Dealing with anxiety - mine and others!

[pennyia]

Prior to the Day after Thanksgiving, 2004, I had never called 911 for an ambulance nor had I ever gone to the ER for myself. For my kids, yes, for me? Naw, I could always 'wait and see'.

The day after Thanksgiving, 2004 at around 3:00 am, I woke my son, asked him to call for an ambulance - and ended up in ICU for a day followed by a week in the hospital. I'd had a severe, bilateral pulmonary embolism (PE for short). 90% of the world has probably never heard of this condition. The other 10% probably know someone who has had one or lost someone, and the few remaining have had one themselves. Not many of the remaining percent, why? Because it has only a 66% survival rate. It's symptoms are often misdiagnosed.... and the vast majority of the time, it is only identified during autopsy.

I was lucky. My father died of the same condition when I was 3... he wasn't so lucky.

After this, though? it kind of warps the mind a little. I was put on blood thinners (a very dangerous drug) and sent home. I had issues, I'd go back to the ER or the doctor for every little (and some big) things. I freaked out easily, I was SCARED. I was scared the medication was causing issues, I was scared the medicine didn't seem to be working. I had pains I shouldn't have had. I had occasions where my head would get really, REALLY cloudy and I had trouble speaking - like at all. What would happen? I'd end up in the ER again. 100% of my trips to the ER ended with me being sent home and getting told "I was ok, nothing seems wrong" - even the 10% of the time when something really was wrong, but I was getting misdiagnosed.

Getting misdiagnosed? Another mind-bender. I knew I had almost every symptom for a TIA (a warning sign of stroke). How was I so sure? Becuase the nurse pounded that information into me while we were sitting in the ICU so that I would alert him if I had any of those signs. Then? The five days in the hospital? I got told the same thing at least a dozen times by at least a dozen other nurses and doctors. I'm not dense, I learn quickly. I learned quite well what to look for and when I experienced it, I followed their orders and went in. I was mis-diagnosed... Told repeatedly I didn't have the TIAs I thought I was having. How do I know I was mis-diagnosed? Because people who have untreated TIAs continue to have them until they have a stroke. Which I did... about three months after the TIAs started.

But, it did take 3 months. Three months during which I started out very scared and worried, went to several doctors... got told by all to go home, and don't worry, nothing seems to be wrong. To only get extremely frustrated and -- well, honestly, take it out on myself. I questioned my own ability to read my own body signals and maybe I was making it all up... until I had my stroke. Then I got MAD.

I am so cynical now of the medical profression. I have always HATED to go to the doctors to start with. And ER? Don't get me started. So, now I am at the opposite end of the panic extremes. Instead of going in every time I turned around... I AVOID going, at virtually all costs.

I had severe chest pain - about 16 months ago - so bad that I couldn't walk, could barely converse. I drove myself to my doctor's office where I collapsed. He sent me across the way in a wheelchair for a test (afraid I was having another PE, I wasn't)... after the test, they came out to me where I was sitting in a wheel chair and told me "go home, there's nothing wrong". I burst into tears. They wheeled me out to the front door. I ended up calling a friend, as at that point, I was afraid to try to drive, but was going to go home... after all, "there's nothing wrong". She refused to drive me home and instead took me to another hospital's ER. Who shot me up with morphine - and "go home, there's nothing wrong".

My sister then picked me up and drove me to another hospital where they ran more tests and said "go home, there's nothing wrong". I wasn't able to work for four weeks. No one could explain why. They still don't know why... but I do know that unless I'm gasping for my last breath, I really don't want to go through this anymore.

Both of those trips to the ER were someone else's idea.

Last week, I was back in the ER again - again someone else's idea.... I had knee surgery a month ago... during that month any aches and pains I had were gradually getting better, worse if I pushed myself, better if I took it easy. During that month I had a lot of swelling in my leg - but it was gradually getting better - worse if I pushed myself, better if I put it up. Well, last week, without pushing myself - my leg started to swell and my calf was hurting. The most common two symptoms out of four for DVT - a clot in the legs. Since I've had both a clot in my lungs and in my brain, I already know that I have an extremely high risk of clotting again - that's why I'm on blood thinners. Having knee surgery is a risk for clotting even if you don't have the history - so (as always) I've been uber faithful with taking my medicine and being aware.

I really didn't think I was getting a clot, and the physical therapist said she didn't think I was getting a clot, but wanted to be 'sure'. The whole better safe, than sorry routine. Which by the way, I prescribe to this and preach it often - that is ... to everyone but me. Nope, not me... I'm fine, I'm taking my medicine. Now, honestly? Even on the medicine, you can still clot. Anyone can clot with or without warning... with and without symptoms.

But, I managed to put her off... by saying that I would get my blood test done asap to check my medicine's affectiveness... if it was down, then I'd go get it checked out. So, I call the doctors office to tell them to be on the lookout for the test results. They want me to go get it checked out anyway... I put them off.... saying, but if the medicine's fine??? surely, I could wait and see. Unfortunately, before I got the test results, my leg started turning pink.... not red, but pink. But, after putting everyone else off, I started to pick up on their anxiety. I was afraid to wait for my leg to turn red.... after all, redness is symptom number 3 (btw - symptom four is warmth in the calf). So, I go to the ER, they check my leg out. The answer? "Go home, there's nothing wrong."

ARGGH! Why did I let them scare me into going? I hate this. And, honestly? Anyone else give me those symptoms? I'd drive them to the ER myself. So, why do I hate it so much? Why can't I convince myself "better safe than sorry?" What a waste of time. Which only means it'll be that much harder to convince me to go if there is a next time.... and I'm sure there will be.

[tiggerrrt]

Apr. 28, 2008 at 6:38 PM

You need to visit a hematologist... a blood specialist.  They will make sure you don't have a blood clotting disease ( I do....Factor V Leiden) and can help you best.  Also you can get phlebitis...painful calf, red/pink area, no BIG clot but you clot the surface veins, not dangerous but painful...  You also will get some need answers.

Lisa

[pennyia]

Apr. 28, 2008 at 6:44 PM Actually, I have seen a hematologist, and yes I do have a blood clotting condition - not FVL, but Protein C Deficiency (which is quite similar in effect). It's not that I have questions about the clotting... it's all about the whole situation around how I keep ending up in the ER when there's nothing wrong. Initially I was always afraid something was wrong (feeling a bit panicky), but now that I'm convinced nothing is ever wrong - someone else scares me into going. I end up going because someone else panics. I would happily chose to never go to the hospital again. Not, that I'm not thankful I'm getting 'treatment'. Because I am... but because there's so little they can do - and even when I do go, I'm not getting any treatment.  I'm just sick of dealing with the whole mess.

(Original Poster)