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.

Autoimmune Arthritis got my toe

As I got out of bed this morning, I gently swung my legs around and down to the floor, stood up, and bellowed a loud, "OWWWWW!" (and a few words not appropriate for this posting)  My toe feels sprained, I can't put any pressure on it at all.  So I begin to ask myself, "What did I do yesterday at the gym?  Did I lose my balance? Or maybe in the pool, did I stub my toe?"  I quickly looked down to investigate what must be major bruising, maybe even a cut?  "Ugh, I sprained my toe," I thought. To my surprise, here's what I saw: 

Yep.  A perfectly fine looking toe.  It wasn't an injury or sprain at all.  No bruise, no injury, nothing to the naked eye was wrong with my toe.  It was, in fact, another flare.  Autoimmune Arthritis got my toe. 

I felt the need to post this for a couple of reasons. 

1. I've lived with an Autoimmune Arthritis disease now for 6 years and I know what it feels like to have a flare, whether full blown that is paired with fatigue, fevers and flu-like symptoms, or more confined flare, such as waking to a "mystery injury".  If even I GET fooled, imagine how hard it is for those who do not have Autoimmune Arthritis to comprehend this.  I mean, look at my toe, it "looks" fine!  So, lesson number one: Having Autoimmune Arthritis can be invisible on the outside because the 'pain of the sprain' is in fact the result of cells failing to communicate with the body, thus causing an immune response. 

2. Imagine how hard this is for a doctor to understand? Having an "unexplained injury" is one of the first signs of having an Autoimmune Arthritis disease.  However, most often a person will go to a family doctor to treat their "injury" and are left with a splint and told to ice it and rest.  Shouldn't it be a red flag to doctors that if an instance to cause an injury never occurred that perhaps it's something other than a sprain?  Lesson number two: If you or someone you know has an unexplained injury, with no visible signs other than possibly swelling, consider the cause may be internal.  Also, if this occurs be proactive with your care.  Take your temperature.  These 'flares' are often paired with fever given your body is trying to attack what it believe to be unhealthy cells.  In addition note how tired you feel (if at all).  When flaring one of the most common symptoms is fatigue.  If there is a low grade fever (at any time during this episode) and/or you feel unusually fatigued, tell your doctor to consider this is associated with the mystery injury.

I am lucky.  Those in my life try to understand my disease and do not need visual proof that something is wrong.  But I'm not in the majority.  Unfortunately there are many patients who do not have the support of family and friends because if they can't see it they don't believe it.  The reality is, however, that with Autoimmune Arthritis diseases if you "see it" then it's because it's advanced.  In time, if not treated properly, body parts can begin to shift from the inflammation as well as attack organs. 



I have Autoimmune Arthritis affect so many parts of my body, from countless joints to connective tissues (often in my chest, it feels like I'm having a heart attack but it's the connective tissues flaring between my ribs) to soft tissues (particularly my tongue), but my skin, teeth and eyes are affected as well.  Yet, even though these affected areas all started with that mystery injury, I still somehow always first default to "what did I do to injure myself?"  But the fact of the matter is it 'feels' like a sprain but it's not a sprain.  I have a small fever today and had a tough time waking up.  So while that toe may not look serious, and it's in the early stages of disease activity, it is serious...because it means the disease is spreading.  Autoimmune Arthritis got a lot of my body already and now it got my toe. 

I'm hoping some of you can use this blog entry to show others what it looks like and feels like in the very early stages and where it goes if the cells and immune system cannot be controlled.  Just because it's not always visible doesn't mean it's not serious.  We all start out invisible.