As I sit here, still wondering if my employer will approve my sick leave (warning: do not ever go on sick leave if you happen to be on strike. They say it’ll be business as usual for the sick leave but it’s really, really not) I’m finding myself sinking deeper and deeper into despair. It’s not just the fact that I have no idea how or when or if I’ll get paid. It’s the pain.
This pain is stupid.
I am home, for the first time not worried about what I am missing at work and yet I can’t DO anything. I hurt too much. When you’re home this long and semi-incapacitated like I am you start to notice things. You notice how horribly messy your house is and yet you can’t do a thing about it because you are in too much pain.
There is fur, dust and clutter everywhere. I am not exaggerating either. There’s no way I’d ever have anyone over right now because I am honestly embarrassed by the state of my home. Bathrooms need to be cleaned, the clothes that have been strewn all over the guest room need to be folded and put away. Mostly it was winter stuff that was left out to be stored for the summer, then the summer got to hot and too busy and nothing happened. Now there’s summer stuff on top of the winter stuff and one morning I was so frustrated by not being able to find an article of clothing I just went crazy and threw all the clothes around.
Yeah. That happened.
And it’s a mess. But I can’t do anything about it.
Oh, I could probably fold one or two items before my arms and back started hurting, but I’d have to stand, which I can’t do because of my feet and legs. Ugh.
I have a mental list of everything I want to make Shawn clean over the long weekend. heh Of course I won’t do that because he’s been busy and exhausted at work, so of course he needs time to unwind.
I sort of wish I was just home because I was on strike and I didn’t need the strike pay. Then I’d have all the time in the world to clean. Sadly, I am just home trying to fit in stretches when I don’t hurt too much because I am supposed to get decent exercise in order to help combat the pain – BUT IT HURTS TOO MUCH TO DO! Gah!
I am also bored.
Bored out of my mind.
I spend a lot of time surfing the web while sitting or lying down. The web is boring. Seriously. I’m in a reading funk. Nothing is capturing my attention. There are two problems there 1) sometimes it hurts too much to hold a book and b) sometimes I am in too much pain to really focus on what I am reading since I am spending so much time trying to get comfortable.
Being in pain is a pain!
I did have a couple of better days this week and made “fancy” dinners. (fancy = I cooked) Last night wasn’t one of those nights and Shawn didn’t leave the office until 7pm so we just ended up with McDonalds when I picked him up at the autopark. (Driving by myself is still really strange and I don’t think I like it very much). I wasn’t going to wait around while Shawn was stuck at the autopark for 40 minutes waiting for the bus. I did make him drive once I picked him up though because I really wasn’t feeling great. I have no idea what we’re going to do for dinner tonight. Friday is always a late at work day, so I don’t expect Shawn home until after 7pm again. I think I might have done too much on my “good” days because yesterday and today my body is cranky.
I think the new medication is starting to work. I hope so because I am tired of being in pain for no reason. There will still be no reason for the pain if the meds work, but at least I won’t be feeling the pain so I won’t notice it.
I am so frustrated by so many things right now. I need a vacation. (Because staying at home, being in constant pain through your entire body while stressing over your work situation isn’t a vacation. Don’t ever think it is.) I need to go somewhere and feel better and not worry about anything (read: money). I want to go far, far away and just be able to have fun every day.
This took me forever to write because my hands and wrists are sore.
I am happy this is a long weekend and I’ll get to spend time with Shawn (not just telling him what to clean ). I’m super lonely at home. At the same time, I don’t really want to be dealing with people.
Things should get better soon, right? I really think it’s about time.
On Tuesday morning I had my 6 month follow-up with my Rheumatologist as I am still being followed for my mystery pain that seems to be caused for no reason. This is the Utopian Department of the hospital. The one where everyone is super nice and happy and you get taken on time. The appointment went something like this:
Dr: So when I saw you in August we said you should try to decrease from 20mg to 10mg for two weeks and then try to stop the meds.
Me: Yeah, well, after 5 days of 10mg the pain was so bad I was back to not being able to exist without hurting.
Dr: So, you should keep taking the meds if you’re ok with that. They are not harmful and such a small dosage isn’t something I would worry about.
Me: I’m so down with that, yo.
Dr: And as I told you last time, you have Fibromyalgia and…
Me: Um… actually you told me last time “I don’t want to say you have Fibromyalgia because of all the ‘stigma’ attached, it’s sort of a cop-out diagnosis”
Dr: Oh. Well, I wrote here that you have Fibromyalgia.
(please note my doctor is awesome and this was a very humour-filled conversation. Not once did I get upset about the conversation. It’s one of those “you had to be there” things because he’s a great doctor!)
So I am officially diagnosed with something.
What does this mean? Well, to me it really doesn’t mean anything. If you look up Fibromyalgia online it is pretty much the cop-out diagnosis. It means that there is no medical reason doctors can find to explain why whatever is happening is happening. It has like, all the symptoms in the world. It’s one of those things that a person can look at and pick out 10 or more things and say “OMG! That is SO what I have!” and then pester their doctor for drugs and time off work.
Every single serious and scary reason for my extreme pain in my tendons has been ruled out by blood tests, MRIs, x-rays and um.. wait, think that’s it. I have had so many different blood tests I am amazed I have had enough blood in my body to live this long. The pain I was feeling wasn’t in my head. The inflammation actually showed up in blood tests and scans. But there is No. Reason. For. It.
I guess now I can play the Fibromyalgia card for things. I tried it at work already stating that as I now have an official reason for my chronic fatigue that I should be allowed to take naps during the work day whenever I need one. This was met by a smirk and eye roll by my boss so I tossed out, “Or, I can just say that my stress level is too high and go on 6 months disability. Neener neener. Make your choice, woman.” That didn’t go over too well either. Although I think I might be closer to making the nap thing work. (I love my boss, she’s so fun to be snarky with and she’s very supportive of me.)
My doctor can’t tell me why this happened or what I can do to make it go away. I am sleeping better (because these pills also apparently help with insomnia), I am exercising a lot because I don’t hurt with the meds. I am eating better (most of the time) and the only thing I can’t do anything about is reduce the stress in my life because, hoooo boy, yeah. Not going to happen. I have a very stressful job, too, so that’s not really something I can change unless I leave it.
I don’t like not knowing WHY this is happening and HOW I can make it go away. This diagnosis is almost the same to me as a non-diagnosis. Sure I have a name to toss around now, but it really means (to me) “we have no idea, so we’ll just make something up.”
What matters to me is that with 20mg of some drug I don’t hurt and I can function in every day life like a normal person and I don’t think about the fact that something is wrong. When the pain is back that’s all I can think about and I start to panic that I have cancer or something just as deadly. When I am not in any pain? I don’t think twice about it.
I guess it’s nice to finally have a doctor tell me I have something after so many years of being in and out of the hospital with real, visible problems but never any cause. I guess. I can’t really decide how I feel. Yes, I have a “label” but at the same time it doesn’t really mean anything. I hurt a lot, my tendons swell and inflame from head to toe when I am not taking these little pills, but there’s no reason they should be. No medical reason at any rate.
But I now have a label, and if there is stigma attached, then so be it. I am not about to take advantage of my health benefits and go on sick leave for 6 months (although, some days I am tempted to do just that. Six months away from the office… bliss!). The only way I would take leave is if it was very serious and I was near death. I managed to work through the pain as it reached its peak before I got to see my Rheumatologist so I think I can handle working without pain.
I don’t think this changes anything, but I guess now I can tell people what I have and not just say “Well, I can’t lift that because I hurt” and not seem lazy.
I don’t know. I don’t know enough about this to decide how I feel.
I wasn’t in hyper-panic mode for nothing. The one and only other MRI that I had was so awful that I had nightmares about it for months after I had it. It was the worse feeling in the world having your arms pinned at your sides and the ceiling half an inch from your face. I hated it, the drugs didn’t work, because when I am in full-blow panic attack mode I’m like a perp on PCP that can be shot 5 times and still keeping coming at you. I don’t do calm very well.
I was useless at work for the 2.5 hours I was there. I was shaking and I could already feel my breath going into hyperventilate mode. I popped two gravol on the way from work to the clinic. Thought, hmm, the more downers I have in my system the better. I got there at noon and I handed them my credit card and $1300 late (ulp) I was sitting in the waiting room, just taking my book out of my bag and .. they call my name! Actually since one of my two MRIs also involved an x-ray the nurse just did it then to get it out of the way. My first MRI was still at 1:30.
And they gave me my two 1mg Ativan while I sat and tried to deep breathe in my little closet thing with the locker. I was only in my robe and socks (stupidly I picked undies with sparkles in them, I didn’t even think about it, so I asked if it would be a problem and to be safe we went sans undies.). The pills had made my head sort if wobbly, which I took as a good sign. And I let the WONDERFUL doctor (nurse?) doing the test know how terrified I was and she was so kind. I couldn’t have headphones for the first test because my head was in some sort of brace-thing which sent me into more throws of terror. I had earplugs and she gave me a blindfold, which I was grateful for, although I was starting to feel all vertigo-y. Then she pulls off the mask and says “Look, you’re really almost out of the machine on this end, does that make you feel better?” And I was. The tippy top of my head was out and it was all brightly lit and flowy cool air and it made me feel SO. MUCH. BETTER. I kept the blindfold off and I just closed my eyes. Even with my eyes closed it was bright, so I felt like I was in open space. Also the way the machine curves at that end isn’t the same as the other end and I felt so much less claustrophobic. I just closed my eyes, breathed and listened to the weird noises the machine was making. It totally sounds like someone talking in a mic.
Dot dot dot dot knock knock knock knock baby baby baby baby burger burger burger…
And it had rhythm. Which I started to make up songs to. In the end I just hummed Sarah McLachlan songs during the entire thing. I had to laugh when I was listening to a couple of noises, which sounded like the machine was setting up or something and then the nurse says “Are you ok?” Me: Yes “Ok, so the next set of photos will be 5 minutes.” Me: Wait? We’ve started already?? *laughter through speakers* “Yes, we have! Feeling better?” I could hear her smiling. I knew it wasn’t going to be horrible after that. I was also much more comfortable with being allowed to have my hand crossed over my chest and not pinned at my sides.
Oh, and it was only 30 minutes and NOT 50 like they booked me. Apparently as long as there are no problems both tests should be 30 minutes. If there were problems (movement, etc, reshooting) it would be longer. So I was out of there a lot faster than I thought I would be. So when I was back in my closet, drugged out of my mind (wheeeee!) I phoned Shawn to let him know I was doing just fine, so he wouldn’t worry anymore, and that I was going to be finished way before 4:30 like I thought since this was all so fast. I phoned my Mum too to let her know I was ok. 30 minutes later I was back in the machine and this time?
I fell asleep.
I kid you not. Although this way (feet first) I had a huge plastic thing strapped to my body and it wasn’t all that comfortable and with my head in this direction, it was much more similar to my liver MRI only I could have my arms crossed on my chest as well which made all the difference. I had the headphones on this time that pumped in lousy radio music (we don’t have any decent stations up here) and I think I would have preferred to have just had the earplugs again because the music wasn’t really loud enough to hear over the “baby baby baby burger burger burger dotdotdot” and I would have rather hummed my own songs. Either way, I fell asleep and the scariest part about MRI #2 was when they took off my headphones and unhooked my plastic board thing because I didn’t know they were there. All of a sudden I had two women staring down at me and I literally went “Gah!” and they laughed. “Fell asleep, huh?” Me: *mumble* I guess so!
Shawn had just shown up as I made it out to the waiting room – great timing. I was so sleepy and it wasn’t even 4PM yet! Made it home by 4:22 and I was torn between food and sleep, but sleep won out and next thing you know it was twenty after 6 and the only reason I woke up is because someone rang the doorbell – which confused the hell out of me because I thought I was still in the MRI.
Managed to eat, watch some TV (GLEE!) and then was back in bed, only to wake up at 10:30 this morning. What lovely, lovely, drugs they gave me.
And now, the next time I have one of these things, I will NOT be living in terror and I know to tell them to give me the 2 pills before I go in the machine. If I ever need to do one where my head is in the MIDDLE of the machine, I won’t like it one bit, but as long as I can see out the edge, I’ll be a-OK.
Ok, so I don’t mean to only blog on the weekends, but it seems to be turning out that way. Not being able to do this sort of thing during the day at work really decreases blog productivity. At the same time I am happy I am not sitting there, bored out of my mind all day. However it would be very nice if I had any downtime at work. Very high stress job and lately, with all these health things, I have been thinking about how I might need to reevaluate my career. I would love to do other things, but you need those other things to be able to pay the bills, you know?
Just to update those who might have wondered, the dogs are both doing better. We starved them for a day to make sure they had nothing left in their systems, and then we introduced food back slowly and it seems to have helped. We bought the Purina Beneful soft food to mix in with the kibble, in case Annie was having teeth problems. We’ve kept it that way all week. They each get one half of the soft food container, and two scoops (rather than 3) of the ProPlan kibble. And as always, this wet Beneful makes us want stew. They look really good! Dogs are eating better than we are. heh.
And as for me? Well, I’ve got my MRI date set – this Wednesday afternoon. In fact, the lucky dog that I am, I get TWO MRIs in a row. Yep. That’s right! (I am so going to die of a massive panic attack.) Apparently what the doctor is having them do the MRI for involves two complete MRI exams at 50 minutes EACH. (And $650 each. Ick.) One is HEAD FIRST and OH MY GOD IT WILL KILL ME!!
In January 2007 I went for my first ever MRI when they needed to look at my liver. “Don’t worry,” they said. “Your head will be out of the machine, since it’s your liver,” they said. They of course didn’t take into account the fact that I am SHORT and the only part of my head that stuck out of the machine was the top of my HAIR. Of course I panicked and I did not like the experience at all even though I could turn my eyes up and see outside. So the thought of going head-first into this machine for the first exam is terrifying me and the clinic already knows to drug me and I have a feeling I’m going to need something stronger than the last time. I am not looking forward to this. I’ll get a 40 minute break between MRI stints and then I am in for another 50 minutes where I go in feet first.
It doesn’t help that it looks like my insurance only seems to cover a maximum of $750 a year in MRI bills. At least it’s something and I am going private because I would much rather get to the bottom of all of this than have to wait 6-9 months or MORE for an appointment at the hospital. At least now, with the pain killers working, I don’t feel quite as desperate and despondent about my life. But I would still prefer to have answers sooner rather than later.
Oh, and these pills? They are miracle pills. Monday morning was the first time IN OVER A YEAR that I had NO pain. Nothing. I walked up stairs like I was a young, spry person and not a 90-year old woman. I didn’t feel like puking when I got to the top from the pain. I didn’t even need to use the railing! Wow! And this entire week has been pain-free. Only by the end of the week, well, now that the main pain is gone, my pills seem to have decided to tackle the rest of my body and my entire body is NUMB.
What isn’t fun are the sleepless nights, horrible night sweats and sort of vacant stoned feeling during the day. But I’m not in any pain, so I’ll deal. I ♥ my Naproxen.
Also this weekend – we finally put the nautilus gym together! Shawn is using it right now as I write this. It was taken apart after the fire, stuck in storage for a year and then just sat all apart in one of our empty rooms when we bought the house. This past Easter weekend we got around to cleaning out all the boxes and junk we still had in that room and the plan was to put the gym together before the summer. So that didn’t happen. But we did it today! I hope (now that I don’t hurt so much) to try and use it once in a while and I really should start using the elliptical machine again. Maybe when I watch TV at night? The problem is I don’t like doing something like that so close to bed time. Hmm. What to do? Getting up early in the morning to use it is so very, very much out of the question. I need to do something. Maybe now that I am not hurting as much I could go back to Curves? Of course not having to pay the $44 a month is better on my credit card, which is about to weigh an extra $1300 as of Wednesday. Sigh. I need to do something. I am starting to fit comfortably into my fat-pants. That is NOT good.
The highlight of this week will be the Girls’ Night on Tuesday. I’ll be going to see Fame with my wonderful work BFFs Maureen and Elise and Elise’s best friend Steph (whom I adore!). I am so happy! Dinner and a movie with 3 wonderful gals and I think I really need this. Next day – MRIx2 and then I might be off Thursday and Friday this week (because I have an amazing boss who knows I need some mental health time and to recover from the lack of mobility/strength/pain).
I’ll keep you posted on the MRI front!
I have been to the hospital many times, I am sad to say. I have whined in other posts on this blog how there is always something going on with me. Quite frankly I am tired of it. At the same time, once I seem to over come one thing the next thing doesn’t seem like such a big deal. I mean, after you spend many years of your life medicated for one thing or another, and in some form of doubled-over-thinking-you’re-going-to-die pain, everything else seems somewhat anti-climatic.
It’s not as though I expect something to happen once one thing is over. I tend to realize I’m feeling ok and think “Wow, this is what it must be like to feel normal” and BAM! I am hit with Chapter The Next. Oh, well.
Since the pain in my hips, lower back and knees has gotten so bad I often have to crab-walk up the stairs to bed, I made an appointment with my GP to figure out what it was. This has been going on for 2 years now, the first year was fairly innocuous. I would have joint pain and swelling only during my PMS week and then it would get better. One day it forgot to go away and it would increase with each month. Since I had some pills to renew anyhow, I though I would bring it up. Hence the blood tests I was sent for during the winter to check for Rheumatoid Arthritis. Those came back negative, thankfully. Of course other things were sort of off-the-chart and when I had my follow-up appointment (almost 4 months after the results came in!) my GP handed me a referral to see a Rheumatologist. (Which IS a word! I wish my spell checker would just accept that already!!)
I will admit I was scared. Not so much as to what might be ailing me (because the results are actually inconclusive, they just mean there is SOMETHING there) but because when it comes to meeting new doctors and visiting new departments in this hospital, well, it’s hit or miss. Even my GI doctor is a coin toss as to whether or not he’ll be friendly or so condescending that he’ll have me in tears by the end of our 30 second appointment. I was not cherishing this new encounter. Plus some people at work mentioned that generally rheumatologists aren’t always that friendy.
Friday morning I drove into town with Shawn, sat in Second Cup and had some tea, a bagel and a brownie thing, read for an hour and a half and then made my way up to the hospital. First – the bus showed up as soon as I got to the stop and I got a decent seat. Second – when I got to the hospital the elevator opened and I didn’t have to wait 15 minutes for it. Then I wandered off at the 6th floor and followed the signs to the department. I went through these double fire doors that looked uninviting and entered… Hospital Utopia.
It was bright, clean, spacious! People were smiling! The receptionists were FRIENDLY (in GI? Not so much. Nope. I don’t think they know the meaning of “smile”.) These two ladies? So nice! As I waited in line to hand in my cards I watched as doctors came up to the desk to take files, they greeted patients by first name, joked with the receptionists, smiled. It was calming actually. I was a half hour early, which was good because I had to fill out a little paper thing.
When I was call – ON TIME!! – my doctor (young, handsome and smiling!) apologized for the long walk to the last exam room in the hall. I told him I didn’t mind because this was like some magical secret garden part of the hospital I had never seen before and I was enjoying seeing what was around. He laughed. LAUGHED! (I know I am positively witty and charming, but it doesn’t always work on hospital doctors. ). My appointment went well. He asked me questions, LISTENED to my answers, LISTENED when I mentioned some other things he didn’t ask about and not once did he say “oh, that’s not related at all, I’m the doctor, I ask the questions” (which has happened to me in the past). He examined me, poked and moved things and apologized when I yelped a couple of times due to extreme pain.
Then told me he was sending me for more blood tests to see if anything had changed since March, X-Rays and a complete head-to-toe bone scan. Blood tests I was just going to wander down the hall and have done since I wasn’t going into work that day, but I wasn’t relishing phoning those two other departments for the tests because they aren’t always the friendliest on the phone AND I was thinking, this will take months!
Yeah, no. The receptionist PHONED and made my two appointments for me (!!!!) x-ray in July and bone scan 2 weeks later in August and my follow-up appointment there? September (wanted to make sure they had the bone scan results in by the time I was seen again). So I took my little blood test paper when they handed it to me and was saying “ok, thanks, you guys are awesome, see ya!” when they said “just go through that door and she’ll take your blood.”
They have their own blood test technician!! Wooohoooo! I didn’t have to take a number and wait 3 hours for my tests in the main clinic! *dances* So I said “Wow, you REALLY ARE awesome!” they laughed. I even thanked the doctor for being so nice. He looked at me funny and I said “Well, I was really nervous about seeing a new doctor. You never know, right? And you’re really great, so thanks!”
So I have no idea what is wrong with me. I am scared in the back of my mind because I keep having nightmares about it, but during every day concious thought it doesn’t cross my mind. Sure, I hurt a lot and I am actually in way more pain than I let on. I was about to say those I work with don’t even know the amount of pain I hide from them, though those that read this will now know. So don’t ask me to pick stuff up off the floor for you, I’m not being rude, I just can’t do it.
We’ll see what happens. I’m not holding my breath that they’ll find anything. Advil and Tylenol don’t seem to be cutting it for pain killers but I also don’t want to be popping all sorts of pills. So I’ll deal. It’s what I do. After everything I have been through in my 33 years, it’s what I am becoming a pro at. Dealing.