Mark your calendars for the Joint Decisions Web Chat!


Many of you that follow my blog know that I’m really delighted to work with the people at Creaky Joints (www.creakyjoints.com). One of my favorite things they do are the Joint Decisions web chats. The next one, “Shaping Your Story: Managing the Mental and Emotional Challenges of Life with RA,” is next Wednesday, August 5 at 6:00 pm Central. What’s really exciting to me is that this chat will feature Eduardo Flores, aka Rheumatoid Arthritis Guy (www.rheumatoidarthritisguy.com). RA Guy was one of the first blogs I found after my diagnosis and his insight, honesty, and wisdom helped me as he has helped so many others. I encourage you to “tune in” for this chat that will focus on the importance of emotional well-being for people living with RA. In addition to RA Guy, the chat will feature health psychologist Dr. Laurie Ferguson of Creaky Joints and rheumatologist Dr. Theresa Ford.

Here’s the registration link: http://po.st/8uwCyU

 

Skin in the Game

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Skin in the Game

I have a new dermatologist. It wasn’t really a choice. My previous dermatologist of many years passed away and the practice was sold. My records weren’t even in the system when I called to make my annual skin-check appointment. It was time for a change.

My PCP recommended a practice that has several physicians and is conveniently located to my gaggle of other doctors. Looking at their website, I was a bit hesitant because the doctors all looked young, blond and thin. This, I thought, is a group devoted to trophy wives and Botox. The Dallas area is consistently rated one of the most vain cities in the U.S.. beating out cities such as Las Vegas and Miami. (I know, right? You should live here.) Looking a bit closer, however, I noticed that one of the doctors specialized in people with rheumatoid arthritis and other inflammatory conditions. It took me more than two months to get the first new-patient appointment, but I had my initial appointment last week with very positive results.

We don’t often think about it, but skin is the body’s largest organ…

Read the rest of the article here: https://rheumatoidarthritis.net/living/skin-in-the-game/

View from the Well (reprise)

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As I’ve sort of felt like I’ve been living in a well lately, I thought I’d revisit one of my favorite posts from 2011. Hope you enjoy.

Sometimes, not always, but sometimes, I believe that living with a chronic disease is like living in a well.

  • Living in a well makes you different and can isolate you from other people.
  • To do anything “normal” you first have to get out of your well, i.e., get over the pain, fatigue, etc.
  • Sometimes you need mobility aids to get you out of your well.
  • When people realize you’re in a well, they talk down to you.
  • The longer you’re in the well, the deeper the well gets, i.e., the harder it is to get out of and the less chance there is for a full recovery.
  • It’s dark at the bottom of the well, but sometimes there is light in the form of a new therapy that offers hope.
  • People who have never lived in a well may care, but they can never fully understand the experience.
  • Being in a well is a true underground movement and connecting to other well-dwellers is a good way to keep your sanity and keep hope alive.
  • Exercise makes it easier to climb out of your well each day.
  • Only you have control over how deep and how dark — or how shallow and light — your well is.

I hope whatever you find in your day, it finds you well.

Thanks for checking in.

Mariah and Me — Seven Years Later

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It turns out that my friend and fellow blogger Mariah Z. Leach and I received our RA diagnosis about a month apart. Mariah “celebrated” her seventh diagnosis anniversary in June and mine is coming up shortly in July. Mariah has encapsulated her seven-year journey on her personal blog.

Let’s face it, many of us suffered with symptoms months or even years before receiving a diagnosis – so we had the disease, we just didn’t have a name for it. But having a diagnosis is a watershed event. In one moment you go from searching for what’s wrong with you to looking for a treatment plan. You go from being “healthy” to being labeled with a chronic disease. The diagnosis is the first official step to what is currently a life-long journey.

Read the rest of the article on RheumatoidArthritis.net: https://rheumatoidarthritis.net/living/mariah-and-seven-years-later/

 

Actemra

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So after all the doctor visits, lab tests, phone calls, insurance approvals and associated confusion, I received my first shipment of Actemra — the latest biologic in my quest to find something that works. It’s an Interleukin-6 inhibitor and while I’ve read the literature on how this drug works, the main thing is that it’s a different kind of drug than I’ve taken before. I’ve worked my way through all the other drugs except Actemra and Rituxan and since I’ve “failed” on everything else, the hope is that a different kind of drug will bring some hope. The issue is that I seem to build up an immunity to the drugs — they’ll work for a while, then eventually my body figures them out and builds up a resistance to them, just like it will build up a resistance to any other biologic agent like germs and viruses.

I was most recently on Kineret, which is a daily injection, so the opportunity to switch to a bi-weekly injection was a welcomed relief. Additionally, Kineret has a citric-acid based preservative in it and taking it felt a whole lot like pouring lemon juice into a paper cut. Every. Single. Day. (Did not make me look forward to taking the drug.)

So I took the first injection last Wednesday evening and was pleasantly surprised that other than the first little poke of the needle, I didn’t feel the injection at all. So far so good.

It wasn’t until sometime Thursday afternoon that I realized that I felt better than I had in months. I had been otherwise distracted on Thursday. I had to get up at 5:00 am in order to get my husband to the hospital for an out-patient procedure. The procedure was supposed to take about 30 minutes but he wound up being in surgery for more than five hours. So while I was sitting in the surgical waiting area I realized that I wasn’t as sore and stiff as I had been for a long time, even after spending hours in a somewhat uncomfortable sitting area.

Unfortunately that feeling of comfort and euphoria only lasted about 24 hours. By the time I was able to take my husband home on Friday, I was sore, swollen, and gimping around all over again.

But that brief reprise gives me some hope. It takes time for biologics to work and I am hopeful that if it worked for a short time on the first injection, it will work longer and longer each time.

I hope that your day brings relief and happiness as well. Thanks for checking in.

PS: My husband is doing great after his procedure.

RheumatoidArthritis.net TrialLink


There’s great news from RheumatoidArthritis.net. Please see the following announcement concerning TrialLink. To see the original announcement (with all the working links), visit RheumatoidArthritis.net here: http://rheumatoidarthritis.net/clinical/you-can-make-a-difference-with-rheumatoidarthritis-net-triallink/

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We are excited to let you know that there is a new opportunity for you to make a difference in rheumatoid arthritis (RA) research!

While most of us know that new medicines to treat RA are being examined in clinical trials, few of us actually have the tools to access those trials. We want you to have a place to share your voice and really make a difference in the future of RA treatment.

Starting this month, we will be offering the chance for RheumatoidArthritis.net community members to learn more about clinical trials performed by organizations researching new treatments for RA.

What sort of research is being conducted for people like me?

There are many ways to take part in research, one of which is to participate in a clinical trial.

      • Treatment efficacy & safety: This could mean taking part in a study for a new treatment that is in development, or even for an existing medication that is now being examined in RA.
      • Trial design and drug development: Researchers may also look for your feedback in the design of a clinical trial or the treatment itself (for instance – should it be an injection or a pill?). To learn more about participating in clinical trials, click on the link above and go to the RheumatoidArthritis.net website.)
      • Behavioral and impact studies: Other research focuses on gathering information about how people with RA manage their condition and how it impacts their daily lives. Results from our own RA in America survey demonstrate the far-reaching impact of RA.

Why does this matter?

No one understands what it is like to live with RA better than the RA community! Taking part in cutting edge research or providing input on how studies are conducted will have a direct impact on those living with RA.

How do I find out about new research opportunities?

When new research opportunities become available, we will share those with our community members via email and social media. Please note that registered members of the community will always receive the first notifications regarding opportunities.  You can register by going to the link above and becoming a member of the RheumatoidArthritis.net community.

Progress!

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After what seems like forever that I’ve been whining, I thought I would update the blog with some positive progress. One thing I’ve learned over the years is the truth in the statement, “This, too, shall pass” and many of the dispiriting things with which I’ve been dealing lately are, thankfully, on their way out.

  • The insurance hurdles on my new RA drug, Actemra, have been cleared and I received my first shipment from the specialty pharmacy today. There was a mix up in the dosage amount (they sent me enough for a weekly injection rather than one every other week), so the good news is I have twice medication as much for the same copay. I will provide some updates once I start taking it and it has some time to start working. And hopefully this will also mean that I can start tapering off the prednisone.
  • Physical therapy on my knee is almost over. My last appointment is tomorrow. I do think that it’s helped, which is a good thing. It’s also gotten me into the swimming pool for a workout either before or after my appointment which is even a better thing.
  • I had the diagnostic procedure for the GI issue and things are about as good as they can be. There wasn’t anything horrible found and the issues I was having don’t seem to be related to my RA or other inflammatory diseases which is all good. I’m on a two-week course of medication to calm things down. At some point in the future if I develop issues again, I may need to have some corrective work done, but for right now, things are improving.
  • The antibiotics seem to have cleared up the infected tooth I had.

We’re still facing some of my husband’s medical issues and work continues to be a bear, but there is a huge sense of relief each time one of these major things is resolved.

Thanks so much for listening to my whining and for all the great support I have received the last couple of weeks. There are many things for which I’m grateful and the virtual friends I’ve made through this blog are certainly at the top of the list.

I hope that whatever is on top of your list today brings a smile to your face. Thanks for checking in.

Just one thing at a time, please

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You would think that whoever is in charge of the universe would give people with a chronic illness a break and not complicate their lives with other major events. Instead it sometimes seems like the universe takes a certain delight in complicating the lives of those of us who already have their hands full just trying to make it through the day.

Such is the situation in which I find myself.

-Credit to Research Rockstars

-Credit to Research Rockstars

Because of elevated liver enzymes, I stopped taking my DMARD, leflunomide/Arava, in late March and the (count ‘em) eighth biologic I’ve tried failed, so I’m off of it as of the first of May. Basically the only thing standing between me and a major RA meltdown is 10 mg of prednisone a day – which has its own complications. I’ve been off the RA drugs now for six weeks and am waiting for the slow wheels of insurance precertification to grind its way to fruition to start one of only two biologics that I have yet to try. At least I saw my new drug, Actemra, listed on my specialty pharmacy website account so my rheumy’s nurse actually sent it in. No clue of when it might be approved and actually make its way to me.

In the meantime, I developed this icky gastrointestinal problem that sent me to the emergency room. A follow-up visit with my GI doctor has resulted in an upcoming outpatient procedure to correct the situation (if possible) or at least figure out what is going on. Interestingly, my GI doctor thinks that the issues may be connected to my RA because the start of the symptoms pretty much coincided with my going off of my RA drugs. I have a slightly different theory but the good news is I have doctors that take into consideration that I have RA and make that part of the overall mosaic of diagnosis and treatment that I receive.

In addition to these issues, working what has turned into a more-than-full-time job and running a household, I have physical therapy twice a week on my knee. The difficulties I’m having with my knee may or may not be related to RA and may or may not be improved with physical therapy. But I trust the doctor that ordered the physical therapy and I like my therapist and if there’s a chance it will help, I am happy to try. I was telling my physical therapist that I felt like I’ve got all the chainsaws, flaming torches, and sharpened swords juggled but if someone added so much as a ping-pong ball to the mix, it was all going to fall apart.

Sure enough, I got home that evening and discovered a badly infected tooth that led to an emergency visit to the dentist the next morning. The good news, I guess, is that I’m not currently on immunosuppressive RA drugs so my chances of getting this under control with some (painful) intervention from the dentist, a round of antibiotics and extra attention to oral hygiene for a week or two is pretty good.

When I step back, I know that all this, too, shall pass and I know unequivocally that, even with these bumps in the road, I have a wonderful life with many, many blessings. And I have heard it said that God doesn’t give us more than we can handle. There are just times that I wish He didn’t have quite so much faith in me.

I hope whatever is on your agenda these days are also blessings in your life. Thanks for checking in.

 

Aaargghh! (continued)


Maybe it’s just me or maybe it’s just me on prednisone, but it seems like my dealings with the medical profession are increasingly frustrating lately. This is unfortunate because I seem to be having a lot of medical interactions these days.

(The rest of this post is just going to be me venting, so if you want to skip it, please change the channel now. :-) )

I reported earlier that I had a GI situation for which I couldn’t get into see the gastroenterologist until the first week of July. Okay. That wasn’t what I wanted, but I was dealing with it. Until Sunday when said situation sent me to the emergency room.

After exams, blood work, consultations and discussions, the ER guy said I need a surgical procedure to correct the situation. He was going to consult with my GI guy and come back with a plan.

After speaking to my GI guy, the ER doc came back and said that I had basically two options. They could keep me in the hospital and they could move forward with the procedure, assigning whichever of my GI guy’s partners was available. Or, according to the ER guy, the GI guy said that he would somehow work me into his schedule in the next few days before he left town.

It’s not really a life-threatening situation and I don’t like hanging around hospitals, so I opted to go home and schedule the procedure with the doctor that I know.

So it’s now Monday. I spent a great deal of time today coordinating with GI guy’s staff (who took me at my word about what GI guy said to the ER guy about doing the procedure). I spent even more time getting things coordinated with the surgical center. My husband rearranged his schedule this week so he could be with me and that included rescheduling a rather critical medical procedure of his own. I reorganized meetings, moved things to conference calls, cancelled physical therapy appointments, and basically cleared the decks for the second half of the week so I could have the procedure and have recovery time.

Then GI doctor’s office calls me back. They said they finally talked to the doctor who saw that I had been scheduled for the procedure Wednesday morning. He said what he told the ER guy was that he would work me in to be seen IN THE OFFICE for an exam — not that he would schedule the procedure (for which the ER doc was going to admit me and do that day).

I understand him wanting to see me for himself before committing to a surgical procedure. But it may be another week before he can schedule me for the procedure (assuming that he deems it necessary). If I had stayed at the hospital, I could have already had it done and be home (and saved $200 emergency room copay, which they waive if they actually admit you).

I’m sure it was a simple miscommunication between what the GI guy said and the ER doctor heard, but it certainly has caused me (and my husband) an amazing amount of frustration today.

ARRRGHHH! (This is steam coming out of my ears …)

Sorry to keep venting lately, but I really appreciate you listening. Thanks for checking in.

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