Just a Newbie to this Forum and wanted to Hello!

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White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3609
   Posted 2/25/2009 3:57 PM (GMT -7)   
Hi, I am a new member of this Forum and I want to Thank Moderator Chutz for introducing me to this site! Although I am  a new member to this site, I am not a new member to the world of CP, It has been  my constant partner and companion since 97. But first off, let me let you know who I am, I am a  Male, 57, retired Us Air Force, after retiring I  went back to school and became an RN. Worked on an Oncology unit and Med Surg. untill I injured my back in 97, and was nolonger able to work, and was put  on disability shortly afterwards. I guess I am one of the luckier ones along with disability,  I also have my military retirement to live on.  Anyway as it turns out I have multiple disc problems, allot of them being Thorasic disc, but Cervical and Lumbar are not spared. I did have a C/6/7 diskectomy and fusion back in the 80's, but short of fusing my whole spine, surgery is not an option right now!  I go to a pain clinic and am on pain meds 24/7 Some Docs say I also have Fibromyalgia, but others say it is all related to my back, and allot of Doctors have even said they think that I might even have MS, but it has never been confirmed. But I do live with Chronic Pain, I slept in a recliner for many many years because I can't lay flat, but now I have an adjustable bed, and it makes sleeping allot easier. As you might have guessed from my name I have a White Beard, when I retired from the Air Force I also retired the razor. And over the years my beard  has become as white as the snow, and it is a full Santa like beard now. I Love it!!!   And if any of you also have Sleep Apnea I do post over on some of those forums with the same name. Anyway I just  want to introduce myself and say Hi!

skrape
Regular Member


Date Joined Feb 2009
Total Posts : 141
   Posted 2/25/2009 4:57 PM (GMT -7)   
Hello and thanks for the post in my Coming to Terms thread. I am new to this site as well but have found that having someone else to bounce things off of is really great. I hope you find something here that you could not find otherwise. I know I have...


Skrape
Fentanyl Patch - 50mcgs, Norco - 10/325 x 4


Chutz
Veteran Member


Date Joined Jan 2005
Total Posts : 9090
   Posted 2/25/2009 5:17 PM (GMT -7)   
Hey White Beard!

Wonderful to see you here and glad you have become a member of our CP family. We're a small oasis in the sea of pain. I hope you find support here for your pain and some ideas that may even help. It's obvious that you will have much to share with others who still are learning the ropes. Guess that's all of us at some level.

Hugs,
Chutzie
Co-Moderator Fibromyalgia & Chronic Pain Forums
~~~
Fibromyalgia, Ulcerative Colitis, Insulin dependent diabetic, PTSD, dermatitis herpetiformus, osteoarthritis and a few other side dishes.
***************
Happiness is something to do, someone to love, and something to hope for."
(\__/)
(='.'=)
(")_(")


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 2/25/2009 5:28 PM (GMT -7)   
Hi, White Beard (love the name!),
I also wanted to welcome you to the site. I'm sorry you're dealing with CP, but you have found the greatest support group on the web, IMHO (ok, I'm biased!).

I look forward to your joining us, and learning more about you. We also have some fun threads (right now one is about flying around in virtual corvettes and a Yellow Submarine in Maui...or whereever we end up!!) you can jump in on, if you're looking for some fun and distraction.

Again, welcome,

PaLady (BTW, do you play Santa at Christmas?)

White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3609
   Posted 2/25/2009 5:40 PM (GMT -7)   
You know  SKrape it is funny, I never had even thought, of looking for a forum about Pain, or anything, like that, honestly it just never occurred to me! Pain and especially Chronic Pain is such a very deep, emotional, and  personal issue, and you just privately grinned  and bared it, and put up with it! It is so hard to describe, I have yet to find a pain chart, that acurately conveys ones pain. Everyone feels it so differently and no one should ever judge you for it.  But often they do! I learned in Nursing and especially working with Cancer patients, that Pain is what ever the patient says it is! Period end of story! And most Onco nurses and Oncologist  live by that, because they know it's true! However I have seen on other units, that is not alway the case. And often, very often it is  not  the case among the general population, heck if your married it may not even be the case with your spouse! Often people are judgemental, and no one want to hear about your pain, or how you suffer, so you keep it to yourself. I know that is not right, but that often is the attitude of many people!
 
  So Yes! I am glad I was invited to this Forum, and I can't Thank the Moderator Chutz enough for that. I do hope to gain some insight, from the folks here, maybe even make a friend or two,  and also maybe even share an experience or two of my own.

White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3609
   Posted 2/25/2009 5:47 PM (GMT -7)   
I am a slow typer the last two post from Chutzie and PALady were not there when I started my reply to SKrape. Thank-You for the warm Welcome! No I haven't played Santa Yet but I have had request. I do wear wire rim glasses that are perfectly round, and I have been told I they are just like Santa's The problem I have is my hair although thinning is still a dark brown! I am two toned go figure?

Scarred_for_life
Veteran Member


Date Joined Jul 2008
Total Posts : 1559
   Posted 2/25/2009 6:47 PM (GMT -7)   
Welcome to our little spot in the world White Beard. I love your name, it reminds me of my granddad who also had a full white bear. In fact I don't think I can remember a time when he didn't have one LOL. It is so sad that you have to join us and deal with CP. I am always sad to see new faces on this forum, only because no one should have to live with the pain that we all suffer through on a daily basis. But, I am glad that Chutz brought you here and I hope that you will join us on our some what sillier threads. Most of us are just plain silly at times and it helps to break up the horrible times of the day. Anyway I just wanted to chime in and welcome you to the forum and such.

Scarred
What doesn't kill us only makes us fight back harder! :P


Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9622
   Posted 2/25/2009 7:47 PM (GMT -7)   
White Beard, Nice to meet you! sure wish it was under a whole lot better circumstances...
Have you tried using a moist heating pad, sure can help on really bad days...
Make sure you look for an auto turn off one.
Hope you like it here.
Soft Hugz.......
**********************************************
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc, Fibromyalgia, Gerd, Enlarged Pituitary Gland
******** "We could never learn to be brave and patient if there were only joy in the world" from Helen Keller *********

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


skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 2/25/2009 9:32 PM (GMT -7)   
Hi White Beard,

Welcome to the CP board of HW! I'm sorry that you are joining us because you too suffer from CP, but we're happy to have you & look forward to your insight. As Palady said, and I also firmly believe, this is the best support group out there! Keep posting & welcome to our little CP family!

Skeye

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13451
   Posted 2/26/2009 7:03 AM (GMT -7)   
Hi White Beard and I too want to welcome you to the HW family. I too hate seeing new people come along in the shape the rest of us are, however, you could not have found a better place to be at. One thing about it, we all have one thing in common and thats good ole pain. No one understands pain any better than a fellow sufferer.
 
You are not a new kid on the block with pain so you have been there and done that in many phases already. It just stinks what CP does to a person. But, you wrote on a post many things you have encountered, such as people understanding, the average person just does not get it, the looks and so forth. You are so right in everything you wrote.
 
Al least when I come here I can talk about how I really feel and this place is my outlet. Not my husband or children, here HW. I don't discuss much with them because I got sick of CP a long time ago, so if I am sick of it I can only imagine how they feel so I have my family here that I pour my heart out to when it needs to be done.
 
I have a Medtronic pain pump that was inplanted back June of 05. My pain mgt dr that took care of me come to find out later was not educated in the pumps or medications enough to be handling patients with pumps. He quit pain mgt which was a blessing in disguise for me and many others and he referred all of his pump patients to another dr that is a retired neurosurgeon with over a decade of experience in pumps. She is a wonderful doctor and a very smart dr to say the least. She does all of her own compounding mixing in drugs used in our pumps. I was due a pump refill not long after being switched to her care and she visited with me and said that as low as the settings were on my pump and such a low dose I was getting in 24 hrs I may as well been getting nothing at all. She iimmediately doubled the concentration level in my pump and increased the doseage, in addition to raising my BT meds from 2mg to 4 mg and I can have 8mg every 6 hrs. In other words I can have 2 pain pills at one time. Well, since she adjusted my pump I have not needed the oral meds. I am now standing up pretty straight.
 
I will say this, my husband had no clue to amount of pain I was in until after I saw my dr and she made all the adjustments in my pump and orals meds. Now, I am feeling so much better I have started living like a normal person again. He has noticed this. I am still at a low end doseage wise on my pump and have plenty of room to go up. All of the patients that got referred to this new dr only one out of 45 did not need an adjustment. Our new dr said our dr was a great dr he was just undereducated in pumps and medications.
 
You will I feel certain have alot to offer to us here at HW. We all learn from each other in many ways. But, we all understand what may work for one may not work for someome else. Chronic pain is a very individulized disease, it is not a cut and dried illness. The biggest problems most of us run into is finding adequate care. I have read horror stories on here on what some of the people have to go thru with their drs to get help and then the help they are getting is so limited, its really sad.
 
Hope to see you post soon........Susie


uniquelyme
Veteran Member


Date Joined Nov 2008
Total Posts : 1037
   Posted 2/26/2009 8:41 AM (GMT -7)   
 
 
Hello and Welcome White Beard...You are so right about Pain being very personal...Luckily for all of us, we are among friends here.  Everyone that posts here has some knowledge and great advice..from personal experience of course.
 
I have been so lucky to be able to talk, vent, and comfort on this site.  It makes me feel so much better to know that I can say just about anything and they are right here with me.
 
So, keep posting and it's nice to have a new friend..
 
Me. tongue

 
We are all in the same boat...unfortunatley it seems like it's sinking...
 
Rhonda
Post Lamenectomy Syndrome
Hemi Lamenectomy
Spinal Fusion
 
120 mg. Methadone daily
60 mg. Oxycodone daily
Lyrica as needed 

 


Pete trips again!
Veteran Member


Date Joined Nov 2006
Total Posts : 1899
   Posted 2/26/2009 8:46 AM (GMT -7)   
Hey White Beard,
Welcome buddy, sorry your here but if you have to be one of us, you are definitly in the right place. These people are like family here, it still blows my mind that they can be so caring while in so much pain all the time! They definitly make my life easier even though I am not in the kind of pain a lot of these poor souls are. Stick around my friend, this place is not only educational but we also have a hell of a good time sometimes which really eases the pain. Bring your sence of humor w/ you and you'll find that (especially the girls) are a crazy (in a good way) bunch.
Your new friend,
Pete
56 years old, Surgury, Radical Prostatectomy 8/20/03, PSA 6.6, Gleason 3 + 3 = 6, Adenocarcinoma extent (moderate) Stage & Margin:T2NOMX, No Metastases, Organ Confined, bone scan: Neg. 3 1/2 years of depression after surgery prior to Hypogonadizm DX, Testosterone Theropy> new 2/6/09> 400mg injections every 2weeks . 56 and so glad to still be here to see my two sons grow up to be fine young men. They are both serving in the US Navy, one on an aircraft carrier heading for Hong Kong and the other on a Gator Freighter stationed in Norfolk, Va. I am one proud PaPa! 


White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3609
   Posted 2/26/2009 11:40 AM (GMT -7)   
I do want to Thank you all for such a warm Welcome, I am deeply moved by all your comments, I can't begin to tell you how much that means to me! Again Thank-You!

Lindaloo
Veteran Member


Date Joined Sep 2006
Total Posts : 1713
   Posted 2/26/2009 12:39 PM (GMT -7)   
Hi Whitebeard,

Sorry I'm so late in my welcome as well. My name is Lindaloo and I am the other moderator along with Chutz for this forum. I have been staying with my youngest daughter out of town who is suffering from a bout of deep depression. But things are looking up, so I'll be home soon.

Anyway, I too, want to welcome you to the forum. These are great people here with a lot of knowledge and heart. This is just what we chronic pain-ers need. The support is warm and wonderful and for me, it keeps me going. I have back issues too and fibromyalgia. I am a retired RN so I understand much of what you have gone through, although I don't think my back is as bad as yours sounds. My fibromyalgia is a doozy however and I take percocet every four hours for the pain.

And, as for people not understanding about your pain, boy are you right about that. I am lucky though, that my family does and is very supportive.

Please keep posting and let us get to know you and you get to know us. You are home.

Gentle Hugs and God bless.

Lindaloo
Moderator Chronic Pain
 
Believe in yourself.  Be kind to fellow humans and animals.  Take time to smell the flowers and the coffee.
And by all means, when you are down, ask me for help.  I will be there.
 
Linda


White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3609
   Posted 2/26/2009 2:29 PM (GMT -7)   
Thank-You for the warm welcome Lindaloo I also take pain meds 24/7 every 12 hours, and percocet for break through. Over the years I think I have had, or tried just about everything. From accupunture, ten's, and a host of diffferent pain meds, epidural steriod injections, which I still get once in a while.. Just a few months ago my Doctor talked with me about considering an implantable spinal stimulator, but I have so many disc's that cause me problems, we desided it really wound not be a practical solution for me. The medication regiment that I currently am on, seems to keep the pain under control reasonably well as long as I do not do any thing foolish! Of course if I do then I pay the piper royally! The seemingly small things can really be the worst. Example trying to stand in front of the kitichen sink and just washing a few dishes. I have a very difficult time standing up straight and holding my arms out, to do things like that, in just a matter of a few minutes, the mid back pain becomes unbearable, and I will get spasms. Leaning over something helps allot, or just sitting in the reclinner for a little while, waiting for everything to calm down and then I am fine. I use a cain because I can't stand up straight, and it helps keep my balance! ( I suppose it enhances the Santa look)  :-)   And of course it is difficult washing dishes bent over! I sleep in a fowlers position because I can't lay flat, if I try sleeping on my sides, my hands and arms go numb and burn. The adjustable bed was the best thing I have ever purchased! I think the worst thing is, over the years I have made the mistake of withdrawing, and becoming some what isolated, and that is one thing that nobody should do, as I am now paying a hefty price for it. It is not irreversible of course, but lacking family and friends, and an adquate support system at a time in your life when you really might need it, can make a difficult situation that much worse! So anybody that reads this, Please Please, don't hide and or withdraw from your friends and family, or anybody, because of your pain or disability, because in the end, it will hurt nobody, but yourself! Sorry I didn't mean to get off on a tangent, Thanks again Lindaloo and everyone for you Wecome!

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 2/26/2009 2:59 PM (GMT -7)   
Whitebeard,
I think you'll find many of us have become isolated over the years because of CP, and there are a lot of valid reasons for it. I don't think any of us particularly like it, but there are a lot of things we can no longer do, and friends may not understand. Plus in my case there are finances. Won't even go there.

I think that's why many of us come here. You're right in the sense I think I (I can't speak for others) I maybe isolate more than I need to at times, but pain is so unpredictable that I sort of don't want to do things because I know I'll pay a price in pain. I try to do a few family gatherings. I get a sense you blame yourself for the isolation, and my hunch is there are two sides to that story.

Anyway, glad you're here! yeah

PaLady

Post Edited (PAlady) : 2/26/2009 3:14:33 PM (GMT-7)


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13451
   Posted 2/26/2009 3:08 PM (GMT -7)   
White Beard you are so right, some times we are our very own worst enemy when it comes to chronic pain. I know when I overdo its pure hell to pay. I have always pushed myself long before CP got a hold of me and there are just some personality traits that stay with us no matter what. I ended up waking bent over alot because the pain was so bad from overdoing that I could not get myself upright. My pain mgt (the former one) put me in a back brace in an effort to keep me upright.
 
I have walked with a cane ever since 04 when I had surgery on both knees. My balance is way off and it helps keep me on my feet and not falling over.lol
 
I really feel for you because having disc problems in the thoracic spine is no place to be having surgery even if you could find a dr willing to do it. I imagine you would be like a broom stick if they ever did surgery on you and you would lose all mobility.
 
I hope that your current meds continue to work and give you some relief.
 
Susie


White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3609
   Posted 2/26/2009 4:34 PM (GMT -7)   
PALady Your very very perceptive, After I went on disability, I tried to keep active as much as I could, even though I was limited, I tried to be around people, and have friends, I even tried taking a drawing class or two, but as time went on I found I could do less and less, and I stayed at home more and more, and didn't go out. And didn't do things with friends as much. Since I have no family in the area, and my daughters both are married live 8 to 10 hours away. It is easy to isolate one's self. And yes I do blame myself for that, I am not saying it is not without reason, but I also know now that it was not the right thing to do.! I do understand about finances, and when things are tight it makes it all the more easier to become isolated. Boy do I know that! I guess the reason I am trying to warn others to try and avoid doing is because, things can happen in ones life that they never would even think or dream of, and it might or might not be of their own making. But it can put you in a very uncomfortable situation, when you really need to have your family or friends there, and there not! CP or not everyone needs to have and maintain a really good support system, it is that important. Thank-You PALady and Susie for keen observations your kind comments. White Beard

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 2/26/2009 5:28 PM (GMT -7)   
WhiteBeard,
i think you're raising an excellent point in terms of the need for a support system. And if I'm honest with myself, I know I isolated myself to an extent before I was injured, so after that happened my support system was weak to begin with. So I think it's excellent advice to make us all think about the choices we make.

Since I haven't made peace with this CP monster yet (I'm working on it with the help of everyone here) I believe that part of that will involve doing a few more things despite the pain. But finding some middle ground.

Sometimes it's also emotional. I hate to say it, but sometimes it's emotionally painful to be around people who are living full, "normal" lives. I know it's selfish on my part, but it is the truth - part of my truth. Part of why I avoid. I hope I'm making some sense!

PaLady

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13451
   Posted 2/26/2009 5:45 PM (GMT -7)   
PA yes you are making perfect sense. When my nightmare began 7-4-02 having the emergency resection in Mexico although that surgery literally saved my life, it also made me fecal incontinent. Sad but true and there are times I end up in a diaper because of this. First time I put one on I nearly died of embarrassment to myself. But I got tired of ruining clothes and throwing them away. Imagine trying to go somewhere and you may crap on yourself before you got there, been there & done that many times. Needless to say, my socailizing went down the tubes. Now, I do have some better control some days are better than others. We had hoped with me being put on opioids it would help but not alot. My best time so far is being put on Humira injections for the crohns and it was working so well till the bronchitis hit, cannot do the shots with fever, infection or open cuts, very risky drug. Now the bathroom problem is rearing its ugly head, I am sick again running a fever again alot of gut pain and coughing my head off. Sorry I got off track, but its very hard to maintain friends when you are not pyhsically up to it. They quit calling or coming around. I have two friends that has stuck by me no matter what. They have seen me at my very worst but they understand....Susie


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 2/26/2009 6:22 PM (GMT -7)   
Now those are true friends!

Hugs to you, Susie. I know you've been feeling down for awhile now. I hope that bug flies away soon!

PaLady

White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3609
   Posted 2/26/2009 11:17 PM (GMT -7)   
PALady can one ever make peace with CP? Is that even possible? At best I think you just learn to tolerate it! I think you make perfect sense! You are so right when you talk about it being emotionally painfull to be around people that are living full and "normal" lives. I can't begin to describe some of my feelings about that. and that is yet another reason that makes it easier to isolate one's self.!
 
I guess the thing that has brought all this home to me is, over the years, I have isolated myself, and as I said I have no family close by, I have had my wife of course, and her family, and for many many years that is all I have had! Well that is all coming to an end now, and I have found I had put myself in a very lonely and uncomfortable, isolated position. I won't go into any details, but our marriage has been in trouble for many many years, I started counseling over a year ago, she would not go, I had finally had enough and filed for divorce last month. Now during a time when I should have and when I need a good support system, I am now out searching for groups and organizations that  I can join and meet new  people and make new friends, when really because of my CP and disability I am hesitant, and I am apprehensive, and to say the least I am not happy about doing it. Heck I don't want to do it, but I know that I need to!!,  It isn't a question of what I want any more, it is a question of what I need, and I need to have friends and I need a good support system! And now is not the time to realize it and have to confront it and  try to correct it. That is why I said what I did, I don't want others to make the same mistake that I have. It really is not a pleasant place to be, and with the stress of it all, it does not help my CP either! Nor my Sleep Apnea! nor anything else! I am sorry if I sound like I am preaching, or venting, I do not mean to! Thanks for listening White Beard

Post Edited (White Beard) : 2/26/2009 11:25:34 PM (GMT-7)


Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9622
   Posted 2/27/2009 12:21 AM (GMT -7)   
AWE, WhiteBeard, so sorry that your marriage is coming to an end, I sought out a PM Psychologist, last year
and it has helped..It took me awhile of searching to find this psychologist, but like I said it helps, I've
isolated myself from my family cause they don't understand and cause it's also where my husband found a job..
I'm about 1,250 miles away from my parents and three brothers...Believe me it doesn't help when you look young,
sound young, and yet have a lot of problems..I do have friends here and they treat me better than my family did or does...
But in August when my daughter goes off to college it will hit me some,( I have only the one child as she has a heart condition
Aortic Stenosis and had open heart surgery at just 12 days old), so that's when it'll just be me and my hubby,
but I'll probably go back to my needlework classess to help make time go by..Sure hope you can find something too,
maybe you could help volunteer somewhere, just an idea..maybe join in a card playing group..
Good Luck to you WhiteBeard...
Susie, sure hope your fever breaks for you very soon....
Soft Hugz to all..........
**********************************************
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc, Fibromyalgia, Gerd, Enlarged Pituitary Gland
******** "We could never learn to be brave and patient if there were only joy in the world" from Helen Keller *********

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


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13451
   Posted 2/27/2009 12:32 AM (GMT -7)   
White Beard now more than ever you do need friends and a good support group. You are so right, its going to be very difficult to do this after being married for so long. Its a hard thing to bite off and chew on. But, for once you must put your needs first. You derserve to meet people and make friends and you very much deserve to find a good support group. Kuddos to you my friend. Divorce is a very hard thing to go through no matter what the circumstances are or aren't, been there & done that.
 
No, I don't think we ever full come to Peace with CP. I think its more of an acceptance issue than even coming to terms with it. There is a fine line there. I know if we take the wrong approach in fighting CP it can be more debilitating than the disease itself.  I went thru a meltdown and ended up with a great psychologist and she was very helpfull to me, not only with handling my crohns disease but CP as well.  I honestly cannot say I have totally accepted CP as my way of life, I am pretty close to there, that much I do know. Denial is an awful thing to deal with.
 
My new pain mgt dr asked me the first time she saw me how I dealt with so much pain. I told her that I had become use to it and she looked me right in the eye and said "yes people can become use to pain".  I explained further how I had been managing what life I had  left. I have a 3 yr old grandson that has been my glue for the past 3 years, he is why I get up every day. This child is my best medicine. She understood where I was coming from.
 
I do hope that you are in an area that will have groups that you are looking for. I think once you get get out in the open and not isolate yourself you will be amazed at how you feel. Just take it slow and easy and let things happen. Don't try to overwhelm yourself.
 
I really feel that you will find what you need. Of course you know this family is behind you 500%.........Susie


White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3609
   Posted 2/27/2009 6:14 AM (GMT -7)   
Thank-You Chartreux and straydog for your kind words and advice, I do have an excellent professional counselor that I go to regularly, biweekly, and without that I really don't know what I would do! straydog I do hope you are feeling better, I have got to, as I have a Dr. appt. this morning. Thanks for all your help and advice.....White Beard
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