my blog has moved!

Hello, friends!

Please note that I have moved my blog to Lifestyles of the Ill and (mostly) Blameless.

Sorry for any inconvenience this may cause you.

PS: My twitter handle changed too. It is now @chr0nicbookworm. (note that the o in chronic is actually a zero).

xoxo

The Ill and the Blameless

When I sat down at the computer this morning, my google reader list was one of the first things I went to look at. As a result, I started my day with this excellent post by @DrSnit over at Dear Thyroid: Chronic Snarkopolist: Blaming the Patient  I suggest everyone go and read that post not only because my response below will make much more sense that way, but also because it’s an excellent piece. I started writing a comment in response, but it got so long that I figured I might as well just write a blog post.

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Being told it’s our own fault (either directly or indirectly by way of phrases like “denied using” or “failed treatment” as mentioned in the article) sets us up for the wrong attitude. It makes us scared to get the help we need from doctors or the support we need from family/friends. Who wants to be told over and over again that they are to blame, that they are wrong, that they have failed? By engaging in behaviors that make their patients scared to visit them, let alone be honest about their life (habits, symptoms, pain levels, mood) doctors have already failed their patients before they even start treatment. They have failed to create an environment where we feel safe enough to be honest and destroyed the doctor-patient relationship. Of course, without that information they can never treat us whether it’s treatable or not. I realize that we live in a world where malpractice reins as king over the risks doctors face. How many times have you overheard the phrase “I don’t want to get sued for killing someone?” come out of a doctor’s mouth? Shouldn’t “I don’t want to kill someone.” be the worst that could happen? But I digress.

There are obviously some people who may have ended up with illnesses because of their bad decisions. Ok, fine. Let’s move on shall we? Focusing only on wrongs instead of on how to make things right as best we can moving forward is pointless. Who is that practice benefiting? Certainly not the patient. Certainly not the doctor. Nobody is perfect, but we are doing our best.

Doctors like to hide behind the fact that this is how they were trained to report information. Does that alone make it the right thing to do? I think not, but that’s just me and just me thinking isn’t enough. This is a change that needs to come from the inside. Something that doctors need to start looking at very carefully. Instead of brushing us off as whiny patients who, since we don’t have their level of education on the topic, clearly know less about it than they do. News flash: many times I’ve had doctors prescribe incorrect meds or order incorrect tests. As it turns out, when you have an illness that doctors don’t see every day doctors don’t always remember everything they learned 10-20 years ago in medical school & residency.

I think one of the things that I have found most frustrating about patient blame is that it comes from loved ones too. It isn’t only the doctors that have bought into this denial and blame game. My mother is always crying about how I’m still sick because I’ve accepted that my illnesses are chronic. By agreeing that they’re chronic, she says, I’ve decided I’m never going to get better. According to her, it’s MY fault that I’m not getting better because I don’t want it badly enough.

A friend once informed me that my life as a chronically ill person seemed like a soap opera. “Lifestyles of the Ill and the Blameless” we joked. She couldn’t figure out why there is so much drama going on all the time. Why must I switch doctors, can’t I just insist that they look into a symptom I’m worried about? Why must I switch doctors, can’t I just repeat myself until they listen? Why must I switch doctors, can’t I just put up with a ‘little’ condescension? If I know I’m doing the best I can then why should it matter if the doctor doesn’t think so? Why does it need to be such a big deal?? I told her the only thing I could: because it IS a big deal! It’s a HUGE deal! Blaming the patient for their illness, for the meds not working, for not being a obedient robot is ridiculous. There are some truly FANTASTIC doctors out there who listen to their patients and work with them to create helpful, supportive care plans. They broke away from the mold of traditional patient blame approaches and learned to work with their patients instead – isn’t it time more doctors started to think about doing the same?

Rheumatologist Updates

Since I forgot to post an update after my last appointment, I wanted to make sure I got the new update up as soon as possible. I switched rheumatologists in February, and I couldn’t be happier with my new doctor. My last rheumatologist had zero social skills and didn’t really listen to anything I was saying. This rheumatologist is very chill and actually listens to what I have to say. (.. and those readers who follow me on twitter will know that I was greatly pleased to see bright coral nail polish on her toes AND finger nails. It’s the small things, isn’t it?)

1. azathioprine

Last februrary we switched from methotrexate (mtx) to azathioprine (Imuran) to see if I could get the same results without the nasty mtx side effects. So far the results have been good, my liver enzymes are normal, and the side effects have been bearable to so we’re sticking with the azathioprine.

2. gabapentin

In February, we also added gabapentin. I was a little nervous about this after all the weight I gained on the pregabalin. The pregabalin didn’t help my pain at all so I’d been weaned off of that by the last rheumatologist. So far, the gabapentin didn’t really help my pain either. It did help my restless legs and it knocks me out most nights so I have less trouble with insomnia. Unfortunately, it also makes me wake up with a hangover and feel drunk and groggy all day. So my doctor stopped my morning and afternoon doses. We’re going to try dropping the night time dose from 600 to 400 (or if that isn’t enough to help the sleep and restless legs hopefully 500 will work). Guess we’ll see how that goes.

3. tramadol

I’ve been avoiding the pain meds as much as possible all these years. I fear pain med addiction. I fear labels like ‘drug addict’ that many chronic illnesses sufferers face and make it harder for us to get the care we need. Unfortunately, the costochondritis has gotten out of hand. It causes enormous amounts of pain. On bad days, I’m stuck whimpering or even crying in bed. The rheumatologist felt along the ribs and freaked out. She wanted me to get on low dose prednisone, but I really didn’t want to get back on the pred. So she gave me a pain killer called tramadol used for fibromyalgia sufferers that I can use when I really need it. It isn’t going to fix the problem, but it might make it more bearable. I’ll let you know how it goes.

4. my poor wrists

I’ve been using this time at home to catch up on years and years of reading list backlog. Well, in between Buffy marathons on Netflix Instant that is. Unfortunately, my wrists aren’t enjoying this as much as my mind is. Last February, my doctor told me to get an ereader. I didn’t. I go through too many books too fast to afford buying the books and libraries still have limited lists of ebooks. This time she put her foot down. She wants me to get an ereader AND to find splints that go around my wrist (but not over the whole hand and wrist). Joyous. Time to do some research on ereaders! Anyone have any advice?

5. sun exposure

As expected, I got in some serious trouble about the tan lines from the wedding memorial day weekend. Oops. I got off easy though because I was wearing my big hat and since I only had a greasy sunscreen it was obvious that I didn’t forget that detail. Still, the importance of avoiding sun exposure was made very, very clear.

Summer Weddings & The Sun

This post was featured in ChronicBabe Blog Carnival #31: Summer Plans

Last weekend I flew out to Tennessee to the wedding of a very close friend. The only thing more beautiful than the service was the bride. I was honored to be invited to a wedding that ran (as far as I could tell) without any major glitches. The only problem? The wedding was outside. Don’t get me wrong, it was a beautiful location and it suited the couple perfectly …… but it was outside without shade. One hour in the sun without shade, as it turned out.

I can’t be the only one with plans that involve the sun. Summer is prime wedding season, plus there are barbeques, picnics, and various other parties. Everything seems to be planned outdoors in the summer. (Especially if you live in the Midwest where summer is short-lived and must be taken advantage of.)

Whatever the event, those of us with lupus need to take special precautions to stay out of the sun. I was very bad this weekend (as far as my lupus and rheumatologist are concerned), but I did my best.

1. SUNSCREEN. I can’t stress this one enough. Sunscreen is very, very, very, very, very important.
2. HATS. I’m hoping that they’re going to make a come back following the royal wedding, but even if they don’t … hats are important for sun protection. I have 3 or 4 of them that I wear. I found one with a lace band and flower for the wedding, but you can easily interchange your ribbons. Check out a clothing store for ribbons and lace to help make your hats part of your summer wardrobe!
3. SHADE. This was not a possibility for me, but if at all possible you should find some shade if you can.
4. PARASOLS. Some elderly ladies at the wedding had these, and I was j-e-a-l-o-u-s!!!! These need to make a major fashion come back. Even if they don’t, I’d get one if I could find one at a reasonable price.
5. COVER YOUR SKIN. I packed a cardigan to wear over my dress. I fully intended to wear it – I had it with me at the wedding. Unfortunately, I suspected heat stroke might be an issue if I added any clothing if I wore it. All the same, try to keep your skin covered. Long sleeved, thin, cotton tunics are a great option as you won’t boil in them!

Does anyone have any other great suggestions as far as protecting yourself from the sun?

EDIT:

Things I forgot or were suggested by my wonderful readers:

6. SUNGLASSES. I don’t go anywhere at all without these. Score forgetting to put this on the list up to brain fog.

7. SUNGUARD. Apparently you can wash your clothes with this and it imparts some sunscreen protection. I haven’t tried it yet, but I will go out and look for it soon.

Fibromyalgia Awareness Day 2011

According to the National Fibromyalgia Association, fibromyalgia affects 10 million people just in the USA alone … and 3-6% of the world population overall. Of those people somewhere between 75 to 90 percent are women. Fibromyalgia involves both chronic pain and chronic fatigue, trouble sleeping, and a number of other symptoms including headaches/migraines. Many of us suffer from “brain fog” and are often forgetting things, which is frustrating to no end. There are so many other symptoms that can be involved like rashes and restless legs.

There’s no cure for fibromyalgia. We are treated with drugs that try to affect the individual symptoms, but they generally just take the edge off. At least for me, the pain is never actually gone anymore. Those are just the physical symptoms. It doesn’t cover the trouble with getting through every day life. Simple daily activities are difficult, chores are a major struggle, and a job is often out of the question. Our families, friends, and spouses also have to adjust to the new family dynamic as we spend much more time in bed and are less able to help out around the house.

One of the most frustrating things about this illness though? Hearing someone tell you that it doesn’t exist. We get told that we’re “just lazy,” that we should “stop whining,” or that we’re “looking for attention.” People think that it’s a disease of “bored middle aged women.” Well, let me tell you, we’re not and it isn’t. We are in PAIN. Our pain is REAL.

It isn’t just the general population that needs educating. Many doctors and other health professionals also don’t believe that Fibromyalgia really exists because it is diagnosed entirely based on symptoms and signs versus distinct tests. It’s hard to convince people that you aren’t just making it up when they defer to the opinion and authority of the disbelieving medical profession. This means it’s that much more important to educate everyone about this illness.

I deal with the endless pain, fatigue, fog and numerous other symptoms of this illness EVERY DAY. So do millions of other people, including number of my friends. People have slowly begun to recognize that fibromyalgia is real. Major hospitals such as the Mayo Clinic have now recognized it. Still, we struggle to convince people every day. I hope that together we can educate people to help them understand what we suffer through.

“Love and Other Drugs”

image from wikipedia

I just watched this movie. It’s about a girl who has been diagnosed with early-onset Parkinsons disease, and is learning to deal with the implications of a life of debilitating chronic illness ahead.

She’s only a year older than me in the movie, so that was something that really hit close to home. Granted, she’s dealing with a different illness, but a lot of the underlying adjustment issues are similar. Most notable, in the movie, was the question of relationships and marriage.

Throughout the movie, Maggie is fighting to not only come to terms with her illness but also the implications it has on her life plans. This means figuring out how to deal with the illness and also how to deal with any future romantic relationships. This struck home for me. It’s something that I’ve personally been dealing with a lot lately. (I’m sure my poor friends @fragileannie and @kimbellybull could testify to this, as they are the ones who usually have to listen to me.)

All the symptoms, so many meds at so many times during the day, plus the doctors appointments and lab draws. Then there are the cancellations on previously made social commitments and the major changes to life plans post diagnosis. I mean, I can barely even manage to deal with my illness myself. My parents are clearly still coming to terms with my new life too.

With that in mind, how can I ask someone to sign up to deal with something that I can barely deal with myself? Aren’t relationships hard enough without all these extra burdens? It isn’t easy to watch someone live with pain and suffering. Is it really fair for me to ask someone to put up with all this extra pain?

Of course, being stuck at home doesn’t make it easy to find someone worth dating. As @fragileannie pointed out the other day, what I need is someone who likes to stay home a lot so he won’t be fussed that I need to be home a lot. Too bad both of us being home a lot makes it really hard for us to meet. Heh. The point is, though, I’m not really sure I’m even actively looking anymore. I’m not convinced it’s fair to the other person. I know enough people who struggle with their spouses/life partners/boyfriends/girlfriends/etc acceptance of their illnesses and limitations. That being said, I know enough people with chronic illnesses who do have happy, supportive relationships. So it’s possible. I guess this is something I’m still struggling with myself, but it was really interesting to watch this movie and watch how Maggie dealt with this issue.

Holistic M.D. Appointment

So my parents have been after me for months to see this holistic MD that is treating a family friend. Unfortunately, he wasn’t taking new patients. I called for an appointment sometime in early January. They told me his next appointment would be in August. Finally, our friend helped us to get an appointment.

This doctor is focusing on cross-cultural medicine and integrative medicine. I was told that he has a big focus on gastrointestinal bacteria and knew a lot about Eastern medicine. I was assured that he won’t take my off any of my allopathic medicines. (I told my parent’s I don’t mind any additional treatments, but I’m not comfortable with stopping the allopathic meds.)

I will be the first to admit that I went into the appointment rather sceptical, but willing to listen to what he had to say. The appointment went on for 1.5 hours!! He asked A LOT of questions – most of them about the puking that’s been plaguing me and my GI system in general.

Then he gave me some tests to take at home. Now, peeing into a cup and pipetting that into some test tubes is truly not too bad….. but pooping into a bucket, scooping that into a tube… and then, as if that wasn’t gross enough, stirring and shaking that tube. Three days in a row. Yuck and double yuck.

Still, I did what I was told and mailed the specimens into the lab somewhere in the North Carolina. It will take awhile to hear back though, so I guess we’ll see what he has to say when he gets the results… that’s probably when things will get interesting.

In the meantime, he has sent me for an Ayurvedic consult.

Has anyone else seen a holistic MD?? Thoughts? Experiences? Advice?

Lupus Awareness Day in the USA!

The other day in the gym locker room, I overheard a conversation between two elderly women. The first was trying to convince her friends to attend a fundraiser (I missed what it was for). Her friend replied, “There are so many CAUSES now. What are all these diseases? Do they really all need funding? There can’t be that many people suffering if we don’t know about the disease. Can’t you throw a fundraiser to support some sort of cancer? At least I would know that my money is going to a real disease not a hoax.”

I was shocked and troubled by this exchange. Just because someone hasn’t heard of a disease doesn’t mean that it doesn’t exist. Just because someone hasn’t heard of it doesn’t mean that only a few people have it.

It’s Lupus Advocacy Day here in the US… and this is why we need it.

According to the Lupus Foundation of America:

• approx. 1.5million people in the USA alone are fighting lupus. About 5 million world-wide (!!).
• 90% of lupus fighters are women, usually 15-44 years old at diagnosis

Clearly, this is not something that’s affecting only a few people. Moreover, 70% of cases have systemic lupus, and 50% of systemic cases have hit at least one major organ (heart! lungs! kidneys! brain!).

We are being treated with steroids and antimalarials because this is not a disease that get’s a lot of research focus. We haven’t had a new medicine officially approved for lupus for FIFTY years!

It’s Lupus Awareness Day. Please contact your politicians!! Awareness is important. You can do it quickly and easily right here.

it ain’t over ’til it’s over

Last night, I went to a 16^th birthday party. There was cake, a live band, a cash bar for the adults, and lots of food. There was only one thing missing: a birthday girl. The little princess died 8 years ago of cancer. So for what would have been her 16^th birthday, her mom threw a benefit. It was a lovely night, and hearing stories about her brought back a lot of suppressed memories. The little girl was like a sister to me, and her death was devastating. This little angelic girl, whose only complaint was that her hair was falling out, who was always ready with a smile and “how are YOU?” was gone.

I think everyone has a moment when they realize that life just isn’t fair.  Then they have a moment when they accept that fact. For some people, that’s the same moment. For me, the realization came when she was diagnosed with leukemia, but the acceptance didn’t come until she died. I guess until that point I kept thinking that something would set the universe right and she’d be cured and grow up to be an amazing person … but nothing did.

The thing is, by 8 years old, she’d already taught me one of the most valuable life lessons I’ve ever learned … life is short. Ok, that was an obvious one given the story, sorry. Here’s the real one: you can’t change some things in life. Some diseases are handed to you without provocation, and you’re stuck wondering “why me?!” Sooner or later you’re going to die. Usually, you cant control when or where or how. What you can control is this: What are you doing now? Who are you making happy? Whose life are you improving? It’s easy to wallow, but it doesn’t help anyone – not even you.

This doesn’t mean that you have to donate thousands of dollars or hours of service. Sometimes, all it takes is a compliment, a hug, an anonymous act of kindness, or even just a heartfelt smile. It ain’t over ‘til it’s over, so what are you doing to make the most of it?

2010 in review

thank you to my readers!

 

The stats helper monkeys at WordPress.com mulled over how this blog did in 2010, and here’s a high level summary of its overall blog health:

The Blog-Health-o-Meter™ reads Wow.

Crunchy numbers

A Boeing 747-400 passenger jet can hold 416 passengers. This blog was viewed about 4,000 times in 2010. That’s about 10 full 747s.

 

In 2010, there were 37 new posts, not bad for the first year! There were 10 pictures uploaded, taking up a total of 2mb. That’s about a picture per month.

The busiest day of the year was June 22nd with 112 views. The most popular post that day was One Lovely Blog Award!.

Where did they come from?

The top referring sites in 2010 were chronicbabe.com, twitter.com, gradstudentwithlupus.blogspot.com, fragileannie.com, and healthfitnesstherapy.com.

Some visitors came searching, mostly for grad student with lupus, all you can do is try to know who your friends are, medical students with lupus, trick or treat pranks, and all you can do is know who your friends are.

Attractions in 2010

These are the posts and pages that got the most views in 2010.

1

One Lovely Blog Award! June 2010
6 comments

2

Who Am I? June 2010
5 comments

3

through the looking (or sometimes bulletproof) glass June 2010
7 comments

4

what your doctor couldn’t tell you … June 2010
10 comments

5

it’s supposed to be a “doctor-patient” not “doctor-disease” relationship June 2010
9 comments