Just like most of your Facebook and Instagram friends I've been looking back at 2015 and evaluating what's gone on this year. 2015 was harder than I had imagined (I don't think we often imagine a hard upcoming year when talking about New Years resolutions), but it was incredibly rewarding as well. Learning more and more about myself is helping me become more self aware and self confidant. Not exactly the typical "I'm going to travel the world and find myself" year that would have been fun, but at least for now I haven't had much interest in traveling so finding myself from home works.
2015 started off with me being recently diagnosed with P.O.T.S. (Postural Orthostatic Tachycardia Syndrome). I was doing better with being able to walk around the house and such but then went downhill for some reason that I can't quite remember. I'll spare you a long story about the day to day hardship of it all, especially because if you're reading this you may have followed my journey through this very blog, but simply put it got difficult. The good thing about it is that on most days I felt like it was all going to get better just around the corner, which is probably because this is a saying my mom has used for my entire life.
I recently realised two deeply conflicting thoughts that I have about health. First off is that I have, on numerous occasions, forgotten about being sick. I kid you not, I have woken up many a time and started going about my day just to be rudely interrupted by nausea and passing out. I've woken up on the floor of the bathroom completely baffled by passing out, the thought "but I'm not sick!" ringing through my head. Just the other day I tried to pull myself up onto the counter so my dad could wash my hair in the sink (thanks dad:) and ended up laughing so hard at how my arms quivered because I'm much weaker than I had anticipated. There was a time in my life were I was considerably strong, and though that time in comparison was brief I find myself identifying with it more than my weakened state that has been a larger part of my life. The second thought that contradicts the first is that a small part of me worries what my identity will be without sickness. The good part about that is I'm see a future where sickness won't be such a integral part of who I am but, the part I don't love admitting is that in the past it has been. Who will I be without sickness? It may seem silly to worry about but think about losing something about yourself, whether it be good or bad, doesn't it change things? I've been in a role of dependency, a role of only getting to live out parts of my whole self, a role of being a second class citizen to my body's rules. I hope that doesn't sound victimizing or 'oh pity me'. I just mean that there are these parts of who I am that have taken a backseat because of being in survival mode. It's exciting and also a little scary to dig deep into the messy backseat and find those pieces of myself.
This year I feel that I've grown a lot and learned more than I could've imagined. I've been able to reteach myself how to knit and enjoy countless hours of creativity. I've somehow ignited an excitement of learning, especially in the subject of history. I have a deeper testimony in Jesus Christ and my Heavenly Father as I finished the Book of Mormon for the first time. I've come to understand my worth and importance on a deeper level. I have relearned how much I truly love writing and how doing it more is so beneficial to my mental well being. I have a greater appreciation for every good day, every good hour, and every good minute in my life. In short life is good:) So here's to a year of finding/loving/becoming my most authentic self! Bring it on 2016!
Wednesday, December 30, 2015
Saturday, December 26, 2015
T'was a Merry Little Christmas
If you've been following my blog posts in the last few months you'll know that I'm doing much better, it's amazing what retraining your brain will do (NueroFeedback). Thanks to my motivation to watch Ellen almost everyday I've been going downstairs more, even more than once daily somedays:) The past two Sundays I've been able to go to church which I haven't been able to do in about a year. To be honest I was more nervous than I care to admit to do all the socializing that comes with going to church, but it went so well and it was lovely to see all the amazing in my ward who I know have been praying for me. After the first time back I was excited to go back, especially in my new dress.
This year my grandparents on my mothers side were here for the days leading up to the 25th and Christmas Eve for the first time in years. I was so glad to have them around and celebrate with them. My grandpa and I share a really special bond. Maybe it's because whenever we visited his farm as kids I would help him with chores and with the horses, or maybe its because I was crazy enough to get on a horse that hadn't been ridden and got myself bucked off, proving my "spunkiness". No matter the reason, my grandpa and I are very close so when I asked for a Priesthood blessing he gladly obliged. After an amazing blessing I looked up to see tears in my grandpa's eyes, my tough, cowboy, John Wayne loving, 88 year old grandpa who I have only seen cry twice in my life before. Obviously I was crying too as I was able to stand and give my grandpa a hug. Its been years since I've been able to hug him or anyone else while standing. I've found that everyone is shorter than I expected. I stayed up late not because I was too sick to sleep but because I was so well and I didn't want to miss out on it for a second.
On Christmas Eve we always open one present, as many other families do. I had been very sneaky this year about my gifts to my parents and I was so proud of myself. My dad has these 30 year old slippers that my mom's grandma made for him when they were first married. My mom had several pairs of the same slippers over the years but she wore through them faster. My dad's are pretty destroyed but he still wears them. So my mom suggested that I knit him another pair and then in an entirely different conversation my dad suggested that I knit some of the same slippers for my mom. So I proceeded to knit these slippers and keep them a secret from both parents, which was not easy seeing as we all live under the same roof. So I knitted dad's in a cherry red (the same as the ones he had before) while he was at work and mom's in a deep purple in the hours that she was working in the other room from home. I also knitted most of my other gifts that I gave out; a warm headband with a bow for my sister, a beanie for my brother and pair of elf inspired slippers for my sister. For my little brother I got a Good Mythical Morning t-shirt because there wasn't anything much to knit that he would use. When I finished all this knitting I realised that I still had a few weeks until Christmas so I went on to knit another pair of slippers for myself. I wrapped them up and opened them on Christmas Eve after my parents opened theirs first. Normally I wouldn't give myself a present, obviously, but I wanted to wear them on Christmas morning:) Both my mom and my dad were completely surprised and very happy with the slippers. And the other plus was that my grandparents were there to see the slippers inspired by my grandpa's mother, they were pretty surprised by them too. Here's some pictures of mom's slippers and mine as well:
I also had time to make some other stuff as well. I've been making baby booties for awhile so I thought I'd try other baby things because they're easy and quick, so I did some newborn hats, followed by this softie:
After that I went a little further and did a couple baby sweaters! I really like how they turned out, though I'm not quite finished. I still need to add buttons, otherwise those button holes I knitted in them would be a waste. I'm also debating whether or not to add pockets on the beige one...
Lastly I started a baby blanket on the Friday before Christmas and had it done by Tuesday! This picture doesn't really display its size but I think its quite a bit of knitting for 5 days. When it is all laid out it looks like it has some stripes because some rows of the stitches are small and some rows are larger. I tied it up with a red ribbon and will probably keep it in my cedar chest.
This year my grandparents on my mothers side were here for the days leading up to the 25th and Christmas Eve for the first time in years. I was so glad to have them around and celebrate with them. My grandpa and I share a really special bond. Maybe it's because whenever we visited his farm as kids I would help him with chores and with the horses, or maybe its because I was crazy enough to get on a horse that hadn't been ridden and got myself bucked off, proving my "spunkiness". No matter the reason, my grandpa and I are very close so when I asked for a Priesthood blessing he gladly obliged. After an amazing blessing I looked up to see tears in my grandpa's eyes, my tough, cowboy, John Wayne loving, 88 year old grandpa who I have only seen cry twice in my life before. Obviously I was crying too as I was able to stand and give my grandpa a hug. Its been years since I've been able to hug him or anyone else while standing. I've found that everyone is shorter than I expected. I stayed up late not because I was too sick to sleep but because I was so well and I didn't want to miss out on it for a second.
On Christmas Eve we always open one present, as many other families do. I had been very sneaky this year about my gifts to my parents and I was so proud of myself. My dad has these 30 year old slippers that my mom's grandma made for him when they were first married. My mom had several pairs of the same slippers over the years but she wore through them faster. My dad's are pretty destroyed but he still wears them. So my mom suggested that I knit him another pair and then in an entirely different conversation my dad suggested that I knit some of the same slippers for my mom. So I proceeded to knit these slippers and keep them a secret from both parents, which was not easy seeing as we all live under the same roof. So I knitted dad's in a cherry red (the same as the ones he had before) while he was at work and mom's in a deep purple in the hours that she was working in the other room from home. I also knitted most of my other gifts that I gave out; a warm headband with a bow for my sister, a beanie for my brother and pair of elf inspired slippers for my sister. For my little brother I got a Good Mythical Morning t-shirt because there wasn't anything much to knit that he would use. When I finished all this knitting I realised that I still had a few weeks until Christmas so I went on to knit another pair of slippers for myself. I wrapped them up and opened them on Christmas Eve after my parents opened theirs first. Normally I wouldn't give myself a present, obviously, but I wanted to wear them on Christmas morning:) Both my mom and my dad were completely surprised and very happy with the slippers. And the other plus was that my grandparents were there to see the slippers inspired by my grandpa's mother, they were pretty surprised by them too. Here's some pictures of mom's slippers and mine as well:
I also had time to make some other stuff as well. I've been making baby booties for awhile so I thought I'd try other baby things because they're easy and quick, so I did some newborn hats, followed by this softie:
After that I went a little further and did a couple baby sweaters! I really like how they turned out, though I'm not quite finished. I still need to add buttons, otherwise those button holes I knitted in them would be a waste. I'm also debating whether or not to add pockets on the beige one...
Lastly I started a baby blanket on the Friday before Christmas and had it done by Tuesday! This picture doesn't really display its size but I think its quite a bit of knitting for 5 days. When it is all laid out it looks like it has some stripes because some rows of the stitches are small and some rows are larger. I tied it up with a red ribbon and will probably keep it in my cedar chest.
Having grandparents visit, all my siblings including my brother home from Boston and extended family from my dad's side all close by makes it feel so festive! I've already started using some of the gifts I got, and I'm excited for the others. For example I'm typing this on my new laptop (Santa and I went halvsies on a black Friday deal:), listening to Justin Beiber's new album (haters gonna hate...but don't because he's making some great music right now), while breathing in the lovely lavender mist from the oil diffuser I got. All in all it was a very Merry Little Christmas:)
Monday, December 7, 2015
Grey Area
My life has been all sorts of a roller coaster the past couple months. I'm learning so much about myself though. For example I found that I tend to process information in a very black or white, all or nothing kind of way. The grey area is uncomfortable for me, its all that information that doesn't quite have specific place to be organized into, its not neat and tidy and it makes me crazy. I'm also finding out that I am a walking contradiction of myself, along with every other person on this planet. Contradictions bother me and so I've been rather at odds with myself. Here is an example; A person is either well or sick. See, on a logical level I completely disagree with that statement, but when I can't do things I associate with being well or I have to do things that I associate with being sick I feel like I can only be one of those things and for so long I've always been the latter. So I'm wading through this middle ground, this no man's land and I can't label it. I can't sort it into a specific place in my brain. Logically, I know that's fine but at the same time there is this deep, sometimes irrational, need to SORT ALL THE THINGS!!
So when people ask how I'm doing (the people who want to hear more than, "fine, how are you?") I'm not quite sure how to respond. The truth is, physically I'm doing better and I'm incredibly proud of what I've accomplished recently, but it's...different? than I had imagined getting better to be. I had envisioned a staircase that I would gradually ascend over time, occasionally stumbling and having to do some steps over again but all in all I would be going in one solid, defined direction. Instead of that it's been more like the ebb and flow of the ocean. Some high highs and in comparison some low lows.
I realise that all of this confusion and grey area sounds like a negative, or maybe I just interpret it that way because its not a concrete settled thing, but I'm trying to make it a positive. Who else has enough time on their hands to really delve within themselves and find out how to be more in tune with who they are? To find their strengths and weaknesses and make them work to their advantage? Not many people have the opportunity to do what I'm getting to do.
A very wise woman in my ward told me to "create evidence" that I'm getting better. Which is just to say that I have a lot of evidence that I could tell you to prove that I am (or have been) so very ill, but instead of collecting that kind of proof to look at the things I'm able to do that I wasn't able to do before. I've really liked keeping a list in my phone of the little things that many take for granted that I've been able to do recently. It gives me a way to stop and think about the accomplish, remember it better and be grateful for it, however small it may be. It also helps on bad days to look back at this list and remind myself that a bad day doesn't been I'll be sick forever because just look at what I was able to do other days.
I mentioned this last post but one of my goals has been to go downstairs to watch Ellen at least a few times a week at first. I've been pretty good about doing this, which not only makes me super proud of myself, it also motivated me to try to go up and down the stairs twice in one day! Just this seemingly simple thing has opened my life up quite a bit, my world is now twice as big. Proving to myself that I can do the stairs let me be more willing and able to do spontaneous fun things. About a week ago I went on a drive with my dad and little brother to see all the Christmas lights in our neighborhood and surrounding ones as well. It felt so festive and let me just focus on positive things. Today my fun things were, putting on make up and painting my nails. It proved a little difficult to sit up and put on make up and even though my heart rate jumped I was committed to finish. It's nice to do differently things than just laying in bed. I've also been working on Christmas presents and I just finished a Ken Burns on the Roosevelts, which was amazing. If you're ever down and have about 10 hours to spare check it out on Netflix ;)
So that's whats been going on in my life. I hope you all had a happy Thanksgiving and are enjoying a Merry Christmas season!
So when people ask how I'm doing (the people who want to hear more than, "fine, how are you?") I'm not quite sure how to respond. The truth is, physically I'm doing better and I'm incredibly proud of what I've accomplished recently, but it's...different? than I had imagined getting better to be. I had envisioned a staircase that I would gradually ascend over time, occasionally stumbling and having to do some steps over again but all in all I would be going in one solid, defined direction. Instead of that it's been more like the ebb and flow of the ocean. Some high highs and in comparison some low lows.
I realise that all of this confusion and grey area sounds like a negative, or maybe I just interpret it that way because its not a concrete settled thing, but I'm trying to make it a positive. Who else has enough time on their hands to really delve within themselves and find out how to be more in tune with who they are? To find their strengths and weaknesses and make them work to their advantage? Not many people have the opportunity to do what I'm getting to do.
A very wise woman in my ward told me to "create evidence" that I'm getting better. Which is just to say that I have a lot of evidence that I could tell you to prove that I am (or have been) so very ill, but instead of collecting that kind of proof to look at the things I'm able to do that I wasn't able to do before. I've really liked keeping a list in my phone of the little things that many take for granted that I've been able to do recently. It gives me a way to stop and think about the accomplish, remember it better and be grateful for it, however small it may be. It also helps on bad days to look back at this list and remind myself that a bad day doesn't been I'll be sick forever because just look at what I was able to do other days.
I mentioned this last post but one of my goals has been to go downstairs to watch Ellen at least a few times a week at first. I've been pretty good about doing this, which not only makes me super proud of myself, it also motivated me to try to go up and down the stairs twice in one day! Just this seemingly simple thing has opened my life up quite a bit, my world is now twice as big. Proving to myself that I can do the stairs let me be more willing and able to do spontaneous fun things. About a week ago I went on a drive with my dad and little brother to see all the Christmas lights in our neighborhood and surrounding ones as well. It felt so festive and let me just focus on positive things. Today my fun things were, putting on make up and painting my nails. It proved a little difficult to sit up and put on make up and even though my heart rate jumped I was committed to finish. It's nice to do differently things than just laying in bed. I've also been working on Christmas presents and I just finished a Ken Burns on the Roosevelts, which was amazing. If you're ever down and have about 10 hours to spare check it out on Netflix ;)
So that's whats been going on in my life. I hope you all had a happy Thanksgiving and are enjoying a Merry Christmas season!
Thursday, November 26, 2015
Thanksgiving
"When I'm worried and I can't sleep,
I count my blessing instead of sheep,
and I fall asleep counting my blessings."
-Bing Crosby
in White Christmas
Its Thanksgiving today and I can't help thinking what a crazy year it's been. This time last year I was stuck in a hotel in Arizona with my parents as we tried to figure out insurance stuff for my Mayo Clinic visit. It didn't quite feel like Thanksgiving being away from home and the rest of the family, beside it was only about 80 degrees outside and something about that in November feels wrong.
This Thanksgiving was different. I've come to appreciate my family on an even deeper level this year and I felt like I should write it down.
I'm grateful for a mom who has gone above and beyond in all sorts of categories. Who has taken care of me, held my hand through the scariest moments, who has literally picked me up off the floor and help me get a hold of myself, and who has hefted a heavy wheelchair in and out of the car a few times a week so I can go to appointments. I'm grateful for a father who holds the priesthood and can give me blessings, who has washed my hair in the sink when I'm too tired to shower. I'm grateful for a 14 year old brother who has brushed my hair and played countless hours of Candy Crush with me. I'm grateful for an older sister who has come over just to sit with me and keep me company, as we've entertained ourselves with old seasons of Modern Family. I'm grateful for an older brother who calls to check in on me just because, shares fun stories about his life, and sends me articles to read online. I'm grateful for a younger sister who calls while walking on campus and puts a smile on my face with her positivity and fun college stories. I'm grateful for childhood, high school and college besties that have been there through thick and thin.
I'm also grateful for my improving health. Wednesday was the best day I've had yet! I got up and went to my Neurofeedback appointment, followed by going on a fun drive with my mom. Usually that would be all I would be up for doing in a day, most days I get to do one thing but I think that's all changing. After the drive I showered and walked back down the stairs! My new goal is to walk downstairs everyday at 4pm to watch Ellen, and yesterday I got to watch Ellen for the first time in almost a year. It felt like a turning point, so thanks Ellen:) After that I stayed downstairs for five hours for our annual girls night where we watch Little Women. My cousin and uncle stopped by for a visit before I walked up the stairs and finished off the day staying up until 1:30am talking with my little sister.
I know it all sounds cheesy and you may all be annoyed with the month of gratitude Facebook posts but Thanksgiving is all about reminding people to be grateful and even if its just for a month than Thanksgiving is still serving its greatest purpose.
Thursday, October 15, 2015
A New Chapter
October 5th, 2015 felt like a monumental day for me, like things may never be the same. The Bright Eyes song "First Day of My Life" played in my head as I felt the new beginning envelop me.
For the first time my excuse for not posting about something as its happening isn't because I didn't feel well enough to write, its that I wanted to enjoy feeling good. Also I didn't want to get too excited about a treatment after only one session, it could easily be a one time thing, right?
Now after a 4th session I feel like I can share what has brought on this new chapter of healing, Neurofeedback. Neurofeedback (and I apologize if I'm spelling that wrong) is a therapy that they use for all sorts of things; anxiety, ADHD, depression, addictions, PTSD, etc. and because of the last one they often use in it the military. I came across Neurofeedback by reading some article that lead me to another article that lead me to an article about Neurofeedback. About a half an hour after I had been reading about it my mom came in my room and said "have you heard of Neurofeedback?" apparently she has a friend who had her son do the treatments and it really helped his depression. As I started to tell mom I had just been looking into it my dad walks in and asks the same thing! Coincidence? I think not!
What I had gathered from my reading is that they use and EEG (a machine that uses electrodes placed on your head to see brain activity) to map out what your brain is doing and then using some sort of stimulation redirect/retrain your brain. For some reason even though I didn't really get how it worked it just seem to fit. I can't take medication because of my metabolism disorder and I always felt like using a medication was just a band-aide for a deeper problem. The brain is the epicenter of your entire being, nothing happens without it first starting in your brain. You don't feel the pain of a broken arm until your brain tells you to, you don't sweat until your brain tells you to, you don't pass out without that message starting in your brain. With that logic I thought, something is wrong in my brain and what if we could start there instead of skirting around the issue?
We tried to get into the select few places near by that offered Neurofeedback and eventually ended up at a place called Suncrest, which is a counseling center. Let us keep in mind I have been bed ridden since February so almost 9 months, and had only been in a car once in that entire time period. So even though Suncrest is about 10 mins away it was a huge worry for me to be able to get there at all. I had a Priesthood blessing and through some divine help I was able to make it there without passing out. Granted it was difficult but I got there. When we got into the room I couldn't really talk and was shaking but still awake. The therapist said she had been trying to call my mom yesterday so she would know what my story was and how she could help best but my mom had lost her phone or something. As dad started to explain that I have POTS her eyes widened and she said "my daughter has POTS". If you have a bizarre chronic illness you know how rarely people know what your condition is let alone have a really personal connection to it. Nuerofeedback is not exactly famous for working with POTS patients so to hear that this therapist that we just "coincidently" got in with knows what POTS is, has a daughter with it and has treated another person with it is really a miracle. She did the brain mapping (if you are googling Nuerofeedback you can add the term "brain mapping" and it may help) and was surprise to she that I had little to no anxiety lighting up. I attributed that to meditation (thanks Stop, Breath, Think app;). We also learned that my brain is just firing off way to much, and my fight or flight response is out of control (which is usually followed by passing out) and was off the chart they have for normal brains. The therapist said she couldn't cure the POTS but she may be able to help with the symptoms. We headed home and I keep feeling hope and peace all rolled into one. Usually I'm more of a pessimist about treatment plans, better to expect nothing and be surprised if I'm wrong, right? But this time when I started to think that way I just couldn't convince myself not to feel hope.
October 5th: Dad started a new job so it was just mom and I going in to my first treatment appointment. My therapist put on the "thinking cap" (a cap with all the electrodes placed in it) and gave me some ear buds to put in. All that I had to do for the treatment was listen to these weird noises, its not music and its not exactly beeps but a bunch of what seem to be random noises. But there not random, they are set up to catered to exactly what I need and for some reason this brings the brain activity to the correct place. Like leading a camel to water, my brain drank it up it had been deprived for my entire life. About 5 minutes in I began to cry. I was finally okay. It felt like what I would expect a sedative to do but have actually experienced. I went from flushed, shaky, nauseous, and passing out to feeling...normal? I think thats what I was feeling. Normal. Not having to talk myself through every moment of my life. Not having to block out every noise so I could focus on lowering my racing heart rate. It was the biggest sigh of relief I've ever taken.
Since then I've had 4 treatments and I'm going in for my 5th tomorrow. Yesterday after a session I even went on a drive with mom, for fun! Not only that I was able to shower on the same day, even though I had already done A LOT, well by my standards anyway. I'm not the only one to notice either, my parents have noticed a difference and my Psychical Therapist who comes out to our house has notice a HUGE improvement in what I can do and how long I can stand.
This is it guys. It may not cure everything, but all I'm asking for is being able to walk around the house and maybe eventually work out. I'm feeling really hopeful and excited! We even got a new wheelchair that leans back which makes getting to the appointments easier but hopefully I won't need it at some point:)
For the first time my excuse for not posting about something as its happening isn't because I didn't feel well enough to write, its that I wanted to enjoy feeling good. Also I didn't want to get too excited about a treatment after only one session, it could easily be a one time thing, right?
Now after a 4th session I feel like I can share what has brought on this new chapter of healing, Neurofeedback. Neurofeedback (and I apologize if I'm spelling that wrong) is a therapy that they use for all sorts of things; anxiety, ADHD, depression, addictions, PTSD, etc. and because of the last one they often use in it the military. I came across Neurofeedback by reading some article that lead me to another article that lead me to an article about Neurofeedback. About a half an hour after I had been reading about it my mom came in my room and said "have you heard of Neurofeedback?" apparently she has a friend who had her son do the treatments and it really helped his depression. As I started to tell mom I had just been looking into it my dad walks in and asks the same thing! Coincidence? I think not!
What I had gathered from my reading is that they use and EEG (a machine that uses electrodes placed on your head to see brain activity) to map out what your brain is doing and then using some sort of stimulation redirect/retrain your brain. For some reason even though I didn't really get how it worked it just seem to fit. I can't take medication because of my metabolism disorder and I always felt like using a medication was just a band-aide for a deeper problem. The brain is the epicenter of your entire being, nothing happens without it first starting in your brain. You don't feel the pain of a broken arm until your brain tells you to, you don't sweat until your brain tells you to, you don't pass out without that message starting in your brain. With that logic I thought, something is wrong in my brain and what if we could start there instead of skirting around the issue?
We tried to get into the select few places near by that offered Neurofeedback and eventually ended up at a place called Suncrest, which is a counseling center. Let us keep in mind I have been bed ridden since February so almost 9 months, and had only been in a car once in that entire time period. So even though Suncrest is about 10 mins away it was a huge worry for me to be able to get there at all. I had a Priesthood blessing and through some divine help I was able to make it there without passing out. Granted it was difficult but I got there. When we got into the room I couldn't really talk and was shaking but still awake. The therapist said she had been trying to call my mom yesterday so she would know what my story was and how she could help best but my mom had lost her phone or something. As dad started to explain that I have POTS her eyes widened and she said "my daughter has POTS". If you have a bizarre chronic illness you know how rarely people know what your condition is let alone have a really personal connection to it. Nuerofeedback is not exactly famous for working with POTS patients so to hear that this therapist that we just "coincidently" got in with knows what POTS is, has a daughter with it and has treated another person with it is really a miracle. She did the brain mapping (if you are googling Nuerofeedback you can add the term "brain mapping" and it may help) and was surprise to she that I had little to no anxiety lighting up. I attributed that to meditation (thanks Stop, Breath, Think app;). We also learned that my brain is just firing off way to much, and my fight or flight response is out of control (which is usually followed by passing out) and was off the chart they have for normal brains. The therapist said she couldn't cure the POTS but she may be able to help with the symptoms. We headed home and I keep feeling hope and peace all rolled into one. Usually I'm more of a pessimist about treatment plans, better to expect nothing and be surprised if I'm wrong, right? But this time when I started to think that way I just couldn't convince myself not to feel hope.
October 5th: Dad started a new job so it was just mom and I going in to my first treatment appointment. My therapist put on the "thinking cap" (a cap with all the electrodes placed in it) and gave me some ear buds to put in. All that I had to do for the treatment was listen to these weird noises, its not music and its not exactly beeps but a bunch of what seem to be random noises. But there not random, they are set up to catered to exactly what I need and for some reason this brings the brain activity to the correct place. Like leading a camel to water, my brain drank it up it had been deprived for my entire life. About 5 minutes in I began to cry. I was finally okay. It felt like what I would expect a sedative to do but have actually experienced. I went from flushed, shaky, nauseous, and passing out to feeling...normal? I think thats what I was feeling. Normal. Not having to talk myself through every moment of my life. Not having to block out every noise so I could focus on lowering my racing heart rate. It was the biggest sigh of relief I've ever taken.
Since then I've had 4 treatments and I'm going in for my 5th tomorrow. Yesterday after a session I even went on a drive with mom, for fun! Not only that I was able to shower on the same day, even though I had already done A LOT, well by my standards anyway. I'm not the only one to notice either, my parents have noticed a difference and my Psychical Therapist who comes out to our house has notice a HUGE improvement in what I can do and how long I can stand.
This is it guys. It may not cure everything, but all I'm asking for is being able to walk around the house and maybe eventually work out. I'm feeling really hopeful and excited! We even got a new wheelchair that leans back which makes getting to the appointments easier but hopefully I won't need it at some point:)
Wednesday, September 9, 2015
Knitting and Netflix
An amazing thing happened this week, I was able to think. To most people this is something that comes naturally but when you're in survival mode and have chronic brainfog thinking isn't at the top of your list. Yes I can almost always think enough to get me through the day but there's something that feels like its slowing your brain down, so when that clears its amazing!
Since I've been able to think more I've switched from watching movies I've seen a hundred times to documentaries and I've been loving the feeling of learning! So far I've watched one about Leonardo Da Vinci and one about Winston Churchill (both on Netflix, btw). I've found out that I really like history, it's basically just stories about people and I like that. Another movie that I watched was Gifted Hands, about presidential candidate Dr. Ben Carson doing the first ever separation of twins conjoined by the head. There were quite a few surgical scenes that I didn't watch (because ew gross) and it wasn't a documentary but it was still quite interesting (again this one is on Netflix).
The next thing I've been doing is knitting, which has helped me feel like I'm accomplishing something. I found a super easy pattern/tutorial on Pinterest for baby booties and I've been knitting them like crazy. I had to reteach myself (with the help of my mom and Youtube) how to knit but other than that its been simple, which makes it easy to finish in a day. It's nice to be able to hold something and say "I made a thing!". Here's some pictures:
Hopefully all this positivity can continue and I'll be able to do a little more every week:)
Since I've been able to think more I've switched from watching movies I've seen a hundred times to documentaries and I've been loving the feeling of learning! So far I've watched one about Leonardo Da Vinci and one about Winston Churchill (both on Netflix, btw). I've found out that I really like history, it's basically just stories about people and I like that. Another movie that I watched was Gifted Hands, about presidential candidate Dr. Ben Carson doing the first ever separation of twins conjoined by the head. There were quite a few surgical scenes that I didn't watch (because ew gross) and it wasn't a documentary but it was still quite interesting (again this one is on Netflix).
The next thing I've been doing is knitting, which has helped me feel like I'm accomplishing something. I found a super easy pattern/tutorial on Pinterest for baby booties and I've been knitting them like crazy. I had to reteach myself (with the help of my mom and Youtube) how to knit but other than that its been simple, which makes it easy to finish in a day. It's nice to be able to hold something and say "I made a thing!". Here's some pictures:
This is the first one I ever made:)
The booties I've made in the last week or so minus a pair I sent as a baby shower gift.
I plan on making a bunch of the white ones because they are so soft!
I'm super proud of this egg plant purple scarf I knitted over the course of 2 days
because last time I made one it took me a couple of weeks.
I made hot pot holders for my mom's birthday coming up next month,
I may have ruined the surprise but I know she likes them:)
Last week I also came to terms with the fact that my hair was just too long to manage. I couldn't brush it or do it myself and I started to feel like that was rather selfish, so I cut off 8 inches. Here's the ponytail that I'm going to donate to the organization Children With Hair Loss:
Lastly I've had some friends ask about the bed bike that I talked about in my last post. So far I've used it once and it went pretty well. I actually have to lay on the floor to use it because its unstable when I put it on my memory foam topped bed, but the floor is just fine. I might try wearing shoes next time to see if that makes it easier, but so far so good. I decided that since I was taking photos of everything else and you probably don't know what a bed bike looks like I'd give you a little better idea.
Hopefully all this positivity can continue and I'll be able to do a little more every week:)
Friday, August 28, 2015
Fear
This month I’ve been focusing on fear, and although that
doesn’t sound positive, the outcome has been.
It kind of happened by accident, I was talking to my mother and I was
getting more and more frustrated about my life I just started to cry and
ramble. It was then that I realized that
I had at least a decade of pent up fear that I was holding onto, just clenching
onto it and refusing to feel it. Maybe
all the pressure of bottling it up made me burst or maybe I got nervous about
something else and it was the last straw.
No matter what brought it on I was finally “allowed” to admit to how
scared I always am. I say “allow”
because for over ten years I told myself that the fear wasn’t helpful and that
if I looked or acted afraid no doctor would take me seriously.
Its not
that that feeling came out of no where, I had already spent years trying to be
diagnosed and more often then not they would tell me that it was just
anxiety. Hearing that over and over
again was frustrating not only because there is no such thing as “just
anxiety”, it’s a real thing that needs to be taken seriously, but also because
I knew anxiety wasn’t making me pass out or get so sick. So every time I went to the doctor or even
talked to people in general I ended up hiding the fear, like it was a crime to
be scared. I was so determined to be
listened to that I stopped listening to myself; I shoved those fears down
because I was too busy trying to be okay. Having this condition has put me in some scary,
and I would even go as far as saying traumatic, situations. I some what described my most traumatic event
in my post called Type 2 and I’m
still dealing with all that fear. But
the reason I say that the outcome of this has been positive is because I let
some of the fear out and now I’m aware that its there. There are people or doctors who would say
that the fear was keeping me sick and passing out but I just don’t have to care
anymore. Dealing with the fear is part
of the healing because I have spent so much energy keeping that fear
buried. Even if I was doing it
subconsciously it still has taken so much energy that I could’ve been using to
get better.
Since my
realization I’ve been working on handing the fear over to God. We really don’t have much control over what
happens to us in life so hanging onto that sense of control creates frustration
and fear. By letting go, giving God the
fear and trusting in Him to make things okay no matter what happens, I became
liberated. For me its God that has
helped me get over this hurtle and I am so grateful to be working on the next
step in my life. I have so much extra
energy that I’ve put into being creative and feeling alive. I’ve started knitting baby booties just for
fun (and they’ll make good future baby shower gifts). My mom also bought me a bed bike, which is
basically just a stand with pedals that you can set on your bed and cycle
while laying down. I haven’t used it yet
but with my new found energy I feel like I can actually do it now. The exercise is supposed to help P.O.T.S, so
here’s hoping!
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