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Nhwm, the medieval laws applying to closed adoptions are ludicrous imo. Having no info about where we came from, medical background, health history, is beyond absurd and a basic human right we're stripped of. Makes us feel like we were dropped off on the stoop by the STORK fgs! 😑 Finding my bio family in 2000 at least answered some medical history questions I'd had for 43 years, including that my birth mother died of cancer (uterine spread to ovaries) at 57. Still to this day, adoption records are closed in N.Y. so I had to hire an ex cop to have someone steal my records from the adoption agency. Even if I needed a bone marrow transplant or a kidney, the records would STILL NOT BE OPENED.

Skyrizzi is a biologic used for moderate to severe Crohn's disease. Did DD ever look into it? I'm not recommending it......just mentioning it. 2 treatments at first, then 4x a year for maintenance.
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JoAnn, I’m sorry for the loss of your friends. Diabetes affects everything. It’s awful when people lose limbs to diabetes.

My brothers are always trying to get me to indulge in food like they do. I love food as much as anyone else but I am the opposite of my brothers. I watch what I eat because my dad had diabetes as well as my brothers.

I take after my mom with eating healthy. She lived to be 95 without getting diabetes.

My oldest daughter has diabetes. She has type 1 diabetes. She has lots of trouble balancing her blood sugar. Unfortunately, the adoption agency didn’t provide a thorough medical history to us.

Back then open adoption wasn’t legal. The only thing that we know is that her biological mother and father were college students.

I do get concerned about my daughter’s health. She also struggles with Crohn’s disease which is miserable for her. She is constantly watching what she eats.

I have had to accept that my brothers don’t monitor their diet as well as they should. I’m not going to waste my breath or stress out over it because it would be pointless.
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Oh, dear friend. I’ve marked down 4 weeks from today. May The Lord heal you completely by then.

Please, Lord, please!
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NHWM,

If your brothers could see what diabetes does to the body they would stop. Even those who have stuck to their diets (there is a little cheating) have problems as they age.

My GF was a juvenile diabetic who was diagnosed in 1958. She used strips to to test her urine and gave herself needles in her thighs. In her 50s she had a massive heart attack she almost died from. By 60, she had her leg removed from the knee down because of a sore that would not heal. Gangrene had set in. By 63 she was gone from kidney failure. Juvenile diabetes was not her fault, her pancreas just did not make insulin. My other friend became type II. This can be regulated better with weight loss and diet but it too can kill. This friend had never really taken care of his health. He too lost a leg. He too died of kidney failure at 70. Dying of kidney failure means the poisons build up in your system, they go to ur brain and you become confused and delirium sets in.

So, if ur brothers are very aware of the consequences of eating the way they do, I would not worry about it. Their lives and there choice to go out the way they want.
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Wishing you well, Lea. Dizziness is an awful feeling. I certainly hope it ends soon. You’ve been through a long tour of duty with this crap.
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Geaton, I know.....you are right about the Scopolamine patch, which is why I was comparing it to snake oil and magic elixir from the head shop 😶. Look at the list of side effects from Google:

disorientation.
dry mouth.
drowsiness.
dilated pupils.
dizziness.
sweating.
sore throat.

Dizziness. Yay. 😑


I just pray to God once I'm off the poison prednisone that something improves here.
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LL, scopolamine (aka Transderm Scope patch) will make you groggy and really is for seasickness and BPPV (inner ear problems). Been there, done that and you can get side effects from using it as well (I knew someone who did). Just want to encourage you to keep hanging in there, literally, You're getting close to the end of the taper. Keep imagining yourself better, at the other end of the tunnel, in the daylight. We are still praying for you!
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Lea: So sorry to read that you're in bed today. Prayers to our Heavenly Father.
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((Hug)) to you Lea. Sorry for all you're going through. I hope better days are coming soon.
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Cx, 3 more effing weeks to taper if I quit at 10 mgs, 4 weeks if I quit at 5 mgs. Tomorrow I go down to 20 mgs, then 15 mgs the following Saturday, etc. I believe this next tapering period will be the worst of all........my body is seriously withdrawing from this poison hard now. Coming down to low doses is always the worst w steroids. I know from past experience. I'm going to expect the worst instead of rainbows and puppies and be realistic.

Meanwhile DD called to say we forgot to ask about a Scopolamine patch to try for vertigo. Chuck said I should download a large photo of a guinea pig and put my name on it and send it to her. The patch helped my mother who had true BPPV but it exacerbated her dementia to the point she was hallucinating mice running on the floor in rehab 🙄. And severe dry mouth to the point she was sucking on Xylimelts I still have in my medicine drawer. Oh goodie. Only thing left to try now is snake oil and magic elixir from the head shop down the street.
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Hey, LL.
We have family visiting, but I wanted to come here and check on you.

I’m praying for this dizziness to pass, already!

Are you down to 3 more weeks of tapering yet? I should have made a note.

I am amazed how you still answer questions here, and give knowledgeable and compassionate responses. Still helping others, even while you feel so yucky! You are a gift to this forum.

May God grant you restful sleep tonight.
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Lea,

You’re right. I had to make peace with this is how my brothers choose to live. I can’t stress myself out policing their choices.

I am the opposite. I hardly ever indulge because I don’t want to have heart disease or diabetes.

My mom didn’t ever smoke or drink. My dad smoked when he was in WW11. A lot of soldiers smoked. He quit when my oldest brother was a baby.

My grandfather and uncles smoked. I remember when everyone smoked on television, drank cocktails galore. People smoked cigarettes in doctor’s offices and hospitals, the grocery stores, banks, all over. Pregnant women smoked too.

Nowadays, there is no smoking here. No smoking in bars or even at Harrah’s casino here. New Orleans banned it. The next parish over, Jefferson parish allows smoking in bars. I don’t think any restaurants allow it anymore.

The worst though, was when smoking was allowed on airplanes. Remember that? I felt bad for the flight attendants then.
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Nhwm, if your brother passes from heart issues, you'll rest assured he lived and died on his terms. That's how I look at these things. My mother spent her life on a diet. Never smoked, drank, ate desserts, etc. And still got dementia. The last 7 yrs of her life were a mess. Healthy living doesn't guarantee a long healthy life, either. Look at childhood cancer, for instance.

I don't blame you for wishing your brothers would keep their diabetes in check, but you're wasting your worry. They'll live as they wish, is the truth 😣 When I see my stepson and DIL smoking, I have to bite my lip. I know how I regret the smoking and other unhealthy choices I've made in life. We're invincible when young. Then when we're a lot older, those habits are so hard to break. I thank God I broke most of mine.
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Thanks, Golden

And thanks to everyone who prayed for my brother. I guess that I am the healthiest in my family.

I am constantly amazed by my brothers eating habits. You would think that they would eat better with their history of diabetes and heart disease. I am proud of them for stopping smoking but they have a long way to go in following a healthy diet!

Lea, I swear, I look at the way that they eat and wonder how I am in the same gene pool! LOL 😆 My brother snuck out of his hospital room after his recent surgery and went downstairs to cafe and bought ice cream and candy bars! Then he stopped at the coffee shop and bought regular coffee because he didn’t want the decaf that his nurse gave him.
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Gershun, unbelievable your poor brother died when shingles went to his brain. I suffered horribly from the covid jab side effects, then wound up with metastatic melanoma which I'm sure came from them .....but I did get the shingles vaxes (2) before the cancer was diagnosed. The covid jabs are are not traditional "vaccines" anyway, but I'm still leery about shots in general now. I had the bivalent flu shot last summer and never again, is all I'll say on that. We do know my sensitivity to things however 🙄 which is a cautionary tale. I'm in bed today since 2pm with horrible dizziness yet again. Today is 4 months of this chit, on the nose. It's hard to believe I've made it this long, tbh.
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Lea - Sounds like a wonderful trip, I am glad the shingles didn't affect Chuck more. Bless those donors. So many lives have been saved, Love the license plates. Such a nice FD gift.

Need - glad your bro is finally out of hospital. Hope the rest of his health issues get treated well. Corneal transplant are usually successful, I believe.

Gershun - sorry you lost a bro to shingles. I had a g/f who got shingles and it stated to go to her brain. They flew her to Edmonton and she was treated successfully. It was touch and go for a while

I had a shingles vaccine - was not going to miss it after what I saw with my friend and another friend at the college who had it and recovered but was still in pain months later.

“‘But I will restore you to health and heal your wounds,’ declares the LORD …”  Jeremiah 30:17
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Shingles can be dangerous. My eldest brother died because the shingles went into his brain. There is a shingles vaccine available but I truly haven't felt like myself since I got my covid vaccines so I'm very wary now when it comes to getting any kind of shots.

Lea, so sorry the dizziness has not abated. I am still praying for you every night.
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Lea, Sounds like a fabulous trip! I’m glad that Chuck didn’t have complications. My brother needs a transplant. He’s looking forward to regaining his eyesight. Hopefully, everything will work out well in the end.

Speaking of brothers. My other brother was able to leave the hospital after his surgeries. The next thing they will address is his heart. He has a history of heart issues.

All of my brothers have heart issues, past heart attacks and surgeries.
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Nhwm, Chuck wound up getting shingles only in his right eye in 2018 right before we were leaving for Holland and France ! The antiviral meds his doctor gave him did not prevent the virus from going into his eyeball.....but he was very lucky there were no complications (for a change) and he didn't lose eyesight. Our trip stayed on as planned, and we got to see Keukenhof Gardens in Holland with all the tulips and fab flowers. Then we did a river boat cruise of France ending in Paris for a few days. I agree everyone should be organ donors unless your religion prohibits it.
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The license plates sounds cool! What a unique gift!

I hope the woman in your group has a successful outcome this time.

I wish everyone would consider being a donor.

My brother that lives in D. C. is scheduled to have a cornea transplant soon. He’s blind in his right eye due to complications from Shingles.
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Yes nhwm. Chuck sent the letter to Mayo who sent it to the donors family. If/when the donors family responds, Mayo forwards their letter to him. All anonymously unless names are exchanged privately and families meet up in person which happens occasionally. DD just bought him Donate Life License Plates for Father's Day which he's got on his car now. They're very neat.

One gal in our group was on her 3 rd liver transplant as the others had rejected for various reasons. This 3rd one is good at the 1 year mark but a transplanted organ can reject at ANY time, despite all the methods in place to prevent that from happening.
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Lea,

I remember that Chuck had serious issues and had to have a transplant. I didn’t think the donor’s family had to reveal who they were. It’s fantastic that they responded to Chuck.

I was wondering though how the connections are usually made. Does the recipient send a letter to Mayo Clinic and then they forward the letter to the donor’s family?

My friend’s great grandson, a teenager now, has had heart issues since his birth. He has had two heart transplants. His body is rejecting the second transplant. They are doing everything they can to save his life. It’s very sad.

There is a Facebook page telling his story. He lives just north of New Orleans. It’s so sad when children are born with a bad heart.
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Lea, just catching up, so sorry the dizzy isn’t abating and giving you a much needed reprieve. Cannot imagine how old it’s gotten. No alcohol at all for hubby and I either, both of us were raised in families that didn’t drink, and we’ve seen some bad extended family consequences of alcoholism, but mostly, we just don’t feel any need or like we’re missing out on anything. No problem with those who enjoy it, as most of our friends do. Our adult children tell us they don’t drink either, but it’s okay if they do. And we’ve also sent the donor family letter off, no response as yet, maybe one day. Hoping your anticipated response is all you both hope for. Prayers for healing from the relentless dizziness and for peace in the journey
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Nhwm, the liver donor is deceased.....Chuck wrote a letter to the donors family expressing his and our gratitude for the gift of life he was given for the donation of the organ. It's all anonymous, of course. An organ transplant at the Mayo Clinic requires an entire liver be used, not just a piece from a family member like a son or daughter. Between cancer and cirrhosis, his old liver was shot.
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(((((Lea))))) so sad to hear you are having a really bad time again. There being no pattern in this is so discouraging.

Father God, we pray for mercy for Lea and release from these bonds that hold her down. Lift her up, oh Lord, so that she doesn't stumble. May your angels that surround her keep her safe from harm. Show her Your love, In Jesus name.

You know how we can be about things which sparkle and shine. We imagine they will put back something of what has been lost.
Catherynne M. Valente


Wonderful news about Chuck's donor's family. That's so meaningful. A little joy and something uplifting in your troubles.
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Lea: So sorry that you've had 2 rough days. Prayers for better days to come.

How great to hear from Mayo about the donor family.
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Lea, Sorry that you are having a difficult time.

That’s exciting to hear a response from the donor. How does that work? I am assuming that if they would choose to remain anonymous that they can. Or do people know the source?

It is an interesting process, isn’t It? Donor transfer to another person. Overall, medical practice is fascinating! We have come so far.

If only our ancestors could come back to see just how far we have come. They would be amazed. Years ago people died.

I think about how far medical practices will take us.

Like most teenagers I read tons of books. I read about test tube babies. Never in my life would I have ever dreamed that I would have grown up and had three in vitro fertilizations myself, yet I did. None were successful for me but they certainly have been successful for others.
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Past 2 days have been back to rough for me, unfortunately. Extreme dizziness at about a level 8, so no rhyme or reason to this chaos, as usual. No muscle building exercises for me bc when I'm this dizzy, it's all I can do to function. Just when I start to feel a bit of hope, it gets shot down again and I feel like I'll be saddled with this condition permanently.

Mayo contacted Chuck...his liver donor family answered his thank you letter he sent them last summer! We are thrilled to have gotten an unexpected response and are awaiting it's arrival in the mail w/i the next week or so.
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Echoing Need, and hoping the worst is behind you.

Were you able to do any of that muscle building today? 💪

Praying for blessings for you and Chuck today and always. 🙏🙏🙏.
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