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?

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.

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.

Scanxiety and Other Sorts of Horrors

Scanxiety: It’s not just for cancer patients these days. With Loeys-Dietz, I have signed up for a life-long subscription of looking for little ticking time bombs. Is this the year I will have a brain aneurysm? Does that blood in my urine mean a renal aneurysm? Is heart surgery in my near future?

This condition and I are going to have so… much… fun…

But whatever, I’ve survived this year’s scanxiety. All of my MRAs (Magnetic Resonance Angiograms – not even the doctors know the difference!!) were normal. I’m so relieved! I’m going to go ahead and take this as a free pass to ignore any sudden sharp pains for a while. I’m pretty sure now that they’re not a sign that I’m going to die.

I still hate echocardiograms though. And this one was not an exception. While my MRAs were normal, the echocardiogram showed that my mitral valve is starting to get leaky. This isn’t really surprising with a connective tissue disease, but it’s certainly not a “yay!” moment. For now it’s fine though, just something to keep an eye on in the future.

The thing that is really annoying and troubling is that my echocardiograms tend to show elevated pulmonary arterial pressures. The very first time this happened, I had to get a cardiac catheterization test to get a more accurate measurement of the pressures. Thankfully that was normal, but the test itself had so many complications that it wasn’t funny. A twenty minute test took two hours and resulted in a puddle of my own blood on the floor. Fun. With the echos though I always worry that the pressures are something that will slowly get worse until it is a real problem.

After the first echocardiogram, I started beta-blockers and was able to get my heart-rate under control. Because of this, my second echo showed much lower pressures. With this third one though, the pulmonary pressures have gone back up to nearly where they were before I was on any medication. And this is even after having gone up in dosage. I have an uneasy feeling that another catheterization test is in my future. But at least I hopefully won’t have to worry about it for another year. I just need to avoid getting anymore echos between now and then.

So that’s the impassive and straight-forward explanation of how the tests went. But I’ve been really struggling lately. I feel so broken and dejected. Currently I have people lining up to get away from me and I’ve just stopped caring. I was recently yelled at for pushing someone away, and the ironic thing is I really wasn’t then… I am now. I’ve completely given up.

It took me so long to write this update because I don’t know how to share how much I have truly been struggling and I didn’t know how to just ignore it and write a fake response.

Along with the scanxiety, and getting through them, I’ve been having some insane GI issues and have dropped 5 pounds. I have never had such constant intense nausea. Even the last time when I lost so much weight, the nausea wasn’t nearly as bad and I could at least eat. This was definitely not the case this time around. My mornings consisted of huddling in the shower curled up in a ball crying, hoping that the nausea would lighten up enough so I could fake it better and go on with my day. I had also inadvertently went on a liquid diet without even realizing it. I survived on Ensure and soup… at least, whatever soup I could stomach before giving up an hour later (I flushed half a bowl of cereal down the toilet…).

And that’s just my health.

PhD school is… hard.

And one of my closest friends trying to get himself killed didn’t help either. And my other friends? I swear I’m just an exit sign to them anymore. Step on over here and I’ll show you the way to leave.

I feel like I have no heart to give right now. I’m just trying to get comfortable with being dead inside because maybe then the pain will hurt a little less.

I think I’m getting better at it. I wrote that last line without crying…

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 the fact that probably half of you already know who I am..

I Wish I Just Had A Common Cold

Dealing with other people who have the common cold or an infection or some other virus that will eventually go away is something that I really struggle with.

It’s hard for me to listen to the whining and complaining.

It’s hard for me to see that person completely stop everything for a few days in order to get better.

It’s hard for me to be sympathetic.

It’s hard for me to stop myself from screaming GET OVER IT.

It’s hard.

Because…

I hurt. I hurt a lot. Every single day. I’ve literally screamed out from the pain. In fact, I do that multiple times a week. I’ve walked hunched over from the pain. It’s on the cameras in my dorm. I have the proof. Unfortunately. It’s not something I’d want others to see. So I hurt.

I won’t complain. if I complained every time I felt bad, every time I hurt, every time I thought I couldn’t handle it any more… I would complain every day. I don’t want to live with that. And frankly I wouldn’t have any friends if I did that. So even if I wanted to complain I won’t because I feel censored.

I can’t stop and just rest. This thing I deal with? Yeah, it’s going to be there for the rest of my life. I’m not going to be cured. There are barely any treatments (if any at all). So I can’t rationalize taking time off and just stopping everything for my illness. I would have to stop my life. And then what? What is worth at that point?

For that week that most people spend sick.. imagine living with that. Everyday for the rest of your life. I would like to think that earns me something. Some consideration when talking to me. Some help if I’m struggling. Something. Especially when I actually do take a rare moment and indulge in my pain and actually complain. For me to admit that I’m struggling and having a rough time is big. It’s not something I like doing. It’s a cry for help.

Unfortunately because it’s my “normal” or because I don’t look sick, my cry for help gets ignored.

So let’s have a reminder. Even when I’m functioning like a normal person…

I have still been dealing with weight loss. This is a serious sign of an illness. Why then is it so hard for me to make others realize the significance? (I have a fear that it is because they are jealous)

I have pain more days than not.  For doing things that most people take for granted. Working 8 hours kills me. I can barely walk home. When I say my muscles hurt, I have the CK levels to back it up. Eating hurts. Isn’t that supposed to be a pleasure in life?

I struggle to sleep most nights. How rejuvenating is a good night’s sleep? I wish I knew.

I have heart symptoms daily. Things that would send a normal person to the hospital. Yes, most of mine are benign. But I have proven a flutter, R on T phenomena, PACs that drop me in a dead faint, etc…

I stand up most nights just to drop down again in a faint. Have you ever fainted? It’s hard to control how you land? I’ve broken glass before. I’ve hit my head before. I’ve landed and sprained my joints before.

These things are my “normal”. These things are day to day realities for me and something that I won’t normally complain about. So when I do complain? Imagine then how much worse I must be feeling. I wish so much that it would matter to those around me. I wish for people to understand this and to have compassion. I wish for them to actually realize what exactly it means when I say “I don’t feel well”. I wish that saying those words would give me a break. Would let me be able to put down my guard just a little. I wish for all this so very much.

But it seems that it’s all given to people with a normal cold. One that goes away.

So I’m jealous.

So I’m working on it.

But it’s hard.

 

 

How strong do you want me to be?

I was answering a survey about my illness the other day and was really stumped when I came across the question: “How have you benefited from your illness?” I was shocked by this question. The person conducting the survey has a chronic condition herself. Are there certain things that she’s happy about in regards to her illness? Do others feel this way? Am I missing something important? I struggled to come up with an answer and finally wrote this:

Being diagnosed and suffering with this illness has shown me how strong I can be. I have faced things that make others cringe. I have seen a look of such compassionate pity in my doctors’ eyes that scared me. With each appointment I am faced with a new complication, a new diagnosis, a new referral or specialist… But, despite all this, I have managed to achieve amazing things. I am in graduate school, despite my doctor telling me that I shouldn’t put that stress on my body. I missed classes my very first week due to a heart catheterization test. I have thrown up old blood one day and then gone to a final the next. I am still able to work in a physically taxing job. I have worked a full 8.5 hour shift and then gone directly to the ER. Dealing with this illness has shown me how STRONG I am. I know now that I am capable of handling these things with grace and integrity. I know that I won’t crawl into a depressed slump and let my life pass by when faced with harsh news (that’s not to say that it doesn’t still upset me). I am grateful to this illness for showing me how strong I am.

 

Writing this, however, I knew it was a lie. Yes, I am strong. Yes, I have achieved a lot. But how much more could I have done without the illness? I AM strong and what could that strength have gone to if I wasn’t always struggling just to hold myself together? How much happier would I be without the struggles and pain of my illness? As I wrote my answer, all these things went through my mind with the subheading of liar. So I added one last bit to my answer:

While the strength is nice and reassuring it can’t make up for what I deal with. This illness has taken so much from me. I would rather be weak and happy than strong and sad. 

Knowing that I am strong enough to be able to work a long shift at work in severe pain, urinating brown urine, and then calmly taking myself to the ER doesn’t make me happy. It doesn’t change the fact that I’ve missed work due to tests and appointments or that I have been the subject of scorn and abuse from my coworkers for calling off so often. Being strong enough to take a final a day after throwing up blood and barely being able to get out of bed, doesn’t change the fact that I was in so much pain during that final that I could barely think straight and almost walked out of the test. The strength isn’t worth watching my dreams wash down the drain due to one bad semester (graduate school rarely has mercy). I’m not sure that I even view it as “strength” anymore. Being weak or strong isn’t going to change my illness. It’s not a trade-off: weak and healthy or strong and sick. At times I don’t even know what is strong and what is weak. Whether I am one or the other. In the end I am just trying to survive and live my life. Am I strong for simply surviving and going about my life as I would anyway? What other choice do I have?