Sunday, January 30, 2011

The Grieving Edge.

2010 was a difficult year, but despite a number of disheartening outcomes, the good outweighed the bad. I was surrounded by love and support all year, with my life in a much better place than it had been for a long time. The pain was made more bearable knowing I had people around me who care.

One of the biggest joys of 2010 was my fiancĂ©e James and I adopting our cat, Charlie.


He came into our lives at just the right time. I had started treatment not that long before his arrival and was having a very hard time dealing with the whole situation. It was just too much to handle in one sitting. There are so many unknowns that a Chronic Lyme Disease diagnosis carries along with it- the fear can be overpowering.

Adopting Charlie threw a spark into my waning fire and gave me one more thing to look forward to each day. Without James and Charlie I don't know what I would have done. Their love is what keeps me fighting.

My diagnosis didn't totally knock me down either. In fact it has been the catalyst to many great things, both large and small. It helped me to find my place in the Lyme community, amid a multitude of other patients and their families, as an activist and advocate. Creating this blog being on step in that journey. As previously mentioned in an earlier post I am also one of the main organizers of the Lyme awareness letter-writing campaign "Letters for Lyme", which is set to launch on January 28th, 2011. Following that I am also one of three founding members of "Hands for Holding Hearts", a outreach and support project for the Lyme community and their loved ones.

So much good has come out of such a bad situation. While I've had my attitude towards my mortality tested greatly, I have also learned to embrace life, love and laughter as much as possible. Everyday is an adventure now.

However, in the tradition of keeping balance, not everything this year was picture perfect.

One of these is the loss of the doctor who was treating me for Lyme. For the eight months that I continued to see him, nothing was done. I am not speaking specifically of healing progress either. I didn't ever expect to be "cured" within a few months, but did hope for proper treatment. Sadly this didn't ever happen. Throughout that entire time, we barely moved past the information covered in my first appointment. I was given inadequate antibiotic treatment and constantly rebuffed when I asked for something different. 

At appointments he would not speak and spent the entire time taking notes. I would then be handed a form for lab work. This went on to become the cookie-cutter template for every visit. He was not aware of many of the most common treatments for Lyme Disease, but wasn't against diagnosing complications of the disease.

However, when it came to treatment of these complications everything came to a halt and I was always told to see a specialist. After a number of appointments, with nothing to show for it, not even medication, I finally decided to cut him loose. You will notice that I no longer refer to my doctor as an LLMD, as he proved over time that he knows nothing about treating Lyme Disease. I'm embarrassed that I ever became his patient in the first place, but desperation made it an easy choice.

I now have to look further and further away from home to find adequate treatment. The story of so many Lyme patients. You're already struggling with this horrible disease and then are forced to fight even harder just to get treatment. The battle is never-ending.

The need to find an good LLMD has become my top priority, as I've been getting increasingly ill since earlier this fall. With pain and other symptoms becoming more and more unmanageable. 

There are times when I feel so overwhelmed by the entire situation, it's like Mount Everest is strapped on my back. Not only due you discover that Lyme Disease is quite difficult to treat upon first getting diagnosed, you also find that the complications of the disease, major medical issues that have spawned from the original infection/s can be even more hardy against treatment. 

It's a terrifying realization. One that I have been battling with for awhile now.

I'm still at the grieving edge of acceptance. Learning to cope, day by day.

There is beauty in the darkness however. Over the past few months I have been fighting back against this disease by doing as much as I can to spread awareness. I don't want to see another person have to go through what I and many others do on a daily basis. No one deserves to suffer like this.

Updates

In terms of how I've been doing, it's been a mixed bag. Car travel is still a major issue for me as I can no longer handle the stress it puts on my body. Shorter distances are even becoming problematic. I've also been experiencing increased stomach distress. This led to an ER visit towards the end of December, after which I was placed on pain medication.

These were only a temporary fix though and I am no longer taking them. This coming month I am scheduled for two stomach-related tests, so I will know more soon. Hopefully something can be done to relieve this chronic discomfort. I've also been losing weight recently, nearly 25 pounds in under 2 months. I am beginning to wonder if this is connected to what's going on in my gut.

Another issue that has sprouted up again is what I believe to be symptoms of POTS. When I originally was suffering from dizziness/fainting spells I was told by my cardiologist that it was likely a heat-related issue (it being summer and nearly a hundred out all the time), but with the weather being so cold, I find that hard to believe.

It seems now any stress outside of the house is inducing near-fainting episodes and horrible dizziness, making doing anything like grocery shopping or going out in general even harder to do. I also often experience this in the house as well. It's becoming very irritating because out of all the doctors I've seen, none of them seems to want to touch the issue of POTS, either because they don't know about it at all or just don't want to "go there". It's been like hitting one wall only to slam right into another.


That's all for now. Updates to follow as necessary and a new blog post every week (as long as I'm able).

Love to my Lymies,
Kenneth 

1 comment:

  1. I can so understand what you're going through Ken, and sorry that you are. The POTS thing is the worst. Well stomach issues aren't fun either, I am having both right now as I sit here. But I think the near fainting spells is what makes us so isolated. It makes it so hard to make plans or even try going anywhere. I hope you find relief soon my friend. Thank you for sharing you journey with us!

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