Staying grounded while recovering from Lyme disease
If you’re like me, you want to know the latest scoop on what scientists are learning about Lyme disease. In this May 2013 interview we hear again from pathologist Alan MacDonald. (This interview is part 2 of a 3-part series, see the first one here). I’ve noted some key points you can jump to if you don’t have time to view the entire interview.
Credit: ashroc’s flickr stream
Coping with persistent Lyme—or any serious illness that goes on for a long time—often becomes a part-time or even full-time job.
With so many medical appointments and medications to keep track of, not to mention feeling rotten, you might be letting some important things slide.
Here’s a reminder of items to put on your calendar:
And don’t forget your annual physical. Your Lyme literate doctor is covering a lot of bases, and may well catch something amiss that’s not related to tick-borne infections.
Nonetheless, it’s important to maintain appointments with your primary care physician, who goes through an exam with a fresh eye and check basics like cholesterol. Put your general practitioner and Lyme doctor in touch to ensure that your care is complete.
Buttercups.
Credit: LifeLoveLyme
One of the many reasons I love getting away to the house I visit in a small community in Maryland on the Chesapeake Bay: Buttercups.
Back in my suburban neighborhood, herbicides have wiped out “weeds” in every perfectly manicured yard. But a few weeks ago at my get-away, I saw the cheery flowers in the photo above growing in the yard across the street with wild abandon. No weed killer there.
Granddaughter, grandmother: generations of life and love.
Photo: LifeLoveLyme
On days like today when I’m feeling too sick to write—well, that’s when I most need encouragement from the words of others. Here are some quotes that really speak to me; be sure to click on the links to read a little about these inspiring women and men.
1. Where there is love, there is life. Mahatma Gandhi
2. Only when we are no longer afraid do we begin to live. Dorothy Thomson
Can you eat all this lush veggie wonderfulness in one sitting?
Photo by LifeLoveLyme
Carrots, celery, brocoli, a hearty portion of kale, parsley, an apple and a big red beet: so much nutrition! A couple of day’s worth of vibrant vitamins, right?
Photo: LifeLoveLyme
Recently, I logged on and saw a posting on my Yahoo lyme support group from Rebecca of Hampton, Virginia. She had written a list that touched us all, and I’d like to share her thoughts with you.
I am learning…
To chill out.
To love myself not just on good days, but bad days, too.
To reach out to others.
To let go of my need to control.
That friends are treasures.
That hugs, kisses, and a little together time in a family go a long way.
***
That it’s OK to not be OK sometimes.
That I’m never alone.
That every moment of every day is a gift.
That none of us deserve this and we matter in a very special way.
That this disease is ugly—but I’m not.
Did you hear whoops of excitement from Virginia this week?
A history-making bill (SB971) that would require doctors to inform patients of the inaccuracy of Lyme testing is under consideration right now in my great state. I would have traveled to Richmond to support the bill in person, if I weren’t so ill with lyme myself.
Above is a video from YouTube of the January 29 debate in the state Senate earlier this week. If you are aren’t a hearing junkie, scan for the opposition’s argument, and fast-forward to these sections for compelling highlights:
[15:15] Senator Richard H. Black, who introduced this bill. When asked if consideration has been made as to how the bill could intrude on patient/physician relationships (many doctors oppose the bill), Senator Black replies respectfully, “I have tremendous faith in our physicians and I believe in their ability to do their jobs. I feel like in this particular area [Lyme disease] that this is a measure that would be of assistance and I think that it is something we owe to the people in the vast areas of Virginia that are afflicted by this.”
The Senator then cites incidence charts [21:15] and says that while his district is ground zero for Lyme in Virginia, other areas also have a very high incidence.
It was definitely a bummer seeing all the things crossed out on my kitchen calendar.
I heard an excellent idea from a former Lyme patient who now makes her living helping others manage all the ins-and-outs of this disease. She suggests ditching pens for pencils when it comes to writing down calendar entries.
Because back when she was ill, she started noting social events and appointments in pencil. That way, she says, if she had to cancel something, she could erase it and move on. She didn’t have the stress of seeing her calendar filled with all the thing she crossed off because of Lyme.
That’s an idea we can all use as we move into 2013. In the past few days alone, I have had to miss the funeral of a friend’s mother, pass on my wonderful brother-in-law’s major birthday celebration four hours away in New Jersey, and cancel a reunion lunch with a dear family friend.
At least when I look at my kitchen calendar now, I’m not reminded of all that, and can look to the next week with a fresh outlook.
A job half done is better than not at all. Maybe I’ll get the rest of these wreaths and other holiday decorations put away by February first…
My brother was visiting recently from Manhattan. It seems to me he’s been checking up on me often now that my son has left for college, and I have to say the company is welcome.
One particular day, I was obsessing about all the things undone around the house, including how filthy the windows have become after several years of neglect.
I can’t afford the professional window cleaners I employed when circumstances were different. But I certainly don’t have the energy to wash more than 20 windows myself.
So I was feeling frustrated, angry, and stressed about my lack of energy—and lack of money, too.
Just wash one, my brother said. One a day, and you’ll be done in less than a month.
LifeLoveLyme 