The Brain Tumor

When you find out that a loved one has a brain tumor, your world stops for a second. Everything shuts down and all you can think about are the times when you didn’t tell them you loved them, or you let go of a hug too soon.

For me, the brain tumor was in my dad’s head and I found out over winter break. I had been home for almost three weeks before he went into the hospital and we found out about the tumor. For me, the hardest part was that for those three weeks my dad and I argued a lot. It was clear to me that he was not functioning at a normal level, and I thought that he was doing it to himself. Now, looking back, I can see that that was all due to the brain tumor. It hurts knowing that the last memories he has of be before the surgery is us arguing.

He made it through the surgery, and they think they got it all out, but is was cancerous, so after rehab he will be undergoing treatment for the cancer.

I only saw him once after his surgery, and he was really out of it and doesn’t remember much of that visit. His memory is still a waiting game to see if he will have any short term memory.

His outlook is beyond positive though. He doesn’t want this to upset the family, and he can laugh about the things that are troubling him. Like how it can take him a half hour to get dressed in the morning.

Another hard part of this has been being able to still focus on my health. I have an appointment with a new doctor coming up and I was tempted to cancel it, because why should my health take precedent when Dad has brain cancer?

I credit not giving up, or slacking on my own health, to my mom. With her, everything was normal, with just the added news that it would take some time for Dad to recover and we would be there for him. Without her steady presence, I don’t know how any of us would have gotten through this.

Another steady presence has been my boyfriend, who has held me through the bouts of crying and not knowing is he would be okay.

Cry when you need to, realize that some parts of recovery will be overwhelming, but you still matter. Your thoughts and feelings still matter.

 

~Maddie

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Body Image from a Sick Kid

I have postural orthostatic tachycardia syndrome (POTS). A part of that for me is that I have trouble gaining weight and maintaining a healthy weight.

I have never hated my body for how it looks, even before I got sick. I grew up playing sports, and to me my body was just something that I used. It was a tool that I could use to accomplish a goal. Through being sick, my view on my body has changed. Now I see it as something that I have to put work into to see a reward.

I take my medication so that I can get out of bed and become a functional human. Without that added step, I would not be able to get out of bed.

I drink a lot of water to keep my blood pressure from dropping, and causing me to pass out.

I wear compression socks so that I can stand for longer than twenty minutes.

These are only some of the things that I do every day to take my body from what it is, to functional. The rough days are when I do everything that I am supposed to do, and I still can’t function. But that is a topic for another day.

When I look in the mirror now, I see someone who has fought through so much to be standing today. I see someone who is still fighting and trying to make the most out of every day. I see a body that is failing me, but is trying. I see a body that needs help, that needs work, that is unpredictable. But, no matter how I am feeling, I got up, I stood up and am able to stand in front of that mirror. For me, that is a big deal, and I thank my body for the good days. The days when I don’t have to think about my blood pressure, or heart rate. When I don’t have to focus on how much water I drank, or the last time I took my medication. The days when I feel normal.

I have always grown up with doctors telling me that I am too skinny. That I need to gain weight. Looking back on it, this could have been really destructive to a young girl, bring told by a professional that you are not right. I give credit to my parents, for always telling me that I am beautiful and backing me up when I say that I eat a lot, which I do.

Now, however, my weight is a larger concern, because if I get sick (on-top of the normal sick) my body needs the extra weight to be able to fight as best it can. So, not I do everything I can to gain weight. I do my best to give my body the resources it needs, knowing full well that the next time I am weighed by the doctors they are going to tell me that I am still too skinny.

Looking in the mirror I know that I am skinny. I can clearly see it, but that’s not what I focus on. I focus on the fact that I ate all I could today, that I didn’t pass out, that I took the nap I needed.

When I look in the mirror I see everything that I have gone through in order to be standing today. This is the body that I was given, and I am determined to make the most of it.

 

~Maddie

The Start of a Headache

This morning I woke up with a headache. It was’t really that bad, maybe a four our of ten when I woke up, but then came the hard decision of whether to stay put and try and make it go away, or do what I need to get done today, and make it worse.

Unfortunately, it is nearing the end of the semester and there are a lot of things that I have to get done. So I put on comfy cloths, grabbed my water bottle, and prepared for a long headache day.

By the time my homework was done, around noon, my headache was up to about a seven out of ten. I took my blood pressure, got some food, and plopped myself down on the couch for a couple of hours.

Then my friends wanted to go to this weird grocery store that is in the small town our college is in. When asked if I wanted to go I hesitated and said yes, I really wanted some cool hot chocolate mix.

I know that going how is going to make my head worse, so I put on compression socks and mildly comfy cloths, chugged some water and set off. In the stores I felt really bad, and had to keep bending over to try and release the pain in my abdomen, but once we were back and everyone was cooking I was really glad I went.

After that, we all ate dinner together and then I played the game I got with one of my friends that has the same game. I just took it easy the rest of the day, and finally the pain in my head went away.

I have always tried to do as much as I can when I don’t feel well. I probably shouldn’t have gone shopping, but I wanted to and it was an experience. I was willing to pay the price of not feeling well later anyway.

Do everything you can to make your bad days a little more bearable.

 

~Maddie

Obsessing Over Pain

I am making plans to see a new doctor in a couple of months and because of this they have asked me to record my pain and symptoms daily. So now I live by the questions of where does it hurt, how much does it hurt, is that from this or this? It is frustrating because 96c7ded75615b8889b6dcdf5373415b4usually when I am in pain I try not to dwell on it. I push it to the back of my mind where I can ignore it.

But now I am forced to think about the pain and the discomfort. To realize that almost every day I am being put in some type of discomfort, and I hate to dwell on that. I want to think that I am normal and that I have maybe one bad day a week, when in reality I have maybe one good day.

I am grateful that I have the support system that I do and that I am able to see doctors that want to help me. I realize that it is important to track symptoms, but for my own mental well being, I find it detrimental. I hate looking back and seeing that this has been a four headache day week, when normally I would have a headache and when it goes away I would forget about it. Being able to trick myself into thinking I am healthier than I am is a luxury.

How have I found to get through it?

I write down all the information that I need and then put it away. It isn’t on my desktop, or any place that I look constantly. It it out of sight and that causes mebp to not think about it all the time. I am less likely to dwell on it. Now the most annoying part is having to roll up my sleeves to take my blood pressure every couple of hours.

Do what you have to do, then put it away so you can get on with your life.

 

~Maddie

School Work 10/17/2016

Now that midterms are over, schoolwork has picked up again. It’s been constant naps, and homework, and work, and classes. Luckily this weekend I got most of my work done early, and I was able to go to the city with my boyfriend and spend some time with his family. He also has the cutest dogs, and I miss my dog, so they are a good substitute.

It was so nice to see them, and his mom who taught me how to knit said my knitting was doing good. So that’s awesome!

On Sunday when we were planning to go back to school with one of our mutual friends I got a mild headache that wouldn’t go away. I tried everything, but I ended up having to lie down in the back seat the whole ride back to campus. I was glad that we had our friend with us so my boyfriend wouldn’t be stuck with no one to talk to.

I usually get bad headaches about once every two to three weeks, but because I have been extra busy this past week, I have been having more. I just have to remember to stay hydrated, and put taking care of my body over schoolwork sometimes.

All in all it was a fun weekend, and a productive week. I take pride in keeping up with my schoolwork, even if I get more headaches.

Hoping for another productive week!

 

~Maddie

Taking Medication 10/5/2016

I take two pills when I wake up, then two every four hours until I go to bed. Along with that I take up to ten salt pills a day, depending on what I am doing that day.

Taking all of these medications every day can get really boring, but it is only part of my treatment, so I try to make it as fun as possible.IMG_20161005_215204454.jpg

I got a small pill case that is decorative. It holds three doses, and has a clasp that keeps it closed. I use it when I have to take doses when I am out of the house. I have never been afraid, or cautious to take medication around people, the decorative case is more for me. It makes me want to take my medication with me, and most people focus more on the case rather than asking me about my medication. An added bonus is that sense I have been using the case more people assume that I have been taking medication for a while, and I personally think it catches people off guard when I just pull out pill bottles.

I try to make taking my medication as easy as possible. I found that I won’t take my meds because I either don’t want to get up, or interrupt what I am doing. To counteract this, I try and have my meds with me when all possible, or I have them easily accessible. That way it is not a large interruption when I have to take them.

I have to keep reminding myself that if I don’t take the meds I will feel sick, and that is never fun. There are some days when I feel like crap, and taking my medication does nothing to help. Those days are the hardest to get through. You can do everything perfectly, and still not feel better. I just have to trust that I will get through this, and keep a close eye on how I feel, knowing that if it gets too bad I need to go to the hospital.

As long as I can keep my head up and my pills down, it is a good day.

 

~Maddie

Medical Alert Swag

This is why I wear a medical alert bracelet or necklace. Some people think that because POTS will not kill you, you don’t have to worry about wearing a medical alert bracelet. As far as I understand it, because I am on medication for my POTS, if I were to be given something that could interact with those medications it would cause a bad side effects.

What my medical alert things say:96c7ded75615b8889b6dcdf5373415b4

Dysautonomia

POTS

Beta Blocker

Give IV Fluids

(My mothers phone number)

I put dysautonomia as well as POTS for two main reasons. One being that because POTS isn’t widely known, an EMT may not know what it means, but most are familiar with the term dysautonomia. However, the main reason is that “postural orthostatic tachycardia syndrome” wouldn’t fit on the jewelry that I wanted.

I decided to put beta blocker because, as I understand it, if I am found unconscious and EMT might give me something that could react with the beta blocker. I also feel safer with knowing that I don’t have to be conscious, or aware, in order to tell someone what medication that I am on.

I don’t know if putting “give IV fluids”, the EMT is more likely to give them, but it would be nice that if I fainted and was out of it, to wake up with an IV already in. No begging for fluids, and I was out of it for the needle prick!

I recommend putting someones phone number on your alert swag, that way if there are any questions that need to be answered they have a number to call. I do not live in the same state as my mother, but she knows the most about my POTS, and would be able to answer any questions that the medical staff, or just people in general, would have. I know I feel a lot safer knowing that if something bad were to happen my mother is always there to help me out (she also presented the diagnosis of POTS to the doctors to confirm. She’s pretty awesome).

I have a necklace and a bracelet that both have my medical alert information on them. I like having two options, because if I want to wear a necklace then I wear the bracelet, but mostly I wear the necklace for convenience.

When I told my boss that I had POTS I also told them that I always wear my medical alert information, and if I ever pass out and don’t come too, to call the number. I would rather have my mother assess the situation and tell them if I need to go to the hospital or not. Usually I come to right after I pass out, but sometimes it takes me a little while before I can hold a conversation, and again, it is nice having this safety net. Saying this, I feel, also put my boss at ease. It took most of the pressure off them.

I have never been in a situation that has warranted the use of the medical alert jewelry, but you can never be too prepared.

Information about POTS

Importance of wearing a medical ID

 

~Maddie

Going Into Battle 9/29/2016

Sometimes I get really bad anxiety about going to class. It’s not that I don’t enjoy the classes, or I am doing badly in them, it’s just that I think of all the bad things that could happen and get overwhelmed.

I struggled with this a lot last year. I would skip classes, simply because I was so overwhelmed. I was insecure and unable to get over that fear, which is very frustrating because I have always prided myself on being strong and independent.

This year, however, I found my solution. Whenever I am anxious about going to a class or a function I put on my battle armor, an arrow head necklace that my dad got me.

I don’t know why this necklace is special, but I swear it’s magic. Maybe it’s the fact that it could have been used in a war, and if it made it through then I can get through this class. Or maybe it’s the fact that I know my dad put a lot of thought into it, and in a way I am carrying a piece of him with me. Whatever the reason is, it gives me strength.

I just put it on whenever I am having a bad day, and I am able to make it through. Yes, the day is still hard, and as I’m sitting in class I still get anxious, but at least I went to class. I am able to make it through all my busy days. Yes, there are still some days that I can’t go to class because I am sick, but now I miss less classes than I did last year.

If you are having anxiety about going to classes, or any obligation, I recommend trying a similar coping mechanism. Maybe it’s a really comfy pair of shoes that works for you, or wearing your hair a certain way. Or maybe you reward yourself after you make it through a class you really didn’t want to attend.

Going to classes can be scary and overwhelming. Strap your armor on, take a deep breath, and put this battle behind you.

 

~Maddie

Staying Motivated 9/26/2016

Staying motivated can be hard for anyone, not just those with a chronic illness. I have found it hard over the past week to keep my motivation up for school. I have found excuses to do something other than study, or work on homework. I have still gotten everything done, but it is not my best work.

Thankfully over the past couple of days I have been able to get out of that slump. It has helped a lot living with other people who are going through the same thing. I live with six other college students. We took one of the unused bedrooms in our house and turned it into a study room. So, when I have something to do, but no motivationkeep-calm-and-do-your-school-work-3 to do it I will just go sit in the room with them while they are working. I do not give myself a goal, and usually I start off by procrastinating, but eventually I find that I am working. Being around people who are being productive makes me want to do the same.

Another thing that helped is that I am really enjoying the book I am reading, Heir of Fire by Sarah J. Maas. I tell myself that I can read for a half hour after I work on school work for an hour. I learned that if I give myself time limits my work is better. I can write an essay in a half hour, but I am guaranteed to get a better grade if I take at least an hour to write it and then another hour to edit it. As long as I am working for the whole hour I am satisfied, then I reward myself with a half hour of reading time. I have found that I actually end of reading for less time, because my mind is still on my school work. So, I put the book down and get back to work having found my motivation.

I also work wherever I am. No one said that you are going to get a worse grade just because you wrote your essay on the couch instead of at a desk. My feet go numb if I am sitting at a desk for too long, so I end up getting most of my work done in bed or on the couch. As long as it is getting done and I am putting in the proper amount of time I try not to get down on myself too much for not being able to get up.

I work the way that works for me.

 

~Maddie

My Body, Chronically Ill

Lately I have been thinking a lot about how chronically ill people say things like “when I do this my body…” or “my body does…”. It is like we separate ourselves from our bodies.

Our bodies are the things that are sick and constantly failing us, and we are the bright and cheerful person that is trying to life life to it’s fullest.

I think it is a coping mechanism. It is a lot easier to think that my body is the thing that is sick and always in pain, and I am just the person trying to deal with it.96c7ded75615b8889b6dcdf5373415b4 This way I don’t get mad at myself when I can’t do something because I don’t feel well. It is my body that failed me, not me.

Explaining this to people who don’t have a chronic illness can be hard. I have found that if they are around you for long enough they start to adopt that terminology as well. Most of my friends now ask me how my body is feeling, rather than how I am feeling, because most of the time they aren’t the same. I am constantly telling them the next symptom that hit me and ending with a simple “my body is weird.”

It is harder when you have an invisible illness. When I feel sick I look fine. Some days I wished I turned purple or something when I didn’t feel well. That way people wouldn’t have to ask how I felt, and I wouldn’t contently be trying to explain how much pain I am in. Other days I am glad that what I feel isn’t reflected in my appearance. I can go to class feeling horrible and not draw attention. I can go to work and interact with people and not get asked over and over if I am alright. It is a blessing and a curse.

Don’t let someone try to define your pain for you. If you have a headache and need to curl up in the dark, don’t let anyone tell you that it can’t be that bad. Only you know your pain and what it takes to make it better.

 

~Maddie