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Topic : How I Fought My Illness

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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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sis802
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December 15, 2005, 9:28 pm PST

hi!!!!

Quote From: boxblonde

i have lympostic colitis , thank god I'm not alone in this , not to many people understand,I've had it now 3 years , went into remission for a year , then 6 months shorter all the time, as of right now there trying to get me into remission , i was on steroids for four weeks , didn't work so I'm on them again , at one time i went ten long months with know medical, help the diarrhea that long my liver an kidneys almost shut down, we have know medical help an i owe six thousand dollars, i usually don't go any were , i wont were a diaper so i stay home, i cant work, plus i have other heath problems , I'm so glad we can talk about this , o an I'm 46 lol,Roxie
You are definetly not alone in this!! It is very tough learning to deal with these diseases--heck its even life altering. But, there are ways. I just got through with my latest round of steroids--I really hope that I don't have to go back on them for a very long time, we'll see what happens. Anytime you need someone to talk too, I'm here. I know of a couple of really informative websites on the disease if you ever are interested. I can give you my e-mail address too!! Best Wishes!!
 
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timportant
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December 16, 2005, 10:55 am PST

Finally an article about MS

Quote From: librajen

After the birth of my son, when he was 12 weeks old- I was diagnosed with MS.  I went through some dark days, with a tiny baby, having to go on disability from my job, and having to take some hideous daily medications. 

  

But, that was 6 years ago.  I am blessed to stay home with my son and get paid from my disability.  I am lucky to get all the hideous medications paid for - $2000 / month - (yay Canada!).  I am lucky to have friends and family who understand and who are there for me.  I am lucky to have a husband who is my best friend, and never thought twice about the MS.  "In sickness and in health" are part of our wedding vows. 

  

I sometimes have trouble walking, seeing, controlling spasms.  I have trouble keeping up with my son.  But I am blessed and so lucky to have him and my husband.  I feel dark some days, but I remind myself about what I have, and I feel better about life. 

  

Peace, 

  

Jennifer 

I have been on the site for a long time today and finally found your post about MS. 

I too have MS and being diagnosed in 1996, have now had it "officially" for 9 years. I started out taking Betaserone almost immediately. And although slowly, it held off any "real progression". Until this last year. I have also been approved for disability through the SSA in America this year, but am really losing my abilities to walk and function normally!! 

Really, not that bad I guess, but then again, yes it is. 

I have started taking this chemo now (Novantrone), but it is not doing any good thusfar! 

  

I would love to communicate. I don't have a wife, or really anyone for support. Write me at timkerr@columbus.rr.com. 

  

  

Take care, 

  

Tim 
 
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voodidit
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December 16, 2005, 7:51 pm PST

How I Fought My Illness

Quote From: librajen

After the birth of my son, when he was 12 weeks old- I was diagnosed with MS.  I went through some dark days, with a tiny baby, having to go on disability from my job, and having to take some hideous daily medications. 

  

But, that was 6 years ago.  I am blessed to stay home with my son and get paid from my disability.  I am lucky to get all the hideous medications paid for - $2000 / month - (yay Canada!).  I am lucky to have friends and family who understand and who are there for me.  I am lucky to have a husband who is my best friend, and never thought twice about the MS.  "In sickness and in health" are part of our wedding vows. 

  

I sometimes have trouble walking, seeing, controlling spasms.  I have trouble keeping up with my son.  But I am blessed and so lucky to have him and my husband.  I feel dark some days, but I remind myself about what I have, and I feel better about life. 

  

Peace, 

  

Jennifer 

I've posted before about being diagnosed with MS and Thyroid cancer within a month.  It sounds like your husband is a great support system for you even on the bad days! 

  

I am also on disability and wish we had a program to pay for all the meds like up there in Canada! By the time ou pay your basics living expenses, the meds and doctors take everything else! 
 
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barbjack
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December 17, 2005, 2:01 pm PST

para-thyroid removal

Quote From: voodidit

So far the only thing that has really worked for me is high doses of calcium and Vitamin D. i take 6 Oscal +D every day and a 25,000iu of perscription vitamin D 3 times a week. Even with that my calcium still dips a lot. the doctor says that my para-thyroid that is left will probably never take up regulating my calcium so I'll have to take high doses from now on. 

  

Just another price to pay..lol 

hi,i had my thyroid removed 10/2001 due to haveing hashomotoes.i take 5000 mg oscal aday and calcium levels are low.i feel sluggish alot.i have found that if you take the calcium on an empty stomach and eat 1 hour later it seems to absorb better(THAT WORKS FOR ME)i also get b-12 shots.sometimes after a thyroidectomy you can have an absorbtoin problem with calcium.have your doctor check your b-12.after  years of taking big green pills(OSCAL)you just get use to it after awhile and it becomes a routine.just remember you are not alone in this.take care.
 
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barbjack
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December 17, 2005, 2:05 pm PST

oscal

Quote From: barbjack

hi,i had my thyroid removed 10/2001 due to haveing hashomotoes.i take 5000 mg oscal aday and calcium levels are low.i feel sluggish alot.i have found that if you take the calcium on an empty stomach and eat 1 hour later it seems to absorb better(THAT WORKS FOR ME)i also get b-12 shots.sometimes after a thyroidectomy you can have an absorbtoin problem with calcium.have your doctor check your b-12.after  years of taking big green pills(OSCAL)you just get use to it after awhile and it becomes a routine.just remember you are not alone in this.take care.
just wanted to let you know also if you are paying for your oscal and you have medical insurance your insurance will cover oscal with your medical diagnosis.i found this out by my new doctor.it helps me financialy.it was costing me  $50.00 a month.
 
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voodidit
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December 19, 2005, 11:43 pm PST

How I Fought My Illness

Quote From: barbjack

hi,i had my thyroid removed 10/2001 due to haveing hashomotoes.i take 5000 mg oscal aday and calcium levels are low.i feel sluggish alot.i have found that if you take the calcium on an empty stomach and eat 1 hour later it seems to absorb better(THAT WORKS FOR ME)i also get b-12 shots.sometimes after a thyroidectomy you can have an absorbtoin problem with calcium.have your doctor check your b-12.after  years of taking big green pills(OSCAL)you just get use to it after awhile and it becomes a routine.just remember you are not alone in this.take care.

I will definatly ask my insurance if itcan be covered, it gets expensine, going through 2 or 3 bottles a month at 16.00 a pop. 
 
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lisa200679
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December 20, 2005, 11:55 am PST

Living with Endometriosis

Quote From: lpcorder

I was diagnosed with endrometriosis in 1979. I had doctors tell me that it would go away. I had doctors try pills. The pain was becoming unbearable when I was hooked up with an endriconlogist gynocologist. I had surgery in 1984. There was some concern about me being able to get pregnant. I had my first child in 1987 and my second in 1990. After my first child it appeared that the endrometriosis was gone, but after my second child the doctor was convinced it was gone and I have not had any further problems. I am in menopause now (due to breast cancer treatment), but I am convinced if you find a specialist you will be cured also.
i was reading your post about your endometriosis. I am 26yrs old and was reacently diagnosed with Endometriosis. how i was Diagnosed was my surgery. i have had two Laps.My first one was to remove an ovrian cyst that was really large on my left ovarie. but my doctor at the time never remvoed it he said that it would have cause to much bleeding. so about 1 yr later and many checkups,and a new doctor. i had a pelvic ultrasound during this ultrasound my doctor looks at me and says how old are you and i told him i was 26 and then he says to me. do you have any kids? and i said no, why is there something wrong ,and he said well you have two very large cyst one on each ovarie and i am gonna have to remove them.so once again back to the surgery table for me. only one year after my first surgery. during this surgery my doctor found that i had severe endometriosis, he said that it looks like i have had it for a long time. there was alot of scar tissue attacted to my tubes ovaries and my uterine wall.he removed what he could and blew open my tubes. what i cant figure out is why didnt the other doctor during my first surgery notice this if it was that severe?  now many months later . i am still in pain and yet no kids. i have not been able to concieve my hubby and i have been trying for 6yrs now and nothing. the problem is me not him he had a sperm count check and hes good to go , i cant afford to see a speacialist my insurance wont cover it. i cant take a morgage out on my home because i dont have my own home i rent. and i cant get a loan from family. because they cant afford it either. and the banks well my credit is not well good enough to take out such a large loan. i get disabilty , and my hubby well he works but doesnt bring home very much more then my disability checks. this is very deppressing for me , i want more then anything to have my own child and this never ending pain takes a tole on my everday life. sometimes all i wanna do is sleep to try to forget it all .but when i wake up its fresh in my mind. could any one give me any advice on how to coupe with this illness.
 
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joeygirl04
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December 22, 2005, 7:25 pm PST

Severe Sleep Apnea and Desperate!!!!!!

Hello everyone, 

 

This is my first post to the board but I have been a member for a few years now.   I am engaged to a wonderful man (who has his issues but is still wonderful) anyway, I am VERY VERY concerned for his well being and his LIFE!!!!. 

 

Ryan has SEVERE SLEEP APNEA among other heath issues (over weight, high blood pressure, depression and anxiety to name a few).  He stops breathing on average 50-100 times a night from the sleep apnea.  I am terrified that he will stop one of these times and not start again. 

 

He has to sleep straight up at times so he does not stop breathing but it is very difficult because he had hip surgery (which left him with no range of motion or strength) as a teen and is unable to walk, stand, or barely move because of that issue.  Which brings me to being over weight to a dangerous degree.  Not being able to move or exercise is a huge part of it.  Depression has taken over (he has days he doesn't even want to deal with it anymore but does for me and his mom), he is not able to get a good or even a decent nights sleep and is tired all the time. 

 

He has no insurance as he is unable to work due to the hip issue, weight, fatigue and depression/anxiety.  I have gone every avenue that I can think of to get him help and am now considering  going  to the Dr. in his place to get him what he needs.   He has to have a C-PAP machine..............  He Desperately needs one. 

 

I am disabled due to a horrific auto accident in 2001 (I won't even get into my own issues and health problems in this post as it would be too overwhelming) and do not have the resources to get him the machine (they are anywhere from $3000- $5000.)  Who the heck could afford that, what is wrong with people. 

 

I need help and don't no where to turn...........  Ryan is my whole world and if something was to happen to him I would not know what I would do......  I have not wrote to Dr. Phil as I know there are so many other people that need his help too and some to a more severe degree but Ryan's life is in danger and sadly the people that love him are the only ones that care.  He can't even get the meds he needs and the blood pressure meds if not taken can cause a heart attack if not kill him 

 

Due to being overweight to the degree he is he can not even get quality health care at an emergency room as they all say the same thing "you will not fit in this machine"  "Your weight is keeping us from helping you get the help you need."  "We can't help you because you have no insurance and no way to pay for tests, meds etc. "  What the hell is that................. I guess money is more important than a human life these days....... 

 

  He needs help losing the weight and can not do it on his own....  Gastric Bypass is not even an option because no one will even let him in the door to get help because he has NO MONEY, NO JOB, and NO ASSETS FOR CREDIT..... 

 

I will end this post as it is becoming a large book.  Thanks for listening and I would love to get any suggestions/ideas any of you may have. 

 

Thanks, 

Joey (female) 

 

 
 
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joeygirl04
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December 22, 2005, 7:28 pm PST

Apology for posting in the wrong place

It has just occured to me that I posted in this area a very negative post and now realize this was a place for positive not negative posts. 

  

Please accept my apology! 

  

Joey 
 
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barbjack
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December 31, 2005, 4:20 am PST

oscal

Quote From: voodidit

I will definatly ask my insurance if itcan be covered, it gets expensine, going through 2 or 3 bottles a month at 16.00 a pop. 

be sure to have your doctor write out a prescription for oscal do  and your diagnosis.tell your pharmacy to not give generic.i hope your insurance will pay.take care.barbara
 
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