Top Photo - Mom at Dad's birthday dinner May 26thMiddle Photo - Merrie at the hospital balcony on the 9th floor (my room was on the 10th)
Bottom Photo - My sister Michelle outside before Merrie's visit May 18th
I want to take a moment to acknowledge the incredible contributions to my care that my mother, sister, and friend and trainer Merrie Vieco have made to make this surgery experience more comfortable for me. Yes, sorry if I will be bragging a little bit. I confess they have totally pampered and spoiled me but my pupose in telling you is not to gloat. Firstly, I want them to know how much I really do appreciate them and secondly I think it is important to tell you so that family and friends of other patients get an idea of the sort of things they can do to feel helpful.
Let's start off with Easter. That was leading up to my surgery by only a few weeks. As a family we eelebrate that holiday and fully partake in traditional festivities. So there is the egg decorating, hunting, and of course the easter baskets. I asked to not have candy in mine this year so my mother and sister included goodies that I could use and some of them applied to the upcoming surgery experience and my planned longer stay in Oregon for recovery at my parent's home.
Off the bat, one of the first goodies in the Easter basket from my sister was a gorgeous seaside puzzle of a painting by Christian Lassen (the Hawaii surfer artist) that I would never find the time at home to piece together but would be a perfect brain mapping and repair project to work on in the weeks of my recovery at home. Get this......I even have my own special glass puzzle table in my mom's craft room that she found at Good Will during my visit to attend the pre-op appt at the end of April. So while my mom works at her desk making cards, I can be working on my puzzle in the same room with her.
Another goodie sis had in my basket was an inspirational bookmark telling me to "Believe". Aside from just believing I was going to live and get througth the surgery, I have had some discouraging complications which really require hope and a positive attitude to persevere. At my celebration of life party, both mom and sis gave me some books so I definitely found use for the bookmark to go with them.
In the Easter basket from mom I got a nice brush which I left down here for my return which is working great for coming through my wet hair with ease and not hurting the incision area. The stick of deoderant was nice too and I actually needed some as the stick I brought ran out. More hair bands to keep my hair out of my eyes which can cause me to get vertigo have been nice too.
My family unexpectedly showered me with gifts when we celebrated my life the day before surgery. I have VERY dry skin and taking the medicine can dry it out too. Mom brought me some special miracle skin cream that I lotioned up with well the day before surgery and afterward as the day of surgery you can wear NOTHING - no lotion, perfume, or even deoderant.
I also have trouble with dry mouth and dry lips. Mom bought me a special bottle of dry mouth flouride rinse which I have used daily. I was pretty lucky this time but the first time I vomited continuously and was not able to brush my teeth immediately. So we wanted to be sure we could remedy that problem should it happen again. Mom also got me a little travel size ziplock pouch of trial size toiltries and sis also got me a ziplock pouch of special burt's bees trial size products with special lip balm and dry skin cream.
Passing the time and relaxing your inner psyche......
It is common with brain surgery to have vision problems. Therefore, I do not do any watching tv much and I am limited on the amount of reading I can do. While in the hospital either my patience can only tolerate reading short phrases or I can only look at pictures because of double vision and difficulty reading letters in words. Mom gave me a book of whitty quotes and a picture relaxation gift book of puppy photos while sis gave me a beautiful nature photography book of the state of Washington.
In the hospital, I had brought with me a huge Planet Ocean photography book my sister gave me one Christmas and a thick coffee table book of National Geographic's best photography that Merrie and Pedro actually gave me for Christmas. So I was well stocked!!! Part of my recovery is that I need to sleep better. So my instructions are not to read any really heavy thinking material before bed. I alternate looking at all these books! They are a perfect way for me to unwind and just empty my mind of thoughts and just let my visual system take ovcr focusing on beauty and wonder.
By the way, the dog book was great to browse through when I got to take my first bath! Sis is just too good to me! A few days after I was home she mailed me a package of goodies from Bath and Body Works of the new scent, Country Chic, that I was complimenting her on when she was wearing the perfume at the beach house. So just when it is about time that I can take a bath and use my own soap, I get a bottle of bubble bath in the new scent with perfume and lotion to match in the mail! Too sweet, eh?!
Cheering up
At my party the day before, mom and sis gave me flowers and balloons to later bring to my hospital room once out of ICU. Michelle and DJ also had a flower arrangement of sunny roses and daisy's delivered to the room. And mom being the card making diva expert, has made me a collection of beautiful cards that I have adorning the windowsills. She gives me a card everyday. I will be sure to share some pictures of her lovely creations.
Little bit of info on Merrie.........
She is my trainer at Gold's gym who has gone WAY above and beyond running a half marathon with me and even traveling all the way to Africa to accompany me on a climb of the mountain Kilimanjaro. Although I began training before my first surgery, the training was really intended to give me an extra edge with my performance as a charity athlete and to help with overcoming my balance challenges. We had NO IDEA I was going to be having surgery again so soon and how beneficial this training would be at making me as strong as I could be to tolerate surgery, persevere, shorten recovery, make my recovery easier, and be able to bounce back quickly.
Let's start off with Easter. That was leading up to my surgery by only a few weeks. As a family we eelebrate that holiday and fully partake in traditional festivities. So there is the egg decorating, hunting, and of course the easter baskets. I asked to not have candy in mine this year so my mother and sister included goodies that I could use and some of them applied to the upcoming surgery experience and my planned longer stay in Oregon for recovery at my parent's home.
Off the bat, one of the first goodies in the Easter basket from my sister was a gorgeous seaside puzzle of a painting by Christian Lassen (the Hawaii surfer artist) that I would never find the time at home to piece together but would be a perfect brain mapping and repair project to work on in the weeks of my recovery at home. Get this......I even have my own special glass puzzle table in my mom's craft room that she found at Good Will during my visit to attend the pre-op appt at the end of April. So while my mom works at her desk making cards, I can be working on my puzzle in the same room with her.
Another goodie sis had in my basket was an inspirational bookmark telling me to "Believe". Aside from just believing I was going to live and get througth the surgery, I have had some discouraging complications which really require hope and a positive attitude to persevere. At my celebration of life party, both mom and sis gave me some books so I definitely found use for the bookmark to go with them.
In the Easter basket from mom I got a nice brush which I left down here for my return which is working great for coming through my wet hair with ease and not hurting the incision area. The stick of deoderant was nice too and I actually needed some as the stick I brought ran out. More hair bands to keep my hair out of my eyes which can cause me to get vertigo have been nice too.
My family unexpectedly showered me with gifts when we celebrated my life the day before surgery. I have VERY dry skin and taking the medicine can dry it out too. Mom brought me some special miracle skin cream that I lotioned up with well the day before surgery and afterward as the day of surgery you can wear NOTHING - no lotion, perfume, or even deoderant.
I also have trouble with dry mouth and dry lips. Mom bought me a special bottle of dry mouth flouride rinse which I have used daily. I was pretty lucky this time but the first time I vomited continuously and was not able to brush my teeth immediately. So we wanted to be sure we could remedy that problem should it happen again. Mom also got me a little travel size ziplock pouch of trial size toiltries and sis also got me a ziplock pouch of special burt's bees trial size products with special lip balm and dry skin cream.
Passing the time and relaxing your inner psyche......
It is common with brain surgery to have vision problems. Therefore, I do not do any watching tv much and I am limited on the amount of reading I can do. While in the hospital either my patience can only tolerate reading short phrases or I can only look at pictures because of double vision and difficulty reading letters in words. Mom gave me a book of whitty quotes and a picture relaxation gift book of puppy photos while sis gave me a beautiful nature photography book of the state of Washington.
In the hospital, I had brought with me a huge Planet Ocean photography book my sister gave me one Christmas and a thick coffee table book of National Geographic's best photography that Merrie and Pedro actually gave me for Christmas. So I was well stocked!!! Part of my recovery is that I need to sleep better. So my instructions are not to read any really heavy thinking material before bed. I alternate looking at all these books! They are a perfect way for me to unwind and just empty my mind of thoughts and just let my visual system take ovcr focusing on beauty and wonder.
By the way, the dog book was great to browse through when I got to take my first bath! Sis is just too good to me! A few days after I was home she mailed me a package of goodies from Bath and Body Works of the new scent, Country Chic, that I was complimenting her on when she was wearing the perfume at the beach house. So just when it is about time that I can take a bath and use my own soap, I get a bottle of bubble bath in the new scent with perfume and lotion to match in the mail! Too sweet, eh?!
Cheering up
At my party the day before, mom and sis gave me flowers and balloons to later bring to my hospital room once out of ICU. Michelle and DJ also had a flower arrangement of sunny roses and daisy's delivered to the room. And mom being the card making diva expert, has made me a collection of beautiful cards that I have adorning the windowsills. She gives me a card everyday. I will be sure to share some pictures of her lovely creations.
Little bit of info on Merrie.........
She is my trainer at Gold's gym who has gone WAY above and beyond running a half marathon with me and even traveling all the way to Africa to accompany me on a climb of the mountain Kilimanjaro. Although I began training before my first surgery, the training was really intended to give me an extra edge with my performance as a charity athlete and to help with overcoming my balance challenges. We had NO IDEA I was going to be having surgery again so soon and how beneficial this training would be at making me as strong as I could be to tolerate surgery, persevere, shorten recovery, make my recovery easier, and be able to bounce back quickly.
At my last training session the week we left for Oregon, Merrie gave me a gift certificate for a massage with Yoko at the gym spa who is AMAZING! What an incredibly great idea to get a relaxing massage before surgery that I never thought of! I have never done that before and if ever again, I will DEFINITELY do so! It was perfect and in fact, I think I could use one again when I get back.
Merrie and I work a lot on balance, core, leg strength, and upper body strength. We have been training together for a year and I am incredibly amazed at how strong I have been for this surgery, that I did not become weakened at all, and how soon I have been up walking and for long periods of time ON HILLS daily so soon after a major brain surgery. It is astounding! I am wearing my parents out because they do not want me walking alone and thus either need to go with me. hehe
Wednesday (only 2 days after surgery), I was up out of my bed wandering around the hospital disappearing from my room for lengths at time in the afternoon. As soon as I could, I wanted to go to the garden area outside on the 8th floor. I was hanging out with sis and mom when Harley went missing for a long time telling nobody where he went. After coming inside, I talked my sister into sitting in the lounge area next to the big glass picture windows looking out at Mt. Hood and looking through my books.
While I was sitting there, Harley appeared with my surprise! It was Merrie!!! She took the train down to come visit me and Harley went to the station to pick her up. What a fantastic treat! :) And of course she also brought me goodies! The first prize she pulled out of her bag was a nice soft pillow doll, OX, suitably with an expression of going through a hard time too. LOL It is hard to explain and you will understand when I show you a picture. Anyway, it is awesome I sleep with it every night! One night at home my mom peeped her head into my room through a doorway I was not expecting to see someone late at night which scared me half to death! I screamed in bloody terror as I clutched my pillow doll to protect me. It was pretty funny!
Merrie and I LOVE chocolate! So she got me 2 bars of specialty chocolate, fig and fennel dark chocolate and dark chocolate with butter toffee. Back at the room, I immediately broke into it and popped a square in my mouth. :D Merrie finds such unique things. She also gave me a box of homeopathic candy losenges for repair and healing which are great to take for my leg that has suffered a painful hematoma with neuralgia of the skin and brain health supplements to get my focus and cognitive function back on track. Finally, the last treat was a green tea healing garden set in matching scent of shower gel, lotion and body spray which was WONDERFUL after not being able to wear any scents for a couple days. Since being discharged, I have been greatly enjoyng showers with the fresh scent of the shower gel and smelling good with the body spray!
My beautiful ladies are so fabulous! Oh yeah, in addition to showering me with gifts mom and sis are always taking turns at the hospital so someone is with me. They have done this for 3 surgeries now THROUGHOUT THE NIGHT. In addition, they have given me massages, rubbed my head, combed my hair, washed my hair, painted my nails and mom has cooked, cleaned, washed my laundry, taken me shopping, and brought me to appts.
For my last surgery, my mother-in-law Cheryl is another lovely lady who flew out from Minnesota to stay with us for my first couple weeks of recovery helping me with my medicine schedule, helping us with my first days of being home, making sure my dogs were fed and Harley had what he needed each day, driving me around everywhere and going for walks. In addition to my mom and Harley, she has also accompanied me on one of my NIH visits assisting me with getting around and coordinating travel.
Thank you so much ladies for being a crucially important part of my life and helping me get through these battles with NF2!
Motivation
Lastly, I will leave you with one of my favorite quotes inscribed on a plaque my sister gave me in the hospital with a picture of a forest resembling one of my favorite hiking trails in the area.
"What lies behind us and what lies before us, are small matters compared to what lies within us." - Ralph Waldo Emerson
Merrie and I work a lot on balance, core, leg strength, and upper body strength. We have been training together for a year and I am incredibly amazed at how strong I have been for this surgery, that I did not become weakened at all, and how soon I have been up walking and for long periods of time ON HILLS daily so soon after a major brain surgery. It is astounding! I am wearing my parents out because they do not want me walking alone and thus either need to go with me. hehe
Wednesday (only 2 days after surgery), I was up out of my bed wandering around the hospital disappearing from my room for lengths at time in the afternoon. As soon as I could, I wanted to go to the garden area outside on the 8th floor. I was hanging out with sis and mom when Harley went missing for a long time telling nobody where he went. After coming inside, I talked my sister into sitting in the lounge area next to the big glass picture windows looking out at Mt. Hood and looking through my books.
While I was sitting there, Harley appeared with my surprise! It was Merrie!!! She took the train down to come visit me and Harley went to the station to pick her up. What a fantastic treat! :) And of course she also brought me goodies! The first prize she pulled out of her bag was a nice soft pillow doll, OX, suitably with an expression of going through a hard time too. LOL It is hard to explain and you will understand when I show you a picture. Anyway, it is awesome I sleep with it every night! One night at home my mom peeped her head into my room through a doorway I was not expecting to see someone late at night which scared me half to death! I screamed in bloody terror as I clutched my pillow doll to protect me. It was pretty funny!
Merrie and I LOVE chocolate! So she got me 2 bars of specialty chocolate, fig and fennel dark chocolate and dark chocolate with butter toffee. Back at the room, I immediately broke into it and popped a square in my mouth. :D Merrie finds such unique things. She also gave me a box of homeopathic candy losenges for repair and healing which are great to take for my leg that has suffered a painful hematoma with neuralgia of the skin and brain health supplements to get my focus and cognitive function back on track. Finally, the last treat was a green tea healing garden set in matching scent of shower gel, lotion and body spray which was WONDERFUL after not being able to wear any scents for a couple days. Since being discharged, I have been greatly enjoyng showers with the fresh scent of the shower gel and smelling good with the body spray!
My beautiful ladies are so fabulous! Oh yeah, in addition to showering me with gifts mom and sis are always taking turns at the hospital so someone is with me. They have done this for 3 surgeries now THROUGHOUT THE NIGHT. In addition, they have given me massages, rubbed my head, combed my hair, washed my hair, painted my nails and mom has cooked, cleaned, washed my laundry, taken me shopping, and brought me to appts.
For my last surgery, my mother-in-law Cheryl is another lovely lady who flew out from Minnesota to stay with us for my first couple weeks of recovery helping me with my medicine schedule, helping us with my first days of being home, making sure my dogs were fed and Harley had what he needed each day, driving me around everywhere and going for walks. In addition to my mom and Harley, she has also accompanied me on one of my NIH visits assisting me with getting around and coordinating travel.
Thank you so much ladies for being a crucially important part of my life and helping me get through these battles with NF2!
Motivation
Lastly, I will leave you with one of my favorite quotes inscribed on a plaque my sister gave me in the hospital with a picture of a forest resembling one of my favorite hiking trails in the area.
"What lies behind us and what lies before us, are small matters compared to what lies within us." - Ralph Waldo Emerson
1 comment:
You are so blessed to have such an amazing support system in place Beck!
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