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Old 11-08-2007, 05:52 PM   #1
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One day you wake up and find yourself about to board a roller coaster...

It was 1972. I was 19 years old. Married for only 9 months and afraid to admit, I was already pregnant. But there were many other, (so I thought at the time) more important things to deal with. Like my much older and troubled husband being in jail for attempted murder. The pain was unrelenting. Both psychologically and physically. When the physical pain got so intense that I could not stand, I crawled to find help and ultimately found myself waking up from surgery for an ectopic pregnancy that had ruptured a fallopian tube. That surgery saved my life, as did another one that followed in 5 weeks. However it also was how I became infected with Hepatitis C.

It was in the mid '80s, when the first test for detecting this virus was developed that I learned I had it. I was without symtoms for many years. In fact, I forgot all about it and led a fairly normal, sometimes raucous, single life.... until about 6 years ago when I found myself more sick than well with, primarily, gastro problems and extreme fatigue. However, it was only in late 2005 that a internist told me that there was "treatment" for the Hep C that most likely was causing all the other problems.

What follows is some journal entries I made once I started the medical treatment to rid myself of it. Some of the more personalized ramblings that would not be of interest in this format have been left out.

My hope is that all of you who are in or about to go into "treatment" will benefit from something offered here. When I started this, I didn't find anything "on line" I could relate to or gave me a real life view of what I could expect.
I truly did not expect to be one of "those people" who had all the ugly side effects. Afterall, I had no problem with side effects from any other medicine in the past...I was strong and had support of family...this was not going to be such a big deal. I was not fearful. I was not weak. I was as informed as I needed to be on the subject...well, sorta. Read on. BTW-I now have no detectable Hep C viral load


July 12, 2006

Pegasys and Ribavirin. Those are the Drugs, Medication, Treatment, whatever you want to call them. They’re nasty. But, then so is the problem they’re meant to cure, Hep C. Or, as I first heard it called, Non A Non B Hepatitis. But, I won’t digress 35 years. This is about here and now.

So far, so good is my experience. Has not been bad, but then I did just start them last Friday evening; it’s only Wednesday. If I’m lucky and they work, I’ll be on them for 48 weeks. Yes, another year in the life………

Wasn’t short work or easy time to get on this program of treatment. But, once I made up my mind, it was on. Interferon is the shot and the pills are a chemo derivative.
The decision to go ahead with it involved numerous meetings with the Internal Specialists at Wake Internal, research on the Internet, talking with people who had done it and talking it over with my employer and my family. ( Well, two of my sisters). Knowing that the cure could be worse than the curse, knowing that even then it may not work, was part of the consideration. The cost too, even with insurance, the cost was a big issue.
Just finding the pharmacy that could get me the medication (these are not drugs stocked by your neighborhood drugstore), and then finding the right size needles to give myself the weekly shot was a traumatic adventure. I was in the middle of loading the syringe when I realized it was the wrong size and would not hold all the medicine. I was sweating so much that had to keep rubbing my hands dry to make sure I didn't drop anything. While I knew, (know) it’s not that big of a deal. Millions of people must do it everyday of their lives. But, see, I’m not one of those people and I’m not medically smart. Uhhhh, experienced. However, I called the nurse for the drug supplier to find out what I could do. The only answer was to get dressed, go to the local drugstore before it closed for the evening, get the right size needle but not worry about the fact that I still wouldn't get the whole dose. What aggravation! I didn't know what size needle/syringe and when the pharmacist starting asking me if thus and so size would work...? That was when I KNEW this was my responsibility and my responsibility alone. There is no one else to depend on. It was up to me to check out all the details, all the possibilities, make all the phone calls, schedule all the insurance matters, paperwork, etc.

The Ribavirin is in pill form and I take 5/day. It's easy to take, but I can feel the effects already. Low fever, chills, nausea and extreme fatigue. Yesterday was a bad day. Today, not so bad.


July 18 2006

Yesterday = bad. Today = not so bad.
Didn't feel good at all yesterday. Worked most of the day. Made it until 2:30. Fever was the worst. Burning eyes, no energy, nausea, aching joints. Slept a little late afternoon. By 8:00ish the fever was gone but I was wasted and only worked a hour or so inputting some new prospect info into the company system.
Very fitful sleep. Finally got up about 5:30am. Didn't feel good most of morning. Nausea. Wishing I could either throw up or just lay down and go to sleep. Nurse said to be sure I drink liquids; water, energy drinks, 100% fruit juice and take ibuprofen. Had to buy a thermometer today so I could keep track. Got much better this afternoon. Temp 99.6 when I got home, about 6:00. No appetite but I have to eat so i can take the medicine, which makes me feel sick and have no appetite. Catch 22? Right now, I'm cooking something from one of those frozen bags of pasta but the smell is really getting to me. Makes me feel sick-at-my-stomach. Really hard to find something i can make myself eat. The smell of cooking food mostly makes my stomach turn but I can't live on salads, fruit and cereal. Not being hungry for sometime is brand new for me. I mean, I know I need to eat (got to in order to take medicine) and I get hunger pangs but it's so hard to decide on something then have the energy to put it together. Surely, weight loss is in the near future. Food-yuk!


November 2, 2006

The day started out as usual. I got up feeling very blah.. Thought it was due to knowing what was facing me at work. It went down from there . I couldn't keep getting ready. My mind was not right. Couldn't focus, couldn't stay on course. I found myself getting more agitated, more upset, more nervous.

Lately, I've had a few bad times. Lately, I've had a few good days. It's a roller coaster that I can't get off of and I've been holding on real tight with my eyes closed through the real scary parts. Persevere? Just keep putting one foot in front of the other. Persist? Have faith in tomorrow. Just “git 'er done!” That worked for a long time. Works on and off lately. Didn't work at all for me today! I finally realized that I was pacing back and forth, wringing my hands, saying over and over “what am I gonna do, what am I gonna do, what am I going to do?”
It's almost like watching someone else have a breakdown. I know she knows how to keep it together and she has stayed in line almost all the time. Today she can't hear me. Today she has broken and she will not stop crying!! No, I do not feel sorry for her. SHE KNOWS BETTER! She knows she will regret not listening to me and will regret involving other people in her pain. But, I am unable to keep her from doing this,,,she is breaking down despite all our good sense. What is happening to me? Why can't I get my act together? Helplessness.

Can't stand that feeling!! Too much bad emotion. Cry, Cry, Cry. Have such a feeling of anguish. Yes. OK. I know it was possible. Yes,, I know all those things smart people know about how depression works but I'm not able to take it!!!!!!1=! A failure, that's how I feel. Not able to talk about it and communicate my thoughts or feelings very well. Stutter and stammer and cry.
So I have had to call in the back-up and ask for help from everyone and anyone. Pride is totally useless and uncalled for now. Ego, get out of here. I'm too afraid of myself right now to trust me being alone. That's a brand new feeling. Alone is how I cope. Don't, can't depend on anyone else. But, I do not know what else to do. No choices. Not up to me anymore.

OK, Mel is here. It's going to be OK. I don't have anything to worry about. All I have to do now is take care of myself. OK. It's going to be OK. I am safe. I am loved. I am just having a bad reaction to the meds. It will be better tomorrow. Things will work out. I will get well and this all will be a bad memory soon. I can deal with bad memories. I know those are completely in my control. Memories fade in time if you don't give them any fuel.

It seems so far away now...the end to this “treatment”. I can do it tho'. I will see it through to the end. I'm not giving up even with this new pressure. Mel is here. I'm going to be ok. Take care of myself. Going to bed now. Must sleep. So tired. Perhaps I will dream sweet happy things........

December 12, 2006

I am so much better! Mel got me through it. She took me to the Dr. He took me off the “poison”. Even tho' the virus was getting killed and my levels were showing good results, his opinion was that I had to take a break from the meds and get my head head right. Guess the crazy lady scared the be-jesus out of him. Good to have Mel there to talk for me since I was a mess. Took me off the Wellbutrin and gave me some Effector until i could get to a psycho dr he recommended. I still wanted to continue on the meds so i could get this “treatment” over with as soon as possible, but that was not gonna happen.

I lost my mind 5 weeks ago. I lost me. I have seen the head dr twice. Didn't want to, had to. He took a few notes, asked me a few things and gave me more Effector samples. Over the course of 3 weeks they increased dose from 75 mg to 150mg. It has made a big difference in how I feel. Getting off the Hep C meds has improved my symptoms to the point that only left over is my hair falling out. Big Time!

I'm trying not to traumatize myself about it, but----it's always been the one thing i took pride in about my looks. Vanity thy name is woman. It comes out continually. Big gobs of it when I wash it, covers my clothes. Combing it now is a heart-breaking effort. If I run my hands through it, 10 or 15 strands come out. Vacuuming the floors is another story. Have had to cut the strands of hair off the roller and it's globs and blobs of it in the canister. The top is so thin that any part is half inch wide. It's dry and ugly! What use to be the best part is now the 2nd worst. My fat face continues to be #1. Yeck!

Oh, yes. The sleeping pills. *****n CR lets me sleep all night and that's a change for the better. Only thing that wakes me up now is to pee and brushing the strands of hair off my pillow, my face and out of my mouth.
So, all was well.....for a while. Last Friday back to he Interferon shot. This Friday, I start the Ribavirin pills . I'm in line to board the roller coaster, again. But this time, I know more what to expect: headaches, nausea, upchucking, chills, fever, and extreme fatigue. Hold on tight, close your eyes, pray for the end and that the crazy lady stays in the closet.


January 1, 2007

Happy New Year! Another new start. The time that we take stock, revise plans, make resolutions. Not me. Once a year is not often enough for me. Review and revise has to be a part of my on-going week to week activity.
Been back on both Hep C meds, for over a month-or almost. Some old problems are back and worse than before. Headaches (debilitating non-stop pain), and so tired. Dry eyes, dry mouth, dry itchy skin, no taste buds, no appetite. Nausea is most bad on the night of and day after “the shot”. More trouble sleeping (getting to and staying) now, so the dosage on that has been increased. The hair loss continues. It is so disheartening.

A mystery condition that's been sporadically bothering me for years is back. Those red, sore, feverish bumps on my skin. One on an arm a few weeks ago, small. But now 2 on left thigh. And for the first time, one on my chest. I have a suspicion that they are (and have been) a sign of the viral problem going on in my blood. Maybe, when this thing is banished FOREVER from my body, they will be too!


January 15, 2007

Boy! I am exhausted! It's a good tired, but wish I still had lots of energy for the evening. It's 5:20pm and I suspect M&Ms (sisters) will be here by 7:00 (maybe 7:30?). So happy they are coming here! Mac just called and they are in Greensboro!! Yippy!! This is gonna be fun!! Just hoping they can stop thinking of me as sick and start seeing me well. I need positive energy and not sympathy.


February 2, 2007

Friday night. Use to be date night. Now, it's shot night. If it weren't for the anti-depressant, I'd probably be crying or pacing and wringing my hands. Gave myself “the needle” about 45 minutes ago. Have eaten something and taken Ribiviran and Ultase.

Had Dr's appt on 22nd. He was better this time. (Ha!) Spent more time talking to me and asking me questions. The worst thing is his pronouncement that I'll have to be on this stuff for 48 weeks, no matter where my viral load is. I had so hoped that I might be able to get off it earlier. And, now there's 5 wks to add to the end so that means Sept is the end month if all goes well. Apparently, it takes that long if you're a genotype 1B to be sure the virus is done, gone. Well, as they say.."undetectable".

Blood tests were not too unusual. Some were too low, some were too high, but no news on the viral load yet. Glucose was high, but they said it was because of the “non-fasting” blood test. Red & white counts still low-as expected. Immunity to anything that comes along is compromised. Nothing new to that, they have told me to stay away from small children or anyone who is already sick. And it does account for me catching Mac's cold when she was visiting. Mel got it too.

However, last Friday was a very sick day. I've not felt that bad in a l o n g time. Had to stay home all day, close to the toilet and Kleenex and Ibuprofen. But, I had to see psych dr on Monday. He doubled the sleeping pills and anti-depressants. That has helped a great deal. Have to see him again in 2 weeks. Beginning to feel nauseated and extremely tired now. It's time for more meds too. That bit of news was tempered some by the fact that I've lost 25 lbs. Could be more, but I'm not surprised.


February 15,2007

Another week gone. Another Friday night. Another shot. Another chance to cure myself of Hep C. New attitude, better outlook and happier spirit.

The work get quite difficult from time to time. Had to take another day off last week. So tired that I could not stay awake at all! Slept all day and all night. Very frustrated due to loss of control. Want to feel normal and energetic again! Want My Hair Back!

It's meditation time. Monday, back to the head doc.

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Old 11-08-2007, 05:55 PM   #2
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Re: One day you wake up and find yourself about to board a roller coaster...

CENTER]March 4, 2007[/CENTER]

Another Sunday. Another week behind me. Been a busy work week. Lots to do, lots to bring me down. But, it's only a job and right now not a very good one.
Shot didn't go so well Friday night. Didn't sleep. Too much medication. TOO many damn pills every day. Like now, gotta take an anti-depressant! I do not let myself think about how bad I'd feel if I wasn't' taking them.


March 14, 2007

It's a right thigh Friday night. Long, long hard week. I was good to go out of the gate but slowed down the stretch. Rain storm all day. Drove all day. Windshield wipers all day.! It was a day of gray sadness, blurry head lights, bright red tail lights swimming in the haze, big trucks, blinding wet torrents of water. So good to get all of it done and make it home safe, sound but so t i r e d.
I've taken the poison. Both of them. Re-hydrated my insides. Bags and papers and files and cell phone and food put away. Whew! Talked to myself so I could keep going. Changed into play clothes, put away jewelry, put on these darlin, soft house shoes. OK, now. Now you can rest. Permission granted. Sit down, exhale deeply and rest. Just gotta stay awake long enough to take the medication to counteract the poison's side effects.


March 20 something

It's a Monday. Head hurts and have a low fever. Chills come and go with hands and feet always cold. Infections will not go away. Head, throat and chest congestion. If I close my eyes I'll doze off. Got work to do. Must try to make progress on a few things. Calling in sick is no longer an option. Wondering if there's an option of calling in dead.

Must get to bed (read as: sleep) early. Got a big day tomorrow. Only 6 months to go. This stuff better work. More and more people are encouraging me to go to a Naturalist. Go to healers, nutritionists, etc. Maybe. Maybe, I'll call one of them just to see what they have to say. Yeah, right, just what I need, another medical professional.

My mind goes to a this thought; independence is not going it alone, it's making your own decisions. I've independently decided that I have to take care of my own health. I and I alone am responsible for how I feel physically and emotionally. I have to become more aware of what my mind and body is doing, what my mind believes and how my body reacts to those beliefs.


April 6,2007

I think it's April 6th anyway. Dates get by me. It must be a left thigh Friday night. Tired. Long day, long week. Moving, driving, learning, meeting, talking, listening, working, working, working. To Asheville on Monday. It's Friday at 8:00PM. Got to give “shot” and get “something” to eat. Probably cereal again. It's easy quick and healthy enough. Don't have time or energy to do anything else. Freezing tonight and tomorrow night...? What's that all about? It's April already.??

Very grateful for a safe week. So thankful for all my many blessings. Immensely happy to know who I am and know it's all up to me. Also that NOW is all there is.

A Sunday in April 2007

It's time to think, listen to my inner voice. What do I know for sure. What have I learned this cycle? Do I know what is important to know? Is it all that important? How much does my intellect matter in the end? Not anything. In and of itself, zero, nada, zip!

Taking is fun. Having given myself permission to partake in a healthy way has been one of the “prime directives” of late. However, I know (for sure) it's only gonna be what I give that lives on. Even if it's only intellect. Give it up, give it back. Share what you've got. Take what you need, give what you can. What is my gift?


Friday, the 13th April 2007

At last! Only 5 more months to take this world of medicine. (She said with hopeful excitement) The roller coaster wonder goes on. Maybe it will not do the up-side down rolls and loop-d-loops this time. Standing still, getting off and not have to line up again to heave, lurch forward and then there goes the stomach in the first steep drop!

Don't get me wrong. The stomach isn't the worst. It's the head. The headaches can completely incapacitate me. But then there's the hair, the nails, the skin too. Eyes are dry and burn. Nails and hair (what I have left of both) are dry, brittle, continue to break, chip and fall out. And it's not arthritis making my joints ache. I wish people who don't know what side effects this medication can cause stop trying to comfort me by saying it's an aging process and everyone has to go through these things. Note to self: remember to not do this to other people when you don't know their personal situation. Generalizations are wrong for so many reasons in any situation.

For years I have said, in jest, that I'm way to much trouble for me to handle by myself. But, now ....I need some help and I'm not joking. But not now, I'm too tired. See?


Tuesday, April 24th 2007

Bad day. Bad day. Bad day. Only good thing that happened today is i got a very nice card from Mac. It brought the day to a much better end and helped me feel loved and cared about.


SATURDAY, MAY 19TH, 2007

Been quite a while since I recorded in this way. Since then, it's been stomach churning ups/downs, head snapping sharp turns, and exhilarating rises. Some feeling well happiness, some feeling sick sadness. Some days I wish I had never started this course of medication. The Head Dr has helped, surprise to me. He helped me get through some bad days. He reminded me that my mental and physical health right now is not me. Remember the old commercial about this is your brain...and this is your brain on drugs? Well, he used the same idea to explain why i wasn't feeling like or acting like the "normal" me. The thought lightened my mood and i went back to work telling people; "this isn't me , this is me on powerful mood altering drugs..." A person I don't like and can't identify with much of the time. I am not the self I recognize. Mentally or physically.

The itching improved with application of creams prescribed by Dermatologist. Now I find my vision getting worse and am bothered by eye infections I can't seem to rid myself of. Bruises in places no one would normally have bruises. The anemia can be the cause, I guess. What's left of my hair is cut very short by necessity. Dry skin creams twice-a-day, everyday, have helped with all the bumps and dry scaly spots and itching. Sure wish I could get to that place on my back!

Left thigh shot last night. I can do it much better now. Got a routine that distracts me before and immediately after.

Weight continues to slowly come off. Cleaned out my closet and gave bag after bag to Goodwill. Eating is hit or miss. Some days I'm too sick to eat much and it only gets worse when I do eat. Some days I'm hungry and will eat 3times a day. The right things..that's what hard to accomplish. The time and work it takes to actually shop for, unload, put away, plan a meal, cut, chop, cook, clean up the mess to say nothing of the smell being a real turn off, is more than i can manage. There is no eating in public. It's bad enough that I have to hold my nose closed, put in the food, chew a few times and sallow. Fortunately, fruits, yogurt, peanut butter, cereal and soy milk are my staples.


June 19, 2007

Time, lots of time since I last wrote. The beat goes on. Still seeing Head Dr every couple of weeks. Seems only way to keep him renewing meds for depression, anxiety and sleep. Ordered another round of Interferon and Ribavirin today. Dr's nurse called me yesterday to make another appointment next week. He may want to lower dosage of Ribavirin now that i only have 3 months to go on treatment. That call was probably what predicated by my recent problem with belly pain and thus an appointment with the GP-Primary Care Dr. She had lab take blood, urine and x-rays. Since all that showed I was very anemic-no surprise to me- she sent me to radiologist for ultra sound that same day. It's not bad pain, but has been going on for weeks, so not a temporary condition that was going away on it's own. Not my (one) remaining ovary if it's still operating. Not a hernia. It's a local, sharp sticking pain just below and to the right of my belly button. As of late today, still no call on results. It's wearing me down now and I'm anxious to find out what's causing it. I'm thinking it's just adhesions from past surgery.

Got refills on 2 meds after work today. Some eye drops (the brand Macie recommended) and some cheap hair conditioner..it was 99 dollars!! $85.00 just for the 2 Rx and that's with health insurance!

My knowledge of who I REALLY AM is all that I need to remember. It's all going to work toward my ultimate good.


August 4, 2007

It's been a very long haul, but it's almost over. The end of this month, and I'm free from the “treatment”.

Messed up meds a couple of weeks ago. Mental confusion. Still trying to get back on schedule, but, July 30th, this past Monday, I was “let go”. Dismissed from my job. Fired! Shock, disappointment, fear, disbelief. I let it all in. I'm concerned about how this will affect my clients, but there is not much I can do about it. The fact that it was done so harshly, so cold and without warning was the real painful part. I felt so blessed to be able to keep my job, do the work, make money for my employer while going through this very difficult medical treatment and had tried so very hard to not let any of my clients know how truly bad I felt so many times. I was proud of the way i was handling everything. But, apparently they were not so happy with my "production". I was absolutely blind-sided. I have chosen to just put on my big girl panties and deal with it! Their loss, not mine.


August 17, 2007

I am so very happy to report it's a left thigh Friday night. 1 more right and 1 more left thigh Friday night to go!! Yippee! There is not only a light at the end of the tunnel, but it's very big and bright!! Thank you Spirit.

I've been trying to find my path, my way to get through this life. Lessons and learning all the way. This experience has been a great big lesson. It's not a shy or subtle experience. Serenity. Peace. Harmony. Living with and in Joy. Now, every Now. Easy to say. However, getting easier to do it for more than a moment at a time..

My tendency is to begin to wonder (thinking, always too much analyzing) why I fret, worry, fear so much of the time. This results in taking me right out of the calm and totally peaceful state of mind. Back to the ego, back to the road more traveled, back to my seven known dragons. Deep sigh.

When I am in, what has been termed, my bliss, I know without any conscience or sub-conscience thought, I am in glory. Heaven? I understand there is no “there” there. On the same level there is no “here” either. I am privileged to grasp a bit more of my soul's divinity. It's in retrospect that I've come to realize this is what all the Teachers/Masters tried to teach their human family. Here-in lies the Peace that passes all understanding. The only everlasting truth.

I can't say how, as I don't understand it myself, but this wild, weird, long, scary body and mind poisoning “treatment” of a roller coaster ride has given me courage to discover the most profound discovery of my life. I Am That. I Am. You Are That. You Are. It Is That. It Is. All Is One, Now Here


September 2007

It's done. I'm done. No popping corks, no trumpeted fanfare. But,,,it's over. Turn the last page of this chapter. New beginning........again. Thank You. Bad days due to medication are behind me. Blood (viral load) test to come in a few days. I want to know the results and I don't want to know. It doesn't matter. I am not going to dwell on the what ifs. No fear. No doubts. I'm changed in ways that go far beyond the physical.

I have faith in me, in you and in tomorrow. I have only the best intentions for getting better, stronger, wiser. My health, physical, mental, emotional and spiritual is good and getting better every day.

I have discovered that I do have enough courage to change the things I can. More over, I have found longer periods of serenity by accepting those things I could not change, even if my courage and positive thinking made me try to change them. Acceptance is a very freeing experience. Let go and let God, Let It Be, all that is wise advise. It's the wisdom to know the difference that I have gained most...a very good thing. Thank You.

 
Old 11-09-2007, 07:34 PM   #3
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Re: One day you wake up and find yourself about to board a roller coaster...

hi rider
great journal!
You made it and your words were so compelling! How's the hair coming along? I had the same problem and someone recommended biotin-which is a vitamin. It has stopped falling out.
hang in there

 
Old 11-27-2007, 05:15 PM   #4
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Lightbulb Re: One day you wake up and find yourself about to board a roller coaster...

Here i go i am starting this drug this Friday and i am scared to death, i lost my wife to cancer 9 years ago and i am thinking this may put my in line behind her? the depression also scares me as i am already having do deal with depression issues and i am already on Prozac. my biggest fear is that this drug will knock me down and i will miss out on what is left of my life i am 48 years old now and if this is like the treatment i seen my wife have it was just a slow torture and there was no way to turn back she was going down once she started. at this point what do you think if that treatment and would you go again?

 
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