If you’ve landed here, thank you. At 33 years old I’ve become legally disabled due to rare disease after 7 hospital admissions totalling 2 months that have strained my husband and I so severely that we now must leave everything, and move cross-country to live with family. We desperately need assistance in making this move possible, and getting access to adequate medical treatment for me. The stress of my health and the total strain it has caused on our finances has greatly impacted my husband’s health as well, and we have no option at this point but to move. While we are sad to leave a city we love, we are thrilled at the prospect of renewed life!
My health requires me to live close to a major teaching hospital, and requires ongoing treatment. The trouble is, my body has long rejected (or out-smarted!) many treatments, but at this point is rejecting even the most basic of treatments that help control my day-to-day, pain, and are impacting my ability to swallow and eat.
I have to eat mostly a liquid diet of smoothies, soups, and the occasional fatty breve for the soul! Each day I awake is a guessing game of symptoms. Will I have enough energy to care for myself? Too much pain to move? I often have so little energy that completing thoughts and sentences is a chore, and therefore very frustrating when trying to communicate. My pain is only vaguely muffled with medication, diet & exercise, and numerous techniques. My Behcet’s disease causes ulcerations of my mouth, throat, esophagus, face, armpits, etc,. I deal with blinding stroke-like headaches that can keep me in bed for days. These are only some of my symptoms, and I consider a good day one in which I shower, cook meals for myself and take a walk outside hand-in-hand with my husband.
Because of the way the FDA has long operated, people like me with rare diseases do not get their medications covered by insurance even if there has been some research indicating their effectiveness. If the medication hasn’t been through a controlled drug trial for your exact disease by the medication manufacturer, then insurance will not cover it for your disease!
Right now there is a medication I want to try in conjunction with OHSU (Oregon Health Sciences University) in collaboration with my team at UCLA, but I will need to pay out-of-pocket. Each infusion is roughly $2500 and I will need a minimum of 5 to tell if it works. If it does... I could have my life back. This medication is unlike anything else I have tried, and works in a completely new way and has put many people with very different diseases in remission. So I have set his GoFundMe at that minimum.
Not only do we need access to different medications, and second opinions, but we just need more help. We are moving to my husband’s hometown of Portland, Oregon and will be living with his family while we get back on our feet and my health gets more stable (and his!!).
Being my primary caregiver and provider has taken a serious toll on my husband in recent years, and we see no other option than for him to walk away from his career of over a decade and find a better long term employment arrangement for our situation. Initially he will be caring for me, as this treatment requires someone to be by my side throughout it. And while I rest, he will be doing some small contract work and job hunting.
We have received so much loving kindness from friends & family, and are now opening this to our community. We wanted to be honest about what we’re going through, because the secretive stress alone has been bad for us both. We thank each and every one of you for anything you can give, prayers included.
With love & admiration from the bottom of our hearts,
Britt Johnson & “Mr. Hurt Blogger”
***Initial goal was listed at $10,000, but myself and others quickly realized that was one short of five infusions, the pre and post infusion doctor visit fees, and covering the small GoFundMe fees. After polling my community on Twitter, 63 people voted and 94% recommended I raise the goal to accurately reflect my total need. So I have done just that. Thank you for your understanding and generosity!
Honest financials:
-I receive monthly federal disability, but it’s not enough to currently cover all of our monthly bills
-Our savings are basically gone after I had to quit working in July of 2016
-We are both still paying student loans
-We are extremely careful with the resources we have
-We have both worked since our teens!
My health requires me to live close to a major teaching hospital, and requires ongoing treatment. The trouble is, my body has long rejected (or out-smarted!) many treatments, but at this point is rejecting even the most basic of treatments that help control my day-to-day, pain, and are impacting my ability to swallow and eat.
I have to eat mostly a liquid diet of smoothies, soups, and the occasional fatty breve for the soul! Each day I awake is a guessing game of symptoms. Will I have enough energy to care for myself? Too much pain to move? I often have so little energy that completing thoughts and sentences is a chore, and therefore very frustrating when trying to communicate. My pain is only vaguely muffled with medication, diet & exercise, and numerous techniques. My Behcet’s disease causes ulcerations of my mouth, throat, esophagus, face, armpits, etc,. I deal with blinding stroke-like headaches that can keep me in bed for days. These are only some of my symptoms, and I consider a good day one in which I shower, cook meals for myself and take a walk outside hand-in-hand with my husband.
Because of the way the FDA has long operated, people like me with rare diseases do not get their medications covered by insurance even if there has been some research indicating their effectiveness. If the medication hasn’t been through a controlled drug trial for your exact disease by the medication manufacturer, then insurance will not cover it for your disease!
Right now there is a medication I want to try in conjunction with OHSU (Oregon Health Sciences University) in collaboration with my team at UCLA, but I will need to pay out-of-pocket. Each infusion is roughly $2500 and I will need a minimum of 5 to tell if it works. If it does... I could have my life back. This medication is unlike anything else I have tried, and works in a completely new way and has put many people with very different diseases in remission. So I have set his GoFundMe at that minimum.
Not only do we need access to different medications, and second opinions, but we just need more help. We are moving to my husband’s hometown of Portland, Oregon and will be living with his family while we get back on our feet and my health gets more stable (and his!!).
Being my primary caregiver and provider has taken a serious toll on my husband in recent years, and we see no other option than for him to walk away from his career of over a decade and find a better long term employment arrangement for our situation. Initially he will be caring for me, as this treatment requires someone to be by my side throughout it. And while I rest, he will be doing some small contract work and job hunting.
We have received so much loving kindness from friends & family, and are now opening this to our community. We wanted to be honest about what we’re going through, because the secretive stress alone has been bad for us both. We thank each and every one of you for anything you can give, prayers included.
With love & admiration from the bottom of our hearts,
Britt Johnson & “Mr. Hurt Blogger”
***Initial goal was listed at $10,000, but myself and others quickly realized that was one short of five infusions, the pre and post infusion doctor visit fees, and covering the small GoFundMe fees. After polling my community on Twitter, 63 people voted and 94% recommended I raise the goal to accurately reflect my total need. So I have done just that. Thank you for your understanding and generosity!
Honest financials:
-I receive monthly federal disability, but it’s not enough to currently cover all of our monthly bills
-Our savings are basically gone after I had to quit working in July of 2016
-We are both still paying student loans
-We are extremely careful with the resources we have
-We have both worked since our teens!
Organizer
Britt Johnson
Organizer
Long Beach, CA