Realization of Life Long Issues

I really honestly thought I had this disease beat...However, reality hits and it hits hard.

I am a fighter, no doubt about that! For if I wasn't then I would have stopped searching for the correct diagnosis at the first doctor instead of going through 17; finally getting the right one!

It's difficult when you have a disease that 1) the CDC denies the disease is real 2) Society is oblivious to it and if they know if it many are skeptical or ignorant of it 3) You have insurance yet it is of NO USE to you! 4) Majority of doctors refuse to treat it and/or acknowledge it

I am sad today. My sadness is due to many different issues.

I realize now that I was fooling myself into thinking that I had beat Lyme...LOL sort of like the placebo effect I guess...you tell yourself you're feeling fine and ignore the small stuff...like walking issues on and off, vision issues that come and go, slight tremors that are here and there and well the fatigue and all over daily pain.

Yes I am doing better than what I was two years ago...In 2010 I needed a cane at times to walk. I don't use a cane as of today...that is a huge improvement! And our stairs...they were my own private Mt. Diablo every time I had to go up them! I would take a step, grab the rail and pull to the next step; by the time I reached the top step I was so fatigued it was ridiculous!

These are huge, enormous improvements and have made the quality of my life so much better.

Is it wrong to desire yet more improvements? Or should I be satisfied with where I am at?

Daily I live with the fear that if I am reexamined for my disability coverage they might think I am fine and take it from me...This is a huge fear for me...because my disease waxes and wanes or in understandable terms it comes and goes...it's crazy making if you ask me!!

I get my hopes up...thinking I am fine only to be struck down and quickly reminded I am not. I look good, yet inside the battle continues to rage onward.

Welcome to Lyme Disease...so many others have it way, way worse than me. So many are bedridden due to this debilitating disease.

I am fortunate on so many levels yet frustrated and feeling robbed just the same...this is the realization of life long issues...As it has been said over and over again...

Once you have Lyme sadly you will always have Lyme

Today I Salute Caregivers!!

My husband just had shoulder surgery yesterday...

I had forgotten what being a "caregiver" entailed...

Patience would be at the top of my list...It's funny how hubby and I through the last 14 years (since he fell two stories and was seriously injured and then my getting Lyme Disease) have been thrust in and out of being caregiver to each other.

I have always considered myself a very loving patient person...Yet I have seen within the last 24 hours how ones patience can wain when exhaustion sets in

This morning I am having to remind myself that it is just as important for me to do my best to catch rest when I can...

 I salute all of you out there who are Caregivers...My advice...be kind to yourself...cut yourself some slack when you feel irritable and exhausted and most important take time out for you!! If you can get family/friends to come and relieve you even for a short time it will be all worth it!

It's easy when we are caring for others to forget about US...Feel free to share your thoughts on care-giving and what you do for you throughout the day...I'd love to know!!

Here is a great link for caregivers to check out  http://www.nfcacares.org/about_nfca/

God Bless!

Remission

I was bit by a tick in 2004...I am one of the few who knows exactly when they were bit...The rash was on the front of my neck...in 2005...my nightmare began...Many of my blog followers know my story already...It would take 17 doctors and many incorrect diagnosis and five years before I was given the correct diagnosis of Lyme Disease...

I am now 53 years old. I feel I have faced death not once but twice so to say. I was told in 2006 I was dying with OPCA and then in 2008 with MSA...if I had those actual illnesses I should be dead by now.

About four months ago I reached a point where I was sick and tired of living my life around my rather large box filled with Rx meds and supplements of all sorts...I quit...cold turkey...said I'm done with this...

After two years of every six weeks seeing my doctor I had to take a hard look at where we were financially...the reality wasn't funny...at all..

It sucks to have Lyme Disease...on so many levels...It sucks because I have insurance yet it is of no use to me when it comes to getting medical attention for my Lyme Disease...Thanks to the CDC my disease is not recognized as a legitimate disease! I have often said I would have been better off having any other disease but Lyme...This disease has forced me stop working...It made it impossible to walk our dogs...to go up our stairs without viewing each agonizing step as if I was mountain climbing...It could have put me so to say in my own private little hell on many levels...had I let it...

but I didn't

I fought back right from the get-go!  When the doctors told me I was dying I learned all I could about the diseases they said I had...I went back and said so many different times to them "NO WAY!!! I DON'T MEET THE CRITERIA OF THIS DISEASE YOU SAY I HAVE" Yes I yelled...they turned a deaf ear and gave more meds...

It was a year ago September that I did a month of IV Rocephin...I was so sick the entire month...I practically slept it away. The day of my last IV my LLMD refused to give it to me because I was so ill. We went back to orals...

I now believe that month on IV was a pivotal point for me...I just didn't realize it...not until last month..

As of last month I feel my life has been given back to me....One of my LLMD's once told my hubby and I that the goal was to get me into remission...Hubby replied "If we get her into remission what does that give us 20-30 years before it come back?" the LLMD replied "No sadly 2-3 if we're lucky"

Well I feel I am in remission. How do I figure so??

I no longer dread having to go upstairs...I write this with a grin from ear to ear...It is no longer necessary for me to pull myself up with the help of the railing step by step...wanna race???

I am able to walk with our dogs...however a bruised heel is currently causing me to curtail how much walking I do...

The biggest is the pain throughout my body...it's gone...I currently am slowly weaning off of my Neurontin.

I have more energy than I have had in years...

What is the real tell tail sign is the people who know me...they see me and say I look great! They want to know what I am doing different...I tell them enjoying each day to the fullest...they say the "spunk" is back in my voice...I honestly didn't know it had gone away...

I really hadn't been aware of how much I had allowed Lyme to consume me...there was no way to avoid it...it disrupted every single part of life...no matter how hard I fought it was stronger and determined to win...

These days I smile more...I embrace each day more than I thought I was before...and I give thanks to God for bringing me through this journey...I know it's far from over...yet today I feel I have gained so much than before...

Thank you all for your prayers and encouragement along this path with me...I am so glad you were brought into my life for the past seven years I have made friendships with some of the most amazing courageous people I have ever met!

This journey is far from over and if you're still reading this blog is far from finished!

God bless us all and Hugs to you my friends!
b'nana

Come On You Have Nothing to Loose

OK so it has been a while since I last posted...the reason...I was embarrassed to admit to my readers that I was unable to remain on the protein drink program...

I lasted almost the full first two weeks until I ended up with an incontinence issue of which I won't bore you with the details other than I realized this sort of program was not for me.

After sitting and thinking long about my Lyme journey the last two years I decided that enough was enough. I no longer wanted to live my life around a box filled with supplements, antibiotics and natural so called antibiotic remedies...I was tired of the Lyme war I was fighting...

In the past two years since I began the Lyme treatment I have retreated back a few times. The last retreat was around November last year...

I also realized and accepted that for the past year I have been in a bit of a depression since my father passed last August. I dealt with his death through food. When thoughts of missing him, thoughts of hating being disabled due to Lyme would creep in I would eat. My favorite foods are carbs and sugar goodies. It would be easy to blame it on the fact that our grandchildren live with us and our daughter keeps on hand a good supply of "treats". Oh how often I have found myself sneaking a chocolate bar, a cookie or spoonful of ice cream when no one was around to catch me!

It wasn't until a month or so ago that I was shocked to see how high my weight had reached when I stepped on our bathroom scale! OUCH!! Reality hurts!!

Yet there was no one to blame, no disease to point the finger at for being the culprit in all this other than myself!

It wasn't until this last Saturday at our Lyme support group meeting that I realized just how key the following of a no carb no sugar diet is in getting healthy again.I realized that my acid reflux had returned recently since I had been eating a great quantity of carb and sugar loaded goodies.

I don't feel any better than I did a few months ago. But what if the diet is key to feeling better. What if it really can make a difference. Surely it couldn't hurt me to explore this and get my rear end back on program. I honestly don't want Lyme as the reason for my death some day...I would like old age to be the culprit instead!

So this morning hubby went to the store and bought an abundance of "Organic" Veggies. We both have vowed to help the other on this part of the journey. I started back on my supplements and taking 3 drops twice a day of A-Babs drops.

I encourage those of you out there with Lyme if you're not concerned with your diet to do some research about how important a low carb no sugar program is for your recovery! I was amazed to find a mountain of information out there that attest that joint issues can improve, reflux issues can improve and a big one weight issue improve!

You know when I was first diagnosed with Lyme disease in February of 2009 I went on a healthy Lyme eating program...I did start loosing weight and my symptoms did somewhat improve; however, I did fudge here and there.

For those of you who have followed my blog for quite some time you know this has not been an easy journey. Yet today I can't help but wonder if my fudging on and off of the eating program has hurt me from feeling better than what I do now.

OK so here it is gang...I am going to challenge those of you who are not watching your carb and sugar intake to now do so with me! Please...join me on this journey. I want to hear from you how your doing and what issues you face with this program...Together we can see and learn just how crucial the Lyme eating program is to our feeling better...

The biggest one is that the bugs living within us feed off of the carbs and sugars we ingest...do we really want to give these blasted bugs more ammunition in this battle? I know I don't!!!

Come on... you have nothing to loose except maybe some clothing sizes!! And maybe, just maybe together we will find we feel better!

6 Week Cure to the Middle Aged Middle

OK so on my latest visit of about two weeks ago to my LLMD I complained about my recent weight gain. My thyroid is under active and it seems that the thyroid meds are not helping the situation at all!

After two years on antibiotic therapy it is also time (according to my LLMD) to do a good liver detox...her suggestion...The Drs Eades book 6 Week Cure to the Middle Aged Middle 

I have to admit I was skeptic about this new eating plan...yet my LLMD assured me over and over that it was by far the "best" plan for me to go on. As I sat there I contemplated about drinking my meals. I found myself pleading to my LLMD "Well what if I go back to low carb no sugar again" boy did I see a firm side to my LLMD I never had. The reply was not what I wanted "No this is the plan you need to do. It's only for 6 weeks. When you come back and see me by then I guarantee you will be amazed at the weight loss you will have"

It was obvious I was not going to win this argument. So I went and bought the book. Thumbed through it and did my usual online research. I was surprised to read so many favorable reviews. The authors claim that your blood pressure if its high will come down (not one of my issues) and cholesterol too (that one sparked my interest!) and even folks with fatty livers will improve...I don't have a fatty liver but when I read it will detox the liver I thought well shoot why not! I have been downing lots of antibiotics for the past two years. My liver needs a break. My body needs a break!

So yesterday I started the 6 week program. I plan to take you along with my on this journey. Ready! Set! Here we Go!!

I started my day yesterday with a cappuccino whey smoothie...(the recipe is in the book) to my surprise it was actually not bad. In the afternoon I had a strawberry/berry smoothie...my only complaint on this one was it was a little to thick more than likely due to the way I prepared it...I think I added way too much ice. The recipe called for 1/2 cup frozen sugar free mixed berries and 1/2 a cup of ice...you are supposed to get 3 protein drinks a day and a prescribed meal out of the book once a day...I chose to have dinner...I never got the third shake in as I was stuffed. I went to bed stuffed.

This morning I had a white chocolate caramel flavored shake...it was the best so far!! I enjoyed it so much I had it for the afternoon one too!

I have to laugh at myself I am so anxious about the "big" expected weight loss that I jumped on the scale this morning...only to be disappointed that it hadn't gone down from yesterdays reading! Darn!! OK so maybe I am just a tad bit overzealous about this program!

But hey you keep watching this blog and I will take you along with me on this new journey...Oh and Grilled steak is on the dinner menu tonight...gosh my mouth is watering just thinking about it...LOL... but I am honestly not hungry at all and I am really beginning to see I eat out of boredom...Wow this is really making me aware of the bad habits I have...LOL and I thought I was doing so good the last two years!

Sweet Lord I'm Scared

In the middle of the night in 2009 I found myself scared of the road I was on...I came downstairs and went onto the computer turned it off. I pulled out a piece of paper and this conversation began....I reflect on it in times when I am at a low point on this journey...funny tonight it came to mind and I felt I ought to share it with all of you....Enjoy btrflynana

Sweet Lord I’m Scared of What’s Yet to Be

I sit here weeping my heart torn in two

My lord my God what is this daughter of yours to do?

Frightened I am of what I can’t see

Frightened of what the future will be

And then I hear the words deep inside

Take hold my hand child sit and confide

I am your friend the one that is unseen

I am the one the almighty he

It is your tears that tug at my heart

Wising you’d remember we’re not far apart

You hear my whispers ever so low

My words embedded to soften this blow

Hold tight my child as your up through the night

Hold tight to my hand as I am your guiding light

My lord my master, please take this away

It’s all I have my sweet lord to say

My child if I could

Then surely I would

But alas sweet one this is your task

My bright little star the one that will last

A life created with a purpose in mind

To show the world your heart’s all mine

Sweet lord I’m scared of what’s yet to be

Oh dear child of mine please leave the worrying to me

You’re not alone in front for all to see

The strength that comes from no one other than me

A flower of sorts to blossom and grow

A flower you see for all to know

Your strength as I said will come from me

I am the one the almighty he

I love you my child you’re never alone

I am the one you have always known

I will give you the strength that you need

I am the one who has created your special seed

Here's to Herxing

So the last few days I have been deathly ill....yes I say deathly...at least that's how I felt

Every morning as I awoke to greet the day I was well aware of each body part as all joints and muscles ached...my bones even hurt.

I felt nauseated, light headed and well as if someone sucked all the life out of me. Exhausted.

It was soo bad that even one day I didn't bother to do my hair or make-up...everyone in my family knows for me not to do hair and make-up I am pretty sick. LOL its a woman thing...even when I don't feel good (which is majority of the time) I still get dressed and do hair and make-up...God forbid I look ill!!

I found myself in this deep dark depression. It was awful. I felt that Lyme disease is going to eventually win this battle. That eventually I am going to succumb to this blasted disease! Not a good place for one to be.

Seven years of battling this disease and I am worn out. I know there are countless others out there that have battled this disease way longer than I have...that makes me even sadder.

I take handfuls of antibiotics and pain meds everyday...I have now for two years. While my CD57 has gone from 19 to 63 since 2008 (200 and above is what we are striving for) and my C4a has gone from 14735 to 8763 (normal range 0-2830) so there is an improvement there (two years on antibiotics to me these improvements feel like baby steps!); however, my EBV has gone up higher along with my C. pneumoniae and HHV-6
 
I remain sick. I feel sick. I am sick. Being chronically ill can and is a challenge at times. It wears not only on the one who is sick but also those around us. Tempers can grow short and emotions can run high.


Feeling so ill this last week I was unable to see any light on this path my life has been thrust onto. I felt at times as if I was going to loose this battle and very soon. That's how sick I felt. I found myself thinking of my own mortality. I love Jesus, I adore him; yet the thought of the finality to this life scares me something beyond words. I find myself wondering if I am a bad daughter because I am so scared of dying...the unknown. My father died last August. I find myself often wondering what his new life is like. The unknown. Obviously I have way to much time on my hands lately.

Well to my surprise yesterday I awoke feeling so much better. Still had pain and fatigue but nothing close to where it has been. This morning my legs are a bit worse than yesterday but hey I am doing pretty good if I can sit and blog.

What occurred to me yesterday was that all the exasperated issues had to have been what is known in the Lyme disease community as a Herx.  I have had herxes before but not like this in a longtime. I can't help but wonder if the Oregano Oil (I use Oreganol) I started to take has added to this?

Herxing is a good sign to a Lyme patient. It means your killing the bacteria inside of you and the downside is that bacteria turns into toxin and your body has to work extra hard to clear it out.

If I could have a glass of wine (can't due to meds) I would raise my glass and loudly claim "here's to Herxing" yeah its a good thing yet it knocks you off your feet and has the potential to send some to the ER.

Positive side to this, the light on my road is something is working if I am herxing...Right???