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MsKait
New Member


Date Joined Feb 2006
Total Posts : 7
   Posted 2/17/2006 10:24 AM (GMT -7)   
Hi I've just signed up to this community and am in search of support. I just need people to talk to. I feel so crappy these days that my emotions are pinging all over the place. I have been diagnosed since 98 but haven't had any symptoms until about 3 months ago. Now I feel just wretched!! Would like to have someone, to just be able to talk about all this with. I'm going to be starting treatment in the spring. Anytime from mid April on. My Doc is away in Japan at the moment. My next appt. isn't until April 18th. So anyone willing to talk with me would be appreciated. Thx.

lerie
Veteran Member


Date Joined Nov 2005
Total Posts : 966
   Posted 2/17/2006 12:03 PM (GMT -7)   
Hi MsKait,Welcometo HW hepatitis forum. Glad you found us! You will get a lot of support here. There are a lot of people here that have various liver disease or are our valuable caregivers But the bottom line is regardless of cuse of disease we all have it here or closly dealing with those of us who have it. You'll be glad you found us & when we all support each other we'll be glad you found us. In addition to your own post here we invite you to go thru these other posts here & join in & talk to us. I noticed you came into our chat last night where we are always happy to see you. again just jump right in & join the coversations OK. Start talking , we're listening. God Bless. later....

PS. I'm a severe advanced cirrhosis patient(prescription drugs)


"There is at least one good thing in each and every day we just have to find it and if we look hard enough we will.Somedays we just have to look a little harder than others,but its alway's there."
 
 
lerie

Post Edited (lerie) : 2/17/2006 7:04:26 PM (GMT-7)


TDT
Regular Member


Date Joined Jan 2006
Total Posts : 402
   Posted 2/17/2006 3:47 PM (GMT -7)   
Hello MSkait,
Welcome to the forum. I am my husbands caregiver, he has cirrhosis,HepC and Liver cancer. Though I don't have it, I do deal with it everyday. Being ill or having a loved one being ill can make us very emotional. This forum has been very helpful and informational. It has really helped me. Bless you.
HUGS!!!
Teresa
 
PS:was unable to e-mail you!!

Post Edited (TDT) : 2/17/2006 3:51:13 PM (GMT-7)


Barbara P
Regular Member


Date Joined Feb 2006
Total Posts : 256
   Posted 2/17/2006 6:19 PM (GMT -7)   

Hi and welcome to the forum,

I'm also caregiver for my beloved husband, Gene who has cirrhosis and esophageal cancer. Life has been a rollercoaster but just knowing we are not alone has been beneficial beyond words.

This is a safe place to be. Everyone is loving and supportive and we are not critical. Sometimes it's just nice to have a virtual shoulder to cry on. Other times, there is wonderful advice and information. This is the group that nobody choses to belong to but we all appreciate it beyond words.

Big hugs,

Barb


                     LIVE IN THE MOMENT!
 
                          Hugs and Prayers
                                     Barb
 
 
 
 


MsKait
New Member


Date Joined Feb 2006
Total Posts : 7
   Posted 2/17/2006 8:10 PM (GMT -7)   
lerie, Teresa and Barb, thanks so much for your response. Already I feel welcomed here. I've never belonged to a chat community before so finding my way around here is a tad perplexing but I'm sure I'll do fine. Many hands make light work. Yes lerie I found the chat room last night and was welcomed there as well. I can't tell you how comforting this is to me. It rather alleviates the isolation doesn't it. You know although my doc thinks I contracted this through my work ( long term care facility for the past 25 yrs) its amazing how people respond to you when you tell them you have hep c... its like you're a lepper or something. They almost physically recoil. I was quite stunned when I experienced that. It never occured to me that people would feel like that. So now I am very selective who I tell. Its bad enough that you HAVE it, then to be treated like that.... oh well, its a spiritual journey right? Anyways, now I'm rambling. I look forward to a sincere and caring relationship with you all. Thanks for being here... Namaste, Kathryn


Marg57
Regular Member


Date Joined Dec 2005
Total Posts : 446
   Posted 2/17/2006 8:39 PM (GMT -7)   

Welcome MsKait, 

I have cirrhosis caused by autoimmune hepatitis.  People assume wrongly that all liver disease is caused by alcohol or drug abuse.  Like you, I am selective in whom I tell about my disease.  You will find the forum members very compassionate and helpful.  I always feel better after visiting the forum.  There is always someone worse off than yourself and it puts things into perspective. (for me anyway)

Talk to you again soon.

Marg


MsKait
New Member


Date Joined Feb 2006
Total Posts : 7
   Posted 2/17/2006 9:30 PM (GMT -7)   
Thanks for your welcome Jennifer and also for your post Marg. I can't get over how receptive everyone is here. Its a god send for sure thx. I was just in the chat room and had a fun time. Its so good to laugh for a change. It kinda takes you out of yourself for awhile I think. I sure hear what you're saying Marg. I hold my cards close to my chest where this is concerned now. I refuse to be judged in this. The irony of it is that I contracted it in the course of caring for others... Its like a double whammy isn't it Marg. But we will persevere... thx again, Kathryn

lerie
Veteran Member


Date Joined Nov 2005
Total Posts : 966
   Posted 2/17/2006 9:35 PM (GMT -7)   
Hi MsKait, expressing ones feelings , reaching out for support or venting is not rambling. I f it is then i too am guily of this. I know all to well what you mean by being isolated for various reasons with liver disease. I do not have Hep C & I am still severly judged for my condition. Being a healthcare worker puts you at great risk. So do accidents of any type that risks blood to blood. mine was thru a docter misdiagnosing me but still the things I hear from people. I don't care if someone is 100% responsible just like in any other area of life everyone deserves a second chance.You should not be made to feel ashamed for your accidental exposure in your line of work. I think you'll find there is no judgements in this forum regardless of cause. Only love, support & a very special understanding, respect & acceptance for liver disease here. Anyway you will soon find this out. My thoughts & prayers are withyou. later....
"There is at least one good thing in each and every day we just have to find it and if we look hard enough we will.Somedays we just have to look a little harder than others,but its alway's there."
 
 
lerie


TDT
Regular Member


Date Joined Jan 2006
Total Posts : 402
   Posted 2/17/2006 10:33 PM (GMT -7)   
Hello Kathryn,
I have been a nurse for a long time, and what does get me are the attitudes of a lot of healthcare workers. I have seen them make unjust judgement, on patients and their families. So I have also been selective about who I confide in also. I have found this forum to be a safe place, to confide, vent, and also learn. We are all going through different stages here, and it is like you said a spiritual journey. I have gotten so much support here, which has strenghten my faith. I hope you find the same as I have. Bless You!!!! HUGS!!!

Teresa

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 2/18/2006 7:39 AM (GMT -7)   

Kathryn, welcome to the forum!  We are a close-knit group and always are grateful to have new members.

I was diagnosed with hep C in '93.  I knew nothing about it at the time--in fact, a test for it only became available the prior year.  I worked in the medical field as a transcriptionist for 15 years, and at the time thought nothing of mentioning the hep C to a few nurses.  I thought it would be a good source of info.  I experienced exactly what you did--the actual pulling back physically from me, the feeling of ostracism, etc.  I learned not to divulge my diagnosis unless it was necessary; i.e., to doctors and other healthcare workers, etc.  When I divulged it to my dentist's office, I was treated so poorly that I never mentioned it again to any dentist.  (My feeling is the likelihood of getting or transmitting the disease to a dentist is practically nil, being that they practice contagious disease protocol.)  When you tell someone you have hep C, they immediately ask, "How did you get it?"  In my case, I know I contracted it during an 18-month period in the 60s when I was using IV drugs (have been clean since '69, so it's a lifetime away.)  That's a period of my life that I have worked hard to overcome and get past, and I don't particularly want to disclose it to just anybody.

At any rate, Kathryn, have you had a liver biopsy yet?  That is the definitive way to determine if your hep C is active; that is, still attacking your liver.  If so, I hope you will get started with treatment as soon as you can (when your doctor gets back.)  It didn't work for me, but I was considering trying the combo treatment when I was diagnosed with inoperable liver cancer--a huge tumor that has metastasized to a large blood vessel.  I am just waiting for a new treatment to start, as it is the only thing that might help me gain some time.  I mention this so you will know how important it is to get treatment.  This tumor is a direct result of the hep C going untreated for many years.  Chemo does not work for liver cancer!  nono   

Kathryn, what kind of symptoms are you having?  My main one is extreme fatigue...sleeping a lot, but still not feeling rested.  Someone once described it as walking through molasses, and I think that really says it!  eyes   The feeling of fatigue...though much milder than now...was what caused my doctor to test me for hep C.  I also had elevated enzymes, but they have never been more than double normal until lately.  I also have some liver pain and bloating now, as well as severe lower extremity swelling.

This forum is a great place to vent and get support, meet others with the same problems, etc.  There are also some other resources for you to check into at the top of the Healing Well/hepatitis page.

Hope to see you back here often!  :-)

Connie


MsKait
New Member


Date Joined Feb 2006
Total Posts : 7
   Posted 2/18/2006 10:44 AM (GMT -7)   
Thanks for your response to me Connie. Now as I sit typing this the tears are free flowing down my face. I guess I've been holding myself in such tight control for the best part of the last 3 months... didn't go to my doc until about 3 weeks ago and that was only because he had the receptionist call me to come see him. There was so much going on that I just kept pushing it to the back burner. I was working afternoons (which I've done for 25 odd yrs now) then last fall I decided to upgrade my education because I had never gotten my grade 12 and needed it to pursue training in something else. So I was going to school during the days from 10-2:30 then leaving school and going directly to work 3-11. Monday-Thursdays. In the middle of all of this I was moving so I was packing in between times. Jan 17 was moving day which went okay. But after we finished moving, my car died. So there I was in my new apartment with no car. Something I hadn't been without for a very long time. I looked around my new home, (a bachelor apt.) at the monumental task of unpacking and organizing. I just hit a wall!! I sat down in the only chair that wasn't toppling over with stuff piled high on it and have found it nigh on impossible to move ever since. Every day is a struggle. When you mentioned fatigue in your post to me Connie, something happened inside me and all of a sudden the tears just started to pour out. I have always taken care of myself and been able to manage. Work, pay my bills and deal with whatever was put in front of me. Not being able to organize myself here has taken its toll I guess. Later today my mother and sister are coming over to help me. Mom lives in a city thats a 2 hour drive away. I guess I haven't been willing to acknowledge the part of this that screams at me... "Chronic Disease". To complicate things, when I got my bloodwork back I was informed that my liver function numbers were three times the normal and my liver cells are dying off. My diabetes came back with high levels of proteins in my urine and I now have high blood pressure. I have been feeling nauseous and having these headaches for the past two months and ignoring them. As well as having a very uncomfortable buzzing feeling underneath my skin, affecting my entire body. This I understand is from the diabetes and high blood pressure. My doctor, bless his heart, said to me "whatever I can do, however I can support you, I am willing to do whatever I can. I nearly started crying at that point. I guess Connie, I am just flat out confused. What symptoms belong to what!! Overwhelmed is another word. This almost completely debilitating fatigue is the worst of it though. Some days I get out for a walk and some days the tiredness and nausea keep me housebound. So (I say this with great emotion) finding you here and this community is a divine appt... phewph, this has felt like a purge. I acknowledge and appreciate the honesty and intimacy that some of you have shared with me. It allows and encourages me to do the same. Thanks and blessings to all. Kathryn

MsKait
New Member


Date Joined Feb 2006
Total Posts : 7
   Posted 2/18/2006 10:53 AM (GMT -7)   
P.S. Connie, No I haven't had a biopsy yet. My specialist has told me I am a strong candidate for the interferon "cocktail" treatment. That I would be on it for about 6 months and almost virtually cured when done. He told me that whenever I was ready to begin the treatment to just make an appt. and he'd get the ball rolling. So I imagine when he returns from Japan, thats what will happen. Thats in April... hugs, Kathryn


Barbara P
Regular Member


Date Joined Feb 2006
Total Posts : 256
   Posted 2/18/2006 11:17 AM (GMT -7)   

My dear Kathryn,

You have been through so much and being on your own has got to be even more stressful. Let the tears flow; that always helps. My heart goes out to you.

Being unable to sort out what symptoms result from which medical or emotional condition is frustrating. Things are probably all intertwined by this time. As one illness is staballized, it will help the others as well.

It sounds like you've got a great doctor and that is very important. We need to trust our medical specialists. What is being done now to bring your high blood pressure and diabetis under control again?

It sounds like the move together with going back to school put you over the edge. Once that intense fatique takes over, it can be overwhelming. Now I'm speaking from the caregiver side of the road but it breaks my heart to see my husband under similar conditions. And I experience fatigue related to emotional exhaustion and depression. I can only imagine what having elevated liver enzymes and diabetis would make me feel like on top of what I already deal with. So my heart goes out to you also.

I believe divine intervention has directed us all to this wonderful site. Although none of us know what tomorrow will bring, today is more bearable because of the interconnecton and love between each and every one who posts or reads the posts.

Love, hugs and healing energy,

Barb


                     LIVE IN THE MOMENT!
 
                          Hugs and Prayers
                                     Barb
 
 
 
 


lerie
Veteran Member


Date Joined Nov 2005
Total Posts : 966
   Posted 2/18/2006 11:37 AM (GMT -7)   
Hi kathrine. we all know here about the fatigue,nausea housebound & all the rest of it in this rollercoaster ride liver disease has us on. let those tears flows honey, they cleanse the soul & give us release. Do you have cirrhosis fro your Hep C ? I'm glad you have help getting organized there I know how difficult it is to do all this all your own now. It is really frustrating when we are no longer in cotrol as we once were with our lives as we once were.Talk about your symptoms , feelings & frustrations to let it all out. we are here to help you get thru this & support you. We also welcome exchange of ideas to one another to help all get thru this in every area, as you have probably noticed as you whent thru everyones posts here.
"There is at least one good thing in each and every day we just have to find it and if we look hard enough we will.Somedays we just have to look a little harder than others,but its alway's there."
 
 
lerie


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 2/18/2006 1:36 PM (GMT -7)   
Kathryn, I am glad to have been able to offer some help to you, and enable you to experience your feelings. Crying can be a release...one that you seemed to need. I'm sure you will find that everyone here can offer you help in some way. I can relate to the change in your life, the loss of control. I have always been very independent and self-supporting. How on earth you were able to take on school in addition to working is amazing to me. And moving is a huge chore, even for a healthy person. I am so glad you are getting some help with unpacking and getting organized in the new place. I live alone and am on the 2nd floor...both out of choice. It's funny to me when people glibly say I should move to a first-floor apt. Just the THOUGHT of packing exhausts me! I much prefer living on the 2nd floor for a number of reasons, and will do so as long as physically possible.

Have you applied for Soc. Security Disability? Although it took me over 2 years to be approved (based on avascular necrosis/hip replacements and problems with same, plus the hep C fatigue...cancer had not yet been diagnosed), I finally did get it in July and was able to quit work. The Disability check has been such a blessing to me. I was working fewer and fewer hours and it was a real struggle. It took a couple of months to get accustomed to the idea of not working, as I've worked all my life (I'll be 63 next month), but now I am just thankful to have a monthly income without having to work. They also gave me a bulk sum amount for the 2 years I was waiting to be approved, so that is a huge help. In addition, I now have Medicare and Medicaid. I am able to have someone here to clean, get groceries, do my laundry, etc., twice a week. I know that stress is not good for anyone, and especially not for those with chronic illnesses, so I try to make things easier.

Certainly your diabetes is a complication and you will need to keep that under control, as well as your BP. Your doctor sounds wonderful. Is he an endocrinologist or primary care doc? You should be seen by a hepatologist or at least a GI doc, for input prior to starting any treatment. You will definitely have a liver biopsy prior to any treatment.

I'm not familiar with the "cocktail," but I do know that the combo treatment takes a year and generally has bad side effects. Make a list of questions you want to ask when your doctor gets back.

Meanwhile, we are all here for you. You are no longer alone in this.

Hugs,
Connie

Post Edited (hep93) : 2/23/2006 5:17:48 PM (GMT-7)


III
Regular Member


Date Joined Feb 2006
Total Posts : 91
   Posted 2/21/2006 7:10 PM (GMT -7)   
Hi Kathryn, I'm new to this too, but I'm really happy I found these good people. I was also told 6 months. I'm type 2B no biopsy yet. What type are you?????I'm just so happy that I finally know what I have....I've been tested from head to toe because of fatique, headaches, arthitis. They found a cyst in my brain....which they are keeping an eye on.....The last 5 years I noticed my body slowing down and thats not me and I'm 47 not that old....I asked my doc what these red marks were on the back of my arms and my back he asked me did you ever drink I said yes a long time ago and thats when he decided to do the hep test. I was also told for the last 10 years my alt is elevated and it was probably from my meds.....

I have never read so much in my life time!!!!!
Why isn't this out in the public if so many people have it???

PN16
Regular Member


Date Joined Oct 2005
Total Posts : 98
   Posted 2/21/2006 7:28 PM (GMT -7)   

Kathryn,

Welcome - I (along with my husband) am my father's caregiver - My Dad has cirrosis (from alcohol) - he was very ill and my family and I were taking care of him - he has bounced back quite well and we are home but still keeping a watchful eye.  This is a great place to chat and share info and even give out about your bad day - everyone is so supportive.

Sending you good thoughts today:)

Patty


Barbara P
Regular Member


Date Joined Feb 2006
Total Posts : 256
   Posted 2/22/2006 10:04 AM (GMT -7)   

Hi,

It's unfortunate that the medical profession isn't more up to date on liver disease and its early symptoms. Elevated liver enzymes should never be ignored even when due to medications.

My husband has end stage liver disease now because his doctors always sluffed off his subtle complaints such as fatigue after eating a small bag of potato chips even when young, getting sick repeatedly for no apparant reason and getting deathly ill whenever he caught the flu. When Gene told his Doctor he had started drinking in his mid sixties, the doctor said as long as he didn't drink first thing in the morning, it wasn't a problem. Well, it was; a few years later Gene's liver was irreversably damaged. Had his Hepatitis A been identified earlier and his poor liver function uncovered, Gene would never have abused his liver with alcohol, Tylanol, etc.

Even now the medical specialists he sees occasionally, as everyone has long since given up on doing anything to help him,  don't know what complaints are liver related, which ones are related to his cancer and which ones are caused by other factors.

We have learned more about liver function in our short time on the forum than in the almost three years we have been struggling alone. Bless everyone of you.

Love to all,

Barb


                     LIVE IN THE MOMENT!
 
                          Hugs and Prayers
                                     Barb
 
 
 
 


MsKait
New Member


Date Joined Feb 2006
Total Posts : 7
   Posted 2/27/2006 8:34 PM (GMT -7)   
Hi Everyone!!! So sorry its taken me so long to respond to y'all but my computer croaked... (better it than me eh 's') But it has left me feeling rather adrift. Hopefully I will be able to replace it soon. I only need the tower. But we will see... So in the interim, its internet cafe's for me. I wanted to comment on the wonderful responses you all wrote after my very teary day. It was so nice coming online this evening and reading them all. I already feel such an affinity for everyone. Indeed our struggles are the same aren't they. I don't need to apply for ss just yet as I am still in the early stages of this vile thing. I do still work and in fact am applying for a full time day position because my ltd (long term disability) when the time comes, will be based on my earnings for the previous six months. So I want to be able to receive as much as possible for income. I have type 2 hep c... not sure about the rest. As so many of you have experienced with this, and commented on, the fatigue is the worst. That absolute exhaustion at a core level is right... and coming back from that has been such a challenge!! This is the first time I have experienced anything like it to this degree. Today isn't so bad though. I have been out and about doing chores and errands and now here with you guys... Life today is not so bad. Tomorrow is my first day back to work after having 3 off. I'm hoping my energies will remain as today. I really must take notes when I read everyones posts so I can comment on the things that are especially poignant to me and recall who it was who said them. Anyways I'm very happy to be here, and this place isn't far from home. Just a short walk I've discovered, so I can pop in periodically to see how everyone is doing. Thankyou all for being here... Love and hugs, Kathryn

lerie
Veteran Member


Date Joined Nov 2005
Total Posts : 966
   Posted 2/27/2006 11:12 PM (GMT -7)   
Hi Kathryn your right better the computor than youlol. I hope to you can replace it soon. I'd be lost now without mine & isolated again.The internet cafe is a good option, gets you out of the house to besides work too.Why was it a very teary day Kathrine? Talk to us that's why were here. Yes are struggles are the same. , regardless of stage. I agree the fatigue is the worse & loss of independance. Does your hepatologist know your still working? It is all a rollercoaster ride, good days bad days nothing in between so to speak. I hope your good spell last for awhile. I'm glad your not far from home there. we miss you when we don't hear from you. I hope you know this.I hope you get to pop in often as you possibly can. it is always so nice to hear from you. Have you gone thru the other posts yet to join in the great coversations? Well take care & please don't over do. What stage are you in? Has cirrhosis started. Rest as often as you can & please don't allow yourself to get run down. It seems what we lose in strength & endurance we never get back. Hope to talk to you soon in these posts. My thoughts & prayers are with you.later....
"There is at least one good thing in each and every day we just have to find it and if we look hard enough we will.Somedays we just have to look a little harder than others,but its alway's there.
 
Valerie


lerie
Veteran Member


Date Joined Nov 2005
Total Posts : 966
   Posted 2/27/2006 11:18 PM (GMT -7)   
Hi Kathrine just wanted to tell you there are posts here about peoples judgements & comments about liver disease. I believe the thread is tittled How others react to liver disease.. I hope you'll read it & unload these comments & attitudes of others. Don't carry them inside. You'll see in this post what we all have gone thu in this area as well. God Bless. later.....


"There is at least one good thing in each and every day we just have to find it and if we look hard enough we will.Somedays we just have to look a little harder than others,but its alway's there.
 
Valerie


TDT
Regular Member


Date Joined Jan 2006
Total Posts : 402
   Posted 2/28/2006 8:48 AM (GMT -7)   
Hi Kathryn,
It is good to hear you are feeling a bit better. We all have our teary days. It is a roller coaster full of emotions. We are all here for each other, which does help. We are safe to say what we feel, and no longer feel isolated whether it is homebound or society isolating us. Take it easy, try not to over do it!!! HUGS and Prayers!!!

Teresa

lerie
Veteran Member


Date Joined Nov 2005
Total Posts : 966
   Posted 2/28/2006 10:26 AM (GMT -7)   
Hi Teresa, Very well put my dear & you speak for all of us!My thoughts & prayers are with you always. later....
"There is at least one good thing in each and every day we just have to find it and if we look hard enough we will.Somedays we just have to look a little harder than others,but its alway's there.
 
Valerie


Peaceful Harpist
Veteran Member


Date Joined Apr 2005
Total Posts : 679
   Posted 3/4/2006 6:38 AM (GMT -7)   
Hi Kathryn, welcome! I am new here too. I am in the process of being diagnosed. Last week I was told that I have cirrosis and hepatitus. Other than that, I don't know what kind I have, hepatitus that is. I have tests pending so hopefully I will learn more soon. This is a great forum and a true blessing. I have learned a great deal since I have joined. I no longer feel the isolation. I have been given a warm welcome and tons of caring support. Take it slow. Don't exhaust yourself with unpacking. Take one box at at time, and if you find that you can't tackle that box, make lists to coordinate what you would like to do. Don't forget to put "rest" and "take care of myself" on the top. Tears are a good release. I know I always feel better after a good cry. It takes too much energy to hold them and the emotions related back. I hope that you'll have a good day. (((hugs))) and prayers for you.
                 Blessings and hugs, love, Cynthia 
 
"I have found the paradox that if I love until it hurts, then there is no more pain, only love." Blessed Mother Theresa
 
                                                          
 


lerie
Veteran Member


Date Joined Nov 2005
Total Posts : 966
   Posted 3/4/2006 8:45 AM (GMT -7)   
Hi Cynthia Great Advice!

Hi Kathrine, hope all is going well with you. My thoughts & prayers are with you all. later...
"There is at least one good thing in each and every day we just have to find it and if we look hard enough we will.Somedays we just have to look a little harder than others,but its alway's there.
 
Valerie

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