I need to send a hard email

[Melinda S in TX]

I need to send an email, but I don't know what to say.  Or maybe I shouldn't say anything, but that doesn't deal with the problem.  No matter what I say, unless I do what she says, this friend (the wife) will be offended.

 

17dd is very sick and has been for a little over three years.  We have been seeing doctor after doctor trying to find out what is wrong with her and what we can do to help her recover.  We have several diagnosises.  Some are rarer than others, but they are not your mainstream illnesses.

 

We have some friends.  We don't see them often, but I know if I needed help, they would come.  Dd has been having a very rough week.  Monday I had to administer her epipen and then she had an ambulance ride to the ER.  Tuesday she had another reaction and was transported via ambulance to the ER.  Wednesday we had a consult with a gastroenterologist.  Today we spent half the day getting fluids and then went to get her ng tube (tube from nose to stomach) changed to an nj tube (tube to intestines).  I have been updating on CaringBridge and then I receive an email from my friend.  She said she wanted to restate her husband's opinion(her husband was a doctor and just recently retired on disability) that I should take dd to a well known children's hospital in our state, admit her, and leave her there.  She says it will be hard, but I need to trust their advice and the doctors at the children's hospital.

 

I'm mad and all I can think is that this is the most idiotic thing I have ever heard.  I wouldn't leave a person having a normal illness in the hospital alone with noone to advocate for them, let alone someone with rare illnesses.

 

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.

Edited December 18, 2015 by Melinda S in TX

[kewb]

My 2 cents. Your friend is trying to be helpful. You are in a very stressed out place right now.

Now is not the time to be addressing advice given by friends. Remind yourself she is trying to be helpful and focus on what matters. Your child and being her advocate.

[JumpyTheFrog]

I have a chronic illness and a friend with a daughter in a similar situation to your daughter. None of us owe anyone an explanation for what medical decisions we make. If your friend continues to offer unsolicited advice, I would just say something like, "I understand you are worried about my daughter, but I don't wish to discuss our treatment plans." Rinse and repeat. Eventually she'll either take the hint and stop offering suggestions or you'll have to re-evaulate if you wish to continue as much contact with her.

[cjzimmer1]

I would probably say something like this

 

Dear friend,

 

Thank you so much for your concern for DD.  I appreciate all my friends who have a vested interested in helping her get better.  I appreciate your (or your DH's) suggestions, however right now DD is at a place where she absolutely needs to be with with her family.  Her mental well being is just as important as her physical well being and I fear that a separation of the kind you are suggesting would be detrimental to her at this time.  Thanks so much for your concern and please keep us in your prayers.

[gardenmom5]

I would probably just ignore her suggestion.  as you said - unless you comply with her wishes, she'll be offended.

 

don't try and teach a pig to sing- it wastes your time and annoys the pig.  iow: don't waste your time.  if you see her in person, and she (again) makes the suggestion, just say "thank you for your concern.  we are working with her team of specialists." then pass the bean dip.

 

(we have a good children's hospital here. . . . . 1ds was diagnosed by a chiropractor.  the hospital HAD the x-rays showing his fractured spine, but they ignored it becasue it was healed. it was pinching a nerve.  the ped-neuro put him on a drug he'd probably  have to take every day for the rest of his life (if he didn't take it, he would get *progressively* sick.including the vomiting at a 1/4 tsp of water.) - that left me concerned about it's safety, as well how long it would continue to work.  the chiropractor did one adjustment a month while he was growing - and he never had an incident again.)

eta: my point being - children's hospitals don't know everything.

Edited December 18, 2015 by gardenmom5

[ThisIsTheDay]

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

 

I would do nothing. It's not worth the effort, and I agree with the PP that you can continue to focus your attention on your dd.

 

My question though is why would she suggest *leaving* your dd?  What advantage is there in that?  (Is she implying that you're the cause of this?)

[Alte Veste Academy]

I wonder if "leave her there" means keep her there, staying with her, basically staying at the hospital with her as an inpatient until you have an answer. Of course, doctors/hospitals determine admitting and discharging criteria last time I checked, so I'm not sure how that would work. At first I read it the way you interpreted it, but that's just crazy, so I wondered if she meant the less crazy (but still unsolicited) advice. Either way, I would probably just ignore/delete her email.

 

:grouphug: I'm sorry you guys are going through this.

Edited December 18, 2015 by Alte Veste Academy

[UCF612]

((HUGS)) I'm sorry you guys are going through this!  My friend's daughter has a lot of the same things and it is a daily struggle for them.  I would either ignore this person or say "Thank you, we'll keep your ideas in mind." End of story.  I can't imagine advocating for LEAVING her alone in the hospital? Why?  What benefit would that have beyond your daughter feeling completely abandoned and you feeling awful and nervous?  

[UCF612]

I wonder if "leave her there" means keep her there, staying with her, basically staying at the hospital with her as an inpatient until you have an answer. Of course, doctors/hospitals determine admitting and discharging criteria last time I checked, so I'm not sure how that would work. At first I read it the way you interpreted it, but that's just crazy, so I wondered if she meant the less crazy (but still unsolicited) advice. Either way, I would probably just ignore her comment.

 

:grouphug: I'm sorry you guys are going through this.

 

I hope this is what she really means!

[poppy]

Don't reply. 

I think she probably meant "leave her there (until you get answers)", not "leave her there (and go away)".  But I haven't read it.

 

Maybe write the reply you want to write- as catharsis- then delete. But I can't see any good coming from saying anything back.

[Annie G]

It kind of sounds like she's suggesting you are somehow contributing to your dd's issues.  Do you think that it's possible she's suggesting that?

 

:grouphug:

 

I'm sorry you are dealing with this. 

[Catwoman]

I would be too angry with this friend to even consider worrying about her feelings.

 

I know some people are going to think I'm mean for saying that, but it's how I would feel.

[Jan in SC]

I would guess that she means- stay there until they figure out the issues. If she doesn't, that's just- wow!

 

You don't owe anyone, including a close friend, an explanation of your choices of healthcare for your daughter. Well- you owe your daughter that information. If meeting with a well respected children's hospital isn't something you have done, then I would consider it.

 

I'm sorry that your daughter is having so many issues. That has to be terrifying on a daily basis.

Edited December 18, 2015 by Jan in SC

[Janie Grace]

I am so sorry your dd (and you, by extension) is going through this. It sounds AWFUL. I can't even imagine.  :grouphug:

 

My response would be, "Thank you for your concern. I so appreciate your love for dd and our whole family and I know your dh has a great deal of wisdom. I am confused by your suggestion to leave dd; leaving dd anywhere is the farthest thing from our minds. Can you help me understand that? Thank you for the suggestion of XYZ Hospital. We will take it into consideration." 

 

OR, if you don't want to discuss this with her at all (and really don't care what she meant by that bizarre suggestion), I think the "thank you but we do not wish to discuss her medical treatments; thanks for understanding" approach is fine. 

[Reefgazer]

I bet she means well; so take in the spirit in which it was intended and keep your own counsel on the matter.  Why is it important to your friend that you leave our DD there?  Is this hospital suggestion one that might help your DD?  I can see her promoting a particular hospital, if they have insider knowledge.  But FWIW, I wouldn't leave anyone alone either in a hospital these days.

I need to send an email, but I don't know what to say.  Or maybe I shouldn't say anything, but that doesn't deal with the problem.  No matter what I say, unless I do what she says, this friend (the wife) will be offended.

 

17dd is very sick and has been for a little over three years.  We have been seeing doctor after doctor trying to find out what is wrong with her and what we can do to help her recover.  We have several diagnosises.  Some are rarer than others, but they are not your mainstream illnesses.

 

We have some friends.  We don't see them often, but I know if I needed help, they would come.  Dd has been having a very rough week.  Monday I had to administer her epipen and then she had an ambulance ride to the ER.  Tuesday she had another reaction and was transported via ambulance to the ER.  Wednesday we had a consult with a gastroenterologist.  Today we spent half the day getting fluids and then went to get her ng tube (tube from nose to stomach) changed to an nj tube (tube to intestines).  I have been updating on CaringBridge and then I receive an email from my friend.  She said she wanted to restate her husband's opinion(her husband was a doctor and just recently retired on disability) that I should take dd to a well known children's hospital in our state, admit her, and leave her there.  She says it will be hard, but I need to trust their advice and the doctors at the children's hospital.

 

I'm mad and all I can think is that this is the most idiotic thing I have ever heard.  I wouldn't leave a person having a normal illness in the hospital alone with noone to advocate for them, let alone someone with rare illnesses.

 

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.

 

Edited December 18, 2015 by reefgazer

[Jean in Newcastle]

If I absolutely had to reply, I would say what I have said in the past to well meaning people:  "My daughter's condition is being treated by a team of doctors who have access to all the data needed to diagnose and recommend treatment.  I appreciate your concern and recommendation.  We will consider it and will discuss it with her doctors if warranted.  We would appreciate your prayers as we proceed but would rather have further recommendations come through the team of doctors we already have." 

[ErinE]

I am not in your situation, but I think your friend means keep her continuation of care at this hospital. 

 

If you are struggling to find a diagnosis for your dd, going to an elite children's hospital in your region might be the best choice. A close relative worked at a world-renowned children's hospital (there was a significant international patient base), and the doctors there have seen more unusual cases in a year than any local doctor could see in a lifetime. Why? Because that's where the unusual cases go when good, but less experienced doctors can't solve the problem.

 

I wouldn't respond to your friend's email, but I would consider her advice. One of the first things DH and I do when it comes to care for our children is we ask our doctors, "Where would you go?"

[Jean in Newcastle]

I do want to say that I agree about considering going to a well known children's hospital.  My experience is that they are not easy to get in.  We needed a referral and even then we were triaged (even with a possible brain tumor) and had to wait to get into specialists.  But once you are a patient of any of the doctors you are expedited for any further care and treatment is coordinated with other doctors at the hospital.  (I don't know if it is like this at all children's hospitals but it is at our local well known children's hospital.)

[Melinda S in TX]

I would do nothing. It's not worth the effort, and I agree with the PP that you can continue to focus your attention on your dd.

 

My question though is why would she suggest *leaving* your dd?  What advantage is there in that?  (Is she implying that you're the cause of this?)

 

 

I wonder if "leave her there" means keep her there, staying with her, basically staying at the hospital with her as an inpatient until you have an answer. Of course, doctors/hospitals determine admitting and discharging criteria last time I checked, so I'm not sure how that would work. At first I read it the way you interpreted it, but that's just crazy, so I wondered if she meant the less crazy (but still unsolicited) advice. Either way, I would probably just ignore/delete her email.

 

:grouphug: I'm sorry you guys are going through this.

 

 

((HUGS)) I'm sorry you guys are going through this!  My friend's daughter has a lot of the same things and it is a daily struggle for them.  I would either ignore this person or say "Thank you, we'll keep your ideas in mind." End of story.  I can't imagine advocating for LEAVING her alone in the hospital? Why?  What benefit would that have beyond your daughter feeling completely abandoned and you feeling awful and nervous?  

 

 

Don't reply. 

I think she probably meant "leave her there (until you get answers)", not "leave her there (and go away)".  But I haven't read it.

 

Maybe write the reply you want to write- as catharsis- then delete. But I can't see any good coming from saying anything back.

 

 

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.

[TammyS]

For the immediate...I would ignore her altogether. 

 

Once things are better, regardless of how long that takes, you can decide how you want to respond.

 

But for now, you don't owe her an explanation or even a response.

 

 

[TranquilMind]

I need to send an email, but I don't know what to say.  Or maybe I shouldn't say anything, but that doesn't deal with the problem.  No matter what I say, unless I do what she says, this friend (the wife) will be offended.

 

17dd is very sick and has been for a little over three years.  We have been seeing doctor after doctor trying to find out what is wrong with her and what we can do to help her recover.  We have several diagnosises.  Some are rarer than others, but they are not your mainstream illnesses.

 

We have some friends.  We don't see them often, but I know if I needed help, they would come.  Dd has been having a very rough week.  Monday I had to administer her epipen and then she had an ambulance ride to the ER.  Tuesday she had another reaction and was transported via ambulance to the ER.  Wednesday we had a consult with a gastroenterologist.  Today we spent half the day getting fluids and then went to get her ng tube (tube from nose to stomach) changed to an nj tube (tube to intestines).  I have been updating on CaringBridge and then I receive an email from my friend.  She said she wanted to restate her husband's opinion(her husband was a doctor and just recently retired on disability) that I should take dd to a well known children's hospital in our state, admit her, and leave her there.  She says it will be hard, but I need to trust their advice and the doctors at the children's hospital.

 

I'm mad and all I can think is that this is the most idiotic thing I have ever heard.  I wouldn't leave a person having a normal illness in the hospital alone with noone to advocate for them, let alone someone with rare illnesses.

 

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've been dealing with getting a kid well too, though not to that degree.  Goodness.  I don't think this is a hard email.  This woman is way overstepping her bounds.  To suggest this hospital is fine.  To tell you what to do is way beyond her pay grade.

 

No one with a brain cell would leave a kid unattended in a hospital.  Or anyone. Everyone needs someone watching and an advocate at all times. 

 

Thank her for her concern.  You appreciate that.  You hope she has a wonderful Christmas!    If you answer at all.  You are not obligated.  You have enough going on! 

 

I pray your daughter finds healing!

[Eagle]

No advice, I just wanted to give you and your dd hugs. :grouphug: :grouphug:

[Hilltopmom]

Except that not all Childrens hospitals specialize in all things. And some are known to take custody of kids with odd diseases through DSS intervention.

There are places that specialize in mast cell, I'd go there if you can.

 

Good luck with the J tube, one of my kids has one, it's not too bad to deal with:)

[Jean in Newcastle]

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

[chiguirre]

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.

I wouldn't reply to the email at all and I'd never open another one from this person. Just avoid her. You have plenty of stress in your life without dealing with this nitwit.

[bolt.]

Your friend might be heartfeltly-concerned (And for heaven's sake, there's a conceivable possibility that she's stumbled on a plausible diagnosis -- it's not like the body is completely independent of the brain and emotions... They are *supposed* to work interdependently.)

 

BUT!

 

Even in the imaginary universe where she is pure as snow, and a telepathic savant at diagnosis -- regardless of anything, she is *STILL* extremely rude, colossally arrogant, and offensively opinionated. You have every right to tell her to take her good intentions and shove them where the sun don't shine.

 

She is not an asset to your life, and you don't have any energy to spare in relationships that aren't any good for you right now. It's probably best if you never speak to her again.

[ErinE]

I agree with Jean. Since there's a history, I would just hit delete.

[TolleLegeAcademy]

I have not been on the board in a long, long time---but I came tonight to search for posts on how people deal with homeschooling a child with chronic illness; and your post was the first one that came up.  I just wanted to say that I am sorry for all of the struggles your daughter is facing and that I hope she begins to heal and grow stronger very, very soon!  I'm in a great POTS group on FB and many of the children deal with mast cell and EDS and gastroparesis in addition to POTS.  If you are ever in need of support, even from a distance, and are on FB the group is POTSibities Parents. 

 

I absolutely would not even respond to that email unless you just want to tell her in some way to mind her own business.  I'm sorry you are having to deal with someone like that on top of everything else.

[Melinda S in TX]

I am not in your situation, but I think your friend means keep her continuation of care at this hospital. 

 

If you are struggling to find a diagnosis for your dd, going to an elite children's hospital in your region might be the best choice. A close relative worked at a world-renowned children's hospital (there was a significant international patient base), and the doctors there have seen more unusual cases in a year than any local doctor could see in a lifetime. Why? Because that's where the unusual cases go when good, but less experienced doctors can't solve the problem.

 

I wouldn't respond to your friend's email, but I would consider her advice. One of the first things DH and I do when it comes to care for our children is we ask our doctors, "Where would you go?"

 

 

I do want to say that I agree about considering going to a well known children's hospital.  My experience is that they are not easy to get in.  We needed a referral and even then we were triaged (even with a possible brain tumor) and had to wait to get into specialists.  But once you are a patient of any of the doctors you are expedited for any further care and treatment is coordinated with other doctors at the hospital.  (I don't know if it is like this at all children's hospitals but it is at our local well known children's hospital.)

 

 

The problem is we can't find all the specialists dd needs at one place and almost none at children's hospitals.  We have a CaringBridge site where we keep everyone updated on our family (Hannah's cancer, Steven's cancer, and now Rebekah's health issues).  There is a family on there that has three daughters with almost all of Rebekah's problems.  They recommended things for us to research and that got us started with answers for dd.  Their doctor is one of the top US mast cell doctors, but he is a plane ride away and booking appointments for the end of 2016.

 

Dd cardiologist gets referrals from all over the US.  He is a very well known Pots specialist and is very thorough, but he is an adult cardiologist and has his own clinic.  He tried treating dd, but she reacted to all the medications.  He is willing to treat her once we get the reactions under control.

 

Dd geneticist is very familiar with all of dd's diagnosises and how they fit together.  He was the first one to explain how this happened.  He and dd's cardiologist collaborate and do a lot of research in this area.

 

There are about five allergists who specialize in mast cells in our state.  None of them are connected to hospitals.  Dd has seen three of them.  One is six hours away.  Dd doesn't travel well so he started treatment and helped us find someone closer to home.  We saw the doctor closer to home.  He agreed with dd diagnosis and started her on treatment, but he is booking appointments six months out.  Dd can't wait six months.  She can't wait six weeks.  We started with a new doctor, who again agreed with dd's mast cell diagnosis, and she is more available.  She is treating dd and is always available by phone or email.  Appointments are two weeks out.

 

Our family doctor diagnosed the Chronic Epstein Barr and has been so helpful.

 

The new gi we just met yesterday.  He is at our local children's hospital, but they only take referrals from inside the system.  We had to get my mil's doctor to take dd on as a patient so that she could refer dd to gi.  This doctor knows some about dd's other illnesses, but he is tentatively adding a new one.

 

When you have rarer problems, regular doctors aren't usually much help.  Dd went to three allergists associated with our state's children's hospitals.  One did a blood test, said dd didn't have mastocytosis and no other mast cell diseases existed.  Another allergist skin tested dd which was mostly negative.  She said dd wasn't allergic, but she couldn't explain why dd quit breathing when exposed to milk, eggs, etc.  It wasn't an allergy so she wasn't concerned.  The allergist when dd was hospitalized said dd did have some allergies, but they had nothing to do with her illness based on one bloodtest.  She also couldn't explain the asthma attacks and other reactions since dd wasn't allergic.  We had similar experiences with dd's other problems.

 

Our local hospital is a huge teaching hospital (with a children's hospital), and I'm sure they have some good doctors.  Our experience has been that they are more helpful in finding out not wrong than what is wrong.  We have had to find people who have dd's illnesses and find their doctors.

[Jean in Newcastle]

The more you write, the clearer it is that you have her medical situation handled as far as locating and pursuing good healthcare for her.  I'm so sorry that it is so difficult to get treatment for her and to discover exactly why her body is reacting like this.  :grouphug: :grouphug: :grouphug:

[zoobie]

Block the crazy lady from CaringBridge and your email. I hope you find some answers for your DD. :grouphug:

[Catwoman]

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.

Why do you think of that woman as a friend? :confused:

 

You have enough to worry about without having to deal with her!

 

.

Edited December 18, 2015 by Catwoman

[JumpyTheFrog]

Now I'm voting to ignore the "friend" or even dump her. If anyone was that obnoxious to me about my illness I'd probably have to kick then out of my life.

[AngieW in Texas]

My 17yo dd just got her EDS diagnosis a few months ago. She also has POTS.

 

The "friend" is insane. Ignore her. 

[Jan in SC]

After reading your update, just ignore the crazy woman!

[myfunnybunch]

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.

 

Friend is not a healthy person.

 

You do not have to respond to her email at all.

 

If you're feeling particularly kind, you could send a noncommittal "Thanks for your concern, friend. I appreciate that you care about dd." Full stop. You do not owe her explanation or justification, or really anything else.

 

Hugs. Anyone in your life who isn't able to say, in some way, "I am so sorry you're facing this struggle. How can I support you and dd?" is not really deserving of your time and energy right now.

[Plink]

Do not respond.  You will only feed the fire.

[prairiewindmomma]

Ignore the "friend".  You can't fix her type of crazy with rational information, nor do I think she'd respond to a gentle placement of boundaries. We have gone through similar experiences with our family's health issues.  Let it go, and spend your emotional energy on things that uplift and strengthen your souls.

 

Best wishes to you all!

[JumpyTheFrog]

OP, maybe something on this forum would be helpful. They have a section on mast cell disease. http://forums.phoenixrising.me/index.php

[Guest]

I do want to say that I agree about considering going to a well known children's hospital. My experience is that they are not easy to get in. We needed a referral and even then we were triaged (even with a possible brain tumor) and had to wait to get into specialists. But once you are a patient of any of the doctors you are expedited for any further care and treatment is coordinated with other doctors at the hospital. (I don't know if it is like this at all children's hospitals but it is at our local well known children's hospital.)

That's been our experience as well, and in reading through I'd assume that is what trend meant then the context. With complex presentations of unusual diseases you can spend weeks and months chasing your tail among specialists who are having a hard time coordinating. Much of that improves when you're in a bed at the facility for a longer period of time. Especially with frequent mast cell reactions you may have a good chance of getting in longer.

 

And yes, I'd leave even my five year old at the hospital and come visit daily if I had to, if it meant better treatment and more answers, faster.

 

Assume the best of he and don't send the email. Really. If she mentions it again I'd ask her to stop giving advice and just give hugs, but this sounds like the sort of situation where no good will come of a confrontation. Nothing in your post sounds like she is crazy, but you do sound extremely stressed and upset. Hold the email until you aren't :grouphug:

[Guest]

Read your second update! I'd doubly suggest ignoring friend and not engaging. She isn't worth the headache and probably won't listen anyway.

[lexi]

Ignore. She does not get to determine treatment options for your child.

 

Once things are more stable with your daughter and you feel less stressed, you can decide how to respond. I think I would personally not respond even then. I would just avoid this person and make sure that she did not visit or upset my daughter.

 

For now just focus on your daughter. She needs you and this friend is not proving to be sympathetic or helpful. So avoid/ignore. If she persists with emails I would simply tell her that you are currently working with a team of doctors and you would prefer not to discuss her treatment.

[bolt.]

Or, if you're going to offend her anyways, you might as well get some satisfaction out of it -- and she might get a little etiquette education from someone who isn't polite enough to withhold it from her at an emotional time.

[KungFuPanda]

That suggestion is so out there I'm not sure WHY you'd bother to respond. You can't fix weird with a conversation. It's pointless to waste your effort.

[ScoutTN]

I would ignore this "friend" entirely. Not open her emails or return calls or anything. Save your energy for getting your Dd the medical care she needs.

 

((hugs))

[wintermom]

You definitely have a lot on your plate, and lots of good people helping you. I'm so sorry so many of your family members have serious health issues right now. That must be really exhausting.  I would definitely NOT bother with any e-mails to this lady. She sounds like a real drain on you and your daughter's fragile energy. 

[Valley Girl]

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

 

 

No. Way. In. Hell.

 

Based on the additional information you provided, I'd delete her email and put her outside the information loop as much as possible. She may be well-intentioned, but as someone else already said, she's beyond arrogant and rude.

 

Do you trust your DD's doctors? Are they aggressively trying to get to the bottom of your child's illness? Are they referring you to the places and specialists you need? Then you don't need this know-it-all or her unhelpful suggestions. I'd be tempted to tell her "You've made your position on DD's illness clear. The experts who are responsible for her care disagree. I prefer not to discuss it with you anymore."

 

I'm so sorry your already tremendous stress is being compounded by this so-called "friend." I hope the new year brings you answers and treatments that help.

[momto10blessings]

"Friend" is not really a friend. I would get rid of her presence in my life immediately. Someone who suggests you abandon your child is not someone you need in your life.

Sorry.

[SparklyUnicorn]

I'm sorry, that is a lot to deal with.

I imagine she probably meant well.  If she has never experienced this situation, she cannot imagine how it feels and how she'd feel about such a comment if she were in your shoes. 

 

 

[chocolatechip]

What the heck?? I mean, what the heck??? Who suggests something like this??? 

 

I'm sorry, OP. Many hugs and prayers for you, your daughter, and family.