Recognition is essential for patients

I'm really looking forward to Ellen's series on, Expert Answer: When friends & family don’t understand migraine. From the introduction: “I am a breast cancer survivor. Compared to my experience with chronic Migraine, breast cancer was a breeze. All the information is out there. Everyone understands cancer and its treatment and has compassion for the patient. The stigma of it is gone. The therapy ends eventually – there is a light at the end of the tunnel. The pain of the disease is treated vigorously. Migraine is nothing like breast cancer. The pain is so much worse and usually undertreated, nobody understands the disease or the patients, the stigma is overwhelming and there is no light at the end of the tunnel because our disease doesn’t go away.”

I had a funny moment out with my friends at coffee. We had a new person introduced to our group, who happened to be getting his PhD in neuroscience. I asked him if he understood the pituitary, and confirmed it. I told him what I had and he expressed genuine alarm and concern. He launched into a series of questions that I demurely answered for him (just the anterior pituitary, not the disease that makes you thirsty all the time, thank God). But it wasn't so much this gentleman's reaction that was so amazing. What was amazing is that all my other friend's faces had fallen to the floor.

They hadn't known just how serious it was. These were folks who only knew me A.D. (after disability). And the more this guy asked me questions, and the more impressed he grew, the more I could feel the respect for me in the room grow.

I work really hard to make this look good. I can't do it all the time every day, but I can pull off for an afternoon. I can pull it off for doctors appointments. I've learned a lot of streamlining techniques for chores through the years. I'm like a race horse: I'm good in short, powerful bursts. But then I need lots of rest. They don't see the struggle in the down time. I hide it. Not that I'm ashamed. I just know it's a lot to handle, and not everyone is up to that. It's hard to be a caregiver. Hallmark doesn't have a card section for: "Get well, maybe?" As a society, we really don't know how to handle it.

I embrace that I don't look as sick as I am. I've learned not to blame anyone for not understanding. It never helps to try to explain. It looks like boasting. It doesn't help to get angry. That just makes me miserable and difficult to be around. It sure doesn't help to sulk or get involved in self-pity. Yeah, I've got one hell of a disease. How about them Cardinals? What about that epic night in baseball??

I wanna get credit for how well I'm doing, not for how awful I've got it. So I look forward to what this series is going to say. Even at this point in the game, I can still use all the tips and tricks I can get communicating my disease to others.

Still no orders, but made a friend "inside"

I waited a week after the debacle of last week. I called the infusion center. They were very flustered and tried to blame the referring system at first: new computer referral system, can't find you in the computer, blah, blah. But then I interrupted her with the magic words, "Look, I don't think this is your fault." Immediately, she slowed down and listened. We were able to find my file. Yes, there are still no orders for me. But now she is going to call the doctor's office herself to see what is going on.

I'm trying very hard not to think about why this is happening. I've got to leave it a mystery. My conclusions are only going to make me angry. And who knows? Maybe my new friend can straighten this whole thing out.

Moral of the story? Being kind and understanding towards staff really works. And because I waited a full week, that looks good in my favor. The doctor's office plenty of time to straighten this out. I'm not just complaining... I'm complaining with just cause. That won me an ally today.

[UPDATE 11a]
The friend inside came through!!! I got a call from a nurse in my doctor's office. The orders should be processed today. I can call early next week if I haven't heard anything.

[Update 1p]
FINALLY got a call from the doctor herself. She still expects my cortisol to turn out fine and that I'll be able to stop my prednisone. We'll see....

Dear Doctors, please don't make your job my job...

As I type this, I am going through horrible symptoms because of my doctor-ordered drop in my daily prednisone. I get dizzy every time I stand, my hands are shaking, I'm freezing cold on a balmy 80 degree day, and my colon has defected on me. Upon my last visit, I was told to call the infusion center to schedule my test if I hadn't been called in two weeks. Well, I called and discovered there are no orders. Now it becomes my job to call the nurse line to call the doctor to get the orders in to schedule an appointment. It becomes my job to keep on top of this to make sure it gets done so my doctor can get the information she needs. Really??

I hear all the time from doctors blogs and medical journals about how much a problem "patient compliance" is. What about how non-compliant doctors are? I took actions in good faith. I'm subjecting myself to an increase in symptoms because that's the only way to get a fair test on the pituitary-adrenal axis. I get that. But I would like good faith in return. If you say your going to order a test, order the test. My job should not be to make sure you do your job.

That just makes me lose faith in the system that I need. That makes me lose trust in my doctor's ability to take care of me. I have to wonder if I did something wrong, some subtle body language, something... that made me receive this kind of poor treatment. And if I have to worry about it happening in the future.

It's not fair that I should have to do this. It's not fair that it becomes a crisis on my part due to procrastination on your part. But I have to do it or I don't get treated. I am your hostage.

You're worried about liability. I'm worried about my ability to live. When I'm sick, I'm frightened. When you screw up it could cost you your job. But when you screw up it can cost me my life! Respect that, please. When I have to do your job for you, that only scares me more! What else are you going to miss when I'm not looking?? What else could you forget to do??

Please, try to see it from my point of view. Step out of your troubles for a moment and put yourself in my shoes. You know what looks bad from your standpoint. Don't you think I could say the same? Take responsibility for your practice. Have a little integrity: say what you mean and mean what you say. Hold up to your end of the deal.

That's fair, right?

And apologies go a long way....

Suck it up, Princess...

Wanna make your disease laugh? Tell it your plans. It's only been three days on one less milligram of prednisone, but already I'm in trouble. My digestion is not good. Each morning I wake up with terrible gut pain that saps all the energy from me. The exhaustion has stretched my morning routine from one hour to three. My sinuses and breathing are worse. And I'm cold. All. The. Time. My mood, reasonably, has tanked.

My mantra is: "Suck it up, Princess. The only way out is through."

It's frustrating and sad to have to go through this. You would think that the labs and tests from the other doctors would mean something. You would think that since all the other test came back negative, we'd want to rethink the theory. You'd think a doctor would want to avoid making me sicker. And you'd be wrong.

The world is not fair and yelling and screaming doesn't make things any better. It's a waste of energy that I don't have. I can't afford the luxury of anger, even if I am right. Challenging the authority of the doctor will get the door slammed in my face fast.

I also have to do this so I can prove to her I will "follow doctor's orders." It's a stupid game, but my doctors need to know that I stick by my promises even when no one is watching. I've got to play by their rules to get the treatment I need, even if that means unnecessary suffering.

My dad is a lawyer who does criminal defense cases. He's told me what being on probation is like. A probation officer can go so far as to demand a woman stop wearing make-up. They'll jerk you around and make your life miserable on purpose. It's all a test. Can you obey the rules? Or are you going to be sneaky and selfish?

I don't like being treated like I'm on probation just because I'm seeking help from medical professionals. But there are. No. Other. Options. I've got to have treatment so I've gotta suck this up, pull up my Big Girl pants, and soldier through.

And I've got to do it calmly and without hysteria, which is really difficult when symptoms flair. Even though it's completely reasonable for me to be upset over what I'm going through, I can't behave that way. No one can see what my disease is doing to me. When I get upset, it appears to be over nothing. Being emotional only makes me look like a drama queen.

I know I will be proven right. I can remember my calm and not be upset because I know the truth will come out. I can be patient with my doctor's bad theories and mistaken beliefs. She's gonna have to eat crow eventually. And if I want her to admit her mistake, I need to show her that I won't blow up at her. That means dealing with the current situation with dignity.

I am better than this disease. I am better than my doctors skepticism. I can do this. I can get through this to get the proper care.

And I can make it look awesome.

Chronic Illness Cat (repost)

I don't often repost stuff because it feels like slacking off in my own writing duties. But this made my night...

Chronic Illness Cat (The Meme You'll Thank Me For) [warning, adult language]

There are a number on there that hit home and are real gems: "Rent. Groceries. Medication. Choose TWO." And I've had doctors who didn't know how to spell my meds before, too. lol

That about sums it up nicely.

Care for the caregivers...

On the eve of the close of National Invisible Chronic Illness Week, I'd like to focus instead on caregivers. Whether you are a spouse, significant other, adult child or parent caring for a chronically ill person, your partner's disease will take a toll on you too. Relationships can be difficult when both partners are healthy. A chronic illness can make a relationship much more stressful. We know the person who is ill needs support, but caregivers need support too. Extra burdens, physical and psychological, are shared by both partners. And they are often different burdens even though they share the same source. This is for the caregivers.

The first thing to realize is: There is no negotiating with a disease. We can't control or cajole it. But we can contribute to it for good or bad, depending on how we react to it. The key thing to remember is not to take personally what the disease causes. It's like any other force of nature: the tsunami, the hurricane, the disease... None of them care what kind of havoc they sow in our lives. It's sad that it happens, but what can we do? Our only option is to pick up the pieces of our shattered lives and try to make something new. When we can see the disease as something that isn't malicious or evil, we can gain a sense of constructive peace over the situation. It's like any other hardship. We put our shoulder to the wheel and try to get through as best we can.

The second is something to remember, like a mantra. Remember that you are under duress. Remember this is a marathon, not a sprint. We need to take extra special care of ourselves. We don't have a lot of the luxuries and freedoms that other people have. The extra work is physically draining. We need to practice patience regularly. This is psychologically draining. Exhaustion can make tempers shorten and that's never helpful.

We need to make sure we give ourselves attention and care so we then can give care. Extra rest and relaxation are necessary, but not always an option. Activities we used to enjoy as stress release may not be as available as they were before. Luckily, we live in an age where stress is common, so there are several resources available to learn about coping mechanisms. But one that I would like to emphasize is quiet meditation. It doesn't have to be anything fancy; just sit and do nothing for a little while with no distractions. Find a peaceful place and just relax for a little while. It doesn't have to be long. Ten minutes here or there can be just the pause we need.

We also need to be careful we don't volunteer for unnecessary stress. Being a caregiver can be more than a full-time job. Taking on other unnecessary responsibilities may not be the best thing. If an outside activity brings joy and a sense of accomplishment with that responsibility, that's great. But if the outside responsibilities are draining with little return, it's probably a good idea to stop. Stress can be exciting, but an illness makes enough excitement on it's own. We need to make sure our activities outside of care giving enhance our lives.

Detachment, in my experience, is a wonderful tool for dealing with stressful situations. When I am able to detach emotionally from the situation at hand, I can make more clear-headed decisions. The difficulty is, in the extreme situations that a chronic illness makes, it can be nearly impossible to hold back an emotional response at that moment. In those times, if possible, we need to allow ourselves extra time for making decisions. Often the situation won't allow that. When it's a crisis, it's a crisis. So we just do the best we can, and work on forgiveness towards ourselves afterwards for any mistakes.

Forgiveness is something we will need to practice a lot. A disease will expose all our shortcomings. If there is an area where we are weak, it will show it. Whether it's bad decision processes, limits on our coping skills, old childhood wounds, physical limitations, what-have-you, the situations the disease creates makes those more likely to appear. We must remember we are only human. St. Augustine said: "I err, therefore I am." Our mistakes are a part of life. We can also forgive the situation for making us so off our guard (going back to not taking the disease personally) and in that way deepen our forgiveness of ourselves and others. It's difficult to be at our best when under duress. We work to forgive ourselves, try to learn from it, and try to do better next time.

I strongly suggest to not be shy of support groups. We're not going to have all the answers. It's common to be overwhelmed. You are not alone. This doesn't mean you have to jump into and participate in a community. There are many online forums where people in our situation have gone before and left their experience, strength & hope. A keyword search may be all you need to see a conversation dealing with your situation. And if you do want to participate, you can post your own questions and receive personal responses. Sometimes a stranger can have exactly what we need to hear.


I hope these have been helpful. If you have any other suggestions, feel free to add them in the comments section.

Good luck.

How do you tell a doctor you don't want to comply with their wishes?

My new doctor expected to show me how my claims for Autoimmune Hypophysitis were misguided. That hasn't happened. She told me that my AH was probably the fault of previous doctors giving me steroids when they didn't realize it, and that created the illusion of AH. She told me that my hypothyroidism was most likely primary autoimmune hypothyroidism, and that my swollen thyroid was evidence of that. One problem: the tests don't support any of her claims.

I do have hypothyroidism and I'm on the correct amount of medication for it. And the tests show that I'm not even borderline autoimmune thyroiditis. My results were less than *half* the minimum for a positive result. It's secondary hypothyroidism, not primary like she predicted. My thyroid problem is pituitary.

I have normal calcium, sodium, potassium, etc. My Vitamin D & B12 levels are fine. Nothing she claims to be really wrong with me has panned out. None of her predictions have come true. And now I don't want to continue with her suggested course of action. That's reasonable, right? But I don't know how to say "I don't wanna do that" without it being a challenge to her "authority."

She wants me to come off my prednisone. That seems like an extremely dangerous plan now. If my problems were not what I claimed, my adrenal glands should start to come back to life. But that's not terribly likely given the current evidence. What's more likely is that as I come off my prednisone, I'll start to get sicker and sicker, and eventually suffer an adrenal crash (which, alarmingly, can lead to coma and death). Um.... That's not something I'd like to risk just to prove a point that's already been proven by other doctors and labs.

The thing I worry about is if I say, "I'm not comfortable with this plan," she'll turn around and say, "I'm not comfortable treating you." It wouldn't be the first time.

I left a message for the doctor to call me.

[Edited to add (Mar, 3, 2012):]
The answer to my question is: you don't. They either mark you down as a non-compliant patient, which gives them grounds to stop treating you, or you vote with your feet and find a doctor that actually listens.

My First Migraine

Ellen Schnakenberg of Migraine.com posted an interesting migraine fact the other day: Most migraineurs have vivid memories of our first migraine.

"It's a shocking occurrance. Our lives change in an instant," she says.

For me it was the same. And when I saw her comment, the flood of memories swallowed me whole.

It was 1987 and my parents had taken us on a historical tour of half a dozen southern U.S. states, following a carefully mapped trail my father had made to show us Civil War landmarks along the way. Part of out vacation was a weekend in New Orleans. I remember it was the night my Dad wanted to see the blues bands play. Everyone was excited. Unfortunately, my father insisted on going into the clubs, even though the music was so loud on the street you had to shout to hear.

It wasn't even ten minutes of standing in that noise that I couldn't bear it anymore. My head was pounding. I wasn't surprised. I didn't think it unusual. But we migraineurs don't tend to think well when we have a migraine, and this was no exception for me either. What I didn't realize was I was a teenager complaining to my parents that their music was too loud. Yeah... that should have been my first clue.

On the way back to our hotel, lights got too bright for me even though it was night on the street. I closed my eyes and had my parents lead my by the arm. When they would tell me of an obstacle, I'd open my eyes briefly to move over or around it, then back to voluntary blindness.

When we made it back to the hotel room, my mother, unfortunately decided to put on perfume. The smell doubled me over in nausea. They opened the windows to air the room out, but it permeated everywhere. I wanted to hide under the covers from the smell and the light, but the heat of the blankets made the nausea worse and everything was off balance. She washed it off, but it was no help.

By that point, I also had a pillow wrapped around my head because normal conversation-level talking sounded like cannon blasts. Thankfully, it wasn't much later I was able to pass out.

I was 15.



Do you have any stories where illness changed your life in an instant?

Sjogren's Syndrome stops powerhouse Venus Williams

BBC Sports News recently reported that: American Venus Williams is out of the US Open after withdrawing from her match against Sabine Lisicki due to illness. Specifically, Sjogren's Syndrome (pronounced SHOW-grins): the autoimmune disease once thought rare, but now considered one of the most common autoimmune diseases to date. Unfortunately, most people (including doctors) consider the disease to be nothing more than dry eyes and mouth. While these are common complaints of the disease, it's effects are much worse. And though I wouldn't wish this disease on anyone, I'm honored to have Venus Williams as my spokesperson. If this disease can stop a powerhouse like her, it's obviously no joke.

Sjogren's Syndrome is an autoimmune disease that affects the moisture producing membranes of the body. That's why dry mouth and eyes are common complaints. But it also affects the digestive track, the lungs, the sinuses, and all of your skin just for starters. Sjogren's patients generally don't sweat much, and that makes them highly susceptible to heat stroke. Additionally, it attacks the moisture production in muscles, tendons, and joints which can cause severe pain and MS-like nerve symptoms (tingling, burning, numbness, etc.). The New York times featured the story of a woman with Sjogren's in The Doctor of Last Resort, whose symptoms had made it impossible for her to walk up the steps in her house of over a year. It's one hell of a disease, and it is estimated to affect up to 4% or 270 million people world-wide. By comparison, that's the entire US population, minus California.

Autoimmune diseases are when the body's immune system mistakenly identifies some normal aspect of our body as an "enemy combatant." It starts producing antibodies (i.e., against the body) and attacking healthy cells. Illness results, and depending on which type of autoimmune disease you have, it can kill you. Usually preceded by steady decline that slowly robs the patient of the ability to thrive.

I salute you, Venus Williams. You make this look awesome...