My Scleroderma/Lupus Timeline

Here is my quick attempt at creating a timeline for my Sclero Journey. Of course, for  a more detailed account, review previous blog posts.

  • December 2006-May 2007- Present early symptoms of Raynaud's, fatigue and body swelling.
  • May 2007- Primary care doc diagnoses Lupus
  • September 2007- First appointment with rheumatologist- diagnosed Mixed Connective Tissue Disease
  • November 2007- Official diagnoses of Scleroderma
  • December 2007-July 2008- Symptoms progress rapidly: Heartburn, chronic pain and fatigue, skin thickening, joint pain and muscle aches
  • September 2008- First appointment with Scleroderma specialist (finally some hope!)
  • July 2009- First hospital stay: Severe headache related to high blood pressure in brain
  • October 2009- Fibrosis found in lungs, begin Cellcept
  • September 2011- Taper off all medications to try and get pregnant - fail
  • July 2010- December 2011-  A good year
  • January 2012- Miscarriage - 2 day hospitalization
  • February 2012- Fluid around lungs and pneumonia
  • March-April 2012- Stress rash/eczema (Lupus related? No one knows)
  • April-May 2012- Severe Raynaud's ulcers begin to develop
  • July-August 2013- Shortness of breath/Pericarditis and pericardial effusion/Lupus diagnoses/hypertension- 5 day hospitalization 
  • Sept 2013-Jan 2014- At home recovery (back on lots of pills)
  • March 2013- Hypothyroidism diagnoses 
  • April-June 2013- Finger ulcers come and go/infection and pain
  • July 2013- Pericarditis returns - 2 day hospital stay
  • August 2013-December 2013- Raynaud's is severe, middle finger ulcer refuses to heal, chronic pain
  • January 2014- Flolan Infusion treatment to help with ulcer, 5 day hospital stay 
  • March 2014- Lupus rash erupts all over body (WTF)
  • April 2014- Middle fingertip amputation (infection in bone, can't stitch the wound- still healing)
  • May 2014- Pleurisy (fluid and inflammation) around lungs - Lupus flare
  • June- August 2014- Hyperbaric chamber treatments to heal finger/ unsuccessful 
  • August 2014- right middle fingertip amputation, back on Cellcept (baby making on hold), protein found in urine (no one knows why-possible kidney damage)
  • September- October 2014- Physical and occupational therapy for finger, begin Sildenafil (feel awful- get off)
  • October 2014- Thoracentesis procedure to remove fluid in lungs (no fluid) and get steroid shot for inflammation (doesn't work). Possibility of PAH...(yay)
  • November 2014- PFT, CT scan and more procedures to help figure out what's wrong with lungs, begin Lisinopril for protein in urine, Lupus rash from March is coming back (eek)
  • December-Feb 2015- Continue increasing Lisinproil from 5mg-40mg since protein in urine continues to increase. Pleuritis persists, has moved to right side now instead of left. 
  • December 2014- picked up on side of the road by ambulance thanks to rapid heart beat, leg weakness, dizziness and shortness of breath. They think it's pleuritis related or a side effect of meds. 
  • March-April 2015- Get painful mouth ulcers that make eating impossible. On a liquid diet for several weeks. Also diagnosed with small intestinal bacterial overgrowth. Causes severe bloating and excessive gas that is painful. (I lose 18 lbs in a matter of 6 weeks) 
  • March 2015- Second ambulance ride. Came to house when I couldn't breathe, felt like somone was kicking me in my side, chest hurt and tachycardia. Thought it might be a kidney stone or a blood clot, CT scan found "nothing." Gave me oxygen and vicodin, sent me home. (Never found out what it was)
  • May-June 2015- Deal with several infections (thanks to Cellcept), UTI, Yeast infections. Blood pressure is really high, serious concern over my kidneys since meds don't seem to be working.
  • August 2015- Finger ulcers and infections begin to creep up. Mouth ulcers return, but quickly subside. Kidney biopsy finally done, shows Class 5 and Class 3 Lupus Nephritis- means I'm leaking protein and there is scarring of the kidney membrane tissue (?). Plueritis seems to be improving, as I can finally lie flat again!
  • September 2015- Concerned about my thyroid levels I get an appointment with a new Endocrinologist- apparently levels are fine, so why are my hormones and period all out of whack?! Waiting for insurance to approve Rituxan infusions for Lupus Nephritis. be continued


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