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PetuniasMom

Mad At The World

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Not too sure how to ask what is on my mind... we are now on the right track as far as medical appointments and a referral to an autonomic clinic. Until then, my daughter is in the care of an awesome cardiologist, I feel fortunate, and looked after to the best of his ability.

The problem I am having tonight, is dealing with it all. How do I tell my daughter that there is no magic pill... that she may not go back to school in September....that she may feel this way for a very long time. I think she is expecting that this referral to the clinic will be a "finally" for her - "finally, someone who knows how to fix me..." But, that isnt the case, is it.

I know that we can manage symptoms to the point of feeling much better, with the right medication and the assistance of the proper doctors. I guess I am just tonight reeling from the fact that my high-achieving, intelligent, athletic, got-the-world-by-the-tail daughter who very badly wants her life back, may not have her life-as-she-knew-it back ever. She may not be able to have a summer job, even next year...and what about her dream of going to University, she is struggling in a way she has never struggled before with brain fog issues, let alone the fact that she can't go to school right now, and will she even be well enough to leave home for further education? Is she disabled? Her quality of life has changed so drastically - how do I tell her, and help her deal with the loss...when we see all the things her friends are doing, and what they accomplish in a day, or where they go in a day compared to what my daughter is able to manage - we are happy if she has a shower and completes an hour of schoolwork in between Gatorades and blood pressure medication :(

I am so sad for her, and I don't know what to do. I am trying to stay positive, because I know she will take her cues from me, but man, sometimes it is just so hard.

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I can feel your sadness in your post..... I deal with it and have had CFS since my 20's but I had a good childhood, able to do what I wanted. I would be so sad to see a child have an illness. My son is grown and healthy.

I am so sorry, this may take several years for her. I don't think my POTS will ever go, like my CFS. I just hope they will keep improving.

Has she seen the videos with the girls with POTS? I have enjoyed them and helped me when I was first ill, before I could even travel four hours to see my Integraive doctor. That the the doctor that was able to help me. Most others knew very little. Lots of reading, and taking the supplements that have helped my symptoms, watching videos etc....all have helped me stay positive. Also, my great family and hubby.

She has you and that is wonderful. We all support you here.

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PetuniasMom,

I haven't written you yet and I plan to write more as we have been and are where you are, just having been diagnosed this winter. What I wanted to say tonight is to strongly encourage your daughter to join the Dynakids forum. They are a very positive group. They make room for feeling bad then help one another pull themselves up to keep going. Many of them have been and are where your daughter is right now and are now going to college. I have recently heard of some of them graduating law school, medical school and following their dreams, even though they may have a different path to get there than they expected.

I also think that as moms we absolutely hate to see our kids suffering and now you feel you have to be the one to help her face the reality. I struggle with this too! How do I communicate and balance optimism with reality (when I don't know what that is going to be from day to day). I am trying to think of what to recommend to my son for school next year and I have no idea what he will be able to do. Will he be able to stand for choir (I know they will accomodate him and allow him to sit but will he?) I can see him toughing it out then the rest of his day being trashed. Oh, well. I know that you get what I am saying. We have to do the best we can with today. I will tell you he could not get off the couch during the winter and now he is able to ride his bike most days for awhile, walk the dog, hang out with his friends. We did go through a period where he was really, really angry, but with help and prayer he is better. Some days better than others. Now is maybe a good time to work this out with her, without the pressures of school day to day. That really made things harder, even with him being homebound.

Feel free to PM me if you want.

Hang in there!

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With this condition there is a lot of reason for hope--but also patience. My specialist told me the average time of "recovery" (his term) is 4 years. Most people do get a lot better, according to the limited medical information available still on POTS, especially now that a variety of medical solutions are available. Furthermore, your daughter is quite young and patients who develop this at a young age have a higher recovery rate--again have seen this statement in multiple medical journal articles, etc. I think you and your daughter have a lot of reason to be hopeful that she will feel far better in the future, although it's true, she may need to manage symptoms/flare-ups in the long-term, at least from time to time.

I think it is also difficult for you when you log on to DINET and see so many others with this condition feeling so badly. This does not mean these patients are not in the long term going to improve. I have been on this forum now since 2003 and have seen MANY people come and go--the sickest tend to stay (b/c they need help) while the people whose symptoms essentially resolve or are controlled use the forum less. I am one of the latter, although I have stayed on. I was bedridden in 2002/03 and today I am quite functional with minor symptoms and occasional flare-ups.

I know how it feels to be quite ill with this. It takes a lot of strength to manage both the physical and emotional components of being so disabled. My heart goes out to you and your daughter. When I was sick (age 33/34) it was hard on my mother too, emotionally. Hope is really important and there is every reason to have it!

One book I suggest is Spontaneous Healing by Dr. Andrew Weil. It deals with severe illness and recovery in a very hopeful way. There are breathing exercises recommended in the book that I found particularly useful.

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It's hard to watch our children's lives turn upside down. I have a daughter who has learning disabilities and have helped and watched her struggle all through her school years. I know that having pots has changed my life. I have had it now for five years. There is a time for mourning what has been lost, but hopefully your daughter will be able to fill that void with something else. I have come to accept this as my life now and have made the choice to enhance my life as best as I can with this disorder. Almost a year ago I took up playing a digital keyboard and today a beautiful baby grand digital paino sits in my living and I spend hours on it each day. What joy music has brought back into my life. I don't know if I hadn't gotten ill that I would have taken the time to stop my busy life and explore this new avenue. I pray that your daughter will make the choice to accept this illness into her life and turn it into something positive for herself, whatever that may be.

God be with you in this journey,

Maggie

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Hello....My heart really went out to you when I read your post. There can be a lot of terrible days with this condition. But there is so much room for hope and possibility for your daughter. She is young and her body is stronger than an older person with this. Patience is definitely virtuous and it helps with this a lot. Whatever you can do to stay strong for her and research this condition would be so helpful. I got this very suddenly and I researched it like crazy. I can tell you some very small adjustments can make a very huge deal in the life of your daughter. Watch her and see when she feels the worse. Is there something that correlates with that? After a shower? Water could be too hot. After eating? Maybe something there. Could she wear compression garments? They have the toeless kind that are a little better but what a difference they make. Perhaps there is an underlying cause for your daughter's illness that you can research when you are up to it. That would make a huge difference as well....to find the root cause and treat it. But hang in there and take one day at a time. The dynakids is a great place for her. This is a hard spot you are in and it's so hard to see the light in all this but believe me it's there. Hang in there and saying prayers for you and your daughter.....Jared

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I have a 13y/o daughter with DYS, MCAS and Ehlers Danlos. She was born with this condition and before it got to the point of turning our lives upside down, she was very athletic, always on the go, and high achieving.

Life is a journey, those with this condition are taking a different path, they are not alone. The patch is rocky and takes some unusual sharp turns, but it will end up in the same place as every one else. Your daughter will succeed, she will have wonderful athletic and scholarly abilities. This path once embraced and not fought can be managed successfully. Take it slow (it will slow you down), work with her teachers on her educational 504/IEP plan, and forget the map. All roads along the journey end up in the same place. Our children will grow up and they can find careers to accommodate their abilities.

You won't have all the answers, but stay positive and always encourage her.

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I want to say thank you to each of you that answered my post. What an amazing group of people, tooer such an outpouring o support and information to a total stranger. I think i was overwhelmed when I read all of the replies, and truly didn't know what to say other than thank you...I needed to hear all of it.

And I'm off to start another post with some questions....

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so sorry you and others are going through this...I know how you feel; I'm going to a psych dr in a couple of weeks I just can't handle it any longer and it's affecting all areas of my life and I'm really afraid because my marriage has suffered greatly.

take care and hopefully you'll get some help soon

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