Thursday, September 30, 2010

A good day

Today was a good day! I spent the day with my kids, my niece and her two little ones. We drove all over, we shopped, we laughed and had a good time. It was refreshing to not be in the house bogged down by the things that I can't seem to get done anyway. I'm tired but it is a good tired for a change and I have minimal aches and pains - WIN!

I think I'm actually getting a bit sleepy and for me, this is early (another win if I can go from the table to my bed without getting the "wide-awakes.) Acid reflux is still horrible but that's just going to have to be babied until I can get a new prescription. Hoping to go back to Aciphex, it really helped me before.

So to recap; Good day, great fun, very little fibro "stuff" ooh and I also managed to "fix" my blackberry all on my own. Took it to the phone store yesterday and the guy was not helpful @ all so...I came home, researched it myself and fixed it - yay for me lol!

All in all, I'm doing okay!

Until next time!

Wednesday, September 29, 2010

Hoorah for the Wii!

Okay, not that I'm ever not sore but wow!!! Played golf, bowling and baseball on the Wii yesterday with the kids and OMG! My should is right back to where it was 2 mos. before physical therapy - eek!

I know, I know, I was told it is an impingement but I know, deep down, that it's just the Fibro aches and pains. So, knowing that (because I'm a closet physician) I stopped going to physical therapy and work my arm @ home on the bands.....right now however, I'd LOVE a cortisone shot! Funny thing about that, I cannot do that from home lol!

Today, errands in town and then taking out 2 walls! Yep, I love to destroy my home then complain that it looks, just expanding my son's room so he and the daughter both have descent size living quarters. Of course, I have to do this myself because I have a completely destructive nature :)

I'm sure I will more than pay for my short comings - surely by tonight I will want to crawl into a fetal position and wrap myself in warm blankets for comfort but, it must be done and I'm wanting to see it through.

So, next time I write, I'll probably be typing "gently" as my arms will surely be about to fall off completely. lol!

Until next time!

Tuesday, September 28, 2010

Sleepless In Illinois

Another sleepless night - part of the wonderful world of Fibro.

As a suffer I can say, "for me,this is one of the "symptoms" that shows up 1st and more often than the rest." I spend many a night/morning watching TV, reading or on my laptop, simply because I cannot sleep.

Most often my lack of sleep is due to pain(s) in my back, neck, shoulders and hips but on other occasions it's more of an insomnia thing. My mind refuses to shut down, playing and replaying events in my mind from any and every time frame.

My father passed away in Dec. of 2008 and every night, without fail, I relive the night he died. It is on a continuous loop and that memory leads to others etc., etc., it is an endless cycle.

I would akin my "mind loops" to a type of O.C.D. truthfully. It's as if the process has to be completed before the body will relax. I can be falling asleep in the living room and by the time I drop into my bed, I'm awake and taking my mental journeys. I have to say that after 4 + yrs. of fibro, I'm a well traveled gal. lol!

Today, well - yesterday actually, I overdid it with the mowing....I knew there would be heck to pay for it but life has to keep clicking right? So, I had an evening of nausea and stiffness and now insomnia, I'd say a full boat by any account. :)

Well,tomorrow/today is a school day and errand day so I really must try to get sleep. You'd think our ungodly expensive sleep number bed would be just the ticket but alas, it is not. It is simply more tolerable than a regular mattress.

I would consider giving "my kingdom" for a bed like the ones in I.C.U. wards. The pressure changes automatically and at random in order to head off bed sores. It's just my opinion, but I believe that those beds would be a tremendous help for fibro sufferers.

Who knows, maybe one day, between medical "herb", motion mattresses and jacuzzis,fibro could become tolerable :)

Until next time!

Monday, September 27, 2010

I'm Asking For Trouble

Well,today I decided to push mow my entire yard. The only thing I can figure is that I have a desire to hurt because I keep pushing myself even when I know better. However, in my own defense, if you let it take you, it will take you all the way down. I can't allow that to happen, so I push.

I'm still having horrible acid reflux problems, my breakfast consisted of 2 Prevacid pills, 2 Tums tablets, 2 pieces of white bread and 1 Synthroid. I was stuffed so I thought a lack of sitting would be beneficial too. I've been done for almost 2 hrs. now and so far, so good, as far as pain goes. Acid unfortunately is back with a vengeance. I think most of that is directly related to my children and other "issues" in my daily life.

So to recap, no word salad to speak of (pun intended), no other "weird" symptoms and as yet, no horrible pain. I'm going to go out on a limb here and call it a good day. I think anything after 3 p.m. can be considered an entire day because I have been up since 4:30 a.m. lol!

Until next time!

Sunday, September 26, 2010

Wow, I Have a Muscle There?

Sore does not begin to describe how my body feels right now! Too much strain from ripping out carpet yesterday apparently, because I hurt in places I didn't know could hurt. Sleep was non-existing last night as even meds couldn't quell this flare up. Gentle hugs,(as a friend says,) are about all I could handle right now.

Word salad was fun today too, as I tried to speak/sing in church. I swear, making my words form properly is a full time job anymore. When the muscles flare, I can almost guarantee one or more of the weird symptoms are gonna show up too. I'm grateful that my daughter and I went to a movie so that I could have and hour & a 1/2 of not having to talk.

However, I have come to the conclusion that the theater seats are not so good for my body. Today was "okay" because we were two of three people in the entire theater and had our choice of seating. We didn't have anyone behind us, so I could stretch and twist and turn as necessary but when it's crowded, the seats really kill me. I suppose I could try not being so considerate and scrunching down in the seat so far huh? :)

On top of the fibro flaring, there are some personal issues eating at me too so I just know the next few days are going to be just "swell." Seems the more stress there is, the more flare there is. I'm too old to be feeling the angst that I am about the things that I do but it's there none the less. Guess using the words "swell" & "angst" really show my age too huh...but give me credit, I'm try to keep this blog "clean." lol!

So to recap; today was achy but blissful until I returned home....guess it was going to good for me or something. I'm beginning to think I'm on a cosmic "screw with me" list somewhere and every time I'm observed smiling or laughing, a wrench is tossed at me to see if I'll duck it, catch it or get hit with it - today, I got hit!

Right now, I'm going to drink my coffee, listen to the F1 race my hubby dvr'd and snuggle up with my computer. I hope the world leaves me alone for the rest of the day as I promise I will most certainly leave it alone :)

Until next time!

Saturday, September 25, 2010

What Possessed Me To Do That

Well, it's now 10:25 p.m. and I'm in agony! I knew the work I did was over doing it and that I'd pay for it. My body is aching in so many areas I couldn't begin to count. Well, that's just another day in the life of a fibro sufferer, work & hurt.

So, to recap the day - woke up feeling refreshed, a bit sore but overall good...worked like a fiend pulling up carpet, moving washer and dryer, cleaning kitchen/dining room. Went grocery shopping and on car ride home, BAM! My leg started hurting first and now it's in my neck, shoulders and hips :(

Guess it's time to med-up and head to bed. Here's hoping for a better tomorrow.

Until next time!

Strike While the Iron is Hot


Well today is certainly a new day! I went to bed way early for me and woke up today sore but feeling pretty good. So, when I feel like this I take advantage of it and get some much needed stuff caught up.

So far today I have cleaned my kitchen and 1/2 of the dining room and when my coffee break is over I will resume tearing out some carpeting. That just leaves 2 bathrooms, a bedroom and a living room destroyed - eek! lol!

My son has a borrowed turtle and an aquarium, they are in our dining room....he had to care for a reptile/amphibian for 1 month to earn a merit badge in scouts. Today is turtle's last day with us and then he can go home to his true owner. I mention this because that side of the dining room remains "icky" and will need cleaned after he departs.

I thought I'd post while drinking my coffee - right now, I'm feeling energized and I want to record it. In a while, not so sure how I will feel but this is a good way for me to track my body's rise and fall.

Well, break is over as I'm staring into the empty cup and the carpet is calling to me.

Until next time!

Friday, September 24, 2010

Sleep is Highly Overated

Morning! (again and so, so soon)

We are a sleepless bunch, us Fibro people. I've had people comment to me, "wow, came by your house @ like 2 a.m. and the lights were still on!" Yep, that would be me :) You'd think with the lack of sleeping I'm doing my house would be flippin' spotless but alas, it is not.

I'm the only night owl but not the only light sleeper in our house. The slightest "abnormal" sound and one or both of my kids are up, aside from the TV, no noise in the house after 10 p.m.

Anyway, all that "nothingness" gives my mind time to roam and spin and never shut down. I've been pondering the origins of my Fibro during my "spin cycle." I've always been sickly but I seriously think that this stuff is akin to something nerve related. If in fact that is the case, then I know of 1 significant trauma I experienced @ 29 but what about all the minor ones from childhood or when I broke my tailbone as a mid 20's something year old???

Other things that play through my sleepless mind, useless trivia, movie quotes, elusive songs and lyrics, etc. Facebook has opened a whole new world of, "where are they now?" that can entertain the mind for a few wasted hours.

Other than mindless, rambling thoughts, there isn't much else in my head today - obviously. However, at least I can attribute it to the lack of sleep :)

Until next time!

Thursday, September 23, 2010

I Spoke Too Soon!

Okay, well this is a lesson in not patting myself on the back before a project is complete - the washing machine did not catch on fire but it did hose down my laundry room with gallons of laundry water! Apparently, after the fire debacle of last week, the hose to the drain was not secured properly and my machine did its own impersonation of a fire hose!

Here's one of those "silver lining" moments, super sensitive hearing caught this before it was an even bigger mess. I thought my son was messing around in the bathroom because I could hear waves of water splashing (loudly) and when I called to him, he answered from his bedroom.

Upon further investigation, I went to the laundry room to discover it under siege! Luckily, I'm a laundry sorter so the assorted piles in front of the machine sopped up a lot of the water. Unfortunately, the carpeting caught the rest.

My son, ever the optimist said, "well, at least it smells good out here!" Apparently, my choice of laundry detergent was sound - lol!

There's actually 3 lessons in this mess; 1. As I said above, don't credit anything until it's completed, 2. Super sensitivities can be useful, 3. Good laundry soap makes a difference in more than one way!

Wow, only 4:30 p.m. - can't wait to see what happens in the next 6 - 8 hrs. I have left before bed.

Until next time!

Another day, another ache

Today has been uneventful - that is to say, I've had most of my wits with me and didn't get lost or mumble my way through class this morning. I did however do some "nascar" style driving in town today....wheeeeee!

Still achy but so far the flare up hasn't gone into "full blown" mode. This is a great thing considering how bad it was on Sunday. Total flare up then it receded as quickly as it came. Those types are few and far between for me.

I bought software today to help with the homeschool thing - I figured that on the days when I'm a babbling idiot, the software could take over. I just previewed it and it should work, it's equally as boring as I can be :)

Well, that's the summary of my day thus far. I drove and we all survived, I installed software and the computer survived and I'm doing laundry and so far, the machine hasn't caught on fire (yet) That was an adventure from last week - ooh, bad memories! lol!

However, and if you are a fellow sufferer you may want to note this - the super sensitivity to smells we have...well, they can, and do, come in handy on occasion. Within the last 2 months, I have caught 2 house fires about to happen and headed them off before we suffered! Win!!!!

I think that could be considered a good lesson for myself - everything has a silver lining, you just have to want to find it.

Until next time!

Wednesday, September 22, 2010

Foggy & Groggy

Well, it has been an interesting 24 hrs....had to load up on pain meds to get sleep last night - that always leaves me feeling groggy the following morning. Went to the doctor this afternoon and came home with 3 antibiotics - seems that the diverticulitis has decided to rear its ugly head again...oh well, what that really means is 10 days of more pills and no wine :(

On a lighter and sillier note, my word salad has been a real hoot today! I have muttered and mumbled through the entire morning which made teaching school super confusing for the kids :) Good thing the word lists are pre-typed or they would have been spelling some really odd words.

So, here I sit, back @ the computer trying to make sense of my crazy world. I have decided that I'm going to have some shirts made up - they are simply going to say, "I blame it all on the Fibro!" It should cover anything that I may say and/or do that seems out of the ordinary :)

Until next time!

Tuesday, September 21, 2010

Foggy Morning #1

Morning - Notice I didn't say "Good Morning?" I try to never start a conversation with that phrase simply because it usually isn't. lol!

So yesterday I posted and told you all about my "Fibro Illnesses" and lo and behold, after reading it this morning I realized that I forgot some stuff! ***gasp*** shocker huh?

I forgot the hemorrhoids, which I'm betting you're very glad to hear about. I forgot the overall fatigue/malaise, maybe I was just too tired to put that on originally (**snark**) Then there are the truly "quirky" symptoms such as; sore to the touch, I often feel bruised and the slightest touch sends me into orbit. I am super sensitive to light, sound and smell....those are some real crowd pleasers!

My son is responsible for taking out the garbage in our house. I tell you this because he deserves a ton of sympathy. Not because he has a chore to do but because when your Mother has a smell sensitivity, are taking out the garbage way more often than you normally would have to. We go through a ton of garbage bags too because of it.

The sensitivity to light has subsequently caused my vitamin D deficiency - I don't know if I put that one on either lol!

Ooh, another HUGE quirky symptom, textures matter! I wish I could say it's limited to clothing but not with me. I am overly weird when it comes to the textures of anything that comes in contact with my skin or tongue....certain foods are impossible for me to eat because of texture. I am limited to what I wear because of the feel of the clothing on my skin and there are even times when I have to put a sheet over my chair because of the texture of the's that for weird.

Then there's the "can't swallow" thing - and if you turn that into a piggish thing, shame on you! lol! Seriously though, I have lots of trouble swallowing and at night it causes me to choke and wake up gasping.

Digits swelling, "purpling" from Renaud's and calcium deposits too......these, along with the swallowing things were in fact confirmed by my Rheumy as documented fibro issues.

After reading over this stuff, I can understand how so many docs think this is a syndrome of the mind...I can. However, unless there is some sort of unspoken, mass hysteria like thing sweeping the globe, then I don't see how that would even be remotely feasible.

With the recent discovery of the XMRV retrovirus, it gives me hope that all of the mystery about this disease/syndrome will soon be put to bed. Surely the medical world won't shun a real, honest to goodness virus??? *said with tongue firmly planted in cheek*

Excited and hopeful for vindication is more like it. Sufferers from Fibro and Chronic Fatigue have been looked down upon for so long that recognition is as high a priority as cure. That is a sad truth in itself.

I personally struggled for years before a diagnosis was given - I cannot work outside the home because it is so unfair to expect an employer to understand that today may be good for me to come in but I don't know about tomorrow or even later in the day today.....the flare ups are quick and unpredictable as are the amount of time they last.

So there you have 2 of the blog and all it was was expansion of yesterdays. This could go on forever @ the rate I forget stuff :)

Until next time

Monday, September 20, 2010

Fibro & all of its ugliness

I'm writing this blog because, well...with the fibro, my mind is mush 99% of the time - that is unless I'm writing. This seems to be the only way that I can put words together without them jumbling all around and coming out sounding like gibberish.

My name is Haley, and I have Fibromyalgia. I'm not sure how long I've had it as I have been plagued with illnesses since I was little. However, my official diagnosis came around 4 years ago.

As anyone with this debilitating "syndrome" can tell you - there is no consistency with regards to symptoms or flare ups. Each day, each moment is different and because it is elusive and confusing to the sufferer, the families, friends and employers of those individuals don't stand a chance in comprehending it.

So, I decided to chronicle all the little nuances of this horrible disease...yep, I said disease. Anyone who lives with this stuff knows that syndrome doesn't begin to justify what we go through. Only the word disease suites Fibro and all the yucky stuff that comes with it.

For example...when "normal" people go to the doctor, they fill one maybe two things out for their medical history. Current illnesses, prescriptions, etc..right? Well, I carry a piece of notebook paper, in my purse, listing everything I have/take - just so it's easier for me and my family. The nurse can copy it, attach it to my file and move on way quicker than it being recorded on the information sheet.

Okay, here goes - this is what all I have, currently

Spinal Canal Stenosis
Degenerative Disc Disease
Herniated/bulging discs in the cervical & lumbar regions
Pinched nerves in the cervical region
Bone spurs on both sides of the cervical region
Kyphosis and lordosis (reversal of curvature of cervical and lumbar endings)
Arthritis in all of my joints
Irritable Bowel
Repeating Kidney Stones
Early onset Glaucoma
Bell's Palsy
Pulmonary Hypertension
Bipolar Depression
Sleep Apnea
Nasal Allergies
Heart Murmur
Low Blood Pressure
Multiple miscarriages (5 to be exact)

As for the medicines I take; Claritin and Singulair (for the allergies), Flonase and Nasacort (for the allergies), CPAP treatment (for the apnea), Welbutrin XL (for the depression), Elavil (for the depression and the IBS), Synthroid (for the hypothyroidism), Calcium, fish oil and flaxseed supplements (for various holistic reasons), Advair (for lung function), Prevacid/Prilosec (for ulcers/GERD). Then of course there are pain killers such as Darvacet and high dosage Ibuprofen but those irritate the ulcers so most of the time, I suck up the pain without them. I also have xanax for when the stress gets too bad and muscle relaxers for when the spasms won't let up.

Now, try putting all of that on those little forms - it is no picnic!

Even with all of those negatives, I would gladly keep all of them if I could trade, what I consider, the worst of the fibro symptoms....the fibro fog or memory loss/lapse.

I can only remember snippets of my children growing up. I've lost entire activities, days, weeks, months, etc. I have been driving and forgot how to drive, I have put my mail and keys in the fridge and the milk in the cabinet....I have a tendency to ask a question and then block out and or forget the answer almost immediately.

These are the worst, without question...this is the hardest for me to deal with. Just today, my loving husband came into my bedside to tell me goodbye. He was leaving for work just like every morning but today...well, he said we had a conversation and that the dog came up there too and he scolded her, etc.

I awoke some 2 hrs. later, having no memory of our encounter, what so ever. I was afraid that he had gone off into another part of the house getting ready for work and something happened because he didn't tell me bye. I was scared that he was in there somewhere needing medical help or maybe fell asleep on the couch - I jumped out of bed and ran through the house looking for him.

His lunch bucket was gone so I looked to see if his truck was gone. It was, so I texted him to ask him why he left without a word to me. He called me and filled me in on our conversation that I had forgotten ---- what will I forget next???

I don't know but I hope that I somehow learn of it so that I can blog about it. Maybe then, if I forget it again, I'll have a written record of it.

Until next time.