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melliflious
Regular Member


Date Joined Dec 2009
Total Posts : 79
   Posted 12/4/2009 8:04 PM (GMT -7)   
Hello!

I've been reading through all of your posts, it is amazing to see such a strong, passionate and caring group of people. I fell on the ice in February of 2008, landed square on my left shoulder and have had problems since. At that point I was in Iowa, saw doctors at almost every hospital in my area before getting sent up to Mayo. I saw a number of physicians and surgeons up there, was told not to come back by their top shoulder specialist. Their pain clinic was wonderful, but started really pushing a spinal implant before I'd had a final diagnosis. The doctor I spoke with was amazing, and actually told me that he himself had gotten the implant and that it had changed his life, but without having been diagnosed up to that point (I'd seen over a dozen specialists by then and had been diagnosed with 14 different things), I was very wary of spinal surgery of any sort.

In June this year, my mom and I flew out to Colorado and saw a handful of doctors out there. They diagnosed sub-scapular bursitis, scapular dyskinesia and nerve damage all down my left arm and shoulder. That put me up to diagnosis number 22, which ranged from carpal tunnel to a displaced rib and everything in between. They recommended pain meds and pt, and said that the spinal implant wasn't really an option. Since then I've shifted through a number of pain meds trying to find the right mix. The problem is, I haven't found anything that cuts my pain under a four that still allows me to function. I was seeing an amazing pt in Iowa, but am now located in a small town in central New York, where my options are extremely limited. My current pt is of the McKenzie school, and I have been very frustrated with her but have no other options within an hours drive, which in itself is physically difficult for me.

I'm currently enrolled in graduate school, working for my MA in History Museum Studies, but fell again two weeks before Thanksgiving and set myself back even further. I have only gone to one class since then, and am staring at a huge pile of homework that I'm struggling to deal with. If I try it with limited meds, it kills my arm. My professors are wonderfully understanding and are working hard to keep me caught up and in the program, but my classmates are a little less so. If I take my meds, it puts me in a state not quite worthy of graduate level school work :-) On a brighter note, I'm in a relationship with an amazing man who wants to marry me despite not having really known me before all of this, but at this point even planning a wedding would be too much for me.

I guess I just wanted to toss my story out there to people that seem to understand, and to thank everyone for the advice and support of each other that I've seen, even though it hasn't been for me. My support theivery has really helped me put things into perspective a bit. It amazes me how strong some of you are, and how long you have had to deal with your pain. I haven't even hit the two year mark, and some of you have suffered for over twenty. I just hope you know what an inspiration you all are :-)

Jenna
Pain Issue: Sub-scapular bursitis, scapular dyskinesia, nerve damage down left arm, shoulder and neck
Treatment: PT, Tens Unit, Oxycodone,Diazepan, Hydrocodone-APAP, Tramadol, Voltaren/Duac gel


melliflious
Regular Member


Date Joined Dec 2009
Total Posts : 79
   Posted 12/4/2009 8:07 PM (GMT -7)   
Oops and then I forgot about the point of my title! My PT keeps throwing around RSD. I'm very wary of being diagnosed by a pt, but was wondering if anyone else has experience with it, or what testing would show it. I've had too many x-rays, mri's (yes I agree with the other post, they're awful), contrast mri's, nuclear bone scans, and my all-time favorite EMG. I've had three of those, which is three too many in my book! Thanks!!
Pain Issue: Sub-scapular bursitis, scapular dyskinesia, nerve damage down left arm, shoulder and neck
Treatment: PT, Tens Unit, Oxycodone,Diazepan, Hydrocodone-APAP, Tramadol, Voltaren/Duac gel


Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 12/4/2009 9:58 PM (GMT -7)   
Hi Jenna...

Glad that you posted... You are right - everyone here is very supportive and caring, mostly because we can empathize w/ what each other goes through each day, dealing w/ pain and health issues. I'm sorry that you are dealing with chronic pain, but I am glad you found your way here. I'm glad that you are also in a good, supportive relationship, and it sounds like your mom is a good support to you as well?

I, too, think you made a good decision waiting on the spinal implant until you had a better diagnosis. That being said, they do help wonders for some people. I also understand what you are saying about the fine line between taking the meds that help - and being functional enough to do what you have to do. Many of us are in that same boat. My pain averages about a 7 out of 10 each day....and this is on a really high load of narcotics. Fortunately, I don't have many side effects - other than the oral meds just really don't work well for me.

So, I guess I really don't have any "good" advice for you... I know others will come along w/ that... but I just wanted to welcome you; say that I understand many of the frustrations that go along w/ all of this - and let you know that I hope to get to know you better!

--Tina
Pain Issues: Cervical/Thoracic back pain; migraines; carpal tunnel syndrome; widespread joint/muscle pain, nerve pain in hands/arms/feet; I also have Dysautonomia/POTS; CFS/Fibromyalgia; Severe Hypertension; Hypothyroidism; Addison's Disease; Mixed (Obstructive/Central) Sleep Apnea - on Auto BiPap; etc etc

Meds: MS Contin (480mg daily); Dilaudid (8mg/3x day); Actiq (1200 mcgs/1x per day); Soma (3x day); Neurontin; Atenolol; Midodrine; Phenergan/Zofran/Reglan; Effexor and on the list goes...

Future Plans: Intrathecal Pain Pump; already completed trial; awaiting my decision for implantation


Jim1969
Veteran Member


Date Joined Jul 2009
Total Posts : 2042
   Posted 12/4/2009 10:21 PM (GMT -7)   
Jenna,

Just my two cents but I wouldn't rule out what a PT might think just because they are not a doctor. Because they spend more time working with and on a person than a doctor does they sometimes see things that even a sharp doctor may miss during an examination.

Personally I think it would not hurt anything to gather up all of your test results, medical records, etc and find a neurologist that is familiar with RSD and go and have a talk with him/her. Really, what do have to loose. Also see if your PT will write something up explaining why she suspects RSD to show to the doctor.
2 confirmed herniated lumbar discs. Spinal Arthritis. Spinal Stenosis, diabetic peripheral nueropathy.


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 12/4/2009 11:21 PM (GMT -7)   
Hi, Jenna,
I want to add my welcome to the chronic pain forum, but am so sorry you have reason to be here. My problems all started with a bad fall, too, and I've take a few since and am terrified of falls. I'm quite a bit older, though, and I hate to see you struggling with all this at such a young age (not that any age is good).

I agree with Jim that PT's can sometimes really be knowledgeable, although that doesn't say this one's right. I'm familiar with the McKenzie method and years ago used some of those techniques; it's not bad, but in recent years I've found that's not what helps me. I think just finding a good PT is a challenge, but once you have one sometimes the exact method they use isn't as important as their effectiveness for you.

But I'm off track a bit. RSD is also now called Chronic Regional Pain Syndrome (CRPS) - nothing like confusing us more, eh? It's just different terminology for the same thing, but I would try to locate a doctor who works with this disease to have them evaluate you for it. My understanding is it basically can occur after a nerve has been injured and it can keep getting worse and become systemic. If you find somoeone who knows how to diagnose and treat it, they may at least be able to prevent it from getting worse. Since you were at the Mayo you've got experience with teaching hospitals; but you don't have to go back there, you just need to find someone - probably either a neurologist or a PM doctor - who has some expertise with this.

Hopefully others will be along to add who know more and have other ideas.

I'm glad you joined us, and also glad you found HW so helpful even in just the reading.

Again, welcome.

PaLady

melliflious
Regular Member


Date Joined Dec 2009
Total Posts : 79
   Posted 12/5/2009 12:57 AM (GMT -7)   
Thanks you guys! That is all really great advice. I'll talk to my PT on Monday and see if she has a recommendation for a doctor. I hope you're all doing alright, have a great weekend!!
Pain Issue: Sub-scapular bursitis, scapular dyskinesia, nerve damage down left arm, shoulder and neck
Treatment: PT, Tens Unit, Oxycodone, Diazepan, Hydrocodone-APAP, Tramadol, Voltaren/Duac gel


bsjaguar
Veteran Member


Date Joined Jun 2009
Total Posts : 974
   Posted 12/5/2009 4:00 AM (GMT -7)   
Hi, Jenna, welcome you to our forum. As you can see we are a compassionate group of just normal people, all with one common thing, Chronic Pain. Feel free to jump into any conversation here cause everyone has something to add and with luck we can learn from one another.

I was curious about all the testing you've had? Did they include your cervical spine along with the shoulder? I know you said you fell on your shoulder but alot of shoulder and arm pain can be caused by problems in the neck. Have you had any injections into the bursa? Don't know why I'm asking these questions cause I'm sure the Mayo clinic is alot smarter than me, heck I'm not even smarter than a 5th grader.

One thing I've noticed to is that you aren't on any extended release meds or meds for nerve pain. These may be something to talk to your doctor about.
---Jag---
 
DDD, osteoarthritis, fusion surgeries C-5/7 & L-4/5 both in 2006, torn meniscus left knee 2000 & 2002, buldging disc L-2/3


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13456
   Posted 12/5/2009 11:02 AM (GMT -7)   
Hi Jenna,
 
I too would like to welcome you to Healing Well. I am so sorry that you have to be here but very glad that you found us. It is just amazing the number of people that are afflicted with CP and the lists grows daily. Yes, you are so right, this group of people is the very best out there. It is so nice to have a place to come to and be able to sit down and write what is on your mind, or how rotten you may be feeling that day and know there are others right there with you that totally undrerstand.
 
It is almost like if you did not have bad luck you would have no luck at all. Wow, two falls on the same shoulder is just awful. Yes, I am sure the 2nd fall knocked you back months and months. Making a comeback is always so difficult.
 
I read about the therapists wondering if you have developed RSD. I would suggest that you google RSD, by the way they have added a new name to it too and I am at a loss at remembering what they call it, lol. Thats one of the pitfalls of CP, memory lapses. Go into one of the reputable websites once you google it and read about RSD. It is a whole new can of worms  in itself. They will list many of the symptoms associated with it and you can decide if any of those fit. It is bascially similiar to a bunch of nerves sort of like they are misfiring. I cannot properly put it in writing what I am trying to say. I am very familiar with this stuff  and remember when it first started being diagnosed by pain mgt drs back in the early 80's. No one believed the drs and ins companies would not pay for the testing said it was not a medical condition and yadda yadda. Boy, did they have to eat those words. RSD can be caused by trauma or injury too.  Some of the sypmtoms include shiny skin to the afflicted area, skin discoloration, temperature changes in the skin, of course just pain from haitis and many other symptoms. Being put on effective pain meds is a start in handling this problem and that is where a good PM dr comes in. Check it out on a good site. There really is no one test out there to dx RSD, its like putting all the symptoms together and coming up with the dx. The best drs available to handle this is a pain mgt dr knowledgable of the condition. Not every PM dr can properly handle a patient with RSD so be sure to ask any potential dr if they have patients they treat with it. It was pain mgt drs in the very beginning that were dxing RSD in patients.
 
I would ask the PT person if they know of any good pain mgt drs that treat RSD. Then find out if they accept your insurance. You will need to be ref by another dr most likely to see a PM dr. Rarely will they see you without a referral. Some folks do PT, have SCS implants, even pain pumps implanted for RSD. There is no cure for it either. The drs have to find what works best for the patient in controlling the symptoms. For your sake I do hope this is something that can be ruled out with you.
 
How I became so familiar with RSD is I worked most of my life for attys that handled worker's comp, personal injury, med/mal,  & SSD claims. I saw first hand many illnesses that happened as a result of injury or trauma. I remember when they first started dxing carpal tunnel syndrome and no one believed in it like the RSD. People that worked at GM here in Tx used tools that vibrated 8 hrs a day and these tools were used by thewir hands and their work was repetitive in nature. These folks were being dx'd with carpal tunnel syndrome and could not get help for a long time. All of our claims were denied and we had to file lawsuits left & right, lol. These drs and ins companies literally stick their heads in the sand for many years when a new medical dx comes along.  Of course, it was always the patient that paid the price for their ignorance. They loved throwing out that the illness was not recongnized by the AMA therefore it did not exist, lol.
 
And as one of the other posted, be sure that you have had a proper workup on your neck. Many, many times neck problems cause shoulder and arms problems.
 
Anyway, just wanted to say hi and welcome aboard. One thing that is nice to know is you are not alone in this battle. Take care and keep posting about yourself.
 

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.


FunnyGurl
Regular Member


Date Joined Nov 2009
Total Posts : 173
   Posted 12/5/2009 1:01 PM (GMT -7)   

Hi Jenna

Sorry about your pain and I hope they can give you the answer u deserve. 

My exhusband had RSD or CRPS now they say in both feet after some failed foot surgeries.  It was a process of elimination that came to the final DX.  It was very hard on him physically and emotionally as the RSD progressed ending up in a motorized scooter.

I took care of him for years but finally had to leave after he started to become abusive to me and my son. 

Now Jenna I am not telling you this to scare you but you want some info on RSD and yes I lived with my ex for 10 yrs and he had RSD for 7 of those years.  It was a very bad condition I would not want anyone else to have it at all.

Now you have a great support team and probably access to good Docs so I hope they will help you and take care of your shoulder and help with your quality of life issues. Good luck to you in your studies.

Rhonda

 

 


Humour is always the Best Medicine!
 
Fibromyalgia, DDD, 2 herniated Lumbar discs, OsteoArthritis Lumbar, Migraine, Dysthmic Disorder, Anxiey, Panic Attacks, OsteoArthritis Knee, Carpal Tunnel both hands, Currently Double Depression


melliflious
Regular Member


Date Joined Dec 2009
Total Posts : 79
   Posted 12/5/2009 11:50 PM (GMT -7)   
Thanks for all the welcomes. Its been wonderful seeing what a great group you have formed for yourselves. Jag, they've checked my spine up and down to no avail. I've also had a handful of injections, into my bursa and into muscles, but none have given me relief for more than two or three days.
Straydog, I'll ask my PT on Monday for a recommendation of a PM doctor. There is a hospital in town, hopefully they'll be able to help pinpoint this RSD mess and adjust my meds. They're really not working right now, which is really frustrating. Since falling again a few weeks ago, I've been pretty much unable to get out of bed. When I went home for Thanksgiving, I had to get wheeled through the airports. Last night I was up till about 5:00am, made for a long day today. But there was pretty snow on the ground when I woke up, so that helped. Granted I'm a little nervous about walking on it, as a fall on the ice is what started all of this, but it sure does look nice. Gets me excited for Christmas!
Pain Issue: Sub-scapular bursitis, scapular dyskinesia, nerve damage down left arm, shoulder and neck
Treatment: PT, Tens Unit, Oxycodone, Diazepan, Hydrocodone-APAP, Tramadol, Voltaren/Duac gel


skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted Yesterday 8:28 AM (GMT -7)   
Hi melliflious,

I too want to welcome you to HW! You've finally found somewhere where people care & best of yet understand what you are going through! I can't say enough wonderful things about HW & my HW family, they have helped me through so much!

I know how frustrating it is to not have a diagnosis (3 years and counting). Hang in there. All it takes is one doctor -- it's just a matter of finding the right one!

hugs,
Skeye

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13456
   Posted Yesterday 1:43 PM (GMT -7)   
Hi Jenna,
 
I just noticed you are using Voltaren gel and the FDA has issued an alert on this product because of liver problems. Please go to the FDA's website and read up on this.
 
Also, have you had time to google RSD and read any info about it? Do you exhibit any of the symptoms they list? I know too many questions, just have had this on my mind. lol.
 
Careful on the snow & ice. I really miss not seeing it from time to time. Take care and please keep posting and letting know how you are.
 

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.


melliflious
Regular Member


Date Joined Dec 2009
Total Posts : 79
   Posted Yesterday 6:19 PM (GMT -7)   
Straydog, I did see the post about Voltaren earlier. Thank so much for saying something, it probably would have been quite awhile before I heard about that on my own. As far as the CRPS, which is what I think RSD's new name is, I have weakness and limited range of motion and deep aching pain, but none of the other symptoms. I will make an appointment on Monday to get it checked out though. I'm wondering too if I should get my liver looked at, as I've been on Voltaren for quite awhile. The only PM doctors I've seen have been up at Mayo, I need to get one here in New York since I'm going to be here for the next two years.
Pain Issue: Sub-scapular bursitis, scapular dyskinesia, nerve damage down left arm, shoulder and neck
Treatment: PT, Tens Unit, Oxycodone, Diazepan, Hydrocodone-APAP, Tramadol, Voltaren/Duac gel


White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3610
   Posted Yesterday 9:21 PM (GMT -7)   
melliflious
I to want to Welcome you the Healing Well Chronic Pain forum! You really have come to the right place! We can't cure you but we sure can listen to you and give you support! Are you sure they said there was nothing wrong with the nerves in your neck or Cervical Spine? With the weakness and limited range of motion, and with your pain, it sure sounds funny! You said you had EMG's done what did they show? I do hope they can get to the bottom of it all and then can get you on the proper treatment! Hang in there melliflious, your not alone with your pain you have a whole new family here that will share your burden and help give you support! I wish you well and hope it all works out for you!

Good Luck to You!


White Beard

LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted Today 8:49 AM (GMT -7)   
melliflious  Welcomeyeah   I started out on these forums just as you did about 9 months ago.  I came here looking for something.  Anything really. I was lost trying to come to grips with the pain and changes it causes in ones life.
 
I have RSD.  Mines rare.  RSD of the urological system.  It took years for this Dx.  I have also had many many Dx's.  I go to a PM and take my meds as prescribed.  Alot of pain meds but I love the treatments I go through.  I have to start them again next week 6 straight weeks.  But its well worth it.  So the above member is so right find a good PM.  Opt for the treatments first then look at the implant.
 
My PM said if it wasn't RSD the treatments would work at all not even a little.  They take about about 25% of my overall pain.
 
So take your time the pain will always be there.  Find the best answers the satisfy you.
 
Laurie
Kidney Diseases and Disorders
              Moderator
 
39 yr young female with,
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension, Urological RSD

Also CHF (Congestive Heart Failure) and Sleep Apnea

Hopefully NO MORE........


melliflious
Regular Member


Date Joined Dec 2009
Total Posts : 79
   Posted Today 11:39 PM (GMT -7)   
Thank you guys, again, for this outpouring of support. Since falling again before Thanksgiving, things have been pretty rough, and its horrible that you're all in the same boat but nice to have people that understand. White Beard, they've run tests on my spine from top to bottom, and nothing has shown up on any of the tests. That I think has been the biggest frustration of all. The only thing that has ever shown up on anything was some abnormalities in the function of my scapular muscles in an EMG I had in June.

LLPULV, I am so sorry to hear that you have to deal with that? What has your treatment for RSD been, if you don't mind me asking. Is it specified to the location of the problem, or general? I had another PT session this morning, and she's decided to gear her treatment to RSD. I'm heading home for Christmas in a couple of weeks and have a month at home, so I'm going to call Mayo tomorrow and see if I can get back with their PM department to get a more official word, and to tweak my meds. Right now I'm a little worried about even waiting that long. I spent all weekend really unable to get out of bed, but I'm worried that if I were able to get in with a doctor here, it wouldn't be enough time to adjust anything at all. Top that off with not being able to sleep because of my stupid shoulder and it has been a long week already. Sorry for venting, I really hope everyone is doing well!

Jenna
Pain Issue: Sub-scapular bursitis, scapular dyskinesia, nerve damage down left arm, shoulder and neck
Treatment: PT, Tens Unit, Oxycodone, Diazepan, Hydrocodone-APAP, Tramadol, Voltaren/Duac gel

Also random hearing loss in both ears at age 18ish, not sure exactly when it happened or why. Got amazing Oticon hearing aids at 20, they've worked wonders! Keep hoping that my doctors can connect my ears to my shoulder and fix them both all at once!! A girl can dream, right?


LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 12/8/2009 8:39 AM (GMT -7)   
I'm so sorry your shoulder is effecting your sleep so much. My husband and two rotary cuff surgeries in one year and its been 1 1/2 yr since he did it. He still has issues sleeping with the shoulder.
 
My treatments are done on the nerves that surround my kidneys and bladder.  They put some kind of medicane injected right into the nerves. Like I said it doesn't take all the pain away only a small amount but it makes it bearable along with my pain med treatment.  Its something like a nerve block but they call it something else. When I go in I know on Mondays I will get the heavy pain meds so I don't use my pain meds for that day so I can get a few stashed.
 
The PM doc should be able to tweak your meds over a month. I would think you could go in twice over the month.
 
I can't do PT it wouldn't help my RSD it would only aggrivate it.   My husband had so much PT it NEVER did him any good.  His shoulder froze so many times plus he thought they were never aggressive enough with it.  The only thing that helped my husband was the torture chair.  It was a huge chair they brought into our livingroom that he would sit in and strap his arm down.  The thing moved his arm in all directions for three to six hours a day.
 
I saw that you are in school. Do you have a type of medical university around you?  We do Vanderbilt and its a wonderful place to find information and answers.  When you flew to Colorado and they mentioned Nerve damage, that right there was your first sign of RSD.  As my doctor called it, its nerve damage but the damaged nerves read pain, pain and more pain even if it really shouldn't be feeling it. RSD is something doctors find when injury or surgery is involved. One of those opinion type Dx's.
 
It took me from the age of 18 to the age of 38 to get that Dx.
 
Laurie
Kidney Diseases and Disorders
              Moderator
 
39 yr young female with,
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension, Urological RSD

Also CHF (Congestive Heart Failure) and Sleep Apnea

Hopefully NO MORE........


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13456
   Posted 12/8/2009 7:04 PM (GMT -7)   
Jenna, vent away any time you feel like it. We have been there and done that. Thats the beauty of this forum we totally understand where you are coming from. I do hope you can get some medical care real soon. Take care.
 

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.

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