Sunday, December 5, 2010

December 5, 2010

I'm so tired. I didn't sleep well last night. Got awakened when husband and cat had a fight at 2:45 this morning. Spent the next 30 minutes trying to find where the cat had peed in the apartment. Finally found it in my room. He had peed on one of my skirts that had fallen on the floor off the pile in the basket. Not much fun when you're on your hands and knees feeling the floor under the bed, under the desk, and anywhere else I could think of with husband making comments about my room being a mess. I was getting pretty ticked but just kept my mouth shut since I didn't feel like having a fight at that point. I just wanted to yell at him to stop being so damned insensitive. He forgets that I get easily exhausted at the worst times. Drives me nuts sometimes. I know I shouldn't be so sensitive to comments, but I am since I keep thinking I can do it and pay for it for the next few days. Grrr... 

So I finally went back to bed around 3:30 and it took a while for me to fall asleep again because my knees were complaining big time from going around on all fours. Woke up at 8:30 this morning, Andy was still up, he told me to go back to bed, went back and slept until 10 am and got up. My hips and knees were hurting too much for me to go back to sleep. Sat on the couch to get some knitting and crochert done and fell asleep there. Woke up at 1:30 this afternoon and I'm still exhausted now at 6 pm :( I tried for a nap around 5 but I couldn't fall asleep, just kept tossing and turning and not finding anywhere comfortable to lay.

I'm also out of metamucil and have to buy some tomorrow. The IBS is having a ball right now. I feel absolutely full, nothing's moving and all I've had so far today is a few crackers with peanut butter. I have a coupon for another brand, will have to see which one comes out cheaper. Doesn't help that my fibro kicked up a storm since friday. I want to up the amitriptylenes like the dr. told me to do when the pain is worse, but that would mean that the prescription runs out sooner which I really can't afford right now. I'm taking tylenol with codeine (generic) which gives my bowels issues, but i need something to dull the pain in my body. Probably why I'm also tired, I keep getting jabs and twinges in my arms and back and muscle knots (charley horses) in my legs. Stupid tremors have started up again off and on. And I've woken up twice in the last 3 days with my heart racing which means anxiety attacks. I don't get any during the day but apparently my brain is having issues while I sleep. So much fun living with a wrecked up body. 

The job I was hoping would become permanent has been delayed until the beginning of January. Whoopee :(
So it means I'll have to go apply for welfare this week since we have no money for anything right now and we need prescriptions filled and food to eat and rent to pay on January 1st. Can't do much with the pay for 8 days. It covers the rent and that's about it. 

I have some paperwork from the neurologist stating that I have problems getting around and need assistance and have major pain. I hope that welfare won't give me a hassle. I'm seeing a family doctor for the first time in 6 years. Been looking for one since we moved out here with no success. At least I have one now, just hope he's open minded about fibro. I think I have enough benchmarks that he won't kick up a fuss about it. Guess I'll see next week.

Just wish I could sleep decently. I feel so frakking tired every day irregardless of if I do something or not.

Thursday, November 18, 2010

November 18, 2010

I keep having memory blanks and it's getting worse.

I can't think of specific words. It's like the storage part of my brain is kicking information out, either words or meaning of words or strings of words like a message, incident, etc...

Today for instance:

I was emailing a friend about a price difference for water between the grocery store and the local .... this is where I drew a blank..... but could think of these words to describe the place: where I get prescriptions filled, buy toilet paper, etc.. but could not for the life of me remember the word "pharmacy". Even now! I had to go look it up again by typing fill prescriptions in google. Once I see the word, I recognise it as the right one.

Last night, I was trying to tell my husband something and the same thing happened with other words. I can't remember what I told him either at this point. Both of them have pointed out more and more that I keep repeating things, messages, information, etc, sometimes 4 or 5 times over the span of several days sometimes in the same day. And each time I do not remember the previous telling.

I find this rather disconcerting and embarrassing and I'm not sure what to do about it. I read a lot so it's not for lack of practice. I have problems remembering if I've seen a show or movie until I actually start skipping through it and recognise some of the scenes or dialogue. And this is where I actually prided myself at being able to tell the plotline of a book I'd read years earlier, same for a show or movie and now I can't even remember if I've seen something I watched the day before, never mind years earlier. :(

I feel like I can't trust myself anymore. I also feel like this is getting on my husband's nerves as well as my daughter's and I honestly don't know what to do about it except stop talking about anything other than what I'm doing at that moment for fear that I'll be repeating myself again for the umpteenth time that day! :(

Wednesday, November 10, 2010

Nov. 10, 2010

I haven't posted because it's the same old crap every day.

But one piece of super good news today....

I FINALLY HAVE A FAMILY DOCTOR!!!!!!!!!

Hallelujah and the Angels rejoiced!

It took 6 years and health connect but I have one. 
And from the place I never thought to call.
The french health services in my city.
They only do business in french, and since I speak french...

Now I have to figure out how to get some income in until at least the appointment which is December 14th.

I've left another message with my neurologist letting him know I finally have a family doctor and he can forward my file to him. I really need that disability paper from him though and very soon. Rent is coming due on the 1st. 

Friday, November 5, 2010

Nov 4, 2010

Another day.
I'm tired
I'm fed up
I don't want to fight all the time just to get what I need
Je suis écoeurer au bout!

The usual crap, same shit, different day.

Tomorrow I will call the clinic to get an appointment.
Today I was too late when I thought of it.

Went to pick up meds at the pharmacy 2 blocks away.
Came home with my back and hips begging me to stop.

I hope things will improve soon but the future doesn't look that bright right now.

Thursday, November 4, 2010

November 4, 2010

Another day.
I'm tired
I'm fed up
I don't want to fight all the time just to get what I need
Je suis écoeurer au bout!

The usual crap, same shit, different day.


Tomorrow I will call the clinic to get an appointment.
Today I was too late when I thought of it.


Went to pick up meds at the pharmacy 2 blocks away.
Came home with my back and hips begging me to stop.


I hope things will improve soon but the future doesn't look that bright right now.

Wednesday, November 3, 2010

Nov 3, 2010

Musings

Some days i wonder what I was in a previous life. Why is it that it always has to be so bad, that I have to struggle constantly to get anything.  I must have been very bad or something. I just don't get it. Why?

I know everyone has their burdens to bear.
I just feel like they've been piled on a tad thickly in my case.
It never ends.
There's always something or other that happens that sets me back 5 steps when I only managed to go forward by 3. I feel like I'm running a losing race and I don't even understand why. Why me?
It feels like a very evil joke at times. 
Something good is dangled in front of me, just out of reach.
I work hard, do my best and I still fail.
The proverbial brass ring gets yanked out of my hand before I even have a chance to close my fingers around it.
I know there are others out there who say the same thing.
I'm just tired...

Nov 1 & 2, 2010

I'm tired of the constant pain. I get up in pain, I try and keep up in pain and I go to bed in pain. Makes it hard to think at times. I also sleep like  crap these days. Nightmares of epic proportions. Being chased by a monster wielding a flame sword, get hit with it and wake up feeling like my skin is on fire.

Other nightmares too, always with pain and when I wake up, there it is. Why bother getting up

I went to see my neurologist today. My EI ran out last Monday and I still don't have a job, and anyway, not like I could keep up with a full time job. I wash dishes and I'm done for the next 3 hours.. woot! Everything exhausts me. I know a lot of the exhaustion is because I"m not sleeping well. I've started taking gravol to help me fall asleep. It sort of works, but it also leaves me feeling fuzzy when I do wake up and that's with a headache as well. Gotta love that. Anyway, he is writing a letter for EI to advise them I'm not in shape to work and that I am in the process of applying for ODSP. Which I have to do asafreakingp and I need a family doc for that. It's reached a point where I can't afford to wait for a doc that's nearby anymore. So later today (nov 3) I'm calling and hope to set an appointment asap.

He told me that it should go well. He has other patients who only have diabetes and they are on ODSP. He figures with what I have, the biggies, COPD, IBS, diabetes and fibro, I should be more than qualified to get in. And from what he's told me, it sounds like it would really be a good thing since I wouldn't have to pay for meds anymore and I'd receive assistive devices so I don't end up falling flat on my face. And I would also be able to take on a bit of work here and there when I feel able to which again would be nice. I don't see myself sitting day in day out on the couch for the rest of my life.... .which right now looks pretty bleak.

I remember thinking to myself last year that I would love nothing more than to have time to do crochet and knit. Guess that's what's happening now, but wow, at what price though. Not sure if that's a good trade off...

At this point, I'm just thankful that he's willing to help me get what I need.

I just wish my husband was more able bodied to help with stuff around the apartment. But with his chronic kidney stones he's pretty well in pain 24/7 as well, so not gonna happen. :(

Sunday, October 31, 2010

October 30, 2010

Somewhere along the way I lost the 29th.

I slept horribly last night. Dreams, nightmares, pain kept waking me up.
Stupid bladder was not helping either.
Hubby suggested I take Gravol to get me to at least fall asleep decently.

I keep getting jabs of pain in my thigh same as my upper arm, like I'm getting a shot. Sharp pain that dulls down to burning. Would be ok if it was once. but repeatedly, not fun.

I'm trying to keep up with dishes, cooking simple meals, picking up what I can when I go from 1 room to the other. I figure since I"m getting up to do something, may as well bring something with me that belongs in the other room I'm heading for and vise versa.

Trying the gravol route again tonight. Took 6, let's see if it works.

Thursday, October 28, 2010

October 28, 2010

Yep, I paid for yesterday in pain!

I woke up with my hands hurting like they were stuck in a wasp nest.
I kept waking up during the night. My husband who was up commented on my having multiple nightmares through the night and it seemed that pain was involved in all of them. I don't remember... as usual.

Wednesday, October 27, 2010

October 27, 2010

Great news that came from my daughter coming over for a visit yesterday. The last time i had seen her was before I was diagnosed, so roughly 8 months ago.

She noticed that things around the apartment weren't as they usually are on previous visits.

I knew she would be checking on things when she came, she always worries about us. (husband also has chronic kidney stones and high bp and tries to self manage chronic pain from the kidneys) I asked if she'd mind coming with me to get groceries. So off we went. She noticed how quickly I slowed down just walking the 2 blocks to the transit bus stop, then she noticed I had gotten us on the wrong bus at the switch over (I only noticed 2 blocks later, panicked and got off the bus) She got off at the next stop and ran back to find me quite upset and terrified. I was so sure we had boarded the right bus! So back we go to the switch over point and finally got on the right bus. At the grocery store I hung on to the basket, my legs hurt quite badly by then. My back was beginning to give me the "if you take one more step, we'll give you such a twinge" threat. She ended up taking the list from my hands, and I just followed her around. She was really sweet to check with me on each item as she knows we both have dietary restrictions, diabetes and IBS for me, and kidney stones, high bp and IBS for husband). She learned a few things along they way. Like, don't trust what you bought last month to still be safe this month as she read and compared labels on cans and boxes. When we finally pulled up to the cashier, she started unloading the cart, I squeezed by and started loading the cotton grocery bags I use and she finished helping me out as the last bit was rung through. I paid, she manoeuvred the shopping cart out the door while I called for a cab.
While we waited for the cab, she checked the time and gasped. We'd been doing groceries for 3 hours! and we weren't home yet. That boggled her mind. She didn't realise just how long it took me to get groceries done. She kept thinking, dash to the store, grab what you need, dash back home, done... an hour tops?.... She finally understood why I'm so exhausted just getting groceries.

When we got back home, she helped me get everything put away. She noticed that the vegetable crisper drawers were in need of a bath as did the rest of the bottom shelves. The pain I experience when I kneel on a floor, I can't even describe. It shoots up and down, my knees turn into bits of stone floating in a lake of lava. I just avoid anything that requires my kneeling, let's put it that way. So my darling daughter washed out the bottom of the fridge. I helped by sorting what went back in and what went to recycling. I was so happy when it was all done. It had really bothered me but the thought of the pain that would be caused by kneeling made me just ignore the fridge hoping it would just go away.

Tuesday, October 26, 2010

October 25, 2010

Today was scary.

I was at the mall and was supposed to meet my best friend at the fountain and head to the restaurant for lunch. Instead of meeting her at the fountain, I just went straight to the restaurant and then sat there waiting and worrying why she wasn't there. 15 minutes went by, 15 minutes where my anxiety grew to some very uncomfortable levels. I took out my cell phone to call and then it hit me. We were supposed to meet at the fountain! I grabbed my stuff and rushed out hoping she wasn't as frantic as I was. We met halfway, she was just as worried as I was! But we were both safe.

I've never had this happen to me before. I completely forgot we were not meeting at the restaurant! And the panic attack that followed, that was scary too, my heart was racing, my hearing was overly acute and my nerves were on edge. As I walked by a bookstore, someone dropped a book inside. The sound of the book hitting the floor made me jump out of my skin. No one else around me reacted to the sound at all, like it hadn't even happened!
Thankfully, we headed over for our lunch date and had a great time. Next time I'm bringing a pen and writing the location on my hand. That way, I'll be sure to not forget!

She gave me a lift downtown on her way to her appointment. So I could do a bunch of errands all around that area. I had 1 hour and a half to get it all done. But I paid for it the rest of the day. My back has been screaming in pain since this afternoon. My hips, knees and feet are not happy and just for the heck of it, my right shoulder doesn't want to move, period.... Oh and that started today as well which means deluge for the next 5 days and dregs for the next 4 Sheesh! :( it's like I'm a teenager again *9(&&^

I started taking Ibuprofen and Tylenol with codeine to try and offset the headaches I'm waking up with. It's somewhat working but it's creating a problem with the IBS. So now I have to up the dose on those too! It's like a neverending fracking circle! I've been spasming as well the last few days. When I go to bed, it feels like the muscles in my arms, hands and shoulders don't want to stop moving, feels like mini ticking which drives me nuts and doesn't help me sleep in the least.

Ok, enough whining, time to try and get some sleep.

Saturday, October 23, 2010

October 23, 2010

Saturday already come and gone.
Wish the pain had done the same.

I didn't go and get milk, I didn't go get groceries, I stayed home hoping I'd feel well enough to have a decent day. Got the dirty clothes together to do laundry but someone was using the laundry room, so tomorrow it will have to be unless someone beats me to the laundry room.

I'll give getting milk another try in the morning. I woke up this morning with my hands having tremors. I've been having tremors all day actually. They started last night as I went to bed. I was laying on my side and could feel something moving and realised it was my arm drapped over the pillow that was shaking ever so slightly. Made my shoulders and neck tense up.

Took extra strength tylenol and ibuprofen for the headache. Didn't do much good.  I guess that's what been at the root of the headache I keep waking up to.

I've also got some swelling on my face, The cheek below my left eye feels thick and it hurts when I touch it. So does my left upper arm. Just below the shoulder joint is an area that feels thick and hard, then as I slip my fingers towards my elbow, there's a trench and that hurts like the bejeebers, then back up the other side to the elbow. That section is also painful to the touch. Down my thighs is the same problem and the same for my shins. Although for my shins the rubble there is from being kicked with work boots as a child. Bone never grew right over those spots and it's left me with shins that feel like cobblestones.

My upper back has been nagging me all day. I had to stop gathering the laundry for a while because my lower back decided it didn't want to bend anymore and my hips agreed. Don't you just love it when your body rebels when you're trying to do something and there's diddly you can do to stop it.

Friday, October 22, 2010

October 22, 2010

Yesterday, my hips and knees refused to work as they should. Standing up was painful and walking felt like I was using 2x4s instead of my legs. Feet felt thick as well although there was no swelling and still have it today with the added sharp pain where the toes join the foot.

Today, I woke up with a headache and again, feet, hips and knees are at war with the rest of me. My neck and shoulders have jumped sides and joined the rest of the rebels. I'm also feeling like something bad is going to happen although I don't know what. Just that impending doom may come. I have to be careful, these impending doom feelings have always had an accident involving me as a rule.

I had planned on going out for groceries, but I think I'll just stay home today. It's also cold out, 11C. I know, that doesn't sound that cold but it's also windy. 2 things that don't help me one bit.

I wanted to stop by Grand & Toy to get some patterns (knit & crochet) printed out that I need. The memory stick is loaded, so next time I go out I can take it with me. Just won't be today.

I don't feel very safe anymore when I go out alone. What if I fall, what if I'm hit with pain so bad I can't move or pull the bundle buggy up the bus steps. I will have to go to the corner store for milk today but I'm waiting until my husband is awake before I go. That's a 4 block round trip, should be doable...

I wish this insane dry mouth would go away. It gets so bad I can barely speak because my tongue is sticking to the roof of my mouth. Drinking water relieves it for a few minutes and then it's back full force again. Same goes if I suck on a lozenge.

I hate this... all of it! :(

Wednesday, October 20, 2010

October 21, 2010

Knitting with a tic going off in your eye every few minutes makes it very difficult to keep my spot in the pattern. This Eureka moment finally hit me when I'd finished doing the last 4 rows I'd completed.

Random thoughts....

I really get angry when people's reactions to finding out I have fibro are dismissive.

One lady who watched me struggling to get my bundle buggy on to the transit bus asked me what was wrong with me. I answered I have fibromyalgia and she looked like she couldn't get away from me fast enough.

Another response that really burns my buns is this one "But you don't look sick"

Or another "Can't you just ignore the pain since it's not real?"

Or, 'Shake it off, It's all in your head anyway"

I wish there was more fact about fibro instead of all the fiction floating around. I guess it all starts with one person at a time, but geez, does it have to be at my expense????

I don't mind talking with someone who is interested in learning the truth about fibro but those who have their minds made up before I even start, I'd rather walk away from.

I don't need pity, I need understanding and acceptance. I'm not a freaking leper! and you see, even I say unfeeling things when I try and express my feelings. Lepers deserve my, our respect just as much as any other human being in this world.

Better yet, I need help, the apartment is falling apart and I can't keep up anymore. I've never been the greatest at housework but this is getting ridiculous and downright embarassing :(

October 20, 2010

I forgot to add TMJ to the long list. It's added now!

Today I was reminded of it since my jaw started hurting tonight.
With each chew my jaw emits a loud popping sound from both sides. Not fun in a quiet
room believe me :P Sometimes it flares up and it hurts... a lot.

And with the fibro, it means it's hurting that much more. Ice pak will have to be my friend when  I go to bed. Doesn't seem to make any difference what else I do about it. Painkillers are useless or barely take the edge off.

June 2, 2010
Today was a not so good day. Every time I wanted to stand up I'd fall backwards on the first try and then finally stand on the 2nd or 3rd try if I went at it slowly. The muscles of my thighs were not cooperating at all.

I had planned on going to get a few groceries this afternoon. That plan got scrapped when I couldn't trust my legs to work when I needed them. Maybe tomorrow will be better.

Going to get some knitting done for a while. Keeps me from thinking about stuff too much especially when I'm hurting and I don't know why I'm hurting. And I'm going to strap an ice pak to my jaw while I'm at it.

My husband thought it was quite funny to see me cooking with an icepak strapped to my jaw back in June. So funny that he took a photo....

Medication I take

 I take medication for the various diseases I suffer from on a daily basis.

Diabetes:
  • inject 60 units of Humulin N insulin at bedtime
  • 1000 miligrams of  Metformin at bedtime & at breakfast (4 pills total)

IBS:
  • 3 gelcaps of a generic Stool softener
  • 1 tbsp of metamucil powder in an 8 oz glass of water in the morning
  • 1 tsp of metamucil powder in an 8 oz glass of water before bed
Fibromyalgia & Neuropathy
  • 125 to 150 mg of amitriptylene before bedtime (12 to 15 10 mg tablets) *depends on how bad the pain is*

1 baby aspirin to keep the blood moving

2 to 4 Tums before bed since the pile of pills gives my stomach problems.

So on a good night I'm taking 18 pills plus 2 tums chewables ugh

Not bad for someone who's hated taking pills throughout my life.
I still hate pills, still hate taking them but I can't live with the alternative consequences if I don't take them. Pain will not master me, I will master pain and whatever else comes along.

Levels of Pain

It's hard to describe fibro pain to someone who's never experienced it.
The 7 kinds of fibro pain as described in this article are about as close as one could get to explaining what I go through.

Types of Fibromyalgia Pain

The first 3 types of fibromyalgia pain are medically defined: 

1. Hyperalgesia - Our brains appear to take normal pain signals and "turn up the volume,"    making them more severe than they would normally be. 

2. Allodynia - your skin hurts to the touch, and when mild pressure from clothing or gentle massage causes pain. A lot of people describe allodynia as similar to a bad sunburn and I agree.
It comes in 3 forms:

A) Tactile, which is pain from touch or gentle pressure. My husband has learned to give me deep tissue massages. Those after the initial gouging a hole in the wall behind me actually help a lot, especially for my feet and my back. He'll literally rake his fingernails down my back and it's a mix between pain and pleasure. He keeps doing this for a few minutes and the pain goes away and my back feels like it's floating. I know, weird. I guess the amount of pressure exerted gets past the gentle touch/pressure triggers and that's why it works for me.

B) Mechanical, which is from something moving across your skin like a shirt, pants or a breeze. For me, putting on a shirt will feel like someone is using heavy grit sandpaper on my skin.

C) Thermal, which is pain from heat or cold that's not severe enough to damage tissues

3. Painful Paresthesia - is odd nerve sensations that can feel like crawling, tingling, burning, itching or numbness. Sometimes, these sensations can be painful. It is also associated with peripheral neuropathy, which I have. I find this one disconcerting at times, especially when I get the feeling like a mouse is quickly running up my back... under the skin.

The next 4 types are the writer's own creation, which is obvious by their names. Don't use these terms in a doctor's office (unless you want to be seen as crazy), but these labels may help you get to know your body's quirks, triggers, patterns, etc.: (I've used these to describe the pain with my neurologist and he completely understood what I meant) 

1. Knife in the Voodoo Doll - for me this is a sharp stabbing pain that can hit anywhere. I'd compare it to a drive by shooting. You never know when it's going to happen or where it's going to hit.  I also get the icepick in the big toe pain. Nothing says I love you like a knee jerk reaction just as your husband is leaning in for a kiss and the icepick hits.

2. Randomly Roving Pain - I hate this one since I'll try and get rid of it or stop whatever I'm doing that's causing it and it just goes somewhere else totally unrelated to what I just did or didn't do. 

3. Sparkler Burns - Ever drop ash from a cigarette on your arm? or have a drop of hot wax hit your hand, that's the same feeling but 100 times intensified. I also get that feeling over all of my body. 

One of the most uncomfortable and scary things I've had happen since being diagnosed with fibro. I woke up from a nightmare where the monster who was chasing me with a giant sword made from flames caught up to me when I tripped in the dream and hit me with the fire sword. I woke up with my entire body feeling like it was on fire. The feeling didn't pass for quite a while and there was nothing I could do since I really wasn't on fire. I tried in front of a fan, it relieved a bit of it but it was simply waiting for it to pass that finally worked. 

4. Rattled Nerves - I associate this one with a feeling of impending doom that I get. Everything around me just sets off alarms and there's nothing apparent that would cause the 5 alarm response.


Oct 19, 2010

Not too much pain today.
Soft palate pain seems to be passing. No clue why it was there to begin with.

Stiff as hell when I woke up. Finally started being able to move decently after an hour give or take.

Monday, October 18, 2010

side note to October 18, 2010

The soft palate (roof of my mouth) has been feeling like it's been scalded with a hot liquid for the past 2 days now. I haven't eaten or drank anything that was hot enough to scald.

Wonder if this is another one of the hypersensitivities fibro visits on me these days....

October 18, 2010

My intention is to keep a journal of symptoms, flare ups, weird stuff, anything that affects my fibro and what meds or treatments work and what doesn't.

Today, my best friend picked me up and we went downtown. We couldn't have lunch as she was going back home asap since her wee pup had to go to the vets.

I woke up stiff, feeling tired. Woke up twice that I remember to go pee. My fault since I went to bed at 1 am and wanted to get up at 8 to shower and get a few things done before going.

The shower did not feel good. The water temp kept fluctuating between freezing and scalding. And the water hitting my skin hurt as did the puff I use to scrub off the reams of dead skin that seems to come off me like snow.

Last night I took my meds and when I injected my insulin I had to double check that I had actually stabbed myself with the needle since I felt absolutely nothing.

After my friend dropped me off downtown I went to the Dollar store, the deli and the discount clearance center. Picked up a few things there that were cheap. Headed over to get the bus to go to the grocery store and realised I didn't have my shopping list. It was still sitting on the desk! and I couldn't remember what was on it so I came home. I'll have to go tomorrow. I did pick up supper at the persian restaurant since both meals cost a whopping 10$ and it's very tasty and filling. Rice with mung beans, roasted eggplant, chicken and mushrooms in a yogurt sauce and a side salad.

Painwise today has been relatively good. Twinges here and there, a few stabs in my shoulders and one big jab in the back of my head. Feet feel ok and hands aren't stiff for once.

Let's see what tomorrow brings.

On the homefront my darling husband is suffering from kidney pain and also developed a tooth abcess today. Let's hope that goes away quickly. There's no money for a dentist with me not working and hubby unable to work because of debilitating kidney pain. Finding full time work I can do is getting more and more difficult as I find that getting through a regular day at home can be very difficult at times.

I hope the stone passes quickly as well and maybe he can get a few days free of pain. I won't hold my breath on that though since the pain free days are rare around here.

I worry about him, as much as he worries about me. We make a fine pair. Both of us in pain for different reasons.

Sunday, October 17, 2010

The short list doctors use to diagnose fibro

This is an excerpt from the National Fibromyalgia Association in the US.

Tender Points Illustration Front and BackDiagnosis

Currently there are no laboratory tests available for diagnosing fibromyalgia. Doctors must rely on patient histories, self-reported symptoms, a physical examination and an accurate manual tender point examination. This exam is based on the standardized American College of Rheumatology (ACR) criteria. Proper implementation of the exam determines the presence of multiple tender points at characteristic locations.

It is estimated that it takes an average of five years for an FM patient to get an accurate diagnosis. Many doctors are still not adequately informed or educated about FM. Laboratory tests often prove negative and many FM symptoms overlap with those of other conditions, thus leading to extensive investigative costs and frustration for both the doctor and patient. Another essential point that must be considered is that the presence of other diseases, such as rheumatoid arthritis or lupus, does not rule out an FM diagnosis. Fibromyalgia is not a diagnosis of exclusion and must be diagnosed by its own characteristic features.

To receive a diagnosis of FM, the patient must meet the following diagnostic criteria:
  • Widespread pain in all four quadrants of the body for a minimum duration of three months
  • Tenderness or pain in at least 11 of the 18 specified tender points when pressure is applied

Red thick scaly rash photos


These are the only photos of the rash that erupted on several occasions earlier this year and haven't resurfaced since July 11th, 2010.
I had done nothing different on any of the occasions it appeared. Same habits, foods, clothing, location.
My left arm, July 2010
Left arm on July 11th, 2010

Right arm by the wrist July 11, 2010

Right arm July 9, 2010

Right arm July 9, 2010

Left arm July 11, 2010

Left arm July 11, 2010

Right arm July 11, 2010

Fibromyalgia Symptoms Checklist

Some of the following are noted as overlapping conditions, which means they commonly occur with fibromyalgia but actually are conditions that need to be diagnosed and treated separately.
People with fibromyalgia can have any combination of the following symptoms, and to varying degrees of severity.

I've highlighted the symptoms I have and where noted how long I've had these. I was amazed at how many symptoms there are. No wonder doctors have so much trouble figuring out if it's fibro or something else.

FIBROMYALGIA SYMPTOMS CHECKLIST

General Fibromyalgia Symptoms

  • Delayed reactions to physical exertion or stressful events my grandmother was also like this and people always commented on how cool I stayed when things go bad
  • Other family members with fibromyalgia (genetic predisposition) my maternal grandmother, my sister, my dad
  • Sweats I've had these for a few years now but the worst is this year. I keep a fan aimed at me wherever I sit otherwise I have rivers pouring off my face and body.I have to wear a bandanna when I cook or our food would be flavored with sweat.
  • Unexplained weight gain or loss I've had both over the years.
  • Cravings for carbohydrate and chocolate You mean that's not normal??
  • Headaches & migraines Thankfully, the amitriptylene I'm on keeps most of the migraines at bay. I still get that weird holy light feeling when one is starting though.
  • Vision changes, including rapidly worsening vision. In the past 3 years I've had to purchase reading glasses to wear in front of my regular glasses since if I try and walk with my reading glasses on (which mimics glasses with built in reading) I fall. So I stick with wearing 2 pairs when I need to read, and 1 pair for walking. I need to see the ground properly since I don't feel it very well. I also have some days that my eyes don't really want to focus on anything. Everything I look at including while I'm wearing my reading glasses has a blurred edge to it, like a shadow.

Muscle & Tissue-Related Fibromyalgia Symptoms

  • Pain that ranges from mild to severe, and may move around the body (See The 7 Types of Fibromyalgia Pain) Oh hell, yes!
  • Morning stiffness - Every morning I have to take it slowly otherwise I may end up flat on my nose on the ground or I may end up dropping my cup because my hands feel like stumps.
  • Muscle twitches - if it's not an eyelid twitching, it's my little finger dancing on it's own or it's my toes doing a tango or it's my neck and upper shoulders boxing away or a drumstick beating on the back of my head.
  • Diffuse swelling - ankles, feet just behind the toes, hands, wrists since I became an adult
  • Fibrocystic (lumpy, tender) breasts (as an overlapping condition) since I grew breasts at 10

Sinus & Allergy-Related Fibromyalgia Symptoms

  • Allergies - fish I get hives, corn pollen - my nose starts running non stop and I can't stop sneezing and eyes swell, unexplained thick scaly rashes that appear and disappear on my wrists and forearms - started in 2010, severe allergy to sulpha based drugs, severe allergy to active ingredient of most allergy medications, active ingredient in powder flea and tick for farm animals
  • Post nasal drip - Off and on, it usually hits my vocal chords which makes me half choke and I have to keep clearing my throat until it gets off my vocal chords.
  • Runny nose - Off and on, with or without a cold
  • Mold & yeast sensitivity - definitely, every time I went into the hay mow as a child and later an adult and moved bales of hay around I'd start sneezing, nose running, eyes burning and had to get out
  • Shortness of breath - I was diagnosed with COPD in 2005 but have always had problems even as a child with my breathing. Strong winds make me choke as does heavy snow falling (storm) I developed chronic bronchitis as a child and each year would end up getting pneumonia as well
  • Earaches & itchy ears All the time!
  • Ringing ears (tinitis) - In the past 2 years I've gone from having the high pitched whine to hearing a radio that's tuned just out of range. I hear the music and voices but can't hear definite words. The stations vary from different types of music to talk show types of sound.Sometimes I hear the sound in my head and other times it's my right ear. Previous to that I'd have the high pitched whine off and on but mostly on. I learned to ignore it on most days.
  • Thick secretions not sure from where these are suppose to emanate.... but if it's vaginal, yes indeed.

Sleep-Related Fibromyalgia Symptoms

  • Light and/or broken sleep pattern with unrefreshing sleep - This has grown worse in the past year. As a child I had very light sleep but I think that was more because I never knew when the kitchen door would smash shut in the wee hours of the morning and it was my Dad looking for one of us to beat on.
  • Fatigue - waking up tired, like I just crawled into bed. Or halfway through the morning running out of steam or same for the afternoon. Actually have to fight falling asleep. Simply bringing out the recycling or trash finds me absolutely sapped of energy.
  • Sleep starts (falling sensations) - Ugh, I hate these. I've had these for as long as I can remember
  • Twitchy muscles at night - if leg muscles count, then it's a yes. I also get twitches in my fingers, hands, face.
  • Teeth grinding (bruxism)- My mother would get on my case as a child because I ground my teeth all the time. I still do as an adult, or at least grind what's left of my teeth.

Reproductive Fibromyalgia Symptoms

  • Menstrual problems - since I started menses at 14
  • PMS (as an overlapping condition)- yes, my whole life. Before I finally got some relief from this when I started taking amitriptylene, my husband had nicknamed me angelzilla since I would mutate into this angry, crying, painful facsimile of my normal self.
  • Loss of libido - sadly yes for the past 3 years or so.
  • Impotence lucky for me I don't get this one LOL

Abdominal & Digestive Fibromyalgia Symptoms

  • Bloating & nausea - since childhood
  • Abdominal cramps -since childhood
  • Pelvic pain - during sex
  • Irritable bowel syndrome (as an overlapping condition) yes for years and years.
  • Urinary frequency - that varies depending on how much liquid I've had to drink. But I have to go to the bathroom at least once every night sometimes more often. As a child/teenager I was embarrassingly incontinent and suffered from frequent bladder/kidney infections. We had a long driveway and many times I'd sneak into the house and go change because I had been unable to hold my urine after a 45 minute bus ride. I was also a bed-wetter as was my Dad. The bed-wetting finally stopped around the time I turned 15.

Cognitive/Neurological Fibromyalgia Symptoms

  • Difficulty speaking known words, other language impairments (dysphasia) - yes, has grown progressively worse in the past 5 or 6 years. I just call it stuttering since there's no other way I can explain that my jaw locks up and no sound comes out until I can find the word or figure out how to pronounce it. Somewhat embarrassing in a roomful of people you don't know.
  • Directional disorientation - inside a building, definitely. Outside I'm usually ok as I go by landmarks. I can visualise a map I've previously studied and overlay it on what I'm seeing on the street.
  • Poor balance and coordination - repeatedly scabby knees as a child, sprains, falls, broken fingers, foot, leg, bruises from simply bumping into something. Today I can trip over my own feet without trying too hard, also trip over sidewalk cracks.
  • Paresthesias in the upper limbs (tingling or burning sensations) - for most of my adult life
  • Loss of ability to distinguish some shades of colors - my husband says I've had this for a while and I only recently discovered that he was right. I could not tell the difference between 2 shades of the same color. I confuse moss green with grey.
  • Short-term memory impairment - I make lists otherwise I forget what I needed. Will also forget what I was doing just walking from the living room to the kitchen and stand there looking like an idiot while I retrace the last few minutes in my mind and even then I don't always remember what it was. My husband has taken to naming different things to help me remember. I've even seen discussing with my husband what we were going to eat for supper, pasta with a cream sauce and I go in the kitchen and make pasta with a tomato sauce.... 0_o
  • Confusion - when someone is explaining something, I don't always get it and just get more and more confused. I usually have to move away, give my head a chance to think through and sometimes I get it. This has been a somewhat recent development.
  • Trouble concentrating - yes, Have been having problems with this for the past 5 years at least. If I persist in continuing what I'm doing, I start falling asleep.
  • Staring into space before brain "kicks in" - ugh, yes more often than I care to remember.
  • Inability to recognize familiar surroundings - thankfully not this one.

Sensory Fibromyalgia Symptoms

  • Sensitivity to odours - some odours have actually triggered asthma-like attacks.
  • Sensitivity to pressure changes, temperature & humidity - I get headaches when there's a change in the barometer. I have difficulty breathing when the humidity is high.
  • Sensitivity to light- some lights will trigger migraines ie: strobes, or riding in a car driving by a row of trees, the sun flashing in and out triggers migraines as well.
  • Sensitivity to noise - When there is a lot of noise and people in a room, I have difficulty finding my way out and cannot understand any words if someone speaks to me in the room
  • Night driving difficulty - oncoming car lights look like starbursts
  • Sensory overload - I avoid large crowded areas as much as possible. The noise and the crush of people around me make things very confusing and I tend to panic inside which only makes things worse.
  • Adding Sensitivity to sunlight. I feel like my skin is on fire even standing in the sunlight for only a few minutes. Using an umbrella to keep the sun off my skin helps a lot. I've had this symptom since 1995 after the surgery on my hand for the single cell tumour.

Emotional Fibromyalgia Symptoms

  • Panic attacks- I used to have these often. In the past 10 years I haven't had one but I think this is mostly because the cause of the panic attacks (first husband's abuse) has been removed from my life.
  • Depression (as an overlapping condition)- I don't feel like I'm depressed, but that may be because of the amitriptylene since my neurologist insists that with all the symptoms I have I should be depressed.
  • Tendency to cry easily - gawd yes, have had this for years (not sure if it's because of recent events in the past year ie: my sister dying). Since taking amitriptylene I don't cry as often, but there are days where I still cry much too easily.
  • Free-floating anxiety (not associated with situation or object) - yes, I get fierce bouts of heartburn when this symptom kicks in. I don't know what's causing it so difficult to resolve. I take Tums and it helps to at least reduce the amount of acid in my stomach.
  • Mood swings - yes, angelzilla, which has been mostly laid to rest since taking amitriptylene. The rest of my moods can go from very happy to very sad within minutes. Anyone sitting next to me in that minute would get emotional whiplash hehe.
  • Unaccountable irritability - same for this one. I would sit on the couch and just bawl because I couldn't figure out why I was so angry over nothing before the amitriptylene.

Heart-Related Fibromyalgia Symptoms

  • Mitral valve prolapse (as an overlapping condition)thank goodness no
  • Rapid, fluttery, irregular heartbeat - have had this symptom for the past couple of years now. I always get my blood pressure checked and also go in for the EEG and they are always normal. I attribute this to nerves since it usually hits me when I'm  worried  about something and 99% of the time, this hits me at night. It wakes me up. No irregular heart beat though.
  • Pain that mimics heart attack, frequently from costochondritis (as an overlapping condition) I've had this since I was a teenager.

Skin, Hair & Nail-Related Fibromyalgia Symptoms

  • Pronounced nail ridges - since childhood my nails literally snap off.
  • Nails that curve under - since childhood
  • Mottled skin - since childhood, back, shoulders, face, arms
  • Bruising or scaring easily - since childhood
  • Hair loss (temporary)? - permanent for me since 1995, what's left is very thin and I still loose it by the handful every time I brush my hair. Although it hasn't grown any thinner so I must be growing some of it back.
  • Tissue overgrowth (non-cancerous tumors called lipomas, ingrown hairs, heavy and splitting cuticles, adhesions) - Any and all of the above over the years. I also have these nodules growing on my skin that are rough and scaly. I have them on my legs and arms. I also have ingrown hairs that if not taken dare of immediately turn into large infected sores. A trichilemmal cyst growing on my scalp. And lastly I've been growing a crop of colorless beauty marks on my face. So far I have 5 of those. Whoever called these beauty marks should have a whole raft of them growing on their face and see how much fun they are.

Miscellaneous Fibromyalgia Symptoms

  • Hemorrhoids- ugh, yes since childhood
  • Nose bleeds - as a child, I had a lot of nosebleeds.
Sources:

And to that list, I add
Carpal Tunnel syndrome - officially diagnosed in 1998. but already had it since I was a teenager
COPD Congestive Obstructive Pulmonary Disease - officially diagnosed in 2005 but had chronic bronchitis since childhood
Diabetes - (insulin dependant) since 2003
TMJ Temporomandibular joint disorder - since childhood. Flares up on occasion. The worst flareup was earlier this year where I had to get a prescription to reduce the swelling. Everytime I chew, my jaw makes a loud popping sound. Very embarrassing in a quiet room.

Saturday, October 16, 2010

The Aftermath

In early 2000 I met someone through an online rpgroup. We started talking about life, ourselves, etc and I finally talked about my family and life and he listened. He made me feel better, something no one else had achieved in forever. We talked every night and our relationship grew with each passing day until a month later he told me he was in love with me. That scared me to no ends. I was already in a relationship that had been dead for the past 8 years if not longer and here I had someone else telling me he loved me. Me? With my level of self esteem, I felt that I did not deserve this, that it was too good to be true.

One thing he did give me was the courage to finally make a decision since I'd been sitting at that particular crossroads for the past 3 years.

Today, 10 years later, I'm living with my soulmate, my dream man and I wouldn't change a thing. I'd be worried I wouldn't meet him if an event was changed in the previous 19 years.

We've been struggling financially between caring for a disabled child and living in a substandard apartment without heat or hot water for 3 years while the court case kept being remanded time after time because the deadbeat landlord kept not showing up and his so called hack of a lawyer kept pleading for extensions. That was finally resolved and we moved out as soon as we could.

We now live in a different city in a small apartment. It's not the Taj Mahal, but it is home for us. My darling husband suffers from chronic kidney stones. He passes them all the time as well as gravel. All this means he's in pain pretty well 24/7. We manage, we take care of each other as best we can.

In 2003 I was diagnosed with diabetes. Kind of expected it since it runs in the family. I'd managed to push it away for a few more years but my being metis didn't help.

I still experience crippling back pain every morning and still roll out of bed but now the pain has spread throughout my body. I wash dishes in boiling hot water in the morning to regain the use of my hands.

I finally saw a neurologist in 2006 who diagnosed me with neuropathy in my feet and lateral neuropathy in my legs and arms. He prescribed amitriptylene and it has done wonders for me. I don't feel like my feet are constantly on fire anymore but I do feel jabs and spasms in my feet and hands.

Every year the amount I take has gone up by 10 to 20 milligrams because I was feeling more and more pain. The kind I call phantom since there is nothing there to cause the pain I'm feeling. I also started experiencing weakness in some muscles, I cannot make a hard fist with my hand without the muscles in my arms spasming. I have problems with sensitive skin, some days I cannot stand anything on my arms or back. Other days I slip on a shirt and it feels like I just put on a shirt made of brillo pads.

So finally this spring I went back to my neurologist and after a thorough examination and answering a lot of questions, he concluded that I exhibit enough symptoms of fibro to now officially have it.

In the middle

My body was determined to keep playing mean tricks on me. In 1985 I hadn't had my period for at least 5 months and suddenly I start bleeding like there's no tomorrow. It frightened me since the blood looked fresh, not like the usual discharge. So I went to the ER to make sure everything was ok. After doing a urine test, blood tests, etc.. the doctor tells me I'm having what's known as a hysterical pregnancy. Great.. So he prescribes pain killers since I'm getting insane cramping. In my head I decide I will not take the pain killers and perform a take over of my brain instead. So the prescription gets tossed, I go home and suffer in silence.

A month later, I'm sitting on the couch with my 3 year old daughter next to me. She lays her head on my belly which still looks pregnant haha and suddenly raises her head and looks at me and says, Mommy, there's a baby in there!... 0_o huh??? She lays her head on my belly again and starts whispering to 'the baby'. I tell her there's no way I'm pregnant but she insists that I have a baby in my tummy. So I make an appointment to see my doctor the following week. I walk into his office and he looks up and says, you're pregnant. I'm looking at him like he's lost his mind and remind him that i had come in a month earlier suffering from a hysterical pregnancy. Since when do those turn into real babies?!

He orders blood drawn and a urine sample. I'm left in the waiting room to hear the test results which have been  requested post haste. After an hour he calls me back in and he says all the tests say it's negative. I agree since of course I was having a hysterical pregnancy! right? So just to make doubly sure, he sends me upstairs to the neonatal unit so they can strap a monitor to my belly. The nurse turns it on, does a few adjustments and there, going like a little drum is another heartbeat syncopated with mine. WTF!!! The nurse picks up the phone and tells my doctor there's a definite second heartbeat. She listens for a few and hangs up. I ask her if it's all done now and she says I have to wait a few minutes so they can record the heartbeat. yaeh, sure... my doctor walks in a few minutes later, comes over and starts listening with his stethoscope over various areas of my belly all the while I'm listening to that wee heartbeat on the monitor. Tears are leaving trails down my cheeks as I'm thinking of what would have happened to this wee heartbeat if I had taken those prescription pain killers. The doctor ordered an ultrasound to be performed asap to determine what stage the baby is in. That was never figured out by the way.

He was born December 27 1985, severely underweight, the bones of his skull undeveloped, nothing to hinge his jaw into, and no way to control his body temperature. I saw him, grey, lifeless, arms flopped on each side as the doctor quickly moved him to a table across the room. Another doctor, my neighbor, had joined him somewhere along the way and he also attended to the baby. He never cried after he was born and it took another event to fill me in on the details. What I didn't learn until 6 years later is that they had to reanimate him twice. He was put in an incubator and whisked away before I actually got to meet him.

We took him home after a week in the hospital. He was not doing well, not feeding well because of the lack of a hinge for his jaw, he was weakening day by day and I felt helpless watching my son slowly leaving us again. I begged the doctor to let me bring him home for the weekend and he finally agreed with the promise that I'd have him back to his office on Monday morning. That weekend, my son spent his time sleeping and eating. I made a soft kangaroo type pouch with shoulder straps that doubled back in front so they could be adjusted and I looked like I was still pregnant when I wore a big sweater over both myself and my son. He only came out of the pouch to eat and get a diaper change. Otherwise he lived in the pouch. It was the closest to a controlled environment I could think of to keep him warm since the farmhouse we lived in was heated with a wood stove that would go out in the wee hours of the morning and the house would grow frigid. Not a good place for a premature baby. But when I brought him back to the doctor on Monday, he was amazed that he had gained 4 ounces! and looked healthier and more relaxed than he'd looked the Friday before. So he gave me the go ahead to bring him home for good, but we had to come in every week to have his head examined, measured for growth or swelling, etc.. I was terrified of his little head getting hit since I could see the veins pulsing in his brain through the translucent skin. I kept a cap on his head all the time for the first few months until the cartilage grew and eventually turned to bones. He finally had a normal newborn's head at 9 months. He didn't sit up on his own until he was 1. The doctor kept telling me this was normal that he would be a tad behind because of his premature birth but that he would catch up and to give him time. By the time he was 2, he could barely stand, could not crawl or walk, and had trouble getting himself to a seated position. By then we had also noticed something was wrong with one of his eyes. After seeing a specialist, we were told he was born with a severe strabismus which because of the newest technology could be fixed quite successfully. He had laser surgery done on both of his eyes since the strabismus was occuring on both. He was alternating eyes so fast that you couldn't really see it. The surgery was quite successful, he still has a strabismus but it's not as severe as it would have been if he'd not had the surgery. A few years ago, he was diagnosed with the same condition I have and in his case, they are fighting each other which means he cannot be treated by wearing lenses for either condition.

Throughout those years, pain was my constant companion. Lower back pain so bad that I had to roll out of bed every morning as actually sitting up in bed would have seen me screaming. So roll out I did. I always felt stiff when I woke up, muscles not wanting to work. I was also plagued by headaches in the early years and eventually I started getting migraines. When I say migraines, I'm talking about debilitating. My husband cared so much about me that he left me for 3 days curled up in a fetal position in our bedroom banging my head against the wall because that felt better than the other pain eating away at my head. He finally took me to ER when his mother who was living with us by then told him he had to do something about the banging. The doctor asked him why he didn't bring me in sooner. By then I had a bruised forehead and sported freezer burn on the left side of my face where I'd been applying ice packs directly without a cloth wrap. He shrugged his shoulders and said I had a high pain tolerance and just sat there. He certainly knew how much pain I could handle....  They gave me a shot of something which to me felt like it did nothing but later was told that it knocked me out for 10 minutes at a time until another wave of the migraine overstepped it. I was still holding an ice pack to my face and rocking with pain on the gurney. After several hours, they finally gave me something else and it knocked me out cold. It was 1994 and that was my first migraine but not the last of many more to come. 

1995 found me finally having surgery for a single cell tumor in my left hand. This was a recurring tumor since I'd already had it removed twice over the past 17 years. So when it came back after the 2nd surgery, I just decided to ignore the bloody thing which apparently was not a danger to my health. Well, time went by, the darn thing kept growing larger with each passing year until it actually started impeding movement in my left hand. So it was surgically removed, the skin was reattached properly to my hand and thank goodness, it never came back. This was also the year that I broke my right leg just above the ankle. I was doing chores by myself as my husband didn't bother to get out of bed that morning, as usual. I had to let the does out of the stalls, chase them into the milking parlour, then after I was done milking them, chase them back out of the parlour and into their pen before I opened the next pen. On the way out to get the second group I had to dodge sideways to stop a doe from running back into the parlour and my right foot hooked into something on the ground and down I went on top of my right foot. I heard a snapping sound and then the pain hit. I saw starts and fuzzy dots like tinker bell floating in front of my eyes. I had to hold on to the pen next to me to keep myself from fainting. Then I saw the does were trying to get back in the parlour so I pushed myself up and used a pitchfork as a crutch to get them back to their pen. On the way by I finally saw what I had hooked my foot into, it was a piece of the large grade grid we used to make pens. One had been knocked to the ground and covered with hay from the does passing over it. I managed to finish milking and headed back to the house to get the kids off to school. My husband finally came downstairs when he heard the bus leaving. I was sitting at the table carefully taking my boot off because my right ankle hurt like an angry nest of wasps. (I had put a plastic bag over the boot since I didn't want to take it off before the kids left for school) I've always had issues with my right ankle in the past. I've stopped counting how many times I've turned or sprained that ankle so I treated this like any other time I'd sprained my ankle. He asked me what happened, so I told him what happened. He shrugged his shoulders and went out to the barn. I finally got my boot off, took a look at my ankle and winced. I was bruising rapidly and the swelling was growing by the second. I hobbled over to the bathroom and got 2 ace bandages out and bandaged my ankle as tightly as I could stand to keep the swelling down. I put my sock back on and my boot and went back out to the barn since there wasn't much I could do for a sprain. I figured after chores were done I  could put my ankle up and put some ice on it. I did and the bruising was climbing up towards my knee. I figured to myself I had given it a really bad sprain and since I'd always been told that sprains hurt more than breaks I figured it was ok. Let's just say I was far from it. A week went by, the swelling started going down again, the bruising was quite the technicolor show and every step I took I could hear a distinct click coming from my ankle. I shrugged it off and kept on working. My mother in law who is disabled had a doctor's appointment the following week. I always took her in since she could not get up the steps, I'd carry her up and bring her wheelchair up after. When I walked in carrying her, the waiting room was empty and it was deathly quiet, you could have heard a pin drop. So my click sounded like  a shotgun every time I took a step. I put my mother in law on a chair, went back out to get her wheelchair and came in just as the doctor came out. I opened up the wheelchair, put her in it and pushed her into the office. The doctor walking in behind me. I excused myself, went back out to wait in the waiting room and hoped my bandage was tight enough to keep the throbbing pain down. 10 minutes went by, the angry wasps are finally going to sleep again and my mother in law comes out. The doctor behind her, looks at me and says I think you need to come in here. So in I went. He came in behind me, closed the door and asked me what was wrong with my ankle. I explained I'd given it a really bad sprain and that it was taking longer to heal because I couldn't stay off of it considering the nature of my work. While we're talking he's got my foot up on the examining table and slowly undoes the laces and takes it off. I turn white but keep a straight face. I pull up the leg of my jeans to my knee since the bruising has crept all the way up there and he whistles. Ok, so it may be a really really bad sprain? I slip my sock off and he starts taking the bandage off slowly and carefully. I think he already that what I've been calling a sprain is actually a break. He gets all the bandages off and then starts on the tape. I had resorted to using medical tape wrapped and criss crossed as a support for my foot to keep it from moving too much. Once the tape is off he starts feeling my ankle and my leg and asks me to lay my leg out straight on the examining table. I carefully move my leg into a stretched out position, the wasps are coming back... he grabs my foot by the ankle and the top of it and gently pulls until he hears a very distinct click sound. He gently lets go and says he wants me to go get x-rays of my leg. So I drive my mother in law home and drive back to the hospital for x-rays. Of course, they show a nice break just above the ankle. The clicking was the bones sliding past each other on the way up and hitting each other on the way down. He put my foot and leg in a walking cast for 10 weeks which by the time the 10 weeks are up has very little left of it around the foot. He said I had to stay off of it for at least a day which never happened. I was also supposed to have someone drive me home, yeah.. like that's going to happen. I drove myself home using my left foot for the gas and brake. My right leg was extended into the passenger's foot well. The next morning I was back out at the barn since my husband had not bothered to even open an eye when the alarm went off. And life went on, albeit at a much slower pace for me but chores still had to be done and animals fed. After a couple of weeks, my husband was sitting at the table when I came back in from the barn one morning. I always came in around 7 to get the kids up and ready for school and this was like any other morning except that he was sitting at the table. I tried to make conversation as if this was a normal morning all the while preparing breakfast, lunches and limping along on my cast. The kids were about to leave for school when he stood up and screamed at me, demanding to know if I expected a fucking medal or what?!! Both kids fled and I closed the door behind them. He threw his coffee cup across the kitchen and it landed hard against his mother's bedroom door. She screamed and he fled out the back door. I went over and told her it was ok, and picked up the broken pieces of the mug. Right up to the bitter end his mother refused to accept that her son was a violent man. Even when she saw the remnants of his outbursts, even when the police came because neighbours had called out of worry for the kids and myself, even when I showed her the bruises on my body, she stood fast in her belief.

That same year I lost hair by the handful. I have very long hair, over 3 feet in length which I usually keep in a braid or two or wound up into a bun and clipped to the back of my head. When braided, each braid would be the thickness  of 3 thumbs put together. Now, just one braid doesn't even reach the thickness of a thumb. It never grew back.


1996 came around and I had dropped a lot of weight to which I attributed to the fact that I was working 16 hour days non stop. The joys of farming ... But one morning while feeding the baby goats, I found a lump in my left breast. I didn't actually go looking for it, I had my arms all the way forward and felt something hard against my left arm. Reached in thinking it was a halls losenge or a pen that was sticking through my shirt but nope, this was in my breast. I broke out in a cold sweat (in march) because I knew what finding a lump meant. I'd already lost my maternal grandmother to cancer and seen 2 of my father's sisters fighting breast cancer as well. Never mind the fact that 5 years later it would strike my sister as well. I finished my chores and headed in. Took a shower, all the while my head is turning and I'm feeling nauseous. I check again while in the shower and sure enough, there's the one, but I also feel 7 more!! I almost fainted at that point, the blood simply drained out of my head and joined my heart and stomach on the floor of the shower. I dressed and told my mother in law i had to go pick up supplies in town. Drove directly to my doctor and thank goodness for small town practices (back then) I walked in the office and just said to the receptionist that I'd found a lump. She put me through within minutes. He examined me, agreed that there were 8 lumps in my left breast but none in the right. The right breast had gravel only. I've always had gravelly breasts, painful and not fun. And thank goodness for small towns again, got me to get a breast x-ray done that morning and the results sent to the surgeon the same day. I was then given an appointment to meet with the surgeon for the next day. I went home and told my mother in law and my husband what had been found. My mother in law asked when the next appointment was, I told her and she asked if I was going alone or was my husband coming along. Since he was sitting in the room when she asked, I thought he would answer. All he said as he was getting up to leave was that he had no time to waste on that and walked out. Thanks a lot dude... Anyway, my sister in law (she married my husband's brother) came with me to the surgeon. He tried to biopsy the lumps several times which hurt like hell btw! with no success. He scheduled me for a lumpectomy the following Monday. During the surgery, he found another tumour growing on my ribs under my breast which he scraped off. In total he removed 7 lumps and the one on my ribs. I didn't realise this until weeks later when I could finally touch my left breast without experiencing new heights in pain and found the original lump was still there! His response, If it grows, come back and see me. yaeh.. sure buddy... he's retired now. Thank goodness. But yes, that last tumour is still there, not growing (knocks loudly on wood) and serves to remind me to do regular breast exams.

As usual pain, and abuse both physical, emotional and by then sexual were my constant companions. Things were not going well on the farm, the animals milk production was dropping off, we were losing animals left right and center from infections and we had no clue why. My husband's rages were getting progressively worse as well. The days where the milking and chores went without a blow up were fast becoming a thing of the past. We invested in some equipment so my husband could work off the farm which helped but wasn't enough to keep up with the crippling mortgage. On more and more mornings I was the only one out at the barn doing the milking and chores, my husband wasn't getting out of bed anymore. He'd given up on everything. In a way, it was ok since it meant I could do the chores and milking in peace and the animals always milked better when he wasn't around. But the other mornings when he did come out were not fun. Most of those I'd end up finishing up the milking by myself after I'd reassembled all the milking equipment he'd throw all over the parlour, and calmed the animals down enough to be milked. All this was causing the farm to spiral deeper and deeper into debt with no respite in the foreseable future since grain prices were rising each season, then a drought caused hay prices to rise higher than ever. Being a fledgling farm, we couldn't weather those rising costs and we eventually lost the farm to the bank in 1999.

By then my husband's rages and destructive behaviour had gradually worsened. The previous 2 years had seen a rise in violent outbursts, which ended up with me getting punched and elbowed so hard in the kidneys that I peed blood for a week. I had contusions, bruises all over from being slammed into walls. And my throat was raw from crying and also having a rubber hose wrapped around it from behind while I grappled with my hands to get some air in. Everything crashed down in 1998 when he tried to first kill me by hitting me with the truck which sent me flying backwards into the 800 litre milk bulk tank, your head and body doesn't stand much of a chance when it first goes through a door and then meets solid stainless steel. I went to the doctor the following day to find out how my husband was doing since he'd called the police telling them he'd killed the bitch and they had taken him to the local hospital for supervised detention.  The doctor asked me how I was doing. I had some cuts from the broken glass, a whopping lump on my forehead (it's now a shallow ditch) from where my head had hit the bulk tank and bruises scattered here and there. I've had worse so this was a normal day for me. The doctor started asking me questions about my husband's outbursts and I started telling him a bit of what was going on. I left a lot out since I kept thinking I was the cause of it. By the time my visit was done, he told me I was suffering from post traumatic syndrome. The years of abuse were taking a toll on my body and my nervous system. I asked him if he had any pills for whatever that was and he said no, and to try and get away as much as I could when my husband had outbursts. He was also going to order a series of tests to be done on my husband since he thought there might be an underlying problem. That part at least had a bit of light at the end of the tunnel.

He followed trying to kill me by trying to kill himself a month later. Just as chores were starting he blew up, by then I'd given up trying to figure out the why of it. He was outside in front of the barn, the tractor was parked but revving by the side. I heard screaming outside and went out to see what the problem was. The sight that met my eyes as I walked out the door just about stopped my heart. I see my husband laying in front of the tractor wheels on the ground, my son is sitting in the driver's seat, the tractor is revved up full, exhaust streaming out and the only thing holding it there is my son's feet on the break and clutch. I scream are you nuts at my husband as I run over to the tractor to grab the keys out of it and shut it down. My son is crying, terrified. What he had been screaming at my son was 'take your foot off the pedals! come on you little bastard, you know you want to!' I could see my son's legs shaking violently because he didn't want to do that. Once I'd shut off the tractor, taken my son out of the driver's seat and put him down telling him to run and hide, my husband was yelling at him that he was a useless piece of shit and that he was better off dead. I felt like jumping on him at that point and just tearing him piece by piece until he stopped screaming obscenities. But instead I tried my best to look calm and walked back into the barn. My daughter was keeping a lookout from the hay mow where her little brother had joined her and she came down saying that her dad was walking down the road towards the lake.He walked as far as the highway and laid down in the middle of the road. When I drove up, he got up and started walking. He tried to walk out in front of a semi. I managed to jump out of the car quickly and push him out of the way just as the police came driving up with sirens blasting. It took 3 of them to subdue him to the ground. He told them to shoot him. He went catatonic and he was transported to the nearest psychiatric hospital for his own protection. He stayed in a psych ward for 10 weeks. He came out claiming he was healed. By then, I was exhausted. I had tried to keep the farm running by myself and had failed. About a week after he came out of the hospital, I hit a low and just refused to come upstairs from the den. I didn't want to see anyone, hear anyone, eat with the family, etc... I would come up at night after everyone else was gone to bed and have some peanut butter sandwiches and even those tasted like cardboard. I didn't know what day of the week it was or even if it was still the same month. I had cut myself off from society and I felt safe down there in my den.

A therapist was coming to our home twice a week to do some training with my son and she noticed I was not around. My son told her what was going on and she spoke to another therapist who came to visit one day. I think if she had approached me any other way, I would have sent her packing. What she did differently is that she asked me from the top of the stairs after introducing herself if I would allow her to come and visit with me.  I told her she could come down if she wanted to but not to expect anything from me. I had reached a state of mind where I didn't really care anymore what happened to me. So down she came and sat on the only chair available since the only other piece of furniture was the sofa bed which I was on. She just sat there and looked at me. She smiled and waited... and waited.... and I finally asked her what she wanted. She kept on smiling and said, whenever you're ready I'm here to listen. She tricked me! I replied that no one wanted to listen to me, that I wasn't worth anyone's time, the whole mess came pouring out. Then I started crying and more mess came out. I laid my life bare to her, I opened my heart and let her look inside. I was afraid of what she'd say. I was convinced I was the root of all evils, that everything my husband had said to me about me in the last 18 years of marriage was right. And since the nurse who had headed my husband's recovery team at the psych ward had told me it was my fault my husband had tried to kill himself and that I enabled him... I had no clue what she meant by that and when I'd asked, she had given me a long convoluted explanation that made no sense at the time. I'm not an idiot, I'm fairly well read, I'm always searching for information about anything and everything and she made no sense. And all the therapist did was nod and kept on smiling and handing me tissues. I think she'd brought her own box since I had been using tp to wipe my nose. When I had finally run out of steam and just sat there hiccuping and waiting for her to tell me he was right, she looked at me, I mean really looked at me and said "None of this is your fault". That blew my mind. That simple answer literally sent me reeling backwards. What did she mean by None of this is your fault!!! I guess my face must have been an open book because she started speaking again and said let me explain.

She then explained that life is made up of crossroads and that when you reach a crossroad, a decision has to be made. Which way will I take, etc... and that I will not be able to move forward in my life until I make a decision. She explained that many people reach a crossroad and get stuck there. They can't or won't make a decision and until they do, their life is on standby. She then told me I had reached one of those crossroads in my life and that before I continued on, I would have to decide which route I would go. That it might take me a while to figure out which way to take, that the answer wasn't always obvious and that there is no time limit on the choosing, but the longer I take the less life I have to live. That to me was one of the best explanations I'd ever been given for how life proceeds. Twelve years have gone by since that conversation, I've never forgotten because this was the conversation that made the biggest impact on my life, on my decisions. It was like a light bulb was turned on in the closet where I was hiding and I finally saw my life and saw that I could do something better with it. Reality has a way to shove it's nose in where it doesn't belong mind you and that decision took another 2 years before I took a step on one of those roads at the crossroad that I had stopped at 2 years before. The end result of this conversation is that I came out of the basement the next day and didn't go back in. That in my mind I had started to make preparations for the day that would come that I would gain my freedom from the abuse. It was also the day I realised I was no longer in love with him and hadn't been for the previous 5 years at least.

My husband's high lasted 5 months until one day all hell broke loose. It was raining, we were heading over to the recycling yard to pick up building supplies and a wiper stopped working. He pulled over and was trying to fix the wiper which ended up snapping off in his hands and that was the straw that broke the camels back so to speak. I just sat in my corner not daring to make eye contact. He got back in the truck, slammed it into first gear and took off like the devil was after us, the whole time screaming at the truck, at me, slamming the brakes on repeatedly which would send me flying against the door, no shoulder belt. That's when I knew that his stay in the psyche ward was only a vacation for the underlying problems he was suffering from and that I would never be safe with him.

I know this all sounds insane, that I should have left. Why I didn't leave... good question.
First, a disabled male child, is not welcome in a woman's shelter.
Second, your 16 year old daugther is not welcome in a woman's shelter if she's not being beaten.
Third, I would have to give up my son to children's aid services if I went to a shelter.
So in sum total, I was not leaving my daughter behind nor was I abandoning my son to CAS. It took another 2 years for the planets to align themselves and all pieces to fall into place for a chance at stopping the insanity.

In 1998 I worked as a chicken catcher. I was in a crew with a dozen or so young men, which was a tad uncomfortable since I could have been mother to most of them. We would go out each night to a different farm where we'd catch the chickens in vast batteries and load them into trucks to be taken to the slaughterhouse for processing. I lasted 3 weeks. I woke up one afternoon with both hands frozen in a clawlike shape. and when I tried to move them, pain would speed it's way up and down my arms and into my hands. The wrists were swollen. I couldn't even hold a glass. I went to ER and the doctor there said it was carpal tunnel. He prescribed pain relievers and something to bring the swelling down. It took 2 months for me to regain the use of my hands with physiotherapy and ultransound treaments and they still gave me problems every winter for the following 4 years. Oh and the total amount I had made for those 3 weeks of hell? 132$

After I recovered from the carpal tunnel enough to be able to type, I went to work as a telemarketer to bring in money for the farm. I was putting in 12 hour shifts as often as I could to at least pay some of the bills that were piling up higher every month. My husband was supposed to be caring for our disabled son. I finally found out what was going on when I received a call from CAS advising me that if things did not change for my son that they would be forced to remove him from home care. Turns out my husband was spending all day playing games on the computer, and my daugther was cooking meals and my son was fending for himself. Since my shifts usually went from 11 am to at least midnight most days, I was going home, eating whatever I could find in the fridge and falling asleep only to get up and go to work again. I quit my job to save my son and told my husband that he had to find work, or retrain, make a career change. He just sat there and asked me what he should do. I asked him what he'd enjoyed doing the most in the past 20 years and he answered trucking. So he went off to trucking school and all looked to be going well.This was one of the few moments in 19 years of marriage where he actually asked me for input and followed it.

He graduated with high marks in his class and it didn't take long for him to land a good driving job with a local flatbed company. When he was on the road, everything was great, when he came home, all hell would break loose. It didn't matter what I did, what I said, it was never good enough. One night he came home directly from a long haul. I would usually pick him up at the yard. He was ranting and raving about one thing and another and I was keeping my distance knowing that he could turn violent at any minute. I caught movement out of the corner of my eye, my son had sneaked his way up the stairs from the basement den and was watching his Dad. My instant of inattention was also not missed by my husband. He darted forward quickly and grabbed the front of my t-shirt. I jerked back in surprise and fear and my shirt ripped off with my bra which he'd also grabbed. In that millisecond I watched my son go nuts. He came screaming out of the hallway and jumped at his father, beating on him with his fists, kicking him and screaming to leave his mom alone. I realised then that I had to do something, sooner than later and started watching for my chance to get out with the least amount of trouble for my children.

The later part of 1999 and early part of 2000 were filled with fear, abuse, self loathing for being a coward. I was contemplating death again. I felt like I had failed everyone, my children, myself. I was getting very little support from anyone when I would bring up marital problems. Everyone knew my husband as this great guy, helpful, generous, undertanding, etc etc etc... I should have had a camera running at home. They would have seen the real deal then not the sham that he put on in public.

The occasion finally presented itself when we moved out of the farm we'd lost to the bank and into an apartment in a small town. The day of the move was horrific, he threw boxes onto the truck and off the truck and into the apartment like they were filled with wood, never mind the china, framed photographs, and other precious breakables. He managed to smash about half of the breakables we owned at the time. Some where irreplaceable mementos from my grandmother and some from his mother. He didn't care. He left the next day for a week long haul and I started unpacking our things. By the end of the week, I had most boxes unpacked and several boxes filled with broken things that couldn't be repaired ready for trash day. Some of the things that were broken that week broke my heart as well, but let's move on. Two weekends went by, he came home, as usual screaming, ranting, raving and I hit bottom. I sat on the couch and quietly told him to get out, leave, go away, it's over.  That was on June 27th. It took 6 hours before he left, during his ranting and raving and throwing things around, I fell asleep. I know that sounds funny but I was exhausted. I'd reached a point where I didn't care what he did anymore, I just wanted him gone.