Resting in clarity

Hello all.  Apologies for the disappearing act.  I have been having a difficult few weeks and have been very rarely online.  Mostly resting in bed during the day and trying to give my body as much support that way as I can.

I wanted to pop in and share a video that a friend just shared with me.  In those moments when the physical, mental, or emotional pain comes to be too much and there is little that can be done to “fight” it off, this message is very welcome.  It has helped me today and perhaps it will touch you too.

Best wishes to you all.

 

A Stable Relief from Physical Pain: Anat – 10.15.10 from Balanced View Trainers on Vimeo.

New birth year, new frequencies, and old symptoms

I had a lovely day on my birthday.  Well, it was a mixed bag actually – somewhat bittersweet with all the associated emotions that I talked about in my last post.  But underneath the pain and sadness of that, I had a nurturing birthday with my husband.

My husband took the day off from work to be with me, which was the ultimate gift, and one I valued a great deal.  His business has been booming lately, and we just haven’t had enough time for quiet moments together and the meaningful conversations that we thrive on as a couple.  So, beyond the day being about me and my birthday, we really dedicated it to being together and reconnecting on that level.

The part of that day that I remember most fondly came in late afternoon when we went to the park near our home.  It has a paved trail running along between fields on one side and a beautiful wide river on the other.  Children play, runners run, bikers bike, teens play soccer, dogs burst into action and then lollygag about, and in general it has a peaceful but playful feel to it.  It was a gorgeous day.

I got into my new wheelchair and Husband pushed me beside the river for alittle while until we came upon a bench in the shade.  There we sat by the river and talked for awhile, while I sipped on my organic decaf latte.  That time beside the river with my husband was the most nourishing and refreshing.

After a few days of rest to restore my energy we started talking about my treatments.  The rife treatments gave me strong or moderate herxes when we first started, but the past month I seem to have hit a plateau.  I don’t have my awful days of herxing, and I am not as badly ill as I was before we started treating, but I’m not very well either.  We certainly have a ways to go.

We then realized that we’ve basically been using the same 4 lyme frequencies on the rife machine for the past 3 ½ months.  We increase the length of each frequency each time, but it’s still the same frequencies.  This is likely why I’ve hit a plateau.

So, on Friday night we started 2 new frequencies and I’m definitely herxing.  This is positive and good, but I admit that feeling this ill again has been hard.  It’s hard to feel how ill one person can be for so long, and I get really tired of it at times.  But, as I said, the herxing is a good sign, so I’m just trying to have faith and stay present with it.

One area that Husband and I are both a bit concerned about is my tremors.  I mentioned recently that my tremors got bad again, with a few seizures thrown in for good measure.  I think this was due to a lyme flare.  But, they don’t seem to be receding to their previous low level of intensity and frequency.

The tremors decreased for a couple days while I was super weak from the rife treatment, but then returned and became quite severe.  I’m wondering if this means that my neurological symptoms have worsened again in the past month.  The baseline now seems to be stronger tremors with occasional periods of rest, while I had gotten used to mild or no tremors with occasional strong tremors.

In the end, it’s all just part of the process.  I’m trying to just stay focused on the path and be in the moment.  I have faith we are on the right track with treatment, so beyond that there I just have to trust and allow it to be what it is.

I think my greatest fear is that somehow I may get permanent neurological damage from the tremors.  But, I know there are others who have been here and gotten through.  So, just trying to stay the course for now.

A friend of mine sent me some CDs recently of guided meditations and spiritual talks, and listening to those seem to help in my stressed moments.  Returning to center and remembering the space that is wellness, beyond any physical circumstances.  Being gentle with myself, and being gentle with my body.  This gets me through.

Reflections on my 30th birthday

Alittle less than 2 years ago, my husband turned 30.  His birthday came during a time in our lives when many things were changing and it felt as though a new chapter was being entered on many levels.

In the month before his birthday, Husband graduated from his masters program in acupuncture.  For a number of years we had been searching for the town we would eventually want to move to and settle down in (hopefully for the rest of our lives), and that fall we had found it.  Immediately following Husband’s graduation we began packing and moved across the country, leaving the place we had lived for 3 ½ years.

My own masters program was coming to a close as well, and I had my last in-person class.  While I worked to complete my thesis, my husband gave birth to his new business in town – building his acupuncture practice and going through all the steps that entails. And of course, as is usually the case when there are such massive external changes happening, all of this outer movement prompted quite a bit of inner change and consideration of the people we wanted to be in our new home.

All in all, when my husband turned 30, there was a lot of meaningful change happening in our lives.  I can’t speak for my husband regarding what turning 30 meant for him, but I can speak to what I experienced during that time period.  It felt as though turning 30, beyond simply becoming older, meant moving into a new stage in life as an adult.  And that new stage felt like a birthing of many of the ideas and dreams that had been conceived of and worked towards in our 20s.

Well, tomorrow is my own 30th birthday.  I certainly don’t have the same huge shift in life circumstance that came during my husband’s birthday, and that really isn’t necessary.  I already went through that time with him, and had my own life shifts as well.  I don’t need it again.  (Nor do I want it right now.  Do you hear that, universe?  Some quiet time is ok for awhile.)

But, instead of moving into a time where the dreams I worked towards in my 20s are coming to fruition, my world has become much smaller.  It is painful to see myself turning 30 and mostly housebound, reliant on my walker just to get to the bathroom, and contorting and spasming as I sit to write this blog reflection for my birthday.

Last week I bought myself a wheelchair, a second walker for use out of the house, applied for a disabled parking permit, and got a shower chair.  As I made these purchases, I would occasionally remember that my birthday was approaching and immediately burst into tears.  I don’t want my 30th birthday to be marked by this level of illness and disability.

Really, as an outer celebration, this birthday doesn’t necessarily mean anything.  It’s just another day and another moment in my process in this life.  But, on the other hand, beyond the pomp and parties that usually accompany birthdays, the anniversary of one’s birth brings with it the opportunity to reflect on where we are, where we’ve come from, and where we are going.  And in that context, my birthday does mean something – and it being my 30th feels significant.

In astrology this age comes during the Saturn Return, and since my 28th year, I have definitely felt this time as one of reflecting on my life, considering where I am, and making the changes I need for moving forward.  I have been embracing those things I want in my life, and letting go of what no longer serves me.

And in that context, the place where I find myself on this day is actually divinely inspired and flawless in a way that I can only hint at in writing.  The perfection of my life circumstances on this birthday is stunning, as a reflection and celebration of what my life has been and what I am reshaping it to be.

I finally identified the illness that has affected my life since age 11 (if not earlier), and I’m in treatment for it.  The many health and emotional complications I’ve experienced for most of my life are all being considered and approached from a new perspective – one that will help me move through it to a better place.

Also, as I discussed in an earlier blog post, this time is about more than just treating a bacteria called lyme and detoxing from neurotoxins.  It is about detoxing on every level from all the repressed emotions, experiences, traumas, and harmful relationships that have been a part of my life until now.  That is an absolutely essential process for healing my illness, but also essential for moving into the kind of life I want for myself on a deeper level.

I have deeply felt the universe finding ways during this time to give me the opportunity to heal through any unresolved issues from my earlier life, if I choose to rise to the occasion.  Old relationships that were left unresolved are coming back into my life to find resolution, I’m being asked to respond to challenges in my life with new patterns, and in general I feel my personal development being jumpstarted and moved along in real ways.

So, while I still feel some bitterness and pain around being at this level of non-health as I turn 30, I also absolutely recognize that these external circumstances are providing the means for deep internal processes and transitions to be made.  Transitions that couldn’t be made in any other way.  For that I’m very grateful and inspired.

Last, although I have gone back and forth on writing about this, I will share that this age means something to me as a woman.  One of the strongest pains I feel as I turn 30 is that I really thought I would be a mommy by now.  My husband and I have been married for 6 years, and have talked about our children for many of those years.  We planned to start our family just at the time when I became severely ill, and so have needed to hold off on that.

For the reasons I outlined above, I’m really grateful to be going through these changes (both physical and emotional/mental) before becoming a mother.  I know I will be able to be more the mother I want to be once I am stronger and have healed on these levels.  But, I still yearn and ache for my first child to finally come into our lives.

All I can do for now is to commit to the work I need to do for myself.  By working on myself in all these ways I will have more to offer our family and more ability to enjoy the life we create, when that time does come.

And so I anticipate my birthday with mixed emotions, but an open and grateful heart.  September 28, 2010 – A day of reflection on where I have come from, where I am, and the promise of growth and possibilities for the future.

The illusion of control

I go through cycles with Lyme.  Most of these cycles coincide with my treatment schedule.  I rife, I herx, I feel alittle bit better, then I start to feel alittle worse again and start the cycle over again.  With Lyme treatment, that cycle usually takes 1 ½ – 2 weeks.

Of course, I treat for Babesia at regular intervals along the way, and that process creates smaller cycles within the larger one.  Those cycles last about 2-3 days.

Something I appreciate about using a rife machine is that these cycles are fairly predictable.  I know exactly when I’m rifing and when I will likely herx.  There is a guessing game we play with knowing what frequencies and durations I will most respond to.  But after that, if I don’t overexert myself in other ways, I can predict when I will likely feel low and when I will have alittle bit of a reprieve based on my rife schedule.

However, Lyme still surprises me.  And often, just when I think, “Yeah, I’m on top of this,” I am taught that really things are not always so predictable.  I would like to feel that I am in complete control of this process, but really that is a huge illusion.

I try to feel in control because it makes me feel more comfortable.  It makes me feel safe.  But there is a larger rhythm of life that none of us can ever know or fully understand.  The only way to move in that gracefully is to flow with those changes.  To allow everything to change.

By letting go of the need to “be on top of things” we allow life, as it truly is, to touch us.

I don’t really want to live in a reinforced fortress of “control” through these days.  I would like to experience what this illness, this pain, this changing-ness really means.  I’m beginning to recognize that I can’t actually experience life as it is by maintaining the illusion of control.  Because really…there is a greater force at work here.

The last couple of days I’ve had a dramatic intensifying of my symptoms.  I’ve come to recognize, from going back through my treatment/symptom journal, that I think I have monthly lyme flares – as I’ve heard others do.  Each month around the 23rd to 26th or so things seem to get worse.  This is the first month I’ve been aware of that cycle though.

Wednesday I posted on a lyme rifing thread about how much better symptoms were.  I’m walking better with my walker, have less body pain, and my tremors and seizures are a lot better.  While I’m still very ill, this news is great!

Then, later that afternoon my tremors suddenly intensified dramatically.  That evening before bed I had a strong seizure.  Thursday I had another seizure and some of the most intense body spasms I’ve had in awhile, while struggling to walk due to weakness and muscle contractions.  Today is those symptoms have let up alittle bit, but they are still very present..

This worsening of things doesn’t mean I’m not still better.  I definitely am.  But, being better doesn’t mean I’m out of the woods.  And being better doesn’t mean I always know exactly what my body is going to do.

The irony of thinking I’m done with seizures and strong tremors, and then having them return so suddenly, sometimes makes me feel bitter.  I want things to be different than they are.  I want to feel some sense of control over my body and my healing.

But, perhaps the thing I am meant to experience in this is not how much better I am.  Perhaps I’m meant to experience a softening.  A letting go of control and tension.  Of allowing what is, to be.  Of knowing that once I know that I’m on the right path with my treatment and that I’m doing all I can to help my body, I can let go alittle.

Let my body move through the cycles it needs to.  Let myself move through the cycles I need to.

Really, there isn’t much more I can do beyond that.  Pretending there is more only causes me pain and frustration.  Learning to stay and experience each moment for what it is… this is a worthy teaching and one that will enrich my life during my illness, and once I am well too!

Experiences with Babesia

As I mentioned earlier, I tested positive for Babesia through Igenex alittle over a month ago.  I knew very little about this co-infection prior to my diagnosis, and was quite overwhelmed by the realization that I had yet another infection to target.  But, in the last month or so I have experienced Babesia in new ways and have come to a more understanding place with it.

Here is an update on all things Babesia:

1) My rife schedule right now is loosely as follows:

Every 2 weeks:  Rife for Lyme and Babesia together

Every 2-3 days:  Rife for Babesia only

Babesia has a shorter life cycle than lyme and so it’s important to rife for it more frequently.  I started rifing for Babesia once a week and quickly found I could increase that to my current time span.

Although I was initially concerned about rifing so frequently, given the fact that I seem to take about a week to recover from my lyme rife sessions, I find that I recover more quickly from Babesia sessions.

With the lyme frequencies I typically begin herxing about 24 hours after treatment and continue herxing for about a week.  However, with Babesia I typically begin herxing either during the rife session or within an hour.  And, the herx mostly passes within 24 hours.

That’s just me of course, and everyone is different, but I suppose it makes some sense given the shorter life span of Babesia.

2) Rife machines don’t have as strong of a track record in treating Babesia as they do for lyme.  Many have recovered from lyme with the rife machine, but Babesia is not quite as clear.  Some people give good reports, while others don’t.  So, we weren’t sure what to expect when we first began rifing for Babesia.

For that reason, I originally planned to take Artemisia and Red Root for Babesia in addition to rifing.  However, when we saw how clearly I had a response to just the rife machine on the Babesia frequency, we decided to hold of on the Artemisia…atleast for now.  I can’t imagine herxing from the rife at regular intervals AND from the Artemisia in my system.

I did recently start taking Red Root, which helps clear out damaged red blood cells from babesia, and is helpful for the body in general in moving lymph, helping circulation, etc.  Since this is more of a supportive herb, and doesn’t promote die-off itself, this feels like a nice herb to take while I’m rifing so frequently.

When I went to herb school about five years ago, I remember my teacher encouraged us to add alittle Red Root to every formula, because it helps everything else circulate better and any other herbs would get where they needed to go more easily.  So, after forgetting most of my herbal learning from back then, it’s nice to return to Red Root after all these years.

3) Stephen Buhner has a short section on Babesia in his book, Healing Lyme, and I found it to be the most clear, succinct, and helpful description on the infection that I read anywhere.  He gives suggestions for treatment as well, but his overview of the disease was very welcome for me as a beginner to this whole thing.

4) The first time I rifed for just Babesia proved to me that I really did have this co-infection, because I immediately began herxing.  To some degree, even though I had tested positive with a blood test, I think I still was in denial about having this infection.

I didn’t really want to have it, and I also didn’t think of myself as having the classic case of Babesia, (I don’t really get fevers, and I only get drenching sweats occasionally at night.  I do have air hunger, but…well, ok, maybe I was in denial.)

However, when I rifed with only one frequency that specifically targets Babesia (570 Hz, for anyone interested) and immediately had a dramatic worsening of symptoms, it became very clear that I do indeed have this infection.

5)  Although fevers, air hunger, and drenching sweats are some of the more classic Babesia symptoms, I have learned that these are not the only ways Babesia influences the body.

One thing I really appreciate about rifing is that the herx that results from a particular treatment gives me a very clear sense of how my body responds to that particular infection.  For me, in addition to the air hunger and night sweats, Babesia has a strong emotional and neurological component.

After a Babesia treatment, in the first hour I begin feeling incredibly spacey, woozy, and fatigued.  I feel like I’m walking on a cloud, and my head is somewhat detached from the rest of me.  Conversations with my husband during that period of time are rather humorous …or would be, if I had the presence of mind to recognize what I said.

I also become fairly anxious and feel emotionally chaotic.  I think to some extent, this is my mind’s way of trying to gain control during a time when I suddenly feel so utterly not myself.  However, I also feel that the Babesia die-off itself creates some anxiety and that experience of emotional chaos.

Last night I told my husband that during the day I had experienced a few moments of suddenly panicking and feeling as though something in my body was really wrong – like I was having an emergency.  But, I couldn’t figure out what was wrong exactly.  He lovingly and humorously responded, “You mean, it feels as though the inhabitants of your body are all dying at once?”

That made me laugh, and as usual he has a way of helping me put this experience in perspective.  Obviously when these bacteria and protozoa have been with me for so long, and they suddenly are all dying, it will create quite a stir and feel quite unsettling to have them all dying at the same time.  That’s what we are aiming for though, and we can be gentle with ourselves – even when everything feels like it’s falling apart.  Sometimes things need to fall apart….and that is ok.

6) The first few weeks that I rifed for Babesia I thought that my babesia herxes only lasted a short period of time.  After a treatment, I would immediately begin herxing, but it seemed as though the herx was generally over by the next morning.  Generally the next day I felt “ok” –  my usual lyme self.

However, at one point I began to realize that over the past 2-3 weeks, I had regularly been getting in arguments with my husband.  Often.  That wasn’t like me.  And, I felt particularly depressed around the same period of time.

Then I looked back in my treatment/symptom journal and realized that the night before each of those days of intensified depression and arguments with Husband, I had rifed for Babesia.  Wow.  What an eye-opener.

Through that discovery I’ve recognized that Babesia really has really played a large role in my longtime depression.  That realization feels very freeing.

I also recognized that I have learned to respond to my depression by tightening up and trying to fight it.  I have wanted to push it out of my life.  However, as with most things, when I fought my depression rather than accepting myself in it, I also ended up fighting other truths in my life.  This led to me fighting my husband.

Husband is very loving and accepting of me wherever I am, and has always made it clear that my depression is not what hurts us as a couple.  It is when I fight what is true.  It is when I am not honest with myself and with him.

And so, the day I sat with this truth and allowed myself to accept my depression, to sit in awareness of it, to be honest with myself in it, to stop fighting myself, I naturally stopped fighting him as well.  And the most surprising part, which perhaps shouldn’t have been quite so surprising, is that the more I accepted and sat in awareness of my emotional state, the less it overwhelmed my days and the less it hurt me.

What a blessing.

Accepting Disability

I’ve been thinking a lot lately about disability and the associations most of us have with it.  Disability has an extremely negative connotation in our culture, and we are encouraged to “fight” against illness and disability, and not give in to lower levels of functioning.  If you are capable of doing something for yourself, you should do it.

I think that on one level, this perspective can be helpful.  It can help us get through challenging times and stay active despite the limitations our body throws in the way.  Being independent is important, and having ways that we feel “normal” is comforting.

However, I also think that at times this “fight against disability” mantra can really be damaging.  And, recently I’ve begun noticing small ways that my own “fight” has actually held me back in my healing, engagement in life, and general outlook.

Although I have thrown around the concept of having a disability in the past, and I’ve certainly had to get used to a different lifestyle since becoming so ill, I’ve still pushed against the idea of being disabled up until now.  And there were good reasons for that.  I didn’t want to be defined by this illness, and I didn’t want to give up any positive level of functioning I had.

However, there is a subtlety in which accepting one’s disability doesn’t have to mean being defined by it.  And really, accepting one’s needs and requirements is a whole lot more empowering than pretending they aren’t there and getting kicked in the butt over and over again, as you pretend to be someone you aren’t.

This lesson really came home to me a couple of weeks ago.

Months ago, when I became more seriously ill, I stopped using my desktop computer and switched to using my laptop.  With my laptop I could sit back comfortably with my legs up in the recliner, and not tax my body so much by sitting up at the computer.  When I finished using my laptop, I would walk the 6 feet to the TV table across the room and leave it there.

Well, a few weeks ago I was having a flare-up and was struggling more than usual with walking.  I slowly shuffled along with my walker and had to focus intently on moving each foot as necessary.  On that day I spent some time with my laptop, placed it on the TV table, and as I turned to walk back, tripped over the cord – thereby dumping the laptop on the floor, which broke it.

Enter a few hours of crying, exclamations like “What the heck is my problem?!  How could I do that?!”, sitting bent over in frustration, and general self-blame.

My husband was very understanding, comforting, and reassuring.  He happens to have a very old laptop from his school years that he didn’t think worked anymore.  But, he checked and fiddled with it and found that although slow, it would in fact work!  So, the next day I began using his computer.

And… can you guess?  Yes, I did the exact same thing.  This time, I managed to stick my foot out in time to half “catch” the laptop as it fell, so it didn’t actually break.  But, it fell and the laptop probably didn’t enjoy it so much.

Enter another few hours of crying, self-blame, anger, and exclamations like, “What the heck is my problem?!!”

But, as this was the second time this had happened (in as many days!), I eventually calmed myself down and decided to look at why this was happening.  And the answer was staring-me-in-the-face obvious.

What the heck was my problem?  My problem was that I couldn’t lift my feet.  This was not a character flaw.  This didn’t mean I was an idiot.  This was not some issue with me as a person.  This was a problem with my physical health, and reflected that I lacked the ability to lift my feet enough to not trip over the computer cord.  It’s as simple as that.

And so with that understanding, I calmly went to the small and ultra-light TV table and moved it next to my recliner.  It was as simple as that.  The table looks just as fine in its new spot as it did across the room, and now when I want to use the computer, I just sit on my recliner and then lift the laptop from the table to my lap.  So easy, so simple, so obvious.

So the question is:  Why in the world didn’t we move the table next to the recliner sooner?  I think it had to do with trying to “fight” my illness.  Not accepting my limitations.  When I didn’t recognize and accept my needs, I couldn’t possibly recognize what steps could be taken to make this situation easier for me.

This is just one tiny and relatively judgment-free step I took for myself.  By “judgment-free”, I mean that most of us don’t think, “Oh no!  Moving the table closer to my recliner means I am disabled!”   But, what if there are other steps I could take that might have that connotation?  Accepting myself as disabled allows me to make choices that may help me actually be able to engage life more fully.

Moving the laptop didn’t only make it less likely that I would break my laptop. It also, in a way that I can’t quite explain, added to my quality of life.  I don’t need to expend as much energy getting my laptop now, which means I can use that energy in other, more productive and vitality-enhancing ways.  That energy can go towards my healing.

So, I’ve been looking on a few other things I can do for myself that I think will help me in a similar way.  Although it means accepting that I need these things (which is hard at times, I admit), accepting my needs also is leading to some excitement about the possibilities that taking care of myself will create.

When I don’t have to expend my limited energy on inconsequential things, I may be able to use it for things that actually help me and lead to my healing more fully.

Some of the things I’m working on:

–   I’m buying myself a seat for the shower.  Showering is very difficult for me, and totally wipes me out for the rest of the day.  As it is, I try to shower once a week, but even that is quite a strain.  I think that no matter what I do it will be tiring, but being able to sit for my shower will make a big difference.  Maybe I can even shower more often!

–   I’m going through the steps to get a disabled parking permit.  I hardly ever leave the house, but when I do every step costs me something.  A week or so I was using my cane, walking what seemed like a very small distance from our parked car to a store front, when I stopped to catch my breath.  I realized at that point that I was standing where we could have parked in the first place, if I had this permit.

So, even if it only saves me 20 feet of walking, this permit will be worth it.  Energy should be put into healing right now, not walking farther.

One good day a while ago I went to our local riverfront park and noticed that it too has a disabled parking area.  If I could save the 10 feet walking through the parking lot, that might mean 10 feet more walking along the river, which would be lovely.

–   Instead of longingly walking past the electric wheelchairs that sit at the front of our local food co-op (on the once-monthly day I go there), I am using it.  Oh man, I can’t tell you what a difference this makes.  This step really was big for me in accepting my limitations, but I did this for the first time this week and it really helped.

Although I was still exhausted by the whole store experience, I didn’t have to be in bed the rest of the day.  And, when my consciousness was feeling fuzzy, as it sometimes does, I wasn’t constantly worried I might collapse.  It really helped me feel more confident being in the store, and my energy expenditure was much less than usual.

–   I may get a manual wheelchair so that my husband could occasionally take me on a walk or even into a small bookshop or something for a jaunt into the world.

——-

This new way of thinking has not only changed some of the things I’m doing for myself, it is also helping me be gentler with myself.  Recognizing that I have a disability means knowing that I have limitations and that I can’t hold myself to the same requirements I used to.

Getting exhausted by walking across the house or standing in a shower doesn’t mean I’m a bad person and need to try harder (I know, that may be obvious, but sometimes it seems that way at times) – it simply means I have a disability and I need alittle help with these activities.

It means I can be gentle with myself.  It means accepting myself.  And in the end, quite contrary to what I might have thought, this feels quite empowering.

A wedding invitation

For months we have been anticipating receiving the piece of mail we got yesterday.  We knew my husband’s old friend would be getting married this October in the town where Husband grew up, halfway across the country, and we have known that Husband would definitely want to go.  What we haven’t known is whether my health would allow me to go with him.

We had been putting off thinking about it until we received their wedding invitation, which we got last night.

Husband and I talked for awhile about the implications.  We have always tried to go on trips together.  Although that hasn’t always worked out, it became clear early on in our relationship that even if there were practical difficulties involved in one of us joining the other on an overnight trip, we always did better if we stayed together.

Being able to share a new experience and process it together.  Being able to find comfort in each other’s presence even if too tired to talk.  Finding support just in the small non-verbal ways we are together.  Not having to formulate everything into words that must be compacted into short phone calls.  Sharing the quiet spaces of a new situation, without need for explanation.

When we weren’t able to do these things, it was always a big stress for us, and we have learned that it is important for us to try to be together as often as we can for those trips.  Our sensitivity to other people’s energy means that sharing the space we have together, to be process and just BE, is more than just “nice”, but sometimes more of a requirement.

This hasn’t always been an easy commitment for us to make – in terms of time, energy, and of course finances – but, it has made for some beautiful and supportive experiences together.

The wedding of Husband’s old friend is certainly the sort of event that I would want to be there with him for.  But of course, this time around, it comes at a time when I am very ill.  I have hardly left the house in months; even just getting showered, dressed, and into the car is a big drain.  Just talking on the phone is often too much.

This trip would entail those things plus more major complications, like a plane trip, packing, eating out, a hotel, socializing, etc.

I guess the fact that I am still considering going is a sign of how important sharing these experiences is to us, and honestly I still don’t know what the right answer is.

My husband and I both know that it is crucial to safeguard my energy right now, and that anything that could harm my delicate health needs to be really avoided as much as possible.

Even when doing so is frustrating or difficult emotionally, I really do avoid anything that is active or potentially straining.  I don’t go into town.  The domestic stuff I do at home is very minimal.  I nap and gently exercise and do the things that are good for me.  I rest in my cocoon and try to only use my energy for those things that directly benefit my healing.

I’m even not joining my husband in visiting with an old friend who is coming into town this weekend just because I know her energy will be too jolting for me now.

But even though going on this trip would so obviously hurt my health and damage my energy, somehow this decision doesn’t feel as clear cut as I might have thought.  The fact is that NOT going would also be stressful.  Stressful in a different way, but still a stress.

I would need to take care of all my physical needs by myself, support myself emotionally when my weakness overwhelms me, and struggle to connect with my husband in short spurts of conversation which wouldn’t adequately support either of us.

Honestly, I rely on my husband a great deal on an emotional level.  While that isn’t always the most healthy thing, I have been getting better about being clear about the times I really need support and when I need to be more self-sustaining.  And, the fact is, I need him sometimes for that.

I know that my husband also feels supported just by my presence, and I would miss that mutual support.  Plus there is the fact that he will likely be seeing people from his childhood whom he hasn’t seen in many years.  I would love to be a part of that.  It may nurture me on an emotional level

The first question in this is:  Am I even be capable of such a trip?  The next question is:  If I am capable, should I do it?

I’ve been writing this blog post in short spurts since we got the wedding invitation yesterday, and this morning I woke to strong body spasms, weakness, and a small seizure.  If I feel the way I do this morning in October, the answer to the first question is “no”.

There is no way to know how I will be in two months.  I may be better, or I may not be better.  I may be better but still not strong enough.  Who knows.

So, for now I will just continue to rest and work on my healing as best I can.  We’re putting off this decision a bit longer.  It’s possible we will make plane reservations for both of us on Southwest Airlines, and cancel my ticket if I can’t go.  (Southwest allows you to cancel reservations with no penalty, with a credit for future travel.)

I think that whatever we decide this will be a slight struggle.  We just need to make the choice that will be most supportive of what’s important.  We’ll see.

Frustrations and a treatment plan

Yesterday I had my second appointment with my LLND.  As before, it was helpful to get information from her; our meeting helped to clarify the direction we need to head in my treatment.

Although in some ways I was better than I had been in our last appointment (when I had been basically bedridden from a herx), I noticed that I was less capable of following the conversation and understanding what she told us.  For the most part, she and my husband talked while I sat with my head down and my eyes closed, trying to focus inward and will my migraine to stop worsening.

When we left I was thoroughly frustrated and overwhelmed and felt as though we would never be able to figure out the right treatment protocol for me.  Thankfully, my husband told me that he didn’t feel that way at all and he was actually completely able to understand what Dr. Peach told us.  He felt that we had been well directed in finding our next course of action.

So, while it is frustrating to realize that my mental abilities were weaker this week, it was nice to know that the reality is less crazy than I initially felt it to be.  We have a direction, and we have options to help us in that direction.

I think that the primary frustration I had when I left the appointment is one that will probably continue throughout my treatment, and is likely shared by many lyme patients.  That is that every piece of advice, suggestion, detail, or chunk of information has to be evaluated and researched.  A decision must be made about everything regarding how it corresponds to my personal case, history, philosophy, and inclinations.  And, no one person has all the information we need (including my doctor), or understands all the implications of their suggestions.

I have a disease that most people don’t understand.  Within that disease, I also have co-infections which most people have never even heard of.  And within this disease and co-infections, I have chosen to use a treatment with which most people with lyme disease and lyme doctors aren’t familiar.

Although Dr. Peach is open to working with us in our commitment to using my rife machine, it is very clear that she would prefer us to use pharmaceuticals.  We left her office with 4 prescriptions, just “in case” we decide to use them.  She would prefer we do.  Honestly, it’s nice to have the option to use them if we decide to, and to know that she will happily write us a prescription for anything we ask her for.  But, I also wish that we weren’t the only ones who understand and are committed to using the rife machine.

In my weaker moments it makes me just want to forget the rife and just do whatever she wants us to do.  But, I also know that doing so doesn’t necessarily mean I would get well any sooner.  So, I just need to stay the course.

Anyway, one thing that I brought up during my appointment was that I’ve been having more numbness in my limbs lately, and noticing poor circulation.  If I rest my hand or leg in one position for more than about 5 or 10 minutes, it begins falling asleep and going numb.  And, I notice my body tends to begin to get bedsores just from resting against a firm surface for a short period of time, even though I’m not currently bedridden.

I was interested to learn from Dr. Peach that this could be due to my Babesia.  Apparently red blood cells normally are in a sort of figure 8 shape, with a tapered center so that they can bend around the insides of capillaries.

However, when the Babesia protozoa are inside the red blood cells, the centers of cells are swollen from having foreign objects inside them, and thus are less able to bend.  This means that oxygen and blood can’t flow as well through the capillaries in the body.  (Please know that this explanation is coming to you from someone who only understood parts of what was said, but that’s what I got out of it.)

So, this was interesting and helped me understand this symptom more.

The upshot from the appointment was that it is clear we need to focus on treating my babesia before the lyme can be healed.  So, while we will likely still continue rifing for lyme, we are going to focus more directly on the babesia for awhile.  My husband did a lot of research last night and has sifted through things to come up with a preliminary plan for me.

The plan:

  1. Rife for babesia as frequently as I can handle.  For now, this will be atleast once a week, with the intention of increasing this over time.
  2. Begin taking some of the herbs recommended by Stephen Buhner for babesia.  This will likely consist of Cryptolepsis, Red Root, and possibly Artemisia Annua (haven’t decided on that one yet).

Today is one week since my last rife session, and I just stopped herxing last night.  So, I’ll start my first babesia-only treatment this evening.  Wish us luck!

Energy in relationships

I have a talent.  And, it is a talent that I have been working on getting less good at.  In general, I think I’m succeeding, but on some days it is clear that I still have a ways to go.  My talent?  I’m really good at attracting people into my life who want to take my energy and manipulate it to their own purposes.

Although I have been aware of this for years, once it became clear that I was getting very ill last winter I realized that I really needed to buckle down and make some difficult choices so that I could maintain energy for my own healing.  This meant looking at the people in my life and seeing the ways my energy was used in my relationships.  It meant deciding I was important enough to use my energy for my own healing rather than always giving it to others.

This doesn’t mean that I don’t care about people in my life.  Actually, it means the opposite.  I care so much about people in my life that for a long time I disregarded the negativity and drain that many of my interactions with friends and family caused.  With so many of the people in my life, if I didn’t give all of myself to them, then we couldn’t have a friendship.  And, I wanted that friendship.  So I gave.  And gave.  And gave.

My friendships and relationships were based on the premise that I would give, and they would take, and there would be no return on that scenario.  Most relationships naturally go through periods when one person is in need and friends help them, however ALL of my relationships fell into this category.  And, it became obvious that even when I was the sick person, the people in my life were simply incapable of returning the care I had shown them over the years.

This dynamic did not simply arise out of nowhere.  I can see quite clearly that I have attracted relationships of this sort.  Without going into all the nitty-gritty, this comes back to my mother.  In order to survive as a child I had to learn how to give to my mother without expecting a return on that energy, beyond basic survival.  My mother is a narcissist and she simply wasn’t, and isn’t, able to return this attention.

I think I’ve gone around looking for friends who act like my mother — who ARE my mother on some level — with the hopes that if I finally just gave enough, they would finally care about me.  My mother would finally care about me.  It’s kind of ridiculous, really.  But, there it is.  It’s hard for me to accept that I don’t need to lose myself in order to be in a relationship.  But, that is a lesson I have been working on learning this year.

With this unhealthy view of relationships I still don’t know how in the world I managed to attract and stay with my amazing husband.  But, I did, and he is a gift everyday.  He is a light showing me what true love and true relationship is meant to be.  And boy is it beautiful!

For most of my life I have defined myself by the relationships in my life.  If I managed to give a lot in all my relationships then I felt I was a good person.  So, suddenly changing my involvement in this is rocking the foundations of who I think I am.  It’s challenging me to acknowledge my true self, my real nature, just as I am.

But, changing the foundations of one’s life is seldom easy, and it becomes a whole lot less easy when you are herxing from your last rife treatment, started your menstrual cycle a couple days ago, and seem to have a slight cold.  (But, that’s just hypothetical, of course.)

Still, I’m looking forward to creating some new foundations in myself — ones that are based on a more true image of myself.  Ones that allows health and a renewing of energy, rather than a depletion of it.

I am slowly changing my view of relationships and opening to being in the kind of relationship that truly is mutually supportive and connecting.  And, as evidenced by atleast one new beautiful friendship I’ve made through this lyme journey (you know who you are🙂 ), I can see that I’m now better opening to the energy I want in my life.  Such a wonderful feeling.

Little by little, I’m getting there.

Random Friday

I’ve been wanting to update the blog this week on a few different subjects, but haven’t really had it in me for a well-outlined and in-depth post on any one of them.  So, coming to you this Friday evening, from LymeAware central, is your random update.

1) After my last way-too-intense rife treatment, Husband and I decided that instead of the usual 12-14 days we wait between treatments, we would wait atleast three weeks.  I really needed that three weeks.

In my previous treatments I had herxed for about a week, had a couple days of regaining my strength, and then felt slightly improved before treating again.  However, this time I herxed for a week and then really took atleast a whole other week to recover from that herx.

Yesterday marked three weeks since that treatment, and I have to say it was really important and nice to have some time to get back to feeling alittle more myself physically.  I don’t know if I necessarily feel “improved” this time around, but atleast I’m back to the level of functioning I was at before the treatment.

2) As is expected, today I’m feeling my lyme symptoms flaring again, and this fits with our plan for when we expected to resume our rife schedule.  So, I plan to have my next treatment tonight before bed.

3) You’ll notice that I’m writing this post BEFORE that treatment.  I admit that I’m alittle nervous about it, given the intensity of the last time around.  However, we plan to rife for a shorter amount of time, so it will likely be fine — just the “usual” level of crappiness😉

4) On Wednesday I got a phone call from my LLND.  I didn’t expect to hear from her but Dr. Peach said she had received my results from the Igenex lab test and since I’m not coming in until next week she wanted to call.

The result?  I tested positive for Babesia.  This should not have been a surprise to me.  I should have been expecting it.  From conversations with a friend, and Dr. Peach’s initial assessment it certainly did sound as though my symptoms pointed towards Babesia.  Still, I think I was in denial.

Somehow I had gotten used to the idea that I might have Bartonella and Mycoplasma, but becaues Babesia just sounded so much more complicated, I shunned that possibility.  Since I do have it, I’m very glad to know, but on some level it just feels like more.  More to learn about, more to research, more to take in.  Sometimes I’m tired of taking in more.

But, the good news is that somehow in my husband’s forward thinking, he already bought us a copy of James Schaller’s book on Babesia.  So, I have access to good information.  And, from looking around it’s clear that people have good success rifing for Babesia.  So, our overall approach doesn’t need to change — just the details.

Apparently it’s important to rife for Babesia more frequently than you would for lyme, since it has a short life span and reproduces quickly.  Whereas many people rife for lyme about every 2 weeks, it’s recommended to start rifing for Babesia once a week, and eventually work up to every other day.  So, we’ll see how we do with that.

5) The last few weeks I’ve noticed myself feeling increasingly burned out of being sick.   Not that being sick is ever incredibly pleasant, but usually I’m able to get to a some place of peace and rhythm with it.  Acceptance of where I am and acceptance with who I am in this process.

The last week or so though, I’ve just felt tired emotionally and been feeling alittle too defined by this space.  I haven’t left the house for the last few months except for our monthly mega health food store day and my trips to the doctor.  I think I needed a change of scenery.

So, we decided to do something fun and get alittle break from this today.  I knew that I would likely pay for it, but decided that on an emotional level my husband and I both needed something to nourish us — something fun.

Although I woke up feeling worse than I have in a couple days, I knew that this opportunity would likely not come again for awhile (with the rife schedule, Husband’s work, etc.), so we went for it!

We just got back and although I feel really wiped out and have a migraine, on an emotional level in myself and on a connecting level with my husband, I feel that it was worth it.  I’m glad we went.

We went out to see a movie (Inception), and then went to our favorite restaurant in town for indian take-out dinner.  Inception was awesome, and one of those rare movies that stays with you after it ends (which means I’m still enjoying it :)).  And we are about to sit down together to enjoy our take-out.

All in all, a nice feeling.  I think Husband and I were getting alittle too stuck in our roles as “sick person” and “caregiver”, and while he was still helping me on our outing, our date just felt very nurturing for both of us, and like we could connect as a couple on another level.  I really valued that.

6) Today feels like the end of a chapter.  Or maybe more like there is alittle post-it note marking this spot in the book.

I’ve gone through a rough spot and come out the other side.  I’ve gotten new information to add to the journey that lays ahead.  And, I’ve renewed some of my emotional resources to tide me over into whatever the next challenges may be.

It will likely still be hard, or it may be easier.  I may not be as prepared as I thought, or I may be just fine.  But, either way, I feel a bit more content in this moment.  And, I have to say….  that feels quite nice.

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