An Appeal for Help

[rabid1st]

Dear LJ friends;

Rain on Dust is back. http://rainondust.net/ But it isn't a happy place just now.

As you know, over the years I have struggled with the debilitating effects of fibromyalgia and sleep apnea. A little over a year ago, on May 5, 2009, I was sent home from my job because I could no longer work effectively. When an independent doctor confirmed my condition in July 2009, I was "involuntarily resigned." At that point, I was still in denial about the chronic nature of my illness. I hoped to find a doctor or a medicine, some treatment that could help me recover my full strength. I couldn't imagine not working. How would I survive?

However, I did believe I had insurance to cover my basic needs. And I was forced to resign myself to my limitations, because they refuse to go away. I applied immediately for short term disability insurance, of course. But money never came. I learned that my appeal was rolled to long term disability in August 2009 and was "being considered." I also applied for Social Security Disability. I an still in disability limbo. I have lawyers, paid for by my loved ones, and I am waiting for appeals. It could take two and a half more years before I can get a Social Security hearing. It is frightening how these people can stonewall the sick and destitute. I literally have no income and live now on the kindness and generosity of others. And so, I have resorted to this request for help.

Many of you have offered to help over this last year. One of you ignored my protests and paid for my doctor's visits and lawyers fees. You know who you are and I thank you so much. I held out as long as I could against making this mass appeal for donations, because I know times are hard for everyone. But the reality of our society is that we have no social safety net. And now, I do need some assistance.

If any of you can spare a dime...or a tenner...please visit my website (paid for by a dear friend) and I will happily shower you with good karma...or listen to your woes. And hopefully, I will have lots more to offer on the site in the future.

Rae
http://rainondust.net/

Comments

[hoegh.livejournal.com]

I'll keep my fingers crossed that your case will get processed quickly.

And I was wondering - and I hope you won't beat me up for my stupidity, I realize that any treatment will also cost money, and you've probably researched this high and low yourself, but - are you in any treatment for the sleep apnoea? As far as I know, almost all patients have a lot of relief with CPAP treatment. Just wondering.

And you know, I have little to contribute, and you owe nothing, but all that talk about shamanism got me all excited! If you ever feel up to it, I'd love to even just learn what my totem animal is... I have no idea. I kinda love all kinds of animals.

[rabid1st.livejournal.com]

No problem at all Hoegh, I will definitely ask my totem about yours.

As for CPAP, yes, I am under the care of sleep specialist. Unfortunately, CPAP or BiPAP only works for about 50 percent of the people...I am in the other 50 percent...the ones who need very expensive surgery. And, of course, my insurance doesn't cover it.

Rae

[hoegh.livejournal.com]

Thank you!

And sorry to hear that... I guess my info was too optimistic.

[susanb03.livejournal.com]

I know exactly where you are. Been there ourselves. Praying for you.

[rabid1st.livejournal.com]

I know you have, Susan. Thank you so much for your prayers. Also for the cheering links about David Tennant you send me. I appreciate your thoughtfulness and I hope we both have better days ahead of us.

Rae

[keswindhover.livejournal.com]

Well, I haven't had any foxes crossing my path recently, so no shamanistic hints for you.

I am sorry you are having such a crappy time healthwise, and having it compounded by a morally (and probably actually literally) bankrupt social support system.

Take care, and I'm here if you need me.

[rabid1st.livejournal.com]

I am still working on the housefly for you. Perhaps something to do with seeing what is coming and reacting quickly...only the lampshade may represent a block to that natural ability.

And you are, of course, one of my pillars of support. *leans on you.

Rae

[myemmie.livejournal.com]

Done. <3

Also, I'm not sure how I blatantly overlooked the part about shamanism (unless it's one of those things you don't really mention on this forum, in which case I don't feel quite so bad, lol...) but color me interested as well. I prefer to embrace all beliefs/religions/preferred terms as a journey to seek the D(d)ivine, and have found that whether I'm with my dear friends at Yule hailing Frigga at Sumble, or simply giving thanks as I sit in the sunshine, all is a balm to my soul.
I did read a book once, the memoir of a shaman, though iirc she was from a tribe in the western US. I found the concepts of the spirit wheel very interesting, though the only thing I've really retained from my experience with the book over the years was my need to occasionally smudge a small area with sage and zone out. I don't recall where my mind goes afterwards, but I sure do feel a lot better. :)

[rabid1st.livejournal.com]

The medicine wheel is a great tool for accessing your own spiritual path. Of course, shamanism is much more about guidance and attempting to align with the natural order of creation. It teaches us to observe and to open ourselves up to all aspects of the Divine. There is often a lot of judgment in human religions, both pagan and otherwise. Shamanism is more of an observational religion. Though, of course, many ancient shamans did make value judgments about signs and portents in the natural world. But then again, I am reminded of the elder who saved so many of his people during the great tsunami a few years ago. He saw the signs in the sea and moved everyone inland. Was that magic? Or simply paying attention to wisdom passed down and passed on from the natural world?

Sage is great for clearing the senses and your space. As you zone out, if you have a spirit animal you might ask them to provide you some guidance and memories. A good way to think of the spirit animal if you are not very new age (though you appear to be) is to think of it as an aspect of yourself...like you in a dream, for example. You are basically asking your subconscious about what it observes that your conscious mind might be missing. Of course, it is a more creative aspect of yourself...less grounded in the practical...so it requires some patience and study to figure out what it wants you to know.

Rae
who seldom talks about her beliefs, because I live in the land of Southern Baptists and other fundamentalist folks. Marvelous people but prone to overreact to paganism.

[np-complete.livejournal.com]

I'd be very interested in what you'd make of this dream, if you have a chance to look.

[rabid1st.livejournal.com]

Whoops! Sorry I missed this, or forgot about it...or something. Glad I checked back today. I will go look at your dream ASAP!

[mrs_roy.livejournal.com]

Consider it done, sweetheart! I'm not sure what the exchange rate is atm, but I'm more than happy to make a donation. If there's anything more I can do, you know you only have to ask. ♥

[rabid1st.livejournal.com]

You do enough, just lending me a shoulder from time to time. And if I can do anything for you, please do not hesitate to ask. I am, of course, your one Rabid cheering squad at all times.

Rae

[amybtvsfreak.livejournal.com]

Check with your local community action agencies as well. They can offer assistance that the government can't.
(I work for one, that's how I know)

[rabid1st.livejournal.com]

I have checked. A lot of what is offered here is focused on families or people who are very much in debt. For example, if you are facing eviction or losing your phone or power they can help you once a year. I have no children and I have avoided going into debt so far. I have had some help with medicine, which my companion, being pretty much Christian Scientist, is loath to buy, even assuming we could afford some of these hi-tech meds. One of them costs 400 dollars (that's our entire food and gas budget) for 30 days and requires monthly lab work and doctor's visits to monitor my vital organs. Actually, all the meds require the lab work, just for different reasons.

[ke0001.livejournal.com]

I'm lucky to live in a country where I get the help I need. It's enough for me to get around, but unfortunately there's nothing left to help people. When I was still living at my parents I was able to give to good causes but now everything goes to the rent and stuff. I will try to send you positive energy, unfortunately that's all I can do.

By the way I thought that the new health care bill had passed and that now everyone has the right to health insurance? And that they had to pay for the help sick people need. I know it wasn't the perfect bill but I though it was a start. Hasn't it started yet?

In the comments I read about shamanism and animal guides. I do believe in the spiritual world and wish I was more sensitive to it/them. I haven't been able to connect to it/them though. If you can spare the energy, could you tell me how I would be able to connect and how to find out who/what my animal guide is. But only if you have the energy to write.

K.

[rabid1st.livejournal.com]

I really appreciate your positive energy. That is what has sustained me for this long in my struggle. I am so happy that there are countries where people are treated with more dignity in illness. I can only hope that one day America will also be such a country.

The health care bill is a step in the right direction, but many it was very watered down by attempts to appease the conservative, moneyed interests. Unfortunately, those people do have a huge propaganda machine that convinces common people that they should be afraid of the government that was designed to represent them...be for the people and by the people. It is now run by moneyed interests and so is less helpful. But the health care bill will help come 2014, just not so much right now.

I also thought your question was a very good one...so I addressed it on the website. This journal being much more of a fun, entertainment oriented place...I hate to get all preachy or new age over here. I'm not sure how much sense I made, as I am quite sick and tired today...but still...you can go read my rambling thoughts at...

http://www.rainondust.net/news-about-rae.html

I hope they help and please feel free to ask me to clarify anything that seems unclear.

Rae

[sensiblecat.livejournal.com]

You know, it still astonishes me that in the richest country in the world, people are having to rely on Internet ficathons to pay for their cancer treatments.

Fibro seems to be a strange disease that falls between the cracks of public and private healthcare provision. I'm sure the reluctance to accept it as a genuine disability stems from a fear of opening the floodgates. But the fact that a condition is little understood is no less real to those who suffer with it.

We went through something rather similar when our son took to his bed for a year and literally couldn't get up. We saw his future draining away and there seemed to be nothing we could do. In the end, since we're fortunate enough to be able to pay the bills, we took him to a private specialist who diagnosed a rare sleep disorder - an inability to regulate his diurnal cycle which manifests itself as permanent jet lag. He has struggled with eczema wrecking his sleep patterns all his life and the trigger that sent him over the edge was a five day ski trip to Western Canada - he simply couldn't turn himself around.

Anyway, he was prescribed melatonin and he's improved enough to be fairly sure of a college place in a couple of months' time - we're waiting for his A Level results now. So, what with that and my own depression, we've had our share of chronic health problems.

I feel you've already given me so much - I'm almost completely inactive in fandom these days but you're one of the people I still check out on LJ. We agree on so much regarding narrative in general and Who in particular and ever since the horror that was Journey's End your faith in storytelling (sadly no longer in RTD) has been a beacon of light in a dark place. I don't mean my personal life, which is blessedly good and productive right now and has been for a while, but the cynicism of so much popular entertainment.

My spiritual path has been guided by the following writers since I left the Church about 10 years ago - Julia Cameron, Clarissa Pinkola Estes and the beautiful Druid Priestess Emma Restell Orr. But my most life-changing literary encounter was with Philip Pullman and his life-affirming humanism. And then there's Shakespeare, of course.

JC's technique of Morning Pages is a simple but powerful unblocking tool. My thoughts are with you and I'd be very happy to be more closely involved with your journey if I can help in any way.

In the short term you're most welcome to the money I no longer desire to spend on DWM - I find your posts a much more interesting read.

[rabid1st.livejournal.com]

Cat, you have been a light in the wilderness for me as well. As I ranted against the prevailing mire of storytelling in television, I knew I could count on you to back me up or add to the discussion. Many times when I was too tired to manage anything coherent myself, I would pop over to your journal and just bask in the sanity. :grin: I am so glad that you found a way to regulate your son's sleep schedule. I didn't have good luck with Melatonin myself, but I have had some relief lately with amino acids to regulate brain chemistry.

I believe you may have mentioned JC's morning pages to me a few months back. Someone did. Anyway, I recently broke out my dusty old copy of The Artist's Way and one of the many mostly empty journals we writers always have cluttering up our bookshelves. I've been doing morning pages now for about six weeks. This is the longest I have ever stuck with them. I'm afraid that I get quite impatient with my own whinging after a week or so. But this time, I just kept going for the sake of going. And I have found my creative voice again.

Or at least I am having ideas again. The application of the ideas is a bit problematic. For about a week I was sticking to a writing schedule of about an hour a day. But the pain in my arms got so bad that by the end of about the fifth day I couldn't lift them. I kept at it for another day or two but I had to give up on the idea of DAILY writing. I am now trying to work out how long I can write without accumulative pain. It's quite frustrating because I have ideas now...and I want to get them onto the computer.

Thank you so much for your offer of funds and help on my journey. I think it is important for me to give myself over to the spiritual side of life again. I lost so much of myself to the illness. As you are familiar with sleep disorders, you've seen first hand how they can sap a person's will. My family used to think of me as some sort of weirdly religious person...I practiced several times a day. I wasn't really weird...my family is just more scientifically oriented than spiritually oriented. Though oddly enough we have a long history of paganism popping up among us, too. The odd wiccan aunts and so on...I suppose I am the odd aunt in this generation.

But, the point I was making here...was that I gave up my practice a few years ago...when my illness took over my life. For the last three or four years most of my life has been about Doctor Who...and this illness and how long I would be able to keep going. Finally, after all this time off, I am beginning to come to some terms with the illness itself and the fact that I must still be ME, still have some kind of life beyond just being sick and tired. Hence the morning pages and the website back and, I suppose, the request for some help from my friends.

Rae

[monkeybatz.livejournal.com]

I hope you got my message. <3

Again, I'm sorry you have to go through this process of battling just to get treatment. I've seen my sister go through it was well with her lupus and I wish no one had to.

As many others have stated, in my eyes you have earned this money because you've given me more hope in my years of reading your journal than I've ever experienced else where.

Let me know if my simple request in the message sent is do-able and I'll give you more donations whenever you need them. :)

Be well Rae and live long and prosperous.

[rabid1st.livejournal.com]

I did get your message, I believe. It was a very easy, pleasant task you requested of me and quite do-able.

And I am so very glad I was able to give you hope over the years...even if that hope ultimately turned out to be misplaced in RTD. SIGH!

Still, I do like the look of Moffat's reset. I have gone back to study it again and it seems better the second time around, rather than being full of loopholes or something.

Rae
hopeful again. I am so easy to trigger to that default position.

[astitchintime-9.livejournal.com]

Dear Rae, all I have to send you are good vibrations, but I give them to you unreservedly. Your LJ is the only one I visit consistently, not because of the fic (which I do adore), but because I like your thoughts and your voice. You are a person with whom I like to spend time and for whom I wish only the best.

Please accept my warmest, most heartfelt wishes for strength and ease and courage and health. And for more tangible resources as well.

:Hugs:

[rabid1st.livejournal.com]

Thank you so much for your good vibrations. I think they help a lot. And may all your wishes come true. :grin:

It is good to know that I still have so many people who visit me even though I have not produced fic in two months of Sundays or more. I am happy that I'm not boring you all to tears with my harping on Who and the like.

Hugs to you, too.

Rae

[rillaotvalley.livejournal.com]

Something made me click on your name when I trolled my unused, dusty LJ aacount tonight. Hugs.

[rabid1st.livejournal.com]

I'm so glad that you came. First, there is the blast from the past of it all. Second, I am living vicariously through you and your baby on the DC Mall. And thank you so much for your care and support here, too.

HUGS back.

Rae