Help Rose and Bee secure Medical Treatment for MS

Hi everyone, my name is Rose. Here is a little bit of our story:

When I met my partner 8 years ago, she had already been struggling with her health for almost 8 years with vague answers. They had been sent to specialists locally and at Mayo Clinic and been placed on chemotherapy/ Immune suppressants, countless medications and 6 surgeries with specialists all to no avail. In fact, one surgery made her have malabsorption and she doesn’t absorb medications or nutrients correctly as a side effect. Many doctors would label this as anxiety and we’re quick to push us out of office. As a minoritized couple this something that we experience often. However, over the past 5-6 years it has gotten progressively much worse.

At that time we needed to find a new place to live and because we were paying for medical bills we could not afford much in way of rent. We both worked 2-3 jobs all while Bee was suffering with excruciating bouts of flare-ups where she could not walk, eat, swallow, sometimes couldn’t see, or think clearly among many other symptoms.

Last year after a dental procedure left Bee with excruciating facial pain we ended up seeing a general Doctor who diagnosed anxiety and offered little aid. This was strange as Bee had not been having any symptoms of anxiety at this time that seemed unrelated to not knowing why her face was in excruciating pain. The pain went away for a bit but other symptoms started to emerge. Bee has had to leave her job and failed college classes due to her illness. We have attempted to start an at home business to help survive and manage to get by but this is also very hard on her body. Their malabsorption in their intestines has gotten worse so medication is very hard to ingest along with having four different surgeries in this time to correct Colo-rectal problems. At this time there is an active fistula in her body but we are waiting to see a specialist again regarding this and the possibility of surgery. However, in order to get this surgery we have to go through physical therapy to ensure that she will not be left with an ostomy bag. This is $7,500 as well out of pocket on top of other medical necessities.

After battling for 14 years, we recently saw a local Neurologist and they FINALLY did the MRI we had been requesting. The diagnosis was Multiple Sclerosis (which they believe is aggressive) as well as Trigeminal Neuralgia was suspected. Bee also needs back molar tooth work done and cannot see a regular dentist as the risk are too high to see a non-specialist.

Needless to say we are devastated. Bee’s quality of life has been impacted heavily and this pandemic has ,sadly, made it even worse. As of now the plan is to try a couple medications and to discuss the future possibility of brain surgery in the future for these problems. However, most of what we are going through is not covered by insurance and we have to pay out of pocket. I have had to take multiple days off and have lost out on a large amount of income due to being the sole caretaker for my partner.

On top of this we are currently living in a building that is a major safety hazard. We do not have sufficient insulation nor maintenance, high levels of crime and police presence as well as having been exposed to mold. We also deal with racist, homophobic, and antisemetic attacks. On top of this we have two vehicles and both are in need of repair but haven’t been able to as almost all funds (including our shop funds) go to medical bills.

We are raising funds to help us survive this time and get the care that Bee needs while allowing me to take the time needed to find a home and care take for my partner. After 16 years of searching we have an answer and are hoping to get to Mayo Clinic (medical and dental care) so that Bee can get accurate care from doctors that are more familiar with her complex conditions and how they interact.

We both want to thank everyone for their support and care during this time. The future for us looks a bit shaky and we’re not sure where we go from here but appreciate you reading our story. Any donation big or small helps and if you are able to share that would be wonderful as well.

Thank you for being in this space. ❤️

Rose and Bee