Another Week, Another Set of Diagnoses

Last Thursday, I found out I have a tumor in my left knee. If I’m honest, I’m pretty upset still that my rheumatologist didn’t tell me. That’s not something that anyone should find out from x-ray notes.

The whole reason I had gone digging was to find out why a referral hadn’t gone through. It was listed on my visit details that day, but I never got a call. After six weeks of waiting, I managed to corral my doc into putting the referral in correctly. I’ve learned I have to do that with her lately, and it’s frustrating.

Luckily, with freezpocalypse upon my state, I was able to miraculously get in to the pain management physiatrist to evaluate my knee pain. Turns out, I’ve got a few new diagnoses to add to the list.


Generalized Hypermobility Spectrum Disorder

Basically, this means I’m stretchy, but not quite into Ehlers-Danlos Syndrome (EDS) territory. You can check out the handout my doc gave me here.

I’m going through PT again. This time, though, I’m working with a hypermobile aware therapist. I think it’ll make all the difference – even though I love my old PT, too. She also runs a tai chi class specifically for hypermobile patients that I’ll be joining.

I’m adding new items to my repertoire, too, to help stabilize joints.

Iliotibial band syndrome of both sides

This causes knee pain with certain movements. That pain is generally located on the side of the knee whereas something like patellofemoral arthralgia – which I also have – causes pain in the kneecap.

A lot of the issues this causes will be addressed in PT. Some custom orthotic shoe inserts will help, too.

Suspected Postural Orthostatic Tachycardia Syndrome (POTS)

One of the things that often goes along with Mast Cell Activation Syndrome (MCAS) and being stretchy is POTS. It’s a circulatory disorder that presents symptoms when someone changes positions. Standing up from any position can bring it on especially hard.

Compression stockings are supposed to help a lot with this, so I’m on the lookout. There’s a lot that I have to buy now. If you want to help, here’s my Amazon list.

I’m glad that these things that I suspected were taken seriously finally. It’s wild to me that I actually know what I’m talking about with my body. It shouldn’t be, but that’s probably how it is for a lot of us.

On top of it all, I’m muggle sick right now. I swear, I sound like Bobby Brady as his voice changes… but maybe that’s because I’m just thinking about the many upcoming changes I have to start making.

Why I Always Read My Procedure Notes

Why I Always Read My Procedure Notes

Yesterday I found out that I have what is called a bone island in my left knee.

This is usually just a benign tumor in the knee. For me, it’s located where the top of my knee meets the bottom – the lateral condyle.

It explains part of my pain. After all, my left knee is by far my worst joint. I think it always has been. However, it gave me a major anxiety attack yesterday because I found this reading notes in MyChart as opposed to being told… But also because these can be the beginnings of cancer.

And I didn’t need to learn that from a laptop screen.

Narrative  **THIS IS A SIGNED REPORT**  XR KNEE MIN 4 VIEWS 12/7/2018  INDICATION: patietn with hypermobility and soJIA please evaluate knee pain patietn with hypermobility and soJIA please evaluate knee pain  COMPARISON: October 9, 2015  TECHNIQUE: Frontal, lateral, Rosenberg and sunrise views of the left knee.  FINDINGS: There is a bone island in the lateral femoral condyle. No fracture or osseous lesion is evident. Joint alignment is normal. Joint spaces are well-maintained. No joint effusion is seen. Soft tissues are unremarkable.

Naturally, my anxiety spiked way the fuck up. I’m still fatigued from that anxiety attack. I’m exhausted and nervous. Chances are that it’ll stay benign, but that’s not easy to tell myself when I’m so often the zebra in a room full of horses.

When I had my spine MRIs, I learned that I had a bulging lumbar disc. While not uncommon, it also changes how I handle things. It explained a lot about my back – the pain, spasms, etc.

Knowing also means I take it easier on my back. I’m not as mean to it as I might otherwise be.

These bits of information in our procedural notes often go untold and unexplained. We may never figure this out without checking ourselves or having another provider read those notes.

This brings me to a number of questions:

What if I didn’t have access to these notes? Or if I didn’t have the health literacy to navigate them?

And what about shared decision making? I can’t fully participate if I don’t fully know what’s going on. As a sex educator, I know that informed consent can’t be given if you’re not informed. Providers have to hold up their end of that bargain, whether it’s my rheumy or the radiologist.

How many of us are walking around dealing with unnecessary pain and more that might be listed in our medical files that we don’t know about?

If you can get access to them, always get and read the notes from the procedures you go through.

ACR Responds to CMS Medicare Part D and Medicare Advantage Proposed Rule

The following is today’s press release from the American College of Rheumatology:

In comments submitted to the Centers for Medicare and Medicaid Services (CMS), the American College of Rheumatology (ACR) expressed its continuing concern with a recent CMS policy allowing Medicare Advantage (MA) plans to utilize step therapy for Part B drugs. In the comment letter, rheumatology leaders urged the agency to establish safeguards to protect beneficiaries from potential harm.


“While we appreciate the agency’s efforts to make prescription medications more affordable, we have serious concerns regarding the decision to allow Medicare Advantage plans to implement step therapy for Part B drugs and cross-manage Part B and D drug utilization,” said Paula Marchetta, MD, MBA, president of the ACR. “We begin the 2019 benefit year with no safeguards in place to protect beneficiaries from changes that could seriously threaten their access to needed medications. At a minimum, CMS should immediately issue updated guidance that will clarify patient protections for the current year and beyond.”


Step therapy, sometimes known as “fail first,” is a utilization management technique employed by most health insurers that forces patients to try medications preferred by the insurance company before approving the medication prescribed by the patient’s doctor – even when there is no evidence the “insurer preferred” option will be effective. This practice often leads to delays in patient access to appropriate, evidence-based treatment and undermines the clinical expertise and judgment of health care providers.
In its comments to the agency, the ACR urged CMS to establish the following safeguards before moving forward with its step therapy policy:
  • Make clear that a patient’s provider must determine if a patient “fails” a treatment. This decision should not be made by another entity such an insurance company.
  • Provide exceptions to step therapy if:
    • The treatment is contraindicated for a patient’s specific condition.
    • The provider determines, based on medical evidence, that the treatment is likely to be ineffective, likely to cause a harmful reaction, or impede the patient’s ability to perform daily activities or responsibilities and/or adhere to the treatment plan.
    • The provider believes the new treatment will put the patient’s life in jeopardy or irreparably harm his/her physical or sensory functions.
  • Require MA plans to disclose that Part B drugs may be subject to step therapy in the plan’s Annual Notice of Change and Evidence of Coverage Documents.
  • Implement a 365-day “lookback” period for Part B therapies instead of the current 108-day period used in Medicare Part D plans.
  • Preclude plans from implementing step therapy via a different utilization management process such as prior authorization.
  • Increase monitoring of plans’ usage of utilization management practices and require that all denials include the clinical rationale for the decision while making clear a beneficiary’s appeal rights.
The ACR also commented on CMS’ decision to make changes to the Part D program, namely the agency’s new requirement that drug pricing information and lower-cost therapeutic alternatives be included in the plan’s Explanation of Benefits document. The ACR commended CMS for implementing a ban on “gag clauses” that prevent pharmacies from disclosing if a drug’s cash price is lower than the price with insurance. It also urged the agency to consider establishing common definitions for terms used during plan negotiations with Pharmacy Benefit Managers.


“The ACR is dedicated to ensuring that rheumatologists and rheumatology care professionals have the resources they need to provide patients with appropriate, high-quality care and that safe and effective treatments be available to all patients at the lowest possible cost,” Dr. Marchetta concluded. “We appreciate the opportunity to respond to this proposed rule and look forward to serving as a resource for the agency as it continues its work.”
Posted in ACR

ACR Recommends CMS Make Drug Pricing Demonstration Voluntary

The following is a press release from the ACR from this last Thursday:

In comments submitted to the Centers for Medicare and Medicaid Services (CMS), the American College of Rheumatology (ACR) urged the agency to proceed with caution when considering the International Pricing Index (IPI) drug pricing model, which was announced in an Advance Notice of Proposed Rulemaking in October. The ACR is concerned that, without substantial changes, the demonstration program could disrupt patient access to care, worsen the rheumatology workforce shortage and exacerbate geographic disparities in access to medical care.

“We appreciate the opportunity to provide input on the proposed IPI model and are encouraged by the agency’s efforts to make needed therapies more affordable for patients,” said Paula Marchetta, MD, MBA, president of the American College of Rheumatology. “However, we believe that changes must be made to ensure the proposal does not result in significant disruptions in patient care for the 54 million Americans who live with a rheumatic disease.”

Specifically, the ACR recommends that the IPI demonstration:

  • Be voluntary. Participation in this demonstration must be voluntary for providers and must include a way for them to exit the program if they find themselves unable to meet the administrative and financial changes required. Furthermore, the proposed demonstration should be reduced in size and scope and encompass a significantly smaller percentage of Part B drug administration to avoid disruptions in patient care.
  • Reduce financial risks and administrative burdens to physicians. In order to avoid disruptions in patient access to treatments, ACR opposes any increased risk to patients and practices as a result of the demonstration. The ACR is concerned that the proposal to have providers collect patient cost-sharing payments would create serious financial risk and administrative burdens for physicians, particularly those operating small practices. Instead, the ACR recommends that if third-party vendors are tasked with drug procurement and distribution under the proposed model, that they also collect the payments themselves or pay providers a fee for the cost collection. Other administrative changes were suggested in the ACR’s comments.
  • Measure the impact on patient access to inform future developments. CMS should continuously track and report measures such as prescription adherence, out-of-pocket costs, and disease outcomes throughout the demonstration to ensure the model does not compromise patient access or health outcomes in favor of lower costs.

Over the summer, the ACR released a set of policy principles that must be at the forefront of any policy effort aimed at reducing drug costs for chronically ill Medicare patients. These principles include prioritizing patient access to affordable treatments while ensuring steps are taken to support shared decision-making between patients and providers.

“The ACR is dedicated to ensuring that rheumatologists and rheumatology care professionals have the resources they need to provide patients with appropriate, high-quality care,” Dr. Marchetta concluded. “We thank CMS for providing an opportunity to offer our input and we look forward to serving as a resource for the agency as it works to lower drug costs for Americans with chronic illnesses.”

To view the comment letter, click here.

Posted in ACR

My Liver Is Happy Again – And Other Updates

It’s been a few months since I wrote some updates… or much at all on here.

Gussy snuggling under my teal comforter while we watch the Bucks in the background

I’ve been focused on taking care of one of my guinea pigs, Gussy. Since the week of Halloween, he’s been struggling with health issues. After trying a number of things, we discovered he had an abscess. He’s getting medicine twice a day as well as a lot of cleaning (thanks, diarrhea) and love.

You drop everything when a loved one is basically in the ICU, especially if you’re the one providing care. I’m finally getting back to taking better care of myself.

Liver, Nortriptyline, and Migraines – Oh, my!

Back at the end of October, I had to come off of my nortriptyline for a gastric emptying study. Since being off of that, my liver values have normalized. It proved to me that, 1) that med was sending my liver over the top, and, 2) it wasn’t doing anything for my migraines.

I’ve been able to control my migraines more by controlling my MCAS symptoms and triggers. That, and PT for my neck, anyway.

My heart rate has gone done since coming off nortriptyline, too.


I certainly have been slacking on some of my MCAS stuff. The good news is that I have a lot of people reminding me to handle it.

My sensitivity to scents is a lot stronger than I really realized before. Things like deoderant are doing me in. I am, at least, being able to handle the reactions after the fact… for the most part.


My gastic emptying study was a long day. Four hours of dicking around in the hospital after eating radioactive breakfast.

They found I have a borderline delay in gastric emptying. That means that I don’t have full-on gastroparesis, but I also don’t not have it.

Part of what I have to do now is work towards finding easily digestable foods within the low FODMAP label.

The other thing I have to consider is that my cholesterol is a little high.


Now that a new year is starting, I’ve got new dental insurance to – hopefully – address some more of the dental issues I’ve been dealing with.

Now if everything could start costing less…

9 Helpful Gifts for Your Disabled Loved One

'9 Helpful Gifts for Your Disabled Loved One' written against a wooden background with wrapped presents

While I normally don’t talk about what gifts are helpful for those of us living with disabilities or chronic illnesses, I wanted to break with tradition this year and share some of my favorite gadgets and gizmos.

What changed my mind? Well, I’ve spent the last few weeks taking care of one of my guinea pigs. He’s been dealing with inflammation, pain, and an infection since the week of Halloween. If I could, I would love to get anything and everything that would be able to help him get lower pain levels.

This post contains affiliate links. That means I may monetarily benefit from you purchasing anything on this list. That said, payment for affiliates never comes at your expense. I also would not be promoting anything I didn’t personally appreciate, agree with, or review.



Benepod is a new type of contrast therapy device which utilizes both hot and cold simultaneously to fight pain. By applying both hot and cold at the same time to a particular point on your body, the Benepod engages your bodies natural healing abilities by introducing a sensation known as the thermal grill illusion.

This device is used with a USB-C cable and must be plugged into a power source during use.

The research for the Benepod started back in the 1990s, meaning the company has been working hard at improving the device design to bring us the best possible one.

You can read my review or snag the Benepod on Amazon.


lotion bottle

Fay Farm CBD Rejuvenation Lotion

This lotion contains CBD, essential oils, and even magnesium. It leaves the skin happy and healthy without the greasy feeling a lot of powerful lotions can leave behind.

You can read my review and snag this in 2 oz or 8 oz.



Tens Unit screen lit up blue

Tech Care Pro TENS Unit

I’ve tried a number of TENS units, and this is the best one I’ve found for my own pain. The unit itself is light, compact, and easy to use. While it doesn’t have a pause button, it is powerful and I’ve never had to use it on medium levels at all.

You can read my review and snag your own on Amazon.


Oska Pulse with box, charging cable, and strap


The Oska Pulse has the cutest name backstory involving helping a koala recover from injury.

The research is there that Oska works – they have a ton of journal articles and research on their site for your perusal. It’s much more a device for preventing pain than treating immediate pain.

You can read my review and SAVE big! For the rest of the year, Oska is on sale for $344 if you use the code NSSD here.


Image result for quell


While my review was on their first edition, the new model is 50% smaller. It’s comparable to the size of a credit card now, making it less obvious that you’re wearing something on your leg. It has more power and more intuitive – it can adjust power on its own depending on your body positioning.

You can read my review. The code HOLIDAY30 saves you $30 off the Quell starter kit for the rest of 2018 here.


axon optics box with glasses case

Axon Optics

I would not be alive if it weren’t for my Axon Optics and, no, that’s not an exaggeration.

My migraines were so awful over the last year that I was in a really bad place. My glasses were one the one thing that helped me get through my day. They help filter out some layers of light which have been shown to cause or worsen migraines. While these may not work for everyone, they’re a must – especially for those of us who stare at screens all day.

You can read my review and snag yours on Amazon.


selfie of K with short black/brown/purple hair sticking up; they have on a brown paisley Vog mask


Thanks to Kenzie, I got my first Vogmask. As I’ve started to remove allergens from my life due to MCAS, it’s become incredibly important for me to have a mask on me at all times. The Vogmask is compact, easy-to-carry in my bag or pocket, and look snazzy.

You can get yours from Amazon.


FaSoLa Portable Weekly 7 Days Pills Organizer Case Round Medicine for Travel Drug Holder

FaSoLa Pill Organizer

I love this round pill organizer! I put all of my emergency medications in them – and, yes, I have seven now. It’s compact enough to fit in my bag, but big enough to hold what I need. Plus, you push the button and the circle advances to the next compartment.

You can snag this on Amazon or at Walgreens.



I love reading. While I haven’t read all of these books, they’re all sitting on my bookshelf waiting for when I have more time.

  • Invisible: How Young Women with Serious Health Issues Navigate Work, Relationships, and the Pressure to Seem Just Fine | Amazon
  • Ask Me About My Uterus: A Quest to Make Doctors Believe in Women’s Pain | Amazon
  • Backbone: Living with Chronic Pain without Turning into One by Karen Duffy | Amazon
  • When Doctors Don’t Listen: How to Avoid Misdiagnoses and Unnecessary Tests by Leana Wen & Joshua Kosowsky review | Amazon
  • Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick by Maya Dusenbery | Amazon
  • Sick: A Memoir by Porochista Khakpor | Amazon
  • A Disability History of the United States by Kim E Nielsen | Amazon
  • The Ultimate Guide to Sex and Disability by Miriam Kaufman, Cory Silverberg, and Fran Odette | Amazon

Of course, gift cards and quality time are always appreciated, too.

Looking for more chronically helpful gifts? Check out this list I curated on Amazon!

Joint Guideline for Treating Psoriatic Arthritis Published by the NPF and ACR

The following is a press release from the ACR dated today.

The American College of Rheumatology (ACR) and National Psoriasis Foundation (NPF) have released a joint treatment guideline for psoriatic arthritis (PsA) that provides evidence-based pharmacologic and non-pharmacologic recommendations on caring for treatment-naïve patients with active PsA and patients who continue to have active PsA despite treatment. It also includes recommendations for vaccinations, psoriatic spondylitis, predominant enthesitis, and treatment in the presence of inflammatory bowel disease, diabetes, or serious infections.

PsA is a chronic inflammatory musculoskeletal disease most commonly found in patients with psoriasis, a skin disease that causes red, scaly patches to appear on the skin. According to the NPF, more than 8 million Americans suffer from psoriasis, and it is estimated that 30 percent of them may develop PsA.

Some key recommendations from the guideline include:

  • A conditional recommendation to use treat-to-target approach for all patients with active PsA;
  • A conditional recommendation to use tumor necrosis factor inhibitor (TNFi) biologics as a first-line therapy option in patients with active PsA; and
  • A strong recommendation for smoking avoidance/cessation.

“Treat-to-target is key, because it encompasses all clinical scenarios, rather than one particular clinical situation,” said Jasvinder Singh, MD, MPH, a rheumatologist at the University of Alabama at Birmingham who served as principal investigator for the guideline project. “The available evidence suggests the irreversible joint damage, associated functional limitations, joint deformities and disability associated with PsA could possibly be avoided/delayed with optimal disease management using a targeted approach. A targeted approach can also improve pain, function and quality of life and social participation.”

The use of TNFi biologics as a first-line therapy was one of many recommendations included to help providers and patients decide between the various pharmacologic options currently available. While current GRAPPA recommendations address the use of TNFi biologics in treatment-naïve patients, this is the first guideline that specifically recommends first trying them over oral small molecule (OSM) drugs.

“The available evidence suggested that in the absence of certain conditions, many treatment-naïve patients would benefit from trying a TNFi biologic first,” said Dafna Gladman, MD, a rheumatology professor of medicine at the University of Toronto and member of the NPF Medical Board who served as a content expert on the guideline’s core team. “This doesn’t hold true once other symptoms and comorbidities are present, so OSMs can continue to be a first-line option for patients that have contraindications to TNFi treatment, as well as patients without severe PsA or psoriasis that prefer oral therapy. Providers should take into consideration all active disease domains, comorbidities, and the patient’s functional status when choosing the optimal therapy for an individual at a given point in time.”

Tofacitinib was not included within the OSM category since its benefit/risk profile differs from that of the rest of the OSMs.

The strong recommendation for smoking cessation was based on evidence linking smoking to a reduced efficacy of biologics; the benefits of smoking cessation; and the well-established link of smoking with mortality, cancers and heart and lung diseases in the general population.

The PsA guideline was developed using the Grading of Recommendations Assessment, Development and Evaluation (GRADE) methodology, which provides rigorous standards for judging the quality of the literature available and assigns strengths to the recommendations that are largely based on the quality of the available evidence. Due to limited data in some areas, the quality of evidence was often graded low or very low. This led to nearly all recommendations being conditional. A voting panel of rheumatologists, dermatologists, health professionals, and patients achieved consensus on the direction and the strength of the recommendations.

“Despite an expansion in the number of new therapies for the treatment of PsA, only limited studies comparing effectiveness exist to inform treatment decisions,” said Singh. “This indicates a need for head-to-head trials of various treatments and comparative effectiveness studies in both trial populations and PsA populations with comorbidities. We also need studies in patients with active PsA who are treatment-naïve, or who have tried and failed different treatment approaches. The presence of high-quality evidence will allow formulation of strong treatment recommendations.”

The complete guideline is available online on both the ACR website and NPF website.

Posted in ACR

And Now, My Liver

A few things have happened since my last health update, so I figured a new update was due.


While I know my rheumy put in a referral for speech pathology to help with my esophageal dysmotility, I’ve not been contacted yet. I’m sure that my swallowing issues are towards the end of their priority list, and that’s fine.

In the meantime, I’ve been relying heavily on plastic straws. The other options just do not work for me. That’s especially true when my dishwasher keeps running into rust problems. I don’t trust it to clean any kind of straw, and I don’t have the hand dexterity lately to wash them by hand. It’s an important part of why plastic straws exist – and why they shouldn’t be banned.

People who can drink without straws should, but don’t ban them. You’re losing any potential business from a wide variety of people.


I’ve been keeping to my low FODMAP diet… for the most part.

Because of that, I’ve been able to recognize some other things that exacerbate my IBS. While I might not necessarily cut things like coffee completely out of my diet, I also know to expect – and prepare for – the end result. If I know I need coffee, I can premedicate with an anti-diarrheal, too, to help limit the intensity.

My follow-up is in October. I’ll likely go through with the gastroparesis study. Now that I’m not dealing with exacerbated IBS every single day, I am noticing how long it takes my body to process things… and it’s still too long.


My Holter monitor came back fine.

I’m floored, honestly. I have no idea how that was the case, but I also know a lot of heart issues can’t be found with that monitor. My rheumy has offered to pass me along to cardiology for a full workup.

I should take her up on it. I know I should. For some reason, though, I’m just pushing it off because, honestly, it scares the shit out of me.


Since changing from estrogen-filled birth control pills to an IUD, my migraines has drastically decreased.

Over the last 20 days, I’ve only had 3 migraine-related issues. Two of those were full-on migraines while the other one was medicating early to stop a migraine.


I’ve finally got a good medication routine down that stops most of the reactions I was having. Thanks to fellow MCAS patients, I’ve been able to figure out many of the things I react to. Sadly, that means limiting more dyes than I would’ve liked.

At the same time, can I live without wildberry skittles? Yes, yes I can.

Trigger Point Injections

I’ve been getting these for a while now.

I was terrified when I started, but they’ve really helped. As odd as it is to say, I’ve grown to appreciate needles in my head, neck, shoulders, and back.

I had a round of these last week and we did our fewest number of injections yet! It only took four shots to give me relief.

That’s incredibly amazing.

Because of that, we’ve been able to push off the next set from every four weeks to every six weeks… which means I get another round on Halloween!

*imagine spooky noises here*

And Now, My Liver

I stopped by the lab and got blood drawn after my injections last week. My CBC was great, but… my liver didn’t look good.

My AST was 42, when the normal range is up to 36. My ALT? 59, well above the 0-33 normal range.

While we’re not sure why this has happened, the Zyrtec I’m using to take care of my MCAS – up to 40 mg/day – can cause ‘abnormal hepatic function.’ So can my Nortriptyline, which was upped to 30 mg in June. I’m trying to only use 30 mg of Zyrtec for now and avoid using Zantac (another histamine blocker) when possible because, surprise, it can do that, too.

Rheumy has ordered another run of these labs in a month.

Time to shoot her a message about med use and a cardiology referral.

The Shipwreck and The Crumbling Temple

My body is an old ship, weathering a continuous storm. Smaller storms should feel like pebbles. Nevertheless, they pound me into rocks.

I come away with bruises from a poke,
a needle,
a bra.

Each time I feel the storm let up, to give me a break and collect my bearings, I’m made a hopeful liar.

It’s raining outside,

The storms hit me like hurricanes.

I feel beaten,

This body feels like a ship in the middle of wrecking, throwing people overboard as I toss and turn and writhe in pain.

I do not truly ‘sleep’ anymore, not as others do. I nap for an hour here, two hours there, until pain throws me back into the waking world unprepared for the horrors I wake up to.

In the daylight, I can at least see my terrain. I know where the rocks lie, and I can avoid them. The fog, once thick enough to cloud my lungs, returns as the sun sets over the horizon. My breathing, once calm and mindful, becomes a new beast. My deepest breaths begin to resemble that of a parent birthing an heir.

I’ll have no heir. No person should need to inherent my existence, to see my soul tormented so.

As the darkness grows deeper, I can no longer avoid the rocks. The sea, gently gliding me in the daytime, becomes a monster throwing me to and fro. I no longer know which side is starboard.

I cannot sleep in my quarters, next to my lover. As the cursed vampire Dracula stole Lucy away, I too am forced to a different space. These storms, not unlike Dracula himself, chase me through the night.

Sometimes, I awaken to notice my legs running from this thief,
this vampire,
this storm.

Despite it all, my hopeful heart believes that I will make it to the morning,
the next day,
the weekend.

I try to combat the storms. I tie down all that is holy to me, anchoring them upon my bow. Leading my way through the darkness with this love guiding me seems safe. Well, safer than leading with my actual eyes. Looks, as I have learned, are deceiving in the storms.

And yet, despite my efforts, all signs point to an ending to come. There will be a time, and I’m afraid it is in the not-too-distant future when that promise of daylight does nothing. Like a thief in the night, the reaper will come for my soul. There will be no fond farewells, no happy send-offs or kisses on the forehead – just me.

We will never learn the answer to the riddles within my depths. No keys in existence can unlock the chests full of medical treasure within my hull.

Those who say our bodies are temples to be worshiped and adored have not visited this ship. They do not writhe with me in the night or awaken to new bruises and symptoms of the wreck to come. No, like Molly Brown herself, they believe they are unsinkable.

My body is no temple – or, if it is, it’s one that sits, long forgotten, until pain comes to steal its few treasures. I stand proud, alone in the wild until the booby traps snap into action.

As the thief, the raider of my tomb runs for her safety, I begin to crumble,

In my place, I leave damage and destruction. It, too, will be forgotten. No tourists will visit my wreck and exclaim,
“O, woe is me!
I have not seen this broken land in its prime!
How did I never know such things of beauty and pain can coexist, side by side?”

No one will come to gaze upon my wreckage and wonder what else could have been done. Underwater machines will not visit my bones on the ocean floor, filming their journeys for posterities’ sake. No one will wonder what gold or charming grace is left in my depths.

No growth will come from my loss. People will not recognize the harm they’ve done by refusing my entry to calm and steady piers. They will say, “That ship was always heading for a wreck. It lasted quite a while longer than I thought it would.” Instead of mourning, people will remember only my storms that affected them.

After over a year of constant storms, amidst those caused by an ever-changing climate, the daylight stays a little longer. The fog begins to ease up and, for the first time in months, I can breathe.

For the first time in a long time, moorings appear. Instead of having to beg to be seen, someone tosses me a line.

My ship will, I know, wreck itself upon the rocks someday… but that someday is not today.

ACR Cautions Against a One-Size-Fits-All Payment Approach for Medicare

The following is a press release sent today from the American College of Rheumatology.

In comments submitted to the Centers for Medicare and Medicaid Services (CMS) regarding the 2019 Medicare Physician Fee Schedule proposed rule, the American College of Rheumatology (ACR) cautioned policymakers against implementing a proposal to reduce physician reimbursement for evaluation and management (E/M) services, arguing that doing so could severely compromise patient access to care and further exacerbate the growing rheumatology workforce shortage.

“While we applaud CMS for taking steps to reduce provider documentation and reporting burdens, we have serious concerns about the impact these cuts will have on patient access to rheumatology care,” said David Daikh, MD, PhD, President of the ACR. “A one-size-fits-all approach to reimbursement is not the way to move forward, and cuts of this magnitude will not only force physicians to spend less time with patients but could also dissuade medical students from pursuing careers in rheumatology and other specialties that treat a high volume of patients with complex needs.”

CMS’ proposal, which would create a flat payment for all E/M visits regardless of complexity, would result in significant payment cuts for treating patients with complex care needs – penalizing doctors who treat sicker patients or patients with multiple chronic conditions. These cuts also go against the recommendations of the Medicare Payment Advisory Commission (MedPAC), which earlier this year found that E/M services are undervalued relative to other physician services and recommended that reimbursements be increased rather than cut. The ACR recommends that CMS implement only the documentation relief elements of the E/M proposal, while delaying the payment changes so CMS can work closely with physicians and all stakeholders to identify alternative approaches that would ensure physicians are appropriately reimbursed according to the level of care required by each individual patient’s condition.

The ACR also expressed concern that CMS’ proposal to reduce reimbursements for procedures performed on the same day and billed as a separately identifiable E/M visit could reduce quality of care and lead to higher co-pays for patients by requiring them to return on a different day for minor procedures.

Additionally, the ACR urged CMS to:

  • Maintain the Merit-Based Incentive Payment System (MIPS) small practice bonus at 5 percent of the final score rather than move it to the quality performance category as is currently proposed.
  • Not move forward with a proposal to increase the weight of the cost performance category to 15 percent in the 2021 MIPS payment year. The ACR also urged CMS to use the best 90 days in the Cost category when calculating MIPS payment bonuses rather than the entire calendar year and exclude Part B medication costs from the cost performance category.
  • Provide physicians with more credit for participating in specialty clinical data registries under MIPS, such as the ACR RISE Registry which uses electronic health records to improve patient care, outcomes, and practice efficiency.
  • Rely on input from all stakeholders about inappropriate and excessive reduction in practice expense reimbursement for diagnostic ultrasound and other services.

“The ACR remains dedicated to ensuring that rheumatologists and rheumatology health professionals have the resources they need to provide patients with high quality care and will continue to advocate for payment reforms that reflect the way practices treat patients,” Dr. Daikh said. “We look forward to serving as a resource for CMS as it develops and implements its final 2019 Physician Fee Schedule rule.”

To view the comment letter, click here.

Posted in ACR