Chris Jimenez

I was diagnosed with Diffused Systemic Scleroderma on January 4th, 2005. There are many other conditions associated with this disease that can be deadly. This causes hardening of the skin, internal organs and blood vessels.  My first symptom was swollen hands in the morning for two weeks then daily for two weeks.  This started in November 2004.  Raynauds started that winter and when I saw my Primary care the blood test showed that I had ANA antibodies which meant I had an auto immune disease. They just did not know which one. From December to January I went from swollen hands to swollen feet and skin that was hardening.  I was diagnosed in January 2005. By May 2005 I was complaining of fatigue, I could hardly wash my hair without collapsing. I ended up in the emergency room with hemoglobin of 4.4 and had to have a transfusion. This would be the start of a bleeding stomach (GAVE diagnosed in August 2005) that is still bleeding to this very day. I’ve had 28 scopes with cauterizations to try to keep the bleeding under control. I had at least 20 transfusions but haven’t had one since December 2007. (When you have a chronic illness you tend to be grateful for the things your body doesn’t have to deal with). Not needing a transfusion, waking up and feeling less pain.  Waking up. 

My skin is tight from head to toe and I am stiff like a board. I have difficulty dressing, putting on my socks and shoes. My mouth is so tight I have to cut every thing up and going to the dentist is brutal. I have difficulty swallowing foods (Dysphagia). Due to severe joint pain and muscle pain I now walk with a cane. Getting up and down or being in one position for a period of time is very painful for me. My hands will not close all the way so it is difficult to stand on public transportation and hold on. Holding onto anything is very difficult for me.

My hands and feet turn blue (Raynauds Phenomenom), from cold weather and stress. I am cold all the time and I have to wear gloves constantly.

My eyes are so tight and don't blink all the way so they are constantly dry and irritated. I have to put drops in twice a day and ointment in at night. The dryness is a condition called Sjrogens.

Lung fibrosis made me a candidate for Stem Cell Treatment in August 2008. Tons of pre-testing and clearance were required for this. On February 27th, 2009 I started the Stem Cell process called Mobilization (Chemotherapy). One 24hr dose prior to my Stem Cell Harvest. I ended up in the ER one week later and stayed for 5 days. My heart could not take the Chemo. The Immunologist cancelled me from the Stem Cell study. He said I was a Cardiac Risk. I found I also have fibrosis on my heart. (Very common with Scleroderma).

I was DEVASTATED! This would be the 3rd time I was cancelled from the study but I never gave up hope. 

MY NEXT STEP
I am looking into Johns Hopkins for a second opinion for Stem Cell Treatment. If they don’t accept me then I will decide between two medication trials at Northwestern. I pray that they accept me for Stem Cell Treatment. I have an appointment to be evaluated on June 29th, 2009. These major tests, office visits, emergencies, hospital stays, treatments and travel are very expensive. Insurance pays for some of the costs but not all. My bills just keep piling up. I’m very fortunate to have family and friends who love and support me.  They not only help me physically but they help me financially with fundraisers.

I pray that God will get me through the treatment and through the financial hardship.

I will get through this. I will get stronger and healthier so that I can start my Scleroderma Support group again.

May 11, 2009: BACK TO WORK. I went back to work after my disability February 26th through May 2009. The chemotherapy took a lot out of me and my heart but I am very lucky to be able to work and that I have a job.
Prior to Scleroderma:  I use to be working out everyday during my lunch hour or after work.  Running or riding my bike along the lake was my passion. Going out to dinner and dancing with my boyfriend along with other things boyfriends and girlfriends do was something I looked forward to.
NOW: I can hardly eat. I walk with a cane so dancing is dream of mine. I would give anything to work out again. My life has changed. The girl that was so independent is now dependant on so many. 

So many people still need me!  I Love You.

Losing people to this disease is unnecessary! You can choose to live with this disease or die with it. I am choosing to live with it. I am too young to lose this battle and I don't want my children, family or friends to lose a person who love them very much.

I am grateful for every ones continued loving support. 
Thank you.