I just learned that the FDA’s Science Board will be meeting today to discuss a wide range of opioid drug topics (8 to 5 Eastern). The meeting is webcast. While most of us don’t have the time or patience to attend the full meeting (which has already started by the time I got this posted), the link below also provides access to the background materials being provided to the meeting. This meeting has the potential to greatly influence current and future FDA actions concerning opioid drug and pain medication research, production, and prescribing guidelines. For those of you interested, I encourage you to acquaint yourself with this meeting and access the materials provided: http://www.fda.gov/AdvisoryCommittees/Calendar/ucm487034.htm
Okay, so I’m late in bringing this to your attention, but wanted to be sure you didn’t miss Healthline’s article on tips to living well with RA found here: http://www.healthline.com/health/ra-stories#2.
One of the contributors is Amanda John, the author of the blog, All Flared Up (http://allflaredup.wordpress.com) and a new friend I’ve made through Creaky Joints. I love Amanda’s great sense of humor and wonderful southern charm. Just being around her makes lots of things better, so be sure and check out her tips along with the others included in the article.
Hope you have a great day! Thanks for checking in.
Well the other shoe dropped today on my “(Mis) Adventures in Mammography“. I had the follow-up appointment to do the aspiration procedure, possibly followed by a biopsy.
Things didn’t go quite as smoothly this time when I got there as last week. They hadn’t preregistered me or cleared my insurance, so we had to muck about with that for a few minutes. But that was basically all the bad news to be had.
I had the same great, funny, engaging doctor who read my initial sonogram last time, so I was relieved to be working with someone I sort of knew. Other than a bit of stinging, initially when he injected the lidocaine to numb the area, and then a bit more when he started drawing out the fluid, the procedure wasn’t uncomfortable at all.
The doctor was able to completely aspirate the cyst, meaning that it was a “complicated” simple cyst and not a “complex”, potentially malignant situation. As such, we didn’t have to do a biopsy or any other follow up (except perhaps be a bit more diligent about self-exams than I have been). It turned out that I was facing the monitor and could watch the needle go in and the cyst shrink as the fluid was drawn out. It was really pretty cool.
A bandaid later, I was able to dress, leave and have my husband buy me lunch.
In other news, I have my initial meeting with the disability lawyer in a couple of days. I hope this streak of good news continues.
I hope your day is filled with good news as well. Thanks for checking in.
I told you that I’d have good news soon and that day is today.
I’ve been offered (and accepted) the both pleasure and privilege of writing a series of three articles for the great folks over at Mango Health. A primary focus of theirs is the Mango Health app (www.mangohealth.com) that really helps build healthy habits as well as help you mind your medications. In addition, they have a super blog filled with helpful articles, useful information, and wonderful stories by other people with chronic conditions.
My first article, 5 Helpful Hints for the Chronic Traveler, appears here: http://blog.mangohealth.com/post/139795648256/5-helpful-hints-for-the-chronic-traveler.
I hope you enjoy it as well as all the other thought provocative content on the site.
Thought I’d update you with other adventures that haven’t (yet) turned out well, one of the most important being my disability claim that has been denied. I’m not surprised but this means that I am now going to have to take hours, days, weeks and maybe months to go through the appeal process — all the while without an income.
I told my PCP about the situation and they assured me they would write whatever medical or legalese that needed to be submitted to help support this effort.
My rheumatologist, who actually called the company to find out what they heck they needed to get the claim approved was incensed. When she spoke to the analyst, he explained the form he needed and told her that when they received that, “…she’d be good.” My rheumatologist took this to mean that once they received the form from her, my claim would be approved. My rheumatologist (and her very patient staff) have all pledged their support in getting this claim pushed through.
So I have requested a copy of my entire claim file — not only the medical records and physicians’ statements, but all the insurance company’s analysis and other notes. And I have an appointment with a disability lawyer next week.
I knew this would be trying, but with everything else going on in my life, summoning the energy to go to battle wears me out just thinking about it. But there is such a major difference in income (vs. Social Security disability) that I can’t not move forward.
Sorry to keep whining. I know that all this will work out and I’ll have some good news to report, just not quite at the moment.😦
Thanks for checking in.
Okay: Here’s the full disclosure. This is not about rheumatoid arthritis. It contains way TMI about a personal subject. This is me whining. This is your chance to tune out now ….
If you’ve been paying attention (always a dangerous assumption), you’ve no doubt guessed that I went in for my annual mammogram this morning. My usual routine is breeze in, breeze out, get the “no-problem” results in the mail in about a week.
Got there. Got checked in. Got changed into the cute little pink gown. Settled in with the six-month-old magazines. Slightly past the appointment time, a nice technician called me back and we went through all the standard questions. As we got ready to get down to business, I opened my mouth. (When am I going to learn to stop doing that?)
I have a history of fibrocystic disease. It’s a fairly common, benign condition and mine seems to come and go depending on how much caffeine I’ve had in my life. Since my caffeine consumption had crept up (I now have time to enjoy a cup of coffee in the morning), I wasn’t surprised to find a swath of ropy feeling tissue on the left side where I’ve had fibrocystic lumps in the past. I had found it in the interval between the day I had made the appointment and the actual appointment time. I mentioned this development and my fibrocystic history to the technician, pointing to the area and told her we just needed to be sure we got that area well covered in the images.
Her eyes went wide. Her hands flew to her cheeks. She starts shaking her head. (I’m not kidding.) What I thought was a total overreaction.
She says to me, “I’m sorry, but we can’t do your screening mammogram. At the moment you tell me you have found something suspicious, we have to go to a diagnostic exam and we have to have an order from your doctor.”
I protest. Can’t we just do the screening exam and see what shows up and then if it’s warranted, go to the next steps?
So I’ve already been there about 45 minutes and I’ve got a lunch date, and I am so completely not worried about this situation, that I push a little harder. She presses on (my tender) breast and says she can feel the lump. Fine. So then I asked if we could call the doctor’s office and see if they would send over an order while I was still there and not have to come back another time. (Did I mention that I have wonderful doctors?)
And that’s what happened.
I’m not going to describe the process. If you’re a woman, you already know and if you’re a guy, you really don’t want to know. Let’s just say that they added an extra, really ouchie part at the end.
Afterward she left me in the exam room to go talk to the radiologist. She said if he saw anything, they would need to do a sonogram. A (very short) few minutes later, she’s back asking me to go with her. As we’re walking, she tells me that she’s taking me to see Vicky who will do my sonogram.
So I tell Vicky “yadda-yadda fibrocystic disease … yadda-yadda no big deal … etc.” She agrees it’s probably nothing based on my history and we both politely agree better safe than sorry. Then she starts working her sonogram magic and pointing to the screen showing me what she’s seeing in the area in question. You know those satellite pictures they show of hurricanes where’s all this swirly stuff with a big dark hole in the middle? That’s what it looked like. The big dark hole is what she’s seeing that she says looks “a bit unusual”.
So she captures a series of images and then says to me, “I’m going to go speak to the radiologist and see what he says. Just so you know, he’s very conservative and he may want to do a needle aspiration on this just to be on the safe side. I’m not saying he will, but just so you know that he might.”
I’ve been around enough medical techs who know what they’re doing that when they warn you that something MIGHT happen, you can bet money and take it to the bank. And this lady had been doing breast sonography for almost 20 years.
So sure enough she comes back in trailing the radiologist with her. Love the radiologist. He is reassuring. He is funny. He discusses what he’s seeing. Apparently “simple cysts” are fluid-filled and look solid black and are no issue. Mine, not so much. It has a cloudy center. (I accuse my breast of not trying hard enough …) He wants to do an aspiration — which is where they draw fluid out with a needle to see if they can reduce the cyst in size. If they can’t, they will do a needle biopsy to check for cancerous cells.
I get dressed, meet with the scheduling nurse and schedule the aspiration for a week from today. I have to be off some of my meds for at least five days before they can do it. It’s not a big deal. No prep. I can have breakfast. I can drive myself to and from the procedure. I do have to be careful lifting things for a few days afterward, so my husband has to do the laundry next weekend. It’s almost worth it just for that.
The problem I have at the moment is that I simply CANNOT remember whether he said what he suspects I have is probably a “complicated cyst” or a “complex cyst”. I didn’t know enough to pay that much attention. But when I got home and start asking Dr. Internet, I find that complicated cysts aren’t that big of a deal whereas complex cysts have a much, much higher malignancy rate. I’m almost 100% certain he said “complicated” but now I have that nagging doubt in the back of my mind.
So that’s my (mis)adventures for today. I’m still pretty convinced that it’s nothing and I have no problem with being safe (rather than sorry). It just wasn’t how I expected my day to turn out.
I hope that however your day turns out, it’s neither complicated or complex. Thanks for checking in and listening to me whine.
Those of you who follow my blog know that I’m a supporter of Creaky Joints and the associated Joint Decisions and Arthritis Power initiatives. I have (belatedly) run across a news release from them entitled, “New Study Confirms Arthritis Patients’ Ability to be More Integral Contributors to Clinical Practice Guideline Development.” I’m not going to recite the findings of the study here, but the release (and the study) is certainly worth a read. Importantly, the study stated “that patients developed nearly the same recommendations as physician-dominated panels for questions where there was evidence warranting moderate to high confidence.” Normally treatment recommendation guidelines are determined by panels that, if not completely comprised of physicians, only have one or two patient advocates. This study clearly demonstrates that patients are well suited to participate in developing treatment guidelines.
For (some or maybe many) physicians, this concept is unsettling. I suppose it’s like a driver telling a highly trained auto technician how to diagnose and fix a catalytic converter. But while the technician is the expert in repairing cars, the driver is actually the expert in knowing how the car performs.
The same is true in the doctor-patient relationship. The doctor is certainly the expert in the clinical aspects of a treatment. However, the patient is the expert in knowing how they feel as well as which treatments are palatable enough that they will actually comply with them. Only the patient knows, for example, if they’re suffering enough to undertake the additional risks of moving from a DMARD to a biologic in order to find relief.
Having this voice, in my opinion, is critical in defining treatment guidelines that affect, not the doctor, but the patient.
And while some patients prefer to simply follow their doctor’s advice (and there is nothing wrong with this), I prefer being an active participant in my health care.
I hate having RA. But I love living in a time where patients voices are not only heard, they’re starting to be sought. There are many ways to participate. If you want a place to start, click on the Creaky Joints, Joint Decisions, and Arthritis Power links above.
Thanks for checking in.
This blog was just honored by ChronicPainDisorders.com by being named a best Arthritis Blog for 2016. Again, I am in awesome company with other blogs that I also consider some of the best of the best. (I am WAY flattered but I’m starting to wonder if I shouldn’t just quit while I’m ahead and take all this attention and run …. Just kidding.)
Please check out the site and join me in congratulating all the other wonderful bloggers who were also on the list. Click on the link below the “badge” to check it out.
So if you don’t want to read a long, whiney post, just keep on scrolling. I posted something earlier today that’s a whole lot more uplifting.
I officially left the workforce in November. From an insurance standpoint, this means that I was covered by employer’s policy through the end of the November. In December, I was able to continue that coverage under COBRA which simply meant that I paid 100% of the premium instead of the company paying a portion. As I had met 100% of deductibles, out-of-pocket, etc. and everything (including prescriptions) was being paid, it was a good deal. It took some diligence to make sure everything was in place and that coverage didn’t lapse. The Thanksgiving holiday slowed some progress, but everything worked out.
Now last year, through December, medical coverage was through Insurance Company A. My ex-employer switched insurance providers starting January 1 to Insurance Company B. In order for me to continue coverage, I had to pay my December premium to Company A. Once I paid for December, my information was to be transferred to Company B for coverage under the new policy starting in January. I then had to pay my January premium by a certain point in December. With some hand wringing and tooth gnashing on my part, all of that happened but we got down to December 28 and I had no confirmation (even though I paid the premium) that I actually had health insurance coverage starting January 1. This was important because the first two weeks of January, I have scheduled two sets of labs, one X-Ray, three doctors’ appointments, my Actemra infusion, three prescription refills, and four physical therapy sessions — all of which had to be verified with the new Insurance Company B. But finally on December 28 I was able to print out a temporary insurance card and start providing the pertinent numbers to those various people who needed it.
So I’m feeling pretty good. I start January with a sense of accomplishment that even though I had been treading some pretty treacherous waters, I had successfully transitioned from group coverage to COBRA and then to a new insurance provider.
I guess being smug is the same thing as pride because I was feeling smug and there was definitely a fall in my future.
I was on Insurance Company B’s website checking to make sure that my dentist (with whom I have an upcoming appointment) was in network. But the weird thing was that I didn’t see any dental insurance coverage listed.
I contacted my old HR department. We went around the mulberry bush a few times (metaphorically speaking) before we figured out what happened. In addition to the health insurance election I made back in December, I was to have also made elections (if I wanted) for continuation of dental and vision insurance. But guess what? Those were never transmitted to me, so I had no opportunity to make the elections. So my dental and vision coverages had actually lapsed in December and therefore had not been transferred to the new provider to begin coverage in January. I didn’t know they weren’t bundled altogether, so I didn’t raise a flag at the time. I selected the only thing that was made available, which looked like this (whatever those codes mean):
The “fix” was to go back to Insurance Company A, turn on those elections and pay the December premiums. Theoretically this would then automatically flow through to Insurance Company B where I could then pay the January premiums and once again have my eyes and teeth covered. Oh, and it’s now the first week of January and I only have until January 14 to make all this happen or I lose eligibility. Previously, it took more than two weeks for each step of the process for medical coverage.
So I immediately thought to myself, “Self: It’s still open enrollment. You can just find an individual dental policy and sign up for it and skip all that trauma.” So while I had my old HR department chasing down how to “turn on” the original elections that should have been available to me two months ago, I start on a multiple-hour investigative journey into the land of dental policies to see if I can find a reasonable replacement on my own.
I’m sitting there after a few hours, my desk littered with printouts of policies, trying to sort out which are affordable, which have my dentist in-network, which are insurance companies I’ve actually heard of, and my phone rings.
It’s my physical therapy provider. They can’t verify health insurance benefits for my PT appointment the following morning. It appears that Insurance Company B has my birthdate wrong. Since my provider has the correct birthdate, it doesn’t match what the insurance company (incorrectly) has and they won’t verify that I’m covered.
So this is the first Monday of the new year, right? Insurance companies are getting slammed by people with questions. Insurance Company B’s website has crashed. It won’t even load. (They eventually put up an error message.) I call the customer service number. I am on hold for 46 minutes until I finally get a representative. (Thank you, Sprint for unlimited minutes …) She immediately asks me to verify my birthdate. You can only imagine how that conversation goes.
It doesn’t get much better after that, compounded by the fact that English is obviously not her first language. But she tries to be helpful and eventually, after about 17 security questions, decides she’s actually speaking to me and tries to fix my birthdate. She can’t do it. It’s one of those protected fields that only authorized users can change and she obviously isn’t authorized enough. She says she’s sent the request to “operations” but it may take three to five days for it to be corrected. I explain that’s not good enough and ask if there is a supervisor or someone else who might be able to help. She puts me on hold. Comes back. Puts me on hold again. She finally comes back and tells me that no one is answering — she is rolling directly to voicemail. So after more than an hour, I’m not really any closer to getting the situation fixed than when I started. She did, however, tell me the issue with my birthdate. The last four digits of my Social Security number (which actually form a valid date) got input as my birth year. (I am momentarily elated as this makes me much, much younger than I actually am …) She also told me that my old company should be able to correct this issue on their administrator screens.
So I go back to my old company’s HR department (who is still trying to work on my dental and vision elections) and explain the new problem. No, they can’t fix it on their screens. But they did send in an urgent request to their Insurance Company representative.
Deflated, but not yet defeated, I return to my quest for dental coverage. It turns out the best policy I can find will cost about 20% more than what coverage would be through my old employer. That’s actually not a lot of money as dental premiums are not that expensive for one person. The problem is, that since my dental coverage actually lapsed (through no fault of my own), I was looking at a six- to 12-month waiting period for any kind of dental procedure other than a simple clean and check. I have not one, but two crowns that need to be replaced, so that issue made my finding my own, separate dental policy a really bad idea.
The next morning there is an email for me from the company HR department. They say the birthdate issue on the health insurance is now corrected. Sure enough, when I arrive at the PT appointment, they are able to verify coverage and my pharmacy has also been able to process my prescription refills.
I call Insurance Company A and ask them what the December premiums will be for dental and vision insurance. Even though neither the elections nor the premiums are showing up yet on the website, I make a payment online. As soon as the premium notice shows up, I need to have the payment waiting for it. Because it still has to be processed then transmitted to Insurance Company B in order for me to pay the January premium.
So things aren’t perfect (yet). But the truly large issue of health insurance has, at least, been addressed for the moment. I have people helping me work the issue of the dental and the vision coverage. True these are, no doubt, the same people who caused the screw up in the first place, but who better motivated to correct the situation?
It’s now the third work day of the new year. I hope this week is not a harbinger of the rest of the year. But I do hope your 2016 is not only starting well but will be filled with both health and happiness.
Thanks for checking in.
Sally Fields is credited (and misquoted) with the phrase, “You like me. You really like me.” (What she really said was, “You like me, right now, you like me.”) Misquote aside, I know how she felt when I heard that once again, Healthline has nominated this blog as one of the best RA blogs for 2015. (This has happened each year starting in 2012.)
And although I’m also fond of quoting Groucho Marx who said, “I wouldn’t want to belong to any club that would have me as a member,” I’m thrilled once again to be part of the chosen few along with many of my favorite other RA bloggers.
This is actually a contest. If you click the link on the graphic, it will take you to the Healthline site. Rather than wasting time and energy voting for me, I would rather you explore some of the many marvelous voices out there in the community of chronic disease. I do every year and have always found both joy and inspiration.
Thank you, Healthline, for the nomination. And thanks to each of you who visit my blog and find something of value here.