Sufferer Newbie with long term medical trauma. formerly active nurse & mom, now restricted life, still trying

[Fredsmom]

Hi all, I'm new here and am just looking for some support and open to learning from others with PTSD.
I have had 25, going on 26 surgeries (next week.) I was born with a genetic disability and my surgeries began at age 2. I had yearly surgeries from 1977-1986. I was born with a chronic swelling in both legs. They were so large, I was never supposed to walk. At the time, the other treatments all failed so they resorted to surgery. Today, it's believed that cutting into this type of disease is the worst thing you can do. I had had many traumatic experiences during these surgeries. It wasn't like it is now. You put yourself on the OR table wide awake, and had to let them strap you down. Next to a huge table of scalpels etc... I won't get in to all that though...

They finally stopped because they found that HIV was in blood products and my surgeries were considered elective. I needed mass transfusions so I was not allowed at the time to continue. Lucky for me, I did not have any blood borne diseases from that time .

After that they decided that I'd had enough. The original plan was to get my legs down to a normal size, then at age 18, I would have plastic surgery to repair the scars. I won't get into the teasing I endured at catholic school in a dress for 12 years ...

Ffwd to 18, no surgeon would touch me because of the amount of scar tissue I had on my legs. So I was left scarred and my legs severely deformed. They really don't even look like legs or feet.

I was doing quite well till I had an unrelated surgery to remove a tumor. This caused my disease to flare up and the swelling moved from just my legs, to my upper body.

This caused a domino affect and I had to leave work and am dealing with numerous medical problems. Many caused by the original surgeries.

I'm trying to find a way to cope and move on, but my life is now severely restricted.

I find myself angry that I worked so hard to make a good life for myself and now I'm disabled after putting myself through college etc... the financial effect alone was devastating .

I am trying to find the light and find a way to live the best life I can but it's hard when you can't do much or even leave the house at times.

Prior to the last surgery, I was a nurse and did exercise and had a very busy lifestyle . Now my life is drs appts and being mostly home bound . I was never a home body.

I don't often share my story as I was able to lead a mostly normal life before.

I have had treatment but I feel they neglect my body issues and the trauma I experienced as a child. Meds don't work for the anxiety and it's worse because all I have is time to think . I just want to let it go and move on. I think I almost feel the whole thing started over as my life turned into the nightmare I have always been secretly afraid of. Being disabled .

My doc thinks that I will get progressively worse as I age. I know I need to start living for each day, but I feel I have lost myself and that I am letting everyone down. I was always the strong one. I am pushing through to be a decent mom to my kids, but I just think it should not be this hard .

I never thought I'd end up here.

Thanks for listening. I felt like sharing my story. I did write down a few books I've seen posted around here. I will gladly take advice.
I hope this post isn't too gloomy. I do have hope that one day I will figure out how to lead a happy life with what I have. That's why I keep trying ...

 

[Teasel]

Hi @Fredsmom welcome to the forum :)

 

[ladee]

Welcome! This is a great healing community.
Glad you joined us.
You have been thru more than most could handle.
But that fighting spirit will help you on this part of your journey also!
Gentle hugs if you accept.

 

[Fredsmom]

Thank you ! I'm glad to be here. Think I'm ready to talk and listen

 

[joeylittle]

I hope this post isn't too gloomy.

No, not at all. We believe that writing honestly about one's experience is an important part of all mental health work. So please, never worry about that.

Have you been formally diagnosed with PTSD? The reason I ask is, you've got a lot of incredibly difficult stuff going on in your present reality, and following a PTSD treatment protocol may not fully address a number of things you are dealing with on a daily basis, physically.

The majority of people exposed to 'qualifying' (Criterion A) trauma do not actually develop PTSD. This does not mean that they aren't dealing with trauma - it just means that there's possibly a different path in getting to where you want to get to - which, at the end of the day, is always something along the lines of 'living a life that is fulfilling'. We all hope to do more than just survive. That's true of all the mental health conditions (I believe, anyway).

I truly hope you don't read this post as saying that your suffering might not be 'sufficient' to equal PTSD. I'm sure you know, as a nurse, that having the right angle on treatment makes a big difference.

 

[Fredsmom]

No, not at all. We believe that writing honestly about one's experience is an important part of all...

Well, that's kind of my prob. I was diagnosed with PTSD and had CBT for it, but I didn't feel the horror at writing about or talking about what I've been through.

I'm currently looking for new treatment but it's difficult finding a good dr.

I'm leaning towards having a new full evaluation done to see what they come up with. I'm not sure that's my main issue. I agree with you, it felt like we were missing something .

Thanks for the info. I'm open to input. I can always use more knowledge !

 

[joeylittle]

I'm leaning towards having a new full evaluation done to see what they come up with. I'm not sure that's my main issue. I agree with you, it felt like we were missing something .

I think that would be super-smart.

Did you do the CBT before or after the more recent surgery that caused your condition to flare/left you homebound?

I've no idea where you are in the US - but for people with complicated backgrounds, I personally like to recommend the diagnostic process at McLean Hospital | Largest psychiatric affiliate of Harvard Medical School. They are affiliated with Harvard, and do a very thorough job with diagnosis - they take the time to get to fully know the client, the history, etc. With the right kind of referral, it is also often covered by even very basic insurance. You sort of just have to check.

 

[Fredsmom]

Interestingly it was before. I'm in PA I had treatment at one of the most renowned places here but as I said, the CBT didn't really help. I've had other therapies, but so far no luck w meds etc... That was all out of pocket too.

I've been looking but not having much luck so far. I'm now thinking that maybe a neuro/psych might be the answer. I have a paradoxical reaction to most ssri/ssni etc...

Thanks again.

 

[Symphony]

Interestingly it was before. I'm in PA I had treatment at one of the most renowned places here but as...

Where did you go?