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Topic : How I Fought My Illness

Number of Replies: 301
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Created on : Thursday, July 07, 2005, 09:05:51 am
Author : dataimport
If you've suffered from a debilitating illness and lived to tell your story, please tell it to us. Share your most uplifting and practical ways to fight off illness.

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November 4, 2007, 11:29 pm CST

Twice I servie cancer

I just been married 2 years in my 40 and found out I have liver cance,and nash. Had surgery doctor said on our next move, go on translpant list in five years you will need new liver. We move again for the 3 time husband job. And the cancer came back.Went to Chi med school head liver doctor said she wouldnt put me on list, due to other health promble said  go home and enjoy the time you have left. Gob bless my husband he didnt take no for a answer,went to rush pby in chicago got on the list made #3 on list.  Two month latter I had my transplant.  All this time Myhusband work 24/7 for his company, great one. cook took care of my mom86 at the time now 89 who live with us. Went from two income to one, till you wait 2 years for ss disb.  Had surgery 13 hours long, in a coma for 15 days,came out had to retrain my brain and motor skills, ever day after and before woek my husband would come see me help me wash,dress at night he bring me dinner, I lost 30 I just could not eat, he made me. Stay for hours then 2 hour ride home to aurroa,il and take care of our dog.Whe even went bankrupt some   equt not pay by ins,I equ 300.00 a day a wound vac machine for 3 months, Now I am in Ca, we just left ut after two years. Thecompany gave my husband a promtion.I now are have surgery on dec 7 on my brain for a pituary tumor growing in to the

sinus area.. What keeps me goinging is the undeing love my husband has for  me. He never yells gets mad when I am sick and cant move or clean and cook. I turned 50 july he even felt bad he could do anything special for me.  August  is our 10 wedding adv we are trying to go back to disney in fla where we spent our honeymood, But thing are tight he just mad we he can do special things for me Itell I dont need then, but he says he loves so much I should have the world.  He is my world. Sorry about spelling words wrong and grammer not all of my brain function can back. In fact I get so nasty and depress i on drugs and when I get means he loves me more.  HE IS MY ROCK,MY SOUL MATE THAT HOW I SURRIVE

 
November 6, 2007, 3:22 pm CST

My life with Epilepsy

I am 28 years old, I am married to a wonderful man and we have 4 children together.  Since the age of 13 I have been dealing with Epilepsy.  I normally had Grand Mal seizures.  And had them pretty well under contol.  That is up until about 3 months ago when I got sick and things got worse.  I started having seizures again.  And not just Grand Mals.  Now I have Partials and Noctournal Seizures also.  My Epileptologist has put me on 3 different anti epileptic drugs to try and control them.  So far its not working very well.  I have heard many people say that "you control your life, you epilepsy doesnt" well, Im trying my hardest to regain the control I once had.  Right now it does feel like my epilepsy does control me.  I can no longer drive or work.  I have to depend on others to take me places and watch my kids when I have to go to the doctors or when I have a seizure and do not feel good afterwards.  It is hard dealing with this.
 
November 15, 2007, 10:20 pm CST

My Story My Lessons

My life changed in 1999 when my Husband left after 22 years. In 2000 I had to have my uterus removed due to a large Fibroid. 2003 I moved to another state and married again by 2005 He took me for everything I owned and I was diagnosed with Irritable Bowel syndrome and I moved back home. I purchased another home and got back on my feet. Started my business and was off to a great start. (Much Needed). 10/2005 I had a car accident that put me out of work till 1/2006. Then 11/2005 a deer jumped in front of the car I was borrowing while mine was in the shop. I thought all  of my lifes lessons were done.

Until April 17, 2007 that was the day I was told I have stage 3 Ovarian Cancer. It was found during a simple surgery to remove what they thought was a couple of adhesions. I have been strong enough to get back on my feet from every lesson God has given me.

This lesson is tough! I still believe I will be able to overcome this. Yet at times its so frightening!  They checked me at the half way mark of the treatments and found a thickening of my transverse colon. Possibly imflammation. I am now close to my last treatment day. Then they will check me again to see how I'm doing.  CA125, CAT & PET Scans never been a detector for the cancer.

I am still fighting and will continue to fight.

Being Single with a disease is not easy, but I feel I always have Guides to watch over me.

 

I try only except positive feedback and conversations with those who choose be in my life.

My life isn't all about Cancer. I have let go of negative people in my life. Thank God for bringing Positive People into my life & Thank God for my 2 Wonderful Children

 

It sure is a lonely world when your fighting a disease alone.

I don't  like putting others out, so I  try not to bother anyone.

 

Just believe and it will be! Just the faith of a mustard seed!

 
January 2, 2008, 6:26 am CST

I want some advises, please!

Hello, a couple months ago, I found that I had scoliosis. I had 60º, and I had to do a surgery to correct it. I'm fine, right now (after having long nights, with exausting pain), but I want some advises about things that I should do, or things that I shouldn't do... I'm only posting this, because I don't live in USA (I'm not english, sorry about the writting mistakes...), and where I live, there aren't many people with this problem. So I hope, that in such a large country like that, somebody could give me an advise!...

I'm very young, and I started my teen life, with a big scar in my back.... Thanks!

 
January 21, 2008, 2:15 pm CST

With Alot Of People It's Not Fought,It's Fight Everyday.......

   So where do I begin.I was veary young when I got pregnant.He was still born when I was 15 years old,1 week later I had a stroke.I couldn't use my right hand or talk right,it was a little town and they never thought to check me like I had a stroke,I was a kid 15 years old.A little over a year later I was getting my right hand back and speech,you would think nothing had happen.I started a job and everything seemed fine,untill I passed out at work,they thought I was working to much so they sent me home for rest,but I passed out at home,so then they thought they should do some test.That when I fould out I have Epilepsy and at the time they didn't know how I got it and I didn't either.I got pregnant but had a miscacarriage and then it was recurrent.

    In 1992 a Dr. Vt. sent me to NH after looking at my history,they did alot of test.That's when I fould out that I have Antiphospholipid Syndrome (APS) it's Autoimmune Diseases.I've got to take blood thiners for the rest of my life.I can get blood clots any where in my body,I'm at a greater risk for lupus.My body can be doing ok just the pains that I deal with every day ,but then BOW something happen's like the mild heart attack,pneumonia, or appendix out of the blue.I take alot of medicine's cuz of the differnt problems.I'm just thinkful that God gave me 3 girls that I LOVE.

 
February 12, 2008, 8:09 pm CST

Gorham's Disease or Vanishing Bone Disease

has anyone ever heard of this disease and how it can be treated?  it is an extremely rare disease and even what i read on the internet is not proven to treat this disease.  my father was diagnosed in 2005 after breaking his left arm.  the x-rays showed that he no longer had a left scapula...he was sent to a bone specialist who told me he thought my dad had cancer.  after 2-3 months of multiple tests, my dad was diagnosed not with cancer, but with gorham's disease.   he  had been receiving treatment at the university of chicago by reputable doctor's until a recent new injury....however, before treatment they failed to accurately scan my dad's bone density....this makes it questionable whether or not my dad's bones were getting better because of the treatment or not.  my dad's new injury was sustained after slipping and falling on ice in december of 2007.  that fall resulted in a new break of the left arm. decemver , 2007 x-rays show there hasn't been any new bone formation at the first break site and doctor's expect that the second break will also be a non-healing break.  although i have been able to convince my dad to move in with me and my family, i can't seem to convince him to go the mayo clinic in minnesota (they have treated at least 2 other patients with this diagnosis).  my father is a vietnam veteran and suffers from post traumatic stress disorder.  he received 2 purple hearts in vietnam and saw the hospital situations there first hand.  now he becomes extremely anxious before he goes to any doctor, hospital, or clinic, as sometimes they result in flashbacks.  so instead of treat his illness, i think he is in denial about having this disease.  i have recently come to understand that his left lung collapse in 2003 could be part of the disease process. fluid built up around his lung and collapsed it.  this is increasingly concerning for me because my dad wasdiagnosed with   pneumonia in dec of 2007 ( 2 rounds of antibiotics)...and then immediately with bronchitis...and although my dad's coughing has reduced some, he is still coughing a lot and unable to lie down and sleep for any length of time without having to incline to cough.  i am extremely concerned about him and i was hoping for some advice....thank you. 

 
February 16, 2008, 4:26 am CST

HIV/Hep C from blood transfusion

Hello everyone, My name is Sheila Pearce and I am dealing with the aftermath of a blood transfusion. In 1988, 6 weeks after I gave birth to my last son, I had to have some stomach repair work done. While in surgery I started hemmorging. The hospital gave me tainted blood. I have been dealing with the HIV ever since....I found out 2 years ago, I also had Hepatitis C type 1b, the Doctor says it is the worst one to have and the hardest to treat.  It was also in the same tainted blood. All I could think of was, what have I done to my husband and my 2 boys? Thank the Lord they were all fine. I have been living day to day taking pills for the HIV. I now am on a chemo-type drug therapy for the Hep C..(it is now active). I have to be on a year long treatment to try to kill the Hep C. There is only a 50% chance it will work on me since I am HIV positive too. I have decided to keep on a keeping on...that is all I can do. I try to relieve the stress of my health by writing poetry. I am a Published Poetic Artist. I write about the happenings in my life. I also write country music Lyrics. I just finished a song that is about a Grandmother witnessing the birth of her Grandson. I use my writing as therapy for me, and it helps to be able to get it off my chest without bringing everyone around me down. I refuse to do that. God has carried me for years on his shoulders, and continues doing so to this day. Since I was 18 years old..now 44...I have endured 31 operations. Anything from minor laser surgery for reoccuring pre-cancer cells to Hysterectomy, and most anything in between. I do not dwell on my bad health...I focus on the good things in my life like my kids, grandson, husband, my Mom (whom lives with us do to her bad health). I just want to share the thoughts I have on living life to the fullest...Like the song Tim McGraw sings...Live Like You Were Dying!...I am making it my GOAL to have Reba McEntire sing the song I wrote about a grandson being born. I have this dream and I do intend to fullfill it before God decides to call me home.  If anyone out there is dealing with the aftermath of HIV/HEP C from a blood transfusion...please let me know..I need people in my life dealing with the same issues as me.

                                                                                                                                   Love and Light, Sheila Pearce

 
February 16, 2008, 5:17 am CST

Dealing with HIV after denial

                            "I've Cried Alone"

                            By: Sheila Pearce

                      A Wife and Mother living with HIV

 

                        Sometimes in my heart I've felt

                         Like, how in the world do I go on?

                    Because I've kept this dark, dark secret

                        For seven years I've felt alone.

                      Sleepless nights I've had so many

                       Throughout so many lonely years,

                       I've huddled quietly in a corner

                        And shed silently many tears.

                         I've cried alone so often

                         This disease it has no cure,

                       The many times I've cried alone

                      It's sometimes so hard to endure.

                         I did though tell two people

                        My Mom, and husband Lynn,

                     I asked they keep it to themselves

                        Because I felt it was a sin.

                     All these years of showing laughter

                      Smiles and jokes and such,

                     While all this time inside my heart

                          I've cried so very much.

                      I'd talk to Mom and it would help

                        To keep me going strong, 

                     But as for Lynn, we didn't discuss it

                       And silently it would be gone.

                        But that's not true, the truth is

                     That it will always be stalking there,

                      Not talking about it made me feel

                       Like he really didn't care.

                     I know he did though, care that is

                      It was just hard for him to see,

                      How something so very deadly,

                    Could happen so viciously to me.

                      So I've quietly cried alone

                    Since it was so hard for him to bare,

                     The though of losing me, his wife

                      So talk about it, we didn't dare.

                    Oh joyous me, that's what I've shown

                    For seven lonely, heartbreaking years,

                               I've so often cried alone

                            Many cups full of my tears.

                       And also for the peace of mind

                           For my Mother Rosie Lee,

                        I kept to myself and cried alone

                           I didn't want my Mom to see.

                     This heartache pounding in my chest

                                 Trying to get out of me,

                              So quietly, I've cried alone

                          So there's peace to all, you see.

                       AIDS is a word that seemed so dirty

                              So many, many years ago,

                              I just couldn't talk about it

                          I couldn't let anyone else know.

                            But now I've found it easier

                          That filthy word it's a disease,

                        And now all of these years later

                 I've opened up, my mind is now at ease.

                         And now I DO NOT cry alone

                       I have my family and my friends,

                     Telling them and talking about it

                  Has helped my lonely heart to mend.

                           Although I am still facing

                             A fate that is unknown,

                         But now it is much easier

              With all the kindness they all have shown.

                       I NO LONGER CRY ALONE!

                          Written October 3, 1999

 

 

 
February 16, 2008, 5:49 am CST

HIV/Aids want get me down!

"Aids Want Get Me Down"

By: Sheila Pearce

 

I am a wife, and a mother of two,

I'm living with Aids, what else do I do?

Curl up in a ball, and forget it is there?

Thats what I did, for seven long years.

It was definetly, the wrong thing for me,

For now I have Aids, and no longer HIV.

But now I'm on meds, it's under control,

The Doc said I'd live to see my boys grow.

As long as I take them the rest of my life,

I can continue being a Mom and a wife.

I've lived with this now, for many years,

Hiding my fear, and hiding my tears.

I just keep on living everyday as before,

Smiling and joking, and doing Mom's chores.

It want get me down, I am willing to fight,

For a happy future, with stars shining bright.

This life that I'm living, means alot,

Whether I have the Aids disease, or not!

I have a husband, and two teenage boys,

To keep me busy and to give my life joy.

  writen: November 17, 2001

 
April 3, 2008, 12:54 pm CDT

I've been battling and winning against heart failure, AFib, MCS and Autoimmune for decades!

 I have been battling Heart Failure and Atrial Fibrillation, complicated with Multiple Chemical Sensitivities, Insulin Resistance, Asthma and Immune System Problems for over 20 years. My Immune System is so sensitive that many normal things trigger my blood pressure to go much  higher, and/or trigger nasty heart rhythm irregularities, and/or cause breathing problems, and/or many other nasty health problems.
 
During 1998 my health and symptoms started to get much worse. I started taking my blood pressure at home and found that my blood pressure was very high almost all day long. I learned that blood pressure was normally lowest during the earlier part of the day, and increased throughout the afternoon and evening, and then usually went lower during the night, but my blood pressure soared at night and stayed that way all night long.
 
From 1998, until the present, I have taken my blood pressure  over 24,000 times , or about  seven times per day . I keep notes each day on what helps to lower my blood pressure, and what causes increases in my blood pressure and what causes increases in my other nasty symptoms, such as difficult breathing, chest pains, fatigue, etc. I store all my bp readings in a database and do reports and charts by hour, by day, by week, by month and by year. As a result I have greatly lowered my blood pressure and significantly improved my chances of surviving the nasty diseases that I am fighting, while having to take much less medication.
 
 In  1998 , based on 1016 bp readings, I had an average blood pressure of  152 over 97 ! That means that, every hour, every day, every week, my blood pressure consistently stayed that high.No wonder why I was getting much worse!
 
I was able to lower the average to  146 over 92  during  1999 , based on 3599 readings but I was still getting worse. Not only was my average blood pressure much too high making my health worse, but my health also  continued to deteriorate because of the harmful effects of excess body hormones, caused by miscellaneous triggers and inappropriate diet. Fortunately, I was slowly and painfully discovering the "triggers", and bad diet decisions, that were causing increases in my blood pressure and worsening of my symptoms. Slowly over the years, I learned more about the various, complex triggers.
 
Starting in  2005 , I began a small meal, frequent eating, low calorie diet, using only Low Glycemic Carbs. In  2005  my blood pressure average for the entire year was  139 over 86  for the full year, based on 2526 readings. In  2006 , my blood pressure was 136 over 79  based on 3269 readings. In  2007 , 126 over 74  based on 2720 readings. So far for  2008 , my average daily blood pressure has been 124 over 72 , all day long, hour after hour, week after week, based on 864 readings.
 
I have learned a lot about blood pressure, but more important, I have learned about the "triggers" that not only cause increases in blood pressure, but also effect heart rhythm. These triggers cause an over-reaction of the immune system, which causes overproduction of hormones by the NeuroHormonal System.
 
When hormones, such as Insulin and those from the adrenal glands, are produced in excess, they cause havoc throughout the body and attack all organs and glands, causing diseases like Heart Failure, Atrial Fibrillation, Heart Rhythm Disorders, Fibromyalgia, Chronic Fatigue Syndrome, MS, Lupus, MCS, etc., to get progressively worse.
 
Body hormones are wonderful chemicals, but they are damaging when over-produced. Most medications targeting heart disease and high blood pressure attempt to block or inhibit the Neurohormonal System. Ace  Inhibitors , Beta  Blockers , Calcium Channel  Blockers , Renin  Inhibitors , etc., all attempt to  block or inhibit  the overproduction of hormones, hence their names. They are not called "blockers" or "inhibitors" for no reason.

If a patient knows how to avoid the "triggers" that cause their Neurohormonal Systems to over-produce hormones; and eat a healthy diet;  and exercise; and take appropriate medications at the appropriate times, then that patient has a much better chance of survival and a better quality of life, and might be able to take much less blocker or inhibitor medications.
 
The key to my discoveries was finding out about NeuroHormonal "triggers". It took me years, but as a result I am living a reasonable quality of life, despite my significant, daily disease burden.
 
The medical world claims that it cannot find the reasons for most cases of high blood pressure, or the over-reaction of the NeuroHormonal system. As difficult as it is to believe, I have found out! During my 20+ year battle with heart failure, high blood pressure and other diseases, I have made major discoveries of the "triggers" which make heart failure progressively worse, cause high blood pressure, and negatively effect autoimmune diseases. My theories would make sense to someone with a pharmaceutical background, who is basically familiar with how heart medications work, but probably not to most doctors.
 
 If you find out your triggers, and avoid them, and then eat a diet of small, frequent, low calories meals, take the appropriate medications at the best dosages and at the best time of the day, and exercise, the result will be significant improvements for people suffering from Heart Failure, chronically high blood pressure, and AutoImmune diseases.

The reason for this post is to empower those with chronic diseases, so that you can make significant improvements in your health  through diet , through  exercise and so that you will know to look for the " triggers " that negatively effect your health, and avoid those triggers!
 
I've got about nine pounds of notes and records, taken during the time I was learning about NeuroHormonal "triggers", but, at my age, still fighting heart failure, and because of the medications that I am on, I would never have the energy, or even be able to translate that much data into anything meaningful that someone else could read or understand. However, if I can find the triggers that made my disease progressively worse, then anyone can find their triggers. The important thing is that you know that these triggers exist, and by finding them, and avoiding them, you can make a big difference in your health!
 
 
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