My journey with RA began in March 2007.  I feel very fortunate because I was able to get in with a rheumatologist and had my symptoms under control by October of that same year.  My rheumatoid arthritis is seronegative, which means that I do not test positive to the traditional diagnostic tests that are used to diagnose the disease.  Seronegative makes the job of diagnosing a patient with rheumatoid arthritis even more difficult.  After conducting numerous tests to rule out other explanations for my joint tenderness and swelling, my rheumatologist decided to prescribe methotrexate.  She started me on six 2.5 mg tablets to be taken one day each week.  In addition, she prescribed 1 mg. of folic acid to be taken daily.  

I began keeping a journal in April 2007 to help me keep up with my symptoms, appointments, and the various medications that I was prescribed.  As I prepared for this article, it was interesting to look back at my journal entries during that time of uncertainty.   I definitely had good days and bad days with life interspersed between the two.  I documented the day that I started on methotrexate.  I easily determined that my symptoms began to lessen in four weeks and were almost totally under control in eight.  I remember worrying about hair loss and the other side effects from methotrexate.  However, thanks to the folic acid I have not experienced any of the side effects other than mild fatigue the day after I take the methotrexate.   I visit my rheumatologist’s office every three months for bloodwork and every six months for a follow up.   I have found that my “maintenance” dose of methotrexate is five 2.5 mg tablets per week. 

I have read posts on various sites about people newly diagnosed that are fearful of taking methotrexate because of its side effects and the fact that it is chemotherapy.  I had the same fears in the beginning, but for me…it’s been a miracle drug that has given me my life back.  I hope that this is encouraging to those of you that are newly diagnosed.  

Here is an excellent video that explains the proper use of methtrexate for the treatment of Rheumatoid Arthritis:

 http://www.rheuminfo.com/content/view/113/385/

December 8: 6:00 PM. It started to snow. The first snow of the season!  The wife and I took our coffee cups and sat for hours by the window watching the huge soft flakes drift down from heaven. It looked like something from a Norman Rockwell painting. So romantic we felt like newlyweds again. I love the snow!

December 9: We woke to a beautiful blanket of pristine, crystal white snow covering every inch of the landscape. What a beautiful sight! Can there be a more lovely place in the whole world? Moving here was the best idea I’ve ever had! Shoveled snow for the first time in years and felt like a boy again. I did both our driveway and the sidewalks. This afternoon the snowplow came along and covered up the sidewalks and closed in the driveway, so I got to shovel again. What a perfect life!

December 12: The sun has melted all our lovely snow. Such a disappointment. My neighbor tells me not to worry, we’ll definitely have a white Christmas. No snow on Christmas would be awful! Bob says we’ll have so much snow by the end of winter, that I’ll never want to see snow again. l don’t think that’s possible. Bob is such a nice man I’m glad he’s our neighbor.

December 14: Snow lovely snow! 8″ last night. The temperature dropped to -20. The cold makes everything sparkle like shimmering diamonds. The wind took my breath away, but I warmed up by shoveling the driveway and sidewalks. This is the life! The snowplow came back this afternoon and buried everything again. l didn’t realize I would have to do quite this much shoveling, but I’ll certainly get back in shape this way. I wish l wouldn’t huff and puff so.

December 15: 20 inches forecast. Sold my van and bought a 4×4 Blazer. Bought snow tires for the wife’s car and two extra snow shovels. Stocked the freezer. The wife wants a wood stove in case the electricity goes out. I think that’s silly. We aren’t in Alaska, after all.

December 16: Ice storm this morning. Fell on my butt on the ice in the driveway putting down salt. Hurt like hell. The wife laughed for an hour, which I think was very cruel.

December 17: Still way below freezing. Roads are too icy to go anywhere. Electricity was off for 5 hours. I had to pile the blankets on to stay warm. Nothing to do but stare at the wife and try not to irritate her. Guess I should’ve bought a wood stove, but won’t admit it to her. God, I hate it when she’s right. I can’t believe I’m freezing to death in my own living room.

December 20: Electricity’s back on, but had another 14″ of damn snow last night. More shoveling. Took all day. Idiotic snowplow came by twice. Tried to find a neighbor kid to shovel, but they said they’re too busy playing hockey. I think they’re lying. Called the only hardware store around to see about buying a snow blower and they’re out. Might have another shipment in March. I think they’re lying. Bob says I have to shovel or the city will have it done and bill me. I think he’s lying.

December 22: Bob was right about a white Christmas because 13 more inches of the white crap fell today, and it’s so cold it probably won’t melt till August. Took me 45 minutes to get all dressed up to go out to shovel and then I had to pee. By the time I got undressed, peed and dressed again. I was too tired to shovel. Tried to hire Bob who has a plow on his truck for the rest of the winter; but he says he’s too busy. I think the ass is lying.

December 23: Only 2″ of snow today. And it warmed up to 0. The wife wanted me to decorate the front of the house this morning. What is she nuts!!! Why didn’t she tell me to do that a month ago? She says she did but I think she’s lying.

December 24: 6″. Snow packed so hard by snowplow, l broke the shovel. Thought I was having a heart attack. If I ever catch the idiot who drives that snowplow, I’ll drag him through the snow by his balls. I know he hides around the corner and waits for me to finish shoveling and then he comes down the street at a 100 miles an hour and throws snow all over where I’ve just been! Tonight the wife wanted me to sing Christmas carols with her and open our presents, but I was busy watching for that flipping snowplow.

December 25: Merry Christmas. 20 more inches of the #!#%!# white stuff tonight. Snowed in. The idea of shoveling makes my blood boil. God I hate the snow! Then the snowplow driver came by asking for a donation and I hit him over the head with my shovel. The wife says I have a bad attitude. I think she’s an idiot. If I have to watch “It’s a Wonderful Life” one more time, I’m going to kill her.

December 26: Still snowed in. Why the hell did I ever move here? It was all HER idea. She’s really getting on my nerves.

December 27: Temperature dropped to -30 and the pipes froze.

December 28: Warmed up to above -50. Still snowed in. The woman is driving me crazy!!!!!

December 29: 10 more inches. Bob says I have to shovel the roof or it could cave in. That’s the silliest thing I ever heard. How dumb does he think I am? Idiot.

December 30: Roof caved in. The snow plow driver is suing me for a million dollars. The wife went home to her mother. 9″ predicted.

December 31: Set fire to what’s left of the house. No more shoveling.

January 8: I feel so good. I just love those little white pills they keep giving me. Why am I tied to the bed?

-Author Unknown

Before Christmas, my family and I embarked on a really quick ski trip.  Skiing has always been one of my favorite outdoor winter activities.  I’ve never considered myself an athlete (my family would whole-heartedly agree), but I can ski.  Now, to be totally honest when I say ski, my definition is to meander down the mountain at a comfortable rate that includes occasionally passing other skiiers.  I’ve never ski jumped, on purpose anyway, or raced anyone and won, but I’m a decent skiier and don’t embarass my kids…with my skiing anyway.

When I was diagnosed with RA in 2007 one of my first questions was, “Will I still be able to ski”?  The answer from my rheumatologist was “Yes, of course…as soon as we get it under control”.  Until we got it under control, I thought that her response was laughable.  There would be no way that I could  unless I improved significantly. 

Well, not only did I improve significantly, I did ski this past December.  Yes, I did.   As I got off the lift and made my way down the mountain for the first run, a tear of thankfulness rolled down my cheek….So thankful that RA has not taken my love for skiing away!  That day was magical.  Beautiful fresh powder and huge snowflakes fell from the sky and created a beautiful day for skiing with my family, and reflecting on where I’ve been and where I’m going. 

I just saw the following quote from Lance Armstrong:  “I take nothing for granted.  I have only good days and great days”.   I am going to try to remember this for 2010….good or great,  I will not take either for granted.

Me in the center...I laughed when I saw this picture because it looks like I could be Muslim...I'm not.

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

Attitude

There once was a woman who woke up one morning,

Looked in the mirror,

And noticed she had only three hairs on her head.

‘Well,’ she said, ‘I think I’ll braid my hair today.’

So she did and she had a wonderful day.

The next day she woke up,

Looked in the mirror

And saw that she had only two hairs on her head.

‘Hmmm,’ she said,

‘I think I’ll part my hair down the middle today.’

So she did and she had a grand day.

The next day she woke up,

Looked in the mirror and noticed

That she had only one hair on her head.

‘Well,’ she said, ‘today I’m going

To wear my hair in a pony tail.’

So she did, and she had a fun, fun day.

The next day she woke up,

Looked in the mirror and noticed

That there wasn’t a single hair on her head.

‘YAY!’ she exclaimed.

‘I don’t have to fix my hair today!’

Attitude is everything.

______________________________

Be kinder than necessary,

For everyone you meet is fighting some kind of battle.

Live simply,

Love generously,

Care deeply,

Speak kindly…….

Life isn’t about waiting for the storm to pass…

It’s about learning to dance in the rain.

-Unknown

For those of you that have read all of my posts…(I’m sure that is a small number ) you will know that I have RA, my husband has CAD (Coronary artery disease) and my daughter had ITP (idiopathic thrombocytopenia purpura) earlier this year. Until today, my son was the only one of us without a label. Today, he got a label.  He was diagnosed with an osteochondroma (benign bone tumor). For almost a week, I have been praying, worrying, denying, crying, stressing, and researching. The doctors originally thought that it was benign, but changed their mind and thought that it could be malignant. After a MRI, bone scan, x-rays, and CT scan, they decided that it was the lesser of two evils and gave me the call with the good news that I was waiting for. Thank you Lord!

My children are my greatest blessings.  I would easily trade places with them when they are sick or hurting.  As I was giving the hospital business office my insurance card, and then my unreimbursed medical expense card to cover the deductible, I looked over at my husband and told him that I may have to re-think my thoughts about universal healthcare.  I cannot imagine what it would be like to not have insurance that would pay for appropriate medical testing  for your child or your spouse.   There has to be a way to provide affordable healthcare for everyone.  I don’t think it needs to be “free”, but affordable.  I hope that very soon…somebody, somewhere can figure out how to do it.

So, for today I am counting my blessings.  I’m one of the fortunate ones that has insurance and a job that enables me to help provide for my family.  I’m thankful for a husband that loves me and our children.  I’m blessed that I don’t work for an employer that might fire me for missing a staff meeting because I was on the phone with the doctor.  I’m thankful that on most days, I walk without a limp, can still wear high heels occasionally, and that my medication is doing its job and keeps my RA under control.   And…..I’ve lost three pounds on the Rapid Weight Loss Worried About Your Kids Diet.  There are so many things to be thankful for.  What are you thankful for today?

I read this a few years ago.  It is so true and good to remember.

-J

Lord you know better than I know myself that I am growing older and will some day be old.

Keep me from the fatal habit of thinking that I must say something on every subject and on every occasion. Release me from craving to straighten out every body’s affairs.

Make me thoughtful but not moody, helpful but not bossy. With my vast store of wisdom, it seems a pity not to use it all, but You know Lord that I want a few friends at the end.

Keep my mind free from the recital of endless details, give me wings to get to the point. Seal my lips on my aches and pains. They are increasing and love of rehearsing them is becoming sweeter as the years go by. I dare not ask for grace enough to enjoy the tales of others’ pain, but help me to endure them with patience.

I dare not ask for improved memory, but for a growing humility and a lessening cocksureness when my memory seems to clash with the memories of others. Teach me the glorious lesson that occasionally I may be mistaken.

Keep me reasonably sweet. I do not want to be a saint, some of them are so hard to live with, but a sour old person is one of the crowning works of the devil. Give me the ability to see good in unexpected places, talents in unexpected people, and give me, O Lord, the grace to tell them so.
Amen