I'm sitting in my room in my parents' home for the last day; tomorrow I drive back to my own home in PA, my father along for the rather long drive. I have yet to pack at all, though we're doing it fairly simply and not worrying too much as long as nothing like a medication gets left behind.

I should be sleeping now, as insomnia--a symptom of my bartonella--has been hitting me hard for the past few months, and yet I'm curled up on my beautiful teal mini-sofa (mini, and yet too large to get up the stairs to my DEFINITELY mini-apartment, more's the shame) and looking at wooden boxes and plastic containers. I have been digging specific items out of them, but I cannot bring myself to really go through the entirety of their contents as I should.

They contain my many art supplies, of all types, you see. I still due various types of jewelery work, and I work with yarn and fiber in as many ways as I can think of--but I can no longer draw no paint. My hands shake too badly, and my fingers are far too stiff from arthritis while simultaneously inflamed from the toxins of the disease.

I am getting better, and I know it. I will be cured before another decade is up, and I know that too. In many, many ways, I am lucky.

But there have been costs every step of the way. Huge financial costs, of course, but those aren't the ones that hurt, and I think we all know that. I've paid more than my dues in many areas since I was infected with Lyme and the two co-infections, bartonella and babesia. And I try to not complain too often about it, because no one wants to be around a whiner, for one, and for another...it just doesn't do any good.

But right now I'm curled up in my chair, staring at my art supplies and my cat who is lolling on her back near them.

And I would give almost anything, in this moment, just to be able to draw her like I know I could have a decade ago.

Okay, so, fibercrack, in reblogging the post about the fundraiser my friends are running to help me--and I thank each of you who has donated and each of you has reblogged or linked to the post in question, I truly do--said, in talking about me, "[...] and she has had a rough run of it for just about always."



And I try to be positive--I think of myself as a cautiously optimistic realist--about my life and I know that there are people out there who are far worse off than I am.



But I hate flying, I hate it with the passion of a thousand stars going supernova all in the same instant, and that's because I've had horrible experiences when doing so.



The one that stands out in mind took place two weeks before Christmas, 2005. My parents let me go overseas--for the first time at all, and on my own, though I was 19--to spend Christmas with my friend who had been an exchange student at my college the previous year.



First the plane was delayed for four hours. Well, it sucked, but you meet people, there was a restaurant and bar, you talk--could've been worse.



Finally, we get on the plane. And a guy starts smoking. The steward told him he had to put it out or get off the plane. The smoking man, that is, had to stop smoking or get off the plane. Not the steward.



Smoking Man, we then all found out--as he was quite loud--was actually Smoking-and-Drunk Man. And he informed the steward he wasn't getting off the plane. Nor would he cease to smoke.



At this point, two additional attendents have arrived to help force Smoking-and-Drunk Man--or S-and-D Man, from now on--off the plane.



That would be when S-and-D Man announced he had bombs on the plane that he would blow up if they didn't let him smoke.



No one thought he actually did, but you follow procedure anyway. The FBI showed up. Bomb sniffing dogs arrived.



And that's when we found out that S-and-D Man was actually S-and-D Terrorist, as there were, in fact, bombs on the airplane.



So S-and-D Terrorist is taken away in shackles on his hands and feet both, but all of us have to be rebooked. I won't go into the chaos that followed, because there was a bombs--or there were bombs, I was never clear on how many--on my bloody airplane!



My cat is a therapy animal, which means as long as I bring a letter from a psychiatrist saying I need her, she flies for free with me, and my anxiety stays under control. Panic attacks that involve me sobbing and shaking are thus averted, because I hate taking anxiety medicine, I don't like how I feel on it, so I have Ember, my lovely therapy cat, instead.



But I can't take her with me to the hotel today, so, while I do have my father and another person helps, I have to take some of the Absolute Emergency Only xanax before I get on the plane.



It gets better, because we're going to see my Lyme specialist, which is a long--normally 2-4 hours--stressful appointment, which can be filled with good or very, very bad news.



So. I'm not loving today. In fact, I'm hating it. I'm putting off showering, dressing, and packing until 11:30, when we leave at 1 PM. I know that's enough time, but I just. I hate doing this, and I have to every three months. Which, believe me, is not as much time as you think it is. it passes in the wink of am eye.



Just. Shit. That's it. Shit.



I need a vacation from my life. Or a vacation, period. I may be going to Florida, but that's because that's where the specialist IS. It has nothing to do with a vacation, and I'll be too tired from the appointment and having massive amounts of blood drawn from me at once to do anything. It's possible we might go see a movie. But I doubt it.



Just...think good thoughts my way? Please? And also, thank you, again, people who donated and who linked to and/or reblogged about the fundraiser. I've been able to pay off the only debt I had, so I don't have to worry about interest there, which is awesome. And money for IUD and surgery is slowly but surely building. So, thank you.



There. A positive note to end this on. Rather than an hysterical one. In the "fits of hysteria" way, not the "incredibly humorous" way. Cautiously optimistic realist. I will not panic. The flight will be fine, the appointment needs to be done, and the news will probably not be bad, as we know I'm getting better, no matter how shitty I still feel 2/3-3/4 of the time. Optimism! And no panic attacks. That's the plan for the day.

I got my most recent blood work back.

A fair amount was quite good, really.

My liver continues to slowly--fail? Not work as well? They mean the same thing, but the first sounds melodramatic, and the second sounds...like someone's work evaluation, I guess. And the thing is, it's not doing HORRIBLY or anything, it's just...I know it's not doing well, either, and getting worse, even if very slowly. It's hard to figure out how to feel, to be honest, at all.

So. Not feeling in the best mood.

My last two work checks haven't come, so I'm owed over $100. And I owe about $300, ONCE I PAY THAT $100 towards debt.

Oh, and I'm on extension, but I still feel shitty, so I'll probably need to pay another $75 for a second month.

Good news: bought the stuff for the Flat Belly Diet, which I really am promoting, as last time I did it I lost unhealthy weight in areas I needed to, had more energy, strength, and endurance, and less stress. Actually, I promote getting both that and the Flat Belly Diet! Pocket Guide, as it has things like check-off shopping lists for each week, and options of what you can eat at restaurants and alternative food brands. The other book, meanwhile, has a lot more info, exercises, journal entries, and I think more recipes.

There is a cookbook, but honestly, don't bother buying it. Go to Prevention.com (who publish the books) and there are hundreds (I admit, that's a guesstimate on my part) of recipes for free for all four meals you have each day (breakfast, lunch, a snack that's normally a smoothie, and dinner).

As for the exercises in the main Flat Belly Diet book, they are designed to be things you can fit into your schedule, whatever it is; the author is a mother of three young children, and when consulting various experts for different parts, she wanted that to be one condition of the exercises. The other: no crunches. At all. They're proven to not be that effective anyway.

It's also designed to be cheap. If you have a Wii to use, great! If you want to just use the various exercises (including walking and running; walking is important and emphasized, so you do it each day, but if you can't go out for some reason, you can use something with the Wii or an exercise bike, or similar indoor exercise machine) in the book, then all you need to buy are:
- 2 sets of dumbbells (one heavier, one lighter, to work your way up)
- an exercise mat
- the book
- reflective shirt for when you're walking, depending on what times you are and where

If you WANT to, you can get the following things:
- An arm/leg band to hold your ID and keys, along with a ten or something
- Your cell phone, and a way to clip it to you, if you can't keep it in your purse comfortably
- If you want to, a way to attach your MP3 to yourself, and earbuds that stay on or an MP3 player with build in speakers
- Pedometer

More exercises of other types, along with playlists, and all kinds of related health info is on Prevention.com, to boot.

I'm linking to the two books on Amazon, as I did above, too, but you can get them for as well on Abebooks.com, though not necessarily for less. I see several for a buck on both sites. You just have to look. And not mind used if in good shape, from BOTH sites. But really? One isn't better--or cheaper--than the other, so check both. (And yes, I link with my affiliate account. It costs you no more than buying it without the affiliate code in there, I promise, whether you buy new or used, it helps me out, and there's Abebooks.com if it's cheaper.)

When I link to them on Amazon below, I'm also linking to the other existing ones, like the one for men, or diabetics.

I KNOW this helped me; I just need to get back to it. I may post excerpts or brief scans here or there from it, because it really is easy. (Why did I stop? My feet hurt so badly I couldn't stand to cook. Yep. That was it.)

Anyway. Here are the books, but a last note: I recommend getting the Pocket Guide with whatever main book you get as well. And, while I'm including a link to the journal, a journal is in the main book (at least the one without "for men" or "for diabetes" in the title.). Photocopy and/or a computer program can be your money-saving friend.

The Books

- The Flat Belly Diet: Hardcover | The Flat Belly Diet:: Softcover
- Flat Belly Diet! Pocket Guide: Introducing the EASIEST, BUDGET-MAXIMIZING Eating Plan Yet
- Flat Belly Diet! for Men: Hardcover | Flat Belly Diet! for Men: Softcover
- Flat Belly Diet! Diabetes: Hardcover


The Cook Books and Journal, If You Really Want Them

- Flat Belly Diet! Journal: Write Your Way to a Flatter Belly
- Flat Belly Diet! Family Cookbook
- Flat Belly Diet! Cookbook

Love doesn't sit there like a stone, it has to be made, like bread: remade all the time, made new. | Og Mandino (1923 - 1996)

The holidays are nearly here, though it doesn't feel that way. And so I have holiday icons, four different ones. I love the one of the pink ornaments on the white tree the best, I think; it makes me think of eating pure snow that tastes the way you think it should when you're a toddler, and what Candyland might really be like if you stepped into it, ornaments really fruits that taste like nothing imaginable and everything desirable.

I have so much work it makes me almost ill; the problem is, of course,that I am ill with it. My head throbs and my chest still hurts rather badly. I need to take a muscle relaxant for pain, but that means taking a pill to stay awake, and it feels like all my day is filled with tablets and capsules and liquids and ointments and shots, each one to balance out or protect against another, and then those few that kill the diseases themselves.

It's December, and even though it's been rather warm here in Tennessee, it's cool outside; I feel like it's the middle of July, and my stomach rebels against the mixtures in it.

---

I pray, each day. For people who I doubt would ever think I do. I was a minute ago. I pray for their peace, for their health, for their grace; for fortune in their lives, for health, for needs to be met, for them to know forgiveness is granted and for them to forgive in return, and for ever and always love.

---

I am so tired. I kept up the wall against reality and fear and thinking about some things I know I'll be stuck with all my life for so long, and I didn't even realize how much work it was. But I half-wish it was still up.

I never said I was brave. I never said I was strong. I never said I could always be okay with this and deal with it at all, and especially never said I could do it alone.

I feel very alone, most the time. Not always. But most the time. Alone and lonely, unimportant and fading into the background and given little thought by most. (I feel; logic has no place, sometimes, except to make me feel guilty, too, every now and then, about feeling so.)

And the worst part is being afraid to ask for the support or help you need, even if it's just to talk about it--because what if listening is too much?

And then I'll be even more alone than I am now.

---

I have schoolwork to do; I have 7 days and I really need to do a week's worth each day. For my brain, this is easy. For my body--

I am so frustrated with my body. With my body, with life, with the stubborn natures of others and with wondering about my own. I am so frustrated with wishing that someone would stand up for me, or hold my hand. I am so frustrated with having to be understanding on top of the rest.

And I have to. Because I can't be me and be otherwise.

But it wears, too, and I feel so tired that I wonder, with all the mess and all the wear and tear, why I bother trying to do so much and why it's so important to me to do this or that.

(And the answer is, because I'm me. And I made up my mind to do this long ago. To love and to forgive, to understand and to stand up for others unconditionally, not to be angry if it doesn't happen when I need someone to do it for me, to protect others from embarrassment even if it would be easier on me to reveal their actions, to be truthful and kind both, and to never give up. And I have to keep doing it, imperfectly though I may, to keep trying to be the me I'm meant and need to be.)

---

Nerves in my lower back have degenerated rather a lot from--oh, from one of them. Lyme, bartonella, babesia, what does it matter which? One did it. There's only so much healing--"repair work"--that can be done, and it can only be started when I'm totally well. And until then, they degenerate more.

Sitting hurts. Standing hurts more. I worry I'll end up in a wheelchair again; I was for a while in high school.

---

The essence of Christianity is something I love with all my heart.

But Christianity as a religion involves communion with the other as well as communion with God. And too many times I've been hurt too badly by Christians who were not at all Christ-like, with hardened hearts and unwillingness to forgive, even if they were in turn. And that's the most critical part, to forgive, to work and rebuild, to accept the penitent and the prodigal home again.

If you're turned away enough--by individuals or organizations, by a bishop, a teacher, a parishioner, a fellow worshiper, a pastor, or even a friend (Brothers and Sisters in Christ, are we not?), no matter if it's a member of your denomination or another--then you stop trying to come in.

Maybe that's what it is most, for me. I've always said I would never give up, but maybe I'm at that point anyway. Or too tired to try. Maybe for now, or maybe for always.

I don't know.

But I can't not think about it. And it hurts as badly as anything physical could.

---

I have work to do. I'll do my best to get it done, even if it kills me. If not, I'll retake the course--again.

I wish the schoolwork was all I had to deal with. That would be so simple.

---

I want to live, not just exist.

I want to love, and for it to be known.

I want to dance, and for it not to hurt.

I want to forgive, and I want to be forgiven.

I want to go home, and I want to be welcomed back.

---

I miss something.

I don't even known what anymore.

---

I'm not depressed--or, rather, I am a bit, but that's not the motivating...force, emotion, choose the term you like best, within me at the moment. And by "the moment" I mean "since that appointment".

It's--it's a lot of things, I guess. It's love, and fear, and a constant sense of time, and pain--and more, the utter absence of pleasure--and determination, and a need to keep going when I feel like I'm on empty. And feeling like I've been drenched in reality and awareness, of knowing exactly what each thing about my body and health and medications means.

And I continue to believe I will get entirely better, that I will be cured and okay and have a life, a good one, and I live like this will be so.

But all the rest is in my head now, too. Almost all the time.

And that, too, wears me down.

Meant to post this here and crosspost to LJ, but. I didn't.

So I'll put it here now.

---

It's one of my favorite verses from the Bible. Especially because God's voice can come from anywhere--and anyone. So you have to be open to softening your heart and opening it to anyone and everyone, to forgiving them, to welcoming them in or back in.

That is the essence of Christianity. To refuse to harden your heart and to accept the forgiveness of others and give your own, while you welcome those you've been hurt by or angered by or even damaged by.

To do otherwise is to deny the faith. It is not easy, any more than loving others as God loves you is easy. It is still necessary.

If today you hear His voice--no matter from what source--harden not your heart.

---

So. Specialist appointment.

I don't think I've had a doctor appoitment that's left me so emotionally shaken. I've played Live Like You Were Dying more times than I want to admit.

So, here we go.

1) The doctor does believe I am getting better.

2) Until I am 100% cured of everything, my risk of dying remains just as high, though, especially from a heart attack (which I'm at extremely high risk for) or a brain anneurysm.

3) He is seeing more and more people dye of Lyme and/or bartonella all the time.

4) We have had to stop my bartonella treatment for now.

5) Not only the disease strains my body, but the many medications do as well. Especially my heart and liver. I've done remarkably well, given the doses I'm on and how many medications I'm on that do harm, long-term--and it's been a very long-term--but the fact remains that my liver and heart are...issues.

6) My stomach is also. I throw up about twice a week, and I'm no longer digesting food well; I sometimes throw up food I ate two days ago.

7) I'm on stimulants and muscle relaxants and pain killers and cyst busters and antibiotics and other kids of antibiotics and anti-inflammatories and and anti-parasitic drugs and supplements and vitamins and I can't even remember right now what else. All of them have side effects.

---

So for some reason, and don't ask me why, it hit me harder emotionally than it ever has before. I think I've been in denial, or emotionally withdrawn.

THe odds of my dying are probably better than my living.

I'm not afraid to die. I'm honestly not.

I'm afraid to die, though, with regrets. With leaving things undone and unfinished and unresolved, with not dealing with the things that plague or haunt me, without trying as many times, or at least one last time, to fix things, especially things that are messed up for the most human and thus most foolish of reasons.

I don't mind dying, but I want to live in the meantime. I want to jump out of a plane. There's a cliff nearby that I plan to jump off of before I move in the spring; I'll get a ticket for jumping off of it into the river, but what do I care? I wanted to before and stopped myself; I won't now.

I want to do all the things that scare me.

I've forgiven everyone who's harmed me, ever. I've forgiven everyone I fought with. But I need to talk to them and try to restore a relationship, in many cases, especially in the cases where it's stupid. Validly painful, but for human reasons that were foolish on both sides. I need to try and heal that.

I need to do everything so I have not a hardened heart and so I have peace.

Then, whatever happens--and I'm going to continue to believe I'm going to get better, mind you--it'll be okay. I'll have done my best and all I can.

But I've got to do it. All of it, even if I have to ask some people for help for some of the things. I'd rather not, but in a few cases, I know I have to.

Because if I should be wrong and things don't work out--I've cried a lot the last few days. I don't want to cry anymore. I want to make things better. I need to do all of this.

Because then it's okay, no matter what, and I don't need to worry. And I can keep living and believing I'll get better and enjoy everything to the fullest--but I have to do this. Or it will all get in the way. I hate that I have to ask for help for some, but I do; I hate that the odds are against me, but I hate odds.

I hate that I have to admit I'm scared, but it's not of dying; it's of not finishing or doing the things that need doing for it to be okay, no matter what.

---

And that's that.

ETA: There are people who don't watch this blog (either here or on LJ) that I would really like to know about all of this. If you could maybe link to this post with a summary of health stuff et al and what I am doing...it would mean a lot. One of thoe things I have to ask help for, I guess.