I don't care what "they" say ...

[SLEEPY101]

Wheww!!! I just read this entire thread and I am so exhausted:) It was very interesting reading everyone opinions.

Everyday life I have a very positive attitude. I try to always have a smile on my face and be freinding even though I am in so much pain. I don't like to burden my family or friends with my complaining.

That's why I come to this site to vent. If I didn't have a chance to vent my feelings I don't think I would be a very nice person to be around. When I  come home from a horrible Dr appointment the 1st thing I do it come and vent then I am not so upset when I explain the visit to my family. It is  nice to know other are going through the same things I am going through.

[inga]

This disease has been awful for me, but was worse was when a drunk driver hit me and my 4 and 6syear old child, head on at 55mph, in a truck and we were not compensated, and this was way before air bags, or even the thought that one would ever escape death in a subcompact car versus truck.  What was worse was when my 9 year old was assaulted, in the worst way, and the perp only got 3 years.  What is worse is one of my girls has to have repeated surgeries to remove a recurrent vascular tumor that could occur anywhere in her body.  What is worse is that my son gave his health for his country....

What is good, is none of these people is angry!  This disease for me is so painful that I can not walk to the bathroom at night without wincing and groaning.....but this isn't the worst life has to dole out.  No one every promised me life would be perfect.  I was told it would be a challenge.

Call me simple, but, I kinda believe in the law of physics.....The universe, at least the one WE live in, has light and dark matter.  Things kind of balance in general, altho areas are chaos, things move toward homeostasis.....maybe even good and evil, balance.  You can't have one without the other.

I think any Supreme Being is pretty busy and really doesn't personally decide to bestow disease or abundance on any one person.

Some people have to be angry and that is fine....and God is probably a good place to direct that anger.  I hear he is all forgiving....so, what the heck, lay it on him.  I imagine any Supreme Being could absorb whatever vile we could throw at him/her.

I look at life more as karma....as I said, I was brought up Catholic, I no longer practice, since some things didn't fit my belief system....most of every religion doesn't fit my belief system....because life is so confusing.  I have found by experience that anger is a poison if held onto too long. 

Anger has its place.  Anger is not bad.  But it is toxic if it becomes a lifestyle.  It isolates one.  It hurts one's loved ones. It makes every one run from us.  It makes us lonely and bitter.  It darkens the life we live.

If it makes you feel better, be angry. Vent....but, I have to hang onto some hope that I will find the courage to deal with this pain and disability, and that others share that hope.  Not hope that this will be cured, it won't.  But hope that the human spirit can rise above pain and suffering.

This is the last I have to say on the matter.

[shevonne]

Inga,

You have the right to feel what you feel.  You have had a lot of situations in your life to help you come to where you are.  I am proud that you are there.  No one is trying to make you feel guilty because you can rise above the pain; it's amazing!  I think that one day I will be there also but right now I do have my moments and I need to express them.  However, I would never blame anyone for making the best of the situation.  Each individual will deal with this differently!  Just know that everyone is different; some strong; some weak; what pain I can tolerate; others may not be as tolerant.  Everyone grieves differently and there is no timeline on when it ends for each person.  People such as yourself can be so encouraging and compassionate!  It has been said that misery loves company; well I don't want anyone to join in my misery!  I want someone that is going to guide me through the paths and be proud of me as I am of some of you that are rising above this pain!

[cmclien]

Its almost like a new thread needs to be started here but Liz have you been tested for celiac?  Is that why you have malabsorption?
That would also explain your severe reaction to a few bites of pasta.
I really feel for ya, you seem to be suffering so much!  I'm not saying you should be on anti-depressants but I will say you don't have to feel depressed to need help.  Some people, like myself and my sister experience events in our life as anger not depression.  It has to do with how you were brought up, family dynamics etc. but feeling SO angry with no relief in sight is like a downward spiral.  I am not a doctor and therefore won't offer you advice on meds but maybe talking to a counselor would help and getting a professional opinion and having someone to talk to, to vent at would probably be very cathartic for you.  There are support groups too but if you're like me maybe not comfortable with the idea.  I saw a counselor for a few year in my 30's for anxiety and no meds but it did me a great deal of good to have someone to talk to.

[cmclien]

P.S. Thats a myth that a low carb high protein diet causes kidney disease.  The truth is that people who already have kidney disease should not be on a low carb high protein diet. 
I read a really good book this year by Jonny Bowden called Living Low Carb that does not advertise any one diet but covers them all and goes into alot of detail about the low carb life.

Its funny, the diet you have mentioned in you're other post is almost identical to the IC diet out there which some think is autoimmune in nature.  I'm all for the low sugar, lower carb diet (less then 15g sugar, 120 or less of carbs a day).  Have been following it with my hubby since last January for health reasons more then for weight reasons though it does help keep the weight off while eating alot more food.
Cindi

[irish]

I was just diagnosed with diabetes and had to take 3 classes of learning to live with diabetes as mandated by Medicare and just about evey other insurance company in the US. It was one of the best classes I have had in a long, long time.

One of the things we learned was counting carbs and knowing what foods we could eat. The one more important thing that I learned was that a person needs to eat 130grams of carbohydrates every day just to keep our brain up and running.This means that the energy needed is used to maintain all our bodily functions such as temp control, blood pressure, etc which are contolled by the base of the brain. The brain also uses carbs to maintain the energy to keeps those chemicals up to snuff which in turn makes us able to think, reason, etc and everything else that we are able to do.

That is why people with low blood sugar get confused, mean, belligerent, unable to make decisions and problem solve. If we eat too little carbs we are in danger of being a danger to our family. Driving a car with this person is not safe and having them cook on a stove is also a big problem.

All this stuff that is mentioned in this terribly intense diet is something to pay attention to but if you try to adhere to this you may be suicidal and not know it. Of course, the chemicals and preservatives are bad for us, of course too much sugar and carbs are not good for us. Gluten plays a big part in some autoimmune disease as it can't be eaten by people who have Celiac Sprud. My hubby has been diagnosed with this and I have cooked gluten free at our house for over 30 years.

Some people can't eat dairy as they are either allergic or lactose intolerant. When people get so hung up a a huge diet that eliminates practically all the food groups that we need to sustain life it gives one pause. Why is this person so "far out" in their thinking about their diet?? If they are trying to cook for a family it could be that the the rest of the family are being literally starved. One can't eat high protein diets and get by with it for olong because it will eventually take its toll on the kidneys---first it takes its toll on the liver because if you don't eat enough carbs the liver has to pull the energy out of the protein, fat, etc and really hard on the body as far as all organs are concerned.

If there are not enough fats taken it our body will eventually pull the fat out of the liver and if this goes on too long it can become unhealthy. We need fat to lubricate our eyeballs, our intestines, all the organs, etc. We need fat and water to help keeps us up and running. We will dry out without fat. Our hair will turn absolutely brittle and our skin will crack. Not only that we need fat to help us metabolize the fat soluable vitamins that are absorbed in the small intestine.

I would like to see the exact article that that diet came from as I find it too far out to be tried and true. It is your choice, Liz, if you want to live like that but I am concerned about how you assess your "side effects". Thank you and good luck.  Irish

[puccini914]

By the way, check out my diet post.  I'm trying to find stuff that people with sore tummys can eat and then we're going to try to come up with recipies to make them yummy.  Come join us.


Sorry Scottie, went too far. My apologies. I edited out a legthy inappropriate Religious monolougue. Sorry.   Anyway, as far as the diet issues go I'm trying to help people come up with ways to alter recipies to make them more tolerable, I welcome any and all suggestions.  Jenn

[Scottietottie]

Hello

Please can I remind everyone that religion is one of the topics not to be discussed on these boards. Politics is another. Both are too contentious.

Thanks - Scottie

[LizPetillo]

Its almost like a new thread needs to be started here but Liz have you been tested for celiac?  Is that why you have malabsorption?... maybe talking to a counselor would help

I don't have Celiac.  Been there .. tested for it ... don't have it.  I noticed that when I ate bread or pasta that everything got a whole lot worse.  I asked around.  Drs. looked at me like I was from Mars.  Then the Sjogrens Foundation put out the info about anti-inflammatory diet and how many Sjogrens people suffer when they eat bread or pasta because of the Sjogrens.  

Counselor?  No.  I have a degree in psychology and recognize the 5 stages of grief.  I did the 'shock'.  I did the 'bargaining'.  I did the sadness.  I'm in anger.  Gotta' let it burn out on it's own.   To fake it and stifle it isn't healty.  Just let it burn out.  

Faking happy or talking doesn't take away the truth of the situation.  Just gotta' let the anger burn out.

[Scottietottie]

I think you are absolutely right about the anger. Everyone gets through in their own time. It can't be rushed.

[puccini914]

Liz, just don't let it burn you out.  Sometimes we hold on to anger too long.  I've done that with DH on a few issues, big mistake.  I get angry about being sick, especially when it comes to taking my kids outside.  People keep telling me it's okay, just do it, but they really have no idea the degree of my sun sensitivity which has now been hightened by the methotrexate.  I am actually limited to from the car to inside and that's it.  It really stinks for the kids and breaks my heart.

[syng4hym]

I think this disease is a nasty one... it takes away everything that you enjoyed.  I used to love to walk 3 miles a day, but now, that's not possible.  So sad.  Eight years ago I didn't take one medicine or go to the doctor, now I go to atleast 3 specialists a month (at $35 a pop) and my regular doc once ($20), plus my 12 different meds a day...  I'm broke just from medical expenses.  Sad. 

[puccini914]

The whole reason I even applied for SSI  3 years ago was because I knew the medical bills from whatever this disease was would become a seriuos burden on my family.  We've always struggled finacially, just scrapping by never bothered me, but this illness would surely cripple us.  I guess we were lucky that our income was so low we could qualify for Medicaid, but SSI was just approved, and whenever the final letters come through and the payments start our new income will actually put us over the limit to recieve low income Medicaid.  Funny how that works, Huh?  At leaset the kids will be covered under GA Peach Care and I'll automatically still get Medicaid through SSI, the only one outta luck will be DH.  He running around to doctors getting as much done as possible before all his coverage runs out.  What a world we live in.

[inga]

Hubby wants to retire, when he does, it takes 50% of our monthly income to pay the premium for health insurance.  We are middle class.  I dunno what is out there to help people like us.  I guess we will go without, which is something we are discussing....just throwing it all to the wind.

[navydad]

Now that I have (retired),, I was fortunate to get SSDI on the first try,, I was only in the union for the last 14 years that I worked,, and the way that worked was my employer had to put so many dollars into the trust fund for every hour I worked,, I had worked tons of overtime but since I retired early at 55,, I took a 30% cut in my pension,, along with my wifes income were not doing bad till you add in COBRA for me,, and insurance for her,,, and its over a 1000 a month,,, and her insurance has a 5000 deductible,, add in mortgage and everything else,, its not a lot left,, but with my health the way it is,, its not like i;m out blowing anymoney,, everything sucks