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/

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.

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 attended a retreat for women at my church this weekend. It was a great opportunity to get away from my normal routine and meet other women in the community. The main focus of the weekend was building friendships with other women. The food, fellowship, music, and worship was outstanding and I enjoyed it so much. However, for those of us with RA I ask…do we really have to stand up to sing praise? Now, I already know the answer to this question, but I still have to ask. You know how it is…you get that feeling that your joint/s are starting to swell…you start shifting…you try standing on one leg. After standing on one leg for a while and trying to balance and bumping into the person next to you, your hip begins to hurt, so you try to put some weight back on your foot and feel that familiar sting and wish you had your gel pack.  It’s hard to concentrate on worship when you are constantly trying to shift your weight to a position that doesn’t hurt.

Because I try to be an optimist, I have found a bright spot in modern worship services…at least we don’t have to worry about holding the hymnal now that the words are on the big screens! I wonder if they were thinking about those of us with RA when this concept was started? Hmmmm….nope, probably not. But, nonetheless it’s helpful, so yeah for words on the screen! (It’s also great for those of us that just had to start wearing glasses…but that’s another story for another day.)

I looked around and noticed that there were a few people sitting down but, if I sat down what would people think?   (I look forward to the day when I’ll not care what people think)  But until that day, I’ll just  shift and wiggle and balance to get through it until the much anticipated words are spoken…”you may be seated”.  Can I hear an amen?  Amen.

Rheumatoid…makes me think of hemorrhoid.   The similarity between the two is that they both involve pain and both could easily fit in the “pain in the a**” category.

Then, there’s the word arthritis.  Arthritis…the kind your grandmother had is not the same as rheumatoid arthritis.  I think we’ve all probably experienced a conversation that went something like this…”Oh, you have arthritis?”  Followed by, “you know… Aleve really works for my Aunt Gracie”.  Let me tell you something that I know for sure…when you are having an RA flare, Aleve is no more effective than eating a sweet tart. Rheumatoid Arthritis is an autoimmune disease in which the body’s defense system attacks itself and causes the joint lining to become inflamed and swell.  I know that there is pain involved with any of the over one hundred types of arthritis, but I’m just sayin’…RA provides a different kind of pain.

There are so many misconceptions & myths about rheumatoid arthritis.  I think a name change is in order.  Any ideas?

Within a few months, I was referred to a rheumatologist…an excellent one. Over the course of a couple of months of testing with negative results, she told me that I have seronegative rheumatoid arthritis.  She said that approximately 20% of all patients she sees test negative for rheumatoid arthritis, but actually have the symptoms.  It has always been expected, so it wasn’t too much of a surprise. I had already done the research, so I was prepared. RA isn’t something that I would wish on anyone, but in the big scheme of things….it’s manageable. At the time, I had already lost a friend to cancer, so I didn’t take the time to participate in a pity party. I have a life and a happy family to be a part of…upward and onward!

My rheumatologist prescribed another round of prednisone and started me on methotrexate and folic acid . The folic acid helps to prevent hair loss and mouth ulcers, side effects of the methotrexate. Within three weeks, my stiffness and swelling went away. In the three years since diagnosis, I have only had two major flares! Many people have a poor response to methotrexate so I feel very blessed. My only bad reaction to all of the medications that were prescribed earlier was to Mobix. My face blew up like a blowfish. But, even this gave an opportunity for my family to laugh at me…we like to laugh.

My morning started out in this rheumatologist’s office for a checkup. It is always nice to go in and report that I am doing well. I don’t think she hears that from many of her patients. We decided that I could try reducing my methotrexate in the off chance that I am in remission. Here’s hoping. (Whatever happens….I’m still wearing my Tevas)

Welcome to my first posting. I’m not exactly sure what I’m doing, so prepare to be amused as I fumble through the world of blogging.

My idea for this came from boredom. I have some extra time on my hands now that I’m an empty nester, so I decided that I would try my hand at writing something. Hmmm….what could I write about? I think of myself as having a very normal life, an awesome husband, two great kids, and an adorable little dog…..not terribly exciting topics to anyone but me.

What my husband and I don’t have…is perfect health. My husband had a heart attack at 43 followed by double by-pass surgery. I was diagnosed with rheumatoid arthritis at 44. So, our forties have not been, well …”fabulous”.  But, the great part is that both of us are still here!  It is my goal for it to stay that way.  We want to grow old together and enjoy our life along the way.    For me, having RA is just a speed bump, not a road block.  I will not always blog just about RA…because my life is so much more than that.  So, come along with me as I’m living life with RA.