Date:   11/22/2013 8:23:37 PM ( 11 y ago)
Hits:   591
URL:   https://www.curezone.org/forums/fm.asp?i=2126593

I just wrote this and am considering posting it to my wall on facebook. I'm sharing with you guys for several reasons. 1. To get feedback and 2. In case any of you would like to make a group like this for yourself. You are welcome to copy, paste and adapt it to suite your needs if you like:


I'm hoping to organize a group of friends to support me in this matter: A Friend Crisis Care Network (in case I ever go into crisis again).

I was feeling pretty terrible for the past few days on account of some minor events involving parents who, while doing their best, simply cannot remember that, as someone with adrenal fatigue, I have to eat on a schedule and I have to get sleep. It is reminding me of the fact that, while some elements of my health have been improving drastically, my adrenal fatigue is still there, needs careful care and can potentially send me into a crash/crisis with very little warning. Once in a crash, I can potentially loose months/years of healing overnight. I've watched this happen. It's devastating and terrifying and I basically start over from ground zero.

Of course, I'm doing my very best to continue to improve in health but, I feel it necessary to have a back up plan where easy communication with you all is made possible via Facebook. I spent an entire year wondering how to let you know that I needed your help. I'd prefer to have a solid action plan in place so that this doesn't happen again.

Would you like to be in my Friend Crisis Care Network? I'm looking for the following (in the event of another severe health crisis):

1. If needed, people to come to my house to help in a variety of tasks (possibly washing dishes, grocery shopping, sitting quietly with me, helping me get ready for bed). My parents do not like to ask for help, even when things are dire. Thus, people in this group might have to be gently persuasive with my parents about helping.
2. An intelligent person with excellent notetaking skills, a strong memory, patience and problem solving skills to come over and take notes from me about what my needs are so that I don't have to repeat myself over and over while very weak and in a crisis. (My parents are unable to do this and often have a lot of trouble organizing and remembering important information.) Best case scenario, this is someone with some understanding of natural healing in case I need the person to take notes for a doctor's visit or to do research for me online.
3. If necessary, people to extricate me and move me to Atlanta. (My parents have simply not been able to handle my care (they are elderly and disabled as well) to the degree that was needed when things have gotten dire. Also, I have not been able to find a single doctor here in Ormond that I trust with my care. I think Atlanta is a much more appropriate option. Also, because mainstream western medicine does not believe in adrenal fatigue, they are extremely poorly suited to handle someone like me. (Somehow they believe that all other endochrine organs can become over and under functioning in a range of degrees, except for the adrenals, the organ that is most responsible for handling stress. Endocrinologists believe that the adrenals are either ON (fine) or OFF (Addison's disease). This is a travesty and goes against the common sense of anyone with a brain)... Thus, I have to have care from integrative, holistic doctors and/or naturopathic doctors. They can be MD's but they must be the above as well and well versed in adrenal fatigue, HPA (hypothalamus-pituitary-adrenal) axis dysfunction and/or hormonally rooted chronic fatigue syndrome.
4. Potential options for kind, patient and loving caretakers/a safe home to stay in while I recover in Atlanta. (I know this is a massive amount to ask of anyone, but I prefer to ask now, while I'm capable of asking, rather than waiting until a potential future day that I'm desperate and too sick to ask).
5. A group of friends in Atlanta to help this caretaker with necessary needs.
6. People to crowd fund for me so that food, supplements, caretakers, medical needs, etc can be payed for. Also, as an aside regarding money, I have a disability hearing in A few months, but the outcome remains to be seen.

I'm going to start a Facebook group for anyone who is interested in being on my (just in case) 911 crisis team. I hope that I will continue to improve and not have to ever use this crisis team, but I feel that its extremely important to do my best now to have a back up plan, just in case the shit hits the fan again.

If you decide to join this group, please be aware of some essential concepts for how to handle me when severely ill:
1. While in an adrenal crisis, any kind of physical and /or emotional stress can greatly exacerbate the situation and severely elongate the recovery time.
2. This is the most important lesson that I've learned through all of this: If I push my limits, I pay. Same goes for other people pushing. Unfortunately, if I allow you to push my limits, I pay as well. Please try to be aware of this.
3. Sound, motion, light (sensory stimulus) needs to be kept at a minimum as much as possible. Please whisper and be gentle with me.
4. Food needs to be readily available and non toxic. The adrenals make cortisol, whose primary purpose is to act in opposition to insulin, to stop blood Sugar from dropping. Thus, if I am hungry, I need to be fed quickly, so as not to further tax my adrenals.
5. If I am not talking or moving but you are speaking to me, I am not asleep, I am in a crash and simply cannot move. Please do not try to force me to speak.

In the event that I go into a health crisis in which I'm in need of help, my goal is to simply be able to ask my mom to call someone from the group to inform the rest of the Facebook group that I'm in 911, that I need help and then hopefully, if possible, the specific help that is needed will be organized in a way that is effective and efficient. As a side note, I've called the real 911 and was astounded to hear from a nurse there that "Going to the emergency room is only useful for people with heart attacks, strokes and gun shot wounds." They told me to go see my primary care physician (after I had been bedridden and paralyzed for six months). The thing is, the primary care physician told us to call 911 and would not see me. Everyone was passing the buck. Unfortunately, these people simply cannot be relied upon for the kind of care that I need and desire.

Thank you so much, my dearest friends, for helping me to feel supported and as safe as possible in regards to the potential of this happening. I love you and thank you with my deepest, most sincere gratitude.

Please let me know if you are able and willing to join this effort.

 

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