Friday, February 16, 2007


On February 15, 1998, nine years ago to the day, my husband got down on one knee and asked me to be his wife. And I said yes. Four and a half months later, on a beautiful Friday night- we exchanged vows that included to love and cherish in sickness and health. Call it naivety or maybe even stupidity... but I don't think either of us ever thought we'd really be called to live out the "in sickness part".

Yet- nine years later, here we are. And Lyme Disease has dominated our lives. Let me preface my post today by saying I AM GRATEFUL that my concerns are related to a disease that has a great survival rate. I try to keep that in mind daily.... but it continues to take it's toll on me... on us... on our family.

Since January of 2005 I have been facing muscular, neurological and emotional symptoms of Lyme disease. At first it was just sore arm muscles and lower back pain. (Originally contributed to the fact that I gutted and replaced our kitchen AND coached a fast pitch softball team) But by June it was neurological- with 30 pounds of muscle wasting in a month, inability to eat more than 100 calories a day, muscle tightness, muscle twitches, and an inability to control my emotions one way or the other. This led to many ER and Neuro specialist visits. And all said originally that I was fine... just needed antidepressants for all the crying. (As if I was crying just to cry and NOT because my muscles were wasting, I couldn't walk well, the twitching wouldn't resolve AND I had three children to be the mother of...) In the middle of the process I heard some of the most hard and hurtful comments anyone should ever hear (though unintended I am sure.) ...

"If you would only just eat something maybe you wouldn't be so weak and would be able to walk" (as if I didn't think to eat) or

"I'm sure you're making more of it than it is... if there was something to be worried about the numerous specialists would have found it." (You would think so right? Thankfully however, I was my own advocate. Had I listened to the Cleveland Clinic specialist... I would have "Gone home and enjoyed my family" while the Lyme destroyed me. Instead I found a Lyme Specialist and Antibiotics that handle the Lyme for the most part.) or

the Neuro specialist saying (as noted above), "You are overwhelmed, you have three children, you just need antidepressants" or

These words from a Pastor... "If you die it is because of your sin." (This one I had to deal with for a good part of the beginning of my illness and I really believed I was going to die...and soon... and I couldn't figure out what sin I hadn't repented of...) AND

well the worst of all comments- "Whatever this all is, you sure look better than you ever have." I can't even comment on that as the comment alone completely destroyed me.

Here's the thing... and on this I will comment. It is a lonely world when you have something chronic like this that is not understood (or sometimes, not even acknowledged) by those closest to you. It's a lonely process to have to deal with symptoms daily when outwardly it appears I am fine and well. Everyday in my world I deal with tingling, numbness, muscle pain, muscle tightness, muscle twitches, extreme fatigue, terrible headaches, stiff necks, lower back pain, difficulty swallowing and to be extremely honest, to some extent... paranoia, anxiety, frustration (an exaggerated level... shortness, quick tempered etc.) and well, depression. It's not easy to feel like all of this happens on a daily basis and on some level ...I am alone.

The reality is everything is still very much expected of me. Keep house, raise children, thrive in marriage, home school, grocery shop, prepare meals, laundry, discipline, work, go to church, encourage, play, organize, and maintain relationships. When these tasks go unmet I am immediately on the chopping block. And worst of all... the result is always that I am lazy and or indifferent. When in reality, there is nothing further from the truth. On days when I have the energy and am feeling well... I am all in. 100%. I am making up for lost time- load after load of laundry... interacting with the children, encouraging creative play and time for reading, cleaning my house which has suffered from my non involvement... But I drain quickly and easily. And sometimes without warning. And my recovery time is longer than what it used to be. I need more rest, more sleep and less activity to get back to that burst of energy.

I am a slave to Lyme Disease. Maybe some people handle things better. Maybe some people have Neurological Lyme and no one around them knows because they are able to keep everything in check all the time. I can't however. I've never been a complainer regarding my physical issues... for Pete's sakes... I had three children, INDUCED with Pitocin, WITHOUT MEDICINE!!! I don't complain. But today... for reasons unknown to me, I feel the need to throw myself a pity party.

The truth is- Lyme has indeed taken a toll on more than my body. Our finances are being tackled. I am expensive... what can I say? The treatment for the most part is viewed by the medical community as unnecessary. After 4 weeks of antibiotics, physicians believe I should be well. I am not however... and it has been 18 months.

Lyme also is taking a toll on marriage. From day one it has placed stress on our relationship. Where I believe the initial stress was linked to the fact that we didn't know what this was and we both wondered if I would even "make it" through... much of the stress now comes from the financial pressures, and I think the lack of understanding for the disease itself. As I said, most of the time I feel alone because I am dealing with Lyme despite the fact that on the outside I appear well. And I have my moments almost daily, where I wonder if Cleveland Clinic was right when they said they believed this to be ALS. In my mind I know ALS = 3 to 5 years to live. So- it's no hidden truth that I count each day toward the 5 year mark.

There I said it. I worry. My Lyme Dr. said 6 months ago they linked ALS to a strain of Neuro Lyme. That's not good news for me. And it's something on my mind every single day. Something no one else can understand. Actually- it's the thing I find myself admonished for most...

"Don't worry for tomorrow, today has enough cares of it's own."

"God cares for the sparrow, surely he will care for you"...

"God's timing is perfect... learn the lesson he has for you so your health can be restored."

I am grateful to be alive and to spend every day with my children. I can't lie however and say I don't have moments where I cry and ask WHY my life has to be less than what it would be were I to be healthy!!!

And with all honesty... I've become so angry with a God that could allow this to continue like this. (PREFACE- I know God is real, true, perfect and loving. I don't dispute Him. ) But I have days... and right now it seems like weeks, where I am wondering WHERE HE IS! and WHAT HE IS DOING!!!!

I need help. I need health. And I wonder daily if and when God will intervene. It's hard for me when I know that God has everything and can enlist anything to help and heal me but daily I see that he chooses NOT to. WHY?

the love of God supposed to be the most all inclusive, overwhelming, secure, accepting, unconditional love I could ever experience? The more I know of Him and all He COULD do if He so chose... the more INSECURE I feel as I realize how many days go by and how many times He chooses NOT to do anything in my situation.

I feel like I'm not God's... the Lyme owns me- it's destroying me... it's destroying my family, my relationships, my marriage, my health, my energy, our finances, my patience, my friendliness, my ability to be accepting, my time.... and my body- physically. EVERYTHING is taking a hit- and yet God is not intervening.

I'm not asking to be different, special or extreme. I want very much to be average, normal, ordinary. I just want the opportunity to raise my children, with Paul and to die OLD... after experiencing weddings, babies, anniversaries, retirements... with a quality of life that means I can invest in each of the relationships that are important to me.

Is that too much to ask? Days like today- it seems that it is.


Tara said...

First, it isn't a pity party.

Second, I totally understand the where is God sentiments and I'm sorry you've been told some of the things you have. I know we've talked about some of this and I'm sorry it's something you're still dealing with.

Third, I'm here to listen if you want to talk. Or scream. :)

Fourth, Happy Engagement Anniversary!

Love you.

From Dillsburg said...

It is very difficult no doubt about that!! You are always in our prayers. Wish we lived closer so we could be more helpful. We miss you, Paul and the grandchildren. Two big birthdays coming up!

Sarah said...

HAPPY ENGAGEMENT DAY! What a fun day to remember ;)
Oh my dear! You sweet soul. No pity party, VENTING is wonderful. About God, you know he is right there beside you, lean on him and not your OWN understanding! I try to understand as my mother goes through uncurable cancer and a failed marriage, I am almost sure he is trying to draw her to him in ALL things. I am so sorry you feel isolated and ill with peoples words!
I am here and have always been here for you. And lastly, just remember the fun night at Panera, a time where there was NO K-girl and another baby for me was not to be! YIKES!
Love ya! Sarah