The snakes of depression, anxiety, hopelessness seem to have slithered into my life again. They have come many times over the years. Sometimes the bite is severe and other times I can just be aware of their presence and somehow manage. To be going through Lyme treatment and the associated side effects of the bacteria dying in the brain at the same time as my week of PMS (when the snakes like to come) feels like too much. I wonder if finally I will get bitten by a rattle snake and be put out of my misery.
Then the reality hits that the snakes are not really there, nor is the misery. There needn't be a cure for an imaginary snake bite. All I have to do is remind myself again and again that I am still the same person this week as I was last week. I just happen to be living in a "as though" snake pit at the moment. I know all the cliches, "This too shall pass. Look on the bright side." Blah, Blah, Blah. I can even one up that since I have been studying Vedanta for years. "You are the limitless happiness that upholds the sadness." I have the same response. Blah, Blah, Blah. I know on weeks like this it is just about survival. Putting one foot in front of the other, staying as present as possible, self-care, etc. When you feel as if the giant cobra snake is squeezing the life out of you self-care just doesn't seem feasible. I think I have to do more than just have an intention to use the self-care tools I know that have worked in the past. Drastic times call for drastic measures. I think it is time for a list....
1) Make fresh herbal tea from the garden
2) Pick roses (focusing on the beauty and not the black spot)
3) Lay in the hammock and read or just listen to the birds
4) Sauna and hot tub (since I am blessed to have both)
5) A leisurely walk with the dog
6) A trip to the rose garden with my daughter
7) Call my friend to help me buy flowers and plant them in my two empty beds
8) Listen to inspirational guided meditations
9) Gentle yoga
10) Back Flower Essences
11) Finally open the deck of inspirational cards my co-worker loaned me
12) Pray in the beautiful shrine that happens to be conveniently located in my backyard
13) Make lavender wands with my daughter
14) Fill in a mandala in the coloring book
15) Pick fresh herbs to dry
16) Make yummy food from the fresh veggies and herbs in the garden
I must say I feel calmer and less "snake infested" just typing this list. That was the goal. Now time to pick something of the list!
Friday, July 15, 2011
Thursday, July 14, 2011
How Many Spoons Today?
To answer that question, I am very low on spoons today. I will explain that in a moment, but first a little aside.
My husband sent me this picture as a present last night. I have always associated Borage with one of it's medicinal qualities - courage. Borage for courage. I can use a major helping of that today!
I started writing this post last night so I guess I will go ahead with it. Not inspired to write today.
It is interesting how many people tell me how much better I am looking lately. On one hand that is encouraging. Apparently for months I was this awful pasty color. It is nice to know I look alive again.
One thing to remember is just because someone looks "good" doesn't mean they feel good. It may mean it is better day or it may mean they are just really good at faking it. The longer one feels sick the better one gets at faking it, especially if your "lousy" is still lousy but a little less lousy than the lousiest of days.
I recently was gifted with a story and an analogy that I related to so much. It is called the Spoon Theory. Please check it out: http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf
I like that the website is called "But you don't look sick." I can really relate to this. There are some days that it is so obvious how I feel, but most of the time you probably wouldn't have any idea. This is both a blessing and a curse in some ways. In the healing process I am coming to both accept this body as it is and also visualize it doing things and feeling ways that I haven't imagined in years. I like to visualize walking a half-marathon or climbing a huge mountain. Heck, walking for more then 15 minutes would be just as big an accomplishment at the moment! I know I will get there. I just need to have patience, visualize this treatment working and trust the power of this body to heal.
I must say that the Spoon Theory (which uses spoons as an analogy for energy) has given me great language to refer to the amount of energy I have. One day after I spent an hour arguing on the phone with AT&T when I was supposed to be resting, my husband called and said, "Honey, you don't have enough spoons to go wasting them on AT&T. Now get some rest." That still makes me smile.
That is the thing about chronic illness (of any type). You can't just push your body to the limits and expect energy to come or to rest up tomorrow. Once you are out of spoons (energy) you are out. And if you borrow from tomorrow then you could end up in major spoon debt. Apparently that is what I was in the last few months. A wise Hindu monk recently shared this story with me including that I was in spoon debt. Immediately I started noticing how much energy it took to get up, to take my medicines, to shower, to make breakfast and lunch. By the time all this was done I had to lay down and rest. If I didn't then pretty soon I was halfway through my spoons for the day and it was only 9:00 a.m.!
I think the Spoon Theory has helped me to see the reality of what my body can do right now and how to work within it's limits. For that I am thankful. At the same time I am constantly envisioning when I will have limitless "spoons" again and be able to run, walk, bike and just play without thinking about it!!!
Wednesday, July 13, 2011
The Many Questions
When one finally admits that one is physically ill the questions that come from well-meaning friends and colleagues are many. I thought it would be fun (and healing) to answer them .... again....all at once, where everyone can read them.
How are you? This is such a tough question to answer. "Hanging in there" seems to be my most common response. "It's complicated" is what I often want to say. Maybe if the person asking the question reads the answers to the rest of these questions it will all make a little more sense.
Were you bitten by a tick?
I want to answer with a smart ass comment but I have refrained from that and have chosen to stick to the facts. I grew up in Maryland on a farm where my parents had a deer butcher shop. Finding ticks on your body was just part of life. It wasn't a big deal to us. I can remember it being kind of a fun event to burn them in an ashtray after digging them out of your skin. The only tick bite I actually remember is the one that seems to have caused this disease. That would have been Father's Day 1995. I was sitting in the grass in a dress and a few days later found a tick buried into my ass check. Like always I pulled it off and didn't think anything of it. I remember it itching and noticing that I had a big rash on my butt which wasn't typical for my tick bites. At the time I didn't really know anything about Lyme Disease or what one should do if that happens. Now I would get my "ass" to the doctor and demand a course of antibiotics to prevent transmission of the infection. I didn't have that information then so I just ignored it.
When did you get sick? I started getting sick not too long after the tick bite. This is all a bit foggy and it is a long complicated story. The short version is that it started with generalized viral symptoms which I thought were allergies and/or a sinus infection that I couldn't get over. That progressed to severe fatigue, joint pain and eventually crippling neuralgias. I had to move home with my mom and was barely functional. I had heart palpitations, severe headaches and pain. I was diagnosed with Lyme Disease and treated with antibiotics. (Unfortunately it was the wrong antibiotic for too short of an amount of time.) I improved enough to return to Pennsylvania for my senior year of nursing school but was never the same. Since then I have had one health issue after another with more diagnoses than I care to discuss (including Fibromyalgia). Most recently, in March, I developed a severe headache that decided to stick around for over 2 months. Really this was a blessing because it led me back to "the beginning" of when my health deteriorated and also this road to healing.
What is the treatment? This is a complicated answer. As if any of this isn't complicated! First I spent a month taking various supplements and medications to get the body stronger, decrease pain, get better rest, etc. Now I am on very powerful anti-microbial medication (Samento and Banderol). The main problem is giving people too much too fast and making them very sick. The combo seem to kill all forms of the bacteria even more effectively than traditional antibiotics. Once the bacteria is dead the body has to deal with the neurotoxin, excretion and inflammation. One is subject to something called a Herxheimer reaction. (Just thinking about "herxing" as it is called gives me the chills.) It is a reaction from bacteria die off that occurs in Syphilis and in Lyme Disease. My experience after the second dose of the medication was an intense headache, body pain, severe sweating, chills, fever and overall misery. That episode lasted for 5 hours and thankfully hasn't returned with such intensity. Currently I am suppose to increase my dose every 2 days until symptoms worsen or I "herx" and then hold the dose until I feel better. So far I can only handle increasing once or twice a week. My doctor was kind enough to start me on 2 drops (starting dose is usually 5). It has taken me 2 1/2 weeks to get up to the starting dose. Apparently that is fine. Slow and steady will win this race.
Are you feeling better? Define better. I feel like I am on the road to healing. That is better. Do I have more symptoms than I care to list or think about? Yes. Am I better than I was when I had a non-stop crushing headache for 2 months? Yes. Do I feel better than the month that I worked on getting stronger and was headache free? No. Do I know that this "feeling worse" is actually a sign that I am getting better because the stupid little Lyme bacteria are dying, secreting neurotoxin, causing an inflammatory response and the body is trying desperately to excrete them? Yes. Is that better? I guess so. Does it feel better? No. See...complicated.
Is the treatment working? I sure hope so. Only time will tell. The fact that I feel sick when I take the medication seems to indicate that the bacteria are dying. How much damage was done from years of having this disease and will it all be reversible? Again, only time will tell.
How long will you be in treatment? Impossible to know but the doctor seems to think one to two years. The first few months are the hardest and after that my periods of feeling better should be "a lot better" and the bar will continue to rise of what "better" is. (At least that is what he tells me. What I have read on the Internet seems to corroborate that.)
Who is your doctor? Dr. Ryan Campbell. He is a naturopath (better known as my angel) who recently moved to Eugene. While in school he worked in a clinic in Seattle with a Naturopath and a traditionally trained medical doctor who specialize in Lyme Disease treatment. The term is "LLD" - Lyme Literate Doctor. Meaning that most doctors are truly illiterate in this realm - either have very little to no information on how to treat Lyme disease or have the incorrect information that after a month of antibiotics the disease is gone and any symptoms that happen after that are unrelated. A LLD is hopefully informed in the latest information and connected with ILADS which is the organization of physicians that has the most current treatment information. Dr. Campbell has really gone the extra mile for me. He has done copious amounts of research, has called and consulted with the docs in Seattle and he has even spent a day job-shadowing them recently to make sure he had all the current information on how to treat Chronic Lyme Disease. But the most important thing he has done is to really listen to me, to not discount my experience and to trust me. Those things --- priceless.
How did you find this doctor? Magic.
Have you tried _______? Yes. I have tried almost everything. And if I haven't I probably don't want to at this moment. If you still feel compelled to share then I will listen but please understand I am saturated in this department. In addition to the treatment from Dr. Campbell I am also taking Ayurvedic herbs and following the principles of an Ayurvedic diet for my body type, getting craniosacral work done every 2 weeks (by Benjamin Bell), an occasional massage when I can tolerate it (from Leslie Morrison), daily saunas and hot tubs and resting under heated blankets when I can. I am also supposed to walk and do a little yoga each day (this doesn't always happen). I am open to acupuncture but haven't seen improvement with it in the past. Maybe it could help with the side effects. I will sit with this and see. Finances are a big barrier right now so I have to weigh every decision and see if the benefit is worth the money.
Do you need help? Or, let me know if you need help. Another tough one. Anyone that has every lived with illness knows how hard this is to answer. I am used to giving help, not receiving it. My very wise and inspirational co-worker has offered to help me make a list of what would be helpful so that when people want to help it is easy to guide them. I like this idea. This seems a little better than my current answer, "I am not good at asking for help or giving ideas. If you want to help then do it, but don't wait for me to direct it."
I think the most helpful ways of giving to our family right now are meals (veggie and bean soups and stews are great) and help with general house cleaning and gardening. We also really need an employee that will work at our cat kennel occasionally so we can get away. Our employee moved to Hawaii. We didn't even get to celebrate our 10th wedding anniversary in May:( Right now we are needing coverage for July 30-31, Labor Day weekend 9/3-9/5, November 5-7, and December 25-27. We also could use volunteers to help with data entry and petting kitties. Check out our website for more info about the kennel www.auntiescatkennels.com. I'll think of more ideas in time.
After this doesn't work are you going to go to a real doctor - an M.D.? It has been two months since I was asked this question and thankfully it isn't putting me into a rage anymore. I know the man that asked this was genuinely concerned. But really it makes me want to punch something or someone. When I was in the shower (which is where I do my thinking and reflecting) I attempted to count the number of M.D.'s I have seen since getting sick in 1995. I would estimate about 15. I am certain I am forgetting someone and I am even more certain that there are a few I would like to forget. This isn't counting the countless "other" professionals I have seen with various titles: therapists, acupuncturists, naturopaths, homeopaths, massage therapists, herbalists, energy workers, etc. etc.
I am an R.N. so I have quite a bit of knowledge about and experience with working with traditional western physicians. I really see both sides of the coin on this issue. I feel like they are generally good people who are doing the best they can with the training they have had. That said, some choose to continue to grow and "think outside the box" while others choose to put up cement walls to strengthen the box as not to let in a single new idea or way of looking at something. I have met some of both extremes, but most fall somewhere in the middle.
In my own quest for health I have too often had the experience of explaining my history, having tests done, and when the tests don't show a clear problem being told either "You are fine" or "Here is the name for a good counselor" or "Here is ____ diagnosis (that is totally unrelated to the other 15 diagnoses you have)" or "Do this and you will be fine" or "Take this for the symptoms (without treating the cause)."
Without ranting anymore, I can answer this question by saying that I have been to many physicians for many years. Some have helped with symptom management but no one has offered any sincere advice that seemed to be leading to a cure. And truly, if this treatment works - which I believe it is - I wouldn't care if my current doctor was a veterinarian.
I highly recommend watching a very good and disturbing documentary about Lyme Disease "Under Our Skin." Available on Netflix.
(P.S. Are you worried that all the posts are going to be this long and you will never have time to read them? Fear not. They will likely be short. I just had a lot of information to share to "build the foundation.")
How are you? This is such a tough question to answer. "Hanging in there" seems to be my most common response. "It's complicated" is what I often want to say. Maybe if the person asking the question reads the answers to the rest of these questions it will all make a little more sense.
Were you bitten by a tick?
I want to answer with a smart ass comment but I have refrained from that and have chosen to stick to the facts. I grew up in Maryland on a farm where my parents had a deer butcher shop. Finding ticks on your body was just part of life. It wasn't a big deal to us. I can remember it being kind of a fun event to burn them in an ashtray after digging them out of your skin. The only tick bite I actually remember is the one that seems to have caused this disease. That would have been Father's Day 1995. I was sitting in the grass in a dress and a few days later found a tick buried into my ass check. Like always I pulled it off and didn't think anything of it. I remember it itching and noticing that I had a big rash on my butt which wasn't typical for my tick bites. At the time I didn't really know anything about Lyme Disease or what one should do if that happens. Now I would get my "ass" to the doctor and demand a course of antibiotics to prevent transmission of the infection. I didn't have that information then so I just ignored it.
When did you get sick? I started getting sick not too long after the tick bite. This is all a bit foggy and it is a long complicated story. The short version is that it started with generalized viral symptoms which I thought were allergies and/or a sinus infection that I couldn't get over. That progressed to severe fatigue, joint pain and eventually crippling neuralgias. I had to move home with my mom and was barely functional. I had heart palpitations, severe headaches and pain. I was diagnosed with Lyme Disease and treated with antibiotics. (Unfortunately it was the wrong antibiotic for too short of an amount of time.) I improved enough to return to Pennsylvania for my senior year of nursing school but was never the same. Since then I have had one health issue after another with more diagnoses than I care to discuss (including Fibromyalgia). Most recently, in March, I developed a severe headache that decided to stick around for over 2 months. Really this was a blessing because it led me back to "the beginning" of when my health deteriorated and also this road to healing.
What is the treatment? This is a complicated answer. As if any of this isn't complicated! First I spent a month taking various supplements and medications to get the body stronger, decrease pain, get better rest, etc. Now I am on very powerful anti-microbial medication (Samento and Banderol). The main problem is giving people too much too fast and making them very sick. The combo seem to kill all forms of the bacteria even more effectively than traditional antibiotics. Once the bacteria is dead the body has to deal with the neurotoxin, excretion and inflammation. One is subject to something called a Herxheimer reaction. (Just thinking about "herxing" as it is called gives me the chills.) It is a reaction from bacteria die off that occurs in Syphilis and in Lyme Disease. My experience after the second dose of the medication was an intense headache, body pain, severe sweating, chills, fever and overall misery. That episode lasted for 5 hours and thankfully hasn't returned with such intensity. Currently I am suppose to increase my dose every 2 days until symptoms worsen or I "herx" and then hold the dose until I feel better. So far I can only handle increasing once or twice a week. My doctor was kind enough to start me on 2 drops (starting dose is usually 5). It has taken me 2 1/2 weeks to get up to the starting dose. Apparently that is fine. Slow and steady will win this race.
Are you feeling better? Define better. I feel like I am on the road to healing. That is better. Do I have more symptoms than I care to list or think about? Yes. Am I better than I was when I had a non-stop crushing headache for 2 months? Yes. Do I feel better than the month that I worked on getting stronger and was headache free? No. Do I know that this "feeling worse" is actually a sign that I am getting better because the stupid little Lyme bacteria are dying, secreting neurotoxin, causing an inflammatory response and the body is trying desperately to excrete them? Yes. Is that better? I guess so. Does it feel better? No. See...complicated.
Is the treatment working? I sure hope so. Only time will tell. The fact that I feel sick when I take the medication seems to indicate that the bacteria are dying. How much damage was done from years of having this disease and will it all be reversible? Again, only time will tell.
How long will you be in treatment? Impossible to know but the doctor seems to think one to two years. The first few months are the hardest and after that my periods of feeling better should be "a lot better" and the bar will continue to rise of what "better" is. (At least that is what he tells me. What I have read on the Internet seems to corroborate that.)
Who is your doctor? Dr. Ryan Campbell. He is a naturopath (better known as my angel) who recently moved to Eugene. While in school he worked in a clinic in Seattle with a Naturopath and a traditionally trained medical doctor who specialize in Lyme Disease treatment. The term is "LLD" - Lyme Literate Doctor. Meaning that most doctors are truly illiterate in this realm - either have very little to no information on how to treat Lyme disease or have the incorrect information that after a month of antibiotics the disease is gone and any symptoms that happen after that are unrelated. A LLD is hopefully informed in the latest information and connected with ILADS which is the organization of physicians that has the most current treatment information. Dr. Campbell has really gone the extra mile for me. He has done copious amounts of research, has called and consulted with the docs in Seattle and he has even spent a day job-shadowing them recently to make sure he had all the current information on how to treat Chronic Lyme Disease. But the most important thing he has done is to really listen to me, to not discount my experience and to trust me. Those things --- priceless.
How did you find this doctor? Magic.
Have you tried _______? Yes. I have tried almost everything. And if I haven't I probably don't want to at this moment. If you still feel compelled to share then I will listen but please understand I am saturated in this department. In addition to the treatment from Dr. Campbell I am also taking Ayurvedic herbs and following the principles of an Ayurvedic diet for my body type, getting craniosacral work done every 2 weeks (by Benjamin Bell), an occasional massage when I can tolerate it (from Leslie Morrison), daily saunas and hot tubs and resting under heated blankets when I can. I am also supposed to walk and do a little yoga each day (this doesn't always happen). I am open to acupuncture but haven't seen improvement with it in the past. Maybe it could help with the side effects. I will sit with this and see. Finances are a big barrier right now so I have to weigh every decision and see if the benefit is worth the money.
Do you need help? Or, let me know if you need help. Another tough one. Anyone that has every lived with illness knows how hard this is to answer. I am used to giving help, not receiving it. My very wise and inspirational co-worker has offered to help me make a list of what would be helpful so that when people want to help it is easy to guide them. I like this idea. This seems a little better than my current answer, "I am not good at asking for help or giving ideas. If you want to help then do it, but don't wait for me to direct it."
I think the most helpful ways of giving to our family right now are meals (veggie and bean soups and stews are great) and help with general house cleaning and gardening. We also really need an employee that will work at our cat kennel occasionally so we can get away. Our employee moved to Hawaii. We didn't even get to celebrate our 10th wedding anniversary in May:( Right now we are needing coverage for July 30-31, Labor Day weekend 9/3-9/5, November 5-7, and December 25-27. We also could use volunteers to help with data entry and petting kitties. Check out our website for more info about the kennel www.auntiescatkennels.com. I'll think of more ideas in time.
After this doesn't work are you going to go to a real doctor - an M.D.? It has been two months since I was asked this question and thankfully it isn't putting me into a rage anymore. I know the man that asked this was genuinely concerned. But really it makes me want to punch something or someone. When I was in the shower (which is where I do my thinking and reflecting) I attempted to count the number of M.D.'s I have seen since getting sick in 1995. I would estimate about 15. I am certain I am forgetting someone and I am even more certain that there are a few I would like to forget. This isn't counting the countless "other" professionals I have seen with various titles: therapists, acupuncturists, naturopaths, homeopaths, massage therapists, herbalists, energy workers, etc. etc.
I am an R.N. so I have quite a bit of knowledge about and experience with working with traditional western physicians. I really see both sides of the coin on this issue. I feel like they are generally good people who are doing the best they can with the training they have had. That said, some choose to continue to grow and "think outside the box" while others choose to put up cement walls to strengthen the box as not to let in a single new idea or way of looking at something. I have met some of both extremes, but most fall somewhere in the middle.
In my own quest for health I have too often had the experience of explaining my history, having tests done, and when the tests don't show a clear problem being told either "You are fine" or "Here is the name for a good counselor" or "Here is ____ diagnosis (that is totally unrelated to the other 15 diagnoses you have)" or "Do this and you will be fine" or "Take this for the symptoms (without treating the cause)."
Without ranting anymore, I can answer this question by saying that I have been to many physicians for many years. Some have helped with symptom management but no one has offered any sincere advice that seemed to be leading to a cure. And truly, if this treatment works - which I believe it is - I wouldn't care if my current doctor was a veterinarian.
I highly recommend watching a very good and disturbing documentary about Lyme Disease "Under Our Skin." Available on Netflix.
(P.S. Are you worried that all the posts are going to be this long and you will never have time to read them? Fear not. They will likely be short. I just had a lot of information to share to "build the foundation.")
Tuesday, July 12, 2011
Ticked Off! ..... and finally writing
Ticked Off! That is really what I am feeling right now. I could go on for hours about why I am ticked off about living with Chronic Lyme Disease for the last 16 years without any sincere help by countless medical professionals. Instead I am going to focus on how I can share my story in a way that both educates and inspires others.
I want to focus on how I am going to be well and I am going to beat this pain in the ass (really pain in the everything) disease. I have lived with ridiculous amounts of fatigue, pain, instability and emotional anguish for far too long. It really is time to get well. I am going to just keep saying it, keeping believing it, keep imagining it until it happens.
I am nearing my 37th birthday. One would think I should be generally healthy and not “over the hill” yet. The truth is I can’t imagine 5 more years in this body, let alone another 50. I have been sick since just before my 21st birthday. I have vague memories of being strong enough to swim for hours in the pool or dance all night. I know it is possible. I just wish I could remember what it felt like. It feels like too long ago. I just keep telling myself that it doesn’t matter what it felt like because pretty soon I will be stronger and wiser than I ever was before. Time to take this “ticked off” energy and channel it into my mission. First it was “Operation get Faith stronger” in order to be well enough to even withstand the Lyme Disease treatment. Now we are into the next phase of the mission, “Operation kill the little bastards” (referring to the Lyme bacteria in case you were concerned).
I like to imagine the bacteria dying and being gently escorted out of my system like debris floating down a river. This image is a little less violent than the above operation title. I know how important this imagery is. I have to trust and believe that this body has the strength, power and wisdom to do what needs to be done to achieve optimum health. Just like in childbirth a woman has to trust the wisdom of her body, I too have trust the wisdom of my body.
How to trust a body that feels as if it has failed you for almost half of your life? I honestly can’t answer that question. I think I am in the phase of “fake it and make it.” I must believe with every ounce of my being that this treatment, these medical professionals, these therapies are exactly what I need in this moment and they will work to eradicate this disease from my body. And if I don’t believe it fully I will just keep faking it until I do. I feel like I know longer have a choice. The disease has backed me into a corner and I have finally come out fighting!
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