Depersonalization... What in the world?

So, this is my attempt at updating, in some way, this blog that I have had so much trouble updating in the recent months. Forgive me, and read on, for what could be a real eye opener for many people.

I posted this in a Lyme support group that I am a leader on. I hope this helps some people to understand yet another facet of Lyme disease.

The Google dictionary defines depersonalization as: "the action of divesting someone or something of human characteristics or individuality."

WHAT?

Yeah, my thoughts too.

So here is a better definition... Coming fromhttp://www.medicalnewstoday.com/articles/262888.php we get this:

"Depersonalization is a dreamlike feeling of being disengaged from your surroundings - where things seem 'less real' than they should.

People who suffer from severe depersonalization say that it feels as if the they are watching themselves act from a distance without having a sense of complete control.

Even though depersonalization is harmless, it can be extremely disturbing for the person experiencing it."

My thoughts exactly. My life has been taken by depersonalization often, some times for long periods of time (I'm talking months) and other times, just an hour or two a day.

Usually, it's an occurrence that goes on for a few days to a few weeks at a time for me. It has been very hard to realize, and typically it is something that we don't realize until we are far into it, or have come out of it.

I am a mom of three little congenital Lymies. And until Lyme went full-blown in my body, I was always very active with them, and with life in general.

I was an in-charge person, happy, loving life, and ready to take on the next day.

Then Lyme took charge and left me, a pile of my former self, on the couch/dining room chair, ignoring the world around me, watching, through uninterested eyes, what my husband was doing (cooking the dinners that I used to cook, playing with the kids that I used to play with, etc.) and not really feeling anything at all.

I would say this is something highly linked to a form of depression. I'm not a depression expert, but I would say there's got to be more than one type! I bet, if there's not yet, one day there will be a "depression spectrum," like Autism.

I digress.

I know that since Lyme has been center stage, I've numbed. I've grown to hate talking. I've grown to loathe phone calls. In fact, I typically don't answer my phone. Even when I know it is someone I love dearly.

I simply can't bring myself to speak to anyone. Just text me. Just email me. Phone or face to face is like climbing Everest most days for me. And I mean climbing Everest WITH LYME.

Not gonna happen. 

I have the Lyme that would have probably gone in the direction of an MS diagnosis. My legs and arms are the most affected (ok, my heart is too). My muscles are fatigued 98% of the day, my knees buckle 5-50 times a day, no joke. Etc.

So that climbing Everest comment? Yeah. That's how I feel about talking on the phone.

Just like watching a movie, unless you're a fanatic... LOL  you don't talk to the actors on-screen. You watch and let it unfold.

Watching my kids play, talk, do homework, watch Netflix, etc., and not interacting with them cuts open my chest and rips my heart out, figuratively speaking of course.

I feel like a negligent parent. When my two older girls were in school and my youngest had one year left before she started, she watched TV a majority of every weekday of the entire school year. She knew how to run the remote.

All I had to ask her was what she wanted for lunch when the time came. And I used to homeschool my oldest! For 3 years I did this. I am an actively involved parent! Until Lyme's depersonalization.

Sadly, that can be my life. And I'm willing to bet it can be many of yours' too.

What would you say to your depersonalization? What would you say to those around you? Maybe getting those thoughts down here, then copying and pasting it into a letter to your loved ones wouldn't hurt.

I was finally able to break down in a lake of tears, yammering on and on about how I have become the above case study to my husband. It actually was very healing.

It doesn't mean I have ceased depersonalization, but at least now he knows WHY and where it comes from.

So that's what I've got for you tonight. I hope it is helpful. 

Peace, love, and cider mugs to you all in this beautiful fall 2013!

World Lyme Protest Day/Weekend and My Body Doth Protest

So yesterday and today (May 10 & 11, 2013) there have been events going on worldwide to spread the word about Lyme and other TBI (tick-borne illnesses).

I had an appointment with my attorney for my upcoming disability hearing at 11. I laid in bed, unable to get enough energy to rouse myself, until about 9:30. Dressed and fed, we all piled into the car for the drive. As soon as we got home, it was back to bed. Netflix offers me some great nostalgia when I'm in this predicament. Let's just say today's respite has a lot to do with this guy...

The pain and fatigue is pretty bad today. I'm not even wearing a Lyme awareness bracelet. How I wish I could have been somewhere today, spreading the word. Heck, I wish I could've been enjoying the company of my kiddos. So... In honor of this weekend's events, here is a nice pictorial upload to help spread Lyme awareness!

Here's praying tomorrow is better. Sometimes it's just not that easy being green...

Remember folks... Lyme testing is unreliable. Is this the mystery in the center of your issues?

 

Be aware that Lyme is the fastest growing chronic illness in the world. Wisconsin is in the top 5 endemic states in the country for Lyme disease. 

Lyme is like that ugly sweater your Great Aunt hand-made for you... It makes you miserable and you just can't get rid of it fast enough...

 It doesn't care how old you are...

In fact, it likes to invade whole families, congenitally.

It will take you places you never thought you'd go...

And leave you with something that becomes a part of you for months... (mine, going on 7 months now)

 Lyme will make you subject your children to regular traumatic blood draws for monitoring their basic functions while on lengthy treatments.

Every day that you go untreated is like a ticking time bomb, ready to go off at the precise moment: the perfect storm.

When it does... you can't do anything but give in.

Doctors simply aren't taught the wretched realities of Chronic Lyme disease...

There's just nothing simple about this illness.

So please, if you feel there may be something to this illness and your mysterious condition, check out the rest of my blog here, watch Under Our Skin (you can watch it online for free on Youtube, or Netflix, Hulu, and other places), and get help finding a Lyme Literate MD (LLMD) to check you out. Remember that a Lyme diagnosis is CLINICAL and NOT reliant on blood testing as the tests for Lyme are completely insufficient. They produce false negatives around 60% of the time.

Remember, regular doctors (no offense, really!) do not have the training and know-how. Not even Infectious Disease docs. I've been to more than I can list right now. None of them found my Lyme. Now, after treating for over a year, even the CDC agrees that I have it. So it wasn't because it wasn't there, it was because they simply didn't know how to diagnose it. No matter how much you trust your doctor, it would be like asking an electrician to install your new toilet. They just aren't equipped and will probably diagnose you with something else.

 If you need more information, talk to a Lymie. Trust in what they have to say. Visit www.WisconsinLyme.net or MDJunction's Lyme Support Group. Find a local support group in your area. Just do something.

Keep the faith guys and please educate yourself! The IDSA and CDC won't do it, so we have to.

Peace, love, & cider mugs...

Sitting Here Resting My Bones...

You know, no matter how strong my conviction is to update more regularly, something always tends to get in my way. Call it procrastination... Call it Lyme brain... Call it what you will... I'm trying my best, and I pray you'll forgive me for the lag-time.

I've had a few big gaps lately. I had signed up to go on a 5-day field trip to St. Louis with my oldest mini-warrior early in the school year with hopes that I would be much further along in my treatment. Well, the time came and I wasn't nearly where I would have hoped to be, physically speaking, but I had already committed.

Gator at the Arch!

Suffice it to say, I was a bit overwhelmed with everything. But it was so worth it. I had a fantastic time with my girl, and the two choirs she is in walked away from a national competition with a silver and a gold.

Here are a few more highlights in pictorial form for ya:

We saw Million Dollar Quartet at the Fabulous Fox Theater! It was amazing, and the kids (about 70 of them!) all learned a bit of terrific music history.

We went to Six Flags. Yeah. It rained that day. My brand new shoes on top, Ab's brand new shoes 100% soaked with her poor feet wet too!

While we were doing our sitting and finding shelter from the rain, we got caricaturized!

We hit the Old Spaghetti Factory too. No one mess with Gator and her pasta!

I had to take some serious breaks and was so glad to see all of the "free" time scheduled in to the itinerary. When the kids hit the pool (and the other chaperones sat and watched) I hit my room to rest. The day we went to Six Flags I was the one who sat as much as possible. Long story short, I did what I had to so I could do my duties as chaperone and not completely bottom out.

That was a week-and-a-half ago or so.
A few days ago... Well...

I chaperoned my middle mini-warrior's 2nd grade class trip to the Milwaukee Public Museum. Oy. Did I not realize that meant WALKING? Holy cow. Let's just say I have crashed early for the past two nights, with ongoing leg pain (pretty severe), feet pain (also severe), headache, etc., and am kicking myself for creating a busy life these last few weeks.

And... a few pics from that escapade...

"Not sure what to think, but I will eek a strange smile for ya Mom!" In the Butterfly exhibit. Good times.

Mom got some one-on-one time with some, too.

Getting more used to it...

Oh! And let's not forget the glacier! Doesn't she look like a natural explorer? Go Mater!

HOWEVER... I also don't regret it. I mean, I can't stand the thought of being that absent mom. It's not in my DNA, and I'm not about to start neglecting my kiddos now. Especially not when they are going through a tough time too. So we get out there, we fight, we fall down, we get back up, and we do it all over again.

Until next time... More on the essential oils... Promise.

Chins up and keep the faith.

The Essential Things of Life

So last time we bore our gory sickie souls to you all... And while you got the prettied up version, I'm sure it was enough for you to walk away with at least an inkling of sympathy for anyone with chronic illness and the flu!

Today's topic is rather tame, and even––dare I say––exhilarating, for those on a quest for wellness or even wholeness.

A few years ago, a friend of mine from church shared with me a tiny smidgeon about therapeutic grade essential oils and their benefit in our lives. I bought a few of them and began using them, very infrequently, around the house and a few times on our bodies to ward off sickness. I quickly forgot about using them so much and they sat, unused, on my shelf. (Thankfully they don't go rancid, like cooking oils do!)

The problem was, however, that I just didn't know the science behind these things, and with my personality, that was a problem... I needed more info and didn't know to ask at the time. And that is ok. Because there is definitely a reason for everything, even if we don't understand it at any given time.

Well, as you read last time, when we were hit with the plague (okay, the flu, but it felt like the plague!!!) I called my friend up for a diffuser. I still had a blend from Young Living, called Thieves, that would be perfect for this sort of thing.

Thieves is an interesting name, no? It bears this name because of where it was discovered. Back in England during the time of the plague, there was a band of grave robbers who would go into the homes and such of people who were sick and dying/dead from the plague. They would douse themselves with a blend of oils and enter the homes... And not get sick. Truth. When these bandits were captured, they revealed their oil blend to the authorities in exchange for a lesser sentence. Nice, huh? Well, this is the blend that is inside every bottle of Thieves. It is very anti-everything bad for you. Anti-bacterial, -microbial, -fungal, -viral. Everything! It also helps to bolster the immune system and more. It has a list of positive attributes that would rival even the fairest in the land.

We immediately started diffusing the Thieves as well as applying one drop on the bottoms of our feet nightly. When the oils are diffused, tiny microscopic particles of the oils are lifted into the air. The ones that are airborne actually kill pathogens in the air. The ones we inhale go directly into our bloodstream via the lungs. Most essential oils are molecularly small enough to cross the blood-brain-barrier; something most pharmaceuticals cannot do.

Our recovery from the flu was quicker than we had anticipated. What's more, I have heard from so many families in our area and in my home state how they have all relapsed. We have not. Immune-boosting power.

The reason they are called essential oils is simple: it is everything essential to the life of the plant. Nature is full of pathogens that are not only out to get us humans, but also any living thing. Plants are susceptible to illness just as we are. Think of their essential oils as their immune system. And they are powerful. Here's a great example of the power-packed punch of an essential oil: one solitary drop of peppermint oil is equivalent to 24 cups of peppermint tea! That is no joke. Just 3 drops in a two-gallon container was enough for a refreshing water beverage.

I have one more thing to say on today's post about essential oils. These oils MUST be therapeutic grade or you honestly do not know what you are getting. Some oils are chemically distilled/extracted, and residues of these chemicals can be left in the end product. Others could be blended with a carrier oil and still be called "pure essential oil" or what have you. There are even more specifics, such as harvesting time and procedure, organic issues, and more. So I urge you, if you want to give this a try, please don't go to the local shop and pick up a $6 bottle of "essential oil." There are perfume and food grades that are largely lab-derived, and do not possess the healing qualities that therapeutic grade oils have.

More to come on how these oils are fitting into my life with Lyme. Until then, keep your chin up and steady on friends.

Proto-Calling All Seekers!

So about 2 1/2 weeks after I blogged in February, my entire family came down with the FLU. Ugh. It was awful. Here's what happened:

Saturday, Feb 16th, we all went to bed, myself a bit eager for Sunday for two reasons. #1, Ab was headed to a regional spelling competition with the Knights of Columbus and I was going to be taking her. #2, it was my birthday. What a great way to spend a special day... enjoying one of my kiddos' academic excellence, even in the face of this disease.

Well, about 30 minutes before the stroke of midnight, my hubby and I were startled awake by Ab blasting through our door, exclaiming "Reb's barfing!" Well, she sleeps on the top bunk, so that was not going to be a fun way to spend the next half hour or so... Nick took to cleaning the bed while I cleaned the child.

We went back to bed, but I basically got to "enjoy" the wee early hours of my birthday by running every 20 minutes to the "sickie bed" when Reb would get sick again and again.

Plans didn't change, however, for Ab and myself. We went to the competition where she took 3rd place and a bronze medal. I am so so proud of that girl!

What we didn't know was that we probably ended up infecting quite a few people while there. Not the best gift, but when you don't know you're giving it away, what can you do? Kind of like congenital Lyme and my family. The unknown gift that keeps on giving. Until now, that is.

Anyway, Ab got sick Sunday evening. Reb was still sick. Then Monday came. Nick got home from work to find me, a lump of nothingness on the couch... Stomach pain. Him too. We sat there, feeling green. All of a sudden, Nick got up and went to speak to the porcelain god. The second time I've ever heard him be sick in the 15 years that I've known him. Seriously.

I sat on the couch, thinking how I was not feeling well and the bathroom on this level was occupied for the moment, and realized that I should begin my trek up the stairs as it takes me so long to climb Mount Staircase with my legs so afflicted by Lyme.

It was a grand decision. I got to the upstairs bathroom just in time. Ugh. Now the only one not sick was our middle daughter, Mir.

Nick and I lay in our bed, trying not to move for the pain, unless it was to the bathroom for another "yelling" match between ourselves and the echoing toilet bowl. How awful this flu was!!

Tuesday rolled around to find our last healthy kid incapacitated as well. At least she's the easy one. When she's sick, you wouldn't even know unless you walked in on the act. At age 7 (and earlier!) she does her business and cleans up, then it's back to bed and no one knows anything even happened. It definitely was the best order!

So... during all of that turmoil and suffering, we had some great friends bring by the root beer popsicles that were suggested by my home care nurse as well as some caffeine-free coke to drink room temp and flat. Yuck. But again, it did the trick.

The best decision we made was to have another dear friend bring over her last diffuser she had in stock so that I could diffuse some Thieves essential oil blend from Young Living. I began looking more into the essential oils and realized how amazing they are. They are like the life force of plants and work within our own bodies to help facilitate healing and wellness!

I will leave that little tidbit for you to chew on until next time. But this is the starting point of probably the best decision I could have made in a long time... Maybe since I decided to marry my husband and then have his children. Really. It's that good of a decision.

Until next time... Keep your chins up and steady on.

Surely to Put a Spring in Your Step!

Well, hello there... How have you all been since February? Hopefully you didn't think I was gone away. I know it's been a while.

Well I have some very good info to pass along! How about that?!?! After 1 1/2 years of treatment, I think we have finally stumbled onto greatness as far as a strategy is concerned. Now, since it's been a while, I will start back at where I left you all.

I've been doing the Glutathione pushes weekly. This continues to be a great help.

After 16 weeks of IV Rocephin, I have switched to IV Invanz. This is a new antibiotic and with that, of course, comes a pretty hefty price tag. I pray my insurance doesn't pull any fast ones on us. The two best things about Invanz is that #1 because it is so new, there is very little resistance to it, and #2, I only have to infuse once a day!!! Hooray!!!

Not much had been happening since I blogged last, so don't feel like you've missed out. Lyme is such a long-term treatment. We are marathon warriors, people. Endurance, endurance, endurance.

There is one thing I can't help but bubble over with pride to you all, though. My eldest of Lyme warrior offspring, Ab, just recently participated in her very first musical. This is something near and dear to my heart, as I have quite a history in the theatrical world. I was so proud to coach her vocally (it's something I do), and hear that she walked away from auditions with the LEAD!!!

Here she is, post-closing night performance, with her flowers and excitement. What a great kid.

That's right, FOUR bouquets of gorgeous flowers!

Even with the struggles of Lyme, she puts herself out there and lives with excellence. Of course, she comes home every night and has mom rub her aching muscles down with some essential oils... but more about that in the next post. ;)

I am so honored to have you all out there, reading along and joining me – in your own ways – in this fight. Please stick with us. We have a ways to go. I hope our story brings inspiration and maybe even a few answers or starting places for your own paths.

Big smiles and happy Spring, everybody!

Say Goodbye to Toxic Things / Gloot-a-what-own?

So it's been quite a few weeks since I've updated again. Here's the lowdown...

First of all, I am thrilled to report that one of us Lam girls is going to be [possibly] [hopefully] [rejoicingly] finishing with treatment in the next 2-3 months! My littlest Lymie will be set free of treatments after this next few months. We are SUPER hopeful for this to happen and are more than excited for her to start living like a "normal" kid again real soon. She is the youngest, so she's been the easiest one to treat. The other two little Lymies will continue treatment along with yours truly, dear old mom. The girls, however, do have a lot less time to treat compared to myself.

So... onto a PICC update! I have successfully had my PICC line in place for 14 weeks today. It has become a part of me in many ways, and life is "normal" with it. Yes, my husband still has to wash me and my hair in the shower... He's a good man. Yes, I still have twice daily infusions... It's boring. But I seem to have found a good relationship with PICCy. My nurse can not believe it's been in so successfully for 14 weeks without problem, except for the stupid adhesive burns I get. Yeah, those are frustrating. Even today, my skin tore when she took the tegaderm off, and boy does the betadine sting when she has to clean the area! WHOOO!!

Even though the meds have been going well and the PICC itself has been good, I have been struggling with my symptoms. And here's why: my LLND ran some new and quite specific tests that were developed by Dr. Ritchie Shoemaker, and we discovered that I have a very high chemical toxicity. It's so bad that it is worse than the Lyme right now. Basically, what this means is that my body isn't detoxing the way it should... Even with the efforts I make. The fresh lemon juice in my water all day long, the Epsom Salt baths, the Milk Thistle, juicing fresh veggies including greens and beets, etc.

So now I am also infusing a compounded substance called Glutathione (pronounced gloot-a-thigh-own), which is basically our bodies' number one antioxidant that it makes. This should be helping to clear my "methylation pathways," or the detoxing pathways, in my body, so that those nasty toxins have a way to escape.

So, that's the latest. Glutathione. If you want to hear someone who sounds awesome say it, check this video out, of an amazing Lyme (and much more) doctor, who happens to be German. This is Dr. Dietrich Klinghardt, who is absolutely amazing. Did I say he was amazing? Yeah. If you want about a 45-minute teaching on the 5 pathways to health, basically, watch all 5 parts of his "Fundamental Teachings" on YouTube. Anyway, he says "glutathione" within the first minute, so it's a quick listen. :)

So there you have it. Pretty great. Love that doctor. He's truly a great in this world. AAAAANYWAY...

So I am pushing glutathione on Saturdays. I have had to miss a few because it's expensive. It's $40 per treatment. Which just adds to the pile of money we have flying out every week... But this one is a pre-pay only, so if we don't have the money, we don't get the treatment. Will be back on track next week with it. Can't wait for that. It does help a whole lot.

Hope you all are doing well out there! Thanks for joining us on our journey. Peace, love, and cider mugs, y'all! Stay warm!!!