Allergies: What Did We Learn?

All my allergy testing yesterday didn't quite lead to the answers I was hoping for. Obviously, we were hoping I would test negative on all the drugs, but that was not quite the case.

I had a positive reaction to penicillin and ceflosporan. What this means is I reacted to an ingredient in most of the drugs I'm given when I go into the hospital. Think of it like a cooking recipe. Let's just use spaghetti for ease: If I use sauce, noodles, and meat, I get spaghetti. But if I'm allergic to the sauce, I might have difficulties, even though I'm not allergic to spaghetti, per se.

That's what the situation is. I have "Multiple Drug Allergy Syndrome". So yay for that... What it means moving forward is that we have to be careful. We'll have to monitor me a little better, maybe, because I may or may not have a reaction. The reaction itself could range from minor to severe, also.

In conclusion, we didn't learn a whole lot. Now everything is documented, which is good, but basically I might have a reaction, I might not; it might happen early, it might happen late; it might be bad, it might be tolerable; it might get worse as I age, it might go away... so I continue to be extremely complicated!

Live blogging at the allergy doctor's office

Im at the allergy doctor's right now. Pretty bored.

We just started testing me for drug allergies. My appointment was at 10:00, and it is...

11:19 -- They have pricked my arm 14 times with 6 drugs, two different doses, and two controls. I'm really not looking forward to the next step, which is where they make the little bubbles under the skin. Not only does that hurt like hell, because it has to be right under the first layer of skin, it is more likely to cause a reaction than these little skin pricks. So, itching when you can't scratch it.

11:27 -- Ok Round 1. Bubbles under skin. Time to sit 15 minutes and see if they react. If they DON'T then we go to Round 2. And possibly Round 3. So that would equal 18 bubbles by the time I'm done. Goddamn.

I have to remind myself, I wanted to do this. We need more drug options so I can continue to stay healthy so this needs to be done. On one hand, I want a few of these to react so I don't have to get stuck so much. But on the other I don't, because that means I'm not allergic and we can use it (a much better long-term effect than dealing with needle sticks.

I think she's gonna need some real estate on my right arm. Right now, I must say I'm fairly impressed in my one-handed typing speed with my right hand. I'm using a borrowed iPad so it's not too bad.

11:48 -- Round 2. No reactions yet. The nurse lied, haha, and turns out we don't have another round. So yay! This is it. My arms look pretty ridiculous right now.

12:04 -- Looks like I might be reacting to a couple of these. Penicillin for one.

12:15 -- Two positive reactions. Waiting on the doc now. Bye folks, this has kept me un-bored.

Home Is Wherever I'm with You

In case you weren't aware, Jarrod and I will be moving. We are hoping it will be sometime this summer, but we'll just have to see how things go. We have decided to move to Washington, for a number of reasons. But mostly it is because that is where my family is, our friends are, my job is, my church is (I miss Lourdes a lot) and we just feel it is what we need to do.

After finally reaching that decision about a month ago, we have begun the process of figuring out the logistics and whatnot. We went looking at houses Tuesday night with a realtor, we're talking with some finance people for our mortgage, and we spoke with another realtor tonight about listing our house. I'm not as scared about the buying aspect this time, since we've done it before. But the selling part makes me anxious. Not to mention, we're not exactly looking forward to it; we're not the neatest people on the planet, and we'll have to really buck up and pick everything up ALL the time for when the house is being shown.

But "the pieces are moving" on all fronts, so hopefully everything works out. Our house should be on the market in a couple weeks. We have a few things to do before we list it, and we'll tackle all of those this weekend and next week. She had some suggestions for things to do before we take pictures and list it, so that was good.

Not Just Any Ol' Piece of Furniture

The picture below is our new TV chest. But it’s a very special TV chest. I love the back-story to it, not gonna lie…

So this all started as an idea for a wedding present. Rick (on left) has made both Jarrod’s parents a mantle for their fireplace and one for Justin and Mallory as a wedding present. He knew we did not have a fireplace, so he asked what we might like. We felt we would really like a nice stand for our TV. That’s a little much for a wedding gift, so we all agreed it would just be a separate project. Rick just wanted us to let him know what we wanted.

So I sketched it out, we decided on cherry wood, and a dark stain similar to our bedroom furniture. We then had two options, we could buy the wood or get it from a cherry tree. Rick was able to find a cherry tree at a job he was working on for someone. We decided on the tree. I think they were going to cut it down anyways, so he asked if he could have it. We obviously saved a lot of money versus buying the wood, but the tradeoff was that we’d have to wait another year or so because the wood had to dry out.

There was a lot of love, thought, and talent put into this. Rick found us the tree, for starts. Then another family friend, Dan, has a saw mill. So he made the boards from the tree. Then it went back to Rick, who does woodworking, and he made the chest for us. Then it went to yet another family friend, Danny (on right), who stained it and finished it for us.

The finished product is what you see here, but it’s a lot nicer to see in person. Rick and his wife Terry are on the left, Dan and Sherri are on the right. This is something we are so thankful for, and will forever cherish.

New Blog, New Beginning?

For some reason, I have been itching to do a new blog. I’ve done this once before, where I ‘moved’ blogs.

Previously, I did it because I knew there were people who looked at my blog that I no longer wanted to. So I switched, emailed the new URL to specific people, and never looked back.

But the main reason I am switching things up is because my old blog is tied to an older email address, and I can’t change that.

I mean, REALLY?!

Something I love to hate on the news are new studies that prove things any knowledgeable person could already assume to be true anyways. Things like 'New study finds that smoking may lead to other types of cancer besides lung cancer' or 'Leaving your child alone with strangers is a bad idea' or 'Spending too much time on your cell phone may cause pain on your ears.'

But this one is just SO dumb I can't believe that a MILLION dollars was [supposedly] spent to do this study. Here is how it goes: "Cheap Drinks At College Bars Can Escalate Drinking Among College Students— It's no secret that alcohol use among college students can cause a number of problems, including injury, violence and even death. A new study has examined the impact of drink discounts at college bars, finding that low alcohol prices at drinking establishments pose genuine threats to public health and safety." And so on.

Really? REALLY? Lower prices at bars means people drink more? Holy shit, what a revelation. I never knew that.

Take it away Kermit.

A 'final' update

I'm calling this my final update because I am also calling this day the end to my crazy 4-month lung saga.

I had a follow-up appointment today, and it went ok. On the bright side, my oxygen was where it should be, but that's about it. Let me review since I just realized I haven't written anything since Easter...

Mid-April (actually, that week after Easter) I went into the hospital suddenly after a morning of coughing and a week of feeling like crap. Lo and behold my numbers had really dropped and my oxygen levels were only 89%. I went into the hospital straight from my doctor's appointment, and spent 8 days there. I did a full two-week course of antibiotics and we got my numbers back up to 28%. Still not where I was...

My doctor wasn't ready to call this a home run quite yet, so for the past three weeks we tried a few more things. Like usual, I had side effects with the meds and had to end a little early. But I didn't know that I felt all that better; it was slight, if any.

Well, today confirmed what I thought which is that: I am no better. In fact I'm slightly worse than three weeks ago...

And that's just the way it's going to be.

We're going to continue my normal regimen, give my system a break from antibiotics for as long as possible. And I'm hoping I can try to come back from this a little bit by taking some walks, and eventually building up to using our elliptical again. I have been telling myself, and I even promised Jarrod, I would take walks every other day, but I still haven't made it happen. I can't even describe the internal frustration with myself that I have right now because I still haven't done it. But the fact is that I can't just continue on like I did 5 months ago; I have to be extra diligent with my treatments, stay up on my rest, and exercise. Or else I will continue on this downward path, end up in the hospital constantly, and yeah, that will pretty much define my life every couple months.

I'm having a really hard time with today's results. I don't know what is going on with my health that I can't stay healthy anymore. It seems like any hard work, IV meds, hospital stays all help for such a short period of time, and after that it's all for naught.

I'm sorry these blog posts as of late aren't filled with better news. I wish they were.

Easter

Happy Easter everyone! It's been a good day today, starting with mass, visiting with family, sitting outside, and then visiting with more family. Mass was great. We decided to go to Lourdes, so that was nice to see everyone; Lourdes is still my parish 'family'. Our priest told a cheesy joke to start off his homily, and it's hilarious to see him sprinkle everyone with holy water because he just laughs the whole
time watching everyone's reactions to getting wet. It was some of the most beautiful weather today too, and it was great to sit outside all day. We're back home now, and trying to chill a little.

Easter today meant a little more to me than usual. I can't remember the last time I updated this, but here's the latest on my health: I'm doing so-so. Unfortunately all the meds and treatments we did in the past few months did nothing for me, and I'm still where I was when we started. That's just the way things have to be right now. My body needs a break from meds right now, so that's mainly why I'm not back on something. Of course, were I to get sick, we would treat it, but since I've not caught something, I just have to hang tight. But I'm not gonna lie: it sucks. It really sucks. I'm coughing more than I ever have in my life (for a normal day), my treatments don't go too far, and I am frequently tired and worn out. I'd say almost every day, by the end of the day, I'm feeling pretty blah (as in, not breathing well) and I'm also tired. This past week I've been waking up every night coughing as well, and/or coughing when I lay down to fall asleep. So I've probably been averaging four hours of sleep on top of all this.

I had a huge breakdown and let out a lot of anger and frustration about this on Friday, and then today's Easter message spoke to me. In our priest's homily he was talking about believing in the risen Lord
and turning to Him when we feel hopeless and helpless... I can't think of two better words to sum up how I felt on Friday night. So Easter, for me, really felt like God was trying to call me back, remind me He's still there.

But I now realize that He's been doing that for a while. And will continue to. Yesterday at the baby shower, I had many people ask me how I was doing. But it wasn't your typical greeting of "How are you?" It was a true, caring "How have you been doing?" or "How are you feeling?" This morning at mass, I had more people ask me how I was doing and said they were praying for me. My friend Doris, who is the most religious woman I know, greeted me with "May the risen Lord heal you!" and hugged me saying she had been offering up Holy Week for me. God is definitely talking to me through all these special people. It's slightly strengthening, even when I feel like I have none.

Checkupdate

I figured this might be the best way to give everyone an update, especially after I heard how much exposure my previous post received.

Today I went back to Barnes for my checkup after that last appointment. It just struck me how different the two days were weather-wise. Talk about a crazy winter: last week when we went, it was snowy, wet, and cold. Today, as I type this, I am sitting on the porch basking in the sun, enjoying the 70 degree weather.

Unfortunately, I can't say that my appointments had the same extreme differences. Today I was slightly better, though not nearly as much as we'd hoped; let's call it a mostly cloudy day in the 40s as compared to last week's snow. As I said before, my numbers are usually around 45-50 when I come off of IV antibiotics. Today, I was at 35%. Yes, that's an improvement over 29, but not by much. I still haven't broke the 40s. So what does this mean?

Well, it means a few things. One, I will stay on one of my medicines for the time being. Apparently they have some patients who just stay on this medicine for life, so it is not uncommon. They want to see me in a month again, versus the normal three months, to check how things are going. I also am going to get back to exercising so I can try to get my lung functions back up that way too. My "exercising" is not really much of anything at this point, but it gets me huffin' and puffin' which is what we want.

In the 'long-term' I will probably be back in the hospital before long since I didn't get a whole lot better this time. However, when that happens, my doctor wants to hook me up with an allergist and go through the desensitization process for some of these medicines I am "allergic" to. I am "allergic" to quite a few medicines, so our choices are limited. This time, with the germs I have in my system, we could not use the best meds because I am allergic to them. Some of these allergies are old as well, so there is a chance I have outgrown them, which is why keep saying "allergic" in quotes. So anyways, in order to avoid the 'half-ass better' state I'm in right now, we are going to find out what I truly can and can't tolerate. I know this will be a bit of a pain, and probably uncomfortable at times, but I'm ready to do it. I don't want to face another hospitalization like this one again where I did so much and gained so little.

For now, though, I am considering myself no longer sick, per se. I don't know what came over me, but I am not accepting this for the long term. I know that I will get back to where I was, and hopefully even better if this exercising starts to work out a few months down the road. But in the mean time, I am at peace with where I'm at; I'm not worse, I need to keep working on it, and I guess it's just not in the cards for me right now.

I know many of you are praying for me, which literally brings tears to my eyes when I try to grapple with just how many people are thinking of me. I thank you. It means very, very much.

Life Is Precious

It's days like today where you find yourself in a whirlwind of emotions and slightly intertwined lives, leaving you to ponder the meaning of it all.

I give you three tales of life, in mostly chronological order as they happened today.

The first is a story from this morning. This morning's commute was not quite normal in that it snowed the first "major" snow of this season. Many people ventured out, some people turned around to head back home after deciding it was too slick (like me), and some people got stuck in traffic on the interstate. The interstate was shut down this morning due to an accident. A man in a tractor trailer began to swerve after a woman tried to merge into his lane, he lost control his vehicle, and crashed into the concrete pillars in the median of the highway that hold up an overpass. Jarrod was the first person to help this man.

Jarrod said he was over a quarter of a mile away when he saw it happen, could not believe anyone else hadn't stopped, so he did. He pulled over and headed over to the truck where he found the driver gasping for air and unconscious. He did what he could to help the man, and eventually more people stopped to help too. One of them was a doctor, so at that point Jarrod said he got out of the way so the doctor could take over. By the time Jarrod left the scene, the driver had stopped breathing.

First of all, I find it greatly brave that he decided to be the first person to stop and check on the man. I don't want to go on about that, but I just find it courageous. Secondly, it made me take pause and think 'That could have been him.' We all are slammed with moments like this from time to time; you start thinking about how you didn't hug them long enough, kiss them enough, or said "I love you" with enough meaning, had this been their last day. In an instant, this man was on the edge of life, and it feels odd knowing that my husband and a handful of other people were some of the last people he ever saw. I have no idea who he was, but my thoughts are with his unknown family and the sudden loss they've been dealt.

The second tale is from this afternoon. At my doctor's follow-up, I saw a guy in the waiting room for PFTs who smelled like an ashtray. I almost coughed just from breathing the air he stirred up as he walked by; it was pretty bad. Later, when I was done with my test and in the waiting room for my doctor, he was there too. He walked out of the doctor office, into the waiting room, and said "Well, they told me to quit smoking cigarettes," threw away a paper they gave to him about quitting, and laughed.

Now, here is a guy who most likely has a genetic, debilitating lung disease (I'm pretty positive they only see CF patients on Mondays), and he SMOKES!? I had heard from a few people there, in clinic and in the hospital, that there was a patient (or two) that smoked. It obviously baffles everyone. Why a person would choose to smoke, on top of having a lung disease, is beyond my level of comprehension. You would truly be speeding up death by at least 150%. This man's complete disregard for life astounds me. He must not value much of anything. And the fact that he laughed at the thought of quitting smoking just adds insult, if you ask me.

The third story is my own. I did not have a good checkup today. My numbers were the same as they were when I went in to the hospital, in fact slightly worse. And to explain that: usually my lung functions hover around 48-50, which is considered my baseline. But today, my numbers ranged from 27 to 34. What this means, friends, is that I am using 34% of my lungs. Yes, one third. The rest of my airways are either blocked, clogged, damaged, scarred, or just plain unusable right now. I've done two weeks and two days of antibiotics and gained nothing. I'm out of breath sitting still, I can barely get around, I have random coughing fits that tire me out to the point of falling over, and the good effects after doing a treatment barely last me 10 minutes. I feel, almost, as if I'm beginning the fight for my life. I'm not ready for this to be the state I will always be in from here on out. I've done everything the doctors asked me to do, but it hasn't helped. Now, I have 1.5 weeks more of antibiotics, and if that doesn't do the trick, then we are truly up a creek.

So maybe this blog does not make much sense, but to me I found these three things oddly connected today. One individual lost his life, one doesn't care about his life, and one is trying to get her life back.

How complex life is. How trying.

How precious.