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A Post-Op, a Follow-Up, an Infection–Isn’t Summer Fun?

Thursday June 15th: 2 Weeks Post-Op

Today I had my post-op appointment for my gallbladder surgery. Dr. Jones said I’m healing great. He took off the last of my steri-strips and checked to make sure the muscles underneath the incisions are coming together. I’m still not allowed to lift anything over 20 lbs or do strenuous exercise for another two weeks (which includes body weight stuff like yoga- I asked), but after that I’m clear to do as I please. I think that includes life in general–so if you see me robbing a chocolate store on TV or something, don’t worry–Dr. Jones said it’s ok.

I’m hardly in any pain any more unless I try to use or stretch my ab muscles too much. The most residual soreness is in the area where Mr. Gallbladder used to live–it feels like I’ve got a stitch/cramp there underneath my ribcage.

My digestion is also still adjusting to  the vacancy, but is doing quite well over all. After all the horror stories I read about crazy bad diarrhea post-gb removal, I had a very slight case of the runs for less than a week. I have been able to eat cheese, yogurt, lactose-free ice cream, burgers, potato chips, brownies, whip cream, avacado, and lots of other yummylicious foods that caused gb attacks before the op. I am SO happy I got the surgery. I don’t miss the little green fella one bit!

Monday June 19th:

I had a follow-up with my neurologist today. My migraines have improved from daily to 2-3 times per week–much better, but still pretty out of control. Doc L is an awesome neurologist; he listens, talks to me like an equal, and most importantly- hasn’t tried to hold my hand, not even once (my neurologist in HS always held my hand, no matter what diversionary tactics I employed to avoid it). But even he admits that total control–zero headaches for months–is likely out of reach in my case. So for now we are shooting for better control, and we’ll go from there.

Since my body seems to handle the Prozac well, we are doubling the dose (to a normal adult dose) and hoping it will get me down to 1 or so migraines a week. Unfortunately the jump in dose has brought back my favorite of Prozac’s side effects: I can’t sleep! Not a wink. Luckily it should pass in a couple weeks. It did the first time.

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Until then this is me

Thursday June 22nd: 

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I have finally accepted it. I have a sinus infection, for the second month in a row. I am frustrated because it’s been just over a year since I had sinus and turbinate surgery and I’m wondering if I’m going to need another soon. With my Ig infusions I shouldn’t be getting infections this much, but they just keep coming one after another.

My immunologist doesn’t have answers for me, but he is trying. When I get an infection I don’t even have to go in, I just message him and he sends the antibiotic script to my pharmacy. This time I’m on Amox-Clav for ten days,which is an optimistically short course, but hopefully it’ll do the trick.

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I know it’s silly but every time I have to go on antibioticsI feel like a bit of a failure. Every time I go over things in my head– maybe if I had done A, B, or C differently I wouldn’t have gotten an infection. Maybe if I ate better, slept more, got more or less exercise, didn’t do this and did do that…

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I’ll see Doc C for a follow-up in a couple weeks and we’ll talk it over, see what more can be done. It’s a constant climb and I’m always just hoping to find a good foot hold or a little ledge where I can catch my breath. But even though it’s hard–it’s so, so hard sometimes–when I stop to look around, man it’s still a beautiful view.

Keeping Chronic Illness Real: Augustus Waters and I Share a Thought

Just in case you’re not a teenage girl- Augustus Waters is a fictional creation from John Green’s The Fault in Our Stars. It’s a somewhat cliché story of two teenagers dying from cancer who fall in love, but I must admit I actually own both the book and the movie. I liked that Green at least made an effort to make it real–some of the thoughts and feelings his young characters express were very, very real to me. I’m not sure why but this morning I was thinking about the one sentence from that book that has stayed with me for the two years since I read it–a three word phrase that Augustus tearfully repeats over and over again when the weight of his illness is simply too much.

“I hate myself.”

“I hate myself I hate myself.” He says. He is upset because he wanted to do just one thing for himself and he couldn’t. He realizes his illness has taken his independence–has taken over his entire life.

I remember once thinking those exact words. I was in the shower, crying. I’d just had a wonderful day–I got to go on multiple walks in the beautiful spring weather and I’d gotten to eat lots of yummy food. I had done normal people stuff and at the time that still wasn’t normal to me. It was a month or two after I had started being able to eat solid food again–I know I haven’t really told that story yet, I will sometime–suffice it to say I had been very sick for about a year. At the point I found myself crying in the shower I had been getting better for a couple months. I’d just had a great day and I was miserable. It all still seemed too good to be true–a normal day, the possibility of a normal life again. Every day, every second, I was terrified that it would all disappear–that I would get sick again. I was so angry at myself that I couldn’t just enjoy it all, that I was so afraid all the time. I felt so small. I thought those three poisonous little words again and again as I sobbed.

The truth is I don’t hate myself. Sometimes I hate being me. Sometimes I’m disappointed that I can’t be stronger, braver or more patient. But I don’t hate myself.

When people tell me they admire how I handle my illness I shudder inside. I think of all the moments when I have been so small, angrily crying “not fair;” I think of all the times I have looked around at my peers with envy and bitterness that I cannot do what they can do, that I will never be one of them. I try to be positive and do my best with what I have, but I’m human. Sometimes I get so tired; I become a small, weak shadow that the better part of me loathes, but here’s the kicker: that’s okay.

It’s okay to get mad, to break down, to be small.

Moments like those, they always pass. They pass for me and they will pass for you too. Once they do we pick up, we go on. Some days that’s the best we’ve got. Why should we feel bad about not being perfectly strong or patient or whatever? We’re all just lost boys and girls, trying to present our best, bravest face as we look around hoping that someone else knows what to do.

We’re all a little lost.

There was a girl I knew at school. She had to use canes to help her walk and had a hard time speaking clearly. One day in church we were talking about gratitude and the teacher asked for examples of things we are grateful for. This girl raised her hand and said “I’m grateful for my disability. I can help other people like me. I can help people better because of my disability.”

Later that week I had one of my “when it’s all too much” breakdowns. My sister saw that I was crying and gently coaxed me until I haltingly choked out what was strangling me inside, “I just can’t do it anymore. I’m so tired of being in so much pain. I can’t be like Melba. I can’t be grateful for this.”

I can’t be grateful for my illness.

Look at that, I’m no angel. I used to hate myself for it, but what good does that do? Does it help me handle my illness better? No. It makes me feel depressed. It makes me feel like it’s all for nothing–all the struggle and pain. Well if it was my choice I wouldn’t choose it–life with a body constantly breaking down–but I do know it’s not all for nothing.

What’s it all for then you may ask? Well geez I’m just a lost kid like the rest of you, how’d you expect me to know? I’m just running on faith–faith in a God who loves me and knows what’s best for me–knows what all this is for.

 

 

 

The Domino Effect

If you’ve ever wondered why people with chronic illnesses can’t just take some medicine and go back to things as usual, I submit the subject of this post to widen the highways of your understanding: the domino effect. The longer I’ve dealt with chronic illness the more I’ve come to understand that there is no illness, or medicine to treat said illness, thats effects are isolated to only one part of the body. Allow me to illustrate by relating the avalanche unleashed on me this year (dramatic I know but hey, it’s a killer metaphor-pun intended 😉 by one part of my body yelling out in pain.

The fall semester was going along swimmingly–September and the first part of October I felt the best I had in a good long while. Then the back half of October brought about 99 problems, all of which were related to the invisible hatchet that had implanted itself into my head. Perhaps it was the stress of midterms, or maybe my body had simply become bored of behaving–for whatever reason chronic migraine resurfaced in my life with a vengeance. You couldn’t even really call it a flare- it was more like full-blown fireworks painting the sky with the words “I’m back!” It got so bad that in the beginning of January, I did something I swore I’d never do again–go back on Topomax.

For my fortunate friends unfamiliar with Topomax, it is technically an anti-seizure drug, but it is also one of the few FDA approved drugs for the treatment of chronic migraines. A fun fact that I learned after being on it for more than a year in high school: it is colloquially known as Dopomax, because of its unfortunate tendency to make idiots of its users. But that is only one of its many fun side effects (side note–not everybody reacts to medicines the same; for many people Topomax has been a miracle drug with few side effects, so don’t just go off of my experience). In spite of poignant teenage memories of this drug causing me to believe I was getting dumb with age, I became so desperate for relief from the unrelenting pain that January third I swallowed a dose of Dopomax for the first time in over two years.

Thankfully I lucked into a neurologist that listened to my concerns about going back on this particular drug, so he started me on the lowest possible dose–a “sprinkle” dose designed for pediatric patients. But it didn’t matter. No matter how small the dose, my body refuses to get along with Topomax. This time it didn’t seem to effect my cognition as much, but it hit me harder in different ways. Since my sinus surgery about a year ago I hadn’t had a sinus infection requiring treatment with antibiotics. Two weeks after starting Topomax I was forced to go on the first of four rounds of antibiotics that dominated the first half of my spring semester. Although Topomax helped tremendously with my migraines, it destroyed my immune system, and the two and a half months I was on it were almost as bad as the years before I started on IG infusions. I couldn’t catch a break! A cold would lead to a sinus infection and I would catch another cold before I had even finished the antibiotics for the infection.

That is the domino effect–treating one problem worsens another or causes a new one altogether. I could not continue on Topomax because of the devastation it was causing my immune system, which will always be the central pillar of my health problems. On the reverse side, IG infusions often trigger migraines. Antibiotics for infections aggravate my severe IBS and lower my immune system. Steroids for infections and asthma flares decimate the immune system. Pain killers can cause stomach, liver, kidney problems–scratch that almost any medicine can cause stomach, liver and/or kidney problems. These are just a few examples. You see? The dominos never stop falling–round and round it goes, tumbling one into another indefinitely. That is one of the reasons why chronic illness is so, well, chronic. You can never quite get ahead of it.

To end this post on a more positive note: since stopping Topomax my immune system has been doing much better. I am also finding moderate migraine relief from an unexpected source–Prozac. It’s an SSRI that helps with migraines because of its action related to Serotonin. I have almost no side effects from it, which as we have been discussing, is nothing short of a miracle. It’s often hard to find the right fit with migraine medication; I was blessed to find it on only the second try this time around. So for those of you still struggling to find relief, hang in there–there is hope ahead yet.