Land of the Undiagnosed

Living in the land of undiagnosed is not a glamorous lifestyle by any stretch of the imagination. If the land of undiagnosed were a physical place it would be a gigantic swamp with some quicksand mixed in. Around it would be surrounded by sunny skies and beautiful rolling hills. But you have to pass through the swamp to get there first. In school one of my professors mentioned that it is a 50/50 thing whether having a diagnosis helps someone emotionally. I fully believe it does. When you are living with enormous amounts of uncertainty and have no freaking clue where your illness is taking you or what it even is called, it begins to wear on you. You sit there staring at your multiple pill bottles crying because it is a lot to handle and all of this isn’t even working for a concrete illness. It is hard to sit there and remember that in the next day you are starting to make the next step on the journey to figuring out a diagnosis. But at the same time being resistant to that process because you cannot stand the idea of a diagnosis that is going to pull me away from becoming a PT.

Right now it feels like a lot of life is upside down. A lot of diagnoses are changing, my symptoms are changing, and in school it is the time of year to start choosing which clinical sites we want for our 6 month clinical. It is hard to be in this phase of life where literally everything comes with a degree of uncertainty. And school never in a million years will slow down to give you a minute to rest and take a break because that isn’t how it is supposed to go. We are all supposed to push non-stop, but there comes a point where you push too hard. And with grad school that point is easy to get to, more so with a chronic illness. I am so frustrated and scared because I just want to have answers and know what I can do to feel better instead of feeling helpless. Feeling helpless sucks and is such a hard feeling.  The feeling of not having control over your health in some ways, which in turn takes away some control from life, and you just want control. So you do what you can to feel like you are in control in some way even though you really aren’t. It is a hard thing to deal with and it isn’t a journey for everyone. And while everyone who is struggling right now I believe is stronger than the average individual, it is because of necessity and not because of some magic skills we possess to be stronger than the average person. Dealing with being undiagnosed and with the uncertainty of chronic illness causes a toughness unique to the situation because you can’t just stop functioning. And so you just keep pushing because it is the only thing you can do. And you fight until you get out of the land of undiagnosed.

The Importance of Taking a Break

I am the first to push through and not stop for my chronic illnesses. Like yes I complain and get sad, but no matter what, I never give up pushing in school and in life to live to my potential. I always thought this was the best thing to do. Because you can’t let your illness win. Because giving anything less than what your healthy classmates can do means you aren’t doing as well. Trust me, I have felt my fair share of guilt, even when doing totally fine. I have just finished up my 11th month of PT school. I have had this mindset the whole time. Whenever I meet with my adviser to give her an update because I prefer to keep her in the loop to some extent, she asks if there is anything she can do. (Which is something I completely support – having support at school is essential for success.) I always tell her no for exactly the reasons mentioned above. I don’t want special treatment or anything extra that might just shine a light to the fact that I am different. That is until this past week.

This past week, the year of pushing through everything finally hit. I’m surprised it took this long. I personally felt like a zombie at the end of the week and can only imagine how I looked. It was a combo of pushing too hard in school, not listening to my body, and dealing with the realization that I am out of treatments for my GP currently. It was the perfect storm that led to a mess of a week. It sucks to admit, but it happened. There was a lot of friend support and pushing me through and a lot of crying. I ended up leaving school early Friday because I reached a point where I had nothing left to give. If I had stayed I would only be making everything worse and not retain a single thing. My adviser agreed and supported my decision to leave that day. It was hard. I have never missed class for anything but an appointment. I never wanted to miss class because that in my head meant the disease wins. But this weekend I have come to the realization that taking a break is sometimes the best thing you can do. I need to take more time for myself and realize when things are heading south and I need to step away. You know, before I actually hit rock bottom. It is hard but important to remember that there are more bumps in the road for me. More feeling sick. More emotions. This just means I need to listen to what my body is saying and take a step back when necessary as to not completely burn out. There is too much focus on blending in as if you were healthy, that ultimately that amount of time faking will finally end. There needs to be support and someone willing to tell you to take a step back, even when you don’t want to. It is worth it in the end to do what is best for YOU. Not what is best for your grades or reputation but what is best for your own sanity. At the end of the day you are the only one to stop you from going crazy.

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!

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.

The Chronic Illness Village

I firmly believe that it takes a village to get through life with a chronic illness. You need people to help you through the worst, to share the best moments with, to get opinions from when needed, and to help give life more normalcy. My life isn’t close to normal right now. I’m in a unique situation with school, I have gastroparesis, and a lot of other things too. Some days like this past week it took a village and a half to get me through. Making decisions is one of the hardest parts of my life with gastroparesis. Medication choices come with a laundry list of scary side effects that you never want to really think about. But I am at a point where I want a treatment because I am sick and tired of feeling like this everyday. Plus I just finished a 3 month round of pantoprazole in an effort to get rid of my gastritis and ulcer. So this is prime time. However, added bonus is being a side effect magnet, especially those neurological side effects like lightheadedness. So that puts Reglan out of the running immediately. Botox isn’t covered by my new insurance even it is the ideal treatment after a successful administration in June. So we are left with pesky old Erythromycin. Now I would be fine with this, except there is a little warning about long qt syndrome that jacks up my anxiety a lot. So here is where my village comes in. They helped me maintain normalcy and reminded me of other things, keeping me distracted enough to not worry about it until I had a chance to talk with my doctors. At which point I had an EKG and found out I was in the best spot to be starting and that I would get repeat EKGs. My medical team is full of caring superstars.

Beyond that I go to school with a group of 118 other people. 59 are in my class and 59 in the year above. We all rock grad school together and help each other get through. This group of 118 has helped me get through these first 8 months of the program. They provide joy, share the same goals (which is huge), help motivate me to be better, and give a space in which to vent. It is a definitely a team effort at points. I am also super lucky because some of the second years who we don’t interact with as much, have seen me at my worst and have helped remind me that I will get through. This happened on Thursday when I had abdominal pain that was my first symptom of my ulcer/gastritis and hadn’t felt since before the diagnosis of those 2. I was waiting for a review session to start when the pain hit and all of a sudden my emotions flooded and I went into a panic and was a minute away from bawling. A second year came up and asked how I was and my voice started to crack and she talked with me for a minute, calming me down enough to get through that review. Without her, I would have cried for over an hour likely. It is people like that who are in my village that make this whole thing just the tiniest bit easier. They are my flickering candle and sunlight when everything else seems dark. This is why I share my struggles, because I could never in a 1000 years get through this alone.

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!

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!

“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.

PCOS and “The Internet is a Scary Place”

There is something unique about the day you decide that the symptoms you have been experiencing aren’t normal. That there is something that isn’t quite right. With subsequent new symptoms you get into the routine of what to do and who to talk to. But nothing will ever compare to the first time it dawns on you that you need the help of a doctor and life may change.

For me that day happened in early 2015. It had been an inkling of an idea in the back of my mind for much longer. That was the moment where it all suddenly became much more real and I knew I needed to talk to a doctor. I got my first and so far only dose of a doctor not believing me. I was told the internet is a scary place and that he would run blood work and we would see from there if it was PCOS. Mind you I had hirsutism, irregular periods, terrible acne, thin hair, and the classic fat distribution for PCOS. In addition my labs pointed even more towards PCOS but somehow I was told that I didn’t have PCOS and to come back in a year. I hope I never have to see that health care provider again. If I do (possibly this week) I will gladly fill him in on everything that he missed.

I went home that day feeling defeated that I didn’t get the answer I needed. I knew something wasn’t right, my experience matched those of so many others with PCOS and here I couldn’t get a diagnosis.

I went straight to the “very scary” internet and found the best of the best for PCOS in my area. I chose one after a long week of thinking and deciding and called the office to schedule an appointment. The closest appointment was in 4 months. That seemed like an eternity away but in the end it was so worth it. August 2015 came around, my doctor walked into the exam room and diagnosed me with PCOS within 5 minutes. She did a thorough exam and labs of her own and the diagnosis stuck along with shock from her that I hadn’t been diagnosed earlier. Beyond all of that I met a fantastic physician who would be extremely instrumental in the diagnosis of later conditions. I am very lucky to hit it out of the park with this choice. Good physicians make all the difference in the chronic illness journey. That day I got someone who believed in me. Someone that listens to me every time I get a new symptom that I know isn’t normal or right. She makes every experience of having a new symptom easier.

That first time is hard, as is every time after it. But that first one hits home the most because this is where I was introduced into the world of chronic medical conditions. Introduced into the world of taking prescription medication every day. Introduced into a community that would start to help me through the really hard days. It was here I became stronger and more resilient. At that point I had no clue where my body would take me and how much worse it would get, but at that point this was the day my life changed forever. I now can draw a distinction before pre August 3rd me and post August 3rd me. All because I decided something wasn’t right and that this was something that required attention. Life changed in a major way. My story was just beginning.

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.