this is a really complicated situation and wanting all of your advice of what you would do. I’ve had aps probably all my life and wondered what is wrong with me and it’s been a huge burden that has made me quit many things. Including very good jobs and grad schools. I would get in these stressful situations where I would just collapse under the stress and get headaches and not be able to think and get really tired. All was aps. I also have lupus and tested positive for porphyria like another poster. I also have eds (elhols danlos). How I’m alive I don’t know. I’m sure I have autism probably from the blood clotting so I guess I’ve made lots of enemies. I have a psycho ex who has literally been trying to harm me for the last 20 years or maybe it’s this kid who was moved to another job bc I found him sleeping. In any case I’ve had multiple breakins in my house and apartment, raped, car destroyed in an accident, computer and purse stolen,
Went though a terrible divorce had my kid taken from me and then I got back with him so I could see my kid again. So he’s really an ableist in denial I’m sick. I’m now pregnant at 40 with a second child. I know completely dumb move. He accessed me with child support even though I hadn’t been able to work in 4 years since birth of our son.
So what should I do? He complains bc I can’t go out bc I have nausea from pregnancy , have severe sun sensitivity bc of lupus and porphyria and I’m pretty sure he won’t stick around if I get sick again I don’t think.
I would like to get on disability to have a steady income but I know it’s really difficult. I know I need probably get with someone who will support me even if I get sick. I’m just being realistic because I know as a sick woman I can’t make it on my own and I hate having to rely on someone financially. Only real plus that I have is that I can be attractive. I used to be able to hold a well paying job but those days are over. The other thing is my phones and computers keep getting hacked so wfh isn’t a possibility
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I'm sorry to read your distressing story and given your traumatic history, I think you should see your doctor and ask for help. Your doctor is the best person to see, as they can make recommendations for you. I do think, you need and deserve to have someone listen to you. The internet is not the best solution, especially anyone suffering from such a traumatic history.
Hi, welcome to our forum for Hughes (APPS) forum. We are here to offer support using our experiences going through the symptoms of APS. None of us give medical advice as we signpost sufferers to their relevant consultants, as you know we can all be so individual with our diagnoses and treatment plans.You have so much going on in your life it's no wonder you despair and feel the way you do.
I am presuming you are not in UK? If I was in your shoes (as this is the question you have asked) I would seek the help from the docters that diagnosed my APS and try to gain some controls over the symptoms. Regarding domestic issues I would seek help locally with a therapist or charity that have experience with domestic issues and can give me counselling to help deal with issues to get stronger and build self confidence.
Your going thru an awful lot, have you a close friend or family that can help support you?
I agree with previous posts re consulting with your doctor. Accessing disability support in the US can involve a lot of red tape, but it is possible. And sharing your troubles and asking for advice on our forum is a good first step. Great! Next -- Step 2: ask your doctor for advice.
1st, know we are all here for you. I am glad you are here. 2nd, do you have a good dr? Can you write it all out for them? Sometimes when I go in and don’t have things written down, I forget or I just don’t express myself like I should . Write it out like you are taking a 40,000 ft view of your symptoms and life, so you don’t forget things. You can always send your questions and symptoms ahead of time to the dr. Hugs to you and the child in your womb 🙏🏼🙏🏼
You have had some really useful and helpful replies, I hope you can talk to a professional in person and weigh up your options and get some support both medically and emotionally if you feel it would be a good move for your complicated situation. MaryF
You are really going through it as many of us are.
Denial by others about what we may be experiencing medically is a lot to learn to deal with and overcome.
In order to go the disability route , you have to have your medical records in apple pie order. Try to find a compassionate lawyer who would be helpful. If they will accept your case - you may have to wait a long time for a result. And then they might not be successful. But they are paid by the government. I assume you are in the US. You don’t have to incur the cost.
Maybe you could find a therapist who would see you on a pro bono basis And help you process some of this - county or state might be more adept at finding resources for you
US is like Australia-huge! Our site is world wide, so to more tailor a response perhaps say what state you're in and someone there can give you advice. I'm surprised you are able to think in a coherent way with what you have been through! Iknow you'll get good support on here and I wish you all the best.
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