Thank you to these 4 women who participated in this short video interview by The Poughkeepsie Journal. I believe that it is our stories that are causing politicians and the public to sit up and take notice of this illness. And this is one of the reasons for my blog - to add my story to the thousands of other stories out there.
How can we continue to deny all of this clinical evidence for chronic Lyme disease? Well, the answer is, we can't. There are just too many people with the SAME story to ignore!
As I listen to these women, I feel like it is 'me' talking.
Faces of Lyme - If the video does not appear when you click on the link, you will see a search bar on the website. Just type in Faces of Lyme, and the video should appear in the group of recommended videos. Click on it from there.
*I seem to be having trouble accessing the video a second time from my computer. I think it may restrict multiple viewings because they want subscriptions. Please let me know if you are not able to access the video. I have had no trouble accessing it from Facebook. Go to the California Lyme Disease Association on FB, and find the status update there.
Saturday, August 18, 2012
Thursday, August 16, 2012
Know where your help comes from
This past week, I've felt the Lord nudging me back in His direction. When exactly did I start to stray, and begin to rely more on myself and earthly things or other people, rather than on Him? I think that started to happen as I began to feel better, physically.
When I was really ill last year, I literally threw myself at His feet, praying for the things I needed most to survive:
And He carried me.
At the time, a friend of mine told me that in situations like this, God usually doesn't heal 'overnight', but over a period of time. I knew this would probably be the case for me. He was going to teach me trust and patience.
So I waited. And I prayed. And I waited.
In His timing, He answered my prayers, and granted me each of the things I had asked for. My anxiety got under control. Just last month, I was able to stop taking sleep medication, so my sleep has been restored. And through His strength, I managed to endure the last year and a half and come out the other end with a renewed perspective on life and faith.
But new fears are creeping back in! It's as though I hadn't learned anything in the last year! And this reminds me of my frail humanity, my propensity to sin, and how easy it is to forget where my help ultimately comes from.
So what are my fears? I am returning to my teaching job in September, just a few short weeks away. Will I be able to handle it physically? What if I'm too fatigued? How will I keep the stress under control?
As I consider a potential 'end of treatment' in the next while, I find my thoughts turning to worry. Will I relapse? Many people do. What will I do if that happens? I won't have any more sick days to rely on, and getting long-term disability for something as controversial as Lyme disease would be an uphill battle.
So today, I got a reminder from the Lord, via another Lyme sufferer. Thank you, Christa. This video was on my Facebook news feed this morning. I need to keep my eyes fixed on Jesus who WILL take care of me and guide me and give me peace in all of the circumstances of my life.
When I was really ill last year, I literally threw myself at His feet, praying for the things I needed most to survive:
- endurance
- sanity
- restored sleep
And He carried me.
At the time, a friend of mine told me that in situations like this, God usually doesn't heal 'overnight', but over a period of time. I knew this would probably be the case for me. He was going to teach me trust and patience.
So I waited. And I prayed. And I waited.
In His timing, He answered my prayers, and granted me each of the things I had asked for. My anxiety got under control. Just last month, I was able to stop taking sleep medication, so my sleep has been restored. And through His strength, I managed to endure the last year and a half and come out the other end with a renewed perspective on life and faith.
But new fears are creeping back in! It's as though I hadn't learned anything in the last year! And this reminds me of my frail humanity, my propensity to sin, and how easy it is to forget where my help ultimately comes from.
So what are my fears? I am returning to my teaching job in September, just a few short weeks away. Will I be able to handle it physically? What if I'm too fatigued? How will I keep the stress under control?
As I consider a potential 'end of treatment' in the next while, I find my thoughts turning to worry. Will I relapse? Many people do. What will I do if that happens? I won't have any more sick days to rely on, and getting long-term disability for something as controversial as Lyme disease would be an uphill battle.
So today, I got a reminder from the Lord, via another Lyme sufferer. Thank you, Christa. This video was on my Facebook news feed this morning. I need to keep my eyes fixed on Jesus who WILL take care of me and guide me and give me peace in all of the circumstances of my life.
Kari Jobe
Steady My Heart
And I would like to add one more song by Joy Williams, whose lyrics also help to strengthen me and remind me that my Heavenly Father is my Rock and I need not be afraid.
Joy Williams
Unafraid
Monday, August 13, 2012
Managing Your Health Care
When you begin treatment for Lyme disease, you need to be an active participant. You need to find a system to keep yourself and your information organized. This may be very difficult to do, given the way that you feel and the mental fog that you have. Perhaps you can find someone to help you with this. It's very important.
When I became ill, and before I knew what was wrong with me, I had a small coil notebook that I wrote everything down in - phone calls I'd made, things I had found on the internet, doctors I had contacted, symptoms I had, etc. I kept my loose papers in a file folder, things such as test results. However, over time, I outgrew this method! I had too many things to file, and I really needed a better system.
So off to Staples I went, and I bought a big binder and some dividers.
My dividers have the following headings, but you can tailor yours however you like: History, Lab Work, Doctors' Reports, My Blog, Managing Lyme Disease, Dr. L., Miscellaneous.
The binder has filled up! I may soon need a bigger one.
Before you visit your LLMD for the first time, it will be very important for you to have all of your previous doctors' reports, test results, etc. available for him/her. It is also recommended that you write out a history of your illness: when did your symptoms start, what symptoms do you have, what doctors have you seen and when, etc. Write it out like you were just telling the story to someone, then afterwards, you (or someone else) can summarize it in point form.
During your treatment, it will be very important for you to keep track of your symptoms, so that you can see the progress you are making, and so you can give your LLMD an accurate report when you see him/her each time. It also helps you to figure out if you might be having any herxheimer reactions.
Some people use a symptoms checklist, which is a great idea. You can write out all of your symptoms in chart form, and rate them daily or weekly on a scale of 1 to 10. You can find sample checklists by doing an internet search or checking out other Lyme blogs.
I chose to make jot notes on a calendar. That was a better system for me.
Before my appointments with my LLMD, he asks me to write a paragraph about how I was feeling the past 6 weeks. I can then just look back at my calendar and summarize what I had jotted down. He also has me fill out a symptom checklist at his office each time.
Look at last month's jot notes:
When I became ill, and before I knew what was wrong with me, I had a small coil notebook that I wrote everything down in - phone calls I'd made, things I had found on the internet, doctors I had contacted, symptoms I had, etc. I kept my loose papers in a file folder, things such as test results. However, over time, I outgrew this method! I had too many things to file, and I really needed a better system.
So off to Staples I went, and I bought a big binder and some dividers.
My dividers have the following headings, but you can tailor yours however you like: History, Lab Work, Doctors' Reports, My Blog, Managing Lyme Disease, Dr. L., Miscellaneous.
The binder has filled up! I may soon need a bigger one.
Before you visit your LLMD for the first time, it will be very important for you to have all of your previous doctors' reports, test results, etc. available for him/her. It is also recommended that you write out a history of your illness: when did your symptoms start, what symptoms do you have, what doctors have you seen and when, etc. Write it out like you were just telling the story to someone, then afterwards, you (or someone else) can summarize it in point form.
During your treatment, it will be very important for you to keep track of your symptoms, so that you can see the progress you are making, and so you can give your LLMD an accurate report when you see him/her each time. It also helps you to figure out if you might be having any herxheimer reactions.
Some people use a symptoms checklist, which is a great idea. You can write out all of your symptoms in chart form, and rate them daily or weekly on a scale of 1 to 10. You can find sample checklists by doing an internet search or checking out other Lyme blogs.
I chose to make jot notes on a calendar. That was a better system for me.
Before my appointments with my LLMD, he asks me to write a paragraph about how I was feeling the past 6 weeks. I can then just look back at my calendar and summarize what I had jotted down. He also has me fill out a symptom checklist at his office each time.
Look at last month's jot notes:
That's right! There are NONE! That's because I'm feeling quite good. I really don't have much to write about, except for tiredness and a few minor sporadic symptoms.
I hope this information will be a help to you in learning to manage your health care.
Monday, August 06, 2012
A story with a happy ending
One thing people love is stories, especially happy stories with happy endings. They lift us up and give us hope. And I'm not sure how many of us would be able to get up in the morning, and carry on, without some hope in our hearts.
The young woman in the photograph is doing a cartwheel—something she couldn’t do six years ago, when she was wheelchair-bound from Lyme disease. At that time, her body was wracked with pain, 24-7. She had a cascade of other symptoms as well, which made it impossible to go to school, to carry on with normal daily activities, and often, even to get out of bed. Life seemed bleak indeed.
Yet, out of her pain and misery, Rachel created a gift that has just recently resurfaced. In March 2006, she spoke to a video camera about how she was feeling and her frustrations with doctors who refused to recognize that Lyme disease even exists in California. It is a visual record of a young teenager trying to make sense of her desperate situation. Her demeanor seems calm, but if you study it closely, you can see the fear and vulnerability trembling below the surface.
But here’s the twist. Last weekend, after she re-discovered her earlier footage, Rachel recorded her present, healthy, walking self, responding to the same questions her younger self had answered. She edited the old and new together, cutting back and forth between 2006 Rachel and 2012 Rachel.
Together, the two Rachels have valuable wisdom to impart. Take a look:
TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s VP for Education and Outreach. Contact her at dleland@lymedisease.org.
Lyme disease CAN be managed! Whether or not it can be truly 'beaten' remains to be seen and to be researched. But it IS possible to recover and live a normal life again. Sometimes, it takes years, but it CAN happen.
Do not give up hope!
Here is a great article that I read on LymeDisease.org. So encouraging. So uplifting. I love how the 14 year old girl, and the 20 year old woman (both the same person!) are juxtaposed. So well done. So effective.
TOUCHED BY LYME: 20-year-old’s advice to her 14-year-old self: “You gotta have hope” 1st May 2012
The young woman in the photograph is doing a cartwheel—something she couldn’t do six years ago, when she was wheelchair-bound from Lyme disease. At that time, her body was wracked with pain, 24-7. She had a cascade of other symptoms as well, which made it impossible to go to school, to carry on with normal daily activities, and often, even to get out of bed. Life seemed bleak indeed.Yet, out of her pain and misery, Rachel created a gift that has just recently resurfaced. In March 2006, she spoke to a video camera about how she was feeling and her frustrations with doctors who refused to recognize that Lyme disease even exists in California. It is a visual record of a young teenager trying to make sense of her desperate situation. Her demeanor seems calm, but if you study it closely, you can see the fear and vulnerability trembling below the surface.
But here’s the twist. Last weekend, after she re-discovered her earlier footage, Rachel recorded her present, healthy, walking self, responding to the same questions her younger self had answered. She edited the old and new together, cutting back and forth between 2006 Rachel and 2012 Rachel.
Together, the two Rachels have valuable wisdom to impart. Take a look:
Rachel currently attends college in northern California.
TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s VP for Education and Outreach. Contact her at dleland@lymedisease.org.
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