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

 —

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.

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.

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.

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?

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.

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?

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.

One Lovely Blog Award! June 2010
6 comments

Who Am I? June 2010
5 comments

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

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

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

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?

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.

I’m writing this post at 2:30am, having just returned from a friend’s birthday celebration. I should be sleeping, but I suddenly felt like writing, so here goes… Please forgive me if it’s not one of my more coherent posts..

One of the things that kept coming up in conversations (most of which I overheard rather than participated in) was the phrase “I’m so scared that…” Generally speaking this was followed by a few key phrases. Notably “that I’ll never get a job” or “that I’ll end up an old spinster.” Which instigated in my mind a recall action of all the other “I’m so scared that …” statements I’ve heard over the years. These often included worries about the death of parents. More to the point, it included worries about the speaker’s own health.

We spend all this time worrying about these things. Dreading the idea that the might happen. Worrying about what we are doing that might make those fears a reality…. How many people spend a lot of time considering what we would do if they actually DO come true? I surely didn’t, but here I am.

For those of us with chronic illnesses, one of those major fears has already come true, though. So what now? I guess there are a few options: we can wallow. we can ignore that this was a fear in the first place. or, I guess, we can embrace it. Ok, yes, I know that sounds utterly ridiculous. I mean, who embraces a worst fear come true? Well I’d be lying if I said that I have, or even if I said that I’ve been really trying to. I guess the real question is .. SHOULD I be trying to? Ignoring it doesn’t help me. Neither does pretending this was never something I was scared might happen. Still, I am determined to try to embrace what I can. Make the best of a bad situation, so to speak. Through all the pain and suffering we do learn things. We learn compassion. We learn acceptance. Many of us could probably treat a number of conditions ourselves at this point.

Here’s the real kicker though: this fear of becoming ill doesn’t stop when you are ill. Instead, the fear continues to course through you: you worry your meds aren’t the right ones, you worry about the side effects of those medications, you worry that your diagnosis is incorrect, you worry about all the impact on your life and relationships your illness will have, and most of all you fear the escalation of your illness.

At the end of the day, our situation sucks – no two ways about it. Nevertheless, we can choose to focus on the fear or we can choose not too. We might not be able to control whether or not we have an illness, but we can control how we react to having it.

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.

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.

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