Jump to content
Goodbye Jesus

My Daughter Has Pots


Ro-bear

Recommended Posts

 

MikeGlass, this is a place for Ex-Christians, many still recovering from the damage done by religion. 

 

Ye shall not post the Bible, neither shall ye preach.

 

You may spew some bullshit in the Lion's Den if you wish. Keep in mind, we already know the Bible, have experienced Christianity, and ultimately rejected it for good reason.

 

Got it?

Who was preaching? I offered this man, who said he and his daughter was suffering a way to be healed. If your positions on here are so valid and true, why did you remove my post? If you are right, then you should be able to defend yourself without any problems.

 

 

Don't be a douche bag. If the man wanted religious drivel, he would have gone to a religious website. 

  • Like 3
Link to comment
Share on other sites

  • Super Moderator

 

MikeGlass, this is a place for Ex-Christians, many still recovering from the damage done by religion. 

 

Ye shall not post the Bible, neither shall ye preach.

 

You may spew some bullshit in the Lion's Den if you wish. Keep in mind, we already know the Bible, have experienced Christianity, and ultimately rejected it for good reason.

 

Got it?

Who was preaching? I offered this man, who said he and his daughter was suffering a way to be healed. If your positions on here are so valid and true, why did you remove my post? If you are right, then you should be able to defend yourself without any problems.

 

 

There are rules that need to be observed.  You brought scripture and verse into a forum where it is forbidden.  You should have educated yourself about the rules of this forum before you started posting.  To everything there is a time (and place). 

  • Like 2
Link to comment
Share on other sites

 

MikeGlass, this is a place for Ex-Christians, many still recovering from the damage done by religion. 

 

Ye shall not post the Bible, neither shall ye preach.

 

You may spew some bullshit in the Lion's Den if you wish. Keep in mind, we already know the Bible, have experienced Christianity, and ultimately rejected it for good reason.

 

Got it?

Who was preaching? I offered this man, who said he and his daughter was suffering a way to be healed. If your positions on here are so valid and true, why did you remove my post? If you are right, then you should be able to defend yourself without any problems.

 

 

What method of healing did you even offer (I completely missed it before it was deleted)? Was it healing through faith in Jesus Christ? If so, then no wonder the post got deleted. If you decide to tell me, then I would not recommend repeating it here. Maybe messaging me would be the best course of action.

 

To Ro-bear: I hope your daughter gets the treatment she needs and makes a full recovery. I wish you and your family the best of luck.

Link to comment
Share on other sites

The best thing you can do right now is don't freak out. Your daughter will be relying on you to be positive and upbeat as much as possible. This really sucks but you have to be strong. If you need someone to talk to and vent with, you can contact me directly or let us know in this forum. You're not alone in this, OK?

 

It appears that there is no one medication or therapy that works for everyone who has POTS. I'm afraid you're in for a potentially long run here. The good news is that there are potential remedies that can be tried. You're just gonna need to hang in and hope that you land on the right one sooner rather than later.

 

I don't know where you live but a lot of states have really good homeschooling programs that include meeting with teachers etc so that the burden of education does not fall on you. This will keep her active and keep her from going stir crazy if she can't get out of the house much.  

 

If you need to raise funds to help care for your daughter, you should set up a Crowdfund site send the link to everyone you know. I would certainly contribute as would many others here (as well as other friends and family). The financial aspects of this can be alleviated through one of these sites. I have used one in the past. Basically, you set it up along with a PayPal account and the site takes a small percentage of the funds that have been raised.

 

If you need help setting this up, let me know. 

 

I'm so sorry to hear about this Ro-bear. Remember that you are not alone in this. Please keep us informed on your daughter's condition.

Thank you.  I'm better today.  Shock has faded, and facing it is what I'm working on.  You are exactly right about my having to stay positive for my daughter.  This is harder on her than anyone.  She has always been an honor student, and now she can't go to school or deal with the backlog of work that must seem like a dam about to burst to her.  I'll be strong for her and probably a weakling with you guys.  I have a lot to process.

Link to comment
Share on other sites

Don't be too mad at Mike.  He PMed me, and I think he means well, though he clearly doesn't understand the nature of this forum.  You have rightly chastised him, and he has rightly used PM instead of the forum. 

 

You guys know me well.  I am a secular man who seeks secular solutions.  If I thought there were a god, I'd have addressed this matter with it already.

Link to comment
Share on other sites

  • Moderator

Sorry, Ro.  Hopefully she'll outgrow it.

Link to comment
Share on other sites

  • Super Moderator

You know the homebrewer's code: relax, drink a homebrew.  I'll heft a glass to you and yours tonight.

  • Like 1
Link to comment
Share on other sites

Hi ya Ro Bear

 

Here is just a random collection of my thoughts at the moment. I have ulcerative colitis which is an auto-immune type condition. And my 20 year old daughter looks like she also has it.

 

As your daughter is 17, I presume she is close to the end of high school and would be thinking about going on to uni (I presume this because I remember that you are a high school teacher yourself - and your demographics suggest your daughter will go to uni.)

 

There is probably a need for her to think through her career plans again and come up with an option that is suitable for a slow part-time lifestyle - as well as a fast paced full-time career should she get back to being well enough for a fast-paced life.

 

Don't know how uni works in the US. But in Australia, we have access to quality distance education through our major universities with no need to matriculate. This would actually be available to your daughter in the US (but at a higher cost). Here is a link - just in case it proves useful.

http://www.open.edu.au/future-students/

 

The are probably on-line forums for POTS sufferers as well as Facebook pages. These can be useful for bringing people together - in fact my specialist once said that he functions as a clearing house to transfer info between suffers.

 

There is quite a bit of depression that can come of temporary phases of well-being, where the sufferer feels better for a while and starts to make "New Years resolutions" - only to fall in a heap again. Easy to blame yourself for lack of willpower and determination in that situation. So .. your role might be to slow the pace of picking up the pieces of a former life when one of these "well" periods occurs.

Link to comment
Share on other sites

Hey Ro-Bear -

 

First of all, hang in there man.

 

If your daughter is still a student, you can have a plan crafted at the school that can allow her to function as a student yet also accommodate her symptoms. I saw that people with POTS do better in the afternoon - setting up an afternoon schedule and having some independent study in the morning might be a help. Set up an appointment with a school counselor and make a plan. (Also see if such a plan continues through college - in California, a 504 plan continues beyond k-12 education.)

 

Good luck to you and your daughter, and keep plugging away.

Link to comment
Share on other sites

Ro-Bear... thanks for sharing. I'm sorry you're facing this.

 

I have a couple of suggestions that you may want to discuss with your doctor. First of all, physical therapy. My therapist is able to get muscles to release and make nerve connections that I did not even know were part of my structural problem. It's so interesting, and I wish I had started many years ago before my body got into the rut it's in. I have also learned various stretches and exercises to work on problem areas and my body as a whole. Since the Mayo Clinic site suggested exercise, I'm thinking having a professional work on her muscles and blood flow might be the little extra nudge that makes all the difference. I don't know -- but it's worth asking.

 

Second, have you considered or asked about using an inversion table? The first few times there is nausea and dizziness because you are forcing blood into areas that are not used to it, and loosening up some bowel stagnation, but it goes away about the third time. (Take it slow to start, and stay with her the whole time, and give her 10 minutes to recover horizontally before getting off the table.) I have no idea if this is appropriate for your daughter's condition or not, but it's an idea to try to get blood going. Please ask about this first, because I don't know if rushing blood to the top of her body would be an amazing therapy or would really make things worse. The tables are inexpensive enough these days (around $100), so if your doctor approves, it might be worth a try.

 

As for potential depression... make sure she is getting sunlight, without sunglasses. Getting the light onto the retina somehow triggers the brain, and is important especially this time of year. Can you take her for a walk or bike ride or something? Outside. Also, make sure she is getting complete nutrition, including oils to help feed her brain and keep her hormones flowing properly. (As if being a teenage girl isn't hard enough, right?) There is a book I can recommend that helps with this for women: The Triple Whammy Cure, if you're curious about some building block nutrients to at least keep her brain physically nourished while she deals with the emotional stuff.

 

Honestly, Ro-Bear, I don't know. Just throwing out some ideas, hoping something will make a difference. Be strong, dad! Keep us posted.

Link to comment
Share on other sites

Oh, wow, what saddening news. Who wouldn't go into shock after something like that happened? You've got a lot of great advice in here.  I don't really have much to offer but my sympathies.  If you do start a crowdfund site, please link us and I will gladly give some. And definitely makes sure she gets some sunlight and keep some greenery near her, that always helped me with depression (though my depression was different but it did start out situational, which is what hers would probably start out with if it happens at all). It is good that this might can go away or ease up and hopefully will. I'd never heard of it before. (hugs) 

Link to comment
Share on other sites

  • Moderator

Ro-bear, My thoughts are with you today as you face this challenge.

 

Wow, the members on this board are amazing with some of the information they've put out. What a wonderful bunch of people. I know you will do all the right things to support your family. Some of the shit we have to go through in life is very hard. It doesn't seem fair at times, does it? It does seem as though there are some good options here with this diagnosis of 'POTS". That's a bit of good news hopefully.

 

 I just want to wrap my arms around the whole family today and give you all a big hug.

 

Please keep us posted on how it's going and you......you take good care of yourself in the process, my friend.

 

Sincerely......

Link to comment
Share on other sites

How terrible, Ro-bear, I am so sorry to hear this.  As a retired HS principal, I would think that her school, or the district, will do all it can to help out her studies.  My nephew had a different problem, and they sent a very good tutor to the house... but I'm sure you know about this.  Anyway, all best for some peace for all of you in the midst of this.  Hugs, F

Link to comment
Share on other sites

Thank you.  I'm better today.  Shock has faded, and facing it is what I'm working on.  You are exactly right about my having to stay positive for my daughter.  This is harder on her than anyone.  She has always been an honor student, and now she can't go to school or deal with the backlog of work that must seem like a dam about to burst to her.  I'll be strong for her and probably a weakling with you guys.  I have a lot to process.

 

 How you all doing today Ro?

Link to comment
Share on other sites

  • Super Moderator

I've hoisted a glass for you each night this week, my friend.

Link to comment
Share on other sites

 

Thank you.  I'm better today.  Shock has faded, and facing it is what I'm working on.  You are exactly right about my having to stay positive for my daughter.  This is harder on her than anyone.  She has always been an honor student, and now she can't go to school or deal with the backlog of work that must seem like a dam about to burst to her.  I'll be strong for her and probably a weakling with you guys.  I have a lot to process.

 

 How you all doing today Ro?

 

We are struggling.  She hasn't been out of bed for days.  Almost lifeless.  Very discouraged.  We are going homebound for term, maybe longer.

 

Thanks to all for generosity and good wishes. I don't have time right now to thank you all adequately.

Link to comment
Share on other sites

  • Super Moderator

My thoughts are with you, brother.

Link to comment
Share on other sites

I'm sure you have got a second opinion and have gone through the ruling out phase, lots of lab work , cardiac testing, pulmonary function tests, etc if not I would enc . it. All past med history is imp, even minor stuff, colds, bites , etc. All personal issues, such as sexual activity, stress, reasons she may not want to be out among her peers, everything and anything that may be minor may be imp. Also I agree with Physical Therapists  who are trained with orthostatic hypotension patients. I only say this as I speak from experience, not in pots itself but many illnesses, conditions, can easily be confused with each other.  Good luck, I wish your family well, and chances are she will recover from this.

Link to comment
Share on other sites

I'm so sorry to hear about what has happened to your wonderful daughter.  Give her lots of hugs from all of us, please.  I'm sending (((hugs))) too.  

Link to comment
Share on other sites

Oh man that is tough news about your daughter, Ro Bear.

I hope your daughter receives all the help she can and somehow things can turn around for her and she can recover. I really hope that will be the case.

 

Hang in there. Sending hugs and kind thoughts to you and family.

Link to comment
Share on other sites

 

 

Thank you.  I'm better today.  Shock has faded, and facing it is what I'm working on.  You are exactly right about my having to stay positive for my daughter.  This is harder on her than anyone.  She has always been an honor student, and now she can't go to school or deal with the backlog of work that must seem like a dam about to burst to her.  I'll be strong for her and probably a weakling with you guys.  I have a lot to process.

 

 How you all doing today Ro?

 

We are struggling.  She hasn't been out of bed for days.  Almost lifeless.  Very discouraged.  We are going homebound for term, maybe longer.

 

Thanks to all for generosity and good wishes. I don't have time right now to thank you all adequately.

 

 

Ro - Do you need financial help? Let us know what we can do.

Link to comment
Share on other sites

Ro Bear, I have an idea for moral support for your daughter. Does she have a favorite teacher, or the leader of her French club or anything like that? Maybe you could ask this person to get her friends and fellow students to do a card campaign, where everyone takes a minute to write / make a card. Either delivered to your house by one person, or mailed the old fashioned way -- something tangible and not electronic. (Well, electronic might help, too, but actual cards might make a bigger impact.) Or maybe ask the home-ec class to make brownies or something -- anything! Or the art class to make something. Or a video of the drama club rehearsing or the band practicing, and they all yell out her name at the end. Whatever resources you can grab on to.

 

She is suddenly completely out of her loop, and that can be disheartening. We all know looking back that high school is so temporary and not important once we get out in the real world, but for her, it's everything right now. Don't let her feel forgotten or uncared for by her peers -- who probably don't know what to do to help. It might make her fel bad for all she is missing, but I get the feeling that is better than feeling lonely and forgotten?

  • Like 2
Link to comment
Share on other sites

Our next step is to see a specialist at Vanderbilt.  This can't go on.  She is in bed most of the day, on the couch for the rest.  It takes her an hour to recover from the effort of showering.

Link to comment
Share on other sites

(((Hugs))) to your family, Ro-bear.

 

I did a bit of research on POTS, and found this:

 

In people who have POTS, the blood vessels are too relaxed. Extra fluid is needed to fill the vessels and allow blood to flow properly. But drinking extra fluids alone isn't enough. Increased salt intake is necessary to hold the fluid in the blood vessels. It's also important for people with POTS to avoid caffeine and alcohol.

 

What will help most, though, is regular exercise. Engaging in daily, moderate, aerobic exercise in an upright position — walking or biking, for example — not only improves fitness and increases energy, it also works to retrain the autonomic nervous system to regulate blood flow correctly. The key is to start small and progress slowly to about 30 minutes of exercise each day.

 

A variety of medications are also available to treat POTS. They include drugs that block blood vessel relaxation, help tighten blood vessels and smooth nerve transmission.

 

In addition, many teenagers with POTS benefit from professional psychological counseling to help them deal with anxiety or other complicating factors, manage the depression that can result from the effects of POTS, or simply cope with a chronic condition.

(From the Mayo Clinic website, http://www.mayoclinic.org/medical-edge-newspaper-2010/jun-11a.html)
Link to comment
Share on other sites

Guest
This topic is now closed to further replies.
×
×
  • Create New...

Important Information

By using this site, you agree to our Guidelines.