I've taken a turn for the worse

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Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 10/6/2008 4:46 PM (GMT -7)   
Hi Everyone:

I know I haven't been around to much lately. I had to take a small break and now I'm back to try to offer support to everyone. I'm sorry that I haven't responded to many of the posts. I'm totally wiped out. I saw my Internist today and she's very worried about my condition. I was in the ER a week ago to for Chest Pains and Pressure. They determined that I had inflammation around my lung. The gave me a IV dose of 120mg solumedrol.

Today, when I saw my Dr. she was very worried, she said I'm looking gray. She said that my CRP is almost 3 times the normal amount. She said that my size of my red blood cells are so huge that she's frightened for me. She also commented that my WBC is only 2.3 and I need to stay away from large crowds. That when people come into my home, they should wash their hands and avoid touching me. With my immune system so low, they prefer to keep me at home, as I most likely would pick up an infection in the hospital.

My Internist and Rheumy had a long discussion and my Rheumy said that there is no possible way that I could be taken off my meds to treat my lupus. He said that they would be doing a "HUGE" disservice to me. My Internist was thinking maybe I should have a drug holiday.

My Dr. told me to return to the clinic if I worsen over the next few days. Past history has shown when I'm "gray" I'm about to become very very ill. I'm just so frustrated they don't know what to do for me. She thinks the MDS is advancing and she was going to call my Hem/Onc this afternoon.

Anyway, I want to welcome all the new folks and I'll attempt to keep up with responding to posts. I know I'm really out of sorts tonight, but hopefully tomorrow I'll be able to post. Thanks for being here for me and I've really missed you all.

Love,
Barb
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, RA,MDS (Blood Cancer). Tons of meds.


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 10/6/2008 4:55 PM (GMT -7)   
((((((((((( Barbara ))))))))))))

Sending you some hot tea, a big hug, prayers, and . . .

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 10/6/2008 5:05 PM (GMT -7)   
I am sending you positive thoughts and energy. Drink warm tea and rest. Don't worry about the rest of us, just take care of yourself.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 10/6/2008 6:50 PM (GMT -7)   

Barbara,

   I am so very sorry!  I will be praying for you.  Love ya, Judy


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 10/6/2008 7:18 PM (GMT -7)   
(((((Barb)))))

I've been out of town and out of touch and just poked my head in for a minute and was dismayed to read your post. I'm so sorry and so worried about you. Please let us know what the oncologist has to say about your MDS. I do not want you to get any sicker! I'll try to give you a call tomorrow.

(((Hugs)))

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

prednisone, cellcept, plaquenil, celebrex, neurontin, synthroid, triamterene, ultram, actonel, tri-est, imitrex, cymbalta, tricor, acifex, multivitamin, calcium w vit D, fish oil, aspirin


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 10/6/2008 9:36 PM (GMT -7)   
(((((Barbara))))))
Been out of it and not on the pc much but glad i saw you post. I'm so sorry this is happening. I'm glad the docs all seem to be somewhat talking to each other and I hope that they get on the stick on this. Has there been any more discussion about the bone marrow transplant? I hope you are getting lots of rest and staying away from sick people. I will keep praying for you and wishing you the best. I will keep my fingers crossed and hope that somehow they will nip this in the bud. Well, lots of good wishes your way.
Love, Marji
--Sometimes I think the surest sign that intelligent life exists elsewhere in the universe is that none of it has tried to contact us. Bill Watterson (1958-) cartoonist "Calvin and Hobbes"
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy, GI nightmare
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Detrol, Klonopin, Ultram, Vicodin, Restasis, Albuterol, steroid injections and pred prn


smokeyswife
Regular Member


Date Joined Oct 2006
Total Posts : 281
   Posted 10/7/2008 4:51 AM (GMT -7)   
Barbara, please take it easy and try to get the rest you need. You are in my thoughts and prayers. (((BARBARA)))

Connie
 
 
 
 
diagnosed with RSD in March of /03, diagnosed with Lupus in Sept./06.Thyroid Disease ,RA
Taking Methotrexate, Plaquenell, Folic Acid, Synthroid,Prednisone, Pantoloc, Singulair, Tramadol, OxyCodeine and extra Strength tylenol when needed,and Zytram.


Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1547
   Posted 10/7/2008 6:25 AM (GMT -7)   
(((Oh, Barb))) I'm so sorry to you're feeling so badly. You go through so much and you stay so strong. A WBC of 2.3 sure is low. If the docs do admit you, they may have to place you in isolation and that's no fun. I'm praying for you and sending lots of positive energy. Keep us updated, okay? Love, Butterflake 

Dx: SLE ('05), depression, diabetes, fibromyalgia, gerd, sleep apnea, hypertension, IBS Tx: CellCept, plaquenil, prednisone, lisinopril, actos, lipitor, nexeum, prozac, seroquel, celebrex, actonel
prn: arthritis tylenol, neurontin, promethazine, ambien.  multi vit, C, flaxseed oil, acupuncture
Donna
 


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 10/7/2008 7:21 AM (GMT -7)   

((((barb))), Life sucks  and than ya get sicker. I'm sorry I wasn't any help or comfort to you yesterday. I guess I'm kind of wrapped up in this appt today. I'm glad you decided to come here and talk to folks who at least to some degree understand what you are going through. Don't you just want to go down to the lake and pick up some rocks and skip them accrossed the water so hard and long until you are so sore and tired you just collapse? I guess that's just how I get when I feeel like I have to fight a battle with my hands tied behind my back. I do feel your frustration. I'll call ya tonight when I get home.

love ya

carol 


 
Possible scleroderma.  stage 4 COPD, sleep apnea, Osteoporosis,osteoarthritis
Prednisone,plaquanil400mg,azythromyacin,vicodin 4x5mg,Evista60mg, Effexor 150mg,Xanax 1.0 x3,Singular,nitro spray, spirivia,aciphex,lasix,inderal,pot.chlor.,B12 
 Did you ever know that your my hero?
 
 


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 10/7/2008 8:16 AM (GMT -7)   

Hi Barbara,

You're in my thoughts and prayers too.  I was just told by my primary that my red blood cells are too big also. He's checking me for a vitamin B12 deficiency. I guess there are a lot of reasons why the cells can be big, right?

It sounds like your doctors are really looking after you well and staying on top of things.  What a blessing. Let us know how you're doing okay...

Love

Ginny


I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, Tramacet, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 10/7/2008 8:27 AM (GMT -7)   
Hi Rosie, Redrose, Judy, Pat, Marji, Connie, Donna, Carol, Ginny:

Thanks everyone for your thoughts, prayers, and positive energy. I really appreciate them, it helps me to know that I have you all on my side.

Ginny, I have a B12 problem and I give myself a B12 shot weekly. I hope that you're not having problems with your B12. I thought I should mention to you that our immuno suppression drugs can cause our red blood cell size to be bigger. It's something that the doctors expect up to a certain size. Once it crosses that line then there are ?'s as to why mines so high. Mine have always been high but now it's taken a huge jump and she's uncertain as to why. I hope that yours is just from the imuran that you take and nothing more than that. I'm wishing you well and praying for you.

I managed to get a bit of food down with my morning meds. My nausea seems better since I've stopped taking the viagra. I'll be waiting to see how the next week goes w/o the medication. I hope each and everyone of you are having a good day. Please know that you're all in my prayers and thoughts.

Love,
Barb
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, RA,MDS (Blood Cancer). Tons of meds.


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 10/7/2008 7:00 PM (GMT -7)   
((((( Barbara ))))) bless your heart. You are in my thoughts and prayers. Take good care of yourself! Love ya
Stacie

Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Hashimoto's, Celiac Disease, Raynaud's, Lupus and Sjogrens
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Darvocet (as needed) and magic mouthwash (for mouth sores)


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 10/7/2008 7:04 PM (GMT -7)   
((((((((((((((((((Barbara Lee)))))))))))))my prayers are with you!
Forum Co-moderator - Crohn's Disease
We will find a way, or make one.-Hannibal (crossing the Alps in the 15th Century on war elephants) 
Make sure your suffering has meaning...
All suggestions/options/opinions are caveated with please consult with your local health care provider...


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 10/8/2008 4:38 PM (GMT -7)   
(((((((((Barb)))))))))) I'm so sorry and I wish there was something I could do for you. I'm so sad that this disease had made you and others here so very sick. You are always in my prayers. Thank you for checking in - I have been thinking about you and wondering how you've been.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; UC 2008; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



Serina
Regular Member


Date Joined Aug 2008
Total Posts : 431
   Posted 10/9/2008 9:15 AM (GMT -7)   

Hey Barb,

I am new and can't say much, because I don't know much.  I am really sorry though that these things are so bad for you, and I apologize for taking so long to respond.

Many prayers sent your way

Hester


Lupus diagnosed 1996, Heart by-pass 1998, breast cancer 2000, stroke2002, vascular surgery 2005, heart attack in 2007, and had a stint put in, Sjogren's Syndrome 2008
 
******
aspirin, multivitamin, Arthrotec , Meclazine ,  plaquinil, Metoclopomide, Doxepin , Metoprolol, synthroid,  Amlodipine, Crestor, Lasinopril, Plavix, phenagrin,  Restasis  


Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 10/9/2008 11:13 AM (GMT -7)   
Hi Stacie, Navy, Hippi, and Hester:

Thanks for the hugs and well wishes all. I'm still not feeling to well and I awoke to both of my cheeks are broken out in a red rash. I'm not sure what to make of them and my Internist is away for the rest of the week and weekend. I guess I'm gonna have to call my Rheumy. I might take a photo of my face and maybe send it to his clinic.

Hester, I want to apologize that I didn't welcome your sooner to the forum. I was away for a bit and taking a breather. I know that you've been having a hard time and are learning many new things from the members here. Everyone here is so great and caring. I've been a member here a long time and I've learned many ways to cope with this terrible disease.

Just to offer up some info about me, so you'll know me better. I'm 43 and married 23 yrs. I have a daughter that's 15 almost 16. I've had lupus for 21 yrs and yes, it took my dr's 14 years to officially call it lupus. My lupus has been very bad and I've taken every medication except for Arava and Gold. I had some bad luck and I developed blood cancer which is looking like it's turning into full blown leukemia from one of the meds I took to treat my lupus. I have to say everyday is a huge struggle for me and a lot of times I truly want to give up, but I know my job isn't done with my daughter yet. I'm waiting for the day that my oncologist calls me and says I've got a donor and it's time to do my bone marrow transplant. Anyway, that's all about me and I read your post and I'll try to respond more often.

Hope you all are having a good day or at least the best it can be. I love you all and I'm so so happy I have you all in my life.

Hugs,
Barb
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, RA,MDS (Blood Cancer). Tons of meds.


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7018
   Posted 10/9/2008 11:28 AM (GMT -7)   
Hi Barb,

Sorry you've got a rash on top of everything else. I hate that darn lupus rash, especially if I have to go out and mingle with the world! Hope it calms down soon.

(((Barb)))

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Prednisone(was 15mg, now 8mg), Cellcept, Xanax, Trazodone, Boniva(3mth shot), Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


Serina
Regular Member


Date Joined Aug 2008
Total Posts : 431
   Posted 10/9/2008 1:18 PM (GMT -7)   
waiting for the day that my oncologist calls me and says I've got a donor and it's time to do my bone marrow transplant. Anyway, that's all about me and I read your post and I'll try to respond more often.
 
Hey Barbara Lee,
you have a lot to think about and worry about it seems to me.  do not worry about responding to me more, or reading my posts.  It would seem to be a good thing if you conserve your energy for much more important things.
 
blood cancer, your daughter not yet grown, bone marrow transplant.  these are heavy issues to deal with on a daily basis.  you are doing really well to be carrying so much burden.  I don't know that I would be as good at it as you seem to be.
 
Hope this day finds a reason to make you smile
Hester
Lupus diagnosed 1996, Heart by-pass 1998, breast cancer 2000, stroke2002, vascular surgery 2005, heart attack in 2007, and had a stint put in, Sjogren's Syndrome 2008
 
******
aspirin, multivitamin, Arthrotec , Meclazine ,  plaquinil, Metoclopomide, Doxepin , Metoprolol, synthroid,  Amlodipine, Crestor, Lasinopril, Plavix, phenagrin,  Restasis  


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 10/10/2008 12:10 AM (GMT -7)   
Hi Barb, I guess we kept missing each other on the phone the past couple of days. I'm sorry about the mix up with your dr. I'll give you a call tomorrow. Hopfully I will get some sleep tonight and not be a zombie tomorrow.
love and prayers hun
carol
 
Possible scleroderma.  stage 4 COPD, sleep apnea, Osteoporosis,osteoarthritis
Prednisone,plaquanil400mg,azythromyacin,vicodin 4x5mg,Evista60mg, Effexor 150mg,Xanax 1.0 x3,Singular,nitro spray, spirivia,aciphex,lasix,inderal,pot.chlor.,B12 
 Did you ever know that your my hero?
 
 


Julia Hill
Veteran Member


Date Joined Mar 2008
Total Posts : 543
   Posted 10/11/2008 11:31 AM (GMT -7)   

Barb,

(((Hugs)))!  I had no idea that you were feeling this poorly.  When we spoke I guess you were sugar coating it so I wouldn't worry about you along with everything else.  How are things now?  Any word on your red blood cells?  I will phone you over the weekend.  Take care my friend, and please stop worrying about everyone else and focus on yourself and getting well. 

Love Julia

 


Audrey Ann
Veteran Member


Date Joined Jul 2005
Total Posts : 815
   Posted 10/13/2008 7:12 PM (GMT -7)   
Barb,

I am so sorry for the serious problems with your health that you must now deal with. I will keep you in my prayers. Can you feel those prayers coming your way?

Love ya!
Prayers,
Audrey Ann
 
Lupus, RA, and (Maybe) Fibromyalgia and LOTS of Medications!
 


 


Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 10/15/2008 9:55 AM (GMT -7)   
Hi All:

UGH!!!!! I feel terrible. I started feeling poorly over the weekend and I've only continued to worsen. Last night at 2am my temp was up to 102. I've got terrible body aches and I just feel rotten. I've put a call into my Dr. but she's give 72 hrs to return my call. My temp is down today to 100.5 but I still feel rotten. I'm just so fed up with all this. I want to pack my bags and run away from my life of pills and more pills.

I've cut my steroids back per my Rheumy and I'm certain that's part of my problem. My CRP is now 4 times what it should be and my SED Rate is up to 85. Sigh, I'm just so so sick of being sick. Please remind me that I need to hang on. That I need to continue to fight and fight hard. For the way I'm feeling today and just ready to crawl into a ball and just die.

I'm hoping that you are all feeling better than I am. I know I'm not posting a whole lot, but honestly I just don't feel up to it. Heck, I'm not reading my books these days. I'm going to open the front door and maybe enjoy some of the Indian Summer weather we're having. I hope you are all having a good day and I'm so thankful I have you all to turn to.

Hugs,
Barb
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, RA,MDS (Blood Cancer). Tons of meds.


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 10/15/2008 10:24 AM (GMT -7)   

Barb,

I understand how you feel right now. I am not feeling very hot myself. I will say this, as I recall you have at least one child- my brain doesn't work right so you may not or may have more- and a husband who love and need you. For their sakes you need to fight as long as you can. I know with cancer at some point you either need a remission or permission to let go but you asked to be reminded why you need to keep going so that is what I plan to do here. Having you around, no matter how sick is infinately better for your loved ones than you being gone. I know from experience. My grandpa died from cancer and for his sake I was relieved but the truth is had he been able to fight for longer I would have been more than happy. He decided to give up after 6 months of treatment. It destroyed me, he was the closest thing I had to a father and his dying was a huge blow. His wife took it hard too. We all wished he had been strong enough metally to keep fighting.

Now I know darned good and well that despite your down days you are very strong mentally. So fight as long as you can and as long as there is reason to. If the doctors ever say that fighting is no longer something you should do from a medical stand point- as in we want to make you as comfortable as possible for what time you have left kind of talk then you can consider packing the medication in. Until that day comes and you decide to lay down and give up then you have to keep fighting. Your family will be greatful when the time comes that they do lose you for every second your fighting buys them with you.

I hope this helps.


Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 10/15/2008 10:57 AM (GMT -7)   
Barb sweetie, you do need to hang on. No just for your family and for us, but for yourself. Give the doctors a chance. I hate to hear that you're so sick with fever and rash. I've been offline since we've moved and just got hooked up today so I've been MIA for a while. That doesn't mean I don't think about you.

Got to run but will post later.

Miss ya,

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

prednisone, cellcept, plaquenil, celebrex, neurontin, synthroid, triamterene, ultram, actonel, tri-est, imitrex, cymbalta, tricor, acifex, multivitamin, calcium w vit D, fish oil, aspirin


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 10/15/2008 12:55 PM (GMT -7)   
(((((((( Barbara ))))))))

Of course you are sick of the med buffet. Ugh!! *sigh* I just wish you had doctors that you had more confidence in. I just hate it that our military families aren't getting better health care. I know some are getting great care. My brothers' doctors are Cleveland VA Hospital and they seem to get good care there with some complicated issues. One brother is gone now . . . but the other is at the VA hospital several times a month for doctor visits etc. They've been really attentive there.

I just wish you were getting better care. Hang in there sweetie . . . I think those docs come and go. . . a better one could be yours tomorrow. Use your limited energy to make really good notes to take with you to your appointments. Allow your voice to be heard through your typed Doctor lists. Be very specific about what you want out of each visit. Don't be a door mat and don't be a victim.

I hope you feel better soon.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator

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