In the spirit of those "25 things about me" list that are making their way around MyFace and Spacebook, the organizers of "Invisible Illness Awareness Week" have put together the questionnaire "thirty things about my invisible illness you may not know." Here's my contribution:
1. The illness I live with: Chronic Lyme disease
2. I was diagnosed with it in the year: August 2008
3. But I had symptoms since: November 2007
4. The biggest adjustment I’ve had to make is: Accepting that I'm sick.
5. Most people assume: That I'll get well really soon.
6. The hardest part about mornings are: Taking the handful of pills at breakfast.
7. My favorite medical TV show is: House.
8. A gadget I couldn’t live without is: iPod, for it provides audiobooks when I can't read.
9. The hardest part about nights are: Trying to sleep when I hurt all over.
10. Each day I take 42 pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: Am so thankful I found Rose DeDan and her shamanic/Reiki healing practice. And am thankful that Nick and I both can now do Reiki as well.
12. If I had to choose between an invisible illness or visible I would choose: I may end up with a visible illness if I get a PICC line in. But if I had to choose, I'd pick a visible illness. Not that those with visible illness suffer any less, but at least I wouldn't hear "you don't look sick."
13. Regarding working and career: I'm very lucky that I don't "have" to work.
14. People would be surprised to know: I harbor no ill will towards ticks.
15. The hardest thing to accept about my new reality has been: Realizing that my old ways of working through a situation were no longer useful or healthy, and that I needed to accept the "new me" in my new situation.
16. Something I never thought I could do with my illness that I did was: Snowshoeing, even if it was just for a couple of hours.
17. The commercials about my illness: Ha ha ha...no commercials about chronic Lyme because it "doesn't exist."
18. Something I really miss doing since I was diagnosed is: Volunteering for Vegan Outreach.
19. It was really hard to have to give up: The illusion that I was in control.
20. A new hobby I have taken up since my diagnosis is: Vegetable gardening.
21. If I could have one day of feeling normal again I would: Spend the day in bed with my husband doing lots of things that are best left private.
22. My illness has taught me: So much I it should probably be a separate blog post.
23. One thing people say that gets under my skin is: "Maybe you're sick because you're vegan."
24. But I love it when people say: "You're looking good, but how do you feel?"
25. My favorite motto, scripture, quote that gets me through tough times is: This too shall pass; or, Buy the ticket, take the ride.
26. When someone is diagnosed I’d like to tell them: I will listen to you.
27. Something that has surprised me about living with an illness is: There's a lot of humor to be found in illness. Dark humor, perhaps, but humor nevertheless.
28. The nicest thing someone did for me when I wasn’t feeling well was: A bunch of my friends bought me a "spa day" package when I was feeling particularly unattractive. It was total surprise, and I was really touched by their caring.
29. I’m involved with Invisible Illness Week because: Invisible illnesses suck.
30. The fact that you read this list makes me feel: Heard.
Monday, August 31, 2009
Friday, August 21, 2009
Le jardin
Today I finished amending the soil in my plot at the community garden. I also added some brick pavers to use as stepping stones. And then...I planted stuff!
Already started plants: lettuce, broccoli, cabbage, Brussels sprouts, leeks, carrots.
From seed: two varieties of radish.
I also met a large sub-section of the homeless people who hang out in the garden. They were all very friendly and we chatted about what I was growing. The homeless/car-camper population in my neighborhood seems to have grown a lot over the past year, and I think it's important to maintain good relations with them. We all share this neighborhood, one way or the other. It's best done with respect on all sides.
Anyway, now I am very sweaty and sticky and dirty and tired. A shower, a snack, and a lie-down are in order.
Already started plants: lettuce, broccoli, cabbage, Brussels sprouts, leeks, carrots.
From seed: two varieties of radish.
I also met a large sub-section of the homeless people who hang out in the garden. They were all very friendly and we chatted about what I was growing. The homeless/car-camper population in my neighborhood seems to have grown a lot over the past year, and I think it's important to maintain good relations with them. We all share this neighborhood, one way or the other. It's best done with respect on all sides.
Anyway, now I am very sweaty and sticky and dirty and tired. A shower, a snack, and a lie-down are in order.
Friday, August 14, 2009
Back from the doctor
This morning I had an appointment with my LLMD. I've been fretting about this for weeks now because my overall condition has been backsliding. I'd gotten a little better in May/June--up to 30% of pre-Lyme normal--but I've slid back down to about 20% of normal in terms of energy. Cognition and neuro symptoms have been really bad a few times, but overall I'd say that I'm still averaging about 30%.
Because the May/June improvement trend didn't continue, I wasn't sure what we'd be doing next. Plus there was the babesia test. Too much for my brain to handle at once. So I'll break down the appointment into little numbered bits:
1) Babesia FISH test came back negative. This is good. I don't have many of the classic babs symptoms, so this is pretty much affirmation that I don't have babesia.
2) Yeast. Pesky yeast. I don't have many of the typical yeast overgrowth symptoms, but I have had more sugar cravings than usual. And given the antibiotics I'm taking, it's possible that I've got yeast overgrowth...again. I'm currently taking Nystatin daily to prevent this, but it might not have been enough.
So to combat yeast, I'm going to start a round of Diflucan. At the same time, I'm going to stop the Flagyl. Diflucan goes after yeast, as well as attacking the cyst form of Lyme. (I had been taking Flagyl for the cyst form.) There is also a theory that Diflucan impairs the borrelia bacteria's detox system, making it more vulnerable to attack from other antibiotics.
To summarize, we're hoping that the Diflucan will help with yeast overgrowth, attack the cyst form of the Lyme bacteria, as well as weakening the bacteria's detox system so we can hit it with other stuff.
3) I am continuing on IM Bicillin to fight the spirochete form of the Lyme bacteria.
4) I am going to start a new antibiotic to fight the third form that the Lyme bacteria can take. (The three forms are spirochete, cyst, and intracellular or L-form or cell-wall-deficient, whatever name you want to use.) I'm going to start Biaxin (500 mg twice per day) to treat the intracellular Lyme.
5) Looking at longterm possibilities: If I don't start showing some improvment in the next one to two months, we'll look at using ceftriaxone (brand name: Rocephin). Dr. R said that you can use IM ceftriaxone (butt muscle injection, like the Bicillin), or you can go with the IV option. There are pros and cons for each--the injections hurt a lot, but the IV is more expensive and has better penetration in the brain. But I'm not going to worry about that right now, because I've got plenty of changes going on with my meds.
I'm going back to see Dr. R in a month, and that's when I can start fretting about IV antibiotics again.
6) Given that I'm still not sleeping particularly well, I'm going to consult with the psychiatrist (Dr. M) who handles my psych meds to see if adding in Ambien would be an OK idea. I've asked her about this in the past and she wasn't too keen on the idea. And then I started sleeping better, but now I'm not so it's time to reevaluate.
And that pretty much wraps it all up. I'll leave you, my dear reader, with the new Updated and Complete Medication List, because I know it's just so fascinating.
Early AM:
Levothyroxine
Breakfast:
Sertraline, 175 mg
Diflucan, 200 mg
Biaxin, 500 mg
Nystatin
Vitamin C
Multi-B
Fibroboost
Quercetin
Glutathione precursors
Ashwagandha
Acetyl-l-carnitine
Monolaurin (600 mg)
Mid-morning:
Lumbrokinaise
Multivitamin
Ashwagandha
Mid-afternoon:
Calcium
Vitamin D
Quercetin
Omega-3/DHA
Dinner:
Biaxin, 500 mg
Nystatin
Vitamin C
Fibroboost
Quercetin
Glutathione precursors
Acetyl-l-carnitine
Monolaurin (600 mg x2)
Bedtime:
Clonazapam
Lumbrokinaise
Sublingual B12
Additional:
1.2 MU IM Bicillin, 3 injections per week
Vicodin, as needed for pain, typically 1 pill before bed
Because the May/June improvement trend didn't continue, I wasn't sure what we'd be doing next. Plus there was the babesia test. Too much for my brain to handle at once. So I'll break down the appointment into little numbered bits:
1) Babesia FISH test came back negative. This is good. I don't have many of the classic babs symptoms, so this is pretty much affirmation that I don't have babesia.
2) Yeast. Pesky yeast. I don't have many of the typical yeast overgrowth symptoms, but I have had more sugar cravings than usual. And given the antibiotics I'm taking, it's possible that I've got yeast overgrowth...again. I'm currently taking Nystatin daily to prevent this, but it might not have been enough.
So to combat yeast, I'm going to start a round of Diflucan. At the same time, I'm going to stop the Flagyl. Diflucan goes after yeast, as well as attacking the cyst form of Lyme. (I had been taking Flagyl for the cyst form.) There is also a theory that Diflucan impairs the borrelia bacteria's detox system, making it more vulnerable to attack from other antibiotics.
To summarize, we're hoping that the Diflucan will help with yeast overgrowth, attack the cyst form of the Lyme bacteria, as well as weakening the bacteria's detox system so we can hit it with other stuff.
3) I am continuing on IM Bicillin to fight the spirochete form of the Lyme bacteria.
4) I am going to start a new antibiotic to fight the third form that the Lyme bacteria can take. (The three forms are spirochete, cyst, and intracellular or L-form or cell-wall-deficient, whatever name you want to use.) I'm going to start Biaxin (500 mg twice per day) to treat the intracellular Lyme.
5) Looking at longterm possibilities: If I don't start showing some improvment in the next one to two months, we'll look at using ceftriaxone (brand name: Rocephin). Dr. R said that you can use IM ceftriaxone (butt muscle injection, like the Bicillin), or you can go with the IV option. There are pros and cons for each--the injections hurt a lot, but the IV is more expensive and has better penetration in the brain. But I'm not going to worry about that right now, because I've got plenty of changes going on with my meds.
I'm going back to see Dr. R in a month, and that's when I can start fretting about IV antibiotics again.
6) Given that I'm still not sleeping particularly well, I'm going to consult with the psychiatrist (Dr. M) who handles my psych meds to see if adding in Ambien would be an OK idea. I've asked her about this in the past and she wasn't too keen on the idea. And then I started sleeping better, but now I'm not so it's time to reevaluate.
And that pretty much wraps it all up. I'll leave you, my dear reader, with the new Updated and Complete Medication List, because I know it's just so fascinating.
Early AM:
Levothyroxine
Breakfast:
Sertraline, 175 mg
Diflucan, 200 mg
Biaxin, 500 mg
Nystatin
Vitamin C
Multi-B
Fibroboost
Quercetin
Glutathione precursors
Ashwagandha
Acetyl-l-carnitine
Monolaurin (600 mg)
Mid-morning:
Lumbrokinaise
Multivitamin
Ashwagandha
Mid-afternoon:
Calcium
Vitamin D
Quercetin
Omega-3/DHA
Dinner:
Biaxin, 500 mg
Nystatin
Vitamin C
Fibroboost
Quercetin
Glutathione precursors
Acetyl-l-carnitine
Monolaurin (600 mg x2)
Bedtime:
Clonazapam
Lumbrokinaise
Sublingual B12
Additional:
1.2 MU IM Bicillin, 3 injections per week
Vicodin, as needed for pain, typically 1 pill before bed
Tuesday, August 11, 2009
A sojourner in civilized life
This past weekend brought cloudy skies and a drop in temperature. On Saturday, I worked in my own little garden. I've got mostly native plants in the backyard, and I tend to the little strip of land up by the sidewalk. It's shared space, really, since there are three dwellings that make up our little plot of land (one detached house in front; two townhouses in back, where we live). But I tend to pay the most attention to the front/shared space. Which means that I also eat most of the strawberries I grow there. It is a sweet reward.
On Sunday, I visited my plot at the community garden. The previous gardener had woefully neglected the little spot, and it full of weeds, dried up plants, and bits of debris, including one cracked bottle of nail polish. I spent a few hours pulling out dead things and making a dent in the bindweed that is encroaching on the garden. (Bindweed is a horribly invasive plant and is impossible to actually kill.)
I made a fair amount of progress, though there's still work to be done. I also found a beautiful beetle clinging to the underside of a burlap sack in the back of the garden. He had died quite some time ago, and only the exoskeleton remained, iridescent in the sun. I carefully pulled the beetle off of the burlap and set him in the corner of my plot. I covered him with a pottery shard, and I asked that Beetle energy be at home in my garden, now named the Beetle Garden.
When I got home, I looked up Beetle in Animal Speak. Beetle is associated with metamorphosis, change, and new life. How perfectly appropriate for a new garden!
Anwyay, both during and after my adventures in the garden, I feared that perhaps I had pushed things too far. As restorative and nourishing as involvement with nature/plants/insects can be, I have only so much energy. And sometimes I can get lost in what I'm doing, to have the price extracted later.
It should be no surprise that Monday morning--or rather, afternoon, as I woke up at 12:00 PM--found me exhausted and sore. Today, Tuesday, I slept until 1:00 PM and am still exhausted. My throat hurts and I ache all over. Maybe I'm getting a cold. Maybe my allergies are acting up. Maybe it's just Lyme kicking me in the shin. In any case, I've got to take a break and live indoors and wrap myself in padding and be very gentle with myself.
Take what you want, and pay for it, says God.
On Friday, I'm going to see my LLMD. I need to figure out what I want and what I'm willing to pay. I'm doing a little better than a year ago. I can play in the garden, if I pay the price.
Should I add another antibiotic at this time? Is it time to switch to IV antibiotics? How much will treatment knock me down before I can get back up? Take what you want, and pay for it.
On Sunday, I visited my plot at the community garden. The previous gardener had woefully neglected the little spot, and it full of weeds, dried up plants, and bits of debris, including one cracked bottle of nail polish. I spent a few hours pulling out dead things and making a dent in the bindweed that is encroaching on the garden. (Bindweed is a horribly invasive plant and is impossible to actually kill.)
I made a fair amount of progress, though there's still work to be done. I also found a beautiful beetle clinging to the underside of a burlap sack in the back of the garden. He had died quite some time ago, and only the exoskeleton remained, iridescent in the sun. I carefully pulled the beetle off of the burlap and set him in the corner of my plot. I covered him with a pottery shard, and I asked that Beetle energy be at home in my garden, now named the Beetle Garden.
When I got home, I looked up Beetle in Animal Speak. Beetle is associated with metamorphosis, change, and new life. How perfectly appropriate for a new garden!
Anwyay, both during and after my adventures in the garden, I feared that perhaps I had pushed things too far. As restorative and nourishing as involvement with nature/plants/insects can be, I have only so much energy. And sometimes I can get lost in what I'm doing, to have the price extracted later.
It should be no surprise that Monday morning--or rather, afternoon, as I woke up at 12:00 PM--found me exhausted and sore. Today, Tuesday, I slept until 1:00 PM and am still exhausted. My throat hurts and I ache all over. Maybe I'm getting a cold. Maybe my allergies are acting up. Maybe it's just Lyme kicking me in the shin. In any case, I've got to take a break and live indoors and wrap myself in padding and be very gentle with myself.
Take what you want, and pay for it, says God.
On Friday, I'm going to see my LLMD. I need to figure out what I want and what I'm willing to pay. I'm doing a little better than a year ago. I can play in the garden, if I pay the price.
Should I add another antibiotic at this time? Is it time to switch to IV antibiotics? How much will treatment knock me down before I can get back up? Take what you want, and pay for it.
Thursday, August 6, 2009
Growing stuff makes me happy
Here's a positive post to balance out the previous ranting against the internet.
Today I got a call from the Seattle P-Patch Garden program. There are a couple of spots open in Greg's Garden in Ballard, and I'm at the top of the list! The wait list is usually 2 - 3 years, but I only had to wait about a year and a half. In the mean time, I've been practicing my veggie gardening in containers. (Tomatoes, peppers, and lettuce this summer.)
So now I need to meet with the site coordinator and figure out which plot is mine, get access to the tool shed, etc. And then I need to determine what I can do this time of year. It's a little late in the season, and I'm not feeling very well at the moment. Still, if nothing else, I can get the soil prepped and sow a cover crop for the winter or some such thing.
I just ordered a copy of Seattle Tilth's Maritime Northwest Garden Guide, which should be a very helpful guide for this novice. I'm all a flutter, thinking about seed catalogues and what I want to grow next year. I know I want to plant raspberries, strawberries, tomatoes, peppers, cucumbers, and Brussels sprouts.
Anyway, I'm very excited. It's one more reason to get well! I can't wait to play in the dirt!
Today I got a call from the Seattle P-Patch Garden program. There are a couple of spots open in Greg's Garden in Ballard, and I'm at the top of the list! The wait list is usually 2 - 3 years, but I only had to wait about a year and a half. In the mean time, I've been practicing my veggie gardening in containers. (Tomatoes, peppers, and lettuce this summer.)
So now I need to meet with the site coordinator and figure out which plot is mine, get access to the tool shed, etc. And then I need to determine what I can do this time of year. It's a little late in the season, and I'm not feeling very well at the moment. Still, if nothing else, I can get the soil prepped and sow a cover crop for the winter or some such thing.
I just ordered a copy of Seattle Tilth's Maritime Northwest Garden Guide, which should be a very helpful guide for this novice. I'm all a flutter, thinking about seed catalogues and what I want to grow next year. I know I want to plant raspberries, strawberries, tomatoes, peppers, cucumbers, and Brussels sprouts.
Anyway, I'm very excited. It's one more reason to get well! I can't wait to play in the dirt!
Tuesday, August 4, 2009
An open letter to the Internet
OK, internet. Enough with the Lance Armstrong energy drink ads that say "Tired of being tired?"
Because I am so going to kick you in the teeth the next time I see it.
It's all the more annoying because I'm sure that Lance Armstrong, when he was being treated for cancer, would also have wanted to kick someone who asked him if he was tired of being tired, for the purposes of selling an energy drink.
You know what, internet? Forget kicking in the teeth. I'm going to summon every ounce of strength left in my diseased husk of a body and rip you limb from fricking limb. Then then I'll send your body, piece by piece, to your friends and family, tying each parcel closed with a snippet from your intestines.
Because I am so going to kick you in the teeth the next time I see it.
It's all the more annoying because I'm sure that Lance Armstrong, when he was being treated for cancer, would also have wanted to kick someone who asked him if he was tired of being tired, for the purposes of selling an energy drink.
You know what, internet? Forget kicking in the teeth. I'm going to summon every ounce of strength left in my diseased husk of a body and rip you limb from fricking limb. Then then I'll send your body, piece by piece, to your friends and family, tying each parcel closed with a snippet from your intestines.
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