Existential Punk

IMPORTANT Lyme Disease Legislation Introduced

'Sen. Christopher Dodd (D-CT), a senior member of the Senate Health, Education, Labor and Pensions Committee and Chairman of its Subcommittee on Children and Families, along with Sen. Susan Collins (R-ME), have introduced the Lyme and Tick-Borne Disease Prevention, Education, and Research Act of 2009. The bill is co-sponsored by Sen. Jack Reed (D-RI), Sen. Joe Lieberman (ID-CT), Sen. Sheldon Whitehouse (D-RI), and Sen. Benjamin Cardin (D-MD).'

READ THE REST OF THE ARTICLE HERE.

PLEASE PHONE YOUR CONGRESS PEOPLE AND INSIST THAT THEY SUPPORT THIS VERY IMPORTANT LEGISLATION FOR ALL OF US LYME DISEASE & OTHER TICK-BORNE DISEASES SUFFERERS! LYME DISEASE IS AT EPIDEMIC PROPORTIONS, WORSE THAN HIV/AIDS! PLEASE TELL EVERYONE YOU KNOW ABOUT THIS LEGISLATION! THANK YOU! As someone who suffers daily with this HORRIBLE and GHASTLY disease that has wreaked havoc on my entire being, PLEASE help me and all the others who suffer mercilessly with this disease that is HELL ON EARTH!

New IDSA Guidelines Panel, Unbalanced & Biased: Congressman and Patient Groups Voice Concerns

California Lyme Disease Association (CALDA) reports this extremely frustrating and disappointing news on the fight for fair and balanced guidelines for treating Chronic Lyme Disease and other tick -borne diseases. i really hope President Obama will do something about the unfairness of the Infectious Disease Society of America (IDSA). i hate that these people are in bed with drug companies and insurance companies where it is ALL about money and their own interests rather that the health and well-being of those who are chronically ill, like moi!

Greenwich, CT, January 28, 2009-Patient groups voiced concern and disappointment about the new Infectious Diseases Society of America (IDSA) Lyme disease guidelines’ panel, which excludes physicians who treat patients with chronic Lyme disease. Last May, the Connecticut Attorney General found the IDSA Lyme disease treatment guidelines’ panel had conflicts of interest, engaged in exclusionary conduct, and suppressed scientific evidence. The investigation resulted in a settlement forcing the IDSA to reconstitute a balanced panel free of conflicts of interest under the oversight of an ombudsman to monitor conflicts of interest. No input from patients or treating physicians was permitted in selection.

“This situation is déja vu all over again,” said national Lyme Disease Association president Pat Smith about the newly created guidelines’ panel. “All Lyme disease treating physicians who applied for a seat were denied, based on having a “conflict” if they made over $10,000 treating Lyme disease. They have confused helping patients get better with ‘real’ competing conflicts such as interests in testing and vaccines, and relationships with insurers−a profile found in the original panel.  Physicians who treat understand what makes patients well.”

Attorney Lorraine Johnson of the California Lyme Disease Association points out “The problem is that guidelines conclusions generally reflect panel composition.  That is why it is critical that a panel be balanced and include different points of view.  Excluding the point of view of physicians who treat chronic Lyme disease makes no sense and biases this panel.”

READ the rest here.

Left My Heart in San Francisco!

Ok, so we were in Sacramento and San Francisco last week and i had very limited internet access as we were constantly busy. We accomplished quite a lot in our 10 day journey to the west coast. San Francisco is my FAVORITE USA city, with Los Angeles and NYC tied in second place! i always feel at home and truly myself whenever i am in California, whether it's in Sacramento, SF, or LA.

We have decided, due to the economic downturn, that we will move to Sacramento for a year, save money, and then move to SF. We researched and got rental price info so we can plot and plan our budget. We know the neighborhoods we will look in when we move back to CA this summer.

We stayed with our wonderful friends, James and Bo, who lent us one of their cars all week. It was great to spend quality time with them. Bo is half Thai and half Chinese. His mom lives right around the corner from them and made us AUTHENTIC Thai twice! It was AWESOME!

i was able to complete my confined water dive skills at Dolphin Scuba in Sacramento where Katryna used to work. i was proud i did quite well. i need to work in my open water dives a little more on my ascents and descents as a 9 foot pool does not give much room to accomplish these very well.

We got our hair done with Josey, our great Sacramento hairdresser who knows our hair very well. i also got a massage for Christmas with Katryna's facial/massage guy, Cisco, who gives one hell of a massage!

We went to SF early in the week and stayed at the really cool Hotel Tomo, which has an anime theme. Very modern, hip, reasonably priced and centrally located in Japan Town. We did the touristy things like ride the cable car, drove around the city to see what neighborhoods we would like to live in when we do eventually move to SF, and hung out in the Castro.

The main reason we went to SF was to see a Lyme Disease specialist. We had a good appointment and really liked the doctor. Yet, we walked away with mixed emotions. We both feel she is a very competent doctor and that fresh eyes to see me with is a refreshing thing and i feel confident about switching doctors and protocols. Then she told us something that was a bit of a wake up call and shocking - She can and will treat me but i may need to realize i may not get any better than where i am now currently. It was good to hear this but also hard as my VA doctor has hopes for a full recovery for me. The SF doctor said i have had it for a very long time and Lyme is very difficult to treat the longer it is in your body. She is still optomistic for me but weanted to be honest as well. So, we are still processing all of this.

The last weekend we went back to SF to meet up with our good friend, John, from LA. James and Bo drove up separately to meet us and we had a fantastic time together despite my being really sick. John, Katryna and i went to a BRAND NEW and recently opened museum in the Castro, which chronicles the history of the gay community, which includes momentous and horrific occassions in our community's history. The most compelling thing to me was seeing encased Harvey Milk's suit and shoes he was murdered in from 1978, especially in light of recently seeing the film, Milk, with Sean Penn, which i HIGHLY recommend.

So, i have left my heart in San Franciso, the beautiful city on the bay! Ahhh,until next time then!

Burn Out

Ok, so i am experiencing major burn out with my fucking treatment regimen for Lyme Disease and all my other bugs. i keep doing everything according to my doctor's instructions but am NOT seeing much improvement at all! i feel like a gerbil on a fucking treadmill who runs in circles, never to really get anywhere. The only real difference between me and the little gerbil is that he/she does not have the brain capacity to know that he/she is not going anywhere! i am so very discouraged and feel sicker than ever at this point in my life. My cognitive has worsened over the past couple of weeks where i am inversing letters when i type as if i am dyslexic. i have hit a wall, which is NOT the first time in my nearly 4 years since first being diagnosed with Lyme Disease and Babesiosis. The thing is, we are not cookie cutter beings, so genetic makeup and environmental conditions affect each of us differently. We are each unique like a snowflake! So, treatments vary with each individual person in length and effectiveness. We think this enemy invaded my body when i was a child, so i am in the chronic stage, which makes it more difficult and longer to treat. i am SO sick and tired of being sick and tired! i can't take much more of this. G-D, if you do indeed listen, then PLEASE hear my anguish and HELP ME!

Below is a photo of all my medicines, supplements, and homeopathics i am taking. You can see a small inkling as to why i am so burned out. i do this regimen EVERY FUCKING DAY! Every week Katryna is so kind to help me by filling my HUGE ASS pill box, which is not full at the moment. It's close to 100 pills i take everyday PLUS the liquid shots once a day. Some meds have to be taken on an empty stomach, while others have to be taken with food. i am not on antibiotics right now as my doctor has me come up to her office in Northern Virginia (Fairfax) for IV Infusions of minerals and homeopathics and IV chelation therapy for heavy metal toxicity, that usually lasts AT LEAST 3 hours. So, in addition to all of these meds/supplements, et al., i get stuck with an IV for 3 hours twice a week. (NOTE: For the past 2 months i have been on hiatus from the TWICE WEEKLY IV treatments. i will befin again in February.) So hopefully, i have been able to give you a small glimpse into my Lyme infested world. As i have said before, if it weren't for Katryna being in my life, i am not sure i'd have any motivation to still be here. i guess in some ways G-D is listening!

 

Brain Fog

i find daily that my cognitive abilities worsen. My word finding and short-term memory have noticeably changed for the worse as well as when i am typing i am continually inverting my letters as if i were dyslexic. It is very frustrating and demoralizing. i have a difficult time retaining what i read and doing things like my scuba diving class reading takes me like three or more hours where for the normal person two hours. When i am finished i am not even likely to be able to tell you what i just read! i feel like such a FREAK of nature! The BRAIN FOG is not physically painful to my brain but is painful to my soul, my energy, and my self-esteem.

Queen Of Pain

Sometimes i simply feel like the Queen of Pain. The Lyme and other toxins like to worm their way into every nook and cranny of my being, raging against me with disturbing pain. Pain makes it difficult to sleep and lack of sleep makes me very irritable, moody and depressed. i take pain/sleep meds like Neurontin and some homeopathics to help me relax and sleep. Often they do not work. Right now i have a sore throat from insomnia the past several nights. i just wish this illness would all go away and NEVER come back again. Will it ever go away? i hope so! i can totally empathize with people who are terminally ill and who have chronic pain that can't face living with it any longer. i am so fucking sick and tired of being sick and tired!

Existing With Lyme Disease.

To the average person who sees me i look like the epitome of health. i often walk with a smile and show people my good-natured side because that is who i am at the core of my being. Yet, this horrible and evil disease that has taken root inside my entire body, from my joints to my muscles, to my brain, to my immune system, to my skin, to my ears, and beyond. Living day in and day out with this unwelcome fiend is like existing in a dystopian society.

Everyday is a struggle to find the right words to say, something which used to be such a simple task that i took full advantage of until Lyme entered my life. My short term memory is negligible that often i forget where i put things and am constantly asking Katryna and others about things i cannot remember. i get brain fog where i have trouble concentrating, comprehending, and putting thoughts together. i ache terribly all over my body, from low grade headaches that sometimes lead to excruciating migraines, to constant joint pain in my fingers, wrists, elbows, knees, and ankles. Many times i get knee pain so bad i have difficulty walking up and down our stairs. Often times i have itching all over my body and deal with eczema on my feet that comes and goes. My energy levels are very low and i am extremely exhausted all of the time, yet i deal with bad insomnia many nights of the month. i get moody and irritable and lose my cool at the silliest things. i often find myself discouraged and depressed. My creativity is zapped. Most of my time is spent in bed.

If i did not have Katryna in my life, i'd probably give up. It is so very tiring to deal with this and i am not a whiner or complainer. i feel guilty and burdensome towards Katryna and like a waste of space on this earth. i am unable to work and really contribute to this world. i get bored out of mind at times. Katryna tells me i am not a burden and that she would rather be with me in all of the ups and downs of our lives than to be without me doing something different. i find comfort in her unconditional love and in her words yet i am human and still struggle with my inadequacies.

i HATE  & DESPISE you Lyme Disease. With you living uninvited inside my body making me very sick and tired of being sick and tired, i am simply EXISTING RATHER THAN LIVING! Oh G-D, PLEASE HEAR MY CRIES AND HELP ME. i am so very desperate for my body to be rid of the petri dish of bugs and toxins in my body. i am tired of being the home of an unwelcome enemy to my physical being and my soul!

i WANT TO LIVE RATHER THAN MERELY EXIST! Oh how my health is related to my existential angst. This cesspool of Lyme, Babesia, parasites, strep, heavy metal toxicity, and a slew of other things in my body are causing so much disruption to my life i want to spew them out but i am unable to do so at this time. My treatment is coming along but is very, very slow. i don't yet see light at the end of the tunnel and if i begin to, will it be the good light with a happy end in sight  or will it be a train coming to run me over completely eviscerating me? i really struggle with this dichotomy.

i am not writing all of this for a pity party or to whine. i am ranting because i am so frustrated and to also let people have a wee bit of understanding as to what i am going through with my health. People often know i have Lyme Disease but i don't think they fully understand what that means to have it and how it wreacks havoc on my life.

Lyme Disease Assciation Petition Text

HERE'S THE TEXT OF The Lyme Disease Association's Petition:

Lyme Disease Association, Inc.

PO Box 1438, Jackson, New Jersey 08527
888-366-6611 Lymeliter@aol.com 732-938-7215 (Fax)
LymeDiseaseAssociation.org

Petition

We, the undersigned, are gravely concerned by the new Infectious Disease Society’s (IDSA) guidelines on Lyme disease. These guidelines call for absolute reliance upon either the presentation of an Erythema migrans rash or positive serologic blood tests to diagnose Lyme disease and recommend severely limited courses of antibiotic treatment when either a rash or a positive test are present. They take the place of a longstanding policy of deference to the clinical discretion of the treating physician in both diagnosing and treating the disease. We find it most troubling that the new IDSA guidelines fail to explain the scientific justifications for their absolute reliance upon the rash and current blood testing to diagnose the disease in light of the numerous studies and medical opinions concluding that the rash is either not discovered by or present in many infected persons and that the serologic testing methods recommended by the IDSA are inherently unreliable because they do not even remotely approach a dispositive level of accuracy. Widespread adoption of these guidelines by practitioners, insurers, and government entities will, therefore, cause real and egregious harm to many patients by inhibiting physicians who otherwise would be free to clinically diagnose and treat this disease.

These guidelines fail to meaningfully address the needs of patients with chronic Lyme disease, who are now relegated to the pile of diseases with unknown etiology, like CFS and FMS, and who are provided with only symptomatic relief, while the underlying infectious disease is allow to progress unabated. Studies have shown that patients with chronic Lyme disease suffer a degree of debility equal to that of patients with congestive heart failure. Failure to address the underlying infectious disease etiology keeps these patients sick, which is inhumane and immoral. There are no chronic Lyme disease patient studies supporting symptomatic therapies, which presumably would be necessary for life at considerable cost to insurers and society. Moreover, the IDSA rejected out-of-hand the requests by patients and their treating physicians to participate in the guideline development process. No medical society should be able to dictate patient healthcare through exclusionary guidelines that ignore considerable scientific evidence and fail to meet the basic goal of medicine-to improve the quality of life of the patient.

This Is Inhumane!

PLEASE  READ THIS AND SIGN THE PETITION! THIS IS OF UTMOST IMPORTANCE to those of us suffering with Lyme Disease & other Tick-Borne illnesses!

From an email i received this evening:

New IDSA Guidelines Effectively Stopping Treatment for Lyme Patients: SIGN PETITION HERE
The new IDSA guidelines published in October by the Infectious Diseases Society of America (IDSA) are already causing patients to be denied treatment for chronic Lyme disease. The guidelines have recommended against any long term treatments, listing numerous specific antibiotic classes not to be given, listing alternative treatments and even supplements not to be offered to Lyme patients. Clinical discretion has been removed from treating physicians. We ask that you, your families, and friends across the country sign this petition immediately. Lyme treatment is at stake.

Petition Information: The petition on this website is for those 18 years and older to sign. Names and addresses will NOT appear on the internet but will be printed out with the petition when it is ready to be presented to the appropriate entity. LDA never sells names, nor shares them with marketers. The petition will be used in an effort to advance our cause at the appropriate time and will be kept private until that time. Remember, like many of you, LDA is all patients and families of patients ─ and all volunteer.

Philip Yancey on Faith . . .

Found another cool blog here. On the about page he quotes Philip Yancey on faith:

“Unavoidably and by instinct, I question and reevaluate my faith all the time.”

Wes then follows up the quote saying this:

"He and I share that affliction. I envy those to whom faith seems to come naturally, because it’s often more difficult for folks like me who are skeptical by nature

I’m not as certain about as many things as I used to be. That applies to doctrines, other religions, and my spiritual worldview in general. In fact, I am 100% (as in totally, completely, etc.) certain about very little in those realms and I am comfortable with that. I like being on that edge, and I think part of my purpose is to (carefully) be there. I think God can handle all of my doubts and curiosities. Despite all the unsettled questions, I believe in Christ with both mind and heart. I respect the many who don’t and I believe that I have much to learn from everyone, no matter their faith (or lack thereof).

I have little time for traditional churches, but hey, if you’re happy at one then more power to you"

i absolutely LOVE the honesty and authenticity expressed by both of these people. i find myself relating wholeheartedly with these sentiments as i have trudged through this life often referred to as a journey. The old cliche that the journey is much more important than the destination never rang more true for me than in my life over the past decade or so. i enjoy when i find things others write that i resonate with because living with Lyme Disease has impeded my cognitive abilities. So, when i struggle to find how to express my inner workings, it is a huge help when i find people like Yancey and Wes who are going through similar things as me. My Creator is so GOOD!