New Here !!! Glad for the Friends and Support !!!

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MVASurvivor
New Member


Date Joined Feb 2009
Total Posts : 9
   Posted 3/1/2009 3:34 PM (GMT -7)   
Hello - I am Bev - New on the Forum. I had to finally join after reading for a while. I just wanted to say hello to everyone and Thank you guys for being my online friends. I too have learned to endure more than the usual trials and tribulations as all the posters on this forum. It is nice to know that I have an understanding family and support network just keystrokes away. Thank you again !!! Take care all.

turn
Motor Vehicle Accident survivor, Closed Head & Facial Injuries, 16 Reconstructive Surgeries to both face and front of skull. Chronic Pain, Fibromyalgia, Neuralgia, Rheumatoid Arthritis and mild Narcolepsy. Currently being treated for probable MS. - It a fight everyday just to laugh and smile - but I can always find something....we are all still here, right ?


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 3/1/2009 3:45 PM (GMT -7)   
Hi, MVASurvivor,
I wanted to welcome you again! 16 reconstructive surgeries? Wow! You ARE a survivor!

BTW I also have a seizure disorder. There is an epilepsy section of the forum (you can do a quick switch using the menu on top) but I don't find it's nearly as active as this part of the board.

So glad you decided to join us! And if you've been reading awhile you know we get a little crazy (the "time to fly" thread is the current one) so feel free to jump in if the spirit moves you.

PaLady

MVASurvivor
New Member


Date Joined Feb 2009
Total Posts : 9
   Posted 3/1/2009 4:02 PM (GMT -7)   
Oh Great !!! Thanks for the tip and the Welcome !!! tongue
Motor Vehicle Accident survivor, Closed Head & Facial Injuries, 16 Reconstructive Surgeries to both face and front of skull. Chronic Pain, Fibromyalgia, Neuralgia, Rheumatoid Arthritis and mild Narcolepsy. Currently being treated for probable MS. - It a fight everyday just to laugh and smile - but I can always find something....we are all still here, right ?


Stella Marie
Veteran Member


Date Joined May 2005
Total Posts : 601
   Posted 3/1/2009 4:55 PM (GMT -7)   
Welcome.....

You and I share quite a few similar ailments. I also have Narcolepsy. I can't tell you the number of times I have fallen asleep in my cereal bowl or while I am talking to someone. Or how about this one - have you ever fallen asleep with hot coffee in your cup. OUCH. I now use travel mugs! Narcolepsy and MS can be tied together as they are both brain based maladies. I bet you don't sleep well at night either.

Do you want to come with me to see the Wizard of Oz, maybe he can give both of us new brains. After reading your post, you might want a new skull too - yours sounds like it has been thru H*ll.

Welcome again..

Stella Marie

Rare neurodegenerative disease called “Multiple System Atrophy”.  Wheelchair, O2, & Bipap, intrathecal pump, Neurostimulator, dystonia, neuropathic pain and spasticity.


Pete trips again!
Veteran Member


Date Joined Nov 2006
Total Posts : 1899
   Posted 3/1/2009 7:00 PM (GMT -7)   
Hi Bev,
I'm glad you found us, if you have been reading a while, you know that there are plenty of carring people here. It amazes me every tome I post how many of them respond and truely try to help me. I sure don't deserve them! Sounds like you've had quite an ordeal, if you don't mind me asking, what is a closed head? I never heard that term before. You are right about us still being here, myself sometimes I feel like the preverbial cat w/ the 9 lives. There must be a reason right? I take one look at my 2 sons and am so glad I lived back when there was no way I should have, a few times! Anyway, welcome to the family, I know you'll love it here, our CP brothers & sisters are the greatest!
Your new CP brother,
Pete
56 years old, Surgury, Radical Prostatectomy 8/20/03, PSA 6.6, Gleason 3 + 3 = 6, Adenocarcinoma extent (moderate) Stage & Margin:T2NOMX, No Metastases, Organ Confined, bone scan: Neg. 3 1/2 years of depression after surgery prior to Hypogonadizm DX, Testosterone Theropy> new 2/6/09> 400mg injections every 2weeks . 56 and so glad to still be here to see my two sons grow up to be fine young men. They are both serving in the US Navy, one on the aircraft carrier USS John Stennis in port in Japan and the other on a Gator Freighter USS Bataan stationed in Norfolk, Va. I am one proud PaPa! 


MVASurvivor
New Member


Date Joined Feb 2009
Total Posts : 9
   Posted 3/1/2009 7:06 PM (GMT -7)   
***A closed head injury can range from a concussion to massive head injury - the difference being no outward blood, no split open wounds, all internal. In my case, all of my facial bones and frontal skull bones were crushed, but the skin was never broken. (eye sockets, jaw, cheeks, chin) Took 16 surgeries, 4 ribs grafted to rebuild, reshape and repair all of the fractures. 2 years with my jaw wired shut, 2 years with a tracheotomy while the repairs were healing..learned alot of self control...lol

So far the only place I sleep well is at work usually on my keyboard, during a meeting, or in my car at lunch when I attempt to put my feet up while I eat lunch...lol I love to crochet and usually do most of it in the middle of the nite while everyone is fast asleep...

I was treated for years by the "take a few motrin" kind of docs until being rushed to the hospital twice with perforated stomach ulcers. Finally found one that agreed to try other meds, but is very restrictive with my treatment, so I still suffer daily.

Would you believe I still don't feel like I have found the right doc...20 years and still searching...lol I currently live in NJ and I would be willing to travel whatever it takes for the right doc. If anyone has any suggestions to lend my search, I am open. Would love to find a Neurologist who is familiar with chronic pain issues.

Nice to meet everyone and hoping to learn alot from new friends. tongue
Motor Vehicle Accident survivor, Closed Head & Facial Injuries, 16 Reconstructive Surgeries to both face and front of skull. Chronic Pain, Fibromyalgia, Neuralgia, Rheumatoid Arthritis and mild Narcolepsy. Currently being treated for probable MS. - It a fight everyday just to laugh and smile - but I can always find something....we are all still here, right ?

Post Edited (MVASurvivor) : 3/1/2009 7:12:20 PM (GMT-7)


Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9622
   Posted 3/1/2009 11:41 PM (GMT -7)   
Wow, you've been through a lot, So, I'll offer up
support and lots of soft hugz....
motor vehicle accident's have cause my back pain and I would not
wish it on anyone.
I sure hope you can find a good PM Doctor .
There are a lot of nice people here and hope someone can tell ya about or
where to find a good doctor in New Jersey..
{{{{{{{{{{{{{{{{{{{{HUGZ}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}
**********************************************
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc, Fibromyalgia, Gerd, Enlarged Pituitary Gland
******** "We could never learn to be brave and patient if there were only joy in the world" from Helen Keller *********

********>^..^<********>^..^<********>^..^<********


uniquelyme
Veteran Member


Date Joined Nov 2008
Total Posts : 1037
   Posted 3/2/2009 1:41 AM (GMT -7)   
 
 
Hello MVA,
Welcome Welcome Welcome... We all share your pain. Literally.  I hate to hear of anyone going through all of the things you have been through, especially with not being able to find a good Pain Dr. to help you.
 
You, of all people, need a PM Dr. that will treat you with kindness and respect.  You have been through enough without dealing with a*#ho*#@!!!  You know what I mean.
 
I have never been in a major car accident, but I do understand pain.  We are all with you, when you need a friend, a shoulder to cry on, someone to yell at, or just someone to laugh with.
 
That's what friends are for...(wasn't that a song)? tongue
 
Everybody....sing it with me....
 
Keep smiling, keep da da, that's what friends are for.....
 
I forgot the words...Oh well.
 
Me.

 
We are all in the same boat...unfortunatley it seems like it's sinking...
 
Rhonda
Post Lamenectomy Syndrome
Hemi Lamenectomy
Spinal Fusion
 
120 mg. Methadone daily
60 mg. Oxycodone daily
Lyrica as needed 

 


skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 3/2/2009 8:29 PM (GMT -7)   
Hi MVASurvivor,

I too want to welcome you to HW. I've been scare the last few days & came back to find all these wonderful new people! It sounds like you have been through an incredible amount! I'm so sorry that you have to join us because of your pain, but happy to see another new face (so to speak)! Keep posting! You'll find (or you may already know since you've been reading here for a while) that we are an incredibly supportive group! It is priceless to have a group like this where everyone UNDERSTANDS!!

Skeye

mom9mom
Regular Member


Date Joined Sep 2008
Total Posts : 489
   Posted 3/3/2009 1:26 AM (GMT -7)   
MVA just want to stop for a min. and say HI.Boy have you been through a lot.Hope you find a good DR. to help with the pain soon.
Lost half of my small intestineJan.2008.Ilieostomy for 5 months then reverst in June 2008,Nerve damage to right leg,part of my right hip bone removed Jan. 2008,Cronic pain,hernia,infection in my back called discites,and depression.Gallbladder removed Nov,2008.Surgery to fuse L3 and L4 vertabra Dec. 31,2008.Mother to 9 kids 7 boys 2 girls and 1 stepson.4 grandsons,9 grandaughters.4 of my grandkids I inherited from my twin sister who passed away 6 1/2 years ago from a blood clot after surgery.God has given me my life back after I almost lost it.Even though its a painful and sometimes hard road to walk I take it one step at a time and give thanks to god for every step I take.


Scarred_for_life
Veteran Member


Date Joined Jul 2008
Total Posts : 1559
   Posted 3/3/2009 4:34 AM (GMT -7)   
Hi MVA. Just wanted to stop in for a min and welcome you to the forum. I got into an accident many years ago. I was driving my ex's truck and got tboned by a mustang!! Of all things to be hit by huh? Anyway I too suffered a closed head injury and went through so many doctors and tests to find this. Anyway, to this day I still have problems with my short term memory; if I don't write things down I will forget within a few min and a chunk of my memory from the accident is gone.

It was the other guys fault. He ran the red light as I was half way through the intersection. They told me a half inch further down the side of the truck and I wouldn't have made it through so I got very lucky. So I know what you are going through trying to remember things. Just wanted to say Hi and welcome you to the forum.

Hugs

Scarred
What doesn't kill us only makes us fight back harder! :P


MVASurvivor
New Member


Date Joined Feb 2009
Total Posts : 9
   Posted 3/3/2009 9:49 AM (GMT -7)   
Ahhhhh, Thanks for all the nice wishes and hugs !!!  All are much needed.
 
Sad to read there are so many of us with all the same chronic issues and pain problems.
 
If only we could all get re-booted somewhere and start fresh...lol
 
Thanks again - all the posts made me smile...lol
 
Bev tongue
Motor Vehicle Accident survivor, Multiple Head & Facial Injuries, 16 Reconstructive Surgeries to both face and front of skull. Chronic Pain, Fibromyalgia, Neuralgia, Rheumatoid Arthritis and mild Narcolepsy. Currently being treated for probable MS. - It a fight everyday just to laugh and smile - but I can always find something....we are all still here, right ?


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 3/3/2009 1:41 PM (GMT -7)   
I keep trying to find my reset button, too!! When you figure it out, MVA, please tell me where it is!

PaLady smilewinkgrin

MVASurvivor
New Member


Date Joined Feb 2009
Total Posts : 9
   Posted 3/3/2009 2:11 PM (GMT -7)   
If its like everything else in life...can only be reset by authorized dealer...GOD...lol
 
Take care !!!
 
Bev tongue


Motor Vehicle Accident survivor, Multiple Head & Facial Injuries, 16 Reconstructive Surgeries to both face and front of skull. Chronic Pain, Fibromyalgia, Neuralgia, Rheumatoid Arthritis and mild Narcolepsy. Currently being treated for probable MS. - It a fight everyday just to laugh and smile - but I can always find something....we are all still here, right ?

Post Edited (MVASurvivor) : 3/3/2009 2:29:34 PM (GMT-7)


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13458
   Posted 3/3/2009 3:26 PM (GMT -7)   
Hello Bev,
 
Welcome to Healing Well. I had to crack up reading your post on our buttons being reset at the dealer. So true. What a hoot, gave me a good laugh. We all need to laugh around here alot more than we do. Its good medicine so they say.
 
Gosh after reading your intro and what you have been thru my aches and pain are minor. I understand closed head injuries all too well. By brother was in one car crash 5 yrs ago, he sustained a closed head injury, bleeds on both sides of the bain. He was prononced DOA at the scene, managed to revive him but we were told he would not make it. He did by the grace of god. It was a very long dranw out ordeal one you are all too familiar with unfortunately.
 
It just burns me to read about someone that has been thru what you have, say they are not being treated properly for their pain. You know this day and time you would think drs would have advanced in this field since there are millions that suffer with this disease. But, yet its one of the most undertreated diseases in existence. One thing you might consider doing is go to Google.com, then type in pain mgt dr and your city & state and see what all pops up. If you are looking for a new neurologist type in neurologist in your town & state. At least that gives you a start and alot of the drs have web sites to view. I am in Tx so I am no help with you other than suggest google. You may type in chronic pain in Google with your town & state and see what that pulls up. Try calling your hospitals referral line for some names, sometimes they can be a good resource.
 
I have a pain pump and with a new dr that is just awesome. She has been a blessing in disguise and knows her business. I feel so much better than I did with the former dr. He quit practicing and referred his pump patients to this dr so we are finally being taken care of properly. He was under educated in pain pumps and under educated in pain medication and was a pain management dr.  Not a good combination by a long shot. Watch out on pain mgt drs. some do not prescribe medication only do procedures. So be sure to ask if he also gives medication.
 
Again I wanted to just say welcome aboard. I sure hope you can find a good dr or maybe someone on here will come along and know your area.....Susie

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