Hair (not the Musical)

Tags

, , ,

I was recently at a meeting that included a number of other RA patient advocates. Over lunch, conversation turned (not unexpectedly) to various treatments and side effects. One of the others, who had long, luxurious dark hair, said, “It’s not fair. I was losing hair by the handfuls from my head but I still had to shave my legs.”

She was talking about her experience with methotrexate (MTX) which is the first medication prescribed for many RA patients. Being young, pretty, and single, hair loss was a non-starter for her and she quickly talked to her doctor about switching treatment plans.

To read the rest of this article including my own “hair-raising” experiences with RA treatments, visit rheumatoidarthritis.net here: https://rheumatoidarthritis.net/living/hair-not-musical/

Advertisements

Man Plans, God Laughs

Even though I’m taking some time away, I couldn’t help but provide a mid-year update. It is, after all, July 1 and we’re now in the downhill slide into all the end-of-year frivolity. (It’s only 177 days until Christmas!)

I started the year with some (non) resolutions and I’m pleased to say that I’ve kept many of them. However, I’m also here to report that I have various new body parts, lots of airline miles and 15 extra pounds that I didn’t start the year with.

New Body Parts

As reported earlier, I had a reverse shoulder replacement in mid-February. I’m just over four months out and the shoulder is doing terrific — much better than my other shoulder which I had replaced about nine years ago. Seriously, it’s wonderful. Total recovery is a long process, but I have an amazing amount of strength and range of motion already.

I also had cataract surgery in both eyes. The second one was about two weeks ago and the first one was four weeks before that. Like my shoulder surgery, these new “eyes” have improved my life immensely. Surgery was easy, recovery has been good and my sight is fantastic. My only regret is that they didn’t have any options for X-ray vision eyes when I had them done. 🙂

I am hopefully done with surgery for 2018!

Airline Miles

In the midst of all that surgery, it seems like I’ve been traveling quite a lot the first half of the year. I went to Austin, Texas; Philadelphia (twice); Washington, D.C., Wichita, Kansas; Chicago; Nashville and Las Vegas. Most of these trips were related to my advocacy and were both enjoyable and productive. The trip to Wichita was to attend the memorial for my younger cousin who died of brain cancer and which still grieves me.

Travel is in store the second half of the year as well. While I’m sure there is more travel looming in my future, at the moment I have firm reservations for London and Norwich, UK; Munich, Nuremberg, and Berlin, Germany; Amsterdam, The Netherlands; Tucson and Phoenix, Arizona; and Las Vegas (again).

Weight Gain

It’s really been a perfect storm. During all the surgery recovery, not only was I not exercising, my husband was responsible for a lot of meals which consisted mainly of take out. In addition, my cataract surgery recovery included eye drops that had prednisolone in them (!) so I was on steroids for eight weeks (four weeks for each eye). And, of course, traveling seems to put the pounds on everyone. Fifteen friggin’ pounds. Sheesh! And I worked so hard to take it off. Back to the alternate day fasting and exercise!

So that’s how my year has gone so far. I’m proud to say that I’ve done pretty well with my resolutions to find a better balance in my life, to try to consciously be kind to people (which is tough sometimes when you’re on steroids …), and to keep positive influences in my life. Sustaining the weight loss has been a challenge, but the year isn’t over yet.

I hope the first half of the year has been kind to you and that the rest of the year delivers on the promise of health and happiness to you and yours. Thanks for checking in.

 

 

Pain and Sleep – a Two-Way Street

Tags

, ,

Below is a screen shot from my phone. It shows the sleep tracking from my Fitbit. The red parts are when I was awake. It’s pretty easy to tell from this picture when I got up, took two (more) Tylenol®, and finally got some decent sleep.

We’ve all been there. All those little aches and pains that we don’t notice (or simply ignore) during the day when we’re busy seem to magnify themselves in the dark quiet of the night. That slightly sore ankle, knee, hip or shoulder suddenly takes over your whole attention and will not let you get comfortable and go to sleep.

What I didn’t realize is that it’s a two-way street. According to the research, sleep complaints are present in up to 88 percent of chronic pain disorders and at least 50 percent of individuals with insomnia—the most commonly diagnosed disorder of sleep impairment—suffer from chronic pain.

Read the rest of this article here: https://rheumatoidarthritis.net/living/pain-and-sleep/

Acceptance May Mean Saying “No”

Tags

It was a dream job. One of those once-in-a-lifetime opportunities to do meaningful work you enjoy with people you respect at a generous salary. Those jobs are rare to begin with but when you’re, like me, at the end of your career, they are all but nonexistent.

I truly tried to figure out how to do it. I had even convinced myself that I could do it even if it occasionally meant the 70 to 80 hour week, frequent travel and high levels of stress. I liked the person who would be my boss. I appreciated the talent and dedication of my fellow co-workers. I could make a difference. It would pay incredibly well. I really, really wanted that job.

Read how I addressed this issue with a “maybe” at rheumatoidarthritis.net.

Take 10

It’s hard to believe that it’s been nearly 10 years since I was diagnosed with RA and started this blog. Wow.

This blog has introduced me to some amazing people, opened doors to participate in ways I could not have imagined, and made my life more fulfilling than I could have asked.

The landscape has changed a lot since I started Carla’s Corner. When I was diagnosed, I had a hard time finding patient stories. Now, thanks in large part to social media, there are bloggers and podcasters and Instagrammers and all kinds of patients making their voices heard in ways that didn’t even exist 10 years ago. These incredible people demonstrate first-hand that you can not only survive, but thrive with this disease.

So, after a decade of doing this, I think it’s time I took some time to think about where this blog and I, as an advocate, are going to go. I’m going to take off a few weeks — 10 to be exact — between now and the end of August. It’s a great time. I’ve got a lot of traveling to do the next couple of months (including a terrific trip that includes having Sticky Toffee Pudding with my UK chum and fellow blogger, Pollyanna Penguin). I have a few articles in the queue with RheumatoidArthritis.net that will no doubt filter through during this time and if major things happen, I might climb on my soapbox yet again. But I didn’t want you to worry about my going quiet.

We all need time to take a deep breath, count to 10, and look back before we look forward again.

While I’m away, I hope your life is good (and that you miss me). Thanks for checking in for the last 10 years. See you in August.

 

 

C is for Cataracts

Tags

Interestingly, I first wrote about being told I was developing cataracts in December 2011 — about 6.5 years ago. I’d already started having issues seeing/driving at night, but other than that had no other issues that I could tell.

Fast forward until now.

My right eye has always been my “dominate” eye, but at the first of the year I noticed that the vision was considerably more blurry. If I wanted to see something clearly, I would close that eye. My annual checkup with my retina doctor confirmed that it was finally time to address the issue.

Continue reading

These Proposed Changes to Insurance and Medicare May Cost You Plenty

Tags

, , ,

There are two recent proposed changes to insurance and Medicare that can have a major impact to your wallet and potentially make insurance unaffordable for millions.

People with Pre-Existing Conditions Could Be Denied Coverage or Charged Exorbitant Amounts

There was a critical time in my life when I was self-employed and needed to get a private insurance policy from the marketplace. I was incredibly thankful that “Obama-Care” had recently been enacted and that people with pre-existing conditions (1) could not be denied insurance coverage and (2) were not required to pay higher premiums than healthier people. As it was, I was paying more than $1000/month for insurance coverage just for myself.

My home state of Texas, along with 19 other states, has sued to have these provisions revoked. The political intricacies are better explained in this Medpage Today article. According to the article this could impact 52 million people. A joint statement from five leading health organizations included the following statement: “Should this case be successful, people with cancer, heart disease, diabetes and any serious or chronic condition are likely to be denied coverage due to their pre-existing conditions or charged such high premiums because of their health status that they will be unable to afford any coverage that may be offered … Without access to comprehensive coverage patients will be forced to delay, skip or forego care. This was often the case before the law took effect and would likely be the same should these essential protections be eliminated.”

The US Department of Justice (DOJ)  has declined to defend these provisions (meaning the DOJ didn’t object to them) so the lawsuit is continuing on. However, if this carries through, those of with RA, will certainly be included in the “pre-existing conditions” list. In the not-to-distant future we, and others who need insurance coverage the worst, may be denied access to it.

Infused Medications May Come Under Drug Plans Rather than Medical Plans

In an earlier post I described that how you receive your RA treatments affects how much you pay. Medications that are administered at home (pills, injections, lotions, etc.) normally come under the pharmacy insurance plan. Covered medications are generally assigned a “tier” with approved generics being the lowest cost and costlier medications (such as biologics used to treat RA) are the highest tier and, if covered at all, usually requires the patient to pay a significant portion of the cost.

On the other hand, medications used in treatments done at a facility such as a doctor’s office, infusion center, or hospital, are covered by the medical part of the insurance. this would include, for example, RA medications given at an infusion center. In this scenario, a patient will have a co-pay which may be considerably less expensive than they would pay for a medication under the pharmacy plan.

This breakout generally applies to both Medicare and private insurance.

To provide a personal example, I am covered by Medicare and have an infused biologic that is currently covered by the medical coverage. It costs me $0 out of pocket for my infusions. The medication I take also comes in an injectable form. If I used the injection instead of the infusion, it would cost me $6,283 each month.

The current drug plan proposed by President Trump would move drugs used in treatment settings from the medical coverage to the pharmacy coverage for Medicare patients. If this were to happen, I could no longer afford treatment. (To add insult to injury, patients like me who are on government-sponsored plans such as Medicare or Tricare, are not eligible for patients assistance programs.)

Right now this proposed change is limited to Medicare patients, but the plan is being promoted by Pharmacy Benefit Managers who also manage drug plans for commercial/group/private insurance companies. It’s not much of a stretch to think that if they can make this change for Medicare, then other plans aren’t far behind.

Not only are those of us with drug plans at risk, there is an estimated 9 million people on Medicare who do not pay the extra premium for drug coverage. There has been no proposal so far as to how these people would pay for their medications.

I used to think that the uncertainty surrounding the current administration’s drug policies was unnerving. As these plans become unveiled, I think the reality is much, much worse than the uncertainty ever was.

Thanks for checking in. I wish I had better news to share.

 

Acceptance is not Submission

It’s been said that RA patients, along with others receiving a chronic illness diagnosis, often go through the five stages of grief. These stages were first described by psychiatrist Elisabeth Kübler-Ross in 1969 and include denial/isolation, anger, bargaining, depression and, finally, acceptance. While these stages of grief were originally meant to apply to death or dying they’ve certainly been applied to other serious situations, including long-term illness.

I follow a number of blogs, forums, and support sites where patients have loudly (in all caps) proclaimed, “I WILL NOT ACCEPT THIS DISEASE!” I politely beg to differ because I believe that acceptance is the very foundation of living your fullest with RA.

To read the rest of the article and understand why I feel so strongly, see the full post at http://www.rheumatoidarthritis.net, here: https://rheumatoidarthritis.net/living/acceptance-is-not-submission/

Hugs from Healthline

Tags

,

I am in august company as Healthline has selected “Carla’s Corner” as one of their 2018 Best Blogs for Rheumatoid Arthritis. Some of my favorite sites (which include some written by my favorite people) also made the list. Please check them out at:

https://www.healthline.com/health/rheumatoid-arthritis/best-rheumatoid-arthritis-blogs

Thanks not only for checking in for all the great support that you’ve provide to me over the years.

(Hugs from me, too.)

 

Pain(tings) Worth Thousands of Words

Tags

, , ,

This is a sponsored post. Salix Pharmaceuticals compensated me for this post. All opinions are my own. Certain product information has been included to meet regulations.

Having been a communicator for most of my career, I understand the importance of words. Having been diagnosed with RA for almost a decade, I know that the words we use with our doctors are crucial.

Doctors are used to hearing about pain in a clinical setting. However, Salix Pharmaceuticals took that discussion out of the medical facility and put a very personal and graphic twist on the conversation. Salix brought chronic pain patient influencers and health care providers (HCPs) together at a recent forum to discuss opioid induced constipation (OIC) and specifically the features, benefits and risks of Salix’s OIC treatment for appropriate patients.

 A linchpin of the discussion was the results of Salix’s survey done in partnership with the U.S. Pain Foundation (discussed further below). The patient influencers were asked to interpret the personal meaning of these statistics into artwork. The fact that these images were then shared with HCPs is, to me, incredibly powerful. This was a new way to see the issue; not a typical discussion with a patient. The artwork pieces were tangible interpretations of OIC statistics created by people who live with chronic pain. I believe this kind of interaction helps break down the communication barriers between HCPs and patients and can bring a much better understanding about OIC and its effects.

Patient influencers transformed statistics into meaningful artwork that was shared with healthcare providers.

While I’ve researched both pain statistics and the opioid “crisis” situation, I’ve only paid slight attention to OIC. I’ve had the occasional (really awful) experiences with OIC while on opioids and that’s convinced me to avoid the subject as much as possible. I do know that OIC is a significant issue for many people, complicating the lives of patients already living with chronic pain. I was therefore surprised to read some of the information revealed by the survey.

Continue reading