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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

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

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

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

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

Napping! 9/9/2016

I have been so tired the past few days. I haven’t been able to go to the gym either. My body has just been wanting to sleep and nothing else. I have still been able to get everything I need to do done, but it has taken me a lot longer to do so.

Also, my half hour naps have turned into two or three hour naps. I don’t really see a problem with that though, if my body needs the rest I am going to give it what it needs. If I don’t take a nap I end up falling asleep while doing homework, and that just isn’t pleasant.

I have also realized that my hands get really numb when I have been writing for a while. This makes taking notes not so fun. As I was doing research into alternative writing methods, my laptop is to big to bring to classes, I stumbled across fountain pens. They take very little pressure to write with, and are supposed to keep your hand from cramping up. I have always had an interest in them and this seemed like the perfect opportunity to try them out. I found a company that sells disposable ones, which seemed like the perfect way to start, and I didn’t want to pour a lot of money into something that I might not enjoy. They are supposed come today, I can’t wait to see how they work.

I didn’t ask my parents before ordering them, but when I did ask they were very supportive, as usual. My whole family has always been willing to do whatever they can to make life a little easier for me. For that I will be eternally grateful!

 

~Maddie

Fun Weekend 9/7/2016

This weekend most of the people I live with went home for Labor Day. So, my boyfriend and I went out and bought two Xbox games that we had been looking at. This is the first time he has been around an Xbox, so we are both still getting used to how it plays.

It was fun to play those when everyone else was gone.

On Saturday morning we made chocolate chip waffles, scrambled eggs, and sausage. It has become a tradition to make something good for breakfast on the weekends, because we both don’t have time to cook during the mornings throughout the week. It is also nice because he works Saturday, so cooking is something we can do together before he goes to work and I do school work.

Sunday we just hung out and played more video games. Just had a relaxing day, I wasn’t feeling too great, and he was happy to just relax.

On Monday he had rehearsal in the city, so we drive the four hours there and back. I didn’t mind going, I know the drive can be lonely, and I got to work on my homework while he was in rehearsal.

Even though we didn’t do much it was still a really fun weekend! The best part being that I wan’t tired when the school started again. Though after working out on Tuesday I was really nauseous and dizzy, so I just took a nap before doing anything else. I was planning on showering right after the gym, but my body had other ideas. Oh well, I still got everything I needed to get done done. And that night I was able to make mashed potatoes for my friends. Though, we don’t have a masher, so I mashed them with a fork and spoon. They turned out okay, with lots of salt of course! It I had pushed myself earlier in the day I wouldn’t have been able to help cook.

It’s all about balance when POTS tries to take it away from you.

 

~Maddie

Walking With a Heart Rate of 130

I have been recording my heart rate as I have been walking to class. It usually takes me about ten minutes to get from my house to class, and for that time my heart rate is around 130 beats per minute. Most everyone has experienced their heart rate going that high, but few have had that high heart rate while they are walking.

You feel the tightness of being out of breath, like you can’t get all of the air out of your lungs. It’s as though you are running, but not getting anywhere. The first time it really hits you, it can be scary. I am used to the feeling of breathlessness, the racing pulse, the dizziness.

What I try to do is just keep walking. As long as I am moving forward, and my legs are working I know that I won’t pass out. Once I get into the building my class is in, I take a seat. I give myself a few minutes for my heart to stop freaking out.

You will learn where all of the close seats are in the building your classes are in. One of my classes has chairs on each landing of the stairs, which is wonderful and a great idea.

For me, the longer I am walking the harder it gets to breath. It isn’t so much a tightness in my chest, but an inability to get air in and out of my lungs, like they have shrunk. I try and take deeper breaths and focus more on my breathing.

There have been a couple times where I have felt very dizzy and light headed when I pushed myself to walk too far. I simply sat down where I was walking, right in the middle of a bunch of students. I figured that was the better option, I’d rather not fall or pass out. So, I sat until I felt I could stand and then continued on my way, no harm done.

That seems to be the key to POTS, it will make you feel like crap, but there is no harm being done to your body. We aren’t dying, so why would anyone care?

Before I had POTS I didn’t think twice about how a persons quality of life can affect them. Now I think about it every day.

 

~Maddie

Working Out With POTS

At the start of the summer I started going to the gym with my boyfriend. I have always been an athlete. I grew up playing competitive soccer and tennis, so I am not new to working out. The feeling of being weak is new though, and I hate it. I hate not being able to do more than 10 push ups and I enjoy feeling strong.

That’s why it frustrated me when the doctors said that working out, for me, would have to be slow, not a lot of weight, and lying on the ground for as many exercises as I could do. I wanted to get my strength back, and I thought I couldn’t do it the way they suggested.

So, when I started going to the gym again I did what everyone told me I couldn’t do, lifted weights. I made it work by doing more exercises that required me to sit. When an exercise called for me to be standing I would sit in between reps. Doing this I can do up to an hour four times a day.

On the days that I don’t feel well enough to go, I simply don’t. Thanks to doing this over the whole summer and keeping up with it I have seen my strength return. I have a stronger core, and am able to sit up for longer when I don’t feel well.

I’m not trying to say not to take your doctors advise, in this situation I put off returning to exercising because I knew if I did what the doctors wanted I would still feel as though I’m failing. I had to do exercise my way.

Every day that I work out I feel like I accomplished something, even if i have to deal with a little headache afterwords.

Take that POTS.

 

~Maddie