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.
Blogs & Forums
Forums
Blogs
