Relationships are hard. I don't mean to insinuate that hard is good or bad. It just is.
These last two weeks have been met with sadness, followed by renewed hope. I last left off by discussing my experience with Mayo Clinic. A couple of days after, we met with rheumatology and immunogenetics at UCLA.
The immunogenetics appointment went great. We met with Dr. Kuo (one of the two physicians in charge of the department), her resident, fellow, and fresh new medical student.
It was interesting to see the hierarchy as the fellow took charge, the resident smiled a lot at Chloe and made a couple of remarks, and the medical student stayed tucked away in the corner without uttering a word.
All in all, it was a thorough and pleasant visit. We officially began the immunological workup; we'll hold off on initiating another medication until we can gather as much data as possible.
The rheumatology appointment, on the other hand, wasn't so pleasant. Don't get me wrong, Dr. Whelan is very educated and spent much time explaining his thought process. The problem came about when he told us that our daughter had lupus. He said it confidently but was very optimistic about her prognosis.
Everything was in line with what I mentioned earlier, so the mention of lupus didn't come as a shock. For those who haven't read or listened, I discuss this extensively in the article/podcast titled "Patients are more than a set of labs."
Even so, it was the first time someone with a white coat said it with certainty. It was the first time Liz ever considered this a real possibility.
The two weeks that followed were tough for us.
Baseline, Chloe's appointments take up 15-20 hours a week, not including the reading and research I put in every week to become as informed as possible so that when it's time for a decision regarding her care, I can make it knowing I've done my homework.
It's interesting how events drastically change one's perspective. Before having a kid, I thought I was swamped. Then, Chloe was born, and I laughed at my past self for thinking I was anywhere as efficient and productive as I was at that moment. Now, I think about who I was just one year back, and I feel the same again.
Not too long ago, I was watching a talk by Seth Godin. He asked the audience to raise their right hands as high as possible. Then, he asked them to raise them higher. Everyone visibly raised their hand higher.
He says, "everyone holds back every time because that's what you've been taught to do. You've been taught to do that by your third-grade teacher, your coach, and your boss. Because if you put everything into it, they're just going to ask for more anyway."
It's an interesting thought experiment. Was I willingly holding back for some reason unbeknownst to me? Was it something I automatically did because it's easier to do more when you hold back from the start?
If true, how much of this bleeds into relationships?
As we go through this journey as a family, I can't help but reflect.
I've come to appreciate how complicated relationships can be when nothing is involved other than life's everyday obstacles. Most people work through this scenario.
But what happens when the obstacles become bigger? Do things get more difficult? Yes, but not in the way you might be thinking. It's not that it gets complicated because people fail to rise to the occasion (many do, albeit separately).
Tough times ultimately make it difficult to rise to the occasion with your partner. Maintaining the proper communication necessary to stay grounded and on good terms is tricky. But what is the point of a relationship if this doesn't happen? Survival is the inherent purpose behind a community or tribe. Anyone can survive when times are good, but we should be able to lean on our tribe (family) without breaking the system when times are tough.
Ideally, you and your partner have a unifying goal that you both want to reach. If this end goal differs for both parties, you've failed before you started.
It sounds easy but requires a lot behind the scenes. You must know your goal, your partner must know their goal, and you must communicate your goals to ensure it's in alignment. Finally, you'll need to come together when either of you starts to veer off course.
I read a post the other day that asked, "why aren't marriages lasting like our grandparent's generation"?
Everyone had an opinion. I suppose I do too.
Couples indeed divorce more today than they did then. Does that mean the relationships were better? It's hard to say as we didn't live during that era and didn't walk in everyone's shoes. Only each couple knows the answer that pertains to their specific situation.
I believe there were people (just like today) that stayed together because that's what they were "supposed to do." They did this even at the expense of their happiness and fulfillment. They survived, but at what cost? Is this type of life any better than death? Only they can answer that.
However, that result happens when each person creates their own goal and then takes an individual path to attain that goal without ever communicating and checking to see if they are in alignment with their partner.
Whether we realize it or not, we are all forging our path to some destination. Every decision we make takes us closer to something and farther from something else.
Success with your family not only requires both parties to be self-aware, but it requires proper communication. Doing the right thing at the wrong time is still considered to be the wrong thing.
Communicating on its own is incredibly complex. I've spent time thinking about how intricate it all is. If you're not a weirdo like myself, who thinks about this type of thing, let me give you the cliff notes.
Communication requires person #1 to package and send person #2 a message (including verbal and non-verbal cues).
Person #2 needs to internalize the message using all five senses. Then, they need to unpackage and interpret the message (in the intended manner).
Person #2 needs to repeat the entire process when giving feedback.
Various things can complicate this process, such as word choices, misspellings, loud noises, tonality, etc.).
Before you ever speak, people form stories about who you are, what you believe, and what you want. They pick up signals over time from body language, prior conversations, mannerisms, and the way you walk and speak. Over time this is aggregated subconsciously, and a belief is formed regarding your identity.
Therefore, the decoding and interpretation of any message are heavily influenced by all these factors before you ever open your mouth. The words you've just told person #2 are a small part of what they use to interpret your message. Like it or not, people constantly form judgments and opinions that carry more weight than words.
I heard this example a while back that illustrates how something as simple as the tone changes the message someone receives:
I didn't say he hit his wife
I didn't say he hit his wife
I didn't say he hit his wife
I didn't say he hit his wife
I didn't say he hit his wife
I didn't say he hit his wife
I didn't say he hit his wife
Each sentence is the same. But, where I put the inflection changes what you hear, think, and perceive.
Stories and beliefs about who we are and how we think about ourselves also mean we all interpret the same message differently, based on our upbringing, experiences, and the reactions we've experienced about our actions.
A variation of this is that you can't assume just because this is the way you would do things, then that's the way they should do something. We're all different, and we all have different viewpoints. I think this golden rule of "treat others how you expect to be treated" is garbage and a very old-fashioned way of thinking.
It's grounded in the idea that you're way is the right way and leaves no room for empathy. We all want and expect different things. We all have different needs. Treat others how they want to be treated, and don't expect reciprocation. If you do things with the expectation that you'll get something back, you set yourself up for failure.
Without clear boundaries and expectations, people will bring their own. It's not enough to have them, but they must be communicated and clearly interpreted, and all parties must agree.
Then, if we throw our daughter's health into the mix, everything gets thrown out of wack. These preoccupying thoughts inevitably make their way into the forefront and affect every conversation we have.
Like any other thoughts, they influence feelings and, ultimately, our actions.
So, the last couple of weeks were a bit tough. But then we got a little glimmer of hope. We got our labs back from rheumatology at Mayo Clinic.
The B2 Glycoprotein-1 Ab IgG level decreased from 90 -> 77, and the anti-dsDNA level dropped from 101 -> 87. Her C3 levels also normalized. It's excellent news and consistent with drug-induced lupus or possible elevations secondary to COVID/other unknown causes.
On the flip side, her anticardiolipin IgM antibody is now weakly positive at 19. A true positive, however, is considered to have a value over 40. Her screening for ALPS also returned negative. So, good news overall.
Last but not least, our primary immunodeficiency genetic panel came back negative. This was such a massive relief on our end. We have an appointment tomorrow, February 7th, with genetics again to move forward with whole exome/genome sequencing. If the insurance covers, we'll go for the whole genome sequencing. If not, we'll opt for whole exome sequencing.
In the meantime, we'll await the lab results from immunogenetics and take it one step at a time, just like we've been doing from the start.
Love your partner, children, and yourself. Take an audit of what's important and be grateful for the things you do have. As trivial as it may seem, many in this world would trade everything to have the very thing you take for granted.
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