strength. When I was FINALLY diagnosed with Fibromyalgia, seven years ago, my strength was taken away.

Our lives with this illness are question marks. It is hard for us to plan ahead. In fact for me, it’s impossible. For people who DON’T have FIBROMYALGIA OR DOUBTERS (seriously? still?)  I am physically unable to commit to a date in the future without the caveat “depends on how I’m feeling.”  People who cannot understand that are not true friends. We didn’t ask for this, we wish we didn’t have it. Believe us.

My current experience with Fibromyalgia is that I am able to do one errand per day, MAYBE two. If I push my limit I’m wiped out and pay for it later with exhaustion/ pain. At the moment I am not suffering as much physical pain as I had in the past. (see past Fibromyalgia posts) There’s always some pain but I have learned to accept and manage that pain because of a great doctor and the right combination of Fibro drugs. Now, doctors are worried about a new “balance issue” which has nothing to do with Fibromyalgia.  More tests, a pink cane….I can’t walk a straight line, two perfect CAT scans. Can we stop now? No.

Fibromyalgia takes control over us. I’m embarrassed to say that I never thought about it that way. Amazing how our lives change so quickly. If stress is indeed a factor, I’m in deep trouble. My husband got laid off 2 days ago. I can’t work even though I want to and we need the money but it’s not possible. It doesn’t seem right to punish us for something we physically cannot do. Not right at all.

We don’t live in a perfect world, although I really do know people who live a charmed life in every aspect of their lives. Lucky them, maybe they have dark secrets but I doubt it. All I want is a break in having to struggle every single day with some new illness or symptom. The umbrella of Fibromyalagia has so many illnesses underneath it I go to the doctor(s) way too much.

Right now, with the weather is getting colder. I always feel worse when it is cold outside. Then, a good time for me is staying in bed with my dog lying next to me, watching Grey’s Anatomy, Parenthood or The Voice. The television has become my life line. That and this computer connecting me to friends with Fibro and without. We do the best we can with what we have. Minute by minute, day by day. We’re in it together, holding hands, on-line and off.

Escape To The Bedroom

8773 - St Petersburg - Hermitage - Aphrodite

8773 – St Petersburg – Hermitage – Aphrodite (Photo credit: thisisbossi)

I’m so tired, my eyes are threatening to close and go on strike forever. I see puffs of clouds through jagged corners of my weary green eyes.  Believe me, I don’t want to fight you, I just want to go under my covers and sleep. It is the fourth day of gray, cold, damp weather and I try to pretend I am not even here. My Fibromyalgia tender points are raw, if I even touch one gently with my soft finger I scream with pain. It’s as if a rainbow of sharply pointed colored pencils plunge deeply into my tender points with the power of a strong hammer, the tip of bold silver needles aiming for precision. There is no cure and no release, not on these cold, damp days. Welcome to my chronic world.

I am taking a trip now, escaping under my blankets, where I belong. It is warm and sunny, I regret not having stronger sun glasses.  I am wearing a short, dark blue denim skirt that I haven’t been able to fit into for 20 years, I have a white V neck short-sleeved top with stunning embroidery around the lace yoke, a colorful beaded necklace around my neck, blue, yellow, pink, purple beads held together with silver strands. I am wearing silver sandals and freshly painted pink toes and I am smiling, happily. I move my head to catch the breeze and my hair feels like it is joyously dancing. I am not alone.

My lips have just been brushed, my breath stalled, the lightness of butterfly wings with unfamiliar lips brushing mine and lingering for a second too long to think it was an accident. It is just a touch, which makes my heart start to beat rapidly, and I have  t rouble regulating my breath. Both of us linger, for a second, in the air as we try to understand what just happened. That first question of possible romance and sexual curiosity being stirred up after such a long time. Who knew that they still existed? I thought they were gone forever, I fooled myself into thinking that because it made my dreary life easier.

‘I feel awkward and shy, my cheeks blushing pink, childishly and I try to hide my face from my new love but he misses nothing. He curls his hand and gently strokes my cheek, lovingly as if I was a precious gift. He looks at me as if I am his treasure, I don’t remember feeling like anyone’s object of worship ever before. This is separate, a later in life gift, a precious offering that I am trying to fight but know I will attempt to struggle hard and eventually may give in. Who doesn’t want to feel loved and sensual and appreciated? Who doesn’t want their body to be stroked so slowly and lightly that all your senses awaken like budding flowers from the long, dark, icy winter. I have never heard compliments murmured in my ears, whispering loving phrases as if my body and soul were a beautiful sculpture, more beautiful than Aphrodite.

I am yours, under these covers, in our world, in my head. You keep me alive, you make me vibrate and tingle until I can imagine I will see you the next time. We both long for that, sometimes not having the access immediately intensifies the passion, the lust. I want our eyes to meet again, the first second of shyness, the second of hunger, of greed and then…..’

Someone is pulling on the covers, intruding on my safe world, someone is screaming for me to” wake up.” No, I don’t want to leave but leave I must. I don’t want to return to that world with its gray dullness seeping into every molecule of my ordinary self. My brain is dead, my emotions flattened; I am jealous of my own fantasies.

Fibromyalgia 2013 – UPDATE

#Fibro - Awareness Day

#Fibro – Awareness Day (Photo credit: sand625)

I’m being a bad patient. Yes, I’m confessing. I have a doctor’s appointment with a new rheumy (as us Fibro patients like to call them) a new rheumatologist in about a week and I think I am going to postpone it. Again. My old rheumatologist who I do indeed love, takes about three hours to get there and back, usually more, and this one is only twenty minutes away, I’m getting lazy. However, this is the height of flu season and I really do not want to expose myself to the “flu factory” that is my doctor’s office. It is not just one office, it’s two buildings of sick people for every specialty in the world. It’s a factory for any illness you can think of. In addition to having Fibromyalgia, I also have an auto-immune disease of the thyroid called Hashimoto’s Thyroiditis. Just glance at me and I will catch it.

This is a tough choice. Had I been feeling extremely poorly now with Fibro I would surely go for the appointment but the fact is I’m feeling pretty good. (I know, don’t jinx it) It’s the first time in many years that I am NOT complaining about aches, pains, moving or walking. SHUT UP! my friends will say but no, I cannot. Of course, I still have Fibro Fog to the extreme (really scary) and I am on enough medication to kill a horse but this last combination of drugs apparently is doing a little something-something. You guys understand…

Sure, I suffer from the tender points, but I don’t even count them, they are as natural to me as getting up in the middle of the night to pee. I accept it. And yes, I have all the other symptoms of Fibromyalgia: IBS, tingling, headaches, “yada yada yada*” but overall I feel better. I’m not asking for fabulous, I’m just satisfied with better. Better to a Fibromyalgia patient is like a miracle, BUT it is a miracle for however long it lasts. I think a lot of it has to do with my endorphins being raised quite a lot. Wish I could say it was from exercise but let’s not get too crazy here. It’s the result of medication, and no, not-self medication.

Right now, I’m just appreciating feeling a little different, in a positive way. I want my Fibro friends, and the newbie Fibrosmyalgia patients to know that it is, indeed possible. Don’t give up hope, maybe one day you will feel better too with the right combination of medicine. Keep fighting. I know there is no cure but you need to trust your doctor, or team of doctors and they need to believe in YOU.

For now, until it changes, I am happy, fine, content. Do I think it will stay like this? Probably not. Do I hope so, definitely: yes. But, as we all know with Fibro, we have absolutely no control over anything, which really is the hardest part of all.

Let’s wish each other a whole lot of luck.

If you have questions for me, especially those who are new to Fibromyalgia, feel free to ask, I’m happy to help.

*yada, yada, yada from Seinfeld

Fibromyalgia And Flunking The Sobriety Test

Sunset Police Car

Sunset Police Car (Photo credit: Wikipedia)

Calm down, it’s not what you think. I can’t handle alcohol on ANY level, never could. Way back in my college days my friends would order a pitcher of beer and a Coke for me.  My now 20-year-old son’s advice is that I didn’t try hard enough. I should have just kept drinking because “it gets better.”  I’m sorry. I’m apparently a disappointment to my daughter and husband too.

One would think with my distaste for alcohol I would potentially have NO trouble with the law. That might not be the case. I went to my doctor, months ago, because I had consistent tingling in my legs and my internist (of course) referred me to a neurologist. The appointment was made and I forgot about it while my husband and I vacationed in Rhode Island for a few days. We had bright, sunny skies, we dug our toes into the silky sand, and ate raspberry scones, home-made sticky baked french toast for breakfast every day with a bowl of fresh blueberries and inexpensive lobster rolls at night. We napped daily.

One day I remember walking towards our car to my husband and then……. I was down……. I was on the floor, lying down, face down and have no idea what happened. Did I black out? Maybe. My knees and legs were bloody and filled with gravel but luckily my face was in good shape, apparently at the last-minute my husband said my arm came up instinctively to save my face. I hadn’t slipped on anything, there were no stones to tumble on, there was no logical reason this happened. I hadn’t twisted my ankle or sprained any ligament. I just went down. I wasn’t happy. Nobody was happy.

Upon my return I was even more nervous about seeing the neurologist who had ordered a plethora of tests including a CAT scan. My brain was perfect, the tests were perfect. Except for one. I could not, literally could NOT, walk a straight line. He told me I flunked that one outright and he had no idea why. He also felt there was no need to pursue it after seeing my brain scan. It’s true that a symptom of Fibromyalgia is imbalance but drunken-looking imbalance? Let’s say I was tired and driving sloppily, imagine a police car pulling me over and asking me to walk a straight line, maybe they would even give me a do-over since my breathalyzer test was normal…. I swear I’d be in the slammer pretty darn fast. Hopefully, you can still make one phone call. Even better, do you think I should get a doctor’s note?

Haiku Heights-Pain

A Pain That I'm Used To

A Pain That I’m Used To (Photo credit: Wikipedia)

A knife through my hand

crimson blood pouring out fast

A heart, numb, frozen.

*****

No contact, no love

Babies without touch, react

Doubt, afraid, for life.

*****

Your breath near mine, close

the beat of our hearts, different

Tears tell our story.

*****

Brittle bones, swollen

raw, excruciating pain

A Fibro Flare Up.

Sadness 90/365

Sadness 90/365 (Photo credit: SashaW)

*****

Alone, we will be

No guarantee in life, death

Be at peace with One.

The Fibromyalgia Sorority- Update

Ping Pong game by Parker Brothers, The Childre...

Ping Pong game by Parker Brothers, The Children’s Museum of Indianapolis. (Photo credit: Wikipedia)

August 5, 2012

I promised an update and I keep my promises but it’s nothing “earth shattering” as my Mom is fond of saying. It’s just the same old, same old. I did go back to the neurologist for results but everything was fine. To me, that was good. He figured out that the tingling and imbalance could have been caused by the drug Topomax, but why I fell flat on my face for no reason he couldn’t answer. To him, he looked vaguely disappointed a) because he couldn’t help me and b) I was no longer of interest to him. He made that VERY obvious. The difference between the first and second appointments were like night and day. I stopped Topomax which now leaves me to go back to the Rheumatologist but I am not in any hurry. He was the one who prescribed Topomax. (Did he not know better?) From one doctor to another, I feel like a ping-pong ball.

Today, it is beastly hot and humid and I can barely get from the house to the car, this weather is not ideal for those of us with chronic pain, imbalance, weakness. There’s only a couple of days during a few weeks when we have ideal weather but that does not guarantee feeling well.  The winter is really rough, icy winds and snow but the summer’s humidity feels like I’m suffocating.

I went with my daughter to one store for shopping for college and there was no way I was going to miss it but I sure wish there were more chairs and benches to sit on for those of us who need a break. I’ve found holding on to a carriage is helpful and sometimes, if I really feel bad while I am there I can use the electric carts. I didn’t want to do that with my daughter but that’s a blog post of a different kind…..I’m sure those of you with teenage daughters understand.

How can we look forward to any day when we don’t know how we will feel? I used to set things up in advance, make plans with friends, go into the city, or to a movie or a museum. Now, it’s like the earth has to be aligned in 940 ways before I even think about it. Not too hot, not too cold, not humid, not torrential downpours and then we have the symptom assessment. What hurts, what doesn’t (rarely an answer there) have I slept well? Everything is so complicated now. I envy my old life, pre-Fibro, but I have accepted it is gone. I wish one or two of my family members would accept that too.

People still say stupid things and most people, unless they have Fibromyalgia, JUST DON’T GET IT.  Those of us who have it are unlucky members of a very big club. We understand EACH OTHER.  Fibro sufferers, if nothing else, be glad we have each other. Perhaps we could all become sisters (and some brothers) in a Fibromyalgia Sorority. Fi Kappa Fibro anyone?