Pain and Therapy

Continuing from my post before this…

Along with all of my spasms and tightness comes pain as well. I’ve upped my therapy during the week to double sessions (1 ½ hours instead of 45 minutes) to try to get things under control. I’ve also integrated more stretching during the day to help decrease my tightness. It makes it a little difficult to do things when everything’s going on at once and I’m having a hard time managing things in that department. I feel like I’m in a constant battle with my body. I’m not sure what else I can do. All I can say is my schedule is pretty booked already with therapy. I know I’ve talked about my therapy before but here is a look at my weekly schedule:

Monday: Massage 9 AM-10 AM
Tuesday: PT 8 AM-9:30 AM followed by Acupuncture for 45 minutes
Wednesday: PT Afternoon for 1 ½ hours
Thursday: Manual Therapy 8:30 AM (kind of like PT only a little different)
Friday: PT 8:15 AM-9:45 AM

Currently, I am looking into other options to figure out where my tightness and pain is coming from. I went to a Gillette clinic for a seating evaluation yesterday and the guy that did it told me it might be time for a new wheelchair! Not sure what to think this info yet; I’ve had this wheelchair for 4 years now. My last electric wheelchair died on me after 5 years so it’s definitely a real possibility and consideration. Does anybody have any suggestions on brand, style etc.? I have only worked with Invacare wheelchairs but I want something different. Any comments would be greatly appreciated!

Coming next post: more about me and what I've been up to; less about tightness and pain!

Health and Healing

I realize the posts this year have been far and few compared to when I started this blog October 2008. Between trying to stay healthy, doctor’s visits, managing my pain, doing physical therapy, dealing with the loss of a close friend, taking care of Brody, being a new aunt, volunteering etc. it has been difficult for me to complete a blog post. Oh, and did I forget to mention working? I will probably take the next few posts to cover everything so you’re up to date (I know I say that a lot but I really mean it this time)!

I have mainly been focusing on staying healthy. The last place I want to end up is in the hospital again. That means lying low keeping my body relaxed and comfortable. Although it seems that once I do, yet another infection or symptom comes in which I have to address it right away. Last weekend I started showing signs for yet another UTI; I was also having other symptoms of different infections. (Over the past couple of months, I’ve been on 4 different antibiotics in a row trying to treat what I believe to be the same UTI that just keeps getting suppressed by the antibiotics and then comes back a few days later.)

On Monday, June 23 after feeling sick Sunday and all night I ended up going into the ER. They took a few samples, made me wait in the waiting room for 4 hours, and then told me all the tests came back negative. I went home feeling like I wasted the whole day for nothing. However, come Tuesday morning I felt great and most of the symptoms had gone away (except UTI). I spent the majority of the week trying to get orders to bring another sample in. Finally, I was able to Thursday and the results were initially negative but then came back positive yesterday. So, yet again I’m on an antibiotic (this will make it 5).

Dealing with infections, being sick, pain etc. in my situation is very frustrating and difficult. It brings a lot of stress along with takes up a lot of my time. Not to mention my body doesn’t handle it very well. I get a lot of spasms and my muscles get tight making it hard to do range of motion and causing pain. It seems that one thing affects another and another and so on. This seems like a good spot to break… Next Post will be a continuation!

On the Road to Recovery

Well, I’m finally feeling back to my old self again.  The last 2 months have definitely taken a toll on me.  After a couple months of 3 separate hospital visits at Methodist Hospital due to grand maul seizures, a couple weeks of trying to clear a UTI (and still fighting it), and just getting over the 24-hour flu (that ended up lasting more than 48 hours) all last week.  I also started to develop an infection inside my lungs and trach which fortunately is starting to go away now on its own.

It’s just like one thing was happening after another and I wasn’t able to catch up in between each episode.  My body was worn down and unable to recover as quickly as it needed to.  Unfortunately, when one sickness happens, many other ones follow.  My immune system doesn’t function at a normal level and it’s harder to get rid of infections.  Lately, I’ve been really focusing on relaxing so I can maintain stability and be able to function properly.  Luckily I bounce back pretty quickly.  I’m hoping this is the last of my seizures and everything will continue to be normal for a while.

*Insert Updated Message*

I was just about to post this the other night (Saturday 4/19) when I started to become a little out of it.  I started to have multiple “mini” seizures.  I say it like that because they weren’t like the minute long grand mal seizures I was having within the last 2 months.  These ones were lasting about 15 to 30 seconds.  My nurse had to call 911, the nonemergency line, and I went back to Methodist Hospital.  My mom would have just taken me in our van because the seizures weren’t as bad. We realize that utilizing the ambulance isn’t always necessary, but my case is a little more complicated.  I was so unresponsive, unable to talk with any clarity, and very confused.  So it seemed like the natural decision just to use the nonemergency service to bring me in.

We found out the seizures due to going septic from a UTI that I had just got done writing about in the post above.  They admitted me overnight in order to give me IV antibiotics and fluids and because I was still having some seizures and unresponsiveness.  Luckily, they discharged me the following day because I was already hundred percent better due to the IV antibiotics.  I made it home Easter Sunday at 12:30 PM before the 20 guests that came over.  I’m now on the right medications and was able to enjoy a gorgeous 70°F Easter day with my family!

Hopefully within the next couple of upcoming posts, I’ll be able to update you on everything that’s been happening since I started getting sick and having seizures in February.  Thanks for your patience and I look forward to updating more!

Seizure Activity

On Wednesday, February 6 at about 1:45 AM my nurse was sitting at the desk when all of a sudden she heard my vent start to alarm.   She got up and rushed in and she quickly realized that I was having a grand mal seizure.  My arms were outstretched and twitching, my eyes were rolled back in my head and my eyelids were rapidly moving.  There was also foam coming out my mouth and my face was doing funny things as well. 

We have an intercom system throughout our house so she yelled from my mom to come down.  She raced down the stairs to find me unresponsive post seizure.  It lasted less than a minute; they were calling my name and my nurse was trying to do a sternal rub on me.  She did a quick assessment including taking my blood pressure, checking my oxygen level and pulse just trying to make sure I was okay.  Everything was pretty normal except when she checked my pupils.  She found that my pupils were very small (pinpoint) and non-reactive to light.  I was unresponsive. 

My nurse called 911 and they came, wheeled me out and brought me to Methodist Hospital.  I had blood coming out my nose and mouth from biting my tongue and cheek.  My nurse rode in the ambulance with me and my mom came shortly after to the hospital.  My eyes were open but I was still staring straight ahead and nonresponsive.  It is unclear whether or not the staring ahead was a petite maul seizure or if it was related to the grand mal seizure I had initially.  Around 5 AM I had another grand mal seizure. 

When I got to the hospital, they checked my CO2 and found that it was really low.  The normal reading is between 35 and 45; mine was at 7.  Within the next couple days after everything happened I was still not responding to anything. I was running a fever and one of the doctors came in and he said one of the causes could be that my ventilator settings were too high.  Basically, I was being over ventilated causing me to hyperventilate.  The technical term for this is called respiratory alkalosis.  What probably happened is that when my nurse turned me on my side the large leak that I typically have around my trach was somehow sealed off.  If this were the case, I was receiving my full breath coming in causing the respiratory alkalosis.

What is respiratory alkalosis?

Respiratory alkalosis is a condition that changes the balance of carbon dioxide and oxygen in the blood.  When you breathe oxygen (which is needed by the body to function properly) it is inhaled into the lungs and carbon dioxide (a waste product) is exhaled. Normally, these two gases are kept in balance by the respiratory system.  Respiratory alkalosis occurs when carbon dioxide levels drop too low.  This causes the pH of the blood to rise and become too alkaline which is what happened in my case.  Apparently respiratory alkalosis is associated with numerous illnesses and is a common finding in patients on mechanical ventilation.

Overbreathing is a sign that respiratory alkalosis is likely to develop. Low carbon dioxide levels in the blood also have a number of physical effects. These include: dizziness, bloating, feeling lightheaded, discomfort in the chest area, confusion, dry mouth, tingling in the arms, heart palpitations and feeling short of breath.  Finally, an affected person may have a seizure.  However, the NIH states that the risk of seizures is very low. They only occur in the most severe cases.  As far as the recovery process, once carbon dioxide levels in the blood are brought back to normal, the symptoms should disappear within a short period of time.  In other cases, the explanation is a general medical emergency.  At these times, the outlook can be more uncertain.

Before they knew the cause, they did all sorts of things to try to figure it out.  They put in a PIC line and started IV antibiotics.  They tried to do a lumbar puncture to test my spinal fluid to see if I had meningitis.  However, they weren’t able to go low enough because of my baclofen pump.  I also had an MRI, CT scan, blood drawn; basically they did a full work up trying to figure out what was going on. 

When they determined it was respiratory alkalosis they ended up turning down the settings on my vent.  Then they checked my blood gases in different positions to see where I was at.  They hooked electrodes to my head almost like a skullcap to measure brain activity and brain waves.  To help fix the problem right away, they loaded me up with seizure medications and were surprised when my EEG looked like I had taken a lot of drugs LOL. 

There were many funny things I did while on these meds.  In one instance, I kept trying to tell them to take the washcloth off my head (the EEG).  At another time, I was determined to have my nurse change the channel on the TV to channel 4 (I was actually looking at the monitor they had me hooked up to).  It was also interesting when the doctor came in to do a mental exam on me.  She held up a flashlight and asked me what it was and I got a big smile on my face.  I said “it’s a scapula”.  I also couldn’t verify my name or date of birth.  They didn’t fully understand in the beginning that this is not how I normally act; they didn’t really know my personality so my nurse was showing them videos of me on YouTube. 

In order to determine if I could eat/drink anything, that Friday afterwards they did a swallow study on me.  They made me swallow this nasty chalky tasting stuff.  It’s basically where they take a machine so they can see it go down.  Because of the state I was in, I failed miserably.  That’s when they decided to keep me on tube feedings to supplement my diet.  Before I was able to eat again, I had to do the swallow study again.  I was much more conscious and hungry for food!  The second time I passed with ease but had to start out with Jell-O, applesauce and other soft foods.

I went home on Monday February 10^th and tried to continue with my daily routine.  However, on Thursday, March 20 I had another seizure at the same time in the morning.  My nurse called 911 and I went in to the hospital again by ambulance.  After doing some tests, they couldn’t figure out what caused it.  This time, it wasn’t due to respiratory alkalosis; now I’m not sure if that was the only cause of the first seizure.  I was only in the ICU at the hospital for one night.  I went home the next day around 5 PM and continued my routine as normal trying to recover.  Yet once again, at the same time on the morning of Wednesday, April 2 I had a 3^rd seizure.  The same thing happened as the first 2 and I was admitted to the hospital again.  I was there overnight, discharged the next day and they still haven’t found a cause.

Unfortunately, each seizure has given me short-term memory loss.  The first seizure was the worst and I don’t really remember that week or a lot of the time I was in the hospital.  The other 2 were a little bit better, but not being able to remember things is difficult especially in my situation.  Even though I don’t remember things and my memory is a little fuzzy, I do remember how happy I was each time I was discharged.  I’m not a fan of the hospital even though I’ve spent so much time there.

As disappointing as is to have seizures in the first place, not knowing why they are happening is even worse.  Currently, I’m seeing a neurologist and she prescribed a seizure med for me while we try to figure out the reason why.  The biggest part is that seizures aren’t new to me.  I used to have them after my accident in the same way and was on a medication for them.  After 5 years of having them, in the beginning of 2009 I discontinued the meds after being seizure free for 2 years.  I never knew the reasons for them back then and may never find one for these.  The good thing is that I’m on medication for it now so hopefully they won’t happen again.

I look forward to posting more about what has been going on these past couple months within the next week!  Thanks for your patience.

In Recovery Mode

Hello everybody,
I just wanted to let everyone know that Wednesday morning at 2 AM I had a seizure.  My nurse called 911 and they took me to the hospital.  I was in the ICU since Monday evening and have been pretty much out of it since.  I still have a lot of memory loss, and won't be able to update probably until next week.  Thank you for your patience, thoughts and prayers!

Finishing My Redesign

I can’t believe that it’s February already!  January went by so fast and I have made a lot of changes.  Unfortunately, the posts aren’t really coming like I hoped they would.  It’s like every day I go on the computer with the intention of blogging but end up getting distracted by other things.  It’s a habit that definitely needs breaking.  The web does an amazing job at sucking you into a world of news stories, interesting facts, videos, articles and of course the ever growing social media.

The low temperatures don’t make it any easier.  Here in Minnesota it’s been extremely cold and snowy.  I spent most of January indoors which was hard on me since I like to be out so much.  I’d like to find more places to get out and do things at.  Whether it’s volunteering, shopping or even finding a side job, I’m interested in getting involved with more things.  Hopefully things will start opening up… We still have our snowiest months to come!  Despite the weather it’s given me some time to finish my redesign projects.

My blog is pretty much put together and redesigned! I just have a few tabs to finish and I’m in the process of doing that.  It's taking a lot of time but it will be well worth it.  Anyone have any comments or suggestions?  So far I’ve gotten positive reviews from people and I love the new design.

My room is just about back together.  I changed the color from light blue to sail cloth (more of a light taupe color); it’s a big difference and definitely more grown-up.  I also hung all new pictures but still have a few walls to go.  I also ordered 2 recliners to put in there instead of my blue couch.  That way I can sit in one of the recliners to get a break from my wheelchair and bed.  I’ll be posting pictures in about a month when everything comes together, hopefully sooner than later.

Today I’m going to be watching the Super Bowl.  I don’t usually watch a lot of football, although I’ll watch the Minnesota Vikings here and there (mostly when they’re doing well which isn’t too often these days).  The Super Bowl is packed with good teams, lots of noise, and great commercials.  Sometimes I just want for the commercials which is rare because most of the time when I’m watching TV I try to avoid them by fast forwarding!

Redesigning!

I’m currently going through a bunch of changes in my life.  This also includes a well needed update on my blog.  You will soon see my blog transform before your eyes!  Over time, some things may need to be edited or changed, but the fresh new look is going to be awesome!  I can’t wait until everybody can see what it looks like!  Feel free to comment or ask questions about the change.  I’m also open to suggestions if you have any.

Along with my blog changing, I decided to paint my room and redecorate as well.  It’s been painted and now I just have to put everything together.  I’m also going to buy new things to put in my room very soon.  I will definitely post pictures of the new color and then eventually of my whole room.

Jenni

Wheels in Winter

Although I love Minnesota, winter is hard on me (and my wheels).  With cold temperatures below freezing and sometimes even below zero, along with the piles of snow it’s difficult for me to get around. Sometimes I develop seasonal depression because I’m stuck indoors.  When that happens, I’m never in the mood to do anything or be productive.  It’s very unfortunate because I love getting outside (especially to take my dog for a walk) and go out in the community.  I’m looking forward to spring when I can get outside more.

Last week was especially hard.  The temperatures were very extreme; schools, events, activities etc. were even governed close last Monday and Tuesday because of the cold.  I believe the high was below -20°F and the wind chill factor (how it felt) was at least -40°F.  The news commented saying five minutes outside and someone could start to freeze!  Even Brody didn’t want to go outside.

The weather here is also very unpredictable.  The other day felt like a heat wave with the high being 40°F.  Other states probably might consider that cold but not us here!  I would definitely take Brody for a walk if there wasn’t so much slush in the streets.  In fact, I did when it first snowed and everything was fresh.  Last night it snowed a few inches and we’re due to get more today.

 

Me and Brody about a month ago.  It was still warm enough to be outside and the ground wasn't too wet.  By the way, he loves his sweaters!

 

The sun was shining brightly.

He only goes in the snow when it's warmer out.

When it's cold and snowy he goes out as quick as possible! 

On this day he stopped to soak up the sun.

Having a SCI and being on a ventilator is no match for the cold weather.  Because of my injury, I’m not able to feel if I’m cold or hot.  The only way I know is when it’s too late and my body starts spasming.  Also, the cold air can be very hard on my lungs.  When the vent pulls the air in, it goes through the tubing, then my trach and into my lungs.  There is nothing to warm the air up so it feels the same in my lungs as it is outside.  When someone breathes through their nose, the hairs warm the air up so it’s not such a shock.

There are still a couple months left of winter with more cold days and lots of snow!  As long as the temperature stays above 0°F I’m willing to venture out.  It’s definitely not the same to just look out the window as it is actually going somewhere.  Hopefully my wheels can take all the snow we’re getting and I can go somewhere soon.

Jenni

Here's to the New Year

As the New Year starts, I’m reminded of the reason why I choose life instead of going down a darker road. Since my accident, I’ve continued to stay positive and believe that things occur for a reason. I don’t take anything for granted because you never know what can happen. There are instances when life can be difficult and we may face times of trouble. That might mean having to deal with things that can be unimaginable; things that may bring us down or even break us.

Despite what I’ve been through and what’s happened, I still remain hopeful and have joy because that’s what gets me through even my darkest moments. I realize that to many people my situation may seem challenging or hard and some even feel sorry for me. However, I’m grateful for where I’m at knowing very well that my situation could be worse. I live every day like it’s my last and cherish what I have.

That brings me back to my favorite quote and what I always say about it: "Life is not measured by the number of breaths we take, but by the moments that take our breath away." This quote has two meanings for me. The first meaning is exactly how it’s stated. The second is a literal and more personal meaning. Life is not measured by the number of breaths I take, which happens to be 18 breathes a minute, but by the moment that took my breath away.

The highlight of 2013 was the birth of my niece, Avery Jean. She is now almost 5 months old and the happiest baby ever. I’m always greeted with smiles and she’s even starting to laugh a little bit! A child is the greatest gift anyone could ask for. I love being able to watch her grow and develop each and every day. My sister Kristen is a great mom also; I’m proud of her for everything she’s done and how devoted she is.

Avery 4 1/2 months

My goals for 2014 are to stay true to myself, continue motivational speaking and volunteering, find a job that I’m passionate about, start working on writing my book, paint and update my blog more. I’m currently in the process of redesigning my blog and my room. Not sure what that says but I am mainly trying to make changes in my life. It’s difficult in my situation to be spontaneous with change. It is definitely a process and I get bored easily not being able to do things all the time when I want to do them. Although I believe I make the most of my situation and strive to be a better person every day.

Jenni

"To laugh often and love much; to win the respect of intelligent persons and the affection of children; to earn the approbation of honest citizens and endure the betrayal of false friends; to appreciate beauty; to find the best in others; to give of one’s self; to leave the world a bit better, whether by a healthy child, a garden patch or a redeemed social condition; to have played and laughed with enthusiasm and sung with exultation; to know even one life has breathed easier because you have lived-this is to have succeeded."

-Bessie Anderson Stanley

"There are only two ways to live your life. One is though nothing is a miracle. The other is as though everything is a miracle."

-Albert Einstein