Getting over the hump!

Forgive me if this is now update overkill but I figure the more informed I keep you, the smoother my transition back to Apartment Awesome. Two big things:

1. Had my post-op appointment with my leg surgeon yesterday. He took out the last few stitches and declared the healing of my surgical sites "a wonder"... Follow up X-ray was also great, no shifting of the pins and the promising presence of ossification- however he did say the bone regeneration did appear to be a bit slow but that's exactly what he had been expecting.

2. My long-awaited custom power chair arrives this afternoon, it's being delivered to me here at CareOne. I'm hoping this 'superchair' will afford me more time out of bed to get around and stretch everything, work on arm exercises on my own time in their gym. The PT/OT have already remarked my arms, while pretty strong to begin with, are showing signs of muscle growth. This will obviously make safe transfers from bed to chair much easier. That and I'm losing weight about 7lbs so far. I spoke w the dietician when I came here and was put on a reduced fat/cholesterol diet per my request.

In summary: I continue to try my best to focus on my progress, no matter how small it seems, is still progress. Don't get me wrong, I'm still prone to bouts of self-doubt and maddening frustration!  But I'm clinging to the good news like lifeboats and the more progress, the more lifeboats. I hope to soon have a yacht of collective lifeboats.

Please keep the amazing thoughts coming, I think they're helping.

-Liana

A quick update!

Greetings Friends and Followers,

I wanted to keep you apprised of my progress and latest info: Yesterday I was transferred to CareOne At Madison Ave (which is actually in Morristown) and have been admitted to their subacute rehab floor. It's a beautiful place, a 1901 mansion that was converted to a multi-unit care facility a few years ago. The staff are very upbeat which is helping me to be the same. I've been evaluated by physical and occupational therapy and they are setting up a treatment plan not only to start with but with anticipated weekly goals and subsequent increased activity. Everyone I've spoken with from administration to therapist is aware of my goal to return to my independent living apartment and they have all indicated to me that I will achieve just that.

I'm hopeful and am encouraged by this facility and their reputation for excellence. I know some days will be desperately difficult but in the end, I'm right where I need to be to get back to where I belong.

A fall back

Hi Everyone,

Last Tuesday I fell and 'shattered' my left leg. I had surgery to fix it w pins and all that good stuff. I've been in the hospital 5 days and will discharged to a sub-acute rehab facility in Morris County so I'll be closer to my family. I've been told I could be there a month to three months 'roughly' which means I'll be gone a while. My sister has already been to my apartment to clean it out, get rid of food, etc.

So as to my beloved blog: I clearly can't promise a weekly notation while this is going on. But I DO hope to compose a passage or two when I feel up to it-I'm sure I shall have plenty to talk about!  I'm not sure I can commit to my weekly posts when I don't know what to expect at Rehab. I'm also super scared but hoping this may turn into quite the comeback tale. Wish me luck and keep in touch. I can't wait to get back to Allendale.

Liana

You don't know what you don't know

Ah, the lazy days of summer are now upon us... Unfortunately this often means air-conditioning hibernation for many MS patients-myself included.  However, this summer I have been blessed with central air so I may have to hibernate, but at least it’s not just one room.  In my old digs, I spent many a summer day stuck in my bedroom, for it was the only room cool enough for me to function in.  So today, I shall give thanks for my improved housing situation and the dehumidified freedom it provides.

 

But alas, this week I must share a gripe as well. On Monday I had an appointment with my primary doctor whose office is in Budd Lake.  So let’s count the multiple variables that were working against me that day: It was quite hot out. My aide called out that morning so I had no help getting dressed or putting on my shoes. I was as devoid of energy as I have been the past month.  So-the odds were already somewhat stacked against me.  I did not even bother trying to wrestle shoes on so I just went barefoot.  I somehow made it to my car where I was blasted with heat and had to sit and be immobile for a bit. But I ultimately made it into the car and used my handy cloth belt to drag my legs into position. Hooray, it only took me 90 minutes to get dressed and to the car!

 

The drive itself was quite fun actually- I hadn’t taken Falcor for an extended journey in a long time.  When I got to the doctors office parking lot, the handicapped spaces were taken.  Mind you, even the ‘accessible’ space often IS NOT due to insufficient room to deploy my wheelchair ramp.  So I parked diagonally across two spaces, trusting that the handicap placard AND the writing on the van that states, “ramp installed, do not park within eight feet” would excuse my having taken two spots.  After my appointment was over, I hauled myself back into the drivers seat (only 15 minutes that time!) and was about to start the car when I saw it: a note tucked under the windshield wiper.  I couldn’t reach it from the window and NO WAY was I getting out and in again  just to fetch it, so I called back up to the office and one of the receptionists came down to get it for me.  My heart sank before I read it because I just knew it was going to say something ignorant or worse.  It went something like this, “Just because you have that blue tag doesn’t give you the right to park anywhere you damn please...” There was more written about how rude and inconsiderate I was, but I stopped reading.  The receptionist, who’s always been nice to me, said she thought she knew who wrote it, that it was someone from another office in the building and that I shouldn’t take it personally because that woman is a notorious b***h.  But of course, my hyper-emotionally self was crushed.  Somewhere nearby was a person who probably felt vindicated in writing that note to me, not knowing the real reason I took two spaces.   It’s not like I drive a friggin Ferrari, it’s a minivan!   It made me so unbelievably sad to think how justified that schmuck felt, how he or she probably drove off thinking they put me in my place.  If only they’d opened their eyes a bit to see the warning on the van door OR the folded up ramp, were they to peek inside.  That jerk got to feel righteous about writing that note and I just cried out of frustration.  I realize the ‘able-bodied’ world around me cannot always grasp what it’s like to be a slave to a wheelchair. But there are days when I just wish they could roll a day in my life-or any handicapped person’s life for that matter.  I often feel there is an unconscious conceit in being able-bodied, that state of ‘ignorant bliss’ that enables the average person to take their legs or arms or brain for granted.  

Showing Improvement

Greetings and salutations from my recliner. I prefer to enjoy this spot for relaxation and it IS where I typically spend lots of time...but the past three weeks, it has become a magnet towards which my body seems annoyingly drawn. Spending hours a day (and night) in a recliner would seem enviable to most but trust me-it gets crazy old. I've memorized more commercials than I'd care to admit and at some point, I fear I may turn into a Magic Bullet or some form of spray-on hair.

Since last weeks blog things have been improving, albeit painfully slowly. I've been making more attempts to spend time outside (but the poopy rain sure isn't helping me in that endeavor!) my next 'hurdle' will be to take a spin in my beloved Falcor. I'm haunted daily by the sight of him parked, woefully unused! I worked waaaaay too hard to get that car to not use it! And so I shall-as soon as these daily downpours take a break!

In other news, this week we had a group meeting held here at Crescent Commons. Gathered were the  residents of our complex as well as Orchard Commons and Roberts House, two more of the communities founded by Bergen United Way. Also in attendance were assorted family members of the residents. It was a short meeting and a nice chance to meet more of our neighbors as well as hear about joining Crestwood Lake.  Naturally, I was curious about whether the grounds are wheelchair accessible and it sounds good-but I'll likely take a tour to be sure. And considering the lake is *right across the street* I'm going to sign up. I hope to make it a nice place to read a book and bring family to when they visit Apartment Awesome. I might have to start calling it Apartment Awesomer.

Another Decade to Reflect

Last week I joined the esteemed ranks of the ‘closer to 40 than 30’ club. I had my friend and her kids over for dinner and my sister came with Dairy Queen. Instead of a whole party that may stress me out, I enjoyed some of my favorite folks with a fabulous ratatouille followed by my favorite DQ cherry dip. I got calls from both parents and every sibling, lined my awesome birthday cards on the bookshelf. By the end of the day, I was pretty worn out but I think I fared pretty well overall. In past years I haven’t necessarily wanted to make a big deal out of my birthday because sometimes I just didn’t feel worthy of celebrating. Thankfully this year I saw fit to accept good tidings and it made for a lovely day.

Funny, it seems like just yesterday I was deep in the throes of my quarter life crisis. It’s just occurring to me now just how much has transpired since then...A thought quickly followed by my realizing how difficult it would be for me to summarize the last decade. All I’ll say is that on my 30th birthday I vowed what an awesome decade it would be since the 20’s had been so tumultuous. I’d like to think that so far, that prediction has been mostly correct. I mean, sure-I went from cane to walker to wheelchair but even that wasn’t as bad as the fear I endured in my 20’s waiting for just that to happen. There was something so damningly dark about the unknowns MS had in store that at times it’s almost preferable to be in a wheelchair than to fear it lurking on the horizon. If someone had asked me ten years ago if I saw my life unfolding the way it is today--I’d have thought them mad. For all the years I spent pining for my legs to work just a little longer, there was always that cloud over my head reminding me that it wouldn’t last forever and that was pretty brutal. I’ve gained a certain mental freedom over the years that I've lost function. Freedom from the ever-present ache of dread. It seems so foreign to see loss as a gain. Right now, today, I am reflecting on how much more possibility my life holds now that that dread has waned. No longer do I have to tread lightly for fear of what the next week, month, or even year may bring... So this week, I begrudgingly leave it at this: I mourn the loss of my ambulatory self but am relieved at the death of uncertainty. At least this way I know where I stand, so to speak.

"This is where a mother wants to be"

My Music: Corinne Bailey Rae

This past Sunday had a rough patch for me, physically. I had family over for a combined Mother’s Day/upcoming birthday party for me and my sisters. Let’s start with the great part-the fact that everyone came over to my place! This is wonderful for me not only because I now have a lovely space of my own to show off but it pretty much guarantees my attendance at family functions. Before Apartment Awesome my presence at parties or gatherings was spotty at best (and still is) but the apartment has taken away the stress of wanting to be out amongst the world but often having no choice in the matter. Now oftentimes, the world can come to me and it’s been beyond fantastic thus far.

And yet there are days, like this past Sunday, when everything should go right-after all, I was in my comfort zone and blissfully absent were the usual stressors of bathroom issues, the fear of an unknown location, and exhaustion from driving (assuming I was able to get dressed and get to the car.) But I’m afraid MS doesn’t really care about these things sometimes. Actually, MS doesn’t care about anything, but I digress... It was a fairly warm day and I neglected to turn the air conditioning on because, well-I guess I was too excited for company that my body steadily overheated to the point of uselessness. I was essentially stuck in my bedroom on a chair and completely devoid of any strength or power. Getting up and around is never easy, mind you, but usually I get where I need to go-it just may take a few attempts. But this was different. I felt like someone had attacked me with a lifeforce vacuum and left a limp version of me behind. So I sat there for an hour and a half, making sporadic (useless) attempts to push myself up with my arms. My family began dinner without me-at my insistence-and my sister and mother took turns staying with me, ready to help me up once my strength returned. Eventually I requested to just be alone and distracted myself playing games on my phone. I KNEW that this couldn’t last forever-I’ve been similarly sapped of energy before and eventually it passes. But I cried-upset that this stupid disease was robbing me of time with my family again. At one point I said to my mother, “Some Mother’s Day for you-stuck in here with me crying.” Her response? “This is where a mother wants to be.” Amazing.

Well I eventually worked up the strength to get up and was able to eat with my family a bit. I watched my niece dance around and my nephew copied her every move. This day was proof that I’m (slowly) getting better at handling my worst situations and the hopelessness that accompanies them. I don’t know if I’ll ever be able to just brush off these humiliating experiences. But I am shortening the time spent between misery and recovery.