Bear with me folks, for this is my first venture into the vast ocean of journalism, unless, of course, emails, resumes and chat sessions qualify. Does a blog really count as real journalism? We'll see, I suppose. Thank you for stopping by. Constructive comments are welcome.
I gain a great portion of my strength and inspiration principally from my religious and spiritual beliefs, but there is one individual that provides me with a positive attitude leaps and bounds beyond others. That is my dear Bets, as I've known her for the past 30 plus years. It is her that I dedicate these records of my journey to. She is the bravest, most optimistic person I know. She faces life's challenges with a grace like I've never seen. My brothers and Father have given me substantial backing. My sister in law, Toni, has supported me in many unspoken ways, as she does all of our family. Judi, a kind and giving neighbor, has literally been by my side almost every step of the way. She has been a friend, a driver, a confidant, and a true partner in crime on our weekly escapades into the world of Judi and Craig's great adventures. My buddy Kimmie has been my wheels to church and grocery stores and pretty much anything I need her for in addition to caring for her own Mother and working full time several weeks. Thanks to all of you for everything you've done and continue to do. I am blessed...
The genesis of this journey has not been defined, nor will it be. In March of 2009 I began to experience numbness in my toes, then my feet and ankles. After a couple of months of telling myself it would go away and the sensations not cooperating with my thought process, I bought short term insurance (I'm a 99er) and scheduled an appointment with my doctor. My line of thinking said we'd figure out the cause and treat it and move on. His thoughts were that there was nerve damage and sent me to be tested. He also had blood work done, but no testing for Lyme bacteria. The tests confirmed that I had nerve damage and so I was referred to a neurologist for further research.
She ran a series of physical tests over the span of about 10 or 15 minutes, asked a few questions and basically confirmed that I had nerve damage in my legs and also felt there was evidence of damage spreading to my arms and hands. At that point I didn't feel any evidence of such. I asked if the symptoms I was dealing with might be MS, ALS, Lyme, etc. The suggestions were quickly dismissed. No definitive diagnosis or treatment, just exercise and curb my appetite for alcohol. She prescribed Neurontin/Gabapentin (generic) to ease the pain. The drug is used widely for a broad span of things such as epilepsy, fybromyalgia, etc. I joined a gym and quit drinking for a couple of months altogether. It seemed to be working. Then the pain and numbness came back and began to intensify. It is now late summer 2009, August I suppose. Another symptom had also surfaced on occasion, balance. The neurologist increased my medication dosage from 100mg 3 times daily, to 300mg 3 times per day. Hmmm, still no diagnosis or treatment of any kind.
Next came the joy of finding out that the insurance company came to the conclusion that mine was a pre-existing condition and refused to pay any of the bills I had accrued. Interesting since I had never experienced any of the sensations, never been examined or tested for the conditions previously. How convenient. Shame on me for trying to have wellness in my life! What was I thinking?
With no employment (I'm a 99er) and no insurance I had little choice but to put my faith to work and hope and pray for the best, but that just didn't work. My condition deteriorated substantially over the next year. By Spring 2010 my motor skills were severely impaired. Arms, hands and fingers, neck, legs, feet, everything ached and became very stiff. I had to have assistance to get out of bed, stand up from a chair or sofa, getting in and out of cars, etc. I used a golf club as a cane around the house to keep from falling and to help me up. Stairs were a challenge, always having to use the banister or wall for help. By late summer I couldn't stand the pain and called my neurologist for an appointment. 6 weeks until she could see me, all backed up, emergency or not. Take a ticket and get in the back of the line. All jammed up all day, every day until December. She doubled my dosage again, now up to 600mg 3 times a day, assured me it's safe, which research I've conducted via Dr. Internet suggests that it is OK, in fact.
Well, September rolls around and my ticket to ride is ready to be stamped. In the mean time much of the research I did regarding my symptoms pointed to Lyme disease, so I put it at the top of my list of questions for the doctor. I was amazed when I arrived at her office that I was the only one in the waiting room. I guess everybody else canceled that day. Finally, I got an audience with the neurologist of the day. We sat in her office and I described everything I was dealing with, pain, balance, numbness, lack of mobility, on and on, blah, blah, blah. When I brought up my thoughts about Lyme disease (as I had over a year previously) she quickly agreed that I seemed to be on the right track. I mentioned that she dismissed that thought before and she conveniently didn't recall my suggestion. My, my, I must have dreamed that up. Boosted my meds up to 2400mg. per day, up just a bit from the 300mg per day I started out with. It still didn't do much to alleviate the pain or other maladies that I felt. I requested a prescription to have a test for Lyme and scheduled the test after calling 3 various labs to verify the cost of the test since I would be paying out of pocket. By this time I had been denied public health care (Medicaid) because I was told I made too much money on unemployment. It was irrelevant that the UC didn't come close to paying all my household bills and financial obligations.
My tests came back positive for Lyme disease in late September. I was immediately scheduled to see an infectious disease specialist. When asked if I wanted to wait to see the doctor or come in the next day and meet with the nurse practitioner I said it's a "no brainer." I typically prefer to see the CRNP because they're usually the ones taking the new courses, attending conferences and learning what's new out there, not to mention the added level of compassion they seem to deliver. I couldn't be happier with what I've found with my caretaker and the support staff throughout the facility. I have never once felt rushed or put off. The experience has been very encouraging for my road to recovery. She put me on an oral antibiotic, Doxycycline 100mg. twice a day for 2 months. What a difference it made. My leg strength came back, my arms have regained a substantial improvement in mobility and my neck has improved quite a bit, also. My fingers and toes still are numb and have limited movement, but it is better than it was.
Last week I met with my caretaker to discuss all the things I might expect going forward, beginning with my PICC line insertion tomorrow and the first dosage of the Rocephin IV, to the procedures I'll follow to self administer the drug, cleaning of the area, showering with the apparatus, etc. When I asked about possible side effects she commented probably nothing more than soreness at the port, nausea, vomiting, diarrhea, nothing to worry about! I told her I was happy she'd volunteered to take care of me and clean up the mess! She laughed and said I probably wouldn't experience any of those to any substantial degree if at all because of no side effects from the Doxycycline. I remarked that I would hold her to it. She also suggested eating pro-biotic yogurt as a means of replenishing the good bacteria killed by the Rocephin for my digestive system.
I guess it's time for me to climb up on the diving platform and go for the plunge. I've waded in the shallow end long enough now, so I'm ready to blast in with a perfect jack knife. They make the biggest splashes, much larger than a cannonball.
The updates will be brief from here on out unless something goofy happens. Good Karma, thoughts, prayers, attaboys, etc. are all welcome. Beware of the ticks. Their bite is worse than their bark...
Tick Bait
