I am having a hard time determining what and how much to say about my situation and health to people.
Reason I say this is, on one hand I do not want to be considered a whiner or a pain in the butt.
On the other, trying to act as if I'm "OKAY!" is far from the truth, and although it seems to make people feel better, they also don't see the possible help I need.
I am very happy with my LLMD. It is really great to be heard, to be understood, and actually feel safe with a doctor after my experiences.
I am actually having some periods when I'm feeling more clear-headed, and the physical symptoms aren't as bad. I am SO grateful for those moments!
Not that it continues ---- in fact just the other day I got lost, not once but twice, going to a place I've been to dozens of times, 15 minutes from my home.
I still have many brain and neuro issues. I am still barely making it monthly with bills and necessities. Okay, to be honest, I'm not making it at all. I pay what I can where I can.
It is depressing and frustrating to try to deal with these issues when one's brain doesn't work properly.
I have been fortunate and grateful for the assistance I have gotten from friends, services, and even people on this board. But eventually it runs out, and I'm not in a position yet to make it on my own.
I have been trying to make some good come out of all of this. I have been working on trying to organize Lyme benefits and fundraisers in the NJ / PA area. They are in the works.
However, these types of things need promotion. The radio station that I volunteer at took me to task and told me not to bring my personal life to the station. They told me that listeners and staff members had "complained and were resentful" of my talking about Lyme disease.
However, another dj brought on a member of a hospital nearby who believes in and talked about the IDSA policies on Lyme, and there was no issue with that. I guess it was because the person / hospital gave the station a rather large donation.
All of this is draining.
The Last Straw:
My boyfriend left me yesterday. He is not a bad person. He has been with me thru some of the worst of all of this, and has his own life to get back to.
I am just feeling that I wish I was "all better", faster, and not such a problem.
-------------------- The Bite: July 1995 Next 13 years: Treated for things I didn't have Symptom total: 45 1 faint Lyme IgM May 2000 5 More negative tests IGeneX says YES! 3/16/09 Finally feel human: 2012 Posts: 120 | From Plainsboro NJ | Registered: Feb 2007
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Frequent Contributor (5K+ posts)
Member # 18239
Sorry that I can't make it all better for you.
I can say that I understand where you are coming from.
My daughter has lyme but has not been able to start treatment.
I am dealing with her lyme rage and depression issues.
I am sorry that I don't have any great advice for you. I will pray that you improve and things get better for you.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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It is an unbelievable disease and people will believe the easiest thing to believe which is nothing is wrong with us, we are nuts, or something is wrong but it is not Lyme. It is much easier to believe the problem is us than that there is a disease denied by western medicine making a neurological mess of lives.
Until it is discovered what exactly is going on we will face this atmosphere.
Posts: 743 | From New York | Registered: Apr 2009
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i'm so sorry to read about this all.
then to have an idsa program; and nothing is said! HOG WASH.
i feel your pain and anguish over losing your boyfriend too; we're here for you!
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I am so sorry You have came this far into this awful world of lyme.
I hate too even say this ,but You do fit the mold of lyme diease. I just posted a rant,and after reading Your post I feel shame.
Today is My Wifes birthday,She has stuck with Me through this nightmare. We pretty much know She has lyme also,but She is fighting it off,and still working. I am so blessed. Please know You are in My prayers,and will be everyday.