This topic is inspired today by 'interesting timing'. While I was out thanking the neighbor who shoveled my snow and going on to shovel some other snow for the area people, I explained how it is I'm able to be doing things that I wasn't in the past. And I included the facts as to what my yearly expenses were in those days for my health care, as in a year I probably had over 20 medications/prescriptions going on most months. I returned to working and had a message from someone who was asking about Lumigrate being able to assist people with their medication expenses, which apparently wasn't intended by the writer to be posted for all and was intended to be a private message. Since it was obviously 'timely' and a GRATE question, I modified what the writer had written, removed the original comment and then established this area. I want to get people's input on this so have established THIS area for YOU to write in about this topic (remember you can have a username that allows you to keep your identity a mystery AND have another one that has your actual identifying name, etc if you want).
And then I'm goign to post it on facebook as if one person has asked, I would imagine it is a topic MORE are interested in. Thanks for bringing it up, I hope this is a way to handle this user's concerns appropriately and serves for us to start a dialogue that can make changes for people and at the least now, a place for people to share their thoughts and experiences as they want. (write, read, etc.) ~~ Thank you, Mardy
Live and Learn. Learn and Live Better! is my motto. I'm Mardy Ross, and I founded Lumigrate in 2008 after a career as an occupational therapist with a background in health education and environmental research program administration. Today I function as the desk clerk for short questions people have, as well as 'concierge' services offered for those who want a thorough exploration of their health history and direction to resources likely to progress their health according to their goals. Contact Us comes to me, so please do if you have questions or comments. Lumigrate is "Lighting the Path to Health and Well-Being" for increasing numbers of people. Follow us on social networking sites such as: Twitter: http://twitter.com/lumigrate [1] and Facebook. (There is my personal page and several Lumigrate pages. For those interested in "groovy" local education and networking for those uniquely talented LumiGRATE experts located in my own back yard, "LumiGRATE Groove of the Grand Valley" is a Facebook page to join. (Many who have joined are beyond our area but like to see the Groovy information! We not only have FUN, we are learning about other providers we can be referring patients to and 'wearing a groove' to each other's doors -- or websites/home offices!) By covering some of the things we do, including case examples, it reinforces the concepts at Lumigrate.com as well as making YOU feel that you're part of a community. Which you ARE at Lumigrate!
Links:
[1] http://twitter.com/lumigrate
[2] http://www.lumigrate.com/forum/finances-and-f-word-fibromyalgia#comment-302
[3] http://www.lumigrate.com/forum/finances-and-f-word-fibromyalgia#top
[4] http://www.lumigrate.com/user/login?destination=node/221%23comment-form
[5] http://www.lumigrate.com/user/register?destination=node/221%23comment-form
[6] http://www.lumigrate.com/forum/finances-and-f-word-fibromyalgia#comment-303
[7] http://www.lumigrate.com/forum/finances-and-f-word-fibromyalgia#comment-304
[8] http://www.lumigrate.com/forum/finances-and-f-word-fibromyalgia#comment-305
[9] http://www.lumigrate.com/forum/let-go-shameblame-game-better-health
[10] http://www.lumigrate.com/forum/finances-and-f-word-fibromyalgia#comment-394
[11] http://www.lumigrate.com/forum/finances-and-f-word-fibromyalgia#comment-401
[12] http://www.coupons.com
[13] http://www.couponbug.com
[14] http://www.lumigrate.com/forums/health-issuesdis-eases/fibromyalgia-chronic-pain-and-chronic-fatigueexhaustion/it-cant-hurt-o
[15] http://www.lumigrate.com/forum/finances-and-f-word-fibromyalgia#comment-404
[16] http://www.lumigrate.com/forum/let-go-shameblame-game-better-health#comment-403
[17] http://www.lumigrate.com/blog/conference-chronic-pain-and-fatigue-fibromyalgia-communicative-convergence-doctors-therapists-a
[18] http://marillacclinic.org/
[19] http://www.lumigrate.com/forum/finances-and-f-word-fibromyalgia#comment-405
Comments
Here is what I put as a modification over in the plain 'fibromyalgia' topic in this forum area as a response to ... well, read on ....
I have editing a comment after receiving an email through the website from the poster saying it was inadvertently 'flagged' and she was I guess trying to do a private message maybe. SO I'm going to very much edit it.
The comment was I think asking about Lumigrate loaning money for medications people cannot afford. The writer is a patient of a large, well known nation-wide fibromyalgia and chronic fatigue program/company. Between regular pharmaceuticals and compounded medications which insurance does not cover some of, the average costs are $1,100 to $1,200/month and leads to picking and chosing each month which meds to keep up on ordering and taking and some not based on 'which medication was most important'. "I do not take all the medications my doctor has prescribed for me." "I am wondering if this is slowing down my success in this treatment."
I'm going to go ahead and get this posted sooner than later and come back and respond more, as I do have thoughts and a response. Thanks for the coming to Lumigrate to ask this. Mardy
Live and Learn. Learn and Live Better! is my motto. I'm Mardy Ross, and I founded Lumigrate in 2008 after a career as an occupational therapist with a background in health education and environmental research program administration. Today I function as the desk clerk for short questions people have, as well as 'concierge' services offered for those who want a thorough exploration of their health history and direction to resources likely to progress their health according to their goals. Contact Us comes to me, so please do if you have questions or comments. Lumigrate is "Lighting the Path to Health and Well-Being" for increasing numbers of people. Follow us on social networking sites such as: Twitter: http://twitter.com/lumigrate [1] and Facebook. (There is my personal page and several Lumigrate pages. For those interested in "groovy" local education and networking for those uniquely talented LumiGRATE experts located in my own back yard, "LumiGRATE Groove of the Grand Valley" is a Facebook page to join. (Many who have joined are beyond our area but like to see the Groovy information! We not only have FUN, we are learning about other providers we can be referring patients to and 'wearing a groove' to each other's doors -- or websites/home offices!) By covering some of the things we do, including case examples, it reinforces the concepts at Lumigrate.com as well as making YOU feel that you're part of a community. Which you ARE at Lumigrate!
feel not alone. other problems restrict heeling... main wt. now 200. was ballett dancer all life 102 was ekk. years in bed... found tears ..discogram... core,,,, huge 45 have allways done yoga,afraid ..injurey.. on mop. patch 100 and other stuff including cymbalta.. just beginning to get out of bed .. please help. no where land.thank you .. meditation,chanting, but energy puff done.. how to 1---start--and move to higher goals? using streaches,,, laying down,, but unreallistic.. to strengthen core it takes all of my min.. swimming..out other injurys.. need anti gravity room.. sweet ..any ideas.. sit up time over. and out
I can totally understand where you are coming from. It SUCKS! I want to be normal again. On the other hand I am seeing some improvement but not much.
Have a great holiday
Debbie Breehl
I wrote this up about a month or two ago now, in preparing for what I thought was going to be a time for one or some or lots with chronic illness at the winter or holiday season. So for now I'll start with that and then certainly ask the other Grate Group Mates to come along when they have time and add to the discussion ... (and then please let others in your facebook groups, etc. know as well perhaps). Thank so much -- Mardy
www.lumigrate.com/forum/let-go-shameblame-game-better-health [9]
Live and Learn. Learn and Live Better! is my motto. I'm Mardy Ross, and I founded Lumigrate in 2008 after a career as an occupational therapist with a background in health education and environmental research program administration. Today I function as the desk clerk for short questions people have, as well as 'concierge' services offered for those who want a thorough exploration of their health history and direction to resources likely to progress their health according to their goals. Contact Us comes to me, so please do if you have questions or comments. Lumigrate is "Lighting the Path to Health and Well-Being" for increasing numbers of people. Follow us on social networking sites such as: Twitter: http://twitter.com/lumigrate [1] and Facebook. (There is my personal page and several Lumigrate pages. For those interested in "groovy" local education and networking for those uniquely talented LumiGRATE experts located in my own back yard, "LumiGRATE Groove of the Grand Valley" is a Facebook page to join. (Many who have joined are beyond our area but like to see the Groovy information! We not only have FUN, we are learning about other providers we can be referring patients to and 'wearing a groove' to each other's doors -- or websites/home offices!) By covering some of the things we do, including case examples, it reinforces the concepts at Lumigrate.com as well as making YOU feel that you're part of a community. Which you ARE at Lumigrate!
Well I sit and read about all these different treatments and can't afford any of them. Due to a bad divorce my alimony ended and since I was married to a man who refused to pay me a salary from the business we co owned I couldn't even get disability so I am on SSI which is not very much money. Being sick is bad enough but being sick with Fibro and single is a whole other story . So I can't even get massages and accupuncture let alone physical therapy and other treatments that would helpl. Anyone else in my situation> i feel terribly isolated and alone.
My dawlinks, the woe as me factor, though it may work on some, doesn't work with your Yenta. I love you all bubbelehs but touchus upton toch! (Butt off the table!) and get with the program. Many drug companies have means to assist you financially as do your doctors though they won't tell you this. Your local churches, temples, and other houses of worship are also most likely willing to help as are the "health clinics". Ellen showed me a website for a coupon for 75% off medications when you go to your local pharmacy, so try this:
www.coupons.com [12]
www.couponbug.com [13]
You can also get coupons for grocery shopping - who knew? A lot of pharmacies have "savings" cards (oy!) though I don't understand how these work but sign up! They're free, sign ME up!
Now, no more pity party kindeleh, you're not some weak little lamb out for the slaughter. No Rabbi is going to slit your throat and make you kosher (G-d forbid). Live your lfe as though tomorrow isn't going to come, and dance on top of the table (thank G-d Gary didn't get THAT picture on the cruise).
Pick up the phone, call your doctors, call your pharmacies - find out who makes your drugs and call them! I promise your life won't end if they say they won't help. Go on try it! It couldn't hurt!
Your
Yenta
Yenta Tellabenta is truly a 'creation' for outreach and education with Lumigrate.com through storytelling and reinforcement of key concepts related to body, mind, spirit. Written by a very talented and somewhat mysterious younger wise woman who found her way to Lumigrate the summer of 2009, we hope you enjoy having your own Yenta with us at Lumigrate! Yenta (meaning 'town gossip' or 'connector') has a dedicated Forum at Lumigrate at http://www.lumigrate.com/forums/health-issuesdis-eases/fibro... [14] and can also be found on facebook.
I'm a BIG FAN of Mary Poppins... my portfolio for OT school actually was based on Mary Poppins and the concept of 'home health' or how someone comes into your life and brings solutions and then goes. And somehow as I was reading this from Yenta, I was hearing Mary Poppins' accent!
When I think back to the times when things were really becoming very bleak for me financially in the first few years of my career as an OT and with fibromyalgia (which had coincided time-wise in my mid 30s), I realize that I would have benefitted from identifying a person or persons around me to help as my advocate. I didn't have a 'team' -- my family is one that is built upon your being independent and so I didn't have support from them and my multi-year, significant relationship that was to be life-long in our plan from when we met (pre-fibromyalgia) had ended (because of my health 'things'). As with zazu-in-boca, above, my life literally felt like the rug was pulled out from under it! One day I was being told 'all you need to do is pay off your student loans and credit card debt -- I'll even buy the replacement SUV since the one I want is going to be so expensive' (and then he was buying the land for our dream house we had drawn up and were finding builders to interview, and my salary as an OT would go to the house payment), and the next day I was having to move to a city I didn't want to live in and was six months from being able to work after graduation from internships. I held up through that and got an awesome paying job, but then the government came along with 'PPS' to save Medicare, and 50% of therapists were unemployed as therapists for a while after that! Salaries dropped, obviously, and it was devastating to my finances.
I was well enough then to take a job for a small company which utilized my degree/qualifications which I thought was important, though I did try to get back into project management in the then-hot high tech companies, but since my degree was in 'health care', my resume got pigeonholed and I wasn't even allowed into that side of the exhibition halls at career fairs! So I made $30,000 instead of my previous $45,000; when I made $45k I was paying off my credit cards at $1k/month and paying down the student loans as minimally as possible since they are very low interest. I'm by nature a good money manager, as anyone who knew me in my youth and young adulthood will tell you. (I had my first IRA at age 25, owned my first house at 26, had my first new and paid off car by age 28, zero credit card debt and 10 years in retirement with the State by age 30).
And ALL that changed when I became an OT. It was like watching a train wreck. I STILL every day think 'if I had just kept working at the job without having a college degree, everything would be FINE'. I would have had disability insurance and been able to become disabled when it was beyond appropriate for that. About age 40 (I'll be 50 soon), I was at that point, and somehow I found threads, or they found me ... ropes that were dangled that I chose to pull myself up onto and I ended up coming out of the overwhelmed place. I think I needed someone to show me something like what I wrote for the MANY people I hear on Lumigrate, which I learned about a year ago from Cheryl Young. (Link will be at the bottom of this post from me). "Sorry this happened to you" is what takes someone from the shame/blame/anger cycle to the acceptance and letting go. And if you read the "Your Story About Your Fibromyalgia" area of the Forums/ Fibromyalgia, you'll see many people who have gotten to that place of acceptance and embracing what they have from having fibromyalgia, despite all the hardships. "Everyone is where they are at." But if you're not where YOU want to be, look at the home page model on Lumigrate.com... YOU and the team around you, and figure out who you might need to be putting in place or removing.
If it's feeling impossible to do the steps that Yenta is suggesting, then it's likely you're needing to address some things medically, and in our 'integrative model' that is a combination of mind/ body/ spirit. Suggestion: Reading what Dr. Teitelbaum has said in Berkeley about depression versus the fatigue of fibromyalgia and chronic fatigue disorders is a suggestion (I wrote about a conference in July of 2009 in Berkeley). Reading lots of those blogs from that time is suggested, as well as other areas of the Forums here and follow leads and links. We'll also trust that more experts will come in and contribute here as well, and 'experts' doesn't have to mean you have degrees and initials after your name: some of the best therapists I know haven't even gone to kindergarden yet!
Also, I'm hoping there will be a building of resources from the 'wise ones' related to how to find help in communities. I'm going to put a link to the clinic in Grand Junction that is affiliated with our hospital. It is for people who do not have insurance and meet income qualifications. While you mostly do not live HERE, you might get ideas from their site as it is EXCELLENT.... so it might inspire you where YOU live to find similar programs or get ideas.
Link to Forum / Psychology related to the cycle that can suck people in with chronic illness: (and we hope MANY more experts come in and put in information here as we evolve and grow).
www.lumigrate.com/forum/let-go-shameblame-game-better-health#comment-403 [16]
Link to my blog post about the conference .. and I recommend people read the blogs for a couple of weeks after it, as there was a lot of local training for doctors related to pain that I attended as well:
www.lumigrate.com/blog/conference-chronic-pain-and-fatigue-fibromyalgia-communicative-convergence-doctors-therapists-a [17]
Link to the exemplary Marillac Clinic here in Grand Junction (as they have a good list of resources which might inspire people anywhere to know what to look up in THEIR area, at least): marillacclinic.org/ [18]
I'm really liking this discussion and the differing viewpoints -- and I look forward to seeing MORE from YOU if you'd like to contribute by writing.
~~ Mardy
Live and Learn. Learn and Live Better! is my motto. I'm Mardy Ross, and I founded Lumigrate in 2008 after a career as an occupational therapist with a background in health education and environmental research program administration. Today I function as the desk clerk for short questions people have, as well as 'concierge' services offered for those who want a thorough exploration of their health history and direction to resources likely to progress their health according to their goals. Contact Us comes to me, so please do if you have questions or comments. Lumigrate is "Lighting the Path to Health and Well-Being" for increasing numbers of people. Follow us on social networking sites such as: Twitter: http://twitter.com/lumigrate [1] and Facebook. (There is my personal page and several Lumigrate pages. For those interested in "groovy" local education and networking for those uniquely talented LumiGRATE experts located in my own back yard, "LumiGRATE Groove of the Grand Valley" is a Facebook page to join. (Many who have joined are beyond our area but like to see the Groovy information! We not only have FUN, we are learning about other providers we can be referring patients to and 'wearing a groove' to each other's doors -- or websites/home offices!) By covering some of the things we do, including case examples, it reinforces the concepts at Lumigrate.com as well as making YOU feel that you're part of a community. Which you ARE at Lumigrate!
I just reread this and wanted to particularly thank Zazu in Boca because since she mentioned acupuncture, massage, and PT and I have requests out to all those disciplines ... and really GRATE people I know here in Grand Junction ... to be getting some information into the Lumigrate.com Forums area, I'm going to provide them with the link to this section so they can see a really wonderful example of how this Forum area could be used for the purposes I'm tackling them about! And if anyone who is reading is a provider or knows of one they really respect and think would be honored to be suggested to write here, please let them know! Remember, the "Print" button yields really beautiful documents which you can hand off to providers, friends, coworkers or save for yourself as a momento or reminder of note! (though the tradeoff there is 'being green' but maybe it's worth it if it helps someone get to the forum area here to make it stronger and deeper and broader and better! ~~ Mardy
Live and Learn. Learn and Live Better! is my motto. I'm Mardy Ross, and I founded Lumigrate in 2008 after a career as an occupational therapist with a background in health education and environmental research program administration. Today I function as the desk clerk for short questions people have, as well as 'concierge' services offered for those who want a thorough exploration of their health history and direction to resources likely to progress their health according to their goals. Contact Us comes to me, so please do if you have questions or comments. Lumigrate is "Lighting the Path to Health and Well-Being" for increasing numbers of people. Follow us on social networking sites such as: Twitter: http://twitter.com/lumigrate [1] and Facebook. (There is my personal page and several Lumigrate pages. For those interested in "groovy" local education and networking for those uniquely talented LumiGRATE experts located in my own back yard, "LumiGRATE Groove of the Grand Valley" is a Facebook page to join. (Many who have joined are beyond our area but like to see the Groovy information! We not only have FUN, we are learning about other providers we can be referring patients to and 'wearing a groove' to each other's doors -- or websites/home offices!) By covering some of the things we do, including case examples, it reinforces the concepts at Lumigrate.com as well as making YOU feel that you're part of a community. Which you ARE at Lumigrate!