Do you want to do later? I misunderstood the time you are available. You are four hours earlier?
3 hours earlier than eastern time. so if you do 11am eastern it is 8am for me.
And the secret to note taking ladies . . . .put your phone on speaker or Bluetooth and type the notes . . . lol, that is how I do it. Much easier for me to type and faster.
It sounds like the earlier time may work better for you, if you need to warm up the cattle prod to get your daughter out of bed (:-). Let’s split the difference and start at 7:30?
Thank you for volunteering to take notes. I’m nearing my infusion day and can’t get my left wrist to work, so this is a big help. If we run over time, I’ll take hand written notes and, later, type them up on Dragon. I know I owe you and agenda. I promise I’ll get it done today.
We will be getting a gmail account for the Mod Squad. The nice thing about this is when we start doing a lot of word documents, we can store them there so that everyone can access them easily and in Word format. Helps with editing. We will talk about it quickly in the call.
7:30am works fine for me, pacific. And yes, my 10 year old often needs a cattle prod to get up . . . lol. Once the weather here turns cooler, I usually just yank the blankets off the bed which helps . . My child is a total night owl and not a morning person at all. Claire, I hope you feel better soon, wrist problems suck. I have a lot of problems with my wrists from the Fibro but right now they are doing relatively ok luckily.
Call Agenda:
FMS Mod Squad Call
10/18/14 at 10:30 est.
Introductions (15 min)
Please say your full name, location, and tell us a little about your strengths in terms of things that would apply well to the new guide, and moderating the site. Try to keep it to about two minutes.
Michele
Michelle
Madere
Luci
Laurie
Claire
FMS guide introduction (10min)
Purpose, and start date
Site Layout change (with rationale & brief discussion)
Notifying mbrs of layout change
Review topics list and assign topics. Please post any additional topic ideas prior to call. (30 min)
Topics list
Intro to FMS (Claire)
First appointment (Claire)
Diagnosing FMS (Claire)
Treating FMS
FMS action plan (form) - Claire
Symptom diary (form) - Claire
Medications
- Overview of med therapy. Use these references: http://www.ncbi.nlm.nih.gov/books/NBK55552/, http://www.webmd.com/fibromyalgia/features/treating-fibromyalgia-pa…
-By Class (skeletal muscle relaxants, SSRI, SNRI, SSNRI,tricyclics, anti-epileptics, anti-Parkinson’s, NSAIDs, Tylenol, opiates)
OR
- Pick most commonly used drugs and any new drugs first
- use brand name with generic in parenthesis after for title
- begin with these drugs- Savella, Lyrica, cymbalta, gabapentin, amitriptyline, trazadone, flexeril, Paxil
-opiates - encourage pain management, reserving for flares, and other methods first
For meds include info from references and common knowledge, such as side effects can go away over time, often after 3-6 weeks., and trazadone is an antidepressant, but is often used to help with sleep in FMS patients.
Exercise- yoga, tai-chi, walking, water classes, exercise classes for people with arthritis, some doctors offices offer classes too, physical therapy (land and aquatic)
Dealing with the emotional effects of chronic illness
Alternative therapies
Review appropriate references (NIH, Mayo, ACR, Medscape, Medline, MedlinePlus, drug fact sheets from the manufacturer, webmd)
*topics with my name noted have already been started or completed.
Roll-out Timeline & Gmail account (5 min)
This looks like a comprehensive agenda. I look forward to clarification and discussions. Thanks for putting this all together Claire. Have a great day ladies. Hugs.
Thanks Claire, you have put a tremendous amount of work into this and I appreciate it. I would like to suggest adding a section on Insomnia / Sleep Disturbances and tools to assist with that and a section on talking to others about chronic illness (i.e. spoon theory, the recent article posted here, other tips like not feeling guilty, etc). I also really like the section you all have on the PsA site to discuss how to file for disability, that is something that comes up here a lot. Maybe that info can be added at a later date.
Also, under the emotional effects of chronic illness, were you thinking of things like Depression, anxiety? I just wanted to verify as those are very important topics for FMS in my opinion.
I was think more about coping in general for newbies who have been recently diagnosed. Dealing with grief, life changes, etc… I agree that addressing depression and anxiety are important for any chronic illness, but there does seem to be more of it with FMS. I don’t know that there needs to be separate sections for each, but maybe a single section on dealing with depression and anxiety, under the main heading of “Emotional Wellness”. They are often coexisting the treatments are similar, and so are some of the meds. Maybe encouraging people to get care and what that should look like would be most beneficial?
Emotional Wellness
- Coping with grief
- The New Normal
- Managing with Depression and Anxiety
Sleep! I knew I would forget one. Yes, it’s important. The recent article posted was very good. Here, too, we could end up with a number of sections, but it’s easier for others to get to if we keep it simple. Include some of the sleep medications under the meds tab, add sleep hygiene tips and benefits as it’s own article and include handy links at the bottom?
Yes, that sounds good. I also think we should add a "tips to dealing with FMS" section, maybe something like this:
Tips to dealing with FMS
- Here we would post a handy 1 page list of tips such as using a cane when needed, sitting on a stool to cook, etc - there are a lot of good tips in discussions we can pull from plus the literature
- How to talk to someone about chronic illness (spoon theory reference, etc)
- How to advocate with your doctor (unless this info is contained in another section)
- Member experiences or quotes - maybe this is where we can highlight long term members who have good advice (briefly, no more than 1 paragraph, ideally more like 2-3 sentences from a few members is what my suggestion would be).
Anyway I think those would be good to add as well. Thoughts all?
These are good materials, but let’s wait too see what isn’t covered in the other portions? Also, I’d like to roll out different sections over time, so let’s prioritize the topics on the call. I have an IV in right now. Will do better later
Are we using the conference line? Can someone post the number and access code for me please if so? Thanks.
I think Madere has had to drive her son back to school unexpectedly due to a train worker strike. I may not have a number and may have to make a conference call on my phone. Is everyone’s number already posted under the mod numbers discussion?
I just posted mine. For moderators only please.
Hi, Claire. Thank you for putting together this agenda. I wasn't sure which discussion on mod numbers you were referring to, so I am posting my number here for you, 603-■■■■■■■■.
Thanks,
Laurie
I am at the hospital with mom what ever u want me to do is fine let me no I want be on the call
My number is 204 831 0956. Hope your mom gets the care she needs at the hospital, Luci, sending you hugs. Looking forward to chatting in a bit with you all. Hugs, Mic
I hope your mom is better quickly Luci. Sending positive thoughts your way and we will miss you on the call. Hugs. Michelle
My number is 916-■■■■■■■■ just so it is easy for you to access. Talk to you all soon.
Luci, I’m so sorry to hear about your mom. Take good care of the both of you, and don’t worry about anything here. I’ll be happy to let you know the details of the call whenever you are ready. I’ll be thinking of you both and let me know if there is anything I can do.
Luci, sorry to hear about your Mom. Thinking of you here.
Laurie