Friday, July 12, 2019

Resources and Innovation

When your nurse has to get creative to force your veins to take the treatment. 

I decided to take a break from all the work I have for my classes and write a quick post.  So much has happened in the last few weeks.  I guess I’ll just dive right in.

Firstly, I got my new wheelchair!!!  It looks so sleek and I love the single footrest instead of the two.  My feet like to stay together so trying to keep them on two separate foot plates was impossible most days.  And, since the foot plates where push out in front of me, a foot or both feet would decide to go under the chair so they could sit at a 90-degree angle.  Thank goodness that is a thing of the past…  The new chair holds me at a great angle, reduces the spasticity, and is so smooth to propel.  Unfortunately, I can’t use it.  Yet! 

New chair just waiting to be used!  Plus, my Handy Bags.
In my supplier’s determination to make me as comfortable as possible, they got me a Roho cushion for it.  They are amazingly comfortable; however, they are impossible to transfer on and off of if you have any weakness at all.  The cushion is made of air pockets to take all the pressure off your skin, but the light weightiness is what makes the transfers difficult or, in most cases for me, impossible.  The air moves between chambers giving me nothing to push on to move and the edges roll back as I am getting on so it ends up dislodged and stuck under me.  And yes, it is supposed to be under me but not in the ways it is at that point!  Since I live on my own, that could be pretty dangerous.  It could cause me to end up on the floor and, since I can’t lift myself back in the chair yet, I’d have to call my brother to help.  They are getting me a replacement (Jay Ion) foam cushion that will be easier to use in my situation. 

The Pouch by Handy Bag

The Dynamic Bag by Handy Bag
Anti-Theft and easy to pull to the front from the back.
Something we found while trying to get me set-up to go to school on campus this fall was Handy Bags.  Ingenious bags that were made specifically for wheelchair users.  If you are in a wheelchair, you know all too well the struggle with purses.  If you have spasticity and pain like my mama and I, then you know that weight on your legs is painful.  If not, then you know they can just be incredibly inconvenient, and you are constantly clutching it, so it doesn’t fall (if you are in a power chair) or praying it doesn’t fall (if you are in a manual).  Handy Bags is made out of Israel by people who actually face these challenges, so they are incredibly well thought out and nice quality.  My chair is equipped with the Dynamic bag and the Pouch.

An IZ Show.  No sweatsuit present.  :)
Another place to look at is IZ Adaptive.  This company makes clothes for all sort of disabilities.  Most clothes in tradition stores are made for standing.  They are cut for people who stand up and down so you don’t really notice the inconveniences they can pose while sitting.  If you are in a wheelchair, this is a little tougher.  Pants are too high in the front, therefore, they are constantly bunched up on your thighs.  Or they are cut too low in the back and show areas we’d rather hide.  Coats are difficult to get on and off because they bulk up around you, making it difficult to move (take it from someone who layered all winter so I could avoid wearing one).  Even shirts can be a pain, though less than the others.  IZ Adaptive has solutions for all of that.

I was blessed that my mama has collected all these resources through the years, so we knew where to start with me.  If you are new to being handicapped, it can be hard to find some of these resources if you don’t know what to look for or what is open to you.  It’s 12 years of searching that brought us some of these for Mama, and now me. 

One of the tough aspects of this for me was the onset of Neurogenic Bladder.  Not fun and very upsetting.  Because of the loss of feeling from my lower back down, I lost feeling there as well, meaning there is very little control.  I tried to hide it for months (stupidly but the embarrassment, you know….) until I just couldn’t keep up.  I went into the doctor (yet another) and they decided I needed to start using a catheter.  That was a hard hit to take but, honestly, it has solved so much.  I can hydrate again and don’t have to be scared to leave the house.  I didn’t let it hold me back but it was a stress I had to contend with.  What I wanted to show you guys is an amazing product and another that is self-made and invaluable if you are on this journey too. 

The SpeediCsth Compact next to my favorite brand of lipstick.
The first is the SpeediCath Compact.  If you leave the house, it can be a mess to do this in a public bathroom.  You have to be so careful and the process can be time-consuming and difficult.  The compact is a lifesaver!  It is small, pre-prepped, and has more area to let you work with less area that can be infected.  Plus, when you are done, us just slid it back in the cap and throw it away.  It looks like a tampon applicator so no one would guess.  As an additional bonus, it takes up much less purse space. To be prepared, I follow my mama’s long learned advise for using the toilet in public when handicapped.

A true Lifesaver.
The last would be this little contraption that is self-made (put together by my mama to help me with this process).  Learning to self-cath can be daunting.  As women, we can’t really see where we are going and there are a few places for it to go…  So, they advise using a mirror.  That’s all well and good but balancing a flip mirror on the toilet while trying to do that and, in my case, keep my legs calm is about as easy as it sounds.  That little mirror was constantly flying, and I kept being afraid it would go backwards into the toilet…  Plus, I had no idea bathrooms were so poorly lit!  I never really thought about it or noticed but, they really are terribly lit.  So, my mom thought of a way to help.  It is a movable phone holder with a lighted compact.  This allows me to position the mirror as needed and use the light from the compact if it is too dark.  I just throw it in my bag on the back of my chair and pull it out when needed.  Since it is a screw-down attachment and not a clip, you can attach it anywhere.  Grab bars, toilet paper holders, even your chair. 

Easily attached and unattached to the most convenient surface.

I hope this helps someone out there.  I know the process of adjustment is tough but there are resources out there and, what isn’t readily available, you can get creative with.   

Because flowers make you smile and Basil smells so good!

Thursday, May 30, 2019

A Crazy Few Months...

Sebbie enjoying the sunlight.

Oh, gracious!  I feel terrible it’s been so long since I posted.  In my defense, things have been crazy!  How?  I’ll explain.

Ren always had the sweetest little face.
              Firstly, it’s been an emotional couple of months.  We unexpectedly lost little Ren, my mom’s bonded sugar glider.  Within a few hours, she was just gone…  It was really tough.  Then, a few weeks later, our Bernese Mountain Dog (Sebbie) started going downhill.  He was almost 12 years old so it wasn’t unexpected but that hardly made it easier.  We found a beautiful burial in a lovely rural area.  They were laid to rest together, which was fitting since both were Mama’s babies that never left her side. 

              Secondly, college!  Balancing what was needed for both UNC and RRCC has been a full-time job!  I did get my summer/fall schedule completed for UNC!  12 credits over the summer and 15 in the fall.  Plus, I managed to end the Spring semester with a 4.0 GPA!  The higher I can keep that GPA, the less of an impact the forthcoming math classes will make…  I know.  Face them with my chin up and a positive attitude.  Busy, busy! 

Then, there was working through getting a housing assignment at UNC.  Due to the wheelchair, I had to work with both disability and housing services, which meant getting both sides to communicate and coordinate.   Don’t get me wrong, they were both sweet and very helpful, but anytime you have that many parties involved, it’s going to get a little crazy.

My new desk space at the apartment!
              In the end, however, I ended up with a lovely 2 bedroom, 2 bath apartment that has an in-room washer and dryer and access to a full kitchen (since the dining hall could be a bit dicey for me).  The apartment is handicap accessible too so, yay!  So far, no roommate assignment has been made but it should be interesting once there is.  😊 I have to admit to being a little nervous.  This will be the first time I’ve lived alone.  Plus, there is the disability to now contend with; which, since it is so new is still an adjustment.  I think it’ll be good though!  It’s a great area, with lots of resources, and the college has been amazing.      

My new living room!
I know, it needs curtains and some artwork, but one step at a time.
It has an accessible couch I can actually get on and off of!!!
              Then, there is the new car and wheelchair!  My dada found a 1997 Dodge Caravan with a ramp, swivel chair, and hand controls.  This means I will have an accessible car for college!!!  Dada has been working really hard to get it ready and I couldn’t be more grateful.  It will be so nice to be able to drive again and a relief to have a car I can use when I’m on my own.  I can do my own groceries, medical appointments, etc.…  Or just drive to the classes when it is pouring rain, as it has for the last 2 weeks.

              My new wheelchair should be ready in a couple of months and I can’t wait!  The doctors recently moved me to a manual wheelchair to start building my upper body strength back up.  I found the nicest company to help and help they have…  They currently have me in a loaner chair.  It’s not perfect, but I can get around and it is surprisingly comfortable.  Then, we got my custom chair ordered.  I honestly had no idea so much thought went into fitting someone for a chair!  Strength, posture, weight, occupation, living situation, the list goes on.  In the end, they tweaked the foot plate to help rein in my legs when they are spasming, tilted the chair in various ways to help with the spasticity, adjusted the appropriate height and width, helped with the back height so I’m not hitting my elbows, and so many other things.   As for color, it’ll be a matte black frame, with black wheels and rims.  Very sleek and anti-clashing with my clothes. 

              The unbelievable surprise was getting power-assist for it!  I had thought about it but figured I wouldn’t qualify; however, I did!  Because I am in college full-time and running all over a very hilly campus all day, they wanted me to have it, so I don’t wear myself out completely.  Which means, hills, carpets (a wheelchair nightmare I have learned), and long distances become a lot easier.  Now, the waiting process begins!!!

              I had been taking the manual to RRCC during the week.  The first day, I thought I was going to die…  Those were some very weak muscles that did not want to be bothered and made sure I knew it.  To make things worse, the college is entirely carpeted.  Ok, I get why in theory; however, pushing a wheelchair on carpeting is a ton of work.  On hard floors (tiling, concrete, wood, etc.), once you get the chair going, you can just roll along with little effort.  On carpeting, you only go as far as you push and pushing can be incredibly difficult since the friction between the carpet and your wheels is so high!   That first day, there were times I felt like I wasn’t going anywhere at all.  My speed is not that bad now, but it’s still very tiring.  On the upside, I slept well those evenings.  I did learn my right arm is much stronger than my left, which meant learning to compensate so I wasn’t constantly turning left or going in circles. 😊

              So, as you can tell, it’s been crazy!  Hopefully, things even out a little now that I am moved and settled.  I am looking to start an extension of Healing Fibers Foundation on campus.  It would be a great way for people to socialize, learn about fiber arts, and deal with the stress of university.  If things go well, I’ll get it up and going over the summer.  Wish me luck!

Tuesday, January 29, 2019

Revelations about College

              Oh, the joys of math class….  Definitely my least favorite class of the whole lineup.  I like my teacher, which helps, but math is still math.  The rest of the semester is going great!  We are currently studying the Paleo-era in History, birth in Psychology, and rhetorical writing in English.  All interesting and accompanied by tons of homework. 😊  Oh well, that is just life for the next 8 years.  To be honest, I’ve enjoyed going back to school. 

              One of the challenges, however, has been getting around in the wheelchair.  I managed to get all my textbooks as eBooks so I don’t have to carry them in the school.  This makes the backpack on my lap dmuch lighter.  I make sure to get to class early so I can move a chair to make room and get set without displacing someone in the process. Although, I can’t complain about any of my classmates.  They have all been very nice and, often, if they see me struggling, are happy to help.   

It has surprised me to see as many other people my age in wheelchairs.  I’ve talked with a few and have found the causes are everything from stray shrapnel in the line of duty to random freak accidents.  It’s a little sobering.  It’s been a tough adjustment, but I have hope that they will get me walking again.  Most of these people don’t have that hope but are still making the best of their situations and keeping looking forward with a smile, no matter the frustration they are sure to encounter. 

My mom has always said there are three reactions people have around the wheelchair.  You have the people who have no idea how to react and try to avoid eye contact.  This isn’t because they think less of you.  They are just uneducated on how to handle it.  Then there are the people who are just irritated you are there.  This can be for a multitude of reasons.  You are taking up more space than they deem necessary or you are moving slower than normal to maneuver around an object they can easily walk around, or they just think you will be inconvenient, so they act that way even before they have met you.  Their reasoning goes on…  Then there are the people who act normal and want to help.  Either they have relatives that are in similar situations, or they are just good-hearted and want to be friendly.  The more you are around people, the more this becomes the truth.  I always believed her but, in order to truly understand, you have to experience it.  

Friday, January 25, 2019

The Start of the Spring Semester and Exciting News!!!

Yes, I was accepted!
Campus Photos
              The school semester has officially started!  Psychology, History, Math, and English (13 credit hours) makes for a busy semester.  I liked all of my teachers too which should make class fun.  My least favorite class is always math, but I have an excellent teacher which makes it easier.  My English teacher was a favorite of my brother’s when he went through her class so I’m in good hands.  The history teacher was passionate about her subject so she was engaging to listen to.  My psych class seems like it will be enjoyable and the teacher was sweet.

On to the exciting news of the week! I’ve officially been accepted to the University of Northern Colorado!!!  I’ll be starting this summer as soon as the current semester at the community college is finished.  One step closer to medical school!  I’ve already accepted, filed for FAFSA, signed up for scholarships, and am talking with my counselor about housing!  The sooner everything is straightened out and set, the better.

            We decided on UNC because of the environment.  It is so calm for a campus.  The students are all super friendly.  The staff very helpful.  It was a comfortable environment, which is very important considering I’ll be there for the next eight years.  I’ll even get my Physical Therapy covered through the school which is a blessing. I can’t wait to get up there!

Monday, January 21, 2019

Goodbye to My Favorite Fruit... Tomatoes!

              After a lot of research, this new route is looking positive.  What a blessing that would be!  It will still be a long, tough road but I think it is at least headed in the right direction.  I’m on week 2 of my new supplement routine and have worked out a schedule for everything so I stay on track.  I’m hoping to see some improvement soon.  I have managed to get a couple of decent nights’ sleep which is much needed and feels awfully luxurious.

Egg Bites for Breakfasts!
            Because of this new path, I have new dietary restrictions.  We have added chicken back into my diet since I am desperately in need of protein.  Yay!  Tonight, I had chicken for the first time since September 2017.  It tasted amazing!  However, because of the Celiac, all gluten is forever gone.  That was difficult but doable. The tough one was losing nightshades.  All peppers, white potatoes, tomatoes, eggplant, etc…   That has turned into a royal pain!  You’d be surprised what all they are in.  (hint: everything!)  But you do what you must.

Slow Roasted Teriyaki Chicken.  It was amazing! 

            Tonight, I spent time with my brother and father food prepping for the week.  We made egg bites for breakfast, teriyaki chicken with fried rice and broccoli for lunch, and turkey meatballs for dinners.  The boys are both on a diet to help with the CrossFit routine they are following.  They very sweetly decided to alter their meals a little to include me so it would be an easier transition into these new restrictions for me.  

Dada frying steaks for his and Sam's egg bites.
I'm back on chicken and turkey but still off red meat.  Too inflammatory...

            We always shake our heads when people say, “well, I could never give that up”.  You do when it makes a difference in your quality of life.  When you can no longer walk because gluten is tearing your body up, you do whatever it takes to reverse that.   If living a normal life means giving up certain parts of your diet, you do it gladly.   While inconvenient, it seems a small price to pay.  On the upside, you stay fairly slim and fit when your food is so anti-weight gain.  

Friday, January 11, 2019

The Storm Before the Calm

              Today was a good day in the wake of a rough night.  Last night, I got out of bed at about 3am to use the ladies’ room when my thigh decided to spasm and send me sprawled out on the floor.  Because it continued to spasm, I couldn’t even get back up.  My phone was in my bedroom but, thankfully, my parents had gotten me a Samsung smartwatch for Christmas.  The watch has an SOS on it, so I was able to ask for help.  My brother got the message and came to my rescue.  He picked me up and got me in my chair then let me bawl all over him as I cried my eyes out, all the while rubbing my back and telling me everything would be ok.  He really is a sweetheart.

            After that, I got a whole 2 hours of sleep…  In the morning, my family headed to the doctor’s office for my appointment.  We have all always been very involved with each other’s medical treatments.  No one has to work through health issues alone in my family.  We all piled in the appointment room, guys included since it was just test results and not an examination.  It turns out that I am very deficient in some very important things, on top of being Celiac.  They believe my condition is a layering effect that led to the auto-immune.  My diagnosis sheet is starting to fill out and look like a medical textbook.  This time, however, we are hopeful.  They gave me an IV Infusion of some essentials to get me started.  I have been going since 2:30pm when they gave it to me and I still have energy!   I haven’t felt this good in months.  Even my parents mentioned there was a pep to my voice they haven’t heard in a while.

            It’s now 11pm and I have started to wane.  However, the hope is still present.  With hard work, a good attitude, and perseverance, there are results in sight.  It’ll be a long journey back but, just like with PT, I’ll push through with a prayer. 

Oh, the nostalgia!  16 years old in rural (yes, rural) NJ, after High Tea looking at
a friend's new rifle.     


Wednesday, January 9, 2019

Healing Fiber Foundation

              Tonight, I would like to talk about something near and dear to my family.  Years ago, my mama founded a non-profit called Healing Fibers Foundation.  The goal of this organization is to help people who deal with chronic illness find a therapeutic respite in fiber arts.  This includes caretakers since we know all too well the stresses and struggles involved in caring for someone with disabilities or illnesses.
            When my mama became ill years ago, she rediscovered knitting as a way of keeping her mind off the pain and struggles she was facing.  From there, it expanded to crocheting, weaving, spinning, and just about any other fiber related art she could find.  It kept her hands, not only busy but dexterous.  The patterns were engaging and kept her mind sharp.  The spinning wheel was used as a form of exercise to help reduce the tightness in her legs.  Fiber arts have played a huge part in keeping her sane during the last 11 years while she faced incredibly challenging physical issues and fought to return to functional health.  

Bobbins of Silk/Yak singles ready to be plied.
            Realizing how helpful it was for her, Mama wanted to help others who face the daily challenges of chronic illness find their way to fiber arts.  She has now been published in Spin-In (an international magazine through Interweave), runs a Facebook group, developed kits (currently offering knitting, spinning, and crochet) to help teach and get people started,
and has a group of faithful followers who are always welcoming to new people.  This gives people a place to complain and talk about the challenges they face without judgement or the ever-present questions and recommendations that everyone seems to want to pass along.  It’s a place where people share their triumphs, in both health and crafts. 

            If you are looking for a place that is accepting and understanding, this is a great resource.  

Kits ready to go!