Am I Strong Enough?

I’m a little overwhelmed.

For nearly a year now I’ve pretty much had a break from the “patient world”. I went to doctor appointments but they were rare and only once every couple of months. Each appointment was an “ending” since I was moving. It was nice to be able to go to a doctor with the attitude that I wouldn’t see that doctor again. I almost felt like a normal healthy person who doesn’t have 5-10 different specialists and weird tests scheduled that most people haven’t heard of.

I felt healthy and normal.

So now that I’ve moved and entered into a huge medical hospital community for my health insurance and now that I have a diagnosis to give to the doctors everything has become so much more real. I don’t know how to handle it. I don’t know how to join my two worlds into one. How do you bring the “weak vulnerable patient” world to the “confident hard-working PhD student” world? I don’t know..

Today, for example, I was studying and working on my research and I was freezing. So I took my temperature and it read 96:

I gotta admit though that it is nice to have validation of what I’m feeling..

Ok. So I have a reason to feel like I’m freezing. But it’s distracting and I need to take care of it and that’s going to interfere with my work. But whatever. It is what it is. I took a bath to warm up and that worked but way overshot the mark and my temperature went up to 99.4.

Whoops..

I felt like crap. The sudden change made me feel horrible but I ignored it and went on studying, trying to make up the time I lost with the bath.

But this is the thing that worries me the most: Am I actually really weak? I’m I just using this illness and how poorly I feel as an excuse? Does everyone feel this way and really they’re just so much stronger and better at getting through it and hiding it than I am?

So maybe that’s why I don’t want to combine my two worlds. I’m afraid of being looked at as weak. I’m afraid that people will automatically lower their expectations of me. Most of all, I’m afraid that I really am weak and that if anyone stepped in my shoes they would achieve so much more than I have and could, but with a lot less tears and pain and insecurity.

I think soon though, I won’t have a choice. I’ve entered back into the “patient” world. In less than two weeks I have three MRAs, one echocardiogram, and a cardiology appointment scheduled. After that I have a neurology and GI appointment. I am also supposed to schedule a glucose tolerance test at some point too. It’s a lot and a bit overwhelming with the work that I already have from my “PhD student” world.

At this point, I just really don’t know what to do or how to handle it. I’m taking it one day at a time and praying that everything works out.

I just really really want to be strong enough for everything.

What Brings You to the Point of Tears?

Recently I was in a lot of pain, but I had to do some work. As I walked along I was struck by a sudden intense wave of pain washing over me. I stopped in my tracks, ready to burst into tears from the intensity of it, and then in a moment of sudden clarity I realized that there was absolutely no point in crying. I was not going to get relief from my tears. I was not going to be free of the pain. Crying was pointless… and that was probably one of the most depressing thoughts that I have had in a while.

So I pushed back my tears and continued on my way. I could feel waves of heat and pain radiate over me. I broke out in a sweat from the effort of trying to be functional through the pain.

I cannot even begin to describe how much pain, along with how many days of dealing with said pain, it takes to come to the realization that there is no point in acknowledging it. There have been days where I have been hunched in the fetal position, rocking back and forth, and moaning from the pain and still haven’t cried. There have also been times where I have literally screamed out from pain and yet? No tears.

So what does make me cry? Frustration.

I won’t cry from the pain, but occasionally I cry because I cannot stop the pain. The fact that pain is such a large and agonizing presence in my life and yet I cannot do anything to help alleviate it is sometimes crushing. This isn’t helped by the fact that there is very little treatment for pain. Often the only treatment is simply to attempt to mask the pain and I am terrified to seek out that type of treatment for fear of being called a drug-seeker. I am beyond frustrated with the fact that people who use pain medication for illegal purposes have an easier time at getting the medication than I would for its medicinal purposes since I’m not the one who is willing to buy or take prescription drugs illegally.

There have been a few times, however, when I have asked for something to help me get past the pain. To be fair though, there has only been one time and the immediate response was, “I can’t give you anything”. I had to go from an urgent care clinic to the E.R.  (both of which were affiliated with the same hospital) in order for someone to take me seriously. A nurse literally walked me from the clinic office to the E.R. department. I was incredibly frustrated (yes, I did burst into tears then).

I am not quite sure how to survive with this amount of pain, this frequently, with such little support. I can only think about it in the present, as each new event occurs, because if I consider it as a culmination of events that have happened in the past and that will most likely happen again in the near future…

I just cannot bear it.

Anony-mouse

Above everything else, with my disease, I am anonymous (or anony-mouse.. as this seems to be my “sick spirit animal” as featured in another post). I feel that if people were to know about my disease and how weak and sick I sometimes feel, I would be viewed and judged as “broken”.

This train of thought brings up a question that I have seen asked many times in the chronic illness community: Would you rather your illness be visible or invisible?

I see many different answers to this question, but the one that seems to be most common is: No, I do not want my illness to be visible.

You see, there is a catch-22 with this question. Having a visible illness means multiple things. You are clearly sick. Which means you are not faking it. No one will accuse you of being a hypochondriac or over-exaggerating your symptoms. While doctors may not know/understand what’s wrong with you, they probably will not say that it is all in your head. But then, on the opposite hand, everyone knows you are sick and they will make many assumptions based on that fact. With a visible disease, you are at the mercy of how people feel they should treat you instead of how you want to be treated. With a visible disease, you can never escape your reality. There is no hiding from your disease or hiding the disease.

And that’s the downside of a visible disease. There are many of my symptoms which are viewed as, at the very least, awkward, and at the most extreme? Disgusting or shameful. Like today, for instance, I went to the bathroom (already uncomfortable?) and when wiping noticed a bright read streak. I looked in the toilet bowl and saw drops of blood floating in it. There are some aspects of any disease which are found to be embarrassing or awkward. This is part of the negative stigma associated with disease.

Much more harmful, however, is that all too often, if someone views you as having something physically wrong, they will often assume that you also have something mentally wrong. So as soon as you present with an illness, your intelligence is questioned.

Working towards a PhD in molecular biology is a demanding and competitive field and I am terrified that any hint of my not being capable of doing something will mean an automatic disqualification from even trying. I am afraid that the strain of working towards a PhD will make my invisible illness more visible. If this does happen, I’m very afraid of how my advisor and fellow classmates will view me.

There may be a day when I am confident enough in my own abilities to not care how others may view my capabilities, but till then, I plan on being anony-mouse.

Graduation Day

Today was my graduation day. I officially have a Master of Science degree in Biology. I had huge doubts as to whether I would ever see this day. I assumed that at some point I would just give up and drop out. When I think about all that went into getting that degree…

My graduate career started a few weeks even before classes starting when I told my family doctor about my education plans. He advised me that I should not attempt graduate school. That the state of my health was precarious and taking on such a stressful task would be ill-advised. By the time classes started, I was beginning to think that he was right. Within the first week of classes I was already missing school because of an emergency scheduled heart catherization test. Once that test came back negative (thank God), it took just a few more tests and  finally the Tilt Table Test which diagnosed my dysautonomia. After this initial large hurdle, however, I started my beloved beta-blocker (we’re tight.. it’s a love-love relationship) and things got easier for that first year of graduate school. Every now and then I’d have a problem and I’d have to adjust my meds, but it was manageable.

What I hadn’t counted on, however, was the toll that school and work and the stress of it all was taking on my body all throughout grad. school. This became clear by my last semester of classes.

I started off that semester wearing an Event Monitor for the first three weeks. I was the girl wearing the funny electrodes and attached to a machine that occasionally “beeped”. This was the semester that I was in a doctor’s office every other week, I was in the ER a couple of times, I had countless medical tests, and once again I was missing classes for being sick.

Things were starting to drastically go from bad to much much worse. I was throwing up blood and lost over 10% of my weight, but the end was in sight. I managed to finish out the semester and the last of my classes required for my degree. I was very fortunate that I had one sympathetic professor who didn’t mind that I was half comatose in his class, with my head on the desk nearly every day, and another professor who liked me based on previous performances as an undergraduate student (I went to the same school for both undergrad. and grad.).

After that semester I slowly dragged myself back to health with rest, relaxation, and thesis writing. So while I never fully believed I could do it, especially in that last semester when things got so difficult, I successfully wrote and defended my thesis and graduated today!

Also, apparently, I’m very talented at pretending to be excellent when actually I’m just trying to get by.

Notice my feeble attempt to remain anonymous despite the fact that probably half of you already know who I am..

The Stress Test….

…is almost as bad as a tilt table test. I’m not a fan.

An important thing you need to know is that I’m in shape. I’m thin, I walk everywhere, and I have decent muscle tone. I mean, I’m not going to be running marathons any time soon, but I can walk up a hill without wanting to die. So the whole crazy heart rate thing? Yeah… it’s just my heart being a jerk. I’m not deconditioned.

The stress test started with the placement of a few hundred electrodes (this might be an exaggeration.. maybe..). I looked like I got attacked by an octopus. I was then left alone in a room to wait until the doctor showed up. The majority of the time that I was sitting in that room, calmly reading (Game of Thrones… ), my heart rate was in the 100s. Interestingly my heart is apparently not a fan of coughing which caused it to shoot up to the 130s. When the doctor came in to start the test he did note that it was crazy to have a resting heart rate so high. He told the tech that it must feel so awful to have a heart rate that high all the time. Speaking from personal experience? It does.

Upon standing up, my heart rate jumped to the 130s. A diagnosis of Postural Orthostatic Tachycardia Syndrome (POTS) requires an increase in heart rate by either 30 beats per minute or a heart rate greater than 120 beats per minute within the first ten minutes of standing. I met both of these criteria. To my surprise, the cardio actually brought up POTS (he’s heard of it!!) and was asking whether I have POTS or Inappropriate Sinus Tachycardia (IST).

Overall the Stress Test was fairly normal (I call it my normal abnormal). While my heart rate was extremely high during the test and while I did have a few Premature Atrial Contractions (PACs), it was still fairly normal. Way to go heart… act normal when there’s someone watching, but I know how you really are… Seriously, I’ve had monitors show any number of things including: intermittent bundle branch block, a-flutter, SVT, PAT, couplets,  triplets, and PACs that drop my heart rate by a 100 beats in one minute. Think any of those would come out and play? Nope. But that’s fine. I’m patient (Ha. Ha. Get it?).

One thing that was achieved however was that my cardio changed his mind about the beta-blocker. At my first appointment, he wasn’t thrilled to see me on one, but prescribed it anyway. Today, when he saw how my heart reacted, his first words were “yeah, you really do need a beta-blocker”. He also said that once I move I need to find a new cardio and an electrophysiologist. I’m hoping he’ll help me find one and will refer me. He said that where I’m moving has excellent doctors, so that is encouraging.

Ironically, the stress test did stress me. While my heart may have been behaving unusually well, I did have brown urine after the test. Usually the brown urine, for me, signifies blood in my urine along with a CK  level outside of the normal range. While I was somewhat expecting that to happen, it doesn’t make me happy. It shows that 12 minutes on a treadmill is enough to start the muscle breakdown process and is too much of a stress on my body to go unnoticed. I’m not sure what exactly that means or what causes it, but it frightens me that it is now a consistent consequence of pushing my body too hard.

Really, I’m just looking forward to sleeping for a few days now.

A Warning….

A warning to those who participate in support groups: They’re both wonderful and terrifying!

In these groups, you’ll meet people who share your disease. You’ll see how strong they are, how resilient they are, and how weak they are. You’ll see people live with your shared disease…. and die from it. You’ll see the obstacles they overcome, but also how terrifying those obstacles are.

The support groups will show you just how bad your disease can get. They’ll surround you even more with the reality of what it’s like to live with your disease. You’ll have your own medical appointments, tests, hospital stays, visits to the ER… but then you also get to see everyone else’s as well. Not only are you living with your illness, but also the illness of those you support.

These groups offer so many benefits, but they come at a price. They are an amazing thing to be apart of. It’s truly wonderful to be connected to people who know what you’re going through. You can get so many answers to questions and also validation for much of what you’re feeling. But they also keep your illness at the forefront of your mind. You fear what new symptoms you might get. And when you do get a new symptom? Suddenly you’re terrified about what that new symptom might mean. You look up diseases that others’ have that you haven’t even heard of.

It’s like Dr. Google telling you that that bug bite you have is actually cancer. Only worse. Because so many other people with your illness showed the same complication and now has the same new diagnosis.

Never mind the fact that the support groups seem to bring out the newly diagnosed and those with the worst cases.

Thank God for the old-timers of the group who are there to remind you that you’re not likely to die any time soon.

So while I love the support I have received from the groups, sometimes I need to remind myself that everyone is different. Having the same diagnosis does not mean that my illness will follow the same path.

My Lose-Lose Scenario

One of the challenging aspects of having a chronic illness is the tight rein you have to keep on things. While some people may be able to get away with certain things, I can’t. I need to be careful with most of what I do and try to remain neutral, not straying too far out of the bounds of my health.

So I recently screwed up. I was careless in lab and burnt myself.

The offending culprit right after my act of lab-stupidity.

Luckily, by now, I know that “healing” isn’t my strong suit. So I put a ton of neosporin on right after I burnt myself. Covered it the next day at work with a band-aid and added even more neosporin. I thought I was doing good…

A now infected burn. Lovely. Fan-freaking-tastic.

So when the first round of at home treatment doesn’t work, I move on to the second round: Hydrogen peroxide. It’s my secret weapon. I’m really hoping it works. I would feel incredibly stupid for having done this to myself if I end up needing to go to the doctor.

But, you see, that’s the main problem. Whenever I stray from my limits and end up doing something that harms me, I feel stupid. I feel stupid for cutting myself, missing a doctor appointment, eating poorly, not getting enough sleep, not exercising properly (either too much or too little)…etc. Now, if you noticed, those are things that most people mess up with or do on a daily basis. But for most people, the consequences are less dire. A burn, like mine, on anyone else would probably have healed just fine without getting infected. But because the consequences are more dire for me, I punish myself for slipping up more so than most people would.

I’ve created a lose-lose scenario for myself.

Either I have no maneuverability in my life, or I call myself stupid.

So I’m going to start punishing myself less for making mistakes. I am going to stop thinking less of myself for doing a stupid thing when my progressing illness decided to raise the stakes on me without letting me know. I’ll just take care of the problem and try to do better next time.

Am I My Illness??

Does my illness define me?

This question has haunted me for a while now. I call it a “mirror question”. A question that I’m afraid to truly ask for fear of what I’ll find out about myself.

For a while, I had thought that perhaps I was my illness. Maybe it was something that I had let define me. But worst of all, I was afraid it was something about me that I  liked. I would stay up at night thinking “what would I do if I didn’t have these symptoms?” and to my horror, I felt upset at the idea. So did this mean that I had let my illness define me?

No.

My illness does not define me.

It took me a little bit of time to realize that, but first I had to be brave and finally face my “mirror question”. When I finally thought about it however, I realized that the lack of knowledge about what was affecting me was the thing that was making me upset. This is a bit tricky and a tad convoluted, but I hadn’t quite realized that if I didn’t have my symptoms, then I wouldn’t be sick. All I had considered was that I would have to start all over in trying to figure out what was wrong.

Once I realized that this was my hang up, I was able to answer my question honestly: If I didn’t have these symptoms I would do everything that I already am doing, but it would be a lot more easily done.

So what am I?

I am a Masters student in biology. I will soon be a PhD student in cellular biology (I got accepted into three programs!!!). I work full-time hours. I have many hobbies that I enjoy. I have friends who I hang out with.

So what does my illness add to this equation?

It makes everything so much harder. Those full-time hours? Being a graduate student? Those are so very hard to juggle by themselves, but with an illness? It’s a challenge. And that’s me being modest about how much of a challenge it actually presents. Often, I feel like a failure, because I can’t do it as easily as most people seem to be able to. I have limits. My illness gives me limits.

I would give anything to be able to get rid of those limits.

ER Update

I rarely go to the ER. In recent memory, I have only gone twice before. The first time I thought I was dying (Spoiler alert: I didn’t). The second time I wanted to make sure my kidneys were ok (This trip earned me my first nephrology appointment). But the point here is that I rarely rarely go. Normally I go to an Urgent Care clinic or I make a doctor appointment. I just don’t do ERs. And I especially don’t go for something like pain… I can put up with that at home right? Wrong. So very wrong!

To be fair… I attempted to go to the Urgent Care clinic first.

To be honest… I really didn’t put up a fight when they suggested the ER.

My day started off alright. I woke up with no pain. Walked over to the mirror in no pain. Then I stretched. PAIN!! All of a sudden something cracked in my neck, my muscles all went into spasm, and I could no longer move my head without excruciating pain. I also had a wave of panic that I had seriously screwed up my spine. I was terrified that one wrong move would result in something worse than pain. I get a little paranoid when it comes to my spine.

So I took a shower, hoping that the warm water would relax it. When that didn’t work, I called my mom (yes, I still call my mommy when I’m sick) telling her what happened and that I was going to go to Urgent Care. Once there, I sat in the waiting room for 2 very painful hours. When I was finally taken back, they performed an xray which showed that the vertebrae were fine. Then the lovely doctor came in, told me everything was good, that I could go home, and that I should take Tylenol for the pain. That was the point where I burst into tears. Sobbing that Tylenol did nothing and that my stomach couldn’t take any more NSAIDs (Throwing up blood? Yeah, not fun.). I think that was also the point where the doctor finally realized how much pain I was truly in. He suggested I go to the ER to get a CT scan and get it looked at better. So that’s what I did. The end result was that there was no new damage to my spine, but my muscles were being completely pissy. Thankfully they sent me home with a muscle relaxer and some vicodin.

It took about a week for the meds to relax the muscles. That was pretty much the week from h*ll.

In other news… I got a new toy!

 

 

 

 

 

 

 

 

 

I’m sure this will come in handy in the future!

It’s Not About You…

Dealing with a chronic illness is never easy. There are ups and downs and more sorrow than you can imagine or that can possibly be explained. So here’s a blanket statement that might make it a tad easier for friends and family to deal with: It’s not about you.

I know this may seem rude, but it’s really not meant to be. It’s just something that should be kept in mind.

It’s not about you… when I’m anxious. Chances are I’m scared or nervous about an upcoming appointment. Each appointment is like a huge question mark about whether the doctor will help me, blow me off, or call me a liar. They are nerve-wracking and terrifying and I get anxious right before the appointment and unfortunately respond with grumpiness.

It’s not about you… when I’m quiet. Pain and exhaustion take up a lot of energy and attention. If I’m being quiet, it’s not because I’m mad or angry at you. Most of the time I’m just hurting. A lot.

It’s not about you… when I don’t want to share. I live with my illness 100% of the time, 24 hours a day, 7 days a week… etc. Sometimes I just want to escape it. Sometimes I want to pretend that the doctor appointments don’t happen. That the medical tests are not a reality. My not opening up and telling you all about it does not mean that I do not trust you or that I’d rather keep things from you. It might just mean that I want to keep it from myself for a little.

It’s not about you… when I cancel plans. Ok, this one may seem obvious, but I feel it needs re-stating. If I cancel plans, it’s not because I don’t want to see you or don’t want to hang out, but is instead probably due to the fact that I’m not feeling well. Some days I look and act perfectly normal so it’s hard to remember that I am sick.

It’s not about you… when I’m angry. Unless I tell you straight out that I’m angry at you, don’t assume I am. I watch every day as people do things that I should also be able to do. I feel weak, insecure, tired, pained, and half of the time I feel like I’m a failure. It makes me so angry to know that I could do so much more if I didn’t have to suffer with this. So I get angry when I see or think about things that others do so easily.

I have a chronic illness and I do the best I can in order to get by day to day. Most of the time all I ask from my family and friends is a little understanding.