The Remote

Having a serious chronic illness is like having a remote which controls your life, whether you pause it, slow it down, stop it… without actually being in possession of that remote. Something else has the remote and you don’t have a say in when it is used and which button is pushed. You are just left dealing with the consequences.

Lately my remote has been messed with and I would very much like for it to stop. Especially sense it came at a time when I was feeling fairly healthy. Almost guiltily healthy (which is a whole other ranting blog-post). But I was doing well. I had gained enough weight that I was starting to try to lose it (again… whole other blog-post). I wasn’t dealing with excruciating pain. I wasn’t fainting.

I was doing well and living a life that was fairly chronic-illness-free.

That’s when the remote came in though, and with seemingly one push of a button, my life stopped running smoothly.

It started slow at first with stomach pain that just wouldn’t go away. I started modifying my diet, eating safer foods, and was at a new, albeit a slightly more  exhausted: stable.

That stability came crashing down around me 5 days ago…or was it 6 days? I’m still having trouble remembering anything from those days. What I do remember is my heart completely going insane, making it impossible to walk very far. Distances that were no problem before, suddenly had me sitting on the sidewalk gasping for breath. I had no idea what I was doing half the time and couldn’t remember what I had done the other half. I still can’t.

I’m finally coming out of it a week later. Feeling exhausted. Feeling pain. But mostly feeling bitter about this invisible remote that can so easily pause my life, slow my life…stop my life?

Chronic illness

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The Things That I Forget

Lately I have been dealing with a lot of stress and health issues. My symptoms have gotten worse, but it’s the type of worse that is more uncomfortable and miserable than life-threatening or scary. But the uncomfortable really sucks and the miserable is really… well.. miserable.

But I am living my life, or rather, struggling through my life and trying not to fall from the weight of everything. It’s hard. I think at times it might even be unbearable.

But what choice do I have?

None.

Every now and then, I get a glimpse of the big picture and I think of all the things that I have forgotten about myself in order to pretend that my life is a little more normal than it really is. It’s a coping mechanism. Or denial. I’m not sure which.

So what have I forgotten?

I forget that fainting is not normal. It is not a common daily occurrence for most people. That saying “When you fall down, you have to pick  yourself back up” probably didn’t mean it literally.

I have also forgotten about my spina bifida occulta.

SBO2

Spina bifida occulta of my S1

Is it strange to forget about something like this? I have pain from it on an almost daily basis, but the pain is so normal for me that I just ignore it, deal with it, and go on with my life.

What other choice do I have?

None.

I forget that the amount of exhaustion I have is not normal. Apparently others have the energy to come home after a hard day at work and are able to make supper. Sometimes when I think about that, I am genuinely amazed. I have gone to bed before without supper because I am just too exhausted to cook anything.

I forget that aneurysms are nightmares to everyone else when they are just a normal reality to me.

But, again, I ask: What choice do I have?

None.

Forgetting is not necessarily a bad thing. Because when I remember… when I think about everything I deal with.. when I look at the big picture…

I feel as if I will drown.

Maybe I Can Do This

Sometimes it just takes one person, to say one thing, and all of a sudden there is hope again. I’m not sure the person realized what they were truly giving me when they said this:

face it, you’re a success story

But I truly needed to hear it. Lately I’ve been thinking of myself as such a failure. I always feel like my illness has put me two steps behind everyone else when they do not have to deal with a systemic chronic illness. I feel like I’m always on the edge of failure. I fight so hard to achieve what I can and then on top of that I also have to fight my body.

And believe me, it loves to rebel. Its latest victory was to sleep through three alarms. It has done this before whenever it decides that I am too exhausted. My body takes what it needs, when it needs it, and I have no say in the matter. But at any rate, that little trick cost me an extra credit point that I really needed.

Body: 1 and Me: 0

One step forward… and my body drags me two steps back.

So to have someone tell me that I’m a success story? Someone who knows about my illness (as much as anyone currently does) and knows what I have achieved… and still says that? It was like a healing salve.

I keep saying that I feel like I’m drowning. That I am underwater and am on the edge of giving up and just letting go. To hear that I am a success story though?

Finally… finally a life-jacket…

A tiny glimmer of hope and maybe now I can rescue myself the rest of the way.

I am not an innate failure.

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..

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.

Woops

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.

Blood Sugar Crashes and Late Night Cravings

Something that I have struggled with for as long as I can remember is hypoglycemia. The problem with my having hypoglycemia, however, is that I cannot recognize the symptoms of the lowered blood sugar until it’s almost too late because of my also having dysautonomia. I have symptoms from the dysautonomia nearly every time I change positions on a daily basis. So normally I just assume that the reason I may be feeling poorly is because my blood pressure has dropped. So the first thing I do is drop to the ground with my head between my legs and wait for the the sick feeling to go away while hoping that I don’t faint. When it doesn’t go away I start to panic. It’s absolutely terrifying being on the edge of fainting, with your vision black, your arms and legs going numb, and feeling like you’re about to throw up, and having no idea how to fix it. So by the time I would figure out that it’s my blood sugar that’s the problem, it would almost be too late for me to fix it myself.

Seriously.. I’ve had my mother nearly spoon feed me ice cream at a Wendy’s Fast Food restaurant (although this is one excellent way to get FREE ICE CREAM).

Luckily by now I pretty much jump to “oh! Blood sugar!” right away if the solutions for a blood pressure drop don’t help. But it still comes on incredibly quickly and I’m not very capable when it does happen. I once tried to take my blood sugar with a monitor during one of these crashes and with shaking so badly and being so confused it was pretty much a comedy of errors.

Lately (or rather, for the past year or so) I’ve been waking up in the middle of the night with a strong craving for sweets resulting in my hunting down something sweet at 3am and eating it. I then conveniently forget it ever happened until I come across the evidence the next day: A jelly bean in my bed.. a candy wrapper on the floor… spilled skittles all over my desk… All of which I was ok with (assuming I never ever see an ant in my bed too) because it was an easy enough solution and I was trying to gain weight anyway. But about a week ago I reached my “Something’s gotta give” point.

I woke up and immediately felt that something was wrong. I was laying down but I felt numb, shaky, and nauseous so I figured out that it was my blood sugar within seconds of waking up and went to eat something. Unfortunately I promptly threw up what I ate. It took around two hours to get fully recovered and able to go back to sleep.

So yeah, I’m trying something new that will hopefully help me sleep through the whole night without any craving of sweets or throwing up.

It has carbs, sugars, AND protein. If this doesn't work I might cry... and then gorge myself on jelly beans.

It has carbs, sugars, AND protein. If this doesn’t work I might cry… and then gorge myself on jelly beans.

In other news… Going to the store and getting this, along with some other groceries, took enough effort to cause visibly bloody urine as well as muscle aches (by now I know that these signs mean that I also have an elevated CK level). It makes me incredibly frustrated to know that such a normal activity can overly tax my body during a time when I’m feeling better overall than I was about a year ago (I haven’t been to a doctor in TWO MONTHS!!). I guess I’ve sort of reached a lower level of “normal”.

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.

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 knowing that probably half of you already know who I am..

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

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.

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.

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.