Wednesday, February 22, 2012

Daily Challenge

Inspired by Nessy at lipstick, perfume, and too many pills, I've decided to join the Daily Challenge. Everyday they will send me a small, health-based challenge to improve my daily life and overall health. And it's not a big thing to commit to doing one small thing to improve your health every day. So let's see how it goes!

Here is today's challenge:

How to do it

What's your favorite healthy go-to drink? A glass of sparkling water with a slice of lemon or lime? A cup of a delicious herbal tea? A cold glass of low-fat or skim milk? Whatever makes you savor your sips, share it!

Why it matters

Staying hydrated is key! Every system in our bodies needs water, and without enough of it, we can feel sluggish or headachey. Unfortunately, it's all too easy to hydrate ourselves with drinks that are high in sugar and calories. By sharing a healthy drink, it may motivate you to think of other good-for-you drinks to guzzle - and you may get some good ideas from others!

Fun Fact

The average person in the United Kingdom will drink about 80,000 cups of tea during his or her lifetime.
For me, especially since I got pregnant, I have been a whole lot more conscious about what I drink and trying to stay hydrated. However, I have to admit that eliminating sugary (and caffeinated) drinks has not been easy for me. In fact, as far as the caffeine category goes, I will admit to not being entirely successful in that department - every once in a while I can't resist sneaking in a Coke or Dr. Pepper, and, since aspartame gives me a major headache, I don't drink the diet ones either (sorry, kid!!).

But, for the most part, I have replaced soda with wonderful Boulder tap water. When I need a little bit of bubbles I've been drinking Pellegrino with a little lemon or lime juice in it. And, to make sure I get the calcium I need (so the kid doesn't steal what he needs from my bones) I've been drinking a lot more non-fat milk - we get ours from a local dairy! It gets delivered to us every Monday in glass bottles and everything, fresh from the cow and delicious!!

And my friend MK shared this awesome idea: "I love tap water with homemade ice cubes that have blue berries or strawberries frozen in them!" Those ice cubes would be nice in my Pellegrino too!!

So that's Day 1 of the Daily Challenge - and so far so good!

Tuesday, February 14, 2012

Happy Valentine's Day!!

Check out my Valentine's Day guest post on CreakyJoints.org!

Thursday, February 9, 2012

Some News For You!

It's a boy!!

Parker

You all know how much I love and admire the kids with JA - their determination to keep loving life despite their arthritis inspires me every day! Today I've been inspired by Parker, who made a video about what it's like to live a week in his life. I want to share it with you:

Friday, February 3, 2012

Physical Therapy

It's snowing just a little bit in Boulder today. The picture is of the snow that has accumulated on the fence in my back patio since last night - I would say it is almost a foot. And it doesn't look like it is planning to slow down any time soon.

So, after looking out the window, I guess I wasn't too surprised to find a voicemail on my phone letting me know that my physical therapy appointment for today had been cancelled. What did actually surprise me was how that message made me feel: slightly disappointed, actually. Which is a really good thing - because it means I actually like this physical therapist and I actually think it's helping.

After my last less than stellar physical therapy experience, I have to admit I was pretty reluctant to waste my time and effort (and money) trying it again. But the pain in my back wasn't getting a lot better, and my belly certainly isn't getting any smaller, and I can't exactly just take a handful of Advil and hope the pain goes away. So last time I saw my OB I bit the bullet and asked her for a recommendation for PT. 

And I am ever so glad I did. She recommended a rehabilitation center associated with a branch of the same hospital where I will give birth - and they actually have PTs who specialize in prenatal therapy. (And postnatal therapy, which may also turn out to be super useful). SCORE. So I've been seeing this new PT for two weeks now. This morning, when I was actually disappointed that my appointment was canceled, I realized that this PT is actually helping

This PT has been focusing more on loosening and strengthening the muscles in my back (as opposed to focusing on the actual SI joint itself). Now that I think about it, the physical manipulation she has been doing and the exercises I have been doing really do seem to be helping the pain in my back - especially since I am now showing a whole lot more than when I was seeing the previous PT. Plus she is super nice and willing to answer all of my questions and she is full of good suggestions. For example, on Wednesday she pointed out that the pregnancy is causing me to stand with my pelvis tipped forward, which is putting extra strain on my back. And, when I thought about how I have been "naturally" standing recently I realized she was right (which is probably how I was standing during the three hour visit to Babies 'R Us last weekend, which explains the extra pain I was in this weekend). So of course she showed me how to correct that.

In any event, though I am disappointed not to have her help today (and a little nervous that I will have to until next Wednesday to see her again) I am really glad I had the realization that it this PT is actually helping. That makes me feel good. Because it did take a lot of effort on my part to start over and try again with a new PT. But, as it turns out, with a trustworthy recommendation and someone who actually specializes in my issues, it was totally worth the effort.

Thursday, February 2, 2012

Arthritis Patients Who Rely on Medicare

As part of my Arthritis Ambassador assignment this month, I just emailed my Congressional Representative about physician reimbursement payments and therapy cap exceptions for arthritis patients who rely on Medicare. 

I know, I know, I am only 29 years old - nowhere near the Medicare age of 65. And most of the arthritis patients on Medicare are probably dealing with OA anyhow, rather than RA. So why on earth do I care what happens with Medicare? Here's why:

For one thing, arthritis is unacceptable. Period. Any type of arthritis pain seriously affects your quality of life. And I think anyone who suffers from arthritis is entitled to treatment.

For another thing, if long term solutions for these issues are not reached, patients with arthritis who rely on Medicare might have trouble accessing their doctors when they really need care. Or they may have to stop their arthritis therapy treatments because of the prohibitive cost. That just doesn't seem right to me. 

As for me, more personally, RA is a chronic disease - one that I will literally have to deal with for the rest of my life. Someday I may need Medicare myself to get the arthritis treatment that I need. In the meantime, the structure of Medicare could potentially affect my own health insurance policy.

For this reason - for myself, my family, and other suffering from arthritis - I've asked my Representative to:
  1. Extend the therapy caps exception process
  2. NOT to cut Medicare physician payments
  3. And to find long-term solutions to these issues so arthritis patients who rely on Medicare can have access to the health care they need and deserve.
This is an issue that Congress is working on right now - and they are only working on it until the end of February! So, while they are deciding what to do, it would be really great if members of Congress heard from people who really care about arthritis. 

If you want to take action too, you can send a quick email to your Representative by clicking here.

The Post-Birth RA Flare

In my opinion, there really isn't a lot of useful information out there about dealing with RA & pregnancy at the same time (which is one of the reasons I decided to share my story on this blog). Of the material that does exist, most of it is frustrating and scary rather than positive and uplifting. And you really have to dig through the depressing stuff if you want to find advice about how to conceive/improve your sex life while dealing with RA. 

When you have RA and have actually managed to get pregnant, you start looking for a different type of information - help and advice for during and after pregnancy. Of the information that does exist on this topic, there are two points that the vast majority of articles seem to agree on:
(1) It is pretty likely that you will experience some kind of remission during your pregnancy. And I've already written a post about my thoughts on the big R-word.
It's the second point all these articles seem to make that has got me thinking (and worrying) lately:
(2) Shortly after giving birth, your RA is likely to flare. Badly. And, considering you will be recovering from giving birth and you will have a brand new baby to take care of, the unanimous conclusion is that it will really suck.
Six months after the birth of her first child, Chaunté Smith couldn't get out of bed. She was in "excruciating pain." 
Awesome. That sounds like a lot of fun. The article then continues with these gems:
"I could barely walk. I couldn't pick up my newborn." 

"The pain is so excruciating you will know. You can't even flip a light switch."

She became very sick after her delivery, and when she had completed six weeks of breast-feeding, she resumed her regimen of medication.
(Also, here's my personal favorite quote from the article, which is actually totally unrelated to the point I am trying to make in this post. But it makes me so very mad that I just couldn't pass up commenting on it: Women can be affected by RA as early as in their 30s. Hahahahahaha. What a funny joke!!! Good thing I just turned 29 and I've already been dealing with RA for three and a half years!!!! Way to spread the ignorance that arthritis doesn't affect young people, Huffington Post. Grrr....Ok. Back to my point.)

To be honest, I'm not sure exactly how I feel about having this information about the extreme likelihood of having a nasty post-birth RA flare. I mean, I guess I'm glad to have the warning so that I can try to do something (anything!) to prepare for the inevitable. But, on the other hand, this article and others like it tend to make this flare sound extremely painful and difficult to deal with, and that's really scary to think about. And anxiety + pregnancy = really not a good thing.

To be totally fair, in this article Chaunté Smith hadn't been diagnosed with RA prior to getting pregnant for the first time - she had been perfectly healthy - so the RA symptoms after the birth were a total surprise to her. And I can totally see how a brand new baby could make an RA diagnosis extremely difficult and scary to deal with. 

But I also think it is seriously scary to know that the flare is coming and that there is really nothing I can do to stop it. One thing all sources seem to agree is that the magic R-word will eventually wear off and the RA symptoms will flare - and usually much faster than in Chaunté Smith's case. She got six months, but most articles estimate a matter of weeks. And if I want to breastfeed my baby (which I do) I have to be ready to deal with whatever RA throws at me with almost no help from medicine. And I know that really won't be easy. 

So when people ask me if I'm scared of giving birth I have to tell them that I'm honestly more scared about what will happen after that. I am really trying not to worry about the inevitable too much, but I have to admit that I have been thinking about it a lot lately.

We figure the very best thing we can do is hope for the best, but prepare for the worst. Adjusting to life with a brand new baby is obviously difficult enough all by itself, and since we will likely be dealing with the added complications of a nasty RA flare, APL and I have been working hard on making things as easy as possible for ourselves after we bring baby home - which will give us the greatest chances of being able to breastfeed for a while.

Thankfully both my mom and APL's mom have agreed to take shifts staying with us for a few weeks after the baby comes, and having some trusted help at home (especially from experienced ladies who know what the heck to do with a newborn!) will be a total lifesaver. We've also registered at MealBaby, which is a really cool site that lets your friends sign up to help you out by dropping off meals after baby arrives. And, of course, we're reinforcing our arsenal of heat/cool pads, wraps, and braces for my joints.

In the meantime, APL and I have been furiously researching baby gear to figure out which items might help make things as easy as possible for me when I'm achy and short on energy. We're planning to get a co-sleeper, which is like a bassinet that attaches to the parent's bed, so that baby can literally be within arms reach for feedings during the first few months while I rest or sleep in bed, without me having to even get up. We've registered for what is supposed to be a really great nursing pillow, with the hilarious name My Brest Friend, which will help me support the baby during feedings without straining all of my joints. And, I kid you not, last weekend we spent literally three hours in Babies R' Us folding and unfolding strollers and buckling and unbuckling clasps so that we can find a stroller/car seat combo that will be both lightweight and easy to use (right now we're looking at the Combi Cosmo + Shuttle 33 combo).

So we're doing everything we can think of to prepare for the inevitable post-birth RA flare - and I wanted to share our ideas in case you find them useful! And we are totally open to additional suggestions if you've got them!