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whym's Blog


Good News/Bad News

Hey all!

So I FINALLY got offered a job today!  It's lower in pay than my current by a fairly long shot so I'm going to have to pick up some weekend work, but...it's a hell of a lot better than nothing at all.  It's a union role too, which is kind of cool.  It will allow me access to a lot more jobs so by the time the temp position runs out, I shoud be able to find something else decent.  They tell me it will turn into a full time permanent job after the six month contract so I'm eager to see that through.  

The bad news is that I won't be able to get on EP anymore through the work day.  I can access it through my phone but won't be able to play like I do now.  I'm sad for that, but, I'm glad to have a job.  I'll work it out somehow.  Just hate to miss all the whiteboard action, unless they've finally fixed that on the mobile site.  

Anyway, will definitely keep in touch with those of you who wish to.  You guys know where to find me.  xox

Grainne :) 

Dec 6, 2013

Well that's weird.  My last post from a couple days ago has the same date.  Must have been out to lunch when I posted it.  

So...updates on my health.  I've been extremely tired, low energy, not keeping food down ... just feeling generally very ill.  I went to get some blood work done last week and they've found that my liver is not functioning properly.  My enzymes are all over the place and my docs are afraid that the malnutrition from my childhood plus the harsh meds I'm on for the arthritis have finally started to take a toll on my health...well, more anyway.  

Aside from that little gem, I'm also locked into a flare up of arthritis that will just not let go.  My spine is killing me (bone on bone feels like..all the way down) and when that happens all the muscles in my back around my spine lock up (in an effort to hold things together, the neurosurgeon said).  When the shoulders lock up tight the blood flow to my brain is compromised some, which makes sense as most of the arthritic damage is in my cervical spine.  This leads to constant headaches (ow, right now), pain in my neck, jaw, shoulders, collar bones, ribs/chest comes from the same.  I also have arthritis in my major joints so the spine will flare up and set off the rest, it seems.  

The liver issues answer the exhaustion, nausea, diarrhea, lack of appetite.  The general malaise I was feeling...really.  The pain is from arthritis, the sick is from my liver.  I have the spine of a 75 year old woman and the liver of an alcoholic...nice eh?  I don't even drink anymore....*sigh*  

So that's the news.  If I'm not around a lot in the next few days It's just because I'm a bit down...just want to sleep the days away.  

Thanks for reading.  xx

Dec 6, 2013

Ouchhhhhhh I hate this PAIN!  I can't get it under control this time.  Doesn't seem to matter how long I sleep, how careful I am, how much I stretch and move.  D can rub my neck and shoulders until his hands cramp and I'm covered in bruises and the relief only lasts for such a short while.  Sometimes, If I'm fast, I can fall asleep before it comes creeping back in.  

I just went to a meeting that I overheated all the way through (can't be in a room with more than a small handful of people or I burst into flames and begin to melt.  It's not a "Woah I'm really warm" flash either...whole body sweating, clothes sticking to my skin, drips running down my back and between my boobs.  Not fun.  Thankfully, I don't have a strong body odour.  

I haven't managed to eat more than one meal a day for a while now.  My stomach is always upset (not as bad as it used to be though, so that's kind of nice) and food seems to be rejected as often as accepted.  There seems to be no rhyme or reason to it though. On Saturday I ate a toasted cucumber sandwich with a touch of mayo and salt and pepper...simple.  Not 30 min later I was in the washroom as it went right through me without stopping.  An hour or so later I was hungry again and made another sandwich.  Went down and stayed....no idea why.  Timing, I suppose...I wish it was more clear to me when I should eat.  

I eat apples at work...they go down with a minimum of fuss so I have some nutrients getting in me, at least.  

The pain today is in my neck/shoulders/face/jaw.  I have a headache but what else is knew.  I've managed to go a few weeks without crying (I think it's been that long) so the massive brain-splitting headaches I was having due to tears have been less regular.  I've been exhausted daily by the time I reach home and have been passing out on the couch around dinner time.  

Colt's struggling at school right now too so I'm having to keep everyone in balance and moving forward without too much turbulence.  They're starting with the threats to suspend him for being aggressive.  It was just a playground altercation but he always gets caught and always gets told on.  It's stressful, this stuff because D and I don't agree a lot of the time when it comes to Colt and how to raise him...how to translate information, is really the issue we face.  Home is exhausting.  Work....exhausting (terrified to lose new job due to god damned pain) being awake?  Exhausting.  

Of course, as the pain goes up the mood goes down.  Anxiety over the future starts anew.  I hate this panicky, desperate feeling that I'm not going to get better...only worse.  I start to tremble thinking about what life might be like ten years from now.  Everyone tells me not to look so far ahead but I'm finding it impossible not to.  Every decision I make is weighed several times against all of the odds.  How can I not?  

Ignoring this isn't helping any more.  

November 28, 2013

I hauled my arse into work today because I have a meeting I couldn't get out of this afternoon.  We got so much snow last night I was {} this close to a snow day but, sadly, it wasn't to be.  

I slept all day yesterday and had a hot bath, took tons of meds, tried to take it easy.  I slept all night too except for a small pocket around 2am.  

My doc wants to see me about my blood work next week but won't say anything over the phone (she's away at a conference of some sort until Tuesday) so I have to wait.  I feel quite dreadful, really.  The pain is bad today...has been bad for three days, out of nowhere.  I have taken double my meds to get through this day...hoping it helps.  The longer I have to hold up my head, the worse it gets.  Feels like bone on bone from my brain to my shoulders :(  It doesn't ease with anything.  I hate it.  

Okay.  Smiling.  Trying to anyway.  

Sick. Nov...I don't know what day it is. Wednesday.

Stayed home from work today.  Feeling really extra unwell.  I went to my doctor yesterday and she drew blood...had it tested stat and the results are in but she won't give them to me over the phone.  She asked me to come in today but I can't drive, the pain is so great.  I can't turn my head so well and the light of this computer screen is hurting my eyes...snow blind would not be doable for me today. So.  I have to wait until tuesday to find out what's eating at me this time.  

Weirdly, my toe is all messed up suddenly.  I think I broke it a month or so ago..had to keep it taped to its neighbour to be able to walk.  I took the tape off a week or so...wait, it was longer, two months ago maybe...and it looked ok.  Now it's suddenly swollen to twice it's size and it's itchy but doesn't hurt anymore.  Wtf.  I also think I have an infection somewhere in my body.  Head?  Doesn't feel like sinus...ear maybe?  There's no pain aside from the normal and although it's amplified beyond anything I've ever felt, it's at least pain I know.  

Slept until 330 this afternoon, had a hot bath, feeling about the same.  ugh.  So tired.  Stupid fucking body.  DO something for crying out loud.  Anyway.  That's where Iv'e been.  Heading back to the couch now.  xx

November 26, 2013

**FYI - my blog here is now where I plan to chronicle my chronic pain issues.  It won't be upbeat or interesting...just somewhere to put it.  I don't expect anyone to read or comment so don't feel you have to.  I'll love you guys anyway! xox**

Oh my freaking god I feel like crap.  I don't even know where to start.  I feel like I have a hang over but I haven't had a drop to drink.  My stomach is upset from the pain and I keep throwing up, then, when done I pretty much pass out cold.  I can't keep my eyes open I'm so exhausted.  

Yesterday I went home from work at 330 after an hour of fighting off sleep and running back and forth to the bathroom to get sick.  I hit the couch as soon as I got there, closed my eyes and remember nothing but D pulling a blanket over me and Colt kissing my head and whispering that he loved me and hoped I felt better soon.  (God I love that kid).  I slept for 16-odd hours waking to pee once.  I stood up and D launched himself up from the other couch where he was sleeping to steady me.  (God I love that man).  He stopped me from smashing into things and he sat with me while I peed.  lol.  He took me back to the couch and tucked me in again.  

I woke this morning with the same headache I went to sleep with.  I actually didn't even take my meds yesterday in the evening.  That 16 hour was allll me.  My neck, face, shoulders, and jaw are sore...driving, dull, burning pain.  It never lets up, never changes, just sits there hurting.  Reminds me of a toothache that just won't let go.  My head feels like it's splitting in half...sharp, driving, aching pain.  Sometimes it gets so bad I have to stop what I'm doing and sit still, eyes closed, holding the front and back of my head to keep it all together.  

The pain is reducing me to tears, often now.  When I cry something insane happens inside my head and I end up nearly wishing for death.  Something swells or fills up and the pain...holy fuck, I can't even describe it.  I will often find myself banging my head on something hard to diffuse the pain somehow...change it.  It makes me sob which makes it worse, then I start to throw up again....  

Today.  Pain.  Head.  Stomach.  I gained 8 lbs this weekend but didn't eat.  I lost ten lbs the week before.  Something is really fucked up here and I don't know what to do.  

Help?  Will anything help?  I've done everything I can think of medically, had every test, seen every specialist.  i've been to herbalists, Chinese medicine folks, accupuncturists, chiropractors.  I've tried physiotherapy, reflexology, massage.  I've tried meditation and focusing my mind...I've resolved over and over to manage or cope or find some way not to let this ruin my life.  

The neurosurgeon gave me ten years before things got so bad I'd not be able to work.  Are my ten years supposed to be spent in agony????  I hadn't really planned on that.  

I'm scared.  I'm down...not depressed, but feeling quite low.  How many days in a row can one pull out of this?  I just don't know what to do.  :(

Friday, November 22nd

Pain log (cause, why the hell not.  Might as well look for trends).

Took full dose meds last night (late) and woke after four hours of sleep feeling rested.  Pain in shoulders, neck, jaw, face and chest is at 6/10.  Legs are 5-10 and my head is about an 8.  The head is verging on overloading me but I've had meds and some extra advil so I'm hopeful I'll be able to get it down to 5 by the time I get home.  I have a bottle of wine with my name on it and I don't want to pass out before I get to enjoy it.  

My stomach is fine today.  Bowel/bladder function and control is improving slowly day by day.  I'm hopeful it was the Lyrica that impaired me.  

Not the worst friday by far!  I'm already penciled in to get some loving this weekend so I'm going to take advantage of that too!  

This is where I put my pain

I was keeping all of my miserable pain entries in the "I suffer from chronic pain" experience but I feel like I'm making everyone uncomfortable with my complaints, so, I'll keep them here. Gotta put em somewhere.  

Today I woke up in pain.  I was dreaming of it, actually, while trying to get things done in dreams I was struggling extra hard.  I couldn't pick anything up and I kept making a worse mess as I went along.  I was pretty frustrated.  

When I opened my eyes the first thing I felt was my neck.  When it flares up, the arthritis, the pain is sort of burning.  It aches from my neck/jaw all the way to my mid back especially around the shoulder blades and along my spine.  My arms hurt today too, end to end.  My face is sore, headaches and I can't stop moving...stretching.  I feel low as well...sad.  I want to go home and just stamp my feet and throw a fit.  I want to not feel this today.  

I need a warm cuddle and a bottle of booze.  Maybe an extra handful of meds.  I just want to give up for once, lie there and feel sorry for myself and ache in pain until I cry myself to sleep but, of course, I can't cry anymore without a brain melting headache followed by violent vomiting prior to passing out cold.  

So I guess I'll just sit here at work then.  :(

I'm tired (November 14, 2013)

It took a lot of effort to pull myself out of that rut I was in last week.  I've been trying to maintain the positive smiles but I'm all out today.  I've been carrying around a headache for four days, my whole body is starting to hurt, I cry myself to sleep at night and I have no idea which direction my future is...I think I'm just running in circles.  

I don't know what to do any more.  I don't know how to recharge...it seems like I'm just one long running machine, acting human but not feeling it.  All I feel today is pain.  From boobs to head I can't find anything that doesn't hurt.  I have an ear infection, I think....do adults really get those?  My body feels like it's breaking down again.  

How do I keep doing this?  I feel like I can take anything when I'm strong but the people around me just beat me down so much it eventually takes its toll.  There is so little to hope for on days like this. All I can do is make it through work, go home, force myself to stay awake until after dinner, at least, and then I'm out.  Mind you, I woke up every five minutes last night, it seemed.  The pain was too great. 

One of my issues is that I've cried three days in a row.  Not any sort of epic discharge of emotion, just a little five minute weep.  One was at the words of my ex love...I don't know why I agreed to see him....I knew it would happen.  The other was D...twice for him.

When I cry something weird happens to my head.  Even if it's only a few minutes and only tears (not sobbing).  My nose fills completely and my eyes turn instantly red and swell in their sockets like they're about to pop out.  The lids swell and close.  I get a headache like I can't even describe 5-30 afterwards and every muscle in my back locks.  My neck starts to throb with pain so bad I can't sit still...have to constantly massage my neck and temples at the same time.  15 minutes into it I start throwing up from the pain, I think.  Then, after I empty my stomach, I immediately crash, hard too.  I can just lie down on the floor and I'm out.  

Last night I took four advil gel caps, two doses of an opiate pain killers and two muscle relaxers but I could not get the pain to come down.  I iced my neck, heated my shoulders and back I was a mess.  Today I woke in pain and medicated...apparently I'm only going to get mild relief today as they've kicked in all the way and I still can barely open my eyes.  
Great to be at work.  :(   

No more straws. Out of options for pain relief.

!@#$%.  

So, I went to see the orthopedic spine surgeon this morning.  His resident was thorough and professional but not very kind.  He asked me questions that kept tripping me up, wanting to know about the rest of my pain, aside from my neck.  I tried to redirect him several times but didn’t want to count out the rest of the pain in case it was somehow the “aha” that clicked things together.  He did the standard neurological testing and I scored off the charts on reflexes, as I always do.  I had a very hard time making my leg muscles relax and he noted that…Something else is most definitely at work here.   

Both knees gave out on the stairs he asked me to climb so he could see my muscle strength and balance.  Both knees, stabbing pain under the knee cap.  I tried to pretend it didn’t hurt but I couldn’t put my weight on either of them so I just stood there like an idiot, looking around for someone to help me.  (I *hate* that feeling of helplessness more than anything I’ve ever experienced in life so far.  Dead serious on that one.)  I hobbled off the steps and sat and, of course, they wanted to talk about my bilateral joint pain.  

“You know it must be something systemic to affect your body on both sides at once right?”  

Yes.  I nodded, told him I was trying to find answers for it.  I redirected several times to get him away from my knees.  In the past, letting a consultant start to think about things like fibromyalgia does not end well.  (I’ve been twice to a fibro specialist who insists that I do not have it. I have zero trigger points.  Zero).  I think the resident mumbled that at some point.  They all hear that my pain is widespread and they suddenly start to insist that I have fibro because it’s a nice, wide spectrum that you can pigeon hole almost anyone with chronic pain in.  So similar to the Autism Spectrum.  Funny that….  

Anyway.  I listened as he handed off the info to the actual surgeon and then he came in to meet with me.  

The first thing he said was that the MRI’s don’t make sense when holding it up against the symptoms.  Again, I tried to explain that I was quite sure I had something like RA going on but didn’t have a high enough marker count to be diagnosed.  I told him I needed help with my neck, not my knees.  At that, he said there was a chance they could relieve the pain in one or both of my arms with some surgery on C5-C6 (the original spot of degeneration that was discovered).  I told him that was great but my arms, although painful, numb and swollen, weren’t really the priority.  It was my NECK I was there for, my cervical spine.  

The first thing he asked me was about my boss.  He saw me as a favour (my boss’s secretary asked the surgeon’s secretary for a favour).  Strings were pulled and, because he was being kind and wanted to help (I think), he decided I should have another MRI.  That will be six in two years.  The only thing he’s really looking for is more degeneration, which, he suspects, won’t really make me much of a candidate for surgery anyway.  He went on to say that the left side of my spinal cord was compressed and greatly narrowed but it should only affect one side from what he sees.  I agreed to the diagnostic and now I’m waiting for my appointment, which could come any time between now and a year from now, depending on how urgent he ranks the consult request.  

My eyes didn’t water at all.  I just sat there…  so, this is pretty much it then..my life.  Things aren’t going to get better.  I’m done with consults for now.  I’ve seen freaking everyone…neurology, rheumatology, specialized rheumatology, neurosurgery, physiotherapy, physciatry, even psychiatry.  The more specialists I see, the more dismissive they all seem to get.  I suddenly find myself feeling silly…foolish to have thought I was in enough pain to waste everyone’s time. 

D came with.  I was glad for that.  He held my hand on the way home and cried when he told me that he would stay through it all.  He said he needed to find some hope somewhere…just something that helped a little so he could feel less helpless.  His voice cracked on the word ‘suffer’ when he was describing how hard it was to sit and watch me in pain and not be able to do a thing about it.  

I needed to stop thinking about it for a bit so I came to work.  My hands are swollen and sore.  Typing hurts.  Holding my head up hurts.  I have a headache and my jaw is throbbing.  I’m in my quiet office trying not to drift away…focusing on things I have to get done.  It’s not really helping though (obviously, as I’m here typing this rather than scheduling projects).  

What the hell am I going to do now?  Honestly, if any of you have a suggestion, please throw it my way. I checked into the spinal pacemaker surgery but it’s not done by anyone here.  I called the Ministry of Health to see if there was a way to get it done in the US and they said there were circumstances that had to be met (ie can’t get the surgery in Canada and my surgeon agrees it’s a good idea to help improve my quality of life) however, if there were any complications post surgery, I’d have to travel back to the States to have the trouble addressed.  

So, in conclusion, like every other consultation I’ve had, I’ve been told I’m on my own for the long haul.  It’s starting to feel like a contest of endurance but I can’t help but wonder when I’ll hit the wall.  Once I do, there will be no coming back…no getting better or lessening the pain.  Just meds and scans and crumbling bones.  

Whatever.  One miserable, painful day at a time, I guess.  


Little nervous

Okay.  So this is it for the next little while.  I have been trying to find someone or something that could help me cope with this arthritis and degeneration (and pain) for nearly nine now.  I've tried everything from medical specialists (of course had all appropriate diagnostics done first to make sure there wasn't something underlying the issue that I couldn't see) to homeopathic methods.  I saw energy healers, natural healers, naturopaths, reflexologists, acupuncturists and massage therapists.  I've been through rheumatology twice, neurology twice, neurosurgery consults once, fibromyalgia specialists, pain management specialists and radiology and nuclear medicine technologists...  The list goes on and on and on.  :S 

This next one is the last hurdle I think I'm going to attempt to jump for a little while.  There is so much stress in hoping things will turn out well...that they will have an answer or treatment plan or some idea of how to help me.  Every time I do this I'm met with the same stare... 

"There's just nothing I can do to help you."  

Well fuck.  Once, the doc was so disenchanted with me because she was absolutely sure I had lupus but came up negative that she just walked away from my appointment.  I was sitting in the consult room with her and her resident and she just got up and walked away after telling me that she suspected my pain was more psychologically based than I was thinking.  The resident was a little shocked..said to me, "Oh I'm sure she'll be right back...." and I just quietly let a few tears go and told her not to worry about it...I was getting used to being dismissed.  

Tomorrow I will be seeing an orthopedic spinal surgeon.  This is the last hoop I really want to jump through for a while.  I'm trying, hard, not to hope for much so I'm not leveled with disappointment again.  It's such a hopeless feeling, being discharged from a service after being told there's just no help out there for me.   It reminds me that I've been fighting all my life so far.  I hate being reminded of that...it's so exhausting.  

I'm a little nervous but I'm trying not to think about it.  What will be, will be.  By this time tomorrow, I should at least know if there's any hope for a better quality of life or if I'm simply going to have to figure out how to cope with the pain forever...while trying to be there for my Colt....while trying to work full time.  

(Wants to go back to bed)  

Coping

As I have been complaining of late, my arms from shoulder to fingertips are really bothering me.  I have acute pain in my shoulders (Joint pain), elbows, wrists and fingers.  It's believed to be nerve damage caused by my collapsing spine pinching/damaging my nerves.  Why it's bilateral (both sides) is beyond me.  No one seems to have answers for that part of my symptoms.  

Today I woke up and couldn't feel my arms (except for the burning in my joints).  I feel a bit like a ogre...giant swollen ham-hands swinging by my sides.  I can only feel half of them as the pinky finger side is nearly completely numb and they curl into useless balls of fingers firs thing in the morning.  

I struggled with the shower (taps hurt, shampooing hurts, dropping soap every three seconds on my toes hurt), and when I got out the colour had returned some but every vein in my hands was lit up.  I forced blood into them by squeezing my arms with my opposite (useless) hand and the blue went away...the nerve pain got worse and my fingers started to swell but...mah.  Was better than blue.  

This morn, D looked at my hands and said something frightening.  

"Your fingers are starting to twist inwards.  Have you noticed?  I didn't want to say anything until I was sure..."  

*sigh*  Yeah.  I noticed.  

The doc has been trying to diagnose me with Rheumatoid Arthritis for ages but can't get the right count on my blood work for it.  That would be something eh?  I'll have degenerative disc disease in my spine, osteo arthritis in my shoulders and other assorted joints, then RA over top of everything else.  It'll be an arthritis hattrick!  

Fuck.  Seriously?  

This is my dumping ground.

Hey all...this is the place I'm going to discharge my complaints about the crumbling spine and it's many gifts of elevations to my tolerance scale for physical pain.  I KNOW it's rotten, I know it's hard to read and even harder to comment upon.  Please don't feel you must...just leave me a hug on my whiteboard and I'll know you were here.  I hate making my friends feel like there's nothing left to say....helpless.  

So.  This weekend has been painful so far.  I was really flared up all day on Friday (and earlier in the week) and it hasn't even started to let up yet.  My arms are nearly 50% numb now, my middle finger to pinky as well on my right hand.  My left hand hasn't gotten as bad with nerve pain...kind of happy about that.  I think the left may be done getting worse and may now be on the mend.  

The weird part is that I can still type even though I can' t feel the fingers.  Fast too...probably up around 200 wpm without a hesitation.  I think I can type faster than I can think...certainly faster than I can speak.  I've been terrified of losing that skill as it's essential to my job.  It seems that the muscle memory isn't dependant upon fingertip sensation...so, good news there.  

My shoulder joints feel like the 'ball' in my ball joint has been turned into a razor sharp triangle, still being jammed into a round socket.  That feeling is double for my elbows and then I have regular arthritic wrists and finger joints.  My neck, I don't even want to pay enough attention to be able to describe it.  Bone on bone is as close as I want to go.  The muscles in my arms, shoulders, neck, jaw, face and upper back are seized and hurting so much.  I feel so weak...like I've been holding up a 100 lb weight all day.  All I did was clean one room, do one load of laundry and sit on my ass.  :(  

I have a headache that *never* goes away.  My eyeballs hurt.  My knees.  My right big toe.  FUCK.  I mean, there's just not a lot of untouched real estate on me, when it comes to pain.  

So.  I'm plotting to seduce D.  I need, so desperately, to feel something good to counter balance some of this pain.  

*complaint complete - not to worry on the comments guys.  Thanks for reading*  

Side effects

It was suggested to me that maybe some of the nerve/muscle control issues I'm having are actually a side effect from one of my meds.  I looked up the lyrica (the newest addition) and found this.  Apparently, it can be the cause of just about anything!  (holy shit...really!)  Soooo yeah.  I hate seeing stuff like this.  It's way easier to just swallow the pill and be glad it's helping me.  :( 

For Healthcare Professionals

Applies to pregabalin: oral capsule, oral solution

Nervous system

Nervous system side effects including dizziness (up to 38%), somnolence (up to 28%), ataxia (up to 20%), tremor (up to 11%), neuropathy (up to 9%), abnormal thinking (up to 9%), abnormal gait (up to 5%), confusion (up to 7%), speech disorder (up to 7%), amnesia (up to 6%), incoordination (up to 6%), twitching (up to 5%), vertigo (up to 4%), myoclonus (up to 4%), euphoria (up to 3%), and nervousness (up to 1%) have been reported. Anxiety, depersonalization, hypertonia, hypesthesia, decreased libido, nystagmus, paresthesia, stupor, and twitching have been reported frequently. Abnormal dreams, agitation, apathy, aphasia, circumoral paresthesia, dysarthria, hallucinations, hostility, hyperalgesia, hyperesthesia, hyperkinesia, hypokinesia, hypotonia, increased libido, myoclonus, and neuralgia have been reported infrequently. Addiction, cerebellar syndrome, cogwheel rigidity, coma, delirium, delusions, dysautonomia, dyskinesia, dystonia, encephalopathy, extrapyramidal syndrome, Guillain-Barre syndrome, hypoalgesia, intracranial hypertension, manic reaction, paranoid reaction, peripheral neuritis, psychotic depression, schizophrenic reaction, torticollis, and trismus have been reported rarely.

Metabolic

Metabolic side effects including peripheral edema (up to 16%), weight gain (up to 16%), edema (up to 6%), and hypoglycemia (up to 3%) have been reported. Decreased glucose tolerance and urate crystalluria have been reported rarely.

Gastrointestinal

Gastrointestinal side effects including dry mouth (up to 15%), constipation (up to 7%), increased appetite (up to 6%), vomiting (up to 3%), flatulence (up to 3%), nausea and diarrhea have been reported. Gastroenteritis has been reported frequently. Cholecystitis, cholelithiasis, colitis, dysphagia, esophagitis, gastritis, gastrointestinal hemorrhage, melena, mouth ulceration, pancreatitis, rectal hemorrhage, and tongue edema have been reported infrequently. Aphthous stomatitis and esophageal ulcer have been reported rarely.

General

General side effects including infection (up to 14%), accidental injury (up to 11%), headache (up to 9%), asthenia (up to 7%), pain (up to 5%), chest pain (up to 4%), facial edema (up to 3%), flu syndrome (up to 2%), and back pain (up to 2%) have been reported. Abdominal pain and fever have been reported frequently. Abscess, cellulitis, chills, malaise, neck rigidity, overdose, pelvic pain, photosensitivity reaction, and suicide attempt have been reported infrequently. Ascites, granuloma, hangover effect, intentional injury, retroperitoneal fibrosis, shock, and suicide have been reported rarely.

Ocular

Ocular side effects including visual field changes (13%), reduced visual acuity (7%), and blurred vision (6%) have been reported. Conjunctivitis and diplopia have been reported frequently. Abnormality of accommodation, blepharitis, dry eyes, eye hemorrhage, hyperacusis, photophobia, retinal vascular disorder, and retinal edema have been reported infrequently. Anisocoria, blindness, corneal ulcer, exophthalmos, extraocular palsy, iritis, keratitis, keratoconjunctivitis, miosis, mydriasis, night blindness, ophthalmoplegia, optic atrophy, papilledema, parosmia, ptosis, and uveitis have been reported rarely.

Blurred vision resolved in the majority of cases with continued dosing. Less than 1% of patients discontinued pregabalin treatment due to vision related events (primarily blurred vision).

Patients should be informed that they should notify their physician if changes in vision occur. If visual disturbance persists, further assessment should be considered. Furthermore, more frequent assessment should be considered for patients who are already routinely monitored for ocular conditions.

Other

In a cohort study of 333 diabetic patients who received pregabalin (the active ingredient contained in Lyrica) for at least 2 years, the average weight gain was 5.2 kg. Pregabalin associated weight gain was related to dose and duration or exposure.

Other side effects including weight gain have been reported. In controlled clinical trials of up to 13 weeks, weight gain of 7% or more over baseline has been reported in 8% of pregabalin-treated patients. Otitis media and tinnitus have been reported frequently. Taste loss, and taste perversion have been reported infrequently.

Cardiovascular

Cardiovascular side effects including edema, primarily peripheral edema (6%) have been reported. Deep thrombophlebitis, heart failure, hypotension, syncope, and postural hypotension have been reported infrequently. Depressed ST and ventricular fibrillation have been reported rarely. There have been postmarketing reports of angioedema and headache.

Specific symptoms of angioedema have included swelling of the face, mouth (tongue, lips, and gums), and neck (throat and larynx). There have also been reports of life-threatening angioedema with respiratory compromise requiring emergency treatment. Pregabalin should be discontinued immediately in patients with these symptoms. Caution is recommended if prescribing pregabalin to patients who have had a previous episode of angioedema. In addition, patients who are taking other drugs associated with angioedema (e.g., angiotensin converting enzyme inhibitors [ACE inhibitors]) may be at increased risk of developing angioedema.

Respiratory

Respiratory side effects including dyspnea (up to 3%) and bronchitis (up to 3%) have been reported. Apnea, atelectasis, bronchiolitis, hiccup, laryngismus, lung edema, lung fibrosis, and yawn have been reported rarely.

Genitourinary

Genitourinary side effects including urinary incontinence (up to 2%) have been reported. Anorgasmia, impotence, and urinary frequency have been reported frequently. Abnormal ejaculation, albuminuria, amenorrhea, dysmenorrhea, dysuria, hematuria, kidney calculus, leukorrhea, menorrhagia, metrorrhagia, nephritis, oliguria, and urinary retention have been reported infrequently. Acute kidney failure, balanitis, bladder neoplasm, cervicitis, dyspareunia, epididymitis, female lactation, and glomerulitis have been reported rarely. Unilateral painful gynecomastia has been reported postmarketing.

Musculoskeletal

Musculoskeletal side effects including myasthenia (1%) have been reported. Arthralgia, leg cramps, myalgia, and myasthenia have been reported frequently. Arthrosis has been reported infrequently. Generalized spasm has been reported rarely.

Oncologic

Oncologic side effects including an unexpectedly high incidence of hemangiosarcoma have been reported in animal studies after pregabalin (the active ingredient contained in Lyrica) was given their diet for two years. In clinical studies comprised of 6,396 patient-years of exposure, new or worsening-preexisting tumors were reported in 57 patients. It is not known if the incidence seen in these clinical studies is or is not affected by treatment.

Hypersensitivity

Hypersensitivity side effects including allergic reactions have been reported frequently. Allergic reactions have included skin redness, blisters, hives, rash, dyspnea, and wheezing. Pregabalin (the active ingredient contained in Lyrica) should be discontinued immediately in patients with these symptoms. Anaphylactoid reactions have been reported rarely.

Hematologic

Hematologic side effects including ecchymosis have been reported frequently. Anemia, eosinophilia, hyperchromic anemia, leukocytosis, leukopenia, lymphadenopathy, and thrombocytopenia have been reported infrequently. Myelofibrosis, polycythemia, decreased prothrombin, purpura, and thrombocytopenia have been reported rarely.

Dermatologic

Dermatologic side effects including pruritus have been reported frequently. Alopecia, dry skin, eczema, hirsutism, skin ulcer, urticaria, and vesiculobullous rash have been reported infrequently. Angioedema, exfoliative dermatitis, lichenoid dermatitis, melanosis, petechial rash, purpuric rash, pustular rash, skin atrophy, skin necrosis, skin nodule, Stevens-Johnson syndrome, and subcutaneous nodule have been reported rarely.



Where's the parenting section?

Shit.  So I suddenly find myself with a surly pre teen on my hands.  I swear it was just yesterday I could get him to do something for a *star* on a chart and now he's openly challenging me, mumbling things under his breath when I ask him to do something, glaring at me....GLARING at me?!  The saucy little bugger.  He may get it easy because he's disabled but no kid of mine is going to cut those glances at anyone...unless he's being bullied.  Then, he can glare and tell and fight back all he likes.  Mind you, there's no way to define the line for someone who can't sense any line in any social situation...so it's complicated.  

Who the fuck made parenting so complicated?!  The moment the child is able to actually tell me what he is thinking, he shuts his trap and refuses to speak to me.  

(Am I doing this right?)

Suicide Liar (pissing me off)

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Another day and my skeleton mom

This pain is fucking insane.  
I am medicated well for the things I have happening inside my very disgruntled body and yet...ouch.  I'm still in pain. I've been staring at the numbers that flip by on my clock but it seems like they keep stopping.  There is no way a day should ever take this long to pass.  

I need a hug.  I want my mom.  The trouble with my mom is that she's dead...long gone and rotted away in her coffin.  (sorry ... I know).  When I was little I would dream of digging down into the earth to try to find my mom.  I would wake up screaming, thinking I was stuck in an underground tunnel with no air...panicking.  When I got older I would fantasize about finding her grave and then I'd melt myself through the soil and into her coffin.  I'd collect her dusty bones in my arms and rest my head on her rib cage....and I would cry.  Tell her the things I wished I could have told her in person.  

And if that's not the strangest thing you've read today, you'd doing well on EP.  

I'm trying to 'wear' my pain, embrace it, ignore it, push through it...but it doesn't seem to be ending.  I'm all for the rah rah rah YOU CAN DO IT attitude except what happens when you get to the top of that hill only to find out that there is nothing but hill as far as your eyes can see.  Really...the only think you can do is keep going or stand still.  Neither appeals to me much today.  

Alright.  I've had my break.  Back to work so I don't lose my job.  (if only I could concentrate around this bullshit.  Looking forward to learning a new method of dealing with pain.  Spoke with someone here who has some info on self hypnosis.  It can't hurt to try...what's the worst that can happen?  (don't answer that).  


Internal thunder

I swear I can hear it inside me...there's a rolling thunder in there just before the pain swells.  It never *quite* goes away, the pain...well, untrue.  Sometimes parts of it go...the nerve pain is calm this afternoon but I can feel it in my bones.  The individual ribs, my collar bones, sternum, shoulders back, neck... 

I am fully medicated and still feeling this way.  I have a headache.  It seems clinically impossible that I could have a headache with this amount of pain killer in me, but, it's true.  I will actually have to take some advil on top of my medley of pain killers to find some relief.  

This is stupid and frustrating. I wish I could find a way to ignore my entire torso for a day or two.  :S 

A bit better

Wow, it took me a full week to get the pain back in check, after a mishap that involved missing a dose of the muscle relaxant.  I can breathe this morning without as much pain...I only cringe when I move my entire torso or bend at the waist.  My head isn't pounding, for once, and I haven't been sick in a few days now.  I think I'm shifting back into balance, thank god.  

I'm sitting at my desk kind of stoned on my meds. .. waiting for the day to be over.  lol

Happy Friday. 

Just came to complain some more

There is just nowhere to put this pain.  It's wild, the way it takes over my head.  I am concentrating.  Hard.  Trying to stay on task but I need to get up and move every few minutes to be able to stand the pain.  

I'm scared.  What the hell am I going to do if this med stops working?  I hate to be so dependent on it...I mean I'm glad it works and all but... :S  I've been on a ridiculous number of drugs in many combinations to help control my pain.  The trouble is that it's getting so much worse so quickly and missing two doses, apparently, leaves me with zero relief the next day.

I have so much more I wanted to do with this body of mine.  I try not to worry too much about the future, but in this, I can't help but wonder what life will be like when I'm 50 :(  

Ok.  Complaining over.  For now.  

1-20 of 68 Blogs   

Previous Posts
Good News/Bad News, posted March 31st, 2014, 3 comments
Dec 6, 2013, posted December 6th, 2013, 4 comments
Dec 6, 2013, posted December 3rd, 2013
November 28, 2013, posted November 28th, 2013, 1 comment
Sick. Nov...I don't know what day it is. Wednesday., posted November 27th, 2013, 3 comments
November 26, 2013, posted November 26th, 2013, 1 comment
Friday, November 22nd, posted November 22nd, 2013, 2 comments
This is where I put my pain, posted November 21st, 2013
I'm tired (November 14, 2013), posted November 14th, 2013, 2 comments
No more straws. Out of options for pain relief., posted June 19th, 2013, 4 comments
Little nervous, posted June 18th, 2013, 5 comments
Coping, posted June 12th, 2013, 3 comments
This is my dumping ground., posted June 8th, 2013, 6 comments
Side effects, posted May 29th, 2013, 2 comments
Where's the parenting section?, posted April 22nd, 2013, 4 comments
Suicide Liar (******* me off), posted April 8th, 2013, 7 comments
Another day and my skeleton mom, posted March 19th, 2013, 6 comments
Internal thunder, posted March 14th, 2013, 7 comments
A bit better, posted March 8th, 2013, 1 comment
Just came to complain some more, posted March 1st, 2013, 4 comments
Sad today, posted February 24th, 2013, 1 comment
Struggling, posted February 19th, 2013, 4 comments
I mean, seriously...., posted February 11th, 2013
Idiot...., posted February 11th, 2013, 2 comments
Sleep!, posted January 31st, 2013, 3 comments
Lonelilly, posted September 5th, 2012
Soulmate number 34, posted August 10th, 2012, 3 comments
Unwell - new...well, newish, symptoms, posted July 16th, 2012
Sad (a little), posted July 12th, 2012, 3 comments
Balanced...for the moment, posted July 11th, 2012, 1 comment
New symptoms (July 4, 2012), posted July 4th, 2012
Can I get an IV ?, posted June 20th, 2012, 2 comments
Doc just called back, posted June 19th, 2012, 2 comments
DAMNITTTTT (blowing off stress), posted June 19th, 2012
This seems a good place to put some crap, posted June 18th, 2012
I fell again..., posted June 12th, 2012, 1 comment
Just not well., posted May 30th, 2012, 1 comment
Where do I PUT all of this??, posted May 28th, 2012, 2 comments
Remembering, posted December 6th, 2011, 4 comments
Fails, posted August 29th, 2011, 12 comments
Eeeek~!, posted August 24th, 2011, 5 comments
Test results are in..., posted August 16th, 2011, 8 comments
Something is wrong, posted July 7th, 2011, 16 comments
For Berg, posted June 13th, 2011, 6 comments
The Hospital, posted June 7th, 2011, 2 comments
My comfort song, posted May 16th, 2011, 1 comment
Ahhhh, posted May 12th, 2011, 1 comment
Rest, posted May 11th, 2011
Up and down all at once, posted April 7th, 2011
And here comes the pain..., posted April 5th, 2011
1-50 of 70 Blog Posts   

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