24 Sep
Butterfly where might you land
On top of the Zinnia
Or in the palm of my hand
Will you come to the garden?
We planted just for you
Drinking sweet nectar
Dancing the way you do
There are all your favorite flowers
We’ll watch you for hours
‘til the sun goes down
When you are not to be found
These butterflies didn’t come for flowers. They have come for the sap seeping from a wounded Oak in my yard.
Keeper of dogkisses
7 Sep
All my tears may account for years but when I look at these photos, I can see that it was only days ago that I was smiling. I smiled yesterday when I received a surprise phone call from a friend.
Yesterday brought a resolution to a recent crisis, but the aftermath of having gone through it has triggered an acute episode of severe depression.
Depression is something I’ve suffered with for most of my adult life but most certainly I don’t feel this bad all the time. I couldn’t take it if I did.
I also have PTSD. I am sure this is the root of the depression I’m experiencing. I had terrible nightmares after the resolution. The crisis was too familiar, which is all I’m able to write at this time.
I’m sharing these photos because the moments in time when they were taken, which was not so long ago, I was okay. Okay meaning able to smile, eat, enjoy parts of my life and sleep.
I have laughed before and I will laugh again — maybe today but until then, I hope you like the pictures.
Thank you for visiting my blog.
campdance
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22 Aug
Image via Wikipedia
The first thing that comes to mind when I think about fibromyalgia is that it’s been a long road of pain and fatigue that gradually worsened over time. I don’t fully understand when I hear that it isn’t a progressive illness or disease, since over the past seven years I’ve gone from saying ouch while bending over in the garden, to having many days (possibly years worth) of being completely debilitated by pain and fatigue.
Is it a disease or a syndrome? Illness, disease or syndrome? I think it may be all of those.
Fibromyalgia is a pain filled life changing experience.
Fibromyalgia is often misunderstood, stigmatized and people who suffer from it are wrongly judged.
Sometimes I feel like I understand what I’ve learned about fibromyalgia, particularly that it’s a central nervous system disorder, and other times, when I’m deep in the throws of severe pain or terrible fatigue, I question what I thought I understood. During these times, I wonder if the doctors have missed a rare disorder or another disease more understood than fibromyalgia is.
Some days I fully accept it and other days I wonder if it even exist, and again, wonder if the doctors have simply missed something that would clearly explain all the pain, the fatigue and the myriad of other symptoms I have.
I’m afraid of fibromyalgia. Not all the time but some of the time. I’m afraid of getting older and adding an aging body to an already painful weak one.
I believe we are human. I do not believe that pain, sickness, illness and diseases are a result of karma, sin or character issues. I believe humans are susceptible to diseases because we are human.
Disease can be caused by chronic stress but this cause doesn’t make it any less real.
I believe fibromyalgia is a medical entity that causes great suffering and drastically changes lives.
Fibromyalgia is not the same for everyone.
Treatment for fibromyalgia is not the same for everyone.
The view that fibromyalgia is a central nervous system disorder, Central Sensitivity Syndrome, (CSS), makes the most sense to me.
The first time I heard about CSS was when I met with a Rheumatologist, Dr. John B. Winfield at UNC-Hospitals in Chapel Hill, North Carolina. I had an appointment with him the day before he left his position and moved to the mountains. I wouldn’t have been able to see him again anyway because UNC-Hospitals would not allow him to see a patient for fibromyalgia more than once. (Politics…) I don’t think this helped him help his patients.
As I write, UNC-Hospitals doesn’t have a doctor who specifically treats fibromyalgia. They have the department of Rheumatology, but they refer fibromyalgia patients to a family physician who often refers the patient to a Rheumatologist.
My visit with Dr. John B. Winfield remains one of the best doctor’s visits I’ve ever had. I spent over two hours with Dr. Winfield that day. He told me I would see his research in a few years but at the time that seemed like forever. Now I see his research.
Finally, I hear doctors, or at least mine, talk about CSS. Finally.
“Central sensitivity syndromes: a new paradigm…” Yunus MB, (PubMed.gov)
Excerpts from an abstract summary of the article (above link) —
“Such terms as “medically unexplained symptoms,” “somatization,” “somatization disorder,” and “functional somatic syndromes” in the context of CSS should be abandoned. Given current scientific knowledge, the concept of disease-illness dualism has no rational basis and impedes proper patient-physician communication, resulting in poor patient care.
–“The disease-illness, as well as organic/non-organic dichotomy, should be rejected.”
After having caught up a bit on the latest articles, which I find to be tiring to my brain, I’m somewhat confused.
I understand that Chronic Fatigue Syndrome is part of fibromyalgia. I guess you can have one without the other, but I’m not sure. I was diagnosed with CFS before fibromyalgia.
I had Lyme’s Disease in 2003, which caused my joints to protrude and hurt very badly. They got better except bending over never did stop hurting.
I had Rocky Mountain Spotted Fever in 2005. I didn’t get treatment for six or seven weeks. My wrists joints were protruding again. I was severely ill. I was finally diagnosed and took Doxycycline.
The fatigue continued. I began to have severe low back pain. Neither went away. I was referred to immunologists. They said I had Post Infectious Disease Syndrome and wrote on my records that I have CFS as a result of RMSF. They said the disease stayed in my system so long that it caused a systemic infection that could last, possibly, the rest of my life.
I saw Dr. John B. Winfield the next summer, in June, 2006, who diagnosed me with Classic Fibromyalgia.
He spent a lot of time with me, several hours, educating me about fibromyalgia and talking with me about how to live with the stigma around the diagnosis, particularly as it is considered an invisible illness.
I don’t know where to draw the line, or if there is one, between fibromyalgia and Chronic Fatigue Syndrome.
I have all the symptoms of fibromyalgia and all the symptoms of Chronic Fagtigue Syndrome.
I could benefit from another two hour visit with Dr. Winfield. He did mention that me doing things like taking trips to the mountains, along with a few other activities I shared with him that I enjoy doing, would be good for fibromyalgia.
Update on August, 27, 2010 —
Please see the comments on this post for several excellent links (from George) for recent new findings/ research about Chronic Fatigue Syndrome.
Thank you George.
16 Aug
Mystical Mountains
A magical view of those rolling green hills
My beloved 4-legged guardian and I walk barefoot
Where the Sacred Oats fall… Crows come to call
We danced at night.
Below are some of my journal entries during my camping trip. They speak mostly to pain and challenges. I’m a little surprised. I did actually enjoy myself, at times, but apparently there was more pain and hard times than I realized. I do love those hills. I loved some parts of the trip. Still, these entries mostly reflect how hard the trip was for me.
–Today we are in the mountains. Many things occurred over the past few days as I was getting ready to go camping that I didn’t like. But I’m here. A moment alone now as my son, a man now, and our two young friends are with me. Of course our four-legged are here too. Well, my moment is over. Son is back.
–Preparing for this trip was extremely hard. Bending over a lot while packing caused severe lower back pain for me. I had to walk through the fatigue. I had to dig deep inside for the will or whatever it was that I had to have, determination I guess, to keep on packing despite severe pain and fatigue.
–I fell. Slid down a moss covered set of stone steps. No bruises.
–Sacred oats gone bad. I am not eating from that bowl.
–I’ve been terribly sick and pretty much having to go at things as usual without much help. It’s been hard. I had to do most of the work preparing this trip. My son isn’t doing well.
–I’m exhausted. Completely. My pain levels are off the scale.
–It’s nice writing out here. My dogs are lying next to me. The young people went on bicycle rides. It’s very quiet.
–I love being here.
–Butterflies are everywhere.
–I think the sacred oats that went bad have left us now. I hope.
–They’re back.
–Well, maybe those bad oats didn’t leave us.
–My pain has hit hard sitting here writing. I’ll lie down soon.
–God I’m tired!
–My son is having a psychotic episode.
–My intestines hurt like hell.
–I’m watching the last log burn. Now this wood, well, it’s amazing!
With all the pain and frustration that came with that trip, I managed to get some time out. I needed to get away from flat land. I needed to go where the hills surround me. I needed the cool breeze that always travels through those rolling green mountains.
9 Aug
Dear Dogkisses’s Blog,
I’m writing to say how much I’ve grown to respect you since you were born. I admit that you were an accident and I didn’t have a plan as to how I would care for you.
I remember what fun it was the first time I clicked publish. The life in you began to shine.
Unfortunately, I don’t know your exact birthday, but it was about one year ago. I’m sure I could find it somewhere on your dashboard, but I changed the dates of my first several posts. I can’t believe I trashed the “Hello World.” I’m sorry. I thought it was terrible writing, but now I can see where it would be cool if I could see your first appearance.
I realize you are just a blog. I know I can do almost anything I want to with you. What I failed to realize when you were younger is that how I treat you has an effect on others. The blogosphere doesn’t revolve around you. You live within it.
I’ve been working on cleaning up your archives. Not only did I click publish too soon, without doing a spell check, much less a full edit, I also failed to work harder at finding the right words, or better words than some of the ones I chose to use.
I should have watched more videos and read more about blogs before giving birth to you, but please know I’m trying to learn and do better in creating you and your, um… online presence.
From this day forward I will have a greater respect for you and your capabilities.
Love,
Your maker and caretaker.
6 Aug
I’d been debilitated by a muscle spasm for five days before going to my doctor yesterday. I would have gone to see him sooner but I didn’t have anyone to drive me and I simply couldn’t drive that far. I’d taken my medication for breakthrough pain and was worried about not having it later in the month. I told him I’d been in so much pain that I couldn’t think without medication to relieve it.
“I don’t know if the spasm is breakthrough pain or a part of fibromyalgia or if it’s unrelated,” I told my doctor.
“Was it a real spasm?” he asked. Sometimes he asks geeky questions.
“Yes,” I answered confidently.
“It isn’t ideal that you took your breakthrough medicine for a muscle spasm, but at that point, you really didn’t have a choice.” He wrote something on his notepad.
Now I wished I’d called his office when the spasm started. He wrote me a prescription for magnesium mixed with a chemical in aspirin. He said people find relief for migraines with the medication and that it may help muscles spasms. He said more about magnesium, but I can’t remember! He also told me to apply wet heat, which I could have done and didn’t. Again, I should have called his office five days earlier. He didn’t mention replacing my breakthrough medication. I don’t like having to ask for extra pain medicine so I didn’t mention it either.
I didn’t have much in me so to speak. It took strength for me to talk loud enough to be heard, much less communicate any concerns or other issues I was having. I didn’t tell him my bladder was still hurting but I was tired. I’d been hurting for days and it wore me out mentally and physically. Sometimes I feel like giving up. I feel like there is no hope. That no matter what, pain will be part of my daily life.
“You know what I told you about the central sensitivity…” he said. I nodded yes. I can’t remember his exact words. He spoke to the pain from the view that fibromyalgia is a central nervous system disorder, Central Sensitivity Syndrome (CSS), which I think suggest that the level of pain I’ve experienced from the muscle spasm is part of fibromyalgia, but not necessarily a symptom.
I had a college mentor who told me many times, “If you can’t explain something then you don’t understand it.” I guess I don’t fully understand CSS. I understand the general concept, which is enough to know that people with fibromyalgia experience more pain from stimuli, such as a muscle spasm, than do people who do not have fibromyalgia.
I remember my good doctor saying something to the effect of the spasm having caused a blast of pain from my brain that I felt all over my body. He said that would explain why I was feeling so crappy. I’d definitely had a blast of pain!
“Do you have any patients who have severe fibromyalgia, who you are absolutely sure they have it, without a doubt, who gets well?” I asked him.
His answer, which was basically yes, was somewhat surprising to me. I may have also felt a glimmer of hope, but it would have taken a lot to get me out of the despondent state of mind I’ve been in for the past week or more. Too bad because he’s a good doctor with a sense of humor. If I’m quiet then so is he. If I’m in a lighter mood then he’ll tell me a joke, usually a geeky one, but sometimes that’s what makes it funny.
“Yes,” and he turned around in his chair to face me. “There are some people who do get better. They are people who follow a strict routine of exercise. They practice stretches throughout the day every day. They follow a strict diet. They have very strict schedules and that is all they do. These are people who have nothing else going on and devote all their time to practicing these things. The people who are more likely to get well from fibromyalgia are people who have nothing else,” and he waved his hands in the air for an added effect, “nothing else going on — at all — that gets in their way. They are people with nothing else but time.”
Could I be that person I wondered the rest of the day. I’ve got the time. I’ve also got a lot going on.
This morning I visited a blog with the most beautiful photos of places where people were fly fishing. I’d like to do that, even if I didn’t catch a fish. I wish I could go to paradise, where I would have nothing else but time.
Image of clock by Leslie, at IconDoIt, the blog. Copyrights apply.
5 Aug
Several days ago I’d placed the bill in the center of my desk, clearly visible without any surrounding clutter. August 6th. I had the number planted in my brain. No biggie. All I have to do is make a quick call to my agent’s office and the bill is paid.
Apparently though, it is a biggie. Everything is lately. I can’t concentrate on one subject very long, particularly bills. The act of paying them makes my gut get all twisted and gives me anxiety. It also makes my brain feel like it’s being squeezed. I get nauseated and dizzy. I go lie down and think maybe in a few minutes I’ll feel better and can pay the bill.
The best of a week passed and I kept trying to pay it. I did call once and for the first time the number was busy. I called back and busy again. I went back to bed for a little while. I don’t like going to bed during the day. At least not regularly when it’s because I’m sick.
I like lying in bed on a cold winter’s day reading a good book. I like to take naps when it rains or an afternoon spent enjoying the sweet company of love, but I don’t like this business of having to lie down every little while because I’m too tired to do things and too tired to think. I have things I both need and want to do.
I woke up with anxiety today. I sat down at my desk immediately realizing it was the fifth. I remembered I needed to pay the bill. While having my coffee I paid two other bills. Finally, I saw the auto bill.
too tired but not too late
I’ve been a customer there for over a decade. I remember when I first went to their office, which is in the mountains of western North Carolina. One thing I loved about living there was that all the businesses had flower gardens outside their offices. I also loved the old beautifully restored houses, some of which were commercial property.
Today the agent answered when I called. I usually talk to his secretary. He’s a nice man. I told him I needed to pay my bill. I made a remark about me possibly being the only customer who waits until the last minute.
He laughed. “Oh no,” he said politely. “Lots of people wait,” and I heard him keying in my name on his computer. “Yes,” he said. “You have until,” he paused and laughed again, but in a nice way, ” until today.”
“Yes, I know,” I answered and laughed too. Why not laugh? I mean partly out of relief because for one thing, it doesn’t say the sixth. It’s the fifth and that is today!
“Well, you’re just in time,” he said.
I couldn’t believe he said it! That’s my line. “Exactly,” I said to him. I was happy he saw it my way.
31 Jul
“I think dogs are the most amazing creatures; they give unconditional love. For me they are the role model for being alive.” ~Gilda Radner
“What’s your pain level?” the nurse asked.
“Nine,” I quickly remarked. I was too tired to say nine and a half and would have said ten, but that’s reserved for pain that sends a person to an emergency room. If I hadn’t had a doctor see, then it would have been an emergency.
My blood pressure was high, which for me means severe pain. The doctor said I needed another round of the horse pills I had taken.
“I don’t know why I feel this bad,” I told my good friend after the appointment. “It’s a simple bladder infection,” I said, but my whole body ached.
“You started out on the edge of good health,” he gently responded. “Now your body has to use all it’s energy to fight the infection.”
My friend didn’t have much time to spare, but he made me a wonderful egg sandwich. It was no ordinary egg sandwich. It came with such tenderness in his heart, that I felt like the most special person to him in the world. That right there is healing.
I went home and straight to bed. My beloved canine companion, little Ruthie, woke me with a gentle kiss on my arm around seven o’clock. She knows exactly when dinner time arrives. Ruthie is such a tender dog. She always asks for what she needs in the sweetest little ways.
Our other dog heard me stirring around and came into the bedroom. They both wanted to eat and go outside.
The first thing Ruthie did when we walked outside was spot a rabbit. Holding her back was hard and it made me irritable. I raised my voice, which made me feel guilty, but I knew I couldn’t take being pulled by her. I brought them back inside, fed them and returned to bed. They both settled on the floor beside my bed, like little angels watching over me.
The dogs don’t sleep in their usual places when I’m sick. They are more protective of me. They’re vigilant little guardians.
Living with chronic pain and exhaustion is hard. Getting sick on top of being sick is depressing.
I decided to rent movies to make it through the next dose of horse pills. I hoped depression wouldn’t get the best of me, but then I have these little creatures walking on four legs. They are the best medicine in the world! Dogs really do rule.
Beautiful Free
Hello Again, Forever.
Michelle writes about her life, her journey with chronic pain and illness, healing and hope, and a personal account of how the love of dogs helps along the way. She has traveled the mental healthcare system with her adult son, who has inspired integrating holistic healthcare. Michelle finds healing in nature, is in love with the wild things, her family and a dog, of course.
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