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Mrs. Dani
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Date Joined Jun 2009
Total Posts : 2787
   Posted 10/2/2010 10:05 AM (GMT -6)   
 Friends,
 
      I have been in Physical Therapy for over a month now. It is a lot of hard work. I now have a 45min program I do at home with my hips / legs using straps, rods and hard foam squares. I am supposed to be doing the "home program" 2 times daily. I haven't been doing as I was told. I have only been doing it once a day except on Wednesdays, Saturdays and Sundays I do 2 times. When I mentioned this to the physical therapists they seems genuinely happy about my progress. It wasn't the reaction I was expecting. I was obviously slacking off. Instead of getting the firm words of warning I was looking for, to help get me back on track.... I received words of encouragement and a green light to continue doing the home program as I had been doing it the last three weeks. They went on to tell me they are very pleased with my progress and can tell I am working on my program at home because of the swelling and less shaking. I am unsure why having a swollen right ankle and swollen / hot to touch left hip are good but they seem to know what they are talking about.
 
     While I am at my sessions, so far, I am given much more time than my appointment slot. Anywhere from 1 and half to 2 half hours. My allotted time is 30 mins. I think. I couldn't afford to go for as long and as frequently as they originally wanted. So far, I haven't been charged extra nor has my insurance been billed for the excess. The majority of the time during sessions is spent in odd contraptions designed to "build up muscle" in my left hip. They keep saying "Before your assessment in October". They are referencing my appointment on the 6th. They have to hold me up during much of the exercises as I have no balance. It is embarrassing that I have to be held up by my hips and under my arms. I know they don't mind but.. I just feel so ashamed that I can't make my body do what I need and want it to do. When I asked if these stretches and contraptions would ever get easier or if I would ever get my balance back I was told quite plainly "no".  I always knew, in my heart that I would never get my balance back. That I would never walk normal again. Still, it hurt to hear it said out loud. Each time I ask "Why we have to do this" I am told same thing over and over "Get ready for your assessment in October". To "Build up as much muscle as we can in your left hip before your appointment". With the constant reference to my appointment on the 6th, I must admit I am rather anxious and nervous now. They are all very kind and gentle. I hope I didn't portray them otherwise. They all genuinely care for me as a person and it is clear they want to help. Their concern is very evident. I have the "Department Lead" working with me as well as his assistant. They took some sort of class recently and have me doing the oddest exercises with belts at home as well as in the session. All the while adding more and more as I get to where I can do each new one efficiently. I am now down to only 45 mins for all 28 modules of my daily at home program.  I am very discouraged as I don't have the balance needed to do it as efficiently as I would like. Also, it is uncomfortable having someone constantly holding my hips. My hips are so hot and tender these last few weeks. My left more so than the right. The right is one that tilts up and to the rear, into my ribs.  My left is the one being crushed by my torso and pelvis as my spinal deformities progress.
 
    I am unsure and frankly anxious as to what will happen during my appointment on the 6th. Will it be more images? More measurements? More or less medicines? Will we delve deeper in the Surgeons? I was given a LARGE list of things to do and people to see at our last meeting. I have done all that has been asked of me to the best of my ability. My balance is getting worse. My secondary compensatory curves are hurting quite a bit. My primary progressive thoracolumbar levoscoliosis doesn't "seem" to me to be getting worse, but I am told I am looking worse. I suppose it could be that I am just looking at myself daily and do not notice? I have no idea if there are even any "visual" signs to tell me if the lordosis is doing, but I am sure they will want to look into that. I am unsure if I have lost any more height as I have avoided measuring my height the last 2 months. The pain, with all my meds, is about 5-6 in the morning so that is still much better than my usual. Afternoon to evening transition is moderate at about 7-8 level. All of which are still better than my "normal". Sleeping however is ..tricky again. I am going down for 3-4hrs still. Only difference is that I am waking 10+ times per night again. It was hard at first, but I quickly slipped back into the sleeplessness. Funny how we can become accustomed to such things so easily.
 
     Inside I am anxious. Scared. I know I will face anything the best I can.... I just wish at times I was.. better, stronger. In my heart I wish there was something we could do to stop and slow down the progression.. but on the other hand I know what my only option left is. Gosh, I just do not think I can afford surgery.
 
     ...I am so glad it is nearly time to make chocolate baskets. Lights and cinnamon apple. Crisp mornings and slow cooked soups. Early morning wake-ups from cold and giggly noses and toes. Gosh, I love Fall & Winter.  Thank goodness I can enjoy these things during such an uncertain time in my life.
 
*warm 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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MIKEL99
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Date Joined Feb 2010
Total Posts : 914
   Posted 10/2/2010 10:28 AM (GMT -6)   
     Dearest Dani Girl , You are so incredibly brave and sweet , its no wonder that your getting so much attention and you desrve every bit of it and more . People spend time with you because your who you are and they are good , dedicated professionals as well . I wish there was some way to make this better Sweetheart , your so good and such a great friend . As usual your handling this with grace and maturity , but I hear the fear of uncertainty in your words and who could blame you for that , the courage you display on a daily basis is incredible . The only thing I could say is to ask straight out whats going to happen at this big appt your having on the 6th of  October , they can't refuse to tell you . I don't know how swelling can be good either Dani that doesn't sound right . But of course I wish you every good luck and I'll be praying big time for you , I love you a lot my friend , please continue to do your best , your absoloutly worth it !!! Mikel
HIV+. meds - epzicom, Kaletra . oxycontin as needed , indothemiacin . hip replacement surgery done !!! Staples out , saw the surgeon he says I'm healing really well , I go back in 2 months . Until then its physical therapy galore !!

Post Edited (MIKEL99) : 10/2/2010 9:46:57 AM (GMT-6)


flower123
Veteran Member


Date Joined Apr 2009
Total Posts : 856
   Posted 10/2/2010 10:37 AM (GMT -6)   
Dani,

I want to say that you are such an inspiration to me. You are so amazing Dani.


I'm sorry that there is so much uncertainty about your next assessment. I am praying for you. I know that you will get through this. It's great that you have things to look forward to--like fall, winter, and chocolate baskets. Sometimes, when I am anxious about things I try to do something for myself. Even if it's something little, it usually tends to help relieve my anxiety even just for a bit. I know that everything is so very hard right now and please know that we are all here for you.



Hugs,

Flower

antbuggey
Veteran Member


Date Joined May 2010
Total Posts : 594
   Posted 10/2/2010 2:16 PM (GMT -6)   
Dear Dani,

Oh sweetheart, how could you say "at times you wish you were better, stronger"? You are one of the strongest people I know and truly an inspiration!!! I wish there was something that could be done to stop or slow down the progression also or I wish I had the money to pay for your surgery.....because I would! You are such an inspiration to me that I wish there was something I could do to help you in return for how much you help me!

Please know that we are all pulling for you and praying for the best! Hang in there hun!

Take care of you,
Hugs,
Beckey
Spinal Stenosis L3/L4, L4/L5 & L5/S1 with Nerve Impingement, Fibromyalgia, TMJ, GERD, Severe Depression, VERY Large Cyst Right Ovary causing mild twisting, Small Cysts Left Ovary & 3 Large Cysts Uterus and Possible RA

Medications - MS-Contin, Cymbalta, Famotidine and currently Prednisone

Retired Mom
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Date Joined Feb 2010
Total Posts : 1753
   Posted 10/2/2010 9:29 PM (GMT -6)   
Dani,

I'm so sorry I didn't take the time to respond sooner. I always find such inspiration from your words and you insight. You have so much going on and to have such a quick progression of your symptoms is heartbreaking. I'm proud that you have been able to do as much as you have and I hope and pray you will find positive results from your appointment and from all of you efforts.

I wish there were a way that I could help you in some way, but I can't find words to give you relief from your pain and your challenges.

I pray you will have the miracle you so despirately need.
Retired Mom

damouthy1
Veteran Member


Date Joined Sep 2009
Total Posts : 663
   Posted 10/3/2010 9:39 AM (GMT -6)   
Dani, everyone before me said it all. We all love you so much and you do inspire each and everyone of us. I am so sorry you are having such a rough time right now. Please know that you are in my thoughts and prayers everyday, I wish I could offer more. Love you bunches!
Gentle Hugs,
Shannon

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

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

MIKEL99
Veteran Member


Date Joined Feb 2010
Total Posts : 914
   Posted 10/3/2010 10:38 AM (GMT -6)   
Hey Dani Girl , I had to write again to you , you've been such a great influence to me since I came to HW , I just want you to know how often I think of you and your family , I beleive that they will have something good to tell you at this appt and that may be why they are bieng somewhat elusive , keep the faith my Sweet and don't stop beleivin , miracles happen and I'm the proof . I'm praying for you and I beleive in you and a positive outcome for you !!! Mikel
HIV+. meds - epzicom, Kaletra . oxycontin as needed , indothemiacin . hip replacement surgery done !!! Staples out , saw the surgeon he says I'm healing really well , I go back in 2 months . Until then its physical therapy galore !!

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9664
   Posted 10/3/2010 11:10 AM (GMT -6)   
Dani,
I will be hoping that what is happening is a good thing...
Keep us posted as to what happens at your appointment...
Healing Hugz
(((((((((((((((((((((((((((((Dani))))))))))))))))))))))))))))))))))
hugz
**********************************************
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc (Lower Lumbar S1-L3 and Cervical C5,C6, C8 and T1), Fibromyalgia, Gerd,
Enlarged Pituitary Gland, Sjogren's, Ocular Migraines, mild carpel tunnel, ect.... "Would be nice if we could use the edit button in real life"...

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

skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 3089
   Posted 10/3/2010 10:30 PM (GMT -6)   
(((((((Dani))))))). My eyes are going & I didn't get to read through your whole post, but I just wanted to send you some hugs & encouragement. No matter what, we are all here for you! You'll get through this!

more hugs,
Skeye
....chronic eye pain, depression, and anxiety
....recently implanted with a neurostimulator with leads on the supraobrital & infraorbital (ophthalmic) branches of the trigeminal nerve, resulting in a 50% decrease in pain (yippee!)

Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 10/4/2010 9:57 AM (GMT -6)   
     Thank you all so much for lifting my spirits. I am just so confused and frustrated by it all. I mean, this time last year all I wanted was a surgical cure, a correction. Something, anything. Now that we have to move and everything else is so up in the air I dread it like the plague. I know we cannot afford it right now. Probably not until the end of next year.
 
     Oh a more brighter note.. I don't know if any of you remember but I needed some "genetic panels" done to get closer to the "Adult onset Idiopathic" diagnosis (they do have a few more test they want to run I think). The panel cost 4,500 that the insurance refused to pay. Well, the insurance decided to pay and I now owe 450.00. I do not know what my doctors office did different. I do remember them calling and asking if they could release certain types of information and I had said yes of course. That I already sign a release at the beginning of each year. The nurse had said it was different, was to go to a "board meeting" of some sort. In anycase, 450 is far better than 4,500. I will take my little blessing (this case large) and be very greatful.
 
*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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MIKEL99
Veteran Member


Date Joined Feb 2010
Total Posts : 914
   Posted 10/4/2010 10:52 AM (GMT -6)   
    YAY!!!!!!  You see Dani Girl good things happen for good people like you !! Thats awesome , 450.00 is way better than 4500.00 !!!!  I have faith you'll get whatever you need Dani , because you deserve every break possible , I 've been praying so hard for you and theres our first answer !!! Its so great , don't stop beleivin Dani everybody loves you and we're prayin' hard and your caregivvers are obviously working hard to make good things happen !! Wow ! That made my day !!!  Mikel
HIV+. meds - epzicom, Kaletra . oxycontin as needed , indothemiacin . hip replacement surgery done !!! Staples out , saw the surgeon he says I'm healing really well , I go back in 2 months . Until then its physical therapy galore !!

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9664
   Posted 10/5/2010 4:59 PM (GMT -6)   
Dani will be thinking of you and you'll have to let us know as soon aas you can
about hoe tomorrow goes...
Prayers and Hugz
((((((((((((((((((((((((((((((((Dani))))))))))))))))))))))))))))
hugz
**********************************************
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc (Lower Lumbar S1-L3 and Cervical C5,C6, C8 and T1), Fibromyalgia, Gerd,
Enlarged Pituitary Gland, Sjogren's, Ocular Migraines, mild carpel tunnel, ect.... "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 10/5/2010 11:41 PM (GMT -6)   

 

   Today was my last day in Physical Therapy. I have been released as having "achieved the outline" that was laid out by my spine specialists. I think I only need "check-ups" to make sure I am on track sporadically. Everything that I am currently doing.. IE My new "daily" exercise program. Is right on target and they are now a part of my everyday life.

     He said there were a number of problems that he is going to high light in his report. My balance, of course. My walking, I already knew that. So did the specialists. He has to report about the increase in my primary curve and the progression of my compensatory curves, again I knew that. The constant swelling in my left hip is showing that the joint is no longer able to function properly. We just weren't able to achieve anything with my left hip. It doesnt have much space due to the deformity. What he told me next was a .. concerning. He and the specialists had eluded to it before though last month.

     I have what they are calling "Neurologic" symptoms. "Distress symptoms". These little sections of my spine.. I would say little 2 inch radius circles around my lower lumbar spine "quiver" all the time. Right up next to the spine itself. It is really quite annoying. With every part of my back and hips on fire and burning at the end of the day, I just never thought much of it. The deep "Itching" is apparently a "neurologic" symptom as well. As are the "Ice" sensations near my groin and upper thighs. Numbness is increasing in area sizes and duration (2 days most often) down both legs. He seems the most concerned over the "quivers" along my lower spine. He said he was going to stop by and talk with them about it today.

     I really hope that the spine specialist are satisfied with my progress tomorrow. I hit the ground running and worked hard to achieve everything that has been asked of me. So, we will see what happens.
 
*warm 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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tmjpain
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Date Joined Oct 2008
Total Posts : 2024
   Posted 10/7/2010 3:42 PM (GMT -6)   
Dear Dani
I was thinking of you and wondering how your appt went. Please know that we all love you and pray that you are ok!!

Big hugs
SUZANE

One day at a time!!

Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 10/9/2010 12:39 AM (GMT -6)   
Friends,

    I had my appointment with spine specialist on Wednesday. We went over my physical therapy. She wanted to see me walk. She is pleased with progress on my walk. It is only moderately painful to walk now. It is more than she expected. She was pleased with my progress but still concerned that I cannot walk without pain and limp/rotation up of my right hip. Wanted to see me try to balance my weight on the heels of my feet, then on my balls / toes. Both times I stumbled, fell and couldn't do it. My balance is a problem that will not get better no matter what I do. It will get worse as my spinal deformity progresses.

     She said she was extremely pleased with the physical therapy and my new life changes. I did tell her the same that I told both physical therapists. That I have tried hard to do twice a day but in the end I seem to only be able to manage once a day except on Wednesdays, Saturdays and Sundays when I can do 2 times a day. Again, I was told the same exact thing word for word that the physical therapists told me. "We say twice a day in the hopes you will at least do it once a day at home. You have exceeded our expectations. You are proof of what physical therapy can do when it is done correctly. We are all very pleased with your progress and please continue doing exactly as you have been." She did go in to what "usually" happens when patients are sent to physical therapy. It was like she had memorized what the two physical therapists had said word for word. They send patients down and the only time the do their "modules" is when they are in the physical therapy center. I find that highly unlikely Who would waste time and precious resources to turn around and not do what they are supposed to do?

     She and the Team Lead are concerned about "neurologic" symptoms. Concerned about my balance and visual signs that I am progressing despite my best efforts (trust me I am working really hard to do everything I have been asked to do). The endocrinologist has cleared me. The physical therapist has cleared me. All the other specialists have sent "great reports regarding your progress.".

    I can "enjoy your holiday with your babies." "You've earned it. Spoil your angels." and that "we will pick things up and begin images and consult in January." "I have to say it, you are my star patient. I wish I had more like you. You are proof.". I couldn’t even look her in the eye at that point. I was sure I was beet red!

     So, I am stable enough to seek surgical help. I am a candidate now. I am also "stable" enough to have a holiday with my family "unless something happens or your have a pain spike please do not wait. Call me. Don't Dont wait. We will take care of anything that comes up."  I do have to continue my medications at the same rate. I knew that. I do have high pain spikes still, like today. I have been on the verge of vomiting all day. I hate that I am still stuck with the pain & muscle relaxer combos. The.. "fogginess" wears me down sometimes, but I just do not want to go any higher unless I have no choice. So, for now, I will tuff it out.

    In January we will x ray the length of my spine. Measure the cobb angle of my primary progressive thoracolumbar levoscoliosis. My secondary thoracic Dextroscoliosis. See how much my compensatory tilt has progressed / check on the degeneration in my cervical area. I am not sure what to expect at that time. I know there is damage to my spinal cord and narrowing of space and discs space as well as permanent damage to many of the vertebra. It It is all "normal damage" for people who have a progressive spinal deformity. Also, no more "testing". After two full years of blood work and genetic testing I am "Adult Onset Idiopathic"... which is fancy talk for "we don't know". But, on a much brighter note, the statement "we don't know" only cost $450.00 for the last and final genetic test. Not $4,500. With a little luck and a lot of prayer hopefully I will be in a position to financially afford to consult a orthapedic surgeon / can make it until then before anything major happens. 

    Something else happened that was very unexpected. The nurses all admire the jewelry I make for the girls (I've never worn my own jewelry as I have metal allergy). Last time I went in the girls were wearing their "Birthday Watches" and I was asked to bring in some adult jewelry. So, this time I brought an adult set made from Jasper and Swarovski Crystals. The ladies were ecstatic and praised my work. Gosh it felt so good! Later when I came home I was so sleepy! It was like someone bonked me over the head with a sleeping stick. I went to go lay down. When I woke up David told me that the nurses called and wanted me to stop by with some adult jewelry sets that are for sale. Can you believe it? I of course said yes! Then today another one called and wanted to know if I had anything in the 25 dollar range. She didn’t even SEE my work! I said of course can we see all of your together? So, it looks like next week I have some jewelry sales.  

     I see my propensity to write a large novel hasn't changed, so I will end this hear. Thank you all for being there for me. It means a lot to me.

*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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Áthas
Regular Member


Date Joined Aug 2010
Total Posts : 55
   Posted 10/9/2010 1:58 AM (GMT -6)   
Dani, I admire you so much. You still always manage to sound positive in some way and apparently, you're working really hard. And you're so brave. I just wish you weren't in so much pain, though. I wish it would get better. I haven't been on here much because I didn't have much time for the internet, but I've been thinking of you even though I don't really know you.

By the way, are there photos of your jewellery somewhere? My boyfriend used to make jewellery, he studied it at university, but then made props for movies and theater for years. I always find it fascinating when people make their own jewellery.

Pete trips again!
Veteran Member


Date Joined Nov 2006
Total Posts : 1899
   Posted 10/9/2010 5:22 AM (GMT -6)   
Dani, I'm so proud of you! All your hard work seems to be paying off! You are my hero! That is so cool about the nurses and your jewellery!! Congrads and keep up the good work!
Much Love and Big Huge Hucs!!!
Pete
PS> So sorry I haven't been around much!
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!!

solar powered
Veteran Member


Date Joined Nov 2007
Total Posts : 538
   Posted 10/9/2010 10:43 AM (GMT -6)   
Dani, thanks so much for sharing the details of your dr's appointment. You seemed so concerned about it but it sounds like it went well and the dr was pleased with all your hard work. Good for you. You should be so proud of your effort to take control and improve your health situation. You, your good attitude and hard work are an inspiration for all of us here. I wish only the very best for you, Lisa
If I can laugh at it, I can live with it.

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9664
   Posted 10/9/2010 1:34 PM (GMT -6)   
Dani,
Ya know I'm proud of you, but it's like what the heck with all the doctor said...geezee..
I agree who would go to physical therapy and not do their exercises...why waste the
co-pay...I even have my own recumbent bike and I use it at home, on Mondays
I ride it over over 5 minutes...I hope the nap helped...good luck on selling the jewelry..
Anyways I hope you get low pain days...
((((((((((((((((((((((((((((Dani))))))))))))))))))))))))))))
healing hugz
**********************************************
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc (Lower Lumbar S1-L3 and Cervical C5,C6, C8 and T1), Fibromyalgia, Gerd,
Enlarged Pituitary Gland, Sjogren's, Ocular Migraines, mild carpel tunnel, ect.... "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 10/10/2010 10:37 AM (GMT -6)   
 
   Thanks so much. Yes, I was grateful for the encouragement. I had worked really hard to make the life changes. At first I though "Oh yea this is easy!" But soon found out it was much harder than I originally thought.
 
    Hearing about what "Usually happens with patients" at first I thought you have got to be kidding. But the physical therapists, then the specialist and nurses. Even a friend emailed me the other day and mentioned the exact same thing. All I know for sure is that I worked very hard and my walk looks more "smooth" it is more of a lift and rotate. I do not look so awkward and it hurts far less to walk now. I know for sure my walk looks better everyone has commented on how good I look.
 
    Yepp, the doctor had grim news with regards to my progression. I think that the physical therapists tried to "soften the blow". So, by the time we went over my progression / symptoms it wasn't that big of a deal. I had already heard it before.
 
     All last year, all I wanted as far as my progressive spinal deformity was a surgical fix. Something, anything. I was told "No. Not at this time." repeatedly. Now that I am healthy enough, and am diagnosed as "Idiopathic progressive" with my spinal deformity & bad enough to warrant surgery, I was worried I would be rushed into it before I was ready. Right now, my financial problems are a bit large, it is close to the holidays and it just isn't a good time. I think I am ready "emotionally", well at least I think so at any rate. I think my doctors understand me and what my priorities are. Now, if something more urgent happens, well then we will deal with it when it comes. Right now, I can enjoy my holidays but things are progressing rather fast and I do need to seek a consult as soon as the new year is here.
 
     It has been a lot of ups and downs these last few months and one thing I know for sure is that I am so very grateful for all of you.
 
*hugg*
  dani
 
  Oh yes and Athas, yes. I have many pictures on my jewelry. Do you use Facebook?

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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