Sam vs. Lupus

Stupid Things Physicians Say

2013-05-06T06:07:00.000-04:00

I spend long hours perfecting the art of whining about physicians. It's a hobby of sorts. But I recently realized that healthy people have no idea why those of us with chronic illnesses start foaming at the mouth when someone says the word "rheumatologist." Allow me to give you a short list of some of the most offensive, yet common, things that we lupus patients are regularly told by the people who are supposed to be working to keep us alive. Incidentally, these are also things that you should never, ever, ever say to a lupus patient unless you like being repeatedly whacked on the head with a cane.

Update 7 March 13: As per reader's suggestions, I have added a couple others.

12: (Not one I've gotten) "You're just a bored housewife." A lot of stay at home moms get this one. Why, I don't know. From my observations on the subject, I would surmise that stay at home moms don't have *time* to get bored. They're too busy preventing the toddler from burning down the house.

11. "You're hypochondriac/It's all in your head/You're just depressed." Yes. Because depression often makes people break out in a rash, have blue fingers and huddle up in pain.

10. "You look fine." No sh**. I look fine because I have to interact with normal, healthy people every day, and I don't want to scare them. (See here for more details on that.) But ask yourself this: would I still look fine without the wig/scarf/hat/etc., half pound of makeup and clothes that cover up my badly bruised limbs? No? I thought not.

9. "You need to try Tai Chi." Ok, I have nothing against Tai Chi. Or Chai Tea, if it comes to it. However, if you're seriously suggesting that my pain will magically go away if I start doing Tai Chi, I want whatever drug it is that you're taking.

8. "You're just stressed out." This is, in fact, true. I am stressed out. Being chronically ill, trying to find a job and having a sociopath physician will do that to a person. That being said, I'm still sick, and it's still your job to make me less so. Hop to it.

7. "You need a boyfriend/girlfriend." No joke, I was once told this (a long time ago) by a physician. Surprisingly, she didn't write a prescription. I was disappointed.

6. "You shut yourself in too much. Go out more." Ok...let's make a deal. You treat me to the point where I need fewer than 16 hours of sleep a day to survive and I'll go out more. Until then, me and my caffeinated self will continue to try to survive school and/or work, 'k?

5. "You should go out in the sun. Just wear a hat and sunscreen." You have *got* to be kidding me. Five minutes in the sun = one week of fevers. Plus I have a history of melanoma. And you're yelling at me for staying inside too much?

4. "Oh, just ignore the fevers [from #5]." Really? I bet if *you* had a fever you wouldn't be here insulting me. You'd be in bed, whining. I have spent months wherein I had to go to work every day with a fever of around 100F. I did my work. I did it well. But I sure as hell wasn't able to "just ignore" the fever.

3. "[Your symptom] is not lupus because I've never seen it before." I'm not even going to comment on this one.

2. "Your [insert blood count here] is in the safe range, so I'm not going to do anything about it." Really? Safe range? While I'm glad I'm not (currently) in the range that means I could drop dead at any moment, I'd really be a lot happier if I were in the normal range, rather than the "safe" range. And that normal range is 5-10 times higher than your so-called safe range. That's a problem. Please fix it, or be honest enough to say you don't know how.

1. "I'm going to give you an anti-depressant for your pain." Really. Because that doesn't belittle me or the fact that my body is trying to kill itself. Don't get me wrong, anti-depressants are good things for chronically ill people. I'm on about five of them. But my pain is not all in my head, it is not the result of negative self-image, nor is it going to be cured by giving me yet another psychiatric drug. The pain, Dr. Genius, is coming from lupus, not depression.

As I read through this list, I feel that warm glow of pride that comes from the fact that some variation of every one of these things has been said to me, but, and this is key, I have never been arrested for attempted murder. Not even for assault and battery. Go me.

Is Your Friend or Relative a Vampire?

2013-04-09T17:42:00.002-04:00

There was some confusion this weekend on the topic of vampirism vs. lupus patient. I have to admit that I did not realize that some people still genuinely believe in vampires; you learn something new every day. So, for clarification and edification, I give you this simple flow-chart to use next time you're confused:

And the Newest Absurdity is....

2013-03-30T06:26:00.001-04:00

For those of you in your mid 20s to 30s... do you remember the show "Daria?" I'm sure you do, because it was awesome. Anyway, to refresh your memory, and to fill in those poor lost souls who have to watch Daria through AmazonPrime or YouTube, I'll just point out that Daria and her friend were always watching a seemingly-unrealistic TV show called "Sick, Sad World."

I'm here to inform you that I have unwittingly stumbled into a set of "Sick, Sad World," and I can't get out. I mean, seriously...taken from an objective point of view, a script of my life would be ridiculed for being totally unbelievable, melodramatic and lacking in explosions...oh wait, no...chemistry class... Anyway, my point is that very little surprises me these days. Not even the newest development in the "Let's try to stop Sam's body from starving itself to death" campaign.

Are all y'all (as they say here in Baltimore; I think I've got the Southern grammar right, but am not totally sure) ready for this? I am going to get Botox injections. In my stomach. I kid you not. My stomach won't empty anymore, which is what doctors like to call "bad." Not even fluids can get through sometimes. So the answer is to paralyze the muscles that are not already paralyzed so they'll relax and let me eat/drink. Or that's the theory. I think at this point my physicians get together and throw ideas around: "Ooh, I know, next time let's try poison arrow frog!" "No, pufferfish toxin (tetrodotoxin)!" And then let's amputate two fingers, one ankle and a toenail!

So anyway, Botox. I'd make the obligatory jokes about being too young for Botox, etc....but they would fall flat. In other news, lupus and gastroparesis suck.

NSAIDs and Lupus

2013-03-27T13:10:00.000-04:00

I've noticed that a lot of people have expressed interest in Celebrex and lupus. Celebrex is a member of a group of drugs called Non-Steroidal Anti-Inflammatory Drugs (NSAIDs). NSAIDs can be both over-the-counter (for example, Advil, Aleve, and Aspirin) or prescription (Meloxicam, Voltaren, Celebrex, and Relafin). They are usually a physician's first weapon of choice when fighting pain caused by lupus.

As their name suggests, these medications are not steroids, so they do not have the host of side-effects associated with corticosteroid treatment. That's the good news. However, NSAIDs are, in general, not as powerful as corticosteroids, and they do have side-effects of their own. These side-effects include easy bruising, gastrointestinal bleeding, and a reduced ability to heal cuts.

Prescription NSAIDs supposedly have fewer side-effects than over-the-counter NSAIDs. Note the "supposedly" in that sentence. Vioxx, for example was an NSAID similar to Celebrex that was pulled off the market when it turned out that the drug company that made it hid the fact that it increased the chance of heart attacks. So take such claims with a grain of salt, but go with whatever your doctor recommends. I, for example, am not supposed to take many over-the-counter NSAIDs because they have the potential to make me bleed because I have low platelets.

I wish I could say that Celebrex, Votaren, or Relafin works great for lupus. I can't, because none of the NSAIDs help me very much. But other lupus patients find that such medications are extremely helpful. So it depends on the patient, and the treatment plan for each patient must be discussed with a physician. Hopefully you'll find one that works for you, even though I have not.

Benlysta, continued.

2013-03-27T06:58:00.003-04:00

For those who have asked recently, yes, I am still taking Benlysta. And it certainly still helping me. Unfortunately, it is not enough to keep my disease under control all by itself, but it definitely helps lower my fever and pain level. It ought to, given that it's costing my insurance company $3500 a month. #Ridiculous.

I find that the Benlysta starts to take effect within a few days of my infusion. Unfortunately, it tends to wear off after three weeks, and I'm scheduled to take it every four weeks. So one week a month is living hell. But hey, that's what side-effect medicines are for, right? Right? And the immunosuppressants that make me feel horrible and make me lose my hair? Fun times, my friends, fun times.

I have not experienced too many side-effects from the Benlysta thus far. I generally get a slight fever after taking it (despite being given Tylenol/Paracetamol before they even stick the IV in my arm), and a headache that lasts a day or two. Luckily, the headache is not a migraine, and responds to Aleve. Unluckily, my platelet count is so low that I'm not supposed to be taking Aleve. More fun! I also experience a day or two of bone-weary fatigue after the infusion. But, honestly, when do we lupus patients not feel like two-week old roadkill lying in the sun on the side of an Arizona highway?

The Supreme Ruler of the Home:
The Early Years.

So, in the end, if you are lucky like I temporarily am, and have insurance that will cover Benlysta, I do recommend it. It takes the pain down by two to three points on the dreaded pain scale, and makes it so I rarely run a fever these days. Which is a definite improvement over the "always running a fever" thing I was doing in the pre-Benlysta days. Of course, you may find yourself falling asleep at 7:30 the evening of the infusion, but hey, maybe you'll be lucky and wake up at 3:30 with insomnia, nausea and a cat that wants to played with NOW. Nothing like trying to write a thesis with a cat sitting on your lap batting things off your desk. Good thing she's so cute...

Seriously?

2013-03-25T12:56:00.000-04:00

Ok...I try to keep this blog more or less informative. And I try not to rant without at least pretending to have an educational reason to do so. But right now I'm royally pissed off, and feel the need to say so.

I have gastroparesis. Not even liquids empty from my stomach as they should. My specialists realize this, and realize that it is a very serious condition. I've been steadily losing weight for a long time now, despite my best efforts to get calories somehow, anyhow. Last Sunday the combination of half a protein bar and an antibiotic made me glad I'd purchased bright pink barf buckets. This is not fun. This is not normal. This is not what I want. People with gastroparesis cannot eat things with much fiber, so salads, for example, are out. I love salads. I used to eat them on an almost daily basis. Now I can't. I'm pretty much stuck to liquids these days.

Reading all of that, just imagine how I feel when I am told that it is, essentially, my fault. My primary care doctor (who is no longer my primary doctor) believes that I am anorexic. Not anorexic in the scientific meaning of the term, "does not or cannot eat," but anorexic in the mental illness sort of way. His logic? Anorexia means you don't eat. Not eating slows down your stomach. Ergo, I'm anorexic and that's why I have gastroparesis. Note that he has not even bothered to get the report from the GI doctor. He didn't see the endoscopy results, nor does he care about them. Anorexic he believes me to be, therefore anorexic I must be. No firm evidence that contradicts his pet theory will sway the idiot. I do not appreciate this.

I have to live with my disease every minute of every day. I have to live with the sure knowledge that every physician, psychologist and/or personal trainer will immediately assume that I am anorexic. I have to sit in class trying not to be made sick by the smell of my neighbors' food. I can handle all of that. But what I can't handle is being told that it is a mental illness that, though serious, I do not have. It insults me, and it insults those who genuinely suffer from anorexia nervosa.

Parting Tip: Don't ask a chronicaly ill person how she stays so thin. Just. Don't.

With Many Thanks!

2013-03-20T13:43:00.003-04:00

(Sorry, it's hard to photograph a transparent plaque!)

Yesterday, much to my surprise, I received a plaque in the mail from the Alliance for Lupus Research (ALR) It was given in recognition of my team's fundraising efforts for the DC Walk for the Cure. It really shouldn't have my name on it...it should have all of your names, as so many of you donated so generously to our team. So, once again, thank you, and know that the ALR thanks you too!

The Vicious Cycle

2013-03-15T19:33:00.000-04:00

Finals week: time to study, stress, write final papers aaaaaaaand get sick. Invariably, if you're a lupus patient. The stress alone will cause a flare, and you're lucky if it's a minor one. Unfortunately, this term I've had the ~~pleasure~~ challenge of dealing with a "normal illness." In other words, I have a sinus infection. Again. Given all the immunosuppressants I take, it's no surprise that I get these %#$@ infections on a fairly regular basis. But here's the thing that healthy people may not know: when you have lupus, there's no such thing as "just" an infection. Because any type of infection will throw you down the dreaded rabbit hole, which (in defiance of the laws of nature and physics) turns out to be an infinitely circular.

The circle goes something like this: 1) Suicidal immune system tries to kill body (i.e. lupus or some other autoimmune disease). 2) Doctors give you drugs to knock out the Suicidal system in question. 3) Turns out that if you kill the immune system, you get sick very easily. 4) Getting sick ramps up the stupid Suicidal immune system which is trying to fight the infection (good), but ends up also trying to kill you (bad). So a minor sinus infection turns into a sometimes-lifethreatening situation as the doctors are stuck between wanting to stop your immune system from killing you and wanting to leave enough of it intact to let it kill germs. They're never able to get this balance right, because of that whole "Suicidal" thing. So, in my case, the number of platelets I have (those are the parts of the blood that heal wounds and stop you from bleeding to death) plummets like a rock. This time I've been lucky, relatively speaking. I'm right on the border of where the doctors start freaking out. In the past sinus infections have put me in the hospital and made me get a platelet transfusion. No bueno.

So, apologies for any comments un-commented upon, emails unreturned, etc. My body is ricocheting between "SLEEP NOW!" "Too. Much. Pain. and "Nom nom nom platelets." Plus, of course, there is that whole finals thing to deal with. #Lupussucks.

The return of (or to) Johns Hopkins Lupus Center

2013-03-12T11:59:00.000-04:00

I'm not going to lie...I have had my doubts about Hopkins' Lupus Center. The whole "email me instead of going to the ER" thing had me worried. But I am starting to come around. It was, after all, Dr. Petri (head of the center and my rheumatologist) who figured out that, hey, maybe this patient has gastroparesis. Every other doctor set my symptoms down to a) drug side-effects or b) anorexia. And apparently gastroparesis isn't all that common in lupus, so fair play to her for getting the diagnosis right on the first try.

I've also been impressed by the fact that Dr. Petri is not a fan of long term use of Prednisone. Most rheumatologists try to force as many corticosteroids down your throat (or through your veins) as possible. I hate that approach. Apparently so does Dr. Petri. She has introduced the "no more than one solumedrol shot/infusion series every three months" rule because the research shows that any more frequent administration can result in serious organ damage. Fair enough. As she said, more frequent doses would make me feel better...but they'd be doing serious organ damage in the process. No bueno.

Unfortunately, I am the odd one out when it comes to medications. Drugs that are supposed to be safe tend to cause problems for me. So...we will have to see if I tolerate the new treatment plan Dr. Petri worked out. If I don't she said she'll find something else. This time I'm slightly less skeptical about her ability to do so. I guess the Lupus Center may be worth it's reputation after all.

Product Review: HotSnapz

2013-03-05T20:50:00.003-05:00

As I've mentioned before, I (and many other patients) suffer from Raynaud's Syndrome. This syndrome is also known as "freaky stiff colored fingers disease." Raynaud's can lead to serious problems, as it makes it easier for people to get frostbite. This can, in turn, lead to the death of the skin at the tips of a patient's fingers or toes. That's obviously less than optimal.

I tend to prefer recyclable or reusable products. There are one-time use hand warmers that work well once, but must then be thrown away. I prefer to use a product I found that is reusable. It is called HotSnapz, and it is really really cool. All you do is snap a metal button and wham, you have a warm hands. To reuse, all you have to do is boil the handwarner until the solid crystals become liquid again. Very easy, very reusable,

The only downside to these handwarmers is that they are only warm for about thirty minutes. If you're going skiing all day, then this might not be the product for you. But if you're a patient with Raynaud's syndrome who needs instant warmth, it's perfect.

For those looking for a longer source of heat, I would recommend a more traditional, throw-away hand warmer. However, if you just need something to keep your hands warm on the way to work, or to stop Raynaud's from progressing, hotsnapz is the way to go.

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Why I Choose to Fight.

2013-02-19T19:27:00.002-05:00

Jennie Renee Marchant Hyde, beloved mother,
grandmother and great-grandmother.

In the faith in which I was raised, there is a hymn that contains the following words:

And should we die, before our journey's through,
Happy days, all is well.
We then are free from toil and sorrow, too
With the saints we shall dwell.

I think I can say with certainty that every chronically ill patient thinks about the possibility of his or her (early) death. Many of us will live long lives, but, as various obituaries on Facebook and support forums remind us, many people with our condition(s) die at a young age. We rarely talk about it, but the possibility that our illness will win someday is always there, the elephant in the room.

At times it seems like dying young is the easy option; it means you don't have to struggle with pain and disability for as many decades. And, as C.S. Lewis so cogently reminds us in his "Screwtape Letters," uncertainty about the future is often more of a trial than the certainty of future danger or risk. Not knowing whether an illness will become terminal is, in some ways, the hardest part of being ill. Maybe it's just me and my Type A personality, but I'd much rather know one way or the other. I'd even put it on my calendar..."X day, Y month, 20**. To do: die."

But life isn't designed for the Type A personality, and neither are chronic illnesses. Whether it is lupus, scleroderma, gastroparesis, cancer, rheumatoid arthritis or multiple sclerosis, the fact remains that we simply don't know if, or when, the disease will become fatal. And so each patient must keep fighting, day after day, ad infinitum. It's just what we do...the dreadful algebra of the situation doesn't give us any other viable option. We live with uncertainty, we try to do our best, and we always, always know that our best isn't as good as it could be if we were healthy.

From conversations with patients of many different illnesses, I've found that each patient has a different reason to keep fighting. I am sad to say that I do know one patient who decided not to keep fighting, but happy to say that I only know one. For some people they fight to live for their children. For others it is because of religious beliefs. For some of us, it is the example set by someone we deeply respect and to whom we look for inspiration.

Luckily for me, I have a role model who has set the bar very, very high. That woman is, and has always been, my grandmother, Jennie Renee Marchant Hyde. I have always loved and admired my grandmother. She passed away recently, a victim of a chronic disease that did turn out to be fatal, but she fought the good fight for many long years.

My grandmother suffered from severe migraines for decades. For any of you who experience such things, you know that these are no laughing matter. They don't call some headaches "suicide headaches" for nothing. And, as many people know, migraines can be brought on by stress. I would therefore surmise that my grandmother suffered more than I can imagine in the years and months before the death of her eldest daughter. No parent should have to bury their child, let alone watch their daughter suffer for years from terminal cancer. And yet, so it happened. And grandma dealt with it with grace, love, and a positive face for the outside world. I cannot imagine how much the death of my aunt hurt my grandparents, but I know that they responded with love and solicitude for my cousins, and for all the members of our family.

Grandma fought her own cancer for 8 years before "her journey [was] through." She and I had a deal: we would tell each other anytime our respective health statuses changed. I didn't need to tell her every week that I still had lupus, but if some new complication arose she was the first to hear about it. I included her on any email I sent to family members about some new health problem (such as when I was diagnosed with melanoma). That was the deal, and we both kept to it.

I will miss my grandmother every day of my life, whether that life ends up being long or short. But I know that, as long as I am alive, I will do everything I can to help advocate for less fortunate patients, as I know grandma would expect me to do. I will continue to fight illness(es) as she did. Because some day I will die, and when I do I want to be able to look my grandmother in the eye and tell her I did my very best to follow her example. May God be with her 'till we meet again.

Gastroparesis

2013-02-14T12:48:00.003-05:00

Those of you who are (un)lucky enough to see my Facebook statuses know that I've got a new and exciting complication going on. The reason I'm somewhat displeased with this new problem is that I can no longer eat. (Incidentally, saying "No thanks, I can't eat," in turning down an invitation to go out for brunch will get you really weird looks).

Those of you who know me in person know that I am already thin. Those of you with access to my medical records (I'm looking at you, Homeland Security) know that I'm medically underweight. I've been trying to figure out why I drop weight so fast, and why it makes me so nauseous to eat. Now I know: I have a condition called gastroparesis.

"What the **** is Gastroparesis?" I hear you saying. Gastroparesis literally means paralyzed stomach. It can occur for different reasons, but it is thought that in lupus patients the immune system attacks the nerve that controls the stomach muscles. This prevents the stomach from working on that "digestion" thing. Instead, food and liquid just sit in the stomach, not moving on to the intestines. And so the stomach gets full very easily. If you try to add any more food to it, well...what goes down must come up, if you catch my meaning. Not so fun. Theoretically, liquid should empty the stomach just by gravity, but in my case that doesn't seem to happen very well.

How long will this last? I haven't the faintest idea. It, like every other symptom in lupus, could go away tomorrow or could last for the rest of my life. And if that doesn't sound fun, remember that the FDA-approved drug for gastroparesis is, basically, a poison that damages other nerves. I am under orders to get another drug filled in Canada, but have been having trouble doing so. (If any of you know a Canadian pharmacy that sells Domperidone, please let me know). In the meantime I am basically living on a liquid diet. Contrary to popular belief, it is possible to get really sick of hot chocolate. Remember that I am also gluten-intolerant; this does not leave a whole lot of options, dietarily.

So there you have it: the latest reason my life is so fun and exciting. Heaven help the next person who says that she wants to be "thin like Sam." Trust me on this one, folks....no, no you don't.

P.s. Ok, I admit it. I called the doctor who thought I was anorexic, gave him the diagnosis, and then actually said, "so there!" But he totally deserved it, so I don't feel even a smidge of guilt.

Update: the previously mentioned doctor still thinks I am anorexic, in defiance of all the evidence found by the specialists. I am proud of myself for not using a baseball bat to try to change his mind.

Addison's Disease

2013-02-09T13:43:00.000-05:00

In response to a question I received, I thought I'd write a brief overview of Addison's disease, a condition that occurs more frequently in certain autoimmune diseases.

What is Addison's Disease?

Addison's disease, which leads to what is called "adrenal insufficiency," occurs when the adrenal glands stop working for some reason. The adrenal glands sit on top of our kidneys and make hormones in response to signals from the brain. These hormones regulate blood sugar (cortisol), sexual function (various sex hormones), and the balance of electrolytes that are required for cells to work properly (aldosterone). This is how it is supposed to work:

Unfortunately, sometimes the adrenal gland is damaged or stops producing hormones. This can happen for many reasons. Unfortunately one of the reasons is that the immune system can attack and damage pituitary gland in an autoimmune disease. When this happens, the pituitary stops sending messages to the adrenal gland, so the adrenal gland stops making hormones.

While there are infections and/or other circumstances that can cause the pituitary to stop working (massive bleeding, for example), the autoimmune reaction against the pituitary gland is the most common cause of Addison's disease.

So how do you treat Addison's disease? Basically by replacing the hormones that should be made by the adrenal gland. Additionally, since the pituitary gland also controls the thyroid, synthetic thyroid hormones must be taken by the patient. Hormone treatment must continue as long as the pituitary is not working. In many cases the pituitary gland has been so badly damaged that hormone therapy will be required for life. The good news is that, once physicians tweak the doses a bit, the synthetic hormones will work pretty well, and a patient will feel as close to normal as is possible in an autoimmune disease.

No, I don't make this **** up, continued.

2013-01-11T09:46:00.002-05:00

The saga continues:

Exhibit E: I Hate Clinicians (also featuring Return of the G Word).

I told the triage nurse about my gluten-intolerance. I also told the attending doctor at the ER, two Physician’s Assistants, and all of the nurses. I am therefore still unclear on why they chose to give me broth made with gluten as part of the mandated “clear liquid diet.” Cue the return of dry-heaves. And another day in the ER. That’s right, folks, I spent 2 days in the ER/ICU because nobody listened to me, (as well as due to a debate between different doctors over whether and/or when to admit me). This is not hard folks: don't give something to a patient who is allergic to it. Period. End of lesson.

Exhibit F: Did I Mention I Find Rheumatologists Frustrating?

Ok, so they finally gave me enough steroids/anti-nausea drugs/liquids/etc. to make it so that my leaving the ER would not result in an immediate malpractice lawsuit. And my rheumatologist won the debate over whether or not to admit me…so I get to go home! Yay! I was ordered to “follow up” with various doctors, so I dutifully sent a note to my rheumatologist. I got a note back that, and I swear that I’m not making this up, expressed her displeasure with the fact that I went to the ER at all. (Remember, I was unable to keep down water, and had both dangerously low platelets and extreme dehydration). No, apparently the correct protocol was for me to email her because, and I quote, “there are no rheumatologists there!” Really. Well, from where I stand, that seems like a pretty convincing argument to go to the ER.

I found this puzzeling, so I wrote back the following email:

“Just to be clear, considering that my platelets were at [dangerously low levels] and I wasn't able to keep water down, would you still want me to email you in the future, or was the ER the appropriate choice this time?

…and got the response “Please always email me?” Next time I can’t stand up and am vomiting the first thing I will do is sit down at my laptop and send an email. I’m still shaking my head in disbelief at this one, honestly.

Exhibit G: Incompetence Chez Hopkins.

Hopkins has the number one hospital in the country. It is indisputably the best place to go if you have a weird mix of autoimmune diseases. That being said, their administrative branch sucks. I had an appointment with a GI doctor scheduled for October. The day before the appointment (after I had made arrangements to leave classes early, etc.), I got a phone call that said the doctor would not be available. I was, they said, to be put on the “cancellation” list, and told that it shouldn’t take more than a couple weeks. Well, after this whole incident I thought that maybe I ought to go in and formally get a diagnosis of celiac disease so at least it’s on my chart. I rang the office, only to find that apparently I have an appointment at the end of January (news to me), but I’m still on the cancellation list. Lovely.

So there you have it, the story of my “winter break.” I’m thinking of submitting it as a mini-series to Comedy Central. After being forced to watch early morning TV in the ER for several hours, I’m thinking I may have a shot. If what I saw was any indication, the screenwriters could use a little help.

No, I don't make this **** up.

2013-01-09T13:15:00.002-05:00

As a very wise friend of mine once pointed out, a few days in the life of a chronically ill person would make for a very unbelievable comedy show. And this is coming from the person who has thought, “No way, that’s a joke. There is no way that could be made into a TV show” one too many times. No, my friends, it’s time to face reality: my life is about as believable as a political commentator on LSD. The positive side? It can be funny as *$@$...at least in retrospect.

A life of pain, fatigue and mental confusion doesn’t sound funny. And it isn’t funny when you’re actually living it. But after the fact…yeah, pure comedic gold. Allow me to present exhibits A-E: my winter “vacation.”

Exhibit A: Christmas Day

I knew that a long trip home to CA would wear me out, so I compromised and decided to fly out on Christmas, and back to MD on New Year’s Eve. (The flights are way cheaper that way, and studying a public health isn’t exactly a high-income occupation). So my very, very kind roommate drove me to the airport. Sounds simple, doesn’t it? Well…no. It turned out that the freeway was covered in black ice. We saw multiple cars off the road, including one impressive pick-up truck that had clearly spun at least 180°. Not being bat-sh** crazy, my roommate was forced to slow down. So we got to the airport late, and I was barely on time for my flight.

“Sure,” I hear you saying, “but that happens to everyone.” Indeed it does. However, what does not, as far as I know, happen to everyone is to have another passenger die on the flight right after we hit cruising altitude. Yup, the poor woman suffered from cardiac arrest and was clearly, to those of us with any medical background, dead. They had to keep doing CPR anyway until the plane landed in Columbus, OH, the nearest airport. I was in an aisle seat, so I could tell there was no hope. Once AED has failed, that’s it folks (that’s the “CLEAR!” Heart-restarting machine you see on medical dramas).

Naturally, the woman next to me was as upset and concerned as I was. I kept her updated on what was going on, of course. As it turns out, she has a PhD too, and works as a psychologist. So she also knew the gravity of the situation. The whole episode was tragic, but with a “what the *$@$?” sort of feeling to it. I should mention that, as soon as the woman told me she was a psychologist, I knew she would diagnose me with OCD. I was wearing a facemask, and using purell every 30 seconds. I was doing this because of the five, count them five immunosuppressants I’m on or have been on in the past month, but there was no way for her to know that. Finally I explained, and she confirmed that she had indeed assumed I was OCD. Nailed that one.

Exhibit B: The G Word.

It is very hard to have a gluten-intolerant person safely living in a gluten-filled home. I tend to believe that you either have a gluten-free kitchen or you don’t. This is a little bit of an exaggeration; my roommate does have some products that would make me sick for two weeks. But since there are only two of us, I manage to avoid them, and she’s very careful to warn me about possible risks.

Unfortunately, in a house with 5 people, only one of whom is gluten-intolerant, this is just not possible to do. Through no fault of my family’s (and despite a lot of efforts to protect me), I managed to ingest something with flour in it, and was feeling pretty sick by the end of my trip.

Exhibit C: The Return of the G Word.

I got back to MD early in the evening, and my roommate and I decided to go to dinner. Neither one of us are big partiers, so it seemed like a low-stress way to celebrate the new year. Frankly, I also didn’t have the energy to go to a big party. So we went to a pub and ordered dinner…carefully checking to make sure that everything was gluten-free. I sent that poor waitress back and forth to the kitchen several times. End result? My meal was gluten-free except for the salad, which I had not asked about as (theoretically) all the ingredients were printed right there on the menu. Turns out they forgot to add “couscous,” a kind of pasta very high in gluten. End result? Sick Sam.

Exhibit D: I Hate Physicians.

My rheumatologist is a well respected clinician, and does good work. However, she is adament that painkillers should never be used to treat lupus. I’ll stop here so all my fellow lupus patients can stop laughing like hyenas on helium. She told me to email her if my lupus flared. Well, my lupus (and probable celiac disease) were flaring badly, so I emailed her. Repeatedly. Nada. Finally I said, basically, just give me some steroids, and I’ll make sure my roommate puts me on suicide watch. She agreed to that on Friday. Note that I’d spent the entire week in bed.

So my roommate (who deserves several medals of honor) went to pick up my prescriptions. But guess what? That’s right…the pharmacy hadn’t filed that particular prescription correctly, so she didn’t get it. Lovely.

At about this time I was crying in pain, unbelievably nauseous, and unable to stand. I took an anti-nausea drug designed for chemotherapy patients. It didn’t work. I took another one. Also didn’t work. Cue the dry heaves. The ER started to look like a good idea, but I hate ERs, so I tried to see if drinking some water would help me feel better. I’ll spare you the details, but let’s just say that what goes down must come up. At that point my roommate lifted me into my wheelchair (she’s a body builder, thank heavens), and took me to the ER. Where she waited with me until I sent her home…I ended up waiting 6 hours just to see a doctor. Think about this people…dehydrated patient who can’t keep water down…let’s have her sit in a dry waiting room for six freakin’ hours.

Exhibit E:

When I finally got to the ER, they took a blood count. I had to ask the doctor to look at my platelet count, which tends to be low. Guess what? It was dangerously low. And I’m talking “You could have a stroke at any moment” kind of dangerous. At this point they finally decided that, hey, maybe they should do something, so I got my IV hooked up to some fluids and a whole lot of steroids. I would like to know, however, why I had to be the one to point out the potentially life-threatening problem.

I see this post is getting ridiculously long, so I’ll leave it here and say, as any good (or bad) sit-com would say…to be continued.

Please help!

2012-12-14T12:57:00.000-05:00

One of my dear friends, my first roommate in college, is experiencing a major crisis. Her boyfriend experienced a stroke this past week, even though he is very young (early 30s, I believe). If you can donate even a small amount towards his medical bills it would be greatly appreciated. The link to do so is here:

HELP JEFF!

Please, in this season of giving (whether you celebrate Christmas, Hanukah or Kwanzaa or none of the above) consider helping this unfortunate man (Jeff) in his time of severe illness.

Love and thanks to all,

Sam

Team Lupetta

2012-10-20T19:01:00.001-04:00

I didn't get a photo of everyone, but here are a couple photos from our team at the ALR walk! We ended up raising over $3000, and I managed to walk the entire 5K, although I did have to use my cane.

Walk for Lupus, Part II

2012-10-19T11:41:00.001-04:00

A couple of months ago, my roommate and I decided to participate in the Alliance for Lupus Research's (ALR) Walk for a Cure. ALR is the number one private funder of lupus research, and it is set up so that 100% of all donations go directly to research. No administrative overhead is taken out of donations; the board of directors pays those costs themselves.

We started out with a modest goal. I had never been a captain of a fundraising team, and didn't think I'd be able to raise all that much money, especially because I'm a full-time student in a rigorous graduate program. I set our team goal at $500. It seemed like a reasonable amount. I take no credit for the fact that we met and exceeded this goal within about six hours of forming the team. It is through the generosity of friends that we did so. So I increased the goal. And then increased it again. And again. And again. Thanks to all of you, we have raised about $3,000 for the walk tomorrow. I cannot thank you enough. I won't embarrass individual donors, but imagine my gratitude at the friend from high school who donated $500. Or imagine my surprise when I found out that the VMWare Foundation Matching Gift Program sent our team a cheque for $500 (thank you to both that program and to whomever it was who donated through them!) May God bless you all. As someone who is greatly benefitting from the work of ALR, I offer my deepest personal thanks to all of you.

I cannot thank my friends, family, church members, friends of family, etc., enough for encouraging, donating, and signing up to walk. Thank you Emmanuel Church for allowing us to announce our fundraiser in the weekly email and announcement. Thank you to the complete strangers at church who walked up and handed me a $100 check. Thank you to the other people at church who could not offer money, but offered prayers instead.

Tomorrow we walk in Washington D.C. for a cure. Team Lupetta is relatively small, but I know that each team member represents and is supported by many, many more people who have helped our team surpass our goal again and again.

Thank you.

(How to Avoid) Poisonings in Lupus Patients

2012-10-12T13:09:00.002-04:00

Please excuse my having been AWOL from the blogosphere recently. My current Master's program is rather intense. By "rather intense" I mean "new classes start every eight weeks." Yikes. That being said, this term I've been taking an injury-prevention class. "Injury" as a public health term includes poisonings, as well as more traditional injuries, and the class has made me realize how easy it would be to accidentally poison a lupus patient like yours truly. We are on so many different medications, some of which can interact with each other, that it seems a miracle that more of us are not going the way of Anna Nicole Smith, Heath Ledger and Amy Winehouse.

In order to prevent lupus patients from becoming the newest "accidental poisoning" victims, I've compiled a list of some of the more obvious dangers, and how we can avoid them. This is by no means a comprehensive list, by the way. If you're ever unsure about medications, ask your pharmacist! That's what (s)he is there for, and I always enjoy a good round of "Stump the Pharmacist."

Tylenol/Paracetamol/Acetaminophen (depends where you live):
As odd as it is to think of this common over-the-counter drug as dangerous, it can actually be a potent liver toxin. You only need to exceed the recommended dose by a relatively small amount to put yourself in real danger of liver failure. Why do I pick on this drug for lupus patients? I mean, we all know that it's just a sugar pill when it comes to pain control. Yes, but at least for me it's a dietary staple when I'm running my weeks-long fevers. I count the hours until I can take it again, as the fever normally returns an hour before the next dose is due. Also, there are a few things that some people may not be aware of that make it easy to overdose on this drug.

Tylenol comes in many different doses. Normal Tylenol is generally 325 mg. Extra-Strength is 500 mg. Extended-Release Arthritis pills (my personal favorite) are 625 mg. What does this mean in non-geek? Taking two ordinary Tylenol will give you roughly half the dose of two Arthritis Tylenol pills. So if you're used to taking one variety, it's easy to accidentally take a very different amount of another.
Tylenol is hidden in some prescription painkillers. Vicodon 5/500, for example, has 500 mg of Tylenol. So if you take two vicodon as prescribed, and then take a couple tylenol, you've probably just given yourself an overdose.
Tylenol + alcohol = bad idea. Tylenol and alcohol both end up in your liver. Your liver, fine organ that it is, can generally deal with either one, assuming you don't overdose. However, if you throw both drugs at it at the same time, it can become overwhelmed and start to fail. Take the warnings on the box seriously: do not mix tylenol and alcohol.

Methotrexate:

Most of us know this drug. It is a chemo drug often used to treat lupus. And, as anybody who has ever taken this medication knows, it is innately poisonous. That's the point, really. It is supposed to poison enough of your immune system to keep the system from killing your body, but not poison the rest of the body. Of course it does poison other parts of the body, but most doctors (who aren't taking mtx) feel that a little bit of systemic poisoning is worth knocking down our kamakazi immune systems. And they're probably right, although it's hard to agree with them the day after the weekly dose. There are some ways to either increase or decrease your risk of poisoning with methotrexate, though:

This is a once a week drug, NOT a daily drug. Lupus patients have died because they failed to understand this. When your doctor tells you to take, for example, 8 pills, (s)he means to take 8 pills once a week. Take 8 pills once a day and you may end up dead.
To help with the side-effects of methotrexate, your doctor should give you a prescription for folate/folic acid. If you still have a lot of trouble, than (s)he should give you a prescription for leucovorin, which is a stronger form of folic acid. This helps protect the rest of the body, and allows the methotrexate to attack only the immune system. If you're having side-effects that won't go away and you're not on leucovorin, I highly recommend pestering your doctor until you get a prescription. For me it makes the difference between being uncomfortable and having dry heaves for two days.
You absolutely must not mix methotrexate and alcohol for the same reasons listed under tylenol. Unfortunately, methotrexate is a stronger poison than tylenol, so the consequences are even more severe if you mix the two. Drinking while on methotrexate is a good way to lose your liver and/or die.
Women taking methotrexate must not become pregnant. I know, it sucks. Lupus tends to hit women who are of childbearing age, and a lot of us would like children. But methotrexate is highly dangerous to a developing infant. It WILL cause either severe birth defects or miscarriage. There is no way to safely have children while taking this drug. None.

NSAIDS (Non-Steroidal Anti-inflammatory Drugs)
Whether they are over-the-counter (Aspirin, Aleve, Advil, etc.) or prescription (Celebrex, Meloxicam, etc.), any lupus patient has had to take NSAIDs at some point. They are the physician's first response to arthritic pain. I've taken eight separate NSAIDs that I can think of off the top of my head. None of them worked for me, but they were worth a try. That being said, there is one danger to be aware of. All of these drugs are related, so it is dangerous to take multiple varieties at once. This is especially true of the over-the-counter NSAIDs; they are all derivatives of aspirin. One of the side-effects of all such drugs is that they reduce your blood's ability to clot. This can be beneficial in small doses, and doctors routinely prescribe baby aspirin to people at high risk for a stroke. However, if you combine, for example, aspirin and advil, your body may not be able to stop bleeding if you have even the slightest cut or bruise. Add that to the fact that traditional NSAIDs really mess up your intestines, and you have the potential for serious danger. So choose one NSAID, and do not take another until after the dosing period of the first one is over.

Interactions:

I don't know about you, but I know I take at least two drugs that may potentially interact. However, my doctors are a) aware of that fact and b) have decided it's worth the risk. Let's hope they're right. They can only make this decision because I tell every doctor every single drug I take. This is why it's absolutely imperative that you tell your doctors about every drug, supplement, alternative medicine, etc. you take. Even alternative treatments can interact with medications, and it's important that your doctor and pharmacist know exactly what you are taking so that they can make informed decisions about your medications.

I'm not trying to tell anyone what they have to do, nor can I say that I have never, for example, taken more tylenol than was strictly wise. But many people are unaware of how easy it is to poison yourself when you have lupus. When you think about it intuitively, it's not that surprising, really. I think I'm on about 15 prescriptions or so (I stopped counting after I passed a dozen; it was too depressing), and it makes sense that at least some of those might interact with anything else I might take. So I can only urge caution, and suggest that you play "Stump the Pharmacist" if you have any questions. It's a lot of fun to see them have to go look up things, actually. Also, it's worth doing your own research. I generally look up any new drug I'm given to see if it will interact with something I already take. I also check to make sure that what the pharmacist gives me is what has been prescribed. I've had pharmacists try to give me the wrong drug before. Do not hesitate to tell a pharmacist that (s)he has screwed up. It could save your life.

Image credit: http://www.webweaver.nu/clipart/img/historical/pirates/skull-and-crossbones.png
Usual Disclaimer: I am not a clinician, and cannot offer medical advice. All opinions or information offered is from my own research, and reflects only my opinions or conclusions. I am not representing any institution; all articles are strictly my own.

John's Hopkins Lupus Center

2012-08-31T09:28:00.001-04:00

As you all know, I've been busier than a honeybee on crack for the past couple of months. As odd as it may seem, I have now finished my first of five quarters at Hopkins, and managed to pass all my classes! Time flies when you're sick, in pain, and taking &$%# epidemiology.

As luck would have it, I was able to get an appointment at the John's Hopkins Lupus Clinic for this week, which I have off from school. I saw and was accepted as a patient by Dr. Michelle Petri, arguably the USA's best lupus practitioner. I learned a few things that I thought were interesting, so I thought I'd share. Here is a list, in no particular order:

1. If, like me, you have neuropathic pain (as in the case of fibromyalgia, or any other syndrome where your nerves are simply going bonkers), narcotic painkillers may actually worsen the pain. She suggested doing Tai Chi to help alleviate the pain and stiffness, although I'm more of a yoga girl myself.

2. Lupus patients should avoid, among other things, alfalfa sprouts (I happened to know that one already), and garlic. Odd, but there you have it.

3. Caffeine is the number one trigger for migraines. I was *not* happy to learn that I have to switch to decaf. Not happy at all.

4. Plaquinel, even if it doesn't seem to do any good, should be taken by any lupus patient who can tolerate it. I'm now part of a study designed to show that it reduces flares, kidney disease and neurologic complications. Basically, Dr. Petri thinks that any patient who can tolerate it should be on it for life.

5. As a white female, I have a 50% chance of developing lupus kidney disease (lupus nephritis). Dr. Petri didn't tell me the rates for other races, presumably because they don't apply to me directly.

All in all, I was pretty impressed. Dr. Petri (her name is very appropriate, no?) is a down-to-earth, nice lady. She makes herself available to her patients through email, and will send a copy of her medical notes of each visit to the patient after each visit. I elected to enroll in two studies, being a scientist, but she made it perfectly clear that she would not think any less of me if I chose not to do so. I did, however, decline to give permission to have my session taped for learning purposes. For now the advice is to add plaquinel to the 14 or so other medications I'm on, and stay the course with the methotrexate and the Benlysta. She also has a couple theories about why I'm dropping weight so fast, and made it clear that she would be interacting with me via email before my next appointment.

Must SMASH!

2012-08-06T10:43:00.000-04:00

Ok, people...I get it. Mistakes happen. Sometimes you're supposed to order an infusion drug for a patient whose quality of life absolutely depends on it, and you flake out. Things happen. But to do it twice in one week? Not cool. St. Joseph's Medical Center of Towson, MD is no longer on my good books. I highly recommend avoiding it if you need Benlysta or any other infusion drug meant to treat autoimmune diseases.

Walk for Lupus!

2012-08-04T14:09:00.002-04:00

I have always thought that Lupus Walks were stupid. Why? Because they hold them in the middle of the day, when most lupus patients can't (safely) participate! I still think that. That being said, the Alliance for Lupus Research is holding a walk in Washington D.C. on October 20th, and I've decided to raise a team. Will I be there? Yes. Will I be covered head to toe in sunblock, UV blocking clothes, Sunglasses, etc.? Yes. Will I actually be walking? I don't know. I don't know because lupus is an unpredictable disease. The one and only drug that works to control my disease is the one and only drug EVER invented for lupus, and I haven't been able to receive an infusion of it since I moved to MD. But I will be there, and will do the walk, in a wheelchair if necessary.

If you're in the Washington DC/MD/VA area and would like to join my team, please do so. If you are not able to do so, please feel free to donate to the team instead. 100% of the money donated goes directly to lupus research; overhead administrative costs are paid for by a separate foundation. So please, for those of us who have an incurable disease that devastates our lives and the lives of our loved ones, consider participating in some way. Please visit Team Lupetta's (little wolf) website to join or donate.

And to those of you who have already donated, thank you, from the bottom of my heart.

Dr. Sam Hyde

Update: Sam Vs. Baltimore

2012-07-18T17:19:00.001-04:00

For those who are wondering, I have kind of gotten my parking woes straightened out. I say "kind of" because I do have a card that allows me access to the garage, but I still don't know how much they're charging me for the *$@! thing!! I may yet murder the lot of them. For one class we were told to take a picture of something in Baltimore and record a voice recording about what we thought about it. I posted the picture in front of the friend's house I often stay at (see above), showing the total lack of handicapped parking on the street. I then commented quite pointedly that Baltimore doesn't have handicapped parking on the street anywhere. Not even in front of the Veteran's Center. Not cool, y'all.

As for lupus, I am realizing how very much the Benlysta has been helping me. Why, you ask, am I now realizing this? Quite simply because I am overdue for my next infusion, and so I'm reverting back to a pre-Benlysta state. Not good. All of the sudden the lining around my lungs is inflamed, every joint in my body is screaming, I'm covered with bruises and I keep getting lupus rashes. Nothing says "chic" like a bright red lupus mustache! I'm scheduled to meet with my doctor tomorrow, and if he doesn't have an immediate plan for giving me the drug I'm going to throw a major hissy fit.

On a side note, my much-beloved doctor in Vermont recently punctured a lung, so for those so inclined, please offer prayers or thoughts of healing for him. He was my doctor for six years, and moved mountains to take care of me.

A Better Pain Chart

2012-07-18T17:07:00.001-04:00

Taken from the Fibromyalgia Network, who got it from an Hyperbole and a half:

Because I don't about you, but for me those semi-smiling faces on the regular pain charts just don't do it for me. Where's the "I'm in so much pain I could punch a hole in your wall?" face??!?

Open Letter to the John's Hopkins School of Public Health

2012-07-05T21:02:00.002-04:00

Saving lives...but penalizing your own students for being ill?

Dear JHSPH Administrators,
I am a new Masters of Public Health student in the class of 2013. I have a documented disability (systemic lupus) that is covered under the Americans with Disabilities Act (ADA). I have been working with the JHSPH's Office of Disability Support Services, who have been extremely helpful. However, it appears that John's Hopkins policy, which Support Services is not responsible for, is in clear violation of the ADA.

Under the ADA, institutions are forbidden from "not making reasonable accommodations to the known physical or mental limitations of an otherwise qualified individual with a disability who is an applicant..." However, I have just been told that, in order to park in a garage close to the Bloomberg School of Public Health, I will be required to pay the usual $120 parking fee each month. I have no alternative but to park in this garage, as I am so photosensitive (due to lupus) that walking any distance in the sun to get to my car makes me extremely ill. Moreover, I unable to use public transportation due to the fact that I am extremely immunocompromised due to the immunosuppressant medications I take to stay alive. (I have been explicitly advised against using public transportation by my physician). So, in effect, I am being charged $120/month for having lupus. This does not seem reasonable, as I am a student, and having to pay an extra $1320 over the course of my program at John's Hopkins constitutes an undue financial hardship.

This situation is clearly both illegal and morally wrong. As the #1 School of Public Health in the world, it seems absurd that your own policies discriminate against disabled students. Instead of encouraging such students to use our experiences as disabled individuals to improve public policy, you are penalizing us for attending your institution. This is unacceptable, and needs to change.

Respectfully yours,
Dr. Sam Hyde, M.S., PhD