It finally happened.  After a few years of not getting any sort of virus, I caught a simple head cold.  It knocked me completely out for three whole days.  I am still all stuffy and have the intermittent sinus headache and remain within 20 feet of a tissue at all times, but I am feeling okay.  I just didn't think I would get knocked out like I have.  All in all I handled it pretty well, with the help of Nyquil of course. 

New information means new directions!

The ILADS conference was held a couple of weeks ago, and lots of new research and information was shared, and returned to me through Dr. K.  I am going on a new antibiotic and will be cycling through them more quickly.  Using low doses of doxy for long periods of time is no longer thought to be effective and new treatments are being prescribed to us Limeys.  There is still the idea of having a port or pic line installed and going that route if this new thinking doesn't prove to be effective with me.  I will probably be ordering up another Lyme test in a month or so as well to see where we are, and what is going on with the co-infections as there is new information on how to handle them too.
The past month has sucked.  I haven't been feeling well at all but have managed to put on a good face and smile as if I were doing okay.  But truthfully, all I want to do is sleep, nap and cry.  My right knee has been swelling up and is painful, especially after a day of being on my feet at work.  Dr. K feels it is probably the Lyme, but will order an MRI if I am still having issues with it after starting on the new antibiotics. Also, I have been experiencing extreme bouts of anxiety that have left me near paralyzed and fearful of leaving the apartment, though i am usually able to talk myself through them thanks to my training in psychology.  It doesn't make it any easier or go away any faster though.
I have called in to work an outrageous number of times, probably more in the past three months than in my total work life ever.  I am defeated by this and really hoped that it wouldn't effect my job as much as it has since I am only working three days a week.  I have been able to outsmart the system a little bit and avoided any reprimands, but should I need to call out in the next couple of months I will.  In about 3 weeks we will be in our busiest season, meaning I am going to have to be very cautious, or think on a medical leave of absence.  There has to be a happy medium in there somewhere.
After last week's follow up, and the tremendous amount of support, information and help that Dr. K has offered me (for a fee of course, but we can't work for free), I think it is about time for me to offer my help in supporting him in some manner......details to come.

Ouch I say!

The good thing is my "feel good" periods are getting longer (by weeks), the bad thing is the "feel like death" periods still come back.  I used to feel awful pretty much all the time, with a few hours or maybe a whole morning or afternoon scattered every once in a great while where I felt nearly fine.  Now, having the "nearly normal" feeling for weeks on end I start to get used to it.  And just when I forget how horrible I am able to feel it hits me.  I find myself wanting to whimper in bed all day for the first few days.  Then I remember I felt even worse previously and that this will pass. 

This is progress so I have been told.  It doesn't make it any easier physically but it does remind me not to give up and that there is hope. But in the meantime..ouch!!!!!!!

6 months of progress

Another month gone by and another follow up appointment attended.  My virals are high, and we will be addressing that on my next visit, after Dr. K. returns from the dinner and conferences he has scheduled.  This months task is to address my nonfunctioning (again) thyroid.  This is nothing new to me as I have been dealing with a hypothyroid for 20 years now.  However, he is smart enough, (or just well informed) to realize that both T3 AND T4 need fixing in order for everything to come together nicely and make me feel and work better.  I am also down 2 more pounds which is surprising given the hypothyroidism.  But this bodes well for continuing weight loss once we balance out my thyroid.

I am still on doxy and diflucan as well as a gazillion supplements (Travacor, Vit D, Parsley, Chlorella, zinc, probiotics, just to name a few).  If you have seen Sex and the City 2, and recall the scene with Samantha, you have a good visual of the amount of pills I swallow twice a day - and yes, I do swallow them all at once.  

Best laid plans

Wow, has this month flown by, welcoming me back in to the fray of the "real world".  Flagyl and I are not friends.  The side effects were completely awful, my favorite being cystic acne.  There was the nausea, the metallic taste ever present on my palate and just plain ick.  But it is over, for now anyway.  I am back on doxy *whew*. 

I have been working at a part time job which has me on my feet from 6 to 9 hours per shift, of which they have been kind enough to give me 5 per week.  You do the math.  Only 2 more weeks of that and I should be back to 3 shifts per week, or I will transfer to seasonal status and find something else not quite as stressful.  Classes start in 2 weeks as well, which should be an interesting adventure given all of the memory issues I have been experiencing.

All in all, I am improving as is my quality of life.  I just do not have the time or energy left to put it to good use or appreciate it much because of my current schedule.  My sleep is great, normal even.  That right there is a huge help.  I have lost 8 lbs this past month and if I can continue to lose more that will be a tremendous help.  It does appear we are on the right track with treatments.  I have a few new supplements to add to my regimen which should ease the damage done by the flagyl. Maybe in the next month I can add a gentle exercise routine and clean up my diet (again).  There is hope.

Wait and See

Today I started the Flagyl after a wonderful 2 weeks free from any antibiotic.  I have also been working for the past 3 weeks, part time three days in a row.  The third day has been rough but bearable.  Come Monday I sleep most of the afternoon away.  Monday is my day of rest.  I do feel better able to go through my week than I did a few short months ago. 

This week will be a wait and see game.  Wait and see how I react to the new antibiotic, wait and see what if any side effects I experience and wait to see how I am able to cope or handle working 3 8 hour shifts on my feet in a row.  My fingers are crossed that I will continue to see improvements.  Reminding myself that I no longer require 2 naps a day every day is a huge improvement.  I just need to keep considering the small victories.....

Two Week Vacation

I now get a two week reprieve from antibiotics. In place of the IV antibiotic I will be receiving vitamins to boost my immune system in preparation for the new round of drugs which are to break up the cysts the spirochetes have formed. 
My expectations are that I will start to feel close to normal in another week or so, work up to feeling good and then when we start the Flagyl I will crash and feel like crap again.  But that is weeks away so in the meantime I have high hopes and will appreciate feeling good and share that.  Which is good because I have started a part time job, working with the public who are on vacation at the happiest place on earth.  While I will be doing mostly weekends, the hours are kind of long and I will be on my feet the whole time.  My goal is to be able to do full time by summer's end, provided my body will let me.  And I promise to be good to myself, to listen to my body rather than just push through, which is more my nature.
Here's hopin'!!

I know I have been lazy about posting on any sort of regular basis here.  I don't want to sound like I am whining or complaining all the time either so I have been struggling with the updates.  I think I am over that now.  So on with the show!

I had another follow-up with Dr. K last week.  I had a 2 week period where I felt "okay", which is a big improvement over feeling "like crap".  But it was short lived and left me frustrated.  Apparently this is a good thing and shows that we are on the right track with my treatment.  So on to the next step which is to take me off of the doxy and rocephin (which is given through an IV 2x per week) and put me on Flagyl to help break up the cysts.  We are also putting me on Diflucan (yay yeast - ugh) and have added a bunch of supplements to boost my immune system.  And they are the most foul things I have ever put on my tongue - ever.  Parsley sounds harmless until you have to ingest the concentrated oil (8 drops).  Fortunately for the others I can alternate internal and external.  I am still vitamin D deficient.  I have to stay out of the sun until I am done with the doxy/rocephin but in a few weeks I can get out there, maybe a beach day or 2 a week.

Overall, I feel less than mediocre and often need a full day each week to just lie in bed and nap, sometimes two.  I start a part time job tomorrow and hope that being somewhat productive will help the mental struggle of feeling useless.  I am looking forward to the next group of treatments and it has been rumored that I will have more weeks where I feel close to normal, and that they will increase in duration.  This idea keeps me focused and prevents me from giving up because honestly, feeling this run down all the time is not what I had planned on.

I think the treatment might be working.  Two days a week I have the antibiotic served up to me in an IV, the rest of the week it's orally.  The pain is lessening (or I am getting used to it), the memory issues and brain fog are slowly dissipating except for the afternoons after the IV treatment.  The IV dose was doubled on my last visit, which has left me with nausea, but I can deal with that.  I have been doing more with my days and sleeping less. 
What I can't decide is is this all a good thing or a bad thing.  Or just something that will pass shortly.  In a few short weeks I have another follow up.  Will they increase the dose again as it seems my body adapts pretty well after the initial 2 weeks or will it remain the same?  Either way I think I am remembering what it was like to be a functioning human and look forward to being one again in the near future.

Kick It Up A Notch

I had a follow up appointment two days ago.  Yesterday I began antibiotics intravenously.  In a way it was my own doing.  I told Dr. K that my body could handle more.  And it can, I can.  The side effects from the Levaquin were minimal at first and then tapered off.  I mean, I have felt worse for longer periods of time.  Time to bring out the bigger guns. 
Yesterday I received my first dose.  Let me state that I am well aware that staying out past 3 am was probably not my smartest move and did have an effect.  However, I still ended up with a fever and slept the day away for the most part.  I am on the baby dose for another week, going twice a week while continuing oral antibiotics, and then increasing the dose.  I am finishing up the Levaquin and moving on to Doxycycline.   On the plus side I should have great skin and no worries about syphilis!
I am frustrated by the no work out rule.  I finally found a Bikram studio with in a reasonable distance and now I am not able to take advantage of it.  The good news is that with the discovery of the food allergies, I have managed to drop over 5 lbs without any effort.  If you can call avoiding any food that has yeast or eggs or gluten in it effortless.  The only time I find myself cringing with desire is when I am dealing with PMS and all I can think about is a greasy pepperoni pizza (oh how I have missed you). 

Week One

Well, nearly a week and I am still standing.  Mostly.  The first few days were a little rough.  The levaquin left me extremely drowsy and a little bit nauseous, but I seem to be adjusting to that.  It's the random fiery burning sensations in the joints that freaks me out a little bit.  My energy is way down overall.  All in all not a horrible experience.  I just hope its working.  This coming week building a garden and getting back to Bikram Yoga are on my agenda.  I also have a few job interviews scheduled (fingers crossed).

Day The First

This morning I took my first dose of Levaquin. Now, it certainly doesn't help that this past week has been stress filled and I have been very physical (moving) without being able to give my self much rest. So it really doesn't surprise me that I woke up feeling like I had been run over by a truck, twice. But after taking my dose all I wanted to do was sleep - hard. However I had to wait for the cable guy to arrive so that wasn't going to happen. So I know it makes me drowsy and I know it makes me nauseous - a fact I discovered after I ate my lunch. Meh. My joints are burning but that could be due to a number of different things. Now I'm hungry and would do anything for a grilled cheese, tomato and bacon sandwich and a bowl of soup, but that is not allowed (yay allergies killing my list of comfort foods), cranky and sore!!!

No Cake For Me Thank you

So it’s been just over a week with supplements and change in diet. I definitely feel better. I am experiencing less pain overall, my movements are easier throughout the day and I am no longer excruciatingly stiff in the mornings and evenings. There is also a marked change in my ability to focus. I even made it through a game of chess this afternoon. I look forward to playing more often but I think I should crawl before I learn to walk. I’m pretty sure I should remove alcohol from my diet as well, or limit myself to a glass or 2 of wine every once in a while as I now am able to feel the effects it has on my functioning and pain the following day (and no I am not talking about simple hangover symptoms). Using it as a means to self medicate is one thing, but I’m hoping I won’t need to do that on a regular (nearly daily) basis.

Right now the Lyme and the resulting co-infections have taken a back seat to the food allergies. While I have no great misery about no longer ingesting gluten, egg, yeast and most dairy, it seems others do. Granted, those that I have recently spent time with know of the new changes I have had to make but honestly, it really isn’t that big of a deal for me to change what I eat. Granted, you won’t see me anywhere near a pizza parlor and I want nothing more than to attack the Domino's delivery driver as I see him drive by. It really is okay. I am looking forward to exploring the kitchen again. I just wish that Whole Foods was more conveniently located so I could stock up the pantry.

Now, a simple ”no, thank you” just doesn’t seem to be enough when someone tries to pass a piece of birthday cake. Maybe it never was, but now I notice it because no, I really can’t eat cake and I treat it like poison. So the conversation goes from “no thank you” to an eventual “no, I cannot eat that”, which then brings about the whole allergy thing. When really all I was trying to do was avoid the whole topic and concentrate on whatever is going on around me. I suppose I could simply take the offered food and set it aside and hope no one notices that I don’t eat it, but that seems like a waste of food and again, I am afraid of inviting a conversation that really is tiring and unnecessary.

In a few days I will start on the antibiotic. I am worried about how my body will handle it, the side effects. Hopefully the worst that I will experience is some mild nausea, but I won’t know until I start. I haven’t taken an antibiotic in years, decades maybe.

Ah Detox

So I've made it through 4 full days of life without gluten, eggs or yeast. On top of that I've been taking the supplements religiously. My routine is dictated by a yellow sheet of paper held on to the fridge by, of all things, a Domino's Pizza magnet. I really need to get one of those pill box things so I can just grab and go each day.

A few things I have noted. I am cranky, frustrated, angry, overwhelmed and seriously anxious. You would think this would be a bad thing, and while it might be for those stuck in close quarters with me, it's actually positive. See it means I am feeling again, and becoming aware. I am no longer stuck in a zombie state or swimming through fog to try to function with any sense of normalcy. I have become quite adept and pretending I am more okay than I really am. What it means is this is all starting to work. And I don't think I would feel nearly as bloated as I do if it weren't for the massive dose of Chinese food I have been eating the past couple of days. Discovering egg in the moo shu chicken was disappointing and resulted in it going to the trash.

My BFF stopped by this morning at an unholy hour on her way to work to drop off a book she had promised me ( http://www.dummies.com/store/product/Living-Gluten-Free-For-Dummies.productCd-0471773832.html ). I put a few more books on reserve at the library. Gluten free seems to be the easy part. It's adding life without egg and yeast to that where the challenges hide. Oh, and just 10 days left before I start on Levaquin. Yippee!

D Day

A big sigh of relief. Yesterday I spent an hour with Dr. K. going over all of my test results, translating them to English and creating a treatment plan. Yes, I have Chronic Lyme, yes I have co-infections (including cat scratch fever which makes me giggle), yes my immune system is shot from being in overdrive for the past 4 plus years, yes I have allergies, my hormones are all wonky, sure my thyroid is shot, yes I have deficiencies galore, and yes, I have hope.

In two weeks I will start oral antibiotics. In the meantime I am trying to get myself back in balance with supplements galore and diet changes so I will better tolerate the Levaquin. No more gluten, no more yeast, and *sniff* no more eggs. Sadly, no more oysters too, which is odd because I am zinc deficient and oysters are loaded with zinc. But now I know why I felt awful the day after having gone out and having 1/2 dozen oysters with dinner the other night.

I have spent the past few years trying to pretend that I was okay, trying to get through a day without collapsing in tears and frustration in front of others, and most of the time I succeeded. The memory issues, inability to focus, depression, pain, mood swings, lethargy, anxiety, sleep deprivation, it really wasn't all in my head. There is a reason, and with some work and patience I should be back to being a functional me again.

But honestly, eggs? Really? At least I still have sushi.

Fingers Crossed

Waiting, that sweet anticipation. I find myself staring at my phone, willing it to ring, wondering if I should pick it up to check for a dial tone. Yes, I realize how silly this is. It is a cell phone and I am not a teenager and I have voicemail.

My test results are in and the consult is scheduled for next Thursday - a whole week and a day away, gah! But there is hope that one of the Friday appointments will cancel and I will be in the office, notebook in hand so I can have something to reference once I leave the office as I know I will miss, forget or be unable to process some vital (to me) piece of information. I should know tomorrow morning if I am lucky enough to snag the early appointment.

I've never looked forward to a Dr.'s appointment before, so it is a bit strange to feel this way. Then again I've never been in this position before, where my symptoms aren't viewed as imaginary, impossible, perplexing, or perhaps temporary. There is peace in validation and sitting with the pain, knowing I'm not completely mad. I am excited for treatment to start, now matter how much work it involves (I should post that as an affirmation on my bathroom mirror for reference).

Rollercoaster Ride

I was at the lab (again) having yet more blood drawn and the view out the waiting room window was of a couple of rollercoasters. It felt as if the image was put there just for me; the loops, the giant pause before rushing downhill headfirst, the sensation of loosing your stomach and the loss of control. It fits my life quite well right now. There is also the recurring symbol of the mirror that has been following me recently. I think I am ready to pay heed to these. I think this time, I get it.

On champagne and the Art of (not) Celebrating

A recent Tuesday evening found me and Mr. Man at one of my new favorite haunts, a local wine bar that even offers a free ride home should you want to share that second bottle of wine, or enjoy an extra glass or two. The only fault I see with this new hang-out is that they do not offer flights. *Le sigh*. Though I do commend them on their choices of grappa available.

This wine bar has a good but not great selection of sparklings in any price range; and I am a huge fan of anything with bubbles. It has become my personal goal to try every sparkling they offer that I have yet to experience - within a reasonable price range. On this last visit we drank a fruity Prosecco. It is not one I would have again, but the colder it got the better it tasted to me. I generally do not like fruity or sweet wines so this wasn't a surprise. Mr. Man, on the other hand, was very happy with the selection.

What I find odd about the whole "champagne" thing is that so many assume one is drinking it because there is a celebration or a special occasion. Why is this? I drink sparklings on a pretty regular basis. I've even been caught with it around a campfire (works well with toasted marshmellows). Barefoot Vineyards offers a good, yet inexpensive brute cuvee that I recommend. So when our server asked what we were celebrating, the semi-snarky response I let out was "Tuesday".

Why do we have to reserve things we especially enjoy for special occasions, holidays or company? Don't even get me started about "the good dishes" or "those are for company". It lends one to think that they are just not good enough as they are, that there must be more. I, however, think that we would be better off with less and be more willing to celebrate and therefore appreciate the regular or mundane.
You know, like a Tuesday.

Rainy Afternoons and Closets

An organized Amy is a happy Amy, and today I was able to create happiness and a sense of accomplishment.

There is a hall closet right off the living room that has been laughing at me for months, since I got settled in here. Given the situation, I have been tip-toeing around careful not to upset the status quo too much at once. Too many changes all at once seem to make Mr. Man a touch cranky. Oh he is fine with change in theory, it's the application that seems to make him grumbly. So I have been putting things off and pretending that just because chaos and mess reign behind doors that are always closed, that I am not bothered. This is me trying to make nice and keep to calm waters while inside I am cringing.

Today I tackled said closet, with a vengeance. I showed no mercy. Though in the spirit of trying to live as simply and as cost effectively as I possibly can, I have a few bags of paper crafting supplies that have a new home; one where they will be appreciated and put to work.

The other big huge bonus is my knitting supplies have a home. They are no longer shoved willy-nilly in a duffle bag all jumbled together. The yarns have their own tub, as do needles and miscellaneous supplies. It is my hope that I will be able to find the right sized needles in a reasonable time frame and without dumping everything on the floor into a big jumbled pile.

There is one small dilemma that has come up as a result of my productivity. I have a scarf that was never finished because it became a big fat frustrating tangled mess. This would not be an issue except for the yarn is mohair, expensive and perfectly lovely. This pricey pink ball of angel-haired fluff is too delish to let go to waste. The ribbon is just as nice and just as tangled. I will need much patience and diligence but it can be done....I hope.