Shawn's Brave Fight Against AIDS
Donation protected
Hi all,
This saddens us to ask for funds, but we are facing the most difficult time of our lives. As many of you know, Shawn and I have been dating for years and years, he is the love of my life. Shawn was struggling with balance and mobility issues starting in early December 2019. This worsened significantly and he began falling often, and we went to the Mercy emergency room on New Year's Eve, thinking he had a stroke. He was kept overnight and we got the devastating news that he was HIV+ the next day. With further testing, it was revealed that Shawn is in the late stages of AIDS.
This is the brave update that Shawn painstakingly wrote on his birthday, January 22, mostly by talk-to-text as he has lost dexterity in his hands and is unable to type:
"Thank you all for the birthday wishes!
As many of you know I was in the hospital for 9 days recently due to some balance issues. I was falling a lot and it was starting to affect my work performance. The doctors found out what was wrong relatively quickly. Most of the time spent in the hospital was for tests to figure out how to best treat my diagnosis. Found out New Year's day evening that was HIV positive. And a few days I found out that it had progressed to AIDS.
My initial reaction was one of shock, I was sure it was just an inner ear infection or similar. Then came all the other emotions that come along with the diagnosis. Fear, sadness and anger. Who was I going to tell and when? Would I be able to return to work and if so how soon? So many questions and no answers.
Since I got home it's been a real struggle. I've fallen several times on my hip resulting in a very angry looking bruise. The fear of falling at times leads to severe anxiety. Being housebound has led to depression and frustration. At times my right leg refuses to cooperate. My right arm is weak and I can no longer write my name or any other word for that matter. These are complications from AIDS so they tell me and that with the treatment I'm on now they should get better.
I've got lots to say but I'm tired now. To be continued."
We have had to make major adjustments to our lives. Shawn is unable to walk on his own, and is still falling frequently with the use of a walker and me supporting him. I help him with dressing, bathing, all food prep, etc and can't leave the house for more than an hour or two. He is unable to work, but since we want to remain hopeful, he is currently on FMLA with the hopes of returning to work. Unfortunately, this disqualifies him from both Medicaid and SSI, which would provide in home health care and support. Shawn is not insured, but was luckily accepted at the JFK clinic for his medical needs. I asked if we should get married to get him on my insurance, but was told he would receive better care for a lower cost through the clinic. We are hoping to get some direction from his infectious disease doctor next week on the likelihood of Shawn returning to work anytime in the foreseeable future. If not, we will start the Medicaid and SSI applications again with his unemployed status. As you all know, I am a social worker, so I know those applications take 3-6 months to process. In the meantime, I am the sole financial support for both us. And while I love my job very very much and miss it terribly, I am still a social worker at the end of the day and we all know that no one goes into that field to get rich :)
My Missouri Alliance family has been phenomenal, my boss has been kind and supportive, my coworkers started a meal train for us, and we have received monetary donations and adaptive equipment like a walker and a wheelchair. I can't thank my Missouri Alliance family enough, we love you all very much. But at this time, Shawn is unable to left alone for long, and he does not qualify for in home health care. Bills are starting to pile up, and I am scrambling trying to stay on top of his care, and get him moved out of his apartment that he can no longer access. He needs in home health care, a ramp, and financial support to stay on top of everything. Shawn is now living with me in my new home, which was the plan all along, we just had to bump up the move date a bit! Shout out to my mom and sisters for helping with the cost to hire movers!
Every dollar will help, as we are struggling to make ends meet and likely will for a while. We need funds to stay afloat, and to access a very broken health care system, adaptive equipment, and groceries. These funds will go towards paying Shawn's bills such as car payments and insurance, medical transport to get him to appointments, adaptive equipment for our home like grab bars, and a ramp. Please know we are both very uncomfortable with asking for this, but it is necessary at this point!
Questions that I know will be asked:
1. I have been tested and am negative.
2. While it is impossible to know for sure, after some research, it is most likely that Shawn contracted HIV while in Pakistan for work a few years ago. While there, he became ill and was given "vitamin injections." Upon further research, there is a huge HIV epidemic in Pakistan due to the frequent administration of vitamin and health injections with dirty needles there, sadly. That being said, Shawn and I are both strong believers that there should be no shame or stigma in this diagnosis, regardless of how people contract it.
3. While Shawn's doctor refused to give a prognosis, the clinic has him listed as completely disabled currently. Doctors are hopeful that with sustained use of antiretrovirals, which he started January 10th 2020, that his AIDS related complications of brain edema and encephalopathy will diminish and he will slowly show progress. This has not happened yet, and may not happen for quite a while, but everyone is hopeful!
We are meeting with a case worker next week to hopefully connect us to a few more resources, and we would like to find support groups as well. At this time, it is next to impossible for me to get Shawn out of the house due to his mobility issues so we are hoping for a solution with that soon. Shawn is an incredible human being, full of kindness and adventure, so this is very tough for him to be home bound for so long. Thank you to friends and family who have been involved and supportive of Shawn in this brave battle!
This saddens us to ask for funds, but we are facing the most difficult time of our lives. As many of you know, Shawn and I have been dating for years and years, he is the love of my life. Shawn was struggling with balance and mobility issues starting in early December 2019. This worsened significantly and he began falling often, and we went to the Mercy emergency room on New Year's Eve, thinking he had a stroke. He was kept overnight and we got the devastating news that he was HIV+ the next day. With further testing, it was revealed that Shawn is in the late stages of AIDS.
This is the brave update that Shawn painstakingly wrote on his birthday, January 22, mostly by talk-to-text as he has lost dexterity in his hands and is unable to type:
"Thank you all for the birthday wishes!
As many of you know I was in the hospital for 9 days recently due to some balance issues. I was falling a lot and it was starting to affect my work performance. The doctors found out what was wrong relatively quickly. Most of the time spent in the hospital was for tests to figure out how to best treat my diagnosis. Found out New Year's day evening that was HIV positive. And a few days I found out that it had progressed to AIDS.
My initial reaction was one of shock, I was sure it was just an inner ear infection or similar. Then came all the other emotions that come along with the diagnosis. Fear, sadness and anger. Who was I going to tell and when? Would I be able to return to work and if so how soon? So many questions and no answers.
Since I got home it's been a real struggle. I've fallen several times on my hip resulting in a very angry looking bruise. The fear of falling at times leads to severe anxiety. Being housebound has led to depression and frustration. At times my right leg refuses to cooperate. My right arm is weak and I can no longer write my name or any other word for that matter. These are complications from AIDS so they tell me and that with the treatment I'm on now they should get better.
I've got lots to say but I'm tired now. To be continued."
We have had to make major adjustments to our lives. Shawn is unable to walk on his own, and is still falling frequently with the use of a walker and me supporting him. I help him with dressing, bathing, all food prep, etc and can't leave the house for more than an hour or two. He is unable to work, but since we want to remain hopeful, he is currently on FMLA with the hopes of returning to work. Unfortunately, this disqualifies him from both Medicaid and SSI, which would provide in home health care and support. Shawn is not insured, but was luckily accepted at the JFK clinic for his medical needs. I asked if we should get married to get him on my insurance, but was told he would receive better care for a lower cost through the clinic. We are hoping to get some direction from his infectious disease doctor next week on the likelihood of Shawn returning to work anytime in the foreseeable future. If not, we will start the Medicaid and SSI applications again with his unemployed status. As you all know, I am a social worker, so I know those applications take 3-6 months to process. In the meantime, I am the sole financial support for both us. And while I love my job very very much and miss it terribly, I am still a social worker at the end of the day and we all know that no one goes into that field to get rich :)
My Missouri Alliance family has been phenomenal, my boss has been kind and supportive, my coworkers started a meal train for us, and we have received monetary donations and adaptive equipment like a walker and a wheelchair. I can't thank my Missouri Alliance family enough, we love you all very much. But at this time, Shawn is unable to left alone for long, and he does not qualify for in home health care. Bills are starting to pile up, and I am scrambling trying to stay on top of his care, and get him moved out of his apartment that he can no longer access. He needs in home health care, a ramp, and financial support to stay on top of everything. Shawn is now living with me in my new home, which was the plan all along, we just had to bump up the move date a bit! Shout out to my mom and sisters for helping with the cost to hire movers!
Every dollar will help, as we are struggling to make ends meet and likely will for a while. We need funds to stay afloat, and to access a very broken health care system, adaptive equipment, and groceries. These funds will go towards paying Shawn's bills such as car payments and insurance, medical transport to get him to appointments, adaptive equipment for our home like grab bars, and a ramp. Please know we are both very uncomfortable with asking for this, but it is necessary at this point!
Questions that I know will be asked:
1. I have been tested and am negative.
2. While it is impossible to know for sure, after some research, it is most likely that Shawn contracted HIV while in Pakistan for work a few years ago. While there, he became ill and was given "vitamin injections." Upon further research, there is a huge HIV epidemic in Pakistan due to the frequent administration of vitamin and health injections with dirty needles there, sadly. That being said, Shawn and I are both strong believers that there should be no shame or stigma in this diagnosis, regardless of how people contract it.
3. While Shawn's doctor refused to give a prognosis, the clinic has him listed as completely disabled currently. Doctors are hopeful that with sustained use of antiretrovirals, which he started January 10th 2020, that his AIDS related complications of brain edema and encephalopathy will diminish and he will slowly show progress. This has not happened yet, and may not happen for quite a while, but everyone is hopeful!
We are meeting with a case worker next week to hopefully connect us to a few more resources, and we would like to find support groups as well. At this time, it is next to impossible for me to get Shawn out of the house due to his mobility issues so we are hoping for a solution with that soon. Shawn is an incredible human being, full of kindness and adventure, so this is very tough for him to be home bound for so long. Thank you to friends and family who have been involved and supportive of Shawn in this brave battle!
Organizer
Amity Schneider
Organizer
St Louis, MO
