Support Groups

[Cindy Casey]

Thank you Milly for the warm welcome! Good to see you here too!

Cindy

[jonsi]

I hope chocket checks in before Cindy leaves for California so they can swap info.

Hi CindyC, I didn't know you were a newbie here! (I thought you had been on this forum for a long time.) Sometimes we get along about as well a house full of sisters and brothers with only one bathroom. "My turn, who didn't flush the toilet" Most of the time we are very polite and considerate, like me We have different theories, suggestions and treatment advice and sometimes it gets kinda hot in the kitchen. If it gets too hot, someone opens the door and fresh air comes in and we become family again. So welcome, Sister!

In the white light,
~jonsi

[chocket]

Hi Folks,
When I finally decided to accept the fact that I had Morgellon's and proactively sought out help in this matter, I immediately realized that this ailment we call Morgellon's, carried with it sterotype profiling. It soon became apparent that the doctors had already read my records, and were basing their information on previous notes, rather than really trying to get to the root cause of the problem. My dermatologist has at least accepted my suggestion we try topical cream Permethrin, and she prescribed for me anti-Dermodex Invemectin medicine.

4 years ago when this started and I had surgery done on my 1st lesion, I asked my surgeon, if he had heard of the Demodex mite. The reason for asking was that another lesion started within a day after surgery, and a couple days after having my stitches removed, I noticed a fiber coming out, and literally pulled it out of the stitched area. Yes, I called their office and asked if they could have forgotten a stitch. Their reply was no, also the fiber wasn't the same texture or color. At my follow up appt. I told my surgeon that I felt that their was something under the skin, due to another lesion, and had been told of the Dermodex mite that could cause skin reactions. Dr Shi looked at me and told me he had never heard of it, and that perhaps I should see Psychiatry.

I was astonished when my Dermatologist tells me a week ago, that we could try some medicine that deals with a skin parasite called Dermodex. My reaction could have been to tear this woman's hair out or laugh outloud. (I mean after all, It wasn't her, who had told me that there was no such thing, and that I should see Psychiatry.)

After they announced that Kaiser/CDC had chosen Northern California for their clinical trial research, I was again astonished to find out that the Bay area represented a large number of recorded cases of "unknown dermopathy". Where was everyone? It seemed like the Medical industry had done their job in keeping the people divided and conquered. By using tactics that promoted fear and self-esteem issues. Once normal people who had lead active lives were now so homebound, that it bordered Agoraphobia. In fact, I had a response sent to me when I first started advertising and seeking others, which said it all.

'many of us morgies are still private treating ourselves cause of fear of being contagious ,'

this person chose to support her cause by donating to the MRF. I congratulate her on at least looking at the internet boards and keeping up on the latest information, as well as her donation efforts. Yet, her words,however, echoed many others thoughts. How many more were out there afraid to go out in public. Even if this is contagious, which, fortuntely in my case it has not been, why be afraid of meeting like people sharing the same symptoms of the disease?

Because we have been battered.Wikipedia

Battered person syndrome is a physical and psychological condition that is classified as ICD-9 code 995.81 "Battered person syndrome" NEC or otherwise included within DSM-IV as a sub-category of post-traumatic stress disorder....The condition explains why abused people often do not seek assistance from others, fight their abuser, or leave the abusive situation. Sufferers have low self-esteem, and often believe that the abuse is their fault"

I, too, am not the same woman I was for the first 40 years of my life. I have become a recluse. I do my shopping at night so that I won't see anyone I know and have to either explain why I have sores on my face, or be distracted while they stare at them. I have not dated in 4 years, though that might be good thing It is a struggle everyday to go to work and face my students. They are a bit more forgiving and don't really care. Some have even been sympathetic. I really believe in my heart that support groups that offer services in which Jonsi and Jo and others have outlined, will help us on all levels.

Sorry I didnt get to the forum until late. I live about 60 miles north of SF. It seems like everyone knows you on the board. We haven't been introduced, so please respond back when you can, or email me. Either way. You mentioned patients. You've peaked my curiosity.
Its time for bed, need my beauty sleep.
Carrie/chocket

[jonsi]

Support Group Meetings (ideas)

1. It is my thought that the group meeting should start at a given time, but make arrival time open. I have a hard time going places because deadlines are so stressful. "Be there by x:xx time" causes me great anxiety.

Meeting should be informal rotating between personal introduction and paperwork(#'s 2 & 3 below). Two people should be running the meeting to do this. This allows morgies to arrive late (ouch :P ) and still feel included.

2. Have a question/answer paper they can complete. This is a faster way to go over symptoms and "acknowledge"/verify that the person has Morgellons.

3. Talk with each morgie individually and meet the people that have come along with the morgie to offer support.

4. Treatment steps, what is working, not working. Personal testimonies from old members.

5. Care packages

6. Buddy system, sharing phone numbers

7. Updates on CDC (tongue in cheek)

8. prayer/meditation in closing. Make sure we all leave with hope and knowledge we will get through this!

9.

10.


Gotta go get ready for work. Feedback, additions, deletions on this agenda please help!

In the white light,
~jonsi

[Jo]

Hi folks,

Here's some more planning ideas to consider, especially relevant to groups with complex health conditions, like morgellons:

- choice of support group location (geography and setting)
- facilitation (facilitator may need co-facilitator to help with logistics and support)
- health and safety etc (emergency procedures, security)
- accessibility (wheelchairs, accessible toilet, seating, refreshments)
- group trust (verbal agreement of mutual confidentially)
- getting clients to and from the group (volunteers)

Jo xxx

[Cindy Casey]

I like all the input on Support Groups. They are very much needed in every area of the US.
I will return to properly introduce myself to you, Carrie. Honestly, right now I am so stressed due to the recent loss of my husband and more recently, the loss of my father. Just briefly, I am a Registered Nurse with Morgellons Disease and Director of The New Morgellons Order / the Charles E. Holman Foundation. I volunteer in the office of Ginger Savely, NP and Raphael Stricker working with Morgellons patients. I will be out of town all next week and extremely busy with Morgellons patients in SF. I won't have the opportunity to frequently check email or message boards during that time.

I would like to get to know you and work with you on Bay Area Support for Morgellons. I am aware of BAMSAC (Bay Area Morgellons Support and Communication) but I will check in to find out the status of that group as soon as I can.

I appreciate all that you are doing for the Morgellons cause.

Until I can properly introduce myself, please check out our website at:

http://www.TheNMO.org

If you click on "Cindy's Diary" you can see my story as a critical care nurse with Morgellons. Our organization's mission is to fund Morgellons research, educate the medical community, promote recognition, and provide support to those patients suffering with Morgellons Disease.

Thanks again,

Cindy
ccaseyrn@hughes.net

[chocket]

Boy do I feel dumb! ??? I recognized Cindy's name after I sent out the post originally! It was wonderful to have Cindy welcomed with such warm responses from everyone. Being a newbie, I'm still learning who everyone is and any news that is out there. Though I have been actively reading about what is going on in the Morgellons Community, and am aware of events, relating names and events is a memory process.

Memory being the key word, given that I have that 'brainfog' and 'slight memory loss' from this dreaded ailment.

I've sent Cindy and email, introducing myself, however I wanted to put this out to the group. Does anyone know how to reach the Board of Directors at the MRF, and who would be the key person to talk with in regards to having the MRF open their non-profit status to allow Chapters?

Though I agree with Jonsi, that we can't wait, this has to be a 'grassroots' effort. I would like to work with MRF in getting this started. In fact, if anyone is interested, I believe we should have a committee to meet with or at least contact MRF, to get this going. Since the CDC and the news announcements we have seen the amount of people coming forward double.

Folks what we are looking at is similar to how the AIDS news evolved. We are just beginning to see how far spread this disease is and we need to have the infra-structure to support these people. Similar to most situations, until someone who has clout ie: celebrity, $$... become infected or someone close to them becomes infected with Morgellons, will we see real wide-spread support. Similar to how Elizabeth Taylor helped the AIDS cause when Rock Hudson died.

So I propose concurrently, while getting the support groups started and assisted in their endeavors, we could be working with MRF to associate those support groups interested, in becoming a Chapter.

Is anyone interested in this idea? Should I post this as a new post idea? Franky and all the other moderators, what do you think?

Thanks, Carrie

[jonsi]

Many things to address, yes Jo!

I welcome any input from NMO and MDR. This would be so helpful, but I'm not going to wait for months and months for these organizations to maybe get involved.

As I've said before I'm a mountain girl, a hippie in heart and fashion, and a non-conformance. If need be, I'll just go ahead and do it. I'll share the agenda and won't need any recognition. Jo, preserving our integrity and remaining anonymous is very important. That hadn't crossed my mind. I think I can probably get an attorney friend to give some free advice on legal issues.

I do have a lot of volunteer experience with the American Red Cross (HIV/AIDS education), chair-wo-man of high school reunions (graduating class size of 520), habitat for humanity, various fund raisers, Jerry Lewis carnivals for MD....

If I screw up on a support group issue, maybe they'll put my mug-shot on the front page of the newspaper. That would at least draw more recognition to Morgellons than anything done so far in my area!

Thanks for more ideas and info.

Itwl,
~jonsi

[jonsi]

Hi everyone,

I hope I'm misunderstanding something in that I should wait for approval from NMO and MRF? I'm sooo confused ???

I'll give up if I have to wait too long. Heck, I got through this Morgs sh** for 5 years on my own. Can't everyone else survive this long without a computer and access to the internet? I live in USA, but in a part of New Mexico where most speak Spanish. 30% of the population are native New Mexican. 30% are native American Indian.

Santa Fe is only a 30 minute drive away, but my city and Santa Fe are not demographically the same as the rest of the state. This is a welfare state and i don't think the doc's are going to be looking for Morgellons for a long time. Julia Roberts, Val Kilmore, Carol Burnette and many "stars" live in this area. Elizabeth Taylor's son used to?/still?? This is the place to live if you want to get away from the fast pace of the rest of the world.

My mom has been on the computer a lot longer than I and in 6/06 she's the one who found out what Morgellons was. Just a little over a year ago she found dsp cream for me to try and I thank God for my mom!

So, where are the organizations going with support in rural America? That is my question and I hope if they want to help we won't have to go beaurocratic bs to get something accomplished.

I don't want to make anyone mad, I know we are all frustrated. Please understand.

In the white light,
~jonsi

[chocket]

Hi Jonsi,
Sorry about the confusion. I also, want to pull from you some more info. You mentioned you have done work with several other organizations. So definitely we could utilize your knowledge.

The reason why I brought up the umbrella/chapter part of being part of an existing Organization, is because I want to legitimize the Sonoma County Morgellons Support Group. In order to legitimize the group it would have to be filed tax wise as a non-profit organization, which in turn costs money. The money is upwards of about $300.00.

Of course, membership would include anyone/everyone. Its just based in Sonoma County. I understand you live in New Mexico, so your membership would be obviously long distance, however, you did mention you would love to travel to California. Of course, you'd be welcome to stay with me while you visited the Northern part of the state.

In the meantime,(struggling with fatigue myself), I totally understand about committing to specific dates and appointments. Is that part of this disease or is just me? Also, I've never spearheaded an endeavor of this magnitude. When I posted this, I really thought that there were other support groups out there. Its become evident that support groups are needed everywhere, and I feel thats a crime. Darn it I'm tempted to go to Kaiser and put up a community announcement, if they have a bulletin board.

I hope this helps clear it up about the desire to get this organized under a situated organization. It helps authenticate the group legally and professionally.

Good night
Carrie