WTF???

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....

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!

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!

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

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

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

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

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

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

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

Donations: $50.00
Pledges: $0.20

Charity drive - day 6

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

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

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

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

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

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"

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??

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

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

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.

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

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!!!!

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

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

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

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*

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

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

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!

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

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.

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

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

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

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

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

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."