Friday, April 30, 2021

Donating My Hair

The other day I got a well needed haircut. It was a couple inches past my elbows. The last time I got it cut was almost a year to date. Last year, I wrote a post that said that I was going to get 10 inches cut off and donate it to locks of love. It was down to my elbows at that time. Although I ended up just getting 4 ½ inches cut off. This time I got 10 inches cut off and have yet to send it in to locks of love. It will be my fourth time doing it.

The last few times I’ve donated it, my hair afterwards was above my shoulders. This time, my hair was so long that it’s still shortly below my shoulders. It’s so thick and healthy now! It always seems so short once I get it cut, but my hair grows so fast. I always need to remind myself that it’s just hair and it will grow. Also, that I am doing it for a good cause.

Alopecia areata, cancer radiation therapy and severe burns are just some of the reasons why someone could lose their hair. And hair loss is not just a cosmetic concern-it can also seriously affect someone’s mental health. Hair donation gives people a chance of high quality, free, natural hair wig for free. It can also help someone restore emotional balance and regain self-confidence.

Locks of love is just one of the organizations that accept hair for donation. Some places require 12-14 inches or more of hair, but most require a minimum of 10 inches or more. There are some that only require a minimum of 8 inches or more. I like to do at least 10 inches because I have the stylist layer my hair, and when you donate it, they separate the longer and shorter pieces. Locks of love requires 10 inches or more. Also, if you send it in yourself, you get a laminated certificate saying you donated.


Monday, April 19, 2021


Now that COVID vaccines are available, I feel more comfortable getting back out into the world. Before, I was so worried about getting the coronavirus, especially in my situation. It’s such a big risk being on a ventilator if I were to get it, that I was avoiding most people, especially crowds. I’ve been staying home most days (except for my daily walk and roles with Brody).

My nurses are still required to wear masks, even if they are fully vaccinated and I am too. My nursing agency is going by the state guidelines and until they hear anything otherwise, N95 masks and shields are required. It will be interesting if, and when they tell people they don’t have to wear masks anymore. I doubt it will be anytime soon though. It’s difficult for me to wear a mask because it’s hard to see my screen on my wheelchair. Also, since I use a sip and puff to drive it, I need to put a hole in it in order to use the straw to drive.

Good news is studies show that at least 50% of eligible Minnesotans have at least one dose of COVID 19 vaccine. And now that the governor has opened it up to 16+, even more people are signing up. It also means that spots are filling up, and there aren’t many appointments available. That’s why I had to get mine done so far away. My second dose is this coming Friday and then I will be fully vaccinated!


Sunday, April 4, 2021


On Friday I had my first dose of the COVID vaccine. I ended up getting the Pfizer one which is two doses. My next one is scheduled for three weeks from Friday. I set the first appointment up about a month before it, and the only place nearest to me that had availability was regions hospital. Regions is in St. Paul which is about 30 minutes away from me. It’s actually connected to Gillette Children’s Hospital; that is where I spent over five months after my accident. Good thing is I didn’t have any side effects from it.

A couple weeks ago, I ended up with a respiratory infection. The reason I knew I was sick was because I had to constantly be on oxygen (I’m usually on room air). Also, my nurses were suctioning me more frequently and my secretions were colored. They were able to determine that it was 50% staph infection and a mixture of a couple other infections with a sputum culture. I was put on an antibiotic for 10 days and it’s all cleared up now. I’m glad that it wasn’t anything bigger than that being how sick I felt.

One positive thing is that since I’ve been off my seizure medication (Depakote) after my recent hospitalization, I’ve noticed some significant loss of water weight. It’s pretty much everywhere, especially in my face, arms, legs and stomach. My hands are where you can see it the most. They used to be super puffy and have a lot of pitting edema. Pitting edema is something that I had a lot of in my body. It is when a swollen part of your body has a dimple (or pit) after you press on it for a few seconds.

I’m so happy that it’s helping me, and it’s only been a few weeks. I can’t wait to see how much more I will lose down the line. It will be a huge transformation for me. I still have a video appointment with the nephrologist soon to talk to them about how I’m doing since being off the medication. I’ll be glad to report the good news to them.

For Easter today my sister, her boyfriend and my new niece came over to visit. I can’t believe that she is now five months old! My other niece is now seven years old. I love being on an aunt because I get to be the fun one, I get the distinct honor to spoil them, and they can come to me for advice. I’ve also always loved having aunts for the same reasons.


Thursday, March 25, 2021

Past Pets and Moves

When I was born, my parents had a Springer Spaniel named Corky. Unfortunately, when I was a year or 2 old, he was in a car accident. It led to some complications later, and he ultimately passed away. I don’t remember much about him; I just have pictures of him and me when I was a baby. He was my first introduction to dogs. My parents also had a couple of hermit crabs that lived on the kitchen table. That was when we lived in Grand Forks, North Dakota.

We moved to Minnesota in 1993 into a duplex, when I was 7 years old. I started school here going into 2nd grade. About a year later we moved a couple blocks away into a house. That's when the pets started to come in the picture. I was in 3rd grade and 9 years old, when we got a cat and named him fluffy. We also got a lop-eared bunny rabbit we named Bo (short for Bojangles). I remember that both me and my sister had gerbils that we kept in our rooms. Mine was named snowy and it was albino (white), and my sisters was named stormy (Brown).


When I was in third grade, my parents got a divorce. My mom, sister and I lived there for another year and when I was going into 4th grade we moved into apartment. Unfortunately, they didn’t allow bigger animals, so we had to give both our cat and rabbit away before moving. Also, at that point my gerbil had died but my sisters was still alive, so he moved with us. While living in the apartment, we had a painted turtle that we named lightning. Both of us each had one hermit crab with painted shells as well. The turtle and crabs didn’t last very long.


We lived there for 1 ½ and then moved into a duplex. Although we wanted other animals at first, my sister and I settled for a beta fish, one for each of us. Then, my sister got another lop-eared bunny rabbit that she named Isabel (Izzy for short). At age 10, I got a ferret that I named Neke and I had him until he died at the age of 8. My accident was when I was 16 years old, and while I was in the hospital my mom and sister moved into a townhouse, one that was listed as handicapped accessible. I remember them bringing Neke to visit me while I was doing my rehab therapy at the hospital.

Rio (yellow) and Cole (gray)
In the beginning of 2005, we moved into the house that I live in now. It’s been completely remodeled to my every need. While living here so far., we’ve had 3 parakeets (first was Dakota; after him came Cole and Rio) and 2 cats (Ty and Toby) all of which passed at some point. Then, in September 2012, I got my dog Brody at 9 months. On December 20, he turned 9 years old and has been my buddy ever since. Every animal that we’ve had, I’ve learned responsibility, gained more compassion, and felt the love in return. I’m sure in the future there will be more pets and possible moves to come.

Toby and Ty



Sunday, March 21, 2021

Recent Hospitalization Due to Fluid Retention

 At the beginning of the month, I got Botox injections in my neck again. I’ve talked about getting it in the past, and how it’s benefited me. I do feel a difference once they give me the injections. My muscles get looser, I’m able to move my head more and I don’t have as much pain as usual. The downside to getting Botox is that I need to get it every three months for it to be effective. Also, for me, my neck gets tight so quickly that it only really lasts about a month.

A few Thursdays ago, I had a video appointment with a nephrologist. Over the past couple of years, I’ve been talking to several different doctors with all types of specialties, trying to figure out why I have so much edema (fluid retention). Most of them have narrowed it down to one problem, low albumin. Here’s a definition of how low albumin causes edema. 

“Proteins in the blood tend to pull water into our blood vessels (acting like a "water magnet"). When the level of protein in the blood is low, water may leave the blood vessels and collect in the tissues. Water in the tissues is called "edema".” I’ve done multiple tests that look at where I might be losing protein, since I eat enough of it and also drink a protein shake a day. There is medication that you can take to help raise it, but I haven’t gotten to the point yet.

One way to shed the water from my tissues and help with edema is to take potassium-sparring diuretics. They are designed to help reduce fluid levels in your body, without causing you to lose potassium, an important nutrient. Although one side effect to going on a diuretic (otherwise known as Lasix) is that it can cause low blood pressure. In fact, many people take it to lower their blood pressure as they cause your blood vessels to relax.

Unfortunately, due to my spinal cord injury, I have low blood pressure. I’m actually on a medication to help raise my blood pressure, so going on Lasix is a huge risk to me. Although the nephrologist that I spoke to said that since I basically tried everything to help get rid of my edema, she would want to see how my body would react to me going on some sort of diuretic. In order to do so, she wanted me to go into the hospital electively and they would be able to monitor me closely while attempting to shed all the fluid in my body using diuretics through an IV.

They happened to have availability a week after my video appointment for me to go in and I would spend at least three days, if not more, to help achieve this. Afterwards, it would almost be like starting fresh, with little to no edema and she could see if I gain it back, how long it takes, and then figure out an action plan from there. I’m excited but nervous at the same; I want it to work, but I don’t know what side effects I’m going to endure. 

**The beginning post was written the day that I went into the hospital, but I never got a chance to post it. Here is an update after being in the hospital.

Upon arriving, I was admitted to a floor that specializes in nephrology. I also met with neurology, cardiology, internal medicine, endocrinology, infectious disease, pulmonology, urology, and the general doctors on the floor. Each doctor looked at different parts of my situation to try to rule out what could be causing the swelling.

As each day was passing, they became closer to narrowing it down to what it wasn’t and what it could be. I spent a total of 12 days in the hospital, more than I expected, but enough for them to narrow the problem down to two reasons. One would involve neurology, and due to one of my seizure meds and the other involve cardiology, and due to a rare condition.

They took me off one of my seizure medications called Depakote and wanted to follow-up with me after a few weeks. This would be to see if it would help with me losing some of the water weight. After being off it for a few days now, I think it’s helped a little bit. I noticed that I’ve been peeing a lot more, which is a sign that I’m losing fluids.

If this doesn’t work, then the only other thing they narrowed it down to is a rare condition called capillary leakage otherwise known as Systemic Capillary Leak Syndrome. It’s when fluids or plasma leaks out of your capillaries into your tissues. It results in low blood pressure and can be dangerous, if not treated. The reason why it’s so rare is because there are not very many known cases of it and there is no known cure.

I’m hoping that it’s just my seizure medication and not the latter. Although since being off the medication, I have seen an improvement in my weight, so that’s a good sign already. I will keep you updated as time goes by.


Saturday, February 20, 2021

Continued Post

After the first day of standing again, I stood 10 more times for 30 minutes each out of the next 11 days. Although, on the evening of the 11th day when I got back into bed, I noticed that my left knee started hurting again. Each day since then, the pain has been off and on. Because of it, I've had to hold off on standing again.

There have been many of those days that I haven’t been able to do range of motion again because of it. I think what happened is that I may have pushed myself a little too much. I guess I was so eager to stand again after not doing for so long. Also, it felt great while standing and helped aid in changing position during the day along with fluid retention.

I’m thinking that the cortisone shot in my knee did help this time, since I was able to stand so many times afterwards. One unfortunate thing about cortisone is that there is concern that repeated shots might damage the cartilage within a joint. Doctors usually limit the number of cortisone shots into the joint. It’s typically shown that you shouldn’t get them more often than every six weeks, but no more than 3 to 4 times a year.

Other than staying off my feet, I have also been staying indoors most of February. The weather has either been below 0°F or in the single digits for a few weeks now. It’s not ideal whether for me to be outside, as my tubes can freeze, and my body can’t regulate its temperature. Today was 25°F and I was able to take Brody for a quick 15 minute walk down a couple streets. He was so excited to go and then crashed on the couch when we got back home. I haven't seen him like this for a while; he must have really needed the exercise.

Over the past couple days I created another abstract painting. It looks pretty similar to a lot of my other ones, only with different colors. I've been doing more smaller pieces, as it takes me at least an hour to get one done and my neck gets sore when I work on it. I posted a picture below.


Friday, February 5, 2021

Standing at 90° Again

Almost 3 weeks ago, I got a cortisone shot in my left knee to help with the pain after injuring it again. I had gotten one before when I first injured it 2 years ago, but it didn’t help. I thought I’d try it another time to see if it would work. My doctor told me it would take about 2 weeks were to take effect; but I felt relief after one week. Recently, the pain started coming back, but only when my leg gets twisted a certain way or if my knee is touched in a certain spot.

When I saw the orthopedic knee doctor to get the cortisone shot, I asked him about standing. It’s been over 2 ½ years since I’ve stood in my wheelchair, all because of my knees. He said he doesn’t see a reason why I shouldn’t be able to stand, unless I was in a lot of pain while standing. I was under the impression by the previous orthopedic doctor that I saw that I shouldn’t stand. To me, this was great news!

A few days ago, I tried standing. Within the first 2 minutes, I made it all the way up to 90° for 30 minutes. This is amazing news, considering I’ve been holding off on the off chance that something could happen to one of my knees while standing. Even better, I have been standing every day since for 30 minutes since. I check my blood pressure about every 5-10 minutes just to make sure it’s not dropping.

There are a lot of benefits to standing for someone with a spinal cord injury, especially in my situation with such a high-level injury. Standing is the ultimate pressure relief because it helps prevent pressure sores and promote skin growth. It also stretches hamstrings and other muscles which results in less muscle spasms. It helps with stabilizing blood pressure, reduces extra fluid in the body, bowel and bladder function, increases overall well-being and enhances quality of life.

Although it gives you more stamina and aids in better sleep, for me it’s like doing a full workout, so it wears me out and I can get really tired. I’m definitely going to continue trying to stand every day for at least 30 minutes. I’m glad that I decided to try it again!


Thursday, January 28, 2021

Choices in Life

Life is made up of an endless number of choices. Most decisions, such as what you’ll eat for the day, are small and only slightly influential. It’s the big decisions-the ones that will change your life indefinitely-that are difficult to make. Every choice we choose can impact our life either in a good or bad way, it helps form us to find out who we are to ourselves and to other people.

When thinking about the occasions that I had to make big decisions, it was after my accident. The number of times which I had a hard time accepting my new normal was less than a handful. It helped that I had support from friends and family. I also had a positive thinking that things were going to be okay despite what happened to me. 

One occasion in which I had a difficult time was when I said no to getting out of bed for a few days in a row. I just wanted to not deal with all the "stuff" that I normally do every day. It took my mom to literally get me out of bed, despite me saying no, for me to realize how important it is for my mind and body to be in different positions. It was after that where I told myself that from then on, I was continually going to have to make decisions, good or bad, and choose how I wanted to live my life.

Also, since I went back to school the year after my accident, I was forced to be around a bunch of people, including the same peers as before. It did make it hard at times to adjust, but I would always tell myself that I'm in it for the long run, even if I didn't always believe it at the time. It helped me cope with those difficult situations and breakdowns. I know not everybody in this situation has the same feelings or ability to adjust their thinking based on what others tell them or what they tell themselves. 

As far as what I would tell someone in my shoes, I would start off by asking the question "what motivates you to get out of bed every day?” Maybe it would get people thinking about their life and what they are thankful for. We all have choices in our lives, and I think the biggest one of all is whether to walk away or try harder.


“Choice is the most powerful tool we have. Everything boils down to choice. We exist in a field of infinite possibilities. Every choice that we make shuts an infinite number of doors and opens a number of infinite doors. At any point we can change the direction of our lives by a simple choice. It is all in our hands, our hearts, and our minds.” -Anonymous

Sunday, January 10, 2021

Hello 2021

This year so far started off a little rough for me. About a week and ½ ago during physical therapy I re-injured my left knee. I wrote a post last year where I stated having pain in that knee starting in 2018. I got an MRI on it in January 2019 and found out I tore my MCL. Although it healed, I was still having slight pain off and on, so I’ve been unable to stand. Injuring it again has caused me even more pain, and I’ve had to start wearing my knee brace again.

Also, I ended up developing a respiratory infection and got on some antibiotics this past week. I haven’t had one for quite a while, so I was surprised when I started feeling signs of it. For me, my secretions get thicker and discolored, I require oxygen (normally I’m on room air) and I need to be suctioned more frequently. Being on antibiotics messes with my body, and I end up having more problems that I don’t need.

The other hard thing is that since I need to be careful because of COVID, I haven’t been going out to places like usual. It doesn’t help that it’s January, cold outside, and the streets are full of snow so I can’t take Brody for a walk. Good news, I started up my Bible study group on Wednesday and that’s been keeping me busy. My other one starts this Monday.

Hopefully by next month everything will start to go uphill and not be so much of a downer. I know God doesn’t give me challenges in which I cannot handle. Even though He gives me tests every so often, I remain positive knowing that I am still here for reason!


Wednesday, December 30, 2020

Poems about Life Struggles

Life Is Precious

The gracefulness

of a butterfly,

how gentle,

and fragile they seem.

Gently fluttering,

on a calm summers day,

floating like,

a dream.

But sadly,

their time is over,

Hardly before it’s begun.

So enjoy

your special moments,

like a butterfly,

in the sun.


The Roller Coaster Life

We are just in a whole crazy,

Perplexing roller coaster ride;

When we have problems,

We are at the downside.

But sure, the time will come

When with the sky we’ll collide;

Where the good feelings came

And the pain will all subside.

So when the time comes

 you are going to fall;

You should always know

That He’s the one to call.

Eventually, you’ll soar up;

The wheels will start to roll;

‘Till you reach the peak,

and You’ll be standing tall.


Past, Present, Future

Our past we can’t recapture.

It’s over and it’s done.

No way to recover time;

All those days are gone.

No amount of coloring

painting with bright hue

can change the way things happened.

No way to make it true.

No use fretting over

Regretting bygone days

No need to get entangled

In memory’s purple haze.

Or caught up in unraveling

( or, of hoping we could do )

things that didn’t go the way

that we would want them to.

The future is uncertain

No way for us to see,

the things that tomorrow’s holding,

for you or for me!

NOW is what’s obtainable,

just moments here to share.

The future comes so quickly –

unseen but waiting there.

Seize the present moments.

Grab all we can contain!

Our future are elusive.

Our past we cannot chain!

-June Kellum