What it Takes to Stay Alive
Updated: Oct 29, 2021
Let me give you a rundown about how my weeks normally go. They can get extremely chaotic, and it seems like we always have something going on, but hey, who doesn’t these days? It makes life interesting, and it builds character. Between taking care of Candace, the kids, the dog, the house, trying to stay in touch with family and friends, doctor’s appointments, and grocery shopping, and whatever else comes up, there have been times, I admit, where it has taken its toll on me. Over time, I have learned to find some balance, and we have all had to make some adjustments as a family. It’s been a crazy ride but it’s also been a great experience for me. I wouldn’t change it for anything.
Everyone I know keeps telling me, “You need to take care of yourself too.” I have gotten frustrated about this in the past and just want to say, “HOW? How can I do that when it feels like I hardly have time to do anything else or we are always traveling.” Lucky for me though, I have been able to find some ways to do that, just little things here and there, which has been nice so that even if my days feel like I am going and going and not getting any breaks, I can still say that I was able to do something for myself and not experience any burnout.
My days usually start at 4 am during the week. I wake up early and try to get the dog up with me too. Sometimes she complains but, in the end, I win. We go downstairs and I let her out to do her business and make myself some tea and give her water, and we go back upstairs to the office and that’s where I do some side work. I do freelance writing as a side hustle. (I also very much appreciate referrals and shares on social media). Check out my Writing Services page at http://www.kristinehutchinson.com
I work until 6 am when the kids get up and get ready for school, and that’s also when it’s time to wake Candace up for the day. Sometimes if Candace sleeps in, I can work a little bit longer, and if not, I don’t whine about it. I sleep in on Saturdays like a normal person usually does, unless we have something going on. If I don’t have work to do in the mornings, I take advantage of the time I have by getting some of the things on my personal to-do list done or use the time to brush up on my writing skills through my writing group memberships and online learning. I also recently became engrossed with audiobooks because let’s face it, who has time to read an actual book anymore? Certainly not me. I love reading and I love audiobooks. So, it works for me.
Mondays Usually on Monday mornings after the kids leave for school is when I do everyone’s pills. And when I say do everyone’s pills, that includes the dog’s pills too. We all have pillboxes that I fill with medications for the week. It usually takes me a large chunk of time to do just Candace’s, and then another chunk of time to do the rest of the family’s, including my own. There is a lot of prep work involved: We all have our own bag of pill bottles that I get from the closet that we designated as the “medical” closet and a shared supplement bag. I sanitize the table I use to do our pills on, and I clean my phone with alcohol wipes, and I put on nitrile gloves (my pill list is on my phone because it gets updated and changed a lot). I don’t mess around. I don’t want to put any of us, especially Candace and our oldest at risk because of sanitary reasons.
Tuesdays Something else that happens every week is Candace gets her IVIG infusions at home. If you need a refresher on what IVIG is, you can find it here. Her IVIG infusions usually happen on Mondays and Tuesdays (if holidays and other scheduling issues don’t get in the way). Her infusions are usually an all-day thing, and we have to schedule appointments around them. There have been times where we have been able to start earlier in the day to be able to make an appointment in the afternoon, or sometimes we have had to start later because of scheduling issues and whatnot, which makes for a long day for us as well as my wife’s infusion nurse. I take advantage of these days as well for my own doctor’s appointments and any running around I need to do, or even to get some things done around the house. I don’t like leaving Candace home alone and since she has someone we trust home with her, it makes me feel better to be able to schedule appointments during her infusion days, as needed. Being in the car a lot takes a toll on Candace usually, and I try to keep that from happening if I can help it. She stays at home with her nurse where it is safer and more comfortable for her.
It took my wife a long time to be able to get her infusions at home. Candace has a great neurologist who takes very good care of her and his Nurse has also done great work to make it so she could get her infusions at home. She used to have to make multiple trips per week to a hospital infusion center to get her infusions. Her trips used to be a lot closer before we moved to Northern Colorado, then they became very long trips. When we moved, I was still working my 40-hour job, and thankfully she was able to drive still, but she struggled from time to time with it. I would always be scared to death while I was at work whenever she needed to drive. Eventually, I was able to get FMLA through my previous employer, and toward the end of my employment when it became more and more unsafe for her to drive, I was able to take time off work to drive her to her infusions. Thankfully, we didn’t have to do this for very long though.
Candace has had a lot of blessings with the nurses that have done her infusions for her. I met her infusion nurse when we first started dating, and the team she has at the hospital is pretty amazing, and all of the at-home nurses that come to our house are great too. I am thankful for these people who are in this field who are really and truly in it to help people. They have even become our friends.
Wednesdays There is another infusion that Candace gets every 14 days, but she is unable to get this one at home. Thankfully she can get it at the same hospital where she used to have to get her IVIG infusions. From where we live now it takes about an hour and a half to get there and we are there for about 3 hours. The nursing team knows Candace very well and they have become friends and it’s a perk of going to this infusion every couple of weeks, something to look forward to (plus I get breakfast!). We try to schedule these infusions out as far in advance as we can, and it’s also something we have to schedule around for other appointments.
These weekly infusions are a priority. No ifs, ands, or buts.
The Daily Grind Throughout the day, every day, I have timers set for Candace to take her pills, starting right after she wakes up and takes her “first thing in the morning pills.” There is a certain life-saving medication she takes every 2-3 hours depending on symptoms, and a couple of other ones she takes every 4 hours depending on symptoms as well. I have an app on my phone that allows for multiple timers. Otherwise, I don’t know how I would be able to manage it! I hand her pills to her and I watch her take them and reset the timers for the next time. When the timers go off we usually stop what we are doing and I give them to her because they are THAT time-sensitive.
There are times where Candace has a hard time taking her pills too. Sometimes it’s because of the size, and sometimes it’s because her ability to swallow is very little or nonexistent. She usually struggles with the bigger pills anyways, but it’s even harder when she has difficulty swallowing, to begin with. There have been times in the past where it got so bad that I had to crush her life-saving medication and dilute it as best as I could in water for her to take. That made it a little easier, but we still had to be careful so she wouldn’t choke on the water!
I make a lot of pharmacy trips. Sometimes Candace is with me when I do. Whether it is on our way home from doctor’s appointments or while I am out and about running errands by myself, we usually end up at the pharmacy at least two times a week, and we bring home bags full of medications. We have a designated “medical” closet in our bedroom that we keep medications and supplies in. It has even filtered into our basement!
There is another life-saving medication that’s given by IV that I have to keep with us wherever we go, in case Candace needs it on an emergency basis, and there have definitely been times where that’s happened. We have a designated bag for it with all the supplies needed and for storage of the medication in a cooler bag (since the medication needs to stay refrigerated). She uses this medication for HAE, and if you don’t remember what that is, you can refresh your memory here. My wife’s symptoms come on very quickly, and sometimes I have a minute or two to administer this medication. This medication started out on a maintenance level and then turned into a rescue. I will never forget the couple of close calls we have had where I had to administer it quickly because my wife was having a hard time breathing and in one particular instance, she turned blue because she was literally suffocating.
There is something that Candace has been trying over the last year or so (that has helped quite a bit), and that is medical marijuana. There has been a lot of trial and error, but she finally found a combination of strains that work best for her. I have assisted her during a full-blown spasm episode from her SPS and I have SEEN it work before my very eyes, in a matter of minutes. That was when I became 100% sold on it. When the medical marijuana got her out of a full-body spasm like that, it saved us a trip to the ER, and it saved my wife from suffering for over an hour waiting for her medication to kick in for her body to finally relax. If you don’t remember what SPS is, you can click here. She has also used it for some severe nausea she has been experiencing, mostly because of some chemotherapy she was going through over the past few months but is no longer doing (thankfully).
When my wife was first starting to figure things out with medical marijuana, we made a lot of trips together to different dispensaries and she tried all kinds of products, and we were so happy and thankful when she finally found the one that works best for her. Now we only make trips once or twice a month (and have even made some friends along the way). I must admit, I used to be one of “those people” that was anti-marijuana, and I didn’t want it to be legalized in the state of Colorado, but I’m glad I was wrong and that it did become legal in this state. It’s been another life-saving option for my wife, quite literally, and I couldn’t be more grateful. Marijuana for medical use has been used for a long time in human history, and it only became an issue, legally, in the ’70s. Today, a lot of research is being done to prove all the benefits of it and how it really does help people who use it for medical purposes. It was my ignorance that chose to oppose it, but when I started being educated about it by my wife and educating myself as well, I started realizing how much it’s needed not just for her but for many people.
Whenever we think about leaving the house to go anywhere, even for a short trip, it’s a big endeavor. We have to get ourselves ready, and then we have to get things ready that we need to bring with us, which is quite a bit of stuff (and different things are done depending on the season). Candace needs a lot of help with getting ready. She has a hard time holding her arms up and she gets physically exhausted very easily. We have a chair for her to sit on so that she doesn’t use too much energy standing while getting ready. It helps me to support her better. After she gets ready, I go downstairs to get our stuff ready. She stays upstairs and rests on the bed before we leave the house.
Getting our stuff ready includes our food (because of the special diet we are on), making sure her IV medication is in its bag in case she needs it, that the bag is stocked, filling up our water bottles, and packing my backpack with her pink travel medication bag inside (and I check it regularly also make sure it's well-stocked). I also let the dog out to do her business and make sure she has water and make sure she has eaten if it’s around the time she normally eats. If the kids are going with us, I check in with them to make sure they have done what they need to get ready to go and make sure they pack a couple of books or some form of quiet entertainment, so that they don’t drive us nuts. Then when all of that is done, I go upstairs and get myself ready. When I am done with that, I load up the car with our stuff. I double-check to make sure the wheelchair is in the back (in case I took it out and forgot to put it back), and I make sure all the window shades are hanging on the windows due to my wife and our oldest’s sun sensitivity. If it’s summer and extremely hot, I turn on the car and get the air conditioning going, and if it’s winter I turn on the car and the heater as well as my wife’s heated blanket I got for her so her muscles wouldn’t stiffen up because of her SPS. She is the last to go into the car, and I go upstairs and help her bring the last of her things down to the car.
I started listening to audiobooks from my MP3 player while we travel, and Candace has also found ways to keep herself busy and entertained. I do my best to pack good food for us when we go out. There are certain things that we like to eat every day. Sometimes when I plan poorly, that’s when we end up making poor eating decisions and end up eating out somewhere. When I say “eating out” that usually means stopping somewhere and running inside to get food and eating in the car because it’s too difficult for Candace to get out of the car and support her body to sit at a table. Sometimes getting to a table is difficult too, so it’s just easier for me to get it and bring it out to her in the car. I made a joke about this and told Candace that I had never eaten in the car until I met her. And now we do it all the time! We know of a couple of places we can go to if we want to eat more than what is packed or if we want to “treat” ourselves. We do the best we can with what we have.
We do a lot of traveling for doctor’s appointments, especially since we moved. We made a choice to move where we did, and we absolutely love where we live. We definitely spend a lot of time in the car traveling though. In a single month, we can travel about a couple of thousand miles. Thankfully, most of my wife’s specialists are in the same system, and we drive to one place to see them all.
When we travel, we take my wife’s wheelchair with us. Without her wheelchair, we wouldn’t be able to get out of the house as much as we have been able to, and she couldn’t do a lot of the things she has been able to do. We have enough space in the trunk of the car for it to fit, but my next project is going to be getting a tow hitch installed and getting a wheelchair holder so that we have more room in the car to hold our other things. I have pushed my wife everywhere in that thing, I feel like. I pushed her around in Las Vegas during the weekend we got married. We like to joke about that a lot. I say, “If I can push you around in Vegas, I can push you around anywhere.”
My wife usually has multiple doctor’s appointments in a single week. There are times where we try to “stack” appointments if we know we are going to be in the area anyway. Sometimes we can’t do that. There are weeks where (other than infusion days) she has a doctor’s appointment every day and sometimes even multiple. They make for long days of sitting in waiting rooms and in the backroom for the doctors and getting asked the same questions every single time. Sometimes doctors are on time, but usually, that is not the case. When we finally make it to the back room, we could be sitting there for 30 minutes to an hour waiting for the doctor to come into the room! We also have to book appointments well in advance, not only because of the doctor’s schedule but for planning as well.
We rely very heavily on our calendars on our phones, as I’m sure a lot of people do too. We add each other to everything that goes on it so that if we are not together for some reason, we can still make plans if there is nothing else going on. I don’t know what I would do without my calendar. I mean, I could try and use a “real” planner but having to constantly erase and rewrite things that have been rescheduled and moved around would be a pain in the butt. In my phone, all that needs to be done is to edit the event, and BOOM, done. It feels more efficient and definitely saves time.
We try to get handicapped parking as much as possible, wherever we go, but it doesn’t always work out that way. On top of the long-distance traveling to see my wife’s specialists, the handicapped parking lot gets so full. We have to get there extra early just to find parking. Sometimes I have to drive all the way over to the other side of the parking area and park in the parking garage and push her all the way to the door, just to save time and not be late for her appointments. She tells me to leave her at the front door or in the shade so I can find parking, but I am never comfortable with that. Just the thought of it gives me a lot of anxiety. I just don’t want anything to happen to her and me not to be there to help her. So sometimes I need to make the sacrifice to keep her safe. I don’t mind pushing her around. In fact, I am happy to do it if it means keeping her safe.
At night, my wife sleeps with a sleeping machine called a Trilogy. A Trilogy is a non-invasive ventilator that keeps her safe at night while she sleeps. Sometimes she uses it during the day if she is really having a hard time breathing. She uses it because she has a lot of difficulty breathing at night (she has told me she has woken up not breathing before), it keeps her from being overly fatigued during the day and provides her with a sufficient amount of rest, and keeps her diaphragm moving so her body doesn’t have to work so hard (which also helps with the fatigue and allows for her to get a sufficient amount of rest). Every myasthenic is different, and the trilogy machine works best for Candace.
There are instances, however, where a bi-pap or c-pap would work better for another myasthenic. The Trilogy is a self-adjusting machine, unlike the bi-pap or c-pap. With a bi-pap, the air goes into Candace’s stomach, which defeats the purpose of the machine being able to help her, and the settings need to be changed all the time. Candace can’t use a c-pap because it will weaken her diaphragm even more, which also defeats the purpose of the machine being able to help. She has used a bi-pap in the hospital before, and it was a pain in the you-know-what because she kept complaining about how the air kept going to her stomach and how uncomfortable it made her and everything like that. And it always takes a Respiratory Therapist forever to come to her and adjust the settings, and we have called for them several times in a day (or night) before. During one of my wife’s MG exacerbations (here is a refresher on MG), she was in the hospital for over a week and she begged them to send her home with a Trilogy machine. She found out about one of these machines through a friend of ours.
By the grace of God, they were able to get orders to have one delivered to our house. A Respiratory Therapist came to our house and showed us how to use it, and while she was resistant to using it all the time initially, we are both so thankful that she has it now, and that through trial and error, she has the correct settings and mask in order to keep her the safest when she can’t breathe during the day and when she sleeps at night.
The Lord has blessed us with amazing medical equipment this year. We recently got a chair lift installed on our stairs in our house so that Candace can get up and down the stairs in a much safer, and more physically energy-efficient way. We had been waiting for months for this to be installed. It used to be so scary and unsafe for my wife to go up and down the stairs. Going down the stairs, I would have to stand in front of her so she could use me as support, and so I could catch her if she got too wobbly and fell forward. Going up the stairs, I stayed behind her for the same reason. It always took a toll on her physically. By the time she got down the stairs or up the stairs, she had used up all her energy. If we were going somewhere, she would need to rest in the car, and if we were home, she would be in bed resting and trying to recover JUST from going up the stairs.
Candace has been trapped upstairs in our bedroom, and the only time she goes downstairs anymore is if we have to leave the house to go somewhere like a doctor’s appointment or to see family or something like that. I bring her meals to her and we eat together, and I do what I can to make her comfortable and make sure she has everything she needs, and that I spend quality time with her also. Physically, she is having a harder time now than she was before we got the chair lift, and we are so thankful that we have it in our home now.
When we don’t have anything scheduled on a given day (which can be a rarity), my wife and I love to lounge around with our dog, Sammy, and watch some shows on Netflix, and it gives me a chance to do some things around the house like laundry and some cooking and cleaning and all of those fun things.
We do what we can to live as normal a life as possible, given the hand we have been dealt. Some days are harder than others, but we always make it through. We have things that we are looking forward to in the future, and that we hope to make happen someday. It’s all in God’s will, not our own, and we just try to take things day by day and thank God for each day we are given.