you never really know

So here I am a month in on my houttunyia/enula rotation.  And it's been tough.  I've just hit 25 drops (started at 20).  I haven't been sleeping well, there has been indigestion.  Belching - ugh! My intestines feel out of whack.  And I am going SLOW.  My brain fog is up and my fatigue is higher than the previous month.  I want to cry a lot.  I feel down and of course everything then feels harder.

Then two nights ago, I went to bed feeling okay, and actually slept through the entire night!  Without waking up 2 hours after falling asleep.... like I regularly do because of discomfort throughout my body. 

So why the shift?  I don't really know - it could have been a fluke.  It could be that my body is finally getting used to this rotation and not reacting as badly.  That happens with time. However... I am a little extra curious... as I am doing an exchange with a friend of a friend.  I'm helping her with Nutrition and she is giving me Access Consciousness sessions.  She 'ran the bars' for me for my first time ever on the day I slept through the night. I have done a lot of energy work in the past - some learning myself and I have also gone for various treatments.  Reiki, reconnection, allergy energy work, Chinese medicine, etc.  This one was a new one for me me.  And it felt a bit different.  Very light and gentle.

At the end of the session I did not feel profoundly different - although definitely 'lighter' and happier.  I smiled for a long time afterwards.  (Which was great in contrast to the 12 hours I had spent pretty much non-stop crying a couple of days before that!!!).

So yes, the night after my Access Consciousness session is the night I slept through.  And then I had a good day afterwards.  I even cleaned out closets and decluttered - AFTER dinner!  I never have energy like that after dinner.  I ended up red faced and feeling a bit woozy - as usual.  But I did it.  It felt great.

Then I went to bed last night, had trouble falling asleep, did not feel well at all while trying to fall asleep (itching like there were bugs all over me, general aches, chills and discomfort) and I did not sleep well again - woke a few times feeling gross.  So back to the regular ol' houttunyia/enula rotation pattern.  Weird.

I'm really interested to see if the next time I have an energy session I see such a difference again.

Happy Halloween :)

I've switched to my Houttunyia/Enula rotation and it is kicking my butt a bit.  On just 20 drops.  But this is always my roughest rotation so I'm not shocked. Feels like I'm on Benadryl and Red Bull at the same time.  Exhausted but strung out. Feeling drunk in my head when I attempt to converse with anyone. Oh well. So be it.

Nevertheless, I've been on this rotation a few days now and it's getting a little less intense.  Managed a good nap yesterday and a wee one today (unlike the days/nights before - exhausted but pounding heart/wired feeling).  And then yesterday, on Halloween, I made dinner and was also able to totally enjoy handing out candy to all the trick-or-treaters.  Chatted with parents, stood outside and watched the wonder of the night... beautiful, normal-people kind of stuff.

Two hours of trick-or-treaters at the door later, dear hubby and youngest daughter got home lugging a boatload of candy.  This child had never lasted so long in previous years - so she was pretty proud and pretty pumped.  The three of us took some time to catch up on each others' nights and then I ventured out for a little walk.  Time to enjoy all the decorations and cool jack-o-lantern carvings myself!

I strolled slowly around our block, appreciating the Halloween enthusiasm clearly expressed in the neighbourhood, and even had a good chat with a woman I hadn't seen in a few months along the way.

Shortly after I arrived home, my eldest was dropped off - she had been trick-or-treating with her friends in another neighbourhood.  So the mom and I caught up a bit, standing on the front porch in the beautiful night.  It was close to 9pm at this point - and I was still standing!

All in all, I didn't get to bed til around 10:30 and then was too wired to sleep - a combo of everything that went on, but mostly the potent houttunyia!  I finally was able to fall asleep around midnight.

I was tired this morning, but okay.  Really okay.

I like this soooooo much! My hope is high these days!  I may not be out of the woods, but I don't feel like I'm hopelessly lost in the scariest, darkest bits of it any longer.  Lyme can still frighten the pants off me if I think about it enough, but I'm focusing way too much on living to care right now.

But I hope I'm not fooling myself... Uh Oh...

After publishing that last post 5 minutes ago about how well I am doing, I just scanned back over the blog and realized I started my current Cumanda/Mora rotation mid-Sept.  And today, as I type, I'm still on that same rotation and only up to 25 drops.  I started on 20.

So I'm going slow.  Terribly SLOW.  I hope that is okay.  I hope it's not making me feel artificially 'good' when really I should be increasing my drops faster.  But when I do, I herx a tonne.  And as I just mentioned in that last post, my head feels like crap even at this rate. Sigh.

Hmmm.  I don't know.  I think I need to switch out to my next Cowden rotation in the next few days.  6 weeks seems like a long time to be on a single rotation - especially now that I'm on these maintenance rotations.

I will ask my doctor, but I don't think she knows either.  Trial and error.  Just not keen on the error part - this is a long journey without it!

Return of the fog and receiving to heal

Day three of my next Mora and Cumanda rotation.  This is generally my mid-level difficulty rotation. If I was to rank them. :)  Currently, after 2.5 years of being on Cowden (and many other supplements and various meds of course) I find I have the best chance of feeling good on Samento and Banderol.  I rarely feel good on Mora and Cumanda, but it's not as bad as Enula and Houttunyia.  So we will see how these next few weeks go.

With the new rotation, I noticed almost right away that my brain fog levels went up.  And my 'get up and go' seems to have left me for the most part.  What I do ever have of it anyways.  I think I notice so much because I'm coming off the Samento and Banderol.  Where I have the most clarity in my head and the most energy in my body.  So the contrast is obvious and of course a little depressing.

But maybe it's time to once again take a conscious look at what gifts this lack of both energy and clarity bring?  It's better than the other choice...

It's not that I haven't considered the gifts of chronic lyme before.  I have, many times. On some occasions in a state of actual happiness.  On other days in total desperation for something, anything, positive to hang on to.  To make it through. It's the premise I began this blog with.  Gratitude.  Life opening up in a way it never could have before.  The gifts of chronic illness. 

So far, in between the masses of heartbreak, I have found the gifts to be many. Although I still don't trust 100% in the process of letting this journey take its course. I desperately want to.  Believe. Trust. Let go. ( But I can't always. Why can't I?  WHY???????????) I'm honestly there sometimes and then there are many moments when the doubt creeps in.  And I have to talk myself out of it. My hope is that someday I will be there, most of the time, in that state.  And be able to anchor myself in it - no matter what may be happening around me. 

I, like so many of the rest of us, have learned through my education, my career, my mere existence in North American society... that the way to live is to come up with goals and then quickly achieve them.  And I got really good at this.  (Well, I think so!).  I can plan, organize, and get things done like nobody's business.  If you need someone you can rely on to follow through and make stuff happen - I'm your gal.  Well, I used to be. 

And now I realize that it, life, is NOT up to me.  It's not really up to any of us of course.  We just live in a culture that makes us believe that we can (and absolutely should!) be in control.  So we grasp at that concept and live in massive subconscious fear that this precious control may be taken away from us.  When chronic illness hits and all the planning and intentions and fruits of one's labours go straight out the window it's one heck of a shock. So we grieve and, naturally, try desperately to regain domination over our lives.   

I freaked out initially upon diagnosis and did my fair share of grieving and grasping at threads of control.  I could no longer work, lost my home, lost my ability to parent, lost my social life, lost most hope of ever feeling less than tortured in my own body... you know the drill.  Health and financial concerns skyrocketed. I went over and over budget spreadsheets hoping to make them work somehow.  Thinking that if I put in enough effort I could magically make life turn out okay - at least on paper.

And what about now?  It took me maybe six months to start (baby steps!) learning how to let go. I'm getting better at it.  "To let go, and let God" as they say.  I do believe it's the answer.  Or at least a huge part of the answer.  (And I've given up enough that I no longer believe I can ever really 'know' the answer - and I'm good with that!). The true way to live one's life.  And honestly, at this point, what other choice do I really have if I don't want to agonize through each and every moment?

Anyhow, I have been following Life Beyond Lyme Lifestyle on Facebook the last while (https://www.facebook.com/LifeBeyondLyme) and Angela had this cool little quote that inspired me.  Apologies as I can't remember the first half of it AND I can't even seem to find it again, but the second half of it said something along the lines of 'you need to receive to heal'.   I have read so much about healing being about loving yourself.  And if you think you are loving yourself, you need to love yourself even more.  And I can understand that conceptually but at the same time it wasn't really super sinking in... in a way that touched me at my core.  This last statement did. 

So I'm watching now... watching for the ways I can receive.  For the gifts that are naturally there for me.  To love myself and nurture myself more.  To fill myself up so there is so much more to spill over and give to others. 

What does more brain fog, less clarity, and less energy offer up?  Well, less talking, less thinking, more silence, less doing, slowing down, more resting, more hanging out, less frantic and hectic, more peace and calm. And I'm here - in case anyone needs me.  Someone to talk to, to listen, to hear.  I'm available for the most part.

Except for when you're fighting FOMO, there aren't too many ways to go wrong with more peace and calm and being able to be there for your friends and family. :)

I'll keep watching.  And being grateful for these beautiful spiritual and life lessons I am receiving.

Still going... and being made fun of

Well, a week later and I'm still going on the 30 drops of the houttunyia and enula.  And herxing in a way that's turning me into more of a cray cray person than I usually am.  It's not nice.  It's making me mad.  Why am I still herxing so bad?????????

But... in all this awful sick-o madness, I can still find some gratitude.  Gratitude that I have been well enough - for long enough - to even be able to feel the difference.

I used to feel this bad all the time.  Tired, bone tired, like my head is a massive boulder tired and my body cannot be pried out of bed no matter how hard I try.  "Sick tired"!  (LOVE this post on 'sick tired' - describes tick borne illness fatigue incredibly well!) I actually used to feel much worse than this. So, it's super fantabulous good news really. (I remind myself of this frequently!)

But my attitude in general is extra pissy!  Dear hubbie came home from work the other day and my daughter told him, eying me up sideways, "She has been like this all day!  Complaining, whining.  I feel so bad.  I'm so tired.  I have to lie down.  AGAIN!".   She was right on the money about it all too. In my defense, I felt I held it together pretty well for getting them fed, out the door when I needed to, etc, etc.  All the little things you do that add up quickly to hours of work but that your kids don't even notice.  However, in between all that, I may just have complained several times.  It was actually pretty funny how she called me on it.

(HA!  I also have gratitude for when my kids make fun of me!!!)

However, it's been a month and a half on the same freakin' rotation and here I am herxing and herxing.  Up all night for a couple of nights in a row now too.  That twitchy bugs-crawling-all-over-you restless but exhausted feeling lasting until the wee hours of the morning.  Finally falling into blessed sleep only to have to awaken a couple of hours later to start up on all the sweet meds that are doing this to me... yet again.

Healing me.  Healing me!

Anyhow, there it is.  I am grumpy.  I am sick tired.  I am in need of an attitude change apparently.  My family is once again out enjoying the summer without me because I'm too sick to pull myself out of bed for any length of time.  (See, whiny lady!!) 

There is that gratitude though.  And I'm a little proud of myself too.  Proud of how I went through literally years of feeling this bad (worse) while sucking it up as much as possible and pushing through with a postive attitude for the most part.  Between the hours filled with worries and fear.  Learning to keep faith.  Learning to look at this minute, not the future.  Remembering to look at what I have now - and what I can do with that - versus looking at what I think I may have lost.

So, once again, I will not focus on the boredom or frustration, but will consciously relax as much as my anxious and twitchy body will let me.  Into the soft bed.  Into the pillows.  Breathing into the tight muscles and letting go of the headaches and body aches. I will enjoy the peace and quiet of a house to myself.  Look forward to the stories brought back to me from the world by my family. 

maybe too fast, but I did it

Since I wrote a week and a half ago, I have increased my Cowden drops from 28 to 29 drops.  And then again, on the full moon, to 30.  I have read that a full moon really brings out the spirochetes and that it is hence a great time to blast them with antimicrobials.  My ssymptoms flared up with the appearance of the full moon anyhow - so, with fear in my heart, I went for it. 

I wasn't actually that scared. It was more like dread.  After two and a half years of this, I don't like big herxes.  The first two years, I herxed almost non-stop.  I think it was necessary - I was that sick.  And I needed to blast the bugs to make progress.  Now, I continue to make progress, but I've slowed down the blasting rate.   I could be at this, treating this disease, for several more years to come.  (And I don't want to think about it if it will actually be for the rest of my life, so I don't - one day at a time!).  And if I can help it, I don't want to be so super sick from the herxing on top of everything the lyme and bartonella are already throwing at me.

So increasing to 30 drops that quickly did end up making me herx.  Badly enough that I had tongue and throat swelling by noon for the last few days, difficulty speaking clearly, massive brain fog, pain, that feeling of bugs crawling all over your skin, exhaustion, irritability, headaches.   And hives.  It's summer and my arms and face do not look pretty right now.

But this is consistently my toughest rotation - the houttunyia and enula - and now I'm finally at the desired 30 drop dosage.  I made it!  I'll go for another week or so and then switch to my next rotation.  Samento and Banderol on the horizon.  I'm excited.  I'll be vacationing in August (staycationing is more like it!) and Samento and Banderol are the meds I've been on the longest.  And that I feel my best on.  Hooray!

Looking forward to it.

fabulous biking, no progress on the drops

Here I am almost a week after my last post and I have not been able to increase my Cowden antimicrobial rotation drops at all.  I'm still at 28 drops!

Symptoms seem a bit stronger than earlier too.  But I'm not sure.  How can you be sure when there are so many symptoms in your body and they are so strong, yet so subtle.  I say 'subtle' because I am convinced I ignore most of what is going on symptom-wise most of the time.  This isn't to say that I don't take care of my body (+ mind + spirit!) in the absolute best way I know how on any given day.  But if I focused on the symptoms, I have little doubt that I would go out of my mind with frustration and suffering.

On second thought, I may have actually already gone out of my mind with frustration and suffering even without focusing on them.  HA!

Anyhow, is a week at 28 drops okay????  Am I doing this wrong?????  When will I feel well enough, confident enough, to increase again?  How many freaking weeks will it take me to get to 30 drops???? I can't know.  So I just keep moving forward (or not, HA again!) day by day.  We have been on short little bike rides every day or two.  Still 100% in love with it.  I can only ride on smooth pathways - bumpy roads are agonizing.  But we live near a gorgeous bike path next to a river.  So, how about that awesomeness??!!  Lucky.  But what I mean to say when I talk about the bike is that maybe it's not the 28 drops, but rather the new activity that is keeping me at this level of meds.  Maybe it's a combo.  Maybe the biking has nothing to do with it.  Again, who knows?

Grateful for the tandem bike loan.  Grateful for the bike path.  Grateful I have a husband who is willing to do all the work on the bike - essentially towing me along until someday I have regained the endurance, strength, balance and judgement to be able to ride on my own again.  Grateful I can bike alongside the kids for the first time in half of their lives. Grateful that it doesn't matter if I ever get that well again - I can still bike!

And hoping that these days of 28 drops on Houttunyia and Enula are doing great, great things in my body.

A little bit of biking!

Here I am - nearly a week since my last post, and I have just increased my Houttunyia and Enula dosages to 28 drops today.  This means it took me a full week to go from 26 to 28 drops.  It's slow.  But I'm living a little bit. :)

The kids were at the Grandparent's place for three days last weekend.  That meant hubbie and I had some free time together - wooeee, baby! I love my kids, but oh do I also love the freedom of not having that responsibility once in awhile too.

So, we packed in the frugal, uber-relaxed fun.  What do other lymies do for fun?  We are on a super tight budget, so spending in any big way is out - no shopping sprees, expensive dinners, movies and popcorn, hotel mini-vacations, spa days, etc.  And of course my fatigue and brain fog are huge still too (much better, but huge compared to a healthy person).  So we can't hike or run or zip line or anything like that either.

We ended up going to the beach for a wee walk in the water - just up to our ankles.  Heaven feeling the sand under my feet!  Water is super grounding for me too.  Then we sat on the beach for a long time.  Chatting and chilling.  We did actually go to dinner too.  But we tend to go to an organic, vegetarian place where you pay by weight.  So I get a LOT of salads.  Which I enjoy because I rarely have the energy to make these at home - a real treat.  And the food is actually safe for me to eat at this place.  We also went for a little walk around a downtown neighbourhood (my husband drove us there in the car).  We both love the architecture of the old houses as well as the lush, full gardens and mature trees in these types of neighbourhoods.  Inspiring. Tried to watch a movie one evening at home but we were too tired.  The evening before we went to a movie out - a real movie at the cinema!  This isn't in the budget, but we ask for movie gift certificates for birthdays and Christmas gifts.  A total mini-break from reality.

So these are our date night ideas... walks, a cheap and healthy bit of food out, nature that is close-by, a movie treat.  Sometimes we people watch too.  Sit on a bench in a busy area and just hang out.  Pretty fabulous considering I spent over a year primarily in bed and in pain, but I still wouldn't mind more ideas. 

(And of course all of this fun - with ample resting in between mind you! - resulted in the worst symptoms I have seen in awhile. Major word slurring, brain fog, more body pain, etc.  But I didn't care!)

I need to get to the coolest part of this post though!  We ended up at an end-of-school party for the kids near the end of June.  The host family happened to be a car-free family with a bunch of bikes.  Hubbie and I had previously played around with the idea of getting a tandem bike - so I could sit at the back, barely peddle, and not have to balance or steer.  I miss biking with my family! We searched for a bit on kijiji, but quickly realized that tandem bikes are pricey - way out of our budget.  And we didn't even know if I could actually do it.  Well, this generous family were going out of town on vacation and have just lent us a tandem bike for a few weeks!  We went for our first bike ride two nights ago.  The first time I have biked in literally years.

I adored it.  Do you remember how it feels to bike?  I don't even remember what it feels like to walk without pain - never mind run, or swim, or jump...   We went for a 20 minute ride.  It was scary and a little painful, but mostly massively awesome.  I could cry with the joy.  It's hard to absorb, it's that great.

Right now, for the record, I can walk for about 20 minutes on a usual, 'good' day.  And I'm sore, and sometimes feel like my ankles will give out, but I do it.  Riding in a car as a passenger - with pillows beneath and behind me - has the pain start at about 40 minutes into the drive.  At an hour it gets bad.  If the road is bumpy (Ontario roads!) I end up in tears from the pain. 

So being able to bike - just for a little bit - feels like a miracle.  Gratitude for little miracles!

Summer heat and the best Houttunyia/Enula rotation ever

It's been warm warm weather the last several days and I am in love with it.  Temps have been close to 30 degrees with a humidex closer to 40.  It feels so good to my body.  I'm not bundled up in a tonne of layers all the time - and still freezing.

I'm also doing fabulously well on this Cowden rotation!  As I mentioned in my last post, the Houttunyia and Enula are usually my roughest rotation.  Not usually actually - always.  I've just hit 26 drops and am feeling pretty decent. Relatively speaking of course.

The agitation and wanting to hyperventilate feelings seem to have passed for the most part too.  I don't feel completely settled and grounded, but it's way better.  I can nap more easily again.  My energy is such that I do have to sit and lie down for brief periods in the late afternoons and evenings, but not so bad that I'm in bed from dinner onwards.  I don't even want to be.

It's blowing-my-mind incredible. :)

So there is my update - I'm doing the best I have done in years and the hot weather is probably helping too.  My only concern centers around thoughts that perhaps I am going too slow on this rotation - taking too much time to ramp up the dosage.  I need to get to 30 drops and I'm already at 24 days.  If I followed the Protocol directions perfectly I would already be on my next antimicrobial rotation.

But that's what I have done for over 2 years.  And herxed like crazy the whole time.  My LLMD says I can try this as long as I still keep getting better.  I don't know how long it will take to know.  Willing to give it a few months to experiment though.

getting better at balance with lyme

I haven't posted in a week because life has been so busy.  What is it with kids and June?  All the school's-almost-out activities and last minute To Do's.  And everyone with a summer birthday cramming their party into June.  Don't get me wrong.  It's a fun month.  But wow, we are ready to slow down.  2 weeks to go!

I ended up coming out of that last herx and doing really well last weekend.  So well that I was out wandering around an outdoor street festival in our neighbourhood for 2 hours on Sunday with my fam.  And then I walked home!  At a normal pace!  It's only a 20 minute walk, but I hobbled at a snail's pace when I attempted the same thing a year ago.

Bonus was that I didn't feel like going straight to bed when I got home!  No spinning head, no aching body.  Well, a tiny bit.  But not enough that I was anywhere near the state where I could no longer handle standing or sitting upright.  I actually made lunch for my family after sitting outside in the hammock to regroup.  LOVE this. 

I think this is evidence my 'go slow' idea with the Cowden drops is working. I have a doctor's appointment next week and will discuss it with her.  I'd love to keep it up if it won't impede healing progress. Can you imagine a life of healing so much more bearable and, heaven forbid, fun along the way?  I dare to dream.

This last week has been a bit up and down in terms of herxes.  I've actually had an activity booked for every day.  From a 2 hour tea to a track and field meet for my kid to a dog training session for my unruly pup.  So nothing more than a couple of hours per day for the most part.  And I'm still napping daily.  I'm stronger and less fatigued and hence my activity level is up.  I haven't figured out how to balance my body quite right though.  Going in and out of herxing and I think maybe I don't need to... 

Yesterday was terrible. I actually ran out of the Cowden drops for my current rotation (Cumanda and Mora).  Poor planning! ACK!  So I did an early 'in between day' where I am off the antimicrobial drops and only on the herbal detox drops.  I usually look forward to and cherish these days as I feel so good on them - no herxing.  Well, clearly I had messed up my balance as I had a lot of fatigue, tongue and throat swelling, headache, plus general malaise going on.  My only conclusion is that it had to be the stress of the busy week.

Proof right there that this balancing act with lyme isn't easy.  My friend likened it to walking a tightrope - the smallest thing can knock you right off. 

Will keep practice getting better at it though - this is life right?  Everyone, lymie or not, has to come to know their own bodies and spirits deeply so as to keep that delicate balance of enough rest, enough play, enough nourishment - all on a daily basis.  Lyme just takes the whole deal up a notch - keeping us on our toes.

progress and pauses...

Well, I've hit the threshold of my 'go slow' idea with the Cowden Support Protocol.  I just hit 26 drops on my most recent Cumanda and Mora rotation and I have been herxing for 2 days now.  Red face, swollen glands and throat, wicked headache, body aches, not sleeping well, fatigue, irritability.  Up until now though - up to 25 drops - I was doing pretty well!  As well as I ever do.  I was increasing drops about every 2.5 to 3 days.  Versus every 1.5 to 2 days like I normally try to do.

So...  will the theory still work?  Do I just need to slow down?  Maybe go from 25 to 30 drops by increasing by 1 drop every 3 or 4 days?  I don't know... I will continue to experiment.  I'm not going to drop down to 25 drops to get through this herx though.  I'll wait it out.  Lots of detoxing.  Water, smoothies, green juice, fewer grains, rest.  Grains really seem to trip me up.  Especially at dinner. 

Half an hour after dinner the last 2 nights and I feel terrible.  I don't know if it's from eating - and the extra energy my body must use to digest the food.  Or whether it would happen regardless of eating - as I tend to have symptoms worsen as the day progresses anyhow. 

Doesn't matter.  I'll keep trekking along and see if I can play with this to reduce the herxing.

After mentioning some of this to a friend yesterday, I had her ask me how I do this.  How I get through each day living with chronic lyme disease.  Trying to live while feeling like I have a horrible flu most days.  And just a mild flu on the few and far between excellent days.  I deeply understand the question - the suicide rate for chronic lyme is very high.  It's a hard disease to face day after day, year after year.

And I'm not entirely sure how I do it.  Or if I'm getting better at it. I hope so. There is less panic than during the time I was misdiagnosed, and also less than during the first brutal six months to a year after diagnosis and starting treatment. But I am better physically now than I was then too.  Which makes it easier to keep it together emotionally.

I take things a day at a time.  Because thinking about the future and the past can both freak me out if I am not careful.  There is so much grief, and there are so many unknowns for the future. I do know that I like life and I don't want to give up.  I'm not ready to be done yet.  It's the hardest thing I have ever had to do - facing what feels like endless days (and often endless nights) with symptoms that are very uncomfortable at best and terrifying at their worst.  And of course you never know, one day to the next, what you'll be facing symptom-wise.   Sometimes I can give an educated guess.  But generally they continue to surprise me.

After plenty of thought, I finally realized that this is really no different than what anyone has to face being in a human body here on earth.  None of us know what tomorrow will bring.  Most of us have had difficult times in the past. Most of us are dealing with daily challenges of some sort.

Chronic illness is a unique challenge of course.  And I expect there are both similarities and differences in how all those going through it handle it emotionally.  For me, to get through and not go absolutely cuckoo bananas, I constantly bring my mind back to positives.  To gratitude for what I DO have.  Versus being non-stop upset about the losses.  The losses are constant of course.  From not being able to travel to an important family event, to losing your temper with your kids, gaining control, and losing it again within a span of 3 minutes. Over and over and over.  Thank you lyme rage!

I can't compare myself or my life with anyone else if I want to stay in a good place emotionally - who I used to be, what I want to be, how my friends or neighbours are, how my family is.  It is too hard and makes me feel bad.  So I stay as much as I can in the now and in gratitude.

Today, gratitude includes that my fingers are mostly cooperating to type.  Gratitude that I can share these thoughts in hope that they may ease someone else's journey - just knowing we're not alone - there are others out there going through hard stuff.  Impossible to comprehend hard stuff.  Gratitude that while I can't take my children out to do something today (it's a school PD day), that I can at least sit here in the house with them.  Gratitude they have a mom.  Gratitude for looking out the window at the vibrant colours of the grass, trees and plants in my yard. 

The little stuff that is really the huge stuff.

This is my life right now.  And it's amazing when I choose to let go of the fear and focus directly on the wonder and sheer fun of it. So a lot of the time I do. 

My pup

I'm back, it's been a full week! A week where I was a bit better again. That last flare lasted another day and inexplicably went on its merry way. Or maybe very explicably considering all the alkalizing I did.

I'm still on track with my new plan to increase my med dosages very slowly to hopefully avoid the nonstop herxing I usually experience for weeks and months at a time. Too early to tell if this is going to be at all successful, because I'm just three days in to my newest herbal anti microbial rotation. I'm supposed to be at 30 drops of Mora and Cumanda for this one. I started at 20 and am up to 21 today. I've had joint swelling in my right hand and weird hive like bumps on my skin. But that's it. Usually I would take these symptoms as essentially nothing and increase my dosage more quickly - to a level just under what I would find completely intolerable. Aiming to keep it at 'actually feeling kind of okay' this time. For as long as I can.

Wish me luck.

But you the keen reader might wonder, why are you back in bed and posting if you are still feeling good like you say you are? Well, it turns out it's because of that extra gift that comes along with being female... My time of the month. PMS'ing right now and it is making me super tired and sore. How do I know it's not the antimicrobials? I can't for sure logically, but I know my body and this is PMS.

My gratitude this rainy afternoon? All of the above. Feeling good, inspired with new ideas, being a girl and honouring my body's cycles, but also my pup. You can see her in the photo. She's sitting so tightly beside me, pressing into my thigh as I type. Offering comfort, warmth and love.

Good days

I haven't posted in a little while simply because I haven't been lying in bed as much.  How absolutely freakin' fantastic is that?!  This has happened to me a few times now in the nearly 4 years that I have been sick, and 2 years that I have been under treatment.  Literally, a FEW times.  Once last fall, once in December, once in January, and now this last week.

Yippeee skippy, happy days!

I like this.  A crazy lot.

I'm on my best antimicrobial rotation - Samento and Banderol (Cowden Protocol) right now.  The one I have been on the longest.  The one I now herx on the least.  It's my first week on it for this go round and I have been up'ing my dosage very very slowly.  Trying a new idea out...  What if, heaven forbid, I increase my dosage drops at a rate that does not make me herx to the point where I feel brutal all the time?  And the answer to that question is that I honestly don't know.  I love this protocol.  I'm healing.  But I herx nearly all the time and hence am an inflamed, sicko mess nearly all the time.  Pulling myself through the days on sheer willpower, faith, and feigned enthusiasm.  Which are all great - but how about giving myself a break for a bit?

This is what I want to try.  Not much of an experiment when I start out on it with my best rotation.  But, I have to start somewhere and this is the next one up. It doesn't hurt that summer seems to have appeared out of nowhere too.  Snow two weeks ago and 27 degrees today.  Such a relief!

I've still been in bed enough.  The usual nap-time calling my name from 12:30-2:30 each afternoon.  Forcing myself to get up when I wake up.  Bed enticing me to retire for the evening at 7:30 pm or so...  But the time I'm up in between isn't as difficult as usual.  I'm in a better mood because my head isn't spinning and hurting as much.  My body still hurts too, but maybe not as much either.  (I don't know - I tend to ignore it a lot to keep the positive vibe going). I'm more active though.  Doing a bit more, sitting a bit less.  Did some weeding in the garden, took not one, but two walks with my child - even took the dog along which usually I don't have the patience for.  Cooked a bit, cleaned a bit, a few loads of laundry, swept the decks and patio.  Fun, fun, regular person weekend stuff.

I love the good days!