Packing, Planning & Pesach

Chag Pesach Sameach (a Happy Passover) to all who observe this special time! Unfortunately, I was too ill to attend Seder, but I’ve using this time to thank G-d for so many blessings and celebrating what’s to come. I have a lot to be thankful for.

I have been told I definitely will have an apartment at the end of May! I still don’t know where exactly, but somewhere within Suffolk County. I got this information thanks to the service coordinator I signed on with. Sally is very nice and I think working with her will be tremendously helpful. I’ll be meeting with her again this or next week. There’s so much to plan, arrange and prepare for.

I’ve been packing my belongings bit by bit and purchased some basic househd items. (I’ve learned I absolutely abhor packing to move.) I still need so much more, but certain things will have to wait for money to be available. I need major things, particularly a proper bed/mattress. What I sleep on now is 16 years old and literally causes me pain. I’ll also need all of the other basic furnishings. Sally told me they will assist me with some of that, but I don’t yet know how that works and what they’ll be willing to pay for. It’s difficult to plan with so little information!

I will be evaluated for certain health needs and set up with things like occupational therapy, home aides, adaptive counseling and even social activities of classes. They expect me to find all new doctors within the county, but with Ehlers-Danlos Syndrome being so rare, decent doctors are hard to find. Most of the doctors I’ve seen for years weren’t familiar with it and it has taken years to get them informed and on the same page with me. On top of that, I obviously do not trust medical professionals given past sexual assault. My therapist has advised me to insist that I’m always accompanied by someone to, from and during medical visits. I think this is the only way I’ll be able to seek medical care. It will still be very upsetting and anxiety producing, but I’ll have someone there to help me through and keep me safe.

I am beyond excited and it’s hard to believe that this crisis of 2+ years will be over in the near future. I’m also overwhelmed. This is a huge change. A wonderful change, but I feel uneasy not knowing what to expect.

This blog will continue on just as my journey will. I’m curious to see the changes within me as I live in a safe space of my own. I can’t wait to share the next stage in my life with you all!


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