Like sand through an hourglass

No, I've never been a Days of Our Lives watcher (if that's even the right soap opera that phrase comes from).

Yes, I have been getting better - most of the time, overall I think.  I'm still dead tired, having temperature regulations problems, tinnitis, dizziness, headaches, neck pain, and my right knee really hurts, but none of that is nearly as bad as it was a year ago.  A. year. a. go.

We're working on refinancing our mortgage and the woman at the bank was asking me about my work history - ha.  Since I've been too sick to work (except for these great couple of months before I got too worn out again in the fall), we have to do some extra leg work to do this refinancing business.  So naturally, this dear woman was very curious why a perfectly normal-looking person is sitting in front of her telling her she's too sick to work.  She vaguely recalled something about Lyme Disease and inquired...is this STILL Lyme Disease?  And the answer was, Yup.  Since August 2011.  That's when I got all weird in my head.  It's 2013.  

I've been sick for approximately 1 year and 7 months.  1 year and 7 months of feeling lousy isn't that bad, but 1 year and 7 months of wasted productivity is.  And don't get me wrong, I count myself lucky - there are plenty of people who are far sicker than I am, have no access to healthcare (thanks a lot, for-profit healthcare system), and have been sick for 15+ years.  I count my blessings.  

I just wish I could work on all these projects I used to work on.  Or could have the energy to make my husband dinner every night.  

This is when I have to remember the key to all of this - thankfulness!  No, I couldn't spend 5 hours today working on my projects, but yes, I was able to eek out one blog post!  No, I didn't have the energy to stand for 45 minutes to wash dishes, but yes, I was able to bring all of them to the kitchen.  Don't spend your energy or your time focusing on all the can't's in your life.  That won't be worth your time.  But feeling better about what you can do is well worth your time. 

This mold house

Mold, mold, mold.  Ahhh, that terrible, invisible, frightening thing.

Mold is a big problem, even if you don't have Lyme.  And when you do, it's a double whammy of neurotoxins.  But take heart, there are plenty of things you can do to make your house safer and healthier that are pretty cheap.  (And of course, there are things you can do that are not very cheap)

My LLND told me that I should get my house checked out since many of my symptoms appear to be more mold than Lyme.  !  We started out with a vision test for $15 that you can do entirely online, she said this would give us a good indicator as far as how moldy my body has become, and based on those tests we would consider how to treat or further testing that costs more than $15.  And here it is:  http://www.chronicneurotoxins.com/.  The premise is that certain biotoxins affect your vision in a very specific way and this vision test can be an indicator about the biotoxin level harbored by your body.  I failed it miserably, and so she ordered a C4a lab test - this is an indicator for the mycotoxin load my body's carrying.  (Mold spores themselves whether dead or alive are an allergen, but the living spores also spray out what's called a mycotoxin - this is the big, bad thing that sticks in your body and tries to decompose you).  We're still waiting on the C4a results, but based on the mold testing we did on the house (which came back positive for the most poisonous and the second most poisonous mold), my doctor put me on Difflucan, an anti-fungal to get started on some sort of mold-clearing.

So the issue with mold is that it's a neurotoxin - like Lyme.  And my doctor put it really plainly as far as the importance and urgency of clearing the mold - both from my house and my body.  She said that Lyme wants you alive, it wants to disable you a little bit so that it can thrive - but Lyme needs you alive; mold doesn't.  Mold wants to kill you and decompose your body into nothing.  

We were able to get our house professionally remediated and we found the source of the problem - leaky basement and leaky pipes.  Getting those fixed is the big picture, but there are lots of other little things we're doing to ensure we have a healthy house.  (This two-pronged approach is best - eliminate the source that's causing the mold and eliminate the mold stuffs already sprayed into the air.)  

Dehumidifiers are essential for damp areas like basements, as well as real HEPA filters in air purifiers (careful with this, lots of air purifiers have really sneaky wording so you have to be sure that you're getting one that truly captures mold spores, as small at .2 microns in size).

Aside from those, a new thing I discovered is Thieves essential oil, the air inspector said that she's seen it work wonders - she's seen spaces go from 25,000 particles of mold per square meter down to the normal 400 particles per square meter, after only spraying Thieves Household Cleaner on mold 2x/day for 2 months!  I found the recipe and made my own and have it running in an essential oil diffuser 24/7 (bonus - it smells kind of like cinnamon and spice, perfect for autumn!).  I also learned that getting a German made vacuum with a closed system and HEPA filter will be an item to save up for.  Normal vacuums, even ones with 'HEPA' filters recycles the air, but the German made vacuums are actually better at cleaning the air than air purifiers - the air that comes out is cleaner than the air that goes in!  

Cleaning is also essential - we are now spending much more of our time sweeping, vacuuming, and dusting because dust is the perfect little thing for mold to attach itself to, it's great at riding the dust.  At this point, we're still cleaning out the hyphal parts (dead mold spore pieces that are still an allergen).

But now, I can breathe again!  I'm still sicker and it will probably take a while for the mycotoxins already present in my body to get cleared out, but we'll get there.  One day at a time.  Just imagine how much healthier I'm going to be when my body is free of mold and can focus more on executing that Lyme!  (Also I feel extra scatter-brained today, so sorry if this post didn't make very much sense, you know how that goes)

Pilgrimage

Pilgrimage: noun; any long journey, especially one undertaken as a quest for a votive purpose. 

So this being sick all the time thing is definitely a pilgrimage.  It's long.  It's a journey.  It's undertaken as a challenge, albeit involuntarily.  The purpose is to survive and get better.  

And boy, am I feeling the challenge right now.  I had one month of near-well health - energy, hardly any headaches or pain.  It was such a sweet reminder of the goal I'm working towards.  So I started to set my life up again - working, resuming classes, even planning my husband's 30th birthday party.  Then, WHAMMO!  I got sick again.  I am resuming treatment, this time with super hardcore, high dose antibiotics (I was able to get away with relatively low dose before) and I'm doing all the things I'm supposed to be doing to get better.  Only now, I have work, school, and this party-planning to do.  Things were so much easier when I could just stay in bed and be sick.  I have no idea how people do 'being sick' AND work, classes, or any other obligation.  I commend you, true Lyme Warriors, I know you're out there, working hard and being sick and trying to hold it all together.  And in way more dire circumstances than I am right now.

I think at this point, I would rather have less functioning and more pain rather than where I am right now.  I have some pain and some functioning, but not enough to meet all the expectations I've committed to.  Even after already cutting those expectations in half.

I feel totally lost.  Totally inadequate.   I have no idea how I'm supposed to organize the mold remediation that has to be done (oh yeah - did I mention we discovered we have the most poisonous mold and the 2nd most poisonous mold in our house?  This is making me even sicker.)  I can barely get through a 5 hour day at work.  I can barely drive.  I've outlawed myself from driving on the highway because I had some close calls. Apparently I can't even keep my brain on long enough to pay attention to driving.  My dear sweet husband has had a bad year and it's his 30th birthday and I wish I could just keep the details straight and simply plan a freaking party for him.  But I find myself not remembering where we are going, what we are doing, or all these other details, let alone how they all are supposed to fit together.  This is something I normally would be all over and it would be awesome.  He really, really deserves just one fun night.  And I totally wish I could give it to him. 

I suppose it's just time to be honest with myself and everybody around me.  I just can't do this stuff right now.  Not that I won't be able to once I get better (whenever that's going to stick), and not because I am some sort of invalid person.  It's really simple.  I'm just too sick right now.  

On the bright side, once we figure out this mold situation and we get it all resolved, I'll probably feel a ton better, right?  

In the meantime, I'll just keep chugging along and doing what I can.  Counting the blessings that I do have, and trying not to think too much about the rest.  

There.  That felt good to get out.  Now, for the icing on the cake, I'm going to go emotionally eat.  Probably some popcorn. 

Tease

What a tease.  Some of you out there may know that I was able to begin work a few weeks ago - antibiotic-free, relatively symptom-free (well - less symptoms, enough where I could get through an 18 hour a week job anyway).  By and large, it was going quite well.  Until.

Until I spent all last weekend (it's Thursday as I write this - I think) in bed.  It was all too familiar.  Tired.  Headaches.  Stiff neck so stiff it was just roaring, unabating pain.  I spent this whole year that way, if I had the presence of mind, I would have been more upset about it at the time.  

Not long ago, my dear sweet husband moved the couch and discovered mold on the floor.  Black mold.  (Ughhhh)  He then valiantly proceeded to eradicate it and I had the bright idea that we ought to refinish the floors (it had been a long time since that had been done.  We were getting slivers!). WE.  Hahahaha.  (For the record - I really did mean 'we,' and it did start as 'we' before it went to just 'he.'  That super awesome man did the whole thing - sanding, staining, polyurethaning).  

So we weren't sure if I was having an acute mold toxicity issue or maybe it was stress from work, but something put me DOWN and out.

I went to the doctor today and got a glutathione injection as well as a vitamin D injection.   We deduced that it is both - I've got a mold toxicity problem AND the Lyme is coming back.  Great.

I feel so done.  My trained brain (that is - the brain I've trained to be hopeful despite hopelessness, to see the bright side in spite of all the darkness, to seek things to be thankful for  rather than to seek things to complain about) is telling me that 1 year is a phenominally fast recovery.  And of course, naturally a set back is to be expected and even looky-here, we caught things nice and early before I had too much of a regression, so I'm still sittin' pretty and doing well.  True.

But my lazy, strictly reactive brain and feelings are so done.  I am so sad and mad and frustrated that more time, more resources, more energy have to be spent.  And here I was thinking I could host this grand 30th birthday for my husband at the end of the month (who so much deserves it).  Now I get to talk to my boss about taking breaks and working less.  And I get to drop a class again.  And I get to spend a bunch of money again.  

I really do feel like throwing a little hissy fit and just crying and stomping around.  I did some of that today and it did seem to help.  Plus, I guess I would rather be optimistic and happy than grumpy and upset.  We'll see.  Maybe I'll go back and forth for a few more hours today.  

What a tease.  4 weeks of relative freedom from sickness.  But, it ok.  I would rather have had them than not.  

Months of penicillin, here I come.  

Here we go

A rather monumental date for me is coming up soon and it's leaving me feeling all kinds of stuff.  I'm a little bundle of emotions.  ;)

Last year, on August 13th, 2011, I laid down in my Wisconsin backyard to watch the Perseid Meteor Shower.  Being the impulsive person I am, when I got home from working late that night, I just went right out and plopped myself down in the grass, no bug spray, no blanket to lie on - who cares, I was just going to be in my own backyard doing some stargazing for a bit. It was cool, clear, and the grass was a little pokey, but mostly comfortable.  The air seemed fresh and refreshing, it was nice, save for the bug bites that started after a little bit. 

That was the night I got the bite that gave me Lyme Disease.  And I didn't see even one meteor, either.

As if set on a timer, 2 weeks exactly after that night, I developed quite substantial joint pain and headaches, and there started my journey with chronic illness.  

I can't believe it's been about a whole year.  I count myself oh so very fortunate (blessed?) that I am honestly about all better.  It mystifies me that I had the right group of healers, right family, right husband, right everything to guide me through this whole mess in only one year.  It's like everything was set up just for me to have what I needed.

It's hard to believe that I had months of late assignments and dropping classes before withdrawing completely from school last fall.  And now, in less than a month, I will be picking up where I left off (just 2 classes though - the easiest ones).   

It's hard to believe that about a year ago, I became completely unreliable at work (a grieving process unique to those who get sick or injured, I think).  And soon, I'll be starting work again with a very understanding boss who knows my whole medical history.

I'm enormously glad to pick up my life again, slowly, with caution, but with an overwhelming amount of gratitude that I even get to try.

What a year it has been.  And I really do think that this episode of Lyme is just about at its close, that is, until I have some kind of trauma like a car accident or a surgery.   Hahaha.

I do have plans to watch that meteor shower this year, perhaps from the seat of my car, or slathered in insect repellent sitting on a lawn chair.  Maybe I'll get to see a meteor this time.

It ain't about how hard you hit.

It's about how hard you can GET hit,

and keep moving forward.

It's about how much you can take,

and keep moving forward.

That's how winning is done.

                   ~  Rocky Balboa

Pink angels, huh?

Lyme Disease, grief, fibromyalgia, depression, and plenty of other illnesses are invisible, you can't plainly see that a person is suffering because there is no visible proof.  As people who suffer from invisible illness, we are pretty aware of how powerful and real something you cannot see can really be.  


I'd like to tell you about something profoundly personal that happened to me.  Probably the most personal thing I will ever share with one simple click.  You don't need to believe it to have happened at all, let alone to be as significant as I believe it to be, but please be respectful to me after you read it.


Just shy of 12 months ago, my mother-in-law died of pancreatic cancer (you may have been wondering why I keep mentioning grief as an invisible thing that makes you suffer, this is why).  She was wise, fun, artistic, and deeply spiritual.  She left behind many pieces of art - poetry, children's stories, but mostly paintings.  When we got all the stuff printed up for the funeral (the memorial cards, thank you cards, etc.) we had one of her paintings printed on the cover - an angel with the handwritten verse: 'See, I am sending an angel before you to guard you along the way. Ex 23:20'  We thought that would be especially significant and nice, since she had painted an angels series and given one each to her 5 children. 


As I've been healing and getting better, I've been trying to make up for the last 10 months of little attention paid to my spiritual well-being, what with pretty much all my energy put into my physical well-being.  It probably has a lot to do with the 1 year anniversary of my mother-in-law's death just around the corner, but I've been doing a lot of reflecting on the spiritual nature of things, outside myself.  You know, all that invisible, yet powerful stuff.  But there was an event that started this new focus.


I was talking with an open-minded someone (who has a medical background) about my health and we were talking about my fever and my joints, it was kinda like a doctor's appointment.  We were both thrilled and excited that I seem to be getting much better. When we were almost done talking, she said, 'and why are you pink?'  I looked at my arm, it didn't look pink to me, I did feel a little flushed so I replied, 'I don't know, I'm kinda hot right now.'  Then she said, 'no, I mean an aura, there's pink all around you.'  (Now I know what you must be thinking - it's kinda weird when people say they see colors around people.  Maybe they do, maybe they don't.  Who knows why or why not, but remember I'm speaking with someone who has a medical background and is also open-minded, not a grass-skirt-wearing, patchouli-scented moon maiden).  I didn't know if she really saw the pink or not, either way, it was fine with me if she wanted to think she saw it.  Wanting to be respectful, but not quite knowing how to respond, I kinda looked at her, and as nonchalantly as I could, I said, 'I don't know.'  She kinda shrugged and said, 'Oh well, must be angels.  You do have lots of angels around you.'  I thought to myself, 'pink angels, huh?  Sure, I'll take 'em, I'll take all the help I can get!' I think I mostly forgot that happened, because I didn't think about it again for a while.


A few weeks later, I was standing in my husband's office and was admiring this stained glass piece that one of my sister's-in-law had custom made for us.  It's a beautiful piece of the angel my mother-in-law had painted, the same one we worked with a lot in putting the funeral together; a nice likeness.  I don't know how I never noticed before, but it's pink. 


My pink angel(s).


'May you be aware of His angels near you to bring strength and hope and peace.'
   ~  Handwritten by my mother-in-law on the back of the original angel painting  


(*Can I also just say how resilient and full of strength my husband is?  Within a 2 month period, we watched his mother get sick and die, the dog he's had since he was 13 get sick and die, and me get sick.  I don't know where I would be without him and his ever-caring, compassionate, healing self.  I am so lucky, I can't even stand it.)

Solidarity

I think that when some big things happen in life, like the death of a loved one, a chronic illness (like Lyme Disease), or an injury, or something else that makes your life change drastically, you, most times unwillingly, are entered into a club. A club of people separate from the normal life and daily 'worries' that most people live in.  Your biggest concern is no longer what to wear, what to eat for dinner, vacation or business decisions. Your biggest concern is how to get through one day.  Today.

You have entered a world of challenges and changes coming so fast and from everywhere that it's hard to keep up.  Nobody teaches you how to give up your job, your social life, your school, or other things that make your life your life.   It's easy to feel alone, desolate.  After all, everyone else is still concerned with the latest hairstyle or where they'll go next for vacation and they don't really understand what you're going through.  (Keep in mind, through no fault of their own - I mean, face it - you didn't consider that life could be so hard until 'it' happened to you.)

But the other side to the usual 'odd man out' feeling is that you have become a member of this thing called the 'hard knock life.'  There are plenty of people who are also suffering invisibly, just like you are.  You probably don't see them at work, or at the library, or in your normal everyday life.  But they're there.  You just have to find them.  (Thank GOD for the internet, right?)

Some of you may be familiar with the political state of Wisconsin right now - there's a recall election coming up, tomorrow actually, to decide if we want to keep our present Governor, Scott Walker, or elect someone else, Mayor of Milwaukee Tom Barrett to take over.  I only mention it because one of the bigger catchphrases of the side who wants to elect Tom Barrett  is the pro-union side, who often uses the uniting battle cry 'Solidarity!' to stick together with the rights of the union interests.

Solidarity means sticking together, a group of people with a common interest or common responsibilities.  And that's us.  Even though you probably won't meet others struggling with chronic illness or grief or injury in your every day life, you are not alone.  There are others with your shared interest (getting through today) and your shared responsibilities.  You just need to find them.  And if you read this, you just did.