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hi all...

boy this is one of those emotional roller coster weeks for me..

I still have not had anyluck finding a doctor to treat my pots...and am hoping that i find one soon.

well too top off, my allready crappy week, my boyfriend, feels the need to tell me that

"I am imagining being sick... that I am not really sick... that it is not humanly possibly for a person to feel sick all the time..."

Then my grandmother tells me, that i dont really need a scooter to help me, that I am just being lazy and dont want to walk...

I tell you when i heard all this I just cried..I know that what I am feeling and am going through is real... and is so debilitating... I have no support or any body to help me...

my boyfriend said there is no reason why I shouldnt be able to do all the cooking and cleaning.. because all i do is sit at home all day.. and after all according to him there is nothing wrong with me..

I am so upset, the people that are suppose to be there for me, are not, they would rather ridicule me and make me feel guilty about not being able to meet there needs. so selfish.

AAAAARRRRRRRRRRGGGGGGGGGGGGGG!!!!!!!!!!!!

anyways folks, thanks for listening to me vent... this week i just feel like screaming and pullling my hair out! I am so sick of jack*** narrowminded people...

dizzygirl :angry:

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Dizzygirl,

Not feeling well enough right now to write all that's on my mind, (was sent to the ER again today for breathing issues, and I'm knocked out.) But I didn't want this to go unanswered. It is such a horrible feeling for the people who are supposed to be our anchor not validate or support us, or worse, put us down. It probably feels worse to you right now than the disease itself. It's a kind of betrayal. It is so hard.

It is important for your boyfriend to know how his attitude is affecting you, this can't be good for your relationship. You guys need to talk, at a time you feel well enough to discuss it in a less emotional kind of way. Otherwise, you are going to continue feeling taken advantage of, and that's a horrible space to occupy.

Sending a cyberhug.

Ariella

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ariella,

hi i am sorry you have having breathing trouble, if i recall correctly.. you have restrictvie lung disease?? I tooo have that. and know how rough it can be.

as far as talking goes with my boyfriend, I have tried to talk to him many times before, because this sint the first time he has been a jerk when it comes to me having pots.. he doesnt want to hear any of it.. and wont listen to reason.. i will try one more time though to talk to him... hopefully he will listen...

I'm sending a cyber hug to you too..

I hope that you feel better

dizzygirl

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It's the worst feeling in the world, Dizz. I'm sorry you're going through it. Boethius' consolation of philosophy is quite comforting on this one-

He says that true adversity gives us GIFT- the gift of knowing who our TRUE supporters are, and sifting out the crappy ones.

Well, you know your boyfriend is a crappy one! :angry:

But WE are not crappy ones! We care! We empathise.

In a way, you discover TRUE friends because of the bad ones- and I see how that works here because if I'd never gotten POTS, I'd have never found you guys!

Just focus on the people who CAN support you. I know that when things get really bad and my parents are doing my head in because they just don't understand my predicament, muchas I love them, tha tI can come HERE and find people who ist, listen, don't judge, simply offer support and most of all EMPATHISE.

You did the right thing in coming here to tell us, dizz....vent all you need.

Sorry if this seems jumbles- my mind is considerably muddled today! :o

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Dear Dizzy Girl

I have a lot of sympathy for you. I went through much the same thing in the first few years I was sick with POTS. I had friends and even some family scoff at my being ill and thinking I was either lazy or crazy. That was in my early 30s. Now I am in my late 50s. I still have POTS. However I do not have any friends or family who scoff at me. They are supportive. This is because they either changed or I got rid of them from my life.

First I made up my mind that it is okay for me to be the way I am. I am a person with POTS. This does not make me less of a person. I have POTS like another person might have diabetes.

Then I learned to talk about my POTS in matter-of-fact terms. I say "I have dysautonomia." in the same flat tone of voice as I would say, "I have a broken leg." Then, if the other person asks what disautonomia is I say, "It is a dysfunction of the autonomic nervous system that affects my heart, breathing, blood pressure, and digestion. It causes dizziness when I stand and it causes extreme fatigue. I cannot sustain normal levels of activity and am handicapped, even though I don't look sick. It is not life-threatening, nor is it curable. I will most likely always be this way."

Then I stand my ground if anyone tries the lazy or crazy thing. I still use a flat tone of voice and present myself as quite calm. I do not argue. I had one friend who always used to say something like, "I'm tired, too. But I just keep going." I would reply, "Of course. You don't have dysautonomia. If you had dysautonomia you would have no choice but to sit down."

Finally, those who did not accept my stance, I dropped from my acquaintaince. This is easier to do with friends than with family. With a close family member, like a mom or dad, who will not accept you as you are, you may have to distance yourself from them and maintain a distant, polite relationship.

This next part is going to be easy for me to say, hard to do: If the boyfriend doesn' t get with the program, lose him.

Then again, I am a person who won't compromise when it comes to my right to be who I am. I would most likely end up alone rather than stay with an unsupportive significant other. We are all different in our needs. I need to be real and that means being me. Than I can deal with the rest of the world.

I was worried at first that I would have no friends. And for awhile, I had only one. However I learned to look for potential friends where ever I went and they were there. Now I have a strong support group of friends. These are substantial, valuable, strong people who love me for who I am (POTS and all) rather than love me in spite of having a chronic illness.

Nuff said

hugs from

Michigan Jan

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Dizzygirl,

I'm so sorry that you are going through all that... My heart is heavy just hearing it. I've been really blessed. I couldn't image having people push me like that in the condition I'm in. I would be in the hospital in no time.

I don't have words of wisdom or anything really special to say... I just want you to know that my heart really goes out to you and I'm really sorry you have to deal with such a heavy load by yourself. I'm hoping that someone with be brought around to help you out and carry it with you. I couldn't image doing it alone.

(deeplyset, I've edited your post to remove the long quote)

Edited by MightyMouse
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Family is a tough thing--and I know how you feel. My father thinks I'm faking everything too, and there is nothing I can (or will) do to change his opinion.

As for friends, you get to CHOOSE who you associate with (unlike family). I no longer associate with friends who were unsupportive...well... maybe unsupportive is the wrong word... hmmm... I think it's more that they didn't believe me and/or didn't respect my limitations. For example, I had a former friend who got upset with me because I left an outdoor party early b/c I needed airconditioning...or another friend who didn't understand why I didn't want to go to a baseball game this Summer.

I used to get really upset and really defensive. Now I just say what I need to say, such as "I get very sick in the heat." and if they don't understand, too bad. My real friends DO understand--they even look out for me.

Don't let ANYONE knock you down... take a deep breath. You can firmly stand up for yourself, and if you have to, walk away to protect yourself from being blamed for your illness (or, stay and duke it out verbally--calm and firm).

Eerie, PA is just an hour and a half from Cleveland, where you can go to either Dr. Fentat Fouad or Dr. Chelmisky. And just under an hour further is Dr. Grubb's office in Toledo. If you have to get on a waiting list for an appointment, JUST DO IT. Adequate treatment can make a huge difference in your daily living.

Nina

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hello all...

thank you all for your support.. it means so much... where is Dr. Chelmisky? Is he /she at the clevelnad clinic too? I saw Dr. fouad approx. 2 1./2 yrs ago.. i dont think that i would have a problem getting in there...adn for Dr. Grubb.. I was going to give his office till friday to call me back with an appointment... then i was going to call them back...I have left messages with the nursing staff.. but nobdy has called me back...I know thay are terribly overloaded...

But I really appreciate the support, I know I can always count on my pots family to understand the daily struggle with dysautonomia and all tha goes allong with it...

thanks again..

dizzygirl :angry:

Here is a cyber HUG for you all!

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Hi,

I used to try to convince people that I was sick but now I realise that it takes too much of the little energy I have.

If I have to be around that kind of people I just ignore their comments and if I have the choice I don't get close to them.

Ernie

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I'm sorry to hear that your feeling bad because people aren't being sympathetic. I have found who really cares and trusts me through this whole process and I'm only left with a special few.

Not to take sides with the unsympathetic but I bet it's hard for them to understand illness if they haven't experienced it themselves. If I haven't gone through this experience and many others maybe I wouldn't be as supportative to people's hardships, who knows, maybe I would.

Anyways ignorance is no excuse for not believing you. I told my mom that when I'm real bad it feels like having the flu 24/7 everyday. She felt bad and supported me but didn't REALLY understand until her and her husband got real sick for 3/4 days. They said the whole time they were asking eachother how I could feel like this the majority of the time and still be able to raise my 3 wonderful kids. Now everytime I feel really sick they feel bad because they know how I'm feeling.

Have you printed up articles on this illness and shared it with your loved ones? I still can't explain this illness very good and was sick of trying so I printed out the info for everyone and know they have a better picture of what I'm dealing with. I wish they had cards so I could just pull one out of my purse and give to everyone who says, What's wrong with you again?

Well I wish you the best. If all else fails, we believe and experience and sympathize with you every step of the way.

Dayna

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Dizzygirl,

My heart goes out to you. I have, many times, felt discouraged about my health, especially when I don't feel supported by those around me. In my family, my mom seems to be the only one who really understands or advocates for me when it comes to my POTS. My one brother and dad seem to think that if I was just tougher I could get over it. I've realized that no matter what I say, I can't really convince them. I just have to try and ignore their rude comments and unwillingness to try and understand what's going on.

As far as your boyfriend, I hope that he comes to see that what you have is actually a serious medical condition... and I hope that he will become more understanding.

Know that you can always come here for support. We're all here for you when you need us.

Best wishes to you--

Meghan :)

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dizzy-

i'm wanting to write you more but am wiped right now & simply can't. i'll post more later but in the meantime want to at least send a ((((((HUG))))))) your way.

hang in there,

:-)melissa

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Diz, here's the entire ohio listing.

Dr. Blair Grubb

Medical College of Ohio

3000 Arlington Avenue

Toledo, Ohio 43614

419-383-3925

Ohio State University Medical Center

Autonomic Reflex Laboratory

Neurology Outpatient Clinic- EMG Laboratories, 1C

456 West Tenth Ave

Ohio State University Medical Center

Columbus, Ohio 43210

(614) 293-6767

Autonomic Laboratory

Dr. Thomas Chelimsky

University Hospitals of Cleveland

11100 Euclid Ave.

Cleveland, OH 44106

216-844-3495

Autonomic Laboratory

Dr. Barry DeRan

5705 Monclova Rd.

Suite 204

Maumee, OH 43537

419-897-7611

POTS, NCS

Dr. Fetnat Fouad-Tarazi

Head Syncope Clinic, Dept. of Cardiovascular Medicine (F15)

Cleveland Clinic

9500 Euclid Avenue, Cleveland, OH 44195

216-444-5828

POTS, NCS, PAF/Secondary Autonomic Failure, MSA, Other Autonomic Disorders

Autonomic Laboratory

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I just LOVE the way we all help eachother here at PPforum!!!

I'm very sorry Dizzy to hear that it's your turn to not be believed (I'm sorry, have a little trouble thinking but wanted to write to help you feel better!!!). I think we all have had trouble with this. I agree with everybody else that people who don't believe you're really sick, don't deserve your friendship. As far as your gramdmother. Explain her once and tell her how much it hurts you what she told you. If she still doesn't believe you you could ask her to have a look at this site and we all will convince her!!!

These are the things that make life so difficult on us. Not just being sick (although that is bad enough) but having to deal with ignorant people.

I'm sending you warm wishes Dizzy and hope things will work out well for you!!!

Corina

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Dizzy, sorry you are going through this. Been there, done that, am there again. My first husband would never had tolerated my illness, which is one of the reasons he's a previous spouse. I have had more doctors than even I can believe, every psych diagnoses you can get and have a whole lot less friends than I used to.

They think of me as useless, I think of them as dead weight. As for family, my sister is the only one who tries to understand, but she only barely gets it. I do have a very supportive hubsand and son, and one son that thinks along the terms of his dad. (the ex) We just do not discuss my health.

It's very hard to think of the realities, but if your boyfriend is like this now, how supportive would he be if you were married? I think everyone on this site has lost someone they really didn't want to because of or in spite of our illness. It's very hard to think there are so many people with so little compassion, but there it is, this is a self centered society we live in. Compassion has to be taught anymore and for some people the only way is to walk in someone else's shoes for awhile.

Unfortunately, or fortunately for them, most people who don't believe we are sick will never understand. But the good ones will try their best, will love in spite of infirmities, seen or unseen, and will stick by you through thick and thin. Those are the friends and family you hang on to. There will come a day when all the uncaring people in this world, if they live long enough, will become infirm also and that's when they will realize what they were really like and have many regrets. And then it will be too late for them.

I guess I look at this sometimes as a learning tool for myself. How do I want to be treated and then that's how I treat others, then no regrets when I die.

So get rid of dead weight, it's not like you need even more resting on those already weary shoulders. You will meet people who do care and will love you for you, not for what you can and can't do, be it family or lover, or friends. Hang in there and even tho cyber friends can't touch you, we can at least support you through this very rough time! morgan

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hello all...

i am in better spirits today.. I have made some decisions.. I put my name on the waiting list for an apartment complex downtown.. that is set up for disbaled persons and the elderly... there are people ther who are my age who are disbabled for whatever reason..

I think that this is a wonderful oppertunity for me...and will be best for me. I will be living totally alone again... and it will be very hard.. but I think it is best that i do...

I need to be somewhere were I can get support not..criticism..and get healthy physcially as well as emotional health..

there is a waiting list for the apartment building.. there should hopefully be an opening by the first of the year..

so things are looking up today.. I thank you all so much for your words of encouragement and support.. I wish i could reach out and hug you all!

thanks!

Linda

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Good for you Linda!

Youve got guts girl!! I think this may be an amazing opportunity for you. Meet new people with a different perspective with life with a disability. You seem like the type of person that would be an asset to a community like that. Your future new neighbors are fortunate.

I hope it all works out. Im sick of people thinking its not real too. Luckily (lol) I have these episodes every now and then were I get pale and my hands and feet turn blue and i sweat and vomit. It has happened in front of doctors, my husband, and my mother. I put their hand to my heart when my heart rate is 176. I did that to my husbnd one time and said"you do the dishes". He his much more understanding now.

Im glad your spirits are better now :)

Janine

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Sorry you are having to go through this. I think the appartment you are describing might work quite well.

Michiganjan...I really liked your response in how you deal with people who don't believe POTS is a medical impairment. If Jan wouldn't mind and if Michelle would be agreeable, Jan's reply might be edited to make a nice contribution for DINET news. Just a thought!

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(((hugs)) to you Sunfish. I hope you find a knowledgable and compassionate Dr. soon, and make sure you drag that boyfriend of yours along so he can hear all about pots and it's potentially debilitating symptoms. I thank goodness that my hubby is very understanding and compassionate even though he does not have dysautonomia. My symptoms jump around so much and at times keep me from doing things, but he never pushes me, he is always there, the first one to say o.k., you stay home and rest. I love my family but I can tell they think much of this is me over-reacting, so I wind up not talking about it with them. I just say I am under the weather. It takes to much energy trying to explain and you just convince some people otherwise.

Hang in there! :)

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Michelle,you sure are quick...I was just writing to goldicedance to suggest she send you an email :)

Dizzy, GREAT for you!!!! Like I said, don't give anyone the power to take away your belief in YOURSELF. Big hive five to you.

Nina

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:) Sorry that not everyone can experience what we go through daily at least half a day one time. My spouse was not so sure anything was wrong with me either until one day he was at home and had to hold me up while I was shaking and fell out. It is very unfortunate it took something like this to make him a believer. Now he stands by my side in support of everything for me. When i feel bad he is the first to make sure i either get medical attention or maybe just some rest if it's not too bad. I hope that things will get better for you on terms of at least your family not being understanding!!!!!!!!!!!! Maybe you could just write your boyfriend a little letter and drop a few memo's on all of your problems printed by some of the forums on the net. No one should really ever have to go through this: however, life is not always so simple.

I wish you the best and if you think a personnal letter from someone who experience what you deal with would help. My e-mail is yewtah2@tds.net Rita s

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My heart goes out to you. I can totally relate! I am proud of you. It sounds like you are being proactive and heading in the right direction. The appartment sounds great.

MichiganJan: Thanks so much for your reply. It gave me hope that my future social life and support system will improve.

Dawn A

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