Thursday, October 22, 2009

Depression vs. Chronic Illness


I recently read an article about depression in a magazine. I was surprised how much the article resonated with me.

Sentences like, “The depressed make their world smaller and smaller until the depression becomes the centerpiece of their life”, really hit home. How easily could you replace the word depressed with chronically ill! Essentially, the “shrinking of my world” was prescribed to me by my doctor. He calls it “shrinking the bubble of my life”.

There was more. “Depression robs people of the ability to recognize others as sources of comfort…The depressed drain others and make it difficult for even the best-intentioned to be around them.” Wow, that is something I can recognize in my own life. Lyme disease is so hard to explain to others. I can feel the strain it causes on my friends and family when it comes to our relationships.

Have you ever read a list of “Symptoms of Depression”? Lack of energy, exhaustion, trembling hands, disturbed sleeping patterns, excessive worry, irritability, isolation, panic, worthless feelings, guilt, headaches, muscle pain, racing heartbeat, loss of appetite, excessive gain or loss of weight, loss of sex drive…

How do we manage to cope when the description of depression so closely resembles the life our illness imposes upon us?

Another relevant passage, “No type or amount of medication will build you a support network or make you more socially skilled. Good relationships are essential to establishing, maintaining, and restoring mental health”.

The shrunken bubble of my life does not seem to have much room left. It is only able to contain precious few things; me, my house, my doctors, limited family and friend interactions and, of course, my computer. I am not trying to shut myself away from the world. But what do you do when the potpourri of a store or the pitch of someone’s voice can cause physical pain?

Every dinner out with friends is carefully planned, even my doctors appointments are thought out. In addition to the pills and timing of meals, naps must be factored in.

We undoubtedly have reason to be depressed. But, we needn’t let the definition define us. We have a choice in whether or not we are sucked down into the depths of self-pity.

I read another article on the same day. This article suggested that it isn’t depression that is the problem with the “depressed”. The real problem is a lack of fun. If you are having fun, concludes the article, it is impossible to be depressed.

This new “illness” has been termed; Fun Deficiency Syndrome (FDS) or Lack of Fun Disorder (LFD).
While it may seem too simple or construed as belittling of people who legitimately suffer from depression, they have a point. You really can not be depressed if you are experiencing fun. It may only be glimmers here and there but they are real and in that moment of enjoyment you cease to be depressed.

For me fun use to be floating down a powdery slope with snow flying up all around me, climbing to the top of a rocky peak, eating and extravagant meal complete with a glass of wine and a beautiful dessert, traveling to all corners of the globe with nothing more than my husband and a backpack.
What is left of that life at present? Memories, photos, and longing. If I simply left it at that, I suppose I would be really depressed.

I choose not to be sucked down into the depths of depression and self-pity. I have carved a new life out of my circumstances. I focus on those things that I enjoy and spend the majority of my day pursuing them. I have “established” a support network filled with other Lymies who understand me and what I am experiencing. They really do help me to “maintain and restore my mental health”.


I am not depressed. I have no intention of being labeled with FDS. I am positive and excited about life. I enjoy the moment and I look forward to tomorrow. I find solace in my “support network” and I cherish the relationships and encouragement and laughter I find there. My life may not be a bowl of cherries but, every cloud has a silver lining.
____________________
Yapko, Micheal. “Secondhand Blues.” Psychology Today October 2009, 87-93
Kent, James. “The Perils of FDS: Fun Deficiency Syndrome” H+ Magazine October 7, 2009

Also posted at Lymenaide.com

Tuesday, October 20, 2009

Vote for UNDER OUR SKIN at IMDb

Okay Lymies, please, please vote for Under Our Skin at the Internet Movie Database. It needs at least 250 votes to be considered as one of the best documentaries of all time. You'll have to register to vote, but a small price to pay for all this film is doing for our cause. Who knows, maybe with enough votes it'll be nominated for an Oscar? If you haven't seen it--which you must--check out this list of nationwide screenings or watch it online or order your own DVD at the Under Our Skin site. Both Alix and I wrote reviews, Thank you, Thank you for this film and Under Our Skin Documentary A Hit.

Watch UNDER OUR SKIN Clip

Saturday, October 17, 2009

Remembering Jane

I began this piece last fall when Jane was still alive. Sadly, she lost her battle with lung cancer late last spring. She was a non-smoker. The week I returned home after being away for months of treatment, she entered the hospital for the last time. Our pact to heal together crumbled and I mourned a day that will never come.

Last fall, when Jane was beginning her second round of chemotherapy and radiation she wrote, "’I'm trying to soak in what this experience needs to teach me. I’m paying attention."

Powerful words. She was a special person.


Our family has faced it's share of medical challenges. All three of my children were born prematurely, the youngest, weighing just 2.5 pounds. The last six years brought countless medical visits for my daughter and I, several surgeries, the loss of my job due to illness, a quest for our restored health and finally diagnosis and treatment of Lyme disease for my daughters and I. We've been through a lot. What have I learned from our own experiences?

1) Never wear a watch. When you are waiting, the time goes by much faster without one.

2) Live in the moment. If your daughter wants to get the Christmas tree lights out in October and turn the dining room into her favorite soup and sandwich hang-out, join her. Just don't tell your friends when it starts to snow. : )

3) Find the gifts and blessings. Today, enjoying the beautiful autumn colors, listening to my daughters sing, reconnecting with friends. Blessings are all around. A phone call from a friend just to say hello. Dark organic chocolate. A smile and hug when your child runs to meet you from the bus. Family.

4) I've learned to trust my instincts more.

5) I've also learned you must be an advocate for yourself.

6) I try to stay level. As one doctor often reminds me, "You're running a marathon."

7 ) Accept help. My sister with breast cancer taught me the importance of this. Likewise, pay it forward.

8) If asked, "How are you doing?" I answer, "We're okay."

9) You can make the world better one smile at a time and always remember, your sense of humor is your best medicine.

10) Peacefully accept what you can accomplish in a day. Rest when you need to heal.

11) The best teachers are lifelong students.

I'm still learning, every day. Thank you, Jane! You were the best of both!

Tuesday, October 13, 2009

When Did You Get Lyme?

My daughters and I have Lyme disease. Like Alix, I was misdiagnosed with Lupus and finally was diagnosed with Lyme disease during the fall of 2008, my daughters in early 2009. It's been a tough road, but slowly we're making progress. I'm pleased to join the SpiroChicks team.

We've all been asked the question, "When did you get Lyme?"

I will never know when I was exposed or if I have been repeatedly infected, but I've certainly had ample opportunity. As a child, I spent five summers from the ages of 5 and 10, camping for entire summers while my father worked on his Master's at Central Michigan University's Biological Station on Beaver Island. Covered from head to toe with black fly, no-see-um and mosquito bites, it was a fabulous childhood and a pivotal influence on my adult life.

Our family spent the summer of 1976 camping while my parents cleared land and built their home in a wooded lot adjacent to a field frequented by deer. I loved to walk with my dog and ride my pony through those fields while growing up.

The run-in with ticks on a hike in the Porcupine Mountains?

During the fall of 1983 at Michigan Technological University, I spent a night in the woods with fellow classmates as we helped with an off-road rally, the Press on Regardless. I awoke days later, running a fever and covered from head to toe with tiny spots. The campus physician was puzzled by my illness. My son, born a year and a half later was 9 1/2 weeks premature.

Add a another red flag to the summer of 1989. I was taking field classes at the University of Michigan Biological Station. A chipmunk was a continual visitor to our dorm room. Did it carry a tick into our room?

During that summer, our class of 15 students and three instructors headed to Sugar Island for an overnight field trip. The group stayed in one cabin and some of us opted to sleep overnight under the stars, myself included. I still remember the beautiful stars and my giggles as my sleeping bag kept sliding toward the lake shore. When our class was preparing to return to the Station, I became violently ill with what at the time I thought were flu or food poisoning symptoms. However, I was the only one who became ill. I now know that a summer "flu", especially if no one else becomes ill, is a very red flag.

Within a few years, I could hardly walk due to arthritis in my right knee, I had daily sore throats, frequent respiratory and UTI infections and lost my voice at the slightest cold. A walk-in collision with a school bus mirror resulted in post-concussion syndrome, two weeks of missed work and months of short-term memory loss. I was bothered for many months, nearly a year, when an itchy sore on the back of neck in my hairline refused to heal. Students would remind me to eat protein when I would become weak and pale. Ten summers were spent at the University of Michigan Biological Station in northern Michigan.

Our current home backs up to a beautiful field. Deer frequent our backyard. I am a biologist and a nature photographer. Much of my life has been spent surrounded by nature. It is a part of who I am and what I love. My husband sides with the MTU theory. The truth is that we can only be sure of one thing. I've had it for a long time.

Monday, October 12, 2009

Ashley's Story


I grew up in Northern California. I’m not talking about San Francisco. I was four hours north of there in the mountains.
Like any kid who grew up in the woods; I was always outside, I hardly wore shoes, and I wasn’t afraid of getting dirty. Naturally I wasn’t afraid of bugs either.
I remember pulling a tick out from behind my ear. I can still see its little legs kicking in protest. With a look of disgust, I threw him on the ground. “Yuck”, was about the only thought I had about the experience. I was maybe 10. I don’t think I got Lyme from that one, he was too big.
I also remember getting spider bites. I never saw the spiders but I would occasionally wake up with a big, round, red ring of a rash around what appeared to be an unaffected patch of skin. Sound familiar? Yeah, well needless to say I am no longer so sure about my self diagnosis of spider bite.
It is hard to say when I was actually infected with Lyme. I didn’t really start suffering from an symptoms until I was 21.
In 1998 it started slowly with my stomach. Honestly it was pretty miserable at times but I just ignored it.
In 2000 I moved with my now husband to New Zealand. When we got off the plane I was in bad shape. It felt like someone had stuck a big wooden spoon into me and proceeded to stir my inards.
“Is this what jet lag was”, I wondered?
It quickly got worse. Besides the unbearable pain in my stomach I started having major breathing problems. I just felt like I wasn’t getting enough air. I also had trouble swallowing. The doctor gave me and inhaler for asthma. Ah, it didn’t help.
Life continued on with me in a constant state of panic. What the hell was wrong with me? My boyfriend’s advice- “Harden up Ash.” How very Australian of him.
On a trip to Germany in 2001 my boyfriend declared that the whole city of Munchen stank. Everywhere we went there was a foul smell. I was too embarrassed to tell him it wasn’t the city. Thankful though, that he didn’t realize it was me.
In 2002 we departed another plane, back in the USA. I was bad. Everything I ate or drank seemed to have an adverse effect on me. Mentally I was struggling too. At this point I thought the doctors were right. I was nuts, totally off my rocker. Lock me up and throw away the key!
My family blamed my fiance. My fiance blamed American food. I was pretty sure I was going to die soon. The latest doctor gave me drugs for IBS and acid reflux. Whatever.
I went to the doctors 13 times between January and March of 2003. Lots of drugs and no real answers.
At our engagement party in April, the guests must have thought I was on illegal drugs. I couldn’t even answer simple questions. I remember my mom encouraging me, as if I were a five-year-old, to answer for myself.
Another plane back to OZ and NZ. I was sick of it all now, and determined to figure this out for myself.
My self diagnosis -Candida.
I found a naturopath to help. She confirmed the candida and tested for parasites. I had a lot. She also did a food allergy test.
I took all this information and put myself on a diet protocol. No gluten, no dairy, no sugar, no alcohol, and no meat other than seafood. My wonderful husband conformed as well.
At this point I had added depression and fibromyalgia type pains in my legs to my symptoms. Enough was enough. My new protocol also included exercise. I started with walking 20 minutes a day.
Six months later I was still on the diet, running three miles four times a week and actually feeling healthy.
I felt pretty good in 2004 and 2005. I had ups and downs for sure but they were manageable.
In 2006 we went to El Salvador for two months. Maybe I got a new parasites or maybe it was that my diet protocol had long since flown out the window. Maybe it was the plane rides or too much time living at over 8,000 feet and working at closer to 10,000 feet. Maybe I got re-infected, I still wasn’t afraid of sleeping in the dirt. Who knows, but my health started to slide.
I decided to just accept my fate. I told my doctor that I was cursed with a sensitive digestive system and I was learning to live with it.
In the winter of 2008 the depression returned with a vengeance. I couldn’t cope. I was struggling to make it through everyday. I’m really good at putting up a front though. No one had any idea what I was going through. I wasn’t even sure what my problem was.
I nearly lost my husband because with no where else to find blame, I layed the finger on him. For some reason he stubbornly stood by me. I was lost.
That summer I gave in. Maybe I was nuts like the doctors had been saying for the past 10 years. I went to see a shrink.
Well, she didn’t think I was crazy. She thought I was sick. How’s that for a Catch-22!
In the fall I reluctantly went to see another doctor. It was getting too serious to ignore.
She tested me for everything under the sun. I was surprised there was any blood left in me after all that!
There appeared to be a handful of minor things wrong with me including, Lyme disease.
I didn’t like her. The medications and supplements she put me on made me feel like I was going to die and I kept breaking out in hives. Nothing was explained to me.
I stopped seeing her after two months.
It was four months later when I went to se a chiropractor that I learned about Lyme disease.
He lent me his copy of Under Our Skin. My husband and I watched it in horror. Was that what we had to look forward to? Did I really have Lyme or was this just the latest in the long list of  the so called “diagnoses” I had received?
The LLMD told us about Lyme. He asked questions about my past and my symptoms. Magically all the broken pieces of my life seemed to fit back together.
I had Lyme alright, and co-infections and viruses.
Would I change it if I could?
No. Like so many others I have discovered so much about myself that I would have otherwise never known. I have become a better person because of this disease.
Do I want to be healthy? Yes.
Emotionally I am in a much better place now then I have been in years. Physically I struggle but, there is a light at the end of the tunnel.
Also posted on lymenaide.com

Friday, October 9, 2009

Vote for Jen -Lyme Disease Awarness

Jennifer Wilson is in the running for the Nature Made SAM-e “Good Mood Gig” Talent Search!

What is the “Good Mood Gig”?

It is a blogging job. Jen will be required to post five articles a week for six months. This job is a great chance for her to show off her good mood by writing a daily blog post about the things that make her happy.

What does this have to do with Lyme?

Jen has Lyme. She wants to use this position to help spread the word about Lyme disease. She also wants to inspire others whether they have Lyme or not to be positive!

Hey!!! I want to represent the Lyme Community and show the millions of users of Sam-E how a chronic lyme patient lives daily life but I have to get a lot of votes!!! I need your help!!! 

My name is Jen Wilson and I was diagnosed with Lyme Disease when I was 11 years old. I am 23 now and relapsed about a year and a half ago. But I have been struggling with Lyme my whole life as I was taken out of high school for 2 years and college was extremely difficult and I had to withdrawal.

I was the classic Lyme patient going to doctor to doctor being diagnosed with chronic fatigue and eventually MS. I finally found an LLMD about a year ago and have been on antibiotics ever since. I also have several co-infections as most chronic Lyme patients do. In February I lost my hearing in my right ear and no one knows if it will ever come back.

I have an opportunity to represent the Lyme community in a blog on the Natures Made website. They are looking for a daily blogger and I would love to blog everyday about living with Lyme. I want the world to see our daily struggles and have them try to understand what we all have to go through. The blog is also about optimism so I really think that I’ll be able to change many peoples opinions of us. Please go to the website all you do is have to click Vote For Me. You can vote once a day and we only have until October 30th to get as many votes as possible. Thank you!  -Jen


VOTE FOR JEN

Thursday, October 1, 2009

The Risk I Will Not Take


I wish that my children were already born. I know that they would most likely have Lyme disease. I know that it would be hard and I would feel guilty that I had given them my disease. But, at least they would be, and now, they most likely never will.
This is one of the most difficult things for me to deal with when it comes to having Lyme. I am 32 years old. I have been with my husband for 10 years. I have always imagined that we would have a family of our own. 
If our children were already here, I would be innocent of their health. They would have been born to a mother who had no idea that she had Lyme disease, no idea that she might be passing it on to her children. But, I am not that innocent mother. I know. I know the risk to my unborn children and I know the realities of Lyme disease. 
I hold on to the hope that their will be miraculous discoveries in the field of tick-borne illnesses in the next few years. That they will discover a way to ensure my baby’s health.


I may have made my decision, but I am not yet ready to face it as reality. 


Adapted from, follow up to Stolen Dreams originally posted on Lymenaide
(The photo is of my niece who I am lucky enough to get to live with for the first year of her life!)