I'm through with this!!!!

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Scarred_for_life
Veteran Member


Date Joined Jul 2008
Total Posts : 1560
   Posted 9/16/2010 3:58 PM (GMT -6)   
Hey all!  As my topic says I am totally through!  I've been told that I am not a candidate for the SCS by the Psychologist that did the eval!  So I got so mad today when I heard that I decided that I will not be mentioning the SCS ever again!  To those of you who have had successful implants.....Bravo!!!  I am so proud of each of you!  But, this gal is through with the crap!  No more posts about the SCS or the bull I have been going through.
 
Apparently, the psychologist wants me to go through another 2-4 years of pain psych therapy and I am NOT going through this again EVER!  I feel so stupid!  I can't seem to get the tests right so that they actually show how much true pain I am in.  My disappointment has been compared to the psychologists son who in his 11th year of school was not picked for the hs football team.  I have had enough of this!
 
So.....I am off to see a massage therapist and maybe some acupuncture if all else fails.  I'm tired of fighting and tired of crying and tired of being in so much pain that I can barely move.  As the saying goes..."enough is ENOUGH!"  7 years I have been fighting each and every psychologist to get through to the trial and each time, though the doctors that recommended the SCS say it would be a great thing to try, I have been refused by a stupid psychologist that in my own opinion has the power to DENY a patient what their doctor says will help.  Ain't that a hoot???!!
 
So no more....no more psychologists asking me how I feel about this and that....no more doctors telling me that I need to go to therapy....and no more NO's!!!  Stick a fork in me cause I'm done!
 
Hugggss  Hope ya'll are having a better day!
 
Scarred

Retired Mom
Veteran Member


Date Joined Feb 2010
Total Posts : 1753
   Posted 9/16/2010 5:02 PM (GMT -6)   
I'm so sorry scared! I wish I had more energy to post today, but I'm exhausted and I hurt.

I will post more later.

You have every right to be angry and tired of this insanity! I wish I had more to give than that, but what you are going through is nuts and there is NO way to justify what is being done to you!

My heart is with you!
Retired Mom

Tirzah
Veteran Member


Date Joined Jul 2008
Total Posts : 2317
   Posted 9/16/2010 6:24 PM (GMT -6)   
((((((((((hugs))))))))))

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16284
   Posted 9/16/2010 6:50 PM (GMT -6)   
Scarred I don't blame you one bit for feeling as you do. It's like all those idiots have done is tease you from day one with this hoop jumping. Now, like you say you can get on with your life because this very thing has had you in limbo for years. For what its worth maybe this is an omen that it was not for you, I have to believe somewhere in the mix of all of the crap you have done at their request there is a reason we don't know about and I am not talking about the idiot psych dr either. Get on with your life especially the part that has been on hold for so long, go get that nice massage to de-stress with. Hugs, Susie

damgalnuna
Regular Member


Date Joined Aug 2010
Total Posts : 77
   Posted 9/16/2010 6:52 PM (GMT -6)   
I'm sorry you've been put through so much. I wish you luck in finding something that works for you. And you're right, it does seem wrong that a psychologist can deny a patient a treatment recommended to them by their doctor.
Scoliosis fusion w/rods (92); herniated disc (96); partial removal of rods (97); microdiscectomy (97); sudden inc. in pain (08); tried the various non-pharm treatments and currently take the following meds: lyrica, baclofen, vicodin, topomax, tramadol, welbutrin, ativan, ritilin.
I design jewelry to distract myself from the pain: www.beadedrelics.com

golitho
Veteran Member


Date Joined Sep 2008
Total Posts : 1670
   Posted 9/16/2010 6:57 PM (GMT -6)   
Oh Scarred. Big Hug! I really feel for you, I mean how many hoopsdo they want you to jump. It just seems to be everyone is against you when it comes to the psychologists. They get off on their power trips or something?
How incredibly frustrating, whats the bet the next time you see a pain doc they reccommend the implant?
Why do they make it all so complicated?
Sending you an enormous hug, wish I could do more, golitho

skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 3089
   Posted 9/16/2010 7:52 PM (GMT -6)   
((((((((Scarred))))))))))). I still don't totally understand your situation/why WC, etc is making it so hard for you to get an SCS, but I can understand your frustrations. The only last thing I have to say on the subject, is do you have a private insurance that could pay for the procedure -- aka, just screw WC & try to get it approved through regular insurance. Anyways, I can understand you just wanting to end this whole mess now.

Good luck with the massage! I hope it helps. Acupuncture is a good idea as well. It does help many people. Osteopathic manipulation & homeopathics are also things that you might try. However, if you go the homeopath route, I'd chose a homeopath that is also an MD.

hugs,
Skeye

Screaming Eagle
Forum Moderator


Date Joined Sep 2009
Total Posts : 5005
   Posted 9/16/2010 9:09 PM (GMT -6)   
Hello my Kansas friend!

I'm curious!....you are seeing one of the best PM's here in the Wichita area,....are they not able to control your pain levels? Are they involved in this?

Maybe a pain pump is the route you need to look at now. We are all so sorry to hear of your troubles, and hope something positive will pop up.

SE

Scarred_for_life
Veteran Member


Date Joined Jul 2008
Total Posts : 1560
   Posted 9/17/2010 2:38 AM (GMT -6)   
Dear friends;

Thank you all so much for your concerns. Unfortunatly this began 7 years ago and I'm already loosing most of the details in my brain, thank you pain meds uggg. Okay so we started out with my neuro. After the last fusion was as he put it "good to go", no restrictions just listen to my back, I was sent to a pain doctor in Cheyenne. This guy said the SCS was perfect for my situation. Well, of course so did the neuro. I began reading and looking around for any info on this and once I figured I had an informed decision we took it to the next step....an eval.

The first Psych was a joke! All he wanted to do is talk about how his back was sooooo much worse then mine and how I needed to "Use the force, Luke!" to stop it from hurting. He denied that I was a candidate for the SCS. Okay so now we switch to my guy in Billings. WC sent me off for a eval again a year later. This time with one of "WC's own guys". Again.....denied because the testing showed I was not a candidate. But.....there was a bright side. He wanted me to go through counceling and biofeedback. Okay, I did that as well.

fastforward to another day.......KS two years ago. After finding out that no neuro will ever touch my back again even if the one above L-3-L4 herniates, I'm screwed, I was sent to my current Pain doc. No new meds for pain even though I have practically fallen into tears in her office because it hurt so bad.....nope I am on too high of a dosage already. Reason's given for denial of SCS: 1.....unrealistic expectations. 2.......understating her pain. 3.......needs to communicate her pain to others better. 4.....overstating her pain.

Those are the reasons after each SCS psych eval. Does any of it make sense?
I live to "Tame My Pain!" 

Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 9/17/2010 3:20 AM (GMT -6)   
So sorry Scarred :( I can totally understand why you are saying "no more!"..... but I know it's not easy after all you've been through. I hope you will find something else that works for you... I really do. Maybe there's a reason for this door continuing to be shut for you... hopefully it means that there is just something that will work better. I know it's hard to think that way in the midst of all of this... and when dealing w/ so much pain.

My thoughts and prayers are with you... Hugs, Tina
Main Health Issues: Dysautonomia/POTS; CFS/Fibro; Chronic Pain (back issues, migraines, carpal tunnel, among other things); Chronic Hypertension; Hypothyroidism and Hypoadrenalism; Mixed Sleep Apnea (on BiPap); Depression/Anxiety; Vitamin D Deficiency.

MAJOR surprise - Pregnant, w/ twin little girls (after six boys). Due Sept, 2010. Praying they are healthy. YES, you can have chronic pain AND have a successful pregnancy - not easy, but it can be done. :)

Screaming Eagle
Forum Moderator


Date Joined Sep 2009
Total Posts : 5005
   Posted 9/17/2010 7:05 AM (GMT -6)   

 

   Good morning Scarred! If you don't mind, can I ask what meds and the dosage you are on?

   Wichita is getting pretty hard to be treated for pain management here. I'm sure you have seen the news stories on the PM that was convicted recently. My PCD made me sign a contract with him to cover his rear. He trust me, but the state is cracking down hard on them. Oxycontin is especially hard to get from a Dr.

   The clinic you went to only wanted to do epidurals and no meds, and were very rude to me. My PCD office called them, and they got into a shouting match. I saw my PCD just last week, and he says that several Dr are having problems with that clinic.

I don't know what the problem is, but I do know that the PM's are tightening their belts on the meds.

Where will it all end? I'm not sure, but untill then, we will suffer.

   Good luck to you, and I understand you're frustration.

   SE


Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 9/17/2010 9:07 AM (GMT -6)   

 

   Dear Scarred,

   Hey there *warm hugg* I cannot believe the psych did it to you again. It is completely beyond my comprehension. It makes no sense to me why you have to struggle so much to get something that at this point...would cost less than 4 years of evaluations and office visits.

     I want so much to say "Don't give up!" or "You can fight this!" but the truth is, I just can't blame you one bit for giving up. They have wasted so much time and valuable resources. It seems that no matter what you do, there will always be dead ends. At this point you have done all you possibly can, complied with ever request to the very best of your ability... yet the answers are still the same.

     I hope your doctors understand when you tell them you give up on it. Surly they have your history and will know you have done all you possibly can. Unless your doctors come up with an entirely new plan somehow.. I don't see how an SCS can ever be accomplished.

     I am so sorry that you worked so hard. Struggled through each obstacle for so long.. just to have the same result. I wish it had turned out better for you. I wish there were something I could do or say to help. Just know in your heart of hearts that you gave it your very best.

*warm 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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Tirzah
Veteran Member


Date Joined Jul 2008
Total Posts : 2317
   Posted 9/17/2010 12:32 PM (GMT -6)   
Dear Scarred,
Gosh, you just can't win for losing. First understanding the pain, then overstating it. I can't fathom why it matters whether you can accurately describe your pain at all. But like Susie said, maybe it was just Someone/the universe looking out for you. The SCS's have mixed results and some people have to have them explanted they are so awful. Still, I wish you could've had a shot at it.

Have you ever tried a "turtle shell" back brace? I have pain at L3/4, L4/5 and L5/S1. The lowest level is usually only helped by epidurals, but the 2 higher levels were really helped a lot by the brace. When I first got it my NS told me to sleep in it & to try to keep it on as much as possible during the day time -- except bathing and meal times. It's not a forever solution, but it did give me enough nighttime relief to get some much needed sleep (which I imagine you probably are plagued by as well). I would get maybe 4 straight hours of good sleep with it on and some more semi-fitful sleep on top of that. It brought me down about 20% on my pain meds on most days. They're not cheap -- I think mine was $1600 -- but sometimes you can get them used for little to nothing and maybe WC would even cover it without the huge battle. My NS collected ones from people who healed from surgery & were done with them and would resell them for about $200 to those denied by insurance or the uninsured. The only real downside other than the cost for me was that it is hot (mine is wool-lined) in the summertime.

idk. just a thought. I know you've tried so much & I just wish they could find something to make you feel better. Also, I know you probably want to avoid more meds, but when I was having probs staying awake/alert, my PM wrote me for Provigil. It's not as good as sleep, but made a huge difference in the quality of my work & ability to get tasks done. They've got a new sister product "Nuvigil" and a lot of offices have samples but otherwise there's a 7-day free coupon at www.nuvigil.com/pat/wakefulness_resources/7_day_coupon.php.

peace & prayers,
frances

MsBunky
Veteran Member


Date Joined Jan 2010
Total Posts : 1097
   Posted 9/17/2010 12:50 PM (GMT -6)   
Scarred, I just wanted to commend you for having the honesty to say "enough". You've been thru the ringer with the medical system, and it appears no one really wants to treat you appropriately. I would be saying "enough" as well.

I hope you are able to find treatments that might help you. Look into everything - Reiki, Reflexology, Accupunture, Chinese medicine...whatever you think might help. Just try one and see...you may stumble across something that offers some relief, and I sincerely hope that's the case!

Hugs to you,

Pam
DX: Fibro, Severe Myofascial Pain, Chronic Pelvic Pain, Surgical Adhesions, IBS, IC-PBS, Carpal Tunnel (both wrists), FAI, Reynauds, Opthalmic Migraines, Drug Related Hot Flashes, Physically Unable to Vomit due to Nissen Surgery, Extremely tiny and scarred veins (hard start for IV's)

Meds: Oxycontin, Tramacet, Cymbalta, Cesamet, Flexeril, Clonidine plus Vitamin D + Multi daily

White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3694
   Posted 9/17/2010 7:45 PM (GMT -6)   
Scarred
 
I have a question for you. Isn't this a workmans comp case?  Are these Psychologist's selected by you? or your PCP? or by your personal pain Doctor of your choosing?  Or are they selected by the wc folks? I have posted this before, but for the life of me, I do not understand what a Psychologist has to do with anything when is comes tho having an SCS for Gosh shakes, all it is, is an implantable  TENS Unit!!! It is not an narcotic drug or something that is super dangerous or something that is going to alter your mind,  or any other exotic divice!  It is a TENS Unit it electrictly stimulates some of the nerve endings to confuse and block the pain singals.  So pray tell what is the big deal about them that you even have to have a Psych  eval at all? Let alone let them have the power to over ride a Doctors recommendation, and block a person from getting one!  What am I missing or not understanding here????  I know Scarred after fooling around with the TENS Unit, I was offered to try a SCS and I declined! I personally do not want one. But with that said, I do not feel that these Psychologist should be able to  stop a person from trying and getting one either! I was always taught althrough nursing school, never to judge a persons pain!!!,  Pain is what ever a person( patient) says it is!!!! Period end of story!!  Nothing more! Nothing less!! Because as of now we can't read a persons mind or feel what another person feels! We can not feel a persons pain, so we have no idea how bad pain is to another person. and not even a Psychologist  with all their fancy test can determine that! How does she or he know if you are underestimating or overestimating  your pain??? Do they have some psychic, or magical powers that the rest of us don't have? I....Don't....Think...Soooo!!!!!! It is a crock of you know what!!!  Plain and simple!  I think allot of these Psychologist  should go back to doing what they do best, figuring ways for companies to make their advertising and commercials more effective, so we will buy more of their stuff!!!
 
Just my oppinion scarred, but I am sorry for all that you have been through!
 
White Beard
Moderator Chronic Pain
After spending nearly 22 1/2 years in the USAF, I retired in Sept, 1991. I then went back to school and became a licensed RN in 1994, and I worked on Oncology and then a Med Surg Unit, I became disabled in late 1999 and was approved SSD in early 2002!-- DDD, With herniated Disk at T-12 and L4-5. C5-C6 ACDF in Sep 2009, C6-C7 ACDF in Mar 1985, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!) Medications:Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV I am White Beard with a White Beard!

Scarred_for_life
Veteran Member


Date Joined Jul 2008
Total Posts : 1560
   Posted 9/18/2010 2:35 AM (GMT -6)   

Hey everyone.  WB you hit the nail on the head!!!!  Hubby says when the doctor's actually take back what should be their field of expertise then we will maybe look into the SCS again.  But, until then....I'm not stepping foot into another psych office again!!  It's crazy in my mind to have a patient take those stupid tests in the first place!  What do I care if I answer a question like.....Question 476: I would like to be an astronaut. true or false........what the hell does that have to do with anything????  And why should I care?

I asked the psych, through emails that we have been going back and forth with, why would he get an accurate read on my pain from questions like that?  And how, if I answered 3/4 of the questions by guessing, could he get a real good idea about my pain?  And why in the world would you pose questions like.....321: I think most people lie...true or false.  HUH!?

These tests are stupid and totally wrong! They clump people in certain groups together....those that have the personality for the SCS and those that aren't.  Then they decide that the tests are 80% accurete.....ummmmm can my hubby do an 80% work on your JD tractor and you'd be okay with that?  Since when in this world did we say 80% is okay with us?  Why not just slice my spinal cord and put me in a wheelchair.  I'd have better luck with not having any feeling in my legs then to see any more of these quacks!

Okay, off my soap box LOL!!!  I think I've ranted enough.  Besides its 3:34am and I'm wide awake.  Just trying not to wake up the hubby and thinking on throwing a movie in.  Ahhhh the life of a CP'er huh?

 

Hugsssss to each of you.

Scarred


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16284
   Posted 9/18/2010 4:57 AM (GMT -6)   
Scarred I think I read here that you have been on the same pain meds for three years is that correct? Are your meds taking care of your pain pretty much or have you found them not to be so effective? If your pain is not under control why will your dr not change your medications up to find something better. Has she not heard of tolerance to medications? My current PM dr was floored when she saw that my prior PM dr never one time in 2 years changed my treatment plan up at all and my pain scale was a consistent 9. This was what she saw when she reviewed my medical records prior to deciding whether she would take me on as a new patient. She said I was not receiving proper PM care to have been left holding the bag like I was.

When do you see your PM dr again? I do hope now that this has been settled over the SCS she will want to help you out.

Susie

tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2024
   Posted 9/18/2010 12:13 PM (GMT -6)   
Dear Scarred
Just wanted to add my thoughts and prayers for you. I know it must be so tough as I too have tried everything on the list for my pain and nothing works. Although I have not done the testing like you have but I see by what you are saying, the questions just don't make sense and don't say anything about your pain. I am so sorry things are so rough for you. Take it one day at a time and remember to take care of you!!

Hugs

Post Edited (tmjpain) : 9/18/2010 12:32:18 PM (GMT-6)


Pete trips again!
Veteran Member


Date Joined Nov 2006
Total Posts : 1899
   Posted 9/18/2010 12:26 PM (GMT -6)   
Hey Scared, So sorry I'm late on chiming in!! Those docs and shrinks suck! I've had so many that I've lost count that just didn't give a dam about people like us! Screw them! Sorry to be so blunt but they really piss me off! Why does it have to be this way??? What happened th Macus Welby M.D.???????
Hang in there Lil Sis!
Hugs,
Pete
When I was young & stupid I broke almost every bone in my body and I'm paying a heavy price now but I'm still here and so glad to see my two sons grow up to be fine young men, both are in the Navy. I'm so proud! My biggest health problem>> I'm a certified Luny~Tune!!

flower123
Veteran Member


Date Joined Apr 2009
Total Posts : 856
   Posted 9/18/2010 12:47 PM (GMT -6)   
Hi Scarred. I'm late to replying too. I'm so sorry that they put you through all of this. It upsets me so much that some doctors have NO IDEA what it is like to be in pain all of the time.

I'm going to echo what Straydog said. Why can't your doctor change or increase your meds? Can you talk to him about that?

Thinking of you.

Hugs,

Flower

Scarred_for_life
Veteran Member


Date Joined Jul 2008
Total Posts : 1560
   Posted 9/18/2010 6:42 PM (GMT -6)   
Hey Stray sis! Yeah its been about 5 years since I've had a med change! Impossible so far to get them to change them up since she seems to think that I am on a much too high dosage of Kadian (morphine) and refuses to fix my now increasing pain. Today was a horrible day! Pain is at a 10 and I am laying here in my recliner wishing that I could just stop this insanity. So now I'm forced to think of other things to try and get the pain down. My massage therapist is doubtful that that will work but we are going to try it on Monday. Never been through a massage excpet by hubby who doesn't really get to the good spots.

Sometimes I so truly wish we could all go back to the way it was before we were in pain.

Hugggggs

Scarred
I live to "Tame My Pain!" 

Riccardo
Regular Member


Date Joined Mar 2010
Total Posts : 36
   Posted 9/18/2010 7:03 PM (GMT -6)   
Dear Scarred:
 
Please believe that I  feel for you.  I went through the same hoops.  But let me tell you that they finally installed the SCS, and it didn't help at all.  In fact, I am about to have it removed since my second opinion surgeon feels that it is what is causing the pain inside my back!  So, go figure.  I know we all want something concrete to fix our pain.  I have read so many stories here on Healing.Well, and that's what I seem to glean from so many posts.  I often feel I am at the end of my rope and that I would like to jump from my 15th floor window, but I refuse to have that be my legacy.
 
I pose this question to you.  Do you, or anyone on this site, have ideas as to why we are faced with these hideous problems?  Is it some sort of Kharma?  Is it God testing us for our ultimate journey?
 
Sometimes I feel so sorry for myself, other times I just cry and say "Why me?" 
 
Ultimately, reading these posts help me enormously.  So Scarred, please realize that what I am trying to say is that the SCS may not really be the solution.  I can tell that you are a very intelliegent person, and I think it is unconsionable that some "professional" is trying to tell you how to live your life.
 
I care.
 
Riccardo

Scarred_for_life
Veteran Member


Date Joined Jul 2008
Total Posts : 1560
   Posted 9/19/2010 12:51 AM (GMT -6)   
No they did not even do the trial....this was just For the trial! I got to thinking about my pain medication delema and I am wondering what I am going to do if she won't change my meds around. What do you all think I should do? Should I keep going there? Or should I look into a new pain doctor?
I live to "Tame My Pain!" 

Screaming Eagle
Forum Moderator


Date Joined Sep 2009
Total Posts : 5005
   Posted 9/19/2010 2:07 AM (GMT -6)   
Hello Scarred! I sent you a PM (Private Message) with a suggestion for a PM here in this area.

There are several in this area, and the one you are going to, was supposed to be the best, but there have been many complaints about them as of late.

I don't know what your dosage is or if you have tried other meds, but surely there is someone here that can help you.

I'm beginning to think that if your current PM is unwilling to work with you and at least look for another solution, it might be time to go elsewhere.

As I had said before, when I went, they treated me like I was a criminal, and I was madder than a hornet when I left. The PA there was an absolute SNOT!

I was only taking X4 Percocet's a day when I was sent to them, and was in terrible pain. My PCD called their office, and the fight was on! Our Dr is considered the Dr Oz in this area, and has a wonderful reputation.

My sister also went to the same PM as you are going to, and all they wanted to do was give an epidural, and no other meds as well. She has since then had a fusion of the lower lumbar such as mine,
and currently receiving her meds from her surgeon. She also has some nerve damage, and is worried that she will have a hard time getting meds when her Surgeon stops providing them.

It is a mess all across this country for many that need Pain med care.

I also have a friend at work that is going to the KU med center for his pain management, but that would be quite a drive for you.

I hope this all works out for you, and feel for you.

Take care,

SE

Post Edited (Screaming Eagle) : 9/19/2010 2:27:34 AM (GMT-6)


Scarred_for_life
Veteran Member


Date Joined Jul 2008
Total Posts : 1560
   Posted 9/19/2010 2:49 AM (GMT -6)   
Thank you Screaming. I will keep that in mind when I go to see the PA next month. I am planning to tell her that I am done messing with trying to get SCS. Its just not going to happen and I have faced that fact. Then we are going to talk about my meds. They recently switched me from Percocet 10/325 because of the liver being elevated and placed me on Roxicodone. To tell you the truth, I rather like it. It seems to bring my out of control pain down a notch or two and that helps. But, that is my BT meds not my long term pain meds.

I was put on Kadian 200mgs 5 years ago and I really think that is titrated in my system for too long. I take 2 a day and she says that is a way high dose. They won't even try something different for sleep. She says they don't usually perscribe sleep medications. Gosh, I hate to think that a whole bunch of people are not sleeping well.

Oh....and I was told that they do random drug screens and that everyone has to do 4 a year. However.....since I have been with them.....I can't remember a time I haven't done a UA. Do they not trust me????? I see her once every other month and the nurse the month in between and for me that is a lot of gas money. But, if that what they want....okay. I'll do pretty much what they ask me too.

Hugggsss

Scarred
I live to "Tame My Pain!" 
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