The Daily Slice

Court Hearing

2011-06-04T11:32:00.000-07:00

I went to court on June 2nd to plead my case to an administrative law judge in hopes of being awarded disability benefits. It was grueling as every word, action and decision was questioned. I understand this judge is only doing his job, and that the lack of definitive evidence is making this case a difficult one for everyone involved, as they have only my statements of symptoms to go on, as that is how I was diagnosed since testing has proven little. As difficult as it was sitting before that judge, being picked apart, my frustration still lies with the doctors who refused to keep looking for answers, as my body deteriorated. I have accepted that I may not be awarded benefits because of them. I am a fighter, I will find a way to make it! And, regardless of the outcome of the hearing, I can console myself with the knowledge that I have been truthful in my statements, whether or not I am believed. This judge must be given credit for ordering further testing, gotta love him for that! We will see if those tests turn up anything....I am not getting my hopes up, as none to this date have proven anything. It is absolute hell to feel something like this and not be able to prove it. I think I would like to send this judge some information about lyme disease and the difficulty in obtaining a positive test result due to the effects of the disease itself. Perhaps that would help him make a more informed decision, and in turn help the next person he encounters in my situation get the benefits they so desperately need.
In the meantime, I am considering letting my doctor order a western blot through Igenex. The borelia contain a string of proteins to which the body develops antibodies. Most laboratories only test for antibodies to a small number of these proteins, whereas Igenex laboratories tests for all of them. This will not give a definitive diagnosis, but it should help convince my doctor's board that antibiotics are needed should I decide to try them. For now I am starting natural antibiotics such as garlic and silver hydrosol to see what improvements can be made with those first.

WTF???

2010-10-13T16:29:00.000-07:00

In the last two weeks I have developed a pretty constant twitch/spasm in my left hand. It is mostly my index finger (but sometimes my thumb and middle finger) that goes suddenly rigid and pulls to the side, trembling. This makes typing and grasping object difficult. Oh, and it feels really weird too!

My word recall/comprehension has be worsening for about the last three days. Difficulty understanding what I read - even the comics - forming sentences, speaking (I stutter and trip over my tongue) and following simple conversations has left me very frustrated. For all those who feel the need to tell me I write just fine - here's why: I wait 'til I'm coherent to post. This is NOT my normal state.

In fund-raising news; I'm coming up against the same roadblocks as before. No one wants to donate to an individual, only charities or causes. *slams head on desk*
As for microgiving.com, they have disabled my request due to my inability to provide information that doesn't exist. So, I can either start a new request and try to find that information before they disable it again, OR I can set up a different type of request without the verification and hope people respond. I swear, my head is gonna pop off in about 5 f*cking seconds here. I'm gonna go scream into a pillow and hope I don't lose my voice or tweak my neck in the process.

Kidnapped....

2010-09-25T16:01:00.000-07:00

I'm shaking like a leaf this afternoon and am very unsteady on my feet after a marathon 24 hours of sleep. A friend kidnapped me and took me to Las Vegas on Monday for a much needed vacation. It was a blast, and for brief moments I forgot all about my illness and was able to have a great time :) We visited a few hotels, saw some shows and got a ton of pics. For the first two days I was able to push pretty hard, ignoring my symptoms, until I began to wind down on the last day, struggling to sit up without feeling dizzy. I pushed even then, wanting to squeeze every bit of fun I could out of the trip. As a result, the disease has reacted, hitting me like a ton of bricks. My hands are shaking so badly it is difficult to type and I will likely need to lie back down in a few minutes. It was worth it though, I had an awesome time! The best part was those short periods where I felt like a normal person doing normal things. I will keep those moments with me.

Gail and Roy Pruitt are awesome!

2010-09-14T14:43:00.000-07:00

Wow, it's been a long time since my last post! Lots happening here. After a successful fund raiser put on by a friend and a pretty dismal one done myself..lol...I was doing ok, my hopes were higher as I was seeing progress toward my goal. Then came a letter from a local car dealer who is known for his charity and community work, whom I had written to a couple months beforehand. It stated that he could not help me at this time, and wished me luck. I thought I was ok with it at first, but then started to slip into a depression. I had to find a way out of that emotional place, so I kept my eyes open for opportunities and found one literally sitting around. Our city's brush and bulky collection is this month and neighbors up and down the block were setting out items to be collected, some of them very nice. Light bulb moment! I borrowed my brother's little hatch back and meandered around the neighborhood picking up small furniture items in decent condition to clean up and sell. The first day I found a small glass top end table. The second day a miracle happened.
As I inched by a house with a few small items at the curb, a silver-haired gentleman with a friendly smile strolled out of the carport area carrying a bundle of tree branches. His wife came out a moment later and we got to chatting about the items on the curb. She asked if I could use a bed frame.....I said 'sure!' and followed her into the carport to check it out. "How about a lamp, could you use a lamp?" We went inside. She had another lamp, and some shelves, and a rocker. I asked if they were moving as it seemed a bit sparse inside. They explained to me that the house was not theirs but had belonged to their mother who had recently passed in her sleep at the age of 96. I felt the need to tell them right there that anything of hers that they gave me was going to be sold as I was raising funds for my medical treatment. The lady was so sweet, she said "we were just going to give it to habitat for humanity....but you're humanity". I felt so blessed in that moment, that these kind people had chosen to give me a helping hand. I came back that weekend with my dad and sister's boyfriend and we loaded everything up, filling the entire truck! I thanked them both so much for their help, and the lady just kept hugging me and wishing me luck. I was so grateful I had to give her husband a big squeeze too...hehe. Meeting the two of them was a miracle and something I will not soon forget. Their names are Gail and Roy Pruitt. If you know them or come across them, shake their hands, give them a hug and thank them again for me. :-)

Charity drive complete!

2010-08-13T07:23:00.000-07:00

My baby hat charity drive ended August 10th with a total of 30 hats completed - a bit short of my goal of 35 - and donations in the amount of $50.00, and pledges in the amount of $0.70 per hat. This comes to a total of $71.00

Charity drive - day 16

2010-08-04T19:17:00.000-07:00

Since my last post, a few loose ends I'd tied up for my trip have come undone, so I had had to cancel my flight to California. I don't know yet when I'll be leaving. My flight is on hold with the airline until things are in order. Wish me luck!
Having to wait around for a while longer has give me more time to make hats :) Below are the last five I've made.

Donations: $50.00
Pledges: $0.70

Charity drive - day 12

2010-07-31T22:30:00.000-07:00

Today was pretty tough after being so active yesterday. I wanted to nap several times, but still managed to get a load of laundry done and tidy up a bit. I'm very excited about my upcoming trip, although I do have a bit of anxiety about the treatment itself, as I know it's gonna really kick my butt. My affairs are approaching some sort of order as I get ready to leave, and I will try to make a few more hats before I go. Above are the last two I made.

Donations: $50.00
Pledges: $0.70

Charity drive - day 11

2010-07-31T00:17:00.000-07:00

Today was a good day. I went out with a friend and her husband for coffee and LOTS of chatting :) They had some awesome ideas for me regarding my fund raiser which I may try to explain later when I'm more focused. Brain is kinda 'pffft' today.
Despite constant shaking and feeling very unsteady on my feet, I managed to look presentable and stay in the conversation for the most part (I did get pretty loopy toward the end of our outing). No hats today, just too wiped out from the activity.

Charity drive - day 10

2010-07-29T12:40:00.000-07:00

In my excitement taking care of my travel plans, I completely forgot to post yesterday. Here are the hats I finished :-)

charity drive - day 8

2010-07-27T19:52:00.001-07:00

I'm so excited today I can hardly contain myself! I received enough funds to make my down payment at the San Diego clinic and have already booked my flights and hotel to begin treatment on August 2nd! Yay!!! I will continue my fund raiser there so I can keep making payments as I go. More hats to come!!

Donations: $50.00
Pledges: $0.70

Charity drive - day 7

2010-07-26T20:07:00.000-07:00

Exhausted and in pain...managed to make one more hat.

Donations: $50.00
Pledges: $0.20

Charity drive - day 6

2010-07-25T16:24:00.000-07:00

My body is struggling today. I ended up needing a nap again, despite a full night's sleep. I am also in more pain than usual. My left shoulder is sore and stiff, and both my hands throb constantly. Letting go of the frustration is the hardest part, but once I am able to do that, waiting becomes easier. Right now, I knit to stay sane for several reasons. First, it keeps me busy, and second, it is helping me reach my goal so I no longer have to feel this day in and day out. I hope that all made sense, I'm having trouble keeping a train of thought going. Anyway, thanks for reading....until tomorrow.

Charity drive - day 5

2010-07-24T23:51:00.000-07:00

I woke feeling downright awful today after about 8 hours sleep. After breakfast I went back to bed and slept another 7 hours, which I must have needed. My nephew came over in the afternoon and we ate dinner and played board games. I had to excuse myself pretty early on as the activity just wiped me out. I did manage to finish up another hat while lying in bed and am only up to post a pic of it before crawling right back under the covers.

charity drive - day 4

2010-07-23T20:32:00.000-07:00

I'm doing a little better today with the nausea, which I'm really grateful for. The weather was nice this morning so I took a short walk down the block. My pain levels have risen, but not to an unbearable level...just the usual ache in my hands and some intermittent sharp pains in my feet when I sit or lie down, which I think are the result of my walk...not too smart of me to wear flip flops. Live and learn!

Day 4 is going well...I finished 3 more hats! :D

Charity drive - day 3

2010-07-22T20:04:00.000-07:00

Last night was pretty rough. I woke several times gasping for breath, and continued to have difficulty breathing for several minutes before feeling ok enough to go fall back to sleep. This morning I stumbled a lot, but am walking better now. Despite the constant feeling of wanting to throw up, I did manage to make two more hats today. Yay! I decided to crochet them to add a bit of variety :-) Here they are!

Charity drive

2010-07-21T09:12:00.000-07:00

I'm feeling a little more stable now and have been able to be off the anti-anxiety meds for a few days. Whew! I am still very restless, but it is manageable as long as I keep my brain busy.
So, here's the scoop: I've decided to do a sort of one-woman charity drive/fund-raiser. Here's how it works.
I will knit and crochet as many baby hats as I can between now and August 10th for donation to Tucson Medical Center's maternity and NICU wards. My minimum goal is 35 hats, with a maximum of 50.
Here's how you can help: Sponsor my charity drive by pledging a quarter, a dime or whatever you like per hat that I complete to help me pay for my medical treatment. Easy Squeezy, huh? :-D you can even get your friends, neighbors and co-workers involved by printing out a pledge form that I can send you via email and have them mail or email it back to me. :)
I will be posting photos of the hats as I complete them and updating pledge amounts several times per week.
If you have any questions, or would like a pledge form and/or mailing address, feel free to contact me via email at amoneof8@yahoo.com

Thanks!!

Merde

2010-07-16T23:43:00.000-07:00

I am in hell. For about the last 4 days I've been in a constant state of high anxiety. No particular thoughts or fears etc, just an intense physical sensation of panic. I shake, my heart does flip-flops and I want to run, but there is nothing to run from. I cannot remain still. Foot-tapping, rocking, or doing something repetitive with my hands takes a bit of the edge off, though my only real relief has come in the form of an anti-anxiety pill. I hate to take it because it slows me way down and makes me sleep...but without it, the desire to scream and bang my head against a wall to make the sensations go away is just too strong to cope with. I have never felt so not-sane in my entire life. :-(

Losing "Me"

2010-06-21T23:19:00.000-07:00

How does one who is losing their mind communicate effectively how they feel about losing their mind? The most frustrating part of this disease is the way it affects my brain. It's what makes me who I am...everything stored within it is essentially "me". To see it being chipped away a little at a time, is like losing yet another piece of myself, over and over again. I imagine this is what it must feel like to go insane.
This morning, after many attempts to sleep without success I attended my psychologist appointment. By the time I arrived I was barely able to walk across the parking lot to the office. It took me about 15 minutes to catch my breath and be able to talk. My speech became more and more slurred, to where he could barely understand me. The words were there, in my head, they just became more and more difficult to speak. 20 minutes in, I could no longer form words and was in tears. Images, feelings, concepts all whirring around in a frenzy inside my skull, and I couldn't express a single bit of it. I grabbed a pen and paper to try to convey what was going on, but even communicating on paper proved too difficult a task for my exhausted brain. After about 30 minutes, between sobs and pounding my fist on the note pad I managed to get my hand and brain to cooperate a little and scrawl out a few images. With a lot of gestures and pointing, I explained what was going on to some satisfactory degree. He must be a whiz at pictionary and charades, because he caught on in seconds. I'm SO grateful for that. It made an already scary and frustrating event, that much more manageable.
I dozed in the waiting room for about half hour before getting back on the road, and crawled into bed when I got home. I did manage to sleep for a few hours on and off, but am still exhausted. I've said a total of 6 words since coming back home, all of them mangled. At least I've had enough rest to be able to put words together on the screen, even though they cannot even come close to doing justice to what I experienced today. I'm sure I'll be talking better after more sleep.

Is it June already??

2010-06-17T23:47:00.000-07:00

My left wrist has gotten steadily worse since it began to hurt in May. I am able to use my left hand and arm less and less, as lifting and grasping is becoming increasingly painful.
My frustration levels have also been high. Family issues coupled with slow response time from doctors has brought me to levels of desperation I have not felt in a long time. The last two days have been especially hard....feeling the urge to scream and just pound something...anything. I have been allowing myself to let loose with the foul language as my psychologist suggested, as it really is my only major outlet. It's helping in some ways, though I don't really like having such a foul mouth. I think the heat has been contributing to my rotten mood as well, being in the triple digits. Yuck!
Lately I feel like I'm going insane from all this....losing my mind. I've been assured by my psychologist that I'm quite sane....though I don't feel it. Anyway, I'll try to write more when I can. Peace!

Zoning out

2010-05-27T21:01:00.000-07:00

I've been having periods of time where I zone out. It feels as though everything suddenly slows down and I am heavy and sluggish....talking is very hard and sometimes impossible. I've had these for quite some time now and just thought I was suddenly run down so I would go to bed and rest. Last night I had one in front of some friends for the first time. I was unresponsive and one of them told me later he was about to call 911 right before I came out of it. I guess not having witnessed the effect, I hadn't realized how serious they were. I will definitely be informing my doctor. I uploaded a new video clip, and you'll notice I appear to I space out for a few seconds several times during the recording. The episodes are a bit like that but last a lot longer. Last night's 'episode' lasted for the better part of 20 minutes, and others have lasted much longer.

http://www.youtube.com/watch?v=p6DZ3s05U9o

Changes

2010-05-15T14:31:00.000-07:00

I continue to be amazed at how this disease randomly changes in the way it affects me. While my speech is clearer now most of the time and I don't have as many twitching episodes, I now have more joint stiffness and pain, and random jerking movements; mostly in my limbs. My left wrist is very sore all the time, as though it's mildly sprained and I cannot put weight on it without intense pain. My left knee aches constantly and walking is difficult. Also my muscles have weakened significantly in the last few months. My legs and arms will buckle when trying to move around or support myself. I've also had recurring pain that is unlike any other. It is not a sharp pain, but a dull nagging ache...it feels like my bones are screaming at me. The pain is more aggravating than anything else and leaves me wanting to grinding my teeth in frustration Many have asked if I've told my doctor all this. Frankly, I don't see the point. It is all caused by the disease, so when I treat that, it will all go away. I'd rather not waste my precious little energy trying to treat symptoms when I could be raising fund to treat the underlying disease. For now I will take ibuprofen to dull the pain so I can focus on my goal.

*#%@&%(!!!!!!

2010-05-12T13:01:00.001-07:00

My frustration levels are rising today. After months of attempting to contact the owner of a message board I belong to to get permission to publish a post about my condition and ask for donations to be sent to the clinic on my behalf, I finally got in touch with him and got the green light. I posted it yesterday, but within a few hours it was removed by the moderators. It seems he forgot to tell them he ok'd it. I have messaged him and am awaiting response. After feeling the relief of finally getting it posted after months of work, it felt like a kick in the gut to have it deleted. I can feel myself slipping into a depression over this, as it seems to be a recurring theme. I make a little progress, only to get kicked back to where I started. *taking deep breaths* I have been getting sicker again, with weakness and pain increasing, so my feelings of frantic desperation are taking hold. I don't know how much longer I can continue this way.

Yay!!!!

2010-04-24T11:16:00.000-07:00

after several months of waiting, I believe I am finally having another episode of intermittent Porphyria. Stabbing pains in abdomen, hands and feet began on friday and I now have a low grade fever, difficulty eating and going to the bathroom and my urine came out kinda pinkish this morning. Yay!!! This is what I have been waiting for!. I will begin the 24-hour test first thing in the morning. I have never been so giddy to be in so much pain...lol

A weird day

2010-04-09T17:07:00.001-07:00

It's been a weird day. Numbness in lower left side of my face (around ear and jaw), stomach upset and pain, bad heart burn - which is very very rare for me - and a sharp pain in the center of my chest (which has since gone away) that increased when I exhaled. My heart rate has been slower than usual, hovering in the 75ish range most of the day, only a few spikes above 100. Still very weak and shaky. I feel best right after I eat. An hour or more after, I feel like I will pass out from lack of food, as if my blood sugar has suddenly dropped, even tho I know that's not possible. Also, in the last two days I have begun to suddenly shake and sweat when lying down, feeling like my heart is beating very hard...like a tiny hammer in my neck. It usually subsides within an hour.

Episode

2010-04-06T12:16:00.000-07:00

having a not so fun episode today. Lying in bed and felt suddenly chilled. Began shaking badly and felt I might pass out. Heart thumping real hard and fast in my chest. I managed to get to my feet and hobble to the kitchen to check my heart rate..it was 120. I ate something and had some cold water which did help slightly, then laid back down. I still feel very shaky and weak. Not sure what happened but will keep an eye on my heart rate and call for help if it gets much worse.

Fed up

2010-04-04T04:15:00.001-07:00

After several very bad days in a row I have become fed up with the 'wait and see' approach regarding my treatment. My main goal now is to get to San Diego for hyperbaric oxygen therapy as quickly as is humanly possible. In my effort to raise funds I have contacted radio stations, news stations, friends, family, my former boss and the administrators for several online message boards I belong to. My plea for assistance has been neither polite nor watered down. I am desperate, my life is in danger, and I will not rest until I receive the help I need, or this disease takes my life.

insert foul language here

2010-04-02T08:20:00.000-07:00

My patience with the social security administration is wearing thin. I completed the first part of my second appeal electronically and printed confirmation and my re-entry pass code on the 25th of this month. The system would not let me back in today to finish the appeal stating that I had an incorrect pass code and would have to start the process over. I started a new appeal and the system would not accept "Jessica" as a legitimate first name, and therefore would not let me continue. I called the toll free number listed on their website and was told they have no tech support, and to finish my appeal I would have to go to their office and fill out the paperwork there, or have it sent to me. I am going to go cuss loudly now.

Tired and thirsty

2010-03-30T04:50:00.001-07:00

I've been having bad headaches the last few days and trouble falling and staying asleep. Even with the aid of acupressure and sleeping pills I am unable to stay asleep for more than a few hours at a time. My dreams have also been very strange. Last week I woke up screaming - something I don't recall ever doing before - even though the dream I'd just had wasn't particularly scary. My psychologist said it was probably a night terror. I really hope this phase of not sleeping well passes soon, as I'm getting weaker and more fatigued from lack of sleep.
Another strange symptom I've had for about a week now is feeling constantly thirsty but no matter how much I drink, my throat feels dry and my thirst does not go away. And my urine goes from clear, to dark and cloudy, to clear and back again. (shaking head)

Snnnaaarrrllll

2010-03-27T03:48:00.000-07:00

Doctor did not call me back on Tuesday and I have called her every day since requesting that she call me back (snarl). Her receptionist called this afternoon to set up another phone consultation next week.
Neuro symptoms are increasing again after a short break - Jerking legs and arms. I'm still walking ok without cane and have only needed my wheelchair once in the last week, so I hope that continues for a while. Right now I feel very "blegh". Tired but cannot stay asleep, heart rate elevated and some tummy trouble to go with the jerking limbs. Fun!
Some good news tho, I finished the first part of my appeal for disability online. The second part is a bit more involved but can also be done online. Whew!

Senovabeach!

2010-03-22T18:45:00.000-07:00

Today has been especially tough. After an early appointment I came back to the house to rest and wait for my phone appointment with my doctor. She was 30 minutes late calling me and I was so weak and exhausted that I fell asleep waiting. The ring was not enough to rouse me tho I did hear it faintly, as if in the distance, I just couldn't move. She did leave a voice message but it contained no information, and answered none of my questions. Ridiculous! She ended by saying she would call tomorrow afternoon. I certainly hope she does, because if not I'm going to be really pissed off!

trembling

2010-03-21T20:09:00.000-07:00

I have been feeling more run down than usual the last few days. About an hour ago, as I was standing in the kitchen my arms and legs became suddenly weak and began to tremble. Since then I have been having great difficulty walking and completing simple tasks such as typing, eating and drinking. Heart rate is within normal and I'm breathing well so I doubt I will go to ER this time unless it worsens. I also noticed that my urine is cloudy again. I will mention this to my doctor tomorrow.

2010-03-15T13:05:00.000-07:00

My pee returned to normal on Sunday, and I have not had to use my cane or wheelchair in two full days! Yay! Still anxious to come up with a game plan with doc on the 22nd and have been adding to my list of options to discuss with her as I do research of my own. My frustration has lessened a bit as I'm trying to focusing on other things until my appointment.

Grrrrrr

2010-03-12T23:28:00.000-08:00

I am feeling major frustration today. After exchanging emails with my doctor, we are no closer to a game plan for dealing with the porphyria that is interfering with my lyme treatment. My legs are responding a little better today after spending most of yesterday in my wheelchair, and I have not used my cane since I woke up, but am in more pain. My pee has been sort of milky/cloudy since yesterday. I have noticed this several times in the last few months, and I'm not sure what it means. I will bring it up with my doctor at our next appointment on the 22nd of this month.

My excitement for the week

2010-03-07T15:28:00.000-08:00

A sudden gust of wind during this afternoon's storm ripped the tar off of almost 1/4 of the roof a few hours ago, sending rain water pouring into the attic and onto the porch. I managed to get up the ladder with my dad and we ran plastic sheeting up under the edge of the remaining tar and stapled it down. It only took about 10 minutes, but by then everything on the back porch was completely drenched. My music, books and papers all soggy. Dad called my little brother Drew to come help and once he arrived I got down the ladder and pulled the aluminum trim that was ripped off out of the drive way. By then both legs were shaking badly and about to give out. I made it a few feet from the porch before both buckled. With some effort I was able to crawl inside where I rested for a few minutes before attempting to stand again. No go...so I got to my wheelchair and hoisted myself into it. it has been almost 20 minutes and my legs are still shaking and I'm unable to really move them without help. I'll likely be in my chair for the evening, and maybe a bit of tomorrow.

Hitch

2010-03-01T15:01:00.000-08:00

I am noticing lately that my left leg seems to be considerably weaker and harder to balance on/control than the right. This causes me to lose my balance mid-stride and take a few side steps to correct. It also makes rounding corners difficult - I bump into walls - and leaves my gait very halted and uneven. Nurses at the hospital said I have a 'hitch' in my walk as they saw me on the treadmill, my left leg lagging. I am considering purchasing a cane for use around the house.

New Symptom

2010-02-28T12:03:00.000-08:00

In the last 3 weeks I have developed a new symptom. Jerking in my legs and feet. I have had muscle twitches and spasms for years but this is different. It feels the same as when my reflexes are tested by tapping below the knee, only the lower part of my leg just jumps at random without any outside stimuli. sometimes it's just from the ankle down. It is very bizarre to be lying in bed and see both legs suddenly leap up as if startled.

In other news, I purchased a wheelchair today. My legs have been so weak and with the jerking I do not feel steady on them so I purchased the chair so I can still have a bit of freedom outside the house if there's someone around to push me.

Pothole

2010-02-13T22:37:00.000-08:00

I have hit not a speed bump, but a pothole on my road to recovery. After nearly 3 months of pain, appetite loss and severe weakness I feel I am about to lose my mind. I have lost 10 lbs and have been in the hospital twice with heart palpitations and trouble staying on my feet. My doctor believes I may have a rare blood disorder known as Porphyria. The type she suspects I have is acute intermittent which means it comes in the form of painful "attacks" which can last for days or weeks. Testing to determine if one has this can only be done in the worst part of one of these attacks. I have the kit to test at home and am waiting for an attack..after that it will be several weeks before the results come in. In the meantime I have gone off all of my Lyme meds, as my body is simply too weak to handle the herx reactions :(
I have been attempting to broaden my circle of support by calling friends and family in town for help with fund raising and emotional support. But most of my contact has been either brushed off or completely ignored. I am now looking once again outside my dwindling circle :( This is a sad time for me....one I look forward to overcoming.

Here is an excerpt from Genetics Home Reference about Porphyria:

"Porphyria is a group of disorders caused by abnormalities in the chemical steps that lead to heme production. Heme is a vital molecule for all of the body's organs, although it is most abundant in the blood, bone marrow, and liver. Heme is a component of several iron-containing proteins called hemoproteins, including hemoglobin (the protein that carries oxygen in the blood)."

"......acute porphyrias, primarily affect the nervous system. These disorders are described as "acute" because their signs and symptoms appear quickly and usually last a short time. Episodes of acute porphyria can cause abdominal pain, vomiting, constipation, and diarrhea. During an episode, a person may also experience muscle weakness, seizures, fever, and mental changes such as anxiety and hallucinations. These signs and symptoms can be life-threatening, especially if the muscles that control breathing become paralyzed. Acute porphyrias include acute intermittent porphyria and ALAD deficiency porphyria. Two other forms of porphyria, hereditary coproporphyria and variegate porphyria, can have both acute and cutaneous symptoms."

pluggin' along

2009-12-27T02:46:00.001-08:00

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

2009-12-09T15:14:00.000-08:00

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

2009-11-15T12:53:00.000-08:00

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

2009-11-05T10:14:00.001-08:00

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!

2009-11-02T07:28:00.000-08:00

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

2009-10-25T18:30:00.000-07:00

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!

2009-10-19T07:14:00.000-07:00

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

2009-10-06T10:15:00.000-07:00

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

2009-10-02T02:05:00.001-07:00

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

2009-09-24T20:18:00.000-07:00

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!

2009-08-01T18:55:00.000-07:00

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

2009-07-31T12:47:00.000-07:00

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

2009-07-20T12:15:00.000-07:00

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

2009-07-15T19:56:00.000-07:00

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

2009-07-14T11:23:00.000-07:00

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

2009-07-13T07:44:00.000-07:00

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

2009-07-12T08:22:00.000-07:00

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

2009-07-10T04:52:00.000-07:00

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

2009-07-02T23:10:00.000-07:00

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

2009-06-29T10:38:00.000-07:00

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

2009-06-28T18:50:00.000-07:00

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

2009-06-17T10:43:00.000-07:00

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

2009-06-16T11:05:00.000-07:00

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

2009-06-15T10:07:00.000-07:00

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

2009-06-13T08:08:00.000-07:00

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!

2009-06-12T09:34:00.000-07:00

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!

2009-06-11T05:44:00.000-07:00

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

2009-06-10T08:55:00.000-07:00

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

2009-06-09T08:54:00.000-07:00

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"

2009-06-08T02:00:00.000-07:00

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

2009-06-07T08:48:00.001-07:00

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

2009-06-07T00:21:00.001-07:00

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

2009-06-06T01:02:00.000-07:00

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

2009-06-04T16:57:00.000-07:00

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

2009-06-02T17:40:00.000-07:00

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

2009-06-01T23:19:00.000-07:00

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

2009-05-30T14:12:00.000-07:00

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

2009-05-29T14:50:00.000-07:00

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

2009-05-24T18:31:00.001-07:00

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

2009-05-23T13:51:00.000-07:00

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

2009-05-22T16:55:00.000-07:00

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

2009-05-19T09:47:00.000-07:00

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

2009-05-17T08:03:00.000-07:00

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

2009-05-16T06:20:00.000-07:00

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

2009-05-15T05:48:00.000-07:00

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?

2009-05-12T14:31:00.000-07:00

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

2009-05-12T08:38:00.000-07:00

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

2009-05-09T19:51:00.000-07:00

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

2009-05-08T20:00:00.001-07:00

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

2009-05-07T17:28:00.000-07:00

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

2009-05-06T09:35:00.001-07:00

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

2009-05-05T21:00:00.000-07:00

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!

2009-05-05T02:16:00.000-07:00

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

2009-05-03T01:52:00.001-07:00

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

2009-05-02T18:41:00.000-07:00

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

2009-05-01T15:10:00.000-07:00

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

2009-04-30T19:53:00.000-07:00

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

2009-04-29T17:29:00.000-07:00

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

2009-04-28T22:07:00.000-07:00

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

2009-04-27T18:39:00.000-07:00

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

2009-04-26T15:36:00.000-07:00

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

2009-04-25T22:46:00.000-07:00

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

2009-04-24T22:46:00.000-07:00

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.

The Daily Slice

Court Hearing

WTF???

Kidnapped....

Gail and Roy Pruitt are awesome!

Charity drive complete!

Charity drive - day 16

Charity drive - day 12

Charity drive - day 11

Charity drive - day 10

charity drive - day 8

Charity drive - day 7

Charity drive - day 6

Charity drive - day 5

charity drive - day 4

Charity drive - day 3

Charity drive

Merde

Losing "Me"

Is it June already??

Zoning out

Changes

*#%@&%(!!!!!!

Yay!!!!

A weird day

Episode

Fed up

*insert foul language here*

Tired and thirsty

Snnnaaarrrllll

Senovabeach!

trembling

Grrrrrr

My excitement for the week

Hitch

New Symptom

Pothole

pluggin' along

yucky bout

:-P

Yuck

My pup!

Back on Samento

ow, ow, ow!

Missing Grandma

A change

Update

It worked!

Insomnia

Herx # 2

MSP dose 2 plus probiotic

Whew

MSP Herx

A little better

Painful setback

Silver lining

How Lyme Works

Reprieve

Blaahhhhh

Granola bars

A good day

Zombie

I'm a moth momma!

Darn it!

Heat

Mandala

"But you don't LOOK sick"

Fantastic news

Cycle of my life

Herxheimer

Trouble breathing

Herx reactions

Sleeping

Weary

A tough day

More nightmares

Nightmares

Blaaah

Worn out

A good day

insert foul language here