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Thread: Jim Has A Fever. ER Bound

  1. #31
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    Default Dehydration Deja Vu

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

    Thank you all for your love, advice, insight, prayers, and friendship. I wish I had time to respond to you each individually.

    Despite my repeated requests of Jim that he drink more water and tea this morning, and his insistence that he was, he wasnít and didnít.

    Now, this afternoon, heís dehydrated again. Iím pushing water, tea, and orange juice (which I'm now mixing with his water) with him. He just finished half a bowl of tomato bisque soup and an Amyís pocket sandwich.

    His temp was 100.2 at 3 p.m. At 4:00, it was 102. I gave him 2 Tylenol, as they did in ER and am hoping that brings it down as it did then. He was also saying loopy things.

    **I lost my internet connection and am back on line. His temp now is 101.4, so the Tylenol and fluids are working. Got interrupted again to serve Jim frozen banana ice cream and Cashew ďice creamĒ chocolate truffle. Then he wanted a strawberry jam sandwich. His appetite is excellent! Temp is now 100.7. Continuing to drop.**

    Deja vu Wednesday night. Not as bad this time, but not good.

    He is peeing well, and I gave him Lasix, as ordered at noon. I think it dried him up, after two large pees. Iím not sure that itís a good idea for him to keep taking it, if he isnít taking in enough fluid.

    Nancy and I discussed hanging a saline drip for him at home, and it looks like thatís what weíll have to do. Iím fairly sure that all Iíll have to do is take down the empty bag and put up a fresh one. I can handle that.

    I did some ďroutine maintenanceĒ on Jim today. His beard was the longest itís ever been, very scruffy. It was a job, but I managed to shave him, and he looks like himself again. His nails would have made Howard Hughes jealous, so he had a manicure.

    I washed all of his lounge pants (as we call them), so heíll have clean ones, if we have to go back to the hospital. Iím praying that we donít have to go to ER. Iím hopeful, because he is more alert now. But, weíve agreed that if he has to go, he has to go.

    I peeled potatoes today to steam with rainbow carrots, onion and mushrooms for tonightís dinner. Weíll have some Alexia cauliflower risotto, as cauliflower is good for WBCs. Heíll have Gardein fish filets, while Iíll have Gardein turkey cutlet. May not sound exciting to anyone else, but itís a ďreal mealĒ to us.

    Without a doubt, Jim would be back in the hospital, if he had stayed at the ďfacility.Ē He wasnít getting a saline drip there, and he had a water jug with a straw in it for hydration. They also wouldnít have noticed or checked him for dehydration.

    I wrote a very long email to Dr. K today (in 4 parts) telling him about the facility and why Jim left AMA, my conversation with Nancy, and what has transpired since Jim came home with my care. Tomorrow I will follow up with a call and ask for an order for a saline drip at home.

    All day, I have been praying that we would get a break today. We have spent too many holidays in the hospital with our boys. I have been asking Jon and Michael to watch over their dad and me, as I know they are.

    Jimís temp came down, and he is drinking without me asking him to do so, and heís more alert and with it now. Our prayers were heard, and our boys are right here with us.

    We just have to keep working at it. And we will.

    Thank you all again and again and again for walking beside us and lifting us up in prayer and supporting us in every possible way.

    We love you!

    Love & Light,



    Rose and Jim
    Angel Jon and Angel Michael
    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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  3. #32
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    Quote Originally Posted by mg12061 View Post
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    Rose, I wish I could help you! I've read your last 2 posts and first I have to weigh in about the awful treatment in the nursing home. My mom was in one for a month in February waiting to get strength for a heart valve replacement. She was miserable the treatment was as you said awful. Uncaring! she wet herself many times waiting for someone to come help her to the bathroom, then would sit waiting for help off. Stand over her telling her to "do it yourself" for things she couldn't do.The food at times was inedible. She was in tears a few times, and becoming depressed. I think the worse thing she told me was that if they complained there was "payback" !!!! This was a thing! I couldn't believe it. I will make my complaint now that she is home! She finally came home yesterday. She had her valve replacement spent about a week in the hospital and then another 2 weeks in a rehab that was supposed to be the best. My cousin even worked there in nurses training. We talked at great length and she knows of the issues and I know this is a big problem they are way understaffed BUT the bigger problem is the staff they do have do not care. We talked about how volunteers would be helpful just do do things that would give them things to look forward to. Our nursing home/rehab. is in great crisis!! The new place was no better. She was treated with no respect and not an ounce of care. We finally met with the team and sprung her. They wanted to keep her there but I told them at this point her mental health was in jeopardy. She was depressed and losing hope. We need to revamp how this system is working. Many other countries have solved this problem. The Netherlands have created adult homes that share their living space with college students who stay free and volunteer a certain amount of hours to work with the adults. There's also a model of this in I think Cincinnati. So glad you got him out of there!
    I'm so sorry that every step is so difficult and so complicated. YOu are one amazing lady! But you sure are being tested... I agree with all of funnylegs words she is spot on. I'm so glad you come here and update us I think about your family every day. I hope you feel our prayers and warm hugs from afar.
    Happy Easter! I hope you and Jim have a good day!
    Mary Grace
    Mary Grace, So glad you liked what I wrote! Iím so so sorry your mother went through that! That is absolutely HORRENDOUS! And people wonder why people in nursing homes are depressed?? So so wrong! How was your mother supposed to gain strength in a place like that? I pray that NEVER happens again!

    Rose, a saline drip should be easy for you so do not worry. A woman I know who had surgery told me to tell you even if Jim has the saline drip his mouth may dry out so keep Jimís mouth moist for comfort. I love Gardein brand! I saw the way you signed your post and the update to your signature which is heartbreaking but very appropriate and beautiful! May I share your posts about Jon with a woman who has a brother with a neuromuscular condition somewhat like Jonís?
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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  5. #33
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    Rose, I was out for just a little while today, but kept wondering how things were going for you and Jim. So lo and behold an update was right here for me when I got back. Thank you for keeping us as up-to-date as you can. With everything else on your plate it is amazing that you are able to do this. We all care so much and want to hear from you when you are able.

    You are a great Mother and Wife. I don't know too many people who would have had the stamina that you HAD to have just to keep everything going the way you have. Under the circumstances that you are in it is remarkable. I hope Jim can keep the fluids going in and things can kind of even out for awhile and give both of you some time just to "be". You both deserve it so much.

    I really liked what Funny Legs and Donna had to say about finding a way to help "you". Donna had a really good idea about the meditation. She always has very good and practical ideas.

    The two of you are always in my prayers.
    Virginia

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  7. #34
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    Thumbs up Temp Normal Much Better At Home

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

    Jim's temp is normal, and he's holding SATS in the mid 90s on 2.5 liters, a big drop from 4 liters. He's been up to the bathroom for a BM and a huge pee. No ER tonight, thanks to God and our Angels.

    I didn't make our big meal, as I am running out of steam after 15 hours on the go, nonstop. I even had to clean out Michael's pond today and add water to keep the fountain flowing.

    Jim finished his soup, and had a cheese sandwich, another bowl of bananas and ice cream and a cookie. His appetite is great.

    Now, we are winding down, and he'll sleep for a couple of hours, and I'll wake him to drink fluids. That's how the night will proceed.

    funnylegs4 ~

    Jim uses Hydris and Ricola drops for dry mouth. Nothing else seems to work.

    Of course, please do share my posts with your friend and invite your friend and/or mom to join us here.

    Virginia ~

    Updating is how I spend my "breaks." Sometimes the break is only 10 minutes, but I type fast!

    Donna ~

    I do meditate, and in my new post in Jonathan's thread, I discuss my conversations with Jonathan and Michael. I just don't have enough time to focus on grieving for Jonathan, because every second seems to be consumed with meeting Jim's needs. I've been in the midst of weeping, and Jim calls for me, or it's time for a breathing treatment or make him orange juice or tea ... When I start to meditate or pray, I have to stop abruptly, so it is difficult to get into that space, where I can communicate with Jon and Michael.

    There is so much "noise." By that I mean, all the pressing matters awaiting me, like calling all of the agencies and telling them that Jon has passed, which I must do this week. Arranging for pick up of his equipment and supplies. Making sure that the van passes the smog test tomorrow and that John remembers to do it. I have a stack of bills to pay. I have to call Dr. K and Nancy. I need to place an Instacart order, because Jim is running out of briefs (plus other items I couldn't get from the last store).

    Jim's care is constant. I've been on my feet and up and down the stairs and all around the bend today. I had to get him rehydrated. It was a long, long, long day.

    No time for me to meditate, to find a moment of quiet and peace. I have to snatch a second here or there.

    I can only do what I can do. It just hurts to feel so separated from Jonathan and Michael in this way and at this time.

    Thank you all for your love and prayers. Jim is feeling much better, and we thank you for helping that to happen.

    We pray for you and your loved ones too.

    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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  9. #35
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    Rose, So glad things are looking a little better for Jim. I love making " frozen banana ice cream" with other fresh berries for Kathleen is delicious. I mentioned in my other post about the awful conditions my mom had endured in the rehab. Now she's back in the hospital probably because the rehab didn't monitor her health at all. She came home Saturday and was back in the hospital Sunday. Unable to walk, and very dizzy. Her blood pressure was 80 over something I can't remember. She was severely dehydrated which I'm certain didn't happen overnight it was happening at the rehab. It was most likely caused by the Lasix she was taking. She was peeing nonstop (honestly they were very annoyed at her for peeing so much and not being able to wait grrrrr) and they never monitored her hydration or blood pressure. She was so upset about going to the hospital but luckily my brother got her there. Who knows if she was at the rehab another day or two if they would have gotten her to the hospital????
    Keeping you and Jim in my prayers for continued healing.
    Mary Grace

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  11. #36
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    Hi Rose,
    I read your post in both threads. I’m so so glad you have been taking time to cry and grieve! It is so needed! Yes Jon and Michael did bring us together. Jon and Michael gave us the precious gift of friendship and that gift will live on forever in some form. Your story has helped so many people so rest assured you made an impact. Yes I understand what you mean about time stopping. My friend lost her child which I wrote about in the Braintalk archives here http://www.braintalkcommunities.org/...ad.php?t=82603 My friend’s whole world just came to a halt. She was completely different after her child died and I didn’t even know how to interact with her because I didn’t want her to think we expected her to just get over it too quickly but we also wanted to share with her about our lives. It was so hard to know what to say or what not to say. Thanks so much! I sent the link to the woman whose brother has the neuromuscular disease via email so I hope she will join Braintalk! My family however are not big on joining or posting to forums but they have heard your story and send their very best! If they have something to say I usually type it to you for them. Same with my teacher. He’s a bit shy about online stroke forums etc. Prayers to you all.

    Mary Grace, I’m so sorry about your mother! Ugh! As you know I’v experienced one dizzy spell myself right before fainting so I know how utterly unpleasant that is, and my doctor said when someone is dehydrated the blood vessels and blood pressure change. Given she just had a heart procedure that is dangerous and had to be terrifying for her emotionally as well as she must have thought it was the heart valve. Just completely unacceptable! My teacher who had the stroke luckily went straight back to the comfort of his own home with very careful monitoring after he was discharged but I know many stroke survivors go to nursing homes or rehabs so it makes you wonder how many of them die or don’t regain function simply because of bad care like you and Rose have described. I shutter at the thought of what would have happened to my sweet teacher during one of his awful dizzy spells in a “facility” or what would have happened to Jon and Michael in these places. Prayers to you and your mom!
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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

    Mary Grace ~

    I’m so sorry your mom is having such a difficult time. I completely understand why she doesn’t want to be back in the hospital, but it is the best place for her, as we learned with Jim. We’d rather be in the hospital than rehab (or skilled nursing facility). Does your mom have home health care? That might be something she needs. She and you and your family are in my prayers. May your mom be stabilized quickly and able to return home soon.

    funnylegs4 ~

    I hope that our story will help your friend and that she will consider joining us. If not, this is a treasure trove of information, so she can read and learn from all of us. Thank you and your family for your prayers and positive thoughts and energy.

    MONDAY MORNING CALLS FOR JON

    Jim’s urination slowed down again overnight. He started drinking water. I even made him decaf espresso hoping that would help. He had a small pee and BM at 10 a.m.

    I called Regional Center and IHSS today to tell them that Jon had passed. I don’t know who Jon's current case managers are, since they change constantly.

    I left a message with IHSS accounting, because I have their number. Later, a woman called and left a message to call her back. She talked so fast that I had to listen to her message a dozen times to get her call back number. I called her. No answer, and no voice mail.

    Jon’s Reg. Ctr. case manager is on medical leave. The on call case manager called me. I told her that Jon had passed and what his overall condition was, especially since November. She said she had questions to ask of me to close out his case and would call me back. And she did, just as I was helping Jim to the bathroom.

    She asked if this was a good time to call. I said, “There is never a good time. Let’s just get it over with now so I don’t have to play phone tag with you.”

    When was the last time he saw his doctor?

    I had to explain our arrangement with our PCP, who isn’t allowed to make home visits. Nancy is the doc's eyes and ears. I communicate with him via the portal. His GI visited every year to change his Gtube and give Jon an overall assessment.

    How was he the day before he died?

    Perfect. He was perfect. John and I turned him, and everything was fine. That night, Jim came home, and Jon became ill. That’s how it happened every time it happened.

    Were attempts made to resuscitate him?

    Paramedics worked on him for over a half hour. The police were here, CSI was here, I talked to the Coroner, the mortuary picked him up. Yes, please, please make me relive this horrible nightmare to you, a stranger, who has no clue about Jon or us or how precious he is to us. Make me relive it. Aaaggghhh! (I didn’t say that. I just felt and thought it.)

    What is the cause of death?

    “I don’t know. I haven’t seen the death certificate yet.” I paused. “Jon was 49 years old, had a trache, g-tube, colostomy, indwelling catheter, horrible wounds on his back and rear end. He had seizures. He had numerous episodes of filling up with fluid …” I stopped. “Is that enough?"

    She repeated a couple of questions, and I was terse. “I just told you …”

    She offered me counseling referrals. I thanked her and told her that I am taking full time care of my husband and cannot go anywhere. “I know how to grieve for my son. I’ve been grieving for his brother for 16 years.”

    She apologized for having to ask me these questions and expressed her condolences. It’s not her fault. I know that. But I felt like I was being interrogated as a suspect.

    JIM AND THE NEVER ENDING DEHYDRATION

    Yeah, we went there again today. His temp is 101 and holding now. A Tylenol or 2 are in his future.

    He went to the bathroom twice with very small pees and poos. But it was something. Normal temp in the a.m., but it began to climb mid day. He is cold and piling on his blankets. I am nagging him that they must come off for him to cool down. Every time I turn around, he’s pulled up his flannel sheet under his chin. So, I’m the bad cop.

    John was coming over to take the van in for the smog check, so I asked him if he could pick up some Gatorade for Jim. When John arrived, I gave Jim 12 oz of Gatorade.

    The van checked out, and now that stress is off of my plate. Thank you John!

    Two hours later, just as Jim was putting Lasix in his mouth, he started to pee. He sat up, and it was voluminous compared to previous attempts. Gatorade worked. And then I he took the Lasix. So, now he’s peeing a lot.

    A half hour later, as I was starting Jim’s breathing treatment, he handed me the cup and said he was going to pee again. So maybe Lasix is working now? Or both? But he’s peeing like American Pharoah.

    Still waiting on the temp to come down.

    Got interrupted by peeing after I wrote that last sentence. Lasix is working overtime He’s had 2 pees in one brief, one pee on the toilet, and another pee in his new brief that we just put on in the bathroom after he was freshly clean with a protection of CBD cream.

    So, now I have to keep him hydrated, while he’s peeing out all of this fluid. Or try to maintain a balance.

    In the bathroom, he coughed up blood. He said it was no big deal. As long as it doesn’t continue, it’s incredible to me how doctors aren’t alarmed about coughing up blood. ?????

    I’m still waiting to hear from Nancy. I texted her 3 times and called her once. She is supposed to visit tomorrow, but I don’t know what will be happening. A blood draw? Saline drip? I need guidance. And lots of it.

    I’m so grateful that Jim is peeing, but I do pray that it slows down a little now. Just normal peeing would be a delight at this point.

    Thank you all so much for your love, prayers, and friendship. We love 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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  14. #38
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    You're right - too much of a good thing can be a bad thing!

    So glad your van checked out! A good piece of news for you! Hopefully Nancy will have everything organized for you tomorrow and going forward so you're not left wondering what's going on.

    I was waiting for your signature to change, but it's a difficult thing to see. I know its meaning is even harder for you. Sending you my prayers and love.
    Please Note that my posts may have been arbitrarily altered by a Moderator and may not reflect my original content.

    Per Mike Weins: "...the admin/mod team doesn't have to provide a forewarning/warning/mention about altering a members post. It doesn't matter if they fix a link, remove a link, fix a typo, or whatever...."

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  16. #39
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    Hi dear Rose,
    I am glad Jim is peeing - but maybe a little moderation would be appreciated as Suze-Q said. Fluid balance is so tricky as you know too well from Jon. But each person is different and with Jim, it seems as though sometimes he has some degree of diminished insight https://en.wikipedia.org/wiki/Anosognosia. But I think anyone would get that with the illness and heavy duty cancer Jim has had. It's the 'chemo brain' making him think that he HAS been drinking enough water, right? He honestly thinks he has.
    Rose, I am so sorry that you have to relive your trauma of losing Jon with so different people - when will you be 'allowed' to grieve? That conversation with the woman from the government sounds so awful. Do these people not receive empathy training at all? Are they so worn down by constantly talking to people in crisis that they have no soul left at all? I'm just so sorry you had to go through this on top of everything else.
    I hope and I pray that Jim's fluids will balance and that you will have a few days of peace when you can both grieve for your son together. I'm glad that you have your van back, that is one good thing.
    I love you! xoxo Donna
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


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  18. #40
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    ((((((Hugs to All)))))) ~

    SuzE-Q ~

    Jim's peeing did slow down, and then when I woke him up for hydration at 3 a.m., he climbed back in bed, and I went to bed upstairs. At 7 a.m., he told me that he'd been up 6 times to go to the bathroom to pee and occasionally have a BM. That's every half hour. I made tea for him, prior to going to bed, and he turned on golf or soccer on TV, so it's possible.

    But then, he didn't go again until 5:00 p.m. Eleven hours. I had given him Gatorade, then gave him Lasix. The pee was huge, and we anticipate more.

    Nancy did not visit today. Because Jim had been in the hospital, he had to be recertified for home health care. She didn't have lab orders from Dr. K. She had to go to the agency's pharmacy to get the right needles for his port. I was on the phone a few times today trying to get it sorted out, until we finally agreed it would be too late for her to get to the lab with Jim's blood (they close at 5 p.m.).

    Tomorrow is her day off, but she is going to visit to draw Jim's labs in the morning. Dr. K wants Jim to come in on Thursday, and I have to email him that that is out of the question right now. He says he can't treat him peripherally. Really? Well, not all cancer patients are up to dragging themselves into your office. And Jim is one of them. He'll have to go by ambulance, have O2. Not happening.

    It's touching to me that you and others waited for my signature change. It's been there for so long, I guess. I labored over it for quite awhile. Space is limited, so I was restricted in that regard. Jim and I watched over them. Now, they watch over us. Angels on Earth and Angels in Heaven. They always had one foot on each side.

    Thank you for your love and prayers.

    Donna~

    Jim's memory issues haven't been diagnosed. I suspect there are many contributing factors, including: chemo, Opdivo, scans/MRIs/x-rays, dye used for those tests, metastasis to his skull/radiation, not enough O2 to his brain, sleep deprivation (for a variety of reasons). But when he's loopy, and making no sense, it's because he's dehydrated.

    How right you are about balancing fluids. This has been just as difficult with Jim as it was with Jon. It's just a continuation. Nancy mentioned that liver issues could be the culprit, but so far, no one has mentioned Jim's liver to him.

    The Regional Center case worker was obviously uncomfortable talking to me, and she was asking questions from a form. One size fits all. This program and IHSS are state-funded programs, so they have to fill out forms for everything. Of course, being asked these questions just reminds me of the police officers in our home. It's as though they have to think you did something wrong initially, until you convince them otherwise.

    The Exec. Dir. of Reg. Ctr. was case manager for Jon and Michael in the 80s-90s. He went through a lot with, including fair hearings. He knows me well and would vouch for me anytime, anywhere. But I shouldn't have to feel like I need someone to defend me.

    Jim ate dinner by candlelight tonight. An LED candle that is. His appetite is pretty good. He had half of an Orgain shake with his meal, which made me happy. We are waiting on more pees.

    One step in front of the other. That's all we can do.

    Thank you all for your love, prayers, and just being wonderful you. We love you, and we 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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