Making Negative Progress

A dimly lit beach with the waves rolling in. A full moon peaks out from behind some clouds.

There exists a fine line that many people with chronic illness walk, and this line may be familiar for people who have busy schedules or dedicate a strong amount of time to either themselves or the relationships we’re in.

We pride ourselves in being able to maintain strong friendships where we can pop in and out as our life changes rapidly and pick up exactly where we left off, not having lost the strong foundation. And these relationships are wonderful, I appreciate them so much. Except when we want to reach out and catch up, sometimes we have so much to say but so much of it feels like a complaint, that we end up not reaching out. We desire a space to be able to vent and express how everything is just turned into this monumental load that we need a break from carrying alone.

But because of the rather distant friendships we rely on, simply venting about an in the moment problem requires what could be months of backtracking and explaining the history that has led to this moment. Which is exhausting.

It’s the space I find myself in now.

Sure, there’s plenty of people I could reach out to who would openly just let me express frustrations, but I hate to continuously lay that burden on people who have their own heavy loads. Lord knows, we all are carrying heavy loads right now.

And I’m thankful I have this space. The last year has shifted the use of my blog, especially with the addition of my Patreon page where I tend to keep the more personal of updates, but I believe it’s time to allow some of my personal experiences to spill back into my public domain.

Specifically as it pertains the backwards progress I seem to be making in every area of my life.

Moving across the country was a large disruption to my health care. It prevented me from seeking out an OBGYN after ending up in urgent care this January, because that doctor had told me to follow up with my OB, but in January I didn’t know if I’d be moving in February, March, or even May, so trying to get established with a new doctor didn’t make any sense.

Adding in a global pandemic to the mix certainly didn’t aid in my continuing health care either. It pushed back my move date, disrupted my birth control shots, and left me unable to get more answers regarding the sudden loss of function and pain taking over my hands.

Since March, every choice I’ve made in attempt to make some progress towards managing my health has actually moved me further away from the goalposts. I imagine I feel a lot like Clay Matthews did in his last season in Green Bay with the new tackling rules only being called against him, pushing his progress backwards despite every effort he made to abide by the ever changing dynamics of the game around him.

In being unable to fill my birth control script, rather than opting for a pill to replace my injection I thought it would be a good opportunity to investigate if the shot had perhaps been causing some of my lower/background pain of my migraines. This decision sent my hormones spiraling out of control and resulted in one of my highest pain months since being disabled by migraine. Now, my entire reproductive system is misfiring and there’s no clear indication as to when it will level off, even with the introduction of a new pill to try and help.

Yes sorry I’m talking about birth control because this shouldn’t be so taboo especially when BC is often used to manage chronic conditions not solely pregnancy.

Having little success with migraines, and having more pain, specifically more dramatically increasing pain over a short period of time compared to a slow developing migraine, I decided to request the new Ubrelvy medication from my Neurologist. The samples I had showed 50% success, so it would be worth having around to help.

Except, my Neurologist ignored my initial request, forced me to request an appointment, and then has failed for the last month to actually submit the proper prior authorization paperwork. I spend roughly two hours every morning going back and forth with my mail order pharmacy for a status update, getting direct phone numbers, and then reaching out to my doctor to urge them to complete the paperwork. I’ve finally landed on the complaint phone number, to which I cannot connect to anyone.

I sent off a final message this morning, but I’ve exhausted my resources trying to get the prior authorization. I have no idea if I’ll ever actually get this new migraine medication.

Which brings me back to the decision I made to keep my Neurologist in Charleston. March began with the Mayo Clinic rejecting me as a patient. And somehow I thought that might actually be the worst thing to happen in 2020… But they rejected me, and in understanding how complicated my case is and that general Neurologists do not specialize in headache medicine, the choice to fly back to Charleston once a year to maintain the doctor who best manages my care made sense.

Except now, it feels like no one is managing my care. It feels like no one cares.

The neglect surrounding a simple prescription leaves me knowing that I’ll likely have to find a local Neurologist much sooner than anticipated.

(This is hell, but for anyone on my Patreon, you’ll know I’ve started an exclusive blog series dedicated towards a deep scientific dive into my medical history so that when the time comes to see a new Neurologist I’ll be armed with everything they could possibly need to know.)

I have however made progress getting a new primary care doctor, but aside from that everything from there on continues in the backwards trend.

The simple act of needing allergy medicine refilled has stopped being simple. My new doctor hasn’t heard of my mail order pharmacy. My mail order pharmacy isn’t able to pull up my new doctor’s information. The brand-name medication is no longer covered by my insurance, so the prescription can’t simply be transferred like normal. I don’t have the fax number for my new doctor. And now that I’ve finally gotten some answers, the person I need to connect with is in meetings all day. So this is just one of the call backs I’m waiting on.

The new doctor was able to order the autoimmune blood panel to investigate the hand pain. Most things came back negative, except for the test showing I do in fact have antinuclear antibodies in my system.

This seems like forward motion, but not quite. I need more blood work and have to hope that a Rheumatologist accepts my case so I can have an appointment with them to further identify what, if any autoimmune disorder is present. I have to hope that my case gets accepted. Never in my experience with health care and specialists have I wound up in a position where the doctor gets to decide IF they want to see me. (Mayo Clinic obviously excluded.) Another call back I’ll be waiting on.

But wait, there’s more.

In understanding what an antinuclear antibody is and what it means, we must return full circle back to the conversation of the global pandemic. That antibody implies that parts of my immune system are attacking itself. If my immune system is attacking itself, that means that the immune system is working overtime, which naturally weakens the immune system, meaning that my body’s ability to fight off a dangerous virus such as COVID-19 is much lower.

Now stick with me.

When they first released conditions that increase risk for the virus, the list contained “Epilepsy” without further explanation. My migraine medication is actually an epilepsy drug. Which brought up my initial concerns in February for my personal risk perhaps being higher if the drug itself causes a weakened immune system. This was then compounded by the potential of having Rheumatoid Arthritis and further having a weakened immune system, needing to be put on a drug that intentionally suppresses the immune system, or worse not having access to the treatment altogether because that’s the drug being used to trial in use for Covid. But again, stick with me.

The test showing I have the anitnuclear antibodies can have a false positive in a few cases. One of these cases is if you use an anti-seizure medication. An epilepsy drug.

Which I use.

So what on earth does this all come together to mean if you haven’t put two and two together on your own? My blood is showing my immune system is weakened, either due to an unidentified autoimmune disorder or my medication, meaning I now have medical confirmation that I am at higher risk of having a severe/deadly reaction to contracting COVID-19.

Which is sort of a polite fuck you I told you so to everyone who brushed off my concerns.

I have now moved backwards in every single area of my life.

My migraines are worse and now I can’t access my medications.

My reproductive system basically jumped off a cliff.

My wallet is also jumping off the cliff because of all the additional costs of personal hygiene products required as a result of the above.

I might be able to see a doctor to confirm wrist pain being caused by an autoimmune disease, but my current medication confuses that so it could just push out answers for months.

Even though everyone else can begin venturing out into the world as restrictions ease, I cannot because I have a definitive “you are high risk” from my blood work.

Everyone else around me is continuing to get more relaxed with how they interact with the world and the regard for the safety of those they live with continues to get smaller and smaller, further increasing my risk in my own home.

And to cap it all of, I had been under the assumption that much of the plans for my new kitchen were rather concrete, but my dad (unaware of the total dumpster fire that is my brain at the moment) decided to backtrack on the flooring for the entire kitchen room.

So even my plans for building my kitchen are moving backwards.

And if you made it this far, thank you. Thank you for being the ear that I needed today.

A.


If you’re interested in further supporting my blog and unlocking access to exclusive updates I’ve mentioned in this post, consider becoming a patron on Patreon. Proceeds go towards covering medical expenses and furthering migraine and headache research. You can learn more and sign up here.

Cover page of my life my migraine patreon where "Alex's Migraine Journey is creating awareness for migraine, chronic illness, and disability"

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