Ok, let's get this blog started. Let me first tell you gentle readers what to expect to see here. This is primarily for me to use as a journal, to vent as catharsis, and to wrote anything I wish to remember later. I am chronically ill, diagnosed and being treated for autoimmune diseases Rheumatoid Arthritis, Ulcerative Colitis, and Fibromyalgia. I have lots of pain, frustration, depression, joy, peace, and restlessness depending on the day or night.
I started college when I was 42 years old back in 2006 at Holy Family University in Philadelphia, Pennsylvania. I graduated with highest honors( Summa Cum Laude) for a B.A. Degree in Sociology/Psychology in 2012. I had always suffered chronic pain, but It was early 2012 that symptoms manifested and I ignored them the best I could. I really struggled to keep my studies going and complete projects, and give oral presentations my last 6 months in my senior year.
I do not know how long I would have gen on ignoring the cramps, blood in my stool, pain, fatigue etc. the whole reason that I sought medical help was that my wife walked in on me while I was on the toilet and saw the blood I had passed. She was shocked and told me that I was making an appointment to see my family Dr asap. Which I did. I would never ignore another symptom again. Through seeing a Rheumatologist and Gastro Interologist after much blood draws and tests I got diagnosed with autoimmune diseases thatwill be referred to from now on as R.A., U.C. Autoimmune disease is when a person's own immune system mistakenly attacks the person's body, joints, tendons, organs, and it is a body-wide illness.
Symptoms are nasty for R.A. It feels like my joints are being pulled apart, I have extreme fatigue, become mentally confused, and just feel like someone beat me with a crowbar. The U.C. Causes inflammation of my colon, bleeding and passing blood clots during bowel movements, along with increased frequency and urgency, cramps, and pain.
I currently go to Jefferson Hospital in Philadelphia to see Dr. Patricia Kozuch, and get chemo. Yes what autoimmune patients get is medicine administered via IV and it is considered chemo. This is called an infusion, and takes a few hours. I am currently on a very expensive drug that lowers my immune system, this providing normal bowel movements and stopping the damage to my joints and organs by the R.A. This drug does not do anything to prevent pain. The pain I have is from two things, the damage that the R.A. Already did, and any degree of inflammation that occurs presently. Taking the infusions and some heavy narcotics only reduces my pain about 25%. Right now I am on infusions every 8 weeks, but tomorrow I am going to be talking with my Dr about getting on a 6 week schedule because at 5 weeks out I start getting symptoms of an U.C Flare that get continually worse until I get my next infusion.
By the way I mentioned that Remicade infusions are very expensive. My insurance is Medicare because I am disabled. Medicare will only pay 80% of the infusion bill because it is an outpatient procedure. My bill for 20% of just 1 infusion is $2,000, and I currently get one every 8 weeks. So, this one medicine costs me $2,000 a dose, and $12,000 a year. $12,000 a year is actually more than I get in my SS Disability check. Like I said that is one drug among many. How the hell am I supposed to pay $12,000 a year? It is crazy. I have worked out a payment plan with the Hospital for $50 a month. Do the math, this bill will keep growing by $950 a month, and I will never be able to pay it off.
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