Yeah, I've Got That - So What

Sneak Peak

2008-12-30T16:52:00.004-06:00

I've been trying to catch up with my blog reading. . . yeah, it's going to take a while. . . Anyway, go over here to visit my favorite primal dude, Mark, and take a sneak peak his 'comprehensive diet, exercise and lifestyle book, The Primal Blueprint'. Mark's "Primal Blueprint" is the foundation for the eating and exercising habits that, *ahem*, have had such a tremendous impact on my life over the past nine months or so (temporary breakdown in primal living habits due to moving/stress/assorted pity parties are beside the point). Enjoy!

(I've been looking for an excuse to use this pic for a while. . .)

Better?

2008-12-30T07:57:00.007-06:00

We had a nice Christmas at the cabin; hiking and picture taking and most importantly, TOGETHER for the holiday (first set of pictures here).

I'm still struggling with keeping my attitude up; it comes and goes, but I'm doing better than I was Christmas Eve. I'm determined to suck it up and make it work here, at least for a couple of years, and re-evaluate then if I want. And I'm determined to get back on track with my eating and exercise habits; I know from experience food and exercise have a huge impact on my RA and my overall well being, both of which are in dire need a swift kick in the tush.

I hope everyone had a very Merry Christmas, and I hope everyone is looking forward to a safe and Happy New Year.

Merry Christmas

2008-12-24T08:15:00.010-06:00

OK, this is my place to come and bitch; if you want a nice, light Christmas poem, go to my other blog. If you're not able to deal with a downer today, read no further.

How did I start my Christmas Eve? I got up a little before 6 o'clock, started a pot of coffee, and then sat on the floor in the kitchen petting my dogs and bawling. Because I love the Holidays - the decorations, our family traditions - and I don't have a tree or a single strand of lights up and I'm not going to be 'home for the Holidays' this year; and because it's Christmas Eve and I had to get up early because they (might) be coming to bring my new washing machine this morning. I say might because they were supposed to have brought it Monday, and then Tuesday, so I'm not holding my breath for today. I haven't been able to do a single load of wash since I've moved here; it sure would be nice to have some clean clothes. And I was bawling because I woke up barely able to use my hands, and every joint hurts, and I'm tired.

Tired from coming to St. Louis and driving all around the area looking for a place to live (and, as it turns out, choosing the WRONG place). Tired from unexpectedly having only four days left to finish getting ready to move. Tired from driving here from Houston with my parents and dogs in tow, and then having to drive for the first time in ice and snow the very first day here. Tired from spending a week unpacking and unpacking and unpacking, so I could get all the stupid boxes OUT of here. Mentally and emotionally tired because there have been so many problems with my apartment, and with the move in general, and I feel like I made a huge mistake in deciding to take this job and move to St. Louis. Tired from doing it all with increasing joint pain every day. Mentally and emotionally tired from trying to force my mood up every day, and not give in to the lurking negativity. Tired because underneath it all, fatigue is so much part of having RA that it's hard to remember what it feels like to not be tired all the time.

And I haven't even started the new job yet.

Yes, I'm having a nice little pity party. I feel awful about it, since my parents have gone to the trouble of finding a cabin just an hour away from St. Louis, and are driving all the way back here, after driving home to Houston just last week, so I don't have to drive back to Houston for Christmas. They're in a hotel this morning, hoping the falling temps and earlier rain here in Missouri don't create dangerous driving for the last leg of their trip to the cabin. They've got troubles of their own, but they've made a huge effort to make this Christmas nice.

I'm sure I'll work myself into a better attitude before long, but I decided I needed to take a time out and just let it all hang out there.

And "That's all I have to say about that", since my hands won't type another word, and I need to pack for the cabin. . .

Uncle!

2008-12-11T06:31:00.003-06:00

Chaos and madness prevails!! I went to St. Louis last week - found a two bedroom apartment in a nice, safe neighborhood. Relatively close to work and with plenty of sidewalks for dog walking. It was literally the last property I looked at - the 14th. I came back to Houston pooped, but. . . the moving company is coming on Friday (three days earlier than I had planned - it's a long story) to pack and load my stuff. Aaaaargh!!! So much to do, so little time! I know it would be overwhelming regardless, but we all know that RA adds an extra element of 'hard'. . .

One more day left to get everything ready. . .

Happy Thanksgiving!

2008-11-27T07:45:00.004-06:00

Happy Thanksgiving to all! I hope everyone can spend the holiday doing whatever makes you most happy, and most thankful.

I will get back to blogging soon (I hope); I'm getting ready for my 'big move' to St. Louis, Missouri.

In the mean time, I've been reading a very interesting book, The Autoimmune Epidemic by Donna Jackson Nakazawa which I highly recommend to everyone with an autoimmune disease (and really everyone else).

I Got An Offer

2008-11-04T07:30:00.003-06:00

. . . in St. Louis (Hazelwood) Missouri. Decision time. Anybody out there reading this from the St. Louis area?

Oooops - Ouch!

2008-10-29T08:02:00.005-05:00

So yesterday I went to the nature preserve with my dogs for a hike. It was nice and cool and the humidity was low, so after we finished the two mile loop, we were all up for a bit more. Other times that I have felt like doing more than a single loop, we have continued on around and done another partial loop, and a couple of times I've investigated some of the side trails - mostly moutain bike trails. Yesterday, I decided to investigate some mountain bike trails that we hadn't tried before.

D'oh! The trail we took was on the interior of the two mile loop, so you would think there was a limit to the amount of ground that could be covered. . . and you would be wrong! I have no idea how far we ended up walking before we finally popped out of the woods onto a trail I recognized, but I know that it takes us about 45 minutes, give or take, to walk the two mile loop, and our little side trip took about an hour and 15 minutes.

The whole time, I knew I wasn't lost per se, since I knew I was on the interior of the two mile loop, but after a while, I wondered how far we had to go before we got 'out'. And I felt pretty stupid. I kept thinking, 'What have I gotten us into!?!' Needless to say, after a while, it was NOT a pleasant hike anymore! Besides knees and hips that started telling me I was overdoing it, both the ball and heel of one foot really started hurting. BAD! And my dogs were visibly CRAWLING with TICKS!!! Gross!

So, our two mile walk, plus just a 'little' bit more, became a 2 1/2 hour 'adventure'. This moring, my foot is still sore and swollen, although much, much better than it was yesterday (it really stiffened up on the drive home, and I couldn't put any weight on it for most of the rest of the day. I hope I haven't triggered and already RA affected joint into a new phase!) And I pulled litterally more than two dozen ticks off my dogs (and three from myself). None of them, thank goodness, attached. And then I doused them with both a homemade herbal flea/tick repellent and Adams flea and tick spray (I was desperate; I hate to use chemicals like that on my dogs!).

Talk about biting off more than you can chew!

Update

2008-10-24T09:00:00.002-05:00

Sorry I've been such a poor blogger lately. I had an interview in St. Louis on Tuesday. This interview went (or at least felt) much better than the interview in Kansas City. Coincidentally, I FINALLY got an e-mail, Tuesday afternoon no less, from the HR recruiter for the KC job. "Thank you for your interest, but get lost". I joke, but that's how that kind of e-mails always seem to me.

I have mixed emotions about the job in St. Louis. I liked all of the people I interviewed with quite a bit, and felt much more comfortable with them than with any of the people I interviewed with in KC. While still a large, stable company, the actual group I would work in is nice and small. On the other hand, Kansas City seemed like a safe move, since most of my extended family live in the greater Kansas City area, and I don't know a soul in St. Louis. . . And, salary never came up in the St. Louis interview. . . So I'll just have to wait and see and keep on job hunting.

My insurance situation is still a mess, but looking up. . . sort of. I went around and around with the insurance company and the Accounting Officer at my old company, and finally things were settled with a termination date of September 1 and I just needed to wait a couple of days for the termination to make it's way through the system at UniCare to get my Certificate of Credible Coverage to send off with my application for the Texas Risk Pool. But then, my old company decided to try and come up with the money to keep their group insurance plan. They sent the payment for the month of September, but because it was late, UniCare wouldn't reinstate the policy until they received the payment for October, which was supposed to have been overnighted on Wednesday. I'm going to call the Accounting Officer today to find out where things stand. I really need to refill my prescriptions this weekend. Fingers crossed. Fingers also crossed that everything works out so that I can get KOBRA through Unicare instead of applying with the Texas Risk Pool!

Physically, I'm doing surprisingly well. I'm at my worst, of course, first thing in the morning. My hands are pretty bad in the morning, and I'm having trouble with little things, like opening things and grasping things (I had a little incident this morning; thank goodness my coffee mug was empty and landed on the kitchen rug and didn't break!). But, within a few hours everything feels better, and I generally feel pretty good for the rest of the day.

I've been able to really kick up my exercise since I've been laid off by adding some hiking to my strength training and sprints. I've been taking my dogs to the George Mitchell Nature Preserve two or three times a week. We love the place! Since I'm going on weekday mornings, we usually have the place to ourselves. It's quiet and beautiful and peaceful. I feel like I'm not only getting some good exercise, I'm also getting a chance to recharge my soul.

My diet hasn't been quite as Primal as it could be the past couple of weeks. I originally changed my diet to reduce overall systemic inflammation, and to eliminate possible autoimmune responses to grains in my diet. I was religiously strict with my diet for months, but I've loosened up the past couple of months, and it's been a slippery slope. Of course, no time like the present to get back on the 'wagon'!

While I generally feel like I have been doing better physically the past few weeks, I do not necessarily think that my RA is stable. My hands and feet seem to be getting worse than they were a couple of months ago. But, I haven't had any days recently where I hurt bad ALL OVER, ALL day, and I was having quite a few of those kind of days just a month ago. I don't know how much influence diet, exercise, Enbrel, and stress are having on the status of my RA right now. I've always wondered if the stress at work (a long, long story culminating with the big lay-off) was a huge contributing factor in how poorly I had been doing. On the other hand, being laid off is definitely NOT a stress free condition, leaving diet, exercise, and Enbrel.

As all of you that have rheumatoid arthritis know, sometimes it feels like a crap shoot with what works and what doesn't work. No choice but to take the good with the bad, and hope that at the end of the day, week, month, year there is more good than bad; in our disease, and in life.

Vacation Pictures

2008-10-19T14:37:00.002-05:00

Go here.

Don't Get Sick, Don't Lose Your Job

2008-10-06T13:35:00.007-05:00

'Don't get sick' has become kind of snarky catch phrase for me, something I jokingly say in response to some of the annoying, aggravating, bewildering events that are par for the course if you have a chronic illness. The joke, of course, is that you don't have a choice; while 'don't get sick' is good advice, well. . .

I think I've got a new one. 'Don't lose your job'. Or, if you are going to lose your job, make sure that the company you work(ed) for isn't going to discontinue their group insurance plan. Or, at least make sure they actually terminate the group insurance in an organized way. Ahem.

When you are laid off, and your previous employer no longer has a group insurance plan, you can't get COBRA. If you have a chronic/autoimmune disease, you can't get an individual insurance policy, because no company will touch you with a ten-foot pole. Or, they will give you a plan, but will not cover the chronic/autoimmune disease (which really defeats the purpose of having an insurance plan, if you have a chronic/autoimmune disease, right?). In Texas, there is a state risk pool that you can get insurance through but, of course, it is very expensive. And, you need to apply. The risk pool's insurance plan won't cover a preexisting condition without proof of previous continuous coverage, which you must provide at the time of application. Your application must be accepted within 60 days of the termination of your previous plan, or you will have a 'gap' in your coverage, causing them to be able to deny coverage of any preexisting conditions for up to a year. Are you following me?

My (previous) employer was in their thirty day grace period (ie were already thirty days late on their bill) with our insurance carrier when they let us go ('us' being the entire science team, which is a real hoot, considering it is (was?) a science company). The thirty day grace period was up on the 30th. So I called on the 1st to request a certificate of continuous coverage to submit with my application to the Texas risk pool. But. According to the insurance company, I'm still 'covered', so they cannot issue a certificate of coverage. Bottom line, when I called the accounting officer with my company, was that their 'plan' was to just let the coverage lapse due to nonpayment. Because I was getting stuck between a rock and a hard place, she agreed to call the insurance company to formally terminate our policy. Nonetheless. It will take 5 to 7 working days for the termination to show up in their system. However. Our policy might be terminated earlier in the system due to nonpayment. So. At this point, I am calling the insurance company daily, waiting for the magical day that their computer system shows that I no longer have coverage, so I can apply with the Texas risk pool. Meanwhile, the clock ticks on my 60 day deadline. Ridiculous? Infuriating? You bet 'ya!

Also, let me briefly mention that it takes a least a month from the time of your application to recieve your first payment from unemployment (assuming you qualify), and that unemployment benifits are at most half of your salary. On the other hand, half a loaf of bread is soooo much better than. . . nothing.

My advice? Don't get sick, and don't lose your job! 'Nuff said!

A Heaping Helping of Stress

2008-09-24T15:19:00.001-05:00

I've been laid off. Go to my other blog for a bit more information. I promise to start blogging separately on my two blogs again soon. . .

Preparing for Ike

2008-09-12T11:57:00.001-05:00

Go to my other blog for hurricane updates (at least until the power goes out!).

Go Away Ike!

2008-09-11T09:33:00.005-05:00

Keep your fingers crossed for all of us in the coastal Texas area; we are expecting hurricane force winds as far north as my neck of the woods. What makes this situation so much more fun? My birthday is tomorrow! Between 9/11 and hurricane Ike, I may come to fear my own birthday! :)

We had a great trip to the Frio and I have tons of photos, which I will post to my other blog when I can. . .

I will let y'all know how we are faring when I am able.

Good-Bye Cruel World

2008-09-03T17:04:00.001-05:00

Geez, I hope I didn't scare 'ya!

I know I haven't been posting much lately. Honestly, I've been trying to think as little as possible the last couple of weeks. My work situation has become absolutely intolerable; we're still not getting paid regularly or on time, our chief scientific officer is suing our old CEO, and our old CEO is suing him right back, the old CEO is gone, although 'officially' and legally he is still the chief executive officer, however, they've brought in a 'new' CEO as of today (who really isn't new, she was the CEO of the company that the current company bought out four years ago, if that makes any sense) and her very first action was to have a meeting and explain that she will be evaluating and interviewing everyone individually, and some of us may not have jobs when she finishes, and she couldn't say when the funds will come in for our (already late) pay, and anyone that has a problem with that should probably look elsewhere for employment. Oh believe me, honey, I'm all over that! On top of that, to save money, they're going to sublease about half of our office/lab space. I can't begin to imagine how that is going to work, since we're using every bit of space we already have.

In a nut shell, my life is oh so stressful right now, so I've been trying not to think about any of it much, and just do what I need to do. And hopefully, I won't waste any brain space thinking about any of it this weekend while I'm in the hill country/at the river, either. We're leaving tomorrow morning for a long weekend of fun, sun, hiking, bird watching, river tubing, raft floating, reading good books, watching the stars, and above all, RELAXATION! (Take that, crazy new CEO lady!)

More On Fasting

2008-08-20T09:29:00.006-05:00

Peter over at Hyperlipid has an excellent post up, specifically about fasting and rheumatoid arthritis. Go. Read.

After the particularly awful day I had yesterday, which included leaving work at noon and spending the rest of the afternoon wrapped neck to toes in a heated blanket cranked to high (with the air conditioner blasting away and the ceiling fan on; as you can imagine, my dogs deserted me to find cooler places for their afternoon nap), I'm ready to give fasting another try. I'm not starting today, since, to complete my pity party yesterday, I stopped at a local mom and pop candy store on my way home for some of their lovely, lovely, made from scratch fudge. I figure that starting a fast on the heals of dumping large quantities of sugar into my system (particularly after avoiding the stuff for months now) is surely a recipe for failure.

Now, to decide on the length of fast and the frequency. I am quite tempted by a seven(ish) day fast, as was used in the research article Peter referenced. I am looking forward to a long awaited vacation the first weekend in September, and it would be truly lovely to NOT feel this cruddy while on vacay.

Update: Scott at Modern Forager continues with part 4 of his series on fasting.

An IFy Situation

2008-08-18T09:55:00.009-05:00

I can't remember if I linked to this fasting study in the past, although I remember reading it. That study generated my initial interest in intermittent fasting, or IF. Shortly after switching to a grain free/sugar free diet, I tried intermittent fasting for about a month and a half; a 24 hour fast, one day a week.

Scott over at Modern Forager has a multi-part series of posts about intermittent fasting; part 3 in particular addresses the effects of fasting on inflammation. Oh, are you interested now? Here's an interesting quote from a (very) small study of the benefits derived from fasting.

"Since May 2003 we have experimented with alternate day calorie restriction [Note: It wasn't even true alternate day fasting.], one day consuming 20–50% of estimated daily caloric requirement and the next day ad lib eating, and have observed health benefits starting in as little as two weeks, in insulin resistance, asthma, seasonal allergies, infectious diseases of viral, bacterial and fungal origin (viral URI, recurrent bacterial tonsillitis, chronic sinusitis, periodontal disease), autoimmune disorder (rheumatoid arthritis), osteoarthritis, symptoms due to CNS inflammatory lesions (Tourette’s, Meniere’s) cardiac arrhythmias (PVCs, atrial fibrillation), menopause related hot flashes."

So, what are my personal experiences with fasting? My mom, who has been doing the RA dance (or should I say, the RA shuffle?) for almost 20 years now, swears by fasting and/or severe calorie restriction in reducing joint pain. I didn't have ANY noticeable change in joint pain over the month or so that I practiced one, 24 hour fast per week. On the other hand, 24 hours once a week for a little over a month may have not been enough to make 'dramatic' differences MY joint pain, and I certainly wasn't monitoring my blood work through that period of time, so it's possible that I was getting physiological benefits that were too subtle to be noticeable, and that may, in fact, have eventually improved my joint pain over a longer period of time.

Oh, and I didn't actually find 24 hour fasting (dinner to dinner) nearly as difficult (with a few exceptions) as I expected it to be. I think it helped, a lot, eating grain free/sugar free, so I didn't have any blood sugar crashes, and the accompanying shakes and brain fog. I got hungry, yes, but I didn't loose energy or my ability to concentrate.

In any case, I'm considering trying IF again, and maybe increase it to two 24 hour fasts a week. It certainly was nice not to have to worry about preparing breakfast and lunch to take to work on the days that I fasted. . .

Magic Bullet

2008-08-12T13:42:00.005-05:00

Raise your paw if you have done this (or, like me, continue to do this)?

'This' being attributing a really bad day of joint pain (or a really good day) to - the full moon, the new moon, something you ate and/or drank, something you didn't eat and/or drink, the weather (it started raining, it stopped raining, a cold front came through, a low settled in), a pair of shoes, getting up early, getting up late, going to bed early the night before, going to bed late the night before, it being a work day, it being a weekend day, exercising the previous day, not exercising the previous day (or the particular form of exercise you did), a higher dose of fish oil, a higher (or lower) dose of vitamin D (or E, or any in the alphabet), spending time in the sun and getting natural vitamin D, forgetting to make the proper sacrifices to the gods of autoimmune disease. . .

Hmmm? Anyone? Bueller? Bueller?

Maddening dis-ease, isn't it!?!?

News You Can Use

2008-08-08T14:22:00.002-05:00

From an article at the Modern Forager.

"Grains cause a degree of low-level inflammation and gut irritation in nearly everyone and are a key player in leaky gut syndrome. Leaky gut syndrome occurs when the digestive tract begins letting large food particles through its lining into the bloodstream. As these food particles are seen by the body as foreign invaders, antibodies are created. Unfortunately, the human body is made of protein(s) and fatty acids and many of these invaders resemble our own tissues. As the body begins attacking the invaders, it inevitably attacks some of its own tissues that are similar to the invaders, resulting in autoimmune disorders such as lupus and rheumatoid arthritis."

The concept of 'leaky gut syndrome' lies somewhere between conventional and alternative medicine. Apparently, most conventional physicians think it's a bunch of BS, while many alternative medicine practitioners beleive leaky gut is the formative problem for many, many conditions.

Some food for thought, pun intended.

New Link

2008-08-06T08:42:00.005-05:00

A few days ago I got the below comment on one of my posts. I've looked around on the GeneRAtions web site very briefly (doG, give me just a few more hours in everyday!) and there appears to be some valuable information on the site and I like that someone is taking an interest in the impact RA has physically, emotionally, on the family, at work (if you've got RA, I don't need to go on) and that one of the stated goals is education of the public about RA. Maybe, some day, if the general public becomes better educated about RA, I could change the name on my blog. However, when you visit the site, remember caveat emptor. The site is supported by Centocor, the makers of Remicade (infliximab). On the other hand, in my brief look around the site, I couldn't find any advertising for Remicade. . . In any case, I've added a new link for GeneRAtions under RA Links.

I’m writing to share a new website/program just recently launched, which I thought may be of interest to you based on your blog focus and content – GeneRAtions

(http://www.ragenerations.com/).

GeneRAtions features the results of two surveys that have uncovered several telling insights about rheumatoid arthritis (RA) from the perspectives of people living with the disease and physicians treating the disease. For example, one statistic found that people with RA feel sad or depressed an average of nearly one month out of three months; nearly one-third of the time.

Our hope is that these findings and this program offer new perspectives that will help communicate the severity of RA and lead to a better understanding of this complex disease within the patient and physician communities, and importantly the general public.

You can read more about the program on our blog at CNTO411. Please feel free to link to this post and let us know what you think.

Best Regards,

BrianBrian Kenney

Centocor, Inc.

Corporate Communications

Chill, Dude

2008-07-24T14:53:00.004-05:00

Yet again, a good post and good information from Mark's Daily Apple. And here's a link the to study itself. And here's a link to a Science Daily article about the study. As Mark indicates, the 'relaxation response', or "the state of “deep rest” is characterized by “decreased oxygen consumption, increased exhaled nitric oxide, and reduced psychological distress.” The study authors found that RR, as it’s commonly referred to, has been “clinically effective” in treating the symptoms of disorders as varied as cardiovascular disease, autoimmune dysfunction, inflammatory conditions, and chronic pain."

The Science Daily article goes on to say that, "the study indicated that the relaxation response alters the expression of genes involved with processes such as inflammation, programmed cell death and how the body handles free radicals," and that the relaxation response could "help patients deal with disorders ranging from high blood pressure, to pain syndromes, to infertility, to rheumatoid arthritis"!

Additionally, the study authors found that a variety of methods used to achieve a state of deep rest, such as "forms of meditation, repetitive prayer, yoga, tai chi, breathing exercises, progressive muscle relaxation, biofeedback, [and] guided imagery" are apparently equally effective.

I was already well aware that I need to learn to 'chill', but maybe it's time to take the whole thing a bit more seriously. . .

Chillin'. Doin' it Doggie Style. . .

Links and A New Plan

2008-07-21T09:19:00.009-05:00

First, I've added a list of links to fellow RA bloggers. Good stuff. Go. Read.

Second, my appointment with my rheumatologist left me in a bit a funk for a couple of days.

My appointment was for 3:15, and I wasn't even called back from the waiting room until 4:20, and didn't see my RD until about 4:45. Grrrr! The first real indication that the appointment wasn't going to go to well (other than her running soooo behind), was when she walked in with a big smile and said 'How's that Arava workin' for you?' Ummm, yeah, I was in two days ago with exhaustion, chest pains and a racing heart. . . And the appointment went down hill from there.

On the one hand, I essentially got what I wanted from the appointment, which was to continue with Enbrel, lodine, and pain meds (the meds I have been on for the past year), without trying to add a second DMARD, at least for the next few months. In my opinion, my body needs some time to recover from the Arava assault. And that's what I told my RD. In essence, she agreed with me. But, I think she is frustrated with me becausse I am not responding to treatment and I have quit both methatrexate and Arava due to side effects, and I think she's just mentally thrown her hands up. When I asked her when she wanted to see me next, she said 'Oh, three or four months', but she said it like, 'Oh, whenever, it doesn't really matter.' I was near tears when I left her office.

Yeah, last week was a doozy, plus I missed a lot of work, which always worries me. So I was in a bit of a funk for several days. But then I had a thought. One day at a time, why don't I act 'as if'? The basic idea sprouted from Mark's act 'as if' Primal health challenge. Except I'm not shooting for 30 days, I'm going to take it one day at a time. And my goal is to act 'as if' I FEEL GOOD!

Sounds stupid in some ways, I realize. On the other hand, I've spent more and more of my mental energy over the past couple of years noticing every little new lump or redness or swelling, and noticing every change in function, and taking mental note of every increase or spread of pain and kept track of every little bodily change that could indicate a side effect from medications. Especially over the last handful of months, my entire life has become centered around my RA; I've barely even posted the last few months on my other blog! At least mentally, I feel like I've become that little old lady, with nothing to talk about but all the medications I'm on and all the things physically wrong with me. OK, maybe not to that extreme, but really, enough already!

Don't get me wrong, I have no intention of creating a sense of denial. But I AM going to act 'as if' I feel good, just for today, one day at a time, and do what I can to live and enjoy life every day. I'm going to stop wasting so much mental energy on this disease. It is what it is, and worrying about it constantly is not going to change anything. In fact, worrying about it and focusing on it constantly just increases the stress of living with RA, and living with this disease is hard enough.

So, that's the plan, act 'as if' I feel good, one day at a time. And that's what I did this weekend; and I had a pretty nice weekend. I got quite a few things done, and had some fun too!

Merry Go 'Round

2008-07-16T16:14:00.005-05:00

I went to see a PA in my RD's office yesterday (since my RD is on vacation). I decided I was feeling too unusually awful. I had an EKG and they checked my blood oxygen levels. I was a little tachycardic and my oxygen levels were a little low. So things were a little off, but not 911 off. I'm off Arava and my RD will be back in town tomorrow and I have an appointment with her in the afternoon. . .

The only good news is that I've lost 10 pounds since the last time I was in (about 2 1/2 months ago). Yay! Yup, I'm still gettin' Primal!

RA Sucks!

2008-07-14T08:55:00.004-05:00

I know I'm preaching to the choir here, but I've just got to vent.

I had a horrible weekend! I get so mad when my weekends are 'stolen' by RA! Yesterday was the worst; I was having horrible, paralyzing, fatigue and joint pain, and some chest pain that started scaring the sh!t out of me, even though I realistically realize that I've had chest pain before and I think it is RA in my sternum. My appetite has also totally disappeared and food is totally yucky (Arava?) and I only had a few bites of food all day. So I got nothing done to get ready for the work week, and ended up with very little sleep, since, even though I felt exhausted, I couldn't sleep.

I convinced myself last night to go ahead and get up and come into work, but take a half personal day. Since I'm in management, the CEO has to approve any time off request. Yes, he approved it, but he was like 'Why are you limping again? Did you hurt yourself this weekend?' Duh! Dude, you know I've got RA! I walk like this 90% of the time now! It's just another day in my life and yes, I'm embarrassed that I walk like this! No, there's nothing wrong with my foot (actually, there is something wrong. . . with both of my feet, and also my ankles and knees and hips, and be grateful that I don't walk on my hands, since I would be in an f-ing wheel chair if that was the case!) Also, I would be ever so grateful if you could do your job and I wouldn't have to worry about whether I'm going to get a pay check tomorrow, and if I will still have medical insurance at the first of next month. And while you're at it, take a little control around here and put a lid on all the drama, game playing, and backstabbing going on here every damn day! Aaargh!!

Obviously Arava is NOT helping, if not adding to the load by causing diarrhea every day. I skipped my dose last night because I was feeling so awful I was afraid I had an infection or serious side effect going on. My next appointment with my RD is on the 29th, and I really don't want to move up my appointment, since it's just a couple of weeks away and I wonder what she can really do anyway. Offer me another drug instead of Arava? Substitute some other toxic substance for the one I'm currently on?

I'm so frustrated, so stressed, and so scared. And so p!issed that I'm taking a 1/2 day off not to go do something fun, but to go home and try to get caught up on all the things that didn't get done this weekend, so that I can at least be semi-prepared for the rest of the work week even though I'm still exhausted and hurting today and I'd rather go home and go to bed. This disease sucks!!

OUCH!

2008-07-07T14:27:00.005-05:00

I've got a lot of visible veins close to the surface on my thighs, I guess from years of different forms of exercise, and I always avoid those when I do my weekly Enbrel injection. Bu-ut, this weekend I really nailed one. I know I've nicked veins from time to time, because it hurts more and there is more bleeding; this time I think I actually injected right into a vein. Before the injection was even finished the area was starting to bruise and swell, and I bled like a stuck pig. Now I've got this huge, lovely bruise on my thigh that follows the outline of the vein for a couple of inches . Ick!

Arava - Two Weeks, Two Days

2008-06-30T10:11:00.004-05:00

Well, so far no difference in pain/swelling. In fact, I've been doing quite awful lately; an extra large dose of stress surely isn't helping. Unfortunately, I'm starting to have some side effects. Diarrhea every morning (although, knock on wood, so far only in the morning), and some slight, background level nausea that so far isn't really affecting my appetite, per-se. The diarrhea is really frustrating, since I've spent most of my life dealing with chronic diarrhea, and then, when I started the grain free/sugar free diet a couple of months ago, I finally had 'normal' digestion. Grrrr! I also think I might be urinating more frequently.

Speaking of 'the diet', I'm sticking with it, although I had a major fall from the wagon yesterday. Unfortunately, due to Arava, I have lost one of the major benefits I was getting from the diet, but happily, I am continuing to loose weight and gain muscle, which has got to directly, and indirectly, help my joints (woo hoo!).

You know, there are so many crappy things about having a chronic disease. There doesn't seem to be any one area of your life left uneffected. My company is in a financial crisis. We haven't recieved a paycheck since May 30 (and the one before that was late). We are teetering on the brink of having our insurance canceled, since the company hasn't been able to pay them either. Not only would losing my insurance make getting all of my prescriptions impossible (without insurance, my monthly rx bill would be about $2,000), but I would probably also get hit with a pre-existing condition if I had a break in insurance coverage. Did I mention that I've been experiencing some stress?

I was realatively healthy when I started this job, and had earned my 'place' before RA poked it's nose in and I started using up all of my sick days and many of my vacation days because of pain and fatigue. The idea of finding employment elsewhere? Starting a new job is complicated enough; when you add a chronic illness, particularly if that illness is not (yet?) under control? Gaaaah! While I'm sure Gabriele could shed some light on starting a new job with RA, the very thought of trying to earn my place with a new company is enough to give me fits!

Yeah, I'm in a bit of a 'mood' right now.

The Gorilla in Your House

2008-06-23T10:04:00.005-05:00

Wow, every bit as good as Spoons. . .

From Mary, in the UK.

The Gorilla In Your House

With thanks to everyone over at Ouch.

Acquiring a disability is a bit like getting home to find there's a gorilla in your house. You contact the approved and official channels to get rid of infestations of wild animals (in this case, the NHS) and they umm and aah and suck air in through their teeth before saying something roughly equivalent to "what you've got 'ere, mate, is a gorilla, and there ain't really a lot what we can do about them, see..." before sending you back home to the gorilla's waiting arms.

The gorilla in your house will cause problems in every part of your life. Your spouse may decide that (s)he can't deal with the gorilla, and leave. Your boss may get upset that you've brought the gorilla to work with you and it's disrupting your colleagues, who don't know how to deal with gorillas. You're arriving for work wearing a suit the gorilla has slept on. Some days you don't turn up at all because at the last minute, the gorilla has decided to barricade you into the bathroom or sit on you so you can't get out of bed. Your friends will get cheesed off because when you see them - which isn't often, because they don't want to come to your house for fear of the gorilla and the gorilla won't always let you out - your only topic of conversation is this darn gorilla and the devastation it is causing.

There are three major approaches to the gorilla in your house.

One is to ignore it and hope it goes away. This is unlikely to work. A 300-lb gorilla will sleep where he likes, and if that's on top of you, it will have an effect on you.

Another is to try and force the gorilla out, wrestling constantly with it, spending all your time fighting it. This is often a losing battle. Some choose to give all their money to people who will come and wave crystals at the gorilla, from a safe distance of course. This also tends to be a losing battle. However, every so often, one in a hundred gorillas will get bored and wander off. The crystal-wavers and gorilla-wrestlers will claim victory, and tell the media that it's a massive breakthrough in gorilla-control, and that the 99 other gorilla-wrestlers just aren't doing it right due to sloppy thinking or lack of committment. The 99 other gorilla-wrestlers won't have the time or energy to argue.

I have known people spend the best years of their life and tens of thousands of pounds trying to force their gorillas to go away. The tragedy is that even if it does wander off for a while, they won't get their pre-gorilla lives back. They'll be older, skint, exhausted, and constantly afraid that the gorilla may well come back.

The third way to deal with the gorilla in your house is to accept it, tame it, and make it part of your life. Figure out a way to calm your gorilla down. Teach it how to sit still until you are able to take it places with you without it making a scene. Find out how to equip your home with gorilla-friendly furnishings and appliances. Negotiate with your boss about ways to accomodate, or even make use of, your gorilla. Meet other people who live with gorillas and enjoy having something in common, and share gorilla-taming tips.

People get really upset about this and throw around accusations of "giving up" and "not even trying". They even suggest that you enjoy having a gorilla around because of the attention it gets you (while ignoring the massive pile of steaming gorilla-turds in your bedroom every morning and night, not to mention your weekly bill for bananas). The best way to deal with these people is to smile and remind yourself that one day, they too will have a gorilla in their house.

What Are YOU Going to Do With Your Dash?

2008-06-23T08:33:00.010-05:00

Last week, driving in to work, I heard a very good story on the radio that I've just got to share. I'm not the world's best story teller, so be patient with me. . .

A man told about how, as a young man, his father had taken him to his grandfather's grave site. His father told him to look at the headstone and tell him what the most important thing on the stone was. The man looked at the stone and saw his grandfather's name, date of birth, and date of death. Finally, he gave up and told his father he didn't know. His father pointed to the dash in between the date of birth and date of death. The father told the young man that that was the most important thing on the head stone, the dash. And then the father asked him 'What are you going to do with YOUR dash?'

Week One, Arava

2008-06-20T10:08:00.004-05:00

Weeeell. . . Honestly, I can't tell I'm taking it. Which is GOOD, since it means I'm not having any noticeable side effects. And the rx insert indicates that it could take up to four weeks for any improvements in symptoms, so I'm trying to be patient since I feel just as sh!tty this week as last week. Considering how sick methotrexate made me, I have to consider Arava an improvement over mtx in that regard. I'm still worried about long term use of Arava, but for the time being, that worry is taking a back seat to my concerns about progression of my RA and the need to prevent joint damage.

TGIF!

Arava, Day Two

2008-06-16T16:11:00.004-05:00

Well, I finally did it; I started Arava Saturday. While I hate to go into bodily functions. . . I spent a LOT of time in the restroom yesterday. Actually, I was fine in the morning and things got worse and WORSE into the afternoon, and then cut off, period, by around five o'clock. I also had some really strange bone pain in my eyebrows and jaw/chin. Yeah, odddddddd. Needless to say, I was a bit worried about making it through work today, but the work day is almost over and I've been just FINE. Weird. Maybe it was something I ate yesterday?

Also, yesterday morning, and really all day yesterday, I had truly exquisite pain (thank you doG for some chemically assisted pain relief!). Today, other than typical morning pain doodah, I've been doing pretty darn good.

It WILL Get Better

2008-06-11T09:59:00.006-05:00

At least that's what I tell myself over and over in the morning. About 80% of the time, no matter how much I hurt when I first roll out of bed, I feel much better by 8:30 or 9 'o clock. Not all better, but much better, and the day is doable. So every morning I tell myself again and again that it WILL get better, and I CAN handle the day ahead.

An Experiment of One

2008-06-08T07:30:00.013-05:00

Well, it's been a little over a month (I think, I really haven't been keeping track) and here are my observations about eating raw plus fish, low carb, no processed, no grains, no sugar, primal, paleo, high protein/high fat, what have you.

First, where I was at when I was diagnosed with RA. To make a long story short, at that time I had pain in most of my large joints and stiffness in my hands and feet and couldn't eat anything during the day at work, because as soon as I ate anything, I had explosive diarrhea within about 15 minutes. I was poked, prodded and scoped inside and out. All this testing, by the RD and a gastro, indicated I was negative for celiac (no antibodies) and crohn's (no lesions in my gut), and have diverticulosis. The gastro prescribed a medication (which I stopped taking after about a week, because it gave me blurred vision) and a high fiber diet, particularly the breakfast cereals with high fiber (which I also stopped after a couple of weeks, since it seemed to make the diarrhea worse). And, after the other possibilities had been ruled out, my rheumatologist gave me an 'official' diagnosis of rheumatoid arthritis and started me on prescription anti-inflammatories, and methotrexate (since my insurance required I try mtx before approving Enbrel). After two horrible months on mtx, my insurance finally approved Enbrel and I quit the mtx.

Which takes me to a couple months ago. I'd been using prescription anti-inflammatories and Enbrel and pain meds for about 9 months continuously. My 'digestion', while not exactly 'normal', was at least controlled, but all of my knuckles and many of my finger joints had become red and swollen since I had started treatment and I was having more and more 'bad' days and fewer and fewer 'good' days. So the RD added Arava to my drug list. I filled the prescription, but after searching around on the internet, I found not only a long list of side effects and that the drug would stay in my system up to two years without 'clearing' it with another chemical treatment, but also that many people didn't seem to have much relief of symptoms with this med (why didn't my RD discuss any of this with me?) I couldn't bring myself to start taking it.

Now, a couple of years ago I started researching a better diet for my dogs. They both have (or had) various health problems that I won't go into here, but the bottom line is that I thought better nutrition would help. Today, they eat a raw, dehydrated diet, rotated so that they never eat the same thing two meals in a row, with added meats, fruits and vegetables from the grocery store. I also supplement with fish oil (the same stuff I take), a joint supplement and probiotics/dietary enzymes. For me, it all came down to less processed and more whole foods in their diet. Their new diet also made me take a hard look at what goes in my mouth.

Long story short, changing my dogs' diet, coincidental discoveries about gluten and sugar and insulin and immune response and inflammation, and a desperate desire to avoid taking toxic chemicals, evolved into the 'diet' I started a little over a month ago (and big thanks to the information found primarily at two places, Hyperlipid and Mark's Daily Apple. See the links under 'Good Eats').

With two notable exceptions, which I will address in a minute, I've been eating lots of fresh, raw or lightly cook vegetables, fish, eggs, some poultry, and fresh berries. No grains, no processed sugar. As Peter over at Hyperlipid would say, I've been restricting my diet to FOOD! While overall I feel better and more energetic and more fit, and I'm loosing weight (that's soooo nice), I haven't really noticed any miraculous improvements in my level of joint pain, except. . .

The two times I've broken the diet, Memorial weekend and this weekend, I've been sooooooo much worse. As in immediately, the very next day. In fact, not only did I dream last night that I was being tortured by having my hands crushed (gotta be careful what you watch on TV right before bedtime) because my hands are in such bad shape, I also have been back and forth to the bathroom so many times I lost count since about 12:30 last night. Sooooo, I have to believe the diet is making a difference.

But here's the thing. I do think diet is key, both from my personal results and a lot of internet searching around and reading about autoimmune diseases, but is diet alone enough? and will it work fast enough? Because everywhere you go, 'they' say that early treatment of RA is crucial in preventing joint damage, and generally the accepted recommendation is to hit RA hard and early, before your window of opportunity closes.

And so that bottle of Arava still sits on my counter, and my frig is full of fresh veggies and eggs and fish, and never the twain shall meet.

Double Whammy

2008-06-06T07:53:00.003-05:00

Seriously. I can't choose which is worse, the fatigue or the joint pain. The pain would be easier to deal with if I wasn't so bloody exhausted most of the time; but the fatigue would be easier to deal with if everything didn't hurt all the bloody time. . . Hi Ho, Hi Ho, it's off to work I go. . .

News You Can Use

2008-06-04T10:51:00.005-05:00

American College of Rheumatology 2008 Recommendations for the Use of Nonbiolgic and Biologic Disease-Modifying Antirheumatic Drugs in Rheumatoid Arthritis.

Click and go.

Yeah, it's a mouthful, and the article itself is a brainful. . .

A Good Read

2008-05-29T12:19:00.004-05:00

"The sick person has been suffering severe upset, terror, anxiety, and helplessness. Add to this the sense of injustice, unfairness, and senselessness of being struck down by a disease, and the result may be a rage reaction of tremendous proportions. Often the target of this rage is the patient himself or herself. . . illness breeds a sense of helplessness. The chronic disease cannot be wished away. The disabilities are there to struggle with every day, and the threat of a major recurrence or increase in symptoms may be a constant anxiety tucked away not far from consciousness. With the feeling that the underlying problem cannot be solved. . . , many patients suffer intense unhappiness. . . Anger is the stage most hazardous to your emotional well-being. It is also where most people get trapped. . .There are some positive coping skills that are required by unavoidable health changes. . .Make Your Expectations Realistic. . . Approach Problems Actively. . . Seek Appropriate Help. . . Handle Your Anger. . . Participate. . . Live In The Present. . . Cherish The Good Times. . ."

This is a good article, written by a woman that "received her Ph.D. in clinical psychology, delivered a daughter, and learned she had multiple sclerosis all within the period of a few months". And this article came to my attention today in a timely fashion, since I have been spending way to much mental energy on anger, sadness, fear and a feeling of hopelessness/helplessness since the weekend.

Spoons

2008-05-27T16:21:00.003-05:00

I ran across this a while back, and thought I would share. Anyone else use too many spoons because it was a 'holiday' weekend?

The Spoon Theory

by Christine Miserandino http://www.butyoudontlooksick.com/

My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.

As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?

I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn't seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said "Here you go, you have Lupus". She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.

I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.

Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a "loss" of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.

She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?

I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of "spoons". But when you have to now plan your day, you need to know exactly how many "spoons" you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn't even started yet. I’ve wanted more "spoons" for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.

I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said " No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can't take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too." I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.

I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your "spoons" are gone, they are gone. Sometimes you can borrow against tomorrow’s "spoons", but just think how hard tomorrow will be with less "spoons". I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on "spoons", because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.

We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.

When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.

I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly "Christine, How do you do it? Do you really do this everyday?" I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, "I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared"

Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day's plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count "spoons".

After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can't go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said "Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted "spoons" and I chose to spend this time with you."

Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my "spoons".

It's Becoming Inescapable!

2008-05-20T09:50:00.009-05:00

So, I keep running into information linking inflammation and gluten and sugar and carbohydrates and insulin (or more specifically insulin resistance) and vitamin D and 'healthy' fatty acids.

This study was interesting, as it monitored C-reactive protein, which, if you've had blood work done for rheumatoid arthritis, was probably one of the inflammation markers tested. While this study is actually relating insulin resistance and atherosclerosis, the implications of insulin effects on inflammation are intriguing.

Also interesting is the blog post I have copied in full below.

Now granted, the autoimmune/inflammation/hormonal interaction is a complex thing, and lots of the studies and articles I've found (try Googling insulin, inflammation and rheumatoid arthritis) either contradict each other, or are unclear about the actual results of the study. It's partially the old chicken and the egg conundrum. But, there is a lot of convincing evidence linking insulin and inflammation, and gluten and inflammation, and 'good' fatty acids and a reduction inflammation.

One thing that I am personally quite sure about, is that processed foods, food additives and preservatives, and the nutritional impacts of factory farming are at best not helping, and likely are partially responsible for many health problems. I also personally think that, combined with other environmental factors, and a genetic predisposition, processed foods, food additives and preservatives, and the nutritional impacts of factory farming contribute to auto-immune diseases. And furthermore, I'm pretty sure that whole, unprocessed foods, at least 'do no harm' and are very likely to have a positive impact on overall health.

That said, I have been for the most part eating only whole unprocessed foods and no grains and low carb/low starch vegies and lots of fresh fish for quite some time, and I am NOT doing well. And yes mom, with the exception of some this weekend, I'm kicking the diet coke. I kind of feel like I've been in a continuous flare for the last couple of weeks, with occasional day or half day breaks here and there. Ugh!!

From the blog Hyperlipid (I've highlighted some sentences that went ding, ding, ding for me) -

Saturday, March 08, 2008

Gluten and rheumatoid arthritis

The quote below comes from Dr Freed, written in an editorial for the British Medical Journal, to commemorate the public sacrifice of Dr Arpad Pusztai on the altar of GM agribusiness (see the last line of the editorial). Dr Freed:

"Lectins stimulate class II HLA antigens on cells that do not normally display them"

Wheat germ agglutinin is a lectin and sections of gliadin (in gluten) are "lectin like". If you have an auto immune disease the quote is quite important. What is a class II HLA antigen?

If you really really want to know you can have a look here, which explains what MHC class I and class II molecules are. It's the simplified version, including the sausage in a hot dog metaphor which made my wife laugh. Sort of. EDIT: You probably need to know she's an immunologist to understand that last comment.

Here's a rough translation.

Class II molecules sit on the surface of cells, holding out a fragment of foreign protein (in this case a short fragment of gluten). Only certain sub families of immune cells should do this, certainly it should never be done by tissue cells of organs like the pancreas or thyroid as cited by Freed. I would add joint cells in the case of rheumatoid arthritis.

Class II expression is different from MIC expression but just as bad, if not worse.

Waving around a class II molecule on your cell surface is a direct invitation to a subset of white blood cells (in particular a sub group of lymphocytes, ie those with a certain molecule called the CD4 molecule on their surface) to come and interact with the cell displaying the Class II marker. CD4 molecules generally "talk to" class II molecules.

The class II marker molecule has to be holding out a gluten fragment and the CD4+ cell has to be able to recognise that fragment for them to interact. Given this situation, things happen. The CD4 positive cell does several things, one of which is that it starts producing lymphokines. That is it causes inflammation. Note that antibody production is not needed for this to occur.

Of course once the CD4+ cell has seen gluten it may well trot off to get antibodies produced. Or it may not. The immune system is frighteningly complex. If the CD4+ cell does interact with an antibody producing lymphocyte you get this.

Avoiding gluten helps. Forget the vegan bit, it's a failure to control variables in the study and not remotely needed. The gluten avoidance is essential.

LC (low carb) is very helpful too. I'll post the refs some time but basic premise is that the inflammatory soup production in response to class II/CD4 interaction is controlled to a large extent by NF kappa B, which is controlled by insulin which is controlled by carbohydrate in the diet. Insulin per se is anti inflammatory, chronic hyperinsulinaemia is pro inflammatory.

There are also non specific effects of PUFA in propagating the free radicals generated by the inflammatory response. Suet and dripping contain far more stable fats than vegetable oil does and these highly saturated fatty acids are almost immune to free radical attack in an inflammatory soup.

Vitamin D modulates the irritablity of most cells in the immune system so supplementation or serious sun bathing, without sun burn, probably has an effect to diminish all auto immune problems.

If you read the whole vegan paper you will see there was no radiographic improvement, though patients felt better. Too much carbohyrate, too many PUFA and there are several other plant sources of lectins beyond gluten. Anecdotally nightshade lectins (also mentioned by Freed) can be a potent trigger for rheumatoid arthritis in much the same way as gluten.

That's without going on to Ebringer's work on bacterial proteins and rheumatoid disease....

This aspect is probably also amenable to LC eating. Anyone with a degree of insulin resistance may well be transiently glucosuric on occasions while eating a normal diet. Bacteria love glucose. LC eating should starve any Proteus in the urinary tract because it stops any glycosuria. Proteus also lives in our gut and starving it here too, this time by fiber avoidance, would probably help.

So there are a few factors involved in rheumatoid arthritis. A serious LC, high saturated fat and minimal lectin diet should help.

As would an all over tan.

Peter

Rainy Days and Mondays

2008-05-05T15:25:00.001-05:00

Such a pleasnt combination!

ENT Visit and Arava

2008-05-02T14:17:00.007-05:00

This has been such a pleasant week. . . Not! Monday I had a (not unexpected) reaction to Indocin. The last time I tried Indocin it gave me vertigo, but did a really good job with my joint pain. Hoping that the time release action was the problem before, and that short acting Indocin taken three times daily would not give me vertigo, my rheumatologist and I thought we would give it another try. No such luck. After just five days on the short acting Indocin I started getting really bad vertigo, enough to make me nauseous and feel like, as I described it to my mother, I was going to 'fall out of my body'.

Unfortunately the vertigo was bad enough that I didn't feel like I should drive and so when I went home at lunch time, I stayed home, missing yet another 1/2 day of work. I've used 3 1/2 days already this year, and company policy allows for only five sick days a year, no borrowing from vacation. My company has been pretty understanding of the problems my RA has caused the past couple of years, but I'm always afraid that their tolerance will wear off.

The vertigo and being unable to drive also presented a problem with my appointment with the Ear, Nose and Throat specialist scheduled for Monday afternoon. Mom to the rescue! Since she was there I figured she might as well come in to the exam room with me; it's been a long time since my mommy has taken me to a doctors appointment!

The long and short of the appointment; I have some slight hearing loss in both ears, which is the likely source of the ringing, the NDAIDs are probably aggravating the ringing, making it sound louder, and I may have slight 'positional' vertigo (in other words, when my head moves into certain positions, it makes me slightly dizzy). The doctor said that the NSAIDs will not damage my hearing, so if I can handle the ringing and can't handle the added joint pain of not using NSAIDs, I can continue taking them. He didn't really have an explanation for the hearing loss, and his best suggestion was to come in every year and have my hearing tested. If I start rapidly losing more hearing, then some more aggressive testing might be in order.

Hmmmm, not particularly helpful. On the other hand, these days, no news is definitely good news!

The Indocin seems to be out of my system by today; no more vertigo and I'm back to taking my regularly scheduled doses of Lodine. Now. What to do about the Arava my rheumatologist prescribed?

Nothing I have found on the internet is in the least reassuring about this drug. In general, only 40% of people on this medication report relief of symptoms. Besides a long list of other side effects, it can cause birth defects, and can stay in your system for up to two years (unless you have a 'clearing' procedure involving multiple injections of either activated charcoal or cholestyramine). Within three years of the drug's commercial release, there were petitions before the FDA for it's removal from the market, due to deaths caused by liver failure. What concerns me the most is that two year thing; what do you do if you have significant side effects and it is that hard to clear the drug from your body?

I'm considering going back to my rheumatologist's PA and discussing plaquenil or maybe even another trial of methotrexate (which I swore I wouldn't take again).

In the mornings, which in general have been an unrelenting suckfest, I think I should give Arava a try, or at the very least definitely go in and get on plaquenil or methotrexate. In the afternoon and early evenings, when I (usually) feel better, I think I'm crazy to risk the side effects from any of these meds; hello? I'm already doing Enbrel and NSAIDs. Then by bedtime, or in the middle of the night when pain from something wakes me up (not that it happens too often, I'm a GOOD sleeper and I can usually roll off of what hurts the worst and go back to sleep), I'm thinking about trying the meds again.

Really my biggest concern is damage and the future, and how much damage there will be by the time I get to the future. But side effects from any of these drugs could cause trouble in the future too. . .

Long post, long week. . .

News You Can Use

2008-05-01T08:00:00.007-05:00

Vitamin D seems to be a hot topic in the medical field right now. One member of the Board of Directors where I work is a GP, and he is almost obsessively on the band wagon for this latest medical fad. Not that it isn't legit. Most of us don't spend much time in the sun any more, and the time that we do spend in full sunlight, we're likely to have slathered our self in sunblock. My rheumatolgist tested my vit D level the last time she did blood work, and it was very low. So I'm currently taking 2000 mg of D3 (which is more accessible to the body than D2, so check the label if you are taking or start taking vit D).

FYI, among the symptoms of a vitamin D deficiency are muscle/bone pain, low energy and fatigue, lowered immunity and sleep irregularities. Sound familiar? It's pretty strait forward thinking to imagine that anything that intensifies the symptoms of RA would worsen RA disabilities.

From Rheumatology News

Vitamin D Deficiency in RA Worsens Disability
DIANA MAHONEY (New England Bureau)

BOSTON — Vitamin D deficiency is prevalent in rheumatoid arthritis patients and may influence disability, making periodic assessment a crucial part of management, said Dr. Uzma J. Haque of Johns Hopkins University in Baltimore.

Of 62 RA patients followed at the Johns Hopkins Arthritis Center, Baltimore, from December 2003 through November 2006, those patients with vitamin D deficiency (defined as a serum 25-hydroxyvitamin D [25(OH)D] level below 30 ng/mL) were significantly more likely to report major difficulties in performing activities of daily living than were patients with normal levels, Dr. Haque reported in a poster presentation at the annual meeting of the American College of Rheumatology. Vitamin D deficiency was not, however, significantly associated with markers of RA, she said.

The mean age of the predominantly white, female cohort was 57.6 years; mean disease duration was 11.6 years. In addition to the serum concentration, the analysis included joint count, disease activity score, health assessment questionnaire (HAQ), and pain scores, Dr. Haque noted.

The investigators identified vitamin D deficiency in 37 of the 62 patients and observed that 25(OH)D levels fluctuated, ebbing lowest between April and June and highest between July and September, according to Dr. Haque. Vitamin D deficiency was not significantly associated with any demographic or RA characteristics, nor were there any significant links between vitamin D levels and disease activity score, joint counts, morning stiffness, or rheumatologist global assessments.

“In contrast, [vitamin D] levels were significantly and inversely associated with HAQ, even after controlling for disease duration,” Dr. Haque reported.

Shut Up!

2008-04-24T09:02:00.003-05:00

Ok, now I'm glad I'm going to the ENT doctor on Monday, because the ringing has gotten really, REALLY annoying!

Been to the Doctor

2008-04-23T14:23:00.003-05:00

I had a good appointment with the rheumatologist Tuesday morning - mostly.

I'm sticking with the Enbrel, since financially I don't think I could afford to try any of the other biologics (I'd be in real trouble without the Quick Assist program to help pay for the Enbrel). I'm going to try short acting Indocin (three times a day). I was on time released Indocin before, and it was giving me vertigo; but, I've noticed since then that a lot of time released meds give me slight dizziness, so I'm hoping that the short acting not cause that side effect, since it really did help with the joint pain when I was on it before.

And I've got a prescription for Arava, which has a similar effect (and similar side effects) as Methotrexate, except you take it once a day instead of once a week. I'm a little nervous about taking this one. I'm not going to start taking the Indocin and Arava at the same time. If I did and I felt great, I would be stuck taking both, since I wouldn't know which one for sure was really helping. If I had side effects, how would I know which one was causing the side effects? I'm going to start with the Indocin first for a couple of weeks and hope that it helps enough that I don't feel like I need the Arava. And I've got a prescription for Solaraze gel, which I had forgot to ask for when I saw my rheumatologist in January.

And I've got a referral to an Ear, Nose and Throat doctor for a hearing test. The ringing in my ears could be caused by the NSAID, or could be a sign of Autoimmune Inner Ear Disease and hearing loss (gulp!).

News You Can Use

2008-04-16T09:29:00.008-05:00

Seriously? 'Ya think!?! My co-pay until I starting using the Enbrel Quick Assist program (you have to request a card through you doctor) was $277 a month, bringing my grand total for all my prescriptions up to almost $400 a month. The Quick Assist program has been a financial life saver for me, since I was essentially spending more that I am making for most of last year. What is particularly frustrating about this trend in insurance is that many people that are effected the most by an increase in drug costs are also people that have a limited income because of their health condition.

Co-Payments Soar for Drugs With High Prices

Daniel Rosenbaum for The New York Times

Health insurance companies are rapidly adopting a new pricing system for very expensive drugs, asking patients to pay hundreds and even thousands of dollars for prescriptions for medications that may save their lives or slow the progress of serious diseases.

With the new pricing system, insurers abandoned the traditional arrangement that has patients pay a fixed amount, like $10, $20 or $30 for a prescription, no matter what the drug’s actual cost. Instead, they are charging patients a percentage of the cost of certain high-priced drugs, usually 20 to 33 percent, which can amount to thousands of dollars a month.

The system means that the burden of expensive health care can now affect insured people, too.

No one knows how many patients are affected, but hundreds of drugs are priced this new way. They are used to treat diseases that may be fairly common, including multiple sclerosis, rheumatoid arthritis, hemophilia, hepatitis C and some cancers. There are no cheaper equivalents for these drugs, so patients are forced to pay the price or do without.

Insurers say the new system keeps everyone’s premiums down at a time when some of the most innovative and promising new treatments for conditions like cancer and rheumatoid arthritis and multiple sclerosis can cost $100,000 and more a year.

But the result is that patients may have to spend more for a drug than they pay for their mortgages, more, in some cases, than their monthly incomes.

The system, often called Tier 4, began in earnest with Medicare drug plans and spread rapidly. It is now incorporated into 86 percent of those plans. Some have even higher co-payments for certain drugs, a Tier 5.

Now Tier 4 is also showing up in insurance that people buy on their own or acquire through employers, said Dan Mendelson of Avalere Health, a research organization in Washington. It is the fastest-growing segment in private insurance, Mr. Mendelson said. Five years ago it was virtually nonexistent in private plans, he said. Now 10 percent of them have Tier 4 drug categories.

Private insurers began offering Tier 4 plans in response to employers who were looking for ways to keep costs down, said Karen Ignagni, president of America’s Health Insurance Plans, which represents most of the nation’s health insurers. When people who need Tier 4 drugs pay more for them, other subscribers in the plan pay less for their coverage.

But the new system sticks seriously ill people with huge bills, said James Robinson, a health economist at the University of California, Berkeley. “It is very unfortunate social policy,” Dr. Robinson said. “The more the sick person pays, the less the healthy person pays.”

Traditionally, the idea of insurance was to spread the costs of paying for the sick.

“This is an erosion of the traditional concept of insurance,” Mr. Mendelson said. “Those beneficiaries who bear the burden of illness are also bearing the burden of cost.”

And often, patients say, they had no idea that they would be faced with such a situation.

It happened to Robin Steinwand, 53, who has multiple sclerosis.

In January, shortly after Ms. Steinwand renewed her insurance policy with Kaiser Permanente, she went to refill her prescription for Copaxone. She had been insured with Kaiser for 17 years through her husband, a federal employee, and had had no complaints about the coverage.

She had been taking Copaxone since multiple sclerosis was diagnosed in 2000, buying a 30 days’ supply at a time. And even though the drug costs $1,900 a month, Kaiser required only a $20 co-payment.

Not this time. When Ms. Steinwand went to pick up her prescription at a pharmacy near her home in Silver Spring, Md., the pharmacist handed her a bill for $325.

There must be a mistake, Ms. Steinwand said. So the pharmacist checked with her supervisor. The new price was correct. Kaiser’s policy had changed. Now Kaiser was charging 25 percent of the cost of the drug up to a maximum of $325 per prescription. Her annual cost would be $3,900 and unless her insurance changed or the drug dropped in price, it would go on for the rest of her life.

“I charged it, then got into my car and burst into tears,” Ms. Steinwand said.

She needed the drug, she said, because it can slow the course of her disease. And she knew she would just have to pay for it, but it would not be easy.

“It’s a tough economic time for everyone,” she said. “My son will start college in a year and a half. We are asking ourselves, can we afford a vacation? Can we continue to save for retirement and college?”

Although Kaiser advised patients of the new plan in its brochure that it sent out in the open enrollment period late last year, Ms. Steinwand did not notice it. And private insurers, Mr. Mendelson said, can legally change their coverage to one in which some drugs are Tier 4 with no advance notice.

Medicare drug plans have to notify patients but, Mr. Mendelson said, “that doesn’t mean the person will hear about it.” He added, “You don’t read all your mail.”

Some patients said they had no idea whether their plan changed or whether it always had a Tier 4. The new system came as a surprise when they found out that they needed an expensive drug.
That’s what happened to Robert W. Banning of Arlington, Va., when his doctor prescribed Sprycel for his chronic myelogenous leukemia. The drug can block the growth of cancer cells, extending lives. It is a tablet to be taken twice a day — no need for chemotherapy infusions.

Mr. Banning, 81, a retired owner of car dealerships, thought he had good insurance through AARP. But Sprycel, which he will have to take for the rest of his life, costs more than $13,500 for a 90-day supply, and Mr. Banning soon discovered that the AARP plan required him to pay more than $4,000.

Mr. Banning and his son, Robert Banning Jr., have accepted the situation. “We’re not trying to make anybody the heavy,” the father said.

So far, they have not purchased the drug. But if they do, they know that the expense would go on and on, his son said. “Somehow or other, myself and my family will do whatever it takes. You don’t put your parent on a scale.”

But Ms. Steinwand was not so sanguine. She immediately asked Kaiser why it had changed its plan.

The answer came in a letter from the federal Office of Personnel Management, which negotiates with health insurers in the plan her husband has as a federal employee. Kaiser classifies drugs like Copaxone as specialty drugs. They, the letter said, “are high-cost drugs used to treat relatively few people suffering from complex conditions like anemia, cancer, hemophilia, multiple sclerosis, rheumatoid arthritis and human growth hormone deficiency.”

And Kaiser, the agency added, had made a convincing argument that charging a percentage of the cost of these drugs “helped lower the rates for federal employees.”

Ms. Steinwand can change plans at the end of the year, choosing one that allows her to pay $20 for the Copaxone, but she worries about whether that will help. “I am a little nervous,” she said. “Will the next company follow suit next year?”

But it turns out that she won’t have to worry, at least for the rest of this year.
A Kaiser spokeswoman, Sandra R. Gregg, said on Friday that Kaiser had decided to suspend the change for the program involving federal employees in the mid-Atlantic region while it reviewed the new policy. The suspension will last for the rest of the year, she said. Ms. Steinwand and others who paid the new price for their drugs will be repaid the difference between the new price and the old co-payment.

Ms. Gregg explained that Kaiser had been discussing the new pricing plan with the Office of Personnel Management over the previous few days because patients had been raising questions about it. That led to the decision to suspend the changed pricing system.

“Letters will go out next week,” Ms. Gregg said.

But some with the new plans say they have no way out.

Julie Bass, who lives near Orlando, Fla., has metastatic breast cancer, lives on Social Security disability payments, and because she is disabled, is covered by insurance through a Medicare H.M.O. Ms. Bass, 52, said she had no alternatives to her H.M.O. She said she could not afford a regular Medicare plan, which has co-payments of 20 percent for such things as emergency care, outpatient surgery and scans. That left her with a choice of two Medicare H.M.O’s that operate in her region. But of the two H.M.O’s, her doctors accept only Wellcare.

Now, she said, one drug her doctor may prescribe to control her cancer is Tykerb. But her insurer, Wellcare, classifies it as Tier 4, and she knows she cannot afford it.

Wellcare declined to say what Tykerb might cost, but its list price according to a standard source, Red Book, is $3,480 for 150 tablets, which may last a patient 21 days. Wellcare requires patients to pay a third of the cost of its Tier 4 drugs.

“For everybody in my position with metastatic breast cancer, there are times when you are stable and can go off treatment,” Ms. Bass said. “But if we are progressing, we have to be on treatment, or we will die.”

“People’s eyes need to be opened,” she said. “They need to understand that these drugs are very costly, and there are a lot of people out there who are struggling with these costs.”

To Go, or Not To Go

2008-04-14T09:31:00.012-05:00

I'm not scheduled to go back to the rheumatolgist until July, and I'm still debating on trying to get back in to see her early. I'm actually doing better than I was a month ago. Catching that cold seems to have shaken up my immune system enough that I've been doing a bit better. But. I wish I was doing better.

My hands are a problem all the time now, and I'm having a really, really hard time with fatigue. The very first thing Enbrel seemed to help when I first started on it was fatigue; I hadn't felt so energetic in a long time; it was great. But now, not so much. It just makes it hard to get going, and to keep going, everyday. The work week seem to last forever, and I'm cutting back on the fun stuff on the weekends so that I will have some energy left for doing the 'have to do' stuff. I'm just so worn out all the time, and I'm sick of everything feeling like such a struggle. Most of the time I'm holding on to a positive attitude, but I'm just so tired!

The other two things that are really bothering me are 'brain fog' and ringing in the ears. The brain fog is maybe half RA, half just keeping up with life, but annoying nonetheless. Mostly just a constant series of little mistakes, like having a terrible time spelling when I'm typing, or having a hard time putting my thoughts and/or words together. I'm getting a little sick of going back and constantly having to double check and 'fix' things (you don't want to know how long it's taken to write this post).

Plus, the ringing is starting to drive me a little crazy, since it is most noticeable when things are quiet, like, hello! when I'm trying to go to sleep!

I keep going back and forth between thinking I should go in early to the dr, and thinking that I just need to suck it up and deal. I guess I'm not entirely convinced that there is anything the rheumatolgist can do to help, so why waste her time or mine. . .

More News You Can Use

2008-04-08T08:19:00.004-05:00

A recent University of Iowa study reveals a biological link between pain and fatigue and may help explain why more women than men are diagnosed with chronic pain and fatigue conditions like fibromyalgia and chronic fatigue syndrome.

Working with mice, the researchers, led by Kathleen Sluka, Ph.D., professor in the Graduate Program in Physical Therapy and Rehabilitation Science in the UI Roy J. and Lucille A. Carver College of Medicine, found that a protein involved in muscle pain works in conjunction with the male hormone testosterone to protect against muscle fatigue.

Chronic pain and fatigue often occur together -- as many as three in four people with chronic, widespread musculoskeletal pain report having fatigue; and as many as 94 percent of people with chronic fatigue syndromes report muscle pain. Women make up the majority of patients with these conditions.

To probe the link between pain and fatigue, and the influence of sex, the UI team compared exercise-induced muscle fatigue in male and female mice with and without ASIC3 -- an acid-activated ion channel protein that the team has shown to be involved in musculoskeletal pain.

A task involving three one-hour runs produced different levels of fatigue in the different groups of mice as measured by the temporary loss of muscle strength caused by the exercise.

Male mice with ASIC3 were less fatigued by the task than female mice. However, male mice without the ASIC3 protein showed levels of fatigue that were similar to the female mice and were greater than for the normal males.

In addition, when female mice with ASIC3 were given testosterone, their muscles became as resistant to fatigue as the normal male mice. In contrast, the muscle strength of female mice without the protein was not boosted by testosterone.

"The differences in fatigue between males and females depends on both the presence of testosterone and the activation of ASIC3 channels, which suggests that they are interacting somehow to protect against fatigue," Sluka said. "These differences may help explain some of the underlying differences we see in chronic pain conditions that include fatigue with respect to the predominance of women over men."

The study, which was published in the Feb. 28 issue of the American Journal of Physiology Regulatory, Integrative and Comparative Physiology, indicates that muscle pain and fatigue are not independent conditions and may share a common pathway that is disrupted in chronic muscle pain conditions. The team plans to continue their studies and investigate whether pain enhances fatigue more in females than males.

"Our long-term goal is to come up with better treatments for chronic musculoskeletal pain," Sluka said. "But the fatigue that is typically associated with chronic widespread pain is also big clinical problem -- it leaves people unable to work or engage in social activities. If we could find a way to reduce fatigue, we could really improve quality of life for these patients."

In addition to Sluka, the UI research team included Lynn Burnes, a research assistant and lead author of the study; Sandra Kolker; Jing Danielson; and Roxanne Walder. The study was funded in part by grants from the National Institute of Arthritis and Musculoskeletal and Skin Diseases.

University of Iowa Health Sciences

5141 Westlawn Iowa City, IA 52242 United States

http://www.uiowa.edu/

News You Can Use

2008-04-04T15:26:00.009-05:00

I realized the other day that, in one way or another, I come across quite a bit of good RA related information, which I usually pass along to my mom, but really should be passing along here as well.

Rheumatoid Arthritis Patients Benefit From Vegan, Gluten-free Diet
Main Category: Arthritis

Also Included In: Nutrition / Diet;Cardiovascular / Cardiology

Article Date: 19 Mar 2008 - 2:00 PDT

A gluten-free vegan diet may improve the health of patients with rheumatoid arthritis, according to new research from Karolinska Institutet. The diet has a beneficial effect on several risk factors for cardiovascular disease.Rheumatoid arthritis is associated with an increased risk of atherosclerosis (hardening of the arteries) and cardiovascular diseases. The underlying causes are unknown, but researchers suspect that the disturbed balance of blood fats seen in patients with rheumatoid arthritis may be part of the explanation. A research team at Karolinska Institutet has shown in a new study that a gluten-free vegan diet has a beneficial effect on cardiovascular risk factors in people with rheumatoid arthritis. The effect was seen when a group of patients who kept to a gluten-free vegan diet for a year were compared with a control group which had followed ordinary dietary advice. Vegan food had a positive effect on symptoms of the disease, which were more pronounced in the control group. Blood levels of oxidised LDL-cholesterol, a risk factor for atherosclerosis, were also lower in the group which kept to the vegan diet. The vegan group also had higher levels of anti-PC, a type of antibody that the researchers believe has a protective effect against atherosclerosis. "Our findings suggest a new mechanism by which the level of natural protective antibodies can be increased. They also show that diet can have effects on the immune system with implications for the incidence of disease", says Professor Johan Frostegård, who led the study. The study was initiated by Professor Ingiäld Hafström and was carried out within the framework of CVDIMMUNE, an EU consortium of ten European partners led by Johan Frostegård. The consortium is studying the significance of anti-PC in the hope of developing a vaccine against atherosclerosis.

'Gluten-free vegan diet induces decreased LDL and oxidized LDL levels and raised atheroprotective natural antibodies against phosphorylcholine in patients with rheumatoid arthritis; A randomized study' Ann-Charlotte Elkan, Beatrice Sjöberg, Björn Kolsrud, Bo Ringertz, Ingiäld Hafström and Johan FrostegårdArthritis Research & Therapy, 18 March 2008.

Hmmm. I have to admit I don't really think I could do a completely vegan, gluten free diet. Buu-uut, I certainly have been making an effort to change my eating habits, as it is pretty evident, in my experience, that certain foods can trigger RA pain. I think some of the big no-no's for me are processed sugar and processed flour and soda (mmmm, I love my Diet coke). In fact, what I have really been concentrating on, food wise, is 'whole foods'. As I have been saying, 'If it can't be yanked out of the ground, pulled off a tree, or fished from the ocean, I should probably avoid eating it'. And I have been additionally trying to keep those foods as uncooked/unprocessed as possible.

Now, if I could only stick to that diet. . .

Knock on Wood

2008-04-03T09:45:00.008-05:00

Last week I came down with a cold and, although I was miserable for a few days, it seems to have cleared up with no secondary infections. . . and I stayed on Enbrel the WHOLE TIME! The last time I saw my rheumatologist, she said that some current studies are indicating that unless a person is sick enough to need hospitalization, they can and should stay on biologicals and keep their immune system on an even keel, not to mention avoiding the rebound RA flare that comes from skipping doses of a biological. Well. She certainly wasn't recommending that I do the same, just giving me some information, but the last time I got a cold I went off Enbrel and ended up with both secondary upper respiratory infections and a serious flare that just wouldn't go away. In fact, that bout with a cold over the holidays had long term repercussions; I was doing so well before the holidays and have never gotten back since, not to mention that in the past few months I have had my first ever visible redness and swelling on the knuckles of both hands, indicating a probable disease progression.

Actually, to get the knock on wood part, since I have gotten over my cold, I've been doing pretty darn good. Not as good as I was doing before the holidays, but soooo much better than I have been doing the past couple of months. I don't know if that just means that I'm not really over the cold yet, although it feels like it, or if the cold shook up my immune system enough to make a difference in the RA. Whatever. I just hope it sticks.

Grrrr!

2008-03-17T14:45:00.004-05:00

Home sick, as in I can't cope with the pain . . . again. I think it's time to go back to the rheumatologist; I'm not scheduled to go back until July, but I'm sooo not doing very well right now. My mom has suggested I try to get a prescription for Minocylcine since that helped her for a while, and I've also thought about asking to go back on Indocin. I was initially on Indocin, but it was giving me dizzy spells and I was switched to Lodine; however, I've noticed that a lot of time release meds make me dizzy and I'm hoping there is a formulation of Indocin that isn't time release. I really, really don't want to go back on Methotrexate. But I think I'm going to have to do something. First I'm going to try to go cold turkey on Diet Coke, since apparently the caramel coloring used in soft drinks can make inflammation worse.

I've taken some medicine for pain, and slathered on some Solaraze, and strapped on some Thermacare hand wraps. I tried to take a nap, but popped awake after about 5 minutes and couldn't get comfortable enough to go back to sleep. Think I'm going to play in Photoshop, or just lay on the couch and veg out to the TV.

I've been feeling really crappy, more or less all the time, for the past couple of weeks. It's times like this that I can't help but worry about where all this is going in the future. . .

One Step Forward, Two Steps Back

2008-02-26T10:42:00.008-06:00

I'm doing good, I'm doing bad, I don't know, ask me later.

Most of the time lately I feel like I'm doing worse. Ever since I had to stop taking Enbrel for a couple of weeks at the holidays because I was sick, I don't think it has worked as effectively. For the month or so before the holidays, I was waking up without even any stiffness in the mornings; I was doing awesome, with just a few off days here and there! Now, not so much. One thing that has really been worrying me is that since the holiday season, I have developed several knuckles on both hands that are permanently red and swollen. I've had hand and wrist pain before, but never any obvious reddness or swelling. So I have to assume that the arthritis, in my hands at least, is getting worse.

So there's that. The last time I went to my rheumatologist, I mentioned the high co-pay I have for Enbrel and she gave me information about the Enbrel Quick Assist program. I called and registered for it the next day and the program is essentially going to help pay my co-pay; I'm down from paying $288 a month for the Enbrel alone, to $75 a month. Great! Huge! Stupendous! But. . .

First I realized that I needed all new tires, because all of them were totally bald (thanks for checking mom! I think). Four hundred dollars later. . . four new tires. Cha-ching! Second, I went to a new dentist to see about getting The Tooth finished.

The Tooth is a molar that two years ago I was told needed a crown by dentist A. But that year I also needed root canals on two other teeth, and a couple of other crowns and my insurance has a cap of $1500 a year, which almost covered one complete root canal and the rest of the dental work I had to pay out of pocket, so The Tooth was put on the back burner. So the next year I went into dentist A and she said you need a root canal on The Tooth. And she made me mad, because her office had over charged me by $400 dollars the year before, and had just sat on the money for an entire year! And I requested laughing gas when I called to get the appointment, because dentist A could never get me numb, and all the work she did on me the year before involved PAIN! And when I went for the appointment, and wrote a check (including laughing gas, which apparently my insurance company doesn't cover) and sat down in the chair, she said the mask for laughing gas gets in her way, so we won't use it. Follow more pain, and she just gave up working on The Tooth at all and said come back after your root canal, The Tooth won't have any feeling then.

So, enter dentist B. Who, after doing x-rays, said you have another tooth that needs a root canal, plus one that needs a filling or maybe a crown. OK. . . Meanwhile, dentist A had charged my insurance company for the full crown, even though The Tooth still needed a bunch of work; so boo hoo for me, pay for all this dental work out of pocket again this year. But dentist B couldn't finish the root canal on The Tooth, because the roots are too tiny. He says, go to an endodontist and have them finish The Tooth.

Which I didn't do. But in January of this year, after I got in bed to go to sleep one night, I coughed. And off popped the temporary crown on The Tooth. Enter dentist C (because dentist B's office no longer offers IV sedation) and we are now up to February of this year. He also says go to an endodontist and then I'll do the crown. Oh, and try to get dentist A to pay the insurance company back for the crown she never did, or you'll have to pay out of pocket for all this.

For the past year, I've been paying about $380 a month altogether for my prescriptions, and paying off all the dental work from the beginning of last year. There just ain't no reserve left for dental work again this year.

So there's that too. And work is about as bad as it's ever been, stress wise. There are so many things screwy at work, I don't even know where to start. So there's that.

I'm doing good, I'm doing bad, I don't know, ask me later.

Putting A Definition to It

2008-02-11T20:27:00.008-06:00

It being pain, or dicomfort. This topic caim up on an RA message board that I visit sometimes. What is the difference between discomfort and pain? When does severe discomfort become pain?

It was a very interesting discussion, with most people agreeing that discomfort is a level at which you maybe don't want to perform an activity, such as walking, but you can do it. Pain is a level at which you cannot peform an activity without your performace suffering, such as only bein able to walk with a limp. However, this wasn't really the interesting part of the discussion.

What was really interesting was when the discussion turned to the effect of discomfort and pain. For people with RA, discomfort, sometimes severe discomfort, is part of everyday life; BUT if every moment of every day is accompanied by discomfort, doesn't that really become pain? If slight discomfort can increase and increase until it becomes pain, isn't constant, moderate to severe discomfort really the same as pain? Which is more tolerable? Temporary pain, or unrelenting discomfort? How does dealing with pain/discomfort every day effect our mental outlook, our temperment, our ability to cope, or our quality of life?

Another interesting aspect of the discussion, and maybe one of the reasons that the question came up at all, was what does your level of discomfort and/or pain indicate about the effectiveness of your treatment for RA. Does on and off pain mean that damage is probably being done to the joints in question? Or is constant discomfort a more important aspect of evaluating likely joint damage?

That Wasn't So Bad

2008-01-21T21:38:00.002-06:00

Yes, I've discovered that later is better than earlier, at least when it comes to how long I let my Enbrel warm up prior to injecting. I've been letting it warm on the counter for 15-20 minutes, and last night I let it warm up for half an hour, mostly because I got sidetracked doing dishes. That was the least painful injection I've had in recent memory. Note to self, be patient and let the darn thing warm up for a full half an hour.

Also, I'm doing soooo much better. I think the prednisone helped get things under control, and I have tried to do my part by doing a little strength training every day (who knows if that is really helping, but I don't think it can hurt). Man, what a relief. After last week, I can really appreciate feeling good; not pain free, but good. Now just keeping my fingers crossed that I still feel good this weekend for my agility trial!

Update: Mmmm hmmm. All of the above is a lie. Apparently that pain free injection was a one off. Oh well. . .

Better

2008-01-18T08:54:00.000-06:00

I am definetly starting to feel better. I ended up taking a half a sick day on Wednesday, although it was anything but relaxing. Just about the time I had finally gotten comfortable to drift off to sleep, my boss called from work. Geez, I am so sick of the drama at work. He was just short of yelling over the phone, and after I finished talking to him I turned around and called back to talk to our secretary/office manager to find out what was going on, and I could hear him screaming at the top of his voice at people in the background. I don't think I have to explain why I'm taking a vacation day today. 'Nuff said.

Since I think strength training type exercise was part of what was making a difference during the weeks that I was feeling so awesome, I starting back with that Wednesday evening, even though I felt so sh!tty. It really does seem to make a difference in the amount of pain I have, at least from the waist down.

I'm glad I'm feeling better today; I have spent too many vacation days in the past just trying to rest and not feeling up to doing anything fun, and I feel up to running some errands (some of them fun, some just stuff that I need to get done).

Tie A Knot And Hang On

2008-01-16T08:20:00.000-06:00

That's what you're supposed to do when you get to the end of your rope, right? This flare just isn't giving ground at all! I've been in baaaad shape since Friday, and more or less spent the entire weekend in bed. I can't think of a single joint right now that isn't screaming at me . Last night I went ahead and injected the dose of Enbrel I skipped while I was sick. Lots of people (including my mom) are on two doses a week of Enbrel, so it's safe enough, and I'm hoping that the mid-week, 'extra' injection will get me back to where I was at a few weeks ago faster. I also started on some prednisone last night. I had been thinking about trying to get an appointment with the PA for my RA doctor and asking for a steroid injection, but then remembered that I had a prednisone prescription that I had never used from back when I was trying to get over my sinus infection/bronchitis. Hope it helps. I just can't hardly stand hurting so much for days on end. Everything is so hard to do, and work is just awful. Every morning this week I've debated with myself; stay home or go to work. I hate to start eating away at my five measly sick days so early in the year, but sitting trapped behind a desk and playing nicey nice with all the people at work is so hard when all I want to do is crawl into bed and not move.

Thank doG for the Weekend!

2008-01-12T08:50:00.000-06:00

Well, I'm finally over the cold/flu and sinus infection and bronchitis that I got over the holidays. That's good. What's not so good is that I seem to be in a flare right now. As in it hurts to sit, it hurts to lay down, it hurt to walk, it hurts to pet the dogs, it hurts to hold the phone, it hurts to type, and I can barely lift my coffee pot. I had to skip a dose of Enbrel while I was sick, which makes me soooo mad because I had been doing better the past few weeks; better than I had been for a loooong time. I'm pretty sure that what has happened is that my immune system came roaring back to fight the cold and infections after I skipped my dose of Enbrel, and now is going wild again on my joints. It's hard not to be discouraged.

I'm so glad it's the weekend. The last couple days of the week were so hard; I'm so glad today to at least be at home hurting, instead of trying to work and smile and make nice while hurting. Actually, I was supposed to be at an agility trial this weekend, and although I was disappointed when I found out that my entry must have gotten lost in the mail, I'm really glad that I don't have to try and decide to go or not. It's always so hard to decide about things like that; do I miss out on doing something fun, and risk ending up being miserable while I'm there and wishing I'd stayed home? Or stay home and feel bad that I'm missing out on all the fun things that I want to be able to do?

I'm just going to take it slow and easy today, and worry about getting stuff done tomorrow. I do my Enbrel injection on Saturdays evenings, so maybe, just maybe, I'll feel a little bit better tomorrow.

Half Full or Half Empty?

2008-01-11T14:39:00.000-06:00

Such a cliche, I know.

I've got to admit for the past few weeks I've been in the mental mindset of the glass being half empty. Coming down with a bad cold/flu on Christmas Eve and then missing my long awaited trip after Christmas because I was just too sick to go, was strike one. I missed an Enbrel injection because you can't take Enbrel when you're sick, and so I have had more and more joint pain since the missed dose, when I had been doing soooo well! Strike two for my mental outlook. In fact, this morning I woke up to worse pain than I have had in a loooong time, particularly in my hands, which made getting ready for work and working all day on the computer torture.

And I've spent a lot of time lately thinking about the permanence of having RA, and about all the things in my life I probably will never get to do again, and certainly never get to do again without paying for it with a lot of pain. And that's strike three for my mental outlook. I'm out. Or at least, I have been out. Discouraged and grumpy and tense.

But this afternoon, for what ever reason, I thought about all of the people that have NEVER gotten to do the things that I have done. The many, many people that are born with health problems, or are struck so early in their life with health problems, that they never had the opportunity to do the things that I miss doing.

I may never ride a galloping horse again, or ride a mountain bike careening down a steep hillside, but I do have the fond memory of doing those things.

So I'm thinking I need to be grateful for the things that I have done in the past, and concentrate on finding new things that I can enjoy now.

What's In A Name

2007-12-03T15:45:00.000-06:00

I keep forgetting to mention why this blog is called 'Yeah, I've Got That' and I also keep forgetting to give some background on my story with RA. So. . .

The name of this blog is a tongue in cheek, cranky jab at all the people that don't realize that there really is a difference between osteo (wear and tear) arthritis, and rheumatoid arthritis, an autoimmune disease. I don't know how many times I've been asked for one reason or another what's wrong with me (oh my, I could get a little goofy with those kinds of answers) and when I reply that I have rheumatoid arthritis, the response is 'Oh yeah, I've got that (in my knee, back, pinky finger, whatever)'. I don't discount for a second the pain of someone else, for whatever reason, but it's not the same. It's kind of gotten to be like when someone asks what kind of dogs I have and I reply, 'Cardigan Welsh Corgis' and all people hear is Corgi, and they say 'Oh, like the Queen of England has'. And I just smile and say 'Mmmm hmmm'. Hence, the name of my blog. Because folks, RA sure ain't osteoarthritis, and a Cardigan Corgi sure ain't a Pembroke Welsh Corgi!

Next time, how'd I get here from there. . .

Murphy's Law of RA

2007-11-30T10:51:00.000-06:00

Just so I'm clear here, this is a place for me to come and bitch and be as whinny as I want. I know it's not all completely awful, and in fact most days I don't spend too much time dwelling on how much it sucks to have RA, but other times. . .

I have a big dog show this weekend and I'm showing both dogs. So of course I feel like complete crap today. Woke up with every joint feeling like it may explode, and it's not one of those days that starts of bad and get better after a few hours. It's one of those days that starts off bad and just gets worse. Now I'm at work with hours to go before the end of the day and I've taken as many meds as I safely can and still function at work and drive my car, and for now at least, the meds don't seem to have even touched the pain. Dammit!

Why do these really sucky days always seem to come at the worst possible time?

Brrrr, Ouch, Brrrr, Ouch

2007-11-29T15:37:00.000-06:00

Oh yes, I used to adore winter. Crisp weather, cozy sweaters, hot chocolate, and the holidays; what's not to love? And I really do still love all these things, but winter, and cold fronts, kinda suck if you have RA. Everytime a front comes through and the barametric pressure changes - OUCH!

RA Mornings

2007-11-11T07:10:00.000-06:00

If you have Rheumatoid arthritis, mornings can be one of the worst times of the day. If it's a good day, after a couple of hours the pain and stiffness start to work thier way out; if it's a bad day, things may just continue downhill.

And mornings are the time of day that most of us have to hit the ground running; things to get done before you leave for work, and getting yourself ready to face the work world. Weekends can be nice, if I don't have anything going on. I can just kind of slump around until both the meds kick in and the soreness just naturally works itself out. But lots of weekends don't work out that way since weekends can sometimes be just as busy as work days.

I think the hardest part about mornings is that combined with some of the worst soreness of the day, this is the time of day that sets the tone for the rest of the day. This is the time of day that being irritable and frustrated can really get me mentally started on the wrong foot. This is also the time of day were I make decisions about 'Do I stay home from work, or a dog show, or a fun event'. And this is often the worst time of the day to make that decision, since I usually do feel better in a few hours. For this reason, I also try to really resist getting irritable and frustrated by the soreness first thing in the morning, because if I'm going to be feeling better later, why ruin the day with a 'bad attitude'.

Now, off to the dog show! Wish me luck!

Each Day A New Beginning

2007-11-07T14:12:00.000-06:00

Years ago I had a daily meditation book for women called 'Each Day, A New Beginning'. Actually, I probably still have it around somewhere, but it's been years since since I read the daily meditations in it. The phrase, 'each day, a new beginning' has always been one of those that has stuck in my head. The idea that every morning when you wake up you have a chance to try again. A chance to get up earlier, work harder, be more compassionate, be more patient, do a better job of keeping house, eat a more healthy diet, get more exercise, spend more time doing the things that are really important, plan for the future, stop sweating the small stuff, and seize the day; to name a few of things that go through my mind when I think 'Each Day, A New Beginning'.

On the other hand, another phrase that has stuck in my head over the years is 'I'll worry about that tomorrow', alla Scarlet O'Hara in 'Gone With The Wind'. This is a tricky one. Because while there are many times that a problem that seems so huge and insurmountable today, shrinks down to manageable size after a nights sleep, this is also a rather dangerous way to put off dealing with real problems, that need real solutions, as in now.

The idea of worrying about problems tomorrow has been a big help to me over the years. Let's face it, there are a lot of things in life that we have no control over, like being effected by rheumatoid arthritis, or a family member (including pets) having health problems, or loosing a job, etc.; and worrying about these things, or worrying about things that might happen in the future, just ruins the joy that we can take in the here and now, in today. But, I know that there are real problems or situations that I could have done something about, but I just kept putting off dealing with them until tomorrow, and tomorrow never came (or passed me by when I wasn't looking).

The final motto I have, if you want to call it that, is 'No Matter Where You Go, There You Are'. I'm not sure who originally coined this phrase, but I first heard it in the movie 'Space Balls' (surely one of the stupidest, but most innocently funny sci fi spoofs ever filmed). This one is a good reminder that getting up earlier, working harder, being more compassionate, being more patient, doing a better job of keeping house, eating a more healthy diet, getting more exercise, spending more time doing the things that are really important, planning for the future, and seizing the day will not bring me contentment in and of themselves. Contentment, or happiness if you will, is an inside job that is a product of a lot of things that can't really be named. Having a better job, a better place to live, a better car, better clothes, more money, or any of the other material things that the world tells me I need to have to make me happy, won't really lead to happiness, because no matter where I go, or what I do, I'm taking myself with me, baggage and all. If I'm unhappy deep down inside, thinking that 'If I could just (fill in the blank)' I would be happy', is a lie. Buying a new whatever, or moving to where ever, or changing anything on the outside, is a just a patch on a bigger problem. Reminding myself of that with the phrase 'No Matter Where You Go, There You Are', helps me keep perspective, especially when constantly barraged by society's messages that everything will be ok if you just buy this, or act this way, or wear this, or live here, or do that.

So there you have it, the three motivating forces that I try to bring into balance in my life; 'Each Day a New Beginning', 'I'll worry about that tomorrow' and 'No matter where you go, there you are'. Confusing, no?

I've been pondering all of this a lot lately, as well as more global thoughts of, what do I want out of my life, what is my purpose for being here, where am I going from here, and is this all there is (and if this is all there is, what do I want to do with it)? DoG knows, I don't' have any answers, at least not today, and maybe that's really the whole point. Striving, seeking, questioning, getting knocked on your butt, and getting up again and again to strive, seek and question all over again.

In any case, one thing I do know for sure is that a nice snuggle with my dogs is always a good idea, and good for whatever ails 'ya!

And some days, I just want a soft landing place when I start to crash and burn, or at least a parachute.

2007-10-15T21:48:00.000-05:00

I promise I'll actually get around to starting this soon.

Anyone who has rheumatoid arthritis, or anyone living with someone who has RA, or anyone wanting to learn more about RA, is welcome. I remember looking and looking for blogs dealing directly with rheumatoid arthritis; I wanted to know how other people got about the business of living their lives after getting knocked on their @ss daily by this disease.

And besides, sometimes I just need someplace to vent.