I'm Still Here


I'm Still Here

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I've been keeping my head down and making bracelets for the craft fair.

Marc seems to be doing exceptionally well but I've developed some sinus issues from some pretty bad allergies. Not to mention, it is unrealistically cold right now. I still haven't had the time or money to clean the vents so that we can run central heat. I have purchased two heaters for our bedroom. The rest of the house remains just as cold as the outside. I'd love to light a fire but don't want to do anything that will bother Marc. He rarely seems to be doing as well as he is doing lately.

We finally got a car and although it isn't the best, it gets us around town. Getting to the doctor's appointments, still an issue we are waiting to address because I am not sure (especially for the price I've paid for the car) that it is even capable of making the trip. I should know by this week.

However, dealing with his doctors is starting to become very angering. I've been trying to schedule appointments on the same day. His ENT is flexible but everyone else seems not to be working with us. I sent a letter of complaint to a guy we were introduced to who handles issues with the social workers who are supposed to be helping us coordinate his care. It feels like they've dropped the ball.

We did hear from his doctors at Mayo Clinic and they've decided they are going to get together and look into the medical records since he's been at Stanford and then give us their feedback. They responded immediately to our request. They are just waiting on records we asked to be faxed last week that were apparently mailed... another ball dropped by Stanford.

We had one doctor appointment on Friday but I am going to have to cancel it if we cannot get at least two more appointments scheduled for that day. I can't afford to come out every other odd day for some appointment. My husband's health is very important but if I spend all our money on transportation then how am I going to afford his medications? It's just all starting to weigh very heavily on me dealing with Stanford.

However, his home health RN is amazing. She's been taking care of us both. I was on my way to Urgent Care the day she came to visit Marc and she told me to stay and she'd give me a check-up, she didn't want me to waste the money. Thankful, she was right. Her suggestions have me feeling significantly better.

I am still going to sit here with my head down when it comes to dealing with everyone and everything else. I've only got enough energy at the moment to focus on Marc. It's a heavy task with long hours and very little sleep but so far, I've got it covered.

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Thank goodness for the RN and for the docs at Mayo! Hooray for good days for Marc -- I pray that you can get back to your 100% soon and am keeping my fingers crossed about the car.\r\n\r\nI am sorry the coordination at Stanford is so crappy. One thing that's helped me has been getting as much as I can in the way of medical records after office visits and procedures. I've learned that the same records our GP charges for, we can get for free from the hospital. I scan the records and can provide them on demand to different specialists. It came in handy when my partner's neurologist was supposed to receive records that never came; I pulled a printout from my totebag and gave it to him. (Then there was the case of surgery records that the hospital never sent to the GP.)\r\n\r\nI'm keeping my fingers crossed you can get those appointments lined up. And I hope the weather gods are merciful!


Hang in there Casandra! You are doing such a good job and advocating for Marc - who is doing so well!! What a blessing to have the RN to take care of You!!!

Casandra Porter

:) Thanks

Casandra Porter

Thanks, Pegi. I haven't talked to the doctors we normally see but I will do so and see if that changes anything. As always, thanks for the prayers :)