Update

Things have been going great at ABLE. After only seven weeks of intense working out twice a week, I now can sit on the side of the mat unassisted and move myself side to side and back-and-forth (almost like a sit up, only not while laying down). Also, if someone pulls my right arm forward on my armrest, I can pull it back by myself. These are all new things that I couldn’t do before ABLE. I’m very excited with my progress along with newly gained strength and can’t wait to see I can do from here on out. I posted some videos below.

Since being in the hospital to try to find the source of my edema, I’ve lost over 20 pounds of fluid. I guess they were right about my seizure medication being the source of my water weight gain. I feel so much better, and people have been noticing a significant difference as well. There is more fluid that I could lose over time, and I believe ABLE will help with that.

At the beginning of this month, I went to the orthopedic surgeon to get both of my legs checked out. Since I injured my left knee in the middle of 2018, it healed up for about a year after wearing a knee brace but has been bothering me for the past year. At the beginning of 2019, I fractured my tibia on my right leg. A couple weeks ago while doing ABLE, I believe I reinjured my right leg somehow. I’m not sure which part is injured I just know that something is not right about it because my leg spasms and was bruised. It also won’t straighten out.

After getting to my appointment, I had to wait 50 minutes to see the doctor. I talked to him for roughly 15 minutes for him to tell me that in order to see what’s wrong, that I would have to get an MRI and x-rays on both legs. Exactly what I thought before going to my appointment. Then I waited 45 more minutes for my transportation driver to come bring me home. I thought it was a waste of time, but then again, he had to check it out in order to make his decision.

The soonest I could get an MRI was 19 August. I have a follow-up video appointment with the orthopedic surgeon the second week of September. I’ll post an update after I get the results and whatever action he wants to take going forward. I also have an appointment with my pulmonologist at the end of this month. It’s just one of the yearly visits I need, just like a checkup. I usually have them for most of my doctors, either yearly or every other year. I have so many doctors for every need that I can’t even count them.

My family has been doing good. My sister’s birthday is August 11 and oldest niece’s birthday is August 16; she will be eight years old. My other niece will be 1 years old in October. Oh, how quickly they age! Other family birthdays will be coming up in October as well, including mine. Also, I have been getting outside and taking Brody for walks as much as possible. Although the temperature these past couple of months have been in the 80s and 90s with high humidity, which makes it a little and comfortable.

Avery and Madilyn beginning of July

That’s all for this month’s updates. I will update more next month as things progress.

Jenni

Relationships in My Life

According to Merriam-Webster dictionary the definition of a relationship is: "The way in which two or more people or things are connected."

Although there are many people that come and go throughout one’s life, there are some that connect on a deeper level and others that just pass through. In my life I’m fortunate to have many relationships including friends, significant others, family, caregivers, even pets etc. It feels good to have that one person or group you can count on to talk to or be there for you no matter what.

I was once asked if it’s tough to make new friends now that I’m in a wheelchair and a quadriplegic. I think it is difficult sometimes, but it isn't impossible. It seems hard for others to approach someone with a disability because people are afraid of the unknown. I guess I would say that it’s harder to find new friends who are able-bodied versus disabled because I have more in common with someone who has a disability.

I have made many new friends since my accident including past nurses. I also still keep in touch and hang out with friends from before, even ones I’ve had since grade school! It’s great when there are those that are accepting of my situation, especially when it’s someone I meet post accident. That’s why I try to socialize and meet as many people as possible. I want others to know that I’m still me, despite my disability.

Another type of relationship is on a romantic level. I’ve been asked many times about what dating is like for someone in my situation. It seems like a complicated question, but some of the answers aren't any different than from someone who is able bodied. Before meeting my boyfriend Ryan of almost 3 years, I still faced the same obstacles like finding someone who was my type and liked me for who I am. I had ups and downs, faced rejection just like others. I also had to learn that this was okay and I don’t have to settle with just anybody to make me happy.

Ryan and I met on an online dating website called Plenty of Fish. Although he’s been through disability-related situations throughout his life, he understands and accepts me for who I am despite my disability. Ryan is an exceptional guy, and one who has proven his love for me through his actions, affection, care, and trust. He currently works as a CNA helping other people with disabilities in their daily living.

My mom has been there with me through everything. She is always there for me when I need her and takes good care of me. It's hard when she goes away, but I know she needs a break too. I don't know what I would do without her by my side. Two years ago, she was diagnosed with colon cancer and as a result underwent chemo and radiation. That same year she had 2 surgeries. Earlier this year (1 ½ years later) she had to have another surgery to repair damage caused by the chemo and radiation. In November, she’ll have one final surgery.

There are other family members close to me include my dad, sister, and niece. I usually see my dad every other weekend or when he gets a chance to come over. We like to hang out and play games. Sometimes he brings his dog Bailey over. I also have my sister, Kristen and niece Avery who is 4 years old. They live in an apartment nearby, and stop by a couple times a week. It’s nice when I get a chance to see them and hang out. My niece, Avery, likes to be involved with whatever she can, especially helping out with my cares.

Another relationship in my life that I am faced with on a daily basis is having a nurse by my side 24/7. Depending on the person working for me also depends on what type of relationship we have with each other. Some I am closer to than others, especially if they’ve been working for me for a longer period of time. Most of the time the nurse and I have a relationship where we understand each other and have bonded.

It can also get difficult at times having someone by my side all the time. I may get irritated or annoyed with the nurses, but that's only because 12 hours is a long time to spend with one person. Sometimes I just want to be alone with no one in the house, but I know that will never be possible as long as I'm on a ventilator and have a trach. If something were to happen, for example my tubes popping off, they need to be there for me to put them back on so I could breathe. I just have to remember that they are my hands and there to help me.

As far as pet relationships I have my dog Brody who is like my companion dog. Even though he isn’t certified, he still acts like one. His breed is a Chinese Crested Powder Puff and they’re known to be very loyal to their owners. I think that is why he is so in tune to my needs and doesn’t require a lot of direct training, especially when it comes to obedience to me.

Regardless of relationships that may come and go in my life, the one relationship that always remains and never goes away is my relationship with myself. I know if I stay true to who I am and never give up despite what happens, I will persevere and overcome any challenges or obstacles in my way. That being said, my main goal is to live life to its fullest and remain positive for myself and others around me.

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

Just Call Me Auntie Jenni

I know the blog posts this year have been far and few. Lately I’ve been getting emails and messages asking for updates. Since I stopped blogging altogether, it’s been hard to start up again because I feel like I’m playing catch up. Every time I start writing I get stuck with what to say because there’s so much. A lot has gone on in the past few months and I know I won’t be able to fit it all in one post. That’s something I had to realize while starting this one. However, there is one thing that trumps everything else.

The most exciting news is that I became an aunt! My sister was originally due September 7. However, on August 15 her water broke. She went into the hospital and after waiting all day, she was finally induced. It lasted through the night, but I’m happy to say that she delivered a healthy baby girl. Avery Jean was born August 16, 2013 at 5:56 AM; she weighed in at 6 lbs. 15 oz. and is 20 ½ inches long.

My sister came home from the hospital yesterday. She took 12 weeks off at her work, so she’s been hanging out at home. I’m really enjoying spending time with mom and baby! Being an aunt is a very enjoyable experience. I’m so excited for the months and years to come when I get to spoil her rotten and not feel bad when I hand her back to mom! I posted a couple of pictures below for you to see.

Only 12 hours old… So precious!

First day home from the hospital!

Now that I’m getting a rhythm back, I’ll definitely catch you up with what I’ve been doing and feeling all summer.

Jenni

“There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle.”
― Albert Einstein

Lunch Date with Sis

The other day my sister, Kristen, drove my van and took me out to lunch at Benihana. It's a restaurant where they cook in front of you and do all sorts of tricks with knives and food. Last time I went there was my birthday last October. She took the day off of work so we could go somewhere. I really enjoyed it and hope we can do it again! It's nice to get out and spend some alone time with my sis (sort of alone, my nurse was there too). Thanks Kris!

Jenni

Picture

This is a picture of my sister, Kristen, and I on Easter. We had a great time. I'm working on a post right now about transportation. I will be posting it soon.

Jenni

Another Picture

Above is a picture of my sister and I at the art show. She cropped it and changed it to black and white. I think it's a great picture of us. If you're wondering whose fingers are wrapped around my headrest they're my aunt Sandy's. I'm not sure why she was cut out. I'm sure she'll have a talk with me later about that one.

Jenni

Quiet Again

My aunt, uncle and four cousins left our house this morning at around 6:30 AM. They are heading back to Colorado. I think they are going to drive straight through which is like 15 hours or something like that. Way too long for me to be in a car.

I had so much fun with them here. It's so quiet around the house without them. I love having guests at the house. Yesterday we went shopping at the mall down the street from my house. It was just kind of a fun outing to hang out before they had to leave.

The picture above is of my sister and I and my four cousins. It's the best one we've ever taken together. I hope they come back soon!

Jenni

Guests at the House

Today I went to the grocery store with my mom. My aunt, uncle and cousins are in town from Colorado. They drove all day yesterday and got here around 10 PM. They are staying with us through the weekend. I haven't seen them in a few years. So my mom and I went to the grocery store today to buy some dinner for tonight. She will be cooking for nine people instead of just four. On Saturday we are having a bunch of family over. We will be having a huge feast then. We don't really have anything else planned at the moment, but that's okay. I'm really happy they are here.

Jenni

Bailey Tricks

Last weekend on Saturday my dad came over and he brought his dog, Bailey. The first picture is of my dad and I. I like when my dad comes over. Our favorite thing to do together is play cribbage. Sometimes my sister plays with us too. My dad is the one who taught us how to play cribbage, however, I think I'm the best.

The other thing we do when he comes over with his dog is to have Bailey do tricks for treats. He is very good and gentle around me and unlike most other dogs he listens to me. I videotaped Bailey doing his latest trick, touching the light switch. Soon I believe he will be able to actually turn the switch on and off. I tried to add it to the post but it wouldn't work. Maybe next time I can get another video of him doing tricks with me. For now I just posted a picture of him staring me in the eyes waiting for my okay so that he can eat the treat on my lap.

Bailey can do many tricks including dancing, giving high-fives and high tens, shaking with both paws, standing tall on his hind legs, crawling etc. There are many more on the list but I just can't name them all. I did a post a while back featuring a video of Bailey doing a trick we call "paws up" with me. If you would like to watch that one, just click here.

Jenni

Missing My Mom

My mom is on vacation in Mexico for a week. She goes every year around this time. It has taken three people to replace her. Her fiancé Charlie, my sister Kristen, and my aunt Sandy are all taking good care of me. Along with my nurses, we are getting along just fine. I'm looking forward to her return and cooking. Not to say that I'm not being well fed, but there's nothing like my mother's cooking.

I miss her a lot. My mom has been there with me through everything. It's hard when she goes away, but I know she needs a break too. She usually covers all the open shifts when we don't have a nurse. My sister is my backup while she is gone in case something happens with a nurse and they call-in. I don't know what I would do without my mom by my side. She is always there for me when I need her and takes good care of me. I love her very much and hope that she has a safe flight home. She will be coming home Saturday afternoon.

Jenni

Sisterly Love

The picture above is of my sister, Kristen, and I. She is 19 years old and also attends Normandale Community College. She works part time at a daycare and babysits when she can. She also plays softball in the summer and is very good. Kristen is responsible and very mature for her age. She is planning on going to St. Cloud College this fall but is not quite sure what she wants to do for work at this point in time.

I have written Kristen a letter to show her my gratitude and love.

Dear Kristen,

I am so proud of you and love you for who you are. You are one of my heroes. You have been there for me through everything and continue to stay positive. You help me with my cares, sit with me when I need a friend, listen when I have something to say, drive me places I want to go, and love me for who I am. I greatly appreciate your presence and I thank you for being there for me. I am grateful to have a sister like you.

Thanks for everything Kristen. I love you!

Jenni

"Feeling gratitude and not expressing it is like wrapping a present and not giving it."
-William Arthur Ward

"To the outside world we all grow old. But not to brothers and sisters. We know each other as we always were. We know each other's hearts. We share private family jokes. We remember family feuds and secrets, family griefs and joys. We live outside the touch of time."
-Clara Ortega