The tears that no one sees....

We have been so blessed in our life. I look back at the marriage, the children and the grandchildren that Bill and I have been blessed with....but today it all seems so clouded by this dark cloud. I HATE THIS DISEASE. I hate what its done to me, I hate what its made me, I hate that it has taken so much of ME away.

So many of us have been through what I would call a "dark night of the soul," I experienced it probably about 7 years ago. It was a time in my life where God seemed so silent. I prayed, I dug deep into scripture, I listened to uplifting messages but it just seemed that God had pulled away his hand from me. It scared me, I didn't know if I had done something that had displeased him or why the silence all of a sudden. I thought I would die, I couldn't do this life without him and without the strength that he provided me and the words of knowledge that I needed always at the appropriate time.....then silence.

In Samuel, Saul found himself being imploded upon by the Philistines, he prayed but God did not answer, not in dreams, not in visions and not with a word. I know its in these times that it is a time for us to sit patiently and wait upon the Lord. But this isn't supposed to happen to me. I feel as though I'm trapped in a body that has totally gone haywire. It's tiring to wake up one day and feel utterly normal and function normally to sometimes hours to a day later completely unable to accomplish the smallest tasks. Tears come as there are days that my physical body and mental body is so tired of fighting and not knowing when this will ever end.

It's difficult being in crowds of people as the dizziness sets in and then the disorientation follows. None of us want others to see us fail, to see us in a state of frailty. I've found out how really small and insignificant we really are in such a vast world. I remember the day of my grandfathers funeral....as we pulled out in the funeral procession that the outside world was continuing on with life. How could this be? This man that I knew was a man of God, he served the Lord with all that he was, nothing in him was ever evil or un-christlike. How is it that everything didn't stand still at this moment....after all....it did for me.

On the day that I'm placed in the ground or any of us are placed in the ground....the pile of papers that need addressed on our desks, the phone calls that need returned and all the things that we see that have to be done......will soon be forgotten. But the time that I spend with my children and my grandchildren molding their lives and showing them how to live in Christ is all that will really matter.

It's been a down day today as I had to turn down doing the Women's Ministry once again this year. I can't even plan a haircut in advance as I don't know from moment to moment if I'll be upright or laid out begging God to end this misery. All I ask for is my health back, all I ask for is that from today forward I can get up daily and enter the world as everyone else enters....without wondering when its going to hit me. I think I'm having better days, but unlike before when I felt bad everyday....now I can feel great and have the wind knocked from my sail in a matter of minutes. When will this torture end. When can I begin to enjoy life again, when can I feel good again. When do I get to pick up the pieces of a terrible 2 years and turn this around to a story that God can use.

The best beauty comes form the worst pain.....

It's a battle that rages from day to day. Although I do feel like I am getting better when I look back at the past year....it still is so hard to not be what I used to be. I just got over having 3 days thatI believed where good days, Bill says "well you had better hours in the day, but not necessarily good days. Then Saturday evening at 5 pm it all started creeping back, I hate when it starts to come back on....because everytime I have a few good days I tend to get a little excited that maybe this is finally all over. So yesterday and today have been not so fun. Sleep has become a thing of the past.

I lay awake until 1 am if I'm lucky but mostly 3 am or Sunday morning I got in bed at 5 am, for Bill to be getting up. Kind of felt funny...that he was getting up and I was finally going to bed. Then when I do sleep the dreams are very vivid. I dreamt yesterday morning that my mom was sitting on the bed with me....she was saying something to me but for the life of me I can't recall what she said.

I know God has a story to tell through this. I know that everything that has happened in my life God has used to give glory to himself. I also know that throughout scripture everyone that God used had difficulties along the way. Character builders!! I am ready for that time. I'm ready to have the strength and energy and feel good enough to get back out there and be an inspiration to the gospel that I stand upon. I feel like I'm traped right now in a world that doesn't use my ministry gifts. I pray daily that God would remove this thorn and my ministry can resume.

Pain and hardship builds character.....but I'm wondering how much character building was I needing. Had pride stepped in the way of my ministry. Had my ability to accomplish everything on my own strength yielded God to take me to a level that my dependence was totally on his strength. What lesson am I to take from this and in what way Lord do you want me to use this. I ask for wisdom and discernment on what God's plan for my life is and I ask for strength to endure so that through this I may bring glory to him.

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.