When you fall off the wagon

We’re talking a proverbial wagon. Don’t worry; we did not go farm this weekend or anything. Although that would have been a great workout, had we done it.

A year ago, Jeremy and I were both very very dedicated to our health. As a result, he was at the lightest he had been in 20 years and I was at my strongest. We planned our meals ahead of time; we planned our exercise and followed through; we took our medicines daily; we spent time regularly doing self-care. All aspects of our life were kept at our healthiest options.

In March 2016, our youngest had some mental health issues start to take over his life. For the next 6 months, our life was filled with massive stress, doctors, and cops. The stress was too overwhelming for both of us. We doubled our counseling sessions. Jeremy and his doctor agreed that he probably should increase his mood stabilizer medicine. As a result of increasing too quickly, Jeremy got a dangerous rash and had to go off of the medicine that had worked for 2 years. This medicine is mostly to treat his bipolar disorder by keeping his moods in a “normal” range and help him focus better.

The new medicine to replace it was Lithium. Jeremy was on Lithium while he trained for the Twin Cities Marathon and I was training for the Rails to Trails half-marathon. A med change when there is little stress is hard. Noticing side effects and getting through the mood swings can be overwhelming. It’s triple hard when you have something that is a goal or some kind of stress in your life.

He made it through the marathon. He even had a pretty good time, even though he hadn’t trained as hard as he had hoped. For those that don’t do long distance races, there’s important information that you probably don’t know: the after crash of a race. Think of it like another life event: a wedding. You plan for months, you spend hours every day thinking of this event and planning for it. You may work to lose weight, make decorations, and pick out the perfect dress/DJ/location/cake. The day comes and you have a major high. You love your event and it goes off without a hitch. Afterward, you’re faced with a slight depression. You spend hours thinking “what do I do now?” and “There’s no purpose to my time anymore.” You looked forward to this event for months and now it’s just over. The same  happens with athletes after a major race/game/event.

Jeremy had that happen. On top of the medicine changes, Jeremy went through a pretty extreme depression. We don’t know if it was a side effect from the Lithium, a outcome from the kid stress, a downswing from going off of Lamictal, or the after-race crash. All we know is that his thoughts started racing, his self-talk got dark, and he became despondent about life in general. There were days that I had to help him get out of bed for work.

Needless to say, he was not doing any kind of exercise at that time. I was also still untreated for my depression. Between the two of us, it was hard for us to do enough thinking just to make ourselves eat, shower, and work each day. Eating healthy was the last thing in our heads. We were lucky if we made frozen pizza or mac & cheese; we weren’t even going to attempt salads.

So, what happens when someone is unable to be physically healthy? In our experience, not only does their physical health deteriorate, but their mental, spiritual, and financial health all suffer as well. It stands to reason that it’s hard to get out of that spiral. We had to keep going to work and we knew it. Thankfully, we were able to push through in that area.

We’re both pretty grateful that we have found some treatment that helped. I was put on Fluoxetine (Prozac) in December. It made it lots easier for me to get out of bed, do the work I need to do, and help him with what he needs. He also went back on Lamictal in December. This needs to be a very gradual process. Even though he is still at a very low dosage of this mood stabilizer, getting off the Lithium seems to have brought him up out of the suicidal thoughts and deep depression. We are functioning again, that’s the important thing.

Something to realize though is that “functioning” is not the same as “thriving”. It was something we talked about when we walked out on the land we plan to park on this summer. Jeremy’s lamotrigine dosage is still low enough that he’s not 100% stable. Counseling helps and the low dosage does help; it’s just not ideal yet. We are both about 30 lbs heavier than we would like to be. Neither of us are exercising as much as we need to. We’re still not eating as well as we’d like. Now that we’re functioning, we can start to address these issues that keep us from thriving. We may soon get back on track to be healthy in all parts of our life.

We start a new eating plan today with Clean & Simple Nutrition. We are hoping that a change in nutrition will give us a bit of a boost toward motivation. Within the month, we will both start training for our next races. We hope that you take some motivation to keep going, to get started, and to get healthy from our story. Stay safe and we’ll see you on the road.

Advertisements

A Mexican Nightmare… Finale

After Day one, things got better. In day 2, we went to see the doctor. My client got approved for the treatment that the doctor had first suggested. He even started treatment later that day.

Also, during day 2, we found a company that was willing to build a ramp for his wheelchair to be able to take some tours. This is a big accomplishment in Mexico. There are very very few people with wheelchairs there, much less people with power chairs. We were lucky to find a company with caring staff that built a ramp just for my client and took the middle seat out of their van so that we could go around San Miguel.

Day 3 we changed some money and got used to our surroundings. Day 4, my client got a double dose of treatment and we took a tour of the city. Our first stop was Atotonilco, a church with a rich history and great paintings on the ceiling. Our tour guide told us that it is considered the “Sistine chapel of Mexico”. It was beautiful. Then, off to a local high end artist market. There was nothing there for me, but my client got his wife a very nice necklace. While he shopped, our driver and I talked some. We got to know about each other’s families and life outside of this day.

After shopping, we returned to the hotel. My client got another treatment. Oh, did I mention that the doctor made “house calls” to our hotel? It was much easier than trying to treat my client in his office, as his office was on the upper level with no elevator. It was very nice of the doctor to be willing to do this. I know the concept of a doctor coming to your  house or hotel seems foreign in this day and age, but this doctor still does it.

I finally go to do some authentic shopping at a large market that evening while my client got a shave. It was an alley littered with vendors. Every ounce of extra space was taken up by booths filled with handmade and reproduced souvenirs and Mexican goods. Every vendor took USA dollars and would give change in pesos. About 75% spoke just a little English. It was nice to find a few things to bring home to my family and friends while trying out my Spanish.

Saturday, day 5, was probably the best day of the trip for me. My client was pretty tired from his week. He wanted to rest up for the next day, which was a travel day. While he rested, I got a spa treatment. For 155 minutes, I got a body scrub, a mud wrap, a facial, and a massage. I fell asleep half way through, which almost never happens. It was glorious. Thanks Norma for a great treatment. Afterward, I went to get some fried chicken for supper and hit another, smaller market. It was much more unique than the previous day. I found some great gifts to bring back, as well as some of San Miguel’s wonderful leather in some wallets and a bag.

All in all, I felt very at home in San Miguel. Leaving on Sunday was hard for me. For one, I knew that things would probably not go swimmingly on the flights. Second, I did not want to return to the -20 degrees of Wisconsin. Third and finally, I was really starting to feel like I was hitting my stride in touristing.

We left the hotel at 1pm. Thankfully, we got our sweet cab driver from the week to take us to the airport too. It was a leisurely drive that we stopped to get a melon on and enjoyed the scenery as we went. That was the best part of our return trip. Thanks, Freddy, for a great trip. If ever you get to San Miguel, look up San Miguel Magico tour company. They were more than accommodating and very helpful.

The airport was a mad house. The day previous, there had been a snowstorm in the Midwest USA. That meant that many of the flight crews were stranded there for extra days, which delayed everything. The Leon airport had multiple cancellations and every single flight was delayed. Yikes! On top of that, their baggage check area is the same as their customer service. As I said, madhouse. Our flight was delayed 2 hours, moved to a different gate, and renamed. We were just happy to be able to have a flight at all. But because of our delay, we missed our connecting flight by 30 minutes. Ugh. This time, we had to wait for them to bring the wheelchair to us behind immigration and customs before we could go to the hotel. It took over an hour for them to bring the wheelchair to us. At one point, they even LOST THE WHEELCHAIR!!!

For those of you that know me well, you know that I do not lose my temper often. In fact, I tend to be very very chill and patient. So much so that it is annoying to those around me. When they said they couldn’t find this chair, I lost my temper. Not just a little bit; my client was visibly a little scared of my new stance. This is not a manual chair that folds and can be stowed somewhere under something. This is a humongous 350 lb specialized piece of equipment. Eventually, they found that the staff from the tarmac had taken it to the domestic side, rather than the international side.

We got the chair back after going through immigration and customs, since they would be closing soon. Then, on to customer service again. They were swamped again, for the same reason that Mexico was. We waited. Once we were in customer service, we mentioned our horrible time last time with Houston airport. They gave us a special person to help us with our damage claim. Except there wasn’t really a damage claim. There was a number that lead to a confusing bit of badly worded explanations and no names of who to contact. We found that the number the supervisor had given us the week before was to the woman we were now talking with. This, along with updating the badly written damage claim, took a few more hours. By the time that we were done with all of this, it was 2:15 in the morning. We had to be back by 8 am to get ready for our 10 am flight. If we had decided to find a taxi with a wheelchair ramp or lift, then the hotel room we were supposed to go to, then transfer to the bed, then back up in the morning, find a taxi back; we would have maybe gotten 2 hours of sleep.

We decided to stay the night in the Houston airport. It was cold, it was uncomfortable, it was ridiculous. Every 30 minutes or so, I would wake with another idea of what could be done to gain back some dignity and care. I called about 10 numbers that night searching for information and help. I took a picture of my client in his wheelchair sleeping in the Houston airport. It shouldn’t be like this.

To top off my anger, at midnight it had become my 34th birthday. I was supposed to be home shortly after midnight. I wanted to sleep in my own bed. I wanted to be held by my husband. I wanted to wake up refreshed and enjoy my birthday.

A young girl traveling with her family was tired of being in airports. She didn’t speak English, so I told her in Spanish that it was my birthday. She felt bad for me and congratulated me on my birthday. Her mother and I spoke a little in broken Spanish and English. I told them to call me when they got as far as MSP. I’d love to see them again.

16 hours in an airport or on a plane on my birthday was not my idea of a great birthday. 1 hour of sleep did not make it a really fun day.  It absolutely could have been worse. I had my health, my client was not in danger, and my husband knew I wasn’t going to be home yet. While his anxiety was high, he also was able to understand that I was safe. It was an adventure that I came out of.

I came out of it with first class seats, some knowledge of how to get my client a possible refund on his seats, and knowing some helpful people in 2 states in the US and at Leon, MX BJX airport. Adventures like this don’t usually come easily. It’s the times that you roll with the punches that things become real adventures.

As we embark on our next adventure, I’m even more prepared to roll with it. So, if you get a chance, come visit where ever we are at. Good luck with your travels and we’ll see you on the road.

A Mexican Nightmare… Part 2

When your connection is missed, as ours was, most airlines will put you up in a hotel if it’s overnight before the next flight takes off for that destination. Remember with a wheelchair, you need to check ahead of time if it’s an accessible room.

So, here, we wait for the power chair to come back. That  means that tomorrow we go through all of that again. If we could have gone without it, we probably would have just to save the hassle.

Boy, were we glad that we made them get the chair. When they finally brought out the power wheelchair, there was a collective gasp from my client, myself, and the attendant that the airline had sent with us. The chair was folded out all the way flat. You could see spots where the cover was cracked and one of the controllers was missing.That left controller was, thankfully, for the tilt of the chair. On the main controller on the right is where the computer and driving options are stored. The supports for the armrests were lose and the headrest was extremely off center. Thankfully, the chair was still usable by the computer override.

The extensive damage brought out 4 levels of management to deal with it. While I was on the phone with our Mexican taxi company and our hotel for the week, my client spoke to the managers present. When I turned back around, there were Italian suits and placation vouchers all around. We each got $400 for future flights, a new voucher for a free cab ride, and informed that a technician would come to our hotel room to try to repair the controller. Our attendant was instructed to help us get all the way to our hotel room. So we stepped on the Houston subway to go to the Airport Marriot. It was a nice room and we were well taken care of there. After so much excitement, we went to bed fairly early.

The next morning, we woke early. We called the doctor in Mexico to inform him that we had flight issues and would be a day late. We called the number given to us the night before for a repair technician and got no answer. By the time we got done with the room, the breakfast was over, so we got a small coffee and some scones in the hotel coffee shop.

After going through the excitement of check-in and TSA again (we had already checked our bag the night before), we went straight to the gate. At the gate, we informed the gate attendant that we would need an aisle chair and we would need to talk to the baggage attendant that would be getting the wheelchair. They came up to the gateway and were given much better instructions. We made it so all they had to do was push the chair, no power necessary. Then the 3 hour flight to Leon.

In Leon, the Mexican airport dealt very well with helping us with immigration, customs, and getting the chair back. The chair was in the same shape when we got there as when we left. They brought it out quickly when we were ready to get it. Here’s the thing, though: Mexico is NOT a very accessible place.

The number one issue we had was that our prearranged cab ride was for the day before. And they weren’t here for the rearranged pickup on Tuesday. We got an email from them saying that, because of the “no-show” the night before, they wouldn’t be there at 4 today. So, I guess it turns out that my horrible grasp of the Spanish language really did leave us fairly stranded. The Airport transport gave us a “free” cab ride voucher and set us up with the AT supervisor… who had no idea what to do with us. Mexico being as inaccessible as it is, the AT did not have a van with a ramp or lift. After about an hour, he says, “I think I have something. 15 minutes” We wait and a full sized van pulls up. My client is transferred into the van seat with very little supports. The chair is rolled to the back of the van. 6 AT employees work together to lift the 350 lb power wheelchair into the back of the van. No one puts the brakes on the chair down.

2 miles down the road, my client and I realize that the chair is rolling around in the back. Time to try my Spanish again. I convinced the driver, who spoke no English, to stop quickly so that I could climb into the back and stop the chair from rolling. The rest of the ride went well for my client and I.

We arrived at the hotel at around 6pm. Between hotel staff and the van driver, we got the chair unloaded and finally checked in. The room was accessible, beautiful, warm, and best of all, had nice beds. Finally, “day one” was done…. a day and a half later. This is akin to what must have happened to the person who first said “The important part is not the destination, but the journey.” This journey is not yet over… you’ve only heard the beginning.

Check in tomorrow for the rest of the trip.

A Mexican Nightmare… An education

I talked in Part 1 about all of the preparation I did getting ready for a working vacation on a client’s medical travel. This is a first time for me. I’ve done 14 years of personal care work, but never had a client pay for me to travel like this before.

So, we left Monday, Dec 12 with high hopes of a good trip. Our cab came just a tiny bit late, but still got us to the airport 2 hours early. Our check-in at MSP went without a hitch. Checking our bag in was 5 minutes. TSA spent a total of 8 minutes on testing the wheelchair. There were almost no lines and we were even able to get a snack on the way to the gate.

Here’s where we need to go over the difference between travelling with a wheelchair and without one. Here is my experience without a wheelchair: You get to the airport 1 hour before take-off. Check-in takes a maximum of 5 minutes, bag check another 5-10 minutes, TSA maybe 10-15. If you’re running over on those, you’re totally able to run down the stairs, up the escalator, and through crowds to get to the gate, where they will be loading by this time. You board just by handing your boarding pass to the gate attendant and you find your assigned seat. You have no need for anything extra beyond a seat and a spot for your carry-on. Total time from curb to boarded: 42 minutes.

Now, add a wheelchair: First off, the preparation is so much more. Before you buy your tickets, it is prudent to call ahead to the airline and see what size of aircraft is right for your needs. Wheelchairs, especially power wheelchairs, often take up more space and need extra support from staff to get the client on and off the plane. So, you spend an hour on the phone with the customer service of your chosen airline. If you “shop around”, you need to do this more than once. You also should find an assistant to come with you to help carry bags and direct the airport staff as to your needs. You’ll be tired, you don’t want to do this yourself. Then, you need to get to the airport at least 2 hours early. Here’s why- Check-in takes 5 minutes, as usual, with one extra click and double checking that there’s some special accomodations. Bag check takes 10 minutes easily because you have to explain to the check counter that you also have a power wheelchair and ask them to call ahead to make sure there’s an aisle wheelchair available. TSA usually takes between 20-40 minutes, depending on how your prep went. Sometimes, you can do TSA Pre check, so that helps cut down on time. If you have dry cell batteries (which many modern wheelchair companies are going to) or you have a manual chair, you cut down the time a little too. But, TSA needs to wipe every surface of the chair with a small tab that tells them if there’s explosive or drug residue on the chair. They also need to pat down the inhabitant because they’re unable to see any bulges that may exist. After TSA, let’s say you need the bathroom. You need to wait an extra 5 minutes for the special stall. Not only that, if there’s stairs, escalators, or crowds, you’re going to take double time to get to where you’re going. Elevators are notoriously slow; picking your way through a crowded terminal can be even worse when people’s eye level is above your head. By the time you get to the gate, you hope that it’s still before they start boarding. You have to pick your way right up to the gate attendant and warn them that you’ll need an aisle chair. Often, no one was informed of this, even though you’ve taken proper precautions. They call for customer service to send down an attendant and an aisle chair. You wait until the gate is opened and are the first person boarded. Hopefully, when you got your seats, you thought to put your assistant next to you. If not, you’ll have to discuss that with the gate agent also. First, you roll to the end of the gateway where the aisle chair and attendant are waiting. You are transferred into the aisle chair. Your assistant informs the baggage supervisor in attendance about how to move the chair. Your assistant also sets the chair up for travel, often having to lay the chair out flat, unhook controls, or remove pieces that may fall off or get damaged during transport. (Think doubling your carry-on) The baggage crew takes your chair while you pray that they were really listening and pass on the information. You are rolled into the plane by no less than 2 attendants, plus your assistant. The three of them coordinate moving you to a seat depending on where your seat is. We recommend an aisle seat; there’s less moving to get to that one. They take away the aisle chair. VERY OFTEN, your flight will be delayed because of maintenance. Do not be fooled; this is often because someone is trying to move your chair and have no idea what they’re doing. Ok, you finally leave and everyone’s boarded and ready to go. Time from curb to boarded: 156 minutes (2hours, 36 minutes).

Now, you guessed it, you’re only on the plane. Most people just debark and you’re done once you land; 5 minutes. Nope, not when travelling with a power wheelchair. You have to wait until every other person has gotten their stuff and gotten off of the plain. The flight crew has to call ahead and warn the destination that you need an aisle chair and an attendant for help. You wait for them. They get there and you reverse the process. If you have a connecting flight, it is my opinion that you should leave at least 4 hours between flights. Yes, you may be sitting for 3 hours if EVERYTHING goes correctly. But, you are much much less likely to miss that connection. Less than an hour for connecting with a wheelchair is just tempting fate. Hell, 2 hours even tempts it a little. Get ready to tempt fate over and over again if you’re travelling with a wheelchair.

This last week, we dealt with all of these and more issues with our travel. Next, I’ll tell you all about these great adventures in purgatory.

A Mexican Nightmare… Part 1

I warned everyone that I was travelling last week. Considering the week I had, I think all of my previous travels have been too easy. I’ve traveled with wheelchairs before, young children, and very very old people. All had some SNAFU, but nothing prepared me for this trip.

I was offered a few months ago by a client that they needed a caregiver for a medical travel trip to Mexico. When I said “Yes!”, I didn’t know where we’d be going, what kind of treatment is was, or what kinds of support this client would need. All I knew is that they were planning to pay flight, hotel, and basic food, as well as paying me some kind of salary while we were there. I was expected to cover any extra snacks, souvenirs, and entertainment I might use. And that’s all I knew.

I ordered my first passport, started preparing Jeremy, and started researching dos & don’ts. Don’t drink the water, check; don’t go out in the country alone at night, check; check the travel advisory for your itinerary, um…. where are we going??  A few weeks before, I got some answers to the unspoken things in this agreement. None of the conditions sounded adverse to me. I found out we were going to San Miguel de Allende, Guanajuato, MX (most commonly known as San Miguel). I learned it is a colonial town with a rich history, strong tourist business, and almost everyone knows some English. Win!! It sounded from the information I could gather that it was to Mexico City basically what the Hamptons to New York City; a quaint, well-cared-for town where wealthy people go to “weekend” or “summer”. I got excited.

I learned that my client needs full care for transfer and hygiene. No big deal, I’ve done this job for 14 years. For those that don’t know, I started my official life as a caregiver when I was 19. I inadvertently took a job with a personal care/group home company. All I  knew was that I wanted a job and they were hiring for better pay than most places. Since then, I have worked for 7 different companies, with over 100 different clients, and in 4 different states (I guess you can say 2 different countries now). I would consider myself an expert in the care and support of people with disabilities, especially those who deal daily with a power wheelchair or mental illness. So, the requests of transferring a large client, washing their body including genitals, & assisting with daily meds were all agreeable to me.

As I found out more about what my new client needed, I also learned about why we would be travelling. My client was going to Mexico to obtain a stem cell treatment. This was extremely interesting to me. My spirituality and academic degree allow me multiple perspectives on this subject. Having experience in DNA Analysis, chemistry, and a little biology, the concept of using basically “blank” cells to improve the health of a person is fascinating. The controversy over harvesting techniques and “acceptable” types of cells is also a motivating topic. The treatment would be administered by either intravenous infusion or intramuscular injection. I found that my client wanted the intramuscular treatment. The whole process was a geek heaven for me.

Another little tidbit of information I got before our trip was the weather: San Miguel is pretty much comfortable all year round. In May, they tend to have high temperatures that are just barely warm for some of us (80-90 degrees Fahrenheit). In “winter” (which is now), the temperatures are mid-70s F during the day and mid-40s F in the overnight. I think I may have fallen in love with this place. We went on our trip from December 12-18. This year, this week turned out to be -40 F with the windchill. Ummmm…. No. Very glad to be gone in Mexico during that time.
All in all, the trip turned out to look very very good from the front side. I loved the idea of doing some work, then some touristing. It gave me a purpose to travel. I liked that idea. Before we left, I felt significantly prepared for my trip.