I need to send a hard email

[purplejackmama]

Oh my. Your plate is more full than I could ever imagine. Be done with this crazy. Seriously. No email response, just nothing. Your focus is on your own family not carefully constructing an email to her.

 

I hope things get better for your daughter. Many thoughts and well wishes!

[mamiof5]

So sorry your dd is having so many medical issues! Will pray for her. As far as"friend"? Another vote for ignore and move on.

[El...]

Wow.  That is so... pushy of her. 

 

You really do not owe her a response.  I'd just let your finger drop on the delete button and go on doing what you need to do.  If you feel harassed later on, you can block, be too busy to answer/talk, etc.  You don't have to satisfy her desire to discuss this with you.

 

I hope your daughter feels better quickly.  That sounds awful.

[dirty ethel rackham]

Another vote for removing this woman from your life.  I certainly would not put her in the "friend" category.  What a loon!

[J-rap]

Maybe she just meant -- knowing you have other children to take care of--that your daughter would be in good hands for a few days at this Children's Hospital while they tried to get to the bottom of things, once and for all?  Although with your updated info on the woman, she sounds a little nutty, so I'd probably just ignore her and not even respond.

 

That said, I don't disagree with the idea of going to a real thorough specialty hospital like Mayo, where they have all the experts and run every test possible to try and get to the root of a mystery illness, IF you feel you're not getting answers where you are.

 

I'm so very sorry for this and all the other things you've had going on.  That is a rough road to be on.

[AimeeM]

Just don't respond.

I say this as someone who has been there. When DS6 was first dx'd with his medicals, everybody and their mother had an opinion - what we should do, where we should take him, etc. 

 

I think everyone who knew about the situation knew me well enough to know not to ever suggest I take him to a hospital and just leave him there, though. That's a bit out there and I would have a hard time biting my tongue at that suggestion.

[happi duck]

(Hugs)

 

This woman is an acquaintance *at best*. I am another vote for just ignoring her.

[foxbridgeacademy]

I'm with Catwoman and other posters who think you need to be done with this person.  Unlike many PP I could not under any circumstance be kind, I'm not sure I could even be silent. 

[lmrich]

I am so sorry you are going through this. 

 

Just ignore her. She is not worth the energy anymore. 

[creekland]

Just now read this post and want to offer my sympathy and best wishes.

 

As for your friend... she seems right up there with those who suggest the whole thing could be fixed by getting rid of a Harry Potter book or Cabbage Patch doll in your house.  You are aware that those cause such issues, right?   :lol:

 

Take that with the sarcasm it's typed with.

 

Treat her advice in a similar manner to how you would treat that advice.

[Samm]

Have any of your dd's other doctors wanted to admit her into a children's hospital?  Can issues-friend's husband somehow get dd in to see the specialist you want earlier than you can?

 

If no to the second question, I'd starkly ignore "friend" completely and make sure she can't freely post on your Caring Bridge page.  Don't engage further unless you want more charming visits or emails.  Put beautiful stock photos of fish on there. (kidding)

 

Breathe, and don't worry about her.  She has issues.  She thinks you are enabling a self-made disease.  This is horrible of her and her future actions may become even more horrible if you engage her further. 

 

Best of wishes to your family and your dd.

Edited December 18, 2015 by Samm

[Word Nerd]

I wouldn't write a hard email. I wouldn't even reply.

[NoPlaceLikeHome]

:grouphug:  :grouphug:  :grouphug:

 

I am sorry that you you are going through this. One thing that our family member was able to do was to get a phone consult to one of the specialists before travelling there. I am wondering if one of her doctors or yourself could get a phone consult from a national expert that is a plane ride away to get their opinion since it is easy to electronically send medical data. This might save your self a trip and allow for another expert opinion. 

 

I know for my son, I am grateful that we moved near John Hopkins which is renowned for allergies since we were finally able to see a doctor there which was life altering. The 2 previous local allergists essentially told us that he would never be able to eat nuts. Whereas John Hopkins did blood work (RAST) and eventually did a food challenge which is the gold standard when it comes to allergies. Also, John Hopkins from what I recall does not do any skin testing since they consider it useless.

 

I am sorry if I am being redundant. I am just sharing what has been helpful for us. 

[Anne in CA]

I am praying for your dd. I would not even lose any more of your thoughts to this person. Someone with these issues is not in a good mental place to be a friend.

[vonfirmath]

I'm following a friend on Facebook who has two children with different mast cell diseases (And has discovered she has one too -- starts to explain why they have had so many allergies to deal with over the years) and have learned a LOT lately -- I don't even know of the other things you mentioned. But that, by itself, makes it complicated.  For a time, before her daughter was diagnosed, the doctors were trying to get her to put her daughter in a part of the hospital for children with eating disorders! So even for doctors... I would not leave a child of mine alone. She had to fight, HARD, to get the child transferred to another hospital with a doctor who would look for a solution physically instead of wash their hands of the situation.  You can't do that when you aren't there to see the change in attitudes of the carekeepers!

 

You cannot make her happy. You have lots of issues of your own. I'd hit delete and keep moving forward. She isn't worth replying to at this point. And anything you say will be the wrong thing so can it be that much worse to not reply at all?

 

(ETA the friend above has more children children. One is over 18 and basically on her own. But yes, she spent a bunch of time in the hospital with one kid, had the next youngest close by at a Ronald McDonald's home with the over 18 child some of the time. and two more kids at home on their own much of the time. IT was NOT ideal. But they did what they had to do.)

 

 

Edited December 18, 2015 by vonfirmath

[Annie Anne]

I

What should I do?  Like I said, no matter what I do, she will be offended.

 

For anyone interested, dd has been diagnosed with Chronic Epstein Barr, Mast Cell Activation Syndrome, Ehlers Danlos Type 3, Postural Orthostatic Tachycardia Syndrome, gastroparesis, and asthma.  Right now, she has no safe foods, reacts to all smells, her nervous system can't stand much stimulation, and she is in a constant state of low grade anaphylaxis.  Until today, she couldn't even take a sip of water without vomiting.  Hopefully the new tube, bypassing her stomach, will help with that.

 

I think I would write back and ask her how long she has been a fan of abandonment.

Then I would write her off. You have more than enough on your hands, worrying about her

being offended. She did not worry about offending you.

Praying for your daughter and for you.

[Annie Anne]

After reading what you wrote later, I would delete the e-mail and would not reply.  Period. 

I think I would, too. Just leave it alone. The further information puts her on the

This is Someone I Do Not Need In My Life Right Now

list.

Unless you need her for the entertainment value.

 

[38carrots]

She does mean for me to leave dd alone at the hospital (3hours from home), go home, and let the doctors work things out.

 

This friend has her own issues.  She is severely allergic to fish.  She has a bottle of fish free something in her home, but every time she sees fish on the label, she has a heart attack over it.  Since she has such a hard time with her allergy issues, she thinks everyone does.  She thinks a lot of dd's health problems are mental problems.  She thinks dd is scared of a reaction, so she causes the reaction by being scared.  She thinks I am enabling dd by not letting the doctors use hand sanitizer near dd and whizzing her away from people smoking, drinking coffee, and just plain old stinky overperfumed people, because they cause her to react.

 

A couple of months ago, dd was hospitalized due to vomiting and weight loss.  The doctors had never seem someone with dd's illnesses and assumed that dd was either anorexic or mental.  They flooded her (20+ a day) with psych people.  Dd and I were getting pretty tired of all the psych questions and noone was trying to figure out what was really wrong.  Our friend and her dd visited.  She told us the story about the fish and started in on how she understood that dd felt sick, but the mind was very powerful and could make you feel like that even though you weren't really that sick  It was a mind thing.  Dd slightly smiled at me and I smiled back.  We had been hearing that all day long from all the doctors, and we couldn't believe friend was saying that.  Friend got mad, told me not to smile and said dd always had an attitude.  They got up immediately to leave and she wouldn't even say goodbye.  This friend does not know dd.  We only see their family a few times a year and for the last three years dd has been too sick to visit with anyone.  Even when she was well, dd was the most mild mannered, mature for her age, quiet person you could ever meet.  I don't know why friend said that about her.

 

After reading this, this woman is not your friend. Stop calling her your friend. You don't need to reply to her email, it won't change anything. Ignore her, she is not worth your mental anguish. Block her. You don't need this bullshit in your life.

 

[sassenach]

Do not, do not, do not respond. She is nuts. Responding is engaging. When you got up this morning, did you think to yourself, "I just really want to have a conversation with crazy-not-friend today."? Of course you didn't. DO NOT RESPOND.

 

((((HUGS))) to you.

 

Now for some unsolicited advice that you are welcome to completely ignore (your not allowed to ignore my above advice). We have friends whose son has severe EoE and is allergic pretty much to all food. They went the medical route all the way to the end of the road, and basically expected him to die shortly of all of the complications. Then they discovered Gerson therapy, which I was completely skeptical of, but they really had nothing to lose. On the therapy (for a few years now), their son has basically gone into remission. They're still being followed by their medical team and multiple biopsies have shown continued healing. I wouldn't believe it if I didn't know them personally. Here's their blog http://nomuck.com/gersday-thursday-what-if-im-considering-gerson/

[idnib]

Don't respond. Her suggestion is so ridiculous you shouldn't have to spend any of your energy writing a difficult email. It's not worthy of a response, not even a negative one. Instead just delete and focus on your family. 

 

:grouphug:  :grouphug:  :grouphug:

[Lanny]

The suggestion the retired M.D. has made is probably advice that you should follow, immediately or sooner.  However, I would not drop off your DD. Someone (probably you) will need to stay with her.  The fact that she had 2 ambulance rides to the E.R., on 2 consecutive days, should tell you that her situation is precarious. If someone is an in patient in a hospital, if there is an emergency, they can be helped, much more quickly than someone who has an emergency in their home and needs to be transported to the E.R. in an ambulance.  If you are in/near Minnesota (or somewhere where they have a satellite hospital) the Mayo Clinic might be a good place to look into. If you are in Texas, Texas Childrens Hospital in Houston might be a good place.  Your daughter is critically ill and she needs critical care at this time.  GL to her!

 

ETA:

I looked at the OP again and I see that you are in TX, from your name.  Super!   Texas Childrens in Houston is a possibility. In Dallas, I believe there is a childrens hospital next to S.W. Medical School / Parkland Hospital. If you are in/near Lubbock, Texas Tech has a Medical School.  Generally, a hospital affiliated with a medical school (a teaching hospital) is the best place to be, for someone with severe issues that haven't even been positively diagnosed at this time.  In San Antonio I believe there is a UT Medical School.  Many options are available to you, within the Lone Star State!

Edited December 18, 2015 by Lanny

[Lanny]

@Melinda  if your DD is 17, she is old enough to be in any Teaching Hospital. A teaching hospital is one affiliated with a Medical School. She will get the highest quality care in a teaching hospital. GL to her!

[Melinda S in TX]

@Melinda  if your DD is 17, she is old enough to be in any Teaching Hospital. A teaching hospital is one affiliated with a Medical School. She will get the highest quality care in a teaching hospital. GL to her!

 

The teaching hospital in our town would not take Rebekah in October.  They said her mast cell activation syndrome was too complicated and so little is known about mcas that they didn't feel equipped to treat her.  She has been seen in their allergy department by two different doctors and both did a test or two and said they couldn't help her.  The endocrinologist told her it was all in her head.  When I asked about the test results being out of the range, he screamed at us.  This is a huge teaching hospital with clinics all over our state.

 

The actual hospital that did take Rebekah in October was another teaching hospital.  Rebekah saw specialist after specialist and none of them could figure anything out.  When I would give them research from their medical journals, they would ignore it.  They put in a feeding tube, got her weight up a few pounds, and discharged her.

 

The best help we have found for Rebekah is finding people online that have her illnesses and going to their doctors.  But her illnesses are rare and the few doctors that know anything about it are in high demand.  Our family doctor has been wonderful, ordering any tests we need and making referrals.

[Jean in Newcastle]

((Melinda))  I think that is the way it is with illnesses that are not well understood.  It's really hard for people who haven't had that experience to understand because it seems logical that the teaching hospitals and the well known places would naturally be the place to go.  And they probably are in most cases.  But it sounds like not in your dd's case. 

[ElizabethB]

:grouphug:

 

My food allergies are pretty crazy, for a while I was on a down to 20 foods on a rotation diet with various wild game meats and a variety of less commonly eaten starches like sweet potatoes, taro root, jeruselem artichoke, etc. (If you have never eaten a food before, you should not be allergic to it unless it is a close food family member like pheasant/quail.). I got my meats from exotic meats and dartagnon, the starches and vegetables from asian and other ethnic markets. I have also recently found that I do better with filtered water.

 

We have a friend who is an ENT, and when my food allergies got their craziest, he recommended I go to Allergy Associates in LaCrosse, WI. Their allergy drops have helped me be able to eat a few more foods and have helped my overall energy levels a bit as well.

 

I will keep you and your daughter in my prayers, I know what a battle this can be. I also react to VOCs and perfume. I use vinegar and oxygen bleach now for cleaning, or just water and ivory dish soap.

[Lanny]

Melinda I read the information in post #73 and am disappointed that the doctors who have seen her have no clue.  Hopefully, there is somewhere in the states a doctor, if not a teaching hospital, with some experience in treating patients with these issues. If/when you find him/her, hopefully she will get healthier.  Sometimes things are in ones head, but other times, they are caused by physical issues which are more mysterious and/or not understood by medical professionals.  I am sad that she is experiencing these issues and suffering and obviously in danger, with repeated trips in an ambulance to the E.R.  GL to her and to you in finding someone who can help her!

[Mama Geek]

I have nothing to add but  :grouphug:

[Melinda S in TX]

I have ignored this friends email.  It's highly unlikely I will see her anytime soon, but she won't forget and when I do see her she'll want to talk about it.

[OneStepAtATime]

I have ignored this friends email.  It's highly unlikely I will see her anytime soon, but she won't forget and when I do see her she'll want to talk about it.

:grouphug:  :grouphug:  :grouphug:

[Valley Girl]

I have ignored this friends email.  It's highly unlikely I will see her anytime soon, but she won't forget and when I do see her she'll want to talk about it.

 

Then you have time to prepare to deflect her. Practice some responses now so that you get comfortable enough to remember them in the moment. Good luck!

 

"I'm sorry, but I don't want to discuss DD's medical issues. How was your holiday?"

 

"We're satisfied that DD's doctors are doing everything they can for her. How is your family doing?"

 

"As I said, I prefer not to discuss DD's condition."

 

"You've given that advice many times. I did hear you. We are doing what we feel is best."

 

"I'm sorry, but I have to go now."

[vonfirmath]

*hugs*

[Spryte]

I'm so sorry you're going through this, and hope that you find answers for your DD very soon.  It is hard to live with something that is undiagnosed - it makes people around you very uncomfortable.   :grouphug:

 

As for your "friend"...

 

 

Then you have time to prepare to deflect her. Practice some responses now so that you get comfortable enough to remember them in the moment. Good luck!

 

"I'm sorry, but I don't want to discuss DD's medical issues. How was your holiday?"

 

"We're satisfied that DD's doctors are doing everything they can for her. How is your family doing?"

 

"As I said, I prefer not to discuss DD's condition."

 

"You've given that advice many times. I did hear you. We are doing what we feel is best."

 

"I'm sorry, but I have to go now."

 

I think this is excellent advice.  DH and I call this coming up with comments to keep in our back pocket.  We use them when dealing with the boundary challenged people in our lives, and we did/do use them re: my own health issues.  We even go over them before stressful events where we feel they might be needed.  We could also call it How to Change the Subject 101.  :)  We aim for polite, but if someone keeps at it, we just aim for halting the nonsense.

[Tiramisu]

When my dd was sick that year or two of high school, we got a lot of comments like that. One particularly good friend and her son (dd's bf at the time) tried to tell us it was all in her head, and that she would "crash and burn" in college due to her mental problems. It took some to figure out what was going on, but when we did, it was certainly not something she could have made up. She has a pituitary issue and elevated levels of auto-antibodies. She has a "connective tissue difference" that might be EDS, and probably POTS, too. But she is a lot better now and medicated for the autoimmune stuff, which seems, strangely, to have helped the endocrine issues. She is also halfway through her junior year of college and so far she has not "crashed and burned," even though her programs is down to half the number of people who started. It's been a tough road but it has made dd strong.

 

I had POTS for about 13 years before it was diagnosed. I understand your dd's struggles even though I or dd never personally had to deal with that degree of illness. All I can offer is hugs.

 

I have a feeling things might turn around if you can get the MCAS under control.