Echocardiogram came back - Mitral valve sclerosis - What is this?

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CNSKris
Regular Member


Date Joined May 2006
Total Posts : 236
   Posted 8/20/2007 10:34 AM (GMT -7)   
 
Does anyone have or has heard of mitral valve sclerosis?  From what I can tell it is rheumatic heart disease.  I never had rheumatic fever, but read it could be from SLE or Scleroderma also.  I was diagnosed with mild mitral valve prolapse and regurgitation a year and a half ago.  But now it came back mitral valve prolapse and mitral sclerosis (no regurgitation this time).  I am concerned that this is a relatively short span of time and don't know how fast it progresses. 
 
I also went to the Nephrologist but she didn't have my records so I need to go back.  I thought it was strange that she stated she would give me the medicine then and there but needed proof that I had high ANAs first.  What medicine?  How would she know what is wrong with my kidney(s) just by a low GFR and high Creatine rating?  Shouldn't they do a biopsy or more testing.  The other concern I had was that I have moderate IgM autoantibodies and that would make a different diagnosis from the regular gloumeronephritis.  She may give me the wrong medication.  When I go back, I will explain it to her again.  These doctors really worry me sometimes.  I couldn't believe my PCP sent me to her with no information but one urine test.  So now I have to bring my "portfolio" with me next time.
 
Does anyone know if my kidney problems will affect a valve transplant/surgery in the future?  At least we are getting somewheres, but I just have more questions now than before.  It sounds kind of serious.  I wonder if they will blow this off like everything else I went through.  Thanks for lending me your ears and I appreciate your thoughts - Here we go again - Kristin 
 
  Dx:  Lupus CNS 11/2005; Current - kidney disease, enlarged heart, MVP/regurg, dementia; GERD; vision loss, narcolepsy, rheumatic arthritis, IBS, ovarian cysts, raynauds, EBV/CFS, inflam. liver/spleen. Rx:  Atenolol, Aricept, Flexeril, Motrin  Previous-rashes, hemi-pelagic migraine, sensory loss, amnesia, PTSD/Dep., host of neuro problems, pregnancy compl., False pos. syphilis, fine speck & homogen ANA; IgM; staph/strept infections, colonitis, pancreaitis, gastritis, costochondritis, pericarditis, Hashimoto's, dyspnea, hyper/hypotension, lipedemia, ulcers, pneumonia, anemia, Scleroderma symptoms, vein swelling, etc.  
 
 


hippimom2
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Date Joined Jul 2005
Total Posts : 5403
   Posted 8/20/2007 11:09 AM (GMT -7)   
Oh gosh, Kristin, I'm really sorry about the news you got about your heart. I don't know anything about the conditions you mentioned, but I'm really hoping the cardiologist follows up with you soon and explains things clearly to you and can start some kind of treatment to hopefully stop any progression of the sclerosis.

Now, onto the nephrologist - I'm very frustrated for you about that whole thing. You are right that all of the labs related to your kidneys should have been sent to the nephrologist - your time and the doctor's time was wasted. I agree with you about getting a biopsy done to determine a diagnosis. I had some mild kidney involvement over a year ago and the nephrologist I saw said that if the problems continued or if I ever had blood in my urine then a biopsy would be done. My understanding is that a biopsy is the best way for them to determine more precisely what is going on. I just hope they are not trying to cut corners because you don't have insurance. I'm glad you are going to go back armed with all of your labs and also all of your questions.

I hope it doesn't take too long to get the answers you need and also to get the treatment you need. Do you know when you see the nephrologist again?

Hang in there and keep us updated. ((((Hugs))))
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

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CNSKris
Regular Member


Date Joined May 2006
Total Posts : 236
   Posted 8/20/2007 11:55 AM (GMT -7)   
Thanks Hippi, your concern means a lot. A little scared right now. Called the nephrologist several times and they keep saying they will call back with an appointment but no answer yet. It has been a week now. Don't know what that means. I will try again mid-week. I don't want to get to the point of frustration where I flip out on them. Trying to maintain my cool with all this. My personal life has been in an uproar this week also, so it isn't the best timing to mess with me. That Leo in me is about to come out. Need all the hugs I can get - thank you - Kristin
 
  Dx:  Lupus CNS 11/2005; Current - kidney disease, enlarged heart, MVP/regurg, dementia; GERD; vision loss, narcolepsy, rheumatic arthritis, IBS, ovarian cysts, raynauds, EBV/CFS, inflam. liver/spleen. Rx:  Atenolol, Aricept, Flexeril, Motrin  Previous-rashes, hemi-pelagic migraine, sensory loss, amnesia, PTSD/Dep., host of neuro problems, pregnancy compl., False pos. syphilis, fine speck & homogen ANA; IgM; staph/strept infections, colonitis, pancreaitis, gastritis, costochondritis, pericarditis, Hashimoto's, dyspnea, hyper/hypotension, lipedemia, ulcers, pneumonia, anemia, Scleroderma symptoms, vein swelling, etc.  
 
 


emmi
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Date Joined Apr 2005
Total Posts : 1529
   Posted 8/20/2007 9:43 PM (GMT -7)   
Hugs to you, Kristin. These doctor offices do not realize how much their lack of respect for the clients/patients by not returning phone calls puts undue stress on us. And stress is the absolute last thing that a person, any person, who has health issues needs!

You can maintain your cool with this. It helps me to make lists...sometimes I even draw boxes. I put all the stuff for each doctor under one heading or in one box, personal stuff in another heading/box, etc. In some way that visual helps me keep it from getting mixed together and therefore getting emotional out proportion.

In regard to your heart, sclerosis means hardening. So it could simply mean that the valve itself is getting stiff. I say this because I have mitral valve regurgitation and the mitral valve is stiffening. Before you get too worked up about it, ask the doctor to explain everything to you.

Same thing with the nephrologist. Make the time until your next appointment work for you; use it to think of all of your questions and write them down. Then rank them in order of importance so you can ask them at the appointment most important first. If you don't get through them all, ask if you can leave the list and call at a later date at their convenience. Don't be afraid to let them know how long you have waited to get some help for this problem so they understand why you have so many questions and why you are so anxious to get some answers.

Good luck, Kristin. Keep us in the loop!

xoxo emmie
</FONT>

SLE, limited scleroderma, Sjogrens, Hashimoto's Thyroiditis, seizure disorder, Raynauds, Hashimoto's (or Autoimmune) Enchephalopathy


CNSKris
Regular Member


Date Joined May 2006
Total Posts : 236
   Posted 8/21/2007 12:52 PM (GMT -7)   
Emmie, thanks. Wrote a letter to the nephrologist with my concerns and important info. along with the requested records. Started working on my "portfolio" gathering all the specific documents for the diagnoses. Not the best entertainment but keeps me focused. As for the heart thing, the report said the valve was thickening. Getting thicker. That is what I saw also on the echocardiogram. It was very thick and barely working. Not sure why they called it mild sclerosis. Also not sure why they didn't address the "white spots" on the myocardium. They were not there a year and a half ago either. But you are right, no sense jumping of the deep end until the cardiologist looks at it. Still want a second opinion though. Didn't look mild, but then again I am no expert. We'll see what happens. I seem to get a little to dramatic with this stuff at times. But then again it is my heart and I want to keep it.

I'll keep ya posted - Hugs - Kristin
 
  Dx:  Lupus CNS 11/2005; Current - kidney disease, enlarged heart, MVP/regurg, dementia; GERD; vision loss, narcolepsy, rheumatic arthritis, IBS, ovarian cysts, raynauds, EBV/CFS, inflam. liver/spleen. Rx:  Atenolol, Aricept, Flexeril, Motrin  Previous-rashes, hemi-pelagic migraine, sensory loss, amnesia, PTSD/Dep., host of neuro problems, pregnancy compl., False pos. syphilis, fine speck & homogen ANA; IgM; staph/strept infections, colonitis, pancreaitis, gastritis, costochondritis, pericarditis, Hashimoto's, dyspnea, hyper/hypotension, lipedemia, ulcers, pneumonia, anemia, Scleroderma symptoms, vein swelling, etc.  
 
 


emmi
Veteran Member


Date Joined Apr 2005
Total Posts : 1529
   Posted 8/21/2007 8:38 PM (GMT -7)   
Kristin,
Thickening is the correct term; I'm sorry for the confusion. (I should know better than to post late at night about something important. I'm very sorry!) That is exactly what is in my report as well.

You are not being dramatic! You want the correct information about what is going on inside your body, what to do about it and when. That's what anyone in their right mind wants to know and do. Be sure to make a note to ask about the "white spots" in question. That's the only way we get answers. Happy info gathering--you're right, that is such fun entertainment and for some reason so stinkin' tiring!

xoxo emmie
</FONT>

SLE, limited scleroderma, Sjogrens, Hashimoto's Thyroiditis, seizure disorder, Raynauds, Hashimoto's (or Autoimmune) Enchephalopathy


CNSKris
Regular Member


Date Joined May 2006
Total Posts : 236
   Posted 8/22/2007 7:27 AM (GMT -7)   
Emmie, I appreciate your checking in. Did your doctor ever say what causes this thickening? How has it affected you and do you need surgery to correct it? From what I read progressive thickening was from rheumatic fever, etc. Not really too much information that I could find on mitral valve thickening/sclerosis. Was hoping to hear a different cause.

I gather since it wasn't there over a year ago, then it is progressive. Not real worried about having surgery but not sure if I have a time-frame to play with this or if it is something that needs to be addressed ASAP. Not sure if I can neglect it for 5-6 months. My daughter is in trauma therapy and I want to get through that before I take on anything major. Surgery or any advanced care will require that I move out of the state and work full-time. Right now I'm having a very hard time just working part-time.

My doctors know little to nothing about lupus from what I can tell. They still think I need all 4 criteria at the same time to qualify for lupus. I have 9 but not at the same time. Usually just 2-3 at once. So even though I was diagnosed by experts 2 years ago, my PCP one day says I have lupus and the next day says I don't (becuase I got better). I can only imagine what answer I would get with this one. It is hard not feeling you can trust doctors. I will need time to save up for a cardiologist. I guess this is where the frustration comes in and the panic. Kind of between a rock and a hard place.

The info. gathering has been quite an eye opener for me. There is a lot I don't remember from when I had the dementia, boy was I a mess. Still without those records, I gather it is asking a lot for the doctors to take a leap of faith and believe me. I'm sure it has nothing to do with me personally, but it feels personal. They just want proof of the nuts and bolts. Can't blame them. However, if I were a doctor I would have gotten the records myself and not put that off on the client. It is just plain lazy on their part and it is very difficult/expensive for me to do.

Thanks for allowing my to air these things out. Hugs - Kristin
 
  Dx:  Lupus CNS 11/2005; Current - kidney disease, enlarged heart, MVP/regurg, dementia; GERD; vision loss, narcolepsy, rheumatic arthritis, IBS, ovarian cysts, raynauds, EBV/CFS, inflam. liver/spleen. Rx:  Atenolol, Aricept, Flexeril, Motrin  Previous-rashes, hemi-pelagic migraine, sensory loss, amnesia, PTSD/Dep., host of neuro problems, pregnancy compl., False pos. syphilis, fine speck & homogen ANA; IgM; staph/strept infections, colonitis, pancreaitis, gastritis, costochondritis, pericarditis, Hashimoto's, dyspnea, hyper/hypotension, lipedemia, ulcers, pneumonia, anemia, Scleroderma symptoms, vein swelling, etc.  
 
 


emmi
Veteran Member


Date Joined Apr 2005
Total Posts : 1529
   Posted 8/22/2007 8:43 PM (GMT -7)   
Hey Kristin,

I'm not sure what causes the thickening of the valve; I've always wondered if it wasn't due to having scleroderma. (I never had rheumatic fever either.) I see that you list sclero symptoms in your signature; what are they? The thickening hasn't hasn't caused me any problems yet. I think it would depend on how much it is affecting the blood flow. I have an echocardiogram every year due to having scleroderma so it is followed then. Hopefully you will be in the same keep an eye on it type thing....I can live with that! It's not life threatening or causing me any symptoms.

I know what you mean aabout the records thing. I've had to do the same with switching doctors and institutions. Some places do not charge you if you have the records sent directly to the new doctor's office. That might be an option if money is getting really tight.

Have you ever taken the diagnostic criteria from the Lupus Foundation website in to your doctor? I know, that might be a little too in your face, but really! Maybe getting these old records will help in that regard. What do you think?

Keep us posted, Kristin. You have so much going on. Every little bit of support helps. Hugs to you and your daughter too. Hope things go well for her.

xoxo emmie
</FONT>

SLE, limited scleroderma, Sjogrens, Hashimoto's Thyroiditis, seizure disorder, Raynauds, Hashimoto's (or Autoimmune) Enchephalopathy


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 8/22/2007 8:56 PM (GMT -7)   
Hi Kris-- sorry to hear about your heart.  I had atrophy of the left side of the heart that was caused by autoimmune disease, atrophy is like a thickening, sort of like scarring, when you develop too much muscle and the heart get big with extra muscle.  It went away but it took at least a year, once my antibodies were under control.  My son had a murmur and I have an irregular heart beat, don't know if its a murmer, but there's some irregularities they worry about and others don't concern them as much for some reason.  I was told to live with my arrhythmia, that it was normal for me.  I hope they go in and rule out atherosclerosis and arteriosclerosis where calcium or cholesterol can block your arteries.  Many women have high cholesterol and they just don't take this seriously in us.  I wish I could take a way this problem, but I do know that a lot of this stuff heals on its own once your immune system is undercontrol or other measures are taken to help it heal.  In my case the immune system went bonkers because I was given lithium, which I CANNOT take.  I didn't get the typical allergic rash on my body or other signs, exceopt extreme sluggishness, so sometimes medicines can cause problems too.  I wish the best for you and would like to know how things come out.

Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
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
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments


CNSKris
Regular Member


Date Joined May 2006
Total Posts : 236
   Posted 8/24/2007 7:38 AM (GMT -7)   
Hi Emmie and Marji: I always love talking with you both. Emmie, I read that rheumatic heart disease/thickening of valves is from the rheumatic fever as well as Lupus and Scleroderma. I am assuming mine is from Lupus. I only had the Scleroderma symptoms for about a year and then it dissappeared. The symptoms were tightening and thickening (scarring) of the skin, weird swelling, tangelicias, and hardening of many ligaments throughout my body. As far as I know I only had skin and ligament problems. The pain of my rheumatism and ligaments were excruciating, I will never forget it. The heart problem is very symptomatic for me. I have trouble breathing, palpitations, tachyardia and pain with exercise and hot weather. I have had exercise intolerance for years so that is my MVP. My protfolio does have the criteria listing on the front page, just in case there is any confusion as to what lupus is. I also have the records sorted by each criteria, as an added bonus. I wish I had gone to the doctors when I got the rashes and I also don't think the PCP wrote down when I had the mouth and nose ulcers. Unfortunately that is out. But I do have records for the other 7 criteria I meet. That should do.

Marj: I do (kind of) wish they would do a cath to check out those white spots for calcium deposits. I already have a problem with these deposits under the skin of my arms and legs. If, the doctors are right and they are actually calcium depositis. I seem to have an overload of the stuff and it just keeps growing, very fast pace lately. I had enough TIAs to know I do not want a major stroke. I have very high cholesterol as it runs in the family on both sides. I think mine started out as an irregular heart beat and now it is a murmur. Wish I knew more about this heart stuff.

Thanks to both of you for putting me at ease. I am starting to calm down now. I guess it is just with all these different stressors going on at the same time, I was starting to spaz. Peace and love to you both - Kristin
 
  Dx:  Lupus CNS 11/2005; Current - kidney disease, enlarged heart, MVP/regurg, dementia; GERD; vision loss, narcolepsy, rheumatic arthritis, IBS, ovarian cysts, raynauds, EBV/CFS, inflam. liver/spleen. Rx:  Atenolol, Aricept, Flexeril, Motrin  Previous-rashes, hemi-pelagic migraine, sensory loss, amnesia, PTSD/Dep., host of neuro problems, pregnancy compl., False pos. syphilis, fine speck & homogen ANA; IgM; staph/strept infections, colonitis, pancreaitis, gastritis, costochondritis, pericarditis, Hashimoto's, dyspnea, hyper/hypotension, lipedemia, ulcers, pneumonia, anemia, Scleroderma symptoms, vein swelling, etc.  
 
 


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 8/24/2007 12:47 PM (GMT -7)   
Hi Kristin--
Thanks for the kind words, I like hearing from you as well. I know what you mean about wanting the testing done. I also have had extremely high cholesterol due to my liver and its been going on for years and have that irregular heart beat, but they claim my valves are alright. I thought there was some medication they can give you to help with calcification, at least arterio and athero sclerosis, and for cholesterol, but I can't take them becuase they are too hard on my liver. I noticed you had an inflamed liver and spleen. Have they given you a diagnosis for that outside of you AI disease? Do they consider this to be NASH (non-alcoholic steatohepatitis)? Did you have fat in your liver? There are some different medicines they can put you on and a very different diet that may help to lower your cholesterol in your case, I don't know. I eat a lot of fats of all kinds, low carb, because my liver doesn't work right. Eating a lot of them actually lowers my cholesterol in my case. I don't recommend this to anyone, especially you with all the heart problems, but if you feel that your regular diet and stuff isn't working and things are just getting worse, you might try getting an ultrasound of the liver to see if there is fat. Also get your insulin checked to see if you might have a metabolic problem. I guess the docs are finding out that Fatty liver is pretty serious and causes as many as 1 in 4 people to get transplants and leads to athero/arteriosclerosis and strokes from the cholesterol. I thought there was something like calcium channel blockers to help with people who have arteriosclerosis from calcification? I know these things are hard on the liver, but if they take better care of your liver, you might be able to tolerate more of the drugs you need. I know when your liver screws up, its like having an allergic reaction all the time, which is what I'm going through now, and my skin is all red. Another thought would be to get a second opinion from another cardiologist, or simply talk to the nurse at the cardiologist's office about your concern and let her see if you can talk to the doc or she can relay a message. I actually wrote a letter to my doc listing the reasons why I felt a certain test should be run, and he scheduled it right away and was very good about it. Sometimes, they just figure you'd rather not go through more pain than you have to, but worrying is pain too. I would follow up on the liver, that is serious and gets bad fast. Luckily, liver and other organs regenerate, so if they can get your AI under better control, hopefully some of these things will heal. As for the cholesterol/calcium problems, you're right, they need to nip that in the bud. Well, I'm so sorry you are going through all of this, Kristin and I wish I could just make it go away, for you and everyone. I'm sorry if this post is weird, I just found the body of my little white chihuahua yesterday after she was missing for three days and found it because a group of buzzards were by the side of the dirt road where I live. There wasn't much left, but enough to know it was her and I guess it's just hitting me really really hard. Well, it's better than wondering and calling and searching every day like I have been. I'm just a little out of it right now.
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
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
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments


CNSKris
Regular Member


Date Joined May 2006
Total Posts : 236
   Posted 8/25/2007 4:39 PM (GMT -7)   
Marji: They have never checked to see why the liver and spleen have been swollen for so long - over 10 years now. My blood work comes out okay. I did have trace fluid in the cul-de-sac and a lesion in the liver about a year or so ago. They did another Cat Scan recently and this time the lesion isn't there, so my doctor says that I am now okay and my liver is fine. I don't understand this. Especially when they always go right to checking the liver as soon as I enter the E.R. no matter what reason I come in. They practically ignore my heart and kidney at the E.R. I am not sure why the concern.

I haven't followed-up on the liver because the tests come out okay. I do get colicky pain in the liver a 1/2 hour after eating but otherwise no symptoms. I can deal with this pain, it is mainly an icky feeling. When it swells, I go to the doctor. The swelling seems to come and go, just like the kidneys swell these days. You can literally see it poke out of my body.

Speaking of livers and kidneys, what is going on with yours? I am really worried about you. You have been quiet about it recently. I don't understand why the problem in diagnosing us. Me with it back and forth, and you with it being just an AI disease. It is AI alright, but obviously a lot more. It just feels like the clock is ticking all the time. The doctors act like I am at the beginning of this disease. Funny, looking around, it seems like I am at the tail end of the disease. Just because it hit the kidney last, doesn't mean it just started. There are some really strange views out there and it is tough when you have to fight this alone. Thanks to you and the others here, it gives me the strength and courage I need as if I weren't fighting this alone. It makes a HUGE difference. Honestly, I think it saves my sanity and what is left of my faith in this world most days. Makes a difference and means the world to me. Thanks again and keep me posted, please - Kristin
 
  Dx:  Lupus CNS 11/2005; Current - kidney disease, enlarged heart, MVP/regurg, dementia; GERD; vision loss, narcolepsy, rheumatic arthritis, IBS, ovarian cysts, raynauds, EBV/CFS, inflam. liver/spleen. Rx:  Atenolol, Aricept, Flexeril, Motrin  Previous-rashes, hemi-pelagic migraine, sensory loss, amnesia, PTSD/Dep., host of neuro problems, pregnancy compl., False pos. syphilis, fine speck & homogen ANA; IgM; staph/strept infections, colonitis, pancreaitis, gastritis, costochondritis, pericarditis, Hashimoto's, dyspnea, hyper/hypotension, lipedemia, ulcers, pneumonia, anemia, Scleroderma symptoms, vein swelling, etc.  
 
 


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 8/25/2007 8:41 PM (GMT -7)   
Hi Kirstin--
I get the same thing with the liver, and even if the enzymes are abnormal, they say they are normal so I get copies of the labs. It sounds like you get some chronic inflammation and they need to take that more seriously. Just recently, in the last year or so have they begun to take fatty liver, ai hep, drug induced hep or fatty liver seriously instead of chalking it up to your meds and saying, "well, you need to take these, so oh well, nothing we can do." There are other meds a person can take to help you tolerate your regular meds better. I know it doesn't make much sense, more meds to help you take meds, but it does work. I'm an example. I suggest you find a good hepatologist, make one visit bringing your labs and records of prior problems--like I go to Borland-Groover clinic where all they do is research on GI and livers, but Johns Hopkins, Cleveland Clinic and many other big medical centers are performing clinical trials on many once thought benign liver conditions. You doc is right, the liver heals if they get the rest under control, but they shouldn't be assuming with your liver but running very specialized tests that probably only a hip, on the ball hepatologist would know about. GI guys are usually not good enough to handle complicated liver problems or patients with complex medical history and liver problems. It's definitely worth a visit and I'm surprised with your prior problems that they don't want you to be followed, checked out once a year, that's what I'm supposed to do. I think mine is getting worse, but I will plug along, accumulating more and more new fun symptoms like horrible nausea, diarrhea, and worsening abdominal pain, and have more and more dietary restrictions until I am very limited. This will happen over a period of the next ten years or so, from there it can get worse and I can start to get really sick, though I'm pretty good about sticking to the diet most of the time. It takes so many years for liver disease to really make you sick enough to be facing a transplant or other surgery usually, decades, but you just feel like crap the whole time and weird stuff happens along the way so it is frustrating. I hope you find a good hepatologist you can see once a year to make sure they are taking care of your liver because with your kidneys and heart the way they are, something's got to be working! Also, the hepatologist can fight to make sure you don't get prescribed meds that hurt your liver and can support you in getting better meds, when other docs might fight you. Well, its always good to hear from you. I should be alright till at least fifty, which is eight more years. The prognosis isn't that great for women with diabetes that are overweight and have fatty liver and are over 50, and I have some other problems to boot. In a weird way, I am otherwise pretty healthy as far as I know. So many people have it so much worse. It's just weird to have a problem like mine where they say it's going to get bad, but not for like twenty years or so. Well, by then I will be sixty and oh well, I'll worry about it when I'm in my fifties! I'm glad you are concerned about your liver and kidneys, they are so important. I think they give cellcept to people who get liver transplants, so it is somewhat safe on the liver, but hard on the kidneys I think, but its nice to know there are some meds liver prolem people can take. Plaq is real easy on it too. Well take care. You are in my thoughts and prayers alot, and thank you for the help on some of my sons issues. I will be continuing the fight on that front.
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
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
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments


CNSKris
Regular Member


Date Joined May 2006
Total Posts : 236
   Posted 8/27/2007 1:32 PM (GMT -7)   
Marj - Thanks that was a lot of helpful info. Been having the nausea and diarreah for about 10 months now. Just thought is was the kidney but you're right that is when I get the colicky feeling in the liver, the pain in the spleen area and then comes the blahhhh... two hours later I am okay again. No wonder I can only eat once a day now. Have no idea about medicine tolerance. My body refuse all but 1 reg. and 1 intraveneous antibiotics does that count? Currently, I only take the heart medicine. They refuse to give me "lupus" medicine cause it would make life worse for me. I was trying to talk them into Cellcept (they never heard of it :), but I guess that will get shot down now that it may be bad for the kidneys. Stupid kidneys. (Stupid heart, stupid liver....)

I have some weird thing where the organs inflate then deflate off and on for years. They are usually okay until infection or the "itis" thing hits. I am glad to hear the liver can repair itself. Apparently everything can. Suprised that my body has no problem attacking itself but can still repair itself. Kooky. I guess I'll get to the heptologist as soon as I get done with the nephrologist and cardiologist. I will work my way there eventually. Every time I get close another crisis happens, so I doubt I'll actually get there. We will see, hope so. Someday, over the rainbow.

Did you get your kidneys checked out yet - tested? (I told you I would bug you) Still, I think your liver is getting help these days or getting worse. I know, I know, you have more than enough on your plate. Same here. My head is sooo spinning. You have diabetes, lupus and liver problems with some symptoms screaming to have your kidneys checked out. I am concerned for your liver and kidneys too. Please keep an eye on it. Maybe I'm just projecting but I worry.

Hope you and your son continue to get good help. Just know that I am here for you and going through it too. Hugs - Kristin
 
  Dx:  Lupus CNS 11/2005; Current - kidney disease, enlarged heart, MVP/regurg, dementia; GERD; vision loss, narcolepsy, rheumatic arthritis, IBS, ovarian cysts, raynauds, EBV/CFS, inflam. liver/spleen. Rx:  Atenolol, Aricept, Flexeril, Motrin  Previous-rashes, hemi-pelagic migraine, sensory loss, amnesia, PTSD/Dep., host of neuro problems, pregnancy compl., False pos. syphilis, fine speck & homogen ANA; IgM; staph/strept infections, colonitis, pancreaitis, gastritis, costochondritis, pericarditis, Hashimoto's, dyspnea, hyper/hypotension, lipedemia, ulcers, pneumonia, anemia, Scleroderma symptoms, vein swelling, etc.  
 
 


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 8/27/2007 2:33 PM (GMT -7)   
Hi Kristin--
Gosh, you're in the same boat with the nausea and diarrhea. Like we are just supposed to live with it for the rest of our lives. I keep telling them, "its bad," and they say "oh" and I have to beg for some meds. You're right about the liver, I'm probably just going through the second "oxidative stress" that triggers the fatty liver to become inflamed and scarred. I hope not, but it says that unless I can get my BMI down to just 20, now at 30 or just above, I will progress. But I can't lose weight when my liver won't burn fat anymore and the docs know that. I guess I may be able to get bariatric surgery (I'm not that heavy!) but it is recommended to get me down to a low weight and has been shown to actually help the liver (all but jejunal bypass, which hurts the liver). I don't know. I really don't want more surgery. I'm sorry that your organs do that inflammed and swelling thing. My heart did that, I gues I have antibodies to it. They said my kidneys are fine, and had CT. They may still give you cellcept, because they do use it for transplant patients and for interstitial cystitis, which is an ai like bladder problem sort of. But shame on your docs for not knowing about it. Hepatologists are really good because they specialize in that one organ so they can know alot about it and they know alot about autoimmune diseases and stuff because many people with hepatitis get lupus and the drugs they treat hepatitis with can cause lupus, it made me worse. But they know what drugs you can safely take. I'm with you though, just get sick of docs, trying to present a case like you're a lawyer about what's wrong and how you want to improve your life. Well, take care and hope you get your stuff sorted out, too. I have a feeling that the nausea and diarrhea will be just another "oh, that's interesting". That's the way it's gone so far. They did do an ultrasound though and except for liver all ok. Take care and you are in my thoughts and prayers. My son is doing better.
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
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
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments


emmi
Veteran Member


Date Joined Apr 2005
Total Posts : 1529
   Posted 8/27/2007 7:54 PM (GMT -7)   
Hi guys,
Just thought I would chime in here, they give cellcept to those who have had kidney transplants as well, so I'm fairly certain it's pretty kind to the kidneys :-)
xoxo emmie
</FONT>

SLE, limited scleroderma, Sjogrens, Hashimoto's Thyroiditis, seizure disorder, Raynauds, Hashimoto's (or Autoimmune) Enchephalopathy


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 8/28/2007 9:55 AM (GMT -7)   
Kris--
I just noticed you are on Motrin. That's a major No-no as far as your liver goes. No wonder it is inflamed. There's tons of information that motrin causes liver damage. I'm not even allowed to take at all or any NSAIDs. I don't know what your other meds are but I would seek a second opinion on some of this because there's better stuff they can give you that could help your inflammation go away. Flexeril not great either. It took me almost twenty years, but I developed an allergy to that fairly recently. I really hope you see a hepatologist so he can get your meds straightened out. Wouldn't it be nice if there was a program like The Swan, where they fixed all your guts inside instead of just the outside? That would be like God's reality tv.
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
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
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments


CNSKris
Regular Member


Date Joined May 2006
Total Posts : 236
   Posted 8/28/2007 1:12 PM (GMT -7)   
Emmie - glad you chimed in - always welcome to do so. Thank you.
Marji - I thought that is what it sounded like to me, that you already had lupus and they just gave you something to accelerate the process for you. Docs are weird, I fight about the motrin and toradol all the time. I only take it for the days that I literally fall to the ground in pain. Thankfully it is a rare occasion these days. Didn't know about the Flexeril, glad you told me. As with all the medication, except for my heart one, I take only for a very short duration. My thinking is that if I can sleep through the pain, I don't need medication. Only when I start to go insane from lack of sleep do I take medication. Medicine scares me, dependency on anything scares me more. Oh, how I wish there was a Swan like show, I would beat people up to get in there. Ok not really.

I am very glad to hear your kidneys are okay. Depend more on the blood/urine tests though, not so much on the CT scan. My CT was good also. My tests were not good. I guess your liver does the same thing where it hits and then backs off a bit. All my flares seem like that. It is just that the hits get harder and more severe. One day one of those organs are going to give out. Good, great, I lived this far but like you said, why do I have to be an attorney going in for trial twice a year. Why don't they just "get it" by now. I get it. I don't like it, but apparently I have an easier time accepting reality than my doctors do. For over 10 years, it is the same thing the same way year after year. Just a different system/organ each time and it gets worse each time. Duhhh. Funny thing, is I am a paralegal by trade. Did this kind of thing for clients for years. Not fun when you are the sick one on trial though. Especially when the judge and jury are your doctors. Wish it were law, then there would be some hard and fast rules to go by. No so here.

I am so wiped out and not functioning well lately. How do you pull yourself together under this much pressure and being unwell? I seem to be okay but then there is only so much I can take and then I start bawling my eyes out. Think I'm starting to lose my sanity a bit. Definitely hit a brick wall and unable to get the pieces sorted out. Hope I don't get depressed because I can't seem to get it together again. Trying to just hold on lately. Stinks, can't tell if the illness is making everything more stressful or there is more stress and I can't get it together enough to function. Do you get confused like that? I feel like I am in the twilight zone - nothing makes sense right now.

Thanks again for sharing with me - Talk to you soon - Kristin
 
  Dx:  Lupus CNS 11/2005; Current - kidney disease, enlarged heart, MVP/regurg, dementia; GERD; vision loss, narcolepsy, rheumatic arthritis, IBS, ovarian cysts, raynauds, EBV/CFS, inflam. liver/spleen. Rx:  Atenolol, Aricept, Flexeril, Motrin  Previous-rashes, hemi-pelagic migraine, sensory loss, amnesia, PTSD/Dep., host of neuro problems, pregnancy compl., False pos. syphilis, fine speck & homogen ANA; IgM; staph/strept infections, colonitis, pancreaitis, gastritis, costochondritis, pericarditis, Hashimoto's, dyspnea, hyper/hypotension, lipedemia, ulcers, pneumonia, anemia, Scleroderma symptoms, vein swelling, etc.  
 
 


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 8/28/2007 7:28 PM (GMT -7)   
Yeah, Kris, I feel out of it alot, sometimes the whole thing seems unreal almost like waking up from anesthesia or something. I give you a lot of credit for working. I haven't been able to for a while. Lately, I'm just lucky to make it to the bathroom. I was like you for a long time, wanting to be sharp and not able to take a lot of pain stuff. Ultram is good, non-addicting, but a little hard on liver, but hasn't hurt mine for some reason. I can't take toradol at all, I go into liver failure. It is very hard on the liver. I nearly died from toradol. Ultram isn't as strong as toradol, but if you take it regularly, it works quite well and even gives me a litle energy, but just being out of pain gives me energy. Do you have med restrictions that are special because of the CNS stuff? I know when my thyroid is goofy, I get goofy and things don't seem right. I used to be in computers, a pretty high position and bossed people and led projects for big companies and I was just ultra-sharp, on the ball, smart. Then I started freezing up, not remembering things. I thought I was getting alzheimers, and seeing things out of the corner of my eyes and feeling weird. My thyroid was a mess, but I thought I was losing my mind. I mean, I knew stuff wasn't real, I knew my moods were extreme, but I just couldn't help it. I could crack a joke and be weeping, I was so messed up. But synthroid straightened that out alot alot and being out of pain. I can't believe you are still working with everything going on with you, you must be a very very strong person. I really don't have to pull myself together much, but try to do things like write and do puzzles and things to keep my mind active. Its so hard being a woman going through all this because of the whole hormone reproductive things. I ended up having to have a hysterectomy because of interferon treatment several years ago and I got really bad endometriosis and polycystic ovary and was basically sterile and really bad off. After my hystero, I went on estroen patch and that really made life better. It made me feel like a little girl again, when you wake up on a sunny saturday morning and you have all day to play and everything is great. I love estrogen, and apparently my body had stopped making it a while ago. Anyway, I hope you don't get depressed either, but sometimes we do need a good cry. I learned to love my emotions because for a few years I was put on meds that got rid of my emotions and I was so flat. Anyway, don't forget you have friends here to laugh and cry with, or both even if you are goofy like me. Know you are in my thoughts and prayers and I have faith that you will get through this part of life in the best possible way. Just don't work too hard. I like the song Big Rock Candy Mountain where they have the line "where they hung the jerk that invented work..." I just don't have that work ethic, that we should kill ourselves working, though I did it myself for many years because that was how I was raised and I had kids to support. Well, please be well and I will keep you in thoughts and prayers and hope that something wonderful happens to knock you clear of any funk.
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
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
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments


emmi
Veteran Member


Date Joined Apr 2005
Total Posts : 1529
   Posted 8/28/2007 9:58 PM (GMT -7)   
Kristin,

Maybe you feel like you are barely holding it together because you just barely are? Just a thought...you feel lousy physically. You have needed treatment for physical symptoms and conditions for a long time and haven't gotten them. It had seemed like maybe, possibly it could happen, but now you are afraid to hope.

You say you don't like to take pain meds because you figure if you can sleep through the pain you don't need it. (I get that because I think/thought that way until someone pointed out to me that I might have been sleeping but it wasn't quality sleep. The pain was interfering, and I was most likely not spending as much tiime as needed in each stage of sleep to be as rested as possible. For me, the pain was actually waking me up, and I would then have trouble getting back to sleep.) Anyway, I now finally for the first time in years has an rx for tramadol (generic for ultram). I only take it at bedtime and when I am laying down during the day if I am in pain higher than 6 because it makes me sleepy. Otherwise I do warm baths, stretching, heat and tylenol for pain. I HAVE to take enough other meds as it is (I have no choice!) Anyhow, the point here is you might want to reconsider your thinking on pain meds, even tylenol PM or extra strength tylenol might help you sleep better.

Between not sleeping well, not having your physical illness treated, the stress you live under, is it any wonder you feel like you can't put all the pieces together? You've got so much to deal with...are there any counseling services available to you--even through your kids--that might even link you up with something that might be helpful?

Thinking of you and saying a prayer for all of us lupies and uctd's and whatever we might be's tonight!

xoxo emmie
</FONT>

SLE, limited scleroderma, Sjogrens, Hashimoto's Thyroiditis, seizure disorder, Raynauds, Hashimoto's (or Autoimmune) Enchephalopathy


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 8/29/2007 3:18 AM (GMT -7)   
Just a shout to say hi emmi!
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
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
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments


CNSKris
Regular Member


Date Joined May 2006
Total Posts : 236
   Posted 8/29/2007 7:39 AM (GMT -7)   
Thanks Emmie and Marji: both your kindness and words make a huge difference. Yeah, guess there are some things going on that contribute to me not feeling up to par. Do have a counselor but don't see him much because of all the other medical and work obligations. They never seem to help much, but their direction does help some. There is just not enough of me to get done all that needs to be done. Plain and simple. Have thought I should get the thyroid checked again. Even though I have edema, I don't think I should have gained 25 pounds. The last time I did that I had the Hashimotos. I did get really weirded out with that too. Makes sense to check it. Perhaps that is why my energy is so low and the increase in confusion. I don't think my kidneys and heart warrant the added problems I am having. I do have a lot of trouble breathing in this humidity so that also wipes me out faster. Just stinks, this constant adjusting to new symptoms and the challenges it creates. Kind of hope it is the thyroid or something treatable. I really do love my job, but I can't do it anymore, I don't want to quit if it can be helped. That, and I am not in the mood to starve for two years waiting on social security, AGAIN. Just trying to hold on so I can make a clearer decision. In the meantime, I hope my mistakes at work don't equate losing business for my boss. It is so embarrasing for me to be going through this.

Never tried Ultram, thank you both for the tip. I didn't think of Tylenol either, I have been programmed to use Advil/Motrin. Time to switch gears. Not in much pain right now aside from the arthritis which has come back in the last few days. I will try the Tylenol. Thanks again so much. Hugs - Kristin
 
  Dx:  Lupus CNS 11/2005; Current - kidney disease, enlarged heart, MVP/regurg, dementia; GERD; vision loss, narcolepsy, rheumatic arthritis, IBS, ovarian cysts, raynauds, EBV/CFS, inflam. liver/spleen. Rx:  Atenolol, Aricept, Flexeril, Motrin  Previous-rashes, hemi-pelagic migraine, sensory loss, amnesia, PTSD/Dep., host of neuro problems, pregnancy compl., False pos. syphilis, fine speck & homogen ANA; IgM; staph/strept infections, colonitis, pancreaitis, gastritis, costochondritis, pericarditis, Hashimoto's, dyspnea, hyper/hypotension, lipedemia, ulcers, pneumonia, anemia, Scleroderma symptoms, vein swelling, etc.  
 
 


emmi
Veteran Member


Date Joined Apr 2005
Total Posts : 1529
   Posted 8/29/2007 9:01 PM (GMT -7)   
Hey to you Marji! Hope you're making some progress on that novel. I don't care how good bad or whatever you think it is. The point is you are doing it!!!

Kristin, heck, yes get that thyroid checked. Hashimoto's can make you alternate between hypo and hyper thyroid. Contrary to popular belief, hyperthyroid can actually make you gain weight and hypo can make you lose weight--not those are not typos. In fact, many of what we think of as typical hyper or hypo symptoms can be attributed to the opposite thyroid condition. Your "foggy" mental state, mistakes at work and inability to make decisions could definitely be thyroid related. Of course on the other hand, your thyroid could be just fine. Oh, the beauty of AI disease. That's why it's good to have forums like this one.

Right, Marji???

xoxo emmie
</FONT>

SLE, limited scleroderma, Sjogrens, Hashimoto's Thyroiditis, seizure disorder, Raynauds, Hashimoto's (or Autoimmune) Enchephalopathy


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 8/30/2007 8:53 AM (GMT -7)   
Yep.  Emmi you know all about that thyroid stuff.  Hey, on that Em I was wondering how high your TPOs have to be to be considered to have HE (hashimotos encephalopathy).  I know from a post while back they can go to the 8-10000s, but the highest mine have ever tested for, and this was when I was alot more well, was 1000, but I have some mild brain stuff and some atrophy and I wondered about that, my last endo didn't see HE as a separate disease except when it was very severe, everything else, she treated like plain old hashis, but isn't the tx for HE different? or do they only treat you when you have to go into the hospitaal and stuff? 
 
I hope you are doing well Kris.  I'm pretty sick, they think this celiac or tropical sprue and it is horrible.  Light a match around me and the whole house could go up.  What I would give to just take a normal crap.  You know, the little things we take for granted!  I got my pain med refilled and actually the hydrocodone is helping my nausea, which it should do the opposite.  Now I'm wondering if maybe some of the severity of the nausea was from being in tons of pain, sometimes that happens when it creeps up on you.  Maybe just some buffer in the pill helping or diet or not eating much. 
 
Have you heard anymore about your heart and what they plan to do?  I would think they would be able to manage your fluids and kidney stuff to do surgery, they do so much heart surgery so routinely.  They work with so many people with severe injuries and complications.  I hope they can get your kidney stuff better under control so that it doesn't progress or at least not so fast.  I know from my grandfather who had a quadruple bypass that he was down to one working valve, and not working well, for years and years and years and smoked like a chimney. 
 
Well this post is long and don't want to crash the server!  Thanks so much for this great family here!
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
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
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments


emmi
Veteran Member


Date Joined Apr 2005
Total Posts : 1529
   Posted 8/30/2007 10:01 PM (GMT -7)   
Marji,

I don't know that there is a "magic number" for the TPOs in order to be diagnosed with hashimoto's encephalopathy. High TPOs are one of the symptoms necessary for a diagnosis. No, you do not have to be "bad enough" to be hospitalized in order to be diagnosed and treated for HE. The treatment for HE is very different than that for hashimoto's thyroiditis. In fact, many folks when first diagnosed with HE are euthyroid (neither hypo or hyperthyroid). Surprisingly, endocrinologists do not know much about the disease of HE. Neurologists are the docs who are more likely to know about and treat the disease--altho many neuros are not familiar with it either.

xoxo emmie
</FONT>

SLE, limited scleroderma, Sjogrens, Hashimoto's Thyroiditis, seizure disorder, Raynauds, Hashimoto's (or Autoimmune) Enchephalopathy

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