Progressive Life Threatening Illness
Donation protected
I am first and foremost a single mom of 15 years. The father has not ever seen her in all of these years. This being said Having this disease is very frightening to my daughter. I've always worked full time and was in college for nursing. Then to go on for my PA. I'm unable to work any more than 3-4 hours a day.
I have idiopathic Angioedema with anaphylaxis. Mine in non histamine responsive. Which means epi pens don't work. I basically swell up everywhere. But the emergency ones are in my face and mouth. Currently I'm being treated with Hereditary Angioedema meds which are about 12k a dose. Both are rare. Even more rare mine is this bad. I hurt and tire easy. And when I'm swelling it doubles and I can't work when I am, well because this can take my life very easy. In the last month it's become worse and more life threatening.
With my illness kicking in high gear, we feel the days off badly. I was fired in January because of this illness. I wasn't "reliable ". After not working for 6 months my illness calmed down. So I felt I was ready to work again. I went back to work in June of 2016. I was out from January until then. I do have a disease with no cure. Currently I'm on the cusp of what meds work, and what won't. I've had to miss a lot of work, and may have to quit all together. Since I started working I'm back to using epi pens from once every few weeks to once a week. To this week starting 9/5 until September 11, I've used 6 epi pens. Currently I'm seeking care in New York. But the doctors there have yet to say anything back to us.
I'm coming to ask to help me subsidies my not being to work. Please. It's been a big ego hit to ask. Even 5$ works. I wish it didn't have to come to this, but I was lying to donate blood. But now, I can't do it anymore, and my mom is doing all she can. Ugh the humiliation this causes. Thanks guys. When I'm finally approved disability, it will be an easier time on me and my family.
We're all afraid of what my future will hold and how long it could be.
Because I HATE THIS ASKING BS. I won't bug on it. And only keep it up just a bit. Thank you. In advance. Ends are meeting. And I can no longer donate blood for my extra money. Please help

I have idiopathic Angioedema with anaphylaxis. Mine in non histamine responsive. Which means epi pens don't work. I basically swell up everywhere. But the emergency ones are in my face and mouth. Currently I'm being treated with Hereditary Angioedema meds which are about 12k a dose. Both are rare. Even more rare mine is this bad. I hurt and tire easy. And when I'm swelling it doubles and I can't work when I am, well because this can take my life very easy. In the last month it's become worse and more life threatening.
With my illness kicking in high gear, we feel the days off badly. I was fired in January because of this illness. I wasn't "reliable ". After not working for 6 months my illness calmed down. So I felt I was ready to work again. I went back to work in June of 2016. I was out from January until then. I do have a disease with no cure. Currently I'm on the cusp of what meds work, and what won't. I've had to miss a lot of work, and may have to quit all together. Since I started working I'm back to using epi pens from once every few weeks to once a week. To this week starting 9/5 until September 11, I've used 6 epi pens. Currently I'm seeking care in New York. But the doctors there have yet to say anything back to us.
I'm coming to ask to help me subsidies my not being to work. Please. It's been a big ego hit to ask. Even 5$ works. I wish it didn't have to come to this, but I was lying to donate blood. But now, I can't do it anymore, and my mom is doing all she can. Ugh the humiliation this causes. Thanks guys. When I'm finally approved disability, it will be an easier time on me and my family.
We're all afraid of what my future will hold and how long it could be.
Because I HATE THIS ASKING BS. I won't bug on it. And only keep it up just a bit. Thank you. In advance. Ends are meeting. And I can no longer donate blood for my extra money. Please help
Organizer
Jonelle Spencer
Organizer
Centerville, UT
