Aching for my life back.....

[gowiththeflow]

I already posted to Limbo Land, and thought it might be a good idea to come here and introduce myself. I look forward to hearing the stories of hope, from others who have found their way through this mine field of being unwell, back to a better quality of life!

Hello, I'm GoWithTheFlow, and I'm a mess, lol. I'm the typical gal next door, happily married, mama to 4 grown children, and 4 geriatric deliquent furbabies. I have been blessed with 3 grandchildren over the last 15 months, with another on the way. (Told the kids they were not part bunny and to knock it off already, they didn't hear me, were too busy!)

Humor is my way of coping with stress, so you can never expect what might come flying out of my mouth. I would do stand up comedy, but the standing can be tricky. Not too many have a safe comfy couch they perform from. I have the feeling that tripping over your own feet in front of an audience and hitting the stage could be uncomfortable .....

The reasons i am even here are a hunch because of reading up to try and make sense of my multiple health issues, and that 3 people who know me well have cornered me and bluntly asked "is it possible you could have MS?" This includes my hubby, and 2 best friends. Most docs look at me and say they are clueless, refer me to another, and the merry go ride continues.

With the nest empty, i had expected life to be different, to be able to do everything i had put off, accomplish hopes and dreams placed aside because everyone else needed my time and attention more. To be honest, I'm a bit cranky with my limitations, and it would not matter what anyone called what is going on, as long as I got help to be able to cope and move forward!

I spent a bit of time correcting this post so you can read it. I have some cognitive issues on top of neuromuscular stuff going on, so often letters are transposed, or missing, and sentences can be jumbled. Wasn't sure if folks here could read Typonese. If not, you will by the time you get to know me.

Thanks for reading, and i am truly grateful to have found this site. have been feeling pretty much isolated and alone for a while.

May your day be filled with hope, laughter and love!
Sincerely, me.

[JerryD]

Hi gowiththeflow,
Mind if I just call you ,flo. I have been almost everywhere you can visit in these United states and I must have missed the ramp to discombobulation, USA. What's the zip there, #%&*@ ?

You seem to be smart enough and experienced enough to realize that MS (and many other autoimmune diseases ) have little medical treatments. These docs are baffled as heck. You seem to have a good, healthy and strong attitude towards this affliction. So what is left to do?

I have taken to getting myself in the best nutritional shape, the best physical shape (weight loss ), spiritual and mental, also. These are things I can do for myself that the docs agree with but can't do for me. I am working on following one of the MS diets, I have 3 recipe books, I think that should cover it.

So if you are wondering what you should do to feel better, diet's a start. Give your body a chance to rebuild. You may not know what is wrong but you surely know what is right. So do the 'right' thing, a lot. And if it works, you're golden. if it doesn't, you stand to lose some weight and gain nutritionally. Win-win.


** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[Seasha]

Humor is my way of coping with stress, so you can never expect what might come flying out of my mouth. I would do stand up comedy, but the standing can be tricky. Not too many have a safe comfy couch they perform from.

Welcome, welcome, Flow!! This original introduction made me LOL~ Humor is a great way to counteract the stress of being in Limbo...

Your journey sounds a bit like mine. 5 grown kids with 3 grandbabies born within 9 1/2 months (one is a 4 legged furbaby) Empty nest found me unable to accomplish long ago dreams, but hey! I've made new ones - accomplishing differently!

Anyway, nice to meet you and hope we hear from you often. (and don't forget to bring your humor along)

[Echo2099]

Welcome Flow!

You sound like a lot of folks around here, lost in limbo land. And you seem to have a grip on reality and still haven't lost your sense of humor. That's a good thing. I admire both of those qualities and look forward to reading more about your journey.

I'm glad you found us!

[jayjee]

This is a great place to get recharged.
When doors close, by looking at others journeys, you can usually, in time (try not to rush...after you've rushed some) you should be able to open new doors. There nare always new and exciting things out there, especially when we have an "excuse" to search.
Google out "funny", "humor", "laugh", etc. to recharge your "funny" neurons.
Some of this can actually be fun...some...

[Cat Mom]

Nice to 'meet' you gowiththeflow. You will find a wealth of info and support here and I'm looking forward to your humour. It really does help as a coping mechanism and it's good for the body and soul!
Jen

[gowiththeflow]

Group response here, see if i can get this right. hands, well, they are over taken by aliens, squirmy worms, I don't know what at times, so put together my typonese best as you can. is 2:30 a.m., and am sure where this insomniac is! NOT IN BED SLEEPING! lol. The muscle spasms have a way of preventing that at times.....

JERRY D - thank you for the encouragement and tips! I have been working on diet for about 2 years. my own discovery has been I feel far better when I keep all aditives, big pharm meats, GMO's, pesticide residues, etc out of my sytem. Am allergic to every antibiotic known to man about, and with it coming through in the food supply, makes perfect sense i could be affected. My tip to anyone - go organic if you are able to find it, and get second job to pay for it.

haven't seen any of the MS diets, if you could point me in the right direction, i would surely appreciate it. suspect it may be close to the lupus one where you avoid nightshade veggies to help with inflammation and all? And like you, feel there is a huge mindy body spirit connection, so caring for all well is good for anyone. Still learning to balance on one foot in the crane stance like Ralph Machio in the original karate kid movie.

SEASHA - hello and thanks for the welsome. I came up with a term for what i am instead of disabled, much more positive: differently abled. and yes, like you, making new dreams to turn into reality, trying to create the life i want and yearn for, no matter what stumbling blocks come along, have a burning compulsion to turn them into stepping stones.

have a darling supportive hubby, who helps me find work arounds, and gifts me with wonderful tools so I can work on my passions, and find my joy. Cinderella can keep her glass slipper, I'm a step ahead of her! oh and congrats on the babies, a beautiful reminder of how fresh, clean, simple, and beautiful life can be.

ECHO - thanks and glad i found you all too! this seems like a place of help that becomes hope. Hoping to learn a few tricks from those already ahead of me on this journey. I'll agree with having the sense of humor but grip on reality? Really? at 40 mumble mumble am still wearing my rose colored glasses happily with no intention of taking them off!

JAYJEE - hello, and you make a great point. Ever heard the sayings "If a door closes open a window" or "If there is no door, create a new one"? I like the idea of the second one - so somebody email me a sledge hammer so I can knock down a couple of walls. One of my fav places online to find goofiness for laughter is at stumbleupon. they have a humor category, and the site takes you randomly to pages you can like, dislike, follow links from and then do the same and other people will see the new ones you add. I find and send the most inappropriate things to work to my husband.....

CAT MOM - oh i so love your signature and avatar! all about the dog and the handle of Cat Mom - have to laugh. Laughter beats despair and tears of sadness any day. Keeps us going, no matter how unsteady our path may become. Is your pup a retriever - looks like one but with a lighter coat. alright, so i have a thing for flop ears - two bassets and a terrier mix that looks like a white "Benji" from the movies. They say people look like their dogs - true here, am low to the ground and genetically fluffy!

May everyone's week be filled with hope, laughter and love. Thanks for the welcome. You may rescend it in the future once you get to know me, lol.

[JerryD]

Flo,
The Swank diet book is available on line. There is also the McDougall diet cookbook. i assume it is also available on line. Amazon usually has all kinds of books, but I am pretty sure the McDougall and Swank books are available from the author's web sites.

[4boysmom]

Love your humor Flow! Especially the part about dieting

I figure I'd rather die fat and happy than skinny and miserable. Well, that is only partially true. I am trying to take off weight, but it is a constant battle with me.

But MS? Well, I worry more about losing my cognitive function than I do my walking ability. I stress more over sleep and constipation than I do getting around or looking a certain way.

You see, MS is a different battle for each of us. My worries are different than others with the disease.

So smile, laugh at yourself, and just enjoy the journey!

[gowiththeflow]

Flo,
The Swank diet book is available on line. There is also the McDougall diet cookbook. i assume it is also available on line. Amazon usually has all kinds of books, but I am pretty sure the McDougall and Swank books are available from the author's web sites.

Thanks so much JerryD for the books to look for. I actually collect just 1 thing, very old, like pre 1940's cookbooks, that have a wealth of info on how to cook from scratch, tips and tricks for dealing with whole foods, long term storage, and home butchering, etc. (I dream of having a small self sufficient homestead - not realistic, but.....)

When possible, buying dorect from an author often means the profit goes to them not some corporation. YAY! Another site besides amazon that will carry books often not found there, is Alibris. Their shipping can be high, but they even have rare books.

[AnnaMae7]

Flow....

Love your outlook on things, Humor is so important. I find myself joking all the time now, blaming everything on my MS. "What I was suppose to the laundry? What is that? I have seem to forgotten what we were talking about, must be the MS." The thing is they don't seem to fall for it.....go figure!

Anyway I am not in limbo and never was in fact I was blindsided by the MonSter, but I am coping the best way I can. I was diagnosed in June of this year, when learning more about this disease and how it effects you in so many ways such as cognitive issues my daughters response to that was "Oh Mom that explains SO much".....Meaning?...lol

But I just wanted to say I enjoyed your humor and that your not alone there are so many of us dealing with this and so many in limbo, you have come to the right spot! There are some real good people here and the chat room is a great support at least for me it has been. I was yearning for my life back, but it never really left, the road just got a bit bumpy and has a few sharp turns here and there, but it will still get me where I am going.....just differently than I planned and a tad bit slower (who am I kidding... a lot slower...lol gotta love MS)!

Look forward to your posts, hope to sees you in chat some time. Take care, Anna aka Tracy

[Thomas Jackson]

Flow , As far as stand up comedy : consider Jerry Lewis , Chevy Chase , and even Dick Van Dyke. Tripping on their own feet worked for them . Don't ever lose your sense of humor.

[gowiththeflow]

.....
But MS? Well, I worry more about losing my cognitive function than I do my walking ability. I stress more over sleep and constipation than I do getting around or looking a certain way.

You see, MS is a different battle for each of us. My worries are different than others with the disease.

So smile, laugh at yourself, and just enjoy the journey!

4boysmom - so sorry i somehow managed to not answer your post. I was going to be here last night, but my left hand had other ideas - decided a half clenched and stuck there fist for 7+ hours was more entertaining. Never a dull moment!

Is a good thing i was in a dress, so bathrroom runs were far easier. I must remember to not wear undergarments more often, so much faster and easier when extra challenged! For any fellas reading through, try a kilt. If the Scottish guard can pull thm off, you can too!

as far as cognitive issues go, if they fully give, you won't care if the rest of your body works anyhow, so you are very right there! loss of hand function though? oh dear, haven't figured out that work around. Let me know if there are any robotics whizzes around here please? I could use an R2D2 or something.

so you have fully encountered the MonSter. May your path be a smooth as possible, and now you will get to pause and smell the roses along the way.

[gowiththeflow]

AnaMae7 aka Tracy, love your avatar, sure your name isn't Bonnie as in Bonnie and Clyde? *grin*

I will look for you if my hands will allow me to manage in chat. one finger typing annoys others in a chat room, they forget what was being talked about by the time you reply!

would love to get back into doing some writing, and considering buying the you speak it types program. I could always keep a document open on the desk top, speak my response, the copy and paste it in room. Wow! I just invented a new for me work around! Gotta love those rare lightbulb moments.

I wish you hope, laughter love and light for your path. Anyone facing this disease or anything like it in limbo is remarkable, and how lovely to find a place of help and hope, a community, a village, a family by choice!

[AnnaMae7]

Thanks for the response Flow...... my avatar is a drawing I did of a 1930 movie star named Clara Bow and she was in the same era as Bonnie and Clyde...*grin*

As far as the one finger typest, hello welcome to my world! This is a chat room in MSWorld, there are many, many one finger typest! lol. Hope to see you there!