May 6, 2016
It was June 2007. I was sitting in another doctor's office. Let's be honest, I was not a happy person. With all the hate and contempt my body could muster from all the hate I had for anyone in the medical profession, I sat and faced Dr. Burke.
10 god-damn minutes late. And I had to go to work.
When you have these illnesses, there is a lot of seething you do.
The seething is a nice break from total apathy in the same way breaking someone's leg takes their mind off of their broken arm.
Understand, in June 2007, I was done. In movies and TV it's this one moment the character "gets it." It's when they miss the goal or the girl gets away or whatever. And there is this moment when they are bummed. It's a single moment in those type of stories.
Giving up and surrendering to an existence until you can finally die isn't like that. It's not a moment in time. It's more like self-actualization. You didn't know it was there but suddenly, it had been there all the time. There no crying or fighting or emotion about it. It's like Tuesday. It's just. . .Tuesday one day and you are like "Ok, it's Tuesday."
If you knew me or talked to me during this time, you might not have known this. Because you saw me not as I was but as I wished I was. Happy, engaged and able to swallow correctly 100% of the time rather than trying to take a drink and then finding I forgot how to swallow then I am wearing my drink.
10 minutes late was the shortest wait ever for Dr. Burke. I once waited 24 hours. He was late to his own funeral.
Back Story
My Mom was responsible for this trip. She had been doing her own research, typing in what was going on and making calls. She re-visited the Lyme situation. She had found him. She called the Lyme Disease Association of Southeastern Pennsylvania and told the person everything about me. She got the names of Lyme Literate Doctors (LLD) in the area.
So, I was sitting there with my Mom ready to go through the somewhat awkward questions like: Were you emotionally or sexually abused? Did you Dad rape you? Did someone touched you? Was my boyfriend hitting me? Do you have an STD? Do you have mental problems?
Really awesome questions around you Mom.
You have to prove you didn't have those traumas and if you, God forbid, did have them, that was your diagnosis.
Enter Burke
Dr. Burke was a normal looking dude. He sort of had a calm about him. I guess when you deal with Lymies, you have a sort of ability to deal with complete insanity.
He had me stand up, then he told me to close my eyes. A feat that was laughable to me. A year or so before, I had stopped closing my eyes when standing. I would fall over. When I close my eyes, I lost my ability to find myself in the universe. Even when showering, I needed to hold on to something when washing my hair - or get soap in my eye.
Sweet, sweet apathy allowed me to do it rather than resist. And I almost fell right into the trash can. He had to grab me. Didn't know I was falling until I opened my eyes. To this day, my brain is not the best at keep me stable because of the damage.
Dr. Burke issued a general sobriety test. And I failed it.
"You saw a neurologist?" He questioned, looking over my helpful paper, "and the neurologist thought you were fine?"
It was a month or so before. The doctor never so much as touched me beyond shaking my hand. He only issues tested, he never did any type of neurological exam.
Besides - at this point, I would have assumed people do not stay vertical when standing and closing their eyes.
Or rather, if I just tried harder or went to the gym more, I would not have this problem.
Dr. Burke did something I requested from Dr. Walker - the Western Blot. He also scheduled a heart ultrasound and SPECT scan which is like an MRI but it takes moving pictures of your brain. You get to be injected with radiation about 30 minutes before the test - after the test, my Mom didn't want me around the TV or computer.
Off to the hospital. To the lab. To the bank because I just started a new job and did not have health insurance yet. FYI: a SPECT scan costs roughly $1100, MRI ranges between $800 to $1200 and CT costs about $400 to $600.
I Was A Cool Social Media Person
When I began the journey, I just got onto Facebook. I didn't realize I really liked MySpace, apparently. I think a friend of mine actually had to invite me into Facebook and you needed to have a college email address - that might have been while I was upset.
I don't remember but I have these notes to show me who I was at the time.
Actually finding and reading this note caused a reaction in me. Like, here I am making jokes and totally into Myspace at 27. And the death clock for me had moved to the "You got a couple months" o'clock.
I can read the words and I know what I went through - but even for me, it doesn't trigger how sick I was. How god-awful sick I was and how hard I was trying to be normal.
Here is the text:
Results Are In
Then I was back in the office for the results - "You have Lyme."
The what? It has a name? The monster eating my brain has a name? Am I faking it?
My thing was unknown and invisible. It was in my head and if I was strong enough and willed hard enough it would go away. It's name was lazy, attention-seeking, weak, get-over-it and not-again.
The irony as he showed me and told me about the results, this thing was in my head. My brain was so full of infection and covered in lacerations Dr. Burke told him I would probably have a stroke or begin having seizures in the next month or so without treatment. The infection had swelled my brain on the verge of a stroke and robbed it of blood in certain parts. The brain is fascinating - it keeps your most critical systems deep inside so in the event of a head injury, you won't lose critical things. At this point, the infection was in my central brain.
Part of a valve in my heart was paralyzed, flapping in the flow of blood uselessly. It was trying but it was being attacked.
My illness was still invisible but now it was known. If I could feel numbness I would have. I really just felt a mixture of shock and shed a few tears when no one was watching. I wondered what Lyme was - the same way a lot of people who don't KNOW think of Lyme. I knew my body was dying around me and if Lyme could do that, it was a pretty sucky thing.
One long, hard road was done and now what? Could I go home?
He asked me if I wanted treatment. Not in the way other doctors told me I needed to think myself better. But because it was really bad and it was only going to get worse.
Frankly, I did not care about either choice at the time. Sure. Treatment.
Dr. Burke did not tell me exactly how bad things where then. He told me later when I was more out of the woods. He knew I wouldn't have lived without treatment, but I needed to survive the first month. He planned the dosing of antibiotics accordingly - I would slowly have an increase in dosage depending on how well I tolerated it.
You don't think in terms of "tolerate" and "antibiotics." I'll tell you about that situation later.
He told me later if I survived the first month, he would estimated I would have a 40% chance of making it through everything. He wouldn't really know because he would have to see what co-infections I had and if they could be treated.
This was a lot.
On June 14, 2007, I had a PICC line put in and my first IV bag of antibiotics. I started with Ceftriaxone (Rocephin).
10 god-damn minutes late. And I had to go to work.
When you have these illnesses, there is a lot of seething you do.
The seething is a nice break from total apathy in the same way breaking someone's leg takes their mind off of their broken arm.
Understand, in June 2007, I was done. In movies and TV it's this one moment the character "gets it." It's when they miss the goal or the girl gets away or whatever. And there is this moment when they are bummed. It's a single moment in those type of stories.
Giving up and surrendering to an existence until you can finally die isn't like that. It's not a moment in time. It's more like self-actualization. You didn't know it was there but suddenly, it had been there all the time. There no crying or fighting or emotion about it. It's like Tuesday. It's just. . .Tuesday one day and you are like "Ok, it's Tuesday."
If you knew me or talked to me during this time, you might not have known this. Because you saw me not as I was but as I wished I was. Happy, engaged and able to swallow correctly 100% of the time rather than trying to take a drink and then finding I forgot how to swallow then I am wearing my drink.
10 minutes late was the shortest wait ever for Dr. Burke. I once waited 24 hours. He was late to his own funeral.
Back Story
My Mom was responsible for this trip. She had been doing her own research, typing in what was going on and making calls. She re-visited the Lyme situation. She had found him. She called the Lyme Disease Association of Southeastern Pennsylvania and told the person everything about me. She got the names of Lyme Literate Doctors (LLD) in the area.
So, I was sitting there with my Mom ready to go through the somewhat awkward questions like: Were you emotionally or sexually abused? Did you Dad rape you? Did someone touched you? Was my boyfriend hitting me? Do you have an STD? Do you have mental problems?
Really awesome questions around you Mom.
You have to prove you didn't have those traumas and if you, God forbid, did have them, that was your diagnosis.
Enter Burke
 |
| Burke |
He had me stand up, then he told me to close my eyes. A feat that was laughable to me. A year or so before, I had stopped closing my eyes when standing. I would fall over. When I close my eyes, I lost my ability to find myself in the universe. Even when showering, I needed to hold on to something when washing my hair - or get soap in my eye.
Sweet, sweet apathy allowed me to do it rather than resist. And I almost fell right into the trash can. He had to grab me. Didn't know I was falling until I opened my eyes. To this day, my brain is not the best at keep me stable because of the damage.
Dr. Burke issued a general sobriety test. And I failed it.
"You saw a neurologist?" He questioned, looking over my helpful paper, "and the neurologist thought you were fine?"
It was a month or so before. The doctor never so much as touched me beyond shaking my hand. He only issues tested, he never did any type of neurological exam.
Besides - at this point, I would have assumed people do not stay vertical when standing and closing their eyes.
Or rather, if I just tried harder or went to the gym more, I would not have this problem.
Dr. Burke did something I requested from Dr. Walker - the Western Blot. He also scheduled a heart ultrasound and SPECT scan which is like an MRI but it takes moving pictures of your brain. You get to be injected with radiation about 30 minutes before the test - after the test, my Mom didn't want me around the TV or computer.
Off to the hospital. To the lab. To the bank because I just started a new job and did not have health insurance yet. FYI: a SPECT scan costs roughly $1100, MRI ranges between $800 to $1200 and CT costs about $400 to $600.
I Was A Cool Social Media Person
When I began the journey, I just got onto Facebook. I didn't realize I really liked MySpace, apparently. I think a friend of mine actually had to invite me into Facebook and you needed to have a college email address - that might have been while I was upset.
I don't remember but I have these notes to show me who I was at the time.
Actually finding and reading this note caused a reaction in me. Like, here I am making jokes and totally into Myspace at 27. And the death clock for me had moved to the "You got a couple months" o'clock.
I can read the words and I know what I went through - but even for me, it doesn't trigger how sick I was. How god-awful sick I was and how hard I was trying to be normal.
Here is the text:
I hate facebook - it's a personal vendetta - so everything has been on Myspace. But, to keep everyone informed who wants to be. . .I'm pretty sick. Sick with what? I don't know. My chronic pain, fatigue and memory issues have been getting worse and worse. .yada yada. I am re-visiting the Lymes and had a blood test (again) for it. The doc is convinced (he's a specialist, 99.7% sure) I have Lymes and probably have had it for 10 years.
Which means potential for neurological, joint and heart damage. All which I am being checked out for in the next few weeks.
So. .in short and currently: I can't walk very well, I can't stand for very long, I can't remember conversations and I am constantly dizzy, nauseous and exhausted.
But, dude, I caught up on back episodes of Law and Order (CI/SVU) like it has been my job. I just can't really remember any of them.
I still freakin' LOVE Law and Order.
Then I was back in the office for the results - "You have Lyme."
The what? It has a name? The monster eating my brain has a name? Am I faking it?
My thing was unknown and invisible. It was in my head and if I was strong enough and willed hard enough it would go away. It's name was lazy, attention-seeking, weak, get-over-it and not-again.
The irony as he showed me and told me about the results, this thing was in my head. My brain was so full of infection and covered in lacerations Dr. Burke told him I would probably have a stroke or begin having seizures in the next month or so without treatment. The infection had swelled my brain on the verge of a stroke and robbed it of blood in certain parts. The brain is fascinating - it keeps your most critical systems deep inside so in the event of a head injury, you won't lose critical things. At this point, the infection was in my central brain.
Part of a valve in my heart was paralyzed, flapping in the flow of blood uselessly. It was trying but it was being attacked.
My illness was still invisible but now it was known. If I could feel numbness I would have. I really just felt a mixture of shock and shed a few tears when no one was watching. I wondered what Lyme was - the same way a lot of people who don't KNOW think of Lyme. I knew my body was dying around me and if Lyme could do that, it was a pretty sucky thing.
One long, hard road was done and now what? Could I go home?
He asked me if I wanted treatment. Not in the way other doctors told me I needed to think myself better. But because it was really bad and it was only going to get worse.
Frankly, I did not care about either choice at the time. Sure. Treatment.
Dr. Burke did not tell me exactly how bad things where then. He told me later when I was more out of the woods. He knew I wouldn't have lived without treatment, but I needed to survive the first month. He planned the dosing of antibiotics accordingly - I would slowly have an increase in dosage depending on how well I tolerated it.
You don't think in terms of "tolerate" and "antibiotics." I'll tell you about that situation later.
He told me later if I survived the first month, he would estimated I would have a 40% chance of making it through everything. He wouldn't really know because he would have to see what co-infections I had and if they could be treated.
This was a lot.
On June 14, 2007, I had a PICC line put in and my first IV bag of antibiotics. I started with Ceftriaxone (Rocephin).
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