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.

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.

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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.

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?

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.

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.

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.

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.

I bought a Honda 2012 CRV and have decided that nothing is more harrowing than driving a new car home from the dealership. It will stay in the driveway until my auto insurance is updated. We got back from the dealership so late we called and rescheduled visiting my aunt until today, or else we’d have had four hours of traffic. We were both a bit wiped- so much paperwork! But I’m very, very happy.

So, my treatments have been yo-yo-ing lately. First we increased the dosage of the herbal anti-depressant I’m on and I had terrible stomach side effects. It took a couple of days to realise that was the cause (I was sick with something else at the same time, so I didn’t realise the meds were the cause). I cut it cold turkey and then eased back up to the lower dose, which seems to be fine. If I had any doubts about whether it was working before, however, then those are gone now- those few days without were pretty dark. I had to cancel my appointment with my therapist last week due to the car situation and now we’re playing phone tag- my next appointment isn’t until June but we can do a phone session if I need it, which is reassuring.

Then, my rheumatologist and I cut back my Naproxen dose due to heartburn and had my pain spike into my first serious flare in months. I’m now back on the full dose and we’re watching closely to see what happens. My stiffness and pain is pretty terrible, especially in my hands- I have resigned myself to invest in Tums stock. My previous rheumatologist did not include my rheumatoid factor test results in my lab copies when I changed doctors, so we re-ran that blood test and it came back negative. Rheumatoid doesn’t always show on the blood test and other factors are part of the diagnosis, but I was still surprised. My new doctor doesn’t think it changes my diagnosis, but she is keeping an open mind which manages to be both reassuring and anxiety-inducing at the same time.

My foot is doing fairly well, although Tuesday night I noticed that it was very swollen. I had gotten out of the habit of soaking my foot in ice water (because I HATE IT) but now I’m back to doing that again and the swelling is calming down. A little concerned that it’s still swelling so much though- I’m really hoping to be out of the orthopaedic shoe in a couple weeks. I found out recently that a few folks in the office had no idea that I had broken my foot- they figured it was “just my arthritis”. I admit to having mixed feeling about that- I want to say “I’m not THAT bad all the time, am I?!” I desperately want to feel improvement once my foot is healed- that no one could tell the difference is a bit discouraging.

Oh, and my cholesterol is creeping up again, which doesn’t surprise me in the least. If I manage to survive this broken foot I expect it to drop like a stone when I can start exercising again. *ihopeihopeihope*

I feel locked in stasis at the moment and frustrated that it seems like there isn’t anything that I can do to make myself better right now that I’m not already doing. I just have to wait and be patient, and that’s very, very hard. Add in a few poor nights of sleep and I’m barely civil.

What is EDS?

Individuals with EDS have a defect in their connective tissue, the tissue that provides support to many body parts such as the skin, muscles and ligaments. The fragile skin and unstable joints found in EDS are the result of faulty collagen. Collagen is a protein, which acts as a “glue” in the body, adding strength and elasticity to connective tissue.

Ehlers-Danlos syndrome (EDS) is a heterogeneous group of heritable connective tissue disorders, characterized by articular (joint) hypermobility, skin extensibility and tissue fragility. There are six major types of EDS. The different types of EDS are classified according to their manifestations of signs and symptoms. Each type of EDS is a distinct disorder that “runs true” in a family. This means that an individual with Vascular Type EDS will not have a child with Classical Type EDS.

What are the symptoms of EDS?

Clinical manifestations of EDS are most often joint and skin related and may include:

Joints: joint hypermobility; loose/unstable joints which are prone to frequent dislocations and/or subluxations; joint pain; hyperextensible joints (they move beyond the joint’s normal range); early onset of osteoarthritis.

Skin: soft velvety-like skin; variable skin hyper-extensibility; fragile skin that tears or bruises easily (bruising may be severe); severe scarring; slow and poor wound healing; development of molluscoid pseudo tumors (fleshy lesions associated with scars over pressure areas).

Miscellaneous/Less Common: chronic, early onset, debilitating musculoskeletal pain (usually associated with the Hypermobility Type); arterial/intestinal/uterine fragility or rupture (usually associated with the Vascular Type); Scoliosis at birth and scleral fragility (associated with the Kyphoscoliosis Type); poor muscle tone (associated with the Arthrochalasia Type); mitral valve prolapse; and gum disease.

What are the types of EDS?

There are six major types of EDS. The different types of EDS are classified according to the signs and symptoms that are manifested. Each type of EDS is a distinct disorder that “runs true” in a family. An individual with Vascular Type EDS will not have a child with Classical Type EDS. Learn more about the different types of EDS.

How is EDS diagnosed?

The categorization of the Ehlers-Danlos syndromes began in the late 1960s and was formalized in the Berlin nosology. Over time, it became apparent that the diagnostic criteria established and published in 1988 did not discriminate adequately between the different types of the Ehlers-Danlos syndrome or between the Ehlers-Danlos syndrome and other phenotypically related conditions. In 1997, a revised nosology was written in Villefranche that redefined the types of EDS. Learn more about the EDS nosology and how EDS is diagnosed.

How prevalent is EDS?

At this time, research statistics of EDS show the prevalence as 1 in 2,500 to 1 in 5,000. It is known to affect both males and females of all racial and ethnic backgrounds.

How is EDS inherited?

The two known inheritance patterns for EDS include autosomal dominant and autosomal recessive. Specifics regarding genetic inheritance may be found by following the link below. Regardless of the inheritance pattern, we have no choice in which genes we pass on to our children. Read more about hereditary patterns.

What is the prognosis of someone with EDS?

The prognosis of EDS depends on the specific type. Life expectancy can be shortened with the Vascular Type of EDS due to the possibility of organ and vessel rupture. Life expectancy is usually not affected in the other types.

What can I do now?

The defining trait of those affected by EDS is the search for information. The rise in Internet usage has delivered a significant benefit to families affected by EDS. EDNF members are sharing information on-line and learning from each other in ways that were impossible nogt very long ago. Visit EDNF’s Facebook page, the EDNF Inspire Online Community, or look through the various EDNF publications available through the EDS Guides menu on the left hand side of this page.

I personally know several wonderful people with various types and severties of EDS- this post is for them. <3