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littleangel77007

Hi Thought I'd Introduce Myself

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I'm new on the forum, so I thought I'd introduce myself. I'm 32, and was just diagnosed with POTS in March. I think I've had it for at least 2-3 years, maybe longer, but I've always had funky health things, so I didn't think much about all the symptoms until I started having heart arrhythmias in February and went to the doctor about it. In all my reading and research, I consider myself very lucky that I got diagnosed so quickly. As I'm sure most of you can relate to, it was nice to have an answer and feel validated, and to find out I'm not crazy or just lazy after all. It's also nice to have a doctor who knows what POTS is, even though I'm not sure she's the best expert on treating it. Right now, she has me on Cymbalta and Toprol XL, as well as a high fluid/high sodium diet and other lifestyle modifications. These have all helped some, but I'm wondering if other treatments, either in combination with or in place of my current treatments, would help more.

A little more about me...I'm a critical care RN and work 3 12-hour night shifts a week. I have to work full time, because I have massive student loan debts to pay, and I have to have health insurance (obviously). I've been trying for close to a year to find a new job, since this one is virtually killing me, but nursing jobs outside the hospital are a bit scarce in my area right now. I'm an only child and still live at home with my mom, and we get along well, which is a blessing. She doesn't quite understand the whole "lack of spoons" thing, but she's trying. I also have a bunch of pets which keep me company when I don't feel well, though their upkeep is hard, but my mom helps. We have 1 dog, 4 cats, 1 snake, and 6 tarantulas. I've lost touch with most of my friends because of POTS, since I don't have the energy to do a lot, and they're all busy with their weddings and kids and new houses and such. We just really have nothing in common anymore. And last year, I lost my boyfriend of 13 years because he couldn't deal with me being so exhausted and sick all the time. I pretty much just work and sleep, and have no energy for anything else. Again I'm sure many of you can relate.

So that's me in a nutshell. I'm trying really hard to figure out how to cope with this and still have some sort of life. I'm still in a stage of grieving for the life I had envisioned but will never have, and trying to come up with a new plan and a new direction for myself. And I'm constantly trying to learn new things about POTS. I look forward to learning from you all, and giving my support to you whenever I can.

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Welcome! Sorry you have a reason to be here but glad you found us.

I know my POTS doc told me that working three 10 hour days a week was really bad for me. I'd work my three days and then be totally worthless for the next 4 and then started not even being able to get back to work for my next round. He said it would be better to work everyday for shorter hours as he thinks being on a more consistent schedule- as far as energy demands- is a really important life style change for dealing with POTS.

Being in the hospital- especially critical care- is so labor intensive I'm amazed you can do it. Although if you're like a lot of us who feel terrible in the morning and better at night maybe working the night shift works to your benefit? Hope you can find something that works better for you. Have you considered home health care or something that might give you more flexibility?

Glad to have you join our conversations!

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Hi Littleangel, welcome to the forum! Hope you'll find the answers you need, there are a lot of friendly, helpful and knowledgeable people around here so you have found the right place to find comfort!

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Welcome!! I, too, am a retired Peds RN...so sorry you have this, especially being so young. You'll feel right at home with all of us here. It is a true blessing that you live with your mom to help you out. I'm always researching and trying to find answers. :) It's in our nature being medical professionals. I've learned so much just being on this site!! It's been wonderful. Many intelligent and caring people here; anytime you need a helping hand, I'm here for you :D Joy, Kim

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Welcome littleangel!

I too am a nurse of 30yrs+ and still working in hospice and home health. These may be areas you want to look into. I like you work full time and find all I do is work and sleep. In-between, I try to do little things around the house. I am married with 2 teenage twin daughters along with 3 cats. I do have a special female friend who helps get me out of the house and helps me when I am at my weakest. Just for instance, tomorrow we are doing a Walmart run to replenish household items. She drives me and helps me with shopping making sure I don't get too weak and pass out. It may only be an hour or two at Walmart, but I am out of the house enjoying time out with a friend. Do you have any one person in your life that can help you?

I know how difficult it can be losing a boyfriend. I was diagnosed in 2010 and only this past year did my husband finally begin to understand what I have been going through being symptomatic, passing out, etc...I have been married almost 30yrs and this disease has tested my marriage and continues to test it. Even my children don't always understand what is going on with me. I have to constantly remind them of all the limitations I have and can't do the things I used to do. They all want the normal mother and wife back, which we all know is not going to happen at this time. I do believe in miracles but at the same time am a realist too. All I can say is to try to take each day as it comes and make the best of it. Put yourself 1st and know your limitations. Sending you hugs :) .

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Hi, Littleangel. Welcome to the group. Glad you found us, sorry you had to, though. :)

Wow, six tarantulas. Sorry, stopped me for a moment. :)

As far as meds and treatments go, I think we all have been evolving in that department because it can take quite awhile to find what works for you. Hang in there.

One thing I think you'll find, as you read more here, is that finding a doctor who believes you is the first blessing, then to find one who will work with you to help you with this condition is another one. Many of us here have docs who may not know a lot about POTS, but who believe we are ill and who are willing to learn with us to try to help us. Sometimes, that's better than what we get with the "experts" on the subject. I hope your doctor continues to be an asset to you and your health and you two can come up with a treatment plan that gives you a great amount of relief.

My daughter is a critical care nurse at a busy Columbus, Ohio hospital. I cannot imagine doing what you do and having to deal with POTS at the same time. I couldn't do it. I have all the respect in the world for you for even trying. I'm sorry it's such a struggle for you. Bless your heart for continuing to work at it.

I'm sorry your friends aren't as close. I know that feeling. My family and friends have left me behind because I can't go out to eat, or shop, etc. anymore. They don't seem to realize that I can sit and play Scrabble or watch a movie with them. I'm sorry about your boyfriend, as well. We've all been talking here about our spouses and our relationships with them. It's hard when you have a chronic condition. Please hang in there. It's hard, but we're all here to talk with.

I went through the grieving my old life, as well, I think for six years. I just kept saying, "I want to get back to my old life." And, that's what I worked for. It took a very long time to realize there was no old life to go back to, and moving forward with the changes was what I had to do. Again, it's hard, but it can be done. I'm sorry for your grieving. I know how painful this all is. All I can do is give you a virtual hug and let you know we're all here to help you as much as we can.

Take care, and again, welcome.

Lindajoy

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Hi Littleangel,

Welcome to the group, wish it was under different circumstances. So sorry to hear of all of that you are going through. It's not an easy road. I think we can all relate to the friends disappearing one by one with these issues. It is a hurtful thing to go through. Also, sorry about your boyfriend. That is terrible to hear. I am sending you a cyber hug and lots of healing prayers.

Maiysa

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Hi!

I'm new also. I'm a kid and share this account with my mom. Having dysautonomia isn't great:(. It's kinda frustrating that no other people know about it. At least there's other people who have it.

Kayla

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P.S Hang in there! Its hard having this illness. But a lot of people get better, and i bet you will! You'll get through it soon, I promise! Be strong!

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