From: Ariyele Ressler <arressler@...>
Subject: Re: [CEFSFB] Complete Recovery? And Walking/Phone Buddy Needed
To: CEFSFB@yahoogroups.com
Date: Wednesday, June 24, 2009, 7:30 PM

hello to all!

thank you so much for writing! i do know how hard it can be to muster the energy to respond to emails, phone calls etc, so your being able to write this note means so much to me. i started to cry when i read it. i've been feeling so incredibly alone in this process and to read your positive, supportive, encouraging, welcoming, and hopeful words meant so much to me. truly, thank you.

franky, i am sorry to hear that you've had a rough couple of weeks. wow, do i know what that's like! how are you feeling these days? how long have you been sick? where were you living and traveling before you became sick? what are your interests?

i too have been feeling really ill for the past 7 weeks with what feels like a viral infection (sore throat, swollen glands, headache, fatigue etc) and have been completely laid out. i am doing the SHINE protocol and reference dr. teitelbaum's book like a bible (from fatigued to fantastic). i've had two visits with a specialist who focuses on this particular protocol but my second visit was a disaster. i'm now back to square one with trying to find a new phsycian to help me and feeling new lows of discouragement.

i relate to what you were saying franky about how long you lived your life with your illness. before i became disabled from it, i was working with youth in the child welfare system in a really intense environment. after every day (which albeit, some were more than 14 hours long!) i basically had zero energy and needed to go to sleep at 7pm or 8pm each evening---almost every weekend i needed to forgo invitations with friends because i was too tired or sick (and i was always sick!) during the two years i worked in this capacity,  i saw my doctor many times and said that i thought something was wrong with my immune system. he said i wasn't used to california germs because i was from the east coast. he said i had a stressful job. he said it was because i was working in a hospital. my blood work was normal. i just kept going. until one day, my body said, UP NO MORE! being where i am today having learned so much about this disease, i see now that it was always my cfids, but i was able to live my life (minimally) and function at work with not much else left. i fear that i may not be able to return to the work i was doing before because it was so incredibly intense and stressful.

i have experienced so much loss from this disease that it is painful to think about.

i also relate to what you shared about your partner...my relationship has gone through the same trials with the same outlines. my partner still struggles with my limitations and tries to find the balance between feeling his own feelings of disappointment, sadness, anger, and helplessness and taking care of me and supporting me. we sometimes need to remind ourselves that we are not each others' enemy and are fighting the same antagonist: cfids.

i am a deeply spiritual person and on my path to healing i've worked actively on the spiritual components of this illness alongside the physical and emotional. i beileve that everything happens for a reason. in my moments of despair i lose the compass with this tenet and drift out towards hopelessness and fear. i began to fear that i would never get better and the more discussion boards i read the more i was seeing that everyone is seeking the same things: to find the best doctor to help them, to know what works and what doesn't, to heal!  it was in my lowest moments (recently) that i realized i needed to find other people and connect with community. i'm so grateful to have found good people. i can't wait to meet you all.

thank you for your advocay. i share your passion for helping people (previously that has taken the shape of social work but who knows how that will shift...) and i have felt tremendously uplifted from this one note alone. i look forward to checking out your blogs etc and even more so to meeting you.

with love and light,

~ariyele

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From: franky dreamer <frankydreamer@ yahoo.com>
To: CEFSFB@yahoogroups. com
Sent: Monday, June 22, 2009 10:08:27 PM
Subject: Re: [CEFSFB] Complete Recovery? And Walking/Phone Buddy Needed

Hello Ariyele,

I can soooo relate to many of your challenges and interests. My name is Franky Dolan and I am now completely housebound, just turned 31. I have been up and down throughout the years and have traveled to other countries and studied and lived great romances even, all while being sick. Though I am in a major down-slope now, I remind myself that it is possible that we can really "live" again!! We can.

I do a lot of advocacy work from my home and I hear from people all over the world actually. I had one person contact me recently just to tell me that she has completely recovered from chronic Lyme Disease. (Chronic Lyme Disease mirrors the symptoms and circumstances of CFS) I have heard of other people saying that they have recovered CFS at least 90% as well. I know a woman personally who says that she is at least 90% cured. She participated in the Valcyte (antiviral med) trial at Stanford. I have heard people having success with the SHINE Protocol as well.

I am richly spiritual as you seem to be too. My partner has been very supportive too, but it has put strains on the relationship as well. We are in a very healthy position in our relationship, but it has taken some serious delicate and raw honesty. We both give to the relationship in our ways, equally overall. It works for us. It has evolved from him feeling scared or overwhelmed on how to help me, to a point of him being empowered and heroic in helping me when I need it.

I have been pretty darn sick for the last couple of weeks, but I was able to push forward and write a note to you (and everyone else) .. :-)

This is a beautifully supportive group! The people here are safe, supportive and honest. That is just what we all need.

I hope that this gives you comfort, Ariyele, our new friend. I will give you a few of my website below. I have worked so hard to help people --including myself-- to be less lonely...

I started a website for people living with Invisible Diseases, if you would like to see it:
www.InvisibleDiseas es.com

The Invisible Diseases facebook support group:
http://www.facebook .com/group. php?gid=67434616 607&ref=mf

My art blog is:
www.frankydreamer. wordpress. com


Warmest of love and friendship to all,

Franky :-)

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From: Sharon R P <hosnar@hotmail. com>
To: CEFSFB Yahoo <cefsfb@yahoogroups. com>
Sent: Monday, June 22, 2009 8:52:35 PM
Subject: [CEFSFB] Complete Recovery? And Walking/Phone Buddy Needed

Please welcome newcomer Ariyele.  She has a question and a request...
 
"has anyone ever heard of someone healing completely from this illness? i am also open to walking buddy, a phone buddy, and any support that is out there."
 
Welcome to the group Ariyele!!
 
Sharon

1) my name is ariyele.

2) i am 26 going on 27 years old

3) i have chronic fatigue immune dysfunction syndrome and hypothyroidism

4) i am the person with the illness but i have many friends and family that need support too

5) female

6) i live in oakland

7) caucasian

8) my orientation is humanist/my behavior reflects being straight (most of the time) and i identify with queerness

9) my functionality varies greatly; most of the time i can get out for a few days but with minimal activity (walking to the store and back is all i got) often i cannot cook or clean for myself, i am unable to work. 

10) a question i have for the group is: has anyone ever heard of someone healing completely from this illness? i am also open to walking buddy, a phone buddy, and any support that is out there.

11) wow! i have so many interests that it pains me to list them all because this illness has taken away my ability to indulge them...making jewelry, reading tarot cards and studying mysticism, writing, reading, social welfare, specifically permanency work with you in foster care, outdoor sports (kayaking, surfing, snowboarding) , running, swimming, cooking, eating, and on and on

12) i have been so alone and isolated in the experience of this illness aside from the support of my caring and devoted partner. my being sick has put a severe strain on our relationship in many ways, and i am needing support from people who are actually living this or a similar experience. i've begun to lose hope and this was my sign that i needed to reach out. thanks for being open! 

Thanks for your interest in the group.  I'd like to introduce you to the list and make sure that you're not a spammer.  Please answer the following questions.  The ones w/ stars are mandatory.  All of your answers, except the first one, will be forwarded to the group.  Feel free to use a pseudonym to protect your anonymity.

*How did you come to learn about this group?  

*1) Name
*2) Age
*3) What medical conditions do you have, or think you may have?  
*4)Are you the friend or family of someone w/ one of these illnesses?  
*5) Male/female
6) Town or City you live in
7) Ethnicity
8) Sexual orientation/ Gender Identity (I ask this question bc/ many gay, lesbian, and transgendered people w/ these illnesses have expressed that they feel more comfortable in groups like this, if they know that there are others like them in it.  I am a lesbian.)
9) Level of functionality - i.e. homebound - unable to cook or clean for self, able to get out a few days in a week, work part-time, work full-time
10) Questions you have for the group i.e. "does anyone have a good rheumatologists who knows how to treat FM," "does anyone have a good Kaiser doctor," "would anyone like a walking buddy," "would anyone like a phone buddy"
11) Interests you have that have nothing to do w/ your illness(es)
12) Anything else you want to say about yourself.
  
We appreciate the interest of healthcare providers, but they are not allowed to join this list unless they have one of these illnesses and are joining for personal reasons.  But we are glad to forward your info to the group.  If you would like to make your services known to the people on the list, email your info toCEFSFB-owner@ yahoogroups. com, and it will be forwarded to the group.  You may do this once a year.  

Sharon
Group list owner

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