One year and eight months

What can a person do in one year and eight months? 

• You could go from getting your driver's license to leaving for college.
• You could meet someone, fall in love and get married.
• You could have a baby...twice!

Alot can occur in just under two years.


The American College of Rheumatology understands the seriousness of Autoimmune Arthritis diseases and recommends, if possible, a diagnosis and start of treatment 6 months after ONSET in order to best strengthen the chances of future remission.  6 months is a long time to live with pain, fevers and fatigue and no treatment plan.  One year and eight months is an unacceptable time to live with pain, fevers and fatigue and no treatment plan.



My chart used to record symptoms and progression when no one would diagnose me.

 The chart above is the chart I brought into the office of my 2nd rheumatologist.  My first rheumatologist diagnosed me with Undifferentiated Connective Tissue Disease (UCTD) which is when none of your symptoms match a particular disease enough for any one specific diagnosis.  This was in late June of 2008, one year after my symptoms started.  Look at my chart.  By this time I had inflammation in my chest, my left foot/toes, both ankles, both knees, both wrists, both hands/fingers, both elbows and my tailbone.  This was paired with extreme fatigue and fevers (which I recorded on a different chart).  You could actually see the dates a new "spot" started and then look on the fatigue and fever chart and see they were elevated on the same day. 

This rheumatologist refused to treat me with medications, stating that because it's UCTD she needed to "wait until I got worse so she could properly diagnose it according to the disease progression."  I left the office and cried.  I had done enough research by this time to know that DMARDS were the only proven treatment to stop what was happening to me and that any damage was permanent.  She wanted me to get worse and I had no education to tell me this is NOT correct procedure.

Six more months went by and it only spread to 2 more areas- my right foot and my neck. This still wasn't enough for her to put me on treatment.  I ended up at my General Practitioners office at the end of January 2009 with what I thought to be an ear infection.  The left side of my face was swollen and I could hardly open my mouth.  I was sweating profusely from a fever that wouldn't break for 2 weeks.  I was sleeping over 16 hours a day and felt like I had the flu.  After an exam the doctor looked at me and said, "This isn't your ear, this is inflammation of your jaw joint."  The fever, fatigue and nausea wasn't coming from an infection it was coming from inflammation.  He informed me that I should not go back to the original rheumatologist but rather visit one he knew could help me.  I was sent to the new rheumatologist on an emergency visit and was clinically diagnosed with RA and given a prescription of methotrexate before leaving the office.  Within one week my fever broke and I was back to a normal sleep schedule.

A lot can happen in one year and eight months.  In my case, I couldn't possibly think of beginning a relationship or having a child, first I had to get my health under control.  I ended up living with a disease that, due to lack of treatment, has caused me permanent disability in several areas of my body.  One year and eight months has, in essence, affected the rest of my life.  I am not about to sit back and let it do the same for the next generation of patients.

While I do try to keep this personal blog separate from my work with the International Autoimmune Arthritis Movement, I see an opportunity to help others by incorporating a chart such as this into the current development of our Medical Awareness and Educational program (launching in 2013).  IAAM is creating training tools that will be offered in both medical schools and to General Practitioners, who often are the first to see a potential Autoimmune Arthritis patient, so that they can detect these diseases earlier and thus promote early diagnosis.  I think this type of chart is necessary.  In addition to possible early diagnosis, researchers can use the information recorded to study disease progression and maybe even encourage treatments at the stage of UCTD. 

So do YOU have a chart, journal, or otherwise that YOU used to push along your diagnosis?  Would you like to donate that information to IAAM to help us create a standardized chart that could help save lives of those affected in the future? 

One year and eight months is a long time.  But in addition to creating disability in my life it created something else too.  It created time for me to get pissed.  Really pissed.  Had I not had this delay IAAM would not exist so I do believe it served it's purpose.  Now it's time to turn pissed into action.



If you have a chart, journal or other means of record you used to chart your disease progression and would like to contribute that information, please email me at tiffany@IAAMovement.org.