Professional Patient


I’m working on better ways to update you guys as I go to appointments. I asked in my stories if you prefer blogs or videos and you strongly voted videos- stay tuned!

Honestly it’s so draining for me that it takes a minute to write and share about appointments/health updates but I think it’s important to share because if I am searching for answers, and feeling overwhelmed by life with chronic pain/invisible illness/rare diseases than I know there is someone else out there piecing their puzzle together and feeling the same way. If my journey reaches them, I hope I serve as a piece in their puzzle, helping them feel less isolated during this time- I’m all about that! Selfishly, blogging is probably for my sanity as well, as tasking as it can feel sometimes, it does help me process. As I sit and enjoy coffee with a friend and update them, I can’t help but laugh at how ridiculous all of this can be sometimes. SO HERE WE GO!

I was able to see my rheumatologist last week. I wasn't suppose to be able to see her until February but I have been stalking my doctors offices and poaching any appointments that had cancellations. So that was a win!
Last time I saw her, I was sent on a “hike” of testing and referrals that hit a dead end. She ordered a colonoscopy/endoscopy, blood work, and asked me to do a cherry tart cleanse. Then she had me see a surgeon to potentially remove or biopsy a solidified lymph node in my neck that's been stagnant for like, years. Upon seeing that doctor he said that would be detrimental to my progress and would set me back in terms of building strength and moving again and was very against removing the node. Her solution always seems to be steroids, antibiotics, or surgery. Sometimes it feels like we're really grasping at straws and I’ve grown skeptical of the medical field in general. After working up quite the bill in tests, with no conclusion or clear direction, I felt pretty drained from the whole experience and haven’t been as diligent about following up as maybe I should have been.

Anyways, my feet seemed like cause enough to make an appointment.

So THIS appointment, we reviewed my blood work from the last time I was there, and she wanted to repeat the blood work because my CRP and ESR blood markers are apparently the highest off all her patients in 2018. These two markers indicate chronic inflammation. She ordered more blood work and she hypothesized that this issue with my feet is something called, Vasculitis. Vasculitis is inflammation of blood vessels, in my case in the sole of my foot. She explained that symptoms such as Vasculitis can arise when the immune system is suppressed and has chronic inflammation. Her solution was steroids, cause you know… the thousands of other times I took steroids it resolved this underlining inflammation? (eye roll) When I expressed my concern with steroids, she suggested antibiotics, (eye roll), when I expressed concern with antibiotics, she pushed for ANOTHER colonoscopy/endoscopy explaining how they probably missed this the first time. I tried not to roll my eyes again, and expressed concern with repeating this test. She then explained that I could take a daily medication that would require routine testing every 6 months, when I asked why she said it can affect the blood count in your liver…. seems casual. What Fun?! We didn’t really settle on anything, I told her we could come up with a plan once we reviewed the blood work.

Anyways, I went down the hall to get my blood work taken and was told by the nurse there that she was leaving and told me to go to another location for my blood work. So, that was cool, too.(eye roll) I wished her the day she deserved, reported her and went on with my day, eyes basically stuck to the back of my head at this point.

KC experienced a snow blizzard and my head exploded with a 3 day migraine. I was basically just stuck in bed and therefore, I wasn’t able to get my blood work done until the next week.

According to my nurse, over the phone, my results came back “normal” but my doctors letter will be sent by the end of this week once she reviews the results. (This is standard protocol, but still… EYE ROLL!)

I left the appointment, disheartened as usual and pretty frustrated at the lack of direction with my care, knowing I needed to find better resources but at a loss with where to even start. I continue to baby my feet - praying not make them worse somehow, eating an anti-inflammatory everything, cuddling Bear and staying optimistic that although the plan is blurry now, that there is INDEED a bigger plan at play and putting my trust in that.