Face tight, eyes pulled, mouth narrowed and pulled, rounder wide face, forehead smooth, hands became puffy

I have interstitial lung disease; it is very important that I complete a Pulmonary Function Test (PFT) twice a year.  In the beginning, I had several CT scans to monitor the progression of my disease.  As long as my symptoms are stable, and my PFT results are normal I do not need any chest CT scans for several years.

Vision can be affected by scleroderma.  Regular monitoring is important.  I also have fibrosis in my esophagus, so I have had frequent swallow studies. 

From the beginning I was stiff.  Getting into a bed or car was very hard.  Doctors monitor my range of motion and flexibility 2-4 times a year.

I had to stop UV treatments due to sensativity issues.

• Methylprednislone

• Cyclophosamide (Cytoxan)

• IVIG

• Retuximab

• Benedryl 

• Bactrim (oral)

• Cellcept (oral)

The Child Life Department helped me understand the process of having a port put in her chest, and how it would be used to deliver medication.

They took an X-ray to check the port position.

Having a port for infusions and blood draws was alot easier and less painful than constant needle pokes in my arm.

Art projects, visits from dogs, music therapy and books kept me busy.

Eventually I was able to receive infusions in the outpatient clinic at University of Michigan Mott Hospital.

You can see how swollen the steroid infusions made me, this eventually caused Cushing's Syndrome.  I had to discontinue steroid treatment.