Sifting Through the Weeds...

Here I am once again planting another blog post. I wasn't going to do any writing this month, as I usually take a break. I decided this was something that needed to be addressed. 

This year has been full of changes. As I mentioned early on in this blog, growth and change can be painful. One of the ways to help maintain a healthy garden is to get rid of the weeds. Let me expound on that in the next paragraph. 

June 2nd was my 34th year work anniversary. That was something back in 1991 when I was first diagnosed with rheumatoid arthritis (RA) that I thought would probably never happen. There were a lot of weeds to sift through. It was all a mess. Knowing what I knew about others living with this disease, I felt like it was only a matter of time before I would be going down that road of disability. In fact my first rheumatologist thought I should quit my job, go on disability and have my husband take care of me. Shouldn't I have been encouraged with help in navigating this disease? He just wanted me to give up. Let me explain how this whole journey began in the next paragraph.

Not even being told outright that I had rheumatoid arthritis (RA). It went something more like; "This is going take us longer than we thought." Is that how you convey something so life-changing to a patient? Absolutely not! Communication is a big issue with me and this did not cut it. 

Getting back to my 34th anniversary. I am proud of what has been accomplished even without the medical community's support. I fought hard to keep my job, as it was suggested that I consider part-time. Why? What good would that have done to have me wither away and not be allowed to remain a part of the working class or even worse, be considered a burden to society. 

I continued to sift through the weeds. I eventually left that rheumatologist because his support was null. Telling someone they are going to get worse through a conversation that he had with my primary care physician at the time. Again, not sitting down with me, the patient and explaining what the next steps would be. I felt helpless and hopeless. 

Fast-forward 31 years later and my life is so much better. I finally found a rheumatologist who believes in me and for almost 3 years have remained in clinical RA joint remission. It's the 2nd time it has happened and I never gave up HOPE that it would be possible again. 

I said it has been a year full of changes. This year the clinic I have worked for starting my 35th year was acquired by another company. I'm grateful my years of service were recognized and not have to start back at square one. Next year however, could prove to be challenging. I'm expecting to have a battle on my hands. Let me expound in the next paragraph.

I will be dealing with an entirely different insurance company. That means a new Pharmacy Benefit Manager (PBM). I'm familiar with this process because of the class of medication I take for my RA. It has to go through prior authorization (PA). I also have to have it dispensed by a specialty pharmacy. The Pharmacy Benefit Managers or what I refer to as the middleman, call all of the shots. It all boils down to money. The patient (me) has no say in the matter. 

As you know I'm an advocate, but I would like to know who has my back? I may also end up facing an even bigger hurdle. Who is going to do the paperwork for the prior authorization? It's usually the office of the prescriber who does so. The problem is my current rheumatologist is out of network. That means that I would end up paying out of pocket for all of his services, unless I could get an out of network referral, which could quality for services at a tier 1 level or simply be considered in network.

It will be a little more complicated next year. I have already contacted who would be considered my in network provider, but they are not taking new patients at this time. So my only recourse would be to use providers that offer telehealth. Again, who would end up prescribing my medication? How are they going to know by seeing me through a Zoom call how I am doing? To say I'm frustrated and angry, would be an understatement. I can't be the only PATIENT who will be facing this dilemma. 

My only recourse and one that seems logical to me, would be to apply for an out of network referral and explain that the rheumatology practice that is in network, is not taking new patients at this time. This is a form that would need to be filled out by my primary care physician. I need to be seen in person, not use telehealth. I only see him every 6 months. Why must this be so difficult to navigate?

You probably are wondering how I know so much about sifting through the weeds. I have advocated for myself for a very long time. I'm a member of the Global Healthy Living Foundation's 50-State Network. 

https://www.50statenetwork.org/

So again, who really has my back on all of this? I am tired of sifting through the weeds on my own. I am hoping to be able to get this cleaned up in the next few months of 2023. 

I hope the holidays are kind to you. As some of you know, I struggle during this time of year. It will be my 12th Christmas without my mother. My sister and I have been having weekly visits over the phone and I told her yesterday, that I hate this time of year. She could tell by our phone conversation that I was struggling, because I mentioned that my pain was bad too. She offered to pray for me as she always does at the end of our calls. 

I hope you find help in sifting through your weeds. Don't be afraid to ask for help. 

I leave you with this poem about something that needed to be weeded out or better yet, evicted. 

❤Brenda