Really need some support

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bluejet2
Regular Member


Date Joined Feb 2009
Total Posts : 487
   Posted 3/10/2010 1:17 PM (GMT -7)   
Hi Everyone:

First I want to apologize for not being around all that much, I have really been having a rough time of it for several months now, and although I know that that is exactly when I should be posting, I just feel like I am such a negative state of mind, I didn't want to be a "debbie downer".

Some of you may remember that I was having a very difficult time because I had been on the same dosage of pain medications both orally and through my intrathecal pump for over 3 years and my pain management doctor was unwilling to make any changes because he said I was "maxed" out. I was also very frustrated because my intrathecal pump has the capability of being programmed to where I could give myself bolus's as needed throughout the day (the amount of the bolus would of course be determined by my PM), but he would not even consider it. I even begged for him to just switch to a comparable medication as there is a school of thought that a different medication goes to different pain receptors in the brain, and your tolerance is lessened thereby making the medication more effective. He refused to do that also.

Despite this, he had been my PM for over 14 years and we had a wonderful rapport, so I was very reluctant to change doctors. With the encouragement of a very dear friend, I finally realized that I had to find someone that was willing to try something new as my quality of life was next to nothing.

I did not realize how hard it was going to be to find someone really knowledgeable about intrathecal pumps who was willing to take on a patient that had a pump already implanted from another doctor. It took several months. In the meantime I was hospitalized twice in January for over a week each time because my pain level was out of control.

I finally found a new doctor, and I am hopeful that he is what I've been looking for. I had Dilaudid and Bupbivicaine in my pump, and he changed the Dilaudid to Sufentanil, and added Clonodine. They made the switch last Thursday, and since Friday I have been going through terrible withdrawals, and so far there is no change in my pain level. They bumped the dosage up a little bit yesterday, but I still feel awful.

Thanks for allowing me to get this all out. I guess I just need some words of encouragement.

Lorie

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 3/10/2010 1:31 PM (GMT -7)   
Lorie,
All I know about pumps I've learned from reading on this site, so I'm no expert there, but I do know from reading Straydog's post about how much her new doctor helped her that it was worth the switch (although I think her situation was different from yours - can't recall all the details).

Anyway, I just want to offer you some support and hugs and tell you not to worry about being "debbie downer" here! That's WHY we're here. So please vent, cry or whatever you need to do as you go through this.

It just seems to me your doctor ought to be able to give you something to help with the withdrawals, but I don't know enough about the pumps to say anything specific. Hopefully, someone else will be along with some suggestions - but it probably can't hurt to call your doctor and ask for some help with the withdrawal, IMHO.

(((((((((((Lorie))))))))))

PaLady

Stella Marie
Veteran Member


Date Joined May 2005
Total Posts : 601
   Posted 3/10/2010 1:34 PM (GMT -7)   
Dear Bluejet2,
 
I am so sorry to hear what you are going through.  As a person who also has an intrathecal pump and has had to switch doctors too, I know excatly what you are going through.  No one should ever have to tolerate the pain and loss of control over your life.  We are so dependant on our Pain Management doctors to do right by use.  When they fail to do so, we suffer, they don't.  You poor thing.  I have never going thru withdrawal due to a change in pump medication.  I am really curious about this.  There was no way the could bridge and fill with half of the old mixture and than some of the new.  Or better yet, change the pump med and give you oral to avoid withdrawal.  I hope things get better for you.  The new doctor show like a good move.  Maybe he can titate up a little sooner.
 
Please keep us posted.


Stella Marie   Chronic Pain Forum Moderator

Progressive neurodegenerative disease called Multiple System Atrophy, muscle spasms, muscle pain, neuropathy, & neuropathic pain, central sleep apnea, osteoarthritis, and 2 pain implants – intrathecal pain medication pump and an SCS (spinal cord stimulator).  Extra fun little toys and gadgets; O2 generator and assorted wheelchairs, walkers, canes, and orthotic braces.  Med - too many too list or even care about!

 

 


Post Edited (Stella Marie) : 3/11/2010 11:24:05 AM (GMT-7)


Scarred_for_life
Veteran Member


Date Joined Jul 2008
Total Posts : 1559
   Posted 3/10/2010 1:37 PM (GMT -7)   
Just wanted to send out hugssssss Lori and prayers for a better day my friend.

Hugsssssssss

Scarred
I live to "Tame My Pain!" 


skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 3/10/2010 1:56 PM (GMT -7)   
I don't know too much about pumps, so I'm not sure that I can be of much help, but I just wanted to let you know that I'm thinking of you. (((((((((((((Lorie))))))))))))).

Has your doc prescribed you anything to counteract the withdrawls?

I hope this passes fast & you are feeling better soon!

hugs,
Skeye

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9622
   Posted 3/11/2010 2:55 PM (GMT -7)   
Wish I could help you out here, but please know that I care and sure hope this new doctor can help you.
Sure hope you can get a low pain day soon...Prayers and soft healing hugz coming your ways..
(((((((((((((((((((((((((Lorie))))))))))))))))))))))))))))))))))))))))))))))))))))
hugz
**********************************************
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc (Lower Lumbar S1-L3 and Cervical C5,C6, C8 and T1), Fibromyalgia, Gerd,
Enlarged Pituitary Gland, Sjogren's, Ocular Migraines, mild carpel tunnel, ect.... "Would be nice if we could use the edit button in real life"...

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


Stac/Catz4
Regular Member


Date Joined Feb 2010
Total Posts : 358
   Posted 3/11/2010 3:22 PM (GMT -7)   
Oh Lorie, bless your heart. It is such a lonely place to be when you are enveloped in your pain. I don't have a pump and don't know anything about them, but I am really holding you up in my heart. Please vent, cry or anything you need to do to help you get through this. Keep us updated please!
Catz4
I'm called Cat, but as there are few other Cat's on here, I put the number of cats I have and combined it to spell out Catz4
DXed-Syringomyelia C-1 to T-1, Hypothyroidism, Diabetes Type II, IBS, Panic Disorder, ICC , Fibromyalgia, Migraines, Bipolar Disorder, Chronic Muscle Spasms, Torn Rotator Cuff in Left Shoulder, Had emergency surgery for ruptured bowel in '05 w/colostomy and takedown in '06.
Too many meds to name/Too many allergic reactions/sensitivities to too many drugs to name. Meds for Panic Disorder, Pain, Bipolar, IBS, Hypothroidism, Diabetes, Insomnia and then some.
 
 


White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3611
   Posted 3/11/2010 4:25 PM (GMT -7)   
bluejet

You know that we are all here to listen and support you! You know Lorie I looked up that medication, Sufentanil, that is some pretty potent stuff, it was first use in Anesthetics and Analgesic as an epidural use in labor and delivery, I do hope that this works better for you than the Dilaudid I am a little confused about your problem with withdrawal, unless your Doctor did not think switching you over to Sufentanil would cause you to go into withdrawal. I hope you have been in contact with your doctor about this! You know Lorie we are all concerned about you so please don't hesitate to come here and share your problems with your family here! We all really do care and want nothing more than to listen to you and give our support!

I wish you well Lorie


White Beard

hydrangea
Regular Member


Date Joined Mar 2007
Total Posts : 190
   Posted 3/11/2010 4:32 PM (GMT -7)   

I do not know anything about pain pumps or the medication used in them. Just wanted to wish you well. I know that this forum is the place to visit when you are feeling bad for words of encouragement. Please know that everyone here really cares about everyone on this forum. It truly is amazing that total strangers can be so kind to one another.

I hope your new doctor is able to ease your pain soon!!!

Hydrangea


Diagnosed crohns Disease 07, Bladder tumor and inflammation, Herniated disc, spinal stenosis, facet arthritis, degenerative disc disease, siatica, Three laparoscopis, hysterectomy, physical therapy, trigger point injections, spinal epidurals, Meds lyrica, vicodine, amrix.


bluejet2
Regular Member


Date Joined Feb 2009
Total Posts : 487
   Posted 3/11/2010 4:33 PM (GMT -7)   
Hi PaLady, Skeye, Scarred, Catz4, Chartreux & Stella Marie:

Thank you all so much for your kind words, encouragement, and prayers. I can't begin to tell you how much I needed them yesterday and I really appreciate it. I am feeling a little better today as far as the withdrawals, I feel very weak and worn out though. It's hard to get a read on whether the new meds are doing much yet because I have been so sick.

My husband surprised me with tickets to a Carrie Underwood Concert (Country Music Artist) tomorrow night, it's a 2 hour drive, so we are going to go up early and getting a hotel room so I can rest for a little bit before, and we'll come home Saturday morning. It's been so long since we've even just gone out to dinner just the two of us, that I really want to enjoy this &, so please say some prayers for me.

Thanks again,

Lorie

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 3/11/2010 4:47 PM (GMT -7)   
Lorie,
I hope you have a wonderful time at the concert! What a nice surprise from your husband!

I still wonder about the withdrawals, though, and why your doctor didn't help you more with that. Have you tried calling your doc about this? Please be sure you have whatever meds you need before you get on the road, as it's so hard to get needs met over the weekend when you're out of town.

Have fun - with plenty of rest breaks!

PaLady

bluejet2
Regular Member


Date Joined Feb 2009
Total Posts : 487
   Posted 3/11/2010 4:49 PM (GMT -7)   
Hi Whitebeard:

I am kind of nervous about the potency of this medication, I researched it also, and I am confused on whether it is truly a pain medication or if it is just a numbing agent. I have read what you did that it was used as a general anesthesic, and for epidurals for women in labor, and I did read in a place or two that it was 100's of times stronger than Dilaudid and Fentanyl. My dosage of Dilaudid was 18 mg per day, where my dosage of Sufentanil is 9 mcg.

I called the doctor on Monday, and his nurse said he was not surprised that I was going through withdrawals, and they bumped my dosage from 7.5 - 9mcg.

Thank you for always being there for me! I will try to do better with posting.

Hi Hydrangea:

Thank you for your kind words as well. It is amazing how much we all care for each other.

Lorie

Retired Mom
Veteran Member


Date Joined Feb 2010
Total Posts : 1753
   Posted 3/11/2010 5:56 PM (GMT -7)   
You are really on my mind tonight. I hope you are doing well!

Rest well this evening!
DDD, CPS, TLIF L5-S1 2009 (failed), FIBRO, MINEYER'S (SP?), MIGRAINES, GERD, NISSEN FUNDOPLICATION (failed), GAD, DEPRESSION, EXTREME ANXIETY DISORDER, OCD, PSTD, CHRONIC MUSCLE SPASMS, HUMAN GROWTH HORMONE DEFICIENCY, VITAMIN D DEFICIENCY and much, much more...


skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 3/11/2010 6:28 PM (GMT -7)   
Lorie,

Enjoy the concert! I like Carrie Underwood too! Hope you are feeling better tonight.

hugs,
Skeye

nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 3/11/2010 9:12 PM (GMT -7)   
Dear Lorie....I'm so sorry you're going through all of this. It sounds absolutely horrendous! I don't know anything about pumps either but I'm praying that your doctor(s) will have wisdom and guidance about the medications they administer to you, and that you will find some relief!

I also pray you will be able to enjoy your "date night" and the concert! What a wonderful surprise!

((((((hugs))))))
JoAnn
Lyme Disease, AIH, Hashimoto's, lupus, fibro, RA, celiac disease, asthma, psoriasis, Raynaud's, hypertension, osteopenia, sleep apnea, RLS, GERD, DDD, L4 and L5 radiculopathy -> severe lower back pain, cubital tunnel, tarsal tunnel, Doxycycline, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP

autoimmunediseasesgfliving.blogspot.com


JKay
New Member


Date Joined Jan 2010
Total Posts : 19
   Posted 3/11/2010 9:41 PM (GMT -7)   
Hang in there!
Left pelvic CRP due to botched hysterectomy. Right kidney removed due to cancer.


White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3611
   Posted 3/11/2010 10:31 PM (GMT -7)   
Lorie

Raising your Sufentanil level should certainly help you! You know this might be just the thing you need to get your pain under control, so try to be cautiously optimistic about it I am keeping my fingers crossed for you, and keeping you in my prayers too! I hope you have a Great time with your husband at the concert!

Have Fun!

White Beard

bluejet2
Regular Member


Date Joined Feb 2009
Total Posts : 487
   Posted 3/12/2010 12:40 AM (GMT -7)   
Hi Whitebeard, RetiredMom, JKay, Skeye, PaLady, & Nasalady:

I so appreciate you thinking and worrying about me, and your well wishes for my trip to the concert tomorrow. I am so looking forward to this time with my husband. He is a such a wonderful man, who takes such good care of me. I often feel so guilty that I have put him and my children through so much in the last 16 years since my accident. He has literally slept on hospital floors while I was recovering from surgeries, he has been there for me every step of the way, and I don't think I tell him often enough how much he means to me.

Thanks again to all of you.

Lorie

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9622
   Posted 3/12/2010 10:23 AM (GMT -7)   
I sure hope you can enjoy that concert and relax a little...
Lots of soft healing hugz coming your way....
((((((((((((((((((((((((((Lorie)))))))))))))))))))))))))))))))))))))))))))))))))))
**********************************************
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc (Lower Lumbar S1-L3 and Cervical C5,C6, C8 and T1), Fibromyalgia, Gerd,
Enlarged Pituitary Gland, Sjogren's, Ocular Migraines, mild carpel tunnel, ect.... "Would be nice if we could use the edit button in real life"...

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


mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1228
   Posted 3/12/2010 8:49 PM (GMT -7)   
Lorie!
I wondered where you had disappeared to, and am relieved to see you again. Did you ever call my pm? He was more than willing to see you, so I hope that this new doctor that you are talking about is him.......or at least that you found someone as compassionate as he is.
I hope that things will drastically improve for you now with this new doctor. I know that any transition is difficult from one med to another and I think it is more difficult because they have to remove the old combination of medications from the pump in order to make sure that there is nothing left in the catheters with the pumps, before adding the new dosages or combinations of medications. I also know that because there are so few choices of meds that can be used with the pump that they have to be extra careful of combining different meds because they can cause problems with other meds in the pumps. Hang in there girl, I'm sure that they will get this straightened out as soon as they can for you.
In the meantime , they can offer you some pill form meds to help make the transition a bit easier.
Hope to hear from you soon,
Sandi
PLIF/TLIF Fusion w/Instrumentation L4-5 Spondololysthesis L4-5.Laminectomies L4-5, foraminal stenosis L3-4, L4-5, L5-S1, herniations L3-4, L4-5, L5-S1, central canal stenosis L3-4, L4-5 and L5-S1
POST OP CES 3/30-06
Neurogenic Bladder and Bowel, bilateral numbness legs and feet
Revision for failed Back surgery, pseudoarthrosis L4-5, hemilaminectomies L3-4, L4-5, L5-S1, bmp added to revision fusion, replaced two bent screws that were reversing out of vertebrae - August 2, 2007
On going back pain and neuropathic pain, failed back surgery, consult for scs, decided not to do that at this point.
Adhesive Arachnoiditis also......just what I didn't need..9/08- adding bilateral ulnar neuropathy with severe compression to the mix. They want me to see a surgeon for ulnar nerve surgery, but I'm not biting.
I've seen enough surgeons over the last few years.
Avascular necrosis of left wrist- maybe hips too


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13470
   Posted 3/13/2010 3:35 AM (GMT -7)   
Hey Sandi, no they didn't drain the pump or the catheter on Lorie, thank God or she would have been in a worse mess. I am thinking her pump nurse said the new med would be going thru her pump after 8-10 hours of being filled with the new meds. I know originally I was given Morphine in my pump by mistake when it was first implanted and it took 24 hours for the Morphine to clear the catheter before the Dilaudid combo hit the catheter. Some drs do drain the pumps when changing out meds but both of us were lucky enough not to have to deal with that on top of everything else.
 

crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & psoriasis and psoratic arthritis. Several other health issues just not enough room to list it all. Too many surgeries to list and too many medications to list. Currently on 17 different daily medications. Intrathecal pain pump implanted June 05.


bluejet2
Regular Member


Date Joined Feb 2009
Total Posts : 487
   Posted 3/13/2010 10:41 PM (GMT -7)   
Hi Sandi:

I am so sorry I dropped off the face of the earth like that, I have really been in a bad way for several months. I was hospitalized for 9 days, home for 4, and went back in for another week in January. While there, I was looking over all the information and recommendations people had given me regarding PM's and found that I had 4 recommendations for the same doctor in Hackensack, NJ. I had already tried a few times to make an appt. with him, but they wanted all of my medical records first which I was trying to get, but the hospital that my other PM worked out of wanted $1.00 a page, and it was 100's of pages. Things were at a stand still and I was getting worse.

While I was in the hospital, I was having a problem with one of the doctors, and my husband got the patient advocate involved. While we were talking she asked what my long-term plan was, since being in the hospital every other week was not an option (like I would want it to be), and I told her where I was at. She asked me to give me his name and number and said that she was known to perform miracles because she doesn't take no for an answer. She came back 20 minutes later and said "you have an appt. tomorrow at 1:30". I couldn't believe it.

I've only met him once so far, but he came across as a doctor who genuinely wants to help me. Almost all of his patients have intrathecal pumps and he is a big advocate of the PTM which is a device which I would be able to give myself bolus's with throughout the day as I felt necessary, (Of course he would determine the dosage and the number of times a day).

I will e-mail you in the next week or so and let you know how things are going.

How are you doing? I'd love to hear from you and find out how you've been doing as well.

Hi everybody:

Carrie Underwood was fantastic. The only thing that was frustrating is that my husband paid extra and bought seats on the floor level in what was supposed to be seating for handicapped people, but most of the people were fully able-bodied and every time she sang they would all stand up and start dancing - I can't stand that much and I wound up having to watch a lot of it on a big screen monitor and I felt like I could have done that at home, but the time spent with my husband was so worth it!

I am still having some withdrawals symptoms. They are about 50% better. I feel like maybe the change in meds might be helping a little bit at some points in the day, but then at other times, I feel like it is still the same. I am going to call the doctor on Monday to tell them how I am feeling, and I'm hoping that if they adjust the dosage a little more, maybe it will do the trick.

Thanks again for all your support and well-wishes!

Lorie

uniquelyme
Veteran Member


Date Joined Nov 2008
Total Posts : 1037
   Posted 3/14/2010 11:05 AM (GMT -7)   
What really upsets me about this post is that the PM Dr.'s push this treatment on us....claiming that they will take care of us...that they will try to keep our pain levels down with meds.... But when the time comes for a change in meds they Run Run Run....Why?  Is it that they think they know everything and can't stand for US to say any different?  If a pain med isn't working...whether it be orally or in Pain Pump, then try something that will...it doesn't mean that they are a bad Dr. just that the meds don't work for us....so swallow your pride....and help us.
 
BluJet....I am so sorry that you are going through such a rough time... I was hoping that your new Dr. would be more helpful  but as I read the end of the post I saw different.... They have so many options with the pump...why go for the least  and not the best?
 
Good Luck..
Me,

I have been a spectator for so long..Now it's time to participate.......
 
Post Lamenectomy Syndrome, Spinal Stenosis, DDD....
1999 Hemi Lamenectomy/2005 Spinal Fusion(L4-S1)
Methadone 120 mg. a day/  30 mg. Oxycodone as needed(up to 4 x a day)
High Blood Pressure: Lisinopril HCTZ 10 mg. daily
Type 2 Diabetes: (March 16, 2009)
Metformin HCL ER 1000 mg. at night..Glipizide 10mg. 2X in the morning
Lantus 35 units at bedtime with Solostar Pen                                                                   

 


MsBunky
Veteran Member


Date Joined Jan 2010
Total Posts : 1097
   Posted 3/14/2010 11:16 AM (GMT -7)   
Hi Lorie,

I just wanted to send you a quick note to wish you well and send you some encouragement. I think that you made a very brave choice in finding a new doctor...so often we feel "stuck" with the ones we've had, even if they're not really helping us much anymore.

Give it a bit more time with the changes and hopefully you'll start seeing the results you want. Hang in there....I know how hard it is to find a manageable level of pain, but I truly believe in continuing to try.

Gentle hugs to you
Pam
Conditions: Fibromyalgia, Chronic Pelvic Pain, FAI, Reynauds, IBS, Interstitial Cystitis, Surgical Adhesions, Ophthalmic Migraines, Severe Hot Flashes (Surgical Menopause and drug related), plus physically unable to vomit due to Nissen, and I have extremely tiny veins...a joy for blood work or IV's)
Surgeries: Appendix, Uterus, Nissen Fundoplication for GERD, Left Ovary, Gallbladder, Right Ovary, TVT
Medications: Oxycontin, Tramacet, Cymbalta, Flexeril, Clonidine plus Vitamin D and Multi-Vitamin daily


bluejet2
Regular Member


Date Joined Feb 2009
Total Posts : 487
   Posted 3/15/2010 12:00 AM (GMT -7)   
Hi Me:

My situation has been frustrating to say the least, and I had no idea that most doctors absolutely refuse to take on patients that have intrathecal pumps already implanted by another doctor.

I had been going to this PM for 15 years, and up until about 3 years ago, I would not have even considered going to someone else. We had a wonderful rapport. I travel 2 hours each way to see him, so he went so far as to give me his personal pager #, as well as his home phone number so that he could be reached at any time as I occasionally wind up going to the ER because my pain gets totally out of control and I have been admitted every single time. He has always made himself available to any doctors attempting to treat me, as well as being willing to advocate for me if he felt that I was receiving substandard care. He was always willing to at least discuss new medications, different combinations of meds, increases, etc., but all of the sudden he just completely changed.

I don't know if he just got burnt out, or of he felt he had done all he could do with me, but he just refused to even discuss alternatives of any kind. Every time I had an appt. coming up, I would tell myself this time he is going to see how much I'm suffering and he is going to try something new, but every time I would be horribly disappointed. I totally understood and agreed that I did not want him to just keep giving me increases, but I felt that he at least could be trying different combinations of meds.

This new doctor does seem to genuinely want to help me, but I've only had one appt. with him. Honestly, for him to have made the changes he has made so far after only meeting me one time, I am impressed. I just pray that he will continue to try new things until we find what works.

Thank you for your concern and well-wishes.

Ms. Bunky:

Thank you too for your words of encouragement and well-wishes. I feel as you do that we have to keep trying, otherwise we have no hope that things will ever get any relief.

I have had a total of 23 back surgeries, and I have had people get real nasty with me and say "don't you think it's time you give up", and others accuse me of "enjoying surgery and being in the hospital because I just wanted to be waited on", when the truth is, I feel like it is my obligation as a wife and a mother to exhaust all options.

Again, I thank all of you who have responded - it has truly helped me to get through this rough patch.

Lorie
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