Friday, May 6, 2011

This Crazy Lyfe: Kristen Gasser

As a writer, getting a feel for how people manage crisis is often best served by reading first hand accounts. After all, reading a diary by someone who lived during Civil War times will give a different insight than a history book written over a century later.

Earlier this week, I posted an interview with author Brandilyn Collins. Her novel, Over the Edge, centers around a woman who has been infected with Lyme Disease. Don't forget, leave a comment on this blog this month to be eligible to win a copy of this novel and another great surprise!

A good friend of mine has dealt with Lyme Disease for twenty years. Today, she posts a first hand account of what it's been like. Welcome, Kristen!

So, reality is, you don’t get superhuman powers when you’re bit by a tick. Instead, you get super crazy symptoms and doctors that don’t know what to think of you.

You tell them you are beyond tired and have major joint pain in your knees and hands, muscle weakness. They tell you to exercise more. You do. That makes you physically ill with vomiting and such. It makes the joint pain worse. You tell them exercise makes you sick and doesn’t help the tiredness. The doctor tells you you’re just depressed and prescribes something to help.

If you don’t take the prescribed pills, you’re told you’re rebellious. You look for a new doctor. The new doctor takes one look at you and says, “You look perfectly healthy, what are you doing here?” You reiterate your complaints as explained to the first doctor adding, “I’m having memory problems.”  He says, “Everyone forgets things, that’s normal.”

You know it’s beyond “normal”.

You tell him you have chest pain and were diagnosed with Mitral Valve Prolapse. He listens and muffles a laugh, saying he can’t hear anything and alludes that you’re a hypochondriac.

So, you go on about lyfe, as best you can… trying to live “as if” you’re healthy.

Finally, a doctor puts the pieces together. You were rock climbing in Wisconsin? The symptoms came on soon after? A tick bite? A test confirms it: Lyme disease.

But you were treated for what was assumed to be Rheumatic Fever. That should have taken care of the Lyme disease. We’ll just give you one more week of a more powerful antibiotic and consider you cured.

Then, one day, you’re in class and you just don’t feel right. You head to the bathroom, get very sick in every way possible, clean up, and everything goes fuzzy. You hear people talking, you can’t move, can’t talk. They put you on the stretcher and take you to the ER. In the end, they can’t figure out what’s going on, so they prescribe an antibiotic, they’re not even sure what it’s for.

It goes on like this for awhile. More symptoms that don’t make sense (digestive problems, bladder problems, eye problems, thyroid problems, back pain, canker sores, headaches, food allergies, anemia, dizziness, insomnia, heat sensitivity, brain fog, and that confounded fatigue).  You get tired of the doctors laughing at you, alluding that you’re a hypochondriac, acting arrogantly because you ask intelligent questions and hearing time after time, “Lyme Disease IS NOT a chronic illness, something else is causing your vast and varied symptoms, but we don’t know what.” 

You feel like you are supposed to try to go on and live lyfe “as if”…

So, you try the “natural” route: eating healthier, eating organic, supplements, herbs, juicing, cleanses, chiropractic visits. This seems to stay the symptoms at times, but there is something lurking underneath, literally… and nothing seems to really help.

For 20 years, (half of my life!) this has been my story. Well, the short version.
And I’m still trying to process the connection between Lyme Disease and all the other issues my body has. I guess it starts with thinking back to the beginning and feeling like something invaded my body and caused it to turn against itself. And there is the concern that even if I treat all of these symptoms, but the Lyme connection is ignored that it will find another part of my body to attack.

The initial blank stare I get from doctors and the feeling of every doctor wanting to ignore the diagnosis of Lyme disease makes me feel like everyone just thinks I’m crazy.

I do not want sympathy.

I do want support. Acknowledgment that I’m not crazy. Respect that I do know my body and knew 20 years ago that something wasn’t right. I want a doctor to take some time to look at the possibility that Lyme can trigger an autoimmune response in my body, that it can cause the joint pain, fatigue, and muscle weakness.

I feel alone in this when every doctor wants to ignore it. It is a very real part of my life. When they dismiss it, it hurts. It makes me feel belittled. The result is me trying to act “as if” I don’t have a chronic illness. It makes me afraid to talk about it. Makes me unsure of myself and my ability to communicate. And it makes me push myself beyond my limits, which makes the symptoms worse.

I haven’t even mentioned the emotional aspect to this. And I really try not to let on how scared I am at times. I joke about the weakness, the “having to go to the bathroom so often”, forgetting things, flipping words and letters around. It was difficult having doctors tell me I needed to be doing more, telling me I was depressed.

I did feel like a hypochondriac, still do at times. I felt like I had done something wrong to cause what was happening in my body, yet had no control over stopping it. I still feel this way.  I don’t know how to communicate about this illness, how to help doctors (and friends) understand that, while I don’t look ill, I am.

I have limits.

I have to have limits so I can keep pushing on without falling too hard while living “as if” in the reality of this crazy lyfe.



  1. Hi, Kristen,

    Gosh, I'm so sorry you've gone through so much for so long – your situation is rough. My 14-year-old son never tested positive, but I know he’s still battling Lyme’s (at the same time my husband was enduring intense treatments for head and neck cancer and I had two major surgeries; unbelievable, I know). After taking my son to seven different specialists last fall, an orthopedist agreed my son has Lyme’s. This MD flat out told me he’s not scared of the CDC (with the Lyme’s controversy) – he’ll treat my son and refer him to other MDs as necessary regardless of a negative Lyme’s test. Today, my son still suffers with bilateral knee and ankle pain and crepitus, ptosis, as well as heightened allergies, but all the other symptoms seem to be resolved, however I don’t know if I’m just being too positive (my son is also an overly positive person). He’s a hockey goalie for the Jr. Hurricane’s and is on the path to play in college, but goalie is tough on the leg joints, so it heightens his symptoms. As an EMT, I wonder if my son needs additional treatment. The orthopedist recommends a scope of his knees, but my son refuses (not wanting to take time off of hockey), so I guess he’s not hurting too badly. As a mom, I wonder if he’s just in denial.

    There are so many Lyme’s stories out there – THANKS for sharing yours. When my son gets home from school today, I’ll have him read your post. Hopefully he’ll say, “Gee, mom, that woman has suffered way more than me. I’m fine.” And hopefully I can trust that it’s reality.

    Good luck to you !!!! You’ll continue to improve and then finally beat the disease because you’re tough and determined!!!

    Blessings to you,

  2. Thank you for sharing your story.Your feelings are legitimate and I hope that you have some kind of support group or friends to share with. Reading your story and Jordyn's interview with Brandilyn has opened my eyes to many things I didn't know about Lyme disease.

    We found out that our family has celiac/gluten issues when one of our sons was chronically ill in his early teens. It was a battle finding out what was going on with his immune system and a relief to finally have a diagnosis we could learn how to deal with.

    Thank you for sharing the reality of your life with us.


  3. Dianna, thank you so much for taking the time to comment. How is your husband doing now?? I can't fathom going through Lyme along with all that your family has endured. I will be praying for all of you!!
    I am glad your son has a doctor that recognizes that Lyme is real!! After 20 years, I just now found a Lyme Literate Doctor! Just remind your son to pace himself. One of the keys to keeping the symptoms at bay is resting when our bodies tell us to (much easier said than done!). Eating as healthy as possible helps, too.
    One thing I didn't mention in this version of my journey is God's design. He has taught me so much through this crazy lyfe... I hope to journal it all so I never forget. I will pray that your son has strength for whatever journey God has in store for him. I do know it is easy to live in denial when things we enjoy are at stake... He is young, which is a huge benefit when it comes to the body fighting this!! I will pray he is able to continue with hockey!!

  4. Thank you, Elaine for taking the time to read my story. I agree that having a diagnosis is a relief... it helps so much to know what you are battling.
    Celiac is a complicated disease! I have a gluten sensitivity, so I know to a small degree what that is like. What a blessing that there are so many food options at the grocery store now.. but I know that Celiac is so much more than staying away from gluten.

    I do have to say that, while I don't like all that goes along with Lyme, I have learned so much through it that I wouldn't trade this journey. I do wish I could prevent others from having to go through the myriad of symptoms, which is why I like to do what I can to educate others about the dangers of ticks and the complications of Lyme Disease.
    Thanks for taking the time to read!!

  5. Susan,

    Thank you so much for your comment. Sorry that you had trouble leaving your whole comment. I'm going to post your shorter one here but remove your e-mail address as you requested. I've forwarded your comment and e-mail to Kristen.

    Of course, I'll keep your name in for the drawing.

    Susan Hornbach says: Kristen, I wrote a very long comment here but it was errased by your system before I could post it. I am the image of you with the same symptoms. I do have a lot to say, and just want you know, you do have my support and I acknowledge that you are not crazy. I have found ways to make myself feel better and would like to share with you.

    Many Blessings.... Jordyn

  6. Thank you Jordyn, I appreciate it. I am enjoying your blog and became a follower. I read quite a bit on natural cures and supplements, as my experiences have been that doctors are so very stumped with trying to help me. I finally realized that if I didn't do something to help my self,I would probably die. It is true that if you appear well, that some doctors will make you feel degraded, if you allow them to, that is. I do not any more. There are so many cures for so many things out there. It's just that we are all not informed about most things outside the realm of big Pharma. Integrative medicine is on the rise, and I am so happy about that, as I feel there is room for everyone in the field of healing.