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While I’m here…

When I first moved to New York, I lived with my nana. And she would go to different places for her hair. One place for color, another for cut, a special place for scalp treatments, and another to have it set in rollers to sit under the dryer. This same woman cut coupons for canned soup and wore costume jewelry with her mink. She wore nothing but Escada and Oscar de la Renta, but she would take the bus to the Lower East Side for alterations to save money.

I grew up with a mother who’s mantra for life was take my money, save my strength’ She would pay $5 to valet park the car at the Dollar Tree….the point of these examples is that— I never questioned a lot of things things in my life that didn’t make sense, because I assumed that there must be valid reasons for the way things are done. And it wasn’t my place to question or challenge authority.

As I got older and started to realize that maybe my nana and mother didn’t have such solid arguments for their habits, I began to question a lot of other things that didn’t make sense. Like a lot of problems that seemed to have simple solutions. The funny thing is that every time I came up with an answer to a challenge in my life, these two particular women would tell me that there must be a reason that it hasn’t been done already.

Then my health started to get the best of me and I had to stop working. I am on Medicare in my 40s because of my disability. There is a misconception that people on disability are riding high off the hog. There is some notion that we are receiving a fat monthly check and free medical insurance coverage while we hang around watching TV. The reality is that

Part A & B only covers 80% of my medical expenses accepted by a participating provider.

Part F is my supplemental plan that covers the 20% gap. The premium is $350 per month.

Parr D is my prescription drug plan that is another $40 per month.

Here’s where my childhood experience comes into play….My psychiatrist and Pain Management Doctor don’t accept Medicare. So I pay them out of pocket because my mother’s mantra rings true, and the strength and trouble of starting over with new doctors who don’t know my background and history is a daunting task

My particular condition which includes Psoriatic Arthritis has destroyed my Temporomandibular Joints. But because the TMJ is not categorized as a specialty by the Dental or Medical profession, Medicare excludes it from coverage. So, if my psoriatic arthritis destroys my hip, knee or wrist-surgery is covered. Unfortunately, my 25 surgeries have all been excluded, as well as the surgical orthodontics required to complete my treatment.

My TMJ disorder was diagnosed by a dentist when I was 15, and he operated by repairing and removing my discs and inserting Silastic and Proplast implants. Those implants caused a giant cell reaction that triggered my psoriatic arthritis which continued to deteriorate my joints and cause an inflammatory process that ankylosed (fused) the mandible to my skull.

Over the last 30 years, oral Maxillofacial surgeons have performed more than 25 operations to restore my jaw function. In 2014 my hands and feet were covered in weeping sores and I could hardly walk. I had bandages covering every fingertip, and I asked the surgeon to please test the rash because I was afraid of contracting MRSA during my hospital stay. He told me that he would biopsy it during surgery.

When I went for my post op appointment and asked for the results, he told me that he’s not a dermatologist and I should have someone else look at it. I went to the dermatologist who had been giving me cream and calling it dermatitis, and I insisted that she biopsy my foot. The test came back positive for psoriasis. She said that it didn’t present like typical plaque psoriasis and that’s why she missed it.

Once I had the psoriasis diagnosis, I called a rheumatologist who specializes in Psoriatic Arthritis and made an appointment. The nurse who schedules the calendar said ‘the doctor only sees patients with psoriatic arthritis, are you sure that you have that?’ I said yes and went to see the doctor. When I got to the appointment he asked me to touch my toes, and I told him that I haven’t been able to do that in about 20 years. He ordered bloodwork and an MRI and asked me who diagnosed me with PSA. I told him that I diagnosed myself after 30 years of failed surgery on joints that are compromised by an autoimmune disease.

The results came back and my bloodwork showed markers for the antigens HLA A2, HLA A3, HLA B7, HLA B35, HLA CW4, HLA CW7 and my MRI showed sacroiliac spondylitis. I began taking Humira and methotrexate, but the rheumatologist knew nothing about the TMJ. Nothing. I brought him published medical journal articles about how PSA can affect the TMJ before presenting in any other joint.

The significance of all of this lies in the fact that having independent verticals of medical specialists and keeping dental, vision and mental health separate from medical is dangerous and violates the Hippocratic oath. My psoriatic arthritis affects my vision, teeth/jaw, and mental heath. The dry eye and inability to close my left eye all the way means that my prescription keeps changing, but I don’t have vision benefits for glasses or check-ups. I don’t have dental insurance, and my bad bite causes tooth loss and gum infection which totals thousands of dollars in out of pocket expenses each year. My jaw surgeries always require surgical braces, the braces are used to wire my jaw shut and to adjust the teeth so that the bite functions after the new joints are placed.

Orthodontics are not covered by insurance and the $10,000 fee per surgery has cost in excess of $90,000 out of pocket without any reimbursement. Splints, nightguards, retainers, therabites, travel hotels nurses

To make matters worse, I have been unsuccessful at changing the landscape of the Oral Maxillofacial Surgery community even with the resources that were at my fingertips. My father in law was the president of the ADAssociation, and he had no interest in broaching the subject. Even today, as he works diligently to try and take down Smile Direct because they are undermining the dental profession’s ability to make money, I try to explain that more importantly is the damage that their product is causing to the jaw joints of unsuspecting consumers.

So to make a long story a little less long… the answer to this problem is to integrate everything. Not just dental and medical. I am not talking about having primary care doctors give fluoride treatments. I mean having a dentist in the same office with a primary care physician, so that when you go for your annual check-up you can get a cleaning and an exam. And the doctor will communicate with the primary care about the overall health of your mouth.

Then you move over to the optometrist who examines your eyes and updates the chart with the health of your eyes and updates to any changes.

Finally you check in with a psychiatrist to evaluate your mental health and adjust and medication you are taking and give referrals for therapists that specialize in areas where you are struggling or need support. If you need a letter for an emotional support animal or accommodations for work or school. This is the place.

While I’m here can I speak with the pain management doctor about my chronic illness. Because if you want me to try Yoga or acupuncture, then I need you to find a place that takes insurance or you need to start offering it here.

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