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Topic : When a Family Member Gets Sick

Number of Replies: 305
New Messages This Week: 0
Last Reply On:
Created on : Thursday, July 07, 2005, 09:07:23 am
Author : dataimport

Nothing makes one feel more helpless than watching a child, spouse, or parent suffering. We understand. How do you cope with illness in your family?


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March 10, 2006, 8:53 pm CST

Narcolepsy

Quote From: creative6

HI, if there is anyone out there who reads this i would love to hear back from you on this subject of Narcolepsy. My daughter is 14 years old and has been told she has Narcolepsy. We have been through 2 sleep studies and many doctors to confirm this. She also has the cataplexy. She has zero self esteem. Wishes she could did in a car accident because she see's NO hope for her future. It is so hard to hear her talk like this. It breaks my heart. She often speaks of just wanting to die, doesnt really have many friends, not even one close friend due to the fact that she cant stay awake to have someone over. She struggles to get thru school. Comes home and sleeps thru dinner, i have to wake her up so she can eat something and do her homework. Believe it or not inspite of this she works very hard at her grades and even got a 4.0 this last trimester. We have tried diff. meds and we cant find anything that she doesnt have a strong reaction to. Is there any advice to help her with someone who suffers with Narcolepsy? She wont laugh because she doesn't want to fall down in front of her classmates, she is always so sad.   I have called all over our state in Oregon to find support groups but we have none.   Thank you for your time    

Have you checked into www.talkaboutsleep.com? Your story sounds familiar, so I think you might have visited the website.  But if not, please check it out.  There is a plethora of useful information on there including Narcolepsy message boards and chat rooms.  Maybe you and your daughter,  can visit it together.  It would be extremely helpful for her to "talk" with others who are in a similar boat.  I have Narcolepsy and it has helped me tremendously!  Hope you can check it out.  Good luck!  

 
March 11, 2006, 7:47 am CST

narcolepsy

Quote From: creative6

HI, if there is anyone out there who reads this i would love to hear back from you on this subject of Narcolepsy. My daughter is 14 years old and has been told she has Narcolepsy. We have been through 2 sleep studies and many doctors to confirm this. She also has the cataplexy. She has zero self esteem. Wishes she could did in a car accident because she see's NO hope for her future. It is so hard to hear her talk like this. It breaks my heart. She often speaks of just wanting to die, doesnt really have many friends, not even one close friend due to the fact that she cant stay awake to have someone over. She struggles to get thru school. Comes home and sleeps thru dinner, i have to wake her up so she can eat something and do her homework. Believe it or not inspite of this she works very hard at her grades and even got a 4.0 this last trimester. We have tried diff. meds and we cant find anything that she doesnt have a strong reaction to. Is there any advice to help her with someone who suffers with Narcolepsy? She wont laugh because she doesn't want to fall down in front of her classmates, she is always so sad.   I have called all over our state in Oregon to find support groups but we have none.   Thank you for your time    
 Hi creative. The last message you recieved was by one called sleepyfrog. I am a member of the same message board as sleepyfrog. Talk about sleep is a great place to visit! For those old and young with all sleep disorders and for those that want to learn more or just ask question! This message board AND chat room has helped me come out of 15 yrs of denial! I also have Narcolepsy with cataplexy and a few other things! I started having signs when I was about 15 but I did not get any answers until I was 20. Narcolepsy was not very well known at that time!  Visit and join our sit and you will see what bonding really means! All of these folks on this site are very warm hearted People and Are the ONLY ones that know what your daughter is going through!!!! talk about sleep also has a message board and chat fot Nacoleptic under 30....This will help her alot with her self esteme! One piece of advice from one with Narcolepsy. Have her do her research. Inorder to understand herself she must first understand her condition! Denial is always a stage we all go through ( iwent through it for 15 yrs) So the sooner she faces this The sooner her life will become less complex! I wish you the best of luck and hope to see you on our site....Noddingmom
 
March 11, 2006, 4:28 pm CST

I get it

Quote From: creative6

HI, if there is anyone out there who reads this i would love to hear back from you on this subject of Narcolepsy. My daughter is 14 years old and has been told she has Narcolepsy. We have been through 2 sleep studies and many doctors to confirm this. She also has the cataplexy. She has zero self esteem. Wishes she could did in a car accident because she see's NO hope for her future. It is so hard to hear her talk like this. It breaks my heart. She often speaks of just wanting to die, doesnt really have many friends, not even one close friend due to the fact that she cant stay awake to have someone over. She struggles to get thru school. Comes home and sleeps thru dinner, i have to wake her up so she can eat something and do her homework. Believe it or not inspite of this she works very hard at her grades and even got a 4.0 this last trimester. We have tried diff. meds and we cant find anything that she doesnt have a strong reaction to. Is there any advice to help her with someone who suffers with Narcolepsy? She wont laugh because she doesn't want to fall down in front of her classmates, she is always so sad.   I have called all over our state in Oregon to find support groups but we have none.   Thank you for your time    

Hi...if you or your daughter want to communicate with others with Narcolepsy please visit www.talkaboutsleep.com there is an under 30 section and regular both welcome all ages though.  

  

Narcoleptic Network runs the above and is a great source of information and understanding. I sincerely hope that Dr. Phil considers a show especially since March 27-April 2 is Sleep Awareness Week. 

  

Rio~ 

 
March 15, 2006, 8:43 pm CST

lots of web sites to help her

Quote From: mbush40

I am th e mother of two kids. M y first born who is now 16 has been suffering from illness since she was three months old, at the age of 10 I was told she has ULCERATIVE COLITIS and  JUVENILE ARTHRITIC. This child has been in and out of the hospital than I can say, still she is happily going her way  I think I an the one who is more worried, I think i have cried all the tears there is sometime I just don't know how to feel. She just turned 16 in 02-06  and could not have a sweet 16 party because she was in so mush pain that whole month. Like all mothers out there with a sick child keep the faith don't give up there is help out there.
 I have oasteo arthritis x 30 years. there are several sites on yahoo and other web pages for your daughter to converse with other JA persons.
my son, my first born, was born with VATRE syndrome, which is very rare.  he stopped breathing twice, after different operations, and his heart had to be revived once in another post surgery event. he had colostomies and nefrostomies on the same side of his body.
I remember on one occasion hearing that laughter that makes a parent wonder what he might be up to, so I peaked into his room. there he was standing up in his crib, with his colostomy bag hanging off his right arm and swinging through the air. he had covered the walls and furniture already and the bag was empty. I fell to floor in laughter.
 they break our hearts with thier suffering but give us stories to tell that other people can only imagine, sometimes in horror, but they fail to see how we can not only cope, but have fun too.
 
March 19, 2006, 11:30 pm CST

mom of 2 sick

Wow, it took a while to read some of the messages, it is good to see a place where stories can be told. I have learned to cope with chronic illnesss myself as well as in both my kids. The up and down rollercoaster of seeing doctors and at times wondering if I am partially insane - looking for a "zebra" instead of a "horse"when it may be something normal - only to find out it was a zebra. For those that may not have heard that term - it's a medical description for someone looking for rare diseases (zebra) before they look at the common diseases (horse). My story is that I have had Type 1 diabetes for 20 years, have some painful neuropathy from diabetes, am hypothyroid and need B12 injections, and depression (treated), my girl has Aspergers syndrome (a form of autism), hypothyroidism, celiac sprue, and heart damage from Kawasaki disease. My son has Type 1 diabetes and celiac sprue. The kicker is that they are not even teenagers yet! The medical term for the cluster of autoimmune mediated disease is : Polyendocrine failure, since it has occurred in more than one family member. 

There were times where I cried and pounded my pillow and resented my spouse for not being supporting in the way I thought he should be... only to realize that he is passive aggressive (arrrghhh!) so after reading lots (educating yourself is a great tool) I learned to rely on my girlfriends for the the hugs and the venting sessions.  

I spent some time in self pity mode til I discovered that it was much better to have fun. I made my son a dartboard out of corkboard so he could dart the needles that hurt (they dont all hurt).....then he was giggling about scoring big instead of focused on the frustration of needing insulin injections... soon I was using the dart board too! 

Find ways to release the pain or sad feelings ...in whatever way suits your personality. 

Embrace your new knowledge - I never knew I could cook gluten free or read labels as I do now. 

Embrace your instinct - if you think somethig is wrong and it is out of the ordinary - pursue it and ignore the shaking heads. I had to take my daughter back to a doctor 3 times in 10 days, I insisted on a referral - to find out - I WAS right, it was not a bad virus - but a devastating vasculitis that required treatment and monitoring by a cardiologist (Kawasaki). ...or when I kept bringing her in for evaluations for migraines, stomach pain, backaches - to finally find out she had celiac sprue (who knew that an intestinal problems can cause migraines!)....  

Cry when you need to....but laugh when you can. 

Lean on friends but remember to be there for them too- it is hard for someone to support you when they feel it is not reciprocated. They have problems too. Tell them the happy stories along with the frustrations. 

I learned these tricks over time but not before I alienated some friends and family members. 

Yes, I still have bad days and my son would like to smash his syringes into the pavement but we dont dwell on that .... mind you I did let him smash a syringe once with a brick ... 

I try not to focus on the "what ifs" (what other disease will they develop)- the complications that may be down the road (we havent got to that intersection yet with the kids)...but I am aware of the potential for further immune mediated disease and I will be there to hug my son should he develop any complications from diabetes.  

A note to others - there are differences between Type 1 and Type 2 diabetes. My son will not be able to take pills when he is older - you wont believe how many adults have told him that! He did not get it from eating too much candy (and neither did I). Children and teenagers with diabetes have difficulty controlling blood sugars for a number of reasons (hormone changes, growth, stress)... so please dont shame him or make him feel he is entirely responsible for high blood sugars.  How is he supposed to enjoy a special occasion with everyone asking him "what did you eat to make it so high?, or should you have that?" 

  

  

  

  

  

 
March 20, 2006, 4:54 pm CST

Sick of being sick

Over 3 years ago I started itching and it hasn't stopped. First it was itching and now it is blisters and sores and open wounds. I have been on so many medications  from perscribed to natural including cleanses to colonics to stop the itching and the sores and so far nothing has helped. Even my diet. Stopped sugar, flour, wheat on and on. Allery tests, blood work you name it. I went as far as Mexico to try the Dr.'s there and still nothing has helped. Most Dr.'s are saying that I am dellusional. 

I even offered to take medication for dellusions and they would not give it to me. As soon as they see the blisters and sores they back away and tell me to take benydryl. Which I have. One Dr. gave me a perscrption for heart burn which I don't have. Another told me to get a pet. 

About a year ago I was diagnosed with parasites and put on 2000 mg of anti-biotics which nearly killed me and I have been doing parasite cleanses. 

Early 90's I was diagnosed with fibromyalgia which for the most part I have been dealing with ok up until 2 years ago when my Dr. gave me a duragesic patch which leaked and I was without oxygen for quite some time until I was revived and have problems on several levels which are getting better with hard work. Mostly short term memory loss and forgetting things. 

I have asked Dr.'s to please test me for lyme and they wouldn't so I went through another facility outside my state and the results were positive and now I cannot afford to be treated from that facility. I have spent so much money on this. I took the results to my Dr. and she told me to find a shrink. Which I am ok with only I need help with mt medical. 

I have been tested for aids/hiv and it was negative.  

My symtoms mimick the same as the symptoms as morgellons. I am not saying that I have it but it sounds the same. They do not know what it is or how to cure it. 

I have crazy stamped all over my medical records and no Dr. will take me serious. If I were crazy would I wonder? 

I am beginning to wonder.  

The thing about it is, is I am not the only one with these symptoms.  

Itching, blisters, open wounds, crystal like substance coming from my skin, eyes, ears, nose. 

Black specks,creepy crawly sensations. It's not good. 

I am losing faith and hope fast. 

Even though I try not to complain to my family and friends I am pushing them all away.  

In a way I do not blame them. I am sure that they are sick of it maybe even more than I am. 

My heart brakes regarding my Grandkids. 

I started to stay away because I was afraid that I would give them is awful wharever it is and now they are so confused and our relationship which used to be close is strained and almost non exitstant. I used to be the fun Grannny and now I am the cranky and sick Grandma. I am only 47. 

I even make myself sick to even write this. I am not looking for sympathy I just want to get well. 

I am of no good to anyone like this. 

Has anybody out there heard of Morgellons or has had any of these symptoms? 

God bless you all.                                          Laur 

  

 
March 20, 2006, 5:14 pm CST

NO BREAST IMPLANT IS SAFE! A MESSAGE IN TRUTH AND LOVE

  NO BREAST IMPLANT IS SAFE!   HI THERE,
MY NAME IS CINDY.   I AM A CHRISTIAN,A SINGLE MOM OF 3 BEAUTIFUL GIRLS, AND A VICTIM FIGHTING TO SURVIVE!   I AM JUST ONE OF LITERALLY HUNDREDS OF THOUSANDS OF WOMEN,AND COUNTING ;
DEATHLY ILL FROM SILICONE POISONING;SILICONE ASSOCIATED DISEASES.   I USED TO HAVE A BUSINESS IN HOME HEALTH CARE.
I STILL HELP,LOVE,SERVE OTHERS MUCH LIKE I USED TO,JUST NOW IN A WHOLE NEW WAY AS I AM FORCED TO BE IN BED, I REFUSE TO LIVE OR DIE FROM SILICONE POISONING ALL IN VAIN;ALL FOR NOTHING,I AM CHOOSING TO MAKE A DIFFERENCE
FOR THE BETTER IN THE HEALTH AND LIVES OF OTHERS.   VIA THE INTERNET MOSTLY,
I HELP,LOVE,SERVE MANY YOUNG GIRLS AND WOMEN  IN MANY,MANY WAYS WHO HAVE,HAD,
OR ARE ACTUALLY CONSIDERING GETTING TOXIC TICKING TIMEBOMBS,
BETTER KNOWN AS BREAST IMPLANTS!   GETTING OR HAVING BREAST IMPLANTS IS JUST LIKE PLAYING
RUSSIAN ROULETTE,
WITH YOUR PRECIOUS;PRICELESS
HEALTH AND LIFE,ITS JUST NOT WORTH IT.   WHAT HAS SADLY HAPPENED TO ME,
TOO MANY OTHERS, SADLY CONTINUES TO HAPPEN TO TOO MANY OTHERS,AND COULD JUST AS EASILY HAPPEN TO YOU TOO,AND OR SOMEONE YOU KNOW.
I DO NOT WANT IT TO BE TOO LATE FOR YOU AS IT SADLY IS FOR ME
AND TOO MANY!   UNDERSTAND,
ANY ONE WITH BREAST IMPLANTS COULD EASILY GET SICK,OR BE SICK AND NOT EVEN REALIZE/KNOW IT.  YOU CAN FEEL HEALTHY ,BUT ACTUALLY BE GETTING ILL,YOU MAY OR MAY NOT HAVE SIGNS AND BE GETTING/BE ILL. YOU MAY THINK THAT MINOR ILLNESSES ARE JUST THAT,BUT THEY ARE NOT,IT IS VERY MAJOR WHAT IS HAPPENING,AS I SAID YOU CAN FEEL HEALTHY AND ACTUALLY BE SICK,GETTING SICKER,
WHETHER YOU REALIZE IT OR NOT.
ONCE THE DAMAGE IS PERMANANT,
ITS JUST THAT,PERMANANT AND
YOU ONLY GET SICKER AND SICKER,
AND SICKER,AND SICKER STILL.
HAVING TO SEE SO MANY DOCTORS AND SPECIALISTS,ONLY YOU ARE TOO WEAK,SICK,AND IN PAIN TO GO.
HAVING TO GET SO MANY SURGERIES,AND RUNNING OUT OF ORGANS. NOT TO MENTION                    
,NONE OF THIS HELPS,
BUT MUST BE DONE.   ITS A HELLISH NIGHTMARE,
ONLY YOU CAN'T WAKE UP,
ITS UNIMAGINABLE,BUT ALL TOO REAL. TO PUT IT MILDLY IMAGINE HAVING THE WORST CASE OF THE FLU,EVERY SINGLE DAY OF YOUR LIFE!
PAIN SO EXCRUCIATING,CONSTANT,
UNBEARABLE,UNMANAGEABLE BY EVEN THE STRONGEST PAIN  MEDICATIONS, ALAWAYS BEING SO WEAK YOU NEED MUCH HELP TO PREFORM THE SIMPLEST OF TASKS,SUCH AS GOING TO THE BATHROOM,SHOWER,DRESSING,
EATING,AND SO ON.
TRY AND IMAGINE JUST CLOTHING,SHEETS,PILLOWS TOUCHING YOU,TREMENDOUSLY TORMENTS YOU,IMAGINE GETTING,HAVING SEVERE ATTACKS WHERE YOU CAN NOT EVEN WALK OR TALK AND SO ON. SEVERE TREMOR ;SHAKING,BODY SPASMS ;
FALLING DOWN,PARALYSIS,BLINDNESS,
HAVIING TO BE IN A WHEEL CHAIR BUT TOO SICK,WEAK,PAIN TO EVEN BE IN A WHEEL CHAIR.
IMAGINE ONLY GETTING WORSE,
BRAIN DAMAGE,TUMORS,CANCERS,
CONNCTIVE TISSUE DISEASE,LIKE LUPUS AND SO ON.
IMAGINE YOUR BONES,MUSCLES,SKIN TISSUE,ORGANS EVERYTHING HURTING SO EXCRUCIATING,
YOU WISH ,HOPE,PRAY JESUS WOULD TAKE YOU HOME,EVEN THOUGH  MORE THAN ANYTHING YOU  JUST WANT TO REALLY STAY AND RAISE YOUR CHILDREN AND HELP,LOVE,SERVE,OTHERS,
 THOUGH YOU CAN NOT EVEN TAKE CARE OF OR HELP YOURSELF.   THIS COULD EASILY BE YOU,
HOW LUCKY DO YOU FEEL?
DO YOU REALLY FEEL LUCKY ENOUGH THAT YOU ARE WILLING TO RISK YOUR PRECIOUS;PRICELESS HEALTH AND LIFE,ALL FOR A SET OF BREASTS THAT ARE NOTHING MORE THAN TOXIC TICKING TIMEBOMBS!
WHO THE HELL CARES HOW YOU LOOK WHEN YOU FEEL 500 YEARS OLD! 
 AND YOU HAVE TO TELL YOUR CHILDREN YOU MAY DIE,OR ARE DYING? OR OTHER LOVED ONES?
AS YOU HOPE,PRAY,FIGHT TO LIVE!
I NEVER HAD ANY O NE TELL ME,
THE TRUTH,THAT NO BREAST IMPLANT IS SAFE,TRUST ME I WOULD HAVE LISTENED.
YOU HOWEVEVER DO HAVE SOMEONE TELLING YOU THE TRUTH IN LOVE,I AM YOUR FRIEND,I CARE ABOUT AND LOVE YOU,
NO BREAST IMPLANT IS SAFE!
SEE,
NO MATTER WHAT YOU WILL REMEMBER THIS CONVERSATION
I  ONLY HOPE AND PRAY ITS ON A HEALTHY NOTE!
I AM HAPPY  TO BE HERE ,
AS LIFE IS ALL ABOUT LOVE!
HELPING,LOVING,SERVING OTHERS!    I KNOW BY COMING HERE
TELLING AND SHOWING YOU
 AND MANY OTHERS
THE TRUTH IN LOVE ,
YOU WILL  DO THE SAME !
 
YOUR HEALTH AND LIFE IS PRECIOUS AND PRICELESS!   NO BREAST IMPLANT IS SAFE!   IF IT WERE NOT FOR GOD;LORD;JESUS I WOULD NOT BE HERE. LIFE IS ALL ABOUT LOVE, I AM SO THANKFUL AND GRATEFUL FOR LOVE!     AS I SAID,I AM DEATHLY ILL, AND NEED TO GO TO THE EMERGENCY ROOM/HOSPITAL YET,AGAIN. I WENT INTO NEAR TOTAL KIDNEY FAILURE JUST RECENTLY, I ASK THAT YOU PLEASE PRAY FOR ME,MY BELOVED DAUGHTERS! THANK YOU AND GOD BLESS YOU!   PLEASE READ MY POSTS HERE AT DR. PHILS COSMETIC MESSAGE BOARDS   AND PLEASE
 CHECK OUT WEBSITES   SILICONE HOLOCAUST   DR. HENRY JENNY SILLY-CONES COMMENTS   NATIONAL INSTITUTE OF CANCER
SPELLS OUT RISKS OF BREAST IMPLANTS   NO BREAST IMPLANT IS SAFE!   NOW YOU KNOW ,I TOLD YOU SO!
IN TRUTH AND LOVE AND WARRANTED FEAR FOR YOUR
PRECIOUS;PRICELESS HEALTH AND LIFE,AND  YOUR PRECIOUS;PRICELESS FAMILY.
 
March 21, 2006, 8:34 am CST

morgellons

Quote From: l41cheetah

Over 3 years ago I started itching and it hasn't stopped. First it was itching and now it is blisters and sores and open wounds. I have been on so many medications  from perscribed to natural including cleanses to colonics to stop the itching and the sores and so far nothing has helped. Even my diet. Stopped sugar, flour, wheat on and on. Allery tests, blood work you name it. I went as far as Mexico to try the Dr.'s there and still nothing has helped. Most Dr.'s are saying that I am dellusional. 

I even offered to take medication for dellusions and they would not give it to me. As soon as they see the blisters and sores they back away and tell me to take benydryl. Which I have. One Dr. gave me a perscrption for heart burn which I don't have. Another told me to get a pet. 

About a year ago I was diagnosed with parasites and put on 2000 mg of anti-biotics which nearly killed me and I have been doing parasite cleanses. 

Early 90's I was diagnosed with fibromyalgia which for the most part I have been dealing with ok up until 2 years ago when my Dr. gave me a duragesic patch which leaked and I was without oxygen for quite some time until I was revived and have problems on several levels which are getting better with hard work. Mostly short term memory loss and forgetting things. 

I have asked Dr.'s to please test me for lyme and they wouldn't so I went through another facility outside my state and the results were positive and now I cannot afford to be treated from that facility. I have spent so much money on this. I took the results to my Dr. and she told me to find a shrink. Which I am ok with only I need help with mt medical. 

I have been tested for aids/hiv and it was negative.  

My symtoms mimick the same as the symptoms as morgellons. I am not saying that I have it but it sounds the same. They do not know what it is or how to cure it. 

I have crazy stamped all over my medical records and no Dr. will take me serious. If I were crazy would I wonder? 

I am beginning to wonder.  

The thing about it is, is I am not the only one with these symptoms.  

Itching, blisters, open wounds, crystal like substance coming from my skin, eyes, ears, nose. 

Black specks,creepy crawly sensations. It's not good. 

I am losing faith and hope fast. 

Even though I try not to complain to my family and friends I am pushing them all away.  

In a way I do not blame them. I am sure that they are sick of it maybe even more than I am. 

My heart brakes regarding my Grandkids. 

I started to stay away because I was afraid that I would give them is awful wharever it is and now they are so confused and our relationship which used to be close is strained and almost non exitstant. I used to be the fun Grannny and now I am the cranky and sick Grandma. I am only 47. 

I even make myself sick to even write this. I am not looking for sympathy I just want to get well. 

I am of no good to anyone like this. 

Has anybody out there heard of Morgellons or has had any of these symptoms? 

God bless you all.                                          Laur 

  

Has anyone investiagted for urticarial vasculitis? 

  • Patients present with an urticarial eruption, often accompanied by a painful or burning sensation.
    • Lesions are generalized wheals or erythematous plaques, occasionally with central clearing, lasting for more than 24 hours in a fixed location (in contrast to urticaria, which resolves in minutes to hours or migrates continually). Petechiae may be noted within the lesions, and they may resolve with ecchymoses or postinflammatory hyperpigmentation.
    • Patients may have photosensitivity, lymphadenopathy, arthralgia, angioedema, fever, abdominal pain, dyspnea, and pleural and pericardial effusions.

more info at: http://www.emedicine.com/derm/topic449.htm 

  

A rheumatologist is the one who would be able to investigate autoimmune conditions causing skin eruptions.  

  

I understand the frustration of repeat visits, and no answers. Keep pursuing it. Celiac disease can also present with skin eruptions - going gluten free is difficult without guidance and improvement may not be see for several weeks. Even traces of gluten can keep symptoms coming. if you want to know how strict a gluten free diet is - we cannot even use the same toaster that has had wheat bread toasted in it - if my daughter even gets a crumb of gluten, she will get abdominal pain, ecxema and migraines. I say this because you mentioned excluding wheat - but gluten is in a number of products (malt flavor, wheat filler etc). Celaic disease is known as the "great imitator" as clincial signs vary from person to person - the average time between seeking help and diagnosis is 10 years. My daughter had a blood test that was weakly positive and the GI doctor doubted the intestinal biopsy (the only way to KNOW for sure) would show anything.... but she had significant damage to her gut and was definitely positive. Thank goodness the doctors DID pursue it with biopsy, otherwise I would still have a sick little girl 

 
March 21, 2006, 4:08 pm CST

Diabetic Neuropathy

 Hi kmmommy2 and other interested persons : 

  

 The Feb 06 issue of Dr. Julian Whitaker's "Health & Healing" Newsletter had an article on 

 "Overcoming Diabetic Neuropathy", which featured the experience of Bill Bellomy, who saw a 

 dramatic improvement when he started taking 600 mg daily, in divided doses, of alpha lipoic acid. 

 Eventually, he also had EECP, HBOT, chelation & Anodyne therapy. Bill says now he takes no 

 prescription medications for his Diabetes. For a similar-minded physician near you, check out the 

 Doctor Search at www.acam.org . 

 
March 22, 2006, 10:56 am CST

wow I can't even imagine what you are going through

Quote From: kmmommy2

Wow, it took a while to read some of the messages, it is good to see a place where stories can be told. I have learned to cope with chronic illnesss myself as well as in both my kids. The up and down rollercoaster of seeing doctors and at times wondering if I am partially insane - looking for a "zebra" instead of a "horse"when it may be something normal - only to find out it was a zebra. For those that may not have heard that term - it's a medical description for someone looking for rare diseases (zebra) before they look at the common diseases (horse). My story is that I have had Type 1 diabetes for 20 years, have some painful neuropathy from diabetes, am hypothyroid and need B12 injections, and depression (treated), my girl has Aspergers syndrome (a form of autism), hypothyroidism, celiac sprue, and heart damage from Kawasaki disease. My son has Type 1 diabetes and celiac sprue. The kicker is that they are not even teenagers yet! The medical term for the cluster of autoimmune mediated disease is : Polyendocrine failure, since it has occurred in more than one family member. 

There were times where I cried and pounded my pillow and resented my spouse for not being supporting in the way I thought he should be... only to realize that he is passive aggressive (arrrghhh!) so after reading lots (educating yourself is a great tool) I learned to rely on my girlfriends for the the hugs and the venting sessions.  

I spent some time in self pity mode til I discovered that it was much better to have fun. I made my son a dartboard out of corkboard so he could dart the needles that hurt (they dont all hurt).....then he was giggling about scoring big instead of focused on the frustration of needing insulin injections... soon I was using the dart board too! 

Find ways to release the pain or sad feelings ...in whatever way suits your personality. 

Embrace your new knowledge - I never knew I could cook gluten free or read labels as I do now. 

Embrace your instinct - if you think somethig is wrong and it is out of the ordinary - pursue it and ignore the shaking heads. I had to take my daughter back to a doctor 3 times in 10 days, I insisted on a referral - to find out - I WAS right, it was not a bad virus - but a devastating vasculitis that required treatment and monitoring by a cardiologist (Kawasaki). ...or when I kept bringing her in for evaluations for migraines, stomach pain, backaches - to finally find out she had celiac sprue (who knew that an intestinal problems can cause migraines!)....  

Cry when you need to....but laugh when you can. 

Lean on friends but remember to be there for them too- it is hard for someone to support you when they feel it is not reciprocated. They have problems too. Tell them the happy stories along with the frustrations. 

I learned these tricks over time but not before I alienated some friends and family members. 

Yes, I still have bad days and my son would like to smash his syringes into the pavement but we dont dwell on that .... mind you I did let him smash a syringe once with a brick ... 

I try not to focus on the "what ifs" (what other disease will they develop)- the complications that may be down the road (we havent got to that intersection yet with the kids)...but I am aware of the potential for further immune mediated disease and I will be there to hug my son should he develop any complications from diabetes.  

A note to others - there are differences between Type 1 and Type 2 diabetes. My son will not be able to take pills when he is older - you wont believe how many adults have told him that! He did not get it from eating too much candy (and neither did I). Children and teenagers with diabetes have difficulty controlling blood sugars for a number of reasons (hormone changes, growth, stress)... so please dont shame him or make him feel he is entirely responsible for high blood sugars.  How is he supposed to enjoy a special occasion with everyone asking him "what did you eat to make it so high?, or should you have that?" 

  

  

  

  

  

wow.  

  

from reading your story I know that I have to be careful because I believe that diabetes runs in my family my aunt has it. I don't know what type though but I was introduced to a cleanse that we are trying to get her on that has been helping people with diabetes to lower there insulin. I have been talking to a top nutritionist for the last couple of days and he is the one that introduced me to this cleanse. I don't know if you are at all interested in finding out about it but I would like to know more about your story. if you want you can email me I can also if you want to arrange for him to talk to you if you are at all interested. my email address is darin7@telus.net good luck and keep that chin up. 

  

Thumpalina 

 
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