Two (Shuffling) Steps Forward

I had an amazing time at the family reunion in Memphis and travel was not nearly as bad as I feared it would be. I’m really grateful to my hubby, who helped my aunt get from her wheelchair in and out of the car- with my foot and general pain it would have been difficult if it had just been the two of us. He’s truly wonderful! I miss the Memphis weather, too- it was 10F cooler and less humid. I’m not ready for Florida summer! Our storm season is starting early this year, which is not so great (although we really need the rain). I need to update our emergency supplies. I am really, really happy to have my “little truck” now- it will handle flooding much better than the sedan did.

So, post-doctor check-in time:

• I have two more weeks in my orthopedic shoe and need to keep up soaking in ice water. I still have some swelling and I’m trying to not let that worry me. In two weeks I can start “weaning” off the shoes and walk around at home barefoot. YAY! I really dislike wearing shoes at home (I usually leave them by the front door) so that last six week have been a trial.
• Surprise! I’m allergic to fire ant venom. I now have *two* epi- pens in my purse and meet with the doctor next week to start a series of shots to (hopefully) reduce my reaction. I’m not thrilled, but it has to be done. The double-pack came with a “practice” pen. I put it to use using both right and left hands, and will have hubby practice on me as well in case he ever needs to do it. I really do need a larger purse now, sadly.
• I just ordered a new pair of arthritis gloves. I love my IMAK gloves dearly, but they don’t give my thumbs enough support when my OA is flaring and do not reach to my fingertip joints (where I also have OA). I aggravated my right hand on Monday and it’s been a rough couple of days. I’ll post a product review when they arrive.
• My cubital tunnel is acting up- usually as a “buzzing” in my hands or elbows. I need to get back in the habit of using my elbow pads and not leaning on my arms so much.

I am also sharing a bunch of links passed along in my ChronicBabe newsletter because I think they’re amazing:

• Great fibro infographic: http://www.fibrocenter.com/navigating-fibromyalgia.aspx I don’t have fibro myself but know folks who do, and the references to facts in this graphic are wonderful for explaining what fibro is and who is affected by it.
• One for Mental Health Month: http://nl.stoptimestudio.com/t/y-l-jlkyudl-kihjdlwj-v/ Being open about and dealing with my mental health issues continues to be one of my greatest struggles in dealing with chronic pain and illness.
• Amazing new pill bottles for the blind and partially-sighted. I think these will be wonderful for seniors as well! http://medgadget.com/2012/05/inclusive-pill-bottles-for-the-blind.html They’re not available yet, but it looks like you can support the project if you’d like to see them produced in the near future.
• Beautiful pill purses and pillfolds: http://nl.stoptimestudio.com/t/y-l-jlkyudl-kihjdlwj-f/ Already put a pillfold on my Amazon wishlist! This would be much better than what I currently do: mixing my midday pills in a large bottle that rattles and having to sort them out every day. Unfortunately, I haven’t found a sectional container that can easily hold 7-8 pills (4-5 of them “large-ish”). From the pictures, this looks like the compartments are large enough, and I like the big ring to make the zippers easy!

I am really looking forward to the three-day weekend and catching up on some rest! I had to stop my allergy meds leading up to the ant venom tests and I’m not quite back to normal yet (I had a nice secondary reaction from the tests). I was also reminded that one of my primary meds in a blood thinner, because every needle made me bleed. Usually it’s not so bad, but it does explain a few things.

Mayo Clinic: Standard Heart Disease Risk Tools Underrate Danger in Rheumatoid Arthritis

Originally posted http://www.mayoclinic.org/news2012-rst/6893.html Monday, May 12, 2012

ROCHESTER, Minn. — Heart disease risk assessment tools commonly used by physicians often underestimate the cardiovascular disease danger faced by rheumatoid arthritis patients, a Mayo Clinic study has found. Inflammation plays a key role in putting those with rheumatoid arthritis in greater jeopardy for heart disease, yet many cardiovascular disease risk assessment methods do not factor it in, the researchers note. More work is needed to figure out what drives heart disease in rheumatoid arthritis patients, and more accurate tools to assess that risk should be developed, the authors say. The study is published online in The American Journal of Cardiology.

In rheumatoid arthritis, the immune system attacks tissues, inflaming joints. It can also affect other parts of the body. Rheumatoid arthritis patients have a higher risk of early death than the general population, and previous research suggests cardiovascular disease is the main reason. The Mayo study gauged the accuracy of two commonly used tools for assessing heart disease danger — the Framingham and Reynolds risk scores — and found they substantially underrated cardiovascular disease danger in women and men with rheumatoid arthritis, particularly in older patients and people who test positive for rheumatoid factors, proteins produced by the immune system and often associated with rheumatoid arthritis.

 

“This study emphasizes that patients with rheumatoid arthritis are at higher risk for heart disease, and that conventional predictors of risk are not adequate for estimating this risk. Physicians caring for patients with rheumatoid arthritis should be aware of this heightened risk even when conventional risk factors seem to indicate no increased risk, and consider measures to assess and lower CV risk in these patients,” says co-author Eric Matteson, M.D., chairman of Mayo Clinic’s rheumatology division.

 

Among those studied were 525 patients over 30 who were diagnosed with rheumatoid arthritis between 1988 and 2007 and had no previous history of cardiovascular disease. The study used medical records from the National Institutes of Health-funded Rochester Epidemiology Project, whose resources make Olmsted County, Minn., one of the few places in the world where researchers can examine medical data on virtually everyone in a defined geographic population to find the true frequency of certain conditions and the success of treatments.

 

The patients’ 10-year risk of developing cardiovascular disease was measured using the Framingham and Reynolds risk scores. The mean follow-up period was 8.4 years; 84 patients developed cardiovascular disease during that time. The observed heart disease risk turned out to be twice as high among women and 65 percent higher in men than the Framingham risk score predicted, and the Reynolds tool had similar shortcomings, researchers found. Patients 75 and older proved to be three times more at risk than the Framingham score indicated. Patients with positive rheumatoid factor also had more heart disease events than the risk scores predicted.

 

“Ongoing research is attempting to determine how inflammation leads to increased cardiovascular risk in rheumatoid arthritis, and what treatments for rheumatoid arthritis might reduce this risk,” Dr. Matteson says. “Further work must also evaluate just how patients with rheumatoid arthritis should be managed to detect and reduce their risk for cardiovascular disease.”

 

The study was funded by grants from Pfizer Inc. and the National Institute of Arthritis and Musculoskeletal and Skin Diseases. The co-authors are Cynthia Crowson, M.S.; Veronique Roger, M.D.; Terry Therneau, Ph.D.; and Sherine Gabriel, M.D.

###

About Mayo Clinic

Mayo Clinic is a nonprofit worldwide leader in medical care, research and education for people from all walks of life. For more information, visit MayoClinic.com or MayoClinic.org/news.

Happily Home

The family reunion went well, and it was wonderful to see everyone. I wish we could have had a little more time together, and that a few folks who couldn’t make it had been there, but in all it was great to get together for a few days, catch up, get to know my aunt and celebrate her birthday, and just have a good time. This was my first trip to Tennessee and it reminded me a bit of Georgia but with more cowboy hats.

I made one tactical error and forgot my biking glove. While the folding cane might be easier for travelling, I think next time I’d do better the bring the S-cane- my right wrist is pretty miserable.

Oh- also I had my first-ever “swabbing” while passing through airport security, because my orthopedic shoe is mysterious. The lady was super-nice and it was over quickly.

The cats have forgiven us for being gone (after the liberal application of soft food) but the house needs to be vacuumed desperately. I see the podiatrist tomorrow and I’m really hoping for some good news. It still aches occasionally, but I’m hoping that I can move back to sneakers. I also get my ant venom test tomorrow, which I can’t really say that I’m looking forward to. In good news, I have a new book to read while I wait to see how much I swell up: Abraham Lincoln, Vampire Hunter. How could it fail?

(I have since learned that there is another fiction book where Lincoln himself is a vampire. I think the authors need to have a little sit-down. Maybe the second is a continuation of the first? Although it would imply that he wasn’t a very successful vampire hunter, unless he’s a vampire that hunts other vampires. I think I’m overthinking this a bit much.)

(Oh. Apparently there are dozens of books like this now. How… unimaginative.)

I am seriously considering an electric blanket for days when multiple places ache at once. Yes, I live in Florida and it is over 90F out. What’s your point?

Travel Priorities

It only took me 20 minutes to get my meds together for the weekend- that just might be a record:

The paperwork includes my emergency health summary page and the descriptions for all my prescriptions. The little cluster to the right is my OTC meds and assorted pillcases. The orange bottle holds all my vitamins and supplements. Those are things that if someone decides that they’re not safe and tosses them. then I can live without for a couple days or replace easily. To be honest, to me that doesn’t look like all that much- if I was going to be gone longer it would be a different story.

Packed to go:

This bag stays in my purse and with me at all times, along with our travel documents. I actually moved one or two pills into the cases to save space- this is the last trip this bag will take; it’s getting pretty ratty. This also prompted me to update my emergency info sheet- a few meds had changed. I save it in Google docs and share it with each doctor (or any doctor who is interested and web-savvy).

Update: Darn it- I knew that was too easy- I found a bottle that I missed. It’s like playing horizontal jenga squeezing anything else in there.

Oversleeping My Meds

One of the smallest things that can make a huge difference in my day is oversleeping my early morning meds.

In an ideal world, I go to bed at a reasonable time, have a decent night’s sleep, and wake up art 5:30 am to take my thyroid medication. Most days I manage to accomplish this even without the second criteria, but every once in a while my body clock doesn’t go off, and the whole day slowly slides off the rails.

I should start by saying that I don’t set an alarm for my early morning meds- if I did, not only would my husband make me sleep in the other room, but I probably wouldn’t get back to sleep afterwards, and that one hour of sleep in the morning is often the difference between whether I can drive myself to work or not (some days, whether I get to work at all).

I need to take my meds on an empty stomach and not eat for a full hour afterwards. Being late one day, or only waiting a half hour before eating, isn’t the end of the world. But 2-3 days of that sort of behaviour puts me in a pretty bad place- my thyroid is balanced, but only if I maintain my meds, so I’m as strict as I can be about them.

This means leaving for work without having eaten breakfast. Which means that I also haven’t taken my regular morning meds, since I need to take those with food. Usually I bring pills to work and buy a bagel and tea, but I’m missing my RA meds that take the edge off my morning stiffness and pain (which can also determine whether I can drive myself to work or not). The new car helps, since it is higher off the ground and easier to get in and out of if my hips/back are stiff and painful. However, it’s still a new car and I’d rather not drive it groggy until I am more used to it. (Speaking of, I have now driven it in the rain twice and discovered just how responsive it is when I suddenly realised that there was a turtle crossing the road in front of me. Thankfully there was no on in the right lane since the swerve was instinctual. I hope he got across okay before someone else came along; I have hope, since he was moving pretty fast, for a turtle.)

So, yes, this morning I woke at 6:20 and realised I hadn’t taken my meds. I use a weekly pill case to make absolutely sure whether I’ve taken that day’s pill or not, because I don’t always remember whether I actually did take since I’m usually not fully awake that early. I have staggered to bathroom, drunk a glass of water, and stumbled back to bed, all without taking my pill. Those are the best days.

Because it was already almost time to get up anyway, I didn’t go back to bed and instead read comics online, got dressed, and fed the cats. I brought my late-morning pills to work with a banana and now, two hours behind schedule, I am back on track for the day. I now get to obsess about why I overslept, since oversleeping is sometimes a sign that I’m fighting something off but the other symptoms haven’t become obvious yet. Since we are flying out to a family reunion tomorrow for a few days, I naturally do not want to be the least bit sick. I truly wish I could sleep later and then all would be less of an issue.

FDA Advisory Panel Recommends Approval of New RA Drug

Tofacitinib is part of an up-and-coming new class of disease-modifying drugs called JAK inhibitors.

A little about what that means:

Tofacitinib is part of a new class of drugs known as “JAK inhibitors” that block Janus-associated kinase, or JAK, pathways, which are involved in the body’s immune response. JAK inhibitors are expected to compete for sales with biologic agents such as adalimumab, or Humira, and etanercept, or Enbrel, which revolutionized the treatment of RA and other types of inflammatory arthritis when they hit the marketplace almost 15 years ago. Unlike biologics, which are made from large and complex engineered proteins and taken by injection or infusion, JAK inhibitors are small-molecule medications that would be taken orally, once or twice a day.

(No, I have no idea how to pronounce Tofacitinib.)

I’m very interested in this, not only because it’s a new approach to RA treatment, but also since I’m getting ready for (probably yet another change in my RA treatment. I am hoping, fervently, to avoid going back on chemo, so a biologic is a strong contender. I’ve come to the conclusion, however, that no matter how much research I do I only understand about 80% of drug information (I can read the side effects just fine however- brrr). I also like the idea of another oral dose rather than an injection- I’ve managed to avoid them so far but I’m running low on options.

One way or the other, this is a huge step forward in RA treatment, and it’s exciting to see a new approach becoming available.

May is Lupus Awareness Month!

Lupus isn’t a usual topic here. However, I learned a great deal about Lupus when we were searching for a diagnosis, and have come to know many amazing people who live with Lupus.

One you may have heard of is Christine Miserandino of “The Spoon Theory” fame! Her support site “But You Don’t Look Sick” was a huge help to me when I was first learning about autoimmune disease and building my support system. Anyone who identifies as a “spoonie” owes that recognition to her, and she continues to be active in raising Lupus awareness as well as supporting all spoonies, everywhere.

For more information about Lupus and Lupus Awareness Month, please visit The Lupus Foundation of America.