I give up

[danelle]

Hi all, just got back from another visit with my cardiologist and of course, left crying . Why do I keep doing this to myself? Anyone know? I went to discuss my visit with Dr Grubb. I have had this cardiologist for 17 yrs now and I though he was a pretty caring Dr but today something was different. Can't quite put my finger on it He basically asked how I was and I told him virtually getting to the point of nonfunctional. I expressed my usual concerns an how things have deteriorated for me greatly over the past year or so. My sister even went with me and expressed her concerns as well. We didn't get much of a response at all

He looked over Grubb's dictation and recommendations and asked me if I had a GP and I told him that I was inbetween two right now(I will see my new one next month). He told me that I was his first and only POTS pt and that I needed to be following up with a GP rather than with him. He gave me a new RX for Wellbutrin and that was that.

Folks, I am ready to call it quits on the Dr's and just fall apart. I am truly close to being nonfunctional to the point of losing my job. I am still able to do little things around the house but with many many breaks(such as writing this message).

I am close to losing my house, cars, etc. but more importantly my husband. We have been married for 20 yrs on Thursday(high school sweethearts). The stress of my illness, finances,etc is just too much. He has been kind and patient for the most part but that is nearing an end, I see it daily

Not quite sure what to do, just needed to let it out. I am now in a major depression over this **** thing and am about to lose EVERYTHING I have and it seems like noone cares(especially the dr's) and the certainly don't understand....

Isn't that the story of our lives?!

Til later,

Danelle

[purplefocus]

Danelle,

I am so sorry you are having to go thru this. Don't give up on the doctors, I know it is frustrating but look around for another if the two that you have don't work out. You will find one, it just might take a little time. Has your husband looked at this site any. I often get my husband to come on here and read stuff, I think it opens his eyes a little. Just try to hang in there, scream , vent , hit your pillows, go for a walk, whatever helps. Keep coming in here, we will help you as much as we can. Know that you are not alone in this.

Paige

[Sue]

Danelle

Before you do anything you need to sit down with hubby and have a heart to heart with him. I too thought my husband was at his wits end with me being sick. I finally told him we needed to talk. Here I am think he was at his wits end and ready to leave when in reality he was so scared for me he just didn't know what to do. My husband really believes I am dying a slow death. He has told this to my primary physician as well as to Dr. Grubb. They reassure him that I am not but he is truly afraid. I really had to sit down and reverse the situation. I know if I saw anyone going through this I would truly be afraid for them. My family walks on egg shells around me. They know the littlest thing can set me right off. But we have all sat down recently and I tried to explain to them the best I could how I feel when I am sick and what I needed from them. and of course I listened to them so they could tell me how they feel, especially my two teenagers.

As far as your job can you take some personal time off. It sounds to me like you really need some r and r. Stress only makes our situation worse, I am sure you know that by now. I haven't been to work since January and am still not ready to go back.

I hope things get better for you soon.

Don't give up, keep searching.

Sue

[MightyMouse]

I hope you don't give on docs permanently... I've been to that point where I wanted to do so, and I did stop going to the doctor altogether for a period of about 5 years. Eventually, a friend of mine took me to her doctor...and I've since found some good docs to help me.

Glad that you felt you could vent here. I sure do feel for you. I have several docs bail out on me in the past few years, mostly because I was too complicated. I would strongly suggest looking at the DINET doctor listings, as well as on NDRF and on the CFIDS sites. If you need links, let me know and I'll post them. It's not a promise of a great doctor, but at a bare minimum, it should be someone who knows what POTS is.

Nina

[calypso]

Danelle,

Please, whatever you do, DON'T GIVE UP. You may not have total control over your body, but you do have some ... you have your mind. And it is a very powerful thing. You have the ability to find another doctor, one who will listen and advocate for you. There are tons out there, you just need to find the right match.

I know how it feels to have your relationship suffer. My husband's patience is wearing thin, I am sure. Maybe you can try to gather all of your energy and get out for an evening sometime soon. You don't have to go dancing, but maybe a movie or a picnic (cheaper and more romantic).

Please try to think of as many good things in your life as you can. I know it may be hard but I am sure there are some. Keep doing whatever it is that makes you feel good, whether it's eating ice cream or watching a funny movie.

Amy

[michiganjan]

Danelle,

I am glad you posted your frustrations. There have been a couple of times that I have sworn off of doctors. However I always go back because I need help. I have a couple of suggestions.

When you have your first appointment with your new PC explain your medical problems and tell the doctor what kind of physician you need. For example, "I need my doctor to read the research I bring in from time to time. I need a doctor who listens to my ideas about meds. One who is willing to learn with me and help me experiment in order to be the best functioning I can be. One who will confer with other docs of my choosing. One who will think with me and order tests to learn more about the source of my particular symptoms. His or her reaction to your statements should tell you whether or not you belong with that Doc.

Have you talked to your husband about his feelings about being married to someone who is chronically ill? I am assuming you have already been over everything together so not sure this will help.

I have a counselor who is a nurse who specializes in helping people with chronic illness. She has fibrymyalgia herself. I do not go to her on a regular basis, but whe it all gets to be too much. I go see her. It does help.

Hang in there. I am thinking of you.

Michigan Jan

[Brwneyedchica]

Awww... don't give up. I know exactly how you feel, i've faced this same situation several times in my life since i was diagnosed with POTS. Here's a little poem that helps me when I really feel like I can not take one minute more of my life...

When things go wrong as they sometimes will;

When the road you're trudging seems all uphill;

When the funds are low, and the debts are high

And you want to smile, but have to sigh;

When care is pressing you down a bit-

Rest if you must, but do not quit.

Success is failure turned inside out;

The silver tint of the clouds of doubt;

And you can never tell how close you are

It may be near when it seems so far;

So stick to the fight when you're hardest hit-

It's when things go wrong that you must not quit.

[ethansmom]

Danelle,

I am so sorry that you are having so many things go wrong at once. Please don't give up on this One thing that this illness has taught me is how to be a fighter- I do not give up, under any circumstances, no matter what. I believe that there is always something brighter ahead of us when times are rough.

I agree with Nina, you should definitely check out the DINET and NDRF physician lists, because you may be able to find a doctor near you who knows about POTS. We have ALL had the frustration of docs telling us things we didn't want to hear, and it's no fun. If you can find a new doctor, that's the first step. And keep looking until you find one that you are happy with.

I also agree that you should talk to your husband, heart to heart. I know, for me it's nearly impossible to talk too deeply to my significant other (David=emotional wall) but at least at times I have to sit him down and really explain what I am going through, and I make it VERY clear that I know what he is going through too. I try to place emphasis on the fact that this is hard for both of us. Having POTS almost destroyed our relationship at one time. But it didn't!! There is still life, laughter, and love after illness and you have to allow your husband to see that. I allow myself to complain to him only when things are tough- and when I feel decent, I try to have fun with him so all hope is not lost.

Come here anytime you need to talk, and in the meantime make yourself some tea, curl up with a good book or cheesy Lifetime movie, and do some soul searching

[briarrose]

I agree with all the other posts here.

Have a good heart to heart with your hubby and know how he feels instead of guessing. As equally important, tell him how you feel and what your thinking.

Find a good doctor. Take your husband with you so he has a better idea what this is all about. It's not just you, he's involved to.

Debt - Do you have a consumer credit counseling in your area. That might be an answer of stress reduction.

steph

[danelle]

Thanks bunches for everyone's kind words and support Sorry it's taken a little bit for me to get back to you. Still pretty depressed. But all your support sure does help.

Maybe something will work out soon.

Thanks again-you all are the BEST!!!

Danelle

[Ling]

My heart bleeds for you I know exactly were you are coming from. What I am going to say is hard but true. All the strength you require is within yourself. None of us have it easy. I don’t know how I make it through the day at work or how I get out the bed in the mornings, but I do. Damit fight this rubbish and fight it head on. Don’t let your body win, your mind is much more powerful than you realise. I know what you are referring to about your husband. I recommend that you start with yourself first and everything around you will change. Do some research and find a local Doctor that is good. I am lucky to have a brilliant doctor at the moment. But it did take nearly 10 years to find her. We have no cure or miracle medication that will help you. But you can decide to accept your body's nonsense and go on with life. I can’t even play ball with my dogs, at the age of 26, that’s pathetic.

I was on medication for depression for a few months. It is not a sin or something to be embarrassed about. Think about it I promise they work and when you are ready you can leave them again. My brother died of depression, don’t give up.

No one around you is going to help you feel better, you might experience slight improvement if you lucky. Decide today to be the beginning of the rest of your life. I have changed my attitude and you know people around me actually comment that I look better. The joke is I have a smile cover all the same problems as before. For me the best medication was my change of mind. I have 5 diseases that all are link in one body having fun every day of my life. I refuse to give up.

Just take one day at a time. You obviously have an amazing sister ask her to help you and support you thought this.

Read Psalm 23 over and over again, until you get it. The more you read it the more you understand.

Thinking of you!

[danelle]

Ling,

You are so right! I know change must come from me first. I don't know why things are so hard right now. I have had this thing for 17+yrs but just recently diagnosed. It has just gotten MUCH worse over the past year and I'm not sure why. Sometimes I try and say "OK darn it, I'm not gonna let this thing get to me and I will win" then, I go to work and just about pass out, get weak, clammy, sweaty, shaky, confused, etc etc etc.

You are right though, I need to be strong. It is just hard to find the strength right now and I just can't seem to get out of these bad "POTSY" days. THey won't go away!!

Thank you for your kind thoughts and suggestion, I will take you up on them. I admire those of you who can "keep on truckin". That used to be me.

Hugs sent your way and much thanks,

Danelle

[khudsonwv]

danelle - i soooo understand where you are right now. I was just recently diagnosed but i have been sick for two years - I was the breadwinner before and took care of every aspect of our household. now i can do nothing - we too are on the verge of loosing everything - it is shocking what a difference the last two years have made on my family's life. due to 3 heart surgeries and numerous hospital stays - i have hit the $300,000 mark on medical bills - thank god we have good insurance - but we still had $21,000 in co-pays alone last year. I have applied for disability and been denied twice - i go in front of a judge soon and if he does not approve it this time we will be forced to file bancruptcy. I have days were i feel like i am a total failure and a complete burden to my family.. it is really sad that this condition disrupts our lives in soooo many ways.. and before i found this site i really felt like i was alone in this - it really helps to know that someone out there gets it! My husband has been pretty patient so far - but it is stressful for him too....i definately have days where i think he would be much better off with someone else - we are young but its like he is married to an old lady who never feels good and cant do the things we used to do.