How Lyme Works

I found an interesting clip today while browsing youtube. This video does a great job of explaining how lyme spirochetes operate and how they compromise the body by confusing the immune system. I was also very impressed that they listed the different ways in which the infection is spread. There is a common misconception that it is contracted only from tick bites, and most people - doctors included - focus only on that. As for the treatment options at the end....I found them a bit lacking in specific information, though I do agree that the disease, it's co-infections and the toxins they all leave behind need to be considered and treated according to each one's effect on the body.


http://youtube.com/watch?v=RTiWfyrNBwA&feature=related

Reprieve

I am feeling very close to human today as I have since Friday. I did not post for a while due to strong Herx reactions and the resulting depression. I plan to do as much as possible in the next few days to a week before starting my Silver regimen.

Today I harvested one of my watermelons.

In my excitement I neglected to check it properly to make sure it was ripe, so it was a bit of a disappointment when I opened it up.

But I cut out the pink flesh and am eating it now....it's not so bad :) Next time Ill try to restrain myself. lol

Blaahhhhh

I've been feeling a bit of depression lately. I increased my dose of Samento the other day and the Herx reactions have left me weak and listless. Things - like my disability paperwork etc - aren't getting done and I feel I'm falling further behind. It is a real struggle to even get myself vertical. I'm doing my best though, and calling my friends like crazy just to stay sane and not be consumed by feelings of hopelessness.

Granola bars

I was very weak yesterday but did manage to summon the strength to try out a granola bar recipe I found at: http://www.joyfulabode.com/blog
I had to modify it a bit as I didn't have all the ingredients. It turned out very well. I'm including photos and the recipe. Enjoy :-)

Heat oven to 400 degrees F.

3.5 cups oats
1 cup coconut flakes
3/4 cup nuts (I used almonds and walnuts)
1/2 cup brown sugar
1/3 cup honey
3 tbsp butter
2 tsp vanilla extract
1/2 tsp salt
1 cup dried fruit (I used a combo of raisins and cranberries)

Combine oats and nuts in baking dish and toast in oven for about 12-15 minutes, stirring every few minutes. Turn off oven and remove oats and nuts, set aside to cool.


In small saucepan combine sugar, honey, butter and vanilla. Heat until simmering, stirring constantly.


Remove from heat and set aside while you combine oats and nuts with coconut and fruit.


Pour sugar mixture over dry ingredients and mix very well until everything is coated.


Spread mixture into foil-coated 11x13 inch pan with a spoon or spatula.


Place another layer of foil on top of mixture and press down HARD. This will ensure the bars will not fall apart once cooled.


Allow mixture to cool for 2-3 hours, then remove top layer of foil and lay out on a cutting board. Using a large knife, press down to cut into bars. ( Do not 'saw' as this will cause them to break apart)
When bars are cut, you can wrap them individually in plastic wrap to keep fresh, or place in a large container with layers of foil or wax paper between them so they do not stick together.

A good day

I felt pretty decent yesterday and was able to take a full shower, play with my nephew and make dinner for everyone - something I had not done in a long time. Afterward I slept hard for about 11 hours. I am feeling a lot weaker today as a result of my activity, but it was worth it.
Above is a pic of the sunset yesterday. There was some sort of haze in the air the made the sun look bright orange...very cool.

On a side note.....I've had a persistent tic in my lower right eyelid for the last several days. I don't think it's anything serious, just mildly annoying.

Zombie

Three nights in a row of short, restless sleep....only 7-8 hours each night. I'm beginning to feel like a cranky, weepy zombie. I'm not sure why I'm not sleeping well. I think tonight I will take something and see if that doesn't help me sleep better. If my brain holds up today I will start on the packets that social security sent me. Apparently the hour interview plus a small tree in paperwork was not enough. Ugh.

I'm a moth momma!

I woke this morning to find this small grey moth next to it's cocoon, clinging to the paper towel I had laid against the side of the plastic container I'd been keeping it in, it's shimmering wings fully spread. Isn't it gorgeous? I think it might be a member of the Stergamatae dolliata family.

Darn it!

My herx reaction from my last increase of Samento began to calm down yesterday leaving me feeling close to human. I got a bit ambitious and decided to play my violin for a few minutes. I ran a few scales and a couple of jigs, stopping in between to catch my breath. Today I am in so much pain. I feel as though I've been kicked in the ribs..it hurts to breathe or move. My neck is also very sore and pops when I turn my head. Darn it!!

Heat

I am still sometimes amazed at how heat affects me. It is 74 degrees F here and I was in and out of the sun as I stepped around my garden inspecting my melon crop. After only a few minutes I felt overheated, lightheaded and a bit sweaty. I stood up, unsteady on my feet and staggered into the house for some cold water to keep from passing out. My skin still feels warm to the touch. Before I contracted this disease I could walk downtown for hours in direct sunlight in 110+ degree weather and just be a little sweaty and thirsty, but otherwise ok. Grrrrrr.

There is debate among patients of Lyme disease as to whether or not psychological treatment is needed or helpful. I am among those who believe that it is essential. Not as a cure, because it is most certainly NOT "all in your head", but for support. I have a wonderful psychologist who understands that my illness is physical and real. Talking it out with someone who will listen and understand and offer support has really helped me through some of my darkest times. Simply being heard and believed is something that many of us have never encountered, even from well-meaning family and friends who suggest that we 'exercise more' or 'get a hobby' or 'try to think more positively'. There is a possibility that a counselor, therapist or psychologist may come to the conclusion that it is all in your head when they find that doctors have given up treating, told you it's stress etc. If that is the case, my advice would be to fire their behinds and find someone who 'gets it'. So, that is my two cents on the subject.

Mandala

I increased my dose of Samento yesterday and should begin to feel a reaction soon. I'm resting a lot and trying to stay still to allow my body to do what it needs to internally to process the medicine and fight the disease. To pass the time I have been watching movies and drawing. Above is a mandala I finished this morning. It is approximately 11.5" in diameter.

"But you don't LOOK sick"

One of the most difficult experiences I've encountered in dealing with this disease is uninformed people making infuriating statements. The one I hear the most after explaining to a person that I am ill, is: "really?...but, you don't LOOK sick", and more often than not it is said with incredulity. I really have to bite my tongue to keep from snapping at them .To me, that statement is a negation of my pain, a slap in the face, a questioning of my honesty. No one would even think of saying that to a cancer patient or someone with AIDS, But they say it to us.

Case in point.....I recently took a trip with a friend and had the hotel arrange wheelchair service as just getting to the lobby was too much of a workout for me. As we were leaving the bell person came to our room as I was sitting on the edge of the bed getting ready to hoist myself into the wheelchair. He walked in with his cart, looked me up and down and the first words out of his mouth were "So, where's your cast?... you don't LOOK sick" I wanted to lift my foot and kick him in the goodies. He was lucky I wasn't able to, or he would have been speaking an octave higher the rest of the day. What an incredibly rude thing to say. I did manage to keep my cool and say "My disease affects me internally" but I will admit I gave him the evil eye while saying it. He zipped it after that and kept his comments to himself. I forgave him later, but not before ranting a bit to my friend who was very understanding. In the end I realized that he was probably just an unhappy person who happened to have misplaced his brain-to-mouth filter that day. I just hope he'll be more compassionate with the next person.

Fantastic news

While browsing my youtube account this morning I came across this news clip. I just had to post it here and will be sharing it with everyone I know whose own life or that of a friend/loved one has been affected by Lyme disease. I plan to write a letter of thanks to Rep. Jason Bartlett for his work to get the bill through the house in Conn. We need more people like him to get this disease recognized for what it is. This is a fantastic step toward easing the suffering of millions.

http://www.youtube.com/watch?v=iNxYu9ZoW6M&feature=related

Cycle of my life

I cried most of last night and today, at least during the hours I was conscious. The pain, nausea, fear, trembling, frailty of mind and body are constants from which I find no relief. Days like these leave me wanting to give up; to end the pain once and for all. I don't want to end my life, just my suffering. I will sleep tonight, and face tomorrow when it comes. If I can make it through that one day, I will call my life a success for that moment before I sleep again, hoping to have the courage to repeat the cycle.

Herxheimer

I just woke after sleeping for 9 hours ..which makes it a total of 26 out of the last 36. I am weak, wobbly and in pain. I got a ride to a free activity center today and sat there under a blanket for a few hours while my dad was at work. It was wonderful to get out of the house. I ended up dozing off the last hour I was there before my dad picked me up. As soon as I got home I shuffled to bed and slept hard. Just now waking from that to get something to eat and update my blog. Below is link to a video I shot yesterday describing a bit of the Herx reactions I'm experiencing.

http://www.youtube.com/watch?v=ga07DbVx_sg

Trouble breathing

Still very weak and easily exhausted. Lately having some trouble breathing - I feel as though I'm not getting enough air - my lips tingle, I feel dizzy and my eyelids twitch. This has happened before and I have gone to the hospital. My oxygen saturation has always been fine, so I see no need to go and get stuck with needles again. If it gets worse, I will consider it.

Herx reactions

The herx reactions are getting stronger due to my increase in Samento. I mostly just feel weaker, achier and very stiff in the mornings - it takes me about an hour to warm up my muscles so I can move somewhat normally.

Sleeping

I've been resting and sleeping a lot the last few days. My nightmares have continued but are not as intense. I am very weak and tired as I continue to increase my dosage of Samento, so I have not been active other than watering my garden and preparing food. Getting up in the morning is incredibly difficult as my body is so weak and sore I just don't want to move but I eventually have to give in to either my bladder or my stomach. To pass the time while lying down I've taken to watching a bit of TV (which I generally despise) and listening to music. Today I pulled my stack of felt off my shelves and got my sewing box out to make a gift for one of my case workers - a journal cover. I'm very happy with the way it turned out and think she'll really enjoy it :)