posted
i am lymesick for years. but i still dont know how to deal with my rage againt the ducks, who made me sick (by telling me i'm fine or even giving me steroids).
i know i should concentrate on positive things of life and on my therapy. but i find that really difficult. i still have to think a lot about those cynics who got money for ruining my health. how do you deal with that?
steven (currently on mino, plaquenil, fish oil, green tea pills, alpha lipoic acid, probiotics, garlic, multivitamin, vit b, q10, bovine colostrum)
Posts: 226 | From earth | Registered: Sep 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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After you get better (or now and then along the way when you have some energy to spare) you might share information with others so as to help prevent further abuse by doctors who are ignorant. You can help stop the cycle.
You only have room for so many toxins in your body and in your psyche. You have only so much energy for a fight (or new term, "project"). You have to let go, as hard as it is. Your project now is to get better.
Do what you can to physically MOVE the toxic energy out. A walk, Tai Chi, etc.
I find it important to MOVE it out. In its place, plant determination to get better. In the place of doctor abuse, nurture yourself with healthy food.
This is your vote: give yourself what you need. That creates positive space.
I have anger too, esp. against those who gave me steroids and never did a Lyme test.
I don't know what to do with the my anger and distrust either. Mine comes and goes and it comes less often than it did (3.5 yrs into my LD diagnosis). I do think a lot of us have some form of PTSD from all we've been through.
Anyway, I wanted you to know you're not alone.
But I try to be thankful for my diagnosis and good LLMD! I'm so glad I got the LD diagnosis before MS etc!!!!!
Wishing you (and the rest of us) some peace, Allie
Posts: 300 | From Northeast | Registered: Dec 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Allie,
Very good point about the PTSD. I see it as huge shock. Our bodies are in shock enough from toxic infections and nearly imprisoned by the symptoms. Our brains are swimming, gasping for air to carry our thoughts . . . and then we are abused by the very doctors who are supposed to help.
That further sets the SHOCK. And then the widespread nature of this also simply goes beyond comprehension. How could just an organized system of intentional abuse be normal business by the IDSA? It is such as horrific situation that we are stunned.
I had dozens of falls and seizures in the presence of top neurologists, etc., who just sat there, dazed, saying, "well, you seem normal to me." How is that not a shock? And that happens everyday for many lyme patients around the world.
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Still, I'm not well enough to have room or energy for that anger. I'm still in triage, scrambling to get better and must focus on what I need to do for that. At best, I simply have to move it on out, making room for what can help me heal.
Where I can help others, I will, but the extent of the abuse in the system is just too huge for me to rail against without further depleting my strength to scramble out of the line of fire.
--
Some may find that going to a LL therapist would be helpful. There are ways to learn to acknowledge and express anger that are productive.
I went through some of that during some difficult times in my life so I do find those skills carry over. Anger is legitimate and expression is important.
A LL counselor or therapist may be very helpful. If they are not ILADS-educated, I can't imagine they could begin to understand this, though.
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Keebler has some good advice.
It helps to understand that the majority of doctors are only following what they are told. Most honestly believe they are doing the right thing for the patient.
In my view, there are only a small number of doctors who deny lyme in spite of knowing the truth. The flaw is with our medical system and the way it allows a few money hungry, uncaring doctors to run the show.
posted
Just a suggestion: Write a letter to each of the docs who missed the diagnosis. That's what I did. Wrote one letter, made 20 copies, and sent it to each, along with pix of my Lyme rash that was misdx as ringworm, and the IGENEX test results.
Let them know how the misdiagnosis has affected your life. Tell them to get educated about this disease, that it is an epidemic, and that mainstream medicine's response to it has been a public health disaster.
By doing this, some of the anger will lessen, because you are letting off some steam. And you're educating these docs at the same time.
Only do this when you have the energy for it. Some days you may only be able to put a stamp on a letter. Other days you can do more.
-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
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posted
I think anger properly channeled is a powerful thing. But for the power to bloom, anger can't run your life. First one must acknowledge that the anger is there, what caused it (even if it is ourselves). For me it took me a long time to acknowledge I was really sick. I ignored all the signs for years.
And we all have our own abilities and strengths; when the time is right we can use these abilities to try to help so others are not put in the same position we were.
For me, part of my healing is acknowledging my anger and trying to redirect it in a positive way. I have done what I could for the LD cause up to now and hope to continue to do so as I heal.
There is a difference between anger and violence, with absolutely no excuse for the latter.
Peace, Allie
Posts: 300 | From Northeast | Registered: Dec 2006
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
I understand your frustration due to the decades I've spent being told that there is nothing that can be done only to find a few years ago that it is lyme disease.
If you really feel that an assault rifle is the way to go then please get some counseling. You will heal much faster if you deal with your anger in a constructive way.
Turn that anger into something positive by channeling it into educating as was suggested by Paulie. That is much more likely to produce the results you desire than violence ever would.
I understand and agree with Keebler. With all the violence that has recently been associated with lyme, we must be careful not to turn the public against our cause.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i just let it go. i have spent thousands of dollars on ducks...it just makes me angry that the medical community is still saying lyme doesn't exist....
i feel so sorry for people who can't get diagnosed and treated...
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
Pray for them. Forgive their "sin" of arrogance (if applicable).
Let go of the anger.
You MUST NOT harbor anger as it will interfere with your healing.
I know this is not easy!
Posts: 9481 | From Sunshine State | Registered: Mar 2001
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posted
You guys are right, the anger feeds this disease and all this craziness.
I know better now. Distancing myself from the naysayers, meditation, solitude, have all been helpful in reducing the crippling stress.
Posts: 501 | From Cleveland Ohio | Registered: Apr 2009
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We went through hell last year trying to get my daughter diagnosed. Her pediatrician put her on doxy and she was getting better, but after 10 days she took her off of it and refused to refill it. This left my daughter spiraling downward until we got her to a pedi lyme spec.
I was so relieved once she saw the specialist and was diagnosed, but the damage done from the ignorance of the former pediatrician has left her in a wheelchair (temporarily). The hospital was just as ignorant, too, because after six visits I would think they could have clinically diagnosed her.
So what I did was write the pediatrician a certified letter letting her know how negligent she was. I took my time and made sure it was written on her level and pointed out everything that she did wrong. She did reply, but I wrote back again by certified letter and have not heard back from her. She got the message.
My daughter also wrote her feelings in a letter to her, and we mailed it by certified mail.
I know this won't help the situation you are in, but it does release most of the negative energy you are holding inside. After you do this, you can focus on what is important, and that is getting better.
We can only hope that the information we write to them will help future patients that they see. Good luck, and I hope you feel better soon.
Posts: 51 | From Connecticut | Registered: Sep 2008
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