Thursday, July 28, 2011

Communicating is so unbelieveably hard!

Over the last few days it has become increasingly harder to communicate. Finding the right words to effectively interpret my thoughts and ideas into words and sentences... just ask anyone who has talked to me yesterday or today! So anyway, I guess I'm entering that phase... Ugh. Doesn't this disease know not to mess with a Gemini, a natural communicator! I need to communicate, dammit! This is frustrating beyond belief!

Something is wrong when it takes you a half hour to do a Facebook post! (Almost 2 years ago, at my worst with this symptom, it was 2 hours!) All I was trying to do was write a few lines! Once typed, the words didn't look right. The spelling looks wrong (but it wasn't), the context seemed wrong, the sentence doesn't make sense, am I conveying the right message, etc. WTF! Thank god, there's nothing wrong with me... it's just the Lyme!

I forgot to mention about how even though I may have just spent an exorbitant amount of time attempting to do a FB post, the possibility that I would just get to a point of extreme frustration and give up is highly likely, in excess of 80%. It may appear to others that I don't care about them enough to keep in touch, but that is far from the case. I want to be more social, I just don't have that ability all the time!

Let me also add that I'll have periods where this particular malady is completely reversed. This is why people who have seen me during both extremes can become confused, and sometimes, quite judgemental. They just don't understand. It can be so ironic, because in order to enlighten someone in this area, you need to have adept conversational skills.

Today, anyway, I'm good as long as you're not trying to talk to me. I seem to be handling typing this monologue okay. One thing I must add is that only I know how long it is really taking me to think of the things I want to say. Let's just say that it's taking a lot longer than it should be. If this was a face-to-face conversation, every person I know would just give up after awhile. First though, they would be either completely lost, pretend to be listening, or get distracted by something else. It hurts. It hurts, and I have no control over it.

I've been also known to say something the wrong way and someone else is hurt or offended. So, then it is my fault then. This is when I demand telepathy! But who knows? It's very possible that my mind might seem like a mess of tangled up thoughts, unable to be retrieved and deciphered.

I did not want to feel antisocial today. It has been more of a forced antisocial day. I have lots of stuff I want to say to many people, but it just wasn't working well conveying those things across. So I just found something else to do. Good thing I've had my beloved music to enjoy again. I can't stress enough how delighted I am to not be repulsed by any kind of music! It's so wonderful to not think of it as noise! It's been like I've reconnected with a long-lost friend... I haven't had my headphones out of my ears during much of the week!

So, while one symptom (or several symptoms) acts up, others go away (or at least subside). That's how it happens. When the severity of such symptoms diminishes over time, you know that you're getting better! Which, I am!... it's just painfully slow. And hard.

Tuesday, July 26, 2011

...continued

Sometimes I feel detrimental to my own health. Self-sabotage. What the hell is up with that? Why do I feel such a strong urge to do things that are bad for me? Now, I feel that, more than any other time in my life! Like, out of no where, I feel the most intense urges to eat foods that I shouldn't, stay up too late, push myself too hard, drink when I shouldn't be drinking at all, etc... What is up with that?

Lately, some new medicines have been contributing to my lack of appetite, and/or food intolerance. So, in other words, it has been even harder for me to get my nutritional requirements. Lately, I plainly just hate food. Eating has been a job for me for over a year now, but lately it has become a dirty job! Believe me when I say how nothing sounds good! It's quite interesting how you can feel hungry, but be unable to eat. Perplexing...

So, to summarize: I cannot sleep (although I'm very tired), I cannot eat, I am in pain, I am weak, I have an ultra-short attention span, memory loss, cognitive difficulties, disturbing mood & personality changes/swings, my skin has constant burning sensations, I have chills/fever + day/night sweats, extreme photo-sensitivity, etc, etc, etc....

Most of the time, I feel too awake to sleep any more, but much too tired to wake up and do anything. Sometimes, just sitting up in a chair is too hard. Or, even just moving my arms. Usually, my upper body is way weaker than my lower body. And, believe me, this has nothing to do with deconditioning! I don't care what they say, but Lyme disease is so much different than any other conditions. Because of the life-cycle of the borrelia bacteria (the Lyme bacteria), while I'm in the phases where the bacteria is dormant, I will experience periods of almost complete reversal! (It's quite another case when the bacteria is active and multiplying...)

Also, in the last few years I have become ultra-sensitive to pretty much everything; sights, sounds, smells, touch,- you name it! My nervous system seems to be on fire all the time, even though I've been taking medicine to help diminish that very thing. So, basically, live has become quite uncomfortable.

Maybe it's because I've been living with many of these horrible symptoms that
I've suddenly become so defiant about taking healthful/beneficial measures in effort to combat my disease. I guess it sure can be hard to keep up with a program that you feel little or no benefit. For instance, I really cannot tell the difference if I'm taking my supplements or if I am not. Besides, taking all the supplements that are recommended for a Lyme patient, and at the correct times and dosages, can be a full-time job in it of itself. Trust me, it's A LOT of work!

I just know that me and restrictions do not mix well. I have a tendency toward defiance. Even more so if the benefit does not seem to justify the means. Yes, I know that "they" might say that certain things or behaviors will be either beneficial or detrimental to a Lyme patients health, but... do "they" really fully ever understand the physiology that is going on inside their Lyme patients head? Why It can be so difficult, if not impossible for their patients to follow said regimens? Speaking from personal experience, I know. Depending on where you are in the Lyme cycle, that pretty much determines whether or not you have the capacity or the wherewithal to stick with your program.

I feel so alone

I feel so empty. So alone. I guess that's not out of the ordinary for someone with a chronic illness. Extreme isolation sort of happens. It's hard to relate to others. It's not like I want to sit here and feel sorry for myself or anything, but... I kind of guess that's what I need right now. I need a bitch session.

Here goes it... For one, my pain and anxiety has reached a new high. Anxiety is a symptom that I haven't had in quite a long time. Oh, what I wouldn't do for some Valium or something!

Another thing... how can you feel so anti-social, but at the same time crave it? Maybe it's that I've lost the ability or confidence to relate to the outside world, but I still feel a huge void, a desire to connect, to be accepted and completely understood.

How is it that I want to talk to someone, but I'm not sure about what I want to talk about? I know in my heart that I need to get something off of my chest, but am not sure about what that may be. Plus, dealing with my lately inability to retrieve the right words just adds to my stress and overall frustration. It's almost impossible for someone that has never personally dealt with chronic Lyme disease & it's co-infections to even try to grasp this hell. I am a prisoner in my own body, in my mind. This is why I pray for death to come soon, since this is HELL. Sometimes, I do not know how I will go on.

Somehow, I seem to persevere. Sometimes, I feel that I'm just prolonging the inevitable, which is a slow, painful, and arduous death. I feel like I am being punished. God, how I would only just like to know my crime! Please understand that I cannot live too much longer like this!

One thing that I am very thankful for is the ability to at least enjoy my music! OMG, for like, over 6 months, even my favorite music sounded like noise to me! Coming from someone who gets through life with music, not being able to do that was unbelievably painful! Music is how I cope. So, my life sucks, but at least I can try to get through it with music.

Lately, I've been healing with tunes from my all-time favorite group, Muse. God, how I am so very grateful for being introduced to them a while back... They seem to have songs for whatever mood I may be in.

I am also feeling sad from my beloved grandpa's passing, and my (also beloved)cousin's Army deployment to Kuwait. I'll admit that I am not someone who knows how to successfully deal with emotions, so... maybe that is why I am so screwed up!

Even before I was sick, I lived a life of profound emptiness and pain. Honestly, I cannot wait till it's over. I'm ashamed to say, but the pleasures in life have not mitigated the pains and sorrows.

Yes, I know that one's happiness is within themselves, but all too often that very concept seems way out of reach. Sometimes, just when you think you have it, it is gone. A delusion in it of itself.

I keep on asking myself what I am doing this for. Yes, maybe it is because I do not want to let my family down. Maybe, in my heart of hearts I really do believe that I deserve a life of contentment and true happiness. Gosh... I wonder what that would be like..

For starters, a life without constant pain would be good. To have my personality and complete neurological function restored would be more than okay. Plainly stated, I would just want to have my life back. I just would like to have some happiness, some pure bliss. Yes, I know that bliss is within myself, but if I could just have my mind back, maybe that goal would be attainable!

Saturday, June 18, 2011

I AM HURTING!!!

I AM HURTING, and, NO, I AM NOT COPING, and yes, I AM DESPERATE!!! I am in PAIN, both physical and psychological. I am weak, fatigued, and just burned-out. No, life is not good. Life has never been good. I hate this shell-of-a-body! I just want to get out of it! To be free...

When can this be over? When? Please, I've just had enough! I am sick of living in a world without love. A world without compassion, caring, and understanding. This is hell to live in a world with raging egos! A world with judgements, misunderstandings, personal agendas, and manipulations. I'm so sad... I've had enough.

That pretty much sums it up for today. So I, tearfully, will sign off...

Friday, June 3, 2011

I am in hell

I say this in the most frank way possible... I am in HELL!... I am in PAIN! I didn't get much sleep because I just couldn't get comfortable, so I am also tired. What a great combo! Anyway, I am anxiously awaiting my appointment at the pain clinic on Tuesday.

This is an all-encompassing, nauseating, anger-inducing pain that lately seems to be getting worse and worse, plus it has taken over my life! I can't seem to find any meaningful activity for me to do, since each one seems to eventually worsen the pain, whether it's my back, neck, hands/fingers, head, hips, knees, belly, whatever... Plus, again, I can't sleep either!

This is why I have become so angry! I feel that it is totally justified, by the way. I just want it all to go away... all this suffering and miserable-ness. I'm feeling hopeless again. Like, how much longer can I put up with this? When will it end? Assisted suicide seems like a really awesome thing at this point. However, I just heard that Dr. Kevorkian has died. Unless he has some other doctors that were working with him here in the U.S., I may be forced to travel to Switzerland. They are compassionate toward ending suffering of those with debilitating, chronic, and degenerative diseases in that country, unlike my own country. Good luck though!... Like I've got several thousands of dollars laying around that I could make that trip!

Plus, this never-ending humidity is killing me! Of course, in this time of my life, I am unbelievably sensitive to weather, especially humidity. It's just adding to my pain and suffering. But, where else am I going to live? I'm sort of dependant now...

I also get really, really angry about the cost of recovering from chronic Lyme. One thing, I am super lucky that I have a mom that is willing (doesn't mean she likes it) to spend the huge amounts of money for my supplements, all very necessary, to help get me to a (hopefully) full recovery. I can't ever forget that. But I do feel so damn guilty! It's just not fair! She shouldn't have to do all this! It's just not right...

Dr. Burrasanco, Jr. is one of the doctors out there (a Lyme-literate MD - LLMD) that has been treating patients with Lyme and other tick-borne illnesses for longer than probably any other doctor. He is the sort of go-to guy regarding this subject, providing insight and information to other doctors around the country. Anyway, his paper "Managing Lyme Disease", 16th edition, October 2008 goes way in-depth about testing, the antibiotic options, the various co-infections, the needed supplements and therapies, etc.- he covers it all. It's 37 pages of extremely interesting and useful information.

For instance, many of the supplements he recommends or says is 'required', I am already taking. But some of the ones I'm not taking sound like they would really benefit me, problem is they cost more than the ones I'm already taking! Ugh! What do I do? It's already costing around $500 a month. The additional ones would tack on to that another $300+

YIKES!!!

What is the cost of improving suffering, managing symptoms, improving quality of life, speeding up healing process, restoring function, and reversing bodily damage from: the illness, medications, environment, bio-toxins/man-made toxins, and allergens?

It's just not right...

Friday, May 27, 2011

Honestly, It's been ugly

I need to go back on my antibiotics!! In the last couple of days it has become quite apparent that I am really getting sicker and sicker as each day passes. The problem is, and the main reason that I have been on this antibiotic holiday (a little over 2 months now) is because of my systemic, super-yeast problem that I can't seem to get control over. My deadline is June 23, when I see my doctor again. I had hoped that by then I would have taken care of this yeast problem and would be able to restart my antibiotic regimen. That is the plan. However, that date is fast approaching and I'm getting worried. Just when I think that I'm making progress, like, that next day I wake up with a raging case of thrush or a vaginal yeast infection. (Or both...) Yuck! Yikes! I've been taking Diflucan every day, or almost every day now for 2 months, plus 60 billion cfu's of pro-biotics 2x/day. Plus, I just started brushing my teeth with pro-biotics sprinkled in, plus gargling them with distilled water. I read about how that can be really helpful for tough cases of thrush. I'll try almost anything once to see if it works for me. The thing is with treating chronic Lyme, you basically have to try a lot of different treatments to see which ones work for you, since we all have different cases and body chemistries.

I just get so frustrated sometimes when I feel that I've been putting in a great deal of effort and it feels like I'm not getting any kind of payoff. Like, it's just not worth it. I'm already so energy depleted, how can I keep up with all the protocols and restrictions. I feel so deprived! I mean, just having this debilitating disease deprives me of having a productive and meaningful life! Sometimes, I just want to rebel! It's so not fair...

I truly resent healthy, able-bodied individuals who are wasting their life away or not living up to their true potential. It drives me crazy! A lot of people out there take so many precious things for granted. I should know. I used to be one of them. Look where it got me!

Right now, I am sitting here typing at 12am because I needed something to do to get my mind off this headache from hell. I hated to take more Excedrin Migraine after 10pm, since I am greatly affected by the relatively small amount of caffeine in each tablet. So, most likely I will be awake for a while. I used to be a night owl, with my circadian rhythm total backwards. But that was almost a year ago... Now I usually get to bed around 10pm, read or watch a movie or show on my iPod or computer and fall asleep to it, usually by 12am. It's not good for Lyme patients to be sleep deprived or over extended.

So, what can I do? Having a headache like I've had, there's no way I could get to sleep. And it's not just the headache. It's also the back pain, neck pain, bone/joint pain... I did make an appointment at the pain clinic. I haven't been there in over a year, since I had been managing my pain on my own. But for the last few months it has gotten out of control. I can't live like this. It's making me go crazy!

I'm all about symptomatic control while treating Lyme and related co-infections. It's about quality of life. I should be made as comfortable as possible if I am to completely follow my treatment protocol. It's been hard for me lately, since I've been feeling like all the joys of life have been taken away from me or have become forbidden. I'm like an immature child who when is told that they can't have something, I just end up wanting it more. Craving it. Whether that something is sugary-sweetened foods or beverages, breads, carbs, alcohol, cigarettes (or nicotine gum), caffeine, whatever. Tell me I can't have it, and I want it. Even if it's something I'd otherwise not care about.

I'm an observer now. I watch other people do stuff that I wish I could do. Stuff I would be doing if I was healthier. I live vicariously through others, I guess. Maybe that's why I feel so resentful towards those able-bodied people who waste their opportunities. My mom just got a beautiful bicycle... I am so jealous! I would love to ride marathon trips like I used to, back in the day. She said I could borrow it anytime, anytime I feel up to it. It is super light, so maybe I'll have to try it out a bit. I have been walking, for about 15 minutes, at as fast of a pace as I can do, whenever the weather is halfway decent. My dog benefits as well. He loves it! However, I seem to get much more tired than he does. Oh, well. I'm trying. Doing my best.

My goal each day is to do whatever meaningful activity I can do. My activities vary, depending on whatever symptoms I'm suffering with. I don't want my symptoms to get the best of me, I want to rise above them. But that can be quite difficult though. Before I got sick, I was a super active person. I hate it when I want so badly to be active, but my body just won't cooperate. I miss certain aspects of my old life more than you can imagine!

It's heartbreaking for me to hear my ignorant, self-centered step dad spew garbage out of his mouth, words eluding to my laziness, worthlessness, and the like. If he only knew... Unless you are willing to educate yourself about my condition, please refrain from making judgements.

I hate to rant and rave about this and that, how difficult and dreadful my life has become, but that's where I am right now. This is my outlet. I do not want to complain and burden the important people who are close to me; I need them. I need their support. I do not want to push them away, God forbid. But, I've got to get these feelings out somehow or they will sit inside me and become a poison, ready to manifest into something so ugly, God only knows...

I'm in constant, awful pain (of many different types & locations on my body). I'm exhausted all the time. Most of the time, I'm too weak to climb the stairs (16 steps), or walk to the bathroom, or prepare food, or take a shower, or even hold a book or sit upright in a chair! I have constant mood swings, severe cognitive deficits, personality changes, my skin burns, I have night sweats but I'm abnormally cold during the day, I'm extremely sensitive to weather changes (especially low pressure & high humidity), I'm super sensitive to noise, light, & odors, I seem to be allergic to almost everything, I am dizzy and I run into things all the time, I have double vision and other visual disturbances, I have fevers with chills... need I say more?

I long for the day when my life is not ruled by Lyme disease and its laundry list of crazy symptoms. I remember my life before all this... I have to remember how it was before. That's what I'm holding on to. I just want to get that back. Somehow. It's just that this recovery period seems to be taking so long. I'm starting to lose patience. God, how I wish this would have been detected earlier. That the doctors I was seeing years ago when I first started to get sick, that they were more educated in tick-borne diseases. That is why I have become so passionate in educating others in this area. That it has become my mission to help guide others like me to wellness. If I could help avoid suffering to others who have Lyme or think they may have it. If I could help them by giving them resources, direct them to Lyme-literate physicians, offer support or a shoulder to cry on. Something. If I could turn my hellish situation into something positive, pay it forward. Make it meaningful.

With that, I'll close.

Tuesday, May 24, 2011

Mental battles...

So, last night I saw my natural doctor. I hadn't seen her for over 2 months, and honestly I was dreading my appointment. Just because for the last few weeks I have really fallen off the wagon and I have basically been in denial, secretly hoping that I'm beyond help and I will just quickly succumb to this disease- that it will all be over soon and there's no use in taking all those supplements or adhering to my ridged diet.

My logical mind says that that type of thinking is immature and weak. My illogical mind disagrees emphatically. The thing is, up until a few weeks ago that illogical mind has been totally taking over so that my logical mind has been diminished to a tiny little whisper.

Anyway, so yesterday, even though I was so dreading my appointment, as soon as I walked into the door, I felt a massive energy shift. A positive, empowering, healing energy shift. What a difference! So, I came clean, worked out a new game plan and left feeling really good. However, almost immediately after getting 'home', all was lost. I say home with quotes because where I am staying is not really my home. It is my mom's and her husband's. Her husband is the problem. Talk about negative energy! Whooo!!! It is very sad, I see him as a very lost soul. It has been impossible to get through to him. I wish I could just help guide him, but his anger has been impenetrable. He is like a really dark black cloud, a force. I just don't have the energy to overcome that negative force every day, especially when I need every bit of energy just to heal! Ugh!

I'm exhausted. Part of me just doesn't care anymore. Wishes that the world will end today. Needs relief of the prison that is my sickened body. Tired of being on the sidelines and watching the rest of the world go by. Reached my limit. Enough. When will this be over?

The other part is still hopeful. I have a chance at beating this. Be strong, you can do this! Channel those energies into meaningful actions, like reaching out and helping someone. It's really worth it to take the extra energy to follow my diet and take all my supplements. I can do it!

So, this mental battle ensues. God give me the strength to overcome! That's all I have to ask right now.

I just have a major problem with people who take their anger and frustration on other people. I take out mine in this blog. My only wish is that others around me gain a little perspective and compassion. Really, we all have our own struggles in life! No one person's struggles are more important than someone else's. But to each of us, the pain of dealing with those struggles are equally painful and trying. The important thing is to recognize that fact and try to epathasize a bit. The world would be a much better place if everyone did that!

The problem is the ego. I consciously live every day keeping my own ego in check. That is how I am capable of having and giving compassion, unconditional love, forgiveness, empathy, and selflessness. I know in my heart that even though I am suffering greatly, there are others that are suffering in their own ways. Knowing this, it just isn't possible for me to project my own anger and frustration over my suffering and helplessness onto others.

I may not have my health at this time, but one thing I do have is perspective. I also understand that before I got ill, my life was out of control and totally heading in the wrong direction. I had no perspective. My priorities were definitely in the wrong areas. Maybe, my illness was needed. Needed for me to gain perspective and to change my priorities. I know that things happen for a reason... that doesn't make dealing with those changes any easier! Especially I must note that I DID NOT CHOOSE THIS SITUATION! Just because maybe it was my soul's path, doesn't mean that my conscious self put me into this horrible situation!

I would give anything, anything to be in a perfectly healthy body right now! I envy, I resent other healthy and able-bodied individuals, to be perfectly honest! My anger comes from people like my step-dad who, in his own ignorance and self-righteousness, doubts that. How can I get him to stop believing that everything I do is to piss him off? Unbelievable! Just get over yourself already! The world DOES NOT REVOLVE AROUND YOU! God loves us all equally, we are are inter-connected and equally important!

So, the battle ensues... Wish me luck. I can't let the bad energies get to me. I must overcome and rise above

Friday, May 13, 2011

Just give me some good distractions please!

Just as I was starting to enjoy my pain lessening, feeling invigorated and relieved, it migrated from the back to my neck. Ugh! That classic, Lyme-associated stiff neck. Well, "stiff neck" doesn't even begin to describe it! It's like, rather, "neck hurts like hell" neck. Can't find a comfortable position, although I can't seem to help myself trying, heat or cold compresses useless, plus every time I seem to move it, it creaks and cracks and sometimes that makes it hurt even more! The only thing that helps, so it seems, is to find something, anything that I can get completely absorbed into mentally. Whatever. I gravitate towards either: A really awesome book, an engrossing movie (documentaries are my choice), a challenging game of Scrabble, a fun jig-saw puzzle, anything that appeals the most to me at the time.

What has been working for me today and last night has been watching documentaries. OMG! I just kept finding so many good ones to watch that last night I stayed up until almost 4am! Thank you, Netflix! This is how I educate myself when reading a book is difficult. I was just really getting into the "social/cultural" section and the "fight the system" section. I really LOVE the ones produced by small, independent filmmakers. The information provided is more accurate than the larger-budget films. Also, the smaller films aren't trying to brainwash, they're by activists trying to educate. That's what I'm all about.

I have been so moved by what I have seen that I've taken it upon me to remember my mission in life, my life's plan. What I've got to keep reminding myself is: I cannot ever really enjoy the good things in life until I've gone through enough time of true suffering, then the good will be unimaginably wonderful and not just plain old good. Also, to really ascend spiritually it takes that I've got to get through this, the pain, the suffering, the agony, by channelling my higher self and getting outside of it- getting outside my mind, gaining in spiritual knowledge and awareness. Rising above. Plus, even though this world is pretty messed up and there are institutions, forces, people, etc. that have been corrupting this world with no end in sight (other than maybe a giant comet wiping everything out in its destruction...), there still is hope. I can't give up or feel down because it seems like the paradigm is starting to switch. More and more people seem to be opening up to new information. They're starting to question authority. They're eager, receptive, hungry for truth.

So, since not everyone is a truth-seeker like me, I've got to constantly submerge myself in books, podcasts, lectures, or documentaries so I can sift through it all and find the resonation of truth within it- all so I'll be someone that can pass on, educate, and inform others and help them to take off their blinders, their masks or earplugs and wake up to the true reality. Some just need to get out of denial, out of their mind-programming, away from their pride/ego to be receptive to this world-altering, invigorating new information that in the end will give us a chance out of this hell. And it's going to take so much persistence on my part. I can do it. What other choice do I have?

I know that I'll still probably have those days here and there where I just can't seem to act or think courageously, but the majority of the time I will. That happens, the mood swings and personality changes- they go through cycles, during my Lyme cycles. I'm used to it. I hate it, but I'm used to it. I try to use humor whenever possible also. Laugh at myself. Laugh at the ridiculousness of it all. Those woes pale in comparison to what's next to come...

Words of wisdom: We the people of Earth need to unite and work together, since we are are sparks from the same God- we all have God inside of us! Life is precious, the Earth is precious, so is love (true & unconditional), family, togetherness, relationships, and our experiences. All should be cherished.

Greed, power, control, and selfishness have gotten way out of hand on this planet- and for far too long. We all need to start learning from our personal and collective mistakes. Remember our history, understand it, then forget about it and transcend the boundaries of what we thought was impossible.

Stop buying useless stuff from corporations that only have themselves in mind, not the health of us or our precious planet Earth. Don't let yourselves get brainwashed from advertisers (especially commercials on tv) trying at any measure to get you to feel inadequate and that you've just gotta have that, whatever it is that they're trying selling us. They're really selling you only your ability to be controlled. Master manipulators they are. It's all about power, control, and money of course. That's all. But in the end we're being destroyed and everything that we hold dear to us. Like the sacred family bond, our individual freedoms, and our sanity, for instance.

I don't know about you, but I'm not the type of person to allow myself to be controlled or manipulated. I am not a sheep!

Wednesday, May 11, 2011

The weather is painful

Like other "Lymies" (people w/ Lyme, tick-borne illnesses), changes in the weather affect my symptoms tremendously. Making matters worse, the climate where I am currently living has got to be one of the worst ones, due to its humidity levels. I grew up here and never had a problem with it until I became sick. Now it has become something I completely loathe because of the pain it ensues.

I literally feel it in my body, my bones, when the barometer switches. So, I have one thing in common with a lot of elderly people, only I'm 33! (34 next month) Anyway, it's just not right. I hate that I am so limited to the activities that I can do because of my pain. However, today my spirits are much brighter today than they have been in a while. So I'm miserable, but I'm still smiling :)

Anyway, there was a cool severe thunderstorm that rolled in last night. I've always loved severe weather for some odd reason. Fascinating to watch Mother Nature put on a show. The lightning was gorgeous! Clouds I haven't seen before, the colors... Reminds us who is really in control...

I guess I just love the sky. Love looking up into the heavens. All I hope for is a nice balance of fun storms and clear skies, so I can see the stars. It would be great if I could use my telescope a lot, even though my "Lyme Brain" has caused me to forget how to use it, or where the constellations are. But I'm not gonna let those minor details get in the way... (I hope anyway)

My attitude, mood, motivation, (even maybe sometimes my personality) changes so often that it's just really hard for me to stick with anything very long. The healthy Emily would definitely not be this way. I miss her. Please come back (soon), Healthy Emily!

Add to that the fact that my memory, plus numerous other neurological functions seems to have taken a nose-dive, symptoms worsening tremendously since I've been on my antibiotic holiday. It's been like, what? Two months? Almost two months I believe. Anyway, this (among numerous other symptoms that have also greatly worsened) has been extremely devastating for me. Can't remember much of anything, can't effectively communicate, etc. (At this exact moment I am feeling this extreme frustration for not even being able to chronicle the rest of the other stuff that has been making me feel so small and so devastated)...ironic

Everything. Everything needs to be documented. Written down. Or I will not remember it! Only problem is that when my hands, my fingers, the joints hurt so bad like they have, writing is hard. Thankfully, typing is better. Well, the way I type, at least. I'm slow, but I've got all the time in the world.

At least today, after a week, I am finally able to enjoy my fave music. Music is and has always been something so essential for me. How I connect, how I cope, how I relate. How I could get through with life. So, for the last week (or maybe for more than just 1 week) when I couldn't find anything that I could even tolerate! It all was just noise. Annoying noise. That's messed up. Another reminder of how this disease has just destroyed me! Ugh!!!

Maybe just the fact that everyday life is so hard to cope with, with the pain, the suffering, the losses of the person I used to be, with it all- maybe that's why my pulse is always racing! Every week, when my home-care nurse comes, she takes my vitals, (among the other stuff she does) and my pulse is always high. My low pulse, like when I'm not in a lot of pain, is in the 70's! My high ones are around 100! The other day, it was a record- 112! Wow. I used to exercise reguarly all my life and that just amazes me. At least my blood pressure is low. Almost dangerously low. Anyway...

Well it looks like the weather report is more bad news. The 80% humidity is not going away anytime soon. But, tonight it should storm. And rain. Rain for the next 3 days. Ugh...

Monday, May 9, 2011

Thoughts for today. The brutal, honest truth. My truth

Pain, pain just please go away. I'm so f'n angry and frustrated as hell! I hate being alive right now. I feel there's no way out of this utter misery. I couldn't find any meaningful activity to do today to divert my mind's attention, and that has just put me over the edge. What do you do when you're too fatigued to hold a book? The irony in this situation is that my mind feels more alert and clearer than it has in quite a while. That just pisses me off even more.

My bones and joints have been acting up as well, mostly (and oddly) my left pinkie finger. Weird, right? Well, it's so painful that it kept me from getting to sleep last night. And makes holding a book to read or do crossword puzzles, even without the fatigue, impossible because it's just so damn painful!

My spine hurts. The muscles surrounding it as well. The pain is making me go crazy! I try to cope my constantly adjusting my position, but it seems that when the back feels most comfortable, then my neck is acting up. Fuck! What the hell am I supposed to do?

Plus, every time I move my neck, it cracks (sometimes quite loudly, in fact) and hurts like hell. This loud cracking is paramount to Lyme patients in fact. At least I'm not the only one...

All I want is relief, be it a nerve-block, or death. I don't care. In fact, today I don't seem to care about anything. The one thing I do care about is ending this misery. That's all.

Yes, I definitely have a bad attitude today, an awful attitude. That's what happens when people get pushed and pushed. Pushed to the brink until they snap. Just can't take any more. Believe me, if my fatigue and just complete, profound, utter exhaustion wasn't also keeping me down, I might just take all these thoughts of mine into action. Well, for my loved ones, that's a good thing. I guess. Just because they can't ever completely understand. Not unless they go through this or something just like it themselves.

For all you people out there that love live so much that you want to live forever- you're fucking crazy!... and delusional, if you ask me. And, for those in that camp just because they are afraid to die- well, you need help and guidance. Probably a de-programming from a strict religious upbringing, too.

I know that life isn't meant to be easy for many of us, for before we were born we made that choice ourselves. And, maybe with the guidance from our Creator, as well. We also have free-will here, which can throw a monkey wrench into that equation. In my opinion, throughout the ages man has gotten crazy and out of control. The world has erupted into this brutal survivalism mentality, everyone out for themselves. Greed and evil brutality run amok. This has caused exponential collateral damages. For instance, it is becoming apparent to us that our planet is sick. Most of us are sick, too. In varying degrees. Sickness has almost become commonplace to many of us. That bothers me to the core. This was not supposed to happen!

I have come to know that I chose to come here, to help the people of this precious planet. But how can I help if my vessel (body) in which to navigate here has been maimed? Has been damaged, decimated, to which filling out my core mission has been compromised. Compromised to the point of where I feel lost. Pushed me to the point of giving up.

Ugh. I dunno....