Archive for March, 2009
I’m being hard to please. I admit it. I don’t know what I want, but I somehow desire other people to figure it out, when even I can’t.
The truth of the situation is that I have been off of my main medication for rheumatoid arthritis since August 2008. I’ve never been off of this classification of medication since I began it about eight years ago. I had to go off of it due to an infection last fall, and between my high risk for infection and need to have hand surgery I’ve not been able to take it (And I haven’t been able to have surgery due to edema, etc.)
The result is that every day gets worse. Literally. That’s not being pessimistic, it is just my reality right now. My rheumatologist has put me on a medication that people took for RA 60 years ago so I could feel like I was “doing something.” But it’s one of those medications that takes months to kick in, and it’s also raising my danger zone for my liver, so I don’t know how long I can keep taking it. Monthly lab tests will tell.
So I am on about 20 different medications from anti-inflammatories to pain killers, steroids to medications to try to help me sleep, control blood pressure, etc.
If that is the situation, what is my reaction?
Last week was a bad week physically–the worst it had been up until that point. I moaned about it a bit. I’m sick of it!
My Twitters and Facebook postings had people writing me back saying, “Praying for you.” “Hope you feel better soon.” I appreciated it. I explained to my husband one night I didn’t think he realized just how bad each day had been and he listened patiently with sympathy.
But this week he has had to work 15-hour-days every day on a project that is due. We are so blessed that he has a job (and hence, my health insurance) that I can’t and won’t complain for a moment about that. But has it been harder being on my own each day, all day and evening with just me and Josh? Sure. I’ve gotten Josh to bed an hour earlier each night by 8:15 or so and I’ve quickly followed, asleep by 9 p.m.
I haven’t even wanted to post “updates” this week, because I’m even sick of hearing myself whine. But my knees haven’t been able to unbend for days. I walk hunched over and hold onto walls, furniture and cars. I’ve tried to not give into it and still make it a fun week for Josh. We’ve made cookies, played Play Doh, watched a movie, gone to McDonald’s, karate, and hav had 3 play dates. Tonight is the Variety Show at his school and we’re attending. I’ve pushed through and have made it.
So why do I feel a sting when people write kind comments to me that say, “I see you’re posting on the list so you must be feeling all better! I’m so glad!” or “Are you feeling better this week?”
I want to say “No! I am NOT feeling better! I won’t feel better! Every week is going to get worse until I am healed up from a surgery that isn’t even scheduled yet.”
Yes, I am posting to some lists. I am trying to work to keep my mind off of things and then other times I am too exhausted to think straight and I just walk away from the computer. But I feel awful.
I feel badly I’ve not answered people who have kindly asked if I am better? I don’t want to say, “No, and I won’t, thanks, for awhile.” I don’t feel like being cheerful and saying, “I am hanging in there.” I don’t know how to be honest.
When my friend called and asked how I was I said, “Uh… I’m doing okay.” She said, “Just okay?” and I said, “Well, I know I’m sick of saying I’m not doing great and you’re probably sick of hearing it, so I don’t know… Lately I’ve been stealing my friend Pam Farrell’s saying… ‘I’m choosing joy!’”
Something as simple as “how are you?” shouldn’t caused such mixed emotions, right? After 15 years of chronic illness, I should be past it causing any emotions at all. But even as I write emails to people who I know are chronically ill I hesitate as to what to say. Do I say, “I hope you are feeling better”? Or do I say, “Unless you let me know otherwise, I’ll assume you are still having a lot of pain”?
We have a 50% chance of getting it right. When we are right, the person in pain gets a moment of “ahhh” –like getting into a hot tub. The sting of pain is taken away for just a few minutes. When we get it wrong, it’s a sting that is more like wading into the cold ocean waters.
What are your feelings? Experiences? While I am waiting I guess I will go update my Twitter. I’m still deciding to be honest (and boring) or “joyful” and upbeat.Read Full Post | Make a Comment ( 27 so far )
Tuesday, March 17th Oprah’s show will feature an interview with Montel Williams about living with chronic illness and they will be joined by the well-known physician Dr. Oz. This is not an endorsement of any kind for Oprah or her television show, but I am eager to see what this episode reveals regarding living with illness, and am glad to see an illness that is invisible being represented too. The preview also shows it will feature Scott Hamilton and Fran Drescher.
You can comment on the program now, or after it shows at her forum at Oprah.com (you must first register). If you feel comfortable doing so I encourage you to express what it’s like to live with a chronic illness. It’s no secret I would love for her to be aware of National Invisible Chronic Illness Awareness Week, and for her to see that nearly 1 in 2 live with illness—quietly–not just the celebrities that are willing to speak out.
Here is what I submitted to the forum. It is waiting approval (and I’m not sure it will make it through or not.)
Everyone copes with a chronic illness in the best way he or she knows how at the time. I have lived with rheumatoid arthritis since the age of 24 (16 years now) and like many people who are posting here, I just take one day at a time. Right now I have been in a new “season” of my disease, off Humera since Aug 2008 because I ended up with the flesh-eating bacteria in a wound. Extra prednisone and other meds are keeping me going–but just barely.
As founder of National Invisible Chronic Illness Awareness Week, I am eager to see what this show entails. As a long-time viewer of Oprah through the years, I applaud her efforts to finally talk about the emotional impact of invisible illnesses. (MS can be invisible for years and then can become “more visible” as the disease progresses, liike my RA and many other illnesses.)
Many of us may be frustrated if Montel shares experiences that are different than are own. I see posts that express that Montel is a bit whiny about his experience of “fighting for his life” while living with this disease.
But a couple points: One, he isn’t alone in his experience and will be encouraging many people who feel alone and isolated in their feelings of suicide. According to various studies, depression is 15-20% higher for the chronically ill than for the average person and physical illness or uncontrollable physical pain are major factors in up to 70% of suicides—over 50 % of the people being under 35.
Secondly, I think the honesty and vulnerability he expresses (as seen in the brief preview clip) are vital so that more people can be aware of “the face” of invisible illness. Let’s face it: when people like Montel Williams or Michael J. Fox (who is on the cover of Good Housekeeping this month) speak out, it gives illness a face — and a young one at that! Something those of us under 60 should appreciate.
It’s a nice reminder to healthy people that there are many of us who “look fine” but who are not, and who can legally park in the handicapped parking spot when necessary (even when we emotionally don’t want to!) Over 133 million people live with chronic illness, about 1 in 2 in the USA and about 96% of these diseases are invisible.
I have always liked Dr. Oz and am glad that we can hear from him on the topic of illness, perhaps even some of the emotions behind it. Rather than just sensationalize Montel’s experience, I think it’s vital that the audience hear from a well-respected physician on what you can do after the diagnosis when the illness begins to affect all areas of your life, as well as that of your family.
Thank you for taking the time to let people know about Invisible Illness Week. This year it will be September 14-20, 2009 and we are planning for it right now! We are eager to see how we can spread the word even more effectively this year and you make a huge difference!Read Full Post | Make a Comment ( 3 so far )
Please pass this announcement on to anyone who would be interested!
Christians with Illness Blog Carnival Seeking Submissions
MARCH 2009– Surprise! That is the theme for the first Christians with Chronic Illness Blog Carnival starting in April 2009. The carnival, hosted by Rest Ministries, the largest Christian organization in the USA, hopes to reach the thousands of people who live with chronic illness or pain, and who also rely on their faith to get them through the difficult moments.
Rest Ministries, Inc. began in 1997 when founder Lisa Copen, then 29, was unable to find Christian support for her illness, rheumatoid arthritis. Her ministry now reaches over 80,000 visitors per month through daily devotionals, a social network, HopeKeepers Magazine, and HopeKeepers groups in churches around the USA and beyond.
Copen explains, “There are some amazingly gifted writers on the internet who share about the ups and downs of living with chronic or invisible illness and also their faith. As the number of bloggers increases exponentially each month, we want to provide a place where those who are blogging about their faith and their illness can share their message with more people.”
Submit your blog posting at www.christianswithillnessblogcarnivalsubmit.com by April 5, 2009. The carnival will be posted the 15th of each month. Upcoming theme include coping with loss and creative ideas for keeping kids busy during summer months when you have limited energy.
This is a great opportunity for Christian authors who have an illness and blog to share their posts too. Rest Ministries encourages anyone to submit. Preference will be given to those who submit blog posts on the theme, and to those with an illness or who is a caregiver.
“Oftentimes we are most encouraged by others who have walked a similar path,” says Copen. “We want to discover how they are still able to celebrate their lives and find a purpose in their pain.”
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