Intravenous Drugs and the Battle for the Iron Throne

For the most part, I would have to say that I truly despise blogs that end up being used as a device for sharing feelings, or just ranting with no general focus what-so-ever. I have tried to keep this blog constrained to a few topics; however, I did include a “Personal” tab on this page in the small chance that if I ever wanted to share anything about myself, it would be there. As many of you have noticed, the only content on that particular tab is a thank-you to my close friends and family who are supporting me in this venture.

Wow, that sure was long winded.

I find myself in a vulnerable spot right now as I write this, reflecting on a great many things. One of those things is: What should I write about on my new blog? How ironic, I start to include content on my blog that I despise while deciding on content. Don’t be discouraged dear reader, I don’t plan on having too much of this drivel on a regular basis, but I find myself in a vulnerable spot…

At least I'm warning you.

Around the age of 30 or so, I got diagnosed with an autoimmune disease that manifests itself through arthritic symptoms and gastrointestinal bleeding. Google image search “Ulcerative Colitis,” it cannot be unseen.

It can be safe to say that I spend at least 1/3 of my life in chronic pain, coping with pain or just flat out medicating myself to a certain degree with NSAIDs or steroid therapy. There are many biopharmaceuticals prescribed to treat autoimmune diseases such as this by inhibiting what is called TNF or tumor necrosis factor.

By my best understanding, and without getting tooooooooooo boring, TNF is a group of proteins that cause cell death. In a normal conditions, these are the proteins that help knock out infected cells to allow healthy cells to replace them. Well, for a person who has a disease such as mine, those TNF are killing healthy cells, not infections; therefore, a TNF inhibitor or immune suppressant has to be introduced to stabilize the immune system.

That was a mouthful.

The one I take is called infliximab or commonly called Remicade. I have an IV infusion of Remicade every two months. A good description of it would be an artificial antibody recently reclassified as chemotherapy that effectively lowers the immune system to allow affected areas of inflammation a chance to heal.

I'm not an infusion patient, but I play one on TV.

Just in doing a bit of research on this as I write it, the side-effects include:

More common
Abdominal or stomach pain
• chest pain
• chills
• cough
• dizziness
• fainting
• fever
• flushing of the face
• headache
• hives
• itching
• muscle pain
• nasal congestion
• nausea
• runny nose
• sneezing
• sore throat
• tightness in the chest
• troubled breathing
• unusual tiredness or weakness
• vomiting
Less common
• Back pain
• bloody or cloudy urine
• cracks in the skin at the corners of the mouth
• diarrhea
• difficult or painful urination
• frequent urge to urinate
• pain
• pain or tenderness around the eyes and cheekbones
• skin rash
• soreness or irritation of the mouth or tongue
• soreness or redness around the fingernails or toenails
• vaginal burning or itching and discharge
• white patches in the mouth or on the tongue
• Rare
• Abscess (swollen, red, tender area of infection containing pus)
• back or side pain
• black, tarry stools
• blood in the urine or stools
• bone or joint pain
• constipation
• falls
• feeling of fullness
• general feeling of illness
• hernia (bulge of tissue through the wall of the abdomen)
• irregular or pounding heartbeat
• pain in the rectum
• pain spreading from the abdomen or stomach to the left shoulder
• pinpoint red spots on the skin
• stomach pain (severe)
• swollen or painful glands
• tendon injury
• unusual bleeding or bruising
• weight loss (unusual)
• yellow skin and eyes
Incidence not known
• Area rash
• bloody nose
• burning, tingling, numbness or pain in the hands, arms, feet, or legs
• change in mental status
• clay-colored stools
• continuing vomiting
• convulsions
• dark or bloody urine
• difficulty with speaking
• difficulty with swallowing
• fast heartbeat
• general feeling of tiredness or weakness
• heavier menstrual periods
• hoarseness
• inability to move the arms and legs
• itching, puffiness, or swelling of the eyelids or around the eyes, face, lips, or tongue
• light-colored stools
• loss of appetite
• loss of bladder control
• lower back or side pain
• muscle spasm or jerking of all extremities
• noisy breathing
• painless swelling in the neck, armpits, or groin
• pale skin
• red, scaling, or crusted skin
• redness, soreness, or itching skin
• seizures
• sensation of pins and needles
• severe abdominal or stomach pain
• severe muscle weakness, sudden and progressing
• slow or irregular breathing
• sores, welting, or blisters
• stabbing pain
• sudden loss of consciousness
• sudden numbness and weakness in the arms and legs
• unpleasant breath odor
• upper right abdominal or stomach pain
• vomiting of blood

Me after I read that list.

Mine are always, always, always soreness, aches, headache, sneezing, fever and sore throat.

O hey! Higher chance of tuberculosis and lymphoma with Remicade too! Awesome!                        
(I actually did know that.)

Not to mention, I have zero ability to fight off viruses or infections. It’s always a fun time, especially during cold and flu season. After my infusion this last Sunday, I had company over for my normal Game of Thrones get together, and I am certain that I picked something up from someone.

So, I’m sitting here thinking about my last infusion, and even though I am lucky and blessed in my life, I can’t help but sometimes feel sad. It was a lifestyle change that I was not necessarily ready to make 10 years ago. At the time, it was just misdiagnosis, one after another. Finally, a treatment plan was decided on, and here I am.

This last one was the worst. I had told the nurse that I preferred to not have my IV placed in my wrist, because my veins there tend to move. She, however, had different plans. She must have stuck me three times, and that vein rolled every time.

Insert.
Roll.
Retract.
Pinch.
Repeat.

The bruise on my wrist is a lovely shade, I must tell you. By the time it was placed in my forearm, I just wanted to go home, but all I had was that old familiar burn and waves of nausea. I just wanted to sleep once it finally ended.

I know that the grammar on this has been reprehensible, so I apologize.

In the Apostle Paul’s letters to the early church in Corinth, as well as Galatia, he speaks of a condition that he has to deal with. In 2 Corinthians, Chapter 12, he uses emotive words such as Thorn, Infirmities, Weakness.  In Galatians 4, he wrote (paraphrased) that he was sick with an ailment the first time he visited them. There are many theories out there concerning this. Some same it was a spiritual attack, others agree that it was truly a physical disease that he had to manage while traveling.

Inspiration.

I have always held true to the latter. It has always given me a sense of hope and peace knowing that the man who God called to reach “the ends of the Earth,” had to deal with a condition that may have been like mine. It gives me strength in knowing that God wants to use us all, regardless of our physical conditions or how we view ourselves.

It is those times that I recollect my head and keep moving forward.

Psalm 26:2 – “Examine me, O Lord, and try me; Test my mind and heart.”

There is no point to this, dear reader. I am normally not like this, but I am this time.

I promise that either later this week or next Monday, there will be something more entertaining to read.