Hi all! So, many people always ask how do I travel or get around if I need to go someplace. Most of the time my family takes me, especially if it's to a doctors appointment for Haley Jean. Or I also use PACE door-to-door service. However depending on the weather I may take public transportation such as the train or bus. Using my power chair is easier for me because the physical strain of pushing my manual for long stretches at a time can be difficult & painful. Not to mention the rough terrain of the ground throughout parts of the city. Holes, cracked concrete & uneven slabs are unsafe for riding. One day, I had to pick up a script from Rush's PICU for Haley Jean & fill it at the pharmacy. I didn't set up transportation arrangements ahead of time & my sister was busy so my only option was the bus & the "L". By the way, the weather wasn't the greatest, it was raining & cloudy. My chair CANNOT get wet otherwise it may malfunction. Under these circumstances, a mother's duties never end. This is the main reason I'm raising money for a vehicle so I don't have to deal with the madness of public transportation....http://www.gofundme.com/6p5vb0 No one realizes the hassle it takes for a person in a wheelchair to get to & from by using the Blue Line to the Medical Center Stop. First, getting from my place to the Forrest Park stop has been eventful, as many times before I've gotten down there only to find the elevator is out of order. Which means either I just head back home or take an alternate route on the bus. Anyhow once I arrived at the Medical Center stop, I found that the Pulina stop has a turnstile, not a wheelchair accessible entry-way. Of course the nice bus station attendant didn't tell me that I couldn't get out on that end & it took 10 minutes to get to the top of the ramp & back down. In order for me to exit the ramp I have to go 2 blocks west to Damen Ave. then come back 2 blocks east to get to the hospital. I asked the attendant who was there by the time I was heading home why was there a turnstile & not door I was shocked to hear the reason being that the city or CTA doesn't want to pay a human to man that station such as that of the Damen entry. So after gathering my thoughts & dignity I decided to time & record my route back to the train from the hospital. The sign outside the Pulina stop says "Wheelchair access 2 blocks West" I have finally had the chance to record & attempt to debunk that "2 blocks WEst" crap ASAP!!! Below is the link to my youtube video of the nearly 20 minute trek back to the "L". While it may be 2 City blocks total, the mileage is clearly much longer. After finally making it to Damen my phone battery cut off, & almost my chair battery. A hassle is an understatement. While I was not doing any manual labor, I couldn't imagine anyone else in a self-propelled chair being forced to push that long exhausting length. needing just to get to the train. Why doesn't the city accommodate us when many people using that stop have some level of physical limitation? It's a hospital for Christ's sake!!!!! It took me 20 minutes to get to the platform, when the average person's travel time is significantly less. I emailed CTA about my findings but never recieved a reply. I'm hoping the Mayor sees my blog & video & make some changes. I began using that stop after I had my daughter & was going to visit her in the NICU very often. Some nights I'd leave the NICU after 10pm & make the long journey alone. I pray this message reaches the right people that can & will make changes to improve the Pulina street Blue Line L stop so that all can utilize if freely & effectively. Click the link below to see me in action....:)
https://www.youtube.com/watch?v=Gsk4FkRirPw
https://www.youtube.com/watch?v=9H6nqNcZX1Q
,
Tuesday, March 17, 2015
Sunday, March 8, 2015
Man Down...
Well it's official (in my opinion) I have a couple fractured or bruised ribs... After a very restless night I'm finally up & its 3 PM. Haley Jean knows if something is wrong, she reaches for me & whimpers. It's kinda cute! But it also hurts my feelings because as a mother you want to always be available to your children. A cold or flu is one thing, the pain of fractured ribs is a horse of a different stripe. I'm sure you're wondering how it happened. Well usually I don't go into detail or of fear of creating sensationalism but here goes.... Blowing up balloons! Yep that's it.... I blew up about 30 balloons last week for Haley Jean's 2nd Birthday. You will never fully understand the amount of stress that puts on sensitive rib cages. Then you wanna know what put it over the top..... I zipped my coat! Yep.... I zipped my coat due to the cold weather, I shouldn't have done that but I did & now I'm laid up a few days. This is why I never dress properly in the winter because the pressure it puts on my chest is pretty intense. I do it because I get tired of hearing... "Hey where's your coat.. Or zip that jacket its cold out" seems trivial but hey, when you hear things long enough you start doing things to avoid the conversation. This is one of the hardest parts of being a mom with limits, you can't be there in the full capacity like you want. I can't hold our pick her up & even more heartbreaking is that I have to rely on others to help us. I don't like obligating people. Oh well, guess I'll lay on the couch a few days with Haley Jean right next to me. I will simply do what I've done before.... Wait it out. It's not as bad, there are breathing techniques to get accustomed to as well as sitting positions. Going to the ER isn't an option... They'll keep me for 6 hours, do xrays & find NOTHING due to my less-than -average skeletal make. Ever seen a chest XRay of an OI patient? Looks like a train wreck .... Well ya just can't really tell what's what, unless it's a clean break. Otherwise you're screwed. Not sure what's worst, the pain or the expression on the ER Residents face when they can't really help. I always reassure them it's not them it's me... Only good thing is the pain meds: ) At least then I can have a little relief..... Until then......: P
By the way...;)
Wednesday, February 25, 2015
Passing the Time...
Greetings all! Hmmm...it's been a couple weeks right since I posted. I've been occupied with what they call "Life" in the past weeks or so. Nothing out of the ordinary but still occupied. I'm up tonight blogging to kill a whole hour before I need to get up to administer meds. I have an alarm that I do respond well too, however it's just easier on me [my body] to stay up until then. So I thought I"d post a quick entry as I attempt to keep these eyes peeled & the mind energized til 3am...Fingers crossed xxXxx :)
Lately life & it's many ups & downs have been catching up with me. I'm always on the go & hardly sleeping much. I'm sore a lot lately....A whole lot. More than usual. I know it'll pass but if it doesn't then oh well. I'm giving myself that pep talk, not for myself but more-so for those around me. I figured if I show some optimism in my health they'll back off with the worrying. Truth is, this is my life. It's always filled with pain, always has. Nothing probably won't change that. It's not that I'm looking forward to it or welcoming it into my life, in fact it's the very opposite. I just know the truth of my reality & that reality is living with OI can come with a lifetime of pain....You get accustomed to it. Some days you're able to manage without it showing on the outside & other days you can't hide it. And lately I haven't been able to hide it the way I'd like. The face never lies..It always tells on ya...Expressions that is. Just when you thought the phrase "hey you don't look so good" was a t hing of the past, someone bites ya in the butt & says..."hey you don't look so good"...LOL...I'll be fine though really. The cold weather contributes to bones that aren't in the best health by default so all I can do is bundle up, rest & pray for some relief. My age, having a baby & living with OI all play a major factor in my pain. It's come to a point where I've seriously gotta lay off the cheese burgers & Pepsi & start eating foods that will contribute to my energy level & exercise so that I can keep up with my growing Honey-Dew Melon: Haley Jean!!
Well I guess I'll get a head-start by peeling myself off this couch & get started. I know I've got 20 mins but hey....I'm starting to ramble & if I don't go now they'll be hell to pay...LOL..Overall we're doing well & HJ has been home nearly a month doing so fantastic that I can't contain myself. I'll try to check in again sooner than later. Oh, click the youtube link below for a little treat. Gonna go now so I can catch some Zzzzz's
....Til next time. :)
https://www.youtube.com/watch?v=CFt0pLL3b7A
Lately life & it's many ups & downs have been catching up with me. I'm always on the go & hardly sleeping much. I'm sore a lot lately....A whole lot. More than usual. I know it'll pass but if it doesn't then oh well. I'm giving myself that pep talk, not for myself but more-so for those around me. I figured if I show some optimism in my health they'll back off with the worrying. Truth is, this is my life. It's always filled with pain, always has. Nothing probably won't change that. It's not that I'm looking forward to it or welcoming it into my life, in fact it's the very opposite. I just know the truth of my reality & that reality is living with OI can come with a lifetime of pain....You get accustomed to it. Some days you're able to manage without it showing on the outside & other days you can't hide it. And lately I haven't been able to hide it the way I'd like. The face never lies..It always tells on ya...Expressions that is. Just when you thought the phrase "hey you don't look so good" was a t hing of the past, someone bites ya in the butt & says..."hey you don't look so good"...LOL...I'll be fine though really. The cold weather contributes to bones that aren't in the best health by default so all I can do is bundle up, rest & pray for some relief. My age, having a baby & living with OI all play a major factor in my pain. It's come to a point where I've seriously gotta lay off the cheese burgers & Pepsi & start eating foods that will contribute to my energy level & exercise so that I can keep up with my growing Honey-Dew Melon: Haley Jean!!
Well I guess I'll get a head-start by peeling myself off this couch & get started. I know I've got 20 mins but hey....I'm starting to ramble & if I don't go now they'll be hell to pay...LOL..Overall we're doing well & HJ has been home nearly a month doing so fantastic that I can't contain myself. I'll try to check in again sooner than later. Oh, click the youtube link below for a little treat. Gonna go now so I can catch some Zzzzz's
....Til next time. :)
https://www.youtube.com/watch?v=CFt0pLL3b7A
Sunday, February 15, 2015
"We Can't Get Too Close"...
So...The most amazing thing happened on the way to the forum :)
NBC's "Grey's Anatomy" episode was centered around a couple who's unborn baby was suspected to have a diagnosis of OI Type II, one of the most fatal mutations that anyone can have. Statistically, most babies born with TII don't live more than a few hours after birth, sometimes a bit longer. This mutation consists of severely underdeveloped lungs, low birth weight, airway & respiratory problem almost no collagen & other health issues that can be irreparable. The couple decided it was in the best interest of the child to terminate the pregnancy. Many people of the OI Community weren't thrilled about the manor the news was delivered. Nor were they happy about the ending. For the past few episodes they ran this subject & I tweeted the show with Haley Jean's picture. I wanted to show that there is life beyond the diagnosis & in some cases OI isn't a death sentence....I got a RT from the show!! It was so exciting...I could barely contain myself. So many people RT, favorited & followed me back. I liked the idea of spreading awareness.
"We can't get too close" was a line from the show that will probably stick with me always. My parents faced this very potential option, told by medical officials to abstain from getting attached. Not much info was available in the 80's so it was a waiting game. This episode hit home for many people living with OI or somehow associated with it. That conversation, the tone, anxiety....The harsh truth of what is to come or what's to be is so heart-wrenching. Because I have Type III, the likelihood of the child having the same mutation was 50/50. While there were complications to be expected, none were like Type II. Many ask me how did I do it, how do I manage..My answer is always the same....I allowed Him to direct my footsteps, included Him in all of my decisions & It was by God's grace that He carried us through the midst of the storm...
My goal is to tell others faced with this devastating decision that with God there IS life beyond the diagnosis...:)
NBC's "Grey's Anatomy" episode was centered around a couple who's unborn baby was suspected to have a diagnosis of OI Type II, one of the most fatal mutations that anyone can have. Statistically, most babies born with TII don't live more than a few hours after birth, sometimes a bit longer. This mutation consists of severely underdeveloped lungs, low birth weight, airway & respiratory problem almost no collagen & other health issues that can be irreparable. The couple decided it was in the best interest of the child to terminate the pregnancy. Many people of the OI Community weren't thrilled about the manor the news was delivered. Nor were they happy about the ending. For the past few episodes they ran this subject & I tweeted the show with Haley Jean's picture. I wanted to show that there is life beyond the diagnosis & in some cases OI isn't a death sentence....I got a RT from the show!! It was so exciting...I could barely contain myself. So many people RT, favorited & followed me back. I liked the idea of spreading awareness.
"We can't get too close" was a line from the show that will probably stick with me always. My parents faced this very potential option, told by medical officials to abstain from getting attached. Not much info was available in the 80's so it was a waiting game. This episode hit home for many people living with OI or somehow associated with it. That conversation, the tone, anxiety....The harsh truth of what is to come or what's to be is so heart-wrenching. Because I have Type III, the likelihood of the child having the same mutation was 50/50. While there were complications to be expected, none were like Type II. Many ask me how did I do it, how do I manage..My answer is always the same....I allowed Him to direct my footsteps, included Him in all of my decisions & It was by God's grace that He carried us through the midst of the storm...
My goal is to tell others faced with this devastating decision that with God there IS life beyond the diagnosis...:)
Thursday, January 29, 2015
Thursday, January 8, 2015
Memory Lane...
Here's yet another short post. Just sitting at Haley Jean's bedside & thinking back to our first ER visit at this hospital. We're even in the same room as before.... She had just been discharged from the NICU after 6 months. Not even 24 hrs went by before we were heading back in. She was having trouble acclimating to an environment outside of the hospital: Respiratory distress. It was pretty scary. Everything I was taught in training in preparation for her discharge seemed to run through my mind like two -way traffic. I'm so thankful for those rigorous weeks of training. It prepared me for such a time as that & I'm grateful for all those who invested the time it took to help me get ready to finish this journey home: )
In the meantime, here's a couple links that should tickle your fancy :)
https://www.facebook.com/HoorayForHaleyJean?ref=aymt_homepage_panel
http://www.gofundme.com/6p5vb0
Haley Jean's Mom....
Greetings!!! Just a quick post tonight as I"m attempting my first try at Pinning my blog to Pintrest. Gonna be exciting!! After two weeks of antibiotic treatments, tacardic & febrile episodes we're still in the PICU. Again, what a way to ring in the New Year :( .....However it's been a productive couple weeks so I can't complain. Had a job interview right smack middle of her extubation....Talk about the case of the nerves..It's very challenging to balance & prioritize, I have no clue how I do it...I just do it...Anyhow, we were very close to a discharge this morning but with the fevers & tachacardic spats we can't risk any setbacks. I guess we'll look at it as a mini vacation....While she's here she can rest up under great observation & wonderful care. My kiddo is a trooper. Under the circumstance she's shown nothing but faith & resilience. It's me who's full of anxiety & a little fear. At any rate I hope to get some rest on this wrestling mat they call a bed.....lol..Oh the turmoil my back goes through when slumming in the hospital...It's not comfortable sleeping in a non-reclining recliner, or a 1 inch thin mattress. If you don't expect a week of back pain after that torture you're crazy!!! Sorry for the short post tonight. Not feeling quite myself this evening. The cold really does a number on my bones & since I've been sleeping here every other night I feel like a zombie. An aching zombie....Ugh! Tomorrow a hot bath will help with the swelling in my legs,ankles & feet as well as the throbbing in my side, that'll keep me going a few hours. Besides, watching my little girl grow & heal is what keeps my mind off the pain, it's the best medicine in the world :)
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