Donation protected
My name is Nikki (CoyoteWitch on Twitter and Sylvanshine in the gaming sphere) and I'm one-half of the mighty nerd duo Team Jikki (my husband, Jake, is the other half - our friends gave us this name years ago, blame them). For the past two years of my life my health has been in a constant downhill spiral. Eight months after I first got sick in February of 2016, I did my first GoFundMe to help with the initial medical costs that had started to pile up. At the time, I felt like $2k was sure heck of a lot of money. A year and a half later, I can't help but laugh at my past self.
I won't get into specifics about the beginning year (you can read the initial GFM for details about what I thought we were originally dealing with), but to sum up - I got sick and what we thought was a sinus infection ended up being more than we could ever have guessed. I was diagnosed with epilepsy, fibromyalgia, and reactive arthritis in that first year but it wasn't the end of things.
After that first GFM in October 2016, my health continued to decline. When it became apparent that nothing was working on the original diagnoses, my doctors began to send me to second opinions. I began to collect specialists like some people collect baseball cards. Aside from my primary care doctor, I now have a neurologist, hematologist, cardiologist, rheumatologist, allergist, gastroenterologist, and pain management doctor. I see my neurologist, hematologist, and pain doc on a monthly basis (and the others on a 3-6 month schedule). That means way more co-pays than I ever thought imaginable. And a lot of trial medications that sometimes do more harm than good.
As time went on, I began to show some odd symptoms. My memory has become increasingly smaller (I have to write down everything now or have my husband keep track of things), my seizures started getting worse, and worst of all, I began to slowly lose mobility and strength in my knees and lower back. This last thing has caused more anxiety in my life than anything else ever has. In January of 2017, I had to start renting a wheelchair to get around and in April I bought my own. It has now been one year with my wheelchair and, while it's taken me a long time to get to this mindset, I'm thankful I have it. Without it, I could not leave the house and it affords me a freedom that I otherwise wouldn't have.
In April 2017, my neurologist decided to test my copper levels as my memory was becoming increasingly worse. What she found surprised her - my levels were three times higher than what was considered normal. Almost immediately, everyone began to suspect I had Wilson's Disease, but when I was tested to confirm this, the test results came back the exact opposite of what it should have been. I was sent to my gastro to confirm. He also suspected WD and ran the same tests as well as a liver biopsy. Again it came back abnormal but not WD. I was "diagnosed" with Hypercupremia, a fancy word for copper poisoning. I use quotes because hypercupremia isn't an actual disorder - it's a symptom of a larger problem.
My gastro was at a loss as to what was causing it and I was sent over to a hematologist at the Austin Cancer Center who had some experience with copper disorders. We ruled out environmental factors immediately - whatever was happening was my body's doing. He ran another liver biopsy (as well as a TON of other tests and scans including my fourth MRI), discovered my copper levels were continuing to rise, and, after spending months trying to pinpoint what I had, he actually came into the room, sat down, put his head in his hands and said "I don't know. You're officially a medical mystery."
It is now May of 2018. A full year later. This past year has been hospital stays, tests, scans, a slew of different medications, and so many doctor appointments that to be honest it's all just a blur. Near the end of 2017, after running test after test attempting to find the cause of the toxic copper levels, the symptoms of hypercupremia got so severe that my doctors had to switch from finding the cause to treating the symptoms instead. I was on two months of high zinc treatments and then another month of chelation treatment that left me so sick I couldn't move and eventually culminated in a week-long hospital stay at the end of last month (including a CT scan, an endoscopy, and numerous blood tests that showed infections in both kidneys). We have yet to see if any of that has worked to decrease the copper toxicity in my body. I have four doctors appointments in the next few weeks, one of which will hopefully tell us if the chelation treatment made a dent on the copper. If it did, then the plan is to continue to bring it down to a normal level and then go back to finding the underlining cause before the levels begin to rise again.
At this point in time, I am still unable to walk, my memory issues are worse than ever, I suffer from audio hallucinations and hearing loss, I've been losing my hair, and I have severe tachycardia even at rest. I rarely go through a day without a three hour nap but rarely have good sleep. My hands constantly shake and my anxiety has never been higher. I struggle with every day things like opening a plastic bottle or taking a shower by myself or even sitting upright in a chair for long periods of time. While my seizures have grown fewer with medication, I still battle with migraines and neurological issues (sometimes I can't get my body to do what I want it to like try to pick up a cup or move my leg into a different position). I'm also able to manage my pain thanks to medication but there are days my whole body shakes from spasms. I have been unable to work or even drive in two years and my husband has had to bear the burden of trying to pay the copious amounts of medical bills on top of both of our various every day bills/loans/credit card payments.
Which is why we are asking for help.
My medical bills have become a towering shadow over our lives, especially with my most recent hospital stay. Without insurance or adjustments, it would have been over $56k. Thankfully with insurance, it'll only be about $8-9k but with the previous medical debt, as well as medication, copays costs, and upcoming appointments, we're setting this goal at $10k with hopes that it won't be more than that. (If by some miracle we make more than that, it'll go to all upcoming/future medical expenses. This journey isn't over yet.)
If you're able to help, even if it's just to share this page, we greatly appreciate it. It has been a very long journey and the path to recovery is still ahead of us. I'm grateful for my husband and our many friends and for all of you for just reading my story. You have my endless gratitude.
Thank you for helping us get through this rough time.
Love,
Nikki & Jake of Team Jikki
I won't get into specifics about the beginning year (you can read the initial GFM for details about what I thought we were originally dealing with), but to sum up - I got sick and what we thought was a sinus infection ended up being more than we could ever have guessed. I was diagnosed with epilepsy, fibromyalgia, and reactive arthritis in that first year but it wasn't the end of things.
After that first GFM in October 2016, my health continued to decline. When it became apparent that nothing was working on the original diagnoses, my doctors began to send me to second opinions. I began to collect specialists like some people collect baseball cards. Aside from my primary care doctor, I now have a neurologist, hematologist, cardiologist, rheumatologist, allergist, gastroenterologist, and pain management doctor. I see my neurologist, hematologist, and pain doc on a monthly basis (and the others on a 3-6 month schedule). That means way more co-pays than I ever thought imaginable. And a lot of trial medications that sometimes do more harm than good.
As time went on, I began to show some odd symptoms. My memory has become increasingly smaller (I have to write down everything now or have my husband keep track of things), my seizures started getting worse, and worst of all, I began to slowly lose mobility and strength in my knees and lower back. This last thing has caused more anxiety in my life than anything else ever has. In January of 2017, I had to start renting a wheelchair to get around and in April I bought my own. It has now been one year with my wheelchair and, while it's taken me a long time to get to this mindset, I'm thankful I have it. Without it, I could not leave the house and it affords me a freedom that I otherwise wouldn't have.
In April 2017, my neurologist decided to test my copper levels as my memory was becoming increasingly worse. What she found surprised her - my levels were three times higher than what was considered normal. Almost immediately, everyone began to suspect I had Wilson's Disease, but when I was tested to confirm this, the test results came back the exact opposite of what it should have been. I was sent to my gastro to confirm. He also suspected WD and ran the same tests as well as a liver biopsy. Again it came back abnormal but not WD. I was "diagnosed" with Hypercupremia, a fancy word for copper poisoning. I use quotes because hypercupremia isn't an actual disorder - it's a symptom of a larger problem.
My gastro was at a loss as to what was causing it and I was sent over to a hematologist at the Austin Cancer Center who had some experience with copper disorders. We ruled out environmental factors immediately - whatever was happening was my body's doing. He ran another liver biopsy (as well as a TON of other tests and scans including my fourth MRI), discovered my copper levels were continuing to rise, and, after spending months trying to pinpoint what I had, he actually came into the room, sat down, put his head in his hands and said "I don't know. You're officially a medical mystery."
It is now May of 2018. A full year later. This past year has been hospital stays, tests, scans, a slew of different medications, and so many doctor appointments that to be honest it's all just a blur. Near the end of 2017, after running test after test attempting to find the cause of the toxic copper levels, the symptoms of hypercupremia got so severe that my doctors had to switch from finding the cause to treating the symptoms instead. I was on two months of high zinc treatments and then another month of chelation treatment that left me so sick I couldn't move and eventually culminated in a week-long hospital stay at the end of last month (including a CT scan, an endoscopy, and numerous blood tests that showed infections in both kidneys). We have yet to see if any of that has worked to decrease the copper toxicity in my body. I have four doctors appointments in the next few weeks, one of which will hopefully tell us if the chelation treatment made a dent on the copper. If it did, then the plan is to continue to bring it down to a normal level and then go back to finding the underlining cause before the levels begin to rise again.
At this point in time, I am still unable to walk, my memory issues are worse than ever, I suffer from audio hallucinations and hearing loss, I've been losing my hair, and I have severe tachycardia even at rest. I rarely go through a day without a three hour nap but rarely have good sleep. My hands constantly shake and my anxiety has never been higher. I struggle with every day things like opening a plastic bottle or taking a shower by myself or even sitting upright in a chair for long periods of time. While my seizures have grown fewer with medication, I still battle with migraines and neurological issues (sometimes I can't get my body to do what I want it to like try to pick up a cup or move my leg into a different position). I'm also able to manage my pain thanks to medication but there are days my whole body shakes from spasms. I have been unable to work or even drive in two years and my husband has had to bear the burden of trying to pay the copious amounts of medical bills on top of both of our various every day bills/loans/credit card payments.
Which is why we are asking for help.
My medical bills have become a towering shadow over our lives, especially with my most recent hospital stay. Without insurance or adjustments, it would have been over $56k. Thankfully with insurance, it'll only be about $8-9k but with the previous medical debt, as well as medication, copays costs, and upcoming appointments, we're setting this goal at $10k with hopes that it won't be more than that. (If by some miracle we make more than that, it'll go to all upcoming/future medical expenses. This journey isn't over yet.)
If you're able to help, even if it's just to share this page, we greatly appreciate it. It has been a very long journey and the path to recovery is still ahead of us. I'm grateful for my husband and our many friends and for all of you for just reading my story. You have my endless gratitude.
Thank you for helping us get through this rough time.
Love,
Nikki & Jake of Team Jikki
Organizer
Nikki Jeske
Organizer
Leander, TX