No more options for my eyes

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Mrs. Dani
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Date Joined Jun 2009
Total Posts : 2787
   Posted 4/6/2011 5:26 PM (GMT -6)   
 
     So I guess that is it. 2 more eye surgeons, same result. No one wants to make the drainage hole larger in my right eye to drain the "protein build up". So my vision will remain "cloudy". No one will aspirate the floaters in both eyes due to the cells of the lenses stripping. The risk of damage is too great. The risk of causing multiple cataracts is 99%. The larger "translucent" spots are nerve damage. My eye is no longer able to focus due to the progressive nerve damage and it will get worse over time. I have basic "blurry with color" in that eye and nothing more. The damage from over use in my left eye, along with "tissue softening" in both eyes (normally associated with 70+ yr old), is causing extensive blurry ness in my left eye. They will not risk surgery in either eye. The rick is too great. There are "trifocal" lenses that are "seamless" that can help me to see a bit more with my left eye. We will see..
 
     So, gosh I guess that is it. I guess that is just down hill from here. It is up to my eyes as to how fast I will loose the rest. It is in His Hands now. I just its just that I well its just that when I was 21 I could finally see. The highest rated surgeons in the state (there were three) would help me. It didn't cost anything. They recorded everything. It took so long to learn how to drive and walk side by side with someone. And going down stairs and walking down halls. When it was all over I could see. I could see the little hairs standing up straight on my daughters head when she woke up. I could see millions of leaves in the trees and it was so so so beautiful. I kept going to parks so I could watch trees. I could see the gold flecks in my daughters brown eyes. I could see the green fleck in my husbands  blue eye. I just don't get it just not fair. I loved it and I didn't take it for granted, I know I didn't! Why would God give me 5 years to see? Why make me blind my whole life only to give me only five years? I appreciated it all so much!!!
 
      Maybe, maybe all this fancy medical advances are just fighting against nothing. Maybe some how we are meant to live a certain way and no matter how much we fight it, we still end up with the same ending. I wish I had never gotten the implants in the first place. It had been that way my whole life. It never bothered me. It was just as natural as the sunrise. When that eye doctor told me he could help. That he had called and there were some surgeons very excited to meet me I thought he was lying. I was anxious to prove he was a liar. When those surgeons told me they would help me, I still was sure they were lying. Well they weren't. They weren't lying. I just loved it all so much! Now it is gone again. Worse than it was before. I guess I have learned that it is easier to never have had. Than to have and loose.
 
*hugg*
dani

TWO roads diverged in a yellow wood
And sorry I could not travel both
And be one traveler, long I stood

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momtofourangels
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Date Joined Apr 2010
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   Posted 4/6/2011 5:36 PM (GMT -6)   
Oh dear Dani. It breaks my heart to hear this. I have floaters in my eyes, but they've never said anything about them. I just wish that your eyes would stop getting worse. I'm so sorry. Know that I'm here for you anytime you need to talk. Take care and God bless.

Love ya my dear friend
Loretta
Dx: osteoarthritis, bursitis in left hip, Osteoarthrits in right hip, compression fracture in thoracic spine due to falling on frozen ground March 2001 , ddd, spinal stenosis, bone spurs, osteoarthritis in spine, osteoarthritis in both knees

solar powered
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Date Joined Nov 2007
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   Posted 4/6/2011 7:54 PM (GMT -6)   
((((Dani))))
Wish I knew how to make this all better for you.

Lee
Hope and attitude are everything. Never, never, ever give up.

mrsm123
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Date Joined Dec 2007
Total Posts : 1235
   Posted 4/6/2011 8:33 PM (GMT -6)   
Dani,
I know that nothing we can say here is going to ease that ache in your heart and mind tonight.
I don't know why things happen the way they do, but maybe, just maybe god gave you those years and all of those wonderful sights so that you can remember the brightness of the colors and the vividness of the hues, and the patterns on the leaves of the trees when the day comes that your eyes no longer let you see them . Maybe your eyes were meant to take snapshots of those things that you love so much, so that you don't forget what it was like when you first saw them.
I don't know, I wish that I did, as much as I wish that I could take away the pain that you feel in your heart tonight. I wish that I had someway of giving you your sight for the rest of your life.
Sandi

CRPSpatient
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Date Joined Mar 2011
Total Posts : 1276
   Posted 4/6/2011 9:35 PM (GMT -6)   
Dani, I'm so sorry. I wish there was a way to make this easier for you and to take away your pain.

I am thinking of you. *gentle hugs*

Laura
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Somac, Cipramil. Have a spinal cord stimulator, intrathecal pump with baclofen & bupivacaine and doing physio.

Blessedx8
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Date Joined Aug 2008
Total Posts : 3193
   Posted 4/6/2011 11:03 PM (GMT -6)   
My heart hurts for you Dani.... I'm so sorry you are going through all of this.
 
Thinking and praying for you tonight.... Love, Tina

Mrs. Dani
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Date Joined Jun 2009
Total Posts : 2787
   Posted 4/7/2011 7:35 AM (GMT -6)   
 
 
  Jeeze, I sounded so terrible yesterday. Today I am just plain mad. I think I need to call my psychologist. I am just so dang angry and worse I don't know who to be angry at. This is so frustrating. I cannot believe I have to go through any of this at 30yrs old. Makes no sense. I wish I had never gotten the synthetic lens implants. All it did was let me see for 5 years and make my eye produce a protien behind the lens. I know that out of the laundry list of things wrong with my eyes that it is just one small part but... but nothing. Ugh, I have to get rid of this anger.
 
*hugg*
  dani

TWO roads diverged in a yellow wood
And sorry I could not travel both
And be one traveler, long I stood

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Rhaevin
Regular Member


Date Joined Jan 2011
Total Posts : 230
   Posted 4/7/2011 8:34 AM (GMT -6)   
*gentle hugs* Yes, Dani, but at least you had 5 wonderful years, and it sounds like you made the most of them; and that is more then some people will ever get. At least you were given the gift of sight.
 
You have every right to be angery and upset, and I wish I could give you an answer as to why bad things happen to good people; it seems so unfair to add this to the top of everything else you must deal with. But I'm glad you had the surgery because it gave you those five years, and all the little things you got to see that you would have missed out on otherwise. Yes, I know, how can you miss it if you don't know what you're missing, but honestly... if you could go back in time to that moment, would you honestly change your answer?
 
I'm heart broken this has happened to you, but I'm glad you got to experience the joy of being able to see.

tmjpain
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Date Joined Oct 2008
Total Posts : 2024
   Posted 4/7/2011 11:36 AM (GMT -6)   

Oh my gosh Dani, tears are running down my face. My heart breaks for you my friend. I wish there

was something I could to help you. Just know that I am here for you if  you want to vent. Remember

the beautiful years with those bumblebees, and your nature walks and the gorgeous pics you tooks.

Take this one day at a time because you never know what will happen. And if you're angry, that's ok,

you have the right to be angry. Talk to someone about it and then perhaps you will feel a bit better.

I am so so sorry Dani. Continue to be that brave, couragous young lady. God will carry you thru these difficult

days. He's always at your side.

We all love you Dani. You are a 'one of a kind' lady!!!

                  Love Suzane


MIKEL99
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Date Joined Feb 2010
Total Posts : 914
   Posted 4/7/2011 11:42 AM (GMT -6)   
    Oh Dearest Dani , I am devastated to hear this news my friend , it is so unfair , you are sooo good a person , I am so upset , you don't deserve this in any way . I pray for you and I will continue to pray for you always , you will adjust and cope and thrive I know this , I simply wish for you to have the joy in your life that you bring to others by your wonderful heart and your giving , caring way of being . Everyone and everything you touch is better for having been touched by you , we aren't given anything we can't handle in life and you have already handled much , with grace and dignity and character , you are just such a real and sincere human being . I think of you often , and I'll always be here to support you in any way my wonderful friend . All blessings to you , David , Tessa and Rosie . Your Friend Always , Mikel 

cogito
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Date Joined Oct 2010
Total Posts : 926
   Posted 4/7/2011 11:44 AM (GMT -6)   
Dani,

I'm so sorry to hear about this. I don't know if your current doctors have explored all the options, but maybe someone out there knows of something else that could be done or will have a different view about surgery.

My former neighbor was a prominent opthamological researcher and surgeon, but he has since moved away, now teaching and practicing at Harvard Medical School. He and I barely ever interacted as he was always at his lab, but if you would like to contact him and drop my name (for the little that could do), email me and I'll give you his contact info.
C4-T4 Scoliosis (disk degeneration, stenosis, narrowed neuroforamen, bone spurs), RT hip and SI joint damage from car accident. Also, pectus excavatum, supraventricular tacycardia and mitral valve prolapse syndrome.
Current meds: Ultram ER 300mg daily, breakthrough - hydrocodone 10-15mg, or oxycodone 5-7.5mg. .25-.5mg ativan as needed for sleep, Verapamil 240mg SR (for tachycardia). [/gray

Chartreux
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Date Joined Aug 2006
Total Posts : 9664
   Posted 4/7/2011 3:36 PM (GMT -6)   
Dani
you have every right to be mad...but for now while you can still see, makes a picture book
to hand down to your children, so that'll be the best way for memories to get pasted down.
and don't give up hope...hang on to it, even when they say there is none, hope is always there.
Bless ya heart, I'll be sending up prayers for you tonight....
When your ready, turn that anger into a push to find the best doctor in this country...
Will be pulling for you.
((((((((((((((((((((((((((((((Dani))))))))))))))))))))))))))))))))))))
luv ya, prayers and healing hugz
**********************************************
* So many dx's I could write a book* "It would be nice if we could use the edit button in real life"...
********>^..^<********>^..^<*******

Chutz
Veteran Member


Date Joined Jan 2005
Total Posts : 9090
   Posted 4/7/2011 11:23 PM (GMT -6)   
Giant, warm hugs, my sweet friend. I agree with Suzane. Look at all you you saw with those darling Bumblebees. All of the bedtime stories you read to them, those innocent eyes you peered deep into and those tiny fingers and toes when they were so young...you may never have seen them without the surgery.

No, it's not fair and like others have said...it's OK to be angry. Who wouldn't? Maybe talking to your psychologist will help you use that anger is a way that would be more helpful to you...so you can feel better about the anger instead of chastising yourself. Don't waste your energy on what could have or should have happened. Grab those little girls and spend every single minute you can with them. Just having them near you is unbelievably precious.

Hugs,
Chutz
Moderator on the Fibromyalgia and Chronic Pain forums
~*~*~*~*~*~*~
Daily Donnybrook: Fibromyalgia, Insulin Dependent Diabetes. Ulcerative Colitis, Rare form of Dermatitis, Collapsed Disk, Osteoarthritis (especially in right hand and neck) and a couple of other adjunct agitations.
~~~~~
Against the assault of laughter nothing can stand.
Mark Twain

stingray
Regular Member


Date Joined Oct 2009
Total Posts : 175
   Posted 4/7/2011 11:31 PM (GMT -6)   
Hi Dani
 
I'm sorry to hear about the way things are going. I know no amount of words can take away the pain you feel. I wanted to let you know I'll be praying for you. You never know what the future will bring but I do know that God has a plan for all of us. Don't be afriad to tell God how angry and unpset you are. I pray that whatever plan he has for you, he puts the joy and love of life back in your heart. Take care ((((((Dani))))) your friend always
                                         
                                                   .Randy

flowery
Regular Member


Date Joined Jul 2008
Total Posts : 440
   Posted 4/8/2011 12:06 PM (GMT -6)   
Awwww....Dani..!!! I tell ya life sure isn't fair and i'm so sorry that you've have to endure so much. If you were here we'd have a hug, sip on something good to drink and make jewlery:)
Is there any hope with a transplant surgery for you? I know my Aunt had an infection in one of her eyes which has left her blind in that eye. She lives in Houston and said that there could be hope with a transplant. idk???? ....but there are many people who donate orgnas and if it meant seeing your bumblebees grow up it might be worth a thought.
If not, you are still an Amazing Lady!!! You can smell the leaves, hear the birds, and feel the tears of your children just the same. Be angry for awhile But i know you'll bounce back...seems your spirit:)
Loves
Heather

Tirzah
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Date Joined Jul 2008
Total Posts : 2317
   Posted 4/8/2011 1:16 PM (GMT -6)   
Dani,
I wish I could stand next to you and give you a great big hug. I can imagine how tough things must be right now for you. After years of doing better & getting a grant for graduate school & starting clinicals at a great school, my seizures returned this week in full force. All I could do was cry for a whole day straight. I thought I was in the clear. How do we ever plan for anything when nothing is guaranteed?

I know you mentioned God, so I hope the fact that this video mentions God won't trouble you. It's not a sermon or anything, just a biography about a woman with a disability. I watched it myself last night & wept. It is 27 minutes long & you can get almost as much from just listening to it as from seeing it. The only thing I would add is that the "star", Robin, is this beautiful lady with Down's syndrome. She is barely taller than the children she teaches. And she smiles for much of the video. Here it is www.joniandfriends.org/television/when-robin-prays/

I was so angry at everything & everyone, too. But the video helped me to see all the beautiful things that can accompany limitations. I have it playing in the background over & over and it helps me not feel so mad about things. I know now that even though I cannot do everything exactly as I had planned, there are still many wonderful things I can do while living with this disability -- I believe the same is true for you. I hope you can find some measure of hope & joy & peace today. You are a wonderful person and we are all grateful for the time you give to moderating this forum.

soft hugz,
Tirzah

sherlockjr
Regular Member


Date Joined Mar 2011
Total Posts : 22
   Posted 4/8/2011 1:49 PM (GMT -6)   
I'm so sorry to hear this news. My fingers are crossed that some solution exists out there. Know that I'll be thinking of you.
—Patty

"No one can make you feel inferior without your permission."
—Eleanor Roosevelt
___________________
DX: Fibromyalgia, myofascial pain syndrome, spinal stenosis & compression, bulging disks, headache, osteoarthritis, facet joint pain, tendonitis, genetic condition making me prone to clots, dizziness (from blood thinners). MEDS: Lyrica, Celebrex, amitriptyline, hydrocodone, oxycodone

Becky77
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Date Joined Dec 2005
Total Posts : 1768
   Posted 4/8/2011 4:44 PM (GMT -6)   
Dani,
As I learn more and more about you and the things you've gone through, I learn that you're stronger and stronger than I can ever imagine being. Lately I've been stunned and questioning things as I've met and seen such wonderful people who have to go through so much. If we could see why we have to endure the things in our life, it would be so much easier, but unfortunately the why's of life aren't for us to know for now.

I wish I could send you some comfort and understanding to make this time for you easier. I wish there was something I (or anyone here) could do to make this easier on you, but I know that's just not possible. Just know that I am thinking about you, wishing you well, and praying that you find the strength to get through this.

Many hugs and support to you Dani.
Becky

Crohn's since 1997
Surgeries: 2 Bowel resections, appendix & gallbladder removed
Pulmonary Emboli & Pneumonia 2009
Currently on Humira, Omeprazole, Prozac, Seroquel, Calcium, Vit D, Aspirin, B12 shots

flower123
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Date Joined Apr 2009
Total Posts : 856
   Posted 4/8/2011 5:34 PM (GMT -6)   
Dani,

I am so sorry that you're going through this with your eyes. I do agree that sometimes we need to get angry. I think it can help us get through things, and helps us with the fight. I am going to pray like crazy for you. I would be angry too--furious with God--questioning everything, but I think that the thing that helps me get through everything is the support that I get from the ones that I love. I know that is what gets me through.

Hugs,

FLower

Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 4/8/2011 8:58 PM (GMT -6)   
     Everyone has a lot of questions so I guess the best way to answer them is to talk about my eyes. 
 
    Believe it or not, my history has been all over the U.S. Congenital cataract, then another one when I was 7 (apparently another much smaller at some point during my teenage years) in my right eye. Its rare. Very rare. No one was sure what to do at first. They tried hard to force my right eye to stay strong by putting a patch over my left eye every night. The vision changes in my left eye were gradual. From doing all the work...
 
    At 21 the damage was getting bad in my left eye. It was not holding up well at all and by that time the progression of damage seemed to be accelerating. I was approached about synthetic lens replacement AKA cataract surgery. One surgeon was from a neighboring state. Very best in his field. 2 others from my state. They did every test imaginable and said they would get back with me. They needed to get in touch with other various surgeons and one who had seen congenital cataracts of unknown origin before(well unknon at that point).
 
     They call 2 weeks later and I am given the pros and the cons. The pro being of course the ability to see and helping slow the damage in my left eye. To what extent they would be able to restore vision in my right, they were unsure. The cons being the nerve damage. Nerves never grew. That eye, due to non use, was also mild amblyopia. It had never really been used so the muscles were weak. Another possible outcome would be a protein build up behind the implant. The process of the eye trying to form more cataracts, but since the lens would already be replaced, the protein would just harden behind the synthetic lens. They would monitor me closely. So I agreed. Everything was recorded. Every last detail about my life and my history. Even the surgery. 
 
    Then I got home. I began the process of healing. Slowly learning how to do things. Walking with someone, going down stairs. Navigating objects in from of me. Driving, oh gosh driving. It was very hard to judge distances those first three months. Eventually the last series of eye exams is done and as it turned out my eye with the implant could see better than my left. My left eye had become the bad one. Soon my "story" or the "case file" about my eye made it all over the place. I was 22 by then.
 
     Then years later, around the same time that my teeth began to crumble out when I was 28, my eye got milky. The "milkyness" spread quickly. As did the tooth loss. Much later that year (29) I go in for oral reconstruction and eye surgery the same week. That "milkyness" was the "protein build up", that if I had a normal eye, would be my eye trying to form new cataracts. Instead it was "hardening" behind my synthetic lens. So the eye surgeon (yes one of the original) made a small incision to allow the protein to drain once he "broke it up" with a laser. It turned out to be far more and thicker than he planned. He had to go in twice. 
 
     A few months after my eye surgery I begin to get black spots. I also begin to get much larger translucent squiggles. We find out the the cells that naturally cover each lens are stripping. The translucent ones are nerve damage. We also find out that the tissue of my eyes is softening and degenerating. We decided to hold off getting my lenses aspirated. Which is the process of removing the black spots. We were worried about causing cataracts in my left eye. Which we don’t want. We also decided that there "might" be an option to make the drain larger in my right eye...  but I had already been through so many surgeries by that point that I would need to heal completely before assessing the "possibility".
 
    My vision in both eyes become much worse over fall and winter 2010 so I make an appointment. I have no focus what so ever in my right eye. It is blurry. Basic shapes, colors mixed with milkyness. That is all. My left eye is has gotten very bad. I cannot seem to get focus very well. I have to get up close and move my head around to get a good look. In any case, I go in for my appointment. There is nothing that can be done. The damage is progressing fast. My left eye is pushed to its limit. Too much nerve damage. It is once again doing all the work for the right eye. Tissue softening in both eyes (normally associated with 70+yr old). Cells are stripping in both eyes. Amblyopia has increased drastically in the right. Increase protein build up. No one wants to make the hole larger to drain protein. No one wants to aspirate either eyes cells. It will cause cataracts in my left eye and my eyes are not strong enough to withstand surgery. My right eye is continuing to try to make more cataracts.
 
    So, I guess that is it. In all fairness my eyes put up one heck of a fight. I just wish I wasn’t so mad. So.. fed up.
 
*hugg*
  dani

TWO roads diverged in a yellow wood
And sorry I could not travel both
And be one traveler, long I stood

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Chartreux
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Date Joined Aug 2006
Total Posts : 9664
   Posted 4/8/2011 9:35 PM (GMT -6)   
Dani,
please, know your one heck of a person and lots of healing hugz coming your ways...
wish I could offer up better advise...wish I knew what to say...
(((((((((((((((((((((((((Dani))))))))))))))))))))))))))))
**********************************************
* So many dx's I could write a book* "It would be nice if we could use the edit button in real life"...
********>^..^<********>^..^<*******

Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 4/9/2011 8:55 AM (GMT -6)   
 
 
     As much as I don't want to admit it, you are all right. In all fairness I knew the "warning signs" that my surgeon told me to look out for had begun in November. I had an appointment set in December but my Father in law had fallen on hard times so I switched my appointment for 2011 so we could give him a few thousand dollars. God knows he helped us more times than I could count. I guess waiting or going earlier wouldn’t have mattered anyway. I was just hoping that at the very least we could get rid of the spots and drain more of the protein.
 
   Really the longer I think about it, nothings changed really. I had already adjusted my life to compensate for the vision difficulties over Christmas. My husband had built me a computer for Christmas and made sure windows was set for larger text. He did the same for my MSN Browser. My Kindle already had the ability to enlarge text and text-to-speech. We even switched to large print story books, but really even the pictures were nicer in the new books. A friend told me there are lights with large magnifying glass attached and perhaps it would help me to still make jewelry. I hear Ipad as a kindle app or even switch to Nook which is full color for story books once the large print books become harder to read. I am sure I will think of ways to adapt to this better.
   
     In all fairness, my eye surgeon tried very hard to warn me I was running out of options last winter. Of course being a woman it was out of sight, out of mind.
  
     Yesterday, while I was washing up towels and rags,  I wrote a history about my eyes. One thing writing about it helped me to realize just how lucky I have been. Things could be a lot worse right now, and I had better not waste my time being angry about it. It doesn't mean I don't need help processing it all. I do. I have had a hard time and need some help. I am very greatful for all of you helping me to remember what I have and that I can adapt, it will just take a lot of work.
 
*hugg*
dani
TWO roads diverged in a yellow wood
And sorry I could not travel both
And be one traveler, long I stood

Chronic Pain Moderator
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momtofourangels
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Date Joined Apr 2010
Total Posts : 2261
   Posted 4/9/2011 10:27 PM (GMT -6)   
Oh sweet Dani. I am so sorry about what you are going thru. This sounds like a congenital thing with your eyes. Am I right? I had so many questions when you first posted about your eyes, but i didn't want to upset you furthere by asking them. Now I can't remember what they were. I sure wish you luck. I say that there's goling to be some way or another for you to do something that will improve you eyes. I am so glad that your husband takes such great care of you. bless his heart. I am still here with my shoulder waiting for you to cry, rant or whatever you need. We are all here for you. You take care. Just look at your bumblebees(that's always been a cute nickname for your girls. I laugh every time I see it. ) and you'll know that you can get thru this.

I love you my dear sweet friend.

Loretta
Dx: osteoarthritis, bursitis in left hip, Osteoarthrits in right hip, compression fracture in thoracic spine due to falling on frozen ground March 2001 , ddd, spinal stenosis, bone spurs, osteoarthritis in spine, osteoarthritis in both knees

damouthy1
Veteran Member


Date Joined Sep 2009
Total Posts : 663
   Posted 4/10/2011 10:59 AM (GMT -6)   
Oh Dani, I had no idea how bad things were getting. My heart breaks for you as well. I am at a loss for words as nothing I can say will make things any easier. Please know we all love you and are so thankful to have you in our lives. You are an amazing lady!
Gentle Hugs,
Shannon

Fibromyalgia, Chronic daily headaches, Migraines, Possible Graves Disease, GERD, High blood pressure, Depression and Anxiety

Oxycontin, Percocet, Lopressor, Lexapro, Omeprazole, Promethazine as needed for nausea, Ventolin inhaler and Vitamin D3

Rhaevin
Regular Member


Date Joined Jan 2011
Total Posts : 230
   Posted 4/11/2011 8:12 AM (GMT -6)   
If possible, Dani, before things get worse.... see about planning a special trip for you and your family. Make as many memories as you can, and live each moment to it's fullest. Please never forget what an incredibly strong, wonderful, caring, compassionate woman you are... even though right now I'm sure you'd like to curl up and cry and scream and throw things in anger and frustration at the injustice of it. My mom always said throwing tuperware felt very theraputic and less chance to damage things.
 
I just wish I could give you a big gentle hug.
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