Spasms and Another Hospital Visit

I have explained before about muscle spasms being a part of having a spinal cord injury. I have asked a few questions to my doctors if I should increase my baclofen pump (up the dosage) because of increased spasticity.

A specialist in physical medicine and rehabilitation along with spinal cord injury medicine working at Sister Kenny who helps loosen my neck explained some reasons to and not to increase it. Also, why I may be more spastic now.

Increase-if the spasms hurt, they make it hard to sleep or interfere with daily activities.

Some reasons why I may be more spastic right now are: weather changes, Botox needed in my neck, health issues, get worse after a while (increase then muscles get used to the dose then the process starts all over again) etc.

Not to-one thing she explained is that despite muscle spasms being hard to control or a nuisance, they are good for keeping muscle tone or muscle activity (maintaining muscle circulatory function, compensates for muscle weakness, keeping bone density etc.

She also said to spend a little extra time working through each spasm (if my arms spasms straight, work on bending to release the spasm.) This will make it easier to get things done, even though it may take up more time than usual. Although I usually only spasm when somebody is moving one of my limbs, like range of motion, stretching me, getting me dressed, etc. Never just by myself, which happens to many people with spinal cord injuries.

The biggest problem that I have other than muscle spasms is pain, the worst being my neck (specifically my right side.) I’ve talked before about using Botox in my neck to help loosen my muscles. Although it only helps for about a week and then tightens up again. She also works on relaxing muscles in my neck, which is the main reason why I see that specific doctor. Also, my right arm is dropping out of its socket, which causes difficulty with range of motion and pain.

June 15 my spasms were intense making it difficult to do anything including range of motion, sleep, sitting in my wheelchair, etc. Also, when I was eating dinner on that Saturday night, I wasn’t feeling good. When my night shift nurse came on, she could tell something was off with me, so she took my blood pressure. It was 200/130, which could be a sign of autonomic dysreflexia (AD-something people with spinal cord injuries get when there is pressure somewhere, could be a wrinkle, needing to be cathed, bowels, etc.) or an infection someplace.

Even for me, it’s too high to handle no matter what it’s from, so she called 911 and off to the ER I went. Just another ambulance ride to add to my list. Along with my blood pressure being high, I had a fever and other issues acting like there was something wrong in my body (my nurses and I noticed something was off within a couple weeks before I went in.) I spent 5 days in the hospital, while they scanned my body head to toe looking for answers.

I had an MRI of my brain, CT scan of my head and another for my chest, abdomen, and pelvis. Also, they took blood, sputum and urine cultures along with multiple other tests. All of them came back to be negative, which was a mystery to me and my doctors. I was on 2 different IV antibiotics, which helped with any infection in my body go away even though they couldn’t find a source. This was the 5^th time since October that I’ve been in the hospital due to some sort of infection.

My body and I have had a rough year! Hopefully there are no more bumps in the road, but I can’t say that for sure. The past couple of days I have been experiencing AD, high blood pressure, more spasms etc. I haven’t found a reason “why” yet. Although I don’t like every entry to be about me being sick or in the hospital.

I’m looking forward to a beautiful summer. Except we’ve already had some high temperatures, including the weekend when I got home from the hospital, where the temperature was 93°F with a heat index of 110°F! Yes, I stayed inside; my body takes on the temperature surrounding me since it has a hard time regulating temperature (part of a spinal cord injury.)

Jenni

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

Pneumonia, Again

It’s been difficult these past 4 months. Last blog post, I wrote about being in the hospital due to pneumonia. Early December, I was feeling sick for about a week and spent a couple days in bed. It’s unusual for me not to get up in my wheelchair every day. I had low oxygen along with another seizure which brought us to the conclusion that it may be pneumonia again.

Since I couldn’t get up in my wheelchair, I went to the emergency room by ambulance. I was in the hospital for 5 days. The same pattern continued early January. I was also admitted for pneumonia, but I was in for 12 days instead of just 5. I ended up just going to the ER as it wasn’t urgent enough to go by ambulance. 

I’m always sad to cancel my appointments with ABLE. I can tell how much of a difference it’s making. I have gained a lot of experience and awareness of my body, including balancing upright using my core muscles. Over the past few years, my shoulders have been dropping lower in my sockets. One thing I’ve been doing differently at ABLE is focusing on a new set up to help put them more in place.

Other than the days I go to appointments, it’s difficult to go outside in the winter. This past weekend the temperature has been higher. If it’s above freezing, I start going for rolls with Everett. This week is supposed to be great as well.

Writing poems has taken all of my time up. You know how people are obsessed with Facebook, Twitter, Instagram, YouTube etc. I can officially say that I'm obsessed with allpoetry. Writing them and reading others is where I spend most of my time doing. I posted my recent poem below.

Jenni

Life as a Match

Born from a strike with a story to tell

scarring the wood that it’s made from

crackling through each sparking ember

a voice so fierce and wild with fury

Sharing mysteries from past times

behind shadows where ghosts can tread

the life of a single flame far too short

transforming a stick into lingering ash