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Hi from one of the frustrated newbies

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#21 Cher


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Posted 13 February 2009 - 04:23 PM

Hi Penny,

I just meant that my heart goes out to you, I just came home from a wake for one of my cousins that had Good Pastures Syndrome. She was thirty-five. We have so many relatives with autoimmune that I feel that I don't have any right to feel bad. My other cousin died in November from Hemachromatosis, he was thirty-eight.

We have a lot of liver problems. I told my aunt tonight that I was done with all of this. I feel that this disease will show itself eventually, I think that it will become obvious.

My mother died in 1981 she was fifty-three. She had rheumatiod arthritis and some other autoimmune disease, but they never found it. She went from doctor to doctor and like me her labs were always good except her liver enzymes were elevated like mine.

She was always frustrated because the doctors would tell her it was all in her head. They would tell her she was too high strung and they gave her tranquilizers. So she was sick. and out of it.

I'm sorry, I don't mean to be so negative, but the doctors tell me that I am perfectly healthy and I just need to lose weight. I am getting the same treatment that my mom got almost thirty years ago.

The only doctor who knows that something is wrong and does his best to help me, is my primary. He was the one who kept me in the hospital for a week with the hives.

He ran every test he could think of and he sat on my bed with tears in his eyes and said I don't know what to do for you. He feels that I have a weird autoimmune that looks and acts like an allergy. I have been to two allergists that say my eyes and my throat swelling is not allergy related, because it is so gradual. My ears even close up, sometimes I can't get a Qtip in them because they have swelled closed.

Anyway, I feel that I have to back away from the doctor thing and just listen and learn for a while. I am going to get my eyes checked, I have diabetes, it is time for a check up anyway. Thanks for listening. I know there will always be someone out there that is worse off, but my mom always told me that I was tenderhearted.


#22 Penny


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Posted 14 February 2009 - 03:18 AM

Hi Cher,

First off, huge warm hugs for you. I am so very sorry for your loss.

I wish so very much that you and I could just sit down together over some mugs of tea and share some tears and hugs then just talk. Online support is wonderful and for many of us it is the only place that we don't feel like we are isolated, like a child in rags staring in through a window at a grand party wanting so desperately to go in and join the party but not being able to find the door.

I just wish I could be there physically and help hold you up, to help fight for you until you feel strong enough to once more fight for yourself.

Please, I know it is frustrating and you are losing hope of finding the condition behind your health concerns, but don't give up. Don't stop fighting and looking. If you need a little breathing room for your own emotional health then by all means take it, but have a plan. Set a date (like after your eye exam) and plan on getting back to the fight for your medical rights.

Your primary care doctor sounds wonderful, maybe you can speak to him at your next appointment about him referring you to the Mayo Clinic or John Hopkins. There they can do a battery of tests with some of the best diagnosticians in the country putting the puzzle pieces of your symptoms and family history together. What do you really have to lose?

I am going to be mean (yep, I am going to pull the "Mother Bear" card) right now your children might be okay, but your family history indicates that there is a good chance that they might one day start showing signs of autoimmune issues since many are hereditary. You do not only have to fight for you but you have to fight for your children.

I had given up, for over a year I avoided seeing doctors because I cannot take any medications and every doctor wanted to give me pills. I felt like I was wasting my time and money because all they would tell me was, "Well, you need to take (fill in the blank), but you say that you cannot keep any meds down so I don't know what to do." I would just buy antacid tablets in bulk and hope my heart would not explode while brushing my hair. Then I went to the Ortho on the 5th of this month and she said the words "connective tissue disorder" when it comes to my lax joints and "autoimmune" and my mind raced.

My daughter's doctor had told us that she has mildly unstable ankles a month ago and we thought "like mother like daughter", but what if there is more to it than that. All of a sudden it was not me looking for my answers, but me looking for answers so my daughter and son will not have to go through years of frustration and uncertainty like I have. I can give up for me, but never for them.

I went right home and hunted down how to contact John Hopkins and sent them a very detailed e-mail, wondering if they would even reply but taking the chance. And they did reply the next day! That was probably the most empowering moment in years. I could take charge. I could knock on the door.

If you want, you can contact me by private message (PM) through the forum. My sleep schedule is out of whack so I am up at all hours, so that is not a problem.

For right now, though, I am sending warm comforting hugs. And I offer my services to run over the toes of anyone who gives you a hard time with my trusty wheelchair -- you distract them and I will roller-pounce then bat my eyes all innocent like and say, "Ooops, my goodness, I am so sorry." (They never yell at the wheelchair lady. :lol: )


#23 Cher


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Posted 14 February 2009 - 10:12 AM

Dear Penny,

You are so sweet. I am truly lucky. Yes, I worry about my boys too. Three of the doctors that I have seen this past December said that they felt that I should go to Mayo. My aunt (one of my moms sisters) went there to find her diagnosis. She has Primary Bilary Cirrosis.

I just don't feel that I am sick enough to go. I am more scared of running up all of these bills. The bills are rolling in now from all of the tests that I had done in December. Three hundered here, four hundered there, and that is our portion. These last round of "diagnostic tests" are going to cost me two thousand dollars when all said and done.

I still have a high energy level, I take care of four men, keep an immaculate house, cook very nice meals, and work very hard part time. I know that if I decide to go to Mayo that my primary would set it up for me. One of the rheumys that I went to felt that I had Dermatomyositis, I still havn't ruled that out yet. My hands look like that is what it is, and very puffy eyelids are one of the symptoms. My eyelids aren't red though, just puffy.

Right now, I think I am better off just waiting and seeing.

Thanks so much for your warm thoughts.


#24 Amanda Thorpe

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Posted 15 February 2009 - 11:24 AM


"They never yell at the wheelchair lady"...love it!

I would quite happily run into/over people but my husband, who pushes me, won't do it! It does not matter how many times I say "just plough them over, they can move!" he won't. He's far to kind, sweet, polite...maybe one day it will rub off on me! :lol:

Power to the wheelchair users... we're here, some have gears, get used to it!

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#25 razz


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Posted 17 February 2009 - 08:54 AM

Hi Penypenybopeny,

I like your enthusiasm and sense of humor, especially your "wheelchair" antics. I'm especially glad you found this forum of caring and supportive people who also find humor in our everyday life.

I read the part on this post about your cute dog, where he's been trained to help you by picking up things and bringing them to you. How cute and helpful! I also have a dog, Tito, he's a Bichon Frise and I thought if I could train him to pick up things that fall to the floor I wouldn't have to find my reacher tool every time something falls. (I never realized how many times in a day something falls to the floor.) I was able to teach him and rewarded him with a biscuit each time he accomplished this great feat, that now he looks for things to pick up just to get a treat.

I wanted to welcome you aboard and I hope you are feeling well!

Live well, Laugh often, Love much