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.

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.

New Year’s Resolutions

With this year almost over and the new one soon to start, I’m reminded of the New Year’s Resolution I made. Having reached my highest weight last year of 133 pounds I decided, like most people, to get fit and lose weight with the new year. My Resolution was to lose 5 pounds. I wanted to get back to around 127 pounds where I’d been for the past five years or so.

Those of you who have followed my blog for a while now can probably see where I’m going with this…

Be careful what you wish for.

133lbs - 5lbs does NOT equal 117lbs!!

133lbs – 5lbs does NOT equal 117lbs!!

Yeah, I overshot my mark. By 10 pounds. Go me. Not.

I started the Resolution by doing what I normally do: Nothing. I’m horrible at keeping up with my resolutions. Losing weight is a lot of work and food is so yummy. Especially things like brownies and cupcakes and pizza… Yum! So I did absolutely nothing to achieve my goal of losing 5 pounds for the first three or four months of the New Year.

And then I got sicker.

And then I started to lose weight.

A lot of weight.

So I lost the 5 pounds, but it didn’t stop there. The 10 pound mark came and went too. Once I hit the 15 pound point though, I was afraid. I had no idea why I was losing weight and I didn’t know how to stop it. So I went from wanting to lose weight to wanting to gain weight. I started to drink Ensure Plus for weight gain. The irony was not lost on me.

While I’m not gaining much of the weight back, I seem to have stopped losing it. I’m very thankful for that. There is nothing quite so terrifying as losing a large amount of weight (over 10%) and not knowing why. Only really sick people lose weight like that. I couldn’t imagine myself as being that sick. I still don’t know if I was. Maybe I wasn’t. Maybe I’m still in denial.

Now that another New Year is about to begin, I keep wondering what this year’s Resolution will be. I don’t think I’m going to make one. I’m just hoping the next year will be better than the last.

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.

 

 

Perspective…

…is everything.

Every now and then I feel as if my body is breaking down on me. I seem to be experiencing new and terrifying symptoms every two weeks of late. With these new symptoms, I am faced with a choice of whether I seek medical attention for them or choose to ignore them. Because of my biology degree, I have just enough information to be dangerous to myself. This is only exacerbated by the fact that I am exceedingly stubborn. So the latest symptom that would send any normal intelligent person to their doctor is the fact that I had brown urine. This could be from any number of scary terrifying reasons, but because of the bloodwork I had about two weeks ago and my biology background, I feel like I can ignore it for the time being. I am prone to thinking that it’s either extreme dehydration, or is a result of increased CK levels (which I have had in the past). This intermittent symptom, coupled with the fact that I am having trouble waking up to my alarm these days, makes me feel betrayed. Like I said earlier, I feel as if my body is breaking down on me. I feel like it is being stealthy about it too…. little pieces that tear apart and disappear. Almost like they were never there. I say it’s sneaky, because the medical tests will hint at it, show evidence of it, and then be perfectly normal again. Anemic one day, fine the next. Muscle death yesterday, just dandy today. Ketones and protein in urine last week, only to disappear the next week. I find this incredibly annoying. If my body is going to treat me like crap and if I am going to suffer the symptoms of it, I’d like to get to the root cause. I want treatment! And I can only get that, if we stop this irritating game of “hide-and-seek”. 

But like I said earlier: Perspective is everything. I have seen people whose bodies are TRULY breaking down. They make what I suffer with look like a walk in the park. Sometimes I view this with: “Hey! My pain is pain and I deserve to get upset about it!” And I do. I do have that right to be upset, because what I’m dealing with does suck and it’s not something that can or should be compared. But sometimes I view the fact that others suffer worse symptoms with: “I REALLY appreciate what I have, even if it is hard for me at times.” And again, I do. I am so grateful for the health I do have. For the support I have. For the medical insurance I have. For the family I have. With any given day, my perspective may change. One day I may cry and rage at the unfairness and the next day I may thank God for the gifts I have been given. I believe that this change in perspective is just something that tags along with chronic illnesses. I’m almost positive that every patient out there probably can empathize with what I’ve written here.