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Old 06-03-2010, 08:57 AM   #1
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I no longer tell people I have CFS.

I'm so tired of telling people I have CFS and them saying dumb crap like "Oh, that must be what I have." or "I know how you feel, I'm always so tired." or "Must be nice to be able to take naps!" I'm so sick of it that I generally don't mention it anymore. If I do need to say something, I say I have a "health issue" and I've been working with a specialist and it's an autommune disorder.

Am I the only one who does this? And isn't it sad that I feel like I have to say something like that in order to get people off my back and make them realize that I'm not just lazy or making excuses?

 
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Old 06-09-2010, 07:38 PM   #2
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Re: I no longer tell people I have CFS.

It's been a long time since I've actually said the word "fibromyalgia" to anyone who wasn't a doctor or other health professional treating me. It's just easier not to go there. I say, "I have back pain," or "Some bad joints." At work, no one knows a thing about it, I'm lucky in that most days it's mild enough I can function normally. At my previous job, one person knew and he was a friend who didn't work directly with me.

My family knows, but it's easier if I don't talk about it. My father to this day cannot bring himself to name it or speak of it directly. My husband is the only one who deals with it in any sort of normal way.

Most of my longtime friends know, because we do some athletic things together and sometimes my participation is limited. But still, I don't normally use the "f-word."

 
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Old 06-10-2010, 10:10 AM   #3
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Re: I no longer tell people I have CFS.

Yes, I can certainly empathize with you, microwave. I was very open about having CFS when diagnosed 20+ years ago. But, after being shocked, and hurt, by the many critical and disparaging comments I received from family and friends (some unintentional, and many that were overt and clearly intended to insult), I learned to keep my mouth shut. As a result, it is difficult to have honest relationships with people, because most view my "lazy" lifestyle with suspicion (some even comment negatively on that). Having this illness requires a very thick skin, in more ways than just how we are perceived by others.

I have recently acquired a whole new batch of autoimmune illnesses (rheumatoid arthritis, peripheral neuropathy, celiac disease and possibly lupus). I've been quite open about these new diagnoses, and have received nothing but compassion and understanding.

It's unfortunate CFS (and FM, MCS, etc.) don't get the respect they deserve. Because, until they do, it is unlikely there will be enough funding for medical research to achieve much success in developing treatments.

 
Old 06-18-2010, 07:49 AM   #4
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Re: I no longer tell people I have CFS.

Sweetie, I know exactly how you feel. It burns me up. I am in bed by 5 in the evening and sleep until 8-9 the next morning. I don't sleep all that well but I stay in bed. The little time that I am up, I wish I didn't have to be awake, because I am so exhaused and hurting so bad. I don't know if it'll make you feel like your not alone, sharing this, but I will, just incase.

I just went through a nervous breakdown (ok now) but it started after my PCP took my medication because I have an ulcer, and it was giving me strength to function. I cried for 5 hrs straight. Then I start feeling high stress and can't deal with anything. My ex is giving me hell for not getting the house work done, my daughter giving me hell because sometimes I was not able to take her somewhere. She has a defiant disorder. Her behavior skyrocked when I got sick again, she was so mad at me. One day, she ended up knocking about 10 holes in the wall. She picked up some medication (dog's allergy meds) and through it in mine saying there is more pills for you to get high on, and she knows good and well mom doesn't do that. Well neverless, it really hurt. One day I asked them to hurry up and get home, and they take the long route despite me feeling so sick. I ended up screeming no one gives a XXXX if I am sick & busted out crying. My ex goes on to say if someone was as sick as you say you are, they'd be dead, and how I needed to be put in a nursing home. My daughter says I'm not sick, I'm just lazy. After she knocked all those holes in the wall, I ask her why she won't take medication to calm her down (really believe she has ADHD), but her response was, she didn't want to turn out to be like me. That's when I had my breaking point. I can usually take my family picking, but I had never had them hurt me so bad. I begged them to lay off because I felt like I was having a nervous breakdown, just made them get 100 times worse.

And his mom. OMG I sware. She has diabetes and just diagnosed with thyroid disease. And I can sympathize with her, esp when she is saying she gets up out of bed and doesn't feel rested and stays so tired now, (the dr says her thyroid medications have to regulate to help her), and I could even tell she was tired. But you know what happens when I tell her I understood, she just shot me down big time. She's at my house just visiting, and she tells me how she did about 50 different things that day, alot of things she didn't have to do. So what, she's like superwoman, can fight past the fatigue and do whatever she wants anyways. I don't get it. I'd hate to be comparible, but there is no way she has the severity of fatigue that I have, and able to do all that.

We need to define between lazy and chronic fatigue, I am getting sick of all the comments and crap people say too. To me, lazy is like people who can get out and run around all day long and do whatever they want, yet however, at home, will not clean their house or do anything, because they say they are too tired. To me, that defines lazy. Someone laying around in bed all the time sick, thinking life would be easier non-existant, and suffering, doesn't equal laziness.

People like that who give you hell for being sick are just so dumb and clueless to what a chronic illness is. How do you make them understand? I don't really know. I guess you just have to learn to deal with the bull. I usually just give it back to them, when they are doing that to me. LOL.

So, are you seeing a specialist to see if this is autoimmune or just telling them that, because it probably wouldn't be a bad idea. My problems started out just as fatigue here and there until it became chronic, and then the muscle pain followed. I was originally diagnosed with CFS and Fibromyalgia, also told it was mild Lupus through a rhematologist, and autoimmune dysfunction through another doc that diagnosed the CFS. I've had trouble getting the diagnosis even though my ANA and RNP are both positive and I have clinical symptoms. But I think I have proof now they can't argue with. If you do want to see if it's autoimmune, don't let a general practicioner make that decision for you, they have a totally different way of looking at it than a rhematologist does.

 
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Old 10-28-2010, 07:55 AM   #5
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Re: I no longer tell people I have CFS.

I agree, it's frustrating. I'm happy to have a diagnosis finally though... I've complained about my symptoms for 12 yrs.... Well, I try not to complain. I haven't talked to very many people about it. But, my mom & husband always said "I know what you mean", "I'm tired also", ect. But no one really understands how hard it is... My husband always said "You never feel well". But, since I finally have a diagnosis, it seems like they finally understand alittle more. But, I still don't tell others.

 
Old 01-31-2011, 05:49 AM   #6
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Re: I no longer tell people I have CFS.

My 16 yr old daughter says I am a lazy piece of crap and that my life is worthless. My son has told me that I need to suck it up and quit being such a baby. I have been told I'm sick because I take medication. That it's all in my head. There is no such thing as fibromyalgia. That my problems are really mental, not physical. My family, friends, my kids, I have no moral support whatsoever. When I landed in the ER recently, I was told prior to go in the other room, tired of hearing you moan, while crying in pain I get screemed at to shutup. A family member rubs in all the time how she has thyroid disease and diabetes and all that stuff wrong with her back and gets out every day and does what she wants. I was dehydrated and puking up green stuff and blood, gastroenterologist said for me to go to the hospital, they wouldn't let me go. Getting a diagnosis of an autoimmune disease did not help at all. My doctors, ER, leaving me in pain, I can't handle. I've been so mentally exhausted from dealing with the fatigue, I just started losing my will to try anymore. Am sick of waking up every day just to feel like a dog, and to be treated like one for being ill. They act like you can't be sick 24 hrs a day. I was told my blood work was false, that I can't have autoimmune disease, that I am not that sick. But this is the same person that watches me cry, watches me suffer, watches me be dysfunctional to life. Fatigue is like having your life sucked right out of you. You need energy to thrive.

 
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Old 01-31-2011, 09:42 AM   #7
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Re: I no longer tell people I have CFS.

Quote:
Originally Posted by neveragain444 View Post
My 16 yr old daughter says I am a lazy piece of crap and that my life is worthless. My son has told me that I need to suck it up and quit being such a baby. I have been told I'm sick because I take medication. That it's all in my head. There is no such thing as fibromyalgia. That my problems are really mental, not physical. My family, friends, my kids, I have no moral support whatsoever. When I landed in the ER recently, I was told prior to go in the other room, tired of hearing you moan, while crying in pain I get screemed at to shutup. A family member rubs in all the time how she has thyroid disease and diabetes and all that stuff wrong with her back and gets out every day and does what she wants. I was dehydrated and puking up green stuff and blood, gastroenterologist said for me to go to the hospital, they wouldn't let me go. Getting a diagnosis of an autoimmune disease did not help at all. My doctors, ER, leaving me in pain, I can't handle. I've been so mentally exhausted from dealing with the fatigue, I just started losing my will to try anymore. Am sick of waking up every day just to feel like a dog, and to be treated like one for being ill. They act like you can't be sick 24 hrs a day. I was told my blood work was false, that I can't have autoimmune disease, that I am not that sick. But this is the same person that watches me cry, watches me suffer, watches me be dysfunctional to life. Fatigue is like having your life sucked right out of you. You need energy to thrive.
Reading your story just makes me want to give you a big hug
& tell your family & friends off!
Since my last post I have been diagnosed with Fibro. I thought my Rhumetologist was nuts until I got my first flare up! I've had CFS since 99 & been able to deal with it. Then for a long time I had awful headaches most of the week, every week. Then came the upper back, neck & shoulder pain. That's when I was diagnosed with Fibro. When I was told this, I cried. I was so busy pushing myself 24/7, how was I supposed to learn to slow down & rest? My Rumetologist wanted me to get stuff done for 15 mins, rest 2 hours, 15 mins then rest & so on. Oh, and exercise 5 mins 3x a week. I was so used to putting all of my energy into what needed to get done, exercise was a luxury... Well, I can't stick to the schedule the Dr gave me but I have learned to pace myself. I have 4 kids & a farm, not easy. Well, I narrowed the farm down allot & my husband took over most of it. The kids do more chores & I learned not to worry about the little things. I rest when I need to rest. I'm on Cymbolta for Anxiety (wonderful!) so I don't stress constantly which in turn keeps me from awful flare ups most the time! Unfortunately, I always feel awful but it's manageable. I do tend to over do it sometimes & stress sometimes, I pay for it.. But could be worst... I have been tested for everything... or so I thought... I found out I haven't been tested for ms so have to get that done soon...
I think sometimes my husband is supportive... But he really doesn't understand & makes it very hard for me... I don't expect my kids to understand because they are so young still (11, 8, 7 & 1). But, they aren't hard on me like your family & friends are. My husband can be a jerk, but it isn't intentional, it's because he just doesn't get it... I don't talk to my family or friends about it. My mom & sister know, they are supportive. If someone doesn't believe in Fibro I don't talk to them about it.
Anyhow, I'm hoping my story will be able to help you some...
I really thing you should see a Rhumetologist. Your primary Dr should test you for Lupus, Lyme, Vitamin D levels & MS among other things... You don't feel good for a reason. You need to find out why then learn to manage it. Yes, it is manageable. If it's Fibro, MS, ect then don't over do it or stress... I know, easier said then done... But you need a diagnosis asap so you can be on the right medications to help you. Cymbolta worked for me in just a few days. I normally stress 24/7 & worry constantly about everything, not anymore...
BTW, my last flare up made me sooo sick, I didn't know that was a symptom until it happened...
You can't make your family understand. But need to try & not worry about what they think. I know it's hard, but you have to. You need to only work on making yourself feel better & yes, it takes time. You have to learn to control it. Don't talk to them about it, it won't do any good.
As for your friend, I wouldn't stay friends with her... She's toxic, only makes you feel worst. You have the choice to choose your friends & that doesn't seem like a very good friend.
My last flare up, I called my closest friend to see if she'd run to the store & get me some Sprite because I couldn't stop throwing up. So she did that then didn't want to leave my side. That's a true friend She was also there in the delivery room with my last baby & a huge support! She's always there when I need to vent, ect.
Anyhow, Sorry so long. I just know how frustrating, stressful & depressing it can be ontop of feeling awful.
You are not lazy & worthless! I'm ashamed of your friends & family! They should be supportive & understanding!
Oh, & I've had CFS since 99, Hypothyroid since 03, I have a degenerative disk & arthritis in my back & yes I was able to deal with it. But once the Fibro hit with pain & sickness, I can't work through it anymore... This is the only thing that has held me back. Also, I spent so many years taking care of everyone else, it's been difficult to learn how to take care of myself... It has to be done though. You need a good quality of life. You need to take care of yourself. You can learn how to live a happy fulfilling life even when sick It is possible!
Anyhow, I will stop right now. If you need anyone to talk to, I'm here! Message me anytime ok!
Let me know what tests have been ran, what meds, diagnosis, kind of Dr you have been seeing ect. I will do my best to help you get the help you need.

Hugs,
Tori

 
Old 01-31-2011, 12:00 PM   #8
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Re: I no longer tell people I have CFS.

I do know what is wrong, I was originally diagnosed with CFS, autoimmune dysfunction, Fibromyalgia, mild Lupus, back to Fibromyalgia (due to the doctor I stuck with), but I have found out I have mixed connective tissue disease. The fibromyalgia is now in question after having the diagnosis for over 10 years. I've had low b-12, and vit d, but my b-12 is back to normal. Tested positive for EBV, ANA, and the RNP antibody didn't show up until last year, but they hadn't been testing me so figure that's why. I have been checked for MS sometime ago, didn't have it. I have GI & bladder problems, my lungs need a checkup, they won't quit hurting. I have neuropathic problems, not sure why. I did really well on Plaquenil the start with, decent after a couple of months, and then I caught this cold, and it isn't working for me at all now. I'm seeing a rhematologist in april. I take ambien to sleep, lexapro when my anxiety really flares, nexium, carafate, plaquenil, elmiron. I have no meds for my pain now unless I take Ibuprofen but my ulcer won't apprieciate it too much. I have pain that gets excrusiating in my back, they won't diagnosis it, and my PCP doesn't want me on meds because of the possible side effects, and I am dealing with this in a horrific way, he knows all about it, but I don't get it. The ER gave me lortab which was part of the reason I was there, it was making me vomit, so I gave that prescription to my dr and I'm just left to deal with it, without nothing, when he knows I can't. If the ER could give me Lortab, he could have prescribed something else. Makes me feel like I have no one I can turn to for help. I'm in serious need of help, and it's pointless to ask. It's okay, sometimes my family just picks, and I just give it right back, sometimes they are serious though and that kinda hurts, but whatever I guess. I feel sorry for my kids, it was rough on them, but I would give anything if they could just understand. Your right though, you waste your breath trying. It's hard for me not to complain, I'm sure they get sick of hearing it, just like I get sick of feeling it. That's life for ya. My biggest fear is that this won't be manageable, if I go on immunosuppressive medication, that something else awful is going to happen. I just don't see much hope anymore. That's what I have too is pain in my upper back (thoracic) and it radiates up into my shoulder, in my neck, into my jaws, and gives me horrific headaches. It gets tight, burns, I get tingling there, cooling sensations (like with icy hot), get numb. Did you get an MRI? My dr has never offered to do one, I'm starting to think he doesn't believe me or something. My muscle pain is manageable but this back pain is more than I can cope with.

Last edited by neveragain444; 01-31-2011 at 12:03 PM.

 
Old 01-31-2011, 01:08 PM   #9
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Re: I no longer tell people I have CFS.

I'm glad you are going to see a Rhumetologist! Is there any way you can get in sooner? I Nuerologist is another option... I'm wondering if that would be more helpful... I would definitely write a list of all of your symptoms & another list of what you have been tested & treated for along with all positive results...
It will be manageable, just takes time
I've gotten so depressed at times over the last 12 yrs, but it would pass. It was just frustrating knowing I didn't feel well, didn't know why, no one understood, no diagnosis, ect. there were times I just wanted to give up on life... But I'm a very strong & stubborn person so no way I'd let that happen...
I've had an MRI on my back. I do think there is more than the bad disk & arthritis just need to find a good Dr who will work with me. I went to a neurologist & she wanted to run the same tests I already had done. I wasn't willing to pay for them all over again ($500 out of pocket). I haven't had one done to be tested for ms though...
I take Flexeril (muscle relaxer) for sleep. I also take Tramadol for sever pain. But, I don't take meds unless I really have to... I also take Armour for Hypothyroid then vitamins & minerals like Papaya Enzyme, Omega, Magnesium, Calcium, D3, ect...
It sounds like you have allot going on. I do think once you find out the reason for all of this you are going to do so much better!
I spent years working twords goals... Now I'm just trying to enjoy life.

 
Old 02-01-2011, 12:39 AM   #10
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Re: I no longer tell people I have CFS.

I am new to this thread or rather say topic. Just reading what yall have wrote made me think "gee that is my story" or parts of each one together. I started off having migraines horrible migraines 12 years ago when my last child was a year old. Then as the years progressed, I started feeling all over aching almost like the flu. It mainly stayed in my upper back/neck shoulders and down my arms. The depression and panic attacks started between the two of these actually after the migraines but I think 2 back to back car accidents made me start having panic attacks because I seemed to have them when driving or the thought of driving and wrecking. I also have them while I sleep. I will wake up feeling like someone is going to kill me or come in the house. It is all so weird. Anyways after seeing tons of docs for this that and the other, I saw a mental health doctor who gave me zoloft and xanax. well this did okay with my anxiety but I still had the pain. I went to a rheumatologist who diagnosed me with very bad arthritis in my spine and several herniated discs. He doesn't think surgery is an option so he gives me pain meds to help with the pain. However, I have become physically dependent on them and not happy about that situation either. I also have been diagnosed as hypothyroid. Okay so I sound like a basket case right? well, during all of this, I am extremely exhausted. I went to New York with some family and actually had to take some ADHD medicine with me that I got from a friend just to keep me going. I felt like I was going to drop. What is it about cfs (if that is what it is with me) that makes u so tired. Is threre something in your blood that is deficient? I need to do something because I am going to lose my mind. Oh and by the way I have to have both of my knees operated on! Crazy huh and did I mention that I am in my early 40s?

 
Old 02-01-2011, 07:15 AM   #11
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Re: I no longer tell people I have CFS.

Very likely, I wouldn't be able to get in and see the rhematologist early. But if I can keep my back pain calm, I'll survive this. I finally broke down and went back to the doctor this morning and told them I just couldn't take it anymore, and he gave me a narcotic. I have trouble taking up for myself. I should have never let them do me that way the start with. I should have demanded an MRI along time ago. I think I have arthritis in my neck because of the way it pops, frequently like 1/2 a minute to minutes apart. I also think I have a pinched nerve in my thoracic spine but getting them to do an MRI on both my neck and thoracic area, that'll be the day. I'm almost afraid to ask, because what if the problem is in my neck, and not my back, and I have my back scanned and nothing shows up. ((((((((( .. I had the worst night of my life last night, my ex-husband was actually sympathetic but my daughter, the more I'd cry, the more she'd yell. I know she loves me deep down there somewhere lol, but that really makes you question it. I know she's mad at me for being sick, but who screems at you when your balling crying.

Oxygirl, no you are not a basket case, sounds like you have a lot of things to deal with. I was diagnosed with chronic fatigue syndrome through my ANA testing being positive. So the RN that diagnosed me thought that chronic fatigue syndrome was due to an autoimmune dysfunction. She told me I could count on being sick the rest of my life. I now know that I have mixed connective tissue disease but it took over 13 yrs to find that out. Problem with doctors, they overlook these ANA tests too easily. If you have a positive high ANA, severe fatigue, muscle aches, without another darn thing showing up in your blood work, you likely have an autoimmune disease, especially with repeated results. I would recommend anyone with CFS to have the ANA test done, and don't just take your doctors word for the results, get a copy of them. I have normal kidney function, normal ESR, normal RF, most all my blood work is pretty normal, except vitamin deficiancies I had last year, and my ANA & RNP levels, no major organ damage, though I'm in question of a possible lung problem now. Only organs I have chronic inflammation in is my GI tract and my bladder. Primary care doctors overlook this if you don't have elevated ESR or RF, swelling, or kidney damage, and they are dead wrong for doing that.

Last edited by neveragain444; 02-01-2011 at 07:18 AM.

 
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