Monday, November 15, 2010

Ambulance Ride

These posts are meant to help people understand what life is when your significant other is a quadriplegic, and if anyone needs any advice or information they can contact us.

Last night, after drinking about 20oz. of Crystal Light, Stephen asked for some soda in his sports bottle. The carbonation caused it to spill out of the straw part onto his lap. In helping get him out of the wet clothes he mentioned that he felt he was going through some Autonomic Dysreflexia which is specific to people with spinal cord injuries. It is kind of like a warning system that the body has which lets the person know that something isn't right. It causes a severe and almost instant rise in blood pressure, and- in severe situations that go unresolved quickly- can lead to stroke or death. Very scary. Stephen has had this before, but often it is mild and usually tied to something with his bladder. A kink in the tube, a full leg bad, or other relatively simple fixes are usually all I've dealt with. Last night was a bit different.

After telling me he was feeling unwell I noticed that his leg bag was totally empty and he'd drank a lot of liquid almost an hour before so some of it should definitely have passed. I figured it was the bag, and disconnected it to put a new one on, but when I did still nothing came out of the extension tube, so I took that off as well. Stephen has me quickly gather supplies to do an irrigation by forcing sterile saline backwards through his tube to clear any blockages. I filled the plastic syringe and pushed LITERALLY with all my might and couldn't get the saline to pass. At this point Stephe's face was getting red and he was complaining a bit more, so he told me to find a smaller plastic syringe to pull out the saline bubble that holds his suprapubic catheter inside of him... which would be that he would pass urine through the hole in his stomach and therefore (though a bit messy) he would surely feel better right away.

The catheter borderline rocketed out of him, followed by a quick gush of urine... and then nothing. The instant relief was short lived. We had been afforded time to call his parents to bring a new catheter to insert (since I didn't have one), but then he started feeling sick again and I was unable to get urine out. Stephe was almost yelling in pain and was as red as an apple. That's when we called 911. If you are EVER in doubt in this situation, call 911. I gave the address, and then ran around gathering clean clothes, and making a list of his medications and allergies in case he lost consciousness.

Thankfully the hospital is right down the street, so it was a short ride. He began to pass urine on the ride, and then more in the hospital. After soaking a huge stack of paper towels, a regular towel, and 5 washcloths he finally was cathed and STILL passed 300+ml (about the size of a soda can).

Once everything was done Stephe felt a lot better. We had a really wonderful nurse who was such a caring person. She asked us about our story... how we met... etc. Before we left she said to us, "I can honestly say that you guys made my night worth it."

If you care to know more about Autonomic Dysreflexia, please see the link on the side of the page.

With love and gratitude,

Tuesday, November 2, 2010

Two Wonderful Years

These posts are meant to help people understand what life is when your significant other is a quadriplegic, and if anyone needs any advice or information they can contact us.

Today marks Stephen and my two year mark of being together. We celebrated with dinner at a cute little french restaurant, which neither one of us was dressed for, but it was lovely anyhow. We had taken a nap after we both got off of work, so we were in sweatshirts and athletic pants. I actually looked at us and laughed at how we were dressed. We decided to actually dress up for another date this weekend.

When I first started seeing Stephen I wanted to know more about what my life might be like with someone who is a quadriplegic. I read the book "Tumbling After" (there is a link on the left side of the page). It was really nice to hear someone else's story, and I actually wrote to the author...and she wrote back to me to commend me for taking on a relationship that would have such challenges (though, to make a note, her husband was completely immobile and she had to do everything).

I get 'commended' a lot.... people tell me that Stephen is lucky, or tell me that what I'm doing is admirable. I never know how to take this, because I know that people don't mean it in an insulting way. The truth is, I wouldn't be in this relationship if I didn't feel lucky, or if Stephen didn't enhance my life. Do I sometimes get frustrated? Absolutely. I get tired, and feel overworked and sometimes I feel like a maid. I get upset when I'm in the middle of running around and Stephen asks something of me and I feel like I can't physically or mentally do anything else. AND THEN I LOOK AT HIM and realize that I wouldn't do it for anyone else, and that his intention is never to ask too much of me. And those nights when I sleep alone I miss him terribly. I am just as lucky as him. Not everyone finds someone that they know without a doubt they will love unconditionally...EVEN when there are moments of trial. And not everyone is lucky enough to find someone to love them unconditionally, even in moments of grumpy frustration.

Stephen and I are celebrating two years of loving each other, putting up with each other, laughing together, growing together and at the end of each day being happy with one another. That's the long and short of it.

Monday, November 1, 2010

I'm His and He's Mime

These posts are meant to help people understand what life is when your significant other is a quadriplegic, and if anyone needs any advice or information they can contact us.

For Halloween this year Stephen and went up to Pennsylvania to visit a bunch of friends and party with them. We decided for our Halloween costumes that we would go as mimes. I drove Stephe's second wheelchair van, and he road in the place where the passenger seat normally would be. We use straps that attach to his wheelchair to secure him. The other wheelchair van is one that he drives from his power wheel chair. He simply drives up the ramp and his chair clicks into a locking mechanism on the floor.

Anyhow, we planned to stay at my friends house, and since the basement is finished and has a bed and is easily accessible for Stephe I didn't even think to bring his manual wheelchair. Apparently neither did he. The 'oh crap' moment happened when we realized that the party was upstairs and we didn't have a chair to carry him up in. This is a hurdle I used to have to overcome when we first started dating and I lived in an apartment complex up a flight of steps. Just like I used to do (though only on rare occassions) I got Stephe to the edge of the bed, sat right in front of him, and he put his arms around my neck and I piggy backed him up the few stairs and plopped him onto the couch for the night. Him not having most of his right leg (amputated mid-thigh) is a blessing and a curse in these moments because although it certainly makes him lighter, it doesn't leave me much to hold on to.

Stephe and I had a blast, but the only thing he wished he could've done was have his chair so that he could move throughout the party more. Other than that, it was a great time.

Monday, October 25, 2010


These posts are meant to help people understand what life is when your significant other is a quadriplegic, and if anyone needs any advice or information they can contact us.

I talked with Stephe about posting on this topic, and he said he was cool with it just so long as I explained that a Catheter used with a urine bag (attached to the leg) is different from a colonoscopy bag (for fecal matter). Stephe has the former, but not the latter so I don't know anything about colonscopy bags. If you have information, please feel free to share as it might be helpful to someone else.

A catheter is something that many paralyzed people use. Considering that paralysis may be complete (can't feel anything) or incomplete (can feel their body but can't move it in certain areas) people with paralysis don't always know when they would even need to use the rest room.

Stephe uses a Suprapubic Catheter, which means that rather than the catheter needing to be inserted via the genitals, he has a tube that goes directly into his bladder through his lower abdomen. He definitely prefers this method over the alternative.

There are a lot of pros to having a suprapubic catheter, but definitely some considerations. I've posted a link on the left side of the page for anyone interested in knowing more. The image on here was used from that website.

Sunday, October 24, 2010

Wheelchair Yoga

These posts are meant to help people understand what life is when your significant other is a quadriplegic, and if anyone needs any advice or information they can contact us.

Yoga is something that I do occassionally. It is also something I assumed that I'd always have to do alone or with someone other than Stephe. I've heard of people in wheelchairs doing Tai Chi... but YOGA? Well, apparently I was wrong, but that's a good thing! This past weekend at the Green Festival in DC, Stephe and I visited the Yoga Tent... which wasn't really a tent, but more of a designated space with carpeting where people could wander off of the path and engage in yoga. I figured I would do this and Stephe would go on his merry way and we'd meet up later. Turns out he needed to stretch too, and it was a really cool moment when- while seated in a torso twist- I hear the yoga instructor behind me encouraging Stephe in his twist. I hadn't realized he was participting, but he was. Granted, Stephe won't be doing any Downward Dog any time soon, but it's now something we've talked about trying to do together with modifications. How very cool!

Sunday, October 17, 2010

Roll In Shower Time!

These posts are meant to help people understand what life is when your significant other is a quadriplegic, and if anyone needs any advice or information they can contact us.

Stephen and I purchased a house about two months ago. I never would have thought that in the short span of two years we would be engaged and own a home... it really is a dream come true.

We are the 3rd owners of our 42 year old home, and it's in wonderful condition (other than the occassional HIDEOUS border or pastel green tile). Stephen's dad was nice enough to build a ramp for us so that Stephen can get into the laundry room, and we have metal ramps in the front for now.

One of the big changes we are making to the home is the bathroom in the master bedroom. Stephen has been in between homes for the time being because both bathrooms were VERY tiny. Stephen couldn't even have managed to get his wheelchair through the bathroom door, let alone actually move around or use the bathroom.

We consulted several people to get quotes on the redo-ing of the bathroom which included losing half of our master bedroom closet for bathroom space, and bumping the entire wall into the room about a foot to make as much room as possible for Stephen to get into our new roll in shower. One guy never called us back, the big company gave us a $34,000 quote (yea, um.... no), and the third guy that we went with (who was recommended by a friend) is doing it for 9,500.

Our shower will be huge with a 36 inch wide door, and Stephen and I had fun shopping for tiles and hardware for the bathroom. We are going with a slate and stainless steel look. The tiles on the floor will be smaller since it's a roll in shower and the floor has to slope towards the drain, but the wall tiles will be large. Six inches on either side of the shower will have a small lip to make sure water doesn't get out from the edges of the curtain. Our light switch will be lowered a little so that it's easier for Stephen to reach, and the actual switch will be one that's easier for him to use. Our sink will be just a counter with no storage space underneath and our counter will be higher, so that Stephe can roll underneath easier. We will have a grab bar next to the toilet, and two in the shower. Our shower heads will be at 'regular' height with an extra hose attachement that can slide up and down so that Stephe can use it.

I might not have the nice huge tub I've always dreamed of, but I'll have a beautiful shower/bathroom and hey... that ugly green tile had to go anyhow.

If you have any questions please feel free to leave a post or to email me.