I've got a lot on my mind today, which is sort of unusual. Mostly, I am emotionally drained. Physically as well. I had a busy and very stressful weekend. My sister was in town and we had plans for a send-off party for our cousin who is being deployed overseas. There was lots of alcohol, rich foods, and it was quite emotionally charged.

Even though I took naps and limited my intake of food and alcohol, it was still WAY too much for me! This is why it's just better if I stay home. I wanted to see my family, my grandparents, aunts and uncles, and cousins though. Plus I wanted to show support for my cousin being deployed. Don't get me wrong, there were many unforgettable and fun moments, but there were maybe more moments I would rather forget.

I love my family, but sometimes it is just too much for me to deal with right now. It becomes evident almost immediately that several of them represent the very qualities that are wrong with the majority of people in our society. I know they need my help and guidance, but I'm not sure if I can help them. God, is that frustrating! I've been praying for them and myself, so I can rise above. They need perspective and guidance.

I know my life's purpose is to show others the way. To teach, to lead by example. So, managing that while dealing with a debilitating illness can be more than overwhelming. Like today, I'm just ready to give up. I've had enough. My patience is depleted.

My sister was acting like such a diva the whole time she was here. I hope she gets her shit together soon because I don't think I want to see her again until she does. She needs to grow up and stop being such a pretentious bitch. Well, she certainly has a lot to learn.

I was lucky to have several days with more energy than usual, but in turn, my pain has been off the charts! My spine has hurt so much that I've had tears. Then, that spinal pain causes the surrounding muscles to hurt. I've been miserable. I have been thinking of going back on narcotics to treat my pain. It's a hard decision. I wish I could just get a nerve block or something.

Plus, my thrush is out of control. Spreading down my throat. Feels like a giant mouth sore. Sort of feels like strep throat, but not completely. Ouch. I've been taking my medicine, but apparently I consumed way too much sugar over the weekend. Sugar feeds the yeast problem. Because yeast multiplies so rapidly, it can become systemic easily. Also, when I'm away from home, I get off my routine. I forget about my supplements, like the pro-biotics. They will help. Well, I'm home now and I can get back on my schedule, but it's hard to do that once I get off it. I must get my priorities in order and rely on that inner strength.

I just feel so depleted that it seems that giving up and succumbing to this disease seems like the easier choice. I feel that I'm fighting a losing battle and it's just a waste taking the time and spending my precious energy keeping up with my supplement regimen and preparing nutritious foods.

My sister said such hurtful things that seem to have made a real devastating impact on me. Her holier-than-thou attitude, insensitivity, and total disrespect (all directed towards me) have scarred me. I know that she just directed all the problems in her life towards me. I'm an easy target. The same thing happens with my step-dad.

How can I get others, especially my own family, to understand? To evolve? To raise their consciousness? I want to help, but most seem so unwilling. When will they be ready?

Every day I am overwhelmed with my physical symptoms and I have to internalize most of them, because I do not want to burden my mother, my caretaker. She already has enough to deal with, but she is a great listener. So is my nurse, who comes here weekly. No one else in my life has the time or the interest it seems. I am so thankful to have outlets such as this blog and Lyme Connect. Online sources are definitely better than nothing.

I envy healthy people. People who are able-bodied and able to work. I miss working and having a social life. I miss being able to relate to the world. It really is awful to only being able to relate to other sick people. Limiting. I do not want to become my disease, but it's easy to feel like I've lost myself when my symptoms are so intense that they take over my life.

I used to meditate. But that was before my brain and nervous system became inundated and came under attack by the bacterias. Occasionally, I still try. At least I try some relaxation techniques. Not as effective as they should be. I wish I could just get out of this body. I constantly remind myself that I am not my body and that this body, as defective as it is, is just a vessel. A temporary vessel that I need to navigate while on Earth, in the 3rd dimension, to experience the physical.

I know that I can only permanently leave this body when my mission has been completed. I just feel stuck, since I know what my mission is and there is such resistance from the other people with whom my mission depends. Ugh! Come on people, open up! Lose your egos! Try getting your priorities straight and have some compassion and understanding, for starters.

Something positive

So, it's been something like 6 weeks now off the antibiotics. Yesterday I started my 2nd remission period since my drug holiday. Finally a break from all the hell! I'm so happy! Last time I felt pretty good for a little over a week and I hope this time will be similar. Oh, how I wish it could last a little longer... or just last forever... (a girl can dream)

One thing about not being on the meds is that I can have these remission periods. Usually, the longer they last is an indication to my progress in fighting this disease. So, it appears that I'm making pretty good progress, since prior to starting the antibiotics I didn't really have any remission periods. Yeah, 3 or 4 weeks from now I'll probably be feeling pretty awful, but that's how it goes. On the meds, I just felt more level. No extreme highs or lows. Sometimes it can be worth it to have those really great days though.

Also, I still have a pretty bad candida (yeast) problem. It's mostly in my mouth and throat (Thrush). My mouth and throat hurt and it feels like I've got a million canker sores. I've been taking Diflucan every day for a month and still... Yes, I should have been better at avoiding sugars of all kinds, since yeast feeds off sugar. But, the ironic thing is that when you have a yeast problem, you just crave sugar like you wouldn't believe! Plus, how do you pass off jelly beans or chocolate bunnies?

Once I get this yeast problem under control, I should start feeling so much better. Yes! I guess I didn't realize how bad it was. So, a lot of this extreme fatigue/exhaustion, weakness, skin problems & irritation,... has been from this systemic yeast problem I've had. So that means that I'm making better progress at killing the lyme bacterias (and those co-infections) than I thought.

I'm still taking the homeopathic vials. My nurse says that it sounds like they are really working. That's awesome news! I hate them, but if they're helping me, then I'll stick with them. I think I'm getting used to them since my herx reactions are getting lesser and lesser.

It was only 5 days ago that I felt so unbelievable awful that I called my dr and asked if I could go back on the antibiotics. Wow, what a difference a few days makes! I guess when I called, I was at my breaking point after 3 weeks of hell. My dr wants me to finish my vials and get yeast problem under control first before restarting my drug regimen. Sounds reasonable. So, probably around mid-June I'll be restarting.

In the meantime, I'm going to do my best to avoid sugar, eat nutritiously, take lots of pro-biotics, sleep lots, and try to stay focused and positive.

In the zone... literally.

Wow. Doing this homeopathic set is hard. I SO want to give it up, but something in me keeps taking those vials. It seems now, that about 24 hours or so after I take a vial (that's every 3 days) I'm feeling the worst. The worst seems to last about 2 days. I start to feel a little better soon before the next vial is due. Each vial seems to bring on a progression of both different and repeating symptoms, worsening in severity. My experience is proof that something is happening within my body. For instance, the fever shows proper immune system response. The lessening of symptoms prior to when the next vial is due seems to show to me again, proper immune system response.

Now, I must say, I have not gone to medical school. I do not have any medical credentials. But, as an individual who has struggled for information, for truth, for answers (good answers) about her progressive worsening and debilitating health, I have searched high and low. Sifted through all kinds of information. The credible. The bogus. Everything. I have developed a sort of sixth-sense, an eye for picking out the worthwhile stuff now. I am not invested in any theories or treatment, I have a very open mind. Therefore, I believe I am a good source on this topic. Trying to get insight on my deteriorating health, I spent many insomniac moments learning about the body. It's systems. Basically how things work. I feel I have a good understanding of what is going on inside and what Lyme and its co-infections are doing. The havoc they are wreaking.

Anyway, today started with profound weakness and pain with any sort of movement. I would've just stayed in bed, but I just couldn't sleep anymore. And, laying in bed, I felt awake. So, I got up. Dizziness, unsteadiness, loss of coordination... I was so hot sleeping last night, stripping down to just underwear, but not long after waking up I started the chill that just won't go away. It's been hours. Heating pad, layers of clothing, many mugs of hot tea... and still I'm struggling for some comfort.

I did that zone-out thing, the sitting and just staring into space thing (again)for almost 3 hours before I got up the strength and energy to get my computer out. Yes, my hands hurt typing, but my mind is temporarily occupied. Earlier, I tried reading a bit. I was getting too drowsy. I picked up several books up from the library yesterday. I read a lot before bed last night. Like all my trips to the library, I get a variety of books for whatever mood I might be in. I got a really good one, a bible for Lyme. It's called "Healing Lyme" by Stephen Harrod Buhner. Natural healing and prevention of Lyme and it's co-infections. I'm gonna want to buy this one!

Okay, I'm finally starting to feel warm. Thank you! Now, all I ask is for some energy and strength. Please! At least my neck and back pain aren't that bad today. I would have to give it a 5, maybe 6 on the 0-10 pain scale. But, I have an emergence of a symptom I haven't had in quite a while, vision problems. Double vision. It's dizzy-ing, hard to read, hard to type. I've been getting by with closing one eye, and rotating the eye I close. Uncomfortable, not fun, but I'm trying to cope anyway. Pressing on...

My senses are telling me that at this moment, I've got a major invasion of bacterias in certain areas of my brain. Sometimes, my speech is affected. My personality, memory, balance, sleep-wake cycle, concentration, focus, moods, etc., included. Such a complex myriad of overlapping symptoms. No wonder so many doctors are perplexed and overwhelmed!

I'm just hoping that, in a month and a half, maybe two, when I start my IV antibiotics back up I'll be stronger and healthier. Immune system invigorated. Ready to take on those stealthy spirochetes. Ready to get them out of their hiding places, kill them, and get them out of my body for good!

I've been learning more and more about attaining, and keeping a healthy immune system for life. Our world has just a slew of invaders out there, waiting to strike us when we're vulnerable. I never want to get that vulnerable again! So, I guess I have made my choice. Chosen to not fight nature, but instead to just what my body was built for, to just allow my body to keep a healthy balance of everything. To happily co-exist in nature. :)

A different kind of miserable- continued...

Since I've started the homeopathic treatment for lyme & stuff, it seems each day brings a different experience. A new, different sort of miserable. That sore throat has morphed into total flu-like symptoms. It totally reminds me of how I felt shortly after receiving one of my tick bites 4 years ago.

In addition to the fever, chills, pain, exhaustion, etc., I feel kind of just f'ed up. In a daze. Like I'm stoned out of my mind. Lol. But, really I'm not too amused. I tried to sleep as much as I could, but after I layed in bed for over an hour, still awake I decided to just get up. Then, after making some tea, I literally stared into space for over 2 hours. All the while thinking of things I might want to do or should do. Nothing. After attempting to read a book I've been working on ("Fractal Time" by Gregg Braden), some cross-word puzzles, solitaire... I then grabbed my iPod. Thankfully, I did find the perfect music to continue to zone out to (Deadmau5, which is some trance music) which has been awesome. Anyway, I got my computer out... After realizing that I really didn't feel like doing anything other than sulk and put my anti-social, morbid, crazy thoughts into words.

Anyway, I'm just kind of sulking. I feel like I black cloud. I don't want to talk to anyone, don't want to expose anyone. Plus, I haven't had many days I can remember where I actually had any conversational skills whatsoever. Totally unlike me. Totally. Well, the healthier me anyway. When I feel like this, I just don't care. Whatever...

Gosh, I need to shower... I feel more tired just thinking about all the work entailed into completing that (what should be, such a normal, everyday) task. Well, nothing is everyday or normal when you've had lyme for as long as I have had it. Maybe I should just try washing my face or brushing my teeth... Huh. Right now I don't think I care. It's not like I want my appearance to go to hell or anything. I just hope that I'll get a free pass or something, that beacause I've got so much I've had to deal with, that I'll be granted some mercy in that area. At least!

I'm pretty angry at my Creator. I hate this body, I hate this world, and I just hate this damn whole life! I can't think of anything I'd really want to do other than permenantly escape. Escape it all! The giant comet scenario talked about in that book seems so appealing. Maybe it seems more in reach compared to the other one. Who wouldn't want to live in a world that was simple, yet abundant? Without sickness or disease? Without poverty, slavery, or violence? F***!! Sign me up! But, like I said, that scenario just seems way out of reach.

So, I've been really focusing on my nutrition for a while now, not just supplements. This means a lot more work. More frequent shopping, plus preparation, cooking, cleaning up... A lot of work! There's no way I could so it without help. Even though I feel better putting nutritious foods into my body, that doesn't make it any easier for me or make me want to keep doing it. Every day, every meal, I have to push myself. I mean push myself, like, harder than I used to have to when I was training for a physical fitness goal. Even though, the raw veggies & the smoothies I've been making just taste better than opening a can, or re-heating a frozen meal. With my ever-changing taste buds, this could change. I certainly hope not.

Sometimes, it just makes me angry thinking about all the positive things I've been doing and how I see no reward. Like, shouldn't I be feeling so much better by now? I get thoughts, fantazations about my old 2-3 a day cigarette and 1-2 can mountain Dew habit. I just remember that when I did that stuff, I sure as hell felt better than I do now!

When I found out what was wrong with me, when I started learning about it, I had no problems making changes. I learned how bad habits like smoking, drinking (soda, coffee, or alcohol), poor nutrition, stress, and lack of sleep can have detrimental effects towards healing from lyme and other tick-borne diseases. So, am I missing something? I intuitively felt like my body needed a break from all the antibiotics, that's why I suggested to my dr's that I take a break. Maybe that isn't it. Huh?. Well, I still have my IV access in my arm, so soon I'll be back on my old regimen. Probably in another month. Maybe 2. Let's just hope that while I might feel sicker and sicker every day, I'll have the strength, energy, and willpower necessary to assist my body in resting and detoxing. So, hopefully I'll be able to tolerate the next phase of medicines until I'm healthy and I won't need them. That's my plan anyway. Or, one of my plans. The other one is if the lyme doesn't get me first, like my cardiac issues worsening to a point of my heart just stopping. As long as it's quick and relatively painless, I'm down with that!

I can't remember how many times I've seriously thought about speeding up the process by suicide. I've spent hours thinking of how I could do it, what would be the best way, etc. What makes me stop is thinking that maybe that would be such a selfish act, like the potential guilt and sadness my family might have. Also, what about my beloved Maddy? He might just end up dying with a broken heart, since we are so closely linked. I would never want to affect my family, the ones I love, with horrible emotions like that. That is why I could never go through with it. Why those thoughts just stay as thoughts.

Still, sometimes I just want to be selfish. I'm the one that has been living this hellish experience out. Only I know exactly how it feels. The pain that brings me tears, the un-ending exhaustion, feeling like my mind & personality have been hijacked, the depression, plus a list of other symptoms so long it would take me all night to type out. The symptoms I've been living with have gotten to the point in numbers and intensity that they literally have taken over my whole life. No matter what do, how hard I try, I just can't seem to push them out of my focus. Maybe that's why I can't seem to enjoy much of anything anymore. Like read a book, hold a decent conversation, etc.

I don't want to be a complainer, or only talk about the awful things going on with me. So, I just don't talk to many people. Stay at home. When I feel the worst, I try to internalize it, or be healthier by blogging. Sometimes, I just have to talk (or type) about whatever is going on. That does really seem to bring some relief. Okay, that's enough for now....

A different kind of miserable

Since my break from the antibiotics almost 3 weeks ago, I enjoyed a week or so feeling the best I've felt in many months (that's not saying much though)... then, I started my round of homeopathic remedies as a substitute during this break. The remedies are a mixture of the borrellia, babesia, and ehrlichia bacterias- in specific vials to be taken in a specific order and on specific days. The point is to energize my body's natural defenses toward the very invaders that have made my life a living hell for the last several years. The goal is to re-energize my tired immune system and re-direct it to fighting the right "invaders." During the last few months, I have developed sings of an auto-immune response. That is, my body has been putting all its energy into fighting the wrong things, like my own tissues, instead of fighting the infections.

It's been a week since I started the vials. They are a 2 month-long course. Supposedly, the "new kind of miserable" I've been feeling is to be expected. That doesn't make living through it any easier. Plus, there's really no way of knowing how long the miserable-ness will last. I just have to try to focus on the good things, like that obviously, they are doing something. Something is causing all these horrendous symptoms.

If I thought I was exhausted before, this exhaustion is worse. I feel like I have the flu. Fever, chills, sore throat, severe pain everywhere- worst in my spine, neck, and surrounding muscles. Plus, I just can't sleep. Even with the help of ambien and muscle relaxers. Yes, those things help, but it doesn't seem like there's much out there to really give me relief from these symptoms.

So, I'd like to find activities for me to do to get my mind off the pain, but the thing is that I'm so exhausted- too exhausted to really have the energy to do much of anything. Plus, my mind has been hijacked by my "Lyme Alter-Ego" again. That means that I have lost interest in everything. Everything. Things I normally enjoy and hold dear. It took me hours pushing myself, finding the willpower just to get on the computer and type this. I knew this was one activity that I could do today that could bring me some comfort. Some release.

My excruciating physical symptoms tend to manifest into emotional pain, making matters worse. Depression, even if it's just a short-term, situational version, it's still depression. So, I've been feeling a little hopeless. Like maybe I'm fighting a losing battle. Ready to give up. To surrender. I'm just so tired of all this. How much more can I take? I'm not seeing any light out of this hole of despair I'm in.

This is not like me. I've always been such a positive person. But, like I said earlier, my mind has been hijacked. The bacteria is like a cancer- devouring healthy, normal cells and replacing them with bad, malfunctioning cells. I can tell which parts of my body have been the worst-affected areas, based on the types of symptoms I have.

I'm so miserable that I've been having a really tough time not being angry. I want to just hate anyone that isn't feeling the same kind of pain that I've been in. Maybe it's more like resentment. I resent those people who are happy and healthy. Makes me sick. Not many people can really understand what I'm going through. And, it's hard for me to totally explain. Explain the gravity of it all.

Right now, I'm just wishing for comfort. An end. Relief. If that means death, that's totally okay. If that means a spontaneous return to health, that's okay too. I'm open for whatever means of relief. Lasting relief.

I'm feeling like living here on Earth, in this physical form, is just not what I expected. It's torture. Living hell. I think I'd much rather be in spirit form. The so-called "pleasures" of being in physical form don't even come close to cancelling out the hellish aspects. This just isn't for me. Unlike most people, I am not afraid to die. I'm actually looking forward to it!

So, on that note I think I'll close... Please pray for me and everyone else out there that is suffering. Grant us mercy, for God's sake!

untitled...

After staring into space today for a few hours, thoughts and fragments of thoughts swimming in and out of my head... I have many days like this... I made up my mind to try to do an update on here. It has been a long time. I've been pretty sick. Unfortunately, as I make progress in some areas and get back functioning in certain areas, I deteriorate in other ways. This is how having multiple co-infections along with the Lyme so complicates matters.

I rarely go on Facebook any more. Its been months since I feel like I have much in common with the rest of the world, even my family or good friends. If I am online, it's on sites like LymeConnect.com - the only place where I can relate to others lately. I just don't have the patience for the rest of the world's trivial problems any more.

Right now, in my personal hell... I am debating about the best things to do to try to make myself feel a little better. Earlier, I thought if I just could get out some of these feelings I've had, I would feel better. Well, now I've had the computer on this page for a few more hours and I haven't made much progress. More sitting and staring into space...

I haven't had any sense of time for 3-4 years now. The last year or two I measure time only in medication and supplement doses. Birthdays, holidays... they just don't mean much than being just another day. I am always surprised to see whatever date it is, to comprehend the gravity of exactly how long I have been in this state of suspension. Wow. That's all I can really say.

In the meantime, I'm trying to find the best music that sounds good to me right now. Even this has shown to be a difficult task. I hate this when I'm like this. I can't even enjoy things I usually would. One thing that I'm thankful for is my huge lifetime accumulation of music! My iPod is my best friend. Maybe I'll find the right music today to help get me out of this hell today. I desperately need to wash my hair. If only I could manage to get the strength and desire to accomplish that.

Ugly Reality

I haven't made any entries for quite a while... things have been difficult. Sometimes I know I have a lot to say, but I can't seem to sort out the mess in my head into understandable words and sentences.

Lately I just feel like I'm fighting a losing battle. Sometimes I wonder if I'll ever get better. This is wearing me down again. I don't know how much strength I have left. What my life has become is not much of a life. I can't do this much longer.

I must confess... secretly, I often wish that my heart (or liver, or whatever vital organ) would just go out suddenly and take me. Peacefully. I've been slowly dying, getting sicker and sicker anyway for the last 8 years. This slow pace has been absolutely excruciating. I can't do it.

I have always been a very positive person, and genuinely believed that I could get through anything. I've had many of these little slumps before over these last several years, but none that have lasted this long. I know just about everyone that has a chronic illness goes through some bouts of depression. Being sick like this is depressing.

I just want to be in a good mood for once in a long time. Is that too much to ask? How about if I could actually enjoy doing the things I supposedly love? I just don't feel like doing anything anymore. I don't want to really talk to anyone either. I just don't know what to say. This is extremely weird for me. Most people know me as the complete polar opposite. Maybe I just have to get over expectations. Ones that I have of myself and ones that I believe others have of me. How can I do that?

I just can't bring myself to accept, to fully accept my current situation as it is. Can't do it. Refuse to do it. I just feel like I could fulfill such a bigger purpose if I was healthy. If my body wasn't broken down by an evil, clever, resilient strain of bacteria that has the power and ability to literately drill into my body. Not just my bloodstream. My brain, spinal cord, bones, muscles, joints, heart, eyes, glands, bladder. These are just the parts that I know for sure about.

Living with constant pain and exhaustion is breaking me down. Then there's that long list of other hellish symptoms I suffer through as well.... It's just crazy. Unbelievably crazy. I just can't put up with it all anymore. I've reached my breaking point. I'm angry. I'm frustrated as hell. But ironically, I'm just way too tired to do anything about it.

Tomorrow's a new day. Hopefully, it will be better. All I can do for now is to envision a brighter and better existence for the future, as well as for now.

What happened?... I went backwards I think

In the last couple days, I feel like that progress I was making regressed. I feel like a different person again. Ugh! I wasn't anticipating this. I had been coping pretty well until just recently. Today, I woke up feeling like overnight I slipped into a deep depression. I can't do this with the mind-set I have currently. In fact, I simply cannot function at all.

My PICC line has been just driving me nuts! I couldn't sleep well last night since my skin around it was itching so bad. It still is. I'm afraid one night that I'll be itching it in my sleep and tear through the sterile dressing and compromise the line, or start to yank it out. God, I hope that does not happen. It's been 14 1/2 weeks now that I've had that line and the IV antibiotics. I better start getting a handle on this better because I've got a long, long way to go. Things will probably not get any easier either. At least, I know they are helping. I just wish this process could be a lot faster. It's hard for anyone not familiar with treating someone that has had Lyme for many years to really grasp the process. It's more intense and lengthy than the treatment for any other disease I can think of.

I'm also not liking the cold weather. I stay at my mom's house, and it's a lot chillier here than I prefer. I do not pay the utilities here, so I can't really complain. However, today I feel like I should be allowed to. Maybe I just need a moment to feel sorry for myself. A moment. Then I can maybe move on with a better attitude. I'm so glad this blog provides a safe place for me to talk about my feelings and I can just get whatever may be bothering me out, so I can spare my loved ones. I do not want to be any more than a burden on my family than I already have been. It's been hard on all of us.

I've been feeling very anti-social lately, too. It's been well over a week since I even did a Facebook post. I just haven't even known what to say. I feel like I can't relate to anyone and I don't how to even start. I don't feel like anyone can relate to me either. No one really understands, and most people are way too wrapped up in their own lives to care.

I'm starting to feel really overwhelmed thinking about our family's plans for Christmas and New Year's. I love my family so much and love when we all all together! We always have such a good time, no matter what we're doing. I just wish my situation was different. I just can't do all the things I used to do right now. I'm sort of restricted now. For instance, I get very tired easily. The most basic aspects of daily life exhaust me. Also, I go through phases where I have a difficult time talking. This is extremely frustrating for me since usually, I've always been such a out-going, talkative person. Also, it's just hard to travel with all the medicines and supplements I have to take, all at specific times throughout the day. I have diet restrictions too. For instance, I'm not supposed to have even a glass of wine. This will be hard for me during the holidays. I haven't been a big drinker or anything, but it's customary for us all to have a drink or two when we're together. It's like the only time I ever drink. I hate feeling deprived. I will just need to think about how much more sick it could make me, or how my liver just cannot handle it.

I sort of have a routine here and it stresses me out to have to change it right now. I have a set up in the bathtub so I can bathe, but I still need help washing my hair. It's still a lot of work. Because I can't get my right upper arm wet (where my PICC line is), and it is extremely difficult not to, even with the silly plastic gloves they give me- this creates quite an ordeal. So, figuring how to bathe while traveling and visiting relatives is my next problem. Like I said, even the most basic aspects of one's daily life are not so basic for me. Everything is so much harder.

Right now, I just want to stay in my comfy, cotton clothing. I do not want to dress up. I want to stay in my fleece and slippers. I do not feel like putting any make-up on or styling my hair. I don't want to have to look into a mirror either. No way do I want to be in any pictures! I would prefer not to have a permanent record for how awful I look, since I'll always remember how this feels.

My doctor recently informed me about why I MUST avoid gluten. Apparently, gluten is not only a neuro-toxin for Lyme patients, but also it interferes with certain neurotransmitters. So, if I want to feel emotionally well and not feel depressed or apathetic, I have to completely avoid gluten. Do you understand how difficult that is? Gluten is everywhere! It's not just in breads or cereals, it's hidden in many inconspicuous places, under tons of different ingredients. 

Sugar is really bad, too. That's a problem. I love sugar! It's also going to be everywhere! Deprivation. That's what I'm foreseeing right now. If I can get over that feeling, then I'll be able to see all the wonderful other things that I'll be able to enjoy. It's easy for the clouds of negativity to envelop the positivity, but once that positivity starts to break through, it takes over. Positivity is very contagious, thankfully.

Okay, I think I'm done for now. I feel a little better, I think.

Frustration

It's frustrating to have any sort of insomnia. Especially when the insomnia is related to Lyme disease, since the type of insomnia characterized consists of not only the inability to sleep when tired, but the inability to find a comfortable enough position to sleep in. When just having your pajamas and sheets touching your skin irritates the hell out of you, that's kind of a problem. I feel like I'm going mad sometimes since I feel like things are crawling under my skin. My nerves and nervous system has been going crazy! Going through the kinds of symptoms that I have endured will most definitely push anyone to their limits! I guess it's a good thing that my symptoms are always coming and going. At least I get breaks from some of the worst ones.

Lately, I've been having such a hard time focusing, concentrating on anything. Even on things I really enjoy. This is extremely disconcerting for me. When you can't seem to do anything, favorite things included, what do you have in life? Just more time to realize the unfortunate situation I'm in, that's all. Mind over matter, it's a daily struggle.

I'm just trying to finish this book I borrowed. I love it! I've really enjoyed it, but it's just taking me forever to finish it. I've just had a very difficult time reading during the last 2-3 weeks. The way my symptoms cycle, I should start to regain my reading ability very soon. Reading is one of my passions. I used to mainly prefer non-fiction, but during this last year I've discovered how great it is to get lost in a great story. Fiction has proved to be a better distraction for me during this point of my life. Since my ability to learn new information has been severely affected, I get extremely discouraged when I can't remember information I used to know. Humbling.

Why do I always have to be so tired? A lot of the time, I'm just to weak or weary to do anything I want to do. Even holding a book can be challenging. Holding my head up. Typing. Anything. You name it, a lot of the time I just can't get the strength to do it. Sometimes I just wish I could fall asleep till I was well again. Or just fall asleep and never wake up in this body again. I feel a lot that this body of mine has failed me miserably. I feel cheated. Cheated out of living. I've been merely existing for quite a while now and I'm sick of it! Maybe this is why I'm still fighting. I suppose, I could have given up long ago. But I haven't. I don't know why sometime, to be completely honest. There's got to be something so fabulous coming in my future that I've made sure I'd be there for it. That's possible, I guess. I can hope at least.

One of the most frustrating things to deal with is being unable to sleep when you are clearly exhausted. And, I know I need to sleep so my body can recover! Ugh! A while ago, I had the opposite problem. For almost 2 years, I couldn't stop sleeping! I just couldn't stay awake! What a contradiction. Hopefully someday I'll find a compromise that I can live with. Can you believe that I used to sleep straight through a whole weekend? (minus bathroom trips, glasses of water) Crazy. My record is 37 1/2 hours. WTF. Worse yet, at that time I had no definitive diagnosis to fully account for what was wrong with me. It was excruciating. Deplorable. At least now I have a sound explanation for all my bizarre behaviors, despite how daunting.

Most nights nowadays, I just can't seem to get 'comfortable.' Translation: burning sensations throughout my skin/body, musco/skeletal pain, itchy skin (with 'creepy-crawly' sensations all over), muscle twitching, peripheral neuropathy, etc. It is literally hell. HELL! At least eventually, I do fall asleep. I went through a month or two where nothing seemed to be able to knock me out. I hope I NEVER EVER have to go through that again! I took 10 Benadryl one night. Slept 30 min. Then my dr gave me the highest dose they make of Ambien. The most I could sleep then was only 4 hours. WTF.

I can't stress how good it feels to finally be in a position where it really feels like the worst is over! Looking back, it's hard to fully grasp what a journey this has been so far. I do not ponder what the future may bring. I just can't look that far ahead at this time. Too much. Honestly, I really don't care right now. All I do care about right now is living in the moment. Living authentically. Being truly present. I learned my lesson earlier in my life when I tried to plan out and control my future... there's a quote that says, "God laughs when men make plans." 

That's another thing. Spirituality has been crucial for me. Basically, remembering that I am an eternal, spiritual being, here on Earth having a human experience, not just a human on Earth having a spiritual experience. What a breakthrough! When we understand that we are not our bodies, that they are just our 'vehicles' for existing here on Earth, a remarkable dimension is added to our lives. A series of compounding effects takes place. Anyway, for me the realization that I have total control of how I experience things has had a profound impact. I see the correlation between negative energies, thoughts, emotions, and setbacks, strife. I decided that I needed to take control of my miserable situation and change the way I saw it, therefore allowing me to become aware of the gifts this situation could bring. I began to realize all the priceless things I had gained, not at how miserable I was over all that was lost. Thinking this way takes some practice at first, but it is definitely possible to switch over negative thinking. Love and positivity is way too infecting :)