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After over a dozen surgeries, doctor/specialist visits, and thousands of miles traveled there is finally a diagnosis. Erdheim chester, a rare inflamitory blood cancer, and Xanthogranulomatous, which causes inflimation tumors.
Although this may not sound dabilitating, it has affected every system in my body. The Xanthogranulomatous, caused a tumor to grow in my brain. Even though that was removed it will grow back. While the Erdheim chester is depositing tumors troughout my body. In addition Erdheim has caused my colon to shut down, which incurse out of pocket expenses until the colon can be removed and a colostomy bag put in place.
As with all cancers, sestemic treatment is the standard go to option, but because of the mutations and inflimation from the disorders radiation was not effective and chemo is not an option. Which leaves expensive out of pocket alternative treatments. Because of the rarity of my illnesses the specialists that are able to monitor and treat my diseases they are in multiple states and this incurs costly travel expesnes.
Currently am working on getting disability to help cover the costs of medical and living expenses but even when it does go thru it will not be nearly enough to help.
Travel costs: To Mayo clinic is 3 hours of driving one way, and these trips are becoming more frequent. Still have a storage unit in Washington and to move that from Washington to Minnesota it will cost $2,000 dollars and it costs $175 a month. Having to travel between teams in Rochester MN and Seattle WA, with airfair and lodging (since there is no chemo treatment and covid they will not allow me to stay) it costs roughly $1800 a trip.
Medication Expenses: For the over the counter supplements and other medical supplies that insurance does not cover costs me on average $400 a month. That is only including my day to day, this does not include the changes I need to get to my perscription and eye glasses, the perscription sun glasses I will need, and other items to try to reduce the stress on my body and brain. For improper eye wear, over exposure to harsh light, risks of slipping and falling, etc pose large risks to my life and a much higher increase in upfront costs and replacement of items is roughly $3,000.
Other: Baica cost of living expenses. I still have to be able to pay for rent, pay for food which I have to be on a very special diet to try to help midigate complications, and food for animals so that they can help midigate falls and alert others if I where to have complications.
Although this may not sound dabilitating, it has affected every system in my body. The Xanthogranulomatous, caused a tumor to grow in my brain. Even though that was removed it will grow back. While the Erdheim chester is depositing tumors troughout my body. In addition Erdheim has caused my colon to shut down, which incurse out of pocket expenses until the colon can be removed and a colostomy bag put in place.
As with all cancers, sestemic treatment is the standard go to option, but because of the mutations and inflimation from the disorders radiation was not effective and chemo is not an option. Which leaves expensive out of pocket alternative treatments. Because of the rarity of my illnesses the specialists that are able to monitor and treat my diseases they are in multiple states and this incurs costly travel expesnes.
Currently am working on getting disability to help cover the costs of medical and living expenses but even when it does go thru it will not be nearly enough to help.
Travel costs: To Mayo clinic is 3 hours of driving one way, and these trips are becoming more frequent. Still have a storage unit in Washington and to move that from Washington to Minnesota it will cost $2,000 dollars and it costs $175 a month. Having to travel between teams in Rochester MN and Seattle WA, with airfair and lodging (since there is no chemo treatment and covid they will not allow me to stay) it costs roughly $1800 a trip.
Medication Expenses: For the over the counter supplements and other medical supplies that insurance does not cover costs me on average $400 a month. That is only including my day to day, this does not include the changes I need to get to my perscription and eye glasses, the perscription sun glasses I will need, and other items to try to reduce the stress on my body and brain. For improper eye wear, over exposure to harsh light, risks of slipping and falling, etc pose large risks to my life and a much higher increase in upfront costs and replacement of items is roughly $3,000.
Other: Baica cost of living expenses. I still have to be able to pay for rent, pay for food which I have to be on a very special diet to try to help midigate complications, and food for animals so that they can help midigate falls and alert others if I where to have complications.