Ticked off about Lyme Community Group

A place for Lymies to get together to talk about things other than Lyme.

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standstrong 02/12/2009

Can't get away from this feeling I call Raging Against the Lyme. I am so filled with resentment over what I have lost and what I am hanging onto by a thread. I am so angry everytime a new symptom shows up. Today I noticed a bruise in the cuticle of my fingernail. Great. This isn't even about fear, although I have plenty of that don't get me wrong but what's the point really? This is about just wanting to beat the shit out of Lyme but not being able to touch it.... just when I think I have a grip on it, my symptoms are reducing, and my energy is returning I get pounded so hard... and my grip is lost...like a wet bar of soap it just is gone before I know what is happening. So much anger. What else makes me angry? I'm angry b/c doctor's are so stubborn and so "owned" by insurance companies, who are so "owned" by the CDC, who is so "owned" by the IDSA. In my search for a neuro I put out an email to every Lyme support group within 150 miles of me.... in the process I didn't find a lyme neuro, but I did find a person who is working on putting together cases to be presented to the IDSA (I think... not reallly sure yet but something to that effect... some kind of advocacy effort on OUR behalf)... she asked me if I would participate. I told her of course I would because maybe some of my anger can be used to chink the armor of the mighty giant... and maybe enough chinks in the armor will weaken it's power over us all. Do you think we can EVER get the IDSA or the CDC to cry UNCLE? I don't, but I have to do something constructive with my rage. So, that is the end of my rant for now. I have to go take all of the midday pills I forgot to take yesterday and try to find something for lunch. Yup.... I am REALLY TICKED OFF about LYME!

ShariA 02/13/2009

OH My standstrong... I may as well copy and paste your post and re-submit it. You sound exactly how I feel. I started my AX about 45 days ago and thought two weeks into Tx that I was herxing... Well, I was WRONG! I am herxing NOW! I didn't have a clue! My ass is being kicked all over the mound. I start to regain what I think is a posture and I go right back down to the jelly fish with no spine. Maybe I was alot sicker than I realized and ok the Tx is working but what the heck am I to do. I have kids to take care of and I'm already fried and questioning how much longer I can take this before I quit. I'm stumped, stupified and out of control. I miss you guys as well. The only people on this freakin earth that have a clue as to what I am experiencing and I can't find the slightest piece of energy to post. I must remind myself, that now is the time I need you. The kids will have to post for me. You hang in there. Easy for me to say to you when I can't do it myself. How lowly do we have to feel? YES, I AM REALLY PISSED OFF AT THIS DISEASE AND IT CAN KISS MY ASS!!!!!!!!!!

standstrong 02/14/2009

I so understand and am so sorry that this is hitting you so hard, too. I keep telling myself this will get better...this too shall pass. I just didn't think it would take THIS LONG, or take so much from me in the process. Yup... I'm pissed off, too. I think I am going to take a medical leave from work. To me that feels like a nail in the coffin and I am just delaying the inevitable. But, that feels like the best choice for me right now.

I'm glad you are still popping in to DS.... you will find the support you need, but I know it's just one more thing to you somedays. So, do only what you can... do only what you feel like. We'll still be here when you get back. hugs to you... Donna

deleted_user 02/14/2009

This is going to sound really off-the-wall, but I love hearing you both being angry about Lyme rather than whipped by it.

When I first joined this site, I remember reading posts from you that sounded like you'd been so beat up, almost defeated.

Since then, that defeated feeling seems to have turned to anger. I have a tendency that when I hit bottom, I feel defeated; and more importantly, when I'm bouncing back, I begin to get really pissed off. Then I find a way to convert that anger into action.

I hope that's what I'm hearing in this post!! I think it is, and if so, I'm so glad to see it! It can really be the turning of a corner to go from defeated, to fighting mad.

Go get 'em Ladies!!!!!

standstrong 02/15/2009

Anger is much better than depression... I like it when the anger shows up, too... it sparks me to attention and keeps me focused on what I need... sometimes it is the only thing that can help me identify what I need to do next.

deleted_user 02/16/2009

All the above, and an added hug for you.

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