What more?? looking for advise?

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Had my appointment with a PCP yesterday, went well, got all the paperwork I needed done. Big thing is that now I don't know where to go from here. That paperwork will keep me out of work until January,(we well decide then if I have to be out longer)(Still have to find out from the insurance what the amount that It pays out so I know if I can pay all of my bills)

It took a lot of time for my to get over the fact that I need to accept that this is what it is. I am ASD (Autism), but very high functioning. My mom figured out the other day that I do a lot of masking when things at not okay. That is something that I have been working on not doing around doctors but also being upfront about it as well.

One of the things that I have fought is the idea of not working at all. Truly after today my mom sees just how bad it is.

I truly take everything people say here in. I am thankful that you'll are here and willing to give advice. I deal a lot with the flight mentality when things get bad. I tend to shut down and not deal and if I offended anyone by re-asking the same answered question, then I am sorry.

I don't even know where to go from here with all of this. I went from being in school for my masters, to not. To having the life that I was trying to build fall apart.

I was not okay after surgery and I am learning that now.

There are things, questions that have to be addressed and some of them my lead to answer that I do not want.

One big thing that came out and was brought up by the PCP that I saw yesterday was the fact that I was seen in Florida in November on 2018 for gut issues and then never did a CT, they sent me home without even doing blood work, figure I was just constipated... He feels like that is something to be noted because just a few days after that is when they found out how bad what was in my guts was.

I have been told a few times now that there are things that do not make since with things that happened in Florida and that worries me.

Now that I am here in PA. I have to see just what can be done to get me back to a normal life or I have to accept that it will never be normal again.

I am ready for that if it goes that way but I truly hope that there are brighter days before me.

I will be addressing a lot with doctors in the next few days as everything is switched from short term to long term disability and hope that everything goes better. (Good side note is that I now have a direct patient advocate so that I have someone that will help make sure everything is being done so that has been good as she reaches out and sets everything up)

Now I just have to figure out what other test, and things can be done to get a good idea of what can be done to get through this...

 

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Florida Guy,

First congratulations on writing down your feelings and issues you are dealing with. All of us on this forum are dealing with our own personal issues and feelings on how to best deal with them. You are not alone.

Of everything you noted the best comment was that you have found a patient advocate to help guide you through the system. That person will take much of the mystery of how the healthcare system works away from you. I would still recommend that you embrace the support of your mother to talk and hopefully listen to your personal concerns. If not her, then reach out to a close friend, or to a mental health professional.

Just as you are using this forum as a sounding board to articulate your feelings and concerns I believe you need someone that you know to provide that same support. It is unfortunate that the doctors in Florida didn't conduct tests and confirm an early diagnosis. That said, it sounds like you are getting good care now.

Please continue to give us updates.

Greensleeves

 

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Praying for you.

 

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Good for you. You are becoming a bulldog advocate for yourself and seems like it is paying off

 

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Hi FLGuy, You are really taking charge of what's happening to you and you're just not going to let go! And that's great! Just keep at it. It's good that you have written down your feelings and as you continue on this part of your journey that's a good habit to get into, just like making a journal and that'll help you track your progress and you'll be better able to tell those giving your care just exactly how you're feeling!
Seems like the best thing her is your direct patient advocate. I know a lot of us have been hoping for quite some time that you would find a competent one and now you have! It's too big a job to do alone and with this advocate that will help ease the burden by a lot.
And you are recognizing that you do deal with the "flight mentality." Knowing how that affects you is a big plus in how you conduct your quest for better health. I like @Greensleeves351 suggestion to continue to get support from your mom, as well as talking with a therapist.
Just keep pushing and those brighter days ahead for you will come. But it's going to take a while and it will be worth the effort!
With our continued best wishes, please keep us posted.