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?
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