I actually think the only way to really get past the fear and anxiety is to not care and say if this is what kills me, fine. I don't mean not caring about yourself, but to let go of the hyper vigilance. It's not doing anything for you right now and it's just so hard to maintain.

Counseling may help. I found it helpfulness after my PE, especially for the anxiety.

Take control of what is within your control. The rest,let it go.

It may seem bizarre but the advice that helped me the most with the PEs and the COPD was to do the things I fear the most and the death of fear is certain.

I did that with my fear in a couple of areas and it worked. I still have to deal with long drives to places I need to go.

Counseling helped me most with family issues and Zoloft helped with anxiety responses.

I agree with rmb, I control what I can and I don't worry about the rest and let it go successfully in most cases.

Must admit, I can understand your on-going frustration / resignation. I'm less on the anxiety road, rather have some chronic lung clots kicking around and the result is I'm feeling quite similar to you, even if the reasons are a bit different.

For anxiety, there isn't generally a silver bullet. One thing that may help would be do something similar to the lifeblood buddies
http://www.thrombosis-charity.org.uk/buddy-system.php
Sometimes, just talking it over with someone who has been through it helps. I'm sure that there must be similar volunteering opportunities in the US. As rmb suggests, counselling can help and have a chat with your doc about it and even if it means going on some medicine for a short time, do it if it helps. Try and see what is good/fun positive in your life (holiday, family/friends, interest) and try and focus on that?

Even when our kids drive me mad, they help to put things in perspective. Similarly, getting out on my bike helps, even if I can't do too much.

I'll just apologize now, because I know my response will be longer even than your original vent. I do understand how you're feeling, I think most if not all of us here have experienced something very similar for at least some of our time in recovery. I will admit that I didn't have anxiety as amped up as yours apparently is, but the thoughts you describe having, and the worry about what you feel physically, is it something or isn't it? That's definitely something I've been through.

Some of the things I'd try to do was really burn into my mind what I was feeling when I went to the ER or GP and they checked me out and things were fine. If those symptoms return again, then you can stop and think, 'Yeah, this is what I felt before and I was okay so I have some confidence that I'm okay now too.' We tend to forget that our bodies sometimes feel pain from an injury that we're long recovered from. I'm thinking of this right now because I've just had an ankle injury, which is mostly feeling alright but I still sometimes move it just the wrong way, or my son steps on it, and it hurts. It doesn't mean the whole thing is completely back at square one again, just that it isn't 100% yet either. I broke my arm when I was nine years old, and I still get pain in that arm sometimes. But I never worry that my arm is broken again. I know the example is a little bit hyperbolic, but I hope you get what I mean. Just because you feel some pain doesn't mean that something is wrong.

As to the anxiety, you may feel like you don't, but you really do have control over the extent to which that affects you. I do think if you and your doctor believe medication can help, then that's great, but really that needs to me augmented also by you emotionally taking control, having a process you use to deal with it. A pill by itself can't fix everything, and we all need to learn that anxiety is truly something we have control over, we're not just idle victims. I mean, I'm sure on some level, if you take a step back emotionally, that you can see that feeling so afraid of dying, it makes you not want to live is sort of silly. Please don't think I'm trying to diminish what you're feeling, because I've felt similar things, but for me it was helpful to think about what an odd contradiction those two things are. And the logical, reasoning part of my mind won't allow me to give in to something which is ultimately nonsense.

Assuming you've first been keeping generally busy and not allowing yourself just think about your health all the time, and that you first try distracting yourself with an activity if you feel some pain or SOB (because it's amazing how many 'symptoms' disappear when we don't let ourselves think about them), here is the way I would deal with it when something came up...

When I had a physical symptom, I'd kind of consciously shut down my emotions and do my best to evaluate what I was truly feeling physically. What degree is the pain or SOB, is it intermittent or constant, does it have a pattern, is what I'm feeling in the realm of 'normal' (been checked for the same things at other times and been okay)? That process helped me to think logically rather than emotionally about whatever was going on in my body. Also (especially if feel you're experiencing SOB), consciously breathe, make yourself slow down your breathing and you can tell whether you're truly short of breath or just anxious. When I had a PE, it was actually impossible for me to take a deep breath, so no manner of trying to control my breathing would have made a difference.

If I did that sort of self-check and still felt like there was maybe reason for concern, then I would do myself the things I knew the doctor/nurse or whoever would do first on seeing me - I'd check my pulses if I felt I might have DVT, I'd check my HR (and again, bear in mind what your HR might be even when you're physically fine but just anxious). If those things seemed pretty normal, then I felt like okay, this is just what happens sometimes, but I'm actually fine. Pay attention to what is your 'new normal' and learn to accept it.

I don't know if this will help or not, but I think you're at one of those difficult points in recovery, because it really at this point is less about you being physically well and more about dealing with it emotionally. And it's like there's a whole new baseline to get used to. I remember being miserable at that point in time until I learned to get used to it and accept it.

Could you get another clot sometime? Uh, yeah. And you could also get hit by a car tomorrow when you go out to get groceries. But unless you're letting that thought stop you from being a productive part of the world, you shouldn't let the thought of another blood clot control you either. One of the best things you can do for yourself is just accept mortality. That is something not too many people in their early 30's do, and I think it's the last thing in the world we want to think about (I was 32 when I got PE). However, it's liberating when you realize that you really don't have as much control over your life as you thought you did. Yes, we need to be smart and take as good care of ourselves, be as healthy as we can, but we truly never had control over our lives. Having had PE didn't change that fact at all, it just has shattered the illusion, but that doesn't have to be a bad thing - I actually found it to be liberating once I accepted it.

Oddly, for me that moment came when I got my second blood clot. Now I'm not recommending you go out and get yourself a brand new blood clot (haha), but I had believed I could prevent another clot from happening. Then I got another one out of the blue, for no reason at all. But instead of being destroyed by it, I just felt free, because I realized I couldn't control it, and probably even more importantly, I realized that this thing I was afraid of happened, despite all my best efforts to prevent it, but things were still okay.

One idea you mentioned, and I'll just be honest that I don't agree with, is going back on Coumadin to calm your fears. I am a really big believer that decisions like that should be medically based and not emotionally based. And apparently your doctor feels there's no reason for you to be continuing Coumadin, so why do it? I respect the right of each individual to make their own decision, but I just can't imagine why anyone would voluntarily take an inconvenient and somewhat life-limiting medication just so that it provides security against something which is not even a real threat. If anxiety is the problem, then treat the anxiety. It doesn't make sense to take an unnecessary medication which could in itself cause you harm, just to be a security blanket. I do have to take it for my life, and I've gotten used to it, but I absolutely wouldn't do it if it weren't necessary. I think it ultimately becomes a little harder to move completely on with your life after PE if you keep taking the primary medication associated with the whole experience. And the longer you take it, the higher your risk of having a bleeding issue. Even if it's not bleeding to the point of being life-threatening, it can still be inconvenient. So talk to your doctor about your anxiety, get his/her suggestions for dealing with that, and get a plan of action for treating it, rather than taking medication for your blood which you don't need.

Bear in mind that having recurring clots is much less common than it would appear by reading this support group or any others out there. And I never am very sure how helpful this is to say, because obviously I did clot again, but I also know that I almost immediately knew when I had another clot - and I had had other instances of being concerned something might be wrong, but when I had a clot, I KNEW it was a clot - going to the doctor for diagnosis was a formality, albeit necessary also to start treatment again. But recognizing it early is a good thing, because earlier treatment means much less chance of any real danger.

I am sorry for all you're going through right now, and I know it's hard. In a sense, it is true that we're never the same again. I think that even when we can let the anxiety go, we still feel some responsibility to evaluate physical sensations which might indicate clots. It is one of the things I have often complained about, this need to assess the things I feel rather than just say, 'Huh, that feels weird,' and not think more of it. But the truth is that even before PE, we got weird pains or sensations from time to time that went away on their own. And we never thought much about them, so it makes sense that we still get them from time to time after PE too. I think it does take time to find your balance after PE, where you don't freak out over every twinge. It just takes more time and more experience. As not fun as the process is, every time you get checked by your doctor, you should be building your confidence to know what it's okay to feel, and know that you're alright still. Hang in there, it does still get better as you get more experienced with your body and life post-PE.

When I had my first clot it was thought to be pregnancy related. It was really hard worrying about my baby and my other children but then I would also think to myself, there are some things I can't control but the one thing I could control was my reaction to it. My dad was great he will always say to me 'it is what it is.. Keep moving forward that's all you can do'
I took my injections for. The time the dr recommended , went off them when told it was safe and never gave getting another clot any thought.
3 yrs later I did clot again ( I always worry that saying this will make others stress over this possibility...Turns out i have a genetic predisposition to clotting)
I went to the dr because I was really short of breath...still didn't think of re clotting. She looked at me, looked at my history, took a d- dimmer and sent me off to ED. The ED dr was great, when I came back from the scans very gently told me of the severity of my clots, had me admitted and began treatment.
Strangely this second clotting experience gave me an amazing perspective on life.
My husband tends to worry about everything. He stresses and over thinks and catastrophise much in life. He tends to get upset because I don't . Not long ago I said to him that whilst I understood that he could get so stresses out, I choose not to. For me it is as simple as that. I don't want to waste my energy on it. I understand more than many just how fragile life is and just how little control we have over much of it.
I have been actively challenging my fears...going on long drives further than my usual 10min from a hospital...going with my children for their first overseas trip...ending up in hospital on said trip in a third world country but still being ok....going on an elephant ride, being terrified and then looking at my children's joyful faces and thinking I could choose to be terrified or I could simply enjoy the ride.
Now my life is much like that elephant ride, sometimes terrifying but beautiful at the same time. If I stay scared how many fantastic experiences will I miss on the way.

Thank you to everyone for your responses. I'm still struggling. I am still trying to wrap my head around normal vs. not normal. All of my blood tests are okay, but my brain will not compute. I got a referral for a therapist from my GP. I'll be calling them on Monday. I also may request to get a CT scan from my GP just to see if there is something else going on. At this point, I'm just so tired and sad. I hate feeling like I'm waiting to die instead of living. I'm trying to take all that you've said to heart, I really am. I have four kids, ages 21 mo - 9 years and I'm trying to find joy, but it is hard. Thank you for your continued support throughout all of this.

I'm very glad to hear you've got things in the works to see a therapist. I didn't have the means to see anybody, but I absolutely would have if it had been possible, and I'm certain my emotional recovery would have been an easier path with some of that support, so I'm very pleased that you will be able to get that.

I think I might have mentioned this to you in the past, but I think it's the kind of thing that sometimes needs reminding anyway. PLEASE do not underestimate the effect that having young children is having on you as well. Many moms of little ones, even when they're healthy, sort of lose their sense of self. And this might seem like a horrible thing to say, but your youngest is at my personal least favorite age. Sounds horrible, I know, because they're so cute also, but to me that period from the time they start walking until they're old enough to start understanding limits and getting some judgment, not sticking everything in their mouths, its just the most miserable time! Because they have these legs that just started working and generally want to run everywhere, all the time, but as a parent you basically have to stay on top of them all the time to make sure they don't hurt themselves. I intensely disliked that age. And all that physical energy you have to put into just keeping the youngest ones safe is felt more for you because you likely have such a limited amount of energy. It a really tough balancing act, because essentially your family needs more from you every day than you actually have to give. So rather than being able to just focus on yourself and getting yourself strong again, you have to try this impossible balancing act. (And by the way, I only had two children I was dealing with, I don't even know how I could have managed more.)

My point is, just please remember this is a really tough spot you're in, but the kids do keep growing and things do slowly get better over time. Joy is a hard thing to find when you feel like you're drowning, but I know something that helped me was to focus on the small moments that brought me happiness every day and try to not think about the big picture (of everything I wasn't doing well enough). If you're not doing it, do try to find some way to take some time for yourself. I feel like that was a real lifeline for me. I didn't do anything special, but I would take walks when I could or as silly as it sounds I'd just go to the library by myself in the evening after my husband was home to watch the kids. Thankfully, our library was really inviting and had areas that were kind of cozy, and I'd just go there to read for awhile in peace. My friends used to even say, wow you go to the library a lot, like that was a super weird thing to do, but that's just what worked for me. It wasn't physically demanding in any way, it kept me out of the cold, no one expected me to talk to them, and I could just sit quietly for a period of time without anyone needing anything from me. In nice weather, I'd go to an arboretum and do the same, because I just needed peace. Mind you, this was not just some selfish luxury, I really honestly needed that time, and thankfully my husband realized that and supported me in giving me that time. If you aren't doing something similar for yourself, please try to find something that can work for you.

It sounds so clich to say, hang in there, things will get better, but really they will. Some things get better on their own, as the kids get older, there are aspects of life which get easier - the older ones can help more and the younger don't need so much constant vigilance. Your body should continue feeling better over time, but of course some of that does depend on choices you make too, eating healthy and finding out what kind of reasonable exercise you can do. I had a love/hate relationship with exercise for a long time, I guess I kind of still do. I naturally love physical activity, but it's a challenge figuring out how much you can push and where you need to stop, and that line does change over time. It's a frustrating process. But please rest assured that over time you do figure this stuff out, you do learn what your limits are so that you're not constantly pushing yourself past them. But whether it's through time or experience, things do get better.

I'll agree with what everyone else has said. I'm really excited for you that you'll get to see a therapist and I really hope that'll help you make some progress past the anxiety, fear, and depression that seem to be ruling you right now. Keep in mind, also, that not all therapist are created equal. If you don't "click" with this first one (or actively dislike him/her), ask for another one. I've had therapists that I loved and ones where I wasn't even sure why they were doing that job.

I've definitely dealt with some severe bouts of depression in my life. It makes everything so much harder to do and its hard to get up enough energy to "do" stuff, nevertheless have enough energy to be happy about stuff. Plus, trying to stay on top of four kids has got to be really challenging.

If you haven't already, ask for help and level with your friends and family about how you're doing mentally and physically. For me, I kept my feelings a deep dark secret for ages, even though I was taking meds and seeing a therapist. When I finally "outed" myself to my friends and family, the support was really amazing and so, so helpful. Now is the time for you to lean on others, if you possibly can, and get some help. Because, you need it and you really do deserve it as you try to put yourself back together.

I'm not sure how long you've been on the meds, and I don't know if they are anxiety meds or depression meds, but keep in mind that many depression meds won't fully start working for 4-6 weeks. Also, if your doc is the one who has been prescribing the meds, you might ask for a referral to an actual psychiatrist. They specialize in these kinds of meds and might be able to figure out a combination that works better for you and can help turn off the worry and fear as you learn other coping mechanisms.

Also, if you possibly can, try to take a walk every day. Getting a little exercise increases endorphins and being out in the sunshine can increase feelings of well-being. Every little bit helps when you are where you are right now.

We're all pulling for you. I hope things start to shift for you soon.

You will feel normal again, it may be a different normal and may take a while, but you'll get there. I'm almost 3 years out now and I was past 2 years before I even started to feel somewhat normal again. I STILL have my days when my clot-anxiety is high, and still have little reminders here and there that my "new" normal is not the same as my "old" normal. The first really cold weather of the season is always a big reminder to me. My lungs just don't tolerate cold, and I haven't managed to get used to that yet. This past week I walked out into freezing cold air not even thinking about my lungs, and sure enough, the inhaler had to come out. I too had very severe anxiety and depression, and totally agree. Counseling and a Psychiatrist are the right way to go. I still see both of mine, although not nearly as regularly as I did 3 years ago. Best of luck to you!