I saw my rheumatologist 3 days ago and she told me the words I wanted to hear. The diagnosis I had rattling around my brain for months. What crazy person WANTS to hear they have something potentially awful? Well, me, and a lot of other people out there (more than you think) with general, vague symptoms. People who hope for abnormal blood work. People who WANT a positive test. It’s validation. Essentially we all want our struggles, pain, and setbacks to be validated, to mean something.
I had quite the mini breakdown the moment she asked me how I’d been. I hate that I get so emotional but how could I not when someone asks and expects to hear about all the pain I’ve been in? Who wouldn’t burst with a river of words, tears, and snot? Months of pain endured in silence came spilling forth and collided together in an almost incoherent mess. I practically went through a whole box of tissues.
You see, every day is a struggle. I don’t mean to get through the pain, that’s just what has to be done. What I mean is the struggle to not complain too much, to groan, or moan too much. The struggle to appear normal and keep it all tucked away. No one wants to hear all that fussing.
Everyday life becomes a hiding game.
When someone asks how you are doing, and you have pain on your mind, what do you say? Do you go “I haven’t slept a full night in months because the simple act of rolling over/adjusting wakes me up out of sleep”? Or perhaps you say “I’m super stressed out and anxious because my medical bills keep piling up and I just don’t make enough to pay them off in time and now a couple of them have gone to collections” You could even imagine saying ” I’m in pain all the time. I’m in pain so much of the time, I’m surprised when I’m not” You can’t say that. Socially you’ll be outed as a “complainer”. So you lie.
Oh, me? I’m fine! How are you?
me whenever someone asks
If it weren’t for the pain, I’d even question it myself. Am I REALLY sick? Could this all be in my head? Sometimes I think about stopping my medications just to see what would happen. Would I just fall apart? Would everything get worse? Or would I magically trick myself into remission? I’ve accidentally run out of some of my meds a couple of times, however, I can attest that it never ends very well. Unfortunately, remission isn’t something you can kick-start your body into.
Diagnosis: Non-radiographic Axial Spondyloarthritis
My rheumatologist confirmed my fears. Now I get to process the beautiful mess of emotions that go with this diagnosis. On one hand, I know I’m not crazy, and I right. We can now start treatment. On the other hand, however, I’m afraid of the future. What if the medicines don’t work? How long will they take to work? Is this the answer I was hoping for?
Due to the potentially disabling nature of spondyloarthritis, she decided to treat me aggressively. The Actemra injections are to be discontinued and I am to start 3 new drugs: Humira, nortriptyline, and sulfasalazine. I started the sulfa drug a couple days ago and it has given me some bad GI symptoms like stomach pain, loss of appetite, and a mean case of the squirts. Sexy. The nortriptyline, however, is actually helping and I’ve been sleeping better.
Well, wait, let me rephrase that.
I was starting to sleep better until my pharmacy called me yesterday to tell me the co-pay for the Humira was $200 AFTER the Humira savings card was applied. I hit the worst-case scenario, guys, not “what if the medicine doesn’t work?”, but “what if we can’t afford it?”.
Secondary Diagnosis: Up shits creek.
Pro tip: most pharma companies and even pharmacies can provide a kind of savings card/financial assistance for patients. Search for the drug and look for savings cards to see if you qualify for assistance programs. If there is one thing I have learned in dealing with these pharmaceutical companies, it is they will do what they can to maintain patients (read: “clients”).
Next steps
I called the company that makes Humira (Abbvie) and asked if there was something else they could do to help since I can’t afford $200 a month and they let me know they have a financial assistance program for patients who can prove financial need. I will apply asap and hopefully, I can start treatment really soon.
Getting this official diagnosis really does help. My back pain, however much it sucks, exists because my body’s inflammatory response decided to find a new victim. This is somewhere in my genetic code. It isn’t in my head. I even bought a shower chair to reduce my standing time and I can’t wait for it to arrive! Also, I’m in the market for a portable cane hair so I can get around easier.
…guys?
Overall, I’m still really hopeful
Maybe its the extra Z’s I’m getting, or the fact that we caught this progressive disease early, but I’m feeling just a bit better about my situation. Contrary to popular belief, getting a new diagnosis does not always mean the end of the world. Right now, it’s a good step in the right direction.
Wishing you gentle hugs, always,
lunabug
I want to go to a place where I can hold the intangible, and let go of the pain with all my might.
“Beautiful” by India Arie