Becia Posted October 18, 2014 Report Share Posted October 18, 2014 So I've been home at my apartment for going on two weeks now. While I've still struggled with issues with this flare, I've done my best to move forward, figure out things I can/cannot do, and just go from there. This week, the physical and occupational therapists came out and did their evaluations, and started my treatment here.My orthopod has diagnosed my hips at the current time while we are doing genetic testing, as possible EDS and hip dysplasia. The physical therapist who did my evaluation is awesome!!! For once, I have a therapist not trying to put me in harms way by forcing me to stand longer than I can tolerate without hitting the ground, and he's familiar with POTS because his daughter has this diagnosis too! We talked about the difference in our cases, and today he came back and we started working in a regimen for me. I'm having a horrible day today, bad enough I needed two liters via IV this am to be able to sit up halfway straight. He could tell this wasn't a good day, and watching my bp go through its roller coaster high then dropping, it was confirmed. he knew I spent a good portion of last night on the floor, and didn't push me like the others have, who truly saw what my joints and body were doing in reaction to everything, and hasn't downed me and called me lazy or thinks I'm not trying hard enough. He didn't even get phased when I had an out while he was here, which is rare (people usually freak). This dude is awesome,just plain and simple.The occupational therapist was just as cool. My arms are fairly strong because I use them to push myself in my chair (alternating using my legs and arms kinda makes me feel like I'm working out again), but my hand strength is not that great, which was a bit worrisome. I didn't know if I would qualify for their assistance, but I did, for energy conservation education, and assistive device help. As much as it hurt for me to hear it, she (as well as many others in my life) thinks an electric scooter or chair of some sort will be needed, sooner rather than later, so I get to start that activity soon. And lastly, I found out yesterday an apartment opened up at the building I truly wanted to be at! While it's not handicapped accessible, it may work, and if I need an accessible one at a later time, I should be able to transfer apts to one that is. This apt puts me down the block from a store, across the street from a pharmacy, two blocks from my church and three blocks from the library, and less than a block from an amazing ice cream shop (because sometimes I need raspberry chip in a sugar cone, or I'm just not a happy person, lol). I'm smack dab in the middle of a sleepy downtown of a small town, in a building of disabled people and people who are 62 and older. Sounds crazy, but im so excited about this. I haven't completely unpacked, so moving will be easy once we just load up the furniture.The fates are just lining up in a row, for once since my diagnosis. Even my wheelchair situation is improving: the one they send me has already broke, they are replacing it with a different brand, and even making it the smaller size I've wanted for comfort, and will ensure that I can get in the doorways of the new apartment. So while this experiment has been very hard, and I'm still mentally struggling with finding that fine line we all tiptoe on, I feel like I'm getting outfitted better for it. Just trying to keep plugging, stay off the floor, keep my joints in place, and not go stir crazy being in the house all the time. Quote Link to comment Share on other sites More sharing options...
Katybug Posted October 18, 2014 Report Share Posted October 18, 2014 I'm so happy for you and proud of you! You really sound like you see some light in the tunnel finally. :-) Keep up the good work! (And, yes, a PT that gets it is worth their weight in gold!) Quote Link to comment Share on other sites More sharing options...
angelloz Posted October 18, 2014 Report Share Posted October 18, 2014 So happy that things are turning for the better! You deserve it! Quote Link to comment Share on other sites More sharing options...
Becia Posted October 18, 2014 Author Report Share Posted October 18, 2014 Slowly but surely. im just ready to get it over with and be settled. I feel like when they moved my fish over, that was a big moment for me and kinda signaled that I am home. Ready to have that moment again now. I still am in the process of procuring a med alert device. I think I have which one I want, but just need to come up with the funds. Keep thinking and praying my disability comes around at some point, but I'm still a year away according to the lawyer. Just trying to patiently wait, and not end up sick or hurt. Been a hard couple days with everything going on, but trying to slow down and just go "I got this". Quote Link to comment Share on other sites More sharing options...
corina Posted October 18, 2014 Report Share Posted October 18, 2014 Good for you Becia you're working so hard on getting what you need. Hope your move will go smoothly an wish you lots of happiness in your new appartment! Quote Link to comment Share on other sites More sharing options...
Becia Posted October 21, 2014 Author Report Share Posted October 21, 2014 Well, if I could stand, I'd be dancing a jig. If I could just sit up, I'd do a little chair dancing even.... But I am so exhausted. But I am pretty much moved to my new place! It happened way faster than I expected, but today, when I got my keys and did my inspection, I went ahead and moved a few boxes of things that I wasn't using, and one thing led to another, we ended up with another truck, two friends to help me and my father...We moved my furniture (couch, bed, table and chairs, and rocking chair), my fish tank (my babies were not happy with me, lol), and my Kitchenaid mixer (we were so not leaving that out in the open for theft, I paid too much for it). We moved all but a few boxes from the bathroom, and my kitchen. I grabbed a banana, a box of Twinkies and a couple bottles of water to tide me over for breakfast tomorrow. I have therapy tomorrow, but hoping to get the rest if that packed up, at least moved if not put up, and my keys turned over.This apartment is absolutely amazing. I have an amazing view of downtown, and these huge windows. Need to get the correct curtains now, but I'm just floored. The bathroom is not wheelchair ready at all, but it's tiny enough, and I can get my chair into the doorway, that there is very little space where I am not near something to grab and sit. There are wctually emergency call buttons in the bedroom and the bathroom, that if there is an issue and I need assistance, pull the cord, and they are notified out in the hall and office, and they can get help to me. That is such a big relief, although I will still be purchasing a med alert system, as well as getting a motorized scooter. There's a gorgeous courtyard to enjoy outside, and there's even a resident groundhog! Apparently it Iikes apples, and will eat from your hand, Also, a TV room to enjoy a change of scenery, and they have events for the residents to enjoy too. This is like the nursing home, but much more independent too.I feel home, although I am so triggered and exhausted right now. My pain is extremely high as I dislocated my hip earlier getting in and out of the truck, and from overuse pulling myself. I managed to get to bed safely, and am enjoying a movie on my computer until I get everything else set up. Gonna be spending a good amount of time with my feet up, an IV running, and banana... But I feel Ike I can relax now, I feel truly home. I feel safer.That all said, I don't want to move in a POTS flare again, lol. I think I'm good now, lol. Quote Link to comment Share on other sites More sharing options...
Becia Posted October 21, 2014 Author Report Share Posted October 21, 2014 And for being located in downtime, so far not really noisy, the police siren earlier kinda unnerved me (only three blocks from that), but that is all. Even the lights aren't bad in the windows, although I will be getting new curtains soon. Quote Link to comment Share on other sites More sharing options...
Raisin Posted October 21, 2014 Report Share Posted October 21, 2014 Good for you Becia! You have weathered the storm and it seems there is a rainbow! Quote Link to comment Share on other sites More sharing options...
Becia Posted October 30, 2014 Author Report Share Posted October 30, 2014 Today was a two week follow up with my gp and it went amazingly well. He is most definitely trying to keep me as independent and safe as possible, so he never balked at me needing a letter to put me in line for a wheelchair accessible apartment, and today I got the greatest news I've had in a bit... He is gonna try to get me a motorized scooter for use outside the apartment, like for running to church two blocks away, the library, grocery store down the road, etc. he agrees that my independence is key to my mental health now, and maybe this would be a good thing to at least try, it would def make it easier to get to a few things I want to do, like go to the library, church, there's a place with some classes/social groups right down the block. I went Monday, and didn't realize how hard it would be to get back home, it made me extremely sick and triggered doing so, and it wasn't that far. Even better, my church is awesome, because one of the ministers was visiting one of our home bound members, and she is selling her Jazzy scooter as her place is too small to use it, and when she does go out, she requires more assistance, so she can't use it then either. While my claim is being processed, she is selling this one for a very good price for very good condition (we checked it out tonight, and it's spectacular, lol... Even the battery is really good, which was the main thing I was worried about), so I have a scooter I can use in the meantime, to get used to it, and know what I want mine to be like since it will be customized (doctor mentioned wanting it to recline and elevate my feet as well). Bad news is I still need fluids every other day, so we are continuing that process. It's not really a bad thing, I just kinda hoped to reduce my intake that way, but on the days we've done trials of trying to maintain everything orally, I struggle a lot, and while my PICC line is a bit temperamental but functional, he wants me to get all the fluids I can that way, because it makes such a difference to my living abilities. He also is working with me on pain management, as my hips are still extremely sensitive and the wrong move makes them dislocate. I hated asking for something stronger than just maxing out on Tylenol, but it's nice to know I have something on hand if it gets too uncontrollable, instead of having to get a ride to the ER for something that's pretty common with me now.Slowly getting adjusted and settled here. I do love my new place, and I've already used the alarms for help. Being so close in living area to my friends, church and the such has already eased my mind a lot. Already got a lot of old me hitting on me in the lobby, but I'm close to everything I need, lol. Never a dull moment around here. Quote Link to comment Share on other sites More sharing options...
looneymom Posted October 31, 2014 Report Share Posted October 31, 2014 So happy for you Becia! Glad things are going better for you. Quote Link to comment Share on other sites More sharing options...
Becia Posted November 3, 2014 Author Report Share Posted November 3, 2014 Thanks yall brought the temporary scooter home yesterday, and while it's very temperamental (kept giving error codes while loading and unloading, so a friend literally pushed the thing from the back entrance to my apartment, not an easy feat), I'm hopeful it will work. I charged it last night, and had to get up at one point to try and move it myself because the charger is really loud and it was keeping me awake. I didn't get an error code or anything, so maybe it was just low on juice. Hoping to trust myself enough with it to go down to the bank today and pay my rent and withdraw cash before physical therapy.I'm currently a bit terrified of this thing, because in my head I'm equating it to driving, and I can't do that yet. Some days I think I can, some days it's like nope! I have a fear of getting somewhere while feeling great, but then not feeling great, and I'm stuck where I'm at. Trying to work on my judgement and decision making, where if I'm too tired to go take my trash out down the hall, I shouldn't be "driving". Lots of new stuff happening in my world, no wonder I've been exhausted, lol. Quote Link to comment Share on other sites More sharing options...
YolaInBlue Posted November 3, 2014 Report Share Posted November 3, 2014 I hope everything continues to go well for you Quote Link to comment Share on other sites More sharing options...
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