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

I love Ambulance Rides

In a continuous blog post from the last one… Last week I had a seizure that lasted 15 minutes, along with 2 two-minutes seizures after. My caregiver called 911 which resulted in another trip to the ER in an ambulance. No lights this time though. While I was there, they checked my blood, chest x-ray, and other things that may have caused them. Although they couldn’t find a reason why, so I only spent 3 days in the hospital.

Unrelated to the above paragraph, every year Sister Kenny holds an art show where people can enter their artwork for sale. You can enter up to 4 pieces of all various types like watercolor, oil paintings, sculptures etc. This year my plan is to enter some of my watercolor paintings, although the deadline is March 17. I’m not sure if I will make that or not because I still need to pick out which ones I want, fill out an application, and upload pictures of artwork.

They also need to be for sale, but all proceeds go back to the artist. I have a collection, but I’m so attached to each one that it’s difficult to part with any. Although my dad pointed out that Picasso didn’t keep any of his paintings, which means I can always paint more aside from what I have in the past. I may just have to wait until next year when I can plan it out more in advance. Then I can create some new paintings instead of using some that I’ve already done. I’ll let you know what I decide to do and share the paintings that I picked.

Jenni

Being in the Hospital Is No Fun

On October 15, I had 2 seizures around 8 AM. The first one lasted about 8 minutes, and the second one about 2. I’m on 2 seizure medications to prevent having one, but not if they are related to something. Since the first seizure lasted more than 2 minutes, the protocol for me is to call 911. I was completely out of it from exhaustion, but I do remember the ride to the emergency room.

When I got there, they did some testing to see what might’ve contributed to the seizures. First off, I already had a high temperature. Mine is usually around 97° and I was at 99°- 101°. They took blood, x-rays, CT scan etc.-anything that would help to figure it out. The results were a higher white blood cell count and pneumonia. We think pneumonia was what caused the seizures. In the past, I had seizures that link to bad infections like bladder or lungs.

I was in the ER for 3 or 4 hours and then they moved me to the ICU. I spent Monday the 15th-Saturday the 19th (my birthday) in the hospital. They put me on IV antibiotics, which helps get the infection under control faster than the pill form. Once I was stable, I was able to go home on oral medications. Before all this happened, I was having to suction quite often with colored secretions, so I knew something was going on.

It took a couple of weeks to recover after I got home. I was weak and couldn’t go to ABLE because it was hard to even function during the day. I was pretty much feeling the same as before everything happened, only not miserable so I knew I was on the mend to healing. After being so sick, it takes time for my body to bounce back to normal. I’m finally there, able to withstand being in my wheelchair for the normal amount of time along with my regular routine.

Also, it does take a while to create blog posts, since talking a lot on my computer can be exhausting sometimes. I’ve been writing this post on and off for a while now. I would’ve finished a while ago, but most of my time spent on the computer is writing poetry. I posted one of them below although you can also check them all out by clicking on this link: my poems

Jenni

“A hero is an ordinary individual who finds the strength to recover to persevere and endure in spite of overwhelming obstacles.”-Christopher Reeve

Inner Strength

After severing the sky with lightning

thunder roars inside me

as my strength gives way at times

when I struggle to live my life

Feeling unjust in times of trouble

and lost in crowds of people

where I can’t find my inner being

as I’m clouded by my ongoing paralysis

Hope is me holding onto an

unknown future in which I remain

calm within my feelings

realizing just how beautiful I am

Then a gravel path visibly opens

when my consciousness clears

in which I preside to roll down

to see where my beginnings live on

My Hand

About two weeks ago, my nurse noticed that my left hand was bruised and swollen under and on top of it, along with my ring and pinky finger. We weren’t sure what happened, but I wanted to give it a few days in case the swelling went down. After waiting, the swelling went down a little bit and the bruising started to fade some. Although just to make sure nothing serious was going on, I decided to get an x-ray of my hand.

I ended up going the beginning of last week. I got an x-ray of my left hand and both my knees. My orthopedic surgeon wanted to see how my leg is healing; it’s been about 3 ½ weeks since he told me to rest my legs along with keeping them at a 45° angle or less. The on-call doctor called me later that same day and told me that I have a small nondisplaced fracture at the base of my pinky finger. I made an appointment to see a hand orthopedic surgeon and went yesterday.

When I went today, the hand orthopedic surgeon showed me my x-ray. She told me that it was in place, so I didn’t need surgery. She recommended that I wear a hand splint for at least 6 weeks. It will probably take about 8 weeks because she said my bones are more fragile. When they put it on me this afternoon it started hurting right away, then dissipated after an hour or so. 

After about 3 ½ hours, my arm started jumping and spasming. For me it’s usually an indicator that something is hurting or uncomfortable. My nurse took it off at that point and my arms subsided. I may have to wear it on and off for a day or two so that my hand gets used to it. The orthopedic doctor told me to keep it on most of the time except when I’m washing up.

With non-displaced fractures, the bone typically stays aligned in an acceptable position for healing. The splint will immobilize the injured bone, promote healing, and reduce pain and swelling. She also recommended that I keep it elevated and apply ice to it as often as I can. I will need to just keep using the splint for longer periods of time each use until my hand starts to get used to it. Other than the stress fracture in my left knee and my fractured tibia in my right, I haven't had any other injuries to my body.

Jenni

MRI Results

I had an MRI of my left knee a week from Thursday. My orthopedic surgeon video called me with the results a couple days ago. He showed me the MRI and explained to me what the results showed, what it implied, and how to move on from here. I also received results through My Chart, a device used to talk with physicians and review test results. 

When I received the results through My Chart, it’s always difficult to interpret unless someone explains it to you. Although this is what I saw on the test results page:

IMPRESSION TECHNIQUE: Routine MRI of the left knee was performed without contrast.

IMPRESSION: 

1. New bone infarct in the proximal mid tibial metaphysis.

2. New mild subchondral marrow edema in the posterior aspect of the medial tibial plateau without subchondral fracture may represent stress reaction or osseous contusion.

3. No MR evidence for acute meniscal or ligament tear.

4. Stable free edge fraying versus partial tearing of the inner third of the posterior horn lateral meniscus extending into the posterior meniscal root.

5. Diffuse acute and chronic denervation changes of the visualized muscles of the lower leg.

The way my doctor described it, was that I have a proximal mid tibial metaphysis. In other words, a stress fracture on the posterior side of my left tibia. My doctor suggested that my leg should stay at a 45° angle or less than, straight being the best and 90° being the worst position. I went to ABLE yesterday and discussed my situation with them in a very lengthy conversation on how to proceed from here.

At the end of the discussion, we decided that it would be more ideal that I take the next 6-7 weeks off from the program (starting this coming week). Since my doctor told me that it would take at least six weeks for the fracture to heal, I found it most ideal to take at least this amount of time off. Also, since my doctor has suggested that I stay at a specific knee angle for the next 6-7 weeks, it would be difficult to transport to and from my appointments. Ultimately because getting in/out of the van I am required to bring my knees in to a 90-degree angle which my doctor has suggested to avoid. 

I felt that it is best to focus on healing for now and plan to return when I am ready, and my fracture is all healed. I did have a few questions for some of the people at ABLE regarding my return. I was wondering when I returned what my schedule would be and if I would still have the same lead person that I was working with. He explained that since I’m technically taking a medical leave, that I wouldn’t lose my spot in the program, and they would most likely keep me placed with the same people.

This was great news to hear! Hopefully I heal fast and have a speedy recovery rate with no to little side effects. I’m sad to have to take time off because I’ve made so much progress. Although even if I lose some of the strength and improvements I’ve gained, I’m positive that I will quickly get it back quickly since I haven’t lost the ability to know which muscles to use in order to move. 

Also, at some point, my doctor wants me to get x-rays of my right leg. A while back while doing ABLE, I felt like I injured my right leg, almost exactly where I injured it before. While lying flat, my leg won’t straighten completely and rotates out words. After I explained it, he thinks that it’s not too big of a deal, but still wants it checked out just to make sure.

Jenni

What Happens In An Emergency?

Every person with a disability has different needs in an emergency or matter of fact situation. It’s crucial that each person take stock of their own needs and required supports. This includes being able to assess the situation and how they can meet those needs depending on what the situation is. As far as me having a spinal cord injury, there are certain things that I need that may be different from others.

It’s very difficult on everyone when one or more of my caregivers can’t work. Especially when there is nobody to replace them. It is usually up to my family to help me, do my cares, and make sure nothing goes wrong. Since I require 24/7 nursing, especially if something went wrong with my ventilator or tubing, it’s very important that someone is always within earshot. This is one of the positives to having a nurse with me all the time. Although I don’t always want someone with me everywhere I go, I need every hour I can get with them.

What do I do if something comes disconnected on my vent or tubing? If something comes disconnected, the first thing that happens is my vent will alarm. That notifies the persons taking care of me that something has come disconnected but doesn’t tell you where it is. Then if they can’t find the area within a couple of seconds, they grab the Ambu bag and start bagging me. It’s difficult to bag me and find where my tubes came apart at the same time, so if someone is around to help it’s the best scenario. Although, if not my nurse has to do both at the same time.

Every place I go, my nurse comes as well. If I’m just going outside for a roll, they load my wheelchair with my portable suction machine, oxygen, and a backpack that has supplies in case of an emergency including an Ambu bag. If I’m going to an appointment, I still bring the suction and oxygen, although instead of the backpack, I bring a rolling suitcase. In the suitcase is everything that’s in the backpack along with other supplies, because I take it when I’m going to be farther away from my house and for a longer period of time.

Along with emergency and extra supplies, my nurses pack their charting sheets along with a travel chart. In it is an up-to-date list of all my prescription medicines. Included is their generic names and the dosage amounts. Also, there is a list of my allergies. I also bring my medical alert card with information about my medical needs, along with my insurance and medical assistance card. It’s important for me to bring along a list of all my doctors and emergency contacts as well, just in case.

Jenni

Update

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.

Jenni

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.

Jenni

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!

Jenni

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!

Jenni

Update on Me

The past few weeks have gone by fast. Back in July, I talked about how I joined a Bible study group that meets once a week. Since starting, I have really enjoyed reading the Bible. Every story has a meaning, and it can be applied to life in different ways. I decided to join another group that also meets once a week but on another day.

This one is different in which instead of reading the Bible in a year, we are just studying the book of Genesis and it only goes until December. It is also more involved. There are lectures to watch, notes to read, and questions to answer along with the reading. I like both group studies, as they keep me busy. Probably the reason why I haven’t written a blog post for a while.

I have still been trying to get out every day, walking Brody. It’s been really nice outside, with temperatures in the 60s and 70s. It even got to 80° the other day. I’ve been enjoying the fresh air and change of scenery from my house. All the trees are starting to turn orange and red now that it’s fall. Pretty soon winter will be here and with all the snow it’s hard to go out. Not to mention when the temperatures drop below freezing.

Fall Colors in Minnesota

Brody and I on a Walk and Roll

Since quarantine started in March, I have only left my house a hand full of times. Because I am on a ventilator, I’m at such a high risk if I get the coronavirus. That’s why I’m so cautious about being around other people and going to places that may be overcrowded. I suppose I could go to a park or movie where I could social distance myself from others. I do have a couple of doctor’s appointments coming up in October and November so I will be going out, but it’s nothing like doing something for fun.

I have still been in a lot of neck pain. When visiting my neurosurgeon last month, I got an x-ray of my neck to see if everything looks okay. He also wanted to see if there was anything bone related that could be causing my pain. But when he looked at it, he didn’t find anything. In fact, he stated that the plate that he put in when I had surgery to remove a bone spur in my neck was holding stronger than he initially thought it would. I would’ve had to have another surgery to do a bigger fusion if it wasn’t. He said that my pain was probably just due to strain leading to tight muscles, especially because I can only move from my neck up.

Also, I’ve still been having trouble sleeping and with edema. My sleep doctor doesn’t want to give me anymore medications for sleep because I’m already taking a lot. I did get a prescription from my primary doctor for anxiety, which has helped a little bit with sleep. That’s one thing that keeps me up at night. He also referred me to a specialist within the University of Minnesota Fairview offices that can take another look at why I might be retaining fluids. I had a phone call with a doctor and he’s going to look over every test I’ve done and every medication that I am on to see if he can figure it out.

Other things that have been keeping me busy are playing games, watching movies, and painting. Yesterday I painted an abstract picture with lots of colors on it in which I posted below. I also shared a few pictures of Brody. He is quite the favorite around the house!

Avery and Brody

Brody on My Bed

Brody Sleeping on his Toy

Abstract Rainbow Painting

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

Winter Update

I’m glad to report that I haven’t been sick since April this year. I had to minimize my activity level a little bit in order to maintain my health. It’s too bad that it came to that, but I feel staying healthy trumps all in my life right now.

It hasn’t stopped me from taking Brody outside for walks. My body can usually handle the weather if it’s 30°F or above; I’ve gone out when it’s been colder than that. I’ve realized that the feeling of temperatures is different depending on where you live. As far as Minnesota, we’re used to 4 seasons, winter being one of them and bearing the cold. Someone in a state who’s used to warmer weather may think that’s insanely frigid.

Although yesterday it was kind of drizzling rain all day and today it’s snowing with wind. My backyard does look pretty with the snow though! I think it’s been about a month since we’ve had some snow here which is unusual for winter weather; same thing with the temperatures being warmer.

Tomorrow I have a physical with my primary doctor. The reason is because I’m having surgery on January 27 to replace my baclofen pump. There’s nothing wrong with the pump itself. The battery in them only lasts about 5 years, and then it needs to be switched out when it runs low. Last time it was checked a couple weeks ago there was still about 6 months left but they like to change it out sooner just in case. It's a good thing the scanner can detect how much battery life is left, otherwise it could turn into an emergency situation.

This’ll be my 4^th baclofen pump. I had my first one inserted in 2003 and the 2^nd in 2008. They changed it last in 2013. Surgery itself won’t take very long and if all goes well, I’ll only be in the hospital one night. Hopefully nothing major goes wrong otherwise I’ll have to stay longer.

Jenni

Dealing with Sores

It’s important for people who are unable to move themselves to be aware of pressures sores. They occur from too much pressure on one spot of the body for a long period of time. They start out as just a red mark and can progress into a nasty open wound that can be difficult to get rid of. They can be very painful, and if infected may cause death. Many people with physical disabilities get them on their back and butt from sitting and laying too long without changing positions. One can also get pressure sores from laying on wrinkles or from their orthotic braces being too tight or not fitting correctly.

Something that helps prevent them is to reposition frequently. During the day in my wheelchair, my nurse will change my position using a pillow. I alternate from having a pillow to not having one, in order to relieve pressure on my back. My nurse will also stretch my arms and legs a couple times so that they are not in the same position for too long. My wheelchair also reclines and tilts; that way I’m able to change the position of my body.

In bed, I also use pillows to reposition and relieve pressure on certain parts of my body. I start off by turning to my right side before falling asleep. During the night when I am sleeping, my nurse comes in and turns me three hours later to my back. After about an hour, they turn me on my left side for three more hours. It's a lot of movement but well needed.

I am in bed more than I am in my chair, and because of that I have an air mattress as another precaution to ensure that I don't get bed sores. The mattress is inflated with air by a pump that hangs on the end of my bed. The air alternates throughout the mattress to change pressure from one spot to the other. It is extremely comfortable and essential for preventing bedsores. My wheelchair seat that I sit is called a ROHO cushion and it is also filled with air for the same reason.

Over the years, my skin has been very healthy, and I haven’t had a pressure sore since right after my accident when I got one on my right shoulder blade from my Halo vest. Other than that, I’ve been very lucky. Although lately I’ve been dealing with a small but deep pressure ulcer that developed under my left knee. At first, we thought it was coming from the knee brace that I wear for my bruised bone. Because of this, I decided to stop wearing it a couple weeks ago.

I’ve been putting bacitracin on it and covering it with some gauze and paper tape. Though it’s getting slightly better, I’m going to see a wound doctor on Tuesday so he can check it out. Hopefully it’s not something too serious and I can get rid of it within a short period of time. If not, it could turn even worse. I’m just glad that I’m going to go get it checked out.

Jenni

One Knee Down, One to Go

I remember earlier this year that I wrote a post about my knees. Based off a new set of x-rays, my right knee is healing by itself very nice. Although my left knee pain went away, I reinjured it about 3 months ago. Despite all the measurements I took and precautions I’m still having pain in my left knee.

The last time I saw the orthopedic doctor, he gave me the okay to stand. It’s too bad because since I started to stand again, it was helping the fluid in my body to shift. But because of my reinjury I am unable to stand right now. Hopefully I will get back to it soon. The Last thing I want is to reinjure it again. Even though it is good for the rest of my body, I’ll have to stay off my feet for a while.

I’m doing well respiratory wise within the last month since my update. I had another CT scan and found that the abscess still needed to shrink more so they put me back on antibiotics. I’m pleased to say that I’m off my antibiotics and have been using a vest treatment that helps get all the secretions out. I wish I would’ve had it all along since it’s so useful. Hopefully between that and other interventions that come about I’ll stay healthy! I’m going back in a week or so to get a follow-up CT scan just to see if the abscess is gone.

Also, since returning home from my last stay at the hospital, I’ve lost about 10-15 pounds of fluid. I think because I was so sick, it was causing the ability to keep my albumin up. Now that it’s normal, the fluid in my body is slowly shifting and draining easily. I feel much better and hopefully it will continue to drain.

Jenni

Another Visit to the Hospital

I thought it was time for an overdue update on what I’ve been up to. About 7 weeks ago I was admitted to the hospital for pneumonia in both lungs and an abscess in my left. During my 5 day stay they gave me IV fluids, multiple antibiotics, albumin and a unit of blood. I went home on oral antibiotics and was feeling much better.

Since coming home, I’ve been trying to minimize my activity level, so I don’t wear myself out. The weather has been nice outside lately, so I’ve been taking Brody for a walk and roll as much as possible. This is aside from going to all my Doctor appointments. So far since the hospital visit, I have seen my Pulmonologist, ENT, OB/GYN, Orthopedic Dr., Primary doctor and had a CT scan.

Earlier this week, my doctor wanted me to have a CT scan to make sure the pneumonia was clear. Even though I'm feeling much better, the results came back showing that I still have a small abscess in my left lung, so they put me back on antibiotics. Hopefully soon everything will clear up and I will be infection free. The last thing I want to keep talking about is my health!

Jenni

Injections Again

I went to an appointment to get Botox injections again today. I’ve been doing it for the past 10 years now, and I’m starting to feel it wear off faster than usual. The last couple of times they used an added drug that helps with pain along with the Botox. I found that the drug they added helps make it last longer. This is a good thing since I still have to wait to get injections every 3 months.

Also, PHS came out to my house and removed my PICC line. It’s too bad that the process for taking it out is so simple yet putting it in such a hassle. I have to transfer onto a table at the hospital so they can use an ultrasound machine to place it. When they remove it, someone trained can just take off the bandage and it easily pulls out.

Onto a different topic, I believe I’m developing seasonal depression during these winter months. It’s so difficult for me to get outside, take Brody for a walk, or even go to places other than doctor appointments. It doesn’t help when the weather is bad or I’m sick with a respiratory infection. Hopefully it’s just a phase and once the season changes so will my feelings.

Jenni

Update to My Update

Unfortunately a couple days after my last blog post, I started showing signs of another respiratory infection. Based off cultured test results, they put me on a 10 day course of Cipro, a broad spectrum antibiotic that I’ve used before for respiratory and also bladder infections. Since I was suctioning so often and my infection was getting worse, they also decided to do an outpatient bronchoscope on February 14. The doctor also took another sample while doing the procedure.

Based off the results, it showed that my infection was resistant to the Cipro I was taking so on the 26 I went to the hospital to get a PICC line placed. My nurses are trained to administer the IV antibiotics at my house. I wish I could figure out what’s causing my back to back respiratory infections. I know that comes with being trach and vented, but I never used to get them like this before. It’s been just after 2 days of medications and I am starting to feel a little better.

The day before I got my PICC line placed, I went to the orthopedic doctor, exactly 4 weeks since I saw him last. I got a follow-up x-ray done on my right knee. He told me that it’s starting to heal on its own and wants to see me in another 3 weeks to check the progress again. Based on the results shown he said that it will probably be about 3 more months before I’m able to stand again. As far as my torn MCL on my left knee, that will just take more time to heal. Interestingly enough I still have pain on the inside of my knee.

Jenni

Winter Update

I have been hearing a lot of people telling me how much reading my blog posts, along with updates, and inspiring others means to them. I decided it’s time for a well needed, overdue post. I noticed that every time I started one, for some reason it’s like I have writers block even though my life is filled with things to talk about. So finally here it goes…
 
First off, for unknown causes, about 4 months ago I injured the inside of my left knee. After an x-ray, there was no apparent bone fracture or break so the orthopedics thought it was a ligament sprain. They gave me a cortisone shot thinking that would help and then checked back with me regarding it. If the pain were to continue, I would’ve had to get an MRI to see if it was something more severe. I wasn’t able to bare weight on my leg because of it and it disrupted my standing schedule of 30 minutes every day. I have slowly worked my way back up to that amount of time and my pain is off-and-on depending on certain positions.

Next, I last wrote an update in June regarding my health. About 2 months ago I got another respiratory infection. This time I caught it early enough to where I just went on some antibiotics and didn’t end up in the hospital. The course was for 2 weeks and I’ve been pretty stable since it cleared up. It’s very difficult on my body and wears me down when I’m sick.

Unfortunately, almost a week before Thanksgiving my grandpa passed away. He was my mom’s dad. It wasn’t exactly sudden; he was living in a care facility for a while before that. We held a memorial service for him a couple of weeks ago and I had the privilege of sharing a Bible verse. I have a lot of memories of us, especially when I was younger. He will be forever missed in our hearts!

Last week the temperatures were hovering around 40°F. I took my dog Brody outside for a couple of short walk and roles. The first day, he was practically pulling my wheelchair like a sled dog! Since the weather’s been so nice out we didn’t have a "White Christmas" except for the little bits of snow already on the ground. Although the temperatures started dropping along with some snow, then rain a couple days ago.

Since my accident, we’ve been hosting Christmas every year. So we had family over Christmas Eve and Christmas day. It’s kind of nice having everyone come to us. I didn’t ask for anything in particular this year. I’m at that age where I find it more fun to give gifts than receive them. We also play the dice game as a family so it’s less pressure to buy a gift for everybody. I did receive

Hopefully I will be able to write more in the future. I realize now how much people want to hear about what I have to say or what I’m up to. Be sure to keep checking back to see more posts coming soon! Also, feel free to leave a comment and give me feedback.

Jenni

“Learn to enjoy every minute of your life. Be happy now. Don't wait for something outside of yourself to make you happy in the future. Think how really precious is the time you have to spend, whether it's at work or with your family. Every minute should be enjoyed and savored.”

-Earl Nightingale

Summer Update

It’s the beginning of summer already and I can definitely feel it in the air. The temperatures outside have been hot with lots of humidity. With the highs being above 90°F, it’s difficult to get out, especially when the heat index is over 100°F. There also were a couple of days where there have been heat advisories or warnings to where they don’t recommend you get out of the house.

On those days I don’t go outside, although I do try to get out every day to take Brody for a walk. I mostly stick to the shade, just going down the street and back. I’m usually only outside for no more than 15-30 minutes, which is plenty of time for him to get some exercise and also me some fresh air. It’s better when there’s a little breeze to help cool things down. When it’s cooler out I go for longer walks.

Other than getting outside, I have been trying to stay healthy. Last month I ended up in the hospital for 5 days for pneumonia again. I’m finding it more difficult to stay away from that place of being sick all the time, especially over the last couple years. Now that I’m feeling better, it’s harder for me to get out places knowing that’s what may cause me to become sick.

As of other things, following up with the edema that I was talking about last fall, I’ve been seeing more doctors about it. They narrowed it down to me having low albumin (loss of protein) although I haven’t gotten any answers as to how to change it. I’m going to see a nutritionist in a couple of weeks. One doctor suggested protein powder to see if that helps. Even though I do eat foods with protein, somewhere it’s getting lost.

Another thing she that I have been working on still is standing in my wheelchair. I have been trying to do it every day for at least 30 minutes. That all depends on what my blood pressure is and how I’m feeling. I take my blood pressure about every 5-10 minutes to make sure it’s not dropping. I usually just watch TV while standing. It’s difficult to go on my computer because I need to do as little talking as possible so it doesn’t drop.

For now, I’m going to continue to go outside when it’s nice. My goal is to avoid sickness and steer clear of the hospital. I’m also going to try to figure the cause of my edema. Hopefully it’s not something any more serious.

Jenni