A "Frequent Flyer"

A walking path in my backyard

I began writing this blog post 7 weeks ago, starting with: “I have written each post this year saying that I had just gotten out of the hospital, although I’m happy to report I’ve managed to stay out of there and at home relaxing with Everett. I did have a UTI the week before Labor Day, but thanks to some quick actions of getting on antibiotics, I was able to avoid it.” In my last blog entry, I stated “… I don’t like every entry to be about me being sick or in the hospital.”

Since October of last year, I've been in the hospital 6 times. That's a lot for me and takes a toll on my body physically and mentally. I also need to miss appointments and ABLE because it takes so long for me to recover after a big stay like that. Despite what I wrote, September 23 I went by nonemergency ambulance. After some testing, they found I had case of double pneumonia. I guess I knew the first day that I went in, but soon my oxygen went down to the low 70s even on 5 L of oxygen and I couldn’t maintain it. After that, they had to slowly sedate me to keep me comfortable because I was having high anxiety, trouble sleeping and difficulty maintaining breathing. I was sedated for approximately 4 days.

In the beginning, they gave me 3 Bronchoscopy’s, a CT scan, x-ray and tried 9 separate IV antibiotics until they found a combination of 3 that finally worked. Also, my lungs needed to relax and heal. They also had to monitor me better, so they put me on one of their ventilators. I was even trying to fight their vent (meaning it was giving me 20 breaths per minute, and I was bringing it to 25.)

From the start, it was just baby steps, 1 foot in front of the other (or should I say, one wheel?) Also, since coming home, I’ve been sleeping a lot; something I don’t do enough of. I know now when my body says “sleep,” it usually means that I need to rest and sleep whenever I can. By resting, accepting help from friends and family, and gradual actions to recover, I have the best plan in place to a speedy recovery. There were signs and symptoms that went on right before, that I now realize to be something to watch out for before things get too extreme.

If you’re reading this and live outside of Minnesota, throughout the summer, Canadian wildfire smoke significantly affected the state. The worst air quality was recorded in late July and early August. Some of them were issued for multiple days at a time. I couldn’t go outside when the air was bad because of my asthma and the fact that I’m on a ventilator. I have trouble enough as it is. Not being able to get out of the house is hard enough but when it is more than a week it becomes depressing.

This past spring I started the process of applying for a new wheelchair. I’m eligible for a new one every 5 years and I’ve had mine for 7 years. It’s a long and daunting process, sometimes taking over a year for insurance to cover everything I need. First, I had to have my Dr. write a prescription. Then, I underwent a wheelchair evaluation with a physical therapist aside my medical equipment supplier. Finally, I selected which chair I wanted along with what I needed it to do.

I ordered it to recline, tilt, legs to raise, change drives (making it speed up or slow down, elevate, and other things my wheelchair now can do and more.) Insurance approved everything so far, except for the seat elevation portion. That’s what allows me to raise my chair up and down. It’s easier for people working to reach my height. I appealed it, but I’m just waiting for their decision.

Labor Day weekend my boyfriend Jay visited me from Jacksonville, Florida. We met through my blog. After his T1/T2 spinal cord injury happened in 2019, he was searching for everything related to SCI’s, and that’s when he came across my blog. He made a comment on one of my posts, I responded, then less than a year later, we fell in love and have been together since 2020. We met in person for the first time, Labor Day weekend. He’s coming on Thanksgiving and Christmas too!

Jay and I in my backyard

According to Wikipedia “The Minneapolis Institute of Art (Mia) is an art museum located in Minneapolis, Minnesota, United States. Home to more than 100,000 works of art representing 5,000 years of world history, Mia is one of the largest art museums in the United States. Its permanent collection spans about 5,000 years and represents the world's diverse culture across six continents. The museum has five curatorial areas: Arts of Global Africa, Global Contemporary Art, Asian Art, European Art, and Arts of the Americas.”

I had so much fun! The last time I was at a museum was for a grade school field trip, and I don’t remember any of it. My nurse and I went, just to do something fun besides going outside, out to eat, to the mall etc. There are 3 floors, and we barely made it through one floor, the 2^nd. My favorite painting was (1 of 4) in Vincent van Gogh’s series Olive Trees. This is a photo of me between Claude Monet’s Grainstack (looking at the photo, on the left) and my favorite painting.

Jenni

Here are 2 of my poems:

Expansive Roots

My limbs are rough, full of brown bark

despite not moving by themselves

they may falter in times of trouble

as my presence in the world matters

 

While my cracks show in harsh winds

delving deep into their structure and use

in my trunk’s importance in this world

proving I matter in the ecosystem

 

My roots are an expansive link

embedded in the dirt of Mother Earth

where I feed my self-worth within times

when I’m strongly supported by my presence

 

I am connected to neighboring life forces

stemming out reaching for provision up top

engaging with my family of surrounding trees

to construct a forest of my ancestries

 

With every breath I stretch into the clouds

as my experiences in life are deeply felt

although I have a few tangles to work out

with each year adorned with a new ring

 

My protection is my bark and layers

covering me so you can’t see

any of my tragedy or loss I’ve endured

that comes with being a dead tree

Canadian Wildfires

The city groans as it chokes on dust

exhaling gray, drifting smoke

hazy skies and air-quality alerts

obscuring the sun, covering towns

Like a curtain dropping from the sky

Canadian wildfires pollute Minnesota air,

strangling every tree in sight

spreading freely through dense conifers

A silent hold upon the once crisp atmosphere,

outdoors is forbidden for weeks

difficult to contain, as health is strained

harder for asthmatics to breathe

Embers sweep into drought-stricken fields

delicate lungs copiously cough,

hushing children’s play through the disorder,

as orange flames leave farmers at a loss

Newest Update

Since my last post, I was back in the hospital for another respiratory infection. It wasn’t pneumonia, but it was bad enough for me to be admitted. I went into the emergency room and was admitted on August 5, then was discharged on August 9. They sent me home for 2 days then I was back in the ER on August 11 for 6 days. The reason I went back into the hospital was because my mom, nurses, and I all repeatedly told them I wasn’t ready to go home, but they kicked me out anyways. 

Before leaving, I was still feeling sick and having all the same symptoms. Although the hospital said, “they recommended that I continue current antibiotic measurements and that I could do that at home under the supervision of my nurses.” I’m feeling much better now and have been healthy since. I went home with a PICC line (it’s like an IV, but it is a type of catheter to access bigger veins.) It can also be left in for a longer period, but there is a dressing on it and needs changing once a week (mine was by the crease of my elbow.)

One thing that happened this time is I also had issues, although it wasn’t with my wheelchair, but my ventilator attached to my wheelchair. My vent plugs into my wheelchair which charges it and is also like an “external battery” for it. The vent internal battery lasts about 30-40 minutes and when it’s running off my wheelchair, it lasts as long as my wheelchair battery is. At some point at time while I was there, my vent started beeping “low battery,” so we used the plug-in to the wall instead.

Before I went home, I had to have the wheelchair company come to the hospital to figure out if they could fix whatever was broken. He found that the converter box (a black box that the wheelchair battery and ventilator battery plug-in to) was crushed. I’m sure at some point when I was repositioning in my chair, I must have leaned into it. Then, over time the box continued to break down and it chose that moment to quit working. Anyway, at first, he said they would have to order a whole new one, but then she was able to fix it on the spot. About a week later, someone came to my house and replaced the box.

Since being home I’ve been staying low key, writing poetry, getting outside, taking Everette for walks. I’ve also been continuing to go to ABLE whenever I can. Nursing lately has been a little spotty and it doesn’t work to go on days when there isn’t one. The best part about going is learning new things and gaining more movement. I took a video of my latest progress and will share it in a separate post. I'm always amazed at myself and have been told that by others.

If everything works out, I will continue to go there as long as I can. Nothing can stop me from reaching my dreams. Over time I have gained more arm movement and core balance. The one thing that stops me short on some days are my arm exercises. I get major pain in my neck and arm sockets. It could be a combination within the arm exercises and my wheelchair. I’m planning on seeing a doctor about my arms coming up soon.

The most exciting news since my last post is that my sister is due again in October. Now I will be an aunt to 3 girls!

I am hoping to update sooner than 4 months, as my posts have become longer and random. Although every day I’m new writing poems and entering them into contests. I have shared some of my recent ones below. Thank you for your patience.

Jenni

Natures Grace’s

Sunlight dances piercing through cirrus clouds

rays of light shine causing shadows to scream loud,

Like molten cream the sky is full of many hues

emitting molecules scattering violets and blues

Feeling a heaviness lumbering tirelessly through

evergreen trees that stick together like glue,

Strong roots run deep entangling underground,

sending secret messages beneath the loamy ground

As brisk breezes brushes across center retrieves

running its fingers between the crimson leaves

Lifeforms unpredictability like ribbons of sound

breathing in the crisp air from oxygen around

Times when there are changes between seasons,

with lessons at the same time as life’s reasons

Tapestry of nature whispers secrets in the streams

carrying them around Earth’s beautiful bright beams

Crossing an Intersection

At an intersection to cross the street

when the light turns green “what should I do?”

I’m in a wheelchair trying to be discreet,

I wish I could walk when the sign tells me to

There is no wheelchair symbol flashing,

just words saying “walk” or “don’t walk,”

when I see that I just start laughing

there should be a voice that starts to talk

Wondering what people would think,

if there were words saying “roll” or “don’t roll,”

they might get a kick or need to rethink,

maybe they’d get confused or lose control

Figuring out how to have it both ways,

for walkers and rollers lessening the confusion

there could be a custom-built phrase,

saying “cross” or “don’t cross” for inclusion

Who is following me?

Getting smaller as I charge for it,

growing taller as I walk away,

constantly creeping beside me

lurking in my every movement

Shifting shapes in the sunlight

dimming within the moonlight

learning to accept the fact,

that I can’t get away fast enough

Feeling fearful and empty inside,

it always has a hold of my sight,

despite all the dark there is light

behind my shadow to show itself

Fall Update

I will be getting my booster COVID Vaccine, and my flu shot December 1. I also contacted my doctor about getting a new set of x-rays for my left pinky and knee. I’m hoping my hand is all healed up, so I don’t have to wear the brace on it anymore. Also, it’s been a long time since I injured my knee. Last time I got an x-ray of it they told me it was no worse but no better.

I really hope it has at least gotten better because if it doesn’t heal quickly, I’m afraid I’ll lose my place at ABLE. I miss going there, getting some exercise, and making progress. Since my accident, I never thought I’d be able to do as many things as I’ve accomplished since starting the program. It’s important to me that I keep it up, especially because I felt a sense of independence and new strength since I started.

Last Sunday my power wheelchair stopped working. I couldn’t drive it, or re-position and an error code flashed across the screen that I look at to operate it. Based off the code, the company I use for equipment was able to try to figure out what was wrong with it. They thought it was the motor which would take 7 to 10 business days to order a new one plus the time to replace it and get it back to me. They took my wheelchair on Tuesday and left me with a crappy, loaner manual wheelchair.

Although they figured out within a few days that it was just a faulty wire on a control panel. The company was able to bring it back to me Thursday late afternoon. Since independence is so important to me, being without such a vital part of my life was very difficult. Because it wasn’t fitted for me, I was only able to spend roughly 2 hours in the loaner wheelchair on Wednesday morning. Thursday morning, I got up in my shower chair for an hour.

I spent the remainder of the time in bed, trying to reposition as much as possible so I didn’t get sore or uncomfortable. I realize how lucky I am to be able to move about and get out of bed every day. There was a low point in my life when I didn’t want to get out of bed for a few days, because I thought to myself “what’s the point of getting up when I’m just going to get back in bed again?” I’m glad that others intervened and got me out of that state of mind. 

It’s been five years already since I got this wheelchair. That’s the point when insurance will cover a new one, so I am in the process now of pursuing that. It took a year and ½ to get the one I have now after starting the process, so I’m guessing it will be about the same for another one. That’s why I am starting the process now.

Now that I can be in my wheelchair, I’ve been going for a walk and roll outside every day while I’m still able to. The weather is getting colder, and snow is on its way! I do take Brody out in the winter, even if there’s snow outside although only if the streets are clear. Hoping to go more places soon other than just the doctor’s office; it’s just difficult if there are a lot of people around. Maybe the mall is the best place because I can stay away from others.

Even though Christmas is 1 ½ months away, I’ve already been looking for gifts online. I prefer to shop online more than the stores because I can find what I’m looking for easier. The best time for me to order things is on Cyber Monday. Although you never really know how good it is unless you look at prices beforehand! I think Black Friday, especially for someone like me, is crazy. People wait in line for hours to try to get the best “deals” and fight over others. Also, you never really know how safe it is since COVID still exists.

I’m still plugging away at my book. Since starting to write it myself, I think it’s best this way instead of having a ghostwriter. I have found a groove and style of writing that I want it in. Hopefully I will be finished writing by next year and then I can find an editor to help me. It depends on how fast and how much time I invest into it. I believe I already written almost 10 chapters, but don’t know how long the book will be yet.

Jenni

Wheelchair, Standing and Health

The other day the company that helps me with my wheelchair, took it for the morning and worked on it. They replaced my tires and put in a better backrest. Also, they adjusted the seating of it, so it fits me better. They even switched out the display screen that I look at to a more “high-tech”, colorful ne space.

The only problem was that since I don’t have a back-up wheelchair, I was forced to stay in bed until they brought it back to me. It was a good thing that it didn’t take too long to fix it. They picked it up at 8 AM and brought it back to me by 12:30 PM. Even though I wake up around 7 AM, I normally get out of bed by 10 AM every day, so it wasn’t that much longer. I just had to eat lunch while lying in bed, since I usually eat around 11 AM.

As far as standing, I still haven’t been able to do it yet. Although my right tibia is no longer fractured, my left kneecap still slips out of socket. I have a physical therapist comes twice a week. One of those days (so once a week) she puts Kinesio tape on it to help hold it in place. It seems to work well, as long as the tape sticks well. I don’t get it wet when I shower, so that helps.

Hopefully, I can get back at it soon. I think it will help me lose some of the water weight that I’ve gained. My doctors still can’t find a reason why I am having so much edema. I’ve had a few different doctors order labs and done multiple tests. Even though there been many theories thrown out there, none of them seem to be the answer based off results. I have faith that someday I’ll figure out what it is.

Jenni

Update on My Wheelchair

A couple hours after I posted the blog post about my wheelchair, I figured out a way to get outside. I realized that we have power outlets outside around my house. So, I just unplugged my vent from inside and plugged it in outside. It was kind of funny though because Brody would come out with me thinking we were going for a walk. Although he got very confused when I didn’t have his leash and we never left my backyard! 

Also, my vent has an internal battery of about an hour. I ended up going on short rolls with Brody. However, I didn’t feel comfortable going for more than 20-30 minutes. I didn’t want to risk losing power away from my house and a power source.

The following Monday after they said the external box was short-circuited, I called to check-in on the order. They decided to send someone else out to see if they could figure out if there was one other thing they could do before ordering one. Although he checked everything and confirmed that because there was no power going from my wheelchair to the external box, that I would need a new one.

It didn’t end up coming in until Thursday, July 2. That’s when a third guy came to replace it. After doing so, he realized that there still wasn’t power going to the new external battery box. He called someone from the company and together they figured out that it wasn’t the box at all. The problem was that when he changed the two wheelchair batteries, he didn’t hook it up right.

Each battery is 13 volts, and my ventilator needs at least 24 volts of battery to run. When he went to hook the box back into the wheelchair battery, he only hooked it up to one battery and not both. Therefore, it wasn’t getting enough charge. It was such an easy fix for so much hassle! I should have remembered this because the same thing happened last year. Although it didn’t take as long to figure it out.

Well, I’m back up and running now. Lately I’ve just been getting outside every day, although the temperatures have been above 90°F. It doesn’t bother me though. One day when I got inside, I took my temperature and it was 96.5°F even with wearing a long-sleeved sweatshirt. I’m hoping to start getting away from my neighborhood and out to some stores now that they are open.

Jenni

My Wheelchair Fiasco

The other day my wheelchair batteries stopped holding a charge. Even though it was being charged all night, it would run down very quickly during the day. Yesterday, someone from the wheelchair company came out to replace the batteries. After doing so, my wheelchair was working better, and the batteries were holding charge which was nice.

About an hour after he left, my ventilator started beeping battery low. We realized that it had not been charging properly. Usually my vent plugs into my wheelchair battery and charges off that when I’m using it. We thought that when he put the new batteries in, he forgot to hook the cord from my vent into it.

I ended up calling the company and they sent the same person back out to see if he could fix the problem. Upon inspecting it, he realized that all the cords were connected properly. Looking at it further, he found that the lights were not lit up on battery box that connects from my wheelchair and then into my vent. This was concerning, being that the internal battery on my ventilator only lasts about 45 minutes to an hour until it runs out. That’s why I have plugged into my chair; it needs to be plugged in to an external outlet.

Since yesterday was a Friday and about 5:30 PM when he was back out, he said that he wouldn’t be able to order a new one until Monday. He’s going to check to see if they have any rental power boxes that I could use in the meantime. Otherwise, I’m stuck indoors for now until they’re able to get me a new one. I don’t want to risk going outside with only an hours-worth of battery.

Hopefully, I’ll be able to go out soon because it’s difficult for me to spend so much time inside. I’ve already had to self-quarantine this year because of COVID 19. To be isolated and unable to have control over what I do takes a toll on me physically and emotionally. It’s hard because I depend on others for so many things already. I will do a follow-up post after everything gets resolved; hopefully sooner than later.

Jenni

The Universe Reads My Blog

I think the universe was trying to tell me something when I wrote my blog post yesterday. A few hours after I posted it I experienced my own external and internal stressor. It happened when I went to change position in my wheelchair by tilting back. All of the sudden my chair stopped, and I was stuck in a tilted position. My screen that shows drive, seating, speed adjust, profile etc. turned blue and showed an error code saying, “Bad Cable”.

I’ve known about this saying on my chair before and had my wheelchair company check it out earlier this year. They switched out a cable that was being pinched off, but there was still another one that was causing the error code to show up. Despite that, the wheelchair was still working so the company said they would order another cable and get it to me when they could. Then the whole coronavirus issue slowed everything down and they said it would take longer for them to get out here.

Back to my story about yesterday, after I realized that I wasn’t going to be able to move my chair, I called the company and they said they couldn’t get anyone out until Monday! I told them that wouldn’t work because I was literally “STUCK” and that it was an emergency situation. After calling three separate times and talking to three different people, I finally got someone to understand me. He told me that they could have someone come out when they got done with their route (which was about an hour.)

It happened around 3:15 PM, they got to my house around 5 PM and took about an hour for them to switch out the bad cable. So therefore, I was in the same position for almost 3 hours. For anybody that’s a long time but being paralyzed from the neck down, for me I change position using my wheelchair at least every 30 minutes. They still have to change another cable but were able to bypass it for now until they’re able to get it.

I’m just grateful that it’s working. It was a stressful situation physically and emotionally. All I could think about was going back to what I wrote how stress plays a part in our lives. It has happened before, where I got stuck in a tilted position, but hopefully that won’t ever happen again.

Jenni

The S-Pod

My wheelchair that I have now (received in August 2016) has many features on it. I have blogged about how it has the capability to stand along with elevate, tilt and recline. Although since I’ve been having problems with my knees, I haven’t been able to stand. Not standing has caused some uncomfortableness within the rest of my body and I’ve still been retaining fluid.
 



Although as new technology arrives, I’m reminded of how many changes in society we go through. I received an email about "Segway’s new self-balancing vehicle". It doesn’t require you to stand up like their self-standing one. "Dubbed the S-Pod, the new egg-shaped two-wheeler from Segway-Ninebot is meant to let people sit while they effortlessly cruise around campuses, theme parks, airports, and maybe even cities."

It also has a 24 mile an hour mile an hour speed limit. I thought this was a great new, invention especially because it is shaped like a wheelchair. It seems like someone who needs to sit all the time could also use it.

Jenni

Update on My Daily Life

Lately I have been in a routine during the day. Despite the fact that it’s the end of November already, it’s been really nice outside. I try to get out every day; Brody loves the exercise and I love the weather. The other thing that I have been doing every day is standing. Now that I have my new wheelchair, it allows me to stand at will.

Having the freedom to take ½ an hour to an hour to get on my feet makes the world of a difference in my body. I have to make sure to monitor my blood because having a spinal cord injury it has a tendency to drop. As long as I stand at the right time during the day, it’s usually okay. Since writing my last blog post about standing in August when I received my new wheelchair, I’ve been able to go up to 90° without having to stop in between.

One thing that’s different throughout this year is that my body has been retaining fluids. This causes my body to be puffy, and gain weight as well. I have what is called edema in my extremities. Edema is swelling caused by excess fluids trapped in your body’s tissues. It’s more noticeable in people’s arms, hands, legs and feet (which is what I’m experiencing).

Mild cases may result from sitting or staying in one position for too long or eating too many salty foods. It can also be an effect of blood pressure medications which is what we initially attributed it to. For a while I was on two separate ones which make my body retain fluids to keep my blood pressure up. Despite weaning myself off the one that gives me the most symptoms I am still having this issue. There are meds called diuretics which completely drain tissues of fluids, although if I stayed on them long-term it would make my blood pressure drop significantly.

Other than the edema, I’ve been pretty healthy. I haven’t had any trach or bladder infections all summer or fall. This is the first year that my body has been that way and I believe standing has helped me be able to move my secretions better. I’m also using an antibiotic nebulizer where I do it for one month off, on for another and so on.

Jenni

Overdue Update

People keep asking me why I haven’t blogged in so long. I used to do it almost every day or when I had a chance. It gives me great joy to write and share my story along with get my feelings out. My blog is kind of like my diary in a way. I’ve definitely thought about taking all the posts I have written and creating a book using them. Although, to be honest even if I start one it’s been difficult to finish a blog post because I get distracted or lose my thoughts. Sometimes I’ll go back to the same one I’m writing multiple times before posting it.

 

Another reason why it’s been hard is because I have a lot of other things going on in my life right now. Here’s an update about myself and the things I’ve been doing. First, I haven’t been getting out as much as I used to. I am usually able to take my dog, Brody, out for a walk and roll just about every day as long as it’s nice out but that’s about the extent of it. There are different issues that hold me down as well.

Getting infections is no fun, especially in my situation. As I stated in other posts, last year I unfortunately got pneumonia five times, a couple of them that actually landed me in the hospital. Then, earlier this year I had bouts of pneumonia a couple times that held me back from doing things. It seems that I’m constantly dealing with these chronic infections tying me down, where I am unable to do things like I wish. On a good note I haven’t had a respiratory infection since February now!

As far as family goes, my mom underwent reconstructive surgery on Monday the 24^th. She was diagnosed with colon cancer a couple of years ago and as a result went through chemo and radiation. Good news is all the cancer is gone although the chemo and radiation damaged tissue. This is the reason why she needed to reconstruct the tissues that were damaged. Everything went well and after she spends a week in the hospital, she’ll then come home and be in the recovery process.

On a separate note, 2 posts ago I talked about my new wheelchair I was supposed to get. Unfortunately, it still hasn’t arrived yet. It’s now due to be delivered within the next week or so. They’re waiting on a cord that connects my ventilator to the wheelchair for power. I’ve been in the process of trying to get it for over 1 ½ years. It has the capability to stand, allowing me to take pressure off of my body. Constantly sitting isn’t easy and in my current wheelchair, I’m always in pain and have muscle soreness due to lack of repositioning along with strength. I also think it has to do with the way the chair is wearing down; I’ve had it since 2010.

I started using the Easystand Evolv standing frame in 2008 because of the health benefits it gives me. Having my new wheelchair will replace needing to use the standing frame. One thing I have to watch while standing is my blood pressure. It frequently drops and sometimes gets so low that it doesn’t read on the blood pressure cuff. It’s been a constant issue on a daily basis. I’m on two different medications to help raise it although they don’t always seem to do anything. It’s with hope that standing every day in my new wheelchair will help with this issue.

It’s even more vital that I get my new wheelchair as soon as possible. Monday I was outside with Brody and accidentally ran my wheelchair into the curb. I busted my front right wheel so the rubber is split in half. Although there is a gap, we were able to duct tape it to keep it together so I can at least roll in short distances. I was stuck indoors until someone was able to come out today and fix it so I can start getting out and about more often. When he looked at my other tires, he said that if I don’t get my wheelchair within the next few weeks, I need to have them replaced. This is because they have worn down to the point where I could start damaging my rims.

That’s all for updates now, but as far as my wheelchair goes I will definitely keep you posted!

Jenni

In the Clear

After being diagnosed with pneumonia a few weeks ago, I'm finally in the clear. There were a few ups and downs where it got better than worse, but luckily they removed the PICC line last week. I'm still on extra antibiotic nebulizers to make sure it stays away. The good news is I'm feeling much better. The IV antibiotic was 3 times a day so I was unable to go many places because of having to give it during the middle of the afternoon.

Due to my lack of updating, I never informed about receiving a new wheelchair back in December 2015. It has the ability to stand, so I won't have to transfer into my Easystand stander. Although because of being sick and hospitalized throughout 2016, I've been unable to utilize it. In between hospitalizations and then again towards the end of last year, I was doing therapy at Gillette using my stander in order to tolerate standing again.

I had to stop for about a month due to this last illness, but will be starting up again this week. I'm determined to start using my new wheelchair as soon as they get it all adjusted. Another thing that's been holding me back from getting out a lot is pain. Some is caused by positioning and other is from the underlying condition of having a spinal cord injury. No amount of medication helps to relieve it either which can be frustrating.

Being paralyzed from the neck down is difficult, especially when it causes me to be uncomfortable in my own body. It's not easy to sit in one position for a lengthily amount of time, so I'm constantly needing range of motion or some sort of movement. That's where the freedom of being able to stand will be nice comes in once I'm able to utilize my new wheelchair.

Despite being sick I was so positive that this year would bring me luck. Too bad respiratory infections tend to get the better of me. I'm hoping to steer clear for now and be able to enjoy these days without sickness. The one benefit is that the weather here in Minnesota has been extremely nice and I have been able to get outside to take Brody for a walk/roll. We both enjoy a little bit of sunshine!
 

This picture was from November 2016. The trees are bare now and there is a little bit of snow on the ground. I still have to bundle up by wearing warmer clothes, hat, scarf and a blanket!

Jenni

Word on My Wheelchair

For those of you following my wheelchair situation, here's an update.

Right now I'm just waiting on the order and letter of medical necessity from my doctor; I already received one from my physical therapist. Once it comes through, then Key Medical can submit those letters and the tentative order to my insurance company. As soon as they deny it (we already know they will because I have capped out on my medical equipment), then it can be submitted to Medical Assistance (M.A.).

M.A. has 30 days to either accept or deny it. If they accept it, then they can order it and it should take about two weeks after that. If they deny it, we can resubmit it but then M.A. has another 30 days. If they keep denying it, which is unlikely, then we can try to fight it. Hopefully, M.A. will accept it right away and then the ordering process can begin. That would be the ideal situation.

Another month or so doesn't seem quite that long, considering the length of time I've already been waiting. I think I've been through enough this summer and I'm ready for things to start going my way and to be back to as close to normal as possible.

Jenni

Wheelchair Trial

On Friday Key Medical brought out two wheelchairs for me to trial. One of them had a chin joystick and the other had a sip and puff. After getting so frustrated a few weeks ago when I tried the sip and puff and couldn't get it, I decided I wanted to try the chin joystick to see if I would like it. They brought out both ways to drive it so that I could compare the two and figure out which one I wanted to use to drive my new wheelchair.

I tried the chin joystick first. It's just like a regular joystick for a wheelchair; you push it forward to go forward, back to go back and so on. You have to keep pressure on it the whole time otherwise if you let go the chair stops. That means it's in an unlatched mode. As soon as I started I got it down right away. It was really easy. I was able to navigate through the door outside, down the sidewalk and around the driveway to the side of the house. I practiced for about 20 minutes; trying to learn everything I could about it.

After trialing that chair, I transferred into the chair with the sip and puff. I was a little hesitant at first since I had so much trouble with the last time, but I kept an open mind because I didn't want to give up on it. To my amazement, it took about two minutes for me to get it. Just like the chin joystick I was out into the side of the house in no time.

The sip and puff is also known as a breath control, although you don't actually use your breath to control it. You use pressure to puff into it and sip, just like you would a straw. Depending on what you do depends on which way you move. After trialing both I decided that I liked the S&P better. The major reason why is because like I said before with the chin joystick you have to keep constant pressure on it. When using the S&P, it can be set in a latched mode so you can give it a hard puff to go forward and it will just go. It can also be set on an unlatched mode where you have to continuously puff into it to get it to move, but after a while that gets really tiring and my cheeks would hurt. It was a good thing that they brought out both chairs and gave me the choice between two options instead of just one.

They let me keep the power wheelchair with the sip and puff to trial until this Friday. There's just one problem with this chair and that's that it's too small for me and extremely uncomfortable. I lean to the side because there is no support. I've used it Friday, Saturday and Sunday so far. Today I went into my old power wheelchair (the one that doesn't work) to give my body a break and some support.

Tomorrow I have a doctors appointment at Gillette to get Botox injections in my neck and shoulders again. I'm going to use the trial chair to go there because I want to see how I do with it out in public. I'm kind of nervous right now because if something happens with the chair I'll be stuck out somewhere. It should be okay though because the guy from the company is going to meet me out there to help if I need anything, which is really good. After tomorrow I don't think I'll get in it again because it causes me too much pain.

I should be able to get my new wheelchair ordered by the end of the week. I have to make a few decisions still before that can happen. I'm not sure yet as far as the timeperiod on when I'm going to get it. The wheelchair has to be approved by medical assistance first, and that could take a couple months. I will keep you updated as I know more.

Jenni

Getting Independence Back

The most valuable thing to me to have in my current situation is independence. It is something that is extremely hard to get once you've lost, so when things come along that can help that I hold onto them. When I finally get it back and then lose it again, it can be frustrating and saddening. Losing the ability to drive my wheelchair myself has been extremely tough. Right now I'm in the process of trying to figure out which way I'd like to use to drive a new power wheelchair.

On Tuesday Key Medical brought me a power wheelchair with a sip and puff to trial. After telling me how to use it, I tried it out for the first time in my room. It was not at all like I expected; harder actually. I tried it for a little while, got tired and sore cheeks, and was extremely frustrated that it wasn't going my way. It would have been easier to try it outside or something in a bigger space, but it was extremely hot and humid outside. At first they said that they were going to take it back with them when they left. I said no because there's no way I can know after an hour if it's going to work or not or if I like it. I was able to keep it until this morning at around 10 AM. I'm extremely surprised that they wouldn't do a longer trial period.

Yesterday I took it outside to mess around with it. After a while, I started getting the hang of it but was still frustrated. I know it takes a while to get used to something and learn it, but I just felt like no matter how long I tried it, I was never going to get it. I want to say that I loved it and that that's what I want to use, but I am unable to. Without something else (besides the tongue touch) to compare it to, I just don't know if it would work out for me to use. So I talked to them today and they are now going to try to get a wheelchair with a chin joystick for me to try; although I'm not quite sure how long that will take.

After I choose which of the two ways I want to use to drive my wheelchair, then they can begin the process of ordering it. It will probably take a couple of months before medical assistance will approve to pay for the chair. Only after we go through this entire process can I begin to get my independence back. I'm hoping and praying that everything works out okay and then it can be as quick of a process as possible.

Jenni

Good Things Do Come

I found out I received a 93% (A) in my online mass communications class that I just finished up. Definitely better than I thought I was getting. I'm really proud of myself for sticking with it and not giving up. For fall semester, I signed up for intercultural communications at Normandale and environmental biology online. It's going to be interesting taking two classes; I have a feeling it will be a lot of work again. Hopefully I'll be able to handle it.

I got word from Key Medical on Friday. They're going to bring out a loaner power chair on Tuesday for me to try. It's going to have a sip and puff on it. I'm not sure how long the trial period is for; hopefully until I can get a new one. I'm so excited to get out of this manual wheelchair and get a little independence back. Now I just have to learn how to use it. Wish me luck!

Jenni

"There are two big forces at work, external and internal. We have very little control over external forces such as tornadoes, earthquakes, floods, disasters, illness and pain. What really matters is the internal force. How do I respond to those disasters? Over that I have complete control."
-Leo Buscaglia

"This Too Shall Pass"

It's been an extremely busy past six weeks. My online class has required all of my time and energy. I've been stressed to the max and I'm glad that all I have left is my final exam, which I can either take the 15th or 16th. Then I will be able to relax and enjoy the next six weeks before I start with fall semester.

I'm still waiting to hear about getting a new wheelchair. Right now they are trying to get a loaner power wheelchair with a sip and puff attached for me to trial. Along with the stress of my class, I've been dealing with the loss of independence. I'm still in a manual wheelchair right now that I'm renting. Not being in a power wheelchair and able to drive it myself has also taken a toll on me. I feel myself getting more depressed each day and not wanting to do anything. It's hard to go anywhere anyways in this situation. None of my equipment that I have to bring out with me when I go places fits on this chair like it used to on the other one. My vent is literally hanging on one of the handlebars and my tubes are tied to the other one. The suction machine, oxygen tank, and emergency bag have to be carried by someone else. Along with someone pushing me, that's a lot to deal with.

Hopefully "this too shall pass."

Jenni

My Situation Now

I've been extremely busy lately with homework for my class. It's a lot of reading in a short amount of time. Luckily, I've been keeping up. I only have three more weeks until the end.

My chair situation is still the same. I haven't been getting out like I usually do because it's more of a hassle with this wheelchair. There isn't any built-in places for things like there was on my old chair. Everything is just kinda piled on; my ventilator is hanging on the handlebar and there is no place for the humidifier so I'm going without. Hopefully things will change soon, but for now this is what I'm dealing with.

Jenni

About My Wheelchair...

Okay, so I have some news on my wheelchair. Unfortunately, they are not able to fix the problem. My wheelchair is officially dead. At this point, I'm okay with the fact that I'm going to have to get a new one. Since New Abilities went out of business and I'm going to have to find another way to drive my wheelchair, it does seem logical just to start all over. However, this means no wheelchair until however long it takes to go through the process of getting one.

I was able to get a rental manual wheelchair from a different vendor, called Key Medical. It is 10 times more comfortable than my manual chair and a lot more supportive; I fit in it perfectly. I talked to the manager at Reliable Medical where they have my wheelchair and he said that they could put a tilt mechanism on it. That way I can be in my wheelchair until I'm able to get a new one. The only thing is that the power isn't working to drive it so someone would have to push the chair, which weighs about 450 pounds with me in it. The manual wheelchair that I'm in now is a whole lot easier to push and maneuver around. I'm not sure which one I want to be in for the time being; I guess I'll have to decide when they deliver mine back to me.

I'm tired of dealing with Reliable because ironically their very unreliable when it comes to things. I'm going to go through Key Medical to get a new wheelchair. They're coming out next week to do an evaluation. After that they'll start the process. I think I'm going to try the sip and puff first. Hopefully it won't take too long.

Jenni

Hanging in There

I'm still in my crappy old manual wheelchair. I had my mom drop off my electric wheelchair at Reliable yesterday. Good thing too because it was something they couldn't fix right away so they had to keep it overnight. I was just going to go there, but I'm glad I didn't. I called today and the guy said that they might be able to deliver it back out tomorrow so we don't have to pick it up. Hopefully they will be done with it by the end of today.

I'm so uncomfortable in this wheelchair. There is no support and my back and neck are sore from sitting in it. I've been having to change positions a lot to keep from hurting too much. I definitely hope that tomorrow will be the last day I have to use it for a long time. I've been kind of depressed the past few days being in a different wheelchair and without independence. I haven't gone anywhere out of the house at all because I just don't feel like going anywhere in this contraption. Someone has to push me and I don't like that at all. Plus it's raining outside today which makes me even more depressed not be able to go outside. Anyways, I'll keep you updated on what happens.

Jenni

Finding Independence

A week ago I went to Gillette Lifetime clinic in St. Paul for an occupational therapy appointment. My plan was to see if they could help me find some things that could make me more independent.

The first thing we talked about was an automatic page turner. A switch could be attached to it that I could push with my cheek or chin to turn the pages. I picked one of two options that I liked. I didn't realize it but page turner's aren't cheap. It would cost a little over $3000 for it. The other one was almost twice as much. I'm sure I could get an outside source to pay for it. It would be great for my school textbooks. I've tried reading books on my computer before but it's just too difficult. It hurts my eyes to look at the screen for too long. I also thought about a portable e-reader such as the Amazon Kindle or nook from Barnes & Noble, but someone would still have to push the button to turn the page. They don't have anything out there like that that's voice-activated or able to operated by a switch.

The second thing I looked at was an environmental control unit that can be activated by any type of switch. When I was there, I found out I could operate it by a switch using my left thumb. The only problem is that my hand doesn't always cooperate and if it's tight, I'm unable to move it. The other option is to mount the switch to my wheelchair and have it come around to my cheek. I could then push my cheek out using my tongue to hit the switch. That's probably going to be the best option.

Sadly, New Abilities, the company that I got my tongue touch keypad from, went out of business. Apparently it happened last summer. I received a letter from them at the time that explained this but when I called, they denied it. I'm guessing they just wanted people to keep sending them money because they didn't have any funding left. When I was at Gillette, the OT confirmed with me that they weren't in business anymore and that they had called telling them not to refer anyone.

The third thing we talked about were other options for driving my wheelchair. The three that could possibly work for me would be a sip and puff, a chin joystick or head control. I need to call another company, Reliable, to set up an appointment to go over this further. I think I might try the sip and puff first because I've tried the chin joystick before and I don't think I want that and also I don't have much head control so that way might be hard.

*Note: Wheelchair Troubles-I wrote this post a few days ago but hadn't published it yet. Two days ago my electric wheelchair all of a sudden stopped working. After looking for a while, we found a cord that had been pinched and had exposed wires. That's the reason the electric part in the chair went out. It is able to be moved manually, but it is very heavy and hard to move. Also, the tilt and recline mechanism is out as well. The last two days I've had to use my manual wheelchair. It is the most uncomfortable thing to sit in; I don't know how I did it for 3 1/2 years. I'm going in to reliable medical tomorrow so they can hopefully replace the cord. Then I'm going to talk to them about other options for driving my wheelchair.

Jenni