The first couple of years were especially devastating to us. Mark was the money earner of the family. I had worked part-time here and there, most recently as an optician, but when our son was born I had opted to stay at home at least for a while. Now though, working was not an option for either of us. Mark was too sick to work and I was needed at home for both my husband and our son.
We applied for help through the state and received Medicare at least to take care of some of the medical bills, and some cash assistance and WIC (since our son was still very young), but it was not enough to pay our bills. Rent was our main concern and we had to turn to our church for help.
The scary thing was that Mark just never seemed to get better. He would do okay but then within a few weeks he would be hospitalized again. I have lost track of how many times Mark relapsed and ended up back in the hospital, but I know it was in the double digits. One major problem we contended with was when Mark started urinating blood. We're not talking a little bit, we're talking about urine that was the color of a glass of Coca Cola! One ER doctor admitted he had never seen so much blood in a urine sample before. The medication, Cytoxan, was affecting Mark. He had to undergo a few cystoscopies (Guys, you don't even want to know what they do during this exam -- think of a rod and the most private area of the front of your body...) to diagnose the problem, but yet it continued to happen. While he was a good doctor and one of the few who had experience treating WG, Dr. Brennan was just not aggressive enough treating Mark's case and did not want to change medications although the Cytoxan was harmful. After two years, we sought new help at University of Michigan. Although only 45 miles away, metro Detroit traffic made it more of a 2 hour drive, which could be harrowing and made even worse when Mark was violently ill. During this time WG attacked his eyes, his kidneys, his central nervous system and of course his lungs and sinuses. He also started experiencing short term memory loss, severe headaches and tooth problems -- most of those caused by the Prednisone.
The doctors there were much more knowledgable. They upped his medication and monitored him closely. Blood tests were -- and still are -- done regularly. New treatments were tried and Mark was even used in some clinical trials (the results of the medicine were not favorable).
The doctors at U of M also encouraged us to file for Social Security Disability. We found a good lawyer -- one who had worked for the Social Security Administration for a while -- and filed. We were promptly denied. Frustrated, we re-filed after the lawyer told us that over 80% of first-time filers are automatically rejected simply because over half would not re-apply.
It was a long two year wait. No income (Mark could not work even if he had wanted to during this process because Social Security would deny him benefits since it was obvious he "could" work -- he almost lost everything because he attempted to go to school one semester -- even though he did not finish the class since he ended up back in the hospital with a relapse.) I sold a lot of our possessions -- including my treasured collection of model horses -- to try to make ends meet. I wrote letter after letter to our Congressman, our State Representative, even the President of the United States, pleading our cause. I was making myself ill in the process. I ended up in the hospital during a pregnancy, while Mark was in another hospital across town. Two years later -- two years of no income later -- we were finally awarded our settlement. We ended up losing about 5 months of benefits -- over $5000 -- because of Mark's school fiasco.
We moved from Detroit's northern suburbs to a town closer to the Ohio border -- and closer to Ann Arbor and the University of Michigan. We bought a 4 bedroom double-wide mobile home in a very nice park -- not realizing that it had been flooded and needed major work. It was later determined that fungus in the walls from the flooding had a detrimental effect on Mark's lungs.