We tried to go to Salt Spring Island this past Saturday. My photo group was going for the morning market and I hadn't been in a couple years, and I thought it would be a good day trip for the family. So Andrew worked the evening on my flex day so he could sleep from 1am-7am and then we got up for the 9am ferry on the Saturday. I already wasn't feeling great in the morning, but I felt like it was just from getting up early (after not going to bed early enough) and not eating something right away. So on we went.
The kids were a little bit whiney but not too bad. Andrew was a bit cranky from the week of minimal sleep. And I was hurting. The kids wanted McDonalds or Starbucks but we were running pretty tight on time for making the 9am ferry so I said no. The ferry is a small one, no services, no food, but only 35 mins. Plus a 20min drive to the upper island where the market is. We met my photo group almost immediately and began checking out the market and taking pictures at 10am. The photo group agreed to meet up for lunch at noon. This felt like forever away to me. I was feeling sore and uncomfortable and hungry. Plus it was cold and drizzling rain a little bit and we have nowhere indoors to sit and rest. Even the restaurant the photo group had chosen looked super busy and like my family of six wouldn't fit, let alone the other six in the group. After an hour I was done. I was spiralling because I felt like I just wanted to be at home in bed and I had dragged Andrew and all the kids out here for this "fun day trip" that I was about to bail on. We tried buying food at Thriftys and some snacks from the market, but ultimately I decided to go for the 11:50am return ferry because I just couldn't wait for the next one at 1:50pm. I hid my tears the whole way home but I cried all afternoon and into the evening about ruining everyone's day and bailing on my group without saying goodbye and how if I can't cope with Salt Spring, how was I ever going to cope with DisneyWorld or Paris?
(also - I have rebooked the Paris hotel for November 2019, when Kyle will be there for business in case anything happens with me, but I haven't yet booked the airfare, I'm waiting for answers or an entire month without issues)
Sunday and Monday were better. I did my usual things, I was off work both days. I took the kids to their activities and school and took photos and edited photos, and felt more myself. I had diarrhea both mornings but otherwise, everything was pretty normal.
But today, oh today. I woke up a bit sore, but also quite nauseous and tired and sad right from the outset. It reminded me of when I used to work night shifts and your body clock is so off that your emotions are all over the place and you feel physically sick from lack of sleep. I had a good night's sleep, so I don't think that's what it was, but that's what it felt like.
Did I have a bad sleep? Is it because I ate crap food the night before (homemade doughnuts and popcorn right before bed)? Is it because my menstrual cycle is ending? Is it just a random coincidence and a bad day?
All morning I wasn't sure how long I'd last. I walked to work, slowly. I tried a croissant on my break at 9am. Still not sure if that was going to help me feel better or make me feel worse. I took an Excedrin for the pain. I got through my morning meetings (ending at 11:30am) and said I was going to go home at noon. By noon I wasn't quite as bad, but still not great. So I tried eating lunch (a bento box at Azuma) and did not feel well sitting in the restaurant at all. Walked back to work so I could check my email and then go home at 1pm, but then I got distracted dealing with some things and it was almost 2pm. And I figured if I could make it another 2hrs, that'd be the workday. So I found things to do standing up that didn't make my stomach so uncomfortable and by this point, my nausea had subsided substantially so I stayed. Walking home I cried about how I never know how I will feel day-to-day and how unreliable that makes me feel and how much I hate to "flake out" like that. Still having pain while walking home let the tears flow a lot freer; it's hard to snap yourself out of a pity party when you're hurting.
I got home to no one home, remembered that Andrew had all the girls at Keida's student-led conference that I was missing and cried some more.
I'm feeling in a better mood now as I write this, and it's almost as if all of this happened a while ago rather than earlier today.
I guess the hardest part of all of this is the emotional part. I mean, it sucks to have random, sometimes significant pain that can't be relieved on a daily basis. And it really sucks when there's nausea or headaches with it as well. I honestly have no idea how people with chronic pain or those battling long term illnesses like cancer cope. This has only been six months and has been comparatively pretty mild, but I'm just crumbling.
But the worst part is in my mind. Feeling like I'm letting people down. Like I'm letting my kids down. Like I'm letting my spouse down. Like I'm letting my coworkers, my boss, and my team at work down. Like I'm putting all of my duties and obligations onto the shoulders of others. Like I am not living my life as I knew it. That I may never be able to travel again, which is such a huge part of where I thought my future would be (I had planned to go on at least one special solo travel trip with all of my kids, Keida's last fall to Paris was supposed to be the first).
It's reassuring to be able to go to work and attend the kids' activities and event and I am so grateful to be able to do that at all after experiencing not being able to last fall.
But I still, somehwat selfishly, want to do more. I hate to say it's not enough, but it's not enough. I'm terrified and filled with anxiety about even going camping at French Beach this summer. It's out of cell range and there's no electricity or hot water. What if I have anotehr Salt Spring moment while we're there? I'm trying to reassure myself that I can just go to bed in the tent if needed. But the anxiety and the fear and the pre-emptive guilt is very real.
I'm also struggling with the idea that my stressing about how I might feel day-to-day is actually making me feel worse.
I'm going to wait to talk to the OB/Gyn about the hormonal birth control pills, and see if that improves my mood as well. But honestly, if it doesn't I make take my GP up on that anti-depressant suggestion from November. On Saturday I almost reached out to a counselling service and I think I might use the one offered through my work as well. It's probably not a very promising sign if I can cry just thinking about how I'm feeling....
I think I may be dealing with depression from dealing with chronic pain. And just the thought of that makes me even more sad.
Tuesday, April 16, 2019
January to April
It's been a long time since I posted. Almost three months.
I'm struggling. Not in general, and not every day; If you asked me this time last week I would've been pretty positive and upbeat. But I'm in an emotional valley right now.
Summary of the last three months and elaboration of my emotional state below:
I went back to the GP a week after my January appointment because my headaches hadn't gotten any better. He basically said "well if they haven't gotten worse, that's a good sign!" and left it at that. I felt deceived. Last time he made it sound like if they hadn't gone away, there would be more investigating to do. So I left and I cried.
I've only seen him once since for my pre-op assessment for my laparoscopy (more on that below), which was hugely uneventful.
I went back to the Naturopath on Jan 30th and he said headaches can definitely be caused by or made worse by the Zaxine. He said it could be a die-off effect. He gave me some other herbs that cost a chunk of change, and a prescription for some other drug for constipation to "get things moving" but said not to fill it unless the headaches subsided as it can also cause headaches. I took the herbs but I never went back. I got the feeling he was very fixated on Sibo/IBS and bowel health and I don't really feel like that's what's happening. I've not had any kind of follow up call or check in from them so I guess it was for the best.
I saw the OB/Gyn on Jan 31st. He was GREAT. I didn't have to convince him even a little bit about my pain, he understood from the outset and was kind and reassuring and not at all dismissive. Although he did no physical exam at all, he said he had reviewed all my files from the hospital, he outlined all the usual reasons for pelvic pain and why or why not he thought that reason applied to me. He said he thought it could be endometriosis or scar tissue/adhesions. Both of which can only be diagnosed by diagnostic laparoscopy, neither show up on ultrasounds etc. So would I like to do that? I almost burst into tears of happiness. Yes! I would like any kind of option that brings me closer to answers! Bring on the surgery, let's get rollin'! So we agreed and my surgery date was settled a few days later as March 28th. I was feeling very positive about this.
Back to the headaches. Acupuncture wasn't helping the headaches. In fact, they were getting worse with a swollen/strangling feeling in the front sides of my neck sometimes. My acupuncturist suggested a massage therapist. I saw Lauren for the first time on February 27th and it was FANTASTIC. She spent almost an hour on my neck. Said my neck and scalp were super tight. She also massaged my TMJ joints including inside my mouth. She gave me some stretches to try and tips like soaking in an Epsom salt bath with my neck fully submerged or trying mustard seeds heated up on my neck. I saw her a couple times plus a chiro she recommended (Dan at Fix). The chiropractor wasn't as helpful with the headaches but did definitely improve my range of motion and loosened me up overall.
Since seeing Lauren my headaches have been much better and far less frequent, and I can usually feel the tension coming on in my neck and work on stretching and massaging and heating before it becomes an issue. I also bought a foam roller because a friend had said it helped him with knots in his neck after a car accident. Well, it does, but it really hurts the day after. And as weird as the headaches were (so different from my typical headaches) I do think now that they were/are likely tension headaches, either from the stress of this illness or stress at work, I'm not sure. But not a brain tumour. Like I was having nightmares about.
I also tried cupping form my acupuncturist and wow! I loved it so much! I'm not sure if it really did anything for my abdo/pelvic pain or for my headaches, but it felt SO good. Very similar to a massage.
I went in for my laparoscopy on March 28th. You have to fast beforehand, not a lot, like from midnight, but by noon I was so tired and hungry and my pelvis hurt and I had a killer headache. So I went into it hurting and a bit emotionally overwhelmed but hopeful that because I was having symptoms right then and there, that something would be inflamed enough to be found.
Well, nope. I came out of anesthesia with no pain, headache gone, and a handwritten note "All went well. No complications. All looks normal. No endometriosis. No scar tissue." and a date of April 18th for my follow-up appointment.
This was so disheartening. I wasn't glued to the idea that I had endometriosis, but I thought, especially being symptomatic in the waiting room, that there would be SOMETHING found. But no. So crushing. So now I still have to wait two more days to see where to go from here.
I thought "well, maybe it's just hormonal, maybe I should see about going back on oral birth control to see if that will help regulate my hormone levels and help my pain and my emotions surrounding my pain." But recently, I'm not so sure.
I'm struggling. Not in general, and not every day; If you asked me this time last week I would've been pretty positive and upbeat. But I'm in an emotional valley right now.
Summary of the last three months and elaboration of my emotional state below:
I went back to the GP a week after my January appointment because my headaches hadn't gotten any better. He basically said "well if they haven't gotten worse, that's a good sign!" and left it at that. I felt deceived. Last time he made it sound like if they hadn't gone away, there would be more investigating to do. So I left and I cried.
I've only seen him once since for my pre-op assessment for my laparoscopy (more on that below), which was hugely uneventful.
I went back to the Naturopath on Jan 30th and he said headaches can definitely be caused by or made worse by the Zaxine. He said it could be a die-off effect. He gave me some other herbs that cost a chunk of change, and a prescription for some other drug for constipation to "get things moving" but said not to fill it unless the headaches subsided as it can also cause headaches. I took the herbs but I never went back. I got the feeling he was very fixated on Sibo/IBS and bowel health and I don't really feel like that's what's happening. I've not had any kind of follow up call or check in from them so I guess it was for the best.
I saw the OB/Gyn on Jan 31st. He was GREAT. I didn't have to convince him even a little bit about my pain, he understood from the outset and was kind and reassuring and not at all dismissive. Although he did no physical exam at all, he said he had reviewed all my files from the hospital, he outlined all the usual reasons for pelvic pain and why or why not he thought that reason applied to me. He said he thought it could be endometriosis or scar tissue/adhesions. Both of which can only be diagnosed by diagnostic laparoscopy, neither show up on ultrasounds etc. So would I like to do that? I almost burst into tears of happiness. Yes! I would like any kind of option that brings me closer to answers! Bring on the surgery, let's get rollin'! So we agreed and my surgery date was settled a few days later as March 28th. I was feeling very positive about this.
Back to the headaches. Acupuncture wasn't helping the headaches. In fact, they were getting worse with a swollen/strangling feeling in the front sides of my neck sometimes. My acupuncturist suggested a massage therapist. I saw Lauren for the first time on February 27th and it was FANTASTIC. She spent almost an hour on my neck. Said my neck and scalp were super tight. She also massaged my TMJ joints including inside my mouth. She gave me some stretches to try and tips like soaking in an Epsom salt bath with my neck fully submerged or trying mustard seeds heated up on my neck. I saw her a couple times plus a chiro she recommended (Dan at Fix). The chiropractor wasn't as helpful with the headaches but did definitely improve my range of motion and loosened me up overall.
Since seeing Lauren my headaches have been much better and far less frequent, and I can usually feel the tension coming on in my neck and work on stretching and massaging and heating before it becomes an issue. I also bought a foam roller because a friend had said it helped him with knots in his neck after a car accident. Well, it does, but it really hurts the day after. And as weird as the headaches were (so different from my typical headaches) I do think now that they were/are likely tension headaches, either from the stress of this illness or stress at work, I'm not sure. But not a brain tumour. Like I was having nightmares about.
I also tried cupping form my acupuncturist and wow! I loved it so much! I'm not sure if it really did anything for my abdo/pelvic pain or for my headaches, but it felt SO good. Very similar to a massage.
I went in for my laparoscopy on March 28th. You have to fast beforehand, not a lot, like from midnight, but by noon I was so tired and hungry and my pelvis hurt and I had a killer headache. So I went into it hurting and a bit emotionally overwhelmed but hopeful that because I was having symptoms right then and there, that something would be inflamed enough to be found.
Well, nope. I came out of anesthesia with no pain, headache gone, and a handwritten note "All went well. No complications. All looks normal. No endometriosis. No scar tissue." and a date of April 18th for my follow-up appointment.
This was so disheartening. I wasn't glued to the idea that I had endometriosis, but I thought, especially being symptomatic in the waiting room, that there would be SOMETHING found. But no. So crushing. So now I still have to wait two more days to see where to go from here.
I thought "well, maybe it's just hormonal, maybe I should see about going back on oral birth control to see if that will help regulate my hormone levels and help my pain and my emotions surrounding my pain." But recently, I'm not so sure.
Cupping - March 25th
Post-Op - March 29th
Lap scar in belly button - Apr 9th
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