Some days are diamonds. Every day that I can run and not have to stop to walk or quit because the pain is too great is definitely a diamond. The days my joint pain is minimal and I have energy to spare are diamonds also. I have more diamond days than stone days compared to when I was in the thick of the reaction to Humira. Unfortunately, stone days are always just around the corner and the hard times just won’t leave me alone. These past few weeks, I’ve had a lot of stone days. I suffer from seasonal affective disorder and my constant colds, bronchitis, and sinus infections in winter are enough to make me want to hibernate and never go anywhere but there’s something more to this depression than just the usual cold sting of winter and darkness. I wake up some days with an empty feeling that no pill, strong run, or even pommie snuggle can fill. Is it the winter? Is it the constant sickness? Is it the doctors who still won’t listen to me or do any research beyond what they can fit into my 10-minute appointment? It’s a combination of it all and a little bit of “fed up” thrown in there for good measure. This year has started off no different than most years. Maybe even a little bit better since last year started with a very nasty case of Covid that nearly lead to me being hospitalized. As usual, I’ve spent an absurd amount of time at the Walter Reed National Military Medical Center. On a positive note, they’ve gotten super-efficient. I should be on call as a consultant to help rate policy and procedure improvements because I spend so much time at the ER that I can even rate the various RNs and other medical professionals over the years. My most recent experience was great. They got me back almost immediately, they took a few minutes to look at my record and saw that I’m high-risk then swiftly moved me through testing, radiology, then straight back to a room with a glass door. Cozy, safe, isolated, and decent cell service. My only recommendation is maybe some Wi-Fi with the password clearly posted on the wall. It was the post-ER visit that went wrong. I am put on antibiotics within a split second of any sign of sinus infection because I have so many throughout the year and when they get bad, oh they get bad. My 3 week cold was moving into both my sinus and lungs; inhaler for the bronchitis and an antibiotic for the sinus infection. Unfortunately, the antibiotic tried to kill me by way of my GI tract and when I spoke with the doctor in primary care to figure out what I should do, she actually said, “no one has been sick for a while because of the masks, you just forgot what it’s like”. Um, excuse me? Maybe take a look at my chart for a quick second. The ER Nurse Practitioner who actually looked at my chart saw my history and immediately prescribed an antibiotic. Look, after everything that has happened to me, there is no better way to trigger me than to 1. Not look at my medical history and medications and 2. Take on an attitude as if I don’t know when something is wrong with me. My greatest achievement these past couple of weeks was not getting banned from Walter Reed for giving that doctor a piece of my mind. Not surprising I had another follow up. I have not been the same since the reaction and I’ve been told many times that I may never fully recover. This past week, I’ve been having a lot of the same symptoms I had when the reaction first began. Yes, I’m panicking. Yes, I am researching every single drug I’m on. I was hoping that maybe a doctor could look at my drug list and give me a quick opinion based on the knowledge that I’ve had a severe reaction to Humira that caused MS and lupus symptoms. Nope. I was completely dismissed and told to continue my meds and just wait and see. Um, check the computer. I’ve been through hell these past 3 years. Maybe an extra 4-5 minutes in this appointment to see why this is getting worse? It’s this that sort of triggered a lot of stone days for me. The emptiness is a lot of things but mostly it’s that doctors don’t seem to value my life at all. They are not doing even a minute of research outside of my appointment time. They are often dismissing me or not even bothering to read my medical record (except you Super Nurse Practitioner from the ER, you’re a rock star). There aren’t words to describe the sadness I feel knowing that no one values my life at all. Lawyers are checking statute of limitations and weighing whether or not a jury would find sympathy since I didn’t die or lose a limb. (are you kidding me?) and the doctors I saw over that 19 month period have not even bothered to do the absolute least-say sorry. I’ve only gotten a shoulder shrug. One would think that if you prescribed a drug that caused this much damage to a patient, you would want to know everything, so it doesn’t happen to any more patients. But you’d be wrong. They don’t care. This realization has drug me down lately and it’s pretty dark. I can’t make doctors care but what pulls me out of these dark days is my resolve to make sure this never happens to anyone else. Why did it take 19 months to diagnose me? Was it lack of care? Incompetence? An overburdened medical industry? An FDA that lacks proper policies and procedures around adverse reactions and how they’re reported then communicated to the public and prescribing doctors? I’ve submitted FOIA requests, pulled medical guidelines, and even started a database for other people who have suffered a similar reaction. These days are difficult but it’s my resolve that gets me through. The resolve to ensure better legislation, better policies and procedures, and better conditions for medical professionals leads to no one ever having to suffer from lack of care or knowledge. I don’t know if I’ll ever get back my trust of doctors but I know the best diamond day is on the horizon—I just need to remember to get through the hard times and cold chills so I can make it happen.
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