Saturday, May 22, 2010


Kind of ironic that I had to wait to post this message. I thought about two months ago that it would be kind of neat to write a post about waiting. After all, haven't us all at some point or another had to exercise the skill of waiting? Well I couldn't think of exactly what I wanted to write so I have written bits and pieces of the last few months.

Ten years ago (on May 19th), I got a phone call. After that moment, I began waiting. I had to wait for my new husband to drive home from work and then wait for what seemed like DAYS to get there, but honestly it probably only took 60 minutes (don't tell the cops because I think it normally took about 80 to 90 minutes to get there). Then I got there and saw tears streaming down my stoic Grandfather's face. Everyone was waiting. Everyone was holding their breaths. Secretly, I was praying that He would wait. Wait to take her home. I felt she wasn't done yet. She hadn't taught me what I needed to learn. Instead, I just had to wait. Wait to hear that my Granny, my very special friend in life, had passed away.

On the other end of the spectrum of life, I have friends who waited for a child. They waited for God to provide them with a child they would love. Each friend's case was different, but it was all the same. They desired to have a child to love that they could call their own. Some of those friends are still waiting for something to happen, while others are newly pregnant and while another is finally taking that ride of motherhood bicycling with their recently turned one year old child. They waited for the good to outweigh the bad. You can find many blogs on women that are showcasing the pain of their wait and the desires of their hearts.

Then there is kind of a daily wait. A wait to find out answers. Someone has a question and the answer isn't given. Each day that passes waiting on the answer causes anxiety and stress. For me that question was, "What is causing me to be so sick?" For me the answer came 12 years after the first question was asked. I had to wait for an answer. I had to be patient. From 1995 to 2007, I just waited. Some years, I was actively looking for an answer. I went from doctor to doctor trying to find out what was causing my sudden increase of symptoms. While other years, I just tried my best to ignore the screaming question. "What is wrong with me?"

For a while, I let the doctors placate me. I listened to every word and followed every advice to the letter. Here is just a sampling of what I went through over the 12 years before diagnosis. I have some dates for specific events because I do have some old receipts and diagnostic results. This is how I can piece together a time line.

Neurologist 1: Epilepsy Medicine (August 1995 to November 1995)
Neurologist 2: (November 95) Go off the Epilepsy Medicine , use talk therapy (I was released when the 2nd one wisened up and said, "I don't know what is wrong with you, but it ain't anxiety. You handle life very well) and reduce stress. Because of the 2nd Neurologist not listening, I decided to not really see any physicians for a while. Occasionally I'd wind up in the facility on college campus, but he's prescribe for symptoms and send me on my way. (talk therapy was from November 95 to sometime in 96)

Urgent Care Doctor 1 : (sometime in 2000) It's simple, "You're anorexic." (I didn't listen to him. He was an idiot)

Nurse Practitioner 1: (sometime in 2000)Thyroid Disorder (let's test it three times to make sure)
Nurse Practitioner 1: (sometime in 2000)It's Anxiety (use Antidepressants, Anti-anxiety and reduce stress).
Nurse Practitioner 1: (later possibly in 2002) Use Talk Therapy (are you kidding me, again?)
Nurse Practitioner 1: (it's hard to remember I think it was 2003) Possible Breast Cancer

Ultrasound Tech 1: "Ooooh" when she finally saw the lump.

Surgeon 1: It was bigger than I thought (scares the crap out of me. I was convinced I had cancer). She removed both my breast lump & birth mark and after a few weeks deemed that neither was cancer.

Urgent Care 2: (April of 2005) Allergies to mold & dust mites. That's what is causing all of your sinus infections. I thought my wait was over.

Hospital 1: (February 14, 2006) Ignores symptoms of gallbladder problem and gives me an IV of ativan and sends me on my way.

Couple of weeks later Hospital 2 performs emergency Gallbladder surgery on March 28 2006. I thought my wait was over. I thought I had my answer, but unfortunately I was completely wrong.

I went back to the Surgeon for my post op on April 3rd and things were healing nicely. Then all the sudden my incisions began to look really gross and I had pain as if it were the day of surgery. I went to my regular physician who performed blood work and sent me back to the surgeon who then sent me back for an overnight stay at the hospital. They said that I had some sort of infection and gave me IV antibiotics. I had to wait to feel better. (This was on April 6, 2006)

Urgent Care 2: (April 26, 2006) Gave me a diagnosis of Lyme Disease after a tick bite. Prescribe me 2 weeks of antibiotics with instructions to wait for the test results. They called on May 2, 2006 to tell me that my tests were negative. However by May 17th, I was falling asleep at the wheel and it hurt to walk. My knees were swollen and my tick bite was inflamed. Doctor gave me 2 more weeks of antibiotics saying my test results were negative, but they expected that. I thought my wait was over. (for those that are interested: First Antibiotic was Doxycycline 100 mg 2 times a day for 10 days. Second one was Amoxicillin 500 mg 3 times a day for 10 days).

Nurse Practitioner 1: By the end of June 2006, my NP had ordered Rheumatoid Arthritis test, Antinuclear Antibodies Direct test and another Lyme test. She told me that Lyme Disease can be tricky to treat, but since I was given 4 weeks of antibiotics pretty much straight that my case should be "cured." However, I had a serious ear infection that could be causing my symptoms. Just to be on the "safe" side for residuals of Lyme & to cure the ear infection, she prescribed me four weeks of antibiotics. I thought my wait was over.

Nurse Practitioner 1: Now I have been having symptoms since the tick bite, but my NP was looking at other possibilities. By the end of September she wanted to give me some anti-inflammatory medication for your joint pain. This should help. I wound up going back because the diarrhea was so bad that I couldn't stay on it. Plus it didn't help with my joint pain in any way. She gave me a sample of one and it worked better so she prescribed it. The problem was my insurance wouldn't pay for it until I had tried 5 other alternatives first! What a pain, but I thought my wait was over. I got the note from insurance denying Celebrex the 6th of October in 2006. My NP was on top of things and pushed this through very quickly. I tried the alternatives in a very short time and by October 13th they approved the Celebrex.

Nurse Practitioner 1: When I wasn't much better in a few weeks, she said she had done everything she could do for my possible Rheumtoid Arthritis. She sent me to a

Rheumtologist: (November 2006) It was at this point that I stopped waiting patiently and started waiting actively. We had questions for this lady. Questions we hoped she could answer. Our question was, "How come antibiotics make the symptoms go away?" Her answer, "That shouldn't happen." Her other answer was to keep on the Celebrex and to wait for my blood tests. She was ruling out several conditions and one was possible Lupus. I went back and my blood tests were normal. She told me to continue the Celebrex and start Neurontin for my nerve pain and come back in six weeks. We were tired of waiting. We didn't go back.

Nurse Practitioner 1: I was beginning to lose hope in her even though she had taken me through years of stuff. I mentioned one symptom and a light lit up in her eyes. She had a feeling she knew what was wrong with me. She just needed an MRI to confirm and she decided if it were that, I would need a Neurologist so she set me up an appointment.

MRI Tech: Asked me to stop twitching while having an MRI on my brain. The problem was that was one of the reasons I was there was to learn why I was twitching. How could I stop twitching when that's what we were trying to diagnose? IF I could turn it on and off like a switch, then I wouldn't need an MRI.

Neurologist 3: Reported that he saw damage on my MRI. He said he wasn't sure if it was due to an illness or past trauma (could be past seizures I was having or when I hit my head at college).

Neurologist 4: Said that the MRI was remarkedbly normal in every way. This is when MY lightbulb went off. How could one doctor say the MRI was normal and the other say it was not? Neurologist went over my history and decided to perform a couple of tests right then. An EEG to rule out seizures, and a couple of really painful tests. I was thankful that I didn't have time to research the tests or have to wait for them because I really think I would have chickened out. In the mean time, increase the dosage of Neurontin and he'd see me after the tests were completed.

EEG Tech: What exactly are we looking for (after 20 minutes)? I explained the situation and they continued to look. They really wanted me to sleep, but who can sleep with all those electrodes on?

Painful Techs: One shocked the mess out of my legs and the other stuck needles in my legs. Yeah let's just say I'm glad I didn't have to wait. The techs weren't supposed to say anything, but they did. They told me not to worry.

Neurologist 4: Told me that all my tests were normal. I didn't have MS, Brain Tumors, seizures, ALS or any other thing they were testing for. He wanted me to continue the medication to wait to see if my symptoms would improve. I was done waiting.

Lyme Guru 1:March 1, 2007: After 12 years of waiting to hear the words, "You have Lyme Disease." made me go over the moon. I had no idea what I was in for. IV's and PICC Lines and supplements and controversy.

That was in 2007. Here we are in 2010 and I'm still waiting. Waiting for the other foot to drop. I have been pretty well the last year or so. I've been told that stressful events can cause relapse. I have gone through one thing after another this last year. My friend died, my school closed, new school with new friends & students, my grandfather's ill health, going back to a 40 hour work week, my grandfather's passing, my Uncle having heart surgery and the most recent stressful event that had me see my life flash before my eyes.

I was driving home from my 8 hour day at work (woo hooo I'm well enough to work a full 8 hour day!). I stopped off at an exit to get some gas since I knew I wouldn't make it home otherwise. While I was at a complete stop (waiting none-the-less), my car had sudden acceleration. It took off on it's own. My life flashed before my eyes. Instinct took over and right before I was going to throw the car into Neutral and grab my phone for 911, the brakes decided they were going to work and my car slowly came to a stop.

I'm fine, the car is fine, people that almost slammed into me that were honking and cursing at me in their convertible as they flew past ... well I hope they are fine. The car will be going into the dealership on Tuesday. They say that I only have the "mat recall" Toyota model, but it was blatantly obvious to me that my car had a mind of it's own on Friday. So I will be waiting to drive my beloved car until they do something about it.

I wonder if Toyota will give my husband the run around like the Doctors gave me the run around. I don't have 12 years to wait for my car to be diagnosed.

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