I love this entry, Rachel. You could write it into a beautiful child's tale.
/you made me smile too.
I hear people are now writing pre-nups to include keeping their own pets in case of divorce. Smart idea!
I'm sorry you lost your puddy tat that way.
Penelope how're things on your end today? Have you stopped by here today? If so, I'm writing to let you know I'm thinking of you. You showed a ton of courage by writing the above post. It's not easy to write about it when things stink and you wish you could fall apart. I think you'll attract good people to you who value your honesty and courage. You know, they may not be the people you'd hoped for or expected but that's what makes life so easy.
Peace,
Petunia
Yes Penelope it's common with this illness. They don't want to understand, try to understand, care to understand I think. People are too busy with things and lives and just dont' care. Someone else will help is the mindset now. Let the Government take care of them. I dunno there just seems less empathy in the human race.
I have given up trying and accept this is going to have to be a path I find on my own and find a life that is somewhat fulfillling.I find I have more happiness than I realized and I work to keep a nice even keel. But at times I can get very lonely and feel isolated as it's tough to get to some functions. I now say I will be there is my health allows and I would love to participate.
I am finding as much joy as I can being alone doing things and I find animals very very comforting.
I understand the feeling of invisibility. Frankly we have a society that is elf centered and ME focused. One day that will come crashing down around their ears some how.
Thanks Petunia
I spent hours on my computer yesterday signing up for Medicare drug plan and it causes me a lot of pain to do that.
I’m feeling better. Trying to just think about one day at a time and not who I’ve lost.
Been a bad pain week but today was better 
I have found the meditation practice of Tonglen taught by Pema Chodron to help my mental attitude and coping. She’s Buddhist but its not about religion. You can find her on YouTube I’m using everything I can find to cope since my dog doesn’t talk much. Have a good night …pain setting in.
I don’t want to start a debate. Just my opinion…But I find religion too opinionated and judgmental. I find more comfort in spirituality. This coming from a 40yr Anglican.
I used a former employee of SSI who got disgusted with number of sick people being turned down. So he left got approved to represent people applying for SSI. He got me my disability within 4 months! Mainly because he understands how they work.
Here are few tips he gave me for others.
Never use the non profit online sites...non lawyers or people who just graduated and studying to get bar, few just past the Bar. Point is they do not know what they are doing. He was right...they told me first that i could not apply since i did not right after i left my job, than they said I never get it and last that i have to go to court. all 3 were wrong! lol! plus a friend was using them....she started over 6 months before me and finally gave up on them when they had gone through all her possibilities and she never did get it from them. One reason they refused to send anyone to represent her in court. For that reason though she got to have new hearing.
do not use tv/radio national ads you see...same thing leave you high and dry if they do not have lawyers in your area and must fly one to represent you so drop your case leaving you without a lawyer.
Disability also has a lot to do with your age etc...older you get like one you are in 50 something it does get easier..i was not quite at that age but almost there.
All my doctors for years had told me that I should apply for it...so you will need all your doctors on same page thinking you do need it. 1 doctor who did not think a person needed it, prevented them from being approved.
OH CALL SSI because there are other ways they help people depending on your income, survivor benefits etc. good luck! and i say hire a person who has worked for them...he literally took all stress off me!!
Penelope, I also really like Pema Chodron and just referred few of her books/meditations on another site for someone! Something you may not know is that you can go join an Abbey where you can live and practice what she teaches all day long! I have often considered doing this.
There are many places like this of many main stream religions as well as some not so well known. Like up here we do have Buddhist Abbey/Temple where you can join or if you belong to same kind in another town you can stay there for minimal fees or free if you help like in kitchen. The one here is too hard on me the way they meditate...though they told me since of my illness i can alter it. Hour from here is another place, a Catholic Church but with group of Nuns..very small group who work on reviving old Christian art, mainly paintings. I looked into joining one of Pema's places ..Buddhism same way she practices it and there is group of Sisters back East who Garden year round. Making specialty food products to sale to support themselves as well as supply food for the homeless in the area! Negative point for me is you cannot bring your pets when you move in. So, I search online for spiritual sites to visit around where I live. Can be where you can hear brothers singing in hundred plus year old church or place from nature. My dogs like going to get out and smell new places and I like it as well since many beautiful places just fill up one's soul!
I also enjoy A Course In Miracles. Marianne Williamson follows it. You can get it off Oprah or off her own web site. I was reading it for years with a friend but she moved to Ecuador for a bit...we still tried to read using Skype..and now we are starting up again. You can just read one lesson per day. I do not want to get any debate either! i just found it amusing since i had just referred Pema same day as you had!
I figure each person must follow what is right and fills up their soul/heart etc..
Here is link for Marianne if you like and another one about Sacred Places/ http://www.marianne.com/
http://www.intenseexperiences.com/17-most-sacred-places.html hope people and you enjoy them!
Siskiya, what interesting information you provided in your posting, interesting for anyone to read about. Thank you for taking the time to provide all this information.
We can learn from the sacred places of other people's spiritual journeys and we find that we are more alike than we are different.
Gentle hugs
Rachel
Sisika
Thank you! I have an Episcopal here who teaches Tonglen and Buddhist meditation. I can’t go sit because sitting still for more than a few minutes causes back pain. But I do go talk to her occasionally.
Great ideas you have! My church that I no longer attend is just a few miles from here and one of the most beautiful 100 yr old cathedrals around. Thank you!
Hi Penelope, I was just checking in to see how you at doing ? I hope the Medicare drug plan works out in your favor, take on day at a time and please keep us updated
Hugs & blessings
I love it ! I hope it is O.K. that i printed out a copy? I want to put it on the wall as you walk into my home! because Sooooo many people just do not understand. hopefully this will make them think twice.
you are so right! you know I joined a long time ago when i was first diagnosed, but part of me was in denial, that i could deal with this myself, I didn't need strangers to tell me what i already knew, or listen to stranger whine about what i know. I kept getting E-mails, every singe day. and i would on some just delete, others the title caught my attention but i was busy trying to get through my mail (i'd read it later i would say to my self). and still the e-mails kept coming... and today i read the title of Vit. D. and bone pain. well I had just discovered that! and making time I come here to share that it does work. and i find myself reading so many posts. and wonder why oh why had i not been coming here before. I feel so stupid. that my pride got in my way of understanding i am not alone, I am not exaggerating the pain. and yes i too find myself wanting to "whine" about how miserable and frustrated i feel. because everyone around me is like "ya what ever, deal with it" You don't look ill. etc.. So to all I want to say thank you for keeping this page alive so that idiots like me will one day find their path here and feel as though they they have found their lost connection to a new sort of home and a new family.
I also know how you feel. I have a small family as it is, and they are all too worried about making money, buying houses, etc to give a crap about my illness. My boyfriend thinks fibro is all mental and whenever I say I am in pain, he just says what's new. I know the obvious answer is to leave him, however there is no way I can do that financially. I also have an 8 year old daughter, who thinks I am not as "cool" as her friend"s moms, because I can't take rollerskating, etc. I am fortunate to have two good friends, but I feel bad burdening them with my complaints, I feel like all I am doing is whining. Good Luck in finding some support and remember, you'll always find great advice here!
Hi Veronica
Other things you will always find here are support, caring and new friends so you arenever alone here. I think this is a very important and timely Discussion as we are on the road to Christmas. I think it will be a very good idea to come here and post with other people. Then we won't be alone.
It’s comforting to know its not just me. But it’s so sad that we are kicked when we’re down. I thank God for this group
i am so sorry about your family issues. i have a sister in law who kept pushing me to just get out there, etc. well, i had to distance myself from them!
i have been all alone with fibro in that i LIVE alone and somehow have to keep a house and myself together. i am still in contact with people through as i am blessed with some understanding friends.
being part of the Christian community has been part of being accepted.
i am really feeling low tonight as i steamed about three veges, went to the store, ironed a skirt and went into flare tonight. so it goes, i finally started taking celexa which has helped me tremendously. please thing about an AD as most people with severe chronic pain need them to endure the pain.
i had a new friend over and all i did was run to the bakery. we had those goodies and tea and a delightful time. i felt so good about instigating something social and making it soooo simple...not stressing. we jus enjoyed each other for about an hour and a half...it was perfect.
there are understanding people out there...keep looking and hoping....be easy on yourself...a lot of us are high achievers who are now typing on their tummies in flare as i am doing.
your are beautiful just the way you are....KNOW that...annie