We had another Cousiblings’ Night this past weekend. The weather could not have been better outside, and we had a great time! My Dad was also in town for work, and he wanted to see us and hang out on his screened-in deck with us before he left town again. My heart wanted to do both of these two social events on Saturday even though my mind was telling me it was not the best idea. My iron was/is low again, so my usual fatigue and brain fog were heightened. I gave it my all. I took a nap at 10:00 AM, and I did my health regimen in the early afternoon. Even though I did all the things, my body let me know that it was not the best idea. By Sunday morning, I was temporarily down for the count. I decided that I would wear my favorite sweatshirt to remind me of my goal (see image #1 below).
I also dealt with some judgment this week about parts of my health journey. It had me pause for a moment and think about whether or not I wanted to continue to post my story as openly and honestly as I do, but then I remembered my why and decided to keep moving forward. I know their judgment is more about them than it is about me (see image #2 below). I guess it comes with the territory of being a trailblazer, but it would be nice to have a little more support and a little less judgment along the way.
I was also supposed to have my appointment with my conventional doctor yesterday in order for her to order my IV iron infusions. Well, the nurse with the attitude problem from last week scheduled my appointment for Wednesday, October 18th instead of Wednesday, October 11th. I double-checked the date and time with her several times before we got off the phone last Friday, but she was apparently unable to successfully complete the task as discussed. My husband took time off from work in order to be with me for the virtual appointment, so we were super (not) excited to find out that it was scheduled for the wrong date. So, now I have to wait an extra week before the orders are supposedly put in and before I can even attempt to make my infusion appointments. I usually have to wait about a week after the orders are put in before I actually get my first infusion. I hope this appointment is really just a technicality and that the doctor fulfills her promise of ordering the infusions after the appointment, or else my iron levels are going to be dangerously low. Getting IV iron infusion orders should not be this hard . . . In fact, it should be the easiest part of this health journey unless there is something that this doctor hasn’t yet said. Just when I think one aspect of this health journey will be easy peasy lemon squeezy, it is actually much more stressy, depressy lemon fucking zesty (see image #3 below).
I know some would say that I should get a different conventional doctor since this nurse has been repeatedly rude to me and terrible at her job since I started with this practice in February. However, all I really need from this doctor is to order my IV iron infusions. It is the only part of my treatment that is even partially covered (at least it has been thus far) by insurance, so it is the only thing required of her as of right now. The amount of time it would take me to find a different conventional doctor, establish care, and provide my medical history doesn’t seem to be worth it yet. That could change at anytime, but right now, I just need this one part to be easy. It has not been easy with this practice, but it has been easier than it would be to change doctors just because of the nurse’s attitude and incompetence. [Side note: I actually have compassion for the nurse. I can only imagine what must be going on in her professional and personal life for that kind of demeanor to be displayed to the rest of the world. I know it is not personal. And, also, even though I have compassion for her and know it is not personal, her attitude/behavior is still unacceptable. Both can be true at the same time. I can have compassion for her and also address the unacceptable attitude/behavior as needed.] Please say a prayer and/or send us positive energy for a quick and easy resolution to this IV iron infusion situation.
It should not be this difficult to get adequate medical care. If all of my doctors would be willing to work together, I wouldn’t have to manage all of the different practitioners separately. I spend a ridiculous amount of time trying to coordinate all of my different treatments and getting each of my practitioners to just do their part, and it is exhausting. I basically have 3 full-time jobs: my actual job, my “coordinating treatment” job, and my “daily health regimen” job. If I wasn’t an organized and proactive person, this part of the journey would be even more difficult. It has become such a regular part of my life over the last 20+ years that I have gotten used to it. However, being used to it doesn’t mean that I want it to continue.
[In contrast, my husband called one of his practitioners today and spoke to the employee whose sole job is to answer patient questions in a kind, prompt, and respectful manner. This person can be reached via phone or text. He answered my husband’s call today, and in under 3 minutes, he had a resolution for my husband’s situation. My husband has had quite a few interactions with this practice, and the customer service and genuine respect for patients is unmatched. After this interaction today with this employee, my husband reiterated that this type of experience is what should be available at every medical practice, and he can’t believe what I have to go through each and every day just to get my basic medical needs met. (He frequently reminds me that I am a Badass for this reason. ❤️) This particular practice does not provide medical care in an area that I need just yet, but they are on the list for when/if I do need medical care in this specific area.]
This morning, we had our regularly scheduled virtual appointment with our financial planner. This is a topic that is generally difficult for me due to the exorbitant amount of money we have to spend on my health journey, but I don’t mind meeting with him. He is truly one of the best people I know. He always asks about me, and he always has a way of making me feel better about the financial implications of my health situation. His ability to empathize is far greater than most people I know, and especially far greater than most financial planners I know. He continually reminds us that attempting to save my life is far more important than anything else. What a gift he has been in our lives!
Brutal. Temporarily down for the count. Judgment from others. Lemon fucking zesty medical situations. Having what amounts to 3 full-time jobs.
Beautiful. My favorite sweatshirt. Hanging out with loved ones. My organized and proactive nature. A supportive husband who always reminds me how much of a Badass I am. A kind and compassionate financial planner.
Just another day of . . . This Brutiful Life: The Brutal & Beautiful Moments of My Life.
(image #1 credit: my husband; image #2 credit: on image; image #3 credit: unknown. Click on images to make them bigger.)
This Brutiful Life 