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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.

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.

Trick or Treat? The Pranks of Sir Prednisone.

This post was featured in ChronicBabe Blog Carnival #15: Trick or Treat.

 

Yesterday I experienced something new. Not the sort of exciting and new event that you would like to cross of your “bucket list.” Oh no, this was the sort of thing that should be on the list of “embarrassing things that you hope will never happen” to you. Ok, maybe I’m being a little melodramatic. After all, there are many worse things that could happen as the embarrassing stories section of any Cosmo magazine will tell you. (Or, more reliably, probably most people.) So why am I so upset about this particular event? Well, I guess because it is caused by an event that I am so happy about.

There is no end to the frustrations of taking prednisone: increased appetite, osteoporosis, weight gain, moon face, etc, etc, etc. What people often don’t talk about, though, is that prednisone withdrawal is no pretty sight either. To finally get off of a prednisone taper is an exciting event – it’s splendid to be free of it’s side effects. Sir Prednisone, though, is hardly the type to just let you shimmy down the side of his holding tower on your hair like Rapunzel’s prince and scamper off into happy oblivion. Oh no, he makes it brutal. The mood swings are ridiculous – I mean, really, who tears up at the end of NCIS when they get the bad guy? It’s almost comic except that it’s so frustrating. Then let’s add in the debilitating fatigue and the horrible joint pain. My favorite withdrawal symptom, though, is the nausea and vomiting.

Which brings me to my embarrassing moment: forceful, projectile vomiting in a restaurant bathroom. I mean the kind of puking where you don’t even manage to kneel in front of the toilet because a slight bend at the waist and suddenly it begins… and then repeats 5-6x in fast succession. Oh and then I performed that whole routine again when I got home. Except that I had to get out of the shower that time – with the  shampoo still in my hair. That wasn’t my greatest moment. Just in case anyone missed it, I gave a final midnight show. Of course, at that point it was just acid coming up. Beautiful visual isn’t it? To all the empaths out there … are your noses and throats burning yet?? Hey universe, I would like to never do that again, please. Thanks. Curse you, Sir Prednisone. Can’t you just let us go peacefully?

Sunday Breakfast Club: “Where’s the love, y’all?”

During the two years that I was studying for my masters degree, I would meet two of my closest friends every Sunday morning at a local coffee shop. We’d spend an hour chatting, venting, gossiping, and catching up on our lives (or lack thereof) over bagels and coffee, before the conversations would inevitably tangent off onto random topics. I miss those chats – and the insights into my friends I’d gain through them.  So I thought I’d try to restart something along those lines on my blog. A chance to hear more from my readers… at first, I was trying to decide if I wanted something consistent: quotes/sayings, song lyrics, random current or pop culture events…. But I think it will be more fun, more free to mix it up. Just whatever I’m dwelling on at the moment. Hope you all have as much fun with it as I do.


A special issue Sunday Breakfast Club entry, one day early, in memory of all those who died on 9/11.


As today is the anniversary of the September 11 (9/11) attacks, I have been giving a lot of thought to how the world has changed since then. In the aftermath of this tragedy, I feel as if the world has become disjointed. Or, perhaps, it’s just that I am more aware of the seams between the world’s puzzle pieces now. Nevertheless, nine years later, we are still very much in mourning not just for the people who wrongfully died that day, but also for the innocence lost. … but what have we learned from this calamity? We have people threatening to burn Korans in a country founded on the beliefs of religious freedoms. … but I digress from a point that I haven’t even made yet: this lack of acceptance may or not have been so pervasive before 9/11, but it surely hasn’t gotten better since then… and it extends far beyond the realm of religion and politics. Many chronic disease sufferers would agree that it seems to be omnipresent in the medical world.

Maybe you remember the “Where is the Love?” song by the Black Eyed Peas and Justin Timberlake that came out a year or two after 9/11. Or maybe you don’t. It was, in contrast to the general merriment-driven attitude of most of their work, a pacifist plea. Debates about political, religious and moral convictions aside, I think their point is valid:

Yo’, whatever happened to the values of humanity

Whatever happened to the fairness in equality

Instead of spreading love we’re spreading animosity

Lack of understanding, leading lives away from unity

(…)

Where’s the love, y’all?

Where is our love for each other? If not love, then why can’t we at least muster up some acceptance and attempts at understanding? Maybe the question in this situation would be more appropriately phrased “Where is the empathy?” or “Why is there so little understanding?” Why are patients with medical histories documenting their years and years of painful existence being turned away as drug-seeking addicts? Why are the doctors who should be taking care to figure out what causes little understood diseases like fibromyalgia instead treating patients like whiny women who are just looking for some attention?

We used to just lock people away when we didn’t understand conditions like depression or bipolar disorder. It seems like an outdated notion, doesn’t it? Now that science has figured out some of the underlying biology, we use counseling and medications to help these people. The thing is, things haven’t changed as much as we like to think they have. Sure, we don’t lock up people with fibromyalgia. Instead we just treat them like societal outcasts. Doctors say the condition doesn’t exist, and without their validation of the disease society rolls its eyes at the people who are suffering.

As the population of people fighting fibromyalgia becomes more vocal and ads for drugs like Lyrica that are aimed at fibromyalgia increase, the topic rises closer to the forefront. We aren’t going to sit back anymore and let our doctors tell us, however indirectly, that we aren’t actually ill. A doctor treating patients with illnesses like fibromyalgia requires both signs (objective, observed by the doctor) and symptoms (subjective, what is experienced by the patient) to properly treat the patient. As in they can’t do it without us. After all, who would they be treating? Fatigue and pain are symptoms – and as far as I know they haven’t figured out how to measure what we perceive without our input. So why are we battling with these people who are supposed to be caring for us? Doctors are supposed to help those in need of medical treatment, but instead we are being blown off. Where is the empathy and understanding in that? Where is the commitment to healing (or at least alleviating suffering) that their profession was founded upon?

9/11 was a horrific tragedy. We are right to be mourning the loss of these people. … but why can’t we remember these people by trying to change the mentality that leads to events like these. A focus on an “us” vs “them” mentality, doesn’t really get us anywhere. I’m not delusional. I’m aware that reaching that kind of understanding on that kind of scale is a remote possibility, but we have to start somewhere. Why can’t that somewhere be in the doctor-patient relationship? As we fight wars overseas, let’s not forget that there are people battling for their lives at home too.


Sometimes a Whine is a Good Thing

There is a lot of chatter that goes on in the Twitterverse in which the many chronic disease sufferers live online. People use it as a forum for different reasons. Some use it to hear from people who are suffering from similar situations – common circumstances, advice, etc. Others take that one step further and look to interact with those people, to make friends and speak with people who can say “I understand” and actually do.

There is, as is understandably the case, a large amount of what some may term “whining” that goes on in such conversations. I beg to differ. These are trying illnesses that we deal with daily. Incessantly. From the time we wake up until the time we fall asleep – well, if we even manage to fall asleep at all, that is. It’s frustrating. It’s exhausting. We post these tweets because they help us get through the day. To function as best we can in the “real” world of people who don’t understand. Which is why we turn to the people who know what we mean when we post those tweets: the people who are posting similar tweets.

Now, as best as I can tell, much of the argument (often expressed by way of the private “direct message” feature) against such tweets is a complaint that we don’t get very far by posting them. Perhaps people think we take too much refuge in these tweets, too much solace in something that might not affect the “real world” interactions we are invariably forced to take part it. Again, I beg to differ. Sometimes venting our frustrations on blogs and twitter keep us from frustrating people in the “real world” with complaints that they don’t understand. It’s not just about their understanding, it’s also about being a burden. Many of us feel a lot of guilt about the constant demands we put on our loved ones: doctors visits, chores we can’t do, money, and so on. Constant whining seems like one more thing for them to bear, and another reason for them to feel bad for us. Or, as is more prone to upset and induce guilt in my case, to worry about us.

Still, I do think that there should be some efforts made to help those in our “real world” lives understand what we are going through. After all, it seems rather self indulgent to go on in a woe is me nobody understands me vein of thought without at least trying to fix that situation. … but that is rather more easily said than done. Some people fail to understand no matter how many times we try to tell them about it. I’m not ashamed to admit that sometimes I just don’t feel that it’s worth depleting my limited energy stores to educate them.

Frankly, I don’t think anyone has a right to tell me that I’m whining too much – or to tell anyone else that. After all, that is the joy of the internet, is it not? We can choose who we want to interact with. Some people support others by joining in the necessary venting of frustrations, others support with reminders of strength and “I’ve got your back” attitude, still others provide jokes, quotes, or anecdotes. At the end of the day, we interact with the people who provide us with the right mixture of those things – and we try to do the same for them. That is the point of these interactions. Sure, sometimes it might be more helpful to remind ourselves of our strength, but a lot of times I just need to vent my frustrations and talk to people who won’t judge me for doing so.

I do the best I can to be supportive and (dare I say it?) inspirational … but I’m just one girl, who is fighting hard to stay afloat in a sea of constant pain, fatigue, and disappointment. I can’t be upbeat all the time, nor should I be forced to be. I have enough stress and pressure and pain and so on to deal with without adding this layer of judgment. Of course, it may well be that those whining about the whining (*cough*) are annoyed by those tweets because they are just having a bad day themselves. So I’m choosing to shrug off these comments and criticisms that I have received. Take the whines for what they are – a necessary interaction for some. Or choose not to interact with those Twitter users. The choice is yours, fellow whiners, the choice is yours.

Selena Writes: A Letter to the Healthy People In My Life

Oh My Aches and Pains! — Selena Writes: A Letter to the Healthy People In My Life. Monday, August 23, 2010.

I DID NOT WRITE THIS LETTER!  For the original, please follow the link above.  Many, many thanks go to my wonderful friend Selena (@selenamki) for allowing me to share this beautiful letter with my readers!

Dear Healthy Person In My Life,

I live with chronic illnesses: fibromyalgia, myofascial pain, thoracic outlet syndrome, dysautonomia, chronic Hepatitis C infection and type 2 diabetes.

They are called chronic illnesses because currently there are no cures for them.

Without a cure, these chronic illnesses will be a part of all my days.

The only thing I can do is manage my chronic illnesses.

Managing my illnesses takes a team effort between my doctors, my supporters and myself.

The most important way I have found to manage my illnesses is through self-help techniques (like pacing, planning, resting, asking for help, setting limits and saying no.)

Managing chronic illnesses is like having a job, except I work 24 hours a day, 7 days a week without pay or benefits.

There is no vacation, no escape from chronic illnesses.

Having chronic illnesses means that my life has been forever changed.

For example, I can no longer remember what it feels like to have a day without chronic pain or chronic fatigue.

Having chronic illnesses doesn’t mean that I am a bad person or did something horrible; they are not a punishment for past sins, weak character or lack of action on my part.

Having chronic illnesses doesn’t mean I can’t do anything, but it does mean that there are some things I can no longer do and changes the way I approach doing everything else.

Having chronic illnesses means that I will disappoint you with my lack of ability to be an average, normal, healthy person.

You may feel frustrated, angry or upset with me–know that I feel all those emotions and more when faced with my physical limitations.

Know that my goal is to live my best life despite chronic illnesses.

Know that I have not given up hope that maybe one day things will be better for me.

Until that day, managing my chronic conditions has to be my number one top priority.

The best ways you can be there for me and back my efforts to manage my chronic illnesses are:

  1. to love me
  2. to listen to me
  3. to believe me
  4. to support me
  5. to help me
  6. to respect my limitations
  7. and to be patient with me.

Thank you for reading my letter.

Sincerely,

Selena

what your doctor couldn’t tell you …

This post was featured in ChronicBabe Blog Carnival #7: Tips for brand-new ChronicBabes.

So you’re newly diagnosed with a chronic illness. I’m sorry to hear that..

You’re (probably) relieved to have some sort of diagnosis finally delivered… and (almost certainly) freaking out and scared about what it is and what it means for your life. Chances are, your doctor has sent you home with pamphlets of information, websites to look up, and a pharmacy’s-worth of confusing prescription drugs. They probably warned you what to expect in terms of disease symptoms and medication side effects  …

… but there are some “side effects” that your doctor couldn’t tell you about, because they aren’t in the textbooks … these are some things that I wish someone, anyone had told me. This list isn’t intended to scare you, but I’m also not a big fan of sugar-coating. I guess that should be #1 on the list: you learn to deal with more crap that you don’t want to hear than you ever thought possible. And you will survive that. There will be days when you think you’re maxed out, but you will find that you are far stronger than you thought you were.

I started with the lifestyle things because I think it was the hardest stuff for me to deal with. I included some more practical things at the bottom of the list that I think are really helpful too.

  • “Lucy, you’ve got some ‘splaining to do!” And it will not be as much fun as Lucy makes it seem. It will be incredibly frustrating. Most of your friends and maybe even your family will not understand what you are going through. They wont understand why you have suddenly disappeared from the world – well, their world anyway. They won’t understand why you just can’t get out of bed to see them. Or why you keep cancelling on them. They won’t get why you keep insisting that you’re sick when you look just fine. After awhile a lot of them will give up and slowly wander away. (I’ve written a couple of posts about it, and it seems to be a pretty universal problem in the chronic disease world as far as I can tell. I’ve heard it called “disappearing friend syndrome.”) People find their own ways to cope with this situation. Here are a few that have worked out wonderfully for me:
    • Try sending people a link to The Spoon Theory, it helps a whole lot (but only if they take the time to read it).
    • Join the chronic disease community. We are all over Twitter, the blogging world, etc. Check out http://www.chronicbabe.com. I can’t begin to tell you how helpful everyone has been in my life. (Ok, maybe I can.) Obviously we can’t replace those friends, but a few new friends doesn’t hurt. It really helps me to talk to people who are going through the same pain and frustrations. It took me a long time to be willing to do this. I had a hard time identifying myself as a “sick person,” but somewhere along the way I realized that being part of this community doesn’t mean I have to identify myself that way.
    • Learn when to battle. I used to think every friend was worth fighting for. Maybe they are, but I’m sorry to say I don’t have the energy anymore. You will learn to figure out which friends are neglecting you because they try but don’t understand, and which ones just can’t be bothered. It sounds cliché, but your true friends will stick by you. You will need them. Everyone else, well, [choose your expletive of choice here]…
  • Guilt. Expectations can be a royal pain. Even in perfect health, living up to all the expectations people have of you – and you have for yourself – is not an easy task. When you have a chronic illness, they might be even harder to attain. There’s a lot of guilt involved. I feel like I’m letting down my friends, my family, and most of all myself.  It’s frustrating that you can’t do what you want to do when you want to do it anymore. I don’t have any good advice on this one –I’m working on dealing with it. It’s hard.
  • Free-time is a questionable commodity. Sometimes you will just sleep and sleep because you have no other choice. You won’t always be able to get everything done that you want to. Of course, sometimes you will get tired of sitting around in bed or your favorite comfy chair … suddenly you will have too much free time on your hands. (Yes. It’s possible. Who knew?) But that doesn’t mean you’ll be able to spend it the way you want to. As such, your hobbies may change. Embrace it.

I hope I haven’t horribly depressed you. It certainly wasn’t my intention, but I really wish someone had told me that these things can happen. I couldn’t figure out why my friends had disappeared. I felt like I was doing something wrong… I didn’t realize that these were common occurrences. I hope this is useful for you. If you have any questions or need someone to talk to, please feel free to contact me. gradstdntwlupus(at)gmail(dot)com or @gradstdntwlupus

Practical considerations:

  • Buy a weekly pill box. Maybe one that has more than one space per day if you have meds at different times. The one I got at Target has morning & night spaces plus it lets me pop out each day separately which I find incredibly helpful. Also useful: the little, flat pocket-sized pill holders for when you want to just slip in a couple of meds.

Set aside a time each week to fill in all these boxes. You don’t want to be going through all those different medications at each dosage time. It eats up your already limited time, you’re likely to make mistakes, and if you’re very tired it makes it a heck of a lot harder to take your meds.

  • Make sure you are comfortable in your bed and your room. You will probably be spending a lot of time in it. You’ve probably already experienced this. It tends to get depressing if you’ve got springs digging into your back or your walls are all white, etc. This sounds silly, but I didn’t realize how important decorations and such are until I started spending days at a time in my bed.
  • Take a good look at your wardrobe. Chances are that you have been prescribed meds that make you gain weight. You might end up gaining and losing weight as your meds change  and as your eating habits change to deal with the medication side effects (more hunger vs upset stomach, etc). Slightly stretchy waistbands and looser shirts help you to adapt to those changes so you don’t end up with a closetful of things you can’t wear. Try to buy things in mixing and matching sets, it helps your options a little. It’s tragic, I know.

If you have been diagnosed with rheumatoid arthritis or lupus, chances are you are going to have deal with joint problems. There are a couple other things to take into account: buckles and buttons. Swollen joints in your hands will make buckles and buttons hard to work with. Especially in the mornings when you’re in a rush.

  • Food. Food can be hard if you aren’t living with someone who can cook for you. Figuring out which foods your stomach likes when your drugs make it unhappy is key. Also, if your condition includes fatigue then you probably won’t have the energy to cook all the time. Try to buy things that are easy to cook. Cut and keep them ready or frozen when you have time. On days that you have more energy you can cook and freeze. Try meal-size containers packed with a more or less complete meal. If someone is cooking for you, they might be willing to make a little extra so you can freeze some.