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Rehab Week 3

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As my third full week of cardiac rehab is coming to a close, I wanted to take a moment to reflect on my experience in that time. There are changes happening for sure, but not all of them are ones that I expected. When I started rehab, I expected to get stronger, increase my stamina, and maybe (hopefully) lose some weight. I didn’t expect my mental health to improve, my family to join me in my quest for better health, or if I am honest, to be very successful. I was hopeful when I started rehab but it felt similar to hoping there would be a pony under the Christmas tree. I might have really wanted it, but I doubted I would really get it. I am so glad to have been wrong. 

A big part of cardiac rehab, and a part that I was pretty sure I was going to stink at, was getting my diet under control. There are a few things where diet is concerned that I am excellent at, for example, I am really, really good at watching my sodium intake. It is a rare day that I go over my allotted 2000mg and if I do it isn’t by much. Edema fears my sodium tracking skills. What I am not (or wasn’t) good at, is tracking calories, fat, carbs, anything delicious. My thought has always been a bitter one, “If I have to give up salt, I am not giving up anything else.” and I would add unsalted butter, and eat sugary snacks with reckless abandon. I knew when I signed up for rehab that this attitude would have to change, if I was going to give this opportunity the best chance to make me feel better it couldn’t just be three days of exercise a week. Which is why, 25 days ago I started using an app called Lost It! I feel like they should start paying me because I sing its praises to anyone who will listen. I have religiously recorded every food that passes my lips, and I am happy to report that out of 25 days, my calories have been under budget every single day!

Reasons I love the Lose It! App:

  • Losing weight is gamified in a way I personally enjoy, for example each day I log all my meals, it contributes to my streak. I currently have a streak of 25 days and I will be really sad if I mess up my streak before day 100. 
  • You can buy a subscription for life. Instead of paying $50 bucks a year, you can pay $120 bucks and have the app for life. When you are making a lifestyle change, this option helps solidify that decision. I am not just doing this for the year I am subscribed, this is forever. Perhaps it is just the way my brain works but that distinction makes a difference. 
  • They have a TON of verified food options, be it fast food or products. Verification means the nutrition information that they have comes straight from the horse’s mouth. 
  • I am constantly earning little rewards or encouragement. It tells me when they see a healthy pattern such as, I have lower calories for the day when I eat eggs for breakfast. It also tells me how much weight I have lost as compared to household objects (I have lost a desk lamp or 5 pounds) and of course keeps track of my logging streak. 
  • My sister is using the same app and we can share our progress, recipes etc. 

Speaking of my sister, talk about something unexpected that has come from rehab! I am incredibly lucky and thankful to have my big sister join me both in eating better and adding exercise to her routine. It is awesome to go on this quest for wellness (I am sorry I really hate calling it a journey, a journey makes it sound like I am going on a nice trip. A quest, I think, leaves room for overcoming challenges and doing hard things.) together. We check-in, motivate and complain to each other. It has been nice to not feel like I am the only one going through this shift in the way I live my day to day.  It is not my place to talk about her business on the internet but it is pretty safe to say that most people could benefit from a shift to a healthier lifestyle. It is very motivating to know that we are in this together and that she wants to be healthy enough to hang out with me (and her kids I guess)  for a long time after I get a new heart. 

Another thing I didn’t expect but am greatly enjoying is a newfound sense of determination. I think sometimes when living a life that has a lot of limits, those limits start to encroach on parts of your life where you aren’t truly limited. I think there comes a point that you are so used to limits that you impose them in places that they don’t naturally exist. Feeling my edges so to speak has really given me confidence to push myself a bit harder in places that I hadn’t been. Instead of being a lump when I get home, I can spend 20 minutes cleaning the kitchen, or the evening doing laundry. My days don’t HAVE TO end at 3 p.m. I find myself waking up in the morning feeling energized and excited to get to rehab or my solo home workout. I think the best way to describe it is, it feels a little like I am sticking my tongue out and blowing a raspberry in the air, and saying “You can’t catch me!” to my own heart failure. I also think there isn’t a small part of me that is annoyed that I have thus far been unable to get the weight loss medication I have been prescribed due to shortages and misunderstandings. I feel a bit like Thanos saying “Fine, I’ll do it myself” to the system that is keeping me from receiving that particular weight loss jump start. 

Perhaps it is because of the new determination, paired with the feeling of safety that rehab offers that I feel that my efforts at the gym and in my diet have been successful. I am a person who regularly starts and stops this kind of quest. When the going gets tough, I get going…home. Go big or go home? Awesome, I’m headed home. I think I have reached the perfect blend of spite, safety, and determination to be successful. My workouts have quickly increased in length and effort over the last 3 weeks, I am going farther, longer, and faster each day. I feel stronger, physically and mentally. I am exhausted, but because of effort not because my heart is sluggish and my mood is poor. 

I am excited that I have 11 more weeks to keep getting stronger, and learning more about what I really can do. Hopefully in that time my muscles will figure out that this isn’t going to stop happening, and will calm down about how hard I am working them. In fact, the muscle aches are pretty much the only thing I can say that is negative about any of this. Does anyone have any hot tips about muscle recovery? My arms and legs are noodles for the whole night after a hard workout. Is that just what happens when you work out hard? Am I doing something wrong?  Do I just need a massage? Are my arms and legs secretly noodles and it is only apparent when I try to work out with them? Any help is appreciated. Thanks as always for cheering me on. You guys are awesome and it is really nice to hear from you all, and have your support. In addition to everything else, it is very impactful to know that I have such an awesome cheering section.

Rehab Day 1

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They tried to make me go to rehab and I said, “Hell yes! Finally.” Not exactly as catchy as Amy Winehouse but sometimes the truth isn’t catchy. Today, I completed intake for 36 sessions, 14 weeks, of cardiac rehab and I could not be more thrilled. Over the last few months I have tried working out on my own only to run up against the same issue, time and time again. I just get scared. I know to you heart-healthy people that is an odd issue to have, but there comes a point where I don’t know if I am pushing myself or pushing my luck. When that happens I find myself giving up, too scared to keep going. That is why when I saw my doctor last month I asked if I could do more cardiac rehab, and he approved. I knew I would be rolling the dice with insurance whether they would approve it for me or not, and was prepared to only have 6 sessions if they did. Getting 36? A full course? I am so excited. It feels like I finally won a battle after a long, long losing streak. 

There are so many benefits of cardiac rehab for me that go beyond just the customized workout. For one thing, the scheduled appointments assure I will actually attend. It is far too easy for my brain to talk me out of going to the gym, there is no accountability, and I can justify just about any reason to skip. Conversely, I don’t miss appointments, I am the person who is early to everything. The structure of these sessions will be great for my ADHD brain. They will also give me a safe place to feel for my edges, to learn better what my body feels like when I am entering the danger zone, and when I am just pushing. Learning this will hopefully help me when working out on my own, to have the confidence to continue. 

Things I love about cardiac rehab: 

  1. Old men exercising in jeans. I would say 90% of the people in cardiac rehab are men over the age of 60 (heart attacks likely), and of those men 90% wear jeans to work out. It cracks me up. 
  1. I am a unicorn to them. These nurses are used to working with the aforementioned old men in jeans with acquired heart disease and a tendency to push back about all the lifestyle changes they are being asked to make. Not me, this has been my life for 41 years. They aren’t asking anything of me that hasn’t been asked before. Plus, both this time and last the nurses remarked about enjoying learning about my heart, and seemed very amused by me in general. I love being amusing, and I am happy to provide a little break from the old dudes. 
  1. Sonic ice! I love it. Who doesn’t love Sonic ice, that they can access for free? 
  1. Constant feedback on my heart while working out. Blood pressures, BPM, pulse ox, they check it all, and tailor my work out to what my body tells them. 
  1. Help from an honest to goodness nutritionist on tailoring my diet to better serve me. I do a good job with this but guidance and feedback are so nice. 
  1. This is a medication free way of regaining some of my lost heart function and I am all for anything that doesn’t require another pill. 

I start my first real workout tomorrow and am so excited to begin. If you see me, please ask me how it is going, or shoot me a message. I need all the encouragement I can get, exercise has long been something I feared and gave up easily on. The more positive reinforcement I can get the better!  In fact, one of my questions on my intake paperwork today was about my support system. It wanted to know if I had anyone I could call if I needed support. I didn’t have to think about that question at all, and marked that I had MANY people who I could call if I needed. I truly believe that has always been my magic feather so to speak, and lets me keep flying. Thank you for that. 

Chasing the Carrot

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I kind of lost it today. It has been a long, arduous month and I guess I only had exactly 31 days of patience in me. The beginning of the year is always a fun time for me (really any of your chronically ill friends, check on us, we are not okay). What is super fun about it is that, when insurance deductibles start over nothing is automatic. If you aren’t paying close attention there is a good chance things you’ve had on auto-pilot for the last 11 months have just completely broken. No warnings are given, if you are not proactive, you will not find out until you don’t have the medication you need, and trying to fix it from that point is like a clueless politician trying to help after a hurricane, paper towels are nice but my house is a fish tank.  

I have about six medications that have co-pay coupons, all of which have to be individually reapplied to their respective medications taking the co-pays down from $300-$600 (on $1200-$8000 meds) to $10, if you are thinking to yourself, that’s not right, you are correct and perhaps you’d like to vote for people in favor of Universal Healthcare. Somehow, each year no one knows how to get at least one of these coupons applied, this year it was two. In addition to that, one medication needed a prior authorization, and another a physician approval for refill. All told I have probably been on the phone with my pharmacy for three, maybe four hours in the last two weeks conservatively. 

Yesterday, I spent an hour on the phone with my insurance. All for a medication that I only knew was in danger of not being delivered because I looked, not because I was warned by anyone, or any system. The pharmacy has already sent my med packets without it. I have been working on this for TWO WEEKS and I missed the cutoff to have it included in my shipment. Now I am in danger of not having it suddenly for the first time in 5 years (I run out officially in 6 days). The things it says can happen if you stop taking it suddenly, are not great. Which may explain the franticness of my calls. After back and forth with the pharmacy, with my doctor, and with my insurance (for over an hour remember) today I was told this medication not only was denied, but not eligible for appeal or exception. I spent an hour talking to an insurance representative yesterday! She went through my policy with a fine tooth comb, and she told me, all I needed was the pre-authorization from my doctor. My doctor sends it, and within an hour it is denied. You can’t tell me that the representative didn’t know that this medication was going to be denied based on the new formulary my insurance has. I don’t blame her for my formulary, I don’t blame her for the fact this isn’t covered, that is above her pay grade. I am mad that there is no way she did not see after looking through all the things that we looked through yesterday the REASON this medication was suddenly being denied even though I had a current pre authorization on file and instead of telling me that it was denied, she said to ask for a new pre-authorization.   

This medication has been keeping my head from exploding off my body for the last 5 years, but I guess now I get to either have completely debilitating migraines again (as opposed to the only mostly debilitating ones I have now) or try a different form of the medication that my doctor already was pretty sure would not work for what I needed it to do. I am SO limited on the kinds of medications I can take, and this is just devastating. I hate that people who aren’t doctors can decide what I am allowed to have. I can’t even get it without the insurance because it is too expensive. I have a $10 co-pay card but those only work if the medication goes through insurance first. If I wanted to pay for this medication out of pocket it would be somewhere in the neighborhood of $8000 a month. Yes really. Again, the system is super broken and perhaps we could vote in ways that make this less easy for the medical complex to do? 

That is just one medication. I still have one medication that had its coupon applied and disaster averted in time for my monthly shipment. Yay! But, I know not to get too excited because the likelihood that it will apply automatically next month without me calling and having it applied manually is about 1000 to 1. The final medication has been refilled by my doctor but the pharmacy seems to think that it was canceled by him. I. GIVE. UP.  I am going to give them a week to figure this out, I am not in danger of not having it until my March shipment. I am hoping that somehow this problem works itself out but I foresee another half hour on the phone getting it fixed. It would be easy to blame the pharmacy, but this has been an issue at almost every pharmacy I have used. 

In addition to all of this, I have been prescribed Wegovy to help me lose weight in preparation for transplant. Do you think the pharmacy can get its hands on any? Do you think my insurance will cover any other type for any reason other than being diabetic? Sure won’t. Am I a literal tenth of a point from being diabetic and kind of hoping my pancreas craps out so I have a chance at getting this medication so I can get a heart? Disgustingly, yes. That is what it has come to, it would be beneficial to me to be diabetic. Insurance does not want to help us prevent things, it wants to help us march ever closer to the grave and play chicken with our plot. 

In the midst of all of this I am feeling pretty gross. Truly not well, mentally, nor physically. I am not super certain why but I have a feeling heart failure is a big part of it. On top of that it feels like I am doing everything I can to put off transplant, get the medication and services I need, literally fight people for what I need to live and every time I get close, the carrot is moved just a little further away. Guys, I am starting to think you can’t get the carrot. It’s really hard to stay motivated to “get better” when it is already so hard. Don’t admit that though, you don’t want anyone to think you don’t WANT a transplant or don’t WANT to get better. Don’t let anyone think you might not be compliant. I want it more than anything, I spend all my time TRYING to comply, but the bureaucracy is crushing, the roadblocks are everywhere, and I just want the damn carrot already. 

Still stable, still strong. Not yet.

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If there is anything I have learned through this whole process it is that I shouldn’t bury the lede, so here it is, after being presented for a second time, my case for heart transplant remains on hold and I have not been listed. I am happy with this decision. I find I am only unhappy in the absence of a decision,  floating out in purgatory not knowing what comes next. This is actually good news in its way, this means that I am stable and strong, and I can keep going without a transplant. Once again my weight plays a large factor in this decision, and I am again not angry about that, though I am a bit annoyed I didn’t have a shot at my new medication for a while before my case was presented. 

About a month ago I was put into a program sponsored by the hospital and the heart failure clinic to get Wegovy at no cost to me because my insurance will not pay for any of the weight loss medications. There are good indications that this medication can help significantly with chronic heart failure but as of yet this would be an “off label” use for the drug, thus the program through the heart failure clinic that is very interested in its potential to help its patients, prolong lives of those waiting for transplants, and possibly eliminated the need all together. (Let’s not dream too big just yet.) All of this is great, however if you have read anything about these medications, especially this one, they are in short supply and I HAVE to get this medication, and it HAS to be through their pharmacy. They have not had any of the lower doses since September. I have been chilling at number 87 on a waiting list for when they get the medication in, however along with today’s news they also were able to bump me up to first priority on the list. 

Hopefully, I will be able to start this new medication soon and it can help jumpstart the weight loss I have been unable to achieve on my own with my limited capacity to exercise. Best case scenario is I lose weight and feel so much better that I can go back to work full time, and I feel better than I do now, well enough to perhaps push the transplant talk back another year, 18 months or two. I am hopeful but not naive, I will control the things I can, my diet and exercise and try to let go of what I can’t, when/if I get the Wegovy. 

It has always been hard to explain this place I am in. My heart functions at about half the capabilities of a sedentary adult, and about a third the capability of a fit adult. On paper it is REALLY bad. In my day to day it isn’t great but it has been such a slow decline over the last 41 years that it isn’t shocking, super scary and sometimes it isn’t even THAT different that what I have known my whole life. It isn’t like I woke up one day and was suddenly unable to go up and down the stairs without feeling faint, that has almost always been the case, it is just more frequent and with fewer stairs now. When people suggest things to do, I used to be able to decide I wanted to do it and power through even though it would mean I would be tired and weak the few days after, now I just have to say no because they are not feasible for me to push through. Most days, I am very tired but I am okay. I live a low key life and sometimes do things I know will cost me, just to prove to myself I still can.

Today in therapy, I was telling my therapist that I think my current point of growth is going to have to be accepting where I am, but like, actually doing it. I know I am at a limited capacity, but I don’t like being the one who has to change a plan or cancel, etc. I have never liked calling myself disabled but more and more that is how my doctors refer to my condition and how I experience life. It is time to start taking the help that is available to me and perhaps ease some of the challenges I face day to day. Apparently I don’t have to just be stubborn and figure out how to do everything myself? Seems fake but I guess I’ll try it. It may be time I start renting mobility aids when the situation calls for it (Omaha Zoo I’m looking at you)  so I can enjoy myself AND still function the next day. Perhaps, I let go of my compulsive need to do my own grocery shopping and let it be delivered 2020 style again. Maybe, just maybe I don’t say “I’m good.” every time a friend asks if I need help with anything, when in reality I just thought of five things I am trying to figure out how to do on my own but know I will struggle with. Anyway, this is all a long winded way of saying I am stable and I am strong, and I will keep doing my part to stay that way, and if that changes, the plan will change too, and I promise, I will tell you.

The Week My Case Was (Supposed To Be) Presented a Second Time

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One week before I got the call that my case for heart transplant would be presented for the second time, I said goodbye to my beloved cat. The end came quickly for us. He was old, it is true, but he was also a complete mad man. That was until he woke up from a nap one afternoon and it seemed like he couldn’t use his back legs. Things only got worse from there. It seemed my sweet boy had a stroke.  I will spare you the details of the decline of my fabulous feline. He deserves to be remembered as the majestic beast he was, but it was easily the most heartbreaking week of my life. I understand now what they mean when they say “soul” pets. Gus was certainly mine. I have loved all of my pets, but there was just more with Gus. He was my friend and confidant. He was my nurse and companion through the biggest changes I have ever gone through mentally and physically. I have never met a cat with so much personality, and while we didn’t speak the same language, he always seemed to know when I needed a cuddle or laugh. I can’t see the future, but knowing what I know now, I think maybe he could at least feel it. You see, one of the biggest things I worried about with the possibility of transplant looming was my buddy Gussy. Gus was extremely bonded to me, and exclusively me. He tolerated other adults who would feed him but he was truly only nice to me. I worried about the amount of time that I would be away from him for transplant and recovery and more than that I worried about how to manage after transplant when it is recommended to not be near cats. I believe he took that worry away from me, and knew this next part of my journey I had to go alone. I will miss my Gussy, my Wussy, my baby, my wayby, Fatness Neverlean, Bubs, Bubbers, Chubs McGee, Auggie, Chonk-a-donk, Triple G, and all the other nonsense names I called him daily. 

The Monday before my heart transplant was presented for the second time I woke up with a blue tongue. If you do a cursory Google search for “blue tongue waking”, you will find that the internet believes that you may be suffering from a congenital heart defect (check), heart failure (check), asthma (check), perhaps acid reflux (also check), or the ingestion of a blue food dye. I could not remember eating anything blue, as I do my best to follow the rules and the third rule of CHD club is no blue food. (The first rule is don’t die, the second rule is no faking heart issues for any reason, even if you hate your PE class). Anyway, I didn’t eat any blue food, so mild panic set in. I took a photo and sent it to the team, not my medical team mind you, my home team, my family, it was 7 a.m. someone had to be awake. My sister must have done the same quick Google I did and concluded I had a congenital heart defect. Shocking. What is a girl to do but check her O2 (it was fine), and then try brushing her teeth. Sure enough, the blue started to come off. I swear I didn’t eat anything blue…but I did have Christmas Nerds, red and green Christmas Nerds, the night before and while they aren’t blue and thus not technically against the rules, it’s the only thing that I can think of that would have caused it. All this, before 8 a.m. on the Monday before my case was presented for a second time. 

On the Tuesday before my heart transplant case was presented for the second time, I said “see you later” to the therapist I have been working with for seven years. Like Birdie said in Hope Floats, “Beginnings are scary, endings are usually sad, but it’s the middle that counts the most. Try to remember that when you find yourself at a new beginning. Just give hope a chance to float up.”  Endings are sad, but notice she didn’t say “bad”. Nothing bad here. For the last seven years I have had the best therapist I likely will ever experience. She was who I needed, when I needed her. I showed up in her office broken and without a toolbox. I am leaving knowing who I am, how I roll, and with a toolbox brimming with ways to not only help myself but effectively help others without sacrificing myself (they’re called boundaries have you heard of them?).  I have grown so much as a person it is time for me to test the wings she helped me build. I hear what you’re thinking…now? Yes. Simple as that. It is time. Sometimes you find yourself at a fork in the road in the middle of a journey and you get to choose a new way forward. Our paths don’t go in the same direction anymore, but how cool is it to be able to look back and see just how far that path has taken you. You know me, you know I am like an adorable fungus you cannot get rid of, a see you later is not a good-bye. You’ve seen the photos of me with my childhood cardiologist, even professionals keep me around, just like you they want to see what comes next. I just as much cannot wait to see what is next for her, she has so many new things happening in her life and practice, she changed my life and I can’t wait to see how she changes others. 

Early in the morning, on the Wednesday before my heart transplant case was presented for the second time, I took a small box containing a tiger tipped vial to my local hospital lab. A sweet woman named Loli drew my blood so it could be sent to Nebraska for antibody testing. This is an important part of the heart transplant process, and a vital piece of matching me with a heart in the future. Loli was so sweet and must have been able to tell that I was nervous about this precious vial arriving in time for Friday. She kept telling me how she did this all the time and how they would process the blood and get it on it’s way. She asked if I had a transplant, and I explained I was hopefully getting one. “Kidney?” she asked. I get that a lot, I think it must be more common for a person my age to need a kidney than a heart. I told her it was a heart and that this was my second try. She told me that she knew she probably shouldn’t say this, but it is Christmas time and miracles happen at Christmas. She will pray for me to be listed. I thanked her, and she told me again that she would make sure that this got sent out quickly. Through this whole process I keep having encounters like this one, my family too. I don’t know what I believe about what happens when we die, but I will tell you this, I am shown almost every day that there are people looking out for me on the other side. 

Later that same morning (the day I am writing this), I got a message from my clinic letting me know that my case won’t be presented this week. Unfortunately, they wouldn’t have my antibody testing back in time to discuss my case. I was crushed. I can handle waiting for a heart, and the unknown of when it will happen. I can handle them saying it isn’t time again, they will know when it is time. What is killing me is being told I am going to be put up for consideration again, and being delayed time and again. They knew they would need this test. They knew how long it takes to get results. They knew where I lived. I was just there doing other tests for this presentation, and they didn’t do it then. They didn’t use overnight mail, they didn’t ask me to come back to do the test there. They just told me they were presenting me, and they were sending a kit to collect this blood. I called on Monday to express concern I didn’t have the kit yet and I was told that it would not be a problem, I could be presented without it and to let them know if I didn’t have it by Wednesday. I received it Tuesday night and went immediately to have it drawn in the morning. I triple checked that it would be sent that morning. To have done what they asked and then be told it wasn’t enough within hours of each other was soul crushing. It is my goal to do everything I am asked by my team. If they had told me I needed to come there for them to draw one vial of blood, I would have. We are talking about the literal rest of my life, we aren’t talking about an annual physical, or an ingrown toenail, we are talking about heart transplant, this is something you drop everything for. I understand WHY they need this test first, but I can understand and still be disappointed in the way things went. Trust can be shaken but not broken, so right now, my trust is a little shaken, but not broken. 

Now I don’t know when I will actually be presented. Next week being so close to Christmas seems unlikely, the next being the week of Christmas seems less likely. I have felt hopeful the last week, that this would be the time, and I would be listed. Things seemed to be working out. I hope they still will. Right now, I am just sad and angry. I am tired of being tired, and I am tired of waiting to know what comes next. 

You should know I am okay. I really am. I am nothing if not resilient, and my mom has come to be with me while I go through all the emotions. She was coming to be with me when I found out if I was listed and she came early when I was crushed to find out everything would be delayed. I am lucky that either way, when I need my people, they show up. This will get sorted out, and sometimes even the best people in the medical complex forget that there are real people and big emotions behind the test results. 

I share all this because this process is not linear, and because of what is on the line it is incredibly emotional. I share this because you are someone close to me and I want you to know what is on my mind when I seem like I am a little less cheery than usual. It is important to share this because, you might be going through something like this, you might know someone (me) who is or will be, it is important to know that it isn’t a plot against you or me when things don’t flow neatly from point A to B. If you are one of my people thank you for your support and love through this, I continue to be amazed and humbled by the amount of kindness and love I have been shown. If you are on your own journey, I wish you health and ease as you put one foot in front of the other. 

The Beginning

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People often tell me that I need to write a book. Maybe one day when all of this is “over” I can think about that. Right now I have enough seemingly insurmountable tasks ahead of me, I don’t need to add any more, plus, where would I even start? 

I may never write a book, but soon, in a city a few hundred miles away there will sit a group of people I barely know deciding what happens next in my story. I truly believe whatever they decide will be the right thing for me, because since the very start that has been the truth. Somehow even against all the odds, from the very beginning things have just always kind of worked out. My bread has always managed to land jelly side up and leaning heavily on the five-second rule, I have always been able to dust off and move on. 

I guess that if I were to write a book, the beginning is where I would start. I think it is hard for anyone to know with the memories of times before they can personally remember anything, what is true, and what is family lore. Like most things, I would guess the truth is somewhere in the middle of the facts and the fiction. The story I am about to tell is the truth as I know it. I will do my best to tell it free from as much hyperbole as I can manage though you may find parts of it hard to believe, I know there are times I still do. 

June 23, 1982, was a truly beautiful day in Dodge City, Kansas. I didn’t arrive until late morning and even then didn’t make it outside, but thanks to my friend the internet I can see the high temperatures that day barely broke 80. What a lovely reprieve from the scorching late June heat in western Kansas. My mom couldn’t have planned it better, and for the record, my arrival was planned. I didn’t know that until today. I knew I arrived via c-section like my sisters but I didn’t know if the day was planned or would be whenever I started knocking. I have always liked my birthday, the date in particular, not just the fact I get presents. June 23, 1982, 6/23/82, do you have any idea how many times I have had to confirm my date of birth? So many interactions in a hospital require a person, to confirm their date of birth, 6/23/82 rolls off the tongue, and if you’re OCD like me you like that two multiplied by three is six, and eight minus two is six. Brains are weird. What was I talking about? Oh yeah, I was born, well extracted by appointment, the morning of June 23, 1982, at St. Catherine Hospital in Dodge City, Kansas. 

It was obvious pretty quickly that unless Papa Smurf was real and my biological father, there was something not quite right happening with me and my cerulean skin. I don’t fault anyone for the things that transpired over the next 24 hours. It was 1982, we were in a tiny hospital with fewer than 100 beds in southwestern Kansas, and only about 1,100 babies are born with my specific heart disease each year. In such a rural area it is unlikely that they’d ever seen a baby with TGA before. Even if they had, it had only been in the last 10-15 years that doctors had been routinely able to operate on these tiny hearts and increase their life expectancy. So no, I don’t blame anyone for the events that took place over the next 24 hours, because I don’t think my life would be different if things that day had moved any faster, though I do know things could have been devastating if they’d moved slower. 

Obviously, the cobalt cast of my skin was concerning to the doctors. They may not have known the why, but what was pretty obvious, this baby was not getting enough oxygen. My mom was told that some time in an oxygen-rich isolette with some warming lamps should do the trick. It did not, dear reader, do the trick. I’ve spoken to my mom recently about how things went that first day, and it is hard for her to remember all the details. As it stands I was an infant, she was on drugs (prescribed, from a 1980s c-section), and my sisters were only eight and five years old, we don’t have the world’s most reliable witnesses. It went something like this. My mom would come into the nursery to see me, I was quiet, and still, I didn’t open my eyes, and was not “pinking up” as had been promised with the introduction of oxygen. This went on until the next morning, that was when Dr. J made his rounds. He was right out of med school, I happen to know he had only started practicing in 1981, he was much less senior than the doctor who had suggested I needed oxygen and warming lamps. He took one listen to me and knew that there was no amount of heat lamps and oxygen that was going to fix what needed fixing. 

The right thing and the popular thing aren’t always the same as they say, and Dr. J’s suggestion that I needed to be life-flighted to Wichita immediately in order to survive was not a popular call. The more senior doctor had already made the call about my condition, I was just not responding as well as they had hoped. I worry dear reader, that given his way, that doctor would have “wait and see-ed” me right out of this earthly plane. Perhaps that is why I have never enjoyed a wait-and-see approach. Dr. J fought for what he knew was right, he explained it to my mom and my grandparents, and it was decided. My mother had done the first “next right thing” of my life.  I would be flown to Wichita as soon as the life-flight could be arranged. I would “meet” my sisters through a glass window quickly before being shuttled off, and my mother would sign herself out of the hospital AMA so my grandparents could drive her the 3 hours to Wichita to be with me. 

I wrote Dr. J ten years ago, to thank him for what he did for me. What follows is a little excerpt from that letter and his response. It will explain a bit of what happened next. 

“Dear Rev. J, 

My name is Monica Wells, I am 31 years old and your intervention is why I am able to write you today. You don’t know me, in fact, we only met very briefly when I was only a few hours old, but I owe you a debt of gratitude.

On June 23rd, 1982, I was born in Dodge City, Kansas. A blue baby, my mother’s doctor assured her that after a while under a warming lamp and some oxygen, I’d pink right up. It is my understanding that you are the one who examined me and determined this not to be the case. You were the one who made the suggestion/decision that I should be flown by jet to Wichita immediately if I was to survive. You were right. I was diagnosed with transposition of the great arteries upon my arrival in Wichita. My heart stopped for the first time less than 24 hours later and I was having the first of several open heart surgeries within 72 hours of my birth. I don’t know how much if any of this information ever made its way back to Dodge City and to you, but you saved my life. 

I hope I have found the right person, and I wonder if you even remember this. I would understand if you have no recollection as  31 years have passed, but my mother remembers it like it was yesterday and the story has always been that you were the one that saved her baby, the one who saved me first.”

His reply. 

“Hi, Monica.

Oh, my!  What a blessing your email is for me!  I do remember you, but I never heard anything more after you were airlifted out. I have wondered of you often, your bright red hair and will to live were impossible to forget. 

…

Thank you for this gift to me.  Most of what we do is like planting a seed…it takes years before that seed bears fruit.  And, rarely do we see or hear of that fruit.  Hearing from you is a privileged glimpse into the fruit of our meeting so many years ago.

All blessings to you and yours, Monica.

Fr. J”

Dr. J now Fr. J left medicine and joined the seminary 10 years after we first met in 1992 and has been a reverend ever since. He and his wife both minister at a church in Texas. He put his brand new career on the line to second-guess those above him, and it saved my life. None of us know or remember the name of the doctor who made the wrong call, we only remember the name of the doctor who made the right call. It has never been about holding a grudge but always about holding gratitude. 

Within 72 hours of arriving in Wichita I had my first corrective surgery, this one to allow me to oxygenate the way my body had cleverly been oxygenating already, by holding open the hole between the two upper chambers of my heart. You see, I even managed to get lucky in that way, by having the right combination of heart defects to temporarily allow me to survive while everyone else figured out a plan. Jelly side up. 

It is hard to have faith in the medical complex. The system is convoluted and seems to be set up to fail. For me, I  just have to trust my gut and do the “next right thing”. Try the new med, or maybe refuse it. Stay with the same team, or be brave enough to say goodbye. Since that first big “next right thing” I have trusted my mother’s gut and learned to trust my own. Presenting my case again is “the next right thing” and if this team, whom I picked because they were also “the next right thing” says it still isn’t time, then I wait, because there is one thing I know for sure, you cannot make “the next right thing” happen. The next right thing just is, and so it will be.

Bad Ass Zone

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I once thought,  if not for my heart disease I would want to be the kind of person who might try to climb Mount Everest. Recently, I have been thinking that I kind of have been climbing my very own Mount Everest for the last 41 years. It seems like I climb for a while, spend a good stretch at a base camp, climb some more, get to another base camp, chill out, wait, and repeat. No one climbs just to hang out at different base camps though, and eventually, you are going to have to push for the summit or decide to go back down. I just realized that if I am going to continue to use this metaphor I would have to refer to this next part of my “climb” as entering “The Death Zone” and that seems a little too dark even for me, so let’s all pretend that the world calls the tippy top of Everest “The Badass Zone”. In fact, perhaps we should encourage all climbers and the Nepali people to start calling it “The Badass Zone”, no need to keep with these self-fulfilling prophecies, in fact perhaps every body still on Everest is a victim of the Pygmalion effect. What was I saying? Oh right. My own Everest, entering the newly named, hopefully to be adopted “Badass Zone” because regardless of how often I roll my eyes at her, I am listening to my therapist and I know our thoughts are important and even if I did think it was funny, we should not call it “The Death Zone”. I digress. 

I hear you, “Monica, what are you prattling on about, would you please get to a point, or even start your update!” I suppose, but I want you to know, you are a buzzkill. 

Yesterday, I had yet another appointment in Omaha for testing with my heart failure (trying it’s best)/transplant team. I underwent a heart cath which at this point is almost, dare I say, run of the mill for me. The worst thing about it is being NPO (Nothing by mouth, I guess in latin it is nil per os, you learn something every day. It means no eating for me.)  for 12-15 hours beforehand. It is minimally invasive, a poke in the neck and then a “lookie loo” with probes in a vein into my heart. I stay awake and communicate with my doctor the whole time. Here is the part where I remind you I love my doctors. I especially love my cath doctor, he is just a fun guy and I bet he would be fun to take to bar trivia. Since I am awake he makes sure I am “included” as much as I can be in the procedure and he isn’t just talking about me right in front of my draped face. I’m rambling again aren’t I? Anyway, I had my “lookie-loo” and honestly things looked a lot the same as they had before. Unfortunately, they didn’t look great before and I am more symptomatic than I have been. 

I shouldn’t have been surprised to see my heart failure (trying it’s best)/transplant doctor, Dr.B after my cath, but there I was, surprised when he popped in unexpectedly to talk to us about what he thought this all means. Have I mentioned how much I love my team? We were not meant to see him, and this conversation could have happened in a MyChart message or through a nurse. When my mom started smiling and saying “Hello!” to someone in the hallway like she knew them I was really confused because we don’t know people in Omaha. We do know Dr. B though and he came in to tell us what he believed to be true. Yes, I am stalling. Basically, things do look the same, however other tests don’t. My cath results don’t agree with my stress test results for example. What he figures is, that while I am chilled out, listening to music, gabbing with Dr. D in the cath lab, my heart pressures are my baseline (I can’t call them normal, these numbers aren’t normal). If I were to do an exercise cath however, (Yes, that is a real thing, and they make you pedal while you’re on the table with a probe in your neck! That is a circus act I would like to see but not perform.) he believes my pressures would shoot up to 3-4 times what they are at baseline, which would make me feel terrible with exertion (accurate) and the other symptoms I am experiencing. He could ask me to perform this circus trick but he doesn’t think he needs to and have I mentioned how much I like him? It is because of this, and the other testing that I have had recently, and in the near future that he is going to present me again in the next couple of weeks for consideration for transplant. He believes it is time to “push me forward” and I have to trust that he knows better than I do when that time will come. I stalled just writing this paragraph. Can you imagine how long I would drag my feet on doing this thing?  

When he left the room, I looked at my mom, a little stunned as I always seem to be when movement on transplant comes back up. It is kind of like a jack-in-the box, I know it is coming but it is a surprise every time. 

“Huh.” I said. “I guess, I really am going to get a new heart.”

She looked at me a little dumbfounded and asked “What did you think we were coming here for?” 

“I’ve been coming for the turkey sandwiches.” I told her. Holding up half of my doughy, white bread turkey and swiss sandwich. I, of course, was joking but those sandwiches are somehow the best food on the planet after being NPO. They stick to the roof of your mouth, and are a choking hazard but they hit the spot. 

So, that is where I am for now. On the precipice of being recommended to be listed once again, and at the mercy and wisdom of the transplant board, and likely entering the “Bad Ass Zone” of my personal Everest. Whatever they decide will be the right thing. I have full faith in that. Meanwhile, I have a bunch of appointments this month for more tests. Have to keep those bad boys up to date you know. Oh, and…this is fun, in the middle of all of this I have just a touch of skin cancer (nothing serious) that I have to get removed with margins. I dunno all the cancer lingo, I am a heart patient dammit, but I am assured it is nothing to be overly concerned with and I will be getting a good chunk of skin removed and a few stitches in the next couple of weeks and I will be right as rain. It honestly made me laugh when they told me. Of course the weird little spot under my arm was skin cancer, what else would it be! As always, the adventure continues and I will keep you updated as it comes.

One More Time With Feeling

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The thing about roller coasters is, after a steep drop and a straight away, they like to throw in a loop. The drop? My first appointment with the heart failure and transplant team, almost exactly one year ago to the day. The straight away? The holding pattern I have been in since then, where I test and I check-in and re-test and re-check. And now the loop, I am not going to say my last appointment was terrible, but I can’t say that it was the best I have ever had. I know the reality of congenital heart disease and congestive heart failure is more than likely a gradual decline over one’s lifetime. I have never expected to walk into the doctor’s office for them to check the tests and exclaim “You’re cured!”, my brain hasn’t even dared to dream that scenario so I am pretty sure I am on good terms with reality there. However, it is never easy to hear that you seem to be in a bit of decline, and it is even harder when both you and your team know there is very little to be done that we aren’t already. 

As I discussed in my last post, I was going into this appointment ready for reckoning, knowing that I have not been able to keep up with exercise since I have been back at work. I have gained back some weight I lost and am generally not where I had hoped to be at this appointment. I was ready to face the music. The music came I suppose but it wasn’t the tune I was expecting. My doctor is a lovely human who is always as gentle as he is frank. He was not at all shocked that I found it next to impossible to carry on the exercise regime I had been, and work full-time. He reminded me that based on my testing, I am “exercise intolerant” and “disabled from a cardiac standpoint”, he also reminded me that he had played all of his cards already. There are no more medications, I am on them all, and the highest doses. There isn’t another device (well there are a couple but no thank you, trust me) that is better than what I have. There really isn’t any more that the team can do short of transplant and he and I agree that we still want to keep that as far in the future as we can push it. 

Where does that leave me? Well, here comes the loop, the thing I was not at all prepared for – it is time for me to scale back my work load. It was a punch in the gut, almost more than the thought of transplant was. I know I complain about my job, it is true, teenagers are a pain in the behind, but they are also just complete dorks who make me laugh and can be super sweet and innocent, and so funny. I love what I do, I love working with kids who need a little extra love, a little extra help, and watching them learn and grow. Yes, sometimes they challenge me on the dumbest things, and pick weird hills to die on (as a matter of fact they will complain for longer than it takes to actually do the assignment), but dang it if I don’t enjoy the stubborn cusses. 

My doctor went on to explain that while he cannot add more hours for rest, and exercise into my day, he would like to suggest reallocating the hours I do have to best serve where I am currently. He knows I try my hardest with diet and exercise but I am limited. He knows that when I have the time to do what I am “supposed to” I do it religiously. So the proposition was, can I reduce my workday enough to have time to work, exercise and recover all in 24 hours without burning myself down to the wick. If I work five hours a day, instead of seven, can I do cardiac rehab, rest and recharge and repeat? You might be thinking, shouldn’t you use that extra time to JUST rest? Actually, no. For reasons I won’t go into because they kind of feel icky and weird, the size of my body at the time of transplant really matters. It isn’t in a fat shame-y way, it is in the best outcome kind of way. My fitness, and body size have a direct impact on how transplant and recovery will go, so it is also my job. I need to give it the same kind of time I would give a job, it could literally be a matter of life and death. Plus, there is the added benefit that there is still a chance that maybe, just maybe losing some of this pesky weight will make me feel better enough that I can put off transplant for a while longer, maybe even feel well enough to go back full time even before transplant happens. 

I have gone through the full spectrum of emotions this week about this. I did not want this to be the answer. I did not want to take more help than I already have been, from my family, from my friends, from my co-workers. I did not want to admit that the chronic “not feeling good” is actually the advancing of my disease. I have been angry that the systems in place to protect people in times like these are so fully protected by red tape, and that there are so many catch 22’s when it comes to what is best for a person’s care. Catch 22’s about insurance, where to get it, who can get it, who decides what, and why it never seems to be the doctors or patients. I have had a few break downs, deep profound sadness, feeling of loss, and mourning. I know I will be okay and that this is the right choice but it isn’t one I was planning to make and I have never been keen on my circumstances making choices for me. 

All that said, I leaned in. I marched my happy butt into the powers that be and I told them my situation. I asked for their help and they gave it, they will continue to give it. There are still some things to iron out and I found out along the way that I have some more big feelings to work on, but for right now I know that things will be okay. Monday I start my new reduced schedule, and get myself back into my self-led cardiac rehab. Coming out of the loop, I have some curves and hills to get through in the next few weeks. I will do a heart cath in the next couple of weeks, along with repeating some of the heart transplant testing to keep it current. After that I am hoping for another straight away.

Where The Heck Is My Wagon?

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In order to fall off of a wagon, you have to be on it for at least a little while. I call that a win. From June to the end of July I did great. I watched my diet, I worked out, I did all the things, and then…the real world came back, summer ended and school started. Sometimes I feel like a juggler, and I can only handle so many balls in the air at once before I start dropping them. 

Each day, if I did everything I was supposed to do, and did it perfectly, I would:

  • Wake up at 5:30 a.m. in order to work out
  • Shower
  • Exercise 45 minutes 5 days a week 
  • Get ready for work
  • Work 7 hours 
  • Consume  less than 1800 mg of salt 
  • Consume less  than 64 oz of fluid 
  • Consume less than 1500 calories 
  • No dairy (lactose) 
  • Consume foods high in  protein and iron 
  • Have a healthy breakfast (less than 300 calories, and 200 mg of sodium)
  • Protein shake lunch (200 calories) 
  • Cook dinner (less than 1000 calories, and 1200mg salt)
  • Tidy my house 
  • Sleep by 9 pm

The problem is, many days I hit my first wall the moment I wake up. I always say if a healthy person woke up one morning and felt the way I do on a “good” morning they would likely consider calling in to work, much less on a bad day. The mental gymnastics, I have to perform in order to get myself out of bed some days could rival Simone Biles for the gold. Before you ask, yes, showering is on the list. I would like you to think about how aerobic showering actually is, if you are truly cleaning yourself and not just having an existential crisis under running water (been there, do that sometimes). It is a lot of up, and down, reach and lunge, all while maintaining balance and under hot water, ask your other chronically ill or mentally ill friends how hard showering is, and they will back me up.  

The rest of this stuff isn’t so much hard as it is time-consuming and mentally draining. I get tired of thinking about every single thing I consume and how it figures into my restrictions. The amount of time it takes to plan meals, make grocery lists, shop, read labels, and prepare meals (most often from scratch) is a lot when you’re already tired from just existing. 

Anyway, the point is I was actually doing okay when 7 hours of work wasn’t in the mix. I could reliably get 20-45 minutes of exercise each day depending on the day. I had the time to leisurely plan my meals, and cook them, I was able to sleep as much as I needed at night and during the day. I was making progress, and then…summer ended. 

I knew when summer ended that it would be a bad idea for everyone involved to try and do it all right from the start. Trying to do it all and failing would be a hit I couldn’t withstand and perhaps physically would have a hard time recovering from.  I just needed to get through my work days at first, and then hopefully I would be able to add in the exercise. I planned menus in advance, I froze meals, I prepared and within three weeks I was exhausted. I haven’t been sure how I am even going to just do what I am doing much less add more, especially exercise, I get home from work and am exhausted. My legs are swollen, even with my compression socks, and all I really want is to lie down and read.  

It is like I had been juggling tennis balls and suddenly a bowling ball was added to the mix. Needless to say, I started dropping balls, the first ball I dropped was working out. It had to go, it morphed into a hard to juggle football and I just could not do it, and keep the bowling ball going. The problem with that is, that I have a problem with all-or-nothing thinking. It is well documented and something I have spent countless hours working on in therapy but patterns are going to pattern when times get hard and ta-da! I can’t do it perfectly anymore? I already dropped one ball? To heck with the rest of these balls, this is too hard. I am just going to toss this bowling ball around and I’ll pick up another ball here and there. 

That folks, is how I ended up here, looking for my wagon. I know I need to get back on the thing. I have to do what is in my power to do, and I have to will myself through the things that are hard. Man is it easy to get mad, complain, and compare. It isn’t fair that I have to spend double on groceries so they don’t make me sick. It isn’t fair that for me following these specific rules is a matter of overall health daily for me. It isn’t fair when the people close to me, really want me to do these things, yet do not do them themselves because they know it sucks! I think that is one of the hardest things, is it feels very othering to be the only one doing these things. Encouragement is great, but I don’t need a cheerleader, I feel like I need a teammate. There comes a point with cheerleading that it starts to feel patronizing to me, a very do as I say, not as I do kind of situation and I just shut down, (also a thing I am working on in therapy). 

In one month I head back to Nebraska to meet with the heart failure team. I will fess up to my shortfalls, and likely schedule a heart catheterization. I was told that if it felt like I couldn’t both work and work out, a heart cath would be likely, I will tell you, I don’t feel like I can do both. It could be a sign my heart failure is advancing, it could just be a sign that this is going to be a challenge where I am. Either way, I need to do better with my eating and take the extra steps where I can. Sometimes I feel like I am always recommitting myself to this journey, but it is a hard path and there are lots of paths nearby that look more enticing, have fewer obstacles, and are more enticing. This is my path though…steady-on. 

Only Monday

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I woke up at 3:45 this morning and couldn’t go back to sleep. I haven’t been sleeping well the last few days. I also haven’t been feeling my best, it is almost like you don’t get this far in the heart transplant process because you are a healthy person with no reason to feel crummy. In addition to the crumminess I just have been kind of sad. In the period of two weeks, people I have known since they were kids passed away in one way or another from complications of their heart defect. That just never gets easier, especially when they are younger than me. The universe doesn’t do a whole lot of trade in fairness I have learned, but it doesn’t mean I don’t always hold out a little hope that one day that will change. 

So here it was almost 4am and I couldn’t go back to sleep. What is a girl to do besides grab her phone and lull herself back to sleep or at least sweet dissociation by the gentle glow of her smartphone and the promise of an infinite scroll? I round the usual bases, Instagram, and Facebook, and on my way to Tik Tok, I make the mistake of checking my email, it is hard for me to resist the siren song of the red circle indicating new messages. They have to be dealt with (see also; deleted) as soon as possible, the red circle is my mortal enemy and it must be vanquished. This dear reader was a mistake, for the email that awaited me at just after 4am was from my medication subscription service, and they were letting me know about the medications that would not be included in my next order without action. If I wasn’t awake before, I was now.

The first of the year is a real pain in the ass for the chronically ill, especially the chronically ill who take a large number of meds, and even more so if those meds are thousands of dollars without copay cards that have to be obtained, and resubmitted each year. I take 5 medications that cost over a thousand dollars without copay “coupons” that knock the price back to $10 which is great but the series of hoops to get these cards, and register them with the correct places is a pain in the butt. I have been dealing with prescription issues since December, and I would guess I will be until April. 

I immediately begin to dread the phone call I will have to make in the morning but I also know I will have to make it. I absolutely cannot go without my meds, not for one day, let alone a month. I calm myself down (I just get so tired of the hoops) turn on the sounds of gentle rain, and get another hour and a half of sleep before I have to really be awake. 

The moment I have a free second at work I take the chance to make a call to the pharmacy. I plead my case to the woman on the other end of the line. I have a very strict “be nice to the person who answers the phone it isn’t their fault everything is jacked up” policy. Her name was Nona and she was lovely. It took about 10 full minutes of checking this and that and we got things sorted (I think, I will check again in a week to be sure). She also let me know that my request to add the four medications that have been prescribed in the last year but are not in my pill packs could not be added. I would have to contact each provider and ask them to send in a new prescription. Again, it isn’t the person who answers fault. I thanked her and went back to class. 

Thankfully today we watched an episode of Cosmos in science and I had time to message four different doctor’s offices to make my requests. I even heard back from three! Not bad. All of this and it wasn’t even noon yet. 

While sending messages in MyChart I noticed that the appointments for my transplant evaluation were being put in. They were not kidding when they say it is three full days of appointments. It was at this point that I started to feel the anxiety building. Things have been getting real for a while now, but this made it even more so. I reached out to my family text and told them the kind of things I was worried about that they could help with, getting an Airbnb set up, making their travel plans, and generally anything that wasn’t actually doing the testing. They as always came through almost instantly. By the time my third viewing of the Cosmos episode was over I was feeling a bit better.  Thankfully I had a pretty full plate the next hour and was able to concentrate fully on the kids. 

I have to make a slight aside right here. My students have been so good about my absences and understanding my limitations. They are little rascals, don’t get me wrong, but they do have kind hearts. 

At the very end of class just as we had finished our work my phone started to ring. Normally when I have students I don’t answer but I saw that it was the Children’s Hospital in Omaha calling, I had a feeling they were trying to get something scheduled. I asked the kids to give me a moment and took the call. It was indeed a scheduler wanting to see if I could schedule my next heart cath…for tomorrow! Apparently, my team decided they wanted a heart cath before all of my other appointments and in order to give me my usual doctor the only day they could do it was tomorrow. That was not going to happen. I know the whole transplant process is hurry up and wait. I just didn’t know they would do all the hurry-up part while I did all the waiting. I asked for a different day with a different doctor and got it scheduled for two weeks from now. The stress level was hitting critical levels. It was time to call my mom. I sent my students to lunch and did just that, have I mentioned that all of this has happened and it was barely past noon? Mom talked me down and I was able to function the rest of the day without incident. 

It is now 7pm and I am exhausted. I have a feeling I will finish writing and posting this and be tucked away in bed before 9pm. This was just a Monday after a Friday when I was so tired I could not get out of my bed. Tomorrow is a Tuesday, and I will message my former doctors for records that my new doctors will need as I move forward, and maybe I’ll even get that dentist appointment scheduled too. Did you know you can’t get a heart if you have crappy teeth? Gotta get those pearly whites checked out. Thursday I get to go to the CPAP store because my old supplier couldn’t understand that I got a new machine and messed up my orders all the time. I did the right thing when I fired them but then I found out that in order to get my supplies from a new provider, I have to have an appointment to be taught to use a device I have been using for five years. It isn’t the person who answered the phone’s fault. The red tape is everywhere, and it makes me tired. I am very tired and it is only Monday.