Back at work, I feel a little better physically. Ten hours of sleep last night helped. Seems I am always hungry for sleep. My hands are not as bad as they have been. Now my lower body has joined the chorus of myalgias. I'm riding the waves of phone calls, prior authorizations and paperwork that comprise my job. So far, so good. Blessings abound

I'm on Day 2 of another increase in the anti-yeast medication, Nystatin. I am up to one tablet four times a day after meals.  i'm having a few more carbs than the stricter parts of the diet dictate on the advice of my doctor. Last Friday I had six cute little bite size cupcakes and felt the effect of high sugar carbs: somebody turned up the gravity, my coordination went down by fifty percent and I hated myself for not having the will power to resist those tempting tidbits from Bite Me! Cupcakes.  It made me realize just how much sugar makes me suffer. The Lyme Whisperer tells me it is the yeasty beasties in my body that make me crave and succumb to carbs.  He assures me the cravings will get less and I will feel better. I'm already experiencing a pattern to these increases: One to three days of increasing fatigue and pain in my hands that is throbbing at its' worst.  Then the fatigue and fog clear and I feel back to baseline, which is not that great a baseline I am beginning to see.

Meanwhile, I eat chicken and  veggies and beef and veggies. Yogurt and blueberries and one fruit popsicle. Those keep me from aching worse and seem to be slowly starving off the simple celled organisms that control my cravings for carb rich foods.  I made Alfredo with spaghetti squash, chicken, and spinach the other night. It was great. Full of dairy, it's not something I'll be able to eat when being dosed with certain antibiotics, so I'll enjoy it for now.

For tonight I am sipping ginger tea, ignoring the pain in my hands as I type and boiling eggs to make egg salad for tomorrow's lunch. I'll mix it with baby kale and some cucumbers.  Maybe I'll bring one of the sprouted grain tortillas and roll it into one. But I know I do need to make something for lunch tomorrow. Taking care of my nourishment is more of a priority now. 

Blessings abound

   Twenty-seven years ago, at 1240pm I gave birth to my first son, Dylan. I cannot believe that much time has passed. He's living in Oregon with his wife. I miss them both, but of course I miss him more. I am proud of the sensitive, caring person he has become. I remember his big blue eyes and the smile he still has today. Happy Birthday, Dylan! Blessings abound and you are one of mine!

  Today was a better day.  I slept well last night and my sleep was not interrupted by dreams that I remember. I spoke with The Lyme Whisperer and we're bumping up the yeast medication in a small increment. He has encouraged me to not be too strict with the yeast diet yet, to continue working more with the bland part of Bland Diet. My heartburn is better. Obsessive Compulsive Me is arguing that I should just do it and not worry about the discomfort but Sensible Me is saying, eat better quality carbs and do what the doctor says. So I will. 

   Work was a little lighter today. The afternoon had some space within to deal with some prior authorizations that were pending renewal. And I wasn't feeling pressured. It was nice. Had some space in which I was able to chat with co-workers. It was nice.

   I think writing gave me some breathing room yesterday. Some much needed calm. And encouragement from people I've never met always helps. Thank you. 

Blessings abound

Last night I dreamed of Captiva, in Florida. I dreamed I was in the little cottages lining the beach. The whales were there, black firm mammals just under the surface, a delight to see. I was with friends from The Sanga. And I had a Tiger with a Capital T. The Tiger was quiet and seemed to get along with the beach life just fine. My friends told me I needed to get rid of The Tiger. My son, Beloved Firstborn was there in a kilt. And we were playing Role Playing Games and I was a Queen and had organized the games for my friends. And I had all kinds of friends. The Beach turned into a castle that linked to a subway. We slid down chutes and left clues for our comrades in the game to let them know we'd been there. And sometimes we would leave things in other places to throw the competing RPG participants off the scent. I fed them bread and cheese. Little girls were there being princesses and we ascended the mountain on a train. The craggy mountain tops had scrubby spruces on them, tagged for the people who would claim them as their trees for Christmas. Beloved First born in his kilt caught a trout. Boy Wonder appeared. And then they were gone. 

Soon I found myself in an old Vermont country store, the wide board wooden floors oiled to preserve them. We were in the basement and my friends were there. My father was there as was The Chief and Herbert.  They were telling me I had to kill The Tiger, that The Tiger would kill all that I loved. And one by one, my animal companions, Smokey the grey cat, Lora Bora and other animals I had known, came to me bloody and missing body parts. The women of Captiva were no help to me, they left as they were afraid of The Tiger. The men encouraged me to take the Tiger away, to kill The Tiger so that balance could be restored. I lured The Tiger into the open. Away we walked, The beautiful Tiger and me. And somehow I killed The Tiger, but I do not know how.  Through it all, I was the Queen and I was Beautiful.

Blessings abound

   Once again, I find myself investigating and refining my limited knowledge of who I am. For years I have had the diagnosis of Fibromyalgia and have accepted certain things ( fatigue, daily pain) as part of my life and something with which to work.  I remember when Fibromyalgia was a bit of a controversial diagnosis because it was best defined by the things it was not. The tests that denied the existence of other things defined the presence of Fibromyalgia. My doc trialed me through some tricyclic antidepressants and I found a way to live with the pain and discomfort. I worked, raised me kids and tried to be the best me I could be. That meant a responsible nurse, a loving mother who worked through her abuse issues and sought not to subject my children to the same treatment. That I lived with pain and tiredness was just a given.

   So here I am twenty years later. I still have pain and fatigue, though it feels as if the intensity has increased. I have been diagnosed with Chronic Lyme Disease, which according to the CDC and other medical authorities, does not exist. It, too, has been diagnosed by the tests that named what it is not.   Except there is one test that is felt to confirm Lyme. That is the Western Blot. According to the CDC criteria because I had an indeterminate Western blot, I do not have Lyme disease.  According to The Lyme Whisperer, a Lyme Literate MD ( LLMD), the symptoms I have and the number of positive bands on my Western Blot confirm that I have Chronic Lyme Disease. There are two incidents of Herxe reactions in my past with Rifampin and Doxycycline that also seem to verify the diagnosis of Chronic Lyme Disease.  I have been told by Lyme Whisperer that he can help me. That there are yeast in my digestive tract that must be dealt with and little spirochetes penetrating the tissues of my body that can be dealt with successfully. That it could take years, but that life could be better. 

   So who am I if I am not Fibromyalgia and instead Chronic Lyme?

   Here is who I am not:

   I am not the diseases themselves. Fibromyalgia and Chronic Lyme Disease are names for a collection of symptoms that describe how my body is. They do not define the kindness in my person, my abruptness with others when they challenge me or the wonder I feel at things in nature. Fibromyalgia and Chronic Lyme Disease are not the person who spends time on the phone with a frightened elder and then her daughter trying to make for a safer home and better health for the elder. They are not the person who longs for skin to skin cuddling with the man I love and who loves me, who has taught me that not all touch is sexual touch.  Those diagnoses are not the woman who tries to better understand how to be compassionate, how to not take things personally when dealing with folks on the phone less than satisfied with what I can offer them. It is not the little girl who is afraid that by embracing treatment for a controversial diagnosis, she will lose her supportive physician. It is not the woman who wants to know what it would be like to live without chronic pain. She is the one who is willing to follow the diet, make the changes and take the low dose antibiotics that can mean the difference between get-up-go-to-work-go-home-eat-go to-bed-get-up-go-to-work and get-up-go-to-work-have-some-fun-see-some-beauty-go-to-bed. Maybe even give me the chance to experience some things I can't even imagine. 

  I realize that I have my flaws, but I am still a loving, giving person who tries really hard to be a better person. Maybe being sick has contributed to my feelings of not being enough. Maybe that will still be there after treatment but the only way to find out is to trust I am doing the right thing and continue on this path before me. I am strong, I have support, I can do this. 

Blessings abound

So I miscounted. Today is the conclusion of Day 4. Amazing the things that have sugar added to them! Shopping in Costco was interesting, as always. I hate the size and sheer amount of merchandise in Costco. A lot of items I would usually purchase are now verboten. Instead, I stocked up on meat and fish. The asparagus was a little on the old looking side, but I bought it anyway. I bought more meat there than I usually do. My preference is to buy local meat, dairy and produce, but we're low on the meat in the freezer, so I purchased some steaks and pork tenderloin;chicken thighs, salmon and ahi tuna. A little haddock. The big size of hummus. Afterwards, my friend, Ceredwyn and I went for some lunch. Steak and snow peas. It was good. I had kept my second cup of coffee in reserve for after Costco and it went down so smoothly. I really enjoyed it. 

I am exhausted and my skin has started to itch. I'm assured by my friends that this is not unusual for starting Nystatin. I expect that my doc will increase the Nystatin after I report in to him on Monday. I am so tired, my tongue aches. Good night. Blessings abound

Today is the second day of No Yeast Bland Diet. I'm taking the Nystatin as ordered. I've been obeying the diet rules for the most part, though have not cut everything out, which is what my doc told me to do. So I've had a little fruit. I'm eating peanuts and cashews to get myself through the lumpy, bumpy spots of hunger that seem to occur every couple of hours after I eat a "main meal."

 I am so hungry I am ready to gnaw off my arm. Or perhaps a fleshy thigh.  

My co-workers are getting ready to start a " Biggest Loser" contest here at work. I have decided not to participate because I have enough on my plate without the pressure of "trying" to lose weight. They're not due to start the contest until March 30. Today they were indulging in candy after lunch. The coconut M&M's sounded particularly appealing. So I've been doing my work, drinking water and watching the clock. I don't dare go out to the front office where they have their own stash of candy. And the counter off the nurse's station is littered with pre-Easter treats. Haven't these people heard of giving up sweets for Lent?  Nonetheless, the sweets that help us get through the day are ripe for the taking and I want them in the worst way. However, I want to be healthy more than I want the contraband. So I resist. Right now the language of< I choose not to> eludes me.

I am also butt-ugly tired. I've been in bed and asleep by eight thirty the last two nights. I'm looking forward to sleeping in over the weekend. At least sleep will take care of the hunger cravings. An uncomfortable discovery this afternoon has been the information that three grapefruit segments combined with nuts cause heartburn. The nuts alone haven't done that so I'm blaming the grapefruit. And when I called Erik to ask him about supper, I gave him suggestions for three veggies to stir fry together. And after he reminded me of the one that was on the Bland diet list, I revised it and had him leave out the onions but add spinach. Too many veggies, he started to complain. I reminded him that I am not able to eat like him anymore and that I need those little green gems to keep me from chewing off one of our limbs. Preferably his.

I'm white-knuckling my way through this. I can do this. I've lived twenty years or more with fibro and no real treatment. I can make it through a treatment that promises more than the energy to go to work and go home to sleep.

Blessings abound.

Yesterday we went over the blood work I had taken after my last visit. And it's official: I have Lyme disease. I missed meeting the CDC's criteria for Lyme by one band on the Western blot. But combined with my symptoms, we've begun treatment. That means getting the yeast in my body out of my system. So I've started a yeast-free, sugar-free, alcohol-free diet. And started Nystatin tablets to kill the beasties. And because I have heart-burn, I am also on a bland diet. I cut my coffee back from four mugs to one today. No headache, but overwhelming fatique.  It will be interesting to go to work tomorrow and see how I function. Because coffee has been a mainstay for me. I particularly enjoy adding espresso shots to regular coffee. No more of that. 

Good night.
Blessings abound. This could be one, too, in disguise. 

W. died. Two years younger than myself, he was sometimes a patient of mine. When I was working Home Health in the early nineties, he  required IV antibiotics after surgery. I spent a lot of time in his home, getting to know him and his wife. I liked them both. What was not to like? Relatively young, robust except for the digestive problem that was going to eventually sap his strength. He was also an alcoholic.  His pain fed his addiction fed his pain fed his disease. By the time he died, he was thin, on oxygen from the lung cancer caused by his smoking.  By the time he died, I had known him as part of the practice for which I did triage. He was personable. I always enjoyed seeing him or talking with him. I mourned his deterioration. Today I am sad that he is gone from this world. He is one of many for whom I wish life was better. 

Blessings abound