So, yeah… I wasn’t planning on being away for that long; I swear it was just a couple of days ago when I was last here! Then, after I got this strong urge to write, I find that this community, Xanga, isn’t going to be around for much longer. AGH!! NO!! *sigh* While I told myself I’d find another home to share my journey before I did a last hoorah, I’ve just got a few things that I just can’t keep to myself anymore. I need my outlet! I am trying to find a new home to share my journey with you, and once I get it, I will make sure to let you know how it goes and where to find me if you want to see me again.
Okay… So a couple of things have happened since I was last here. I had my Social Security hearing. London has set a deadline of August for me to be over there with him. And, yesterday, I had the hardest day ever: I had to call my brother to come pick me up at the mall because I couldn’t walk…
So, first order of business-my hearing. The one chance I have at trying to explain my side of my disability and how it affects my life, I choke. Yeah, just outright, couldn’t think, couldn’t speak, choke. I blew it. The beginning of the hearing moved along rather nicely, nicer than what I was expecting. Even the vocational rehab expert was right on the money (minus the jobs that she said I should be able to do) with how hard it really is for me to work. My attorney asked me some questions; more for just clarification, but also a little to help see things on my side of the fence. Then the judge asked if there was anything I wanted to say… I politely said that I didn’t, other than “it sucks to be my age and have to deal with everything I do all the time.” In all fairness, though, I had been sitting for around 2 hours by this time and my meds were kicking in with the cloudy mind. Add to lack of sleep and my nerves, I thought it best to just keep quiet. Sometimes I can just ramble on and on about nothing, but y’all wouldn’t know a thing about that, would you?
The thing that sucks is that I had my chance to talk about my struggles every day, between the pain and spasms and how it all drains me. It was a little disappointing, though I feel like at some later time I will be able to actually tell my story. Especially how on paper it may not look there’s a single thing wrong with me, yet, look at me and tell me I don’t. (And remember to scan in the scene of me holding my cane, because everyone my age wants to use one…) I’m hoping that my last impression was enough to speak the words I just couldn’t find. I walked into the hearing decently enough, but I definitely walked differently out. With me sitting for about 45 minutes before the hearing, and then sitting for the 30-ish minutes for the hearing, um, yeah… I had more of a limp and it was harder for me to walk out of the room. Should hear something about getting my SS around the end of the summer. Yay for more waiting! *sigh*
Now, London… Wow. After he visited in April, we decided that we really want to give this the true go it needs to go the distance. (Heh, literally and figuratively! Bet I couldn’t do that again even if I tried!) Since I have no life, I said that I wouldn’t mind doing the relocating. I fell in love with England the first time I was there; how could I pass up the opportunity to go again? And while I have no qualms about moving, I have so much to do to get there! Not so worried about myself, but Leo is a different story… It won’t really take much to get him ready to cross the Pond; I just gotta somehow get the funds to prepare him. (And while I am grateful for my 10% rating with the VA, $129 doesn’t go too far…) Then there’s the airline fun; trying to find a comfortable flight that will accommodate both Leo and me. Leo is pretty good on car trips, as long as he can see me and I can pet him, he’s okay. He’s so skiddish around anyone that isn’t me, there is no way that he’d survive a plane ride in the cargo hold! Plus, since I know how he is, there’s no way I’d survive him being so far away from me. (Okay, so I’ve got a little separation anxiety too. Guess that’s part of the territory; I consider Leo a therapy cat. He’s helped me become more comfortable in myself, even if he doesn’t go out and about with me. He helps me calm down before and after I run errands or what have you. And he does not let me out of his sight on my really bad days…) So I’m going to have an adventure before the adventure! Could be some interesting times ahead in the next couple of months…
And, lastly: yesterday. This will be the hardest part of this blog for me to write. Over the last few months, I feel like my independence is being taken from me. I’ve started walking in my house with my cane full time now. I’ve been extremely concerned that this day would come to pass, as I started walking with my cane outside of my apartment/house/home all the time in the summer of 2010. I just thought I’d have a little while before I did. Now, the one place that I thought I could be free, could have a safe haven, has seemed to become part of my prison. I’ve had to up my frequency of meds because of the pain and spasms attacking me. I feel weak and unable to fight this battle. I don’t know why I’m in this stage of life, why I’m here having to go through everything I do, all the time. I keep hearing a small whisper, “This is not your story.” (If this isn’t my story, then, could You tell me whose story it is so I can talk to them??) It’s so hard to walk any more. I have to time myself when I leave the house! Anything over 2 hours and it’s game over. It’s gotten so bad that I don’t like going out unless someone is with me. Yesterday was a prime example of why…
So, yesterday… I had an appointment at the VA at 10. No biggie. After my appointment, I headed to the T-mobile store at the mall to pay for service this month. (My mom and the Boots Lady (my 91-years-young grandma) wanted to give me something good for my birthday; they decided to help me out a little by paying for a month of service. Happy Early Birthday to me!!
) Even with me walking slowly, it took me a few minutes to get over to the store. Then I had this brilliant idea that since I was at the mall, I’d duck into a few stores to price check a few things. Not too bad. Went to the car after wondering around for about an hour or so, and started feeling the spasms I ignored while I was looking around. (I did have a decent size one while I was in the dressing room trying on some jeans, but as I was on my way out the door, I pressed on.) I sat down in the car and decided it wasn’t a good idea for me to drive, what with the pain radiating everywhere and the small spasms starting to take over.
Looked at my phone so I could call someone to pick me up and saw I didn’t have a signal. I went without my phone last month b/c I just didn’t have the cash to do so. In an effort to remind myself of this, I turned the phone’s airplane mode on so I wouldn’t get charged anything. (I’m old school; I remember when you actually had to pay for every minute you used, roaming and otherwise!) I tried all the normal stuff to get back on the cell network. Still couldn’t get a signal. I did the only thing I thought to do; I went back to the T-mobile store to see what the issue was. Got to the store, where everyone and their dog deciding that this was a good time to go to the T-mobile store. I started to stand in line and after a couple of minutes, I had one helluva spasm that almost knocked me to the ground. (Thank goodness for the wall that was behind me!) Saw a bench not that far from the store and thought I should just sit there for a few minutes until a lull. Then it hit me; maybe I need to restart my phone! Yep, that did it…
Texted my brother and he was there in about 15 minutes from my SOS. I think it scared him a little that I had to SOS and the state that he found me in… It scared me. As the years roll on, the more I feel like my independence slipping from me. Even just 5 years ago, I was able to walk freely, with the cane use down to hardly if ever needed. I was living on my own. I was attempting to work and to do some night school. I had more mobility and agility to do what I wanted, when I wanted. Sure, there were days like I experience now, but they were so far from one another that I could live a semi-life. Now, I have issues just walking from my room to the bathroom about 10-15 feet from one another. AND I have to use a cane to go that distance!
I try my damnedest to stay positive; I don’t like being around Debbie Downer, so I try not to be her. It’s getting harder and harder for me, though. I cocoon myself in my room so that no one has to see how bad I really am. My family is always poking fun of me because of it too. They always have; I was worse in high school! It was easy when I was able to live on my own; I could really hide it and no one outside of my apartment would know the difference. Hard living at home with the Momma; sometimes I see how it kills her to watch me. I try hard to not be a burden to anyone and I try to do everything myself. My fam gets upset when I do some things (like carrying a plate of food and/or glass back to my room, with me using the cane) by myself. It’s nothing against them; it’s just me trying to keep what little independence I have left. It’s just getting so hard the past couple of months…
Hrm… Well, now that I have that vent out of the way, I believe I may actually have some good rest tonight. Thank you so much for letting me vent!!
Until next time… CIAO!
(<–See; DORK!)
