Friday, October 29, 2010

Body in Revolt.

 

"I am in pain, suffering, stifled in a twilight of tragic chance. This is my life, the Lyme life, the burden I am forced to carry and no choice in the matter did I ever have." . . . . . . . . . . . . . . . . . 

I often suffer from an inflammatory experience that I call "Broken Bone Syndrome", that leaves me feeling like a hit and run victim who did not receive any medical attention. It's a tiring trial and by no means am I special for it. I am one of millions locked in battle with a malady that found us in stealth. So often do others take for granted the simple things in life that pass us by each day, whereas those of us in this seat must savor each moment. Symptoms come and go and with them goes the ability to do the things you love. Lyme is loss, no other words describe it better. I wane often between complete despair and enveloping optimism, the earth trembling in the wake of my strength. The brevity of both my light and my dark are an ever-present atomic force. I have grown to understand the separation of the body and the mind, so often ascending from the triviality of the infectious fire that desecrates my body each and every day. To survive I have learned to stand, teeth clenched and head high, no-nonsense in a bright shower of steadfast determination. This skill we must all learn to withstand the towering wave before us.

Thursday, October 7, 2010

Lovely Lymie Laments.

It's been quite awhile since I last posted an update and for this I apologize. I've been running myself ragged even though I really haven't felt that well at all. Since my last post quite a lot has happened. To mediate any confusion I shall list them in an organized fashion below.

Faint of Heart

Starting in July of this year I began to have issues with keeping fully conscious when out and about and over a short period of time this began to segue into fainting spells. During these events I would experience shortness of breath, heart palpitations and a feeling of extreme tiredness. My blood pressure was also skyrocketing more than it ever has. This only increased once I was taken off of one of my antibiotics and began to worry me. After passing out at two different stores and falling ass-backwards onto my kitchen floor while peering into the refrigerator I decided it was time to confront the issue.

I called my primary care doctor, who despite some Lyme patients objections to my continuing to follow her advice, is actually very understanding and supportive of my diagnosis and my decisions in terms of treatment. I was place on a 24 hour heart monitor and sent home. When the results came back nothing out of the ordinary was found. The only abnormality was that my heart seems to beat faster than it should on a regular basis. Following this I had a echocardiogram done and again the results were normal, at least from the point-of-view of the technician at that exact time. A cardiologist appointment was not too far ahead of my first two tests and the information I garnered was minimal to to say the least.

All that I managed to learn from him was a bit of the old, "It could be this or that, I don't know.", exactly what I didn't want to hear. The cardiologist hooked me up to a 30 day heart monitor and for most of the month September it was the bane of my life. Not only did I barely have any episodes (as I learned to keep away from certain triggers), but I also found it to be extremely uncomfortable. The doctor chose the worst time to hook me up to the monitor, as my results showed odd occurrences. It's a game of hide and seek. I guess eventually I will find out what is at the center of my cardiovascular chaos.

As time has gone on (with both input from medical professionals and plain person instinct) I have begun to wonder if what I may be suffering from is Lyme-induced Postural Orthostatic Tachycardia Syndrome (POTS). Only recently was I actually told that I have Tachycardia and now the pieces of the puzzle seem to fit together better- a clearer picture coming into view.

One good thing to note is that after being placed on the necessary medication my blood pressure has dropped into semi-normal range, a definite sigh of relief after watching it towering high for such an extended period of time.

LLMD Visit, # 3 & Follow-Up

My LLMD appointment this time around was much better than my previous two. I would imagine my doctor has gotten to know me a bit better since I first saw him and his workload that day seemed to be on the less hectic side (an issue that seems to determine his mood), creating a much more comfortable atmosphere. However, there were some concerning issues brought to my attention.

I was told that my liver enzymes are high and my doctor suggested ceasing antibiotic treatment temporarily. He is concerned about whether my liver is having too much trouble processing my meds and is also curious to see if this is a more chronic issue, as I have had results of this nature numerous times before. Considerations of this being a possible complication of one or more Lyme co-infections is very much at the front of the line right now in terms of logical causes for such an occurrence. I was told that during my treatment sabbatical a good route of cleansing/healing my liver was to take Milk Thistle, which I am in the process of doing.

The other issue that came to the surface was that my CD-57 rate has been increasingly dropping. As of July 2010 it was 75 (while in regular treatment), as of September is has dropped to 44, with inflammation becoming more and more noticeable at the physical level. Earlier this year I also noticed that my SED rate had been slowly making it's way downward as well. I have not had my SED rate checked in awhile though, so no new number is available. Upon returning to my primary care doctor in November I shall have them retest this.

I am also scheduled to retest my CD-57 levels in November along with testing for Babesia, Bartonella, Ehrlichiosis, Mycoplasma, Mycoplasma Pneumonia and Rocky Mountain Spotted Fever.

Out of all the co-infections possible I am quite certain that the most likely one to come back with a positive result is Babesia. My symptoms often match up quite easily with such a diagnosis, so it would no surprise me.

Currently

As of right now I am doing my best to work through the emotional fallout that has occurred since my "official" Lyme diagnosis earlier this year. I have found it quite hard dealing with the unknowns, especially when it comes to my future. On a daily basis it has also been hard to come to terms with not being able to do things the way I use to. Watching new symptoms pop up while older ones worsen. It can be quite disheartening to feel like your not at all in control of your body and the path it is taking.

Grieving for the loss of the person I once was is still very much a part of my life at this time and I don't see it subsiding anytime soon. In reality it is both my right and a necessary experience to contend with such feelings. Only someone in the same or a similar situation could possibly understand the devastating weight of such a complicated illness.

I don't even hope anymore to get 100% better, 50% or even 10% would make me happier than anyone could imagine. Longing for incredible lost adventures is just not important to me right now. Being able to stay awake all day, not feeling ill 24/7, not having a headache for five minutes, no wrenching pain and being able to play a videogame (a favorite hobby of mine that Lyme has crushed into non-existence) or read would be sufficient enough for me.

In terms of symptoms I can handle the physical stuff, no matter how bad it gets. I can deal with pain, I do every single day, some days worse than others, it's the neurological/psychiatric side of Lyme Disease that I simply can't stand nor have I ever found a way to sufficiently cope with it. As my cognitive difficulties have become more apparent and a psychiatric black hole has been continually eating away at my life, it's becoming harder to pretend that I'm fine, to pretend that everything is peachy on this side of the fence. It's not and I don't lie about it to myself or others anymore. This disease destroys you, taking your body, your mind and even your humanity away.

No one knows this experience until they've had to die inside and come back a little less of a person each time.