I don't know where to start.

I wanted this blog to be open and honest about my personal struggle with my Fathers illness, but I am having a hard time beginning... I think I will try to explain what this disease is, and briefly explain how it has effected my dad. Three of my family members have been diagnosed with Scleroderma, it has effected all of them differently and not too long ago we lost my cousin Shannon to Scleroderma.

Scleroderma is composed of two Greek words "Sclero" which means hard and "derma" which is skin. It tightens the elasticity of the skin tissues and in some cases (like my families) it hardens the organs, systemic scleroderma. When my father was first diagnosed he was told that he had two years before it would take his life. Thankfully and prayerfully this was not the case because he has limited systemic scleroderma, which is slower but still progressive.

When it first started I was a selfish teenager that didn't understand words like "palliative", "chronic care", or "progressive disease"... google wasn't a big deal yet, and if it was I was too busy trying to find a boyfriend. I noticed his skin had blotchy dark patches on his back and his legs were very itchy, but I didn't think anything was wrong. The doctors in Parry Sound had sent him to a hospital in Toronto for a week to run multiple tests to find out what was happening to his body. It was that week when the doctor told my dad very bluntly, and without any family with him that "He has a fast progressing disease and has two years left". My dad was a recovering alcoholic and he had been clean for a year or two but the news was too hard on him and he turned back to his old coping strategy. It didn't last long and he checked himself into the hospital later that night, but I was left feeling broken. That broken feeling hasn't fully went away, I was raised to trust God in all things but knowing that Scleroderma is not curable has left me dealing with waves of anticipatory grief, thinking of what my life would be missing without him.

The first internal body part to harden was his esophagus, he went from being a very heavy man (230lbs) down to 118lbs. Our family adjusted and learned that if he sleeps sitting up his food would go down from gravity and digest properly, so for his birthday we (with the help of friends and family bought him an ultramatic bed for his birthday. He was able to gain weight and fluctuated between 165lbs.

His stomach was next and it would digest his food sometimes but it was a hit or miss. If it didn't digest his food would begin to rot in his stomach and cause him a lot of pain. Sometimes he make himself sick to ease his pain. He was put on Total Parenteral Nutrition (TPN), but would have to drive to Parry Sound and stay for six hours, five days a week until he was approved for Home TPN through some sort of grant. This lasted about five months, and when he was finally approved for the funding him and my mom spent two weeks in Toronto to learn how to do this on their own.

He has been on TPN at home for the last four years, Community Care Access Centre (CCAC) send a nurse from Closing the Gap to check on his PICC line once a week.

In January and February 2017 he went in for two Femoral Popliteal Bypass (FemPop) because he had very poor leg circulation. The original date was scheduled for February but his right leg was in so much pain, and the doctors couldn't feel a pulse. About a month after these surgeries took place his body was able to pump more blood throughout his body causing stress on his heart.

I'm not sure how to write this next section, I think it will just be an overview and I'll post another blog entry later on my reactions to the events later. In March 2017 my dad collapsed and I found him laying on the bedroom floor, he was then taken to the West Parry Sound Health Centre, and told we could keep him at the hospital for palliative care, or send him to Sudbury. So he was transported to Sudbury, where he was told he is a very complicated man (because of his scleroderma) so they could send him back to Parry Sound for palliative care or see if the Heart Institute would take him on as a patient. My dad was airlifted to Sudbury and my mom and I drove to Ottawa and we ended up staying a month with him there. We made a Go Fund Me account and I have uploaded a play-by-play of everything that took place during that time. (To read everything I left out scroll to the very first blog entry in the Scleroderma section to catch up)

2017 was the hardest year for him and it seems 2018 will also be difficult. Since then he has been in and out of the hospital several times, mostly due to stomach issues or breathing problems. He has been seeing a respirologist to see if the scleroderma has moved into his lungs. We just found out that his lungs look ok and are not hardening from his disease, but they are being crushed. The doctor thinks that the muscles around his lungs are hardening and that's what is crushing his lungs.

So, thats where he is at right now. And I am a mix of emotions, and often try to pretend everything is alright. My mom is slowly burning out in the care taker role but she has been doing an amazing job! Both of my parents are truly amazing human beings; their love for God, and each other is so inspiring to me.