Raw Spewage

Updates from the battlefield ... fighting and winning against Lyme disease. Lyme bacteria rarely travels alone, by the way... so not only am I infected with Lyme bacteria but it brought along friends Babesia and Bartonella. It's one big keg party in here. But guess what? The party is OVER, boys. I am hammering you with IV meds and you are making me so ill as you fight back... yeah, you SUCK. But my meds are bigger and better and kicking your little bug asses to the curb. I win. =)

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Location: Palo Alto, California, United States

Writing has always been the best way for me to communicate my thoughts. And since my thoughts spew forth as raw, scattered, and random musings... the term "Raw Spewage" seemed quite appropriate.

Tuesday, March 31, 2009

Ugh. And more ugh. And The Cat smells.

Here's the long and short of it: ever since last Thursday's doctor appt, I have been flattened. I started to come out of it a bit on Sunday but a whole bunch of other unpleasant symptoms reared their ugly heads that day so... yeah.
It sucks.
And by flattened, I mean that I have to lay down every few hours and sleep. TV, reading, computer -- all of those things are just too much for my brain and PFFT I am done. The sleep is a deep, dreamless exhaustion.
So how did I get into this state?
A foot bath. Yes, you read that right. A FOOT bath.
I still don't have much energy but I will try to explain this because it is really important to understanding how even seemingly benign things can be devastating to a Lyme person...
My system has a hard time ridding itself of toxins and waste... and considering the huge load of bacteria and virus I am carrying around, this is essential to make sure we deal with. My doctor has an ionized foot bath that he uses with salt and the salt draws out toxins and helps to balance the pH in your system. I have been getting one of these a week on the lowest setting and I am tolerating them well now. My past appt, however, one of the Helpers did not ask the doctor to be sure what setting to use... and instead put it on Mode 2.
Not good. Not good at all. All my bells were ringing as warning but I thought they had checked so... anyway. About 15 minutes into it my feet were burning so badly that it felt lke they were on fire. Cold water did not help. 20 minutes into it, I started crying and said "I am done" and pulled my feet out.
I think I wrote something about being trashed in a previous blog... well this is why that happened.
Today is Tuesday and I still have not been able to right myself after that. It can take me a week sometimes to get stabilized. And all I can do is allow my body to heal -- the bath in and of itself is not a bad thing -- it is actually a GOOD thing. Getting rid of toxins? Crucial.
But like everything else in my life right now, it has to be done slowly or else my system crashes.
I do not remember much of the days since last Thursday. This weekend passed in a blur because I slept so much. The Child had Spring Break last week but she was with her Dad so she didn't see the ugliness...
And to add insult to injury, some of my symptoms got WORSE. From the hips down both of my legs now feels as if I have my legs in cold water. Ew. Not to mention also feeling like I am wearing a pair of hairy pants -- and no, that is not because my legs are hairy... it is this weird sensation thing. Kind of like having my legs encased in static, I guess. It's nasty.
I also have this weird sensation that I call the "Barbie Leg". When I played with Barbies, I always had one whose leg would pop out and just flop around. Well, my leg isn't "popped out" but it FEELS floppy and well, like that stupid Barbie leg. I can still walk and sit... it's just a horrible sensation.
And EVERYTHING is too much right now. Vision? Yeah, sun is too bright, lights are too bright, TV too bright, etc etc. My senses are way fried. Even my hearing is extra sensitive -- it hurts to talk on phone. To watch TV. To hear music that is too loud. Etc.
Okay. Am about fried again. The Child is here and last night when I helped her with math? Oh yeah that depleted the last minute granules of brain I had left.
And to make matters worse, The Man has these huge important meetings right now that he cannot miss so I HAVE to deal with dinner and homework and life.
Sigh. I think Lyme can really defeat you if you let it. It takes all my guts and strength to force myself to dig down and grab what I need to do the stuff that must be done. It's not easy. Not at all... but it's what I have to do. But... I have great doctors. Gratitude for that ... such gratitude. I see one of my doctors every week. He has called me just about every day to check on me since the horrible foot bath mess. He has been such a source of comfort... letting me know that yes, this will pass. Yes, he has other people who are in much worse shape than me. Yes, things will balance out.
Such comfort.
Anyway, I can't muster anything funny right now... well, other than the fact that The Cat's butt is quite stinky and vile right now.
Seriously. VILE.
And he weighs 20 pounds so the chances of me wrangling him into a bath are NONE. I posted the question to one of my friends on Facebook and his response was a riot... he said to "Put him outside for a day and hope he fixes the problem himself? Cats have a strong sense of shame. Act disgusted and disappointed. He'll probably pick up on it. Given a day outside to reflect, he may see the errors in his ways and correct them. "
I laughed so hard at that.
People are funny.

Thursday, March 26, 2009

Utterly Trashed

Being "trashed" in college meant drunk and unable to function. It's actually quite an appropriate term for how it feels when my brain and body just are DONE.

Game over.

This state of being is a Lyme thing. It is a bad place to be because it means that you've shot your wad of energy and your brain is so fatigued that your symptoms get flared.

Or worse, some other horrible symptom rears its ugly head.

My goal each day is to prevent this trashing from happening... unfortunately, there are days, like today, when it is unavoidable. It's around 8pm and I just dragged myself downstairs from where I was sleeping since 3pm.

And I do mean dragged. I am still exhausted and still feeling horrible.

But at least I can still see. Oh yeah, my vision has gone before. Which used to be terrifying but now? It's just one of those things.

So. I'll be quick since I have nothing left here -- let me describe how this feels.

The reason I am in this state is because I had a doctor appt which means being driven in the car. Driving or riding in the car is not an enjoyable thing because of the amount of information that bombards my senses... the cars flying past, the bright lights, the horns, the cars, the people flashing past, the speed of the car, the sensation of movement, the sun. It is especially bad to see things in my peripheral vision... that flashing movement is a Bad Thing.

Okay, so we're already in trouble BEFORE the appt.

And the appts are not the usual appts. No. My doctor is an expert in Lyme and the complex connections between the brain and the body. He can test me and pinpoint exactly where my brain is not functioning. he doesn't do this every time but today he needed to see exactly where things are right now... which areas are weak.

Uh oh. Sigh. I'm done.

So tired i cant think anymore. s o frustarting havingthis happen.

Wednesday, March 25, 2009

97 Pound Duck

Yup. That's where I am right now. But I am working my way up and trying to get plumpin'...

I started the powdered supplement yesterday. My doctor ordered me a medical supplement from Metametrix called UltraClear. It isn't completely gross just tastes blah and bland.

Let me check my weight and see if I gained anything yet...

Uh no. Still 97 pounds which sucks. Not to mention how I still look like that ridiculous spindly Olive Oyl from Popeye. I always hated her. Bunch of clattering, spindly limbs flailing around.

Wading through the high water as more pours in

At times, I am afraid to go to sleep. Sound weird? Well, it is just terrifying to wake up with some new symptom that wasn't there when you went to sleep. You think, well if I stay up, I can be the guard and keep something new from sneaking up on me.

Ridiculous, I know.

I don't ACTUALLY stay up all night but... I still find it hard to go to sleep. I've been trying to change that because, hello? Sleep is the best thing for me -- not to mention a perfect way to pass the time and NOT be surrounded and aware this mess. And "this mess" is exactly like being in a room where you have to get to the door on the other side and the water is pouring in.... you have to not only wade through the deep water around your legs but push against the force of it flooding in while making sure you keep your eyes on your goal - THE DOOR.

Oh and you have to also not lose your shit in the process. You have to find a place of balance and allow yourself to KNOW - without a doubt - that you will make it through to that door. It doesn't help to lie, by the way -- you know, saying stuff to yourself like "The water is not here and it is NOT cold... or deep... yadda yadda".

It doesn't help at all.

Why? I have a theory... newly formed. When you lie, it is just making yet another obstacle for yourself. I mean, your brain knows there is water and it is deep and it SUCKS. Why not just call it what it is? It doesn't make it any worse -- in fact, I've found that it helps when you say "Yup. This SUCKS and I HATE this damn water and how cold my legs are and how hard it is to move through this crap."

It is what it is. Ackowledging it doesn't make it worse. It actually allows you to just be in it without fighting it and THAT, my friend, is one thing that I am discovering is hugely important.

Extremely difficult, this surrendering thing. It has always felt like surrender means giving up.
Nothing can be further from the truth. Surrender is just allowing the situation to be what it is. Yeah it SUCKS to be here but here is where I am so how can I make this even the teensiest bit less SUCKING? I've found that humor is quite effective. It distracts you and also makes you laugh... exactly what you need when facing really shitty stuff.

Don't get me wrong -- sometimes it takes all of my strength NOT to just let myself give into despair and frustration... I mean, ENOUGH already. I want my life back. NOW please. But I do not have control over that... all I have control over is how I handle things. That's it.

I know I said I'd give a list of all my symptoms but I went on a tangent and ran out of energy. Maybe later. Although, that said, you have a pretty good idea how limited my energy is... VERY limited and it goes quickly.

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Saturday, March 21, 2009

Lyme: Why should I listen to you?

So... it occurred to me that there is no reason why anyone should even bother to read this blog. They do not know anything about me -- why should they listen? I could be some crackpot who is being dramatic... who has never had a day of pain in her life.
You see, that is exactly why I will give you the reasons why I even took the time to write this at all -- I am someone who can describe some of the most painful stuff to deal with like:
  • Kidney stones. I can describe them in detail... that is because I have passed 2 of them. The pain of that is as bad as childbirth -- worse in some ways because at the end, you do not get a baby, just a piece of jagged coral for your work.
  • I had a baby and the very next day had surgery to get my gallbladder out because I had stones while I was pregnant. That was miserable.
  • I have had Endometriosis since I was in high school and have had 12 surgeries to get that crap cut out.
My doctors told me that what I do every day to get up and make it through is "nothing short of heroic". My endo doctor told me he has the highest respect and admiration for how I have dealt with this mess. My best friend from high school undertook some of the most challenging training out there when he was an Airborne Ranger and later when he joined the FBI. He said that thinking of me got him through it... seeing how I dealt with pain and gritted my teeth and made it through is something he never forgets and it helps him to do the tough stuff.

So how is Lyme compared to all that?
It is worse. Because there is no finite end point and, more terrifying, the medication does NOT make your feel better. In every other health crisis, medication was my friend... it helped the pain, it helped the symptoms. In every other health crisis, there was a clear point that I could hold onto and know that once i got THERE, things would be better... like after I peed out the stone or after the surgery was over and I healed or after the baby came out.
Lyme is not even close to being that way. Not even close.

Lyme bacteria and its "friends" (the associated bacteria and viruses it brings along to the party) are alive. Things that are alive have an intense desire to stay alive and so they fight back when they are attacked. This is just their nature -- they are just doing what bacteria does. It's not personal. But make no mistake: it S U C K S. Why? Because they pull out all the stops to get you to lay off and stop the medication. Your symptoms get worse. Your body gets so fatigued that you cannot get off the couch and feed yourself. And since every person is different, there is no set timeframe for how long it will take to "get to the other side".

Well how bad can the symptoms be? I mean... how BAD can it possibly be?
Worse than anything else I have ever been through. And now you understand that is saying something. I cannot do it in this post but I will post it next -- a detailed list of what symptoms I have experienced. Things come and go and switch sides and get worse and ease up... but I will put them all down. I think I have put up bits and pieces of what I am going through but I will be complete about it in this list. I do not like thinking about it. I live it every day so writing it down is not a good place for me to be... but maybe, just maybe it will give comfort to someone else in this mess. I think if even one person finds this and reads it and goes away knowing that there is someone else out there who is dealing with this too ... well if that gives even the smallest bit of comfort ... then it was worth the time to write it.

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Sunday, March 08, 2009

Bar Fight Rages On... but is that some SUN I see?

It has been sunny the past two days and I sat in the sun.
It was wonderful.

The bar fight rages on. My doctor had me stop the medication to let my system regroup... to be honest, I cannot tell much of difference. I mean, there are some small things that are better like having a bit more energy... and actually *feeling* hungry which I have had trouble with. My weight is still way too low but am doing the best I can. My vision is still good -- not dimming like it was, no dark patches, no blasts of light when I look to the left... so that is very good. I still have horrible cold spots on my left side with patches of numbness but there are also times when my feet are actually *warm*... so warm, in fact, that they feel hot and swollen. I asked Doc about that and he said that is the brain perception thing.
It is SO helpful to have people who understand and know this shit. Seriously. If I was at a regular Neurologist? I'd be on medication for MS which would be a HUGE problem since those meds do not work well for Lyme people.

Doc told me that I need to think of what I am going through as chemo because that is exactly what it is... we are killing off bad stuff in my body and the fallout from it is awful. I have lost huge amounts of weight... not to mention hair... my apetite is shit... etc etc. Anyway, I had a great conversation with a guy who went through chemo and he had the best suggestions. It was a relief to just be on the same page with someone... I mean, he is cured now but his prognosis was not good at one time -- at least my prognosis is excellent. I CAN be cured -- but getting there is hell on wheels. He said my situation is worse in some ways than his was because at least he was knew generally what to expect ... how long things might last or what might happen. Not so with Lyme. Here's what he said that helps:
  • Get the big DVD sets of the TV series. The short episodes of 1 hr are much easier to make it through and give you something to look forward to. We have been doing this and it really does help -- I can make it through an hour but not much more. We love Chuck... plus I also started the Shogun movie from the 80s. Not to mention American Idol is back...
  • Sleep. It passes the time and helps you heal. Yeah, don't have much choice in that since I am exhausted all the time. And sometimes I am so damn sore that it just hurts too much to sleep but once I get the pain under control, that helps.
  • Take your pain medication. Yeesh, the pain gets very bad sometimes from how much my bones hurt and ache inside. The migraines have eased up so YAY for that. Doc says that controlling pain is critical for me right now because the brain does not do well with pain. It causes more swelling which causes more scarring which causes worse symptoms. Not good. So I am trying to stay on top of things.
  • Tell people what you are going through. This was a tough one for me until things got so bad. I mean, now that I can tell them this is chemo, it makes it a lot easier to explain. I used to try to suck it up and deal with it myself but ... I can't. I am just not capable of doing that anymore and it does a disservice to the people who are in my life. They need to know how bad things are -- things WILL get better but we are in the UGLY part right now. The Lyme is a living organism. We are using meds to kill it. It fights back by dumping toxins into the body -- hoping if it makes you miserable enough, you will stop the meds. Plus when we do kill it, the body has to have energy to get rid of the dead stuff. It is a huge mess. They have found that giving the body a break is a good thing -- lets the system catch up and get rid of crap and regroup to take it on again. So tomorrow I start the meds again.

Eh. Am running out of energy. Will write more tomorrow if I can. Today was a bit better -- I'll take that. Alan was home and it was so wonderful to be beside him. He didn't sign up for this shit -- and it sucks that he has gotten dragged through it with me. It really sucks.

More later.

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Wednesday, March 04, 2009

Bar Fight Rages On...

Alan showed me the funniest video about Sony products -- how they NEVER work and they ALWAYS blow up or break or ... the guy ends it by looking disgustedly at the camera and muttering "It never ENDS, this shit."

That makes me laugh every time I think about those words.

So where are we? In hell. Still. And the bar fights rages on. I have figured out a way to get up and down the stairs better -- either (a) don't go or (b) crawl. Yeah that is WAY safer than tottering on my not-so-steady legs.

We don't want another clattering Olive Oyl incident now, do we?

I think not.

Here are the current stats:

  • From hips down, insides of legs and feel feel numb and wooden

  • Sometimes everything is wooden AND frozen cold -- that's a real pisser

  • And other times, the heat starts and instead of frozen, it is excruciating ... like the way it hurts so bad when you come in from the snow and your feet start to warm up. Ow.

  • I look like Olive Oyl. Yeah that spindly, clattering stick figure who is the girlfriend of Popeye. I am trying to eat as much as possible and keep weight on but ... yeah. It sucks. But it is kind of funny. Kayla and I drew pictures of ourselves and they were just really funny because I was the spindly spider and she had this big poof of hair. Which is true -- the kid has short hair and it is SO thick that all she has to do it shake it around and POOF. There it goes.

  • Some freak outs -- some moments where scares blow through my mind like an open umbrella in the wind, tossing and blowing through. I just stand back and allow myself to watch it blow by without getting caught up. It is just temporary. It will pass. It does.

  • Fatigue is HUGE. Sometimes I will wake up and find that hours have gone by. That is unsettling but at least I am not awake and am getting a break from dealing with this shit. Which is nice.

  • Emotional mosh pit. But it passes. It never ends, this shit. So I swing between agony, sadness, frustration, anger, laughter, and ... well, you get the idea.

But you know what? I am MAKING IT THROUGH.

Slowly. Baby steps at a time. Crawling if needed.

But I. Am. Doing. This.

AND I found some positive things...

  • My vision is holding steady and deteriorating like it has done in the past.

  • I am actually getting times when my legs and feet are warm -- yes it hurts but it also means that the cold is not sticking all the time.

  • I can walk a little better sometimes -- not always bent over or dragging one leg.

  • My weight has not plummeted any further -- which is huge. Still a spindly 99 pounds but hey, I'll take it.

  • I can sleep!

  • My writing has been such a blessing to put my mind someplace else... my books and my humor are interesting... hopefully one day, other people will agree.

  • I think I figured out that I am allergic to feathers. Which is actually a HUGE thing considering that our bed has feather comforter, feather pillows and the furniture in the LR has both a couch and a huge chair stuffed with feathers. Yeah. So they are all going to be tossed out of the house as soon as I can find a way to get them out.

  • I get to buy a new bed and possibly LR furniture!