The RA Meme - My Answers

This meme is the first for RA and comes from my favorite RA Health Activist Kelly Young, the RAWarrior. You can find her page for the meme here.

So, grab a cup of coffee and sit down to contemplate your own answers while you read mine to the questions she poses. Maybe one of my answers will surprise you:

1. How many other diagnoses (co-morbidities) do you have?
   I cannot count them all. Ignorance is bliss.
2. When were you diagnosed?
   I still don't have a firm diagnosis. I'm told it doesn't matter, the treatment is the same as my other autoimmune diseases and I need to just learn to live with it.
3. How many Rheumatoid Arthritis treatments have you tried?
   It's been so long, I'm not sure how many. More than 5. If you count alternative stuff, more than 10.
4. What kind of a reward do you give yourself after taking any medicine that you hate?
   Hmm, reward - that's a good idea! Usually I have a water chaser - something else I really am not fond of consuming.
5. Who helps you open doors or jars when you need it?
   Whoever is around. I'm stubborn. I always try first. Big mistake *ouch* I feel anyone around me with good hands is fair game.
6. What would your ultimate good rheum doc do?
   Doc would insist pain be adequately treated and work with me diligently to that end.
7. What’s your favorite comfort for RA?
   Heating pad. A good pounding hot shower helps too, since I don't have a hottub. Daughter is in therapeutic massage school, so next year my answer will be - a massage!
8. What was the hardest thing you have done since being diagnosed with Rheumatoid Arthritis?
   Look for a doctor to help me get through it or, maybe trying to get adequate pain control to make my life livable. Both are arduous things to endure and I wouldn't wish it on anyone.
9. What’s your biggest RA-related fear?
   That the pain will become permanent and unbearable and there will be nothing left for me to try.
10. How many pills do you swallow every day?
    Only about 5 pills, give or take. Then there are the liquids, the shots and, well *other* ways of getting the other meds in me.
11. Something surprising that you wish insurance would cover for Rheumatoid Arthritis patients?
    A bed so I can sleep through the night, which would help everything else too. Water therapy, specifically a hot tub. Massage therapy at least weekly.
12. What do you wish people knew about Rheumatoid Arthritis?
    That it is an autoimmune disease and that the pain does not go away, even with meds - provided we could get the pain meds we need in the first place. That it is such a terrible struggle for pain relief. That we have to make a conscious decision every day how to live our lives and manage to do it with the grace they see, despite the fight they cannot understand.
13. What would you like to say to your RA? I was taught it's impolite to swear in public o.0

Thank you Kelly for some great questions! I can't wait to see how others begin to answer them too...

To be, or not to be - health and the Good Samaritan Law

cenario 1 - A bystander is in a park where a child is having a life threatening anaphylactic reaction. The ETA on the ambulance is 15 minutes. The bystander carries their own epi-pen which could:

1) potentially save the child's life
2) potentially set him/herself up to be sued

The bystander has a choice - to step in and help, become a Good Samaritan... or not.

What would you do?

Many states have a law designed to protect those who may come upon a person needing emergency help. It's usually known as the Good Samaritan Law and it is designed to remove the fear they (the good Samaritan) may end up in court if things don't go quite right. These laws are in place so when you are a victim needing emergency action, those around you will not be afraid to help you.

Scenario 2 - A bystander who has had training as a First Responder is in a park where a child is having a life threatening anaphylactic reaction. The ETA on the ambulance is 15 minutes. The bystander carries their own
epi-pen which could:

1) potentially save the child's life
2) potentially set him/herself up to be sued

What would you do?

Either scenario could end in a legal nightmare. How much of a nightmare depends upon the particular laws of your state.

Scenario 1 - In my state, not only could I be in trouble for using my own epi-pen on someone else (it is a prescription drug) but I would be doing it as a 'non-trained' medical person. No matter that I know how to use the epi-pen from my personal experience, I am not a doctor or nurse.

Scenario 2 - In my state, not only could I, as a First Responder be in trouble for using my own epi-pen on someone else, but because I am not a nurse or doctor I am restricted from giving any medications to a patient - even their own. I cannot even give sugar to a diabetic in an emergency, or a heart attack victim his own nitro tablet.

While going through First Responder training, we debated this very situation. Legally it is a nightmare situation, but most importantly to me, morally it is a nightmare. I was honest and told my instructor that I was not sure I could stand by and watch someone die when I had something to help them in the bag at my side. Her response was that there was no way she could tell us it was okay to help someone in this situation. I can however, find someone else to administer the diabetic's dextrose to him/her, or that cardiac patient their nitro (preferably a family member), or if the anaphylactic child has an epi-pen and I can find someone else who will actually stick the child, or the child can stick him/herself with their own pen... then we are okay. The trick is finding someone who is ready to take on the legal implications of being that Good Samaritan.

At the same time, my instructor emphasized, that to avoid legal problems, remember to always do what is in the patient's best interest at the time.

Hmmm... To me this is the very definition of a dichotomy.

To me this is an unthinkable situation, yet many of my fellow responders have stories to tell when they were faced with just such a situation. Only one ended in litigation, but when you are that one person it's everything to you. Defending yourself in a lawsuit, even a bogus suit, is expensive - - life changing expensive. You risk everything you and your family has.

So, what do you do. The child can't breathe. He is blue. In 15 minutes he will likely be dead. You have 60 seconds to make up your mind...

Do you give the injection and take the risk? Why or why not? What are your thoughts?

5 Tips for the Newly Diagnosed Chronic Illness

As a Health Activist who tries to be active in several online areas, I have found through the years that I find myself saying many of the same things over and over again. It's not that I'm being pushy or have an agenda... well, perhaps I guess I do.

I see patients suffering, especially in the initial stages of diagnosis. When I've been there and done that I don't want to see them have to go through the same trials and errors, so I try hard to pass on the information that changed my own life, and could change theirs...

My 5 tips for the newly diagnosed chronic patient

1. Ask for and keep paper copies of all doctor's office visits, but especially lab reports and imaging reports.

Stash them away in a special folder with your name on it, or a three ringed binder for future reference. Because you have done this, you will no longer have to wait for precious records to be transferred in case of emergency or physician change. Sometimes labs and records are misplaced. Sometimes bloodwork accidentally wasn't run at all. With this information you can check back knowing what labs should have been done and cross reference with those that you have results for. You may notice flags that were not seen in your doctor's quick once-over and this gives you the opportunity to ask about them. You will know nothing has been missed or overlooked. Two weeks is usually plenty of time for all labs to come in and be reviewed, so make it a habit to call for copies then. You can keep an eye on your progress and will be more likely to notice patterns than either your doctor or their staff. You are the expert of you. My doctors know that when my labs come in, I will ask for a faxed copy to be sent to me. It has become automatic for them to do this.

If you have trouble getting these reports, usually asking the staff "Have you read the HIPAA laws recently?" ... is all that is necessary to get quick action. That being said, I've had to go as far as hold payment of my bill hostage more than once, and even contact the CEO of the major metropolitan hospital in order to finally get the needed records. Don't be afraid and don't be intimidated. Sometimes making like a bag of cement in a doctor's office (show up, sit down, and don't leave until you get what you came for) and standing up periodically in the busy office (full of other patients) to politely ask "Are my records ready yet?" is enough. Office staff will not want to be impolite to you in front of other patients.

For more information how to make your own Personal Health Control Journal, see this series.

2. Maintain a list of current medications and allergies, or past or present medical conditions.

As a first responder this is always the second thing we ask for. Knowing what medications are being taken, when they were last taken, and any allergies (yes, this includes foods, inhalents, contact allergies etc) can be life-saving. Keep the list as the front page in your records binder or folder for quick and easy reference, and don't forget to update them regularly. The list should include current dosages and the times these medicines are usually taken too. Medical history is vital, vital, vital. Knowing that an out of breath patient had chest pains a month ago, or that a stroke patient banged their head last week could be vital clues you may not think are relevant, but your doctor will be able to piece together to determine appropriate testing or treatment.

If you have had adverse reactions (not allergy) to medications, keeping a list of these reactions and what caused them can also be very important. Knowing what medications you have had in the past that didn't work for your condition may seem superfluous, but after 10 yrs time goes by, you will be hard pressed to remember them yourself without prompting. This knowledge can save much time and money later.

3. Take a list of questions and/or concerns to your office visit.

Tell your doctor the list, or give it to him/her at the beginning. At the end of the visit, go back through and very quickly reiterate the answers from top to bottom to be sure you understand instructions correctly. Don't hesitate to ask the doctor to write the answers for you as you run thru the list, or write them down yourself.

The average office visit is from about 7 - 15 minutes. A little small-talk is important so you and the doctor can get to know each other, but the biggest mistake most patients make is in waiting until the doctor's hand is on the doorknob before getting to the real reason for the visit. This is exasperating for your doctor who at once wants to be helpful to you, but is also trying to be mindful of his other patients and their needs. This list will help to keep you both on task.

4. Bring a personal advocate with you... or a micro-recorder.

A personal advocate is a friend or relative, or even a neighbor. I've written about personal advocates in more detail here. In short, an advocate's job is to sit by you during the visit and write things down. They should be able to help you remember questions to ask and any important details. They can hold your hand if you need it. They are there to back you up when you tell the doctor something that may be confusing. Doctors who tend to be rude will be less likely to show that side when there is someone else in the room. The same goes for patients. Advocates can help to make the entire visit go more smoothly.

If you have no one to go with you as an advocate, be sure to bring a micro-recorder. Each state has different laws dictating the use of these devices for legal purposes, but most doctors will be very open to their use if you tell them at the beginning of the visit that you are using one to help you remember what is said. If the doctor is not open to using one, my advice is to get another doctor.

5. Remember that your doctor is a human being first, and a physician second.

Being human means we make mistakes. We get frustrated at times, even angry. We appreciate being appreciated. We have lives outside our work, and families too. We need a little off-time every once in a while. Sometimes we need to vent. We have good days and bad days. We are not perfect, although we all do try.

I urge all chronically ill patients to remember that most doctors want to heal us. When we have a disease or disorder that can't be cured, it is frustrating for patient and their doctor. It is common for a doctor to see particular names on his schedule for the day and begin to dread those visits - not because he dislikes the patient, but because he feels helpless to fix the problem. His job is to fix things, and he can't.

Patients, use small-talk to find out your doctor's birthday and send him a card or a batch of cookies. When his anniversary rolls around, drop off a rose to the office. When Christmas/Hanukkah/Quanza etc season is here, thoughtfully wrap something up and give it to your doctor and his staff. Cards are great too - anything to acknowledge the people and the effort that goes into your care.

Got a difficult doctor with disrespectful staff? These are the offices that need these personal touches the most. You want to be remembered for good things, so do something memorable! You want them to look forward to your visits? Then do something that gives them a moment of joy and happiness while you're there. It's not difficult!


This post is my September entry in the Health Activist Blog Carnival. If you're interested in participating too, you can read all about here: http://blog.wegohealth.com/2010/09/new-health-activist-blog-carnival-back.html

Candida: Autoimmune Diseases and their Treatments

Candida is a yeast/fungus that is normally present in our bodies - in our intestinal tract aka gut. When Candida escapes the gut and travels throughout the body, it's called Systemic Candida. Systemic candida can be a serious problem.

Those with adequate immune systems and diets don't usually find they have much of an issue with candida because our bodies fight it off adequately and we don't suffer many symptoms. However, many autoimmune diseases are treated with therapies that encourage the growth of candida, especially oral and vaginal candida. I know Sjogren's Syndrome, Graves' Disease and Lupus are three of them. Do you know of any others?

Candida itself has been implicated in many disorders and diseases including autoimmunity and even cancer. It's connection with inflammation is very clear. Which is the chicken and which is the egg? I think it's difficult at best to discern, but we're trying!
Candida is a buzz word within many health communities.

Here is a short discussion on the AARDA (American Autoimmune Related Diseases Association)

**Have you had Candida problems since beginning your treatments, or perhaps directly related to your autoimmune disease?

**How have you treated your candida most successfully?

**How do you deal with the online hype re: candida infections? Do you believe them? What is the most helpful candida site you have found?

**What are our doctors saying?

Here are some helpful sites I've found discussing Candida:

National Candida Center
The Candida Diet
MedicineNet.com
The Lupus Site - infections
Daily Strength - Sjogren's Syndrome Forum discussion
The Environmental Illness Resource

Keeping Myself in the Dark

Autoimmune patients frequently are told to stay out of UV light. Lupus and Sjogren's patients particularly, although other autoimmune diseases also can result in dangerous and painful flares when sunlight damages cells and causes an immune response.

When I was younger, I would go out into the sun a lot. I'm an outside girl and I hate being cooped up inside. Even though I do actually tan very easily, I would go outside and come back in with inflamed skin that itched. Sometimes it would turn a little pink, almost like a
sunburn - but different. Not bad though. Because I had that first diagnosis of Lupus, I assumed that's what it was. Then I was *undiagnosed* with Lupus (blunder) and the rash was then a mystery. Eventually the rash turned into nasty blisters and my skin would come off in chunks - so not attractive, and surprisingly painful. My skin got thick and itching was a constant battle for me. When I was re-diagnosed with Lupus I was warned to stay out of the sun at all costs. I began to stay inside, but even then it took many months to heal and for the itching to stop. My skin is still thick along my neck and upper chest - a lasting sign of what I went through for those months.

I found I flared when going into stores for long or if I drive for more than an hour or so, regardless if I have sunscreen on. The lights in stores are very bad about producing uv light waves that hurt autoimmune patients. I already wore sunglasses because of serious intractable Migraines triggered by fluorescents and other types of lights. I began to wear sunscreen, but paradoxically found that it also made me sick - some chemical I suppose
I don't tolerate well.

Then we decided to get really serious about it. We had lived for about 10 yrs or so with 'attractive' black trash bags hanging in the windows of the rooms I frequented like the office and bedroom, in an attempt to block all the light. It worked, but just so you know, this is an extremely unpleasant way to live. I kept thinking I would get better and we could take them down and live normally again. That didn't happen so we removed all the windows in the house and had them replaced with extremely low UV, tinted windows, and for the first time in years I could open my curtains and see outdoors again! I wish I could convey the joyful feelings that went through my mind when we changed out those windows! I had always taken windows for granted, but I don't anymore.

When I go outdoors or into stores I wear my long hair down around my face (I can't tolerate hats), and long sleeves. Sometimes gloves. Never shorts or flip-flops. Although I have an in-ground swimming pool, it hasn't been used in 3 years which makes me almost want to cry as I used to swim every day from the time I was not quite 8 yrs old. I try to go
outside only in early morning or at dusk and try to keep my outdoor time to a few minutes instead of hours.

I'm always looking for new ways to be able to go outdoors or enjoy the sunshine without actually hurting myself.

How do you keep the uv rays from causing problems? What are your favorite products? Techniques? Tricks?

Sjogren's patients - do you know what's in your Restasis?

Sjogren's syndrome is an autoimmune disease in which the body's antibodies mistakenly attack healthy cells instead of invaders like bacteria or viruses. In the case of Sjogren's, the areas that are under siege typically include exocrine glands - the glands that produce substances that go to the outside of the body. Examples of things exocrine glands produce are:

Tears
Sweat
Saliva
Stomach acid
Protective oils in the skin
Mucous

One of the worst parts of Sjogren's is dry eye. In Sjogren's, the dry eye can become so severe that damage occurs to the eyeball.

Typically, Sjogren's patients are first advised to use artificial tears products when their eyes begin to feel gritty or dry, as well as taking environmental precautions to reduce their symptoms, including eliminating medications like anti-cholinergics that may further dry the eye. Eventually this is often not enough. The next step for many patients is the addition of a product like Restasis.

Although I always encourage patients to be sure and read all the information they can about a drug, often times it's difficult to find the really important good stuff hidden within all the jargon. That's what this post is designed to help you with. I'm going to assume that, if you're reading this and using Restasis, you already know the basics of how to use it and its contraindications etc.

Restasis is essentially Cyclosporin in a special carrier - Castor Oil.

Cyclosporin

Cyclosporin is a drug designed to suppress the action of the immune system. It's first use was as an anti-rejection drug for transplant patients. When put into the eyes, it's thought to suppress the action of the antibodies in the conjunctiva and goblet cells which lowers inflammation in the tissues there. The drug is powerful and can cause some fairly serious side effects when taken internally. Just because you're putting it in your eye is not a reason to dismiss those potential effects. it may take from weeks to months to see maximum benefit from the drug, so have patience. Unfortunately, research showed that only 15% of patients taking Restasis showed improvement, and 5% of those taking the drops without the cyclosporin added to them also received relief. More about that later. That being said, the company states that there is a high level of satisfaction among patients taking Restasis.

There are medications that should not be taken while using cyclosporin, and some of those are widely used in the treatment of autoimmunity. One glaring example is anti-inflammatories. Check your packaging instructions and be sure your doctor double checks your other medications. Additionally, use of grapefruit or grapefruit juices can be harmful and is definitely contraindicated. Grapefruit juice does something to the body that causes certain medications to build up, and this could be a serious issue with this medication.

Although you may not be taking cyclosporin internally, it is probably wise for Sjogren's patients to also have their dental visits at least every six months. Cyclosporin can cause dental problems as does the symptoms of Sjogren's itself.

Castor Oil

Castor oil makes up the bulk of the carrier used in Restasis. This means that the cyclosporin chemical was added to the castor oil so it can be put into your eye. The makers of Restasis were thoughtful, because they could have chosen any carrier, but they didn't. They chose castor oil which was shown in a 2002 study published in the journal Ophthalmology to reduce the symptoms of dry eye all by itself.

The negative of castor oil, is that it is not uncommon for patients to have an allergic reaction to it. This can include dermatitis, several forms of allergic conjunctivitis and even asthma. It has been shown in a study to actually cause cytotoxic effects in the conjunctiva. Castor oil is also used as a vehicle to deliver some chemotherapy drugs, but because of the increased risk for allergy, researchers are looking for a better way to carry the potent drugs needed for chemo. With this in mind, it's too bad that Restasis isn't offered with a myriad of different vehicles, giving the patient a choice which works best for him or her.

Alternatives to Restasis

I'm told that the company who makes Restasis accidentally found that the carrier itself worked well enough that they began to market it as Refresh Endura. Patients on this site suggest that, because of the problems so often found with Restasis, it should probably be used as a last resort medication only after trying everything else first. Additionally, if patients using Restasis suspect that it may be the cyclosporin causing their problems, a trial of Refresh Endura might be in order so that you don't have to completely stop treating the symptoms by stopping medication altogether. Another community member added his two cents, stating that he tried a product FreshKote that he felt was far superior to either Restasis or Refresh Endura

Interested in reading more about Sjogren's Syndrome? Try these interesting links:

Neonatal Lupus - babies born with SSA and SSB antibodies
Re-evaluating your mysterious symptoms after Sjogren's diagnosis
Dry Eye Solutions
Salvation in salivation
Do you and your rheumatologist disagree on the severity of your dis...

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Sources: American Osteopathic College of Dermatology , Dry Eye Talk , AllAboutVision.com

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Was it wrong to have my children? Having babies with genetic disease

My kids are basically all grown. This means I had them a l-o-n-g time ago *grin*. Back then, doctors knew about autoimmunity, but hadn't yet identified most of the antibodies, nor ways to test for them. An ANA combined with symptoms back then was the only way to "test" for an autoimmune disease. Those results, combined with your symptoms were important clues, but doctors often got it wrong.

Treatment for these diseases consisted of - well - very little. My doctors' choice was usually steroids. Every time I had an "issue", out came the syringe and prescription pad. Oh yes, they surely did make me feel better, but I worried about what they were doing to my body.

I had a tentative diagnosis of Lupus back then. They didn't call it tentative, but hindsight makes me feel that is what it was when compared to today's diagnosis. I was told virtually nothing about the disease other then "come in when you're sick or hurting, we'll up your steroids".

Right before I chose to get pregnant with my son I was told I probably wouldn't be able to carry a baby to term (other problems). Nobody told me not to try, in fact I was encouraged to go off the meds and try. I was naive and thought I could handle it (miscarriage) okay. I think they were too. To my surprise, I got pregnant in only 2 months. I wanted to keep it a secret, but hubs told the family. Within 2 weeks, I stood up from the couch and miscarried. It happened so fast I didn't really have time to flare.

A week later, I was still bleeding, and got an appointment with an OB/GYN who explained to me that there was nothing he could do. The exam showed I'd dilated, but he worried the miscarriage might be incomplete and I'd need a D&C. I asked for an ultrasound (fairly new back then) and got the first photo of my little boy at 5 1/2 weeks. I had miscarried one of two.

I had beat the odds again.

When he was born, he had a handful of problems, one of which was a horrible rash that appeared within the first few weeks. I was told not to worry about it, that sometimes happens to babies of Lupus moms. I worried I had "given" him Lupus, but was told it would pass. It did.

When we decided to get pregnant with my second child, I went to the doctor to get ready for another attempt. Nobody ever mentioned to me that I shouldn't get pregnant. Their reasoning: I was one of the few who got better when I was pregnant. This was reason to stay pregnant in their minds. Still they kept a close eye on me with weekly visits and ultrasounds, just to be sure. I kept my "baby kick" diary religiously.

Both births were eventful as I experienced threatened pre-term labor with #1 (including bed rest for 2 months) and pre-term labor with #2 that involved a fairly lengthy hospital stay and a lot of medicines. She was born early by a month, but healthy and still quite big. I waited for the rash, but it never came.

After both births, I flared horribly, ending up in the hospital both times. Nobody told me it was a flare, but I recognize the symptoms now years later.

I'm told that, back then women were frequently told not to have children because their diseases frequently would flare, usually very seriously. A very small percentage get better, and lucky for me I fit in that category. I don't know anyone with Lupus who was told that they could pass it genetically, and that might be a reason not to try to get pregnant. Many women simply couldn't get pregnant because of the meds or their symptoms. Not a lot has changed since then.

This brings the question I hardly dare to ask myself - Would I have still chosen to have my children if I knew then what I know now? I'm selfish, because I think I probably, naively, would. I can't imagine my world without my kids, sick or healthy. How do you make a decision like that after the fact?

Both have autoimmunity. I passed on some fairly icky genes. Both are happy to be alive though, and so far they've lived well and have bright futures. I've asked them if I made the right decision. They're both happy with my choice :)

So, where do you stand on the ethics of reproduction when a parent has a known genetic disease? What did you decide? Why?

What did your doctor tell you? Did you agree with your doctor?
Then, the hard question. I guess I don't really expect to get many answers but: Would you change it if you could do it again?

What are members of your communities saying??