I had a visit with my doctor last week to review my recent test results and assess my progress. I feel I teeny bit better and have a little bit more energy on more days then I used to which is really nice. That could be because I'm getting better, but I suspect that it is because the lil buggers have adapted to the current course of meds I'm taking. My CD-57 test score went from a 60 to 69. An upward trend, but not enough to get excited yet because everyone has daily fluxuations and it won't be considered a truely higher score until it is either 15 points higher or consistently higher with each retest. I'll be getting another one on 8 weeks to recheck.
The plan for now is to take a 10 day break from all meds and detox, then start a new pair of antibiotics that will traget the Lyme more then the co-infections, an enzyme that will help to break the barrier around the little colonies they form, and a sleeping aid to insure that I hit stage 4 sleep way more often. I have mixed feelings about the sleeping aid, but really would love to have refreshing sleep and feel rested in fewer then 12 hours a night, and oh how nice it would be to be rid of the insomnia. The new course of meds should produce another herx reaction so i may be feeling worse for a little while, but that will mean it's working!
Monday, December 14, 2009
Tuesday, December 1, 2009
The debt ball is rolling!
Inspired by a total lack of money, Suzie Orman's book Young Broke and Fabulous, and the Dave Ramsey system that my friends Michael and Hosanna have used to get completely out of debt(yes totally except for their house!) my husband and I have began paying off our debt. It hasn't been easy living on only his salary, my disability check and having ton of medical bills while trying to pay off debt but we've got the ball rolling.
Earlier this year we began by paying off our new bed before the crazy interest kicked in. The next step was to get take a good look at every debt we owed and keep the list handy to remind us how much we want to eliminate it. Then we tightened a few screws and began budgeting for things that can vary grossly like food and entertainment. Doing that and insuring that all things get paid on time has helped us to be able to pay off my car today!
Now the ball is really rolling. From now on each month we'll take the money were were already paying and put it toward our next debt plus what we normally pay for that bill. Our next account should be paid off in two months. Then we'll take that money and use it to pay off the next bill starting with the smallest amount and moving up our list. We're also going to use our tax return this year to pay off debt. If we get a lot like last year we'll also buy a new couch cause we really need it and can not wait until all of our debt is paid before buying it, but only if our return is over a certain amount. With all the medical bills I'm claiming this year is should be big. So anyway, I just wanted to share our success and maybe inspire you to do them same with your debt.
Earlier this year we began by paying off our new bed before the crazy interest kicked in. The next step was to get take a good look at every debt we owed and keep the list handy to remind us how much we want to eliminate it. Then we tightened a few screws and began budgeting for things that can vary grossly like food and entertainment. Doing that and insuring that all things get paid on time has helped us to be able to pay off my car today!
Now the ball is really rolling. From now on each month we'll take the money were were already paying and put it toward our next debt plus what we normally pay for that bill. Our next account should be paid off in two months. Then we'll take that money and use it to pay off the next bill starting with the smallest amount and moving up our list. We're also going to use our tax return this year to pay off debt. If we get a lot like last year we'll also buy a new couch cause we really need it and can not wait until all of our debt is paid before buying it, but only if our return is over a certain amount. With all the medical bills I'm claiming this year is should be big. So anyway, I just wanted to share our success and maybe inspire you to do them same with your debt.
Wednesday, November 11, 2009
WORKSHOP
Join Janine and I for our Earring Workshop Sat. Nov. 21st in Santa Cruz. In this 90 minute workshop you'll have fun learning a new skill and leave with 2 finished pairs of earrings to keep for yourself or give as holiday gifts. $35 includes all supplies and 2 talented instructors! Tell your friends and see you there.
Spaces are limited call to reserve your spot today!
Thursday, October 29, 2009
Random Lyme Update
People are always asking me how the Lyme thing is going (which is really nice) so I though I'd share with everyone. All in all, things are pretty much the same. I do think I'm getting a bit more energy, but just a bit. However, I am way more sore! Both of my arms are so sore that it hurts really bad to lift the blankets off when I turn over or get out of bed. It hurts to lift my arms over my head to take off a shirt and I can barely put any weight on them. My hips are also really stiff and sore and I'm getting so skinny I hardly recognize myself. I'm not exactly sure what is making me get so small. Maybe it's the wheat and dairy free diet or my muscles getting smaller or maybe it's just a weird side effect of the Lyme. I don't think I've been this small since college or maybe even high school. It's weird. But mostly I'm just in pretty bad pain all day long. I'm taking several things to help, but they only do so much. The best thing is really hot baths. So, I think I'll go and soak right now.
Thanks for asking!
Thanks for asking!
Wednesday, October 21, 2009
CD-57
Sorry for the delay. I did get my test results and had another appointment with my Lyme Dr. on Oct. 5th. She reviewed everything with me and said that I'm doing pretty well compared to other patients she has. She said my increase in pain is due to the meds working and killing off the lil buggers and that I have lots of dead things floating around in my body so I have to up my detox program. She suggested I drink tons of water, take a homeopathic liquid detox med, soak in HOT baths with Epsom salt, hot tub/sauna for at least 20 minutes, take anti-inflammatories, and use those detox foot pads. I increased my baths, am taking some of my supplements again to help with inflammation (zyflamend is awesome stuff), Advil twice a day, arnica rub downs nightly and arnica caps daily, detox kit daily, and I have started using those detox foot patch things, so gross what comes out of your feet. I think I'm going to need these by the case!
As far as test results go, she said that my white blood cell count is low suggesting a co-infection of Erlichia. She said it'd difficult to distinguish from Lyme because it's symptoms are nearly identical and it rarely occurs without Lyme. That doesn't change anything in my treatment, just gives more info. The CD-57 test also came back. The score for "normal" ranges form 60-360, a score in the 50s or below is concerning, scores in the teens mean you've got a very long uphill fight, single digits mean you might not recover or survive (I have a friend who recovered from single digit scores!!!! Our Dr. told her several times she might not make it and should begin making plans. So scary.) My score was 60! This is a good place to start. However, it doesn't mean very much until we have a few more scores to compare it to. Scores can vary on a person from day to day and even hour to hour, so we need to get several scores with an upward trend for months to know that we are on the right track. If nothing changes in the score, then we switch meds to attack it a different way. She said that her goal is to get me into the 250s and stay there for 3 months then she can have me back off on treatment and see how I do. We're hopping for at least a 10 point improvement with my next test that I'll get at the end of November(I think). Darn Memory. Wish me luck!
As far as test results go, she said that my white blood cell count is low suggesting a co-infection of Erlichia. She said it'd difficult to distinguish from Lyme because it's symptoms are nearly identical and it rarely occurs without Lyme. That doesn't change anything in my treatment, just gives more info. The CD-57 test also came back. The score for "normal" ranges form 60-360, a score in the 50s or below is concerning, scores in the teens mean you've got a very long uphill fight, single digits mean you might not recover or survive (I have a friend who recovered from single digit scores!!!! Our Dr. told her several times she might not make it and should begin making plans. So scary.) My score was 60! This is a good place to start. However, it doesn't mean very much until we have a few more scores to compare it to. Scores can vary on a person from day to day and even hour to hour, so we need to get several scores with an upward trend for months to know that we are on the right track. If nothing changes in the score, then we switch meds to attack it a different way. She said that her goal is to get me into the 250s and stay there for 3 months then she can have me back off on treatment and see how I do. We're hopping for at least a 10 point improvement with my next test that I'll get at the end of November(I think). Darn Memory. Wish me luck!
Wednesday, October 14, 2009
Help Needed
This weekend I'm doing an arts and crafts show at Kennolyn in Aptos and my partner Janine can't be there with me. I really need someone who can stop by to relieve me just long enough to scarf down some lunch and visit the little girls room. It's going to be a great event that most of my friends would likely enjoy visiting and there will be plenty of fun things for the lil ones to do. Please if you can help on either Sat. 16th or Sun. 17th let me know. I'll owe you big time.
Thursday, October 8, 2009
Under Our Skin
Under Our Skin is an amazing fil about the intimate details of Lyme disease. It goes in depth to explain who has it how they got it, what happens when you have it, how doctors respond, and the ugly side of insurance companies and bogus policies that get in the way of sick people being treated. I was shocked and amazed at the images and the information I found out. I had no idea about so many aspects of the disease. Seeing it was an important step in understanding what is going on inside my body and why the doctors couldn't figure it out. Turns out they didn't want to. I don't want to give too much of the film away, but it would mean a lot if you would please go and watch it.
Anyway, this film is important to see because it'll help you understand what I'm going through, explain why we have to pay for all my doctors visits, tests, and treatment out of pocket, and going to see it will show that people care about this important health issue and that something needs to be done now to change the system.
Check out the link below for a list of screenings and please go see it!! There are screenings in Oregon and Texas today!!! You can also see the trailer and clips from the film on You Tube.
UNDER OUR SKIN SCREENINGS
http://www.underourskin.com/screenings.html
PS. Donations in the form of money, driving, housework, yard work, walking buddy, prepared meals, massage, conversation, help with jewelry sales, etc. are greatly appreciated. No offer is too small, it all helps me a lot.
Anyway, this film is important to see because it'll help you understand what I'm going through, explain why we have to pay for all my doctors visits, tests, and treatment out of pocket, and going to see it will show that people care about this important health issue and that something needs to be done now to change the system.
Check out the link below for a list of screenings and please go see it!! There are screenings in Oregon and Texas today!!! You can also see the trailer and clips from the film on You Tube.
UNDER OUR SKIN SCREENINGS
http://www.underourskin.com/screenings.html
PS. Donations in the form of money, driving, housework, yard work, walking buddy, prepared meals, massage, conversation, help with jewelry sales, etc. are greatly appreciated. No offer is too small, it all helps me a lot.
Tuesday, October 6, 2009
Send me your coupons
Once a month I receive craft store coupons in the junk mail. If you come across coupons for Beverly's, Michael's, or other such places please save 'em for me. Thanks so much!
Tuesday, September 29, 2009
Welcome Back Monarchs Day
I'll be heading to Natural Bridges to welcome back the monarchs, enjoy the wonderful santa cruz fall weather, meet up with freinds, sing songs, admire the butterflies, picnic on the grass, visit the beach, play with kiddies, and generally geek out on butterflies, and maybe win another raffle prize (we got free camping last time we went). I would love it if you could join me. Monarch inspired attire is encouraged!!
Welcome Back Monarchs Day at Natural Bridges
WELCOME BACK MONARCHS DAY
Sunday, October 11,
10:00AM to 4:00PM
at
NATURAL BRIDGES STATE BEACH
Join us for this joyful, monarch-filled day and welcome the monarchs back to this park, their over-wintering habitat. Participate in numerous activities including arts & crafts, active games for kids, music by the 5M’s (the mostly mediocre musical monarch mariposas), hand-cranked ‘monarch’ ice cream (pumpkin), information and action booths as well as more about monarch butterflies and how-top’s for a butterfly garden. The park is located at the end of West Cliff Drive at the north end of Santa Cruz. For more information, please call (831)423-4609.
Sunday, September 27, 2009
Test Results
I just had another test done last week. This test measures how strong my immune system is for fighting off this Lyme Disease. I should be getting the score early this coming week. The number I get will help to determine how long my treatment should take. Right now my doctor is estimating somewhere between 6-24 months. I've got an appointment with her in Watsonville on Monday Oct. 6 at 2:00. At this appointment we should be able to narrow it down even more. I'm really hoping that she tells me it will be a year or less. I'm ready to be done with all of this and get back to my life. I was hoping that Emiliano would be able to attend the appointment with me, but he had to move his soccer practice from Tuesday afternoons to Mondays. I'm still looking for someone who can go with me and take notes so I don't forget what she tells me.
Saturday, September 26, 2009
Hiking in the Redwoods
I just got back from a hike at Nissene Marks State Park. It was really hot here today so we decided to go find out how much hiking I could do in the shade of the giant redwood trees. I haven't been on a hike in a REALLY long time. It was so great to get out there and comune with nature. I really miss being on the trail.
I had a great time hiking, well it was really more like a walk in the woods. I think I hiked faster with 20 1st graders than I did today. We got in a few miles before my hip and knee were hurting too much. I finally just sat down and Yawno went for a run back to the car and drove back to pick me up on the side of the road in the park. It was a good thing he did run too because when he got to our car we were getting a parking ticket from the ranger. We had paid the fees. I was hapy to pay given the dismal state of the parks system. But, our envelope didn't have a stub to put in the window so the ranger though we hadn't paid. He talked to her and got her to look through the box of fees for the one with our lisence number on it. We still have a ticket, but she said we can contest it and will likely win.
I'm tired now, but at least it's in a really good way. I'm hoping that I'll be able to get out and about more often and for longer so if you want to go for a walk or hike please take me with you I'd love to go.
Wednesday, September 23, 2009
My Favorite Websites
I thought I'd share a bit about some of my current favorite websites.
www.meetup.com
Meet up is a social networking site that people use to create interest groups that actually meet up in real life to do things they have as similar interests. I signed up and found meet up groups in the Santa Cruz area that go hiking several times a week, a walking meet up, one that is for crafty types to inspire and encourage you to finish your projects, one for sustainable living and homesteading, and my favorite-the women's clothing exchange which has a monthly event where you can trade your old clothes for someone else's. There are groups for nearly everything you can think of. Check it out and I bet you'll make new real life friends that like to do that geeky thing you love to do.
www.etsy.com
Etsy is an online marketpalce where you can buy and sell all things handmade. It is unbelieveable the ammount of beautiful creations that people make and share through this site. I have seen awesome pottery with cool insects and geeky scientific info., mobiles made from fused recycled plastic bags, a wide array of beautiful handbags, cupcakes and vegan cookies, jewelry making tutorials, paintings, and photography just to name a few.
www.freecycle.org
This is a site siilar to the classifieds on Craigslist, but it's better because you can only offer, take, or request items for FREE!!! I have used this site to get us a freestanding hammoch, a push mower, a new iron, and 4 bags of beads. We have used it to get rid of an old area rug and some yard sale left overs. It's set up to send you notices to your email as often as you like and only tells you about the stuff in your area. Check it out to see what you can find or get rid of.
www.facebook.com
I always said I would never get into these kinds of things. I always preached that hanging out with your friends in real life is way better. It is, but we can't always hang out with everyone we know and facebook helps me stay connected with people whom I otherwise wouldn't see very often. I like seeing pictures and vides of what my friends and family are up to. I also like that you can share invites, blogs, links, videos, movie reviews, game scores, quiz results, etc. It's been great for getting me in touch with some people I have lost along the way and it is scarly accurate at reccomending people you should be facebook friends with. How does it do that? If you haven't joined the rest of us in facebook land yet, please do, we'd love to see you.
www.meetup.com
Meet up is a social networking site that people use to create interest groups that actually meet up in real life to do things they have as similar interests. I signed up and found meet up groups in the Santa Cruz area that go hiking several times a week, a walking meet up, one that is for crafty types to inspire and encourage you to finish your projects, one for sustainable living and homesteading, and my favorite-the women's clothing exchange which has a monthly event where you can trade your old clothes for someone else's. There are groups for nearly everything you can think of. Check it out and I bet you'll make new real life friends that like to do that geeky thing you love to do.
www.etsy.com
Etsy is an online marketpalce where you can buy and sell all things handmade. It is unbelieveable the ammount of beautiful creations that people make and share through this site. I have seen awesome pottery with cool insects and geeky scientific info., mobiles made from fused recycled plastic bags, a wide array of beautiful handbags, cupcakes and vegan cookies, jewelry making tutorials, paintings, and photography just to name a few.
www.freecycle.org
This is a site siilar to the classifieds on Craigslist, but it's better because you can only offer, take, or request items for FREE!!! I have used this site to get us a freestanding hammoch, a push mower, a new iron, and 4 bags of beads. We have used it to get rid of an old area rug and some yard sale left overs. It's set up to send you notices to your email as often as you like and only tells you about the stuff in your area. Check it out to see what you can find or get rid of.
www.facebook.com
I always said I would never get into these kinds of things. I always preached that hanging out with your friends in real life is way better. It is, but we can't always hang out with everyone we know and facebook helps me stay connected with people whom I otherwise wouldn't see very often. I like seeing pictures and vides of what my friends and family are up to. I also like that you can share invites, blogs, links, videos, movie reviews, game scores, quiz results, etc. It's been great for getting me in touch with some people I have lost along the way and it is scarly accurate at reccomending people you should be facebook friends with. How does it do that? If you haven't joined the rest of us in facebook land yet, please do, we'd love to see you.
Sunday, August 30, 2009
Bartonella Infection
I've been doing some research on bartonella infection and it's symptoms to learn more about it and better understand what is going on inside my body. I was surprised to read that it is fairly common and often causes more symptoms the Lyme. It can be passed to humans from cats, fleas, ticks, and maybe even dust mites. It can cause many psychological symptoms and neurological problems not to mention many other symptoms. I'm guessing that more of my symptoms are coming from this infection then from the Lyme.
Some people have noticed that I am not quite myself and that I seem to be more emotional and my personality has changed. I think this could be the cause and I am really looking forward to killing the little buggers and feeling like myself again. I miss me.
Here is an excerpt I cut and pasted from the Internet.
Bartonella bacteria enter all organs and cause the following sample illnesses:
•All Psychiatric disorders
•Fatigue
•Numbness or Loss of Sensation
•Dizziness
•Headaches,
•Tremors
•Irritability
•Agitation
•Aggression
•Impulsivity
•Oxygen Deprivation
•Panic Attacks
•Fainting
•Muscle Spasms and/or Weakness
•Joint Pain
•Upper and Lower G.I. Tract Disorders
•Kidney, Bladder, and Urogenital Disorders
•Sleep Disorders
•Memory Problems
•Drowsiness
•Lumps in the Skin
•Dozens of Types of Rashes
•Polyps in or on Major Organs
•Eye Disorders, e.g., Blurred Vision, Depth Perception, and Retinal Damage
•But Some Patients Have No Clear Symptoms
Some people have noticed that I am not quite myself and that I seem to be more emotional and my personality has changed. I think this could be the cause and I am really looking forward to killing the little buggers and feeling like myself again. I miss me.
Here is an excerpt I cut and pasted from the Internet.
Bartonella bacteria enter all organs and cause the following sample illnesses:
•All Psychiatric disorders
•Fatigue
•Numbness or Loss of Sensation
•Dizziness
•Headaches,
•Tremors
•Irritability
•Agitation
•Aggression
•Impulsivity
•Oxygen Deprivation
•Panic Attacks
•Fainting
•Muscle Spasms and/or Weakness
•Joint Pain
•Upper and Lower G.I. Tract Disorders
•Kidney, Bladder, and Urogenital Disorders
•Sleep Disorders
•Memory Problems
•Drowsiness
•Lumps in the Skin
•Dozens of Types of Rashes
•Polyps in or on Major Organs
•Eye Disorders, e.g., Blurred Vision, Depth Perception, and Retinal Damage
•But Some Patients Have No Clear Symptoms
Thursday, August 27, 2009
Dorcctor's Visit
I went to see Dr. T today in Watsonville. She said that I am doing well so far. My tests from last visit came back negative expcept that I have some adrenal fatigue and a co-infection. The adrenal fatigue is likely what is causing me to have memory problems, mood swings, muscle aches, etc. I'm going to be taking a suppement from my naturopath to help support my adrenal functioning. The co-infection is called Bartonella. It's the bacteria that causes cat-scratch fever among other things. We don't know if I have the exact strain that causes that, but she did say I have been infected for a while. She put me on an new antibiotic called Levaquin. This is in addition to the Doxycycline that I am already on. I'll keep doing things to detox and hopefully my body will handly this new drug well. I'll keep you all updated as things progress.
Thanks to Jim who drove me and acted as my patient advocate. Big thnaks to everyone who helped me raise the funds to pay for this round of appointments and meds. I am blessed with great friends.
Thanks to Jim who drove me and acted as my patient advocate. Big thnaks to everyone who helped me raise the funds to pay for this round of appointments and meds. I am blessed with great friends.
Saturday, August 22, 2009
Herxing Sucks
I started feeling worse last weekend and have't improved. I'm begining to experience many of the very same unplesant symptoms I had earlier this year when I was taking 3 course of antibiotics for pnuemonia. This is an excerpt from the internet explaining what I'm going through right now. Let me just say that it hurts, bad. If this is going to be anything like last time I have a feeling the worst is yet to come.
Within a few days (usually one to three) after beginning antibiotic therapy, it is common for many patients with Lyme to suddenly begin experiencing a worsening of their symptoms. In some cases, this experience can be extremely uncomfortable. Additionally, it can also be mistaken as an allergic reaction to the antibiotic drugs that have been prescribed. In actuality, this reaction is a positive sign that the antibiotics are working and is known as the Jarish-Herxheimer reaction. Commonly this name is abbreviated to Herxheimer, or simply “Herx.”
A Herxheimer occurs because the Bb bacteria, under attack from the antibiotics, start to break up and die, releasing toxins and other harmful debris as they do so. This, in turn, causes the body’s immune system to temporarily go into overdrive in order to cope with the abrupt deluge of toxins and debris.
A Herxheimer can last from a few days to two weeks or more, depending on how disseminated the Bb bacteria is in the body. The greater the dissemination, generally the longer a Herxheimer will last. During this time, in addition to the temporary worsening of previous Lyme symptoms, one may also experience chills, fevers, headache, nausea, and even a drop in blood pressure levels. Don’t be alarmed by this, and don’t stop taking the antibiotics that have been prescribed. Do, however, contact your physician to let him know what you are experiencing, so that he can determine if your symptoms are due to Herxheimer and rule out a true allergic response to the drugs. Two “natural” ways to reduce the symptoms of Herxheimers are hydration (2 to 3 quarts of quality water a day) and the bioflavonoid quercitin (500–1500 mg per day).
Another important consideration to be aware of is that major Herxes generally occur during the Bb bacteria’s growth phase (which phase is also known as a “Lyme cycle”). This is also the time during the Bb bacteria’s life cycle that antibiotics are most effective in eradicating them, since they are most vulnerable during this phase. Lyme’s growth phase occurs approximately every three to four weeks (up to six weeks maximum), and therefore, intermittent symptom flare-ups or Herxes usually also will occur at those same intervals. These cyclerelated Herxes continue to occur over time until a sufficient quantity of Bb has been killed off. In most cases, symptoms of subsequent Herxheimer reactions are shorter and less severe than the initial one, indicating that treatment is progressing successfully. If your reactions continue to be of the same severity and duration, this may be a sign that there is dysregulation of your immune system that needs to be addressed or that the antibiotic regimen may need adjustment. Also, there are times when untreated co-infections need immediate attention, after which time Lyme can be successfully addressed. Whatever the cause, it is important to alert your physician if your Herxheimer symptoms continue unabated.
Within a few days (usually one to three) after beginning antibiotic therapy, it is common for many patients with Lyme to suddenly begin experiencing a worsening of their symptoms. In some cases, this experience can be extremely uncomfortable. Additionally, it can also be mistaken as an allergic reaction to the antibiotic drugs that have been prescribed. In actuality, this reaction is a positive sign that the antibiotics are working and is known as the Jarish-Herxheimer reaction. Commonly this name is abbreviated to Herxheimer, or simply “Herx.”
A Herxheimer occurs because the Bb bacteria, under attack from the antibiotics, start to break up and die, releasing toxins and other harmful debris as they do so. This, in turn, causes the body’s immune system to temporarily go into overdrive in order to cope with the abrupt deluge of toxins and debris.
A Herxheimer can last from a few days to two weeks or more, depending on how disseminated the Bb bacteria is in the body. The greater the dissemination, generally the longer a Herxheimer will last. During this time, in addition to the temporary worsening of previous Lyme symptoms, one may also experience chills, fevers, headache, nausea, and even a drop in blood pressure levels. Don’t be alarmed by this, and don’t stop taking the antibiotics that have been prescribed. Do, however, contact your physician to let him know what you are experiencing, so that he can determine if your symptoms are due to Herxheimer and rule out a true allergic response to the drugs. Two “natural” ways to reduce the symptoms of Herxheimers are hydration (2 to 3 quarts of quality water a day) and the bioflavonoid quercitin (500–1500 mg per day).
Another important consideration to be aware of is that major Herxes generally occur during the Bb bacteria’s growth phase (which phase is also known as a “Lyme cycle”). This is also the time during the Bb bacteria’s life cycle that antibiotics are most effective in eradicating them, since they are most vulnerable during this phase. Lyme’s growth phase occurs approximately every three to four weeks (up to six weeks maximum), and therefore, intermittent symptom flare-ups or Herxes usually also will occur at those same intervals. These cyclerelated Herxes continue to occur over time until a sufficient quantity of Bb has been killed off. In most cases, symptoms of subsequent Herxheimer reactions are shorter and less severe than the initial one, indicating that treatment is progressing successfully. If your reactions continue to be of the same severity and duration, this may be a sign that there is dysregulation of your immune system that needs to be addressed or that the antibiotic regimen may need adjustment. Also, there are times when untreated co-infections need immediate attention, after which time Lyme can be successfully addressed. Whatever the cause, it is important to alert your physician if your Herxheimer symptoms continue unabated.
Friday, August 21, 2009
Dos Mariposas
I was looking out the window this afternoon gazing at my tomato plants and I noticed a butterfly on a leaf. I couldn't tell what kind of butterfly it was and the more I looked the more I was sure there was something else on the leaf as well. So, I decided to sneek out to take a peek and I found two butterflies. They were doing it! I was able to run back inside, grab the camera and snap a few photos. After a few minutes they flew away in an embrace. It was pretty awesome. My guess right now is that this could be a Gulf Fritillary, Agraulis vanillae (Linnaeus, 1758). Note the large size of it's head and only four legs. They have six like all other insects, but the front ones are so small that they are rendered useless. Weird. For more info on this interesting butterfly check out http://www.butterfliesandmoths.org/species?l=1664
I sure like these butterflies better then the gophers in my garden.
I sure like these butterflies better then the gophers in my garden.
Tuesday, August 18, 2009
You look good
WARNING: rambling and venting both occur in this post
People keep telling me that I look good. I'm glad because I feel like crap and at least I know I still look good. Also I can control the way I look, unlike how I feel. So I try to at least look good. On the other hand, because I'm not ovbiously broken or sick looking and not bed ridden I think people don't understand that I am sick and I don't feel good.
Lyme is not like the flu, you can walk around all day and do things and no one would even know if you didn't tell them. However, I feel like I've had the flu for a year or more. I'm tired all the time and I sleep a lot. Sleeping doesn't even seem to help. And, if I'm really tired then I get insomnia and don't fall asleep until 1am or later. I have woken up with a headache every day for 3 days in a row. My teeth ach for no reason. I feel like there is coton or spider webs in my brain. Everything is foggy and unclear. I can't process new information very quickly. Sometimes reading is hard because when my brain is coudy my vision often also gets blury. I can't remember things. I mean I really cant remember. I often ask several times a day what day it is. Sometimes the only reason I know is because I have 3 dialy pill reminders that are labeled with the days of the week. I sometimes can't remember what I did the previous day or why I walked into a room. I walk around the house in circles trying to get one thing done but everytime I go into a new room I forget why it was I went in there in the first place. I'm sorry if I have forgotten your birthday, anniversary, party, child's birthday, special event, what we talked about last, why I called, or what I was trying to say. It was not on purpose or out of neglect, just that I simply can't remeber.
One of the things I have a hard time remembering is how to get places. I can imagine in my mind where I am and where I want to go, but the path in between is fuzzy. It's hard to give directions to my house and when I stop to think about it for I while I can feel the other person thinking, don't you know how to get to your own house? I get the same thing when I can't remember my phone number or....... (forgot already).
This is part of the reason I don't drive anymore. I end up somewhere other then where I wanted to go. I can't decide when I come to an intersection which way I need to go and next thing I know I'm not where I thought I was going. I'm also having a hard time judging the speed and distance of other cars. I'm now that old lady that waits until the road is completly clear in both directions before I creep into the road. I get vey anxious about even the thought of driving and my heart starts beating faster. Driving also hurts my arms. It used to be just my left arm after longer trips, but now it's both arms and sometimes my hands cramp up or go numb. My knees and hips also get achy and crampy when I sit in the car for a while. It has even bcome uncomfortable for me to go on longer rides with Emiliano driving. I'm always asking to pull over so I can get out and stretch or go to the bathroom or get something else to eat. Please understand that if I can't attend your event it is probably because I either don't feel good or can't get there. If you haven't seen me in a while those are likely the two reasons why. Please understand that I still want to be friends with everyone, I still want to hang out and do things and go places. I just can't do all the things I used to, I usually need a ride, and I have to go slower then normal. But I'm still interested so please don't stop asking or inviting me. I really appreciate it.
My arms hurt so much and are so weak it hurts me to hold babies, or groceries (can't go grocery shopping alone), or a few books, or hangers with clothing, or a pan of water. So please forgive me if it seems like I'm not helping out or chipping in, or if I don't want to hold your kid. I would love to be doing all those things and more, but it simply is not comfortable for me.
I'm sorry to vent like this, but I have been feling like crap for a few days now and I feel like very few people understand me and what I'm going through. Oh yeah, I'm not depressed. I am actually really happy inside, but it's hard to express it the way I used to because that takes a lot of energy. But, please believe me when I tell you I'm happy and not depressed. Bummed out sometimes for sure, but it always passes and the giggles return. I am a bit chemically unballanced because the Lyme bacteria release a toxins into your body when they die and that has efects on my mood and processing and such. But I think anyone who has been sick for 3 years would have a few imballances every now and then.
Thank you to everyone who has called, asked how am am, offered to help, actually helped, donated time, items, money, bought jewelry, given love and support. I can't believe all the wonderful things people are doing for me. I really appreciate it a lot. I feel like this disease has brogught me closer to some people and that part about it I really like. Please continue to call, email, stop by, help out, check in, etc. I'm going to need it even more when Emiliano goes back to school. Please also ask him how he is doing as well. He spends so much of his free time taking care of me and I know it isn't easy for him all the time. I'm so lucky to have him and wonderful friends around to support me.
Thanks for listening.
People keep telling me that I look good. I'm glad because I feel like crap and at least I know I still look good. Also I can control the way I look, unlike how I feel. So I try to at least look good. On the other hand, because I'm not ovbiously broken or sick looking and not bed ridden I think people don't understand that I am sick and I don't feel good.
Lyme is not like the flu, you can walk around all day and do things and no one would even know if you didn't tell them. However, I feel like I've had the flu for a year or more. I'm tired all the time and I sleep a lot. Sleeping doesn't even seem to help. And, if I'm really tired then I get insomnia and don't fall asleep until 1am or later. I have woken up with a headache every day for 3 days in a row. My teeth ach for no reason. I feel like there is coton or spider webs in my brain. Everything is foggy and unclear. I can't process new information very quickly. Sometimes reading is hard because when my brain is coudy my vision often also gets blury. I can't remember things. I mean I really cant remember. I often ask several times a day what day it is. Sometimes the only reason I know is because I have 3 dialy pill reminders that are labeled with the days of the week. I sometimes can't remember what I did the previous day or why I walked into a room. I walk around the house in circles trying to get one thing done but everytime I go into a new room I forget why it was I went in there in the first place. I'm sorry if I have forgotten your birthday, anniversary, party, child's birthday, special event, what we talked about last, why I called, or what I was trying to say. It was not on purpose or out of neglect, just that I simply can't remeber.
One of the things I have a hard time remembering is how to get places. I can imagine in my mind where I am and where I want to go, but the path in between is fuzzy. It's hard to give directions to my house and when I stop to think about it for I while I can feel the other person thinking, don't you know how to get to your own house? I get the same thing when I can't remember my phone number or....... (forgot already).
This is part of the reason I don't drive anymore. I end up somewhere other then where I wanted to go. I can't decide when I come to an intersection which way I need to go and next thing I know I'm not where I thought I was going. I'm also having a hard time judging the speed and distance of other cars. I'm now that old lady that waits until the road is completly clear in both directions before I creep into the road. I get vey anxious about even the thought of driving and my heart starts beating faster. Driving also hurts my arms. It used to be just my left arm after longer trips, but now it's both arms and sometimes my hands cramp up or go numb. My knees and hips also get achy and crampy when I sit in the car for a while. It has even bcome uncomfortable for me to go on longer rides with Emiliano driving. I'm always asking to pull over so I can get out and stretch or go to the bathroom or get something else to eat. Please understand that if I can't attend your event it is probably because I either don't feel good or can't get there. If you haven't seen me in a while those are likely the two reasons why. Please understand that I still want to be friends with everyone, I still want to hang out and do things and go places. I just can't do all the things I used to, I usually need a ride, and I have to go slower then normal. But I'm still interested so please don't stop asking or inviting me. I really appreciate it.
My arms hurt so much and are so weak it hurts me to hold babies, or groceries (can't go grocery shopping alone), or a few books, or hangers with clothing, or a pan of water. So please forgive me if it seems like I'm not helping out or chipping in, or if I don't want to hold your kid. I would love to be doing all those things and more, but it simply is not comfortable for me.
I'm sorry to vent like this, but I have been feling like crap for a few days now and I feel like very few people understand me and what I'm going through. Oh yeah, I'm not depressed. I am actually really happy inside, but it's hard to express it the way I used to because that takes a lot of energy. But, please believe me when I tell you I'm happy and not depressed. Bummed out sometimes for sure, but it always passes and the giggles return. I am a bit chemically unballanced because the Lyme bacteria release a toxins into your body when they die and that has efects on my mood and processing and such. But I think anyone who has been sick for 3 years would have a few imballances every now and then.
Thank you to everyone who has called, asked how am am, offered to help, actually helped, donated time, items, money, bought jewelry, given love and support. I can't believe all the wonderful things people are doing for me. I really appreciate it a lot. I feel like this disease has brogught me closer to some people and that part about it I really like. Please continue to call, email, stop by, help out, check in, etc. I'm going to need it even more when Emiliano goes back to school. Please also ask him how he is doing as well. He spends so much of his free time taking care of me and I know it isn't easy for him all the time. I'm so lucky to have him and wonderful friends around to support me.
Thanks for listening.
Monday, August 10, 2009
A visit with Ambrosia and Gwen
Last Wednesday Ambrosia drove over the hill for a visit. She brought Gwen with her and I got to play with her all by myself while Ambrosia took a shower. Gwen had fun playing with all my little stuffed animals and chasing the soccer ball around the house. She also liked the pieces from connect four and seemed to know the difference between the red and black ones. I would ask her to show me a certain color and she got it right every time. Maybe it was just luck, but I was impressed. She is just so cute and I can tell she really likes visiting with me.
Ambrosia is such a great friend and while she was here she took me grocery shopping at whole paycheck as my friend Michael calls it. Emiliano and I were both so thankful for the ride and the help. Gwen chewed through a baggie of bulk food and made a mess, but she was still super cute.
Ambrosia also brought a bunch of stuff for my yard sale. The baby items she brought were a big hit and our yard sale was super successful. My goal was to make $300 and we have made $316! Thanks everyone who donated to the cause. The money is going pay for my next doctor visit at the end of the month.
Ambrosia is such a great friend and while she was here she took me grocery shopping at whole paycheck as my friend Michael calls it. Emiliano and I were both so thankful for the ride and the help. Gwen chewed through a baggie of bulk food and made a mess, but she was still super cute.
Ambrosia also brought a bunch of stuff for my yard sale. The baby items she brought were a big hit and our yard sale was super successful. My goal was to make $300 and we have made $316! Thanks everyone who donated to the cause. The money is going pay for my next doctor visit at the end of the month.
Sunday, August 9, 2009
Inch by inch, row by row.....
This year's garden has been a fun adventure. Emiliano has been doing most of the work this year because I've been tired. He's done an awesome job.
Right now we've got bunches of basil, leafy lettuces, tons of tomatoes, super big squash, and so much more. It's so great to go outside and pick something to eat. There have even been times that every veggie on our dinner plates came from our back yard.
As with any garden there have also been surprises. We had soooo many volunteer plants this year it was crazy. We've got volunteer flowers blooming here and there. We have a forest of tomatoes from last year's seeds. We have so many tomato plants we probably could have gone with out planting any seedlings. The great part is that now, we've got about 7 or more varieties of tomatoes growing back there. The other day when Ambrosia was here I discovered we have a yellow variety of tomato growing. Whoo hoo! We also have volunteer summer squash, ron de nice squash, and zucchini.
There have also been a few challenges. The first was removing the hundreds of tomato seedlings so that we would have space for other things to grow. Then our peas died and the squash plants began wilting along with the sugar snap peas. That was when we realized we have a gopher. Emiliano smashed down the holes and drenched the area with water to discourage the critter and encourage the plants to send out new roots. Now our cucumbers are giving out and I think it's because of aphids. Guess we need some ladybugs.
Even so, it had been so wonderful to sit back there and enjoy the flowers and strawberries. I love our garden!
Right now we've got bunches of basil, leafy lettuces, tons of tomatoes, super big squash, and so much more. It's so great to go outside and pick something to eat. There have even been times that every veggie on our dinner plates came from our back yard.
As with any garden there have also been surprises. We had soooo many volunteer plants this year it was crazy. We've got volunteer flowers blooming here and there. We have a forest of tomatoes from last year's seeds. We have so many tomato plants we probably could have gone with out planting any seedlings. The great part is that now, we've got about 7 or more varieties of tomatoes growing back there. The other day when Ambrosia was here I discovered we have a yellow variety of tomato growing. Whoo hoo! We also have volunteer summer squash, ron de nice squash, and zucchini.
There have also been a few challenges. The first was removing the hundreds of tomato seedlings so that we would have space for other things to grow. Then our peas died and the squash plants began wilting along with the sugar snap peas. That was when we realized we have a gopher. Emiliano smashed down the holes and drenched the area with water to discourage the critter and encourage the plants to send out new roots. Now our cucumbers are giving out and I think it's because of aphids. Guess we need some ladybugs.
Even so, it had been so wonderful to sit back there and enjoy the flowers and strawberries. I love our garden!
Friday, July 31, 2009
I've got Lyme Disease
Yesterday I went to see a new doctor, Dr. Talty in Watsonville. I really like her. After reviewing my health history and my lab results form Igenex (the place in Palo Alto that has through tests for Lyme ) she says that I most certainly have Lyme. She said that because of what I have already been doing with my diet and supplements that I've got a head start on getting well.
She put me on doxycycline for a month, sent me home with seratonin, a prescription for melatonin, a detox kit, and some lab orders. She said that I should be doing dextox baths and foot patches as often as possible. She also said that I would probably need 18months - 2 years to get completely better. That is when I can start trying to get pregnant.
The medicines I am on should be working pretty soon, but I'll likely feel much worse before I really get better. There is this called a herx reaction, which happens when you kill of the bacteria and the release toxins into your body. Te toxins make you feel worse for a while until you can get rid of them with detox. Most likely the road will be up and down.
She wants me to do more testing for the other bacterial infections that ticks can spread. My naturopath has already told me that I have many of them and she has been right about things so far. Dr.Talty just needs to confirm and look at exact levels before we I can use the meds to get rid of them. I also need to get tested for viruses because you have to get rid of the viruses and the co infections before you can really rid the Lyme bacteria from your body. I also need to do hormone testing because my hormones for coping, stress, and mental function are out of wack.
We have already spent several hundred dollars if not a thousand on tests and treatment for me. Now I need to have another round of testing and it will costs us over $2000! The really messed up thing is that the large majority of Lyme doctors do not take insurance because. This is because the CDC does not recognize late stage or long term Lyme. If they work with insurance companies they often get a lot of pressure because the treatments that have actually worked are not in the guidelines for treating Lyme. This is because a group of people who were being paid off by insurance companies wrote the guidelines to state that late stage or chronic lyme doesn't exist and not to give more them 3 weeks of treatment with ineffective antibiotics. Super lame!!! So because we have an HMO we can try to submit claims, but they likely won't go through. After I get the results back form these new tests Dr. Talty will tweak my treatment plan and it may have to include very expensive antibiotics. She said as much as $1100 a bottle! Given that I haven't been able to work since mid March this is going to very hard for us to pay for.
I'm glad to finally know what is going on and begin my treatment process. I'm really tired all them time and I don't have much endurance for things. One of the hardest parts is that I also not mentally there as much as before. I'm really forgetful, and have a harder time paying attention and absorbing new information. I have been spending a lot of my time reading, making jewelry, chatting with friends, and watching the garden grow. Emiliano is doing the best he can with all of this. I think he's getting tired from taking care of me for so long and sad that I can't get up and go play with him. We are both going to need a lot of support through this next phase. There are many things friends and family can do to help us out such as driving me to run errands, help with housework or cooking, financial contributions, come over and hang out, or just call and say hi. If you want to know more about the small things you can do(they'll fell big to us) to help us please call or email, we'd both really appreciate it.
She put me on doxycycline for a month, sent me home with seratonin, a prescription for melatonin, a detox kit, and some lab orders. She said that I should be doing dextox baths and foot patches as often as possible. She also said that I would probably need 18months - 2 years to get completely better. That is when I can start trying to get pregnant.
The medicines I am on should be working pretty soon, but I'll likely feel much worse before I really get better. There is this called a herx reaction, which happens when you kill of the bacteria and the release toxins into your body. Te toxins make you feel worse for a while until you can get rid of them with detox. Most likely the road will be up and down.
She wants me to do more testing for the other bacterial infections that ticks can spread. My naturopath has already told me that I have many of them and she has been right about things so far. Dr.Talty just needs to confirm and look at exact levels before we I can use the meds to get rid of them. I also need to get tested for viruses because you have to get rid of the viruses and the co infections before you can really rid the Lyme bacteria from your body. I also need to do hormone testing because my hormones for coping, stress, and mental function are out of wack.
We have already spent several hundred dollars if not a thousand on tests and treatment for me. Now I need to have another round of testing and it will costs us over $2000! The really messed up thing is that the large majority of Lyme doctors do not take insurance because. This is because the CDC does not recognize late stage or long term Lyme. If they work with insurance companies they often get a lot of pressure because the treatments that have actually worked are not in the guidelines for treating Lyme. This is because a group of people who were being paid off by insurance companies wrote the guidelines to state that late stage or chronic lyme doesn't exist and not to give more them 3 weeks of treatment with ineffective antibiotics. Super lame!!! So because we have an HMO we can try to submit claims, but they likely won't go through. After I get the results back form these new tests Dr. Talty will tweak my treatment plan and it may have to include very expensive antibiotics. She said as much as $1100 a bottle! Given that I haven't been able to work since mid March this is going to very hard for us to pay for.
I'm glad to finally know what is going on and begin my treatment process. I'm really tired all them time and I don't have much endurance for things. One of the hardest parts is that I also not mentally there as much as before. I'm really forgetful, and have a harder time paying attention and absorbing new information. I have been spending a lot of my time reading, making jewelry, chatting with friends, and watching the garden grow. Emiliano is doing the best he can with all of this. I think he's getting tired from taking care of me for so long and sad that I can't get up and go play with him. We are both going to need a lot of support through this next phase. There are many things friends and family can do to help us out such as driving me to run errands, help with housework or cooking, financial contributions, come over and hang out, or just call and say hi. If you want to know more about the small things you can do(they'll fell big to us) to help us please call or email, we'd both really appreciate it.
Wednesday, July 22, 2009
Lyme Update
Since I last posted an update about my health a few things have happened. Emiliano and I have done a lot of research about Lyme disease, diagnosis, and treatment. We are reading two books, speaking with friends and family, and even went to a Lyme support group last week. I have received the test results from the Igenex lab in Palo Alto. They were indeterminate, neither positive or negative. That is frustrating. Now I have an appointment on July 30th to see a Lyme literate doctor in Watsonville, Dr. Talty. She was recommended to me by the lyme group members. Hopefully she will be able to confirm the diagnosis given by my naturopath and get me on a comprehensive treatment plan. I will let you know what happens after that visit. Right now I am just taking things one day and one step at a time and beginning to incorporate new ideas from these books into my life in hopes of beginning to feel better.
Current symptoms:
Migrating pain, forgetfulness, mood swings, overwhelmed feeling, processing difficulties, digestive issues, sleep disturbances, blurry vision, headaches, trouble driving, I can't even remember all of my symptoms. In general I just feel run down and weak like you might if you were getting sick. Sometimes I have better days and others I just feel sluggish and out of it. Even through all of this I remain really happy on the inside and I am so looking forward to getting my life back.
Emiliano has been great in supporting me through this and has done so many things for me that I can't thank him enough. Thank you also to everyone who has called or emailed to check in with me. It is so great to have friends and family support during this rough time. I'm not getting out and about as much because I don't feel good about driving. Please know you are all welcome to stop by and say hi anytime. I'm home a lot and will likely be here.
Current symptoms:
Migrating pain, forgetfulness, mood swings, overwhelmed feeling, processing difficulties, digestive issues, sleep disturbances, blurry vision, headaches, trouble driving, I can't even remember all of my symptoms. In general I just feel run down and weak like you might if you were getting sick. Sometimes I have better days and others I just feel sluggish and out of it. Even through all of this I remain really happy on the inside and I am so looking forward to getting my life back.
Emiliano has been great in supporting me through this and has done so many things for me that I can't thank him enough. Thank you also to everyone who has called or emailed to check in with me. It is so great to have friends and family support during this rough time. I'm not getting out and about as much because I don't feel good about driving. Please know you are all welcome to stop by and say hi anytime. I'm home a lot and will likely be here.
Trip to Tahoe
Earlier this month Emiliano and I went to Tahoe for a week. His parents rented a wonderful house for friends and family to enjoy. Thanks Roberta and Jim!
We stayed near Carnelian Bay about 4 blocks away from the lake. We did lots of fun stuff while we were there. Emiliano and I played miniature golf. Jim, Roberta, 2 of her friends, and I played apples to apples which we all enjoyed and got many great laughs from. I spent a long and beautiful day at Sand Bar beach while Emiliano went mountain biking up a huge piece of granite and Jim and Roberta went kayaking. I couldn't believe how beautiful it was. The water was a beautiful blue, the sand light colored and the mountains and forest just steps away. It was unreal. I went for a walk while at the beach and I think I saw my first marmot. Do they live there? It looked like a huge, fat squirrel with out a tail. I also went to a beautiful beach (pine something) with Emiliano and we got into the freezing cold water. He went for a short swim, but it was way to cold for me. I saw super cute baby duckies swimming behind their mamma duck. I spent a few hours shopping with Roberta and she took me to a fun candy store with fancy chocolates. I had a tequila dark chocolate that was sweatened with agave nectar and topped off with salt. Roberta bought the National Park edition of monoploy and I won! I also had the best and most expensive pedicure of my life. It was great! I did a lot of hot tubbing and tv watching, relaxing, and ate great food. Emiliano says I took recreation to a whole new level.
The house was great, the beds were so cozy, the food was awesome, we had cable to watch the tour, the mountain air was fresh, and the company was fantastic. We had a wonderful time and were sad to leave.
We stayed near Carnelian Bay about 4 blocks away from the lake. We did lots of fun stuff while we were there. Emiliano and I played miniature golf. Jim, Roberta, 2 of her friends, and I played apples to apples which we all enjoyed and got many great laughs from. I spent a long and beautiful day at Sand Bar beach while Emiliano went mountain biking up a huge piece of granite and Jim and Roberta went kayaking. I couldn't believe how beautiful it was. The water was a beautiful blue, the sand light colored and the mountains and forest just steps away. It was unreal. I went for a walk while at the beach and I think I saw my first marmot. Do they live there? It looked like a huge, fat squirrel with out a tail. I also went to a beautiful beach (pine something) with Emiliano and we got into the freezing cold water. He went for a short swim, but it was way to cold for me. I saw super cute baby duckies swimming behind their mamma duck. I spent a few hours shopping with Roberta and she took me to a fun candy store with fancy chocolates. I had a tequila dark chocolate that was sweatened with agave nectar and topped off with salt. Roberta bought the National Park edition of monoploy and I won! I also had the best and most expensive pedicure of my life. It was great! I did a lot of hot tubbing and tv watching, relaxing, and ate great food. Emiliano says I took recreation to a whole new level.
The house was great, the beds were so cozy, the food was awesome, we had cable to watch the tour, the mountain air was fresh, and the company was fantastic. We had a wonderful time and were sad to leave.
Monday, June 29, 2009
Moonlight Classic
Last Night Emiliano and I drove to Stocton to see the Moonlight Classic, a drum and bule core extravaganza. When we left Santa Cruz around 3:30 the fog was burning off in our section of town. When we got to the other side of 17 we saw the tep rise to 100. 100 in Los Gatos! As we continued or journey north east we saw temps as high as 109! When we arrived in Stockton it was 108. Good thing there was shade in the stadium.
The performances this year were great. The blue devils were awesome as usual. The mandarins were cool. And a group I'm not sure I've seen before, the blue coats, had a great drum section. There were some weird things this year like air mattresses being used as props. Whatever! In general it seemed like the level of creative performance form the groups was down. I didn't notice as many fun and flashy things from the bands, but the color gards were great! If you've never seen a drum core performance and check them out on you tube and then go see one. It's a show unlike any other.
The performances this year were great. The blue devils were awesome as usual. The mandarins were cool. And a group I'm not sure I've seen before, the blue coats, had a great drum section. There were some weird things this year like air mattresses being used as props. Whatever! In general it seemed like the level of creative performance form the groups was down. I didn't notice as many fun and flashy things from the bands, but the color gards were great! If you've never seen a drum core performance and check them out on you tube and then go see one. It's a show unlike any other.
Sunday, June 28, 2009
LYME
Over the past few months I have been experiencing more symptoms. Aside form the daily pain, I am now having neurological symptoms. I am forgetting things, having a hard time remebering, and normal activities are getting challenging. I keep bumping into things, my typing, spelling, and writing are getting sloppy. I'm tired every day even though I sleep about 10 hours or more every night. This is not fun.
Thanks to a very generous donation form Natalie (squirrel), I was able to go and have another visit with Treya Palmer, a Naturopath in Sonoma County. She told me a year ago that she thought I could be getting Lyme and this time she said that I have it. This would explain my symptoms and why they are getting worse.
I suspect I got it at Camp Cazadero in May of '06 while I was working as a naturalist. Shortly after that I started getting arm and neck pains, and getting really tired. I thought I was just getting burnt out from my job, but I haven't felt not tired since then.
Treya has me on a whole bunch of supplements some of which are antibiotic and antibacterial. I'm also getting acupuncture from our friend Karen. Emiliano and I have been working hard to get me tested and treated through our insurance, but it is a slow process. We've dropped off my blood at a lab in Palo Alto and hopefully they will be able to provide us with a positive test result so that I can get on antibiotics and get rid of this yucky thing.
There is a documentary out right now about Lyme and the medical and political climate surrounding it. We have seen it and it is very interesting. It likely won't be in theaters for long so please go out and see it asap if it is playing near you. It's important with this film to get large numbers of viewers in the theaters so that the associated industries know this is an important issue. Check it out at www.underourskin.com
Saturday, June 27, 2009
Big Sur
Our 1 year wedding anniversary was on June 14th. We went out to dinner at the Crow's Nest which is where we first met in person. We had a yummy dinner and Emiliano even wore a shirt with buttons, just for me.
Our real celebration was treating ourselves to a vacation in Big Sur. June 17th -19th we went camping at Pfeiffer Big Sur State Park campground. Emiliano had never been there so I took him on a tour of all the best places. We stopped many times along the way to check out the view from the road. He loved it!
Then after setting up camp we went for a walk in the nearby Big Sur River. The Water was so clear and refreshing. Later we made a yummy dinner over the fire and slept with a thousand stars above us.
The next morning, we made breakfast and went for a drive south to look for the famous sand dollar beach. We made numerous stops along the way to enjoy the scenery. One of the stops was at Julia Pfeifer Beach. We walked out a quarter mile to a lookout where you can see a waterfall that spills off the cliffs onto the sandy beach. That was so beautiful. By the time we finally got to Sand Dollar I was really tired. We had lunch in the back of the truck and walked out to get a good view of the beach and check to see if it would be surfable. It was foggy and windy and I was getting progressively slower so we headed back.
We decided instead to spend the afternoon at Pfeiffer Beach because it was clear and sunny and warm. The beach was much closer and I was able to rest on the beach while Emiliano went and explored sand dunes (he found an awesome knife in the sand) , rocks, and tried to collect grains of the purple sand for me. My brain is getting so foggy I didn't even realize that I had been to this beach before until I saw my feet in purple sand and then I remembered building sand castles with Hosanna and the crew.
For dinner we decided to treat ourselves to very overpriced burgers and fries and Nepenthe. Seriously, $7.75 for fries? You've got to be kidding. But the view is amazing. Even so, I recommend that you treat yourself if you have never been there. It's a one of a kind place. After that it was back to camp for showers and hanging out by the fire.
The next morning we packed up and headed into town looking for brunch and decided to indulge at the River Inn restaurant. We had amazing food out side on the patio. Then Emiliano ordered a morning beer and we headed down to the river where they have chairs in the river for you to sit in while you enjoy your drinks. Awesome! We had planned to stop and hang out at the beach at Andrew Molera, but it was SUPER windy there and the weekend crew was rolling in so we called it quits for this trip and decided we would just go back later this summer. We're hoping to take a group of people with us and maybe get two or three sites for everyone.
It was a perfect way to celebrate being married for one year.
Our real celebration was treating ourselves to a vacation in Big Sur. June 17th -19th we went camping at Pfeiffer Big Sur State Park campground. Emiliano had never been there so I took him on a tour of all the best places. We stopped many times along the way to check out the view from the road. He loved it!
Then after setting up camp we went for a walk in the nearby Big Sur River. The Water was so clear and refreshing. Later we made a yummy dinner over the fire and slept with a thousand stars above us.
The next morning, we made breakfast and went for a drive south to look for the famous sand dollar beach. We made numerous stops along the way to enjoy the scenery. One of the stops was at Julia Pfeifer Beach. We walked out a quarter mile to a lookout where you can see a waterfall that spills off the cliffs onto the sandy beach. That was so beautiful. By the time we finally got to Sand Dollar I was really tired. We had lunch in the back of the truck and walked out to get a good view of the beach and check to see if it would be surfable. It was foggy and windy and I was getting progressively slower so we headed back.
We decided instead to spend the afternoon at Pfeiffer Beach because it was clear and sunny and warm. The beach was much closer and I was able to rest on the beach while Emiliano went and explored sand dunes (he found an awesome knife in the sand) , rocks, and tried to collect grains of the purple sand for me. My brain is getting so foggy I didn't even realize that I had been to this beach before until I saw my feet in purple sand and then I remembered building sand castles with Hosanna and the crew.
For dinner we decided to treat ourselves to very overpriced burgers and fries and Nepenthe. Seriously, $7.75 for fries? You've got to be kidding. But the view is amazing. Even so, I recommend that you treat yourself if you have never been there. It's a one of a kind place. After that it was back to camp for showers and hanging out by the fire.
The next morning we packed up and headed into town looking for brunch and decided to indulge at the River Inn restaurant. We had amazing food out side on the patio. Then Emiliano ordered a morning beer and we headed down to the river where they have chairs in the river for you to sit in while you enjoy your drinks. Awesome! We had planned to stop and hang out at the beach at Andrew Molera, but it was SUPER windy there and the weekend crew was rolling in so we called it quits for this trip and decided we would just go back later this summer. We're hoping to take a group of people with us and maybe get two or three sites for everyone.
It was a perfect way to celebrate being married for one year.
Saturday, May 30, 2009
Help save CA State Parks
Hopefully you have already heard about the proposed closing of California State Parks. There will be a vote this Tuesday and we need to make our voices loud and clear to take a stand against this. Here are a few things you can do to help keep our parks open: Make a tax deductable donation, spend your summer vacation in a state park and pay the fees, shop at the park stores, ask your friends to help join in and show their support for parks, call or your legisalators and the governor, go to the raley on Monday night at Natural Bridges State Park in Santa Cruz or check you local area for one, go to the meeting in Sacramento on Tuesday and speak out, or click on this link for a pre-written email and just fill in the blanks with your info.
We only have a few days, please take action now. Thanks for you help with this it's really important to me.
/http://ga3.org/campaign/budget_may09
List of proposed park closures
http://www.calparks.org/takeaction/closurelist.html
Video
http://abclocal.go.com/kgo/story?section=news/state&id=6836054
We only have a few days, please take action now. Thanks for you help with this it's really important to me.
/http://ga3.org/campaign/budget_may09
List of proposed park closures
http://www.calparks.org/takeaction/closurelist.html
Video
http://abclocal.go.com/kgo/story?section=news/state&id=6836054
Tuesday, May 12, 2009
National Fibromyalgia Awareness Day
Today is National Firbromyalgia Awareness Day!
Fibromyalgia affects nearly 10 million people in the United States and about 3-6% of the world population, most of them are women. Today I'm asking you to take a few minutes to educate yourself about this condition, and support everyone you know who experiences the symptoms of FMS.
I have been doing a lot of research and I have come to a really good place with all of this. I am learning to listen to my body and not ignore the messages it is sending me. I am taking really good care of myself by eating well, drinking a lot of water, taking my supplements, and getting up and moving as much as possible. Lately I have been stretching/doing yoga, going on walks, gardening, playing pool, making tons of jewelry, cooking, and I even survived a zumba class. I still have good days and less good days, but I'm beginning to feel that I can manage this and get back in the game. I only wish I could drive longer distances so that I could go visit all my friends.
Fibromyalgia affects nearly 10 million people in the United States and about 3-6% of the world population, most of them are women. Today I'm asking you to take a few minutes to educate yourself about this condition, and support everyone you know who experiences the symptoms of FMS.
I have been doing a lot of research and I have come to a really good place with all of this. I am learning to listen to my body and not ignore the messages it is sending me. I am taking really good care of myself by eating well, drinking a lot of water, taking my supplements, and getting up and moving as much as possible. Lately I have been stretching/doing yoga, going on walks, gardening, playing pool, making tons of jewelry, cooking, and I even survived a zumba class. I still have good days and less good days, but I'm beginning to feel that I can manage this and get back in the game. I only wish I could drive longer distances so that I could go visit all my friends.
Thanks so much to everyone who has called, emailed, asked how I am, visited, helped out around the house, made food, and invited me to hang out. It really helps to have good friends around to enjoy life with. Please check out the links below to learn more about fibromyalgia.
General info about FMS and National Fibro Day
Interesting info with details and science facts
Info on how to best support people with Fibromyalgia
HAPPY SPRING!
Friday, May 1, 2009
A not so good day
On the 28th I finally had my visit with the rheumatologist. He asked me lots of questions, reviewed my medical history and my long list of test results, and poked me all over while asking me to stretch and turn this way and that. After a while he said, that I didn't have the right symptoms to have Lyme disease and that I was presenting like a classic case of fibromyalgia. He ordered a few more tests to check for random things like vitamin D level, and Hepatitis C, etc. He said he didn't expect anything from these tests either, but he wanted to rule out long shots. He advised me to take a sleeping pill and work with my doctor to find a suitable course of treatment. Being a person who does not completely believe in western medicine I have not picked up the sleeping pill prescription. I will find something at the health food store that will do the trick I'm sure. I only wish I had that certain something Wednesday night.
I haven't been sleeping very well this past week. I have been having crazy tension dreams and tossing and turning in pain. I think Emiliano is getting tired of me constantly wanting to switch sides of the bed with him in the middle of the night. Wednesday night was especially difficult because my entire back hurt and I just could not find a comfortable position. After Emiliano went to work and I had the whole bed to myself I was finally able to arrange a series of pillows to support all the hurty places and I slept until 11:45.
After I got up I still didn't feel rested and I hurt all over. I spent much of the day sitting around wondering what I did to cause this particular episode of pain. Was I sore from the long walk Ambrosia and I took on Wednesday? Was it the sugar and wheat in the cookies Emiliano brought home from the Pacific Cookie Company? or maybe a reaction to the giant plate of french fries I ate on Monday at the pool hall? I haven't been remembering to take my supplements regularly, maybe it's that. Or perhaps I simply did too much this week. I suppose I will never know. But when you feel so tired that a trip to the grocery store takes it out of you for the rest of the day you have to wonder if there was something you did that you can avoid later because you don't want every step to hurt.
I slept a lot better last night and I feel okay today. I have a friend coming over to bead with me and I think today will be a better day.
I haven't been sleeping very well this past week. I have been having crazy tension dreams and tossing and turning in pain. I think Emiliano is getting tired of me constantly wanting to switch sides of the bed with him in the middle of the night. Wednesday night was especially difficult because my entire back hurt and I just could not find a comfortable position. After Emiliano went to work and I had the whole bed to myself I was finally able to arrange a series of pillows to support all the hurty places and I slept until 11:45.
After I got up I still didn't feel rested and I hurt all over. I spent much of the day sitting around wondering what I did to cause this particular episode of pain. Was I sore from the long walk Ambrosia and I took on Wednesday? Was it the sugar and wheat in the cookies Emiliano brought home from the Pacific Cookie Company? or maybe a reaction to the giant plate of french fries I ate on Monday at the pool hall? I haven't been remembering to take my supplements regularly, maybe it's that. Or perhaps I simply did too much this week. I suppose I will never know. But when you feel so tired that a trip to the grocery store takes it out of you for the rest of the day you have to wonder if there was something you did that you can avoid later because you don't want every step to hurt.
I slept a lot better last night and I feel okay today. I have a friend coming over to bead with me and I think today will be a better day.
Saturday, April 18, 2009
General Updates
Health: I still don't have an official diagnosis. I have been to an acupuncturist, a body worker, a counselor, an allergist, and have received a steroid injection in my neck. I have found out that I can give a lot of blood at once, am hella allergic to grass, and a bit allergic to pineapple and peanuts. What a bummer, I really like pineapple. I am in a little less pain then before, except for the injection site which I think might be bruised a bit. I'm also all hopped up on steroids again and and have been extra productive because I can't sit still for long. I hope this wears off soon. It's a little weird. In general, I'm still taking it easy and looking forward to my visit with the rheumatologist on the 28th.
Work: I am currently not working as my doctor and I want me to rest and figure out what is going on before I try to find new work. I have been spending my free time getting crafty.
Life: I had a long and very relaxing road trip with friends and family earlier this month. I started out in Lake County with my Gramma, then off to Sacramento to Visit Hosanna, and then my in-laws, and made a stop in Sunnyvale on the way back down to see Ambrosia. It was a lot of being in the car and I was so thankful to have wonderful drivers to help me get around.
Now, that I'm back home I will be working on my craft projects, and getting the garden going.
Work: I am currently not working as my doctor and I want me to rest and figure out what is going on before I try to find new work. I have been spending my free time getting crafty.
Life: I had a long and very relaxing road trip with friends and family earlier this month. I started out in Lake County with my Gramma, then off to Sacramento to Visit Hosanna, and then my in-laws, and made a stop in Sunnyvale on the way back down to see Ambrosia. It was a lot of being in the car and I was so thankful to have wonderful drivers to help me get around.
Now, that I'm back home I will be working on my craft projects, and getting the garden going.
Monday, April 6, 2009
Not so relaxing facial
Hosanna and I went to the spa yesterday. We had good massages and then a long soak in a hot bath followed by not so good facials. While we were lying on the tables I could feel Hosanna thinking about all the chemicals in the products being aggressively rubbed into her face. I wondered why she wanted to have a facial considering her dislike for conventional beauty products. Then I was jolted out of my relaxation by a mud mask that stung and felt like it was burning my skin. The girl removed it and tried another product which burned a little less. She followed it up with an under eye cream that also made me wonder if my skin would be peeling soon. We noticed their huge display of Dermalogica products while we were there and today we did some research about them. We looked them up through the Environmental Working Group's data base called Skin Deep and discovered that lots of the products contained banned ingredients as well as ingredients known to cause cancer. Then I looked up some of the "natural" beauty products I buy at the Health Food Stores and was shocked to see that even the healthier alternatives I use are very dangerous. Hosie showed me a video which I would love for you all to watch, especially my girl friends and friends with babies. It is very interesting. Take a look at these two website to learn more.
Saturday, April 4, 2009
Nor Cal Travel
This past Monday night my mom picked me up and we drove all the way up to Lake County to visit with my gramma. She had eye surgery and we went to help take care of her. I don't know how much help I was with all my aches and pains, but I think she enjoyed having us there. My mom left on Thursday and I stayed until today. It was really nice just hanging out with my gramma. Things in lake county are so much slower and I was able to get some much needed rest and recovery. I was also able to watch more TV in one week then I usually do in many, many months.
I was picked up today by Gabriel, Hosanna's brother and we drove to Sacramento. Being in the car was very uncomfortable and I have been in pain all day. I even decided to take half a vicodin because the Advil just didn't work. Today is Hosie's birthday and to celebrate we will be going to the spa tomorrow for massages, facials, and a hot soak in the tubs. She and I both need this this and are looking forward to it very much. I can't wait!
I had an appointment with the rheumatologist for the 13th and I got a call saying that he needed to reschedule. The next available appointment isn't until the 28th. UUGGGH. I was really looking forward to that appointment so that I could get this all figured out and know how to best take care of myself. At least I have an appointment with the allergist soon.
I was picked up today by Gabriel, Hosanna's brother and we drove to Sacramento. Being in the car was very uncomfortable and I have been in pain all day. I even decided to take half a vicodin because the Advil just didn't work. Today is Hosie's birthday and to celebrate we will be going to the spa tomorrow for massages, facials, and a hot soak in the tubs. She and I both need this this and are looking forward to it very much. I can't wait!
I had an appointment with the rheumatologist for the 13th and I got a call saying that he needed to reschedule. The next available appointment isn't until the 28th. UUGGGH. I was really looking forward to that appointment so that I could get this all figured out and know how to best take care of myself. At least I have an appointment with the allergist soon.
Saturday, March 28, 2009
Isn't it ironic?
Well, I just survived a shopping trip at the new Whole Foods. The choices are overwhelming. Choices in general are a bit overwhelming these days, but my goodness there are so many wonderful goodies at Whole Foods. At one point I wandered off to the gluten and and dairy free desserts and when I found my husband again, he was standing in the beer isle nearly drooling on himself and said he didn't know what to do because there was too much to choose from. He ended up with Laugnitis IPA while I tossed a box of wheat/gluten/dairy free dark chocolate chunk cookies into the shopping cart.
Aside from that I'm looking forward to my future appointments with the allergist and the rheumatologist. I don't like not knowing exactly what is wrong and why I'm in pain. It could be fibromyalgia, or maybe it's Lyme disease, or something else. If it is Lyme disease I got it from a tick bite at camp Cazadero. I've been bitten by a tick only twice. I say only given my previous profession as a naturalist. That would be ironic if the place I got married was also the place I contracted the disease. This is ironic right? After hearing that damn Alanis song so many times I don't even know what is really ironic. Anyway, I'd really like to know what is going on with my body so that I can move on with getting better and living life. Think I'll try one of those cookies right now.
Aside from that I'm looking forward to my future appointments with the allergist and the rheumatologist. I don't like not knowing exactly what is wrong and why I'm in pain. It could be fibromyalgia, or maybe it's Lyme disease, or something else. If it is Lyme disease I got it from a tick bite at camp Cazadero. I've been bitten by a tick only twice. I say only given my previous profession as a naturalist. That would be ironic if the place I got married was also the place I contracted the disease. This is ironic right? After hearing that damn Alanis song so many times I don't even know what is really ironic. Anyway, I'd really like to know what is going on with my body so that I can move on with getting better and living life. Think I'll try one of those cookies right now.
Thursday, March 26, 2009
negative ions at the beach
I went to Natural Bridges today to visit with some Wolf School friends. It was a glorious day of warm sunshine, waves, and zillions of happy campers. I was told that I should spend more time at the beach because the ocean has negative ions that will help me feel relaxed and lessen the pain. I did feel relaxed and happy to see old friends, but the pain was still present. Every step in the sand was hurting my knees. The strange part was walking up the hill to get back to my car. I was so winded and had a hard time breathing. After that I went home had lunch and took a long psuedo nap. It is strange being so exhausted by seemingly small events. This is weird.
Wednesday, March 25, 2009
In Sickness and In Health
It's funny I always assumed that the sickness part only referred to occasional illness and old age. I certainly never thought it would apply during the first year of being married.
Many of you know that I have been sick since January. I had a stomach flu, an upper respiratory virus and pneumonia. If that wasn't enough I started having intense pain near many of my joints along with a mild upset tummy and long lasting tiredness. After many, many visits to the doctor and nearly every blood test known to man, my doctor and I have come to a likely diagnosis: fibromyalgia.
Here are some questions people have been asking me and the best answers I can give at this point.
1. What the hell is that?
Well simply put it's a collection of relatively random symptoms topped off with a generous dose of foggy head, tiredness, and extreme pain. There is no test for this syndrome only the ruling out of all other possibilities. My doctor feels that she has pretty much done that and said that for now I should begin to live my life as though this is the case and start to treat the symptoms. I will be seeing a specialist soon and he should be able to confirm this diagnosis or let me know if it could be something different we hadn't considered yet.
2.What does that mean for me if it is fibromyalgia?
Well, it means that I have to learn how to live with these symptoms, learn how to treat them, and focus on being healthy and very relaxed. I've got to learn to pace myself and not get too tired because when I 'm tired the pain gets worse. It also means I will not be dying and I can still have a baby. In fact, some women with fibromyalgia feel great while pregnant and breastfeeding.
3. How am I doing?
Physically, I'm in a lot of pain and I'm exhausted from daily life.
Emotionally, I'm okay. In one respect knowing what is going on and connecting all the pieces of my frail health is a relief. However, being sick for months has somewhat isolated me from the world and my friends and I am feeling a bit bored and occasionally a little lonely.
4. Is there anything you can do?
YES!! Right now, there are 3 things you can do.
1. Educate yourself so that you can understand what I am going through. Here are two websites with a lot of good information about fibromyalgia.
www.fmnetnews.com
www.mayoclinic.com/health/fibromyalsia/DS00079
2. Spend time with me. I may not be able to climb a mountain with you right now, but I would love to have my friends and family around for meals, walks, games, movie watching, craft projects, or to just sit on the beach with. Please be patient with me and know that every day is different, sometimes I feel fine other times I feel very sluggish.
3. Support my husband. Emiliano has been wonderful over the past few months and has taken really good care of me, but he needs a break and he needs support as he deals with the reality of what it is going to be like being married to me.
I'll use this blog to send out updates and share other interesting information about what is going on in my life. My hope is that I can use this technology to reach out to and connect with my community.
Many of you know that I have been sick since January. I had a stomach flu, an upper respiratory virus and pneumonia. If that wasn't enough I started having intense pain near many of my joints along with a mild upset tummy and long lasting tiredness. After many, many visits to the doctor and nearly every blood test known to man, my doctor and I have come to a likely diagnosis: fibromyalgia.
Here are some questions people have been asking me and the best answers I can give at this point.
1. What the hell is that?
Well simply put it's a collection of relatively random symptoms topped off with a generous dose of foggy head, tiredness, and extreme pain. There is no test for this syndrome only the ruling out of all other possibilities. My doctor feels that she has pretty much done that and said that for now I should begin to live my life as though this is the case and start to treat the symptoms. I will be seeing a specialist soon and he should be able to confirm this diagnosis or let me know if it could be something different we hadn't considered yet.
2.What does that mean for me if it is fibromyalgia?
Well, it means that I have to learn how to live with these symptoms, learn how to treat them, and focus on being healthy and very relaxed. I've got to learn to pace myself and not get too tired because when I 'm tired the pain gets worse. It also means I will not be dying and I can still have a baby. In fact, some women with fibromyalgia feel great while pregnant and breastfeeding.
3. How am I doing?
Physically, I'm in a lot of pain and I'm exhausted from daily life.
Emotionally, I'm okay. In one respect knowing what is going on and connecting all the pieces of my frail health is a relief. However, being sick for months has somewhat isolated me from the world and my friends and I am feeling a bit bored and occasionally a little lonely.
4. Is there anything you can do?
YES!! Right now, there are 3 things you can do.
1. Educate yourself so that you can understand what I am going through. Here are two websites with a lot of good information about fibromyalgia.
www.fmnetnews.com
www.mayoclinic.com/health/fibromyalsia/DS00079
2. Spend time with me. I may not be able to climb a mountain with you right now, but I would love to have my friends and family around for meals, walks, games, movie watching, craft projects, or to just sit on the beach with. Please be patient with me and know that every day is different, sometimes I feel fine other times I feel very sluggish.
3. Support my husband. Emiliano has been wonderful over the past few months and has taken really good care of me, but he needs a break and he needs support as he deals with the reality of what it is going to be like being married to me.
I'll use this blog to send out updates and share other interesting information about what is going on in my life. My hope is that I can use this technology to reach out to and connect with my community.
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