Slow motion

Time feels like its passing slowly lately, yet my physical condition continues to make dramatic downturns. I can’t seem to get my anemia under control, so I’ve been sleeping quite a bit. I feel weak and my heart is fluttering more than usual. I am extremely behind in reading the many blogs I follow, but I’m beginning to catch up. I do apologize for my absence!

I had a wonderful visit with my “other parents” who came up from Philly to spend the weekend with me. We stayed at a Hilton not far from my current home and it was super to be in an accessible environment! The best part, of course, was spending time with my family. None of us was feeling all that great, but we got to speak face to face which was long overdue and very helpful. I’m very blessed that HaShem gave me these two.


It was time away I really needed, too. The timing was perfect. I’m getting their help with possibly relocating to Pennsylvania. The waitlists there aren’t quite as long and I have other relatives in and around Philadelphia, so it could be the right place. I’m moving forward on all fronts and trusting I’ll end up where I’m meant to. Please keep me in your prayers in finding a home.

Another of my physicians has recommended a service dog. I’m really excited about this idea. I was hesitant before, but now I think it’s a fantastic solution for help with both my physical impairment as well as PTSD. I a little sad that I keep receiving great recommendations but can’t move forward without a home first! I’ve had a custom power wheelchair for 2 years now and I can’t use it. I’m eligible to a home health aide and that would also require I be in my own place. The list goes on. Time keeps passing. I’ve continued to push forward and follow even the most remote possibilities. I can’t take “no” for an answer and I must push ahead despite repeated disappointment.

The latest is my left shoulder is dislocated and although, with rest, I’ve managed to regain some motion, I’m in constant pain. I also have been having twitches and tremor that is more bothersome. I’m not sure what that comes from, but it makes me even less steady on my feet. All I want to do today is deliver a Purim basket to my neighbor and spend some time outside, but I’m not sure I can even scoot down the stairs today. I’m going to try.

With that said, Purim Sameach!

My flashy Purim look 😉

Hopelessly overwhelmed?

Things aren’t quite as rosey as I made them sound in my last post, but thanks to your encouraging comments, I’m fighting just as hard. I just got a little ahead of myself, I suppose

I’ve been kicking my own butt to get things done and considering the chronic sinus infection interrupting my sleep and making me grumpy, I’ve accomplished a lot. Then, a day like today pops up. I have 4 missed calls from the nurse who is handling a waiver interview for me, I have a pile of paperwork to redo for a housing application and after 5 pages, I feel lost and worried I messed up,  but there’s no one to reach now. The only medication that allows me to speak and breathe is one I shouldn’t take because of my heart and the persistent tachycardia that has me at risk for stroke! Yesterday was my first trip to a store with my dad pushing my chair and the frustration and extra effort I’ve been trying to manage for several years all on my own, is stuff that makes him intolerable to be around. I can’t help but feel down. I was reminding myself to stay cautiously optimistic regarding housing, but at this moment, I have tears in my eyes and I feel stuck in a futile battle.

I’m taking a break to write this, but also to remind myself that I do need to keep working, and most of all, reach out to G-d when I’m feeling so discouraged. I put so much pressure on myself. At times I’m sure it’s me who is the problem. Something I’m doing is preventing me from getting what I so desperately need. This is hugely counterproductive, but really hard to shake when so much of this journey is paved with failure. When things didn’t work out for me as a child, this was the message I was sent: I did something wrong or didn’t do enough and this outcome was deserved. Of course I know this was never true, but I’m very lost in this process and because of my own schema, I don’t even know how to yell for help. I feel like I’m drowning and I’m afraid to grab someone’s hand because there could be strings attached, or they could give me bad advice, or they might just really care, but not enough to do anything about it.

I want off the hopelessness rollercoaster. I want to learn to ask for help when I’m unsure of something. I can’t last much longer where I am living right now. I crawl to get around, I can’t bathe properly, I can’t do laundry, I’m scared of even leaving this jail cell of a room because of what I encounter, and I endure physical injuries on a daily basis. I’ve used an entire large bottle of hydrogen peroxide just this week from a the cuts, scratches and abrasions. I roll over in bed and a line of bruises send searing pain up my spine. This house may really kill me before I can get out!

Please pray for me. Pray I listen more closely to G-d and stop the self-blame. I can’t help but feel less than human in this environment (anyone would), but I can change how I view myself in other ways and I can have hope. I’ve taken a huge step forward and this time, I won’t question my choice. I will give it all my effort and rekindle the hope that has been torn down over and over.

I have now found out the earliest chance at an apartment becoming available is about 2 years away. This includes apartments that are independent from the government agencies. I’m filling out every application for Long Island housing, but have continued to branch out on my own to upstate New York and other states.

I have to get back to filling out forms and waiting for phone calls because I will be out of here soon. If it means another shelter, I will do it.

Wheels in motion

I didn’t mean for the title to refer to two great things. Happy accident!

I have finally reached an organization that wishes to assist me. They had me speak with three different departments which could provide assistance to me in the areas of housing, home care aide and case management. This is huge! Nothing is going to happen overnight, but they feel the urgency and after just speaking with them yesterday, I’ve received forms to start on,  numbers to call and a promise for a check in once they have some of the initial steps done. I’ve already followed up in all the ways they told me to and I feel enouragred. Things are looking up.

To top it off, my “other parents” who live in Philadelphia are coming up to Long Island in a few weeks to stay for three days. I’ve missed them so very much,  but they have plans for work. To get me a home and find the things I need that I have been hitting dead ends on. They booked a hotel suite and I’ll stay with them to optimize our time together. It means the world to me to have people, of no official relation to me care so much. They truly love me and I them. I say this to my dearest friends all the time,  but G-d truly did provide for me a family, just not in the conventional sense.

I haven’t felt this confident that I’d have a safe and accessible home before. I’m staying cautiously optimistic because looking back, I’ve had other things seem promising just to have them fall through or even set me back!  The difference now is that I have the right people with the right resources and the best of intentions all in one. If Marc, Rhonda or Susan read this, I know you told me not to thank you yet, but I have to express my appreciation. You have no idea what I’ve been through up until now and I finally feel hopeful.

It has been over 2 years in the making, but the journey has just begun. It can’t be coincidence that I’ve been receiving a lot of guidance from HaShem in the past few weeks. I feel a sense of peace I’ve never had before. I also felt compelled to cover my hair all the time,  not just for prayer, shabbat, etc. You know how I mentioned I had a direct hit to my self-worth a little while back? It’s gone. With the approval of a few trusted rabbis, I now wear mitpachat/tichel and I’ve never felt more connected through a mitzvah, so comfortable and secure and just more like myself. I know it’s not for everyone, but I’m embracing it fully and it feels natural to me. It’s admittedly practical as well, because I’ve been experiencing hair loss due to anemia.

It's me! 2/26/16

It has been a time of big change and for the first time in a long time, I’m excited for the future!

Wheelchair: Day 1

Well, I took the advice of several of my readers here (thanks again!) and Monday was my first official day on wheels! On Friday, I slithered downstairs and rolled my manual wheelchair into plain sight and then by the door on Monday. I said nothing. My dad took the enormous hint and loaded my chair into the car. No groaning, no comments. Success!

We arrived at my therapist’s office with time to spare, so I showed him how to attach the footrests and seat. He pushed me the whole way there. We encountered some obstacles, but I stayed calm and he took my solutions extremely well. For example, the floor dips down when you cross the saddle into the elevator, so I suggested he back up and roll me in tipped back. He even expressed disgust at how the jerk who runs that office has made it impossible for anyone using an assistive device to get into the waiting room. My dad did a little, um, feng shui with the furniture. Problem solved.

Not ADA compliant? We'll fix that for you.

On our way home he needed to get some items and I suggested a store that would have them. It also happens to be the one store I’ve wanted to poke around in for a few weeks now. I suppose my dad is used to me having to stay behind and wait in the car because walking with my rollator has been awful for a few months now. I was left in the car, but decided not to say anything. Let’s take one step at a time and ease my friends and family into this! (I mean that sincerely, they are adjusting a bit, too). He did ask if there’s anything he could get for me which was very much appreciated.

The big issue that my friends often forget when making suggestions is that I CANNOT PROPEL MYSELF AND NEED SOMEONE TO PUSH ME IN MY WHEELCHAIR. My shoulders are badly injured and even if they werent, having EDS means I have to protect my fragile joints. I get it, though. Most people in a manual chair can get around on their own. However, this is just my back up chair and where I’m living now, my power chair cannot be moved in and out of the house. In fact, I will have to hire the company that supplied it to transport it to my future home.

I’m not being critical of my friends. They’re just trying to help with suggestions, but I feel very uncomfortable announcing it or “breaking the news.” I fear any plans I might make will be suddenly canceled. I do fear rejection. I feel vulnerable in this wheelchair. At the same time, I just got a taste of the freedom it provides me. I could actually go shopping without being in excruciating pain or injuring myself within 10 minutes. I always put on a brave face and pushed too hard because I just wanted so badly to be like anyone else my age, but without mobility impairment. I learned something big, though. As long as they understand that pushing the chair is part of the package, we can do a lot more than we have been!

I am looking for an aide for shopping trips, errands and to travel with me via AbleRide or their own transportation to get to appointments and synagogue and stuff like that. If you know an agency that serves Nassau County, please let me know! I’d also love to find some sort of social or activity group with other physically impaired adults, but I’m coming up with nothing.

All in all, I’m off to a pretty good start. My legs still work, just not well. My brain is back in action. And most of all, I appreciate the friends who are sticking by me! I’ve become so isolated, but this is a new beginning and I’d love for you all to come along!

I just can’t

My left hip dislocated Friday and once it made it back into place, it wasn’t right. It still isn’t. In fact, just shifting weight to that leg makes me want to scream! I have 3 appointments this week, but I’m praying the pain will resolve. I haven’t canceled anything as of yet, but notified my therapist of my situation. On a normal day using my walker is quite painful, but I suck it up and do what I have to do. On a normal day, my unsteadiness mixed with pain makes me fear toppling over. I’m definitely not taking this risk. I basically hop to the bathroom and I will not do that in public!

This throws a major wrench in my plans. I was so happy to have completed many of the tasks I had on my list. I was confident I’d complete the rest by mid week. I’ll have to allow a little more time. At least I’m making my best effort.

I don’t like being pushed in my wheelchair, but what I dislike more is missing out on life. I’m not embarrassed of my disability. That’s the only conclusion I can come to. The people who would have to attend to me are embarrassed. I’d love to be in my power chair, getting around on my own, but my current living  situation does not allow me to do so. I’ve tried asking for assistance, but it has fallen on deaf ears and now just thinking about having to bring it up to my family makes me incredibly anxious. I wish for nothing more than to live safely and independently.

I can’t take being ignored or risk being treated like a burden. That hurts most of all.

WordPress, I’ve missed thee!

I don’t have a real post for you all at the moment, but I had to let you all know, I’m feeling remarkably better today! No “episodes” in well over 24 hours. I’m still a little nauseated at times and super tired, but I can’t really complain. All things being relative, this is a piece of cake! Thank you for all the love!

I really wanted you all to know I’ve been falling behind in most of your blogs (hey, I read a solid 100+ on a regular basis!). I’ve also missed comments because the notifications go back too far and I’ve even read many of thrm, but just wasn’t capable of responding at that time. since I’m starting to feel better, I’ll be catching up, especially on comments over the coming weekend.

I’ve miss my wonderful WordPress blogger buddies, but I’m back!

General update

I’ve written a post explaining why I left the DV safe house, but have yet to edit it. I hope to post it soon. It fills in a lot of gaps. I’ve been managing poorly in the self-care department, and my Internet presence has been limited as a result.

Unfortunately, the akathisia or whatever it is I’ve experienced recently has made a few comebacks since. Friday morning I was in a pool of my own tears after battling the symptoms all night. I was hysterical. I just wanted relief. I really just want to know what it is and possibly a way to make it not happen or at least stop once it does. Stress increases the likelihood of an episode which I can feel coming on. My neck gets stiff, I feel agitated, my muscles twitch… It’s not pleasant. In fact it becomes painful which only feeds the stress and agitation and panic. The medication I was orginally given still helps, but boy does it cause some seriously blurred vision! It also messes up my sleep pattern which is really inconvenient, but as long as it helps the worst of the symptoms, I won’t complain! I’m following up with a rheumatologist as soon as they can fit me in. I don’t agree with the theory of a Lupus flare, but I do want someone to figure it out. At its worst I told my dad I rather fall feet first into a woodchipper than experience this again. I’m also afraid it will come on suddenly when I’m out in public or completely alone.

In great news, my brain is still holding strong! I’m becoming less concerned that I’ll experience cognitive impairment like that again. I agree with my doctor who thought it could just be a virus passing through. That explanation fits. Having Ehlers-Danlos Syndrome, I can’t avoid wondering if the doctors are missing something right in front of them. At least this time I recovered and I’m fairly satisfied it won’t return.

Leaving this on a positive note, thanks again for all your comments! I’m really happy to have as many people as I do reading and so many of you give great advice, share your own experience or offer prayer and I couldn’t be more grateful.