People don’t like to acknowledge the ill. It’s like it goes against nature, and society wants nothing to do with it. Evolutionarily, we’re weak – and only the fittest survive right? But does that really mean that we’re to blame for our illnesses? No, but it does mean that we have to battle with insurance companies to make them believe we need and deserve the coverage we require. We must battle with government agencies for disability coverage – which means that we then have to battle with the people who think that coverage like that supports lazy people who refuse to do a decent day’s work. Suddenly, it becomes a big political issue and the suffering people who sparked it are forgotten by the side of the road.

The idea that ALL ill people who request painkillers are drug-seeking addicts is preposterous. Unfortunately, worries about malpractice suits or ruined professional reputations mean that many doctors are too scared to prescribe painkillers. Which means that suddenly we are even battling with our doctors for the care that we need. I have friends who have been told by their doctors that although the doctors recognize that the patient needs the painkillers, they are unwilling to prescribe them. Doesn’t this sort of defeat the purpose of the entire medical industry?

All of this often leads to issues of people being unwilling to admit that they take them at all. And, so, I must admit that I have also been needing painkillers lately. By lately I mean since last Spring, and I must admit that a blog post about that change has been half-finished since then. I’m somewhat ashamed to admit that even knowing that the stigma is wrong, I still fell prey to its force. Who wants to be judged by friends, family and doctors alike? Who wants to see pity on their faces? Be told that they’re weak? I sure as hell don’t know anyone like that.

People see us as weak. As if by taking the pills, we have given up. We aren’t fighting for what we want. To that I can only say that if you are a person who can survive such excruciating pain 24hours a day without needing pain killers, then all the more power to you. Unfortunately, my body doesn’t work that way. Other people say that we rely to much on medication and not enough on natural methods. I can’t speak for anyone else, but I can say that I meditate, I do yoga, weight training and aerobic exercise. My mother performs reiki and massage for me. It’s just not always enough.

Painkillers are about more than pain. They’re about quality of life. I can’t say that I take the med every single day – or even every single week, but I can say that it makes a tremendous difference when I do take it. Some days, it just isn’t possible to manage without the help, unless I aim to spend my life whimpering in a ball on my bed. Believe me, I don’t. If the only way to prevent that, and to keep some purpose and direction in my life is to take a painkiller sometimes, then I’m ok. Because here’s the rub: it’s not like we want to take the painkillers. It’s not like we say “Oh, hey, let me go talk my doctor into prescribing a painkiller for me. that sounds fun!” We discuss our pain with a doctor because we were miserable and unable to live our lives due to the excruciating pain. Nobody wants to live like that, and so far this is the only way that society has found to help us.

Of course, the one pain the painkillers can’t relieve is the pain caused as a result of the stigma they carry.

People with lupus and fibro are always hearing how important exercise is to manage our pain and keep flares in check. Ok, ok, we get it. Exercise is important. Perhaps doctors don’t get how hard it actually is to get that exercise in though. Actually getting a regular workout is incredibly hard when you’re always exhausted and in constant pain. It takes an awful lot of willpower to get past those two major concerns. It’s something that I’ve really been working on over the last year and a half. Having lupus means that there is a limited amount of time that can be spent in the sun. this is unfortunate as a lot of exercise promotion efforts focus on the idea that it canbe fun to go have fun running around outside. Nevertheless, I have found a few (indoor) activities that seem to work for me – maybe other people will find them helpful too.

1. Yoga

This is probably one of the most important things that I do. It is incredibly helpful with relaxing and stretching my joints. It also seems to do wonders for my stiff and cramped muscles. I definitely notice a huge difference when I miss yoga too often. I try to do yoga 2-3x/week. If you don’t have access to a yoga studio, I know people who do yoga at home from exercise DVDs (I think Netflix also has some on instant watch) or even just do some basic stretching.

2. Gentle Walk/Jog on an Elliptical Machine

I find that walking on a treadmill or outside can cause a lot of knee and hip stiffness the next day, probably due to the impact of my feet hitting the ground/treadmill. However, an elliptical machine eliminates this issue for me. Gentle aerobic exercise 4-5x/week really helps to relieve my muscle stiffness and reduce fatigue levels. ( I do sometimes go for a walk around the lake in the summer with my family – equipped with a hat and lots of sunscreen, of course!)

Swimming would be even more ideal, but unfortunately my gynecologist doesn’t let me swim because I’m prone to yeast infections with my immunosuppressants. If you are able to swim though, it’s  the best of the low-impact aerobic exercises. Some of my friends go for walks with spouses/partners/significant others or walk their dogs regularly.

3. Personal Trainer

I have been very lucky to find reasonable, flexible personal trainers who have experience, training and schooling working with physical therapy and recovery. This has been very helpful in helping me to gently build up muscles around my joints, which helps me to take pressure off of them. We have also been working on strengthening my lower back muscles which is important when I spend so much time sitting and/or sitting up in bed. It helps that my trainers have been very understanding about my illness and its limitations. They get that I sometimes have to cancel last minute. At this point, they can also predict that some days won’t work for me based on the weather that day. They are also very understanding about my limited budget – and don’t push me to buy too many sessions. In fact, we split the 2 sessions/month into 4 30min sessions which is more than enough at one time.

If this isn’t a feasible option for you, you might want to see if your insurance will cover some physical therapy. A physical therapist should be able to put together some strengthening exercises for you to do.

In talking to my friends with varying chronic diseases, it seems that different people have found different levels and ways of doing these things. Not being able to go outside may be a restriction for people with a lot of illnesses, but for people with lupus it’s all the same. Except, of course, that the cold aggravates stiffness and pain for many of us. Trying to keep up with these exercises really helps me to balance out the effects of the cold weather. Rain in the summer hurts us as much as the shine of the sun too. Basically, we need the exercise – regardless of the weather (most of which hurts us anyway).

I’m not a huge fan of resolutions. I think most of them get left by the wayside by the time February rolls around. However, I do have one big one for this year: trying to keep track of which meds and supplements I’ve run out of. Or, rather, keeping track of which ones are running out and making sure I can restock them before they do.

In addition to the list of prescription medications that my rheumatologist prescribes for me, the holistic MD that I see has me on a very long list of supplements. I basically keep track of them by keeping a list of what I need to put in my med case for each med time.

My insurance makes me fill my prescriptions in three month intervals through a mail order service. This means that it takes a good week to receive my meds from the time that I request a refill. Longer if I’ve run out of refills and they have to call my doctor’s office. To get my supplements, I have to go to a store that’s almost a 40min drive away. That’s a long way away for me, an exhausting drive that I have to plan for.

What I have failed to keep track of is when I run out of these meds and supplements. I keep thinking that I’ll deal with it later. Or that I’ll go to the store when I’ve run out of a number of them so I can pick them all up at once. Yesterday, I realized that I’m out of more than 75% of my supplements. Can you say ‘oops’?

What I really need to do is pay attention when the bottle is heading towards empty and get myself to the store/order a refill from the mail order. So that is my goal for this year: to keep track of my meds so that there aren’t any days where I miss my prescription meds because I ran out and haven’t gotten my refill yet – and that there isn’t more than a week that I’m out of any given supplement.

Last night I found out that one of my very first twitter friends @Beautiful1Amy (@cute1amy before she changed it) had passed away. She had been in the hospital for awhile now, but I still spoke to her fairly regularly and never saw this coming. To say I was shocked and devastated would really be an understatement. I spoke with her at least a few times a week. She was always there for me in good times and bad. She always had a kind word, a saucy comment, a book recommendation or a word of advice and I can’t imagine what it will be like without her. She was on 23 years old. Far, far too young to be gone. My life, like my twitter stream, will never be the same without her. I can only take solace in the fact that at least her pain and suffering have been relieved now. Goodbye, dear Amy, thank you for being such a wonderful friend.

For all that I get riled up when people (*cough* Dr. Phil!) say that lupus is no big deal, isn’t dangerous, isn’t real I sometimes find myself playing it down. Ok so some of that is probably a coping response to the stress. Still, I occasionally miss a med time or knowingly overdo it and I say “oops” as if it’s no big deal. Sometimes when you’re sick all the time it’s easy to forget how dangerous that illness can be, and how important it is to be careful. Or, even if you’re careful, how threatening the illness can be on a whim of it’s own. I find myself chastised and resolved to be ever more diligent against monster that is lupus.

In loving memory of Amy. RIP.

Today is World Arthritis Day, and I am taking part in a blog carnival type of thing: World Arthritis Day 2010: Global Awareness Event hosted by the International Autoimmune Arthritis Movement (IAAM).

Every lupus patient has a different story to tell. It’s a disease that varies so much from person to person that sometimes it almost seems like a completely different disease. Is it affecting the kidneys or not? Is it causing fevers or not? Do you have rashes? Which meds are you on? Are they causing grogginess or nausea? I guess it shouldn’t be a big surprise, then, that onset stories vary immeasurably as well.

When I first got sick, I was 16 years old and had been exceedingly healthy my entire life. I didn’t have any history of any illnesses except recurrent sinus infections and the occasional cold. I was reasonably fit and within what was considered a healthy weight and BMI range.

It started with nerve pain in one half of my mouth – right along my teeth. Then that nerve pain spread to my arms and legs and suddenly the doctors were search for brain tumors and multiple sclerosis. I was bounced around from doctor to doctor: infectious disease specialists, neurologists, on and on. One psychiatrist told me it was all in my head and that there was nothing wrong with me. He gave me an antidepressant and sent me on my way chastising me about my stress levels. They figured it out eventually – but it took 6 months. One round of prednisone later, I was in “remission.”

This meant that when it flared 5 years later it was like going through the onset investigation all over again. 3 months after I caught a terrible viral bug that I never really recovered from, they finally figured out that it was my lupus acting up. Of course, they sent me though a battery of blood tests and full body scans again first.

There are a few triggers that we know can cause lupus flares like high stress levels and UV light, but what triggers initial onset is still being researched. There have been a number of reports suggesting that obesity may make it more likely to trigger an autoimmune disease like lupus, but not all experts seem to be convinced of that. I can’t say that I am either. It will be interesting to see what more research reveals. The idea of have a genetic predisposition that gets triggered (again with the elusive triggers!) also seems to be a common idea.

Onset is a scary experience – you don’t know why you’re sick, what’s happening to you, what caused it, or even if whether it’s curable. Most of the time, the people around you (doctors included!) are confused and unsure about what to tell you. Finally getting a diagnosis ends up being quite a relief but then you’re stuck trying to figure out how to carry on with the rest of your life. More research into triggers is most definitely needed.

PS: Wondering about the numbers in the title? It’s explained here: World Arthritis Day 2010: Global Awareness Event 

Faith is one of the topics that seems to come up a lot in blogs and twitter conversations. How having a chronic illness has caused people to lose faith in religion/God. Or how faith in religion/God is something that gives people strength to keep fighting that illness. Or how people who were formerly agnostic has found their way towards one of those two options as a result of their illnesses.

Conversations about religious faith aren’t restricted to the ill, of course. One of the most frustrating comments for many people, myself included, is being told “you need to have more faith in God.” Or some variation thereof. People have been told that if they had more faith they’d be less ill (or cured!) or that if they had faith in the “right/true” religion then they wouldn’t be punished anymore and could heal. These are obviously more extreme comments, but I think you get my point. I’ve blocked more than one tweeter who started preaching at me when my response to the “do you have faith?” question wasn’t what they wanted to hear. Now, before I get a slew of angry comments, I am not judging anyone for their faith. If it helps them, or even if it doesn’t, that’s none of my business at all. If it helps you – more power to you! I’m glad you’ve found something that supports you and helps you through your life. …. But I don’t want to hear you preach at me about it, no offense.

Comments about faith aren’t restricted to religion either. Do I have faith in my doctors? Do I have faith in my medications? I’ve even been asked if I have faith in my body’s ability to heal/cure myself. (This was followed by the comment that I was still plagued by a chronic illness because inadequate faith in my body’s ability to heal meant my body would never heal.)

There’s one question that I’ve never been asked, though: whether I have faith in my own ability to deal with the mental and physical strain of a chronic illness. I know that faith in religion/God is one way that a lot of people deal with this strain. Regardless, I think what a lot of people need is faith in themselves. Faith that they are strong enough to deal with the constant pain, appointments, meds and lifestyle changes. Because let’s face it, at the end of the day you are the one who takes your meds multiple times a day, who knows when to push further and when to rest, who fights food cravings/aromas/tantalizingly arranged platters because you know they aggravate your illness, and, ultimately, you are the one who knows what it’s like to have your illness.

Even with the same diagnosis, everyone’s experience of an illness is different. Anyone who is judging you for your faith or lack thereof is doing so on the basis of his/her own experience, not yours. It doesn’t matter what he/she thinks. (Even if it’s hard to recognize and acknowledge this and often even harder to actually tell someone so when it’s a close friend or loved one.) It will probably never be easy to do, but no matter what else you have faith in, have faith in YOU.

A little over a year ago, I was finishing up my first year of a graduate program in a country near the equator. My lupus flare was out of control and the doctors thought that the heat, UV light and humidity were inciting repeated flares. I was forced to leave my graduate program and move back to the states.

I have spent the last year trying to get back on my feet. It took ages to get off of the prednisone, try to figure out a better medication plan, and then try to get my life sorted out. (I’m still working on that last one.) It’s been a really rough year, and I had a hard time putting it all into coherent text. There are a number of medical changes and experiences that I have been meaning to write about – hopefully I’ll get those posts up soon. In any case, I created a new twitter handle and blog address because I felt that focusing on my lost grad student life (and it’s resultant career path) were dragging me down into the past. It was time to look to the future, so here we go…

A special thank you to my twitter friends who have been endlessly supportive this past year. I could never have made it through the year without your love.

PS: For those of you who are wondering, the new blog title comes from my last blog post.

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?

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.

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.