Updates

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I keep thinking I’ll find time to do a post on all of my latest adventures but the Updatecalendar keeps ticking by, so I thought I’d just do some quick updates.

  • I told people that when I “retired” I was going to learn how to use Twitter, call the dishwasher repair guy and finish my second book. I haven’t done any of the above. As the great American humorist, Erma Bombeck, often said, “Life is what’s happening as you make other plans.”
  • Two weeks ago (the first Monday of my retirement), I had my first Actemra infusion. I’ve been on the self-injectable version but it wasn’t quite doing the job. I’d feel better for a couple of days, then it would wear off. My rheumatologist suggested that we switch to the infusion because she can adjust the dosage. This in lieu of changing drugs yet again. The only biologic that I haven’t been on is Rituxan. If I also “fail” on that, I am out of biologic options. So far, I haven’t had good results after the infusion. We started on the lowest dose and it hasn’t seemed to helped at all. Fortunately since I’m not working full time I can take it a bit easier.
  • I am also thinking that I will discuss with her adding back in another DMARD, perhaps going back to methotrexate which I hate because of the brain fog. Although now that I’m not working, I will be better equipped to deal with that situation.
  • Per my earlier posts, my liver enzymes have been elevated. As I expect that we will increase the Actema and that will probably cause even more issues, I went to see my gastroenterologist to see what might be done to help support my poor, overworked liver. I really love this guy and his realistic approach to medicine and after some discussion, he recommended that we do a liver biopsy. He said that the best thing we could do is rule out there is any disease causing the elevated liver enzymes. In my particular case (and I would surmise in many RA patients as well), autoimmune hepatitis can’t be discounted without the test. Once we do the biopsy and rule out liver disease, then my rheumatologist can increase the RA meds. Even though my liver enzymes might be “high”, the “safe” range is expanded. The liver biopsy (which doesn’t sound very pleasant as you are awake when they do it), is scheduled for about 10 days from now — right before my next infusion.
  • Scheduling the biopsy procedure was greatly complicated by my current insurance situation. At the end of November I changed from my company paying the group insurance to COBRA where I pay the premium, which I did right before Thanksgiving. Unfortunately due to the holiday, the premium was showing paid on the COBRA site but on the eligibility part of the system, it showed my coverage ended on November 30 and so therefore they wouldn’t verify benefits for a procedure being scheduled in December. Didn’t matter that they could check and that I paid the premium, without their computer system having that checkmark, nothing was going to happen. I spent hours on the phone on November 30 to no avail. Patience actually paid off. The very next day, on December 1, everything had percolated through the system and I was shown as having coverage through December 31. That’s the good news. The bad news is that my COBRA coverage is changing plans effective January 1 and I have to be enrolled and pay the COBRA premium on a new plan which then has to percolate through the system before I can verify coverage for January. Sheesh.
  • While I have coverage and fully paid deductibles, I had made an appointment with my ortho surgeon to order some physical therapy for my (replaced) left knee. In the meantime, I have developed severe pain in my left heel. Consulting Drs. Google, WebMD, and MayoClinic.com, the symptoms are consistent with bursitis of the Achilles tendon, but unfortunately also with a torn Achilles tendon. The bursitis is easy. The torn tendon is not. If that’s what it is, it could require surgery and will require 12 to 16 weeks in a cast. I find out tomorrow what’s going on there.
  • In the meantime, I have filed a disability claim with my former employer’s disability insurance plan (to which I had paid in more than $1,000 in premiums this year) as I retired because I am no longer able to work full time. That was almost three weeks ago and I’ve yet to get a determination. They keep asking for further information from my doctors and I can see a long, drawn-out process where they deny and I appeal. In the meantime, I have no income coming in past my final employment check. It’s very frustrating.
  • That being said, I do have retirement savings and I have a meeting next week with my tax attorney to figure out which (very small) pile of money I should start tapping first. There are trade offs between tax consequences vs. growth and I’m smart enough to know that while I could probably figure it out, I’m better off asking for help from someone who does this for a living.
  • Thanksgiving was good, quiet, fun. My husband and I went to our neighbors for Thanksgiving lunch. She made most of the meal. I made my world-famous chorizo cornbread stuffing and a vat of my sinful gravy. So much for my diet.
  • But, because of my Saxenda prescription, I’ve been eating less and have lost about 7.5 lbs in the past month. I had started back to working out in the pool, but due to the pain issues in my heel have postponed any more workouts until I see my ortho doctor. I’ll do the physical therapy for my knee (if he prescribes it) at the same hospital facility where the pool is, so I am hopeful that will keep encouraging me to work out. Assuming I’m not in a cast.
  • I am now 19 days and counting before I can quit wearing my brace which supports my recuperation from spinal fusion therapy. Being free of this encumbrance will be a terrific Christmas present.

I think that brings you up to date. Everyone has been asking me how I’m enjoying my leisure time and, frankly, I’m not sure how to answer that question because I really haven’t had any leisure time to evaluate. I have been able to take one or two afternoon naps over the last couple of weeks and just knowing that’s an option is wonderful.

I hope that whatever updates are happening in your life are blessed and reflect the wonderful holiday season we’re entering. Thanks for checking in.

Physical Evidence

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Like many RA patients, there is often a gap between how I feel and what my lab results or other tests actually show. This is compounded by the fact that I am R factor negative, meaning that a standard test for diagnosing RA comes back normal (even though I’ve lost three major joints to the disease). Therefore, whenever I get physical evidence about a condition that correlates to what I feel, it feels like a victory.

I recently made the difficult decision to leave the workforce. I’m still struggling a bit on whether to describe myself as “retired” or, as I left largely to deal with my health, as “disabled”. I’m not much of one for labels of any kind so I’m ignoring the discussion at the moment. I’ll figure it out later when it becomes important to things like disability claims.

One of the things we all know is that stress is not only an issue unto itself, it generally magnifies other issues you may have. For someone with RA, it can trigger flares and increase fatigue. I wear a Fitbit HR which, among other things, tracks my heart rate which is a pretty clear indicator of stress.

In the picture to the right, the recorded resting heart rate of 101 bpm (which is extremely high by any Heart ratestandard) was my final Friday at work when I was scrambling with my team to get a major project out the door. This high heart rate is a direct reflection of the amount of stress that I was under leading up to my “retirement”. (You can see the upward slope leading to that final day.) Since that time my resting heart rate has dropped steadily. Yes, it’s still high. However, the dramatic decline headed back to more normal levels once I eliminated the stress of work from my life is amazing. To me, this is just visual proof that I made the right decision.

My immediate focus is to get my health back into reasonable limits. I am working on my weight, my heart rate and stress levels. All these things will positively impact not only my RA, but also my blood pressure and cholesterol and triglyceride levels. Being more physically fit will increase the overall quality of my life.

I wish there were Fitbit monitors for other aspects of my life that would automatically track the pain in joints, the number of times my fingers are swollen, or other indicators that my RA is active. Someday there very well be. Until that time, I’ll use the tools I have to help track my progress and celebrate victories like this one.

Wishing you victories both large and small in your life today. Thanks for checking in.

 

Another (paid) RA research study

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I happen to already be registered with Focus Pointe Global which does medical research — everything from surveys to clinical trials. They are currently looking for participants in an upcoming study on RA. I’ve included the details below. Links are provided to register and/or ask questions.

Focus Pointe Global, a National Medical Research Company, is currently looking to speak with people living with Rheumatoid Arthritis for an upcoming research opportunity. There are no sales involved and all information collected during the research process will be kept confidential and used for research purposes to help those in the healthcare field better understand the needs and challenges of living with RA.

 By participating, you will be able to give direct feedback to professionals that can actually make a difference. Participants will be compensated for their time and efforts. This opportunity is available nationally.

If you are interested, please click this link, sign up, and fill out the short survey and you will be contacted within the next month: http://bit.ly/RAStudy

If you have any questions, please email: medconditions@focuspointeglobal.com

 

Making a List …

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One of the topics we discussed at the recent Joint Decisions Empowerment Summit** was doctor-patient communication. This is actually a pretty highly charged topic with people on both sides of the equation having strong feelings. I’m sure that the vast amounts of medical information available on the Internet has greatly influenced those discussions. There are no doubt doctors who wish that some of their patients would lose Internet privileges forever while many of us on the patient side are grateful for the vast repository of information at our fingertips that we can access and research.

One of the points made during our Summit discussion is that we generally have about 15 minutes with our doctors on a routine checkup. That’s not a lot of time and so we have to make the most of the time we have. Getting a voice in the conversation (while not disrespecting your doctor) is essential to this goal.

My friend Pollyanna Penguin recently posted about making a list so she would remember all the things she needed to discuss at her much belated appointment (https://pollyannapenguin.wordpress.com/2015/11/20/hospital-appointment-only-7-months-late/). This is a technique I use as well because it (1) helps set the stage for the areas I need/want to discuss during the appointment and (2) helps me remember things that I might otherwise forget. Other bloggers at the Summit also used lists. I tend to just hand my list to the doctor at the beginning of the appointment. Other bloggers, however, did so stealthily including secretly writing notes on their hands (like they were cheating on a test …).

There are a lot of other things to help support doctor-patient communication. Some of these include:

  • First you have to find a doctor who will actually listen to you.
  • In addition to lists, I also will take use my phone to take photos of swollen joints, rashes, etc. that may or may not be apparent when you actually get to see the doctor. That way I have something to show my doctor during the appointment.
  • If you have a desired outcome from the appointment, start there. Instead of saying (for example) you’re having increased pain, start out saying something like, “I would like to discuss additional pain medicine,” or “Do you think physical therapy would be helpful for ..”, or “Based on my increased pain levels, do you think it’s time to evaluate changing my treatment plan…” The doctor may not, of course, agree with you, but at least there’s a start to the conversation and the doctor knows which option you prefer.
  • Be specific if you can. Don’t just say your pain levels have increased, indicate where and whether the pain is new or simply worse in the same areas.
  • Don’t fall into the trap of “today”. Rating how you feel “today” on a pain scale or even generally does not apply to RA. You might have been totally incapacitated the day before and then be well enough to do handstands in the doctor’s office. When asked those questions, I tend to respond, “Since the last time I saw Dr. Rheum, I have felt XYZ.”

DO NOT take in a stack of Internet printouts and expect your doctor to read them and respond in the course of a 15-minute appointment. Better you should summarize and discuss along the lines of, “I read some interesting research from Big University the other day that said XYZ. Is that something that would be applicable to me?” Of course, if they ask about the study, it’s nice to have a copy with you just in case.:-)

But overall, you have to be honest with your doctor. If something is not working, don’t be afraid to tell them. They can’t fix what they don’t know.

I hope whatever conversations you have today are productive and bring joy to your life. Thanks for checking in.

**Janssen Biotech, Inc., paid for my travel expenses for the summit. All thoughts and opinions expressed here are my own.

Getting Paid for Psoriatic Arthritis …

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One of the good news/bad news things about having a blog is that other people reach out to you to help publicize various things that they think will interest your readers. Often this is a good thing as there is news, education, or offers that can help people with RA and so I’m happy to pass along the information.

I received the following information about a Psoriatic Arthritis survey that pays the participants $100 for their opinions. I’m passing this along because I believe that information is the key to a cure for all kinds of arthritis and the more discussion there is, the more information can be gained.

That being said, I have not had the time to really investigate this opportunity for its validity. If you’re interested, I encourage you to check it out, but please do so carefully.


Do you have Psoriatic Arthritis?

We Need Your Opinions!

The Henne Group is looking for individuals diagnosed with Psoriatic Arthritis in your area to share their experiences with this condition.

If you qualify, you will be asked to participate in a 60-minute in-person interview for which you will be given $100.

This is for research only. We are not selling anything. Participation is confidential.

It will be held in the following cities:

San Francisco on December 1st
Houston: December 3rd
Philadelphia: December 7th
Atlanta: December 9th
If you have any questions or want to see if you are eligible, please call
The Henne Group toll free: 415-348-2933 or Visit the link: http://bit.ly/Psoriatic_arthritis

The Henne Group is a market research company located in San Francisco. We are working to understand health issues that people face. Please visit our website at http://www.thehennegroup.com.

Thank you for your help,

Summit, aka, also known as being on top

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Full Summit Team

Full Summit Team (Bloggers, Speakers, Joint Decisions, Janssen, Tonic Life Communications) in Sausalito, California

It seems like forever since I posted but I have really, really good excuses (really I do).

Two weeks ago it was once again my great pleasure to attend a Blogger Summit hosted by Joint Decisions (http://jointdecisions.com) and sponsored by Janssen Biotech*. If you don’t know about Joint Decisions, it’s a great informational/educational/research resource and I encourage you to get better acquainted with them. The overarching goal of the Summit is to explore both topics that are important to RA patients and channels in which to best deliver the information. I’m going to delve into the topics in future posts, but you can look forward to things like nutrition, conversations with your rheumatologist, and biologics. In addition, if you have ideas on education/information that you think would be helpful, feel free to leave a comment on this blog and I’ll make sure it gets passed along to the Joint Decisions team.

Joint Decisions has previously held a series of live Web Chats on specific topics and one of the things we explored was whether there was a better way to convey this information. Some of the things we discussed were shorter formats (the chats came with a one-hour commitment) and on-demand videos that people could watch when their schedules allowed. I think the information is too important for Twitter, but podcasts were also discussed. I would love to get your feedback on what kind of information you’d like and how you’d like to get it. Perhaps just a (now) old-fashioned email blast with embedded links to further content would work for you. I’d love to hear from you on this.

The bloggers that attended were some of my favorites and the Summits last year and again this year have allowed me to make a personal connection with them, which is amazing. If you don’t already follow these terrific people and fellow RA patients, then please take time to get acquainted. There is a lot of knowledge and some great perspectives you can tap into:

I have lots of updates for you on the personal front re: job, treatment plan, etc. But I will save those for next time. Thanks for checking in.

**Janssen Biotech, Inc., paid for my travel expenses for the summit. All thoughts and opinions expressed here are my own.

Mark Your Calendars – Creaky Joints Chat #4

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Web chat #4 promotional graphic (cover photo)

I’m really thrilled. I have the great privilege of attending an Empowerment Summit along with some of my other favorite bloggers next week. It’s being hosted by Creaky Joints and underwritten by Janssen Biotech and held during the American College of Rheumatologists. One of the most exciting aspects of the Summit is that Creaky Joints will be holding its fourth and final web chat of 2015 on Saturday evening, November 7. The topic is important — Real Talk: Breaking Down Barriers in Patient and Rheumatologist Communications.

Several of the bloggers from the Summit will be involved with the chat along with the truly funny guy, Matt Iseman and (yes, really) people with an MD degree! Here are a few clips (one short, two long) about the web chat: video clip 1, video clip 2, video clip 3.

Please register and please attend. Registration and more information here:  https://attendee.gotowebinar.com/register/6804229121377827586

 

Thanks for checking in.

 

Can you help RA Warrior?

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We all have those special people in our lives that have helped us, especially with our RA needs. For me, one of those people has been RA Warrior (www.rawarrior.com). Not only did her blog provide encouragement, information and inspiration for me, her tireless advocacy for RA patients has made a difference to our community as a whole.

I’ve missed her for about a year. But hey, it happens. People get busy. They do other things. Blogs fall by the wayside.

I wish it were that easy for RA Warrior. A terrible personal situation has turned her life and that of her young son upside down. She has swallowed all embarrassment and has come back to the surface and asked for help.

I’m there for her as much as I can and am asking that if you can find it in your heart (and wallet) to help as well, please do.

Here’s the story as expressed in a letter written by her uncle. There’s a link to a Go Fund Me page and I encourage you to contribute whatever you can:

Dear RA Warrior friends, fans, & family,

Within the context of family history, my niece and her brother have always held a special place in my heart. Last year, I learned that Kelly had fled from her own home with two children, finding safe haven in the home of dear friends. A few weeks later while travelling to visit, appalled at the long and problematic history, I went quietly about verifying the backstory. Within a few days, I knew that she had exercised the only remaining option for ensuring the safety and well-being of her youngest child.

In late summer 2015 (at the worst possible time), her attorney suddenly advised all clients that this law firm was dissolving! Facing live court events in September, with no sense of civility or patience from the opposing attorney, Kelly had to appear before the judge alone, and made a successful argument for sufficient time to engage a new lawyer.

Behind the scenes, while searching full-time for several weeks, through phone interviews, many inquiries, and digging for references, we identified an experienced family law firm. Scraping together nickels, dimes, and a few miracles, Kelly was able to retain an experienced and compassionate attorney. Although, with case-management in shambles, and serious downside risk for her son, while Kelly’s new attorney has already demonstrated considerable expertise, many-many hours of legal work are yet required, and the end is not yet in sight.

To get to the heart of the matter, our family needs your help. Kelly and Roo will continue to need sufficient assistance to keep the law firm engaged, retain expert witnesses, and pursue ongoing investigations. I have undertaken the management of beneficiary fundraising for Kelly and Roo (GoFundMe). We are all continuing in prayer for a just outcome, and release of financial provisions. This is the first time any of us have deployed this internet mechanism known as “crowd-funding”, yet this I know: this is what “family” has always done for one another.

 

Doctors, Disability and Whining

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So last week and this have been filled with doctors. As posted earlier, I have a good bill of health from my neurosurgeon who did my recent back surgery and also had a fairly rewarding conversation with my PCP’s PA about weight loss.

I had a regular follow-up with the orthopedic surgeon who did my hip and knee replacements. The good news is he says both replacements are looking great, which is really positive news considering the hip replacement is now seven years old. Most joint replacements need revisions or replacing after 10-12 years so I’m encouraged. The bad news is that he’s making noises that we might be replacing the right knee sooner rather than later.😦

Today I had my regular rheumatologist’s appointment. With the surgery and trying to get caught up with stuff at work, I really haven’t had time to think about it. I’ve just been taking my Actemra once a week and going on about my business. I told her that taking the Actemra injection was like taking a 5 mg or 10 mg prednisone tablet. It helped for a day or two, but then wore off. She has suggested that we try to get the insurance to approve Actemra infusions where she can modify the dosage to see if we can’t get a better result. She also wants to be a bit more aggressive with pain management so she has prescribed some hydrocodone. At this point, it’s just one tablet at night to help me sleep. I’m really not much of a fan of hydrocodone but I keep having doctors insist on prescribing it for me. I should be grateful. There are a lot of people who really need it that, because of the new regulations, are having trouble obtaining it.

I got my lab results back prior to my rheumy appointment and they, for the most part, looked good. All my labs have always looked great. The one result that was out of line was one of my liver enzymes (again). But it was just slightly high and is probably because I’m still on Lyrica after the surgery to help with some diminishing but continued numbness in my right thigh.

The big news is that I formally gave my notice to my company effective mid-November. I am in the midst of a major project and I don’t want to leave them hanging, so I’m going to wrap that up before I leave. One of the benefits offered at the company is disability insurance (both short-term and long-term), so I have applied for benefits. If awarded, I will receive a large percentage of my current salary up until my full retirement age. I’m not sure what they’ll say about RA being a pre-existing condition, etc. but I guess we’ll see. So in the midst of everything else, I’ve been scrambling trying to get my doctors to fill out the (really stupid) forms and get them in so we can get a determination. I never really actually thought I’d be retiring early due to health reasons — I more kept the insurance so I’d have income during surgery recovery if I needed it. But the point is I’ve been paying the premiums all this time so there’s no reason not to apply for the benefits. All they can say is no and I already have that.

The good news is that I discussed this decision with all my doctors that I’ve seen recently and they fully support my decision to step out of the corporate world. That’s a bit sobering. It’s almost like I’m seeing myself through their eyes for the first time. Not one of them said anything like, “Are you sure you’re ready for that?” In fact one of them said they have been amazed that I’ve worked for as long as I have.

Of course this will play havoc with my insurance. I’ll be covered by company insurance in November. Then in December, I’ll still be covered, but I’ll be paying for it through COBRA. Then in January, I’ll still be on COBRA, but they’re switching insurance companies. Am I nervous making three major changes in my insurance coverage in three months? You bet.

In other news, Dallas is set for a major rain event. We had enough rain in May that a significant part of our area finally came out of the five-year drought we’ve been enduring. But it’s barely rained since. In fact, October, which is one of our wettest months, has not logged more than a trace of rain all month. With highs in the 80’s and 90’s, it might as well be early summer. But all this sunny weather has lulled me into a false sense of security. Rain and stormy weather on the other hand, send my joints into a tail spin. So with four days and 3″ to 6″ of rain in the forecast, I may be glad that I’ve got that new prescription for pain medication.

Overall none of this is really bad news and some of it is actually quite good. I think I’m just tired with dealing with it all. I’m tired of not feeling well. I can’t remember the last time I actually felt good. I’m tired of the stupid back brace and I’ve got two more months to go on my three-month sentence. I’m tired of doctors and needles and insurance claims. The thing that keeps me going at the moment that this time next month, much of this will behind me. I’ll be officially “retired”, the determination on the infused Actemra will be in, and the determination of the disability will be in. My biggest problem should be finding something new to whine about.

Thanks so much for “listening” to me whine and thanks for checking in.

Interesting discussion(s) on pain …

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I recently ran across https://healthskills.wordpress.com/, a self-professed blog for “Health Professionals Supporting Chronic Pain Self Management.” While intended for health professionals, I’ve found the blog to provide insightful and compassionate discussions of pain management and the effects of pain.

I invite you to explore the entire site, but I’ve provided links to two of the posts that really resonated with me. The first dealing with the impact of pain acceptance and the second about the “them-and-us” attitudes that some health care professionals have concerning their patients dealing with pain. The second asks the highly charged question of whether or not patients (who actually experience the pain) shouldn’t have a voice in the discussion. I know, what a concept, huh?

I hope that you find the site as thought-provoking as I have. Thanks for checking in.

https://healthskills.wordpress.com/2015/10/19/pain-acceptance-rather-than-catastrophising-influences-work-goal-pursuit-achievement/

https://healthskills.wordpress.com/2015/10/12/them-and-us/

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