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Finding A Lifestyle That Works


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Have you found a lifestyle that works for you?

Are you testing things out to see what works for you? How are you doing that?

(I’m sorry if this is a little jumbled or repetitive, putting thoughts to words is very difficult for me.)

I’ve been very confused on how to go forward lately and I was hoping some of you might be able to share your knowledge or experiences with me or maybe give me some advice.

To start off, a little about me: I’ve spent most of my life in a very small town mostly cut off from the rest of the world. About half a year ago I moved north of Houston. It’s like a small city just outside of the big one or something.

I became ill when I was 13 and became bed ridden when I was 15. While I was still 15 I flew across many states to go to the Mayo Clinic where I got a diagnosis. I have not been to a doctor since, so I do not take any medication. (I only drink gatorade to increase my sodium levels.) I am currently 17 and have been improving a little bit. I’m now able to go outside for a few hours at the most two or three times a week. School and work are impossible for me.

A big problem I have is that when I was healthy I was never taught how to live independently and what that entails. And now my illness has given me a learning disability of sorts. (I have a constant headache that gets worse every time I try to think. Understanding things, conveying things, sometimes even registering my surroundings is difficult. The worse my headache gets the more difficult it becomes until the pain completely consumes me and I can’t do anything else that day but mindlessly watch videos or something.) I’m just barely starting to understand the world and the society in the usa. And I’ve realized that things are very difficult. A difficulty that I can’t find my way in. I’m completely dependent on my mother and I don’t know how to change that. I want to find a lifestyle that works for me instead of just sitting here in my room spending my time on the internet. I’ve been doing that for years and nothing else. I’m quite tired of it and want to change what is in my ability to.

Though I don’t know what type of lifestyle is available to me or how to achieve it, I’ve been trying to think of ways to at least do something.

I don’t fully understand, but my mom said when I’m 18 at the end of October she will try to put me on long term disability through social security. (If I do get it, it will only pay $600 a month.) And I am planning on trying to get my motorcycle license. I know it will be very hard for me to learn the manual and laws and what not and I’m not even sure I can physically ride a motorcycle or motor scooter, but I hope it’ll give me a form of transportation if I can. (My mother works long hours and can’t take me out much and there is only one bus in this small city which doesn’t even come close to my apartment. There also isn’t very many sidewalks.) I’ve been trying to find hobbies and things I like that I can do, but it’s not enough to form a lifestyle around. Nor do I like creating things, so making crafts and/or selling them isn’t really for me. I really don’t know where to go from here.

If you could give me any advice or share your experiences, that would really help. Thank you.

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I think you expressed yourself very well Edin :)

We are all trying to find a lifestyle that works, at least I am. It's a matter of trying things and when one does work moving on to the next as well as doing my best to stay positive and believe there are better days ahead.

Im thinking I saw somewhere someone mentioned a dr in Houston? If not, i know there are some good dr's in Dallas. Dr Amer Suleman is great as well as Dr Eric Eichorn. Getting into a good dr is probably your best bet in finding a lifestyle that works,.

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I agree with i hate bananas, I think you expressed yourself very well, Edin.

I am curious to see how people respond, as my daughter is in a very similar position to you, although she is on quite a number of meds. She has not attended school since she was 15. She was able to get her GED and hopes some day to attend college. Although the meds help her on a day to day basis, they have done nothing to help improve her condition. Exercise, which she has begun doing more of recently, is seeming to be helpful. But she still vomits rather frequently, and a trip outside the house for a few hours will lay her up the next day. But we are seeing an improvement. I do understand your wondering what kind of lifestyle you will be able to lead in the future, as we have been wondering the same for my daughter.

One of my concerns for you is your constant headache. Once my daughter started on adderall (see had no need for this prior to getting POTS), it really helped her think, speak and read. She was an avid reader and hadn't read in a couple of years before the adderall, because it gave her such a headache as well as visual disturbances. I don't know if this might be simlar to what you are experiencing or if your headaches could come from something else. But if you are able to go, I think I would try to find a doctor to speak with about your headaches and about your health in general. Even if you are not looking for meds, I think a good doctor could be of some help.

My best wishes to you, Edin,

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Yes, I would see a dr if you can. There have been a lot of medical improvements in POTS the past couple of yrs. you can also see a headache specialist. it is a positive sign that you have improved some. If you got this young there is a chance you will improve totally.

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Edin, good for you for reaching out about this. I've had a recent relapse which has made me feel so alone and I can relate to what you are going through. Here are a few ideas that come to mind:

1. Exercise - I know this is different for everyone but make sure you are doing something regularly to reverse deconditioning. I spent so many months in bed and then heard about dr. Ben Levine's exercise study for POTS pts out of Dallas. In March I forced myself to go to cardiac rehab with all the older folks. At first I couldn't drive myself and I had to rely on my mom and others for rides. Most days I'd have to wear sunglasses and earplugs and it was a pitiful start. But now I'm able to drive myself most days and I bring the sunglasses w me and only wear them occasionally. I was discharged from cardiac rehab and I now work out with a trainer. I'm still doing almost all recumbent but the exercise has been a huge help in my progress. Note- many days I still come home and have to recover from the exercise but I am spending less total time in bed playing video games and watching Netflix.

2. Create a routine for yourself that involves learning and renewing your mind. Watch educational videos such as those on Khan Academy or healthy cooking/ cleaning videos so you can learn new ways to do things for yourself. I'm 42 and last fall while in bed a took a Biology course online and downloaded the latest edition of the Primer on Autonomic Nervous System on my computer. I'm still trying to understand what I'm reading but the challenge helps me keep my mind working. Of course I only have the capacity to do that on good days- but on bad days I have a rule for myself that I watch one educational video before watching a movie or TV show. Also, I've started the one year bible reading plan - don't know what your faith is but find something that lifts you spiritually too.

3. Make a list of the things that you can do for yourself- such as bathe, get up to make a bowl of cereal etc. And then make a list of five things you'd like to add to that list to become more independent by the end of the year. Then work on your list. I've found just having a goal, even if I don't reach it helps me to at least move forward.

God bless you.

3.

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May I ask how much going to the doctors cost for you all?

I'm not sure I can afford it. My mom just got off of unemployment and her current job has no benefits. I'm not sure if I'm insured or not, but I do know that my mom is still paying off doctor bills. Maybe the money from long term disability will be able to pay for it? But I'm not sure how I'll be able to get to the doctor in the first place with my mom so busy and with us new to the state, we don't have any friends or family that can drive me. Maybe if I'm able to get my motorcycle license and a bike I might be able to make it. But either way I need to wait until I'm 18.

And thanks for the other tips, I'll try to make a routine; routines have always been one of the hardest things for me.

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Hi edin, so glad you are reaching out to us. There may be a good chance that you and your mom might qualify for state/federal assisted health insurance and you may not have to wait until you are 18 to get on medicaid. I too know what it is like to not be able to afford health insurance or doctors visits. So I do understand your situation. There are lots of free community services available to you. We have something here called dial a ride.

Anyone here from texas know how state/federal medical insurance works in your state, or who she can contact for assistance on this issue? If you could help her out on this that would be great.

Edin you might want to make a new post asking your fellow texans where you can get help with insurance and transportation. We have something here called community information and referral.

I do hope you get to have your dream of riding a motor cycle, but I think you will need to get better control of your medical issues before you will be able to do that. You seem very bright in spite of the isolation you've experienced and with the internet assistance I think you will be able to get what you need.

Take care!

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I was able to talk to my mom a little bit today. She said we are uninsured and she makes too much for medicaid. She said I might be able to apply for it when I'm 18. And I outright asked if we can afford going to the doctors and she said no, though it was fine to start researching more now. But overall, it still comes down to waiting.

It's a little hard. I've spent so long 'running away' from my illness because of money problems, but now I'm trying to face the problems and find a way around it and it all comes down to me not being old enough.

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Edin, you are on the right track and planning for you will be important. Money, transportation, etc. Are just some of the obstacles- the key is doing the research and then figuring out the how. Sounds like your mom is supportive of you researching so I'd encourage you to look into both funding with local, state and federal sources. (u can usually find this info in the front section of the phone book.) as well as the right docs/ tests for you and keep her informed (maybe even put in writing) about what you learn/find. That way she can have time to review the info and plan too.

As a mom myself, if I know my son/daughter has invested time and effort researching something then I'm much more likely to support it.

As for funding sources, I'd go down the list of agencies in the phone book one by one- any that seem relevant, such as health, travel related. Call them, explain your situation and ask if they have any services that might help you.

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Hi Edin. I think you're doing a very good thing in thinking about you life and what to do. It looks like you've already received some very good advice. My daughter is 17 and was diagnosed last summer. She would NOT be able to do school or even her art if she wasn't on some medication. Midodrine helped her have fewer episodes of POTS and hypotension. But school had become very, very hard for her. Effexor has brought her focus and concentration back. She had done very little art over that last year or so and she can't stop now! She can still crash (Monday was a hard day) but she's like you.... trying to figure out what to do on the up days and down days and what her future holds. I encourage her not to look too far down the road but to focus on today and to work on some short term goals. A little bit at a time. If you're interested, she has a blog. Its focus is on Ehlers-Danlos and POTS. (www.somethingholdingmetogether.blogspot.com)

Thinking of you as you tackle this.

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