'I won!" said our youngest after breaking the wishbone.
Wishing you a wonderful Thanksgiving! It has been quite a week and I am very grateful to be back at our friends' home for the holidays. My husband, daughters and mother-in-law came today and it is wonderful.
On Monday evening, I developed severe abdominal pain and spent the evening in the emergency room at Beaumont. I learned quickly that I had developed acute cholicystitis, a thickening of the gall bladder, and that I also had gall stones. By 6:00am, I was transferred to a room and Tuesday evening I had laproscopic surgery to remove my gall bladder. I was able to come home yesterday evening. A little extra healing this week, but so nice to have family, the best medicine of all.
A special thank you to my physician and surgeon and the wonderful nurses who took care me this week!
Sending much love and a warm hug your way! My family and I are so blessed by your friendship, kind words and prayers. Wishing you a wonderful holidays with many blessings! We have so much to be thankful for. Topping the list is you!
Recently, I had an episode where I lost much of my color vision for about an hour and a half. My eyes are very sensitive to bright light and floaters have been more noticeable. All prompted a trip to the eye institute this week, a clinic of residents.
The first doctor I met was just beginning his career. He was kind while he carefully gathered basic information. The second was a confident young man a bit farther in his training. When I told him of my diagnosis, he was quick to question.
"Why is your doctor so sure you have Lyme disease?"
"I have had nearly all of the symptoms. My IGM values have been elevated on several occasions. My ANA, which had been climbing for 3 years and reached a "sky-high" 2530 then returned to normal in 6 weeks with two rounds of antibiotics. That will not happen with Lupus. Of 40 Lupus tests, other than the high ANA, I've never had a positive Lupus test."
"Did you ever have the famous bull's eye rash?"
"It only presents in 50% of the cases."
"What symptoms do you currently have?"
"Daily headaches, always on both sides and always in my temples. Most recently, neuropathy and muscle wasting in arms and legs. I was losing the ability to walk."
"Well, do you have any cardiac issues?"
"Yes, I have a rare flattening of the T-wave and have developed mitral valve prolapse."
"Where were you diagnosed? Up north or down here?"
"By one of your physicians at Beaumont."
"Why did it take so long for you to get a diagnosis?"
Now, there's the big question, isn't it? Could it be that my early diagnosis of Lupus with it's treatment to severely compromise my immune system, also compromising my body's attempt to fight Lyme, played a factor?
At about this time, the first doctor stepped in, explaining that I was a biologist and nature photographer and had ample opportunity to be exposed to the disease. Bless you!
The second finally examined my eyes, then both left the room while I waited for the senior resident's examination. As I was waiting, I couldn't help but think that if I were to never see another doctor again, it would be just fine. I don't know why Lyme patients are treated this way? I am sure, had I said I had cancer, I would have been treated differently.
The senior resident came in. "How long have you been treated for lupus and is it well-controlled under medication?"
She's kidding, right?
"I was misdiagnosed for years with Lupus and my disease at that time was very poorly managed under medication."
This time doctor two stepped in to tell her that I did not have Lupus, but instead had Lyme disease.
The senior resident did a very nice job from that point and noted some unusual scarring on my cornea, usually caused by a medication that I've never taken. When I came home, I was not surprised to learn that Lyme will cause scarring of the cornea as the bacteria follow the trigeminal nerve to the optic nerve. I have had numbness and pain in the trigeminal nerve for years. As a dear friend said, "Is there a part of your body left that hasn't been affected by this miserable disease?"
Just one more piece that fits into the Lyme puzzle. So far, they've all fit, for those willing to look.
I will never know when I was exposed or if I have been repeatedly infected, but I've certainly had ample opportunity. As a child, I spent five summers from the ages of 5 and 10, camping for entire summers while my father worked on his Master's at Central Michigan University's Biological Station on Beaver Island. Covered from head to toe with black fly, no-see-um and mosquito bites, it was a fabulous childhood and a pivotal influence on my adult life.
Our family spent the summer of 1976 camping while my parents cleared land and built their home in a wooded lot adjacent to a field frequented by deer. I loved to walk with my dog and ride my pony through those fields while growing up.
The run-in with ticks on a hike in the Porcupine Mountains?
During the fall of 1983 at Michigan Technological University, I spent a night in the woods with fellow classmates as we helped with an off-road rally, the Press on Regardless. I awoke days later, running a fever and covered from head to toe with tiny spots. The campus physician was puzzled by my illness. My son, born a year and a half later was 9 1/2 weeks premature.
Add a another red flag to the summer of 1989. I was taking field classes at the University of Michigan Biological Station. A chipmunk was a continual visitor to our dorm room. Did it carry a tick into our room?
During that summer, our class of 15 students and three instructors headed to Sugar Island for an overnight field trip. The group stayed in one cabin and some of us opted to sleep overnight under the stars, myself included. I still remember the beautiful stars and my giggles as my sleeping bag kept sliding toward the lake shore. When our class was preparing to return to the Station, I became violently ill with what at the time I thought were flu or food poisoning symptoms. However, I was the only one who became ill. I now know that a summer "flu", especially if no one else becomes ill, is a very red flag.
Within a few years, I could hardly walk due to arthritis in my right knee, I had daily sore throats, frequent respiratory and UTI infections and lost my voice at the slightest cold. A walk-in collision with a school bus mirror resulted in post-concussion syndrome, two weeks of missed work and months of short-term memory loss. I was bothered for many months, nearly a year, when an itchy sore on the back of neck in my hairline refused to heal. Students would remind me to eat protein when I would become weak and pale. Ten summers were spent at the University of Michigan Biological Station in northern Michigan.
Our current home backs up to a beautiful field. Deer frequent our backyard. I am a biologist and a nature photographer. Much of my life has been spent surrounded by nature. It is a part of who I am and what I love. My husband sides with the MTU theory. The truth is that we can only be sure of one thing. I've had it for a long time.
It has been snowing and winter seems upon us. I had my weekly appointment today and all is going as expected. I've had a few issues with my eyesight that are a bit troubling and will visit an opthamologist tomorrow at Beaumont to determine what is happening.
My first solo venture to the doctor took a bit longer than anticipated. I stopped at Target to pick up a few things on the way home and returned to a car with flat rear tire in the parking lot.Ugh! I am not exactly in a physical position to change a tire these days so went back inside and bought a can of the inflatable sealant. I must say that it worked beautifully and made it possible for me to travel down the road to a tire store. I am going to go back and purchase a second can and keep it in the trunk. I highly recommend it and feel very fortunate to not to have been stuck on the side of the highway today.
Each morning, when I look at myself in the mirror, I am giving new meaning to the phrase, "A Whiter Shade of Pale." In a nutshell, I'm experiencing many of the symptoms I've experienced over the years. It's quite a flashback and comforting to know that this time around, I don't need to be as frightened of what's lurking around the corner. This is a very good sign the treatment is working. These are not side-effects of the medication. They are the symptoms experienced when Lyme bacteria die.
According to my doctor, who's very pleased with my body's response, "We're killing a lot of Borrelia."
A dear friend left the most wonderful message on my phone Wednesday morning.
"It's a new day! You're beginning treatment and we have a new President!"
Our friend, photographer Pete Souza, was in Grant Park on election night and has included an incredibly moving slideshow at his web site, http://www.petesouza.com/. Simply wonderful, Pete! Thank you!
On a more personal note, my PICC line was placed in my arm on Wednesday morning and I began my first treatment. On Thursday, we were trained by a home health care nurse to administer the infusions of antibiotics on my own. The i.v. is a self-administering device that does not need to be hung from a pole. I can tuck it in a bag or pocket and move around. The infusion takes about an hour and I infuse twice daily.
I am experiencing some aches and pains, fatigue and mild flu-like symptoms, all normal and am adjusting well. I've added some friendly flora to aid in digestion, hopefully warding off one of the side-effects.
A special thank you to all who've helped make the week a little easier for my family and me.
On Thursday, after years of illness, I was diagnosed with Lyme disease. Previous diagnoses included Lupus, mixed connective tissue disease, Sjogren's syndrome, Scleroderma, Raynaud's syndrome, posterior orthostatic tachycardia syndrome, migraines, neuropathy, hypermobility syndrome, TMJ, carpal tunnel syndrome, ulnar nerve compression, chronic fatigue syndrome, fibromyalgia, antiphospholipid syndrome, intermittent hearing loss, arthritis, Candidiasis, hypoglycemia, degenerative disk disease, Epstein Barr and human parvo viruses, median arcuate ligament compression syndrome, eschemia, Bell's palsy, chronic sinus, ear and urinary tract infections, trigeminal nerve involvement, joint pain, costalchondritis, mild foot drop and possible vasculitis of the small blood vessels. M.S. was on the horizon. At the time of my diagnosis, I had experienced all but four of the nearly 75 symptoms listed on the CanLyme web site, a Canadian source.
There is an excellent essay on Lyme disease written by John D. Bleiweiss, M.D. in April, 1994 I came across a few days ago and found interesting. I was surprised to read "a sudden acceleration of encephalopathy, headache and dizziness, thought of as putative post-concussion syndrome, can be evoked by head trauma." I experienced a very similar situation in 1991.
I was once told by a physician, "We're like the bunch of blind men in a room with an elephant." My internist was turning to philosophy because he is a compassionate person and it was the best he could offer. I am so grateful for my training as a biologist and scientist and for my friends and family who have helped with me throughout this. I am thankful for the compassionate doctors who tried to make a difference. I am grateful to my neighbor, who, a year and half ago said, "Kim, the only time I had a headache like that was when I had manifestations of Lyme disease."
I am grateful to my hairstylist, diagnosed with Lyme, who would know my symptoms before I would walk through the door. We joked that either she had Lupus or I had Lyme because we certainly had the same thing.
I am grateful to my friends at physical therapy. Thank you for making a difference!
I am grateful to my naturopath who saved my life twice. I am also grateful that I finally met a doctor who's experience allowed him to make a diagnosis where so many have failed. He is finding things others have missed because he knows what to look for.
I will be receiving intensive therapy during the next six weeks and am so grateful to those who have done so much to help us through this. I take comfort knowing that we are finally treating the underlying problem. It will make being away from my daughters a bit easier.
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