Am I or Will I Get Better?

I get asked often, am I getting better? Have any of my doctors found a miraculous treatment for me?

The answers are and always will be a big fat 'no'.

There are different kinds of ailments out there. They are (in my non medical terminology):

• Acute - an ailment which happens and gets better. Think a cut, the flu, appendicitis, Lyme disease.
• Chronic - an ailment which occurs and lasts and lasts and lasts. Think things like arthritis, fibromyalgia, degenerating disks, etc.
• Terminal - an ailment which will kill you. "Terminal illnesses or infections are considered incurable when there are no conservative therapies available which will eliminate it from the body." Think cancer*, untreatable MRSA infections, etc. 

My medical history includes several chronic ailments that have no cures to date but are treated to minimize deformations and relieve pain. These are: rheumatoid arthritis, degenerating disk disease, and fibromyalgia. Then I get to add a couple of cancers on top of that as well as significant injuries which are not repairable (think bad knees). Every so often I get an acute ailment like the flu to add to the fun.

My treatments all focus on making me feel better. But nothing will cure all of me. So no, I will not get better. But thanks for asking.

*Cancer gets the asterisk here because sometimes cancers are treated as chronic after standard treated. You can never be sure you got all the cancer out of your body. 

Non-impartial doctors

Do I expect my doctors to be my best friends? No. But I do expect them to impartial and have no biases when treating me. I try to do my part - show up for appointments, take my medicines are directed, and take fairly good care of myself. I have had a few doctors which I have felt I didn't really gibe with but in my mind, I really want good care, not buddy-buddy.

A new study (because we always need new studies) shows that more than 40% of doctors state they have biases to certain groups. Some of those include obese patients, patients who do not speak English, or have emotional problems.

"The most common reason that doctors said they stereotyped patients was because of their emotional problems, which elicited biases among 62% of physicians, followed by their weight, which 56% of male and 48% of female physicians said provoked biases for them. Other triggers were patients' intelligence, language differences, insurance coverage, age, income level, race and attractiveness."

Hmmmm..... Well doctors are human beings and I think every person would admit there are just some people that make them recoil a tiny bit. I admit I am not perfect and have my own cringe factor for some people - like the scary homeless guy on the subway yelling obscenities. (I realize that their problems are probably worsened by lack of medical/psychiatric treatment and they should not be blamed for their issues but I just don't want to sit next to them.)

The problem is that when doctors have biases, whether conscious or subconscious, the patient usually gets a lower standard of care. That's a real problem. Its not ethical for doctors to provide for different standards of care for different groups but if its a subconscious bias, how do they stop themselves.

Is that pain only in your brain?

I have been pondering this question for a couple of days. Some one posted a comment on my blog the other day and asked about this:

"How do you know when some of these pains are not in your head? I have mistook mental discomfort for physical problems."

I have often pondered this question for myself. Is what I feel real pain or is my brain making it up? How can I tell all my pains are real? Am I over treating my ailments? How can I have so much pain? I sometimes run little experiments with myself (don't tell my doctors!) to see how my medications are working and how my pain levels really are. Sometimes I just forget a medication and I often quickly find out what is real and how much somethings hurt. Other times I will delay taking my next pills and see how I am feeling.

I thought about this, hard. I know if someone has a limb amputated they often may have 'phantom' pains. The missing leg still produces feeling of pain even after it is gone. I know there are treatments for this as well.

But I also feel strongly that doctors should never ignore patient's statements on having pains. For years, male doctors often dismissed women's complaints on menstrual cramps. They were proven wrong. But if a patient complains of pains often and a doctor does nothing, you need a new doctor. 

However if its the other way around and the confusion is as the commenter noted above - mental discomfort being mistaken for physical pains - that is a different problem all together. In quickly asking the all-knowing Dr. Google, you can find that it is a recognized emotional issue that causes significant anguish.

In my non-medical opinion, if there is a question as to whether the pain is real or in your head, you would really need to do some personal and medical research, working with a good medical professional who meets your needs. Because even if the pain isn't real, there is still an issue that needs to be treated.

My cynical side is showing again.

Was I supposed to climb a mountain or something for some ailment awareness? I didn't. But apparently a lot of people do that kind of thing. You can find countless story about another person who climbed a mountain, ran a marathon, bicycled some long distance or did something significant to raise awareness for an ailment.

How does climbing a mountain help with an ailment? What are you doing on a mountain top that could do anything to help someone with that ailment? Other than let the person with the ailment feel disappointed that they could never do that any more? Please explain.

I didn't do any of that. I would never do any of that. Physically I can't. And emotionally I do not think those efforts are much needed. Honestly we do not need any more awareness of breast cancer. Period. For my other ailments, maybe some awareness could help. But awareness doesn't do squat.

What does help is research and treatment.

If you want to help with an ailment on a big level, raise some money for research and treatment. If you want to make the news headlines for doing something, raise a lot of money, send out a press release and invite the local media.

Or if you don't want to make any headlines and can't afford to spend any money, spend some time with someone who could use help. Is it a ride to a doctor appointment? Picking up their groceries? Mowing their lawn or raking their leaves? Or if you can't do any of that, drop by and chat or call them on the phone.

Skip the awareness crap and efforts, figure out how to go direct to the person coping or to research and treatment. Awareness doesn't do crap.

I'm so smart I could diagnose myself

Yesterday will probably go down as one of the not so greatest days in my life. Why? Because I pretended I was a healthy person. And it didn't end up so well.

Allow me to provide some of the story. We had to dig up a lot of the plants in our garden because our retaining walls are collapsing and we have to pay big bucks to a mason to fix them. It has been very hot and dry here for the past few weeks. 90s for the last few days even - which rarely happens in Boston. My poor plants which should be in the ground and in the shade are in pots in the back yard in the hot sun.

I noticed yesterday that some of them were very dry and wanted to water them. The spigot in the back yard was put up by giants and I have to stand on something to reach it. I pulled out my usual little 12" high little table to stand on. As I reached up, the table collapsed and I felt my knee bend sideways. That was a very bad moment. No one was home but the mason's assistant but he came to help me get back to the front door and inside. I could hobble.

But because of my extensive medical background, I knew exactly what to do. I went to the freezer and got an ice pack. Then I picked up the phone and called my doctor's office. I knew I needed an x-ray and possibly more. They suggested I go to the walk in clinic last evening but I declined and asked for an appointment today instead. But as I sat with my knee elevated it really started to hurt (even through all my RA/fibromyalgia meds) and I asked my husband to take me to the walk in clinic.

I saw a doctor and got an x-ray as I expected. The bones look fine (as I expected) but the doctor thinks there is ligament/muscle damage (as I also thought) and referred me to an orthopedic doctor. This is exactly as I assumed would happen. I need to call today if I do not hear from them by noon to get to see a knee doctor. (Maybe I should have just called my knee doctor first -  yes I have a knee doctor, and an ankle doctor, and many other specialists.)

They did send me home with a knee immobilizer, a totally worthless piece of equipment as it forces me to overwork my hip (and my bursitis) and causes more pain than is in my knee. They also recommended crutches or a cane, both of which I declined. But I did ask my husband to find one of the crutches in the basement as it turns out I need it for stability and weight bearing.

So one moment of pretending I was healthy allowed me to sprawl on the backyard in pain. The good side? I really need a positive here. I have a reason to sit around on my butt all day (except going to the dr and possibly getting my nails done) with an ice pack on my knee during this 90 degree weather. I am not discussing the downside at this point because I am pretending it doesn't exist. Denial? Yes. But I did know what to do and what I needed medically right away. 

What about no treatment?

I read this article a few weeks ago on the other option in a medical diagnosis, what if you didn't treat? I mean seriously just skip the treatment options? With a cancer diagnosis, they give you a list of treatment recommendations, but never say just don't treat.

But if you read the article, you will learn most doctors have DNRs and do not want to live if given an incurable diagnosis. I am leaning more to this side than ever.

I am on medications to treat the side effects of my medications. I am still coping with long term side effects of numerous surgeries, chemotherapy, and radiation.What if I skipped the treatments? I ponder this one and need to remind myself at doctor appointments to ask 'what if I chose not to treat?'. A doctor 'recommends' and 'suggests' but never 'requires'.

I mean if I am in extreme pain or coping with an infection, I am sure I will opt to treat. But sometimes I need to ask, what if I didn't treat? I am not one to run to the doctor for a sniffle and am concerned with adding more drugs to my daily intake. Every time I add one, I need to check for allergies and interactions.

If I had another cancer diagnosis, I think I would have a very serious discussion about treatment side effects, adverse effects, and long term effects. Quality of life vs longevity is a very important discussion.

Removing the 'crap shoot' aspect from RA treatment

Right now when you get diagnosed with rhuematoid arthritis this is the standard procedure:

1. Start with prednisone and plaquenile or a sulfa drug. Prednisone is used to reduce current inflammation for a relatively short period of time. Plaquenile is an old leprosy (really) drug that was found to also treat RA. But it can take 3 months or more to see the benefit Me? I was allergic to both prednisone and plaquenile. 
2. Oral methotrexate which can take 3 months or more to see the benefit. Methotrexate is the gold standard in treating RA but is also a very toxic chemotherapy drug where it is used in much larger doses. Me? It didn't work. My mother? After twenty years, she developed fibers in her lungs and went on oxygen for a while. Now she is off MX but her lungs are compromised.
3. Injectable methotrexate. One shot every week, unless fighting a cold or anything. Immune system is severely compromised. But it may not work for everyone either.
4. Biologics used in combination with methotrexate. But you can't take them if you had cancer. And after time, they may stop working so you need to switch to another injectable, expensive biologic.
5. New round of RA drugs, including Xeljanz (which is being heavily marketed by Pfizer to me) which is another type of drug.

 With RA, you can only hope the drug they put you on will work. When one stops working, they try something new. When they give you a new drug, you have to wait 3-6 months to see if there is any benefit for you. As you wait, the disease progresses.

The goal of treatment is to put RA into remission and reduce flares of the disease. But this treat and wait system make treatment a total crap shoot as you don't know what will work. And you may wait for a long time to see if it will work.

It sucks.

Since I am allergic to prednisone and plaquenile and I had breast cancer, my treatment options are more limited than the average bear.

But now a rocket scientist has come up with a blood test that will  help take the 'trial and error' or 'crap shoot' process out of  RA treatment. Its about time.

Healing and methotrexate

These days a little thing can do me in for a few days or even weeks. I have had a cold that started last week and lingered into this week. I assume its the same one as opposed to a new cold (or the flu or Ebola). But I am slowly getting better.

I was a good girl and did not take my methotrexate last week - it compromises my immune system and I am supposed to skip it if even a tiny bit sick. I went to the doctor on Saturday for an infected toe. Not an ingrown toenail but an infection along the side of my toe. I have been on antibiotics since then. So this week I also skipped my methotrexate. Again.

Per my doctors since I have been on MX for so long, a certain level has built up in my system. But if I keep skipping it, how long until my levels start going down and my RA starts acting up?

For now, a little cold can turn into a lot more. I just wish I could get heal like a normal person.

What RA does

As I approach my one year anniversary of being diagnosed with rheumatoid arthritis and fibromyalgia (because I didn't have enough ailments prior to then), I can reflect back. Although my mother has had RA for more than 20 years and I thought I was fairly educated on the subject, its different when you are the one living with the disease.

To be fair, I will say I had long since moved out of my parent's house when my mother was diagnosed so I was exposed to less of the day to day issues. For many of those years, I was busy with a career which involved lots of travel and pressures. But now that it is affecting me, I find I have learned a lot more.

I do not know what the standard protocols were for treating RA when she was diagnosed in 1989, but now the protocol is to treat it strongly and quickly to prevent many of the side effects and degeneration that accompanies the disease.

I was promptly put on prednisone for the short term, as a quick acting treatment, and plaquenile, as a long term treatment, and found out I was allergic to both. Then I was switched to methotrexate oral, dose upped, and finally switched to injections in the spring. That was until my compromised immune system caused my husband's mild cold to give me a double ear infection and put me out of circulation for two weeks while I recovered. I had to go off methotrexate to treat my ear infections with antibiotics.

Finally, I have been back on weekly injections for about six weeks and am starting to feel normal, or as normal as I ever will be, again.

Over the year, I have learned all sorts of fun things about RA and how it affects the body:

• This is how RA affects the rest of your body
• It can also cause hoarseness and other laryngeal symptoms.
• RA can have a significant impact on work and relationships.
• Its not just the disease but the treatments that can cause problems with your skin - ones I have include Raynaud's syndrome, bruising, red dots, and increase sun sensitivity.
• My favorite is how RA affects both your hands and feet.

And the treatment for fibromyalgia? Its just treating the pain so we are trying to manage that. But now I have both fibro fog and chemobrain so I can claim brainlessness regularly. I have problems remembering words and names these days and am constantly misnaming things and people.

What do I have to look forward to with RA and fibro? I have blood tests every eight weeks to monitor my blood levels, particularly liver function as methotrexate is hard on your liver. I bruise very easily and every cut, scrape, or bruise takes forever to heal.

In the meantime, as life gives me lemons I keep on working on that lemonade.

Now its my back

Lets return to the 'if its not one thing, its another' category. My back is being very bad lately. When I say bad it is causing me pain of the kind that makes it difficult to remain vertical for any length of time. That makes it hard for me to do things like walking around, cooking meals, cleaning, emptying the dishwasher, going to the grocery store, going to work, and feeding the cat among others. Nothing much. It also tends to hurt when I am sitting or lying down.

What can I do that does not cause me pain. I'm thinking. I'll get back to you when I come up with something.

I think what has happened is that the last treatment to my back has worn off. I have had these fun treatments where they basically stick heated needles in my back between the bones and kill off the irritated nerves which are causing pain. They are irritated because they are being squished as a result of my degenerating disks.

The treatments work for at least a year or so and can be repeated. Even though the nerves are killed off they do grow back but usually less so they cause less pain.

The problem is I am not scheduled to see my doctor until the end of May. I can try to get an appointment sooner but his schedule is usually very tight. Then I will have to wait to get the treatment scheduled which can take another 4-6 weeks.

I'm still thinking of something I can do without pain.

This has been a bad week

This has not been a good week for me and a lot of other people. First off all, the marathon bombing on Monday turned lives upside down. And it seems to be the only thing on network television these days. All my regular shows I record so I don't have to stay up late, have been superseded by more news coverage showing the same things over and over again.

I have a very busy schedule this week. I had a meeting after work Tuesday that went relatively well. I met with my boss at the job I am leaving to talk about transition and was pleasantly surprised to find out they have two replacements for me - which is good for them and makes it easier for me to train people instead of leaving lots of notes.

Yesterday I went to work where there has been a fair amount of stress going on as well. Also, I was out last week so we can just say I have piles of things to do. Then I had an appointment with the nurse practitioner in rheumatology. I had hoped for a quick appointment and a quick trip to the gym before getting my hair cut.

Instead I had a 45 minute wait to see the nurse practitioner - stuck in a waiting room with a giant flat screen tv focused on the bombings and then the federal court house had a scare and was evacuated so all the newscasters could do was conjecture about what was going on and patients and medical staff, kept asking questions. I could not ignore it.

Finally I met with the nurse practitioner and we talked about my tiny medical history before the bad news started. Methatrexate is not working well for me. I can't take the biologics that are TNFs - tumor necrosing factors. This means I will never be able to Humira, Enbrel, and that whole class of drugs.

There are still options available for me that are not the big names but they all involve needles. I have a real problem with needles. My husband said he would help. We will go meet with a nurse and get instructions at some point. (And then he told me last night he didn't really like needles either - I don't think he has a choice in this because I am not sure I can give myself injections.) But that will be next week and I am not worrying about it today.

The one advantage to injecting methotrexate instead of taking it orally is that it is easier on your digestive system. This is good because last night after taking my pills, including my weekly dose of methotrexate, my stomach turned into a giant knot and caused a lot of pain. So I ended my crappy day in the bathroom in a lot of pain.

I just have to get through today and then tomorrow I am going to play hooky with a friend. I need a day off.

Chemo again or just semantics?

I have been emailing back and forth with a friend with whom I had lost touch. His wife had died a few years ago of pancreatic cancer.  I told him that I had RA which is why I haven't been around as much recently. He replied that he has a friend who is on methotrexate - which is a form of chemo  for their RA.

Eeek! I had not considered that Methotrexate was a form of chemo. I take it in pill form weekly so its not like I go for an infusion or anything. I looked it up on Scott Hamilton's Chemocare.com and found out its true.

The thought of being on chemo again had always freaked me out. I mean who wants a port, baldness, and nausea again? But they snuck it in on me. They said it was for RA treatment, they never mentioned chemo. So I guess its easier to cope.

My mother was on methotrexate, at a lower dose than me, for years, and we never considered it to be chemo.

Which brings up a point. If a drug is used to treat cancer, they call it chemotherapy. But if the same drug is used to treat something else, can't we just call it a medication for rheumatoid so I don't have to think I am on chemo again? Doesn't it come down to semantics here?

Medications and me

Medications have a tendency not to agree with me. As a child back in the dark ages of the 1960s and 1970s, if I had strep or an ear infection, the local pediatrician would prescribe Penicillin, the miracle drug. At one point, I remember her saying that I had a sensitivity to  it which I promptly ignored because I was a teenager. I don't think my mother remembers that either..

When I was sixteen, I went on a summer program to Madrid, Spain to study at the University of Madrid. We stayed in a university dorm (with a bar on the ground floor, a convent on the first floor, and a dining hall on the second floor which made the world's best paella once a week at minimum). One day I wasn't feeling well, napped all afternoon, attempted to eat dinner but wasn't hungry and went to bed early. I woke up in the middle of the night with a need to use the bathroom and ended up passing out in the hall outside the chaperone's room. The doctor was called, accused me of using drugs (my little bottle of sudafed was deemed suspect) and found I had a temperature of 105. Their modern medine (this was just post-Franco Spain) was shots of penicillin in my behind twice a day. Some how I survived that with no reactions.

(They were very helpful in taking care of me by leaving a nun in my room 24/7 so I was never alone. The nuns only spoke Spanish - I think they wanted to make sure I didn't take any more contraband sudafed. With a temperature of 105 I couldn't speak a word of Spanish if I tried. I was also given everything at room temperature - so as not to shock my body. And each aspirin table needed to be cut into 6 little pieces and swallowed individually with a sip of warm, flat soda so I would not choke. I did get better after a few days and we never figured out what it was. But I digress.)

I never seemed to get strep or ear infections or anything requiring antibiotics for years (maybe I was really a  healthy person once.) Then in the 1990s I had dental infection and was prescribed penicillin which gave me a full body rash and hives. On a business trip... in Europe. I stopped taking the penicillin immediately and called my dentist when I was back in the US. So no more '-cillin' drugs for me.

Around 2001 I managed to ruin a perfect day of skiing with a tiny fall which resulted in a toboggan ride from some very nice ski patrol followed by crutches and knee surgery. A family friend, and former OR nurse, told me to take two of Vicodin that I had been prescribed the night after the surgery to ensure a good night's sleep. I was up all  night. So no more Vicodin or Tylenol 3 for me - we think its the codeine that causes the problem.

Then with chemo, I was given Benadryl to prevent an allergic reaction to the infusion. I was allergic to the Benadryl which means I really can't take any antihistamines ever.

Last Friday, my rheumatologist prescribed me Plaquenil and Prednisone for my RA. I was up all night from the Prednisone and stopped taking it. When I tried it again on Monday morning, I ended up with a bright red face and rash. We decided I should stop the prednisone for now and stick with the Plaquenil. As the week progressed, my rash progressed. It now covers my face, neck, upper chest, around the side of my torso and my arm pit (which is really the pits.) The suspicion is I might be allergic to both.

Our next step is when my rash goes away - in a week or two (according to the doctor) - she will put me on something else for my RA. I hope I am not allergic to that as well.

Too creepy for me

I am not sure I am ready for the latest in medical technology. Its just creepy. First how does an implanted chip that automatically releases doses of medication either timed release, when wirelessly told to by your doctor, or when something triggers the dose. What happened to taking an aspirin when you get a headache? Or is this for stupid people who don't remember their medications? I use the high tech weekly pill box to manage my medications. And if they implant this thing - the size of a domino (which sounds huge) - they need to repeat the implant when it runs out. No way. Not me. (Chills running down my spine at that one.)

Or if that isn't creepy enough, how about little robots made from your own DNA that are roaming around your body on demand with instructions to kill off or reprogram diseased cells. Why am I thinking of borgs right now? 'Resistance is futile, you will be assimilated.' This is just too creepy for me.

I am waiting for medical advances to solve all my medical ailments but I am not sure I am ready for implants and robots inside me. Icky-poo!

There's no 'I' in team

Many people when faced with an 'icky' (for lack of a better word) medical diagnosis, are sent to a specialist in another practice or medical facility. The problem with that is then there is no team work in the care. The primary care is in one place, specialist in another, surgery is where, chemo where, radiation where? You add it all up and you get patients bouncing from one office to another carrying disks of medical records and getting confusing and/or conflicting information that they need to decipher.

I always thought this was a crazy system which is why all my care is in one hospital. I do know people who are generally treated at that same hospital but at the first sign of cancer, fled to the 'specialized' cancer centers in Boston. They are doing what is comfortable for them at first but then they end up juggling medical advice.

I can't remember what exactly happened at my first diagnosis but I do remember seeing both an endocrinologist and a surgeon and having follow up with both. But that was 30 years ago so I can clearly claim chemo brain.

But at my breast cancer diagnosis, after a positive biopsy with my surgeon, I had a day of doctors - my team of breast surgeon, medical oncologist, radiation oncologist, and social worker - all got to talk to me separately and then they got to talk about me and decide as a team what would be my treatment protocol. And all through my treatment they still talk to each other and read each other's notes.

Now I find out that this team approach results in happier patients. They had to have another study to prove this (but if all these damn medical studies stopped I think there would be lots of unemployed researchers.)

At my breast cancer diagnosis, I was in a fog. My husband was in a fog. We barely knew how to breathe, never mind think and make life changing decisions. This process of a group decision presented to my husband and I was a big comfort. It gave us both the short term - surgery, middle term - chemo, and long term - tamoxifen/AI and radiation. The social worker also gave us some emotional help and one of the best pieces of advice - don't try to figure out the whole process now, take it step by step.

Through that first year, the doctors did talk about me and at appointments, I would hear about a discussion with another of my doctors. Because it was a team effort, I didn't even see a doctor's ego! It was a nice virtual security blanket.

Hospital based treatment

As I have said before hospitals are no place to get any rest. They are also great places to be exposed to germs. Some people think insurance companies kick people out too soon after surgeries but there is something to be said for going home and getting a good night's sleep in your own germ free bed if at all possible.

But there is also the concept of hospital based care vs community based care. We used to have surgery or require extended care and be automatically admitted to the hospital. In the UK, there is now a movement to community based care - basically minimizing hospital stays and treating people in their homes or at local doctor offices. This is seen as a mandatory cost cutting move.

I have experienced this as well as both of my parents. After surgery which left me with a lovely (really yucky) surgical drain, I had a visiting nurse until the drain was removed. The same with my parents, surgery to rehab to home care with a visiting nurse and therapist. Even staying in rehab is not as comfortable as one's own home - shared rooms, shared germs, etc. The only benefit to rehab is getting pain under control and getting more physical therapy - multiple sessions in a day. Visiting nurses and therapists can provide a good level of care in the privacy and comfort of your own home.

There have been times for other surgeries where I have been stuck in a germy, loud hospital room for as much as a week - waiting to get a post surgical infection under control. I am always very happy to go home from the hospital and spend as little time there as possible. In fact often by the time I am ready to leave, I am ready to check myself out before they are ready to discharge me. I think I can be a really bad patient sometimes.

Preventing medical errors

A big part of being a patient is working with your medical team to help prevent errors. As a patient, your part is to speak up and ask questions, tell about how you feel, and participate in your care. The Joint Commission (which is a big health care quiality organizaiton which I had never heard of) has developed a program called SpeakUp with a flyer that anyone who is  amedical patient should read. You can get a copy of it here or read the content below. I couldn't have said it better myself:

Speak up if you have questions or concerns. If you still do not understand, ask again. It is your body and you have a right to know.

• Your health is very important. Do not worry about beingand you have a right to know.
• Your health is very important. Do not worry about being embarrassed if you do not understand something that your doctor, nurse or other health care professional tells you. If you do not understand because you speak another language,ask for someone who speaks your language.You have the right to get free help from someone who speaks your language.
• Do not be afraid to ask about safety. If you are having surgery, ask the doctor to mark the area that is to be operated on.
• Do not be afraid to tell the nurse or the doctor if you think you are about to get the wrong medicine.
• Do not be afraid to tell a health care professional if you think he or she has confused you with another patient.

Pay attention to the care you get. Always make sure you are getting the right treatments and medicines by the right health care professionals. Do not assume anything.

• Tell your nurse or doctor if something does not seem right.
• Expect health care workers to introduce themselves. Look for their identification (ID) badges. A new mother should know the person who she hands her baby to. If you do not know who the person is, ask for their ID.
• Notice whether your caregivers have washed their hands. Hand washing is the most important way to prevent infections. Do not be afraid to remind a doctor or nurse to do this.
• Know what time of the day you normally get medicine. If you do not get it, tell your nurse or doctor.
• Make sure your nurse or doctor checks your ID. Make sure he or she checks your wristband and asks your name before he or she gives you your medicine or treatment. Educate yourself about your illness. Learn about the medical tests you get, and your treatment plan.
• Ask your doctor about the special training and experience that qualifies him or her to treat your illness.

The goal of the Speak Up™ program is to help patients and their advocates become more informed and involved in their health care.

• Look for information about your condition. Good places to get that information are from your doctor, your library, support groups, and respected Web sites, like the Centers for Disease Control & Prevention (CDC) Web site.
• Write down important facts your doctor tells you. Ask your doctor if he or she has any written information you can keep.
• Read all medical forms and make sure you understand them before you sign anything. If you do not understand, ask your doctor or nurse to explain them.
• Make sure you know how to work any equipment that is being used in your care. If you use oxygen at home, do not smoke or let anyone smoke near you.

Ask a trusted family member or friend to be your advocate (advisor or supporter).

• Your advocate can ask questions that you may not think about when you are stressed. Your advocate can also help remember answers to questions you have asked or write down information being discussed.
• Ask this person to stay with you, even overnight, when you are hospitalized. You may be able to rest better. Your advocate can help make sure you get the correct medicines and treatments.
• Your advocate should be someone who can communicate well and work cooperatively with medical staff for your best care.
• Make sure this person understands the kind of care you want and respects your decisions.
• Your advocate should know who your health care proxy decision-maker is; a proxy is a person you choose to sign a legal document so he or she can make decisions about your health care when you are unable to make your own decisions. Your advocate may also be your proxy under these circumstances. They should know this ahead of time.
• Go over the consents for treatment with your advocate and health care proxy, if your proxy is available, before you sign them. Make sure you all understand exactly what you are about to agree to.
• Make sure your advocate understands the type of care you will need when you get home. Your advocate should know what to look for if your condition is getting worse. He or she should also know who to call for help. 

Know what medicines you take and why you take them. Medicine errors are the most common health care mistakes.

• Ask about why you should take the medicine. Ask for written information about it, including its brand and generic names. Also ask about the side effects of all medicines.
• If you do not recognize a medicine, double-check that it is for you. Ask about medicines that you are to take by mouth before you swallow them. Read the contents of the bags of intravenous (IV) fluids. If you are not well enough to do this, ask your advocate to do it.
• If you are given an IV, ask the nurse how long it should take for the liquid to run out. Tell the nurse if it does not seem to be dripping right (too fast or too slow).
• Whenever you get a new medicine, tell your doctors and nurses about allergies you have, or negative reactions you have had to other medicines.
• If you are taking a lot of medicines, be sure to ask your doctor or pharmacist if it is safe to take those medicines together. Do the same thing with vitamins, herbs and over-the-counter drugs.
• Make sure you can read the handwriting on prescriptions written by your doctor. If you cannot read it, the pharmacist may not be able to either. Ask somebody at the doctor’s office to print the prescription, if necessary.
• Carry an up-to-date list of the medicines you are taking in your purse or wallet. Write down how much you take and when you take it. Go over the list with your doctor and other caregivers.

Use a hospital, clinic, surgery center, or other type of health care organization that has been carefully checked out.
For example, The Joint Commission visits hospitals to see if they are meeting The Joint Commission’s quality standards.

• Ask about the health care organization’s experience in taking care of people with your type of illness. How often do they perform the procedure you need? What special care do they provide to help patients get well?
• If you have more than one hospital to choose from, ask your doctor which one has the best care for your condition.
• Before you leave the hospital or other facility, ask about follow-up care and make sure that you understand all the instructions.
• Go to Quality Check at www.qualitycheck.org to find out whether your hospital or other health care organization is “accredited.” Accredited means that the hospital or health care organization works by rules that make sure that patient safety and quality standards are followed. 

Participate in all decisions about your treatment. You are the center of the health care team.

• You and your doctor should agree on exactly what will be done during each step of your care.
• Know who will be taking care of you. Know how long the treatment will last. Know how you should feel.
• Understand that more tests or medications may not always be better for you. Ask your doctor how a new test or medication will help.
• Keep copies of your medical records from previous hospital stays and share them with your health care team. This will give them better information about your health history.
• Do not be afraid to ask for a second opinion. If you are unsure about the best treatment for your illness, talk with one or two additional doctors. The more information you have about all the kinds of treatment available to you, the better you will feel about the decisions made.
• Ask your doctor to recommend a support group you can join to help deal with your condition. People in these groups may help you prepare for the days and weeks ahead. They may be able to tell you what to expect and what worked best for them.
• Talk to your doctor and your family about your wishes regarding resuscitation and other life-saving actions.