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LBL
Regular Member


Date Joined Aug 2008
Total Posts : 20
   Posted 8/18/2008 12:10 PM (GMT -7)   
Hi everyone,
 
I'm hoping to join a support/discussion group with the same condition as I have so I don't feel so all alone.  I have fibro, pretty much diagnosed it myself from all my symptoms and my Doctor also concurs.  I am in the process of trying to find some relief from the pain with not much success.  I was on some antidepressants for years which helped to mask the fibro (didn't know I had it way back when) but now I am off all meds and am in incredible pain all the time.  My Doctor just put me on amitriptalyne (sp?) but I've only been on it for 1 week and so far no improvement.  My blood tests came back with a high ESR and white blood count.  Going to see a Rheum specialist next week.  Possible going to try lyrica but I'm scared of the side effects. 
 
I feel that I cannot work a regular job anymore.  I am a secretary and cannot make it through a day.  I am thinking of applying for social security disability but not sure if I will get it.
 
I will be reading all the posts here to familiarize myself with all of you and hopefully have some of my questions answered before I ask ones that have already been asked and answered.
 
Great to meet you all!!!!

getting by
Forum Moderator


Date Joined Sep 2007
Total Posts : 40601
   Posted 8/18/2008 12:27 PM (GMT -7)   
Hi LBL,

Welcome to HealingWell. I am sure that you will learn a lot by reading. There is a fibro 101 thread that is the second thread on the first page. I think that you will find it interesting. Also we have Who's who in the land of fibrofog. That will tell you a little about everybody here.

I truly think that you will be happy that you joined us.

Hugs, Karen
  Moderator-Depression and fibromyalgia
 
fibromyalgia, Chronic fatigue, depression,allergies


ErinAnn
Regular Member


Date Joined Jul 2008
Total Posts : 50
   Posted 8/18/2008 12:29 PM (GMT -7)   
Hi LBL and welcome to the forum. I am fairly new to this forum as well and dont always post but I do visit this site often to see whats up. Sorry that you are having so much pain, and I hope things go better for you in the future. There is a lot of really good information on here and some very nice people.
Yours Truly,

Erin Ann


kelly71
Veteran Member


Date Joined Jun 2008
Total Posts : 726
   Posted 8/18/2008 12:29 PM (GMT -7)   
LBL,
 
Hello and welcome to the family! :-)   I do hope that you'll be comfortable enough to post your questions-because just when you think that you are all alone, you'll find someone who feels exactly the same way you do.  As always, a newbie is advised to read Fibro 101.  It really does have a lot of great info.  LOL-oops!  Looks like Karen (getting by) already beat me to that advice. blush  
 
I had to go on disability, but at the time, I didn't have a dx of fibro-just chronic pain and back problems.  I think that is why I was approved for short term disability, because I have heard that it's really hard to get disability for fibro (or lupus).  But, I don't know for sure. rolleyes
 
As for you pain, I strongly suggest that you talk with your doc about pain management.  Some of us are so lucky (and I'm so jealous, LOL) and can manage on OTC meds or the Magnesium/Malic Acid combo.  But, then there are others (including myself) that need stronger meds.  If your doc is familiar with fibro, he/she will know that everyone's pain levels can be different.  I hope your rheumy will help you find some relief.
 
Anyway, if you've been lurking around and reading, you'll know that I could talk all day.  I really think that I'm the #1 babbler in this family. yeah    Again, welcome, and feel free to post away! :-)   

FINALLY dxd on 06/13/08
Vicodin, Neurontin, Ibuprofen for pain-which doesn't help, BTW
Zoloft & methadone (NOT for pain) for sanity-which doesn't help, BTW
Klonopin for anxiety (Guess what?  Doesn't help!)
 
"I'll take the Chivas instead"
-Kelly Clarkson


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17101
   Posted 8/18/2008 12:45 PM (GMT -7)   
Hi, LBL, and welcome to the fibromyalgia forum.  I see you have met several of our great members.  This forum is so neat because everyone really DOES care about each other.  I, too, see you have met our #1 babbler, Kelly.  I am the #2 babbler!  turn
 
I am one of the lucky ones that takes ibuprofen and Tylenol for pain and malic acid/magnesium supplements for pain and fatigue.  This has given me control of the pain.  I definitely am not pain-free, but I can manage the pain and live a full and enjoyable life. 
 
A rheumatologist may be able to diagnose you.  You may be on the antidepressants again because they seem to help fibromyalgia pain for some.  You, also, may have good luck with the Lyrica.  We have some members that hate it and some members that swear by it.  You will never know unless you try it.
 
Meanwhile, I'm so glad you joined us and I am looking forward to hearing more from you soon.
 
Sherrine
Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7


LBL
Regular Member


Date Joined Aug 2008
Total Posts : 20
   Posted 8/18/2008 1:02 PM (GMT -7)   
Thanks all.  I will fight to get disability even if I get refused a few times, I will just keep appealing.  I truly cannot work a full day anymore and if I manage to, I am completely useless to my 9 year old child.  All I can do is go home and melt into bed and then I usually start to cry because of all the energy I spent all day long working.  And the pain is so much more than physical pain.  I have  afeeling of just not feeling well all the time.  Flu like symptoms, aches, pains, dizzy and some times feeling incredibly full to the point I cannot eat anything for hours (and I'm fat! you'd think I'd be thin lol).
 
Ok I will continue to read and write to everyone.  Happy to have met you all.

d2parrotperson
Regular Member


Date Joined Aug 2008
Total Posts : 320
   Posted 8/18/2008 2:41 PM (GMT -7)   
Hi LBL. Those physical symptoms you describe are part and parcel of FMS. You're not alone! Welcome~!
150mg Azathioprine
Lomotil
Iron
Nexium 2/day
Fentanyl patch
Oxycodone
Baclofin
 
Crohn's, Fibromyalgia, Several bad discs, bone spurs, Osteoarthritis, Osteopenia, Reflux, Stenosis, Stricture
2 resections
 
Stephanie
 
When I am weak, then am I strong


Meggie
Regular Member


Date Joined Jul 2008
Total Posts : 408
   Posted 8/18/2008 4:46 PM (GMT -7)   
Welcome LBL,
Your situation is so similiar to me and so many others here. I to had my fibro masked by antidepressants, they helped just enough to get me through. Now that I know what is wrong with me the antidepressants have been increased and I do feel a little better. I have a long way to go and there is a lot to learn here, the people really care. I to was feeling alone, very alone (even though I have a house full family). My husband has said that he has noticed a change in me since joinging the forum, he said I seem happier and more confident in taking control of my illness. That's because everyone here is so wonderful. They are full of great advice and caring thoughts. You will be happy that you joined us.

Meggie

Southernlady
Veteran Member


Date Joined Jun 2008
Total Posts : 844
   Posted 8/18/2008 5:54 PM (GMT -7)   
Hello LBL and welcome to our family.  This is a wonderful place for caring and sharing.  I'm so glad I found it about a week after I was dxd. with Fibro. 
 
I too, am thinking more and more about filing for social security disability and don't know where to start.  Someone told me you had to be off from work for a year before you can apply.  Does anyone out there in Fibroland know if this is true or not?
 
LBL, we hope to hear from you often.  When you have questions just ask.
 
God Bless!
Shannon
Of all the things that I have lost, I miss my mind the most!!!!


Marlee2
Veteran Member


Date Joined Aug 2007
Total Posts : 6067
   Posted 8/18/2008 5:58 PM (GMT -7)   
Hi LBL and Stephanie and welcome to our family. This is a great forum and I'm glad you joined.
 
luv and hugs
Marlee
Forum Moderator Fibromyalgia
 
Fibro,Sjogrens, Anxiety, Gastroparesis, IBS, Gastritis, Allergies, High Blood Pressure, Low Blood Sodium and Osteoarthritis
 
Amitriptyline, Celexa, Xanax, Synthroid, Zyrtec, Micardis, Spironalactone, Tylenol, Reglan, Lidoderm Patches and Tramadol
 
Co Q 10, Super B Complex, Extra B12, Multi vitamin


Sue2z
Regular Member


Date Joined Jul 2008
Total Posts : 368
   Posted 8/18/2008 7:02 PM (GMT -7)   
:-)  YOU ARE SO NOT ALONE, When I first got it , it just kept getting worse and worse and the doc wouldnt beleive me and I had to fight to get any treatment.  Make sure you take the Lyrica , it relaxes you a little and helps with the pain, hopefully that will be all that you need.  I am very alone, I have no friends and no contact with my birth family, which is why the forum is so important to me. So glad to hear you are seeing a rheumy.  :-) :-) :-)   Hugs and welcome.   sue2z
Fibromyalgia, ulcerative colonitus, arthritus, bi-polar
norspan patch, valium, prothiedon, lyrica


donnaeil
Veteran Member


Date Joined Jun 2006
Total Posts : 1156
   Posted 8/19/2008 12:25 AM (GMT -7)   
HI Stephanie,

Welcome. I also wanted to tell you that it sounds as if you have Chronic Fatigue also. Ask your doctor about that.

Take care,
Donnaeil

GamJill
Veteran Member


Date Joined Jun 2008
Total Posts : 1279
   Posted 8/19/2008 7:51 AM (GMT -7)   

Hi LBL and welcome!

I have not worked since the fibro hit me hard 4 months ago. I can relate to the grueling work week- I was having trouble keeping up with it before the fibro! Our bodies are just not the same with this. Hang in there with the anti-depressant. I'm on Zoloft and it took 2 to 3 weeks where I started noticing any changes.  

I just applied for Social Security Disability and I have been fortunate that I have had very "nice" and "helpful" staff guide me through this. I was told that almost "always" you will be turned down the first time through the process.

Good luck with your appt. next week and let us know what they say. GamJill


 
 
Fibromyalgia, Depression, Anxiety, TMJ, Arthritis/neck
 
Zoloft, Tylenol 4000 mg., Zanaflex


LBL
Regular Member


Date Joined Aug 2008
Total Posts : 20
   Posted 8/21/2008 9:43 AM (GMT -7)   

I have decided to postpone my SSDI interview which was supposed to be this morning for Sept 2nd which will be after my appointment with my new Rheum. Dr.  I figure they are going to have to get my medical records anyway so why not have them all taken care of before I go.  From other websites and other people I have spoken to it seems that is is standard procedure to get turned down intially for SSDI and then once you go before a judge you almost always gets it.  I also have Osteo Arthritis in my knees so having both Fibro and Arthritis together gives you a better chance.  I can't believe the hoops you have to jump through to get money that is yours, that you earned when you are disabled.  So many people are able to get SSDI and really have nothing wrong with them which makes it harder for those that do have something wrong with them because the Gov't is so cautious.  Anyway it seems that Fibro is becoming more and more a ligitamate recognized disability which is a good thing.

 

My PCP is not very sympathetic to the condition because when I asked for another prescription of Vicodin for those nights that I need is badly she said it is only to be taken when my siatica acts up and that she will not be refilling the prescription again.  I am very careful about taking it because I know how additive it can be but it does help when I'm lying in bed in extreme agony.  Does anyone else take Viocodin for their Fibro pain?


Speppy
Regular Member


Date Joined Aug 2008
Total Posts : 28
   Posted 8/21/2008 3:18 PM (GMT -7)   
Hi LBL!

I am new here too. I am in much the same position you are. I have been at my job for almost 6 years and now I am missing so much work that they are basically trying to push me out. I am on FMLA (Family Medical Leave Act) so they cannot just fire me, but they are headed towards getting me out. My BF is telling me to pursue SSD and I don't even know where to start or if I would qualify and if I do -- what then?
I am scared. I am an independent person and I am scared I will lose everything. I have bills, rent, student loans, car payment, etc etc etc. But if I cannot make it through one day at work...what choice is there? I have been paying into SSD for about 20 years...so I earned it right? I'm 35 and it just has such a stigma attached to it. I know my Mom would just be so disappointed in me. Well, hell - she already is, so what's the difference. I need to take care of ME for once and not everyone around me, right?

Anyhow, I take vicodin when I have flares or really bad pain days. My rheumy used to give it to me willingly (for the last few years), with 2 refills even. Now just recently he is reluctant to prescribe it and gives me one script and makes me basically beg for more. It takes the edge off my fibro pain and makes me almost sub-human again. It stops me from crying myself to sleep at least. I take it sparingly. I suffer and suffer and then I give in and take one.

So nice to meet you. Keep us updated on your Rheumy appt and how your SSDI interview goes. I am going to start looking into it myself.

Hugs! :-)
Speppy

Fibromyalgia since 1995 (dx 1998)
Chronic Fatigue, Migraines, TMJ, Carpal Tunnel, Insomnia, IBS, Neck Injury C5/C6, allergies etc etc etc...
Ultram, Vicodin, Ambien, Zanaflex, Xanax, Advil (and they don't work for me...), Zyrtec-D

'Be kinder than necessary because everyone you meet is fighting some kind of battle.'


getting by
Forum Moderator


Date Joined Sep 2007
Total Posts : 40601
   Posted 8/21/2008 3:48 PM (GMT -7)   
I take norco for fibromyalgia, which is like vicodin, but stronger. It is 10 mg with 325 of tylenol.

I can sympathize with both of you. Trying for disability isn't easy. I have to reapply. I got denied by the judge because my doctor wasn't a doctor, but a physicians assistance. She was familiar with fibro because she had it. Now I see a real doctor, but I was told I should see a rheumy too. So I guess that is next.

I hope that you all have a wonderful day,
hugs, Karen
  Moderator-Depression and fibromyalgia
 
fibromyalgia, Chronic fatigue, depression,allergies


LBL
Regular Member


Date Joined Aug 2008
Total Posts : 20
   Posted 8/21/2008 4:21 PM (GMT -7)   
Speppy and Karen, you 2 sounds just like me and there is some comfort in knowing that I am not alone with this.  I'm also happy to hear that your are taking a controled substance like viocodin because when I do finally give in and take it I feel guilty like I should be able to take 2 advil and let that do the trick but some nights it is unbearable, the pain throughout my whole body.  Today I'm having a "good" day and probably won't have to take it tonight but that is also because I called in sick so i was able to rest a great deal.
 
Speppy, I'm sorry that your mother is dissapointed in your and not supportive.  I am very lucky in that my mother is pshing me to go on disability and realizes the pain I am in since she has dealt with Crohns Disease all her life and knows what it's like to have to work when feeling so lousy.  But my mother is not rich and neither am I and it's very scary to quit work, use her savings in the hopes of being able to pay her back when I get on SSDI.  I just know I will be approved, maybe not right away but I will not stop until I get it.
 
Has anyone found that eating or not eating certain foods can make the Fibro better?  I read that carbs are bad for Fibro and to follow a diet similar to that of someone that is hypoglycemic (sp?) is the way to go.  Also, yoga is supposed to be very good for fibro and my Dr keeps telling me to try and exercise but I just can't I'm in too much pain.

Post Edited (LBL) : 8/21/2008 8:18:36 PM (GMT-6)


Irish Babe
Veteran Member


Date Joined May 2007
Total Posts : 1371
   Posted 8/21/2008 5:29 PM (GMT -7)   

Sorry ladies, the post I just wrote went to the Land of the Lost. Anyway, I just wanted to welcome LBL and Speppy to the forum and to share a few ideas for food. A few yrs. ago I had horrible unrelenting pain in my left heel, couldn't sit, stand, walk, or sleep. I read somewhere that bananas can cause prob w/ pain. Of course, I had a delicious banana every day. 48 hrs. after I had my last one the pain subsided. Try to eliminate different foods, you may have prob w/ some of them. I went to PM dr. he said give up fruit, carrots, and potatoes, not all carbs, keep salads, broccoli, cauliflower, proteins,etc. Avoid, white bread, if you eat bread, go for whole grain. I can't eat beef, so I eat a lot of chicken, just not at one sitting. lol I can't handle dairy foods, haven't had milk in almost 20 yrs. Keep up w/ vitamins.

Speppy, I'm sorry you're having a prob w/ your mother. But right now you have to take care of your health, live your life, do what is best for you. Maybe your mother will come on board and be supportive, and maybe not. You still have your life to live, you need to make choices to help you. I'm so sorry you are in such pain, maybe you should keep a pain journal to share w/ you dr. It may help to explain what is going on in your life right now.

You are both in my thoughts.  God bless.  Alice.


Piercings
Regular Member


Date Joined Aug 2008
Total Posts : 326
   Posted 8/22/2008 12:24 AM (GMT -7)   
Hi and welcome LBL. One of the things that I noticed in your posts earlier is that you seem to have the same embarrassment/stigma/shame that a lot of people have about having to take any kind of narcotics. Please don't. It's been said over and over again in these threads and I will repeat it again. Everyone's pain experience is different. Some are able to get by with just OTC medications and dietary supplements, some require low level narcotics, some require mid-level narcotics, and some require heavy narcotics. Just because you may need narcotic pain medications to feel better and be more functional physically, this does not make you a bad person. Our society has a stigma for those that use pain meds. Especially in some of the older generations. But there shouldn't be. If you are taking medication to improve your quality of life and/or to be able to function like "normal" people - why should there have to be any shame.

I am one of those people that are at mid range narcotics. I am on 2 of the 20mg Oxycontins per day with up to 3 of the 5mg percocets for breakthrough pain. These are what allow me to be able to work. I have been on pain meds before and am able to be off of them for a while when the weather warms up. During the winter especially, if it weren't for the pain meds, I would miss a lot of work - or if I was at work I"d be miserable and not nearly as productive and accurate in what I do. For me, it improves my quality of living and allows me to be able to still contribute to society by paying taxes via payroll from my company, it allows me to still provide the services to my employers and the clients, to be able to get out and do things. I'm much more active and am able to exercise and spend time doing things with friends - instead of being home, in pain, miserable, and feeling like I have to live vicariously through other people. There is no reason to have to be ashamed of using a medication.

Abusing it is another story. If you're out selling your pills on a corner or acting like a junkie and crushing pills so that you can shoot them up...then yes, that is something wrong and inappropriate. Those are the people that our society seems to think that pain patients are, but we are not. And you aren't either if you are using them as medication and not doing it just for a high.



Wow. I'm sorry. That kind of turned into a rant (just a little). But it's exactly where my heart is. I've seen people who flat out ABUSE their pain meds and it makes me angry because it causes the types of feelings that you've been having about taking controlled substances. And, it makes me sad that we end up feeling guilty or ashamed because someone might look at us the way that they look at the bum on the corner unkempt and loaded outta their mind on dope. I hope you understand that it's OKAY to use pain medications if you need them.

LBL
Regular Member


Date Joined Aug 2008
Total Posts : 20
   Posted 8/22/2008 5:51 AM (GMT -7)   
Hi Piercings and thanks for your input.  My concern, and that of my doctor's is that these narcotics are addictive and I do not want to get addicted to them so I am careful about taking them and when I take them.  I do, however, want a doctor that recognizes that I need it and doesn't give me a hard time about taking one every night or so to deal with the pain.  How do I go about telling my doctor this or finding one that will understand

breathofsighs1
Regular Member


Date Joined Aug 2008
Total Posts : 74
   Posted 8/22/2008 8:42 AM (GMT -7)   
Hi LBL,
Welcome. I am also a newbie about a week now maybe and these folks are the best!
I am on disability after my Doctorr told me that I just couldnt keep on trying to work. I filed on my own and was turned down. My Doctor then gave me the name of a really sweet attorney, who also just happened to be a nun. She started doing all the paperwork the right way and we had an an apoinment to see a judge for a hearing. Approximately 13? days  (YES, I said DAYS) before seeing the judge I had a heart attack. I had 2 stents placed and was sent home within a few dyas. No big deal nowadays i guess. But I kept my appointment with the judge even tho i was totally washed out, family member drove me. He asked me if i was up to the appointment and I told him yes, that I just wanted to get it over. I was still so loopy from the heart attack and alll the meds and procedures. Anyway, he approved me within 1 one month(I could tell he was really aggravated at the system himself) Anyway, I do tend to make a short story long also, anyway my advice to anyone is regardless of anything else.GO FILE AT THE SOCIAL SECURITY OFFICE asap! sorry for the caps.The reason i say this is when you are finally approved it is retro. I had first filed in October of 2000 and got approved in september of 2002. But it retroed back to my very first filing that I had done on my own! matter of fact the judge was so kind that he actually retroed it back to January 2000 because thats when things started going downnhill for me and I couldnt work full time! Good luck! take care and again welcome!
Remember anyone wanting to file....just get that paperwork in and dated!
Breath!
~~~~~~****There is no class distinction for those who love, only for those that hate. ...Told to me by my Great Grandmother Grace loepke...... R.I.P. Grandma.~~~~~~~****


breathofsighs1
Regular Member


Date Joined Aug 2008
Total Posts : 74
   Posted 8/22/2008 8:50 AM (GMT -7)   
Btw...as much as I hate not being able to work , I have worked since i was 15 years old and went on disability when I was 48. I put in 33 years of work. I do not feel any guilt anymore(I did at first) about being on SSD! It's not much but I am thankful for it. I dont have what I want but thank God I do have what I need. There are alot of people worse off than me. Forget the guilt y'all. You know what your abilities and limits are.
Breath
~~~~~~****There is no class distinction for those who love, only for those that hate. ...Told to me by my Great Grandmother Grace loepke...... R.I.P. Grandma.~~~~~~~****


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17101
   Posted 8/22/2008 11:06 AM (GMT -7)   
I was able to get disability with no attorney.  My husband had died and I was on COBRA for two years.  After one year I decided that I needed to find other health insurance.  I started looking and no one would insure me with several chronic illnesses.  I was so upset and spoke with my doctor about it.  He said that people like me were the reason disability insurance was created. 
 
I interviewed with my local social security office and followed their directions to a "T".  They wanted all the health records from all of my doctors and I saw that they were provided that.  I filled out all of their forms.  Then they sent me to their choice of doctors.  That was a joke, since my doctors were far superior.  But I went anyway.  I waited a few more months and then opened my bank statement one day and there were thousands of extra dollars in it.  They never contacted me.  They just deposited the money and it was retroactive to the day my husband died!
 
I do have Crohn's disease and a major hearing impairment so I know that played into it, too.  I think they are starting to realize how hard it is to work when you have fibro.  I wish you luck!
 
Sherrine 
Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7


breathofsighs1
Regular Member


Date Joined Aug 2008
Total Posts : 74
   Posted 8/22/2008 12:57 PM (GMT -7)   
That is soooo importnt also, to have your regular treating doctor document everything for your medical records and I mean everything that is wrong with you. They even listed my stress incontinence. In the judges decision he wrote that..."The treating regular physicians opinions carry alot more weight than the doctors you are sent to by social security!" Thank goodness I had been using the same doc for years. I was so sick i could barely make a sentence when I filed much less deal with all the paperwork. I am so glad sherrine that you were succesful. It can be a nightmare and compared to most my wait really wasnt that long!
~~~~~~****There is no class distinction for those who love, only for those that hate. ...Told to me by my Great Grandmother Grace loepke...... R.I.P. Grandma.~~~~~~~****


LBL
Regular Member


Date Joined Aug 2008
Total Posts : 20
   Posted 8/22/2008 1:59 PM (GMT -7)   
Breath, thanks for your story, it wasn't long at all.  I am 45 and also have worked since 7th grade, 1978.  I know that social security is not a gov't handout...like you said it is something I worked for and have earned and is mine but the SS administration just wants to give it to me (us) later.  I honestly have no doubt that I will get it.  It might take a little persistance but I have fibro, and arthritis and I simply cannot work a full time job and then take care of my son.  I hate the idea that my child will remember his mother always saying, "I can't right now I don't feel good" or "don't, my body hurts" or when he sees me cry in bed at night because the pain is so bad and I just break down.
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