The last few weeks have been rough. I keep getting piled on with health issues. I can’t get ahead of or on top of anything it seems this year and we are almost 3 months in. I have been in and out of doctor offices, phone calls to the doctor, pharmacies, and researching. I just kept wallowing in all of this and getting stressed out. I got on Instagram one night and it hit me. I haven’t been talking about my chronic illnesses like I used to or blogging in detail like I was. I can’t even be an advocate for patients or offer any advice. I realized one of two things. One I could just forget about trying to raise so much awareness and give patients insight and helpful information, and just drop that on Instagram and maybe my blog (this is the depression speaking loud and clear again) however, the second thing I realized is “You can lead a horse to water but you can’t make it drink” -John Heywood. I started to reflect on myself and I thought, how can I talk and advocate for other people but I can’t do it for myself? This past week I got things to move again. I fought for my body and myself and stood up and if I can show even just one patient you too can fight for yourself then I feel good. Some of my doctors are amazing and never make me feel like I have to fight for myself but sometimes I have to advocate. I mean, patients are their own advocate. Just like I try to explain what it’s like living with chronic illnesses, no one truly knows what I feel like. No cases are the same and everyone is different. I realized what good am I doing for myself and for others if I’m not explaining how difficult it is to my doctors, because in the end, that’s hurting me. I’ve always been honest, but sometimes during an appointment I would just sit there and take it. Now I’m standing up for myself. The first time I was terrified and anxious to “disagree with a doctor”. Once I really did it I realized I can do this – I can fight for myself.
I got sick around the last week of January. While we didn’t go to get a confirmation I had symptoms of Influenza B. So when I finally got over that my stomach pain decided to make it’s presence known again. My scheduled ct scan was done and they didn’t find anything wrong. I was mad at first and still am. I’m glad it’s nothing serious but where are my answers?! This wasn’t supposed to be like what I deal with. I wanted a clear cut and fast diagnosis. Here we are 7 months later and still no answers except there is some inflammation/ gastritis in my stomach. We’ve crossed things off but haven’t received a lot of help to relieve pain. We are kind of at a stand still again. I know I need to call and ask what’s next but I don’t want to. Why is it always the patients job to make all the calls and get the ball moving again? I’ve been doing a lot of looking around to find a doctor that deals with POTS. There are some gastrointestinal diseases that strongly correlate with POTS. So I’m thinking that seeing a doctor that really knows about POTS will be a good idea. I’ve been checking college hospitals, etc. I want to go somewhere where I can really get help and answers. Maybe they won’t have answers right away but if they can help relieve anything I would be grateful. I haven’t been seen by a rheumatologist in about 5 months. Plus to add all to this when I thought ok I will finally be over all this and everything will settle down. As some of you know I’ve been dealing with hives since May 2019. They come and go but my doctor has me take extra allergy meds and Benadryl and usually it calms the hives and stuff down. These last 2 weeks it decided to take the crazy route again. I was breaking out with hives to a shirt I wore, wore it the next week and no reaction. Sitting in a car random hives while I was on both allergy meds etc. So another round of steroids. I asked if I could be referred to an allergist to see what’s going on. My doctor was thinking the exact same thing. I don’t have too long to wait for that which is good.
Today after school I had to call 2 doctors back and I know it doesn’t sound like a big deal but when you do it a lot and they aren’t just quick conversations either. It exhausts me and all I want to do is curl up in a blanket and watch some Netflix and leave all the electronics somewhere else. I just want a week with no doctors and no medical things at all. So last week when the allergies started getting bad I was trying to deal with it. Some of you may know that in 2013 I had to get a right ovarian cyst removed due to twisting and size. The medicine they use to try and prevent them (which is birth control) usually work. I’ve been on this medication for about 6-7 years and it’s not working. I’ve had what I’m 99% sure are ovarian cysts and some are popping based on the pain severity and other symptoms. So I go back to that doctor next week to figure out what to do and why I’m in this much pain. I’ve had a lot of questions and feelings like this isn’t how life is supposed to go. I feel mad, and frustrated, and why me like what did I do wrong, etc. I needed to get out of Indiana and leave for a few days and go on “vacation mode” and I’m not calling doctors because I need a break.
Last week we planned to go to an Iowa Basketball game a birthday tradition I always enjoy. Since Dad has died for my birthday we try to go out to Iowa and watch a basketball game. It’s a connection with Dad so it feels like there’s a little piece of him with us. I definitely got my love for Iowa from my Dad and Grandma (and that whole side of the family). I’m pretty sure my Dad had a shirt that said “Is this heaven? No this is Iowa.” which is a popular saying from Iowa. I can’t explain it but being in Iowa City, Iowa is healing medicine for me. It’s a place I go to reset and focus on family time and memories. I’m not looking at doctor offices or worrying about anything. It is truly a slice of heaven for me and a place I can’t begin to explain. I haven’t been to Disney World I’ve wanted to go but for me Iowa is Disney World. It’s where magic happens and where my dreams come true. A few years ago I saw my first game in Kinnick Stadium and I couldn’t even contain my excitement. Anyways we went out this summer in July for a family reunion. There is nothing like being in Iowa where this side of the family started, and to hear the stories and see where/how they lived. It’s more than just another state. In July was when the gallbladder pain started we weren’t sure how I would be traveling. I looked at Mom and said “All I need is Iowa air and it will help me feel better.” I can honestly tell you that week the Iowa air worked it’s little magic. Was I in pain? Yes. Was the pain reduced? Yes. Why? It’s the magic in Iowa air but all kidding aside it’s a place that brings me so much happiness I basically am blocking out the pain. I wish it was this easy and I could do this at home but it’s different. At home I see familiar things I know doctor appointments are coming up, I see Dr offices, and life gets overwhelming. But for that time I spend in Iowa it’s truly so good for me. So when I need to get away and I need a break my first choice is always Iowa.
So after these last two weeks I’m so excited to go back to my second home. (I haven’t ever lived in Iowa but my Dad was born at the University Hospital and he always joked they injected him with Hawkeye blood. He lived in Kalona, Iowa for about 6 months. He loved telling people he was born in Iowa and lived in Iowa). There are so many connections that it truly feels like a second home to me. Just typing this has me so excited to go back and watch a basketball game! I can’t wait to watch this season “in person”. These boys have put in hard work to get to where they are playing. Luka Garza dealt with a lot last year before and during the 2018-2019 season. Just before the season he had a 9 pound cyst removed. He played last year but nothing like where he is now because he was recovering. He had this hardship and he worked so hard to get to where he is today. Jordan Bohannon is such a fun player to watch. This was going to be his senior year of basketball season. He had to get hip surgery. He tried to play some early games and then applied for a medical redshirt. He loved playing basketball and loved shooting 3s at any Big Ten arena. You could see it on his face how much he loved the game. There was one game where they kind of focused on Jordan sitting on the bench. I don’t know if it was a focused face or if it was a face of sadness. In that little moment I connected to how I’ve been feeling. Like him, we are both sitting on this bench watching people pass by “playing the game/ getting help and getting diagnosed or the answers they need.” I realized life is always moving in front of us when you sit on the bench. It’s overwhelming to take it all in bit by bit. I’m on social media and see all these healthy people living a life I could only dream of. Why am I stuck on this bench when the doctors “aren’t letting me play”? In counseling lately we’ve been working on shifting my mindset a little bit. So as I sat on this “bench” I realized there is probably someone behind me sitting on their “bench” wishing for something I had and they didn’t for example a medicine, or that I can work, etc. We can all be sitting on a bench. Do you know what else someone on the bench does? They are there for their teammates, they are a part of the team cheering them on. So while I’m stuck in this pit of things piling up and not getting answers I try and focus on positive things like I am able to blog, I am able to still “cheer” on other patients and caregivers and tell you and show you that you matter.
We don’t have to have all the answers right now. I want answers but I began thinking in life there is always going to be something we need. So I’m on the “bench” but I am cheering for you and enjoying the moments I can of this life. So to the Iowa basketball team especially Jordan & Luka. & Fran McCaffery. Thank you. This team has shown a lot of people there is so much more to basketball than just one game or the end result. You have to work towards your dream everyday -there will be big bumps and potholes but there will be smooth parts. Right now I’m in a pothole but I know I can get back on the smooth road again.
So I’m looking forward to this trip out to Iowa it’s going to be good and I’m going to enjoy the Iowa air as much as I can and when I come back home I’m taking charge and truly advocating for myself.