Friday, March 20, 2015

At a Crossroads.

Time has passed so quickly since my last entry on this blog and I am still facing immense challenges. I'm twenty-eight years old and staring upward at the largest set of obstacles I've ever had to fight against. A ticking time-bomb that has been laying dormant has finally taken a daring step forward.

Up until 2014 I had been riding a wave of treatment highs but unknowingly I began to creep up to an invisible wall. One that my Lyme physician had never informed me off. This was the line where "long-term" treatment became a liability and despite steadily improving, denying treatment was seen fit to apply.

I repeatedly brought my need for more aggressive treatment to the forefront of my discussions with said physician. I was always told "Eventually.", even while heading into a downward spiral.

For a year I was receiving excellent care with the help of a truly amazing nurse practitioner. Later I found out her views on Lyme were too open-minded for my doctor's office. She left and attempted to find a replacement of like-mind. Her choice ended up being an opinionless puppet.

My Lyme disease was previously treated improperly for eight months by the head physician before my amazing year with my original nurse practitioner. A weak medication better-suited for acute infection was prescribed and then Lyme was buried and forgotten.

Babesiosis was then treated for two years with steady improvement. Just as Bartonella treatment was beginning and Lyme treatment was on the horizon they pulled the plug. Not for any reason but to stop my treatment, regardless of my state of health. I was told my liver enzymes were too elevated, which turned out to be an outright lie. I was instructed to have absolutely normal test results or no treatment, a purposeful roadblock to prevent further treatment indefinitely.

I was also told I needed to get retested for Lyme to see if I was even still infected. It wasn't ever treated properly to begin with! How can something be cured when nothing was done to fix the problem in the first place?

This new sentiment was only further cemented into reality by my most recent interactions with my physician's office. The overseeing nurse projected an irate and condescending attitude. My case was minimized and openly referred to as "Not a big concern. If your so worried go see a specialist!". The phone conversation ended there and was my last.

A year of my life was spent being pulled on and off meds while I was unknowingly nosediving into treacherous territory. My puppet nurse practitioner knew this and ignored my warnings, blaming Post-Lyme or psychiatric illness. No brain scans or testing whatsoever were done. Just silence.

This has left me at a crossroads. During the past year my mental faculties have declined, starting off slowly. Vision distortion was the first red flag, despite having healthy eyes. A neurological source was suggested.

My mood became more frazzled and I broke down easily, displaying erratic behavior and poor social skills. Then in the early fall my memory and perception began to sharply decline.

Eight months later and I have begun to have trouble recognizing people close to me. I still know who they are but everything feels strange. Nothing feels familiar anymore and my adjustment time to change is greatly diminished. My ability to care for myself is also getting weaker. It's like my life is a painting and I am slowly watching threads of color fall away. 

Amid this my husband is also battling Lyme and struggling to get treatment.

We are at a crossroads and striving to overcome. All we can do is hope for a better tomorrow and embrace what victories we can, taking this journey day by day, because this life is all we have.

Until we see you again.....

Wednesday, March 12, 2014

In Honesty There Is Freedom.

2013 was a black hole in the midst of my battle-hound life. Not only was I stricken down, my pride lost, my mind and body broken, my dearest loved too was officially diagnosed with Lyme disease. For my husband 2013 was also a black hole. A story to be told in the coming days along with much more. 

If I had to summarize my experience in the simplest manner possible it would be to say I am not the person I was prior to last year. I am came back from the tribulations suffered with scars deeper than ever before. 

I am surrounded still by those dark days and think of them in fearful  flashes, overwhelmed. 

I am also at crossroads in my adulthood and feel lost. No career, no dedicated goals, just twenty years of Lyme disease that has wrought upon me, leaving behind a frightened shell.

Until 2013 I had been tested many times and got right back up. This time I haven't. Last year broke me, battered me into dust and my illness attempted to take its biggest trophy yet- my life.

I haven't ever been as close to dying as I was last year, Babesiosis nearly took it's pound of flesh! 

(I will explain this further in future posts.) 

I have since recovered physically, but not emotionally. 

How does one do that when whirling mad into a downward spiral?
How do you come back from the edge?

I am now left to pick up the pieces of my fragile mess. Years upon years spent trapped in a labyrinth of identity and loss have taken much, the remainder a cataclysm of dire hopes and immature grasps at the future. Childhood gone, youth retreating fast. 

I honestly never planned for a "What comes next?" resolution, so frightened there wouldn't be one. 

I am twenty-seven going on sixteen and utterly confused.

Dreams once again are seeming possible but with so many paths at my feet it's like trying to choose a story from a line of a thousand.

The phoenix rises once again but also implodes in unison. Hope and despair ever hellbent for the last dance.

Clamoring my way out of the smoke my voice is sentient once more but fighting still for a stable stone to perch upon.

Perseverance is always on the horizon!


Tuesday, June 4, 2013

We are Warriors!

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."

Sunday, December 2, 2012

I'm Still Alive!!

Hello out there to all of you in cyberspace, I figured it was about time I stopped by and let everyone know that I am still alive and flourishing, at least under the circumstances my health has put me under.

I've been very very busy for the past couple of months and have largely taken a sabbatical from Lyme activism for that period of time. With the holidays, getting married (did I mentioned I'm getting married on December 15th, 2012, well I am, after a nearly 6 year engagement) and Babesia treatment, I simply have not had the time to do much else.

I will be out of loop for at least another month, but no worries, I will be back to the frontlines starting in January, planning for Lyme Disease Awareness Month in May and for other events in the Lyme activism world.

Sometimes one has to disconnect from the world at large in order to recharge their battery. This is what I am currently doing. In terms of any updates I am now on my full dose of Mepron for Babesia and hope to go up to the full dosage of Zithromax starting next month.

My diet is still rocky, but much improved over previous times. I still have week or two week periods of doing well with my diet and then the same sliding off the wagon, but I would say less than a week or a little more than that of really bad "junk days". 

I largely try to avoid gluten, but do not always stick to that, however eating gluten free has transitioned to my new normal, eating outside of that is now my abnormal. My blood sugar has been wonky lately, likely due to periodic diet slides, but moreso I've noticed that it stays relatively normal, but the antibiotics and the stress they put on my body seem to cause it to elevate, so I have gone back to taking my glucose medication once a day just to be safe.

Something I can say now that I really haven't been able to for, well, years is that I feel like I am going in the right direction. I love the doctor that I am currently seeing. She is a no BS kind of gal and while she doesn't know everything there is to know about tick-borne diseases (who does for that matter), she is willing to learn whatever she can and treats you as a whole person and not just a patient.

I have also been going to therapy periodically and this led to me finally being able to see a psychiatrist, after nearly two years of trying to find one, and while I had my apprehensions before going to my first appointment, she actually turned out to be great! 

She was understanding and actually wants to talk with my LLMD and learn more about tick-borne infections. She even knows what PANDAS is (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections), a likely co-infection related issue that I will have to deal with at some point as I suffer from debilitating Obsessive Compulsive Disorder (OCD) with related anxiety issues. 

I was shocked that she was actually so open-minded. Shame on me for allowing previous run-ins with ignorant medical professionals to poison my idea of her before I even met her.

So finally, after two years, I have been taken off of one medication, Luvox, which was meant to help OCD, but doesn't, at least in my case, for anxiety or otherwise, with my ultimate goal overall being to get to a good enough state of health to be able to not be on any prescription medications. 

Once I am able to get my tick-borne diseases under control I plan on only taking buffer doses of herbal treatments to keep me in remission. I look forward to when I am able to say that this is my current protocol, as we all do!

One big step that I took lately, one that might seem trivial to many but definitely is not for me, is that I finally played a videogame that I have owned for nearly 3 years but have not been able to play and beat it just a few days ago! I pushed myself forward and kept going and actually managed to make a huge personal milestone that I have been trying to achieve for a long time. I look forward to being able to play videogames again and plan on doing everything I can to keep myself moving forward with my progress.

Well, that's all for now folks. I will update this blog with wedding photos when I am able and will continue to expand on the blog overall as well once things have slowed down for my family and I a little bit.

Talk soon,