METAMORPHIS of BTRFLYNANA / LIFE WITH LYME DISEASE

Learned Through Experience

2012-09-01T20:09:00.001-07:00

Wow it's been a while since I posted! Guess life has been busy!! Yes it has and that's a positive note!

I have pretty much weaned myself from majority of my meds...pretty soon my thyroid meds will be all I will be taking. To me this is a positive improvement.

When I look back over the years I had ingested so many numerous Rx meds...many of them for years the wrong meds due to incorrect diagnosis (Parkinson's and MSA).

I am not advocating people stop their meds as all! For me I had to see where exactly my body really was at...Turns out much better off all that STUFF!

The next issue to attack will be my weight. I looked up today on the last two meds left the Neurontin and Amitriptyline both were prescribed to help control the neuropathy cause weight gain. Plus I love to eat!! So far at the lower doses I am doing pretty great! One issue I notice is I have a lot of eye twitching and other various muscle twitching throughout my body; therefore I am going to maintain where I am for another month before stopping them all together.

It feels liberating. I believe I am in remission! I am praying this lasts the remainder of my lifetime! Between you and me I hope to live to be very, very old!!

I can say that having been on this Lyme journey it has given me a new outlook. I look at doctors differently than the way I once did...No they are not like God's. Yes, they are doing a job just like any one else out there working. My doctors are hired by me for me; therefore I have the right to FIRE them if need be...and I have done just that with many!

Lyme is a terribly expensive disease to have. It sucks to have medical insurance yet it is of no use to you if you have Lyme Disease...This was a hard one to accept...how is a very sick person supposed to get well if they can't afford the blasted fix???

I appreciate every step I take since at one point I had to rely on the help of an ankle brace, a cane and/or walker...they now are in the garage! Gosh I remember when my hubby and daughter went with me to be evaluated by a physical therapist who said I needed to start using a walker...I cried like a baby...Shoot I was only 50!!

I appreciate being able to hold a conversation without stammering over the words! I still struggle with comprehending what I read. And some short term memory issues. Oh and walking up the stairs...if I lead with the right leg the left leg seems to just not want to follow along! If I lead with the left the right knows what to do!! Weird!!

I thank God each day for each day! Not that I wasn't grateful before because I was but each day is filled with even more gratitude!

If you're reading this and you have Lyme...don't stop hoping, praying and doing what you have to do to get well...I spent 2 long years on many different drugs for Lyme...I pray I don't have to do that again. I am sorry so many are out there suffering with this horrible disease. I am sad so many people have LITTLE or NO support from loved ones and friends. I learned early many people don't understand chronic illness. They don't know how to handle it. Some sadly don't believe it. Many are uncomfortable around sick people!

We the Lyme community stick together. We know how debilitating this blasted disease is. I pray someday we will see the CDC change their standards of treatment for Lyme patients and that they will finally acknowledge there is such a disease as CHRONIC LYME...Duh what a bunch of idiots the CDC is made up of!! I often fantasize about all the CDC members in a room filled with ticks...locked in the room...wonder if they would then say "THERE'S NO SUCH THING AS CHRONIC LYME"

Well gang there you have it...the update on btrflynana and what I am up to!!!

Have a blessed weekend everyone!

Realization of Life Long Issues

2012-02-25T15:25:00.000-08:00

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!!

2012-01-05T07:54:00.000-08:00

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

2011-11-13T20:47:00.001-08:00

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

2011-08-15T15:46:00.000-07:00

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

2011-06-21T15:13:00.000-07:00

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

2011-06-06T22:28:00.000-07:00

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

2011-06-04T10:41:00.000-07:00

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???

Today is the Last Day in May

2011-05-31T15:49:00.000-07:00

May is known across the country as Lyme Awareness Month

Today is the last day in May. I will remove my two Lyme colored ribbons that have been out front all month long. If we didn't have a home association I would leave them up longer; however, I can't afford the fine that will come with it. They have served their short purpose as many have stopped and questioned my husband and I what the ribbons represented. We were both all to eager to share with them.

I would say that I feel I did accomplish quite a lot this month. I managed to get an article in our local paper about Lyme disease. Sue (fellow Lymie) and I along with my hubby set up the first two Saturdays this month a Lyme booth at our local Farmers Market. We gave out a tremendous amount of information and talked to a lot of people! It really was worth having to get up at 4:30 in the morning to be there by 6:30 and then to finish up by noon. I have to laugh though, both Saturdays I came home and had no problem taking a nap!!

I was really surprised to hear from several different folks about how recently they had visited the local Black Diamond Mines only to get home and find over 30 ticks on their dogs and one little boy had 3 on him! We were able to educate quite a few folks. It was exhausting for us yet so worth it! California is expecting this year to see its highest tick infestation due to the large amounts of rain we have received this year. This report made it to the front page of the Contra Costa Times!

Last weekend a Lyme Disease Rally took place at Capitol Hill...http://www.youtube.com/watch?v=-wnpeTKa7wc&feature=related many folks attended the May Day Rally to bring awareness as to just how wrong the CDC and IDSA standards for Lyme disease treatment are.

Since this is the last day of May does it mean we are finished advocating for change? No way. Lyme patients advocate 365 days a year. We rarely miss a given opportunity to let someone out there know how devastating this disease really is. We strive to save others from suffering like we do.

As I have talked with quite a few folks the one thing that seems to really flabbergast folks is that those Lyme sufferers who have medical insurance it pretty much is of no use to them. Many are shocked to hear that a visit to a Lyme doctor can cost usually anywhere from $200.00 on up not to include medication and supplement costs. Now who can afford this? None of us can! So we cut short other areas of our life because we desperately need treatment and medications.

So as the month of May comes to an end. I make this plea to those who follow my blog...please help me in my quest in fighting against this disease. Please take time to learn what you can about Lyme Disease and educate those around you about it. Help us by writing letters to your congressmen/women letting them know how wrong the IDSA and CDC standards for Lyme Treatment are...

Lyme Disease has now surpassed Aids as one of the fastest growing epidemics in our Nation!! You or a loved one could be next.. I wouldn't be surprised if there wasn't someone on your street, in your community who is in the fight for their life against this disease!

If you feel so inclined please consider making a donation to support Lyme Disease Awareness. Here are a few sites I recommend:

California Lyme Disease Association (CALDA)

International Lyme and Associated Diseases Society (ILADS)

Turn The Corner Foundation

May is Lyme Disease Awareness Month

2011-05-05T16:12:00.000-07:00

I have been very busy getting ready for the arrival of this month!

Yes May is Lyme Awareness Month...I have been busy contacting CALDA, LDSA, IGeneX and our local Vector Control to request information to pass out at the East Contra Costa County Lyme Disease Awareness booth at our local Farmers Market this month. I am so excited that all of them were eager to help us out with donations!

Just a few days ago I put two rather large Lyme colored bows on the front of home...I had a neighbor ask what are the bows for? Once I explained why they were there he laughed and said "Oh I thought it had to do with the recent death of Bin Laden"....

Yes I am on a mission...to educate and inform my tiny part of the world about this rotten disease. In hopes that maybe through advocating awareness I can spare someone else the grief and pain that comes with being a chronic Lyme sufferer. I also hope to connect with others who are also suffering with this disease and may not know it!

I also am excited that our local hospital is going to allow us to have our monthly support group meeting there! Yes I have many high hopes for this month! In spite of how exhausted and ill I feel the drive to advocate helps me get up and get going each day!

If you live nearby please do stop by and say hello to us at the booth...if not then please look in your local area and see what you can find out about Lyme Disease Awareness and support those folks!!

Happy Easter Everyone!

2011-04-23T17:36:00.000-07:00

With Tomorrow being Easter and everyone being busy with church and family celebrations I wanted to put my good wishes out to everyone a bit early!

May we all remember the reason why we celebrate this special day and all that it means...

Our Lord and Savior has risen!! He is our salvation! I am proud to say I am a Christian and hold tightly to my Lord! It is because of his love I am here and it is his strength that keeps me going everyday!

John 11:25-26Jesus said to her, "I am the resurrection and the life. He who believes in me will live, even though he dies; and whoever lives and believes in me will never die. (NIV)

God Bless you all and Happy Easter!!

40 Blogs to Follow for Parkinson's Awareness Month!!

2011-04-20T16:33:00.000-07:00

Today I recieved the following email from Roxanne McAnn ...Thank you for your kind words and for sharing my blog on your site nursingschools.net with others!

Hi,
We at “Nursingschools.net”, wanted to let you know that we featured your blog in one of our recent articles on our own blog. (40 Blogs to Follow for Parkinson’s Awareness Month), is linked below and could be a fun way to share this announcement with your readers.

http://www.nursingschools.net/blog/2011/04/40-blogs-to-follow-for-parkinsons-awareness-month/

Either way, I hope you continue putting out great content through your blog. It has been a sincere pleasure to read.

Sincerely,
Roxanne McAnn

Why Would Anyone Fake This???

2011-04-16T22:33:00.000-07:00

This month has not been too much different from any other month. My pain seems to have increased. I am on a lot of medications right now and honestly that is the only thing I can think of that would exasperate things. Am I herxing? I'm not sure. Is it just Lyme issue I don't know that either. I don know I am way more exhausted these days too.

As I sit and write this tonight I am compelled to express from my heart the frustrations I personally feel with being chronically ill.

It hurts to think that anyone remotely close to me would doubt that I am truly ill. Why on earth would anyone fake being chronically ill? It was mentioned that it possibly is done for attention....what attention does one get from being sick constantly???

People who doubt that I am ill obviously don't know me at all; at least not the way I thought they did. This hurts deeply. I cried. Yes I did. The first thought that came to mind was how insensitive and cruel. The next thought that hit me was I would give anything to not be in constant pain and to be healthy. I miss working something awful.

Why would anyone think that one would fake hours and hours of sleepless nights because your body is riddled with pain. Why would anyone think that forced afternoon naps due to severe exhaustion were something to be embraced. Why would anyone think that vision issues, speech issues and walking issues are something to fake??? I ask you Why???

Maybe my downfall is I am too open. Too honest about my pain. I write about here in my personal blog for all to see and I often post it up on Facebook too. I have always looked at it not as complaining but giving others a glimpse of what living a Lyme life is like. Trying hard to bring light to a disease that is often ignored and obviously misunderstood!

It sucks!!

No easier, prettier way to express it. It takes over your life. I gladly show all my test results for all my virus's and bacterias my body now harbors within it from the bite of one stupid small tick!! I figure it had to be small as we never seen it...only the rash after it was long gone remained. Proof that most Lyme patients never get!

I have endured within the last 7 years two diagnosis from doctors saying I was dying OPCA and MSA, and a diagnosis of Parkinson's Disease, which has a revised title of Parkinsonism now since I really don't fit the "Parkinson" diagnosis at all and my Chronic Lyme Disease label.

A label that obviously isn't leaving soon.

If you know of someone who suffers with Lyme disease understand that it is exhausting, painful and lonely to have. Yet those of us that have it are fighters! Heck you have to be a fighter to suck down 24 or more pills a day! Trust me no one does this for attention!

There isn't a day that doesn't go by that I don't wish I'd never been bit... Yet through this journey I have met some of the most caring, loving people...also because of my journey and sharing others have made the decision to be checked for Lyme disease and found that they too have this debilitating disease instead of other diseases such as MSA or Parkinson's that they were told they had. To me that is a blessing from this disease...to help others get checked and properly diagnosed so treatment for them can begin.

I hope that before folks criticize someone for being chronically ill and assuming they are faking; think twice before they open their mouth to others with their assumptions. Some how the unkind words always get back. It hurts deeply.

I so wish we lived in a perfect world. In a perfect world folks would be there for one another, loving, caring and giving of ourselves in some way to another to lift each other up...not down...

Yet as cruel as reality is...this is not a perfect world for if it were there would be no Lyme disease or other diseases...I guess that world comes to us if we believe when we leave this one.

On the Advice of Esther

2011-04-03T17:55:00.000-07:00

Last month on the nineth I had seen one of my two LLMD's.

It was decided at that visit that I would add the antibiotic Doxycycline to my daily regime of Biaxin and Flagyl. It was also decided that once a month I would do the Flagyl for an entire week instead of pulsing three days a week. This last week has been the first full week of Flagyl twice a day! Yes, it has been seven days straight taking Flagyl along with the Biaxin and Doxycycline

... Aside from being upset that I have to avoid the sunlight at all times while on Doxy; to keep myself from getting what is called a "doxy burn" I found myself towards the end of the week contemplating the idea that I no longer had Lyme Disease.

I reasoned within myself that I am on all of these antibiotics and doing quite well with no real adverse side effects experienced at all. I was so excited at just the thought of no longer being debilitated with this blasted disease!!

What a STUPID notion it was to think the Lyme Disease could magically be gone!!

On Friday I noticed I was very irritable. I had a busy day doing errands, some of which I really didn't feel like doing and by late afternoon I felt exhausted and angry at the world.

When I awoke on Saturday my body felt stiffer than usual. I always have a rough time getting up and moving; however, it was increasingly more difficult. The irritability was also still there. It was apparent; the slightest annoyance internally felt huge. I felt like I was about to explode!! We attended a family gathering that night and the all too famous from the past "off" feeling had crept in. I tried hard to ignore it yet by the time we arrived home that night it was the all too familiar sensation was back.

My nights sleep was anything but restful. As the bright sun shone through the slats of our shutters I rolled my body to face the other direction...it was at that very moment the obvious could no longer be denied. I hurt. My feet hurt, my calves hurt, my thighs hurt, my lower back hurt, my arms, wrists and hands hurt...parts of my face felt numb...That missing for some time deep within Lyme achiness and severe fatigue.

Hubby and I managed to make it out to a very late breakfast at our favorite eatery in town. I felt so hung over, yet hadn't had a drop of wine at the party the night before (you can't have any alcohol while taking Flagyl or you will get very ill). A strong cup of coffee sounded good and it was. As we finished our breakfast I suddenly felt ill and thought I might even pass out. How could this be?? I haven't felt like this in a very long time.

As we piled into the car a conversation I'd had just the night prior with my friend Esther popped into my head "You know Karen, sooner or later you need to listen to your body and take better care of yourself. I think you need to just spend a day at home in bed" when I had hung up the phone the night before I thought she's right I have been going, going, going. I often push my body as if I am not chronically ill.

Who wants to be chronically ill?? I haven't come across one person who will raise their hand to accept the challenge!

So on the advice of Esther I have spent majority of today in my favorite chair and ottoman watching television. Anyone who knows me, knows I rarely sit and watch T.V. There were calls to make, emails to answer, files to send to folks...I did none of it. This is the first time I have been on the computer today; however, I did post to my Facebook page from my iPhone in my chair! I am still feeling depleted, still foggy in the head (if you ask my brother I am sure he will tell you I have always been this way!! : ) ) and my body, oh man does it hurt...please don't even think of poking me in the side!!

So Esther here's to you my sweet friend...I did as you ordered...I laid around majority of the day...

Now I only hope tomorrow I will be able to get out and do some errands!

Lyme Disease in your Neighborhood!!

2011-03-22T20:51:00.000-07:00

I find it increasingly frustrating and difficult to stomach people and forums alike who neglect to give Lyme Disease the recognition it deserves as a true real disease.

After 6 years of going from doctor to doctor seeking a correct diagnosis for what was making me so ill I was elated to finally have a concrete true disease. Little did I know two years ago the path I really was being thrust onto.

The last two years for me have been nothing short of an adventure. I have learned a lot about how important supplements are in this battle. Daily I fight the battle of "good" nutrition and how necessary it is in this fight.

I have grappled with numerous medications and side effects that come with them. Only to find out there were more yet to be tried.

Yet through all of this the most disappointing issue I am faced with over and over again it is the ignorance of not only the medical professionals but also a society that does not know anything about our disease or our battle!

This has proven to be exhausting!

I can't help but wonder how many more Lyme patients will suffer due to ignorance? If we have insurance it is of no use to many of us. Our disease is not recognized as a true disease. Often we are forced to choose alternative medications because we cannot afford the ones we ought to have! One month of IV Rocephin runs roughly $1,600.00 who has that kind of money?? At a time in life when we struggle to keep not only our jobs but also our homes...forced to make choices that often our meds are put to the side.

Tonight my words are directed at those of you who ignore our disease. It is real. It is for many of us nothing short of debilitating....It sucks...

We are human beings, very ill and fighting to live healthy normal lives once again...we are Mothers, Fathers, Son's, Daughters, Grandmothers, Grandfathers, Aunt's, Uncles, and sadly babies, children, teens and YOUR NEIGHBORS....don't ignore us...help us...stand with us...see our disease for what it is....

I bet if you took the time to ask you'd be surprised to find Lyme Disease is in YOUR NEIGHBORHOOD!!

My LLMD's My Hero's

2011-03-15T20:38:00.000-07:00

Last week hubby and I made visit to my LLMD. It was a good trip. It was a frustrating trip. It was a costly as usual trip.

I feel I really haven't any right to complain about the cost part of our trip. For the last two years I have been fortunate that our health insurance has paid their portion 80-85% of my out of pocket costs for LLMD visits and meds...Unfortunately as of February this year when I became a Medicare recipient that all has changed.

Our government doesn't recognize Lyme Disease as a chronic issue. Medicare doesn't cover it. They now are my primary health care provider. So to sum it up...I'm screwed. All Lyme doctor visits are now "out of pocket" no reimbursements any more! This is common to majority of Lyme patients.

My LLMD did numerous blood tests. We are rechecking my CD57, C4a, Babesia Fish, serum copper, Chlamydia Pneumonia and a slue of other bacterias that I have come up positive for in the last few years since my Lyme diagnosis!

By the time our visit concluded my out of pocket was little over $800.00 that did not include any meds or supplements! I ended up feeling very guilty. Guilty that my illness has taking everything financial from us. At our age this is not the retirement we envisioned at all!

Today was not an easy Lyme day by any means. Yet I am here alive. Recently the doctor who told me I had MSA was shocked to see I had deteriorated just a little bit in the last year...she expected way worse by now...that statement said a lot to me on many levels. It was exciting to hear this doctor come out and say she expected me to be so much worse off by now and I am not....yeah I know it's because I don't have MSA I have Lyme...but it also shows me she is starting to see how Lyme Disease can neurologically effect a patient...and possibly improve with treatment...Maybe just maybe before her next MSA diagnosis she might check for Lyme Disease!

I'm thankful that my Lyme treatments are slowing down the progression of any neuro issues the disease has caused!

My LLMD's are the true hero's in my battle! Without their expertise and continued support this battle more than likely would be well on its way to being over.

My body might be riddled with Lyme and all its little armies of co-infections it has brought with it...however, I am far from throwing in the towel on this battle!

As I look in horror at what is happening right now in Japan...it makes my issues in my battle minute...puts it all into perspective really quick.

Help a Student with her Graduate Project

2011-03-04T20:04:00.000-08:00

Hi there eveyone!

For those of you that have Lyme Disease I wanted to intorduce you to Dawn DeNiro who is a Lyme sufferer herself.

Dawn is hoping for the Lyme communities participation. She is doing research for her Graduate Project and has chosen the topic "investigate the impact of social media on patient education in relation to Lyme Disease".

I hope you will check out her blog and support her research project!http://lymegradproject.blogspot.com/

How Cool

2011-02-27T22:30:00.000-08:00

I received a phone call today from my dear friend Pokie. She called to congratulate me on a recent blog recognition I received. I was shocked when she told me that I had made one of the top blogger's for a Movement Disease!

Removing the Mystery: Top 49 Blogs About Parkinson's Disease

Top Blogs About Movement Disease
Learn more about Parkinson’s disease by reading these blogs about other similar diseases.

26. Metamorphis of Btrflynana She has been diagnosed with many different diseases from Fribromyalgia, OPCA, Myastinia Gravis, Parkinson’s Disease, and Multiple Systems Atrophy. However the one that got it right was Lyme disease. Learn more with a read of the blog.

Wow I am humbled to be categorized with so many talented blogger's such as Pokie (Coffee with Pokie) and Marian (Walking my Path with Parkinson's) two special friends! Please be kind enough to check out their blogs!

Not to forget the many other bloggers' named at the site! Please take time to check it out!

Thank you Healthcare Technicians for the recognition!

Congratulations Phyllis Mervine

2011-02-18T23:33:00.000-08:00

The Jefferson Award has been awarded to CALDA's founder Phyllis Mervine!! Woo Hoo!

Thank you Phyllis for you indefatigable efforts in all you have done to bring awareness to the world about Lyme Disease and its ugly ramifications on us!

Sweets Eradicate My Day

2011-02-08T20:34:00.000-08:00

One of the hardest things for me lately is to stay away from sweets. I crave them. I want them. I go in search through our cupboards for them.

I love having our grandchildren here with us; however, our daughter has an array of goodies in the house for them. There is sugar cereal, crackers, cookies, chips and candy for various holidays all packed nicely away in the pantry.

I know over and over everything I have read about Lyme disease is that the little bugs within our bodies wrecking havoc with our lives from every direction one can think of love sugar. Thus is the reason carbs are on the no, no list...why?? They turn into sugar. Sugar is also on the no, no list.

I don't know about you, but when I am feeling down and out, frustrated, angry and just plain old sick of being sick....I want sugar. I want something that tastes good...something to sooth my inner pangs and frustrations!

The only problem is once I allow myself the indulgence guilt sets in. I feel I ought to have been much stronger than to have given into the craving!

Maybe I need a new attitude.

Maybe I might take satisfaction in knowing I am starving what is making me ill...LOL it is the only part lately I feel that I can control in this war! The meds don't seem to work. I find that hugely frustrating!

Yes one of the sure things in this battle is what I eat. Also I hate the fact that in order to get well I have to give up so many comfort foods I enjoy. It's not that I don't want to get well. I guess I am tired of living my life around Lyme. It does rule over so much.

There is the box of meds and supplements that are the daily routine. The fatigue and pain. The absence of a social life for hubby and I because I am often not feeling well. The lack of sleep...Oh heck my list could go on and on if I wanted.

I guess I need to leave the sugars alone. Yeah, tell that to the emotional side of me next time the craving hits and I am on the prowl through the kitchen!

Thank You Medical Billing and Coding

2011-02-04T21:43:00.000-08:00

I just discovered a site by Medical Billing and Coding that has been kind and awarded my blog as one of the Top Lyme Disease Blogs of 2010!!!

Please check out their page here and visit the other blogs awarded Top Lyme Disease Blogs of 2010!!

THANK YOU AGAIN!!

My Message to You All

2011-02-03T20:27:00.000-08:00

Anyone who is chronically ill knows how difficult it is to maintain a positive attitude at times. I have been in a funk way too long now.

Being ill with additional issues the past few months such as colds just complicates it even more.

My biggest frustration is issues with tolerating my antibiotics. Seems my system is overly sensitive to whatever antibiotic is given. This issue in particular is making my battle a bit frightening.

Inner fears well up inside often. Concerns that there may be no antibiotics out there to kill what is making this journey increasingly more difficult! Hubby and I met yesterday with my LLMD. I have often read on line through other Lyme sites/groups that no one really ever beats this disease. Lyme goes into remission. Then if your lucky it won't come back.

This very issue came up yesterday at my appointment. The answer we received didn't surprise me; however, hubby was a bit uncomfortable with it. It was just as I had read. If a Lyme sufferer is lucky to get "symptom free" it is more likely their issues will return. Hubby piped up and asked "Like how soon? Twenty, Thirty years?" the reply I was not ready for "No, more like within two to three years"

The look on both our faces must have been that of fear, shock and heck I don't know what else. My LLMD added "The positive side to this is that once issues return I have found we hit them again with treatment and each time it takes longer for them to return" I am assuming this is what folks mean when they say Lyme treatment is similar to Cancer treatment...you pray for remission and pray hard it stays away for a long, long time!!

My LLMD brought up the possibility of my starting to use colonics...some how I just can't bring myself to do that yet. I was quick to argue my side of why I felt at this time we could skip this part of possibly adding this currently. Luckily I got a temporary reprieve for now on this one! I have read where Lyme patients swear by coffee enemas...mmm nope just not ready to do this one yet! INeedCoffee explains it well.

Once again I have been told I am one of the difficult cases to treat! Great! Just my luck!! I have pretty much exhausted all the antibiotics that are the "cyst busters" Click here to read a excerpt from the book "The Top 10 Lyme Disease Treatments" it explains about this issue that many Lyme patients deal with.

Currently I am taking Flagyl 250mg twice daily. I am doing what is known as pulsing. I take it only three days then take a break for the rest of the week then start another three days. I was supposed to be doing it three times a day; however, it is kicking my butt. I was pleased to hear my LLMD say that what I was doing was fine. Seven days a week I also take Biaxin 500mg twice daily.

I am back on VSL3 Probiotic and starting to take my daily regimen of vitamins and other supplements to help build up and keep my system up to battle!

More and more I am finding out just how important ones eating habits play in all this. I was going to say "diet" however, the last night my friend Esther had a good point. I had shared with her how I have been reading (LOL I am now reading it for the third time and actually retaining some of it!) "The Lyme Diet" book by Dr. Nicola McFadzean. Esther had said she wished it didn't have the all time dreaded word "diet" in it. She felt it needed to have a more positive connotation to it. Maybe that is one if the reasons for the past two years I have had so many issues staying faithful to my "Lyme Diet"

Just recently I have had a huge change in attitude. I spoke with my LLMD about just how important is ones diet in this fight. I was told it's extremely important. The Lyme Diet book puts it all out there in simple to understand description. The whys one's diet is key to successfully becoming healthy. One thing that really caused me change my attitude was when she says how we the Lyme patients are the "hosts" to the bugs...Ewwww...when you think of yourself as being a host to something that is making you so ill it's really not all that difficult to follow the plan...

The plan basically is NO SUGAR, NO CARBs...brown rice is allowed in moderation...but all my fellow Lymies know all this....right???

So I guess my message tonight to you all is this...

If you're not serious about your diet and how it is not helping you recover and kill the bugs within...GET SERIOUS...after all this is our lives we're fighting for! Take your Rx meds and keep your body filled with good supplements and foods to help it win the battle!!

Bart Fenolio Goes Home

2011-01-09T12:54:00.000-08:00

Lyme Takes another wonderful man from this world. Bart Fenolio made headlines not only in the ALS community but also the Parkinson Communities when he was told he had ALS...Only to find out it was Lyme Disease!

A few weeks ago Bart's battle ended and he has gone home to be with our Lord.

God bless you Bart and your family.

You can find Bart's Blog and personal story here

My New Year Resolution

2011-01-09T12:07:00.000-08:00

It has been nearly two months since my last post. I promise to my readers to be more consistent during 2011.

Christmas was wonderful and yet bitter sweet with the absence of my father this year. It was a hard reality blow realizing the finality of death. The lives of so many effected by the absence of a great man.

I took a hiatus from Lyme treatment during the late November and all of December months. I just could not live my regimented life of antibiotics and supplement regime and deal with the holiday demands.

Now I pay the price for making that decision!

I visited this last week with my LLMD. He/she was very gracious in excusing my terrible holiday diet and interruption from treatment.

I have new issues with neuropathy. It has hit my arms and hands. So bad that my hands often go to sleep...pins and needles...not in just one hand but both. It's a real pain in the rear to deal with. I can by on my computer, on the phone, watching TV or in bed...The neuropathy has spread.

I have started back on treatment. We are trying new antibiotic for me Biaxin 500mg 3x a day and then next week I will add Flagyl 250mg 2x day, 3 days a week. I am exhausted so badly that I am only able for short periods of time to do something and then I need to sit and rest. This is very hard for me as I am used to being able to push my body.

I guess my body has had enough of my pushing. I have come to realize why I push so hard. When I keep busy, moving, over-doing it...I don't pay attention to the pain. I am able to ignore the fatigue; however, when my body gets as exhausted as it now is...there is no pushing. No pushing even if I try.

I work very hard at hiding my Lyme issue. Each step I take is painful. When I lift my arms up they protest in pain. This is the effects of having been bit now 7 years ago.

So my 2011 New Year resolution...Is to be kinder to my body. To accept that I have a chronic disease. A disease that demands I eat properly and rest when needed.

Happy 2011 New Year gang. May God be with you throughout the year and may you have good health.

Please Watch This!!!

2010-11-26T19:06:00.000-08:00

To all of you who suffer with PD, MSA, ALS, Chronic Fatigue Syndrome, Alzheimers Disease, Fibromyalgia, Rhuematoid Arthritis and Lupus please watch this! Please open your heart to hear this important information!

sorry this is no longer available...