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Mad At Pots!


bkweavers
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Well, here we go again. My daughter is home again sick with a sore throat, cough, and the lovely dizziness that her POTS seems to bring on with the slightest virus! I can't tell you how frustrated I am for her. She had a bad relapse last fall and finally was getting back to part-time days at high school. It just never seems to end and right when she gets back into the groove and finally gets to have a little fun, Wham! Back to all the symptoms and lying in bed! I wish so badly I could just take this from her. My motherly heart sometimes just can't take it another minute!

Sorry but just had to vent and I know this is a place where I have people who truly understand what I'm talking about. I have friends and family who have been there for our family but even they don't understand what it's like to live for years on end with illness.

Thanks ahead for listening.

Brenda

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Brenda:

Oh I know how you feel!!! It is so hard as a mom watching your child suffer (even though my daughter is 23 years old). It is so hard going through the roller coaster of symptoms and emotions. There are days I just want to vent too!!!!

Please know that there are many "pots moms" out there who know what you are going through. Try and stay strong.

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Hi Brenda,

I don't know what it's like to have a child that has a chronic illness. However, I do have 6 kids (5 of them adults) and I totally understand your Mother's Heart. I'm sorry she has to deal with POTS and miss out on so much life and I'm sorry you have to see her suffer this way. Hopefully this will be a short set back and she'll be back on her feet sooner than in the past. I have experienced the same setbacks. I had a great 3 week period where I was able to work almost full time and even had energy to cook for my family and clean up the dishes before crashing. Then last week it got me again. My routine was different, I was in a class in a small room with 40 computers and 20 monitors. My guess is that the electromagnetic field got me. I wear a flat magnet that helps block the effects, but it got me good. I'm doing my best to get back to my regular routine and back to my normal self. The thing that really struck me is that when I start to feel good, its like my personality comes back. When I'm in a flare, I'm not the same person at all! I do hope that she will improve quickly, keep a positive attitude and I will lift her up in prayer!

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My heart breaks for you. As a mom, I can totally relate to that feeling of wishing you could take it on for her. (My daughter had cancer at 14 and at 20 she still has lots of medical issues to bear so I do really know how you feel in that regard.) Having POTS myself, I can totally relate to how frustrating it is to be finally feeling like you are making some progress and then WHAM! you're back to being incapacitated again. And as a mom and a POTS pt. I can see how hard it is on my family members to have to live with the same uncertainty that I live with and not be able to do anything about it.

It is indeed a very frustrating situation all the way around.

You're both in my thoughts and prayers.

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As a mom of a high school aged son with POTS I can relate. Unfortunately my son has never rebounded enough to make it back to school. He is currently a junior and has only attended 6 weeks since the middle of his 8th grade year. Hopefully this is just a bump in the road and she recovers enough to get back to school.

We will pray that she gets over this quickly!

Christy

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I just want to say to all of you POTS Moms, THANK YOU! Even though I am an adult, my Mom has been a pillar for me through this illness and you have no idea what it means to have that support from your Mom! It is nice to have support from others, but some how, when you are sick, it is your Mom you really want in your corner. I see how you all chase after answers for your children and it is just amazing to witness your love for them. I just want you to know it does not go unnoticed.

Katie

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Thanks Katie for the kind words for moms & to everyone else. I really appreciate the prayers! Last night and tonight, I took long walks as I told my husband that I have all this pent-up anger and I feel like punching walls! I'm really not a violent person but it just seems too much to bear. I'm really trying not to have a pity party for myself and my daughter but I just know that all of you on this forum are going through so many of the same things.

@Ramankentesh, I don't pretend to know exactly what my daughter and others with POTS go through but I do have debilitating migraines as well as other health issues myself so I do understand some of it.

@Christy, what does your son take for restless legs? Just curious since I have that.

Brenda

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Brenda:

I know what you mean about wanting to punch walls!! Keep taking those walks to help relieve the stress. You are obviously a great mom who is trying everything you can do for your daughter. I have to believe that there are better days ahead and that our children will be even more amazing than they already are after going through this.

Stay strong!!!

Pam

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Brenda, I'm so sorry to hear that Liz has had this setback. I know that anger that you're talking about! I do think that as moms, we feel our kids' pain even more than they do! I try to focus on the mantra "this too shall pass." And even if it doesn't really pass, we find ways to adjust and to cope. But hopefully in Liz's case, she'll bounce back quickly and will be right back in the thick of things at school.

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I can relate to your frustration, in our house we have 3 POTS patients ~ myself, my 20 year old son Chris & my 16 year old son Nathan. I have had POTS for apx 20 years, my older son has had it since 2009 his junior year and my younger son just started having symptoms in Sept.he is a sophmore. I have multiple health issues along with the POTS. When my boys first started having symptoms & they were in & out of the hospital the stress would cause me to go into a flare up which would put even more stress on my husband. There are a couple things I would like to recommend 1st is advice my older son gave me when his brother started having symptom ~ he told me to keep Nathan in School as much as possible even if it is only 1 to 2 hours a day & to try to stick with his normal routine as much as possible, 2nd make sure you take time for yourself (like when you took your walk) you need to destress so your daughter does not feel that she is causing stress for you (if she feels guilty her symptoms could worsen) I did want to mention your daughter may need to have her medications adjusted I have been able to stay on same med & dose for awhile now, but Chris has had to have numerous adjustments which the Dr warned us may happen due to his age & changing hormones. I wish your daughter & your family best of luck on getting back on track.

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Hi Brenda,

Oh no, both of our girls are going through flare ups at the same time! I saw your post and had to say hi and i"m so sorry for you and Liz.. I also don't know how much I can take anymore...I almost called you today again. I cried the other night at work when someone asked me how Lauren is. I'm having so much abdominal pain myself, I try not to get too stressed about all of this.Good news is there is a chance I'll have a CT scan or gallbladder removed.

Back to the girls, enough about me: I hate this disorder, I hate what it does to our kids. Natalie can barely function some days now too.

Why do the symptoms have to get so scary sometimes??!! Why can't they feel good enough to keep up in school???!!

Lauren is going to have an MRI of her brain in thenext week or 2. She had one 3 years ago, but has new symptoms, so is going to have it again, since she can barely see enough to read right now. Verbally, and mechanically having issues too.

I will tell Lauren to contact Liz.

I'm thinking of you guys all the time! :rolleyes:

Dawn

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Thanks Katie for the kind words for moms & to everyone else. I really appreciate the prayers! Last night and tonight, I took long walks as I told my husband that I have all this pent-up anger and I feel like punching walls! I'm really not a violent person but it just seems too much to bear. I'm really trying not to have a pity party for myself and my daughter but I just know that all of you on this forum are going through so many of the same things.

@Ramankentesh, I don't pretend to know exactly what my daughter and others with POTS go through but I do have debilitating migraines as well as other health issues myself so I do understand some of it.

@Christy, what does your son take for restless legs? Just curious since I have that.

Brenda

Ohh Brenda, I just wanna give you a big fat hug! You poor dear, your daughter is so lucky to have such a caring mother. I am sure you are her lifeline. My mother says to me all the time when hugging me, "If mama could take it all away or give it to myself instead, I would." It just shows how much she cares and how she doesn't like to see her 22-year old baby suffering one bit. This is the perfect place to vent, and I say do it every single time that you need to. Writing out your frustrations really does help. I keep a journal and write down anything and everything I am feeling and it helps SO much. I don't know why, but it is so effective to my mental health. Your daughter may have this tough illness, but always remember to keep your health in check too. If your anger gets too bad and talking it out with your husband or keeping a journal doesn't help, don't be afraid or embarrassed to talk to a professional; that is what they are for. You struggle as well and it is important to make sure you are okay too. Also, I seen you asked about Restless Leg syndrome. I was diagnosed with this as well on top of chronic headaches with migraines and tremors. My neuro put me on a medicine called Gabapentin and he said it helps with ALL of those things. So far, all have been less present besides the tremors. It took a few weeks for it to be effective, but so far it has decreased my amount of headaches and the restlessness in my legs. So that is another option to consider as well. Never feel bad or uneasy about having a pity party here, as we are all here for you! =) I will say a prayer tonight for you and your daughter and I send my best wishes and blessings your way. BIG HUGS to you both. =)

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