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Thread: Jonathan Received His Wings Today

  1. #21
    Distinguished Community Member nuthatch's Avatar
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    Dear Rose,
    My heart just breaks knowing how much pain you and Jim are going through. I knew nothing of this painful turn of events in your already challenging life until tonight, when I asked about you after missing your ever upbeat, kind and supportive posts on the MS forum recently. I am so sorry for your loss. Please be kind and gentle to yourself and your dear husband as you both grieve and then regroup to carry on. I know two angels will be watching over you and doing their best to lighten your load.

    Lots & lots of hugs.
    Joan

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  3. #22
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    Rose I am in shock, I am so truly sorry. I sobbed. I don't know what else to say except you are all in my prayers.

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  5. #23
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    Rose,
    You took such good care of Jonís body and his soul, you are truly Godís Angel. Let friends and acquaintances take care of you as you move into the gauzy fog of grief. You, who take care of everyone , including many of us, must allow your community to take care of you in the coming several months.

    You are no stranger to grief...you may know this path well, but it each grief path, or, really, field, has some differences...

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  7. #24
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    Rose, I am so very sorry and I extend sympathies to both you and Jim as well as Jon's entire care team.

    Your life has lovingly revolved around your two beautiful sons for so long, I'm sure you feel completely out of sorts, in addition to dealing with your loss.

    I hope you will take at least a day to completely rest and turn off your caregiver role. It is time for you to take care of YOU for a bit, and be simply a grieving mother without making a single managerial or caregiver's decision.

    Please let others give to you and take some time to sleep, to walk, to listen to music, to eat well, to just take care of you.

    This is such a dramatic change in your life, I'm sure a shift is very difficult and that it would be too easy to continue in your 'take charge' role.

    I hope you can take some time to rest, just be a mom who lost her child, and take of you. It's truly time that others looked after your needs as you mourn the loss of your beautiful boy.

    Sending you much support and condolences, thank you for sharing your journey with Jon with all of us.

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  9. #25
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Default Overcoming Being Overwhelmed



    ((((((Hugs to All)))))) ~

    Thank you all so very much for your condolences, prayers, and love for us. We are so grateful to you for traveling beside us on our journey and lifting us up, when we are struggling.

    JIM

    I stayed with Jim again last night until about 2:30 a.m. Jim had slept well on his side for the first time in days. The recliner is just not working out for me, as it seems to create pressure on my right side/back, where I laid on the floor with Jon. I canít keep trying to sleep in the recliner, if itís going to exacerbate that pain.

    Jim woke up at 3 a.m., as I just climbed into bed (seems a pattern here, eh?), so I went down and got him repositioned, checked his output, told him to drink more water. I then went back up to bed, awoke at 7:30, and went down at 8:00 after heating up my back. Jim had not fallen to sleep again.

    At least as far as he can remember. He doesnít realize that he is sleeping now. He dozes on and off.

    Cath change, new drainage bag (infection protection), breathing treatment, breakfast (I had a good breakfast today as did Jim), tea, reminding Jim to remain straight in the bed and not lean to his right, taking his SATS, adjusting O2, How many times have I found him with only one cannula in his nostril, the other on the side of his nose? Or on his chin? etc. etc. etc.

    THE URN SEARCH

    Donna and Tracy are helping me find the urns I want to use for Jon. I want Jonís urns to match Michaelís urns. So, we communicated via email today.

    Jon gave me his first sign today, when the ďEnd of the TrailĒ popped into my head.

    I searched that and found that urn, but the one I need is ďWarrior.Ē Turns out this Lakota Sioux tribe also had that urn. Itís different than Michaelís in color. But it suits Jon as does Michaelís. Bold for Jon and demur for Michael. Additionally, Jim is fascinated by the Lakota and has studied them extensively. He reads his favorite book about them often.

    As it happened, Donna found the same urns on a different website.

    Thank you so much, Donna and Tracy, for helping me.

    BACK TO JIM AND THE O2 CONCENTRATOR

    Then Nurse Nancy called needing information about Jimís supply needs to submit her evaluation of Jim to the agency admitting him for service.

    That brought up the whole Jim having his own O2 concentrator debacle, and Iím losing it over this, because this is ridiculous. He has Stage IV LUNG cancer, COPD, and dozens of other problems. He needs a blasted O2 Concentrator! Why must I fight for this?!

    Since Dr. H retired, Jim doesnít have a pulmo, and the one, who saw him in the hospital didnít think he needed O2 at home. Well, Iím not a doctor, but I know that he needs it, and so does Nancy. Dr. K says itís out of his purview.

    So, I emailed Dr. A, our PCP for 20 years today begging him to help us. Just authorize an O2 concentrator for Jim like you did for Michael and for Jonathan all of these years. They didnít have a pulmo either. Or a neurologist. Dr. A and I handled all of that, with Nancyís help.

    I closed my email with, ďWe are exhausted and grief stricken. Please help us.Ē

    HOW THIS IS AFFECTING ME

    You know, our son just died. He JUST died, not a week ago, two days ago. Why do I have to be in charge of getting what Jim needs to keep him alive?

    Iíll say it to all of you, as I did to Jim today, ďI am not ready to lose you too.Ē

    I donít think I could take it, my friends. I am dealing with trauma, of a magnitude that I cannot adequately describe, watching Jon receiving CPR, laying on the floor, the police, everything. I am so bereft, I can barely deal with it, so I just have to set it aside.

    Jonís chart is still on the dining room table, and on top of the chart is the bag with Jonís locks of hair. His meds are still on the kitchen counter. I threw out his water pitcher today. I washed his Elton mug, in which I kept his G tube and med syringes, in the dishwasher.

    And all of you so want me to rest and take care of myself. Clearly, Iím doing the best I can in that regard, but Priority #1 now is Jim. I do not have the option of not taking care of him. Iím terrified of germs for him, so having others here to care for him isnít feasible, if I could even find someone to fit that description. Nancy canít do it. I canít even get a concentrator for Jim, so I canít imagine finding a caregiver. Most of all, Jim doesnít want that.

    MY WALK

    I did take a walk this morning. It was painful, as my RA is flaring, of course. But I knew I needed fresh air and the gorgeous weather, sunlight, and blue skies for strengthening. As I reached the overlook of the golf course lakes, my favorite spot, a group of about 10 men on bicycles came streaming past me on the sidewalk. (I was on the grass.) They came in 2-3 men spurts. Every one of them said, ďMorning!Ē to me.

    I had my back to them, so finally I said, ďHow many of you are there?!Ē

    The last man said, ďThatís it! Iím the last one! Have a great day!Ē

    Thatís the first time that has happened in my 13 years of walking this trail.

    Are Jonathan and Michael riding bikes in Heaven?

    I sat on the bench looking out on the horizon and the peaceful setting. I began to sob gently. I have to get it out, and when I cry, it upsets Jim. He feels helpless and probably like heís burdening me, which of course, is impossible. We vowed to see it through to the end. We will.

    If our roles were reversed, I know positively that Jim would be doing all of this for me. The careproviding part would be easy for him, as Jim is an incredible, competent, and loving careprovider. But the rest of the administrative, managerial, organizing stuff, the phone calls, the fighting, he wouldnít know where to begin.

    Itís no secret to anyone how much I adore Jonathan, Michael and Jim. I would move mountains and walk around the world for them. This is why God put me on Earth and blessed me with them. I answer to the Highest Authority, and I will carry out my promise with honor and unconditional love.

    JONATHAN

    Our home is empty without him here. Jim and I have both thought that we heard him in his room, dropping the holder for his Blu Ray or DVD on the floor to let us know it was over, and he needed a new one, coughing, his various sounds when heís enjoying his videos, and banging on his bed with his left hand as heís falling asleep.

    It is so unbelievably difficult to go into Jonís room, and especially to walk across the rug in Michaelís room, where Jon laid, and I cradled him in my arms for the last time.

    On the one hand, I want to go through Jonís room with a trash bag, throwing out all of his supplies. His full G Tube formula bag still hangs from the IV pole. The light is still on. I want to freshen it up and create a new space for him, as we did for Michael.

    On the other hand, the thought of doing this petrifies me, because I can remember what it was like after Michael passed. It took me 5 years to be able to clean out his closet, and it was so painful then.

    The fact is that I donít have time, energy, or strength to clean Jonís and Michaelís rooms and create the Easter feeling I want to have there to replace Christmas. I donít even know if Iím ready to do that yet.

    PROCESSING?

    I say that Iím processing all of this, but Iím not sure that I am, because I have so many filters obstructing full grieving over Jonathan.

    Jimís needs are urgent and intense. I canít fully grieve, when I have to be strong for him.

    I donít know why all of this has to happen at once, and Iím trying not to be upset and say, ďThis is a little unfair, donít You think?Ē

    Itís a challenge for me right now to believe that all things happen for a reason. What is the reason that my son dies and my husband clings to life? And I am riddled with guilt that I didnít do enough for them?

    Thank you all for telling me that Iím a good mother and wife, but in my being right now, I wonder if I truly am, because I should have done this, that, the other thing.

    As I was sobbing over Jonathan on the floor, the paramedic came in and said softly, ďEven if youíd taken him to the ER, this might have happened. This was not your fault, Maíam.Ē

    They saw Jon, his contorted body, full of fluid and lymphedema scabs on his legs. They saw all of his prosthetics, which kept him alive for so many years. They saw the many photos of Jon and Michael and us all over the house, when these problems didnít exist. When they were young and able to be out and about all of the time. Our boys are everywhere, and, itís obvious to anyone how much we love them.

    I have to do what needs to be done, and I will. I always have, and I always will. To be able to do that, I will have to let the pain creep in a little at a time, deal with it, and move on to the next thing. The time will come, when it will all flood out. I understand grief well, and I know what coping tools I have to use to get through Jonís passing and meeting Jimís needs.

    Jim and I are using humor to help us. We watched a couple of innings of the Dodger game today. Weíre trying to deflect our pain, because Jimís health is so fragile. And we both know that.

    Nancy will be here Tuesday for Jimís blood draw via his port. Please say a prayer of thanks for Nancy. She is being put through the ringer by her agency. But she is working so hard for us.

    I could go on, but thatís enough for now.

    Thank you all so much for listening and letting me express my pain and anxiety in its rawest form.

    We love every one of you and pray for you and your loved ones.

    Love & Light



    Rose
    Mom to Jon, 49, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.

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  11. #26
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    Quote Originally Posted by Earth Mother 2 Angels View Post
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    ((((((Hugs to All)))))) ~

    Thank you all so very much for your condolences, prayers, and love for us. We are so grateful to you for traveling beside us on our journey and lifting us up, when we are struggling.

    JIM

    I stayed with Jim again last night until about 2:30 a.m. Jim had slept well on his side for the first time in days. The recliner is just not working out for me, as it seems to create pressure on my right side/back, where I laid on the floor with Jon. I can’t keep trying to sleep in the recliner, if it’s going to exacerbate that pain.

    Jim woke up at 3 a.m., as I just climbed into bed (seems a pattern here, eh?), so I went down and got him repositioned, checked his output, told him to drink more water. I then went back up to bed, awoke at 7:30, and went down at 8:00 after heating up my back. Jim had not fallen to sleep again.

    At least as far as he can remember. He doesn’t realize that he is sleeping now. He dozes on and off.

    Cath change, new drainage bag (infection protection), breathing treatment, breakfast (I had a good breakfast today as did Jim), tea, reminding Jim to remain straight in the bed and not lean to his right, taking his SATS, adjusting O2, How many times have I found him with only one cannula in his nostril, the other on the side of his nose? Or on his chin? etc. etc. etc.

    THE URN SEARCH

    Donna and Tracy are helping me find the urns I want to use for Jon. I want Jon’s urns to match Michael’s urns. So, we communicated via email today.

    Jon gave me his first sign today, when the “End of the Trail” popped into my head.

    I searched that and found that urn, but the one I need is “Warrior.” Turns out this Lakota Sioux tribe also had that urn. It’s different than Michael’s in color. But it suits Jon as does Michael’s. Bold for Jon and demur for Michael. Additionally, Jim is fascinated by the Lakota and has studied them extensively. He reads his favorite book about them often.

    As it happened, Donna found the same urns on a different website.

    Thank you so much, Donna and Tracy, for helping me.

    BACK TO JIM AND THE O2 CONCENTRATOR

    Then Nurse Nancy called needing information about Jim’s supply needs to submit her evaluation of Jim to the agency admitting him for service.

    That brought up the whole Jim having his own O2 concentrator debacle, and I’m losing it over this, because this is ridiculous. He has Stage IV LUNG cancer, COPD, and dozens of other problems. He needs a blasted O2 Concentrator! Why must I fight for this?!

    Since Dr. H retired, Jim doesn’t have a pulmo, and the one, who saw him in the hospital didn’t think he needed O2 at home. Well, I’m not a doctor, but I know that he needs it, and so does Nancy. Dr. K says it’s out of his purview.

    So, I emailed Dr. A, our PCP for 20 years today begging him to help us. Just authorize an O2 concentrator for Jim like you did for Michael and for Jonathan all of these years. They didn’t have a pulmo either. Or a neurologist. Dr. A and I handled all of that, with Nancy’s help.

    I closed my email with, “We are exhausted and grief stricken. Please help us.”

    HOW THIS IS AFFECTING ME

    You know, our son just died. He JUST died, not a week ago, two days ago. Why do I have to be in charge of getting what Jim needs to keep him alive?

    I’ll say it to all of you, as I did to Jim today, “I am not ready to lose you too.”

    I don’t think I could take it, my friends. I am dealing with trauma, of a magnitude that I cannot adequately describe, watching Jon receiving CPR, laying on the floor, the police, everything. I am so bereft, I can barely deal with it, so I just have to set it aside.

    Jon’s chart is still on the dining room table, and on top of the chart is the bag with Jon’s locks of hair. His meds are still on the kitchen counter. I threw out his water pitcher today. I washed his Elton mug, in which I kept his G tube and med syringes, in the dishwasher.

    And all of you so want me to rest and take care of myself. Clearly, I’m doing the best I can in that regard, but Priority #1 now is Jim. I do not have the option of not taking care of him. I’m terrified of germs for him, so having others here to care for him isn’t feasible, if I could even find someone to fit that description. Nancy can’t do it. I can’t even get a concentrator for Jim, so I can’t imagine finding a caregiver. Most of all, Jim doesn’t want that.

    MY WALK

    I did take a walk this morning. It was painful, as my RA is flaring, of course. But I knew I needed fresh air and the gorgeous weather, sunlight, and blue skies for strengthening. As I reached the overlook of the golf course lakes, my favorite spot, a group of about 10 men on bicycles came streaming past me on the sidewalk. (I was on the grass.) They came in 2-3 men spurts. Every one of them said, “Morning!” to me.

    I had my back to them, so finally I said, “How many of you are there?!”

    The last man said, “That’s it! I’m the last one! Have a great day!”

    That’s the first time that has happened in my 13 years of walking this trail.

    Are Jonathan and Michael riding bikes in Heaven?

    I sat on the bench looking out on the horizon and the peaceful setting. I began to sob gently. I have to get it out, and when I cry, it upsets Jim. He feels helpless and probably like he’s burdening me, which of course, is impossible. We vowed to see it through to the end. We will.

    If our roles were reversed, I know positively that Jim would be doing all of this for me. The careproviding part would be easy for him, as Jim is an incredible, competent, and loving careprovider. But the rest of the administrative, managerial, organizing stuff, the phone calls, the fighting, he wouldn’t know where to begin.

    It’s no secret to anyone how much I adore Jonathan, Michael and Jim. I would move mountains and walk around the world for them. This is why God put me on Earth and blessed me with them. I answer to the Highest Authority, and I will carry out my promise with honor and unconditional love.

    JONATHAN

    Our home is empty without him here. Jim and I have both thought that we heard him in his room, dropping the holder for his Blu Ray or DVD on the floor to let us know it was over, and he needed a new one, coughing, his various sounds when he’s enjoying his videos, and banging on his bed with his left hand as he’s falling asleep.

    It is so unbelievably difficult to go into Jon’s room, and especially to walk across the rug in Michael’s room, where Jon laid, and I cradled him in my arms for the last time.

    On the one hand, I want to go through Jon’s room with a trash bag, throwing out all of his supplies. His full G Tube formula bag still hangs from the IV pole. The light is still on. I want to freshen it up and create a new space for him, as we did for Michael.

    On the other hand, the thought of doing this petrifies me, because I can remember what it was like after Michael passed. It took me 5 years to be able to clean out his closet, and it was so painful then.

    The fact is that I don’t have time, energy, or strength to clean Jon’s and Michael’s rooms and create the Easter feeling I want to have there to replace Christmas. I don’t even know if I’m ready to do that yet.

    PROCESSING?

    I say that I’m processing all of this, but I’m not sure that I am, because I have so many filters obstructing full grieving over Jonathan.

    Jim’s needs are urgent and intense. I can’t fully grieve, when I have to be strong for him.

    I don’t know why all of this has to happen at once, and I’m trying not to be upset and say, “This is a little unfair, don’t You think?”

    It’s a challenge for me right now to believe that all things happen for a reason. What is the reason that my son dies and my husband clings to life? And I am riddled with guilt that I didn’t do enough for them?

    Thank you all for telling me that I’m a good mother and wife, but in my being right now, I wonder if I truly am, because I should have done this, that, the other thing.

    As I was sobbing over Jonathan on the floor, the paramedic came in and said softly, “Even if you’d taken him to the ER, this might have happened. This was not your fault, Ma’am.”

    They saw Jon, his contorted body, full of fluid and lymphedema scabs on his legs. They saw all of his prosthetics, which kept him alive for so many years. They saw the many photos of Jon and Michael and us all over the house, when these problems didn’t exist. When they were young and able to be out and about all of the time. Our boys are everywhere, and, it’s obvious to anyone how much we love them.

    I have to do what needs to be done, and I will. I always have, and I always will. To be able to do that, I will have to let the pain creep in a little at a time, deal with it, and move on to the next thing. The time will come, when it will all flood out. I understand grief well, and I know what coping tools I have to use to get through Jon’s passing and meeting Jim’s needs.

    Jim and I are using humor to help us. We watched a couple of innings of the Dodger game today. We’re trying to deflect our pain, because Jim’s health is so fragile. And we both know that.

    Nancy will be here Tuesday for Jim’s blood draw via his port. Please say a prayer of thanks for Nancy. She is being put through the ringer by her agency. But she is working so hard for us.

    I could go on, but that’s enough for now.

    Thank you all so much for listening and letting me express my pain and anxiety in its rawest form.

    We love every one of you and pray for you and your loved ones.

    Love & Light



    Rose
    Hi Rose,

    Thanks so much for the update! This probably won’t help much but: The paramedic was exactly right. This was nobody’s fault. You did every possible thing you could. The paramedics did everything they could. You did NOTHING wrong. People have sudden cardiac arrest all the time for no reason. Its why my Drs were so careful after my fainting incident effecting my heart or not(was Jon ever checked for irregular heart beats before this?) God has his timing. I really don’t mean to sound insensitive when I say this so I sincerely apologize if this sounds bad, but perhaps God knew that if Jon outlived you and Jim, Jon would die in some awful painful manner and instead wanted Jon to pass in a place where he felt so well loved and comforted. I don’t know. Perhaps God made it so Jim would need you so the grief would not consume you to the point of utter despair. I understand the guilt as I have experienced death in my family. I have also seen my friend lose her child in 2010 and it nearly destroyed her. It is okay to feel death is unfair. I can tell you the rawness and guilt of this painful time will indeed pass.

    As for Jon’s room leave it as is, except the medical supplies that expire, for a little longer. It took my family a few weeks to clear the rooms etc. Just follow your instincts with timing.


    Jon is watching you now and I’m sure he knows how much you did on the night he died. Jon lives on in heaven, in you, and our conversations about him. Jon has quite the legacy. I’m sure Jon told you about the urn. I’m sure Jon is immensely proud of you. I’m sure Jon knows how much it would hurt you if Jim left so I’m sure he is doing everything he can on his spiritual end to help Jim. I pray for you all.
    Last edited by funnylegs4; 04-14-2019 at 08:45 PM.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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  13. #27
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    Dear Rose, I think what Funnylegs is saying is somewhat what I was going to say. We all grief in different ways and on our own timetable. We can't rush it, so don't even try. As far as cleaning out Jon's room do it when you want to. No matter how long you leave it the way it is it isn't hurting anyone. Do what you feel is best for you and do it when you feel you want to. Other than the perishables why worry over any of it. Even grief stricken people who have no one else to worry about do not rush to clean rooms or get rid of clothes. They do it as they feel they can and have come to a point that they think it is right. It could be six months, one year, or 5 years. These are not important thing.

    We all will always be here for you. Please talk to us and keep us informed as to what is going on with you. We will worry more if we don't hear from you than if we do and if you need to talk it out, just keep on doing it. You have been our family and we will be here for you.

    Hugs and love to you and Jim,
    Virginia
    Virginia

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  15. #28

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    You are unbelievably strong, Rose. I am just in awe reading your updates. I have no words of wisdom but just wanted to say that I am keeping you and Jim close in my thoughts and sending lots of love.
    Enjoying the excitements of life. Looking forward to what's to come! What a ride!

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  17. #29
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    OMG Rose I am just now seeing this! My chin about hit the floor, and then the tears! I just can't tell you how shocked and saddened I am to hear this. I feel like it's just a dream and I'll wake up. I never expected this. Like Funnylegs said I thought he would live forever regardless of his health issues. Even though we've never met IRL I feel so close to your family. This is such a huge loss for the BT family. I'm so thankful for all the wonderful caring people around you who have tried to make this easier from the EMT's to of course John. I pray for peace for you and Jim and for good health for you both. Please know you are both so close in my thoughts and my prayers.
    Mary Grace

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  19. #30
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    Rose, you've had so much to cope with and for so long that it's not surprising at all that you're feeling as if it's more than you can stand.

    It takes a long time to get over such a grievous loss, and I hope you'll accept any offers of help or support that come your way if you think they would genuinely help you. From reading your posts, I'd say you're the sort who doesn't want to burden anyone, but maybe now is the time to set those concerns aside.

    I'm so glad you're taking the time to let people here know what is happening with you.

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