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My Lyme Disease Story

To read a short version of this story, read my post on No Time Like the Present.

On March 23, 2001, my life changed forever. It was the beginning of the nightmare of Lyme Disease. What we thought was stomach flu turned into a 40 day coma and brought me to the brink of death.

cee-hospital

At first we didn’t think anything of it. I thought I had the same stomach flu that had been doing around my office at work. But then I started having difficulty breathing, so Chris knew that it wasn’t stomach flu and called the paramedics. Before we could reach the hospital, they had to pull the ambulance over so that they could intubate me. I had lost the ability to breathe on my own. As my lungs failed, that started a whole cascade of failures.

Upon entering the hospital, my blood sugar was 1,400. Normal is 100 and death usually occurs around 1,000. When the paramedics came, I was still walking and talking. I had no history of diabetes before this. We didn’t know it at the time, but my pancreas had already shut down. My body had become acidotic, and was dissolving itself. I was bleeding internally. My kidneys also failed, so my body lost its ability to filter out toxins. The doctors didn’t think I’d live through the night, but against all odds I survived. What we didn’t know was that the worst was still to come.

Because of the high blood sugar, I got a systemic yeast infection which ran wild in my body. Every place they started an IV became instantly infected. They were pumping fluids, blood and the most potent of antibiotics into me round the clock. I developed a 107 temperature for about a week or so. They packed my body in ice to try to cool me. I was on continual dialysis because of the kidney failure. They took my blood out through the jugular vein in my neck, sent it to a big machine that filtered and cooled it, and then pumped it back into me. My room in intensive care was so cold it resembled a meat locker.

The infection started to eat the retinas of my eyes. The doctors were afraid it would soon attack my brain. Chris and the doctors decided to put me on a real strong medicine which most likely would permanently kill my kidneys. Kidneys or life? They chose life. You can replace a kidney.

There were more things that went wrong, like the staph infection, but I think you get the idea. I hung on, and somehow made it through.

When I woke up out of my coma, I had a lot to learn about being so sick. The most obvious was I couldn’t even move my fingers. For every day in a coma, I lost 1 to 1-1/2 percent of my muscle mass. So I had to have therapy to start to move again – even my hands. I couldn’t roll over in bed, sit up or feed myself.

When I finally came off the ventilator, I could not talk at all for about a month and only very quietly after that. My voice is still altered. Because of being on the ventilator and having feeding and drainage tubes down my throat I have a lot of permanent scar tissue. The wonderful news was I could still see and my brain seemed to be intact.

The doctors never did learn why I got so sick. They also had no idea why I seemed to return to health, but they did enjoy taking credit for it. They called me a miracle. On July 5, 2001, I was released from the hospital. I wasn’t even able to sit up by myself. I could barely feed myself and when I could, I was unable to keep food in me. I no longer had any medical insurance and the hospital kicked me out.

Over the next couple of years I seemed to heal remarkably well. Kidneys functioned wonderfully. Blood sugar returned to normal. I slowly increased in strength and energy. I gave up the wheel chair. Still moved slowly but well.

On November 1, 2005, two days before we were going to move from Denver to Portland, I again ended up in the hospital. This time with a blood sugar of 1,100 and pneumonia. Once again, for no apparent reason, I was close to death. This time I was diagnosed as a Type I diabetic (insulin dependent). With only being out of the hospital two weeks, on November 23, 2005, we drove finally drove to our new home in Oregon. I took a couple months off to recuperate and gain strength from my last illness before I got a full time job.

In Canby I found a doctor who eventually figured out what was wrong with me. Finally in May of 2009 I was diagnosed with Chronic Lyme Disease. Yes, it is the disease that is caused by a tick bite. I was instantly put on a combination of three antibiotics which I’ll be taking for life.

The reason why I recovered so well from both my hospitalizations was that I was put on heavy duty antibiotics. Once the infection seemed to clear up, they took me off the meds. Over time, Lyme took over my body again. Fortunately, we found a Lyme aware doctor who got me back on antibiotics and kept me alive. There is no known cure for Lyme Disease. From looking back at my life and symptoms, I’ve had Lyme at least 25 years or longer. It’s a disease that frequently goes undiagnosed, and ends in death.

Chronic Lyme has affected my life in nearly every aspect. I think the biggest aspect is loneliness. Because of the physical limitations I have (constant fatigue, achy muscles, slow, stiff, unable to move a lot), I slowly retreated from activities and life in general. Prior to getting Lyme I was a runner, very social, active in volunteer organizations, popular at work. Then slowly over the years, I shut down every activity I did.

In 2012, my health started getting worse. I have edema real bad in both legs and one of my legs started to leak water. I was put on another antibiotic to help with that. That means I was then taking four different types of antibiotics to stay alive. It was a juggling act… some had to be taken with food, others without food. One was so powerful that I’d vomit it back up and I’d have to take more until I could keep it down. My doctor said they’d done as much for me as they could. I would always be on antibiotics. Eventually they wouldn’t be able to control my symptoms any more, and I would die. By October of 2012, I was sure that time had come. I could feel my body start to collapse again, and I didn’t think I had any more strength to fight. How many times can you cheat death?

Early in November 2012, I went to see a Qigong Healing master. We decided to try Traditional Chinese Medicine, since Western medicine had given up on me. It’s definitely a different approach, but against all odds, my body is is actually starting to heal. I am off of all my antibiotics, something I was told I would never be able to live without. There are days I actually feel alive and have energy. It is a foreign concept to me and I sure do enjoy it. Life is good and so full excitement and wonder.

This photo was taken while I was in the hospital…one of the few times I was able to go outside.  Chris brought our 4 dogs to come visit me.

020420hospital dogs.jpg

These photos were taken a couple months after I was released from the hospital in 2001
There was one particular nurse in the ICU that was so special to me.

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I did stay in touch the nurses and physical therapist and a minister from my rehab.020420hospital staff.jpg

302 replies »

  1. I am so sorry to read about all the things you went through. I have seen a documentary about Lyme on Amazon, called “Under Our Skin” and I can understand how hard it is. They said that basically the two week treatment that is approved by the insurance companies does not cure you. And antibiotics are a double edged sword. I think it’s great you are off them, and that you are fighting. I think sometimes the Traditional Medicine can be a better alternative. Speaking about Alternative/Traditional Medicine, I hate to do this here, but I can’t really help it – and it might help – there’s an herb called Andrographis that some people take for Lyme and say it helps a lot. Sometimes we just stumble upon some information by accident and it’s god to share.

    Take care and keep up the good work!

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  2. Good god. What an amazing and unspeakable story. Your will to live is commendable, and once again I congratulate you.

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  3. Wow! That’s a really amazing story. I don’t know where I saw it, but not too long ago I either read a story or saw a tv broadcast on someone with the same chronic lyme disease issue. It took her years to get nearly back to normal. I can’t even imagine living that way. It has to be so frustrating.

    Illness not only takes a toll on our bodies, but on our emotional and spiritual well being. It sounds like you came out even stronger. I’m also turning away from Western medicine, because it seems to only be a temporary fix. Qigong is something I’m interested in learning more about. I’ve been doing Pranic Healing for almost 2 years now, which has similar breathing techniques to Qigong. It also involves meditation. There are many free Pranic Healing clinics around the country, so you may want to check that out. I was very skeptical when I first went, but the results were so amazing that it has changed my life and increased my belief in energy.

    I hope that whatever path you choose, it works for your quickly. 🙂

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  4. My story is not as devastating as yours but I was diagnosed with lyme disease in August 2013. I never get really sick, haven’t taken an antibiotic for over a decade. So, when I started feeling weak I thought I was just tired. I used to work 11-7 as an RN and even though I was not feeling right I decided to go to work. While I was at work that night I felt weaker and thought I was having a hot flash as well. I went out to the nurse’s station and took my temp. Since I rarely get sick I was shocked to see a temp of 102. I dosed myself with extra strength Tylenol to bring down the temp and yes, it did take the temp down until the next dose of Tylenol was required. After three days of not being able to rid my body of that 102+ temp my husband tried to en-courage me to seen my primary doctor. When I called his office I wasn’t sure if he would be able to see me or could even be able to find my file. It had been so many years since I seen him. I used to joke with my fellow nurses that if I ever came into the ER to please make sure that they didn’t overdose me because I never take meds. My chief complaint was that I had a fever that wouldn’t go away. So, he ordered a complete blood workup which came back completely normal. I was very perplexed not that I wanted to be sick but that I couldn’t shake the fever. About five days later I noticed a red spot under my bra strap and I thought it was just too tight. I took my bra off but the red area started to spread and was warm and tender. I hated to go to the doctor’s again so I started to track the red area with a magic marker. When I realized that I had an ongoing problem that was spreading and definitely needed to go to the doctor’s once again. I hated going but I called and asked the receptionist if I could just take a couple of minutes of his time to take a peek at the area. She slipped me in between patients and as soon as he saw it he diagnosed it as Lyme Disease. What really surprised me was that when the results of my blood test for Lyme Disease were positive they were extremely high. A normal reading was 0.00-0.90 my results were 6.89. In fact when they were submitted to the state health dept my doctor was called and told that they were the highest result ever seen in the state. However, I am doing just fine right now. I was able to get on the antibiotic dose within a short time and thatis most likely the fact that I have not taken any antibiotics for soooo long. Thought your article was so interesting and I am counting my blessings. God bless you!!!

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  5. YOu are a survivor Cee, my sister has it and her son. They were camping and I guess they both got bit…and by the time they found out they both had no recovery method. So sad to hear your story I have tears..My blessings of healing now sent. Love Jackie

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  6. Cee, I don’t know why I haven’t ever read this on your site, but a friend of mine just discovered that he has Lyme Disease. When I saw that page in your menu, I read your story. How terrible for you, and how wonderful that you have done so well. You have such a sweet personality, and I just never gave it a thought that you could have been through so much. Neither did I realize how serious Lyme Disease is. You have touched my heart, and I wish you the best as you continue to heal. god bless you.

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  7. I know several people who have Lyme Disease, although not one of them has ended up in a coma. It can be physically debilitating! We can thank Western medicine for keeping you alive, even if they eventually threw in the towel; seemingly sealing your fate (you showed them). And shame on the hospital for kicking you out. I hate how insurance controls our personal health and well-being. Medicine used to be very different. No hospital should be a for profit enterprise and neither should insurance companies. And insurance should pay for alternative medical options. Oops – tangent.

    So, I am happy to know how much Chinese Medicine has improved your life and that you have been able to stop taking those horrible antibiotics. Now, a year later, I would love to hear an update.

    Considering what you have gone through the past twelve years, you are a very positive person. I am glad you shared your story and it is nice to know you (in that online sort of way).

    Hugs and energy to you!

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  10. Horrendous !! Cee, I am just so glad to see you back at the bubble. Woo hoo, your one strong woman….hugs, Di

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  15. Dear Cee I salute your fighting spirit! And its the spirit that drives our body, so I wish you new horizons to conquer on your road to recovery. All the best and god bless…and an amazing blog for sure.

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  16. It’s good to hear from you again Cee. I notice you’re back on WordPress again. I missed your photo challenges and photography in general. It was my fault for not keeping track of you exploits. I hope to check back with you often. I’m in my slow period concerning photography. I’ve come to hate the cold as my type II diabetes is changing my metabolism. – Bob

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  17. Have you read the book “Out of the Woods” by Katina Makris? She’s a friend of mine that I swim with….she speaks all over now about Lyme disease. It has helped her heal. I recommend it! Peace and good health!

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  20. Wow – that is an incredible story. Thank you for sharing. I wish you the best of luck in your journey to becoming healthy again! (Or as close to healthy as you can get) 🙂

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  21. Hello Cee-
    As one who is a stead fast believer in miracles… I am in awe of your story! It is wonderful that you prevailed and are able to inspire a joyful community of photographers with your photography and photo challenges. God bless you Cee. It’s wonderful the new approach to returning to your healthy self is going so well. Stay on that path!!

    I feel honored that you are following my blog. Thank you. It will be fun to follow you as well… I plan to try your black and white challenge.

    Smiles,
    Jane

    Oh, I also think it’s great that we are both Oregonians:)

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  22. Omg, Cee… You’ve been through quite a lot… What an inspiration for all who just want to give up… I live with constant bank pain. I’m trying Acupuncture now, but if it doesn’t work, I may try Qui gong… Thanks for sharing this amazing story…

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  25. Wow, you have been to hell and back with your health, how scary to suffer for something so long and for it to just kick in and effectively try to kill you. Goodness, you are just amazing, you are here and getting better. You know you are an inspiration to people like me, I’ve been suffering chronic pain for 2-3 years, I pretend 2 but its 3, I’ve retreated, become less physical and yes containt pain is draining, but if you can do it, so can I, it’s just finding the right therapy, or the right state of mind or the right therapist, or all of them. I take my hat off to you xx

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      • Awe well it’s a pleasure to write and find out about the person behind the blog it just makes it a different experience having that more personal touch and once I started reading your history I couldn’t stop as I was simply so shocked at everything that was happening to you x

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  26. What a story! I had no idea that Lyme could be so devastating. I have different health issues of my own, and have found the alternative medicine avenues to be extremely helpful also. I have experienced energy healing.

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  28. My goodness, what a story, what you have been through…! Congratulations on your getting better. I, too, believe in Chinese medicine and it is amazing how they can help! good, that you have been able to get off the meds.
    Keep on going – you can do it 🙂 – and all the very best to you! 🙂

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  29. Oh Cee ; I am so sorry to read about your nightmarish health adventure.All is well that ends well and now you can enjoy all the gifts of life.Thanks for sharing this aweful experience with us,for oftentimes we have our health and we don’t appreciate it as we take it for granted.
    Stay well my friend,
    Doda

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  31. That sounds like quite the ordeal, but I think it’s great you were able to stay positive throughout it all. You are definitely helping people already by sharing your story and raising awareness for this disease.

    That you used natural healing energies is very inspiring in many ways. People need those alternative treatments more than ever, especially with a lifelong illness like you have. I am sure you are going to be a wonderful healer someday!

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  32. I am so glad you are doing well. I was not sure how they decided to test you for Lyme with your symptoms. I began to get strange neurological problems shortly after I had a bullseye rash that the Dr diagnosed originally as ringworm. Problem was it never itched and never spread. They have tested me several times for it, not sure the type of test, but always comes back negative. They were blaming it on of all things, Epstein Barr, after I had a bad case of mono. I still think this is what I have and tell my Dr this all the time. Thanks for being brave and telling your story.

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    • It is really hard if not impossible to test for lymes once you have had it for over a year. The thing that can be tested for is the co-infections. That is what makes you really sick. Testing for those (very expensive) may be worth it. A few of the common co-infections are Borrelia, Babesia, Bartonella, and Ehrlichia. Those need to be treated and if you have lymes, western medicine doctors will say you can never cure the infections…manage them and be on antibiotics for your lifetime. If you want to talk more, please feel free to contact me through my contact page. Sometimes you just need a place to vent!

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  35. Wow, I did not realize I knew Lime disease was a horrible thing but not this bad. I didn’t even know numbers for sugar as high as 1100 was possible. My husband is a diabetic and at 400 they was threatening hospitalization.

    I wish you well and I am sorry this has happen to you. Good luck.

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  38. Cee – i am so happy you have found a treatment that is effective. Even without the life-threatening nightmare you’ve been through, any chronic illness is tough on patirnt snd caregiver. It changes lives for both. Here’s hoping you will always continue to improve. Sammy D at http://www.bemuzin.com

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  39. I am so sorry to learn of your suffering and chronic illness, but what an amazing and powerful story of determination and courage in the face of such terrible odds. You are an inspiration! I am going to have to learn Qigong for healing. Thank you for sharing the story of your struggle, so that others might benefit.

    Best to you! Kimberley

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  40. What an amazing story and thank you so much for sharing!
    I am sure you’ll do whatever you can to make the best out of your life. You are an inspiration! My very best wishes, Love Uta. 🙂

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  41. Thanks for telling us what it’s like to have Lyme Disease. You (and the commenters who’ve also had the disease) have helped me understand a student of mine who has it and is recovering. He is taking private French lessons with me because he’s not up to joining a class. He has been in a wheelchair for a year and just this week has started walking with a walking stick. Now I know how life has been for him before I met him. Thanks again.

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  43. Cee, imagine my surprise to find your Lyme Disease story on your photoblog, but I am so glad you shared and continue to share your experience. I am thrilled for you that you have begun your training as a Qigong instructor. Taking something so devastating and turning it into a positive is unbelievably powerful.

    My teenage daughter was ill for over a year, saw countless physicans who prescribed the usual set of tests, routine and invasive, and the best any could come up with was IBS, which to me was tantamount to saying they didn’t know what it was. She was told to sleep better, eat better, and manage her stress better. All the while, she was in pain from an injury that would never heal, unable to eat much of anything, unable to read and comprehend her schoolwork, and suffered so many other symptoms too numerous to list.

    Knowing that I had to take our search for answers outside of the mainstream, I came across celiac disease and gluten intolerance, which led me to a D.O. who turned out to be Lyme literate. A year after becoming ill, she was finally diagnosed with chronic Lyme, biotoxin illness, and gluten intolerance.

    The treatments, the unending medications and the rituals surrounding their administration, the elimination diet, the pain, the nausea, the fatigue – it broke my heart. My active, vibrant girl was reduced to spending her days in bed. She lost her junior year and then some.

    Today, she still remains under treatment, but is back in school and getting ready to begin her senior year. She has good days and bad and has to guard her strength. She will forever be gluten intolerant. Leaving for college will pose its own set of issues (which I worry about more than she). I am just thankful for the doc who knew how to help us and for my daughter’s incredible determination to become, once again, a “normal” teen. She has dealt with all of this in a remarkably mature, responsible manner and I just burst with pride over that.

    What have I learned from all of this? Traditional medicine doesn’t have all the answers. One has to trust their gut in pursuing the answers. Support can come from so many different places. The internet was my lifesaver. Never, ever give up. I’m a firm believer in alternative medicine.

    Blessings to you as you continue your recovery and Godspeed with your training. With your experience and your compassionate nature, you are a natural to follow that road and will be a welcome advocate for those continuing to seek help outside the traditional avenues.

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  45. Cee–you are one amazing lady! Thanks so much for the like of my ‘on top.’ I hope you stay on top for a very long time. Your blog is too fun!

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  46. Quite an odyssey because of those little ticks. I salute your grit and prey for continued well being.

    btw World Health Organization theme for this Wrold Health Day ( celebrated on April 7th, WHO was founded on 7th Apr 1948) is “Small bite big threat”.

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  47. Oh Dear Cee, I knew and heard you were sick but never knew what had happened, I cry for you as I read what you went thru..my stomach turned just to think of how horrible this was …Do Remember Heather King at red bubble, she has lyme disease and is going thru hell as you did…I am so happy for you that you made it through…I remember when I first saw you back on redbubble it wasn’t that long ago and couldn’t rushing to my bmail to say hi…and that you were back…God Bless you…I would say he did…but we wonder why we have to go thru certain illnesses..
    one of these day I will pick up one of your challenges…I like the one ..sharing..I always kind of share my life anyhow..lol
    open book, well almost..huggs to a special lady with wings..hehe..love it
    Sherri

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    • Heather and I have written a lot off and on over the years. She has it pretty bad. I honestly don’t know if she is going to pull through. Why I did is a miracle. I don’t know of anyone who had lymes as long as me and are still alive. And to think the qigong is curing me…Still have a ways to go, but the threat of death is no longer a daily part of my life. How wonderful that is. Now to be patient and let my body heal and to continue with my qigong.

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  49. What a terrible time you’ve had. I wish only the best for you in years to come. Hopefully your blog helps with the loneliness. Be well. 🙂

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      • I didn’t want to admit it the first time I commented, Cee, but as I read your post, my heart was beating so fast and I forgot to breathe. You miraculously survived a terrible nightmare. Your experience and the way you handled it gives such insight into your character. Your health might be compromised, but you have used your positive energy and creativity to build and inspire a whole community of bloggers, photographers, storytellers, and world citizens. I admire that greatly, and am so pleased to have become one of your community.

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  51. An amazing story. Thank you for sharing it. I am so glad you have a partner that is willing to stick it out….you and Chris are both fortunate to have each other.
    My partner and I are also animal lovers. I know if I were in the hospital for any length of time I would need her to bring one of my furr-babies for a visit!!

    I am also happy to hear you are regaining health…and with that I assume peace!

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  52. Hey Cee, I don’t know why it took me so long to find and read this, but no matter, I just did. You decided to come back from the brink of death and fight like the warrior that you are, so you can be a light to others, and in doing this blog and becoming a teacher/healer, you will doubly fulfill that role. I bow to you.
    I have a chronic illness and daily pain/difficulties, but just now when I finished reading your story, I realized that I shouldn’t complain. But my pain helps me understand to some extent your predicament. I’m happy to have joined your writing challenge and met you. Bless you.

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  54. OMG Cee, what an ordeal you have been through! Another blogger I used to follow got Lyme disease but I think they caught it fairly early. He was sick for months though. I cannot imagine how difficult this was! You are a wonder!

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  55. That’s a heavy, but very inspiring story, Cee. We’re so happy you survived and found your way to Qi gong and started to heal. Granny and I think you’re a human Angel. Pawkisses for a wonderful weekend 🙂

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  56. around 1998 i pulled offa me chest an engourged tick full of blood! and well within 12 hours i was in hospital, thank god they knew what caused the problem, they told me if i had stayed at home an tried to sweat it out like the flu i would have died, so i was lucky out of hospital in a couple of days, so yes it is tick season in the oak shrubs so beware, an yes agreed get medical attention if ya have been devoured upon by a tick an ya know it, cuz ya never know if the tick was infected. so glad ur doing much better these days 🙂 Q

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  57. Hi Cee, I am always amazed at what humans can endure and survive. Keep up your positive attitude and what a great way to keep busy by blogging and sharing your experiences with us. I also find photography and blogging part of a healing process after experiencing life’s blows in my life

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  59. It is a very interesting story and it makes me sad how they can throw out a person who still are not well enough and not even treated right just due to medical insurance. I am so glad that we don´t have that system in Sweden and I surely hope we never will. It is good that you share your story. Borrelia (which I think it is you had) is kind of common in the bugs in the deep forests of Sweden so I´m checking. Got a bite this about a month ago so is looking out for the symptoms. Very bad disease that can entail very different things I understand.

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    • Oh yeah, it can have my different symptoms. If you only got bit a month ago, the tests for Lymes is fairly accurate. Please let me know how you are doing.

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      • Yeah well. I removed it within hours and normally that is no danger then (within a day they say here). Some people get five bites a year or more. The key is checking for them so I´ve heard and pulling them straight out (in a straight angle). I have no marks so no going to the doctor for me since I checked the spot for a month now with no signs. But my neighbour got is not as bad as you but at least he was sick for a year or more and went for special treatments as you did but maybe not chinese medicine in Germany. But the people who gotten real sick are normally the people who haven´t noticed the lite bug. But it is worrying with this kind of bacterias. But on me at least they itch when they bite through and that is how I find them. Is borrelia actually common in America?

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  61. Wow! You are one amazing woman!! My husband has been fighting chronic Rocky Mountain Spotted Fever for years. I wonder if they misdiagnosed him and he really has Lyme. Keep on keeping good!! 😀

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  63. What an incredible story, Cee! I’ve visited your blog many times but missed this page. I had no idea – now I understand your sign off, of “Qi hugs”. 🙂 Thanks for the nudge to go back to practicing my Tai Chi and to pursue treatment with my Chinese doctor. Cheerios, CC

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  66. I agree with Neha, you’re an inspiration, Cee. A survivor, a fighter. A miracle. Your story reminded me of my husband’s mysterious illness that nearly killed him in 2009. And the doctors called him too a survivor and fighter. I still can’t write about it, it was so traumatic. It’s Wegener’s, a blood disorder that can affect all the organs, mostly lungs and kidneys. It’s a rare disease, incurable but treatable, so now he’s swallowing all kinds of medications to stay alive. Once a sportsman and very active, he gets out of breath after a few stairs or walking on a slightly steeper path. But being a fighter like you, he continues to enjoy life and does photography as before, although he has to walk with a crutch.

    Thank you for sharing your story, Cee. It makes me appreciate all that is good in life. The photo with Chris and your four dogs talks of great love that surrounds you. I’m so glad for you that Qigong has helped you so much and wish you all the best. May your dream to become a Qigong instructor come true.

    And special thanks for providing so much pleasure to us through your beautiful photography and various challenges.

    Cheers 🙂 Irina

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    • Oh Irina thank you dear heart. You have been through a lot with your husband. I know what my illness has done to Chris over the years. It is hard to be a support person and a loved one. Let’s keep going together. 🙂

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  67. I just read your story now. I do not have any words, I just want to give you a big hug now! I am thankful you are here doing wonderfully and going strong!

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  71. Hugs all around for sure. My gosh that is an intense story and I’m sure it’s the short version. As I commented on your other post your will to survive and strength is admirable. It reminds me that good health is not something to be taken for granted and sometimes it happens. It’s not until you get sick or read a story such as yours that one really remembers what a blessing and a privilege it is. I’m grateful too that you’ve shared your story as it opens our eyes to the seriousness of this disease; I certainly was not aware it could be this terrible and I’ve lived in places where tics are common basically all my life. Having dogs, as you know, also brings them that much closer to us.

    I’ve never heard of Qigong but am glad to have now. It’s so great to hear that you’re still with us and spreading awareness just by posting this. It’s good too that you have people to support you and help you through the hardest times. I hope you continue to heal and achieve your dreams and goals, may you one day – sooner than later perhaps – find yourself pain free, active and healthy. God bless you. 😀

    And hey, PROPS for keeping this blog and doing all your photography, I would never have guessed this all to be the case.

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    • I don’t work so this is my “work” and I have a blast doing it. I’m so glad you stopped by and commented. I really don’t talk much of lyme disease anymore because it seems so far embed from me now. My body still has a ways to go to return to normal functioning, but it really gets better all the time. 🙂

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      • What excellent work then! You’re still spreading awareness even if you don’t talk about it much since you have this post on your page. 😉

        I’m glad to hear that you are getting better, keep it coming!

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  73. Wow! I am so impressed by your story and loved the smile in your eyes.
    I know that you had many bad days passing without a single smile and wondering why this was happening to you. But still in the end, you have that smile.

    I have lots of chronic diseases and most of them are auto-immune. So the doctors explanation: “We do not know why this happens”… Thanks doc for nothing 🙂

    Therefore, healing master was the best thing you did for your health. I myself try to find one for me too. Actually, I want to go and learn from shamans when I get healthy enough to travel.

    I would love to do a project with you. Would you like to do a project like mine?

    http://my35project.com/start-yours-now/

    I would love to help. Also, I decided to participate in your challenges. I loved your share your world challenge.

    Thank you so much for blogging. I cried while I was reading your story as I remembered my time in the hospitals. We have so much to give and thank God we have the internet.

    I hope we will meet some day in person too. Until then, let’s keep in touch.

    Love,
    Alex

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  74. What tough times you’ve been through, Cee – it must have taken incredible strength and determination to get through these. Your story has reminded me that being healthy isn’t to be taken for granted – I hope you continue on your path to a full recovery and wish you good health in the times to come.
    Thank you for taking the time to visit my blog. And your pictures are beautiful; I hope to take part in your challenges one day, once I know a bit more about photography. 🙂

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    • Thanks so much for your well wishes. I hope you take part in my challenges earlier than you think. You will learn a lot and have a lot of fun in the meantime. Thanks so much for commenting and stopping by my blog.

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  75. Oh my Cee!
    I love taking part in your challenges and I was just saying to Piet today that you must have lots of energy to keep up with all the goings-on on this blog. Then I read your story.
    You must have remarkable strength to keep going as you do (and to always sound so happy and cheerful). Admiration is not a strong enough noun.
    I hope your new treatment continues to cure you xx

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    • The Traditional Chinese Medicine is continuing to work miracles with me. I’m feeling better all the time. 🙂 Thanks so very much for stopping and taking the time write such a heart felt comment. Blessings.

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  76. Hello! I’m Birgitta; it’s a pleasure to meet you. :0) I must tell you, this is one of the most heart-breaking and difficult life stories I’ve ever read- just wow. That said, I too have suffered tremendously over the years with my own debilitating physiological disorder (excruciating migraines that last for 2 and 3 days long- without ceasing, and, a 2 CM arachnoid cyst on my brain stem, which doesn’t help matters at all) and I say all of that to say, I understand what that can do to your life- all the way around. For me, one of the hardest things dealing with is the ignorance of others. They perceive disabilities as “being lazy” or “antisocial”; I’m sure you know what I mean. It’s not hard to want to simply give up sometimes. The battle can be so great! I too am a photographer, by the way- great job with your pics! :0) Also, never ever ever give up on your dreams! My dream has been (for many years) to become a doctor- a psychologist, in fact. I’ve had my share of breakdowns and crap. ;0) That said, I’ll be going into my 5th year of psychology this fall- I’m going to try and go all the way and get my PhD- disability scmichability, eh? I know it’s been super hard for you, battling this disease, but remember this: the harder your battle, the greater your light shines for others without hope. I truly believe that with all of my heart. Hang in there! And keep shooting. You’ll be in my prayers. x

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    • Hi Birgitta, thanks so much for sharing part of your story with me. I’m sure you have been through a lot. I also want to applaud for your upbeat attitude and ambitions. You are a very cool person. I won’t ever give up….at least not yet!!! 🙂

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    • The Chinese medicine continues to work wonders for me. I’m getting strong and no signs of infection now for nearly two years. The world is once again knocking at my door. Thanks so much for caring 🙂

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        • Thanks 🙂 Master Liu has told me that I have increased my life span to five years…rather than the few days when I first started seeing her. My life span just keeps getting longer and longer. 🙂

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  78. Wow. I had no idea you had been through all that. I have a friend with Lyme disease and she is struggling mightily. I was so blessed to have been diagnosed within a week of contracting Lyme disease and was cured within a few weeks. I am so glad that you have found a way to regain your health. I will have to tell my friend about your experience. Thanks for sharing.

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    • Please do share my story with your friend. I know how bad it can get. You were lucky to have caught it quick. Thanks so much for stopping by and taking the time to read my page and comment 🙂

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  80. You are one brave soul. Sending you lots of hugs and I hope and pray that you continue to be healthy and live life to the fullest! Truly inspiring 😀

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  81. Holly moly! I felt weird to “like” this page, since the story is heavy, and your road is rough. But the fact that you are still here, is worth more than a “like” 🙂

    After photographing the dunes, I had a tick in my leg. I didn’t know it, until my girlfriend decided to check me after 4 days. So, I had a tick in my leg for four days! And now, every time I feel sick, she is worried about that horrible disease.

    Good luck with your journey, and enjoy photographing!

    Warm regards,
    Tieme

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  83. I had never noticed this page before, Cee. Wow. An incredible story of endurance. You are one tough cookie! So glad you seem to have found a means back to a healthier life…Judy

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    • Yep back to a healthier life. Master Liu told me this month I will most likely still be alive in 10 years …. and she said who knows maybe 20 or 30 years. 😀

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  84. I also had a virus, though not nearly as bad. I spend so much time outside, my doctor checked to see if I had limes. Thankfully no. But he was unable to do anything for me so I too went to alternative medicine, natural pathetic medicine. I got much better.
    I will not say I understand what you went through, but It sounds like God was taking care of you until you found doctor who knew what he was doing. So glad you are doing better.

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  85. Pingback: * Share Your World | Teachezwell Blog

  86. I am glad you are well! I see so much positivity generated from your blog. Everything is beautiful, everybody is kind. These make people better and thus make the world a better place. And it is because of you. May you and your family be blessed with continued good health and happiness.

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  87. Hi Cee,
    have you ever tried Whole30?
    It seems to help with Lyme Disease.
    I did it first time about 3 years ago, and have been trying to follow a paleo diet most of the time since then. I have never felt better. I am though lucky enough not to have any chronic diseases, but according to reports from other people who tried it, the program seems to help with Lyme disease as well.
    Anyways, just an idea to add to your current treatment and get you potentially feeling even better.
    All the best!

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  89. That was a harrowing tale. I felt panicky, even though I knew, obviously, you’d pulled through!
    You are absolutely a miracle! And from this post, I must conclude the staff at the hospitals you visited were excellent and Chinese medicine must surely work miracles. Wow!

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  90. Wow. You are truly blessed. A classmate that I reconnected with on Facebook has Lyme, too, but I had no idea about the specifics of it. Thanks for sharing your story.

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  91. I can only imagine how scared you must have feel at times. I am glad you found a way to live with this terrible disease. I wish they would find a cure for all the diseases that are incurable, but I am afraid they won’t, because they aren’t looking too hard. I have an autoimmune disease that I fight like a hawk, I wish there would be wouldn’t waste so much money on wars, but instead on studies to find cures. Thank you for sharing.

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    • I hear you and emphasize. I’m hope you can get to the point I am someday. I’ve still lost a lot of mobility, although that is slowly coming back. Buy my fears have all gone away and I am just a happy person. thanks for commenting and taking the time to read.

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      • I am very, very fortunate so far. I was born and raised in Europe and I started to research RA there as well, because I just hated the idea of being so heavily medicated at all time.

        I was on steroids and took pills that work like chemotherapy, the side effects scared me out of my mind. I tried to find alternative treatments, I just wanted to give it a try. I am since 8 months off my medication -knock on wood-. So far I can control RA with with food and what I eat. I am still learning a lot, it’s mind blowing.

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        • Qigong has gotten me off my meds too. There is a lot of diet changes because of it. Meditation. The biggest thing for me was diet and getting a lot of rest and sleep. I’ve now been off meds three years and slowly getting stronger. Before I started seeing my qigong master I was probably a couple weeks from dying. So I’ve come a long ways.

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  92. I was diagnosed with Lymes in 1987, if you look in the journal you see a picture of my knee! I was super lucky that my ped was on top of the research and I went on an experimental cocktail of drugs and was not allowed to use my knee at all until it was ‘cured’. I think I was super lucky to be listened to as a child but I also think that adults ignore things until they are too late.

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  93. This is quite a story. It’s remarkable that you are still alive. This hits close to home. While my wife’s disease did not require long-term hospitalization and was clearly not as severe as yours, I witnessed amazing strength and determination while she overcame her health issues. No doubt, your recovery required nothing less. I admire you for your transparency and thank you for sharing this story. My wife and I know what it means to be so open.

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  94. Cee, what an incredible story! I can’t tell you how often I tell people about the impact that your photography tips, blog, and friendship have encouraged me to be a better artist and a better person! I am so thankful that you are alive…and LIVING every moment so fully! I will continue to pray for you and Chris…mostly for health, peace, and life! ~Gracie K. 🙂

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  97. > Life is good and so full excitement and wonder. I can’t wait for the next couple of years to see what life will bring.

    This stance is what I love the most about you. One cannot do or go wrong with it. And the dog photo, of course, tearing me up big time. Life is good. ❤

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    • Thanks for commenting. Life is good. They were sweet dogs. We had to sell the pure breeds. We ended up losing (foreclosing) on that house. We were able to get them into great homes. We were able to keep the spotted dog though and our cats. Oh so long ago now.

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  98. Wow, I just read your journey through your severe life trauma, what a passage… you are a real survivor, good on you Cee for popping up out of the tunnel of debilitation… I’m quite awed by your journey, good luck my dear, your huge WordPress interaction and following is a massive inspiration to us all, I’m awed by your achievements , humbled by your generosity in your blogging and wish you all the best, glad I found you x

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      • Oh gosh, thanks Cee for responding.. going to tell you a small story here.. 2 weeks ago I got fired for economic reasons, recession has hit Dubai badly, there are a few unfair reasons in my case which involves too much history, so it’s not appropriate to go into it.. today was my last day after 16 years and I was kind of upside down last night, it’s been a long haul and I’m of an age where a new job is hard to find here, so I have made the decision to ease out of the Middle East slowly, I have a few more projects to complete then it’s home to Cyprus in the next few months. Last night I read your blog and your health battle, I stopped and looked at what you have personally achieved, your story really touched me and I thought…. You know Vicky, your problems are small ones in comparison with others, I have my health and I can deal with this, personally I’m ok. Your story made that happen for me last night, I sailed through my last day today with smiles and I’m feeling pretty cool about my future… Soon, I will have time to enter ALL your challenges 🙂 … keep well Cee x

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  99. I can tell you what you haven’t lost.. an ability to see and write the most interesting things. I generally have a laugh, and a chuckle at your imaginative writings, and look forward to reading them. Good to read that you are getting healthier as time goes by… 🙂

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  101. You are a great writer and photographer! That’s to say a great person! So happy to know you are healing and feeling better every day.

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  102. For some reason, although I’d heard you mention your Lyme disease several times, I had never read this story..What an incredible lot you have been through. You certainly found a way to “un-isolate” yourself through your blog, though. I had always wondered how you could devote so much time and energy to it and now I know. One thing I’ve learned in life is that sometimes the most horrendous events can have some good results and the time your illness has left you to devote to blogging has influenced so many positively. You’ve created a little world here and you are anything but isolated in it! oxoxo

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    • I would have assumed you saw this page before. Isn’t strange how we get to know people on the blogs and feel close to people (because we are) and how much we can still miss….even though it is right in front of us. Guess that is true on all of life. No I don’t feel isolated anymore…not like I used to. That is for sure. Thanks for the reminder. Chris always tells me that I taught her how to turn the bad into good. Get’s it is a little motto for myself.

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      • I read one comment in particular by a woman who was worried about her future and who turned her attitude around entirely, realizing that with her good health she had everything she needed. So, as painful as your past health issues have been, at least your telling of them has had a positive affect on the world.

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        • Sweetness to you, my friend. You know all about hard times. your story is so different from mine you battled through some of the most profound grief in such a short period of time. Chris is a grief counselor, so I kind of am a sideways expert on knowing what you went through. You are just as strong and always put a smile on my face.

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  103. Wow! What a story! I am so glad that you have made it through those horrible time and see a complete healing in your future. I have several other friends battling Lyme also. You’re all in my prayers.

    The thing that amazes me the most…even though it attacked your eyes, you haven’t let that stop your photography or love of it. This is an inspiration to me. I have had visual impairments since I was a little girl. As I am aging, they are getting worse. In addition to that, my hands are shaky, too. I don’t want to give up my photography and art. Folks like you that have these battles and carry on in spite of them help me to fight on, too. Thank you!

    Have a blessed day. 🙂

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      • I do have a remote (somewhere!). It works great for when I am using the tripod, but a lot of the things that I want to photograph, I can’t use the tripod. I don’t know how to overcome the shaking in those instances. I could put the camera down on the ground for some shots, maybe, and use the remote, but I’d never be able to get down there to see what is actually in frame. 🙂 Have a blessed day!

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        • I don’t like using a tripod either. Have you ever tried a monopod? They will stabilize and are a lot easier to use. They can even double as a walking stick. That may help just enough. Just a thought. I want you to still be able to have fun with photography. Depending on mobile you are, there are also some small portable chairs you can buy and the monopod between your legs and being lower to ground may stabilize you a bit too.

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          • I have wondered how a monopod would work. I guess I just can’t get my head around how something with only one leg would hold the camera steady. Still, it might be worth checking into. Thanks for the suggestion and for the link to the stool. That would probably be a very good thing to have. As it is, I squat down and have a very hard time standing back up. Have a great day. 🙂

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  104. What a story! I had no idea Lyme Disease can cause such devastation. Your photos are beautiful and your website especially helpful. So far I’ve enjoyed reading your black & white tips. Thank you!

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  105. Wow, you have been through a lot. So glad that you were able to push through and get the right care/ treatment. Also wonderful that you are connecting with people through your photography and lessons. Thank you.

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  108. Your blog is wonderful and I learned a lot reading it. Now I know who is Cee as I have seen some of my readers following you and joining a photo challenge etc. I wish you good health and no more emergencies!

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  109. Pingback: Guest Blogger: Cee’s Photography | Writing Natural

  110. I found your blog on redheadkelly for Lyme bloggers and was immediately drawn to your gorgeous photos.

    Wow, you’ve been through sooo much! I’m so sorry you’ve had to endure all of this. Lyme is such a crazy disease, isn’t it!?

    I hope and pray that you’re feeling better these days sweetie.

    XO

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  113. My goodness – what a horrifying story. My aunt died of complications from Lyme’s Disease many years ago and they had no idea what it was until almost the end. She was so full of life I still tear up trying to accept that she’s actually gone. I’m glad you are healing!

    I’m not a very good photographer – a good photo on my part is an accident! So I’m sure I’d lose any photo challenge – but I enjoy seeing the pictures other people take.

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    • I am so sorry your lost your sister due to Lymes. It is a devastating disease and hard to diagnose if you don’t catch it right away. Thanks for commenting. Oh Jan, play along, you might surprise yourself with my challenges. Your door challenges are pretty good.

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  114. Hi Cee, I saw your story, I just began medical Qigong 3 weeks ago. I see a 31st generation Shaolin Monk 3x week. How are you feeling now? I’m excited for this journey I am on, a journey back to health!

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    • It is always fun to meet someone who is studying qigong. Thanks so much for commenting. I’m feeling real good and am healthy. Still healing, but life is wonderful.

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      • That is so good you regained your health and you are healing the damage. I am blown away by this practice, right now the Monk does the energy work, he is a 31st generation Shaolin Monk, his energy is amazing! There are YouTube videos of him Master Shi De Shan. Have a wonderful Holiday!

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  115. I never noticed this page on your blog before. What a scary and yet inspiring story. I am glad to hear you are doing well. Just this month I was diagnosed with Lyme Disease too. My hands started to ache when I woke up in the mornings. I thought it was age, arthritis or a result of my new hobby of taking aerial classes. They did some tests and lyme came back positive. They are also sending me to a specialist to be tested for lupus. But, I am hopefully that is just a result off odd tests from the lyme. I can’t say I recalled any specifically bad tick bites but with a cat, dog and horse, there has been countless ticks found and discarded over the years. So, I guess I take the medicine and see what happens. So far I am doing fine and plan on resuming my aerial classes after I recover from surgery (just had a hysterectomy). I had never heard of Qigong until your site and just this last month my gym started offering classes in it. I was like, hey-Cee does that! I should try it. Hopefully they will still offer it when I am able to get active again in 5-8 weeks. Anyway, thanks for sharing your story. I wish you well into the new year:)

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    • You poor thing. I hope they caught it early enough to be treated. If your tests show positive, it most likely is recent enough. Please feel free to contact me if you have questions, or need a shoulder to lean on. Blessings to you. 😀

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      • They didn’t seem too worried so I hope it’s considered early. They continued on with my hysterectomy so it must not be too bad yet. I am on the meds and go back to see them in a few more weeks. I feel good, outside of the surgery recovery issues and my hands don’t ache as much. So…fingers crossed. Thank you so much for the offer. I know I have a ton of questions that pop through my head. Blessings to you this year too:)

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  117. Cee, it’s quite a coincident that I just read this page of your blog today, because my husband found out he has Rocky Mountain Spotted Fever, on top of his Lyme’s Disease and his diabetes. He is doing amazingly well right now but has battled all kinds of sicknesses in his life. Reading your story gave me hope and information I needed. I have always been intrigued by alternative schools of healing and have just finished several articles, because of my freelance writing job, on Ayurvedic, holistic, nutrition, homeopathic, and Chinese healing methods. Believe me, thanks to you, I will be studying more about these effective methods. I admire your strength and courage!

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    • I hope you husband heals well and fast. I know how devastating and dangerous lyme disease can be. Keep researching your alternative methods. Healing is possible. The alternative you heal slower, but it will be permanent and life changing. 😀

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  118. What an amazing story good grief, a miracle indeed. I am dumbfounded I never read your about page I was just drawn to your photograph which as you know I love. A few others kept posting about my world which I found interesting but I never knew where they came from. Love the fact you turned to Chinese medicine and now going towards spiritual healing. God has been very kind to you giving you more than he has taken away. 🌹

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  119. Hi sweetie, My sister has Lyme as well. She gave up on western Doctors and did what you did. She manages her’s very well and she is In TN. Her baby got it young at a camping trip, and now has side affects but they manage his as well. They both got bit by a tick. I pray for you and your healing to continue. I pray God perform his miracles on you. Look up drinking Organic Apple Cider Vinegar and mix it with a drink you love daily. It has wonderful healing. Bless you, Jackie

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  120. Oh yeah, the Universe had a few miracles lined up for me. I’m doing quite well. Hope your sister and baby continue to heal as welll. Thanks so much for stopping by.

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  122. I am lost for words. How horrible to have gone through so much. I really can’t imagine how you can get through something like this. I hear of people getting the disease frequently nowadays and that they are suffering from the effects. It destroys normal, every day life, pretty much. I just can’t help but wonder why this is happening in this day and age. Very scary stuff going on in this world of ours.

    So happy to know you are coming through and hopefully continue to improve every day. God bless you!

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  123. Hi Cee been following your blog and I think I knew you had Lyme Diese and I too have that wow you have a wonderful story glad you are sharing it. I too love photography and lost touch with it. When I had stroke 30 and not counting yes you have read that right. Lymee 🙂 well it is onward and upward for us. blessings and I will be in touch … you too if u can stop by … hope all is well.

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  124. What a fighter you must be, Cee. Having been through this much must have changed the way you view life. Glad to know you are doing better. We are quite fortunate here in Canada where we do not get handed a bill for our health care. I just can’t imagine someone having to leave a hospital for having no coverage. I read about people losing their homes to pay for health care. So sad.

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  125. Cee your story is so inspirational. Your Divine Purpose shows everyday with your enthusiasm for life. Keep up the great work dear one! You are admired by so many! xo

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  126. Hi Cee,
    I’m new to blogging and someone recommended your page to me as a way of doing challenges and connecting with other bloggers. The first thing I see when I came to your page is My Lyme Disease story. My heart skipped a beat! I’ve suffered terribly for 17 years with Lyme disease…hence the eason I am not working and keeping myself sane by learning to write a blog. I suffered heart failure and I too almost died from Lyme. It seems to have touched so many of us. I’ve just undergone stem cell treatment. I hope you are doing well. I just wanted to say Hi and that I truly understand.

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  127. You have really showed you will to live, Cee – very well done. I do understand, that you are going east to get more help. The west can keep the symptoms down, but not cure the disease. I didn’t have Lyme, I think, they found something else in this summer, but I do also work to recover after my 35 days at ICU and then into another department there.
    You are so strong Cee and I wish you all good.

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  128. I am pretty speechless, Cee. You have an incredible will to live. I hope that you will continue to get better and make the most out of life. Healthy people often don’t do that because they don’t know what they have is precious. Thanks for sharing your story.

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  132. You’ve been through the wringer and back again and then a few more times for good measure … I’m glad you found a path that works, and I’m glad you are doing better — whatever better is on a given day. Chronic Lyme’s disease had taken the life of a friend of mine just recently, and I am pretty sure contributed to the passing of a very dear friend some years back. There are many who are undiagnosed, not only in Lyme’s disease but with the many sneaky-symptoms-illnesses that do not pass the horse and zebra hooves test. I hope one day more will get help, and more holistically, sooner. Chronic illness and chronic pain are difficult. They also have the potential to render some of us clearer on what life can be, and how to make the most of it. You seem to be one of those who found much clarity. And that, already, is a gift. You got you some grit, girl!

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    • I have come full circle on life that is for sure. I’m back to feeling energized daily by just waking up and being alive. I’m starting to really feel the happiness and zest that all of life has to offer. I’m so sorry about your friends who have died from Lymes. I know it’s not an easy or painless death. I also realize I’ve blessed to be alive and love every minute of my life.

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      • Life is different for each of us, and all we can each do is make the best of every day we have. Challenges differ, but the ability to make life meaningful is universal, no matter one’s particular suffering. My friends had found meaning in their lives, and it is more than some people get to know how to do. I’m grateful to have learned my own share of tenderness. Here’s to life, lived one beautiful moment at a time. Glad you’re better!

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  134. What an inspiration you are, what a miracle God bestowed on you! I can’t believe I’m just now reading this as long as I have “known” you, I never knew this about you. Reading today’s story from Chris made me curious, so I read your story. I can’t believe they never found the tick or questioned you about whether you camped or whatever you did to get the tick bite. My boys used to play in the woods outside their granny’s house in east Texas, we have pulled off our share of ticks. How fortunate we are to have never (that I know of) contracted Lyme disease. I’m so sorry you did, sorry you went through everything you did, but happy you lived to tell the tale.

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  136. Pingback: My Coma Experience, Part 1 – Cee's Lipedema Sisterhood
  137. Pingback: My Coma Experience, Part 1 – Cee's Photo Challenges

  138. What an amazingly powerful story you have shared…I salute your fighting spirit and your incredible will! I was already in awe of your photos and now my admiration is a million times more. Hugs to you.

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  139. Just read this again, Cee. Absolutely amazing what you have come through. I’m curious about whether you started your blog during the period after your coma because you couldn’t pursue more physical pasttimes? So glad you and Chris are doing this…

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    • Yep. When I was forced to quit work (around the time I was diagnosed with Lyme Disease). I turned my interest in photography into my passion and daily hobby and yes, got an on line presence. It took a couple of years though to start my blog. 😀

      I am switching the coma articles to my sisterhood blog. I will continue reblogging to my photo blog. So yes, more to come.

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  144. This is an amazing story Cee. You have been to hell and returned to tell the story. An inspiration, surely, to anyone else facing such a life-threatening illness. Wonderful you had Chris, your Qigong healer, and other medics to give you the support you needed.

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My blog is my way of communication these days, comments are greatly appreciated. Thanks for stopping by to visit.

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