Chronic Illness, Gastroparesis, Grad School, PCOS

Focus on the Wins

My one year anniversary of getting diagnosed with gastroparesis happened on May 12th. 1 year of knowing what was plaguing my body. Leading up to this day I was worried I would be a total wreck emotionally. 3 days earlier on May 9, I had a huge exam that had been causing stress for me and my classmates for a while. Having May 12th looming over my head didn’t help in the slightest. It really started to get to me. Thinking about how much worse off I was, how I may keep getting worse, and not knowing the future. The GP diagnosis blindsided me completely and was a lot to think about. Especially as so many fears had poured into my head that night after the diagnosis. In the midst of all of this near the anniversary, I got this text from my friend:

“I think you have had a lot of wins, and it is best to focus on those instead of the troubling things that have come up.”

It is beyond simple to let the wins slip through the cracks when day in and day out you are stressed, nauseous, in pain, and tired. We can get stuck in the monotony and negatives of dealing with this. When you are in the trenches of living with a chronic illness you can live day to day waiting for things to ease up a little. It is easy to focus about how things might get worse or worry about what your condition will be like in a few years and how that could ruin your life. I know I get stuck in that occasionally, especially with flare ups. But you have to look back and find your victories, notice your conquered mountains, look to all the moments of sunlight and joy, and just simply celebrate the wins. For me one of the big things was having survived my first year of PT school when it seemed like body was working against me and trying to derail the plan. I have many amazing things set up for the next year. I graduated college a few weeks ago. And even beyond the big things, I had tiny wins that were worth celebrating too. Like enjoying a night out with friends even though I couldn’t eat.

Find the little things, find the big things, write them down, and keep a list. On days where it gets hard or scary, look at that list and remind yourself the amount of times you have won. Remind yourself that deep inside is a superhero fighting and winning on a daily basis. Chronic illness can’t stop you from finding those wins. They are much more joyful and a better focus than the negatives of dealing with a malfunctioning body.

Choose your favorite win and the next time you don’t think you can do it, remind yourself you can. You’ve done it before and will do it again. Plans change and life causes things to turn upside but that will never change how much you have already done and will continue to do. Remember, focus on your wins and celebrate them!

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Chronic Illness, Gastroparesis

Never Give Up

It is really super duper easy to have moments when the anxiety takes over and an appointment is coming up. For me that is happening right now. It isn’t easy. It really sucks a lot. I cried in the middle of school today (not my proudest moment). I had a nice big conversation with one of my friends about the current state of my health. Mostly right now what sucks is that I have no clue what to do next. I tried erythromycin for my gastroparesis and while it gave me 7 really awesome days, that is all it did. I am coming to the end of using it. So right now a lot of friends are asking what the next step is. And in the moment it is really easy to feel like there is no next step, like I have exhausted all the options. But that isn’t even remotely close to true. The conversation with my friend made me realize that a lot. She told me so many things just in general that could help and they all make total sense. Even if not specific to GP they could help. One of the suggestions will totally be coming up on Friday at my appointment. But the biggest thing she said that is easy to lose track of it that I always need to fight and advocate for myself. If my doctors say there isn’t anything else to do, to get another opinion because there is so much out there and I need to be able to help myself get through this. And I need to have people on my side that are going to work with me to make it happen. Which I sometimes forget. That I am in control and I can do this. I am fighting and no matter what there will be a point I am able to have things figured out more and under control. It just takes someone hammering it into your head for it to sink in a little.

Chronic Illness, Gastroparesis

The Little Joys (It’s Raining Zofran!)

Appointment days can suck the life out of you very quickly. For me, each appointment is mentally and emotionally draining. I am 3 hours out from it and the exhaustion is setting in quickly. Appointments not matter how standard give me massive anxiety. The second I sat down in the waiting room my hands started shaking and my heart started pounding. Later the nurse asked if I was nervous since my heart rate was elevated. After my doctor busted into the room smiling while I was having my BP taken by the nurse she mentioned that while I was nervous my doctor was obviously very excited to see me. Which is true, my GI is a freaking ray of sunshine and I owe so much to her.

Things have been worse symptomatically so I was nervous what my GI would say. I was also nervous about whether she would let me start tapering off my Protonix as she had originally said. There is generally a lot going on and we don’t quite know why everything is going on. PT school makes everything worse. When I told my GI everything came flaring back the first day of the semester she told me that was what we unfortunately expected (which is true). I am also a magnet for neurological side effects so both my GI and I aren’t comfortable with some treatments and others are off the table because they would affect my ability to succeed in grad school. There really aren’t many options left and we generally have to pick and chose what to focus on. I had to make hard decisions about treatment and which I wanted first because we already know I will likely negatively react to both and we need to make sure that we know what is causing the issues. It isn’t easy at all. It’s frustrating to know that options are limited in the first place because of lack of options from lack of research. It gets worse when you know it is because your body can’t handle treatments. Like if a body stops working it should at least tolerate treatments.

I always try to pick out one great thing from the appointment to keep me positive. In this case it was eh tapering off Protonix! I have 28 more days left if things go well (I’m staying optimistic about this). I may finally get a break from the headaches! I also have a treatment lined up for my gastroparesis in case things keep staying flared and terrible. Then I have something to work on to try to improve some other symptoms. It is a bunch of tiny baby steps but at least things are moving forward in the right direction. I have a great team both medically and in terms of family/friends by my side which makes this all a billion times easier. Most notably medically I have my kickass GI who did a great thing when she went it and refilled my Zofran. She tested the limits on how much I could get covered and the result is a lot of Zofran saving me a lot of money!

Chronic Illness, Gastroparesis, Grad School

Snow and Cancelled Appointments

Chances are if you are living in the northeast and had a doctor’s appointment today, you were out of luck and it was cancelled. This is exactly what happened to me. I kept holding on hope that the blizzard wouldn’t be that severe or that by some miracle it would still happen. Unfortunately the call came early in the morning that all outpatient appointments were cancelled. Now if my appointment was about a cold or a minor issue or likely any other followup I have ever had, I would have been slightly annoyed but moved right on along. Recently I have been struggling a lot with the lack of control I have due to gastroparesis and my lovely bunch of conditions. Which is true of chronic illness in general, you can plan all you want but we all know our bodies do what they want, flare when they want, and live a life not restrained by rules. It can be hard to deal with at times and feel like your illnesses are winning and that you have no control. I was beyond exciting that I had control of one tiny thing: the timing of the wean off pantoprazole. Granted it had to be within a certain time frame of starting and ultimately my GI decides how that is going down. But I know my body and what it needs. From what I saw the first few days in each step of the taper process are the worst. As a result I thought I was winning at life when I realized if I made the appointment for the start of spring break I would have a good 5 days to adjust. The next step in tapering would start the day after an exam giving me the least stressful part of the unit to adjust again. But that would be too amazing. So of course the blizzard hits the day of this appointment, not the day after or before but the day of. I was beyond upset because as we know with specialists, the wait is usually at least 2 weeks. For someone who has been dealing with side effects daily, I was using March 14th as a finish line to help me push past the pain. So remember it isn’t always overreacting over an appointment. These appointments with specialists are things we have waited months for and may now have to wait a few more weeks for. If you are in the same situation know you can do it and the next one will come soon!

Chronic Illness, Gastroparesis, Grad School

“Future Related Anxiety”

One of the lectures I had last week was on perceptions of people with illnesses. In regard to chronic illness the powerpoint stated that in that population there is future related anxiety. Now considering I am someone with a chronic illness I really relate to this.

Today is one of the days where my “future related anxiety” is off the charts.

It also happens to be a day where one year ago I realized I was about to find out if the nausea was a side effect will possibility of a fluke or something stupid being the cause. Spoiler alert it wasn’t a side effect or a fluke. But days like today always get my head spinning in the direction I probably shouldn’t have it spinning. Looking back to a year ago my symptoms were nothing compared to what they are now. I wish I could go back and relive that because as hard as it was at the time it was a piece of cake compared to everything now. Life was easier, school was easier, and I was blissfully unaware. Now I am totally aware what the three options are with gastroparesis – remission, stability, or disease progression. Unfortunately I fall into the disease progression category. It is frustrating to look back to how it was a year ago when in the moment I am struggling with it so much. Today was a really rough day with lots of symptoms and hard lectures where I was having trouble concentrating because of the pain, nausea, etc. I need a break from my anti-nausea med so I was toughing it out hardcore. But at the end of the day I was so exhausted and the emotions of it all are hitting me. How am I going to get through the day working with multiple patients? How am I going to do research on top of everything else? How much worse will it get? Not being able to be a PT is my worst nightmare. I wish I knew who to talk to right now that could let me know it will be okay no matter what. Someone to tell me how to get through this. Because the anxiety and fear about my future is hitting very hard. I am questioning all my decisions for next year. I don’t know where I will be a year from now and how my health will be. I am pushing through to the end but I worry that I continue to get worse and then make things harder for everyone else. I have so many dreams and goals and I hope I achieve them all. But I know the realities of chronic illness and how unpredictable it is. But I’m continuing to fight and push through like always.

Chronic Illness, Gastroparesis, Grad School

The Little Things

One of the superpowers that comes along with chronic illness is finding the joy in the really little and seemingly inconsequential things. The little things that to a random person wouldn’t mean anything or the happiness would be beyond their grasp. Today I had a celebrating the little things day.

I am nauseous almost every single day. Not all day, but rare is the day I don’t mark off a nausea column on my symptom tracker. Today I had the wonderful honor of not needing to do that. I got my first nausea free day after a 34 day streak. I also had my first day with no lightheadedness after 2 weeks of dealing with that.

Of course tomorrow it could all come back with a vengeance and probably will. Today also wasn’t all sunshine and rainbows as some other symptoms stole the spotlight plus I am dealing with a cold. However, I did get a little break from those symptoms and that makes me happy. These are the moments that help keep me strong and replenish my strength and will to fight this day in and day out. It helps me maintain the hope that someday the symptoms may start subsiding instead of continuing to get worse. At the end of the day, without hope it is hard to keep doing this. It is hard to maintain the attitude that carries you through the worst days and the days where you just can’t do another day of feeling sick. Days where I have some little things going right are the reminder that there is always a break in the chaos even if for a short time.

So today I get to recharge my batteries a little bit with these awesome little things that happened. Hopefully the next day like this is better and closer than 34 days away, but I am ready to do all I can to get that good day to come as quickly as possible.

But for now, I’m taking advantage of the lull in my gastroparesis and knocking out some neurology lectures on CNS injury.

 

 

Chronic Illness, Gastroparesis, Grad School, PCOS

My Inner Superhero

I have wanted to start a blog since about a month after my PCOS diagnosis. I didn’t know what I would want to write about. However, as time went on and illness and condition after illness and condition was added to my chart and life the desire grew stronger. There was more I wanted to share and more I wanted to do. I wanted a space to share my journey to help those who are following a similar path and might be scared after their diagnosis or want to find someone like them. I wish a blog like this existed after I was diagnosed with gastroparesis and trying to find out how to handle gastroparesis, grad school, and eventually working in a health care profession. I am still only on the grad school part but every day brings me closer to living my dreams. I finally bit the bullet so here we are.

Now came the hard choice of a title. It quickly dawned on me that “my inner superhero” was the only thing that would make sense. A few months ago I decided that every person living with a chronic medical condition/illness has a little extra superhero within them. This isn’t some new concept, but it finally clicked in my head. To be living every day with whatever symptom our bodies throw our way and continue to thrive the best we can, is a superpower within itself. Whenever I talk with new spoonie friends or someone asks for advice, I always remind them of their inner superhero. If I have a rough morning and am upset on my way to school I just breath and remind myself of that inner superhero. It’s one of my strategies to keep moving forward no matter what happens.

I’m not sure what direction this blog will take. It will likely be as unpredictable as my life, but my goal is to share my story, raise awareness, and have fun along the way 🙂

So it’s capes on and heads high on this journey with chronic illness!