I live on Long Island, NY and suffer from Ehlers-Danlos Syndrome, degenerative disease of my joints and spine, polyneuropathy and other related health issues. I'm a wheelchair user and I'm desperately searching for an accessible place to live. I've had SPD and PTSD/anxiety since early childhood.
I'm currently converting to Orthodox Judaism and I like to write about my experiences on this journey. I also enjoy scrapbooking, reading, coloring, making jewelry and spending time outdoors. I'm a Licensed Esthetician and makeup artist by profession.
I enjoy making new friends and sending snail mail.
I was verbally lied to, so I don’t have proof to show, but there was another neutral party present who confirms the lies by Robert Lindros, the nurse who did my intake.
Here are some key e-mails to explain my last post:
No one has any such record of this. All I have is this e-mail and the property manager application I signed and returned that she refers to here.
Paula lied. Who does this is a human being in danger? It will catch up with her, I’m sure.
My original coordinator, Sally, spoke with Paula as recently as 4/21 and I was told this was definite as well as reassured in person when we met.
My current coordinator was the one to tell me Paula Diane Ryan lied and never submitted anything on my behalf. This was confirmed by Becky who represents the agency Paula left in her wake.
Becky from SILO confirmed my worst nightmare. Several people blatantly lied, but all records were deleted, including the e-mails I had sent Paula, so there’s no record on their end. Sounds fishy.
I hate to have to report this and I hate even more that it’s my reality, but it doesn’t appear I’ll be moving into accessible housing anytime soon. Of course I trust HaShem and hold out hope, but I was told to “make other arrangements” to have somewhere safe to stay.
It’s a long story, but it’s looking bleak. 80% of my belongings are packed. I was assured in writing that this move at the end of May was “definite,” but over the course of this afternoon is all unraveled. People involved are denying what they stated to me very clearly and despite over a dozen calls and a dozen more e-nails, no one is being straight with me.
I’m not sure what to do. Shelters aren’t accessible and have strict 90 day limits, I have no family nearby willing to take me in. I don’t even need somewhere accessible for the time being. I just need a room with a bathroom on the same floor. I have made do crawling for months now. Another fall, and I may end up in nursing care (or worse) after all.
They say they need to secure a SAFE place for me to live, but in the meantime I can remain in what is clearly evidenced as terribly unsafe and even dangerous?! I don’t understand.
I need a few days to try to figure things out. The mind f*cking I’ve been through has me worn down. I’ve never been more desperate and I have nowhere left to turn.
If I didn’t have HaShem, I wouldn’t have made it this far. I have no intention on giving up, but I need a moment to breathe. I’ve been made to feel that I don’t matter and this was truly my last shot. I’m terrified that my only option is a state nursing facility. What kind of life is that? I’ll be just 33 on Saturday and I may never get the chance to live independently. I don’t even know how to express what I’m feeling right now. Betrayed, lied to, unimportant, useless, hopeless, worthless… Do they realize how cruel this all has been?
All I know is I remember very clearly what was said to be and it can be denied, but I know exactly what I was told. I took notes! How would I imagine this up? Not to mention I have it reiterated by this person’s colleague in writing.
I’m so hurt and confused.
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!
Hiya friends! Well, tomorrow I interview and very likely sign with my service coordinator and I should know more about my housing stuff among other things. I’ll definitely keep you in the loop. That said, would anyone like notifications for my new posts or a twice a month newsletter (no spam)? I know a lot of you don’t have WordPress or Bloglovin (ZebraCourage), so in our busy lives, it’s easier to click through an e-mail than remember to visit my blog regularly. Please tell me what you think! I really appreciate your honest input.
I’ve shared some of my artwork, crafting and hobbies, and received quite a lot of feedback on those posts. I plan to share more of this and review art and crafts products and share project ideas. My question to you is: would you prefer a separate blog for these posts or a series within this blog? My pro/con list is even, so I’d really appreciate hearing what you prefer. If it is indeed separate, I will share some inspirational thoughts and experiences as well. As you know, I don’t hide my faith, but I respect the fact that most of you are not reading my posts to hear about that sort of thing. I’d prefer not to make anyone feel like I’m preaching or anything like that. As both a religious abuse survivor and a Jew by choice, I don’t believe in trying to convert people, but I do like to express things through my beliefs.
And I have a third question: Would you be interested in video blogs? I would post the vlogs here, probably via YouTube and it would only be occaisional. Does this appeal to you? What would you like me to share via video if at all?
I look forward to your feedback and welcome your opinions!
My interview for the NHTD waiver went amazingly well!! Essentially, they must determine what level of care you require, and if you qualify, they will get the services you require to live independently. This can include assistance with accessible housing, if necessary. Oh, it’s necessary! The RN who I met with said, in no uncertain terms, that I qualify. I thought I would, but I had no idea what this would actually mean for me.
Well, it means EVERYTHING!In fact, it was determined my need for suitable housing is urgent, so that’s actually the first thing they are addressing. This isn’t typical. It is usually something they work on later in the process for the majority of people. I’ve signed some documents related to housing and about a week from now, I’ll actually get word of where I’ll be moving to! All I really know is that it will be somewhere in Suffolk. I’m holding back my celebrating a bit, because, until I see the lease filled out in front of me and have an address, it’s not definite. I have their word, but I need it set in stone before I feel confident enough to announce I have a place to live.
In the meantime, I have had the job of interviewing and hiring a service coordinator that I’ll work with directly to obtain things like a home health aide and to plan my first year of independent, accessible living. I’m in the midst of that process now. My next step is to meet with my potentional coordinator. My first meeting is Tuesday and everyone at this particular agency seems friendly and wanting to help. I was told to interview a few, but I didn’t even feel confident in moving forward with any of the other agencies I called so far.
I was told to start packing, so that’s the other big thing keeping me busy. How does one who throws things out and organizes and sorts for fun accumulate so much stuff? My friends have been helpful with tips and I’ve accomplished a lot, but have a lot more to go. I’ve made lists of essential items I can pick up cheap at particular stores and even created an Ikea gift registry after I realized I’ll need a new linens, my own towels, kitchen items and just about everything needed for a household of one. I like making and working from lists, so I’m trying not to worry about paying for it all. Instead, I’ve focused on how many of these items I can get from Dollar Tree and thrifting. I love a good deal!
I’m excited, hopeful, nervous, overwhelmed, overjoyed and still waiting for someone to pinch me. I didn’t see this coming, but I’m really happy it is! Thank you all for the support and prayers. I’ll be sure to let you know as soon as I get confirmation!
I get a lot of friends asking how I’m doing. My response for months has been “I’m hanging in” accompanied by a small smile most of the time. A neighbor I hadn’t seen in over a decade commented on my positive attitude and way of thinking. I thanked them, but honestly, I don’t know any other way to be. I can’t drag others down with my troubles. Even my best friend will attest to me asking permission to be blunt. I’m not a pessimistic person, but surely no optimist!
I love the truth. Even if it stings me at first. Another thing I tend to say a lot is “I make a point to share my positive opinions and if nothing else, you’ll get the truth from me.” I think the key is tact. I don’t like conflict or having my words twisted or taken the wrong way. I hate to see a friendship end over miscommunication. I think honesty is always best, you just have to consider all possible reactions and approach touchy subjects in a way that particular person will best receive it. This is much easier said than done!
But I digress. I guess I was just thinking of all the bad advice, broken promises and and disappointment I’ve been crashing into over the past 2 years. I had a meeting with my housing advocate and the news is mostly as scant and bleak as it was before, except for one huge chance I have. I’ve had my hope dashed and I’ve fallen apart, so I’m trying to be cautiously optimistic, but this is it. It will work out.
After an interview I have this coming Thursday, I will have a better idea of this plan can even work. I have a chance at a place only about 30 minutes from where I live now which is completely wheelchair friendly! I don’t believe in coincidence and there is a lot falling into place just in time. I have to believe this is all meant to be and will indeed work out as planned. So much for caution, I am getting this home! Baruch HaShem!
I’m sharing this, which is reposted from my instagram account, but have included all the photos. Please feel free to repost wherever you please and link me back if you can!
Hey, @ups, will you be paying to have my wheelchair’s front wheels realigned after my attendant hat to boost me over the curb? I’m seriously asking. When the driver (pictured) showed up, we said something. He blocked the entire curb cut and parked an an handicapped unloading zone that was clearly marked. He grinned and said “sorry,” chuckled then continued to open and unload the truck, never thinking to move. I couldn’t even transfer into the car properly, so would you like my orthopedist bills as well? This is disgraceful and I never expected such behavior from UPS. This changed my opinion. I told him I was taking his photo, he responded by continuing to unload packages and smiling at me. You should be ashamed. *all full photos will be posted in my blog shortly for those interested. I can be contacted directly at: —— All correspondence regarding this should be sent by e-mail. I will not respond via instagram. #disabledlivesmattertoo #disalkedlivesmatter #ups #nysdot #wheelchairproblems #upshatescripples #upsfail #longisland #nassaucounty #townofoysterbay #nassaupd #news12 #southoysterbayrd #hicksville