tag:blogger.com,1999:blog-71951000097855643672024-03-12T18:29:27.371-07:00In Search of WellnessLiving with Lyme diseaseThe Girl With The Sun In Her Headhttp://www.blogger.com/profile/14360533264570531791noreply@blogger.comBlogger156125tag:blogger.com,1999:blog-7195100009785564367.post-57523910479062742212013-09-10T16:12:00.001-07:002013-09-10T16:19:09.949-07:00Thirty things about my invisible illness that you may not knowIt's Invisible Illness Awareness Week.<br />
<br />
So, here's the 30 Things About My Illness That You May Not Know:<br />
<br />
1. The illness I live with is: Chronic Lyme/fibromyalgia/chronic fatigue
syndrome<br />
<br />
2. I was diagnosed with it in the year: 2008<br />
<br />
3. But I had symptoms since: 2007<br />
<br />
4. The biggest adjustment I’ve had to make is: The end of my marriage<br />
<br />
5. Most people assume: That I’ll get well eventually.<br />
<br />
6. The hardest part about mornings are: Waking up exhausted. Every day.<br />
<br />
7. My favorite medical TV show is: House<br />
<br />
8. A gadget I couldn’t live without is: iPod, for audiobooks when I have
trouble with reading comprehension<br />
<br />
9. The hardest part about nights are: Sleeping alone after so many years<br />
<br />
10. Each day I take 22 pills and vitamins. And I’m not currently treating
the Lyme. (No comments, please)<br />
<br />
11. Regarding alternative treatments I: Have found some incredibly valuable,
and others have been a complete waste.<br />
<br />
12. If I had to choose between an invisible illness or visible I would
choose: Visible, because then people wouldn’t doubt me.<br />
<br />
13. Regarding working and career: At 35 I have to figure out how to live and
work and what I’m going to do post-divorce, and I’ve got no clue how to
balance my disability with earning money.<br />
<br />
14. People would be surprised to know: I no longer regret getting sick.<br />
<br />
15. The hardest thing to accept about my new reality has been: Losing my
marriage.<br />
<br />
16. Something I never thought I could do with my illness that I did was: Go
on long-ish hikes again.<br />
<br />
17. The commercials about my illness: don’t exist.<br />
<br />
18. Something I really miss doing since I was diagnosed is: Not worrying
about what surprise symptom the next day will bring.<br />
<br />
19. It was really hard to have to give up: The illusion that I was in
control of my life.<br />
<br />
20. A new hobby I have taken up since my diagnosis is: <a href="http://www.flickr.com/photos/swordfernlady/">Photography</a><br />
<br />
21. If I could have one day of feeling normal again I would: Cry, because it
would feel like a horrible tease.<br />
<br />
22. My illness has taught me: People can surprise the fuck out of you, in
both good and bad ways. "Friends" might abandon you, but then other people can amaze you.<br />
<br />
23. One thing people say that gets under my skin is:
You don’t look like you’re in pain. –OR- You should use natural
remedies instead of opiates for your pain. That’s what I would do.<br />
<br />
24. But I love it when people: Encourage me to gently test what I think my
limits are, while respecting it when I fail.<br />
<br />
25. My favorite motto, scripture, quote that gets me through tough times is:
I am much stronger than you think I am.<br />
<br />
26. When someone is diagnosed I’d like to tell them: I will listen to you
and help where and when I can.<br />
<br />
27. Something that has surprised me about living with an illness is: How
impossible it is to describe to someone “normal.”<br />
<br />
28. The nicest thing someone did for me when I wasn’t feeling well was:
Come over to my hotel room with coffee and freshly baked bread to make sure
I hadn’t self-harmed.<br />
<br />
29. I’m involved with Invisible Illness Week because: Fuck invisibility.<br />
<br />
30. The fact that you read this list makes me feel: Heard.<br />
<br />
------<br />
<br />
Of interest may be my response to the same survey back in 2009, found <a href="http://mylifewithcfs.blogspot.com/2009/08/thirty-things-about-my-invisible.html">here</a>. The Girl With The Sun In Her Headhttp://www.blogger.com/profile/14360533264570531791noreply@blogger.com6tag:blogger.com,1999:blog-7195100009785564367.post-11892560022458355822013-08-29T16:12:00.000-07:002013-08-29T16:14:17.588-07:00The Privilege of Health<h5 class="uiStreamMessage userContentWrapper" data-ft="{"type":1,"tn":"K"}">
<span style="font-family: "Trebuchet MS",sans-serif; font-size: small;"><b><span style="font-weight: normal;"><span class="messageBody" data-ft="{"type":3}"><span class="userContent">Someone
thanked me yesterday for helping to remind her about a form of
privilege that goes unexamined: the privilege that comes with good
health. The ability to do what you want, when you want to. Never
fearing that you will face rejection or abandonment because of your
not-perfect health. Being able to eat without nausea, move without pain,
sleep without interruption, and trust that your brain isn't lying to
you when it reflects your self-image back at you. The freedom of being
believed by doctors, of not being dismissed because you're too young,
too female, too hysterical. Of not being told that a stronger person
wouldn't have this problem, that your imperfection must be the result of
a weak constitution or poor character. The privilege of doing and being
without always second-guessing yourself.</span></span></span></b></span></h5>
The Girl With The Sun In Her Headhttp://www.blogger.com/profile/14360533264570531791noreply@blogger.com0tag:blogger.com,1999:blog-7195100009785564367.post-73982583677760405752013-08-16T14:51:00.002-07:002013-08-16T14:51:57.888-07:00Living<div class="uiStreamMessage userContentWrapper" data-ft="{"type":1,"tn":"K"}">
<span class="messageBody" data-ft="{"type":3}"><span class="userContent">I
was trying to explain to someone the other day what living with chronic
pain is like. How I am never not in pain. And they were all, "What,
like now? You're in pain now?" And seemed so surprised, because I seemed
OK. I was sitting there, talking, not flinching or moaning. But, yeah, I
was in a lot of pain. Because it never goes away. Every second. Every
minute. Every hour. Every day. For years. If I'm lucky, it's below a 4
on the 1 - 10 scale. I'm not normally lucky.<br /> <br /> Someone joked with me yesterday, "Yeah, I spent the morning thinking I had Lyme, but I just woke up too early."<br /> <br />
They didn't mean anything by it. But I wanted to fucking deck them.
Lyme is not like missing out on some sleep. It's a monster that's taken
away the life I wanted, ruined my marriage, stolen years of my life,
left me in pain and depressed, alone and mostly friendless, and
medically disabled. I live in fear of the future because I don't know
what I'll be able to do when or for how long. Sometimes I question my
decision to stay alive. That is my reality. That is living with pain.
That is living with chronic illness.</span></span></div>
The Girl With The Sun In Her Headhttp://www.blogger.com/profile/14360533264570531791noreply@blogger.com0tag:blogger.com,1999:blog-7195100009785564367.post-11805519070433560872012-09-19T04:32:00.000-07:002012-09-19T04:32:36.071-07:00It's been a while...Yeah, so it's been a while since I last updated this blasted thing. In 2010 I'd hoped that by 2012, I'd be writing about how I'd kicked Lyme's ass and was a super ninja warrior. Or something.<br />
<br />
But I'm not. Since my last post, the Rocephin and/or my family history of gall stones led to the removal of my gall bladder. In May of 2010, I was probably the best I'd been since this whole thing started. I was up to maybe 45% of "normal" energy on a good day. Cognition was good. But then there was surgery and I stopped Rocephin for a few months. And when I went back on the Rocephin, it just didn't work anymore. Eventually I had the PICC removed.<br />
<br />
And slowly, very slowly, I started to slide backward. I've tried a number of treatments--drugs, herbs, detoxing--and in June of this year my doc suggested that I could try IV doxycycline. Which is more complicated than IV Rocephin and looks to be fairly expensive. It'd also be difficult for me to do in the summer, since doxy makes me very sensitive to the sun (and I already burn very easily).<br />
<br />
At that point, I was pulse dosing my antibiotics--two weeks on, two weeks off. I felt so much better on the "off" weeks. Probably because I wasn't dealing with side effects plus die off. Still, I just got to a point where I couldn't do the drugs anymore. I needed a break. So I'm on a drug holiday, and not the fun kind in Amsterdam. I've been off antibiotics since June.<br />
<br />
June and July were pretty great. I spent July in Oklahoma with family and friends, and despite the raging heat, I felt pretty good. Just being there, in the company of a dear friend, in contact with the land that has been my family's home for over a hundred years, land that is twisted into my DNA, land that I am connected to on a very primal level, well, all this was good. It was healing in itself. It fed my soul, which has kind of been wasting away.<br />
<br />
Now it's September. In a few days I turn 34. In a couple of months, I'll mark the five-year anniversary of this illness. Physically, I'm not doing well. I'm back down at around 20%. Cognition has slipped a bit, but I'm still at 75%, which isn't terrible. I'm in a lot of pain. Emotionally and spiritually, I'm kind of falling apart.<br />
<br />
I need to figure out what to do next. I can always just wait and decide later. I can go ahead with another drug or another treatment plan altogether. Or I can just stop and make peace with the idea that this is it. That this is my life now and for as long a future as I can picture. And then, with that acceptance, go ahead and figure out what I can and can't do, where my limits are, and try to make a life here, in this moment, without all the striving and struggling and drugs and side effects. I know it kind of sounds like quitting, but at some point the treatment is more damaging than the disease.<br />
<br />
And I don't know where my life is headed. I won't go into specifics, not on the Internet, where anyone can read this. But I will just say that might lose or maybe am losing or have already lost the structure and security and...crap, a lot of shit that I've built my life around. And I'm older and lonely and so fucking tired. I feel like there's little I can rely on, and my future is a big blank dark space.<br />
<br />
So there's the update. No awesome progress report. No happy ending.The Girl With The Sun In Her Headhttp://www.blogger.com/profile/14360533264570531791noreply@blogger.com15tag:blogger.com,1999:blog-7195100009785564367.post-46750179674121633702010-04-12T11:52:00.000-07:002010-04-12T11:52:28.196-07:00A new and improved pain chart!If you've ever been to the doctor because you're in pain, you have probably been asked to state your pain level on a scale of 1 - 10. The doctor usually says something terribly helpful like "ten is the worst pain you could possibly imagine."<br />
<br />
Really? Because my imagination is REALLY PRETTY GOOD. Because of this, I've discovered that I tend to under-report my pain level. I figure that if 10 is something like being flayed in a pot of boiling oil while being burned at the stake while a pear of anguish is slowly opened, well, then my horrible back pain is probably something like a 5. Because I've read about the Spanish Inquisition and watched a lot of horror movies and so I can think of some really sick stuff.<br />
<br />
So the pain chart has long been a source of humor in our house. Which is why I am so very pleased to present...<br />
<br />
<a href="http://hyperboleandahalf.blogspot.com/2010/02/boyfriend-doesnt-have-ebola-probably.html">A new and improved pain chart!</a> (Click it! It's funny! And awesome! And awesomely funny!)<br />
<br />
I want the author to be my new bestest friend in the whole wide world. Because she is funny and will make me laugh.The Girl With The Sun In Her Headhttp://www.blogger.com/profile/14360533264570531791noreply@blogger.com13tag:blogger.com,1999:blog-7195100009785564367.post-88017974193998335262010-03-21T12:28:00.000-07:002010-03-21T12:28:07.372-07:00All Clear on the Chestern FrontSo my chest CT is clear. No problems there. Which is very, very good. I don't want to have to give up my PICC line until it's time to stop the ceftriaxone.<br />
<br />
And, yes, I realize that the horribe pun in the blog post title means that I Am Going To Hell.The Girl With The Sun In Her Headhttp://www.blogger.com/profile/14360533264570531791noreply@blogger.com2tag:blogger.com,1999:blog-7195100009785564367.post-48590830133312979872010-03-02T15:08:00.000-08:002010-03-02T15:08:53.237-08:00New medications and the battle for a good night's sleepI saw Dr. R (my Lyme doctor) today. And since I haven't posted here for a while, I've got a fair amount to report. I'll start with the good news.<br />
<br />
<b>The good news</b>: I'm doing better. I know that every time I say this, I end up crashing. But for right now, today, I'm at about 35% energy-wise, 45% neuro-cognitive ability. This is the best I've been since getting sick in November 2007. So it appears that the Rocephin has been doing its job. And my labs are still beautiful, so my body is handling the medication load just fine.<br />
<br />
So because I'm doing well, it's time to push a little harder. Of course. So I'm going to be doing 2 grams Rocephin <i>twice </i>daily, four days on and three days off. I'm stopping the Plaquenil today.<br />
<br />
In two weeks, after I've adjusted to the Rocephin change, I'm stopping the Diflucan and grapefruit seed extract and going back on Flagyl (500 mg, twice daily, five days on and two days off). The doxy is staying the same (400 mg/day). I'm also going to stay on Cipro (for bartonella) for another 1.5 months. And I'm quitting the monolaurin (taken for EBV and HHV-6).<br />
<br />
And the most exciting thing of all? I am trying out private yoga classes. Regular classes are too fast-paced, but the restorative classes are too slow/easy. So I'm working one-on-one to establish poses that I can do (particulary with my PICC line in place) and remind my body what the proper alignment is said poses. I went to my first lesson yesterday, and it was a really good experience. <br />
<br />
And now <b>the bad news</b>. Holy morphine, Batman, I hurt like a son of a biscuit. The joint pain has receded and for the moment is only bothering me occasionally. The deep bone pain is annoying but that's about it. The back/neck pain, however, is like to drive me mad. I'm currently taking 20 mg Kadian (extended release morphine) at night, along with 1200 mg gabapentin, and it's barely touching the pain. <br />
<br />
So I'm going to go up to 1800 mg gabapentin and see if that helps. If not, I'm going to have to talk to my pain management doctor to see to do next.<br />
<br />
The pain is, naturally, interfering with sleep in a major way. At the same time, the trazodone hasn't been helping. I'm making an appointment to talk about what, if anything, I can/should do about it. I've also started acupuncture, and I'm hoping it will help.<br />
<br />
Finally, a new symptom has popped up. I've felt very short of breath on and off for a while. Sometimes during activity, sometimes when I'm lying in bed. There appears to be no pattern. So just to be on the safe side, I'm going to have a chest CT tomorrow morning to rule out a possible pulmonary embolism. With the PICC line, there's the chance of small blood clots forming at the tip of the line and breaking off and entering the lungs. This, as you might guess, is not good. Thus, the CT.<br />
<br />
There are many possible causes for shortness of breath, including thyroid and adrenal issues (and babesia and the bizarre mess that is Lyme itself). So there are many less severe possibilities than pulmonary embolism. Still, better safe than sorry and all that.The Girl With The Sun In Her Headhttp://www.blogger.com/profile/14360533264570531791noreply@blogger.com3tag:blogger.com,1999:blog-7195100009785564367.post-54395334539857452232010-02-04T18:47:00.000-08:002010-02-04T18:47:39.189-08:00My night is colored headache grayI'm still wrestling with sleep. My pain management doctor has switched me from hydromorphone to oxycodone at night. I fear that the pain meds are still acting as a stimulant, though.<br />
<br />
I've also stopped taking clonazapam due to possible drug interactions. In its place, I've been prescribed a very small dose of trazodone. Trazodone is a tetracyclic antidepressant that is also used to treat insomnia. Because, apparently, drowsiness is a common side effect. I am starting the trazodone tonight.<br />
<br />
I very much hope it works, because I'm like the walking dead here. I've been able to get maybe six hours of sleep in the last two days, and I'm exhausted. Amusingly enough, I've just started the new Charlie Huston novel, <i>Sleepless</i>, a nice little post-apocalyptic story about a plague that prevents people from sleeping.<br />
<br />
I am aware of the irony. Thank you.The Girl With The Sun In Her Headhttp://www.blogger.com/profile/14360533264570531791noreply@blogger.com4tag:blogger.com,1999:blog-7195100009785564367.post-4220394028564005652010-01-24T17:00:00.000-08:002010-01-24T17:00:33.805-08:00Tamer of cares, to weary toil repose, and from whom sacred solace in affliction flowsSleep. Such a simple thing. And so horribly fickle.<br />
<br />
At night, I can't sleep. I think the hydromorphone is paradoxically acting as a stimulant (Valium did the same thing when I took it a while back), keeping me awake. And the dose I'm taking isn't quite enough to dull the pain, particularly on nights like the last. My wrists, hands, shoulders, hips, and ankles all ached, and a chill current passed through my bones.<br />
<br />
I'm now taking 600mg gabapentin at night, but it's also not quite doing the trick.<br />
<br />
Adding extra clonazapam doesn't help me fall asleep any faster, though it does result in heavy sedation the following morning.<br />
<br />
A typical night/day is as follows. Go to bed at 11:00. Try to sleep. Fail. Eventually get out of bed around 2:00 and fuss around for 30 - 60 minutes. Go back to bed. Finally fall asleep. Alarm goes off at 10:00 AM. Try to get up. Sometimes fail, sometimes make it. Am exhausted and foggy. By 4:00 PM, am fighting to stay awake. Pinching myself. Try to stay busy. Sometimes stay awake. Sometimes simply cannot and fall asleep despite myself. Wake up in one or two hours. Feel like crap. Go to bed at 11:00. Wash, rinse, repeat.<br />
<br />
I've tried getting up at 8:00 to make sure I'm REALLY REALLY REALLY tired by 11:00 so I have no choice but to fall asleep. No joy. I think that the medication combination is somehow undermining my efforts. Which poses its own problem. If I stop taking the hydromorphone entirely, or even reduce the dose, it's likely that the pain, which is already highly distracting while on narcotics, will keep me awake. Additional sleep aids (clonazapam as well as other herbal options) might knock me out, getting tossed into the river Lethe without a flotation device isn't exactly what I'm going for either.<br />
<br />
Anyway. To summarize. So. Frustrating.<br />
<br />
I'm seeing my pain management doctor on Friday, so hopefully he'll sort out the hydromorphone portion. And then I need to see Dr. M to get the clonazapam sorted. And did I mention that Dr. R prescribes the gabapentin? I wish I could get everyone in a room together and have them actually collaborate on One Treatment Plan, with each other's immediate opinions and feedback. I also wish I had a unicorn.The Girl With The Sun In Her Headhttp://www.blogger.com/profile/14360533264570531791noreply@blogger.com3tag:blogger.com,1999:blog-7195100009785564367.post-53844901671982683722010-01-21T23:29:00.000-08:002010-01-21T23:29:52.620-08:00In the Arms of SleepYesterday I had a lymphatic drainage massage, then I saw Rose for a shamanic/Reiki healing session. And then I had the first dose in this round of IV glutathione. During my session with Rose, there was <i>a lot </i>of energetic clearing work that went on. I could tell the story, but it just wouldn't have the same resonance anymore, which I suppose is kind of the point.<br />
<br />
In any case, there was all sorts of physical, emotional, mental, spiritual clearing. Sweeping out the cobwebs.<br />
<br />
By the time I got into bed, I was ready for sleep. And I got sleep. Good sleep, too. And a lot of it. My alarm went off at 10:00 AM. I turned it off and resolved to get up. Then it was noon. OK, I thought, it's really time to get up. So I get out of bed. At 2:00 PM.<br />
<br />
I had a snack, took my meds, and tried to stay awake. By 4:30, I was back in bed and fast asleep. I got up again at 6:30. So when Nick came home from work at 7:00, I'd been awake for a grand total of three hours.<br />
<br />
So, I've had two days of little but self-care. Clearly it was needed, and I'm glad I'm starting to listen to my body.The Girl With The Sun In Her Headhttp://www.blogger.com/profile/14360533264570531791noreply@blogger.com1tag:blogger.com,1999:blog-7195100009785564367.post-42576644753595488012010-01-16T22:34:00.000-08:002010-01-16T22:40:26.370-08:00I freaked out very very badlyAs you may remember, I had <a href="http://mylifewithcfs.blogspot.com/2010/01/beauty-queen.html">a wee bit of difficulty</a> on Tindamax. After my second attempt to start it, on New Year's Day, I collapsed in a puddle of confused neurotransmitters. I thought that maybe--just maybe--this could be the sign of a very powerful die-off reaction (cysts in the brain and all), but I wasn't sure. Given my physical pain level at the time, I decided to stop the Tindamax again, wait until I saw my pain management doctor to get the pain under control, and then see what my LLMD had to say about my reaction to Tindamax. (I was planning to see both doctors within a week of each other anyway.)<br />
<br />
I saw my LLMD on Friday. I told him how I reacted to the Tindamax--which was entirely different than I'd reacted to Flagyl, a similar drug--and he suggested that it's highly likely that Tindamax and I are just not compatible. That my extreme emotional walloping was the result of a nasty drug side effect and not a herx (die-off reaction). So no more Tindamax for me. Done.<br />
<br />
Since Tindamax was my cyst-killing agent, we needed to plug that gap in my medication regimen. Plaquenil may or may not kill cysts, depending on whose research you read. So I might be covered there. But we're adding the Diflucan back in (there were signs that yeast might be returning anyway), and I'm also starting grapefruit seed extract, which is supposed to help with cyst-killing.<br />
<br />
I also asked Dr. R to prescribe another round of IV glutathione, as it seemed to really help last time. I think that my recent lab work is also testament to the glutathione and other liver support I'm doing. I have the lab results of someone who isn't taking any antibiotics, not those of someone on an extended period of of multiple antibiotics. So that is very, very good.<br />
<br />
Since it's been a while, we also checked my vitamin B12, vitamin D, and ferritin (iron storage) levels. My B12 was over 2000, while "normal" is between 211 - 911 pg/mL. So suck it, vegan-haters, all claiming that I can't get my B12. Suck. It.<br />
<br />
My vitamin D just barely above the minimum of the normal range. Not terribly shocking, since it's a Seattle winter and I've been avoiding too much sun exposure due to the doxycycline. Still, it's a clue that I might want to make sure I continue to supplement, perhaps even increasing from 1000 IU to 2000 IU daily. It is, after all, a dark and cloudy winter in the Emerald City.<br />
<br />
Finally, my ferritin level is right in the middle of the normal range for a woman. And I haven't been supplementing with iron for ages--months or maybe even a year. So, again, suck it, vegan-haters. I get my iron. Suck. It.<br />
<br />
Every happy lab result is like a little victory.<br />
<br />
P.S. Points to those who get the song reference in my post title. I'm the white rabbit.<br />
<br />
P.P.S. I still fondly remember the TKK concert at which I was kicked in the face, resulting in the loss of one of the lenses in my glasses. Luckily, my brother was with me and could drive us home. Ah, memories.The Girl With The Sun In Her Headhttp://www.blogger.com/profile/14360533264570531791noreply@blogger.com1tag:blogger.com,1999:blog-7195100009785564367.post-20198102400397812572010-01-16T21:59:00.000-08:002010-01-16T21:59:39.287-08:00It could all be so simple, but you'd rather make it hardHydromorphone. Dilaudid, if you want to get formal. We're figuring out how we feel about each other. What direction is this relationship going? Is this something that's going to work? Because at first, darling D, you just weren't doing enough for me. I did exactly what I was supposed to do, but your 2 mg pill was just not meeting my needs. I'd stay up late into the night, wishing you could do for me what you'd promised.<br />
<br />
So we've moved to the 4 mg pill level. I let you get to second base with me in the backseat of the car. I slept too deeply afterward, but that could have been the clonazapam talking. I woke up at 4 AM and you were gone. I ached for you. Literally, darling. My hips, legs, ankles...I was on fire for you, burning a cold electrical passion in the very marrow of my bones!<br />
<br />
I got out of bed to look for you, and you were there for me. Another 4 mg and we snuggled back to sleep.The Girl With The Sun In Her Headhttp://www.blogger.com/profile/14360533264570531791noreply@blogger.com0tag:blogger.com,1999:blog-7195100009785564367.post-48511357459332274262010-01-13T00:56:00.000-08:002010-01-13T01:00:14.560-08:00Hydromorphone and the Ugly Sick Pain FaceLast Friday I saw my pain management doctor. The methadone hives had returned by that point, so it was obvious that I had to switch medications. He prescribed 2 mg hydromorphone (common brand name: Dilaudid), after my insurance refused to cover his first choice, oxymorphone, or Opana; Opana, despite being developed around 1914 and introduced to the U.S. in 1959, is still only available as a brand name drug. So it's expensive. Like, ridiculously expensive. <br />
<br />
Anyway, now I'm taking hydromorphone. It's not working. At least, it's not working at my current allowed dose. Which is why I'm awake and blogging at 1:00 AM. Tomorrow I'm going to call the pain management doctor and ask what I should do. It's possible that I need a larger dose, or that this medication just isn't right for me.<br />
<br />
The joint and bone pain continues unabated. The bone pain isn't surprising, but I'd always been thankful that of all the crap I've got to deal with, at least I don't have the classic Lyme joint pain. It's mostly in my lower body--hips, knees, ankles, and all the tiny little joints in my feet.<br />
<br />
The pain is causing me to make my Ugly Sick Pain Face. I grind my teeth and clench my jaw and scowl without realizing it. Until I look in the mirror. And then I'm all, "Damn! Where did that scary, ugly chick come from?"<br />
<br />
I've told Nick that if the most severe of my Ugly Sick Pain Face Lines remain after I get well, I am seriously going to consider plastic surgery to smooth out my face just a little. Or else I will forever look like I'm in a very bad mood. And once we're not spending gazillions of dollars on Lyme treatment every month, we'll have the disposable income for a little beauty restoration. Right?<br />
<br />
Of course, it's highly likely that the Ugly Sick Pain Face Lines will fade on their own once I'm no longer making the Ugly Sick Pain Face all the time. On my good days, and particularly during my rare good weeks, the lines do fade and I suddenly look my age again.The Girl With The Sun In Her Headhttp://www.blogger.com/profile/14360533264570531791noreply@blogger.com2tag:blogger.com,1999:blog-7195100009785564367.post-85734553879785941132010-01-05T03:03:00.000-08:002010-01-05T21:51:19.288-08:00Flow morphia slowOn Saturday morning, I decided that I had to take a vacation from Sucktown, and I went back on the methadone. Allergies be damned. I couldn't deal with one more sleepless night <br />
<br />
Saturday and Sunday night were blissful. I <i>slept</i>. For hours and hours and hours. And then some more. The deep bone pain was gone and I could catch up on all the rest I'd been missing.<br />
<br />
Unfortunately, the itching has returned. Still no hives, but it's looking like confirmation that I'm slightly allergic to methadone. But I don't care. I'm going to keep using it until I see my pain management doctor on Friday.<br />
<br />
But wait! If I'm all happy and sleeping well and life is roses, why am I blogging at 3:00 AM?<br />
<br />
Nightmares. Unrelenting nightmares. After my first hour or so of sleep, I got up and had a tiny bit of chocolate (always good for you). OK. Back to bed. More nightmares. I try to clear the energy in the room. But I keep falling back asleep and into the nightmares.<br />
<br />
So I'm blogging, hoping my brain will reboot and I can get some more of that delicious sleep. I plan to spend a little time clearing out my energy field, as well as the bedroom's. Make sure I'm properly grounded and centered before I get back into bed.<br />
<br />
Update: Finally got to sleep around 5:00 AM. Slept until 2:45 PM. Was nauseated and dizzy all day. Whee!The Girl With The Sun In Her Headhttp://www.blogger.com/profile/14360533264570531791noreply@blogger.com0tag:blogger.com,1999:blog-7195100009785564367.post-28116159524460687682010-01-01T22:13:00.000-08:002010-01-01T22:19:07.200-08:00Beauty queenThe last week has kind of sucked. No. Correction. It's really sucked. Like black hole levels of suck.<br />
<br />
I stopped taking the methadone on Dec. 23. I'd broken out in little bumps which I was pretty sure where hives (they didn't itch), so I was fairly confident that I was mildly allergic to the methadone. It took over a week, but the bumps have disappeared.<br />
<br />
Of course, this means that I've been using Vicodin for pain management...during the most painful herx I've experienced. Some nights I'd take a couple Vicodin, a couple gabapentin, and extra clonazapam, then get up in a couple of hours to take more Vicodin, and I still couldn't sleep.<br />
<br />
To make matters worse, I (stupidly, I realize now) started my new Tindamax prescription <i>in the middle of this herx</i>. Great idea, right? Start a new drug that's likely to provoke it's own herx while I'm already serving as the interim mayor of Sucktown. I'm a genius. Really.<br />
<br />
I don't want to get into the unpleasant details, but I only lasted five or six days before I had to stop and get my head together. I took a week's break, and this morning I re-started the Tindamax.<br />
<br />
And now I'm a mess again. I just won the Sucktown County beauty pageant. For the talent competition, I curled up on the sofa and cried into a pillow. (And let me just say? <i>Nailed it!</i>)<br />
<br />
In a week I see my pain management doctor again, and hopefully I'll get something that both controls the pain and doesn't provoke an allergic reaction. And then in two weeks I'm seeing my LLMD. Because when you're a beauty queen, your dance card fills right up.The Girl With The Sun In Her Headhttp://www.blogger.com/profile/14360533264570531791noreply@blogger.com4tag:blogger.com,1999:blog-7195100009785564367.post-78261616725623155302009-12-22T16:02:00.000-08:002009-12-22T16:02:58.384-08:00Small changesI'm still feeling rather poorly, but I think I'm slowly coming out of the latest herx. The body pain has gradually faded, which is good because I'd been taking an increased dose of methadone and I'd rather not do that any longer than necessary.<br />
<br />
The strangest symptom, though, has tormented me on and off for over a week. Nausea. Sudden, intense bouts of nausea. Can't wait for that to go away, I tell you!<br />
<br />
Anyway, I saw my LLMD last Friday, and the only change we're making to my medication regime is that I'm discontinuing the Diflucan and starting Tindamax for the cyst form of Lyme. I'm pulsing the drug--two weeks on, two weeks off. I started taking it on Sunday and haven't noticed any terrible side effects, which is nice.The Girl With The Sun In Her Headhttp://www.blogger.com/profile/14360533264570531791noreply@blogger.com0tag:blogger.com,1999:blog-7195100009785564367.post-61030077124190718712009-12-16T13:39:00.000-08:002009-12-16T13:39:01.887-08:00Jinx!Yeah, I jinxed it again. I said that <a href="http://mylifewithcfs.blogspot.com/2009/12/knock-on-wood.html">I was feeling better</a>, and now I'm crashing again. Seriously, this little dance is getting <i>old</i>.<br />
<br />
The Lyme cycle means that when the bacteria try to reproduce and get killed, I experience the die-off reaction (herx) and feel like crap. Then the herx fades and I start to feel better. And in the case of the last two jinxes, I think I'm making continued improvement due to the Rocephin. And so I start to think, "Hey, this is great! I'm feeling better! Woo hoo!" And then I write about it because I'm at the top of the roller coaster and everything looks wonderful...and then I crest the hill and the herx hits me and <i>whoosh</i> I'm falling back down.<br />
<br />
The goal is to make the good times better and the bad times less severe and/or prolonged. I still think that's happening. However, that doesn't mean that the bad times are any fun.<br />
<br />
Over the past week, I've seen my cognitive function decline. I can't concentrate as well, and I have started making more speech and writing mistakes. (I just typed "speach" and had to correct it.) I forget things more easily. Sometimes I forget to take a round of medication, which is not good.<br />
<br />
The body pain is also increased. The new methadone prescription isn't keeping up with it right now. My hips ache to the point that standing, sitting, and lying down are all painful. Walking hurts. My back hurts. My fingers hurt.<br />
<br />
And I'm tired. I'd finally gotten used to getting up early-ish, but now I'm back to sleeping 12 - 14 hours a night. Which isn't any fun, because I keep waking up due to the pain.<br />
<br />
But I know that this is temporary. It's clearly a herx, and I've just got to take care of myself and allow my body the space and time it needs to get through this. I've got extra energetic support in place. I'm getting a massage tomorrow. And I'm spending extra time in my jammies, resting and cuddling the cats. It's all a part of healing.The Girl With The Sun In Her Headhttp://www.blogger.com/profile/14360533264570531791noreply@blogger.com2tag:blogger.com,1999:blog-7195100009785564367.post-8087545312224232009-12-09T15:34:00.000-08:002009-12-09T15:35:30.504-08:00Christmas givingI know I say something like this <a href="http://mylifewithcfs.blogspot.com/2008/12/all-i-want-for-christmas.html">every</a> <a href="http://veganicecream.blogspot.com/2006/12/christmas-list.html">year</a>, but it bears repeating this year too.<br />
<br />
As of Thanksgiving, I've been sick for a full two years. Two years of <a href="http://mylifewithcfs.blogspot.com/2009/10/scorecard.html">debilitating symptoms</a>. Two years of putting life on hold. And, what hurts the most, two years of not being able to get out and volunteer for <a href="http://www.veganoutreach.org/">Vegan Outreach</a>. Two years without leafleting college campuses, concerts, and festivals. I miss this joyful work. A lot.<br />
<br />
This is where I ask you to help me. Instead of any Christmas present, I'm hoping that you'll <a href="http://www.veganoutreach.org/about/donate.html">donate in my honor to Vegan Outreach</a>. You will be giving me the gift of activism, in addition to helping educate the public about compassionate choices we can make for animals.<br />
<br />
And just to sweeten the deal, throughout the month of December, there is a $70,000 matching donation challenge. So whatever you give will be automatically DOUBLED through a matching donation! It's like you're getting a buy-one-get-one-free donation/present for me!<br />
<br />
I'm telling you, if you do this, I'll think you're the bee's knees and the cat's pajamas all rolled into one beautiful package.The Girl With The Sun In Her Headhttp://www.blogger.com/profile/14360533264570531791noreply@blogger.com2tag:blogger.com,1999:blog-7195100009785564367.post-19860330345698366102009-12-08T16:24:00.000-08:002009-12-08T16:24:47.467-08:00Knock on woodThe last time I posted to say, "I think I might be feeling better," I totally jinxed it and a few days later ended up much worse. So I might be tempting fate here. But...<br />
<br />
I think I might be feeling better. Previously I was typically functioning at 20% of normal. I think I'd rate my last week at 25 - 30%. I've been up this high before (never thought I'd think 30% of normal was "good"), and then I crashed. The hope is that someday I climb higher and don't crash, or at least don't crash as hard. And then climb back up.<br />
<br />
Of course, 30% is still very limited, and I've learned not to push myself when I am feeling better. But maybe maybe maybe the new combination of medications is fighting off the Lyme and bartonella. And the methadone has, so far, been helpful for the pain. And I'm currently doing two infusions of IV glutathione each week, so I'm keeping my liver and detox functioning happy. And of course the Reiki and other energetic healing has proven invaluable.<br />
<br />
Keep your fingers crossed for me.The Girl With The Sun In Her Headhttp://www.blogger.com/profile/14360533264570531791noreply@blogger.com3tag:blogger.com,1999:blog-7195100009785564367.post-77921711378262750742009-12-05T17:40:00.000-08:002009-12-05T17:41:10.884-08:00Just One FixToday I saw a pain management specialist. My LLMD recommended him if I felt I needed something stronger than the Vicodin that had originally been prescribed. I have two categories of pain. The first is this horrible upper back pain that I've had for well over ten years. It's gotten a lot worse since I've been sick. It's with me every minute, every hour, every day. <br />
<br />
The second kind of pain is this shooting/hot/cold/electric pain in my bones and sometimes joints. This comes and goes, and is most likely directly the result of Lyme and/or herxing from the antibiotics.<br />
<br />
The pain management doctor prescribed methadone. I got the fanciest prescription slip I've ever seen (so many security features!), and I had to sign a long document promising that I wasn't going to sell my drugs on the street or use them more frequently than prescribed, etc. Basically, be good.<br />
<br />
I've dropped off the script at Walgreens, and I can't wait to pick it up tonight. At this point, the Vicodin dulls the pain a little, but it never goes away (the back pain, that is; the other pain comes and goes). So I'm happy to stop the Vicodin and see how the other drug treats me. The idea of a pain-free night makes me swoon. I am also supposed to continue with the gabapentin.<br />
<br />
But I haven't gotten to the most exciting part of the appointment. I've seen numerous doctors over the last dozen or so years for the upper back pain. Responses have varied from "it's probably an ergonomic issue--change your work space" (didn't help) to "try physical therapy" (didn't help) to just nothing more than a shrug. I understand that it's natural to doubt a 21-year-old complaining of intense back pain, but still. Really.<br />
<br />
Anyway, the doctor today pressed on a spot on my neck and asked if I could feel the sensation in my shoulder blade area. Why, yes, I could. He said that I probably had a pinched nerve in my spinal column, and if so, it could probably be fixed with minimally invasive surgery.<br />
<br />
I nearly fell out of my chair. Fixed? You mean this could just go away?!<br />
<br />
Obviously, I'll want to look into the issue and so my research. And then I'd need an MRI to determine if there really is a pinched nerve there.And then I'd need to choose a doctor for surgery and so forth. So I'm not acting on anything immediately, but it's just so exciting that there might be a clear and discernable cause for the problem.The Girl With The Sun In Her Headhttp://www.blogger.com/profile/14360533264570531791noreply@blogger.com1tag:blogger.com,1999:blog-7195100009785564367.post-72494132556360336302009-11-30T17:13:00.000-08:002009-11-30T17:13:48.652-08:00If I make it through December...Thanksgiving has come and gone. I've officially been sick for over two years now. It's dark, even in the daytime. I'm tired and I ache and I have so so so many pills to take, not to mention the daily IV infusions.<br />
<br />
Every year I think that if I can just make it through December...<br />
<br />
<object height="40" width="250"><param name="movie" value="http://listen.grooveshark.com/songWidget.swf"></param><param name="wmode" value="window"></param>
<param name="allowScriptAccess" value="always"></param><embed src="http://listen.grooveshark.com/songWidget.swf" type="application/x-shockwave-flash" width="250" height="40" flashvars="hostname=cowbell.grooveshark.com&widgetID=17366858&style=metal&p=0" allowScriptAccess="always" wmode="window"></embed></object>The Girl With The Sun In Her Headhttp://www.blogger.com/profile/14360533264570531791noreply@blogger.com0tag:blogger.com,1999:blog-7195100009785564367.post-35325518187405808922009-11-20T13:53:00.000-08:002009-11-20T13:53:02.485-08:00Doxy, ceftriaxone, plaquenilI've been taking my entire daily dose of doxycycline (400 mg) at once, in the morning, with breakfast. And it's going pretty good so far! Yesterday I didn't have enough to eat, and I was pretty nauseated for a little while, but it passed.<br />
<br />
And I'm not getting the weird side effects from the ceftriaxone in the evening. So perhaps it was just the doxy + ceftriaxone at the same time that was giving me grief.<br />
<br />
Finally, I'm still waiting to hear back from my LLMD regarding my <a href="http://mylifewithcfs.blogspot.com/2009/11/experimentation-and-confusion.html">questions about Plaquenil</a>.The Girl With The Sun In Her Headhttp://www.blogger.com/profile/14360533264570531791noreply@blogger.com1tag:blogger.com,1999:blog-7195100009785564367.post-59738354142842510592009-11-16T16:58:00.000-08:002009-11-16T16:58:36.483-08:00Experimentation and confusionJust a few items of note on this very rainy Monday.<br />
<br />
1) After stopping all antibiotics for three days to re-boot my system, I re-started the IV ceftriaxone (made by Wockhardt). None of the previously bothersome symptoms appeared. Huh. So perhaps I do not need to switch to the more expensive Sandoz-made ceftriaxone.<br />
<br />
2) This morning I re-started doxycycline. I tried taking all 400 mg in one dose. I'd previously feared that this would lead to extreme nausea and vomiting. However, apart from some very mild stomach discomfort (which could be attributed to my breakfast of strong coffee), I was fine. Perhaps the sucralfate is helping? Or perhaps I'm just a morning doxy person? Weird.<br />
<br />
3) I just found out that new research indicates that Plaquenil does <i>not </i>kill the cyst form of the Lyme bacteria. Indeed, when introduced it can actually encourage the bacteria to seek protection in the cystic form. I'll need to talk to my doctor to find out if I should stay on the Flagyl or maybe switch to Tindamax or some other anti-cyst antibiotic, as well as if I should take the Plaquenil at all.<br />
<br />
Unfortunately, I don't know much about this new research beyond what I just wrote. I'm hoping to find out more in the next few days.The Girl With The Sun In Her Headhttp://www.blogger.com/profile/14360533264570531791noreply@blogger.com3tag:blogger.com,1999:blog-7195100009785564367.post-19498882420087239722009-11-13T17:52:00.000-08:002009-11-13T17:52:20.898-08:00Report from LLMD visitI haven't updated much in the last week or two, mostly because I was trying to figure out what the heck was going on with my meds. On October 30, I started doxycycline <i>and </i>switched from one generic brand of ceftriaxone (Rocephin) to another generic brand. Two variables! Pesky.<br />
<br />
Headache, nausea, chest pain, stomach pain, vomiting, tight throat, excessive saliva production. It was a regular laugh riot.<br />
<br />
So I tried eliminating one of the two suspects for a couple of days to figure out which might be causing my troubles. Unfortunately, my experiments did not produce reliable, repeatable data. Sometimes I'd still feel horrible. Sometimes I'd be just fine. No rhyme or reason.<br />
<br />
This was the riddle I presented to my LLMD today. We have a proposed solution. First, I'm going to switch from the new generic ceftriaxone (made by Wockhardt) to the generic ceftriaxone I'd been using previously (made by Sandoz). It's possible that a binder or filler in the powder is giving me grief. I won't get the Sandoz-made kind until next week, and it's going to cost nearly twice as much.<br />
<br />
As for the doxycycline, we're looking at a multiphase approach. First, I'm going to start taking sucralfate to protect my stomach and esophagus. One 1 gram pill, four times a day. Fun. But one of it's most common side effects is <i>bezoar formation</i>. And that's just funny.<br />
<br />
Then I'm going to try taking all 400 mg of doxy at one time, in the morning. (The doxy never bothered me in the morning, only if I took it after, say, 4 PM.) If this works, great.<br />
<br />
It probably won't work. Because 400 mg of oral doxy is a lot at once, and will likely cause vomiting. Still, I'm going to try it. And if it doesn't work, then I'll go back to 200 mg in the morning and 200 mg in the evening. And we'll see if that works. Hopefully the sucralfate will do it's thing and all my troubles will vanish. Ha. Ha. Ha.<br />
<br />
The final medication change I'm making is that I'm going to say good-bye to my longtime friend Flagyl. We had some good times, but it's just been a while and I think it's time to move on. It's not you, Flagyl. It's me. I'm sorry. It's been eleven months, and I think I need something new and fresh in my life. The Lyme bacteria aren't afraid of you anymore. (Read: Resistance to Flagyl might be building and it's time to switch to a different drug.)<br />
<br />
I'm going to start Plaquenil, 200 mg, twice a day. It acts against the cyst form of Lyme. Additionally, it can lower cellular acid levels, which makes doxycycline more effective. Score! And one of it's <br />
<br />
The downside is that it can cause retinitis, so I'll have to get an eye exam every four months to make sure I'm all good. Similarly, I get monthly blood work done to make sure that my body is handling the other drugs OK. This month my labs were simply beautiful. Not a number out of place.The Girl With The Sun In Her Headhttp://www.blogger.com/profile/14360533264570531791noreply@blogger.com0tag:blogger.com,1999:blog-7195100009785564367.post-17859112819987617622009-11-07T12:56:00.000-08:002009-11-07T12:56:27.555-08:00I'm ready for my close upNew hair. New piercings. Fun!<br />
<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh1OkhlEgVJgCSvWi5kWWvyvOS6waGsALlGsCN_IYLVqnIt-ve3pMvxTYhIwi3ZGwKawzidnWM0Sr0Smm0fQ5K42GmvaRuPj7qVOoCdSZ_4OXDhyoC3RpQnD2yZ_n7XW95uTis99HLPBE8/s1600-h/IMG_3021.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh1OkhlEgVJgCSvWi5kWWvyvOS6waGsALlGsCN_IYLVqnIt-ve3pMvxTYhIwi3ZGwKawzidnWM0Sr0Smm0fQ5K42GmvaRuPj7qVOoCdSZ_4OXDhyoC3RpQnD2yZ_n7XW95uTis99HLPBE8/s400/IMG_3021.JPG" /></a><br />
</div>The Girl With The Sun In Her Headhttp://www.blogger.com/profile/14360533264570531791noreply@blogger.com0