30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Rheumatoid Arthritis and Bipolar Disorder.
2. I was diagnosed with it in the year: 2005.
3. But I had symptoms since: 1999.
4. The biggest adjustment I’ve had to make is: not being able to work.
5. Most people assume: I can do more than I can.
6. The hardest part about mornings are: the side effects of my meds.
7. My favorite medical TV show is: House.
8. A gadget I couldn’t live without is: my laptop computer.
9. The hardest part about nights are: constant pain.
10. Each day I take 27 pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: find the benefits are too slight matter.
12. If I had to choose between an invisible illness or visible I would choose: neither.
13. Regarding working and career: I still manage to write a little (in 10-15 minute sessions).
14. People would be surprised to know: I must fight pain and depression on a constant basis.
15. The hardest thing to accept about my new reality has been: a major loss of mental abilities (concentration and memory).
16. Something I never thought I could do with my illness that I did was: accept that it was permanent.
17. The commercials about my illness: are too understated to impact people who do not have the diseases.
18. Something I really miss doing since I was diagnosed is: memorizing and physical activities.
19. It was really hard to have to give up: long walks, fishing and hunting.
20. A new hobby I have taken up since my diagnosis is: internet networking.
21. If I could have one day of feeling normal again I would: spend it walking in the wilderness.
22. My illness has taught me: self control.
23. Want to know a secret? One thing people say that gets under my skin is: I told you about this already.
24. But I love it when people: respond to my honesty by letting me know about their own struggles.
25. My favorite motto, scripture, quote that gets me through tough times is: "Courage is the capacity to go from failure to failure without losing enthusiasm." --Winston Churchill
26. When someone is diagnosed I’d like to tell them: it's a good thing, because now you know what you're dealing with.
27. Something that has surprised me about living with an illness is: you can still enjoy life.
28. The nicest thing someone did for me when I wasn’t feeling well was: the brethren of my lodge have been driving me to bimonthly specialist appointments (2.5 hours of driving, wait and then return) for the past 3 years.
29. I’m involved with Invisible Illness Week because: healthy people will never understand chronic illness if we who are ill do not speak about our experiences.
30. The fact that you read this list makes me feel: like the effort is not wasted.

Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at www.invisibleillness.com

For more of Clayton Bye's writing, visit his website or become a fan.

My reading and reviews for last week:

Cursed by Jeremy C. Shipp. If you want to experience a different kind of horror fiction, something fresh and interesting, this excellent novel would be a fine choice. I highly recommend it.
http://www.thedeepening.com/horror/2009/08/19/cursed-by-jeremy-c-shipp/


Twins of Darkness by Lisa Lane. I would caution this author to make sure editing of her next book is stringent, but to otherwise keep doing what she’s doing. She has a definite voice and a wonderful imagination. Twins of Darkness stands out from the crowd.
http://reviews.thedeepening.com/2009/08/19/twins-of-darkness-by-lisa-lane/


Her Last by Valerie J. Patterson. Patterson has talent, and Her Last is a respectable writing effort. I hope to see stronger performances from her in the future.
http://tjbook-list.blogspot.com/2009/08/her-last-by-valerie-j-patterson.html


In The Arms Of A Sociopath by S.K. Covey. The writing was not up to professional standards, so I didn't do a review. However, the message is important enough that I recommend you visit her website: http://www.skcovey.com/.


For more of Clayton Bye's writing, visit his website or become a fan.

My latest reviews

Water Witch by Deborah Leblanc: A solid and entertaining horror story.

Dean Koontz's Frankenstein, Dead and Alive: Dead and Alive has its merits. As the conclusion of a trilogy? I say shame on you, Mr. Koontz.

Dax Rigby, War Correspondent by John B. Rosenman: Want to experience what science fiction used to be and why it is sorely missed? Read Dax Rigby, War Correspondent.

The Enemy Stalks by Betty Sullivan La Pierre: Was an enjoyable lunch that somehow left me wanting more than I received.

The Revelations of Minister Skyddz by E. J. Vance: “Revelations” is wicked good!

Guardians of Desire by Sahara Berns: The story is readable in one sitting, it entertains and is a solid piece of debut writing.



For more of Clayton Bye's writing, visit his website or become a fan.

A snapshot of serious, chronic illness

August 3, 2009

I’ve been unavailable for the bulk of my personal blogs for a little over a month. The reason for this absence is a combination of flare ups of my Rheumatoid Arthritis (an autoimmune disease where the blood attacks joints and connective tissue) and my Bipolar Disorder (chemical imbalances in my brain that cause episodes of mania and depression). While the problems are not unbearable, they have reduced my effectiveness and my stamina.

This snapshot is for those of you who haven’t been exposed to these serious illnesses. It’s my belief people like me need to talk about what we deal with on a daily basis as therapy and as a form of education for the general population. Even though there is still stigma attached to mental disease, we, as a family, do not hide my problems...

Overview

I am considered permanently disabled (for many years now) and unable to effectively perform any kind of work. I’ve been trained in behaviour modification techniques, and I am undergoing psychotherapy. Drugs are absolutely required at this time.

Current meds

Rhuematoid Arthritis:
Methotrexate (an immunosuppressant cancer drug developed for leukemia), Sulfasalazine (an anti-inflammatory), Leflunomide (an immunoblocker), Depo-medrol: an emergency injection 3 months ago (An extremely strong cortico-steroid), Celebrex (COX-2 inhibitor nonsteroidal anti-inflammatory drugs (NSAID)) and Tylenol-3 (This combination product contains three medications: acetaminophen, codeine, and caffeine. Acetaminophen belongs to the group of medications called analgesics (pain relievers) and antipyretics (fever reducers). Codeine belongs to the group of medications called narcotic analgesics. Caffeine belongs to a group of medications called stimulants.)

Bipolar Disorder:
Cymbalta (anti-depressant with some pain inhibiting properties: serotonin-norepinephrine reuptake inhibitor), Clonazepam (family of benzodiazepines. It affects chemicals in your brain that may become unbalanced and cause seizures or symptoms of panic disorder.) And Quetiapine (an atypical antipsychotic often used in BPD)

Discussion:

I won’t share all of my symptoms with you. Suffice it to say they are varied and affect every aspect of my life.

What I’ve been experiencing this past month, on a positive level, is an increase in clarity and more short term stamina. I’ve also been able to better interact with and care about people. And my enjoyment of food and activities is returning.

In the months prior to this I regained my ability to read and write, anger virtually disappeared, my depression lessened, and I had only one manic episode.

But recently... my short term memory is slipping again; my long-term physical and mental stamina is deteriorating; body pain, especially knees, hands, shoulders and back, is at a 4 out of 10 with constant flare-ups to about 8; I can’t sit, stand or walk for more than five or ten minutes at a time without extreme pain; my afternoons and evenings include periods of melancholy and tears; and sleep usually ends between 3 and 4 am due to pain.

I’m always concerned about downturns because the repercussions can be severe. For example, in January of this year I was forced to commit myself to a psychiatric hospital. The eventual diagnosis was a bad reaction to a drug that had been recently added to my cocktail. I spent two weeks detoxing before being released and beginning a new drug regime. My mental condition is not considered to be situational (except, maybe, a bit of depression due to my physical losses and when my pain plays into existing emotional disturbances) but, rather, is believed to be caused by a chemical imbalance in my brain.

The two scariest things about my health situation is that both diseases are incurable and may be hereditary... The diseases already exist in other family members. Worse than this, my children will have to learn to watch for symptoms in themselves.

As a family, we work hard to cope with the daily challenges I face in ways which allow us all to create as much joy as possible in our lives. We must also be ever vigilant for signs indicating the onset of dangerous symptoms.

Determination to pursue an enjoyable lifestyle and a robust sense of humour are my most effective tools.


Copyright © Clayton Clifford Bye 2009


For more of Clayton Bye's writing, visit his website or become a fan.