Help Bonnie Get Better!

Hello all!

 

My name is Bonnie. As a lot of you know, earlier this year I started losing my sight in one eye. This was accompanied by severe pain in my eye, head, and neck, nausea, and fatigue. I had a tumor removed from my optic nerve on May 20th. This was supposed to restore my vision and alleviate my symptoms. Unfortunately, that has not been the case.

 

For the last 6 weeks I have had painful daily vomiting of everything that I put into my body. I have tried to manage this with diet and have cut out I've cut out dairy, caffeine, carbonation, spicy, acidic, red meat, gluten (still), alcohol, high fats or sugars, and fried foods. Which as you all know are some of the things I love. I have tried many medications to manage this nausea and vomiting as well. I have had to get frequent IVs to be rehydrated. There isn’t much that I haven’t tried at this point, and this has been accompanied by severe abdominal pain and colon symptoms as well. If you have any suggestions for managing intractable vomiting, I am open to them. I would stand on my head for hours a day if I thought it would help at this point.

 

I have also gotten very fatigued and when I walk my dog around the block. I typically need to take several breaks. My balance has been poor and I fall frequently. My heart rate climbs very high with little to no exertion and I often get dizzy and pass out. My pain is steady and unrelenting. My vision is poor. I have difficulty regulating my body temperature. I was diagnosed with Ehlers Danlos Syndrome as a child, but this is though to be unrelated to that. So at this point, all of these symptoms are kind of a mystery and I am scheduled to see many specialists and a physical therapist to try to get some answers and get back on my feet as soon as appointments are available.

 

I would like to take a chance to thank all of the people who have helped me on this journey so far. Every card, flower, visit, dog walk, meal, and contribution has truly meant the world to me. Though I have a reputation for being fiercely independent, sometimes to my own detriment, I am surrounded by an incredible global community of supportive friends and family who provide me with so much love. Right now it is really hard for me to show up anywhere knowing that I may pass out or vomit and I miss my activities and my tribe a lot. There have been many lessons in this illness too, and I hope to share those at some point soon. Right now I need to ask for some additional support to make it through these next few months of getting a diagnosis and effective treatment plan in place.

 

If you can contribute anything, a kind word, a dog hike, even coming to sit on my couch with my sick ass and just share space…I would really appreciate it. My bills are coming due and I have been out of work for over a month now. Public assistance is very limited and not really available to me at this point. This has been one of the most physically challenging periods of my life, and I am in awe of people who manage conditions like this long term. I hope that when I do return to the medical field, I will be a better and more empathetic healthcare provider because of this experience. I would absolutely be lying if I said that this wasn’t hard every single day. I really need some more help.

 

Lots of love and let’s continue to pray together that this will be solved soon!