You happy cry giving people the good news.
Let me back up.
This past month, I have been feeling really good. I hesitated to say I was feeling back to normal, particularly because part of healing for me has been accepting my "new normal." Normal is not a constant state of being. Essentially, normal does not exist.
Also, the last time I thought I was nearing normalcy, I received the news that my prolactin was elevated again so I really did not want to get my hopes up too high (and risk having them come crashing back down).
But I have still been feeling good. I am finding that I'm able to toelrate more and more in terms of physical activity and social engagements. I am taking on more projects at home and not finding them too overwhelming after my work days. Work itself has not been completely depleting me of my energy stores (most days). My anxiety is low and my panic attacks have become non-esistent.
With all this in mind, I headed into my appointment with my endocrinologist this past Tuesday, April 18. I was feeling mostly positive with a small shadow in the back of my mind. It is hard not to worry sometimes.
My endo was very thorough, going through my history and asking about how my other follow-up appointments had been going. She asked how my periods have been. To be honest, they have been getting more and more regular since December and I can almost predict when they are going to occur now. My only concern in this regard has been that they have been extremely heavy and last a lot longer than I'm used to. My endo explained that these are probably my "usual periods" (boo) now that my prolactin levels are normal, since high prolactin typically causes irregular periods in women.
Did you catch that? Because I sure did: my prolactin levels are NORMAL. (I guess in this case normalcy does exist.)
What. A. Relief.
So that's what lead to my happy crying - although that could have been due to my friend starting to cry and then trying to awkwardly hug me when I told her the news.
I haven't really stopped smiling since.
Priscilla truly is dead.
Saturday 22 April 2017
Friday 10 March 2017
Finding Motivation in the Diagnosis that Keeps Trying to Break Me
Something bad or unexpected happens in your life. You get angry, sad, anxious, depressed,
worried... But, eventually the shock wears away and you are able to get on with your
life. You have accepted this
situation. You have learned from
it. Everything is good again. And once you're good, you're good forever. This is exactly how it’s going to be…right?
Originally, this is what I believed. I had come to realize that what will be will be. I was in a good place. I had accepted that I had a pituitary tumour and that my hormones were out of whack. I had come to terms with needing to have brain surgery and then needing to recover from surgery. And after surgery, by last August/September I felt great and was ready to move on with my life, Priscilla free. No need to continue fretting about it.
But then life threw me another curve ball. My prolactin levels were elevated, again. I was ANGRY. I was distressed. I worried that it meant that my tumour was growing back and that I will not be able to have children. I wondered why this was happening to me.
Part of my emotional/mental healing during this most recent battle has been
finding support systems with people going through similar situations. I have an amazing network of friends and
family who love me and support me, but it’s hard to not have people to talk to
who inherently know what I am facing. There
are, unfortunately, no in-person support groups in Brandon right now (maybe
something for me to look into developing in the future!) and I do not think I
would be up for travelling to Winnipeg right now for their support group
meetings once a month. Instead, I took
advantage of online support systems such as looking into what the Brain Tumour
Foundation of Canada has to offer, finding blogs and reaching out to their
authors, and joining several Facebook support groups. This was honestly the best thing I could have
done. My only regret is that I didn't look into this earlier.
I am feeling much less alone now. I no longer feel like what I am going through is abnormal. These groups are full of people who understand what I am feeling and seem to provide unconditional support and validation of my concerns. I have also been able to provide my support and experiences to others which, for me, is another huge healing factor.
I am still uncertain about where I stand on several topics relating to “the meaning of life,” but something that I have always kept with me is the belief that everything happens for a reason. Though I still haven’t completely made sense of why Priscilla happened to me, I am trying to apply my experiences and thoughts to my day to day life. I find that I now have a better appreciation of all the little things in life: how beautiful and peaceful nature is, how happy my dogs’ unconditional love makes me feel, how delighted I am just seeing the joy of my friends and family, how amazing it makes me feel to do good things for others…
I am also finding that I can easily let go of the insignificant things that used to make me so unhappy: no longer being able to fit my favourite pair of jeans (who needs pants anyways), not having a spotless house (dust/fur bunnies are my new pets), someone being rude to me (maybe they were having a bad day and yelling at me made them feel better)…
A significant application of my experience with Priscilla has definitely been at the workplace. I find that I am better able to relate to my patients’ experiences and this has helped me be more empathetic. Being able to provide support and understanding to people going through a terrifying journey makes the work I do much more fulfilling.
Right after our wedding, we took off on our honeymoon through Western
Canada. It was a beautiful trek including
so many amazing experiences. I
completed many challenging hikes which was a huge accomplishment. I also faced a lot of my fears head on during
this trip, tackling heights and enclosed spaces by hiking on mountains and
bridges as well as exploring underground caves.
It was a much needed getaway.
Originally, this is what I believed. I had come to realize that what will be will be. I was in a good place. I had accepted that I had a pituitary tumour and that my hormones were out of whack. I had come to terms with needing to have brain surgery and then needing to recover from surgery. And after surgery, by last August/September I felt great and was ready to move on with my life, Priscilla free. No need to continue fretting about it.
But then life threw me another curve ball. My prolactin levels were elevated, again. I was ANGRY. I was distressed. I worried that it meant that my tumour was growing back and that I will not be able to have children. I wondered why this was happening to me.
 |
I ended up putting all of my negative emotions aside and focused on the
positive stuff I had going on in my life.
I was getting married, then going on a two week honeymoon through
Western Canada. Rob told me that if we couldn't have kids, we would just adopt more dogs! I was able to appreciate
the day to day beauty of life. So I was
back to acceptance, and things were good again!
Generally I am a very hopeful and positive person, but I am also very much a realist and value knowledge, particularly when it applies to my health. I know what the possibilities are which is positive in allowing me to know what to keep an eye out for, but also negative if I focus too much on what can go wrong.
I recently found myself in a really dark place again (so confusing, I thought I had accepted my circumstances!). I could not sleep. I could barely get myself through my work days, never mind anything else I had scheduled for the evenings. On weekends where I had no plans, I would spend the majority of my days in bed. This was largely a reaction to feeling physically unwell again: I have started getting headaches and migraines again (though much less frequently than pre-surgery), experiencing ++nausea daily and sensitivity to light and smells. The fatigue has not been getting steadily better as it was late last year; if anything, it feels like I’m regressing in that area. I’m pretty sure I have been grieving the person I was before Priscilla. I used to be active and healthy. I used to be “invincible.”
I have also been tired of having to deal with this illness: the worry that’s always in the back of my mind, the physical effects of it, the follow up appointments that I need to go to every 3-4 months for the REST OF MY LIFE. I just did not want to do it anymore.
Generally I am a very hopeful and positive person, but I am also very much a realist and value knowledge, particularly when it applies to my health. I know what the possibilities are which is positive in allowing me to know what to keep an eye out for, but also negative if I focus too much on what can go wrong.
I recently found myself in a really dark place again (so confusing, I thought I had accepted my circumstances!). I could not sleep. I could barely get myself through my work days, never mind anything else I had scheduled for the evenings. On weekends where I had no plans, I would spend the majority of my days in bed. This was largely a reaction to feeling physically unwell again: I have started getting headaches and migraines again (though much less frequently than pre-surgery), experiencing ++nausea daily and sensitivity to light and smells. The fatigue has not been getting steadily better as it was late last year; if anything, it feels like I’m regressing in that area. I’m pretty sure I have been grieving the person I was before Priscilla. I used to be active and healthy. I used to be “invincible.”
I have also been tired of having to deal with this illness: the worry that’s always in the back of my mind, the physical effects of it, the follow up appointments that I need to go to every 3-4 months for the REST OF MY LIFE. I just did not want to do it anymore.
 |
But what other choice do I have? I can’t
just stay in bed forever and hide from the world.
I was recently told “It’s okay to have bad days, but try not to stay there.” This was the gentle nudge I needed to get myself out of my slump. I have realized that the stages of managing a chronic health issue are cyclical and endless. For that reason, I know I’m on a lifetime journey of giving myself permission to feel angry and to feel sad, but then finding ways to pull myself back up again.
I was recently told “It’s okay to have bad days, but try not to stay there.” This was the gentle nudge I needed to get myself out of my slump. I have realized that the stages of managing a chronic health issue are cyclical and endless. For that reason, I know I’m on a lifetime journey of giving myself permission to feel angry and to feel sad, but then finding ways to pull myself back up again.
 |
I am feeling much less alone now. I no longer feel like what I am going through is abnormal. These groups are full of people who understand what I am feeling and seem to provide unconditional support and validation of my concerns. I have also been able to provide my support and experiences to others which, for me, is another huge healing factor.
I am still uncertain about where I stand on several topics relating to “the meaning of life,” but something that I have always kept with me is the belief that everything happens for a reason. Though I still haven’t completely made sense of why Priscilla happened to me, I am trying to apply my experiences and thoughts to my day to day life. I find that I now have a better appreciation of all the little things in life: how beautiful and peaceful nature is, how happy my dogs’ unconditional love makes me feel, how delighted I am just seeing the joy of my friends and family, how amazing it makes me feel to do good things for others…
I am also finding that I can easily let go of the insignificant things that used to make me so unhappy: no longer being able to fit my favourite pair of jeans (who needs pants anyways), not having a spotless house (dust/fur bunnies are my new pets), someone being rude to me (maybe they were having a bad day and yelling at me made them feel better)…
A significant application of my experience with Priscilla has definitely been at the workplace. I find that I am better able to relate to my patients’ experiences and this has helped me be more empathetic. Being able to provide support and understanding to people going through a terrifying journey makes the work I do much more fulfilling.
 |
Finding some motivation in my life has been essential to keeping me going
forward. I think last year when my life
could have easily fallen apart with the recent diagnosis of a tumour and
subsequently needing surgery, I was able to keep going because I had so many
things to work on. The big one was
recovering from brain surgery (getting my strength back, making it through all
the sinus crusting – so gross – and navigating taste and smell changes).
I was in the process of completing my Bachelor of Science Degree in Radiation Therapy and actually wrote a take home final exam the week after my surgery. I then started taking a required online stats class less than a month after my surgery because it was only going to be offered online this one time and it was the final class I needed for my degree.
7 weeks after surgery I returned to work full-time. This is a decision I somewhat regret because the first few months back were hell for me. I was not eating or sleeping well due to side effects from the steroid I had been taking and going back to work took a lot out of me.
Last summer I had my brother’s wedding to prepare for. I was in the wedding party so I took part in the bachelorette party, making decorations and decorating the hall in the days leading up to the wedding, as well as the rehearsal and the full day of the wedding. As tiring as all of this was, I wouldn't trade those moments for anything.
In the same month as my brother’s wedding, I also started to play ultimate Frisbee again. I had been slowly increasing my activity level and thought I was ready. I had warned my team that I likely would not be able to play the entire game and that the other women would need to play more in order to give me a rest in between points. During the first game, my legs gave out at one point and I fell to the ground. I made progress every week and by the end of the season was able to get through a full game with no issues.
After that, I had my own wedding to prepare for. Thankfully we had opted for a small, simple wedding which did not require too much work and I was able to not stress about it too much. It was such a beautiful, intimate day that I will remember forever because I married my best friend who has been by my side, never wavering, every day in this journey.
I was in the process of completing my Bachelor of Science Degree in Radiation Therapy and actually wrote a take home final exam the week after my surgery. I then started taking a required online stats class less than a month after my surgery because it was only going to be offered online this one time and it was the final class I needed for my degree.
7 weeks after surgery I returned to work full-time. This is a decision I somewhat regret because the first few months back were hell for me. I was not eating or sleeping well due to side effects from the steroid I had been taking and going back to work took a lot out of me.
Last summer I had my brother’s wedding to prepare for. I was in the wedding party so I took part in the bachelorette party, making decorations and decorating the hall in the days leading up to the wedding, as well as the rehearsal and the full day of the wedding. As tiring as all of this was, I wouldn't trade those moments for anything.
In the same month as my brother’s wedding, I also started to play ultimate Frisbee again. I had been slowly increasing my activity level and thought I was ready. I had warned my team that I likely would not be able to play the entire game and that the other women would need to play more in order to give me a rest in between points. During the first game, my legs gave out at one point and I fell to the ground. I made progress every week and by the end of the season was able to get through a full game with no issues.
After that, I had my own wedding to prepare for. Thankfully we had opted for a small, simple wedding which did not require too much work and I was able to not stress about it too much. It was such a beautiful, intimate day that I will remember forever because I married my best friend who has been by my side, never wavering, every day in this journey.
 |
| Stolen Moments |
 |
 |
 |
This year, I have not had much in the way of obligations. At first I was so excited about all my free
time (so much Netflix!), but I quickly realized that not having projects on the go does not work for
me. I need long term goals to move
towards, or I quickly lose my inspiration to do anything.
I decided to sign up for the Brain Tumour Walk in Winnipeg this year which will be occurring June 24 (3 days after my birthday!). I already have a large group of family and friends who will be joining me to walk that day as well as collect donations on my behalf. This walk is important to me because I am giving back to the Brain Tumour Foundation of Canada which has been a huge resource for me and so many others. In a way, it’s helping me feel less helpless. I am also excited for the day of the walk because it will potentially give me a chance to connect with other brain tumour survivors. (If anyone is interested in donating to the walk through my team, Breanne's Brain Tumour Battlers, you can do this online here: http://btfc.convio.net/site/TR/SpringSprint/General?pg=team&fr_id=1400&team_id=5163)
I decided to sign up for the Brain Tumour Walk in Winnipeg this year which will be occurring June 24 (3 days after my birthday!). I already have a large group of family and friends who will be joining me to walk that day as well as collect donations on my behalf. This walk is important to me because I am giving back to the Brain Tumour Foundation of Canada which has been a huge resource for me and so many others. In a way, it’s helping me feel less helpless. I am also excited for the day of the walk because it will potentially give me a chance to connect with other brain tumour survivors. (If anyone is interested in donating to the walk through my team, Breanne's Brain Tumour Battlers, you can do this online here: http://btfc.convio.net/site/TR/SpringSprint/General?pg=team&fr_id=1400&team_id=5163)
 |
Other goals I have set for myself include building up my physical activity
tolerance. I know that I need to listen
to my body and not overdo it, but I do want to get back at least
part of who I used to be. I am going to
look into exercise programs that might benefit me.
I also have some personal projects that I want to start doing to fully redefine who I am. I used to have many hobbies and interests that I loved which ended up being put aside when I was in school and working full time. I am excited to get back into my art – including painting, sketching, and music – and working on outdoor projects.
I think a big advantage to going through everything I have with a tumour and brain surgery is that I finally feel like I can give myself permission to do the things that make me happy, say no to the things that don’t, and fully live my life the way I see fit with no guilt or regrets. There is a freedom in this view that I never would have gotten without Priscilla. So I guess I need to thank her for that.
I also have some personal projects that I want to start doing to fully redefine who I am. I used to have many hobbies and interests that I loved which ended up being put aside when I was in school and working full time. I am excited to get back into my art – including painting, sketching, and music – and working on outdoor projects.
I think a big advantage to going through everything I have with a tumour and brain surgery is that I finally feel like I can give myself permission to do the things that make me happy, say no to the things that don’t, and fully live my life the way I see fit with no guilt or regrets. There is a freedom in this view that I never would have gotten without Priscilla. So I guess I need to thank her for that.
 |
Tuesday 7 February 2017
10 Months Post-Surgery: Fatigue
Fatigue – what a misunderstood symptom/side effect. Everyone knows what it’s like to feel
tired. We all have those days where
maybe we did not sleep well the night before or we have had a crazy/hectic day
at work and feel like a nap is in order.
And that’s what people often associate with fatigue. I know I did prior to my tumour diagnosis and
subsequent surgery. I would educate my
patients who were receiving radiation therapy about fatigue without fully understanding
what it was.
All of that has changed for me now.
Fatigue, the way I experience it, is more than feeling the need to sleep. First of all, it comes on suddenly and is not always related to how much I have exerted myself. Sleeping does not improve it, although the amount of much sleep I get can impact the severity. My fatigue is experienced through weakness in my legs, feeling like my limbs are extremely heavy, having a hard time concentrating on anything, feeling irritable, having difficulty making decisions, loss of motivation/interest, and – the most ironic one – sleeplessness. That’s right. My fatigue has been making it harder for me to sleep.
This symptom has been affecting many parts of my life, such as personal relationships, my social life, and my general quality of life because I feel like I am not able to do as much as I think I should be capable of. Part of this is due to fatigue being so hard to explain. How can someone who has never experienced fatigue understand that I may or may not be interested in hanging out with them depending on how I’m feeling that day? How can my husband understand that the reason I don’t want him (or anyone) around really has nothing to do with him/how I feel about him? How do I accept that I am not a failure when I have days I literally cannot get out of bed? I always feel awful afterwards, but how long will people continue to accept my apologies? How long do I have to wait to feel “normal” again? And, really, what the heck is normal anymore?
I have had a hard time accepting that this is still a symptom related to my surgery because that was now ten months ago. However, the more people I speak to who have had brain surgery, the more I am beginning to realize that the healing process can take a long time, even after all the other side effects have begun to subside. Even after I look completely fine (although, let’s be honest, people told me I looked great a week after my surgery since I don’t have any scars to show) and people can easily forget that I had brain surgery.
Coping with fatigue has meant learning the different types of fatigue (cognitive/mental or physical), figuring out what my triggers are, and understanding my personal limits. I have had both cognitive and physical fatigue, although it tends to lean more towards the cognitive. This means that social interactions/mental work are worse for me than physical activity. That's not to say that I don't also experience the physical fatigue, though.
I have been able to manage walking to and from work plus walking the dogs and doing other types of activity such as yoga and volleyball fairly well for several months now, so I thought it was time to start adding more. I, unfortunately, started pushing myself too much with scheduling too many activities in one week or trying to add in more intensity and my body finally told me “NO” last weekend. We went snow shoeing on Saturday, travelling a distance of approximately 3 km (this is not a long distance for me, whatsoever, since my walks to and from work usually total 3 km). That evening, my body became incredibly weak and I was so mentally drained that I could not really focus on anything and could barely drag myself up the stairs to bed that night. At 9 PM. On a Saturday.
Knowing my limits has become an integral part of managing my fatigue. I make a conscious effort to plan out my weeks regularly and set realistic goals for myself. This includes not scheduling too many activities into one day/evening, prioritizing activities, asking for help with certain things, and being okay with things that are less important maybe not happening (or happening at another time) if I do not feel up to it.
Keeping my activity level in the gentle to moderate range is something that is recommended, but I have had a hard time with this. I was an incredibly active person prior to surgery (played volleyball two nights a week, played ultimate Frisbee one night a week, walked most places, walked my dogs, did weight workouts whenever I could fit them into my schedule, etc.). Accepting that I am not back at that place yet is difficult. There are times when I feel great and can handle something a little more intense, but I need to be careful that I am not doing too high intensity too often.
All of that has changed for me now.
Fatigue, the way I experience it, is more than feeling the need to sleep. First of all, it comes on suddenly and is not always related to how much I have exerted myself. Sleeping does not improve it, although the amount of much sleep I get can impact the severity. My fatigue is experienced through weakness in my legs, feeling like my limbs are extremely heavy, having a hard time concentrating on anything, feeling irritable, having difficulty making decisions, loss of motivation/interest, and – the most ironic one – sleeplessness. That’s right. My fatigue has been making it harder for me to sleep.
 |
| Fatigue |
This symptom has been affecting many parts of my life, such as personal relationships, my social life, and my general quality of life because I feel like I am not able to do as much as I think I should be capable of. Part of this is due to fatigue being so hard to explain. How can someone who has never experienced fatigue understand that I may or may not be interested in hanging out with them depending on how I’m feeling that day? How can my husband understand that the reason I don’t want him (or anyone) around really has nothing to do with him/how I feel about him? How do I accept that I am not a failure when I have days I literally cannot get out of bed? I always feel awful afterwards, but how long will people continue to accept my apologies? How long do I have to wait to feel “normal” again? And, really, what the heck is normal anymore?
I have had a hard time accepting that this is still a symptom related to my surgery because that was now ten months ago. However, the more people I speak to who have had brain surgery, the more I am beginning to realize that the healing process can take a long time, even after all the other side effects have begun to subside. Even after I look completely fine (although, let’s be honest, people told me I looked great a week after my surgery since I don’t have any scars to show) and people can easily forget that I had brain surgery.
Coping with fatigue has meant learning the different types of fatigue (cognitive/mental or physical), figuring out what my triggers are, and understanding my personal limits. I have had both cognitive and physical fatigue, although it tends to lean more towards the cognitive. This means that social interactions/mental work are worse for me than physical activity. That's not to say that I don't also experience the physical fatigue, though.
I have been able to manage walking to and from work plus walking the dogs and doing other types of activity such as yoga and volleyball fairly well for several months now, so I thought it was time to start adding more. I, unfortunately, started pushing myself too much with scheduling too many activities in one week or trying to add in more intensity and my body finally told me “NO” last weekend. We went snow shoeing on Saturday, travelling a distance of approximately 3 km (this is not a long distance for me, whatsoever, since my walks to and from work usually total 3 km). That evening, my body became incredibly weak and I was so mentally drained that I could not really focus on anything and could barely drag myself up the stairs to bed that night. At 9 PM. On a Saturday.
 |
| Snowshoeing: my new winter sport! |
Knowing my limits has become an integral part of managing my fatigue. I make a conscious effort to plan out my weeks regularly and set realistic goals for myself. This includes not scheduling too many activities into one day/evening, prioritizing activities, asking for help with certain things, and being okay with things that are less important maybe not happening (or happening at another time) if I do not feel up to it.
Keeping my activity level in the gentle to moderate range is something that is recommended, but I have had a hard time with this. I was an incredibly active person prior to surgery (played volleyball two nights a week, played ultimate Frisbee one night a week, walked most places, walked my dogs, did weight workouts whenever I could fit them into my schedule, etc.). Accepting that I am not back at that place yet is difficult. There are times when I feel great and can handle something a little more intense, but I need to be careful that I am not doing too high intensity too often.
 |
| Winter Walking FTW! |
Diet is incredibly important, and I feel like I have been really good about this one. Eating lots of fruit and vegetables, whole grains and adequate amounts of protein is recommended. I also eat small amounts often (mostly out of necessity due to my history with gastric issues). This helps to regulate my blood sugar levels and prevent low points.
Managing other issues – such as vitamin and mineral deficiencies – is important. I do think that part of my fatigue is related to my low iron levels, so I have been doing everything I can to remember to take my iron supplements when I am supposed to. I also plan to speak to my physician at my follow up appointment about whether or not I should increase my supplement at times when I would be losing more iron than usual (menstruating is a pain – in more ways than one).
Keeping the mind active – through puzzles and art – is something that I have yet to try to see if it will help with my cognitive fatigue. It is something I am definitely interested in trying, especially because I want to get back to my art projects that I put aside many years ago while going to school.
Managing stress and anxiety is something that I have been working on and, though I feel like I have made a lot of progress, I have been finding myself taking many steps back in this regard. My panic attacks were always at their worst when I was not sleeping after surgery and I have not been sleeping well for the past couple of months (partially because of my increased anxiety and panic attacks). It seems like an unending, vicious cycle at times. I am trying anything and everything to improve my sleep because I think it will make a world of difference. At this point, I have reduced my caffeine and sugar intake and completely cut out alcohol. I try not to nap during the day and avoid television/my phone for 1-2 hours before bed. I have been trying to include relaxing activities for at least an hour before bed (yoga poses, taking baths, reading, etc.). I use aromatherapy in the form of lavender scents in oils and sprays. I also have a white noise machine to fall asleep to.
As a last resort, I still take Gravol to help me fall asleep and keep me asleep. This is something I have been trying to avoid, though, because I am hoping to have children within the next couple of years and if I become pregnant, I should try to avoid Gravol.
I worry that I will never get back to “how I was.” I asked Rob what we are going to do if this is the best that it gets for me. His response was that maybe my attitude towards is not right and that I should try to stay positive. He said it almost sounded like I was giving up.
Although this really upset me in the moment – This whole process has not been easy! How dare he say that I am giving up when I have been working so hard! I'm allowed to have bad moments! – I do see where he is coming from. Thinking that this is how things are going to be for me, forever, honestly makes everything seem pointless. I am going to keep trying to take everything one day at a time. Looking back, I can still see all the improvements I have made. And I am hopeful that in another couple of months, I will be able to look back and see even more progress. I need to be, because otherwise it means that Priscilla has won. And that biotch can’t win.
At least I have these comfy dog pillows to rest on.
Diet is incredibly important, and I feel like I have been really good about this one. Eating lots of fruit and vegetables, whole grains and adequate amounts of protein is recommended. I also eat small amounts often (mostly out of necessity due to my history with gastric issues). This helps to regulate my blood sugar levels and prevent low points.
Managing other issues – such as vitamin and mineral deficiencies – is important. I do think that part of my fatigue is related to my low iron levels, so I have been doing everything I can to remember to take my iron supplements when I am supposed to. I also plan to speak to my physician at my follow up appointment about whether or not I should increase my supplement at times when I would be losing more iron than usual (menstruating is a pain – in more ways than one).
Keeping the mind active – through puzzles and art – is something that I have yet to try to see if it will help with my cognitive fatigue. It is something I am definitely interested in trying, especially because I want to get back to my art projects that I put aside many years ago while going to school.
Managing stress and anxiety is something that I have been working on and, though I feel like I have made a lot of progress, I have been finding myself taking many steps back in this regard. My panic attacks were always at their worst when I was not sleeping after surgery and I have not been sleeping well for the past couple of months (partially because of my increased anxiety and panic attacks). It seems like an unending, vicious cycle at times. I am trying anything and everything to improve my sleep because I think it will make a world of difference. At this point, I have reduced my caffeine and sugar intake and completely cut out alcohol. I try not to nap during the day and avoid television/my phone for 1-2 hours before bed. I have been trying to include relaxing activities for at least an hour before bed (yoga poses, taking baths, reading, etc.). I use aromatherapy in the form of lavender scents in oils and sprays. I also have a white noise machine to fall asleep to.
As a last resort, I still take Gravol to help me fall asleep and keep me asleep. This is something I have been trying to avoid, though, because I am hoping to have children within the next couple of years and if I become pregnant, I should try to avoid Gravol.
I worry that I will never get back to “how I was.” I asked Rob what we are going to do if this is the best that it gets for me. His response was that maybe my attitude towards is not right and that I should try to stay positive. He said it almost sounded like I was giving up.
Although this really upset me in the moment – This whole process has not been easy! How dare he say that I am giving up when I have been working so hard! I'm allowed to have bad moments! – I do see where he is coming from. Thinking that this is how things are going to be for me, forever, honestly makes everything seem pointless. I am going to keep trying to take everything one day at a time. Looking back, I can still see all the improvements I have made. And I am hopeful that in another couple of months, I will be able to look back and see even more progress. I need to be, because otherwise it means that Priscilla has won. And that biotch can’t win.
At least I have these comfy dog pillows to rest on.
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| Sadie Pillow |
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| Hershi Pillow |
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