Journey to a Contented Life

Please check out my partner's blog, Journey to a Contented Life. She is writing some wonderful vignettes on what she went through while I was so sick. Please note, she is the writer in the family and will truly inspire and amaze you.

How do I feel?

How do you feel? Is the most common question I get from my Doctor these days. I find it hard to describe how I really feel. I've had 25 years of not feeling well and disassociating from how I feel. Now to try and explain how I'm feeling and what the differences are ... that's not so easy. All I know is that I'm feeling better and better all the time. Yes, I still get tired. No, I still can't move the way I'd like to. One thing from having been sick and my legs have really taken a beating...and I have Edema in my right leg...so yes that still swells a times.

I'm finding it hard to describe how I feel, let alone explain, do I feel better taking this medicine or did I feel better not taking it. Talking about how I feel and actually acknowledging how I feel is a totally new experience for me. I've learned to ignore how I feel, because I never felt well.

Talking to Chris last night and I was telling her that it is hard for me to dream about the future, because I've had so long of not dreaming because when I did I only had pain and frustration of not being able to move. She was so gentle and just told me...it's OK. I'm still not used to having a future that looks good and bright and healthy. My future just might just be looking up.

Victories and Defeat

This past weekend was full of victories and defeats. Chris and I planned a day at the beach and a boat excursion for whale watching. We both love to be on the water and what better place than the Pacific Ocean. We booked a two hour trip. I could not go. I couldn't get on the boat. It was just a little tour boat and I had to really step up and over the side (which I was unable to do). So with plenty of tears of defeat, the boat sailed with us.

For the past 25 years I've not been able to bend my knees much. And I one of my meds is making me swell more than usual. So for me to bend my leg enough to get on the boat was impossible. I think 25 years of frustration came out and I just cried for awhile on the beach. The day was not a total loss. We were driving back to Lincoln City and I saw the biggest display of kites. It was fun. Chris and I just watched the kites and beach for quite awhile. I of course took plenty of photographs.

In fact we were so inspired we decided to drive back to the beach the next day. We live about 2 hours away. The victory part of the weekend is ... I've not had that kind of energy in years. I was actually able to drive to the beach and back and enjoy my time at the beach. Got plenty of photographs, spend some wonderful time with Chris and still have energy left when I got home.

The Long Walk

This is a vignette that my Partner wrote about how she felt the first time I was hospitalized. You can view it on her Redbubble site. She will be adding a lot more vinette's to her site so you may want to book mark it.

Here is The Long Walk

The elevator hisses shut behind me. Ahead of me lays the terrifying walk to those doors with the ominous sign: Restricted Area. Behind those doors lie the mostly dead, the partially alive, and their loved ones who keep silent, tearful vigil. The Intensive Care Unit.

I am one of those keeping vigil.

Each step comes in slow motion. I hate this walk and the questions it brings. Will she still be there, clinging to life, tied to so many machines and tubes? Or will I round the corner to see her door open, room empty, her body in the morgue waiting for me to dispose of it? Will she have slipped away, alone, desperate, unaccompanied into that dark mystery of death we all fear so much? What if she gave up and left while I had gone home for a troubled sleep and a change of clothes? What if, during my long drive back to the hospital, they tried to call
me, to tell me to hurry, that there wasn’t anything more they could do and it was time to say goodbye, but they couldn’t reach me and she died alone? Would she know that I didn’t want it that way? That I wanted one more chance to tell her that I loved her and that my life would end when she left? That I tried the very best I could to keep her alive?

My footsteps echo in the deserted hallway. Left turn, five steps, right turn, thirty steps. Just one more left turn and I would have my answer. My head is screaming inside. I can’t breathe.

No, no, turn back the clock. This can’t be real. This isn’t happening to us.

Please let her be alive. Give us one more day together. Just one more day.
Please?

Left turn. For today, the answer is….

Energy Medicine

I did something a few weeks ago that is scary in today's economic age. I quit my job. This decision came about because of my recent diagnosis of Lyme Disease. From the best I can figure out I've had it for almost half of my life ... Chris and I decided since I've not really had my own life for 25 years, I should take some time to discover who I am and what I really want to do. There are two areas I want to explore my artsy side and my spirituality.

On the artsy side, I've always been interested in photography and always had some kind of camera, but the last couple of years I've gotten into macro photography. It is really teaching me about the miraculous beauty of life. I've also have a Cee's Photo Blog http://ceesphotoart.blogspot.com/ as well where you can see what I'm doing with my photography.

Since my 2001 hospitalization I've been on a spiritual journey. And part of that journey has led me to energy medicine. I've met some fantastic healers over the past few years. I've also discovered I've been a healer my entire lifetime. I've discovered that people usually heal faster from an illness or injury, or they simply don't get sick around me. I'm discovering it's my energy and ability to not see illness that allow others heal. I've also discovered that everyone is a healer. Just think, what is the first thing you do when you cut your finger. You hold it. That's the first step of energy healing. By holding your finger, you hand is starting the healing process. You keep the natural energy flowing through the injury and your own energy field begins the healing process. Energy Medicine a fascinating field and can enhance anyone's life.

Kathy Chambers is a wonderful Energy Medicine Practitioner here in Portland, Oregon, see her website at http://www.awakenhealing.com/. She has studied with Donna Eden for years,k see her webside at http://www.innersource.net/.

Loss of Mobility

I've never liked doctors, and don't have a history of going to them. So 25 years ago when my symptoms first appeared, I didn't go to a doctor. When I was in my early twenties I was thin, I ran, danced and roller-skated. I also had a social life and was always busy doing something. Looking back on it now, I suddenly gained lots of weight and soon after I lost a lot of my physical mobility.

I can vividly remember that I lived in an apartment that was on the 4th floor and I'd run up and down the stairs with no problem. Then one day I started using the elevator to go up to my floor, and would just gingerly walk downstairs. Then soon after that I'd use the elevator to go down as well. Then I couldn't get up off my couch. I had to hold on to the arm and pull myself up. This all took place in the matter of weeks. I never felt sick or thought it was something real, and hating doctors as I did, I just coped with my new body. I remember watching people stand up from a sitting position and just studying them and wondering why I forgot how to stand up. Anyhow, here I am 25 years later getting some answers.

Since my last hospitalization in 2005, I've had high blood sugar and edema in my legs, which has forced me to see a doctor weekly. For the past couple of years, I've been going to a naturopath who is wonderful. I've slowly began to open up to her. She knows my history of me being in coma and multiple organ failure.

A couple months ago I told her that one day I could walk stairs and get up off a couch and the next I couldn't, and she stopped me mid-way through and said, "I think you may have Lyme Disease". She then said I may have to be on antibiotics for the rest of my life, but I would be healthy. I'm not even sure of the words she used, but that was the essence. My partner of 20 years, Chris, was with me that day and as we walked out of my doctor’s office we just looked at each other and said is that all I have? Could it be this simple?

We were speechless. We've didn't realize how much fear we'd both been living in that I'd get sick again, with no answers as to why. When I first got sick in 2001, I was called a miracle. I was hospitalized for five months. Chris was told I'd die the first night. I had literally no major symptoms other than an stomach flu. I stopped breathing on the way to the hospital and by the time I got there I was bleeding internally and had a blood sugar of 1400. My pancreas shut down. My kidneys shut down and my respiratory system shut down. Then things got complicated after that. I was in a coma for 40 days.

Part of the complications were that I had a systemic yeast infection and I was put on high powered antibiotics. It was the antibiotics, I believe, that saved my life and gave my body the ability to heal. My blood sugar went back to normal. I could breathe on my own and my kidneys began to function normally again. It took me a couple of years to recover fully. In my opinion, the antibiotics allowed the Lyme Disease to be minimized for awhile.

I'm not taking Lyme Disease lightly. I should have been dead a few times over. I'm just very grateful I don't have to live with the fear of dropping dead for no apparent reason. I can get control back in my life. I'm starting to get some of my mobility back. I've spent half of my life with Lyme Disease running wild in my body ... And only a couple of months of treatment. I've got a wonderful journey ahead of me.
Cee

Lyme Sentinel Blog

Hi All,
Thanks for your support. My blog has already been added to Lyme Sentinel at .LymeSentinel.blogspot.com. You can find a link under Lymes Links on my side bar.

More of my story tomorrow.

Thanks.
Cee

Welcome!!

I've recently been diagnosed with Lyme Disease and will most likely be on antibiotics for the rest of my life. My journey to this diagnosis has taken 25 years to discover. My body has taken a beating and it's fun to start feeling healthy again and have some energy. I actually wake up with a smile and look forward to a new day.

From my understanding Lyme Disease is not easy to diagnose, especially since I didn't live in an area where it is more prevalent. From the best of my knowledge I got it when I lived in Colorado (I currently live in Oregon). From my research there were only 2-4 cases of Lyme Disease reported In Colorado. So 25 years ago, when my symptoms first popped up, it is easy to understand why I was never diagnosed.

In 2001, I ended up in the hospital with my kidneys, pancreas and respiratory system shutting down and had multiple infections. I was a coma for 40 days and rehab for 4 months afterwards. I couldn't work for nearly two years. The biggest mystery was that none of my team of doctors could figure out why I got so sick. They only knew how to keep me alive and knock down the infections. Could they say I was healed? No. Could they say it won't happen again? No. And then in 2005, once again I was hospitalized with a relapse.

I know I have been through a rough 25 years of mysterious illnesses and symptoms and I'm sure I'm not the only person who has a story to tell. I'd like to share my story and hear from others as well.

Cee