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Yours,
Penguini

Post-Doctor Thoughts: Learning How to Fly

Since I wrote that long, heartfelt post about preparing for a new doctor's visit, I thought it only right that I write a "post new doctor's visit" entry.

All of those feelings I wrote about before - anxiety, apprehension, hopeful, optimistic, etc. - all of those feelings were mulling around in me the night before the appointment. Perhaps that contributed to the fact that I woke up in the middle of the night with horrible nausea and ended up throwing up the dry cereal I had eaten 5 hours earlier. (I don't believe food is still supposed to be sitting there in your stomach 5 hours after eating it! But then that just shows how much I needed the appointment with this GI doctor.) Anyway, the throwing up surprised me a bit but I recovered, got back to bed, and so far there hasn't been a repeat vomiting episode.

As my dad and I drove up through Boston and navigated our way around the tricky area around the hospital, all those feelings bubbled around but I was surprisingly calm about the whole situation. And that calmness helped me through the day, I think. My blood pressure, which is usually on the higher side when it's taken right after I've walked down the hall to the exam room, was on the lower side - either a sign that my nerves weren't on edge or that I was dehydrated, I'll choose to attribute it to the former. And then the moment of truth - the doctor walked in. (It sounds weird to refer to him as "the doctor"; like he's not a real person, somehow above humanity because he isn't referred to by a name, but I guess that's the power we give to our words as we choose them. I am certainly not of the belief that doctors are akin to gods, so I will refrain from referring to them as "the doctor" whenever possible.)

When Dr. R walked in, he sat down and went right on to talking about what he thinks is going on with me, or rather what the possibilities are, and then how we'll test for them and what we'll do about them if the tests show up the way he thinks they will. There was no need to discuss my medical history because I had been lucky enough to have the opportunity to e-mail with him before making the appointment so he knew my history and was able to have already thought things through and decided on a plan of attack. He knows what he's doing, he believes and listens to me (although there was little talking on my part, mostly listening to all he had to say and explain), and I feel confident that together we will get to the bottom of this. And he is not just focusing on my GI problems, but also looking for other things that could be going on to complicate my medical picture further and explain some things.

My weeks ahead will be filled with quite a few trips up to Boston for testing and follow up appointments. I will probably get to know some areas of the hospital pretty well by the time everything is said and done, and I'm not complaining about that. I've been waiting for tests and appointments like this for a long time and now I will push through and keep going until I have answers, a diagnosis, and a treatment plan. Whatever comes with all of this, I will take in stride and accept. Perhaps it won't be easy to accept things right away, but with time I know things will get easier to deal with and I will come to terms with everything. I have already done that for so many other areas of my life that I'm sure this area will be much the same.

Hot packs on my belly; a brain fog thickened by Phenergan (an anti-nausea med that just wipes me out); feeling like I will expel the contents of my stomach much of the time; nibbling on crackers and small bowls of soup; exploring the limits of my stomach and sometimes pushing a little too far. This is life right now, for better or for worse, and I really can't complain because I am here, I am able to eat something and drink pretty normally, I am able to push on and do the few things that mean a lot to me, I have a loving supportive family and extended family network (namely my church family and awesome online friends), and I now have three doctors who are trying to figure things out (my new PCP, my Lyme doctor, and my new GI). I have stacks of DVDs that I can watch to keep me occupied when I'm not feeling up to doing anything else, I have a laptop with wireless internet to keep me connected to the rest of the world, I have a good life.

Sure, it could be better. Sure, I could do without the pain and nausea and all of that. Sure, I could ask for more, but that won't change my current situation. I know things will get better, and I know things will be okay. And even if they don't get better, it will still be okay. Perhaps not the most powerful words or the easiest thing to come to terms with, but it's the truth and the more you say it, the easier it is to believe it.

I'm here for a reason, there's a purpose in all of this. How can I believe this with everything that I've been through? It's simple - I wouldn't be able to make it through all I've been through if I didn't believe this, if I felt that this was just the act of a malevolent greater power or just something random that has happened to me. When you quality of life lessens, your spirit must take up the slack and soar even higher. When you spend days in bed doing nothing but staring at the television or at the ceiling, it becomes much harder to look at the rest of the world and not feel slighted. It wasn't supposed to be like this! I had dreams, aspirations, life goals! But being sick doesn't destroy dreams, it may very well change them but at the same time it teaches you more than you could ever learn without being sick - that dreams, aspirations, goals are some of the most important things to hang on to. My wonderful friend Tara shared one of her favorite quotes by Langston Hughes with me a while ago and I find it so fitting - "Hold fast to dreams, for if dreams die, life is a broken winged bird that cannot fly." Indeed, our dreams give us wings but it is our own spirit and soul that must learn how to use them.

When you come to the end of all the light you know, and it's time to step into the darkness of the unknown, faith is knowing that one of two things shall happen: Either you will be given something solid to stand on or you will be taught to fly. -Edward Teller

Yours always,
Penguini

New Doctors and Butterflies

I have an appointment with a new doctor tomorrow. With every new doctor I see, thoughts race through my mind – will this be the last doctor I have to see and explain my complicated medical history to? Will this one be able to sort things out and help me, even if it’s only in a small way? As that appointment gets closer, I have a fluttering in my stomach. You know the kind I mean – that combination of excitement and apprehension, like the way you feel before the first day of school or before setting off on a trip by yourself for the first time. It’s that slightly nauseous feeling that makes you want to throw up and do a happy dance at the same time.

It may seem weird to be “happy” about going to see a new doctor. I don’t think you can truly understand the complexity of this feeling unless you have experienced it for yourself. Unless you have walked a mile in the shoes of someone with a chronic illness (or, in my case, multiple chronic illnesses). Perhaps through my writings you’ve been able to step into my shoes for a moment, or at least better understand what it is I and so many others with chronic health conditions go through everyday. That’s what I hope at least.

So as I think now about the doctor’s appointment tomorrow with a new gastroenterologist, I begin making lists in my head (and on paper because, let’s face it, my memory isn’t anything to brag about and thoughts don’t seem to nest there for very long before finding their way out and taking off for The Bahamas). I need to print off directions to the hospital – Mass General, a new experience for me to be seeing a doctor whose office is actually IN a hospital (and in Boston, I generally avoid Boston doctors because of their bad reputation with Lyme disease). I need to make sure I have a list of all my current doctors and one of all my current medications. I need to make notes about my history of gastrointestinal problems with as much information as possible about my current situation (mainly to help me get my thoughts in order so I won’t be totally lost during the appointment). I need to copy some of my medical records so he’ll have as much pertinent information as possible. Yes, organization really is necessary or else I’m sure I’d show up for the appointment in a dense brain fog and not be able to coherently talk about anything.

My experience of seeing new doctors for the first time is mixed at best. Sometimes I’ve been looking forward to an appointment for so long that I’ve built up grand expectations that only lead to me leaving the office in tears. That has thankfully only happened on one occasion that is worth remembering (with a certain Lyme disease doctor who I won’t go into details about). But there have been some other visits with new doctors that have given me renewed hope that things WILL get better. Expectations are dangerous things, and they’re difficult to keep in check. Because even if you tell yourself over and over that you shouldn’t expect much so as not to be disappointed, you always have high hopes that can easily be popped like a balloon.

So today I’ll make lists, organize everything the best I can, and hope that I don’t forget anything. And of course I will hope and pray that this appointment goes well and that this doctor will be able to figure things out. One of my biggest fears is to never be given a diagnosis, to be blamed for what’s going on, to be scolded for not forcing myself to eat even when I’m so nauseous I just WISH I’d throw up so I could get some relief. I don’t believe any of this will happen tomorrow, but I also don’t expect to have a real diagnosis on the first visit. I will need testing. And the more tests I have that come up normal, the more tests I’ll have to go through. Is it too optimistic to think that the first test will bring a diagnosis? Am I being unrealistic? I’m used to tests, and especially to tests that only show that there’s nothing wrong.

If you’ve never had a chronic or serious illness, you might not be able to understand the wish that something will come up abnormal. But for those of us who are dealing with health struggles everyday and deal with doctors who only look at our test results (all normal) and then dismiss us as having a psychosomatic illness, having a test show an abnormality can be like getting that pony you’ve always been waiting for. This may seem like a weird analogy, but when you think about it, it makes some sense (or maybe it only makes sense to me). I'll explain.

A pony is something you’ve always wanted, but with the pony comes unwanted complications and responsibilities – you have to clean out the barn or stall, you have to spend time brushing its hair, you have to take care of it. So while an abnormal test leading to a concrete diagnosis may seem like a wonderful present at first because it’s proof you’re not crazy, with the diagnosis comes new challenges – taking medications, dealing with side effects from the medications, dealing with new medications to combat the side effects from the first medications, doctors visits, long drives to see specialists, insurance frustrations, and the financial burden of it all. But still, in my opinion at least, it’s much better to have a diagnosis and be able to do something about it rather than wandering around from doctor to doctor with none of them knowing what’s wrong and all the while having to deal with horrible symptoms from the undiagnosed condition.

So I pray that tomorrow will bring some answers, although I fear at first it will only lead to more questions and of course to those dreaded but much needed tests. I wish I could have a clean slate, go back to the beginning of my illnesses and make different choices based on all the knowledge I’ve gained over the past 8+ years. (Wow, more than 8 years of being sick. I wish there was a time limit on how long you were allowed to be sick for, since I fear the year count will continue increasing for a long time to come.) If I had known then what I know now, I don’t know if I’d still be sick now. But, as they say, hindsight is 20/20. Ironically, my CURRENT sight is better than 20/20, although only slightly. I wish that worked for seeing life clearly.

For today, I’ll try to forget about the need for tomorrow’s appointment to go well and just concentrate on getting organized. At least if I can have SOMETHING organized, I feel like I’m not completely drowning in the messiness of everything. Hopefully the flutters in my stomach will subside (ironic that I’m having nausea and butterflies in my stomach as a result of thinking about the appointment with the GI doctor) and my mind will be able to quiet down enough tonight so I’ll be able to get a good night’s sleep and be somewhat well rested in the morning. And if not, I guess it’s not a bad thing for a doctor to see me feeling really sick.

“It’s all right to have butterflies in your stomach.
Just get them to fly in formation.”
--Dr. Rob Gilbert