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UPDATE ON MY NEW COURSE OF ACTION - I'm so tired of this...

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Posted 6/15/2009 10:29 AM (GMT -7)
I'm so tired.  I saw my LLDr. today and here's the plan:

GET LAB WORK DONE AGAIN - MY MONTHLY LEACHING.  Finish Levaquin this Friday.  Start Diflucan for 1 week ending 06/26.  Make an appointment with the hyperbaric chamber doctor.  Do an Invanz IV 7 days a week for 4 weeks along with the hyperbaric chamber 5 days a week.  Possibly add gamma globulin every 3 weeks (depending on the LAB WORK - as usual).  Add Flagyl the 2nd and 3rd week of IV.

I get more support on this board sometimes than I do my own family.  My husband is WONDERFUL and is there for me.... says he's not going anywhere!

I called my parents... BECAUSE THEY ASKED ME TO...to update them on what the doctor said.... My Dad, who hasn't watched the DVD "UOS".... although he started to and then got interupted by the neighbors.... and now my step-mom is claiming the DVD stalls and skips... I told them to dust off the DVD and try it again.... but I'm over it... I don't think they'll ever watch the darn thing.  God forbid they spend 2 hours watching a video of what I've been going through for 9 friggin' years.

My parents did see the "mystery diagnosis" with Brooke Landeau (who ended up using a HBOT too) and she got almost completely better.... but now my dad "doesn't remember"..... and he had to let me go so he could continue washing windows with my step-mom.

I am going to have a pity party for myself for a little while and then try to shake it off.  One thing about self-pity, no one else is going to do it for you! shakehead smhair shakehead

Posted 6/15/2009 1:46 PM (GMT -7)
Jelaine,

Your treatment plan sounds awesome! It looks like your doctor is really being aggressive and wanting to get the ball rolling. I know how hard it is with family. I've been through it myself and because of this board, I've finally opened my eyes and started to move on and heal. Do what you have to do to get yourself healed. I've learned that I cannot make anyone understand what I am going through. I've been asking my oldest daughter to watch that video. You think she has? Nope. But she gets on Myspace and everything else. I still don't have an answer as to why people are that way, but I'm seriously tired of worrying. I'm gonna do me from now on!

Btw, even though you don't know me, you have a friend in me. I'll watch the video again for you! Big Hugs! I'm so glad you're starting treatment.
Posted 6/15/2009 2:21 PM (GMT -7)
My husband isn't there at all. Aren't you blessed!
Posted 6/15/2009 2:59 PM (GMT -7)
At least you have your husband and you have us! The important thing is that you are taking care of yourself and if your husband is there for you, that is a lot! They don't know what you are going through or they would be different about it. It's easy to expect parents to be more than they are. We just have to be thankful for who is there for us, and not expect what people aren't ready to give or be.
Posted 6/15/2009 3:08 PM (GMT -7)
I'm glad your husband is there for you...that is so important to have atleast one person behind you. The move Under Our Skin is excellent and really educated me on the topic. Especially since I'm new to the disease.

Regards,
Posted 6/15/2009 3:29 PM (GMT -7)
Hi,

I have been looking out for your posts and keep hoping to find some good news, this seems like good news, you will be trying something new and hopefully it will work for you, dont eat yourself with the people that dont understand, just do what your doing and appreciating your husband for standing behind you, all I can say I really feel bad for you and for sure this time you will kick it!!!

Posted 6/15/2009 6:12 PM (GMT -7)
Thanks everyone - I feel really blessed to have you all and this site to post on.
Posted 6/15/2009 6:35 PM (GMT -7)
You know u will have to go there and sit w them and watch it to make it happen. I had to fight w my daughters fater to get hm to watch it. He was practically yelling no he was yelling at me so annoyed then he shut up were watched it. When it was over he said....We have to get her tested (my daughter). My father wasnt very sympathetic until he watched it either. I asked his girlfriend to bring it up that she wanted to watch it and he did you know how that works.
So i did make them....it is so strange the anger it provokes though until they come out the other side the side where they know the truth about Lyme.......-V
Posted 6/15/2009 7:46 PM (GMT -7)
Jelainep, I understand that you're tired but glad you have a new plan of action. With each new plan comes new hope.

As far as support, you're fortunate to have your husband and of course you have all of us.

I still haven't figured out how to deal with the anger and sadness I feel over my family and friends inability to understand just how sick I am.
Posted 6/16/2009 10:30 AM (GMT -7)
Hi Jennifer,

Is this to treat all the new things your bloodwork discovered?  Most of that stuff I have never heard about.  I hear you on the family thing, my RN sister couldn't even be bothered to ask how I'm doing.  If I was having a heart attack she'd be right there!  She used to be a cardiac care ICU nurse and now does cardiac rehab.  Be thankful for your husband, sometimes I feel so alone with all this.  Hope you are finally making some progress. 

Take Care, KO

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