I haven't written on this blog for quite some time. I’m guilty of ignoring it most definitely! It’s been an interesting few months, a mixture of success and failure, improvement and decline.
I had a lot of projects going on concurrently and was simply not able to rally up the time or energy to continue to blog regularly. I'm not going to make any promises this time either, but I will try at the very least.
Things were quiet from early December in terms of Lyme activism (for me) until mid-January. During that time I got married to my life partner James and had a wonderful holiday (despite being quite sick in the days surrounding Christmas) and persevered as much as possible.
In mid-January plans began to roll out for a new Letters for Lyme campaign (currently active) and an educational Lyme event titled "Children and Lyme Disease: What Everyone Should Know!". Then at the end of February I was asked if I could take over the leader position of the Worldwide Lyme Disease Protest's Boston, MA event. My involvement in this event waxed and waned as time went on but in the end I managed to lead the way through the various early planning stages and thanks to a lovingly dedicated volunteer team in the final weeks of planning (when I was struggling the most) the event was a great success! I'm getting ahead of myself though.
"Children and Lyme Disease" at the end of April on the other hand was not very well attended and I will not deny it (what is the sense in lying): I was devastated. A fleeting thought of checking in my advocate time-card and wallowing in emotional dirt came to mind. I didn't however and I remain vigilant. This doesn't mean that I’m not emotional like any other human though, as I am just as sensitive as anyone else.
I did everything in my power to get a good attendance and despite that there were still factors outside of my control.
My advocacy and awareness organization is self-funded, so the only PR I have is what I generate myself. I was also just one person trying to woo the interest of multiple school districts and trying to get the attention of those uneducated about Lyme. I underestimated the difficulty in garnering attendance by those who are literally unaware of Lyme disease. I plan on working on my relationship with local school districts and with the community at large to help garner better attendance at future events.
My organization is in desperate need for funding but finding ways of doing that without being a non-profit is very taxing and at the current time we have not solution to the problem. However, we are working on it.
Following the upset of "Children and Lyme" I had the completely opposite experience at the Boston Rally for Lyme Awareness. It was truly uplifting and a day that I definitely needed after the depressive weight that had leeched onto me after my April event really began to dig in. We even made it onto the local news as part of a morning PSA spot that should run sometime this month. I look forward to the onset of planning for next year at the start of winter 2013/2014.
The real apex of my current situation is that I am caught in a balancing act of progress and cataclysm. I have been on Mepron and Azithromycin for over 8 months and have had two dose increases of Azithromycin during that time. I've done fairly well, a minimum of side effects, aside from the what might be expected. That however has changed.
Since my second dose upgrade and that in combo with Mepron I have seen myself feeling much worse and in that I have slipped deeply into sadness because I was getting used to certain improvements that are essentially being subjugated by herxing and the overall oppressiveness of the summer heat.
It is quite apparent that unless I move to the Arctic Circle I won’t be doing well other than when it’s not too warm. I simply cannot handle the heat and the minor (damn proud just to have that) but appreciated improvements I've had since last year I am forced to watch slip away.
My doctor even asked “Have you really had any improvements?” because I cannot answer what has improved. I just know that something has changed and that that didn't happen until I started treating Babesia. Without my doctor having went out of her way to help me, I don’t know where I would be now.
I am also still wading my way into the deep end of the pool, so-to-speak. With such minor improvements in the past year I feel that I am capable of taking on a stronger load of antibiotics, however this has temporarily been thwarted by the disgusting heaviness of the humidity and heat so common between June and September.
Much to my dislike I had one of my worst setbacks in a long time (years) during the past two weeks and really had to look at myself and analyze where my current path is leading me. At first I was frightened that I had lost of all of the months of progress I had made but after sitting down with my doctor and really discussing it, it appears that my "fall from grace" happened for a reason. In the same time period where my Azithromycin dose was upped and the summer heat began to set in I began to feel worse.
May into June was also one of the most stressful months in a long time for me. My father became ill and we found out he was suffering from kidney failure due to an enlarged prostate and bladder blockage. He was admitted to the hospital for a week where they discovered he has prostate cancer and bone cancer in a few ribs and one of his hips. From there he was in a rehab facility for nearly a week and a half. He is now home and doing well- doctors have high hopes for a good recovery and remission.
My husband has also been sick and there have been multiple situations where his health has flared in negative direction. I fear he may have Lyme.
My mother is also sick and we fear it may be Lyme as well, given I spent most of my time when I was young with her, it wouldn't be a jump in logic to think she may have become infected as well. Things have just been terrible!
However, in both my and my doctor's opinion it seems as if my setback was caused by a severe herxheimer reaction, which I am still dealing with to a lesser extent. Primarily on the neuropsychiatric side of things.
I had wanted to begin treating Bartonella in conjunction with Babesia but this will have to wait until my body is better able to handle it.
So for now Bartonella and the ever-present Lyme disease that remain vagrant tenants in my body will have to wait for their turn at the firing range.
June also marks a humongous milestone appointment for me. I have an appointment to see a new LLMD who was a previous ILADS president and is a well-known Lyme-Literate physician, researcher and advocate. This doctor also prescribes IV antibiotics, which my current doctor says she feels is the only way I am ever going to get over the hurdle of Lyme, and he takes my insurance leaving me with only a small co-pay.
My personal goal is to get better by the time I'm 30 and I really hope the current medical team I am working with can help me reach that goal.
There is so much in life I want to achieve and I feel like I've spent the better part of a decade just waiting.
As any chronically ill person can attest, being sick and having to watch life go by each day is a weight so heavy it feels like Mt. Everest is chained to your back.
I've been a Lyme advocate for nearly three years now and only have accepted my diagnosis and what comes with it for around a year. That however does not mean that I have accepted being sick! I would be fucking mindless if I was to tell anyone who wants to know if you ever truly accept being chronically ill that that is true.
It’s just not!
I will never accept the cards that have been dealt me, but I will fight against them! I funnel that sadness, stress and frustration into anger and that anger into activism. Those of us suffering from tick-borne diseases should be angry for what has and continues to be done to us. What is being perpetrated against our community is unjust and inhumane. Denying Lyme is a crime!
In this instance anger is a right not a feeling or overemotional reaction!
Until an "expert" can say they have looked closely at the completely accurate picture of what is going on and not just through rose-colored glasses with dollar signs lit up they have no right to place judgement on anyone, let alone the sick!
I’m completely fed up with this mess. It is high time that the sycophants and liars of the ivory tower IDSA pay their dues for the crimes they've committed. If I have to watch one more goddamn person suffer endlessly and needlessly I am simply going to collapse from exhaustion.
Lyme is literally everywhere and is destroying lives left and right! I can't even walk down the street without meeting someone who it has touched in some way, whether personally or through someone they know.
It's like an ever-repeating slide of horrors that I keep seeing over and over again in different lives and in different ways but it's all the same in the end- unnecessary!
It's sickening and must stop.
"We are warriors and we will struggle until our last breath.
We are not fighting for change, we are fighting for our lives."