Happiness
I was worried about attending the kids’ school play and second graduation ceremony after having such a bad experience the day before (Monday), but Tuesday night went so well – I couldn’t be happier!
I tried to be positive and clear my mind of the incidents of the day before, where I encountered someone who blocked my view, and I had to do some uncomfortable manoevering to see my son’s first graduation ceremony (they do a lot of ceremonies in this school!) I came prepared, took my breakthrough painkillers, arrived extra early, sat in the front row, tried to avoid crowds by arriving so early and timing my movements to when the crowds would be less active ( they offered a snack buffet which we didn’t stay for – partly because of the crowd that I wouldn’t be confident to manoever, and partly because I had been sitting for 3 hours by that time and would need to get home to lie down and rest by then). So, some planning went into it, things went smoothly, I handled myself much better – and I even went for my short walk in the morning, giving myself ample time to lie down between the walk and the time I needed to go out. One thing I did take a chance on was washing my hair and taking a bath – I don’t normally do that the same day as I’m going out. I’ll take a quick bath, but I won’t wash my hair – I find it too tiring. However, this day I hadn’t had the chance until the very day, and I did everything and coped. It must be a signal as to how much better I am feeling compared to not only before I had my gall bladder surgery, but even how I was last fall.
On another note, I went for a long shopping trip today with my hubby and was walking for nearly 2 1/2 hours straight! I couldn’t believe it! I was in a lot of pain, and had to take my breakthrough meds twice, but I managed. I was truly limping by the time I got home, however I did even stay downstairs for dinner, whereas most nights I would have been lying in bed by then. I feel like I’m pushing myself a bit every day, even in the small stuff, and making small improvements with every choice. My walks may take 5 minutes now, but I’m building for the future. I’m able to sit up more, where I used to have to lie down for most of the time. I’m hoping I’m able to continue this. Even pushing through the pain, I’m going to try and limit the use of pain management medication because I don’t want to mask any pain that may signal I’m injuring myself, as opposed to using underused muscles.
I had an interesting musing today. I sat down at the baby area of Toys r’ Us, in a rocking chair. It was located right beside the registration desk, and there was no one around when I sat down. The clerk came by, looked at me, and went to the counter, fiddled with some stuff and left. She didn’t ask me if I needed any help. I wondered if I hadn’t had my cane with me if I would have looked more like a customer instead of a woman resting herself. I did have items I wanted to purchase in my hand, so I was obviously shopping. Or it could just mean I look too old to be a new mom – LOL! Anyway, maybe she ignores everyone unless they ask her for assistance, but it did make me wonder about it. Gave me something to do while I waited for the knot in my back to subside – then again, I may have had a pained look on my face, too! I try to hide those, but I’m bad at it, so I’ve heard!
All in all, a positive couple of days. I feel like I’m managing things pretty well at the moment, and I’m going to work hard to hold on to this magic. I know I need to be less uptight, but I’m a rather uptight person – that part is hard for me to reform. I’m working on it, and trying to forgive myself. Cut myself some slack, as it were.
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Frustration
I just came home from my son’s graduation from Senior Kindergarten. Awww. It was sweet. I tried to stay on track and focus on the sweetness of the moment, but it was so very difficult.
First of all, my hubby and I arrived 20 minutes early, so I could get a seat, and hopefully a good one, as I have trouble standing, and I’m not all that mobile still. Even though my upper back is still feeling good, my lower back isn’t great, and my hip is bothering me, it’s getting near Botox time. I felt great sitting in the car on the way over, which lead me to briefly thinking about ” what if there were a way I could get around while always sitting… hmmm….” Duh. Anyway, I probably haven’t mentioned this, but my left knee has been bothering me, too since I’ve been up and around again. I think it’s from the inactivity prior to surgery. I know, if I was a horse, they’d have shot me long ago. 
So, I get to the gym and wait in front of the doors as there is a person mopping the hall right in front of these doors, and a couple comes up and PUSHES me out of the way (I swear) and enters the gym. These are other parents waiting to see their kids graduate from kindergarten. I’m so happy. (sarcasm) yet the 9 year old behind them holds the door open for me. I set my teeth and continue on. (After thanking the boy profusely, of course!) Yes, I do have my cane with me. My big one, the one you can’t miss.
We’re the first ones in the gym. Things continue. I forget about the beginning, I was annoyed, but only mildly, people are ignorant, but why do I seem to get pushed and shoved when I use my cane? I can’t figure that out. No matter. I have hope for our future. ha ha.
Once the ceremony starts, I am sitting on the side of the gym, fairly close to the action. The parents are in a U- shape around the gym sitting in chairs and benches in one line, up against the wall , with the other kids from the school sitting in the middle of the U. The ceremony is taking place with the kindergarten kids standing and then sitting at the top of the U. I’m about 25 to 30 ft away from the ceremony on the side.
Now, let me remind you, kindergarten kids are short. Some parents are coming up and walking in front of us, but they are going off to the side and taking pictures. No problem. Well, it is kind of annoying. There weren’t THAT many parents there – it was the middle of the day, and these parents were walking back and forth, back and forth, but my hubby is 6’5″ and he stood up, back against the wall, and took video, ensuring he wasn’t blocking anyone’s view. I’m very glad he did, because some knucklehead came up to the front and sat on her knees (so she was as tall as a kindergartener) and took pictures of her kid through the whole ceremony, so I couldn’t end up seeing mine unless I stood up. I ended up mumbling something VERY nasty to her on her way by when she finally went back to her seat. A moment I’m not proud of.
Now, the problem is not really with this person. The problem is more with me. I had to stand up to see my boy. I was in crippling pain, and it took supreme effort to stand up and lean against the wall – so much that it probably looked like I was trying to climb the bloody wall to get up it. I couldn’t poke her with my cane, nor could I go over to ask this person to move without causing a scene. I would have lumbered over and drawn more attention (and blocked a lot of people’s views) to myself. One thing I hate more than anything. The other thing I hate more than anything is being reminded I’m different. That I can’t do anything I want. That I have to live with ‘accommodations’. I just want to be a regular mom seeing her kid graduate, but even that can’t go freaking smoothly. I have to be reminded that I can’t do it like a normal person.
I don’t know if I can convey here the amount of anguish I’ve been feeling about this, except to say that I had a big cry once I got home. Maybe the situation doesn’t seem like a big deal, but it’s representational of the type of thing that goes on all the time. I feel like it takes 10 times the energy to do simple things because there’s always something that will happen to remind me that my life isn’t just simple. Perhaps the easy way around it is to accept things and go on, but that’s never been my style. I’ve always been kind of stubborn in that way.
I’m not proud of myself for the way I reacted today, but I’m trying to forgive myself. I just wish people had a bit more compassion. Hell, I’ll even take awareness. Maybe I expect too much of people, but I’m not willing to turn into a pessimist yet. Curmudgeon, yes, pessimist: not yet.
I did leave the house with the best of hopes this morning. I anticipated nothing major going wrong. Maybe a bit of discomfort if the ceremony went long. Oh well, there’s the final play tomorrow night, so we can try again to see if things go well, and hopefully they will. I will be resting up all day, and hoping the seating is better planned. I did attend a party last week at the school for the class that went really well, too, and while I had to have hubby do all the schlepping, I was able to enjoy things without anyone being an ass (although, my butt did fall asleep sitting on those little chairs – my fault for having such a big butt! LOLZ). Same parents, different day, so it’s not always a nightmare.
Here’s hoping for a better excursion in the future.
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Feeling Better and Better
As each day goes by, I feel so much better. I was up and on the living room couch for visitors, even enduring a visit from the in-laws yesterday. I’m a bit tired and sore on my right side, but my back, amazingly, doesn’t hurt at all. I mean, it’s not even as sore as it was before I had kids! I feel amazing! I don’t think I could run a marathon, but I’m looking forward to taking a walk to the end of the block and back in a couple of days. My stomach has really come down from being bloated, as it was before surgery – and I must assume that the GB removal has to do with that. Hubby has me on a low-salt and low fat diet; we started this back in April, and I’m not losing weight, but we’ll see the results in the upcoming months. I’m sure it can only help.
I’m taking a rest day today. What’s really disturbing me is that I’m still sleeping 10-12 hours at night – whether I take a sleeping pill or not. I actually slept until 1:30 on Saturday afternoon, after falling asleep at 12:30 a.m. I hope it’s that my body is healing. I usually need around 9 hours of sleep, but I think this is a bit overboard. I’ll give myself another week or so before I give it too much consideration, though.
Joy!
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Post-Surgery Update!
So, it’s been a week and two days since I had my gall bladder out and I’m finally feeling like I can function somewhat. I’m awfully disappointed, I was hoping to be up, around and well on my way by now (it’s my son’s sixth birthday today) but life often has other plans. Here’s how the week went.
I arrived for my surgery at 6:00 a.m. on Wednesday the 2nd, ready to go, with my husband and kids in tow. The daycare doesn’t open until 7:30 and wasn’t too far from the hospital, so we figured we’d visit until things got going and then the kids would head off to school. So we head into the admissions room where we wait for a half hour, and the kids were fantastic! Much better than one of the other twosomes there waiting with a patient, who were talking in extrodinarily loud voices about the big, huge pancake breakfast they were going to have later that morning. If I wasn’t so weak from hunger, I might have ripped their lips off. Grrrrr. I’m not exactly at my best with no coffee and no food!
Anyway, we completed the registration process, continued on to the next phase, blah blah blah, same questions, different doctors, nurses, more doctors, and maybe even some onlookers asked me some personal questions, I don’t know. But I finally ended up in the operating room, it was very cold, and things were underway.
Because my chronic pain condition is such a worry, it caused some other complications, and I woke up in the ICU. I immediately noticed my back didn’t hurt anymore. What a relief! I was so amazed! My side hurt like nothing else, but that was heavily medicated, so who knew what was what? Shortly I was moved to a ‘step down’ bed where I could be carefully monitored. I ended up staying the night. It was pretty uneventful. There was a lot of pain, but I was covered by pain meds. I had to use a chamber pot for the night, with mixed success (there’s a trick with balancing that you have to master), and my nausea was pretty bad, but the next morning they cleared me for going home. I was happy. Scared, but hopeful.
The trip home was great, actually, hubby was careful to stick to the least potholey streets. Bouncing wasn’t my friend at this point. It was nice to crawl into my own bed, and I made good use of it. I ended up sleeping a lot for the next few days. I took the meds the doc prescribed very regularly until the end of the weekend. I was starting to feel slightly better day by day, but not really able to eat much or be enticed by food in any way. A few bites of anything was enough.
Tuesday morning I woke up nauseous again. I started puking (sorry) on a regular basis, and my digestive system was reacting very negatively. I’m not sure if my body was reacting to the new order of things, or if I had picked up a bug, having been in the hospital, but I was certainly exhibiting flu-like symptoms. I was not well at all. By this time, I still had not been well enough to do much more than crawl to the bathroom since I had gotten home, nor eat a couple of bites of food, but on Wednesday, hubby dragged me into the bath, finally. That restored me a bit. I choked down some crackers and started feeling my strength. Thursday, I rested still, and here I am Friday morning, feeling like the pain is subsiding enough that I can hardly remember the feeling I described as ‘somebody punched a hole in me and ripped my guts out’. I can walk around, my back still doesn’t hurt, and I’ve given up the post-surgery meds, as they were irritating my stomach.
My doctor described the gall bladder she pulled out of me as a ‘bean bag’ with lots of stones, indicating this had been bothering me for a while. She told my husband that often when a woman has endo, any internal pain, such as gall bladder issues are dismissed as endo pain ( as I mentioned once, with the diagnosis of endo, I could cut my leg off, go to the hospital and they would dismiss it as an endo symptom ) so I do feel like maybe some of my subsequent pain complaints hadn’t been heard. It makes me appreciate the team that I have working with me now. I feel like they listen and care when I have something new crop up, and that is something you don’t always get. It’s taken a long time to get here.
I’m also reconsidering my thoughts about having breast reduction surgery. As much as I think it might be helpful, I have realized how serious surgery is especially on me, because of my complications, and it’s something I won’t take so lightly. My husband has asked we only do emergency surgery from now on – slightly tongue in cheek, as the stress of thinking of it is too much for him. But it is pretty serious because of all that goes with it. I have to give it more thought and more consideration. It just doesn’t add up for me right now. I don’t know if it will always be that way, but for now, I’m happy with that decision.
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Surgery-PreOp
I had my surgery pre-op today. Lots of poking and prodding, but I’ve been approved to have this pesky gall bladder removed on Wednesday. I’m excited, in a way, but now it’s becoming real. They’ve decided to keep me overnight so I can be properly monitored because of my prior history and my sleep apnea. Although I’ve cut down on much of my pain meds, I’m still on enough to stop me from breathing at night – which causes concern for some reason – ha ha.
I’m hoping having this darn thing out will help with some of the pain and I can start being mobile again. That would be so great! I’m looking forward to potentially being healthier and being able to do a lot more of what I want. I already have a list of places I want to go – Sephora, the Movies, the bead store, out for a walk! It’s all going to be so good – I hope by the end of the summer this will be possible. Heck, I’m doing my best to be up and around by July!
Well, there’s no turning back. I have to do this. I can’t lie in bed forever, I might as well be dead just lying around, so I have to take steps to fix that. Fear or not. I’m not looking forward to being put under, but I must – I don’t want to be conscious!
Here goes nothin’
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So here’s what’s been going on.
In September 2009, I started having awful pains after eating. I thought I was having indigestion, or maybe a flu I couldn’t shake. I would have vomiting and a lot of pain in my mid chest, right in my solar plexus. This went on for about 8 weeks. I was in bed the whole time and had trouble getting up and doing many things for myself. It subsided a bit, and I carried on, but I was very tired and kind of weak.
In January, the pains started again, with more vomiting and more chest pains. A couple of times I thought I might be having a heart attack (although intellectually, that didn’t jive – the pain subsided too quickly, and well, I just knew it wasn’t that, but I swear it hurt almost as much. If I ever have a real heart attack – knock wood – I’ll be able to let you know. Ha ha!) Anyways, this hide and seek game with this new pain continued into February, at which point I was dragged to my doc by my loving husband. An ultrasound was ordered, and lo and behold, we found gallstones. Apparently the technician stopped counting at 20. So, it became clear that the only path was to get me an appointment with my general surgeon – lol, like I have one personal to me! But I mean, the one who saw me two years ago, for some extreme nausea and suspected gallstones and declined to operate.
Finally we had an appointment with her on April the 5th. She saw the second ultrasound I had – as I had been rushed to the ER 2 more times in extreme pain with no other choice but to go there to be treated for pain. The surgeon agreed that surgery looks like the best option, so I’m waiting here for surgery! I’ve been booked for June 2nd – not too far away! Although it seems like it’s been a long haul. Since January I’ve had a lot of trouble doing anything. Getting up and walking has been painful due to the pain spreading to my back – they call this little treat ‘referred pain’. Sitting up is not much fun, either. I haven’t had the option of resting the computer on my stomach, due to the sensitivity and bloating. And boy, has there been bloating! I look like a Mr. Potato Head! Not to mention the weight I’ve gained from not moving for five months. My hubby has been bringing me sensible amounts of food, and not too many snacks, but when you can’t move, what does your body do with all that? Add the bloating on to that, and it’s just depressing. I’m so looking forward to being able to move again, but I’m very frightened. What if the weight doesn’t budge? (oh, vanity!) But, more than that, what if I stay as exhausted as I am now? I can barely get to the washroom without being lightheaded? Taking a bath is an extreme adventure. I don’t want to be an invalid. But, on the other hand, these last few months have been easier than dealing with the real world.
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The Loss of a Friendship
I lost a long-term friendship recently. I’m not 100% sure what happened, but I can only tell my version, and what she told me. I think it illustrates the challenges of being in chronic pain – in maintaining friendships.
We decided to meet at a movie. I was in a lot of pain. I had overdid it the past week, but did not want to disappoint. I wanted to be a trouper. Hold up my end of the bargain. I had no business being there, but there I was. I mentioned I was hurting a lot. Later, my friend mentioned that I seemed to be in a ‘foul mood’. I guess she didn’t pick up on my mention of pain. Nor my joking with the theatre manager or popcorn seller. But that’s a petty shot on my part.
The movie progressed without incident, and afterwards I made a beeline for the bathroom. As so many women do. While in with the crush of women, someone hip-checked me into the sink. I tried to hold back the tears. I left the washroom and met up with my friends and our group. I began talking to another friend, saying my good-byes. My friend that I came with interrupted us, and as this was not like her, I assumed she hadn’t heard us talking. I turned to her and began to speak louder to her in the crowded lobby “I was just saying that I was in too much pain to go for something to eat… “ The rest of the sentence ‘so we can go now if you like’ died on my lips as she started screaming “JUST CALM DOWN! COOL IT!” at me. Confused, I turned to the friend I’d been speaking with, asking if I’d said something wrong. Later I’d found out my (now ex) friend had ‘percieved anger in my eyes’ as she put it – when I was speaking to her. Since this was so weird to me, as I has no intention of putting this emotion forward I discussed it with my husband.
It seems that when I’m in too much pain, I get an intensity in my eyes that can mimic anger or, well – intensity. It’s not anything other than me trying to cope with whatever pain I’m in and trying to keep it together.
The moral of the story? I don’t know. I don’t have her side. I wish I knew it. I wish I could do it over. I wish I wasn’t sick. I wish a lot of things.
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CBT Program
I went to the doctor’s the other day. Hubby took the message from the clinic. I was relayed the missive “Just go at 11:00 – see the receptionist”. Ha, I had no idea. Anyway, what I thought was another check up was actually an introduction to the CBT program at the clinic.
The CBT program is the Cognitive Behaviour Therapy Program – it teaches people with chronic pain conditions about the mind-body connection in their illness and how to manage it. I’m so excited. It’s an 11 week course, 2 half days per week. I’m so happy that I might have some excellent techniques coming out of it.
It’s not free – it’s actually $175 bucks and I’m so bloody fortunate that I can afford it. I feel so blessed right now. I have to contact Wheel Trans to see if I qualify for the program for transportation. I’m worried about the cost of cab fare to and fro. I still can’t do Public Transportation. It kills my back. Especially if I don’t get a seat – or if all the escalators aren’t working, which happens so often. It’s so frustrating. But that’s the next step.
I was crying as I spoke to the doc about the program. He was talking about how this was a safe place where people didn’t have to prove their pain or be in competition about how much pain they were in. So often I feel like people doubt me. Am I really hurting as much as I say, or portray? I feel like I have something to prove. Just letting that go would be so theraputic. Step 1.
Stay tuned for Step 2.
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Cab Drivers are Awesome!
The other night I took a cab home from the movies. As usual, the cabbie asked about my limp, if I’d been in an accident. I’d explained about my nerve damage, how I have back pain, hip pain and how I rely on cabs and public transit just kills me.
We continued on the journey, and came to a really busy artery – under construction and very bumpy. He turned off the street, turned to me and said, “You don’t need to be on this street, this bumpy street will hurt your back”.
He took me home along another route – it didn’t add any money to my fare – and I wish I had his cab number to call in to his company and give him big kudos. The tip I left just didn’t do justice. Nothing could.
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My Sister’s Wedding
My sister was married last week. It was a beautiful ceremony, very touching. But there’s nothing like being around family to make having a disability sit front and centre once again. All the issues you think you’ve dealt with come crashing back to slap you in the face.
My sister asked me to be Matron of Honour, yet she had one of her friends perform all the duties – all the physical-ness that goes along with that position. I’m not saying she was wrong to do that, because there was really no way I could have kept up. If she had asked me, I would have insisted I could do it all – and then I would have been in no shape to be actually at the wedding. I can honestly say – denial is a big part of my coping technique. So, in a nutshell, she was absolutely right – but I’m still sitting here a week later cursing my body. Time to move on.
I can still hear my Mother’s voice saying in the most baby-ish way ‘oh, you must be sooo tired!’ Because that’s apparently the only reason I’m allowed to be grouchy – it’s not because nobody will let me do anything. It’s not because I can’t even parent my own kids, or get a glass of water without instruction on how to do it better – it must be my ‘meds’ (oh, how I hate that term, it sounds so… patient-hip).
I feel caught between two worlds, the world where I’m physically not capable of doing things and must ask for help, and the world where people want to do things for me because they love me. I know I should be appreciative, but at some point I become a walking illness and no longer me anymore. I’m feeling less like an invalid and more like I’m in-valid. I suppose what the difference is – people wouldn’t do these things if I weren’t in this physical situation. Which is why it doesn’t bother me when my husband does stuff like getting me drinks or bringing my dinner – he did that when I was well. I know I can tell him to stop – I want to do it myself! He won’t get a case of the hurt feelings and mope.
I’m not a charity case, I’m just a person. Please treat me that way. Be nice to me because I’m me, not because I’m a walking illness – Don’t pity me. I hate pity.
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