Continued from the previous post
In the months before I went to Seattle I had been in the depths of despair, and I went to see a therapist for a little while. When I told her my decision to go see Dr. X, one comment she made stuck with me. She said, “Well, if you have been sick for six years you shouldn’t expect to get better in just a few months. I would think it would take quite some time to reverse what has been going on in your body.”
I don’t know if for other people it has been this way, but while I was the most sick, especially when I didn’t have a diagnosis or any way of making sense of it, I lived with the amorphous idea at the back of my mind that at any moment I would be cured quickly. It wasn’t something that I consciously expected, I certainly worked with doctors and gave them time to help me (I gave one acupuncturist a year before realizing I hadn’t made progress); it was just that it continued to seem so absolutely strange, so alien to me that I couldn’t get up and walk around, that the opposite of this state of affairs, i.e. a simple cure, seemed of course the most normal, natural thing in the world, like water running downhill.
So when this woman said to me it was only logical that it would take some time for me to get better, even with the best doctor, it wasn’t exactly what I wanted to hear. It did, however, bring me down to earth. I realized I had been secretly harboring a childish expectation, and it was time to put it to rest. I would go to Dr. X with an open mind, and I would give her time. I couldn’t expect instant miracles. The plan was for me to spend three months in Kirkland, a suburb of Seattle, getting as much medical care as I could before I returned to DC and continued with treatment I could do at home in DC.
My mother and I arrived at our first day eager and excited. When the appointment finally started, an hour and a half after it was scheduled, we weren’t disappointed. Before I arrived Dr. X had asked me to write out a medical history, starting from before my birth (was their anything while I was in the womb?), and she went over this in detail. She asked a myriad of questions about my illness now, and wrote up a list of tests she wanted me to get done right away. When I told her I was concerned I might still have parasites from my time in Mexico, she called a doctor at the University of Washington with expertise in that area, and asked him what test she should be running for me. These were added to the list.
As an osteopath (OD instead of MD), Dr. X believed the alignment of the bones had an effect on the health of the body, and vice-versa. After the medical history she did a twenty minute physical exam, with an assistant taking notes on the length of my legs, the minute torques in my hips, the tension in my neck and arms, etc. Before she was done she had her receptionist scheduling me to get orthodics and see a dentist to begin an elaborate process to correct a misalignment in my bite, which was causing me all sorts of TMJ-related headaches.*
By the end of that first appointment, I was hooked. No one had ever taken that kind of time with me, cared so much about my symptoms, or made that kind of effort to work with other doctors. When we left I was tired and very hungry—it was close three o’clock and we had arrived at the office at ten am—but I also excited and hopeful once again.
As we ate an extremely late lunch after the appointment, my mother and I talked over events. The most surprising thing had been that Dr. X was extremely overweight. (Just to round out the description, she also had short white hair and a friendly smile.) My mother said despite her weight, Dr. X gave the impression of being strong. I had to agree, she somehow didn’t look unhealthy, although we usually equate obesity with poor health in our society. When it comes to doctors, we expect them to at least look healthy. Perhaps it was Dr. X’s confidence and strength of character that kept us from judging her too quickly.
One thing was clear from our interactions with her: she was going to do things the way she thought was best, ad she didn’t really care what anyone else thought. Her medical practice was radically different from any other I had encountered, and it impressed me that she had the wherewithall to pull it off.
* These things turned out to be fabulous turned out to be fabulous. The dentist made a small appliance that fit over my teeth and was calibrated to make my bite line up in the position that would have my jaw, head and spine as relaxed as possible. My upper body had been locked with tension for years, but I felt the change as soon I started using it. It worked beautifully.
As for the orthodics, once I had them most of the aching in my legs went away. I still tired out very quickly, but I no longer had the immediate sensation when I stood up that my legs just couldn’t handle it. With both the dental appliance and the orthodics, the quality of my tiredness changed. This may not sound like much, but it was. My body was no longer a tense gridlock of aching muscles, day and night. I could actually rest, that is, lie down and feel a sense of peace, my whole being now hummed with the productive work of rest.
For anyone dealing with this kind of chronic fatigue, I suggest looking into orthodics. They are relatively inexpensive and insurance usually covers them. The appliance for my bite was not at all cheap, but worth it if you can afford it and are absolutely miserable with TMJ. This a world away from a normal night-guard any standard dentist will give you. The dentist I saw was Dr. Rhys Spoor.
Wednesday, July 29, 2009
Monday, July 27, 2009
HISTORY: DR. X
Looking back on the eighteen months I spent as Dr. X’s patient, much of it is hard to explain. Those who have been in my position—cripplingly sick for many years without a diagnosis or treatment—might understand. The irrational decisions made by those facing death we tend to forgive. Someone who is facing a lifetime of constant suffering, followed by death, may make decisions that are just as extreme, or just as compromised. There is nothing keeping her from the terrible abyss but hope of a cure, so she searches out one medical solution after another. She will never stop searching, and as the first choices fail she will look further and further afield simply to have hope.
By the time I reached Dr. X, I had been sick for five years; for the last four, standing on my feet was a colossal effort and I spent the vast majority of my time in bed, listening to books on tape. At the start I was twenty six years old, at the end I was thirty one, and I was living in my parents’ house.
The doctor immediately before Dr. X was Dr. Wu, a sixty-something Chinese acupuncturist who read the energy in my meridians with a computer program and a sensor that plugged into his laptop. He spoke little English, but enough to tell me “you don’t worry, I take care you,” as he put twenty or more needles in my body, then draped a sheet over all of them before leaving me to fall asleep for half an hour.
I would leave Dr. Wu’s office with a brown paper bag of dried seed pods, bark and twigs. I boiled these up in a special clay pot, three times for forty-five minutes each, each time pouring off half the brew and adding more water. The final product I kept in the fridge and drank several times a day.
Soon I saw some improvements—sitting up wasn’t quite so exhausting. I felt calmer, clearer-headed, perhaps a little stronger. Towards the end of the three months I tried walking very short distances, then even a few blocks at a very slow pace, and was happy to find that I was alright afterwards.
Then came the day I tried to walk the same short distance and found myself exhausted and aching in a way that was all too familiar for me. I went back to Dr. Wu and tried to explain the problem to him, but he seemed not to understand. There was something fundamental he was missing. If his English were better (or if I spoke Chinese) perhaps I could have explained it. I rested and hoped for a return of that little bit of lost energy, but as weeks passed my despair grew. The only way out I could imagine was death.
I remember crying uncontrollably at this time. I was unable to tell my mother how bleak things were in my mind. All I could say to her was, “I don’t know what I should do. There is nothing left for me to try. What would you do if you were in my position?”
“I would call Dr. P,” she said. “You haven’t been in touch with her for a long time, and she might have some suggestions.”
Dr. P was an extremely kind, slightly absentminded MD, one of the few medical doctors in DC with respect for alternative medicine.
Of all the doctors I had seen, Dr. P had produced the most lab work confirming there was, indeed, something biologically wrong with my body (low nutritional levels, high markers of toxic substances and adrenal function close to zero). She was still far from having a complete picture of what was wrong with me, and all her attempts to treat me had backfired, sending me into week-long relapses. This was no different than other practitioners I’d been to, but when I called her tell her things went wrong she didn’t blame me—and that was different, so I kept working with her. She earned my respect in the end by telling me honestly that she did not know herself what to do. Her first suggestion was for me to go to a doctor in Seattle, but I wasn’t ready to go so far from home, so she told me about alternative therapies in the city. Dr. Wu was the sixth practitioner I had tried since then.
When I called Dr. P that late spring of 2004, having given up all hope on a cure from Dr. Wu, we agreed I’d tried everything in Washington worth trying. She suggested again I go to Seattle. When I told my mother this, she surprised me by saying it was worth considering.
I, on the other hand, was skeptical. I had been to so many doctors, in Mexico where I had first gotten sick, and then here in Washington. I had been to John’s Hopkins University Medical Center. I’d been to doctors praised to high heaven by friends of friends whose symptoms were close to mine. A parade of Western doctors had run tests that turned up nothing. I had tried acupuncture, homeopathy and vitamins, acidophilus and biofeedback, cranial sacral therapy and Nambudripad’s Allergy Elimination Technique. I had even been to a specialist who had wanted to operate on my sinuses, although I had no problem with my sinuses.
And here was the thing: all the doctors I’d been to (with the exception of the sinus guy) offered plausible explanations for my illness. In the initial visit they diagnosed me so well I was sure I had found the answer to my problems at last. And each course of treatment ended much the same way: my body was pushed too far, without any means for recovering from Lyme disease, which was really what was wrong with me, although no one knew it. For all my money and effort, I wound up feeling worse, with my hopes torn to pieces.
After five years of that, why would I go to Seattle to see another doctor who probably didn’t know how to cure me either? Dr. P insisted that she would know how, but I remained doubtful.
A phone call was arranged. As a journalist, I had a list of questions for Dr. X. How many patients with symptoms like mine had she seen? How many patients had she seen who reacted to treatments in the opposite way than what she was expecting? (This was often the case for me.) What would she do if something she tried didn’t work?
For all my questions she had answers that convinced me she was willing to think creatively, if her effort failed she would not simply blame me for it, as most doctors did, but go back and reassess her own work. This was more than anyone had done for me so far.
On the other hand, as a journalist I knew this was her own version of events, and it was always worthwhile to get a different perspective. I asked if I could speak with her patients.
Her office sent me a list of seven patients who had agreed to speak with me. I called them all. Each had gotten nowhere with standard medical care but had made great progress with Dr. X. Some were at the end of their treatment, others had only been with her a few months. Each had at least one symptom that overlapped with mine, and all had good things to say about Dr. X.
One other thing I heard over and over: she is not a normal medical doctor, she will do some unusual things, but if you keep an open mind she will help you.
So it was that my mother and I boarded a plane to Seattle in June of 2004.
This story continued in the next post.
By the time I reached Dr. X, I had been sick for five years; for the last four, standing on my feet was a colossal effort and I spent the vast majority of my time in bed, listening to books on tape. At the start I was twenty six years old, at the end I was thirty one, and I was living in my parents’ house.
The doctor immediately before Dr. X was Dr. Wu, a sixty-something Chinese acupuncturist who read the energy in my meridians with a computer program and a sensor that plugged into his laptop. He spoke little English, but enough to tell me “you don’t worry, I take care you,” as he put twenty or more needles in my body, then draped a sheet over all of them before leaving me to fall asleep for half an hour.
I would leave Dr. Wu’s office with a brown paper bag of dried seed pods, bark and twigs. I boiled these up in a special clay pot, three times for forty-five minutes each, each time pouring off half the brew and adding more water. The final product I kept in the fridge and drank several times a day.
Soon I saw some improvements—sitting up wasn’t quite so exhausting. I felt calmer, clearer-headed, perhaps a little stronger. Towards the end of the three months I tried walking very short distances, then even a few blocks at a very slow pace, and was happy to find that I was alright afterwards.
Then came the day I tried to walk the same short distance and found myself exhausted and aching in a way that was all too familiar for me. I went back to Dr. Wu and tried to explain the problem to him, but he seemed not to understand. There was something fundamental he was missing. If his English were better (or if I spoke Chinese) perhaps I could have explained it. I rested and hoped for a return of that little bit of lost energy, but as weeks passed my despair grew. The only way out I could imagine was death.
I remember crying uncontrollably at this time. I was unable to tell my mother how bleak things were in my mind. All I could say to her was, “I don’t know what I should do. There is nothing left for me to try. What would you do if you were in my position?”
“I would call Dr. P,” she said. “You haven’t been in touch with her for a long time, and she might have some suggestions.”
Dr. P was an extremely kind, slightly absentminded MD, one of the few medical doctors in DC with respect for alternative medicine.
Of all the doctors I had seen, Dr. P had produced the most lab work confirming there was, indeed, something biologically wrong with my body (low nutritional levels, high markers of toxic substances and adrenal function close to zero). She was still far from having a complete picture of what was wrong with me, and all her attempts to treat me had backfired, sending me into week-long relapses. This was no different than other practitioners I’d been to, but when I called her tell her things went wrong she didn’t blame me—and that was different, so I kept working with her. She earned my respect in the end by telling me honestly that she did not know herself what to do. Her first suggestion was for me to go to a doctor in Seattle, but I wasn’t ready to go so far from home, so she told me about alternative therapies in the city. Dr. Wu was the sixth practitioner I had tried since then.
When I called Dr. P that late spring of 2004, having given up all hope on a cure from Dr. Wu, we agreed I’d tried everything in Washington worth trying. She suggested again I go to Seattle. When I told my mother this, she surprised me by saying it was worth considering.
I, on the other hand, was skeptical. I had been to so many doctors, in Mexico where I had first gotten sick, and then here in Washington. I had been to John’s Hopkins University Medical Center. I’d been to doctors praised to high heaven by friends of friends whose symptoms were close to mine. A parade of Western doctors had run tests that turned up nothing. I had tried acupuncture, homeopathy and vitamins, acidophilus and biofeedback, cranial sacral therapy and Nambudripad’s Allergy Elimination Technique. I had even been to a specialist who had wanted to operate on my sinuses, although I had no problem with my sinuses.
And here was the thing: all the doctors I’d been to (with the exception of the sinus guy) offered plausible explanations for my illness. In the initial visit they diagnosed me so well I was sure I had found the answer to my problems at last. And each course of treatment ended much the same way: my body was pushed too far, without any means for recovering from Lyme disease, which was really what was wrong with me, although no one knew it. For all my money and effort, I wound up feeling worse, with my hopes torn to pieces.
After five years of that, why would I go to Seattle to see another doctor who probably didn’t know how to cure me either? Dr. P insisted that she would know how, but I remained doubtful.
A phone call was arranged. As a journalist, I had a list of questions for Dr. X. How many patients with symptoms like mine had she seen? How many patients had she seen who reacted to treatments in the opposite way than what she was expecting? (This was often the case for me.) What would she do if something she tried didn’t work?
For all my questions she had answers that convinced me she was willing to think creatively, if her effort failed she would not simply blame me for it, as most doctors did, but go back and reassess her own work. This was more than anyone had done for me so far.
On the other hand, as a journalist I knew this was her own version of events, and it was always worthwhile to get a different perspective. I asked if I could speak with her patients.
Her office sent me a list of seven patients who had agreed to speak with me. I called them all. Each had gotten nowhere with standard medical care but had made great progress with Dr. X. Some were at the end of their treatment, others had only been with her a few months. Each had at least one symptom that overlapped with mine, and all had good things to say about Dr. X.
One other thing I heard over and over: she is not a normal medical doctor, she will do some unusual things, but if you keep an open mind she will help you.
So it was that my mother and I boarded a plane to Seattle in June of 2004.
This story continued in the next post.
Wednesday, July 22, 2009
LET'S GET COUNTED
The California Lyme Disease Association is conducting a survey to help Lorraine Johnson, (JD, MBA) in her testimony before a panel to set new Lyme treatment guidelines. Up to now the official Lyme treatment guidelines have been terrible, spreading misinformation and promoting ignorance about the disease.
That could change, thanks to a Connecticut court case. Ms. Johnson is a Lyme patient advocate who will try to give a complete picture of what Lyme is really like. Help her by filling out this survey. Click here.
That could change, thanks to a Connecticut court case. Ms. Johnson is a Lyme patient advocate who will try to give a complete picture of what Lyme is really like. Help her by filling out this survey. Click here.
Tuesday, July 21, 2009
KEEP CALLING
If you have any doubt about where all the money that should have gone to cover your antibiotics and doctor's visits went, read here.
It turns out that Max Baucus, Democratic Senator from Montana and Chairman of the Senate Finance Committee, has been accepting campaign contributions from BlueCross BlueShield, the same people I was on the phone with last week, the same people who have been denying my health care coverage for years, not to mention throwing out my claims forms, etc, etc.
This company does not operate in Montana, and has no business giving this guy money except to encourage him to prevent meaningful health care reform from happening.
I just called his office and told them I think Mr. Baucus should support meaningful health care reform with a public option. The receptionist said thank you, he would pass the message along.
It's not much, but it's at least something. Let's call in and let him know sick people from across the country want him to do something to help them!
Here's the number: 202-224-2651
BlueCross Blue Shield and all the other insurance companies have all the money they've skinned off of us, and they have used it to dole out $3 million to Max Baucus over five years. (It truly pisses me off!) The system is corrupt, we all know that. But let's call anyway. Obama is putting everything he's got into this, let's show what support we can!
Call your representative, call you Senator, and for goodness sake, call Max Baucus, because chances are good he's accepted money from your insurance company, too! The deck is stacked against us, but if health reform doesn't go through, do you want to have to accept that knowing you didn't even call???
It turns out that Max Baucus, Democratic Senator from Montana and Chairman of the Senate Finance Committee, has been accepting campaign contributions from BlueCross BlueShield, the same people I was on the phone with last week, the same people who have been denying my health care coverage for years, not to mention throwing out my claims forms, etc, etc.
This company does not operate in Montana, and has no business giving this guy money except to encourage him to prevent meaningful health care reform from happening.
I just called his office and told them I think Mr. Baucus should support meaningful health care reform with a public option. The receptionist said thank you, he would pass the message along.
It's not much, but it's at least something. Let's call in and let him know sick people from across the country want him to do something to help them!
Here's the number: 202-224-2651
BlueCross Blue Shield and all the other insurance companies have all the money they've skinned off of us, and they have used it to dole out $3 million to Max Baucus over five years. (It truly pisses me off!) The system is corrupt, we all know that. But let's call anyway. Obama is putting everything he's got into this, let's show what support we can!
Call your representative, call you Senator, and for goodness sake, call Max Baucus, because chances are good he's accepted money from your insurance company, too! The deck is stacked against us, but if health reform doesn't go through, do you want to have to accept that knowing you didn't even call???
Thursday, July 16, 2009
WORKING THE PHONES
So this morning I had to call the insurance company. I went into it with the best, most positive attitude. Yesterday I'd sat down and read through my plan description for an hour, and was pleased to find that the latest round of denials (of all my prescription claims) was completely unfounded. My prescriptions are clearly covered. I was stoked up and ready to send in my appeal.
Before I can send in my official grievance, I am required to call Member Services because "usually concerns can be cleared up by just gathering more information."
That is, you call them and ask why your claim has been denied when clearly it should be covered, and some pitiable person with a lousy job tells you it's all perfectly reasonable for your claims to be denied and you are completely mistaken to think otherwise. Just one more step in the company's attempt to keep from reimbursing you.
It's all just part of the game, I've been through it many times before, and I know the poor person at the other end of phone is not out to get me, she just has a terrible job that she probably needs very badly, or she would have quit long ago.
INDIGNATION
Usually I pride myself on not losing it with this illness. Of course every now and then I do lose it-- I cry and scream and even throw things, but these occasions are rare, and getting rarer. Long ago I figured out that being angry about being sick is just a waste of energy. I'd rather enjoy all the things that are great in my life and deal with the myriad elements of sickness as best I can.
So why, two minutes into this phone call was I furious? I was shouting at this poor woman on the other end of the line, at a call center in Kansas, and I was close to tears. Tears of frustration, not just at the phone call, but for the ten years of my life lost to illness and the countless indignities I have to go through. Break out the violins!
Perhaps it was how nice and reasonable this woman sounded, like she really was a nice, nice person, the kind of person who would bring me raspberries from her garden if I lived nearby-- even while she was describing to me an entirely different set of rules and regulations that were nowhere to be found in my health care plan, and in this parallel universe where the prescription benefits administrators live none of the medicine that treats Lyme is covered, especially not the injectable kind, which of course is the kind I'm on like crazy and costs a fortune. She seemed puzzled that I didn't know about all these rules and regulations in her world, but ultimately she could do nothing. She couldn't even give me the address where I should send my appeal-- she told me to call a different number to find that. (Of course at the second number they told me to call the first again, but that's a different story.)
THE SYSTEM
In the whole discussion and debate about health care and the insurance industry, the thing that makes no sense to me is how people keep using the word "system" to describe the current state of health care in our country. I just would like to say, what system??? Perhaps Medicare and Medicaid have a system, but as for the rest of it, from what I can see and what I've experienced, there is no system. There is just a horse manure everywhere you go, with a few truly good people in the midst of it, such as Dr. Ross and Carolyn Humphreys, managing to help a few of their fellow humans.
When I hung up the phone I felt terrible for yelling at that poor woman. I'd already apologized to her several times before I hung up, having realized how badly I'd behaved. The worst part of it is I should be able to call up the executives running my insurance company and scream at them for an hour. I don't know if it would be productive, but at least my anger wouldn't be misdirected.
Instead I called my Congressman's office, and told the sweet woman who answered the phone that they should be sure they were working as hard as they could to make Meaningful Health Care Reform come true, because my insurance company was making me miserable. She asked my zip code so she could chalk up my call in the day's tally, and told me how sorry she was I was having a terrible time, and then we said goodbye.
I felt a little better.
DEMOCRACY AT WORK (THAT MEANS YOU!)
So here is my plea: Call your congressional representative.
If you are as miserable as I am with this or even if you aren't but you know me or you know someone else who goes through this stuff with the so-called system. Call and keep the pressure up so this legislature goes through.
It's not a big deal to call. They have people there whose job it is just to answer the phone when constituents call, and the best way to let them know you want change is by calling. Obama is the closest thing to a demi-god I have witnessed in my thirty-six years, but he can't do it all alone. We need to help.
Before I can send in my official grievance, I am required to call Member Services because "usually concerns can be cleared up by just gathering more information."
That is, you call them and ask why your claim has been denied when clearly it should be covered, and some pitiable person with a lousy job tells you it's all perfectly reasonable for your claims to be denied and you are completely mistaken to think otherwise. Just one more step in the company's attempt to keep from reimbursing you.
It's all just part of the game, I've been through it many times before, and I know the poor person at the other end of phone is not out to get me, she just has a terrible job that she probably needs very badly, or she would have quit long ago.
INDIGNATION
Usually I pride myself on not losing it with this illness. Of course every now and then I do lose it-- I cry and scream and even throw things, but these occasions are rare, and getting rarer. Long ago I figured out that being angry about being sick is just a waste of energy. I'd rather enjoy all the things that are great in my life and deal with the myriad elements of sickness as best I can.
So why, two minutes into this phone call was I furious? I was shouting at this poor woman on the other end of the line, at a call center in Kansas, and I was close to tears. Tears of frustration, not just at the phone call, but for the ten years of my life lost to illness and the countless indignities I have to go through. Break out the violins!
Perhaps it was how nice and reasonable this woman sounded, like she really was a nice, nice person, the kind of person who would bring me raspberries from her garden if I lived nearby-- even while she was describing to me an entirely different set of rules and regulations that were nowhere to be found in my health care plan, and in this parallel universe where the prescription benefits administrators live none of the medicine that treats Lyme is covered, especially not the injectable kind, which of course is the kind I'm on like crazy and costs a fortune. She seemed puzzled that I didn't know about all these rules and regulations in her world, but ultimately she could do nothing. She couldn't even give me the address where I should send my appeal-- she told me to call a different number to find that. (Of course at the second number they told me to call the first again, but that's a different story.)
THE SYSTEM
In the whole discussion and debate about health care and the insurance industry, the thing that makes no sense to me is how people keep using the word "system" to describe the current state of health care in our country. I just would like to say, what system??? Perhaps Medicare and Medicaid have a system, but as for the rest of it, from what I can see and what I've experienced, there is no system. There is just a horse manure everywhere you go, with a few truly good people in the midst of it, such as Dr. Ross and Carolyn Humphreys, managing to help a few of their fellow humans.
When I hung up the phone I felt terrible for yelling at that poor woman. I'd already apologized to her several times before I hung up, having realized how badly I'd behaved. The worst part of it is I should be able to call up the executives running my insurance company and scream at them for an hour. I don't know if it would be productive, but at least my anger wouldn't be misdirected.
Instead I called my Congressman's office, and told the sweet woman who answered the phone that they should be sure they were working as hard as they could to make Meaningful Health Care Reform come true, because my insurance company was making me miserable. She asked my zip code so she could chalk up my call in the day's tally, and told me how sorry she was I was having a terrible time, and then we said goodbye.
I felt a little better.
DEMOCRACY AT WORK (THAT MEANS YOU!)
So here is my plea: Call your congressional representative.
If you are as miserable as I am with this or even if you aren't but you know me or you know someone else who goes through this stuff with the so-called system. Call and keep the pressure up so this legislature goes through.
It's not a big deal to call. They have people there whose job it is just to answer the phone when constituents call, and the best way to let them know you want change is by calling. Obama is the closest thing to a demi-god I have witnessed in my thirty-six years, but he can't do it all alone. We need to help.
Tuesday, July 14, 2009
ICE
I have a sneaking suspicion that I am the only person out there giving myself subcutaneous shots of heparin to treat Lyme disease. I know I'm in the minority when it comes to Rocephin by injection instead of IV. I'm writing this anyway, in case there is some kindred soul out there, trolling the internet for the one-long lost person who also shoots up these drugs.
I love my injections. Not the part with the needle going into my flesh, but I love what the medications do for me.
I loved heparin from my very first time, four years ago, when I felt a warm tingling washing away the ache in my legs and fell into a rich, deep sleep a half hour later. I don’t fall asleep right after my injection anymore, but it keeps my blood circulating, makes me wonderfully relaxed, and allows me to do good things, like walking, for instance. When I miss my injection my shoulders stiffen up, my hands and feet get chilly and I don’t sleep that well.
(Apparently besides thinning my too-thick blood, heparin also has a therapeutic effect on the Lyme itself. According to my MD, Dr. Martin Ross, (and I'm paraphrasing wildly here) there is a kind of protective sack around the really hard to treat Lyme, and Heparin helps break this force-field down so the antibiotics can more easily get at the spirochete and destroy it.)
Rocephin I wasn’t quite so sure about at the start, but on the third day I discovered that moving around-- not lying down as I’d been doing—right after the injection got rid of the pain and also the despair that had been taking over. Since then I think Rocephin is great. On Rocephin I’ve cut down from two naps a day to one. I feel more solid and more energetic. I am working better, walking better, feeling better. I don’t want to miss a single dose.
Both these injections cause bruising, each in their own special way. At first it’s negligible, but over time the bruises build up. The best thing is to get on them right away, before they get the upper hand.
I used to ice right before and right after I injected my heparin, until naturopath Amy Derksen told me it was better to ice at a different time, so my body would absorb the heparin more quickly after I’d shot it into my fat. I’ve taken the same approach with the Rocephin—walk around, get it circulating. Ice later if you remember.
That means on a good day, when I'm home and can remember to do it, I shove ice packs down my pants. Generally I do this in private, although the baggy shirts I've been wearing to protect myself from the sun allow me to walk around outside with a surreptitious ice pack on my hip. Sometimes all the crazy things I do to get over Lyme disease just dovetail in the most marvelous way!
Besides the ice there is also Arnica, the very famous homeopathic, available as a topical cream at any self-respecting co-op or health food store.
The Rocephin also creates swelling and tough, lumpy spots under my skin that are sore when I touch them, lie on my side or do certain yoga poses. Just a few days ago I discovered I can massage these away. To do this a lotion that is thicker than your garden-variety moisturizer is helpful, something that is mostly shea butter or cocoa butter, i.e. solid at room temperature. (Don’t use Vaseline—that stuff is made out of petroleum!) Once the shea butter is on there, press down gently but firmly and move your fingers around until you feel the nubbly texture in the swollen area. You can then use the same gentle pressure to massage these little lumps away. I do this before bed and wake up in the morning happily de-lumped and looking forward with delight to my next injection.
I love my injections. Not the part with the needle going into my flesh, but I love what the medications do for me.
I loved heparin from my very first time, four years ago, when I felt a warm tingling washing away the ache in my legs and fell into a rich, deep sleep a half hour later. I don’t fall asleep right after my injection anymore, but it keeps my blood circulating, makes me wonderfully relaxed, and allows me to do good things, like walking, for instance. When I miss my injection my shoulders stiffen up, my hands and feet get chilly and I don’t sleep that well.
(Apparently besides thinning my too-thick blood, heparin also has a therapeutic effect on the Lyme itself. According to my MD, Dr. Martin Ross, (and I'm paraphrasing wildly here) there is a kind of protective sack around the really hard to treat Lyme, and Heparin helps break this force-field down so the antibiotics can more easily get at the spirochete and destroy it.)
Rocephin I wasn’t quite so sure about at the start, but on the third day I discovered that moving around-- not lying down as I’d been doing—right after the injection got rid of the pain and also the despair that had been taking over. Since then I think Rocephin is great. On Rocephin I’ve cut down from two naps a day to one. I feel more solid and more energetic. I am working better, walking better, feeling better. I don’t want to miss a single dose.
Both these injections cause bruising, each in their own special way. At first it’s negligible, but over time the bruises build up. The best thing is to get on them right away, before they get the upper hand.
I used to ice right before and right after I injected my heparin, until naturopath Amy Derksen told me it was better to ice at a different time, so my body would absorb the heparin more quickly after I’d shot it into my fat. I’ve taken the same approach with the Rocephin—walk around, get it circulating. Ice later if you remember.
That means on a good day, when I'm home and can remember to do it, I shove ice packs down my pants. Generally I do this in private, although the baggy shirts I've been wearing to protect myself from the sun allow me to walk around outside with a surreptitious ice pack on my hip. Sometimes all the crazy things I do to get over Lyme disease just dovetail in the most marvelous way!
Besides the ice there is also Arnica, the very famous homeopathic, available as a topical cream at any self-respecting co-op or health food store.
The Rocephin also creates swelling and tough, lumpy spots under my skin that are sore when I touch them, lie on my side or do certain yoga poses. Just a few days ago I discovered I can massage these away. To do this a lotion that is thicker than your garden-variety moisturizer is helpful, something that is mostly shea butter or cocoa butter, i.e. solid at room temperature. (Don’t use Vaseline—that stuff is made out of petroleum!) Once the shea butter is on there, press down gently but firmly and move your fingers around until you feel the nubbly texture in the swollen area. You can then use the same gentle pressure to massage these little lumps away. I do this before bed and wake up in the morning happily de-lumped and looking forward with delight to my next injection.
Sunday, July 12, 2009
IT'S WORTH IT
Last fall, The Poet and I took an overnight trip to nearby Vashon Island. We had scarcely travelled together before that, given how sick I’d been and how The Poet eats up his vacation on trips to Egypt. I don’t remember how I got the idea of the weekend away into my head—I must have decided it would be fun to see some of the beautiful spots outside Seattle I’d heard so much about. It was pretty last minute, so I spent a couple hours trolling the internet and calling around for an available room. I also spent an hour and a half packing my medicine, injection gear, clothes, some back-up wheat free food and my infra-red mat for sleeping. When we arrived at the bed and breakfast I spent another hour unpacking it all.
While we were away I still had to take my two naps per day, do injections, keep track of taking my myriad of pills (harder to do when they’re not in the usual spots around the apartment) and worry if I would be able to eat what food came my way or able to sleep on sheets washed in detergent I would most likely be allergic to. In the end that didn’t matter—I tried to sleep next to The Poet for about half an hour on the queen sized bed, but he has a tendency to kick anyone in proximity to him while he sleeps, so I ended up spreading my far-infra-red body matt on the floor and using my backpack as a pillow. I woke up feeling pretty stiff, then had to worry about doing my injection and drinking down medicinal liquids before I made it down to breakfast, then back upstairs to pack all my stuff up before the checkout time.
We spent the remainder of the day walking through the hilly grounds around the B&B, then exploring the island. The trip was so short that by the time I was home and resettled it seemed the ratio of planning, packing, napping and travel to leisure time was 3:1.
The Poet, on other hand was delighted with the excursion. He frolicked on a sandy beach and insisted on wearing his socks to wade through the chilly surf to a beckoning sand bar. Such a simple change of scene was magic for him; he returned to Seattle ebullient. I, on the other hand, felt worn out from the strain of it all. Couldn’t we be just as happy at home, with all Seattle had to offer and so much less hassle?
So I gave up on traveling. I decided the only trip really worth taking was home to my family, where I know what food I will be eating and what bed I will be sleeping in, and where can stay for three weeks without racking up a huge bill. Otherwise, I told myself, I could be perfectly happy at home. As Emily Dickinson wrote:
There is no Frigate like a Book
To take us Lands away
Nor any Coursers like a Page
Of prancing Poetry--
This Travers may the Poorest take
Without oppress of Toll--
How humble is the Chariot
That bears the Human soul
True that, until at last the Human soul feels it will Scream if has to look at the same white walls of the same tiny Apartment for yet another Day, no matter how good a Book said Human soul might be reading.
So it was that a few weeks ago I found myself casting around for anywhere we could go at the last minute for two nights. We ended up in Portland. Not surprisingly, given my travel record, I had never been there.
Yes, I spent forever packing, and unpacking, and even ended up missing taking some of my supplements at the right time. Expecting the floral scented sheets to be sickening (they were), I brought my own pillowcase and sheets to throw on top of the hotel linens. To my surprise, The Poet was moody on the first day, as he really wanted to go to a beach and didn’t find being in another city that exciting.
I myself had a glorious time. Yes, Portland isn’t all that different from Seattle, except there is no sales tax. There are also many fewer hills, so I could walk all I wanted without aggravating my tendonitis. But the best part was just to be somewhere different, with no dishes to wash or dinner to cook or garbage to take out.
By the second day The Poet had relaxed a bit, and we had several truly good meals, went to Powell’s books and did some unexpected things like stopping in the 3D Museum and riding a Ferris Wheel.
At age 16 I went to Costa Rica to learn Spanish, at 20 I boarded a plane for France and at 21 another to Buenos Aires. At 36 climbing aboard a ferris wheel in Oregon almost felt like more adventure than I could handle. I was worried that the ride would be too fast—I kid you not. This is how dull my life has become, but the upside was I could get a big thrill from riding a ferris wheel. We shrieked and laughed and marveled at the view.
I’m not sure if there ever was a trip in my whole life that I appreciated so much as the one to Portland. Before my diagnosis, before my treatment, I could not have dreamed of such a trip—three hours on the highway for starters, then lugging bags up and down stairs to the hotel room and walking around the city most of the day. But it was more than just another marker of how much stronger I am. The Poet and I both left Seattle crabby and burned out, and came home happy with ourselves and happy with each other, and it has lasted. With all due respect to Emily Dickinson, there is no frigate like the Honda Civic.
Friday, July 10, 2009
TWO YEARS ON ANTIBIOTICS
In early July 2007 I swallowed my first antibiotic pill to treat Lyme disease. At the time I had been sick with Lyme for at least seven years, probably longer, probably nine or more.
I spent most of those years lying in bed, gathering up tiny wisps of energy by means of elaborate breathing exercises, and pushing the wisps into a ball, so I could sit up for an hour a day and draw, then collapse back onto the nearest couch and start marshalling my breaths all over again. To pass the time I listened to NPR, and then every single book on tape I could get my hands on. Driving was too much, reading was too much, the noise inside a baseball stadium was too much. At times even walking to the kitchen was too much.
I stood on my feet only with trepidation, knowing that within seconds the dead feeling would be there, in my lower legs, and if I let it go on too long it would creep up my calves to my thighs and then the rest of my body, until there was nothing to do but cry from the pain of it and no way to get out of its stranglehold, not even with the most byzantine breathing or the most glorious meditation, no way besides waiting it out for the next few miserable days, in bed and aching, until brief moments of relief would come and go and coalesce into the bliss of just feeling OK, and I had one more chance to stay inside the lines, repentant now for whatever it was I’d tried to do—make a cake or walk over to the neighbors—and I would start gathering my energy again, keeping my sights low, thankful for my hour when I could just sit up and draw or sew.
And now here I am, after two years on antibiotics. I can walk anywhere I like, go the gym, spend the whole morning shopping and teach David to play baseball in the afternoon. I can read for hours and go to a ballgame. I cook dinner and grocery shop and clean the house, and at times I even remember to be grateful that I can do these last three.
When I first saw Dr. Ross and he told me I had Lyme disease, he said the antibiotic treatment would last two to three years. It seems at this point it will be three. Despite all the many things I can do after two years, there are quite a few that are still not possible. The main one is just get through an entire day without downtime and a nap. The other is count on a good night’s sleep. One huge change since I started the antibiotic Rocephin six weeks ago is I can function quite well on just seven or even six hours of sleep, so the insomnia is not the source of misery it once was.
Because of the Lyme-related tendonitis that flared up six months ago, there is a whole range of physical activity that is off limits to me, the ones I particularly love, like dancing and jumping on the mini-trampoline and walking up hills fast. But all in good time, I tell myself, I will be able to do anything I want.
There is one last thing that has not unfolded quite as I had hoped. As I started the antibiotics I knew it would be tough. I was right: there are myriad prescriptions to keep track of, and herbal drops to take and special drinks mixed up and a battery of supplements to organize. On top of that I find I need to go to the sauna every few days and take long walks and do yoga daily so my lymph drains. I have physical therapy and myofascial release therapy for the tendonitis and then the regular doctor's appointments.
None of these things is that bad, in fact some of them bring me a kind of mind-numbing enjoyment. None of them is optional either, and added all together they come out practically to infinity and there is scarcely an hour in the day when I can read, or write, and drawing is a thing of the past.
This is not what I had anticipated, not at least for year three. I had somehow told myself that as Lyme loosed its grip on my physical self, I would be able to write. At this point in the timeline I envisioned myself writing perhaps two to three hours a day, if not more. In fact, I saw it as a sort of heavenly time when although I didn’t have the stamina to go out and hold down a job, I would be happily at home, typing and thinking and taking blissful naps.
What I didn’t reckon on was that being able to write and having time to write are two entirely different things. Lyme may not be running my body anymore, but it is still running my life.
It’s a pretty weak complaint: not that my fantasy of recovering from Lyme didn’t come true, but that my fantasy of what it would be like while I was recovering from Lyme didn’t come true.
As for the first fantasy, I am far from giving up on that.
THE POET
A special shout out goes to The Poet on this post. He and my mom have both been there for me when I needed them the most, my heroic mother during those years spent in bed. But these last two years it has been The Poet who has lived with me, who agreed I should move to his apartment before I started the antibiotics, who didn’t have to sign up when he went on that first date with me, who could have backed out any time, like when the Plaquenil made me hysterical or when I asked him for one more ride to the doctor, or for someone to give me an injection in the butt every day, he could have said 'enough.' Instead has stayed right where he is, has never flinched.
I spent most of those years lying in bed, gathering up tiny wisps of energy by means of elaborate breathing exercises, and pushing the wisps into a ball, so I could sit up for an hour a day and draw, then collapse back onto the nearest couch and start marshalling my breaths all over again. To pass the time I listened to NPR, and then every single book on tape I could get my hands on. Driving was too much, reading was too much, the noise inside a baseball stadium was too much. At times even walking to the kitchen was too much.
I stood on my feet only with trepidation, knowing that within seconds the dead feeling would be there, in my lower legs, and if I let it go on too long it would creep up my calves to my thighs and then the rest of my body, until there was nothing to do but cry from the pain of it and no way to get out of its stranglehold, not even with the most byzantine breathing or the most glorious meditation, no way besides waiting it out for the next few miserable days, in bed and aching, until brief moments of relief would come and go and coalesce into the bliss of just feeling OK, and I had one more chance to stay inside the lines, repentant now for whatever it was I’d tried to do—make a cake or walk over to the neighbors—and I would start gathering my energy again, keeping my sights low, thankful for my hour when I could just sit up and draw or sew.
And now here I am, after two years on antibiotics. I can walk anywhere I like, go the gym, spend the whole morning shopping and teach David to play baseball in the afternoon. I can read for hours and go to a ballgame. I cook dinner and grocery shop and clean the house, and at times I even remember to be grateful that I can do these last three.
When I first saw Dr. Ross and he told me I had Lyme disease, he said the antibiotic treatment would last two to three years. It seems at this point it will be three. Despite all the many things I can do after two years, there are quite a few that are still not possible. The main one is just get through an entire day without downtime and a nap. The other is count on a good night’s sleep. One huge change since I started the antibiotic Rocephin six weeks ago is I can function quite well on just seven or even six hours of sleep, so the insomnia is not the source of misery it once was.
Because of the Lyme-related tendonitis that flared up six months ago, there is a whole range of physical activity that is off limits to me, the ones I particularly love, like dancing and jumping on the mini-trampoline and walking up hills fast. But all in good time, I tell myself, I will be able to do anything I want.
There is one last thing that has not unfolded quite as I had hoped. As I started the antibiotics I knew it would be tough. I was right: there are myriad prescriptions to keep track of, and herbal drops to take and special drinks mixed up and a battery of supplements to organize. On top of that I find I need to go to the sauna every few days and take long walks and do yoga daily so my lymph drains. I have physical therapy and myofascial release therapy for the tendonitis and then the regular doctor's appointments.
None of these things is that bad, in fact some of them bring me a kind of mind-numbing enjoyment. None of them is optional either, and added all together they come out practically to infinity and there is scarcely an hour in the day when I can read, or write, and drawing is a thing of the past.
This is not what I had anticipated, not at least for year three. I had somehow told myself that as Lyme loosed its grip on my physical self, I would be able to write. At this point in the timeline I envisioned myself writing perhaps two to three hours a day, if not more. In fact, I saw it as a sort of heavenly time when although I didn’t have the stamina to go out and hold down a job, I would be happily at home, typing and thinking and taking blissful naps.
What I didn’t reckon on was that being able to write and having time to write are two entirely different things. Lyme may not be running my body anymore, but it is still running my life.
It’s a pretty weak complaint: not that my fantasy of recovering from Lyme didn’t come true, but that my fantasy of what it would be like while I was recovering from Lyme didn’t come true.
As for the first fantasy, I am far from giving up on that.
THE POET
A special shout out goes to The Poet on this post. He and my mom have both been there for me when I needed them the most, my heroic mother during those years spent in bed. But these last two years it has been The Poet who has lived with me, who agreed I should move to his apartment before I started the antibiotics, who didn’t have to sign up when he went on that first date with me, who could have backed out any time, like when the Plaquenil made me hysterical or when I asked him for one more ride to the doctor, or for someone to give me an injection in the butt every day, he could have said 'enough.' Instead has stayed right where he is, has never flinched.
Thursday, July 2, 2009
BACK TO MYSELF AGAIN
Phew. Yesterday was insane. After writing the last post I drank down some Vitamin C in hopes of cleaning out my system. Made myself more nauseated instead. I got dressed and got in the car for a previously scheduled doctor's appointment. I felt worse and worse as I drove, and was quite sure I shouldn't be on the road. My teeth were chattering from the nausea and pain as I pulled up to the office-- so much for assuming I'd be better soon.
I actually didn't know nausea could be that excrutiating. In the past nausea has just been nausea, if it got worse it was only until you threw up. But in this case I wasn't nauseous because of anything in my stomach, so it just ricocheted around my body until I felt every second like I was about to explode. That lasted around an hour.
Dr. Ross suggested extra magnesium to get calm down the muscle spasm in my head, and agreed that it was probably related to die-off and an extra-long session of myo-fascial release that had increased the circulation to my head. He suggested a glutathione IV if the nausea didn't improve.
I had texted The Poet on my way into the appointment, and when I walked out he was already in the waiting room, ready to drive me home. Hooray for The Poet, my hero! He is keeping the streets of Seattle safe from half-blind, nauseated drivers.
At home I forced myself to swallow down chlorella and magnesium glycinate, then figured out that if I lay on the couch without moving a muscle the nausea disappeared. I fell asleep.
When I woke up I called Jeanette, who does a relaxation/nervous system therapy called SRT. We did a session over the phone, and at the end of the hour the nauseau was about 25% of what it had been, much to my relief. I was well enough to get David from camp and drive us both home. Normally we don't watch much TV, but yesterday we saw the whole baseball game and the second half of Star Wars Episode IV and everyone went to bed early. I woke up feeling much, much better.
P.S. Had an appointment with Amy Derksen today. She thought the episode was set off by the visiting doctor who increased one of my supplements (P5P) a couple weeks ago. This caused me to detox heavy metals a little too quickly. The chlorella and the magnesium were the right things to take, and I have dropped the P5P for the time being.
I actually didn't know nausea could be that excrutiating. In the past nausea has just been nausea, if it got worse it was only until you threw up. But in this case I wasn't nauseous because of anything in my stomach, so it just ricocheted around my body until I felt every second like I was about to explode. That lasted around an hour.
Dr. Ross suggested extra magnesium to get calm down the muscle spasm in my head, and agreed that it was probably related to die-off and an extra-long session of myo-fascial release that had increased the circulation to my head. He suggested a glutathione IV if the nausea didn't improve.
I had texted The Poet on my way into the appointment, and when I walked out he was already in the waiting room, ready to drive me home. Hooray for The Poet, my hero! He is keeping the streets of Seattle safe from half-blind, nauseated drivers.
At home I forced myself to swallow down chlorella and magnesium glycinate, then figured out that if I lay on the couch without moving a muscle the nausea disappeared. I fell asleep.
When I woke up I called Jeanette, who does a relaxation/nervous system therapy called SRT. We did a session over the phone, and at the end of the hour the nauseau was about 25% of what it had been, much to my relief. I was well enough to get David from camp and drive us both home. Normally we don't watch much TV, but yesterday we saw the whole baseball game and the second half of Star Wars Episode IV and everyone went to bed early. I woke up feeling much, much better.
P.S. Had an appointment with Amy Derksen today. She thought the episode was set off by the visiting doctor who increased one of my supplements (P5P) a couple weeks ago. This caused me to detox heavy metals a little too quickly. The chlorella and the magnesium were the right things to take, and I have dropped the P5P for the time being.
Wednesday, July 1, 2009
The Herxheimer Reaction
Here it is, the Herx. After two years on antibiotics, I've never had a full blown one like I've been having over the past few days. Splitting headaches and nausea. This is no fun.
I'm going to try some extra tumeric capsules, although the thought of swallowing anything now daunting.
I'm going to try some extra tumeric capsules, although the thought of swallowing anything now daunting.
Subscribe to:
Posts (Atom)
