I’m having one of those afternoons where I can’t quite fathom what I am going through. Don’t be alarmed, I haven’t regressed a ton or anything. I think my immune system is fighting off a few cold viruses I encountered and possibly Emma’s stomach bug. I went to Thanksgiving, I ate a bunch (4 people commented how much I ate LOL) and I haven’t been to the hospital. I just didn’t sleep well for a few nights, so that, combined with the activity the day of Thanksgiving, combined with the impending doom on my health that is the holiday season… I’m not feeling my best today. You’ve got to understand, while I am less nauseous than I used to be and my blood circulates much better, I still can’t do much. I’m just more comfortable while I don’t do much. Where I use to lay in misery, I can lay and read. If I eat more than a few bites, I still become really tired from the blood going to my stomach for digestion, but at least my stomach digests the food. On the days I do get out, like Thanksgiving, it still needs carefully planned, but I am able to enjoy myself a bit more than before. My immune system seems to be able to fight off routine illness better. People are back to commenting how great I look and how they can’t believe I can look so good and feel so bad. These improvements are a big deal and have made me life more pleasant, but I still can’t live something resembling a “normal” life. I try and not think “why” or “how unfair” too often. In my opinion, it isn’t a healthy way to live. This has happened to me and I can choose how to feel about it. Wishing I wasn’t ill isn’t going to change this nor will thinking what I would be doing if I weren’t sick. Plus, there’s enough of you out there thinking this is unfair that I don’t waste my energy thinking about it too often. The best thing I can do is be proactive and do what I can to make my life a bit better. I feel each new intervention seems to give me some percentage points toward being 100% and I just have to keep racking up those points.
Despite this mindset, some days, I am just slammed with the reality of it. I am 24 years old. I have a college degree. I have done a lot of things in my life successfully. I take good care of my body. I have a positive attitude. I went from being full of life, able to do anything I wanted, to having all of these strange symptoms, some objective and measurable, others not. I have a supportive family. I’ve had access to excellent health care providers who agree something is wrong. If this were a movie or TV, medical professionals would get wind of the situation and tirelessly work until they get this poor young woman her life back. I’m here to tell you, even the best medical professionals give up. They don’t give up on me as a person or patient, but they do give up on their ability to find a cause. They do give up on figuring out the right type of doctor to refer me to. Some doctors continually brainstorm ideas of what could be wrong, but there isn’t a huge sense of urgency. Six years of my life have gone by, two of them spent mostly stuck in bed. To me, it is sort of shocking the medical community has accepted my low quality of life as a puzzle that cannot be solved and feel no sense of urgency in figuring out what is wrong with me. I know if any of my doctors knew what test to run or what treatment to give, they’d do it without a hesitation. This isn’t a rant saying doctors are horrible or I’ve been treated poorly or anything remotely like that.
It is just I am the one scouring medical literature for possible causes of my issues. I’m the one researching which tests could provide answers and how the tests should be done. I’m the one reading through clinical trials of various medications. I am the one researching the merits of various specialists and identifying which specialist is most likely to take me seriously. Let me tell you, most patients will find if they aren’t willing to be their own Dr. House to a certain extent, they’re just going to sort of sit in a mysterious illness limbo unless they suddenly heal. It is confusing to not have a diagnosis or root cause for your health issues. You don’t know if you’ll ever get better or not. You are constantly preparing yourself mentally for both getting better and not ever getting 100% (or 70%) better because either is a viable outcome since you don’t even know what is wrong. I don’t expect special treatment and I know there are so many other patients out there going through the same thing. They are just as alarmed as I am. To me, it doesn’t matter if this is happening to just me or to millions. Nothing can make it any less shocking or unbelievable that it is possible for a young woman’s life to float by her, with her only capable of participating in parts of it… and no one fully knows why… or is fighting to know why… except her and those who love her.
I just needed to get this out. I’ll now go back to my previously scheduled mental programming of avoiding thinking too hard about the reality of my situation, just accepting each moment as it is, appreciating the aspects of my life that are wonderful, and continuing to search for answers. While it is important to not be in denial and to work through coming to terms with being chronically ill, thinking a ton about the “why” aspects of disability too much doesn’t improve things, that much I have come to know!
Edit (1 hour after writing post): It’s strange how things work out. I just got off the phone with my Mom. Today my Mom talked to the geneticist who we are trying to get into to figure out what the heck is going on… The geneticist said he needed to know a little more info before “deciding what to do”. He has a really great reputation and is in high demand, so I’m guessing he’s trying to figure how urgent my need is. I’ve never been to a geneticist, so this would be a new approach and it makes me feel like maybe I won’t be in mysterious illness limbo for forever! Maybe he’ll be the doctor who says, “A 24 year old girl goes from healthy to this? I MUST figure out what is wrong!” A girl can dream.