Where do I begin? An update about me and me and more me since LD has made me VERY self-centered

I haven't been around for a while due to treatmeents and feeling like craapola, etc.

I recently finished 10 weeks of IV Rocephin plus other rx's.  At times I felt like I had more energy, but the energy still only lasted about 1-3 hours a day.

I think I had one bad herx, the night of the Democratic nomination.  My husband took a picture of me sitting in our bed.  I have an ice pack strapped to my head (by my robe tie) and another bag of ice on my left shoulder.  I'm holding my Rocephin IV ball against one of the ice packs because I was waiting for 9:00pm to start my IV.... and had to keep the medicine cold.  I have a towel on my head covering my right eye becaue I could not tolerate the light from the TV.  And, I'm tearing up over the Dem. nomination because I felt that history was being made in my lifetime and I was very emotional... that picture is probably one of 3 that have been taken of me in the past 8 years!

Anyway, after the IV stuff was over, my LLDr. looked at me and said, I'm going to start you on some new abx's.... "and you're going to get worse."  AAAAAAHHHHHHHHHAAAAAHHHHHHH - I said quietly to myself in my head - to my 2 remaining brain cells.

So, I finally bit the bullet (after 8 years of torture) and went to a Pain Management doctor (recommended by my LLDr) because if I was going to "get worse", I was going to be on pain drugs first.

I started the Levaquin and Rifampin yesterday.  The Lyrica prescribed by the pain dr. seems to be working... although I feel a little stoned and hung over (but in a fuzzy kinda good way - and NO headaches!).  The pain dr. also switched me off Restoril to Rozerem.  She said Restoril will knock you out, but it does not help provide quality sleep like Rozerem supposedly does.

I am slowly getting back to some assemblance of a life, but I can tell it's going to take more time (it always does).

As always I thank you guys for being here so I can dump a little and b%^$h a little....

I love emoticons, but we need one sitting on a toilet, one puking into a trash can while sitting on the toilet, and maybe one with a rash all over the face???? Just a few suggestions. 

Hey Jennifer-

Glad to hear you are back amongst us.  I asked how you were doing, if anyone knew about a month ago...no answer.  So I am glad to hear you are still hanging in there!

How is Dr. C?  I have not seen him for a couple of months.  I see him again in Jan..  Thought I was doing much better...only on Diflucan right now...off all other abx's since June.

Then this week not so good.  Alot of aches and light-headedness.  Not sure if it is relapse, or something else.  Another wonderful thing to ponder with this disease!

Anyway, stuck myself back on my old abx therapy last night and we will see if I feel any different.

Hang in there, he had me on the same abx combo as you are on...but only for 3 weeks.  I did not test positive for Bart, so maybe it was just a shot in the dark.  I did OK on it.

Glad you went to a Pain Management Doc....need all the help we can get!

JELAINEP - hang in there! I often think that and of course we aren't supposed to - but, it's so fricken hard...so, when I do get all down, I flip through my i-pod and blast "I DREAMED A DREAM" from Les Miserables...here are the lyrics, if you are not familiar - you'll be able to pick out the lyrics I sing at the top of my lungs... I find it helps me get it out so, I can act 'normal' around everyone else...NOTE - I am not telling you to feel down about yourself or what you (and all of us here) are going through (all in our own way) HOWEVER, as I mentioned, sometimes we just have to get it out - so, we can fight this battle with a clearer head:

There was a time when men were kind
When their voices were soft
And their words inviting
There was a time when love was blind
And the world was a song
And the song was exciting
There was a time
Then it all went wrong

I dreamed a dream in time gone by
When hope was high
And life worth living
I dreamed that love would never die
I dreamed that God would be forgiving
Then I was young and unafraid
And dreams were made and used and wasted
There was no ransom to be paid
No song unsung, no wine untasted

But the tigers come at night
With their voices soft as thunder
As they tear your hope apart
And they turn your dream to shame

He slept a summer by my side
He filled my days with endless wonder
He took my childhood in his stride
But he was gone when autumn came

And still I dream he'll come to me
That we will live the years together
But there are dreams that cannot be
And there are storms we cannot weather

I had a dream my life would be
So different from this hell I'm living
So different now from what it seemed
Now life has killed the dream I dreamed.


My sister who also suffers from Lyme, went to a meeting recently and she called me after leaving the meeting to tell me what the speaker said that resonated with her - he introduced himself as a Lyme Disease overcomer...that should be all of our goals! And I am so thankful I have a place like this where I can just be me... : )
Good luck to you and feel better soon!

Dear Jennifer,

I have  missed you so!!

I am so glad to hear from you; not so glad to hear what you have been going through but am once again impressed by your amazing attitude of survival and kick it to the curb perseverence.

I hope, hope, hope this resolves so many of the residual symptoms you've had to suffer through. 

You are precious and I look forward to hearing how this next leg of the race goes for you.

I have only one request though!  Send me a copy of that pic your hubby took.  I want it on my wall in this little office that captures so much of me.  I'm not kidding!  Maybe Heth will agree to swapping one for another.  Ha!

I am praying for you, esp. more knowingly.

You hold on dear friend.

I'll look forward to hearing from you soon -

When all is better, you're going to bring that sense of humor to PA. 

I had to laugh at your emotican idea.  Please don't design those though.  The word picture-idea is enough for me.

Blessings,

Sojourner (~di)

Jennifer,

I'm so glad to see that you're back, (if not better)!  I love the visz of you on election night!  Hope the next round of meds helps.  You brighten everyone's day with your wit and humor!  Take care!  KO

A picture is worth a thousand words.  TY.  Keep fighting with all that is in you!!