Reality

For anyone, reality can hit you at the worst times. For someone who is chronically ill, I feel reality hitting me more often than I feel it hits a “normal” person.

I have been dealing with POTS for five years now, but I still struggle every so often with the fact that I have a chronic condition and that most likely I am not going to get better. However, I am determined to not let this slow me down.

I realize that hiking the entire AT is a lofty goal for anyone, and especially someone which a chronic illness. Knowing that I may not be physically able to complete it not a good enough reason for me not to try.

It has always been a dream of mine to complete a thru-hike, and the appalachian trail has a special place in my heart. In a perfect world I would be able to complete the three major trails during my lifetime: the AT, the PCT, and the CDT. But, I am aware that I may not ever be able to complete one thru-hike, but that doesn’t mean that I am not going to try.

Having this goal gives me something to strive for. I wake up every day knowing that if I work out today, it I take the stairs, if I eat all of my meals, then I am bringing myself one step closer to being able to go out on the trail. On my bad days I think about when I am on the trail and have bad days, at least I will be in beautiful country. Any sick day in the woods is better than a sick day in bed, in my opinion.

Reality may keep knocking you down, but it doesn’t matter how many times you fall. What matters is how many times you get back up.

 

~Maddie

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Goals With Chronic Illness

I have found that when thinking about my health and getting healthier, I have to have something to work towards. So, earlier this year I set the goal for myself of completing a thru hike of the Application Trail.

With a chronic illness called POTS, it can be hard to even get up and walk to the bathroom, how can I even dream of doing something like this trail?

Lets take a look at the monster I dream of tackling.

The trail is a total of 2,200 miles and stretches from Georgia to Maine. It takes, on average, six months to complete. During the thru hike, I will encounter mountains, river crossings, and inclement weather among other challenges. I will be attempting a North Bound or NoBo, going from Georgia to Maine.

Why would I want to try something so challenging?

Many people have asked me that question, and it is a logical one. The answer has many parts. First off, I have never been one to take it easy. I have always set hard goals for myself, knowing full well that I might never accomplish them. This is just another star on the horizon that I am shooting for. The other half of the reason is that earlier this year my dad passed away. He was always interested in doing a thru hike, and together he and I completed part of the Long Train in Vermont. This would be a hike that I would have loved to do with him, but because he is no longer able to have that opportunity, I feel as though I need to do this in his memory. I need to at least try.

Knowing that each day when I wake up on the trail that it is up to me and me alone to get from this place to the next is exciting to me. As of now I am working every day to make sure I am healthy enough to complete the trail whenever I want to.

This is the first health goal that I have set for myself that actually excites me. I am excited to get up and work out every day. I am excited to gain the necessary weight. I am excited to get stronger.

The reality is that I may never get there, but it won’t be for lack of trying.

 

~Mads

Service Dog?

The other day I was at lunch with my mom and we were talking about this vlogger that I follow. She has POTS as well, and she has a service dog to help her with her disabilities. My mom asked me if I would ever get a service dog. I would be lying if I said I had never thought about getting one. In a way it validates my disability, because it is something that people can see that will tell them that I have a disability. I don’t want people to pity me, just to understand without me having to explain.

I told her that I would be open to the idea and if I felt my disability got to the point where I could no longer function around the house then I would probably look into getting one. I also mentioned that I would be more likely to get a service dog before I got a wheelchair. For me, I could not handle the blow to my self esteem that a wheelchair would bring.

I went from being a very active person, to not being able to run up a flight of stairs. For me, personally, I will do anything to keep out of a wheelchair. To me, that is giving up.

I know that they help a lot of people and I am glad that they are an option for some people, but for me they aren’t.

I believe that everyone is entitled to the tools that they choose to help them cope with their disability. Could a service dog help me now? Probably, but I don’t think I am at the point where I need that much help. Maybe I am in denial with how badly I am restricted, but that is my own perception. Hoping for the day I grow out of this, but I am willing to assess my situation and use to tools I think will better my life.

 

~Maddie

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

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