Ok, it has been a year since I posted. I totally forgot about this blog. So how am I doing? I am on entyvio infusions every 4 weeks, and canasa suppositories every night. They ae holding back the bleeding, cramping, and awfulness. I am not 100%, but I will take it. I still have some loose BMs, but nothing like I did before the entyvio. I have an appointment coming up next week with Dr. K at Jefferson, and I am afraid she will want to do a SIG or Colonoscopy on me. Maybe not since I am doing better, but we will see. I know she will want me to ween down the Budesonide, which is never good. I don't do well when weening down a steroid. I lose my appetite, get so nauseous that I throw up, sleep round the clock, and get very bad sucking vacuum of death depression until my system adjusts to life without steroids. I also get6 shakes and fevers, so withdrawal in all its finery.
My spiritual path is Gnosticism. I am so much better when I am on a path that is my own and based on my own experience. I have been reading many books and listening to Aeon Byte Gnostic Radio at Thegodabovegod.com
Wednesday, August 29, 2018
Friday, October 27, 2017
I feel like I am holding on by my fingernails. I feel like I am being vigilant. I feel like if I let ease up for just one second, I will fall into a deep dark pit of despair, and cry for a long time. I can feel dread in my heart. It is like when you have a toothache or when you have bitten your lip. You keep checking the spot to see if it still hurts, and it does. I keep checking and the dread is there looking back at me with demon red eyes. It is locked away, but clawing to get out. Always trying, pacing like a lion in a cage at the zoo. Patiently waiting for a crack to appear. Then it will leap and escape the place where I keep it contained. I can hear it, begging, pleading, demanding, coaxing me to let it out, but I know if it gets out, it will devour me. Submerge me in an ocean of Dark pounding waves. Making me nauseated and dizzy. All the while I can feel it slipping so slowly. It feels like doom.
Sunday, October 8, 2017
Hello, good day, and welcome to my life!
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.
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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