Trying to be (a) patient

First of all, great news! I have a UCSF neurosurgery consultation on Tuesday, May 20. However, since April 9, 2025 when I received the results of my initial CT, every step on this journey has been hurry up and wait. From getting my MRI scheduled, completing the MRI, waiting to hear from UCSF referrals, and getting scheduled for a consultation. Everything feels like it is moving at snail's pace. As I reflect on the events so far, I'd like to share some thoughts/tips for navigating the healthcare system and dealing with a worrisome medical diagnosis.

The squeaky wheel gets the grease

The number of times this phrase has come out of my mouth is incredible. As much as I hate it, sometimes you have to be a little bit annoying in order for things to get done. Often I saw this in the hospital. Here is an example: I would be working with someone and they would say something along the lines of the nurse, doctor, CNA, etc did not ask me I wanted x, y, z. Hospitals are often under staffed and the staff is over worked. Your providers do not mean you harm or for you to feel ignored, they just cannot read your mind and have a million things on theirs! You MUST make your needs known, advocate for yourself or recruit someone (family/friend) who can, and be persistent.

Though I am early on in my own medical journey, this has already paid off for me. About a week and a half after my referral was sent to UCSF I still had not heard from scheduling. Three days in row I called and left a voicemail for the patient care navigator without a response. Then, I tried calling one more time but from a different phone number. Lo and behold they answered! They said they did receive my voicemails but had no updates for me. However, they did give me the direct contact information for the neurosurgeon's scheduler. This was huge! I gave her a call right away. Ten minutes later, I was off the phone and scheduled for a consultation. If I had just waited for someone to contact me, who knows how long it would be until I could get on the neurosurgeon's radar??

Taking care of your mind

A scary medical diagnosis can take a huge toll on your emotional wellbeing. Here are a few things I am working on to help my mental state.

Therapy

It is 100% normal to feel overwhelmed, anxious, scared, and/or worried when you receive a frightening diagnosis. In order to learn coping strategies and healthy ways to manage these big emotions I found a therapist online. Technology has opened the doors for accessing therapists and this is not the first time I've used telehealth therapy to manage a tough situation.

There are several options for finding a therapist. First, your health insurance probably has some sort of search option to find therapy providers in your network. Second, you have the option to pay out of pocket and find a therapist outside your insurance company. Options for finding therapists can range from a Google search, going through a dedicated online therapy provider such as Talkspace or Better Help, or searching the Psychology Today directory. I utilized the Psychology Today route because I could filter my search by my insurance and other specific criteria that fit my needs. Having someone to talk to and help process all these feelings is an immense help!

Support Groups

Continuing on the theme of technology, there is likely an online support group for any diagnosis you can think of. Some diagnoses may have support groups sponsored by large associations or societies for your diagnosis which you can find by searching their webpages. You can also go the social media route. I did a quick Facebook search and found a group specifically for meningiomas in the petroclival region of skull. Having people to talk to who have already faced what you are facing is a valuable resource and has already helped ease a lot of my own anxiety.

Writing

Blogging is new to me, but journaling is not. There is something about writing your thoughts and feelings out that is so therapeutic. Whether it's pen on paper or fingertips on the keyboard, writing is great for processing everything that is happening.

Preparing for appointments

As my consultation appointment approaches I'm following the advice I often give my patients to help prepare for their appointments. The first thing I highly recommend is to make a list of questions you have for your provider. Make sure to bring that list with you to your appointment too! It is so easy to forget all the concerns you want to go over in the visit and having a reference helps keep you on track. Second, I made sure to fill out all the health history questionnaires on my patient portal. That way, my provider has a thorough understanding of my condition. Third, I put together a list of my medications. I do not have a lot of prescription meds, but I am taking a handful of over the counter meds and supplements. Listing everything is so important because seemingly innocent supplements or over the counter meds may have serious drug interactions with other medications. My fourth recommendation is to get your advanced directives in order. These important health documents help guide your care if you are no longer able to make your own decisions. Though I have not completed this last step, it is on the top of my to do list!

Standby

Well, that's all for now. Hopefully this information offered some useful insight for navigating the healthcare system as a patient. I will be sure to post more updates following my consultation on Tuesday. Fortunately, I have no new symptoms and will continue to take everything day by day. Stay well, friends!