feeling worse and worse each day - what should I do?

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nasalady
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Date Joined Sep 2009
Total Posts : 1176
   Posted 10/13/2009 10:56 AM (GMT -7)   
Warning: long, rambling, somewhat incoherent post.

It's so disappointing because I was really beginning to feel better until this recent flare of whatever else I have (some new AI disease which started flaring a couple of months ago).

It's becoming harder and harder to go to the office and work a normal day. Vertigo, nausea, extreme fatigue, blurry vision, headaches, and (I don't remember what it's called but its when you can't stay awake and just fall asleep in the middel of doing somthing). Edit: I remembered!! Narcolepsy!!

My rheumy now believes I may have lupus (started me on Plaquenil). I'm just too sick to continue with this....I don't know how much longer I can hang on. Teaching is now incredibly tough as well. My eye sight goes in and out...sometimes I can't even make out faces, other times my vision is perfect. My hearing seems to fluctuate too.

Brain fog has really caused problems at times. While teaching (my part-time job), I've forgotten what I was trying to say in the middle of a sentence. Or forgotten which algebra problem I was doing while I was doing it!! At my full-time day job, I've forgotten familiar words and/or names of people I've known for a decade!! Makes it difficult to carry on a conversation.....people look at you funny when you can't rememeber something so simple.

I made a mistake on a document requesting a service recently. The person who implemented the request caught it, but what if he hadn't? I'm starting to worry that I will make a mistake that won't be caught. What it it affected the spacecraft?? (I support a NASA mission).

Or, if it is caught, it could reflect badly on our team, and that would cause embarrassment. I don't want that.

If I'm going to end up on disability, do I wait until the last possible moment or do I leave with dignity intact? I think waiting until the bitter end will be humiliating, because it will become obvious by that time that I can no longer do my job.

I also worry because I have to drive to work and it's becoming increasingly difficult to drive when I'm having a bad day. The blurry vision and vertigo can make it really scary, also I fight sleep at times, and struggle to stay awake by slapping or pinching myself. I definitely feel that I'm as dangerous as a drunk driver when I'm like that. It's just not responsible of me to continue....I don't want to die in a car wreck and possibly take innocent people with me.

I do work at home some days, but have to take frequent breaks to lie down and rest. Sometimes my fibro pain is very hard to deal with....sometimes I can't even sit long because my behind hurts too much. (Or is that polymyositis?? Need to ask my rheumy.)

Other symptoms which may or may not be polymyositis: difficulty swallowing, difficulty speaking. These are sporadic, the swallowing issue is very noticeable with pills....they frequently get stuck half way and I have to wait for them to start moving again. The speaking problem affects my teaching; at times my mouth and tongue feel "clumsy", and my tongue feels larger than normal. I'll be talking and in the middle of a sentence I'll bite my tongue! Embarrassing and painful!!

Weak/painful thigh muscles: difficulty rising from sitting position....muscles feel "stiff" sort of like they're made of cardboard or something. Hard to describe. At times even a gentle touch on the side of my thigh is extremely painful.

Weak/painful upper arms: very hard to use the blow-dryer on my hair. Difficult to raise my arms in order to brush my hair or wash it in the shower. Carrying my daughter Emma is scary....I feel as though I might drop her and she only weighs 22 pounds! If I try to do much with my arms my upper arms start to ache very quickly. For example if I decide to write on the whiteboard while teaching instead of using the overhead projector the pain in my upper arms becomes unbearable very quickly. And my arms become "tired" and I can no longer use them until they rest for a while.

2 questions:

Does any of this sound like polymyositis?

Is it time for me to go on disability whether or not we can afford it?

If you read this far, thanks!!
JoAnn
Autoimmune hepatitis, Hashimoto's thyroiditis, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD. Possible lupus and/or polymyositis - diagnoses pending.

Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Mirapex, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP


autoimmunediseasesgfliving.blogspot.com

Post Edited (nasalady) : 10/13/2009 11:59:01 AM (GMT-6)


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 10/13/2009 11:18 AM (GMT -7)   
Nasalady, I'm not equipped to answer your questions about polymyositis and narcolepsy, (edited to write brain fog rather than narcolepsy, proof of my own brain fog ) but others here will chime in with their opinions. What little I do know about disability is the application process can be very long and cumbersome so if it were me, I wouldn't wait till the last minute. My question for you is are you confident that your rheumy is thorough and knowledgeable. Sometimes, when things are falling apart around us and we don't get the thorough physical workup we need, it's time to move on to another specialist. Maybe your current rheumy has already done that so I may be out line here. But I'm a little concerned that you have so many questions. I imagine Bill will address your concerns about polymyositis. The brain fog question is a real toughy when dealing with the kind of work that you do. Have you discussed this with your supervisor? That may or may not be the right thing to do but I'm sure it causes you a great deal of distress.

I hope you get a handle on all of this real soon. Sending gentle hugs your way.

Pat
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

prednisone, plaquenil, leflunomide, neurontin, synthroid, triamterene, actonel, niaspan, tri-est, cymbalta, tricor, acifex


nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 10/13/2009 11:30 AM (GMT -7)   
Hi Pat,

Thanks so much....yes, I have confidence in this rheumatologist (he's my third! :)). I've fired two others recently because they wouldn't listen to me, among other things.

I just began seeing this rheumy a couple of months ago; he's in the process of diagnosis. I haven't actually told him about all of my muscle issues; I've been blaming stuff like that on fibromyalgia, which is one of my established diagnoses.

Bill is the one who first told me about polymyositis so I've been researching it a bit and found that some of my symptoms seem to be in line with that. I do need to talk to my rheumy about all of this, of course.

Take care,
JoAnn
Autoimmune hepatitis, Hashimoto's thyroiditis, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD. Possible lupus and/or polymyositis - diagnoses pending.

Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Mirapex, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP


autoimmunediseasesgfliving.blogspot.com


Jenkstrojanmom
Regular Member


Date Joined Sep 2009
Total Posts : 44
   Posted 10/13/2009 2:40 PM (GMT -7)   
nasalady I began the process of filing for disability and there is so much paperwork it is crazy. I do still work when I can so I know how you feel it is hard most days to go but if you don't go you don;t get paid (I am a teacher assistant) I would say if you have a principal that understands what you are going through stay at work as long as you can and file for disability I have a good friend that works in the appeals department of ssa disability and she told me that if you have a job and are actually trying to work then it works IN YOUR FAVOR with disability because you are trying to maintain competitive employment. When you do start the process the please don"t give up,today I saw the dr that social security se tup for me to see and now I just wait and hear back from them all in all it have been a total of 4 months from start to now.
Take care of yourself and learn to not take on more or do more than your body can handle, It is hard I know but you can do it. The more rest the better.
Angela
 
JenksTrojanMom
Lupus,Sjogrens Syndrome,R.A.
Mother of one wonderful teenage son,blessed wife
33 yr old  Teacher Assistant in Okla.


nona43
Regular Member


Date Joined Jul 2009
Total Posts : 42
   Posted 10/13/2009 6:50 PM (GMT -7)   
Hi Nasalady, I am so sorry you are having such a hard time I do not know about narcalepsy but your other symptoms sound familair probably to alot of folks here. when I stoped working due to my illness I went out on the short and long term disability insurance that I had at work do you by any chance have this coverage?if you feel it is time for you to stop working then this insurance if you have it will help you out financialy until you get approved for ssd I have not worked since 2004 and my long term from my job is still paying me along with ssd so I still make as much as when I worked I will get the long term until i am 65 I am 43 also my insurance co had there own attorney to help with the ssd so it took a fraction of the time that it would have taken me by myself, I know it is hard to give up work I was so worried about what people thought of me to but when I started flopping around on the floor with siezures I said its time to go, my boss agreed he was very understanding I was very fortunate I hope this helps some sorry I ramble I really hope you get some relief soon I will keep you in my prayers and thoughts............nona
dx Lupus,whith  brain, kidney ,heart invovment
Rhumitoid Arthritis ,seizures ,autoimmune hepatitis.
Meds-planquanil, lamictal ,lopressor ,imdur ,nitro, vtaminD ,metformin,
synthroid, lortab, phenergan, xanax ,prednisone ,kenelog injections
cytoxan, remicade
 
  Never Give Up!
                          nona


Monalisa <3
New Member


Date Joined Oct 2009
Total Posts : 11
   Posted 10/13/2009 7:20 PM (GMT -7)   
hi nasalady,
I work in the medical field and some of the symptoms you are describing sound like you need to have some tests done, like an MRI or CT of your head/brain. I often see patients with some of the problems you are describing and they will get some scans done and sometimes it helps point them in the right direction. I'm not a doctor but maybe asking about having some tests performed so a professional radiologist can see whats going on may help. I hope things get better.

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1299
   Posted 10/13/2009 7:56 PM (GMT -7)   
Joann,
 
Polymyositis has a distinct pattern of muscle weakness which is normally, but not always, the leading symptom.  It affects the proximal muscles around the hip and shoulder girdles.  Patients have difficulty getting out of chairs, climbing stairs. and raising their arms over their heads.  General weakness and fatigue are universal symptoms.  The description of symptoms you give sounds like polymyositis or dermatomyositis (a cousin disease to PM but it is accompanied by skin symptoms and has a different etiology).  Disagosis is usally made by symptoms, blood tests and a muscle biopsy.  Some doctors order other test but they do not conclusively diagnose these diseases.
 
Dysphagia (swallowing problems) is another common symptom of a myositis disease.
 
I have MCTD (lupus, scleroderma and polymyositis) and I had an extreme case.  All the symptoms you describe could be PM and I also had dysphagia.
 
There are other diseases that can produce similar symptoms and weakness and fatigue alone do not define PM.
 
 
Hope you can get answers.  If you are not satisifed with your doctor get a second opinion.  Not many docs know much about myositis diseases and if you are near a teaching hospital with a good rheumatology department that is a good place to find an experience doctor.
 
Another site to check out is
 
 
Bill
MCTD (lupus, scleroderma, polymyositis).  Diagnosed 2005.  Kidney, liver, GI tract, dysphagia, raynauds, Barretts esophagus, quadriplegic in 2005.  Recovered and now active in skiing, tai, chi, hiking, golf.  Meds: prednisone 2.5mg, imuran 25mg, amlodipine, benazapril, omeprazole, potassium, folic acid, vitamins, maxide and various supplements and vitamins.
 
Remain optimistic and you can overcome the odds.


nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 10/13/2009 8:19 PM (GMT -7)   
Thanks Angela, Nona, Monalisa < 3, and Bill; I appreciate all of the information.

Angela, I had heard that there's a lot of paperwork to get through when filing for disability; my employer is very supportive of me and I think the problem is mostly me....I just don't know when to quit. I think one reason I'm not getting better is that I just don't get enough rest, and I won't get enough rest until I stop working.

Nona, yes, fortunately I do have the long-term disability insurance that should help me a lot if and when I do file for disability. This is how I think it works: I have to have enough hours of vacation and sick time to cover ~ 1/3 of my salary for 6 months (so that's about 350 total vacation and sick time hours, I think)...that's to supplement the short-term state disability insurance. After 6 months I can start the regular disability if I get it, is that right? Then the long-term disability will kick in and supplement that up to 2/3 of my regular (gross) pay. Since they won't be taking any taxes out, I will end up getting approximately 85% of my regular pay. The problem is that I actually work two jobs right now, a full-time and a part-time. We would have a hard time making it without the part-time job, so it scares me that I would have to quit both the full-time and the part-time job, because I think we will have to sell our house and find something cheaper. But I guess you do what you have to do......

Monalisa < 3, thanks for your advice. I did have an MRI done last year and it was normal, but maybe I should get another done. The problem is that I have celiac disease, which can mess with your brain and cause neuro problems, plus possible lupus, which can also cause neuro problems. Last year when the MRI showed nothing (except that my brain is apparently shrinking faster than normal, which is probably a celiac thing) my neurologist decided that all of my neuro issues were due to celiac disease. But I just don't know...it's really confusing when you have so many different AI diseases!!

Bill, thanks so much for the info on polymyositis; I never would have known about it except that you mentioned it in an earlier reply to one of my posts! I will check out the links you gave me.

I know I'm scared to go on disability because of our financial issues, but there's more to it than that. I'm so sad and depressed by all of this I can't even express how bad I feel....because my day job is my DREAM job! I'm a scientist at one of the premier research institutions in the world and I support a NASA mission. I love love LOVE my job! I was 42 years old when I got my PhD and was hired by this university, and the miracles behind this simple statement would boggle your mind.

Twenty three years ago I was separated from my drug-abusing first husband, on welfare and food stamps, trying to raise my four kids the best I knew how. I decided to go back to college. It took 12 years to complete my bachelor's, master's and Ph.D., but it was so worth it! Mostly because of my current job!!

And now I have to let it go? That's just so unfair! :(

I know that everyone on this forum has their own stories and that lots of you will totally relate to the pain of giving up your dream, whatever it was. I suppose I'm going through the grieving cycle: denial, anger, bargaining, depression, and acceptance. Well, at least I'm going through the first four, over and over again! I haven't gotten to acceptance yet.

I'm crying as I type this....thanks for listening to me vent. I apologize for my self-centered little pity party; I guess I needed to get it off my chest though.

(((hugs))) to all of you,
JoAnn
Autoimmune hepatitis, Hashimoto's thyroiditis, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD. Possible lupus and/or polymyositis - diagnoses pending.

Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Mirapex, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP


autoimmunediseasesgfliving.blogspot.com

Post Edited (nasalady) : 10/13/2009 9:23:12 PM (GMT-6)


Agmaar
Regular Member


Date Joined Jan 2009
Total Posts : 376
   Posted 10/13/2009 10:13 PM (GMT -7)   
Hi JoAnn -
 
I'm sorry you're having problems like these.  I can really relate to what you're going thru tho.  My underlying problems are a little different - psychiatric stuff, Lyme Disease - fatigue, malaise, cognitive deficits.  But I understand what you're going through.  I worked on the Space Shuttle boosters and also did cargo integration - a Master's and 35 yrs experience in aerospace (structures, fatigue, fracture mechanics). 
 
I struggled the last 3 yrs I worked.  Like you, I developed elaborate adaptive/ compensating things to get me thru the work week.  Double and triple checking everything (and finding mistakes once in a while) and putting off decisions or turning in work til I felt more alert.  It really takes a toll on you too.  And adds to all the stress you already have.
 
I didn't expect to reach my limit where I did - but then I guess you can only work at max capacity for so long.  I crashed physically and mentally and spent a few days in a psych unit.  I have been off work ever since.  It's very disappointing ... but when I look at what I was doing and how I felt .. well, it really wasn't safe.  Just because nothing really bad happened during that period doesn't mean that what I did was a good idea. 
 
Having been off work since last Dec., I'm really relieved that I don't have to go back to that situation.  We're adjusting financially, and my LTD co. has contracted with an advocate co. to put me in for SSDI. 
 
Anyways, I have a few suggestions.  If your employer is large enough you're probably covered by Family Leave (FMLA).  That will cover 3 months.  Will your Drs support your short term disability?  That will give you some time to work thru some things - and be free from all the pressure you're under.  You already know that you can't continue to go on like you are now indefinitely.  FMLA and Short Term will give you some time to figure things out.
 
After you've been out from underneath all the stress and pressure your'e feeling, you can work with your medical people to decide on Long Term Disability.
 
Something I would suggest is to get a formal neuropsychological exam.  I went thru a neurologist and he actually ordered the exam.  The neuropsych exam is actually a medical procedure and not a psychological test, and so it was covered by my insurance.  You could check with your ins. to find out.  The test itself is like a SAT test on steroids ( 7 or 8 hrs).  They check all facets of cognition.  Different tests look at verbal and math skills, short and long term memory (audio and visual), processing speed, problem solving, matrix reasoning, and more.
 
It was very worthwhile.  What I thought was a memory problem was really a little different.  While much was intact, there were major deficits in processing speed, problem solving, and matrix reasoning.  And there is a literal IQ drop.
 
You could really use some more information about your situation.  You don't want to give up too easily on your educational background and a job you really like.  I think it would help you to have a neuropsych exam so you can see where/ what problems you may actually have with cognition.  Having a realistic assessment of where you're at will make it easier for you to come to a realistic decision on your future employment.
 
On yeah .... I'm still not driving - really for the reasons you've given.  The financial part will have to sort itself out.  If I'm approved for SSDI then we'll definitely be looking at moving to a low cost of living area (but close to grandkids, so there is that).
 
I never expected to end up where I am now at 59.  I have a lot of education and experience that I can't use now.  But ... the overwhelming feeling I'm left with is relief ... that I won't be going back to a situation I'm really not capable of doing now.  It's a huge relief that I don't have to be constantly alert for mistakes, double and triple checking everything, trying to work thru the days of brain fog.  The consequences of mistakes I could have made involved costly repairs and flight safety. 
 
Sorry if this has rambled.  I'm too tired now to find any more typos.  Please post how you're doing and any questions you may have.  You can work thru this.  The challenge is to reinvent ourselves to be as productive as possible.  And you may yet be able to do work like you've been doing - but with different circumstances that will make it possible.
 
 
 
 
 
 
Rich
 
Lyme, anxitey, depression, chronic C. Pnuemoniae
 
"... expect the unexpected ..."  (O. Wilde)
 
"I am an old man and have known a great many troubles, but most of them never happened." (Mark Twain)
 
 


bird lady
New Member


Date Joined Sep 2009
Total Posts : 18
   Posted 10/13/2009 11:20 PM (GMT -7)   
So much, so many, Praying for peace, love, guidance, and wise solutions for all .

nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 10/14/2009 8:09 AM (GMT -7)   
Rich, many many thanks for sharing your story.....I relate very well to what you went through. I grieve for your loss (35 years in aerospace, working on the Space Shuttle!), but it does help to know that I'm not alone in this.

And thanks too for your great suggestions; I will definitely ask my neurologist about a neuropsychological exam. I feel as though my IQ has dropped at least 30 points and I know I've lost some vocabulary (I used to be a walking thesaurus). My short term memory seems to be shot full of holes...everything leaks out.

I will have to discuss disability with my doctors; my neurologist and rheumatologist would probably support me in this, but I need to fill them in on all of the details of my problems.

As you point out, there's always a silver lining. If I did actually stop working, I'd get to spend more time with family, and would probably move closer to my elderly mother and my grandkids. That would make up for a lot! Plus the decrease in the stress level would help immensely. I can really understand your sense of relief that you don't have to struggle anymore to do a job you're no longer capable of doing.

I do hope you will be approved for SSDI; you and your family are in my thoughts and prayers.
Take care,
JoAnn
Autoimmune hepatitis, Hashimoto's thyroiditis, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD. Possible lupus and/or polymyositis - diagnoses pending.

Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Mirapex, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP


autoimmunediseasesgfliving.blogspot.com


nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 10/14/2009 8:12 AM (GMT -7)   
Thanks for your prayers, bird lady.

Take care,
JoAnn
Autoimmune hepatitis, Hashimoto's thyroiditis, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD. Possible lupus and/or polymyositis - diagnoses pending.

Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Mirapex, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP


autoimmunediseasesgfliving.blogspot.com


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 10/14/2009 10:15 AM (GMT -7)   
The neuropsych exam is what really cinched both my LTD and SSD for me. The insurance companies can't really argue when you have a brain-intense job and you have drs test proving you've lost cognition, memory, processing speed, and even IQ points.

It also was nice to know I wasn't imagining losses in those areas, it was/is all too real.
The sooner you start the process, the sooner you can get settled & release the stress around the whole disability thing -- and reduced stress really does result in symptoms improvement!
Lynnwood, Lupus & Sjogren's Moderator
Life is far too important to be taken seriously. - Oscar Wilde, 1882


jesimae
Regular Member


Date Joined Oct 2009
Total Posts : 109
   Posted 10/14/2009 10:35 AM (GMT -7)   
The symptoms that you are describing are neurological. I would see a doctor pronto. Very dangerous to do much of anything with the symptoms you're having. Something as simple as losing your balance and falling could have serious consequences. Definitely agree that an MRI is necessary and maybe even a referral to a neuro. Good luck and keep us posted!
Jessica, diagnosis: unsure


nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 10/14/2009 11:52 AM (GMT -7)   
Thanks Lynnwood, I definitely ask my neurologist about the neuropsych exam.

jesimae said...
The symptoms that you are describing are neurological. I would see a doctor pronto. Very dangerous to do much of anything with the symptoms you're having. Something as simple as losing your balance and falling could have serious consequences. Definitely agree that an MRI is necessary and maybe even a referral to a neuro. Good luck and keep us posted!


Hi Jesimae,

Thanks for your concern. I did have an MRI last year, which showed nothing except that my brain is shrinking or atrophying a little faster than normal aging would cause (celiac disease can cause this). I see two neurologists on a regular basis (I have another appt next week) because I've had neuro symptoms off and on for quite a while plus I have sleep apnea. One reason I'm in a wheelchair is because I'm afraid I could fall during a vertigo episode. My neuro symptoms all but went away when I went gluten free so obviously were related to celiac, but now they're back with a vengeance. Could be lupus-generated? It gets a bit confusing because I have so many different ailments plus I'm on lots of powerful drugs with side effects.

JoAnn
Autoimmune hepatitis, Hashimoto's thyroiditis, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD. Possible lupus and/or polymyositis - diagnoses pending.

Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Mirapex, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP


autoimmunediseasesgfliving.blogspot.com

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