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Thank you for visiting my page!
Many of you may know me as a family member, friend, peer, lowell community member, but many of you may also remember me as the little girl that the Lowell community came together for to help save my life years ago, even before Pink Arrow was a thing. I was the bald and pudgy two-time childhood cancer survivor. I am very blessed and thankful for the community I was raised in, they are literally a huge part of the reason why I’m still here on this earth today!
I am a survivor and very proud of it however, I’ve never actually been cancer free. Now before you react, let me explain. Cancer is a lifelong sentence, it follows you around for the rest of your life and effects most everything from the day you hear those terrible words, "you have cancer." Many of these larger side effects wait to show up later on down the road, especially as a childhood cancer survivor. I've become very used to finding out different ways cancer has and always will alter my body and life, but recently I faced a side effect that has been a much larger pill for me to swallow.
Many of my cancer's side effects actually come from those harsh meds they had to pump my body full of; even though they saved my life, they left many scars. Two of chemo's biggest side effects in young children is that it halts and alters the growth process of bone structures, and effects the nervous systems ability to work properly. These affects don't show up all at once though. Luckily, I came out of 4 years of harsh chemo and a slight bit of radiation without any neuropathy and seemed to have strong and healthy bones. However, somewhere along the way my nerves and their pain pathways to my brain were slightly altered, but nothing that was super noticeable for a long while. Along with this, over the years of what we thought was proper development in my skeletal structure, my bones in my legs were actually not forming correctly in my hip joints. Other than a few other health problems expected from my chemo and were caught early on, I have been a healthy outgoing young adult women. I was working almost full time while going to school at Grand Valley and living a very active, healthy, and social lifestyle.
Fast forward to a year ago, I woke up on the day before Christmas Eve with excruciating pain in my right hip. I am very much into yoga and aerobics, so we just assumed I had injured myself. However, during a LONG process of elimination, trying to figure out why I was experiencing such pain, we found the altercations in my bone structure which was resulting in many labral tears. A surgeon went in to fix the labral tears, but the pain did not go away after this and had actually been spreading.
Come to later find out, these labral tears in my right hip were just enough to send my nerve/pain processing damage into action resulting in me being diagnosed with the most painful disorder known to man kind called Complex Regional Pain Syndrome, or as many of you hear me refer to it as CRPS/RSD. Through my journey so far it has spread through my entire right side going from the tips of my toes up to the bottom of my right rib cage, and this is on both my back and front side. The nerves are actually also affecting the organs in my abdomen such as my bladder, stomach, bowels, and uterus; without going into too much TMI details some of the things this can cause is chronic nausea, persistent vomiting, bowel and bladder incontinence, bloating, diarrhea, constipation, GERD, extremely painful menses, etc. I’m sure many of you can assume how miserable this can be. And its not only the most excruciating pain itself that i have to deal with, but also CRPS can cause stiffness, muscle spasms and cramps, stabbing, aching, throbbing, numbness, pins and needles, burning, constriction of blood vessels, loss of circulation, swelling, redness, temperature fluctuation, weakness, loss of ability to bear weight, etc. These symptoms also have a hug impact on your mental health and cause a lot of anxiety and depressions. Overall, I’m sure you can all gather the point that this disorder harshly effects my everyday life.
I'm constantly looking for solutions to make living with CRPS a little less difficult, and I do everything in my power to live as close to possible a normal life. However,
CRPS has no cure. I will forever live with this rare disorder, but there are treatment options out there that can help you manage the pain and other symptoms that come with it. But like many chronic illness treatments, they are not covered very well by insurance or in many cases not covered at all. And this is because the treatments will not heal you. CRPS itself cannot kill you even though most days it feels like it just might, however complications for accompanying symptoms and disorders can. It is nicknamed the "suicide disease" because many people would rather die than have to endure the everyday suffering. Many times this results from lack of emotional support or lack of treatment options. Unlike a terminal illness treatment, your not fighting to survive; your fighting to thrive and have a somewhat healthy, well managed lifestyle. So, in other words decisions on treatments pose the questions of if the benefits to my lifestyle outweigh the side effects and harm of the treatments.
To help me coordinate all this, I have a bazillion different doctors to orient my plan of care. I’m on like 11 different medications three times daily not including vitamins and pain meds. Which sometimes the meds have worse side effects than the disorder itself and have caused many physical changes to my body including weight gain, swelling, puffiness, and fluid retention, which as you can imagine is very hard mentally and deteriorating to self esteem to a young adult woman thats supposed to be in her prime, not to mention the uncomfortable pressure and pain these medication effects cause all themselves. I am on CBD and hemp oils, along with creams. I’ve tried medical marijuana and it causes rebound pain which is when the pain doubles in its extremes in presence of certain substances. I’ve tried nerve blocks, but the steroids and the scar tissues caused me more harm than good. I’m in Physical Therapy 1-3 times a week which includes dry needling, mirror therapy, muscle massage, strength and gate training, and yoga. I’ve tried a TENs units, but they drive my nerves crazy and make me want to go insane from the pain. Instead of continuing to bore you with my treatment history, let’s just say I’ve spent a year pushing hard for treatments to work, but have failed.
After these many failed attempts, I have not given up hope, but I'm running out of options that are covered by insurance. My most recent options that were given to me were spinal surgery to implant a spinal cord stimulator or to start ketamine infusions. For many reasons, I’m not ready to go the invasive surgery route with the risk of it not working, causing my pain to spread to other areas of my body, or causing a spinal cord/nerve injury.
I opted to start having ketamine infusions every 1-2 weeks. These infusions have given me a lot of hope! These treatments have allowed me to whiteness for the first time since the beginning of this journey for my pain to have gone down to a 0/10 on the pain scale. The excitement and happiness and overall hope this gave me is too much to even explain! I literally cried to my nurse after finishing the first infusion due to the decrease in my pain levels. However, to get longer than a couple hours of zero pain and a couple days of some slight relief, I have to continue doing these treatments right on schedule every 1-2 weeks until we start seeing longer periods of relief allowing for more spaced out treatments.
Ketamine infusions are one of those CRPS treatments that are not covered by insurance. For one single hour of infusion, it is $350 and it has to be paid at the time of my appointment, and it is an extra $100 for every hour I wanted to lengthen my infusions by. Thus, with this being an every 1-2 week treatment, it’s just not something a 23 year old college student can afford. And on top of that my disorder only allows for me to work a limited part time currently until I can get my CRPS more managed. With this I still have other monthly bills just like everyone else along with a ton of other medical bills on top of that. And then theres the cost of prescriptions and any other medical supplies I need that have to be purchased not only monthly but weekly.
I wouldn’t resort to this unless I absolutely had no other choice. I don’t like asking for help and my friends, family, and community have already helped me so much so early on in life. I hate reaching out again in desperate need, but i'm absolutely miserable every day and this may be my one chance for managing my illness. My parents, and I managed to scrape together enough to trial a first treatment. To be able to afford my last two treatments I was lucky enough to have two very special people in my life that helped me pay for them. I asked for no pain for Christmas, even though I knew id need a christmas miracle, but graciously these two individuals stepped forward to grant my christmas wish.
So, I am graciously reaching out to my peers, family, friends, and community to ask for some assistance to get back to being a somewhat normal 20 something year old girl.
Anything at all helps! And if you can’t financially help, I am also asking for many healing prayers please!
Thank you to everyone that has taken precious time out of your day to read this, it means so much to me! If you have any questions, please contact myself or my family. I greatly appreciate you all for considering to donate, you have no idea how much you are changing my life! You are amazing! Bless each and everyone of you!
I will be posting updates on this page as often as I can after each treatment.
With so much love,
Anna Banana
P.S.
Please please please feel free to reach out at any time with inspiring/motivating words, prayers, good juju, good vibes, positive affirmations, just to chat etc. I love hearing from people, as this disorder makes me feel very lonely and secluded from the world. My mom keeps our house extremely clean and we avoid illnesses at all costs, however I love healthy visitors! I may not always be in a good mood, but don’t feel discouraged by that, I’m still extremely grateful to have people around me. If I’m alone for too long I start to focus too much on the pain, so I push myself to be around others as much as possible to keep my spirits up.
Many of you may know me as a family member, friend, peer, lowell community member, but many of you may also remember me as the little girl that the Lowell community came together for to help save my life years ago, even before Pink Arrow was a thing. I was the bald and pudgy two-time childhood cancer survivor. I am very blessed and thankful for the community I was raised in, they are literally a huge part of the reason why I’m still here on this earth today!
I am a survivor and very proud of it however, I’ve never actually been cancer free. Now before you react, let me explain. Cancer is a lifelong sentence, it follows you around for the rest of your life and effects most everything from the day you hear those terrible words, "you have cancer." Many of these larger side effects wait to show up later on down the road, especially as a childhood cancer survivor. I've become very used to finding out different ways cancer has and always will alter my body and life, but recently I faced a side effect that has been a much larger pill for me to swallow.
Many of my cancer's side effects actually come from those harsh meds they had to pump my body full of; even though they saved my life, they left many scars. Two of chemo's biggest side effects in young children is that it halts and alters the growth process of bone structures, and effects the nervous systems ability to work properly. These affects don't show up all at once though. Luckily, I came out of 4 years of harsh chemo and a slight bit of radiation without any neuropathy and seemed to have strong and healthy bones. However, somewhere along the way my nerves and their pain pathways to my brain were slightly altered, but nothing that was super noticeable for a long while. Along with this, over the years of what we thought was proper development in my skeletal structure, my bones in my legs were actually not forming correctly in my hip joints. Other than a few other health problems expected from my chemo and were caught early on, I have been a healthy outgoing young adult women. I was working almost full time while going to school at Grand Valley and living a very active, healthy, and social lifestyle.
Fast forward to a year ago, I woke up on the day before Christmas Eve with excruciating pain in my right hip. I am very much into yoga and aerobics, so we just assumed I had injured myself. However, during a LONG process of elimination, trying to figure out why I was experiencing such pain, we found the altercations in my bone structure which was resulting in many labral tears. A surgeon went in to fix the labral tears, but the pain did not go away after this and had actually been spreading.
Come to later find out, these labral tears in my right hip were just enough to send my nerve/pain processing damage into action resulting in me being diagnosed with the most painful disorder known to man kind called Complex Regional Pain Syndrome, or as many of you hear me refer to it as CRPS/RSD. Through my journey so far it has spread through my entire right side going from the tips of my toes up to the bottom of my right rib cage, and this is on both my back and front side. The nerves are actually also affecting the organs in my abdomen such as my bladder, stomach, bowels, and uterus; without going into too much TMI details some of the things this can cause is chronic nausea, persistent vomiting, bowel and bladder incontinence, bloating, diarrhea, constipation, GERD, extremely painful menses, etc. I’m sure many of you can assume how miserable this can be. And its not only the most excruciating pain itself that i have to deal with, but also CRPS can cause stiffness, muscle spasms and cramps, stabbing, aching, throbbing, numbness, pins and needles, burning, constriction of blood vessels, loss of circulation, swelling, redness, temperature fluctuation, weakness, loss of ability to bear weight, etc. These symptoms also have a hug impact on your mental health and cause a lot of anxiety and depressions. Overall, I’m sure you can all gather the point that this disorder harshly effects my everyday life.
I'm constantly looking for solutions to make living with CRPS a little less difficult, and I do everything in my power to live as close to possible a normal life. However,
CRPS has no cure. I will forever live with this rare disorder, but there are treatment options out there that can help you manage the pain and other symptoms that come with it. But like many chronic illness treatments, they are not covered very well by insurance or in many cases not covered at all. And this is because the treatments will not heal you. CRPS itself cannot kill you even though most days it feels like it just might, however complications for accompanying symptoms and disorders can. It is nicknamed the "suicide disease" because many people would rather die than have to endure the everyday suffering. Many times this results from lack of emotional support or lack of treatment options. Unlike a terminal illness treatment, your not fighting to survive; your fighting to thrive and have a somewhat healthy, well managed lifestyle. So, in other words decisions on treatments pose the questions of if the benefits to my lifestyle outweigh the side effects and harm of the treatments.
To help me coordinate all this, I have a bazillion different doctors to orient my plan of care. I’m on like 11 different medications three times daily not including vitamins and pain meds. Which sometimes the meds have worse side effects than the disorder itself and have caused many physical changes to my body including weight gain, swelling, puffiness, and fluid retention, which as you can imagine is very hard mentally and deteriorating to self esteem to a young adult woman thats supposed to be in her prime, not to mention the uncomfortable pressure and pain these medication effects cause all themselves. I am on CBD and hemp oils, along with creams. I’ve tried medical marijuana and it causes rebound pain which is when the pain doubles in its extremes in presence of certain substances. I’ve tried nerve blocks, but the steroids and the scar tissues caused me more harm than good. I’m in Physical Therapy 1-3 times a week which includes dry needling, mirror therapy, muscle massage, strength and gate training, and yoga. I’ve tried a TENs units, but they drive my nerves crazy and make me want to go insane from the pain. Instead of continuing to bore you with my treatment history, let’s just say I’ve spent a year pushing hard for treatments to work, but have failed.
After these many failed attempts, I have not given up hope, but I'm running out of options that are covered by insurance. My most recent options that were given to me were spinal surgery to implant a spinal cord stimulator or to start ketamine infusions. For many reasons, I’m not ready to go the invasive surgery route with the risk of it not working, causing my pain to spread to other areas of my body, or causing a spinal cord/nerve injury.
I opted to start having ketamine infusions every 1-2 weeks. These infusions have given me a lot of hope! These treatments have allowed me to whiteness for the first time since the beginning of this journey for my pain to have gone down to a 0/10 on the pain scale. The excitement and happiness and overall hope this gave me is too much to even explain! I literally cried to my nurse after finishing the first infusion due to the decrease in my pain levels. However, to get longer than a couple hours of zero pain and a couple days of some slight relief, I have to continue doing these treatments right on schedule every 1-2 weeks until we start seeing longer periods of relief allowing for more spaced out treatments.
Ketamine infusions are one of those CRPS treatments that are not covered by insurance. For one single hour of infusion, it is $350 and it has to be paid at the time of my appointment, and it is an extra $100 for every hour I wanted to lengthen my infusions by. Thus, with this being an every 1-2 week treatment, it’s just not something a 23 year old college student can afford. And on top of that my disorder only allows for me to work a limited part time currently until I can get my CRPS more managed. With this I still have other monthly bills just like everyone else along with a ton of other medical bills on top of that. And then theres the cost of prescriptions and any other medical supplies I need that have to be purchased not only monthly but weekly.
I wouldn’t resort to this unless I absolutely had no other choice. I don’t like asking for help and my friends, family, and community have already helped me so much so early on in life. I hate reaching out again in desperate need, but i'm absolutely miserable every day and this may be my one chance for managing my illness. My parents, and I managed to scrape together enough to trial a first treatment. To be able to afford my last two treatments I was lucky enough to have two very special people in my life that helped me pay for them. I asked for no pain for Christmas, even though I knew id need a christmas miracle, but graciously these two individuals stepped forward to grant my christmas wish.
So, I am graciously reaching out to my peers, family, friends, and community to ask for some assistance to get back to being a somewhat normal 20 something year old girl.
Anything at all helps! And if you can’t financially help, I am also asking for many healing prayers please!
Thank you to everyone that has taken precious time out of your day to read this, it means so much to me! If you have any questions, please contact myself or my family. I greatly appreciate you all for considering to donate, you have no idea how much you are changing my life! You are amazing! Bless each and everyone of you!
I will be posting updates on this page as often as I can after each treatment.
With so much love,
Anna Banana
P.S.
Please please please feel free to reach out at any time with inspiring/motivating words, prayers, good juju, good vibes, positive affirmations, just to chat etc. I love hearing from people, as this disorder makes me feel very lonely and secluded from the world. My mom keeps our house extremely clean and we avoid illnesses at all costs, however I love healthy visitors! I may not always be in a good mood, but don’t feel discouraged by that, I’m still extremely grateful to have people around me. If I’m alone for too long I start to focus too much on the pain, so I push myself to be around others as much as possible to keep my spirits up.