We're settling in for another winter storm and we're enjoying the holidays very much!
I saw my optometrist today. The corneal scarring is limited to the left eye, does not block my vision and is now faint. Hopefully, by the end of my treatment, it will be gone forever. Muscle weakness responsible for my incidences of double vision, difficulty changing focus and queasiness will also, hopefully, improve with time. He was so happy that we finally have some answers for my health! Me, too! : )
This morning a friend of mine "kidnapped" me for what I would soon learn was "Kim Day." My friends had been planning a day to spoil me. Our first stop was the hair salon for a much needed cut and style. I was pampered with a pedicure, which felt glorious on my itchy skin, then on to some delicious soup at one of my favorite restaurants, Julienne Tomatoes and shopping at a local sports store where I was treated to new exercise pants and shoes for physical therapy, a wonderfully cozy jacket that is perfect for warding off my occasional chills, and the cutest pair of boots to safely walk around outside in. When I tried to learn who to thank, I was just told that a lot of people were a part of it. So I am sending my love and a huge thank you for the wonderful welcome home present many of you sent my way! Again, wishing you your best holiday ever!
My picc line came out today. Hooray! It feels great to have it out and to finally be home! My youngest kept asking me if I would be home for Christmas? The answer is yes. Wishing you a wonderful holidays!
In 2005, rheumatologists believed I had Lupus because my ANA was so high. The treatment severely compromised my immune system with three drugs, CellCept, Plaquenil and Prednisone. My condition did not improve. It grew worse.
A year and a half ago, I began to question Lyme disease. The symptoms matched. I dug through my bloodwork and of 40 tests, I had never had a positive Lupus test. The protein in my spinal fluid was elevated in three spinal taps with a small number of white blood cells in each. I had a red lacy rash on my skin. I was to later learn I had human parvovirus and Epstein-Barr virus in my system.
My ANA continued to climb. I developed a nasty respiratory infection, made worse by my compromised immune system. Two antibiotic treatments resulted in a normal ANA for the first time in years. I came across a study in the Journal of Rheumatology written by a pediatric rheumatologist who warned rheumatologists to beware of patients with human parvovirus and Lyme disease. Their bloodwork presents as systemic Lupus. A plausible explanation for my ANA.
Though my symptoms were atypical for Lupus, doctors were hesitant to look for other explanations. I had two negative Lyme tests, but later learned that it would have been virtually impossible, due to my compromised immune system, to have a positive Lyme test.
Fortunately, I met an infectious disease specialist who understood the disease. I have been responding well to treatment and no longer take any medications that compromise my immune system. My bloodwork from last week yielded a positive Lyme test!!!
There is a flaw in the treatment of Lupus and Lyme. If the assumption of Lupus is made before ruling out Lyme disease, the treatment of one compromises both the doctor's ability to diagnose, as well as the patient's ability to fight the disease. It is the making of a perfect storm.
The nerves in my right arm are beginning to function again and as a result, muscle is returning to parts of my right hand! The change is quite striking! I can hardly wait to see my physical therapists. I know they'll be as thrilled as I am. I continue to gain more control of my legs, as well.
My weekly appointment went very well. Symptoms continue to be consistant with my diagnosis and my physician is very pleased with my progress. Now that the Lyme has been knocked down, we did extra bloodwork today, to survey viruses and co-infections. This will give my doctor an excellent idea of what is needed for my next phase of treatment.
Hopefully, my picc line will be able to come out in ten days and I will be ready to begin my next phase.
We have the most wonderful friends and family in the world! Thank you!!! Your gifts, when times are so hard for everyone, are so very much appreciated. I can't even begin to find the words that express our endless gratitude and love for all of you! Your gifts will help with gas, medical bills, food, a donation to the The Lyme Disease Foundation and Santa. Thank you!!!
This song by The Goo Goo dolls has long been on my mind.
"And you ask me what I want this year and I'll try to make it kind and clear just a chance that maybe we'll find better days."
As my dream for better days becomes more and more a reality, we are so very grateful for all of you this holiday season!
I am 2/3 of the way through the i.v. therapy! Though I will continue oral antibiotics for several months, the progress I have made in my first month is very exciting. I woke up today feeling like I am getting a second chance at life. Each day, there is a little more improvement.
The face that looks back at me in the morning looks more and more like my old self. The swelling on the left side of my face, part of my existence for two years, is subsiding. The deep circles under my eyes are not as dark and some of my color is returning. If the lesions on my cornea are caused by Lyme disease, there is a good chance they'll disappear with treatment. Just one more symptom that confirms the urgency of my current treatment. My thinking is clearer.
My walking is improving. It was becoming very difficult to walk fluidly. I was losing control of the function of my legs. I am so excited to tell you that I am walking so much smoother, now. Strangers no longer look at me with a concerned look, wondering if they should offer help or cross to the other side of the street, when I go to the post office. : ) Those darn doors are still pretty heavy to open, but in time...
My headaches, which I've had non-stop since 2005 seem to be abating!
Words can not express my deep sense of gratitude for the care I am receiving.
'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.
If you love handmade treasures that inspire the imaginations, touch the senses, warm the heart and foster creativity, you will fall in love with the NaturalKids team on Etsy. My favorite toys for 2008!
Forty of the artists have combined in a joint advertising adventure, forming the NaturalKids Store. What a fabulous way to shop! Items are environmentally friendly, as well, and you may make some new friends along the way. Shopping will never be any better than this. : )
For more great treasures, please search NaturalKids on Etsy! You'll be so glad you did.
If you are discovering Etsy for the first time, you're in for a treat! Take the pledge to buy handmade and enjoy the fabulous selections from around the world.
The leaves are gorgeous; reds, oranges, and yellows. The air is crisp and nights are getting colder. Pine cones, leaves and acorns are falling to the ground. The pumpkins have arrived. The geese are on their way. We found our first Woolly Bear caterpillar today. If its colors are correct, we're in for a long winter. We're trying to make the most of these magical Indian Summer days. So beautiful!!! Wishing you a wonderful, magical fall!
Our youngest has been having a difficult time hearing. She has moderate hearing loss in the low frequencies and has recently had a lot of fluid in both ears, complicating the problem. She has been talking louder and louder and was really struggling to understand conversation. Every now and then she would giggle and accuse me of saying something that according to her ears sounded very funny. She had a difficult time responding to conversation. I know she's been worried because she has been watching our Signing Time videos a lot, lately.
Today, she had surgery to place tubes in her ears and underwent a hearing test while under anesthesia.
She started to perk up about 7:30pm. She was listening to herself and said, "Dr. Gietzen fixed my funny voice!" Then, she would giggle in delight.
As we were snuggling in to read a new book, I said, "Come here, my beautiful girl."
She looked at me and smiled and said, "You mean your hearing girl.'
She's talking so much quieter and is so relaxed. She is so happy! Absolutely wonderful! Hearing aids should help even more.
Tomorrow, we will call our doctor and say thank you for returning the wonderful gift of sound.
My friend, a nonsmoker, is in a battle with lung cancer. She is in her second round of chemotherapy and radiation and has an amazing spirit. This week she wrote, "’I'm trying to soak in what this experience needs to teach me. I’m paying attention." Powerful words. She's a special lady.
I've been thinking about those words all day, today. Our family has faced one medical challenge after another. All three of my children were born prematurely, the youngest, weighing just 2.5 pounds. The last six years have brought countless medical visits for my daughter and I, several surgeries, the loss of my job due to illness, and a quest for our restored health and answers.
Jane's words prompt me to think about what I've learned from our own experiences.
1) Never wear a watch. When you are waiting, the time goes by much faster without one.
2) Live in the moment. If your daughter wants to get the Christmas tree lights out in October and turn the dining room into her favorite soup and sandwich hang-out, join her. Just don't tell your friends when it starts to snow. : )
3) Find the gifts and blessings. Today's: a rainbow, physical therapy, a feature in livelearnnow , spending time with a dear friend, listening to my daughters sing. They are all around. The kind people you meet each day. A fresh tomato from the garden. Dad's beautiful flowers. Dark organic chocolate. A smile and hug when your child runs to meet you from the bus. Family.
4) I trust my own instincts.
5) I've learned you must be an advocate for yourself in the medical field.
6) Try to stay level. As my internist keeps reminding me, "You're running a marathon." : )
7 ) Accept help. My sister with breast cancer taught me the importance of this. Likewise, help others whenever you can.
8) If asked, "How are you doing?" I now answer, "We're okay."
9) You can make the world better one smile at a time and always remember, your sense of humor is your best medicine.
I had a strange experience last spring. In going through my medical history again for the "zillionth" time, a nurse expressed surprise when she learned I had been a science teacher.
"You don't seem like the average teacher!" she said.
When I asked her what she meant, she explained, "You aren't rushed!"
Perhaps I am a different person for all of this. One of my daughter's doctor's once said, 'We would never wish any of this on a child, but kids that face adversity grow up to be pretty special adults.'
So far, his wisdom has proved to be absolutely true.
A few weeks ago, I was asked to make a trio of dolls to symbolize a very special friendship. Mary, one of the group, was suffering from ovarian cancer and died a few days later. Mary loved to read, journal, play the flute and had dreamed of walking again along the beach and putting her feet in the water. This treasury was created in honor of Mary and her very special friends. To learn more about Mary, please visit a comfortable cup of tea . Mary's friend, Sarah, is a beautiful writer and her words will touch your heart.
I have begun offering Mary's fairy at huesofnature. Five dollars from each sale will be donated to Gilda's House in Detroit, a favorite of Mary's.
Our daughter learned that starting school with a brand new do and a donation to Locks of Love, a public non-profit that helps disadvantaged children in the U.S. and Canada who are suffering with long-term hair loss, makes you feel pretty good! The hair pieces are created especially for each child and are vacuum sealed so they can only be released by the child. No fear of losing one in gym class or on the playground! Kids can be kids again! Minimum length for donation is 10 inches. Visit Locks of Love to learn more!
It was a very happy pair of birthdays celebrated at the University of Michigan Biological Station this past week! Our daughter turned six and the Station turned 100! A favorite present, a hand dyed rainbow streamer, handmade by birchleafdesigns and sized just right for little ones! We had so much fun celebrating with old friends! Time passed too quickly, but it was a magical four days.
I have been profoundly touched by a recent request to celebrate a very special friendship. These three friends; a lover of birds, writing and quilts; a lover of journals, books and the flute; a lover of books and hearts are facing a very difficult time. The beautiful blue fairy, with shoes strapped to her dress, has her wings and is about to fly. In real life, she has late stage ovarian cancer. Give those you love a special hug, breathe deep and enjoy the beauty around you! Wishing you peace.
This morning, my youngest returned for a Knee High Naturalist class, Playing with the Senses, taught by Miss Allison, through the Little Traverse Conservancy. It was every bit a hit as last week's class on Insects. This week, the kids made nature potions by crushing their choice of leaves and needles, adding a bit of water, each creating a delightful concoction to smell. Favorites included lavender, mint, balsam fir, lemon basil and dill. After sharing their creations, they went on a short nature walk to gather items of different textures to explore the sense of touch. They created beautiful collages using their treasures (leaves, flower petals, even an acorn) by sticking their objects onto a piece of cardboard that had several pieces of double sided tape attached. The children finished with the sense of taste, as they snacked on a variety of berries and string cheese. Very simple activities that completely captured the children's imaginations. We plan to share what we discovered at our next birthday party! Thanks Miss Allison! : )
One of the best things about Etsy would have to be the friends you meet! Arthur Simo is a talented teenage artist with autism. I featured Arthur's work in one of my first treasuries and when he woke in the morning to check his site, all of his listings had sold. At first, he thought there was a problem with Etsy, which happily there wasn't! : ) I was fortunate because Arthur listed the piece above a little later and it is still my favorite. Arthur's Etsy sales help pay for his therapy. Arthur and his mom, Adriana, have worked very hard to increase autism awareness through Arthur's beautiful treasuries. Through their inspiration, I designed an autism fairy to reflect Arthur's artwork and donate $5 from each sale to kindtree.org, an organization Arthur is a part of. Thank you Arthur and Adriana for your inspiration! Please visit firstname.lastname@example.org. It will make your day and Arthur's, too!
At hues of nature, I am able to blend my loves of nature photography with fiber arts. I want each visit to hues of nature to include a bit of magic and sense of wonder. Tonight, the light was fantastic when I finished my latest fairy. We were minutes away from a storm, but it had not started raining yet, so the quality of light was perfect. I headed to our purple cone flowers that began blooming this week, for a fairy photo shoot. When I downloaded the images, I was blown away by the colors! Aren't they fabulous? What a summer's gift!
My second set of book fairies and elves just arrived at our favorite independent bookstore, McLean & Eakin. I've made a little field journal for each of the lil' flower pixies and lil' forest elves from recycled paper from BeeDazzlesGifts on Etsy. Thanks, Bee! I'm so pleased to work with McLean & Eakin. They are a gem of northern Michigan, donating books to local schools and are truly the nicest people you will ever meet. We have been treated to the most wonderful authors and illustrators! My girls dressed in their fanciest clothes for the Fancy Nancy Tea Party this spring with author Jane O'Connor. We've laughed with Tony DiTerlizzi and Jon Scieszka and were amazed by the paper folding talents of Robert Sabuda. Our dear friend, photographer Pete Souza will be signing his book, The Rise of Barack Obama on August 14 from 4-6pm. Tickets are free, but required. Just call the bookstore if you are in the area. I picked up ours today.
The girls and I visited the Fiber Arts Festival at Castle Farms in Charlevoix, MI yesterday. What a fabulous collection of beautiful items! Very inspiring. We came across Chickasaw Farms where I was able to purchase beautiful French Angora wool combings. Fellow Etsy and Northern Michigan artist, Mary Jill Lemieur, suggested I try an Angora bunny and I am so glad she did. So soft and light as a feather. How fun to create a bunny of bunny fur!
It was a fantastic summer day! My construction engineers headed outside and began looking for the perfect places to construct our new fairy homes. They gathered sticks, pine cones and needles, dried flowers, bark and wool roving from our friend's sheep named Blackberry. Our fairies will be sleeping much better tonight, though I think they'll be sharing their new home with a robin who flew away just as I took the picture.
I just finished my first pair of wet felted baby booties and I am so thrilled with how they turned out! I have been in love with Joyce's hand painted roving from Elliebelly and the colors turned out completely delightful. I can't keep my eyes off them, or my fingers. They are SOO soft! I have been working on them, off and on, for several days. Wet felting involves soap, water and a lot rubbing until the fibers mesh together. Then alternate hot and cold water baths, more rubbing, and repeat baths until the booties felt and shrink to baby proportions. Because felting is a bit magical, each piece is truly one of a kind.
When the pair dried, I needle felted, by poking many times with a barbed needle, wool roving along the tops to give the appearance of flowers and for added softness. I added a needle felted bee to each and hand embroidered wings and a flight line. What a happy addition to huesofnature.