Learning to Live with Lyme...

I never thought I would find myself in this position, in some way we all see ourselves as invincible.....but that all changed for me in May 2009. I had decided not to blog about Lyme because I didn't want lyme to define me.....but as time has passed I find myself reading other lyme patients blogs just to reassure me that someday I'll remember what normal is again. Lyme is such an unforgivable foe.....it affects every organ system of the body and can migrate from one place to another from one hour to the next or from one day to the next. It all began with some mild confusion and what seemed to be panic attacks. I've always been a very emotionally stable person never waivering between good moods and bad moods. I was always happy and always focused on the good in every situation. But I found that I would feel tearful for no reason at all, I would get disoriented to the point that I was afraid that I was loosing my mind. Embarrassed at first by the symptoms.....I didn't tell anyone what was going on. I had recently started a new job and my nurses would come up and talk to me and it was a surreal out of body type of experience as if I was standing aside watching what was going on but not really being able to comprehend what was being asked.....Ohh, I did the best I could at covering up the symptoms, but then I began developing a fever, swollen and very painful joints. I worried about rheumatoid arthritis as the joint pain had affected my toe joints which was very uncommon. Then the dizzy spells began....my commute one way to work was an hour and on many days when I was the opening coordinator I would get up at 3 am to be at the surgery center by 4:30 so that I could get myself together and begin to prepare for the nurses arrival at 5 am. I would have many days that pulling over 4 or 5 times on the way to work to vomit was not uncommon, many days where the center line moved back and forth on the road and I would find myself not knowing if I was in the correct lane or not. As the lyme began to take its toll, I ended up having to resign my position (a job that I loved dearly) as my mother had been diagnosed with terminal cancer at the same time. It's hard to help people to understand the face of lyme unless you've experienced a day in it. A lyme patient can change on a dime. Great one moment and useless the next. I've went to bed on more occasions than I care to remember wandering if I would awaken the next day. Then only to be tied up in a political battle over the treatment of lyme. It seems that the CDC has its set of guidelines to treat lyme which entails a month of antibiotics and then they say your cured. I settled for this for about a year. While on the antibiotics life was at least functionable but off.....life was a living breathing hell. Most doctors steer clear of treating lyme because many doctors that treat long term lyme are being sued for doing such by insurance companies. I was sent to see a rheumatologist due to the ongoing joint pain and he immediately says its not lyme its rheumatoid arthritis. I've got the positive lyme results in my hand, know that I've been bit by a tick and know that I've been sick ever since. WHAT part of that do they not understand. I've been told that its just post lyme syndrome and that the symptoms just have to run their course.....easy for them to say when they aren't running daily fevers up to 100.6, living in excruciating joint pain, so dizzy that a drunk could walk a straighter line than I could, heart arrhythmias, nausea, vomiting, migraine type headaches and oh the inability to sleep the one thing you would like to do when you feel so bad. But yet they say this is normal....finally after much research and a God moment I was given a phone number of a lyme specialist that has actually had lyme himself. I have come to learn far more than I ever knew or wanted to know about lyme disease. I want my life back, I want to wake up in the morning and be ready to tackle a full day of work, mowing, landscaping and all the things I love to do...but instead I wake to joints that are froze up and find myself having to soak in epsom salts just to be able to move. I've tried to keep active and walk up and down the driveway.....many a time carrying a phone with me because I wasn't sure if I could make it down the driveway and back without blacking out. Lyme has though given me the ability to slow down and see whats really important in life. I now see how hurried everyone else is and the impatience of people today. I have learned that life is full of uncertainties and that each day that I have a good day is a gift from God. It's my hope that through this writing people can begin to understand the devastating toll that lyme presents and how important it is to prevent this disease. This is the card I've been dealt right now....not the card I asked for but the one that I have been given. Life today is definitely different than what I thought it would be at this time of my life but I'm learning to appreciate even the small gifts in life. Don't make an illness wake you up to the beautiful gifts of life that surround you everyday.

Don't Know How I Got Here...

I don't know how I got here...not in that sense of the word. I know about the birds and bees, momma and daddy and the like...I mean how did I get HERE to my blog site today. I wasn't even trying to get to my blogsite and I must have hit a wrong button and now I find myself here. I don't want to be here today. My mind has seemed so foggy lately that I avoid my blogsite thinking that I don't know what I am supposed to write and are my thoughts clear enough to convey what my heart feels and thinks right now. I don't know if it just fatigue from taking care of a dying parent, the remnants of lyme or is this just me right now. YIKES, hoping its not the latter of the three. I miss work...I know...most of you are saying wow I wish I could have an extended vacation. NO, you really don't. We all get this sense of accomplishment from our jobs, for what we do everyday to make a difference in some way. I'm struggling with that lately. I look around me at a world that seems to go on with everyday life and I want my old energy back, I want my old mind back, I want my old life back. I guess you could say I feel stuck. I feel like the turtle that you stumble across in the timber that is lying upside down on his back wandering first off how he even got in this position to begin with...he didn't ask to be upside down, left on his back with no physical means of turning his now upside down world upright again. He lies there and just watches as the timber scurries with life around him, the squirrels gather their nuts...oh, yeah they notice that he is now upside down but what are they to do....so they scurry on their way continuing what their day was set out to accomplish. A deer passes by and gives the turtle a glance of..."hey...did you notice that your upside down?" NO really, I was just checking out what the sky looks like from my rounded shell of a back!! I had read a book once by Sheila Walsh called "The Heartache That No One Sees." in it she had wrote about the church and how we all march along as one happy band until one of us falls...the others pause for a moment...but soon they continue to march on, without even looking back. How many times have we failed as the church? How many times has one of our very own found himself lying in the timber, upside, with only a rounded shell to hold him up and no way of turning himself back over to march along with the rest of the church. In second Corinthians Paul is writing to the church in Corinth....Paul of all people has spent his fair share of time in the timber lying flat on his back wandering how he got where he was and how would he ever get out of it... there was even a point in Pauls life where he said that he was torn about dying or living. To die would bring life with Christ but in life he would spend his time teaching from his back experiences leading people to Christ and giving eternal life to those that knew no life. Anyway....in second Corinthians Paul is explaining to the church that in this life we will have hardships, we will suffer, we will despair even of life. "Indeed, in our hearts we felt the sentence of death. But this happened that we might not rely on ourselves but God, who raises the dead. He has delivered us from such a deadly peril, and he will deliver us" 2 Corinthians 1:9-10. Though my days and many of yours may be like that turtle lying in the woods. God has a plan....and he may very well have let us roll over....stuck on our back just so we'll be forced to take the time to see and focus on His plan.

Happy Mother's Day Mom...

Its so hard to believe a month has passed already...and boy was I sure not thinking that Mother's Day would land on the exact day that mom passed. Guess we both should have had better planning on that part. I haven't blogged in awhile as I am still trying to wrap my hands around these new feelings and emotions that are going on in me. Feelings and emotions that are not familiar to me, that I don't know what to do with. Bill told me the other day that it was kind of like getting married for the first time...a place of emotions and feelings that we had not experienced until after we married and we grew to love and know one another. Or kind of like the first time they lay that new baby in your arms and all these emotions well up inside of you....will I be everything that this little being needs, can I love unconditionally, can I be what all of a sudden is expected of me as..."mom." I've lost alot of people in my life....grandparents and great-grandparents, but this new feeling of letting my mom go has been one that I have found to be such a painful journey. I didn't realize all my mom was too me until she is no longer here...mom, friend, confidant, that ear to hear all that troubles me in life. I find myself listening for the phone to ring only to find that it doesn't ring anymore with mom's voice on the other end. I don't like tears, I like to celebrate the good things of life and to work past those issues that I cannot change in life. So to me these emotions and feelings are something new to work through. I guess time will begin to heal the heart....but I do believe that God created in each of us a special place in our hearts for mom that is never meant to be filled with anything but mom. So this mothers day mom...is going to be rough. But as I continue to work through the emotions of it all...you are never far from my thoughts nor my heart.