Yesterday was a day to remember for sure. As most of you know, I am recovering from a foot injury. It has been four months now that I have been in a boot and completely non-weight bearing. I did manage to graduate from a tall boot to a short boot, but most would be healed by now. Not Lauren. So, yesterday morning I had a check-up. I was nervous hoping I could make a move forward, but prepared to hear I wasn't ready yet. To my surprise, I am now officially allowed to go without crutches. I still have to wear a boot for a while, but I can bear weight. It was such a feeling of gratitude, excitement, accomplishment, and all of the above. I also get to start physical therapy. Very light physical therapy, but I get to start. Baby steps towards success. Pun fully intended.
I then had an appointment about 2 hours away with my general surgeon who monitors my gastric stimulator. It gave me a few hours to eat lunch, get a little bit of exercise and get things together. I was assuming not much had changed. The stimulator is turned all the way up so I knew there was going to be no adjustments. I also knew that my last stimulator battery lasted about 4 years. I have had this one about 2 1/2 so we knew it was just a matter of time, especially with the settings all maxed out. I am not sure exactly what I expected.
As we have all become accustomed to, during COVID social interactions are being kept to a minimum so I have to enter all these appointments alone. This is a major struggle for me. I am a total introvert and horrible with small talk. I have social and generalized anxiety so sometimes it is almost paralyzing. That was where my focus was yesterday. My husband is a great buffer. He is a people person and a charmer. I just contribute to the conversation when I can otherwise I stay focused in on the issue at hand. My surgeon is a talker. How was I going to be able to be screened for COVID, enter the office and check in with a different person, be taken back by a nurse, and see the doctor without my anxiety taking control? I was giving myself out loud pep talks the whole way. My husband just kept telling me it would be over soon.
We get to the office and I bravely made my way to the front entrance hobbling on my newly usable booted foot. I made it in, was quickly checked in, then quickly taken back to a room. Luckily, they are all comfortable with me and know my history so it wasn't as bad as my anxiety makes me think it may be. When the doctor finally came in she got her little device all ready, set up shop on my belly, and instantly said, "Yup. It's dead." I had no response. She stepped back and asked "What would you like to do?" My mind and body went into a small tornado of thoughts and emotions.
We had talked in a previous appointment about what to do when the battery died. I need more surface area on abdomen to place my insulin pump and continuous glucose meter. The stimulator is about the size of a hockey puck on the lower left quadrant of my abdomen. It sticks out and sometimes hits my hip bone in funny places making it uncomfortable. I can't sleep on my belly and sleeping on my left side can get awkward. Because it was maxed out and I was still only getting very little relief from the gastroparesis I genuinely just wanted to take it out. The conclusion we came to at that previous appointment was to let it die, keep it in for 6 weeks or so and see how I felt after that just in case I was unaware of any benefits it may be having on me. At yesterday's appointment it showed that it died right about the time the world shut down, mid March to early April.
Due to the timing she said, "Well, it has been a few months so what do you think?" Now, remember I had just gotten the news I was allowed to weight bear so I was on cloud nine not ready to come down. She then decided to talk this out with me to help organize my thoughts. It was at that moment that I think she realized I was better when I had that moral support of my husband or family. She went into what my options would be so that my decision would be a fully informed one. Here's what she laid out for me.
First option is to remove the stimulator all together. If we did that she would simply remove the device, but leave the leads inside my body. Because they are connected to my stomach lining it is dangerous to try to remove them. It may perforate the stomach allowing sepsis to occur. There would be caps she could place at the end, but with no battery power there is no risk of shocking. I would still not be able to have MRI's due to the metal in the leads. That would be that and I would simply have the scars as battle wounds. That seems pretty straight forward. BUT imagine eating something like scrambled eggs yet feeling like you ate a super-sized McDonald's combo and a large pizza with all the toppings in one sitting. Do I want to risk having that feeling? I have been struggling with eggs recently yet they were all that kept me alive for years. They are so easy to digest when scrambled. Would this struggle get worse? Would I lose more weight? I lost 7 lbs since mid March.I was in the low 80's before the initial implant in 2013.
Second option is to change the battery. This would allow us to at least set it at the voltage I had just a few months ago. I really hadn't notice a physical feeling of difference since I last saw her. I didn't know it had died. I knew I was starting to really struggle with the easy foods and I started to notice I was becoming less interested in eating. I would force myself, but just the minimum, I really hadn't craved junk food. We all crave sugar or salt at some point. Yet, I couldn't pin point a moment of sudden change. Would I just regret putting in a new battery just to complain about how much I hate the stimulator being there? Oddly enough, even my own pride slipped in wondering what would people think if I made a bad decision. Who was I going to let down?
Third option is to finally give in to the feeding tube. She explained where it would be placed. It would leave my stomach available for "pleasure eating" but my nutrients would be coming from the feeding tube supplementation. I would have to feed for about 6-8 hours per day. She said most people do it at night so they can sleep through it and go about their day. Because I am a Type I diabetic the feeding may need to be broken up in 2 hour segments spread throughout the day. The positive of this would be a predictable stream of nutrients, including carbs, allowing me to better control my diabetes. With food randomly going through in bits and pieces, as it does now, it is really hard to get the right insulin dosages and timing to match when the small intestine will absorb the carbs that are ingested. This means, currently, I swing from high to low and back quite frequently. Now, hold onto that information. It is important to my final decision.'
I brought up blood sugar control. I highlighted what I just laid out for you. Of course, she agreed because we have talked in detail about it for years. Then it hit me. "It died back in March or April, right?" I asked. She confirmed. My mind was a reeling movie of the past few months. I remembered having a conversation with my sister in early April about how stressed I was over the entire COVID-19 pandemic situation. I was additionally frustrated at the time because my blood sugars had suddenly gotten even more erratic than usual even though I was being extra diligent. I figured it was stress....but, if...huh? If the stimulator died around that time that meant that my fluctuating numbers could be partly due to the fact that the stimulator had died. Although it was not giving me much relief it must have still been moving food in a somewhat rhythmic pattern I could follow to dose my insulin better. Huh? It could be a possibility.
That brought us to my final option. We replace the battery and if there is little relief we could put in the feeding tube and I would live with both. Wow. That would probably help a lot. I would love to be 10-20 lbs heavier and that option would get me there. It would also take up more belly space though. It would add additional attachments. Would I be able to cope with that in the long run? Or am I ready to try to cope with it knowing it is necessary? Tough one. She asked again what my thoughts were. I decided to say, "I think I need to digest this information a bit. Haha no pun intended there. (literally just came out that way) Let me process it and get back to you." She ended that with explaining we could get this done in one to two weeks if I let her know by Friday (this was Tuesday). I told her I would definitely get back to her before then because the weight of the decision would be too much to carry around for very long. I was still taken aback even more when she said one to two weeks. In previous years it had been a few months of prep time.
As I said earlier, this appointment was two hours away. That gave me time to think, but avoid thinking all at the same time. Again, just hours earlier I had received the great news that I could lose the crutches. I wanted to ride that high. I was enjoying it. The heaviness of this looming decision was allowing it to creep into my thoughts over and over. Getting rid of the stimulator all together would be ideal. I would love to have a little freedom over my own body again. But was it realistic? The feeding tube would help control my blood sugars protecting my eyes, heart and kidneys longer. And it would allow me to avoid force feeding myself. But it is a lot of maintenance. Then it hit me. It wouldn't affect my daily activities much, she had told me, but what about yoga and pilates? I have lived on chair workouts or floor workouts these past four months. I have to exercise. It is not a chore to me but a passion. I am not able to run so would I just have to take long walks for the rest of my life? I'd be walking like Forrest Gump ran. Could I lose another passion? I have already given up so much. These thoughts rolled on and on while I vocalized them as they came. I probably was not even talking in a linear fashion anymore, but my husband listened.
About 2/3 of the way home I just said "That's what I have to do..." After a long pause I laid out my logic. I am not ready to give up yoga, pilates, or floor barre workouts. They make my body feel so good releasing my mind and keeping me grounded. It's meditation and prayer. It would be like losing running and basketball. Devastating. That means the feeding tube is out. I am not ready. The battery has been dead about the same amount of time as my blood sugars have decided to go haywire. I cannot afford to lose more vision. I cannot afford to lose my sight. I cannot treat my organs as if they are expendable. I have to make a decision that is beneficial to my health overall. I hate having to wear an insulin pump. It is uncomfortable and highly inconvenient as well as a lot of maintenance. Yet, I do it because I have to control my diabetes. I have to look at my stimulator as if it were a different form of medication/treatment. Just because it is uncomfortable and inconvenient is that a reason to bury my head in the sand and toss it to the curb? No. My blood sugars were better prior to March whether or not my belly felt any different. I have to replace the battery. I decided to sit on that decision and sleep on it. AND PRAY...HARD!
That's exactly what I did while barely sleeping last night. I woke up and got my son ready for school and my husband set out to work. I started one of my favorite chair cardio videos. This one is challenging and long, perfect for a lot of thinking to be done. Somewhere in the middle it hit me clear as a bell. I can still do chair cardio while recovering. See, I had been worried that any surgery was going to interfere with my foot rehab as well as taking away physical activity for a while. That won't be the case. I can do it all, just balance it. The battery replacement is an out-patient surgery. The first week or two you have to take it very slow, but the recovery time is 3-6 months. That's what I recall from 2017. Physical therapy for my foot was scheduled to start next week. I could still do that rehab while recovering from my surgery because it is my foot and ankle that need light PT for a few weeks before moving up to a more rigorous rehab regimen. Chair cardio places no impact on your feet AND it is not pulling, twisting, or bending your body so my belly can heal. In time I will be able to walk and do yoga and pilates. On top of that, we have a beautiful new elliptical machine gifted to us days before I broke my foot. I will have that option as well. Yay for sanity! "That's the best choice. That's what I need to do." So, as soon as I was done working out I called the doctor's office before I lost my emotional strength. "I want to replace the battery." I told the nurse.
About two short hours later I get a call from my surgeon's office. The voice sweetly said, "Are you available Tuesday?" Surprised I asked, "This Tuesday?" My face was fully twisted. "Yes. Tuesday the 8th. Let's do the surgery Tuesday the 8th." I knew I had nothing scheduled that day so before I let my mind go too far and my frightened emotions take hold I agreed. She gave me some instructions I am sure I will forget. My mind was spinning. I just kept thinking "What is today? Wednesday? Yeah, Wednesday. Next Tuesday?! Really? Ok." Same thought going and going as she went on. I jotted down a few notes, but told her I assume someone will walk me through this as the week goes on. I quickly called my husband once we hung up. His first words "WHAT? TUESDAY?" then silence. Uh oh. What did I just do? I suddenly panicked. He took a breath, explained he was just caught off guard, but let's do it. He had literally only told his boss minutes before that a possible surgery could be happening this month. We didn't expect 6 days from now.
Here is the interesting thing that is so very important to document. We are living in the COVID-19 pandemic of 2020. I have to self isolate for 5 days prior to the surgery. That is no problem. Being high risk I am already self isolating. I also need to get tested for COVID-19 before the surgery. Remember me going into these appointments alone. Well, surgery is no different. Like anyone who is entering a hospital these days, I will be going into this surgery alone. I will fall asleep with only medical professionals surrounding me. I will wake up with only medical professionals surrounding me. You know how I get incredible anxiety in social situations? This will be insane. I will be at my most vulnerable in one of the most terrifying situations in my life. I may sound dramatic, but the struggle is real. This will be an interesting experience to say the least! All I can hold onto is that this will make me a better and stronger person in the end. I may suffer from shyness and anxiety my whole life. Oh well. It will be hard. Oh well. I will come out better because of it; better for my health, better for my family, better for taking care of me.
I will walk away from this with better blood sugar control. I will be preserving my sight, heart, and kidneys. I will be a strong example for my son. I will be here longer for my son. I will have faced a fear and overcome it. I can do this. I will still have my exercise to release all the pent up energy I have. I will be able to eat eggs without the feeling of bricks in my belly. There is always a rainbow. I will come out the other side brighter and prettier inside and out. Let's get 'er done!
e
No comments:
Post a Comment