On 4/13/2015 SoftRaindrops said: On 4/13/2015 Ford1224 said: On 4/13/2015 SoftRaindrops said: On 4/12/2015 SurvivedOne said: On 4/12/2015 Ford1224 said: On 4/12/2015 northernlights said: On 4/12/2015 SurvivedOne said: On 4/12/2015 finch said: "Erin did go to the Lyme doc yesterday and he told her she has made no progress. She cannot go to the "next level," whatever that means. So I expect her to stay in bed most of the time for now. She probably overdid too much and didn't stick to her diet. We are both pretty depressed." Ford, I am not a regular poster on this board, but I have read about your daughter having Lyme. Most of my family has had Lyme or one of its confections. The doctor needs to explain what he means by going to the "next level". I have never heard this. I wish I could give you the name of a very good doctor that treats Lyme patients successfully. She is in north jersey, but worth the trip. Spends lots of time with her patients.
ITA with what this poster wrote. Have read much of what OP has written in the past. Having been diagnosed with Lyme Disease myself, alot of what has been written by the OP I don't understand. I have been my own advocate, made it my job to seek out all the resources, professionals I possibly could. As well as liase with those who are going through exactly what I am. That has been my drive, my mission. It is my body, my life. My mother is wonderful, my support but she is not the one with this disease...I am. It is an uphill, ongoing process, journey. As is for those who have a slew of diseases that are beyond debilitating. I don't know what the "next level" means either. I have wonderful care...my own physician, those of whom I have been referred. Proper nutrition, doing whatever necessary, what I have been taught to boost my immune system and is crucial. Those who I have been referred to prior and did not help, they were gone. I have a computer, a telephone, a brain...and means of transportation. Those who will offer transportation if/when I am not able. No one has stolen my mind. We have all gone through a slew of trauma in our lives, no one is unscathed. But we are grown women now and whatever has happened in our past, we must deal with what is in our present. In order to become well, to move forward. To thrive when we are able. I have no space now for any drama whatsoever so refuse to allow such. If I lived in a rental at this stage, any issues with mold, I would move heaven and earth to be out of there. The possibility of my immune system being compromised whatsoever, would never allow to happen. Whatever the cost.
If you say that you have the same disease yourself, then you should know yourself that people can have the exact same autoimmune disease, but have the same disease affect them differently.
For someone that claims to have it, it appears to me that you are not showing any kind of empathy or kindness towards either Ford or her daughter, and that is what I would expect from someone who has any kind of autoimmune illness of any kind.
In my family, my husband helps me and advocates for me. That doesn't make me a "weak" person. It just means that he loves me and helps care for me, as a sign of his love for me. I am grateful for it.
I don't think this person has it in her to understand love and caring. Perhaps she has no one to advocate for her and if that is so, I feel sorry for her.
Nothing whatsoever to feel sorry for. You cannot insult me. I have a wonderful, loving family, an amazing group of friends and THE most amazing, loving and supportive boyfriend one could ever imagine. I am truly blessed and so grateful. There is reason I was eventually correctly diagnosed, eventually began receiving the right treatment as well as approval for disability benefits. From eventually finding the right individual (s), from there networking with others, others who are also in my shoes I found the right help, the right professionals, the right overall team. In the support group I belong to, in the advocacy group I am a part of...we share with those who need, who want help. And pay it forward to others of us who are greatly suffering with the hope they can benefit as well. So put your pity toward someone who actually needs it. Your need to be "right", nasty and receive high fives from your fellow posters...good for you. But how is that really working out for you... Is it getting your daughter the right medical help she needs for her or helping her in terms of financial aid/benefits. There are those, most especially others who have been properly diagnosed, who can help, who want to help and/or possibly point you in the proper direction to get that help, the right and effective treatment and much more. I am skyping with someone shortly who I am hoping can be referred to one of my physician's colleagues in her area for help. So please, you or anonymous "friends" feel free to continue to insult me. However that isn't going to obtain for your daughter possible potential resource(s), now is it. Good luck to you in finding all the help you both really need.
Stylegrl, I would think if you were feeling well, there would be no reason to lash out at Ford. If anything, you would be here helping her out ...not condemning her daughter because she is having trouble getting the right treatment. So share your knowledge if there truly is any??
SR, is that her former nic? I don't post on that forum, so I still don't know why she would take the trouble to read all of my old posts when I have never even heard of her and assume she has never heard of me.
Yes, and she usually is a rather interesting, nice poster. She once put up a photo of herself and she is quite beautiful. It surprises me that she wrote this but I recognized her immediately. I think her approach to illness is one that works for her....but not all of us.
The only thing I can think of is she believes in tough love. She wants your daughter to take the bull by its horns and don't give up finding help. However, when someone is very sick, that is extremely difficult because if you can't move (been there myself) it is taxing on an already immune suppressed system.
Perhaps, if she had just re-worded what she posted it would have been helpful. But all I saw this morning was a judgment call and it came off being unkind.
I really don't care about her, SR. I'm glad to hear she is sometimes nice.
The thing is my daughter has been totally active in determining what is wrong with her and seeking treatment. She has researched every day for two years, she has seen at least five different doctors, she at first thought she had mercury poisoning from her fillings and spent $10,000 having one-half of the mercury in her mouth removed and replaced, which just made her sicker. She then dug deeper and realized while there can be a connection to mercury poisoning (and other metals) to Lyme, that it was the Lyme that was the main offender. She finally received the right testing.
She tried to continue working and just got sicker and sicker. She's been called every negative name in the book, too lazy to work (she worked and loved it for 30 years), drama queen, hypochondriac, bad mother, crazy, psycho, nervous breakdown, taking the word of "quacks," and on and on. One doctor recommended institutionalization. Yet she still pursued help. She finally found it with these two docs, a naturopath and a Lyme specialist who also is an MD. They have brought her a modicum of improvement, but her Lyme is long standing (35 years since she was a teenager) and the various bacterium have invaded her entire body, most of all her brain and nervous system.
This is not a simple tick bite, Lyme diagnosis, get three weeks of antibiotics, and one is fine situation. And to see her taken down as a loser is hurtful when entirely the opposite is true. She's been so strong, never one to lie down and cry "woe is me."
Formerly Ford1224
We must always take sides. Neutrality helps the oppressor, never the victim. Silence encourages the tormentor, never the tormented. Elie Wiesel 1986
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