Tuesday, November 24, 2015

Moving Past Guilt to Gratitude

Guilt can be insidious. It serves to keep us down and tends to worsen our impression of its root cause (no matter what that cause, external or internal). I’ll boldly say that much of the time we make ourselves feel guilty even when our loved ones are supportive and wish the best for us.

But what if the guilt is coming not from the several things you can’t do, but from the things you CAN do?

Sounds silly, doesn’t it? Feeling guilty for being ABLE to do things or feeling self-conscious about sharing positive news or about enjoying a bit of that elusive thing called remission.

Not long ago I was at a meeting with other people living with RA during which we were asked as a group about remission. What does remission mean to us? Who had achieved remission?

I have a confession. I was hesitant to say too much because unlike some of the other RA folks in the room, I agreed with my doctor when she determined I was currently in remission. During a recent appointment, I reported no pain or swelling during the past couple of months. (Never mind, I honestly forgot about the minor flare-up I experienced earlier in the summer while we were talking).

I had no tender or swollen joints when she examined me. My inflammatory markers remain low.

I’m doing great!!!

I feel guilty saying so because I know that so many people are not doing well. There is so much pain and angst within our online RA community that sometimes it feels unfair to talk about the good things. But I was encouraged to do just that.

Read this post in its entirety:
From RA Guilt to Gratitude

Friday, November 13, 2015

Being In Limbo Can Be Frightening, No Matter The Diagnosis

I’ve recently been reminded what it feels like to not know exactly what’s going on. To be told, “We found something and want to do more testing. You are scheduled for a procedure next week...that’s a lot like going to the dentist.” To sit in a consultation room shortly after the doctor leaves, pull out your iPhone and google the words she used, and begin to process what you’ve just been told.

Reality check

Last week I went in for my annual mammogram following which I received the standard all-clear in the form of a check-box report. No abnormalities detected. But since my breasts are very dense and I’ve developed lumpy bumpy cysts in recent years, my nurse practitioner had also ordered ABUS (automated breast ultrasound) which is a newer technology that can detect abnormalities in dense breasts that are not seen on mammogram. Ironically, my breasts were too large for the machine to be effective so the traditional hand-held, manual testing was done instead.

Besides the cluster of cysts in the right breast, the ultrasound unexpectedly found two solid masses in my left breast which is what prompted the brief meeting with a radiologist to schedule a core needle breast biopsy in a week. The biopsy took place on Tuesday afternoon and I was told that the report from the pathology lab should be back in 3-4 business days, probably by Friday. Not too long of a wait.

Read this post in its entirety:
Being in Limbo Can Be Frightening

Wednesday, November 11, 2015

Searching For a New RA Doctor

When my doctor and I have fewer RA-related topics to discuss, she moves onto other topics such as losing weight, exercising more, etc. I took her advice to heart last year and have lost 55 pounds so far by altering the way I eat, riding the exercise bike at home, weighing each day, and keeping detailed records of everything.

Our discussion at this appointment took a different turn. I learned that she is retiring.

RETIRING!! Wait, what, OH NO! She can’t retire. I’ve followed this doctor through three changes in practice. She is great about communicating with my other doctors and with me, having called me after hours on several occasions. She has been my only rheumatologist and she is my golden key to getting the care that I need. She’s awesome.

After I literally blurted out “oh no”, I quickly offered congratulations. It appears that I was supposed to get a letter from the office informing me, but apparently I did not. I am going to need a new rheumatologist, soon. In beginning my search here are some of my initial thoughts and inquiries.

1. Who are the local rheumatologists? My rheumy gave me a list which is very helpful.

2. Who participates in my insurance preferred provider network? Check insurance website.

3. Who has privileges at the local hospital infusion clinic where I’ve been receiving my Rituxan infusions for the past 5+ years? Insurance website provides this information for most doctors.

Then I called the infusion clinic to ask:

4. Who are the doctors in the area who send their RA patients to the clinic for Rituxan infusions? I presume that these doctors are Rituxan-knowledgable, Rituxan-comfortable, and less likely to argue when I ‘tell them’ what my preferred treatment plan continues to be during our initial get-to-know-you appointment.

But in calling the clinic, I learned another consideration:

5. Which doctors in the area continue to have hospital privileges because they chose to go through the extra training required to use the hospital’s updated electronic system?

6. When are the first available appointments for the 3 doctors who match the above criteria?

7. So, who are the doctors who can help me get my Rituxan infusions as close to on-schedule as possible since my doctor is retiring so soon?

I was mildly surprised that nothing about quality, skill, or like-ability had entered my thought process. Nothing about being able to work with my other doctors. Nothing about being familiar with my comorbidities. Nothing about establishing a good patient-doctor relationship.

The main consideration at this time is who can help me to continue to get my treatments in the same way I have for years at a clinic that has excellent facilities and where the nurses know me and are skilled to handle my challenging veins….and who is covered by my insurance policy.

Read this post in its entirety:
Who Can Help Me Get My Next RA Fix?

Monday, November 9, 2015

Walking To Get Healthy

I’ve been writing about multiple sclerosis and chronic health topics every week for over 8 years. There is very little chance that I’m in denial regarding the state of my health or disability. Only rarely have I overestimated my ability to do something.

I’m fortunate to be a person living with MS who responds well to treatment and has even experienced an unexpected improvement of physical function after changing disease-modifying therapy 6 years ago.

Last year when my doctor recommended that I strive to walk 10,000 steps every day, I was dubious. But I was also not sure how many steps I might be getting on a routine basis because I wasn’t measuring them. When I got a Fitbit, I was excited to be able to see just how much I was moving (or not) around the house on a normal day.

What I quickly discovered was that during a typical day, I really only walk about 3,000 steps while working at home. On days that I’m more active, I reach 5,000 steps; and if I go out and about, I may reach 7,000 steps. I never get close to the recommended 10,000 steps on a normal day.
Earlier in the summer, Rob and I were in Chicago for a conference. We took a brief walk on Saturday afternoon in the downtown area to get in some exercise after a long day of sitting in meetings. Later in the evening we walked down to the Navy Pier area to watch fireworks over the water.

After returning to the hotel, I checked my Fitbit and noticed that I had reached about 9,100 steps. I was so excited. “Rob, we have to go back out. I might actually be able to get in 10,000 steps if we walk up and down the block one more time. Come on, let’s go!”

Read this post in its entirety:
Getting Healthier 10,000 Steps at a Time

Tuesday, November 3, 2015

New ICD-10 RA Diagnosis Codes

How does ICD-10 affect rheumatology patients and their doctors?
Rheumatoid arthritis (RA) was previously represented by the ICD-9-CM code 714.0. Now RA and its many manifestations are represented by more than 300 individual codes that are grouped under two main categories: Rheumatoid arthritis with rheumatoid factor (ICD-10-CM code M05), and Other rheumatoid arthritis (ICD-10-CM code M06).

The increased number of codes allows for greater detail in documenting the specific manifestations of RA-related disease activity, such as identifying that the left shoulder joint is affected, or that a patient has rheumatoid lung involvement, or whether a patient tested positive for rheumatoid factor.

In my own case of RA, my 714.0 Rheumatoid Arthritis diagnosis has now been changed to “M06.09 Rheumatoid arthritis without rheumatoid factor of multiple sites.”

Examples of other ICD-10-CM codes related to RA disease manifestations:

M05.10 – Rheumatoid lung disease with rheumatoid arthritis of unspecified site
M05.352 – Rheumatoid heart disease with rheumatoid arthritis of left hip
M05.419 – Rheumatoid myopathy with rheumatoid arthritis of unspecified shoulder
M05.719 – Rheumatoid arthritis with rheumatoid factor of unspecified shoulder without organ or systems involvement
M06.071 – Rheumatoid arthritis without rheumatoid factor of right ankle and foot
M06.239 – Rheumatoid bursitis of unspecified wrist
M06.331 – Rheumatoid nodule of right wrist
M71.20 – Synovial cyst of popliteal space [Baker] of unspecified knee

I’m not sure what code would apply if you had seronegative negative RA with rheumatoid lung involvement as the code for rheumatoid lung disease with rheumatoid arthritis is M05.1 which falls under the classification of M05 which is Rheumatoid arthritis with rheumatoid factor.

With all of this in mind, no wonder my soon-to-be-retired rheumatologist said that if she had known exactly when all of this was coming, she might have retired a month sooner.

What do you think? Would having this greater amount of detail hiding in the numbers lead to improved quality of care?

Read this post in its entirety:
What's Your New RA Code?

Monday, November 2, 2015

Avoiding Catching Colds in Public

I’m a homebody...

It’s no big secret that I don’t get “out” much. I’m a work-at-home writer and musician who has practically everything she needs within a few dozen steps. I’m not sure that I’m truly missing out on too much because I frequently find public spaces to be overstimulating (except that I love that overstimulation when I’m in the middle of it playing my horn). The most common places I frequent on a regular basis, however, include the grocery store, doctors’ offices, and local restaurants.

I usually dread doing things like going shopping at the mall or being in large crowds. Overstimulation aside, there’s another reason that I avoid spending too much time in busy public places. People are often sick and the world is covered in germs. Ok, so that’s two reasons.

Don’t get me wrong; I’m not a germaphobe. I just notice a very predictable pattern to going out into the world. About two days after I’ve been on a public outing, I notice that my lymph nodes become slightly swollen and my sinuses may start dripping down the back of my throat. The effect is not terrible, but it does have me reaching for extra vitamins and OTC medication.

Dealing with a reduced immune system

A number of the medications I take work to reduce the immune system and a potential side-effect is frequent infections. Because of this, and the fact that I teach several children (frequently carriers of all the viruses that spread through the schools), I’ve worked with my students’ parents to encourage them to cancel lessons if the child has been sick, has had a fever within 24 hours, stayed home from school, or otherwise isn’t feeling well enough to be able to concentrate during the lesson.

Also, it is standard procedure that all piano students wash their hands with soap and water BEFORE touching my piano keyboard to try to further reduce the spread of germs. Some students and parents have taken this more seriously than others and I’ve had to crack down on kids who simply disregarded my instructions. I’ve also taught the children to never cough or sneeze on the teacher or the piano keyboard. Ever.

Read this post in its entirety:
Picking Up Colds in Public Places