The Bartonella Roller Coaster and General Ramblings

Treating Bartonella is a roller coaster ride, to say the least. So far, I've noticed subtle changes that indicate meds are working, so that's heartening. But, WHOA, serious roller coaster ride. In addition to the pain and discomfort typical of die-off reactions, I'm experiencing psychiatric die-off symptoms, including mood lability, periods of increased anxiety and depression, hypersensitivity, weepiness, rage, dissociation . . . the list goes on. Essentially, I'm Dr. Jekyll one minute, Mr. Hyde the next, repeat ad nauseam.

The symptoms aren't by any means new to me; I've dealt with them for most of my life. But I'm not used to experiencing them all at once and with such intensity. It changes from day to day and hour to hour, but a general pattern of anxiety and agitation in the evening has emerged. It's very . . . uncomfortable. But I'm finding that, as long as I ride it out, as opposed to getting stuck on how much I don't want to feel this way (!!!!!), it passes a lot more quickly and I feel a lot more sane.


I'm on consecutive day 8 of IV Zithromax, which won't be the norm, as I'm supposed to infuse 4 days of Zithromax, then 3 days of Rifampin, then back to Zithromax, etc. But the schedule got screwed up since I started with Rifampin the first day, then Zith the second day, then back to Rifampin -- or something like that -- so I'll start my normal schedule tomorrow. I've been told that Rifampin is harsh and difficult to tolerate, but I didn't feel much in the way of a die-off reaction the 2 days I've taken it so far, whereas I had an almost immediate die-off reaction from Zith. Maybe this means I tolerate it well? Or it may not have built up enough in my system to cause a major reaction? Or both?

I'm relieved that tomorrow's a Rifampin day because Zith makes me feel so foggy and out of it.  But what I don't like about Rifampin is that I have to take it twice a day, 12 hours apart, and prepare each day's doses in the morning. First of all, I don't typically get up in the "morning," so I'm going to have to set my alarm to wake me at a decent hour, lest I want to infuse my second dose at 2am. What I do like about Rifampin is that it only takes about 30 minutes to infuse, as opposed to the 90 or so minutes it takes to infuse Zith. True, I'm using an infusion ball and not an IV bag, so I don't have to rely on gravity, nor do I have to remain in one place for the duration of the infusion, but I find my line gets caught on just about everything when I'm active during an infusion, so I tend to stay in one place.

You know what freaks me out about having a PICC line? AIR BUBBLES. Apparently, "microbubbles" are normal and won't hurt me, but they scare the hell out of me. Yesterday, mid-infusion, I got scared because the little bubbles seemed to be grouping together to form larger bubbles, so I unscrewed my line and called the nurse whose cell # I have for any questions or concerns. She calmed me down (this was not the first time she's had to calm me down over the phone) and told me that, though they wouldn't hurt me, I could get rid of the bubbles by pulling them out with a saline syringe, and then just reattach to my Zith line and finish the infusion. So, I screwed on the saline syringe, pulled out the bubbles (and some blood, too) to my satisfaction, and resumed my infusion. After that little freak out, I was totally spent so I pretty much curled into the fetal position to minister to my anxieties, and eventually passed out for a couple of hours. I hope today's infusion is less eventful.



I'll end it here because all I'm doing right now is rambling, and that's best left for my paper journal. I think some SuDoku is in order.

Sweetness by Stephen Dunn

Just when it has seemed I couldn’t bear
one more friend
waking with a tumor, one more maniac

with a perfect reason, often a sweetness
has come
and changed nothing in the world

except the way I stumbled through it,
for a while lost
in the ignorance of loving

someone or something, the world shrunk
to mouth-size,
hand-size, and never seeming small.

I acknowledge there is no sweetness
that doesn’t leave a stain,
no sweetness that’s ever sufficiently sweet ....

Tonight a friend called to say his lover
was killed in a car
he was driving. His voice was low

and guttural, he repeated what he needed
to repeat, and I repeated
the one or two words we have for such grief

until we were speaking only in tones.
Often a sweetness comes
as if on loan, stays just long enough

to make sense of what it means to be alive,
then returns to its dark
source. As for me, I don’t care

where it’s been, or what bitter road
it’s traveled
to come so far, to taste so good


______________________________


A good friend of mine posted this poem to Facebook today and, since it's a poem I love, I decided to share it here. If you're in the mood to read some good poetry, check out Words Like Oxygen, the blog where I post my favorite poems. 

I've got my PICC line and all is well.

I'm exhausted, so this won't be as coherent as I'd like, but I'll do my best.

The insertion yesterday was painless, though really bloody, but in an awesome way. Then again, I love horror movies and gore, so to someone else the experience might be really harrowing.

My mom and two of my sisters came and watched the insertion. One of my sisters had to leave the room at some point because when it was over and the woman was cleaning the blood off of me, there were huge clots of it hanging off my arm. It looked like pieces of liver. AWESOME. My sister was only out of the room briefly though, and had taken a bunch of pictures of the procedure, at my request. I haven't seen them yet, but depending on how nasty they are, I may post them.

I had expected to get the line in my left (non-dominant) arm, but got it in my right instead. Supposedly there are less problems in the right arm. I'd also expected it to be above my elbow, but it's more like in the crook of it because that's where the vein was juciest. Having it in my right arm is kind of a pain in the butt, but I expect I'll get used to it pretty quickly.

After the insertion, I got my first infusion of Rifampin. It went well. No die-off reaction yet. Today I went back to the doctor's office to get my dressing changed -- they put on a pressure dressing for the first 24 hours. Then I got my first infusion of Zithromax. Since it takes about 90 minutes, I started it at the office and then went home after they saw I wasn't having a bad reaction to it. Since I've been on oral Zithromax in the past, they didn't insist on keeping me for the whole infusion.

Once I'm done infusing, I have to flush my line with saline, which is so weird because I can actually taste it. Then I flush with Heparin to make sure there's no clotting happening. And that's it.


I had wanted to write a much more detailed entry about this whole experience, but my brain is too mushy for that today. In fact, if this entry makes much sense at all, I'll consider it a success.

I am nothing if not consistently inconsistent.

Again, it has been too long since my last post. Oh well. I have been writing more lately, but only for a very select audience. My train of thought (when I have a somewhat cohesive one) tends to meander, and may not necessarily have a clear point, so I choose not to share it with the Public. Instead, I write in my paper journal or in my private online journal. However, today I have something to say:

I AM FINALLY GETTING MY PICC LINE!

Sure, it only took a year and two months to finally get it sorted out and scheduled (!!!!), but the day is here. In fact, my doctor appointment is in less than three hours -- so I really should get up sooner than later, but first I want to put into words how I feel about this whole thing.


How do I feel about it?

Well, yesterday, a friend asked me if I was excited about finally getting my line. I said, no, I don't think "excited" is the right word. If I look at the big picture, then yes, I'm more excited than not about the prospect of receiving effective treatment that will allow me to experience a sense of normalcy. I will eventually be able to work and to go back to school. I'll be able to make plans without having to cancel at the last minute. But, right now, I'm not thinking big-picture; I'm thinking, "Oh my god, they're going to thread a line up a vein in my arm and down into my chest, and then they're going to infuse that line with potent antibiotics that will make me sick, and then I'm going to be miserable...." That line of thought can go on for quite some time, spiraling into even more catastrophic thinking if I let it, but I rarely do. Something else I try not to think about is the fact that I will have to clear my line with heparin every single day, so as to avoid a blood clot. Oh, and I also try not to think about the potential for sepsis.

::sigh::

I am feeling optimistic about the effectiveness of this treatment though. Yes, it will make me miserable at first, but what we're treating (Bartonellosis, a common co-infection) is the source of so many of my most awful symptoms. So, once I go through this treatment, my quality of life should vastly improve.


I'll leave you with a picture of my left arm, pre-line. In several hours, I will have a dressing wrapped around my arm, above my elbow, covering the site of the line, keeping it sterile. I'll have to figure out how to wrap it up so I can shower, because I can't get it wet. Luckily, I have an amazing community of friends with Lyme Disease who have already gone through this and have given me pointers on what works and what doesn't work re: showering/covering the line.

Now, I'm off to shower, dress, and head to my doctor's office. Wish me luck!

It's been a while.

It's been many months since I last posted to this blog. There are a few reasons for my absence. Firstly, my cognitive symptoms worsened and stayed that way for a while, so writing coherently was difficult. It felt more like pulling teeth than anything else, and if I couldn't enjoy it, what was the point?

Then there's the whole "getting a hell of a lot worse before you get better" deal that comes with Lyme Disease and treatment. For a long time, I just wasn't feeling like myself. In fact, it's only very recently that I've started to feel like my body and mind are in synch even part of the time. For more days than I can count, I felt like I was standing outside myself, watching my life go by. I didn't feel real. Unfortunately, this is not uncommon; it is a symptom of Lyme Disease and co-infections called depersonalization. There's also the feeling of the world outside oneself being unreal. That's called derealization. I experienced a lot of both. And, on top of that, or perhaps as a result of it, I spent a lot of time feeling as though I was losing my mind -- again, not an uncommon symptom of the disease.

It's only this past week or so that I've felt vaguely human and (dare I say it?) more like myself. It may last, it may not last, but I'll take what I can get. Essentially, I've found myself more motivated to get out and SOCIALIZE! This is HUGE for me. Lack of motivation (another common symptom) has been a major problem. I guess it makes sense considering so many of  my Lyme symptoms are psychiatric in nature. So the fact that I want to get out of bed when I wake up, jump in the shower, and leave the house is a markedly notable improvement. That coupled with a recent increase in energy/endurance, have made it so that I feel more like a member of the human race. And it feels fantastic.

In 2 weeks, I'm finished with the course of  IM Bicillin (intramuscular injections of penicillin) that started 14 weeks ago. The next step is to have a PICC (peripherally-inserted central catheter) line inserted and start IV antibiotics. I'm both excited and frightened at the thought of this. I'm don't love the idea of threading a line into my superior vena cava and infusing myself with high doses of IV antibiotics, but I DO like the idea of continuing to feel better.

So, onward I go.

Invictus by William Ernest Henley

Out of the night that covers me,
Black as the Pit from pole to pole,
I thank whatever gods may be
For my unconquerable soul.

In the fell clutch of circumstance
I have not winced nor cried aloud.
Under the bludgeonings of chance
My head is bloody, but unbowed.

Beyond this place of wrath and tears
Looms but the Horror of the shade,
And yet the menace of the years
Finds, and shall find, me unafraid.

It matters not how strait the gate,
How charged with punishments the scroll,
I am the master of my fate:
I am the captain of my soul.

Learning from Lyme

It's strange how the daily struggles of living with this disease can shift so subtly. Last month I was dealing with hardcore psychiatric symptoms -- which means there was probably die-off of the infection in my brain -- and struggling to make it through each hour. These days, I'm struggling less with simply existing and I'm thinking about the future. Sometimes thinking about the future is exciting, but sometimes it gets me down because I become acutely aware of the distance between where my functioning and health are currently, and where they'll have to be in order for me to achieve my vision of the future. That's where letting go comes in.

If becoming ill with Lyme Disease has taught me anything, it's that control is an illusion. Like Death Cab for Cutie sings in their song "What Sarah Said": "...every plan is a tiny prayer to father time."
When we're generally healthy, we make plans as a matter of fact. We assume that, unless something cataclysmic happens, we will get to the X on our map of The Future. We assume that there is a Future, and then if things don't go as planned, we mourn what we believe could have/should have been. We forget that our grand plans for the Future are only ideas and never were they actual realities. We mourn the loss of what we thought was rightly ours, though it never was.

I've mourned a lot. I could keep mourning the loss of what I thought was mine for the taking, but I've found my time and energy are better spent accepting what I know to be true: we can tentatively plan for the future and hope that when we get there it somewhat resembles the life we'd envisioned; however, becoming too attached and identified with our plans is counterproductive to leading a fulfilling life for a couple of reasons. Firstly, by becoming attached to and identified with who & what we want to be, and what we want to achieve, we lose focus on what we have now and who we already are (which I believe is essential and unchanging). Secondly, by letting go and focusing our energies on the present, we may find that where we end up is exactly where we want to be -- only we didn't know that 2 years ago when we had our sights set on some pie-in-the-sky idea. Essentially, I believe that by letting go, focusing on the present, and not worrying too much about the future, I will experience less suffering because I will not have lost anything, as I was not holding onto anything. And I will be living a life more in line with my current values. Also, by letting go of that over which I have no control, I'm free to focus my energy on the things I can control, like how I react to the events in my life.

So, that's where I'm at. It's a struggle, for sure. I routinely find myself worrying about the future, and routinely must remind myself that the future will take care of itself as long as I take care of the present. I am by no means adept at this, but it's a start. And it's something that living with Lyme Disease has taught me.

Opening to Possbility

This past week has been a difficult one. I've been experiencing an increase in some particularly awful symptoms as a result of die-off, a phenomenon known as the Herxheimer reaction (a "herx"). Basically, this means that my meds are doing their job and killing my infections, which leads to a leaching of toxins into my body that, for a time, make my symptoms worse (also known as a healing crisis). Most recently, the symptoms have been psychiatric in nature -- to me, the very worst kind of symptoms. I have been moody, weepy, severely anxious, and depressed. It has taken very little to make me feel like throwing a hissy fit, though I have been able to quell those urges. Essentially, I've felt like an extremely angsty teenager again, times 100.

It's one thing to experience an increase in symptoms that manifest themselves physically (pain, oversensitivity to stimuli, nausea, etc.) -- that kind of die-off reaction is no fun either, but I can use my mind to make the experience tolerable. For example, I can meditate; I can use guided imagery to relax my body and decrease my experience of pain; I can distract myself from the discomfort by playing Scrabble and doing crossword puzzles; I can watch a movie; I can, essentially, use the concept of mind over matter to negotiate the pain and discomfort of my symptoms in such a way that I experience less suffering. However, when the pain is primarily psychic in nature, I'm left flailing, feeling as though the ground has given out from under me and it's anyone's guess as to which way is up. Think: Alice falling down the rabbit hole.

So what's a person to do when that which comprises their very sense of self is being attacked?

That's the question I have been struggling with.

I've actually come up with a few answers that helped me get through it:

1. Rely on history to repeat itself: Everything is in flux; change is the only constant (as far as I know). Bad moods pass, as do good moods. Periods of increased symptomatology pass, as do periods of Good Days. Logically, it follows that my increased psychiatric symptoms will pass, too. They have come and gone before; why should this time be different? 
2. Don't try to think your way out of the hole: It's tempting to try to reason your way out of the abysmal place you're in when you feel so awful. DON'T DO IT. "Logic" that comes from a place of severe anxiety and negativity will not be sound, and you will likely think yourself into even murkier waters. 
3. In fact, don't think: Now, when I say "don't think," I don't mean become a vegetable. I mean don't think ABOUT the bad place you're in. Don't think ABOUT what it supposedly means. Or what it says about your character or where in your childhood was the root of your dysfunction. Etc., etc. This will not end well. You'll tie yourself up in knots with these lines of thinking. You'll MAKE problems for yourself. Instead, remind yourself that what you're experiencing is PHYSICAL. It is a result of a BRAIN INFECTION. And once it passes, you will see it for what it was: an aberration caused by a disease; an aberration that others have experienced and that I have read about and that is well known to be a symptom of the healing crisis.
4. Connect with other human beings: Spend time with loved ones who understand that you're going through a difficult time (particularly, loved ones who don't try to 'fix' you). Let those loved ones drag you out of the house, even if you're positive that nothing you do will make you feel better (that's the infection talking). Spend time outdoors if possible. Go to the movies. Go out to eat. Just DO NOT SIT ALONE IN YOUR ROOM, RUMINATING. It WILL make you feel worse, whereas going out may not make you feel wonderful, but probably won't do any lasting damage.
5. *Open yourself to possibilities*: Allow yourself to entertain the possibility that going out and DOING something may change the way you feel. Simply be open to it. This is not an active thing, this opening up to possibility. Rather, it is letting yourself go with the flow instead of trying to control what you feel. Once you let go, it's amazing the number of positive things that can show up in your life.

Yesterday, I grudgingly allowed my mother to drag me out of the house. We went to a nearby park where she did some power-walking and I listened to music on my iPod and wrote in my journal while taking in the beautiful scenery. Wait -- I said beautiful scenery. That's right -- I actually opened myself to the possibility of positivity and, right in front of me, staring me dead in the face, was such beauty. And I was able to enjoy it.

After the park, we went to lunch. I allowed myself to experience whatever feelings emerged.  There were some tears, sure. But there was also this painting on the wall that I couldn't take my eyes off of for the whole meal: it was a stanza from an Emily Dickinson poem I love. It read:

Hope is the thing with feathers
That perches in the soul,
And sings the tune--without the words,
And never stops at all....

Each letter was painted in a different colored square, the effect that of a patchwork quilt . In the middle of the square piece of wood onto which this was painted, was a simple rendering of a bird, singing.

I loved the piece's juxtaposition of profundity and simplicity. I loved the colors -- soothing blues and reds and oranges that made me think of a country kitchen. Near the end of the meal, I pointed it out to my mom, who also liked it. It made me smile. I felt a brief moment of something akin to peace.

After lunch, my mother had to go grocery shopping. She offered to drop me at home, since it was on the way. I declined, said I would wait in the car. At the last moment, I decided to go inside with her. Usually, large stores make me disoriented from all the fluorescent lighting and overwhelmingly colorful displays of products everywhere. But somehow, I made it through without feeling very disoriented, only a few of moments of dizziness here and there. By the time we were in the checkout line, I realized my mood had lifted and I felt better than I had in days. I was amazed. Immediately, my brain was off and running, trying to isolate the factors that might have contributed to this Good Mood. But I caught myself and decided to simply accept how I felt and enjoy it.

My first instinct is usually to latch tightly onto the positive feeling and then figure out a way I can manufacture it when next I need it, but time and time again, I find that there is no  one formula for happiness. No way to manufacture it such that it is genuine and true. All I can do is let go, stop trying to fight what I feel, and trust that my mindful awareness of the present moment will inform the next moment, and the next, and so on. Essentially, all I can do is live in the NOW. I can think about the future but that won't change anything. It'll just make me anxious and I'll end up missing what's right in front of me.

This is a lesson I've 'learned' over and over. It's something I routinely forget as I'm tripped up by the little peaks and valleys of daily life. When I'm lucky, and when I open myself to possibility, I remember the wisdom of the present moment and it is transformative.

Back to the idea of my sense of self being attacked. Yes, that is what it feels like. It is disorienting and confusing and I feel irrational. But these are feelings and sensory experiences; they are not Me. What is Me, what is True, is lasting and resides in moments of  mindful awareness. I am the Observer, the one who articulates the experience, who is rational enough to realize that Thinking her way out of a depressed state is akin to digging a her way to outer space.
 

*Note to self: Reread this entry daily.

Ay, there's the rub!

If you have been diagnosed with Lyme Disease, there's an excellent chance the journey to diagnosis was a long and frustrating one. I've heard from more than a few people that the day they were finally diagnosed was one of the happiest days of their lives! I know I cried tears of joy when I was diagnosed and actually felt validated by a medical professional. Too often we have had our symptoms dismissed as psychosomatic. We have been told, over and over and over, that all our lab tests are normal so there can't possibly be anything physically wrong; it must be psychological, here's a referral to a shrink. In fact, we may have come to believe the things our doctors said. We may have begun to question our own sanity. But ultimately, some inner knowledge propelled us forward until we had a real diagnosis.

Though I received my diagnosis over a year ago and am responding to treatment, there's still some part of me that, on occasion, thinks, "Maybe it IS in your head." How could that be? How could I be seeing a world-renowned specialist, be responding to treatment, and still have that question pop up in my head? Well, it's because Lyme Disease is a tricky thing: you never know what you'll feel like from one day to the next. Often, I don't know how I'll feel from one hour to the next. In fact, I'll have days when I feel almost NORMAL (though my version of "normal" may be a far cry from yours). Those days are fantastic and I soak them up, breathe them in, write them down, and generally bask in the glory of feeling Human. However, they're often what catalyze those niggling doubts in the back of my mind. Especially if I have a slew of Good Days in a row. Fortunately (or unfortunately, depending on how you look at it) those doubts stop in their tracks when the Good Days end and I'm holed up in bed, recuperating from the exertion of all the activities I packed into those glorious days!

If this reality is hard for me to swallow, I can't imagine what the people around me must think! Well, actually, I know what they think because we talk about it, but do you see where I'm going with this? It's hard for people to grasp, especially if they're not going through it themselves. But that's where communication and education are KEY. I may have explained the unpredictable nature of this illness to my mother ten, twenty, one-hundred times, and may have to do so again, but each time it helps. Each time she understands a bit more. And when I share with her my own frustration and confoundment at these things that are difficult to grasp from the outside, she sees how we're in similar positions, puzzling over the mind-bending nature of this illness.

In the end, I can only accept what is and appreciate the good days while learning to thrive despite (or because of?) the bad ones. Illness is a bitch of a teacher, but if you're open to it, you'll be amazed at the opportunities it offers for growth (but that is a subject for a different post).

Help a good person out!

Good Mood Gig from SAM-e

I've been voting for Lori (@GoodMoodBlogger on Twitter) for this job opportunity through SAM-e because of the work she does to promote real, down-to-earth positivity via her blog http://seeinggood.com. She's a good writer (with good grammar, thank GOD!) who is not above using her own foibles to illustrate a lesson learned and impart some hard-earned wisdom. Check out her blog and see for yourself. If you like what you read, please vote! You can vote daily. And if you don't feel like taking the time to read her blog, vote for her on faith.