I’ll have to admit that I have not done a lot of in depth research about RA.  I suppose I have just chosen to limit my research to areas that seem important to me for the here and now.  It’s not important for me to know why I have it because it won’t change anything.    I read some of the trials, some of the research being conducted, and some of the information about new drugs.  All of these things are interesting, but what really appeals to me is learning from people that are actually dealing with the diagnosis.  I am also interested in learning about side effects of RA.

For about a year and a half, I have noticed some changes in my periods, my weight distribution, and my skin.  At 47, I know that these changes can be attributed to perimenopause.  After doing some research, I had a saliva test completed which revealed low progesterone.  So, I started a topical bioidentical progesterone cream about six months ago and saw immediate results with my periods….back to normal!  But, instead of sticking to one brand of cream, in a pinch I bought another brand which resulted in no period for almost three months!  So, I went back to the original cream and things went back to normal in just a few weeks.

I just purchased a book to help me prepare for the inevitable…menopause.  The book is called “The Wisdom of Menopause” by Dr. Christiane Northrup.    Dr. Northrup mentions premature menopause and states that women with auto-immune diseases sometimes experience an earlier transition into menopause.  Ahhh….yes, another gift from RA. (This would make a great candidate for my re-gifting closet….)

On a positive note, she also states that the transition period into menopause is quicker.  Normally, this would be good news, but quicker means that your body may not be given enough time to naturally transition without symptoms.  She states that most women in this category will need hormonal support during the perimenopause cycle.  So, there you have it….another reason to hit the books.    Hormones are complicated.  I decide a long time ago that I would not take artificial hormones, and will be taking biodentical hormones instead.    There are several good books on bioidenticals and perimenopause.  Please take the time to read them and do your research before beginning any kind of hormone supplementation.  I have included some good ones in the link on my blog called the “My Favorite Things” store.

If you are about to see a new doctor for the first time, you may be asking yourself the following: Will this appointment be different than the others?  Will he/she understand what you I am going through?  Will I just be sent home with a stack of prescriptions?  Will they find out what’s wrong with me?  Will I be treated with respect?

A visit to a doctor’s office can be intimidating and even frightening.  You may be worried  that your medical issue might be serious or life-threatening.  You may be worried about how you are going to pay for your care, especially if you are diagnosed with something that requires ongoing treatment.    These are all valid questions and concerns that I have heard  from my clients over the years.  To receive the best medical care possible, you need to make the best use of your time, your doctor’s time, as well as your financial resources.

Jacqueline Cogburn, LBSW-IPR

If you are seeing a doctor for the first time…

• Prior to the appointment, use a notebook and write down every question that you can think of that you want to ask the doctor.  Your doctor’s time is valuable and so is yours.  If you do not write down your questions and take them to the visit, I can almost guarantee you that you will leave the office with one or more of your questions unanswered.  And, don’t forget to take the notebook with you to the appointment  (remember that grocery list you left on the counter?).

• Arrive early.  Thirty minutes is a good rule of thumb. You will need to fill out the necessary new patient paperwork. Many offices now have their new patient paperwork online.  If so, it is much easier to fill out the paperwork completely, from the comfort of your own home.  In the office, be sure that you have your health insurance card,  social security number, prior surgery dates and a list of medications with dosage information.  You will be asked to fill out HIPAA (Health Insurance Portability and Accountability Act) forms.  Basically, HIPAA protects your privacy.  If you want your spouse, family member, or friend to be able to discuss  your medical condition or billing information with the office staff and medical professionals, you will need to have that person designated on the form.  If you can’t determine where to put this information, ask the office staff.  They will not share your information without your written permission.

• Be thorough about your medical history. The doctor will visually scan this information before he/she sees you.  It will help the doctor get a quick overall picture of your medical history.  Be sure and list every prescription medication that you are taking, as well as any regular over-the-counter medications, vitamins, and herbs.  Take your medications with you to the appointment in a plastic bag if you would like the doctor’s assistant to record them on the form for you. 

• Dress appropriately for the visit.  If you want to be treated with respect, dress like a professional…a professional  patient. Wear comfortable, sensible clothing.  Make sure your clothes are clean and free of wrinkles.  Shake the doctor’s hand and introduce yourself with confidence and a positive attitude.  I realize that you may not be feeling well, otherwise you wouldn’t be there.  But,  put yourself in your doctor’s shoes for a moment….do you enjoy talking to someone that whines and complains as they tell  their story?  No one likes a whiner…doctors are no exception.

• Try to think of your relationship with the doctor as a professional partnership.  He or she is the medical expert.  But, you are the expert on YOU!

• Consider asking a family member or friend with good listening skills to accompany you to the appointment.  Doctors are not always great communicators.  It helps tremendously to have another set of ears to take in the information.  Take notes if possible.  You might also consider using a tape recorder (just be sure to tell the doctor that you are recording the visit for the purpose of  listening to  the visit again later).  Remember, you are paying for this doctor’s expertise.  You deserve to get what you pay for.

• When your doctor talks to you and asks you questions, answer them completely without a lot of additional information.  For example, if the doctor asks you where you are experiencing pain…he/she wants you to answer by saying something like “I have chronic pain in my elbows, knees, and shoulders”.  What the doctor doesn’t want is “Well, some days I have pain in my shoulders, especially  if I don’t sleep on my favorite pillow that’s kind of flat but really, really soft.  I left it in a hotel once and didn’t think I’d ever find one to replace it!  My knees hurt so bad that I can’t even walk to the mail box…and my elbows…they swell and hurt so bad, especially when the weather changes…you know, I can predict the weather better than the weatherman……” .  (You get the idea)  Occasionally, you will find a doctor that will ask you for extra details, but most of them just want simple answers to their questions.  Doctor’s have a predesignated amount of time allotted for your visit.  Make the most of your time with the doctor by staying focused.

• Don’t assume anything.  Don’t assume that the doctor will know anything about your personal health concerns or complaints that you don’t tell him/her.  Your doctor is not a psychic.

• Don’t be afraid to ask for clarification when the doctor tells you something that you don’t understand.  If the doctor responds by looking over his glasses and down his nose at you,  so what?  Again, you are paying for the physician’s expertise and you deserve to receive an explanation that is understood.  We all have different levels of medical comprehension.  A good doctor understands this and shouldn’t mind explaining his instructions in a different more understandable way.  Ask for pamphlets that explain what he is telling you.

• What you don’t want to do is question every single thing that the doctor tells you.  Or, question the necessity of any test that he/she is requesting.  If the doctor recommends tests, it is because he/she feels that they are necessary to find a diagnosis.  Most doctors are offended by patients that ask for their professional expertise, then question every thing they suggest or refuse to follow their directions.  In the medical profession, this is called patient non-compliance.  They can actually decide to refuse to see you if you are labeled non-compliant.  If you totally disagree with what the doctor is telling you, ordering for you, or prescribing for you…find another doctor.  It is a waste of the their time and yours.

If testing is scheduled

• If the doctor suggests testing, be sure that you find out what is required of you before the test.  You should receive either verbal or written  instructions before any tests that require fasting or advance preparation.  However, don’t assume that if you are not given any instructions that you can just show up.  Make sure that you are prepared for the test.  Again, your time is valuable and the tests are expensive.  Most offices call your insurance company in advance (if you have insurance) to make sure that the test will be covered or if they are a “plan provider”.  But, it is recommended that you call the insurance company directly to double check prior to the testing.  You, after all will be the one responsible for the bill if it is not covered by insurance.

• After the tests are completed, it is fair to ask when you can expect to find out the results.  The person administering the test should be able to tell you a general time frame of when the test results will be sent to your doctor.  If you do not hear back from the doctor in this general time frame, you can call the office if you are concerned.  In some situations, you may not hear back from the doctor if your results are normal.

After the diagnosis

• Do your research.  Ask your doctor for educational materials about your diagnosis.  Do research on the internet with this very important warning.  Research your diagnosis on reputable sites.  Trust me, you and well meaning family and friends can do more harm than good by gathering information from non-trustworthy sites.  Generally, rely on national organizations, foundations,  and hospitals for medical information.  Some of these include:  the American Heart Association, the American Cancer Society, the Mayo Clinic, WebMd, and the Arthritis Foundation.  There are many more websites that provide excellent and up-to-date patient information.  Just use caution.  Many sites are sponsored by pharmaceutical companies to promote their drugs.  Although they may contain good information, the bottom line is that they are promoting their product.  Other sites and blogs may contain information that is not backed by science, while others simply give out bad or even dangerous information.  The internet is an invaluable tool for providing up-to-date information about health conditions and issues.  You just have to be careful that the information you are reading is accurate, informative, and helpful.  Always ask your doctor about any concerns you have after reading something online.  Books published by reputable organizations are also a great investment to help you better understand your diagnosis.

• Consider joining a local support group.  Just being able to talk to other people that actually know what you are dealing with can help tremendously.  If you cannot find a local support group, almost all of the national websites and organizations have online support groups or forums that you can join.  This is an excellent way to connect with others that share your diagnosis.

• Consider asking for a copy of your medical records.  If you want them, you can ask your doctor or the medical records department for a copy.   It is good to keep a file in case you have to suddenly change doctors.  In some cases, it is recommended that you take copies of your records with you when you travel in case of an emergency.  If you have a scanner, scan them and put them on a compact disc.

Just remember…be your own advocate!  Your family, friends, and other loved ones are depending on you to be around for a long time.  Work with your doctor and other health care professionals so that you can achieve the very best medical care and outcome….your good health and happiness are dependant on it! 

Copyright 2009 ~ Jacqueline Cogburn, LBSW-IPR

Well, today was the one day that most women dread the other 364 days of the year…their yearly visit to the gynecologist. I say most, because there are always exceptions. I’ve been around long enough to know that some probably will say something like…”no, I actually enjoy the experience of making sure that my body is healthy”. Whatever. An added bonus at today’s visit was the mammogram. I wasn’t aware that it was scheduled today as a part of this annual event. The good news was that they used a new digital mammography machine. The radiology technician was so excited to share that I was one of the first to get to take advantage of this new technology.  My assessment:  Big deal. It still uses the same principle of flattening your boobs out like pancakes. I actually looked down at my flattened size 34B in between those two sheets of Plexiglas with sadness….poor little thing. Surely, somebody somewhere can come up with a better way to do this. The tech and I discussed why someone hasn’t come up with a scrotum exam using this type of concept…I’ll bet that would accelerate the invention process! In the mean time, we’ll be waiting! I will say, for those that have not had a mammogram yet, it’s really not that bad…just uncomfortable.  It is so worth a little bit of discomfort to know that you are doing everything in your power to protect your breast health.  Do it!

The other good news today was that I didn’t have to do the other exam because I started my period yesterday….great… so it’s now rescheduled for next week. I didn’t cancel because I wanted to talk to my gyno about “perimenopause”. I’m 46 and have started having some weird symptoms……heavy periods, periods close together….missed periods, etc. So, the nurse discussed with the gyno and decided that I should have blood work done to check my hormone levels, then we could have a long talk at my visit next week.

I told the nurse that I had been researching bioidentical hormones with the ulterior motive of finding out the direction that next week’s visit would go. I found out in about ten seconds that my gyno is not a fan of bioidentical hormones. The nurse told me that they have seen many women that have really gotten into trouble by using bioidentical hormones that are compounded at pharmacies. She said that typically what happens is that they are given far too much of the hormone which starts another set of problems for the patient. I then asked if they would be testing my progesterone levels and was told “no”. She said that they only do the FSH and thyroid tests. She said that they do not do the “spit on a swab” tests, as she called it to check progesterone levels. She was referring to “saliva” testing for hormone levels. There are independent labs out the wazoo that are now doing saliva tests through the mail…..gotta make you wonder how reliable this method can be.

Bioidentical hormones have been widely discussed in the past year on Dr. Phil and many others. Suzanne Somers has written a book about biodenticals that has been met with both lofty praise and loads of criticism. Her approach to taking care of her own health is a little unconventional, but hey….it seems to work for her and she seems healthy and happy. Isn’t this the goal for all of us?

I enjoyed this article written in part by Dr. Erika Schwartz and published in the New York Times about hormone replacement therapy.

I suppose we will see after next week’s visit what my blood work reveals and if I am in perimenopause or the beginning stages of menopause. It is also a possibility that my symptoms are due largely due to side effects of my RA medication. Who knows? What I do know is that I will listen to my gynecologist’s opinion about hormone replacement therapy. I will then make a decision based on her knowledge and my research. After all, I’m not a doctor, but I am a thinker.  I’ve also owned my body for quite some time.