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

In one of my previous posts, I wrote about my son’s recent diagnosis of a bone tumor.  Our local doctor diagnosed it as a benign type called osteochondroma, but referred him to a bone surgeon for surgery.  We made the four hundred mile drive earlier this week.  After some ups and downs in the office as the doctor viewed the reports, we were ultimately told again that the bone tumor is not the malignant type……Praise God!  The surgery will be scheduled after my son’s college basketball season.  Even though it is benign,  the specialist says that it will continue to grow with time and can cause problems as he gets older, so it needs to come out.

I have a tremendous respect for doctors…but oh my.   Our local doctor sent the x-rays, bone scan, MRI, and CT scan on a compact disc in advance.  When we got in the specialist’s examining room, the physician’s assistant started loading them on their computer for the doctor to view.  He couldn’t get the disc containing the CT scan (most important of all the tests) to load.   Based on the x-rays, the specialist told us that it was benign and nothing to worry about….then he looked at the CT written report and nonchalantly says, “well, if the radiologist measured this correctly, then it is a malignant sarcoma tumor, but I won’t know until I can view the CT scan myself”.  Then he just says, “have them send another CD and schedule a follow up in a few weeks.”  Oh my gosh!  We went from benign to possibly malignant in less than five minutes.  I felt the blood drain from my head and I thought I was going to be sick.  I was shocked with the news, but sickened by the thought that we would have to get back in the car and drive back home with our son’s future hanging in the balance while waiting for this shiny round disc to be re-sent and analyzed on this busy doctor’s time frame.

I’m kind of a computer nerd and I had a hard time believing that the hospital would send out a blank or faulty disk.  I’m sure it happens, but I just had a feeling that the films were there.  So, we left the office and walked to our car like three zombies.  My son had his laptop in the car, so we decided to load the CD on the laptop and were able to pull up the CT scan on the screen!  So, we carried the cheap and scuffed HP laptop back up to this world renowned bone specialist’s office and told the physician’s assistant that we had it pulled up on our personal laptop.  He said, “Oh!… come back in and let the doctor take a look”.  So, the doctor comes back in and in about thirty seconds can tell that it is the totally benign tumor that was originally diagnosed.  He tells us not to worry & to schedule an appointment for a surgery consult in late February.

Seriously….if I hadn’t been so relieved and thankful, I might have decided to say something like this:  “Have you ever considered trying to open these CD’s more than ONE time or possibly on one of the OTHER fifty high tech computers you have before you send a family back home 400 miles away after announcing that their 20 year old son might have cancer!!!!” Or, I could have let my hormonal and maternal instincts kick in and simply wrapped the stethoscope around his neck and strangled him.

But, I didn’t…. I just thanked him, thanked my Lord, and left the office with my husband and son feeling very blessed.

I haven’t posted in a while because my life has been a little chaotic in the last weeks.  I’ll post about that later, but for now I’m sitting here with a heart full and overflowing with emotion and gratitude for so many things.   I just watched a tivo’d episode of Dr. Phil.  The show had a segment about a little girl recently diagnosed with a brain tumor.  Her mother has made a blog to help communicate with their family and friends about what is going on on a daily basis with Kate.  I encourage you to read the blog.  This family and how they are handling this diagnosis is inspirational.  My heart hurts for them all.   But, I know that God is with them and will carry them through this journey.

http://www.caringbridge.org/visit/mcraekate/mystory