really need some support

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junerainbow
Regular Member


Date Joined Feb 2010
Total Posts : 403
   Posted 6/28/2010 1:50 PM (GMT -7)   
I am really feeling very depressed... very down. I am still in so much pain from the pancreatitis. I have an inflamed stomach which hurts. My bowels hurt. Just alot of pain and nausea. I am scared of my next steps. Heck, I don't even understand what is going on now. I thought that when I got home I would start feeling better, but I don't. Doctor said today that it would be at least another seven days of pain and nausea. The pain pill, percocet , is doing nothing for the pain. I hate it. It makes me feel awful. The nausea medicine, zofran, helps for only so long than I am wanting to get sick again. In the hospital I was given nexium, but the insurance company refused to fill that for home. So they gave me a generic prilosec which did not work. The doctor and the insurance company are fighting because the dr wants me back on nexium so for now I am on nothing which doesn't exactly help the burning and the nausea. I am back on prednisone which I hate. I have to take carafate all day long...

feel like I sleep, take meds, get dizzy, get sick and do it all over again. I am moody in a big way. I don't understand why I can't have a pain pill that works. the only thing that worked in the hospital was the morphine. The doctor wanted to leave me in the hospital but after going rounds with the dietitian and the nurses, they realized they could not accommodate the gluten free diet and I was even sicker in there, that in itself is crazy.

I have to go to the GI on Wednesday to discuss all of this and so he can give me a post hospital check up. He is so disappointed because I was feeling so good. I truly cannot believe the Imuran did this..I am so mad. I have no idea what my next step is. I want to be healthy again.. I didn't like the mayo advice of nothng for six months...I was trying to find a job.. trying to have my life back... I even had an interview on monday before I got sick. They called me in the hospital to return for a second interview and I had to tell them that I couldn't make it. She is holding the second interview until the end of the week but I have no idea what I will be like. Will I return to the 15x a day diarrhea ? I have no idea what the future holds short term... all I know is that pancreatitis sucks . I never knew it came on like this. I am frustrated and angry and mad and I don't feel like anyone is listening to me. I keep crying. I hate feeling like I am going to vomit all the time. I am so tired, I have zero energy and just having a really difficult time.

if you read this. thank you. I just don't have anyone to turn to here that gets it..
40 yo...mom to three wonderful kids, and wife to an amazing , supportive husband of 18 years..
-----------------------------------------------------------------------------------------------------------------
Diagnosed with gluten intolerance April 2009

Diagnosed with Crohn's March 2010- Mayo Confirmed May 2010
Back on Prednisone, Colestipol. propranolol, vivelle patch
No longer on Imuran due to pancreatitis
Have taken Entocort, Bentyl, Flagyl, Lomidil, Pentasa
Have had myriad of health problems attributed to many different things over the past ten years. Our family has a history of Crohn's, Ulcerative Colitis and Bowel Cancer.


staci100
Regular Member


Date Joined Mar 2006
Total Posts : 111
   Posted 6/28/2010 2:06 PM (GMT -7)   
I honestly feel for you!! I certainly do get the depressed, down feeling, frustration, anger, feel like no one listens, and on and on. I didn't know that Immuran could do something like that. I was on it for 4 years. I don't know if you have ever been to an acupuncturist but I have and they can treat pain, nausea among other things. If there are any in your area I would certainly give it a try!!!! I really enjoyed going and I do have an appt this thursday with an acupuncturist. I realize it is outside the box but I believe with what we have we sometimes have think outside the box and figure some things out for ourselves. Best of Luck to you and as hard as it is try to think positive....I am trying myself and I know it isn't easy.
34>
Diagnosed with CD 1993



Currently taking Asacol, B-12, Folic Acid, Probiotic


Irishmom4
Regular Member


Date Joined Sep 2008
Total Posts : 457
   Posted 6/28/2010 2:20 PM (GMT -7)   
I am so sorry that you are experiencing such difficulties. I hope the doc can give you some new pain meds to get you through this. There has to be something they can do to give you a better quality of life for the next 7 days. It sounds absoulutely miserable.

Please know that you are in my thoughts and prayers.
Elizabeth
Dx'd with Crohns 1984
Polycystic kidney disease in 1996
Bowel Resection surgery 2006, Now on Asacol,  Imuran, Folic acid, and Enalapril.
 


Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 6/28/2010 2:35 PM (GMT -7)   
First off let me just say, it sucks sometimes and we get it.

Now, you need to muster up the energy to make your doctor give you something different for the nausea and the pain. If you can't get up the energy then please ask your husband to do it for you. There are other medicines out there for both and if what you have isn't cutting it, then you have the right to demand better. No one should have to suffer. You might try Phenergan (sp), Compazine or Tigan for the nausea, and there are many other pain meds. If your GI won't give you something else for the pain, then ask for a referral to a pain clinic. Which isn't a bad idea anyway because long term you might want to be established with one for the next time something goes a miss. GI's are notorious for not RX'ing pain meds, but you have a short term problem and you need some strong pain med for it. Your doctor should be made to see that a limited supply of something strong will get you through the next few days until you are feeling better.

Also, sometimes I can be feeling my worst and in a few days I can wake up and feel so much better. The body has an amazing ability to heal. So don't count yourself out just yet. You may wake up on Thursday or Friday and feel much better. Don't worry about 4 days from now, just get through today.

(((((HUGS)))))
Suzanne

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


grumpygi
Regular Member


Date Joined May 2010
Total Posts : 266
   Posted 6/28/2010 2:56 PM (GMT -7)   
junerainbow:  I am soooo very sorry you are so ill and not on the mend.  If it is too unbearable without adeqate relief you can always go back to the ER.  Even though this thought is probably revolting to you there is relief in that they can keep you hydrated and avoid your gi tract a little bit longer.  The pain meds are better too, and they might also send you home with something a bit stronger or more effective to help you through this process.  Keep us posted, I pray you feel better soon.  Take care of yourself.  barb

newby


junerainbow
Regular Member


Date Joined Feb 2010
Total Posts : 403
   Posted 6/28/2010 3:02 PM (GMT -7)   
husband did try today...they tried to tell him that there is nothing else...percocet is it. If they give me something stronger it will mess with my stomach and crohn's. I just can't believe that. as for the nausea, they called in diazepam to relax my reflux muscle? and try and keep the nausea down.

day by day... okay...

thanks for the support -- hubby just got home and said pharmacist said pancreatitis, crohns and my stomach inflammation are very difficult to treat??
40 yo...mom to three wonderful kids, and wife to an amazing , supportive husband of 18 years..
-----------------------------------------------------------------------------------------------------------------
Diagnosed with gluten intolerance April 2009

Diagnosed with Crohn's March 2010- Mayo Confirmed May 2010
Back on Prednisone, Colestipol. propranolol, vivelle patch
No longer on Imuran due to pancreatitis
Have taken Entocort, Bentyl, Flagyl, Lomidil, Pentasa
Have had myriad of health problems attributed to many different things over the past ten years. Our family has a history of Crohn's, Ulcerative Colitis and Bowel Cancer.


riesasmom
Regular Member


Date Joined Dec 2009
Total Posts : 44
   Posted 6/28/2010 3:14 PM (GMT -7)   
Hey there,
Sorry to hear of all you have been through. It all seems so unfair. Why some have to suffer so much. I am curious as to why you say the Imuran caused all this. My 14 yr old daughter may have to go on Imuran soon and I am so scared about it. Just got her blood work back and it seems her inflamation levels are getting up there. She just finished a crohns flare and a dose of Pred a month or so ago. I don't know what to do anymore. Tried SCD, which she cheats on, and LDN seems to have stopped working. Pentasa is not working. I'm at the end of my rope too. I feel hopeless and so tired of it all. Hope you start feeling better soon. Diana

junerainbow
Regular Member


Date Joined Feb 2010
Total Posts : 403
   Posted 6/28/2010 3:25 PM (GMT -7)   
The hospital, the gi dr and my internal dr all agreed on the imuran. The GI dr just told me today that he had a gentleman recently who did the same thing on Imuran. I just had a blood test and all numbers looked good and than I was in the er. This person did the same thing. His numbers looked good and he was in the er a few days later. I googled it and did find other cases, in fact, I think some on here have had the pancreatitis. I don't know why it is... I actually never heard of this before my er visit. But I don't drink and I don't have gallstones so it was ruled Imuran. I had been on it for three weeks at 125mg.

I am sorry about your daughter.. nothing about this is fun.. sending you good thoughts as well...
40 yo...mom to three wonderful kids, and wife to an amazing , supportive husband of 18 years..
-----------------------------------------------------------------------------------------------------------------
Diagnosed with gluten intolerance April 2009

Diagnosed with Crohn's March 2010- Mayo Confirmed May 2010
Back on Prednisone, Colestipol. propranolol, vivelle patch
No longer on Imuran due to pancreatitis
Have taken Entocort, Bentyl, Flagyl, Lomidil, Pentasa
Have had myriad of health problems attributed to many different things over the past ten years. Our family has a history of Crohn's, Ulcerative Colitis and Bowel Cancer.


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 6/28/2010 4:22 PM (GMT -7)   
Hi June,

A quick note to let you know how sorry I am that things are still this hard for you. Like Zanne said, many of us have been there too, and can relate to how you're feeling, and are sending you lots of supportive and strengthening thoughts as you are at this low point. It's horrible feeling like this, I know, and I hope that things will improve for you soon.

I'm outraged that your hospital couldn't / wouldn't accommodate your diet. It seems to me that this is an access and equity issue and that you have a RIGHT to food that won't make you sick, and that you would be well within your rights to complain about it, when you're feeling stronger. You shouldn't have to leave hospital just so you can eat, and not get sicker :-(.

Ivy.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 6/28/2010 4:27 PM (GMT -7)   
Well said Ivy! That's what I mean about the pain meds and the nausea meds too. If you could be in the hospital you most certainly would have better medication available.
Suzanne

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


junerainbow
Regular Member


Date Joined Feb 2010
Total Posts : 403
   Posted 6/28/2010 4:36 PM (GMT -7)   
i am planning on complaining.. I thought when i demanded to see the dietitian.. but she was coarse and abrasive and disagreed with my doctor about my need for gluten free. she looked at me and said there is no way i am not coming in contact with gluten. I told my dr who than decided i would be safer at home. I am tired.. and disgusted.. about all of it. but yes.. i am within my rights and i plan on pursuing this when i am stronger.
40 yo...mom to three wonderful kids, and wife to an amazing , supportive husband of 18 years..
-----------------------------------------------------------------------------------------------------------------
Diagnosed with gluten intolerance April 2009

Diagnosed with Crohn's March 2010- Mayo Confirmed May 2010
Back on Prednisone, Colestipol. propranolol, vivelle patch
No longer on Imuran due to pancreatitis
Have taken Entocort, Bentyl, Flagyl, Lomidil, Pentasa
Have had myriad of health problems attributed to many different things over the past ten years. Our family has a history of Crohn's, Ulcerative Colitis and Bowel Cancer.


grumpygi
Regular Member


Date Joined May 2010
Total Posts : 266
   Posted 6/28/2010 4:37 PM (GMT -7)   

junerainbow:  was just re-reading your post - hopefully the valium will kick in and calm everything down.  It might be helpful to stay on top of the pain as one method to make yourself more sane and take the pain meds every 3ish hours (oral drugs take 30 minutes to kick in - if you are prescribed them every 3-4 hours would do 2 1/2 hours and then try and stretch it out to 4 hours after a couple of days).  Plan on doing nothing, eathing only broth, water or juice to keep yourself hydrated and see if this helps.  Huge pain levels can also keep your system stressed enough you don't get better as quick.  I agree with Ivy that your hospital should be able to feed even those on limited or restricted diets. 

Just to make you laugh (laughter being the best medicine) next time your hospitalized claim some weird religion (you pick!!), weird food fetish or some other attention seeking behavior that forces compliance with your demands.  I don't believe in revenge but will leverage the playing field to my advantage!

Take care -your husband and family sound delightful and supportive, so just take care of you now!  The house can sink to new lows, the kids get to eat junk and the husband watch never ending sports all while you recover (and I will get to brag about my skinny new friend). 


newby


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 6/28/2010 5:17 PM (GMT -7)   
Wot, the dietitian overruled the doctor? :-0

That's terrible!
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


tewcute
Regular Member


Date Joined Mar 2010
Total Posts : 300
   Posted 6/28/2010 6:24 PM (GMT -7)   
I am so sorry you are going through this. I don't have any advice as I have not been on this drug but you will be in my thoughts and prayers tonight. I hope you feel better soon. It is beyond ridiculous to me that the hospital, the place you are supposed to get well can't accomodate you.
Dx with crohns February 25, 2010. But suspect I had it since 2002 with very mild symptoms.
4 lialda a day.
3 entocort daily for the next few months
hyosamine for daytime
Bentyl for evening
Multigen


pam222
Veteran Member


Date Joined Jun 2009
Total Posts : 985
   Posted 6/28/2010 6:50 PM (GMT -7)   
that is terrible that the hospital doesn't do gluten free. So, what, people with Celiac can't stay there? That makes no sense! My hospital has a gluten free menu
27/F Diagnosed with unspecified UC 11/08 (symptoms for over a year before)
Asacol, Prednisone, Remicade with no success--no remission for over 2 years
8/09 colonoscopy shows that the whole colon is affected
12/18/09 Removal of colon, creation of J-Pouch and ostomy; recessed stoma; 12/30/09 Takedown too soon; RV fistula;1/9/10 Second Ileostomy Surgery;
1/25/10 Stoma Revision Surgery; 3/30/10 Takedown again; 6/9/10 Scope and Biopsy--Diagnosed with Crohns Disease (maybe...)
Tried gluten free and dairy free with no noticeable improvement; Was on TPN and IV fluids 2/10-6/10. Currently:Prednisone 40 mg, Culturelle, D, B12, Iron, Prenatal vitamin, Lomotil, Lortab, Humira


leysa
Regular Member


Date Joined Oct 2009
Total Posts : 111
   Posted 6/28/2010 7:25 PM (GMT -7)   
June, I have no advice, but I just wanted to offer sympathy and hugs. I'm so sorry you're still feeling so badly. :( *hugs*
30/f
chronic active colitis/unspecified IBD - still awaiting a PillCam
Lialda 1.2 mg 2x/day
Prednisone 20 mg taper in progress
Remicade - 1 infusion so far
Darvocet or Lortab as needed for pain


junerainbow
Regular Member


Date Joined Feb 2010
Total Posts : 403
   Posted 6/28/2010 8:36 PM (GMT -7)   
they had a gluten free menu but told me that everything in their kitchen touches gluten and there was no way they could promise I was eating gluten free...and she didn't even know what was and what wasn't. in fact, she brought me a pudding, and than tried to take it away. thankfully i had my laptop and googled it.. it was gluten free.. i took it back. When I was on the liquid diet alone, she said they had nothing that was gluten free which I thought was weird. She brought me cream of wheat.. I looked at her.. and said .. ummmm cream of wheat?? she said yeah.. you said you couldn't have gluten. I looked at her and said cream of .......WHEAT. I really was stunned. Gluten intolerance/celiac is not uncommon.

uggg. definitely complaining.

thanks for all the support.. you guys made me laugh and get through this.. it will get better..just day by day...hugs to all of you.
40 yo...mom to three wonderful kids, and wife to an amazing , supportive husband of 18 years..
-----------------------------------------------------------------------------------------------------------------
Diagnosed with gluten intolerance April 2009

Diagnosed with Crohn's March 2010- Mayo Confirmed May 2010
Back on Prednisone, Colestipol. propranolol, vivelle patch
No longer on Imuran due to pancreatitis
Have taken Entocort, Bentyl, Flagyl, Lomidil, Pentasa
Have had myriad of health problems attributed to many different things over the past ten years. Our family has a history of Crohn's, Ulcerative Colitis and Bowel Cancer.


pam222
Veteran Member


Date Joined Jun 2009
Total Posts : 985
   Posted 6/28/2010 8:46 PM (GMT -7)   
jeeze. you'd think they would be more careful about not letting things touch and stuff. it could be a real serious problem for many patients. can't believe that person is a dietician...
27/F Diagnosed with unspecified UC 11/08 (symptoms for over a year before)
Asacol, Prednisone, Remicade with no success--no remission for over 2 years
8/09 colonoscopy shows that the whole colon is affected
12/18/09 Removal of colon, creation of J-Pouch and ostomy; recessed stoma; 12/30/09 Takedown too soon; RV fistula;1/9/10 Second Ileostomy Surgery;
1/25/10 Stoma Revision Surgery; 3/30/10 Takedown again; 6/9/10 Scope and Biopsy--Diagnosed with Crohns Disease (maybe...)
Tried gluten free and dairy free with no noticeable improvement; Was on TPN and IV fluids 2/10-6/10. Currently:Prednisone 40 mg, Culturelle, D, B12, Iron, Prenatal vitamin, Lomotil, Lortab, Humira


pam222
Veteran Member


Date Joined Jun 2009
Total Posts : 985
   Posted 6/28/2010 8:49 PM (GMT -7)   
Oh, and none of the anti nausea pills ever worked for me :(. I tried Compazine, Reglan, Phenergen, Zofran...Zofran through IV worked for me at the hospital, though.

My GI would never give pain meds. My surgeon is the one who will prescribe them to me now because it helps slow things down and I was having so much rectal pain and pressure
27/F Diagnosed with unspecified UC 11/08 (symptoms for over a year before)
Asacol, Prednisone, Remicade with no success--no remission for over 2 years
8/09 colonoscopy shows that the whole colon is affected
12/18/09 Removal of colon, creation of J-Pouch and ostomy; recessed stoma; 12/30/09 Takedown too soon; RV fistula;1/9/10 Second Ileostomy Surgery;
1/25/10 Stoma Revision Surgery; 3/30/10 Takedown again; 6/9/10 Scope and Biopsy--Diagnosed with Crohns Disease (maybe...)
Tried gluten free and dairy free with no noticeable improvement; Was on TPN and IV fluids 2/10-6/10. Currently:Prednisone 40 mg, Culturelle, D, B12, Iron, Prenatal vitamin, Lomotil, Lortab, Humira


champagnekindofgal
Regular Member


Date Joined Jan 2010
Total Posts : 221
   Posted 6/28/2010 10:39 PM (GMT -7)   
Reglan worked for me when nothing else worked for me ... and remember the ER might have short term options for pain relief .. and if one ER room doesn't work - go to the next or the next city! Or a pain clinic or look at anti-depressents which can help for long term solutions. I'm on Imuran so I'm googling your symptoms for sure!

Keep up on your fluids! Pedialyte! Keep reaching out .. .you are loved and supported here ... and this disease really is the craps! And it is very confusing when you are in the middle of it as everyone is so different ..
44-single mom diagnosed with Crohn's 2004 via pill camera    6MP kicked into remission (along with modified diet) so went off in 2006.
 
2009/2010 acute flare and hospitalization - now on Imuran. Currently taking 55 mg prednisone.
Current problem - protruding thrombosed hemorrhoids (external as well as internal).
 
Fibromyaglia; migraines; herniated disks C5,6 and arthritis in neck; asthma; scolisis in back/arthritis.
 
 
 


Grandpato2
Veteran Member


Date Joined Dec 2009
Total Posts : 681
   Posted 6/28/2010 11:28 PM (GMT -7)   
I also haven't anything new to offer that hasn't been expressed by others but just want to offer my support in prayer if thats ok Rob
Male, 55 years old with Crohn's since 15 years old, diagnosed at age 46. Terminal ileum resected 2002. 5 months of remission. Crohn's has now been active since May, 2003. Had a gall bladder removed Nov. of 2009. Currently on Remicade every 8 weeks, Nexium, Iron, B-12 injection every 4 weeks, Morphine Sulfate as needed for pain. Cymbalta for long term pain control. In the past, 5-asa Salofalk, Asacol, Entocort,  Imuran and Prednisone.


junerainbow
Regular Member


Date Joined Feb 2010
Total Posts : 403
   Posted 6/29/2010 7:23 AM (GMT -7)   
the valium helped me sleep some last night..so I am thankful for that. the support and prayers.. thank you ..it means so much to me. going to try and be optimistic today. well try. I am drinking fluids, taking my meds and resting. Dr thinks it will be another week of pain and than I should be finding some relief.

I will let you know what the GI says tomorrow.

you guys are the best.
40 yo...mom to three wonderful kids, and wife to an amazing , supportive husband of 18 years..
-----------------------------------------------------------------------------------------------------------------
Diagnosed with gluten intolerance April 2009

Diagnosed with Crohn's March 2010- Mayo Confirmed May 2010
Back on Prednisone, Colestipol. propranolol, vivelle patch
No longer on Imuran due to pancreatitis
Have taken Entocort, Bentyl, Flagyl, Lomidil, Pentasa
Have had myriad of health problems attributed to many different things over the past ten years. Our family has a history of Crohn's, Ulcerative Colitis and Bowel Cancer.


kazbern
Veteran Member


Date Joined May 2010
Total Posts : 8375
   Posted 6/29/2010 8:43 AM (GMT -7)   
Gosh, June, I'm sorry this has been so FUBAR.  I only have one thing to add - about the ppi.  I was taking Nexium and then grew tired of the cost and the fact that I still had heartburn almost daily.  So I stopped cold turkey.  Wow, that was stupid.  I started taking OTC prevacid, and while it took about a week to get full relief, it has worked well and even better than the Nexium, at less cost (even with my insurance, I was paying about $2/pill of Nexium; the prevacid I bought at Kroger on Sunday cost $21 for a box of 48).  There are a bunch of ppi meds on the grocery shelf these days - if prilosec didn't work, try another.  But remember that it may take a few days (maybe the reflux med you're taking now will help in the short term) to reduce acid production.
 
There are other pain meds available for home use.  Maybe your medical team is worried about opiate dependency?  I agree with other posters that you need someone to advocate for you - can you self-refer to a pain management specialist?
 
That "dietician" needs to be fired.  Seriously.  When you feel better I suggest a nasty letter to the hospital administration and the state accreditation authority.
 
{{{{HUGS}}}}}


cleo35
Regular Member


Date Joined Feb 2007
Total Posts : 430
   Posted 6/29/2010 12:51 PM (GMT -7)   
June, you've received lots of good advice but I just wanted to put my two cents in. 1) when you're feeling better starting looking for another GI - percocet is NOT the only pain med you can take with crohns - WTH????

riesasmom: I know you're frustrated but pentasa and imuran aren't the gold standard of crohns treatment by any means. There are a lot of drugs out there: 6mp, remicade, humira, cimzia to name 4. It's time to pull the plug on the diet thing - especially is she's not adhering to it. Give these other drugs a chance to help her get her life back. I understand that you're not crazy about having your 14 yr. old daughter on these heavy drugs but how do you feel about the way her life and yours are going at this point? She wants her life back; you want her to have her life back but apparently on YOUR terms which means a change in diet. She already telling you by her actions that she doesn't believe a change in diet is the answer. How much longer are you going to let her go on like this?
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