A Fork In the Road

The realization of the trouble I was going to have getting proper treatment for this disease has come on slowly and painfully to say the least. For the last few days I have been horribly ill, and there doesn't seem to be an answer for any of it. But where would I even look to find that answer? The doctors have no idea. Nobody knows. I have never had more of a fight ahead of me and less energy to fight with before in my life.

A couple of days ago I came down with what I thought was a stomach virus, as my children were vomiting and feverish and generally ill. My nurse told me to skip my infusion for a day and pick it up again the next, and I felt better when I woke up that morning, better than I had in days. After hooking up my IV I noticed a couple of red raised bumps on my arm, so I watched them and finished up, noting no change. Everything was great for the rest of the day...surprisingly I had a complete absence of pain and fatigue, the realization of which was a testament to how constant those symptoms have been for me. I even went out of the house at about 10 PM to return some DVDs and pick up some cereal for the kids for breakfast the next morning. I couldn't believe it; I was amazed with myself the whole way there.

Things rapidly declined as I entered the grocery store, however. I started to feel light-headed, then remembered I hadn't eaten dinner, as my appetite has been scarce lately. (Still gaining weight like a champ, though, of course.) I decided, especially after the onset of a mini panic attack, that I'd grab a Snickers on the way out and promised myself I'd eat a decent meal as soon as I arrived home. Back at my house I started itching and noticed my arms and legs breaking out in huge, red, swollen welts, and I frantically dialed the doctor's number. The answering service snippily told me if this wasn't a medical emergency, to call back tomorrow morning, so I went to the emergency room. I was now in full panic attack mode, shivering, shaking, with my blood pressure pulsing at 144/92.

I tried to distract myself by watching TV once in the room, and while I waited for the nurses to treat me, thinking angry thoughts about anaphylactic shock that would go unnoticed, I continued to itch and tremble. I should have savored that time before they came in, because when they did, they injected Benadryl and Atarax directly into my IV. I have never felt so awful as I did in the 20 minutes that shit was cycling through my body in its initial waves. As soon as it hit me I quite literally went blind, seeing only white at first, then darkness. I heard myself say "I'm going to pass out" and heard the rails go up on the bed. I was so scared I was sure I was going to die right there of pure fright. My voice was the only thing that was working, and I could barely even hear it over the roaring noise in my head. I tried to lift my arms to fight something, anything, off, but they wouldn't move, and my legs had turned to lead as well. I was told to lie back and breathe, and I just kept thinking that things had never been this bad for me before. Not in three childbirths, hundreds of blood draws, several hospital stays, flus, mono, none of it was as awful as what had just been done to me. If I'd felt like fainting before, this spit in the face of light-headedness and starry vision. This was like something reaching up my nose and turning my brain inside out to induce unconsciousness, and I am trembling now as I type these words just remembering it. It seemed to be the mother of all blackouts but I was probably not completely under; I could still hear my own voice and was trying to control my breathing and just make everything stop, just stop. I had this fear that if I let go I'd wake up with my arms and legs amputated and a tube down my throat. I'm telling you, when I get like this, the imagination knows no bounds.

My eyes were blurry and burning but later only the heavy leadenness and tiredness remained. The emergency room nurse insisted I could not drive home alone, which I tended to agree with right then, and called me a cab (my husband was at home with all three kids, who were sleeping as it was about three in the morning, and who were still ill with the flu). I made it home and the next day still had that heavy feeling, but after visiting with my doctor was told to hold off on any more treatments until he decided what to do. Today I go back to find out if there is an alternative to what I've been going through, and there is so much I don't even know yet to be able to ask him. Surf any online Lyme Disease forum and there is so much information about disease stages and different antibiotics and treatments for co-infections and you just want to hang your head and say "done." So I have a decision to make; let someone else forge the road for me or leave no stone unturned, no question unasked and possibly further delay my treatment in favor of something that actually might work. The thousands of dollars others have spent to find the truth are not dollars I have at my fingertips to spend. The time it would take to sort through all that I may have going on inside is not time my brain can expend. Every day that passes I realize I have been in denial for far too long about what this disease has done to me and what the result will ultimately be if something isn't done. But can I fight for this? Do I have the strength? I can't imagine where it's going to come from. I am so tired, so worn out, that I sometimes wish I'd never even gotten the tests done, never even been diagnosed. Ignorance/bliss, blah blah blah, right?

So today I stand at a crossroads and I have to decide which way I'm going to turn. My doctor's appointment is this afternoon and what I say and ask and do there could make or break my recovery from this disease. I'm scared, I'm confused, and most of all, completely exhausted. What the hell am I going to do?

All About the IV

I wanted to write about my experience with getting the IV port put in my arm, and what has gone along with it. I've had it for starting on three weeks now, and it has been emotional. Ever hated something that was supposed to be good for you? Peas? Wearing a bra? Your husband? That pretty much sums up my feelings about this catheter, and it was definitely a huge piece of the reservation cake I was baking when it came to being treated for Lyme Disease.

I went to the Treatment and Procedures Department of the hospital to have it put in. I was alone; I thought it would be no big deal, it would only take a few minutes, and I could handle it on my own. The preparation began: warm blankets, an open-back gown, searching the TV for something effectively distracting (if I don't see the needle, I'm fine). I was getting a Peripherally Inserted Central Catheter, or PICC, meaning a tiny line would be threaded through a vein in my arm that loops above my heart. It would then have a port where I could get blood drawn or hook up my own IV so I could do my treatments myself at home. The ease of care was lost on me; it began to sound alarmingly invasive. I mulled it over as the nurses gathered their tools beyond the curtain.

A nurse came in and read to me from an informational pamphlet, and when she was done I realized I had just been pitched. Looking down at the pamphlet the complications seemed to be in huge type, and in absolutely enormous letters was a sentence that read something about a DNR order being waived for this procedure only. Sign here, saying you agree.

Is that what I should be worried about? I wondered. Nothing could dwarf the ignoring my right to not be resuscitated like doing something that would require me to be resuscitated in the first place! Shit, what had I gotten myself into? And with no one here with me to tell me how irrational I was for being scared of it!

What if a tiny poke was all the motivation my continuously palpitating heart needed to flop over and die? What if the nurse (not only a longtime technician but a one-time patient as well) accidentally pierced my vein and I bled to death in 7 seconds? What if one of those complications so enormously printed in the pamphlet happened and I was too ignorant to recognize it before it was too late? After grilling the nurse tearfully about other options, I nodded vigorously when offered a midline instead. I didn't know what the hell a midline was, but at least I didn't need to sign a paper about DNRs and the possibility of blood clots.

The nurses went about creating a sterile room. This was serious business. They draped me with sterile cloths, dressed in robes and masks. I tried to watch TV. My arm was washed with soap and water and swabbed with cold alcohol. An ultrasound was done and my arm marked for ease in differentiating vein from artery, and I felt a little poke as the numbing solution was administered, ironically enough. A big pinch as the catheter punctured the outer wall of the vein and then a few minutes of feeling nothing but a little pressure just above my elbow and they were done. They bandaged me, reassured me, and let me lay still for a bit so I could settle down and get my head together. Then I was off to the doctor's office to get my first IV treatment and a little bit of training on how to do it myself. I drove over there with no problems, just the normal tiny amount of discomfort that comes from having a foreign object sticking out of your skin.

While learning to infuse myself I found out a midline was the exact same thing as the PICC, only the line is about two inches shorter. It figures.

(*The picture above is owned by http://www.drugs.com/cg/peripherally-inserted-central-catheters-and-midline-catheters.html)

The first week was the worst; the discomfort in my arm was constant, and if I didn't turn just right it would pinch or pull and I had difficulty moving because of that. The first time I rolled over on it in my sleep and woke up with tingling fingers I panicked. I have to shower with a huge plastic glove that goes all the way to my shoulder roped off by a tight rubber band. (I could make it easier on myself and use Saranwrap, but I'm stubborn.) When I had the bandage changed the nurse's alcohol swab burned as if I'd stuck my arm in a fire. The hole in my arm oozed and my arm swelled. My fingers began to swell on my first treatment, and because I'm taking a penicillin derivative and am allergic to penicillin, I was apprehensive, to say the least, also unnecessarily. I was hyper vigilant and a pest to the nurses and learned to deal with all of it. But the truth is, it isn't worse than living with the symptoms of Lyme Disease. If this is all I have to suffer with to get rid of that, I think I'll take that any day.

Week two had me calling the nurse because I had some reddish-purple marks on my skin near the entry-point in my arm; apparently I had been moving around a little much and caused some slight bruising. The second bandage change was great...the damn thing itched so bad that the alcohol was like a giant scratching brush...it was just AAAAHHHHHH. My arm was still swollen but now the nurse put what I think she called a bio-patch on the wound to help with the oozing; now I didn't have to look at the hole anymore and everything seemed cleaner. At the beginning of week three now the bandage still itches something awful...but the pain and discomfort seems to have lessened considerably. I pull it around, the kids climb on me and bump it and for the most part, it's become like an extension of my body.

It is really easy to use, just as they told me it would be. I simply thaw my medicine for about an hour, clean the head of the tube with an alcohol pad (it has a valve to keep air from getting inside), flush with a syringe of saline, hook in the medicine, and sit still for about 30 minutes, watching TV, or I can even type. Then I unhook, flush with saline again, wrap it around my arm, and put it away under the little mesh-like sleeve that hides it. I'll post pictures at a later date, which may be helpful. With Lyme it is imperative that what you have to do be simple and easy to remember, and even on my worst days I barely have trouble with it at all.

It is also definitely itchy, annoying, and cumbersome, but not unbearable. Just as it becomes completely forgettable it will be time to take it out...and God help me that day, and the nurses who have to deal with me.

In the Beginning

I have to think back to when I first got sick, really sick. My doctors have been telling me this is early stage disease but my symptoms conflict with that theory very much. About nine years ago I came down with what I thought was the flu. My roommate and I lived in her townhouse where there were lots of cats and a dog, and I even had my own cat...I'm sure there was a tick in there somewhere, but that in particular I only vaguely remember. After that first bout of illness where I was throwing up and my glands were very swollen, I was fine for a few more weeks, then suddenly the sickness was back with a vengeance. This time the lymph nodes in my legs were so swollen and painful I couldn't walk. My mom told me to get my gallbladder checked. Two different idiotic doctors I visited said I'd be fine in three days and to go home and get some rest. I was 20 years old and had never been really ill before. I stayed in bed, tried to get over it, and in a week or so I was better...until a few weeks later, like clockwork, it returned. This went on for a few months, without being treated (no one thought I had anything more than the flu) and I finally attributed it to my monthly cycle as it seemed to come and go predictably enough to set a clock by. A few months later I found out I was pregnant with my first child...opening up a door to years of being misdiagnosed and ignored because I was a "tired mom".

The MVPS could easily become a "chicken or egg" argument, but it's probably very simple. My family has a history of autonomic disorder, which usually presents itself in a predisposed individual after trauma or infection. Lyme Disease could have been all that autonomic dysfunction was waiting for to allow it to rear its ugly head. A couple of years after my mysterious cyclical illness, and pregnant with my second child, I realized that I was incurably, abnormally tired. Of course this was written off as normal for a woman carrying another child not even 18 months after giving birth to the first one. But that day, I can see it so clearly in my mind, the day I realized something just wasn't right anymore, I sat outside my house in the gravel in frustration because I just couldn't find the strength to get up and go back inside. I was more tired and weak than I had ever been in my life, and I knew it wasn't just because I was pregnant.

Fast forward to child number three, two years later. I was hanging ornaments on the Christmas tree, only a few weeks into expecting my son, when my heart suddenly and inexplicably felt like a dying fish flopping in my chest. This frightening symptom would repeat throughout my pregnancy, blamed on the increased blood volume a woman has during gestation. When it didn't go away after the birth, I was found to have the valve prolapse.

But it wasn't enough explanation. I also began suffering strange neurological symptoms I found hard to completely explain away with MVPS. I all but stopped watching television because any time there were color or scene changes on the screen it provoked an odd twitch inside my brain, and my memory became faulty. I had problems with word retrieval which was very frustrating for a writer, and I would go into a room several times a day and forget why I was there, or how I'd gotten there. I'd drive to a building only to realize I should have been somewhere else. People would come up to me to say hello and I couldn't remember where I knew them from or who they were. At work at a call center, I had trouble explaining things I knew inside and out to customers on the phone and frighteningly, I began to stutter. I've never had a problem with my speech in my life, and now I couldn't even do my job.

Then there was the pain. It was just there, everywhere, all the time. I have good days and bad, and am learning to accept if I can't make it up the stairs right now the laundry is just going to have to wait until I can. But how do you give yourself permission for that when you're trying to run a household? You don't. You just feel like the laziest person in the world. But that doesn't mean you can force your body to do something it just won't do.

When I went to my cardiologist I never expected the test for Lyme Disease to come back positive - after all I'd already been tested once and was negative. In early stage disease Zithromax is an option, but I'd been on Z-packs several times over the year because of my children bringing home various illnesses from daycare. I'd even had a bout of pneumonia which I was on even stronger antibiotics to clear. I was in denial for several weeks after the diagnosis, thinking this couldn't be the culprit of all the symptoms I was suffering. But the more I learned the more I realized how horrible, how destructive, the bacteria from Lyme Disease can be. I was devastated to find I may have passed this on to my children or my husband. And more infuriated to learn that my doctors don't seem to want to acknowledge how long this has been taking its toll on my life. The truth is some days I think I don't have the energy to fight for what I deserve - for everything to be normal again.

Three more days until the support group meeting...then they get to hear all this too. You should be glad you can just click the X in the corner to shut me up.

Life With Lyme Symptoms

Today was pretty much a typical day for me since I started my treatment (a 28-day IV infusion of Ceftriaxone). I've been told because I have had an exacerbation of my symptoms that I may be having what is called a Herxheimer reaction, which is when the dying bacteria release toxins, making my symptoms much more pronounced than they typically are. In any given day I will have times of functionality and then there are times when, quite frankly, I can't do shit. I have a to-do list that is constantly being pushed to a different day, or crammed with things when I'm feeling well because I don't know when I'll have another chance to get it done.

This morning I woke up tired though I slept the entire night, and my brain was so foggy I couldn't think straight for most of the day. Imagine you've injected yourself with a horse tranquilizer and there are bombs falling outside that will destroy your entire house if you don't get up and get out, and you might have an inkling of what it feels like. After barely eating breakfast (my appetite hasn't been too good the last couple of days) I had a bout of hypoglycemia around noon and only ate enough and drank enough juice to keep myself alive. I tried to make a grocery list, tried to clean, but it was as if I was attempting to think and move through sludge at the bottom of a pond, as if my brain was irritated. Somewhere in there I fell asleep for a couple of hours and when I woke, the fogginess hadn't cleared. Most times it's made worse by a mid-day nap, I am not sure why. Went grocery shopping with my husband and three kids but barely made it through, feeling nauseous and not being able to walk for any length of time. Wal-mart in particular has become the bane of my existence lately, because it is so big the thought of marching across the store to pick up some milk is just unfathomable. Got home and took care of my IV infusion, which has left me more nauseous, dizzy, and with a hell of a headache. Nothing on that to do list is going to get done tonight, that's for sure. I don't even know if I'm going to be able to stand up for ten minutes in the shower.

I'm going to a Lyme Disease support group meeting on Thursday in Kansas City. Hopefully they'll tell me something I can stake hope in, or if nothing else, at least make me feel less alone in this whole thing.

From Terminally Un-ill to Ill-Prepared

I used to write about having Mitral Valve Prolapse Syndrome (MVPS) and Dysautonomia. True, my autonomic nervous system failure is very real, so when I finally dragged myself in for this year's check-up with the cardiologist she assured me she was going to try some different avenues this time, especially since I have every risk factor for heart disease but the smoking and family history. I was mainly concerned about what my several-times-a-day episodes of hypoglycemia were doing to my heart, and seemed to be going in the direction of having more POTS symptoms, a related disease I have yet to be diagnosed with. I did a tilt table test, which came back negative, but some routine labs she ran showed something very interesting: a Lyme Disease infection. She prescribed a Z-pack (at which I scoffed, having taken Zithromax at least 10 times over the past year thanks to kids in daycare) and referred me to an Infectious Disease doctor. In the days that followed, the more I educated myself about this disease the more I denied, surrendered, suffered, and endured until I realized this was going to be no ordinary struggle. Facing an uncertain future, I want to know that there are people out there like me.