The Good, Bad, Ugly and the Crazy!

The last time I blogged, I promised to give more details about my recovery process over the last year. So, here it is...the good, bad, ugly and the CRAZY! As you will see, I had to go through the bad, ugly and crazy to get to the good!

The "Bad"...
As I mentioned, the summer was a blurr, and before I knew it there were signs of fall. I was feeling a bit stronger and seeing some improvements...I was hopeful! However, it was the case of "two steps forward and three steps back." Things really went "Bad!" By late September, I started having severe weakness, fevers, flu-like symptoms, cardiac symptoms and gallbladdar issues. In addition, insomnia and night sweats were at an all time HORRIBLE! The Lunesta I was taking no longer worked and I was only sleeping 2-3 hours a night which was interrupted by drenching night sweats. I was in a vicous cycle. The less I slept the sicker I felt, and the sicker I felt, the less I slept. On several occasions, I went three days in a row without sleep. I felt like I was in a nightmare!

Then, a new symptom emerged...a toothache. Honestly, I thought, "This is the VERY LEAST of my worries!" I had a root canal on one of my front teeth (No.9) in May, 2007, (interestingly enough, this is about the time my health started to really decline.), and it was this same tooth that was hurting. At first, I ignored it...but toothaches don't just go away, and eventually, it had my full attention! After many, many doctor appointments and opinions, it was determined that there was no way to save my beloved front tooth! Infact, an oral surgeon pulled my front tooth "on the spot"...to put me out of my misery...and with my compromised immune system and cardiac symptoms he was concerned about my risk for endocarditis.

The "Ugly"...
Because of the emergent tooth extraction, I was left WITHOUT a front tooth, for TEN days, until my temporary tooth could be made. It has been said, "Vanity is cheap, and the first thing to go when you are sick!" It is true! All I cared about was getting well...I would have let the dr. pull every tooth in my head if I knew it would make me better! Oh well, I had one consolation...it was the Halloween season, and I was the perfect model for the jack-o-latern we carved!

The tooth extraction alleviated the tooth ache...and I had hoped that getting rid of an infected tooth would help my other symptoms...but my other symptoms were not improving. Infact, things were getting worse. The oral surgeon prescribed penicillin after the extraction, and it was causing pain in my jaws... and my teeth were horribly discoloring! My dentist was stumped! She had never seen penicillin discolor teeth in this way! I knew there had to be more to this picture...but what? Why was I having jaw pain? No one seemed to know.

Then...I remembered one of the books I read over the summer. It addressed the fact that people with compromised immune systems can develop necrotic bone/infections/cysts/osteomylitis in the cavitations where teeth have been extracted (such as wisdom teeth)or compromised. I remember reading this and thinking, "This is totally irrelevant to me. I have one surface cavity...I don't have any dental issues!" Now, I was beginning to wonder if this was an important part of my recovery. Could I have infection in my jaws? During my Reno treatment, I developed strange brown demarcation lines on some of my molars which none of the doctors had ever seen before. They didn't seemed concerned....so, I just ignored it. Now, I was wondering if the treatment I received in Reno was "going after" infection in my jaws. Was this was an important clue, sign...my body trying to tell me something?

The "CRAZY"...
With all of this going on, I was feeling desperate for a local doctor who could help me put all the pieces of this crazy puzzle together. Well, within days of becoming toothless, my prayer was answered. I was accepted as a patient by Dr. Singleton, a highly regarded doctor who wrote the book, "The Lyme Solution." During the appointment, I explained my dental/jaw concerns...I still had not received my temporary tooth so he could easily SEE the evidence for himself! I asked him about the possibility of a jaw infection. He thought is was plausible, and he referred me to a specialist. Dr. Singleton summed up my visit by saying, "You are one of the more complicated cases of lyme I have ever seen." GREAT!....not a distinction I wanted to hear!

I immediately saw the specialist, and he ordered a spiral CT scan of my jaws. After reviewing the scan, he diagnosed me with osteomylitis where my wisdom teeth were extracted yrs. ago, and at the site of my front tooth. I was scheduled for two surgery dates to remove the infection. I kept thinking..."Okay, this is the CRAZY!" Who would of ever imagined I had this huge infection brewing? I am so thankful that God put the right book in my hands so I would know the questions to ask and have some idea of what was happening to me. I am also thankful that He gave me the right doctor to give me the appropriate referral...exactly when I needed it!!

On November 10, 2008, I had my first surgery to remove necrotic bone in my right lower jaw. I learned to "drink" my meals....thank God for blenders. Have you ever tried to drink pureed food with gauze in your mouth? Not so great! However, I slowly began to see significant improvement in my symptoms. I knew I was on the right track!

On January 6, 2009, I had my second surgery, and they removed necrotic bone from my left bottom jaw as well as infection/cysts from the site where my front tooth was extracted. The surgeon said he was surprised at the amount of infection he had to remove. Somehow, I was NOT surprised at all!!

The "Good"...
In the midst of my surgeries, I began seeing a second lyme specialist, Dr. Zackrison (affectionately known as Dr. "Z"). Again, the timing was perfect and her experience and expertise with this disease have been exactly what I need. She told me jaw/teeth/head & neck infections are some of the more difficult to treat with lyme patients. She prescribed IV therapy every 2-3 weeks with other meds and herbs, and I am definitely seeing improvement. I still have some chronic head & neck issues (a tonsilectomy may be in my future), fatigue and insomnia. However, my discolored teeth are gradually turning back to normal, and the color of my real front tooth finally matches the color of my temporary tooth. (Doesn't take much to make me happy!) My sleep isn't perfect but I do sleep, the night sweats are significantly improved, and the flu-like symptoms are sooo much better! Dr. Z is hopeful that within a year I can possibly "clear" the lyme!!!!

In a "nutshell," I have greatly improved. Infact, I feel so good...I have to be careful to not overdo it...because it will catch up with me. I am just thankful to be "mom" again, participate in family activities, work one day a week, attend church and volunteer at the children's school. Not that success is measured by "what" I can do, but it shows how much stronger my body is compared to one year ago. I am also thankful for all I have learned!! Dealing with this disease has radically changed how I view life!! Believe it or not...it has been worth every step of the the bad, ugly and crazy to get to the good! How very grateful I am for the "good."

Until next time...love to all!

Ronda

Breaking the Silence

Wow! It has been a long time since I sat down to write. Has it really been seventeen months since I posted "Going Green?" The silence has truly been a reflection of my life these many months. My intention was to come home from treatment and return to the hustle and bustle of "life as normal." However, life has been far from normal. Instead, I feel like I have been turned inside out. It has been a time of waiting, listening, learning, and digging deep. In the midst of it all, I have learned many things about myself, my faith and how difficult it is to regain one's health when fighting chronic lyme disease. There is SO MUCH I want to write about in this blog, but it would be overwhelming to write or read. For now, I will update you on my medical progress, and reserve all of the many details and "lessons" I am learning for future entries.

My treatment in Reno was very helpful. The treatment was an intense "jump-start" toward recovery, and a HUGE part of reversing the tide. I am not sure where I would be had I not received those weeks of treatment. After treatment, the fibromyalgia pain and numbness were gone, and I was extremely thankful!! It was so encouraging to see improvement and signs of hope. However, before I left Reno, they told me, "You are much improved, but you are still fighting lyme disease"..... and they were right. Although I had seen progress, within days of returning home, I was struggling with flu-like symptoms, lymphnode pain, fatigue, headaches, stomach issues, night sweats, insomnia and extreme weakness. The entire summer feels like a blurr. I could hardly get out of bed on most days. It took everything I had just to prepare meals. It became very clear...this was going to be a longer road than I had expected.

As I struggled with these symptoms, I began searching for a local doctor and discovered two things: most lyme doctors were not taking new patients and none of the doctors (and many treatments) were not covered by insurance. I wasn't sure where to turn. I was having difficulty finding a lyme specialist, and feeling pretty desperate. However, God (who specializes in the impossible) was there and in retrospect, I can see how He has guided me each step of the way. In the midst of uncertainty, I am so thankful I have had a place to turn. A place to trust when I didn't know the way.

While I waited and searched for a local doctor, I continued my detox regimen of juicing, colonics and sauna. In addition, I continued acupuncture, stayed in close contact with Dr. Fong (through phone consultations) and gave myself injections prescribed by Dr. Fong's practice. I also tried Hyperbaric Oxygen Therapy (HBOT) a few times. (It is effective against lyme....but it is cost prohibitive and not covered by insurance...sound familiar?) Oh yea, and I rested, and rested some more. I became one with my bed.... I was so weak; it was all I could do. While I rested, to keep myself amused, I read all the books I could find on lyme and the immune system. I learned so much. Some of the books I read have proven to be crucial in helping me navigate through this crazy thing called, "recovery."

Last fall, I was finally able to begin seeing several different local doctors who continued to help me put the pieces of the puzzle together, and I am feeling so much better these days. I have to say, it did get worse before it got better, and I am not completely back to "normal." However, I am able to take care of my family, work one day a week and feel strong enough to participate in family activities. It is wonderful!!!

I will write about the details of the last year next time. Now that I am feeling better, I plan to write much more often. I feel like I still have a story tell, and so much to share....

For now, I want to close by thanking everyone who has helped me get through these difficult months. We have had help with everything from childcare, meals, transportation to dr. appts., house cleaning, shoveling snow, carpooling to school and activities to financial help. I cannot say enough "thank yous" to equate the love and support we have received! I specifically want to say, "thank you," to Susan Beckworth, Laurel Jenkins, Amy Little, Angel Voggenreiter, Kathy Drago, Debbie Tritle and Julie Villa for organizing a silent auction, as well as other events (book sale, creative memories party, ect..) to raise money to help offset our expenses. It was a tremendous amount of work! I was so touched by your willingness to give of your time and energy!!! THANK YOU!! Also, thank you to all of the donors who donated your services, items, trips and food to be auctioned! Lastly, thank you to everyone who attended the auction as well as the other events! I am truly amazed!

As if all of this was not enough....there is more! I have the most incredible friends in the world! These same ladies also sent letters to their family and friends and shared my story. The response was an outpouring of prayer and love! During those dark days of summer, day after day, I was encouraged as I opened cards and received encouragement and financial gifts from so many friends, neighbors and people across the country whom I have never met! It was a daily dose of hope! I was so humbled that you would take the time to write and encourage me. Words truly cannot describe how you ministered to me in my time of need. Those cards have been read over and over again. THANK YOU from the bottom of my heart for being an instrument of love, hope and encouragement.

Until next time...

Ronda