Friday, January 29, 2010

Standing Up For Myself

I’ve never been very good at standing up for myself. I’m one of those people who is too nice and hasn’t learned to say no. My dog might disagree, but it is true.

It took me eight months to admit to myself that my two doctors were not going to strike up a relationship and start working “together” on my case. One of the doctors just wasn’t interested.

Why did it take me so long? Well, I like both doctors. I didn’t want to hurt anyone’s feelings. Ah, HELLO Ashley, this is about your health NOT your doctors feelings or egos!

Now I am stuck in an even bigger bind. One that effects me daily and it involves family, never easy.

My sister’s boyfriend, the father of her 11 month old daughter, walked out 3 days before Thanksgiving. My sister had to get a job ASAP!

Over the Christmas holiday our parents rushed to the rescue. Before they left my dad gave me the hard word, “You aren’t going to leave are you? Your sister needs you”.

I suddenly found myself a full time nanny. My sister is gone 10-12 hours a day! I am struggling. My very supportive family seem to have forgotten that I wasn’t just sleeping the days away because I had nothing better to do. I am sick.

A few days ago my sister complained about the grocery bill. She pays for the food. I watch the baby, do the shopping, take out the trash, and have dinner ready when she gets home.

I wanted to yell at her. This maybe the most money she has ever spent on groceries, but it is the cheapest childcare she is ever going to get.

I said nothing. No, that is a lie. I told her she could wait to pay me back for the groceries until next week.

The part of this mutually beneficial plan that was supposed to benefit me (moving closer to my doctor) never happened. That was the only reason I stayed here instead of moving to Tahoe where my husband is (4 hours away).

I feel like I am abandoning my sister and letting my dad down, but I can’t do this. I need to put me and my health first. I need to respect myself and my limits.

I need to establish boundaries and stand up for myself to my doctors, my family and my friends. I’ve never really done this before. This is a good skill I am developing, one that will benefit me for the rest of my life. It’s something I never would have learned if I hadn’t gotten sick.

If I want to get better, to be healthy again, it is more than just my Lyme ailments that need to be resolved.

Ashley van Tol

Tuesday, January 26, 2010

PICC Chick Week 3

Today, it's been three weeks since I had the PICC put in. I'll save the "is it working?" conversation for another post. But for those who can't wait, I'll just say that I have good and bad days, just like before, but I am seeing a few positive changes, like more brain power and no panic attacks so far.

This post is really just a few things about living with the PICC. There's not that much information out there, so I'll try to share as many details as I can remember.

First of all the tube-sock-gauze thing they give you to hold everything in place itches like hell. BUT it has the right amount of elasticity. I tried cutting up tube socks, but they were too tight and cut off my circulation. So I cut up some old pajamas (nice and soft) and had my mom make me these tubes that I wear UNDER the gauzy thing. See above. Someone kind on the Yahoo Lyme group told me there's a woman making PICC covers on etsy. Definitley need to order for spring/summer, if I still have this thing. So here's some show and tell...

The first picture above is the insertion site six days after. I was pretty wigged about the bruising. But even more wiggy was the pins and needles I kept feeling all around the site (we think it's damaged little nerves) and the pressure I was feeling in my chest and pain in my arm and neck. But it's all starting to get better with time and the help of my chiropractor.

Second picture is me doing my infusion. You can see some of the crazy bruising, which got worse after this photo. It takes about 12 minutes to do everything: sanitize, flush saline, Rocephin, and another saline flush.

This last picture is the site three weeks after (yesterday) and you can see that the bruising is getting better. My skin really didn't get along well with the Tagaderm (the clear patch you see above), so the pharmacy sent me SorbaView (not pictured), which is more breathable and kinder to your skin. It's not as waterproof, so you need to be more careful. Which brings me to my next point....

Another kind soul in the Yahoo Lyme group pointed me to Dry Pro for a water proof PICC cover. I ordered one and it has kept me dry in the shower (don't have the guts for the pool yet), but I have to say, I can't get it on by myself without hurting my tender skin or pulling on the Stat Lock (the thing that holds the PICC in place above). Soo...I'm sticking to the Saran Wrap/waterproof-first-aid-tape showering method during the week and am using the Dry Pro on the weekend when I have help.

More later....

Sunday, January 24, 2010

Ummm...Not So Rare: A Response to the Mercury News' recent Lyme article

This article came out Friday in the Mercury News: Learning about Lyme disease the hard way.

The short version is that Bart, the 69-year-old man featured in the article was diagnosed with Lou Gehrig's disease. His family was told he had two months to live, to take him home, and to call a hospice. Then his son remembered a tick bite he got six years ago near a percolation pond in Morgan Hill. They got another opinion. You can imagine the rest. The important thing for Bart is that right now he's on antibiotics and his family says he's improving.

I’m glad this article was published in a mainstream newspaper. We need this kind of awareness. Sadly, though Bart’s story is not unique, as the story implies. If you read Cure Unknown or see the film Under Our Skin you'll be inundated by similar stories of misdiagnosis.

You might have read a version of my story before. I suffered with undiagnosed Lyme for 20 years--was diagnosed with fibromyalgia, chronic pain syndrome, depression, Hashimotos, food allergies, and more. After my second child was born, all my systems crashed. Although I was diagnosed with Psoriatic Arthritis in 10/08, I had symptoms way beyond that and for a period believed it was actually MS. I was told to stop breastfeeding my five-month old baby so I could go on methotrexate--a chemo drug--indefinitely.

Not only did I find that prospect daunting, but the diagnosis didn't address all my symptoms (panic attacks, seizures, memory loss, reduced cognitive function, joint and muscle pain, eye infections, blurred vision, sore throat, jaw pain, digestive issues, chest pain, shortness of breath, tingling in my shoulders, hands, and feet, psoriasis and more) and caring for my two kids was nearly impossible. It sounds so crazy, you probably don't believe me. Fortunately, for me and my family's sake I found a doctor who DID believe me and dug deeper, did more tests, and I came out positive for Lyme and multiple co-infections (Bartonella, Babesia, Mycoplasma, and more).

It's been a year of oral antibiotics and I just recently had a PICC line put in for IV Rocephin. And I'm improving. As my primary care physician said (who originally was on board with the Psoriatic Arthritis diagnosis), I am a completely different person now than I was a year ago. She is amazed at my recovery and even asked for some names of LLMDs. If I had done the methotrexate, I would have only gotten sicker, since it's an immune suppressant and would have let the infection take an even stronger hold and then who knows what kind of diagnosis they would have come up with next.

I'm thankful beyond measure for my LLMD, my supportive family, and my own intuition and perseverance to find the right diagnosis and treatment. BUT, I continue to be pissed off at the IDSA, insurance companies, and corrupt or clueless doctors that continue to bleep with people's lives. The other four SpiroChicks have not the same, but eerily similar stories. And if you visit the Mercury News site and read the comments posted at the end of the article you'll read even more of the same stories about people suffering from Lyme.

No, Bart's story is not unique, and Lyme disease is NOT RARE. While I send my healing thoughts and prayers for Bart's recovery, I hope this story continues to ignite the fire in all of us Lymies to continue the fight for awareness, funding, and legislation to protect doctors and patients. And I really hope Patty Fisher does a more in-depth story about the prevalence and real risks of Lyme in the Bay Area.

Thursday, January 14, 2010

FAR Infrared

Far infrared
Far infrared

Some call it the ‘Light of Life’, others ‘Vital Rays’, NASA calls it ‘Bioenergetic Rays’; but, whatever nickname it is given far infrared has proven to be as important to human life as is oxygen, food, and water. (1)

Far infrared (FIR) is one range of the electromagnetic spectrum of waves emitted by the sun. Humans can not see this light, but know of its existence from the warmth they feel. To further explain how it is felt imagine yourself on a picnic during a hot summer day. It has become picnic protocol to set up the food under the shade of a tree. The air temperature does not change from the sun to the shade. So, why set up in the shade when the air temperature is the same in both locations? Because, the far infrared rays from the sun does raise the skin’s temperature when in direct contact. (1)

Unlike other saunas, the far infrared saunas’ heat penetrates at least 1 1/2 inches below the skin’s surface. This creates a deeper cleansing of the tissues. Far infrared heats the body directly. It does not use the air surrounding the person as a go between. The direct contact far infrared creates with the individual will result in a more intense sweat, while actually generating a lower temperature. This in turn allows more toxins to be eliminated than with other higher heated saunas. (2)

A 30 minute far infrared sauna is as advantageous to the cardiovascular system as is a 6 mile run. In fact, NASA has used far infrared for cardiac conditioning. With far infrared heat the blood vessels become dilated which helps lower blood pressure, increases blood circulation, boosts cellular metabolism, smoothes the walls of the blood carrying system and increases the production of both white blood cells and endorphins. The blood and its systems gain vigor which results in a strengthened immune system, quicker injury healing, normalized cholesterol, recovered energy and improved oxygen levels. (2)

Our tissues normally produce infrared energy for warmth and tissue repair. Tissue production of infrared energy is associated with a variety of healing responses. At times, the infrared energy in our tissues may require a boost to a higher level to ensure the fullest healing possible for tissue repair. (3)

Body tissues that need an infrared boost, selectively absorb infrared rays. The tissue will only use the infrared rays in areas were it is needed. After boosting a tissue’s infrared energy, the remaining rays pass onward harmlessly. This phenomenon is called “resonant absorption.” (3)

Research has shown that people that are chronically ill or with toxic levels from exposure to any toxin, pathogen, or nano advanced material have a lower base temperature than normal. Their natural far infrared energy source is being dimished by the condition. (3)

FIR will allow the body to attack any infectious material, foreign invader (chemicals), biofilms, nano microbic material and biomaterials. The melting point of many chemicals is greater than the body, but FIR creates temperatures that are RADIANT HEAT (cold heat) and will not burn the skin just push out foreign matter. FIR accelerates your internal regeneration of cells and the removal of superoxide molecules and toxins. (3)

There is a plethora of chemicals the body can not metabolize so when ingested these toxins tend to be stored in fat cells. A Chronic Toxic Overload is created when hundreds of chemicals dwell in the body. This condition causes dozens of debilitating illnesses. Excessive toxins cause the mechanism which creates enzymes to malfunction, resulting in nutritional shortages, which in turn can lead to hormone and brain imbalances. (2)

The heat from far infrared prevents the growth of bacteria and molds. Along with this effect, caused by the heat, the body will also activate its immune system anytime its core temperature rises above the norm. This stimulation of the immune system helps the body to more quickly rid itself of other illnesses. (2)
  • Infrared Sauna heat increases your blood circulation and stimulates the sweat glands, releasing built up toxins in the body. (5)
  • Daily sauna sweating can help detoxify your body as it rids itself of accumulated highly toxic metals (lead, mercury, nickel, and cadmium) as well as alcohol, nicotine, sulfuric acid, and other organic and inorganic compounds. (5)
  • infrared heaters will raise your core body temperature, inducing an artificial fever. Fever is the body’s natural mechanism to strengthen and accelerate the immune response, as seen in the case of infection. (5)
  • This enhanced immune system, combined with improved elimination of toxins and wastes via intense sweating, increases your overall health and resistance to disease. (5)


Originally posted on LYMENAIDE