pluggin' along

Well, I made it through another Christmas unscathed ;-)
My condition has not improved since my last post, and has in fact gotten worse over the last week. Sharp stomach pain is constant, worsening after I eat which has me postponing or skipping meals. As a result, I am weakening and have become very depressed, lacking the drive to even care about anything most days. I'm faking it a lot, using every ounce of strength I have to keep going but it is becoming more difficult. I don't know what can be done about this other than seeing an improvement in my physical health. I plan to see both my primary doctor, and lyme doctor as soon as I can to rule out the possibility of additional infection. (I discontinued my MSP, Samento, and probiotics regimen the last two days and have felt some relief from the pain....I am going back on them today as I don't' want too large a gap in treatment)

In other news, Socrates made a full recovery from his fungal infection. He was doing fine until two days ago when he stopped eating. He is still pretty active, swimming around his tank etc, but is snubbing his food. I'm keeping a close eye on him for a recurrence of infection.

yucky bout

after increasing my dose of Samento on Nov 13th I began to feel what I believed to be a delayed herx reaction on the 18th. 22 days later it has not yet let up. The only new symptoms are intense headache, a slight fever that lasted about a week and increased depression (likely a result of feeling so darn crappy) so it's difficult to pinpoint exactly what is going on. I can only speculate that this began as a delayed herx, then became something else - likely a seasonal bug - that my body is still fighting off. I am still taking both medications daily and will continue to do so, increasing only after this latest yucky bout passes. For now I am confined to bed much of the time, and not very functional when up for food or medicine. I'll be very glad when this is over.

In other news, my happy little Betta Socrates has fallen ill with a fungal infection. I have been treating him the last 3 days with anti-fungal drops, and while the fungus is dissolving, my poor fish isn't doing so well. He stopped eating yesterday and spends his time sitting at the bottom of his aquarium, his breathing labored. Poor guy :(. I have stopped treatment to allow his gills to recover, as this type of treatment often affects them. There isn't much else I can do for him now but make him comfortable and wait for him to pull through.

:-P

I increased my dose of Samento again on the 13th and am now on a total of 20 drops per day. I have yet to feel a herx from it. I am still having trouble getting enough air and feel dizzy with tingly lips, gums and fingertips when I laugh or talk for more than a few minutes. This is frustrating, because I love to do both ;-) That's all for now....I'm off to attempt a shower :D

Yuck

I'm not in a good place today. Having spent most of the last two days in tears, I am completely exhausted and unmotivated. The weight of depression feels like a lead suit. I lack the stamina to do much but sit or lie down, as even walking to the toilet leaves me winded and dizzy. There is still a small part of me that wants to do something, anything to keep my mind occupied, but my body is unwilling, and right now, most of my mind is as well. I've not felt this low in some time, and it worries me. I will contact therapist today and left her a message. We'll see if she has any brilliant ideas...or just something I haven't thought of.

My pup!

I came through my last herx on Oct 27th and increased my dose of Samento again by 5 drops on the 28th. I began to herx again last night, with heavy limbs which had me stumbling and pain in hands and fingers. I feel again as though I cannot catch my breath.

In other news I had a very busy day yesterday. I took a full shower and attended my brother's birthday party. I sat and ate and took pics. After 3 hours I could barely stay conscious and was dozing in a chair. The best part aside from seeing my bro was visiting with my dog Halle. I hugged her so tight and cried when I had to leave. I miss her so much!

Back on Samento

Since my last post on the 19th I have been woken nightly with the same stabbing pains shooting down my forearms into my wrist and fingers. Ibuprofen helps but does not eliminate it. My hands are also sensitive to touch in certain places, as though my nerves are on the outside. I began having this pain shortly after I ran out of my B complex supplement. I am curious to see if the pains will subside after I start taking them again. I will ask my dad to pick some up tonight.

I went back on Samento two days ago and am herxing pretty hard. I am extremely exhausted and weak. I also have persistent nausea and diarrhea, which could just be a coincidence and not connected to the Samento. I just woke up after sleeping 22 hours, my heart rate fast ( around 122) but pulse faint. I feel heavy and very weak and am still having difficulty expanding my lungs and feel as though I can't catch my breath. I will take my medicine and eat something, then probably lie back down.

ow, ow, ow!

I started having muscle pain two days ago, mostly in my legs. It feels like I've run a marathon without stretching, and any movement at all is painful. Also, last night I was only able to sleep for about 3 hours due to sharp, stabbing pains running down my arms and legs, all the way to my fingers and toes. I don't know what could be causing this other than the lyme disease affecting my nervous system. Needless to say I'm a bit of a wreck today and still in a lot of pain. I had to cancel my weekly modified yoga class because of it. :(

Missing Grandma

I've been sleeping 12-16 hours a night for about the last week. I'm very glad to be getting plenty of rest without that annoying insomnia.
2 days ago I had a very strange sensation - a tingling in my left arm that that began in my hand near my thumb and moved up to about my elbow. I paid close attention to it in case it traveled farther up my arm or started to hurt, just in case it was heart related. It lasted for a few hours then faded...I still have an occasional tingle near my thumb. Both hands are pretty stiff still and achy when I use them.
Another disturbing bit or news. The last 2 nights I've had 3 very vivid dreams of my grandmother dying of a heart attack on Oct 8th (this coming Thursday). Each time it happens in her kitchen and she passes in my arms. I have had the occasional premonition, and this doesn't feel like one, but I will call her anyway just to tell her how much I love her.

A change

The stomach pain and nausea that began over 2 months ago has begun to let up. While still a bit tender in the tummy area, I can definitely feel an improvement. I still wake some nights with aching, but it's not as bad as it has been.
Also, I've lost 7 lbs in the last 2 weeks. I was worried at first as I seemed to be losing it very quickly, but it has leveled off now and is holding steady at about 122 which is still within the safe and healthy range for my height. This is also the first real clear brain day I've had in weeks. I took advantage of it and did some work on my disability appeal. I have less than 30 days to complete and mail it along with written statements and any new tests my doctor will order, so I'm glad I have the ability to work on it now.

Update

It has been a while since my last post. Since then I have stopped increasing my dose of MSP to allow myself some herx-free weeks to get paperwork in order for social security and to start making winter inventory for my online shop. I have also had to stop taking my Samento as I cannot afford to get another bottle til I sell some things. I hope to be able to go back on the Samento and begin increasing my dose of MSP by the end of October.
I saw my doctor last week. I spoke with her about starting an alkaline diet to make my body less hospitable to the bacteria. She also suggested I go off wheat as I've had a lot of tummy trouble. So right now my diet consists of what is acceptable for both celiac sufferers and those on a strict alkaline diet. It can feel a bit limiting sometimes but the upside is that I get to try out new recipes. Yay!

It worked!

Backing off on that project really helped me relax, and allowed me to sleep for another 7 hours last night - yay! I'm still a bit weak but feeling a lot better than before. I was even able to go shopping down the street for few necessities today. My dad drove me to and from so I didn't melt in the heat. :-)

Insomnia

I've been having bad insomnia the last 3 days which is feeling a lot like when I was on the adrenal meds. Exhausted, but unable to fall asleep for long periods, then unable to stay asleep for more than a few hours before waking again, still exhausted. I shot a video clip about 2 days into it thinking it might be part of a Herx reaction. http://www.youtube.com/watch?v=nc2zflGSUdA
Now I'm thinking it could just be due to excitement. I've been working hard on a project and it's all I've been thinking about. Just last night I noticed that at one point while trying to relax and get some sleep, my mind started going crazy with ideas which I then sat up and wrote down. That's when I realized that could be what has been keeping my ass up ;-) So, I'm taking a break from that project for a few days to see if that helps :-) I already feel a bit more relaxed since shifting my focus to other things. Ttfn. :-)

Herx # 2

After another uncomfortable yet mild herx on the 16th and 17th I am now feeling a little better. I am staying at a friend's house til the end of the week caring for his dog and bird...after I return home I'll increase again. I've been a bit down due to the herxing but I'm trying to stay patient and positive. This week I'll be taking time off from research, fundraising etc. as it has left me feeling overwhelmed. I believe the universe put this house/pet sitting gig in my path to give me a mini vacation ;-) Watching TLC and Discovery channel has been awesome! I have to remind myself to take breaks to eat and care for the animals so I don't become a couch potato..hehe.
Ciao for now!

MSP dose 2 plus probiotic

I increased my dose of Mild Silver Protein to 10 drops today. I am guessing the herx will begin in the next 2-3 days. I've also been on a liquid soy-based probiotic. (Acicophilus) since Monday. It has already helped calm my tummy troubles.
In other news, a friend asked me to house/petsit for a week beginning July 18th. Yay! That means freedom and lots of peace and quiet...oh, and cable tv. Bring on the discovery channel marathon! :-D

Whew

My first reaction to the Mild Silver Protein which began on the 12th has now passed. Whew! It was unpleasant but mild as far as herx reactions go. I'm excited about this and am hoping it means that my bacterial count is down. Time will tell. I will be increasing my dose by 5 drops tomorrow for a total of 10 daily. ta-ta for now! :-)

MSP Herx

My first Herx to the mild silver protein hit yesterday. I'm really feeling it now as I'm a lot weaker and am sleeping day and night to compensate. My guess is that it will pass within a week and I'll be able to increase my dose again. Until then I'm just riding it out and trying to stay positive.

A little better

It has been two days since my last post and my leg muscles are beginning to relax. Walking is a bit easier but still very painful as the muscles I've been using to compensate for the ones that were all knotted up are now sore as well. My entire body is achy and most of my joints crack and pop when I move. I feel like an old folding chair about to collapse. In addition the right side of my hip has been burning, as if someone lit a fire under my skin....it also pops when I move to stand, sit, lie down etc. I will take an epsom salt bath today and see if that doesn't help :-)

Painful setback

I've been having problems with my legs the last couple days. I did a bit more walking around/standing than usual and as a result, my leg muscles are knotted up and I"m in a lot of pain. I massage them as much as I can, but my arms are weak and in pain also, so it's not very effective. Stretching has helped some and allows me to walk when I need to, but still with great difficulty. It feels as though my muscles are bruised and any pressure at all is painful. I also feel a constant burning and heat radiating from them. I've never had a reaction this intense to so little movement before. I have to admit it's more than a bit discouraging, but I'm trying to keep my head focused on my recovery, and not my setbacks.

Silver lining

I've pretty much felt like hell for most of the last week. Joint/muscle pain, weakness and severe brain fog has knocked me on my ass causing me to sleep during the day as well as at night. But, even in my weakened, cotton-headed state I was able to appreciate the gifts the universe sent my way - two gorgeous insects to photograph. The first; a large cicada which had somehow gotten into the house and settled in on one of the vertical blinds in the living room. The second; a giant conifer beetle waiting for me on the back porch - it measured almost 2 inches in length and quickly crawled up my arm as I tried to get a shot of it. My excitement at being able to photograph them up close provided temporary relief from my pain.

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 :)

Weary

Yesterday was a very difficult day, dealing with the fitful sleep filled with nightmares, abusive bill collectors and the constant pain in my body. By evening I was in tears and cried hard for an hour straight. I try to stay strong, but I get weary of the constant struggle, the constant pain, the constant fighting with my body to make it do what I need it to.

A tough day

I've been exhausted and restless the last few days. My sleep pattern has been erratic and I'm having trouble falling asleep despite being completely worn out. I tossed and turned for hours last night, finally falling asleep as the sun came up. The nightmares came back with a vengeance. I woke gasping and irritated. I'm trying not to let it ruin my day. I keep a notebook and pen by my bed and have been writing them down as soon as I wake which helps me to let them go.
In other news, my melon vines have been flowering and one has produced several tiny watermelon which are about the size of a bean. I will post pictures as soon as I can. My dad will be setting up the trellis this weekend for the vines to climb. I plan to grow them vertically to save space and keep the dog from trampling them.
I am very weak and tired today, my muscles aching. So I plan to do as little as possible and maybe I'll feel a bit better tomorrow.

It's 4:37 pm and I just received my 2nd harassing phone call from a new debt collection agency. This guy pulled out all the stops, intimidation, swearing etc. I should have asked him who peed in his cheerios this morning....hehe. I have decided to stop answering my phone unless I recognize the number and communicate with these agencies strictly via mail.

More nightmares

I had more nightmares last night. The first was pretty horrible and woke me just like the others, drenched in sweat. I let the pups out and went back to sleep. The second started out pretty awful but kind of mellowed after a while. It ended strangely but not very scary, so it didn't wake me like the others. I'm still very tired and sleeping day and night despite the rotten dreams. I scooped the doggy poop out of the yard today, which left me dizzy and feeling faint. I had to chug water and rest a bit to recover from it. As I sat resting and writing out my dreams, the dogs started to get rowdy and play with each other. I turned on my camera and got a few minutes of it recorded...they are so cute! I'll post the link later.

Nightmares

I am still very tired and easily winded. I slept 8 hours last night, got up to feed the pups then went back to bed and slept on and off for another 3.5 hours. Both sleeping periods were, once again, filled with nightmares and had me waking drenched in sweat.

Blaaah

I have spent much of the last several days in and out of bed as I seem to need frequent rest breaks. My friends picked me up to spend the night with them last night...they left this morning on vacation so I'm staying here to care for their plants and four small dogs. I did not sleep well last night. I think because the sounds are different here so I woke up often. I ended up snoozing most of the day today to make up for it, but had horrible nightmares and still woke often as a result. So, I'm still very tired and will likely go to bed at a decent hour again tonight. Right now I'm trying to wake up to get the dogs their dinner and cook some of my own.

Worn out

I've been a bit more worn out than usual the last few days, sleeping 10-12 hours at night plus naps during the day. I think it is a result of increasing my dosage of Samento. The pain in my ribs is still present, though not as intense. It seems to be worse when I wake in the morning...likely from the pressure on my ribs all night, as I tend to sleep on my side. I'm still able to water my garden and sit up long enough to write this blog and feed my fishy etc before laying down again, so for that I'm grateful.

My nephew came over to visit yesterday and the day before. On Sunday we walked in the yard looking for bugs and munching on seeds from barrel cactus fruit. He noticed the tiniest little spider dangling from my camera as I stepped under the shade of the mesquite trees. I put it on my hand and tried to get a picture of it. It was fast...crawling all the way up to my sleeve in about 1/2 a second. I did manage to get a great shot though.

Yesterday we made ants on a log (celery sticks filled with peanut butter and topped with raisins). We tried to go outside to eat our snack while sitting on the logs around the fire pit (sitting on a log eating ants on a log - he loved that idea) but it started raining so we moved back inside and put on Young Frankenstein. He got a bit bored during the movie so I let him play with my prototype for a revolving rubber band shooter...he loved that...kept aiming for the characters on the screen.

A good day

I spent most of yesterday lying in bed organizing and filing paperwork, as the pain was still too intense to do much moving. It kept my mind occupied for a while, but by the afternoon I was fed up and frustrated. My friend Steve called as I was lying there gritting my teeth and snarling internally. He said all the right things and within about a minute had managed to break through my shield of anger and frustration, and it all just came pouring out. He listened patiently as I blubbered like an infant, eking out the occasional "thi - iss...*snifffle*....suuuucks". After about 10 straight minutes of bawling, I began to calm down and felt much, much better. We ended up talking for over an hour, just being silly and laughing our butts off. I felt so much lighter and the rest of my day was a whole lot easier. I even managed to get up and do some laundry..yay! Ya gotta love good friends :-D

The pain is lessening a bit each day...whew! I am still twitching occasionally, but not as strong as before.

Paaaaiiiiiinnnn

I have been in severe pain in my ribs and spine the last two days which becomes excruciating when I twitch. It hurts to breathe, move, sit still etc, and feels as though I've been punched hard in the back several times. The pain had me in tears throughout most of yesterday despite downing ibuprofen - I took 4 over the course of the day. I am very sensitive to it and generally a 200mg tablet will relieve my pain for at least 12 hours. But yesterday it was not even making a dent. I distracted myself while lying down by calling friends, sketching and writing a bit of angry poetry. The pain is not as intense today, though I still feel as though my ribs are bruised. My guess is that it is a result of my twitching episode on the 10th. Since I've been ill, my body is slow to react, so it makes sense that it would have taken a few days to show up. It feels as though I really overdid doing backward sit-ups - the soreness being in the muscles. I've decided that today I will focus on completing, mailing and filing paperwork, which has been a bit neglected lately. I can do this while in bed (aside from the mailing part *wink*) so that is good.

As I watered my garden this morning, I noticed that some little critter had chomped away at my cantaloupe vines...nearly obliterating one and nibbling on another. I'll do some research and call my friend who manages a farm and see if she has any ideas.

Sweet kitty

My sister's cat brought me a wonderful present the other day; a large Desert Spiny Lizard (Sceloporus magister). it was about 7 inches long, plus another 4 inches of tail. She trotted into the kitchen with it in her mouth, set it at my feet and sat back, looking at me. Such a sweet kitty. I thanked her graciously for the gift, but explained that I'd already had a snack ;-) I then picked up the lil fella who was unharmed, albeit a bit startled, grabbed my camera and took him outside in the sunlight for a quick photo shoot. He got very squirmy as I tried to get a picture of him, but I did manage to capture beautiful blue/green scales on his belly before setting the squirrely bugger down (when the cat wasn't looking). He scurried off into the grass, to continue his lizard life.

Yesterday I saw my therapist for the second time. The session went well, we're still in the getting-to-know-you phase. We laughed, I cried, then we laughed some more. I really do like her...great sense of humor (she gets all my sarcastic jokes). At our first meeting she asked what I hoped to gain from our time together. I made some snarky remark about her waving a magic wand to fix it all. Without missing a beat, she stood up, grabbed a long clear plastic tube filled with liquid, glitter and little stars from her desk and began waving it around. I was laughing so hard. Gotta love it. The session did wear me out though, and I spent most of that afternoon lying in bed to recover.

Also, my friend was able to identify that mystery bug I posted about on May 8, 2009. It is an Iron Cross Blister Beetle. Cool!

Be?

To be, or not to be?
'Tis the question I face now
To stay within this feeble frame
Or end it all somehow

To continue on through thorns and briers
Every inch of path I tread
As weakness and pain of frail limbs
Scream inside my head

To push the very limits
Of my own sanity
Bound, imprisoned, day after day
My body my enemy

To keep myself within the race
Broken, wounded, lame
Each movement, thought this malady
Like an anvil on them weighing

To be in spite of shaken faith
In life and God on high
To end it now and rue the day
As in my grave I lie

To be a burden to the world
To take without ever giving
To simply 'be', exist, have form
Alive but not quite living

To be or not to be?
Which one do I choose?
Yes or no, right or wrong
Either way, I lose

To be or not to be?
Which is right? Time will tell
For now I will continue on
But is this life or hell?

http://www.youtube.com/watch?v=e-ys2wbqJNQ&feature=related

Link to Post - Back to Top Logged

A rough 24 hours

I had a bad twitching episode the other day. It lasted almost 24 hours - the worst part of it during a 7 hour period - and left me very sore and wiped out. The arm jerking and muscle spasms are pretty much 'normal' for me, but the intense twitching comes less often. (Very grateful for that) I was able to put a bit of it in film, which I then posted on youtube.com. Since then I have gotten such wonderful, supportive responses. I will continue to post video updates on my treatment and condition.
To watch the clip, just go to http://www.youtube.com/watch?v=IRBh34eUNUk
I am still very weak, sore and exhausted. I managed to get outside and water my garden, but with great difficulty. I took my camera, as usual and got a shot of an adorable lizard which I think is living in the rock wall of the planter where my bell peppers are. I've seen him out there the last 3 or 4 times I've been out to water.

A bad day

Very weak today and shaking. Having a bit of trouble controlling my limbs - arms jerk a bit when I try to type etc. I have been sleeping a lot more than usual, up to 16 hours per day and am still very weak during my awake time.

I was able to water my garden, though it took all my strength and sent me back to bed for a nap. While out there I had my camera with me and got a good shot of the baby birds in the palm tree.

Interview completed

I completed my phone interview with Social Security today at 9am. It lasted approximately 80 minutes. I put my cell on speaker and set my micro recorder next to it so I have it all on tape. It was exhausting as I was already very tired and had drank a coke to stay awake. There are a few bits of information I need to send them as well as a release of information form so they can access my medical records. I will be contacting lawyers who specialize in disability claims and will not charge unless I am approved.

In other news, my brother Drew brought me an awesome bug today. It looks like some sort of ant/beetle hybrid. It was very wriggly and would not sit still, so it took me a while to get a good photo...I swear it was giving me the evil eye at one point....hehe, I'm curious to find out just what it is. I think I'll send it to my friend who is really into bugs...she may be able to identify it more quickly.

Tough night

I tossed and turned in pain all night, unable to find a position to ease my discomfort, and too exhausted to get up. My left leg still aches from my hip to the back of my knee, and I am utterly wiped out. I had a bit of trouble breathing last night also, I felt as though I could not take in enough air....I think the term for it is "air hungry". I am still feeling that way so am sitting down and trying not to exert myself.

I ended up lying back down and sleeping for another 4 hours ( for a total of 16) after I wrote the beginning of this post. I do feel a bit better having had some more rest, and the pain is not as intense. However, I am still somewhat out of breath.

I have a phone appointment with Social Security in the morning so I may go back to bed in a bit and see if I can get some more sleep. I want to be focused and at least somewhat coherent when they call ;-)

Whacky sleep schedule

OK, my sleep schedule is all whacky. After sleeping 14 hours yesterday then being up til 4am, I slept for only 4 hours and cannot get back to sleep despite being very tired and shaky. It's very strange, and feels almost as though I've had some sort of stimulant like caffeine.

I decided that as long as I'm awake, I might as well be productive. So I had breakfast, watered my garden and made a few phone calls. My peppers, cucumber and zucchini have not sprouted yet, but my watermelon and cantaloupe are growing like weeds. One week ago I posted a picture of the first watermelon sprout. Above is that same sprout today.

Sleeeeeep

I woke at 6pm today after sleeping for a solid 14 hours straight..whew!

My nephew came to visit last night, and wore me plum out. He discovered my digital camera and asked if he could take a picture. I told him to shoot away, as my memory card will hold about

1000 pics. He went nuts photographing everything in sight, including me with some not-so-photogenic expressions..hehehe. I managed to get one goofy one of him too ( above) so I guess we're even. He ended up taking over 100 pictures and we laughed our butts off looking through them. Later on we went bug hunting as the sun was going down. We found a small caterpillar in one of our mesquite trees that I have yet to identify. We made him a home out of an old box and some screen. I plan to keep him until he cocoons and release him after he hatches. I hope my nephew is here to see him hatch, I think he would love that! :-)

Bird!

I finally caught one of our palm tree nesters on camera. (If you look closely you'll see it perched just above the hole in the tree, worms it it's beak)I'm still not sure what kind of bird it is.....I don't recall seeing it before this year. I think now there is only one baby bird in that nest. It poked it's little head out and squawked the other day. It was pretty big, and I'm not surprised considering how many bugs the lil critter eats!

I've been pretty busy keeping up with paperwork and my garden, which has expanded to include cucumbers and zucchini. My health is still poor but is levelling off. I'm just grateful I'm not getting worse at this point, and can still walk around the house and take care of basic things.

Lizard - take two

OK, so much for going to bed early. It's almost 2am here and I'm not able to sleep yet. The pain in my legs and hips is keeping me awake. So, I thought I'd get up, take some ibuprofen and put another shot of that cool lizard in here ;-)

Overwhelmed

Last night I heard some disturbing news about my uncle who passed away 23 years ago. He is now being investigated in connection with an out off state murder and I'm trying to process it. Also having a painful conflict with a good friend of mine and not sure how it's going to turn out. I cried on and off all night and most of the day today. I've tried to stay busy and distract myself between sobs, but it has been hard.

I sat outside in the shade for a while and that helped. Meows and Mojo (cat and dog) were out with me as I sat by the palm tree and watched the soda can pinwheels spin in the breeze. Meows caught a lizard tho and I had to rescue it. The poor fella came out ok except for missing the tip of his tail. I picked him up...he was feisty!... almost jumped right out of my hand. I snapped a pic before letting him go on the other side of the fence while the cat wasn't looking.

All the crying and mixed emotions have worn me out. I feel very weak and drained, and will likely go to bed early.

Little bird

Meows (sister's cat) caught a small songbird yesterday. She trotted into the kitchen with it and I picked her up and walked her back outside while she squirmed and fussed and eventually dropped the the bird who landed with a 'plop' on the ground. I set the kitty down and picked up the tiny bird who was breathing hard, mouth open gasping for breath. I then placed it on a small landing of sorts in our mesquite tree while I set up a cozy bed for it to lay on inside the cat carrier. It was very late, and my dad had already gone to bed, so I scooped up the little bird, fed it some water with an eye dropper before placing it inside the carrier which I set in the laundry room to keep the lil fella warm overnight. I had planned to ask my dad to take it to a wildlife rescue group this morning, but when I woke and went in to check on it, it had passed :-(
I'll wait til the sun begins to set before going out to find a nice burial site for the little critter.

I found a nice burial site and laid the bird to rest. Then I went a little nuts digging up the garden to plant some peppers. I found a really huge grub and took a pic of it..not really sure what kind of beetle it's gonna be, but it sure was interesting.

Another day

Very weak and tired today. I tried to be up and about, but felt winded from attempting even small tasks like moving my computer chair (it's on wheels) and getting up for a glass of water. One thing I did manage to do was water my garden. All the seeds have now sprouted, and are sporting tiny pairs of green leaves. I had trouble keeping my balance once I got back inside and bumped into the door jamb a few times before reaching my bed. I rested a while, called some friends to pass the time, then sat up for a bit and did some paper crafts....I must have made about 5 pinwheels - one from a photocopy I made of a ten dollar bill - before I got dizzy and had to stop.
I faxed the final paperwork needed to process my application for food stamps and medical insurance to the state DES office. I should hear back in a few weeks.

Grrrr

I missed an appointment with my therapist today. I called her around 4am to let her know I was not able to sleep and would likely be too exhausted to make it in. That was all the notice I could give her. I hate this! I dozed off shortly after calling her and woke around 1 pm....my appointment was at noon. I was hardly able to move and it took a lot of time and effort to get my muscles awake enough to get out of bed. I called her back and requested another appointment later in the week if she had it open.
On a happier note, my watermelon seeds are sprouting! :) I stumbled out to water them today and the first has two leaves already, and the second is pushing up thru the dirt. I'm excited! :)
Also, a small black bird with a bright yellow curved beak has made our date palm it's home....and I can year tiny chirps coming from it's nest inside the tree.....likely left by a woodpecker from a previous season, as the hole is not new. My brother Mike put a ladder up for me and I slowly made my way to the nest - camera in hand. Sadly the hole was too deep for my lens to capture the baby birdies thru the narrow opening. I will have to wait a while and possibly catch them when they're large enough to start poking their heads out.

Sleep

I didn't sleep well last night, and have been even more tired today than yesterday. I woke up at 8am and could barely stand, so I went back to bed and slept 'til 2pm..a total of 12 hours. Since waking I've had a head full of cotton and been very weak.

Weaker

I am weaker yet today, my burning muscles restricting my movements even more :-(
I borrowed money from dad to take a cab two blocks from here to the DES office. I hate feeling so weak and incapable!

Blaaaah

I seem to be a little more tired each day, even though I'm really not exerting myself at all. My muscles are burning more also, especially when reaching for something or going from sitting to standing. They also burn a lot when I hold a position for more than a few seconds...like standing or holding a glass of water.

A good day

I slept 3 hours past my alarm this morning, a total of 14 hours...I guess I needed the extra sleep. I didn't do much today, just had some food and rested til my friends picked me up for game night. It was a total blast...10 people there this time. Lordy, I don't remember the last time I laughed so hard. :-D Going to bed early sounds like a good idea. All that fun just wore me plum out!

Alone

My dad left on a 3 day camping trip today with my 3 brothers. He did not bother to tell me. He took the truck, food, spices and cooking utensils etc. If I hadn't caught him on his way out to get 20 bucks in case of an emergency I would have been left without a way to get to hospital, or money for food. I am very angry that I was forgotten in his plans, and am trying to settle down so I can sleep.
Also, my baby sister did not come home from school today. I tried texting and calling her. She did not answer or return my messages. With no way to contact my dad, I rang my older sister and got my mom's phone number. She agreed to drive to baby sister's boyfriend's apartment to see if she was there and ok. She was - thank goodness! - watching a movie and didn't hear her cell phone ring. Her boyfriend is out of town so she had gone over there after school to tidy up for him. She is supposed to call me in a few minutes to let me know if she is coming home tonight or sleeping there.

Good things in the works

OK, I finally got another phone appointment with the state for food stamps and medical insurance, and they called me this time! I just have to send them a few documents and have my fingerprints taken. Whew!
In other news, my medical doctor has agreed to sign my paperwork for disability, and also provide information on my condition to para-transit. Yay! What a relief it will be to have the freedom to schedule doctor appointments etc, and not have to worry about how to get there.
Also, I started seeing a therapist to help me deal with the anger I've been feeling about this whole situation. It's pretty tough to be trapped in my own body day in and day out, and I just get so frustrated. So, hopefully talking with her will help me sort it out.
And last but not least, I finished and printed my first coloring book :-D I will be contacting yoga studios and local bookstores to see how many they would like to buy :-)

Stoooopid government offices!

I was not contacted for my phone appointment yesterday ( for emergency food stamps and medical insurance)....grrrr. I was told they called me twice and got my voicemail, but I had the phone in my hand from an hour before to an hour after my appointment, and it did not ring. I even called them when my appointment time had passed and left a message. My guess is that someone in the department is dyslexic and transposed some of the digits in my phone number. I will be pestering them again today.
In other news, I did some more research and found a local copy shop that will let me use their binding machine if I bring my own binders... :-D As soon as my funds transfer goes through to my checking account, I'll see about getting a ride or borrowing my older sister's car while she's at work....she parks it here and rides her bike to and from work.
Today I will be getting my originals ready for printing, and shopping around for affordable comb binders. Ta-ta for now!

Food stamps!!

I have a phone appointment in about 2 hours to get emergency food stamps and renew my health insurance. Yay! I'm very glad, as they lost my last application, and I've been living on pb&j's.
I've been feeling very weak, so today I'll be spending most of my time indoors at the computer or in bed. I plan to mail letters to collections agencies and search for an affordable binding machine for my coloring books. I have checked amazon, ebay, craigslist and freecycle. So far the average price is about $70.00. Copy places like kinkos do not let customers use the machine....and they charge 3.99 per document to punch and bind....ouch! I think I will try calling some local copy shops to see if they have one available for customers to use.
Anyhoo, that's my plan for the day. Will write more later....ta-ta!

Update

The symptoms that resurfaces after I got back from Vegas have eased up enough for me to feel up to getting a few things done, so I've been a busy bee!
I contacted para-transit and am in the process of applying for services, did some wheelchair shopping, since my legs have not been working well lately, and having a chair in Vegas was a tremendous help. Then I sent out a renewal form for state health insurance and food stamps, and a letter to the courts regarding my fees from my eviction a few years back. Poor fellas won't be getting any money from me for a while, but I'm sure they'll live ;-) I scheduled an appointment with my doctor for April 17th for a follow-up and will ask her about an allergy remedy and the pro's and cons of starting antibiotics. I already have the silver protein so she may want me to start that first and see how it goes.
Today I plan to go out for a short walk, as the weather is absolutely gorgeous! It rained hard last night so it is nippy and slightly overcast...my favorite weather! Will write more soon. Ta-ta!

Update

It has been quite a while since my last post, so here's a quick update.
I flew up to Las Vegas on March 26th despite still feeling very ill. I needed a break and a change of scenery. I'm very glad I went! It was awesome! My friend pushed my wheelchair around and took great care of me while we had tons of fun! The symptoms I was experiencing in my last post seemed to fade.
I flew back home on April 2nd....I was tired, but still feeling somewhat ok. Within an hour of touching down, my symptoms returned - heat sick, achy skin, headache, stomach upset, exhaustion etc.....they have just gotten worse since. I'm thinking it just may be my body reacting very strongly to dust and pollen here as we've had lots of wind and everything is blooming. I will be calling my doctor tomorrow to set up an appointment and will ask her to prescribe something for allergies that might help calm my body down.

Another hospital visit

I spent 13 hours in the hospital Monday night and early Tuesday. The constant feeling of being overheated and extremely thirsty, coupled with the appearance of some bad abdominal pain had me worried about my kidneys. I had been drinking lots of water, tea and juice, but not really eliminating all that much. After 2 litres of fluids in the ER, I only peed once, and just a little. They ran blood and urine tests, and an ultrasound to check my liver, kidneys, gall bladder and appendix. Everything checked out, so I was sent home. I'm glad they ruled out the big stuff, even tho they had no explanation for my pain, or why I was not eliminating properly. I was told to follow up with my primary doc to have my hormone levels checked. I sent my doc an email and will call her office in the morning for a follow-up.

Stable

My heart rate came down yesterday and has stayed within the 80's since, so I feel a bit better - not as yucky overall. Still very easily fatigued tho, with little to no stamina. I'm taking it easy and just doing what I can each day.

Still high

Heart rate is still holding fairly steady at around 100. It is uncomfortable and very tiring. I am unsure what to do since my heart checks out as strong and free of defects and the ER staff will only try to convince me I'm having a panic attack and push xanax. If it continues through tomorrow I will consider emailing my doctor, Though I doubt there is anything she can do either.

Heart rate

I have been very easily fatigued this last week, and my heart rate has been uncomfortably high. It began spiking as high as 130 several days ago, but I was able to get it down into the 80's within about an hour with deep breathing and visualization. Last night it jumped to 100 and has stayed there despite my best efforts to relax and bring it down. I am staying still as much as possible and taking deep breaths, tho so far it has not been below 100. I have stayed off my adrenal and thyroid meds, so this is not a reaction to those. I will continue to monitor it, and go to the ER if necessary.

Med reaction?

I think I may be having another med reaction. When I was having difficulty sleeping I went off my adrenal and thyroid meds til my sleep stabilized. I have since gone back on the thyroid meds and am having trouble staying asleep, and when I am awake I am a bit jittery. I will call my doctor today and discuss possibly lowering the dose or going off them completely. I am currently on 1/2 grain per day.

Sleeping normally

My sleep seems to have normalized. I am now sleeping 12 hours per night, waking only once to eat then back to sleep. I am also feeling a bit more energized during the day which is awesome!
I received my new medication in the mail yesterday and will start taking it as soon as I hear from my doctor regarding the dosage. I is a mild silver protein - very potent stuff. I expect it will knock me on my butt for a while as it did last time, before I begin to see greater improvement in my overall health.
In other news I will be starting salsa classes again beginning the week of the 27th. I'm very excited about it as I have missed it soooo much. Also, I am sewing again and just made myself a summer shirt. It feels good to be productive!

Down time

I have been in bed much of the last two days, sleeping in 4-5 hour periods at a time with small meals and bathroom breaks in between. I feel very weak and shaky with very little stamina. I am unsure if this is my body's reaction to coming off the adrenal meds or if I'm fighting something like a cold. Time will tell. I slept 9 hours today after sleeping 9 hours last night and still feel sleep-deprived. I think I'll try sitting in bed and crocheting one of my orders to keep me sane till I fall asleep again ;-)

Med reaction

I started taking IsoCort about a week ago; a new adrenal medication. After about 3 days on it I began to have difficulty sleeping. After 5 days I was only dozing on and off for maybe 5 hours out of every 24 and feeling very agitated. I finally made the connection between my sleep disruption and my new meds. I stopped taking them two days ago and called my doctor. She agreed that was likely the problem and told me to stay off them til my sleep stabilized. Since then I do feel a bit more relaxed and am sleeping for longer periods. I do think it will take a few more days for my sleep schedule to normalize. Until then, I'm taking it easy and enjoying not feeling like a sleep-deprived loon ;-)

I'm baaaack!

It has been a while since my last post..I apologize for that. I am back in Arizona and have been a very busy girl! My health is holding steady at 'functional' so I've been taking great advantage of that by getting as much done as I possibly can. Right now I'm also beading like a fiend in preparation for opening a tent at the flea market either the end of this month or the beginning of march. I called my old boss the other day and he has agreed to hire me back on...yay!. I will start part time - maybe 5-10 hours per week - til I get my strength back, then will add hours as I am able :-) Anyway, I'll write more later...right now it's time to kick my friend's butt at literati, grab a snack and hit the hay :-)

La vida drizzly

Day three here in Washington and I am still amazed at the sheer quantity/bushiness of the plant life. From the moss-covered trees to the actual grass in people's yards to the lush bed of ferns under the pine trees....so beautiful :-) The rain has let up a bit and there is even a chance we'll see a bit of sun in the next few days. We just may head to the park today or ride the ferry while the weather is nice ..I can't wait! ....I plan to take a pantload of pics so y'all can see what it's like up here. Anyhoo...back to work. ta-ta for now!

Washington!

My cold packed it's bags and split a few days ago, and I'm feeling much better...just a bit weak but otherwise ok :-) I am now in Washington visiting a friend thru the 15th of this month. The flight was alright except for the landing. Heavy rain and strong winds had the plane being tossed around as we circled the airport.....the landing gear slammed down on the runway with a jolting 'slam'. At one point the woman in the seat next to me whom I had been chatting with, handed me a barf bag and offered to hold my hair back....I must've been green....hehehe. Needless to say, I was very glad to step off that plane onto solid ground. Anyway, it's lovely here....so much green and not a single spiny plant...lol. John has been great...showing me around town and hugging me silly which is one thing I have really missed. It's been wonderful to get away and clear my head, and have a change of pace/scenery. I'm hoping this trip helps recharge my batteries as I was starting to get down and a bit stir-crazy at dad's house.