Complex Grief

Hi everyone,

I cried myself to sleep last night.

Besides the experience of all the events that occurred in the month of March, I have been struggling to figure out what they all have to do with each other and what they mean. I have noticed a few patterns and themes ("Is that your final answer?"; "I/They love you"; "No."), but it's like only having five pieces of a hundred-piece puzzle.

I feel sad.

Because I think I am coming to understand a fuller impact of my illness. I have limitations. There are some things I just can't engage in. I have expenses. I am on par to spend $20,000 on medical bills this year. I am grieving. I have varying degrees of feelings that I must communicate with others, feelings that I don't quite comprehend myself.

Life is very gray.

I heard this all the time as a child, but it hasn't meant much until now - now that I am experiencing it for myself. There is no simple solution - only time and faith. Lots of faith.

I have dreams.

Will they be realized? Will everything turn out OK?

I will wait and listen and trust.

A.

Mess

Hi everyone,

Do you ever have one of the periods in your life where you're utterly confused and in pain? I've got that right now. Since the first day of March, I've been on this roller coaster experiencing some of the most unexpected events. One moment I can feel pleasantly surprised, the next moment disappointment; one moment beautiful, the next moment rejected; one moment energized, the next moment exhausted; one moment loved, the next moment undone. Back and forth, all day long, all month long. (And no, this has nothing to do with hormones.)

I wish I could share what has been going on but everything is a bit fresh. (I do not mind sharing it privately, in person, via email, or phone.) I am waiting a bit longer to see what unfolds. I don't feel anxious to find any particular answer, but I would like some relief. Lately I've been getting this image in my head about traveling somewhere far away (Costa Rica anyone?) where I can hide and disappear and just get away from this mess. I know it's not a long-term answer, but sometimes I just want a reprieve.

A.

Just One Sentence

Dear friends,

The Lord Jesus Christ is really kind to me.

A.

Again

Dear friends,

Though I've been to Seattle plenty of times in my life, I feel like I'm finally just getting to experience this city up close and personal, and it is quite fun. I am drawn to the old and the new architecture that compete for attention; the complicated roadways that keep me on my toes; and the surrounding mountains, bays, and lakes that remind me about who is really in control. If I have to go to a doctor - particularly if it requires travel - Seattle is the place to be.

My visit with the doctor this morning was quite encouraging. There is something quite helpful and cathartic to reflect upon a period a time in the recent past, which, for me, would be the last five months (since I first acquired my current doctor). I remember my first visit with my doctor: I was feeling quite tired, overwhelmed, and a bit lost as I was unclear whether or not I was making sufficient progress. This visit was remarkably better: Visibly, I have much more energy and a big smile on my face. I am also rebounding more quickly from Rife Machine treatments and bodily stress, such as driving for several hours.

This morning, my doctor directed me to stop taking Amoxicillin because the Rife Machine should take care of whatever it was killing. He added Biaxin, which will target the intracellular Lyme, and is keeping me on Flagyl, which targets the cyst form of Lyme. Personally, I was disappointed that he kept Flagyl because it's one of the nastiest meds I take. (I gag several times a week on it, which is difficult to hide in public places. Only a few weeks ago, after many a time of feeling as I were going to do so, I finally vomited up Flagyl - a feat, of course, I was so proud of that I chose a family dinner a few nights later to brag about it. Apparently, my dinner companions had a different opinion about my choice of timing.) My doctor also directed me to continue to take Rifampin, which targets the Bartonella Henslae co-infection, but only for one more month. Moreover, I will be taking a more aggressive medication to kill the yeast hanging out in my body. While I no longer have a black tongue, the yeast has by no means disappeared. In addition to other symptoms (use your imagination...or not, and read previous postings), my tongue is still very gray and heavy. It just feels like my mouth is never clean.

Before we ended the appointment, I asked my doctor, "What is your opinion about the idea of me getting pregnant?"

"Yes! Go for it!" he shouted as if he expected me to get started tonight.

"Well...OK," I said.

"Let me explain what I mean by that," he said. "I don't believe someone with Lyme will ever get well in the sense that they will be cured, but I do believe that someone can get "well", meaning that their immune system is strong enough to handle the Lyme bugs. If you were never treated for Lyme, you would have a 50-50 chance that you would pass Lyme on to your child in utero. Fortunately, you are being treated. As a "well" person, when you become pregnant, all you will need to do is to take one antibiotic - either Amoxicillin or Ceftin - and then you will have almost no risk of passing along Lyme to the baby."

I smiled.

"Thank you," I said. "I'm not asking because I plan on being pregnant anytime soon--"

"--You never know."

"Well, I am starting to date and it will naturally come up and I would like to know what to say."

"Of course," he said. "Those are some great questions and answers to know."

And with that, I walked away feeling more hopeful. Having biological children is an option again. I think I like it.

A.

Physicology/Twenty

Dear friends,

This post will be short because I'm in a lot of pain and need to find my happy place (i.e., in my bed, under the covers, all lazy-like). I've experienced an unusual amount of stress lately. I learned in high school health class that stress isn't always bad, but apparently my body doesn't decipher between good stress and bad stress. I've also been a bit busier than normal, mostly in a lot of conversation with friends and family (concerning the stress), but apparently my body doesn't decipher between good busy and bad busy either. Blast.

I see my doctor in Seattle on Friday morning. We plan to change antibiotics at this time, and I can't wait. Because my body needs a kick in the pants. I need prayer to get up there and back safely (cruise control is my friend). I also just want to rest, spend some extended time in prayer and meditation, and enjoy Seattle with my friends.

Thanks for your prayers. I covet them.

A.

Be Kind, Please Unwind

Dear friends,

One mantra that I have been reminding myself a bit more lately is, "Be kind to yourself" even though I am not totally sure why as of late. I mean, I know that I am my harshest critic. My criticism is borne out of the fact that I do not do things half-assed. I never have.

Lately, I have been thinking about my soccer days. I essentially put that part of my life out of my head for a long time mostly because few people ask or even know to ask. But when I ponder my soccer playing days, I am struck about how hard I worked. I mean, I ran and I ran and I ran. I ran up steep hills, down ravines, around tracks, through neighborhoods, along cliffs. I ran against bigger people, older people, wiser people. I often ran for 90 minutes and then ran some more. Even if I felt like stopping, I learned to dig my heels in and keep going. And I wasn't lagging behind either. I was usually at the front of the pack. But there were more than a few times when my coaches didn't start me. I never knew why. But I didn't let these setbacks deter me. I just worked harder to earn my spot, for which I always did.

I can positively say that I grew as a person during this time. But what happens when I cannot run anymore? What happens when I have to stop? Then what?

I am trying to be kind to my Self: my body, mind, spirit. Running until I'm dead tired is not a healthy option anymore. In the quiet, in the stillness, in the peaceful moments, there I find growth, too. Having an illness, or having really any kind of struggle that moves me, forces me to re-frame my life. What I learn from re-framing can be good - different - but still good. I have to believe that my response to life will only get better if I'm committed to growth and transformation.

Being kind to myself is difficult. I often feel guilty for spending so much time (and money) on myself. I like my alone time and my massages and my coffee. I like losing track of all time and just being. I enjoy becoming giddy over fabulously made sofas and homes with large windows. I love watching the dragon boaters glide by on the Willamette River and people running parallel to them along the Eastbank. I can't get enough of TriMet - so many possibilities, so many different kinds of people.

God is full of lovingkindness. Say it out loud: Lovingkindness. I taught my oldest niece this word a few years ago. She repeated it back to me as if it was the most complicated, greatest word she had ever heard. Probably because it is. It is a word that initiates freedom in every way.

Go and be free,

A.

Rife In the Flesh

Hi everyone,

In this post, I'd like to share with you some pictures about what this infamous Rife Machine looks like. This is the machine that I use twice a week; I have used it since August. I expect to use it for at least another year at the same rate, or however long I need in order to get well. Even when I am "well", I plan to use it as a maintenance tool for years after.

To be honest, I think every household should have one, as this is a machine that can be used for much more than just Lyme. I am actually considering purchasing a machine myself partly because it would eventually pay for itself and partly because I need more time to use it. (I'm up to 2.5 hours twice a week but have no time to experiment with any new auto channels and/or frequencies. I could also probably add a third day of Rifing each week.) The reason I haven't purchased a Rife Machine is because it costs about $2,500, which is $2,500 more than I have. A good friend of mine suggested that I ask friends and family for financial support to purchase this, something I am thinking about but could probably be praying about more. And when I say that I want one, I actually intend to allow others to use it because I think many others could benefit from its use. Would you pray that the money would appear?

Anyhow, here are the photos:

Here is the Rife Machine. Both boxes must be turned on. I punch in my codes on the box on the right. The foot paddle is on the left and the hand paddle is sitting in between the boxes (partially hidden by a plastic bag.)

This is the hand paddle with a wet sleeve over it (to conduct electricity). I usually place this paddle on my stomach, then place a plastic bag over it, and then my shirt over that. This allows my hands to be free and to keep my hands from becoming crinkly.

Here is my foot sitting on the paddle. The ball of my foot must be on the wet sleeve. This paddle may go anywhere on your body that is flat - a leg, a stomach - but the easiest is the bottom of the foot.


And this is me sitting in the chair I cannot leave for 2.5 hours. Books, magazines, crosswords, and conversations are a must. (Electronics + Rife do not mix.) Otherwise, I would be staring at a blank wall.

A.

Well Said

Hi everyone,

I read The New York Times everyday. The newspaper sends me its top headlines to me each morning in my email inbox - for free - and even sends me special editions, too, for instance, the health and books sections.

I just read an article that describes what it is like to have an illness. The author has cancer, though his words could be used to describe Lyme or just about any other illness. I am linking it here for you.

Enjoy your day and get a Times subscription. It's so worth it.

A.

Physicology/Nineteen

Hi everyone,

This Lyme journey is like a roller coaster. One minute I'm staring at the sky click-click-clicking my way closer to the top and the next minute I'm speeding towards the ground at a much faster rate than my way up. Up down, up down. The minute I get accustomed to my body, something changes: I eat something wrong, I encounter a new stress, I don't sleep well.

I suppose this is all to say that I feel pretty crappy right now. I haven't seemed to fully recover from the Doug Machine treatment eight days ago, but an unusually stressful week didn't help either. It's been a while since I have felt this tired, so tired that I can't stop thinking about being in bed. When I get this tired, I find myself nearly running back home (it's more like a fast walk, though the image of myself running plays out in my head). Once at home, I immediately change into my pajamas and crawl into my bed. And then I stay there for as long as I can, save for the times when I have to pee or eat (these are the precise times when I would pay almost any amount of money for a personal chef). When I am in bed, I could care less about what is going on outside or any work I've got to do. All I want to do is watch movies or TV on my laptop and not talk to anyone.

******

Lately, I've been noticing that my eyesight is getting worse. Until about age 20, I had 20/20 vision or better. I first got glasses sometime in college and my vision remained steady for a long time, that is, until now. I only wear glasses when I'm driving or when I'm in a class, both of which I rarely do. But lately, I haven't been reading menus or street signs very well. I have to squint or move up really close to see the board. Or, I just pick out what I know is on the menu and hope I get it right. A few weeks ago, I decided to get my eyes checked out because I've heard a few stories from other Lymese about their worsening eyesight. Fortunately, my eye appointment yielded no major problems, though my eyesight is slightly worse. I will be getting new glasses on Wednesday and my doctor recommended that I wear them more often.

I went to the chiropractor the other day. I haven't been to one since I moved away from Chicago (which was hands down the best experience I've had with anyone in the medical profession). But since I'm not in Chicago anymore, I decided to go to a pretty great place called The North Portland Wellness Center. The home was rehabbed and converted into an office space a few years ago and now employs several practitioners, all female, including massage therapists, acupuncturists, naturopaths, and chiropractors. They give out discounts for those who walk or ride the bus and they take insurance, which is why I started going there in the first place. My appointment with the chiropractor went well - I don't have any major issues going on, which is great news for someone who has had severe back problems, but I will go back every now and then to keep everything in alignment.

I'm finding that there are those small things that may or may not have to do with Lyme and I just need to do some maintenance every once in a while. I'm curious if other Lymese have encountered peripheral problems, such as vision or dental problems? Maybe your bones have become brittle? Or perhaps your nails are thinning? These are some problems I've heard about from other Lymese, though I'm sure there are many more. Please let me know. It would be interesting to know what others are experiencing.

A.

A Confident Grace

Dear friends,

I find that one of the best things anyone can do for me is to have confidence in me. This, I can probably say with assurance, is a need of mine. When others believe in me, it inspires me to believe in myself. It inspires me to keep going in those low times when I can't see the finish line. In the last two days, I have gotten some of the most encouraging words and support - all so timely. Just today, I received a note in the mail from some old friends of mine:

"You are very special and have taken this illness on just like you did everything else - with a lot of heart, determination and positive spiritual belief. These have served you well - don't give up (something you NEVER did in sports, right?)."

And from another friend:

"Tomorrow will be a new day and now you are older which is always better!"

When I feel people supporting me, I am released to tackle anything. It is in these moments when nothing is impossible. I could jump out of a plane or confront conflict or take a lovely, slow walk or...get well. Probably all of the above.

A.

It Is My Birthday.

Hi everyone,

The weather in Portland was just as I like it. At first it was cloudy and rainy - I walked to the bus in the rain - an ominous start to my day. Then by the time I got downtown to catch a bus, the sun was beginning to wake up from its slumber. And as I walked back to the bus after treatment, I watched the storm clouds roll in for another rain. Back and forth, all day long, the sun and rain fought for control. The weather today was not only the perfect weather way to honor my birthday, but for my life, too.

There is always sunshine and there is always rain. I cannot have one without the other. It's just life. But, sometimes, sometimes, particularly when another family member tries to blame me for another family's abuse, that's when I just want an umbrella.

Yes, I was abused. Physically, verbally, emotionally. For about eight years actually. I don't mind talking about it because I've done a lot of work regarding my healing journey and because it's not in my nature to be silent about injustice. I haven't written about this topic on my blog mostly because I haven't felt it was entirely appropriate - not because I don't want to talk about it; I can talk freely about what happened. At the same time, the abuse has everything to do with Lyme Disease and who I am today. Just like Lyme, abuse does not define me, but it has shaped me into the woman I am today. I plan to flesh this out in future posts.

It is my birthday. I am 27 years old today, an age ten years ago I never dreamed I would see. I am healthy, growing, broken, and seeking wholeness.

My birthday wasn't all bad. After I got home from treatment, I went out to ice cream with my four-year-old niece, Jasmine. (She and her family (Stephen, Terri, and Madison) moved back from Florida at the beginning of the year. As luck would have it, they purchased a house just six blocks from where I live. This is quite a blessing.) Jasmine told me yesterday that she wanted to get ice cream, so I suggested we get some today since it was a "special day" even though she has yet to understand that the "special day" meant my birthday. Somehow, kids don't seem to see anything beyond sweets. Oh wait, neither can I. Anyhow, we went to Coldstone, which is particularly fabulous because I get to eat mint ice cream with not one but two Reese's Peanut Butter Cups. I know most people cringe at this combination, but my palate deems this absolutely delicious.

After we ate our ice cream (Jasmine had cotton candy ice cream with Oreos), I took her into a shoe store and a woman's boutique. Now, as I think I have described on this post before, Jasmine is a girly girl. She loves make-up, she changes her clothes probably ten times a day, and she is just way more attuned to fashion than I am. As we walked into the shoe store, she immediately ran through the store touching every single shoe. She picked up one high heel which was definitely not my style (if I've got one) and told me to try it on. I laughed and told her to put it back where she found it. Later on, we moved over to the women's boutique. Now this is more my thing. I love independent boutiques; if I could afford it, I would buy most of my wardrobe in these shops. Jasmine was immediately drawn to the lip gloss because they had testers on the shelf. She opened up all of them and chose the color she liked the best (pink of course) and then proceeded to ask me to buy it for her. I'm the fun aunt, so what do you think I did? I found something, too - a necklace that I actually liked. I do not wear necklaces mostly because I've never found one that could go with most things. But, today, I found "the one". Look for it on my neck the next time you see me.

Being with Jasmine and buying something that made my happy brought a lot of joy to my life today. It is my birthday. I'm ready to see what happens between now and the next one.

A.

Girls & Lyme

Hi everyone,

(This post may be uncomfortable for men, so I'm warning you now. If you want to keep reading, I suggest that you stop eating, throw a football around, belch, fart, or do whatever you need to do.)

Last week I received my menstrual period. (I warned you.) Now, I know you're probably thinking, Why is this so special? What does this have to do with Lyme Disease? Actually, more than you think. First, a little personal history: One of the things I have noticed all my life is that my hormones are imbalanced. I got my first period at a late age and were always quite irregular from the start. I never really minded but I suppose it would be a problem when/if I wanted to get pregnant.

One of the supplements my (old) doctor gave last spring was Evening Primrose, a pill for women. Soon after, I noticed I was getting my period on a close-to-monthly basis. Then I started taking antibiotics last summer. You know when women get stomach cramps or sometimes back cramps around the beginning of their period? (I suppose the length and severity differs from woman to woman.) Well, I noticed last summer that I got those, too, but most of the pain landed in my thighs. The day before or the day of my flow, my thighs would feel heavy, crampy, tight, and just plain painful. I would have difficulty walking or concentrating on anything during this time. Usually I could just lay down for a morning to make the pain go away.

I remember once when I went out to lunch with my mom, youngest brother, baby nephew, and the baby's babysitter (my sister's brother-in-law). Though I was writhing in pain, I suppose I was more hungry for Mexican food. At the table, my mom noticed that I was not eating, hunched forward, massaging my thighs, and whimpering like a dying cat. (I was also spewing bad words in my head).

"What's wrong?" my mom asked.

"I got my period this morning."

The boys let out a loud wallow and embarrassed laughter.

"Why did you just tell us that?" my brother asked.

"I'm in pain here!"

The boys quickly changed the conversation while I kept on massaging my thighs.

In the fall, when I switched doctors, I started taking a supplement that minimizes herxes. When I got my next period, I noticed the pain in my thighs had decreased: instead of an entire morning of the thigh cramps, it lasted for just a few hours. Then, last month I noticed that the severity of the cramping had decreased exponentially. And finally, last week, there was no cramping to be found. None. Nada. Not in my thighs or my stomach or my back. In fact, the only reason why I was "prepared" for my flow was because that I had a hunch, probably stemming from the fact that it had been more than a month since my last period.

It feels good that the supplements are working and that my body is working for me.

A.

The Doug

Hi everyone,

If you have been carefully reading this blog, you will remember that I have mentioned something called the Doug Machine (also known as the Coil Machine.) The Doug Machine is named after Doug MacLean, an engineer who contracted Lyme I believe sometime in the late '80s. (For more information, click the title.) After hearing a rumor about a treatment called the Rife Machine (named after the man who created it and is the machine I use twice a week), Doug decided to put his education to use to come up with a machine similar to what he had heard about using electromagnetic frequencies. What he eventually came up with is the Doug Machine.

The difference between the Doug Machine and the Rife Machine is that the Doug is mainly created for Lyme Disease. Yes, you can use any frequencies up to 2200, but the machine is not as easy to use as the Rife Machine: the more frequencies one wishes to use, the more time and effort it takes. The user can only use one frequency at a time on the Doug, whereas he can use multiple frequencies on the Rife Machine. In addition, the coil on the Doug Machine gets hot pretty quickly, so one has to stop after a short amount of time and let it cool down.

The reason I am telling you about all this is because I got to use the Doug Machine for the first time yesterday. I did frequency 612 for 30 seconds each at three different spots on my body. Here is a picture of me using it:

Pretty exciting, huh? Yeah, I think it ranks right up there with Indiana Jones running in front of the boulder...

Do you see the coil near my waist? We first placed it near my head for 30 seconds, then near my waist, then near my knees. Though we couldn't see anything happening - I nearly expected a flash of lightning to come shooting out of the coil - I definitely started herxing right away. (For those of you who don't know what a herx is, it is essentially what my body feels when the bugs are dying off. Though it doesn't feel good, it's a great sign that my body is responding to treatment.) Actually, I've been herxing for 24 hours now. I went to my Rife treatment today anyway and did the non-Lyme frequencies only. And now I am currently in bed because I am having trouble walking. Fortunately, my mental clarity is very sound.

And here is a semi-close-up of the machine:



There are three boxes on top of the cabinet. The small, white box on the top is a function generator. The black box in the middle is your run-of-the-mill amp. Both of these boxes are purchased at Radio Shack or your nearest nerd shop. The large, white box on the bottom is the frequency machine, which is what a nerd has to build. You can't see it in this picture, but there are a bunch of switches on the right side of the box. Certain switches have to be flipped on depending on the frequency you are using. If you don't get the switches exactly right, the coil will not turn on. This is another reason why the Doug is so difficult to use.

The coil is sitting on the table, and a long cord several feet long is connecting it to the frequency machine. It is vitally important that when the frequency machine is turned on, the user must either keep the coil at least two yards away or turn it sideways. This will prevent the entire machine from being fried. It is also important to keep all electronics (cell phones, cameras, etc.) at least two yards from the coil machine. I personally kept mine behind a wall. I didn't want to take any chances.

Anyone in the room while the Doug is turned on will get a treatment, though the effect decreases exponentially the further you are away from it. If you do want a treatment, you should be a foot away from the coil and move it around your entire body wherever you wish. As for the amount of time, the user should start off at 30 seconds in each spot and gradually work herself up. Joel, the owner, has been using it for less than two months and is now up to using it for 45 minutes total once a week.

To be honest, I was pretty surprised about how powerful this machine is; I have not herxed this much in a while. I will probably end up doing this every two weeks or so, which is something I'm looking forward to.

I never knew men named Doug and Royal Raymond Rife could save my life.

A.
P.S. The information in this post is my personal experience only. This is not meant to be used as medical advice. In other words, please don't sue me. :)