Week 11 of Getting My Ass Kicked

Week 11 -- July 18, 2010

Why start here? Why not start at Week 1?? Er, that would be because I have been a mess.

I am getting pounded with experimental medication. Many others have gone before me on these meds but not many out here on this coast. So I can't give many details... yet. But starting now, I will try to give some updates. I have been keeping careful notes of all the ugliness as I go through this mess and one day I will write it all up. But for now I can at least show what it looks like to get my ass kicked and how to find the courage to walk in there once a week knowing how bad it is going to be yet doing it anyway.

It is what it is.

There is a payoff. Oh yes, a BIG payoff and that would be being healed. That is what this treatment does... it pounds the crap out of Lyme bacteria. Babesia. Bartonella. Erlichia (sp?). And all the whopping loads of virus I have been infected with. This treatment and the promise of getting out of this shitpile is the reason why once a week I walk into my doctor and let him kick my ass. Then pay him and say "thank you"... knowing I have a week of Hell to look forward to.

This is The Way Out if getting my ass kicked every week is just what needs to be done to push through to the other side... well, bring it on. So I haul my scrawny (98 pounds) but scrappy ass in there and deal with it.
I will admit to moments of defiance... like last week when I saw the huge pile of medications he had put together and one fell off, I said "DO NOT pick THAT up. Just LEAVE IT."
He laughed and picked it up and pounded me with it anyway.
Hey I tried.

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.

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.

Healer

I thought he was going to be just another doctor... but he wasn't.
Just another doctor, I mean.

My current doctor is unbelievably good and should be called "Healer" because he is so much more than labs and medication. Right now, I feel like one of those jigsaw puzzles with the pieces all messed up and the picture not fitting together... my doctor knows what the picture should look like and is putting different sections together methodically and consistently. He can see the big picture of how the brain and body work together -- or don't as in my case -- and slowly starts rearranging the pieces until they start to fit together the way they should. He understood me and my garbled descriptions of all my weird symptoms without raising an eyebrow or looking freaked out.

Which is saying something, believe me.

I have learned so much from this man... he says that one thing that doctors don't recognize or help with in Lyme patients is the effect of Lyme on the middle brain. I can tell you from intimate experience that it SUCKS to have this stuff in my system but at least now he has explained what is happening so I understand it. He said that I need to view my brain and energy like this: I have $30 bucks for gas and that is it -- once that is used, there ain't no more. So I fill up my tank. If I decide to use it all up in one go, then I will find myself on the side of the road. If I use it in small amounts with breaks in between, then I can make that $30 bucks last awhile and NOT get left on the side of the road.
What happens when I use it all? I wanted to know.

Well, the middle brain gets overstimulated. This can happen from too much sun without polarized sunglasses or watching TV or playing computer games or being in a store with those horrible lights overhead or... It causes the brain to get so fatigued and trashed that the swelling gets worse which makes my symptoms worse.

Ah. So that explains a lot.

He said that finding ways to manage my energy and keep the brain from getting overstimulated is crucial right now... and he has some interesting ways to stretch my limited amount of energy as far as we can. But before he gives me his tricks for stretching energy, he does all these tests in the office to see how my brain is functioning. He can tell exactly what areas of my brain are not working with these tests -- it is fascinating in weird way.

In my next post I will explain what tests he does as well as the tricks he has me use to help extend my energy and keep my brain from getting overstimulated. I wish I could do that now but am done on the computer for now. Too tired and vision is blurry.
I hate ticks.

Wow! You look GREAT! How'd you lose all that weight?

Having people say that to me is one of the most surreal conversations ...
I am so ill right now yet... I don't look sick ... I mean, I don't have a limb hanging off. But the weight loss is pretty scary.
At least to me, anyway.

My doctors tell me that this is how some viruses behave.... some people lose weight, like me. Other people gain weight or fluid. I can tell you from present experience that losing this much weight is NOT pleasant or comfortable. I feel like one of those shivery Chihuahuas... you know the ones? They wear little sweaters all the time and have huge fluffy beds to lay on?
Yeah, that's me right now. I make jokes about my "Chihuahua blanket" that I have to use at night to sleep on... it just hurts too much to lay on the mattress without it. And I am cold all of the time since I have lost all the fat.
It sucks. Don't go thinking -- oooh that is great! No fat! Noooo. Your body needs balance and without it -- well, things are very uncomfortable.

For awhile, I was worried I had cancer or a tumor or something really horrible.
I don't have cancer or a tumor, but I DO have something really horrible and it is called Lyme disease. I have Lyme and at least two other co-infections: Babesia and Bartonella. Babesia is awful -- they tell me that the symptoms are like Malaria and that they use Malaria medication to fight it. All I know is the awful cold spots I get that feel like I have a ball of burning ice inside parts of my body -- it is so cold that it burns. Sometimes I get spots over my vision or I can't get my eye to stay on one spot... the bone and joint pain gets really bad ... and the migraine pain is a 12 on a scale of 1-10. There's more stuff but I can't think about it right now -- too close to home and I need to get away from thinking about it.

So. Yeah, this is the sickest I have ever been. And up until about a month agao, I felt so alone... so scared... like I had dropped down a deep well and getting out looked impossible.
Until Dr. H and Dr. F.

Dr. H is a Lyme expert and worked at iGenex (THE lab for Lyme testing). He KNOWS Lyme and all of the co-infections, he knows how to read the blood tests, he knows the symptoms inside and out.
And he sent me to Dr. F. He called Dr. F the "architect"... which made no sense to me at the time but now?
I get it.
And Dr. F is my ticket out of this mess. More about him in my next post.

I got bit by a tick and it made me sick

I am only making a joke because things are that bad right now -- so bad that I HAVE to find some humor wherever possible... I have also taken to wearing a lime necklace. You know -- because I have LYME disease.... get it?

But whatever.

Before I spew out stuff about Lyme, you should know that I live in California. Which is not known as a hotspot for Lyme. But guess where my family lives?

On the East coast.
In a log cabin.
In the middle of a bunch of acres of woods.

Here is my promise: I am going to detail my fight with this beast that is called Lyme Disease (as defined in Wikipedia):

• Lyme disease, or borreliosis, is an emerging infectious disease caused by bacteria from the genus Borrelia.[1] The vector of infection is typically the bite of an infected black-legged or deer tick

I don't know whether to be horrified or happy that Google showed 13,900,00 results when I looked up "Lyme disease". Oddly enough, I got 22,100,00 when I looked up just "Lyme". Huh.

The long and short of it is this: I got bit by a tick and it made me sick.

OR

It could be MS.

Yeah, that is also a possibility.

No one knows for sure because when I had an MRI, it showed these white spots on my brain that could be from either diagnosis. The good news is that the white spots do heal... but the bad news is that both conditions cause me to make more of them.

On the Lyme end of things, I did get a positive blot test and iGeneX (lab in Palo Alto, California) blood test results that were positive for Lyme AND a co-infection. Co-infection?? What the heck is THAT? Well, my friend, let me tell you: this Lyme bacteria is smart. Really smart. It "re-activates" other dormant viruses in your body! Makes them be active again. So on top of Lyme, you now have some other hideous thing to deal with. And your body spins its wheels fighting these things ... so the Lyme says "oooh look over there -- THAT virus is SO much more interesting than silly, non-threatening little me over here." The bad thing about that is you MUST treat the co-infection if you want any chance of getting to the Lyme. Great. Just great.

The Lyme Lady (as I call my doctor who treats me for Lyme) is quite brilliant and I am extremely lucky to have found a doctor out here in California who treats Lyme.... but she doesn't always understand that it isn't just about being brilliant and knowing medications. It is about trust and believing in her and knowing that she is there for me and believes I can get better.

Which is not how I have felt -- I left her office last time in tears. I felt like I was sent out to walk on a high high teeny tiny rope way above the ground as she scoots me on my way, pushing 4 prescriptions into my hands that I can "try and see what works". Talk about terrifying. I have been paralyzed with fear because these medications make you worse.
That's the crappy thing about killing this stuff -- you gotta kill it. And you feel worse while you are doing it. My brain cannot even grasp feeling worse -- is that even possible???

So let's review, shall we? I am standing at the top of a very high tent, ready to walk across a teeny tiny rope -- the only way out is across -- and I am clutching a fistful of prescriptions that may or may not help me make it to the other side ...
No safety net. No words of comfort that "you'll make it! We'll be there for you!" No reassurance that someone will be down there if I should slip or fall or get scared or need help.

You get paralyzed with fear in situations like this. And, just for the record, I have never been paralyzed by fear about anything. This is not a pleasant feeling by any stretch of the imagination.
And, if I am honest, I am getting pretty pissed off. The only way out is that damn rope and any idiot should know that you need support. Lots of support to even take the first step.

So... here's the thing. Part of me doesn't even want to write about this. Just getting this far is making me anxious ... because I am trapped inside this body and surrounded by nasty symptoms that just appear and disappear without warning. It's bad enough that I feel so horrible all of the time... I can't get away, you know? Do I really want to rehash this crap and have it stare at me, reminding me once again how heinous this whole thing is???

I don't know. Maybe.

One sweet, piece of hope in the midst of all this:
Oddly enough, just this week, I finally found a doctor who actually said these exact words to me: "Wendy, I have got your back."
It took my breath away -- what powerful words. So so powerful. I burst into tears because I no longer felt like I was walking a tiny rope way up high with no safety net and no one to catch me. He's there.

And it is okay to take another step on that teeny tiny rope, buffeted by wind and struggling to keep going, step by step.

If anyone out there wants to hear my story -- let me know. It may be worth it to write it down as I go through treatment which starts -- oh, like this week. But am too tired right now so.... tomorrow it is.

If I do decide to write, you can bet that it will be brutally honest but also have humor.... because that, I have found, is the only way to find the strength to take a step forward... and then another... and then another.

Being sick really really sucks. No one should suffer the symptoms I am dealing with -- not even my worst enemy. I would not wish this on anyone.

I hate ticks. And I can't even say "Bite me" anymore because.... well, uh NO THANKS.
I've had enough of THAT, thank you.