Pulmonary Embolism Support Group

By far the most common form of pulmonary embolism is a thromboembolism, which occurs when a blood clot, generally a venous thrombus, becomes dislodged from its site of formation and embolizes to the arterial blood supply of one of the lungs. Symptoms may include difficulty breathing, pain during breathing, and more rarely circulatory instability and death.

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cupcakedecay 05/12/2009

Hello all,
So this is mostly more of a rant then a discussion!

So as an update, I have been off coumadin almost 2 months...
My paranoia comes and goes... i had some major panic attacks when I first went off. I went to the er two time with what I swore was a pe but turned out to be panic attacks.

Now im just complaining about a general feeling like poop feeling.
I got my period finally after 2 months last week, and it was a mean one lotsa cramps and headaches went with it! ( I have irregular periods which is why i usta take the bc ..that caused my pe, so now i gotta rough it without bc)

I figured once my period left i would be feeling all better!!!
Then I woke up on friday with one of those stye things in the corner of my eye which put a damper on my whole weekend!!!!!!

Then I woke up monday feeling like I was getting a cold my throat hurt and my nose and ears are all stuffy... im a bit better today but not totally!

Im taking some ecnasia ( I dont think i spelled that right but i sounded it out) which is gross, but hoping to boost my immune system!

This morning I stepped on a peice of glass from a wine bottle that had broken like 2 months ago... we have cleaned the floor a million times but little tiny peices keep poping up...

I joined weight watchers yesterday, which I would be more exited about if I didnt feel like crap. I really want to dedicate a lot to loosing weight however, it just seems like one thing after another .... I feel like im waiting for me to feel "perfect" I think my expectations of health are really unrealistic, I think Im super hyper aware of when im not feeling 100% and instead of just going on with life like i may have before my pe, I allow something as simple as a stuffy head stop me in my tracks...

I wish i could be tougher again, and not so intently focused on my health when it comes to simple things such as allergies or a cold....

I really need some encouragement from my PE, DVT friends. My gf and therapist and family tell me to just "Push through not feeling well"
or to stop obsessing about not feeling well bc it makes it worse ( which i do agree with) But not its come to a point where i want to truly dedicate myself to loosing weight starting off low with exercise, with my treadmill and wii fit. I am starting to eat right and acccording to the weight watchers plan as of today.

PLEASE TELL ME its worth it to push through feeling bad and that someday Im going to be healthy and energetic again! I have many days where i feel as though my pe never happened and im thankful and then i have some days where i feel those lovely reminder twinges in my chest, thankfully i usually pop a couple advil and they usually go away....

I just want to know if someday I will be healthy and happy again. My dr says that I dont realize how much of me feeling down and sluggish has to do with my weight and if I could just devote myself to loosing weight that I would notice a huge difference. Im sure my weight has something to do with all of this bc over the last 11 months since my pe i have gained a huge amount of weight about 40lbs... so now my road to being thin and healthy have almost doubled ugh. anyways...

Im really reflecting on life I just passed my 11 month point on MAY 10th wow I cannot believe im almost to a year....

Anyways... sorry this is long but you all know to expect a novel when dealing with me..

LOVE YOU GUYS!

deleted_user 05/12/2009

Sorry you aren't feeling well. I'm only 2 1/2 months post PEs/DVT diagnosis. I haven't been sick yet since a few weeks before diagnosis when I had horrible bronchitis. A lot of my co-workers have been sick w/sinus cold crud and I'm so worried about catching theirs much more now than before I ever had PEs. Thankfully, I haven't caught anything. I'm sure it must be scary for you coming off Coumadin as I think it makes us all feel it is a safety net. Just try and celebrate all that you have overcome when your 1 yr anniversary comes up next month on June 10. You have survivored and as they say "this too shall pass"!

Hugs and blessings,

Tabby

dero 05/12/2009

OK, cancel all of this... THIS IS YOUR BIRTHDAY!!!!
Cheer up and enjoy this day...
Happy B-DAY Ash!!
:p

deleted_user 05/12/2009

Happy Birthday and I do too agree that sometimes are better than others. But if we a;ways give in tp the bad days we can literally make our selves sick. I really hope you feel better soon.

cupcakedecay 05/12/2009

ooo no everyone thinks its my b-day.???? lol my bday was March 6 sillys!!!!

deleted_user 05/12/2009

LOL Dero gave you a new birthday to cheer you up, I think! :)

dero 05/12/2009

Yes, that's it Tabby... ;)
Shhhhhhhhhhhh... :)

beecute 05/12/2009

Like, OMG!
I missed your birthday!
a great big cupcake with extra icing and sprinkes!
(and it is magic so it only has 1 WW point)

I realize I am playing along...but I hope this cheers you up a bit...

deleted_user 05/12/2009

Cupcake, I don't think that life will EVER be the same. And so, we must find a new "normal." It has taken me 18months to get about 3/4 of the way there. Wishing you luck in your endeavor with WW, I have my own lb's to lose. Blessings, Teri

deleted_user 05/13/2009

Hey honey, chin up...you're doing so great! You've gone through so much over the past year - but, you may not realise now, but you really are doing so well, and you've come so far! In a few years time, you'll look back and think, "yeah all this stuff was absolutely rubbish, but it's made me the stronger person that I am today"...you can do it honey, and if you need a chat about anything at all, I'm always here for ya! x x x

deleted_user 05/13/2009

I remember an episode of Winnie the Pooh where they celebrated a non-Birthday! :) So happpppyyyyy Non-Birthday, Cupcake! Great idea Dero, so when's the party??

cupcakedecay 05/13/2009

aww thanks this is the best non birthday ever!!!! MAUH EVERYONE...

feeling beter today, sometimes i think my low mood makes me feel sick too isnt that weird...

Well taking it one day at a time, im hoping loosing weight will give me some energy and bounce back!!!! ( less jiggle tho ) lol eww i know sowwie thats gross!

deleted_user 05/14/2009

Even though I am only about 3 1/2 months post diagnosis, I feel great, with the occasional day of a slight chest tightness (which sometimes i think is due to my lungs being more sensitive to things such as pollen and the like) or i get a little pressure on the top right side of my chest near my shoulder and it pisses me off cause i'm now paranoid about my dilated right axillary vein that i've had since I was pretty young and I never cared about it before. Now i'll get so paranoid about it as the cause of my PE and that it really wasn't the birth control and i have little panic attacks and everything can just get real crazy. But even since getting out of the hospital i've made sure to keep up with my workouts and to eat fruits and veggies. I make sure to thank God (or if you don't believe that's fine too) for giving me the experiences i have had and for the present day. When I'm running especially i tell myself that i am strong and i will be stronger and that it will be ok. Yes, everyday is worth pushing through. And if you take it one day at a time it might actually get you farther than trying to think about tomorrow and next month or next year. I drive myself crazy sometimes with thinking about everything like school or my boyfriend and whether or not it is worth it and maybe i should just give it all up. I know I can't do that though. I'm way to hard on myself sometimes. Oh and I've always been one who had to work out to feel good and i have to watch what i eat so i don't blow up so I know where you are coming from in losing weight. I definitely think that if you lose the weight you will feel better. I strongly encourage physical activity too, it helps me feel better. Resistance training is really good for women when it comes to losing weight. You have gone through a lot, and it's natural to feel down sometimes, but just try your best to get on the right track. I wish you the best of luck!

deleted_user 05/15/2009

YOU are going to get better each day! The people on the outside don't understand what you and all of us have gone through. IF they ever experience something like this.... they would say that they felt so bad for not being more sympathetic. I agree with Teri (flipperclot) about the "new normal".... we don't want to get obsessed, but we need to have a heightened awareness about our bodies. Maybe you should go back and look at all your posts from the beginning.... I did that and am amazed at how I have slowly progresed.

I know I'm still very nervous about coming off the coumedin, but I'm waiting until July or August. Don't want the stress in June..... you have already come off and you're doing great. Maybe your doc will let you get a d-dimer test like Nancy to see if your body is clotting, but I personally think you're doing wonderful my friend!! :) AlexandraK

deleted_user 05/16/2009

I can relate to what AlexandraK said about other people and sympathy. I used to care a lot more about how other people view me and how they think of me, but after the PE that decreased a LOT. It has served me well too. Best thing to do, focus on yourself. I also know that I see other people in a different way now as well. Before my PE I was a perfectionist and very healthy with everything going for me and I thought that pretty much anybody could be that way too if they just put a little more effort into life, school, health, etc., This experience has definitely given me even more compassion for others and I know that if someone seems like they're having a bad day, then there very well might be a very good reason why. Even with all the bad things that come with a PE, positive things seem to be there as well.

deleted_user 05/20/2009

I am so sorry I have not been in touch sooner to say congrats on coming off coumadin. I stay in touch with DS on my emails and check in here now and then.

Well, I have to say, IT REALLY DOES GET BETTER. I never thought I would say that. When I came off Warfarin, I joined a Slimming class, but my heart was not in it so I gave up. I am loads overweight, but I felt I needed to get over my PE trauma first before embarking on one of my obsessive weight loss programs - I was tired basically. I feel ready now to start getting healthy and I am doing it in small steps.

I still get the twinges and panic attacks now and then, but I get through them and they become much less and further between. I read on a post that we will never quite be the same again and that is true - we are now EVEN better - yes, we did not want this to happen to us, but it has and now we are so much better informed at how important life is and we should use this experience to make our lives happy.

We know the medical system inside out and we know how totake care of ourselves. If we have any illnesses in future, we say we had a PE in the past and we get seen sooner. If we get pregnant, then we have extra care from specialists.

Remember everyone can have a clot - a DVT, a PE - that is every person can have one - some do, some dont, some are more likely, some are not, but we have no control over that - we can control losing weight, taking supplements to naturally thin our blood and looking after oursleves by regular check ups with our DRs. We have had a clot and SURVIVED - therefore, we SURVIVE clots - our bodies should be congratulated for that at least. Thatis how I like to think about it - we are intuned to our bodies warning systems and now we are MEGA in tune cos we had one before so we can always be vigilant in the future.

Also the amount of research is amazing on clots and new reserach is happening all the time and so are new medicines. I know warfarin gets a hard rap, and i am not its biggest fan, but at least there is a medicine out there that can protect us from clots.

Anyway, I have ranted, but I overall wanted to say that Ashley, it does get better, I promise. Email me anytime if you need to chat and you dont see me on here, or facebook me.

LOve Dawn x x x

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